Friday, March 8, 2013

The Busiest Bruckner

He's a busy guy... ;)

Now... (1/19/12)
Then... (7/21/12)
So... it’s been a while! As per the usual story, life got busy!

I started my new job at INCCRRA in their Data and Research division. I’m doing research and program evaluation for the network that provides support to licensed child care providers statewide. Pretty much I get paid to be a nerd full-time. Right up my alley! Since I’m still in my “introductory period” at work, Ian is busy running Finnegan around to his various appointments while also working. He’s a busy, wonderful daddy...because Finn has had a LOT of appointments. The appointments usually yield positive results/outcomes, but needless to say, Finn’s calendar is always fuller than his parents’ calendars. I am really happy to say that we have not been in a hospital this year (knocking really hard on wood)!

He’s growing a lot faster than I think Ian and I are ready for. As of Tuesday, he is about 19 pounds and right around 27 inches long. He is now in the 10th percentile of height and 25th percentile of weight based on his actual age of about 10 months. He’s also made his way into 9 month clothes! He’s sporting an awfully cute pot belly, but it’s a welcomed addition to his absolute adorable-ness.
The stud on his 1st Valentine's.

He’s still doing new things every day and advancing physically and developmentally, but he’s still delayed. We knew this would happen, so it’s not a shock, but it is a little harder to see other babies sit up, crawl, stand, or pull themselves up at 6 or 8 months, when Finn is 10 months and still struggling with the concept of sitting up. It’s really hard. I try so hard to not make those comparisons because (I mean really) Finn is already a HUGE miracle, and we’re truly blessed to have such a healthy baby (considering). Often it’s just harder said than done, and I have to talk myself out of that negative circle of ickiness. It does make the little things he does new that much more exciting, though!

Watching his 1st Superbowl!
We learned at the end of February that Finnegan is not completely deaf in his left ear. In fact, after an Auditory Brainstem Response (ABR) hearing test it was determined that Finn has moderate to moderate-severe hearing loss, but that at a conversational level and in close proximity, Finnegan can hear out of both ears. In any other situation, Finn would struggle to hear clearly out of his left ear, whereas his right ear is perfectly normal. With this exciting news, the audiologist suggested we fit Finn for a hearing aid. With the hearing aid (which he will officially get next week) comes a new aural therapist who will help Finn learn how to better develop his listening skills (responding to sounds right now), using his hearing device, and then eventually better understand and using language. We will become a lot more familiar with the trip to and from Champaign, since that is where the hearing clinic is located. Since he’s still growing rather rapidly, he may have to get new molds for his aid every couple of months. We picked a pretty “ocean blue” and gray aid that will go behind his ear. The aid itself is SUPER small (a little bit bigger than an earbud for an iPod), but it will obviously still be noticeable.

Finn and Grandpa Doman... :)
Speaking of noticeable... since December-ish, we have been a bit concerned about Finn’s head shape. It is rather flat on his right side. When meeting with his neurosurgeon in January, we were told that his shunt will cause problems with any sort of treatment for his head shape (medically known as plagiocephaly). Specifically, his neurosurgeon said that he would have to wear the helmet about twice as long as child without a shunt, and even then there’s no saying what the outcome may be. At that point, he expressed that further “flatness” can be avoided by repositioning. He became more focused on his positioning at that point, only putting him on his back when he slept. We didn’t expect changes over night, but we still were a bit uneasy about the whole thing; however, I just thought we were doing what was best for Finn so we didn’t delay more developmental progress with a helmet that might make him angry or otherwise “revolt”.

This week, Finn had an appointment with his the nurse practitioner at his neurologist’s office as well as an appointment with the Regional Development Follow-Up Program (RDFP). The RDFP is a research program through the Children’s Hospital of Illinois that looks at the development of NICU grads over a course of time. One of his old NICU doctors came to check him out after a physical therapy evaluation and expressed how she thought we should go ahead with the helmet. The nurse practitioner at his neurologist’s office said the same thing. When I heard that on Tuesday, I was just disappointed, because up until then, I thought we were doing the right thing. They expressed that he will lead a more “normal” life in the future if we did something about his head shape (especially since hats, sports helmets, etc. all require a round head to fit properly). All we want is for Finn to live a “normal” life considering all the hardships he has gone through, so we jumped on the suggestion. We called the neurosurgeon’s office the next day and requested a referral. After speaking with someone at the insurance company (who had NO idea what I was talking about and was giving me a bunch of useless information) and then having to call them back to get more accurate information, we found out we will likely have to go to Peoria to have Finn’s head casted and the helmet produced. The neurosurgeon’s office was great about getting all of this together quickly because we know our window of opportunity for this to have an effect on Finn’s head is closing. Yesterday we got a call from the Peoria office and he will be "evaluated" next Wednesday. We hope to have him all settled and weaning him into the helmet by the end of the month.
The dogs enjoy their new house... just like we do! :)
At the RDFP appointment, we also found out that Finnegan is at the developmental level of a 5 month old. They said that given his almost 3.5 month prematurity and about 1 month of meningitis that is about where they would expect him to be. That was still hard to swallow, but the fact that he’s developing at a “normal” rate after these delays is a blessing. Who am I kidding...everything about Finnegan is a blessing. :)

Here are some firsts for Finn:
1st time matching his Daddy!
First time with a sippy cup.... AND apple juice!

First time eating on his own!

First time getting food stuck on his face... 

First time waking up from a nap and refusing to let go of a blankey

First naked baby diaper picture!

Otherwise, enjoy this general adorableness! :)