Here and now...

Wow, how time flies enjoying just living life without surgery. Time has passed and now we are here. Here staring surgery in the face. Wes has a number of appointments and scans coming in the next few months that will determine the order of those surgeries. Wes has grown so much since my last blog post. Of course he has stepped into the role of big brother as a super hero would. As I type this, Cooper is cuddled up with Wes watching him play as Wes tells him to relax, because he is awesome. He has survived the first semester without his big brother. Ironically Wes looks most like Brandon and Cooper most like Chase, but their personalities are quite the opposite. Wes definitely had to adjust to not having his buddy here everyday to hang out with and keep him up to date on the best Minecraft mods. Their project for Christmas break is to set Wes up a YouTube channel. You can still find Wes dressed up as his favorite super hero, even though he does not need to dress up to be my favorite super hero. He is also still styling in tuxedos and bow ties on dress down Fridays and any other opportunity he has. On most days you can find him saving the world or conquering evil with his Marvel, Star Wars, and DC buddies in his bedroom floor. His imagination and love for playing is as strong as ever and with his expert knowledge of every super hero imaginable there are no limits. The medical side of this journey is very overwhelming. One of the upcoming surgeries will bring Wes' midface forward, which will help with breathing, speech, and eating. This involves this device: http://www.klsmartin.com/products/distraction-devices/midface/?L=2. I am sure you can see why this would be overwhelming. Other surgeries discussed for the near future involves bringing his eye closer together and surgery to close the cleft in his gum line and a bone graft that will prepare him orthodontics. Much to process and with age comes new challenges of surgery. Gone are the days of Joey and I carrying all the worry and trying to process everything for Wes. Until the plan is clear, we will continue to save Wes from the worry and fear of surgery and Wes will continue to be the amazing little guy he is.

Adjustments and realizations...

Long over due for an update...Wes has been busy living life.  As I sat in the audience watching him in his little cap and gown singing of how he is ready for first grade, I realized all this time we have been living life he has overcome and made known so many unknowns that I once feared.  The nights he crawled into my lap to read to me, the days he recited, "Short neck, tummy fat, Number 5 wears a hat" or shared the sweet note he wrote to his girl friend and when I asked who was in the drawing on the back he replied, "me, Olivia, and our baby", the school Thanksgiving lunch he stood to tell everyone he is Thankful for his mommy, daddy, and brothers:)... There were challenges and obstacles that other 5 years old do not have to face, but he did with the strength and determination I have come to expect of Wes.   Yes things I wondered and worried would not happen or times I feared would not come for him, he had accomplished. Pre K, then Kindergarten, and on to 1st grade.  In many ways he is a typical 6 year old boy, he would rather be home playing in the playroom or watching a movie or swimming or simply doing what he wants when he wants to. Sometimes he does so well we forget the obstacles he is overcoming daily.  Medical recap: we saw the team in Seattle and a doctor in Texas. I was a bit reserved about the doc in Texas because he felt there was no concern with Wes' palate which is definitely affecting his speech and we did not see a full team.  The team in Seattle was impressive and had a comprehensive plan. As with any surgery this is a huge decision. I have read of and spoke to a mom who lived the unimaginable risk that are briefly reviewed as if it never happens or at least not with your child. The risk that leaves an overwhelming fear in your heart and mind as you wait and pray for the doctor to tell you of a successful surgery and then watch and support your baby through a painful recovery.  The team in Seattle recommended that we see the team at Boston and CHOP before making a final decision.  The distance is a major concern with the type of surgery Wes needs. Wes has an appointment in Boston in September and an appointment in Philidelphia in October. We have to make some decisions and move forward with a plan for Wes.

Adjusting to big changes... Welcome to the world and the Taranto family Cooper Scout, May 12, 2012 at 8lbs 3oz. Wes has gotten down being a little brother, now he is mastering being a big brother.  Of course a sweet big brother who loves to sing and play with Cooper, sometimes like he is Wes personal little bendable super figure. Bam is the snuggling big brother, always holding him and the sweetest baby talk for Cooper. Chase is the pleasant poker, tickling his stomach and giving him that Chase dry humor that Cooper seems to enjoy. All three big brothers steeping up and definitely inline for a father's day gift next year, especially being the men of the house. Cooper, did not come to the world without medical concerns. During one of my ultrasound with the perinantologist, we found that his right kidney was enlarged, but hoped that this would subside as he grew. Instead it increased a significant amount and he now needs 3 additional scans next week at Sacred Heart in Pensacola with a pediatric urologist. 

Yes another adjustment in the Taranto house. Daddy is not there in the mornings when the boys get up to make Wes‘ favorite, Waffles, or at night to crawl up in the recliner with for some cuddle time...Daddy time now is a phone call or skype or adding something special to a care package.  It is going to be a long 9 months, but we are staying busy and counting down the months and weeks. We are one month down today.

Anyone who has ever gone through a deployment knows it is so much more than the length of the actual deployment.  We have been preparing and dealing with this long before he loaded on that plane, 6 months spent dismissing reality,  6 months tearfully denying and begging against reality, tearful see ya later, 6 weeks alone with away for training for Joey and training at home, 4 boys facing reality, reunion for a few day, then another tearful see ya later, all leading up to 9 months living in fear and then who knows how long adjusting to life on the other side. 

Wes is g-tube free. As much as you may think of this as an exciting event, it took some adjusting for Wes. As long as he could remember it has been there, when he did not want to or could not eat or when he did not want to take or taste his medicine. It was not in the way and trust me did not stop or slow him down from anything. He knew how to maneuver around that thing like a pro. Shortly after it coming out in bed, he got a stomach bug and it was missed. It has been there through viruses and illness and helped him avoid IV's many times, but not this time. He missed the first 3 days of school and was very sick for over a week. After 6 attempts to get an IV, we missed that g-tube dearly. He is well now and enjoying school as much as any boy. Haha! He likes weekends and loves days off, even starting to listen to the news for the hope of a hurricane day with his brothers already.

There is this empty house that we pass on the way to school that used to make us all smile, but at the summer end we said good bye to our buddies. Guess some trips to Tallahassee are in our future.

Yes, big adjustments at the Taranto house, so what do we decide to do, stay busy. Before Joey left for training and Cooper joined we packed in lots of family time and fun. A trip to Universal Studios and Island's of Adventure and stayed at Wes' dream luxury hotel Nickelodeon Studios, haha. This summer I have tried to keep the boys busy and moving, not slowing down enough to really think about our adjusting life during daddy's deployment. We started the summer with lots of swimming, beach some, but mostly pool time with buddy's, then trips, to Nova's Bar Mitzvah in Crystal River, Uncle Johnny's retirement party in Pensacola, birthday stay on Panama City Beach, which included Wes' first meal at Hooter's (Brandon's birthday request), a week in Crestview with Joey before he left for Texas for his final in country training, and of course the best trip of the summer to El Paso. Not because it is this wonderful magical place, but we got to spend a few days with Joey before his flight to Afghanistan. First flight for Wes that was not tied to some medical visit. Actually flying for pleasure, who does that. It was such a bitter sweet visit. Saying "see you later" so many times really wears a person down. There was not a dry eye in the van as we drove away from Fort Bliss and our countdown to homecoming began. So here we are celebrating one month down and dreading many more to come all the while trying to balance life full of changes.

Summer vacation 2011...

Day one of summer vacation 2011, Wes is burning up with a fever. He was suppose to be playing on the beach or reeling in a big one, since he is champion fisherman of the small fry division. Instead he is curled up in my lap at noon. Tylenol and Motrin will hopefully perk him up. Call in for Dr Curry, maybe he will be able to enjoy some of this week.

Coast to coast and yes as you may expect very different thoughts on how to proceed with Wes' craniofacial surgeries. A definite immediate surgery would be to revise his lip and address his collapsed nostril. Both say bone graft for his gum line at 7 or 8 years. Surgery for hypertelorism, distance of his eyes, 8 to 9 years old.

The contradiction come when considering his midface and palate revision/VPI. Both doctors feel confident that Wes will need a midface advancement. The midface advancement is very complex, involves breaking many bones in his face and placing a external halo type device, RED rigid external device, for nearly 3 months. Seattle this year, Dallas when he is 7 or 8 years old. Seattle does feel that Wes VPI or palatal length needs surgical repair. Dallas doctor does not hear a significant nasal emission or air through his nose meaning his palate is not closing enough. Also discussed is the fact that when his midface is advanced, his palate will also move forward making this VPI (causes nasally speech) more of an issue. Sure that makes little sense to most, but basically Wes already has difficulty breathing a palate revision now would make this more of an issues. A midface advancement would bring his face out more making breathing better, but also creating more noticeable nasally speech. Although a midface advancement could leave a larger space between his palate and back of his throat creating more nasally speech, it could improve other aspects of his speech. As his upper palate would come out more, which at this time causes his tongue to thrust out when he is speeking, because his lower jaw protrudes out past his upper jaw, Class III malocclusion. A midface advancement would also bring positive changes to protect Wes' eyes, as his eyelids should be able to completely close over his eyes. Right now his eyes are not protected by his orbits, because his eyes do not sit safely in his orbits. Of course the most important change would be his face coming out enough to give his airway more space. Here is a little girls story with the RED.

