Bad Day

How does life go from a great day to a bad day more times then not?

Today was supposed to be filled with joy -- it was Zoe's last day of VPK and they had a big party for the students and parents. Tonight is a VPK graduation ceremony.

As I was leaving the house to go to her party, I received a phone call. It was our pediatrician calling on a blood test Zachary just had done on Friday. They told me I needed to come in ASAP today and talk with the Dr. We decided I would come in after therapy at 2:30 since they are right across the parking lot from one another. After that call my day went down hill. I knew it wasn't good news, if I needed to come in. Zach and I went to the party and I put a smile on my face for Zoe.

On our way home I couldn't wait any longer to know what was going on, so I called and they said come in now.

YEP bad news - his IGF-1 is low. What is was told is that he will basically need GH (growth hormone) but I need to take him to the endocrinologist. While we were there I had a chance to bring up some other problems that have been getting worse for Zachary and she has decided to give us a referral to the Genetics department as well. - She was going to do this anyway but figured now is the best time.

I was told that we simply need more brain power to help fix Zachary and that all of these specialist and her are going to need to pull together to help our little Zach.

It hurts so bad - as always, we've known there were issues going on and as happy as I should be because we are gaining some knowledge of all of them - I'm numb, I'm in a weird denial, and my body aches to its core. This is part of my Life's Struggles and progress rolled into one ball.

Week 7: and we've got some PROGRESS

Today Zach only had an hour of OT. Ms. Kristin was out because it was her son's first birthday - but we will see her tomorrow.

Zach was challenged as usual by Ms. Jerri-Anne....

The room was all set up when we got there with obstacles, that would make Zach use his arms (he has low muscle tone in his arms = really bad strength) and he does not like using them, really thinking back never really did. It was also there to challenge his balance. He played for what seemed like forever on this coarse - giving up over and over because, he had no balance, and he couldn't use just his legs. He was so frustrated because he would stand up, and lose his balance. Ms. Jerri would make him craw and he be frustrated because he has no strength and he would still lose his balance. All in all I think he had fun with it, well for the most part - there weren't too many times where his face went blank or gave a bad look, just plenty of giving up and trying to walk away from it.

From there Zoe and Zach got to sit on the platform swing. This was to also do balance work. I think he did better because Zoe was on it with him. He had a lot of blank looks towards the ground, but was able to stick with it even though he would fall backwards losing his balance from time to time. Ms. Jerry left him in control and when he had too much and started getting off she let this activity end.

On to the most fun Zoe has had at a session with her little brother..........Finger Painting! OH MAN, I had no clue how this was going to work - first step was to get him to put a plastic smock over his shirt - he ran all over the room screaming, and crying, shacking his little head no. It got to the point where I tried to put it on myself and then Zoe to show him it was okay - still nothing, Ms Jerri finally said let's just take his shirt off. We did and he was fine, well, my kid loves to be naked so it was perfect for him. Zoe had her own paper and did her own painting at the same table as Zach. Zach, cooperated because Zoe was doing it - had she not been there I don't think finger painting would have lasted too long. His poor little face if you could only have seen it when Ms. Jerri held his hand and poked his finger into the paint - it broke my heart. He finally got used to it, but then came time for the whole hand - poor Zach all he kept trying to say was "dirty" which for him comes out "deedee" and him trying to pull his hands from Ms. Jerri to sign it so we knew what he was saying, over and over and over and over - do you get the point? It ended up in almost tears and even after he was all cleaned up we had to hide the towels used to clean him because he can't stand "deedee" insert sign here.

