Savory Sensations

First Stitches

2012-01-21T00:54:00.000-05:00

Olivia took a head dive into a coffee table tonight, gashing open her earlobe and the neck behind it. She eventually ended up needing 9 stitches all together - 5 on the ear and 4 on the neck.

The irony of all this is that it happened at an EFMP meeting - "Exceptional Family Member Program". It's basically the military's special needs division and a wonderful resource.

No, strike that, Mandy, it's AMAZING. And AWESOME. ;) But I digress.

The flyer said children were welcomed. They were and so both Rafe and I were there. However, the meeting area wasn't really childproofed and when you combine that with a bunch of developmentally delayed kids running around, something was bound to happen. I was actually surprised it was Olivia - I'm so used to her climbing, running, falling, crashing - all without getting hurt that I never thought it would really happen to her. She's been remarkably good about falling with a kind of graceful descent.

It happened so fast that it was surreal - I heard this really loud thump like a book hitting the floor hard and then silence. I didn't even realize it was a child at first, and it took me a second longer to realize it was Olivia. Others closer to her grabbed her and she still wasn't making a sound and I couldn't see her face. Rafe took her and started to hand her to me and by that time I could see her face screwed up in misery. She finally burst out in a scream and cried for maybe a minute. That's a pure PWS thing to cry for such a tiny amount of time...but it bothered me that she continued to whimper a bit after which is so unusual for her. She feels pain, but not to the degree that most of us do. I kept checking her face, even thought she had hit the right side of her face/ear and put ice on it. I have no idea why I didn't check her entire face, but when one of the moms who had seen her fall re-enacted the fall I realized that I checked the wrong side.

I lifted the hair off the other side of her face, expecting to see a red mark and that was about it. Instead, I saw a torn ear, blood all over her hair and neck on the underside of her hair. It's so thick and curly that had I not lifted it up, I would not have seen it at all.

Needless to say we missed the meeting and went directly to the Naval Hospital (with all of one doctor in the ER). She was cheerful and chatty until we had to put her in a papoose wrap. 2 nurses and myself held her down while the doctor injected her with a local anesthetic before stitching her up. While they were doing this, she began crying again. She kept saying "ahl gah, ahl gah" (All gone, all done) over and over again, letting me know she wanted out of this. Finally she began crying, MAMMA! MAMMA!

It was beautiful and painful at the same time. She's only recently (as in 2 weeks ago) said MAMA! again for the first time since over 26 months ago. Hearing her cry out for me was bittersweet, knowing that she needed me and wanted me, but yet not being able to give in and take her away from the thing that was upsetting her so much. All in all an exhausting night. My poor girl.

My beloved Amelia - Fall 2011

2012-01-19T21:32:00.000-05:00

We had so many gorgeous school pictures to choose from, but this one really captures an elusive part of her personality. They took these pictures outside in the Montessori school common grounds. I love this picture and it also makes me sad at the same time... she really looks so grown up in this picture.

Steak Sandwich Wrap

2012-01-18T14:36:00.002-05:00

Rafe works just a few blocks from where we live on Parris Island. It has been one of the greatest blessings of our stay here. He used to work at the Air Station, but I like this so much better. He is home for breakfast with us in the mornings and home in time for dinner at night. He also comes home for lunch, which is mostly fun for me to get creative with lunches sometimes since he is so willing to eat whatever I make.

This recipe is adapted from a Martha Stewart recipe from Everyday Food. I didn't have all the ingredients so I subbed with what I had. Her recipe is the original and my subs are in parenthesis.

Steak Wrap

6 slices bacon (subbed 6 tbsp crumbled bacon bits)

1/2 cup low fat plain Greek yogurt (subbed Stonyfield Farm low fat plain yogurt)

1 oz Parmesan grated (1/2 cup cheap parmesan in a can)

coarse salt (forgot to use it)

2 pieces lavosh flatbread or sandwich wrap (used Aladdin Bakes thin plain wraps)

4 tsp Dijon mustard

1 reserved cooked steak, thinly sliced (not sure how much I used, probably about 4-6 oz)

1/2 small red onion, thinly sliced (4 tbsp thinly sliced scallion, white parts)

1 cup baby arugula (2+ cups baby arugula)

The original recipe calls for mixing the yogurt and parm and layering the rest of the ingredients on two pieces of flatbread. I really didn't feel like going to all that trouble; so I just mixed the parmesan, yogurt, bacon and scallion together and made a spread. If I had to do it over again, I would throw in the dijon to the spread as well. I just forgot to until I had already started making the sandwich layers. So the end result.... just spread the mixture, layer with meat/arugula/meat/arugula and wrap. I measured it and spread 4 tbsp on each wrap and had enough spread for 4 wraps. Eat. It makes a huge sandwich. We could easily have split it (we're trying to eat smaller portions). However, we did not and 3 hours later I'm still full.

The reason I layered meat and arugula twice is that I think it made a better mouth full than just a chunk of meat and a chunk of arugula in a bite. Either way works though.

Leftovers - Roast Beef Bowl

2012-01-18T14:26:00.000-05:00

Obviously with a 5 lb prime rib and only 2 adults eating it in the house, we had plenty of leftovers. I also had some leftover caramelized onions so I made a roast beef bowl out of those and today I made a steak wrap.

Roast Beef Bowl

layer of mashed potatoes
layer of caramelized onion
smaller round layer of chunked prime rib
gravy poured over the top

So simple (and kind of obvious) but delicious in a bowl reheated in the microwave. I figured I could make more of those and freeze them if I froze the ingredients separately from one another on the bowl/plate I was freezing them in. The gravy and meat can be frozen together. You can pull the frozen bowl the night before to slow thaw in the fridge before reheating. If you are doing it this way, you might want to actually make much thicker gravy than normal, since the thawing/reheating cycle from frozen will cause the ingredients to release more liquids. That way your gravy will still be thick.

Rare Prime Rib

2012-01-18T14:19:00.001-05:00

About a month ago, prime rib was on sale at the commissary for 5.99/lb. I don't think I've ever made one at home and I thought it would be a nice treat to make for Rafe. So I picked it up and put in the fridge, thinking I would find time to make it that week. Never happened. A couple of weeks went by and our afternoon schedules generally prevented me from making the prime rib for dinner in the normal way (350 degrees, 20 min. per pound). At that rate, it was never going to get cooked! Luckily, it was in cryovac, so the wait really didn't hurt the meat at all.

One day I just decided to go ahead and cook it, working around the afternoon schedule of doctor's appointments and school pick ups outside the house. I took it out of the package, rinsed it quickly, threw it in a 2" half hotel pan, and liberally covered it with California garlic pepper and some kosher salt. I threw the whole thing in a cold oven, turned the oven on to 270 degrees and left the house. When we came back 3 hours later, I pulled it out of the oven and let it rest while I made mashed potatoes, gravy and the veggies for dinner. The bonus to doing it this way (low and slow) was that rather than having the outside cooked well or mid well and the inside mid-rare as is the norm, it was a lovely rare to medium rare the entire way through. One of the most perfectly cooked prime rib I've ever made. My oven runs cold, which is why I cooked it at 270 vs. 250. If it worked well, I'd probably do it at 250. This was a 5lb prime rib, so at that temp instead of 20 minutes per pound cook time, I used roughly 35 minutes per pound.

The Tree as Art Form

2012-01-04T00:19:00.000-05:00

Originally we were going to fully decorate for Christmas this year on Thanksgiving weekend. We (and by we I mean the royal We as I simply watched as Rafe and Amelia did all the work) got as far as putting up the tree with the lights on before deciding it was too risky to put ornaments on the tree or decorations up with ~~Destructor~~ Olivia running around the house.

Somehow over the next few days, decorations still mysteriously appeared on the tree. Every day I'd walk by, only to discover something new on the tree. My photos are terrible, but you get the idea. Toilet paper and paper towel tubes, musical instruments, windmills, necklaces, artwork and toys. This is only the start... as the days went by it increased! She even went so far as to make a Nativity scene at the bottom of the tree using mostly her imagination and just a few items. Apparently I really fell down on the job this year. At least one of us has the decorating gene! She certainly didn't get it from me. Must be Rafe's side of the family.

This one touched me the most... her nativity scene. The nest of branches is the manger, the piece of paper lying on the toilet paper tube is a drawing of baby Jesus and the tube is his crib, and there are drawings of the three wise men, some animals and something else. The big tube is the star in the sky and of course the lovely parents to the left. I think she's got a future in modern art.

These are place settings she made... we all had one at our places at the table.

This was my only contribution to holiday decorations! :)

Amelia and her art

2012-01-04T00:05:00.002-05:00

A few months ago, Mia's art teacher told me in an aside that while she wasn't supposed to have favorites, she really had a soft spot in her heart for Amelia in her class. She told me that she actually had to work on not calling on Amelia first because she was always so eager to do exactly what the teacher asked and with much enthusiasm, and that she was actually an excellent artist. In our house, we have a corner of our kitchen set up as her "craft table" - parts of which have since expanded to shelving elsewhere to hold her supplies. She's always creating something out of the materials around her, constantly surprising us.

Recently, in an order to begin to tame the art monster that threatens to overtake our available storage, I decided to start photographing her art and keeping it that way (takes up SO much less space). In the process of photographing this (and your eyes aren't deceiving you - she created everything backwards):

I discovered THIS:

I'm not sure what it means. And I'm even less sure I want to ask.

On the other hand, I was quite impressed with her cleverness. Until I took the photo and looked

on camera, there was no way to tell that there was a figure in the clay/playdough.

Probably screaming to get out. :)

Soup for a cold day...

2012-01-03T19:54:00.001-05:00

We're big fans of soup in this house. Today was unexpectedly cold and I was able to put together a soup from ingredients hanging out in the house and it hit the spot. I'm also trying to use up all of our pantry and freezer ingredients in preparation for our move this summer. I have to document everything we feed Livi exactly for one week for a study she's in, so I thought I would get back in the habit of writing recipes for the food I make. It will help when Rafe asks me to make it again - for once I can accommodate him! This soup ended up being much more spicy than I anticipated, so the Mia had a cheese quesadilla and Livi ended up with a peanut butter, honey, cinnamon sandwich on cranberry bread. I always told myself that I would not be a short order cook for my kids, yet somehow I ended up exactly that. Ugh.

Andouille, Fennel and Leek Soup
1 tbsp oil
1 yellow onion, medium diced
1 leek, diced and rinsed
1 fennel bulb, cleaned and diced (including stalk but not the fronds)

Heat oil to almost smoke point in a heavy pot (I used my Le Creuset pot again). Toss in the onions, fennel and leek and let sit till they are slightly caramelized (with color on them) and stir. Continue to let sit for a bit and then stir until the vegetables just begin to get shiny.

1 bulb (approximately 17-20 cloves) garlic, minced

Add the garlic and stir. Cook for 2-3 minutes more.

1 lb. andouille sausage, diced (I used Smithfield, nothing fancy)
2 Yukon Gold potatoes, peeled and diced
1 Idaho potato, peeled and diced
1 (14 oz) can turnip greens with juice (seasoned Southern style)
2 Turkish bay leaves
1/4 tsp caraway seed
8 cups chicken stock (I used some saved from a roasted chicken, some from a can and the rest from a paper box)

Add remaining ingredients and bring to a boil. Simmer on very low for one hour. Serve with crusty bread.

Hoppin' John - This year I'm making my own good luck!

2012-01-02T12:44:00.002-05:00

A traditional Southern food for New Year's Day is Hoppin' John, collard greens and cornbread. The foods are supposed to bring good luck in the New Year - beans representing coins, greens representing paper money and cornbread representing gold. It's usually made with ham hocks, beans and rice with a bit of salt.

The leftovers are called Skippin' Jenny. No clue as to why. :)

Many years ago I worked as a Sous Chef at a restaurant in Kansas City called Cafe Allegro. The Chef at the time (Sue Dubowski) is one of the best chefs I have ever worked with - her knowledge and abilities were incredible. I could never be half as creative as the Chefs I worked with, but I always felt blessed to be able to work under them. She created a dish that went on the menu that I still think about to this day - Fried Soft Shelled Crab with Hoppin' John. Her version is the best I've ever tasted. The recipe below is as close to that as I can come. I remember making it one night and asking one of the waiters there, who had lived in the south, to taste it as I was making it. I added and adjusted according to his suggestions. This isn't entirely authentic to what I made that night, but it is pretty close! Below is what I cooked up yesterday; probably not quite the same as all those years ago. In that restaurant, everything was cooked from scratch so the peas were cooked from dry and we used ham hocks and white rice, among other small changes. With 2 kids and a busy holiday season, I just pulled from my pantry. I made a roasted chicken and gave some away to a new mom down the street and we had ours with baked tilapia sprinkled with Paul Prudhomme's seafood seasoning. Rafe loves this - I got an unqualified, "I wouldn't mind having this again" from him. He's a guy who will eat anything I make but has just a few favorites.

I usually serve it with lemons and scallions for garnish, which is definitely not traditional. The lemon really brightens up the flavor of the beans when squeezed over the top.

Hoppin' John
3-4 stalks celery, medium small dice
2 med. onions, medium small dice
1/5 bulb (about 6-7 very large cloves) garlic, minced or crushed
1/2 cup minced ham (or any smoky/salty meat - ham hock, andouille, bacon, smoked turkey, etc)
vegetable oil
Heat oil in heavy pan (I used a Le Creuset big pot) on high just till it begins smoking. Add the celery and onions and let sit briefly to get color on the onions and celery, then stir. Turn heat down and let sit for a minute or two each time between stirring - not enough to burn the celery and onion, but to start to give it some color and flavor. When the celery and onions first begin to get a little tender and brighter in color, add the ham and garlic and stir. Continue cooking till the flavor of the garlic has bloomed.

cooked brown rice
2 cans (15 oz each) black eyed peas
cayenne pepper
When the garlic has bloomed, add the peas and cooked rice. Sprinkle lightly with cayenne. Stir gently and simmer till rice has finished cooking. Add more chicken stock as needed. The end result should be thick and sludgy like, with beans intact for the most part. Season to taste. Serve with lemons on side and scallions sprinkled over the top.

Cooked Rice
1 cup brown rice
2 bay leaves
2 tbsp (approx) dried minced onion
2 cups chicken stock
kosher salt to taste
Cook in rice cooker till almost finished, but still slightly under done. Add to pot of beans to finish cooking.

Marine kids think differently

2011-10-06T08:53:00.000-04:00

It's interesting to me the ways that a personal family culture influences language and thoughts. I see it happen all the time in our family but don't pay too much attention to how funny it is most of the time.

Today Amelia had to do some chores before breakfast (empty silverware from the dishwasher and gather all the towels for washing). She can't reach some of the towels, so a while ago she devised a way to get them off the shower curtains and tall places by using a step stool and a pair of my really long grilling tongs (2 feet) from back in the day when I was still working as a Chef. She pulls them down and sticks them in a big tub and then scoots the tub out to the laundry room to be washed.

About half an hour after the towels were started, she all of a sudden exclaims, "MOMMY! That brown towel is camouflaged! It's on the brown chair and I didn't see it!" She starts giggling to herself and talking about how funny it is that a towel is camouflaged and I am thinking how funny it is that she didn't just say "hidden".

Vietnam Vets: 1st Battalion, 9th Marine Division - "The Walking Dead"

2011-09-25T01:46:00.002-04:00

It's not often that you get a chance to meet a part of living history face to face. This weekend I had both the privilege and the honor to do just that with this amazing group of people.

Through a serendipitous set of circumstances, my husband was invited this weekend to bring us to dinner with the 1/9 Walking Dead Veterans at Traditions while they were here visiting Parris Island.

I told Amelia we were going to dinner with some very special people and we would have to be on our best behavior and use our best manners. I explained a little bit about them to Amelia, at least in small terms a 5 year old could understand easily. I had been promising her for some time that one weekend when we had enough time, I would blow dry her hair straight (never been done and we wanted to try it). After I told her where we were going, she asked me, "Mama!! Could you please blow my hair dry straight?!?" Very excited and wanting to do something special for this dinner. We laid out really cute dresses for Olivia (navy blue polka dot) and Amelia (pink sweater dress)- I wish I had the foresight to take pictures. I pinned a piece of my jewelry to her neckline and Amelia just looked so grownup all of a sudden.

