Tuesday, January 31, 2012

23-hour EEG

We got home from the hospital a couple of hours ago after a very long day. In short, there were some major technical difficulties that may limit what information we are able to get out of the EEG. Also, Allie had about 5 suspected seizures this morning and we are not sure if the EEG was working properly enough to capture them. Jonathan and I are both upset about the technology and staff failures and terrified about what her continued seizures mean for her.

The long version of this story starts with Tom (Jonathan's dad) and me checking Allie into the hospital at 10am yesterday. We got a nice private room and Allie got hooked up. She hated getting the EEG sensors put on her head, just like she has hated it the two times before, and she cried pretty hard during it. They wrapped her head and all the wires in gauze to keep her from pulling anything loose. Tom and I did our best to keep Allie entertained until Jonathan showed up after work, around 5pm. I took Tom home later in the night and went back to the hospital to spend the night with Jonathan and Allie.

Allie fell asleep around her usual 7:30pm and around 11pm we shut off all the lights and went to sleep. Nurses and technicians came in every couple hours throughout the night to check on Allie, make sure that all of her vital signs were OK, and check for problems with the EEG.

When Jonathan got up around 7am, he walked by the EEG machine and noticed an error notification. The EEG had crashed. Just then, Allie started waking up. We notified the nurses but it took them about a half hour to get the EEG re-running.

During this time, Allie had about 5 suspected seizures. Only the last two of these have any chance of being captured on the EEG.

Somebody came to talk to us a little later and apologize for the machine breaking. She scolded us for turning off the lights when we went to bed. She said that the EEG data that was recorded overnight may not tell us much because the accompanying video is not visible since we had turned off the lights. Why hadn't any of the people who had been coming in and out of our room said or done anything? Nobody ever said anything to us about turning off the lights. To be clear, there were still peripheral lights on in the room but apparently not enough for the video.

The main reasons that we wanted the overnight EEG were to see if she was having any issues while she was asleep and to see if they could capture the spasm behavior when she was first waking up. We now don't know if either of this information will be available. We are upset, to say the least. Allie went through a lot to get this and I hope that we are able to get some useful information out of it.

The neurologist is going to check in with us after she has had a chance to look over the EEG data. I will update more then.

Saturday, January 28, 2012

Seizure-Free and Talking

We have officially called it. Allie's first word is... CAT!

She has said "mama" and "dada" indiscriminately for months. When we ask her "Where is Mama?" she usually looks at me. The same for "Where is Dada?" But, she also calls the light Mama and the bathtub and bananas. Dada gets the lucky privilege of sharing his name with her pants and her diapers. My point is, she may know who Mama and Dada are but she doesn't do a very good job of discriminately saying them.

Cat, on the other hand, is a very different story. The cats come around and she shouts"Kkkkk.... dat!" Good enough for us.

Today also marks day #3 of no seizures. She has been on the medication regiment for Infantile Spasms since Monday and they seem to be working. Fingers crossed that things stay this way.

Allie's Gama (Bonnie), came to visit Allie this past Sunday-Wednesday. Her Papa (Tom) is coming in today. Allie is getting lots of love and support and we greatly appreciate it!

Tuesday, January 24, 2012

New Meds

The seizures continue.

Allie has been put on a high-dose steroid treatment (Prednisone) in addition to a higher dose of her anti-seizure medication (Topamax) in hopes of stopping the seizures now. She is also taking a prescription form of Zantac (an intense antacid) to try to help her sensitive little stomach handle all of the medication. She hates taking all of the pills but is in otherwise very good spirits.

The fear is that these little seizures could be a condition called Infantile Spasms (IS). IS has an awful prognoses if the seizures cannot be controlled, including severe mental retardation. The neurologist says that there are many reasons to think that Allie does not have IS, but it is not something you want to mess around with.

Some of the good signs that this is not IS include:
  • A late onset of the seizures. IS usually starts in infants between 4-8 months. Allie was 11 months old (2 weeks ago) when we first saw a seizure.
  • Allie is high-functioning. Her current cognitive development tests right on target for her age. Cognitive delays or declines are usually present with IS.
  • IS brain behavior is not showing up on EEG. While monitoring the brain waves are not conclusive, the wave pattern that is typically present with IS was not seen in Allie. The unaffected side of her brain had normal-looking wave patterns. The side of her brain that was damaged by the stroke had some spikes, which isn't a good thing, but it is not the same kinds of spikes usually seen with IS.
  • She is happy. Most IS babies are agitated but Allie is as happy and chipper as can be.
In spite of all of these good signs, the reality is that her seizures look very similar to IS. All we can do now is tackle them as aggressively as possible and hope that we can control them before too much damage is done.

Assuming that the current steroid and anti-seizure cocktail work, Allie will have weekly check ups with her pediatrician to make sure the medications aren't having any noticeable adverse side effects. She will be going in for a 1-hour EEG tomorrow as a quick check up and will be going in for a 23-hour EEG next Monday. We meet with her neurologist and psychiatrist (a physical rehabilitation doctor) after the long EEG.

If the seizures are not gone by next Monday, she will be admitted into the hospital for 3-5 days for more potent steroid injections.

If either of the current or potential steroid treatments work, she will continue with them for 6 weeks.

Allie is also meeting with a cardiologist next Wednesday to get a full workup to see if her heart is in good shape. She had a routine EKG a while back and everything seemed fine but they want to double check.

Lastly, she has another sedated MRI scheduled for Valentine's Day.

The neurologist warned that if the MRI shows an increase in scar tissue around the part of the brain that the stroke damaged, she wants us to meet with a neurosurgeon to talk about the option of surgically removing the damaged portion. I am so not ready to think about brain surgery on my baby. Let's hope that the seizure medication and steroids do their job!

I cannot believe how much our poor little girl has had to go through before her first birthday. She is so strong and we love her so much.

The silver lining (and some perspective) here:
  • Thank goodness that we have good insurance. If we end up going with the intense steroids, it will cost about $150,000 just for the medication (not including the up to 5 days in the hospital). Every couple of weeks, we get a notification from our insurance company detailing how many thousands of dollars that they have paid on our behalf.
  • We are so lucky to have access to the most amazing doctors. I was talking with some other parents in the waiting room at our last visit to the Children's Hospital and they had moved to the U.S. so that their children could see the specialists at the hospital.
  • With the exception of her right arm and now her seizures, Allie is a totally normal kid. She may not be able to crawl and move around as much as she (and we) would like her to but she will get the hang of it eventually. She loves all the normal things, is way happier than many of the other babies we know, is a great eater and self-feeder, doesn't have any allergies, is very socially aware, and is just the cutest darn baby that I have ever seen. Sure, she has her challenges but who doesn't?
Whenever something new and crappy happens, I try to think of all that is going right. Allie will beat the seizures and she will learn to use her arm in a way that works for her. She doesn't have to be perfect in every way because she, as a person, is perfect. Allie is strong and independent and she has a family that loves her and will do anything for her.

One of her therapists sent out an email a while back that warmed my heart. It was addressed to "Team Allie", which in that context included her physical therapist, her occupation therapist, and her speech/cognitive teacher. How many babies have their own team? Hillary Clinton said that "it takes a village", and in Allie's case, she has at least a village worth of people who are rooting for her and helping her on her way. Thank you.

Thursday, January 19, 2012

Allie and Daddy on Tummy Time

Allie had a checkup with her neurologist this afternoon and her anti-seizure medication dosage got increased. We want to make all the seizures stop ASAP.

Sometime in the next week or so, we will be doing an overnight EEG. We need another MRI soon too.

She didn't have any seizures today. Let's keep that up!

It's Called a Therapy Vacation

A little rest and relaxation is good for everyone, especially an overworked baby.

Allie has worked her way up to her full dose of Topamax, an anti-seizure medication, and we are hopeful that this will be able to control her seizures. Some days she doesn't have any and other days she has many. We are meeting with her neurologist this afternoon to talk about how everything is going and see if there is anything that we can do differently.

Until she has been seizure-free for at least a week, she is taking some time off from constraint therapy. She will still be doing physical therapy, but not having to be driven to and from Baltimore 3 days a week frees up a good deal of her time. This morning, she and I piled a mound of pillows in her room, curled up on top of them with a blanket and some of her favorite books. She diligently turned the pages as I read the books to her and we got some time to just lounge around and chat.

Granted, our conversation consisted of mostly "baba ga naaaa mamama MA!" "What do you want for lunch today?" "taDADADADA ta ta maaa." "Are you excited to go to the doctor?" "[raspberry] [laugh] [raspberrry]." Still, we had gotten so caught up in getting her to and from places and making sure everything got done that I had forgotten to take some time to just enjoy her.

A therapy vacation is good for all of us.

Monday, January 16, 2012

Righty is so Useful!

Check out Allie using Righty in conjunction with Lefty, and then instead of Lefty. Her constraint therapist said that the skills that Allie demonstrates without the splint is what they term "real skills", or things that we can count on her retaining after the therapy is over.

Shake, Rattle, and Roll

One of Allie's constraint milestones is for her to take a rattle, hold onto it, and shake it with Righty. Today, we get to put a big check by that one. She gets extra points for doing it while balancing on a bench.

Saturday, January 14, 2012

Big Pusher

I just wanted to post this photo of Allie working out at constraint therapy last week. She actually pushed herself up to sitting (with some assistance) using just Righty. It wasn't very long ago that we could not force her to put any weight on her right arm.

Swim class with Daddy went well today. Allie surprised him by forcefully weaseling Righty out of the towel after class.

