Three Year Appointment

Another whole year has passed and things continue to get better and better! No more developmental appointments since he rocked those for final time last summer, however, we still had our annual chest x-ray and surgical follow-up. X-ray went relatively smoothly. I couldn't stay in the room as I'm currently expecting (more on that later :) but Jonah was calm when I came back in and he was excited about getting stickers, so he was a bit dazed but relatively OK with the process. Surgeon said not only do the x-rays look great, but based on how things are going, no need to come in next year if we're feeling comfortable. We can still make the appointment and come if anything changes but otherwise he'll see us in two years!!! Yea!!!

As for Jonah's life, he started at an actual daycare center last spring (before this he had been in small in-homes) and I won't pretend we didn't have more illnesses. Seems like he caught every cold in the place and pink eye as well. However, no hospitalizations and no "scary" sicknesses, just the normal kid stuff with the exception of needing an inhaler a few times. We spoke with his pediatrician about it as he was on/off it for about 4 months this winter, seemingly when he would get sick it would just be hard to shake without a bit of help. We agreed to wean him off it in the spring and he hasn't needed it since April so about 5 months and counting now. We'll see how this upcoming winter goes, he hasn't been diagnosed with asthma but it's a possibility.

OK, on to the other exciting news, Jonah is going to be a big brother! I am due in two weeks and was being followed by high-risk perinatology with ultrasounds every month. Every one showed no evidence of anything amiss and as of 32 weeks, I've been given the all-clear to follow a normal pregnancy schedule from here forward.  I took progesterone shots weekly to help prevent preterm labor (Jonah was born at 34 weeks) however, my perinatologist thinks there's a good chance Jonah's prematurity was due to his birth defect and since I'm 38 weeks now, I would tend to agree.  I'm loving this "normal" pregnancy stuff, no complaints from me!

A few photos from this summer, Jonah is just an absolute joy and getting sooo big!!!

Two Year Appointment

In some ways I can't believe it's been two years and yet at the same time it feels literally a lifetime ago we were in the NICU. We're blessed beyond reason for how well Jonah has done and I feel guilty to admit that most days I don't even think about CDH, or his rough start, or anything other than enjoying him growing up faster and faster each day. He now loves to play on the playset out in the backyard, run after our friend's dog, and talk up a storm. We're even taking a few tentative steps towards planning for a sibling for Jonah.

But, since this is a CDH blog, I'd better get on with the update for that. For the first time I booked both our standing appointments for the same day. Remember Jonah goes to the surgical clinic once a year and the developmental clinic twice a year. This June, I set both up for a Friday and hoped he would stay in a good mood. Developmental first just in case things turned south.

The developmental appointment went well last time and I anticipated the same thing time around. I had even asked if we could be done after this appointment though I suspected we'd be asked to come again at 2.5 years and 3 years of age. But seeing as he was scoring at and above his age equivalent in everything and seeming to learn faster each day, it seemed a bit unnecessary. And, as it turns out, this was his graduation day, no more developmental appointments! They said he was as advanced as a three year old on most things (wow!), particularly comprehensive language. All the therapists were honestly just thrilled and so impressed! They even told me to have a discussion with his daycare center next week about how they'd need to keep him challenged so he doesn't get bored because he's so smart. Yeah, sure that would be popular and forever mark me as "that mom".

Then it was on to the surgical appointment. He got chest x-rays first thing and did fantastic! He sat in this little chair up high and got all strapped in. He was so calm and good they didn't need to do the head and arm straps which helped a lot. Then by the time he got upset it was nearly over. The surgeon looked at the x-rays and said everything looked good, took a quick peak at the scars and said they were A-OK and listened to his chest. It was over very fast and AJ even joked that it was pretty quick considering how big the bill would be. But of course we're delighted that things are going so well. They want to see us back again next year and after that we'll consider stretching out the surgical appointments a bit. There's no hard and fast rules, someone with CDH can reherniate at any time, but we'll stay optimistic but also remain cautious. Being more used to these appointments now, we know better than to ask if this or that will happen in the future, there's just no guarantees. We'll continue to monitor things and take it one day at a time. But, all in all, I just can't think of a single thing I'd want different. And what a wonderful blessing that is!

I may not update this blog anymore, I find I've run out of a whole lot of CDH things to specifically write about. If there's every anything more, I'll pop in...or maybe just to brag on my boy a bit more...but otherwise, enjoy a few more photos.

Those darn grandparents like to feed him way too much chocolate!

Mom prefers the natural sugar! Strawberry picking fun!

