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.

Sunday, November 21, 2010

Matthew is still not feeling the best. He has a cold and still running a low grade fever. He spent the day resting at home, watching TV and catching up on his school work.

Friday's appointments went fairly well. He weighed 12.7 Kilos(almost 28 pounds) and was 93.5cm(almost 37 inches). He has been growing very slowly since the TPN trial back in April 09.

His GI doctor who has been following Matthew since he was 18 mos old was again, not very helpful. He is a brilliant man but not helping much with Matthew's current nutritional status. Even with the ileostomy, Matthew can not digest fat or any complex foods. He has to eat simple foods such as dry cereal, soft veggies, soft or dehydrated fruits and small amounts of natural turkey slices etc. His food variety has decreased a lot since last year. We really need to find a supplemental formula that will agree with Matthew's GI system. We stressed this fact to his doctor and also mentioned that his genetics doctor is quite concerned about his nutrition. He did a little research on his computer and said we should try Portagen. It's a formula made for both children and adults who can not break down fats. This was only after he wanted us to try Avocados and Ostrich eggs . He mentions this every time we see him despite the fact that we tell him that Avocados upset Matthew's belly and that we have no idea where we would buy Ostrich eggs!!!!!! Seriously........

We dropped the script for the portagen off at our pharmacy and we are just waiting to see if his insurance will cover it. It needs a prior auth. His doctor also said that this can be bought at any grocery store in the baby formula section. I am not sure about anyone else, but I have never seen or heard of it before. It must be located right next to the ostrich egg section :)

Matthew's orthopedic appointment went well. She said that his AFO's are working well and to keep them the same. His knees still hyper extend and bow in. She also noticed that his hips rotate inward and have too much flexibility. This is something that we just have watch for now.
Also on Friday we had a chance to visit Eithene again. She was awake this time but not feeling well at all. Matthew talked with her some and tried to sing her a song, but she just wasn't feeling up to it. She did tell us a few things like : her favorite princess in Cinderella, she wants to see the new movie"Tangled", and she doesn't like Scooby Doo. We didn't take her picture with Matthew. I don't think she was feeling well enough and I didn't want to upset her. Don't forget to visit her site.
Matthew also met a new friend Emalie. She is 3 1/2 and a sweetheart like Eithene. Matthew said," Now I have 8 girlfriends."
On our way home yesterday, we stopped at Birchgrove Baking . This is the bakery where Matthew's Birthday cake was made. Matthew took his picture with Jenn. She is the one who made his cake.
Hopefully Matthew will be able to go to school tomorrow. He only has one day of school this week before Thanksgiving break.

Matthew had a chance while in Boston to visit a Build a Bear store. He was given a gift card from a very special person for his Birthday. Matthew picked out the only food related bear. A bear with candy corns. He spent a few minutes just holding the heart and making his wishes. It was so cute. Thank you Melissa.:)

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