Friday, April 30, 2010

So what is new with Ayden Jane and physical therapy. I am waiting on the results of testing, but in the mean time, I talked with Jen about Ayden Jane seeming to have a big belly at times. She worked on few things and basically it comes down to her belly muscles not staying 'turned on' as Jen puts it. Ayden Jane has gotten very strong at many things and loves to climb, swing on her belly... but when Jen worked with her, she had a very hard time lying on her back curling up into a ball. She could only hold her head up (tuck her chin) for a few seconds and you could see it was very hard work. She gave us some fun ways to work those muscles. I have worked with her a few times a day for the past 2 days and I can already see a difference! It amazes me how all the connections and abilities seem to be there with Ayden Jane, she just doesn't 'automatically' do them as a typical kid would. With a little cueing and practice for muscle memory her little body catches on quickly. For the record, we had been down this road with our tummy muscles before and all was looking good. We just hadn't visited it in a while. It seems with her the phrase, use it or lose it really is true. I am glad Jen keeps a great eye on her and seems to know just how to 'turn on' any muscles AJ is giving a vacation.

Ayden Jane has been funny in the last few days. She is trying to say looong sentences, but is unsure of herself so she talks really quietly when she does. Of course, that makes it so much harder to understand her, but I love that she is attempting to create more complicated sentences. Today's big mouthful was, "can you get my drink cup out of the car mom." Okay, so it was more like, "can you get drink cup out car mom." I was still impressed. I know it was just a month or so ago and I would have heard, "drink mom. drink mom. drink mom...."

Thursday, April 29, 2010

A Good Night

We were at the soccer fields tonight, yes, just like every other night! This was for Mckenna's practice so it is the field with a great playground. Ayden Jane has a friend there who is also a little sister of a soccer player so the two of them play while the sisters practice. Her friend is a year older than Ayden Jane and much more verbal, but she is always excited to play with AJ and so patient with her. I chatted with the mom and it was a great conversation. She is so honestly interested in AJ's story. Not the interested with a side of pity sort of thing where you begin to wish you hadn't said anything for fear of AJ being treated like she is contagious. Or the interested until it is complicated. Or even the interested because it is a sort of stop and stare kind of thing. It was that rare conversation with someone who already knows and really likes your little one and is interested just because they want to know her better. As we talked, the mom talked about running and we got on the topic of running the marathon for a fund raiser... Okay, so maybe the t-shirt with the Foundation for Prader Willi Research on the front and the 40 names of kids with PWS on the back spurred on that conversation. Anyway, she wants to run the marathon with us next Feb.! Amazing. I know AJ is cute and all, but when other moms are willing to run a marathon for her after knowing her for only a couple of months! Again, amazing.

Ayden Jane was in a great, alert, full of energy mood tonight. She was totally into climbing. She has been climbing the curved sort of bars (see picture in previous post) but had not been able to climb 2 other sorts of straight up ladders. Well, tonight she climbed every last one of them. Repeatedly. The funny thing was her little friend would get part way up, get scared and want help down. Yep, little Ayden Jane was out climbing her friend who is a year older! Of course, AJ was also risking life and limb as she was up out of my reach and kept trying to go down BIG slides head first. I hope that fearless streak wanes a bit as she ages!

Tuesday, April 27, 2010


Ayden Jane wakes up talkative most days. She was just cracking me up this morning, not so much what she says, just that she keeps on talking. Here are a few glimpses into her language.

Wakes up in her crib. AJ: Mom, get me out....

Taking Noah to school. AJ: Mom, thank you for my new shoes. (Repeat 100 times getting louder until acknowledged for 10 of them) Mom, thank you for my new purple shoes. I love my new purple shoes...

We stopped at a convenience store on the way and I sent Noah in and waited in the car with AJ. AJ: What Oah doin'? Me: getting a drink and gum. AJ: Why Oah do dat? Me: What are you doing? AJ: I sittin' in my seat belt...

We head to school to drop off Noah. Noah: Hey Ayden Jane. AJ: sup Oah. (she has been trained for that one) After Ayden Jane has pointed out every tree and flower on the way we stop at school. AJ: Oah, get outta my car. (insert grin) Noah: Bye Ayden Jane. AJ: I yuv you.

