Monday, July 30, 2012

Surgery Day

Today's adenoid removal was Ayden Jane's first surgery, first time under anesthesia.  We went in prepared for all things but expecting things to go well.  Here is our day.

We left home about 5:45 to head to Charleston.  No breakfast, no drinks and well prepared that they would not come until we were all done.  Ayden Jane asked me maybe twice, "I can't eat anything, right?"  It was a bit of a hopeful plea but she did not argue at all with the answer, no.  Big hurdle covered.

She was not scared and entertained herself well.  I laughed as the doctors and nurses came in and introduced themselves.  "Hi my name is Dr. ________."  AJ:  "what's your whole name?  What do you like to do when you are not here working..."  It seems that Ayden Jane felt that since everyone felt free to ask her questions, she should feel free to interview them!

She chatted and made pictures with stickers and markers and was great in pre op.  When it was time to go  back she didn't flinch and rode away without a care.  (insert, hey! won't you be a little worried without me?)

I went to the waiting room and hung out.  Well, after I ate some breakfast!  I really liked the big board they have up where you can sort of watch the progress.  Okay, not actually watch!  When I first looked she was in transport.  After a bit, it showed up that she was "proceedure in progress".  When I saw PACU I knew it was soon time for them to come for me.  It's not much, but it is great to have that tiny bit of info as they go.

Afterwards, Ayden Jane woke up fine, just a little slow.  Dr. White came by to talk about how things went.  I have to pause for a public service announcement.  Dr. White is AWESOME.  He is great with AJ, me, knows his stuff and was happy to talk to Dr. Miller before surgery.  His first report was that Ayden Jane's adenoids were "quite large".  It may sound crazy but this was music to my ears!  As the day approached, I started to wonder if I had been imagining some of the trouble.  If maybe the adenoids were not a part of the problem and I was putting AJ through this for no reason...  If the adenoids had not been too big then hopes that removing them would help would sort of no longer exist.

Dr. White explained that he took most of the adenoids but left a flap or slice of each so that her speech would not be diminished.  He had spoken with Dr. Miller and referenced their conversation as he told me that there might be a change in her pitch, but that was normal.  The trouble could come in if the adenoid removal impaired her ability to produce certain sounds.  He told me to let him know if there is any decrease in the intelligibility of her speech.  It was just so great to see/hear him very concerned that not only were the adenoids out, but that he had taken care to be sure the surgery was as effective as possible.

When AJ was awake enough to be released we headed on home.  All she could talk about was going to the Wendy's by church.  It was 2 hours away from where we were, but Ayden Jane fell sound asleep in the car and woke up close to home.  Again, "I want to go to Wendy's by church."  It is pretty funny because we just don't really go there much.  I went for it and she literally ate chicken and pecans!  After we got home she went about playing and was loud and crazy and no one would have known the day she had.

No way to predict what this kid is gonna do.

Sunday, July 29, 2012

Preparation, Not an Exact Science

Ayden Jane will have her adenoids out tomorrow.  Obviously we need to prep her for the day, but it is more of an art to know how much to talk about it.  She was doing great with the thought, as carefree and confident as she was with all other doctors appointments...  Then came today.

She was not horrible, but she started to show some nervousness.  It totally came out as talking repetitively and getting slightly panicky over things that are just not normally stressing to her.  At about 5:30 she declared  it time to go to bed so she could wake up and go to the hospital.  Basically, I think she knew she just couldn't think about it any more...

Luckily, Mckenna was at a birthday party and we needed to go pick her up so distraction was provided!  Once we came back it was off to dreamland pretty smoothly.  Hopefully, the morning will go smooth as she has been prepped for the fact that she cannot eat or drink ANYTHING for breakfast.  It will still not go over well.  Not so much a PWS issue as we don't really have many food issues, just a kid who loves her breakfast.

About the same time Ayden Jane is finishing up her surgery, Noah will stepping on the field to play in the finals of the US Club Soccer National tournament.  Sooooo wish I could be in 2 places at once!!!

Hoping and praying it turns into a day to remember all the way around!

Thursday, July 26, 2012

Never Take a Nap Day

Summer has been great.  We have sort of gone as the wind blows and made up each day as we go.  Ayden Jane does love structure, but we have found a happy medium by sort of planning our day when we wake up.  Things like swim team, PT and horses have added just enough "important" things to do that AJ has been good.

