Artie did not recongnize the room because it was after dark when we got home. It was sad at first. Then he found one of his toys and one discovery led to another. Within an hour he was home and knew it. He was delighted.
I have to pause here and mention that DH made good on his promise to get started on the cabinets. I didnt recongnize the house either. Sadly I was too late to stop his good intentions. Clean up begins tomorrow at 7am. Thank goodness for friends.
I was delighted to be done and leave the Institute (sounds ominous doesnt it? Sort of like a gothic thing or a whisper "did you hear she was at an institute for 8 weeks?"), but I will miss so many!
Artie will greatly miss his dear friend and playmate GB. There was a real love/hate relationship going on there. He couldnt stand to be without her, but he loved to make her fuss. It was the classic boy chase girl scene on a daily basis with these kids! She would bring a new toy and get close to him, smiling, and he would go for it and then it was on!
A true princess to the end, Miss G helped with the cake and refused to allow pictures. No paparazzi please! Mom, remember your promise to send some!
Artie will miss his buddy J. Although older, J was always so gentle with Artie. They played chase and giggled alot when Artie wasnt turning on and off the TV or picking at Miss G! Yup it was within his reach!
And his new friend D! D was new on the scene but I am sure they would have been fast friends!
The trip home was quiet and uneventful. I am sad to report that I missed an invitation to visit Miss Sofia and hold her and show off Artie's new eating skills! I unplugged my computer and packed on Wednesday night and missed the email.
HOWEVER Miss Sofia, if you are still up for company we will be traveling again on the 14th of this month and we will come within 5 miles of your house!
Now to go to my room and go to my bed! Think I will sleep!
Thursday, April 30, 2009
New terminology...lets rewrite the book!
I am home.
Eight weeks...you begin to go stir crazy in the parents lounge!
A new friend and I had to. I mean the terminology was lacking. There were so many new phrases that they had to come up with to describe "not eating" which is non compliant, "resistance" which is a CI, "spitting the food out and mom scooping it up and giving it back" which is expelling and representing"...and a lot more. How quickly I forgot!
But they did not have one for over feeding a child. I mean if you have never eaten solids before and you start swallowing and suddenly you are getting meals 45 minutes apart and WOW are they feeding you and YOU ARE TOO FULL, what do you call it? Especially when you are about to EAT AGAIN in 45 minutes! "Stuff the baby" is our term!
Another fun one was protocol drift...I think that was when I didnt do what I was told to. LOL! Have they met me? Generally I am compliant but after 5 weeks and a few episodes of "stuff the baby" and a tummy ache, I am non compliant.
Now it seems that most behaviors at the table are "escapes" from eating. Like if he is fed too much or too fast and throws up, that is an escape tactic? PPFFFFTTTT! OK. I am non compliant on that one.
Oh yes, and give me a child what didnt sleep one night and a morning with out any coffee! Oh and top that off with me coming in to a suprise protocol change that I get to do! Oh wait! I have one better...give me a medical supply company that feels my order will no longer be covered by my insurance because Artie swallows. Lets not mention that he has a G tube and need honey thick liquids to swallow. Or that he is NOT getting his nutritional needs met yet. Boy that was a fun week!
All joking and complaining aside...Artie is where he is today because of the great staff there. He is eating and beginning to chew and the rascal actually slurpped on a straw today! That being said, I have to add that they did it with a mama bear watching over him. They were amazingly respectful of that.
Did I mention that I am too old to have adopted? Eight weeks is a long time!
The gift I gave the good doctor was chamomile tea for her office...just in case she gets another parent like me...grrrrr~
Eight weeks...you begin to go stir crazy in the parents lounge!
A new friend and I had to. I mean the terminology was lacking. There were so many new phrases that they had to come up with to describe "not eating" which is non compliant, "resistance" which is a CI, "spitting the food out and mom scooping it up and giving it back" which is expelling and representing"...and a lot more. How quickly I forgot!
But they did not have one for over feeding a child. I mean if you have never eaten solids before and you start swallowing and suddenly you are getting meals 45 minutes apart and WOW are they feeding you and YOU ARE TOO FULL, what do you call it? Especially when you are about to EAT AGAIN in 45 minutes! "Stuff the baby" is our term!
