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!

House Pics!

 Our house building is coming along well, and I'm finally getting around to adding pictures. We're hoping to be in the house in the next month, which is both scary and exciting at the same time. They're working on finishing drywall this week, and then from there, it's mostly all of the fun finishing touches. We've learned that building a custom home can be interesting to say the least, and it's definitely not for the indecisive person. Right now I'm second guessing a lot of the choices, but I know I will love it once it is finished.

Working on framing

The view from down the street (complete with a water tower!)

Paint!

A tub-lest you think we forgot to put them in

Adding the brick

Our first snow--over nine inches

Interior sneak peek

Finally. . . An Update

It's sad to think it's been over three four months without an update on here. I'd like to say that it's the idea that no news is good news, but it's more that there's been so much going on it's been hard to find the time to even think about this blog, much less time to post on it.
Without being too lengthy  (nevermind, it's really lengthy--just deal with it or ignore it), I'll try to recap the rest of the summer and start of fall, especially since I try to use this as a journal of our lives. Unfortunately, pictures will have to come later since they're on my computer and I'm not currently using it. But if you don't like to read the writing, stop now and just stay tuned for a picture update to come shortly, hopefully.

July
We thought our major stress levels were going down a bit, since Declan's latest surgery was behind us and the only current stress was trying to sell the house. Unfortunately things changed very much very quickly in the month. My aunt Mel (aka Auntie M, babysitter/daycare extraordinaire) had a heart attack, and due to the location of the blockage causing the attack, required open heart surgery. Following surgery, we learned she had a major stroke and has been facing a long recovery from that. She is now home and doing well physically, but she lost all communication skills and is currently working on relearning how to speak and write. Because of this, I had to frantically search for a new daycare for the kiddos, which with Declan's high maintenace requirements was much more stressful than a normal daycare search, which I imagine is difficult enough. We did manage to eventually find someone who was willing to give Declan a try, and although there have been a few bumps in the process, overall it has gone okay, and the socialization has been great for Callum, even though we all miss Auntie M.'s skills.

August
School started August 1, and it was also supposed to be the beginning of a new start after the difficult end of the summer. Unfortunately that wasn't to be the case. Lola suddenly became ill the night before school started, and Scott planned on taking her to the vet after work the next day since they didn't think it was anything major and seemed like some sort of flu type bug. Instead, after work she was essentially unresponsive, and while they could not make a definite diagnosis, none of the options were good, and so we had to put her to sleep.
On the positive side, towards the end of the month, we finally got an offer on our house, and after a counter, we accepted. It was actually a pretty easy offer, and we were able to get what we hoped out of the house. So the rest of August was spent working on packing and starting to get things nailed down for the new house.
We did take time out to enjoy Declan's first birthday, which I hope to devote more time to in a separate post.

September
The craziness just kept on going. September 6 we closed on the sale of our house--yay! Having the house on the market for just over three months is really good for this market, and the closing was nice and easy (we didn't have to do a single thing to the house following the inspection). The next day we headed down to Louisville for Scott's sister's wedding, and were gone all weekend for that. It was a good time, but exhausting because Declan wasn't feeling his greatest. We made it through, though, and had a good time celebrating, even if we had to focus more on Declan than the reception and were concerned about getting home after being gone all weekend to pack.
Moving week, everything kind of fell apart, and looking back, I'm just amazed we even survived. We had to be out of the house by Thursday, so Scott was going to take Monday off to pack and take Declan to his cardiology appointment. Instead, Scott ended up with a fever, and Declan started getting worse, so I took care of Declan while Scott alternated packing and resting. Somehow through the help of amazing friends and family we were able to move our stuff, all while Scott still didn't feel the greatest and Declan was recovering also.
We thought we were finally in the clear  and could spend the weekend unpacking at my parents' house when I received a phone call from Scott at school on Friday of that week letting me know Declan was being taken by ambulance to the hospital because Sally, our daycare provider, thought he was having febrile seizures. The long and the short, after a weekend in the hospital and a 24-hour EEG (at least I think that's what it's called), not to mention my first ambulance ride, we think it was a combination of being sick and extreme reflux that caused a seizure-like response in him due to pain. He did test positive for a flu bug. So far we haven't had any more problems, so we're crossing our fingers that it wasn't seizures and they won't happen again. Oh, and he also had four teeth pop through within a week of each other, so this could have contributed to the issues, too.
Somehow after that, we managed to make it through the rest of the month and they started work on our house!

October
This month went much more smoothly overall (either that, or I've learned to tune out all of the bad things.) The house building has gone well, and they have worked really hard on it. I had two weeks off for the new balanced calendar, which was nice. Declan had hand surgery the first week of break, which amazingly only took about an hour and we were only at the hospital a total of four hours, start to finish (hopefully I'll post pictures soon updating this, too). Then he had a GI scope the next week to check his reflux and potential other isssues (which turned out pretty well overall) so it was a busy break. At the end of the month, we celebrated Callum's third birthday!

November
Nothing major has happened so far this month, which for us is quite exciting.We've been plugging away at picking out things for the house and checking on it. My goal is to update this at least more often than once every four months so I don't have to do such lenghty posts just to catch up.

