Fun

Noah and I were talking on the way home from some errands we ran after church today.  No particular, deep conversation or anything but he reminded me of something I know already, but need to hear sometimes.

Ayden Jane was in the back and was lobbying for it to be never-take-a-nap day.  (she lobbies for this most days!)  She is close to being ready to give up the nap, but she just functions much better with it and, oddly, without the nap asks for food because she is tired.  It is just not a battle I enjoy so....

As a part of this debate I said that it would be nap time when we got home, but it was so pretty out that maybe she could skip the nap and play outside for a bit.  Ayden Jane responded by asking me if I'd like to play on the trampoline with her.  Hmmm.  Like to play on the trampoline with her.  Truth is, I would like for her to play on the trampoline while I got a few things done inside.  Then my mind jumps to some therapy things we are working on that we need to do on the trampoline.

I said something to Noah about not really feeling like playing with her blah, blah, blah... Then I asked him if he remembered all the hours he and I played basketball, threw footballs, kicked soccer balls...  with him.  He said he did.  I remembered it being so much fun.  Just silly, no goals to meet, no point to it, fun.  I confessed that I wished that at times I could turn off the inner therapist that I have developed and stop thinking about what muscles we are working or the position of her leg or if we played long enough ...  I would guess that the 10 to 12 years that have gone by since our one on one days in the driveway have made me a bit less enthusiastic.  (Yes, I am old... well for the parent of a 5 yr. old anyway)

Noah's response?  Something like, she is five and doing great.  You better just have fun with her now.  

High Maintenance

Ayden Jane is doing great.  She is hilarious, active and always up for adventure.  She is, however, high maintenance.

I mean, there are the high maintenance things she can't avoid like having to have certain foods and drinks available no matter where we are.  It seems though that the life of therapy, encouragement... basically center of attention stuff has also overly developed her demanding side.  I mean I get it.  She has how many adults who, in her mind, exist mainly to help her.  Okay, so that's an exaggeration, but you get the idea.

As for she and I?  Well, we spend a lot of time together and since the beginning of time (Ayden Jane time) most of that time revolved around therapy, food, care, getting exercise, working hard practicing skills...  Ayden Jane never really watched TV and I was sort of obsessed with using every spare second to the fullest of it's potential so....  The end result?  A fantastic little kid who is filled to the brim with confidence.  On the down side, a large dose of spoiled rotton.

I have a feeling that it is a pitfall nearly unavoidable with special needs kids.  They just need so much that they get a lot of attention.  Likely, in our case it is a bit worse since the big kids have there own things going on so Momma is playmate a lot.  Then when the big kids who are fabulous with Ayden Jane are around, she totally entertains them!  Yep, she plays the role of youngest quite well.

Good news is that this does not seem to transfer to school.  I have really enjoyed seeing Ayden Jane at school this year and watching her on the playground.  Sure, she needs some extra help sometimes, but so do most preschoolers.  As for problem solving and maneuvering through the jungle of the playground?  She is amazing.  She happily plays with whoever and has a couple of favorites.

Now if I can just figure out how to unspoil her!  It is hard though, because as angry as her stubborn nature makes me sometimes, her sense of humor and joy over the tiniest things melts my heart.

I Hope It Lasts

Ayden Jane considers herself as typical as the next kid.  That is awesome.  In fact, if you ask her, she will tell you that she is the fastest, smartest,... 5 year old there ever was. (she may have been told a few to many times how awesome she is)  That being said, she is sometimes a bit curious as to why she sees so many doctors and has Mrs. Jen, Mrs Stella, Mrs. Rogers and horses.  Then of course there is the whole food thing.

I don't hide discussion of Prader Willi Syndrome around her.  We talk pretty openly about it in our house, but she has not made the connection to herself.  It has been interesting to watch/listen to her sort things out.  Lately she has talked about how many doctors she has.  In the end she said, "Mom, I suuuure have a lot of doctors.  I must be super complicated."  So far she thinks it's pretty awesome to be complicated.  I hope that lasts.

Mostly, we just don't make a big deal out of all the stuff she has to do.  We sort of talk about it like all the appointments are just things on the calendar like basketball games, soccer games, music performances... Ayden Jane talks about her therapists by name like the other kids talk about their coaches ect.  Sometimes when our family is visiting with another, it probably sounds a little odd that it is all so casual but it works for us and Ayden Jane.

I love that AJ does not think of herself as having a syndrome or medical issue...  She is a 5 year old kid that has an important job to do:  Grow big and strong, learn all she can and have fun.  She knows she needs a little help from these people that love her and she leaves it at that.  Oh how I hope she can keep that attitude for a very long time.

