Such is life

Can it really be last August when I last posted? I always said when I was growing up I wanted to be a teacher and a writer. It's a good thing I chose the teaching profession because my timeliness on writing obviously stinks. I read blogs online where people work full time, have crazy lives, and still manage to tell people about their craziness every day. I'm not sure how, but kudos to them for figuring it out (and I wish they would tell me their secrets!).

Anyway, the few people who come here are waiting on details of the kids, so here goes.

Callum is doing well. He is five and every bit ready to go to kindergarten, but will probably be terrified when the time comes this fall. He is playing soccer again this spring, and while we're not necessarily planning on any big scholarships any time soon (but really, he's five, so I just hope he is out there listening, trying, and not spending his time picking his nose or something like that), he's really improved with his listening and awareness skills.

Darth Vader birthday cake!

Official 5th birthday picture with Hey Hey

 Declan is also doing really well. Sometimes with him it seems like we are doing one step forward and eight steps back, but when we look back at the progress, he's come leaps and bounds from where he's been. Eating has been our main struggle, as we've had to do a lot of trial and error to figure out what works well for his system, which has caused for lots of stress and difficulties on our part. Gaining weight has been difficult, but we're crossing our fingers that we are finally on the right track and starting to see improvement.
Developmentally, he's doing great. He is relatively close to walking on his own, but since he does everything on his own time, it could still be a year or so away. Preschool and outside therapies have been great for him. He continues to move forward in so many areas and we are really grateful for that. 

Having fun!

So sweet

 In big news, Declan finally sleeps in a bed, and he has been sleeping all night! This is super huge for us. We have been in newborn stage with his sleeping for three years--think first couple of months up all night newborn stage--with many nights of getting up with him and having him cry for an hour or two at a time without being able to help. Having no outside help with this has been exhausting to say the least, but it has finally improved. Not only has his sleeping improved probably due to some medicine changes (we took a trip to Cincinnati Children's Hospital since we hadn't had a new hospital in a while), but we also found a big bed that had railings on all sides. He rolls so much in his sleep, even the toddler railings wouldn't do enough to help. Scott and I have finally had the luxury of going to bed and actually sleeping all night and not feeling like zombies every day.

Sleeping in a big boy bed

Easter time

Grump face--but I promise he was happier than he looks (I think!)

Off to Preschool

I know--two posts in one week, but with such awesome news, we just had to share. Today was Declan's first day of preschool. I think it's still hard for it to sink in--it's super amazing and exciting that he's made it this far, that we've made it this far, and that it really has been three years since his birth. I think it makes it harder because he develops at such a slower pace than other kiddos that we sometimes realistically forget his true age. We just go by "Declan age" at home, and it works just fine, but until the rest of the world goes by "Declan age," we keep plugging along. Plus, so many times we've also had to take it in little moments of survival that we haven't been able to look to the future, so it kind of sneaks up.

As for preschool, Declan will be attending in the afternoons two days a week at one of the local elementary schools. We know he's going to love it and learn so much because he is super nosy, and they also have a lot of toys and developmental equipment to use for him.  It is still going to be a massive change for him to get used to, though, especially with missing out on nap time.

He started by having the bus pick him up at daycare. Amy was awesome to send us a picture (We knew being there for the pickup would be extra weird for him--he wouldn't understand why Mom or Dad showed up to put him on a strange vehicle.)

Doesn't he look so grown-up in a tiny sort of way? It's a good thing they don't have a weight requirement to ride, or this kiddo would be out of luck, since he borderline meets the minimum in his car seat to turn him forward facing even.

He spent the rest of the afternoon playing and doing all sorts of things. The teacher already informed me he's a class favorite, and that they'll spoil him to no end. Today he firmly let them know he didn't want his snack by throwing it repeatedly, and the typical peer in his room thinks he's the best thing ever, so he already has made friends. He also got to play in the ball pit, and his teacher, Miss Julia, said he loved it.

After the fun, he headed home. The whole family got to be home to see him get off the bus.

 I would have taken a couple more pictures outside of the bus, but it was starting to thunder and lightning, so I wanted the driver to be able to get on her way to drop the other kiddos off in case of rain. Apparently he was not a fan of the ride home, as he cried because the other kids were being quite loud, and he was exhausted by then, too.

Clearly this kiddo was worn out after his first day. He fell asleep not long after being home. Note that he was still clutching the string he was playing with (one of his favorite toys), and yes, one arm is stuck under the couch. We finally had to wake him up at five for dinner, or I think he would have slept all evening. 

I think he's ready to do it again, though!

Yipee, Yipee, Someone's Three!

Brotherly love at 6 a.m.

 Today was Declan's third birthday. It was such a monumental day for so many reasons, and every birthday that comes for him brings so many emotions, but above all else, we are thankful. Thankful for all of the prayers that have been answered for this child, for all of the positive developments he continues to slowly make, and the laughter and fun he brings us regularly. While he has caused more than a lifetime's worth of worrying and difficulties, we couldn't imagine it any other way and we are just thankful that he gets to be a part of our lives.

