My sweet pea is tired. He is not sleeping well at night and he is showing me that his back is hurting. Poor sweety just holds his back. Our wonderful doctor, actually the one who resussated him at two weeks old before he was brought to us, gave me some suggestions that are helping. It is time for another expansion surgery.
At the Marcus Institute we are now working on chewing and closing lips. The protocol is much the same, a three step, but complicated for me for some reason. I think because I am not sure when and where it fits in the first protocol. Our goal in the next two weeks is chewing and starting to self feed.
Wow that would be awesome.
We ran into so many snags since I posted last. The doctor wrote a script for duocal to add to his applesauce and we sent it to his medical supplier. They in turn assumed that since he was eating he did not need the G tube supplies and the insurance would not pay for them. HA! It took three doctors and a lot of calls to them straight. I promise I faxed a letter to them at least three times before they acknowledged they had it. Great Day!
We did finally get a shipment of his supplies. He is consuming 50% of his caloric needs on a good day. When he is not feeling well he is dropping to about 30%.
He is changing, growing up. Even his face is different in the past month. I think eating has slimmed his face. I keep checking to make sure it isnt weight loss. I think my baby is growing up.
We go in for a sedated hearing test next month and I am sure the expansion surgery is coming up in the next month too. We were given the not so great news that he will need another VEPTR II implant recently. That will come at the end of the year. Thats like getting hit by a truck...it takes so long to recover for him.
When we decided to fight for the VEPTR II implant in the first place, it was to extend his life. When you are told that your child will not survive his 10th birthday, you start fighting. Now we are faced with the same mountian again. When I rub his back and feel the implant and scars I wonder "how much more will he endure to grow up?" He is such a loving and happy boy. He deserves so much better.
Showing posts with label Atlanta 09. Show all posts
Showing posts with label Atlanta 09. Show all posts
Saturday, April 18, 2009
Thursday, April 9, 2009
Texture...no drinking today
We have decided to move on with texture and wait on the drinking. The general idea is that as he swallows more that the swallow study will show improved action. When that happens, and it is not honey thick liquids, we will work on swallowing.
Everyday during one session we will work on chewing. The other three sessions will be focused on accepting texture.
We have three weeks left...
The first session with chewing was like his feeding at home. Refusal and constant fussing with jerking his head away. There was not any choking because he was allowed to escape the bites.
The frist session with textures included going to wet ground with everything in a less fine texture than he was used to. According to the plan, they will allow him to progress to lumpier (is that a word?) foods. In the natural progression I think that would induce chewing on its own. Right now he is frowing and doing some gagging as he is trying to get used to it. The feel is different in his mouth. I do remember the same behavior with pureed when pureed was put in his mouth.
I am so pleased to note that he swallowed all of his wet ground bites today...
One more day this week and we have the weekend! YAY! Me and lil man may go to the zoo if we can find it. The address is Grant Park so my trusty Tom Tom won't be of any help. Anyone know how to get to the Zoo here? He loves the animals and we are ready for some nice weather!
Right now the pollen count has been up. It doesnt affect much but when he has itchy face and eyes he is grumpy! I am hoping that will be down by this weekend and we can hit the town!
Everyday during one session we will work on chewing. The other three sessions will be focused on accepting texture.
We have three weeks left...
The first session with chewing was like his feeding at home. Refusal and constant fussing with jerking his head away. There was not any choking because he was allowed to escape the bites.
The frist session with textures included going to wet ground with everything in a less fine texture than he was used to. According to the plan, they will allow him to progress to lumpier (is that a word?) foods. In the natural progression I think that would induce chewing on its own. Right now he is frowing and doing some gagging as he is trying to get used to it. The feel is different in his mouth. I do remember the same behavior with pureed when pureed was put in his mouth.
I am so pleased to note that he swallowed all of his wet ground bites today...
One more day this week and we have the weekend! YAY! Me and lil man may go to the zoo if we can find it. The address is Grant Park so my trusty Tom Tom won't be of any help. Anyone know how to get to the Zoo here? He loves the animals and we are ready for some nice weather!