The last thing we were going to work on was eye contact....This was miserable! Zachary loves balls so we decided we were going to play ball. In the room there was a plastic blue ball, thing is this ball has little rounded spikes on it. Normally Zach will play with this ball on his own when we are in a room. I'm no expert here, but maybe all the touch of the paint was throwing him off (since the ball had texture to it). He wanted nothing to do with the ball. We tried and he threw it once - with no eye contact. In fact almost the whole session there was NO eye contact. Ms. Jerri tried to throw the ball to him to bump his shoulder, it hit his face -
gently - and we lost him, took about a split second and the tears came, no movement. That was the end of the ball, he was mad - Ms. Jerri gave it to him and told him he could get rid of it - he took it across the room and hid it under something. Yep he really was mad ;-)

To help him feel better we ended on shape sorting. Zachary sat in Ms. Jerri's lap where he was able to concentrate better. He did a good job - after one shape fit into a hole, he would automatically take a different shape to the same hole. You know if one goes there, they all must ;-)

When we left - he very clearly said to Ms. Marla (in the office), with out any prompting, what so ever --- "buh-bye" as clear as day 2 different vowel sounds!!!! My little man has a word - Ms Kristin would have been so proud! I know Mommy was and to think NO PROMPTING - just a little wave from Zach and a clear "buh-bye"

AND there we have it PROGRESS!!!!!!!!!!!!!!!!!!!!!!!!

"BUH-BYE" :-)

Fun Weekend...

This weekend was great!

We had a lot of fun family time....

Saturday morning Doug took care of the kids so I could veg. In the afternoon I had the pleasure of taking Zoe, while Doug stayed home with Zach (OHHH so nice) to her friend Emily's birthday party. She had a BLAST and it was great to have one on one time with her - well, at least in the car. It was good for me to, to be around my friends and have good adult convrosations! Afterwards we stopped and went shopping - even better Mommy daughter bonding time :-) Then it was home to the boys and Doug BBQed dinner, it was great. We even ended up having family movie night - it started out us watching Gremlins (oops forgot how scary it got) and ended up My Little Pony.

Sunday was BEACH day -- we all had a blast! We got there about 10am and stayed until almost 1pm. Zach is napping (has been since we got home and it is 4:15pm now)- his crib is probably all sand. Zoe has had lunch, snack, and is still full of energy.

I love watching the kids with smiles on there faces - this weekend allowed plenty of that!

Friday, Already?!?!

I can't believe how fast this week has flown by!

Today is a somewhat relaxing day - Doug took Zoe to school for me, so it is just Zach and I until we need to pick her up. So far it has really just been me - as Zach has decided to sleep in (it is already 9am).

Zach has to have his blood work done today - my fingers are crossed for him and I'm already doing some deep breathing as it is always hard to watch him shut off.

I was looking at my calendar for the rest of this month and I can't believe how busy (as if we are ever NOT busy) we will be.... Next week is Zoe's last day of school on Wednesday - she has a party that we can all attend and then at night a graduation ceremony, and her 2 days of dance. Of course Zach has his 3 days of therapy, and Thursday is his ultrasound. Saturday is photo day for Zoe's dance academy - which stinks because it will be a whole day down the drain - pictures at 10:15, 11:00, and 1:30. The following week will be Zach's 2 other tests, 3 days of therapy, Zoe's 2 days of dance, and hopefully a nice relaxing weekend before the following week. The week of the 23rd is HELL week AKA recital week - on top of 3 days of therapy I will be lugging Zoe all over town Monday she has practice from 5:30-8:30pm, Thursday from 5:30-7pm, Friday from 5:30-9:30pm, and Saturday is the recital we have to be there at 3:30, curtain isn't until 5:00 YIKES I'm tired just typing about the rest of the month ;-)

Week 6 - Continued...

ST went really well today.

Zach was doing good with his sounds and instead of Ms. Kristin having to simplify his words he was doing it for her - for example she grabbed a "duck" out of the box and told Zach "This is a duck. You say duck." Zach grabbed it out of her hand and said "du" Just yesterday Ms. Kristin was the one simplifying the word.

They also played a game with different animal magnets - he would grab one and she would tell him what it was and he had to attempt to say either its name or the sound it would make before he could move on. When he was all done he had to hand them back to her and tell her again either the name or the sound - he needed much help with this! It kind of went like this; he has a pig, Ms Kristin tells him "O" (because he can't say pig or oink) he gets the "O" sound out, he gets to put it in the box, he then grabs another animal and Ms Kristin says "what is that?" he says "O" --- in other words he was stuck and his brain couldn't switch gears - she would tell him what it was or a sound and then he could do it but the next one he would hand her he would always tell her it was the animal from right before. Zach does a lot of getting stuck.

