Monday, February 27, 2012

Giggles




Giggly Allie was super cute tonight. She was getting the biggest kick out of us blowing on her face.

Her appetite has completely vanished now that she is almost off the ACTH. She ate about one meal's worth of food spread throughout the day.

Her butt-scooting is taking off. She can scoot a few feet to get around and rotates without a problem. She is very proud of herself, and we are very proud of her. She loves her bookshelf and scoots over to it whenever she can.

Also, check out how she is playing with both of her hands on the picture below. I love it!









Sunday, February 26, 2012

Breaking in New Shoes


Allie's physical therapists and physical medicine and rehabilitation doctors (called physiatrists) recommended that we get her some hard-soled sneakers with arch support to help her with her standing. They made a huge difference for her and she is much less wobbly when she stand up now. Plus, they look super cute.

She has also begun butt scooting to get around. She has the rotation component of the butt scooting down but is still working on the distance moving. To get between two points, she rotates back and forth, pivoting her way to her desired location. It is weird but at least she is moving.

Thursday, February 23, 2012

Two Weeks Seizure Free!


One of Allie's teachers stopped by to visit the other night. Allie was so happy! Her teacher made her a book with big pictures of all of her classmates and a poster of Allie throughout her time at daycare. Allie loved it! She flipped through the book, screaming and hitting all the pictures of her friends as she went. It was really nice to see that she remembered everyone.

Allie has also started doing all her therapies again and they are going very well. She has been taking tummy/side time pretty well...



... and is rocking at her sitting on a bench and twisting...


... and standing pretty well with just holding hands...


... and her side sitting is getting more natural.


After a long day, a bath was in order and then off to bed.


It was a good day to be Allie.

Tuesday, February 21, 2012

Happy Girl

Jonathan and I are enjoying Happy Allie so much! She has even started laughing and chatting again.

This morning, we woke up to Allie babbling at us from her room, which is something we haven't heard in weeks. Then, during breakfast, she broke out in a full-blown giggle. It has been at least a month since we heard an Allie giggle. Poor girl has had a rough few weeks.
















"That baby up there looks pretty happy!"













Monday, February 20, 2012

Book Lover

Allie and I sat around this morning and read a bunch of books together. She was loving it. Turning pages, pointing out things, and chatting with me about it.

When I tired of reading, Allie kept going. I sat her down next to the bookshelf and she continued to pull books off the shelf and look through them. Check it out below.

Sunday, February 19, 2012

Happy Baby!


Happy Allie is back. She is starting to come out of the angry zombie fog and was actually laughing and smiling today. We missed Happy Allie so much!

Friday, February 17, 2012

Good News Day

We got the results of Allie's MRI today: no change!

No change means that there are no other noticeable areas of concern, which is a great thing. They forgot to do the MRA, which is the part of the test where they measure blood flow in her brain (don't you hate it when that happens?) but Allie's neurologist does not want to have Allie re-sedated to have the MRA done. She said that Allie's previous MRA was "beautiful" and she didn't expect to see any change in it anyway, especially since the MRI looks so constant. One minor area of concern was that Allie's white matter in her brain is a little smaller than how it should be, but this type of shrinkage is very common on ACTH and should return to normal pretty quickly once she is off of it.

Jonathan also took Allie in for a follow-up EEG and everything looked really good. The neurologist was able to stop by and give Jonathan a preliminary reading and said that things look "much better than the 23-hour EEG" in that there was no obvious seizure activity. Allie's EEGs are not as straightforward as a typical brain. Abnormalities will always show up because of the damage from the stroke so things are not always easy to read. These EEG results will get a thorough look over to make sure that the preliminary results are as great as we think they are.

Allie has now been seizure free for 8 days. She is 2 days in to the ACTH wean. The schedule goes like this:

2 weeks (Feb 2-16): 0.4ml 2 times per day
3 days (Feb 17-20): 0.3ml once a day
3 days (Feb 21-24): 0.2ml once a day
3 days (Feb 25-28): 0.1ml once a day
6 days (Feb 29-Mar 5): 0.05ml every other day

And then we are done!

Starting in a week (assuming the seizures don't come back), we will be reducing the Topamax to a lower dosage. Right now, Allie's dosage is pretty high and we want to bring it back down to "normal" range. I'm hoping that knocking out so much of the medication will help bring Allie out of her fog. She has been a bit of a zombie baby lately.

Thursday, February 16, 2012

Allie's Gators


Our dear friend Abby Locke has set up a team for the National Walk for Epilepsy in Washington DC on March 31, 2012. Jonathan, Allie, and I have all joined Allie's Gators and will be walking to show our support for epilepsy awareness.

I knew nothing about epilepsy until Allie started having little jerks that I never would have associated with seizures. Through her braveness, we have learned a lot. Please support Allie's Gators and the Epilepsy Foundation by participating in the walk or donating to our team.

