Jack’s Big Break

Among the list of medical issues that Jack has, one is scoliosis. Unfortunately, this is an issue that regularly follows CDH and Jack is no exception. We knew of his curve at an early age due to all the x-rays he was given. But, there were many other medical issues that needed to be addressed first. Tracheal reconstruction, bowel resection and coarctation – not to mention the repair of the hernia itself. It took a while to get to the non-life threatening repairs. One of the most recent being his hip surgery and subsequent spica cast. But before we went to see his doctor for his hip, we had to see his doctor about his spine. This is when we heard that Jack’s curve was severe enough for a Mehta cast. This is a cast similar to his hip cast in that it is a plaster cast used to immobilize him as he heals and grows. There would be no cutting involved in the surgery, but they would have to put Jack to sleep and straighten his back before casting him. He would then get a new cast every couple of months as he grows.  But since the hip surgery was more pressing, that would happen first.

Following his hip cast, Jack was given the physical ability to learn to walk – which he did in record time considering his set-backs. Since this past summer, he has been walking as his primary method of mobility and is slowing defining muscles which he had never properly used before.

We all went back to the orthopedic surgeon’s office this past Friday to discuss the next steps in Jack’s great body make-over. More x-rays were taken and we sat in the waiting room and the exam room waiting to see the doctor and trying to keep Jack’s mind off the fact that we were back at the hospital.  And I do have to say that the first appointment of the day is by far the best. There really was little waiting.

The doctor came in and only took a quick look at Jack. He seemed to already know what he was going to say. Jack’s top curve had not changed overall from the x-rays taken nearly a year devious. This was good. The bottom curve, however had IMPROVED by nearly 10 degrees. Evidently, the use of his back muscles to walk had strengthened enough to straighten his back a little. Not only will Jack not get his cast, the doctor wants to give it another 6 months. If the curve continues to improve, he won’t be getting a brace either!

Taking Life By The Short Hairs

I am currently reading a book titled What The Most Successful People Do Before Breakfast by Laura Vanderkam. I first picked up the book looking for a little pep talk about getting up earlier in the morning before work and allowing myself to be more prepared and less rushed before my morning commute. What I am receiving however, is a book full of small changes that I can make in my life to get more value out of my time.

One suggestion is to take the weekends as a time to live life rather than a time to recover from the long and busy work week. Sure, recovering is great, but you are missing a small piece of your life which is set aside for living and recharging.

The author breaks the book into sections of the week; before breakfast, on the weekends and at work. In the section entitled, “What the Most Successful People Do on the Weekend: All There Is” She recalls a story idea about “Simplifying Christmas” in which the narrative shares that you don’t have to bake, throw parties and curl ribbon during the holidays. You can simplify this festive time to allow for relaxation. And though she agrees that there is no reason to fill this time with tasks that won’t bring joy or buying expensive gifts that nobody really wants, there is a value to all the holiday hoopla.

“But if you’ve got young kids, it doesn’t take long to realize that there won’t be many Christmas seasons when the little ones will race downstairs in the morning to see what Santa brought. They won’t always be eager to bake with you, spilling flour on the counter in their excitement. Eventually they won’t care if you don’t put up a giant tree or go caroling or make hot chocolate. They’ll allow you to beg off making a snowman because you’re tired. But there are only a few winters – and only a few days each winter when it’s snowy and you all are home together – that you children will ask to make snowmen with you. Someday, perhaps you will be staring at the snow from a too-simple hospital or nursing home, dreaming of the days when making snowmen with your children was an option. This realization leads to a different question than that suggested by all these tips on simplifying the holidays. Namely, what are you saving your energy for? This is all there is. Anything could happen and you are not guaranteed another snowman. So make a fuss. Make a show. Spend your energy now.”

Matt and I are making great progress on the house and are spending most if not all of our weekends to make head-way. I feel like Jack is growing up and I’m only watching it in the photos I look back on during the week while I am trying to stay focused at work.

