All his supplies have been bought. He has his new back pack and lunchbox. He has already picked out his outfit for tomorrow. I can't believe it...my little boy is starting first grade. Today's game plan is to sort through all of his old
clothes and get his new ones ready. It is quite the task as Dylan has a lot of clothing. He has grown like a weed and nothing from last school year fits him. Pants and shirts are about an inch too short and I am loving every minute of it. He is truly healthy now and it shows. Given Dylan's medical history school supplies and new clothes are not the only thing we have to have for the school year.
Yesterday was Dylan's clinic check at Lucile Packard. It had been two months since his last visit. We really wanted to get him in before school started to see if there was any tweaking that needed to be done. Dylan had a full room yesterday. I think with the exception of the surgeons everyone from his transplant team was there. It was really great to see them all again. During the whole process you really form bonds with the team. They have seen you at your lowest and highest points. They ride the rollercoaster with you. Dylan's team has become family. While Dylan entertained everyone Noah and I spoke with the GI doctor.
I explained his belly issues from last month and asked what she thought it could be. We all agreed that it was not liver/medication related. I told her I felt it was possibly an allergy. Maybe something new had developed. Dylan has been riddled with food allergies since he was a baby. He has anaphylaxis to dairy and salmon (which is a new allergy) and a slightly less severe allergy to peanuts. I would get him in with an allergist at Kaiser, but it is hard when their area of expertise is NOT transplant and immunosupression. It is one of those things that even though it is unrelated to transplant, transplant still plays a huge role in it all. LPCH will be asking for a referral from Dylan's GI at Kaiser to see their allergists. One fantastic thing about LPCH is that they have some of the most amazing doctors, in ALL fields of medicine. So now we wait...
As of today Dylan's liver is extremely happy. All of his blood work is normal. Dylan has grown an amazing two and a half inches in six months. He has gained just about 7 pounds. It is amazing what a healthy liver will do for a kid. Dylan has been moved to clinic visits every four months and labs every two months. I think back to when he was a baby. This time six years ago I was adjusting to life with a BA baby. He was having weekly lab draws. Medicating a two month old was so new to me. Dylan had just had his Kasai a week before. I had no idea what kind of future my little guy would have or if he even had one at all. Now he is transplanted and doing better than anyone could have hoped for. Dylan's future is bright. He will grow up and do amazing things. We still live life one day at a time, but these days each day is so much better!
clothes and get his new ones ready. It is quite the task as Dylan has a lot of clothing. He has grown like a weed and nothing from last school year fits him. Pants and shirts are about an inch too short and I am loving every minute of it. He is truly healthy now and it shows. Given Dylan's medical history school supplies and new clothes are not the only thing we have to have for the school year.
Yesterday was Dylan's clinic check at Lucile Packard. It had been two months since his last visit. We really wanted to get him in before school started to see if there was any tweaking that needed to be done. Dylan had a full room yesterday. I think with the exception of the surgeons everyone from his transplant team was there. It was really great to see them all again. During the whole process you really form bonds with the team. They have seen you at your lowest and highest points. They ride the rollercoaster with you. Dylan's team has become family. While Dylan entertained everyone Noah and I spoke with the GI doctor.
I explained his belly issues from last month and asked what she thought it could be. We all agreed that it was not liver/medication related. I told her I felt it was possibly an allergy. Maybe something new had developed. Dylan has been riddled with food allergies since he was a baby. He has anaphylaxis to dairy and salmon (which is a new allergy) and a slightly less severe allergy to peanuts. I would get him in with an allergist at Kaiser, but it is hard when their area of expertise is NOT transplant and immunosupression. It is one of those things that even though it is unrelated to transplant, transplant still plays a huge role in it all. LPCH will be asking for a referral from Dylan's GI at Kaiser to see their allergists. One fantastic thing about LPCH is that they have some of the most amazing doctors, in ALL fields of medicine. So now we wait...
As of today Dylan's liver is extremely happy. All of his blood work is normal. Dylan has grown an amazing two and a half inches in six months. He has gained just about 7 pounds. It is amazing what a healthy liver will do for a kid. Dylan has been moved to clinic visits every four months and labs every two months. I think back to when he was a baby. This time six years ago I was adjusting to life with a BA baby. He was having weekly lab draws. Medicating a two month old was so new to me. Dylan had just had his Kasai a week before. I had no idea what kind of future my little guy would have or if he even had one at all. Now he is transplanted and doing better than anyone could have hoped for. Dylan's future is bright. He will grow up and do amazing things. We still live life one day at a time, but these days each day is so much better!
Dylan hanging out...last day of summer!
Dylan six years ago!
-Amber
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