We're Still Here!

Busy days.

Trying days.

Challenging days.

Fun days.

Yes, all of the above.

I must admit that this last week has been a difficult one, and I didn't really expect it. Getting a hearing aid for Nathan was wonderful, amazing, exciting...and for him, a scary, overwhelming, huge change. He started wearing it immediately when we got home and did not try to take it off. I was so happy about this - I was prepared for it to be a battle. What I wasn't prepared for was the way Nathan reacted to being able to hear. He got quiet, silent actually, when he is normally very loud. His wonderful sleeping habits went down the toilet and he spent hours screaming in the middle of the night. We went from having him sleeping soundly in the crib and waking only once for a few minutes to having him back in our bed because it was the only way he could be consoled. In the daytime, he became angry, aggressive, unhappy...it was reminiscent of our first days at home. It caught me by surprise and to be honest it has been very discouraging to have to work through all of this again.

And yet...I understand it. When I think about it, it makes sense. He is overwhelmed, and this is how he reacts when he's overwhelmed by big changes. At least we know that much about him now! And thankfully, this time we are able to be a comfort to him through this time. His head hits my pillow, and he is out for the night!

We have seen glimpses of the happy boy we were beginning to see a week ago and it makes my heart so happy to see him smiling again. He has been through so much in the last couple of months and I see such a strong spirit in him.

He's been having fun with brother...


And we went to the fair and saw tons of animals (the boys loved them all!). Matthew had lots of fun walking around with Grandma and Grandpa :)

It is crazy to think that just two short years ago we were at the fair and my heart was aching because my arms were still empty...and this year my heart was so full as I looked at my two boys in amazement! Every once in a while it still catches me off guard and I think, woah, how did this happen?!?!

Last week we headed to the eye doctor. The good news is that Nathan will not be having eye surgery any time soon :) Maybe down the road, but we'll just handle that when (if) it comes. For now, we will be working on strengthening his right eye by patching his left eye for 2-4 hours a day. It's a pretty common thing that many kids have to go through and so far he has done great with wearing the patch. He has worn it for 2 hours every day so far with no fuss. He continues to amaze me :)

And of course, I have to show off some of the fabulous smiles we are blessed to see around here! These boys just melt my heart (and drive me crazy, all in the same day!).

Hearing Aids, Potties, Haircuts and Smiles

What a week! So much good stuff to catch up on.

On Tuesday we had another appointment with the audiologist and I was amazed to find out that we could take home a loaner hearing aid! Nathan has been wearing a BAHA (bone anchored hearing aid) since Tuesday evening and it has been simply amazing to see him hearing us. The BAHA is a hearing aid on a soft headband, and it works by transferring sound directly to the inner ear using bone conduction. It is amazing! We found out on Tuesday that Nathan does have ear canals and ear drums, so it looks like he may be able to have ear level hearing aids that go behind his ears with a molded part inside his ear. We are starting out with the BAHA and we'll see how things go. Nathan loves to wear the BAHA, although at the appointment he did get so upset that he threw up on me. It seems like hearing for the first time has been pretty overwhelming for him as he has been waking up a lot at night, has been very quiet during the day, and has seemed pretty angry and aggressive again the last few days. I think this is just how he deals with being overwhelmed, and thankfully this afternoon and evening he was much more himself. This has been an amazing journey and we are so thankful for all the progress we are making. We have an evaluation for speech therapy in a couple of weeks and I am so excited to hear him learn some words! But for the record, I really think he said his first word already - he was screaming "MAAAAAMAAAAAA!!" last night from his crib while Brad was trying to get him back to sleep :) And yes, it worked, and he ended up in my arms!

In other big news, Matthew decided this was the week he was going to become a big boy. He has been showing signs for a while that he might be getting ready to use the potty, so on Monday I decided to just give it a try. He was diaper free for about 4 hours and used the potty 4 times without any accidents! Okay, then! He has not worn diapers for the last three days and has only had a handful of accidents. I did not see this coming but I am very glad it's been so easy! I must admit I was dreading potty training.

Other than doctors appointments and potty training, we really haven't been leaving the house much! It has been a fun week, though, and I am loving spending time together. There is really only one rough time of day, and that is right before dinner. The boys are always crabby, Brad and I are exhausted, and somebody has to cook food! Our solution - I make dinner while Brad entertains the troops. I laughed when I peeked in the living room the other day (all had gone quiet which is usually a sign of trouble!) and found this:

A good solution to the problem, I think!

Another problem we have had to solve - how to keep the BAHA from slipping off Nathan's head! He has gorgeous, thick black hair. Wonderful to look at or run your fingers through, terrible if you're trying to keep a headband on it!

We were fixing it every five minutes, and nobody was happy about that arrangement!

The solution: a haircut. I was so sad but at the end of it I realized it was a great idea. The headband stays put, and Nathan looks perfectly adorable!

