Our Big Appointment!
We spent a whopping four hours between doctors and therapists yesterday in hopes to get more answers to Caden's development.
The list of people we saw included: Physical Therapy, Occupational Therapy, Speech Therapy, Nutritionist, Pediatrician, Audiologist and a Social Worker! It pretty much went down like this:
Pediatrician met with us first- we checked his weight, went over the meds he is on and since dad came (=happy mommy!!) he got to meet our wonderful doctor. Caden had a dip in weight that we will watch at his 6 month check-up, we increased one of his meds and got the clear on everything else. I think the drop in weight can be attributed to his tube coming out a few weeks back. We are still building his feeds back up to the volume they were before- so the doctor didn't seem too alarmed just yet, and since everything else checked out pretty well we were sent on our way to the next appointment.
Audiology put some ear buds in his ears and they measured the re-reverberation when certain tones were emitted. He passed that wonderfully and the tech seemed pretty impressed that we had managed to avoid ear infections! I have also thought that was rare, but very happy about it since I can vividly recall babysitting children with ear infections and it is the definition of miserable for all parties involved!
The social worker met with us next and explained who else we would see and that she would sit in on everything and take notes so we would have a written report to go home with and a formal one would follow in the mail. She asked a million questions and we discussed insurance and programs outside of the doctor office, his history and if we had any concerns.
PT and OT were next- two incredibly happy women came to wake my sleepy little monster and make him play on the floor. He tried to roll, tried to stand, sat up reached, grabbed, put things in his mouth, yelled, cried, had to have a few mommy breaks, diaper change and we (luckily) brought the big guns and had some "no-fail" toys that they ended up using to get him through some of the exercises that test his range of motion. We got the all clear that he was doing great. More tummy time to build his upper body and we need to encourage him to not favor one side over another but overall we are clear for another two months!
Finally- speech and nutrition came, these were the ones I was most anxious about. They reviewed how much he was eating and surprisingly said that we could continue with our old routine of increasing his total volume by 1.5 ounces every other week. I was slightly chastized for allowing him to eat food from a spoon. I knew that they would not be happy about it- but in my opnion, if my son shows interest in food and he seems to like it and it stays a happy and positive experience, I am completely fine giving him rice and baby food.
They said that I should only be allowing him to "taste" food- their definition of that is to let him play in the food and then get the food off of his own hand. The theory behind this is that he is then controlling how much he eats and since he manages to hold a binky they can assume that he has the sucking/ breathing down with that so don't overdo it. Well I don't force him to eat and there are days he could eat a whole bowl- by whole bowl I mean a total of *maybe* four tablespoons worth of rice and baby food. I am also thinking in my mind- what kind of time do you think I have that I can allow him to sit and play in his food every night. He does not get a bath every night- it is more like every two or three- there just isn't time and let's face it it's not like he is going through puberty or rolling in mud! So to assume that I have the time to sit and let him make a mess of his food is a bit insane.
Just to humor myself, I tried the little- let him play trick. It went over like a lead balloon... He screamed, he wanted nothing to do with playing in the food- if I put food on his binky he eagerly sucked it off, and was all about me using my finger to let him suck food off of- but ultimatey it was a fail. If the kidwants to eat- I will continue to give him small bites off of a spoon. I am the mom and bottom line is I feel that is the best thing for him- he is happy, it makes the experience positive and it makes for a better routine. I know the speech woman had to realize that while I know she can't condone what I was/am doing due to the fact that he had such an unprotected airway before- I would continue doing what I felt is best for him.
My ultimate fear is that he will develop an oral aversion- I have read up on this on countless blogs, journals and websites and it is pretty common in children that are completely or partially g-tube fed- Caden is technically 100% g-tube. He gets all required nutrition through his tube. This is why I advocated on my own to start allowing him to try foods and cereals. So far we know he does NOT like sweet potatoes, but loves: bananas, apples, prunes and green beans. Now- I know what his limits are. When I feed him, it is not about him eating to get nutrients- it is about him getting a taste and feel for having food and substance in his mouth. If at any point he shows signs of discomfort or disinterest- we stop- end of story. I am doing everything to make him want to eat and want to have things by mouth. We encourage him to use teethers, toys, blankets, and whatever article of clothing we have on that he deems tasty.
Through our journey with doctors- my husband and I are on the same page that there are times you just need to do what you feel is best. I remind myself all the time that maybe if I had been pushy earlier on we would have taken care of or found Caden's problem earlier on.
SO- bottom line- our appointment was a success, and at our six month check-up next week we will have the green light to schedule another feeding evaluation to see how he does with thicker foods and if he has improved any. Just another day in the adventures of mommyhood!
The list of people we saw included: Physical Therapy, Occupational Therapy, Speech Therapy, Nutritionist, Pediatrician, Audiologist and a Social Worker! It pretty much went down like this:
Pediatrician met with us first- we checked his weight, went over the meds he is on and since dad came (=happy mommy!!) he got to meet our wonderful doctor. Caden had a dip in weight that we will watch at his 6 month check-up, we increased one of his meds and got the clear on everything else. I think the drop in weight can be attributed to his tube coming out a few weeks back. We are still building his feeds back up to the volume they were before- so the doctor didn't seem too alarmed just yet, and since everything else checked out pretty well we were sent on our way to the next appointment.
Audiology put some ear buds in his ears and they measured the re-reverberation when certain tones were emitted. He passed that wonderfully and the tech seemed pretty impressed that we had managed to avoid ear infections! I have also thought that was rare, but very happy about it since I can vividly recall babysitting children with ear infections and it is the definition of miserable for all parties involved!
The social worker met with us next and explained who else we would see and that she would sit in on everything and take notes so we would have a written report to go home with and a formal one would follow in the mail. She asked a million questions and we discussed insurance and programs outside of the doctor office, his history and if we had any concerns.
PT and OT were next- two incredibly happy women came to wake my sleepy little monster and make him play on the floor. He tried to roll, tried to stand, sat up reached, grabbed, put things in his mouth, yelled, cried, had to have a few mommy breaks, diaper change and we (luckily) brought the big guns and had some "no-fail" toys that they ended up using to get him through some of the exercises that test his range of motion. We got the all clear that he was doing great. More tummy time to build his upper body and we need to encourage him to not favor one side over another but overall we are clear for another two months!
Finally- speech and nutrition came, these were the ones I was most anxious about. They reviewed how much he was eating and surprisingly said that we could continue with our old routine of increasing his total volume by 1.5 ounces every other week. I was slightly chastized for allowing him to eat food from a spoon. I knew that they would not be happy about it- but in my opnion, if my son shows interest in food and he seems to like it and it stays a happy and positive experience, I am completely fine giving him rice and baby food.
They said that I should only be allowing him to "taste" food- their definition of that is to let him play in the food and then get the food off of his own hand. The theory behind this is that he is then controlling how much he eats and since he manages to hold a binky they can assume that he has the sucking/ breathing down with that so don't overdo it. Well I don't force him to eat and there are days he could eat a whole bowl- by whole bowl I mean a total of *maybe* four tablespoons worth of rice and baby food. I am also thinking in my mind- what kind of time do you think I have that I can allow him to sit and play in his food every night. He does not get a bath every night- it is more like every two or three- there just isn't time and let's face it it's not like he is going through puberty or rolling in mud! So to assume that I have the time to sit and let him make a mess of his food is a bit insane.
Just to humor myself, I tried the little- let him play trick. It went over like a lead balloon... He screamed, he wanted nothing to do with playing in the food- if I put food on his binky he eagerly sucked it off, and was all about me using my finger to let him suck food off of- but ultimatey it was a fail. If the kidwants to eat- I will continue to give him small bites off of a spoon. I am the mom and bottom line is I feel that is the best thing for him- he is happy, it makes the experience positive and it makes for a better routine. I know the speech woman had to realize that while I know she can't condone what I was/am doing due to the fact that he had such an unprotected airway before- I would continue doing what I felt is best for him.
My ultimate fear is that he will develop an oral aversion- I have read up on this on countless blogs, journals and websites and it is pretty common in children that are completely or partially g-tube fed- Caden is technically 100% g-tube. He gets all required nutrition through his tube. This is why I advocated on my own to start allowing him to try foods and cereals. So far we know he does NOT like sweet potatoes, but loves: bananas, apples, prunes and green beans. Now- I know what his limits are. When I feed him, it is not about him eating to get nutrients- it is about him getting a taste and feel for having food and substance in his mouth. If at any point he shows signs of discomfort or disinterest- we stop- end of story. I am doing everything to make him want to eat and want to have things by mouth. We encourage him to use teethers, toys, blankets, and whatever article of clothing we have on that he deems tasty.
 |
| The apple is always a hit with him! |
Through our journey with doctors- my husband and I are on the same page that there are times you just need to do what you feel is best. I remind myself all the time that maybe if I had been pushy earlier on we would have taken care of or found Caden's problem earlier on.
SO- bottom line- our appointment was a success, and at our six month check-up next week we will have the green light to schedule another feeding evaluation to see how he does with thicker foods and if he has improved any. Just another day in the adventures of mommyhood!
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