Saturday, December 29, 2012

Merry Christmas

A great Christmas morning.  All we were missing were Grandma and Grandpa.  The usual routine is to wait until Grandma and Grandpa arrive to open all the gifts.  The kids are so used to having to wait they don't even bother to get out of bed early.  Well, except for AJ.  Once we got the go ahead that it was just us we sent AJ in to wake up the big kids.

I have more pictures to download, but here is one of each of them for now.  Mckenna enjoying her stocking.


Next up is Ayden Jane excited about her new stuffed giraffe!  We successfully talked her down from the real one.  Woo Hoo!


Kayla some how avoided most of the pictures...


Noah enjoying the view as the younger kids were opening presents.


Noah helping AJ figure out one of her presents.


Our day continues at grandmas house with more presents and more food....  Ayden Jane has continued to discuss Christmas and always comes to the same conclusion....  "I love Christmas"


Thursday, December 27, 2012

Fall Fun

I went to download Christmas pictures for the blog.  I ran across these that Mckenna took a few weeks before Christmas in our front yard.  We raked a big pile of leaves and the two of them had a great time.





                           

Sunday, December 23, 2012

The Mind of a 5 Year Old

Age 5 is an amazing time in the mind of a child. I remember it being a time of deep questions with all the kids.  Sort of like their minds and hearts deepen, but their literal brains just cannot quite categorize it all.  One of my favorite Noah stories came when he was 5.

Riding in the back of the car he asked me, "Mom, why do we have to bow our heads when we pray?"  I was not totally engaged so I threw out the standard, "it is a sign of respect."  Then he sounded a bit distressed and said, "but I don't want to bow my head when I pray.  Do I HAVE to?"  I answered him with a question.  Why don't you want to bow your head?  His answer: "I hate looking at the devil when I am talking to God."  It came out with such emotion like it had been a struggle for a long time.  I loved it.  The literal side of being 5 mixed with the important and deeper side of growing up.

Ayden Jane has been coming up with some of these lately as well.  Here are a couple.

AJ: Is God big or small?
Me:  What do you mean?
AJ:  Well, He has to be small to be inside my heart, but He has to be big to be everywhere.  So is He big or small?

How did Jesus save us when he was a baby?  Babies can't do anything!

Sadly, the other thing Ayden Jane and Noah have in common is night mares.  Noah had trouble with recurring ones that would last a couple of weeks.  There was no sleeping those couple of weeks....  Ayden Jane's don't seem to be as bad, but she has started telling her brain not to have bad dreams and asking us to help her ask Jesus for good dreams.  You can tell she is genuinely frightened.  It was hard when Noah was little to watch him be honestly afraid to sleep and it is no better now.  Just one of those things a parent cannot fix.

Saturday, December 22, 2012

Christmas List

Ayden Jane is really enjoying the excitement of Christmas coming.  She is not driving us too crazy, but is just like any other 5 year old with no schedule, a house full of craziness and Christmas on the horizon.  Yikes!

Mckenna sat with Ayden Jane and they worked on her Christmas list.  Mostly because all Mom could come up with were great therapy ideas!  Here are her top 3.  Big kid roller skates.  Hmmm.  She still has no confidence on the plastic 4 wheel kiddie skates and she wants inline skates like the other kids.  Santa will comply, but I am thinking we will spend a lot more time putting them on and taking them off then anything else...

Next?  A real giraffe.  Yep, you read that right.  A REAL giraffe.  It will be too big for her bed but can fit in mine...  Well, at least until we build it a fence in the back yard.  Ummm.  We have been talking it down so hoping that we will have her backed off to a stuffed on by the big day because that's whats coming!

On the stuffed animal note I have say, it was ridiculous how hard it was to find stuffed animals.  I could find cute baby ones in the infant section, but that was it.  I was the proud owner of a stuffed animal collection and all my kids had a few.  Well, except Mckenna who has a TON.  Anyway, they are just not carried around here anymore.  I remember when I went in Toys R Us and there was a huge wall of them.  Now, a small corner with few.  Of course the electronics section is enormous....  It all just struck me as sort of sad.  There is a small toy shop that still carries lots of them.  It is a long drive but I found the giraffe and was sure to tell them they saved my day.

As for Gary and I, our Christmas list was made yesterday and not by us.  Sewer pipe clean out by the plumber, a new oven (being blessed with a used one) and new brakes and assorted car repairs.  All decided we needed them yesterday.

Tuesday, December 18, 2012

AJ Quotes

Kayla is home for Christmas break and she and Ayden Jane have talked a lot.  Kayla is great at remembering the crazy things AJ comes up with in a day so here are a few she remembered when I asked tonight.

AJ:  Kayla, what do you call those people we don't know?
Kayla: We call them strangers
AJ: Why do we call them that?  They are not strange?
Kayla:  It's because we don't know them.
AJ:  I can fix that, I can get rid of the strange by asking them their names...


