Wes' Journey

Summer vacation 2011...

2011-07-25T09:27:00.000-07:00

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.

2011-01-08T07:26:00.000-08:00

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.

2010-11-15T13:31:00.001-08:00

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.

2010-07-14T05:14:00.001-07:00

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.

2010-07-14T05:14:00.000-07:00

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.

2010-03-22T09:02:00.000-07:00

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.

2010-03-18T20:02:00.000-07:00

So here I sit another night in front of this computer with the unsure feeling sinking deep into my heart and mind. Really does not matter what the procedure or test and sometimes appointments, I hate to see the fear in his eyes when I hand him over and then comes the waiting... Since I am up, what better time to share a couple pictures of my big 4 year old. Wes had a blast in Atlanta playing in the snow, until the wet cold feeling set in, even then he was a trooper. His brothers showed him how to make snow balls, so everyone got a taste.
He is doing well with his new glasses. No fight to get him to wear his "sunglasses" as he says, all day.

2010-03-17T19:38:00.000-07:00

Happy Birthday Wes! He woke up so excited this morning, popped his head up with a smile saying, it's my birthday. Where has the time gone? My baby boys is growing up too fast.
We will party this Saturday and hopefully his daddy will make it home in time for his party. Then Sunday we will be heading to Chicago. Wes is scheduled Monday for MRI and CT scan of his brain and spine in addition to a CT flexion of his neck and a broncoscopy. After last weeks' pneumonia, we were not sure this could still happen, but his fever has broke and he is doing well. Not that the pneumonia slowed him down much. He would just sit in my lap for a quick break and then he was off. He is always a busy little guy. Most of the time playing with his little guys, such an imagination.

2009-11-08T21:47:00.001-08:00

Wes has been a busy little guy. He absolutely loves school. He woke Sunday morning asking, if I would get him dressed for school. He led the costume parade as Superman. Yes, this is very fitting for such a strong little guy. He is definitely my little super hero.
Past few weeks have been pretty busy. Wes had his ear tubes replaced. He saw the little tiger hospital gown and had a melt down. We were very thankful for the hospital music therapy. He loved playing the instruments and singing.
During his surgery, he had some breathing difficulty. Dr. Becker came out and sat down. I knew this was not good. She and the anesthesiologist are very concerned with his airway. His airway started to collapse and he nearly needed to be intubated, but the surgery is short and the anesthesiologist worked with him. She of course feels that there needs to be a plan for Wes that results in him having a safe airway. Until that can be accomplished she still recommends a trach. His breathing did improve after his tonsillectomy, but has again become concerning. Nothing like before, but then not like it should be.
Two trips to Gainseville in to weeks. First to see the pulmonologist, then the craniofacial team and have a sleep study. Soon heading back for a full cardiology work up to see if his obstructive apnea has done any damage to his heart. That is the biggest concern, permanent heart and lung damage. Damage beyond what I can even wrap my mind around. Dr Curry just says Wes has come so far to let this…
Thursday morning we saw the craniofacial team at Shands. Before I even started sharing Wes’ recent tube surgery, Dr. Seagle expressed how complex Wes’ case is and the fact that he needs some major surgery. The information about his tube surgery was just confirmation to this fact. I asked specifically about his experience with these specific type surgeries, which this team does not see very often, one case a year. This is probably why no one has offered a plan for Wes until now. Six months ago, I put the pressure on for a plan. I got nothing! The surgery is huge, more involved than his original neurosurgery.
Why does it take so long to be heard? I was not speaking alone; I had Wes’ pediatrician and local ENT behind me the entire time. Wes was 7 months old, when his breathing became an issue. Nearly 3 years later and 3 plastic surgeons, to finally get a validated plan.

2009-09-19T12:31:00.000-07:00

Each year a very special mother pulls together an amazing fundraising event, Alexa's Appeal Dinner, for CCA, Children's Cranofacial Association. Her mission is not only to raise funds for an organization who touches so many, she is also dedicated to educate other's of the various craniofacial syndromes that affect so many and their journeys. Knowledge is key in understanding.
Denise creates and shares at this event each year that I personally love to watch. Yes, I cry through the first one or two views, because the videos are so connected to our journey and powerful. These are the children and families I have watched grow, turned to for support, advice...These are very special children who have touched my heart and continue to inspire me. There is one very special little guy in this video that warms my heart and inspires me daily. Anytime someone asks how I do this, I know they have not seen the depths of his smile.
If you watch this video you will see unimaginable strength and beauty that lies beyond a face. When you have time to sit and let your heart melt, here is a link to this years video http://www.photodex.com/sharing/viewalbum.html?bm=175895
This is Alex's Appeal home page http://www.alexasappeal.com/index.html

2009-09-13T12:27:00.000-07:00

Such a nice feeling, being home. Friday night, we came home to a sick boy. Brandon has been fighting high fevers and strep throat while we were away. Yesterday since he was still spiking a high fever, we decided to have him tested for the flu. He tested negative and will start a new antibiotic today. After a year of strep and tonsillitis it is definitely time to say good-bye to his tonsils.
The last two days in Chicago were informative, yet still left us with many unanswered questions. There was good news concerning the report of the two new encephaloceles. Dr. Bowman does not exactly agree with this report, instead she feels that the areas that the radiologist is calling encephaloceles are diseased sinuses. She can not completely rule out the encephalocele diagnosis, but for now would just continue to monitor this area regardless. She feels that they may have over called this as a precaution not to miss anything. Understandable with Wes being under a microscope and he does have a rather “unique” unknown head.
With this positive thought came another concern. Wes head is very unique from front to back, which may be causing some pressure/compression on his brain stem and the flow of spinal fluid around his brain stem and spinal cord. Not that this is easily understood, it does help to have this as a reference for myself. He has platybasia, tonsillar ectopia, hypoplastic cluivus, and a very unique layout... The brainstem compression is the reason she originally placed restrictions on Wes' activities, no trampolines, contact sports, gymnastics... This area was briefly mentioned initially, as an area that would have no prefect fix or surgery, if it became an issue. At that point there were no immediate concerns. Her description always begins with Wes has a very “unique” head.
The portion of the appointment that caught me off guard was her feeling that Wes needs to be taught as a visually impaired child who needs to learn braille. She does not feel that Wes vision will improve and will likely get worse. I did not ask if this is what she anticipates or where she feels he presently is visually, I was shocked. We discussed his vision in depth as she did an assessment of his vision and development at the beginning of the appointment, but after reviewing the MRI she shared this thought. He does get therapy, but is presently not learning braille. Those of you who know Wes, know how well he does visually. The smaller the little guys are the more intrigued he is.
The pituitary cyst that was not seen on this report was again identified. Dr. Bowman compared last years’ scan and she feels it is unchanged.
Dr. Bowman would like to see Wes back in 6 months for another MRI and CT scan. He will have extension and flexion during these scans. She will look at his brain stem, neck, and again the sinus in question at that time.
We also followed up with the plastic surgeon who did Wes' initial palate repair. Dr. Vicari felt that Wes would benefit from a nasoendoscopic evaluation, regardless of where we have surgery for his VPI. Apparently one of Wes' original encephaloceles was bulging where his palate should be hitting for closure, which could have caused muscle defects. The ENT, Dr. Rasttater, who preformed the nasoendscopic was a bit concerned when he looked into Wes' airway. He has begun to snore lately, but nothing significant. I have seen extreme and Wes' breathing has never been completely peaceful, so it is difficult for me to judge. He would like a sleep study before deciding on a palate surgery.
With Wes' anatomy the ENT is also concerned about how his jugular veins run, which would be a concern with his VPI surgery, also a rubbery nodule in his neck. He will look at both during his next MRI and will schedule a broncoscopy while he is sedated.
Beyond all the medical info, Wes’ nasoendoscopy was quite an experience for all involved. Basically the Dr. Rasttater inserted a scope with a camera on the end. Wes is then suppose to say specific sounds, apple, baby, pepper, suzy…instead Wes cried and scream. Eventually when it looked as though all hope was lost, the speech therapist just went with him and had Wes start yelling, “take it out” then she was able to squeeze in a few of those key words. The results showed that Wes’ palate and pharyngeal walls (throat) are not moving enough to close of his nose.
For now there remain many questions, as I imagine will be the case for a long time. Now I face the challenge of balancing and not letting these questions and fears over run today.

2009-09-09T09:50:00.000-07:00

Day one in Chicago. It is amazing we travel this far and still possibly not where we need to be.
Main concern at this time is Wes' speech, which I believe is clear to everyone that he will need another surgery. Symposium last year, Dr. Williams said a videoflouroscopy and nasoendoscopy were needed to best navigate a plan for VPI (Velopharyngeal insufficiency). At Shands Wes had a videoflouroscopy. Here they have ordered a nasoendoscopy for Friday. We will get a report with their plan after.
It also seems to be the consensus that during this surgery, Wes collapsed nostril will be addressed. Not fully repaired, as this comes years from now.
After this surgery, the plan becomes much more complicated. As if surgery is not difficult enough. This plan will include surgery to address his flat nasal bridge, surgery and orthodontics for retruded midface and mallocculsion, possible hypertelorism (wide set eyes). This plan will become more detailed as he grows and develops and will be a process over many years.
The biggest complication seems to be that each issue and surgery is not independent. Everything is intertwined and completely involved, if that makes sense. As Dr. Vicari explained that his encephalocele sat in the area where his soft palate should hit to close off his nasal passage as he talks, I started to realize how everything fits or tangles together.
It seems that we have been able to piece together care for Wes, yet have not found the complete team. I honestly do respect when a doctor offers or suggests the opinions of others, which is where we are now. Dr. Vicari suggested and encouraged us to seek a second opinion concerning surgery for Wes’ hypertelorism with an expert team. He plans to get a list together of doctors who specialize in this specific type of surgery. Options seem to range from New York to Seattle with one possibility in Miami.
So today we walk out of an appointment, not unlike many other appointments with some questions answered, some still to be discovered, and new ones weighing heavily on our hearts and minds. For now we are heading to playroom and then the Zoo. Life was meant to be lived, those who know me and my guys know we love to have fun.

2009-08-30T18:40:00.000-07:00

Wes is a big school boy! He is now an old pro with one whole week behind him. First day, no tears, second and third day were screaming and being torn from me, and the fourth day was the hardest on me as he walked to his little seat holding my hand trying to be a big boy with his little tear filled eyes and trembling bottom lip. Yes, that was the day that tore my heart apart. Tomorrow morning brings a brand new week. He is doing great. It is nice to able to peak in on him occasionally, but there are some anxieties. It was hard bringing Wes to someone new, hoping and trusting that she will give him what he needs, take care of him, and know just how special my baby boy is. Of course he has already turned on the charm and is surely to win the hearts of Mrs. Noble, Ms. Debbie, and Ms. Erin.
We were able to squeeze in a little fun before beginning school with Thing 1, 2, and 3 at Universal Studios in Orlando.
Hard to believe it has been a year since our last trip to Chicago with our pint size pirate. Next week, we will be making the trip once again. Before beginning school, Wes had a MRI at Shands, which has brought many questions. There was a time when each fever, temper tantrum, unusual eye movement, change in breathing caused me overwhelming concern. I felt as though I was always waiting, worrying about what lie around the corner. Slowly I have stepped away from that place and found some comfort with our new normal, only to be snatched back with the shock of change. I expected his MRI to be much like the one last year with some concerning issues, but nothing new. This is not what we got.
Before anyone asks, we don’t know what it means and can not explain anything. We have a report, but only a doctor can tell us what that means. At this point anything we think is only speculation. Most likely, if others were to read the MRI, it would be like reading foreign language. Of the issues noted, the most disturbing was that Wes now has two new encephaloceles in his frontal sinus. Both containing brain and showing some damage.
For now we await responses from Wes’ neurologist, endocrinologist, and ophthalmologist for answers on the other issues. The neurosurgeon would like to see the actual scans and will discuss these with us next week. So here we are waiting…

2009-06-17T16:23:00.001-07:00

2009-06-14T23:00:00.000-07:00

Lots to update…We recently had a craniofacial team meeting at Shands. I pressed for an idea of what they expect as a plan for Wes long term. Most of the time, we only get the immediate need to know information. Of course those of you who know me, know I need to know everything. I also totally understand there are no concrete plans. At this point I also understand much of the medical lingo.
Here is the plan with a strong emphasis that there is nothing definite. Wes will need some surgeries in the future, I want him to have a team who can explain this plan with confidence after much experience. 5 to 7 years old, he may have surgery to bring his eyes closer together, build a nasal bridge, and address his midface retrusion. This may be staged, which would involve multiple surgeries and will also involve many surgeons. There are many questions to be answered before proceeding with any of these surgeries. Before kindergarten, scar revision and minor work to his nose. Around 9 years old, a bone graft from his hip to his gumline. His teenage years will follow with surgeries to revise.
During this appointment we discussed a gene mutation, MTHFR, with the genetic counselor. Turned out there was some information in his chart that had not been discussed. Follow up did not happen as it should have. It looks like this month we are going to be able to pursue a more definite genetic diagnosis. Although some may not understand this, I want to know his diagnosis. We continue to get these “isolated” diagnoses without the entire view. This was again apparent with Wes’ last x-ray to investigate a bulge on his back. Now he adds another doctor to the list to monitor scoliosis. Waiting for results and getting these surprises are heart and mind wrenching. A genetic diagnosis would give us so much information and beneficial connections.
It appears that the most pressing and immediate issue is Wes’ speech. He does have nasal emission, which means surgery to address Velopharyngeal insufficiency. He is doing well with speech therapy, but if his palate is not closing appropriately there will sounds he will not be able to make and he will continue to have nasally speech. It breaks my heart to see him get frustrated when people are not able to understand what he is saying.
He is having a videoflorscopy that I thought would determine whether he needed surgery. Instead they were ready to schedule surgery for June 25th, because it is obvious that he needs surgery. Yes, head spinning quick! It will not be happening that quickly, since Wes’ neurologist has ordered a two day EEG.
A few weeks ago, Wes had a very scary episode that appeared to be a seizure. He was running around, eating cake, and acting completely like a typical 3 year old. We went out to eat and all of the sudden his whole mode changed. First he wanted me to hold him, suddenly felt fevered, breathing changed, and then seemed very unlike himself. We quickly headed to the house. In the rear view mirror, I watched his eyes begin to flutter then roll back, rapid breathing changes, and nonresponsive. As I was unbuckling him, he began vomiting. Immediately after, he was again responsive, yet very agitated and clinging to me. After a quick bath, he went sound to sleep. The next day, Dr Curry checked him out and all was fine. Same week we headed to the neurologist. She was concerned about the way Wes stares at the ceiling and this episode, which prompted a two day EEG to monitor him for seizure activity. Concerned to see how this is going to work. Two days of his little head covered with probes and then wrapped securely with a monitor on his back and hooked to a camera when possible.
June 23rd and 24th are back to Shands for a videoflorscopy, endocrinologist, genetics, and ophthalmologist. June 26th starts the two day EEG with no results for weeks. July 16th was scheduled to be neurosurgeon appointment, but he needs clearance from the neurologist, which will be delayed now. July Wes will also be going to speech camp in Panama City Beach.
In between running to appointments, we plan on enjoying an active summer and a potty training adventure. I plan on enjoying my boys.

Thank you to everyone who made a generous donation of pop tabs possible for the Ronald McDonald House. As you can see the donation filled up an entire donation house. We were told they raise around $6000 each year for the house in Gainseville just from pop tabs. This simple donation helps make a difference for many children and families during a very difficult time. The Ronald McDonald House has provided us with so much more than just a place to rest. Keep saving your tabs. We plan on making a donation with each visit to Gainseville.

2009-03-28T13:34:00.000-07:00

My tough little tiger is 3 years old!! His excitement was bubbling over as he celebrated with everyone. Cupcakes at daycare and he built his very own birthday cake a few times during speech with Ms. Elizabeth and then cupcakes at home. His favorite part is singing happy birthday, which he loves to join in on and sing to himself. Saturday after his birthday we followed up with a bubble birthday party at the house with his buddies. Wes was more interested in washing his hair in the 20 gallon bucket full of bubble mix and actually took a scary head first dive at the end of the party. Amazing, 3 years have passed. Wes has officially transitioned from Early Steps to the Franklin County School System. I sat in that IEP meeting with knots in my stomach. Yes, he was only staffed in for speech and OT eval. His vision will continue with Lighthouse and Ms. Jenny. It was not what he was staffed in for, it was everything that brought him here. This signifies the challenges and differences in Wes life.

Today I sat on the back porch in total awe of the blessings that fill my life. I have searched my heart for words to explain the feelings this past week brought, which explains the overdue post. With three boys, yes I have been here before...yet I have never truly been here before. For anyone to understand, they would need to know where Wes has been, the challenges and strugtgles we have seen him fight and overcome, the days and nights heavy with pain, unknowns, fears... After everything not only did Wes turn 3 years old, he celebrated 3 years of life with a beautiful smile that matches is loving nature.About four years ago, I tossed around cliche's with little thought. Now I realize that then I only had a glimmer of understanding of those words. There truly are not words to explain where I am, to explain life. Each year around Wes' birthday, there is a flood of feelings that overcome me. Each year naturally Wes' birthday brings excitement, a party, song, another candle added to the cake, it also brings realization of strength, beauty, determination, and the power of love.

2009-02-24T20:57:00.001-08:00

Pictures will soon follow. Tonight I just wanted to give an update on Wes' recent trip to Shands. Dr. Collins is looking at sinus surgery for Wes as a last resort at this point. He had a swallow study, which again shows a beautiful swallow and him protecting his airway like a champ for the first portion of the swallow study. He had a thin liquid, then pudding consistency, next barium cracker sandwich, and last he washed it down with thin liquid. The last step revealed an issue. nasopharyngeal (np) reflux. Basically the liquid he was drinking washed up into his nose around the back of his soft palate. The soft palate should met the back of throat closing off air and food from his nose. It looks as if his soft palate is not meeting the back of his throat, because it is not long enough or it is not moving properly. Both issues that some children face with cleft palate and requires surgical repair.
The speech pathologist did not see any aspiration. After I left my mind began to race, so I called back and discussed the possibility of Wes aspirating as he is trying to coordinate breathing and swallowing during these episodes of np reflux. Many times I have seen liquid coming from Wes' nose and him taking these quick mini swallows and trying to catch his breathe. The problem with catching an episode of aspiration like this is the length of time a child is exposed to radiation from the videofloroscopy. She agrees this is a very reasonable explanation for his aspiration.
Otherwise Wes trip was again left us with no answers or plan. Dr. Collins wants Wes to be seen by a GI doctor. Wes was diagnosed with reflux as an infant, but this has not been an issue and appears to have resolved. Today I emailed questions and faxed the swallow study report to Dr. Vicari, who repaired his palate to get his opinion on the next step for Wes.
Tonight was Wes first growth hormone shot. The thought of this night has been weighing heavy on my heart for sometime now. I stood there with the needle in my hand, my heart in stomach, and my breath held. Wes was asleep, but quickly woke up screaming. Poor little guy, hate to think of this nightly routine. Anyone who wants to know how big the needle is or at any point refers to it as a little needle, just remember it is big enough to be a NEEDLE.

2009-02-19T20:21:00.000-08:00

My boy is home and doing well. Wes was actually discharged Saturday night. Getting to a computer to update was not possible, since all of the diaper changes and showers of vomit finally caught up with me Saturday night shortly after arriving home. Then I managed to rush through the virus and head to Gainesville for Wes' appointments Tuesday. Of course it has been a busy week here at the Taranto house. I will post more soon with updates on his latest appointments.

2009-02-13T19:36:00.000-08:00

Last Friday night we thought Wes had caught a stomach virus. Friday and Saturday night were rough for Wes, filled with vomiting and watery diarrhea. (quick dashes to the bathroom, changing sheets, looking for a towel to sleep on...) Sunday, Monday, Tuesday, Wednesday the vomiting stopped, BUTT the other end did not. He stopped eating and drinking. We were relying on his g-tube, even with this he was not holding on to anything. He lost 2lbs in less than a week. Thursday Dr. Curry felt it was time to admit him to pump up the fluids.
So here we are at Tallahassee Memorial Hospital. He was admitted Thursday afternoon. Poor little guy was already beaten down and had to endure four attempts at an IV and two attempts to cath him. His veins kept collapsing. Last night and today he has been getting some much need fluids.
Unfortunately the diarrhea may continue for up to 2 weeks. So far stool cultures from Tuesday are clear. Last night blood cultures were drawn and new "samples" taken today.
My little smiling guy did not have that shine in his eyes today. This has drained everything out of him. He did not even have the energy to enjoy or sing along to the singing gram Miss Jenny sent. (Thanks!) Just before going to bed he did seem to perk up and even ate 1/2 of a banana and a little jelly toast (ok, at least the jelly). He of course did not consider it toast until there was jelly he could lick off.

2008-12-09T20:50:00.000-08:00

Did you think you were going to need to make a trip to Apalachicola to see what Wes is up to? LOL!! Yes, it has been awhile. This is going to be a long update, first a quick medical run down. Wes still has a lingering sinus infection. At this point, I have lost count of how many days he has been on antibiotics. Antibiotics have been a constant for Wes since he was born, but with this sinus infection he has cycled through many 20 day rounds of strong antibiotics without much change. He is now trying a lower daily preventive dose. His ENT in Tallahassee has referred him back to Shands to Dr. Collins, ped ENT. He would like to consider surgical options and has scheduled a stealth CT scan for Dec 19.

Wes has added another doctor to his list, Dr. Wagner, a pulmunolgist at Shands. Dr. Bowman, neurosurgeon, wants Wes followed because of a craniocervical junction defect. (three times fast) Yes, you know my little man has to keep the doctors on their toes. Dr. Bowman’s explanation, “Wes has a very UNIQUE head!” Little background infomation, Wes' midline defect includes a craniocervical junction defect at the base of his skull (similar to Chiari Malformation) and neck instability. Quick explanation, bones in the middle of his head formed in angels that leave little room for the rear portion of his brain and brain stem. This area controls breathing and swallowing, so there is some alarm considering he has aspirated without clear explanation and his breathing has always been an issue. This will be something I will need to monitor, which should be easy considering I will be worrying rather than sleeping deeply. Overall Wes had a good appointment and Dr. Wagner will follow him in 8 months.

Three weeks ago, we stopped all g-tube feeds. He has loved the freedom of no hook ups! He has also discovered chocolate. His weight has dropped a little, but hopefully with time to adjust this will change.

Last month Wes had a cortisol and growth hormone stimulation test. His cortisol levels were normal. He failed the stimulation test with significantly low levels. He needed an 11 to pass and Wes' level never made it to 3. Now we wait for Dr. Miller, ped endocrinologist, and Dr. Bowman, neurosurgeon, to discuss starting Wes on growth hormone. Typically growth hormone is associated with height only, when it actually can affect much more, ie stamina, sugar levels, muscle tone, reflux, resistance, overall well being, increase risk of seizure…this is not one of those medication that come in bubble gum or grape flavoring, instead it is shot given every night. As much as I hate the idea of daily shots, we will do what is best for Wes.

Wes has also seen the ophthalmologist recently, who would like to consider surgery to move his null point in six months. Basically Wes’ null point is the point of best vision. This is why Wes often holds his head chin down or tilts his head to the right. Before making any decisions, I feel we need to explore a surgery that would both move his null point and dampen his nystagmus. Of course there are very few doctors in the US who perform this surgery and most ophthalmologist are not familiar with this surgery or the positive outcomes. Wes’ local ophthalmologist does not perform this surgery and discourages seeking any info on this surgery. Dr. Hertle in Pittsburg appears to be an expert. With everything Wes has faced, exploring the surgery options has not been a focus, but one surgery is optimal, so this must now become a priority.

Now for the fun!!!! November, we were able to take a much overdue family vacation to Disney World in Orlando with our family, my mom, brother, sister in law, Taylor and cousin and family. “To infinity and beyond”, sounds so sweet from my pint size super hero. He absolutely loves dressing up as Buzz Lightyear. He felt completely different about meeting Buzz Lightyear at Disney. As a matter of fact, he screamed in fear at every character that moved and was taller than 1 foot. To make sure Wes and Taylor did not want to be near the characters, we paid for an overpriced breakfast with Mickey, Pluto, Lilo, and Stitch. They were not able to eat much breakfast, as there is really no way to make sure these characters kept a safe distance if you are distracted by food. Chase and Brandon were able to eat and loved hanging out with Stitch. Brandon even brought home a Stitch to sleep with.

The boys enjoyed every moment of the trip and believe me we packed the day full. Who ever thought vacations meant restful days, have never taken children to Disney. My body may have been dragging, but my heart was recharged and my stomach well churned. All from good combination of Space Mountain, Playhouse Disney, Mission to Space, Buzz Lightyear Space Ranger, Mountain Everest, It‘s a Small World…We basically did everything! Family favorites, Chase and Brandon liked Space Mountain, and Wes liked Buzz Lightyear rides. I loved every moment!

Pulling up to the hotel, I almost could not contain my tears. The boys could not have understood how special this trip was for me, for our family. Our journey over the past few years have brought challenges that have weighed my mind and heart with fear and doubt. There were moments when I doubted a trip like this would have ever been possible. Yet, there we stood with a little guy who does not let anything get in his way of having FUN and loving life. Everyday, no matter the challenge, my little man gets up and puts on his superhero smile. Someday I will let him know he has been mommy’s little superhero. I have been blessed with 3. Seemingly unchanged it is through different eyes I now see the gift of love my life has been blessed with.

2008-10-20T20:19:00.000-07:00

Overall Wes is doing really well, which is ironic when I consider the events since my last post. This week he will finish his second 20 day regiment of antibiotics. Total with antibiotics prior to surgery and post op Friday will be 60 days of antibiotics for sinus infection.

He is really enjoying all the benefits of his new palate. Mom is cautious (nervous), so there are a few things off limits. For now he is fine with the limits, especially since he busy with all the possibilites.

Ever wonder where you go for your first cheeseburger? Wes can point the way!!

Yes, that is Wes' favorite vegetable on his nose, ketchup.

How sweet it is...

Palate Surgery Aug 2008

2008-09-01T08:07:00.001-07:00

2008-08-31T20:05:00.000-07:00

Here I sit in front of my home computer with a little sleepy guy in my arms. Feels so good to be home...even more amazing knowing my baby boy is over such a huge step. Before we left for Chicago, Wes told his brothers his palate was in Chicago. Now he is at home with his palate. He is eager to try it out with food, but then changes his mind as the food gets close to his lips. Still a little nervous, but yesterday had his first melted popsicle. It was frozen when I gave it to him...just took awhile to work up the courage to put it to his mouth. Guess you could say we are both a little nervous. Baby steps to keep my baby healing and away from hospitals.

2008-08-27T13:10:00.000-07:00

Wes is recovering well...issues with pain only during the night and first part of the morning. He has been making sure everyone on the second floor knows his pain. Once he is up and out of the funk of the morning, he is full blast.

We had a disappointing appointment yesterday...3 hours and we never saw THE DOCTOR. After a 2 1/2 hours waiting we did see the resident, Dr. Kim, who was in surgery with Dr. Vicari. There really seemed to be no other options as Dr. Vicari was leaving to visit his son today and I want to speak to someone who was involved in Wes' surgery and needed to know how his palate was healing before leaving. He said that Wes' repair looks wonderful! No area of concern at this point and everything is healing nicely. This doctor was very thorough and explained things well, but after traveling from Florida to Chicago for a surgery that was strongly stressed to be done by this specific doctor who knows the complex details of my son's extensive medical history...Joey and I were very disappointed and aggravated to say the least. For a little guy, Wes has HUGE medical file!

This morning I received a phone call from Dr. Vicari on his cell phone, as he was on the way back into town to see Wes. He was very apologetic. It appears the first receptionist failed to page him before she took her lunch break and it was only after we complained two hours later that he was paged. (after he had already headed to clinic in another town)

He also feels great about Wes repair. His repair and the incision to relieve tension are healing nicely. No signs of fistulas! Wes sounds very nasally right now, which Dr. Vicari reassures us is a good sign for a cleft palate repair. He is having some difficulty breathing at night, which is somewhat to be expected with the swelling, but also likely to be an issue after the swelling. Next step would be to open up his nostril. This should really help his breathing. As of right now, he is trying to breath out of his nose which is blocked by a deviated septum on his open nostril and obstructed by a collapsed nostril on the other side.

I will post some pictures later. Wes has found a little g-tube buddy, Cooper. They have been keeping the playroom busy. I will try to post some pictures later. For now here is him and his Diego. Sure Libby Kate hopes his Diego will keep him from snatching her Dora, but then Diego might need a friend!!!

2008-08-24T12:14:00.000-07:00

Quick update...Long day yesterday for our little man. He was up after a dose of Tylenol w/codeine for about 30mins to play w/ his Chicago buddy. After she left his little mind and heart want to stay in the playroom and play, but his little body needed a rest. He was determined to stay, but stopped for a second to lay his head on my leg and almost immediately was out. He spent the rest of the day sleeping. At this point rest is good, sleeping through the pain and allowing his body to work hard healing.
Today he started the morning with a little fever, but a dose of meds and a quick nap gave him a little burst of energy. He was up and colored a picture. Finished his first picture and has now started throwing up. Back to resting for now!

2008-08-22T18:55:00.000-07:00

Surgery went very well. Slow update with my arms full of love trying to comfort my little man in anyway possible. Wes is sitting on top of Chicago in the 9th floor, but not feeling on top of anything. Poor little guy is swollen and hurting. He has slept most of the day, which is good. Typing this with one hand as the other is clutched by my precious boy. Good news is Dr. Vicari was able to close his entire palate and do some work on his gumline. How much will remain a mystery until Wes is ready to show us.

Here are a few pictures. No they are not fun glimpses of the day, but just to let you know he is out of surgery and on his way to recovery. If you know Wes, you know why I had to share this picture. No matter how his day is going, he is going to kick his little arm back to relax. Otherwise his awake seconds are spent watching BuzzLightyear and LigthingMcQueen.

2008-08-22T07:57:00.000-07:00

This morning after Wes was finished looking at his book, we looked through my camera. He loves looking at his family and friends, but you can imagine his favorite person to see Wes. He has decided that he is not Weston, just Wes. Thought I would post a few pictures and a video of things he would rather be doing right now. Wes went back around 9:30am and surgery should take about 2 hours.

2008-08-21T15:58:00.000-07:00

Here I sit the day before a much anticipated surgery. Looking back on October 12th 2006, when Wes' palate repair was originally scheduled, I thank God I did not know all that was to come. Even though I can remember those late nights during my pregnancy and during Wes first year, wishing I knew what was to come, what the future held for my little man...a fast forward button for life. Now I realize it is little by little, day by day we face challenges and overcome. It is not the whole picture, yet the here and now that we rise above.

Wes was such a little ham today. He hopped around the hospital with his cute one leg tigger jump, talking and flirting with his nurse. She said he was the best little patient all day! Of course he was, that is my little man, full of personality, joy, and love. He seems to have a beautiful gift bringing this to those who meet him.

Tomorrow is huge day for Wes. More than a surgery, a huge step that will open doors for him. Dr. Curry wants a picture of him eating his first cheeseburger...how amazing this surgery will be for him in so many ways. To actually give him food and drink and not fear every moment that he will aspirate and end up back in the hospital and to hear his new little voice. Today I teared up buying him a shirt with a sippy cup and the words "half full". We have been asking him where his palate is and with that precious little voice, he says, "in Chicago." Tomorrow Dr. Vicari will give Wes his palate!

There is really no way to explain the emotions I am feeling. Ironic a year ago this very month Wes faced a huge surgery and yet somehow now we ride such a different roller coaster of emotions. The tears that have filled my eyes so many times these past few days are mixed with joy, excitement, pain, fear, anxiety...all in view of what has passed and what is too come. Today looking back, I am in awe at God's power. He has brought us through and filled our lives with love and support I never could have imagined.

Surgery time is at 9:45am, again I ask that you wrap him in a warm, soft, blanket of love and prayer.

A little trip in the rain today!

2008-07-19T22:10:00.000-07:00

Tomorrow night Wes will show the doctors what an amazing difference having his tonsils removed has made. His breathing has improved so much. He will be having a sleep study at Shands. There is alot riding on this study, this will determine if he will be able to proceed with his palate repair August 22nd safely. While we are there he will be seeing Dr Miller, his wonderful endocrinologist and getting another opinion from the pediatric opthamologist.
Wes has been staying busy with Mrs. Elizabeth and Mrs. Marilyn for speech therapy and Mrs. Jenny for vision. He is such a little ham, loves the attention.

2008-06-20T07:04:00.000-07:00

Amazed at how well Wes is doing. Shortly after he came out of surgery, he wanted to get out of bed. He was in the playroom on morphine! His breathing that night was already improved. He was discharged yesterday morning. Shortest hospital stay yet! He is talking and wanting to eat a little by mouth. The ENT said his tonsils were HUGE! He did leave his adenoids. He said the adenoids may not help much with his speech. His anatomy there is also very unique. His adenoids are in the same area as one of his enceph repairs.

Really doing much better than I had anticipated. Guess I have the mind set of preparing for the possibilities. We are going to see a little of Chicago...the part outside of the hospital. Yesterday afternoon we walked down the road to Oz Park. Today Shedd Aquarium, which was crazy. Best part of the day was our walk back. We took Tristans' advice and stopped for the boys to play in the water. Don't worry we are making sure Wes gets rest and takes it as easy as a 2 year old is willing.

2008-06-17T18:13:00.000-07:00

We have arrived here in Chicago! Wes is suppose to be at the hospital at 7:30am tomorrow morning.
He is fired up tonight, playing tag with me and Brandon. Love that sweet little voice. He has started saying so much. Really worried that this surgery will be yet another set back in speech. His favorites lately, "I had it first, it is my turn", "Ligthing McQueen", "Hot dog, hot digitty dog", I spy, and tonight, "your it". You can see he is covering his ground with his older brothers on what he needs to say.

2008-05-28T18:48:00.000-07:00

At this point, I am sure everyone would like an update on Wes. His palate surgery has AGAIN been delayed. Hate to even stop and think about the original plan to have his palate closed at 8 months old. Now with the passing of his second birthday, he still waits.

