Constraint-induced movement therapy October 18, 2011
Shortly after Lila’s first birthday we learned she was approved for arm constraint-induced movement therapy. We were thrilled that our insurance company agreed to cover the therapy and I don’t even want to know the cost.
Constraint therapy involves restraining the unaffected arm to promote use of the affected arm. In Lila’s case, her good arm (the left) will be hard cast for six weeks while she undergoes intensive physical therapy for six hours each day. She will have to learn to move, play and feed herself with her right arm/hand. She has quite a bit of use of her right already, but it’s much harder for her to use and 95 percent of the time she opts to use the left.
I know, I know. This all sounds cruel for a baby to endure, but our therapists tell us that children get used to the casting relatively quickly and the results make it all worth it. As a result of engaging in repetitive exercises with the affected limb, the brain grows new neural pathways. This is what we are hoping for with Lila.
We start the program in January. I thought it was best to start after the holidays when Lila’s a bit older and we have less busy schedules. The therapy program will be much like daycare in the sense that we will drop her off and pick her up five days a week. She will take her naps there, eat her meals, everything. When she wakes up in the morning, we are supposed to change her diaper and bring her straight to therapy for her first activities of the day, which will include breakfast and getting dressed. This will be incredibly difficult, because I’ve never been away from Lila so much in one week. I may spend a few hours a day at the clinic with her as long as I’m not a distraction.
I will document her progress right here. As of October 14, one month after her first birthday, her arm is already stronger than it was when she was evaluated for the program. In the video below, Lila plays with a Samsung tablet and shows off her new skills. Even lifting her right arm above her chest is reason to celebrate.
Dr. Wiki-Neuro-Jackhole October 8, 2011
Nothing tops the confusion, anger and fear I felt last June when a doctor “strongly advised” us to terminate our pregnancy with Lila. Seriously, can you imagine a world without LILA?!
Three days after Lila’s MRI, another doctor insulted my sensibilities and my role as a mother TO THE CORE! I finally got the call from the neurologists’s office regarding the questions I had for the doctor about Lila’s scans. Once again, the doctor himself was not the person on the other end of the phone line. Instead, it was a woman in the clinic’s call center who I don’t believe is a nurse and probably has no medical background. She just makes calls, takes notes — the go-between the doctor and the patient. To the best of my knowledge, this is the conversation we had:
LADY: I talked to Dr. [Wiki-Neuro-Jackhole] and he said that, yes, what Lila has — the periventricular leukomalacia — is what is causing her motor difficulties. (I’m thinking, “NO SHIT!? I’ve known this FOREVER!)
ME: (Stunned) Ok. I’m aware of this, but I want to know exactly which parts of her ventricles have the injury.
LADY: Dr. [A-hole] suggested you look up PVL on Wikipedia to get a broad understanding of PVL and if you have further questions, he’d be happy to see you in his office.
ME: (Steam coming out of my ears) Fine. When can I get in to see him?
LADY: His next available is in two weeks.
That a doctor told me to Wikipedia my doctor’s diagnosis and couldn’t speak to me directly about the results of her MRI is BEYOND me. I simply do not understand and never will. What the doctor doesn’t know is that I have looked at the Wikipedia site and every other godforsaken website about PVL and CP. I wanted basic information about a specific question about my daughter’s brain. To me, it seemed pretty cut and dry. The lady on the phone giving me the neuro’s message was nice as could be and I didn’t want to waste any more of her time so I made the appointment for the simple fact of getting a chance to tell this doctor where to go and what to take with him. It seemed that in having a person translate information and questions about a topic she was unfamiliar with, the information between myself and the doctor was lost in translation.
Fast forward two weeks. I’ve had time to cool down. Lila’s wonderful pediatrician, Dr. Thomas Stealey, called the radiology department on my behalf and spoke to the radiologist directly about Lila’s scans. The damage to her ventricles is moderate. There’s damage on both sides so they call it bilateral. It’s worse on the left side of her brain, which causes the weakness to the right side of her body. Dr. Stealey took the time to make those calls and fill me in. Thank God for him.
The day of the neurology appointment arrived and I smiled as the neuro came into the room and proceeded to talk to me as if I had NO CLUE what Lila’s diagnosis was. He drew a picture of the brain just as Dr. Hoekstra did for me the day we found out about the PVL when Lila was just a week old. I listened and let him go through his spiel.
As the appointment wrapped up I told the doctor there was something I wanted to talk to him about. “Why couldn’t I get you on the phone following Lila’s MRI?”
Doc squirmed in his chair. “Ah. I don’t know. I guess I don’t recall what happened.”
I told him exactly what happened, the calls made, the questions asked and his heinous response. “Besides having to wait two weeks to get the report on my daughter’s MRI, you had someone tell me to look up her diagnosis on WIKIPEDIA. It was insulting, insensitive and unprofessional,” I told him while remaining very calm and matter-of-fact.
“I’m sorry you feel that way,” he said. “We have hundreds of phone calls coming in every day and I wouldn’t be able to see patients if I took those calls. I guess I wasn’t aware you felt so compelled to speak directly to me and for that, I apologize. We usually have a very seamless system, but every once in awhile something like this happens. I get one complaint a year, so I guess this is that complaint?”