In church they were lighting the Advent candles.  Ayden Jane asked Kayla why they were lighting candles.  Kayla told her because it was Advent.  Ayden Jane then asked if it was Advent's birthday.


I gave AJ a snack before bed and sent her on her way saying, and don't ask for anything else.  As she got to the living room she said to Gary, "Dad, you know peanut butter really sticks to my cheeks.  I would greatly appreciate it if you could get me some tea."


Mckenna accidentally stepped on one of our dogs.  She told the dog, sorry Sadie I didn't see you there.  AJ chimed in with, "well then Mckenna you must need glasses."



My Monkey

video

Today Ayden Jane and Mrs. Jen did therapy at a local playground.  I missed the start on the video, but AJ started on the ladder and got herself going.  She was so proud to be able to do the side ways monkey bars!!!

Thursday, December 13, 2012

More on PharmaNAC

PharmaNAC has been wonderful for Ayden Jane in many ways.  I KNOW that our results are not typical.  That seems to be a recurring theme for AJ...

Here are the good results.  Clear upper respiratory system.  Ayden Jane did get a bit of a cold, like Mckenna, but it was cleared out in a couple of days.  No extended goo, no infection.  Nothing short of miraculous.

The big surprise, however, is that it is causing her brain and mouth to be much more connected.  Basically, AJ has great verbal skills, but when trying to express complex ideas or when a lot is going on around her or she is just surrounded by new people/places she struggles to get those ideas out.  It is not a true stutter, but that is generally what we call it.  Basically she repeats the first few words of the sentence a few times while her brain is working on the second part.  Then throw in some basic pauses and the end result is that it requires a LOT of patience from the listener and determination from Ayden Jane.   After about a week of taking the NAC, I realized that she hadn't "stuttered."  I am not really sure when it stopped because it was noticing something was NOT happening...  I asked Gary and he said he could not think of one time either...

It is like the thoughts in her head now just come flowing out with ease.  Here is an example over breakfast.  Just imagine that there is only a split second pause after each question where you cannot possibly get in an answer!

Was Santa born? If he was who are his parents? If he wasn't born does that mean he was made? Did God make Santa? Why did God make Santa? So we could get presents? How old is Santa? What about the elves? Did God make them or did Santa make them? How old are they? Do Santa and the elves ever die? If they die what will happen to Christmas? Can the elves talk? If they can talk, why does Fiddlesticks (our elf on the shelf) not talk to us? Is it that he can't or because Santa told him not to? Why doesn't Santa want him to talk to us? Is Santa afraid Fiddlesticks will accidentally tell us his secrets? You know, Santa lives at the North Pole. So do polar bears. How do polar bears keep warm when they swim in the cold ocean? That's just crazy! We have a bear cave at school. How many types of bears are there in the world? How come bears look so different but are all bears? ...

And it goes on forever....  It is amazing.

Now the down side (why does there always have to be a downside?).  PharmaNAC was tearing up her belly.  Ayden Jane did not complain, but you could see that her belly was bloated and, pardon the bathroom discussion, but her poop turned to pudding.  I thought that the side effect may diminish over time but it continued to gradually get worse and I was beginning to worry she was going to have problems at school.  I told her teacher of the problem and assured her that it was the result of something we were giving her to help her.  The teacher's response shocked me.  "Is that why she is so much quicker to answer and is able to transition so much easier now?"  Ummm.  I guess so!

Well, with no hope for improvement in sight I decided to try giving her PharmaNAC every other day.  The evening after skipping a dose we were at horses.  Ayden Jane was trying to retell a story and she just got so stuck.  It kept wanting to come out backwards and she kept repeating parts of sentences.  I was getting frustrated and then it hit me.  This was our normal just a few weeks ago!  I just couldn't go back!!!

Faced with the choice of torn up gut or dis fluency in speaking I had to find a different solution.  (By the way, the break took care of the gut)  Dr. Miller was concerned that if I opened the package and used half a tab that the other half may not be useful the next day.  I just was not up for throwing away half a dose a day.  This stuff is expensive!!  She gave me the mission of contacting the company.

Victory!!  The effervescent tab that they make is more stable than powders or powder in capsules.  It was suggested that I snap it in half and save the other 1/2 in the packaging and/or saran wrap.  Basically, they said that it may lose some of it's potency to oxidation but it should be minimal in 12-24 hours.

So, we are currently using 1/2 a tab daily and things are flowing at appropriate rates from both ends :)  (I just couldn't resist)

Sunday, December 9, 2012

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.  

Saturday, December 8, 2012

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.


Thursday, December 6, 2012

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.

Tuesday, December 4, 2012

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!

Saturday, December 1, 2012

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.)