Click here for Allie's Gators main page. Please take a moment to view our individual pages. Mine can be found by clicking here. Jonathan's is here. Allie's is here. And, our team captain Abby's is here.

Please be aware that Jonathan and I are in full-blown competition over who can raise the most money. I just want you to think about who maintains this blog and posts all the adorable pictures of Allie... I think your choice is clear.

Thank you!

A Year in the Life of Allie












Our Not-So-Little Baby

Jonathan and I broke down and ordered a new carseat yesterday. It turns out that our little baby is not so little anymore!

She just had her 12-month checkup and here are her stats:

Height: 29 3/4 inches (75th percentile)
Weight: 23 lbs 3 ounces (81th percentile)
Head Circumference: 86th percentile

We definitely have a big baby. Just look at the difference between her now (left) and when she was just over a month (below).

It is strange because I know she has gotten bigger but she still looks like the same little baby to me. I always heard parents talk about how their grown children are still there babies; now I get it.

In other news, yesterday was day #6 of no seizures. She has a little bit of a stuffy nose that we are keeping an eye on because the ACTH lowers her immune system. And, we start the wean down of the ACTH today. Allie will only be getting one shot a day from now on.

I think she is understanding a lot more of what we are saying than we give her credit for. Today, she was whining and we asked her what she wanted: she signed for milk. We asked her how big the baby is: she raised her right arm to show us ("Soooooooo big!"). We said bye and she waved. I can't wait until she can say more.

Tuesday, February 14, 2012

Seizures and MRI


Whisper: Today was day #5 of no seizures.

That is all that I am going to say about that.

Allie had a second sedated MRI today. We do not know the results yet, and we won't know anything until her neurologist gets a chance to compare this MRI with the previous one. We are hoping for no change. Tom and my grandma came with us to the hospital. I know that the sedation for the MRI is not really a big deal but I was a nervous wreck during it.

Happy Birthday, Allie


Our baby girl turned 1 on Saturday! She loved her first cupcake and opening presents. Here are some pictures of the highlights.









Friday, February 10, 2012

Another day, another doctor’s appointment


Allie got to see an epileptologist at the Children’s Hospital today.

First off, I want to (once again) say how amazing the Children’s
Hospital has been to us. I noticed a modified spasm on Wednesday
where her jerk was only on the right side. I caught a video of it and
emailed it to Allie’s primary neurologist after business hours on
Wednesday. The neurologist emailed me back at 10pm saying that we
might want to add a new drug (called Trileptal) to Allie’s current
cocktail and see if it helps. We emailed back some questions about
the drug and its possible side effects. She called me on Thursday
morning to go over my questions, talk about our plan, call in the
prescription to our pharmacy, and set Allie up with another
neurologist who specializes in pediatric epilepsy (hence the name
epileptologist). The epileptologist didn’t have any openings until
April so they made us an appointment with the physician’s assistant
and promised us that the doctor would crash our appointment and we
would get an “unofficial” appointment with the doctor. How amazing is
that?

Anyway, the epileptologist was great and was able to give us a much
better idea of what Allie’s seizures are and what they mean for her.
She said that the neurology/epilepsy team consisting of about 8-10 MDs
and their assistants met the other week to discuss Allie. We had
known that this meeting happened but we had only heard that the
consensus was to treat for infantile spasms using ACTH. Apparently
there was some discussion about whether to term Allie’s condition
“Infantile Spasms”, but the decision was that she probably has IS but
that it doesn’t really matter what we call it. Allie’s seizures look
like spasms but they also look like they are transforming into other
types of seizures. Her EEG shows some “complex partial” seizure
activity, her jerks look to be “myoclonic”, she is having some “tonic”
seizures that were caught on the video 23-hour EEG, and this new
right-side-only seizure looks to be a “simple partial” seizure. I had
no idea that so many types of seizures existed but, just like
everything else, Allie continues to surprise me.

Right now, Allie is taking ACTH for the IS, Topamax as a
broad-spectrum drug to combat the multiple seizure types, and Trileptal
for the simple and complex partial seizures.

The epileptologist also went into a little detail about Allie’s long
term prognosis. We had read all about IS and how most kids end up
with mental retardation. This is our biggest fear. The doctor
explained that much of the retardation comes from the underlying
condition that is also causing the IS, and it is not necessarily the
IS that is causing the retardation. In Allie’s case, her IS/seizures
are caused by the stroke damage and therefore she will most-likely not
fall victim to the mental retardation. Her prognosis with the
seizures is virtually the same as with the stroke, just with seizures.
She explained it as seizures can interfere with a train of thought,
which can inhibit learning, but the seizure does not interfere with
the brain’s ability to learn. Specifically, the seizures are not
causing brain damage but they may stop the brain from functioning
constructively.

