See the Good in Everything

We have hit our "follow-up" window and met with Speech and GI this week. Tomorrow we should get a swallow study date, so let's recap what has happened in the past two months: - Eating/ drinking went INCREDIBLY well after the gel fill!!! - Three weeks ago, we got a little flu bug- puked once, then puked a week later from what I can only assume was a lactose intolerance (this is common in small kids and Caden had it last year after getting a virus). So we are on a lactose free diet right now and have yet to re-gain the eating/ drinking momentum that he had before, and even taking this into account, about 1.5 months after the fill the eating started slowing down. It sounds crazy that I can make that statement, but when I have a notebook that shows everything the kid eats/is offered/refuses- it is sort of hard to argue.  - GI confirmed again that they would like to do a scope on him. Being on reflux meds as long as he has, they want to see the extent of any acid d

So our big adventure is over, and yet it has really opened up another big chapter of unknowns! We discovered that Caden does in fact have a Posterior Cleft, a slight one, and he had the gel film injection and we stayed over night after his scope. Everything went well and after a cranky awakening from anesthesia he inhaled (and that isn't even he correct term) noodles and ice cream and enjoyed the play room on the children's floor. The amount of questions I have are enough to fill several volumes of encyclopedias, I may be dating myself there as generations these days have no idea what I am referring to! But here is what I DO know: - The cleft is rare, as I said before 1 in 10-20,000 kids are estimated to have it and boys tend to show more than girls at a ratio of 5:3 - There is very little research that I can find, and the research I CAN find is medical journals that were forged in the cold, dark depths of Hell where the Spice Girls wrote their most famous ballads and t

That looks like a bunch of medical jargon- basically- the back of the throat isn't formed like it should be. There are three different stages, I, II, III & IV- III being the worst. (powerpoint) Caden will be under sedation, but breathing on his own and they will look at his throat to see how everything looks. If they see that he has the cleft- they will fill the extra space in with a temporary gel film. This film will last 2-3 months. In that time they will make sure that he tolerates the gap being filled (as it should be), and then he will have a permanent surgery to have the space filled. This is the suregry that worries me most, and that I have yet to to start researching because just writing about it makes me quiver. Preliminarily, I *think* he will have to be intubated a day or so just because of what they are doing (sewing his airway up)- and that scares me in ways that there just aren't words for. I am not even going to look at that mountain until I know it i

Therapy was scheduled, and the date loomed closer. Everything else seemed to stay as status quo as it had been. Caden and I seemed to have our own life separate of that from daddy. It is easy to look at this life and know that something is off, it is harder to see when and how such a shift started to occur. Perhaps that is part of the issue. Someone is always looking for one event, or one blame- it is just what society has engrained in us- there is always a right and wrong. If something isn't working, then there must have been someONE that isn't holding up their end. It was/is both. It has become easier to continue living in this fashion than to face the problems in our life. I long for family time, affection, the spark that was once there and a comfort knowing that I am not facing these fears of doctors and tests alone. I feel like a roommate, as if I am here solely for a sounding board regarding work issues or venting purposes, and it is a one way street. When it comes to

I suppose it goes without saying that it has been a while, though I still feel the need to open with that excuse. It is like a part of me that has to apologize, because the thought of writing is a constant buzz in the back of my mind, yet there is just never that extra hour at the end of my day to get my myriad of thoughts into a logical place and out of my overflowing head. So in an attempt to release the growing tension between my ears, shoulder blades and recurring nightmares- I am making the time now. So much is happening- as is life everywhere. My little boy is nearly TWO ! When and how did my little 6lb 4oz Squishy grow into such a bundle of nonstop energy? The vocabulary and understanding that he has is something I am fascinated by everyday. I find myself watching each word that comes out of his mouth, and while daddy was the first one to get a bad repeat, luckily it wasn't one that stuck. He is so kindhearted and funny, caring and witty, intelligent and ornery- I could

At the risk of sounding like a complete ass, I will demonstrate this day with two perspectives (this also shows that I DO in fact know how the others involved see the events- I just don't get how these events were allowed to go on...) I don't really recall Mother's Day 2013. I am sure I could go back and read about it, I do recall getting flowers (EXACT same ones as the in-law << Big NO-NO) , but I know the day wasn't anything special- enough that the husband even noted this year that he knew he had been slacking. (Expectant) Mother's Day 2012- I had date day with my dad and Uncle T sent me flowers from his stint in the Marines. The response from the husband, "well you aren't a mom yet so why would I do anything for Mother's Day? " So we can all see that this day had a reputation already, and it wasn't the Hallmark commercial one... 7:00am- ZZZZZZ "ATTENTION FIRE DEPARTMENT!!!!!" yes that was my wake-up call. Out the door th

In six short months I will be the zookeeper of a two year old! In reality that is what I should be called.  Next week will be his 18 month check-up. Our favorite doctor moved to Chicago- I briefly considered looking into relocating- I liked him THAT much! Good pediatricians are hard to find. The one we are seeing isn't that bad, he just isn't my first choice. After the last swallow study, it just makes me nervous and full of questions as to the best course of action. In other development news, we have transitioned quite nicely to a big boy bed, loves to brush all six (OK only four are actually visible) of his teeth,  he knows the joys of a timeout chair and he still hasn't kicked his dogfood habit. What is it with the dogfood!? See, I am truly a zookeeper! I am going to remember this obsession when he gets older. Now that the weather has started to consistently stay nice, it is a challenge to get him inside! He loves bubbles, balls, his four Wheeler, chasing the puppy an

A week (or two months) late and a buck (or closer to two thousand) short. I started this blog a while ago, like during the actual Feeding Tube Awareness Week (Valentines Day), and obviously time has yet again flown by. To celebrate Feeding Tube Awareness week, and Heart Day- we visited our friends in Radiology and had a Swallow study! Probably our most traumatic yet. Not because it was painful or horrific, but because trying to get a toddler to do anything is like getting a cat to voluntarily bathe or a man to administer his own pain injection for a vasectomy.... Thank goodness for patient nurses, radiologists and therapists- also for the amazing technology that is BigBlock SingSong. After attempting to get him to sit on his own, I finally had to hold him while a nurse held my phone and a tech held a variety of rotating light toys and his cars while the therapist tried to get him to eat and drink the various varieties of food/liquids. I was somewhat opposed to the study to beg

Sixteen Months in, and I think that the reality is NOW setting in that this kid is 100% BOY!  Sure, I saw the ultrasound, I picked out the blue shirts and the Nemo decor. We trimmed the winky down and gave him his late grandfathers name, but NOW as the though of chasing him through the house exhausts me, I realize the meaning of having a little boy. The kid goes non-stop, he pauses only to consider what else to destroy or climb. The sitter has her couch in the middle of the living room since he decided the window between the living and kitchen would make a nice crawl space and he tried to dive into the kitchen sink. He has been found standing on the piano (yes, STANDING on the keys), he climbs in and out of the bathtub, up and down stairs, all over couches, under chairs and over any object that looks like it is mount-able (and even a few that are not-so-much). We are in the midst of transitioning to a hard topped sippy cup, and some days are better than others, still have four