We get home. AJ: I have water in Ayden Jane's cup. A few minutes later. AJ: I play out with Sadie (the dog)

I sit down to type. AJ: Mom, Mom... look me. Mom, Mom I need play doh. Mom, Mom watch...

Yep, I think the language skills are coming!

Monday, April 26, 2010


We had a genetics follow-up today. I used to dread these visits because it seemed like the Dr. just picked apart Ayden Jane... Of course, that was when he was trying to diagnose her and was looking for clues. Since she was diagnosed and started to really gain ground, it has sort of been more like going to show off.

Ayden Jane was great. She was a bit wary of him, but showed her stuff enough to get a stamp of congratulations. Mostly we keep going because Dr. Pai wants to keep seeing her and he is truly interested in watching how awesome she is. He was, by his own admission, a bit behind the learning curve for PWS. He was surprised to learn from us that growth hormone is started so young. He would have waited until she was older to even refer her to endo... To his credit, however, he listens and uses us as 'his link to the PWS community and research.' He is happy to read and give his opinion/explanation on anything I have questions with. He is willing to run any labs we are interested in.

The only surprise of the day is that Ayden Jane really has not gained any weight or grown in the last month. The lack of weight gain I am a good with, but I do wish she would grow a bit. It is hard to believe too because I swear she seems bigger!

I take my brain in circles over her gh dose. She is on .4 genotropin daily... still. When we checked her levels at the last endo visit she was in the high normal range, but is theoretically low dosed for weight. We see them again in 2 months and I am wondering if the lack of growth is an indication that it is time to head for .5. I can argue in my head for both raising and staying.... Only problem is I just don't know! I can really drive myself crazy over things I don't really have control over, enough information to determine or can possibly answer. I guess it is just part of the package with Ayden Jane. Stressing over decisions with no clear cut answers.

Well, I guess I will just focus on the fact that the 'food work' we have done is being successful even though I feel I have been slack. Pat myself on the back and get back to work tomorrow!

Saturday, April 24, 2010

"She is all better"

So Ayden Jane is doing awesome. I don't deny it and I love it! Sometimes it is hard though, when talking to people. I need to do a better job of just celebrating the fact that she is doing so great and letting people celebrate that with me. It is just hard for me to put aside all the fears I still have for the future. Yep, we have mastered the art of walking and climbing and even running but what about social skills and future learning disabilities. Will her metabolism come to a screeching halt? Will she ever live on her own? Will she have friends, real friends? Will she enjoy school? Will she survive middle school? How many of the things she is 'at risk' for will come true?

I know people just mean well when they say, "I can't tell there was ever a problem..." It is a compliment, but something inside of me just wants to scream, "IT ISN'T OVER YET. Don't stop praying for her, don't stop praying for us, this disorder sucks and it is life long." I want to tell them about the incredible kids I have met that are struggling much more. I want to convince them that we do and will fight every minute of every day...

I really need to learn to relax!

Friday, April 23, 2010

Fun stuff

Wow. I can't believe it has been 2 weeks since I have stopped to type. I have had lots of ideas fly through my head, but not 2 seconds to work on them.

Let's see, Kayla had prom, my Dad had a birthday, Noah had a birthday (can't believe he is 15), Mckenna had state cup for soccer out of town, Ayden had her normal therapies... all in the same week! Ayden Jane has been great and has traveled really well. Our 'food work' has not been the greatest with being on the run so much. We will see Monday when we go for a genetics check up if weight is becoming an issue. Also, last Wed. we did some testing for gross and fine motor skills in PT as part of an upcoming review. Jen gave her credit only for what she was able to really do that day so no bonus points are included. I am excited to see how she fairs and hoping for confirmation that all the work is paying off.

