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.)

Friday, November 23, 2012

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.  

Monday, November 19, 2012

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)

Sunday, November 18, 2012

Dr. V and Scoliosis

I have been round and round in my head about what to do with Ayden Jane and the scoliosis.  I was almost able to talk myself out of making the grueling trip to Philadelphia to see Dr. VanBosse because, well it's a grueling trip and AJ looks good on the outside.

After listening to Dr. V. at the conference, however, I know I want to take AJ to him.  He was very convincing in his knowledge of PWS.  Imagine, not having to feel the concern of whether or not the decisions made are the best way to treat a child with PWS.  Ayden Jane looks and acts nearly completely like a typical child so I think sometimes I must sound like a crazy person reminding them that she really is different on the inside.

He brought up several other common concerns in people with PWS.  Ayden Jane will get the complete once over and we will be able to determine a treatment plan for the scoliosis with all the best info.  Basically, her curve was measured at 23 degrees in Sept.  If it has progressed at ALL we will be looking at some sort of intervention.  It could be in the form of a brace or a cast.  Either way, we will have a plan and be moving forward.

As for the trip, we decided we will drive up (12 hrs) on Wed. and take Thurs. to play.  Thinking we may check out the zoo or the Please Touch Museum depending on the weather.  I just feel like AJ will need a day to wiggle so she can do her best on Friday.  Our appointment is at 9:15 but we were told to be prepared to be there all day.  Since we are checking on AJ's orthotics, have questions about her right leg and it's desire to internally rotate plus the scoliosis... I want AJ to be ready.  Then we will just head back and drive into the night Friday night.  At least that way AJ will hopefully sleep and not talk for 12 consecutive hours!

Thursday, November 15, 2012

Unfair

This post has nothing to do with PWS, but it is something that is so touching my heart and our family...

Yesterday, the 4th father of one of my kids friends passed away.  Four great, strong marriages.  Four couples who were best friends and loved being close families.  Four families that have now felt a similar loss. One I cannot comprehend.  Three of them in the past year alone.

All of the children were that indeed, still children.  Ages 3, 10, 11 and 11.

I know that PWS has made our families journey tougher than average, but I cannot imagine raising any of the kids without Gary.  It would be the loss of my best friend, my rock, some days - my sanity.  It would be the loss of 1/2 of who my kids are and 1/2 of their compass for who they will become. I can't imagine handling the challenges or for that matter, not having him there to share the joys.

My kids are keenly aware that life ends.  It has not struck them personally yet as they still have all 4 grandparents... but they have walked this road with their friends.

So, if you have a minute, say a prayer for these families.  For the amazing women who are moving forward the best they know how.  For young children who have to grow up a bit quicker than they should.  For those of us who want to support them, may we know how to truly be helpful.


Wednesday, November 14, 2012

FPWR Conference - The Home Front

Noah did an awesome job of taking care of his little sisters so we could head out to the conference.  I have heard a few stories that show he is a bit of a genius when it comes to managing life with Ayden Jane.  Here's one example:

Ayden Jane was sooooo excited that Noah was going to take her to Harby's  (Arby's)  When we travel for soccer it is Noah's favorite place therefore AJ likes it too.  While they were there Ayden Jane was so excited about it being Noah day.and having gone to basketball practice with him... that she was rather distracted.   Apparently when they were eating she was taking FOREVER and Noah was ready to move on.  Ayden Jane did not want to hear about taking the rest of her apples in the car...  What is one to do?  It's not worth a melt down to force this issue.  So,  Noah was messing with his phone and told Ayden Jane that Tucker texted him and really wanted them to come home fast and give him a treat.  Ummm.  Tucker is the dog.  Ayden Jane loves Tucker and it is her job to feed, water and treat him.  She bought it in a flash!  Now, I'm not saying lying to his little sister should be a consistent habit, but I think the genius of the maneuver out weighs the method.

The morning after Noah day, Ayden Jane was off to Mrs. J's house.  All reports were good and that AJ had a great time and was really easy on Sat.  One problem was sleeping,  Well, more like lack of sleeping...  Apparently AJ woke up at 1 AM and went in and asked Mrs. J, "what time can I get up."  J told her 6.  Back she went at 2 AM and said, "Is it 6 yet?" Repeat pretty much every hour to half hour until 6...  Somehow Ayden Jane hung in there though and made it through church and a soccer game (playground time) and had a great time.  I am so thankful for people like Mrs. J who willingly take on the challenge of Ayden Jane...

Noah put Ayden Jane to bed on Sunday night and we returned before she woke up.  It was so very cute Monday morning how excited she was to see us :) 

Tuesday, November 13, 2012

FPWR Conference

I have recovered from the trip and feel like daily I remember more and more details of what we heard.  The information was amazing and my brain has not been stretched like that in a while.  I just don't hear a whole lot of neuro biology or genetics at preschool.  If you want to read some great notes from the conference, just check out diving into the waves.  Ali took great notes.

It was great to catch up with old friends and make new ones.  What has struck me most about the experience this year is how different my perspective was.  The first conference we attended was when Ayden Jane was 1.  She had been diagnosed not long before and we still had so much to learn!  We were still coming to grips with what parenting Ayden Jane would be like long term.  We had our big long list of scary things that were supposed to come along with PWS.  We weren't sure how people could manage and have families and jobs...

I remember watching the families with older kids and looking at them and thinking that they seemed okay.  Even happy.  They figured it out.  Also the kids each had their own challenges, but none of them had to deal with ALL the possible challenges.  I was pretty sure I could handle that.

