He is 10 lbs 10 oz and a far cry from that little fragile 6lb nugget that had three surgeries in his first two weeks of life.
This is really the first spina bifida specific thing we have done. Everything else up to this point (other than the cathing that we do every day, but that has become as routine as changing a diaper so I don't count it as out of the ordinary) has been just baby stuff. So this is really the first step down our spina bifida path.
We arrived at clinic and were waiting in the lobby area with some other families and it occurred to me, after the fact unfortunately, that that was a glimpse into our future. Monday afternoons in the building are dedicated to only spina bifida patients, so everyone we were waiting with had been on the journey we were about to start. I wish that had come to me sooner so I could have soaked that up more. It was definitely another what-was-I-so-afraid-of moment waiting to happen. The young kids were playing on the various toys in the room. The teenage patients were on their phones. It seems at every turn there is a reminder that while in fact spina bifida is going to make Thomas' life different than we had pictured, it doesn't mean it will be worse or missing some vital component. Different isn't wrong, it's just different.
We had a very quick wait, then we were taken to our room. We were in this room for 4 hours as each specialist took their turn to come in and meet us, in some cases just to introduce themselves, since we don't need their expertise just yet. It felt as if we were meeting part of our family for the first time. These people will be involved, in a very major way, in Thomas' life for the next 20 or so years. Helping to make decisions and get to the bottom of problems. It was comforting to meet all of them and really to feel a kinship with them, knowing while this is Thomas' journey to take, he (and we) won't be alone. There will be people who know him and who are invested in him and have watched him grow and who have seen others go through it that will help us along the way.
The physical medicine doctor was first. She really liked his movement and strength. While his hips didn't seem quite as strong as we would have liked, she sees no reason he won't be able to walk with the aid of AFOs (ankle foot orthotics). He didn't have much flexion in either foot and that would give him balance issues, so the braces would help to support him from falling forward. I thought this was great news. Although if he needs a wheelchair that would be fine, but if this is one less challenge he has to face, that is great news. Next up was the dietician who said that his height to weight ratio was good and he was in the 85 percentile (which is higher than either John or David were). However when all is said and done, he will most likely be on the shorter side of average as far as height since that is pretty common in people with spina bifida. For this reason, we need to be very conscious of his weight. Between the possible decreased mobility and shortness, we don't want him to be too heavy that it keeps him from maximum movement and holds back milestones.
Next up was the developmental pediatrician and he said all looks good and we should expect normal milestones as far as eye contact and recognizing our faces and smiling very soon.
Urology was the next through the door and they are really the ones right now with the most to say. We have been cathing Thomas 4x/day and we don't get much, but we do get some, so I wasn't sure what the implications of that were. When the urology fellow went to examine him, Thomas, of course, peed on him and it was funny since he didn't recoil away or jump, he watched it and commented on the strength of stream. This is the first time I have seen someone examine the little stream of pee as it is hitting them and that was kind of comical, must be a perk of the job! He liked the strength of the stream because that means there isn't any obstacles along the urethra blocking the flow. When our Urologist came in he explained that although our numbers are low for cathing he doesn't want us to pull back on it quite yet and go to 2x/day because he wants to wait to do a urodynamics test when Thomas is 6 months of age. This test will consist of a catheter placed in the bladder and in the rectum to measure the pressures as the bladder fills. This will give us a better idea on how/if the bladder contracts. We know from the VCUG test he did at birth that his bladder was only partially emptying itself, but we don't know if it empties due to the pressure of being full or not. Also he would rather us stay cathing if there is a chance we will have to later in Thomas' life, since starting it up when a kid is older is much harder.
Then we met the 'poop' doctor, as she calls herself, this was more of a meet and greet since as a newborn there isn't much we do for poop other than catch it in the diaper. We need to watch for constipation, but that's really about it. Later down the road she will help us with a bowel management program if we need it so he can be socially continent.
We also met with a social worker who explained the insurance and financial side of all of this and how we can apply for various assistance programs and what to do about bills.
And that was it for the day. It was a long day but very informative and Thomas was, of course, a champ as people poked and prodded at him all day long. We go back again in January for our next clinic, which will include the urodynamics and VCUG testing and we will meet with a neurosurgeon as well that time as part of our clinic team. Our journey of a thousand miles started today with our first step in the spina bifida world!
