Labs

We have the results of Ayden Jane's most recent labs.  Things are still not right on the inside.  Her IGF-1 is just not coming down so we reduced her gh dose for now.  Other things indicate that the inflammation is taking it's good old time going away.  Other interesting thing is that her creatinine was low.  I stopped supplementing with creatine during the illness thinking that it would help with some of the fluid balance issues and because it can be tough on the kidneys...

Due to the recent accidental experiment with B-12 and the discovery that dosages definitely need to be readressed I am on a supplement mission.  With the help and guidance of Ayden Jane's endocrinologists I plan to revisit our supplements and maximize their use.  I have already increased the B-12 and started to add back in the creatine.

Next up comes D-Ribose.  Back when AJ was about 18 months and scrawny, even a bump in gh did not help her put on an ounce of muscle mass.  Not until I added the combo of creatine and ribose.  I thought I saw some good benefits from ribose, but it was challenging to manage the drops in blood sugar it can cause.  Ayden Jane's blood sugar was tough to keep up as it was...  She is much more stable in that category now so I am thinking it is time to give it a go again.  It has been ordered and is on it's way

Consensus so far?  Teachers report a great day at school.  Ayden Jane is LOUD and hilarious.  Only problem I had today was I had trouble understanding her a few times because she is talking so fast!  Food? No issues. Liquid?  Voluntarily drinking fluids... asked for and drained a full bottle of propel zero.

I'll keep you posted!

More B-12 and Spring Break

Spring Break was a great week!  It was like a 3 part vacation with family coming in the first weekend over Easter, some beach, playground and spring cleaning time in the middle and then Kayla bringing 4 friends from Clemson in on the last weekend!

Ayden Jane and I tried to clean up a bit and play a lot mid week.  I got her back on the B-12 and it has been awesome!  She is much more her typical self with behavior.  I even bumped her dose and bit we had this bizarre thing at the playground.  She has tried for a loooonnnggg time to walk along the edging of the play equipment on the playground.  It is a low, black plastic wall to keep the mulch in.  She likes to try to walk on it like a balance beam, but has not been very successful.  Last week she popped up on it and started walking foot over foot a long way and was just rock steady.  It was so strange!  Just a week earlier when we were there she could no where near come close to that!

Kayla a company were great to have around.  They are really nice girls and they were so great to Mckenna and Ayden Jane.  Mckenna tagged along to the beach and Habenero's and where ever.  She played Mario Cart with them and they never felt like she was a bother.  Ayden Jane was thrilled she always had someone to talk to!  AJ went swimming a bit, but it is still cold.  She is still determined to get in and ride waves as soon as we get there.  After 20 or 30 minutes in the ocean she wants to get out and warm up but so far the breeze at the beach has made warming up impossible!  The kid literally turns purple and requires a hot shower to get warm again.  (I know, bad parenting... but I take her home to the hot shower!)

Spring Break

I have been oh so slack about posting lately.  If I had to give a reason I guess it would be that there are too many things to talk about.  So, instead of trying to cover anything to update you on AJ, I am going to check in on the other 3.

Last weekend Kayla surprised us by getting a ride home for Easter.  It was a very short visit, but it was so fun to reconnect a bit.  Gary, Noah, Kayla and I stayed up very late on Friday night listening to stories and being entertained by Kayla and Noah catching up.  They really do miss each other and it will be great to see them head into the surf together this summer.  Ayden Jane attached herself to Kayla.  Everywhere we went she wanted to go in the same car as Kayla.  If Kayla sat down, Ayden Jane sat on her...  It was fun to see Kayla so surprised at some of the things Ayden Jane says.  When Kayla was home at Christmas, AJ was still fighting all the bacterial infection and just was not so much herself.  The verbal skills that popped out after she got better are soooo entertaining!

Kayla is finishing her freshman year at Clemson.  So strange to think that this time last year she was 'caving' and choosing to go to Clemson.  Now she would say it was the best decision ever!  She has thrived at college.  She is bringing some friends here this weekend to visit the beach.  It will be nice to meet a few people from her new life. She will head back to finish up and then will get to head to Florida and spend a few weeks doing 'student research' at UFL with Dr. Miller and some of her colleagues.  So cool.  Finally after that we will have her home for 3 months!

Noah is turning 17 soon.  He is working on where he wants to head to college... all that sort of stuff.  I think to some extent the end of his junior year is sort of like preparing for the storm.  His senior year will be filled with college applications, soccer and working.  Oh, and choosing where to spend the following four years and start his future!  He has had several colleges contact him regarding soccer, but not ones that he even had on his radar.  Merging what he wants in a major, finding a soccer program that he will fit well with and hopefully finding an affordable option will be challenging.

Mckenna is turning 11 in a month.  She will head into middle school age next fall and has lots of great kids for friends.  She is enjoying art and soccer and was invited by her music teacher to be a part of a program for music and drama.  She is brilliant and sensitive and truly just beginning to 'find' herself.

That's the wrap up around here.  I will try to be more interesting next time.

B-12

So, here is part of an email I sent to Ayden Jane's endocrinologist.

Okay, so we have mentioned supplements and I told you that some of them had dramatic effects when young but I wonder sometimes if they make a difference now.

B-12 --  My, oh my, oh my!  Here is the scoop.  I give Ayden Jane 2 doses of B-12.  One contains 1000 mcg of cyanocobalamin, B-6 and Folic Acid.  It is a chewable from Bluebonnet.  The other is 5000 straight methylcobalamin chewable from bluebonnet.  I ran out of the methyl form end of last week and didn't make it to the little health food store in town that sells them.  No worries... I went Monday and they were out of them because they were back ordered.  Hmmmm.  Next order coming in Friday... eh, I could just order online.

Monday AJ had a not so great day at school, but manageable.  At the playground during Mckenna's soccer practice she melted down over peanuts.  She could not plan past the one little road block... Then she chose to watch kids play way more than play.  Odd, but she is 4 I figured.

Tuesday at school, she decided to help herself to a snack of blueberry muffins!!! (They caught her one bite in)  She has had NO issue with eating a different snack and has turned down an option when offered. She proceeded to argue her case over these and to have melt downs over nothing and her teacher (who is AMAZING was really concerned!).  Horses went fine in the evening and then she was uncharacteristically difficult at Noah's game afterwards.  We just took her home early and she went to bed.

Wednesday she woke up great and I expected a great day at school.  Wow was I wrong!  When I picked her up, AJ had been asking for food, totally unstable emotionally and not able to solve a single problem for herself.  They actually had to remove her from the room and take her for a walk to calm her down.  She has never struggled anything like that. Next came PT.  I did not tell Jen because I wanted to see what would happen.  Finally, after about 45 min. 2 major falls and Jen getting concerned something serious was going on I told her of my suspicion that it was B-12 related.  She said that what she saw was AJ's motor planning and body awareness were way off.  Ayden Jane also had moments of staring into space sort of half here.

So, Wednesday after all this had transpired I had a chance to think about it all over the course of the past few days other notable things:

1) The past several days Ayden Jane was R E S T L E S S in her sleep at night.  She was talking, fell out of bed and was just generally all over the place in her sleep.

2) She was constantly attached to me.  And I mean touching, squeezing, banging into, climbing on, wrestling with... 

3) Argumentative.  And I mean more than usual :)

4) Falling a lot.

5) Completely unable to talk and do anything at the same time.

6) Fell asleep in the car on errands.  This is the kid that talked in the car on a trip to Richmond from bedtime to    10 pm because she just doesn't sleep in a car with a captive audience!!

So what is a Mom to do?  Drive to the not so near vitamin shoppe and see what I can find.  I found this: http://myessentialsource.com/?p=146

I gave Ayden Jane 2 Wed. late afternoon. She slept much better... Although did wake me up at one point to tell me Go Bears!  (Gary's a Chicago Bears fan)  Of course she was still sleeping, but she was in one place much longer with little thrashing about.

Then 2 Thursday morning.  Thursday at school the report was that she started to spiral down, but was able to catch herself and turn it around.  She skipped the nap Thurs. afternoon after school even with Easter party (and not food issues), and an OT eval.  She did great in the OT eval (Which means she did poorly enough to qualify), although fell off her chair 3 times... and a few other non AJ like things.

Bizzare!  But sooooo not giving up the B-12 EVER. 

No Thank You, She Doesn't Eat Cookies

We were on the soccer fields today.  I know, shocking!  While we were there, another little girl about Ayden Jane's age came over to play with her.  They were very cute playing with some block sort of things that we brought.  After a while, the little girl went over to her families blanket and invited Ayden Jane to tag along.  No worries...  Then the little girl's parents started to give out snacks to their kids and offered Ayden Jane a cookie. Ayden Jane was great and tried to say no but mostly just came my way.  The dad asked me if AJ could have a cookie with them and of course, I answered, "oh, no thank you but she can't have cookies."

It seemed so 'normal' as it came out... until the look on his face.  I began to realize how not normal a simple sentence like that must sound to the average person. It is typical in our world now...  It doesn't even seem far fetched anymore to think that Ayden Jane hasn't had a cookie.  In that moment, I wasn't sure what to do.  This man who I will likely never see again, is thinking I am a lunatic Mom who doesn't even allow her kid a cookie?  What sort of parent doesn't allow her kid a cookie?  Should I tell him why?  Ayden Jane has had so much fun playing with his daughter and has totally held her own.  Today, she was just a typical little sibling on the side line.

A bit later, Ayden Jane was talking to another parent and the topic came to birthdays... It is a common topic with Ayden Jane as she, being the youngest, is in a very large hurry to grow up and catch up with her siblings.  The mom asked AJ what kind of birthday cake she likes for her birthday... Ayden Jane was silent for the first time in hours. LOL.  I handled that one much better just saying, remember Ayden Jane, we didn't have birthday cake, but Daddy made a special treat with you.  She got excited and jumped right back into the conversation and told the lady all about making dark chocolate covered strawberries and oranges with her Daddy.

I guess it is not really any different than parents who have their kids on gluten free or ketogenic or other special diets.  I just need to figure out a good short version of why Ayden Jane is on a special diet.  I struggle with the short version thing.  PWS just doesn't really have a short version!

Busy AJ

So, tonight Ayden Jane and I rode bikes to the park.  She played (which is code for climbed) for a bit but then we rode back home because it was getting dark.  That was after riding scooters and the power wing, swinging in the back yard and trampolining.  It was a lot of activity I thought!  It has been a crazy week of up late soccer games and playgrounds so we were just supposed to be laying low!

Once it was dark outside, Ayden Jane asked to play inside for a bit and I figured it may settle her down and get her more in the mood for sleep.  I wandered back to my bedroom to, surprise surprise, fold some clothes.  Ayden Jane came in a few minutes later, "Mom, come see.  I remember how to do a hand stand."  Yea, so much for settling down...  She wanted me to do one too... notice there is no picture:)  She kept doing it over and over and asking me to measure how high up her feet were!  I have no idea where she gets this stuff!

Language Confidence

So, Ayden Jane has been on quite the language spurt lately.  I think it really comes from confidence.  She is speaking up to everyone, every where!  She struck up a conversation the other day at the soccer field with a husband and wife who were there to watch an up coming game.  The boy they were watching is on Mckenna's team and so during warm ups the were entertained by little miss AJ.

I find if I put some distance between myself and Ayden Jane during her conversations that she speaks up and does not look at me to answer or explain...  So, I stepped away.  After about 15 min. or so I headed back over.  This family knows nothing of Ayden Jane's history... so it was entertaining to hear their comments afterwards.

Things like, she really thinks before she says things.  (processing delay)  She speaks slowly and deliberately.  (years of speech therapy and articulation drilling)  She is so focused as she engages you in conversation (can not multi task)  She is very deep and persistent in her questioning.  (borderline socially inappropriate questions)

Of course, I just enjoyed the minutes of my little girl holding her own and was so proud of her for all that she has overcome speech wise to have a long conversation on the sideline.  If they only knew the miracle they were a part of!  Somehow, telling them would have just spoiled it all.  They very much enjoyed the overly inquisitive, enchanting little girl...