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Levi Robert
Levi was born on August 25 2003. He was suppose to be a healthy little boy. But since birth he has been battling an undiagnosed mitochondrial defect and an undiagnosed congenital myopathy. He requires a feeding tube, oxygen, nursing, apnea monitor, suctioning, sat.monitor, hand and leg braces, and frequent doctor and hospital visits. He is also hypotonic and developmentally delayed. His mental state is actually above average. Although he cannot talk or walk. He is the happiest little boy and is a fighter. Journal Wednesday, August 15, 2007 11:36 PM CDT Wow! It has been a long time since I updated! SORRY. We have had such a busy summer. Where to start. We were busy with swimming lessons and tee-ball with Coree who is now a level 4 swimmer!! She is getting anxious for 2nd grade which already starts next Thursday. I got accepted into a nursing program and will be an RN in 2 years! Unfortunately the school and hospital I will be attending is over an hour away. I don't know if it'll work or not, but I have to give it a try. Well onto Mr. Levi. He has of course had a wonderful summer. His nurse took 7 weeks off this summer, which at first was stressful on us, but then it was really good because for the first time in 4 years we were a "normal" family. Yes Levi will be 4 next Saturday!!! I never thought we would ever celebrate this b-day. He can now walk across the living room independently but it is a "drunken" gait and he falls a lot. He has a walker now, but still falls quite a bit, but he is practicing. He has new braces that are metal and connect to his AFO's and go all the way up his legs and are connected to a belt that goes around his waist. (I think they are called twisteez?) He doesn't really like them, because it doesn't allow him to be "frogman"--he would just flop his hips and legs and now with the new braces it keeps him aligned and it is not comfortable for him. He still isn't talking--but he still signs, and he is using some word approximations (sp?) which is sort of "code" noise or utterances that Coree, his nurse, and I and a few select other people can understand and know what he means. Complete strangers cannot understand him though. He was at MDA clinic this June or July (I already can't remember when we were there) anyway they said physically he is about the size of an 12-18 month old, and cognitively or mentally is at about a 20-24 month old level. Duh. I already knew that. He has been sick only once this summer, and is displaying behaviors that are quite typical of normal 3 year olds (ha ha). He is eating orally more and more and actually enjoyed his first french fry the other day! He still has tube feedings at night, and his weight is still an issue. We just cannot get that weight up. We add canola oil to everything for fat, and he eats like 9 containers of baby food a day along with icecreams and other snacks, but then he gags because he gets overloaded. I just don't know what we can do for his weight. I had gotten him up to 26 lbs! but then for no reason at all he dropped down to 22 pounds and has remained there for over a month now! The other issue concerning us is the school system feels Levi should attend the special pre-school 5 days a week. I am against this, as he has always received home schooling and with that he only received 2-3 days of that. He still is extremely susceptible to viruses and gets fatigued so easily. I think it would be a disaster if we were to go full bore right away. I will be doing clinicals, Coree will be in school, and then him, we will be mingling all sorts of nice germs together. Also if he is to go to school 5 days/week, we would probably lose our nursing. Just because Levi is in such a gray area all ready with requiring skilled nursing care, the agency probably would not bother contracting with the school system. Atleast that is what I have been told. I get so frusturated with people telling me what to do with him. His doc is on maternity leave until September (she has been on leave all summer) anyway I want her to write an order for only 2 days a week in school (that way he can still receive therapies) but school starts next week here. His nurse says we better take him, but I don't think he is registered, and I think the school system still needs some info--I don't know--it is such a mess. Well anyway I better get going and promise more updates!! Hopefully new pics in a couple of days!! Hospital Information:
Links: http://www.caringbridge.org/mn/saralee sara's page |
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E-mail Author: levcor_3@hotmail.com |
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