Monday, March 15, 2010

medium Friday, big Friday...

Hi Friends!

Sorry it's been almost a week, I am getting lazy!!!


We had a good end to last week, Evie had a pulmonology appointment on Thursday and she is back to her weight of 10.2 pounds! I knew she would be back up there, but it was great to get the affirmation that she is "officially" gaining weight. I don't even want to know what a normal 6 month old kid weighs... I am just going to be thankful for weight gain (:


We have two important Fridays this month... last Friday (medium Friday) Evie had a repeat EEG to double check her brain-activity since we put her back on B6 and she again didn't have any seizures! There is always that thought in the back of my mind that something might be wrong, but that wasn't the case (:


Big Friday is this Friday, Evie is finally having an MRI. Her neurologist has wanted to do it since January, but she has either been sick or hospitalized since that recommendation. We are finally doing it because her soft spot is bulging more than ever, and with the recurrence of seizures it is important. She has a little nasal congestion, but her pulmonologist recommended a laryngeal mask, which (from what I understand) means she will be intubated with a less-invasive tube that has a cuff to keep it in place. I think this will eliminate the risk that she will stop breathing like she did in January during her upper GI, but nonetheless leaves me pretty nervous. We haven't had great luck with tests and sedation, but it is so necessary.


The second reason that the MRI is a big deal is that doctors seem to have conflicting views over whether or not seizures cause brain damage. Evie never stopped breathing for more than a few seconds, which is good, but at some points she was having up to 6 seizures an hour.


We have an appointment with anesthesia tomorrow to discuss how things will go on big Friday. Please pray that John and I will make good decisions (if there are any to be made) and that God will give us understanding and peace about the MRI.


I have a few more prayer requests:

1. That Evie's congestion will clear up and she won't end up with a cold/sinus infection

2. That she won't have any breathing problems during the MRI

2. That she won't have any trouble coming off the ventilator after the MRI

3. That the anesthesiologist and team will let me go with Evie into her MRI

4. That the MRI will give the neurologist a clear picture of her brain and any problem areas that may be there

5. That there are solutions to any problems that are seen.


LOVE YOU FRIENDS! Thanks for checking in and loving us.

in the waiting room... I actually just wanted to show off how good Lyla is at the hospital, she is amazing!

ready for weight check!

the girls

for those of you who were wondering what Evie's "car bed" looked like

photos by Brian Lehmann


  1. We will be praying for the up coming MRI. We pray for you daily. I love all the photo's.

  2. Many prayers for you. Your posts make me tear up. So do those beautiful pictures. What a strong mother your little girls have. My 11 month old son has HPP but a mild form.

    Wish your little girl all the best.


  3. I have been praying and will be praying for you all: Evie and the doctors and staff and family. May alll the peace and love from the Great Physcian fill your hearts and minds.
    In His Love,
    (friend of Karen,who's a friend of Carrie's, in Calif)