Friday, August 31, 2012

Insurance Hassles

We have been having some hiccups with Allie's insurance lately, all of which makes us nervous. We have a HMO that up until a couple weeks ago was fantastic. We have unlimited therapy, they haven't balked at all the specialists that we have seen, didn't hesitate to cover her $90,000 for a month of seizure medication, paid for her head re-shaping helmet (which we were told insurance companies rarely cover), and have been free flowing with the referrals to try different types of less-traditional therapy programs (constraint and aquatic).

However, they recently got a pediatric neurologist on staff and want us to meet with her instead of the pediatric stroke specialist who we have been seeing for the past year at the Children's Hospital. The pediatrician said that it is totally possible that the neurologist will recommend that we keep seeing the Children's group, in which case this won't be an issue at all, but the uncertainty is unnerving. We have an appointment with the new neurologist on Sept 17 and our plan is to make Allie's diagnosis seem as scary and possible so that we get bumped back to the specialist. I am hell-bent on sticking with our neurologist, who has been incredible throughout Allie's care. If all is going well, we will keep meeting jointly with her and Allie's physiatrist every 6 months. It is so cool getting two perspectives at the same time and having one less doctor's appointment. If things are not going well, the neurologist responds to email in the middle of the night and organizes brain storming sessions with other doctors to try to figure out what we can do. I love her.

A few months ago, we ordered a Benik hand splint to help Righty be a little more engaged. Allie has a tendency to fist her hand when she is trying to do something that requires concentration and this fisting gets in the way of her actually using her hand.  This order was placed by Allie's constraint occupational therapist and we were told that it could take a few weeks to get processed. Well, the order just evaporated with the company and we had to resubmit it after over a month of waiting. This order was then denied by our insurance because the provider that the OT used was out of network. Allie has a case manager through our insurance whose job it is to ease the communication between the insurance company and the providers (you know your diagnosis is serious when they bring in a person just to help you manage care). I called up the case manager and she entered a new referral for the splint. Over a week later the splint was denied again because our insurance benefit is for "durable medical equipment" and the splint is made of mostly neoprene, which is deemed non-durable. The case manager is making a case that since there is an aluminum support in the splint, it should count as "durable". The splint costs a couple hundred dollars and we probably would have just paid for it out of pocket if we knew it was going to be such a fight.

Neither of these things are a deal breaker yet (the neurologist may be but we are withholding judgment until after our appointment) but it does raise some red flags. Our open season for changing insurance plans is in November so we may look into our other options just to be informed. I hate messing with an (almost) good thing.

First week in the new class

First day of school

Last Monday was Allie's first day in her new class at daycare.  Jonathan and I were a little nervous about the whole transition but it has gone unbelievably smoothly.  She seems to really like the new teachers and all the new activities.  The teachers sent out the lesson plan for the first two weeks and the theme of the first two weeks is balls.  Balls in books, different sized balls, different colored and shaped balls, balls on the ceiling, balls on the playground... balls everywhere.  Allie loves balls, so we are off to a good start. 

I was dropping her off today and one of her friend's was having some major separation anxiety.  Allie kept looking at him as if to say "pull yourself together" and then she went to go play with some toy cars, giving me a kiss goodbye in the process. 

So far so good.

Wednesday, August 29, 2012

Two Word Sentence

Last weekend, Allie said her first two word sentence: "More water!" ("Moe wawa!"). This is a totally big deal that I almost forgot to share.   This milestone bumps her into a new phase of language development, from learning words to understanding syntax. We are continuously impressed at her language development especially since her stroke wiped out the area where a typical adult's speech center would be (shown to the right). Her brain is doing a great job outsourcing to other areas and all of her therapists are very impressed.

To celebrate Allie's independent steps yesterday, she and I went to the splash park (shown below). We had been to a similar park before for a field trip and she was not the biggest fan, but I figured that we should give it another try since she is now a mature toddler.