Noah

Although Noah is still in the fall of his senior year he has felt a lot of pressure to decide what next year will bring.  It is/was a good sort of pressure.  The kind that has lots of options.  He is a soccer player.  Well, actually he is an awesome soccer player.  In fact, he is just a great athlete, but soccer is the game he has poured most of his time and talents into and the game he just loves to play.

Starting really last spring Noah has been receiving mail and email from colleges all over the map.  Some of them big schools some of them not, but all telling Noah how great their school is and why Noah would be a great fit for their soccer program.  It is good to be wanted, but it is still a tough decision.  All the while he has worked, played HS soccer and basketball, played travel soccer and done, well, most of his school work.  I'd say that's a lot for a 17 yr old boy.

So, after hearing from schools as far away as Xavier, Sienna and Goucher who have seen him play in tournaments; after visiting and meeting with countless coaches closer to home he has come to the conclusion that he will attend and play soccer for Coker College, about 2 1/2 hours from us here in SC.

We are proud of the choice he made.  He is choosing to go to a smaller school where he feels he will do well not only on the soccer fields but academically.  He is choosing a soccer program where the coach has a program built on integrity and expects his players to have great character on and off the field. Noah wants to enjoy playing college soccer and get an education that will prepare him for Law School.

Noah really liked Coker when he went and trained with them a long while back but we felt that he needed to explore the other options out there.  Having done that he has come to the decision that after every place he sees and every coach he speaks with, they just fall short of how comfortable and at home he felt at Coker.  Honestly, it is great to see the weight of the decision off his shoulders.  He is one happy kid!

Congrats to Noah, a Coker Cobra!

Philadelphia

What a trip!  Gary and I left around 1 pm on Wed. and headed north.  We knew we would get in late, but decided that getting the whole trip over was a great idea and we hoped that Ayden Jane would fall asleep and make the last few hours relatively painless.  We received most of what we hoped for.

Ayden Jane has not traveled a lot lately.  We did not even make it out of South Carolina before she was asking how much longer...  She eventually got in her groove playing with toys in the back and we were truly on our way.  The only challenge we faced was whenever we stopped, Ayden Jane wanted to get something to eat.  Now, we could turn that statement into a big PWS thing, but honestly, I think it was more about wanting to get to pick something and break a bit of road weary.  In fact, I know that all my kids loved getting some sort of treat from the gas station at this age!  Our solution?  Gum.  She went through a lot of it:)

We discovered that Ayden Jane does not go to bed well in a car!  She managed to stay up until about 10:30 in the car and let's just say that Gary and I did not find her last waking hour cute or amusing.  We did finally arrive at the hotel and she was WIRED!  Thankfully she did finally sleep and slept well.

We went up a day early because we knew that AJ needed to wiggle before heading back south.  We decided to go to the Please Touch Museum ( http://www.pleasetouchmuseum.org/ ).  It was AWESOME.  Ayden Jane played there for over 4 hours! She was at about the perfect age for it.  That night we walked about 15 blocks or so to Macy's and walked in just in time for a Christmas light show.  We saw the Christmas windows along the street... It was great.  AJ managed to walk back all but the last 5 blocks.  I think she likes the city.

Friday was Shriner's time.  They were awesome.  We found it, checked in and went from station to station.  Ayden Jane was great and, of course, has a new fan club.  The amazing thing is that when they took her x-ray, her curve has been cut in HALF!  It is now 12.5 degrees! Yep, we were on the edge of the cliff heading for casts or braces... and now we just have orders to keep up the great work and monitor her curve every 6 months!  What a difference 2 months can make.  He thought her orthotics were appropriate and agreed AJ definitely needs to stay in them.  He checked the internally rotating leg and said he also recommended that we stick with strengthening it and all the other things we are doing.

So a great trip with lots of keep up the great work from the Doc.  In a way it seems that it would be frustrating to go all that way for a pat on the back, but just knowing that we are totally in the system and that Dr. V will follow AJ through check up at Shriners in Greenville SC is worth it!  If things were to suddenly go bad for us, he will guide her care and will have followed her a good long while.  Worth every penny (and mile).

(I will work on getting some pictures up soon.)

Maybe One Day

I hope this comes out right, but as a disclaimer I want to say that this is in no way intended to sound angry.

I have heard 3 times in the past week alone, "God gave Ayden Jane to you because He knew you were just the right person..." or something like that.  Now, it is always meant as a compliment or at least a heart felt observation or something.  It is intended to be encouraging and supportive of the challenges we have overcome along side Ayden Jane.

