Our Healing Journey

IMG_0185I’m not sure when the falls got suddenly worse but his balance had always been a bit off. Some-time in October of this year though, we had a birthday party for a friend’s son’s 5th birthday and that’s when I decided enough was enough. I knew Jaxson had been falling a lot recently but watching his legs suddenly give when he was trying to complete any physical game activity while at the party, finally set my panic button off. I could not wait another 3 weeks for his orthopedic appointment I had made earlier in the week.

I had already gotten a teacher’s note the previous week, stating that during a scavenger hunt game with Jaxson she noticed he fell at least 5 times for no apparent reason. Also that same week he had fallen on his face off the bus as he was being dropped off at the after school program. As his mother I’m sure you can imagine the pain and frustration this was all causing me but again, my panic button had not fully gone off until the day of the birthday party. I excused myself early from the party; we had literally been there about a half hour.   I got us in the car and called my mother. I told her that I was taking him to the hospital.

Mind you, Jaxson was not complaining of his falls but when I would ask him what was happening he would respond that his legs were acting funny and they would just fall on their own, almost as if they had a mind of their own; something that he obviously could not control he felt.

We got to the hospital’s emergency section and were attended to fairly quickly. I must admit I was a little apprehensive of the first doctor that came in to examine him as she looked very young and as non-judgmental as we all try to be, it’s hard to assume that such a young doctor could have a lot of experience. However, I may have underestimated her expertise as it seemed she was finally helping us uncover whatever underlying issue this may be. She asked some questions, did some of the preliminary physical type testing most doctors do, and came back with another doctor for a second opinion. This time the doctor was older (I know, I know this shouldn’t matter) but at that moment that made me feel better. He repeated some of her testing (looking through Jaxson’s eyes with a light, etc.). Then he had Jaxson do some regular walking,  running, walking on a straight line, jumping and so on to assess his balance.

They left for a while and the initial doctor came back with some information and instructions. She told me this was not a diagnosis but that they didn’t believe the issue was an orthopedic issue but rather a form of ataxia and that we needed to see a pediatric neurologist as soon as possible to get to the root of all this.

It was a Sunday when I took Jax to the ER and the following day, I called the neurologist’s office as instructed and made Jaxson an appointment for as soon as possible.

I kept him from school for several days as I was afraid to send him and have him keep falling. My mother came down to stay and help as I had to go to work.

The neurologist’s appointment finally came and I felt very good about the neurologist. He gave me the sense of being a top neurologist and at the top of his profession. Anyway, he did some testing on Jaxson, similar to the ones in the ER and asked me many questions about the history of his development.

Toward the end of our visit with the neurologist, he stated that he believed this was a coordination issue and agreed with the ER doctors that perhaps it was a form of ataxia. He indicated that we needed to do an MRI as soon as possible to find out if this was indeed the case.

I scheduled the MRI as soon as I could all the while resisting the urge to Google what this ataxia thing was all about. Gosh! I thought, Jaxson and I have already been through so much. First his hearing loss which I still cling to the fact that it was induced by the gentimicin given at birth. Even if it was not necessarily induced by the gentimicin, it was definitely precipitated by it if there is any “genetic” predisposition going on. I just wanted to crawl into a hole and cry myself to sleep. I probably did now that I think about it. Having children is really hard and I imagine it is even harder as a single mother. Regardless though, I’m not going to sit here and feel sorry for myself and as a good friend told me during those days, “just do the MRI and find out what the issue is so that you can resolve it” and I intend to do just that.

We scheduled the MRI and in the midst of all this, the orthopedic appointment I had made prior to bringing him to the ER came up; and even though the ER doctors and neurologist did not believe there was anything wrong in that regard, I still felt he should see the orthopedist. His father and my mother took him to that appointment. As it turned out this orthopedic which was referred by his pediatrician is not even a pediatric orthopedic but rather just a regular one or an adult orthopedic for that matter. However, he still did examine Jaxson and even ordered X-ray’s right on the spot. His notes indicated that Jaxson had one leg slightly longer than the other with possible right hip dysplasia and possible slight scoliosis and we should consider possible mild cerebral palsy. Jesus Christ! To top it off he stated that he was not a pediatric orthopedic and that we should take him to one for a proper evaluation. I proceeded to make an appointment with the pediatric orthopedic and made it to coincide with the day of the MRI results appointment with the neurologist.

On the day of the MRI, I had the bright idea of asking (since Jaxson was already going to be put down for this MRI) if they could also do an MRI of his hips as he was going to be seeing a pediatric orthopedic soon and the orthopedist may ask for this. This inquiry set off a whole range of opinions and events. They told me “Well, you can’t really ask for this on the spot; the technician can only go by what is on the ordering doctor’s script; the insurance needs to authorize this before-hand and they don’t do this on a same day basis; well what if the orthopedic wants an MRI of his knees instead,” etc. As calm as I could, I said “ok, I’m calling the neurologist now to add the hips to the script immediately and to have his people call my insurance to get this authorization; I’m not having my child be put under twice if we can do this in one shot.” It got done, I was able to coordinate the brain and hip MRI for the same day and the test took about an hour and a half to complete.

I had forgotten about the word ataxia or at least tried my hardest not to focus on it and just pray that this was nothing or at least something really simple or at least something related to the vestibular system which is what the gentimicin affects which is part of the inner ear/cochlea. The vestibular system also controls balance. Jaxson’s vestibular apparatus still has not been assessed for proper functioning which is one of our next steps.

The night before getting the results of the MRI, I opened my periodforgood monthly box and unbeknownst to me, the charity I’ve donated to for the month through my monthly subscription has to do with a brother and sister with a form of ataxia. I hope for the best for them and send them lots of love and light. I found this alarming though and it did send me into a Google frenzy when I read about their story on the periodforgood card.

Well, the next morning we go for the MRI results and as it turns out the MRI was not good and does indicate this possible dilemma of the Ataxia or it could even be something as “simple” (for lack of a better word) as a vitamin E deficiency. The next step is to go for genetic testing. But what I found most interesting during the appointment with the neurologist that day, was that Jaxson did two things he had never done. Aside from him being overly rambunctious and energetic, at one point while the doctor was telling us the results, he took his two little index fingers and covered my ears; he put his fingers deep in my ears in order that I would not listen to what the doctor was saying. He then proceeded by taking off his hearing aids and telling me “see mommy, I don’t need this, I can hear.” My little Ganesh! He is so smart, perceptive and intuitive. I just love him. Also, we met with the pediatric orthopedic who evaluated him later that same day; looked at his hip MRI and informed us that Jaxson was a healthy boy; bones are great, hips are perfect, and spine is aligned.

Thank you all for your love and support and for sending positive thoughts our way as we uncover all the steps in our healing journey.

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Much Love,

Belmax

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