Monday, April 1, 2013

Finn's First Lent/Easter

From the last post, I know most of you are expecting pictures of Finnegan with his new hearing aid...

Well... We don't have one yet. Finn was supposed to have his hearing aid fitted about two weeks ago, but his audiologist had pneumonia, so the appointment got postponed. The day after the cancellation, Finn had a followup appointment with his ENT to check on his laryngomalasia (the condition he has that is an immature piece of cartilage in the larynx that vibrates and makes him sound wheezy...that he will grow out of by the age of 2). The audiologst's office requested that since he was going to be seeing his ENT, to get a clearance from him saying that it would be okay for Finn to get the hearing aid in his left ear. Dr. Russell was very hesitant at first. He didn't seem to be very excited about the prospect of a 10 month old getting a hearing aid (which was contrary to most of the "experts" we have spoken to). I told Dr. Russell about the therapists we talked to, the audiologists, etc., and said that we want him to have an aid if it will in fact help him hear more clearly out of that ear. He didn't seem to agree, but at least he seemed to be respectful of our decision for our son. I really like Dr. Russell, so his persistence was a bit off-putting, but at least I was able to explain to him our wishes for our son.

After looking in his ears, the doctor ordered a pressure test. He explained that in this test, they simply put a puff a air in each ear and it will determine if there is fluid behind his eardrum and how much. An audiologist in the office took us down the hall to a quiet room to do the test. It took all of 30 seconds, and Finnegan just kept staring at her and trying to grab the cord that was dangling from her wrist. 

She brought us back to our room, where Finnegan decided to entertain all the nurses and patients by yelling... loudly. It was absolutely adorable, but man does he have a set of lungs on him! After waiting another five minutes or so in the room, Dr. Russell came back in with a big smile on his face. He said that Finnegan might not even need a hearing aid. The pressure test showed a significant amount of fluid behind his eardrums. This fluid could be putting pressure on his eardrum which is stopping it from vibrating at the correct frequencies. He suggested that Finnegan get in soon to have the fluid drained and tubes put in. He likely will only need one pair of tubes, but some babies (like his daddy) may need another set as they get bigger. He said he would have to take a look at his latest ABR hearing test results to be sure, but he thought that Finnegan might not need a hearing aid at all. 

Once we got the ABR results to Dr. Russell, one of his nurses called to say that he didn't think the tubes would correct his hearing 100%, but that it would help. The nurse said that he would want to wait to get another hearing test done, but Ian and I both agreed that as soon as he is finished healing from the tubes procedure, we wanted to have another ABR hearing test done. Our hope is that enough of a difference is made with the tubes procedure that there would be a need for a hearing aid at all, but we are prepared for either outcome. I'm also prepared to find another ENT if necessary, although I don't think it will come to that. He goes in tomorrow (April 2nd) to get the tubes in his ears. It's a very simple procedure. We have to be there at 6:15am, procedure at around 7:15, recovery by 7:30, and out by 8am. At least that's the plan! Lucky Ian will get the spend the day with Finn, while I get to spend the day at work!

More Finn Firsts!
First solid "real food": Pancakes!
First St. Patrick's Day!
First ride in a grocery store cart outside of his car seat!
First Curious George monkey!
First trip to Polka-Dots in Braidwood!
First walk of 2013!
First Easter Egg Hunt
First time meeting his new friend Nolan!
We had a great evening with the Gregory's!

Finn went in for a consult with the Hanger clinic in Peoria for a cranial othotic (helmet). We have to go to Peoria for the scans because the Normal clinic does not have the equipment there. He goes in again in tomorrow for another scan (it's called a STAR scan...they put a sock on his head and he sits in the middle of a bunch of machines and it takes about 3 seconds for them to get a clear picture of his head shape). This scan will be the "head shape/model" they will use to design his Hanger helmet. The specialist that met with Ian and Finnegan in Peoria will be the same specialist that Finnegan will work with at the Normal Hanger Clinic, so that was a definite plus! The specialist said that she doesn't think we will see a 100% improvement in his head shape, but it will definitely stop it from getting flatter and will help make his head rounder...the degree to how much it will help is unclear at this point, but we know any improvement will make it more than worth it. His light blue helmet will be delivered next Tuesday (April 9th).

