Kai is 3 months old today! He is just a little over 10 lbs.
Wednesday, January 14, 2009
Tuesday, January 13, 2009
Kai's surgery
Kai and his MicKey button
Kai excited about not having a tube hang from him all the time
Kai's surgery went good yesterday. We are still working him back to his normal feedings. This MicKey button is going to be much nicer. We have to go back in 3 months to change to a new one. That's a very simple procedure and I'm assumming a very quick on as well.
Sunday, January 11, 2009
How Kai is doing
Kai is doing okay. He is now almost 10lbs. He smiles, coos, looks around and loves to be talked to. After the last time he was in the hospital, we have been trying to get him back on track with his feedings. We have come to the conclusion that right now he cannot handle large amounts of feedings. So he has a feeding about every 2 hours instead of every 3. He still does his continuous feeding throughout the night.
On Friday we had an appointment with the upper extremities doctor at Gillette. His right elbow is dislocated. Also his radius bone in his right arm is shifted down towards his elbow, so it does not line up with his ulna bone. At this point, they aren't going to do anything about it. She does not think Kai needs to do range of motion with his arms because he is moving his arms fine on his own. This doctor does not believe Kai is in pain because of it and will be seeing him again in 6 months.
Tomorrow Kai is having surgery up at Children's to switch from the G-tube to the Mickey button. This will be much comfortable for Kai. So we pray that everything goes good.
On Thursday, Kai will be seeing the ENT doctor. The will be doing a procedure called a scope (I think that's what it is called). Friday he has an assessment for physical and occupational therapy at the Pediatric Therapy Services. He continues to have early intervention in home every week along with his home care nurse. She now comes twice a week and helps out with some of cares.
I will try to keep more on top with blogging. It got so crazy busy at the end of the year. It is never dull at the Selly house. Both Gavin and Jace are doing good. I think they are a little stressed by everything that has been going on. They both start ECFE at the end of January.
Until next time!
On Friday we had an appointment with the upper extremities doctor at Gillette. His right elbow is dislocated. Also his radius bone in his right arm is shifted down towards his elbow, so it does not line up with his ulna bone. At this point, they aren't going to do anything about it. She does not think Kai needs to do range of motion with his arms because he is moving his arms fine on his own. This doctor does not believe Kai is in pain because of it and will be seeing him again in 6 months.
Tomorrow Kai is having surgery up at Children's to switch from the G-tube to the Mickey button. This will be much comfortable for Kai. So we pray that everything goes good.
On Thursday, Kai will be seeing the ENT doctor. The will be doing a procedure called a scope (I think that's what it is called). Friday he has an assessment for physical and occupational therapy at the Pediatric Therapy Services. He continues to have early intervention in home every week along with his home care nurse. She now comes twice a week and helps out with some of cares.
I will try to keep more on top with blogging. It got so crazy busy at the end of the year. It is never dull at the Selly house. Both Gavin and Jace are doing good. I think they are a little stressed by everything that has been going on. They both start ECFE at the end of January.
Until next time!
Our visit with the genetics doctor
On December 18th we visited the genetics doctor. We have recently received the dictation from that visit. It is about 4 pages long, so I will just sum up some of the main things. The genetics doctor had listed some of Kai's medical problems;
1.Cutis laxa
2.Feeding intolerance, failure to thrive
3.Status post G-tube placement
4.Multiple joint dislocations including elbow and both hips
5.Cryptorchidism
6.Hearing loss
7.Concern regarding disproportion
8.Concern regarding pain
We did visit the pain team when we were there last (I can't remember if I had written that in a a previous post). Kai is taking tylenol right now for his pain. In the rest of the genetics doctor's dictation, she wrote that she is "concerned that Kai may have a disorder that is not compatible with typical lifespans. " She thinks that Kai is a tenuous baby and we are encouraged to avoid any exposures to illnesses for Kai. She continues to believe that Kai may have some form of cutis laxa or a connective tissue disorder. They are doing a fibrillin 4 and 5 testing on Kai. Other diagnostics that they are considering would be a progeria type syndrome.
It is so hard to figure this out. Whatever Kai has, it is very rare! We aren't looking for a name, but we want to know what Kai's future holds and how long of a lifespan may he have. We should be meeting up with the genetics doctor again some time in March-ish.
1.Cutis laxa
2.Feeding intolerance, failure to thrive
3.Status post G-tube placement
4.Multiple joint dislocations including elbow and both hips
5.Cryptorchidism
6.Hearing loss
7.Concern regarding disproportion
8.Concern regarding pain
We did visit the pain team when we were there last (I can't remember if I had written that in a a previous post). Kai is taking tylenol right now for his pain. In the rest of the genetics doctor's dictation, she wrote that she is "concerned that Kai may have a disorder that is not compatible with typical lifespans. " She thinks that Kai is a tenuous baby and we are encouraged to avoid any exposures to illnesses for Kai. She continues to believe that Kai may have some form of cutis laxa or a connective tissue disorder. They are doing a fibrillin 4 and 5 testing on Kai. Other diagnostics that they are considering would be a progeria type syndrome.
It is so hard to figure this out. Whatever Kai has, it is very rare! We aren't looking for a name, but we want to know what Kai's future holds and how long of a lifespan may he have. We should be meeting up with the genetics doctor again some time in March-ish.
Playing catch up on blogging
It's been awhile since I have blogged. The last blog was about when Kai was in the hospital for his cold. He spent 3 days in the hospital. His oxygen levels got better, but would still dip at times. Levi and I had to do some infant CPR training before we could take Kai home. We also had Kai on an apnea monitor at night time for the first few days after he got home from the hospital. We don't use it on him every night, just when we feel it is necessary (like when he's not feeling good). So far, he has not set off any alarms on it.
Christmas came and gone. It was busy and we kept things low key. The boys were excited about all the presents. It didn't really seem like a holiday, it came so fast. The week after Christmas, we all got hit with stomach flu. What a way to end the year and start the new year. We tried very hard to avoid Kai getting it, but it didn't work, Kai ended up with the stomach flu! This ended up putting him back in the hospital for 3 days. Due to all the sickness, we had to reschedule 3 of Kai's appointments. The one was for his hips and that doctor is really hard to get in with. Kai is at high risk for sicknessess. When he gets sick, it takes a lot out of him and takes longer for him to get through it.
Christmas came and gone. It was busy and we kept things low key. The boys were excited about all the presents. It didn't really seem like a holiday, it came so fast. The week after Christmas, we all got hit with stomach flu. What a way to end the year and start the new year. We tried very hard to avoid Kai getting it, but it didn't work, Kai ended up with the stomach flu! This ended up putting him back in the hospital for 3 days. Due to all the sickness, we had to reschedule 3 of Kai's appointments. The one was for his hips and that doctor is really hard to get in with. Kai is at high risk for sicknessess. When he gets sick, it takes a lot out of him and takes longer for him to get through it.
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