Thursday, December 30, 2010

Extended Christmas Holidays

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). 

Sunday, December 26, 2010

Moving at the speed of light

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!

Wednesday, December 22, 2010


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

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

Tuesday, December 21, 2010

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

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 :)

Sunday, December 19, 2010

Hallelujah Singers

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.

Saturday, December 18, 2010

Hoping for an uneventful week...

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. 

Thursday, December 16, 2010

Amelia's Imagination

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...

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

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!

Wednesday, December 15, 2010

Battalion Christmas Party 1

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"

Tuesday, December 14, 2010

Visit with Dr. Miller

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.

Monday, December 13, 2010

Update on Olivia

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.

Saturday, December 11, 2010

I think something is wrong with Olivia...

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

"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"

Thursday, December 9, 2010

Cooking this week

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.

Wednesday, December 8, 2010

Olivia's New Teeth

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.

Tuesday, December 7, 2010

Snapshots from today

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

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.


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...

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!

Monday, December 6, 2010

My beautiful girls!

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.

Sunday, December 5, 2010

Christmas Parade

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 :)

Saturday, December 4, 2010

Boat Parade

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!

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!

Thursday, November 18, 2010

Watching my future run and jump

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

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!