I did, in fact, find my camera cable. So, I want to share some photos from the wheelchair fitting process. Video will be tomorrow’s project!
This is what Abbie’s wheelchair looked like without the seat attached. The foam wedge is there to give her an “open hip angle”. In other words, the only way Abbie can really sit at 90 degrees of hip flexion is to collapse into her abdomen and roll onto her sacrum. Not good. So, instead of fighting this, the goal of this chair and seating system is to meet her where she is at — putting her into a comfortable, stable position, while supporting her optimally.
This is a front view of the seating system. Notice how different each side of the back support look, yet this shape puts Abbie into a good midline position. This seat was produced after a mold was taken of her body from the upper back through the mid-thigh. Although it is custom-molded, there was still much work to do to get it to fit Abbie perfectly. Because it is, in essence, an orthotic, the fit had to be perfect, otherwise we risked Abbie developing skin injuries.
Lynette, Abbie’s PT, took pictures of her skin before and after each seating trial. We would put Abbie in the chair for 30 minutes or so to see how she would react. Also in this picture is Abbie’s nurse, Auntie Alicia. Abbie spent a lot of time on this massage table over the course of the fitting, but never complained.
After the first seating trial, we determined that the seat needed to be trimmed just a bit. It is constructed of little balls that, together, feel somewhat like a stiffer version of memory foam. The materials allow air to circulate through the seat, which will be fantastic for Abbies skin.
This photo records my biggest sacrifice in the process. In order to carve out the places in the seat causing hot spots on Abbie’s skin, we had to correlate the positions on the seat exactly to the red spots on Abbie. The best way to do this was to mark the skin spots, with my favorite lipstick, and then put Abbie back in the chair, allowing the lipstick to transfer to the areas on the chair that needed trimming. It was a very efficient process, and after carving out the discolored areas on the seat, Abbie’s skin looked much better in the following seating trial. Aloha, Viva Glam…I still miss you!
The seat without the bottom cushion. It was most likely being worked on post-lipstick test. It seemed to me that even the hardware (metal seat pan and metal seat back) were custom-molded for Abbie’s unique shape. Getting this seating system was absolutely worth the wait, the fight, the faith…it is going to change how she interacts with everyone and everything, and keep her healthy in the process
The seat back being tweaked a bit, to account for hot spots on Abbie’s ribs. Felt more like Monster Garage, with the blow torch and all manner of power tools. You can see the seat back is composed of materials similar to the seat bottom, along with some extra padding. This seat will allow for some adjustment as Abbie grows. We are hoping it will last for 3 years.
This view captures well the amount of technology on this chair. Abbie will drive the chair forward with the sensor located just behind her head. Left and right turns will be initiated with the sensors on either side of her head. This head array can also be used to operate a dynamic (tablet-computer like) voice-output communication device. She also uses these sensors to tilt her chair, raise her leg rests, and elevate the chair. She will also have the ability, eventually, of using them to control a computer mouse. As involved as it may look, to me it is very simply a key to the world for Abbie.
Abbie’s old friend, Tucker, stopped by on the third day of the fitting. He was a welcome respite from the boredom for Abbie. She is laying behind him on the mat table, with Genevieve.
Abbie, waiting patiently, right after Tucker’s visit. She was such a trooper through these long days. She sure doesn’t look, in this picture, like she would be in the PICU two days later, does she? We were all taken by such surprise when she got so ill so quickly. I am thankful that as I write this, I have the girl in the picture back.
The first ride home. Eydie, Abbie’s OT is casting a careful eye over her as we load this new chair for the first time. I was VERY much a novice driver, so it wasn’t so easy to figure out how to best get in the chair into the van the first time. I must say I have improved since this day. We were thrilled to see Abbie looking straight forward, instead of at the boring old roof of the car.
The fitting process with the chair continues yet. Abbie’s illness immediately after the chair was delivered delayed the follow-on appointments. We are finding the most challenging issue to be the headrest (the story of our life with wheelchairs in general). Until we can get it to a perfect, stable position, Abbie will not be able to access the driving features of the chair. We are hoping to have this completed in the next couple of weeks.
In the meantime, however, she is absolutely loving her new chair, anyway. The positioning is so incredible that she really doesn’t want to come out when it is time to move. When she is in this chair, you just see her, not the chair, not a stoller, not 14 positioning pillows. Just beautiful, amazing her. We are so grateful.
The Chest Vest has helped Abbie’s recovery immensely. Here are some photos of our new, powerful ally:
This is the actual machine. It is very easy to program and run. Of course, when we got it, it was institutional beige. Inside the instructional packet, however, was information about Skin-Its made just for the Chest Vest. Well, if I could make the thing pink and have one of Abbie’s favorite verses on it….how could I resist?
Abbie getting a Chest Vest treatment. The machine forces air through the tubes, at pressure and frequencies that we set, for 14 minutes. She absolutely loves this…I think it feels like a massage to her. We do this three times a day, after which we put her prone on the massage table to help drain the secretions loosened by the treatment. We love you Hill-Rom!!
Abbie getting her nebulizer treatments. Morning and evening she gets Albuterol (to open things up), followed by Pulmozyme (secretion thinner), then the Vest, followed by Pulmicort (like Albuterol, but long-acting). I was surprised when told how long it would probably take her to get over the pneumonia in September. But, Dr. Harrington was right. It has just been this week that she is really, really better.
Kyle, Abbie and I — the day Kyle left for college. Very bittersweet for me, as these two were exceptionally close before Abbie’s injury. I grieve for what they’ve missed out on together these last years, and I wonder how their relationship will go and grow from here. But, I trust that hearts that love each other like this pair do, will always find a way back together.
Kyle, at his new home. But, still bringing the Aloha Spirit with the shaka…love that. I am so happy he is at SPU, and look forward to watching his life unfold and his spirit be refined in the coming years.
At Gasworks Park, the evening I left him at college. Love this boy madly!!
In early October I went to my 20th year reunion at Santa Clara. Seeing Chase was a wonderful bonus! Here we are with Donna and Laura, my college roommates, who babysat Chase from the time he was a newborn until he was six months old. A lot has changed since then!
So…we are all caught up – – photowise, at least. Much more to say, but Abbie’s horse, Lizzy, awaits. Off to Da Ranch we go!