Aidan is five weeks out from having his spinal fusion. Two titanium rods were placed from his T3 all the way to his pelvis. That’s a lot of metal. His scoliosis was significant. It effected his ability to sit up and to walk and would eventually have compensated his health because of the scrunching of his internal organs. His bottom rib was sitting ON his hip bone. You probably can’t even contort your...
The truth is, the doctor gently stroked Aidan’s hair the entire time he explained recycled blood and intubation. He remarked several times that we’re a team and would make decisions regarding pain control together. The truth is, Aidan’s nurses were exceptional. They were calm and friendly, fully present and competent. They patiently answered our questions and accepted our observations. They encouraged us to call at 2am just to check in if we needed to. The truth...
Last week Garreth and I decided to have a fun, memory making time just with Aidan. These activities can be difficult to plan. What will he really enjoy? What is nearby and accessible? What would be consider a special activity, outside the norm? We decided to go to our local children’s museum, and since we thought it best that he not run over the local children, we put him in his manual chair. Aidan was able to wheel around...
To the ones who rocked my baby when I slept…. To the ones who came into the room when I was crying and offered a kind word, their own story, and a break…. To the ones who asked questions and really listened… To the ones who took the time to explain…. To the ones who took silly, ridiculous pictures of my child wanting to bring a smile to my face… To the ones who were...
Having a child with a disability means dealing with chronic health issues. Most of the time we’re cruising along pacing ourselves just fine, sometimes even forgetting that we’re on a long arduous journey. And sometimes it feels like there’s always something. If it’s not a new set of seizures, then it’s a surgery. If it’s not battling insurance for a bed then it’s trying out a new medication. I’m not doing this alone. Not by...
Aidan is turning thirteen this week and he can’t have birthday cake. As I mentioned yesterday, I will be eating cupcakes because I’m having a tiny pity party. But no cake for Aidan because we have to start to starve him, sort of. At this time last year Aidan was in the hospital having hip surgery while our house was under major construction. This was a big deal, to put it lightly. It was a...
This is Aidan when he was in the hospital still fairly medicated. His Nana did a great job putting together an entire bag of entertainment goodies. The unwrapping kept him occupied for a long time and we have yet to get through the bag because until recently he hasn’t been very awake. (subscribers click through to the blog to view video) This is Aidan at home today: You’ve seen the picture of Super Heroes...
Today was a much better day for Aidan and a much more involved day for myself. When he saw me this morning, he reached his two hands out in his “I’m ready to walk” sign. So good to see him feeling up for that and so discouraging that we’re weeks away from that kind of movement. For breakfast Aidan drank 8oz of water and 4oz of chocolate milkshake. He continued to stay well hydrated all...
Weekends are weird at the hospital. It’s very quiet and nothing really seems to happen. After a decent show of eating yesterday and a little bit of drinking, Aidan has shown no interest today. We spent the day getting him hydrated with IV fluids and bringing his heart rate down. What I’ve learned of his pain so far is that he goes from seemingly comfortable to being very much in pain in a nanosecond, which...
Garreth came down to the hospital yesterday to spend the weekend. Aidan, who has been in a drug induced haze since tuesday and has mostly grimaced at me in pain, mustered the strength for a beautiful smile for Daddy. Whatever. Almost as soon as Garreth arrived, my body shed it’s last bit of energy. My cousin arrived around the same time and offered to stay and feed Aidan while we went out to eat. Aidan...
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