This is going to be a very busy week at our house. Jaxon has 5 appointments 4 of them at Children's Mercy. Today we had 2. 1st was occupational therapy for eating and 2nd was urology follow-up from his surgery. His OT therapist, Jodi, was very impressed with his head control this month. Since we only see her once a month she was amazed at how much he had grown in length. However growing in length means tightness in his muscles so stretch stretch stretch she says. He has hip helpers they are like biker shorts with the crotch sewn together to help with keeping his legs together and building strength in his hips. Jodi would like to see him wear them all day long while we are at home. I'm gonna just say now, i doubt it. He isn't a real fan. We are going to start with 3 hours a day and try to work up. She was very excited about his tongue play, and how many different tastes he has tolerated in the last month. We still aren't working toward volume that will come later. We have also been working toward using a straw. He is very fascinated by the fact he sees us using one so he wants to try. He takes water pretty well. We just put the straw up to his lips and when he accepts it we let water in. He has not yet mastered using his lips or any amount of suction. This appointment is probably the best appointment we have every month. Jaxon loves Jodi. She can make him so angry and the next minute he is smiling at her.
Next was urology. It was a very quick appointment to make sure everything from surgery was looking good. It went well and we will go back in 6 months. This is something we will have for most of Jaxon's childhood. As he grows it may need repaired or patched as the Dr called it. Dr Murphy his urologist is probably one of the most personable Dr's we have ever met. He is just very down to earth.
Since its premature awareness month I'm working an information table at the hospital on Wed over the lunch hour. It should be fun. Then we have a vision specialist and physical therapy appointment in one at home in the afternoon. This is through TARC. Phyllis will evaluate Jaxon's vision while he has physical therapy. She will then send her report to his opthamologist for our December appointment, so we can get a better idea how his eyes are responding and weather or not further treatment is needed.
Last, on Thursday we will see his cleft palate surgeon and an Ear Nose and Throat Dr. Jodi, Jaxon's OT therapist was not happy with the course of action the cleft palate team suggested so she pushed for us to see his surgeon again and a ENT Dr for a second evaluation. Then Jaxon is going to join me in Christmas shopping. Just me and the little guy hanging out should be fun. Jason didn't think he wanted to stay up all day after working all night to join us, party pooper :)
Monday, November 15, 2010
Friday, November 12, 2010
1st Synagis injection of the season/ A day I have rarely talked about
I can't believe Nov is almost half over. It has been a very busy month at our house I guess. Jaxon and Jason have both been sick for the last week. The crap is going around. Jaxon is still trying to recover. It's breathing treatments and suction all day long. He went for his 1st round of synagis shots this morning. It was a lot harder than last year. Since he's older now it just broke his little heart when they stuck him. He had to get 2 shots this time because of his weight. He will get shots once a month through March. This shot is not a vaccination it is actually anti-bodies against RSV (respiratory virus) which hospitalized him twice last year. Since he was born early he didn't get these anti-bodies most babies get, and he's still high risk because his lungs are so damaged and he's on oxygen at night. If you are all interested here is a link to the synagis website and the 1st diagram on this page shows the difference between a term baby and a premature babies airways when they have RSV http://www.synagis.com/what-is-rsv.aspx..
I pushed for the shots for him because I know they give him the best possible chance at a healthy winter. They are very expensive so insurance can drag their feet approving them. But we finally got them approved through both insurances.
I had a NICU flashback today on the way to work. I guess Jaxon getting shots kind of brought it on. That is the most difficult part even though he is a healthy year old I guess you never get past almost losing him. I remember walking into the big open nurses station at the back of the NICU after having been gone for maybe 30min for lunch to see his door open, overhead lights on and nurses running everywhere. The neonatologist was standing in his room overseeing every move and watching his monitor. Things were going bad in a hurry. He had gotten a fungal infection in his blood. His blood pressure had dropped, his sugars were out of whack, and he was having seizures and his respiratory was fading fast. I just stood there not knowing what to do thinking "this may be it." Nurse Kathy told me to go into his room and she had me put gloves on and just hold my hands on his tiny little body while they worked. He just kept seizing under my hands. He had 5 IV's and several blood transfusions that day. I stood with my hands on his little body for several hours. The heat lamp for his bed to keep him warm made the gloves on my hands feel like they were melting, and my arms were so bruised from holding them over the sides of his bed. My hands and arms could have fallen off and I would never have let go. They finally got him stable but he kept seizing so I asked the next neonatologist to give him more medication to stop it and she agreed and finally they stopped. That was the last time he ever had a seizure.