Right now the pollen count has been up. It doesnt affect much but when he has itchy face and eyes he is grumpy! I am hoping that will be down by this weekend and we can hit the town!
Wednesday, April 8, 2009
What a 'pick me up' !
It was a joy to get a call from a long distance friend tonight. I was really at the point of being a grump!
How things can be put in a clear light when you can talk them out.
I am home sick and tired of taking care of business long distance. My dear husband has two piles of clothes from what I hear...the clean one outside the dryer and the dirty one outside the washer. Rumors are that they are becoming one.
He says to me...you need to hire a maid! LOL! RIGHT~ like that is going to happen!
Hope, you helped me step outside of myself and see the humor.
All the laundry, bills and construction will wait. Ty is worth every moment and he deserves this. And dad will not be naked in the world...he may wear mismatched socks or (heaven forbid) a wrinkled shirt to work but life will go on!
Dad did look kind of rumpled at the childrens museum last weekend. You all should have seen this pair playing! He is a daddy's boy, this one!
How things can be put in a clear light when you can talk them out.
I am home sick and tired of taking care of business long distance. My dear husband has two piles of clothes from what I hear...the clean one outside the dryer and the dirty one outside the washer. Rumors are that they are becoming one.
He says to me...you need to hire a maid! LOL! RIGHT~ like that is going to happen!
Hope, you helped me step outside of myself and see the humor.
All the laundry, bills and construction will wait. Ty is worth every moment and he deserves this. And dad will not be naked in the world...he may wear mismatched socks or (heaven forbid) a wrinkled shirt to work but life will go on!
Dad did look kind of rumpled at the childrens museum last weekend. You all should have seen this pair playing! He is a daddy's boy, this one!
I have "Protocol Drifting"
Yes they have a name for what is happening to me. Today at breakfast I fed him. He doesnt really care if I say "good job taking your bite" or "hey buddy, you rock!" but dont tell them that.
Ok who am I to argue with what they say works? After all we tried for two and a half years to get him to eat and we didnt make it. Now he is eating so I need to straighten up. Protocol drift is not what I want on his chart LOL! Non compliant is not a good thing in the feeding clinic.
BK mentioned something interesting...it relates. I thought that Ty was not going to comprehend what they were saying. I didnt think he would understand the rules. You know the "green card rules" and such. Well when I talked to the doctor, she said it did not matter if he understood. She said that he would begin to associate what was happening to what was being said. She also said that he understands more than I think. Ok I thought she was nuts. But who am I to say...he is eating.
Now he responds to the "show me" and "take your bite" by opening his mouth. And it seems he has no preferences in taste. Isnt that unusual? His only issue is with thicker foods like pureed waffles and pureed peanut butter and jelly sandwiches. Yup they do puree those things! And get this...they add the butter and syurp too!
It seems the thicker foods make him work harder to clean his tongue and move the food back.
Oh and another term that comes to mind that is used is "fading". For instance they used fading to move from a dry spoon to a dipped spoon to a pea sized bite. Fading over a two week period. Talk about patience.
Now to the part I dont like. They are trying to get him to drink out of a cup. Keep in mind that he has to have honey thick foods. How fast does a drink that thick flow? Well they are giving him 1/8 of an ounce in a cut cup and holding it to his face while waiting for it to pour in his mouth. This I do not like and I have pointed out that he does not know what they want and it is unbearable to sit with a cup in your face waiting for a drop of honey thick drink to come out. WHEN someone else is holding it to your face! They insisted that this is going to work and even scraped the "drink" to the edge of the cup. Who am I to say. I dont think this one is well thought out at this point. I say fill up the cup and pour instead of waiting for a tiny bit to run out of the cup. Give him a break! Its a new world for him.
This is week five...can you tell mom is getting tired and irritable?
Ok who am I to argue with what they say works? After all we tried for two and a half years to get him to eat and we didnt make it. Now he is eating so I need to straighten up. Protocol drift is not what I want on his chart LOL! Non compliant is not a good thing in the feeding clinic.
