Adjusting to Life

Adjusting to a new normal takes plenty of time. Sorry I have not been keeping up as much as I should.

Yesterday was a really rough day for me. Not only was it a long day with 4 appointments but it was a trying day as well.

First stop was the dentist - this was Zachary's 2nd trip to the dentist. The first one 6 months ago he completely shut down and didn't regain himself until we were out of the office. This time they sent him back into another waiting area that he could hear and see all that was going on, I was prepared for a disaster. He shut down, the hygienist came and got us (it was the same one as before) and he warmed up a bit. She took us into a room instead of being in the open (they have an area that is chair after chair of kids getting their teeth cleaned) She told me it was because of his issues they will continue to put him in a room so we don't have such sever shut downs. Zach was such a big boy - he sat in the chair all by himself, he let Amy clean his teeth, he had no shut downs! This is huge for him - I was so very proud!

Then we came home and his new SLP came to the house for ST. We met her on Friday for an evaluation and I have to say I was less then impressed. At first I liked her and then she opened her mouth about him having a feeding tube and it was down hill from there. She told me she didn't "like when parents choose to place g-tubes and take the easy way out". No placement is elective - this isn't plastic surgery -- I didn't chose this for my son - it chose us and if he didn't have it he may end up dead. Well anyway I thought I'll give her one chance and see with a therapy session --- it was awful! She told me there is no such thing as a "true apraxic child" and that the only true apraxics are stroke victims. -- That isn't even true because what a stroke victim has is aphasia. She went on to say many other things that really rubbed me the wrong way. Needless to say I called EI today and switched back to our old therapy place.

Then we headed out the door to the GI where we got a little bit of good news --- Zach has gained some weight (2lbs) this is HUGE in 6 weeks 2 lbs he has never gained that much in such a short period of time. The bad news came as the Dr admitted he and his colleagues may be stupid because they have yet to find out what is wrong with Zachary. He believes that Zach's tube may be a life long thing now. I have to say as Kori told me "that is a mighty big pill to swallow" Yep she is right. Doug and I knew this would be long term but life long wasn't on our minds.

Even the Dr will tell you Zachary is a completely different child since his tube was placed. He is the most normal he has ever been his whole life. He said at this point we don't want to chance things getting worse again, if we had not placed the tube he believes Zach may have ended up dead. He is wondering a whole lot of things...maybe this is sever food allergy related, maybe it is a metabolic disorder we tested for and the test came back with the wrong info, maybe we haven't tested for something yet because it hasn't come to mind, maybe Zach is the first person to have whatever it is he has. Our GI was happy to hear we are still following up with the geneticist, he is going to have a talk with her himself to follow up and see what they can brainstorm together.

After our stop with GI our wonderful dietitian came in. She had the look of amazement on her face as she watched Zach for the first time ever playing around the room. She just couldn't believe this is the same kid she has been working with for 9 months. We didn't need to do much - no extra feeds or calories because he is gaining. Just learning to bolus without our pump to see if he can tolerate it. I also have to add some bolus water because he is not getting his fluids since his oral intake is down.

So see --- long day really not too bad of a day but not as good as it could be.

Can't Believe A Full Week.....

Has gone by.......

I'm back in a quiet spot lately.

Thanksgiving was good. I cooked the whole meal for our family.

Zach of course didn't eat much. What a difference from last year when he ate 2 plates of food. This year I filled his plate with a spoonful of everything and I think he may have eaten a bite or two of turkey, a green bean or two, and maybe one bite of mashed potatoes.

It is getting harder and harder for me to watch Zach around food. He just doesn't want to eat orally. He used to go thew a half gallon of rice milk in a day and now I've been lucky to get him to have one cup a day. Just this morning I gave him 1/4 of a cup of Cheerios (something he used to love) and he ate 10-15 cheerios, handed me the bowl, and said "all dum"

I'm so frustrated!

Last week I took him to see his pediatrician and told her according to his neurologist he had lost weight -- since she had seen him the week before she said "this will be easy enough to see if it is true" took him out to the scale and weighed him...........sure enough he had lost weight according to her scale as well........about a pound and a half of weight! Zach doesn't have weight to loose like this. The lack of oral eating is too much!

I called his dietitian today - we have an appointment for next week but she feels he needs to be seen this week instead. Right now she is trying to coordinate with the GI. She is also getting him in with in the next week to see a feeding therapist.

Zach is doing good regardless of the weight loss. His smile is still there, his energy is great. I wish I could take a lesson away from Zach and always be so positive!

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