Finn's flat head!

Finnegan continues to develop and impress his therapists. Just this evening, Finnegan had his weekly session with his Physical Therapist (every other week we meet his therapist at SPICE facility for sessions and on those opposite weeks Finn gets his sessions at daycare) where we constantly heard how happy his therapist was with Finn's progress. He is getting a lot stronger and is just changing so fast! Throughout the course of the weekend he has just overwhelmed us with new changes: rolling over (from belly to back), looking out the window in the car, bouncing and kicking everywhere (which is not a really new development, but it's picked up in frequency), reaching for things, clapping/banging toys together, attempting to catching himself if he feels off balance, crying when he can't get what he want, waving at strangers who wave at him, waving at himself in the mirror... I mean this was a pretty awesome weekend of Finnegan development!

Eatin' some puffs!
His therapist is still concerned with his knees. His right knee especially is a bit tight (which is problematic when we're looking at having him stand and kneel with support more often). It is something she has noted for several months and expressed tonight that she wants to get a doctor's opinion before we do anything more with standing/kneeling. His therapist wants to make sure there isn't anything wrong (a calcification or anything else). We will talk with his doctor tomorrow, but it will likely mean an x-ray that will show if there is anything to be concerned with. If there is a concern, we will have to go see an orthopedic specialist to figure out what's going on, but if all is well we have a couple options for therapy to stretch those muscles in his knees. One option is a stander which looks kind of like a torture chamber, but allows Finnegan to be in a secured and safe while practicing standing. Finn will be strapped in a couple different ways and extend/flex/stretch his knees and allow him to put weight on his legs at the same time. The neat part is that it has a tray that clips on so Finn can play while "working". We would likely start with 20 minute sessions once a day and build up if he tolerates it.
Surpine Stander

The next option (which is probably what we will start with at first) is splints. These are just padded "braces" that go around his leg and provide a little stretch for his knees. He will wear them about 20 minutes a day to start as well. For these, he can stand, sit, lay down, wear them during naps, etc.

If improvement is not seen, there is an option of getting a series of casts that will provide a prolong stretch for his knees. The casts would only have to be on for about 5-7 days at a time, but we're hoping we will see results with either of the two previous options barring any findings in the x-ray of his knees.Beyond that concern, Finn is thriving and just keeping Ian and I on our toes. While he's not mobile, he's definitely vocal!

We did have one step back... his feeding therapist came for an evaluation and said Finn isn't ready for stage 3 foods with the chunks of solids or small bits of big kid food. So, we are just taking a little hiatus from those for right now. We also may have to continue keeping him on formula (as opposed to switching him to milk) because he may need the extra calories, and the therapist doesn't know whether his tummy can handle it yet, since he is "technically" only 8 months old. We'll continue to work with her and Finn to help develop those skills. Interestingly enough, feeding development goes hand-in-hand with gross motor skills, so as Finn continues to get stronger and explores more with rolling, sitting up, crawling, etc., his feeding skills should also begin showing more.

I spent a lot of time this Lenten season reflecting on my little miracle and ways in which I can become the mom that God intended me to be. I spent a lot of Lent focusing on me: eating better, being more active, taking "me" time...and I have to say, I feel a stronger bond to Finnegan. I spent the first 10 months of his life just giving everything I had so that I had nothing left to take care of my self. That resulted in 15 extra pounds and an overall slump. Finnegan's successes helped lift the slump and, as a result, helped me realize how much I've let myself go. This Lent I decided to turn that around and to begin a process that I could extend throughout the rest of my life. I wanted to strengthen my bond with God and my family. I still have a long way to go, but I feel so much more connected spiritually and with my family. I'm so blessed.

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! :)

Tuesday, January 15, 2013

Happy 2013!

We hope you all had a wonderful holiday season. We couldn't have asked for a more meaningful Christmas and a very welcomed new year. We were so blessed to have a wonderful new home (even though it's a work in progress), a healthy little boy, and only better things to come this year.