We went back the following year and learned a lot as well.  We still felt like much the newbies in the grand scheme of things.  We had a great time seeing many of the same folks at conference # 2 and reuniting.

Well, 3 years has passed since we made it to a conference.  I am no longer 'scared' by the possible challenges on the horizon.  I have heard about them all.  We have become one of the families that is happy and intact and has 'figured it out'.  I don't mean figured out PWS, but have found how to continue on with full, happy lives with a side note of  PWS.  We spent little time with old friends and instead enjoyed making new friends. We were renewed with hope as we listened to intelligent, passionate and compassionate scientists discuss the work they are doing to brighten future of our child.  The research has advanced incredibly since that first conference.  So much more is understood which has led to a crazy number of new ideas to explore.

So what stands in the way of Ayden Jane's future?  Well, nothing really.  Her future is bright because she is an amazing person.  However, at this point her future will likely come with some pretty big obstacles and struggles.  Prader Willi Syndrome is a part of her every minute from the moment she was born to end of her days.  I think that is where it is hard for me.  I hate the thought that my amazing child will carry a daily battle with PWS all the days of her life.  The research ongoing and funded by FPWR is providing incredible hope that one day Ayden Jane's daily battle may simply be a skirmish.  That will be the day our prayers are answered.

Thursday, November 8, 2012

One More Day!!!

Yes, in one more day Gary and I will be checking out of Pawleys Island and heading north to the FPWR conference.  You heard that right!  Both Gary AND I will be leaving with NO, that's ZERO children.

Sadly, I cannot remember the last time that Gary and I spent a night at home childless let alone EVER went out of state childless since Kayla was born.  (yep, 19 years!)  You'd think that I was heading to Hawaii or something, but getting to head off to the conference is jackpot enough for us.

Now, prepping to pull off this very feat is a bit challenging.  The plan is for Noah to take care of the girls Friday/Friday night then pass AJ off to the infamous Mrs. J (Ayden Jane's preschool teacher from last year.  I told you St. Peter's is awesome!!) for Sat. and much of Sun.  Then Noah will pick her up, bring her back home for the evening and put her to bed here.

Okay, that is the basics of the logistics.  Then there is packing food for Ayden Jane, supplements (deciding which ones do deal with) training Noah to handle her shot and just general AJ stuff.  You'd think I would be nervous, but Noah is totally up for the challenge and Mrs. J knows AJ well.  We are just gonna plan our best and head out!

Thursday, November 1, 2012

Happy Halloween


Another Halloween down.  I have never really been a big fan of Halloween but it definitely can be a source of stress when you add in PWS.  Ayden Jane, however, proved to be amazing.  She loved trick or treating and went for a good long time walking/running from house to house.  She collected quite a haul!

After she was tired of all the walking we returned to a friends house and she enjoyed the costumes that came to the door and REALLY enjoyed playing with our friends dog.  Not once did AJ ask for a piece of candy or anything else to eat for that matter.  It was pretty amazing.

She was exhausted at the end of it all and went to bed.  In the morning all her candy was taken by "the Great Pumpkin"  (or as she sometimes called him, Mr. Pumpkin) and a wrapped package lay waiting.  Ayden Jane got a really cool new toy called a pogo jumper.  She bounced all day long today and even took it to the volleyball game tonight.  She bounced her way around the gym and just knew it was the greatest way to cheer.

This kid cracks me up.

Perspective

As most of you know, we have a total of 4 children.  To some people this seems like a LOT of kids.  I have to be honest that it doesn't seem like such a large number to me (although on a bad day, I have been known to think otherwise).

It is just fascinating to see the similarities and differences between the kids.  It is awesome to watch them together and enjoy watching them grow.  I wish sometimes we could just scoop them all up and head off on a secluded vacation and just enjoy them and hang out as a family.

The real point of this post though, is our unique situation of having kids at such different stages.  On one hand, it is really cool to be able to see 'the whole picture' all at once.  I know, it's not like we really have the WHOLE picture, we don't have infants or adult kids with grand kids or anything...  But we do span preschool to college!  That's plenty.

It has given me great perspective with the younger ones. I remember my first time through preschool and how huge and important things seemed.  Now they seem important in different ways and I look more for ways to enjoy them.  That is partly because Ayden Jane is different and I just jump up and down with joy for achievements that place her as average, but still... As Mckenna is on the edge of heading toward middle and high school and those years of pressure I hope to help her have great perspective on what is important.  Simply put, God.  She has talent galore, brilliance, beauty and a sweet spirit.  The key to finding her way and  and growing up happily is to know God and allow Him to guide the use of such talent.  It is so easy to get caught up in our kids talents and abilities, but for our family, staying rooted in faith makes them confident, content kids. When they begin to trust in their own abilities it begins to get rocky...

I don't say this as a parent who has already done everything right.  (like there are any of those!)  But being able to look back and see what has worked and where we went off course.  All the rocky patches are rooted in finding value in what the kids could DO not who they ARE.  Often times because they found their own value based on their accomplishments and then discovered that sometimes others were smarter, faster, stronger, more talented...  Then what?  It is easy to do this as parent as well.  We are proud of their successes and sometimes it seems like that is why we love them or are proud of them.