The power went out after a lightening strike while I was drying Mia's hair, and we finished getting ready and went on to dinner by emergency light. As we were getting out of the car, I told Rafe I wasn't sure I could get through the night without crying. Olivia and Amelia were amazingly good, but still restless so I wasn't able to hear or be involved in very many conversations. I listened to bits and pieces float around me, words out of history, battles with place names. We ended up sitting at the back and I encouraged Rafe to sit up front without us, as there wasn't room for all four of us at any one table. I can not tell you how glad I am that he did that. I was able to be there to see him applauded for his role in their weekend; and to listen to many, MANY compliments about my husband and children. Lights finally came on and the girls and I left shortly after that. Living on base is great... we only live a few blocks away from Traditions, so Rafe walked home a few hours later. We were invited back again today for a picnic after Mia's soccer game. Amelia kept saying, "What a special night, Mama!!".

This time I had the foresight to get a sitter for the girls and went on out there with Rafe. The conversations with the wives were profoundly moving in many ways, and both enlightening and comforting in others. These men and their wives paved the way for most of what we know now about the effects of PTSD on the veterans and their families. They went to work every day knowing that someone they knew was going to die that day or they would be asked to do something they would hate.

We have programs in place today to help us because of the injustice and abuse they and their families suffered at that time. They came back from war at a time when they were hated and spit on. The spouses didn't understand what the men were going through and had no tools to help them heal. The men didn't know what was happening to them and refused to believe it.

I listened as some spouses talked about how certain times of the year are harder than others and they matter of factly went down a list of battles trying to remember which one had occurred in that month. Even better was hearing parts of our own current story as a family be told by these women as they recounted their own stories. It felt familiar and strangely comforting.

One of the men told me that 20-30 years ago a woman who had written a book about PTSD was booed and treated terribly at a reunion in DC by the vets because she had told them they all had PTSD and they thought she was crazy. He told me that he wished they had listened to her at the time and it took him over 20 years to get help. His goal was to speak to as many young Marines as he could and tell them to get help as soon as possible, because "it never gets any better, it never goes away" if you don't. He is, and they all are, still dealing with it all these years later, trying to change emotional and mental processes set in place a lifetime ago.

We have programs in place today because of the incredible hurt suffered by the veterans of this era. I heard a story that I knew but had forgotten of how spouses and children had to move OFF base housing every time their husband deployed. Can you imagine that? Their trauma is why we stay on base now, with services to support us, counselors and therapists to talk to and activities for our children to help them understand the story of deployment. We have our own briefs and communities and programs that enrich our lives. They had none of that, but were simply kicked out.

Most of the time, Rafe and I weren't anywhere close to each other. I was actually glad for this... we each were having conversations that we needed to have and to hear about deployments and reunions. Continually throughout the day, someone would come up to me and tell me what a wonderful, honorable, moral, outstanding, etc. man/Marine my husband was. It was actually quite thrilling to hear him be complimented so many times by these incredible people.

Later in the afternoon, I went and picked up the girls and brought them back to play at Elliot's Beach where they were all gathered. Livi made a beeline for the Gullah memorial gospel dance line and inserted herself right in. That group could eat! They had a huge spread of food and finished it up after the dancing with a huge boil of crabs freshly caught by one of the attendees. Amelia found friends to play with and they threw rocks off the point into the ocean as the sun started going down. Again, I was thrilled to receive tons of compliments on my beautiful and well behaved girls; and yes, I am bragging. Amelia even belted out a few OOOOORAH's to the delight of the retired Marines.

Again, I left with the girls to feed them dinner and put them to bed while Rafe went and met them for dinner and talked with them for another four hours. He spent about ten hours today talking and listening; mostly listening.
.
In some ways, the information today I heard was nothing new; nothing that any of us in this day and age haven't heard about the Vietnam era. But it is vastly different reading it on paper vs hearing it come out of someone's mouth, watching their face as they tell their stories, or as they tell any story but that one. It was visceral, immediate, emotional to me, and hugely important to listen and be a part of. I was honored, so incredibly honored to even be in the same room as these guys who have lived this battle for over 40-50 years.

I hope someday I can meet them again.

Whoops!

2011-09-25T00:36:00.000-04:00

Tried to publish some posts that were accidentally left in draft stage and it didn't post them on the original writing date (which I thought it would) but today. If anyone knows how or if it can be changed, I'd love to hear the solution!

Mediterranean Fish Stew with Shrimp and Cod

2011-09-25T00:33:00.000-04:00

1 tbsp olive oil
2 onions, peeled and medium diced
1 bulb garlic, peeled and rough sliced
1 cup celery, medium diced
1/8 tsp fennel or anise seed

4 tbsp tomato paste
2 cans diced tomato plus juice

dry sherry
shrimp stock (see recipe) OR other seafood stock, including clam juice
oregano
1 very large pinch saffron threads
2 oranges, juiced
kosher salt

cod, diced
shrimp, peeled and deveined
parsley, chopped (opt)

chile garlic paste (optional)

Rafe is on his way home!

2011-09-25T00:32:00.000-04:00

I just found out yesterday that he will be home sometime tomorrow or the next day. SHOCKING! I thought he wasn't coming home for a few weeks. It's exciting and nerve-wracking all at the same time.

Part of the fun of homecoming (for me at least) are the activities leading up to the big day; and the anticipation building and building. Amelia and I usually make chains for each day we have left to wait; the yard gets raked and weeded; the house starts getting the annual deep cleaning; the wife starts getting spruced up (after months of benign neglect on appearance) and the little projects get finished up and new projects put on hold in anticipation of time spent together as a family.

This time we are going to miss all that. Right now it's a mad scramble to get ready!!!!

Like most times in your life when you really need life to go smoothly so you can get stuff done, it hasn't.

Livi has been sick for 3 weeks and it got much worse yesterday and today. She went to the doctor today and turns out her ear is infected (thought it was a tooth coming in per the dentist telling us that she would pull her ears when the next teeth came up in a few weeks) and her lungs are full of gunk. She had a breathing treatment in the office and will need breathing treatments every 3 hours for the next few days at least and possibly longer. Not easy to do as she fights the mask so hard.

The girls wet my bed; Livi is pulling everything she can down off of tables and cabinets and toy chests; I had to finish delivering some things donated to a local family in need; spring break and Amelia is home; it's been raining constantly; and I'm in the middle of pulling things out to sell for two garage sales, children's consignment fair, and regular consignment.

He'll be lucky if I shave my legs this time. Welcome home, honey!

Tomato, Feta and Chickpea Salad

2011-09-23T00:07:00.001-04:00

I made a modified version of this salad for dinner tonight. I don't know about Martha's version, but mine came out fabulous and Rafe and I loved it. Amelia not so much and Livi chewed all the flavor out of it and spit it back out. Hard to describe how she does that, but imagine chewing meat until all the flavor is gone and then not swallowing it. Yuck.

Here's my version:

No green beans.
Use sea salt
Zest 1 whole lemon instead of cutting 3 wide strips into matchsticks (can you say GIANT waste of time to do it the original way?!?!)
I got 3 tbsp of lemon juice from .5 of a lemon
4 tbsp red onion (I hate it when a recipe says use a small onion - I'm never sure so I measured this one)
3 oz feta just because
no parsley
fresh basil (approximately 1 tbsp chopped fine)

I made it about 4 hours ahead of time and it tasted MUCH better after it sat. We served it with some roasted chicken breast seasoned with onion, garlic, poultry seasoning, salt and pepper. Delish!

Here is the actual recipe, with my changes:

1 lemon, zested

3 tbsp lemon juice

2 tbsp extra virgin olive oil

1 pt cherry tomatoes, halved

4 tbsp minced red onion

1 can (15.5 oz) chickpeas, drained and rinsed

3 oz feta cheese, crumbled

1 tbsp chopped fresh basil (don't even bother using dried. If you don't have fresh, skip this recipe and make another time)

Mix. Let sit a few hours. Eat.

Edited to add - I ate this for breakfast today and the leftovers were so tasty 2 days later. The flavors really bloomed. The tomatoes looked a bit sad but they tasted fine.

Livi's Speech

2011-09-22T23:55:00.000-04:00

Olivia has been diagnosed with Speech Apraxia, and while I still don't completely understand all the nuances of it yet or how it will affect her long term, the short of it is that she can understand language better than she can speak it. She will often look at you quite intently and seriously while you are speaking, watching your mouth move and sometimes silently moving her lips.

It's interesting watching the process of language develop in such slow motion. Everything about Olivia develops in slow motion and it's quite fascinating in some ways to see how intricately we are made and how each step of our development prepares us for the next task along the way. She's recently begun saying sentences that have meaning only to her at this point. They are short and to the point and often sound very specific but we can't decipher them. She loves to sing and will sing anytime she hears anyone else doing it. She can actually sing more easily than she can speak, and her ST says that is typical of apraxia (similar to stutterers). Still no words to the songs, but she can mimic rhythms pretty well (for her, that is).

Recently her ST handed me a piece of paper with all the words Olivia has said up to this point. There are quite a few more than I thought would be on there; I think 37 words or gestures is what Janet (her ST) told me. It was both refreshing and sad to see the paper... more words than I thought, but so many of them said only once or twice. I haven't heard a clear "mama" since last November.

Our next goal is for her to say 2 and 3 words together. Since I've been given the piece of paper to tape up and write on, I've found myself listening closer to her babble, as has Rafe and Amelia. It's only been 1 day, literally, and we've written down 3 things. This morning she went to wake up Amelia right after Rafe did, and she made a kissing sound and said "a(k)e uh" (wake up) as she touched Mia. At the store today she grabbed a plantain and said, "Ooo! Uh(k) aa aaa(d)" (look at that). Those are things we count as speech, surprisingly enough. Janet keeps reminding us that speech is communication and although we can't recognize it, she is speaking and forming sentences. Her favorite thing to say is "If you think you heard it in context, you did!"

Kindergarten

2011-09-22T23:40:00.001-04:00

I think Amelia is a bit ambivalent about Kindergarten. She was so excited this summer to FINALLY be a kindergartner and begin teaching the younger children and doing the kindergarten work. But now that she's finally arrived, she's having mixed feelings.

The first week she told me Ms. Avril, her beloved teacher since she was 3, made her cry. This is curious, since Ms. Avril is one of the most peaceful and loving human beings you will ever meet. As it turns out, Ms. Avril did make her cry --- she told Amelia she had to do some K work and could no longer choose just the "little kid" work as Mia calls it. It was too much for her to take, leaving the comfort of the familiar. It was good that she got that little push and she soon began enjoying giving lessons and doing new work with the math.

Today I happened to check the work of a little friend of hers in another class and there were tons of math papers in it. I asked Amelia if she chose a lot of math work this week. She immediately said, "Oh sure. I did.".

Then a pause. "Well, just a little."

Another pause. "Perhaps I didn't choose any math work this week"

I love the way she uses Perhaps. It comes out a lot when she's talking to us and never fails to make us smile. I'm pretty sure she got it from Ms Avril, who is South African and speaks in a clipped, warm British (to my ears, but actually South African) accent.

Then she showed us the globe she had made instead - push pinning all the continents into shapes, gluing them in the right place, labeling them (is that really her handwriting so neat already?), stuffing the globe and then finally sewing it after it was laminated so it could be hung.

Perhaps no math, but lots of Kindergarten :)

For My Brother(s)!!

2011-09-22T23:31:00.000-04:00

Hi Paul! Hi Todd!

I'm not sure Todd actually reads this but wanted to give him a shout out too :)

I love you guys! I especially love listening to the two of you talk and tell stories at the same time, half laughing, half being serious. It reminds me of growing up, going to Uncle Mike's and listening to all the relatives sit around talking and telling stories about their lives.

2011-09-02T22:47:00.000-04:00

Amelia says a million amazing things every day and I always forget them come night time. I've rarely written them down, much to my dismay.

Tonight she said something really funny. She was playing with a bouncy ball Asa had won for her out of a toy machine years ago in the bathtub and then after a while, lay on her back and floated in the water. Out of the blue a few minutes later, she said "This ball loves me!". I thought for sure I didn't hear her correctly, so I asked her how she could tell the ball loved her. Her answer?

"Because it keeps trying to get next to me".... it was floating in the water next to her and bumping into her. How funny the way her brain works.

For my sister...

2011-08-26T08:10:00.000-04:00

HELLO, LISA!!!!! I LOVE YOU!!

My sister recently informed me that she checks my blog every.single.day. even though I haven't written anything since Rafe came home from deployment. It's been an extremely busy few months, both with Olivia and re-integrating as a family. So here's me, dipping my toes back into the water of blogging again and saying hi to family and friends!

To anyone else who is reading this, actually everyone... I am asking for prayers for complete healing for my brother Paul as he recovers from surgery to remove cancer!

Husband came home 3 weeks early!!

2011-04-21T23:45:00.000-04:00

And that was 2 weeks ago!! So I have been very slow on updating posts lately. We should be back to normal around here (or at least our new normal with Daddy home) in another week or two.

Amelia says...

2011-04-18T01:54:00.000-04:00

Some of the things that come out of her 4 year old mouth blow me away. What mom doesn't love to listen to her kids speak and get an insight into their minds? It's fascinating to me. I wish I had a little magic tape recorder to carry around that I could download all pertinent conversation at the end of the day and save it forever. I'm terrible at remembering to write it down, usually.

She's been noting things on the road and telling us what a "clever idea" that was lately. Today she noticed a girl riding her bike on the sidewalk instead of the road and said, "Wasn't that a clever idea for her to do that, Mommy?" I think she thought this was clever after we followed behind a cyclist on the busy road yesterday and she was very worried for his safety.

They are doing some construction work on Parris Island and have blocked off some roads partially to work for safety. She also thinks that's "very clever of them, Mommy".

Today we're getting ready for an Easter Egg hunt at church and she wanted to pick out some "sparkly shoes that were click clacky." She said it sounded like her shoes were happy and singing when she walked in them. After she put them on and walked around, she was delighted - "OH MOMMY! They DO click clack!!! I knew it!"

Breakfast Eggs

2011-04-18T01:34:00.000-04:00

I had a Japanese sweet potato hanging out on the counter that I bought on a whim the other day. This morning, I was trying to think of what to make Rafe for breakfast (we were out of almost everything) and thought to throw together some things I had laying around.

I roasted the sweet potato, cut it in slices and layed it randomly in a teflon omelette pan (super heated with oil and a touch of browned butter). In between the slices, I sprinkled chunks of cooked chorizo sausage and topped that with some caramelized onions leftover from last night's dinner and seasoned with kosher salt and garlic pepper.

I put the whole pan in the oven for a few minutes till the onions were hot, then sprinkled it with a chiffonade of fresh spinach. I heated the spinach up in the oven for another minute, then poured 2 cracked eggs over the top and back in the oven it went! Once the whites were set, I took it out and slid the whole thing onto a plate.

The eggs are amazing, by the way. We buy them from a local military family who raises their own chickens naturally. They deliver to our door for $3 per dozen. The eggs are extra large and the calcium in these eggs is so high the shells are actually hard to crack! Much thicker than normal eggs. The yolks are brilliant orange.

Anyway, it came out as one of the most delicious tasting breakfast we've had in a while. The sweetness of the caramelized onion and potato mixed with the spicy chorizo and spinach were great. It was almost too sweet - I might like to try this again with just regular sauteed onions and not caramelized, even though I never add sugar to the caramelized onions anyway - it's just naturally sweet. I think the balance of flavors would be slightly better.

Gadget Overload

2011-03-28T22:59:00.000-04:00

I've taken Amelia to the park out in town recently several times and I'm always saddened by something I see. Invariably there is at least one or two parents, more if it's a busy day, chatting away... on their gadgets. Looking down, texting like crazy, half hearing their kids and only glancing up occasionally to check on them.

It doesn't seem so bad when the kids have a few other kids to play with, but when it's obviously only one child with his or her parent it really breaks my heart. I watch the kids try to get their parent's attention - "watch me, daddy/mommy, watch me!", "play with me", "swing me" - over and over again only to see the parent not really look up.

Do they really think their kids can't tell they aren't giving them their full attention? Do they expect their children to grow up to be teenagers and adults and act completely differently than the behavior they see modeled right now? It's like you are sitting there telling your kids, "You aren't really that important to me, and definitely not as important as the other people I am talking to right now"

I do know that it might be the a conversation with other kids/spouse/doctor that is important. But there aren't that many urgent conversations that would make that many people sit there and text away for almost an hour at a time (at least) to all their FB and online buddies. When your gadgets become more important than your kids, you have a problem.

It's lead me to think of something else - the computer behavior I model in the house. I take breaks to check email from Rafe, Olivia's doctors, other info needed throughout the day. I need to make sure that I am on there for a real reason and keep it as short as possible when we are having our free time together. That's not to say that when she is playing independently or we are having alone or personal time that I shouldn't be on there; but how do I want to model the attentiveness I want her to pay to my interactions with her? Her time after school with us is limited before she goes to bed, and I want to make sure that our time with each other is meaningful family time, and not all of us in seperate corners hooked up to our gadgets vegging out.

Something I read today reminds me to limit computer time for my kids as they grow older. The implication that their social and emotional development will be guided by internet media isn't a comfortable one.

Facebook can lead to depression in adolescents
The researchers say a "large part of this generation's social and emotional development is occurring while on the Internet and on cell phones."

Indignant Amelia

2011-03-28T17:55:00.001-04:00

Amelia just came stomping into the livingroom with a fierce look on her face, hollering "Momma! Stop putting your big things on my craft table! That's how I can't find things when I want to, ok? :::heavy sigh:::"

As Mom and I are cracking up, she got even more upset - "This isn't funny!" Which made us laugh all the harder and eventually she started laughing too, before remembering she was mad and scowling at us again and stomping off.

My big thing on her craft table? It was a giant stock colander (like a restaurant uses) that I put there to finish drying before putting away.

Scenes from a life

2011-03-23T00:56:00.000-04:00

Princess Biker Fairy

Earning money for her bike by cleaning the stroller

My girls tinkling the ivories

MUSC campus in Charleston - going for a dental appointment with Olivia.

The city is blooming and beautiful.

Sauteeing oxtails for a braise

Some of the ingredients going into the braise... the gelatinous stock is actually leftover pan juices from a roast, chilled overnight and defatted. Easy stock.

Amelia's rendition of a "happy toaster with legs" - drawn for a dear family friend

Saying goodbye to good friends

Looking for a way up into the high chair

Playing dress up with friends

Temperature Dysregulation

2011-03-23T00:21:00.001-04:00

One of Olivia's many issues is Temperature Dysregulation. She might grow out of it, but probably not.

Patients often have some dysregulation of temperature, in which the baseline body temperature often measures in the 96s and 97s and sometimes lower; temperatures can drop even lower during the night. Less often, temperature values at baseline run higher than normal. This is a particularly important piece of information when assessing a mitochondrial patient who is sick with infectious symptoms. An apparent "low-grade" temperature of 100°F may be dismissed by an unknowing pediatric practice as being insignificant. However, if the patient's baseline temperature runs at 96°, such an impression may represent a mistaken conclusion. Autonomic dysregulation article here

What this means in practical terms is that yesterday her temperature ranged from 77 degrees (her feet) to 101 degrees (under her arms)...all at the same time.

Her base temperature used to be around 96, but I've stopped checking it the last six months and no longer know what it is. She seemed to be doing a better job regulating her temperature.

But this past week has been doing a number on her.. she doesn't do well when her routine of sleeping and eating are disturbed; and we've been outside a lot in the growing heat. We sleep with the house at 66 degrees at night and keep it around 70-72 in the day. It is far easier to keep her warm than it is to keep her cool. At night, she doesn't really move once she goes to sleep, so that heat accumulates under her body and around her and she gets really hot. After waking up from her nap yesterday, we took temperatures because she seemed so hot on her tummy and back and they were all over the board.

So now it's time to start packing ice packs/wet cloths/coolers everywhere we go as the weather gets warmer. We're going to the zoo next week and it's going to be tricky to keep her cool.

Olivia's Blue Eyes

2011-03-21T11:10:00.000-04:00

There are no seven wonders of the world in the eyes of a child.

There are seven million.

~Walt Streightiff

This is a straight out of the camera shot of Olivia - I was trying to take a picture of Olivia's face to document an allergic reaction to something. I don't know why this is the first time I've seen her eyes so clearly - I had no idea they were so beautiful.

More sewing with Grandma

2011-03-20T01:08:00.000-04:00

Imagination Station

2011-03-19T23:53:00.000-04:00

She's playing in the rain, right outside our kitchen window. I tried to catch her singing to her "animals" (acorns), but only managed to get the tail end of it.

Sewing with Grandma

2011-03-19T23:40:00.000-04:00

Learning about selvages

Taking a quick break to play in the rain

Back inside, pinning the fabric

She did a great job! Very concentrated in thought.

Starting and stopping the machine while Grandma is sewing; later she was doing some of the sewing.

At the local beautician's...

2011-03-19T23:27:00.000-04:00

She even fixed her own hair - but why she decided to put a cotton face pad

under her hair band is anyone's guess.

Cooking with Momma

2011-03-19T23:20:00.000-04:00

We're making Beef with Broccoli and she's stripping the leaves off the broccoli.

Ta-Da!!!

Hard at work

Instinct for the Beautiful

2011-03-19T00:29:00.001-04:00

Rachel Carson
"A child’s world is fresh and new and beautiful, full of wonder and excitement. It is our misfortune that for most of us that clear-eyed vision, that true instinct for what is beautiful, is dimmed and even lost before we reach adulthood."

Amelia loves being outside and collecting her "treasures". Every day she brings me something she collects because it's pretty or it smells good; many times her treasures are carried all day long in her pockets waiting for the moment she can share them with me. "I got this just for you, Momma! Smell how good it smells! I knew you would like it." She finds beauty everywhere. This is her little table full of things she loved this day - a stick of cedar, a few blooming purple flowers (weeds) and a candle that smells like fresh air and ocean.

On this day, she dragged home (and made me knock one extra out of a tree) some fallen palm branches to make this little house. Later she took the branches down and made a secret entrance to the stairs with them by placing them between the posts on top of the railing. To get in the house you have to crawl under them.

CDC Success!

2011-03-19T00:10:00.000-04:00

This morning was a bit hectic loading all of Olivia's stuff into the van (including the high chair); but well worth it in the long run. The nurse was there when I showed up and took Olivia directly from me while I was bringing in everything. I noticed she took her and played with her a bit, showed her a fish tank, and sat with her in the room to play with Olivia on her lap. As nice as it was, I am assuming she did it to get a feel for what Olivia's capabilities are. I later found out she stayed a couple of hours at the center and was there when Olivia's meds were drawn so there would be oversight.

Susan (our cognitive therapist from EDIS) was there after lunch and checked in on Olivia and the classroom to make sure things were running smoothly. She later called me with an update and report on how things went.

I went to go pick her up and the staff all told me how much they loved having her and what a great baby she was and to bring her back anytime... I think they were vastly relieved to find out how normal she is. The caregivers in the room told me they hadn't expected her to be so mobile and to be able to sit up. Not sure why they felt that way; I told them she could sit up but could not sit alone on a chair- she would fall over. It's not that she doesn't have the muscle strength to sit on the chair - it's that she doesn't understand how to sit on a chair. She can't keep her balance because she's not sure where her body is at in space on a chair yet.

The greatest thing about the CDC today was the caregivers telling me she was repeating sounds they made and babbling a lot; and she waved "bye bye" on her own to a woman she didn't know who was leaving the room. SHOCKING. I am so impressed! I talked it over with Susan and mentioned that I thought it would be a good idea to bring her there once a week for socialization and she agreed with me. The only negative was that she didn't sleep at all. They could not get her to lie down.

Oddly enough, when I brought her home and put her down for a nap, she only took about 1.5 hour nap. She woke up ok, but really reacted poorly to situations in the house. She actually got a frown on her face and cried, a real fussy cry, for about 15-20 seconds several times when she was with mom for no apparent reason. It honestly startled the heck out of both of us, and we started checking her whole body over to figure out what was wrong. She turned out to have an enlarged node on the back of her neck/head area. We called the doctor and were told it was a "shoddy lymph node" and to just watch it. I'm not even sure what that is at this point.

All in all, a busy day. I took Amelia to a going away luncheon with bouncy house for the woman who coordinates playdates in the neighborhood; then drove her over to Creative Stitches to finish sewing her shorts with Grandma. After they came home we went to an Oyster Roast put on by the battalion at Elliot's Beach, complete with another bouncy house and bonfire.

Mixed Reactions

2011-03-18T01:15:00.000-04:00

Lately when I see videos like this, I have very mixed reactions. The kids are cute and hilarious; but I always find myself a bit stunned at how animated and interactive they are. Their faces are so expressive, their reaction time is so quick, and their noises are loud and specific. It makes me sad for Olivia.

SNERT

2011-03-16T01:50:00.002-04:00

We had our first SNERT yesterday for Olivia.

The Marine Corps Special Needs Evaluation Review Team (SNERT) consists of qualified personnel whose goal is to make an assessment of the accommodations necessary for a special needs child to participate in Marine Corps Children, Youth and Teen Programs (CYTP) and to determine the most appropriate placement for the child. An installation’s SNERT reports to the installation commander and includes, at a minimum, the CYTP Administrator, EFMP Coordinator, medical personnel, parent(s), the child or youth when appropriate, and other applicable CYTP or community agency personnel.
Children who require medical or educational intervention, assistance, or other accommodations are eligible for services. This includes, but is not limited to, children with autism, asthma, allergies, hearing impairment, orthopedic impairment, developmental delays, behavioral issues, specific learning disablement, and mental, physical, or emotional challenges. Upon request for services, the SNERT will make an assessment of the accommodations necessary for a special needs child to participate and determine the most appropriate placement.
Parents can read Marine Corps Order P1710.30E, "Marine Corps Children, Youth and Teen Programs," 24 June 2004 for more information on SNERT.

Currently with my husband deployed, my mom is my respite care provider. She's received permission from his CO and housing to live on base with me and it has been invaluable for Olivia's care and therapy. I think she is MUCH farther ahead than she would be otherwise because of the level of care and therapy she is receiving from both of us on a daily basis.

I want to take her out to thank her, and give us both a day of fun filled relaxation with no kids. But.. SHE is my respite care provider. So I looked into putting Olivia in the CDC (Child Development Center) on base for drop in care and found that I needed to do a SNERT to enroll her.

It was a little surreal - kind of like an IEP meeting for preschoolers. The director of the CDC was there; a representative from the EFMP office (Exceptional Family Member Program); and a nurse. I was told that a representative from EDIS (Educational Developmental Intervention Services) would also be there, but I think she was unavailable on such short notice.

The director interviewed me and asked me about Olivia's medical history and potential issues. It was hard to explain what was wrong with Olivia, because while I was stating the facts, she actually does better day to day right now than it sounded. It was sort of the feeling you get as a special needs parent when you think your child is doing great and your life has settled into "normal" right up until you go to the doctor's office and they make you fill out the questionnaire on developmental milestones - and you realize how far behind she really is. The director sounded really anxious and nervous, and every time I told her something it seemed she worried more and more. The CDC's have only recently begun accepting federal money for their food programs and so they have to abide by the disability inclusion laws for education. Prior to that, they did not.

The nurse kept trying to talk me into having Olivia taken care of at a local family provider home on base - basically a home child care business run by a mom. There are quite a few providers on both bases available for this option.

The EFMP director is AMAZING and she actually has seen Olivia in action. She was there basically to observe and facilitate as needed for my rights. She kept quiet most of the time, just listening as we went back and forth between the director and the nurse and myself. I had to keep saying things like, "Ok, let me wrap my mind around this and make sure I understand you - You are telling me that you are uncomfortable with your ability to supply her needs and take care of her at the CDC and you want me to take her to a Family Home Provider instead" (which is illegal). The nurse would come back with, "Well, I just think you would be happier if you took her to a Family Home Provider who could provide a more individualized level of care because there are less children in the home". It was all very tricky and subtle how they worded things.

I really wanted her in the CDC for several reasons, not the least of which was socialization with other children her age. We've had to keep her seperated for so long because of health issues, I really think she needs to be around a lot of other little kids close to her age. Finally the EFMP rep stepped in and said one sentence and they sort of all fell in line and agreed to have her come to the CDC. They want me to put her in care this Friday for a trial run while I am still close by in case anything happens they have questions about. It's all so strange to me - they called me 3 times after I left the meeting to ask questions about her development level and kind of sounding panicky every time I gave an answer.

Here are some of the issues they had:
Can she sit in a chair (the other kids sit in chairs and self feed)?
Can she drink from a sippy cup?
Can she have the lunch they provide?
Can she eat solids?
Can she follow their schedule?
Can she sit up?
Can she feed herself?

They really didn't give me the impression they were too thrilled with having to do the extra work it would take to have Olivia there - feed her by bottle, feed her by spoon, put her in a high chair, etc. They actually asked me to bring my own high chair. I am providing the food, the spoon, the milk in a thermos already mixed in bottles, the bib for her.... It sounds like this huge deal and really it's no different from having to watch an 11-12 month old.

It's official - I'm twice as stressed as everyone else...

2011-03-07T00:49:00.002-05:00

Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children? In addition, parents with disabled children already report a 10% higher number of stressors then the average parent. Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!

This is from the Foundation for Prader Willi Research - Canada.

I heard that statistic very early on after Olivia was diagnosed with PWS. At the time, I found it very hard to believe that a PWS parent could be more stressed than any other parent of a disabled child. It smacked of hubris to me and I thought that either the person quoting it misheard the original information, left out a word, or just "felt" things were worse.

I don't believe that anymore. Although it feels kind of wrong for me to admit this - I've never been a big fan of the whole game of "my stress is worse than your stress" or "my problem is worse than your problem" or worst of all, "my husband's deployment is worse on me than your husband's deployment is on you"; I can understand a little bit of why PWS feels a little worse. While it is not true in all cases, there are some things unique to PWS that are not encountered in any other disability that I am currently aware of.

It's the food. Always the food.

If you think we're a food obsessed culture now, wait until you have a food related disorder and then you will realize you can barely go even a few minutes without thinking, hearing, seeing, smelling food in some way. Everyone is talking about food - using food for motivation or discipline; as metaphor for hospitality, love or caring; as a tool for health or fitness; for familial or community bonding; for tradition or cultural reference; for hobby and relaxation; for business deals and entertainment; as a story-telling tool in parables and books... the list goes on.

In our family, even before Olivia, we really limited the amount of sweets and snacks we have in the house. I don't really buy junk food; and by this I mean cookies, chips, candy, snack crackers, cake or sweet bread mixes, etc. It's not that we never ate those things, but they were eaten sparingly and rarely, and mostly at other people's houses. About two years ago I started collecting all the candy that Amelia was being given at various functions and put it in a clear plastic shoebox. Every time she received treats, she could eat one or two and the rest went into the shoebox for special occasions. I've periodically dumped out a bunch of it in the trash and yet the box has never gone empty.

Even though Olivia doesn't have the extreme hunger YET, I find myself constantly confronted with situations now that I find stressful because I am so much more aware of food that I never noticed before. Today at church really brought this home to me.
We go to church and there are candy dishes everywhere, filled with peppermints. I can't get into church without fear that my 4 year old will have a screaming fit because she sees candy and wants a piece of it. I want to tell her no, but I created a bad habit/expectation by letting her have one piece of candy when she comes in the door so I can speak in peace to the people around me. If it was never there at all, I would have NO problem with her whatsoever, I could still speak in peace. It's the temptation that causes a problem for my four year old.

Then once in church, there are donuts at the back. They are such a treat because we never buy them, and I allow her to have one donut before we sing for praise and worship time. She constantly asks if she can have one more but always accepts the answer is no.

I take her to her Sunday School class, and the first class that is her age rewards the kids with a small amount of goldfish. I don't like it, but at least it's not sugar.

I started going earlier, and last Sunday was shocked when I went to pick her up from her new class when I found out she had a paper bag full of candy and other goodies she "earned" by answering questions. A sack. Maybe it was 6 things, but when you need a sack to carry the sugar, I think it's too much. The teacher told me it was a special class and that wasn't normal. I didn't know ahead of time that is how things worked and it never occurred to me to ask. I forgot between last sunday and this sunday and she went again to the early class. When it was over, she came running out with more candy for answering questions correctly. Only two pieces this time, but .... then the inevitable questions. Can I have it? Now? If not now, then when?

It's so frustrating because we're only trying to keep her a bit healthier and away from the national average of 122 pounds of sugar eaten yearly per person.