Another fun one was protocol drift...I think that was when I didnt do what I was told to. LOL! Have they met me? Generally I am compliant but after 5 weeks and a few episodes of "stuff the baby" and a tummy ache, I am non compliant.
Now it seems that most behaviors at the table are "escapes" from eating. Like if he is fed too much or too fast and throws up, that is an escape tactic? PPFFFFTTTT! OK. I am non compliant on that one.
Oh yes, and give me a child what didnt sleep one night and a morning with out any coffee! Oh and top that off with me coming in to a suprise protocol change that I get to do! Oh wait! I have one better...give me a medical supply company that feels my order will no longer be covered by my insurance because Artie swallows. Lets not mention that he has a G tube and need honey thick liquids to swallow. Or that he is NOT getting his nutritional needs met yet. Boy that was a fun week!
All joking and complaining aside...Artie is where he is today because of the great staff there. He is eating and beginning to chew and the rascal actually slurpped on a straw today! That being said, I have to add that they did it with a mama bear watching over him. They were amazingly respectful of that.
Did I mention that I am too old to have adopted? Eight weeks is a long time!
The gift I gave the good doctor was chamomile tea for her office...just in case she gets another parent like me...grrrrr~
Tuesday, April 28, 2009
Two more days...self feeding and friends
Two more days and we graduate!
We have gone as far as we can in 8 weeks. Artie has moved from not eating to eating wet ground and working on chewing and self feeding.
Tomorrow his nurse comes to be trained. I look forward to getting that done and heading home.
I will post more on the protocol of chewing and self feeding later...
Artie has grown. Since he has been here he has added at least 15 new signs to his bank of sign language. He has learned to play new games and now speaks 5 words on a regular basis, when he is in the mood. Dont let me confuse you...it is never NEVER on demand. I am excited for him to return to his little school. He is moving up to the 3-5 year old class. Now, mind you, I am nervous about this. He doesn't have much upper body strength and I worry about his back and accidents but I feel the teachers will look out for him and the ratio is supposed to be 1:3. He is growing up!
We are lining up our medical schedule for him for the rest of the year and thinking about taking a mini vacation before his major surgery. Any ideas?
So many of the kind people we have met and come to know have gone home or on to another hospital. So many are promising to stay in contact. I look forward to that. Our lives are richer for having the experience of staying here this long.
We have gone as far as we can in 8 weeks. Artie has moved from not eating to eating wet ground and working on chewing and self feeding.
Tomorrow his nurse comes to be trained. I look forward to getting that done and heading home.
I will post more on the protocol of chewing and self feeding later...
Artie has grown. Since he has been here he has added at least 15 new signs to his bank of sign language. He has learned to play new games and now speaks 5 words on a regular basis, when he is in the mood. Dont let me confuse you...it is never NEVER on demand. I am excited for him to return to his little school. He is moving up to the 3-5 year old class. Now, mind you, I am nervous about this. He doesn't have much upper body strength and I worry about his back and accidents but I feel the teachers will look out for him and the ratio is supposed to be 1:3. He is growing up!
We are lining up our medical schedule for him for the rest of the year and thinking about taking a mini vacation before his major surgery. Any ideas?
So many of the kind people we have met and come to know have gone home or on to another hospital. So many are promising to stay in contact. I look forward to that. Our lives are richer for having the experience of staying here this long.
Friday, April 24, 2009
"You do it"
Today I was able to start chewing therapy with him. I was not sure about proceedure and protocol but I knew I could motivate him. Taking away the toy after 20 seconds does not motivate my boy to cooperate. Now we know.
The protocol is as follows:
I am going to give you your bite and tell you "take your bite, Artie".
When you take your bite I am going to tell you to chew. When you chew 10 times I am going to tell you "good job chewing" and you get the toy to play with. If you do not chew I am going to tell you "You need to chew" and if you still dont I am going to say "chew like this" and show you with this straw. Then I will say "you do it". If you still dont, I am going to hold the chewy in your mouth until you chew and help like this (pressing lightly on his chin} and when you chew, you get the toy.
Now this did not make him happy. So when I got in there I slowly developed "protocol drift"!
We ditched the toy. After the first session I just did not put the toy back on his tray. Taking it was not working. I was thinking they were going to fuss at me any moment. Non compliant mom...tisk tisk!