Everybody's smiling now! And I'll be even happier if tonight does not involve two hours of awake time from 1-3am :)

Happy Day

Nathan did so well yesterday! So much better than I'd anticipated. He was not at all grouchy in the morning (a major accomplishment for a 1 1/2 year old who hasn't eaten anything) and after his happy medicine they wheeled him away in a wagon for his procedures with no tears. He was pretty out of it, which had us laughing a bit, and I only teared up a little saying good-bye to him.

We got great news in finding out that his ear canals go all the way through, and the doctor was able to remove a lot of wax. I don't know if it's all in our head or what, but he seems to be hearing a lot more today. We also found out that he will be a great candidate for a BAHA (bone anchored hearing aid) that he will wear on a soft headband. With it they expect that he will have normal hearing! We are so thrilled and excited for our appointment on Tuesday to get started on the process of getting him this hearing aid.

Today was an absolutely lovely day. Nathan was by far the happiest he has been since he arrived home. He was smiley, snuggly, and kept coming up to give us big kisses and hugs! He had fun playing with toys and had Matthew laughing so hard when they played peek-a-boo together. It was wonderful to see and I was so thankful that he seemed so happy and relaxed. He is such a joy and I really can't remember our lives without him!

Here a Specialist, There a Specialist...

Everywhere a specialist, specialist!

Sorry, I don't get out much, and we sing a lot of Old MacDonald! :)

Now that Nathan has been home a few weeks we are kicking the medical stuff into high gear! He has already had an appointment with an orthopaedic surgeon (which thankfully did not result in anything having to be done) and on Monday we met with a pediatric ENT (ear, nose and throat doctor). Nathan also had a hearing test done. It was a long day and frankly, at the end of it I was a little disappointed because we hadn't learned anything new. His hearing is what we thought it was (which is just fine and what we expected) and basically they just needed to test him to determine his level of hearing loss.

Nathan was born with Microtia, which means his ears did not form correctly before he was born and he has hearing loss associated with that. He had a hearing test done in a booth on Monday but because he was getting agitated towards the end of the test they were not able to get all of the info they wanted.

So...tomorrow afternoon Nathan will be having a CT scan to see what his middle and inner ear look like (his ear canals are very narrow and the doctor could not see) and he will also have an ABR (auditory brainstem response) hearing test so that they can get a clear picture of everything that is going on, what kind of hearing loss he has, and so that we can know how to move forward in getting him hearing aids. He will need to be sedated for these tests.

I am not looking forward to him going through this, and I'm not looking forward to how cranky he might be since he can't eat anything all morning long, but I am very excited to see the results and to get moving towards hearing aids for our little guy. He does have some hearing, and often responds to me (for example, if I say loudly, "Do you want more?" he will smile and do the sign for more) but I know there is a lot he is missing. In the fall we hope to begin speech therapy.

Next Monday we will head to the University hospital once more (it's about a 40 minute drive) to the eye center. We noticed pretty quickly after he came home that something was amiss with his right eye, and the doctor confirmed on Monday that it does not turn to the right. Not sure what that will mean as far as treatment, but we'll take that one when we get to it!

One day at a time! We would appreciate your prayers for Nathan tomorrow. He is so precious and is just relaxing so much every day. It is amazing to see and he is a wonderful, funny, spunky, loving little boy. We are so thankful for him and that we get to be his parents!

Some Favorite Photos

It sometimes feels like all we do around here is eat...!

Nathan's favorite place to sit and play with a toy - on Matthew's lap.

Peek-a-boo!

I haven't managed to get them to both smile for a picture yet...

Sleepy boy :)

They spend a lot of time looking out the window and waving at cars!

I love making this boy smile so big his eyes disappear :)

We are seeing more and more smiles from Nathan!

We took the boys to the beach yesterday - it was a big hit!

Heat Wave!

It has been hot hot HOT around here the last few days! So to battle the heat, we have been having lots of fun in the backyard kiddie pool and sprinkler. The boys just love the water!

The heat didn't stop us from having lots of fun at a local hot air balloon event. It was free this year for the first time in a while so we couldn't resist...neither could everyone else in our city, apparently! It was crazy packed but really cool to see all the hot air balloons. The boys were very excited to see them go up.

Both of the boys spent the night pointing up in the air at the balloons. A favorite was a balloon that looked like a teddy bear.

I must admit that we haven't been spending all that much time outdoors since it's so hot (except to go in the pool and eat watermelon), so I find myself trying to fill a lot of hours here in the house. The boys were up at 6am today and I literally thought to myself, "Okay, 6 hours until naptime...what are we going to do for SIX HOURS????"

We managed to fill the time though and when I couldn't take Little Hurricane making a mess anymore I pulled out the kids table and we did some coloring, puzzles, and played "Memory". Well, Matthew and I played while Nathan chewed on some of the cards :) It was good to have a little bit of down time and we will be doing that again tomorrow for sure!

These boys sure are lots of fun!!!!