Summer has come and gone and here we are on the day before the start of fall and we’re finally posting an update…

Sam’s summer has been a whirlwind – filled with fun, family, milestones, and, of course, doctor visits.  Back in June Sam had his first spinal MRI while under anesthesia at Cincinnati Childrens.  It went fairly smoothly and the hospital did not keep him overnight, although he did have some hoarse breathing for several weeks afterward.  At his orthopedic visit to go over the results, the doctor decided that no intervention (surgery or bracing) was needed at this time and we would just see whether his spinal curvature worsens in the coming months.  That month Sam’s cousin Hayley also started babysitting a few times a week so that I was able to stay caught up on my photography work.  She was so helpful and Sam loved playing with her all summer – he really came out of his shell, overcoming some of his stranger danger, and she even taught him to stick out his tongue! 

In July we took Sam to my family reunion in eastern Ohio where a lot of my family got to meet him for the first time.  Considering I was the second youngest one in attendance, Sam got LOTS of attention and learned that he could command an audience.  On the way home from that trip we stopped in Columbus to visit a family with a little girl who also has Metatropic Dysplasia and who is also the same age as Sam.  The odds of there being another child his age with the same diagnosis, let alone one who lives an hour from us, are so slim.  It was definitely a God thing for us to connect with them, and it was so comforting to talk with a family whose journey and day to day life looks so much like our own.  We hung out with them again in August and hope to get together often.  In July Sam was also fitted for a custom supportive stroller which we hope to receive soon, and had a checkup at the sleep clinic where they told us they were happy about his BIPAP use so far.

One of the concerns on Sam’s MRI is the stenosis (narrowing of the spinal cord) in his C1 (first vertebra).  So in August we met with a neuro surgeon at Cincy for the first time who discussed this with us and told us that at some point he will likely need surgery to correct it.  On the one had we are concerned, because any spinal surgery can be complicated and risky.  But on the other hand, the surgeon explained to us that Sam’s stenosis could be attributing to a his speech and motor delays, and even some of his sleep apnea.  We’ll want to have the doctors at Johns Hopkins weigh in on this too, but it does seem like C1 surgery will be helpful long term.  Which brings us to September…

We’re making the drive back out to Johns Hopkins in Baltimore this Sunday (9/22) where Sam will have a series of appointments on Monday, Tuesday and Wednesday (genetics, orthopedics, pulmonary, neuro surgery, and likely another MRI and x-rays).  We are nervous about what we’ll learn at these appointments, and also anxious to hear what kinds of treatments they’ll present for the next 6-12 months.

Earlier in September Sam also had a checkup with Cincy’s NICU follow up clinic which included an appointment with an audiologist.  Sam did well with some of the audiology tests, but not all of them so he will be tested again in three months.  Progressive hearing loss is associated with MD, so it’s definitely something we’re concerned about.  Unfortunately he also spent a day in the ER (first Dayton then taken by ambulance to Cincy), as a result of a lowered heart rate while he was sleeping for a couple of nights in a row.  After an exhausting day spent at two hospitals, doctors were not able to figure out what was causing it and ruled out a heart problem with an EKG.  The best they could determine was that he may just have a lower resting heart rate and gave us some things to look for that would be cause for concern.  Since those couple of days it hasn’t happened again and Sam has not had any other issues.

Even though Sam’s summer has been filled with lots of doctor visits, he’s also had plenty of time for fun too.  He had a lot of visits from family, played outside in his kiddie pool, went to his first Reds game, had play dates with his neighbor from the NICU, and spent a week at the lake with my family.  He continues to never miss a meal and wants to try anything and everything – if it’s on the table, he wants to taste it!  Although he’s not talking, he does understand A LOT of words!  He knows a few signs and we’re trying to teach him even more.  Sam still puts in plenty of time at his therapy sessions (OT and PT each once a week) and has mastered the army crawl and is now pulling up to and cruising on furniture.  He still behind in speech and motor skills, but he’s progressing and his therapists are happy with all he’s doing.  We can tell that Sam is really trying hard to be independently mobile and he always has us on our toes (since he’s at risk for spine injuries, we can’t let him fall quite like you would with a typical one year old who is learning to walk).  He’s clever and silly and his smile fills our hearts with joy.  Despite the challenges he faces, he is our unstoppable Sam!

Please be praying for our trip to Baltimore and for positive news/results from those appointments.  We’ll be staying three nights at the Ronald McDonald house there and then spending two nights in Pennsylvania on the way home to spend some time together as a family – relaxing and going to a zoo!  We also ask that you continue to pray for Samuel’s growth and development, for the health of his spine and for his breathing/apnea.  And lastly for Jim and I – for peace and guidance, as each day brings about its own challenges and we do the best we can for Sam as his parents. 

Back to Baltimore

September 20, 2019

By

Liz

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  1. Nikki Fontanetta

    September 30th, 2019 at 5:32 pm

    Praying for sweet Sam. Praying for both of you! I love the positive perspective. Keep it up. Speaking of up, stay filled up you two. You can’t pour from an empty cup. Sending giant hugs and love!

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