Since we’ve been home…an update

Well, it has been a little over a week since we got home from the hospital, and truthfully, today, unless you lifted up Aaron’s shirt and looked at his incision, you would have no idea what he went through. His recovery has been truly amazing.

Our first evening home was nerve wracking. He couldn’t stand up or sit down without help, much less move around the house the way he used to, so he needed help with most things. He couldn’t just flit about from toy to activity to toy like a kid usually does. Every time he wanted to do something different he needed help getting to a standing or sitting position. His back hurt after the drive home, and of course our many stairs were a challenge. I had him sitting on a pillow the first day or so, but he was quick to ditch it. I was so exhausted that night that all I wanted to do was put him to bed by 6pm, but resisted that because we so wanted to get him back on a regular schedule.

We noticed that he had developed a bit of a funny walk, pelvis out, shoulders back and elbows bent, and at first it was cute, but I started to wonder (and worry!) that it might be permanent…it was pretty silly looking, but now it’s already mostly gone :) He lost quite a bit of weight during his 4 days of no eating, and as you can tell, he didn’t have a whole lot of weight to spare. It became so obvious to me once we got home and he was wearing regular clothes. His knees and elbows stuck our so bonily, his shins looked so much thinner, and his eyes looked very sunken. It kind of turned my stomach, but that has gotten much better over the week too.

Here is a picture of our first night home. Aaron wanted to work on a new puzzle that my friend Andrea sent from England…and Aaron wanted to do it four times in a row. I guess we need to get him some more puzzles! You can really see his skinniness here.

Another extraordinary thing about our time post-hospital is that the meal calendar arranged by one of our dear friends began. Kathleen Racek found a website where you can set up a calendar where people can sign up to coordinate meal delivery for someone, and she set up a huge calendar that stretched from July 18th-31st, every day of which has been filled by our incredible friends. We are so full of gratitude for the generosity and thoughtfulness people have shown us throughout this time. We don’t live close to anyone, really, and for the most part, the drive down here is pretty inconvenient for all. It’s been so so helpful to have dinners delivered, and wonderful to get to see our friends.

Here is Aaron enjoying our first dinner home, some chicken enchiladas from the Raceks.

After the first night and following day home, Aaron really started showing how much he WANTS to be healed and back to normal. We were fascinated to watch how he adjusted his movement so that he could both do his normal activities and accommodate his own physical comfort level. He asked people to give him a hand or grabbed onto a piece of furniture when he wanted to get up or down. Each day he did more and more on his own without help. He even picked things up from the floor with his feet, since bending over is the last movement skill to return to normal, and he has developed this very equine way of bending his knees one at a time to get down on the floor. There were clearly some activities that still hurt him, but he was only using Tylenol twice a day and now he isn’t using it at all.

He became very frustrated with the limits we placed on him, coming to ahead with having to hold hands with someone as he went up and down our stairs. We have a long steep staircase up to our second floor, but he did NOT like having a person with him. Finally, after he got scolded for sneakily going up by himself, he cried and told me, “You don’t think I’m a big boy anymore. I can do it myself.” It was so sad, and so hard to make him understand. We felt bad for his frustration and tried to give him lots of other chances to move on his own. It has been inspiring to see how he is visibly better and more able every day. After several days the only thing he needed help with was getting down to a laying down position. Today, there is really nothing that seems to hurt him, although a couple of days ago, he ignored my warning and jumped down from a bed, and it hurt him, which kept him temporarily in check.

As his doctor told us, he was going to get better so quickly and want to resume normal activity, and we were going to need to limit him. If he does something that has a jarring impact on his back, it will hurt him, but he can’t do any damage to his spine. If he does something that hurts, he won’t do it anymore, and that’s that. So far that has all been exactly true.

He had an appointment with Dr. Lehman to check his incision and it was looking great, and he will have another appointment on August 10 to check the progress of the fusion of his spine. Hopefully that will all be fine and we will be going in for monitoring x-rays twice a year during his growing years.

At this point, the residuals seem to be a fussier, sassier, and clingier personality, and a pretty huge fear of falling down. A couple of times he has stumbled and let out big scared screams. It makes sense that he is scared of that, and prior to his amazing job in the hospital and recovery since, he has never been particularly daring or resilient. I hope he will continue to gain confidence as his physical activity increases.

As I close up this post, I want to say on behalf of my family how much we appreciate all the different ways people have reached out to us during this time. We have had phone calls, emails, cards, facebook messages, meals, gifts, from family and friends from all corners and just could not feel more supported. This has truly been the most challenging experience of our lives. Although it has gone very well, it has been a very scary year, culminating in a cumulatively huge amount of anxiety and fear. The communication and help we have received from all of you has been like a blanket of support making all of this so much easier to bear. Thanks so much to all of you, from the bottom of our hearts.

We now continue our regularly (well, kind of…) scheduled blog posts.