The jerk went on to say he couldn’t have discussed the MRI in the full detail that we did in today’s appointment, with which I replied: “I wasn’t asking for a half-hour of your time on the phone. I wanted a few minutes to get a very basic question answered and I was very happy to wait until our February appointment to talk about the rest.” Not to sound like a know-it-all, but I already knew everything he told me in the appointment anyway, because he treated me as if I were a parent learning of a diagnosis for the first time. To be fair, he did apologize and told me to call with any other questions and let the nurse know he said to call me.
I won’t be doing that. I will find another neurologist who is equally qualified and more gentle with his bedside manner. They’re a dime a dozen in this town and we have too long of a road ahead of us to not be comfortable with our doctors.
Ok, jumping off my soapbox now. Here’s a picture of Lila’s brain. The two white areas on the left and right are her ventricles. Although it’s hard to see, the ventricles are surrounded by areas of “brightness.” This is the dead brain tissue, a result of a lack of oxygen to her brain.
MRI, but no answers October 6, 2011
The week following her birthday, Lila had a MRI of her brain and neck. The main reason for the test was to rule out any problems in the neck that could be causing Lila’s head tilt. The neurologist also thought it would be good to have an MRI in her file — I guess to have something to compare with if she should ever need another one. I had major reservations about doing the test. In the month before the scheduled MRI, Lila’s head tilt all of a sudden went away one day. When she was tired it would reappear at times and there were three days where it was pretty bad, but other than that, her head control is under control. I didn’t want to put Lila through sedation just to have the images in her file. I needed to be convinced, so I called the neuro’s office several days before the MRI. An office staffer — not the doctor — called back to say he thinks we should go forward with it, because the head tilt could come back and we want to make sure everything is anatomically correct in the neck. In my heart, I knew her neck was fine.
We checked into Children’s Hospital at 7:30 a.m. The parking ramp, the walk through the skyway, past the gift shop, the smell of the hand sanitizer was all too familiar. We checked in at security and they even printed my badge using the picture they’d taken of me the day after Lila was born. Eh, not pretty! The worst part for Lila was getting an IV in her hand. I held her while she cried and two nurses poked her with the needle and wrapped it up so she couldn’t pull at it. We were with Lila right up until the started the procedure and then we had to leave. It was awful. Ten seconds after they administered the anesthesia medication, her tiny body went limp in my arms and she fell asleep. I kissed her and laid her on the table — that massive MRI machine.
An hour later, Lila was already waking up, but still a little groggy. She did great and although I was so sad for her, I enjoyed the extra cuddle time as she slowly woke up. We were taken to recovery where I rocked her in the same style of chair I did when she was in the NICU. The beeps of the same monitors and the hustle and bustle of the nurses was a bit paralyzing for me. “Can we go yet? Yes, she is drinking milk, she’s fine, can we go?” And within 20 minutes, we were back home and back on schedule. For Lila it was like nothing ever happened and she went right back to her cute happy self.
Meanwhile, I got on the phone with the neurologist’s office to find out results. “Overall, good news. Normal neck and spine and no changes to the brain from the previous ultrasounds.” But I had a few more basic questions and the woman on the phone didn’t have the answers. She’d check with the neuro and get back to me, but it would have to wait until Monday. Annoyed, but fine, I can wait until Monday and spend the weekend thinking about it.
Next time I’ll tell you about the second most insulting and offensive thing I’ve ever been told to do by a doctor … and what I did about it.
Busy bugs October 3, 2011
I’m still here!!! I know, I know. A lack of new posts doesn’t encourage any of you to return to this page, but I hope you will keep coming back every so often to check up on Lila. Oddly enough, this is one of the only places I feel comfortable being “almost” entirely honest about EVERYTHING and I just haven’t felt like telling the truth lately. I was really struggling for awhile coming to grips with the shit storm we’ve been living in the past 15 months and the realities of the road ahead. But, I’m here.
For those of you who are still with me, thank you for hanging out. I’m making a point to get back to this blogging thing. Going forward, I will always make an effort to shine a light on the good stuff in our lives — there’s a lot of it — but I will never gloss over the difficulties we face on a day-to-day basis and pretend that things are easy.
So … there’s a lot to share and I won’t dump it all in one post. The biggest, happiest, brightest and BEST thing that’s happened since we last visited is our Lila Bug turning ONE! The days leading up to her big day were some of the hardest I’ve had. I cried. And cried. And cried. It was insane. On an average day I feel many different emotions as Lila’s mommy. I grieve the loss of her “normal” childhood — both for her and for Tyler and I — and I worry about the future. I’m angry that this is the hand we were dealt and I’m afraid we’re not doing enough for her. I’m starry-eyed when I look at her happy face and all I can see is that giant grin. I’m hopeful that she will do just fine and will end up living a life as fulfilling as yours or mine. I’m proud of how far she’s come and how hard she has to work every day to get where she wants to go. And I’m simply honored that someone somewhere chose me as the woman to help her along the way. The days before her birthday all of those emotions were swirling around x100.
But the day finally arrived and it was incredible. We went to Children’s Hospital for a visit with Lila’s NICU nurses, whom we haven’t seen since she was discharged last November. Lila had a physical therapy assessment, which she blew us away at. Then we all had dinner together and Lila had a piece of carrot cake. It was low-key and perfect.
All the while, of course, I had a big party in the works. So many people showed up to show their love for Lila and in many ways, this was our thank-you to them for supporting us through the past year-plus. We had family from West Virginia and Missouri show up to surprise us and it nearly knocked my socks off! (THANK YOU! I will NEVER forget that!)
Here are a few pictures and videos.