AJ Still Looking Up

Well, we are 10 days post antibiotics and all still is looking good.  It is great to see her energy return and awesome to see her body composition slowly shifting back to 'typical'.  The most fun, though is the little personality is back.

Here's her little trick from yesterday.  She wakes up at night and comes in with me.  In the morning she is awake and ready to go long before I am, at least on weekends...  She will wake me up and ask me to turn on the TV.  This works well for both of us because if it is just too early I will tell her to go back to sleep, but at 6:30 some shows she likes come on.  This Sat. I turned the TV on and rolled over.  A bit later Ayden Jane whispered to me in my pseudo sleep, "Mom, can we go out in the living room when Monkey George is all done?"  Seemed reasonable to me so I said sure.  Ayden Jane then giggled and said, "Good.  Monkey George is all done mom!"  I looked up and sure enough, the music was playing and the credits starting to roll.  She totally set me up!!

Oh, and yes, I found it hilarious and we had quite the tickling/wrestling/giggling match before we headed out.

Growing Up Now a Days

 This post is a bit off topic as it has nothing, really, to do with Ayden Jane.  I know it is often a topic of conversation how kids these days are exposed to so much...  We have had some definite personal experiences with this lately.

Kayla and Noah are good kids.  They are not perfect, although Noah would tell you that Kayla is a near impossible standard to live up to.  (some day he will believe us when we tell him we just want him to be the Noah God created him to be)  Sometimes I need to remind myself how hard it is for them to stay that way and give them some credit.

Kayla has basically made it through the teen years and is making all the right choices at college.  It is so cool to hear her talk about life and plans and know that the whole world is open to her.  Remember how that felt??

Noah is still in the thick of things.  He is a nearly 17 year old boy who has never really loved liked school.  He feels such pressure to get good grades, but does not really have the desire to do the work...  He did fine the first couple of quarters but, well, he, uh, needs to refocus.  He was late getting out the door yesterday (again) and Gary had had it.  We already could tell something was up and it was the straw that pushed Gary out the door to the school to check in with his teachers.

After the morning "discussion" about the importance of school and getting there on time, Gary discovered from teacher 1 and 2 that Noah was missing a lot of work.  Of course, Noah told us that he had no homework... Gary's blood pressure skyrocketed and luckily for Noah he was not within reach.  Then a bit later when Gary was able to sit down with another one of his teachers, he was told this by the teacher (paraphrased of course), "First of all, I want you to know that in my 14 years of teaching I have only had maybe 3 students I would say this about.  (Gary is expecting the worst)   I hope my boys grow up to be like Noah.  (jaw drops now)  You have raised a fine young man and I hope I can do as well as a father."  At this point Gary's head is spinning and he is at a complete loss for words because just a couple hours earlier he was as angry with Noah as he has been in a long time.

On the social scene, our kids live in a world where drugs and alcohol are readily available.  This may shock some of you, but parents even supply these things under the notion that, "they're going to do it anyway so I'd rather they do it at home with their friends than...."  This in turn creates a culture that rules don't apply or that when laws get in the way, just find a way around them...

My kids have seen childhood friends that were lively, awesome kids fall into the pit of such things.  Some will not make it through high school and a few are dealing with legal issues.  I stinks.  It is painful for me to watch and I know it must be hard on them.  They know so much more about drugs, alcohol, divorce, violence... then I ever had to deal with.

I am really proud of them.  They know God, love Him and do their best.  No they are not perfect, but their hearts are good.  We couldn't be more proud of them.

So Far So Good

Well, we are on day 5 post antibiotics and still clear!!  Woo hoo!!!

I know, it seems a bit over the top, but when she sneezed yesterday my heart skipped a beat...

Ayden Jane is getting stronger every day.  Her energy is returning, but she definitely gets tired way quicker than she had.  Her little personality is returning and the vocabulary oozing forth is so fun.

It has been fascinating during this recovery time to see how much of it all Ayden Jane understands and is willing to accept.  I think she is so tired of being sick, that she is willing to do pretty much whatever I say will help!  She has accepted that there will be no staying for 'lunch buddies' at school because we will be napping every day.  This is HUGE.  She loves lunch buddies and usually it is the first thing she asks about every morning.