BK mentioned something interesting...it relates. I thought that Ty was not going to comprehend what they were saying. I didnt think he would understand the rules. You know the "green card rules" and such. Well when I talked to the doctor, she said it did not matter if he understood. She said that he would begin to associate what was happening to what was being said. She also said that he understands more than I think. Ok I thought she was nuts. But who am I to say...he is eating.
Now he responds to the "show me" and "take your bite" by opening his mouth. And it seems he has no preferences in taste. Isnt that unusual? His only issue is with thicker foods like pureed waffles and pureed peanut butter and jelly sandwiches. Yup they do puree those things! And get this...they add the butter and syurp too!
It seems the thicker foods make him work harder to clean his tongue and move the food back.
Oh and another term that comes to mind that is used is "fading". For instance they used fading to move from a dry spoon to a dipped spoon to a pea sized bite. Fading over a two week period. Talk about patience.
Now to the part I dont like. They are trying to get him to drink out of a cup. Keep in mind that he has to have honey thick foods. How fast does a drink that thick flow? Well they are giving him 1/8 of an ounce in a cut cup and holding it to his face while waiting for it to pour in his mouth. This I do not like and I have pointed out that he does not know what they want and it is unbearable to sit with a cup in your face waiting for a drop of honey thick drink to come out. WHEN someone else is holding it to your face! They insisted that this is going to work and even scraped the "drink" to the edge of the cup. Who am I to say. I dont think this one is well thought out at this point. I say fill up the cup and pour instead of waiting for a tiny bit to run out of the cup. Give him a break! Its a new world for him.
This is week five...can you tell mom is getting tired and irritable?
Tuesday, April 7, 2009
Protocol 101
Okay...here goes!
First of all, they say the big thing is to ignore bad behavior. Straight face and no attention.
See I tend to tell him "stop","dont do that", or when he yells, I say "now Ty" and stuff like that. When he threw something at the food or wiped his mouth out with the towel I used to have to have to try to feed him, it was funny to the kids or DH but remember...now they must ignore bad behavior...that means if they cant cooporate then they cant be there.
We started off at home with an empty spoon, remember? I literally fed him with an empty spoon.
At first he would fuss and bat it away. He would turn his head but we kept going. It turned into a game and he accepted the spoon. The child even force fed his toys with an empty spoon. I felt bad for doing it but he came to accept it. It was practice for the big game.
Slowly I added flavor. I dipped the spoon into grape juice. He fought and he batted the spoon but after a while he accepted it. We would have dry spoon bites and then I would throw in a dipped spoon.
When we got here they began almost the same process. After the toy selection it was dry spoons.
He has four sessions a day within an 7 hour time frame. Three 45 minute sessions and one 30 minute session. He is allowed a two hour nap or break in the day. He naps the entire two hours. He has a session and then a 45 minute break. Then another short session then another break. It goes on all day. During the break we see the nurse, nutrition, social workers (to see how we are coping with this schedule and the emotional results of eating no doubt!) and OT. We are busy all day!
Each session they play with him after his choice of toy. The toys are feeding toys only and he can only play with them there. Everyday for four sessions they would bring the dry spoon to his mouth and say "take your bite Ty" and hold it there until he would open and they would go through the act of giving him a bite. He had thirty seconds between "play bites". When he would get the "pretend" bite they would say "good job taking your bite". If he closed his lips on the spoon they would also say "I like the way you closed your lips on the spoon". And while waiting the thirty seconds they play...
They did this for a week. It drove me crazy...but he didnt mind it. He kind of liked it.
They next started waving and showing him a green card at the beginning telling him this:
I am going to give you a bite and if you bat it or turn your head, I am going to keep the spoon there until you take it. If you take it I am going to say "good job taking your bite". If you swallow it I am going to tell you "good job swallowing your bite" and if you spit it out its OK for now.
Then he would choose between two of the toys. Next they would offer dry bites and suddenly dip the spoon in food. It would be so many bites with the dry spoon and then a dipped spoon bite. They said the same thing. "Good job taking your bite Ty Christian". When his negative reactions slowed down they increased the number of dipped bites.
When it was continious dipped spoon bites they began the next session with dipped spoons and added increased pea sized bites just as slowly. They started each session with a choice of toys and the green card rules. They added "show me" thirty seconds after he accepted the spoon and waited a few seconds. Then they asked "show me like this" and opened their mouths wide. If he did not copy them, they took a coated baby spoon and put it to his mouth and he opened for them when it touched his lips. Sometimes he had food in his mouth he had not drooled out. They would then say "you need to swallow your bite".
He never swallowed these first bites. They contined on until they had run the trial out for a few days. When he did not swallow they decided to look at placement in his mouth. Go back and read March posts...I go into detail about how they moved up to the nuk brush dry, dipped and then with food.
Again they waved the green card and recited the rules except they used the nuk brush to demonstrate instead of the spoon. I thought they were nuts...I mean did he understand? They dipped the food up on the spoon kind of in a bunch and rolled the nuk brush so that the food stayed in a lump on top of the nuk brush. They then said "take your bite" and when he opened they kind of rolled the nuk brush on to the center back of his tongue to place the food. It helped a lot that I had used a nuk brush for a long time in his mouth so he knew what it was. It did not trigger a gag. It was not far enough back.
What it did trigger was a swallow!
So the protocol was as follows:
1. offer choice of toy (toys can only be played with at feeding and must be favorites)
2. recite the rules (there is a blue card rule that I will share soon)
3. Say "Take your bite"
4. When bite is accepted say "good job taking your bite"
5. after 30 seconds say "show me"
6. after 5 seconds say "show me like this" and demonstrate an open mouth
7. if the child does not open use a baby spoon to the mouth to open
8. if the child opens say either "you need to swallow your bite" or "good job swallowing your bite"
This is so simple its cool. He is on auto now. He opens right away and its seems with out thinking about it. I mean he plays and then when I say it he opens up with out looking up. WOW...
The blue card set of rules are the same except they say "when I give you your bite and you spit it out I am going to scoop it up like this (they demonstrate with a dry spoon) and put it back in your mouth".
After he did so well with the nuk brush and started swallowing more bites they maintained that for a week...I was beginning to think they were going to send me home using the nuk brush for feeding. UGH!
I was so happy they went back to the spoon. He again swallowed and didnt even notice it was a spoon instead of a nuk.
They then started placement trials again. On the right side, in front and on the left side. It seems he handled the food better on the sides than the front. I didnt care as long as it was a spoon again. By this point I was ready for texture and increasing the amount of food on the spoon. We were in week four...I wanted to start working on chewing. Whoa!
Two things I have learned. You cannot rush this. The long time using the dry and dipped spoon was necessary. The length of time using the nuk was necessary. Also slowly increasing the amount of food on the spoon is necessary. Each step is an opportunity for him to learn to use his mouth.
Get this...because he was tube fed, he missed important developmental stages in critical points that contribute to speech and ability to chew. We have to go through this slowly allowing him to catch up.
The payback will be increased verbalization and reduced (no more?) drooling. I am told he will learn to move and swallow his saliva as he learns to move food around in his mouth...it makes sense now.
I have a more to share and will soon. I need to post every day but lil man keeps me so busy. I have new respect for single parent families. Being here in Atlanta alone with him is not the easiest thing I have done, altho I must say I love our time together. Dad, are you jealous? Come on up! LOL!
First of all, they say the big thing is to ignore bad behavior. Straight face and no attention.
See I tend to tell him "stop","dont do that", or when he yells, I say "now Ty" and stuff like that. When he threw something at the food or wiped his mouth out with the towel I used to have to have to try to feed him, it was funny to the kids or DH but remember...now they must ignore bad behavior...that means if they cant cooporate then they cant be there.
We started off at home with an empty spoon, remember? I literally fed him with an empty spoon.
At first he would fuss and bat it away. He would turn his head but we kept going. It turned into a game and he accepted the spoon. The child even force fed his toys with an empty spoon. I felt bad for doing it but he came to accept it. It was practice for the big game.
Slowly I added flavor. I dipped the spoon into grape juice. He fought and he batted the spoon but after a while he accepted it. We would have dry spoon bites and then I would throw in a dipped spoon.
When we got here they began almost the same process. After the toy selection it was dry spoons.
