We took Irelyn to see the orthopaedic doctor at Children's Mercy Hospital on Tuesday October 27th to get the results of her hip ultrasound she had done on the 16th. She has developmental hip dysplasia in both hips. The surgeon said that they are not dislocated so that is a good thing. However they are subluxed, which basically means her hips are loose and need to be kept in a frogger leg position with a harness that she is wearing and will have to remain wearing for twelve weeks. Her hips are not actually dislocated or displaced therefore surgery won't be necessary. It looks fairly uncomfortable and she was pretty fussy for the first couple of days.
Irelyn continues to have OT twice a week to work on feedings. She is still only able to take 6 cc's by mouth before she tireds out. She takes 72 cc's every three hours through her Mic-Key button so she still has a long way to go in terms of oral feedings. She is getting stronger each day and we are confident that she will be able to take more and more by mouth each week.
Since Irelyn typically has three to four appointments each week we have decided that I will not be returning to my full-time job. There is no way that can happen. I am working a full-time job now at home managing all her therapies and appointments along with my two other kids schedules. Jeremy is having to work alot of extra hours and is sacrificing his time away from the family in order to make sure we can pay our bills and stay on top of things. I appreciate his willingness to do this for us without any complaints. He is wonderful and I love him deeply. While I will certainly miss my friends that I worked with and the job that I did, I am grateful to be able to stay home with Irelyn and take care of her. By not working outside of the home I am able to keep her protected from additional germs that I would have been exposed to at the hospital. She will have OT tomorrow and then she will have a much needed break for a couple of days that are appointment free! Yeah!
Thank you for reading and checking up on our precious gift from God. She is a wonderful addition to our family and we all adore and love her more than we can say. We will post when we have more news.
The Watters
Thursday, October 29, 2009
Friday, October 16, 2009
Irelyn's busy week!!!!!
Sorry for the late posting. We have had a busy week! Irelyn had her follow up appointment with the surgery clinic on Tuesday with Dr. Snyder. This was a waste of time! We were literally in the room with the surgeon for like 4 minutes total!!!! I couldn't believe it. Oh well that is okay I guess! Then she had OT on Wednesday and Thursday. On Wednesday Irelyn did fantastic with her exercises on the ball. She was having tummy time to help improve her neck and head strength. The therapist couldn't believe how great she did! She did her exercises for about 20 minutes and then the OT offered her a bottle. Well that didn't go well. She was absolutely exhausted and wouldn't take one cc. We hooked up her tube feeding and decided to call it a day. Dad was able to take her to her OT Thursday while mom had a doctor appointment of her own. They decided to offer her a bottle BEFORE exercising and apparently that helped out some. However, Irelyn still was only able to take 6 cc's before tiring out and then was switched to the g-tube for completion. And finally to end our week today, she had an ultrasound done on her hips just to make sure everything looks okay. We are trying to learn all that we can each day about the syndrome and the things that go along with it. These kids are at risk for developing hip dysplasia and that is why her pediatrician wanted a baseline ultrasound done. Of course we don't know the results. We pray to God that it will be normal.
This is how most of our weeks will be for awhile to be certain we give Irelyn all the treatments and therapies that she needs to in order to do the best she can do in life! In light of this Jeremy and I have decided that I will not be returning to work full-time. Instead I am going to try and work one night a week in the ER on Jeremy's nights that he is home. We will see how this goes. Those who know me well know why I say that. :0)
This is how most of our weeks will be for awhile to be certain we give Irelyn all the treatments and therapies that she needs to in order to do the best she can do in life! In light of this Jeremy and I have decided that I will not be returning to work full-time. Instead I am going to try and work one night a week in the ER on Jeremy's nights that he is home. We will see how this goes. Those who know me well know why I say that. :0)
Thursday, October 8, 2009
October 8th
First of all happy Birthday to Wendy.
This week has brought lots of answers to our questions, but still there are unknowns.
PT is slow going as Irelyn still gets sleepy why trying to feed with the bottle. She has only taken 5cc at both sessions so far. We saw specialty care today and she increased her intake to 65cc every 3 hours. We are also going to increase by 5 cc every week for 4 weeks. We have seen good weight and length gains so far. Today she weighed 7lbs. 5 oz. was 20 1/2 long. She still is really sleepy most of the time but does have periods of staying awake. Tuesday she was awake for 3 hours straight.