The goal is to get the seizures under control as soon as possible,
hopefully through medication. We are going to try to the different
medications and see what works for Allie.

There is an alternative approach if the medication fails and that is
surgery. The thought of brain surgery is so far from appealing that I
don’t think I can really accept that possibility right now. I love
her brain! I want to keep it all there! But, if the medications don’t
work and she starts to show cognitive decline, I think this is an
option that we may have to consider. Let’s cross that bridge if it
comes.

The doctor signed off on Allie’s continued therapy, which means that
she will be back to the grind once her immune system has recovered
even if her seizures persist.

In other news, Allie’s 1st birthday is tomorrow! Can you believe it?
I just realized that Jonathan and I didn’t get her anything. We
didn’t get her anything for Christmas either. What strange parents we
are. Many of her family members are coming to wish her a happy
birthday in person. She is a lucky girl.

Lastly, today was a seizure free day. Let's hope for more of these!

Tuesday, February 7, 2012

Good Day


Allie had a really good day. She had 2 spasms this morning but that was it (down from over 50 at her peak). We are not going to get our hopes up too high but today was encouraging.

The medications are making Allie a bit sleepy. She slept a solid 12-hours last night and then a 3-hour nap today. She was a very happy baby this afternoon.

We had our first appointment with the in-home nurse today. The nurse was coming to test Allie's blood pressure and her glucose levels. Except, the nurse couldn't get a blood pressure reading and we ended up going to her pediatrician's office to get it done anyway. Total waste of time. But her blood pressure and glucose were great, even better than they were on the prednisone.

Monday, February 6, 2012

Life's still moving



The seizures continue but they are not stopping Allie in all her amazingness.

Here are some of the new things that she has done the past week:
  • Using sign language to ask for milk,
  • Fed me a cracker,
  • Learned to play the xylophone by banging her hammer on it,
  • Beat the hell out of her rubber ducky with one of her toys in the bathtub (banging toys is great---banging toys that are moving in the water is even better),
  • Explored the soap tray in the bathtub, reaching up and pulling on it,
  • Knocking over towers of of toys,
  • Making a clicking noise with her tongue, and
  • Pointing to things with her index finger instead of her whole hand. We read a book where there is a big picture of a pig and the words "Now I kiss you on the nose!" Then, we push the nose and the page squeaks. The past couple times that we have read the book, she turns the page and immediately points to the pig's nose and smiles. Smart girl!
We are still waiting for the ACTH to kick in. It often takes a few days for it to start working (3-5 days seems to be the typical time frame but we have heard of it taking longer and still being effective). She is as bloated as can be and was a little irritable today. We think that means that the medication is starting to do it's thing. It is hard not to get our hopes up too high but we are optimistic.

Saturday, February 4, 2012

The New Plan

A lot has happened this past week, so I will give a little recap of each day's events.

Wednesday

Tom, Allie, and I went to a cardiologist appointment for her to get her heart checked out.

She had an EKG, where they measured the electrical signals coming out of her heart: she passed with flying colors! Then, she had an ultrasound of her heart. They found a small heart defect known as as an atrial spetal defect.

The heart works by pumping blood from the body into the right atrium (the blue side in the diagram to the right). Blood is then pumped into the lungs where the blood is oxygenated and it returns into the left atrium (red). Then the oxygenated blood can return into circulation around the body.

Before a baby is born, the mother is oxygenating all the blood for the fetus and the fetal heart uses a shortcut and skips the right atrium. This shortcut is possible because of a hole that is present between the right and left atriums. When the baby is born, this hole should close up and the right atrium should take over the job of oxygenating the blood. However, in about 25% of people, this hole does not close of perfectly. This can causes things like heart murmurs and heart palpitations.

In Allie's case, the flap that was supposed to close the hole is just a little off. It wasn't entirely clear that there was even any blood moving through this alleged hole but the doctor wants to keep an eye on it to make sure it isn't creating a problem. The cardiologist assured us that this is not a major concern as most people never have any symptoms from it. In fact, said that she has a hole substantially larger than Allie's and it has never caused her any problems. Regardless, Allie is getting another heart ultrasound in a year to see if the hole has closed itself (40% of cases close completely on their own).

I had to go to work after the appointment, so Tom took Allie home and babysat her all day. Judging by this picture that I found on our camera, they had an exciting afternoon of playing baby hide and seek.

"Where's Allie?"
Allie moves into view from behind an object.
"THERE SHE IS!"
Smiles.



Thursday

Allie had a busy morning. She had an appointment to get her head-shaping helmet refit and then an appointment with her occupational therapist to get a resting hand splint made to help stretch out Righty while she sleeps. She then went home and took a nice long nap.