"As little as 100 years ago, it is estimated that Americans ate around one pound of sugar a year." (Dr. Scott Olsen) Teens eat even more sugar than adults, and we want to establish healthy habits for her very early on.

It will be easier to stick to what is healthy than to retrain her as an adult to not eat unhealthy foods... think of your own diets and food downfalls.

So all that is only the background for what comes next.

It's everywhere. EVERY. WHERE. So pretend that you have a crack cocaine addict that is attached to you with handcuffs. You can not go anywhere without this addict by your side. It is your job to make sure that the cocaine addict behave him or herself at all times; use proper manners; use appropriate language and social skills; have appropriate hygiene; be pleasant and fun to be around.

Everywhere you go, someone offers you some cocaine. You don't have the same problems with it, so you just say no. It's left on the counter in front of you in case you change your mind. You open a book to read a story to your companion and there are pictures of cocaine everywhere, stories with long descriptions of how wonderful cocaine is as part of the storyline or even background plot. Listen to the radio and you will hear whole programs on cocaine.... you get the idea. All the while your companion is expected to not indulge, to control him or herself, to behave like a normal human being with no problems.

Only it doesn't happen.

How do you operate as a normal family around the dinner table, laughing and talking and preparing dinner together when you have to watch like a hawk what your PWS child is doing in the kitchen? It takes a joyful, everyday event and creates a tension and stress filled one. Even if you have a system in place, I would imagine how guilty I would feel knowing I won't be able to feed Olivia as much as she wants to eat. It has the potential to create eating disorders in other family members that would never have existed otherwise because of the ritual/cautions needed around food of all kinds and the tensions that result from that.

How do you go for family vacations with your extended family? How do you stay at houses that don't have food locked up? Will I ever be able to visit my brothers or my sisters or my parents at their house again without stress of where she is at every minute? How do I go grocery shopping when I have to take her with me?

Most of all, how do I balance my love of cooking with my oldest daughter (4 year old Amelia) and all that we will cook together in the future in shared companionship - creating an intimacy in that area that Olivia and I will never know together - without making Olivia feel left out and left behind?

Not only do you have to control their eating habits and calories, you have to control your own and that of your family. You can't indulge in an ice cream sunday for dessert for the whole family when your child can only have 700 calories total for the day. In order for your child not to feel left out or a burden or unfairly penalized, everyone eats the same thing; only you have a few more calories on your plate. The food becomes much healthier but you will leave behind a lot of old family favorites and traditions. You can't just swing into a restaurant or fast food place when you are running late because the caloric content is too much for your child.

In the end, I think the intense stress comes from a variable that shows up in so many unexpected places, in so many unexpected ways, and yet is essential for both physical and social life.

I don't think I explained this very well as I read over this but I'm tired and done for tonight. And I am so tired of seeing junk food and candy EVERYWHERE. And a whole other rant.. why do we reward kids with food anyway??? ... saved for another time.

***EDITED TO ADD: I've had so many comments, both public and private, on this asking to link to this page. You are welcome to link to it; thank you so much. Please let me know where you link; I love to read other's blogs. It helps to know it's not just me that feels this way.

Listen for it!!

2011-03-04T02:10:00.000-05:00

Every day my oldest says something cute and every day I forget what it was when it comes time to write it down. Not this time, my friends!! She had me and mom doubled over in laughter.

And yes, of course, it's potty humor. So if you are like the pre-mom me and don't get the funny-ness of this, skip ahead to the next post.

We're both talking as she runs into the bathroom and sits down. All of a sudden she says, 'Shhhhhh, Momma! BE QUIET" in a stage whisper. I ask her why, and she says very dramatically, "So you can hear the PLOP", still in a very loud whisper. I thought I heard something and wanted to get the heck out of there, so I said, "Oh, I hear it!" and started to head out the door. She replies with disgust - "Noooo! That's just a bubble in my bottom!"

Everything Becomes a Therapy Tool

2011-03-02T21:58:00.001-05:00

Olivia stood for 2 seconds yesterday and for 6 seconds today, barefooted. She's 18 months old.

She's fascinated by the open dishwasher. When I'm loading it, I have to be very careful of where she's at - she'll hear it and crawl to it as fast as her legs can carry her. Yesterday I had a blast watching her have fun pulling the clean dishes out of the bottom rack - they were simple plastic things like strainers, measuring cups, etc. and laughing.

I know I should have stopped her, but I kept thinking, "THIS is GREAT therapy!!!" She would pull herself to stand, reach inside and grab something with one hand, while barely holding on with the other. She was shifting her weight from side to side and balancing her core. The bottom rack would slide in as she leaned forward, so she had to figure out how to simultaneously pull it out, hold her balance and grab. She reached for a whisk she really wanted and stood for two seconds putting both hands on the whisk before plopping down. Today she grabbed the same whisk again and managed to balance herself while holding it for six seconds.

Yes, I stood there and counted and waited for her to fall.

It's amazing the development I took for granted in Amelia comes in so many tiny steps when you see it in slow motion, as I do with Olivia.

Love my girl's imagination...

2011-02-26T21:33:00.003-05:00

Amelia is wearing an apron she put on earlier in the day to clean with. She was scrubbing down her police car outside (note the Kearney Jr. Police badge she is wearing up by her neck). She took a break to play house with her roly poly guys - they are all looking for the treasure in the clouds (a blue ring in cottonballs), which is right outside their house that looks suspiciously like an old diaper box.

She's got quite the style. Note the zebra hat and the feather boa on her baby. No sensible shoes for this girl!

Scenes From a Low Country Oyster Roast

2011-02-26T21:13:00.000-05:00

This entire ALL you can eat oyster roast was only FIFTEEN DOLLARS.

Amelia, loving her oysters. She will only eat "the little, cute ones", according to her.

You're making Momma proud!!

Oysters roasting on a metal rack, covered in a wet cloth

Shoveling the oysters into buckets to dump on the tables

Frying turkeys

Grilling hotdogs and pulled pork

Roasting marshmallows for s'mores

Digging in at the oyster table

Sacks full of oysters and wood on a trailer

Bring your own gloves and oyster knife;

table is full of hot sauce, paper towels and cocktail sauce

The emptied oysters get dumped in buckets, and the buckets dumped in wheelbarrows.

They are then recycled back into the water to grow more oyster beds.

All you can eat oysters; still more sacks waiting to roast

Sitting by the fire, pulling pork; oysters roasting under the cloth

Everyone is eating plump oysters, chili, hotdogs, chicken mop, fried turkey, pulled pork,

brownies, chocolate nut cookies, crackers, drinks, and s'mores. Mom and Olivia are right in front.

The end of the night; sitting around warming up by the fire.

It's around 60 degrees by this time.

First moments with new SMO's

2011-02-25T12:53:00.000-05:00

Olivia has never worn shoes and she's almost 18 months old. She doesn't walk so I didn't really see a need to buy expensive shoes she would just grow out of quickly. But this week we did get some special supports for her feet to help stabilize them and her ankles so that she could learn to walk. Here she is with our Occupational Therapist right after we put them on her.

Kissing the Birdie

2011-02-25T12:15:00.000-05:00

Working with the cognitive therapist taking birdies out and putting them back in

My New Administrative Assistant

2011-02-24T01:52:00.000-05:00

She's at it again... helping me sort my mail!

Sunny Day at the Park

2011-02-24T00:01:00.000-05:00

Amelia loves her hats. She's become quite the little model when the camera comes out. I don't even know how she knows to make these cute gestures, but this was the first I'd seen them. It was 74 degrees out yesterday and a lovely day!

Favorite Therapy Tools for the first year of PWS

2011-02-23T23:47:00.000-05:00

When Olivia first came home from the hospital, she could not move purposefully. We had tons of physical, occupational, cognitive and speech therapy for her. All the therapists would give us a different area to work on during the week - homework so to speak. Our cognitive therapist gave us this book so I could find a way to sing and play with her. It was a great book - shows the actions to take with the words and lots of childhood rhymes. One of the best things about it was that my brain was overloaded with all the information I was learning about PWS, and my physical time was taken up with taking care of her. I had very little mental or emotional energy left over just to play, and I definitely had zero creativity. This book was great for that.

She also gave us the bird. It's a very old fashioned toy, and if you ever see it, snatch it up. It has a deep toned, very pleasant sounding bell inside that dings when the bird is moved in any direction. It's extremely easy to move. In order to encourage Olivia to move, I used to place it between her thighs as close to her crotch as I could as she laid on her back. Again, this was in the not moving much at all stage. She couldn't lift her head nor did she have the strength to hold on to even the simplest of toys, literally. Her legs were the strongest part of her and they would occasionally move, or she might squirm with the slightest of movements. So anytime any part of her moved, this bird would chime. It was an immediate feedback for the tiniest of movement on her part. She loved this bird, and it would come into play during therapy in all different ways during the past year.

The other toy with the multiple birds is extremely easy to move. With the slightest touch, the birds twirl and the toy rolls. Again, this provided excellent feedback to any of her movements and encouraged her to move when she would accidentally touch it.

The last toy that is her favorite is not pictured here. It was examining room table paper - the paper from the table at the doctor's office. I noticed that every time we took her there (weekly for the first two months), it seemed to be the only time she really moved was on that paper. It's so noisy and crinkly, and again it provided loud, fun, immediate feedback to her movements. So I asked them if they would give me some of that paper to take home and they gave me a small roll of it. I would tear off sheets of it and lay her on it for tummy time or for back time and watch her try to move more to make noise.

Time to move on, toys!!! I donated them all to EDIS. She's on to bigger and better things.

She says Dada!

2011-02-23T23:29:00.000-05:00

18 months old (15.5 months adjusted age)

It's not the first time, and it won't be the last...

2011-02-21T23:44:00.004-05:00

From PWS Mom blog:

She asked what Prader-Willi was and I briefly explained that it is something that affects the brain and makes it so you never feel full.

She said laughing,"Maybe that's what I have."

I kind of chuckled to be polite but I still cringe every time someone says that to me. They are joking of course. But I don't think it's funny.

This really hit home with me. I've had this exact same conversation and thoughts a few times already with people who mean well.

I cringe also... for the person who said it; for my daughter; and for the person I used to be who might have said the same thing - not knowing the sickening reality of PWS and not aware of how hurtful a light comment can sometimes be.

She's quite proud of herself....

2011-02-20T01:05:00.000-05:00

"Who says I have low muscle tone?

Hmmm, I wonder if Mommy will notice that I just dumped over the laundry..."

Ooops! Caught!

Maybe if I smile real big, she won't notice the laundry on the floor

Crazy Communication Milestone Day!

2011-02-17T00:19:00.000-05:00

This past year and a half has been difficult in more ways than one. Only recently did I realize that I really had hardly ever written down any milestone that Olivia has reached; so when I look back I am only sure of the specific date for a few things. I'm really going to remedy that going forward.

Today was just a strange day in a really good way. Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded. It was as if her body and her brain finally realized she could move and do so much more than just sit there. It took her almost a week to try and venture out of the area we did her therapy in all the time. At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther. To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room. Now it's thrilling to see her try and follow us from room to room. She still doesn't do it as much as I would like, but it's neat to know she wants to be with us.

Earlier this week, Amelia was playing dragon and roaring alot. Sunday, right after Mia roared, so did Livie - who was right next to her. It was so funny! She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again.

About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since. Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times. She doesn't really say mama a lot, but she has been able to say that one for a while. She also has tried to say "eat" but with no sound coming out. It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut. She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e". Try it and you will know what I am talking about. It's kind of funny that she mimics the movement but can't quite get sound to come out. All of these words are approximations, but they are in context and I will take it!

Our speech therapist is really an amazing woman. We have been so blessed with our therapists. She has so much knowledge and explains so much to us. Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences. It's neat to see Olivia starting this process. It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are. I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech.

She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps. She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them. She bounces constantly and has been pulling herself to stand everywhere trying to reach things. She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old. She's WAY more inquisitive than I remember Amelia being at this stage. Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more.

Olivia also walked today with a toy walker! Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it. She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again. She was going from the therapist to myself and back again. She was exhausted after therapy was over and slept an hour longer than normal for her nap.

This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that. I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier. We just didn't have an endo that was current on PWS at the time, but now we have a great one.

Top Ten Good Things About Prader Willi Syndrome Babies

2011-02-14T23:11:00.002-05:00

1) When she was first born and didn't make any sound and slept anytime she wasn't being stimulated, it was easy to take a nap. Theoretically. If it wasn't for the enteral pump, bottle feeding for therapy, breast pumping, PT/OT/ST, eating and taking a shower once a week, I would have definitely been able to sleep.

2) I could take her with me anywhere. She never cried, moved or made a noise. People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM". Let them envy. I have plenty of my own for their baby's healthy screams.

3) She could fall asleep anytime, anywhere. I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated. I figured she got enough sleep, get her up and get her to work. The more therapy, the merrier.

4) She was very snuggly. She never tried to wriggle out of my arms.

5) She would let anyone hold her without crying. So I told everyone, "See, she really likes you!!" All she cared was that she had physical contact with someone. Although to be honest, she has always shown a clear preference for men. Hussy.

6) She has a high pain tolerance. So when I dropped her on her head, she only cried for about 5 seconds.
Kidding. She cried for 10. OH, still kidding... I didn't drop her on her head. Chill. I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction.

7) She'll eat anything now that she's on baby food. So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest. She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food. She has a good palate at an early age. She loves mommy's cooking. She is the only one in the family who doesn't complain when I make collard greens.

8) Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance. Regular milk is expensive. Thanks, Tricare.

9) I never had to get up in the middle of the night every 2 hours. It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy. I learned to sleep with one ear open until she stabilized at home. I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.

Wait, wasn't that supposed to be a good thing? Oh well. Fail for #9.

10) When she finally smiled at me almost a year after she was born, I knew it wasn't gas. She was smiling AT ME, and I EARNED THAT SMILE!

A valentine heard around the world...

2011-02-14T04:01:00.000-05:00

Happy Valentine's Day from Beaufort, South Carolina to somewhere in Afghanistan.

I'm seeing boats on the water and Spanish moss blowing in the wind; and you are seeing snow capped mountains.

I see our children dressed up in princess outfits, giggling and laughing; you see sweaty men in military uniforms.

I see our girls food smeared faces smiling up at me; you see the dirt stained faces of the Afghan children.

Someday soon, we'll see the same things at the same time. Until then, know you are loved and missed by your girls.

Valentine's Day Dinner

2011-02-14T03:04:00.000-05:00

Shrimp Cocktail
Salad with onion vinaigrette
Garlic Roasted Pork Butt
Rosemary Potatoes
Collard Greens with Onion and Bacon
Green Beans (for mom)
Macaroni and Cheese (for Amelia)
Fresh Pineapple
Tiramisu
Wine

Almost everything but the tiramisu, wine and pineapple were bought on sale.

Spell Check

2011-02-14T01:06:00.000-05:00

This post is for you, Barbara!

Surprise.
Exercise.
Definitely.

I never use spell check (which is obvious to my friend Barbara who often sends me emails with one word in them... correctly spelled). Most of the time it's a genuine typing error because I know how to spell very well; but there are three words that I always have to think twice about and most of the time I still get it wrong. I am clueless as to why I can't remember such simple words.

So Barb, I typed very slowly tonight. Just for you. ;)

Valentine's Day Box

2011-02-14T00:56:00.002-05:00

Last year Amelia had her first Valentine's Day at school, but I barely pulled it together in time. If not for a dear friend of mine (thank you Lori W), I would not have even had valentines for her to take to school. It was completely off my radar screen because of all the work Olivia was taking at the time.

This year, we received a notice early to have shoe boxes and valentines ready for tomorrow. So my uncrafty self came up with a fun craft that Amelia and I could do together. It's stolen and modified from a more complicated craft online, but I love how it turned out. It literally cost me nothing, as I already had the supplies.

The best part of it is the fun we have had making this together. We worked on it a little bit each day, and she was always so excited to do her part. She was able to do most of it herself, with just a small amount of input from me. She can hardly wait to go to school tomorrow and show off her work. Not only that, but she had a few design suggestions that were better than mine. Seriously, I am very lame in the decorating department. Bested by a 4 year old.

Yesterday while finishing up, she was also rocking a pink fairy costume with pink/orange argyle leggings and black boots; she'd asked me to pin her hair up into "princess hair" and then she got dressed. She definitely has some style.