I loved on him instead. For the first few times he fussed during the 20 seconds after he chewed and I kept taking his face in my hands. We leaned in with our heads touching and I told him what an awesome little guy he is. He calmed and the fussing stopped. Then suddenly during one 20 second break he grinned at me and I knew we could do this. The second set of chewing he watched my face. It was pushed to the point of me demonstrating the chew and he followed through. By the end of the session he was calm and chewing most of the time. When he didnt chew he watched me. I moved his chin a few times but there wasnt any blow up over it and we finished the session on a loving happy note. He did much better with me.
Now if I can keep it up...two times a day for 20 minutes. I know he is tired afterwards.
On the last day of therapy the Marcus Institute sends the therapist to your home to watch you go though a day of feeding and therapy
Then the therapist mentioned having next Friday off...our last day. I asked about the home visit at the RMH...I told her that if she was takng off then there was no need for us to stay another day. That means four days instead of five days left. FOUR DAYS and we are home! If given a way out...I am gone! I am armed with therapies and Artie is swallowing. We are ready to move on with chewing and introducing more foods.
We came, we did it.
Lets see how fast I can pack this weekend.
The protocol is as follows:
I am going to give you your bite and tell you "take your bite, Artie".
When you take your bite I am going to tell you to chew. When you chew 10 times I am going to tell you "good job chewing" and you get the toy to play with. If you do not chew I am going to tell you "You need to chew" and if you still dont I am going to say "chew like this" and show you with this straw. Then I will say "you do it". If you still dont, I am going to hold the chewy in your mouth until you chew and help like this (pressing lightly on his chin} and when you chew, you get the toy.
Now this did not make him happy. So when I got in there I slowly developed "protocol drift"!
We ditched the toy. After the first session I just did not put the toy back on his tray. Taking it was not working. I was thinking they were going to fuss at me any moment. Non compliant mom...tisk tisk!
I loved on him instead. For the first few times he fussed during the 20 seconds after he chewed and I kept taking his face in my hands. We leaned in with our heads touching and I told him what an awesome little guy he is. He calmed and the fussing stopped. Then suddenly during one 20 second break he grinned at me and I knew we could do this. The second set of chewing he watched my face. It was pushed to the point of me demonstrating the chew and he followed through. By the end of the session he was calm and chewing most of the time. When he didnt chew he watched me. I moved his chin a few times but there wasnt any blow up over it and we finished the session on a loving happy note. He did much better with me.
Now if I can keep it up...two times a day for 20 minutes. I know he is tired afterwards.
On the last day of therapy the Marcus Institute sends the therapist to your home to watch you go though a day of feeding and therapy
Then the therapist mentioned having next Friday off...our last day. I asked about the home visit at the RMH...I told her that if she was takng off then there was no need for us to stay another day. That means four days instead of five days left. FOUR DAYS and we are home! If given a way out...I am gone! I am armed with therapies and Artie is swallowing. We are ready to move on with chewing and introducing more foods.
We came, we did it.
Lets see how fast I can pack this weekend.
Thursday, April 23, 2009
What makes a good day?
Through the night Artie was in pain.
As I listen to the thunder, I know there will be pain again tonight. The low barometric pressure causes him pain.
Artie lives with neuromuscular scoliosis which, historically results in a limited life span. As he grows, his lung capacity would decrease due to thoratic insuffiecncy.
I say would. We have hope because we were able to get him to doctors that are treating his scoloisis by using a VEPTR II implant. I posted a picture of his xrays here. It attaches to his ribs and spine, holding his rib cage open.
Artie has DS of course, but that is the least of what we worry about. To look at him, you see a vibrant, smiling child with flashing eyes and a sense of humor. You would never know.
What makes a good day? I keep asking myself that. He had such a fitful night full of pain and pain meds and when we got up today I didnt think we would make it. Therapy was hard at first because I had to speak out. The therapist had pulled on his arms yesterday...resulting in a painful night. They were very gentle with him the rest of the day, but some trust was lost and I was nervous when she walked into the room. By 11am his pain meds had worn off. Poor sweet Artie cried and cried. I cuddled him for nap time and he slept while I held a warm compress to his back.
I was so preoccupied when we got to the RMH.
Then a friend came over to play with him.
Then I heard him laugh and every tense muscle relaxed. He giggled and played with friends in the dining room.