While sick, Ayden Jane craved carbs.  Typically she does not, and is totally happy with the foods she is used to eating.  As she has started feeling better those cravings aren't really there, but habit has set in a bit.  So, we have been teaching her things like, only 1 fruit with a meal and not constantly snacking.  She had gotten to the point where she wanted apples, oranges, berries... with every meal and for snacks.  She dreamed of bananas.  She had her couple of episodes of getting into things she knows she doesn't eat.  Also, she just wanted to snack way more than usual, I think just sort of to feel better.

When I talked to her about all that yesterday, it was interesting that she can start to put words to it.  She said that sometimes her brain is just to strong and makes her want to eat or do something she knows she shouldn't.   A funny way of saying it, but interesting to see that she knows the difference on some level between craving something and typical hunger.  Doesn't mean she can stop it at this point, but interesting that she is learning to understand herself to some degree.

At this point she is totally on board with whatever will, "make my blood not sick anymore."  We will be working hard at resting well, playing hard for short periods and eating well for the next month.  Then we will check to see how that blood is doing :)

When I Was a Baby

Lately, Ayden Jane is obsessed with what she did when she was a baby.  Did I talk when I was a baby?  Did I cry when I was a baby?  Did I eat almonds when I was a baby?  Did I walk when I was a baby?  You get the idea.

We have looked at book of pictures of her first year and she is just amazed.  (Thanks again Dina)  I haven't really looked through those pictures too much lately either so it has been fun.  We talked about the tube that helped her eat and how she was a very, very quiet baby.  We talked about how much she has learned and how hard she has worked... She has no idea that these first 4 years for her are any different than any other 4 yr. old's first years.  I love that.  She is so proud of all the things she has learned.

One thing that has really intrigued her is that when she asked if she talked when she was a baby, I told her she didn't use words with her mouth, that she talked with her hands.  I remember counting up her signs when she was little and she had over 40 of them. (and maybe 10 words including all of our names) Of course, now I can only remember a handful but AJ really enjoys re learning them.  At the time, I was so glad to hear her, I didn't even try to help her keep any of them.  I think Mckenna probably retained more signs than any of us!

Endocrinology Visit

Thursday we had our regular scheduled visit with Dr. Clark, our 'local' endocrinologist.  (She is awesome by the way)  It was Ayden Jane's last day on Augmentin and we talked through this crazy winter.  I will try to hit the highlights in no particular order.

Her height and weight measurements are awful...  Basically her weight percentile has sky rocketed.  I knew this as I have watched all this illness wreak havoc on her body.  It is always still hard to hear/see in black and white, but I was pretty well prepared for it.

Dr. Clark has an interesting idea for what may have been happening last week with those bizarre 'crashes' that Ayden Jane was experiencing.  She is wondering if it is, at least in part, related to blood sugars.  Of course, it appears like hypoglycemia, but how do you regularly schedule hypoglycemia?  Her idea is that it is possible that since the infection causes such inflammation in her which in turn causes insulin resistance, maybe the infection finally subsiding was causing the inflammation to subside and, in turn, AJ to not be so resistant to insulin; but that the added insulin in her system from being resistant was causing crashes.  Whew!!  I know that is way too medical, but it is there for those of you who are interested in that part.  Just ask me if you want a better explanation!  Dr. Clark gave us a glucose monitor so that if she has that trouble again, we can test that theory and make sure AJ is safe.

Assuming Ayden Jane stays well, (on my knees praying Ayden Jane stays well) we will recheck all her labs the last week of March.  We are giving her plenty of time.  I am hoping that she will stay well, rid herself of the negative effects of all the illness and antibiotics and 'get her blood better'.  If that happens we can likely get a bump in gh which will help with getting her physically back to where we should be.

