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!

Tis the season. . .

. . . for an update. Overall life has been pretty low-key (well, for us anyway), which is nice. In October Callum celebrated four years old, and had a grand time with his party and Lego cake. I was busy with the party and relied on others to take pictures, which I just now realize I still need to get.  This year was the first year he asked for anything specific, and he wanted to take a friend from preschool to the Children's Museum. Since Scott happened to work with the friend's mom and we have a museum pass, this made for an easy party. This is really the first playdate of this type that Callum's ever had, and he had a blast. Sadly, the family had to move to New Jersey in November, which seems just our luck.

Star Wars and Legos--his two most favorite things

 

Starting to become more helpful,

but is still quite silly.

At four, Callum continues to amaze us daily, and usually in a good way. He loves Legos, Star Wars, reading, listening to music, food, Phineas and Ferb, and talking. He's extremely friendly and loves to be in charge. He is absolutely amazing big brother and has always looked out for Declan (Well, almost always. He still refuses to do anything with diapers, and now that Declan is getting into toys more, Callum is starting to get irritated with him at times).  He still loves his new preschool. We've been through a couple rounds of age-typical behavior issues where he has really pushed and tested his boundaries, but his teacher has handled it well and worked really hard with us to improve the behaviors positively.

We also had Halloween. Callum was a weenie and refused to help scrape out the pumpkin, but loved dressing up and getting candy. We went to our church's Trunk or Treat and went to a few houses. As per tradition, Grammy made the costumes and made them pajama friendly.

Declan overall has been doing really well. He started speech therapy last month, which now brings his weekly therapies up to three and then has monthly nutrition. Older kids' social lives have nothing on this kiddo, especially adding in the appointments! We just started working with a gait trainer a couple of weeks ago, and he's already really enjoying propelling himself down the hall and into the kitchen cabinets.

Don't worry, he can still fall asleep anywhere

Health wise, Declan went through another round of RSV and breathing treatments right before Halloween, which then brought on more ear fluid. This time he was nice enough to share the virus with Callum, who then also ended up with an ear infection. We found out about the fluid after a second attempt at a hearing test. Antibiotics didn't clear it up and we've been dealing with the fluid for a long time, so he's now set to get tubes put in on Tuesday. Other than having to be at the hospital at 6 a.m. in predicted single digit temperatures, it should be a relatively minor procedure. We hope this helps his hearing as well as solve yet another piece of the eating issue puzzle we've battled off and on since birth.

 This week we had the first major snow of the season, and it was warm and sunny enough today that Callum spent a lot of time outside in it. Declan doesn't fully have the proper gear and still gets cold easily, so he wasn't out for very long, but he seemed to enjoy it as much as Callum.

Guess Who's Two? and Other updates

What? You can't put your foot behind your head like this?

When I go to write these, I feel like I should be super-creative or witty. I read several blogs haphazardly that always have such amazing writing and I aspire to be like them. Instead, it's like tonight with me writing this as Declan finishes his last bottle and I try to be awake enough to write something coherent. So if you're looking for witty or creative, move on. If you're looking for some boring writing with cute kiddo pictures thrown in, then you're just in the right place.

See? Isn't this cute?

We had a great summer overall, and are now settling well into the fall back-to-school routine. Although with a start date at the end of July, we're definitely beyond the start of the school year. Things have been happily low-key with not too much going on.

Another cute picture! Well, maybe not the glasses.

Both kids are in new daycare settings, which has been a great blessing to me--Declan is in an in-home setting where he is the only kiddo three days a week and only one other girl the other two, so he gets lots of one-on-one time. While I loved being at home with him over the summer, I learned for his therapy that the more people working with him the better because he shows strengths for different people, so me being at home with him isn't the best solution and this is the perfect setting then.

His current favorite pastime

He can still sleep anywhere

Callum gets to ride with Scott everyday and is going to an all-day preschool that has a great structure and really works on teaching him life/school skills. He absolutely loves it and comes home happy and exhausted. I am a little suspicious of his eating habits since every day this week he claims they have had chicken for lunch, which makes me question either his ability to distinguish meat.