The best 2 solutions possible for this pitfall are experience and Ayden Jane.  Experience, because we learn from mistakes...  Ayden Jane because we all love Ayden Jane for who she is.  We admire her determination and know she is valuable.  I mean know beyond a shadow of a doubt that she is awesome and has a purpose.  She sucks in all the positive vibe and is just happy to be who she is.

Yep.  If I could go back and do it all over again with my other 3, I would do my best to build them up and cheer on their every tiny step.  I'd drop everything and tell them how awesome they are for no reason at all other than because God made them just like they are with unique, amazing personalities and gifts.

Good night all.  I have some kids to find ..

Thursday, October 25, 2012

Playground or Jungle

I have the privileged of 'working' at Ayden Jane's preschool.  It is fun to get to know all the kids and see Ayden Jane in her environment.  I am not in the classroom much, partly because I think I would be a distraction for AJ and partly because it just hasn't happened.

I do see AJ a lot on the playground.  She has sort of evolved in her playground skills over the years at St. Peter's.  In the 2's I am not really sure what she did.  I know she figured out how to pump a swing and she liked to slide, but I have no idea if she really used those skills much at school.  In the 3's it became evident that AJ was way better at talking to the teachers than playing with her peers.  She spent much of her playground time standing around the teachers and talking to them.  She just didn't really know how to play with the other kids... Now that she is in the 4's, it has been awesome to see her playing.  No more teacher stalking.

This leads me to the real reason for this post.  We all know that the preschool years and for a long time to come, the playground is a bit of a jungle.  Kids are sorting out how to play together, the give and take involved.  They are also learning about a 'social ladder' of sorts.  They likely can't explain any of this, but you sort of see a survival of the fittest unfold.

The other day I saw AJ and stopped to say hi.  She was playing in a tunnel of the playground equipment, just sort of talking to herself.  I asked her if she wanted to play with ____ just to see what she would say.  Her answer surprised me.  She said, "I can't play with her.  She and ____ told me I can't play with them."  Now the mama bear in me wanted to drop kid those cute little girls, but I know that Ayden Jane needs to learn to stand up for herself.  I told her that she could play with them and to ask again if she wanted to play.  To tell them that they could all play together.  I wandered over to her teacher and told her what was up and just as we looked over to see how it was going, AJ was asking to play.  Her question was received by the answer no and a shove.

Yes, her teacher called the girls over and handled it.  After that all 3 went off together ready to play.  Well, until the kindergartners came out and a boy called for AJ to come play with him.  She ditched the little girls in a flash!

As I thought about the experience later in the day, I realized that Ayden Jane displayed an amazing self confidence.  Honestly, probably better than my other girls would have.  When told no by her friends (well one of the girls is a friend) AJ was not crushed or angry. She did not wonder what was wrong with herself.  She did not try to win their approval.  She simply went off to find something else to do.  When given the opportunity to forgive, she did so quickly and was happy to play with the girls with no hesitation.

Ayden Jane showed me that she is happy with who she is and that her self confidence and self worth is not based on anyone else.  What more could I ask.  I think they may be the best skills possible to survive the jungle.  (I mean playground)

Monday, October 22, 2012

Reading

I have a series of books that I have used with all of our kids.  They are called Bob Books and the approach to reading is so simple it is brilliant.  (like most great ideas)  The first book in the series introduces the letters M, A, T and S.  The entire book is written with these 4 letters.  The pictures are very simple which I have found helps to keep the kids focused on the words.  The next book introduces a couple new letters... and so on.  Voila!  A totally phonics based book series that is a great, fun way to learn to read phonetically without doing any worksheets, flash cards...

Now, this is not just an ad for the books.  Ayden Jane just turned 5 a few weeks ago.  She does not go to Kindergarten until next fall so I am not really in a rush to get her reading, but I noticed that she is getting pretty good with the sounds of letters.  I have had the first set of books around for a while for her just to look at and get used to.  Tonight I asked her if she wanted to read a book to me before I read to her.  She was game.

She told me what sound all 4 letters make without hesitation.  I told her to use the sounds of each letter, not the names to figure out what the words are.  It was painfully slow as she named the sounds for Mat,  mmmmmmm....... aaaaaaaaa...... tttttttttttttt. and it took a minute for her to get the hang of running them together to 'hear' the word they make.  She got it though!  I thought she might phase out as even though the book is short, it must seem long when working that hard.

So many things were going through my mind.  Memories of Kayla at age 4 determined to master the books and so focused that I nearly begged her to stop!  Memories of Kayla and Noah curled up in the top bunk as Kayla helped Noah read the very same books.  Memories of Mckenna being so proud of reading a whole book just like Kayla and Noah could do.

At the same time there was something so amazing about Ayden Jane still being a year away from Kindergarten sounding out the very same books.  The part of raising Ayden Jane that is special needs parenting is exhausting at times.  She is just high maintenance and it always feels like even little things can make or break her entire future.  (I know perspective will hopefully lessen that feeling)

On the flip side though, the little accomplishments create such and immense joy!  The sort that is a mixture of pride, happiness, celebration and relief all rolled into one.  I do my best to revel in these moments.  To take comfort in these moments.  To do my very best to remember all the emotion and joy and use it to carry me through the next challenge...

Friday, October 19, 2012

I'm Not Really Hungry

I NEVER get tired of hearing Ayden Jane say the words, "I'm not really hungry."  Yep, that's right.  I am still hearing these words often these days.

