2 months out

Well I win mom of the year (sarcasm)... after my last post we met with our rehab doc and talked about the sleep. She had said it was still really early to be off meds and was totally surprised we had taken Annabelle off the Baclofen. Even though Annabelle was doing so well during the day and moving around a lot she was probably still having that squirmy, muscle, can't get comfy feeling when it was finally time to lay down and settle. So we went back onto Baclofen. Rehab suggested 10mg at bedtime but we only ever needed 5mg. We kept that on for another few weeks and then had her totally off about a week ago, so about 1.5mos out from surgery and we are off all meds!

Annabelle's strength is amazing too, so is how she is moving through therapy. Actual sessions are another story... she's still her stubborn and difficult self when we go in which is very frustrating. Despite that, both her PT's think she has met or surpassed many of the goals we had for her and that she is already a little bit past her previous baseline. In the past ~2 weeks she has started to go up the stairs alternating legs without holding onto anything, makes me nervous but it's awesome! She is strengthening her calf muscle and doing some excellent focused dorsiflexion (toes to the nose) which we started to incorporate into stretches. This has carried over into her walk where she is getting her toes up more when she brings lefty leg forward in her gait and is dragging the toe on the ground much less. Her jumping evenly with both legs is great- up, forward and working on jumping off a small step. Her squat jumps are better than mine too!

Squat jumps!

At this point we are planning on working on plantarflexion (toes down/ tippy toes) which she has hardly ever done. I can remember a few times she would go on her tippy toes to get stuff out of her reach pre-surgery but have not noticed any of that since. Right now if we try to have her move her toes down to touch my finger she can't do it and will just straighten her entire leg out. The more we strengthen that dorsi and plantar flexion the less we should see her ankle inverting and collapsing in and we should see her gait just keep improving. We are also going to be working on general balance, yesterday we had her stand with lefty up on a step and she is just so used to using and focusing on her right side that she struggles to not fall over.

Even with working on all this stuff she is progressing so well PT thinks that after March we can drop down to one PT session per week and continue regular work from home which is just 3mos out from surgery!

Unfortunately, OT has remained pretty stable. We have not seen a big increase in lefty hand use after the surgery but I'm hopeful once PT simmers a bit we will see jump in function. She is slowly but surely increasing lefty use as an assist and is getting better at isolating fingers. Our main focus right now is fine motor, mostly pincer grasp with her "pinchies" which is also slowly but surely improving. We also went back to more "activities of daily living" kind of stuff like dressing and buttons to start getting ready for kindergarten....

 
 

Improving finger isolation and teaching Lefty
how to sign "I Love You"

 

HOLY SHIT! KINDERGARTEN?!?!?! Man that was fast, we still have a year :-) but that is a whole 'nother ball of wax with what school to go to, IEP/504, what will or won't she qualify for.... She has not been in our Early learning program/ SpEd preschool since we are doing so many private therapies so we will be starting from scratch. I have a hard time thinking about it but we will be starting our research in the next few months. One step at a time, right?


Finally, we have eye surgery today. It's pretty sad when with all she has had done the eye surgery has been a blip on our radar and we even forgot about it for a little while. Just the other day Jim and I were trying to figure out which therapy we had today and were so confused when there was nothing on our therapy print out.... "ooooh yeeeeah, surgery".  Not looking forward to dealing with post-sedation Annabelle again but at least there are post-sedation pancakes involved!

1.5 months post-SDR, doing well with peddling on her own and quad strength

Just need to work on that steering!

 

 

 

3 weeks out

We are now 3 weeks out from Annabelle's SDR. She is still moving amazingly well but oh sleep! Sweet sleep why do you evade us!!! I think there has been ONE night since we have been home that she slept through the entire night. She is going to bed at her regular time, staying awake playing in bed until 9 or 10 and then waking up a minimum of two times before getting up for the day around 630a.  Sometimes she's not actually awake (night terror?) but just fussing. Other times she will be tossing and turning and get all wrapped in her blankies. Sometimes she wakes up and just asks to be held. If you ask her if she hurts she says no so it's hard to tell if she is having back spasms or if her hamstring is bugging her (that's still tight). We have her totally off baclofen to get a new baseline but that may be coming back.  We have rehab follow up tomorrow and that is my first question for them!

