[Today was a super-long day, so this is a super-long post!]
Tuesday we came back to Mott Children’s Hospital for Colten’s follow-up cranial ultrasound and long story short, had some movement of appointments for the better. So today (Thursday) Richard and I spent the day in Ann Arbor for Colten’s first “Myelo Clinic”. During clinic, he will see all the specialists – we were told to expect to be at Mott for about 3-4 hours. He is scheduled to see a urologist, social worker, PT/OT, Physical Medicine and Rehabilitationist, orthopaedic, and neurologist. Plus we had our other orthopaedic surgeon appointment moved to today as well at 11:15 AM, before Clinic starts at 12:30 PM.
The older two boys traveled with us today due to my babysitter mistake… I had secured my sister coming into town for the day but had her coming NEXT Thursday. Oops. Lucky for me, a couple former students of mine live down in this area and had their classes cancelled today. So Parker and Max enjoyed the Ann Arbor Hands on Museum, lunch out, a mini tour of U of M including the big spinning square, and a bus ride! Thanks SO much Brynn and Katie!
Before I get into today’s Clinic, we had two appointments yesterday as well (please don’t ask how we get anything else done at this point, because frankly, we REALLY don’t). Lucky for us, those appointments were at home. I love home visiting people – thank you Hayes Green Beach visiting nurses (yay Trish!) and EarlyOn PTs (yay April!). April and I finalized Colten’s IFSP (Individualized Family Service Plan) today and settled on two primary goals for the next six months. I want him to get his legs to 0 degrees, and I want him to know he has feet. It hit me later that in a way, it’s kind of sad that he will never feel what it is like to have feet. He won’t feel “this little piggy…” He won’t get his feet tickled so much he laughs a big belly laugh. He won’t feel sand between his toes. On the flip side, he won’t ever feel a stubbed toe either. That’s the only “good” thing I can think of right now. Maybe more another day. In the end, it was weird for me to even say, “I want him to KNOW he has feet.”
Now, back to Mott’s. It’s such a weird thing being there. We see so many other kids there – some that look “normal” and others that obviously have it much worse than Colten does, and a ton of children in between those points. I feel for these parents. I don’t know how they do it. There were two girls in the waiting room today – one about 3, the other maybe 7. The three year old was moving all around in her flashy pink wheelchair – she was completely mobile and independent and moved that chair like an extension of her body. She was happy, she was playing. She had trouble reaching something on a table and got caught on something on the floor but never appeared frustrated. She just waited till she got some help or moved onto something else. The seven year old was in a far more complex wheelchair and appeared to have a bag for urine collection and she also had a feeding bag. She was fully harnessed in, including a cradle support for her head. She said nothing, made some noises, and was pretty still the whole time. I’m not sure what, if anything, she can move herself on her body. Her mom looked tired – exhausted. I just wanted to go hug her and ask her to share her story but I’m not sure if people would be creeped out by that or appreciate the opportunity to share. Anyhow, seeing children like that makes Colten’s needs seem so insignificant. And in reality, right now, it’s not like he can use his feet for much anyhow!
We started our appointment rotation at 11:15 am with the orthopaedic surgeon, Dr. Li. This was a waste of time in a good way… all looks good. Glad we got that appointment moved from NEXT week to today with all of his Clinic appointments. I would have been quite irritated if we would have driven out all this way to hear the doctor say, “It looks good, we’ll see him in a year!”
Clinic started at 12:30 PM – Colten weighed in at 10 pounds, 1 ounce, and 21 inches long. This was the first time we got what I feel is a pretty accurate height on the kid. His legs are stretching out much better these days!
At 12:40 PM, Dr. Ramnath with Neurosurgery came in. One of the questions we were hoping to get answered today was Colten’s actual level of defect versus his level of function. The only thing we heard while in our NICU stay was “L3” and we think that is his level of function as people looking at his scans and ultrasounds keep saying how low his myelo looks. So we’re a bit confused and unfortunately Dr. Ramnath wasn’t too keen on the new U of M computer system and wasn’t able to clarify this for us. It really didn’t matter – it is what it is and he will do what he can do regardless, but we would just like to know for our own bank of knowledge.
We did ask about stimulating the feet and calves to get the brain to “know” that those parts are there, and what sort of changes we might be able to expect if any. Dr. Ramnath said we can do all the poking we want but if the nerves from the spine cannot carry a message to the brain, there’s not much we can expect. In other words, even though the brain has plasticity, if the nerves going to the brain aren’t functional, it really doesn’t matter. Of course, he added that you should never give up on hoping there’s a change, just don’t spend all your time making him do something he just isn’t going to do – work with what he can do and focus on that.
Here’s a little humorous glimpse into another part of the conversation…
Richard asked Dr. Ramnath… “One of Kate’s goals for Colten is that he’s aware that he even has feet. Is that something that he knows?” Without missing a beat, Dr. Ramnath replied, “Right now all he knows is that he’s got a damn binky in his mouth!”
We were introduced to an infant treadmill study at this time by one of the nurses. I’ll come back to that in a future post because it’s incredibly interesting and I’m pretty sure we’re going to do it. I know you’re itching to figure out why and how people put infants on treadmills, but you are just going to have to wait!
At 1:30 PM the social worker came in to follow up on some of the related services such as social security, EarlyOn, and various insurance items. We received some very helpful information from him!
Physical Medicine and Rehabilitation (Dr. Green), OT (occupational therapy) and PT (physical therapy) all came in together at 2 PM. They moved Colten around a bit and did some muscle testing. Dr. Green is the one that “gets” to classify Colten’s myelo. He’s still young for a final diagnosis but she did clarify for us that his defect level appears to be S1 (the first, or topmost sacral vertebrae) and that she believes he’s more of an L5 or L4 in function (the bottom portion of the lumbar spine). This is different from the L3 we were told before, however, Dr. Green is confused as to why his feet are “so floppy”. If he was truly L3 his quads would not be nearly so strong as they are. Dr. Green did make a point to say that it doesn’t really matter what his classification or defect or function level is, he’s just Colten and eventually we’ll figure out what he can and cannot do and feel. She will be setting us up with an outpatient PT referral with Sparrow. She wants us to get acquainted with the staff there but isn’t concerned about him doing much PT right now simply because he “needs to just be a baby for a while”. That was refreshing to hear as we already will be doing PT with EarlyOn anyhow.
After that we were sent on our way! Some of the other providers didn’t need to see us today. We go back for our next Clinic appointment in three months and do this all over again. Hopefully we have no shunt issues and no need to take Colten back down there before then.
We ended the day at Volz Chiropractic and Back ‘n Balance Massage for a ThirtyOne party with the wonderful Rhonda Rhines! Thank you Rhonda and all those that attended in person and online. Thank you also to Natasha Roberson and Kyle Volz for the use of your offices!
It’s been very weird to have seemingly random people come forward to offer support – whether it’s in services, fundraising, meals, donations or diapers. We appreciate the unsolicited generosity and are amazed at what strangers and even our own family and friends (who we always knew were awesome anyhow!) have done to make things easier on us during this time. We hope each of you know how thankful we truly are! And in case you don’t, eventually we’ll get all these thank you notes written 🙂 Seriously though – we are confused, humbled, amazed, grateful and overwhelmed by all of this. Thank you!