Wednesday we went to KU (University of Kansas) to see Merlin Butler, he is one of the foremost experts in the world on Prader-Willi. He operates one of only 4 PWS specialty clinics in the US. The other 3 are at UCLA, Vanerbilt, and University of Florida. He sits on the board for PSW and is the editor of "the bible" of PWS. He is extremely knowledgeable about PWS and is getting us in contact with other families in the metro that have a PSW member. Our questions where asked and answered here they where.
How long will she have the g-tube?
It will depend on her as every case is different, but as a general rule about 9 months or so.
This really helped Wendy out as he reassured her that Irelyn would eat but at her pace.
Milestone at what pace?
Usually double what is normal for children.
Growth Hormones? When to start and do you recommend then?
Yes, he recommends themas they are standard of care now(even now as tx for PWS, insurance companies fight not to pay for them, it might be because they are around 40,000 a year for 18 years). As for when to start, he said we have time around 6 months to 1 year or so is what he recommends.
Should we get vaccinations?
Yes, there is no increased risk for PWS and EVERYONE in the house has to get both flu and h1n1 vaccinations.
We agreed to do further genetic testing on both mine and Wendy's part to see if Irelyn has UDP or misimprinting on my part as misimprinting can be passed on. We also agreed to do some testing of Irelyns urine to see if she has adrenal deficiency as this is a MAJOR cause of people with PWS to die prematurely. This is also needed before she is started on growth hormones.
Other important things we learned: Our congressman that represents our area had a child with PWS that died and he is a big supporter of the cause, there will be a fundraiser sometime in the spring for PWSUSA, Irelyn is doing as she should with someone with PWS, and the state rep for PWS lives in our city. We go back in a month to see Dr. Butler and thank god for him being here so close to us. He told us he sees families from all over the midwest as he has been doing this for 30 years.
This week has brought lots of answers to our questions, but still there are unknowns.
PT is slow going as Irelyn still gets sleepy why trying to feed with the bottle. She has only taken 5cc at both sessions so far. We saw specialty care today and she increased her intake to 65cc every 3 hours. We are also going to increase by 5 cc every week for 4 weeks. We have seen good weight and length gains so far. Today she weighed 7lbs. 5 oz. was 20 1/2 long. She still is really sleepy most of the time but does have periods of staying awake. Tuesday she was awake for 3 hours straight.
Wednesday we went to KU (University of Kansas) to see Merlin Butler, he is one of the foremost experts in the world on Prader-Willi. He operates one of only 4 PWS specialty clinics in the US. The other 3 are at UCLA, Vanerbilt, and University of Florida. He sits on the board for PSW and is the editor of "the bible" of PWS. He is extremely knowledgeable about PWS and is getting us in contact with other families in the metro that have a PSW member. Our questions where asked and answered here they where.
How long will she have the g-tube?
It will depend on her as every case is different, but as a general rule about 9 months or so.
This really helped Wendy out as he reassured her that Irelyn would eat but at her pace.
Milestone at what pace?
Usually double what is normal for children.
Growth Hormones? When to start and do you recommend then?
Yes, he recommends themas they are standard of care now(even now as tx for PWS, insurance companies fight not to pay for them, it might be because they are around 40,000 a year for 18 years). As for when to start, he said we have time around 6 months to 1 year or so is what he recommends.
Should we get vaccinations?
Yes, there is no increased risk for PWS and EVERYONE in the house has to get both flu and h1n1 vaccinations.
We agreed to do further genetic testing on both mine and Wendy's part to see if Irelyn has UDP or misimprinting on my part as misimprinting can be passed on. We also agreed to do some testing of Irelyns urine to see if she has adrenal deficiency as this is a MAJOR cause of people with PWS to die prematurely. This is also needed before she is started on growth hormones.
Other important things we learned: Our congressman that represents our area had a child with PWS that died and he is a big supporter of the cause, there will be a fundraiser sometime in the spring for PWSUSA, Irelyn is doing as she should with someone with PWS, and the state rep for PWS lives in our city. We go back in a month to see Dr. Butler and thank god for him being here so close to us. He told us he sees families from all over the midwest as he has been doing this for 30 years.
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