Even though that implant hurts when its cold, wet or he is over taxed...even though he has such respitory issues, even though his immune system is low and he goes through so much, he laughs.
When I hear the full belly laugh then I know it is really a good day. Its worth fighting for!
I hear some talk about quality of life. I know they want to put another VEPTR II in the other side and he will have more pain. I know, I know. I dont know how to stop it. All I know is we are taking it one day at the time. And today was a good day after all.
As I listen to the thunder, I know there will be pain again tonight. The low barometric pressure causes him pain.
Artie lives with neuromuscular scoliosis which, historically results in a limited life span. As he grows, his lung capacity would decrease due to thoratic insuffiecncy.
I say would. We have hope because we were able to get him to doctors that are treating his scoloisis by using a VEPTR II implant. I posted a picture of his xrays here. It attaches to his ribs and spine, holding his rib cage open.
Artie has DS of course, but that is the least of what we worry about. To look at him, you see a vibrant, smiling child with flashing eyes and a sense of humor. You would never know.
What makes a good day? I keep asking myself that. He had such a fitful night full of pain and pain meds and when we got up today I didnt think we would make it. Therapy was hard at first because I had to speak out. The therapist had pulled on his arms yesterday...resulting in a painful night. They were very gentle with him the rest of the day, but some trust was lost and I was nervous when she walked into the room. By 11am his pain meds had worn off. Poor sweet Artie cried and cried. I cuddled him for nap time and he slept while I held a warm compress to his back.
I was so preoccupied when we got to the RMH.
Then a friend came over to play with him.
Then I heard him laugh and every tense muscle relaxed. He giggled and played with friends in the dining room.
Even though that implant hurts when its cold, wet or he is over taxed...even though he has such respitory issues, even though his immune system is low and he goes through so much, he laughs.
When I hear the full belly laugh then I know it is really a good day. Its worth fighting for!
I hear some talk about quality of life. I know they want to put another VEPTR II in the other side and he will have more pain. I know, I know. I dont know how to stop it. All I know is we are taking it one day at the time. And today was a good day after all.
Days fly by...and then there is the bubble mower
We are down to one week. One week left. I will be so happy to get home.
We have met some wonderful people here. Let me tell you how supportive everyone is at the RMH! One family that we have become close to has found a spot in Arties heart.
He looks for them everytime we come down and they have done their best to spoil him!
One day we came in and it was such beautiful weather that we went out to play. I was blowing bubbles for Artie cause he loves loves loves them! The next day we came in and there was Raymond and Kenneth with a bubble mowerfor him! I dont know what inspired them to do this but they could not have gotten him a more beloved gift. I think Artie pushed it til he dropped that day. He had it outside for a while but he kept trying to put it in the car. He would go to the car and try the door and then go to the other side and try the door. I could never figure out why because I am sure he would have had a melt down if the door was shut with it in there. Later he kept wanting to take it on the elevator to the room. The afternoon and evening flew by and it came time to go upstairs for a bath.
He would not let go to get in the bath tub. The mower had to be IN the tub with him for him to cooperate!
After bath we had some things to get done and it had to ride in the stroller with him and when I put my foot down and said no, he resorted to holding on to the handle and pulling it. At one point, every where we went he had to push it in front of the stroller.
Now love is love but this was silly...he wanted it all the time! Even bed time. The second night I figured out that we could use the wagon and it could sit in there with him. He was happy with that. Later I figured out how to mount it on the shower and get him in the bath with out him having to share the bathtub with the mower! By the third day I hid it under the desk...the boy eats, sleeps and dreams of this mower! I said I think this is fine training for mowing the lawn when he grows up...but somehow I never dreamed it would become attached to him!
You should see how we have to get out of the room in the mornings...so he doesnt see the mower!
We have met some wonderful people here. Let me tell you how supportive everyone is at the RMH! One family that we have become close to has found a spot in Arties heart.
He looks for them everytime we come down and they have done their best to spoil him!
One day we came in and it was such beautiful weather that we went out to play. I was blowing bubbles for Artie cause he loves loves loves them! The next day we came in and there was Raymond and Kenneth with a bubble mowerfor him! I dont know what inspired them to do this but they could not have gotten him a more beloved gift. I think Artie pushed it til he dropped that day. He had it outside for a while but he kept trying to put it in the car. He would go to the car and try the door and then go to the other side and try the door. I could never figure out why because I am sure he would have had a melt down if the door was shut with it in there. Later he kept wanting to take it on the elevator to the room. The afternoon and evening flew by and it came time to go upstairs for a bath.
