Many of you have probably seen some pictures and posts on Facebook of our recent trip. We didn’t want to tell everyone that we were going but rather, wait until we got back to give a full update.
Last Tuesday morning we flew out to Pittsburgh for two reasons – First, to see Dr. Escolar (the world known “expert” on MLD) and get some testing. And second, to attend the MLD Family Conference. If you have been following us for awhile, you know that we’ve been up to Pittsburgh 3 times prior to this visit. When Michael was first diagnosed, we went up there every three months. Well, we haven’t been back up there in about a year and half and since the MLD Family conference was being held in Pittsburgh, we thought we might as well kill two birds with one stone.
When Mike and I travel with Michael, we break it up into 4 phases. We try not to get too overwhelmed with the whole traveling thing so in our minds, if we break it up and conquer one phase at a time, we stay a little more calm through the process. Phase 1 was getting to the airport and through security. Phase 2 was getting Michael on the plane and having a smooth ride. Phase 3 is getting him off the plane and getting our luggage. And phase 4 is getting to the car and getting wherever we’re going. Michael did AWESOME through all 4 phases. Not a hiccup, not a delay… nothing. As far as traveling goes, it was as smooth as we could have hoped.
We had our first day of testing on Wednesday. Michael got weighed and measured, got all of his vital signs taken. He saw Dr. Escolar (she couldn’t believe how tall he has gotten!), got his hearing and ears checked. He saw the PT team and they looked at his vision, the range of motion in his joints and what he can and can’t still do. PT also adjusted his wheelchair so he is sitting much straighter and more comfortably. Wednesday was full of good news! His ears and hearing are perfect (although, we are still waiting to hear the results of how he is processing what he is hearing). Dr. E said Michael looks REALLY good. She said she has never heard an MLD kid with such clear lungs and airway. I suction Michael about a million times a day so I guess it is paying off! The range of motion in his arms and legs are good – he has good overall tone. Some of the best news we got is that they think Michael can still see! He can’t see too well but we thought he was pretty much blind. The therapist explained that most Leukodystrophy kids suffer from Cortical Visual Impairment. He can see better in dim light and he can see reds and yellows more easily. They recommended some fun apps and things we can do with him to keep him stimulated.
Wednesday night we ordered room service in the hotel and just relaxed. Our Thursday appointments didn’t start until 12:00pm so we slept in, exercised and then headed to the hospital. On the schedule for Thursday was an MRI and lumbar spinal tap. Michael needed to be “put under” for these procedures. We stayed with Michael until he fell asleep and then went out to the waiting room. We waited for about an hour before we saw Dr. Escolar come out. We were surprised to see her and she had a “look” on her face. We knew something was up…
She explained that she couldn’t do the spinal tap because Michael had a large hematoma around his brain. Basically, his brain is bleeding. She is a very compassionate doctor so she explained everything very well and took her time talking to us. She said she needed to consult with the Neurosurgeon to determine what to do for Michael. After talking to about 5 different doctors, we learned that this bleed is not acute, meaning it didn’t just happen. It’s more chronic – kind of like it a slow leak that builds up over time. Dr. Escolar thinks that the shunt he had placed (as a result of his hydrocephalus last November) drained the fluid too quickly causing a blood vessel in his brain to burst. The neurosurgeons actually wanted to admit Michael, do another CT scan and then, surgery. If that had happened, we would still be in Pittsburgh and would continue to stay there for over a week. Dr. E really communicated with the doctors on our behalf and explained how different these kids are and that we need to be conservative – we can’t just jump into brain surgery! They all recommended (including Dr. E) that we see our neurosurgeon here immediately when we get home. The first appointment we could get was for this Tuesday morning. They will look at the MRI that was done in Pittsburgh and make a recommendation. Michael will probably be having surgery sometime this week :(
The conference started Friday morning. I’ll keep this part of my update a little shorter. I’ll just say – it was GREAT! Just when you think you know all you need to know, you learn something new! All of the parents of the MLD kids are so knowledgeable and amazing. We learned about new research and treatments taking place (unfortunately, none of the treatments would help Michael), ways to enrich and improve Michael’s quality of life. We met so many amazing people and let me just tell you (again) how beautiful these little Earth angels are! There were about 12 or 13 MLD sufferers, most of them having the late-infantile version like Michael. Michael had an amazing time. They provide a respite room with lots of volunteers to keep the kids occupied and active. They did all kinds of crafts, played games, had story time and even live music! It gave Mike and I piece of Mind that we could attend the conference meetings and that Michael was safe and having fun. The picture in this post is of Michael all dressed up for the Saturday night “Glow Party” and of the three of us at the Butterfly Release Ceremony. This ceremony is done every year to honor the MLD sufferers that have passed away over the last year. There was such a long list of names…very sad….
It is so good to be home. We are a little on edge not knowing what this week will bring. Obviously, we are just hoping that Michael will be okay…
As always, thank you for sticking with us. I will update again when we know more about his brain bleed. Love to you all!