Matthew is the youngest of our three boys. He has been diagnosed with Mitochondrial Disorder Complex I and III, Chronic Intestinal Pseudo Obstruction, FTT and Glucose Intolerance. He has been through countless tests and procedures in the past 8 years . We do not know what the future holds for him, but we are going to do our best to cherish every day with him. Stay strong little man.

Monday, August 23, 2010

Well, the call we were waiting for from Dr. Rodriguez, hasn't happened yet. We waited until Wednesday to call and check since he was just getting back from vacation last Monday. Terry spoke to his secretary and she said she would give him the message. Friday morning, still no call. I emailed Dr. Watkins. He emailed me back Friday evening saying that he had spoken with Dr. Rodriguez about Matthew and we should e-mail his office on Monday to get the ileostomy set up. We still have several questions to ask Dr. Rodriguez about the procedure before we schedule the ilesotomy.

Terry had a phone conference with a Dr. Cherrick from Matthew's insurance on Thursday evening. She was going to do a home visit but decided the phone conference would be a good start to gather a history, etc.. Dr. Cherrick is the medical director of the Compassionet program and is board certified in Hospice and Palliative care. She wanted to talk about what we have gone through and see where we stand right now. The program she oversees deals with chronically ill children so she has lots of experience dealing with families like ours. She talked to Terry for about 45 minutes. The main reason for her call was to discuss starting a new medicine for Matthew. She has had a couple of kids who have had severe GI and food tolerance problems. She went to a conference that talked about using neurontin to help kids with GI problems. Neurontin is a medicine that is mostly used for pain but affects the nerves. She has used it with great success on three of the kids in the program. This certainly isn't a huge group to say with certainty that it will work but it's worth a try and there are few side effects according to her. The hope is that it will help with Matthew. Dr. Cherrick said she would not start the Neurontin without the clearance of Matthew's docs that know him best. If she gets the ok to try it she would manage the start and increasing of the doses. She was very helpful and it doesn't hurt to have another doctor trying to figure things out.

Matthew had a pretty good week. He spent a good share of the week resting and playing with his toys in the living room, but he did get out and do a few things. We went to a local sand sculpture contest on Wednesday. Matthew stayed with his Gramma and Papa for the first few hours and met us at the beach later to help with the finishing touches of our sculpture. We made "Hamm" the pig from Toy Story and won second place in our catergory. :))
We also had a fun day on Thursday. We went to the Great Escape in Lake George compliments of the Starlight Foundation. Matthew had a cairicacture done while we were there. He wanted to be Buzz Lightyear holding a My Little Pony. Only my Matthew. :) They also had a wonderful picnic lunch. We were able to visit with Matthew's friend Colbie and her sister Tiffany. Colbie brought Matthew two very cute pony gifts. Thank you Colbie.:))

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