Just a goofy story from this evening. After her shower, Ayden Jane was running around 'nakey' as she loves to do and was bouncing away on her horse. I told her to come get her diaper on and she, of course, said no. Then I told her with that Mom voice, "Ayden Jane, come here please." Her response was a great big grin and a loud and clear, "Why Mom?" She has never asked me why before and it just struck a hilarious chord with me. Now likely I should have disciplined her, but alas, I couldn't keep from laughing. Kayla was no help either as she covered her mouth and turned away from AJ but shook with laughter. No doubt Ayden Jane will be, if she isn't already, spoiled rotten. We all just enjoy everything she does. That is the blessing of having a kid who has worked so hard to... well, to be a toddler.

Also, I witnessed another first for Ayden Jane. We were at the soccer game (where else would we be) and AJ was playing on the wheel chair ramp on the side of the stands. There was another little boy there and I did not see all that happened, but when I turned my head to check on them I saw Ayden Jane push him! Not really push him to be mean, but pushed him against the railing to get him out of her way and beat him down the ramp. Now most parents would immediately scold there kids for such behavior, but I was ready to buy a round of drinks! The boy was bigger and a bit older. He was a little bossy and was definitely leading the play between them, but Ayden Jane had not let any of that stop her and she was delighted with herself for reaching the bottom of the ramp first. I have to say I love the spunk.

Tuesday, April 13, 2010

So What Does She Eat?

It seems we concentrate a lot on what Ayden Jane does not eat, sometimes I get the question what does Ayden Jane eat.

I do not really count anything or keep any formal track, but I do sort of keep a running estimate in my head of the sorts of things she has eaten through out the day. For example, if she eats a lot of fruit early in the day we just sort of skip it later... I try to be sure she is getting a protein and/or good fat with every snack and make sure she does not go too long between snack/meal time.

Here is a sample day. Ayden Jane is 2 1/2 and about 28 pounds (I think, but I don't even own a scale! Yikes!)

Breakfast: 8:30 or so

2 scrambled omega 3 eggs
fruit and walnut salad from McDonald's (but not the yogurt)
Tablespoon of applesauce to get the supplements in her
Fish Oil, vitamins, carnitine fumarate, ribose, B-12 and creatine

Snack: 10:30 or so

almonds and a piece of dark chocolate

Lunch: 12:00 or so

1/4 to 1/2 cup chicken salad with walnuts
a few blueberries

Snack: 3:30 or so

Celery sticks with almond butter
Hard boiled egg white
a couple of apple slices

Supper: somewhere between 6 and 8, she really could care less about supper

1/2 an avocado with a bit of plain yogurt and supplements mixed in. (same as morning supplements) What ever vegetables or meat we had with supper that I can get her to eat.

I have never done the math to figure out how many calories... the kid eats, but there are days I swear she eats more than Mckenna! As for liquid calories, she drinks water, unsweet tea, sadly a few sips of diet coke and probably 6-8 oz. of almond milk throughout the day. I would also say that she also eats another serving or two of almonds in bits and pieces when we are picking up a big kid or watching a game... and just cannot get to snack quick enough. When she is playing hard, she can run out of fuel suddenly so I always have something she can eat with me. She rarely asks for food at these times, you can just 'see it'. She slows down, her balance gets a bit off, she will just start to stare and her response time triples! It still amazes me how quickly she will rebound with a small snack though. As she gets bigger she can go longer between fuelings and 'crashes' more slowly so hopefully it will be a thing of the past soon. This summer when we are beaching and swimming would be nice!

Sunday, April 11, 2010

No more baby

I have been struck recently by how 'big' Ayden Jane is getting. Not big in a bad way like escalating weight percentiles. Just your common variety turning into a big girl big. She is turning from a toddler into a preschooler. I think the most surprising thing about it is that I am actually a little sad about it. I know, I know. Everybody is sad when their kids 'grow up' seemingly so fast. I guess since there are many days where I feel like I have been raising kids forever I didn't expect to have that never wanting it to end feeling. Don't get me wrong, I am overjoyed with every accomplishment, every new word, every new skill, every time she uses that goofy sense of humor... I guess mostly I am just in awe of God's Grace with every day I get to experience the amazing feisty little spirit of Ayden Jane's.

