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Wednesday, September 17, 2008

My FTT child Trevor and his first 2 years

All about Trevor . . . The first 2 years

Trevor is my little miracle baby. I was told at 6 weeks along that I would most likely miscarry (90% chance I would miscarry as they saw nothing but an empty sack on the ultra sound at 6 weeks pregnant). This made it very difficult for me to enjoy the pregnancy early on as I continued to have problems during the first and second trimesters. Despite the problems early on, I came out of it with a healthy baby boy. Although this baby was due in the 3rd week in August, he came 1 day before my 37th week so he turned out to be a July baby. I realize now that I had been in labor a full day before I realized it (and all through the day of my brother's wedding!). It will always be easy to remember my brother's anniversary date!
In some ways it was fortunate that I had him early as my parents who were in town for the wedding got to see thier newest grandson shortly after he was born. And, it was nice that Trevor stayed in me till after the wedding was over (water broke about 4 hours after we got home from the reception!)

It was a difficult delivery in many ways as he was not descending after hours and hours of labor and hours and hours passing from when my water broke. (and heart rate decels on the baby and a me running a fever) and not to mention the fact that the epidural did not work the last couple of hours of my labor).

He was a beautiful and baby. And, like ryan he didn't seem to want to sleep like a newborn, was very alert and seemed very sensative to noise and he was also a good eater.

We were adjusting to being a family of 5 and trying to figure out our new little boy who had colic. When he was 3 months old we had him Christened. It was a very special day for us. Up until he turned 4 months, he had been a very healthy baby, but at 4 months, he got pneumonia and RSV. At 5 ½ months he had bronchitis. From there on he seemed to be sick every other week. He spent more time sick than being healthy.. Despite his fussiness/colic and dealing with the constant illnesses he had, we enjoyed having this new little being in our family. He had some what I thought of as quirky characteristics such as his sensitivity to noise, his constant need for touching, and had texture issues which I later learned was because he had sensory processing issues. Around 9 months, Trevor started to fall off the growth chart. He has always been on the small side (and of course for me as his mother we didn’t expect him to be big), but he kept losing ground on the growth charts and with his constant illnesses it was hard to get much of a weight gain. We began introducing him to table foods as he had done well with the baby foods, but he really didn’t do well with much of the table foods. When I took him for his 12 month check up, I told the doctor how Trevor would spit out foods with texture – anything with ground beef, chicken, didn’t like rice, even his favorite thing watermelon – he would just suck it, then spit it out. Our pediatrician recommended going to a speech therapist to have his food texture issues checked out. It was there that Sensory issues was first brought up to me. I had never heard of Sensory Processing Disorder (SPD) or Sensory Integration Disorder (SID), but after doing some research it all made sense. Trevor had some mild sensory issues and since it was greatly affecting his weight gain and eating, we began food therapy for him. Around the time he was diagnosed with FTT (failure to thrive). I was worried not just about his food texture issues, his overall crabby/fussiness and his lack of wiehgt gain, but also about how sickly he always was. Colds, flus, viruses, ear infections always seemed to plague us. As much as we love him, it has been difficult to help him gain weight and stay healthy and to try to help him deal with whatever sensory things were bothering him. He seemed to have "colic" for lack of a better word for over 19 months. What worried me the most was whent he doctors tell me his weight and height ratio are not in line with each other and that his BMI was very low. He was so small (0.3% for weight compared to national average, and about 3 percent for height). The doctor was concerned about his height to weight ratio as they should be more in sinc and of course he had been sick constantly so she offered up some suggestions on things we should check into to rule out possible causes of his fussiness/crying jags, and his lack of growth and weight gain. The doctors did not actually label Trevor failure to thrive till he was almost 15 months old alhtough they aluded to it at 12 months and beyond that. One of the first things we had done was a video swallow study so we could start "food therapy". We also had a consultation with a pediatric nutritionist, tested for celiac deisease and allergies and then a consult with a Pediatric gastroenterologist. The video swallow came out fine (no physical obstructions or any physical reason he wasn’t eating table food). The allergy tests didn’t show any allergies for what he was tested for. The consult with the nutritionist gave me new information on how to up trevor’s calories and get more protein in his diet – and at this point we were off dairy as he didn’t do well when he had milk or milk products (up at night screaming, even screaming in his high chair after a few bites/sips). We had the endoscopy procedure done in Feb at close to 18 months. Althought the doctor didn’t see any signs of silent reflux/esophogitus, the lab results from the biopsy taken that day showed he had some mild esophogitus. Trevor’s Dr. had us start giving him prevacid 15 ml tablet once a day. I also decided to have Trevor evaluated by Early intervention after he hit 15 months old and only had 1 word (hi). I wanted to see if he would qualify for speech services as well as food therapy and OT for sensory issues. He was evaluated in January when he was 17 months and he barely qualified for speech services, his fine and gross motor skills were great. He could be such a wonderfully happy baby when he is eating and sleeping well and getting lots of attention. And, he is extremely smart for his age (we are so proud of him for being able to figure out so many things at such a young age) He continued to still be sick a lot and although making progress in food therapy with textures and variety, he still struggled to maintain and gain weight. He started speech therapy in February and has made slow and steady progress. He picked up so quickly on signing and has many signs that he uses. It is so amazing how fast he could be introduced to a sign and then start using it. Between the food therapy and speech therapy, being on medicine for silent reflux, watching his diet, my once usually crabby/fussy boy started becoming my free spirited, adventurous and most importantly happy little boy. We still continued to deal with sensory issues (we didn’t get an OT assigned to us till June of this year), and feeding issues, and sleep issues) but we are constantly making progress! He was doing so well with his speech till end of May when we lost his speech therapist (we are still waiting for a new therapist almost 6 weeks later). He has added several words. In reading this it may sound as if Trevor has major problems ahead of him, but I am confident that we are figuring out how to help him. To meet him and interact with him, you would not ever know that he has sensory issues, that he has eating issues or even that he is a failure to thrive baby. He looks perfectly normal, and at this time he is very friendly, social, mischevious and so full of energy and of life. He is a wonderful little boy and more often happy than not. We have a better understanding of what his mild sensory issues are and how to prevent them. He is doing so well in speech and we have stopped food therapy so our big concerns these days are mostly about his lack of weight gain and his Failure to Thrive. We had a hearing test and it came out fine. That plus his exploding vocabulary make me feel pretty confident that he will continue to progress in his speech and maybe will even not be delayed in speech by pre-school (we'll see!).

