Thursday, May 16, 2013


It's been over a month since I last wrote (not counting work related posts like this one). Typically I fall into dry spells because there's nothing to write about, but in this case - life has been so hectic that I just haven't had the time. Now I feel like my brain is overflowing with things that are worth documenting that one post won't be enough! Between selling our house, buying a new one, going on a honeymoon, scheduling surgeries for both kids, family photos, participating in the March of Dimes Walk - the list of things goes on and on and on.

As I sat down though the most important & ironic thing is the fact that my last post was about the loss of a dear family friend and the importance of spending times with the ones you love. Since then I sadly lost another family member due to failing health and my grandfather was rushed to the emergency room with internal bleeding. He has since been released from the ICU but the scare it created is something my family was not prepared for. Hopefully as we go through many other tests, everything will come back in the clear and we can stop worrying.

Since we're discussing medical ailments, I'll use this post to update on what's going on with the kiddo's and upcoming surgeries. We'll start with Will since he's easier. Will was born with a condition called cryptorchidism, more commonly known as undescended testicle, which affects 6% of all newborn boys and it either means that the testicle just didn't drop or it doesn't exist at all. Most of the time, if it's there, the testicle drops on it's own within the first year of life. In our case, that hadn't happened - which made me worry that he may not have two at all.

We finally had the much anticipated ultrasound and were able to locate it within his abdomen. I feel very relieved for his sake, however that now means we have to have surgery to bring it down.  Nothing is on the books yet, but we meet the surgeon tomorrow to get things in order.

So now for a regular update on Will:
He's already 9 months old! It makes me sad that he's growing so quickly, I wish I could freeze him exactly as he is right now. We had our 9 month check up last week and he weighs 21 lbs. 9 ozs. and is 29" long. He is the most mobile kid I have ever seen, considering he hasn't figured out crawling or scooting yet. He rolls all over to get to where he needs to be. That doesn't mean he isn't trying to crawl though and I think any day now he'll be on the move. He's still not in love with solid foods, but he loves the Gerber Puffs.

Onto Ella. As most of you know Ella was born with a unilateral cleft lip & palate. That means we have undergone many surgeries already, with an unforeseen amount remaining. Overall we have been happy with Ella's surgical path, however as she's grown - things have stretched and shifted, making us feel like she could benefit from another surgery. Our surgeon is conservative and prefers to wait until they are absolutely necessary so we have held off.

In the beginning of April I took her to a routine dental cleaning and learned that she had cavities within a few of her bottom teeth and the teeth in her cleft line could benefit from some work as well. The front teeth are extremely important to keep in a healthy state. If we were to pull them out (after all they are baby teeth) it would allow her bone to shrink even more than it already is, thus making a bone graft down the road more complicated. So, within a matter of seconds the appointment went from conversations of what prize she would get, to when we could schedule surgery.

I quickly got on the phone with our surgeon and was lucky enough to get into Cleft Clinic that same week. After our meeting the plan was set in motion; in addition to the dental work, we'll have a lip & nose revision, fistula repair and the tubes replaced in her ears. As you can imagine, speech development is also affected by cleft lip & palate, so we've been in speech therapy since Ella was 2 years old. Recently it seems like her progression is at a stand still and I have yet to see an improvement in the air escape or hyper-nasality. Therefore, in addition to the other procedures, we are exploring the possibility of a pharyngeal flap (P Flap) surgery to create a seal between the nasal & oral cavity. I have about 1,000,000 questions and have yet to decide the best way to move forward but the only real way of knowing is to undergo a nasal endoscopy again. We have done that once before and it was terrible. It consists of a rubber hose with a camera on the end being inserted into her nostril and down into her throat. She then has to be cooperative enough to follow their prompts to say certain sounds, all while we watch to see if the closure is happening. At this point we're leaning on having the scope again so that we'll know for sure and then get something on the calendar.

I had wanted to get both kids surgeries handled before the end of June, so that they could recover in a home that is familiar and comfortable to them (more on the house selling/buying in a future post), but as this continues to drag out - it doesn't seem realistic to accomplish it all. Wish me luck!

So now for a regular update on Ella:
She continues to be the most rambunctious, crazy kid I know. She ceases to amaze me with the witty things she says. Tonight at bedtime I was asking her to act like "my big girl" (we're having potty issues again randomly). She replied with, "Well dad wants me to stay just like I am, but I can't help getting bigger. I didn't make that choice! God did! Silly God." We had a great turnout at our 2nd March of Dimes Walk on behalf of Cleft Awareness (more on the walk in a future post) this past weekend. She loved spending time with her cousins and couldn't believe that we all had shirts with her face on them!