FPWR Confernce

As always, we had a great time at the FPWR conference. I think at this point the conferences have become a bit of a family reunion. You see some of the same people each year and put real live personalities to the names and faces you have become so close to through technology. 

I remember the first years, the science blew me away! I could not believe how many scientists were working on helping our little Ayden Jane! (okay, and all the other kiddos) At this point, the exhaustion from so much information on Saturday was not as bad as years past so I guess that's progress.

This year we arrived a bit early to help out where we could and because our flights worked out better that way. We did not know there was a 'science' day ahead of the conference - likely because we are not scientists. But Kayla, in particular, wanted to listen in. I asked permission and we slipped in the back for the second session. She loved it. I followed some of it but much of it lost me. Still it is oddly comforting, even if I can't comprehend exactly what they are doing, to know that there were so many scientist on the job. The room was full and they were kicking around their ideas with one another. Love having all that brain power on the job of making life better for people with PWS.

At one point in the conference, Kayla asked me what was on my page or blog or whatever because everyone was so excited to meet her. Then she realized that someone was mistaking her for "Ayden Jane's mom." We thought it was funny and didn't think much more of it. After a few more cases of mistaken identity someone pointed out that Kayla was my profile picture on Facebook so naturally people thought she was me. We realized, back in August, I put her picture there for her birthday and had just left it. It's Ayden Jane now... no one should think she is me.

Once the news was out who the real me was, it was really great to meet so many new families. I started this blog a long time ago because there was so little out there as to how day to day life might go. There was not much online about kids doing well with PWS. I just wanted to know it was possible that Ayden Jane would manage an awesome life with PWS. I didn't need a promise it would all end up rosy. Let's be honest, there are no guarantees with any of our children, typically developing or not. The thing we love as parents is that they are born with endless possibilities. We love to dream of what they might become. I prayed God would bring some people across our path to give back the hope that a great life was possible. I searched long and hard and God provided a couple glimmers of hope I and clung on tight.

Supplements

I am heading out of town to the FPWR conference on Thursday with Kayla. Gary will be staying here and manning the home front for FIVE days!! He will still work a couple of nights and I am in the process of making arrangements for Mckenna and Ayden Jane.

Today I wrote out Ayden Jane's supplement schedule. I was sort of shocked!! I don't feel like it is that much to manage because I just do it - almost without thinking and if I forget or mess up something Ayden Jane sets me straight. I get a lot of questions about what and how much.... I give Ayden Jane so I figured I'd post it here:

Morning: Mixed in avocado and a squirt of honey.

                      1/2 capsule of acetyl carnitine

                      1/2 capsule of iron bisglycinate. 

                      7.5 mls of MCT          

                      heaping tsp of flax meal

                Taken in pill form or whatever - just hand them to her.

                      1 laktoferrin

                      1 carnitine fumarate

                      1 probiotic

                      1 b12 chewable cyanocobalamin

                      1 b12 strip methylcobalamin with biotin

                      1 packet coromega fish oil with Vitamin D

                      7.5 mils MCT oil
                      1/2 tablet of PharmaNAC in 6 oz. water

Lunch:  10 mls MCT oil in milk with lunch.

After School: 1 carnitine fumarate

Bedtime:  2 lacktoferrin

                 1 carnitine fumarate

                 gh 0.8

Yep, It takes all of that and a careful diet to keep this kid firing on all cylinders. Her routine has changed a bit over the years and I make adjustments as I see issues. Right now though, we are in a sweet spot and she is doing so amazingly well.  

Things are Good

Several updates. Made it back to the dentist. Ayden Jane is not great with brushing her teeth and, of course, PWS kids are known to have not so great teeth but she still has a great report. Victory! She will need braces, but that just makes us 4 for 4.

Today we headed for Storm Eye Clinic down at MUSC. Ayden Jane was on a mission the past 6 months to wear her glasses faithfully and was hoping to get a reduction in her prescription today. Alas, she is close but she will be sticking with the same prescription for now. She's a little disappointed but honestly, was is such a goofy mood while we were there she took it well.

