Sunday, November 08, 2009

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.

Saturday, September 19, 2009

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
This is Alex's Appeal home page

Sunday, September 13, 2009

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.

Wednesday, September 09, 2009

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.

Sunday, August 30, 2009

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…

Sunday, June 14, 2009

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.

Saturday, March 28, 2009

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.

Tuesday, February 24, 2009

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.

Thursday, February 19, 2009

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.

Friday, February 13, 2009

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.