I weighed Nathan last night and he weighed 23 pounds 10 ounces!!!! I don't get these weight gain spurts, but lets hope he keeps it up. I would love to see him turn a corner but who knows if that will happen.
Mark took him to theraplay last week and went back with him. I usually wait in the waiting area, but we thought it would be good for Mark to see what they are doing with him. It backfired bc Nathan did not want to work very hard. He only had one appt last week bc they didn't have anything on Friday. He has gone backwards a little bit, not going up the back steps by himself etc.
We received a letter from the endocronologist regarding our last appt. The bloodwork indicated that his zinc levels continue to be low so we will have to talk with Dr. Grimburg when she returns to find out what or if we will do anything about that. I looked up zinc deficiency and it had a very wide range of symptoms including hair loss, decreased appetite and failure to gain weight. Of course that got me hopeful but those were just the symptoms that I picked out that I liked. I am sure it doesn't account for everything but maybe we would see some little improvements if we gave him some supplements. We have to wait to hear from Dr. Grimburg bc zinc toxicity is apparently no good either.
9.28.2008
9.26.2008
Things are still stalled!
Well, Nathan's eating has slowed again and mealtime has returned to being a minor battle of wills. I haven't weighed him recently because I don't want to be disappointed.
He still has not started getting therapy through the IU yet. I am thankful that we have Theraplay in place during this lapse in service. Libby is playing soccer for the second fall season and I realized that Nathan will be four next year for soccer season. That would mean he would be able to play. Obviously since he cannot run and is the size of an 18 month old, he will not be able to run around with 4 & 5 year olds playing soccer in a year. It makes me sad, kind of one of the first major things that will set him apart from his peers. Would it be wrong to hope that he might be able to do it in two years? Could that be a goal, or is that crazy? In two years, he could possibly go to kindergarten but we will most likely wait until he is 6. So that gives us 3 years to get him caught up in weight, size and gross motor skills. I may be crazy, but I think we can do it!!
But on the other hand, we are not getting there quickly. The endocronologist called with his bloodwork results. I called back the next day and got a message saying she will be out of the office until the week of October 6th. We have a GI appt on Wednesday 10/1/08 and that doctors secretary called to say he has a scheduling conflict and we need to reschedule. I was looking forward to that bc he is the one who will be prescribing the Dexascan which will test his bone density. I was dissappointed that things will be pushed back again, but it's like Mark said nothing usually happens from the testing and appts anyway.
He still has not started getting therapy through the IU yet. I am thankful that we have Theraplay in place during this lapse in service. Libby is playing soccer for the second fall season and I realized that Nathan will be four next year for soccer season. That would mean he would be able to play. Obviously since he cannot run and is the size of an 18 month old, he will not be able to run around with 4 & 5 year olds playing soccer in a year. It makes me sad, kind of one of the first major things that will set him apart from his peers. Would it be wrong to hope that he might be able to do it in two years? Could that be a goal, or is that crazy? In two years, he could possibly go to kindergarten but we will most likely wait until he is 6. So that gives us 3 years to get him caught up in weight, size and gross motor skills. I may be crazy, but I think we can do it!!
But on the other hand, we are not getting there quickly. The endocronologist called with his bloodwork results. I called back the next day and got a message saying she will be out of the office until the week of October 6th. We have a GI appt on Wednesday 10/1/08 and that doctors secretary called to say he has a scheduling conflict and we need to reschedule. I was looking forward to that bc he is the one who will be prescribing the Dexascan which will test his bone density. I was dissappointed that things will be pushed back again, but it's like Mark said nothing usually happens from the testing and appts anyway.
9.11.2008
2 years later
So it has been 2 years since that fateful day when drs thought Nathan had Progeria. The outlook although still unknown is much better these days. It seems so long ago.
Okay, so here is the deal with his weight since the big eating binge. By the way tonight he ate some french fries and two whole McDonalds chicken nuggets, after which he had five grasshopper cookies, half of an ice cream sandwich (also mint) and some ice cream with chocolate syrup. So on Sunday night he weighed 22 pounds 3 ounces (where previously he hadn't cracked 22 pounds). Tuesday night he weighed 22 pounds 9 ounces and tonight he weighed 22 pounds 14 ounces. When he wiggled I actually saw 23! You are all probably thinking, poor Phyllis, she is so silly to get her hopes up. I just see it as an indication that if he eats enough he is capable of gaining weight.
