Saturday, July 30, 2016

She lost a tooth!


I'm proud to announce that Allie lost her first tooth!  It's been loose for about a week.  Allie was so brave.  She was nervous about losing it but let me pull it out. 

She's looking forward to seeing what the tooth fairy will bring her but the idea of a fairy creeping into her room was too much.  She found an acceptable spot in the hallway for the exchange.

Thursday, July 28, 2016

Endocrinology Results

Allie got her endocrinology blood work and bone age results back and everything looks great!  The doctor said there is no reason for Allie to be followed and we don't need to do anything else.  Hooray!


This week has been much calmer than last week.  Allie had a field trip on Monday to a local splash park.

 

Jonathan went out of town for work and the three of us have been enjoying a slightly modified schedule, including pajama selfie parties.


Allie's 24-hour EEG has been scheduled for next Friday.  She's coming up with lots of activities to keep us busy and lots of friends to invite to visit.  I think she thinks we're throwing a party.  I hope she's not too disappointed.
 

Thursday, July 21, 2016

EEG Results

We got a message from the neurologist yesterday saying that she had reviewed Allie's EEG and she wanted us to come in to her office to talk about the results.  She explained that the new EEG does not look any better than her May EEG and she wanted to talk about options.  We were in a hurry to hear what she had to say so Jonathan, Allie, and I went in this afternoon.

The neurologist spent the first 10 minutes of the appointment chatting with Allie and getting a feel for how she's doing.  She then asked Jonathan and me to go into a separate room to go over the EEG while Allie colored with the nurses.

She explained that Allie's EEG shows she's having focal electrographic seizures with no clinical correlation, which means that the left side of her brain looks like she's having a seizure based on the EEG but she shows no physical signs of having one.  The EEG was two hours of recording time and, unlike the May test, Allie was awake during a lot of it.  During this awake time, the neurologist counted 14 different 10-15 second long electrographic seizures.  While she was sleeping, she showed nearly continuous abnormal discharges.

She emphasized that she wants to treat the patient and not the EEG, and Allie is doing very well.  She proposed the following three options moving forward:
  • A 24-hour in-patient EEG to gather more data and engage Allie when she's having the electrographic seizures to see if they're limiting her ability to function,
  • A neuropsychology evaluation when she turns 6 years old to see if there are any areas she's struggling or falling behind, and 
  • An increased dose of her epilepsy medicine Trileptal.
Jonathan and I are on board with all of these, although I'm not looking forward to the 24-hour EEG after our last experience.

The neurologist noted that some people, especially those with strokes, have electrographic seizures their whole life and never show any physical indication of them.  Because Allie is doing so well, she doesn't want to try layering on new medications that could cause unintended side effects.  She also doesn't want to subject Allie to unnecessary interventions if the electrographic seizures aren't getting in her way.  So, we're going to gather some more information, watch her closely, and continue to hope for the best.

Wednesday, July 20, 2016

A busy week of doctors' visits

This week has been unexpectedly full of medical interventions. 

On Monday, I was dropping the kids off at their preschool and, when I gave Allie a hug goodbye, I noticed a very grown-up smell coming from Allie's armpits.  The girl had some body odor going on!  This alarmed me because one of Allie's neurologists mentioned a while back that kids with cerebral palsy can develop signs of puberty early and, if we noticed anything, we should see an endocrinologist right away.

I helped her wash up and called the pediatrician's office as soon as I left.  Her pediatrician is out of town but they got Allie in to see another pediatrician that afternoon.  That doctor immediately noticed the smell plus some little pimples on Allie's forehead.  I hadn't given the pimples much thought because it's summer time, she has sensitive skin, and we've been gooping sunblock on her every day. 

The doctor pulled up the calendar of their pediatric endocrinologist, who happened to be available right then, so she went to her office and brought her over.  It was one of the most seamless medical experiences we've had.  The endocrinologist examined Allie and explained that there are two different components of puberty: one caused by the pituitary gland and one caused by the adrenal gland.  The pituitary gland type of puberty is responsible for things like breast growth and menstruation, and is the type of early puberty that is common with cerebral palsy.  She said that the symptoms Allie is experiencing with the odor and acne is caused by the adrenal gland and is most likely unrelated to her stroke. 

Then the doctor asked if we use any shampoo or other personal care items with tea tree oil or lavender oil.  We do!  Jonathan and I use a tea tree oil shampoo and conditioner.  She suggested we stop using it right away because tea tree oil can simulate estrogen and cause the symptoms we're seeing in kids.  She also ordered some blood tests to check Allie's hormone levels to see if anything else might be going on, and also a wrist X-ray to evaluate her bone age to give an indication of her long-term hormone levels.

We haven't gotten the tests done yet because they have to be done at a particular time in the morning, but we'll do them this week.

For now, Allie is proudly wearing deodorant.  She asked if she can bring the deodorant to show-and-share to show all her friends.  I said she could if she really wanted to but it would kind of be like bringing her shampoo to show-and-share.  I think she's decided against it.

On Tuesday, we had a check up EEG scheduled to see if Allie's medication increase helped with her unusual brain waves that were seen last time.  She does not love the EEGs but did a good job of staying still while the technician set everything up.


We should get the EEG results sometime this week.  After the test was done, we got some ice cream...

... and headed home to wash her hair.

Allie and I then had the whole afternoon with just the two of us.  We went to a paint your own pottery place and spent over two hours painting things.  Allie made a turtle for her daddy, which she named Qurtle the Turtle.


Then today, we woke up to discover that Andrew has pink eye.  After a few quick questions with the advice nurse, they called in a prescription for eye drops.  At least we don't have to actually go into the doctor's office for this one.  He's home now, binge watching Minions.

Fingers crossed for good test results!

Monday, July 11, 2016

Andrew is TWO!


Our little boy celebrated his second birthday this weekend.  There are so many things that I adore about Andrew and these last two years have flown by.  I love how he cuddles with his head on my chest.  His unexpected kisses. His adorable cheeks. When he's feeling sassy and says "no kisses!" while simultaneously turning so I can kiss him.  He's always up for whatever we want to do and adores his sister more than anything.  We're lucky parents.

Jonathan's folks came into town to celebrate and help with the party.  Bonnie and Allie made over 6 dozen cupcakes.  They were delicious!



We had over 60 people come for the party and Andrew had a great time.  With his Papa's help, he ate his body weight in M&M's.  He'd get a couple, make the rounds, then start looking for Papa again to hook him up.  Here he is on one of his Papa-finding expeditions. 


During the party we mostly just chatted with friends while the kids ran wild.  

Then came time for the cupcakes.  He didn't cry this year when everyone started singing, which was a plus.

video



He got so many lovely gifts, including a ride-in truck.  He and his sister took a spin on Sunday.  He'd tell her where he wanted to go and she'd drive.  They're a great team. 


And once the drive was over, he took the truck back to work on it.  I don't even know where he found the screwdriver or what he was doing with it, but he spent a good half hour tuning everything up. 


Happy Birthday Andrew!