Wes has been a busy little man since Feb. He was hospitalized for aspiration pneumonia in his right lung, then two months later meningitis. He just finished another round of antibiotics for aspiration pneumonia in his left lung. For the past 5 days he has been spiking high fevers. Yesterday after a battery of blood test, his fevers dropped to low grade and he has been fever free for about 12 hours now. The high fevers every few days seems to be his norm lately. Dr. Curry did some blood test on his immune system and is giving him a booster shot tomorrow morning. Poor little guy...

Here is a picture of Wes during one of his weekly visits to the best pediatricians in the world, Dr. Curry!

As usual he is not letting much hold him down. Biggest challenge is keeping him from eating orally, but with the bouts of aspiration pneumonia we have to stay safe and get him through these next two surgeries. His palate surgery will blessing.

Wes' ENT in Chicago has really caused some frustration. His local ENT has been sharing her concerns with him concerning Wes apnea, since May 07. He has dismissed everyone's concerns with Wes' breathing. I was really discouraged in Feb when I mailed a dvd overnight of Wes' breathing to him and scheduled an appointment. When Wes ended up in the hospital instead, this ENT could only find the time to send his resident to talk with me, who knew absolutely nothing and had the same to offer.
The ENT in Chicago finally has decided to take time to evaluate Wes' breathing. No problem, he has only waited until the plastic surgeon and neurosurgeon set a date for his palate repair and saw this video. There have been so many opportunities for him to discuss this plan with us. Wes local ENT does not feel comfortable doing his tonsillectomy considering all that Wes has going on, which leads us back to Chicago.

Wes is scheduled to have his tonsils removed June 18th and palate repaired August 22nd, pending a sleep study. For now we prayer for his lungs to clear and him to be healthy and strong for these next two surgeries. It is going to be a long summer without Cheetos!

Who can resist those beautiful blue eyes!!! Had to share this beautiful flyer. It is for a fundraising event for FACES. This organization has been a wonderful resource in our journey. Thank you to everyone at FACES! Special thanks to Stephanie who has lended her ear through some trying times.

There are many ways to help this organization in their efforts to assist those who have craniofacial differences. This is one organization that you can trust benefits those facing medical challenges, like my little man.

http://www.faces-cranio.org/

2008-04-24T20:51:00.000-07:00

Wes is home and doing well!Typing this post in what should be just hours from Wes palate surgery. Yeah the surgery that was originally scheduled for Oct. 06, when he was 8 months old. Instead the surgeons feel it is best that Wes have a month to recover. No new date yet.

2008-04-19T19:06:00.000-07:00

No way to update lately. Wes has been in the hospital since Sunday, being treated for meningitis. Called Dr. Curry after his fever spiked at 105.5 with alternating doses of Tylenol and Motrin. Motrin worked the best, but still got break through before the next dose. He came to the hospital in pretty bad shape, but is doing well now. Little glimpse in to the past week, two iv's, vomiting, extreme fevers, rash, blood work, and a spinal tap. He has responded well to the abs, but will need a full 10 days of iv abs. Wed morning I noticed a rash that quickly spread over his entire body. Apparently this is an allergic reaction to the abs. Doctor requested dermatologist evaluation to verify it was an allergic reaction. Allergic reaction to rocephin presents problems for future treatment for Wes, knocks out 70% of abs used for him.
Poor little guy can not catch a break. Wed afternoon he started sitting up a little. Before he wanted to lay flat and cried and fussed with the head of the bed being tilted the least bit.
Prior to this past weekend he had been on 10 days ab at home and beginning an additional days. Apparently the ear, throat, or sinuses resulted in meningitis.

Today Wes has been walking around the hospital using a little elmo backpack as his hat and enjoying some visitors.
This is my first opportunity to update...no wireless at Gulf Coast.

2008-03-18T20:30:00.000-07:00

These are the moments, I wrap my heart around!

Our little tiger is 2 years old!!!! Wes had a wonderful birthday party. He loved the Thomas candle so much, he tired to grab Thomas and the flame. Everyone gasped and Wes pouted out his bottom lip and hugged onto his dad crying. The burning candle did not scare him, it was all the people standing over him, staring, and singing.

The train and table set was a huge hit. Chase stayed up late into the night putting the track together for his little brother. Brandon tried to help, but after a few screws, he fell asleep in the recliner. (He will someday make a good supervisor!) I am in awe watching my boys and how much they love one another.

For now it is our coffee table. As far as I am concerned, it can stay in the living room, so I can watch my boy play. He spends most of the day there.

2008-03-12T11:40:00.000-07:00

This is coming a bit late...Wes was discharged Thursday afternoon. He was so excited to be home and see his big brothers, who gave him a loving welcome home. (the kind that just melts my heart)
Overall Wes has been doing well. Saturday we went back to Tallahassee to visit Papa and do some big birthday shopping. Shhhhhhhhhhh, Wes is getting a train and table set!
Saturday afternoon he spiked a fever, but seemed fine the next day...Sunday night brought another fever, Tuesday, and then again today. Highest fever was Saturday, 103.7. Rest have been 100-101.5. Fevers typically break with Tylenol and he seems fine. Yesterday Dr. Curry ordered another chest x-ray. His pneumonia has not cleared, but this can take sometime. NO, palate surgery until he has a clear chest x ray, which will likely take a month or so. Today his chest sounded pretty good. Dr. Curry feels it is possibly the flu, since he sat in the ER for nearly 12 hours. He has been on a preventive dose of Tamiflu and yesterday started a treatment dose.
Hope to have him on the mend by Sunday so he can enjoy his big Elmo birthday celebration! My baby boy is just days away from his 2nd birthday. Pictures soon of big boy Wes!

2008-03-03T10:50:00.000-08:00

Much happier with Elmo online, INSIDE!

We are back in Florida...would love to say home, but we needed to make a pit stop in Tallahassee. Wes' fever spiked 104.3 the night he was discharged from Children's in Chicago. We gave him tylenol and worked it down. That morning when we woke up to fly out, his fever was down and he seemed to be feeling better as he ran and jumped at the terminal in Chicago...not the case as we landed in Atlanta. I made a call to Dr. Curry, She felt he needed to make a stop at the ER in Tallahassee. She was concerned his fever would spike again or develop breathing issues once we arrived home. The ER doc was reluctant to admit him, but after he talked with Dr. Curry and MAAAAAAAAAAAAANY hours of waiting in the ER he got a room at 2am.
This morning was looking promising for discharge tomorrow. They want him fever free for 24 hours and he had not had a fever since last night, 102. After the docs left he vomited twice and fever spiked, 103.3, so it will be a wait and see how he does with the iv ab's today and overnight. His new chest x-ray last night did not really show much change.
As for now, he has had some tylenol and watching ELMO, of course!

Where my boys love to spend their winter weekends. All the essentials family, friends, four wheelers... Check out the tree house Joey built for all Frink kiddos!

2008-02-29T14:07:00.000-08:00

Well did you really expect Wes to be simple, plain, or typical?
Wes had his MRI and CT scan yesterday. Due to his breathing issues, he has to have general anesthesia rather than sedation. We were told he would be out in about 1 to 1 1/2 hours. After 2 1/2 hours of hearing a woman hack at the end of the waiting room, I began to get a bit concerned and took a walk down the hall just in time to see Wes going into the CT room. A few minutes later, we watched Wes’ nurse run down the hall with oxygen and then some type of breathing apparatus.
Later when we were called back, Wes seemed to be coming out of anesthesia fine. He did spit up during extubation and required suction and oxygen, but by then he was breathing fine on his own and waking up. He was released about 30 minutes later. Then about a 1 hour later, he had a 105 temp under his arm. Tylenol and back to the ER…a chest X-ray and he was admitted with pneumonia.
Today he does seem to be feeling somewhat better. Last night he just laid there, putting up no fight with the nurses and doctors. Today still lying around but fever down and did give us a little smile. He is just waking up for a TEMP check, after a 4 hour nap.
Positive news came from Dr Bowman, Wes’ bone graft is fitting in nicely to his skull base. In addition to monitoring his surgical repair/bone graft, he will need MRIs to monitor a Rathke’s cleft cyst near his pituitary gland. This also requires regular monitoring by an endocrinologist and ophthalmologist.
We also discussed his palate surgery. The surgeries that are most concerning are the future surgeries dealing with his midface. I honestly feel very torn with the decision of his palate surgery, considering his future surgeries dealing with his midface will need to be here were his anatomy his well known.
At this point regardless, we need to talk with doctors on how soon we can proceed with his palate after his recovery. He is a very popular little guy here! My heart is warmed by everyone’s support and involvement in Wes’ care and most importantly can find comfort that he is in wonderful hands here in the cold windy city.

2008-02-27T19:04:00.000-08:00

We have arrived in Chicago! Lots of snow on the ground. I would love to post a picture of Wes in the snow, but he is just not into the snow. Today he is running a fever and not feeling well, hoping all goes well and he is able to have his scans tomorrow.
He has been able to watch Elmo on the the computer and loves it! This Florida family is staying warm inside!

2008-02-18T20:01:00.000-08:00

Next week we head back to Chicago for follow up scans. These scans will be the final step for Dr. Bowman to clear Wes for his palate surgery. Hard to believe this surgery was scheduled in Oct 06, he was 8 months old. Finally the month he turns 2 years old, he can have his palate closed.
Past three weeks, Wes has been struggling to breathe again. Nights are again filled with alarms from pulse ox and apnea monitor. His breathing improved with the g-tube feeds. He was able to take some oral feeds in addition to g-tube feeds without any problems. Not the case now. Dr. Curry is concerned the oral feeds are causing the problems. Still having some issues, but one week without any oral feeds, his breathing has improved. For now Wes is being totally g-tube feed. Breaks my heart when he asks for fruit snacks, pop tarts, cheetos, basically anything.
Hate the thought of my baby enduring another surgery and recovery, but I know this step will give him so much with eating and speech. Wes’ g-tube will make his recovery less complicate. The extreme pain from this surgery often cause feeding difficulties. Wes will have his g-tube. Memories of fighting syringes of milk during the last weeks of his latham and recovery of his lip surgery, will not be the case with his g-tube. The challenge with this surgery will be what will come with his breathing difficulties after having this hole closed.
After his palate heals, he his going to have a huge Cheeto party with an Elmo cake to celebrate his second birthday. Forget the little ball pit, Wes needs a huge Cheeto pit!

This video is for a specific email and not intended for everyone.

2008-01-01T16:19:00.000-08:00

Yes, this is a very late post. Don't hold it against me, I got home and did not spend much time on the computer. I have spent my time enjoying my family and friends. (and in somewhat of a crash and burn)

We have a new puppy, Izzy. Wes loves Izzy, wants her to sit in his lap and love on him, but when the he has had enough he bites back. Yes, bites back!

