June 27, 2012

Try, Try, Again

This past Monday, Ashlyn was scheduled for a post op MRI (her 3rd MRI), and usually, the hardest part is denying her food and drink prior to the scan.

This time was no different.  We tried our best to distract Ashlyn and not talk about food or even let her see sippy cup.  Right away, the nurses and doctors were aware of Ashlyn's anxiety and gave her some meds to help calm her.  It worked wonders and she was very relaxed and didn't even squirm when they placed her IV.  Yay!

This time around, the doctor wanted to try a sedation medication called Dex (if I remember correctly) because last time, she woke up right at the end of the scan and they wanted to make sure that she stayed asleep this time.  This type of sedation could be administered by IV and they could keep giving her the meds throughout the scan.

Well, Ashlyn got all set up for the scan and in less than 2 minutes, she woke up.  They had to stop the scan.  I consoled Ashlyn.  They increased her sedation medication.

Ashlyn fell back asleep and they started the scan again.  In less than 2 minutes all the doctors and nurses came back in because Ashlyn's oxygen levels were dropping to 83%.  They stopped the sedation, gave Ashlyn an IV to flush the meds, and put her on oxygen.  The doctor felt that she was stable with the help of oxygen and we could try the scan again even though they stopped the sedation meds.  Well, that didn't work.  Ashlyn woke up in less than a minute.

No luck.  (And of course Ashlyn slept like a rock for FIVE hours after that).

I am bummed.  I was looking forward to this appointment so we could compare before and after MRI's and talk to Dr. Fuchs about concerns regarding Ashlyn.  Not only that, but I'm sad that Ashlyn had to go though all that for nothing.  Now we need to repeat the process.  Ugh.

We did meet with the neurosurgeon but he couldn't say much because he didn't have the MRI to look at.  Darn.  We are hoping to schedule another MRI closer to home and then have a phone conversation with Dr. Fuchs.

So, we didn't get any answers.  It was a long trip for nothing, but I guess that is how it goes sometimes. Ashlyn is our little fighter and she fought her way through the MRI.  She is our 18 pound Heavy Weight Champion that just won't quit.

June 24, 2012

Follow Up Appointments

Off to Duke Children's Hospital again.

Ashlyn has a follow up MRI on Monday morning and we meet with the neurosurgeon in the afternoon.

HOPEful for good news....

June 23, 2012

Fussy, Fussy

For the past few weeks, Ashlyn's fussiness returned, just like before her decompression surgery.  Sometimes I feel like we have a colicky baby.

Usually, Ashlyn cries the most when she wakes up in the morning and when she wakes up from her nap.  She will scream and cry for 1-2 hours and nothing will help.  Sometimes she will cry from the time she wakes up from her nap until the time she goes to bed at night. She doesn't want to eat, drink, play, sing, etc.  I will hold her and cuddle her but she still cries so I will set her down and she still cries.  It is frustrating, for all of us.  

I'm not sure if this is a side effect of Chiari or her just not being a morning person.

I'm glad Ashlyn has an appointment with the neurosurgeon in a few days.

June 22, 2012

Chiari Malformation Image

This is a great graphic of Chiari Malformation if anyone is looking for a way to show others what Chiari looks like

June 19, 2012

Happy 2nd Birthday Ashlyn!!

Ashlyn definitely deserves to celebrate!  

Hard to think that this time last year, or even this time two years ago, we had no idea what Chiari Malformation even was.  Now, this word "Chiari" is in our vocabulary every day.  Ashlyn will forever be changed but it seems as she turns TWO, she is already determined not to let this stop her!  

Ashlyn is brave.  She is strong.  She is a fighter.  She is full of HOPE!

Happy Birthday sweet baby girl!  Don't ever stop fighting!

June 16, 2012

Eye Surgery

Ashlyn went to the eye doctor yesterday and we discussed her strabismus (eye crossing) and problems with depth perception.  Ashlyn was referred to an eye doctor when she was 4 months old because her left eye was crossing a little.  Since then, we have tried patching Ashlyn's eye and also eye drops but her eye still turns in at random times.

We noticed problems with Ashlyn's depth perception a few months ago when she started sitting down to step over cracks and ducking through doorways.  We aren't sure if this contributes to Ashlyn's coordination, but my guess is that it would be difficult to walk without a good sense depth perception.

Ashlyn's eye doctor feels that she needs eye surgery.  Obviously the hope is that this will help both the strabismus and her depth perception.  The surgery will be about an hour and a half long and the doctor will perform surgery on both eyes.  At this time, we have not set a date for the procedure, but we will probably wait a few months.

June 11, 2012

Side Effects of Chiari?

Ashlyn didn't have the best day today.  She has been falling more and more often, and today it seemed like she was on the floor more than she was standing.

She has also been choking more and more.  She doesn't choke so badly that she needs the heimlich, but it seems like she is back to choking on liquids and solids again.

The amount that Ashlyn has been falling and choking seems like the same amount since before her surgery.  I'm trying to stay optimistic (and maybe her coordination is due to her depth perception).  Obviously, the hope in the long run, is that the surgery will help prevent pain and headaches.  I am just glad that we go back to see the neurosurgeon in a few weeks.

June 10, 2012

A Few Updates

Ashlyn had a weight check last week and she hasn't gained an OUNCE in over 3 months.  She is almost 2 and weighs 18.4.

Her iron was also a little low.

She has an appointment this week with her eye doctor to look at her strabismus (eye crossing) again and also possible problems with her depth perception.  We have noticed, along with Ashlyn's physcial therapist, that Ashlyn might have some issues with her depth perception.  This could attribute to her lack of coordination as well.  I'm interested to see what the doctor has to say.

Ashlyn was going to physical therapy once a week and now since she is doing so well, we are going to try going to therapy once a month!

Ashlyn is very active and quite the talker!  She learns new words each day!