Thursday, October 15, 2015

6 Month Medical Update

I haven't posted much about Jack's medical issues so I figured I'd give an update.  There has been a lot of activity:
  • Regular monthly pediatrician visits and shots
  • Twice weekly physical therapy through Early Intervention
  • Audiologist has administered 4 hearing tests since birth and confirmed he has "moderate" hearing loss in each ear (on a scale of slight-mild-moderate-severe)
  • Nephrologist (Kidney Specialist) has seen evidence of an issue with his one kidney: a "reflux" effect where some of the urine output flows back into the kidney therefore increasing chances of reoccurring kidney infections
  • Otolaryngologist (Ear/Nose/Throat Specialist) determined he may need surgery to remove tonsils and adenoids (and have ear tubes placed at the same time as he is prone to reoccurring ear infections)
  • He had an overnight sleep study done at Boston Children's Hospital last week and we are waiting for the results to see if he has sleep apnea. If he does we are rooting for "obstructive" apnea as that would likely get better with the adenoidectomy, vs. "central" apnea which would be a bigger issue as that would mean his brain is not telling his body to consistently breathe while asleep
  • Geneticist has referred us to a Neurosurgeon for an MRI to see if a certain area of his neck is causing spinal compression as we are beginning to see some evidence of possible nerve damage. If so, he will need to have decompression surgery on his spine at the base of his neck
  • Appt scheduled with Orthopedic surgeon to examine kyphosis of his spine, bowing of the legs, and to ensure proper hip alignment

I think that's all of it. We have seen a LOT of doctors in 6 months. His pediatrician, geneticist, nephrologist, and physical therapists are through the hospital here in NH but I've asked for referrals for specific doctors (otolaryngologist, audiologist, neurosurgeon, orthopedic surgeon) at Boston Children's Hospital based on recommendations from other parents of little people. It has been quite a juggling act to get the different hospitals and doctors to interact, share info, xrays, films, etc. In certain instances we've also reached out to the skeletal dysplasia experts who work out of Wilmington, DE for second (or third) opinions. Most doctors do not have experience treating little people (and many doctors have differing opinions just to make it MORE confusing) so we've had to make certain judgment calls as parents new to the world of dwarfism on whether or not we think a certain doctor knows what s/he's doing (and unfortunately, in certain cases, they don't seem to). I've had to be "That Person" who demands more in depth information and further testing and referrals to other doctors. But it's just the name of the game I guess. In addition, we've had issues with insurance because once I quit my job Jack and I went onto my husband's insurance which has been a gigantic pain in the ass. In the last 6 months I have had to learn a LOT of new things not just about dwarfism, but about how hospitals operate, interacting with medical staff, tricks to get what you want, how to advocate for yourself, navigating insurance red-tape...you name it.  This is my full time job. Now I'm amused that I contemplated going to back to work after maternity leave.

Jack has been a champ through it all. He really is awesome. Here he is during last week's sleep study:

We STILL cannot get all the adhesive and gunk out of his hair from all the electrodes they put on him so I think we're going to have to chop some of his sweet little locks :-(

The potential surgeries (and even just the MRI) are scary for us because complications with anesthesia are common for little people.  I'm trying not to think about that right now. These days I don't think much beyond the next appointment. If I think too much I might have a hard time moving forward. So instead, we are just plugging along. This is now my reality and my new title is "super-mom" and "advocate". I'm also now "educator" since very few people know anything about dwarfism so I'm working on that.  It's interesting because I'm just learning as I go and trying to spread the knowledge. I honestly don't know what I would do without my LP (little people) groups on facebook.  They have been my lifeline and my guidance in navigating this whole new world.






9 comments:

  1. He is such a cutie pie!! Before you cut his gorgeous hair, here's a tip...my daughter has had three sleep studies and has looooong hair. We got a tip from our nurse and it worked like a charm - just rub a generous amount of oil (we used olive oil, but you could use any food oil or even baby oil) and covered it with a hooded towel for about 15-30 minutes (sometimes we got distracted...) and then washed her hair. Sometimes it took an extra round to get all of the really stubborn stuff out, but her hair was soft and shiny when we were all done, and we did not have to cut any off.

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    1. Thank you!! We have been using coconut oil which has been helping a bit but maybe the missing link is the hooded towel! If that doesn't work I'll do the same with olive oil. Thanks!!

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  2. +1 on super mom

    You're always in my thoughts and prayers.

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  3. He is one of the sweetest babies I have ever seen. You are the best mom he could ever ask for.

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  4. Best mom ever. You inspire me everyday (seriously). And your little guy is in my prayers. What a strong baby! Also, this sounds weird, but the oil that they pack in those little at home waxing kits may work. I spilt wax all over the floor and it got everything off, easy. I also use it to get adhesive out of my dogs hair when she needs bandages.

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  5. You are a rock star. You are doing such an amazing job. You have so much on your plate, but you're handling it so well. I'm sure that some days (most days?) it doesn't feel that way to you, but please believe me - you rule. You guys are always in my thoughts and prayers <3

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  6. You are doing an amazing job. Being a Mom of a child with a chronic medical condition is loke entering a whole new world. I know this wasn't what you pictured for yourself or for Jack, but you've handled it with such grace. You have such a beautiful family.

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  7. I admire you so much. You are the strongest person that I know, and I've been saying that for a while now! You truly are super mom, and Jack is so beyond lucky to have you as his mom. I am always thinking of you all and sending all my love and strength and praying for the best for you all. Love you <3

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