Another day, another post. Hey maybe I am getting good at this (probably just a fluke 2 posts in 2 days!)
Todays itinerary: Kids dropped off at school (actually we walked)
Get back home and get food and stuff ready to take over to a neighbor down t he street - We are co-hosting a baby shower
Go to previously mentioned babyshower and do hosting duties
Get home and email high school friends about upcoming reunion, enter Tupperware orders and anything else I can get done in the 1 hour that Trevor is sleeping and in the time before I pick up kids. And also, play ring a round the rosey with Lindy my cat that kept circling my car but wouldn't go inside the house!
Go to school and get the boys. Next pick up cat carrier at a friends house. Take cats to the vet (all three of them - thought they had worms, but maybe it was just maggots EEWWW!) Rush home and look over kids homework.
Next book club.
A lot packed into today. The baby shower went well. Cats have thier shots up to date.
I feel like I squeezed 30 hours of stuff in 24 hours, but I think it was a successful day, YAAHH! I'll have to post more another time about the shower, but for now its time to rest.
HAPPY FRIDAY (ok, its not technically Friday yet, but it will be in an hour!)
My Life as Mom to Three wonderful boys Stephen, Ryan (OHI) and Trevor (diagnosed with FTT - failure to thrive, SPD and Speech Delayed). Life is challenging but wonderful with 3 boys!
Thursday, September 25, 2008
Wednesday, September 24, 2008
A little wrench thrown into my already overflowing daily load of stuff to do!
"OK" another interesting morning for me. . .
As I mentioned yesterday, this is one of those jam packed weeks where I barely have time to breath, but another small wrench thrown into the works again this am.
As I am flying around the hosue trying to pick up and clean as much as possible before Trevors OT got here, I am picking up a dish rag in the sink and going to throw it into the wash with a load of clothes. Its gross and I have no idea who put it in the sink all wadded up like that. On further inspection as i unfold it and get ready to throw it in the wash I see that there is a chunk of cat throw up in it. First I wonder why would someone use one of my good dish rags to pick that up. Second thought is, why is it moving!!! AAHHH! EEWWW! and Double EEWW!! The rag was moving and I get the willies just remembering it. Worms!!! My cats (indoor cats!!!) have seemed to have developed a late blooming urge to go outside and they have seized upon some opportunities as of late when I am struggling to get boxes out the door (another time I must post about how my oldest refused to hold open the door for me as he was too tired and I fell into the juniper bushes in my jamas - but that is for another blog post!!). As I was saying I was trying to get some boxed clothing out the door for Goodwill and also get my clothes inthe car for the resale and one of my cats (probably 2 actually) took advantage of it and got outside. Later that afternoon I came home from dropping off clothes to the school for the resale a couple of hours later and there was one of my cats just waiting for me to open the door for her. She has been doing a lot of loud meowing as if begging to get out the last week and got out again yesterday (I again didn't even know she got out till I drove up from a class I took Trevor to and there she was again just waiting for me).
She never seems to go far, but apparantly far enough to get worms. How terrible. So this am as my OT is coming into my house I have a phone in one hand to call my husband then the vet and a clean rag with a bleach solution in the other trying to figure out what exactly to do at that very second.
tomorrow we will go to the vets - and until then I will be busy disinfecting and sanitzing everything, trying to keep the kids away from the cats, and oh yeah I have to finish getting ready for the shower I am co-hosting tomorrow!
Just a small little wrench thrown into the works!! I didn't pass out or scream histercally and calmly phoned the vet, so I think I did ok with this little crisis! Now back to disinfecting and party planning!!
As I mentioned yesterday, this is one of those jam packed weeks where I barely have time to breath, but another small wrench thrown into the works again this am.
As I am flying around the hosue trying to pick up and clean as much as possible before Trevors OT got here, I am picking up a dish rag in the sink and going to throw it into the wash with a load of clothes. Its gross and I have no idea who put it in the sink all wadded up like that. On further inspection as i unfold it and get ready to throw it in the wash I see that there is a chunk of cat throw up in it. First I wonder why would someone use one of my good dish rags to pick that up. Second thought is, why is it moving!!! AAHHH! EEWWW! and Double EEWW!! The rag was moving and I get the willies just remembering it. Worms!!! My cats (indoor cats!!!) have seemed to have developed a late blooming urge to go outside and they have seized upon some opportunities as of late when I am struggling to get boxes out the door (another time I must post about how my oldest refused to hold open the door for me as he was too tired and I fell into the juniper bushes in my jamas - but that is for another blog post!!). As I was saying I was trying to get some boxed clothing out the door for Goodwill and also get my clothes inthe car for the resale and one of my cats (probably 2 actually) took advantage of it and got outside. Later that afternoon I came home from dropping off clothes to the school for the resale a couple of hours later and there was one of my cats just waiting for me to open the door for her. She has been doing a lot of loud meowing as if begging to get out the last week and got out again yesterday (I again didn't even know she got out till I drove up from a class I took Trevor to and there she was again just waiting for me).
