Here, Oliver demonstrates a wide range of emotions, from happy to sad. What a talented little guy!
So we had our first day of spina bifida clinic last week. What a loooong day! Spina bifida clinic is a department at CHOP designed to allow us to see several doctors in one visit. We get to see a pediatrician, general nurse who specializes in spina bifida, a physical therapist, and a social worker. We also try to schedule other appointments that day, so we also will often have appointments with orthopedics and neurosurgery. Last Wednesday it started out with ortho, which is always an adventure. I waited there so long that they told me to just go to my clinic appointment and come back later. So I went and checked in with clinic and sat there for about 40 minutes. Finally they called me in, took Oliver's height and weight, and put me in an exam room to wait. Hmmm. About 20 minutes later the pediatrician came in. She gave him a quick look and announced him in good health. Something I always like to hear. Then she left, promising that another doctor would be in soon. I just waited.
I was just about to call neurosurgery to tell them I would be late, when one of the SB nurses stopped in and told me to just go up there and come back and finish clinic later. Okay -- so now I left ortho to go to clinic and left clinic to go to neurosurgery. All this and I had only seen one doctor so far. So I went up to neurosurgery, and you can guess what happened there -- I waited.
The waiting room at neuro was a little different. It was packed and loud. I think that the nature of the injuries/conditions that brings many people to neurosurgery are a bit more obvious than other places in the hospital -- a fact that lent itself to a more frantic and agitated vibe. I was feeling sorry for myself because it was 1:30, I was starving, alone (Tim had to work) and tired of waiting, when I saw a woman with three kids struggling at the check-out counter. She had a twin in a stroller, a twin in a sling on her chest, and then a 3 or 4 year old whose condition seemed to affect his balance, so that we couldn't really walk without some help. I looked at my quiet, sleeping, single baby and realized that my day wasn't really that bad.
I was most excited about the neurosurgery appointment because that is the part of Oliver's condition that I am most concerned about. I lose the most sleep wondering whether or not his soft spot is still soft (if it becomes firm or swollen that is a sign of hydrocephalus and he needs to go to the ER right away). If he needs a shunt and we don't catch it in time, that can lead to developmental delays and cognitive issues. So I was definitely anxious for a professional to weigh in on how he is doing. We met with the nurse practitioner, and she said that Oliver looks really good right now. She said that he will probably still need a shunt, but that she is basing that on statistics, not necessarily Oliver himself. If he gets a shunt, it will not make him any more or less predisposed to any cognitive disabilities -- however, it is nice not to have to have the surgery to insert it or any of the possible complications (infections, malfunction) that go along with it. So for now, he is in the clear.
After neuro, I went back down to clinic. Finally, he got to see some doctors. First we saw the physical therapist. She confirmed that Oliver has feeling in the same places that he has motion. Which means that he has feeling on the front of his legs down to his knees, but not below and nowhere on the back of his legs. She also told me that he will develop like any other baby, learning to roll over and somehow pull to a stand. Once he does that, they will fit him for braces and work with him to learn to walk. He will probably need bracing up to his hips and a walker in order to do so. She said that it is the philosophy of the clinic at CHOP that all kids should get to a standing position and learn the skill of walking, even though it is likely that a wheelchair will be much easier for day to day mobility. But at least this way that have the skill if they want to employ it. Personally, I think whatever gives them the most autonomy is the way to go -- it seems to me that a wheelchair will be a much better choice. But I'm all for giving him choices for later in life.
The rest of the visits were pretty uneventful. Didn't learn much from the nurse or the social worker. But I did get a list of items that contain latex. While I knew that all SB babies are prone to develop latex allergies, I had no idea how many items latex can be found in. As usual, a little information with me is a dangerous thing. So now I'm freaking out -- latex is in diapers, adhesive bandages, matresses, toys, and clothing. How the heck am I supposed to know what is safe and what isn't. There are also referred food allergies that go along with it, including bananas, avocado, and tomato. I always felt bad for parents of kids with food allergies; now I know how they feel.
Whew. So this post is almost as long as my day at clinic. Altogether I was there for 8 hours. But at the end of the day, I couldn't even be aggravated. Everyone there is so nice and helpful. I felt so lucky and blessed to get a clean bill of health for the little man. He was no worse for the wear -- he slept most of the day. And I came home to find out that Mac did not cry when her grandma dropped her off at school. Hooray -- she is finally adjusting. Now I can stop crying after I drop her off, too :)
Speaking of Mac -- she has re-caught the cold that she gave to Oliver in the first place. I think that I just have to burn all of the bed clothes and start over. We are a house of germs. Yuck. Even I'm getting sick.
Other miscellaneous updates:
Sniper is still bad.
Mac is still cute, but increasingly loud.
I'm still breastfeeding -- 7 weeks now. Yay.
The Jets still suck.
I had my first real beer in almost a year -- Beer is still good. Really good.
