I Have a Great Life

Lately, Ayden Jane has really been taking on the responsibility of Prader Willi Syndrome.  That sounds really strange.  I am just not sure how else to say it.  She is 6, but she has such a maturity about handling all that PWS has to 'offer'. 

Starting with a funny story to illustrate.  Ayden Jane definitely likes to be 'the boss'.  She is sure she knows what is best pretty much all the time, but she is 6 so it is not often she actually gets to play this role or make the rules.  One morning when she was particularly exasperated with having to tow the line my way she says, "When I get big and go to college I am not going to listen to you anymore.  I am going to be the boss and do anything I want.  Well, except eat sugar, but I'm going to do everything else I want to.  I will go to bed when I want, I'm going to wear whatever I want..."  It really cracked me up.  Oh the sassy tone!  I love, though, that she knows that making good food choices is just non negotiable. 

Then today after school.  She hopped in the car and said, "Mom, so how do you think Dr. Miller is coming along with fixin' my Krebs Cycle?"  Not your average afterschool question...  We chatted a minute about that and then I told her she could ask Dr. Miller when we see her in June.  That lead to a whole conversation about conferences and why we have conferences... 

I decided to fill her in on a little plan Dr. Miller has been considering.  I told her that Dr. M might want her help her with talking to some parents of kids with PWS about what foods make her feel good and keep her brain working well and how sugar makes her feel.  She said that those are easy questions.  That eggs, avocado and coconut make her feel good and that sugar makes her feel yucky.  She wanted to know why the parents wanted to hear from her cause she is just a kid.  I told her because we don't know what it feels like to have Prader Willi Syndrome.  We talked about how when a mom and dad are told their baby has a problem and will have to work harder and have lots of rules about food and stuff they can get a little scared or sad.  They aren't sure that they will be able to help their child.  She told me that they can do just like we do.  Work hard at stuff if they need and look on the computer and find the good foods that are just as good as sugar even though they don't have any.

After a bit more discussion Ayden Jane about made me cry.  She summed it all up by saying, "It's hard sometimes having Prader Willi Syndrome, but don't worry Mom I have a great life."

How did a 6 year old get so smart?!  Such an incredible spirit in this kid.

Kayla

The following is letter Kayla is working on describing what she is doing this summer.  It sounds pretty awesome and we are proud of her willingness to stretch herself and serve.

This summer I have the incredible opportunity to intern with Heart of Christ Ministries in La Ermita, Honduras. This faith-based ministry seeks to “impact the world by sharing Christ’s love in the form of serving others, meeting their needs, rescuing them from their suffering and discipling and empowering them to become the solutions to the problems around them.” Heart of Christ has many ministries to serve the people of Honduras. Their main ministry is to rescue victims of violence and abuse. Also, they help provide women and children with food, provide basic clothing for those in need, work with local doctors and clinics to better health care and provide necessary treatments, provide school supplies for those who need it, and provide disaster relief when needed. The opportunities to serve with this ministry are numerous. There are opportunities to preach and train pastors, visit orphanages, medical brigades, construction, and teaching. My internship will be specifically in languages and medicine. I will be teaching English in local schools as well as teaching sign language to the three deaf children in the local village. Additionally, I will be able to attend medical brigades to surrounding villages and provide the much-needed medical attention. While there, aside from my role as an intern, I will be living on site with 8 toddlers and 2 special needs children and will be able to spend time with them daily. I am so excited for this adventure and cannot wait to see what God has in store for me this summer.

            I will be in Honduras for 10 weeks. The cost for my daily living is $15 a day, as well as the cost for airfare. Altogether my trip will cost me about $2000. We have set up an account specifically for this Honduras mission trip in my name. I need your help to get there. I ask for your support in any way that you may be able to give it. Financial support is always a blessing, but prayer is also tremendously important. I will be in a very different environment and my comfort zone will be stretched daily. Thank you for all your prayer and support!  

