Monday, November 16, 2009

The Weight



We had originally planned to head back to North Carolina at the end of December to prepare for my procedure in January with Dr. Natale at Texas Cardiac Arrhythmia Institute. While I have had this problem for years and years I was pretty much able to go about my daily life without anyone being the wiser. I might have complained that I was 'having a bad heart day' but did not often find myself benched from most of the things I enjoyed to do. Then I had a baby (who is so sweet, don't you think?!). My threshold for pain/exhaustion that I once maintained has been getting lower and lower. I now find myself pausing before doing the simplest of tasks to make sure I can physically handle it. A few weeks ago I decided that I should stop in to see the Doctor on Base who manages my care while living in Japan; just to let him know how I was feeling. He very strongly advised that we get back to the States as soon as possible. The hospital on Base is not equipped to care for a patient like myself. It is next to impossible for an American to receive care from a Japanese Hospital. There are so many different flus going around and the Doctor said that if I were to get sick, with my already compromised state of health, that I would most likely need to be hospitalized. SO... we decided it would be best to head back home a few months earlier than planned. One of the things that worried the Doctor on Base was the fact that I have been loosing weight. Last month I lost 11 pounds... without trying, without changing my diet, without any real physical activity. My heart just races All. The. Time. I guess it is starting to take its toll on my metabolism. So when the doctor told me to eat as much fattening foods as I could, I was totally on board with that prescription! I love to cook, I cook every day. I do try to cook healthy, and still am, I just have added a few treats to my daily routine!

Finally, this heart condition is starting to look up!

I discovered this recipe today and quickly made these while Noah was napping. He woke up just in time to lick the spoon. I had to have gained at least a pound today! (dinner consisted of homemade bbq bacon cheese burgers. gluttonous.)

No-bake Peanut Butter Chocolate Oatmeal Bars


3/4 cup butter
1/2 cup brown sugar
1 teaspoon vanilla
3 cups quick oats
1 cup chocolate chips
1/2 cup peanut butter

In saucepan melt the butter over medium heat. Once melted, add the brown sugar, vanilla and oats. Stir. Warning: it is a sticky mess.

In a microwave safe bowl add the chocolate chips and the PB. Melt in microwave on medium heat, stirring occasionally so the chocolate does not burn (this would be heartbreaking).

In a greased 8x8 pan, add 1/2 the oat mixture, pressing it down firmly. Pour the chocolate mixture over the oats, reserving some to drizzle on the top. Add the remaining oats, lightly press down. Drizzle remaining chocolate.

Place in fridge for 3 hours before cutting.

For your safety, eat with a glass of milk:-)

*before you go and think I have mad food photography skills, I must admit I stole this picture from another bloggers website.




Thursday, November 12, 2009

Back in business... sorta



Let's see... it has been about 7 months since my last post. I started this blog as a way to keep our friends and family back in the States updated on the various adventures we are brave enough to embrace while living in Japan. But let's be honest, I basically talk about NOAH! And who can blame me, he is a pretty charming subject, offering plenty of subject material. But about 7 months ago we had a bit of a scare with the subject of our affection; there was some concern that Noah had a condition called craniosynostosis.

Exactly... what?!

The nutshell explanation of this condition is this: the skull is comprised of several different plates with open sutures between each one that allow the brain and skull to grow. Craniosynostosis is the premature fusion of one or more of the sutures. Depending on what suture is affected determines the type of cranio that you have. This was not something that was new to us; my nephew Jackman was born with sagittal craniosynostosis and underwent major skull reconstructive surgery to correct the problem.

Exactly... what?!

Unfortunately for some cases the only solution is a major surgery. The brain needs room to grow as it is meant to; not forced to grow in the area of least resistance causing an abnormal head shape, not to mention the increased risk of intracranial pressure. Jackman Michael Ellington underwent total cranial vault reconstructive surgery in February of 2008. Now, almost 2 years later, he is doing beyond fabulous! Anyone who knows Jack can attest to the fact that there is no stopping this fireball of energy, excitement and PERSONALITY! The point I am trying to get to is that although it is a scary thing to hear your child might have this condition, I knew first hand that IF Noah did indeed have this that he would be just fine... look at perfect Jack! Knowing that and living that soon became two different realities to me...

Cranio soon overwhelmed my days. When I was not taking care of/playing with Noah, I was worrying about/obsessing over his health.

Every. Little. Thing.

I was obsessed with taking pictures of Noah from different angles to try and capture the shape of his head. I would stay up for hours at night emailing not one, not two, not even three but FOUR specialists in the field with my concerns. Noah has had one xray, 2 CT scans and has had countless office visits with 2 different specialists. I could not bring myself to log onto my blogger account and talk about anything. What was I going to say? We still did not know for sure if Noah was alright. I could not bare to put into writing what we were going through. The emotion of it all was much bigger than any blog could cover. All of my attention and energy had to be put into worrying about Noah. Healthy, right?

And the verdict? To quote one of our favorite specialists, Dr. van Aalst of UNC Children's Hospital (who performed Jack's surgery) 'On a scale from 1 to 100 of severity, Noah is a 3. Do not worry any more, let it go, enjoy your son!' The suture that was fused on Noah was his metopic; the suture that runs up and down in the middle of your forehead. It is the first suture to close, typically in the second year of life. Noah's was closed by the time he was four months old. In children with metopic cranio, the forehead starts to take on a triangular shape, pointing out in the middle where the suture should be. In very severe cases it is quite obvious from birth. Noah still has a nice square brow line, but a slight 'ridge' running down the middle of his forehead. Part of my hesitance to write about this is that I do not want to come across like I think my child looks odd. To me, he is perfect in every way! The concern was the growth of his brain. I was also hesitant because I did not want people to know that he has a mild case and therefore critique every little nook and cranny of his appearance. Now THAT might be vain, but who wants people looking at their child, thinking something is wrong with the way they look?!

After our last visit with Dr. van Aalst in September I let it GO. Just like that! I stopped worrying, I stopped taking pictures of his head, I stopped searching the internet for journals, research, articles, anything that had to do with cranio! It was like the proverbial weight was lifted from my shoulders. I could get back to the business of being a Mom to my perfect, handsome, thriving son!

And back in business we have been, Noah is doing great.

I know what you are thinking... then what is the 'sorta' all about in your title, hummm?

If you know me well, you know I have a heart condition. As this post is long enough I will not go into great detail about what type/symptoms/prognosis etc. There will be plenty of time for those details later. I will be having a procedure (my fourth) in January to try and correct this problem that I have been suffering with since... forever. Instead of taking the unhealthy and obsessive route that I took with cranio I decided I should write about what I am thinking and feeling. While friends and family often ask how I am doing I never open up as much as I could or should. Even after those few paragraphs above concerning Noah I feel so much better; I want that for my heart as well!

So bare with me... there will still be plenty of posts about Noah. After all, he is my heart!


We are BACK says Noah! And I know some of you might be curious, so in the above picture you can see the ridge that I was describing, right above his nose. Isn't it the most perfect and precious face you have ever seen?!