As for naps, they are often not convenient.  I would gladly be done with them and we sort of gave it a trial run.  Ayden Jane tries to declare every day, 'Never take a nap day.'  I went with it for a bit and discovered that she can infact skip the nap.  In the name of activity and weight loss/stabilizing it seems like skipping a nap is totally the way to go.  Add in the desire to have her sleep a little later and soundly through the night and common sense says make every day 'Never take a nap day.'

Well, it doesn't work that way.  Now I am glad to say that a day here and there with no nap seems to work just fine, but string them together and it just doesn't really work.  Ayden Jane stays awake with no problem and talks non stop, but she just doesn't really play hard.  I reinstated the nap with no options and she is so happy, active and cooperative.  Today we went to the beach at about 10:30 and the kids boogie boarded for nearly 2 hours straight.  She just kept going and going.  Her nap was a bit later since we got home closer to 2:30 and by the time we had lunch and a shower...  But then after her nap she was great and stayed up until nearly 9.

I think it is official, Never take a nap day is an occasional holiday, not a new trend.

These pictures are just for fun.  This is what a child who has spent way too much time boogie boardin' with sunscreen not quite applied properly.  Those little eyes were red inside and out!

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Wednesday, July 25, 2012

Adenoids and Orthotics

Next week will be sort of the grand finale of the summer, medically speaking.

Monday adenoids come out.  I was sort of prepping Ayden Jane for Monday.  It is always a little tricky, as with any kid, to determine how much to explain ahead of time.  You know, how much do you talk about it so that they are ready without overdoing it and making them worry for the week?

I started with this, "Dr. White says he needs to take out your adenoids because they are too big and making your nose stay all stuffy."  AJ was a little unsure of this and we talked about where adenoids are and how he is going to take them out.  AJ was a little panicky for a moment as she asked, "is he going to cut through my neck?"  I told her no, he can reach them with your mouth open and will just pop them right out.  With the panic in her voice gone she wanted to know if he would use a big knife or a little knife. 

That was a few days ago and I just left it at that.  We brought it up again today and she just explained to me what Dr. White is going to do and why he needs to do it.  I went for phase 2.  "The hard part for you, Ayden Jane, is that on Monday when we go to the hospital to have the adenoids out you can't eat breakfast. You will have to wait until we are all done with Dr. White before we have anything to eat."  AJ tried asking if she could have just a few nuts or a piece of dark chocolate.  After she got used to the idea and I assured her she could eat after (I know, I will deal with the fall out from that later) she told me, "Don't worry Mom, I can handle that.  I can wait for breakfast 'til after."  The kid amazes me the way she takes all this medical stuff in stride.

Then today during PT Jen took a look at Ayden Jane's feet.  She feels that we should head for another year of orthotics.  AJ still tends to need a little support to keep herself in good alignment.  The great thing is that school totally lends itself to making use of them.  Ayden Jane hates shoes.  She rarely wears any during the summer which is likely a good break and a chance to strengthen the intrinsic muscles.  I expect it will be just as cool this fall as it was last to see her run and move in the new orthotics (once we get them made) and shoes.  Maybe I can come up with some words to describe the difference I see when we get them.  Any way, appointment is made with Mr. Alan next Friday.  Oh, and yes, AJ is sooo excited to see Mr. Alan again.  I feel like she should be voted most likely to have an imaginary friend whose name starts with Dr.

Tuesday, July 24, 2012

Adventure for Noah

Tomorrow morning Noah begins what should be an incredible journey.  If you have read much of this blog at all, then you know that Noah plays soccer.  Lots of soccer.  He has been asked to join a very unique team that is heading to US Club Soccer National Championships in Chicago IL.  The team is a group of inner city kids from the east side of Charlotte NC.  I could try to describe what Noah is headed into, but all I really know is from the following link.

These boys could be the next awesome family film.  They are a bunch of refugees and inner city kids that love God and play soccer as a way to bring glory to Him.  They have not been playing together long but have qualified for this National Tournament and have big dreams of being National Champions.  With a few injuries, they needed an extra player or two so that's where Noah comes in.  It should be an incredible, eye opening, exhausting, exciting, amazing experience.

