How have things been going this last month? I know some of you have been anxious to hear. I said no news is good news and that is pretty much true. We spent the first week or so keeping her pain under control and then weaning her off her many meds.
She got babied a lot. She had so much fun playing Super Mario Brothers with Daddy!
But then we discovered she had a pressure sore. Likely it started in the hospital but we couldn't see it because she was always on her bum. We made it through until our Tuesday post-op appointment to see the "wound specialist" and got Allyvn and Medihoney to apply. After a couple weeks of that it is now gone. It did not make this process easier.
She spent as much time as we could on her tummy until things started to heal.
She got a nice Get Well card from the always thoughtful Aunt Jackie with some very sweet words.
She received some gifts in the mail from Grandma Micki and Grandpa Todd. She carried Doctor Curious George around with her for a week or so afterward. We enjoyed reading the story together. It was a nice diversion when she was feeling her worst.
She had a bit of a freak out about the bandages. I don't think she understood why her legs were purple, even though we explained the surgeons mark the legs for surgery and it was just pen. She then refused to have her legs exposed until these bandages came off.
When they did at her post-op visit she cried bloody murder. But awhile later she gave the thumbs up that the purple was gone.
They replaced the steri-strips and proclaimed things were healing beautifully and she was already showing a lot of progress. After the hamstring lengthening her legs will straighten more and more with time and stretches.
We have a whole exercise routine we do twice a day. 5 exercises, 15 repetitions for each side. Steve's been a great dad and helped by taking one of the exercise shifts. It's a production just to get the braces off. Each has 7 velcro straps. She can remain out of the braces during the exercises for an hour twice a day, a welcome break for her but a lot of work for us. She's become stronger so it's worth it!
We have been taking her to a weekly therapy session at Children's. They make adjustments to the routine as needed. We were there today and the therapist measured the amount of bend in the knees with force applied and without. She (we) have some work to do strengthening the muscles to create balance. When she gets the casts off on Nov. 16th we start intensive PT, 3 days a week, 1 day in the pool, 1 day doing Safe Gait each week. On Halloween she gets the casts replaced with ones she can bear weight in. Until then no weight bearing and her feet can't even rest on the floor for transfers.
This means using a slide board to get from one surface to another.
It means it's nearly impossible to get her into my sister Sarah's car that we're borrowing (remember my car was totaled in the accident). I'm sure my van would have been a ton easier to transport her in. So that is a big fat bummer.
Because of the restrictions we pretty much have to rely on a commode or bedpan for toileting. It's a drag. This is the only time in life where I'm slightly jealous of the kids with special needs who are still in diapers. As you can see a wheelchair would not fit. Sometimes we wheel her into a bathroom, but most of the time it's just right in the bedroom or TV room which is not so pleasant.
She's been sleeping in our bed and Steve has been sleeping in her twin bed in the adjoining room. Initially she was needing meds at night, re-positioning, and was having trouble adjusting to the odd (as you can see) position. She's normally a side sleeper so she had a hard time sleeping at first. Sleeping on her back also isn't good for her Obstructive Sleep Apnea and initially she was having some trouble with her airway, likely from intubation and crying. That has improved, but I'm finding it's not uncommon that I need to replace the seal on her mask in the night. She has also started bolting upright in the middle of the night every 20-60 minutes. It's reminding me of the many years of sleep deprivation when she was trached and I'm older now and kind of cranky about it. Tonight we are going to restart a med that should help her with these shooting nerve sensations/pains. We both could use better sleep.
She has to wear an abduction bar to keep the legs apart, this is for the hip muscle release that they did on her left side (it was tight). That is the reason her leg is up so high in the bed picture.
We have used our creativity to come up with ways to do things, and adapt. That is one of the secrets to how we survive the things we do over these past 10 years. She is unable to bath, so sponge baths suffice. After a scary episode of leaning her back in the commode with plastic bags over her legs to wash her hair I came up with this much safer solution. She is getting some dry skin on her legs around the casts, but it doesn't seem to be bothering her yet.
I had forgotten from our previous experiences with spica casts that having a cast causes an increase in hair growth. Luckily I now know it is temporary and will go away. I'd nearly forgotten.
After the first few weeks we started to get better at transfering and figuring out how to get through our days.
We figured out that the commode makes a better wheelchair than the giant wheelchair and with the padded seat she's now comfortable enough (now that her butt healed) to sit for periods doing things around the house. Like learning to bake rhubarb strawberry pie, the last from our garden this year.
She did some fine motor strengthening picking grapes off the vines which we turned into juice concentrate. Yes that sink is FULL.
We starting using a lap tray for doing schoolwork on the couch.
Last week we started a painting project for fall.
She's been happy to get back to doing some work. And we actually had fun.
We are using exercise time to learn the concept of left and right and simple math like "5 exercises minus 2 exercises, leaves 3 exercises remaining." She's also getting really good at finger counting up to 15. Due to all the repetition she's starting to "get it". And she is counting down the weeks until cast removal. So are we! Okay, we know it's really another 5 but things will get much better with reduced restrictions.
We are CLOSE! This week the steri-strips came off! In true Ainsley style she became hysterical (PTSD maybe?) but then was happy and gave the thumbs up to have the last signs of the surgery incisions gone. Bless my sweet girl.
The incisions. Pray that they don't turn keloid like her others that needed injections. She also has one on her left thigh and I think 4 more on her feet from the calcaneal osteotomies.
I figured out that I need to protect my back, which has been killing me. So we are now using a mattress on the floor when we know I can get her up afterward (like when the big kids get home). You can see her legs are getting pretty darn straight.
Sometimes we even manage to be silly and have some fun.
Or maybe I'm going a little crazy.
In the last month I left the house for doctor appointments and twice for the big kids' things.
Evie needed some makeup for an audition she had. After some anxious waiting I'm pleased to announce she officially got the part and is going to be the ballerina in the Snowflake Lane parade this Christmas season.
All those ballet lessons paid off!
We are so proud and excited for her to have this opportunity!
Evie was away at a drama event so we paid Adrian to help harvest our grapes and prevent them from littering the walkway. You can't make one kid work when the other is playing.
I think he secretly enjoyed it. While I spent the day killing myself doing yard work (perhaps a contributing factor to my back pain). But it was nice to be outside together.
Tuesday Adrian's braces came off! The cake, balloons and water bottle filled with popcorn (an off limit food during braces) were all from his orthodontist's office. I am super relieved that I no longer have to harass him into brushing and flossing and was very relieved his teeth were still in good shape underneath. Hopefully his gums recover quickly.
I took Adrian to get a Homecoming outfit and he's actually happy with it.....A small miracle. Steve taught him how to tie a tie (yes my husband used to wear ties). I'd say he's going to look very dashing and it's nice to see his smile! I'm sure Evie and Adrian will both have a wonderful time at Homecoming this weekend.
Ainsley's birthday is next Wednesday. It's hard to believe she'll be 11. Wow! Just really 11 years of complex medical care and special needs! But we're doing it! These kids are growing up! I'm having a hard time figuring out how to make this birthday special. I've got a week. I've pulled together some amazing last minute things. I'm sure she'll have a great day!
I hope you are all having a wonderful fall! October is my favorite month and fall is my favorite season of the year. XOXO.
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