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Monday, December 29, 2008

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!!!

Wednesday, December 24, 2008

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.

Sunday, December 21, 2008

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.

Flying By

Life sure has been flying by these days!

I have no time on my hands for anything, including trying to find time to get on here and blog.

Seems the only thing I do these days is talk on the phone to multiple people trying to figure out insurance woes or trying to get some type of assistance for when our insurance stops paying for things or speaking with Drs, making appointments ect.

On Friday I talked to CMS 8 different times. Thank God for them because they are wonderful!Every where we've looked we've been turned down because of our financial status but CMS is able to help us, only with our formula but that runs about $1400 a month (yes fourteen hundred no decimals) However, they will not be able to help with the rest of the supplies. I am so very thankful that they can help us with the formula though.

On Friday I also spoke with 2 different people from our stupid insurance company. The problem you ask.....the problem is they are giving us the run around and NOT letting us know what is and is not covered. Our formula which is a prescription (you can not get it over the counter) is NOT a covered benefit, yet you can fight it. So we have and what did we get..............$2000 towards formula for the year AFTER we meet our detectable AND we must pay a co-payment each time ---- how much is that co-payment? I wouldn't know they won't tell me. Obviously that $2000 will not go very far. I'm going to say it again Thank God for CMS! Our insurance is awful! I shouldn't complain, I know, we are so very fortunate to have insurance and a job BUT I can't help and feel the way I do.

The financial burden of Zach's condition is a lot. I pray we will find a way to make everything all right.

As I sit on the phone day in and day out all I know, all I see is the time flying by. I dream of the moment where the phone calls will cease and I can look at life in a new way......a way where it isn't all just flying by.

Tuesday, December 9, 2008

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.

Monday, December 1, 2008

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!