12/31/14 - Happy Holidays

Christmas for me growing up meant traveling to see family. I spent 20+ Christmas mornings with my grandparents in PA. When Terry and I got married the tradition of traveling changed to us enjoying the whirlwind of Waterloo with dozens of family members. Last Christmas Leo was in the NICU so Christmas night was spent in Peoria. This year we were blessed to have the little guy home for Christmas (even though he tried to get admitted last week), but Christmas Eve didn't feel like Christmas....we weren't going anywhere, we worked...it was a regular day. Just when I started to accept the new Christmas reality...things slowly perked up as family and friends trickled in and brought Christmas cheer to us :). Sammie was thrilled to spend 4 nights with "the boys" and 2 more nights with cousin Hailey. She had a great Christmas.

Leo made my holiday extra special by handing out lots of smiles. He has been really interactive the past week. He has been enjoying checking out his slinky and lots of new visual stim gifts he received for Christmas. Leo still has a cold and is still on the vent 24/7. He is supposed to be getting a new neb treatment, called TOBI, to fight off this bug. It is really expensive and insurance finally just approved it over a week after it was submitted. It is now scheduled to arrive Saturday. Hopefully it works and Leo can get back to being himself.

On both Monday and Tuesday we headed to Champaign hoping to get an ABR to determine if Leo has a chance of hearing. It was a revisit from 6 weeks ago when his ears had fluid. Unfortunately, on Monday Leo's ears still appeared to be filled with fluid, but the doctor was not in the office to know for sure. On Tuesday we headed back and doctor Porter confirmed Leo's ears do not look good. He said the ear drum should look like saran wrap and Leo's looked like wax paper. He thought the fluid and the build up was from a severe past infection and the fluid couldn't drain from his ears. We are feeling awful because we never knew Leo had an ear infection. Back in September when we first saw Dr. Porter he said his ears looked healthy and there was no sign of infection. He has had several ear checks since and no one ever found infection. Dr Porter said his ear canals are really narrow and probably hard to evaluate by someone other than an expert. Even he had to get out a super power magnifier and ear wax sucker before he could get a good look. Dr. Porter is now recommending tubes. This will drain the fluid and help prevent future build up. While he is already sedated for the tubes, he will also have another ABR to evaluate his hearing. This is scheduled for 2/12.

Leo finally got a hair cut! He has been looking straggely for months now, but I just wasn't sure how to get the job done. With his health issues and dislike of leaving home, I was scared to take him to a salon and I didn't want to butcher it myself. The perfect solution arrived on Saturday. Terry's cousin Jess is a stylist and she cut Leo's hair and all 3 nephews. When he hasn't rubbed his hair on the pillow all day he looks super cute!

Tonight is New Years Eve and I stayed home with Leo. We are celebrating the 1 year anniversary of him coming home from the NICU. It was a scary experience to bring this little guy home 12/31/13...if we only knew then what 2014 would bring. We are praying for new milestones, hearing, seeing and smiling in the new year.`