Tuesday, September 25, 2012

New OT

Another apple picking picture

We have been having some scheduling problems with Allie's occupational therapist (OT) lately.  In the span of two months, she went on vacation for two weeks without offering to make up the missed sessions, went to our old apartment once instead of our new house and blamed us for not telling her (even though I'm sure that I did), and had a colleague call one morning and abruptly cancel for her and say that she wouldn't be able to make the session up.  And then we were out of town for a week in MN.

So, instead of getting OT every week, she had 3 sessions in the span of two months.  She also wasn't very good at responding to calls or emails and there was often several days between my call or email and her response.  I was annoyed and called the office to see what we could do about switching OTs.  The manager that I spoke with assured me that the scheduling/communication issues could be resolved and the OT agreed to make up the session that she abruptly cancelled and we will have a substitute OT to make up two of the others.

On top of our scheduling problems with her, she has always had a downer attitude about Allie.  Every time Allie would get frustrated and cry, the OT would say "Oh, typical Allie... (sigh)".  I'm sorry but Allie is not a whiny kid, especially given all that we put her through.  

Jonathan had the unfortunate duty of meeting with the OT for the first time after my call to complain.  He said that she seemed annoyed and started making dismissive comments about what Allie would ultimately be capable of doing with her right hand.  We chalked this up to hurt feelings and hoped that it would be better.

I had the next session with the OT today and things were just as tense.  We spent the whole session working with Allie's left hand.  Then, the OT said to me that she doesn't think Allie will ever be able to do much more with her right hand than she does right now.  I understand wanting to lower expectations and we know that we are being incredibly optimistic that her hand will be moderately functional, but we don't expect it to be perfect.  We just want to make sure that we push Allie now while her brain is plastic so that she can ultimately have more function later, even if it isn't perfect.

The OT also said that she doesn't think that constraint therapy resulted in any functional improvement for Allie even though the "medical evaluation," as she put it, showed notable gains.  She said that it doesn't matter if Allie can move her arm so many more degrees or whatever if she doesn't use it.  I understand her point that we want Allie to use the skills that she has gained more often, but I think the point is that she now HAS the skills.  She is a little kid and of course she doesn't understand that this more difficult arm is useful because most of the things she currently does can be done with one good hand.  But I think that if we keep these skills possible for her, she is going to figure out how and when to use them.  It is like what we noticed when she started cruising: Righty became very useful and---lo and behold---she uses it to stabilize herself and transition between furniture.  She also uses her right arm to hold herself up while she plays with a toy on the ground with her left hand.

I said these things to the OT and she said that those things were all fine but Allie still only uses Righty when she "has to."  My ineloquent response: "Well, yeah, duh!"  Of course Allie is going to favor her left hand!  That doesn't mean that we shouldn't still work on the right.  As she and I were talking, Allie scooted over to her mini pink piano, pulled herself up on it, and started banging on it with both hands.  Then she grabbed onto the side of the piano with her right hand to stabilize herself while she more delicately pushed the keys with her left.  I pointed this out to the OT and she said "Yeah, Allie will use her right hand but only if she has to.  You really have to contrive a situation for her to use it."  How was this at all contrived?  To me, it seemed like a perfect example of Allie using skills that we have worked hard to cultivate through therapy.  I told her that I thought she was being incredibly dismissive of what Allie will ultimately be capable of doing and that I didn't think that was at all constructive.

There was then a long, probably two minute, silence that she broke by asking if we would like to switch OTs.  I said yes.

It will probably take a couple weeks to find a replacement and we will continue seeing this OT during the transition, but good riddance!  We are looking forward to the change.  Hopefully we get someone who can see all the potential that we see and will be as proud of her accomplishments, no matter how small.  

Sunday, September 23, 2012

Fall Kick-Off

Allie had a very active first weekend of Fall.

On Saturday, we all went for a long walk and Allie got to practice walking with one hand held.  She got a full block without a single wipe out.

On Sunday, we went to a local orchard to pick apples and pumpkins.  Jonathan and I were much more into it than she was at first.

 Allie warmed up to the idea as soon as she got to pick some apples.

After we picked more apples than we can eat, we went to go play in the kids' hay and tire yard.

You can tell that she is loving the hay because even Righty had to have a handful of it.

We then went to the farm where Allie saw several goats...

... and a cow.  The cow mooed at her and she mooed right back.

 Then we went to pick out a pumpkin.