This summer we saw an endocrinologist for his "short stature" and his "failure to thrive". We recently had a growth hormone stim test and took a bone age scan both tests ordered by the endocrinologist and will be having a follow up appt with the Dr. in October to discuss the results. His weight gain continues to be hap-hazzard and we will start new vitamins soon in addition to adding oil to his soy milk and pre-digested liquid protein to his juice (and adding morecalories and protein where we can). He seems to be doing well with regard to his sensory issues (in which we have an OT come out every other week for this).

Trevor turned 2 at the end of July. It has been a difficult journey at times, but the first two years of Trevor’s life have been great none the less. I am so happy that I am able to get help from dr’s and specialists so that he can be as healthy and happy as he can be. Out of all my boys, Trevor seems like he may be the smartest at age 18 months – 2years old (just don't mention this to his brothers!) . He is definitely the most mischevious (he sure keeps me on my toes – he finds every loophole we have in our babyproofing), he may be our most adventurous too. He can be very silly and is oh so playful and loving. I can only imagine how he will continue to grow and learn and do new things. At hius last weight check almost 2 weeks ago at 25 months he weighed in at 20 lbs 12 oz. And height wise he was 32 1/4 in tall. He is still under zero percent for weight, but his height if I remember correctly was at 5%.
The next thing on the list is to have the CF sweat test. Another test to rule out cystic fibrosis, and possibly more allergy testing. I'm not in a hurry to have the test done as I hightly doubt thatis his problem, but the Dr's keep mentioning that I need to get that taken care of.
I will update when we have our consult with the Endocrinloligst

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Books I have read

  • Friday Night knitting Club
  • The tale of Edgar Sawtelle
  • Island of Lost Girls
  • The Prizewinner of Defiance Ohio
  • Nineteen Minutes
  • Kite Runner
  • Angry Housewives Eating Bon Bons
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