Not many new changes with AJ's arm. He will have another x-ray next week and this news will tell us if his bone is healing etc...

I haven't had another chance to help him with his Farm Town, but hope to soon.

Mike and the girls are getting ready to leave for a family reunion this weekend. I'm excited for them.

AJ & I will hold down the fort here with the help of my nephew Wilson.

Have an amazing day!

I think generally AJ is having a better day then yesterday. Still a lot of vocalizing.

Today we tackled our first try at Farm Town (on Facebook). AJ picked the gift to send and chose the crops to plant. There were 15 gifts to receive and he watched here and there with that. With his choosing certain things I will keep trying this out. Something new and different in AJ's world.

AJ's past 24+ hours have been more spent being more vocal.

We are trying to get him more relaxed and pain free if this is the issue.

Our house has been really busy & lots of different emotions running around so we are not sure what exactly is the problem.

We are only a week or two from another x-ray to see if his bone is calcifying. Time sure flies around here!

Have a great day!!

Well, AJ's tolerating our steady routine of decreasing pain meds. He's feeling pretty good.

He's loving his feet being massaged. (again, thanks Deeda!)

We seem to be "addicted" to Farm Town on Facebook and my newest intent is to see if AJ is interested.

School is out for AJ on Thursday.

Have a great day!

We are continuing to space the time between pain meds and AJ is doing well with this.

Quiet today, just me and AJ at the moment. Relaxed. (Phew!)

AJ had a good day yesterday and a good night last night.

We're moving slow with much of anything with him.

I've had some questions about why they are not casting AJ's arm, this is protocol for where his break is. They don't cast this type of break. AJ's bone doctor also agrees with this.

It can sometimes be hard to sit and wait as we are geared for "let's do something to fix it".

Yet again, AJ is really good at telling us what he needs although he is non-verbal.

AJ is also really good at feeling other peoples emotions. For example if someone comes into the home distraught, he'll start crying. So it's important that we maintain a relaxed atmosphere especially while he is healing. Although our home is pretty relaxed generally.

Today the bricks felt a little heavier.

AJ is doing well with Tylenol and Ibuprofen. Next step is to have longer stretches between meds. Right now he is getting and needing a pain med every three hours alternating the meds.

We tried his vest therapy (chest P.T.) for 1 minute using a variation. We will continue to do this increasing the amount of time as per toleration. AJ's typical day would include one hour of this treatment. So we shall see what AJ can tolerate.

Elisabeth has only one more day left of school. AJ has six more days. His tutor comes here as has been the case these past several years. Katharine was our two weeks ago, so our house is bubbling with summer time energy. The girls and I are going to get cousin Wilson for a visit. I am a very lucky Auntie, this will make the 9th year in a row I've (well, we) have had this set of nephew and nieces come to stay. I love it!!!!

I put up a chinese lantern in AJ's room, his eyes got real BIG, he likes it. He spins it around by way of a modified disco light. Hopefully I can figure out how to put all three of those lanterns up without knocking over the nurses.

Have an amazing day!

perspective

Little by little, like tiny bricks, it is dawning on me how much of an impact AJ's broken arm has on him.

I cannot even describe my feelings on this. I've tried but keep deleting what I've written.

This will be an interesting summer.

For the most part AJ had a good day.

The afternoon was a little rough on him for a few hours (we had to change bedding, too much moving around). He now is resting quietly.

The girls have been having a great time camping at an RV part with Grandma & Grandpa for the past two weeks.

A little sister still has a few school days left, so they take her to school in the morning.

It's good they can have some R&R.

One of the side effects of AJ's pain med is becoming a bit of a problem. His secretions (spit) is drying up. So, his trach secretions are very dry and sticky for suctioning. We are temporarily stopping his vest therapy (chest p.t.) and this isn't helping either.

AJ continues to be comfortable and we are working on extra hydration and other forms of chest p.t. to resolve the current issues.

We are still icing his arm and so far do not have swollen fingers. So that's good.

Thank goodness for air conditioning. It's nice and sunny today.

I had a question about how long it will take AJ to recover. (thanks Peter)

In 3-4 weeks we will have another x-ray to see if the bone is calcified.

So as far as AJ's summer goes, he won't be in his wheelchair anytime soon.

I'm kinda bummed about that, but life keeps rolling on regardless of the plans on my calendar.

I'm still excited for summer to be here, and now I'm going to have to figure out what to do to entertain AJ at home. Suggestions?

AJ continued to have a good night last night. That was a relief!

We are learning new tricks to reposition AJ while keep his arm immobilized. We are using a sling, but there is still a lot of room for movement. With already being bed bound, we also have to keep in mind the possibility of bed sores. So as I said, we are learning new tricks.

At least we have a nurse today so Mike & I can have a bit of a break.

AJ's asleep!!! Comfortably!!!! I knew he'd have to sleep eventually!!!!

Dad's on duty, I'm going to bed too!!!

Again, thanks for all the well wishes.

AJ's arm

AJ's Doctor called as she heard back from the bone Doctor, he recommended doing the things we already are. So no surgery.

AJ has still not slept except for 1 1/2 hours this morning from being up all night.

Pain wise AJ is doing better than last night.

Through his communication device, I am so glad he can tell me to reposition him, or that his arm hurts so I can try something else for comfort.

I even rubbed his feet for a long while at the suggestion of one of my sisters (Thanks Deeda) he liked that until he needed to be repositioned. Now his room is permeating with essential oils. (Thumbs up!!)

Thanks for the prayers and well wishes!

Aj's arm

It's confirmed through x-ray... yes indeed AJ's arm is broken. (not a surprise)

Although AJ's Doctor is checking with bone Doctor, it is unlikely a surgery would be beneficial. AJ would be at very high risk for surgery. So he tends to not be a good candidate.

Stronger pain meds are being called in now.

AJ's Doctor is wonderful and we appreciate her so much!!!!

And of course these things happen on the wee hours of the weekend!!

I'll post anything substantial as it comes up.

Thanks for your thoughts and prayers.

AJ's arm

Well, with fragile, very thin bones this is to be expected.

We believe AJ has a broken arm. (we are still waiting for confirmation on x-rays)

Thursday night during range of motion (or exercises), the nurse noticed his arm went from being stiff to loose and was moving where movement should not be.

AJ was not crying at that time, no swelling. All his vitals were fine.

This continued to be until Sunday early morning, where bruising was now noted and swelling. And he kept himself up with crying all night.

At this time we are working on a better pain control and keeping him as comfortable as we can. His vitals are still good, but he is now in a lot more pain.

Check in for more updates.