I was pleasantly surprised on New Years Eve by a phone call from a prospective employer. I had gone through a total of 3 interviews with this organization, and I was REALLY hoping for the job (more so than any other job I had applied for...and there were a lot!). I interviewed for the Research and Evaluation Specialist position at INCCRRA (Illinois Network for Child Care Referral and Resource Agencies). I clicked with the person that would supervise the position and I really wanted to have a change of career pace. The supervisor said in the last interview that they were hoping to make an offer before the new year, so New Years Eve was probably the last day to hear any good news. I was on pins and needles most of the day waiting for a call.

Even though I know you probably already know what happened based on my introduction (eeeee!), I'll tell you about how we were graced with the best news to end 2012. Ian and I were running around the house getting some things organized (the new story of our lives after the move), and Ian yelled from across the house that my phone was ringing. He went to answer it, but just missed the call. Of course, it happened to be the supervisor from INCCRRA. I quickly jotted down her number from the message and called her back. Voicemail. I left an awkward yet semi-professional message that joked about playing phone-tag. I hung up the phone and smacked my forehead with my palm. I hate leaving messages. I attempt to go on with my day. I  had just finished giving Finnegan a bath (in true boy fashion, he got himself messy after eating "lunch") when my phone rang. I juggled a naked baby wrapped in a hooded towel while I tried to grab my phone. It was the supervisor. After the general pleasantries, Finnegan decided to join the conversation. After a couple awkward jokes and laughs, I was offered the position. I didn't know what to do with myself. I quickly dressed Finnegan while telling him over and over that mommy got a job. Each time I said it he smiled and giggled. Each time he smiled and giggled, I smooched on his cheeks. Ian was out in the garage, so I quickly wrapped Finn in a blanket and ran to the back door to tell him the news. I yelled to him from across the yard, and I could hear him drop everything he was doing and yelled, "What!?" He ran to the door and gave Finn and I a big hug.

It was an unforgettable moment. After being RIFed from one teaching job, "let go" from another, applying for over 80 jobs, and subbing on a temporary basis, the prospect of having a more secured job was overwhelming (in a good way). Beyond that, I felt like it was God's way of saying... "See, Christine? 2012 wasn't all that bad, was it?"

My first day is January 22nd. This week I finish up my last maternity leave substitute teaching assignment. I was blessed to be given this opportunity (thanks for having Harrison, Jessica!), and it couldn't have come up at a better time for my family! Even though it was trying at times, I feel like I learned a lot from this experience. I know that while I love teaching, it is not for me right now. In order to focus on my family and myself the way that I want to, I need to be able to come home after work and be with my family; not grading papers. Eventually I want to go back to education...but for right now, I'm anxious to try my hand at research!

In other news, Finnegan continues to thrive with his various therapy sessions. After his physical therapist retired in December, Finnegan has since been seeing his occupational therapist weekly, and recently began seeing a new physical therapist. We both really like her, and we have noticed a big change in his endurance and overall strength. One of the most exciting things for me is to see him interacting with toys, talking to his hands, and not screaming as soon as he is placed on his stomach. He can now prop himself up on his elbows and roll onto his side. We are working on rolling over and sitting up (among other things).

He is up almost every morning at 5am (or about 15 minutes earlier...before mommy and daddy's alarm clocks go off), and usually passes out at about 7 or 8pm. Between all the cute little girls he plays with while at day care, the eating of baby food, and the therapy sessions, Finn is just a busy bee, and he crashes at the end of the day.

Already this year, we have learned that Finnegan and sweet potatoes do not mix, diaper rash is no fun, and Finnegan has a vocal range of an opera singer.

Finnegan goes to the neurosurgeon next week to check on his head shape. His pediatrician was a bit worried about how flat it has gotten recently. This will help us figure out if Finn will need a helmet or not.

I hope you enjoy the pictures and videos of our little guy...there are plenty more where those came from! ;)

Finnegan rocking the tummy time!

Forever entertaining... :)

The best way to get Finn to prop himself up on his elbows is to put a mirror in front of him... he likes to see himself!

I have a feeling Finnegan will grow up to be one of those people who talks during movies...