Numbered Post
1. Trent saw a new GI doctor yesterday. Instead of going to New Orleans, we traveled to Mobile, Alabama. We have a plan now. Trent will be on Elecare at least until 12 months. At 12 months, if he is at a good weight, we will try Nutramigen, which is another elemental formula but not quite as elemental as Elecare and it contains trace amounts of milk protein. If he tolerates Nutramigen for four months, we can try cow's milk, though I will most likely use goat's milk instead. If he does not tolerate Nutramigen, he will be on Elecare indefinitely. And he will not be able to eat any dairy. The GI doctor also said no meat products until 16 months...depending on his progress.
The GI doctor recommended that I try vegetables. Trent needs more calories, but the doctor is hesitant to go back to a higher calorie mixture of Elecare because Trent has shown to be sensitive to phosphorus overload. I feel nervous to try vegetables but not fearful. I don't think he will have a problem with it. Of course, we are only adding one vegetable per week so that we know if one doesn't agree with him.
I feel better now that I have plan with a doctor. Trent is eating every 3 hours again because he growing and trying to catch up. He is making strides with his occupational therapy and that burns a lot calories. So I really hope the vegetables work.
Ok...on to the bad news. The new GI doctor disagreed with the old doctors. He thinks that Trent could have digested my breast milk if I had cut out dairy from my own diet. He said that when we put Trent back on BM after his virus it was too soon to draw any conclusions because Trent couldn't have digested anything. And with the severity of his allergy to cow's milk, even a tiny bit in my BM would cause him to have mal-absorption. He said it is possible (though unlikely) that he still couldn't have digested my BM without dairy in my diet, but that would have needed to be tested before I stopped BFing. There was no way the original doctors could have known if it was my BM or my BM plus dairy without experimenting. I am so angry about this. And angry with myself for being so exhausted and not fighting harder. But this really needs to be the end of my grief because I'm slowly sinking into a depression over this and it is time to move on. I'm researching re-lactating but honestly, I don't know if I can commit to all the work and then reexperience the loss if it doesn't work. I don't know. I really just don't think I can do it.
2. Trent is working on sitting up now. His OT is amazed by his progress. He lights up when she walks in the room and wants to please her. He works so hard until all of a sudden, he begins to cry because he becomes so tired. Then she cuddles him, lets him rest, and says: Oh I know. You are working so hard and getting so strong. And he smiles at her and is ready to work again.
3. Related to number 2. I am learning so much about Down syndrome. For example, low muscle tone is so much more involved than just floppiness. Every single muscle in the body can have low tone. Cheeks have muscles, the throat has muscles, the tongue is a muscle. So children with low muscle tone in cheeks will have cheeks that look as though they are sliding off the child's face, and the child will have trouble fully smiling, talking, etc. With low tone in the throat, children will have trouble swallowing and may choke often. Low tone in the tongue results in speech and feeding problems. Overall low tone can result in posture problems that can lead to back problems and bone issues. So OT is very important. Not only does Trent's OT stretch him, she corrects his posture and rotates his joints so that his movements are not lazy or less than beneficial.
4. We finally have minivan. We sold our SUV and got a minivan. How excited am I about this? VERY. Because it means my back will stop hurting from lifting Trent into a vehicle I can't even get into without grabbing onto a handle and pulling myself up. Now I just plop his seat into the base and go. No more twisting and turning and tippie toes and killer back ache. The doors on either side are automatic with a push of a button on my key. It is so freaking nice. It is a 2007 Dodge Grand Caravan with fold and stow seats. The kids absolutely love it. I am literally thrilled by a van. :D
5. I volunteered to become the Newsletter writer for the Early Intervention program. I may be asking for opinions of the newsletter in a few weeks.
The GI doctor recommended that I try vegetables. Trent needs more calories, but the doctor is hesitant to go back to a higher calorie mixture of Elecare because Trent has shown to be sensitive to phosphorus overload. I feel nervous to try vegetables but not fearful. I don't think he will have a problem with it. Of course, we are only adding one vegetable per week so that we know if one doesn't agree with him.
I feel better now that I have plan with a doctor. Trent is eating every 3 hours again because he growing and trying to catch up. He is making strides with his occupational therapy and that burns a lot calories. So I really hope the vegetables work.
Ok...on to the bad news. The new GI doctor disagreed with the old doctors. He thinks that Trent could have digested my breast milk if I had cut out dairy from my own diet. He said that when we put Trent back on BM after his virus it was too soon to draw any conclusions because Trent couldn't have digested anything. And with the severity of his allergy to cow's milk, even a tiny bit in my BM would cause him to have mal-absorption. He said it is possible (though unlikely) that he still couldn't have digested my BM without dairy in my diet, but that would have needed to be tested before I stopped BFing. There was no way the original doctors could have known if it was my BM or my BM plus dairy without experimenting. I am so angry about this. And angry with myself for being so exhausted and not fighting harder. But this really needs to be the end of my grief because I'm slowly sinking into a depression over this and it is time to move on. I'm researching re-lactating but honestly, I don't know if I can commit to all the work and then reexperience the loss if it doesn't work. I don't know. I really just don't think I can do it.
2. Trent is working on sitting up now. His OT is amazed by his progress. He lights up when she walks in the room and wants to please her. He works so hard until all of a sudden, he begins to cry because he becomes so tired. Then she cuddles him, lets him rest, and says: Oh I know. You are working so hard and getting so strong. And he smiles at her and is ready to work again.
3. Related to number 2. I am learning so much about Down syndrome. For example, low muscle tone is so much more involved than just floppiness. Every single muscle in the body can have low tone. Cheeks have muscles, the throat has muscles, the tongue is a muscle. So children with low muscle tone in cheeks will have cheeks that look as though they are sliding off the child's face, and the child will have trouble fully smiling, talking, etc. With low tone in the throat, children will have trouble swallowing and may choke often. Low tone in the tongue results in speech and feeding problems. Overall low tone can result in posture problems that can lead to back problems and bone issues. So OT is very important. Not only does Trent's OT stretch him, she corrects his posture and rotates his joints so that his movements are not lazy or less than beneficial.
4. We finally have minivan. We sold our SUV and got a minivan. How excited am I about this? VERY. Because it means my back will stop hurting from lifting Trent into a vehicle I can't even get into without grabbing onto a handle and pulling myself up. Now I just plop his seat into the base and go. No more twisting and turning and tippie toes and killer back ache. The doors on either side are automatic with a push of a button on my key. It is so freaking nice. It is a 2007 Dodge Grand Caravan with fold and stow seats. The kids absolutely love it. I am literally thrilled by a van. :D
5. I volunteered to become the Newsletter writer for the Early Intervention program. I may be asking for opinions of the newsletter in a few weeks.