Every time you step foot in the unit to go see your baby there is the dreaded walk to his room, you never really know what you are going to find. Is it a good day or a bad day. But I'll tell you going to eat lunch everyday after was very nerve racking. At our next care conference meeting we were asked to make one of the most difficult decisions we ever had to make. If this were to happen again and his heart began to fail what did we want done.
I haven't shared that day much and I guess part of me needs to so thanks for letting me share.
I pushed for the shots for him because I know they give him the best possible chance at a healthy winter. They are very expensive so insurance can drag their feet approving them. But we finally got them approved through both insurances.
I had a NICU flashback today on the way to work. I guess Jaxon getting shots kind of brought it on. That is the most difficult part even though he is a healthy year old I guess you never get past almost losing him. I remember walking into the big open nurses station at the back of the NICU after having been gone for maybe 30min for lunch to see his door open, overhead lights on and nurses running everywhere. The neonatologist was standing in his room overseeing every move and watching his monitor. Things were going bad in a hurry. He had gotten a fungal infection in his blood. His blood pressure had dropped, his sugars were out of whack, and he was having seizures and his respiratory was fading fast. I just stood there not knowing what to do thinking "this may be it." Nurse Kathy told me to go into his room and she had me put gloves on and just hold my hands on his tiny little body while they worked. He just kept seizing under my hands. He had 5 IV's and several blood transfusions that day. I stood with my hands on his little body for several hours. The heat lamp for his bed to keep him warm made the gloves on my hands feel like they were melting, and my arms were so bruised from holding them over the sides of his bed. My hands and arms could have fallen off and I would never have let go. They finally got him stable but he kept seizing so I asked the next neonatologist to give him more medication to stop it and she agreed and finally they stopped. That was the last time he ever had a seizure.
Every time you step foot in the unit to go see your baby there is the dreaded walk to his room, you never really know what you are going to find. Is it a good day or a bad day. But I'll tell you going to eat lunch everyday after was very nerve racking. At our next care conference meeting we were asked to make one of the most difficult decisions we ever had to make. If this were to happen again and his heart began to fail what did we want done.
I haven't shared that day much and I guess part of me needs to so thanks for letting me share.
Wednesday, November 3, 2010
Halloween
We had a wonderful Halloween this year. Jason and I finally came to an agreement and Jaxon was a dragon. He was so cute. On Thursday morning I took him to TARC for their Halloween parade and story time. He really liked the story time, it was very animated. It didn't hurt that his caseworker was the one telling the stories. Since he still doesn't eat by mouth the candy and cookies had no appeal but he had fun seeing all the other kids in their costumes.
Now I'll back up a little bit. On Thursday we had an appointment to decide if Jaxon was going to get a helmet to re-shape his head. The nurse took his measurements and said he really needs a helmet, but the bad news is he's really to old and it won't do much good. This was where I got really frustrated. I've been pushing for a helmet since he was 6 months old and no one would listen. When I finally got someone to listen now he's to old. I went through all the usual blame someone else, blame myself, and so on. She went on to tell me the flat spot he currently has will most likely be like that forever. I was really upset. Its not that I wanted him to have to wear the stupid thing I just wanted him to have as much of a chance at normal as he can. Kids can be very cruel at a young age and I don't want him to have to deal with it anymore than necessary. I know kids will find something but being self-conscious about appearance is no fun. I guess I've come to peace with it. I've decided we have been to hell and back and if this is the worst thing we have to deal with I guess we are doing alright. He has many more challenges to come so I will focus on those and forget about the stupid helmet.