I spent some time chatting with a friend today while he held his six month old baby boy. I am still so amazed when I see babies now. I am amazed by what they can do and by how big their hands and feet are. It is hard to believe how long they stay awake and what noisy little creatures they are. Even though we had 3 of these loud, messy, active, demanding... little creatures before we had Ayden Jane, we just became so used to the way she was as a baby. (just use an antonym for each of those adjectives and that was AJ) I thought back to Ayden Jane at six months and I remember still being very careful with her head and just starting PT. She has come sooooo far!!!! It has been a painful, bumpy ride but one I would never give up and will always treasure. If course, if a cure wants to come along and smooth out the road I'll take it!

Friday, April 9, 2010

Spring Break

Well, after a cold winter in SC complete with snow, the kids were itchin' to go surfing. Kayla, our oldest, went with the youth group to FL where the water was warmer. Noah and Mckenna, however, decided to brave the cold ocean. I felt sure Mckenna would be in for a few minutes (if she even got in) and then would declare it too cold. I could not have been more wrong! Noah was great and went out with her for about 30 min. spurts at a time.

I was reminded this break of the energy level Noah operates with. I pray that is Ayden Jane's basic energy level/metabolism and then if it is slowed a bit by PWS than she should end up close to normal! Let's see. Just to recap 2 days in Noah's break. We headed out in the morning to find some new cleats. It went quickly and then he, of course, needed to break them in. He called a friend and spent about 2 hours on the soccer field messing around... Afterwards there was some swimming involved and then off to a soccer game. He plays midfield and it was a very tough game so he seemingly never stopped moving. After the game he went out with some friends visiting from out of town and then spent the night at another friends house so that they could hit the surf bright and early. They were in the ocean by 7, at the weight room for soccer by 8 and then soccer training on the beach. Once that was completed he surfed until 3. You would think he would be about to keel over, but noooooo not Noah. He refueled and then pleaded to go back out to the ocean by 6:30. He did make it home at a reasonable hour... Tomorrow? Oh. Just another tough soccer game to start the day...need I say more. Oh how I hope Ayden Jane managed to receive some of his gene pool!!

I admit I LOVE the activity and have had a blast this Spring Break. I just wish it could last a few days longer.

Wednesday, April 7, 2010

Cookies, Complicated?

I am home making cookies right now. As I make them, I am struck with how strange life on planet Prader-Willi can be. The cookie has always been an example of a simple pleasure. I remember coming home from school to the fresh baked smell or watching the tins of cookies fill up around Christmas time as my mom took on cookie baking as a second job for about a month before Christmas. I have also made cookies through the years for and with my kids. Watching them lick the bowl and grin ear to ear is like the definition of simple pleasure. It seems the perfect simple pleasure for the 6 foot 3, nearly 15 yr old, hyperactive boy in the house!

Enter Ayden Jane. Now when I look at cookies I see danger. For Ayden Jane, this simple pleasure becomes more of a deadly sin. I figure there are a couple ways to go about solving this dilemma. I can try to find recipes that will replace... not happening. I can ban such substance from existence. Not likely that will stick for long. I think we will just have to use a combination of indulging the 'big' kids when AJ is asleep or maybe spending the night with _________. And find other indulgences for AJ as she grows. Going out for treats seems to work really well. It is just less stressful than having them around the house.

So far, AJ is perfectly happy with an occasional piece of dark chocolate as a treat. In fact, when she gets one, we usually tell her, "only one." Now, she calls these treats Only Ones. My game plan for preschool birthday parties next year is to give her dark chocolate or a nut butter muffin (which she calls a cupcake) as a replacement for whatever treat is given. Hopefully, she will be satisfied with these and be able to enjoy the party.

So, yes the cookie looks simple enough. Question is: Simple Pleasure, or Deadly Sin. Both perspectives need to live in harmony in my house. So far, so good.

Monday, April 5, 2010

Spring Break

Sticking with the theme of technology, this (hopefully) is a picture Mckenna took of Ayden Jane at the playground with my phone. The arm spotting her is mine and the bars get high enough that I can just barely touch the bottom of them. She did really well with it and wanted to climb over and over. The only problems she had were: 1) getting distracted by the other kids on the playground and 2)trying to go too fast. All this was at the end of a busy first day of spring break! Woo Hoo!!