More Testing

My poor son has been threw the ringer and with even more to come.

The doctors have no clue what is going on with him -- could be anything from major food allergies, to celiac, to crohn's disease, to his GI tract not developing properly, to who knows what!

This blog is about poops....my son has never in his life had a "normal" poop. His whole life he has had diarrhea, or runny, or soft serve type poops.

The first solid poop he has ever had has been on a day where he ate NO food orally and was only receiving his special formula threw his tubie.

Tests: right now we are waiting on 8 stool tests to be run. After that we will be doing and upper endoscope, a lower endoscope, a colonoscopy, along with multiple biopsies. His allergists is running another set of blood work for food allergies, skin testing for food allergies, and also patch testing for food allergies, along with more immune system testing.

The poor kid has already had the majority of these tests done in the past. So, you ask the reason for running them again -- the reason is because just because they come back fine one time doesn't mean his body couldn't have changed. UGH - just another one of Zach's Life's Struggles!

Friday, Monday, Tuesday

Well I'll start with last Friday....

Last Friday was going to be a good day - I need a good day, but it wasn't.
Last Friday was a weight check with Zachary's dietitian.
Last Friday I was convinced my son had gained more weight.
Last Friday I was disappointed.
Last Friday I found out that Zach is six weeks had only gained 1 and a 1/2 ounces.
Last Friday the good news was he had gained about an inch in height.
Last Friday I heard "good he gained a little height but not so good on the weight. With the amount of height he had grown she said there should have been more weight gain".
Last Friday my son's calorie intake from his tubie went from 60%-80%.
Last Friday the Dr wasn't there to talk to.
Last Friday we really needed the Doctor to be in his office.
Last Friday I realized my son isn't doing as well as I had hoped for. Zach is sick and we don't know why.

Monday came and right at 9am the phone rings - our dietitian was able to speak with our doctor.
On Monday I heard he needs to be seen this week ASAP.
On Monday I was told my son will undergo more tests, more biopsies.
On Monday I was sad.

Today is Tuesday and it was our first meeting to transition Zachary from EI to ESE.
Today, Tuesday was a better day then I thought it would be.
Today, Tuesday I found out we need to wait to get into a summer clinic for more evaluations to be done on Zach to determine service he will receive.
Today, Tuesday I have hope for Zach's future - that myself and my husband have found a good set of people to help our son get the most out of his education that he can.
Today, Tuesday I have hope one day we will mainstream our son.

Tomorrow is another day - hopefully a good one!

Bad Day

Today was a bad therapy day.

OT was going along fine and it was time to try something new....

It was a new swing, but instead of sitting on it, you hold on and lift up your legs. Zach was willing to try it with his feet on the ground swinging the swing with his arms and swaying forward a little. Ms Jerry wanted him to do more so she began lifting him off the ground, he did not like it! He immediately started shutting down. Next thing I knew she was trying to get him to get words out and he was shaking, then the tears came, then he leaned into hug her but it was a hug like "don't make me do that I'm not letting go" She continued to try to get him to use his words telling him it is okay to say "stop" or "no" but the kid couldn't do it!

Zach stood shaking, his mouth groping to get a sound out, and tears falling drop by drop from his eyes, rolling to the ground.

It was awful - the struggle he had. The moment was one I'd like to forget.

It was so bad, Mommy started crying and had to leave the room.

There are plenty of experiences that I don't want to have in my life. Watching my kid struggle for little things like talking to say "stop" and not being able to do what his peers do is one of those awful experiences that - well, it was an experience I never wanted to deal with. Somehow I manage to find the strength to help him and for that I am thankful!

Heartbroken

Wow I've been really bad with keeping up with my blog lately. I guess that is what having one kid out of school will do to a Mom ;-)

Happy New Year everyone -- a week late.

Zoe is back in school and happy to be there. Doug is back at work from his nice mini vacation because of how the holidays fell. Zach and Mom are slowly getting back into their weekly routine after being out of therapy for 2 weeks.

Today I'm a little divided on 2 topics one is about a new puppy and the other is of course about who this blog was intended to be written about. So I will stick with the other....

It is that old saying "One step forward two steps back" Except right now I'm feeling like we are falling behind by leaps and bounds. Over Zach's 2 week break from therapy he had some good days and he had some bad days. He is doing better with his talking but much much worse with his SPD.

Today at therapy his OT told me "I would really like to write a book about Zachary, to help other therapists deal with other children like him."

I don't know how to take that. I would not be opposed to a book being written about my son to help other children.

I am a little heartbroken - from those words I took - "Your son has a lot of issues"

Of course I also got - "You son can help others"

I don't know right now.

Holiday Catch Up

My Mom was in town so I had little time on the computer to blog.
This entry will be my catch up blog..........

Dec 21 2008 ---- For the first time EVER my little man was able to sit himself up from a laying position. Until this day he has always had to roll all of the way onto his tummy and then push up to sit. I was changing his diaper and he wanted up, he rolled part way to his side and used his arms to push up, twist and he was sitting! This is such wonderful news - this is showing us he is gaining muscle strength. He has yet to sit straight up -- BUT it is coming!!!!!!

Dec 24 2008 ---- Christmas Eve -- we headed to dinner at the in-laws new home. It was very yummy! Next stop, we all piled into the van and headed to the Christmas Eve train. Zach didn't know what to think at first his SPD kicked in and when the train started moving he had to close his eyes. I believe it was a combination of the movement, noise, and many people. I talked to him while his eyes were shut and explained what was going on, slowly he would open his eyes for a few seconds at a time. It got to the point where he kept them open and even waved to people as we passed by. Again even more wonderful news about Zachary!!!

Dec 25 2008 ---- Christmas Day -- What a fun day! Our family stayed in our jammies all day, I have to say this was the most relaxed day we have had in a while. Zoe had to help Zach with his presents at first but he quickly got a hang of it - shredding the paper into such small pieces. As soon as one present was opened he would quietly ask "mo?" and move on to another one.

Our holidays so far have been wonderful and filled with so much positive on the Zachary front.
I hope that all of your holidays going just as well!!!

Maybe Some Positive

I received a call yesterday from our insurance company and "supposedly" we have received not one but 2 exceptions of benefits. We have also been given another case manager - thank goodness for formal complaints!

1. Formula paid after detectable is met up to $2000 for the year ----- here is my sarcastic note for that -- thanks, but this in NOT a big deal NOR is it a triumph for us. The last bill I received for formula (one month worth) was for $1400. That $2000 will get us NO WHERE!!!!

2. They have decided after we meet our $2000 DME limit they will continue to pay for all of our DME. --- The problem here, we STILL do not know what is covered under DME

I was told we will have a formal letter in our hands by next week.......we'll see. I do not believe any of this until I see it in writing.

Newest Evaluation

These are the scores Zach got from his evaluation with the SLP that came to our home.

Receptive Language: 15 month old
Expressive Language: 12 month old
Total Language: 14 month old
Zach's Real Age: 27 Months old
13 Month difference YIKES

I would beg to differ with the receptive language score, so would his other therapist that he sees.
Anyway these are his newest scores.
Feels lousy to read them but hey they are better then when he started ST 19 months ago so I guess there is a positive.