Endocrinology

Today was a visit to Dr. Clark.  She is our 'local' endocrinologist and she is awesome.  Local is in quotes because it is still a nearly 2 hour trip each way.  Don't get me wrong, it beats 6 hours to Florida, but still doesn't always feel super local.

We see her every 6 months and she has a great eye on Ayden Jane.  Dr. Clark hung with us through the 'winter of infection' when Ayden Jane sort of fell apart.  She has been helping us to get her straightened out again and yes, it is now 2 years from when things hit rock bottom.  The numbers, you know, height and weight numbers, two years ago showed AJ's growth slowing, weight rising and BMI not good.  A year after that things were a little better, but still not where they needed to be.

Finally, 6 months ago we had all supplements at the optimal dose for AJ and her lab work finally back to a good place. 

Today, as we reviewed how Ayden Jane was doing, we found that the last 6 months she grew a lot.  She grew 1 3/4 inches.  That is nearly double the expected growth.  Although Ayden Jane's weight is not optimal, it is not far off of where it should be for her height at this age so her BMI is significantly better than a year ago and most of the improvement was in the past 6 months.  I am thrilled because with as cold and nasty as this winter has been I felt like she was not as active as I'd like.

So excited about where we should stand by the end of an active summer!

We also did a bone age x-ray.  Last year at this time Ayden Jane's bone age was 1 year advanced.  That's not the end of the world, but it is not good.  If bone age is advanced then growth plate close early and bone growth ends early.  Advanced bone age is often a signal that gh is too high.  We thought that Ayden Jane's high IGF-1 levels due to her illness was likely to blame.  Today that was confirmed.  Her x-ray's today show her bone age still advanced, but only by 6 months.  Yippee!!

We talked about doing labs because Ayden Jane is actually quite under dosed if you do a weight based dosing of gh.  We are going to wait a little until all the crazy skin stuff is passed and I am sure that she is/has been healthy for a good while.  (oh, I'll fill you in on the crazy skin stuff another night)

Lastly, a great AJ story.  As we drove to endocrinology I decided to swing through Sonic for drinks.  Ayden Jane thinks that an unsweet tea with a bit of raspberry is a huge treat!  I handed it to her and waited for the food I ordered for me.  Ayden Jane says after taking a sip, "Mom, can you taste my tea?  I think it is sweet tea and it will give me a giant headache and take away all my energy."  I had forgotten to taste it and Ayden Jane had saved the day.  We talked about what a great choice that was and how proud I was of her for taking great care of herself.  She really amazes me sometimes..

IEP

We had Ayden Jane's IEP meeting last week.  It was really pretty awesome.  I listened as they talked about how great Ayden Jane is doing.  How her scores for pretty much everything except for writing place her right in the middle of the pack.

Socially they say she gets along with everyone and has lots of friends.  They have had no behavior issues and would love to have a classroom full of Ayden Jane's.  They love how hard she works and that she never gives up.

Since things are going so well, Ayden Jane will stay on a consultative IEP.  She will continue with OT services because, well, she desperately needs them...  Otherwise she will be in the regular classroom with her special needs teacher checking in with the regular education teacher to consult on anything needed. 

Hopefully over the next 5 or 6 months before first grade Ayden Jane's writing skills will continue to improve.  The only concern I have is the writing demands of first grade and how she will be able to handle them.  No time for concerns for a while.  Just going to bask in all the positivity. 

First Big Bike Adventure



 

 The sun finally came out!!  Ayden Jane has been riding her bike with no training wheels now for, oooohhhh, two weeks.  So the crazy college kids and Mckenna decided she was ready for her first big bike adventure.  Off to the beach it was!  They rode all the way there, took a walk down the beach and out onto the groin.  (you have to love the Danger Keep off sign)  I stayed by the phone in case Ayden Jane needed to be picked up but no such call arrived.  I decided to drive out and be ready to bring Ayden Jane and her bike home but to my surprise, she pedaled herself the whole way back too.  It's probably 2+ miles each way?  I guess I will have to measure it.  It was a great day and Ayden Jane was so proud of doing a big kid thing.

Illness and Reading

Yes, I realize that these two things do not go hand in hand.  They both just are taking over my day and consuming my thoughts.

First up illness.  Ayden Jane was tired and puny Friday night.  We figured it was just a long week.  Saturday she played her soccer game in the morning, but took a LONG nap.  Not typical.  It was a clue but I wasn't sharp enough at this point to pick up on it.  Then Saturday, after the long nap she asked to go to bed at 7:30.  Yep.  Big clue....  Still I didn't catch on.  She spent the morning before church making me angry by asking a question and then arguing with whatever answer I gave her.  You know, "Mom, do I have time to play before we get ready for church?"  I answer, "you have plenty of time to play."  She argues, "well, I don't have plenty of time because church is in the morning so if it is in the morning than it won't be too long...."  Okay, why was it you asked?

After church we went to Wendy's.  (I know...)  By the time we were finishing up, I realized her eyes were glassy and she was pale and I was not a very good Momma for taking so long to figure this out...  The last straw was when she asked if we could go home because she was freezing.  I wasn't even cold, and I'm always cold even when she is roasting.

So, home we went.  A two hour plus nap and an early bed again...  Fever had started by the afternoon but was not high.  Then in the middle of the night she was on fire.  It was the first time I remember her having 'fever dreams'.  The first she was 'brushing off' her legs and arms and talking about all the ants crawling all over her and how she couldn't get them off.  That didn't last long.  Then the one that seemed to bother her more. She would drift off and then jump.  She said that she kept getting lost.  After several times, she finally fell asleep with my hand heavy on her.  She woke up very feverish and so went our day. 

So for the unrelated topic of reading.  The past two nights when Ayden Jane has picked out a little Bob Book to read to me she has blown me away.  I had bought a new, oh wait!  Santa brought her a new box of books at Christmas.  She has not read all of them yet and her reading has been decent but I was still waiting for it to really take off.  She has quite a few sight words down and has been slowly sounding out consonant vowel consonant words. 

So the past two nights Ayden Jane picked up a new book and just read it.  Yep.  Read right through.  So what is different?  Instead of a word like Peg being sounded out as pp....eeee.....gggg.  Peg.  She had that break through where it became, p... eg.  Peg.  Whew!!  Many of the words were just read straight out and others were sounded out very quickly.  Such a leap.  So awesome.  I could have listened to her read all night long!  Oh wait.  That will be tomorrow when she gets her reading log for the month of March.
 

IEP Time

Ayden Jane's annual review or her IEP is scheduled for Tuesday.  I know a lot about IEP meetings as I am holding them these days as a long term substitute for a caseload of 17 students.  I know that students need to be compared to their same age peers and show that they are struggling.  It is necessary because you have to justify services.  Also, to examine where skill deficits are so you know what areas to target.  I know because I am doing all of that with my students.

Still, it is not fun to listen to areas where your child is far behind their peers.  Of course there will be lots of discussion about your child's strengths, but it is often hard when looking at numbers to focus on those parts.

Honestly, I think that I have a pretty good handle on where Ayden Jane is.  I think that she is an average reader.  I think that she has average ability in math.  I know that she is very behind with writing.  So, I am a little nervous.  I am hoping she really is average in reading and math.  I could be wrong and she could be falling behind in those areas.  I think that she does okay socially, but I'm not there often so how do I know?  I think that she is working hard but maybe she is not getting a lot accomplished? 

So, I look forward to the report because I truly do want to know how this year has gone and hear how prepared the school thinks that she is for first grade.  I am hoping to hear lots of great things and not have surprises about things I think she is doing okay with...  I want to discuss options for teachers for first grade and pray that we find another fabulous match like we did this year.

I do know that she is happy at school.  She believes she is doing well and is confident in her abilities.  Oh how I want to keep her feeling that way for as many years as possible.