Hello friends! I can't believe this week is almost over, I actually feel like Monday was about a month ago! Here are our highlights:
Monday - before Evie's injection we had a great meeting with the PT, OT, and teacher from OPS. They thought Evie was a doll and had some great advice for me on how to work with her, and Lyla was in the middle of the action at all times. We have our next appointment on Feb 18th, and then I will get all of the paperwork about her present level of functioning, and where we should be.
Wednesday - we had a chest x-ray, followed by a pulmonology appointment and then her injection at UNMC. Evie's pulmonologist thought she was doing much better than when we were hospitalized a few weeks ago, but still wanted to do a sleep study... so we went ahead and spent the night at Children's to get it out of the way. Results were fine, no changes for now - hooray!!! We also had a photo-journalist come along with us for the day, who took some amazing pictures I can't wait to share with you. I will get them posted when I'm sure it's okay with him (:
Friday - Injection... and Evie wasn't feeling so well, seemed like congestion was back with a vengeance...
AND today - decided to take Evie back to see her pediatrician, as her congestion is just awful, and she didn't get much sleep last night with coughing. AND for the bad news... she has RSV. Let me just precede this by saying our health insurance has denied all of Evie's claims since January 1st... including the RSV vaccine. So now we have a nebulizer, and cough-assist machine to add to our home machinery.
SO our main prayer requests would be the health of both girls. Evie has RSV, and Lyla's cough is probably RSV also. We are praying praying praying that we won't end up in the hospital. If Eve doesn't eat well, or her breathing gets worse, we will be taking her in. Secondly, we have been having a heck of a time dealing with insurance. I talk to them or get a letter at least everyday. Like I said, all of Evie's claims have been denied, including a 6 day hospital stay, so cooperation on their part would be a huge relief. We have our application in for Aged and Disabled Medicaid waiver, so if that goes through and Evie can get Medicaid I can't tell you what a huge relief that would be. I am not worried about the insurance issues... I know they will go through eventually... it's just so frustrating to have to deal with that when I should be enjoying time my kids.
In conclusion... you all know I have been thinking quite a bit lately about Evie's future... and God has been reminding me consistently about two important things that bring joy to my heart when dealing with her health.
#1. We have had four beautiful months with our daughter. Four months that we weren't "supposed" to have. I am thankful for each and every minute.
#2. It's not about this life friends! My beautiful baby girl is going to walk the streets of heaven with long straight legs, and strong healthy lungs. This life is but the blink of an eye compared with the glorious eternity we are looking forward to.
Love you friends, we won't be at church tomorrow so keep in touch this week! Bye for now (: