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.

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

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.

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!!!

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!

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.

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.

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!

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.

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.

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.

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/

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.

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.

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.

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!

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!

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.

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!

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.

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.