How to Give a Wheelchair Hug

Mom and I have been talking for awhile about writing this post. It involves a very important part of being human and that is giving and receiving hugs. I LOVE hugs! But I know that hugging me can be a bit awkward, for a number of reasons:
1. I sit in a hard metal wheelchair- not exactly comfy.
2. I have a hard time hugging back because my arms tend to be either straight out or bent close to my body. 
3. I can't ask for, or initiate a hug with words.

Often people rub my head, kiss my cheek or touch my hand- which are also great- but none of those has the benefits of a hug- there just isn't anything quite like it. We did some research about the benefits of hugging and this is what we found in this article at Healthline.com:

1. Scientists say that giving another person support through touch can reduce the stress of the person being comforted. It can even reduce the stress of the person doing the comforting.
2. Researchers found that hugging may reduce the chance a person will get sick. The participants with a greater support system were less likely to get sick.
3. Hugs make you happier because of the chemical oxytocin which is released when you hug.
4. Hugging can reduce fears, stress and pain.
5. The most interesting thing we found out about hugs was how many hugs we need in a day:
A family therapist said, “We need 4 hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth.” 

That's a lot of hugs! I know that my brother and sister probably get a lot more hugs than I do- not because they are cared about more, but because they ask for them. They are able to initiate a hug with mom, dad or anyone else. I know my family loves me, but I'm not sure I'm getting 12 hugs a day to promote growth. Most people pat me on the head or arm, ruffle my hair, or give me a kiss on the head. As much as I love this, it's not the same as a real hug. 

In all my years, I have never met someone who knew how to give a wheelchair hug as well as my cousin Clara. I only met her when I was about 10 and she was about 6. She had no problem getting in there and fully embracing all the metal that surrounds me. She put her head on my shoulder and snuggled right in. That made me feel so good. She continues to hug me that way every time I see her! Which, unfortunately isn't very often because she lives all the way in Alaska. We talked to Clara about her wheelchair hugging techniques and this is what she had to say:

Aunt Steph: Clara, how did you know how to give a wheelchair hug?

Clara: My cousin Kai has a wheelchair.

Aunt Steph: Is there a hard part about hugging someone in a wheelchair?

Clara: Probably making sure you don't hug too hard.

Aunt Steph: Can you tell us the steps to giving a great wheelchair hug?

Clara: Bend down so you are as big as them and then give them a hug.

Take if from Clara- it's that easy- just bend down and give them a hug!

 
I propose we live like Trolls and have designated HUG TIME. When the alarm goes off, we all get a hug- wouldn't that be great! No more awkward moments, just an expectation that hugs are coming! 

Here are some tips for giving me a hug:
- If I don't know you well, ask if you can have a hug. I can smile and also make sounds to indicate I do want a hug. If you are not sure, you can ask my mom or dad- they often have an idea how I am feeling. 
- You might have to bend down a bit or even go on one knee to give me a hug.
- Help me hug you back by getting my arms up on your shoulders. If they are bent, you might not be able to do that, but you could just put your arms around me.
- Help me lean forward to put your arms around my back, or hug the whole chair!
- Hold the hug for longer than you think. Researchers say at 20 seconds is when the oxytocin is released- but that can feel like an awful long time (especially when there is cold metal involved). So, do what feels comfortable, but at least 3 seconds is a good rule of thumb. 

So, next time I see ya- I'll be waiting for a hug! 

(PS: If your child doesn't want to give me a hug- please don't make them. I'm good with a high 5 or fist bump. I really only want hugs from people who want to hug me:-)

What exactly is an osteotomy anyway?

So, now that I've had my much anticipated hip surgery, Mom says we can actually talk about what they did. She said she couldn't talk about it before or look at pictures because it was, "too much." Luckily, Dad was able to read the 25 page booklet the hospital gave us called, A Guidebook for Hip Surgery in Children with Cerebral Palsy. These are the things I had done on Tuesday during my 8.5 hour surgery:

This is what my hips will kind of look like on an xray.

- Femoral Osteotomy- my femur bone was not sitting in the hip correctly so it needed to be positioned correctly in the socket and then attached with screws and a plate. Eventually they will probably take out the hardware in maybe 6 mo-1yr.
- Pelvic Osteotomy- this part of the surgery helps make a better cup in the pelvis to hold the ball of the femur.
- Tendon lengthening (achilles, foot, adductors)- the lengthening will help so my muscles won't be so tight trying to hold my hip in the wrong place. I also had a lengthening of muscles on my right heel and outside of my right foot.
- Foot reconstruction (right foot)- Over time my foot has become a little deformed because of the tight muscles and high tone I have all over my body. I am super strong, have you read about Tonus (my alter ego)? Needless to say, the pump that keeps Tonus at bay was not a silver bullet and Tonus is still alive and well, but a little more subdued. Anyhow, back to my foot- it had a huge protrusion on the inside of the foot from over pronation, so they needed to put some screws in to keep it from getting worse. 

