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| Alistair in Disneyland in April! |
"Happy New Year! 2017...wow, it's been a while! It is amazing to think midway through this year we will be 2 years out from our inital journey and the reason for this blog. Today has been a weird day. I got onto Facebook this morning and was doing my usual scrolling, skipping all the annoying news stories and politics and seeing what people have been up to in the last 15 hours. I came upon a post from the Mayo Clinic - Ebstein's Anomaly page. It was a video of a conversation/interview between Dr. Dearani (Alistair's surgeon) and another member of the Cardiology team. They discuss in depth about Ebstein's Anomaly. "
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| Enjoying Lake Winnepasaukee in July |
I sat down to write that on News Year's Day...and then got pulled away yet again. I don't know how many times I have thought about updating this blog, thinking I needed to let people know about something or just plain feeling guilty about leaving everyone hanging on and providing nothing! On the one hand, time is flying by and there seems to be less and less time to do things. On the other hand...we are doing things!! Alistair still has therapies and still struggles with fine motor skills, especially in his arms and hands, but we haven't let that stop us!
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| Alistair and Gillian at Camp Colam in August |
Where to begin...well, let me finish my thought on the first paragraph. That video and a subsequent posting by the page caused me to feel anxious and took my breath away. I watched a bit of the video and had to stop because hearing his voice was making my heart race. Seth wouldn't even entertain the thought of watching it. Yesterday, we were driving by Children's and saw a couple cross the street, wearing their orange parent lanyards, going for a walk to get some fresh air and a break from the hospital (or at least that is what we inferred). Neither of us said anything about them as we drove by, but then Seth said, "I feel..." and before he could answer I said, "sick to your stomach?" And he concurred. We are almost 2 years out from that whole ordeal and it is amazing how something so small and unimportant as an orange lanyard can bring it all back in a sudden tidal wave of memories and feelings.
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| Alistair went flying with our neighbor in July! |
Today is Alistair's 11th birthday! 11 years old! I posted on Instagram and Facebook and spoke about the day he was born, the day it all started. I said, "never one to keep things boring, we set off on this adventure in a whirlwind." That morning was already chaotic in my mind. I was heading out to my appointment and then was meeting Carolyn at Costco. I had to buy all the food and drinks for my office's Open House that night. I asked Carolyn to help me because I wasn't allowed to lift anything, so I needed help with all the cases of drinks I was buying...plus the company is always appreciated!
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| Thanksgiving at the ocean - camping! |
I got to my doctor's appointment and got set-up in the room for a non-stress test. I pulled up my shirt, they placed a strap around my middle and turned on the machine to listen for the baby to move while I got "comfortable" on the table. After about 5 minutes and no movement, I was instructed to roll to one side...then to the other side...then back to my back. The nurse placed an alarm clock on my stomach and set it off, prodded my stomach a bit. Nothing...no response from the tenent! She left the room with the paper read out. She came back about 2 minutes later and with a huge smile and happy, shiny eyes she said, "You are going to meet your son today!!!!!!" I just looked at her and burst into tears! "I can't, I have to get food for work! I don't have anything packed! Sadie is home by herself! Seth is at work!" She grabbed my arms, got about 6 inches from my face and said, "none of that matters now!" Then she had me go down the hall to the sonographer's room to have an ultrasound to confirm that Alistair was done being inside. In the meantime they called Seth, who made a new land speed record across 520 and up 405, and was there by the time I was done with the ultrasound. We sat with the doctor who explained to us that Alistair was safe, but needed to come out. He wasn't going to tolerate being inside for much longer. They instructed us to walk across the courtyard to the hospital and get checked in. We did so and got right into a room. The first thing they did was put a monitor on my stomach and then were working away at getting an IV started so they could get me started on petocin. The midwife grabbed the read out of the fetal monitor and left the room. Then she came back pretty quick, announced that Alistair wasn't going to tolerate waiting for me to dialte to give birth and started about preparing me for an emergency c-section. I walked to the OR. I looked down the hall as I left my room and saw my parents sitting there. They also made new land speed records from Tacoma. They waved and wished us luck!
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| Alistair plays goalie for the Inglemoor Vikings |
Alistair was born with little excitement, other than it being 4 weeks early! We knew he had a heart condition 20 weeks into the pregnancy and knew the plan when he was born. Once they did all the necessary first minutes tests in the OR, they took him to the NICU (Seth followed) to continue with the more in-depth tests and to get him ready to be transferred to Children's. I was brought back to my room where my parents were waiting. I don't honestly remember much after that, but do remember when the transfer team brought Alistair in his little travel isolette to my room so I could see him before they left.
In the year since I last posted, Alistair has made great gains in his recovery. He is down to PT every 3 weeks, due in a large part to the strength and endurance he has built playing lacrosse this year! He no longer has speech therapy outside of school and the little bit he has in school is enough to help tool the little things. He still has OT both in and out of school weekly. He still cannot write well enough, or long enough, to do it alone. His hands get tired quickly. He still has his para at school. We are hoping he can regain enough strength and stamina to not need a para next year in middle school, but that is yet to be seen! He sees Dr. Apkon on Thursday. He is beginning to posture a bit again, especially with his right arm. But, unlike last year, he can overcome it on his own and it isn't taking over. However, I would like to not see that!
Heart-wise, he is doing great! His heart is still recovering from the years of overwork it did. At his last appointment in December, Dr. Lewin put Alistair on a blood pressure medicine to give his heart a little break and help with blood flow. He sees Dr. Lewin later this month. It will be interesting to see if that has helped at all.
We have finally started to see some benefits to why we did all of this in the first place. Like I mentioned before, Alistair is playing lacrosse this year. He seems to have more energy and interest in being active. While he still doesn't move that fast, he gets out there and moves and runs. We got him a new bike for his birthday yesterday. He was riding it back and forth to the park with the neighbor kids...the exact thing I was lamenting he didn't want to do 2 years ago because it made him tired! It is really nice to see this. It has been so hard to feel good about making this decision having to deal with the huge and unplanned toll it took on our family.
Life is good and life is busy! School is almost out and summer is upon us. We are looking forward to a summer full of camps, camping and weekend adventures! With a few appointments upon us, I will be sure to check-in...I promise!