She never seems to go far, but apparantly far enough to get worms. How terrible. So this am as my OT is coming into my house I have a phone in one hand to call my husband then the vet and a clean rag with a bleach solution in the other trying to figure out what exactly to do at that very second.
tomorrow we will go to the vets - and until then I will be busy disinfecting and sanitzing everything, trying to keep the kids away from the cats, and oh yeah I have to finish getting ready for the shower I am co-hosting tomorrow!
Just a small little wrench thrown into the works!! I didn't pass out or scream histercally and calmly phoned the vet, so I think I did ok with this little crisis! Now back to disinfecting and party planning!!
Tuesday, September 23, 2008
At this very minute, I am trying to do what some do in the real work force - take my 15 minute afternoon break. When I set up this blog, I knew there would always be something to write about - and I do like to write-but how do I fit in this "just for me" activity when my calender book is filled and my to do list doesn't even fit on one page right now?
I thought I worked hard when I was in my late teens and twenties and late twenties in the working world. Stay at home mom is supposed to mean I am able to coordinate my shcedule and the housework and homework, Dr. appts, therapy when I want to and to be able to give me maybe times in the day for just relaxing right? I still (even 8 years after I became a stay at home mom) think I will be able to squeez in a bit of time here and there to take a call from a friend or finish just one chapter in a book). I do have times where I can talk to friends - as we walk to school or stop for a couple minutes at someones drive for a quick hello, but then 10 mins I usually have to get back home for a nap or an appt. I do bring my book for book club in the car with me when I am waiting in Dr's offices, or in the school line to read 10 mins here or there I am in awe of the women in my neighborhood. They do it all. I see them at a lot of the PTA meetings. They are busy with the school activities, have a sport or some music related activity a couple of times a week, plus playdates, birthday parties, and a ton of other things. I think if I were graded, I'd be getting a D- at mommyhood. I am just not one of those moms where my sons will totally have me in the car most of the day carting them to this or that. I love my boys, but I can barely keep up with PTA events (I felt bad that I did not raise my hand today at school when a mom that was organizing volunteers for fall fest this weekend was looking for extra help and asking if any of us there for a different kind of meeting could help. BNeing a mom is such a hard balancing act. I know some people might differentiate between working moms and stay at home moms - but really we are all working moms, aren't we?
I'm stressed because already this week, I had 2 meeting yesterday - met with my co-chair for Red Ribbon week for the school and had an appt with Trevor's nutritionist. Today, I had meeting at the school for 1st grade room parents, then rush home to get a drink and out the door with Trevor to his Little Learners class - class for mommy and tot to do activities, then get in the car pick up something I forgot to put in my sons' book bag, back to school, then over to a neighbors house to finish planning a baby shower for Thursday morning for a mutual friend. Tonight I have a hair appt, tomoorrow I have Trevor's OT and his Speech, plus an Art Awareness meeting in the evening and Cub scouts - but that falls into my husbands calender!. Thursday is a baby shower I am co-hosting, and then Book club later that night (thank goodness I read the book over a week ago!). Somwehre along the way I hope to be able to go out and get a pair of earrings to match my dress for my class reunion this weekend. Friday - is packed too. And, this schedule is actually one where I did say no to volunteering for this or not committing to that or adding another thing to my to do listis what I have considered that I did actually cut out a few items I initially wanted to do. This just happens to be a month where I became like all the other moms in the neighborhood that I've always been inferior to. They do all this and still manage to go to the gym or get their hair cut and always look fresh in a new outfit. I look hairried and stressed from this past month.
SoI did get a little of my stress and frustration out with this post and I think it was a wise use of a 15 min break (ok it was a little more than 20, but I'm the boss!). Despite all this grumbling, I am dealing with my schedule that is slightly more packed than usual. And, overall, I don't have much to complain about as I am getting through it and if I had to cut something out, I just wouldn't know what to choose - its not like I can cancel a baby shower, and class reunion's come along so in-frequently and Tupperware's record breaker month is only once ayear. I just need to hand in a couple more weeks and then my to do list will be a little smaller and I might have a few less things on my agenda. I always feel busy and I do like being busy. I do want my kids to see that I am interested and involved at what they are doing at school - so I like helping out on PTA parties and such. Its a bit of a juggling act trying to fit time in to keep up my Tupperware business, but I am doing it! I can't imagine not having a big celebration for my good freind who is having a baby. I guess that is just how I am built. I do want to be involved and do want my kids to have play dates and be involved at thier school. I may not compete with some of the mom's but themore that I think of it, maybeI am not doing such a terrible job juggling activites and scheudles and making sure my kids have time for homework and play and keeping it all balanced. I'm not in the corporate rat race, but I am in a rat race nonetheless. And this in no way is meant to take anything away from working moms. I see lots of working moms that are just as devoted to their kids and take half a day off for school events and have a good balance between work and family. I can't imagine me being able to juggle full time work plus the extra activities, but there are lots of great moms that do. My hats off to you, send me some of your energy and endurance! Of course being a mom of kids with special needs takes a little extra work, so I am very fortunate that I can chose to be a stay at home mom at this point in my life.
Ok, my rambling continued even after I said my 15 mins were up, but really I will have to post now as its time to pick the boys up from school. Maybe later I can come back and spell check and proof read!
I thought I worked hard when I was in my late teens and twenties and late twenties in the working world. Stay at home mom is supposed to mean I am able to coordinate my shcedule and the housework and homework, Dr. appts, therapy when I want to and to be able to give me maybe times in the day for just relaxing right? I still (even 8 years after I became a stay at home mom) think I will be able to squeez in a bit of time here and there to take a call from a friend or finish just one chapter in a book). I do have times where I can talk to friends - as we walk to school or stop for a couple minutes at someones drive for a quick hello, but then 10 mins I usually have to get back home for a nap or an appt. I do bring my book for book club in the car with me when I am waiting in Dr's offices, or in the school line to read 10 mins here or there I am in awe of the women in my neighborhood. They do it all. I see them at a lot of the PTA meetings. They are busy with the school activities, have a sport or some music related activity a couple of times a week, plus playdates, birthday parties, and a ton of other things. I think if I were graded, I'd be getting a D- at mommyhood. I am just not one of those moms where my sons will totally have me in the car most of the day carting them to this or that. I love my boys, but I can barely keep up with PTA events (I felt bad that I did not raise my hand today at school when a mom that was organizing volunteers for fall fest this weekend was looking for extra help and asking if any of us there for a different kind of meeting could help. BNeing a mom is such a hard balancing act. I know some people might differentiate between working moms and stay at home moms - but really we are all working moms, aren't we?
I'm stressed because already this week, I had 2 meeting yesterday - met with my co-chair for Red Ribbon week for the school and had an appt with Trevor's nutritionist. Today, I had meeting at the school for 1st grade room parents, then rush home to get a drink and out the door with Trevor to his Little Learners class - class for mommy and tot to do activities, then get in the car pick up something I forgot to put in my sons' book bag, back to school, then over to a neighbors house to finish planning a baby shower for Thursday morning for a mutual friend. Tonight I have a hair appt, tomoorrow I have Trevor's OT and his Speech, plus an Art Awareness meeting in the evening and Cub scouts - but that falls into my husbands calender!. Thursday is a baby shower I am co-hosting, and then Book club later that night (thank goodness I read the book over a week ago!). Somwehre along the way I hope to be able to go out and get a pair of earrings to match my dress for my class reunion this weekend. Friday - is packed too. And, this schedule is actually one where I did say no to volunteering for this or not committing to that or adding another thing to my to do listis what I have considered that I did actually cut out a few items I initially wanted to do. This just happens to be a month where I became like all the other moms in the neighborhood that I've always been inferior to. They do all this and still manage to go to the gym or get their hair cut and always look fresh in a new outfit. I look hairried and stressed from this past month.
