Unremarkable

Posted on July 3, 2014 by Kristen Page

Most parents would be offended if someone called their child unremarkable, but I love that adjective! The girl’s MRI was unremarkable. No bleeding or obvious injury. We are very happy with those results. We are very happy that we get to go to South Dakota on Friday!

We spent the day at Lurie Children’s yesterday.

It was a very long day, but we did let the girl play with her leap pad (first time since the crash).

Donkey kept an eye on her to make sure she was ok.

The MRI schedule was an hour behind when we arrived and it was 3 hours behind by the time she went back.

We were finally on our way home by 8:00!

That long day was worth it! We now know that this unremarkable image…

(This actually her CT, not the MRI for anyone who can tell a difference)

…belongs to a pretty remarkable little girl!

26/52

Posted on June 30, 2014 by Kristen Page

A lot of healing has been happening this week!

Her face healed very quickly.
Monday:

Tuesday:

Wednesday :

Thursday:

Friday;

Saturday! All Better!

The crash

Posted on June 27, 2014 by Kristen Page

In our house, if you ride your bike or scooter without your helmet, the bike or scooter goes into time out for 24h. It’s only happened once, but the lesson was learned. Thank goodness, the girl will not ride without her helmet! Did you know that fewer than 25% of bicyclists wear helmets? Nine out of ten people killed in bike accidents were not wearing helmets (Helmets on Heads)? It seems logical that helmets should be worn, but perhaps the best way to learn the importance of wearing a helmet is to watch your child fly down a hill, lose control and land on her head. I can still see the crash in slow motion. She landed on her face. It was terrifying, but I was so thankful when she called for me just after impact. I know the story would be very different if she hadn’t taken that extra 30 seconds to strap on her helmet!

This is the hill that she decided to attempt on the scooter! She crashed right at the bottom (not my photograph).

This was the result:

So now she has a concussion and it’s not fun. I have read more student papers on concussions than I ever wanted to read, but I still feel like I don’t understand what’s happening at all! First of all, a concussion is not a bruised brain (like it was described when I was a kid). It’s a traumatic brain injury that changes the functioning of the brain (CDC, Lurie). Most concussions occur without loss of consciousness, and all of them are different. Many are accompanied by a headache, personality changes, problems with memory or concentration, issues with balance and light/noise sensitivities (CDC). The girl had a headache the first two days, but recently her most common complaint is dizziness. I can tell it’s bothering her. She doesn’t want to close her eyes to go to sleep because she feels like she’s falling. She’s also sensitive to light and forgets things.

The treatment for a concussion is “brain rest.” It’s easier to tell you what she can do, rather than list the things that aren’t allowed. The nurse told me that ideally the girl would lie on the couch all day with her eyes closed. Right! She is not allowed to look at any kind of screen (TV, computer, leap pad). She also can’t practice her cello, play the piano, run, jump, spin, ride her bike or scooter, climb trees, or swing. Our original plan (approved by her doctor) was to go to one hour of VBS and one hour of choir camp, but she hasn’t been able to do that much. Keeping her from thinking is the biggest challenge!

I have been reading to her. We are almost finished with book 5 of the Boxcar Children, and we’ve also enjoyed Mercy Watson and her children’s Bible. Yesterday we tried Play doh.

She just can’t play without a lot of thought! Check out this play doh bathroom:

A friend suggested that she cut paper and glue it together without thinking, and she would be surprised by the design. Look at what she came up with! I’m pretty sure she was “thinking” about this design and this fish and the campfire wasn’t simply a surprise.

We have enjoyed blowing bubbles, but it’s really hard to avoid chasing after them! (These photos were taken before the crash, but too fun not to use).

Today we just needed to get out of the house, so we played “Scavenger Hunt.” The girl picked things for me to find while we were out driving. We started with a new train station to the East.

Thankfully, we’ve never actually gotten on or off of the Metra in Lombard. Otherwise, I would have had to drive much further. The next instruction was for me to take her to an airport. We went to the DuPage County Airport rather than driving to Midway or O’Hare.

The last destination was a Target store. Thank goodness she was tired of the game after an hour and a half!

We see her neurosurgeon on Monday. Hopefully she will be doing better by then and we will just have good news! She really wants to be able to play with her new leap pad! That would be the best day ever!

Here’s to helmets! Never Ever Go Without!!!

