I have a lot of anxiety about Kaitlyn's 6 month check up tomorrow. Last year in Oct, we found out she was losing some sensation during her urodynamics test. Neuro thought it could be due to her spinal cord retethering, so they scheduled us for an MRI a few weeks later, on Halloween. That was the day my world stopped again, you can only guess it's bad news when the Dr asks you to step into another room, while the nurse holds the baby. One would guess correctly, we did get bad news. Her spinal cord was retethered which meant another surgery and soon.
We scheduled it for early December, and then stressed over the next several weeks about another week long hospital stay, another 6 to 8 hour surgery, possible NICU, you name it, everything went through our heads. I felt horrible about having to leave the two older girls again but they took it as well as possible.
Every little thing she does or doesn't do now makes me wonder if she's retethered. She seemed to be falling down a lot more over the last couple weeks, but now not quite as much, but I can't recall if it is more than prior to us noticing. :( I hate this feeling. I feel like things have been going great, but now I am waiting for the other shoe to drop. I hope it's all in my head.
I will be back to update tomorrow evening once we get back. Please keep us in your thoughts and prayers.
Tuesday, October 9, 2012
Monday, September 10, 2012
7 Months Ago
This was Kaitlyn 7 months ago just starting out to really walk, taking a few tentative steps but so excited! Fast forward to Sept of the SAME year and here she is walking and while not perfectly, she's improved sooo much.
Overall she is doing pretty well over here, we have dropped to once a month speech and physical therapy, so I think we will graduate out by the end of this year. She goes back to clinic on Oct 10th and we'll get to do all the fun tests, minus the MRI. Sadly we don't get to see our wonderful neurosurgeon as he's moved on to another hospital :( We are going to miss Dr. Wellons. I hope we like the new one...fingers crossed!
Overall she is doing pretty well over here, we have dropped to once a month speech and physical therapy, so I think we will graduate out by the end of this year. She goes back to clinic on Oct 10th and we'll get to do all the fun tests, minus the MRI. Sadly we don't get to see our wonderful neurosurgeon as he's moved on to another hospital :( We are going to miss Dr. Wellons. I hope we like the new one...fingers crossed!
Tuesday, July 10, 2012
Time
Time, where has it gone? I keep meaning to come and post updates, but honestly with summer here and all 3 kids home and the various activities they have going on, it's not much time left. I am exhausted by evening time, so it's put them to bed and veg out for a bit.
So a mini update will have to do.
Kaitlyn celebrated her 2nd birthday in May! We have a small party at a local park that is accessible for everyone, that was nice. She got to many toys and ate way to many cupcakes lol but she had a good time.
So as you can see she had a great birthday, fit enough for a Princess who loves Elmo. :)
Kaitlyn has been doing really well healthwise, we've been lucky to not really have any appointments for her since clinic in April. We have been to the orthopedics guy, she got new braces, finally! We've only been trying to get them since April, um yeah. However they are great there and came up with a solution for everyone. You see when we went to clinic in April they suggested straight non moving braces for her, because she "crouches" some when she walks. Our physical therapist (PT) here said that hinged ones would be better because she sees her all the time and she knows better. Oy. So we talked to the ortho guy and he had a great solution, braces that have an adjustable strap on the back, so they can be completely solid, no give or more hinged with some give. Yay. So fast forward to a few days ago when our PT saw her, she said she is kinda of crouching. WHAT??? you've got to be kidding me...I noticed it, but thought that it could just be the way she walks. Sigh. So basically she suggests to pull the strap tight a few hours a day and then loosen back up to let her adjust to it and to walk better. I'll be interested to see what the guys down at the clinic think in October.
We're still doing speech and physical therapy twice a month, so every week we see one of them and then we finally, after 6 months of waitlist, got into the UCP playgroup on Mondays. She cried so much in the beginning, but has started adjusting, this is her 4th week and she only cried for about 5mins they said. So hopefully next week will be even better. The great thing about the playgroup is they have all the specialist there, speech, pt and occupational therapy to help and it's FREE! They age out at 3, but also have a preschool readiness group I hope she can get into next year.
We won a local photo shoot contest, here are a few of my favorite shots of my baby, who isn't so much a baby anymore.
So a mini update will have to do.
Kaitlyn celebrated her 2nd birthday in May! We have a small party at a local park that is accessible for everyone, that was nice. She got to many toys and ate way to many cupcakes lol but she had a good time.
So as you can see she had a great birthday, fit enough for a Princess who loves Elmo. :)
Kaitlyn has been doing really well healthwise, we've been lucky to not really have any appointments for her since clinic in April. We have been to the orthopedics guy, she got new braces, finally! We've only been trying to get them since April, um yeah. However they are great there and came up with a solution for everyone. You see when we went to clinic in April they suggested straight non moving braces for her, because she "crouches" some when she walks. Our physical therapist (PT) here said that hinged ones would be better because she sees her all the time and she knows better. Oy. So we talked to the ortho guy and he had a great solution, braces that have an adjustable strap on the back, so they can be completely solid, no give or more hinged with some give. Yay. So fast forward to a few days ago when our PT saw her, she said she is kinda of crouching. WHAT??? you've got to be kidding me...I noticed it, but thought that it could just be the way she walks. Sigh. So basically she suggests to pull the strap tight a few hours a day and then loosen back up to let her adjust to it and to walk better. I'll be interested to see what the guys down at the clinic think in October.
We're still doing speech and physical therapy twice a month, so every week we see one of them and then we finally, after 6 months of waitlist, got into the UCP playgroup on Mondays. She cried so much in the beginning, but has started adjusting, this is her 4th week and she only cried for about 5mins they said. So hopefully next week will be even better. The great thing about the playgroup is they have all the specialist there, speech, pt and occupational therapy to help and it's FREE! They age out at 3, but also have a preschool readiness group I hope she can get into next year.
We won a local photo shoot contest, here are a few of my favorite shots of my baby, who isn't so much a baby anymore.
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