Callum's also playing soccer--he also played in the spring, and I've been proud of his maturity and growth in being able to listen and pay attention, although sometimes he is still that kid who has to be silly or talk nonstop (I know, a shock!)

In other news, Declan has officially entered the terrible two's! We had a nice basic birthday with family, and considering the amount of people, he did remarkably well. He loves his presents and it is great to see how interested he is in them. He hasn't perfected sitting yet, but has suddenly made huge leaps in that and can sit for lengthier times without help. He also rolls everywhere without problems, and we're working on scooting and spending time weight-bearing on his legs. Knock on wood, we also haven't had any major problems lately with his health. We dealt with ear fluid over the summer, but has done well otherwise. Get this--he weighs a whopping 20 pounds! Yes, we know most kids are that weight at one year old, but we thought we'd never get there with him. He helps us get our money's worth out of clothes.

 

It's really May?

Time has been flying by here in the Green house. Mostly good, so that's a plus. I'm not currently on my computer with pictures, so nothing fun to look at, but I did want to give an update. We finally were able to move into our house in mid March, so that's been both really exciting and chaotic all at the same time. Many of the boxes are unpacked, but we still have a bit to go. It just seems the kids prefer not to allow us time to ourselves to get things like that done.
As for other updates:
-Declan is doing well overall. His personality and abilities continue to grow--sometimes faster than others. He has learned to roll quickly and can now roll across a room without much effort. He is also sitting for longer bits of time now. We've never been witness to it, but at therapy he actually sat for five consecutive minutes without any help or falling! While we have a bit to go before we can officially deem him a pro at sitting, this is a huge accomplishment. In the last month he has had a barium enema (not pleasant--while it was one of the easiest tests in a sense, it was one of the most disgusting he's had!), an MRI (this required anesthesia but fortunately he came out of it beautifully again), and now has some cool orthotics. All of the tests have shown no problems, so that's another thing to be thankful for! He has also proven to us many times that he understands the word No, and knows exactly how to get out of it, based on the sneaky smiles he gives. We'd also really enjoy if he would decide to go to bed earlier than he does--he prefers to stay up until around 9, which wouldn't be bad except for the fact he's up at least once overnight and then sometimes refuses to go back to his crib, preferring to sleep with Scott or I on the couch or on the floor.
-Callum is a typical three year old right now. Generally he's a great kiddo, but he has decided tantrums in the form of throwing and hitting occasionally are fun. He tells me it's good to be bad and he likes having bad Callum around. So now it's just a matter of channeling that energy/disciplining the behavior without having our new house destroyed in the meantime. He still loves preschool, and we're looking into our options of increasing his learning time next fall since he craves that stability/activity time.
-As for Scott and I, we're just trying to survive/get unpacked/and live amidst the usual chaos. At the top of our wish list right now, though, is a full uninterrupted night of sleep--now that would be amazing!

And you thought your kid was special

Happy 18 months Declan! You'll have to wait in suspense for a picture of him with Squeaks, since Squeaks is currently packed away at the grandparents' house. Ah, the joys of not really having a home of our own, but soon enough. We did get Hey Hey to do a stand-in appearance. Please ignore the dirty shirt, too. He felt the need to show off to everyone what he ate for lunch, apparently, and sitting still is not his strong suit these days.

In thinking about Declan and where he's at ability-wise right now, I realize I don't think I've ever done a full post on what all we have had to deal with over this kiddo's short (albeit getting much longer--horray!) life.
So, here's a summary of Declan from birth to now. Although is that even possible? Those who have been around us on a regular basis are probably laughing,or maybe stopping reading right here at the novel they could be faced with. Don't worry, I'll keep it brief-ish.