Last night after a full day of school and then soccer practice and playing on the playground I asked AJ if she wanted to swing by Chik fi a.  I know... not a good choice to offer such things to my sweet little PWS child, but she had eaten a hard boiled egg, cheese stick and a few grapes for lunch at noon.  Then some nuts at 4:30.  It was now 7:30 and it was a half hour ride home.  Any kid should have been starving!

At first Ayden Jane said, "that would be great!"  I fully expected that answer...  Then a few minutes down the road she said,  "Mom, can we just go home and have some nuts or something?  I'm not really hungry."

No, I did not end up swerving off the road.  I did, however, pretend I didn't hear her and asked her to repeat it just so I could hear her say it again  :)

Wednesday, October 17, 2012

The Other Shoe

Ayden Jane is still doing so great.  She is not concerned much with food, doing great in school, hilarious around the house...

So, the big question is why am I so stressed when it comes to her right now?  I feel like I am constantly waiting for 'the other shoe to drop' so to speak.  I guess last winter took us in the wrong direction and I felt the reality of how quickly things can go awry that I can't help but to worry about it.

Sometimes I feel like I am in such a no man's land with Ayden Jane.  I technically am the parent of a special needs child, but to most people AJ is not a special needs child.  Sometimes it is hard when hanging around with other parents and their little ones and watching how easily things come for them.  How the assumption is just there that their child will read, write and do all things in school successfully.  That they will have friends and play sports or be in the band...  All the typical ideas and dreams parents have of their kids.

I really have no reason not to picture all those wonderful things for Ayden Jane as well, but I feel afraid to do so.  I guess it is a way of guarding my heart.  Five years ago when she was born we feared the worst.  As each day passed, she improved and tests for horrible things came back negative.  We began to allow ourselves to picture her life as all good...  Then things changed and we met Prader Willi.  We were told things that made the beautiful picture in our minds of her life darken.

We did not allow that to slow us down or stop us and we learned not to believe in a diagnosis, but to believe in Ayden Jane.  She showed us daily that she could handle any challenge head on and she proved quickly that she was Ayden Jane, an individual who would not be defined by a diagnosis.

Last winter was hard and we sort of met the Prader Willi that is lurking in there.  For whatever reason infection/illness lets it run rampant.  We learned first hand that food seeking, hunger and behavior issues with PWS are hard to live with.  Then this Sept. we received glasses and a diagnosis of scoliosis.  More evidence that Prader Willi is always there and pops up at a moments notice.

Even as I reread the thoughts I just wrote I see and feel the tug-o-war inside of me.  I totally believe in Ayden Jane because she has made me a believer but I struggle to trust she and I will be able to continue to conquer all the challenges.

It is a cycle we all parents with PWS (and likely lots of others) deal with.  New challenge like scoliosis - knocks the wind out of you - you panic a bit - you rally your troops - you make a plan - you dive in and refuse to allow it to win....  You begin to think maybe all is good, but you are still a little scared. 

Friday, October 12, 2012

Slow Down

I did not think it was possible for life to get busier.  Alas, it has...

Kayla has made it home a second time, this time for fall break.  Thought we were going to have to make the trip to Clemson to transport her, but a friend lent her their car for the low, low price of a trip to the airport.  Awesome!!

Noah is continuing through his senior year.  His life is a bit of a blur between school, work, college searching, training hard, going to colleges to train with teams and check out school... On the side he is an amazing brother to his little sisters and helps me out when he can.  Even though I don't rely on him often, I do rely on the fact that I can always count on him.

Mckenna has become our all around kid.  Currently she is taking art classes, playing soccer, singing in choir, involved in church youth.... pretty much everything she can possibly fit in.

Ayden Jane is getting pretty good at handling her full week of school, therapies and a soccer team of her own.  Not to mention being the classic younger sibling who goes to all the big kids games....  Luckily she loves to be on the go.  It is tough when she crashes though!  No middle ground with this kid.  Generally she is happy and nutty but when it turns, she is miserable and grouchy.

Just as an example of a couple days in the life of AJ.  Wed. she had OT, school, PT and then went to a pee wee football game MJ wanted to see then to take the dogs for a walk with Gary.  Thursday she had school and an evening soccer practice followed by an extra 45 min. on the playground.  Friday was school, the homecoming parade and the homecoming football game.  (Bed at 10)  Sat. she had a soccer game at 9, Mckenna a game at 11 and 4.  It just never stops.

I guess I would love it all if it would just slow down a bit and let us enjoy the ride...

Monday, October 8, 2012

Wow

Wow is all I can say about the past few days. Well, going on a week now.

We switched to Augmentin to clear out the nasty bacterial infection and it won.  Totally won.  All green goo gone, sleeping well, reasonable and rational behavior (for a 5 yr old) ... I almost forgot how much fun this kid is!!

Then has come the strangest thing of all.  She is totally unconcerned about food.  She has turned down/put off meals and snacks.  She can suddenly go a long time between meals/snacks with no problem.

Let me attempt to put this into perspective.  When ill with infection Ayden Jane struggles with PWS in ways that many kids struggle on a daily basis.  The biggest of these is food.  She is hungry, a lot.  She cannot walk past food without it calling to her and convincing her she should have something.  She may even sneak food because she just cannot resist.  She will ask for things she does not typically eat and be really hopeful that today the answer will be yes.

On the amoxicillin when the infection was calmed but still surviving somewhat, AJ was better.  She would not ever turn down food but was not preoccupied with it.  You could see her feel the pang of wanting something when others were eating or she saw something, but she could handle a reminder that she had just finished hers...  and move on.