Friday, January 13, 2012

Back to the Grind

Allie loves peas, as long as she doesn't have to eat them. Check out her grab!

She went to her constraint therapy today but got excused from her physical therapy so that she doesn't get overworked as she is adjusting to her new medicine. Instead of PT, she got to hang out with her daycare friends and relax.

Thursday, January 12, 2012

Terrible, Horrible, No Good, Very Bad Day

Allie had a seizure today and got in for an urgent EEG (picture above) and a neurology appointment to see what was going on. The EEG showed some "frequent" seizure activity and she is now on anti-seizure medication. The rule is that she has to be seizure-free for 2 years on the medication before her neurologist will let her come off of it. Allie had her first dose tonight (hidden in some delicious chocolate pudding). We will wait this out and hope for the best.

Wednesday, January 11, 2012

Wrist Rotation and Righty Action

Check out how Allie is trying to open the little door and pull off the phone. Before we started doing the constraint therapy, Allie had some motion in her right shoulder but not much else. We have noticed a big difference in her willingness to try to do things with Righty, even without the splint. This morning, I dumped a bunch of toys on her right side to entertain her while I finished getting ready for work. Her first reaction was to try to grab her favorite toy turtle with Righty. She quickly realized that using her left hand would be more productive and she decided to use it instead, but I love that she instinctively tried to use Righty. A little bit later I looked over at her and she was holding out the turtle with her left hand and trying to put it in Righty.

Another thing we are working on is supination (wrist rotation---see the image to the right). To encourage Allie to rotate her wrist, her constraint therapy OT suggested that we put a sticker on her right palm. Sure enough, Allie pulled off a full 45 degree rotation (enough to get a good view of the sticker) and then brought her hand to her mouth to eat it.

Sunday, January 8, 2012

Allie, the Master of New Activities

Allie had a great weekend!

Today, she held herself in this amazing position. In case you can't tell, she is holding herself up on 2 knees and one arm. Righty even made an effort to help out. Her PT recommended that we hang out on tummy time with her to keep her company and hopefully encourage her to spend more time on her stomach. It totally worked. We were able to get her to stay in tummy time longer and be happyish for most of it.

Today, Allie was chilling out on her stomach with Jonathan and me right by her when she reached out and pushed her big red button toy with Righty. This was the first time---ever---that she did anything productive with Righty while on her stomach. It is hard to believe what a little bit of right handed practice is doing for her.

Saturday, January 7, 2012

Water Babies with Daddy

Today Allie had her first morning of swim class called "Water Babies". It will be a 6 week long course at the local county swim center taking place on Saturday mornings from 10:20 to 10:50. Jonathan will be in the water with Allie for all of the classes, hence the "with Daddy" in the title of this post.

Allie's first reaction was exactly the same as when we get in the tub for her bath time at home: delight. She very much enjoys being in the water and had no problems getting all the way in (as long as Jonathan was holding her, of course). When the class started the instructor had us do...

1) Get in the water up to the shoulders.
2) Get ears wet.
3) Rest head on parent's shoulder to float on backs (keeping chins up).
4) Roll over in the water to float on tummy with chins up.
5) Hold onto the side of the pool (Allie had trouble with this, more on that in a minute)
6) Get used to moving through the water forward and backward.
7) Sit on the edge of the pool and go in and out several times.

To get the kids comfortable in the water a lot of floating toys were thrown into the pool when the kids got past step 2 in the above sequence. Allie spotted a green turtle and tried to make a run for it. We got to it before the neighboring baby did and she would not lot go of it for the remainder of the session, hence why she had a hard time holding onto the edge of the pool!

Towards the end of the lesson Jonathan could tell she was getting tired of being in the water. Whenever he would take away the turtle she would begin to pitch a fit. Even with this it was all-in-all a good first lesson. We are looking forward to next Saturday!

Week 1 of Constraint Therapy

This week was the first of Allie's 11 weeks of constraint therapy. Her evaluation was on Tuesday, her splint was made on Thursday, and her first (and only so far) day of therapy was on Friday.

Nothing much was different after the Tuesday session and Allie didn't do much on Thursday. But... when we got home and Allie got to try out her splint, she went crazy with her right hand. She started swatting at toys with Righty, trying to grab them, raking her fingers over objects, opening her fist, and feeding herself. It was amazing! The two photos on the left were taken after about 10 minutes in the splint. It seems like Allie just needs a reminder to use Righty.

I put a graham cracker on the ground and she was trying desperately to pick it up. Much to my surprise, she succeeded! She grabbed it, all be it in a little bit of an awkward grasp, brought it to her mouth, and took a bite!

She makes an adorable concentrating face while she maneuvers Righty and I love thinking about all the brain connections each movement is making.

Friday's session was great in that Allie just played and showed off a lot of her new Righty skills.