Sources:

http://www.cdc.gov/concussion/sports/

http://www.helmetsonheads.org/facts/

https://www.luriechildrens.org/en-us/care-services/conditions-treatments/concussion/Pages/index.aspx

One year

Posted on May 8, 2013 by Kristen Page

One year makes all the difference! A year ago today the girl had her surgery at Lurie Children’s. We were starting two weeks of being flat! One year later, you would hardly know that there ever was a problem! In fact, we can’t keep her still if we want to!

Graduation

Posted on April 26, 2013 by Kristen Page

The girl has met her physical therapy goals!! She’s super fast and confident and ready for anything!!! We first met the girl’s PT in the fall of 2011 after the neurosurgeon said “she just walks funny, go get some PT”. The girl certainly had a distinctive way of walking!

Our friends called it the “zombie walk”. The girl worked hard in PT, but hit a plateau. Without Ms N, we never would have gotten the doctors to listen! We might have never met Dr. A (the new neurosurgeon)! We are very thankful that the girl was in such good hands. Look how far she’s come!
From this:

To this:

We can never thank her enough!!!! We have a lotta love for this amazing PT! Thanks Ms N!!!

The Inner Athlete

Posted on April 8, 2013 by Kristen Page

The girl has come so far over the past year! We are only two visits away from finishing PT! (We have very mixed emotions because we LOVE her physical therapist and we will miss her).

This weekend was finally beautiful and we spent a lot of time outside. The girl tried her hand at baseball. She was pretty good at it, and got several hits!

She also really surprised me on her bike! We just need to work on finding the brakes, but she’s a speed demon!

This girl is surprising me daily! Her inner athlete is really starting to shine and I’m so thankful!

Spring Break

Posted on March 15, 2013 by Kristen Page

The girl and her mommy are enjoying some spring weather and fun with family this week. We started with a visit to the neurosurgeon. He’s very happy with her progress and we don’t need to go back for a year! We will follow up with the urologist in June.

We made it to TX on Monday night and the girl has been enjoying her grandparents and cousin (aunt and uncle too) all week!

We are going to take advantage of the beautiful weather and have a picnic today! Can’t wait!

She’s Back!

Posted on January 3, 2013 by Kristen Page

What a difference pain control makes!!!
The girl ate 5 muffins!

Drank water!

Made a huge mess!!!

Tonight she’s playing with Amos!

I’m very relieved!
(Sorry the photo quality is poor…haven’t had time to use my real camera)

Goodbye to 2012

Posted on January 1, 2013 by Kristen Page

…and hopefully to hospitals! Unfortunately, we had to spend the last evening of the year in the ER getting rehydrated.
The waiting room was insane!!! The girl managed to make a new friend, though.

A couple more “pokies” and an IV were necessary.

This brave girl still found a smile for me!

Here is to good health in 2013!

Hoofbeats

Posted on November 17, 2012 by Kristen Page

I’ve heard that doctors are told that when they hear hoofbeats that they should look for horses instead of zebras. Look for the common, not the rare.

When a kid with a history of tethered cord starts falling and having trouble with weakness and incontinence, the obvious concern is that the cord is re-tethered. Re-tethering is pretty rare (~ 2% according to Ogiwara et al.), but we still couldn’t think horses when this rare possibility was stampeding towards us. We have just spent about a month testing everything that could be tested on the girl. Now we know that we are dealing with horses! We finally have some tentative answers, and there are no zebras involved…

The tentative answer is unexpected. The MRI of the spine showed some large adenoids (that had grown back after they were removed 2.5 years ago), large tonsils, and large lymph nodes. We visited the ENT yesterday and he said that the girls tonsils were almost as big as they get. He was concerned that she has sleep problems that could be on the verge of sleep apnea. She has lots of symptoms of sleep disordered breathing:

The most obvious is snoring…she sounds a lot like this:

The girl has never been one to sleep well, and we kept putting off the sleep studies that have been suggested over and over. She just has so many doctor visits, we didn’t want to subject her to any more. We never imagined that the problems sleeping could be serious…I mean, I’m seriously tired all the time, but for the girl, we didn’t realize it was that big of a problem.

It turns out that sleep apnea is a pretty serious problem. About 2% of the child population has sleep disordered breathing (American Academy of Otolaryngology), and this can lead to problems with behavior and learning, enuresis (bedwetting), slow growth, obesity, and cardiovascular issues (American Academy of Otolaryngology). Removing the tonsils and adenoids is the most common and effective treatment for sleep disordered breathing and obstructed sleep apnea.

We are optimistic that the tonsillectomy will help her sleep, and once she is actually resting she will be stronger and improve in all of the ways that she did immediately after the first surgery.