Still a huge fan of Elmo. Loved being Elmo for Halloween and did not want to take off his fury little friend. He was not a big fan of Santa Claus. He loved all the gifts, especially his older brother's toys. Yes, the ones he is not suppose to mess with.
Wes is doing well. He still has a stubborn case of c-diff, which I hope is cleared with the dose of flagyl he just finished a few days ago. Dr. Curry will order another culture this month. Such a pleasure getting those cultures and then carrying it around. Unfortunately he required another dose of antibiotics a couple of weeks ago for a sinus infection, which has not cleared, heading back to Dr. Curry tomorrow. He will also be having blood work for a follow-up with endocrinologist later this month. Everything he has been through, those blood draw visit are very stressful on him. Thank God for Dr. Curry. She is a one time, quick stick, which is not the case everywhere for Wes. All of his 6 month follow-ups fall in Jan. The month is full of appointments, ophthalmologist, endocrinologist, general surgeon, and neurologist for an EEG. Of course hoping this visit with the ophthalmologist will bring more answers about his vision, but I know this is not realistic at this point. Ophthalmologist is planning on dilating his eyes and evaluating him further for glasses. No that this is not a fix or cure for his nystagmus. He does now have a vision teacher who visits from FIRE, this is his only therapy now. He was seeing a developmental nurse, who quit, occupational therapist seems to avoid me, physical therapist never followed up and speech will most likely be after his palate repair. Honestly he has been tossed around and tucked away with regards to these state services.

Wonderful news since g-tube, Wes is actually on the growth chart for the first time in his life. He is in the 7% for weight. He has adjusted well to the g-tube feedings. He does have some issue granulated tissue and was making trips to a general surgeon in Panama City every other week. Dr. Curry has now taken over those visits and cauterizes the tissue with silver nitrate every other week with the hope to get it under control and stop growing.
Will try to update later this month with good news from all of his follow-ups.

2007-10-17T11:51:00.000-07:00

Dare I post this update...Yes, we are still here in Chicago, but scheduled to fly HOME tomorrow morning at 9:50. It could be a messy flight! Hope the seat beside us is open.

This has been a challenge for our entire family. My heart broke when I called to tell Chase and Brandon that we would need to stay for two more days. Explaining issues difficult even for most adults to wrap their minds around over a phone call filled with my babies tearful pleas was heart wrenching.
Wes just was not doing well enough to safely travel home Tuesday. He has gone 3, 4 and then really stretched it out to 5 entire feeds before vomiting. We have been told that vomiting may just be Wes normal. Wow, what kind of normal is this?

Today seems to be better. He has not stopped vomiting, but has stretched out for 5 feeds, which totals 17 1/2 oz, before losing about 4 or 5 of those. The hope is that Wes will go straight home and stay there, but Dr. Curry has agreed to have him admitted in Panama City, if it is necessary.
Right now he is peeping out the door..tomorrow he will step out that door on his way back home.

Just to let you know the hospital is not as fun as Wes makes it look in all the pictures. Everyone here has worked hard to make sure Wes can explore, grow, and have some fun. It is also in his nature to make the best out of any situation. Not going to let much hold him down for long.

2007-10-15T12:48:00.000-07:00

Wes has learned some new words. Love to listen to that sweet little voice even when he is telling me no and move. His little way of telling the nurses, doctors, momma, and daddy what he wants. He is has also learned to say Elmo and pee pee. Past two days have been filled with Elmo music dvd. He wakes up, pointing to the tv saying "melmo". Does his little bounce dance in the bed.

Life can be so unpredictable...we move one step forward, yes only to take two back. Wes breathing has improved considerably with no desats. Today things seemed to be looking up! Wes will be discharged tomorrow and after a few frustrating calls and $475 fees per flight to get home, I finally found a friendly woman with Delta who was wiling to really listen to our situation. She waived the fee with contact of a medical case manager here.

The steps back, Wes is still vomiting and now having considerably less urine output. Only two wet diapers all day and Wes has gone through every little pink gown on the 6th floor. I worry leaving the hospital with him vomiting the way he has been. The doctors have all assured us that this too will pass with time and patience. Initially we were told this would be a simple surgery and Wes would bounce back quickly, which makes me question why this is not happening. There is no true explanation, which of course I hate. I need answers and resolutions, when it involves my baby. What can I do for him...hate to see him suffer through, yet another difficult time.

Spreading some of that universal charm...a smile and personality that grabs your heart!

2007-10-11T20:36:00.000-07:00

Wes is doing well. The thought of this hole in my baby's little belly just seemed overwhelming, but like most things I have learned as a mommy, I can do it. He of course surprises me with how well he handles everything. He was back and forth with smiling and fussing today, but overall doing well.
Woke up at 6am for my first lesson. The nurse connected his mic-key button to an extension tube and started pedialyte feeding. This was after a LONGGGGGG night with a screaming baby next door. The extension has to be snapped in and then turned to lock. The pushing to get it snapped in was a little too much for me to try this morning. He is still pretty sore.
He was started on slow continuous feeds of pediasure this afternoon. Nurse came in a little while ago to give me a lesson on giving meds. I flushed the line, baby steps. LOL. Has two ports, one for feeds and one for meds. Positive point is there is no more fighting him with meds.
The pediatrician, Dr. Heckle, bought baby Einstein and Thomas videos for Wes. We have been searching the hospital for dvds for the bed side tv, to no avail. Today she walked in with brand new dvds and praises of Dr. Curry.
Bad news is that we will spend the weekend here. She talked with Dr. Curry and she wants Wes to be set before they send him home. She is concerned, because of our location and the resources in our area for little guys. Of course we want what is best for Wes and now looking forward to returning home first part of the week. Possibly Sunday, but most likely will be Monday. Can not wait to get my arms around my little fellows. Love you so much Chase and Brandon!

2007-10-10T20:41:00.000-07:00

Wes has his button...
much relieved that he got the button right away. Often doctors use a different type of tube for the first 6-8 weeks, which is what we were told to be prepared for. He is out of surgery, sleeping now. Just been laying here with mommy and daddy, watching a little baby einstein and resting.
My heart was warmed and spirits lifted yesterday by some thoughtful posts, emails, phone calls, some wonderful visitors, lots of love from home, and my hubby walking into the door. Everyone's support has meant so much.
These hospital days have slowly broken me down. In a way, I felt as though I had failed Wes. Here he is a 18 months old, so much he has dealt with and now a g-tube. Worked so hard against this feeding tube, since the day he was born.
Honestly seeing him after surgery was such a release. Yes, always makes me weak in the knees to see the pain and fear in my baby's eyes, but it is over, the fight, the struggle, the surgery, and now seeing the light at the end of this hospital stay in just a few days. Still going to love on that little belly, just going to give him a few days to recuperate.

Life is a journey to be taken day by day...

Wes is also doing well on the 6th floor here. Of course you know how quickly he steals your heart.

Such a little flirt!

2007-10-10T20:07:00.000-07:00

Day one on the 6th floor has been a difficult one for me. Being on the 3rd floor for two weeks in August and two weeks now, we knew everyone. Had a little hospital support system there. Something to be said for familiar faces. Now we are on the 6th floor, next to a baby who is apparently alone and not happy all through the night and all morning. I honestly feel I have reached my breaking point. It is so much more than the move, days isolated so far from home, awaiting another surgery for my little man. Woke up this morning, ready to leave. Wes finished his last dose of antibiotic last night and had a culture and some other blood work early this morning. Hate the idea of a g-tube. Love that sweet little belly, lots of kisses and tickles there. His surgery is scheduled for tomorrow, not sure a time. Tearing up as I type those words...I am just so emotionally exhausted.

We have made some new friends here in Chicago. Wes loves music therapy.

2007-10-08T20:36:00.000-07:00

Ok, I think I am a pretty reserved person and often hold back when I feel like exploding. Today was one of those days, I held back just how angry I am that Wes had to be moved to the 6th floor. Emotional day for me, there is a lot to be said for familiar faces.
Being away from family and friends has to be the most difficult aspect of having Wes' care so far from home. It meant so much to look up and see my cousin, Chuck, standing in the door. Wonderful timing! All the places he could have been sent for work and he was sent to Chicago.

Joey is flying back tomorrow in time to be here for Wes surgery Wed, which will be great for Wes and I. Desperately hoping to return home Friday night. In time to see my boys play soccer Saturday! I am so looking forward to getting back home, to all of the things we often take for granted...

2007-10-07T20:11:00.000-07:00

The view from Wes room is a breath taking look at the roof. Tuesday will be two weeks in Chicago and all I can tell you about is the green, blue, yellow, and purple color scheme of this hospital room, how a shower can somehow bring back a little of your human side, and almost every moment of 5 Baby Einstein videos. He loves those videos, grabs his attention. Must be a comedy, because he throws his little hand up laughing at the puppet lion.

Today as I was taking a shower Larissa, a student nurse watched Baby Einstein with him. When his nurse walked in, Larissa was talking to Wes in Russian. The video starts out in Russian, which made her think we spoke Russian, so she was trying to comfort him in Russian. Wes has been fortunate to have such wonderful people caring for him. Take care of your nurses, they truly are an integral part of your care in the hospital.

His g-tube surgery is scheduled for Wed, Oct 10, which I have woke up each morning dreading, questioning, and ready to run from. Antibiotics end on Tues, which leaves no time for anything else to arise.

There truly is a breaking point in a hospital and I have reached mine a few times now, which has opened my eyes to the value of a hospital Social worker and the volunteers. Wes is still in isolation and no hope of getting out. Our social worker, Audrey, has stopped by everyday to visit and check in on us, even called Saturday. She has been a great resource and a wonderful person to talk with.

Wes is really doing well, back to the little happy fellow and yes putting big smiles on his nurses faces. Such a little flirt! Stuck in a hospital room, yet not much slows him down, always smiling and ready to play. Just loving life...

2007-10-01T17:25:00.000-07:00

Here are some photos to melt your heart.

Yes, my little man misses his big brothers!

Turns out that Wes has salmonella infection. This morning Dr. Heckle, peditricain, said that many people carry this bacteria in their intestines. Both the C-diff and salmonella bacteria have overtaken Wes' intestinal system after strong antibiotics have mess up the bacterial balance in his intestines. The salmonella bacteria has entered Wes blood, oddly enough though his stool cultures have been negative with any type of bacteria. Because Wes has had a recent surgery and more to come, he needs antiboitic treatment to fight this bacteria.
Today he is again isolated in this hospital room, but enjoying some Baby Einstein movies. The peditrician is switching him to bolus feeds, big feeds a few times a day, instead of continous, which requires him to be constantly connected to a feeding pump. After one week in his hospital bed with this nasty infection wearing him down and causing vomitting and diarrhea (over a month) he has gotten pretty weak. Yesterday he was not able to walk, very unsteady and wabbly. Today once they start bolus feeds he will be able explore this "big" hospital room and just get out of bed.

2007-09-30T13:33:00.000-07:00

Wes is still here in the hospital. Again I feel complete confidence in Wes care here at Children's Memorial. He a spinal meylogram Wed showed the success of his neurosurgery last month. NO leak!!!! Even with this information, Dr. Bowman has stayed very involved in Wes' care.
Unfortunately due to his prior C-diff infection, g-tube surgery was postponed until Friday. Wednesday and Thursday brought high fevers, which resulted in his surgery again being postponed. Yesterday his pediatrician here, Dr. Shah, told us that Wes has a very serious blood infection. At this point no specific name, only referred to as a gram negative bacteria. Initially Dr. Shah and Dr. Bowman felt there could have been contamination, b/c this is so serious and unusual. Yesterday afternoon was very scary as Wes began vomiting that was alarming to his nurse and doctors.
Today Wes has shown some signs of improvement, lower fevers and no vomiting. His second culture results today did confirm a gram negative bacteria. This morning because of the vomiting and gagging, Wes pulled his feeding tube up some. X-rays showed that it is still in his stomach, which is to his benefit. He has been taking very little by mouth for many days now. At this point we do not know when his g-tube surgery will be schedule. With this infection he will need at least 10 days of IV antibiotic treatment. Today Dr. Bowman told us how important it is for Wes to be here with this infection.
Due to me making reservations with the wrong Ronald McDonald House, Joey is homeless and floating between waiting room cots and the chair bed in Wes room, when his nurse allows two parents to stay in his room. At least we have been fortunate enough to be isolated in a private "suite". Wes' first few days, his nurses and doctors come in with the full yellow suits, which oddly enough Wes seemed to think was funny.
There is a point in the hospital when you really begin to break down with each issue weighing down heavier. Beginning so far away from our boys, family, and friends also adds to this difficult journey.
I know Wes webpage reaches many wonderful people. I would like to request that you all pray for Mr. Charles Creamer, and his family. His daughter Marie Lee is close friend of mine and their family is faced with some very difficult decisions after a very lengthy battle in the hospital with several lung infections.