The past week after (In my opinion) the Augmentin finally killed the infection totally, food is a total non issue. If you have a child with PWS, you know how remarkable this phrase is.  Ayden Jane has turned down food in order to go play.  I will give Saturday as an example of how extreme I am talking.  We had breakfast around 8:30.  At 10:30 we headed out of town to Mckenna's soccer tournament 3 hours away.  AJ asked if I would pack a snack of nuts for her.  I figured she would eat them as soon as we got in the car because that is typical.  Bringing snacks can be tricky.  Often I need to bring them because I need to be sure there is something she can eat, but when she knows I have them and gets bored, she wants to eat them all.  She told me just to put them in the cooler in the back because she didn't need them.  Jaw drop.

About 1:30 we stopped about a mile from the field to potty and get some water.  Ayden Jane has still not touched her snack!  I saw bananas and decided to see what she would do.  AJ LOVES bananas and they are a big treat.  We got one and she offered me half.  I was again stunned.  We got to the field and with no lunch and only a 1/2 of a banana since 8:30 she asked if she could go play on the playground before she had her snack!!! She did finally eat her small snack of nuts at 2:30.

We had dinner about 5:30 and there was no whining or concern or asking for food.  Nothing after supper and no mention of it.  Yep. That's the way its been for about a week now.

Times like these I just wish I could see inside of that little body.  Such a dramatic difference in just a couple weeks.  What is working so smoothly now that wasn't before??  How do I keep it going??  How could it help other kids with PWS???

Wednesday, October 3, 2012

Fine Motor


I know that to the average person this does not look like much.  I have to say, however, to me it is the most beautiful picture EVER.  Ayden Jane drew it and as she drew she explained what she was drawing to me.  I took the picture sideways so you have to tilt your head so that the straight line is the bottom.

"This is the mouth, these are eyes, this is the nose, this is a forehead, this is the head, this is the hair and these are legs."

I can honestly say that this is Ayden Jane very first attempt to truly draw something.  Most of the time she just scribbles and moves on.  She just doesn't have the patience to take her time with drawing.  So much to think about holding the marker:  the right grip, how hard to push... much easier to just grab and scribble.

I chatted with her OT today and she says she has seen a big improvement in the past couple of weeks.  When asked if she wanted to write her name on whatever they did in OT apparently, for the first time, Ayden Jane responded positively and just asked for help.  Now, I will never know how much it is because of the glasses or just plain feeling better or getting back to school... but I honestly just don't care!!  Writing has been her biggest weakness so to have it coming in any form makes me happy.


Tuesday, October 2, 2012

Happy Birthday AJ !!

Wow, Ayden Jane is officially 5!

We did not do the invite your class birthday party thing...  Honestly, we haven't for any of our kids.  We tend to be more of a family celebration sort of family.  Celebrating Ayden Jane's birthday has been a several day affair this time around.

Kayla came home from Clemson which was a huge present for Ayden Jane.  Thank you to Kayla's friend Ali who provided Kayla with transportation and Ayden Jane with an extra special birthday.

First up, Ayden Jane blowing out the candles.  We had lots of chances for this picture because apparently, we need to work on her blowing skills. LOL.

So what are they?  Strawberries and bananas dipped in dark chocolate.  She loves to make 'em and loves to eat 'em.  No interest in cake, these are her favorite things hands down!

 

Next up we have a day of swimming and paddle boarding in the ocean!!  It was cold, but they had a great time anyway.

Yep, that's Ayden Jane getting a ride out in the 'deep deep' on the paddle board.  She thought it was the coolest thing ever.



This is Ayden Jane playing with one of her presents.  I think it is the first thing she has drawn on that she actually likes to draw on!  More on that coming up!




Friday, September 28, 2012

A Tale of Antibiotics

Ayden Jane was on the Amoxicillin for 6 days.  There was improvement.  Behavior was better, but not quite herself.  Less hungry, less anxious, less snoring, better energy... but still just not quite herself.  As for the cough?  Green goo?  Barely put a dent in them.

I took her back to the pediatrician today because I just didn't see 4 more days of amox. winning the battle.  Sort of like it is strong enough to make things tolerable and keep the infection under control, but not strong enough to actually kill it.  We have put her on Augmentin and if this works, we will likely never use the first course of antibiotics again.  I was hoping I caught this one early enough... but I guess it just doesn't work that way.

I started the Augmentin last night, so here's hoping by tomorrow morning the thick green goo is thinned out or gone!  Hoping my happy go lucky kid, full of energy and silliness returns to her crazy self.

Wednesday, September 26, 2012

Best Friend

Ayden Jane talks about lots of the kids in her class at school.  Some names come up more often than others of course, but at least in her own mind she is friends with everybody.  That is awesome, but I often wonder how reciprocal the friendships are for AJ.  I mean, she is definitely willing to talk to others, she is learning to play with other kids much better and is more interested in making friends with other kids now than talking to adults. That's improvement for sure, but I still wonder...

There is a very sweet, tiny, little girl in AJ's class who AJ talks about more than the others.  Ayden Jane reports her as her best friend...  Today, her teacher saw me as they were coming in from the playground and said, "those two are so funny together.  They are totally opposite but inseparable."  I almost cried.  

Sunday, September 23, 2012

Antibiotics Again

Thursday I took AJ to the doctor.  The real reason we went was because I had that feeling her (our) cold was turning yucky and I wanted to get ahead of it.  She didn't seem too bad and some of the definite indicators of last year were not really there yet.  I talked it over with the pediatrician and we decided to give her some mucinex to see if we could thin out what was left of the goo and clear it with a back up script of amoxicillin. 