The plan is lots of exercise, but also lots of rest.  The coming months are CRAZY busy.  Between Gary's coaching, Mckenna's team and Noah's two teams we are now up to 38 soccer games in the month of March alone.  Possible trips to Richmond and Columbia for tournaments on weekends.  I would love to jump in and do it all, but I will have to be careful to not over do with AJ.  Should be interesting.

Sugar Story

So, we have been telling Ayden Jane for as long as she can remember that 'her body does not work well with sugar'.  The phrase sort of evolved over time.  "Sugar is not good for you" is used upon occasion, but then she asks, "is sugar good for Mckenna?"  (my carb addict).  You see where that goes.  So, she knows sugar is not really good for anybody, but most people can handle some sugar.  She mostly believes us that her body really just can't handle sugar.

Last Sunday (as we were discovering the infection was back) AJ got into a box of fig newtons.  She totally set her brother up as she knew I was running Mckenna somewhere and he was in charge.  She told me when I got back... which I give her credit for.

In the end, it was a great experience!  I know, how could that be a good thing?!  Ayden Jane felt AWFUL after she ate them.  I don't mean feeling bad in the emotional sense, I mean they made her feel awful physically. She was agitated and stuttering and slurring and emotional and miserable.  Her brain was foggy...

As she cried and told me how bad she felt I told her, "that's how sugar makes you feel."  I told her that now she knows why we work so hard to keep her away from it.  That when we tell her that her body doesn't work well with sugar we mean it will do just that to her...  I drove it home.  She looked to Noah for sympathy but he totally took my lead.  After about an hour of feeling awful she fell asleep and woke up with a killer head ache.  We told her again, its the sugar...

Maybe it was cruel, but since then, she has a new respect for the power of sugar.  It was a harsh lesson and not one I would have chosen to teach her that way, but one she learned really, really well.  For now at least.

What a Week

So Monday we started the Augmentin.  The big guns for sinus infection.  Tue. Ayden Jane felt great and she had a BIG busy day.  Then Wednesday came.  It was a little scary.

I took her to school Wed. morning and when I picked her up they said she had a rough day.  It was our day for PT and Ayden Jane was excited, but by the time Jen came (1:00) she was out of control.  Sort of like when you are crazy over tired but just can't sleep.  We just abandoned PT for the day and moved on to a 90 day review which we needed to do next week anyway.

I put her down for a nap and she woke up really 'out of it'.  She tried to play a bit, but cried over nothing for like 20 minutes.  She would try to tell us something but between the stuttering and the slurring I couldn't get it and I don't think she could even remember what she was saying.  She finally came around to a bit around 5:30 or 6 so we went ahead to Noah's basketball game.  She was fine there for a little while then became clingy and fell sound asleep in the screaming gym.  I couldn't really wake her after the game and when we got home and due to concerns over adrenal insufficiency I decided to give her a dose of steroid.

Next morning she woke up pretty well so off to school she went.  The afternoon was similar, but not as severe. It is Sat. and we are on the same pattern, but getting a bit stronger every day.

Dr. Miller was kind enough to call me during all the mess.  LOTS of theories were thrown about and questions asked.  In the end we believe that she has some adrenal insufficiency and is just going to take a lot of time to get over all of this illness she has been fighting.  Not exactly sure why Wed. was so bad, but guessing that the combination of sinus infection, worn down body and burning up all the reserves on crazy Tue.

It is so strange to be trying to keep her slowed down today.  I feel like for the last 4 years, the goal was to keep moving at every opportunity.  Almost with a fervency, like missing one opportunity to move and groove and work on PT was going to have catastrophic effects.  Now, suddenly, she asks, can we go to the play ground?  No.  Can we go swimming? No.  You get the picture.  It is working though.

In the end, this winter has been hard on her body.  She had a lean, athletic body going into winter.  Not so much any more.  She likely needs more gh, but we can't because the illness had made a mess of her labs.  Now I have to slow her down.  uggg.

The last big surprise of the week is that her allergy testing has eosinophils at 8.9 and IGe levels over 400.  These scream highly allergic kid, however, even her blood testing for allergies show her to be allergic to nothing.  The allergist/immunologist is baffled.  I am hoping that the augmentin will kick this sinus infection for good and in the end the allergy testing won't matter.  Sort of like, just a miss firing immune system.