SoI did get a little of my stress and frustration out with this post and I think it was a wise use of a 15 min break (ok it was a little more than 20, but I'm the boss!). Despite all this grumbling, I am dealing with my schedule that is slightly more packed than usual. And, overall, I don't have much to complain about as I am getting through it and if I had to cut something out, I just wouldn't know what to choose - its not like I can cancel a baby shower, and class reunion's come along so in-frequently and Tupperware's record breaker month is only once ayear. I just need to hand in a couple more weeks and then my to do list will be a little smaller and I might have a few less things on my agenda. I always feel busy and I do like being busy. I do want my kids to see that I am interested and involved at what they are doing at school - so I like helping out on PTA parties and such. Its a bit of a juggling act trying to fit time in to keep up my Tupperware business, but I am doing it! I can't imagine not having a big celebration for my good freind who is having a baby. I guess that is just how I am built. I do want to be involved and do want my kids to have play dates and be involved at thier school. I may not compete with some of the mom's but themore that I think of it, maybeI am not doing such a terrible job juggling activites and scheudles and making sure my kids have time for homework and play and keeping it all balanced. I'm not in the corporate rat race, but I am in a rat race nonetheless. And this in no way is meant to take anything away from working moms. I see lots of working moms that are just as devoted to their kids and take half a day off for school events and have a good balance between work and family. I can't imagine me being able to juggle full time work plus the extra activities, but there are lots of great moms that do. My hats off to you, send me some of your energy and endurance! Of course being a mom of kids with special needs takes a little extra work, so I am very fortunate that I can chose to be a stay at home mom at this point in my life.
Ok, my rambling continued even after I said my 15 mins were up, but really I will have to post now as its time to pick the boys up from school. Maybe later I can come back and spell check and proof read!
Thursday, September 18, 2008
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
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
All about Ryan and how we finally discovered he had been dealing with Sensory issues since his babyhood
When Stephen was getting close to being 2, we decided it would be nice for Stephen to have a sibling. I got pregnant right away and was overjoyed and shocked at the same time. I worried about pre-term labor again, but even with all the early contractions I never went into actual pre-term labor. Ryan was born in the spring of 2002 (just 2 weeks before he was due). Right from the start he was very alert. He looked a lot different than Stephen. He was shorter, but had more fat (of course Stephen was a premie), but even more than that his skin coloring was much lighter, his hair (peach fuzz really) was more of a strawberry blond, and his eyes were light. He was a very beautiful baby and we fell instantly in love with him. He was also a rather fussy baby who did not sleep much even the first few days after birth. Ryan wanted to be held constantly and seemed to need extra touching, patting, and constant bouncing/movement to calm him. (Although the vibrating bassinet and the swing did not usually work to calm him). I realize now in hindsight that even from the beginning he was extra sensitive to noise and light and needed so much physical contact, and needed more stimulation than other babies – he had sensory issues but backk then we didn't have any ideas as to what made him a hard baby to soothe and why the “Colic” didn’t get better at 4, 5, 6, 9 months (etc. . .). He was always on the move and could never sit still. In many ways I enjoyed having a baby that was super cuddly and super attached to mommy (would cry when I was not holding him most of the time). Stephen had been a more laid back baby and didn’t need or even want to be held all the time. Although it was exhausting to have such a needy baby, it also made me feel so needed and loved. Of course there were days when the crying jags could last several hours at midnight even as he was getting to be a year old and we would hope maybe this was just a “growth spurt” or just getting a new tooth or had gas. We were always trying to figure out why he spent so much time being fussy. When he was happy he was such a sweet and cute little baby. He’s always been a pretty rambunctious kid who didn’t seem to fear anything. He walked early – just as he was getting to be 10 months he started walking. He was short for his age, so it looked so incredible to see this little baby walking around! He was also extremely verbal. He just loved to talk to everyone and when we were out at stores or malls he was constantly walking up to strangers just to chat about any old thing. He looked at everyone as his friend and would try to make friends with everyone (and a lot of times he did). Ryan has this sweet, fun loving, wanting to be super friendly side of him since he became a toddler. Everyone would tell me how cute and precious he was and how they enjoyed talking to him. He was usually pretty good when we were out, (the new environments – he seemed to get bored with the house and toys and always needed a new person or environment to keep him stimulated or he would become super crabby). At home he would be extremely restless, always seeming to need more attention and not be able to do anything for more than a few seconds – could never sit and watch a ½ hour TV program, never finish a game we played. He also would not want to do things for himself such as eating, drinking, dressing himself, going down the stairs. And, I guess I furthered that along as he was my baby and I didn’t really like thinking about how fast he was growing up, so I generally did a lot of things for him that I should