After our eye appointment we headed up to the genetics clinic to see the doctor who diagnosed Ayden Jane 7 1/2 years ago. I think the last time he saw her Ayden Jane was 3. I have emailed with him a few times and we have touched based over the phone as he has asked if I would be willing for a new diagnosis to give me a call. We didn't have an appointment, he said to just stop by. Little did I know he was going to bring in 3 residents and basically tell them, "this is what Prader Willi Syndrome can look like when it is it well treated with the current protocols." They chatted with Ayden Jane, who suddenly became shy, and I answered a few questions and talked about her diet.  All in all a good visit.

We finished up at the hospital before noon and then headed to grab some lunch and picnic at a playground with some friends that live down that way. The weather was great and Ayden Jane had a good time.

School is still great and Ayden Jane seems more and more settled. This week she did well on her spelling pretest so she will be tested on "the hard words." She's pretty proud of that fact.

Things are good.

No More Yellows

Still haven't had physical therapy since we have donned the new shoes and gone without orthotics.  I think by the time Mrs. Jen comes back to visit she will have been going strong for about 4 weeks. Hopefully that is a good amount of time for Jen to use her super powers to see how things are being affected.

Ayden Jane asks me once in a while how I think her legs are doing. As far as I can tell, all is good. The biggest trouble I'm having is finding time to keep walking and running. I also think that the shoes will break down and part of the no yellows policy will be new shoes fairly often. I guess that's not surprising as Ayden Jane has little feet for an 80 pound kid. That means she does not grow out of them often and, let's be honest, the shoes are made for a lot less weight.

So why the trouble finding time to walk and run? All good reasons. Ayden Jane is a busy kid. She has school, swim team, horses, homework, church, soccer and friends to play with. She is loving life and doing great in so many areas.

We went to Atlanta over the Labor Day weekend to attend a wedding. (an amazing wedding by the way) Travel is always interesting with Ayden Jane. I have to say that I feel like we have passed that point where it is truly stressful. We traveled 7 hours Sunday, then spent the entire evening at the wedding and Ayden Jane did amazing. We did manage to get a dip in the pool Monday morning but much of the morning was spent chatting with old friends and things that held no activity for AJ. Then it was 7 hours back home. She handled it all beautifully and when we got home she said, "mom, I think we should take the dogs for a really long walk because they need and you and I need one too."

She walked fast and long with me and was right back in the groove. Weight has totally maintained even with travel and lack of activity. She was hysterical in the car keeping us all laughing the entire way to Atlanta.

Second Grade Update

Wow I am overdue with an update.

First up school. Second grade is hard. Well, mostly it just doesn't leave time to settle in and get used to things before the academics really kicked in. Ayden Jane's little head is spinning with how, where, when, who, order of events in her day, new friends, new schedules, new....

I have to say she is handling it all quite well - better than expected as usual. When will I learn.

Her reading is her strong suit. Not that she is way ahead so much as she is on target and it is not hard or draining for her. Her comprehension is good and she just plain likes to read. Of course, handwriting plagues her still but she is working on it. Math has also stepped up a notch in second grade from first.

She really struggled at first with the math and started to concern her teacher. She tends to panic a bit when she doesn't understand something. Her teacher, Mrs. R, has been awesome... she pushes her through with encouragement and doesn't mind the mini meltdown. I have told Mrs. R to set the bar high and Ayden Jane will work harder than any second grader you've ever met to reach it. So far that has held true.

It is interesting with Ayden Jane. She trusts people who push her. I think she just knows somehow that people who expect a lot and push her to do things are pushing because they believe in her. She actually doesn't trust people who go too easy on her. She doesn't really like when people are too quick to help her. She gets very stressed in these settings and upset that they "don't think she can do it."

