Saturday, January 31st

We are sorry that it has been so long since we have blogged. We appreciate so many of you asking how Lexi is doing. Our life has been unbearably hectic. Between multiple therapists and 2-3 doctors apts a week, we struggle to keep our heads above water (or should I say above all the snow)! The twins are also at a very difficult age and throw many fits a day and must always have mommy in sight! In addition, the bills are literally PILING up and we must make multiple phone calls a day to manage Lexi's schedule and bills! "Busy" isn't even the word to describe our lives right now!

As far as Lexi is concerned, here are her most recent events:
Cardiology- The Dr. did not see any further narrowing and has moved her appointments to every 3 weeks, which will help a great deal. He is also putting Lexi on RSV injections (Synergis) to help keep her lungs clear and healthy this RSV season! However, this has been quite a process as these injections are EXTREMELY expensive (over $1,200 a month!) and hard to come by. Once we have Lexi on these shots, we will hopefully be able to take her out in public a bit more. The walls are quickly closing in on us!:-)

Neonatalist-Lexi is battling the flu bug and has been running a very high temp this past week. We have been to the ER and to see the neonatalists and after several X-rays and tests, the are sure it is just a bug. They have also found that she has a corneal abrasion on her right eye. Since she does not have a corneal reflex right now, she is not able to protect her eyes and is highly prone to infections and abrasions. We will be keeping ointments on it until it heals.

GI- we had an apt. with the GI doctor on Friday in Columbus. Her tube is healing well and she should be able to move to a button (a flat tube instead of this 8 inch one she currently has) in March. The doctor put her on a few new medications to help with her acid reflux and gas. Hopefully this will help her fussiness!

Neurology-The neurologist from Cleveland Clinic also found that Lexi has fairly elevated TSH levels. We will now be adding an endocrinologist to the list of specialist to look at putting Lexi on thyroid replacement therapy!

Therapist- Lexi's therapist were not able to come last week due to an insurance "glitch" but will start back up this next week. She continues to be very fussy but we have seen some signs of improvement. She sat in her bouncy seat for 10 minutes today without crying! This is a HUGE improvement for her! She is also sleeping in her OWN bassinet about 5 hours each night. The therapists are giving us some new ideas to help Lexi soothe. Hopefully these will help!

Finally, we want to thank EVERYONE who came to support us at the benefit last weekend. The efforts of our friends and family really paid off as we sold 800 meals! Parkview Church will be presenting us with a check on February 8th during the AM service. You are, of course, welcome to attend as we hope to bring Lexi to her first church service that day as well! We were overwhelmed with the turn-out! We cannot express how much it meant to us. More than any amount of money the benefit brings, Jon and I especially needed a boost like this to show us how much we (and little Lexi of course) are loved and supported. So, from our entire family- THANK YOU!

After this lengthy blog, I promise to try to do better at updating this every weekend! Lexi has a very long road to recovery. She is no longer on the height and weight chart and is very behind developmentally. This is going to be a very long and trying process for our entire family and we appreciate your continued prayers and support!

Prayer Requests:
Pray for our family right now as we struggle to get both Lexi and the twins on some sort of a routine. I literally try to survive each day, especially with my parents in Florida for 2 weeks and my sister Holly becoming more and more pregnant! It is very difficult to manage all 3 kids at the same time and this makes for very long and frustrating days. Pray for strength and patience!

Pray for Lexi's fussiness and that she will be able to get her RSV shots started soon! We would really like to bring her to church on the 8th!