Here is what we did: (I took pictures, but on a video camera that I don't know how to download from)
1) Covered a shoe box in scrapbook paper. I cut the pieces to fit, she put glue on the box and put the paper on.
2) She stamped the inside lid of the box with all kinds of her little stamps - flowers, birds, hearts, etc
3) She wrote her name on a piece of scrapbook paper and that was glued to the side of the box.
4) I took another, complementary vintage pinkish design scrapbook paper, drew 6 rectangles on them and let her cut along the lines using the scrapbooking scissors with the wavy lines that make pretty edges. I didnt' care if it was perfect, she cut pretty well but it still looked hand made. Nice.
5) Then I picked out purple, pink, red, blue crayons and gave her a pencil sharpener to shave crayons with into small bowls.
6) I tore off two sheets of waxed paper and laid one sheet on top of a paper sack on an ironing board. The paper sack is essential if you don't want to buy another fabric cover for your ironing board. I had also lowered the ironing board to its lowest height.
7) She sprinkled the different colors around the wax paper. One thing I would do differently if I did a project like this again is to have her leave a bit more room between the colors. They spread pretty well once they melted.
8) I put the second piece of wax paper on top and then let her iron, with my hand on top of hers on the iron. She pretty much directed the iron; I just wanted to make sure I had it just in case. The wax melted instantly.
9) While the crayons were cooling, she wrote her name on the back of all the cards.
10) Once cool, and while she was still writing, I took the fancy scrapbooking scissors and cut out hearts free form.
11) She worked over a paper bag; put glue on the hearts and put them in the middle of the scrapbook paper on the pretty design. Originally I wanted her to put the hearts on the white part of the paper, the back of it by her name. I thought the hearts would show up better. Shows how much design sense I have. She didn't like that idea, hence the change.
12) She saw some purple ribbons and wanted that, so she picked out two types of ribbon and I cut them and made little bows by just wrapping the skinny one around the middle of the bigger one and tying it in a knot. She glued those onto the cards.

All this took about 4-5 days, working a little bit each day on it to accomodate the attention span of a 4 year old. It was a peaceful, fun project to do together. I can hardly wait to see her excitement again in the morning as she takes them to school.

Unexpected Prayers

2011-02-14T00:38:00.000-05:00

At night, snuggled together in the covers, Amelia and I say prayers together. I would say the Lord's Prayer every night while she listened, and then one day out of the blue, she repeated the whole thing with me. There is something magical about listening to a child pray. We're nestled together, her cheek pressed to mine and I hear her sweet voice.

Every night, I pray outloud. I want Amelia to know that I come to God for help, for praise, for thanks. Every night she listens. Every once in a while, she wants to pray outloud. Mostly she likes to pray in her mind, she says. She's quiet for a minute, then tells me she's done. Occasionally she will tell me she wants to say the same prayer again outloud. She'll tell God thank you for friends, family, toys... ask him to watch out for Olivia and Daddy, often talk about relatives.

Lately, I've been asking God to help me become a better mommy, to learn all I can about the intricacies of my children, along with the other things I pray about. What I meant for it to be was an example of how we can go to God in all things and to be an example in asking for self discipline (which she surely needs right now).

What it turned out to be was far different. Last night, she prayed "in her mind" and then wanted to share with me the prayer outloud. It was tender and sweet, right up to the point where she prayed "for mommy to be a better person". I know she was repeating what she'd heard me pray, but I couldn't stop my reaction. I said, "I AM a good person!!" She immediately got the giggles and I knew I'd made a monumental mistake. The kind your kids don't forget. It had my attention, so she was going to repeat it over and over. She did, last night. In the car today on the way home from church. Again tonight. "Dear God... please help mommy be a better person". What kid prays for that? Seriously, it makes me feel like she's praying for a better mommy.

I just hope she doesn't start telling people she prays for her mommy to be a better person. I know she's messing with me. It's working.

Chicken Pox

2011-02-12T00:57:00.001-05:00

Olivia has chicken pox and a fever of 100.4 earlier today. The chicken pox is very mild and this version apparently an attenuated virus, which is good. I'm thrilled at several things...

She isn't too fussy, just tired. Doesn't feel uncomfortable - because she has a reduced sensitivity to pain, I don't think she really notices anything itchy.

She's very snuggly and keeps reaching for my pants leg to be picked up. :)))))))))

She had a fever. A normal fever. I wonder what this means for us... it's not typical that PWS children have fevers and the doc said a low fever was typical for this type of chicken pox. It's actually great news that she had a fever in my mind. I don't know enough about it to know otherwise, but it feels like it's a good thing.

I was supposed to make a meal for Family Promise tonight and be a dinner host... couldn't because we're not supposed to be around kids for 48 hours. I made the meal and dropped it off, went home to do some work and then went back to pick up my containers two hours later. I should be sleeping right now.

Exhausted

2011-02-12T00:53:00.001-05:00

It's been an extremely busy month. Every day I want to sit and write about what we've been doing but all I do is surf and let my brain veg when I finally get a chance to sit down.

Last Friday Mom and I drove the girls to Roanoke, Virginia to see my niece in a play at Hollins University. What was a 7 hour drive ended up taking us 2 days. My brand new van broke down right outside of Charlotte, NC. Thank goodness for the wonderful people at Hendrick Honda... although it was after hours (7 pm) and the service department was closed, they found a mechanic to drive out to where we were and check out the van. We definatelly needed a tow according to him.

Mom waited for the van to get towed almost 4 hours... the first tow truck driver threw the keys at her when she asked him why he was taking the plastic covering off the extra key. Crazy! The mechanic drove myself, Olivia and Amelia back to the dealer in a loaner van, where we dropped him off and found a place to stay for the night. I checked in, dropped our stuff off and tried to get the girls to go to sleep. They finally fell asleep a little after midnight, just in time to get 15 minutes of rest before I had to wake them up to go get mom. Poor Amelia... she was as floppy as Olivia when she was a baby. I could NOT get her to wake up and ended up carrying a 4 year old in one arm and a 17 month old in a baby carrier in the other arm down to the first floor and out the door. I dropped their blankies in the freezing rain and generally had a rough time.

We finally got the girls back into bed after picking up mom; and they worked on our car first the next day. When they realized they couldn't fix it quickly, they gave us another vehicle, this time a rental, and had us go on our merry way. We booked it to Hollins and made it just in time to see the last 30-45 minutes of Katie's play. She has no idea how hard we worked every angle to get there on time. It was great to see her.

Finally home late Sunday night. What was supposed to be a quick trip turned out to be one of the longest and hardest short trips I've ever taken.

Thank goodness Olivia has Prader Willi Syndrome. She was calm and quiet the whole time :) I guess there's something to be said for a baby who doesn't ever really get fussy. I hear she will make up for it later, but I am enjoying the flexibility for now.

The bad part of the trip is that it was so exhausting, somehow I misplaced my camera or it fell somewhere and I didn't notice it. I'm missing a disk that was stored in there with some priceless pics of Amelia as a baby. Don't ask me why I was dumb enough to put them in the storage part of the camera case. I'm hoping that I find it somehow.

Rising Kindergartener

2011-01-26T01:29:00.000-05:00

Amelia goes to a Montessori school where she's in a class with 3-6 year olds. At any given time in class, there are children quietly working away on math, art, history, geography, napping, reading, eating snack. They work on an individual rug that is about the size of your standard outside door mat. After they finish each work, they take it back to the shelf they picked it out from and go get another work to set on their mats. They stay away from each other's mats, or work together on a project. It's all very quiet and very productive.

There are "works" available for each stage of development, and the children choose what they work on. Amelia has been fascinated with being one of the kindergarteners since she saw them graduate on stage last year. In her class, she can actually do kinder work if she chooses it.

Tonight they had a meeting for parents of rising kindergarteners for questions, and I found out that while she could choose the work now, she hasn't been. She has stuck with the work that is the precurser for the more advanced work. When I asked her why she hasn't tried something new, she told me that it was for the kindergarteners, not her! I had no idea that she got that idea in her head.

So on the way home tonight, I told her the meeting was to tell us that she could now do all the kindergartener's work and you would have thought I handed her the best present ever. She was so excited and wanted to turn around and go back to school to do her work. At home, she was jumping around and telling Grandma all about being able to do that more advanced work now. I'm excited to see what happens with her. I can't believe she was holding herself back!

On another (food related) note... I made a griddled sandwich for dinner tonight using Rudi's Rosemary bread. Sliced a bunch of brisket I had made and frozen in chunks a while back, layered it on the sandwich with some horseradish cheddar and horseradish sauce and griddled the whole thing. It was so good! I had some Frogmore Stew for lunch. All of this is still eating out of my freezer and pantry. I have a long way to go to empty out all of it.

Before and After

2011-01-24T23:12:00.003-05:00

The house smells so good every time I walk into it today - garlic, onions, bacon - too bad none of it was for us! I often volunteer to cook meals for people who need them. I'm on a committee at our church and also for the base I live on to deliver fresh, hot meals. When our church does Family Promise, I volunteer for a shift and cook for them also. I'm often making a bit extra and handing it out to whomever is stopping by that day - Sunday when I made corn chowder, we invited a friend of Mia's over to play and they stayed for dinner. Sometimes its my friends, and sometimes it's the excellent therapists that end up walking away with a bite or two of some goodie.

Today I made a meal for a beautiful woman who has cared for Amelia and other children during church services. I really wanted to be able to give back to her during a time of need. I made sweet cornbread, collard greens, and more beans and sausage to drop off. I never thought I would like collard greens. I've had them a time or two and they just seemed so bland to me. But it turns out with enough bacon and onions, along with a touch of garlic, anything tastes scrumptious. I sweat those items first, then jammed the greens into the pot on top. Sprinkle kosher salt, cracked pepper, and sugar and put the lid on to let them cook away. I think most people add a bit of stock but the lid was heavy and they had their own liquid. They probably would have tasted good with a bit of heat and some acid - like maybe some cayenne or red pepper flakes, very subtle; or garnished afterwards with a shake or two of tabasco and/or vinegar.

I also cooked up some pears for Olivia and hummus for home group (bible studies in someone's home). I made another dip for home group tonight out of stuff hanging out in my fridge. 2 blocks of cream cheese, big handful of sun dried tomatoes, a jar of feta in oil (minus the oil), 2 garlic cloves, a tiny glad container (about 1/4 cup) of pureed basil from my garden a while ago, 4-5 black olives that were left over from a salad the other night. It turned out great. I think it would also make a great stuffing for chicken; or with some roasted red peppers and fresh spinach spread on a hot crepe and folded for a "crepe sandwich" would be YUM.

Every time I cook now, I think of Olivia. Every.Single.Time. It's an awareness I wish I didn't have; sort of like the first time you found out there wasn't Santa Claus. I think to myself... Does this have too many carbs? How many calories are in this dish? How can I keep the flavor and lose the calories?

Will this be the last time I cook this?

No, actually it feels more like the way the world changed September 11, 2001.

The world no longer felt as safe, happy and innocent as it had just seconds before, with the sick feeling that nothing would ever be the same again. It's how my world changed when we got the PWS diagnosis.

Movies on a Military Base

2011-01-24T14:23:00.000-05:00

Yesterday I took Amelia to see Yogi Bear at the Parris Island base theater. We usually get movies here about a month or two after they come out in town - they play here on Friday and Sunday and at MCAS Thursday and Saturday. Movies change each showing, so on Sunday it was 3 different movies starting at 2:00 pm.

It's very inexpensive to see a movie here, so I don't mind waiting a month...
$2.00 - movie ticket
$2.50 - small popcorn, small drink, regular size candy of your choice
$ .25 - refills on soda

We ran into a bunch of our neighbors there (the theater is about 2 blocks away from housing) and Amelia found a little friend to sit and giggle with throughout the movie. At the start of the movie, the National Anthem plays, and everyone stands up, faces the screen and is silent until it's over with. This is actually one of my favorite parts. Anyone who is active duty, in uniform or not, will stand at attention with their backs rigid, heads straight forward, arms at their sides with their hands in position. When it's over, everyone sits down and continues on.

When was the last time you heard the Pledge of Allegience or the National Anthem outside of a football game?

Photos soon!

2011-01-24T00:18:00.000-05:00

My camera charger found its way back home :) I left it in KC on our Thanksgiving.

I think I am going to try and eat as much stuff from my pantry and freezer as I can without buying anything else. I just bought milk and cream cheese this week - on sale for .99, and with 30 cents off coupons I couldn't pass it up. I really want to buy some to freeze but that would ruin my whole point in eating up the stuff I have.

Tonight I made corn chowder - chopped up about 4-5 stalks celery, two onions. Threw them in a heavy pot (used Le Creuset tonight) with some butter and thyme and let them sweat for a while till they were bright and crunchy and delicious smelling. Then I tossed in a big cooking spoonful of flour, stirred it around and cooked for a while to get the raw flour taste out. When that was done, I poured in a bunch of white wine from my handy dandy box o' wine with the pour spout, stirred around and cooked out the sharp wine taste. Finished it up with 7 small cans of corn, juice and all; a box of turkey stock (I didn't have that much chicken stock); and what was left of my pint of cream. I think it was about half a cup. Stir well, simmer for a while, season with salt and pepper to taste, puree half and pour back in. TaDa! Soup for the masses. I'm going to freeze the extra. All in all it ended up being about a gallon of soup.

Wholesome Baby Food

2011-01-22T16:55:00.000-05:00

Wholesome Baby Food is a great site I stumbled across today. Wish I had found it years ago. You'd think, being a former Chef, I would have tried harder. Still having teeny mommy guilt about that. But honestly, it's more like mommy annoyance because I want her to eat more of what we are eating.

Fun with Food

2011-01-22T16:52:00.000-05:00

Well, I might as well have fun with food while I still can.

Yesterday I made Tuscan Beans and Sausage (white beans, garlic, onion, celery, carrot, sausage, seasonings) and some sweet cornbread. I went all out and spread the cornbread with melted honey and butter mixed together. Delish! Olivia loved the beans and sausage, I didn't give her the cornbread. My mom mashed it all up for her.

This morning I was thinking perhaps she loved it TOO much. Diapers were a big change. :(

A few new communication breakthroughs...

2011-01-22T02:22:00.000-05:00

We've spent months trying to teach Olivia to do things that most babies learn pretty early. While the specific process is slightly different for each "thing" we try to teach her, it basically involves us (my mother currently, my father when he was taking his turn here, the four therapists, myself) physically moving her body to do the "thing" over and over again; all the while doing the "thing" ourselves.

If anyone has a better word for me right now than "thing" please comment. It's 2am and I'm tired and literally at a loss for some words.

Months = Since she's been born. Since before she could actually move any part of her body on her own.
We = we, the team of people- my fabulous therapists, doctors and family

Besides the obvious physical skills, we've also been working on social movements - waving hello, goodbye, giving kisses. Over and over again, kiss the dolly. Kiss, kiss, kiss. We say the word, make the motion, bring her dolly to her face. She's recently been bobbing her head toward the dolly for a kiss with her nose and sometimes with her mouth open. I keep telling her she's not allowed to kiss like that until she's married.

Back to the breakthroughs. Olivia has always had this connection with her daddy, even in the hospital when she wasn't too responsive to anyone else - but especially not me. She would respond a bit more, slight responses that you could barely detect at first, but more as time went on and she became stronger. Maybe it was just a blink, or a slight focusing of the eyes in his direction, or a twitch when he spoke. Rafe was the first person to make her smile (when the smile consisted of the tiniest of upturns of her mouth), the first to get her to laugh. She did those things very rarely, but when they did happen it was with him.

This past week, Rafe called from Afghanistan and had some time to talk/play with Livie on the phone - not so many people waiting in line to talk at that time. I put the phone on speaker and her whole face brightened up when she heard his voice. She got this huge smile on her face and was reaching for the phone. I assumed she just wanted to punch the buttons. He kept talking and I said, not expecting a response, "Livie, do you want to kiss daddy? Give daddy a kiss". Rafe was telling her he loved her, asking for a kiss and (most important) making kissing noises in the phone. She leaned forward, bobbed her nose on the phone and leaned back. I thought it was a fluke, but we kept on doing it. She did it 3 more times! Each time I told her to give daddy a kiss, and he made kissing noises, she would lean forward to the phone to "kiss" with her nose; she held out her hands and brought the phone to her face like she would with her doll and deliberately touched her face/nose to the phone. It all happened in slow motion because of her muscle issues, but it was amazing to see how purposeful she was.

And... the significance of her recognizing his voice 5 months after he left is not lost on me. Not just in a familial way, but in a cognitive, she's got brain function kind of way.

Not quite as exciting, but still cool, is that she waved goodbye to me today. It took a few minutes for her to process what she needed to do, but she finally did it in slow motion again.

She also recognized her speech therapist and her OT this week and got very excited when she saw them, stopping what she was doing and crawling toward them immediately (for the ST) and leaning toward the OT when she was in my arms. She actively seeks me when she is crawling around. She will crawl to the feet of someone and slowly "climb" her arms/hands up your pant leg to indicate she wants you to pick her up.

She's so stinkin' cute.

More on the baby food...

2011-01-19T15:09:00.000-05:00

Yesterday I made roasted carrots and parsnips, forgot the ginger, but Livie loves them today.

I also made a "loaded baked potato" - 2 heads cauliflower, 1 head broccoli and about 8 small baked potatoes mashed without the skins. Pureed the veggies and then mixed it all together with some (GASP) velveeta cheese. Hey, I'm all about using up what I have in the fridge. I should have used cheddar cheese but I didn't have any and didn't feel like running to the store. I didn't have time to put in ice cube trays last night, and this morning it was a bit stiff and very hard to spoon into the trays cold. I have a 21" pastry bag left over from my culinary days so I just put it all in the bag and piped it into the trays. It took less than a minute!

So today for lunch she had a cube of the potato mix, a cube of the carrots and parsnips, and some pureed blueberry applesauce. It seems sort of strange to me that my daughter who will eventually eat everything is getting a wider variety of foods to try than my first daughter, who is now quite picky about food. I knew better, I knew I should have exposed Mia to more stuff when she was a baby... oh well. The crazy thing is that Amelia likes soft shell crab, smoked salmon/capers/cream cheese bagels, and shrimp. The stuff she does like is expensive!

Baby Food

2011-01-17T00:47:00.003-05:00

I am kicking myself for not making Amelia's baby food when she was ready for it. I'm trying to remember now why I didn't; and I think it was a combination of things.

She was my first baby, and I was SO particular about everything. Rafe was still deployed; I was still working until she was 9 months old (she was in a daycare right down the hall from where I worked, so I still nursed her); I was tired basically being a single parent; I wanted her to have only organic foods, especially dairy. As a matter of fact, she's only a few months ago had her first regular milk that wasn't organic. I totally jinxed myself - she could taste the difference and stopped drinking milk. She didn't even see the carton, she just told me the milk tasted funny and she didn't like it. I finally had to switch back.

Since I was the only one who needed "real" food, I hardly ever cooked at home. I just ate mostly fresh fruits and veggies and the food I cooked at work. I bought Amelia's food, but the range of organic foods was limited in the area we lived in. She never liked the taste of meat unless it was some concoction that had brown rice, beef and peas in it. I don't blame her, I've tasted meat baby food and it's awful.

The bottom line is that I didn't give her quite the variety of foods I should have when she was a baby. I wanted to make her food, but for some reason I had it in my head that it was this arduous process with precise recipes. HA! I was so wrong.

So now I am making Livie's food and having so much fun doing it. It's so much easier than I ever thought. For the most part, I just cook really good meals and then puree parts of them. I've also recently bought some things just to make her different combinations of fruits and veggies. I've been using my handy dandy ice cube trays (love those things!) for freezing them. I freeze for a couple of hours, pop the cubes out and put in labeled freezer zip loc bags and fill them up again.

One thing I've realized is how much I have been getting ripped off buying baby food. To get that nice thin consistency that baby food stage 1 comes in, you add a lot of water to a small amount of puree.

So far we've done:
Plaza III Soup
Beef Stew with Mushrooms
Garlic Roasted Chicken (added a bit of stock to this)
BBQ Smoked Turkey (the real smoked whole turkey, also added a bit of stock to this with the bbq sauce)
Pumpkin Applesauce (used up a bunch of apples hanging around and our Halloween decoration pumpkin)
3 Apple Sauce
Sweet Potato with Cinnamon
Butternut Squash
Peas
Roasted Root Vegetables (turnips, parsnips, rutabagas, carrots, celery, onion, herbs)
Corn, Peas, Carrots
Beans

I bought some carrots and parsnips and tomorrow I'm going to roast and puree them; pears were on sale so I'm roasting those; maybe some chicken and leeks I've got hanging around in my veggie drawer and needs to be used; cauliflower; collard greens; black eye peas and rice; I might do something with spinach and potatoes...I think I might have some brown rice in the pantry. I might even throw in some wheat germ or flax seed into some of the mixes.

I've decided to cheat a little and look on baby food websites to get ideas of combinations also. I don't bother with a recipe, just the main ingredients (like Sprout, Jack's Harvest, Happy Baby, etc)
It's so much easier than I ever thought. Just cook, throw in food processor, blend. Add liquid as/if needed. Freeze. That's the whole recipe right there.

2011-01-13T00:45:00.000-05:00

Oh, you hate your job? Why didn’t you say so? There’s a support group for that. It’s called everybody, and they meet at the bar.”
~Drew Carey

How to know when your husband is going "outside the wire"...

2011-01-10T01:03:00.000-05:00

He calls and tells you how much he loves you and the girls and to give them hugs and tell them that, and what time will you be available the next day for a phone call and ends the call. The next time you check your email there is only a few sentences telling you again how much he loves you and the girls and make sure you tell them how he feels.

Oddly enough, he's really sweet when he's about to get in the line of fire. :O

Just kidding. I knew something was up because normally we talk about daily things and don't get too mushy on the phone. I asked him if he was going outside the wire and he just said he'd call me the next day. Today I found out he spent 9 hours with special ops forces on a foot patrol with all his gear on. He had a great time and wants to go out again. So much for the safe job inside the wire!

She finally realized she could move!

2011-01-08T20:23:00.001-05:00

Olivia is 16 months old and she crawled, real crawling, the Monday before Christmas. 1 1/2 weeks later, on Thursday, she pulled herself to stand by the piano so she could start cranking out some tunes. Kidding about the tunes part. She did bang away on the piano, though. We think she was actually trying to get to the book on the piano, because she loves books and hunts them down.

Friday, she pulled herself to stand again with the speech therapist and walked three very tiny steps from the therapist to the couch (with the therapist holding her hip for stabilization), where she cruised along trying to get to a book on the couch.

Today, Saturday, as we were sitting here she pulled herself to stand again and tried to get some books off the couch to "read". She then crawled over to me, tried to pull herself to stand again. But she's in footie jammies, and her feet started sliding sideways until she was doing the splits while holding on to the couch all the while with her head vibrating with excitement. Mom and I couldn't stop laughing. Is that so wrong??

A few minutes later, she had crawled over to the diaper bag, pulled everything out of it and then took off down the hallway dragging the diaper bag on her foot. Then back to the play area, where we heard a big THUNK and looked over to find she had dragged the small grocery cart onto it's side. She rolled over on her back, put it on top of her and kept lifting it up and down. I tried to get it all on video but my camera battery went dead as soon as I started. I can not believe the things she is doing now!

Funny little girl

2011-01-08T19:40:00.000-05:00

Amelia says the funniest things, and it's often not exactly what she says but HOW she says it that makes it so funny. Tonight I was combing her hair and telling her to hold still so I could get the rat's nest out. She asked me, in all seriousness, "Mama, why do the rats keep building nests in my hair?"

Extended Christmas Holidays

2010-12-30T00:44:00.000-05:00

Since Rafe is in Afghanistan, we went to Camp Lejeune to spend Christmas with some dear friends and their two boys. We wanted to be a part of a full, noisy household on Christmas, and it has been wonderful. As my mom commented, "For a house with four kids in it, it sure has been nice and quiet". The kids were noisy, but the well behaved, fun kind of noisy and not the screaming, fighting kind of noisy.

As luck would have it, we were only going to stay for a few short days and come back. I had some big plans for getting the house ready for the New Year, and some goals I wanted to prepare for both mentally and physically. That will have to wait for something far more important - my friend is having her 3rd child via Csection and she's pretty high risk. Her mom won't be with her until next Monday, so I am staying to help until then. Mom went back with the van and Olivia so she could continue with her therapies, and I am taking one of their vehicles back to PI with Amelia on Sunday.

If you are reading this and we had tentative playdates lined up, I am so sorry. I left my contact book at home. Amelia was looking forward to spending time with all her little friends from school and the base. She's still having fun here (even got to make a snowman).

Moving at the speed of light

2010-12-26T02:02:00.000-05:00

Somehow I missed posting this, although I wrote it last week, two days after Olivia started crawling.

Today Olivia discovered: trash cans, the blinds, paper sacks, filing cabinets with doors that open, computer wires and vaccuum cleaner cords. I never thought things would change so fast! I need to childproof in a hurry.

Who knew I would be so tickled to see my child getting into things? I should tell her NO and teach her not to, but I'm wrestling with being so excited at what she can do.

She also tried to stand up and look out the window... but I really think she was trying to play with the blinds again. She found some blinds that went all the way to the floor and got herself tangled up in them. Every time I turned around, she was missing.

I loved every second of it!

Observation

2010-12-22T22:08:00.002-05:00

My husband and children thrive on schedules, organization, predictable routines.

Unfortunately for them, I seem to be constantly overcome with bursts of random spontaneity.

WE'RE FULL ON CRAWLING!!!!!!!!!!!!!!

2010-12-21T22:04:00.004-05:00

I know I've mentioned somewhere that Olivia had started the beginning stages of a crawl probably around October sometime. She first looked like a mermaid - doing the crawl with her arms and hands but motionless from her waist down. It slowly evolved into a very flat commando crawl, and from there into a more active commando crawl. The steps have been excrutiatingly slow. But now... HOUSTON! WE HAVE A CRAWLER!

Every day we'd work with her on her "all fours"... putting her in position over and over again, with a hand under her core to support, and at the same time try to move her hands and legs in the right sequence. Our PT explained to us that we needed to create the neural pathways for the right movements long before she could do them herself, and the more we did that the easier it would be for her to crawl. And to be honest, I would have to say that it was really my mom who did the majority of this PT daily as I often took care of other things.

When we went to Florida to see Dr. Miller she prescribed carnitine for Olivia. It was something I'd asked about and it seemed it was time to add that supplement. She began taking it on a Sunday, and she crawled Monday 3 times ON ALL FOURS, about 2-3 feet each time at her morning PT session. One of those times she had a choice to crawl to a toy, to mom or to me. She hesitated and thought, looking back and forth, and then deliberately started off toward me very slowly. Then later in the afternoon, she crawled about 5 feet from her area over to Amelia's play area. About an hour later, Amelia and I were both in the kitchen at the same time and all of a sudden Amelia started shouting, "Look, Mama!! Livia is crawling! LOOK!" I look up and see Olivia has crawled from the living room to the kitchen to hang out with us.

Today she has been crawling everywhere. It's like she finally realized she could get out past the area where her therapy and toys/tools are.

Carnitine seems to have sharpened her in the way an out of focus camera suddenly sharpens; the change is hard to explain but definately there. She has more energy, more tone, like a light just switched on. I don't think the crawling is just the carnitine, but I do think it had a lot to do with pushing it to finally click.

Not only is the crawling a big deal, but I have to say this...

SHE CRAWLED TOWARD ME! memememememememememememeeeeeeeeee!!!! and then she wanted company and crawled toward us in the kitchen when she was surrounded by endless amount of new toys!!

To put this in perspective: For over a year, my child has shown very little particular preferences for anyone or anybody, with the exception of my husband and men in general. She seemed to be slightly more active and alert with men. She didn't cry for us, have seperation anxiety, show likes or dislikes with any great intensity. We could sort of gauge now and again how she might be feeling by her very slight reactions, ones that most people would most likely miss. She has never held her arms out toward me or in any way indicated that she knew I was her mother other than recognizing my voice and briefly watching me if I was talking and entering a room she was in. When she was sick over the Thanksgiving holiday, she called my name one night, slowly and one time. It sounded deliberate, but I still couldn't be sure. Not only does she have PWS, CAI and temperature dysregulation to deal with, she was 2.5 months premature with a very traumatic birth. I'd be lying if I said I haven't wondered about her cognition.

Today we had more great news - we received our 1 year evaluation from EDIS (Education and Development Intervention Services). She is now 16 months old. Olivia scored in the middle of the normal range for her adjusted age in cognitive skills, and below normal for all others, especially motor skills. Susan told us that it wasn't a predictor of the future or commentary on the past, just where she is currently. But currently, she's NORMAL cognitively!!!!!!! Again, a huge worry lifted off my mind with the apgar scores of 1, 1, and 4; 30 minutes of CPR and 3 chest tubes for collapsed lungs immediately after birth. We've never been able to ascertain how much oxygen she lacked for how long during that time.

My daughter knows who I am. And she prefers me to a toy :)

Hallelujah Singers

2010-12-19T23:06:00.002-05:00

We spent today at home - Amelia's cold is worse, but Olivia seems to be holding her own. So far no fevers, so I'm hoping it's just a simple cold. Olivia is faintly rasping a bit when she breathes; and if it gets worse tomorrow I'll take her in to the doctor to check for RSV. She had her RSV shot at the beginning of the month so I'm hoping she'll be ok.

This evening everyone seemed to be feeling better, so we headed out to a free concert by the Hallelujah Singers held in a small church in downtown Bluffton. I've been pretty proud of myself for finding so many wonderful free things to do during the holidays this year with the girls. The church itself was beautiful - enormous stained glass windows blazing with light. Coming upon it reminded me of a picture postcard of an old fashioned church in the snow, with the beautiful stained glass colors illuminating the night.

The church was packed, and it wasn't a large one. The singers were maybe 2-3 feet away from the pews. Mom and Olivia were able to sit toward the front; I sat a little further back with Amelia. From that vantage point, I could see Olivia literally vibrate with excitement when the music started. She seems to have a particular affinity for live music and does the same thing when she hears the praise and worship music at church. She was standing on Mom's lap, with Mom holding her up - I swear it looked like she was dancing! She was waving her arms around to the beat and bouncing up and down with a big grin on her face. She does the same thing when she is really excited. She would get a bit tired, collapse and snuggle for a bit; then pop back up again when the beat picked up. She really likes the Gullah beat the best; just like she really loved the marches the Parris Island Brass Band played.

Amelia had a bit rougher time. She is usually good at these sort of things, but this month we've been to 3 events where she lost some self control about halfway through. I think we're up just a bit too late and it's hard for her to hold it together. But all in all, I love taking them places. This in particular was something she probably won't ever get a chance to see again. They travel all over the world and the musical style and storytelling are unique to this area. The Gullah accent itself is very rhythmic - when the Gullah Geechee speak, it often sounds like they are singing when they are talking.

Here is some more about the Hallelujah Singers:

The Hallelujah Singers

A vocal group from Beaufort, founded 10 years ago by Marlena Smalls, the Hallelujah Singers seek to preserve through music the Gullah heritage, rooted in West African traditions and language, and brought by the slaves to the Sea Islands of South Carolina and Georgia. The Gullah language is Creole blend of West African and European dialects, developed in the isolated plantations of the coastal South. Most of the Gullah vocabulary is of English origin, but grammar and pronunciation come from a number of West African languages, such as Ewe, Madinka, Igbo, Twi and Yoruba. The slaves' knowledge of rice cultivation, a crop that had been grown in the West African region since 1500, made them desirable to the plantation owners of the South Carolina Low Country where rice had become a staple crop. The plantation owners, seeking the comforts of their city homes, often left the day-to-day operation of the plantations to the overseer or foreman, causing these isolated plantations to be much less influenced by Euro-American culture and allowing them to retain their "African-ness.