We have been doing water physical therapy once and week when we can. He still isn't real sure about being in the water but after awhile he warms up to the idea and splashes around. His physical therapist (PT) is really encouraging us to go. He sees his physical therapist and occupational therapist at home once a month. They give us a list of things to work towards for the month. Then we have occupational therapy once a month at Childrens Mercy for his eating skills. Although Jaxon only sits up right now he is making improvements toward wanting to move. We don't know weather it will be crawling or actually rolling toward things but he seems interested anyway.
We have discovered chocolate and its a beautiful thing. I decided to give him an Andes mint and wouldn't you know it was the 1st step toward putting anything in his mouth. He has now tried cinnamon apple sauce, butterscotch pudding, ranch dressing, among a ton of other things. They are only tastes he still refuses to actually eat anything but we are making slow progress. He has a sub-mucous cleft palate. Basically he's missing the cartilage in the roof of his mouth toward the back which is the soft palate. This allows food and liquids to go up into his nose. We saw his cleft team and they recommended therapy which we had already been doing so we have another appointment on Nov 18th to re-evaluate and come up with another plan of action. Therapy is helping but not enough.
Well I wrote most of this a week ago and saved it and now I'm just getting back to it. The only thing I would like to add is we got approved for synagis shots today. I tell myself I'm happy and relieved but at the same time it really sucks to take him to get shots every month and on the months he gets immunizations its two sets of shots. Its the best thing we can do for his lungs coming into the flu season so here goes.
Now I'll back up a little bit. On Thursday we had an appointment to decide if Jaxon was going to get a helmet to re-shape his head. The nurse took his measurements and said he really needs a helmet, but the bad news is he's really to old and it won't do much good. This was where I got really frustrated. I've been pushing for a helmet since he was 6 months old and no one would listen. When I finally got someone to listen now he's to old. I went through all the usual blame someone else, blame myself, and so on. She went on to tell me the flat spot he currently has will most likely be like that forever. I was really upset. Its not that I wanted him to have to wear the stupid thing I just wanted him to have as much of a chance at normal as he can. Kids can be very cruel at a young age and I don't want him to have to deal with it anymore than necessary. I know kids will find something but being self-conscious about appearance is no fun. I guess I've come to peace with it. I've decided we have been to hell and back and if this is the worst thing we have to deal with I guess we are doing alright. He has many more challenges to come so I will focus on those and forget about the stupid helmet.
We have been doing water physical therapy once and week when we can. He still isn't real sure about being in the water but after awhile he warms up to the idea and splashes around. His physical therapist (PT) is really encouraging us to go. He sees his physical therapist and occupational therapist at home once a month. They give us a list of things to work towards for the month. Then we have occupational therapy once a month at Childrens Mercy for his eating skills. Although Jaxon only sits up right now he is making improvements toward wanting to move. We don't know weather it will be crawling or actually rolling toward things but he seems interested anyway.
We have discovered chocolate and its a beautiful thing. I decided to give him an Andes mint and wouldn't you know it was the 1st step toward putting anything in his mouth. He has now tried cinnamon apple sauce, butterscotch pudding, ranch dressing, among a ton of other things. They are only tastes he still refuses to actually eat anything but we are making slow progress. He has a sub-mucous cleft palate. Basically he's missing the cartilage in the roof of his mouth toward the back which is the soft palate. This allows food and liquids to go up into his nose. We saw his cleft team and they recommended therapy which we had already been doing so we have another appointment on Nov 18th to re-evaluate and come up with another plan of action. Therapy is helping but not enough.
Well I wrote most of this a week ago and saved it and now I'm just getting back to it. The only thing I would like to add is we got approved for synagis shots today. I tell myself I'm happy and relieved but at the same time it really sucks to take him to get shots every month and on the months he gets immunizations its two sets of shots. Its the best thing we can do for his lungs coming into the flu season so here goes.
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