1.5 Year Checkup

Merry Belated Christmas!!! We had a fantastic Christmas here with lots of visiting with family and friends, a beautiful Christmas service and lots of very noisy toys...thanks grandparents! :)

Wow, amazing to think that another 6 months have passed. Jonah just completed his 1.5 year developmental follow up. We again had occupational, physical, and speech therapists there, along with a nurse and a neonatologist. All said Jonah is doing fantastic! We're definitely going back at the 2 year mark but then may be done or may be asked to go back at 2.5 and 3 years. I'm hoping we're done, I'm confident Jonah is hitting all his milestones somewhere between his adjusted and actual age and in some cases is far ahead of of his goal. Here are the results. Keep in mind we're shooting for between 18 months adjusted or almost 20 months actual.

Cognitive (play skills) = 22 months
Fine motor Skills = 25 months
Gross Motor Skills = 20 months
Receptive Language (understanding) = 21 months
Expressive Language (talking) = 19 months

It's funny how much things change in 6 months. After the 2.5 hour appointment we went out to the Cheesecake Factory for lunch just the three of us then visited dad's work on the way back to our house. We wouldn't have dreamed of doing this the first time we went at 6 months or probably not even at a year due to napping schedules and germs. Things are so much fun!

I forgot last time to write about his surgical follow-up, which we'll do annually for a while. He had a chest x-ray and the surgeon said things look good. The fact that he made it through is first winter without any breathing treatments or rehospitalization means we're probably in a good spot as far as his lung function and we just have to watch to make sure he doesn't reherniat. We scheduled the next one for the same day as the developmental assessment, so that will be a long day but then we're potentially done for a whole year, yea!

As for other doctors, Jonah's regular pediatrician is delighted with how he's doing and we'll just be seeing him for regular well visits. He actually said at his 18 month checkup that you'd just never know he was a preemie. He weighs 28lbs now and weighs more than 70% of babies his age and is taller than 90% of them! Jonah's pulmonologist says no need for any more appointments unless I want one and he recommended no RSV shots this winter. Wow, who would have thought we'd be so blessed!

Just a few more photos, he's just a wonderfully happy and healthy little boy.

First time in the snow, have to love winter!

Last year might have been his "first" Christmas, but this one was a ton more fun with Jonah opening gifts and actually getting excited about the toys!

One year developmental checkup

We had Jonah's 1 year developmental appointment yesterday at Children's Hospital. He was due June 2nd so they schedule it close to that rather than his actual birthday in April. They again measured him on the Bayley scoring, asking him to perform certain tasks (in a fun way) and seeing what he could do. He enjoyed it overall as the physical and occupational therapists bring toys with them :) Speech just mostly observes and asks us questions. It took only 2 hours this time (as opposed to 3 hours for the first apt).

His measurements are:
Gross Motor: 12 months
Fine Motor: 13 months
Receptive Language (understanding): 14 months

Expressive Language (talking): 13 months

Cognitive (Play skills): 15 months

Excellent considering we were shooting for 12 months! He's actually just under 14 months based on his real birthday so we're happy he's at that level for some of the skills. We'll go back in December for another round of testing and then I think only one more when he's 2 years old.

While we were there we also got everyone's blood drawn for two research studies on CDH. One is called DHREAMS http://www.cdhgenetics.com/ and the other is called CDH Study at Children's Hospital in Boston. Both will be studying our DNA to help them identify the cause of CDH and potentially find a better way of treating it in the future. A bit of a pain and it took over an hour to get it sorted out but in the end we did walk out with the vials of blood that I'll send FedEx to the researchers.

Jonah is so much fun! He started walking about a month ago and now toddles around everywhere. We've moved our childproofing up to the three foot tall level (and learned to be on the lookout at anyone else's house :) He babbles all the time and loves to play catch and be tossed around by dad. Mom is good for cuddles when he's not feeling well, which he's not right now. He has a cold (or something) and coughs constantly. We've been assured its nothing to worry about, it just isn't any fun for him, especially since he's also cutting three teeth, two of which are molars.

On another note, my husband and I are celebrating our 5 year anniversary today. Looking forward to another 75 years or so! :)

Here are just a few recent photos, we sure are loving the summer months! Jonah isn't too sure about the grass some days but he loves being outside! Other days, he eats everything in site, grass, dandalions, flowers, bark and more :)

Our water table is another big hit, and we can hide in the shade during the hot and sunny part of the day.

And yea, no more baby food for Jonah! He loves eating big boy food, from spaghetti to just about anything else (except vegetables, which he's boycotting right now). We're not quite done with bottles yet but he does like a sippy cup of water.

Birthday Boy!

Jonah is one year old! Who would have thought a year ago that we would be able to celebrate without any tubes, wires, or worries! (well, aside from the fact that grandpa is going to feed him chocolate non-stop). He's into everything now, crawling lightning fast and cruising around furniture or using a push toy to get around the house walking too.

