Homeschooling with Grace

 We added lidocaine patch in two strips on her back parallel to her nicely healing wound. She's been cleared to be immersed so we can do aqua therapy if a slot opens up. Her sleep has been great the last two nights with tweaking of meds. I've got access to the stander here at rehab so she's standing daily outside of her PT session. But the big news today is that we got to try the Locomat! Locomat is an automated treadmill with robot-assisted lower extremity controls. In other words, she gets strapped in tightly with very carefully calibrated measurements and settings and the robotic arms move her legs in a normal gait pattern while the treadmill runs. It can be set with different amounts of assistance. Today, on her first try ever she did 20 minutes and the machine was only providing 65% of the effort! It was amazing to see my 17 year old daughter walking with a normal gait! I'm excited to see where we go with this! We also casted her right wrist to stretch it out. We...

 1) Her very contracted right arm and hand have relaxed dramatically since SDR. We can fit her back in braces that have been too uncomfortable and she is tolerating stretches. She's even making some limited hand and finger motions. 2) She has no clonus. 3) Her leg tone only kicks in when she's super excited so her legs are mostly staying in place on the wheelchair footplates. 

 Daily Gracie is gaining strength. She wants to pull to sit. She's recovering balance in sitting and she has started sit to standing. She holds a stand for about 3-8 seconds now and is actively participating in stand pivot transfers. She is so excited for therapies. She receives 3 hours a day of therapies: speech, occupational therapy, and physical therapy. She's been a bit insecure and wants a parent with her constantly. Not sleeping great. But her pain is well controlled for the most part on valium (for muscle spasms), Tylenol, and Motrin.  The kids got to visit one by one! More and more comfortable sitting in her chair for longer stretches. A bike ride! Still passive leg movements, no attempts to really push much through her legs, but she enjoys it and doesn't resist it. 

 We received insurance approval and were transferred by ambulance to Spaulding for inpatient rehab. It was a great relief to get out of the hospital and into another setting! I was relieved that we were transferred in ambulance so that she didn't have to sit up for a long time through Boston traffic at rush hour. We've been in Spaulding before so it has an air of familiarity which is refreshing. 

 Gracie's recovery is progressing in leaps and bounds. Today she did several transfers in and out of her wheelchair and I took her out of her room in her wheelchair twice for >45 minutes. Her pain is well controlled. She has very limited active movement in her legs. Significant jelly legs! I'm doing a sort of stand pivot transfers but she's really not doing much to help with the standing part of that transfer. She was a GMFCS level 4 (scale of function) so her muscles have not had much chance to develop behind all that tone. Yes, it makes me nervous but she is also already so much more comfortable (excluding the post-surgical pain) that it looks like we're already achieving one of our goals (1. Pain reduction, 2. Medication reduction, 3. Improvement in walking and standing).  She's transitioned over to PO/G-tube meds so she really could be ready for transfer tomorrow to rehab if the bed were available. I'm anxious to start more intensive PT! Here we are soaki...

 Today is Saturday and much less busy in general in the hospital. Gracie has done great with the epidural out. Valium and gabapentin in addition to acetaminophen and ibuprofen are very well managing her pain. She has been tired today - perhaps she overdid it yesterday? PT helped get her out of bed into her wheelchair which she was excited about for a few minutes and then she was done. I later got her out of bed to the bedside commode for a few minutes. She's definitely not loving trying to stand and she has very little muscle effort going on in her legs. PT felt that she was contributing some effort but I'm not as sure. We knew she would have very little muscle under that tone but it's still a bit scary. We're praying that she can build these muscles over the next couple months and be a strong stander and walker in the future. She looks great sitting and her contracted right arm is looking fabulous and relaxed!  She had an EEG done for 24 hours but she's so medicate...

 We were nervous to have the epidural turned off but Gracie sailed through the day with minimal pain meds and the epidural and Foley catheter were removed. Two less lines to worry about! She got up to sit on the side of the bed with two physical therapists and absolutely loved it. She didn't want to be done when it was time to rest! She continues to be on valium for muscle spasm, Tylenol, and now oxycodone has been added on since the epidural is off. 

 Busy day for our brave patient! We are loving the epidural for pain control. She's been very comfortable overall. With physical therapy, occupational therapy, and a few extra helpers, we got our girl prone (tummy time) with a little wedge to help keep her right arm from getting trapped due to the arm contractures. She giggled and "chatted" for quite a while during her 2 hour tummy time until she dozed off from the exertion of position changing.  Her right arm, which is incredibly tight and has contractures, is definitely much looser today. It's an effect we were hoping for, secondary to the decreased tone in her legs. I'm not getting my hopes up after just one day, but I'm really hoping that decreasing the tone in her legs will help her right arm enough to avoid surgery.  She has minimal movement in her legs which we assume will pick up as the epidural is weaned and she gets moving more.  Her bed rest ends at 48 hours after surgery which would be around 10pm ...

 The nitty gritty for folks who are interested in the details: We have left the ICU, epidural and urinary catheter in place. She's getting valium, toradol, and gabapentin today for pain management, along with acetaminophen. She's flat on her back or rolled on her side, horizontal at all times for the next 48 hours. She's on antibiotics while the epidural is in place. She keeps dozing off but is playing in slow motion when she's awake. She hasn't eaten yet more than a little applesauce (it's now been about 48 hours) but she's not very hungry yet (and not very active bowel sounds yet) and she's well hydrated on IV fluids. We should get her feeding started again today (both G-tube and oral if she's up for it).  On the neurology floor now, PT and OT came by and we are starting a protocol that looks like the following while she's confined to laying on her back: - knee immobilizers and adductor wedge 2 hours on, 2 hours off - AFOs when knee immobilizer...

Gracie's surgery took over 6 hours yesterday, making for a very late night! Her neurosurgeon said that it went well but that her nerve signals are very confused. The brain damage that caused the cerebral palsy when she was a baby has resulted in all kinds of mixed up signals going to her legs, which explains so much of her movement challenges. Needless to say, it took quite meticulous and patient work for the surgeon to trace the nerves and figure out which ones had the most dysfunctional signals to the correct muscle group. Her surgeon is not sure how much capability she has for building significant muscle strength with such dysfunctional nerves.  She's very comfortable, resting in the ICU with an epidural for pain control. She has woken up and "chatted" happily but still groggy a few times. She has moved her legs a bit (which I'm happy to see) and her legs are soft with no clonus!

 Video of Gracie in her gait trainer before the SDR. 

 

 I’m pausing the “homeschooling Gracie” blog to share about our Selective Dorsal Rhizotomy journey. I wish she could have gotten this done when she was younger but here she is, 17 years old, getting it done. SDR is a procedure where the neurosurgeon carefully isolates nerves in the spinal cord that are firing too much and causing spasticity. He then cuts a certain percentage of the nerve so that the signals reaching that particular muscle are much less. This means that her legs will be much more relaxed and hopefully have a chance to build muscle instead of being overwhelmed by abnormal tone and spasticity.  Our goals are: 1) less pain. 2) less meds and need for Botox injections (her liver recently took a temporary hit from her meds so we definitely want to minimize meds).  3) improved posture and walking. She’s not expected to have massive results because she’s so old and does not walk unassisted but this girl is super determined so I’m excited to see what happens! ...