What a Difference a Month Makes

It has already been one month since we brought Aislinn home from the hospital! In some ways, I cannot believe how fast it has gone, but in other ways it seems like her hospital stay was a lifetime ago.

We have had a busy month, but so so good. The week was especially fantastic. Tonight I was feeling extra blessed and thankful for our two cuties. One can't just stay home and follow the normal routines when feeling this way, at least I can't, so I decided we needed to go on a little date.

Huge praises this week as Aislinn's progress is beyond all expectations. In the past few weeks we could comfortably tell people that she is doing "really well." Now I can say she is doing "great." After she pulled out her feeding tube Monday and has had great oral intake progress, we got the green light to do a 2 week trial off of the feeding tube! And even better, we can switch her over completely from Pediasure to whole milk! We just pray the trial goes well and that we don't have to put the tube back in in 2 weeks. Her appetite and desire for solids seems to be returning so we're very hopeful.

Her appointments with the Occupational Therapist and Physical Therapist were so fun and encouraging this week. They were thrilled with her progress and quite surprised that Aislinn is crawling already. We get to space out her appointments to once a month now! (that will make a huge difference in our schedule!) The main issue she is working on now is gross motor skills and essentially increasing her core strength so she will start standing/walking soon. The PT feels she will be exited from therapy sooner rather than later!

Aislinn is always putting something in her mouth these days. She's crawling across the room, though would rather someone help her out. She wants to stand more than sit and is so close to pulling her self up to standing position. Our house went through another good round of baby proofing this week! She's waving hello, goodbye; signing thank you, more and eat; tells us "na na na" when she wants to eat and has added "ook" (book) and a version of "good girl" (yes, she hears that a lot!) to her vocab. All the more reasons she will probably not be needing speech therapy!!! 

Also, she had a blood draw Wednesday and we found out that her cortisol and thyroid levels are normal so there is no adrenal deficiency!!! Praise the Lord!

See, it was a good week. So we went on a picnic. :) This spot under the weeping willow looks magical every time I'm at Manito and I'm so glad we were able to snag it for our picnic.

The ducks left us alone until they hear our crinkling packages. I looked up from the camera and they were swarming us. Creepy. Even worse was the turkey that even at 20 yards away was a little too close for comfort. Ultimately they all left us alone, thankfully.

I adore watching the two of them interact. At least the good interactions. :) Many times Ronan thinks Ais is hitting him when I know she is just trying to feel his hair (I think she's jealous!). Ro is already the overprotective brother/third parent and Ais will most definitely know how to push his buttons. But they also love each other very much and miss when the other is not around. Ais looks for Ro when she wakes up from her naps and is showing a lot of concern when he is crying. I love seeing this relationship develop, it's so cool!

Ro is less and less likely to cooperate for photos lately, unless it's a huge cheeseball grin. I got him gut rolling, but then all of the photos were blurry because he was laughing so hard! So there's just this one. Classic. Oh and I should add that the kid's got style. I went in for khakis and he insisted on the green pants. Sure, why not? I think they're pretty cool too. :)

A mobile baby is that much harder to capture. Let this be a note to my future self that food works wonders! ;)

on the move

every blanket goes straight to her lips

bye bye

And this is how we were all really feeling. This picture will always make me laugh.

Around Here

So it's been a couple weeks since we've said "hi." Oops. You know what that means though? Life has pretty much returned to normal. :) 

Aislinn is doing well. She is gaining weight well and so has been able to reduce the amount of pediasure she gets through the feeding tube (they cut out her overnight feedings). She needs to improve her oral food and liquid intake so we can get her completely off the feeding tube. The pediasure has certainly affected her palette, she is such a sweet tooth now! I really hope she can get back to normal feeding soon.

Last week's CT showed  a significant reduction in the size of her cyst. As in, it is now half the size it was before. This is not what we want and was pretty surprising to see. It seems that the shunt got programmed down by a magnet, which we try to avoid like the plague so I'm not sure when it happend (the shunt is controlled by magnets so we have to steer clear of them from now until forever...).  The adjusted programming caused too much drainage of the cyst. This allowed her brain tissue to separate off of the protective lining between the skull and the brain. There is a small ring of fluid now between the brain and the lining in a portion of her head. The doctor was not concerned and said that eventually her brain will grow into that space. Ooookaaay. Right? We are understandably concerned, but as long as Aislinn is doing well (no vomiting, lethargy, etc.) and our doctor is not concerned, we have to just trust that she is fine and move forward with each day.

If you don't mind, could you keep those two issues in your prayers? Thanks!

Our huge praises are that she getting so curious, wanting to explore, jabbering at us all the time and having lots of her own opinions.  These are the things she should be doing and we love it! Although I had forgotten how exhausting it is to be a human jungle gym every time I get on the floor. :)

Here is a collection of randomness (most photos are from my phone) over the past few weeks.

Kitty is glad to have his snuggle partner back. 

Ro spent a full 30 minutes (at least) coloring. This is unheard of and so wonderful! :)

We had a lot of color coordinating going on this particular day. :)

Celebrating my sister in law's graduation from nursing school with a day out on the lake.

ABC train puzzle. Ro was so proud of himself when we finished it. I was so proud of him for knowing over half of the letters!

Visiting with friends

Ais has gotten so curious. We love it. We brought out her basket of toys and she was in heaven.

Visiting dada at the office.

Sweetest sight. My guys fell asleep snuggling on our bed. Surprisingly Ro slept for 2 1/2 hours on our bed. He's been taking awesome naps lately.

Pimp My Ride toddler bike style.

Daddy of the Year candidate. :)

A little trip to the South Perry Farmer's Market.

Enjoying our market treasures.

He'll read a magazine as long as there is a boat in it. :)

Hanging outside.

Drumming with the birthday boy.

A HOT hot baby shower.

first drink out of a glass!

New (and first) bike helmet!

Crazy hot temperatures last week prompted us to get out the kiddie pool after dinner (it was too hot during the day!). I love how Aislinn so seriously took it all in. And also how huge Ronan is compared to the first time he used it!

seeing Ro jump in for the first time

Ais is safely out of the splash zone ;)

awesome running face

We just got back from a fantastic trip to Seattle for a wedding and a visit with family. It was a much-anticipated trip, we had a great time, and we are glad to be back home. Can't wait to share our photos with you, hopefully tomorrow. :)