When Allie woke up from her nap, she started having the same types of jerky seizures that she was having before. I took a quick video of one, sent it to her neurologist to update her, and then Allie started lunch. I was disappointed to see the seizures return but it wasn't entirely unexpected. There had been a few breakthrough seizure sets lately and we were starting to reconsider the Prednisone and Topamax cocktail that she was on. We were even considering having Allie admitted into the hospital that day to start a new more intense treatment.

Allie was sitting in the high chair tossing back her Cheerios when she suddenly slumped over and froze. She stayed like that for a couple seconds and then she popped up and grabbed some more Cheerios. I wasn't entirely sure that she wasn't just playing with me but she definitely got my attention. Then she did it again except she froze off to the side and I could see in her face that she wasn't playing. I immediately started packing Allie's bag while I was on the phone with the Children's Hospital having her neurologist paged. The doctor got on the phone and said to bring her in to the emergency room right away.

We spent a few hours there until we got moved to a room and prepared for a long stay.

The plan was to start Allie on an injected steroid called ACTH. This is the most intense medication that they have for Infantile Spasm. It requires twice daily injections, typically 3-5 days in the hospital, and has a litany of scary side effects including a dramatically lowered immune system, increased blood pressure, kidney failure, and bloating. We had been hoping that we wouldn't have to use this medication but at this point we were ready to try anything.

Allie's ACTH for the 6 weeks that she will be on it costs $90,000 and had to be shipped in from a specialty pharmacy in Florida.

Her neurologist had told us that Allie would get the initial injections from the hospital's very limited supply of ACTH and that we would need to bring our own in as soon as it arrived for the remaining injections. This seemed like a reasonable plan.

Later that night, the neurologist who was working our floor came in and said that Allie would not be receiving any of the hospital's ACTH since we had our own being delivered the next day. Jonathan and I sat there in total disbelief. Could this doctor really be saying that they would not treat our daughter because we have medication coming a day later? Once the shock wore off, my tears followed. What ensued was a near-hysterical crying fit as I sobbed and tried to convince, beg, and plead them to help Allie. The doctor just kept saying "we only have one vile of the medication and we want to use it judiciously." After what I guess was about 10 minutes of my sobbing, he agreed to ask his boss to weigh in on the decision to deny Allie treatment. Soon after, the doctor came back and said that Allie will get her first dose that night from the hospital's supply.

Apparently this issue was that three kids had come in that night to be treated for Infantile Spasms and each vile of medication is supposed to be attributed to only one patient even though each vile contains enough ACTH for about 2 weeks. Allie's medication was arriving sooner than the other kids so this doctor had decided to prioritize the other patients. But, his boss spoke with the pharmacy and had the vile partitioned so that all three kids (including our Allie) got the treatment that they needed until their own medication could arrive.

That night, Jonathan went home to await the early morning delivery of Allie's ACTH and I stayed in the hospital with Allie.


Friday
Friday was mostly just a day sitting around in the hospital. Bonnie flew into town late on Thursday night so Allie had the surprise of hanging out with Gama all day. We saw the neurologist from the night before around a few times and made sure to give him the stink eye.

Allie had quite a few visitors. Her PT and OT both came to visit. She also met with a Ophthalmologist who gave her an eye exam and said she looks good but they will have to do more tests as she gets older. A lot of stroke kids have vision issues. A developmental psychologist also came to meet her and get some information for an upcoming appointment.

Since we have to give the medication to Allie by injection, both Jonathan and I had to demonstrate that we were capable of giving her a shot. Jonathan took Friday night and passed, leaving Saturday morning for me.

That night, Jonathan stayed in the hospital and I went home and got some sleep.

Saturday
Bonnie and I got to the hospital early and had another uneventful hospital morning awaiting my injection test. I passed! To our surprise, they let us leave the hospital. They said that Allie's vitals seemed stable and her blood/urine tests all looked good. We will be having a nurse come to our home twice a week to check Allie's blood pressure and glucose levels.

Her neurologist recommended that we pull her out of daycare while she is receiving ACTH because of her compromised immune system. Quite a few ACTH patients have died from infections and there is no reason to take a chance with a building full of germy kids.

When we got home today, Allie was so excited. She was chatting and playing and being a totally normal kid. Her face is starting to bloat from the treatment, which I take to be a sign that her body is starting to work with the medication. We were told that it takes between 3 to 14 days for the medication to take full effect. This is the best medication there is and is largely successful (one clinical study showed that ACTH stopped Infantile Spasms in 87% of patients).

We are anxious and nervous and scared, but also hopeful. It is horrible watching Allie go through all this but she is still our regular baby. We haven't noticed any of the cognitive decline or personality change that often accompanies IS. Hopefully we caught it early enough and this will just be a stepping stone in her recovery.