Ais Update 6/17

Yesterday, Monday, we had our first round of Aislinn's follow-up appointments. CT scan, neurosurgery follow-up, occupational therapy...busy day!

Up bright and early for our day! Ro got to play all morning with some of his favorite friends. 

I had time to kill between appointments and it was such a nice morning, so I grabbed a coffee and took Aislinn to the healing gardens at Sacred Heart (South of the ER). I had wanted to go there while Ais was in the hospital but never had the chance. It was such a beautiful morning and really a nice place to be. It reminded me a bit of the Japanese Gardens at Manito, a very scaled-back version.

so fascinated with my teeth lately

Sophie!!!

Aislinn's CT came back looking great. They cyst is actually smaller than before, which surprised me. We originally thought that the cyst would get smaller and smaller as the brain grows and the shunt releases the extra spinal fluid. Then we found out that the cyst is not intended to get much smaller than it is. This info from the Cedars-Sinai website kind of helps explain: "Since arachnoid cysts adhere to the structures that they touch, surgical options will often aim to relieve a patient’s symptoms by opening and draining fluid from the cyst. This method is often preferred over removing the entire cyst and risking injury to the brain." We're glad to hear that the cyst is actually a little smaller. It just makes me feel better regarding her brain growth and development.

Aislinn also got her stitches out and got the "ok" to sleep in a more reclined position (previously we had to keep her inclined more than 60 degrees 24/7...so hard and not very restful for the poor babe). She was SO happy when we put her down in her crib without all the pillows and blankets we had been using to prop her up. She slept 12 hours straight! We slept 8 hours! 

We had a long OT appointment, but it was kind of like playing so it was fun. :) I had to wake Ais up to play/be evaluated. She wasn't exactly in good humor by this and the fact that a stranger wanted to interact with her. But she warmed up and did great. I was happy, and not surprised, to hear that she scored above average in cognitive skills and fine motor. Also not surprised that she was just under average in her gross motor skills (crawling, walking) and language. She is picking things up like crazy lately so I think she'll be up to average in no time. It really is quite astounding that Aislinn's development has been so normal considering the amount of space that cyst occupies in her head. Her brain has compensated so well. The complex ways a brain develops and operates is so beyond me, but it reaffirms that our Creator is amazing. 

I'm going to resume my Praise/Prayer format for this post and thank you in advance for continuing on this prayer journey with us.

Praises

-praise God the shunt is fully engaged and operating well!

-we're SO thankful Aislinn can now sleep in a position most comfortable to her. She needs the best kind of rest she can get and so far, this seems to be working well

-no more methadone and valium!!! Monday was the final day for both and there is a clear difference in her behavior. She was doing so well on the minimal amounts of the drugs, but today she ate better, slept better and seemed even happier

-her brain development and skill set are amazingly normal. Praise the Lord

-we are getting back into our normal routine and everybody is happier for it. 

-Ronan is doing so much better now that we've been home a week and are back into some sort of routine. And after a good conversation he and I had tonight, he is much more secure about us being home for good. Major parenting fail: we assumed that since we're home all the time now, he isn't worried about us leaving. Wrong! He needed verbal recognition and reassurance that we don't have to go back to the hospital, that we'll always be here in the middle of the night and naptimes. Poor guy. He thought we were about to take off at an given moment.

-we continued to receive meals through today and have a fridge and freezer full of leftover. It has been a HUGE blessing to take this task off my list and know that my family will still have great meals. Thank you to everyone who blessed us in this way!!!

Prayer

-Aislinn will remain on the feeding tube until she can consume enough calories orally. She has not been very interested in all of her normal foods, except cheese, so I fear the feeding tube will be sticking around for awhile. However, today was better and we think it has to do with her being off of the withdrawal medications. Pray for an increased appetite and that Ais continues to progress enough that she can be off of the feeding tube within a month.