The Good, The Bad, and The Gross

The Good: I took Zach to see his neurologist today and the good news is we don't "have" to see him unless we need to see him - as in if Zach has anymore seizure like activity. He basically said yes Zach has some neurological issues but they aren't issues we can do anything about.

The Bad: At the appointment Zach lost weight, over a pound to be exact AND they weighed him with fully clothed minus the shoes, a wet diaper, and his backpack for his feeding. Because of the backpack she minus the weight she got with it on from how much the backpack actually weighs and came up with 22lbs. I'm not surprised and I'm trying not to worry too much over it -- any scale can give you a different weight. I'm just counting down the days till we are back at the GI for a accurate measurement. December 8th here we come...........

The Gross: 11 o'clock feed today ---- not tolerated, at all UGH he was in pain and then afterwards started coughing and yuck, next thing I know he vomited all over himself and his crib (he was getting ready for a nap) Poor little man, he started crying, pointing, and saying "mom-meeeeeee ewe" I've changed the sheets and his clothes now he is resting peacefully.

So there it is The Good, The Bad, and The Gross of Monday November 24th 2008.

Add A New....

Doctor to our list................

UGH
So the other day I was changing Zach and I noticed his legs were different lengths. I thought to myself "nope I'm wrong, this isn't right" so I did what any mom would do and looked at him for the next hour. Moving him into different positions and finally getting out the measuring tape to check yet again. I was right - his legs are different lengths.

We then went to PT and I asked if Ms Patty could look him over and remeasure so she did and she came up with the same thing -- different leg lengths.

I took him to his pediatrician this morning to have her do a triple check and she too said "hum different lengths, this is new"

Tomorrow morning I am taking him to the hospital for another bone scan. On December 2nd I am taking him to see the orthopedic surgeon. Hopefully this is something that just needs to be watched and won't cause any problems.

This is yet another sign of RSS.......asymmetry in limbs.

Update

Zach had his ABR done on Thursday and it has taken me too long to get on with an update. It went perfect - well not perfect - but wonderful!

First the meds they gave him caused some problems, they were given to him threw his tubie and I believe they caused some pain. Zach was falling asleep, his eyes were at least shut but he was thrashing around in my arms, screaming as if in pain. We don't know what it was -I believe it was some sort of reaction to the medication - but have no real proof of that.

Other then that (which was our only setback) Zach did superb! The audiologist told me that his ABR pictures were the most beautiful she'd seen in months - this of course means his hearing is normal. His speech issues without a doubt are 100% because his brain isn't wired quite right - he is Apraxic - this is fine by me - he hears perfect - this is such a relief!

We also saw his dietitian and she did not need to increase his feeds because he.......................................................................................................................GAINED weight! In the 2 1/2 weeks of being tube feed my little man gained 1lb 4oz this is HUGE!!!!! We were very worried he would at the very least have stayed the same weight if not that he would have lost weight because he is eating very little by mouth. She did need to change the amount of time he is on his pump -- he is still doing 4 feeds during the day 3 of which are an hour, but his forth feed will now be 2 hours because he is not tolerating the last feed. We go back in 3 weeks to make sure all is still going well.

Busy Busy...Life Never Stops

I'm in a tad of a funk lately.

Zach is doing okay - he isn't tolerating his feeds very well and at this point he is about 90-95% dependent on his tubie -- meaning he isn't taking much orally these days.
We go to the dietitian tomorrow to increase his feedings and talk about what the next step will be with how much and how long they will be.

Tomorrow is a BIG day as well - Zachary is also having an ABR ran http://www.hearingcenter.com/services/abr.html because of his age he will be put to sleep and the test should take about 2 + hours. The good news is that we will have the results right after he is done - so no worrying like with all the other tests we've been threw.

Busy.....Busy ------ I wish life wasn't going by in the blink of my eye!

Please Help

When Zach was 18 months old we knew something wasn't right with his ability to communicate as he could only make very few sounds. At that point we had a wonderful SLP who believed he had Apraxia.

It wasn't until 2 months ago (just shy of Zach turning 2) that he received his official diagnosis from a developmental pediatrician - he indeed has "Childhood Apraxia of Speech"

No one can tell us why he has Apraxia. No one can tell us if or when it will get better and when Zach will be able to communicate verbally 100% of the time.

Zach has been in ST for over 6 months now and is making progress but for every step forward he takes steps backwards too.

We know that Apraxia is a neurological issue but without many people having knowledge that Apraxia exists there isn't much being done to help these children to learn why it is happening and how to fix it.

Please you can help by donating or spreading the word around about Apraxia.

http://www.apraxia-kids.org/stars/zacharyszilagyi

Please forward this link to everyone you know! The more people who become aware of Apraxia, the more of a voice these children will have!!!

Thank you!
~Sophie

ER Visit

Last night was the most awful night of my life!

Zach was fussing at 10 pm so I went in to check on him -- he was wrapped in his extension to his pump - so I lifted him out of his crib as I did so he started screaming and squirming. I went to move him slightly so I could help and as I did..........POP - out came his brand new button, with a full balloon (the balloon is what holds the button in place).
I screamed for Doug and I'm so thankful he is calm in a crisis - I ran to get the emergency supplies while he tried to calm Zachary. When I found them - Doug was the hero, the one who was able to stick the catheter in place. As soon as that was done it was off for the ER at our Children's Hospital.

Our experience there was awful! We were sent home without even a real look at Zach's stoma. They told us to call our surgeon in the morning...................UGH

SO the morning came and I called our Dr who said come in ASAP. We got there just in the nick of time because the catheter that we put in place balloon had dissipated. Lucky Zach's surgeon was able to get another button put in. He sent us over to the Children's Hospital (the clinic and hospital are attached) for a test to be done STAT and said "if this shows anything I will take him in for an emergency surgery" Thankfully the test was all clear and as the Dr put it "we dodged a bullet this time"

For now there will be no more night time feeds as Zach moves too much and this will likely happen again if we continue with the feeds overnight. Zach will now have 4 feeds during the day - hopefully soon we will be able to get them where they will only be an hour each, but we need to move slowly to see if he can tolerate them.

What a night and a day it has been!

Day Time Feed

10 O'clock Feed

Zachary is doing GREAT!

These are pics of him yesterday at his morning feed - I told him it was time to eat and he climbed on the couch and lifted his shirt so I could hook him up.

I put on a movie for him and he fell asleep within 5 minutes of his pump starting.

Afterwards, I have to flush his extension with H2O in a syringe....I don't do it anymore - he is such a big boy he does it himself ;-)

I'm so relieved he has taken to his tubie so well!