If you think of it, say a few prayers for him this weekend.  We pray for safety, an open heart, patience, the ability to thoroughly soak in and enjoy the experience and that Noah will hear what God has to say to him through this experience.  It will be a big switch from hanging with his usual crew!

Sunday, July 22, 2012


Wow, I am so far behind with writing lately.  It must be summer...

So, the results of the immunology lab work showed that Ayden Jane responded properly to some of the vaccine for bacterial infection however much of it showed she is very minimally protected and some even showed she is not protected at all to some strains of bacterial infection.

I took the results to our pediatrican and we decided to go ahead with the revaccination.  Just figured that it could only help to try to build immunity before we headed into a hospital for surgery.  The reaction to the shot was impressive!  The shot site became red and swollen and hard.  At it's largest it covered most of her thigh!  She was miserable and feverish 3 days later.  I think it is just really hard to get her immune system to kick into gear!

Results of the sleep study were good.  Ayden Jane has about an 'event' an hour but does not desat during them.  Also, he said that they are not obstructive in nature so there is just no reason to take the tonsils.   All in all, good for me to know as we had never done a sleep study before even though apnea issues in PWS are very common.

So adenoid removal is scheduled for next Monday.  Should be pretty quick and uneventful as surgeries go.  It will be done out patient and Gary will be home the night after so we are good.

Follow up blood work for the immune issues will be done the middle of August so hopefully at that point AJ will have good protection from bacterial infection and be better able to drain the sinuses.  Just might make it a better winter this year!

Wednesday, July 11, 2012

Rough Start but Strong Finish

Okay, so most of yesterday sucked.  Sorry, but honestly is what you get on a blog.  Nothing was horrible, just one of those days were everything you attempt to do has 3 hurdles you must cross first.  You know, like you go to run errands and they are moving a house and block your way (seriously), the notary you needed is not in today, you forgot shoes for AJ and you need to stop at the grocery store... You get the picture.

Eventually I managed to get to the hospital to pick up AJ's recent lab work.  Such a treat to find out that her white blood cell count is at 13.4 (5.0 - 11.0 is the normal range) and that she did not build the antibodies she should have, or not as much as she should have or something to infection so she needs re immunized.  Great. Add to that, next week we are scheduled to get the results of her sleep study and look into adenoid and tonsil removal.  Of course, what ENT would do that with a wbc of 13.4?!

In the end, we will take care of the tonsils, we will get her immune system boosted and we WILL have a better winter than last.  All of this is not likely related to PWS but PWS does make it harder for her to rebound... so the two sort of chase each other as chicken and egg.

The fabulous part of the day, however, was Noah.  He totally recognized that I was frustrated and stressing and had Ayden Jane climb on him and jump on him in his bedroom for a bit while he and a friend were finishing a movie.  Then he asked if he could just take AJ to McDonald's with him to play while he got a drink...  I managed to get some cooking done and clean up the kitchen while they were gone.  When they came back Noah continued to take care of AJ while I went for an awesome after thunderstorm run.  

Monday, July 9, 2012

Words and Details

Kayla and I have talked recently about Ayden Jane's love of words and details.  To some extent I think the two are connected, but I will see if that comes out after I write my way through the thoughts.

Just this afternoon Ayden Jane has latched onto the words poyannoyed (paranoid), disaster and 'oh my gracious'.  It is comical.  She spilled something, "oh my gracious Mom, you won't believe this disaster."  Then   she described her room, quite appropriately as a disaster.  I am not exactly sure why these words came out when she was playing with Mckenna but here they are, "Oh my gracious Mckenna, you are so poyannoyed."  After all the attention she got (in the form of laughter) over the word poyannoyed she continued to use it in all sorts of ways the rest of the afternoon.

She also notices the words that we use and asks what they mean.  She is just taken with words.

Details are her other favorites.  She has taken to asking people their whole name, if they have kids/brothers or sisters, pets...  Then wants to know all about the pets.  She remembers many of the details.  When we go to a new place AJ notices everything.  Things she recognizes, things out of place and things that are new.  I often find her asking questions about things I did not even notice, because I just automatically screen them out.  It makes it easier for me to focus on the things that 'matter'.  Ayden Jane does not seem to have that ability.  Well, right away anyhow.  She just has to get through her survey and get comfortable with things and then she can focus on the task at hand with no trouble.