Summertime and Surgery

Brotherly love

Here it is, late June, my summer is almost half over, and I feel like I haven't even processed it starting yet. Hence the usual slowness for updating. Declan has hit the big nine months, although at this point, he's already almost ten months old! We're still seeing good developmental improvement out of him, and I have been able to add a few more foods back into my diet, which is great. I've even gotten to go out to eat for the first time in over three months, so that was a huge deal for me! I definitely now have a new appreciation for people who deal with food allergies on a regular basis, and now know to be more aware and cautious of what ingredients are in our food in general.

Nine months!

On the downside, Declan had surgery last week, but on the upside, he's doing well overall recovering. For those unaware, this was a planned surgery--he has had bad kidney reflux (Basically we've learned gravity just doesn't work on this child--he has been dealing with both that and acid reflux. So we know never to hang him upside down or everything will probably fall out!) and had been on antibiotics for the last six months to avoid getting UTIs in hopes he would grow out of the problem. Unfortunately, the meds weren't working well enough and he's had several bad UTIs--his most recent one was a strain the hospital hadn't seen in about five years, which is saying a lot since they're the third best pediatric urology department in the country. Plus, a recent test showed he hadn't grown out of the problem at all. He had the surgery last Thursday morning which took about three hours, and after dealing with a rough night of him being in pain, he recovered well and got to go home on Saturday. This was the shortest hospital stay we've had with him, so it was rather odd (but good!) to be home so soon. He had a stent (drainage tube) coming out below his incision that was taken out yesterday, but other than follow-ups, we're hoping the surgery has taken care of the problems and he can be off of antibiotics completely in a few months.

Pre-surgery

All fixed and sleeping

standard hospital life

crazy sleeper

back to the good life

Not to leave Callum out, but he is as busy as ever. My parents are working on having an extra garage/barn built, and he has had a lot of fun playing in the dirt piles. Today he got to watch them unload the supplies--he loved it because he got to sit in the cab of the semi and pull the horn and was also able to sit inside of a little scoop. Also, while Declan was in the hospital, Callum went on an adventure with my brother and got to ride the Thomas train. So we'll probably be hearing about that for the next six months.

Oh, and because we've been a bit bored around here with nothing to do, we've also put our house on the market. We have always talked about eventually buying land and building. We figured it would be in a couple more years, but the timing works out best right now, so we put our house up for sale at the end of May. Yes, we're crazy, but I just remind myself that when we're sitting in our new house that we completely chose, it will be worth it. We close on the land next week, and we have a builder picked out and ready to start the blueprints, so all we need to do is sell our current house. So if you're looking for a new home, let us know and maybe we can work something out :).

First time swimming!

Plugging Away

Happy Baby

It's hard to believe it's already May. As a teacher, I'm usually very cognizant of this month because I start to feel the push of winding down the end of the year. Maybe it's the four days of ISTEP testing, maybe it's the strange weather, or maybe it's the trying to keep up with a two-and-a-half year old and an eight-month old who has an entourage of doctors and appointments. However it's happened, it's almost the end of the school year and I haven't even begun processing it!
In general, it's been a pretty good last month at our house. Callum is as busy as ever, and in the last few days we've noticed his two-year molars popping through. He's done really well with it and we've hardly noticed. He was a bit under the weather yesterday and today, which meant me spending a night curled up on the chair sleeping with him. While it wasn't the most comfortable position, he's so rarely a cuddler that I didn't mind, except for his need to wake me every so often to tell me a story (which included everything from recounting everyone who went to church on Sunday to the fact that he got to see a monorail train on PawPaw's computer last week). Silly boy!
He did also hit his half birthday milestone. Since I haven't done a Hey Hey picture in a while, I didn't realize how difficult it would be to get one. Sitting still just wasn't in his vocabulary.

Speaking of milestones, Declan also hit eight months! He's up to 14 lbs, 1/2 ounce, and the doctor was really pleased with his weight gain. While he's still below the curve, he has moved up just a tiny bit. She said she would like to see better height gain, but Declan was screaming his head off while the nurse attempted to record his height, so I'm unsure of the accuracy.

So sweet--holding Squeaks's hand

Sitting by himself!

Otherwise, he's doing well overall. He's still in therapy (and will continue to be probably until he ages out at the age of three), but we're seeing some good progress! However small they are, I'm just excited to see milestones in the right direction. He's been eating some baby food--he's up to cereal, bananas, sweet potato, applesauce, and prunes and seems to like them all. I've been able to add corn back into my diet--yipee (if you think corn isn't a big deal, check out the labels next time you eat and see what all has corn starch or corn syrup in it)! I tried eating eggs, and that didn't go so well, so they're still out.

On Sunday we had Declan's baptism finally. Well, it was actually a recognition ceremony, but we'll consider it his baptism. He was officially baptized on Scott's birthday, right before his heart surgery. We didn't tell most people because 1) we didn't want to scare people in thinking the worst of the outcome of his surgery, and 2) we wanted people to treat his recognition like a baptism so he could have a normal moment in his babyhood. We actually tried doing this ceremony in November, but since most of the family was really ill, that didn't work out. It turned out beautifully this time!

Callum is working on his photography skills. He set this photo up all by himself and then pushed the button to take the picture:

Posing with Squeaks

 Callum's also a whiz with musical instruments. We'll be setting up his tour dates soon:

Random Easter pictures (we didn't get any good family ones--Declan was exhausted and hungry after church, and then we got too busy to go back and take ones).

 

Everyone always asks how Callum is doing with being a big brother. I think these pictures say it all: