10/09/12

10/09/12 Yesterday I took Liam to see his GI doctor: He's down to 19LBS. We discussed everything all the way back. Liam doesn't tollerate concentrated feeds. The only thing we found he tolerates is infant soy formula with Duocal. They we discussed how he tolerates just about every feed you try him on while on oxygen. ½ a litter is the difference between Liam tolerating feeds or not. So he's going to contact our surgeon at Children's, Jones, as well as Barb with UCSF PediSurg and see what they have to say. He is considering ordering a test of Liams lungs that would check the blood movement and air movement. His GI said "Liam is a puzzle I cant figure out and I just cant live with that. I NEED to know whats going on". We're praying they figure something out. For now Liam is staying on the infant formula because we are trying to avoid hospital stays until he goes back to see Jones at Children's on the 17th to discuss his Hiatal Hernia and a Medi-Port. GI feels there is something serious going on that needs to be figured out. He said its great that you know all you have too do is put him on oxygen to get him to tollerate feeds but that means there's something serious going on. Pulmanology doesn't want him on oxygen unless he's desatting and doesn't care if it means tolerating feeds or not. Its been an on going fight. They say "But it shouldn't work that way, it doesn't work that way". I say "Stop looking at Liam like a normal kid with normal functions. Liam is far from a normal case and should be treated as he reacts now as you expect him to react". Hopefully with our GI on the case we will get answers because quoting him "I'm kinda a pain in the ass" so he should be able to get an idea of whats going on. I get emotional when thinking he might have to go back to UCSF, 4 hours away and no way for my husband and daughter to come up and visit or stay with us. Every trip to UCSF is two weeks min because they know we live so far away and wont be able to jam back there. I hate the thought of beiing so far away from EVERYONE and being so very alone again up there and having absolutley no privacy what-so-ever with their shared rooms and bathrooms. But I know that if he has to go back there he will be in great hands with the Pedi-Surg staff and that it is part of God's plan. Our biggest stress right now is getting a call that he needs to go ASAP and not having the funds to do so. Im starting to contact CCS and Brightstart is bring out a coordinator that can give me a list of organizations that will hopefully help us with funding. I just pray we get enough of a notice before this happens. If anything we will have it all prepared and ready for next summer when he will be going back for a clinic. Today Liam had Brightstart. He showed them how he plays patty cake. "Roll em up and roll em up and throw em in a pan" It was adorable. He also played with mega blocks for the first time. He would take them out of the bin, then put them back in. It was great for toning his fine motor skills and teaching him to clean up after himself, a tool this momma finds to be a must have. They gave me a copy of the report from last week when the PT came out. She said he has low muscle tone and that there are a few excersizes that I am to work with him on daily. She said she reccomends comming out 1 to 2 times per month for now. He will still have Brightstart once a week but then they are adding PT to that. Hopefully with all of us working with him, Liam will gain muscle tone and be walking in no time. As of right now, he's not strong enough or loose enough. Tomarrow will be a big day for us. Liam has an appointment with our pediatrician. We'll discuss everything the GI said. Liam will get his 2nd flu shot and hopefully his first RSV vaccine. After that we are taking Liam on his very first trip to the pumpkin patch. Last year we didn't get to take him or Lanie because he was in the hospital. We are hoping that because we will be going early in the day, during a school day that there wont hardly be anyone there. We've had success with that plan before.