When I took Keeley to her 6-month well-baby checkup I asked her pediatrician if I should be concerned that she was not wanting to bear any weight on her legs. I couldn’t remember when Landon started doing it, but thought that she should be doing it by then. He looked her over and said that yes, something definitely was not right. We discussed how she also had hydronephrosis and was severely constipated enough to have to be on a prescription laxative. Our pediatrician thought for a moment and then said that she might have spina bifida occulta.
Say what? All I could think of was the guy that walked on all fours in the movie “Shallow Hal”. But I forced myself to focus and remain calm (I did have Landon and Keeley with me afterall) and ask questions. He told me that Keeley would need an MRI and should start seeing a physical therapist. I asked him if she would walk and he told me that there was a possibility that she would never walk.
I kept my cool until we got back in the car to head home. I called TJ and tried to relay to him the news, but I broke down. All my thoughts of my hopes and dreams for my little girl seemed so trivial; I just wanted her to be able to walk, to be able to have a normal life.
We started physical therapy before Keeley was able to get in for the MRI because it was determined that she would need it regardless what the MRI results showed. Keeley’s therapist Amanda was really great, but after our initial consultation she said that Keeley would probably need to wear braces. Luckily I had TJ with me this time so I didn’t feel like I was getting negative news alone. But all I could think of when I heard “braces” was Forrest Gump. I know that that’s extreme, but that’s where my mind went.
Keeley’s MRI came back clean and showed absolutely no signs of any neurological issues. Than God! Keeley was also making progress during her weekly physical therapy sessions; she started officially crawling on New Years Eve (almost 11 months).
We had to meet with an orthopedic surgeon to determine for sure if she would need braces. After waiting in the room for over 2 hours he looked her over and said that yes, she indeed does have hypotonia and would need to wear braces when she starts walking.
Hypotonia? That is the first I had heard of that term! Hypotonia means low or decreased tone of the skeletal muscles. Finally at least we had a name to something! While getting negative (good) results on tests was great, they did not help us figure out what was wrong and what was the best way to fix it!
Keeley worked so hard and was walking by the time she was 17 months (which is still within the normal time frame!). She continued physical therapy until she was about 22 months and was released from the program because she met all her physical therapy goals! She did have to wear braces, but they were nothing like Forrest Gump’s, they fit right into her shoes and barely came up past her ankles. If you weren’t looking for them, you probably wouldn’t notice them. And Keeley didn’t seem to mind wearing them; in fact, she would bring them to me to put on. I think she really like the stability that they gave her.
But this post isn’t about all the medical issues Keeley has had, it is a celebration of how far she has come. Every time we got potential bad news about Keeley’s development she proved everyone wrong. We thought there was a chance that she may never walk; well today she runs and jumps and dances like any other 2-year old! True, she may fall down more, but I think she inherited the clumsy gene from me! Keeley had started speech therapy a couple months before our move and by the time she was reevaluated in our new county she no longer qualified and was even above her age-level in many categories!
Keeley-Bug, you are an amazing little girl. I am so proud of everything you have overcome already in your short life. I love how you stand up for yourself (sometimes a little less attitude would be nice), how you love your brothers and sister, and how you are just a perfect fit for our super silly family.
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