Love to everyone!

2007-09-23T19:52:00.000-07:00

Wes is such a busy little guy. He is all boy! After his surgery and returning home, he is back to full speed. He has dealt with some issues, but has not slowed down. His sleep apnea has come back full strength. Dr. Curry feels the best option at this point for Wes is a g-tube, which will help with food irritating his airway and help Wes gain some much needed weight before his palate surgery. (Here is link with pictures and explanation of g -tubes http://www.rileypediatricsurgery.com/Gastrostomy.htm)
He is scheduled for g-tube for Wed Sept 26th in Chicago. Yes, back to Chicago! Dr. Bowman wants Wes back for scans and where all doctors involved are aware of his neurosurgery and airway issues. His surgery site is actually visible through his palate.
The antibiotics he had post op in the hospital caused an intestinal infection, C-Diff. This has caused horrible diaper rash and put us on alert for side affects. It can also cause this surgery to be postponed. Dr. Bowman has arranged for Wes to have surgery with the head of the pediatric surgery department, Dr. Reynolds. She does require that Wes have a clear culture before proceeding with surgery. Last week this infection appeared to be resolving with Flagyl, but today this does not seem to be the case. Friday the local hospital sent out a culture that will not be back until Monday. Joey and I are suppose to fly out Tuesday. Wes will be in the hospital for a few days following surgery and in Chicago one week post op to learn how to care for and change the g-tube.

2007-08-23T09:55:00.000-07:00

We are home! Wes was cleared to travel home Tuesday.
Wes had a myeologram last Tuesday, dye injected into spinal fluid, he is tipped upside down, and then a series of scans to look for a leak. There was one questionable area according to the radiologist. With this scan and the fact that Wes’ nose is dripping clear fluid and his eye is watery, Dr. Bowman feels his palate repair needs to wait until another myelogram study. This will clear him of any possibility of a leak. He should have another in 6 to 8 weeks from now. He will also have a MRI of his head and spine. All of scans have been focused in the front of his head, while there are some additional issues at the base of his head. For now we continue to watch him closely for any fevers, which he has been, fever free since we left the hospital.
He is recovering well! I don’t know who was more excited to be home! Amazing how much your kids grow when you are away.

2007-08-19T06:51:00.000-07:00

Wes was released Thursday afternoon!! He has been enjoying time free from wires, nurses, doctors, and even momma and daddy. We have been letting him walk and play independently without a padded room. Does not mean we are far behind or that my heart does not race with every wobbly step. He is doing great!
His breathing had improved immediately post-op, but as the days have passed his nights and naps are again filled with gasps and difficulties breathing.
His appointment is Tuesday with Dr. Bowman and if he is cleared we hope to fly home Wednesday. The thought of home warms my heart and mind!

2007-08-15T11:19:00.000-07:00

Sorry it has been so long since, I have updated. Wes’ fevers finally broke on Sunday. Dr. Bowman was still concerned with his drippy nose and decided to move his myelogram, dye inserted into his spinal fluid in addition to a series of x-rays and CT scans.
Yesterday began with Wes choking up his OG tube, then the afternoon was spent waiting for him to return from the myelogram. Dr. Bowman was pleased overall with the scans. She is aware of the radiologist concern with one area, but feels that this area is part of his nasal septum.
She has been very conservative with Wes case, handling each issue delicately and thoroughly. This morning she decided to forego any further testing and release Wes tomorrow if he is fever free without antibiotics for 24 hours. No fevers and then he can have his PICC line removed. He went through a very traumatic experience to get this line.

2007-08-11T18:43:00.000-07:00

Fever is back! Not quite as high, yet high enough to need a rectal temp and another fever work-up today with blood test and urine, which means another catheter.
His swollen droopy eyes tell that he does not feel well, yet he still pushes through, rest, play, rest, play...
Loves to take a stroller ride. We did get to spend a little time in the family area on the 5th floor today. He was immediately back in the Flintstone cars. He kicks back and enjoys ride.
Hopefully tomorrow will bring answers and NO fever.

2007-08-11T07:50:00.000-07:00

Somewhat feel I am updating blow by blow. Yesterday Dr Bowman came in to do Wes spinal tap. Once we discovered he would not be having any sedation, I was so relieved to see her face. Not the norm for her to do the spinal taps. She was very particular about how Wes’ puncture was done.
Poor little guy had absolutely nothing, but some numbing cream on his back and mom’s hand to squeeze. He felt so bad, just did not have much in him to put up a fight. The spinal fluid did appear very clear, which was a great sign.
Fever was still very high and he spent the night having hourly temp checks. Yes, the kind no one enjoys. This morning around 5 am, Wes’ fever broke. Around 8 am he started sitting up and seems to be feeling much better. Nsg team came by this morning and said his lumbar puncture came back clear. Not sure on all of the other test, but his antibiotics have been bumped up as a precaution. I missed this nsg stop as I was consumed after the nurse this morning left his diaper twisted.
Right now Wes is sitting up in bed next to me and playing with an amazing collection of toys he has acquired during his stay. Of course the hospital water pitcher is his favorite. He will need his own toy box before we leave.

2007-08-10T13:17:00.000-07:00

Yesterday, Wes had a good day. Actually went to the 5th floor to see the Rainbow Dogs. He was not sure about those doggies, but enjoyed being pushed around in the little flintstone car and took away a mini dog that has been clutched in his little hand while he naps. The past two days he has had two wonderful nurses, Ingra and Tristen, that have been on top of everything.

Today Wes is feeling pretty bad. This morning he spiked a fever, 103.5. He had Tylenol, which did not bring it down at all. He has been having HOURLY rectal temp checks. So far he has had a battery of blood test, urine which he was catheterized for, chest x-ray, CT scan, been thoroughly checked physically by a ped, ears, eyes, stomach, chest...all checked fine, and seen by and physically evaluated again by the infectious disease team. Nsg nurse practitioner, Kathy, removed his bandage to check his incision. Yes, of course pulls at a mom's heartstrings to see, but it does look well. We are still awaiting blood test and ct results. Right now he is NPO, awaiting a lumbar puncture to check for meningitis.

2007-08-06T20:40:00.000-07:00

Positive notes: Wes was sitting up in our lap playing. He loves seeing the boys and Taylor. The swelling also went down enough for him to be able to open his eyes.
Wes will have a CT scan next Thursday. Dr. Bowman will then determine if he can be released from the hospital and have feeding tube removed.
Wes will go in tomorrow morning to have a PICC line placed. After tonight, this is welcomed addition to his web of wires. The antibiotic and pain meds are rough on his little veins. This also saves him the repeated sticks for blood draws. He did come out of surgery with an arterial line, which saved him many sticks, but could not come to constant care with this line.
Tonight he blew an IV line and was in miserable pain. His little leg had swollen terribly. Of course this happened or was realized as the nurse was holding his pain medication. Instead of relief, he spent two hours screaming in pain, kicking heating packs away and anyone else who dared near him, and then he received a BIG ouchie for a new IV.
Hoping for a little more sleep tonight, this may be the case out of shear exhaustion from his experience this afternoon. Last night he wanted to be held all night. He would stick his little hand out of the crib wanting to hold my hand. Of course that was not enough and at 2am and no rest for either of us, we cuddled up in the chair. “Slept” sitting straight up!!! Nurse has me prepared tonight with a “comfortable” reclining type “chair”. Who makes this hospital furniture????

2007-08-05T13:10:00.000-07:00

Wes was moved last night to a step down from the PICU. Constant care unit is basically six beds divided by curtains. All neuro patients, which is better for Wes. Last night they also removed his arterial line and catheter.
He is doing better since Dr. Bowman came into the ICU and laid down the law on his pain meds. Pain is still an issue, but better.
He is being fed with an oral gastric (OG) tube. He is finally getting some pediasure, but is not real happy with this tube and has tried to maneuver it out with his tongue. With his palate open there was just too much communication. This will remain for about two weeks.
His little eyes are swollen badly. Both have been swollen completely closed. His arms are in no-nos to keep him from pulling out the OG tube. This keeps his arms straight, but he still manages to let me know, he wants to be held. Reaches up and clinches his little fist. It is a difficult task with the swelling and wires, which have lessened in the past day. Even lying in my lap, he does not want to be touched or any type of movement. Want be long and he will be running from anyone in white coat or wearing those latex gloves!
Yesterday Dr. Bowman proudly showed me his CT scans. Both of his encephaloceles are covered with the bone graft from the top of his head, just a bit larger soft spot. His surgery was perfect!!!
Recovery will take time, but he is such a strong little fellow!

2007-08-03T14:37:00.001-07:00

Wes is coming out of surgery!!!! They are still working with his breathing tube, but actual surgery is OVER. Dr. Bowman and Dr. Vicari came out to tell us everything went perfectly. He did indeed have two encephaloceles, which are repaired now.
He will have a g-tube for about two weeks, due to the communication of his open palate and the surgery site. Anesthesiologist is trying to remove his breathing tube. We will know soon, but will not be able to update for awhile. I will be with my baby!

My boy is such a strong little fellow!!

2007-08-03T12:35:00.000-07:00

Latest update, it is 3:30pm and Wes is doing great. Estimated they will be finishing up in 1 1/2 hours.
Thank you all for lifting Wes up in prayer!

2007-08-03T08:06:00.000-07:00

Wes is now in the guided hands of Dr. Bowman, Dr. Vicari, and Dr. Schroeder. Wish I could say his transition was smooth...The anesthesiologist gave him versed, which should calm him down. Instead he had an opposite reaction, startled eyes, shaking, and pushing everyone away. The positive aspect of this medicine is that he will not remember any of this traumatic experience. Everyone in the room reassured us of how closely they will be monitoring and caring for Wes.
Dr. Bowman came in this morning thoroughly explained the procedure and answered all of our questions. She did feel the need for Wes to have a feeding tube for about two weeks post op, as his palate is open and way too much communication/exposure. This did come as a shock, but also a reminder that she has a well thought out plan with Wes' best interest top priority. As she walked away to the OR, she held my hand and gently told me they would take care of Wes. I feel in my heart that they will with the guidance we have all prayed for...
First update, after over an hour in the OR, Dr. Bowman is now setting up to begin surgery. His broncoscopy and feeding tube were the first portion and so far everything is going smoothly.
Warning: my post for the next few days will be scattered, as this morning handing my little guy over was the most difficult thing I have ever faced.

2007-07-27T21:47:00.000-07:00

Tonight at the Ronald McDonald House, tomorrow night Children's Memorial. His MRI and Stealth CT Scan are scheduled at 1:30pm, after which he will be admitted. Long day! Nothing to eat after midnight. Yeah, tell that to my little 6am breakfast man.
Enjoyed a day at Navy Pier today with all three boys and our friends here in Chicago. Chase and I rode the Feris Wheel and saw the beach on the lake! Beautiful blue water. Wes and Rebecca danced for a band on Navy Pier. Such little charmers, the ladies brought them each two leis, all eyes were on them. He loved the loud music. Care free and loving life. His positive energy is so lifting.

