Our Healing Journey: Appointments

Today (11.17.14) we had 3 different appointments. The pediatric orthopedic that we saw last week recommended we see a physiatrist and go for a physical therapy evaluation to see what Jaxson’s needs may be from a physical therapist standpoint. So, our first appointment today was with a physical therapist named Alexandra at Mountainside Children’s Hospital. We are also trying to schedule an appointment with a physiatrist as soon as possible but that takes a little longer as they are booked from what I was told; however, physiatrists  work closely with physical therapists and from meeting Ali today I feel that we are in pretty good hands in that regard.

Ali asked me a bunch of questions and ran several tests on Jaxson, particularly, she tested his vestibular system functioning which I greatly appreciated as I’ve been trying to tell all these specialists (the gazillion ones I feel we’ve already been to) that the problem is coming from his vestibular, inner-ear systems as having been damaged by the gentimicin. They mainly ignore me. What do I know? I’m just a worried mom who has lived with my child from birth and saw the massive unnecessary medical intervention he underwent because I developed a slight maternal fever during labor. Crazy newborn intervention needs to stop.

Crazy interventions during labor in general need to stop as well. The Business of Being Born documentary portrays all that can go wrong when an uninformed mother to be like me at that point in my life, goes into labor. I experienced this first hand. I was strapped to a bed as soon as I got to the hospital and given only ice to eat for almost 20 hours. WTH? I felt great, what was the problem, why was I strapped to a hospital bed from the moment I got there and immediately given pitocin without my knowledge. “Hospital policy” I was told. You can’t walk around because the baby could just fall out. hahahahah!!! Seriously, wouldn’t I have to push?  Anyway, what a nightmare that was. I rather just focus on positive things and not re-live that experience in my mind. Mind you, I was a super healthy 26 year old with a beautiful, perfect pregnancy throughout and just made my way to the hospital because my water broke and excitement told me, “rush to the hospital”. Bad idea, I should have probably stayed home and waited until contractions began at the very least.

They took Jaxson’s temperature rectally about 3 days after he was born as their “routine nurse check up” while doing their rounds (we were scheduled to be in the hospital for 4 days since I ended up with a c-section not surprisingly, although I did request the c-section). Anyway, I specially remember our room being extremely hot on this particular day and I had Jaxson perhaps a little too bundled. The temperature was 100.3 rectally, which is technically not considered a fever by most medical standards, that’s actually right at the cusp, and they should have retested his temperature before hooking him up to an IV again with Gentimicin. The first 3 days he was automatically given gentimicin because of my “slight maternal fever”.  They began running a bunch of test to see if there was an infection. These tests included a spinal tap which his father and I vehemently objected to no avail. Again, all tests results came back within 2-3 days negative but they continued to give my newborn gentimicin for a total of 8 days and wanted to keep him an extra two days on the drug. We refused and had to sign a waiver to release him from the hospital. I often wonder if those extra two days would have made him completely deaf. However, since he passed his newborn hearing screening (as gentimicin can take months to show any side effects) and he met all his milestones on time, Jaxson’s severe hearing loss was not confirmed until he was about 3.5 years old (I began inquiring about his verbal development not being up to par when he was about 2.5 years old, and it took me a year to finally have an audiologist confirm that I was indeed correct, he has hearing loss) and given the fact that he received his hearing aids by the time he was almost 4 years old which is super late, he is verbally almost at age level and continues to improve. I believe my child was born perfectly fine and I hope that all the genetic testing we have to do soon come back clear.

Alright so back to the appointments now that I’ve shared a little newborn medical history. Ali, the physical therapist informed me that his vestibular system was definitely not working to its full potential and that based on the fact that he has sensorineural hearing loss, she already suspected that regarding his balance issues. She explained that he clearly has balance issues but that on top of that, his hamstrings are very tight and so are his heels. He is pronating his feet as he is flat footed, one leg is slightly longer than the other, and he is a little low muscle-toned. Geez! She will have her report ready as soon as possible which will include a recommendation for physical therapy twice a week targeted at strengthening his other senses in order to compensate for the vestibular/inner ear dysfunction which directly affects balance and he needs inserts/orthotics for his feet.

Immediately after this appointment, we headed back down to Princeton and made our way to the chiropractor’s office. He quickly assessed Jaxson, stated that one leg was slightly longer than the other and hence he was not in alignment. He adjusted Jaxson and put his legs back into place. The legs are now symmetrical and I actually did see the difference which made me feel a lot better.

After the chiropractor, we drove down to Jaxson’s school where I had a meeting with his teachers, the school director, case manager from our school district (Jaxson attends a private auditory/oral pre-school for the deaf and hard of hearing- he will transition into the regular school system next Fall), physical therapist and occupational therapists. He has physical and occupational therapy in school once a week for 30 minutes.

I was very grateful for the school meeting. I had sent them a copy of the MRI and expressed all my concerns at the moment although we still do not have a diagnosis. We do not know what the underlying issue may be and a meeting was put in place by the school immediately in order to discuss things with me.  Well, Jaxson’s private school had their radiologist look at the MRI and it is my understanding that the MRI looked normal to him Thank God. The enhancements to some of the cranial nerves may have been there since birth and not necessarily indicative of any disease, especially if there is no basis to compare the MRI to, there is no previous MRI. Then the school’s director asked if his EARS have been check for an inner ear, fluid infection. We already know Jaxson has had a history of fluid in his ears and repeated infections. Ear infections that cause no fever and therefore it’s hard for me to know. I was so worried that my first step was the ER instead of the ENT. Anyway, this gave me a sense of relief and I’m hoping this is the case and not something more serious. If I remember correctly, the Princeton school system also had their own specialist look at the MRI with a similar opinion.

The school director got on the phone immediately with the school audiologist to get her recommendations for my next step in this puzzle. In the meantime, I scheduled an ENT appointment immediately. The school audiologist called me and suggested that Jaxson be seen by a neurotologist to address everything that may be causing the imbalance. I must say though, Jaxson’s balance has stabilized for the most part with a few falls here and there, mainly when he is running fast. However, when the falls were worse, he did have a cold and was pretty congested which could really make sense regarding the fluid in the ears. Aside from making the neurotologist appointment, the audiologist suggested that it could be labyrinthitis and that I need to rule all these things out. I looked up labyrinthitis and that seems very possible as Jaxson has recently complained of nausea, specially while riding in the car. His teachers also expressed that his balance is usually a bit worse when he wakes up from nap and then stabilizes. Could it be because while he is sleeping the fluid builds up more to one side? I also think it has to do with his hamstrings being tight and having to warm up as he wakes up and walks around. Maybe a combination of both?

Thank you for your positive thoughts and support while we figure this all out for the best possible outcome.

Much Love,

Belmax

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