Saturday, February 26, 2011

A good week.

We started off our week with a first in the morning appointment with the developmental pediatrician on Monday. I usually don't concern myself too much with this appointment. It's a once a year meeting, if we're lucky, because she is always booked solid. However, this time it had been almost 2 years since our last appointment due to having to cancel while we were inpatient last spring. It went well. Wyatt showed off all his smarts. She talked with him and us while tyring to get a feel for the issues at hand. Since there was so much to discuss she didn't score his testing in the room with us, but commented that he was well above his age level in some areas. His difficulties lie more in the area of expressing, being able to get the words and knowledge that is in there out when he wishes, explanations, greetings and such. She feels he struggles with pragmatic speech. We didn't ask her to explain then and there, as we knew we'd have time to ask questions after receiving her report, but I did look it up once at home. It's interesting. And makes so much sense when thinking of our boy. Early on we prepared ourselves and were told that Wyatt had PDD, or was on the autistic spectrum. He's always had "quirks" but never really fit into the spectrum 'neatly.' The diagnosis disappeared as he began to develop and as more concerning issues presented themselves. But this piece that has been brought to our attention, pragmatic speech, makes sense. I'm anxious to read her full report and recommendations. And I already made our follow up appointment, the first available just as the doctor told us to ask for, scheduled for the middle of next October. Like I said, she's booked solid.

I then spent the next few days anxious and nervous about an upcoming appointment, which we had Thursday. We were meeting with a pediatrician. He works within a group of pediatricians at the Children's hospital that specialize in the care of children whose needs are more complex and critical care. Wyatt's pediatrician declared early on that she didn't know how to help, didn't know anything about the issues that were arising and backed out of Wyatt's care pretty quickly years ago. She is great with the typical childhood illnesses, well child check-ups and referring us to a specialty when needed. And we still check in every 6 months or after significant changes in his care, but with the type of care that Wyatt is requiring we need someone who is familiar talking with specialists (and won't hesitate to do so), knows the medical issues that we're dealing with and, even better, is in the hospital that we frequently visit. We had originally met this doctor back in the spring, during our extended stay at the hospital. One of his co-workers was assigned as Wyatt's doctor, but as we took up residence in Room 1 his assigned doctor did have off a few days and or was working at a different hospital. And during those times we saw one of her colleagues, which is when we met Dr. R. However, that was not the first time that I had heard his name.

Even though we had met him while inpatient, heard great things about him from other families who raved about the care they and their child receive(d) from him, I was still not relieved of these feelings. We've been disappointed by many doctors over the 5 years that Mitochondrial disease has been mentioned and suspected as a diagnosis for our boy. It left me with an anxiety, of sorts. I tend to put all my hope into these appointments with someone who we've been told is a great doctor...only to be let down and left with none of the help that we were hoping for. It can be frustrating and crushing when you're searching for help for your child. Naturally, this leaves me with an uneasiness when going into a situation similar to those that we experienced in the past. I didn't think we'd be disappointed by this doctor, but the feelings still lingered in the back of my mind.

Thankfully, it was a good appointment. We threw as much information to him as possible in the time that we had available. Certainly, we couldn't cover all that needed to be discussed and he left the room commenting about the amount of reading that's in his future, referring to Wyatt's computerized medical chart. But overall we left feeling good about the meeting. Feeling that he's capable of learning our son's body as well as we know it. Hoping that he can shed light on areas that are confusing and be the center point of contact in this medical team that surrounds our amazing boy.

We did quickly talk pain and he gave us his thoughts about where the pain is coming from and why.  We're restarting a med that was tried just a few months ago, amitryptaline, but at a much higher dose. He really thinks it will give some relief to his migraines and seemingly continuous stomach pain. His muscles are deteriorating, breaking down....and that hurts. When in a bad spell of muscle pain he did say we could try a few things to see if it would help. And he has a few more options in mind beyond what we discussed.

Beyond our appointments this week we were able to sign in to math class via Wyatt's laptop and learn with the class, like we usually try to do each week. But this time he had free time to chat to many of classmates as they one by one came up to the receiver and told him jokes that they had picked out of books. He laughed and enjoyed the time socializing with his peers. I love seeing this boy smile! His teacher also made a trip to our home to work on classwork, as usually happens, but he brought a special friend along this time as you can see by the pictures. Dot, the class pet, came for a visit. She/he is a California King snake and 3 feet long. I certainly wasn't about to hold her, snakes are not my favorite living creature, but she was kind of cute to look at as she tied herself into a knot while Maggie and Wyatt held her. Jilly hid on the steps behind the banister for much of the time that Dot was out of her home, a small glass tank. She wanted nothing to do with her unless she was enclosed in her home. I even tried bargaining with her, telling her that I would pet Dot with her if she wanted. It didn't work, but she happily stuck her nose right up to the glass observing dot in her home. It was a nice visit...Wyatt and Maggie were thrilled to see and hold Dot again! This week was a good one, visiting snake and all.

* Please keep the Agnew family in your prayers. Their sweet little girl, Maggie, has mitochondrial disease. Her parents and doctors are trying to keep her comfortable and struggling to do so right now.
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