We went in to visit a pulmonologist at Children's back in February since our new insurance company denied RSV shots after the first of the year. We got all our documentation laid out and the insurance company decided he was elligible, score one for our team! I highly recommend appealing a decision if you don't believe it's the right call, we've only had to appeal two things but both we eventually won with persistance and documentation. Of course, we missed one month of the shots while I was arguing with the insurance company, but luckily Jonah didn't get sick. We've been really lucky this winter, two colds and an ear infection and that was it. Praise God!

Jonah had his one year checkup and since RSV season seems to be over he had a completely normal little boy schedule of shots. Four shots along with all the regular measurements, etc. He's gaining nicely on the growth chart, up to 42% for weight and 73% for length, and that's based on his actual age, his adjusted age will look even better!

We'll go in for another developmental assessment at Children's in June to measure his one year skills by occupational, physical and speech therapy. We'll also get another surgical follow up to see how his diaphram and lungs look. Wish us luck! Until then, I'll share some of Jonah's one year photos taken by the very talented Heather Beach Photography.

Can you see his abdominal scar? Yeah, barely!

6 Month Checkup says he's good at "everything"

Last Friday Jonah went for his 6 month developmental assessment at Children's Hospital. They schedule based on when he should have been born, he's actually 7.5 months old now (can you believe it?!?). He had basic height/weight/head circumfrence checks by the nurse and a physical by the doctor. But, new this time, he met with Physical Therapy, Occupational Therapy, and Speech Therapy. He was assessed on the Bayley score, where they try to have him do basic skills and give points based on that, ultimately giving us an "age equivalent". It was a looong appointment at nearly 3 hours long (have you ever tried to keep a 7 month old happy/awake/not hungry for 3 hours? not easy!). But, in the end, they gave us Jonah's very first report card, pronouncing him good at "everything!!". His motor skills are at 7 months for gross muscles and 8 months for fine muscles, great since we were aiming for 6 months! His mental scale is at 7 months and his expressive (talking) score is 7 months as well.

The only place he ended up being below his adjusted age was receptive (understanding) at 5 months 10 days. I wasn't aware but many babies "recognize" several words by this point. The speech therapist tried to yell "no" at Jonah and he didn't respond. Not surprising since I don't tell him no, until he learns to crawl, what can he really do that's naughty? She called his name and he responded, but only when there wasn't other distractions like a toy. She tried "up" and "bye"...no response. So, we'll start working on that, but she said she wasn't really concerned since he did so well everywhere else, she knows he'll catch up and doesn't recommend any additional help or therapy. They told us to make an appointment for when he's one year old and just keep doing what we're doing.

Other than that, we're just enjoying life. I'm off work this week of Christmas but will be back working full time in January. My mother-in-law is super-sweet and continued to watch Jonah 2x of week all the way through last week but will be taking the rest of the winter off, its a long cold drive out here each day and the roads are not always the best.

Jonah continues to be an absolutely amazing baby. I absolutely love this age! I started saying that about three months ago, he is alert and likes to play peek-a-boo, he sits up and giggles uncontrolably when I tickle him. He sleeps through the night :) He's amazing...now if only he napped for longer than a half hour at a time....gotta run! Here's a photo I snapped the day after our six month developmental appointment, he's ready for Christmas!

Normal Life

It's so wonderful being a normal family and doing all of the normal things families do!

I go back to work this week, which I embrace for its utter normal-ness and the fact that Jonah is well enough for us to feel comfortable with him away from us, but of course have mixed emotions as any mom will. I planned to return to work on a Wednesday so that my first week back would be short. My mom and my mother-in-law will watch Jonah for the next month and he'll start at daycare in September. He'll only go twice a week and I'll stay home one day a week with my mother-in-law taking the other two days. We'll do that for a while and see how it goes, probably transitioning to full 5-day weeks at daycare sometime near the end of the year.

We also went and took Jonah's 3 month professional photographs. We just went to JCPenney's and on a weekday so there would be less kids around. So far I haven't had to worry about too much sickness but I know it will be a paranoid winter for me. They've told me its critical that Jonah not get sick in the first six months and it would be better if he didn't have any sickness that touched his lungs in the first year. It's promising to be a crazy flu season with H1N1 going around but we will try our hardest!

Here are a few photos of us enjoying the last bit of summer.

Daddy and Jonah out on the hammock on the deck.

Jonah in shorts and a T-Shirt, enjoying the last of the summer warmth.

Daddy and Jonah chilling along the edge of Lake Geneva where we went to take our first destination stroller walk.