Friday morning she seemed a bit better so I held off.  Then came Friday night.  When will I learn?  Behavior went out of control, a thick cough developed, she wanted food...  She even looked puffy.

Sat. morning (her first soccer game - story to come later) she was okay, but only because it was morning.  I started the antibiotic and the change was amazing.  By Sat. night she was calmer and her eyes were beginning to clear up.  She slept much better and the snoring had gone down to the normal occasional squeak.  

We had a great day today at Mckenna's soccer game.  Well, more accurately on the zip line next to the soccer field!  I wanted video, but I just was never able to make it happen.  The zip line is low to the ground, but goes pretty fast!  Ayden Jane did it over and over again.  Very cute.

I guess it just always amazes me to see the change in AJ between healthy and sick.  I mean, everybody gets a bit grouchy or whatever when they don't feel well, but it is one of those things that is so extreme with AJ.  It creeps up slowly so I don't really see how bad it is until she feels well again.  Really hoping this one course takes care of things and I can see how AJ handles all of school and therapies and soccer and... when feeling well.

Saturday, September 22, 2012

Scoliosis

Ayden Jane was screened for scoliosis at age 3.  All looked great.  We did not x-ray her at age 4 and I would guess that she was still okay.  Last winter took such a toll on her and she seems left unable to use gh as effectively (as determined by the need to lower her gh dose by 0.2 to keep IGF-1 levels in check).  Her tone is not as good as it once was.  Not saying it is bad for PWS, but it is not great.  We saw a big change in her posture by late summer.  Although her Endo, Ped. and PT could not see any outward sign of a curve when they checked her back, I just wanted an x-ray anyway.  Turns out that 'something is just off' Momma intuition was right.  Sometimes I really wish I was wrong.

Ayden Jane has a 23 degree curve according to the x-rays at our local hospital.  Now, I will add that she was less than cooperative as it took a while and she just does not stand still very well.  I have no idea how much those things play into the results.

So, what do I do next is the question.  I contacted Dr. van Bosse in Philadelphia as I just do not have the time or energy to try to find someone here with the expertise or open mind that I need.  He is treating a lot of patients with PWS so I just want to go where I know she will get great PWS/scoliosis care.  He is taking her on, but I haven't heard yet from the folks that start the ball rolling so to speak so I don't know how long it will be until I get her there or what hoops I have to jump through.

He did say that a 23 degree curve is in the 'observation' phase.  If it were to increase a few degrees it would be considered to require intervention.  Since I feel like 2-3 degrees has got to be within the margin of error I really want to get up there!

Okay, so that was the nuts and bolts.  How am I taking it?  Not great.  I think about where she was 1 year ago and how she is doing today and I just feel like I am losing the battle.  Her tone is less, she has added weight, she is sick again (UGGG), she has and obviously needs glasses, we have had a few behavior issues (likely related to being sick though), we had to reduce gh because her body just does not metabolize it as well as it did.... I think we need to begin to cut back on food because with the reduced gh she just does not burn as many calories.  So frustrating.  Just wish I could figure out how to get her back to where she was.


Friday, September 21, 2012

Glasses


Well, it's not great, but here is a quick picture from my phone.  We picked up Ayden Jane's glasses late Monday.  I have to say I was pretty surprised when I looked through them and realized just how poor this kids vision has become!

She has been pretty good about keeping them on at school so, for the most part we get those 3 or so hours a day in them.  Not much luck outside of school so far:(  I guess it will come.

OT says that she sees a difference in Ayden Jane's ability to stay on the lines with them on.  Also PT commented on how hard she is working to adjust to them.  All in all I think its pretty exhausting for her.  More changes, more changes...

Thursday, September 13, 2012

PWS Sucks Kinda Day

Yesterday was just one of those days.  It was one of those days where, as a parent you do what you can, but you mostly you just have to watch what PWS does to your kid.

I'll try to explain what I think is going on.  We have been back to school and all our therapies.  The other kids are back in school, Gary is (thankfully) getting a bit more work.  Soccer has started back and schedules are packed for everyone.

Ayden Jane has needed some of this and took to it all with tons of excitement and the energy that came bounding out was, well just read back a few posts... LOL.  She has been craving all things big muscle and fighting sleep with all her being.

So the stage is set.  Yesterday brought OT before school, school and then PT after school.  Ayden Jane flipped out before school because she could not ride with Daddy to take Mckenna to school.  (She would not have had time for any breakfast before her day was under way)  Crisis one settled and off we went.  During PT, she was a bit goofy and avoiding some things...  Then she nearly fell from the rocker board.  Okay, for this kid to nearly fall is nothing new and typically she could care less.  Panic took over for a moment.  Jen was surprised as she does not ever get to see this side of AJ.  (as most kids do, she saves these treats for us parents)

After a snack and nap I thought we were in the clear.  Not so much.  Gary and AJ took the dogs to the field.  She LOVES to do this.  It is the local HS football field and Ayden Jane usually runs around with the dogs, rides a scooter or bike around the track...  Last night she was determined to carry her bike (2 wheeler with training wheels) up to the top of the bleachers and ride it down.  Ya think she is craving some deep input to her muscles, maybe???  She melted into an irrational puddle because Daddy wouldn't let her.