We had his party yesterday, keeping it low key with just some family. This was perfect for Declan since he sometimes becomes overwhelmed with too many people and too many loud noises. He was more into opening the gifts than I thought he would be, but the paper was still definitely the more fun part of it. And yes, he wore a necklace--this was a recent new purchase to help with his oral sensory need, and they have been a lifesaver. For yesterday, though, we'll call them his party beads.

After the party, Callum got to play baseball with his Great-Papaw. It's not every kiddo that gets to play with a ninety-one year old!

 Declan got to swing, which is still one of his favorites. I think he was unimpressed by the lack of attention he was receiving at this point, though.

The best grandparents/great-grandparents!

 Today we spent a basic day relaxing. We would like to celebrate by taking Declan to the Children's Museum, but after the party yesterday, we decided to relax and celebrate that later. Declan didn't seem to mind getting to stay in his pj's all day.

The birthday boy

Official Squeaks Picture

His birthday definitely brings a range of emotions, as it always does, but this year is a bit more because it signifies the end of his early intervention services. We now have to sign him up for some outside services, which he definitely still needs. Also, on Tuesday, this tiny kiddo will officially start preschool at the local elementary! He will go two days a week in the afternoons I know he will love it--he loves being around others and is always nosy, so I'm hoping the other kids will push him to improve his abilities. On the other hand, changes always bring about filling out numerous forms, which is never easy to do, especially when some focus on development. We know he's come so far from the dark early days, but it sometimes doesn't make it any easier to check "no" for almost all basic milestones for his age. I just wish they had a choice for marking cuteness and stubbornness. He'd pass those easily!

Surgery Success, so far

Declan has successfully survived surgery number six. For the rest of us, success has yet to be determined.

For those who haven't ever experienced surgery (thankfully) here's what our day looked like. Granted, it would be different if it were inpatient, but this fortunately was a relatively quick procedure. We started the morning off right for Declan. He couldn't eat after midnight the night before or drink clear liquids after 11:30 a.m., so we figured if he was going to be grouchy, we'd go ahead and cram as much as possible in the morning. (Callum had the luxury of hanging out with the grandparents for two days.) We started off the morning with a therapy co-treatment, meaning he had speech and occupational therapy at the same time.

Two of his amazing therapists

Right after that, he had his monthly nutrition appointment. Surprisingly, he did amazingly well, especially considering he hadn't eaten since the night before and isn't the biggest fan of juice instead of milk.

I wish I were this happy without food for 12 hours!

We arrived at the hospital at 12:30 and were one of only two families in the waiting room. Apparently Declan was the last scheduled surgery for the day. He was able to spend quite a bit of time cruising the area in the car, which he was a huge fan of.

Can I drive out of here?

We were then called back and they took him just after 2:00. Scott was excited to sit in the room and watch soccer, and I won't lie that it was a bit nice to have a few hours of just sitting around having nothing to have to do (although I could have done without the whole surgery part). After receiving reports that all went well with both the surgery and the hearing test, they finally brought him back to us around 5:00. We were able to get enough apple juice in him that they felt comfortable taking out his IV, and once he was calm enough, they let us leave. If you're wondering what the white thing is by his arm is, it's just the board to hold his arm in place.

Tolerating the juice

We stopped and gave him a bottle of milk in the lobby, which he downed and then promptly fell asleep and slept until early the next morning.

Finally happy after a bottle of milk

The only problem of surgery was the IV, as usual (a story for another day). Needless to say, we counted at least 11 pokes in their attempts to insert it.

My arm is too stiff--I can't put it down!

After the first day, he's been mostly fine with his cast, and he didn't need pain medicine more than that first day. The real issue has been keeping it out of his mouth. We've already had to make two visits back to get it looked at once and then re-wrapped once. *When I started this post, it was once. I've now had to re-wrap it twice myself (thank goodness the lady we visited was realistic enough to give me a bag of extras and show me how to do it if necessary, considering the second time was 10:00 Sunday night), and the latest wrapping looks pretty good. I believe I can now officially add this to my unofficial Dr. resume. Just keep it dry was the only instructions we received--easier said than done for an orally fixated kid who always has his hands in his mouth. We tried a plastic bag and a sock (I literally cannot leave him by himself for more than ten seconds or he has the hand in his mouth again, soaking the cast or is yanking out the gauze with his other hand) and that allowed me three minutes of freedom before he had the sock and bag off and was playing with them and eating the hand again.

I really think that could be a new torture device in prisons everywhere--give a prisoner a small orally-fixated child with a soft cast and tell them they must successfully keep the kid happy while keeping his hand out of his mouth and keep his other hand from yanking the cast. They can't tie it down since he needs to be able to move it around for development and therapies. Oh, and they also have to successfully fix food, eat and do other normal activities (you know, like go to the bathroom) at the same time.