He has four sessions a day within an 7 hour time frame. Three 45 minute sessions and one 30 minute session. He is allowed a two hour nap or break in the day. He naps the entire two hours. He has a session and then a 45 minute break. Then another short session then another break. It goes on all day. During the break we see the nurse, nutrition, social workers (to see how we are coping with this schedule and the emotional results of eating no doubt!) and OT. We are busy all day!
Each session they play with him after his choice of toy. The toys are feeding toys only and he can only play with them there. Everyday for four sessions they would bring the dry spoon to his mouth and say "take your bite Ty" and hold it there until he would open and they would go through the act of giving him a bite. He had thirty seconds between "play bites". When he would get the "pretend" bite they would say "good job taking your bite". If he closed his lips on the spoon they would also say "I like the way you closed your lips on the spoon". And while waiting the thirty seconds they play...
They did this for a week. It drove me crazy...but he didnt mind it. He kind of liked it.
They next started waving and showing him a green card at the beginning telling him this:
I am going to give you a bite and if you bat it or turn your head, I am going to keep the spoon there until you take it. If you take it I am going to say "good job taking your bite". If you swallow it I am going to tell you "good job swallowing your bite" and if you spit it out its OK for now.
Then he would choose between two of the toys. Next they would offer dry bites and suddenly dip the spoon in food. It would be so many bites with the dry spoon and then a dipped spoon bite. They said the same thing. "Good job taking your bite Ty Christian". When his negative reactions slowed down they increased the number of dipped bites.
When it was continious dipped spoon bites they began the next session with dipped spoons and added increased pea sized bites just as slowly. They started each session with a choice of toys and the green card rules. They added "show me" thirty seconds after he accepted the spoon and waited a few seconds. Then they asked "show me like this" and opened their mouths wide. If he did not copy them, they took a coated baby spoon and put it to his mouth and he opened for them when it touched his lips. Sometimes he had food in his mouth he had not drooled out. They would then say "you need to swallow your bite".
He never swallowed these first bites. They contined on until they had run the trial out for a few days. When he did not swallow they decided to look at placement in his mouth. Go back and read March posts...I go into detail about how they moved up to the nuk brush dry, dipped and then with food.
Again they waved the green card and recited the rules except they used the nuk brush to demonstrate instead of the spoon. I thought they were nuts...I mean did he understand? They dipped the food up on the spoon kind of in a bunch and rolled the nuk brush so that the food stayed in a lump on top of the nuk brush. They then said "take your bite" and when he opened they kind of rolled the nuk brush on to the center back of his tongue to place the food. It helped a lot that I had used a nuk brush for a long time in his mouth so he knew what it was. It did not trigger a gag. It was not far enough back.
What it did trigger was a swallow!
So the protocol was as follows:
1. offer choice of toy (toys can only be played with at feeding and must be favorites)
2. recite the rules (there is a blue card rule that I will share soon)
3. Say "Take your bite"
4. When bite is accepted say "good job taking your bite"
5. after 30 seconds say "show me"
6. after 5 seconds say "show me like this" and demonstrate an open mouth
7. if the child does not open use a baby spoon to the mouth to open
8. if the child opens say either "you need to swallow your bite" or "good job swallowing your bite"
This is so simple its cool. He is on auto now. He opens right away and its seems with out thinking about it. I mean he plays and then when I say it he opens up with out looking up. WOW...
The blue card set of rules are the same except they say "when I give you your bite and you spit it out I am going to scoop it up like this (they demonstrate with a dry spoon) and put it back in your mouth".
After he did so well with the nuk brush and started swallowing more bites they maintained that for a week...I was beginning to think they were going to send me home using the nuk brush for feeding. UGH!
I was so happy they went back to the spoon. He again swallowed and didnt even notice it was a spoon instead of a nuk.
They then started placement trials again. On the right side, in front and on the left side. It seems he handled the food better on the sides than the front. I didnt care as long as it was a spoon again. By this point I was ready for texture and increasing the amount of food on the spoon. We were in week four...I wanted to start working on chewing. Whoa!