Gary came in and passed her to me with these words, "I hate what this stupid syndrome does to her."  He was angry and heart broken all in one.  Her behavior was unreasonable and she was truly not in control.  All she knew is that somehow carrying that bike up and riding down is what she NEEDED to do and Daddy said no.  She couldn't reason.  She couldn't understand why it was unsafe because she couldn't use that amazing little brain of hers at all.  All she could do was scream and plead to do something he could not let her do.

In the end, I believe that she has had too much of too many great things.  She just is not able to process all the stuff coming in and her little system is just overwhelmed.  She is exhausted and 'strung out'  She is stuttering something awful.

We took today off from school to lay low... We are going to go back to joint compressions and massages and maybe brushing.  We will work through this like we do everything else.  We will be creative, we will win, but that doesn't mean that there will be no more days where we "hate what this stupid syndrome does to Ayden Jane."

Wednesday, September 12, 2012

Glasses

A couple of days ago we had an eye appointment.  It was the second trip to the eye doctor.  The first was at age 3.  We were supposed to return in a year, but alas it has been 2.  Honestly, I don't think there were any issues a year ago, but this summer we started to notice her right eye turning inward and just some other little clues that maybe she was having trouble focusing on things.

Well, it is official, Ayden Jane is farsighted and has a pair of glasses being made for her.  Of course she chose purple ones!  No orders to keep them on her for X amount of time or anything.  The doctor feels like if we just let her get used to the feel of them, sort of at her own pace, that she will then want to wear them because she can see better.  I hope so.  At least he said not to wage war over them!

I know that glasses are not really a big deal in the grand scheme of life.  In fact, she has a little boy in class at school that has been wearing them since last year.  My head knows they are not a big deal, but my heart is a little sad for her.  We have been fighting so hard to get her healthy since last winter, we are making improvements in her legs with orthotics and a knee brace on the way.  Adenoids are out and immunology is a bit better.

Ayden Jane is amazing.  She is doing so well and is really and truly about middle of the pack at school.  She has boundless energy and works so hard at everything she does.  Food is not a big struggle for us.  On the outside, to those that don't know us well, Ayden Jane is just an average 4 year old that is a little quirky.  (as most 4 yr. olds are)

What they don't see is the speech therapy, occupational therapy, hippotherapy, physical therapy, added exercises at home... They don't see the pressures of enough but not too much food and the million choices in a day that we have to make.  They don't see the melt downs that for now, AJ pretty much only blesses us with.  The financial strains it all places on our family.  The challenges of always having one eye on her because you just never know what she will do!  (Like take a trip to the local playground by herself)

So, somehow glasses are the straw that broke... okay, that's a little over the top.  I guess I just feel like our plate from the PWS buffet is getting full.  I AM thankful that our plate is not nearly so full as many others and I almost feel guilty for feeling sad about something as small as a pair of glasses.

We will suit up for school in our orthotics, knee brace and glasses and Ayden Jane will troop on without a care in the world.  That's the most amazing part.  She just takes it all in stride and rises to every challenge.

So glad God gave a special spirit to these special kids.


Monday, September 10, 2012

Activity Level

So, over the past week or so Ayden Jane has begun to have an incredible activity level.  It is sort of odd, but it began around the time we reduced her gh.  Typically, gh adds energy and strength so I am not sure the increase in energy is connected, but glad that her energy level has not decreased.

She is also doing such a great job of socializing and is learning to really play games with other kids.  I know, she is a kid so of course she is playing kid games.  Not so simple for a kid with PWS.  First of all there is the need for lots of energy to keep up.  Secondly there is a quick processing speed required for most kid games.  Finally, there is the whole winners/losers, getting tagged... stuff to deal with without getting upset.

Great example last night was led by Mckenna.  After some boogie boarding in the ocean (with some friends AJ made on the beach by the way) we swung by the pool.  A couple of boys ages 9 and 12? asked Mckenna and AJ to play sharks and minnows with them across the deep end.  Now obviously they were mostly asking Mckenna, but they were great about AJ playing along.

Ayden Jane has 'played' the game with a pretty big pack of older kids before but mostly just sort of swam a little watched a little...  Last night she was really interested in the rules and was totally understanding how to play.  She swam hard (and the big kids were great with her!).  She went back and forth across the deep end, climbed out the side all by herself and even was the shark a couple times when tagged!  (Mckenna to the rescue as she was shark with her)

Then today in the play place a little boy wanted to play with her.  He was about 7.  They played tag and he did give her a little head start after she tagged him, but other than that it was pretty straight up.  It took her a long time to tag him but she just kept running and trying.  He was really kind to her and after they were done he tried to teach her some moves to avoid being tagged better.  Honestly, it was the first time she has really caught on to this game too.

Good stuff cooking in that little noggin!

Thursday, September 6, 2012

Immune System Fortified

Whew!  Results back today from AJ's immunology lab work and she has responded well to the re vaccination. Woo Hoo!!

Now that we are back to school and the inevitable cold and flu season are right around the corner it is such a relief to know that Ayden Jane now has at least some defense against bacterial infection.  With the giant adenoids gone so better drainage from colds and a boosted immune system we sure have hope of a better winter.

Tuesday, September 4, 2012

Labs and More

We had labs drawn early last week on Ayden Jane.  We were checking thyroid and IGF-1 level for endocrinology and some things for immunology.  So far we have heard on the endo stuff.  Thyroid still looks good, check.  IGF-1 has come down, but still not far enough so we are dropping her gh dose by 0.1.

