I’m not exactly sure how to process this trip to Boston. I know that we loved it. We loved how comfortable each doctor was with our little boy and with Apert Syndrome. It was really humbling to be there on “craniofacial day” with the waiting room full of kids all ages with various problems. It made me feel small; but in a good way… Like I’m not the first to walk this path, nor will I be the last. Let me try to recall snippets from the past 5 days…
Wednesday – A cool little answer to prayer: Jack’s birth certificate came in the mail today! I know I could have sent for it months ago. But now I have the added joy of praising God when it arrived the day before we fly out. It felt like a blessing on our journey… again – that he would provide our every need. This is a good reminder… for five days later (today) I added our expense report from our trip which was way more than I was anticipating! And I filed away about 10-12 hospital bills and received a letter that our insurance is having problems with a few of them. But God cares! He sees me. He knows my every need and will not leave me alone. My soul needs these reminders. Dear Lord, help us to be wise as serpents and innocent as doves. Help me not give into fear or worry… but cast all my cares on you!
Thursday – We woke up on time but somehow were still rushing out the door 15 minutes late. We caught the tail end of rush hour in chicago and made it there 40 minutes later than we hoped. It took Seth 30 minutes to park the car, ride the bus, then the train, and make it to the front counter. I probably should have helped more – but Jack was hungry and needing all my attention. So, we tried to check our bags with only 25 minutes to reach our gate. My stomach hurt with anxiety as I knew we werent going to make it. We had missed the deadline to check our bags and missed our flight.
We were welcomed to Boston by my dear cousin and her little boy who made us feel right at home in the big city, later that afternoon. We toured around in the frigid cold, warmed up with some coffee and had a wonderful fajita dinner to complete the night! (Mexican food just happens to be my favorite!)
Friday – We got to ride the subway (thank you Katie!) which always makes me feel like I am in a movie for some reason.
It was a beautiful sunny cold day as we wandered down the street looking for food and coffee in the medical district. We already were feeling alive this morning due to the brisk walk and anticipation of the day. It was such a nice change of pace for us too to be outside and out of our normal routine. Our first doctor was the craniofacial opthamologist. I honestly have no clue why eye doctors take so long – but we were there for three hours! Mostly waiting. I think we only spent 30 minutes being assessed. Jack was a pro the whole time. His optic nerve looked good and he was very cooperative and looked everywhere he was supposed to.
The eye doctor said the most comforting words I’ve heard from a doctor thus far, “Compared to other Apert kids, his eyes appear to be extremely normal and will not need surgery.” There were so many things about that statement that warmed my heart. For one, she had enough experience with Apert Syndrome that she knew what was typical. Second, that he would not need sugery for his eyes. Third, that she would help us with his eye swelling/draining problem during his first surgery. It was worth the wait!
Next, we met with the geneticist. One thing she informed us that I thought was interesting was that Apert Syndrome is similar to dwarfism in that the mutation in the gene causes the bones to mature too quickly and that is why they fuse. Dwarfism and Apert Syndrome affect different genes, appropriately. We are at a theoretical higher risk for having more children with Apert Syndrome, but that is not likely. So far, they attribute the change in the DNA to the father’s strand.
The pediatric plastic hand surgeon was next. We were led to a small office where he pulled up Jack’s xray of his hand. I had seen this photo once before and thought that the bones looked more like an xray of teeth than of hands since the fingers were rounded and all jumbled. A previous doctor had told me that she would only be able to create 2-3 fingers on each hand. You can only imagine my surprise when Dr. T, here in Boston zoomed in on the photo and pointed out all 5 fingers! He said with confidence that they almost always can achieve 10 fingers. It will however, require multiple procedures throughout Jack’s young life. He said that we could begin the process as early as next month!
The craniofacial and neurosurgeon met with us as a team. The neurosurgeon shook our hands and without saying anything else, began measuring Jack’s skull. The craniofacial plastic surgeon on the other hand, pulled up Jack’s CT scan and assured us that they will be able to help Jack. The plan at this point is to do the first anterior orbital advancement (release the fused portion of the skull and bring his forehead forward) when Jack is 9-10 months of age. During this surgery, they will actually remove some of the skull to make Jack’s head less tall and a more appropriate size/shape. Oh, I should mention that we will be doing another CT scan in the near future to assess whether or not we can go in during his first hand surgery to create a second nostril for Jack and open up the tear duct for his left eye! This would be a huge answer to prayer for us as it would help his overall breathing, infection control, sleep apnea, etc…
We were one of the last people in the office and left at 6:00 pm.
There were other things that happened as well: we got 3D pictures of Jack’s head which turned out really cute. We were warned that after surgery there is a slight chance that Jack’s eye balls will pop out because of the swelling and shallow eye sockets. We found out that Jack will need a blood transfusion after his skull surgery. We will be staying in the hospital 2 days after his hand surgery and 6 days after his skull surgery if all goes well. We have decided to release Jack’s toes as well. This means that Jack will be wearing 4 casts all at once for three weeks. After the first surgery he will have thumbs and pinkies on each hand, as well as a big toe and pinky toe on each foot 🙂
We ate chinese food and were home by 7:30. All three of us were excited to sprawl out on the king size bed and watch Jack kicking and telling us his thoughts on the day.
Saturday – We were graciously escorted to the airport at 4:15 am to catch our 6:30 flight. The way home was much smoother with very little excitement. (Side note: my parenting advice is that if you are traveling with little kids who normally nap in the afternoon, travel in the morning! Every morning flight has gone great for us while afternoon/evening flights are more of a gamble). We were really really excited to be reunited with our Lucy girl, who proudly showed us around Nana’s house of her accomplishments from the weekend. I did realize that this will be a long year for our family. I am grateful for all the amazing support we have from both of our families and church. I feel bad that Jack has so much attention from medical things. She is getting older every time I look over my shoulder! She learned more words while I was gone. My favorite is “Mama, Watch!” as she jumps from a one inch step 🙂 I fear a little on how this year will affect my Boo girl. She is so impressionable, yes? And, though she won’t remember the specifics of these future days, the impact will be something. I am praying now and remembering that God made children to be resilient, and so – may this make us all stronger.