Charlotte and I went to our first Spina Bifida Clinic yesterday. We go the the clinic at DC Children's. It was her 6 month birthday as well! Man I should have took some pictures. I've been a bad picture taker lately. Anyway The drive there almost gave me a heart attack because of the 3 round abouts the GPS lead me into. I will forever love the west for it's sense of grid planning! And to this day the only roads I hate in AZ are the diagonal ones and that is the one I will for sure avoid in DC next time I have to head into the Children's hospital.
Anyway I digress...
We made it 15 minutes early and just got seated and started reading Dracula which I was hoping to Finish for all the 'waiting' I was going to do and got like 2 pages read when Charlotte was called back to 'our' room for the day.
Jill Hill saw us first, she's part of the Spina Bifida Association here in the DC area and she volunteers on Clinic days. She said she just met a new mom of a 4 month old baby boy named Spencer who she had come down and introduce themselves. I got her number and blog so I hope we can get together sometime. They don't live to far from us.
After Jill came my first doctor showed up from Urology. They said what we've been doing is great and to just keep doing it. No changes and would get another urodynamics at a year. So we keep on Cathing her every 3-4 hours and keep up with the Ditropan to help her bladder. Thank you to Lindsay for giving me her unused Catheters!! We were paying for them but since Medicaid should kick in anytime now they will be free but now I can start using one and throwing it out. I really hate having to wash and reuse. Her kidneys look great and NO UTI so far! Hooray!
Next came the Neurosurgeon. They thought she looked great too. Her head felt good, shunt looked good and they checked all her movement and what feeling she had in her legs. and she felt the harder pokes not the soft ones. They said her muscles in her left leg were a little tighter then her right as well. They mentioned her soft spot was getting smaller and soon we'll have to watch for different signs then just a bulging soft spot for shunt failure, downward eyes, fever, nausea, vomiting, unusual crankiness... So far Charlotte is the epitome of Happy Baby so I think if we have a shunt failure I'm going to know if for sure as she's never been unhappy yet! I do have homework and that is to find out what her shunt setting is from our Dr in AZ. I should know that but I don't remember what it was last set at when she got the shunt.
Next came Physical Medicine. They just asked questions about her therapies she's been getting and checked her range of motion all over. They thought she was doing great and said they thought she'd walk with maybe just ankle bracing. I love that everyone thinks she's be able to walk. I just hope the sitting up will come soon and the crawling, scooting will come soon too.
Orthopedics was last. I wasn't as impressed with that part. I guess I didn't get a good vibe from the Dr that came. Anyway the only thing new is that they don't want me to paint her toe nails. As cute as it is, they say it can cause fungus, ingrown toenails, just bad problems with their feet, I think from the lack of feeling they have in their feet. She wants me to get a hip xray next to make sure her hips are in place because of the displasia she had when she was born.
My next visit will probably be in 3 months and we'll see how wonderful she is then as well!