As Wes' surgery draws near, I ask you to surround him in love and lift him up in prayer. In your mind and heart wrap him in a blue blanket of love. He will find safety and strength in the warmth of the the love that surrounds him.

2007-07-24T04:40:00.000-07:00

Flights have been scheduled and doctors have all given clearance for Wes' surgery. Joey, Wes, and I will fly out July 30th. Wes will be having a MRI, CT scan, and some other test before surgery. He will also be seeing yet another ophthalmologist for pre-surgical evaluation and post evaluations. I would absolutely love to get some answers about Wes vision, but not setting my hopes too high, three ophthalmologists later. It would be nice if this doctor has some experience with children with nystagmus and midline defects such as Wes.
Months ago when, I was making this decision, I felt as if my heart would literally stop. A friend emailed asking about living with the decision of Bowman vs any other neurosurgeon, regardless of the outcome. I knew that Bowman was the doctor for Wes. After wards there is no going back, wishing I would have done this, researched that, or gotten on that plane and taken my baby to Bowman.
Last night Wes breathing sounded very familiar. An unnerving familiar! Opened up his little mouth and there was this purplish tissue, protruding through his palate again. Heard this gurgled struggle before about two weeks ago only to find what Wes' ped and I feel is his encephalocele. Although it is not a significant amount visible, it is enough to make my heart stop, enough to make me grateful that the wait is coming to an end.
This journey has lead me to knowledge and strength I never imagined, yet it has also filled my heart and mind with fear. Knowing that Wes' neurosurgeon is making all of these detailed preparations and arrangements is so reassuring. She will get final scans just before he goes into the operating room. I have confidence in her skill and ability and find such peace in knowing that Dr. Bowman will be caring for Wes.

2007-07-12T16:07:00.000-07:00

Wes' surgery was confirmed today for August 3rd by the ENT. When I called again last week for confirmation from the neurosurgeon, I discovered she and her nurse were out on vacation until July 16th. Wow, we have an entire two weeks to prepare. If you are interested in updates I added a feature to add your email address and get a notification when there is an update to his blog. Although I can not imagine there will be much time for updating, I will "TRY" to update his blog occasionally after surgery.
Tuesday was Wes' endocrinologist evaluation with Dr. Nancy Wright in Tallahassee. She again discussed the diagnosis of Septo Optic Dysplasia and the possibility of hormones deficiencies due to the involvement of his pituitary gland. His past two urines were very diluted, so he will be evaluated once again next week then there is a possibility of a water deprivation test. This will test for diabetes insipidus. NOT diabetes mellitus, or associated to blood sugars. Diabetes insipidus is when the pituitary gland does not release an anti diuretic hormone.
As of now Wes' hormones are all normal, with the possible exception of this anti diuretic hormone. He will need to be evaluated every six months, as it is possible that as he grows his pituitary gland will not be able keep up with his body. His pituitary gland did not develop correctly and there is also a cyst present in that area. His age has made it difficult to fully assess his pituitary gland through MRI’s, so the details we have are inconclusive.
The next two weeks are going to be full, preparing for Wes' surgery and lots of appointments. On an exciting note, Brandon's birthday is July 25th!!!

Nothing beats a good day at the beach (with Cheetos)!!!

2007-07-09T13:54:00.001-07:00

Oh yeah, totally boy here!!! Wes has learned how to crawl and the higher the better. Like climbing on top of the table in not enough, he needs to stand completely up and reach for the sky. Mostly he is just crawling to places that let everyone know he is a big boy. His favorite place is the couch, just to sit by himself, like the big guys do. Well today the couch was a little bit bigger than he was and he took a bump to the head.
The moment I picked him up all I could see was a major EGG!!! A few seconds later he was all smiles, sporting a diaper and first of many adventurous discoveries.
Just in case you had any doubt about how tough this little guy is!

2007-06-29T21:13:00.000-07:00

Did not expect to post so soon, but got a call today. Wes surgery is scheduled for August 3rd. Neurosurgeon is awaiting response from ENT before this is the confirmed date. We should know for sure next week and we can begin to make plans. Another month, definitely not as soon as we had hoped to put this behind Wes and our family.

This does give us a month of summer break to enjoy and take time with all three of the boys.

2007-06-29T07:53:00.000-07:00

WAITING!!!!

Thought I would post and update on Wes surgery plans. His sleep study did show obstruction, but Chicago ENT feels that some of this obstruction will be alleviated with this surgery. Plastic surgeon will try to do some minor work to open his nostril during his encephalocele surgery. Both of these issues are contributing to his obstruction. He will also have a bronchoscopy before surgery.
Still waiting for a date. Feeling major frustration as each day passes without any idea of a date.
Wes is doing great! He has learned to climb up on the couch and chairs, but has not got a handle on the getting down part. He is so cute sitting up on the couch with this little smile letting me know he is a big boy. We are working on a few signs, more, drink, all done, and open. He is a bit stubborn and only likes to use the signs when he wants, but is so cute when he does. He has also learned to say uh-oh, which he uses constantly. Loves to say uh-oh and then drop(throw) something down to be picked up.
I would say that an update with a surgery date will follow soon, but for weeks now I have been saying tomorrow only for tomorrow to come and pass with many phone calls. Unfortunately the phone calls are asking for a date not giving a date. I will post a date as soon as I know one...

2007-06-07T06:05:00.000-07:00

Leaving Chicago, babe!!

We have returned from Chicago! Wes' sleep study was not a pleasant experience. He did so well, even smiling, getting all hooked up with the leads on his head, chest, back, legs, and toe, but when he put the nose cannula and the ace bandages around his head and chin he started to really get nervous and anxious. (It did not help that the ENT did a scope down his nose earlier that same day.)
He did fall asleep fairly quickly. I even crawled out of the bed and thought I was going to get some rest. About 15 mins into the study, he woke up screaming and was not interested in going back to sleep or calming down. He did eventually go back to sleep, but the rest of the night was full of screaming and inconsolable wake-ups. I ended up staying in the bed with him and when he did sleep he was resting on my chest.
Finally somewhere between 3:30am and 4:00am he woke up and was not going back to sleep. His little body was literally shaking. I signed to end the study a little early.
Not sure if they were able to get any info from that study. I will truly be amazed!!! This was definitely not a typical night for him.
We also saw the two of the docs who will be in his encephalocele surgery with nsg, Dr. Bowman. The ENT is Dr. Schroder. He is very young, but seemed pretty knowledgable about ca children and encephalocele. The ps is Dr. Vicari. I absolutely loved him. He was wonderful, sitting down and discussing everything so thoroughly with us. He saw a picture of Wes at birth and commented that his encephalocele was apparent then. Although I did discuss the fact that we do not intend on continue Wes' cleft repairs in Chicago, he was willing to give his opinion for future repairs and how he would proceed, which was very informative. He feels there is a possibility that he may be able to do something with Wes collapsed nostril during his Encephalocele repair. Both doctors agree that his collapsed nostril the major contributing factor to his airway obstruction in addition to his encephalocele. Ultimately there is alot involved in Wes' case, which seemed to leave both docs in favor of a temporary trach, but ENT will make a final recommendation after reviewing his sleep study results. The results are suppose to be rushed and complete by the end of this week. It may be the first part of next week before we hear anything.
I am very anxious to get these results and the ENT recommendation. A trach has been a very difficult recommendation to completely accept, b/c his breathing has improved so much. The ps even mentioned that we may question the possibility of proceeding without the trach, but ended in saying he felt the safest route would be the trach.
Wow, when will my little guy get a break. As if he does not have enough issues that will affect his speech. It breaks my heart to think of my very sweet, active baby going through yet another set back, all in our effort to go forward. How can he continue to come out of all this with his precious little demeanor? We will continue to surrond him in love as he continues to amaze me daily with his beautiful smile that he shares with everyone.
No worries for him right now, except for finding the Nilla wafer that has fell on his shirt!!

2007-05-22T13:44:00.000-07:00

Wow, where do I begin...I hate this post...Wes journey seems to get more complicated with each turn. I have told this story many times, as most people think we are in Chicago.
We are suppose to fly out Monday at noon, now we wait. Got a call late Thursday night saying local ENT would not give clearance. When Wes had his tubes replaced, he stopped breathing and the anesthesiologist started an IV preparing to intubate him. He did start breathing on his own and did not need intubation. She is very concerned about Wes airway, especially with the added stress of this extensive surgery and the scans prior.
Now Wes must have a sleep study and broncoscopy before the ENT in Chicago will give clearance. These test will take time to schedule. Actually a sleep study was suppose to be order in Oct when Wes was transferred to Shands. Local ENT thought this occurred and that was how Wes was release without the trach. The ENT at Shands just release Wes with the apnea monitor, which by the time he was transferred his breathing had improved. Chicago ENT is not saying 100% that Wes will need a trach, but based on what he has been told he can not rule it out or proceed with the surgery. Until his airway is secure the neurosurgeon feels the risks and dangers are too great. She called Friday and I have been completely in shock since that call. I just can not believe this is happening. It took us two months to get this surgery scheduled. I just can not imagine waiting that long again. I was so prepared and felt at peace.
I will update a new date as soon as I know.

2007-04-22T07:31:00.000-07:00

Wes’ surgery is scheduled and confirmed for May 25th in Chicago at Children’s Memorial.
Time and patience are key when 3 doctors need to dedicate and entire day for this surgery. The led doctor is neurosurgeon Dr. Robin Bowman.

She will be assisted by plastic surgeon Dr. Frank A. Vicari and ENT James W. Schroeder.
The distance was a concern, but is pale in comparison to the intelligence, experience, and talent of a gifted surgeon such as Dr. Bowman. She has given me an unmatched sense of peace since the day Wes was diagnosed. That day she called personally and told not to feel rushed, as we had time to make a decision, regardless of where Wes was transported. At the time, I felt so overwhelmed and such a sense of urgency to make a decision, I was not prepared to make. She calmed my fears with her knowledge and plan for Wes’. She has been the only neurosurgeon who has felt strongly about needing additional scans to get the best possible views before surgery. She has consulted with top neurosurgeons around the world about this condition and has experience with these types of repairs. Wes is in the best possible hands for this surgery.
Please continue to pray for Wes and for guidance of Dr. Bowman hands.

2007-03-08T17:39:00.000-08:00

Wes is quickly approaching one year old. ~March 17th
We are still trying to make a decision on who will do Wes surgery.

Just a little slide show of Wes. Hope you enjoy.

Weston Jeremy

2007-01-22T05:59:00.000-08:00

Wes' surgery has been postponed. He started getting sick Thurs and was still running fever Friday. Talked with Birmingham and they said anesthesiology would cancel.
We should know something this week.