According to Dallas doctor there are only 3 centers who treat children with Wes' type of craniofacial situation, Dallas, Seattle, and UCLA. Nothing in Florida! Seattle is not overly concerned about the distances, but it would mean pretty much taking residence in the Ronald McDonald House for an extended amount of time, 1 to 3 months. They also feel that on the east coast the team at CHOP could handle the complexity of Wes. At this time we are awaiting notes from both teams before making any decisions.
Surgery is never a decision you want to make for your child.

Trip to Dr Miller, endocrinology, in Gainesville went well. Growth hormone us working and everything else seems to be checking out fine. His last trip to G'ville fir the ophthalmologist also went well.
Aside from a few sinus infections and chronic leg pains Wes is doing well. He is 100% boy! Well except for his desire for homework, Chase and Brandon think this is just crazy! Of course pre-k homework would likely include dress up and snack.

For anyone who has missed the billboard picture of Wes with the words Big Boy, my boy is officially became a big boy this summer and he is sure to remind this everytime it is convient...like when I tried to bulk him into the car seat, he needs a booster, when he wants to tag along with his brothers biking the neighborhood. When you poo poo in the potty, you deserve to make some big boy calls.
Summer fun! Wes has been a busy little fish this summer. He absolutely loves going underwater, long enough to make everyone in the pool nevous. The moment I pull him up, he is diving back down. Let's just say we are both wore out after a swim.
it has been a summer for camping for our family. Our summer started with a weekend tent camping trip to Ginny Sprngs. The boys tried to spend every waking moment in the springs, but had enough wood time to bring home some red bugs. We then headed to Indian Pass campgrounds for a week of camping and a lot of time in the pool. Red jellys showed up and beach swmming was out. That week we took a camping break for Toy Story 3, which of course Wes is still talking about. Told Chase he is Lots O Hugging bear, because he is always aggravating him.
This week has been full of follow up appointments. Endocrine, orthopedic went very well. I was hoping for more from orthopedic after almost 3 weeks of nightly 2am wakings and sporadic daytime episodes with Wes crying in leg/foot pain. GI ordered a pH probe and gastric emptying scans , which requires an overnight stay. Hate for everyone else that our 2 day trip has been extended, but it is nice that it could be ordered so quick and avoid another trip to Gainseville.
Warning for any grammar or spelling critiquers, this was typed on my phone.

For anyone how has missed the billboard picture of Wes with the word Big Boy, my boy is officially become a big boy this summer and he is sure to remind this everytime it is convient...like when I tried to bulk him into the car seat, he needs a booster, when he wants to tag along with his brothers biking the neighborhood. When you poo poo in the potty, you deserve to make some big boy calls.
Summer fun! Wes has been a busy little fish this summer. He absolutely loves going underwater, long enough to make everyone in the pool nevous. The moment I pull him up, he is diving back down. Let's just say we are both wore out after a swim.
it has been a summer for camping for our family. Our summer started with a weekend tent camping trip to Ginny Sprngs. The boys tried to spend every waking moment in the springs, but had enough wood time to bring home some red bugs. We then headed to Indian Pass campgrounds for a week of camping and a lot of time in the pool. Red jellys showed up and beach swmming was out. That week we took a camping break for Toy Story 3, which of course Wes is still talking about. Told Chase he is Lots O Hugging bear, because he is always aggravating him.
This week has been full of follow up appointments. Endocrine, orthopedic went very well. I was hoping for more from orthopedic after almost 3 weeks of nightly 2am wakings and sporadic daytime episodes with Wes crying in leg/foot pain. GI ordered a pH probe and gastric emptying scans , which requires an overnight stay. Hate for everyone else that our 2 day trip has been extended, but it is nice that it could be ordered so quick and avoid another trip to Gainseville.

Sitting here at Childrens' Memorial waiting for Wes to come out. It will be a long day, he will have a MRI of brain and spine, then head to CT for CT scan of his head and spine and extension/flexion CT, then up to the OR for a broncoscopy. He will be back for at least 2 1/2 hours. We met with Dr. Rastater, ENT, who is hopeful he will get some answer and a plan concerning his breathing and possibly continued aspiration pneumonia.
He was pretty calm until we walked into the pre-op area. There was a little boy screaming and that all to familiar "tired little tiger" gown. I was able to stay with until he was sedated...that seem to do little to comfort him when he saw the gas mask. Fortunately the gas works fast and he was sleeping peacefully when I left.
Wes loves this song. In the last week, he learned the entire loop of the song last week and sung it on our flight up.