I have heard such comments for so many years now and with so much time to mull it over, I believe this.  God chose our family from the beginning.  He knew that Gary and I would be blessed with 4 kids.  I do not believe that He ever intended for AJ to have PWS, but things happen.  Just like I don't believe that God chooses for people to have cancer or diabetes or Alzheimer's or any other such thing, but we live in an imperfect world. Would you say God chose your wife to have cancer because you are a good husband and you can help her through it?  God can use these awful things to bring about joys we would never be able to comprehend otherwise.  He can reveal Himself in marvelous ways in these circumstances if we allow Him to do so.

I was not chosen as AJ's mom because I am somehow special or better prepared or equipped.  If there were any logic to that then all special needs kids would be born to families who are somehow more capable than other families.  PWS, autism, down's... none of them care what the financial or educational status of the parent is.  Some families are able to withstand the strain of raising special needs kids some crumble under the added strain.  I am thrilled to say that we have withstood and in some ways become stronger as a family thanks to Ayden Jane having PWS.  We have been blessed by extended family and friends that have propped us up with prayer, encouragement and even finances when we just couldn't go it alone.

Honestly, I mostly struggle with anger that Ayden Jane has PWS.  So, often times this sentiment makes me angry.  Sort of like the reward of being a good parent with the first 3 is that our fourth has PWS.  I know, I know that is not what is meant when people say that God chose us...  I think the meaning is more along the lines that AJ is blessed to be in a family that is willing to work so hard for her.  In all honesty, watching your child struggle to do things that they should naturally, watching them daily manage a chronic life long disorder and all the while knowing that any day they may begin to feel hunger every minute of every day just makes me feel angry, not 'chosen' or blessed.  These are things I cannot fix so I often feel incapable... What parent feels adequate when their child has needs you cannot meet?

So what would I say to a friend whose child is born with PWS?  It sucks that baby has PWS but I promise you I am here for whatever you need. Then just listen.  We need to pour forth.  As the sting subsides:  I know it is rough and that neither you nor little one signed up for this but you are doing amazing.  Little One brings joy in ways I didn't know existed.  I hope you are as blessed by him as he is blessed by how much you love him.  If you don't feel that way today it's okay.  Some days you will and some days you won't.  It is a long sometimes lonely road raising a special needs kiddo but if you are able to take a moment to look around you will see God in many new ways.  You will learn what is important in life.

I hope that the day will come when I don't get angry that Ayden Jane has PWS.  That I don't get angry watching her struggle.  That I don't feel bitter about how hard it has been on our other kids.  That I stop wondering what AJ would be like without PWS.  Maybe, one day, I will be thankful for PWS.  

Pharma NAC

While at the conference we heard Dr. Miller talk about a supplement for low glutathione levels.  Yea, I have no clue what a glutathione level is either but apparently it is sort of important.  It is linked to obsessive/compulsive behaviors like hair pulling and skin picking in PWS.  I guess they have had some luck with it in helping to treat addictions as well.  Now, we are very happy that we do not deal with any of those things with Ayden Jane.

We also heard, however, that it is a supplement that is used in people with cystic fibrosis because it is somehow linked to inflammation of the airway.  It is also known to loosen and break up the gunk that resides in that tract.  All things that I would have paid dearly for last winter when Ayden Jane was such a mess. Because it helps immune function and respiratory system, it can break the cycle of repeated bacterial infection.  Again, where was this stuff last winter???

Ayden Jane just finished day 3.  So far I'd say I am hopeful.  When we returned from the conference Ayden Jane was a very gooey mess.  I am pretty sure that the cats at Mrs. J's were the culprits for clogging her all up, but her poor drainage ability was basically letting it all just sit there.  I'd say she has blown her nose successfully better than I ever remember since we started this stuff on day 1.  She is nearly silent when sleeping.  (Not that she snores a ton, but she definitely did when clogged up.)

I also think that there is an increase in her energy.  The first night she was up until 11 pm!!  Day 2 was marked by a long, involved wrestling session and the going-so-fast-she-kept-crashing-everything routine.  Day 3 she skipped a nap and kept energy going.  She is also choosing to more or less skip lunch!  The best part of that is she is doing so without the big lull in activity that has always come after being active a while and sort of running out of fuel.

Way too soon to say what part/if the Pharma NAC is responsible for the changes, but my gut says that it is, at the very least, reducing the inflammation in her sinuses and calming her immune system.  Sort of giving her a fighting chance of clearing things out.  In the process there may be a bit better respiration going on as it is just way easier to breathe!  I also think it is responsible for quieter sleep.  Even though AJ does not deal with it, I wonder if it would help with obstructive sleep apnea?  (google search shows a bit of hope it might)