2007-01-02T12:12:00.000-08:00

Wes is growing happily. He is very busy scooting all over the house, a commando crawler. Two days ago he pulled up and held on with one hand. He got a little excited with his accomplishment and started celebrating too soon. Down he went. These wood floors don’t give. Joey may denied it, but he is also saying mama.
It has been sometime since I have posted. Actually discussing and verbalizing Wes’ surgery plans has been a reality that is overwhelming.
Please respect that this is also a very scary time for Chase and Brandon. They are both processing information at their own level. We prefer that no one discuss anything with them. We have only given them a vague explanation that is appropriate for them. They are not able to explain anything or answer questions.
Wes is now being followed by an Endocrinologist, Dr. Wright in Tallahassee. The only concern on Wes blood work results were his growth hormone level. He spent the day in the hospital for a growth hormone stimulation test the first week of Dec. Because his blood was sent to California, we will finally get the results Thursday. This is something that can be treated, but unfortunately with daily shots of growth hormone. Hopefully everything will be fine. I also monitored is blood sugar, but that has been normal. His hormone levels will be monitored periodically as he grows b/c his pituitary gland is involved in this defect.
We have scheduled Wes’ surgery for Jan 22nd at Children’s Health System in Birmingham, AL. http://www.chsys.org/
Wes will be followed by the Craniofacial Team there. I found these doctors through a mother whose 19 month old son, Eli, had this same surgery 6 months ago. They are live in Lee Summit, MO, and have also searched for the most experienced neurosurgeon. Ironically Wes’ initial appointment was 30 mins after Eli’s. We were able to met Eli, his mom, and grandmother. He was being chased by his mother, running and laughing as we walked into the clinic. Seeing Eli brought me such a sense of peace. Wes’ neurosurgeon, Dr. Jeffery Blount, will be assisted by Dr. John Grant, plastic surgeon. We will travel to Birmingham Jan 5th for Wes’ pre-op to discuss the risks and specifics about his encephalocele surgery.
Continue to keep Wes in your prayers. We are surrounding our boys in love and positive energy.

Thank you all for the prayers, support, and uplifting thoughts.

2006-11-05T22:34:00.000-08:00

Weston Taranto’s family would like to extend a heartfelt, Thank You, to the wonderful members of our community. The fish frys have been a huge success. A special thank you to Travis Bentely, Heather Rash, Ashley Teat, and everyone who helped organize, donated time and supplies to both fish frys.
Although there are not words to fully show our appreciation, I hope you know this community has touched our hearts and lifted our spirits and for that we are grateful. The outpouring of love, support, thoughts, prayers, and genuine concern is truly priceless to our family. We are blessed to call Apalachicola/Franklin County, Our Hometown.
I would like to share with you a special poem:
Dear Doctor, Please remember that little face you are reconstructing is more than Muscle and Tissue and Bone. It is the smile that fills my heart with joy and swells my chest with pride and brings life and meaning into my every day. And when it is you and him behind the Big Doors, and me in the little room, waiting, Please remember you are working with more than just a life. You have in your hands a reason for living as well. And as you look upon your Little patient, a mere few pounds of person, remember that he is cherished, and not by me alone, but by the many whose lives have been touched and enriched by his. And, Doctor, I will also remember That I have chosen to trust you, and to trust your skills, and that by choice I have entrusted his face and his life into your skilled hands, but for these next few hours, while you and he hide behind the Big Doors, and I wait in the little room, I hope you don't mind If I also choose to pray.

For there is nothing more precious than our children.

2006-10-22T14:35:00.000-07:00

Here are 2 photos of Wes' hospital stay.
Traveling to his MRI in a wagon and just hanging out without a worry in the world (just the way we want all three of our boys to feel). We can carry the worries for now. When the time comes Joey and I will give the boys an explanation that is appropriate.

2006-10-14T07:10:00.000-07:00

We are home! After refreshing infant CPR techniques and learning how to use Wes' monitor, we were finally discharged from the hospital.
We don't have much information on Wes' Meningocele other than the location and that his pituitary gland is involved.
The doctors were only focused on his Obstructive Sleep Apnea, which is caused by his collapsed nostil, deviated septum blocking the open nostril, reflux, drainage, and meningocele causing swelling and pressing on his septum. He has steroid drops and reflux medicine and a device which keeps his mouth open for breathing, which seems to help. Eventually he will grow old enough to begin breathing through his mouth.
We are suppose to follow up with the neurosurgeon and plastic surgeon once they have gotten together and created a plan.
I have copies of his reports and will be sending them to a few neurosurgeons for their opinions. Neurosurgeons that I know have experience with this. Now we just wait and enjoy our boys.

2006-10-10T09:13:00.000-07:00

We are heading to Shands in just a few moments. It might be a while before I can post again. Hopefully we will get positive answers. He will be admitted to an ENT and then will have a MRI and be referred to a Neurosurgeon, Dr. Pincus. http://www.neurosurgery.ufl.edu/FacultyPage/pincus.html
As of right now Wes is playing peek-a-boo and in a moment will be transported by ambulance with the Shands transport team. Not the typical patient, which I have always known that Wes is a precious unique little guy.

2006-10-08T06:55:00.000-07:00

My mom saved me today with her laptop and the hospital has wireless. So much has happen.
Yesterday brought shocking and disturbing details on what lies behind Wes beautiful, big, blue eyes. For some time now I have been trying to get answers about how Wes’ Cleft, Wide Set Eyes, and vision issues were related. Doctors have always commented on these issues. He has seen two Craniofacial Teams and two Ophthalmologists. No one except his Pediatrician and a local Ophthalmologist have ever searched for answers. All of these specialist and all I have ever had was a feeling that there was more than what we knew. You can not get treatment on a mother’s feeling. For over 3 weeks now Wes has been struggling throughout the night to breathe. He has now been in the hospital since Wed to monitor his oxygen level in the PICU. His local ENT has been concerned that he has Obstructive Sleep Apnea. The first night both his oxygen level and heart rate dropped numerous times. Initially she was solely concerned that his collapsed nostril was causing the sleep apnea, because if I hold his mouth open as he sleeps he breathes fairly easily. Inorder for Wes to come home we have discussed a Trach for next week. Yesterday the ENT scheduled an CT Scan to make sure there was no other reason for Wes obstruction. I honestly did not expect this scan to give us any new information, as his Pediatrician ordered a CT Scan of his head around 2 months old. This scan showed possible reasoning behind Wes’ breathing difficulties and all the concerns that have been pointed out, but never addressed. Wes has Encephalocele. His brain or the lining of his brain is dropping between his eyes. We do not know any specifics and will not get any more details until Monday after his MRI and a referral to a Neurosurgeon.
This week will bring many difficult decision that must be addressed about an issue that I have little knowledge about. I do know this is very rare and very delicate. Now I must search for the BEST Neurosurgeon for Wes. I don’t even know where to start. Right now we are in our “local” hospital in Tallahassee, FL.(2 hours from home) The irony of this is that when I discovered Wes cleft one doctor mentioned a midline defect and in my search I found the story of a little girl whose mother who searched for answers for years and did not find the answer until she had a MRI, she has Encephalocele. I have been coresponding with her via email since Wes was about 2 months old. Her story can give you an idea of what this is www.widesmiles.org/syndrome/encephaloceles/index.html (reading Rebecca's story has given me a sense of peace)
After the ENT came in the room to give me the result, some sweet young boys came to Wes room to play him a song. He was sleeping, so they gave him a gift and a prayer. These young boysgave up their Saturday to cheer up these children in the hospital, they did not Wes or his story, but said the prefect prayer.
I am grateful that I can look at that little live wire bouncing around in his bed or in my lap and know that for now I can carry all of his fears and worries.
I will pray that Wes' MRI will show that his condition is stable and there is no need for surgery or treatment and he will just be followed. If not I will pray that we find the best doctor for my precious baby.

2006-09-30T22:19:00.000-07:00

Three boys tend to keep life busy and upbeat, so an updated website is a difficult feat. Wes’ lip looks wonderful! He nose has fallen completely and is causing him some difficulty breathing, which has made for some long nights. He saw Dr. Becker, ENT, Friday and diagnosised him with Obstructive Sleep Apnea. She was in the room with him for over an hour and got to see a mild version of difficult breathing when he is asleep. If he would open his mouth, he could breathe much better, but it is hard to reason with a 6 month old. He will definitely be one of those babies who can not sleep without being held, since he spends many nights in mommy arms in the recliner.
He has an appointment Tuesday Oct 3 with the Ophthalmologist, Dr. Pollard, and the Plastic Surgeon, Dr. Burstein. Hopefully this week will bring some answers about his vision and a resolution about his breathing difficulties it should also bring some new photos.
His next surgery is scheduled for Nov 13.
Thanks for everyone’s prayers and thoughts.

2006-08-17T09:02:00.000-07:00

We are home from Atlanta. Wes' looks amazing. He ate really well right after surgery, but then would not take his bottle at all. That night one of the nurses helped me syringe feed him. It has been kind of up and down since then. Yesterday was a long day; he only ate about 9oz all day. This morning he has already eaten about 7oz. He is still eating from the syringe. I can not leave him alone for even a min. The night after his surgery, I could not stand the thought of him sleeping alone, so “slept” in the crib with him. This morning I looked out of the shower only to see him holding his no no and trying to put it to his mouth. He tries to rub his mouth with everything. Right now he is using the pillow that is there to stop him from rolling over to rub his face on. It must really itch, because he does this cute little squint and shakes his head, after he tries to rub his face into my shoulder. It is wonderful to look at his little mouth and nose, he is blowing bubbles and moving his mouth like he is chewing gum trying to figure out his new mouth. He is still working on breathing without his notch and a clogged little nose. I really did not expect his nose to look this little and cute. I can not wait to get some kisses. I used to kiss him right in his notch and he would smile and laugh with his wide smile. We have not seen a full smile yet, just his bottom lip and you can always see his happiness in his eyes. These pictures are shortly after surgery. There will be more pictures to come soon.
Thank you to everyone for your thoughts and prayers!

2006-08-11T10:22:00.000-07:00

Wes’ Latham was placed July 19th by Dr. Shirley. This has been a difficult experience due to the pain from the device and an ear infection Wes has had some difficulties eating. It has torn my heart to pieces seeing him in pain and not being able to take it all away. The morning of his his surgery he weighed 13lbs 1oz, three weeks later he has gained some weight and is now 12lbs 8oz. With just four days before this device is removed he has developed a sore on his tongue from the bar on the back part of the device, which has made feedings nearly impossible.

The difference the Latham has made is so reassuring. Even his Pediatrician is amazed with the results.

2006-08-11T09:11:00.000-07:00

Weston Jeremy Taranto was born March 17, 2006 at 4:29 am. He weight 7 lbs and was 19 1/2 inch long. He was born with a Complete Unilateral Cleft Lip and Bilateral Cleft Palate.

We discovered his cleft during a Level II Ultrasound at 20 weeks. My pregnancy with Wes was overwhelming. Although I tried not to let the information about his cleft cause stress on my baby, it was very difficult for me to control. My feelings and thoughts were at times consumed by uncertainties, questions, guilt, and many unexplainable emotions. Since his birth, we have faced many uncertainties. One major concern was his vision. He did not appear to see. He is now focusing on things and tracking. He grabs anything that is put in front of him. We had to switch Cleft Teams after having a bad experience with the dentist at University of Florida, Shands dental clinic. Wes has a very wide cleft and needed the NAM, a device that would pull his cleft closer together, before his lip closure, but all we were getting was let down and discouraged by our visit to the dental clinic. After this experience, Wes and I traveled to Atlanta, GA to Scottish Rite with a wonderful friend for a second opinion. We had a wonderful team visit and Wes had the Latham, this device is surgically placed in the roof of the mouth (first surgery) and brings the gum together, placed by the dentist at Scottish Rite.
We are now quickly approaching his Lip Surgery, Monday August 14th. He will also have tubes placed and some work done to his nose. Time has gone by so slowly waiting this day and now it seems to be coming too fast. It is hard to understand, but in a way I sad. My baby is about to change drastically. I look at him and all I see is love, my heart. I just feel an overwhelming set of emotions, mostly just scared and my heart aches knowing the pain he will have to endure. This past year has been a roller coaster. What a journey he has taken.