October Spina Bifida Clinic
Today while driving into Cincinnati, I got a little emotional thinking about how far we've come in a year. Even now as I write this, I can't help but choke up. In spite of all that happened leading up to her birth, God gave us such an amazing little fighter. She inspires and amazes me more every day.
One thing that really blind sided me today was being told that Kennedy will soon be cast and fitted for AFO braces and a stander. The AFO braces are basically leg braces that fit through the calf and the ankle. One of Kennedy's feet points in a little bit and when she tries to bear weight on that foot, it looks like she's trying to stand on the side of her foot, instead of flat footed. The stander is basically a wheelchair, but you stand in it, instead of sit. It has wheels on the side, as well as two smaller wheels out front and two in the back. Rehab also wrote out a prescription to have Kennedy begin stretches in her weekly PT sessions. The Rehab doctor believes her muscles are too tight in her hips and her knees, so she'd like to work on that now to avoid any issues in the future. She also wants Kennedy to have another manual muscle test done. When Kennedy had this done while in the NICU the PT said she believed the damage began at L4. However, the Rehab Doctor now believes it could be lower, possibly L3.
The rest of clinic was pretty uneventful. Urology said the sediment and kidney stones that were showing up in the renal ultrasounds before are no longer there. They didn't see any problems with the imaging today and said we are still moving forward without a cath program. Kennedy will be having a bladder x-ray next month when we go back for other follow-ups. The Dietitian was very happy with Kennedy's height and weight. She allowed Kennedy to stop taking the liquid vitamin. She's said we could start offering breast milk and water with meals.
Over all, I'm very happy with the way today's clinic went. I was a little nervous about Kennedy getting a stander, because I was worried that she'd get around better in that and not want to learn how to walk. However, having a best friend with Cerebral Palsy I was able to get some insight into how the mind of a child with this equipment works. Janna explained to me that when she had the AFO's and a stander she still wanted to walk more than anything. I hope Kennedy will have the same spirit and determination. Although, I had just finished telling her therapist that she wasn't wanting to pull herself to army crawl 2 weeks ago. Not 10 seconds after I said that, she started army crawling. In the end only Kennedy knows what she will and will not want to do. Hopefully these pieces of equipment will only help her to be a stronger little girl.
On another note, Kennedy got to meet her NICU buddy, Samantha today. Samantha's mom had her fetal surgery the day before I had mine. I know I've said this before and I'll say it again. Having the support of other Mom's who actually know what you went through has been such a God send. Even though Renee and I didn't get to meet until after our girls were born, it has been so nice to not only have her, but to have all of the other fetal surgery mom's to lean on. Sometimes I don't know what I'd do without all of them!
One thing that really blind sided me today was being told that Kennedy will soon be cast and fitted for AFO braces and a stander. The AFO braces are basically leg braces that fit through the calf and the ankle. One of Kennedy's feet points in a little bit and when she tries to bear weight on that foot, it looks like she's trying to stand on the side of her foot, instead of flat footed. The stander is basically a wheelchair, but you stand in it, instead of sit. It has wheels on the side, as well as two smaller wheels out front and two in the back. Rehab also wrote out a prescription to have Kennedy begin stretches in her weekly PT sessions. The Rehab doctor believes her muscles are too tight in her hips and her knees, so she'd like to work on that now to avoid any issues in the future. She also wants Kennedy to have another manual muscle test done. When Kennedy had this done while in the NICU the PT said she believed the damage began at L4. However, the Rehab Doctor now believes it could be lower, possibly L3.
The rest of clinic was pretty uneventful. Urology said the sediment and kidney stones that were showing up in the renal ultrasounds before are no longer there. They didn't see any problems with the imaging today and said we are still moving forward without a cath program. Kennedy will be having a bladder x-ray next month when we go back for other follow-ups. The Dietitian was very happy with Kennedy's height and weight. She allowed Kennedy to stop taking the liquid vitamin. She's said we could start offering breast milk and water with meals.
Over all, I'm very happy with the way today's clinic went. I was a little nervous about Kennedy getting a stander, because I was worried that she'd get around better in that and not want to learn how to walk. However, having a best friend with Cerebral Palsy I was able to get some insight into how the mind of a child with this equipment works. Janna explained to me that when she had the AFO's and a stander she still wanted to walk more than anything. I hope Kennedy will have the same spirit and determination. Although, I had just finished telling her therapist that she wasn't wanting to pull herself to army crawl 2 weeks ago. Not 10 seconds after I said that, she started army crawling. In the end only Kennedy knows what she will and will not want to do. Hopefully these pieces of equipment will only help her to be a stronger little girl.
On another note, Kennedy got to meet her NICU buddy, Samantha today. Samantha's mom had her fetal surgery the day before I had mine. I know I've said this before and I'll say it again. Having the support of other Mom's who actually know what you went through has been such a God send. Even though Renee and I didn't get to meet until after our girls were born, it has been so nice to not only have her, but to have all of the other fetal surgery mom's to lean on. Sometimes I don't know what I'd do without all of them!
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