Her progression of emotions was amusing.  We walked from our house to the park and as soon as she got within view of the fountain, she started shouting "Wawa! Wawa!"  I helped the excited girl out of her stroller and held her hand as she bravely charged towards one of the spouts (specifically, the one of the very far left in the photo above).  She got about a foot away from it when the first big splash of water landed on her head; she froze and gasped.  The water was cold, the splashing was loud, and the other kids were running laps around us.  I was sure that she was going to have a meltdown.  A couple more splashes hit and a few more dramatic gasps passed, and then she burst into a huge smile and started reaching into the water stream.  We stood in that exact spot for 10 minutes, by the end of which we were both totally soaked.  She had a shockingly good time.
About 100 feet from the fountain, there is a little patch of grass with big rocks that kids are always climbing on and running around.  Allie and I walked over to the rock and she timidly interjected herself in a group of 4-year olds who were having a very serious meeting to establish the rules to their game of tag.  The kids all looked at Allie like "why are you here?" and then at me (I'm holding her hand so that she can walk around) with even more confusion because I am awkwardly standing there, avoiding eye contact, and trying my hardest to not be a distraction.  Eventually, the older kids decide to move their game meeting away from the toddler and her weird mom to another area of the grass.  Allie then made her way to one of the rocks where she could play at her own speed.  She particularly enjoyed picking up  wood chips and throwing them (shown below)---oh, the excitement!  Note how she is using Righty to hold herself up on the rock while she hunts for just the right wood chip.

Tuesday, August 28, 2012

Independent Steps!

Watch Allie take independent steps in the video above!

Today was the first time that she dared to take a step while not holding on to anything or anyone.  Her PT Brooke is showing her the ropes.

In other news, we found out that our new house used to belong to a coworker of our PT and OT.  Our OT came over this morning and had a puzzled look: "I know this place..." Small world.

Friday, August 24, 2012

New House

Last Friday, Jonathan and I bought our first house! Allie now has her own room, a playroom (shown above), and a big back yard to play in.

The play room is special for me because I always wanted one growing up.  I remember that there was a Japanese boy named Tomo who lived next door and he had an amazing playroom.  I would spend hours playing in his play room and being incredibly envious of his cool toys and extra space.  It wasn't until years later, long after my neighbors had moved away, that I was informed that Tomo and his family didn't speak any English.  How did I not know this?  We played together all the time?  I think I was blinded by the playroom.

Allie has been pulling up to stand, cruising around, and crawling all over.  We are very happy with her physical therapy advances over the past couple weeks.  However, she has been very resistant to her constraint therapy over the past week or so.  I think the problem is that she mastered the activities that we have been working on for so long and we are now pushing her to do more.  The poor girl gets so frustrated and just starts crying big tears.  It breaks my heart.

We have found some neat bi-manual activities where she uses Righty as a helper.  I think these are probably more meaningful activities but I really want to push her more.  Maybe she just needs a break to focus on PT?  I don't know but it's frustrating and painful watching her struggle.

Allie has learned a few new words in the past week.  When she falls down from cruising she says either "oh geez" or "doh".  She hugs her stuffed animals and calls them "baby".  And, she asks for water "wawa" when we put her to bed.  She's growing up so fast!

Wednesday, August 15, 2012

Cruising with Righty

So close...

Using Rigty while cruising is the first meaningfully bi-manual activity that Allie has figured out how to do.  Before, she would use Righty if her left arm was unavailable and occasionally to hold a larger object, but Righty has never been more useful than it is while cruising.  She uses Righty to reach for and play with toys that she has cruised to.  She uses Righty to stabilize herself and to lead her transition between furniture.  

We have set up a furniture obstacle course around our home (see below), which is great for Allie and very annoying for us.  We often have to climb over furniture to get between rooms.  She is getting much better at cruising to the left where she has to trust her right leg more to support her.  She is also getting at cruising between disconnected pieces of furniture.  

Where to next?

Today was her last day in her original classroom and Friday will be her first full day in her new classroom.  Here she is playing on the playground when we picked her up today.


Monday, August 13, 2012

Allie Pulled Up!

I went into Allie's room this morning and she greeted me by popping up in her crib.  This is the first time that she has stood up from sitting without any help at all.  After a quick outfit change, she shimmied (half crawl/half butt scoot) over to her chair and pulled herself up again. She did it a couple more times shortly after too.  I love that when she gets something, she goes at it full force.

Friday, August 10, 2012

Six Months Seizure Free

Allie and the girls

It is hard to believe but today is the 6 month mark since we last saw a seizure.  It is strange because it simultaneously feels like it happened yesterday and like it never happened at all.  It seems like the seizures, the ACTH, and the quarantine were all part of some story that I heard about another kid.  We are so fortunate that we have the luxury of being removed from all of that.

Today was also Allie's last full day in her daycare class with her friends (shown above).  Starting next week, the kids will start working their way up to a full day in their new classroom with their new teachers.  Allie then has a week off and she officially starts in her new classroom the week after that. 

