Don't believe me when I say I'm going to update the same day I guess. Madelyn's doc appointment was fine on Wednesday. No new news. The doc thought her skin and eyes looked less yellow but drew more blood to verify levels. She wants her to continue her medicine until her bilirubin levels are completely back to normal. We don't have to have another visit with her for 2 more months. I also asked her about the risks of taking valganciclover and she said that Madelyn should be fine. The studies I was worried about talked about fertility and cancer issues in lab rats, but the doc said they give them an extremely high dose of the medicine, far higher than we would ever give a human. In fact, cancer is shown in many studies of drugs on animals for that very reason.
Other than that, Madelyn is doing good. She is only waking up once a night to eat now, finally! She is on a pretty good schedule. She is a touchy baby, however, and has a hard time falling to sleep if her schedule isn't followed just right. Hopefully she will grow out of that soon. I'm just glad to be getting some sleep in the meantime.
Friday, October 28, 2011
Wednesday, October 26, 2011
Update 10/26/11
Last week Maddie Kate had two doctor appointments. The first appointment was with infectious disease. We decided in that appointment to continue Madelyn's treatment with ganciclover through 6 months of age. There is an unpublished study that shows possible benefits in reducing developmental delays with prolonged treatment. For now we are continuing the treatment but I do have a few more questions about the drug that I want to discuss at our next doctors treatment. I just want to make sure that there are no serious side effects with long term use of the drug.
The second appointment was for a hearing aid fitting for Maddie Kate. The hearing aids fit around the ear and then have a little mold that fits in the ear. We chose clear molds but a pink hearing aid for her.
She is going to be so stylish! Because TEIS (Tennessee Early Intervention Service) is paying for the hearing aids, it could take several months for them to come in. In the meantime, Vanderbilt will provide loaner hearing aids for Maddie. We will probably have to come back in a couple of weeks once Maddie's molds come in and get the loaner hearing aid. She will then have to have new impressions taken since her ears are growing so fast. In fact she will have to have new impressions taken every time she goes in to get new molds which will be about every 3 - 4 weeks.
Today we have an appointment with the GI doc. I will let you know how that goes later on today hopefully.
The second appointment was for a hearing aid fitting for Maddie Kate. The hearing aids fit around the ear and then have a little mold that fits in the ear. We chose clear molds but a pink hearing aid for her.
She is going to be so stylish! Because TEIS (Tennessee Early Intervention Service) is paying for the hearing aids, it could take several months for them to come in. In the meantime, Vanderbilt will provide loaner hearing aids for Maddie. We will probably have to come back in a couple of weeks once Maddie's molds come in and get the loaner hearing aid. She will then have to have new impressions taken since her ears are growing so fast. In fact she will have to have new impressions taken every time she goes in to get new molds which will be about every 3 - 4 weeks.
Today we have an appointment with the GI doc. I will let you know how that goes later on today hopefully.
Monday, October 17, 2011
Maddie Kate rolled over!
Just wanted to let y'all know that Maddie Kate rolled from front to back two times last night during tummy time right before her bath. She was really unhappy about tummy time so I think she just got mad enough to roll over! I haven't been able to get her to do it today though.
Sunday, October 9, 2011
Update 10/9/11
Hey all. A lot of people have been wondering how we are doing and wanting an update. We are doing well right now. Things are relatively normal around here. Maddie Kate acts like a very normal baby. She has been going through a little bit of a colicky phase lately and has been very fussy in the early evening hours. She usually calms though after her late evening feeding and sleeps very well at night. She of course still wakes to eat, but then she goes right back to sleep. I remember Abby going through this phase as well. From everything I've read, it is just a phase and she will grow out of it. Abby is actually doing really well with Maddie Kate...even when Maddie is being fussy. It's funny because I thought Abby would be jealous if I was having to hold Madelyn a lot to get her to stop fussing, but she's not. In fact, if Maddie Kate is crying and I'm not holding her, Abby makes sure I know that Maddie Kate is crying and I need to hold her and get her to stop. She does not like Maddie Kate crying at all. She will scream at Maddie Kate over her cries, "MADDIE KATE! IT'S OKAY! YOU'RE OKAY MADDIE KATE!"
We had Madelyn's blood drawn on Wednesday. I had Austin look on the computer for the results. Her neutrofil count was up to 3500 from where it was at 930 the week before. That means being off the IV ganciclover has helped. Also her bilirubin was down to 6.9 from 8.0 and her liver enzymes were also down by at least half. This is all good news. Madelyn is currently on three different medicines. One is the oral ganciclover, the second is a vitamin, and the third is called ursodiol which is what is helping her liver enzymes drop.
Friday I met with a representive from TEIS (Tennessee's Early Intervention System). This is an early intervention system through the department of education that helps prepare at risk children for school. Because of Madelyn's hearing impairment, she qualifies for this service. A teacher will come out once a week and work with Maddie Kate on developmental skills, even as a baby, and will also work with Abby and I on sign language. We are lucky to live in Jackson which has one of the only two schools for the deaf in the state of Tennessee (the other one is in Knoxville). The teacher will submit reports to the WTSD (West Tennessee School for the Deaf) and when they feel Maddie Kate is ready, they will have her start attending classes there. She will start there no later than age two. Abby and I will also be able to go there to learn sign language. Madelyn will need this service even if she gets cochlear implants because the hearing is not as good and is not the same with the implants. She may need to do some signing still in order to communicate. I guess that is all for now!
We had Madelyn's blood drawn on Wednesday. I had Austin look on the computer for the results. Her neutrofil count was up to 3500 from where it was at 930 the week before. That means being off the IV ganciclover has helped. Also her bilirubin was down to 6.9 from 8.0 and her liver enzymes were also down by at least half. This is all good news. Madelyn is currently on three different medicines. One is the oral ganciclover, the second is a vitamin, and the third is called ursodiol which is what is helping her liver enzymes drop.
Friday I met with a representive from TEIS (Tennessee's Early Intervention System). This is an early intervention system through the department of education that helps prepare at risk children for school. Because of Madelyn's hearing impairment, she qualifies for this service. A teacher will come out once a week and work with Maddie Kate on developmental skills, even as a baby, and will also work with Abby and I on sign language. We are lucky to live in Jackson which has one of the only two schools for the deaf in the state of Tennessee (the other one is in Knoxville). The teacher will submit reports to the WTSD (West Tennessee School for the Deaf) and when they feel Maddie Kate is ready, they will have her start attending classes there. She will start there no later than age two. Abby and I will also be able to go there to learn sign language. Madelyn will need this service even if she gets cochlear implants because the hearing is not as good and is not the same with the implants. She may need to do some signing still in order to communicate. I guess that is all for now!
Saturday, October 8, 2011
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