There was an error in this gadget

Thursday, October 29, 2009

It's Buzz


This picture was taken in Zach's classroom today. Just wanted to share. I know I will have many more Halloween pictures of both the kids come Saturday.

Wednesday, October 28, 2009

Zach in Action

This was Zach in action today during Fall Centers. He seemed to have a lot of fun with the pumpkin painting -- Thanks Ms. Tara!

Yesterday 10/27/09 Another Day Another Appointment

AND of course new news......

Yesterday was Zach's follow up with his ENT. It had been close to 6 months since we had seen the ENT and at that point Zach's tubes were on the way out of his ears so with this appointment Zach had to have his hearing tested. In the past he had major issues with his hearing where he was losing it....this was before his tubes. With all his speech issues our ENT will continue to check his hearing on a regular basis.

First stop audiologist, I am very happy to report his hearing checked out just fine!

Then it was onto the ENT. The appointment proved too much for Zach with too many people in the room (our ENT had an intern shadowing him + his nurse who always comes in). Zach would not talk. The ENT checked his ears and the tubes were still just hanging out in his ear canal. They at this point were serving no purpose so out they came.....no complaints from Zach and a "WOW you are a good kid!" from the doctor.

I was able to bring up something our SLP has been wanting me to ask about - Zach's speech has become very nasally sounding, too much air is getting in as he makes most letter sounds. This was a challenge for the ENT because Zach wouldn't talk and he needed to hear his voice to tell me if this is what he does or does not have. Thank goodness for the amazing nurse who was really good at bribing Zachary into talking - just a couple words for her. The doctor was typing away on the computer and ignoring Zach so he would continue to talk. After some words came out the doctor spun around and said Zach has Velopharyngeal Dysfunction: http://www.cincinnatichildrens.org/svc/alpha/v/vpi/about/vpi.htm
For now we must watch it, as he is too young for the surgery to repair it - but chances are he will get the surgery at some point. The ENT said "Speech therapy, speech therapy, speech therapy! The more the better at this point - it can't hurt and now we know he has VP, we can hope the ST will help to repair it"

So there it is, another appointment and of course, as always.....something new in our lives to contend with. I just wish all these diagnosis we have would add up to one thing so we know what is going on. I was told to make sure we let our geneticist know about this one.

Four months and we will be back in the ENT's office following up on Zach's new found diagnosis. AHHHH more appointments JOY! (yes this is sarcasm ;-)

Monday, October 26, 2009

The Side By Side

Morning of Surgery 10/23/08Six Months Later 4/23/09
One Year Later 10/23/09
I know the last picture isn't the best....Zach did not want his picture taken (at all) BUT it still shows how much he has grown ;-)
Have I said it lately --- I LOVE his TUBE!!!! - Zach too of course.

Friday, October 23, 2009

WOW Time Flies!

I totally forgot that it has been one year today since Zach's g-tube was placed.
Here are some pictures from a year ago....when he gets home from school I must get updates so I can place them side by side. WOW a YEAR -- really, a year, SO soon!

The Morning of the surgery 10/23/08 - this is where it will go Waiting with Daddy @ the children's hospital
The worry right after surgery...Mommy & Daddy will never forget about this moment (picture or not) - they were not so sure how I was going to make it because I could not keep my O2 at a stable level.....Mommy & Daddy waited for over an hour after my surgery was over and then were called back because the nurses in recovery wanted to see if having Mommy & Daddy with me would help me (everyone was worried and on needles waiting to see what would happen)........THANKFULLY it did, but I still need help for the next day and a half with the help of oxygen directly into my nose.
Resting with some heavy duty pain meds
Resting with the help of oxygen - I could not keep my O2 up for the first day and a half
My first feed

Life's Challenges

Sometimes life throws challenges our way and we don't know why....sometimes inside those challenges may lie great rewards - if only we are patient and wait while the world spins around us.
Right now a new (not really so new, just becoming more so) challenge for Zachary is the inability to talk when his anxiety gets too much.
His day was very stressful yesterday but little man survived - he is strong!
Here is his day in pictures...

I was so close to talking but my mouth wouldn't move. Mommy was happy because at least I got close to the fireman.I got to sit in the firetruck - but I had no words. Mommy knew I was happy inside.
The fireman helped me out of the window when the smoke filled the house. Mommy said I was brave even without my words.
This is Mrs. Debbie - she had to hold me because I didn't want to be there. I couldn't talk and had to leave my Mommy so she could take pictures of all my friends and I.
We do lots of work at school - this is my H bookFor Zach, yesterday was a challenge one he overcame throughout his day. Yesterday was fire safety day at school. Zach did not want to take part in it but he did and later that day came back to himself. Until a surprise fire drill alarm rang at the very end of the school day. He was quiet when he got home, but quickly came back.