Jonathan and I had a meeting with her two new teachers today to fill them in on Allie's diagnosis, therapies, and seizure precautions.  I hope that we didn't scare them!  The general gist of what we wanted them to know is that we don't want Allie babied because she is disabled.  It's OK if she gets frustrated and it's OK if she falls and hurts herself trying to do something out side of her comfort zone.  She is never going to learn if she doesn't try.  Allie needs to figure out compensatory strategies for challenging situations and it is better if she figures these things our sooner rather than later.

We have recently implemented some routine changes to improve Allie's independence.  She is off of bottles completely, which have been replaced with sippy cups, straw cups, and regular cups that we scatter around our home so that she can get a drink by herself whenever she wants it.

She has a special Planet Box lunch box that she can open easily with one hand (shown below).  It is a really cool lunch box that was recommended on the hemiplegia listserv that I am on.  The idea is that Allie will start using this now so that she will have it mastered by the time kids actually start needing a lunch box.

Allie and I had an interesting experience this morning that may be an indication of conversations to come.  One of the daycare teachers brought her 9 year old granddaughter to daycare today and the girl wanted to know why Allie had pink tape all over her arm.  The teacher seemed a little embarrassed and said "that is just what she wears" and she told the girl to go do something else.  The girl looked ashamed that she had asked so I jumped in to explain that Allie's right hand is not as strong as her left and she wears this kinesio tape to help stretch her hand so that she can use it better.  The girl seemed perfectly content with the answer and she and Allie continued to play together.  I think it is perfectly natural to be curious about the tape (or anything else) but I'm worried that shaming kids for asking will make Allie seem "weird" instead of "different".  I hope that over the next couple years we can figure out how to explain Allie's cerebral palsy in a way that is factual and eliminate some of the inevitable stranger danger impulse.  

I have heard stories of moms who present to their kids' classes throughout the early elementary school years to give age appropriate explanations and demonstrations.  Sometimes they have hand challenges where they take a volunteer kid to demonstrate what it is like not to be able to use your hand as you would like to.  Other kids in the class are tasked with constraining the volunteer's hand into a fist and then the volunteer is asked to try to open his hand.  Hopefully this gives a memorable example of not being able to fully control your hand. 

Jonathan and I are currently trying to find the best way to explain to strangers why Allie isn't walking.  I usually just blurt out that Allie had a stroke before she was born and has cerebral palsy from it.  Jonathan thinks this is way too much information to give the cashier at the grocery store or the other mom at the park.  He may be right but I haven't figured out how best to respond yet.  I'm sure we will converge on some standard response soon, hopefully in time to teach it to Allie.

Monday, August 6, 2012

Army Crawler

Playing in the fort with the girls

Here is a video of Allie army crawling across her room to get to her singing dog.  She REALLY loves the dog.

Sunday, August 5, 2012


A few months ago we dropped crawling from Allie's urgent physical therapy goals and decided to focus our PT efforts on walking.  Well, Allie seems to be figuring out how to crawl just fine without our constant meddling.  The other day, she popped up on quadruped (like above but with her butt higher in the air) and started scooting her knees forward.  She hasn't quite figured out how to coordinate her four limbs to work together but we are just thrilled that she is so willing to bare weight through her right arm and to explore new positions.  It is a little hard to tell in the photo above but her right hand is totally open.  This is a great stretch for her hand and a wonderful exercise for her whole upper body.

So, her quadruped crawling (aka "four-point crawling") is in progress but is definitely emerging.  We saw her "army crawl" (pulling herself along with her belly on the ground) for the first time today.  It would be so cool for her to figure out crawling all on her own!

In other news, Allie's language development is really picking up.  I was cleaning her yogurt-covered face off tonight and asked her: "How did you get so dirty?"  She happily declared "DIRTY!"  Below is a photo of her getting cleaned up after one of her more messy dinners.

Wednesday, August 1, 2012

Pop Top

Allie had quite the night with Righty.  She has been battling the pop top toy (shown above) for months.  I naively bought it for her when she was about 6 months old and about a month ago she finally figured out how to use her left hand to push down on the head and make the beads inside pop around.  The thing is tough to push down! 

Tonight, we were doing constraint therapy and she reached for the popper with Righty and pushed it down!  I have never seen her do something that required so much directed strength with Righty.  She did it about 5 times until we switched to Righty page flipping on her favorite book.