Ais Update 6/10

Today was a great day for Aislinn. I think she is surprising everyone with her recovery. There were quite a few people who checked in on her today who haven't seen her since Friday and they all thought she looked completely different. Praise God! Maybe that means we really will get out of here by the end of the week! I can't believe it has already been 2 weeks. It's June 10th, we're in the double digits already! It was May when we got here...

Look at those eyes. I love seeing them so big and bright again. Beautiful.

The highlight of the day was definitely Aislinn eating solid foods. We decided to just give it a shot and she did amazing! We were all quite surprised. She was enthusiastic about the sippy cup of milk and wanted to hold her own spoon to eat. At this point the nutrition and eating is the last component keeping us here at the hospital. It's kind of annoying after all that we've been through, but she's underweight and we all want to be sure we have a handle on her diet before we go home. Most likely the feeding tube will be going home with us to ensure she gets enough calories. At this point she cannot sit up or stay focused long enough to consume enough calories by mouth.

The low point of Aislinn's day was probably getting a new feeding tube since she somehow managed to pull the first one out. She's pretty sneaky like that.

For me, today was difficult, but in different ways than the past couple of weeks. It was almost like having a newborn again. Being tethered to one spot, snuggling and singing to your babe, but not moving out of fear of disrupting your sleeping beauty, not showering or eating all day because as soon as you put her down she cries, not sleeping all night because your ears and brain wont stop working...of course all of these things are actually quite amazing and I would take a million of these days over just one of the days from the last two weeks. (and luckily my aunt came up for reinforcements so I could have a break!)

Ronan had a great day, first playing with his cousin here in the unit we're in and then having a playdate with his buddies Jax and Jude.

Praises for Today

-great improvements in Aislinn's fine and gross motor skills

-great success in feeding her solids!

-Aislinn's lungs are looking great! We have been able to change her treatments from every 4 hours to just as needed (and she hasn't needed one all day!)

-GREAT playtime and social interactions with Aislinn. She really seems to be back to her normal self :)

Prayers

-we are SO ready to be home. Now that she is out of PICU and obviously doing well, my thoughts have shifted from concern and worry to wanting to be outside, playing together, being home as a family. We need her diet portion to be figured out and we need any other loose ends tied up (I don't think there are many, we just need everyone on the same page). Pray we get cleared to go home in the next few days!

-please continue to keep Ronan in your prayers