I will say, over all, Ayden Jane is learning to be a little less tuned into what others are thinking or searching for the hidden meaning in every word, expression or movement. It think as she learns to read things like tone and expression a little better she worries less about them. It struck me the other night that she hasn't questioned me about my expression lately. You know, "are you mad? Why do your eyes look like that? What are you thinking? Are you happy?..."

Shoes/yellows update tomorrow.  

Second Grade!!

Not the greatest picture but here she is. She is all set for second grade!! New backpack, new lunch box, new glasses, and of course, new shoes - without 'yellows!"

Ayden Jane had a great first couple of days. As I type, she is sacked out on the sofa because going back to school was exhausting! It will be a challenge to have school, after school activities, homework and time to play with her friends!

As far as school goes, she is in a regular second grade classroom. She will be pulled out to work on OT skills but other than that she is typical second grader. She does have an IEP, primarily so that she can receive OT, but also as a back up plan for her deficit - writing skills.

The plan with her teacher now is to just expect her to put in the extra work and effort to do all the same work as the other kids. At the same time, on things like homework, I can alter assignments a bit because, let's be honest, she NEEDS to do the activities like swim team and horses ect. So the plan is that we need to turn in homework every night but on things like - write a sentence with each spelling word, I can sometimes let her dictate some of them. Or when she needs to write her spelling words 3x's each, she can do some of the practice in shaving cream and I can just note the paper she turns in. We will see how it goes.

Ayden Jane has a friend sitting next to her. He is a boy she has known a long time and is super comfortable with (sort of like a brother or cousin type friendship). She doesn't need a lot of help, but gets frustrated when she can't open things or flip through things fast enough to keep up. She has informed me she really likes sitting by C. I guess it is always good to know the kid next to you has your back.

Her class has 10 boys and 7 girls and she goes to recess with a few of her friends from last year. All in all, I'd say she is ready for a great year and to meet some high expectations. I figure I might as well expect her to meet the high expectations because if I don't she will just surprise me.

She is Different

This post is one of those that is rattling around in my head. Parts of it are clear and parts of it make me feel awkward. Here we go anyway.

A couple days ago I was at Shriner's Hospital for Children with Ayden Jane for her scoliosis check. It was awesome. Her curve is measuring 8 degrees but the doc was very impressed with the progression of Ayden Jane's x-rays (honestly, he lost me in that conversation).  He was very surprised by her tone and improvement in her core. He asked what we have been doing and Ayden Jane piped up that she works hard with Mrs. Jen to keep her body strong and straight. I told him she swims, rides horses and we have added running. He was very interested in the story of how things started after the winter she lost her tone and the right leg seeming to be the key. I think he and Jen would have a great conversation about it all.

What really surprised me was after we finished the orthopedic talk, he asked me, "What else are you doing because I have had many patients with Prader-Willi Syndrome over the years and she is different." It took me back a bit for a minute. Usually, I hear she is doing great and is on the mild end of the spectrum....  His simple statement and later expansion to include, "she is not just mild PWS, there is nothing about her that presents as PWS. She is different."

That phrase just keeps rolling around in my head. It still jolts me a little. I mean, I know Ayden Jane is doing fabulously right now but to me, she is just a kid who has worked hard but still fights PWS. It makes me thrilled to hear and at the same time breaks my heart for others. I mean, if she is different - then how do others shift from PWS to different. I mean if she is mild, then others can sort of slide down the spectrum and join her. What does it mean if she is different? Is there a track to jump? How exactly did we make the leap?

It was fabulous confirmation of all we have done over the years. Sometimes I wonder if the time and effort and financial sacrifice of staying home to sort all of this out over the years was worth it. I start to get on myself about how I should really have been able to find some sort of work to fit in with it all to ease the pressures. In the end, I know that God has His hand all over this. I pray for wisdom as I tweak things with AJ and as I attempt to help families who are a few years behind us on this path. I pray that God will use us as He sees fit and I am doing my best to trust Him to guide our next step.

She is different. It will echo with me for a while as I try to understand the full extent of that simple statement.