Two things I have learned. You cannot rush this. The long time using the dry and dipped spoon was necessary. The length of time using the nuk was necessary. Also slowly increasing the amount of food on the spoon is necessary. Each step is an opportunity for him to learn to use his mouth.
Get this...because he was tube fed, he missed important developmental stages in critical points that contribute to speech and ability to chew. We have to go through this slowly allowing him to catch up.
The payback will be increased verbalization and reduced (no more?) drooling. I am told he will learn to move and swallow his saliva as he learns to move food around in his mouth...it makes sense now.
I have a more to share and will soon. I need to post every day but lil man keeps me so busy. I have new respect for single parent families. Being here in Atlanta alone with him is not the easiest thing I have done, altho I must say I love our time together. Dad, are you jealous? Come on up! LOL!
Thursday, April 2, 2009
Even out of a set protocol now!
Ok...Yesterday I asked if I could feed him at night and I was told yes...as long as I didnt use the "protocol" (I will post that later) or the spoons they are using.
So good mom that I am, I have 30 or so different spoons because at one point I really thought that a different spoon might be the trick. Or maybe I looked at them and thought "oh this is why he wont eat...I dont have THIS spoon". Go figure!
Anyway, I get back to the RMH and I get out my trusty z vibe flexible spoon (yup I have them all, no kidding) and start some tongue presses to warm him up and then dive right into the mango!
He ate all I had in the bowl. I cant tell you the good feeling that I had sitting there in the dining room feeding him. People walked by and saw me sitting there with a silly grin on my face and tears. They dont know me here so I just confuse them. I mean, do you help the crazy woman sitting there smiling and crying?
Anyone who knows me is already shaking their heads. I cry a lot for some reason.
Well he eats the mango. The bowl is empty and I have the deep desire to continue feeding him but control myself. Its not running across the room with a cookie leaving crumbs everywhere like I dreamed about but its Ty sitting there with a mango smeared face smiling at me.
Pureed today, wet ground tomorrow...who knows next week! We have three weeks and four days to go at the Marcus institute.
Today I confessed that he ate like a champion eater and finished the mango. I really wanted to be in that room feeding him, I wanted to do this now. By noon I took the spoon. He was great! Tonight they sent some food here with me to use. Once again I asked could I feed him more and I got the same answer. Again he ate. This time wet ground. That is progress ladies and gentlemen! Progress!
I am pushing for chewing therapy. They insist I am rushing. He is at the infant stage right now. He missed a lot of development in the eating arena when he got the g tube. It was 17 people and 2 1\2 years later and now he eats because of this program.
WOW
So good mom that I am, I have 30 or so different spoons because at one point I really thought that a different spoon might be the trick. Or maybe I looked at them and thought "oh this is why he wont eat...I dont have THIS spoon". Go figure!
Anyway, I get back to the RMH and I get out my trusty z vibe flexible spoon (yup I have them all, no kidding) and start some tongue presses to warm him up and then dive right into the mango!
He ate all I had in the bowl. I cant tell you the good feeling that I had sitting there in the dining room feeding him. People walked by and saw me sitting there with a silly grin on my face and tears. They dont know me here so I just confuse them. I mean, do you help the crazy woman sitting there smiling and crying?
Anyone who knows me is already shaking their heads. I cry a lot for some reason.
Well he eats the mango. The bowl is empty and I have the deep desire to continue feeding him but control myself. Its not running across the room with a cookie leaving crumbs everywhere like I dreamed about but its Ty sitting there with a mango smeared face smiling at me.
Pureed today, wet ground tomorrow...who knows next week! We have three weeks and four days to go at the Marcus institute.
Today I confessed that he ate like a champion eater and finished the mango. I really wanted to be in that room feeding him, I wanted to do this now. By noon I took the spoon. He was great! Tonight they sent some food here with me to use. Once again I asked could I feed him more and I got the same answer. Again he ate. This time wet ground. That is progress ladies and gentlemen! Progress!
I am pushing for chewing therapy. They insist I am rushing. He is at the infant stage right now. He missed a lot of development in the eating arena when he got the g tube. It was 17 people and 2 1\2 years later and now he eats because of this program.
WOW
Subscribe to:
Posts (Atom)