The other thing I noticed today was more issues with his motor planning. Today when our session was done Zach (as always) had to help clean up, but today he wanted to throw the toys in the box as he was trying to do this his arm would be bent like he was going to throw and it would take a couple small arm movements before his brain was allowing him to let his arm finish the movement and allow his had to release the toy. I could see the frustration on his face - it really does break my heart! I will be bring this up to Ms. Jerry-Anne this afternoon at OT.

Slowly....(Week 6)

Falling behind with blogging, I really need to get back into the swing of things.

So far this week has been great with therapy, really no new news to report. Zach is doing good and I believe adding the sensory diet elements are really helping him (more then I thought they would).

I tried to contact the DP's office today and found out that they have taken his uptake out of their file which means that the scheduler has created a chart and we are waiting on an appointment date. The scheduler was out of the office today so I was told to call back in the morning and more then likely we will know when Zach will be seen at that point. YEAH -- now I'm keeping my finger's crossed it won't be when he is having any of these other tests done.

Progress - it has happened in many different ways over the past 6 weeks - Life's Struggles are seeing some sunshine right now!

All About Monday

My in-laws are in town so I've found it very hard to get on here the past couple of days.
Catch up: Our weekend was fun and everyone was healthy!

Now for Monday...
Zachary had an appointment with the GI and the Nutritionist. It was a good office (we see one of the other GI's for Zoe there as well) but this was the first time I walked in and they took us right back. Zach weight in at 19lbs 11.4oz the first time and was re-weighed by the Dr after he had eaten a little and was at 20lbs 4oz. His height was 31in.

The preliminary results were in from the UGI and the conclusion says "Delayed gastric emptying due to pylorospasm. No other significant findings are noted" The Dr was rather worried about this but said "it could be a real problem or be from an infection" Only thing is all the blood test that Zach has had done lately show NO sign of an infection. Dr Evan's didn't want to discuss treatment until we know 100% if it is a problem since he said "treatment can be pretty rough and I don't want to put anymore worry on you until we know for sure".

Of course being the nut I am and having reports in hand I Googled and found info on what the UGI was indicating the problem to be - here are 2 links.....

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/index.htm

http://wwwp.medtronic.com/Newsroom/LinkedItemDetails.do?itemId=1101836121811&itemType=fact_sheet&lang=en_US

Because we need to find out 100%, we are at "Plan A". Zach is having a series of lab tests run (blood work and urine), an ultrasound abdomen complete (6/12), a nuclear medicine emptying scan (6/18), and an upper GI endoscopy with biopsy (6/17). Dr Evan's didn't want to overwhelm us with testing -HA - sure sounds like a lot to me -- but there is a "Plan B", he wouldn't even head there with me yet.
Not only is the Dr concerned with the possibility of the delay in emptying but all of Zach's symptoms are characteristics of Celiacs Disease - so the biopsy will determine if that is playing a factor into Zach's problems as well it will also be able to detect if Zach has any other food allergies affecting him that his regular allergy tests aren't coming up with.

The Nutritionist, um, well, yeah, I found her to be a waste of time. I think she will be a wealth of information if we need to/decide to put Zach on a Gluten Free diet. BUT for now she didn't tell me anything I didn't already know. Even she found it hard to give me ideas because of how sever Zach's milk allergy is (we carry an epi) and most things to help promote weight gain have some form of milk in them. However I did find out that he should be getting 1075 calories a day (which if he doesn't - it is pretty darn close) and 17 grams of protein (which he gets more then that) She was also very shocked at the amount of knowledge I had regarding everything that Zachary is going threw and how this whole time I've been doing the right thing and he just isn't growing.

I'm ending this on --- "WHY is he so small?" both of the issues the GI is suspecting at this point would cause absorption issues which will give us our answers. For right now I know I'm feeding him what he needs and he is still failure to thrive. He will get better - this GI is on it!!!!!!