I am hanging out at Boston Children's Hospital recovering from my surgery on the 10th floor. We have a pretty cool view of the other buildings close by, but we have to share a room. Luckily, our great nurse and Dad worked for us to get the window spot after our first night in the spot by the door (loud, bright, and annoying). 

 

This is what my legs look like

I have to have this wedge between them for 6 weeks. I also have soft braces on my legs to keep them straight and a cast on my right foot to keep the tendons from tightening up.









 

I also have lots of medication because they did lots of work on my joints. I have an epidural in to take care of some of the pain and lots of other things that make me pretty sleepy. The first night was pretty awful, Mom and I didn't sleep at all. The second night was better. Here is what my medication pump set up looks like- lots of hoses and stuff.

At BCH they have some cool programs, like Reiki treatments. I was really surprised when my own doctor came to my room to do the treatment today! This is Dr. Davidson, she's pretty awesome. She teaches yoga at the family center also.  They also have therapy dogs which I am hoping will come to say hello one of day.

There is a fun room on my floor to make crafts and see the other kids, but I haven't been out of my room yet. Hopefully I can get there by the end of the week. If it wasn't so cold we could go outside on the roof to the garden- it's pretty cool.

Tomorrow Dad, Addy and Liam will come to see me. Hopefully I'll be more awake and in less pain by then!

Mom Hijack: Zen Parable in Real Life

A little over a year ago some of you may have read this "rant." If you didn't read it, in a nutshell, MassHealth denied a claim for a piece of equipment for Kai and in order to appeal I had to be at a hearing on a day I could not attend. There is no way to reschedule these hearings. I didn't post an update about the series events that occurred after that rant, and felt that it deserved some time and attention, since the eventual outcome was what we wanted.

After writing the "rant" I decided to let the appeal go. I was going to find another way to pay for Kai's gait trainer. But then an unexpected gift came along in the form of a winter snow storm on the day of the appeal. I got an automated call that morning stating that all hearings were cancelled because of the weather and I would be notified of a new hearing date. Wow. How. Lucky. 

When the new date came I made time in my schedule to attend the hearing and spent a lot of time preparing for the meeting. I went through their denial and qualifications for approval of the gait trainer. I went into the meeting with a framed picture of Kai which I put on the desk next to me (a little dramatic, but I was pulling out all I could), as well as a number of video clips and photos of Kai in his old gait trainer. I was fortunate enough to get some great advice from my personal sage about going into the meeting with a different paradigm than I had been living with. I was sure they were going to say no, deny it again and that anyone who had this job was awful and miserable. Just a few words about the martyr vs trickster paradigm and my viewpoint turned upside down. I went into the appeal with a completely different attitude. Now I was thinking, "How do I give them what they want so I get what I want?" In the end, the deciding piece of information was a 15 second video clip of Kai using the gait trainer without support from someone else. They saw what they needed and reversed the denial immediately. This situation reminds me of the old Chinese parable about good coming from something you initially think is going to turn out bad. 

In the case of our other request to MassHealth for a communication device- it was denied for a third time. We decided not to appeal because I did not think I could give them what they needed to change their minds. We are working through this communication piece and hope next school year will be more fruitful in this area.

The reason I chose to follow up on this situation now is because Kai is getting ready to have major surgery in two short days. The gait trainer has been important in preparing him to enter the surgery strong. He has been using it almost every day with varied success, but just last Friday he walked over 100 steps in one trial, which is more then he has ever walked! You can see a video of the last few steps here.

This Tuesday Kai will be in surgery for 10-11 hours having a femoral osteotomy.  Kai's hips are at risk of dislocating and this surgery will prevent that from happening and also create more stable joints for him. He is also having a procedure on his right foot to keep it from pronating and leading to deformation. He will be in the hospital for 5-7 days and home for about 6 weeks. If anyone wants to send him video or voice messages, he would LOVE to hear from you!

Kai's been trying to get in as much fun as possible before his surgery. Some highlights...

Cousin Sleepover at Mema's

CC Museum of Natural History

Bowling with Liam

Virtual Reality- Whoa!

Sledding with Cousin Emmett

I'm on Dad's team!