Ben Update

***I know these posts about Ben are long...I apologize.  There are just a lot of details I know I will forget quickly and I want to try to remember exactly what happened***

The day to go see Dr Huntley finally arrived.

Where Dr Stotts saw us in Layton, Dr Huntley's appointment was at Primary Children's.

 

We got new xrays and then waited to see the doctor.

He said everything still looked good.  He checked his scar and his range of motion and then said he would see us in three weeks.

A little surprised at the brevity of the visit, I asked if he could start walking yet.  "Oh no.  When we see you in three weeks we'll decide at that point".  He must have sensed my shock because he went on to explain that usually, at 6 weeks (we were at 7.5 at this point) he lets patients start carefully weight bearing but since Ben wouldn't really know how to do that he was just going to keep him off of it entirely.

I was seriously so surprised!  Dr Huntley knew of Ben's mental abilities and had originally told us 6-8 weeks.  I was under the impression this visit was just a formality before he was going to be given the go ahead to start walking.  I really didn't expect to hear he would need to continue non weight bearing.  Andy was very surprised too.  What a disappointment :(

To soothe my sadness we stopped by Trader Joe's and Target on the way home.

I told Andy that if Ben had not been handling the situation so well and was fighting staying off his feet, and we were told what we were, I would have broken down in front of the Doctor right then and there.  But, he was doing incredibly well and we had the whole wheelchair routine down pat so I guess we could handle 3 more weeks.

I let the school know that he would be in his wheelchair a while longer and asked if we could work out a way for him to go full days in the wheelchair the following week.  The teacher said she would check with the District nurse.

When I hadn't heard back the beginning of the next week I texted the teacher back, she said she still hadn't heard from the nurse and she would let me know.  Well, I was a little impatient...I contacted the nurse since I know her on a personal level as well and apologized if I was contacting her out of turn.  She responded that she didn't know she was being waited on and she would look into it.  She got back to me a little later and said there were a couple of things they needed to do first and they still needed to hear back from the bus if they could transport Ben's wheelchair.  At this point I was quite frustrated with the lack of communication.  I let her know that I had already been told by two different people that he was fine to go on the bus.  She apologized and said that was just what she had been told.

I then texted the teacher and suggested she talk to the other teacher about the bus since she had told me the week before that the bus could take him.

She got back to me soon after and said it was a green light but they still wanted to move an easy chair from one of the administrator's offices into their room so Ben would have a place to take a break from his wheelchair.

So, it was another day or so before they were ready to take him full time but it finally happened.

Josh knelt down next to Ben for prayer one evening and Ben gave him lots of loves...

One week into our "3 more weeks" Ben had another seizure.  It had been almost 5 weeks since his last one.  This time however, he didn't seem to have any pain afterward so we were hopeful nothing had moved.  His Vit D levels had come back on the very lowest end of normal but not severely low.  They went ahead and put him on a supplement though and it appeared to have helped at this point thank goodness.

At the end of the three weeks I drove Ben down to PCH (Andy had his own fish to fry that day :)

First we stopped at Trader Joe's.  It was selfish of me but there were some things I was wanting.  Ben was an angel and I filled a basket full to overflowing as I pushed him around.  People were very kind and helpful and it was a positive experience.

We made great time, and arrived early to the appointment.

More xrays and a very similar, quick visit with the doctor.  He did mention that down the road, we could think about removing the screws so they wouldn't have the chance to cause any more problems.  He said the removal was usually less of an ordeal than putting them in.  That was encouraging :)

And then I asked if he could start walking.  He smiled and said yes.

Nice!

It had been 10 full weeks to the day of his surgery and we were so ready!

We drove home excited with the news!

I carried him into the laundry room from the car and gently put him on his feet.  With me still supporting at least half of his weight, he almost immediately started moving his feet forward.  He was a bit awkward, and needing much help still but he went all the way into the living room and instantly climbed up on the couch where he had been perched the last 10 weeks.  Seeing him walk (even with a lot of support) for the first time in two and a half months, I was admittedly emotional as I helped him in.  I was excited for our lives to go back to normal :)

He sat in the same spot for hours and didn't try once to get up.  I had put the living room back to rights by dismantling his nest so he was free to move if he desired.

After 4 or 5 hours I needed to go outside and water some flowers so Matt came and sat with Ben.  Matt knew he had been given the green light to walk but since he hadn't tried to move on his own I didn't even think to warn Matt that he would need support when he did.

When I came in about 30 minutes later Matt said Ben was getting off the couch!  When I got there, he had stumbled and Matt had caught him before he hit the ground.  Ben was crying and panicked though.  I sat him up and when he calmed down I pulled him up under his arms to see if he would bear weight again.  He would not :(

These pictures show how he was so splotchy and not doing well after the incident.

I put him back on the couch and he sat for another several hours until bed time.  At that point I tried to see if he would stand again.  It turned into a lot of tears and fear.  Enough that I was convinced he was in pain (seemed to be coming from his feet, not his legs or hips)

I felt like I had learned my lesson from his broken hip and we just needed to take him into the ER right then.  I have never been confident in my decisions on whether or not to treat things like an emergency or not with Ben, but again, after the hip incident I felt like we shouldn't risk it.

For the second time that day I drove Ben to a hospital for xrays.

Andy followed behind in his car so that he could leave if things became too drawn out.

We arrived about 11:30 p.m., and to make a long story short, had xrays on both feet at 12:30, after which, Andy drove home and Ben and I waited another hour to hear the results.  There were no problems visible but the Dr did say that small fractures are often hard to see on xrays so if he continued to seem in pain to bring him back in.

By the way, once we arrived at the ER, Ben was only happy and social, saying hi to everyone and showing them his shirt, shoes and animals.

I'm sure everyone wondered why we were there with this seemingly fine and happy child.

When we got home at 2 a.m. I tried to mimic what we had done earlier and have him walk to his room from the laundry room.  He absolutely would not put his feet down to even try :(

I have been in touch with his surgeon and at first he thought he needed to see him if he wasn't bearing weight a couple of days later but then when I contacted him after a couple of days he said he would see him in a couple of weeks if things didn't improve.  I think telling him he didn't seem to be in pain any more made a difference.

As of this writing, we are a day shy of two weeks since he got the go ahead to walk.  He has improved...very slowly but he will usually walk from the living room to his bedroom with a lot of support and encouragement.  A few days ago he got up on his own and walked a couple of steps but that has been a singular occurrence at this point.  He does have a limp but I don't know if that is something I should be worried about or not.

I guess we'll see how the next couple of weeks go.