Wednesday, October 21, 2009

So Much Going On Around Us

AHHHH it has been a whirlwind lately.

We changed Zach's IEP - this is good and I'm happy with the added goals. We've changed Zach's feeds at school and the past 2 days he has decided he'd rather be quiet. What we are left to figure out was the feeding schedule enough to throw off his SPD and put him into his minor shut down mode OR is this something more. We've had some issues with his gastroparesis flaring this past weekend - YUCK the mess in the middle of the night is never fun! I was thankful it had been so long we'd forgot - guess someone thought we needed a reminder of how sick Zach is.

I had a nice long talk yesterday with his new SLP (Ms. Andrea), his OT, and another SLP who works at our therapy place and also our school district. They've come up with a couple different things.....one, let's see how he does the rest of the week.....two, lets get him on a visual schedule while at school....three, is this a possibility he is having issues with selective mutism (http://en.wikipedia.org/wiki/Selective_mutism).... and fourth, if Zach is refusing to talk he must at least acknowledge the person with an eye glance, wave, smile --- something more socially acceptable. We don't know what is going on and I guess this is another moment in life we take a semi lets wait and see stance.

Yesterday Ms. Andrea and I also had a talk about what is going on with Zach from her stand point. He has been showing many more signs of his dyspraxia during his sessions with her, so next week she is going to do another test for apraxia --- it has been a while since one was given. She wants to do it to see just how bad it is right now. He is also having a VERY VERY rough time with his articulation....when we notice and try to fix what was said wrong at home and at therapy - he stops talking for us. This is something we must worry about and something we don't want to happen --- this is where Zach may really be showing signs of selective mutism. Ms. Andrea said that if you take a child like Zach who has the dyspraxia, has the major articulation issues that these kids are the ones more likely to just stop talking altogether simply because they are frustrated and they feel no one understands them anyway. She is also worried about him because of how nasally he sounds and wants that looked at by his ENT.

Next Tuesday we do have a scheduled appointment with his ENT, so that couldn't come at a better time. I know the ENT had said at this appointment Zach must have his hearing checked again. I told Ms. Andrea and she was happy about that because some of his articulation issues can come from not hearing right.

I don't know anymore, I swear if it isn't one thing it is another these days. Heck, if we didn't have the Life's Struggles that we do -- life may be just too boring for us.

Wednesday, October 14, 2009

So Much Going On

Yesterday was Zach's second session with Ms. Andrea. I'm impressed he is doing well with her, he definitely exceeded my expectations with her. She has suggested we go back to adding more ST. If you remember we had to cut time because of school and his old SLP only working 2 days a week - she only had one slot for him. She is going to up his time slowly since he has so much going on with therapy and school. Starting next week we are going up to an hour, then as he proves he can handle it we will keep adding. She is hopeful to get at least 2 hours a week, but really looking at 3-4 hours.
He will still have ST in school as well. I always say the more the better - heck if Zach never had all that he has I know he would not be where he is now!

I really want to thank someone - someone I've never met --- for giving me some information, and leading us to looking more into Zachary's situation. Her name is Elise, I don't know her in person only from the computer BUT I know enough to tell you what an AMAZING person she is! She shared with me her daughter's story and I shared with her Zach's story. Elise has been reading my blog and as she does similarities pop into her head. She brought up Autonomic Dysfunction (or dysautonomia: http://en.wikipedia.org/wiki/Dysautonomia) I had never heard of this before Elise came into my world - she shared this website with me: http://pediatrics.med.nyu.edu/dysautonomia/autonomic-disorders As I read it there were very many similarities almost uncanny to Zach's issues. I went to the pediatrician and had a little chat with her today about this. She agrees that Zachary has many Autonomic symptoms and has decided because of his regression and some other issues really coming into focus that we are going to look more into this as maybe being an official diagnosis. She is contacting our neurologist and the geneticist and we will see them as soon as we can get in.
THANK YOU Elise --- I think you helped to find something we've been searching for -- a possible diagnosis, this is huge! THANK YOU I can not say it enough!!!!!

