Sunday, November 05, 2006

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.

Sunday, October 22, 2006

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.

Saturday, October 14, 2006

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.

Tuesday, October 10, 2006

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.
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.

Sunday, October 08, 2006

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 (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.

Saturday, September 30, 2006

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.

Thursday, August 17, 2006

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!

Friday, August 11, 2006

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.

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.