We just finished a big day of appointments for Leah. We were very busy today but the good news is that we got pretty much all good news today. SB clinic days are always stressful because they are long with a lot of doctors to see, but also because it's when she gets a full check up and there could always be news we don't want to her. That wasn't the case today! We started out in Radiology for a C/T scan to check her shunt and ventricles. The C/T scan did not go well for Leah. She has to be totally strapped in and isn't able to move, which she did not like. Tears, lots of tears, ensued but she kept still enough to get some good shots.
Then we went for a pretty lengthy test of Leah's bladder and kidneys. I don't want to go into too much detail because Leah will be a big girl someday and could be incredibly embarrassed about her mom sharing this with everyone, so I'll try to share the information while still respecting her privacy. I've talked about the most important thing at this time is to keep her bladder and kidneys healthy, which is thankfully what we're doing today. SB kids (and really, everyone with a spinal cord injury) have different sensation, feeling, and control over bladder and bowels. Right now Leah's bladder muscle is very weak, so she isn't able to hold her urine and it leaks a lot. That is good because it means her bladder doesn't have any reflux up into her kidneys. It also means that she's much less likely to get a bladder or kidney infection... again our #1 goal is keeping those kidney healthy. Goal achieved! As she gets older - 3-4 years old - she'll need to be dry to go to school. We'll be able to do a few different things to help her with that.
After being in radiology, we made a stop in the hospital cafeteria and then found a quiet spot to give Leah a quick catnap before heading to our neurosurgeon. Again, good news! He said her ventricles looked great and the shunt is still working. Woo Hoo!! That is always a great thing to hear the neurosurgeon say. I remember at this time last year we were constantly adjusting the pressure on her shunt because it wasn't working as well, all leading up to her shunt revision. He said we probably didn't need to come back to for a year. Double Woo Hoo!! I asked him about the likelihood that a shunt fails now that she's outside the first year and getting close to 2. He said that there is a very high likelihood of failure in the first 2 years and then it goes down from there. He also said something very interesting, which is that the majority of shunts fail within the first 2 weeks of placement. So if you look at someone's shunt revisions over a lifetime, they tend to be clustered together in a very short period of time. Since Leah is almost 2 and she's had this current shunt for 7 months now, her chances of revision are decreasing. Now that doesn't mean we shouldn't still be vigilant and it doesn't mean I'll stop thinking shunt failure everytime she gets sick, but it does mean that the odds are in our favor. Another thing he said, which I kind of found funny, was that her head is so perfectly shaped. He said that sometimes kids with shunts or hydrocephalus or other brain abnormalities have misshapen heads. I've never noticed anything in other SB kids I've seen, but I'm also not a neurosurgeon. The first thing I thought about was how fortunate I am that we take Leah to a cranial-sacral therapist, and I truly believe that this therapy has helped her in sooooo many ways.
Our final appointment was with Dr. Marker, Leah's SB doctor, and probably one of my favorite people. I just love him! He reviewed the C/T scans (as an aside, Dr. Marker is so old-school that he still requests actual films, the only doctor that doesn't access them on the computer so we have to carry this huge envelop around) and agreed with neuro that everything there looks good. He also talked to us about her bladder tests and was very happy with the results. Eventually she will need some interventions to keep her dry for school, but no concerns today with anything. He also started asking us about whether we want to get her up and walking because he think she'll be able to. Ummm, what??!!! He said given her ambition and the little bit of strength in her hips, she could get into some Hip-Knee Orthotics and walk with the help of crutches. Now, this will probably take a lot of time and coaxing for her to actually get there, as it will be much easier to get around in her chair. But Ty and I both agree that she'll be able to do it. Everything she learns at P/T, she's able to figure out in a couple weeks. We think she'll be motivated and would really enjoy being up and walking, so when she's around 2 1/2 or 3, we'll start talking about what equipment she will need to get this done. All in all, a great last appointment. He wants to see us back in 6 months, and I hope we don't have to see him before then. It's funny, he's one of my favorite people but I hope to not see him very often!
We finished out our day at the DMV. We finally got the paperwork to get disability plates on our cars. This means we can park in the handicapped spots, which will make it so much easier to get her in and out of daycare and everywhere else we go with her. It will also motivate us to take her chair much more often than we do. Even though it's so much easier to carry her or put her in a cart or stroller, we really do need to get her out in her chair as much as we can. That's kind of a big milestone for us.
Great day, what a relief. The best part of the day was just seeing how happy Leah was all day. Except for some complaining during her morning tests, she was in a great mood all day. She loves to wave at everyone in the elevators and blow kisses to the nurses. I just love that girl.
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