He would not let go to get in the bath tub. The mower had to be IN the tub with him for him to cooperate!
After bath we had some things to get done and it had to ride in the stroller with him and when I put my foot down and said no, he resorted to holding on to the handle and pulling it. At one point, every where we went he had to push it in front of the stroller.
Now love is love but this was silly...he wanted it all the time! Even bed time. The second night I figured out that we could use the wagon and it could sit in there with him. He was happy with that. Later I figured out how to mount it on the shower and get him in the bath with out him having to share the bathtub with the mower! By the third day I hid it under the desk...the boy eats, sleeps and dreams of this mower! I said I think this is fine training for mowing the lawn when he grows up...but somehow I never dreamed it would become attached to him!
You should see how we have to get out of the room in the mornings...so he doesnt see the mower!
Tuesday, April 21, 2009
A kiss...
I had to wake him from his nap. He had to wake up and eat so the session could be about chewing and not focused on eating. I was holding him and there was so much going on around us that I cuddled him and turned away from the noise.
As I was looking over my shoulder, he lifted his head and took my face in both of his hands and kissed me on the lips. Then he buried his face in my neck.
Did I tell you that I love this child? He has such love in him. He is caring and gentle and he is responsive to kindness.
As I was looking over my shoulder, he lifted his head and took my face in both of his hands and kissed me on the lips. Then he buried his face in my neck.
Did I tell you that I love this child? He has such love in him. He is caring and gentle and he is responsive to kindness.
Monday, April 20, 2009
Chewing is a tiring process
I never thought about chewing. I just eat. Lil man gets so tired. I can tell because afterwards he is so quiet.
He started learning to chew by them taking a tube, such as we use for the oxygen or the nebulizer, and cutting a strip out of it. He was then required to chew down on it for 5 sets for each side, two reps each. As he demonstrated he could do it the reps increased. He is up to 10 reps. Once his chews become strong then they add food on the tube working their way up to food that requires chewing. Then the next goal is self feeding. We may get to touch on that if he responds to the therapy.
He has done well mind you...and today they felt he was not "focused" enough.
They felt he was distracted with play and took his toy away. It was given back for 30 seconds when he complied and he chewed as they asked. At first I thought this would create strife and a negitive response. My little hero, already bored with the toys after 6 weeks anyway, made a game of it. And when he did get the toy he threw it across the room so the therapist couldnt take it again...Smart boy!
All complaining aside, they are an awesome bunch here...great feeding team!
One of the therapist told me that is does not come natural. Chewing is something learned in development. Hummm. Does that make sense?
We are so delighted to hear that some friends have good news! Baby D is going to step down! Wow! that means going home soon and we all know what a deep breath we take when that comes.
We have 7 more days in therapy. Seven.
We will be glad to be home, even if it means having to gear up for more. I miss my friends and family.
He started learning to chew by them taking a tube, such as we use for the oxygen or the nebulizer, and cutting a strip out of it. He was then required to chew down on it for 5 sets for each side, two reps each. As he demonstrated he could do it the reps increased. He is up to 10 reps. Once his chews become strong then they add food on the tube working their way up to food that requires chewing. Then the next goal is self feeding. We may get to touch on that if he responds to the therapy.
He has done well mind you...and today they felt he was not "focused" enough.
They felt he was distracted with play and took his toy away. It was given back for 30 seconds when he complied and he chewed as they asked. At first I thought this would create strife and a negitive response. My little hero, already bored with the toys after 6 weeks anyway, made a game of it. And when he did get the toy he threw it across the room so the therapist couldnt take it again...Smart boy!
All complaining aside, they are an awesome bunch here...great feeding team!
One of the therapist told me that is does not come natural. Chewing is something learned in development. Hummm. Does that make sense?
We are so delighted to hear that some friends have good news! Baby D is going to step down! Wow! that means going home soon and we all know what a deep breath we take when that comes.
We have 7 more days in therapy. Seven.
We will be glad to be home, even if it means having to gear up for more. I miss my friends and family.
Saturday, April 18, 2009
Time is winding down...
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.
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.
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
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