the family

the family

Monday, June 27, 2011


Trying to get back into the blog world, sometimes its just hard to find a spare moment to collect my thoughts. Tonight's post will probably be a bit here and a bit there.

In March we were blessed to have a night nurse who had been with us about a year come on working full time in the daytime for zach, not only is she amazing with zach, but its been so benifical to me as well. She has become Luke a member of the family, a sister. We have so much in common and enjoy our days together, last week she worked 60 hours, including a night shift that was basically a slumber party. It's been so long since I had such a close friend, she reminded me that friendship isn't suppose to be a one way street, and people who are your true friends shouldnt get all bent out of shape so easily, and if they do, they should try to work it out. Anyway I can't say enough good things about Anna, we shop, do projects, cook, do makeup and nails together, like the sister I never had.

Since April I've lost about 15lbs, not an enormous amount but the fact that I haven't gained any back is rewarding. So day by day I'm working on being healthier and happier. Eliminating negativity and trying to reduce stress. Life is stressful enough and throw in special needs kids and it can get crazy. I need my head in the game for sure.

Homeschooling is going great! We aren't doing work every day but rather a few times a week thru the summer, Micheal is making much progress, his handwriting and attention to details is better, math is finally sticking, and he is doing a super job trying. He is working right at grade level for the most part. Chance is also working hard, though he should only be at kindergarten level until fall he is working on 3rd and 4th grade level, his reading and math are his strongest areas, I'm so proud of my boys. We have our hard days but I wouldn't change a thing, leaving the school system was the best thing we did. I love spending my days with them, I love that they learn so many life skills along the way every day. I love that ordinary errands can bring up a whole lesson plan and new learning experienced. I also love that they aren't subjected to ridicule and bullying no peer pressure and they learn to socialize with people of all ages, not just kids in their class.

Next month we go back to Houston to have a vq scan for zach to check his lungs and check for any thoracic dystrophy, after this we should have a plan for surgery to correct the scoliosis, any surgery is scary for zach so I'm just so thankful they are being so cautious with him. I was reading thru his medical file and came across these words, cortical atrophy, hypoxia, HIE, sometimes I hate medical terms, the words I would use would be amazing. Miracle, strong, fighter.

My brain is blank, time for bed got 3 speech therapies tomorrow. Night

Wednesday, June 22, 2011

lots to update

Oh so much time has passed, so much to catch up on. These days I feel like were always rushing, always going, always non stop. Lots of changes have and will be going on here. Lets get down and dig into this already.....

Boys both had parties at chuck e cheese, hard to believe Mikey is 9 and chance is 6! Gosh they are growing so much! Mikey is now 4 ft 3 inches, 61lbs, chance is 4ft 1.5in and 56lbs, so as you see pretty much the same size. :) they are enjoying summer with lots of pool time, we are still doing school time, not daily but atleast 2 times a week. Chance is now reading stage 2 books, both boys are excelling in multiplication and making me very proud.

In addition to occupational therapy 1 time a week, Mikey and chance are both in speech therapy weekly. Luckily they share the same day with zach for speech therapy, so we only drive there 1 time a week.both boys see the psychologist monthly and the developmentalist every 3 months.

zach is doing well, he has his ocupational therapy 2x week, physical therapy 2xweek, speech 1x week,monthly to the psychologist, and every 3 months to the developmentalist. in some areas he seems to be making huge strides and in others we seem to be at the same spot we have been for months. zachy now weighs in at a hefty 37lbs, he is doing well with tolerating his bolus feeds and ive been adding at least 1-2 meals daily of a "blended" diet with juices, babyfood, yogarts, etc. i think this has also been a helping hand for him. zach has developed some new sounds, still non verbal for the most part, but he makes lots of vocal sounds, some days for speech therapy he does really well at imitating sounds and some days she isnt able to get zach to focus even on her. zach at least 30-40% of the time is in his own world, he is happy and content doing as he pleases (walking from room to room, looking for water to play in, banging on furniture, and licking baby wipe containers) he has a few toys, the ones that play music and light up that he enjoys and thats really all he likes. unless he is sick or sleepy he doesnt want to be cuddled, or held, he wants to go go go. he LOVES the water, that boy is such a water baby, he just loves it so much, even water on tv makes him smile and laugh. its adorable! we have gone back to houston for zachs scoliosis and are waiting until our next echo in july to see what and when they want to do, its looking more and more like titanium rib surgery, at texas childrens in houston. im still waiting on a report from the pulmonary doc there, and waiting for him to talk to the spine doc and surgeon there to figure out what the best option is.

our nursing changed, we are in HEAVEN with the nurse who is doing our primary hours, she works 40-60 hours a week and is such a sweetheart. close to our age, fun to be with, really works with zach, and so kind. we are so lucky!!

recently my brother in law decided to move to killeen, so as you guessed this is a big change and a big curve ball, he actually has a job lined up and will start july 11th, not much i can do about it, still not ready to just smile and go with it though. really just hoping we arent bogged down with them, their kids, or drama, we have enough going on here that i can barely think straight most days as it is.

Harold is ETSing from the army, in just days, gulp thats a huge change, he has been in for 11 years and now its over. im excited, im nervous, im anxious, im all over the place. the company he was trying to get hired on with is having a hiring freeze at the moment and thats another curve ball. however he is looking into other options and about to attend a 2 day job fair thing in houston with a bunch of fortune 500 companies that are looking for ex military to fill slots, it was a big opprotunity for him to be given and so we got him a suit and such clothes that he needs to have to go. time to dress the part and go out on a whim. we want to stay here, stay where our care is all set up, but we will have to see.

yea im sure there is more to update but my brain is mush....night all


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