Then there is wanting to know the details of how we arrived at every decision.  Why did we buy that bag of dog food?  Because the bag is blue?  Because it is their favorite?  Why did you pick that size?  Because we have 2 dogs so that's how much we need?  Why did we go to this store... Why are we having spaghetti (don't worry, AJ eats quinoa for noodles) for supper?  How do you make it?  Why is the sauce this color?  What would it taste like if it were purple?  The concept of a 'decision' just being a simple choice with no big reason behind it escapes her.  As I write this the computer 'dinged' to tell me I had a new email.  Ayden Jane asked what that noise meant.  I told her I got a new email.  She asked what was it about?  I told her somebody wanted to sell me something I don't need.  She had to know what?  I told her raspberry ketones. She wanted to know what they were......  Conversation ended with I don't know any more so you have to stop asking questions. Her answer?  Why don't you know any more, your big? (pause)  I know, all done talking about it.

Some of it is obsessive something, but some of it is honestly wanting to know.  She remembers the answers (of course, that doesn't mean she doesn't ask again) and is tuned in.

I guess, I wonder sometimes if it is exhausting for her.  I like quiet and space and can't imagine what it would be like if the world were sort of always one volume LOUD.  She handles it well and, as long as she can talk to herself she can get lost in play.  She doesn't seem to have attention issues as far as she can start and finish a project but I wonder what it would be like to HAVE to be tuned into everything all at the same time.  No wonder the kid needs a ton of hugs and to talk through things during the day.

Wednesday, July 4, 2012

4th of July!

We had a great day today.  We took Ayden Jane over to the island for the annual parade.  We set up camp about 9:30 for the parade which came by us closer to 11.  We were prepared with snacks and toys so Ayden Jane had a great time.  She loved the parade as it came by and she was so funny as they threw stuff to her.  The candy she collected to give to Mckenna later.  Some of the floats threw things like strings of beads or little bracelets.  Ayden Jane was so excited that they thought of her and passed out some things that weren't sugar!  Hilarious.  "Mom, how did they know I can't eat the sugar candy?  They were so nice to throw beads to me!"

Next it was over to the beach.  We played in the ocean with the rest of the entire local population until about 2:30.  That was one long day in 90 something heat for a 4 year old!.  After a rest at home it was on to grandma and grandpa's for a cook out followed by a dip in the pool.  Home by 8:30 and asleep by 9:30.  No fireworks this year, but there is always next year!

Great day.  

Monday, July 2, 2012

Honorary Degree

I have started to look into returning to work.  Our bank account desperately needs it to happen!  One thing that has struck me as I have started to look is that I have learned soooo much over the past 4 years, but there is no way to tap into that 'professionally'.

I mean, I am a certified elementary teacher with some added special education endorsement.  So, you would think that I could just step right back into the teaching world and move on.  Instead, I find myself way more interested in early intervention, sensory issues with kids, autism ....  Even wanting to support families that need to find resources and navigate the medical/insurance/therapy/nutrition world.

I quickly realized though, that while I was caring for Ayden Jane and doing what I could, things sort of went on without me.  Not majorly, just in little ways.  Staff changed to new people, processes changed, technology, requirements...

It all has left me feeling a bit like I have learned ridiculous amounts during all this time, but have no way to use it.  I mean, parent of a special needs child with a rare genetic disorder might attract some attention on your resume, but not likely the sort you want!  It was the 'choice' of our family for me to just dive in and do for Ayden Jane.  Gary took over working all he could to pay the bills.  Other families do not have that choice and I know it is a blessing.

I just feel like those of us that have survived this world and even thrived in it should get some sort of honorary degree or something.  Not sure what it would be called, but along the way the courses have included introductions to genetics, nutrition, PT, OT, ST, sensory processing disorders, autism, navigating insurance, acquiring services, developing a medical team, endocrinology, IEP's, maintaining a marriage through stress, raising siblings of a special needs child, and oh so many other things.

So, to all of us who are working on our honorary degree great job!