Oh and Nathan will be getting a little brother!! Yes it is a boy! Mark thought we should place bets on when this new baby's weight surpasses Nathans. Not very funny right?
Okay, so here is the deal with his weight since the big eating binge. By the way tonight he ate some french fries and two whole McDonalds chicken nuggets, after which he had five grasshopper cookies, half of an ice cream sandwich (also mint) and some ice cream with chocolate syrup. So on Sunday night he weighed 22 pounds 3 ounces (where previously he hadn't cracked 22 pounds). Tuesday night he weighed 22 pounds 9 ounces and tonight he weighed 22 pounds 14 ounces. When he wiggled I actually saw 23! You are all probably thinking, poor Phyllis, she is so silly to get her hopes up. I just see it as an indication that if he eats enough he is capable of gaining weight.
Oh and Nathan will be getting a little brother!! Yes it is a boy! Mark thought we should place bets on when this new baby's weight surpasses Nathans. Not very funny right?
9.06.2008
Eating up a storm!
The last couple of days Nathan has been a voracious eater! He has been eating so much at mealtime and in between that Mark and I just look at each other in amazement and worry that he is going to get a belly ache. Thursday alone he ate 6 grasshopper cookies (the Keebler version of thin mints) Today at lunch he had two chicken nuggests, a couple french fries, four of those tiny little meatballs from my italian wedding soup and two chocolate chip cookies with milk. If he does not gain weight in the next couple of days, it is impossible for him to do so bc this is the most he has ever eaten. Not sure what happened, but we hope he keeps it up.
Nathan had his IEP meeting. He had evaluations for education, occupational therapy and physical therapy over the course of the last two months. He was ranked in the 4th % for overall gross motor development. Other areas were much better. Fine motor he was pretty much average. Cognitive Deveopment he was in the 88th % and (insert trumpet sound) social development he was in the 94th % which is no surprise. They approved him for one hour per week physical therapy provided by his school, UCP. I had talked to the director of UCP prior to the IEP meeting asking if I could or should request more than one hour weekly. She told me to ask for 90 minutes per week and stress all of his areas of weakness. So that is what I did. I went on about how he is unable to walk up and down a curb without help, he is unable to sit criss cross applesauce (formerly known as Indian Style which is no longer PC), he is unable to put his coat on or take it off. I even reminded her that he had been kicked out of a regular daycare due to his gross motor delays and in two years (okay, probably 3) he will be in Kindergarten needing to be able to keep up with his peers. So he is approved for two sessions weekly, totalling 90 minutes per week. 90 minutes weekly even sounds low for someone in the 4th % but with the two private sessions each week at Theraplay I have been taking him to, he should soon be climbing the developmental ladder!
Nathan had his IEP meeting. He had evaluations for education, occupational therapy and physical therapy over the course of the last two months. He was ranked in the 4th % for overall gross motor development. Other areas were much better. Fine motor he was pretty much average. Cognitive Deveopment he was in the 88th % and (insert trumpet sound) social development he was in the 94th % which is no surprise. They approved him for one hour per week physical therapy provided by his school, UCP. I had talked to the director of UCP prior to the IEP meeting asking if I could or should request more than one hour weekly. She told me to ask for 90 minutes per week and stress all of his areas of weakness. So that is what I did. I went on about how he is unable to walk up and down a curb without help, he is unable to sit criss cross applesauce (formerly known as Indian Style which is no longer PC), he is unable to put his coat on or take it off. I even reminded her that he had been kicked out of a regular daycare due to his gross motor delays and in two years (okay, probably 3) he will be in Kindergarten needing to be able to keep up with his peers. So he is approved for two sessions weekly, totalling 90 minutes per week. 90 minutes weekly even sounds low for someone in the 4th % but with the two private sessions each week at Theraplay I have been taking him to, he should soon be climbing the developmental ladder!
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