Total surgery count (Doesn't everyone start out their kiddo's milestone list with this?)
4: PDA ligation (minor heart surgery)
Ladd Procedure (intestinal malrotation, which came with a freebie appendectomy)
Kidney Surgery (something with his ureters technically, but I don't know the fancy name)
Thumb surgery (he lost his extra thumb and can only count to ten now :(  So much for being the cool kid in class).
As of now, these are the only known surgeries, but who knows what excitement his future holds.

Total days in the hospital:
~30
Three ER visits, one by ambulance

Total doctors seen so far:
NICU Doctors
Pediatrician
Cardiologist
Heart Surgeon
General Surgeon
Geneticist
Developmental Pediatrician
Urologist
Orthopedic Surgeon
Neurologist (only once, thankfully!)
Endocrinologist
Ophthalmologist (the medical kind, not the regular kind)
Gastroenterologist
Hand Surgeon
I'm sure I'm forgetting a couple. Fortunately, a couple of these we don't have to see anymore (like the heart surgeon and general surgeon), and many of the others are on a six month to one year rotation. It used to be we saw many of these as often as once a month, some more than that--at the end of my maternity leave I started calculating how many hospital days/doctor appointments I had on the supposedly luxurious 12 weeks off. I finally gave up when I got to over 45 because then it was too depressing. 

Therapies:
Weekly occupational and physical therapy
Monthly nutrition

What he technically has:
Unbalanced translocation between chromosomes 2 and 4. He has a microdeletion on 2p and a partial trisomy of 4q. Don't worry, most nurses and some doctors don't get it either. I once made the mistake to the wrong nurse of saying he has Declan syndrome, and she believed me until I had to explain I was just joking. 

What this means for Declan's future:
Anyone's guess at this point. When we met with the geneticist, we were given a packet of research on people with similar duplications, and we saw some of the same traits in Declan as these other people. However, no one else in the world has the same chromosomal make-up as he does, and even if they did, that's only part of the predictor of him. We know he'll probably be delayed throughout life, but then again, most people are in some way and they turn out just fine. We just take it as it comes--it's all we have time for!

What Declan is up to these days:
We've battled severe acid reflux from early on in life (think screaming, refusing to eat, vomiting all of his bottles, etc.), and we have finally made some progress. Now he's doing a great job most days of drinking his bottle concoction--whole milk mixed with Carnation Instant Breakfast and a tablespoon of cream for good measure. He's eating 4-8 ounces of baby food, with tiny bits of regular food here and there.
Declan loves to play and is really reaching for toys and throwing them around. His favorite, though, is drawstrings on hoods, and actively seeks them out, even when they're tucked away.
He loves to chat and his idea of chatting is making a lot of random noises, but they're varied noises, so we're super-happy about that.
Most importantly, he is oh so close to sitting! Reflux has played a large part in this battle, along with really low muscle tone (great for future gymnastics efforts) and his random hospital stays, but this weekend he was actively sitting for a couple seconds at a time. This is super huge in his ability for future development of crawling and eventually walking, but it's safe to say we're years from the walking stage, and we're okay with that so long as he progresses on the Declan curve, as he does with everything.

And the work goes on

Well, in an ideal world, we'd be moved into our house by now and finally getting some sense of normalcy, if that really does exist. Instead, they are frantically working on all of the interior, planning to be done early/mid March. The crazy wet weather we've had off and on has made some of the jobs difficult the last couple of months. I just really hope we're in by Spring Break, because if we're not, I don't know if I'm going to mentally take it much longer. On the upside, they installed cabinets last week, our hardwood and bathroom floors are installed, and our trim work should be done, so it's finally looking like we're going to have an actual house! We might share pictures soon, and we might just make you wait until the house is finished to see them. I do love our cabinets, though, and I especially love our kitchen.

Maybe sometime I will have a chance to go back and recap the last few months in photos, but since that may never happen, here are some random pictures from around the holidays. It seems we need to work more on Declan smiling for the camera!

Declan's cool cast post hand surgery--I really don't miss this one bit!

First time bowling

Finally a smile. Well, sort of, but there are teeth!

He had to line his presents up in a row before opening

Love the hair!