Smalls developed and refined a series of concerts to define the Gullah culture and the "Sea Island sound." Her goal was to preserve the melodies and storytelling technique of the South Carolina Sea Islands. Interwoven with music and narration, the singers present miniature dramatizations of some of the unique personages, rituals, and ceremonies that played an important part in shaping the Gullah culture. Among the Hallelujah Singer's repetoire are traditional plantation songs dating back to the 1600s. The group consists of five singers and two musicians, playing strings and conga drums. They have recorded three CDs. The first, "Gullah - Songs of Hope, Faith and Freedom," produced in 1997, features plantation melodies and spiritual songs. In 1998, "Joy - A Gullah Christmas" was released, and finally, in 1999, the latest CD "Gullah - Carry Me Home" was produced; it is the first to be nationally distributed. Performing at youth recreation, community, and senior citizens centers around the country, participating in various music festivals, and providing educational outreach for students in South Carolina and Georgia, the group has earned a number of awards, including the South Carolina Folk Heritage Advocacy Award, the Alpha Kappa Alpha Community Service Award, and the South Carolina Humanitarian Award. The Hallelujah Singers have performed in concert worldwide, and have appeared in television documentaries and the motion picture Forrest Gump. They have also performed for the United States Congress, Hillary Rodham Clinton, and South Carolina legislators. In the fall of 2000, the group will give a concert at the Kennedy Center in Washington, D.C.

Hoping for an uneventful week...

2010-12-18T22:35:00.000-05:00

One of Amelia's little friends came down with Strep Throat this past week, and two days later both my girls are showing signs of being sick. Mia's throat hurts and she's congested, and Olivia is congested. I'm hoping it's a simple cold and not Strep. Especially right before we are to travel to Jacksonville for Christmas! We spent this rainy, cold day inside watching movies from the library and lounging around.

Amelia's Imagination

2010-12-16T00:56:00.000-05:00

Reading the newspaper and breakfast in "bed" (the four chairs and a silk pillow)... she informs me that the long feather boa is actually a noose to trap wild animals that come too close. Note the poptart on the diaper box "bedside table" is her breakfast :) She has better mornings than I do. It's been decades since I last had breakfast in bed with the newspaper!

Going shopping for special things with her purple pumpkin "purse"

She asked me if she could play with her hair clips. After several minutes of uncharacteristic quiet, I had to peek, only to find her organizing them! I was so impressed.

Playing "dolls" with her dinosaurs.

This one obviously had a terrible accident (note the bandaids) but a good hair day.

Completely random post of Olivia with her PT. He is using his badge as a therapy tool.

She knows her Daddy...

2010-12-16T00:21:00.000-05:00

Olivia fell asleep with her Daddy Doll next to her face and I couldn't resist taking a picture of it. It's kind of incredible to me that she knows who he is, very definitely. During months and months of little to no responses from her, he was the only one who could get smiles or any kind of reaction from her. A positive sign to me of her cognitive function is that she still recognizes his voice and smiles when she hears him speak when he calls from Afghanistan. And finally, this piece of evidence that she loves her Daddy...

Battalion Christmas Party 2

2010-12-16T00:15:00.000-05:00

So much personality!

Playing with Grandma

Livie loves faces -better watch out for your nose.

Look at that curly hair!

I love my big sister!

We say Livie is SO nosy - she always wants to know what is going on!

You can't tell in this picture very well, but Olivia is grinning at herself

because she's reaching for Amelia's hair bow.

Amelia looks like such a young lady; growing way too fast for me.

My mom, my best friend!

Battalion Christmas Party 1

2010-12-15T23:57:00.000-05:00

Me, hamming it up after a night out

Mini Me, hamming it up after a night out with Momma

One of the loves of my life giving me "squeezy cheeks"

Visit with Dr. Miller

2010-12-14T23:35:00.004-05:00

Yesterday was a LONG day. We drove to Gainesville, Florida and back - leaving at 5 am and returning at 7 pm. We met someone last year who offered us a place to stay when we went down there next, but I couldn't remember who offered that, so down and back it was!

Dr. Miller is just a fabulous human being. When Rafe and I saw her last year, it was the first time I'd felt any hope for Olivia's condition. She was just so cheerful and upbeat about Livie's future that it eased a knot I didn't even know I had until that moment. This is our third visit, and it was exactly the same. She has this energetic aura about her that is simultaneously intense, enthusiastic, cheerful, and highly skilled. She bounded into the waiting room, recognized me and said, "Is this Olivia?!! I hardly recognized her, she has grown so much!!" Dr. Miller immediately swooped Olivia up into her arms and started cooing and talking to her. She spotted another beautiful PWS child in the waiting area and went over to say hello to them. In a flash she had both children on her lap, hugging and playing with them and introducing them to each other. There was a part of me that had a momentary panic wondering if the other child was sick (Livie's immune system is still compromised) but I trusted that it would be all right. I just have that much faith in Dr. Miller that I felt Olivia couldn't possibly get sick in her arms!! hahaha :)

She is now 21 lbs and 31 inches long, perfect for her stage. We were able to show off how much more she could do - including trying to stand when held upright. I mentioned my concerns about her defecating as much food as she was taking in; asked about her nutrient absorbtion; the difficulty eating lately (it's starting to take between 45-90 minutes to feed her each meal); her W sitting, biotene vs mi paste, and if we could test for carnitine, calcium, etc. I did forget to ask about a sleep study, but I feel that if it was warranted at this time she would have mentioned it.

The answers were both surprising and validating. Surprising because all the issues we've been having with her are innocuous taken seperately, but they apparently added up to some valid issues due to PWS. Validating because sometimes they seemed so minor that I almost felt I was making too big of a deal by commenting on them, but something didnt' seem right to me. Olivia was prescribed carnitine after Dr. Miller accurately told us the behavior of a child who is low on carnitine - sleepy during the meal, almost passing out sometimes, then immediately perking up after they are done eating. DING! Solution one.

Olivia is going to have a lot of bloodwork/tests done in the next few weeks. A fasting lipid test to find out if her body IS absorbing what it needs to. Apparently there is a period of time in some PWS children where they don't absorb much and we have the symptoms of constantly dirty diapers.  Dr. Miller mentioned the medical term for it but I can't recall it. It also could be a virus that migrated from the cold she had into her intestinal tract - the time frame is right. She said it sometimes migrates after the cold has run its course and that would be about this past week.

That test is going to be a struggle - it's hard to do a blood draw on PW children, because their low muscle tone prevents the ability to hold the blood vessels in place as well and they "roll" when trying to draw blood. The solution is to hydrate the kids as much as possible before the draw. Olivia is not a big fan of water, and that is the only thing we can give her for 12 hours before the lipid blood test.

We're also doing free T4, IGF1, IGFPB-3, Carnitine Profile, BMP with Ca, Mg, Phos, 25 OH Vitamin D3, Liver Function tests. All of those will be done at MUSC in Charleston since our local hospital doesn't have the ability to do all of them. I'd rather one stick for all of those than 2 if possible.

She recommended theratogs to support her sitting to keep her from the habit of making a W with her legs; and threw in the bonus recommendation of using Sure Steps for her feet. Dr. Miller noticed that Olivia was already standing with assistance and that her feet were pronating. She mentioned that many PT's will wait till she would actually be walking, but she feels that since she is standing on her feet, the earlier she learns the right habits the better it will be for her feet. We were supposed to get a prescription for that also, but in all the hubbub of issues, it was forgotten by both of us. I will just have to email her and ask for it or ask my own pediatrician for it.

I've posted about my Biotene issues on here, but Dr. Miller said we could use the drops only, not the paste or gel, just a couple times a day, especially before speech therapy. Mi Paste is less for salivary issues and more for teeth protection, so it wouldn't work for our needs.

One of the most interesting pieces of news was that right now Olivia is still getting hungry AND satiated. I told her that I felt that Olivia showed definite signs of not wanting to eat more after eating a decent amount and I was worried that we would teach her body to override what little signal it did have and ignore her feelings of hunger/fullness.   Dr. Miller agreed. She feels we should no longer try to feed her by the numbers as much as we have been, but instead follow her hunger cues. It was very exciting for me! This doesn't mean she won't suffer from the hyperphagia, but just that she doesn't suffer from it right now. There is still time for a miracle cure! Yes, I know it's a long shot, but I'm finally hoping for one.

We'll be back in 6 months. At the 2 year mark, Dr. Miller will also have a speech therapist there to check for apraxia. If it is there, then the ST will work with us/our ST to correct that.
All in all, it was a great visit. A lot of questions answered and some positive affirmations on how well Olivia is doing.   It is hard not to compare your child with others who have the same syndrome and wonder how far behind she is. Considering her extremely rough start, she is much farther along than anyone anticipated. I am so grateful for our Tricare insurance, my family, friends and support systems. Without all that, she would not have achieved as much as she has.

Update on Olivia

2010-12-13T00:16:00.000-05:00

She seems to be doing a bit better. She passed a 2 oak leaf particles and a bit of paper that Amelia watercolored. I caught her with it in her mouth Friday and thought I fished it all out, but apparently not. I hope that is all that it was.

She still isn't too interested in eating and gets distracted easily. It's now taking about an hour and a half to feed her.

We're headed to Dr. Miller's in Florida tomorrow for our 6 month checkup. 4 hour drive. We're dropping Amelia off at a friend's tomorrow morning at 5 am. After the appointment, we will turn around and drive straight back. I am NOT looking forward to it. And my poor mom is coming with me. She is such a trooper.

I think something is wrong with Olivia...

2010-12-11T22:41:00.000-05:00

but I'm not sure what. She hasn't been eating very well. It normally takes a while for her to eat normally, but it is taking even longer than normal. She doesn't seem to want to eat at all; she's more tired than normal. She's had a few more dirty diapers than normal also. Today her BMs went from green to the mustardy yellow of a newborn. It's probably a GI bug, but with Central Adrenal Insufficiency I just don't know how serious it could get. With Amelia, I would just have waited it out. She's snoring right now, and she hasn't done that in quite a while.

She looks fine, she acts happy. It's so hard to figure out the subtle signs.

From Afghanistan

2010-12-11T21:10:00.001-05:00

"This is something I just wrote up about a couple of men who died for a people who may never understand what a life of freedom can be like. I was part of a group of 300-plus Servicemembers who saw these honorable men off as they were loaded onto the freedom bird destined for the land of the free:

Thou Shall Not Move

Standing there in the bone-chilling cold wind of reality, I dare not move.

My hands go numb and my legs grow tired, but I dare not move.

My mind drifts into thoughts of what brought me here, and I don’t want to move.

Time, thoughts, feeling slip away never to be recovered, and I forget where I am.

Lost inside myself, I hear the sound of music somewhere outside of me.

My focus snaps back into vivid clarity, and I am back in my cold, tired body, but I dare not move.

I hear someone yell a command, and my razor sharp, numb hand automatically and slowly lifts into a reverent salute. It locks into place, and I do not move.

I see the two flag-draped containers pass slowly by and I think about those asleep within: they shall never move again"

R.S.

Cooking this week

2010-12-09T21:50:00.007-05:00

A few weeks ago, Rafe called me to ask how much I spent on groceries a month. He said he was having a discussion with the guys at the base and when he told him we only spent 500$ a month on groceries (this includes cleaning supplies, diapers, non food items etc) they told him he was crazy and that we were probably spending at least 700-1000$ a month for a family of four. I about fell out of my chair at that amount. I know grocery prices have gone up enormously but to consider $1000 a month normal is shocking to me.

Anyway, I sent him our recent grocery bill along with the explanation of some things I did to keep costs down. I think that week I made Chinese BBQ ribs with flash sauteed sugar snaps and jasmine rice early in the week and on the weekend used the remaining meat and rice for a stir fry rice. I am by NO MEANS very good at this; there are some coupon queens out there. I don't use coupons very much because I mostly find they are for processed/junk food or things I wouldn't normally buy. The things that cost the most are usually the non-food items like diapers and pullups. When things are on sale I buy in bulk and I rarely pay full price for any meat item. Mom picked up 2for1 on the shrimp.

What we ate this week:
Steamed Shrimp
Baked Garlic Pepper Chicken Breast
Chicken Curry Salad
Plaza III Soup
Stuffed Shells with Broccoli and Chicken
Salmon Cakes with Dill Sauce

I cooked double portion of chicken breast (cook once, eat 2-3 times in various meals). The night I made the chicken breast, I made chicken/beef stock with all the scraps I've been saving in the fridge. I save leftover pan juices from roasting chickens and throw that in the freezer until I make stock. I also save bones and trim from beef/chicken for stock.

I also made the base mix (chicken, curry, onions, currants and golden raisins) that night for the curry salad. The next night I defatted the stock and made Plaza III Soup out of the stock and all the bits and pieces of frozen vegetables left from various meals. We made our own cocktail sauce and the dill sauce will be made with plain yogurt instead of sour cream.

Items used bought on sale for the meals: shrimp, chicken, ground meat, shells, spaghetti sauce, canned salmon, golden raisins, celery, onions. I used herbs from my and my neighbor's gardens.

There were enough items left from most of the meals to have a second or even third meal. I've been pureeing foods we eat and freezing them for Olivia in ice cube trays, along with using some purchased foods. We had some leftover fruit I pureed; also made pear/apple sauce, butternut squash, beef stew, teriyaki green beans. I'll end up pureeing some of the shell pasta dinner and soup for her also. We have some pumpkins left from Fall decorations that I am going to cook with apples and puree; and I am going to take some of them and make pumpkin ravioli stuffing out of the rest (freeze the stuffing mix for Olivia but not make ravioli).

We typically have fresh fruit with every meal (this week it's been apples, grapes, oranges, pomegranates), vegetable if not in the main course, and sometimes salad and bread if no starch already in meal somewhere. I made enough curry salad base to share with a neighbor.

Tomorrow I am making a roast pork shoulder with winter root vegetables and rosemary potatoes for Family Promise. The meat for that only cost 97 cents a pound. A friend of mine is bringing the salad and dessert. I'm taking Amelia with us because I think it's good for her to get involved in this kind of thing early on. The families we're feeding have 5 kids all together, two of them are 4 year olds.

Olivia's New Teeth

2010-12-08T23:29:00.003-05:00

In November we had a developmental checkup for Olivia at the High Risk Clinic at MUSC in Charleston. Dr. Papu was one of the doctors overseeing her care when she was in the NICU, so it was nice to show Dr. Papu how far Livia has come since last year.

At that time we also had an evaluation by a pediatric dentist. Livie has 8 teeth, and 3 out of the four top ones were not completely formed. I learned that teeth are one of the last things formed in the womb and they grow in rings, like trees. When a traumatic event occurs, like a premature birth, the body puts effort into healing rather than growing. Along with the antibiotics given to her during her NICU stay, her teeth did not form properly. They looked like slivers of teeth and she was diagnosed with dental hypoplasia. You could see some of the interior of the tooth and the dentist was worried about dental caries. I was very impressed with the knowledge of the dentist at the time, and she took detailed pictures of Olivia's mouth before setting us up with a follow up appointment for today.

Traveling with Livie to a doctor's appointment is always tricky. Her primary source of nutrition is still Neosure from a bottle. She can't drink from a cup and she won't drink anything that isn't exactly the right temperature. If it is a neutral weight and temperature, it almost seems as if she can't feel it in her mouth or recognize that she needs to be eating. It takes about 45 minutes to an hour to feed her most times. Doctor's appointments away from Beaufort, even just one of them, usually takes all day to complete. It's a two hour drive, so we have to leave early enough to feed her there before the appointments so we can do the requisite waiting around in busy offices, and then feed her afterwards before the drive home. And the doctors there are excellent - they take their time with you and your child so you are often there for some time.

Olivia will always have some mouth/teeth issues. One of the presentations of PWS for her is reduced saliva. Her teeth and mouth need to be brushed often, her breath is often stinky, her saliva is thick. Her dentist mentioned that we would need to work harder on preventing cavities with her and that regardless of her future diet, she should eat (when possible) her carbohydrates first, followed by proteins and fat. Apparently this helps neutralize the sugar from the carbs and reduces the likelihood of cavities by creating a more acidic environment. So interesting! I asked her about some toothpaste I had recently picked up in KC (Tom's of Maine) because I wanted less sugar in the girls' toothpaste. She agreed that it was a good one for Olivia, and will give me some feedback on other items I purchased after I send her the labels from them. I picked up a natural mouth spray with xylitol in it - she was thumbs up on the xylitol but wanted to know more about the spray.

The dentist had recently gone to a conference on Pediatric Dentistry after meeting Olivia in November. It was encouraging to me to hear that she specifically sought out more information on the issues facing Livie. When she mentioned that she looked for PWS dental pictures on the internet but couldn't find them, I told her that she was welcome to use the pictures she kept taking of Livie's mouth in any way that would help other dentists. Next visit, I will sign consent forms for her to use Olivia's data for research or other purposes. During the conference, she asked about Biotene for babies and children (to help with salivary issues). Dr. Miller recommended it for use with Olivia, but there are no protocols for children under 12. When I called the company, they refused to even discuss possibilities with me due to FDA regulations (understandable, of course). Our dentist sought out many experts at the conference asking about this and was told there was nothing out there but it was an interesting concept. So I told her if she could figure out something that worked for Olivia, she could get rich and famous!

