A Turn of Events

I wanted to post for those of you that read-up on Lexi and our family. We have had a small turn of events over the past weekend:
Lexi woke up early (4am) on Mother's Day and sounded like she was choking, she then started gagging and vomiting.  We spent about an hour with her and she finally fell back to sleep.  Jon let me sleep in on Mother's Day (because he's wonderful) so he got Lexi up.  When he went to get her up, he found her staring blankly at the wall, making gagging sounds and flapping her arms around.  He said he had never seen her act this way before.  He picked her up and she was completely stiff. So, he laid her on the floor until she "snapped out of it."  He then took her downstairs and came up to get me (with a cinnamon roll and juice for Mother's Day) :-)  By the time I got downstairs, Lexi was unable to move her left arm and was very lethargic.  So, I got dressed and rushed her to the ER (Happy Mother's Day right?? She also was EXTREMELY ill and almost hospitalized on my birthday! Someone please give this child the memo that this is no way to treat Mommy!) :-)

At the ER, the doctors were very concerned about her lack of response.  They did Xrays of her chest and abdomen and arm (they were worried she might have ingested something). They did blood work and a urinalysis. They did a CT scan (they were worried she had a stroke). They put in an IV because she was dehydrated. Lexi slept through ALL of that! The tests showed some elevated white blood cells and her electolytes were very off.  But, after more questions and evaluations, they admitted her and did and EEG early (like 6:30am early!) the next morning. 

We (Jon and I and the doctors) are pretty sure Lexi had a seizure.  She exhibited a lot of signs including a numb limb and extremely lethargic.  So, they called Lexi's neurologist at Cleveland Clinic and he double-booked himself to see her Friday (today).  Her neurologist literally schedules 4-6 months out so we were blessed that he got us in! We personally took him a copy of Lexi's actual EEG read-out (thanks to our wonderful hospital peds who had the EEG techs get us a disc before we even left the hospital!!).  The Cleveland Clinic neurologist is going to read the EEG and has scheduled and MRI for Lexi at the beginning of June (oh goody- MORE TESTS! And yes- I'm being saracastic).  Dr. Friedman (the neurologist) said that because of "whatever happened to Lexi's brain during her heart surgery" she is at an increase risk for developing seizures and went over with us what to look for and what to do if she has one again (we are PRAYING she doesn't). We will wait and see what her MRI shows and what Dr. Friedman sees on her EEG before moving forward.

This is very discouraging us.  Dr. Friedman told us that his seizure treatment program is a two-year process! Our poor sweet baby just can't catch a break! If Lexi goes 6 months without another "episode" and if the EEG and MRI show nothing of concern, we should be in the clear.... but that seems like a lot of "if"s to us.  Please pray that this was a one-time event and we will not have to add more to our sweet little girls plate!

On another note- I (Cherie- Lexi's mom) was recently diagnosed with a microadenoma of the pituitary gland. Basically, I have a small tumor just above my pituitary gland on my brain.  I have had 2 MRI/MRAs and was supposed to see a neurosurgeon today to discuss my options......until this all happened with Lexi. She most definitely comes first. So, my appointment was rescheduled for June 26th.  I get debilitating headaches some days and the medication I'm on makes it very hard to focus.  Please pray for some relief while I wait for my appointment and that I can be treated with medication and not surgery.

So, to some up the past month (when it rains it poors- but we believe that "blessings can come from raindrops" too!):
Please pray for proper diagnosis for Lexi in the next week:
1-Pray for her MRI- we wont know the exact date till next week because they will also do a heart MRI, MRA and remove her adnoids and tonsils while she is sedated for her brain MRI!! That involves 5 departments at Cleveland Clinic- Lexi is a rock star there!! :-)
2-Pray for my headaches and some relief from my tumor while I wait for my new appointment.
3-Pray for our budgeting skills.  I have literally received over 30 bills this MONTH- please pray for patience and understanding from the multiple hospitals and doctors we are trying to work with between me and Lexi's bills and that I find time to manage it all- the medical bills alone are a part-time job!!

Despite all of this, we are so thrilled with Lexi's progress.  When Jon came to get us from the hospital on Monday, she toddled down the hall and said, "Hi Daddy! I missed you!"  For a little girl the doctors told us might never walk or be able to talk- We'll TAKE IT!!! :-)

Thank you all for your continued prayers- it really is what helps get us through these tougher times. The love and support of friends (and those we really don't even know that well!) is one of our greatest blessings!