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!

End of Constraint...

Annabelle ended up doing so well with the cast on that we left it on for a week and a half. Our limiting factor was not wanting to send her to daycare without a functioning arm/ hand and my ability to take time off from work. We saw huge improvements in her ability to supinate her arm and once we got the cast off her spontaneous use of lefty helping righty has been much improved. Generally you see some back-sliding of skills once the constraint is over (just hopefully not enough to put you back where you started so that you are at least a little bit more ahead). As far as her arm goes we have continued (now 2mos later) to see her spontaneously use lefty more on its own and to help righty, improved supination and reaching out to grab. Her motor planning also continued to improve throughout the week... in the video she got REALLY fast at grabbing objects and handing them over, even across midline. I don't think this is still as good as it had been with the cast on but overall it has remained improved.

Her walking and going upstairs (so basically lefty leg) took a hit. I think it was a combination of focusing on her arm and a growth spurt.  Her gait is pretty terrible and she struggled to walk up the stairs again for a while after the cast was off (we were allowing her to crawl up with the cast on).  Her leg did not respond as well as her arm, or as well as it has in the past, with this round of botox. Bummer.  We are 2 mos out from our next round of injections and the poor kid is already getting mad at stretching her hamstring. She has also lost a few degrees off her popliteal angle (at the knee) according to the rehab doc at follow up. Despite that we are totally planning on doing the constraint casting for her again.  Rehab and OT actually suggested that we do it with our next botox round in June but given work we are planning on doing it with every other, so we are shooting for October at this point.


A hit to lefty leg still doesn't slow
this girl down!

We also have our regular eye follow up coming in another month which I am happy for because her left eye is hardly focusing at all. I told the ophthalmologist it was getting worse last time but he liked the way she looked in the office so we didn't do anything. Now it's not just when she's tired but frequently throughout the day, she focuses on you with her right eye while the left one is just sliiiightly off and kinda glazed over.  With her birthday coming up we also have our regular meeting with her pedi. I'll be interested to see how she feels about Annabelle's verbal skills, I think her vocabulary is great but her pronunciation and grammar are a bit behind, maybe ~6mos is all.  And of course with an upcoming birthday comes visitors and planning for a celebration! No real party this year but Annabelle has informed me that she would like Minnie and Mickey cupcakes that are strawberry just like her daddy's were... Does this girl know what she wants or what?

Still such a typical toddler

 

 



Restraint Week, Day 2-4

Annabelle kept doing GREAT throughout the week! As we went on we did a few more structured activities to allow lefty to get a lot of active use. Mealtimes still seemed to be the best and most intensive "therapy" but there was still no fighting, which was really nice, meals just took forever!

We did a bit more baking, because Annabelle loves to cook (eat) and it takes so much grasping and rotating her arm it was one of the best activities we found. We played the Elefun game multiple times and she improved throughout the week in her accuracy and speed in picking up the butterflies and with holding onto her net.  Too bad she still didn't actually want to catch any of the butterflies. We also played the "Frog Game" where you pick up lilly pads, rotate them to see the animal on the other side and match 2 together. Then once you have a match you get to stomp on the "button" to make the frog fly into the air (Oh hey left leg therapy, we didn't forget about you this week!).  This game was a lot more difficult and she needed a lot of help as she had to isolate her thumb to get it under the lilly pad to pick it up and then rotate her wrist but it was still helpful.

We of course painted with lefty because Annabelle absolutely loves to get paint everywhere, the projects didn't last nearly as long as normal but lefty did get to get a bit goopy and I have a lovely lefty painting sitting on my desk now. We also did a lot of play-doh with lefty. Lucky for us Aunt Kris had sent some new play-doh toys for Valentine's day so that kept us very entertained. We have a few rollers and blocks with shapes to push into the play-doh which was good for lefty to open/roll, grab and push. Part of our new set let us make play-doh turtles which Annabelle really liked but when she wanted something new made out of the play-doh lefty had to grab the turtle and "smush" it so lefty also got a lot of squeezing/ strengthening practice.


It is also starting to get nicer out around here, finally. So we took her new bike from Xmas out for a spin. I couldn't get her off the thing! It was difficult to learn the steering concept since she couldn't even hold on with righty, she was concentrating very hard on grasping with lefty aaaaand I was kind of mean about the peddling and made her legs do a lot of  the work, which is still very difficult for her (again, hey lefty leg I totally didn't leave you out!). She got so worn out the first time we took it out she put her head down on the handle bars and told me "night night".  We took the bike out a few times and each time her lefty grabbing and steering skills improved and her peddling strength got a little bit better!

Looking pretty exhausted after an hour of bike riding

There are a few more things that we did throughout the week, I will post about those later. I have some good videos and really don't want to over do it in a single post!

Restraint week, day 1

There really was not much going on for the past few months.... Really busy with visitors and the holidays. Our therapists wanted to give Annabelle a break so we weren't really going there or working specifically with lefty for awhile.

Well bring on the new year and another round of Botox! This time we decided to cast righty arm afterwards to force Annabelle to use lefty. No planned intensive therapy but I took some time off of work (no way was she going to day care without a functioning hand) and did some activities at home that promoted some serious lefty work...

Day 1 and she was already doing well. The cast didn't bother her at all, she thought it was funny and kept telling righty "not today righty, it's a lefty day!" The first day we kept things pretty simple and mostly focused on getting lefty to help during meals. Our pronation/supination was a huge area to work on so eating was good practice. We also made pink cookies for valentines day, she had to grasp the measuring cups and then pour them into the bowl, which worked out great. She didn't think of it much as work as there was chocolate chip cookie dough and cookies when we were all done!


Struggling a bit at first, but much improved just a few bites later!

I LOVE this picture, the rotation of her wrist looks so "normal"!


We also played some games that specifically made her reach out and grab things. She loves the Elefun game, not that she tries to catch the butterflies with her net but she holds the net, laughs at the butterflies flying and then will pick them up in order to do it again... It's a riveting game for mommy and daddy ;-)

We are already seeing progress from lefty arm and she's still in a good mood with regard to the cast. It is really exciting to see. More activities and progress to follow!

Night and Day

That's botox for Annabelle, like night and day before and after.  She had the procedure done about 3 weeks ago now and you could totally tell a difference just a few days after the procedure. She always responds very well in the arm, less in the leg but it is still very well.

Here's a video of our first OT session after botox, she is willingly using lefty arm so much more than we had ever seen before and was much more accurate!

 

Her leg was casted after botox as well, just for 1 week. Thankfully, that's the only casting she needed to stretch her muscles out rather than doing serial castin. Her PT was really pleased with her range of motion once we took the cast off so I would say that the amount of botox to each area of the leg was good too. Nightly stretches have become less of a fight and more plesant as well :-)

While we were getting the botox done the rehab docs mentioned wanting to do some phenol so that they would have more botox to use in other places. One being her pectoral muscles (chest) to help her left arm reach out easier, I had never thought of that one. In any case we declined the phenol b/c it was mentioned the day of and I was not able to read about it beforehand. From what I do know it is much more painful afterwards and I don't think Jim and I were mentally prepared for that, plus we left 2 days later for Vegas and left Annabelle with his mom. We didn't want Annabelle to be extra cranky for her while we were away!

Another thing that was mentioned by both the rehab docs and PT was a Selective Dorsal Rhizotomy (SDR). Her PT, who I trust very much, is encouraged by how strong Annabelle is "underneath" the spasticity. It sounds pretty intense to me, it is essentially going into the kiddo's spinal cord and cutting some of the sensory nerves coming off the spinal cord. The patient then needs to lay flat on their back for 2 days and is followed by 10-14 days of intensive inpatient rehab. Most people struggle to walk at first and there is a large amount of weakness since it is the first time the spastic muscles are no longer taking control of everything.... Like I said, pretty intense. From what I read there are definate benefits, everything from improved lower extremity use as well as upper extremity use to improved cognition (presumably due to not needing to concentrate quite as much on the lower extremity muscles) and less ortho procedures. 

There is no way Annabelle would tolerate that at this point, only being 2.5yrs old and barely tolerating an hour of therapy here and there let alone 2 sessions a day. I think part of the reason it's being brought up so much is "THE guy" we would want to do the procedure is retiring in the next year or so.  We have a bit of discussing and researching to do...

 

 

 



PISSED

I am so mad at our hospital/ rehab dept right now!

So, in my last post I mentioned how Annabelle was starting to get really tight for stretches and her gait is starting to suffer, BUT botox was just a few weeks away and she responds really well to it (delayed to 5mos interval b/c of our regular rehab doc moving out of state).

Well fast forward to a week before botox and we hear from our therapist that a few of the rehab providers left suddenly so we should call and confirm our botox appt (said therapist is a few towns away from where all this is going down so she is just hearing things from other families).  So I call and sure enough the secretary is all like, "yeah we only have 1 provider doing botox now so we will have to reschedule you for NOVEMBER" (now >7mos delayed from our last session). I then ask her, "well this is now less than a week away from our original appt, was anyone going to call me?" and they are all, "yeah, at some point but we hadn't figured out how to handle this yet."

 Oh geeze thanks for figuring out your shit first (not really) while we are going along with time off of work and school and special therapy appt's set up for casting afterwards... great f*%king customer service!  And as it turns out through the grapevine other families were NOT called. They showed up at the hospital and there was no doc there to do the injections!

In any case, we got Annabelle into a private clinic (We *think* is in-network for our insurance) and got a new botox appt moved up to early Oct with them. It's about a month sooner than what the hospital could do and I'll take it. Even with putting Elmo on the Ipod Annabelle has been SCREAMING and crying during stretches for the past few weeks, saying it hurts and she has never done that before. Jim and I can absolutely tell she keeps getting tighter and tighter as well. It absolutely breaks my heart!

As a result of all of this, there is going to be one hell of a letter sent to the clinic manager about how incredibly poorly the whole situation was handled.  I'm also miffed that the providers we are now going to in the private clinic are the ones who suddenly up and left the hospital, leaving the families in a bit of a tizzy. It does kind of kill me to given them business but at this point it matters more that Annabelle gets the damn injections....

On a much happier and less frustrating note, this is GB petting the piggy (and then telling her
which way to go) at the local heritage park. So stinkin' cute!