Allie had to inspect all of them before she could decide.

All in all, the weekend was a great success.

Thursday, September 20, 2012


Happy, even after a full eye exam
Allie had a busy day of physical therapy and an ophthalmology appointment.  We have noticed that sometimes Allie's eyes look a little turned inward.  We don't see it often but since it is common for the eye muscles on the affected side of hemi-kids to be weaker than the other side, we thought we would get it checked out.

Allie had a neuro-ophthalmology evaluation back in January when she was hospitalized for ACTH and the ophthalmologist said that her optic nerves are a little more fair in color than what he would expect, but this could be due to her fair skin color and is not necessarily a sign of something wrong.  He said that we would be able to assess Allie's eye health more accurately as she got older, but things looked fine for now.  Her epileptologist noted that Allie didn't seem to see things in her right peripheral vision but said that the hand waving test that she was doing was not terribly accurate and, again, we will have to wait until she is older to know more.

Given this previous input, we know that there is a chance that Allie's vision could be impaired in some way but know that until Allie can answer our questions, there is not a lot that can be determined.

The ophthalmologist today basically reaffirmed our two previous concerns: her optic nerves are more fair than normal and she doesn't seem to have great right peripheral vision.  Regarding the optic nerve, the ophthalmologist said that if she saw a kid without Allie's history with her nerve color, she would send the kid for an MRI.  She said that it is totally possible for optic nerves to be damaged looking but not notably impact vision quality.  Regarding the peripheral vision issues, she suspects that Allie has a right visual field cut impacting the right side of both of her eyes.  But, again... we have to wait and see.

The ophthalmologist also noted that Allie is farsighted, which is typical for kids her age, but because of her potential nerve issues we have to monitor her vision development more closely than we otherwise would.

Lastly, and the reason we went the doctor, her eye misalignment: everything looks fine.  She said that Allie may be straining to see close-up objects because of her farsightedness, which may make her look cross-eyed, but she did not see any inherent weakness.  Good news!

So that is her vision update, but let me tell you how great Allie was during this entire appointment.  When the nurse first came in to make sure all of Allie's background was accurate, she said that she was surprised to read such an extensive medical background for such a young girl.  After going through Allie's medications and while Allie was dragging me around the exam room so that she could explore everything, the nurse said "I'm so happy to see that the stroke did not impact her."  Excuse me?  I pointed out that her right side is a bit weak, and the nurse examined further and said "Yeah, OK.  I see that now but I never would have noticed it otherwise."  Pretty cool.  Then the doctor came in and did her pre-dilation exam and said "Well, I don't see any weakness."  I said "Great!  So, her eye looks good?"  The doctor clarified: "Well, yeah, but I meant all of her.  I don't see any weakness anywhere."  Seriously?  Maybe Allie was on a post-PT high.

The doctor then put the dilation drops in Allie's eyes and sent us out to the waiting room.  Here was her waiting room time in photos:

O...M...G... I love these things!
A friend!  Why is he looking at me like that?
He's stealing the toy!
And then yelling at me!
Luckily, Allie and her friend made up and bonded over some goldfish crackers.  He would dig them out of Allie's container and then gently feed them to her.  She liked it.  

Tuesday, September 18, 2012


Our HMO insurance notified us a couple weeks ago that they just got a pediatric neurologist in network so our standing referral for our Children's Hospital neurologist (the pediatric stroke specialist) was denied.  This news was not well received.

Jonathan and I bit our tongue, scheduled an appointment with the new neurologist, and hoped for the best.  Our hope was that the neurologist would be scared away by Allie's diagnosis and bump us back to our original neurologist.

Our appointment started off a little rough.  The neurologist had dislocated her left shoulder the week before and had her arm in a sling.  The very first thing she said to us was directed toward Allie: "Look!  You have right hemiparesis and I have left hemiparesis!"  Hmmm.... it did seem like a great start to compare cerebral palsy with a dislocated shoulder, but we let that one slide.

She then spent the next hour examining Allie and making sure that she understood Allie's story.  Toward the end of the exam, it became very clear that the new neurologist was not going to give us the referral to see our original neurologist.  I asked if she had worked with hemi-kids before and we were surprised at her response: she has worked with over 200 cerebral palsy kids during the past 21 years, treated thousands of kids with epilepsy, and ran a pediatric movement disorder clinic.  Better than we had expected. 

