Thursday, September 10, 2009

Post # 3 - Elliot

Elliot will be 7 months old in just a week! He is now sitting up on his own and just days away from full crawling. He amazes me with his strength! He is going to be a monkey, I can feel it coming. He will be the mover and shaker of the three. He finally had a shiny white tooth pop through this week! He is eating like a champ!There isn't much that he will turn his nose up at. Make fun of me if you will, but I have really gotten into making his baby food myself. I love that it's fresh and organic, not to mention super cheap and easy. Noah just doesn't know what he is missing out on! The whole sleeping through the night skill has yet to be mastered. He is currently still waking up twice a night to eat. The pediatrician says to keep feeding him when he wakes up for at least another month or so. I keep hoping he will turn that corner and start sleeping straight through soon!
We have found a wonderful daycare in Evansville for Elliot to stay while I am with Noah during the day at the feeding program. The search was not easy, especially not knowing the area, but we are so fortunate that it worked out this way. It's going to be so hard to leave him!! I am sure he will enjoy having friends to play with and with his dashing good looks, I am sure he will need to fight off the girls with a stick!
Thanks for checking in on us!

Sunday, September 6, 2009

Post # 2 - Zane

Double digits!! Zane is going to be 10 on Sept 28th! 10! Man do I feel old!
Fourth grade is treating him well so far. He has always done very well in school, excpect for the occasional problem with talking. I am not sure where this comes from ;)...If you remember,4th grade is the year they play the recorder in music. Can't wait for that...I am hoping by the time Noah and Elliot reach 4th grade they will be banned due to too many parent complaints. There is nothing like a symphony of 25 4th graders playing Mary Had A Little Lamb on the recorder. I'll be sure to post the video!
He has started his first year of tackle football and loves every minute of it. His first game was this past Saturday. He will be starting cub scouts up again in the next few weeks and then basketball will pick up where football leaves off. He is our social butterfly!
I am dreading the thought of leaving him behind when I head off to Evansville, but fortunatly now that our start date was pushed back, he will be done with weekend football games and will be able to travel with Brian on the weekends that I am not able to come back. It's really hard to imagine going two weeks between visits, so now I should be able to see him more often. He still doesn't seem too phased about us leaving other than making sure I would be home for Christmas. I certainly don't know that I could be as patient and understanding at his age as he has been since Noah was born. His love for his little brothers is more than obvious and I am so proud of what a great influence he is on them...

Post # 1 - Noah

Since my last posting a few weeks ago, we have been to St Mary's center for Children in Evansville for the evaluation with their feeding team. We met with the physcologist, OT, speech, and dietician. They did a complete history and then left us in the room alone with Noah to see if he would eat anything while they watched on camera. Suprisingly we were able to get him to nibble at a few things allowing them to get a good idea of his typical meal time (if that's what you can call it). A few observations they made, the first being that he is not actually chewing. He is mashing once or twice and then swallowing or spitting his food back out. He has very low muscle tone in his face and his jaw line is weak. They also noted his extreme anxiety issues and feel this could be a major issue with his progress in the program, but hope to be able to work on it. The Dr explained that children that have been as sick as Noah have no internal drive to eat. They lack the feeling of hunger. We can recognize that familiar feeling when our blood sugar begins to drop and we need food. Noah on the other hand, does not. His "bites and sips" diet as we call it, is only because it seems interesting or because everyone else is doing it. They said that after he is completely weaned of his tube feeds, it could take up to an entire year for the hunger mechanism to kick in. When I inquired as to his goals for the program at the end of 8 weeks they said that first off we have to work on getting him to a healthy weight. Aggreed. Second, they would consider the program a success if he was only needing tube feeds for 25% of his diet. They said he would need strict follow up therapy back at home and a supplemental 2 week program a year from now. This was a hard pill to swallow. My expectations were a bit higher than this, but sitting back looking at it now, 25% is leaps and bounds above 100%. Our official start date for the program as of right now is October 26th. It will be here before we know it!
For now, he is still tolerating the g-feeds with only and occasional episode of wretching. We have slowly been switching him over to a 45 cal formula and even the little bit of weight he has put on has made a huge difference. He looks so much better than he did a few weeks ago.
We met with his pulmonologist this week and he also got a flu shot. The pulmonologist was not pleased with how sick he has been this summer and advised that we put Noah back into our usual winter quarentine. Basically we will be avoiding any public places, any gatherings with lots of people, and other children. The Dr wasn't actually too worried about the feeding program as it is almost 6 hours south of here and the climate will be milder. He asked that we use precautionary measures down there as well. Since his lungs have not been in the best shape, he has asked that we increase the inhaled steroids to twice a day for the next three months. Obviously when H1N1 comes to our area, Noah will be a prime canidate for the vaccine, and we will be looking into that when the time comes. We are unsure as to whether or not to vaccinate and will discuss with his pediatrian and pulmonologist again at that time.
Aside from the feeding issues, Noah is growing up right before my eyes. His personality shines and he makes us laugh everyday. He is currently full of mosquito bites and has two skinned knees - what a blessing. This to me just shows that he is strong enough to be running around outside like any other two year old!