Yep - I am sad to say that I have neglected this blog. Sorry to all my family and friends who have wondered what has been going on but we have just been busy or sick or both. So here is the scoop plus new pics of the boys.
Carter - Wow is all I can say. He has changed so much since going to school. He talks and sings so much, is beginning to ask for things and is becoming more aware of what is going on around him everyday. He is playing with toys more appropriately (instead of just licking them to death), can recognize and say all the letters of the alphabet and can atleast count to 10. For being as sick as he has been since starting school this is progress. Since my last update he has had two more ear infections and so we visited the ENT. This first one said he wasn't a canidate for tubes but thought he had hearing loss. So we scheduled an ABR. While waiting for the ABR he got the FLU and another double ear infection. We just couldn't catch a break. So we decided a second opinion was in order. The second Dr. said he most definately needed them since we had been on so many antibiotics in such a short period of time and he felt like the fluid in his ears could cause some speech problems. The ABR showed everything was good and he can hear fine. So we get tubes on the 25th of February and he is like a different kid. During all this time we had to manipulate his feeds. Being sick off and on like he has been and preparing for the ABR and surgery required alot of bolus feeds instead of his usual sitting for 30 minutes getting his feeds via the feeding pump. This takes some patience for me and alot of tolerance by Carter.
Well, I have been reading alot about people with feeding tubes who get their child to eventually start eating by starving them. Not completely, but restricting their formula diet to get the brain to kick in so to speak and the survival mode take over and realize that they need to eat to survive. This was not the route we were planning to go, not yet (since everything we do has to be Carter's idea). This type of aggressiveness was suggested by one of his doctors but with Carter monitored in the hospital hooked up to an IV for fluids so he doesn't dehydrate. Where am I going with all this? Well, everytime Carter is sick, we essentially due this same thing. We have to go to a pedialyte only intake for usually a day or so due to high fevers, sick stomach and just not able to tolerate any form of milk based formula. (Who would want to drink milk with a 103 fever?) After we get the fever under control and the meds start kicking in we restart feeds 50/50 slowly. His normal intake is 1140mls of formula a day. So after being sick and only on pedialyte you just can't jump back to the norm. We have to build back up slowly which normally takes about 5-7 days. We have been having to do the same after the ABR and tube placement since he was under anesthesia both times. Same protocol. Well, after the ABR (practically starving him for 24 hrs with only IV fluids and pedialyte) he sees Riley's water and decides he is thirsty and DRINKS the whole thing. We just thought its a fluke, since he does drink off and on but never more than 1-2 oz. So the day after the ABR, we began his 50/50 intake with only allowing 600mls total for the day to make sure everything is okay and to restart his system. I make Riley's milk cup for the night and Riley really doesn't want it and sets it down. Carter sees it and decides he wants it and drinks the whole cup a milk (fortified with Carnation Instant Breakfast). We were just beside ourselves. I knew he could tolerate things, but not this well and of his own accord.
So I guess his survival instincts kicked in and he decided that he was hungry and has not stopped drinking since. He will not drink his formula (who would - it tastes nasty) but he will drink water, lemonade, milk, etc. Depending on the day he is having, it usually dictates what he will or will not drink. But the great part on top of all this is he decides that it is okay to taste FOOD too! He will not actually eat anything but he will lick - doritos, cheetos, tositos, oreo cookies, vanilla wafers and french fries. Right now the food of choice is doritos. A week ago it was vanilla wafers (we ran out at 5pm one day and we had to go to the store to get more because he wouldn't stop crying until he got one). Once he got what he wanted, he was happy. Carter has never been very demanding, he is the laid back one, until now. So, we are hoping to continue to see improvements with him and hope to report that he is eating on his own sometime soon. For now, we are just getting over another round of the FLU (yes again, a week after surgery) so it is hard to say for the moment just how things are going to progress, but it looks promising! And even better, he is wearing his glasses more and more everyday! YEA!
Riley - the boy who tries my patience every stinkin' day (no Cinda, he hasn't changed one bit - just intensified). He is thriving in school and does not like the weekend because he can't go the school. The sickness bug has not hit him as hard as Carter but he did get the FLU twice as well. The second time we caught it early and it did not seem to affect him as bad. Riley does seem to suffer more with allergies than Carter does, so we have already started the allergy meds for the spring and hope we can keep him well.
We are suppose to be patching his eye to strengthen the other eye to avoid surgery. Well, try getting a 3 year old you tells you NO alot to wear a patch for 3 hours a day. Not gonna happen. I can maybe get 1 hr and that's it. So the Dr. decided to give him the drops to dialate the good eye to make him use the bad eye. I don't know what's worse, making him wear the patch or dealing with the side effects of a kid who is seeing blurry in one eye. Atleast a few temper tantrums a day, mostly from the headache I think he gets from having to do this. We go back in two months and just go from there.
One good thing that has come out of Kevin getting the FLU was he was off limits. Up until February 9th, we have rocked the kids to sleep every night to go to bed and Riley was still taking a bottle of milk. It was torture trying to break them of this habit late last year so I dreaded it when Kevin called and said he had the Flu. How in the world was I going to get them to go sleep? Luckily, they don't take naps during the day since they go to school in the afternoon so getting them to sleep doesn't take long. That first night, I made Riley a sippy cup of milk and told him if he wanted milk he would have to drink it out the sippy cup. He did. Ok, first one down. Then I got them ready for bed and had Kevin stay out of sight. They crawled into their beds and read 3 books, I turned on their music they use to listen to in the NICU, kissed them good night and walked out. Have not had an issue yet. I do have an escapee every once in while, but all it takes is one time putting them back to bed and they go to sleep. I got lucky. I thought this was going to be a tug of war but thank goodness they love it and have been happy about it ever since. Now if I can keep them from sneaking into our room around 3-4 in the morning things would be great!
The boys do spend a lot of time playing together now and mimicking each other. They read to each other and sing the same songs.
Enjoy the pics!