The cast clearly isn't stopping him! He's holding on with the cast hand.

We go back to the hand doctor July 8, which isn't soon enough for me (thankfully only one more day, now that I'm finally getting around to it). Although, it is our wedding anniversary. Nothing says happy anniversary like spending the afternoon at the doctor's office! This is the second year in a row--such is the life with a needy kiddo. Although this year I'll take it, so long as it finally means freedom for all of us.

Summer Fun

Although school just ended last week, we've been trying to take advantage of the nice weather. I know it's been ages since I've posted pictures, and the boys continue to grow and change steadily. Although we have the usual therapies and some doctors' appointments, overall the goal is relaxation and progress (if it's possible to do both at the same time!) Declan does have another surgery on Monday, so things will be much better once we have that behind us. It's outpatient and for improving the functionality of his left thumb--plus a bonus hearing test just for fun--so we're really hoping and praying it's a quick surgery with a simple recovery. I'm not looking forward to dealing with another cast, though!

Here are some random pictures from the last several weeks:

He says this is his official baseball look

Serious Face

Silly Face

Play time with Daddy!

 We made a pit stop over Memorial Day weekend to Madison for my cousin's graduation. While there, we stopped at Hanover to check out the college. It was a first visit for the boys. On the plus side, graduation was going on at the time, so the rest of campus was quiet! We then headed to Louisville to hang out with Scott's family and meet our new niece, Ashlyn. I loved holding her, but I think Callum and Declan weren't that interested, since she doesn't really do anything yet :).

iPad time with Reegan

Water fun with the cousins

The newest cousin, Ashlyn

Spring has Sprung, Sort Of

Since I last posted in January and it's now mid-April May, I feel like there should be tons to catch up on, but thinking about it, there really isn't. And in our world, this is actually quite a good thing. Overall, we've been pretty healthy (knock on wood!), and life has been relatively simple lately. Well, as simple as our lives can be trying to juggle Declan's full schedule that a teenage socialite could only dream of. Not that they would want to hang out with the doctors, though.

Spring break was our busiest time by far. While I was really grateful for two weeks off, and I'm glad I didn't have to take days off for the appointments, by the end of the weeks, I was exhausted. Declan and I spent time at five different hospitals (which spanned two different states), had a total of seven therapy appointments, a haircut and a dentist appointment for both kiddos, and we were finally able to get Declan's gait trainer. By the time it was over, I think with the amount of driving done, we probably could have made it halfway to Florida. Fortunately Callum was able to go to preschool for some of those days, so we were able to avoid dragging him on "Hospital Tour '14" as I dubbed break this year.

Now that it's almost another month past posting this, it's time I should just post and be done. Hopefully I can take the time to add some pictures sometime, since that's all anyone wants to see anyway!

Happy 2014! A Quick Recap

We've successfully made it through the end of 2013, and although it was a busy year, looking back it definitely was a much better year than the couple of years before it.
As an overall recap, since I'm horrible about updating this, although some might be repeats.
We moved in March. We spent the six months prior to that first living with my parents and then with my aunt and uncle. How we survived that, I'm not sure, but we're absolutely loving our house and it fits us perfectly. I don't remember what I've posted before, so here are a few shots from prior to moving in of some of my favorite areas. 

Eating area--I love all of the windows and the table space

Family room looking through the window opening into the kitchen

Upstairs railing

It's not huge, but I have my very own sewing room!

Kidwise, things have also gone well. Declan only had to endure anesthesia twice--once for an MRI which came back with very positive results, and once for his ear tube placement, which was a success. He is now sitting on his own when he wants to, and is working on walking in his gait trainer. He mastered the art of rolling all over the house, although he still isn't really crawling at all. He isn't talking at all yet, either, although he has no problem expressing his opinions and making sure he's heard.

Declan also recently started speech therapy, which brings his weekly therapy total up to three, along with a monthly nutrition therapy. Doctors appointments have gone well for him also, and he's now cleared to see urology yearly and cardiology every other year. Given that I think we're up to five doctor's appointments over spring break, along with all of this therapies, I'll take a break wherever I can get it!

He has sleeping covered

GI continues to be a struggle still off and on. He finally started pooping on his own, but that is tied into the GI realm. We had a really good run of eating well, but then have had a setback the last few weeks, and some new teething hasn't helped. However, he is doing really well with using a straw sippy and is increasing his ability to chew foods well. But then again, he's definitely hitting the terrible twos with his preferences and has no problem refusing food at one meal he loved at a previous meal.

Callum continues to do well also. He started a new preschool in the fall, and minus a few typical four year old behavior issues, he has adjusted really well. He is continuing to mature and is really enjoying being there. At home, his favorite thing to do overall is build with Legos. He often says, "Let's use our imaginations" to do something. He also loves Star Wars, dinosaurs, puzzles, and has a scary-good memory.

Here's to hoping 2014 is even better than last year!