Whew.  There's more, but it will have to wait.

Just the Mom

More lab results.  More ways that lab results don't make sense for what we are thinking.  More paths to explore.  Hard day on AJ.

I don't have the strength to go into it right now and I feel like whatever I say will likely not apply a few hours from now anyway.

I am a Mom.  I am the Mom.  Some days I want to be JUST the Mom.  I feel it must be true of all special needs moms.  Some days I just don't want to be the Dr., I just want to be the mom.  I don't want to be the detective I just want to be the mom.  I don't want to be the eyes and ears of the far away doctors, I just want to be the mom.  I don't want to be the dietitian, the allergist, the mad scientist, the physical therapist or any other therapist; I just want to be the mom.

Today is one of those days, but it is not an option.  I guess I will just look forward to and remember to thoroughly enjoy the next day I get to be, just the Mom.  

NNNOOOOOO!!!!

I've seen it coming, but was hoping it was not so.  Stuffiness last week. Wet at night. Sticky yellow nose Sat. Looking for carbs. Sun.  Coughing up yellow/green goo Mon.

Infection has returned...  Here we go again... Despite 20 days on Zithromax followed by nasonex and zyrtec...

I have calls into all the right people and we will be treating it soon.  My question is whether it is the same infection that we just cannot kill or something causing recurring infections.  I am thinking we will likely go with the big guns of antibiotics and answer the first question definitively first by seeing if we can knock this out.  I think Augmentin is next on the list for that.

If that doesn't take care of it, I believe the allergist/immunologist will get the assignment of finding the cause for recurring infections.

Most important to me is that we have been at this since Mid Oct./Early Nov.  It has had AJ's blood work screwed up and her IGF-1 way high for WAY to long.  It needs to be fixed!!!

Ayden Jane sometimes just needs to reset herself.  She sort of 'gets in the zone' and plays for a loooong time by herself.  It is such a nice change of pace!!  Here is some of her handy work.  She explained to me that they all needed swimming lessons and were doing a good job taking turns...

She was really good about helping to clean up today too!  I think that was equally impressive...

After all was cleaned up it was time to head to the soccer fields/playground.  Ayden Jane was in great spirits and had lots of energy to burn.  She took a baby and lugged her up and down all the slides, went for rides on the swings with her...  

There were lots of other kids on the playground as well.  Sometimes Ayden Jane just roams around like they don't exist.  Tonight, however, she 'taught' another little girl how to get up some challenging bars and across to the slides... It was hysterical.  I think she just channeled her inner PT.  The little girl was just about Ayden Jane's age too!  Then she talked an older girl into teaching her how to cross the monkey bars!  Ayden Jane never quite got it, but it was so fun watching the girl show her, practice on other equipment...  AJ really tried too!

Allergies, Will We Ever Know?

I took Ayden Jane to see an allergist/immunologist today.  We are trying to get to the bottom of a pretty significantly elevated eosinophil count.  What is and eosinophil you ask?  Basically it is a form of white blood cell that is elevated in the blood when allergens are present.  There are other reasons it can be elevated but those are much more rare and, hopefully, won't be the cause for AJ's.

We did the 'scratch test' for allergies.  (Not sure why it is called a scratch test as there is no scratching involved.)  Ayden Jane was great and tolerated the 15-20 min. she had to lay 'still' on her tummy.  Of course, however, she proved to be her classic ATYPICAL self.  Nothing reacted, not even the control.  This makes the test completely invalid.  We could have waited to do a blood draw for allergy testing that way, but I am not known for my patience.  I want to be sure it is allergies!  So, they drew her blood in the office.  I am so glad that she is really okay with this process and has become a pretty easy stick.

The results will be back in about a week.  In the mean time we will use Nasonex nasal spray and Zyrtec.  I am glad all the results will be back before I go see Dr. Clark (endo) on the 16th and we can sort of hash through all of this and figure out where to go from here.  Whew.  This has been a long confusing winter!  I am ready to solve this mystery...