Our Little Princess is GROWING!

I took Lexi to Cleveland Clinic yesterday- it was my first time taking her to Cleveland by myself (I've done Columbus a few times).  The wonderful thing about it is it means Lexi is making BIG improvements- no feedings required throughout the day AND she can play fairly well in the waiting rooms!  I have to admit we were BOTH exhausted by the time we go home, but we did manage quite well!

Lexi saw GI and she is a WHOPPING 32lbs!!  It may seem small for almost 4, but our goal was 30 pounds! She went above and beyond that!  We have been having SIGNIFICANT issues with Lexi's night time feeds.  She pulls on her feeding tube, which makes the pump beep, which means mommy or daddy come running, which means Lexi gets some interaction! (She's a smart little girl!!).  She is also still  in a crib and she is really getting too big (at 3ft, 3 inches) to be in a baby crib, but we simply aren't able to keep her hooked up to a feeding pump and allow her free roam- her tube would be pulled out every night I'm sure!  Two nights ago, her pump was beeping at 3am (which is common for the pump to beep multiple times as it gets pulled and twisted)... but this time it was wrapped around her neck.....TWICE! So, long story short... since Lexi has gained some weight, the GI Doctor was comfortable allowing us to take her off her night time feeds!! WOOHOO! We will need to get 24 oz of pediasure in her either via drinking it or a few bolace feeds (dumping a small amount of formula into her feeding tube all at once) during the day. BUT, we'll take it! Our hope is that within the next few months, we can do away with ANY feeds!! THAT would be a pure miracle considering we were told she may never walk or talk- let alone be OFF a feeding tube (but we won't get our hopes up quite yet!).  For now, we are just thrilled to not have to spend 15 minutes at bed time prepping her night time feeds!!

We also neurology and they are thrilled with her progress and the fact that she has only had 1 seizure since starting her medication.  The doctors would like to coordinate a day of testing for Lexi within the next month or so- the neurologist is concerned that Lexi may have more than just cranial nerve damage- he is concerned other nerves in her body were affected by her surgery (hence her incredible instability!).  So, they plan to do a full body nerve conduction study (EMG), a cardio MRI and remove her adenoids and tonsils to help with her sleep apnea.  This will take quite a bit of planning as she will need to be transported to 3 different departments of Cleveland Clinic while under sedation.  The ENT, Neurology and Cardiology departments will coordinate and schedule it all for us (YES- I LOVE Cleveland Clinic!).

We know Lexi is extremely delayed and anything but a "typical" 3 1/2 year old. BUT, for us, what is important is that she is making PROGRESS!  She is moving forward daily and we are amazed at the things she is able to do. I dropped her off at Blanchard Valley School on Thursday and she said "This is so much fun!" (which is what I tell her every time I drop her off because she usually cries).  She is a joy to be around and we are learning to take EVERY milestone (big and small)!

On a side note:  I (Cherie- Lexi's mom) was finally approved with our insurance company to see a brain tumor specialists at the Taussig Brain Tumor Center at Cleveland Clinic, which is another huge blessing!  (If you missed it- I was diagnosed with a small brain tumor between my carotid artery and my optic nerve in May). I'm working on finding the right specialists there and setting up an appointment for the initial consult, followed by Cleveland Clinic running their own testing. And yes- keeping up with both me and Lexi's medical expenses and appointments is definitely becoming more a full-time job than it was before! :-)

Please pray for:
Upcoming appointments for Lexi on October 8th with ENT and cardiology to work out all the testing.

For Lexi to gain tons and tons of weight so we can move her completely off a feeding tube and only to pureed foods

For the process of my brain tumor- pray that I am led to the right doctor!

Thanks again for your prayers- we are thrilled with Lexi's progress!