The conversations with the dentist were extremely informative and interesting; she really knows her stuff. They ended up giving Olivia two different treatments that resulted in her having normal looking teeth, and covering up the weak areas so the teeth don't further deteriorate. We'll go back in 3 more months for a follow up.

Snapshots from today

2010-12-07T22:43:00.007-05:00

I love how imaginative Amelia is. She's always creating new scenarios with the things we have in the house. Tonight it was the little chairs to her table - this is a parking garage with an opening for the cars to get out. She informed me this is a cage for her stuffed animals and the cars can check on them.
This is her cousin Greta's bottom. Just kidding, Lisa!
The pants are too short but they are still falling off her; she's so slender.
This is a road where the cars are racing and crashing
before driving off the road onto the trampoline. She also made an airplane out of the chairs, with the chairs lined up in single file. She was the captain and mom and I were the passengers. She said she had to get her booster seat to sit in so she could see out the windshield of this imaginary plane. The incongruity of that struck me as hilarious.

Grandma showing Amelia how to sew buttons on felt. Olivia reaching up to pull the tablecloth off (not too exciting unless you look at the position of her body and realize she is holding herself up like that!)

Livie reading one of her favorite books - aren't her little feet and legs so cute?!

Still reading

Two perfect grape tomatoes pulled from a dead tomato plant. I've tried all summer to get tomatoes off those darn plants with NO success whatsoever. I haven't watered them in months now and went out this morning with Amelia to pull the plants before school. She noticed the tomatoes right away - and there are a few more on the plant almost ready. Needless to say, we ate them and they were DELICIOUS! Too bad out of 4 plants this was my only result.

Amelia with her hairband from St. Nick

Routine phone call

2010-12-07T22:24:00.004-05:00

When your husband is deployed, sometimes you have phone calls that go something like this:

Me: after telling him all about the girls and the recent events,
"So, how have things been going with you?"
Him: "I've been doing a lot of running. Thanks for sending the shoes. I bench pressed 120 today. Not much else has been happening. Oh, yeah - we got mortared today"
Me: "Really? Was anyone hurt?"
Him: "No, I don't think so."
Me: "Anything else new?"
Him: "Not that I can tell you"

Then I hand the phone to Amelia to let her talk to Daddy and tell him about her adventures. She tells him she wants a dragon costume for Christmas, that she's being a good big sister to Olivia, and all about her day and how much she loves him. We talk a few minutes more, say good bye and wait for the next time he calls from Afghanistan.

His deployments and the things that go along with them have become so much a part of our routine that it isn't until later I realize how strange it has become that having your vehicle blown up by an IED or getting shelled is part of normal conversation. I don't get scared or worried about him because there is no point. If something happens, by the time I hear about it, it will already be in the process of being resolved and worrying won't make our daily family life any more secure.

I wonder how much more strange it is for him to be there, living in one world and then having to talk about what things are like for us here. When he was in Iraq, he told me one time that it felt like he was on another planet and we seemed to be a dream to him from another life.

Olivia

2010-12-07T00:35:00.004-05:00

Reading her favorite book - she can turn the pages sometimes. Officially a normal little sister - she's healthy enough and not as fragile anymore so Amelia can mess with her
So cute!

A simple day at home...

2010-12-07T00:12:00.005-05:00

I'm trying to post a bit more because Rafe has slightly easier access to the blog now than he did. Someday I hope he might be able to write a few words on here also!

Today was the first day back to school for Amelia. One of her first questions to me every day is, "What do we do today, momma?" No matter what is going on that day, I always tell her in my "it's going to be so much fun!" voice. This morning it was, "When you come home from school, we're going to do some cutting work and then eat dinner and go to bed!!!" She was so excited - "yayy, mommy!". I love her great attitude.

We worked on an advent project that was my mom's idea. I had wanted to get all fancy and have daily things planned out on a little calendar that we would open each day and do. Maybe someday, but this is all I can handle for now. And it is turning out even better than I imagined! I'm not sure what the end result will look like, but for now we are working on an advent calendar we are making ourselves a bit each day. While we do this, we talk a little bit about the birth of Jesus and the meaning of Christmas. Nothing too heavy. It's been a fun, low key way to get in the Christmas spirit. We talked about St Nicholas and his good deeds and persecution last night in the bath and tonight we laid out stockings on the church bench in the hallway. Tomorrow will be the first day she ever really gets the excitement of having a full stocking.

Olivia was a little pistol today. She pulled herself up in her crib for the first time ever, and wants to stand when you try to get her to sit on the floor. She keeps trying to pull herself to stand when you hold her hands. She loves to yap after hours of not making a sound - loud!

Amelia cutting out the tree Mommy drew

So serious!

All done! She did a great job cutting it herself.

Now she's marking numbers on the tree where buttons will go.

Livie right after pulling herself up in the crib.

Looks like it's time to lower the bed!

My beautiful girls!

2010-12-06T00:29:00.004-05:00

It was hard to get a good picture that captured the warm colors and was still sharp. Olivia loves the Christmas tree. We joke around that Livie is VERY nosy. She has to always see what is going on around her. It's so cute! The contrast between this year and last year is enormous.

Still enthralled.

Isn't this face so cute!??!

Amelia wanted her picture taken in this chair as we were leaving.

Christmas Parade

2010-12-05T23:38:00.003-05:00

Amelia's school had a float in the parade, so she was able to ride on her first float ever! The kids behaved great considering they had to sit on the float for about 45 minutes before it even started. About the time the Parade took off, several kids needed to go to the bathroom after waiting all that time! I felt for them.

Love the creative reindeer antlers made from Palm trees!My Christmas Elf

All the way to Kansas City, Mia kept telling me how much her best friend Logan missed her.
I think the feeling was mutual!

He is absolutely the sweetest, most wonderful boy! Their friendship is so innocent; they love doing stuff together. On Wednesdays, his mom picks them up from school and they head to the library for a while before going to Karate class. It's better than the days they spent pouring sand on each other's heads. You'd think they hadn't seen each other in years instead of just two weeks.

A view of some of the gorgeous houses we went past in downtown Beaufort.

And a not too shabby fur coat, either!

We had just enough time after the parade to have dinner and bath. I was watching a friend's child so we are going to start our St Nick's traditions tomorrow night. The joy of being four... sometimes if I'm running behind the day something starts is a bit flexible!! She will never know :)

Boat Parade

2010-12-04T23:59:00.004-05:00

I started off this month with the intent to have a quiet month concentrated at home with family. During the month of October and November, Amelia had playdates almost every single day after school with one friend or another, and I just wanted to keep her home (and stay home myself!) and work on more things with her. I'm already not keeping to my goals very well! But we're having a great time.

I thought today would be my leisurely day, but ended up taking Livie for a synagis shot (love my doctor and synagis nurse - she wanted me to come in on a less crowded day and he checked Olivia over after our trip). She's a bit dehydrated and struggling to eat after the trip but bouncing back. We are feeding her every two hours and taking turns with pedialite and milk.

The rest of the day was a lot more fun - I went to help decorate Quarters One - the General's house here on base. The Parris Island Officer Spouse Club is in charge of decorating it each year. I don't think that is the tradition on most bases (but I'm not 100% sure), but here the General's home is quite historic and receives a lot of visitors. I know I worked for 3 hours with about 20 women all together and it was still underway when I left. Piles of magnolia leaves, pines, mistletoe, berries and pinecones had been gathered and deposited on the beautiful porch along with boxes and boxes of Christmas decorations from years past. The home itself features furniture that belongs to the house and the current occupants can add pieces of their own. The house also has a chef/butler/assistant Marine who is assigned to the house - and if I remember correctly, there are only 6 of him with his MOS in the Marine Corps. He's also a great shot and knows a TON about guns - he and Rafe talked for hours one time in the exchange about guns. The General and his family are very safe there! :) I wish I had my camera to take pictures of what I did. I can't decorate my way out of a paper bag so I was quite proud of my hours of hard work (although they would have taken another woman probably half that time at least!)

In the evening, I drove us all down to the waterfront to watch the Christmas boat parade. It was my first experience and Olivia was loving the lights. We walked around to see the shops afterwards and had candy cane ice cream. Not quite as fancy as the Plaza, but a WHOLE lot warmer!

Back Home!

2010-12-04T09:18:00.005-05:00

We've spent the last 2 weeks traveling to Kansas City and back. It was a trip I dreaded but it turned out wonderfully. I love being around family, but we usually are stationed so far away from them that the drives are usually a day long of straight driving, which is hard on everyone. Since my mom is staying with me while Rafe is deployed to help with therapies and other family concerns, we drove up together and decided to make it a fun trip by stopping along the way. SO much more pleasant than driving straight through. I'll be posting pics in a few days but this weekend is jam packed with activity so I'll probably work backwards.

We came home very late Friday night and unpacked the van before going to bed. Mom took care of Olivia's meds while I was hauling stuff upstairs from the garage. It was a bit sad to turn the corner to our house and see the garage light on in my neighbor's house illuminating the completely empty garage. It was shocking to see their patio completely gone and just a bare layer of dirt below. They received orders to move to Virginia right before we left and the transition was quick!

My daughters and I loved Miss Lori and Mr. Jim. They have been supportive of us from the first day here - praying with us, for us, and in various ways at our side through the past 3 years. Lori is a hospice nurse who volunteered to come for 3 hours every Tuesday to take care of Olivia and give me a break during a time when I couldn't use a normal respite care provider due to the complications of Olivia's medical care and needs.

Amelia used to look out our window and give me constant updates on who was home - Mr. Jim or Miss Lori - by the cars in the drive. When she saw Mr. Jim outside she always asked if she could go "hep" him do something. He was very patient with her and spent hours answering endless questions as she followed him around like a little puppy when he was outside puttering around. Seeing Miss Lori was always cause for excitement and asking to go play with her. Along with two other women, we were the "Three Lori's and a Judy" - feeling a bit like the 4 musketeers as we had our adventures around Beaufort! They have been such a part of our daily lives, especially Lori, that it will be difficult looking out the window and seeing the gash in the dirt as evidence they are truly gone.

Yesterday was also exciting as we attended the retirement ceremony of the other Lori's husband (from the Three Lori's and a Judy). It was very moving to celebrate 22 years of service and dedication and I definitely cried during the process. Afterwards we went to their house for a party and I don't know who had more fun - us or Amelia. She was the only child, other than Olivia, at both the ceremony and party and she was on her best behavior making friends wherever she went. I can tell she misses Daddy because she really gravitated towards the male energy in the room and the daddies were so kind to play with her endlessly. To hear her giggle and laugh made my day. On the way home, she said she had a lot of fun playing with "those big tall boys!!". Olivia was passed around and loved on all night, and it was so much fun to receive compliments on how well behaved they were.

We drove around base housing looking at all the fun Christmas lights after the party and crashed at home. Today is a new day!

Watching my future run and jump

2010-11-18T22:27:00.002-05:00

Earlier this week, I had the pleasure of meeting with another mom who has a child with Prader Willi Syndrome. This woman has been a lifeline to me in more ways than one since Olivia was born. When Livie was diagnosed and I had our first visit with the geneticist, at the end of the visit he asked me if I had any more questions. I only had one - did he know of anyone else in South Carolina who had been diagnosed with PWS? And could I talk to that family?

Lucky for me, he did. AJ was diagnosed at 8 months and is now 3. Her mom called me not too long after that conversation with Dr. Pai. I had so many questions for her. I was still in a daze, and many times over the past year I have asked her the same questions over and over again. She has never ceased reaching out to me, even when I absented myself from the world for a little while. I am so very grateful for that. She gave me some hope when I didn't have any, and she gave me some valuable resources that we would have never known about otherwise for quite a long time. Without her, we would probably not have found Dr. Miller for quite a while, and as a result Olivia has better care than she would have otherwise.

She saved me hours of research by passing along shortcut information... and she did it cheerfully and without ever making me feel obligated or intruded upon. It's a fine line to walk when someone needs help and she did it with grace, compassion, and an open heart.

As blessed as I am by all that, I am even more blessed to meet her precious daughter. Ayden Jane is so stinkin' cute, spunky, and funny. We told her she was a hoot, and she grinned up at us - "NOT hoot!" She totally got it. She knows she's funny. More than anything else, that gave me hope. For a child to be funny, they have to have an understanding of nuance and subtlety. It's a great sign of intelligence.

AJ is on the higher end of the PWS spectrum, and she's very much like any other 3 year old in many ways. She has a very strong sense of self, likes and dislikes, and was very polite. She did have some delays, but they seemed minimal and mostly speech related. Not at all what I envisioned for our life a year ago. The very best part of my day was Ayden Jane taking my hand twice - once as she walked down the stairs, and once while walking along outside. This really touched my heart. When Amelia was born, we snuggled constantly and she was rarely out of my arms. When Olivia was born, that was impossible. Even after we brought her home, to feed her required this odd position on my knees where she wasn't even held close to my body. One of my deepest sorrows was missing all that physical contact when she was a baby and wondering if we would snuggle and wrestle and play around with each other as she grew up. For some reason, the simple act of AJ taking my hand told me it was going to be all right.

While she played - running and jumping - so did my heart.

Safest place in America to trick-or-treat

2010-11-18T21:22:00.013-05:00

We live in the ultimate gated community! There is only one way onto Parris Island, and the gate guard has a rifle. You need ID, insurance and car registration to get past him. The long causeway has water on either side of it, and in case you drove past the first guard without stopping, there is another one at the other side of the causeway to catch you.

We're surrounded by water - no one can get on without going through the front gate.

Military Police patrolling the streets in a car and on foot throughout the evening.

"Hi, Daddy!!"

Some of the neighbor gang... fun to trick or treat with your friends!
One of the military chaplains and his decorations.

Amelia with her favorite "Princess Hair". Her hair is so naturally curly that if I pin it up while it is freshly shampooed, it looks absolutely beautiful.

Home at last!! The best part... eating the candy! And this is how Olivia spent her second Halloween... very different from last year. She was snoozing in the hospital instead of at home in a nice cozy bed. Look, Rafe! She's lying on her side! No more nap nanny!

Developmental Objectives

2010-11-13T23:52:00.005-05:00

I've found some great blogs over the past few months that are helping me wrap my mind around some of the things I will need to be teaching Olivia. I'd rather be proactive and learn about it now so I can have tools available when the time comes. I'll probably still be behind the power curve because it takes me a while to get organised, but this is one with great thoughts and ideas that I really enjoy. It confirms many things I'm already doing with Amelia and shares some new information I could use in the future.

NOT JUST CUTE

Low Country Oyster Roast!

2010-11-13T23:30:00.005-05:00

One of the advantages of living on or near a military base are the fun programs they offer for families. Tonight we went to an Oyster Roast at Laurel Bay and it was fabulous! The community center is right by the water, and as we arrived there we were lucky enough to see the brilliant orange and pink sunset through the mossy oak trees reflecting off the water. It was absolutely beautiful.

Amelia, of course, was not too interested in fresh hot oysters. She had a few bites of hotdog and some crackers and then played with the other kids. But Mom and I dug in! We brought our own oyster knives and towels (a custom down here that I learned the hard way - by forgetting them at the first oyster roast I went to). They roast the oysters in big mesh metal boxes, then dump them out in big piles onto the middle of the tables. There are buckets by the sides of the tables for the oyster shells, and you start opening them up and popping them into your mouth as quickly as you can, tossing the shells into the buckets to be saved and returned to the marsh. We had sleeves of saltine crackers, squeeze bottles of tabasco and cocktail sauce and lemons on the tables. The oysters down here come clustered together in big chunks, so you could grab one cluster and end up with 6-7 oysters sometimes. You just keep turning the cluster around and opening up more shells.

Off to the side, someone was manning Frogmore Stew - basically crab boil or seafood seasoning (like Old Bay) with cob corn, shell on shrimp, potato chunks and sausage. The original Frogmore Plantation is not too far from here on St Helena Island. We missed the local Gullah festival this weekend as Olivia really needed to stay home and rest, as did all of us after the last few weeks.

I wish I had pictures, but I was way too busy eating! By the time we were done, we had a 2 gallon bucket full of oyster shells.