December 28th- Holiday Whirlwind!

Well, Merry Belated Christmas! I did not realize how long it's been since we have posted about Lexi. My apologies! Life just gets in the way! :-) I'll try to keep this as brief as possible and PROMISE to do a better job updating this coming year. Plus, I took a self-prescribed break from Cleveland Clinic for November and December so we didn't have as much to report. Lexi had doctors that had asked to see her, but since nothing was life-threatening, I decided that mommy and Lexi needed a break from trips more than the doctors needed to see her! And yes- there IS still such a thing as taking control of your own (or your child's) medical decisions! Hooray! We REALLY REALLY enjoyed the break!

Here's the updates:
Lexi turned 2 on October 28th and celebrated with..... a doctors appointment of course!! She has finally gained weight and is up to almost 22 pounds! Still a peanut for 2 years old but we'll take it! I'm adding some new pictures to the site this week so be sure to check back for some cute birthday photos and Christmas photos. Unfortunately, we spent Thanksgiving day in the hospital with Lexi. She woke up Thanksgiving morning throwing up and had a low-grade temp. We weren't overly concerned until she refused to put any weight on her legs. She literally laid on the floor and cried for over 2 hours! With Lexi's brainstem herniation, odd behaviors like this really scare us! We paged the hospital pediatrician and he called us immediately and asked us to take her to the ER. So, we spent 4 hours in the ER. We felt terrible as Dr. Hannawalt decided to run a bunch of tests so they had to call in the X-ray techs, MRI techs and ultrasound techs on Thanksgiving! After all this, it turns out Lexi had something called "transient synovitis." Basically, she developed a viral infection that went to her hip joints. However, we're happy to report that this is probably the biggest "set-back" she's had in the last 3 months! If that's it, we'll take spending Thanksgiving Day in the Findlay hospital! Here's her other updates:

PT/OT- Lexi is crawling EVERYWHERE! We are trying really hard to be grateful, but she is in to everything and has absolutely no fear! She loves water....any kind of water.... especially......toilet water! We need someone to develop automatic toilet seats that close when little girls are done with them! Lexi also took TEN steps 2 weeks ago when the PT was working with her. Hooray! She's a long way from walking independently, but the fact that she can take a few steps means she WILL walk eventually and that's what keeps up motivated!

Speech- Lexi is our little parrot- she repeats everything we say. Unfortunately, she still isn't able to say and "m's," "b's" or "p's." If you think about it, this is such a vital part of our language. So, it's really hard to make out many words. Lexi calls me "nana" my mom "no no" (for momo), and my dad "tata" (for papa). We completed yet another round of vital stim therapy in October with a wonderful speech therapist that came to our house but we have not seen a ton of improvement! We are going to attempt yet another round of vital stim in February. However, adding 3 appointment a week to our 5 appointments already makes it really difficult to manage!

Feeding- Lexi has made a few small improvements in eating. Someone gave us a Magic Bullet and this has been a HUGE help in trying new foods with Lexi. We also got a great deal on a travel-size hand mixer so we are able to take it with us and puree anything she eats. It is difficult, however, for the past 2 years to specially prepare all of Lexi's food and then feed it to her. Those of you that are newer parents- you may remember the sigh of relief when your child started feeding themselves and you could actually enjoy a meal! We are still not to that point (you'd think I'd be 100 pounds too after all the running around I do during meals! ha!) We are hopeful that Lexi will pick up the whole idea of eating AND chewing sooner than later! This is probably the most daunting task of caring for her. We hate her feeding bag as it beeps many times at night, gets caught on toys, etc and we are constantly running after her when she's on a feed because she's so mobile but not big enough to hold the feeding bag on her back yet.

Specific Prayer Requests:
We go to Cleveland Clinic January 6th, 10th and 25th (AND we are taking a MUCH needed vacation in the middle of those appointments!). Pray that the appointments go well and that the doctors see big improvements with Lexi. We see ENT, GI, Feeding Clinic and Opthomology in January. In February, we will see the cardiologist and neurologist. At this time, they will schedule an MRI for Lexi's heart and brain to check her progress and determine if brain and/or additional heart surgery is needed. We are praying ALREADY that we can once again post-pone more surgeries!

As always, pray for strength, endurance and patience for Jon and I. It is exhausting to keep up with all of Lexi's appointments and medical needs and I have greatly enjoyed the past 6 weeks off! Pray that I have a good attitude heading into the New Year (and crazy schedule again) and that we can manage our time wisely to accommodate everything Lexi Mae needs!

Finally, Jon is taking 5 college classes (15 hours) to finish up his degree in Business Management from Liberty University and I must take 6 additional hours of master classes to keep my teaching license renewed. I honestly don't know how we are going to manage all of this before June!! We need LOTS of prayers that our hours are spent wisely and that we can still find time to be with the girls and work with Lexi on her therapies while doing studies as well!

Thank you all for your continued support! We have had many unexpected gifts this Christmas season. It means so much to our family that so many realize that Lexi is making HUGE progress but still has a lot of obstacles a head of her. We covet your prayers! I promise to make a better effort at updating her blog- we will definitely do so after her 1st round of appointments on January 1oth!

Praying for a blessed New Year for all of you!