She had some new observations.  She seemed to think that we should consider Botox for Allie's right hand, so we will talk to Allie's physiatrist about it at our next appointment.  The neurologist also said that the Benik splint should absolutely be covered by our insurance and will be noting that in Allie's medical record.  And, she wants Allie to get mitochondrial blood tests done to look for a cause of Allie's stroke.  I have heard about mitochondrial issues with hemi-kids, but I had assumed that the MRI scans looked different.  The other neurologists that we have seen have said that Allie's scan looks like a classic left middle cerebral artery (MCA) infarct (oxygen cut off by a blood clot).  I have no idea if this can be related to a mitochondrial issue, but it doesn't hurt to get tested. 

After our hour long exam, the neurologist took the CDs of Allie's two MRIs to look through in her office.  A half hour later, the doctor came back and simply said "that was a very impressive stroke."  Impressive?  I was so confused by the adjective that I asked what she meant.  She explained that the damage was more extensive than she would have guessed, given how great Allie is doing.  She said that she was particularly impressed with Allie's talking given the stroke location.  I guess that this was intended to be a positive comment that Allie is doing well, it just could have been phrased better.

So, the new neurologist is recommending that we get one more appointment with our original neurologist covered to smooth the transition but otherwise we will be seeing her.  Jonathan and I are trying to stay positive about this.  We figure that we have a few options.
  1. See just the new neurologist.  Maybe she will be great (or at least fine).
  2. Pay for the appointments with our original neurologist out of pocket and use them to supplement our appointments with our new neurologist. 
  3. Change to my company's PPO insurance option so we can see whomever we want, but we would end up paying significantly more every month and have higher co-pays.  We also really like that our current insurance covers all the PT and OT programs that we have wanted to do so far.  Maybe the PPO would too, but there is some level of uncertainty in the unknown.
I think that our plan for now is to try #1, add in #2 as needed, and move on to #3 if it absolutely isn't working.

Monday, September 17, 2012

Allie and Mama in MN, Dada at home

Allie and I spent the past week in Minnesota.  I had a work conference and Allie had some family time to catch up on.  Here is her week in photos:

Tuesday: Arrived in MN and immediately went to play in the pool with Papa

Wednesday: Macaroni and Cheese with Papa---she ate almost the whole thing!

Thursday: Kisses for Gama and for Auntie Sam

Friday: Shopping with Auntie Sam and Papa and then Dinner with the family (I love that Allie is at the head of the big table)

Saturday: Cousin Noah's football game with Cousin Elliot on wagon duty

Sunday: Back home to see Dada.
It was a great trip!

Saturday, September 8, 2012

Baby Bird

Allie LOVE LOVE LOVES her macaroni and cheese.  Jonathan was trying to slow down her woofing in hopes that she wouldn't want to eat the entire box, but Allie was not a big fan of this.  When he didn't have a spoonful ready, she would shout "MORE! MORE! MORE!" When he had a spoonful but it wasn't in her mouth, she would act like a starving baby bird.  Check out our baby bird below.  

Wednesday, September 5, 2012

Flying Dada

Some may ask why Jonathan is leaping around in the window with pruning shears in his hand.  Somehow, this didn't seem strange at the time.

Aside from the obvious distraction in this video, check out Allie's right hand.  It's fisted, which isn't great, but it sure is moving around a bunch.  Her fisting varies quite a bit: some days she is super fisted and other days not at all.  Her physiatrist said that this variation suggests that Allie's muscle tightness is more like dystonia than spasticity.  

My understanding is that dystonia is characterized by tightness that typically comes with other physical movements.  Her physiatrist described it as her brain getting overloaded and mis-sending messages to her arm.  Spasticity, on the other hand, is tightness that stays regardless of what else is (or is not) going on. 

Lastly, I want to point out a term that I never thought much of and used quite often: "spaz".  Spaz is a reference to spasticity.  So, every time I told Jonathan (for example) to "stop being a spaz", I was referencing the disability of spasticity.  I don't feel great about that.

"A Poo Poo"

Driving an ambulance at the park

We have been noticing a huge increase in Allie's vocabulary lately.  It seems like every other day she pops out with a new word.

After dinner tonight, she was crawling/scooting from the dining room to her play room.  On the way there, she face planted when the sudden urge hit to fill her diaper.  After a few grunts and fist pumps, she seemed to be finished and I went to pick her up to change her.  She proudly smiled and declared: "A Poo Poo."  She's her father's daughter.

Mac and cheese!  My favorite!