Home therapy is going well, she likes incorporating her squats and "criss cross applesauce" into her regular play. Outpatient rehab is a whole nother ball of wax. She likes to lay on the floor and refuse to do things for our PTs, OT has been oooook. She's known Annabelle since 4mos old so doesn't take any of her crap. At this point we are working a lot on dorsiflexion (toes toward the nose) since she has more foot drop now where she will drag her toe when she walks. We are also working on her getting up from sitting with lefty leg out front (kind of like a lunge position) she is NOT thrilled with that one... Let the bribery with movie time commence!

Also check out those pinchies! OT thinks she is still where she was right before surgery as far as lefty hand use, I think there's more spontaneous use, but then again I'm mom and I'm biased.

Here's to more and more improvements and strength and cooperation and less fits! Oh to be the parent of a "threenager"

SDR Day #5 & 6

Annabelle has continued to be AMAZING! Well, minus the tired melt down fits with OT (not PT though, weird). 

POD #5 was our first full day of rehab service and therapy. The first OT session was a bust, we had no idea what time they were coming. They showed up 5min into a movie we had just started so she was pissed and wailed her way down the hall to the therapy room. We ended up just bringing a game back to her room where she later, very reluctantly, started to play. PT about a half hour after that went amazingly well. We are pretty sure that Annabelle developed an immediate crush on her new PT (rehab service did tell us that all the little girls like this guy, it was funny). Annabelle went on the swing and used her trunk control to get it moving, she stood up on the swing and did high knees. Then she got a shopping cart out and went all around the therapy room "shopping" for bean bag animals. She even made it up the stairs to get a few at the top! The PT had to stabilize her at the hips a bit but otherwise she was kind of off.

Our afternoon sessions went a bit better. The first part of OT there were meltdowns but then she got to go on the swing again so she chilled out. She was able to crawl all through an obstacle course and played catch with me with a giant ball, with both hands.  afternoon PT we did a lot of the same activities- walking around with the cart, stairs, squats. But this time the therapist hardly had to hold on to her, she got up the stairs on her own and even did an excellent squat to pick the toys up with just a bit of help.  Then we let go of the cart and she walked across the room without holding onto anything! She still had the cast on her left leg so she was a bit unstable but she did it! Finally, she got to get onto one of the bikes and peddled her way all around our loop of the hospital, she loved it.  The therapist told me that he could tell a notable difference and improvement already, just between the 2 sessions!

 

Yesterday, POD #6, I had to go to work so Jim was in the hospital. Therapy went a bit better than the day before with less fits. She continued to do well in both OT and PT, even did a "bear crawl" all on her own, which we've been trying to do for forever in regular OT. In PT she got to do all the same things as the day before and continued to be increasingly stable on her feet and rode the bike super fast!

Today is POD #7, just 1 week out from surgery day! Overnight last night we hit a bit of a bump. Annabelle did not sleep well and Jim was worried it was a pain issue, but then she woke up and threw up all over her bed. Jim was super worried something was wrong with regards to the meds or surgery.... but then he started doing it too :-P grooooooss. So this morning we had to rush grandma out to sit with Annabelle while daddy went home to bed. OT this morning was more meltdowns but PT was good. This afternoon I got back to the hospital and she has done very well. All of OT went well- she walked all around with her shopping cart and was using both lefty and righty to take Velcro fruits apart. She was even doing different movements with lefty and righty!!!  Whenever she tries to do something with lefty, righty will mimic that movement like they are "linked". We've been trying to "unlink" them for a long time.  She seems to be feeling much better than her daddy this afternoon and has eaten breakfast and lunch without any issues. I think she and I are going to have a good PT session and a good evening tonight!

 

Oh and the absolute BEST update..... The rehab team had their weekly pow-wow yesterday and decided she is doing so well that we can go home FRIDAY!!!! Almost a week earlier than we had initially anticipated!

 

SDR day #4

Yesterday was post-op day #4, it was Sunday so a "day off", not that we have done a ton of therapy or anything yet. In any case it consisted of a lot of playing up in the play room, reading and movies.  She's moving amazingly well on her own when she's doing her free play. She loves the play room so I am using it as incentive to throw no fits in therapy today. 

 

 

I'm a bit concerned about today- we transfer to the rehab service and start our intensive therapy portion of our hospital stay. 3hrs total of PT/OT throughout the day. Does not really sound like a lot but when you're 3 years old and your attitude is highly dependent on how tired you are and there needs to be food and a nap in there too our day is going to be pretty full.  Last night I tried to avoid valium for bedtime and someone was wide awake!!! At 11p I broke down and got her some, she was out within 20min.  That is why I'm concerned about therapy today. Tired Annabelle is a disaster when trying to do therapy- saying "no" a lot, total meltdowns and just laying on the floor. 

Since I know better, we have talked about earning playroom time and movie time for the evening by doing good listening and no fits. I am going to try with every fiber of my being while we are here to get her on regular schedule, she does so much better when she knows what is coming and has her routine (who doesn't).




Excellent crawling

OT goal from the other day- up on high knees
all on her own!

Pain has continued to be under control. We lost our IV the other day so we have been on all orals for the past 2 days- Ibuprofen, Tylenol, oxycodone and valium. Like I said, we've been trying to avoid the narcotics and the IBU seems to cover her discomfort better anyway. She sometimes will say her back is owie and she needs medicine but 2 seconds later she will be bouncing around in her bed so it is hard to tell just how "owie" she is.

Right now we are just waiting for our first big OT session, here goes nothin'!

Singing "Part of Your World"
while doing her Dinglehopper

SDR day #2 & 3

After my last post, neurosurgery came by and Annabelle was allowed to sit up with the head of the bed at about 30deg for a 30min block (24 hours after surgery).  This was awesome for her and she couldn't wait! We sat up and played her Minnie Bingo game. She was pretty good with laying back down flat again after that (with the bribery of more princess movies).

 

 

 

 

She also got a lefty leg cast later in the day in order to stretch out the muscles that had been tight for so long. The application of the cast seemed a bit painful to her but she calmed right down once they were done and left her leg alone. Since then she has tolerated the cast very well.

 

 

Post op day #2 (yesterday) they turned the fentanyl in her epidural catheter off and started her on some IV toradol (Super ibuprofen) and some oxycodone for breakthrough pain.  She of course did fabulous- sat up in bed on her own (like straight up)....

 

 

 

So the epidural catheter got to come out then the urinary catheter came out! Soon after that PT came by to meet Annabelle and help me get her up and out of bed.  Annabelle adored being able to get into a wheelchair and go for rides.  We checked out the therapy room, went to watch the fishies, went to see the play room and then got a special treat of ice cream because she was doing so well! She started to get pretty tired and complaining of a headache so then we went to lay down for a bit (more movies).

 

 

 

 

Daddy came up for dinner last night and we had family movie night. Annabelle then had another rough overnight but seemed ok this morning. We got her up and out to the therapy room today for her first mini-PT and OT sessions.

 

SHE IS AMAZING!

 

PT had a goal of her sitting up at 90deg and torso control and crawling over the next few days- she did both of those then decided to stand up (with help) and take a few steps while holding on to one of us. She surprised all of us (and did it in front of Dr. Mike our rehab doc while we are here).  OT took some warming up to but then she started to have some fun and was reaching up above hear head and going from sitting on a bench to standing pretty well (with some support help).

 

 

 

 

 

Starting Monday we will be transferred to the Rehab service and Annabelle will start 4 45min therapy sessions (2PT/ 2OT), hahahahahahahaha- our regular PT warned them about her but I don't think they know what they are in for, I am hoping Annabelle just gets used to our daily rehab schedule and after a day or so chills out and participates. Right now I forsee the first few days as a lot of meltdown pain in the ass sessions, but she may surprise me (I hope)

Visiting with one of our favorite babies and playing peek-a-boo!

SDR Day #1

So no blog updates for a looooong time because there has not been much going on- botox, stretching and therapy. Not too much progress with therapy. Baclofen and botox injections, while helpful for stretching, were wearing off quick and not as effective as they had been in the past. So we made the decision to move forward with a selective dorsal rhizotomy.

PT and rehab had been talking it up for awhile, we wanted it done well before kindergarten so that rehab was done by the time she was off to school on her own. Also, the neurosurgeon who does them here is rumored to be retiring soon and we wanted him. The St. Louis Children's hospital website has great information on SDR for parents wondering if it's right for their kid.

http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr

Pre Surgery:
So, the past few weeks have been kind of crazy- met the neurosurgeon who said GB was a great candidate (tried to coordinate surgery with eye muscle surgery that she needs as well but it couldn't be done), had an MRI on her head to monitor the hydrocephalus (totally stable and under no pressure, YaY!), met with rehab doc to discuss surgery, met with PT/OT to talk about pot op rehab, MRI of the lower back to visualize her spinal cord and then finally surgery yesterday....

We talked a lot about the surgery with GB beforehand. She knew she was having surgery on her back and that there would be an "owie" on her back and left leg after surgery but that we would give her medicine to help. We talked about her wearing a diaper again for a few days to go potty and laying in bed and watching a lot of movies.  We also wanted her to be prepped for how lefty leg would be different so we talked about needing to hold on to a "toy" to walk again after surgery and lefty leg needing to re-learn how to walk. We basically tried to prep a 3 year old about as much as you can before something like this.

Surgery Day:
Surgery day went about as smooth as it possibly could.  Our OR time was early so the whole not eating thing beforehand was easy this time. Her biggest thing pre-op was when I had to wipe her down before putting the hospital jammies on, we thought they were regular wipes but whatever the cleaning solution was burned her and turned her skin red so she was NOT pleased. After that she was ok. The child life lady came to meet GB and since Daddy and I could only walk with GB to the doors and not all the way to the OR she offered to hold GB while she held the mask to her face to go to sleep.

Leaving her at the door was the hardest part for me, GB was cool- she had the Ipad on with Cinderella and was giving the anesthesiologist and child life lady play by play commentary as they walked the hall to the OR. When they called to let us know GB was asleep and they were getting started they said she talked about Cinderella the whole way up until she was out and that she did great.

In the OR, as far as attending docs, were Dr. Walker our neurosurg and Dr. Gooch our rehab doc. The rehab doc is there to do electrical stimulation of the nerves then decided which nerves to have the surgeon cut. Surgery took about 3.5hrs for everything. They only cut on the left side and cut about 47% of the sensory nerves.

Post Op Day #0 & 1
Because they did nerve cutting we were anticipating a lot of left leg nerve pains (pins and needles) as well as a lot of back pain and muscle spasms. She was left with an epidural catheter, which goes into the spinal column, and has fentanyl running in it with the ability for Jim or I to given an extra dose if needed. She also has valium available for muscle spasms.  Thankfully we have only needed 3 extra doses of fentanyl so far and have only used valium for spasms twice now (just over 24hrs post op).  She also came out with a urinary catheter that will stay in place as long as the epidural catheter is in (the meds can cause urinary retention so the urinary cath keeps her from not being able to pee) and a big old bandaid on her back.  She also has an IV in her right foot. 

She woke up like a bear from surgery but she is always like that with sedation. Once that wore off she was cranky but like I said, pain has seemed pretty well controlled.

The evening after surgery it seemed like the nerve pain in her left leg was going to be bad, she would freak out if you touched her leg at all, but as we went along she actually wanted me to massage her leg and this morning even let the rehab doc do some light touching of her leg while she was distracted,  this is EXCELLENT as it seems her nerve pain is not going to be as bad as we initially thought it would be. As I was rubbing her leg I was able to move her ankle joint around (I have not messed with her hamstring muscle or her hip at all) and her range of motion is notably different, it is so much easier to get her ankle past neutral already! It is very encouraging to see and is a bit exciting for what is to come in the future!

Overnight, Jim stayed in the room with her and he let me go up and sleep in the family room. I am forever grateful for that since after my week of call last week it was actually the best sleep I've had in about 2 weeks.  After I got up I was able to go to the gym (the social worker got me a free pass for while we are here and it is right across the street) which was much needed after surgery and was sooooo helpful with my stress.  Jim didn't have such a great night unfortunately. GB woke up around 130a, after not sleeping all day and was just awake, thankfully not in pain! She stayed up until about 730a when she fell back to sleep then was up again about 9a.  Needless to say she has been VERY cranky this morning. She seems ok when it is just me and Jim around and doing things that need to be done but gets very mad and even mean when the nurse, tech or docs come in.

Jim is at work today and then home for overnight, so he will get a much needed and deserved night of sound sleep. Today is a mommy daughter day and luckily, with the help of an extra fentanyl dose and some valium, she is now napping! I'm very hopeful that after this bit of rest she will be more like herself again with the staff here. 

Will update more as things come up!
V

p.s her favorite part of this whole hospital thing is the ordering of whatever food she wants, she has basically been eating non-stop since sedation wore off!