So, I have an incredible amount of information to share in a very small amount of time. The biggest issue today is weighing the pros and cons of a G-Tube. Tanner is a very inconsistent eater. One week he will gulp 6 ounce bottles and the next we're lucky to get 3 ounces in him. His weight has been the same (give or take a few ounces) for about 3 months now. Another concern I have is that he also also plateaued developmentally for the last 3 months. He's been on the verge of sitting for at least 4 or 5 months. My biggest concern is that Tanner is not getting the proper nutrition that he needs for brain development. We know that Tanner was expected to be delayed mentally and physically but as he gets older and older he is still at a 6 month level......physically and mentally. I did make an appointment with the GI department just to talk to them about it as well as his unresolved reflux issues. That appointment is July 21st. So, until then I'm just praying that things take off for him. He is eating very well this week. Another reason I think that we realized he is not taking in enough calories and nutrition is because of our first visit with the nutritionist. She said 20 minutes is all Tanner should get to have a bottle. We were spending at least an hour if not more getting those 6 ounces into him. So, that was totally defeating the purpose of the bottle because he was burning the calories he was taking in just on finishing the bottle. However, this week he's been finishing 4, 5, and 6 ounce bottles in that 20 minutes. So, only time will tell. I've also been trying some other suggestions from the nutritionist. We're back to pureeing avocados and adding the yolk of hard boiled eggs to them. Tanner seems to like this a lot. So, that's loaded with calories and protein. We've been occasionally giving him a bottle of pediasure and sometimes vitamin D milk with heavy whipping cream. She also told me to get some flinstone vitamins and crush them up in his solids. I got the vitamins but have not put it in food yet because he is still basically just on formula which has the vitamins. We will add them when he's on milk.
The next big news is that after many battles and long phone calls, the REAL Keppra has finally been approved by the insurance company. It's a shame that a child has to be proven to have an increased number of seizures to get this medicine. That's what it took though. Tanner is still having at least 20-30 blinking episodes a day. They seem to be getting longer and now he's crying during them. He rubs his eyes and nose and sometimes holds his head. I'm wondering if he's getting some sort of terrible headache during these seizures. I called the neurologist but he's on vacation until tomorrow. I want to ask to put Tanner on vitamin B6. We've heard that it compliments Keppra and can be more effective. He's first on my list to cal tomorrow. I have to get these little seizures under control because they are getting worse and I'm fearing they may lead up to something worse if not treated correctly.
Tanner had a post op appointment with the eye doctor yesterday and he said Tanner's eyes look beautiful. Almost all of the redness is gone. The difference is amazing!!! He has amazing precision with his eyes now. He looked at his hands and feet those first few days after surgery like he had never seen them before. He did an amazing job on Tanner's eyes. You can see a difference right away. Check him out.
I don't know why Tanner doe snot like teethers. He just likes to suck and gnaw on his hands. However, he is developing little blisters on his fingers from doing this all of the time. So, a couple of times a day I hold little slices of clementine for him to suck and gnaw on. He loves getting the juices out and yells at me with mouth wide open when I stop for even a second. It's so funny.
This is my new favorite picture. It looks like Tanner is kissing me. I'm actually kissing him. He sits pretty well in his boppy lounger and after I kiss him once he smacks his lips and then just stares up at me until I do it again. Maybe he likes the taste of coffee on my breath. Bleck!! Haha!
Carter and I visited my hometown of Altoona PA this weekend for my grandparents 50th wedding anniversary party. Tanner was going to come too ut we were all very sick the week before so we didn't want to take him when his immune system was still vulnerable. It was my first time away from Tanner for more than jsut a few hours. I missed him very much but it was a much needed break. I really enjoyed my time with Carter too. We had a great time together.
My next post is going to have heavy emphasis on Tyler and Carter. They are maturing so much and doing funny things everyday that I want to share. I have been wanting to write a post just about them for some time now but just have not had the time. Hopefully I can get to that this week as well.
this video is hilarious. The whole thing is funny but the very end is the best. You will know when you can hear me laughing.
Thanks for reading! Much love:)