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.:))
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
Tuesday, August 17, 2010
Matthew in the garden at CHB
Posted by nyveggie at Tuesday, August 17, 2010
Sunday, August 8, 2010
So far, the lock on the fridge is working well for Matthew. It stinks that the rest of the family has to lock and unlock the fridge door, but everyone is getting used to it now. Most importantly, Matthew says he is happy that the door is locked. Now he knows he can not be tempted into sneaking food from it.
Matthew did however eat part of a chocolate chip cookie yesterday. The boys and their friend Hali were having a garage sale to raise money for the Mito Action walk. They were also selling cookies. Matthew ended up sneaking part of a cookie and immediately started to cry and get very upset with himself. He kept saying that he tried not to do it but couldn't help it. Terry brought him inside and gave him a bigger dose of Benadryl. I managed to suction most of the cookie out of his tube. Within a few minutes he had hives on his face, but otherwise was ok. I checked the cookie ingredients and it listed eggs as less than 2 % . The garage sale went well. The kids worked hard and made 155 dollars. They each kept 30 dollars and donated 65 dollars towards Matthew's team. We are very proud of all of them.
Today we went to our first annual street party. Matthew had a very good time. The weather was perfect for him. It was cloudy and 68-70 degrees. He had fun playing with two of his neighbor friends, Ryan and Michaela.
Matthew's tree fort is almost done. We just need to find some rock wall rocks that are not so expensive. We have a busy week ahead. Matthew has PT tomorrow, an eye appointment in VT. on Tuesday and we leave for Boston on Wednesday. Matthew has appointments at both CHB and Tufts on Thursday. All three boys will be coming with us this time. We found a hotel with a pool, so Bradley and Steven will have something to do.
Posted by nyveggie at Sunday, August 08, 2010