Not 15 minutes after having this conversation with the pediatrician today....I step in my door and the phone rings....it was Zachary's school nurse who says "Zach fell really hard out of a chair onto the back of his head - he stood up and sat down like nothing happened. He didn't cry until his SLP asked if his head hurt." "Sophie, I don't think he feels any of the pain - and it was clear that it was a very painful fall" ----- She doesn't even know what I'm talking over with the docs. She asked where he hit his head and he points to the front (when nothing hit the front of his head) She said he seems okay - no blood, no bump. She is keeping an eye on him as he won't let her leave him because he has a death grip on her neck. Zach is not crying and he is not talking - he is in a nonverbal state right now. I'm so thankful for his school and the nurse - they are all amazing. OH and so you all know not feeling pain is just one of the symptoms of an Autonomic Disorder - This has been something we've noticed for a very loooong time with Zach but chalked it off to "oh it is just his SPD kicking in again"

I'd just be really happy if life could STOP -- just for a day -- I want a normal kid, just for a little while.
I'm going to stop to breathe for a little while.....I need to stay positive and the positive for this situation is having a new friend come into my life, to give me that push, to bring another idea to the doctors that can't figure out my son. The positive is we may be onto something!

Tuesday, October 13, 2009

IEP Re-Do Take 2

This will be the week (okay maybe I should knock on wood here) that Zach's IEP is rewritten.

Since we couldn't go last week his teacher sent home what she had already written up for him. I went over it and it looked really good. I needed to add and change a couple things but over all it was MUCH, MUCH better then what it started as.

Doug and I will go in on Thursday at 3pm for the meeting. Hopefully this time everyone will stay healthy and the meeting will go smoothly ;-)

Saturday, October 10, 2009

Big News! Exciting News!

My MIL and I started a little company called My Button Buddies (www.mybuttonbuddies.com)

Earlier this week I was contacted by about.com for an interview to be featured in there parenting SN section -- in the enterprising parents, it is a section for moms like me who have a SN child and start businesses to help other families with SN children.

I have to pat MIL and I on the back I'm very proud of us and so far the response about our pads has been wonderful!

Here's the link http://specialchildren.about.com/od/medicalissues/p/ButtonBuddies.htm

Our New Minor Struggle

I'm still really goofy!

Yet Mommy says I look like a smarty pants

The Minor struggle is keeping the glasses on Zach face.....if anyone has any tips I'd love to hear them ;-)


Monday, October 5, 2009

The Stitches Are OUT :)

This morning we took Zach to get his stitches out.

Again I was amazed at what a trooper he is! Daddy sat on the bed with him holding him at his legs and mommy was at the top of the bed holding his head still for the doctor. I'm really not so sure I needed to be doing it. He didn't move not one inch, he didn't cry, he didn't scream, he didn't react to anything.

It reminded Doug and I of the time Zach was in the hospital getting his g-tube placed and the surgeon came in to remove the bumpers from around the button. He just didn't feel anything - or at least that is the was it appears. When the doctor was done he was in udder shock and told Zach "You are one truly amazing unique little boy!"

The pediatrician said she's never had a little one act that way and that this is what happens when SPD is so sever.

As much as I hate the fact Zach's SPD is so sever I guess I have to admit it does has one up - or at least it would seem that way - heck I know I would have been scared but I would have reacted to it, Zach...nope not Zach he goes inside himself. To us that seems so much better but is it really better?!?!

The only thing that was said afterwards was "I no dalk in dool doday" (I no talk in school today) and when we dropped him off sure enough he didn't talk - it was really hard to watch especially as he cried while we left the room. I'm sure he is fine or the phone would have rung already.

Friday, October 2, 2009

IEP Meeting On Hold

I've had to put the re-do if the IEP on hold for the time being....
Zoe got sent home from school early for "flu like" symptoms. I took her to the doctor and she believes it is just her allergies and asthma flaring.
In the mean time her fever has gone up but not by much and I feel more comfortable with her staying home to rest.

Thursday, October 1, 2009

IEP Re-Do

Tomorrow is yet another big day in the life we live.

Zach will go to school, Zoe will go to school. Mommy and Daddy will go on with our day like normal until 2pm when we will pick up Zoe and head over to Zach's school.

Tomorrow is the rewriting of Zach's IEP. I'm feeling pretty good about it. Because it is at 3pm I'm hopeful it won't last 6 hours like the last one did. I'm hopeful all will go well. I'm prepared and like knowing this one is not as formal and more comfortable then the last one.