In the aftermath, of all of this I have had some lengthy conversations with Dr. Miller about all things Ayden Jane.  She has rechecked her diet for carbs that could be giving a 'false raise' to her IGF-1 level.  She does not see anything in her diet (no hidden carbs) that would be adding any problems.  So, basically, we know that Ayden Jane is simply metabolizing the gh differently than she did before illness (BI).  Not sure if this was going to happen anyway or if it was brought on by illness, but guessing that illness was at least a piece.  The improvement in IGF-1 is one way we can see improvement through lab work.

Other ways I see improvement include the recent jump in social skills, sleeping through the night (most of the time) and very recently a jump in her energy level.

Evidence of her energy level was Labor Day Weekend.  Saturday, after the 2 plus hours bouncing I mentioned in an earlier post Ayden Jane followed that up with wanting to 'run' to the playground and play.  She is cute when we go 'running'.  We walk, then she picks out a mailbox or something to run to and we run, walk and repeat...  Anyway, we made it the 0.8 miles there, played and then back.  Whew.  So what did she want to do at that point?  She wanted to ride our bikes to the playground and repeat!

Sunday came and after church we spent several hours at the beach...

Monday we went to the water park and she never slowed down!  We did, however, revisit an old issue.  She ran so hard she absolutely crashed.  Melt down in the wave pool!  It was irrational and she didn't make sense.  I knew she needed food and tried to get her to eat but she refused...  It was about time to go anyway so we just gathered the other girls and headed out.  She snoozed in the car on the way home, after sobbing a bit.  When I got home she still was irritable and irrational.  She refused to eat anything we had in the house.  Finally, I got her to eat some grapes and a calm, sweet voice chimed in, Mom, can I still have a plum?  It was like somebody flipped a switch.

Sounds awful you say?  It was, but I was almost happy it happened because it was how she used to be... You know BI.  So, I would say we are seeing continued signs that Ayden Jane's little body is still trying to recover from last winters illness, and it is recovering.... just..... very...... slowly.

Saturday, September 1, 2012

Social Skills and Other Great Stuff

I hear a wide variety of things on kids with PWS and social skills.  Some fall into the autism category so that sort of takes the for front in the social skill area.  Some are huggers, some have very poor communication skills so that hampers their abilities, food issues keeping them from attending social events, cognitive delay and a whole host of other little things that add up to having trouble making and hanging onto true friendships.

That is why I am so excited to say, the biggest jump this summer has been social skills, particularly with her peers.  She has been talking the ears off of adults for quite some time now, but lately she has done a much better job of truly conversing and playing with her peers.  One example is that last year when she went out to the playground at school, she usually chose to chat with the teachers over playing with the kids.  When she played it was mostly next to friends not really with them. I stopped by school and she was swinging with a friend and challenging her to see who could go higher.  Then she ran off to the slides and joined in follow the leader and finally jumped into a big car thing with a new girl and the two of them were talking and laughing together.


I was amazed as AJ was watching some show, that she started naming letters.  She pretty much nailed them all and I had not touched the topic all summer.  Tonight as we were riding bikes she sang songs.  She used to sing the first line or two and then sing that over and over.  She sang several songs all the way through remembering quite a bit of each song.

I heard the comment, "she is really smart" from a lot of different people lately.  Some know of her PWS some do not.

She made up a game when she was playing with Mckenna.  It was complex and fun and the ideas were all hers.  Mckenna was very impressed.

She loves numbers and is constantly counting and comparing.

She played at a bouncy place with lots of inflatable toys today.  She made 2 friends and they all ran around in a little pack.  She kept up physically, verbally and was truly one of the pack...  We were there for 2 hours and the girls were part of a birthday party we must have crashed so there were lots of other kids there they knew.  They wanted to play with Ayden Jane.

Thursday, August 30, 2012

Good News

A lot of 'extra' things have been going on in the background lately.  First up, I have been trying to find work that provides a bit of extra income and still makes it possible for me to handle all our families needs.  Today I spoke with the director of Ayden Jane's preschool.  She has a plan to pull small groups of children from the classes to work on some extra skills.  Things like sensory based thing, gross motor and fine motor.  Yep, a bit of PT and OT mixed into fun for all kids.

Originally, someone was to head up the program but she has since taken another job.  Enter ME.  I will be working there 4 days a week and will be putting all that I have learned with early intervention ect. to good use.  Time to grow some little brains, make some neurological connections and improve some skills!

I have a couple of weeks to put the program together so please feel free to throw any ideas my way!

Next up, I had a TEFRA reeval today.  That is what SC calls the Katie Beckett program.  This program provides medicaid to people who may not qualify under financial reasons.  Basically, if the level of care needed for the child/person is high enough due to the disability medicaid can be given to help with medical expenses.  In our case, Gary has good insurance, but it is a huge help (and stress relief) to have some added help with all the copays for meds and appointments to specialists and lab work...

Basically, a nurse who works for the state came to interview me and see Ayden Jane.  She listened to all that goes into caring for Ayden Jane.  Also, AJ cooperated nicely by getting totally stuck in conversation and panicking at one point about something tiny and tripping.  We talked about the safety concerns including food, no fear and 'eloping'. All the necessary therapies.  The orthopedic things we have going on right now with her orthotics, scoliosis screening and posture.  Add in eyes, immunology .... all of it.  She says she does not see any reason that AJ will be dropped from the program.  I hope she is right!

All in all, a good day I'd say.