We need to find at least one activity a weekend which we can spend together, having fun, relaxing and growing together. Even if it’s just a relaxing movie on a Saturday night, or a Friday evening in the park watching Jack act like a baseball prodigy. We will still get the backyard cleaned up and then we will be able to relax in our safe backyard oasis in the evenings – even during the week when a little time spent sitting and just talking is the most beneficial.

“You can make more money, but the mightiest among us is granted no more than 168 hours per week, and it is physically impossible to work for all of them.” Laura Vanderkam, What the Most Successful People Do Before Breakfast

Swimming Jack

 

Jack’s Mega Party

I was chosen to be a HouseParty Host of a Mega Bloks First Builders Block Party!

If you are not aware of HouseParty, check them out at www.houseparty.com. They are a company that teams with other companies to bring new products to you to test. If you are chosen as a HouseParty Host, you are sent the new product, throw a party using the product with your friends and family, and evaluate the product on their website and other social media sites.

So, back to the party. I signed up and was chosen to host a party for Mega Bloks in which I would be sent a package of new Mega Bloks toys to share with Jack. The package contained a Billy Beats Piano, Blok Buddies and two Block bags.

Matt and I hosted the Block Party on November 10. Since Jack is on flu restriction and is not allowed to be around children, we hosted the party with only adult family members who had been healthy and had their flu shot.

I brought out the products for the first time during the party and Jack’s face lit up. A party with toys?! This is the perfect day for a two-year-old. Jack loved the bloks and the Blok Buddies though I think he is still a little uneasy about Billy Beats. Well, have to work on that. This is the first piano he’s had that also dances….

group 1 group 2 Jack and Granny Jack and Mommy Jack Granny and Mommy Jacks grab and go Jacks pile Jack's reach sleepy Jack

Happy 1st Anniversary, Jack

March 21, 2013

Jack,

Today marks one year since you were brought home from your long and tumultuous beginnings at Children’s Hospital. Though you had a home in my heart from the first day I found out I was pregnant, you had finally settled into your own space in our family home. Even with all your medical equipment, it felt so natural for you to be there, with us. Though I had my occasional doubts and fears, I always knew that you would choose to be with us. I could see it in the way you looked at us through your squinty eyes after those first few days on ECMO. Or when you would give us a sheepish smile when we walked to your bedside though you were in obvious pain. And especially when you were well enough to get out of bed to play and laugh with us.

Today, I find myself thinking about all that has changed in the past year. It shows in every aspect of my day. For starters, today is a blustery 35°F…Last year was 82°F. Today, I am spending most of my time on Excel, last year was the second day of a two-week leave from work to spend time with you. Last year, you were coming home on continuous oxygen, with continuous gtube feedings and an ileostomy bag. You were fragile and scary and I was intimidated and unexperienced. But, today you are oxygen and ileostomy free. You are eating half of your calories by mouth and getting scheduled boluses by gtube. You have no tubes or lines that we trip over. Now-a-days, we travel with only one diaper bag. And you have grown into an intelligent and independent young man. You amaze me daily with all the information you process and demonstrate through your signs, words and actions. You are becoming a boy with ideas and desires and demands.

But there are also things that have not changed in the past year. You still look at your Dad and I as if we are coming to rescue you from world-ending boredom. You are excited when we walk in the door and greet us with blown kisses and an excited shriek. You still have that determined look in your eyes when you attempt something new and make discoveries.

And you still have that home in my heart.

You have made my world into a place where it will all be okay at the end of the day, no matter how the day starts. Where reading The Hungry Caterpillar for the 40th time is still exciting, and cinnamon animal crackers could fix all the world’s problems.

I have thoroughly enjoyed this past year learning who you are and am looking forward to spending the rest of my life seeing who you become.

I love you,
Mom

A Visit to the Cincinnati Zoo Festival of Lights

photo 1If you ever want to see an infant completely amazed and guarded all at once, take them to the Cincinnati Zoo Festival of Lights. Jack (and I) was fortunate enough to visit the zoo on Monday night to enjoy some unseasonably great weather, a handful of never before recognized animals and an impressive collection of orchestrated Christmas lights and music.

We went after work, that matched with the beautiful weather, we were bound to run into a big crowd. For this reason, I thought a box of cookies would be a great little snack while we waited; but of course in classic ‘Kaytee’ style, I burned them. They waited in the car for us. The line was actually tolerable and Jack was in good spirits so everything was a-okay. We were even given a half-off admission coupon in line from the couple ahead of us. How nice.

photo 2Jack was all over amazed at the lights that danced with the music. And the train passing by was a nice little treat. We made our way past the Skyline hut (after a little stop to gobble down some coneys and “carefully” feed Jack some chili and cheese) and headed to see the elephants. I’d have to say Jack wasn’t all that impressed. I think he was more entertained that I was letting him stand on the concrete knee wall before the protective glass. Simple pleasures…so we moved on to the aviary.

photo 3The first room in the aviary was full of smaller birds which were decently quiet. My dad started a one-sided squawking conversation with the birds and Jack followed with some grunts and growls. He was very entertained by this and continued his bird calls into the next room which housed some bigger, louder and more mobile birds. After only moments in the second room, Jack kept his eyes on as many birds as possible and sealed his mouth. He didn’t look scared as much as on alert and ready to demand retreat if it was necessary. But we would leave soon since the humidity in the Australasia Aviary was quite high.

photo 4After an unfruitful search for awake monkeys, we started for the front entrance. It was 10pm and we were slowly being pushed out by zoo security.

I can’t wait to get season passes next year to the zoo. I think Jack will be old enough to really appreciate it and will also be a little more healthy to stay out in public for longer periods in the winter months.

Scanadu Medical Tricorder: Measures Vital Signs In 10 seconds

Take a look at this little guy. Doesn’t look like much, but if you have a sick infant and you know its capability, you will be as excited as I am for its release.

I received this article this morning from Fast Company which prompted additional research. Fast Company reports that when this little device is held to your temple for 10 seconds, it will read your vital signs, including temperature, ECG, blood oxygen saturation (SPO2), heart rate and breathing rate with 99% accuracy. They quote co-founder Walter DeBrouwer, “It lets the consumer explore all the diagnostic possibilities of an emergency room.” But as any CDH parent knows, they are not just vital signs that we need to know in the emergency room. They are vitals that we need to know everyday, sometimes several times a day and can let us know if an emergency room visit is necessary or not (we have gone on two emergency Emergency Department visits since August).

Sounds great, right?! Do you want more? Of course you do. To make the device more consumer interactive and educate the average consumer about these important vital signs, the data is collected and sent to a free app on your smart phone which records all the readings into a color coded rating system. And the researchers and developers are also working on a system that will allow users to send data to their doctors.

I am imagining it now.

scenario #1: We pack up a diaper bag which is carrying the Scanadu. We leave the large pulse oximeter at home and head to Cincinnati Children’s Hospital for Jack’s High Risk Clinic appointment that is scheduled every other month. The nurses already have his vitals for the previous two months which I had sent to them earlier in the week. The first 30 minutes of the appointment is not consumed with talking about his trending vitals. That is already taken care of. We can focus on his improvements, areas of concern and plans for the following two months.

scenario #2: A similar scenario to an ED visit back in October with a twist. Jack is getting some kind of cold. It is 2am and he is coughing and having breathing complications. He is kicking and crying too hard to wrap the pulse oximeter around his toe. Even if we got it secured, he would kick too much and the meter would not get an accurate reading. Before we load up the car to head to the ED, we take a quick 10 second reading with the Scanadu, get all Jack’s vitals on my iPhone and head to the car. When we reach the ED, all the information that they require before treatment is already together. Though they will still measure all his vitals, they always ask and I hate not having an answer. “Well, the pulse oximeter wasn’t working so I don’t know his SPO2 but his lips weren’t a deep blue and I don’t think it’s TOO low.”

Oh, the futuristic idea of being less stressed about my baby’s health. This has put me into a great mood.

Keep an eye out for its public release scheduled for year-end 2013 with a price tag of around $150. A small price to pay for added security and peace of mind. And if you want more info, check out their website Scanadu.com. There, you will find trailers, news and a blog. And ‘Like’ them on Facebook for updates.