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


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


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


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.