After her constraint therapy, Allie went to daycare and one of her physical therapists came to see if Allie would tolerate a PT session there. She didn't love it, but it had been a few weeks since we had seen her and the session was a good reminder of all the activities that we should be doing but had slipped out of our mind.

Allie's PT did have some encouraging words: she said that Allie's recovery is the most impressive recovery that she has seen in her 16 years of doing physical therapy.

As a testament to how amazing Allie is doing, I submit the following photo of her holding her own bottle. Note that she is doing it with just her right hand. Way to go Allie!

Tuesday, January 3, 2012

Constraint Therapy Evaluation

Allie had her evaluation for the constraint therapy program today and everything went perfectly. Allie liked her therapist, Jordan, and was mostly fine doing all the tests that she asked of her. All of Allie's evaluation was filmed. At the end of the program, the same evaluation will be repeated so that we can see a before and after of the skills that Allie will learn. We are very excited!

The best news we got today was that there was a scheduling miscommunication and Allie will be getting therapy Tuesdays, Thursdays, and Fridays instead of Monday through Friday. This could not be better for our work schedules. I don't usually work on Tuesdays and Thursdays anyway so I can take her on those days and Jonathan is working from home of Fridays and will be able to take her on those days. It really could not have worked out better.

We will have a total of 30 1-hour therapy sessions (spanning 11 weeks) where Allie will have a resting hand splint (like what is shown to the right) put on her left hand. The splint will be covered with a stocking all in the hopes of encouraging her to use her right hand. Allie will have a similar splint made for Righty to wear at night when Allie is sleeping. The Righty splint will help to help stretch her thumb muscle, which is the tightest and most obvious part of her cerebral palsy.

Jordan said repeatedly that Allie is a lot more capable than she was expecting. In addition to the Kennedy Kreiger Institute where Allie will be having her therapy, she also works with kids in an early intervention program similar to the Infants and Toddlers program that Allie is in. Allie was also very chatty with Jordan and wanted to tell her all about her daddy.

Allie: "Da da daadaddadd DA!"
Jordan: "Really, Allie? Tell me more!"


Here are some of the mini-goals that Jordan has in mind for Righty. Keep in mind that she made these goals without having ever met Allie.

1. Grasping a toy for 5 seconds. (She currently has a hard time independently grabbing an object but once she has it, she can hold on to it for a long time.)

2. Grasping a toy with finger extension and abduction---basically going from a fist to a fully stretched right hand, comparable to how you would hold your fingers out to tell someone you want 5 of something. (She is just starting to try to abduct Righty and are really hopeful that therapy will help push her along.)

3. Shoulder flexion of at least 100 degrees. (She has pretty good shoulder flexion but it takes a lot of thought. We hope this movement becomes a little more natural with the therapy.)
4. Consistently reaching to toys placed at midline of body. (Allie currently doesn't do this at all.)

5. Sustaining grasp on toy and successfully bringing toy to mouth. (She can hold an object and bring it to her mouth with Righty, but she does move her head around to help shorten the distance between hand and mouth.)

6. Protective extension forward to quick weightshift---see below how the girl's arms both go in front when her therapist pushes her forward. (Allie is inconsistent at best on this. She will put her left arm out but usually not her right.)
For the next few months, this is Allie's therapy schedule:

Mon: free!
Tues: Constraint Therapy (CT) in the morning, Physical Therapy (PT) at the Children's Hospital in the afternoon
Wed: free!
Thurs: CT in the morning, Speech Instruction at our home in the afternoon
Fri: CT in the morning, PT at daycare in the afternoon
Sat: Swim class in the morning
Sun: free!

We are putting both of Allie's other occupational therapies on hold until we figure out what her schedule will be like. The constraint therapy counts as occupation therapy so we didn't want to push Allie too much with OT. We are also considering an additional PT session starting soon. We really want her to crawl!

The program officially starts on Thursday and Allie will be fitted for the resting hand splints. Jonathan and I both left today feeling very encouraged by the revised weekly schedule, the positive way that Allie responded to the therapist, the ease at which we were able to travel to and from Baltimore, and the plan for the whole modified therapy. Jordan warned that not all progress is permanent, meaning that even after the program, Allie may not voluntarily do things with Righty that she has shown she is capable of doing during therapy. That's OK. We just want to make sure that she has all the opportunities possible. The more she can learn that she is capable of now, the easier things will be in the long run.

Monday, January 2, 2012

Don't you dare take the duck!

Allie loves bath time like nobody's business. I think her favorite part of the bath is playing with her rubber ducky named Donut. She isn't allowed to take her bath toys out of the bathtub so when bath time nears a close, she starts clutching onto Donut as if her life depends on it.

We have Allie's constraint therapy evaluation tomorrow. Here's to hoping that she doesn't cry and protest throughas the entire thing.