have let him do for himself. I never saw this as a sign that he lacked motor skills (grabbing a fork, zipping a coat, cutting with scissors). He loves to be silly and try new things, meet new people, but things like counting to ten and learning numbers did not come easily to him as it had to Stephen when Stephen was 2 and 3. I started wondering if there was something wrong with him or something I should be doing to help him learn his letters and numbers and help him be more focused. He could be with a group of kids at story time or Little pros ( a mom n tot program at the park district) and all the kids would sit on the mat for circle time. He would never sit on the matt till everyone went off into doing a motor skills activity or a craft. Watching him interact and play with other kids made me see that he is not quite the norm, but everyone told me he was a sweet little boy (and of course he sure was!) and he was fine but I wondered if they were right. At his 3 year check up I brought up my concerns to the doctor. She pointed to a piece of paper on the wall and pointed to the yellow section and Dr asked him what it was and he said a number. We also talked about how he couldn’t sit still for any length of time, and couldn’t focus, had a hard time with changes in routines, hard time following a 2 step direction. Our pediatrician told me I should consider having him evaluated as he would be entering pre-school in the fall and the school will do evaluations if the parent and doctor request it. It’s not as if he had any major issues, but just little things that seemed very quirky so I decided why not have him tested. It will give me peace of mind if they tell me he is fine. I went into this meeting waiting for their reassurance that my son was just fine. I expected him to say he was just high energy and everything was normal, but that is not what they told me. They told me he shows fine motor skills delay and has some mild developmental delays and the school would provide OT for him for his motor skills once pre-school began. They did not seem very concerned about his developmental delay. I hoped he would catch up once he saw all the other kids counting and naming alphabet letters. He did very well in pre-school. He had many friends and made slow but steady progress in all areas but not enough to drop his IEP. Potty training became a big issue, but finally just before turning 5 we had him potty trained. We were so happy when he was potty trained. It had become such a big hurdle for us. While he struggled with writing, drawing and counting, we saw his creative and imaginative side emerge. He started to really love trains (especially Thomas) and would make train layouts that were pretty impressive. He also started to build things with Leggos. We were thrilled to see this because not only was he staying in an activity for more than 5- 10 minutes, he was really planning and thinking and the building required using fine motor skills. He has made such wonderful progress with his fine motor skills – he can cut with scissors very well and drawing and coloring pretty good too. I worried about kindergarten and how he would do in a larger class (27 instead of 14) with one teacher (and maybe one aid versus pre-school with 2 aids). He came home and each day I would ask how school was and he would always tell me he hated it. He always loved preschool and wanted to go even on Fridays when he didn’t have school. But after a month or so he got more used to the new school and wasn’t “hating” it anymore. He made lots of friends and the teachers and aids enjoyed having him in class. Close to the end of the first semester, he started acting out more at home and at school, but overall he was still a good student – very bright and very eager. He is now 6 and going from 5-6 has been quite a year. Pre-school to kindergarten, learning to ride a bike, losing his first tooth and he has finally overcome his fear of putting his face in the water. As I mentioned, Ryan had sensory issues that I never knew about or understood until Trevor went through them. I see now why he struggled with certain things and needed more attention at times. He would over-react to certain noises. But now he is facing those things – he covers his ears when he is in a place that he finds too noisy. He is learning to swim this summer and putting his face in the water. He’s also trying gymnastics but tells me its boring. He sleeps really well now (how did that ever happen!) and doesn’t stir at every little noise. He is doing well at school despite his having focusing and attending issues. Its amazing to look back and see all the sensory issues he had and how he has outgrown a lot of them. He is still extremely afraid of bees and spiders (so am I) and going through a germ phase (can’t touch or eat things if he thinks someone else has touched it)
In his short life he is already becoming a great little boy and has overcome a lot of his sensory issues. Ryan at six is a boy who is stubborn, very energetic and lively, extremely personable and friendly, always thinking and asking questions and ready for adventures. He likes trains and cars and building things, playing with playdough and sand, he also loves collecting pokemon cards, riding his bike and playing outside– pretty much your typical 6 year old. We have just begun the new school year. He is now in first grade and I am hoping this school year goes well!
In his short life he is already becoming a great little boy and has overcome a lot of his sensory issues. Ryan at six is a boy who is stubborn, very energetic and lively, extremely personable and friendly, always thinking and asking questions and ready for adventures. He likes trains and cars and building things, playing with playdough and sand, he also loves collecting pokemon cards, riding his bike and playing outside– pretty much your typical 6 year old. We have just begun the new school year. He is now in first grade and I am hoping this school year goes well!
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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