This morning I took Jordan in to Mary Free Bed for a videofluroscopy (video swallow study) and Oral Motor Evaluation. I met Rose and we talked briefly about Jordan's history and her current oral experiences. Since she doesn't eat anything by mouth her only exposure is through toys, pacifiers, and anything she picks up off the ground and puts in her mouth!! I explained that they had recommended that we allow her to pleasure feed for 2-3 bites for 3 meals a day of honey/pudding thick Pediasure but she cried when we took the food away so I stopped doing that after only a few days for fear of creating a food aversion.
We then went and began the videofluroscopy. We started with a couple of bites of honey/pudding thick Pediasure. the first few bites went okay but on her 4th bite she aspirated quite a bit. We moved on to pudding thick chocolate pudding (which is actually thicker than pudding normally comes) and after a few bites of doing okay, she again aspirated. The radiologist cut off the swallow study at that point and we went into a room to discuss it.
Rose explained that she does not feel that Jordan is ready for oral foods. She has a tendency to let food slip down her throat rather than gather it at the back of her tongue and swallow. She does swallow okay (not good, just okay) but sometimes there is some slight nasal aspiration (it goes up into her nasal passages) and it often doesn't go down completely in one swallow. The most difficult problem we are facing at this time is the fact that the food is not going completely into her stomach. It goes most of the way down and then kinda creaps up. This is not considered reflux because it never makes it to her stomach.
The concerns at this point are that she doesn't seem to be affected by food sitting at the back of her throat, aspirating food without coughing or any attempt to clear it from her lungs, and food not going completely to her stomach when she swallows. The first 2 are controlled by voluntarily means - she needs to learn to hold the food in her mouth before swallowing and to cough if it gets into her esophogus. However, once you swallow food, it is involuntary muscles that control it's passage into your stomach. Rose is concerned that Jordan has some neurological problems causing her to not know to move that food the rest of the way down to her stomach. These difficulties may never be resolved through therapy. Rose felt confident that Jordan would eat at some point but feels that it might be a while.
She recommended that we pursue a "boot camp" of speech and oral motor therapy that does not include feeding to try to make her more aware of and develop her oral skills. She is recommending 8 weeks of therapy 2 times a week. After that we will have several months of continuing that therapy at home and they will re-evaluate her at that time with another swallow study.
I hadn't really prepared myself for this result. I kinda expected to go in and see that she still has some difficulty swallowing and move into therapy to work on teaching her to swallow properly. I am working on processing it all and coming to an understanding of how severe Jordan's situation is. I am once again relying on God to provide me the strength to keep pressing on. I love this little girl with all my heart and I know that she is soooo strong. She makes me stronger every day by the things she teaches me. I am amazed at how much I still have to learn!
Thursday, January 15, 2009
Monday, January 12, 2009
It's Been a While...
It's been quite a while since I've posted anything here. I guess no news is good news. But in reality, it has been the craziness of our lives that has kept me from keeping everyone up to date on Jordan.
Jordan has been doing great and we love to see her adorable personality shine through in everything she does. Temper tantrums are occasionally entering into our world when Conner takes something away from her or plays with something that she wants to play with. The best sound in the world is the laughter that Conner can create in that little girl just by climbing in the portacrib with her!!
We have had the normal ear infections, colds and flu run through our house over the past couple months and so far, everyone except me has been sick at one point or another (thank you Airborne!!!) It was interesting to experience what happens when Jordan has the stomach flu with her feeding tube. I was able to experience what "wretching and gagging" was like and how to relieve the stomach when she is unable to throw up (due the the Nissen Fundoplication.)
The most exciting event happened on December 2nd. After lunch, I was cleaning up the kitchen and I saw Jordan was under the kitchen table with something in her mouth. I went to go see what it was, figuring Conner dropped some of his lunch and she was giving it a try. To my surprise, I found a nail in her mouth!!! I tried to get it out but the angle was bad so I laid her on her back and attempted to sweep her mouth to remove it. To my complete amazement, it completely disappeared!!! I looked in her mouth and it was gone!! I moved her and it wasn't on the floor under her!! I couldn't believe that my daughter that can't swallow, just swallowed a nail!!! The crazy part was that she acted completely normal...as though nothing had just happened!!!
Needless to say, after talking to the Dr. and getting a babysitter to our house for Conner, I headed to the ER. After checking her out and taking a few x-rays, they found the nail. It had passed through her Nissen without incident and was through her stomach at the beginning of her small intestine. They sent us home and we waited for it to pass. A few days later a follow-up x-ray showed that the nail was gone! Jordan had swallowed a nail and it passed without incident!! We were thrilled, but it has made us a little more cautious about what she might find around the house to put in her mouth. What we find most often is that she puts EVERYTHING in her mouth but NEVER swallows anything (unless mom forces it down her throat by sweeping her mouth!!! - I'm a little more careful about that now!)
Other than that, we had a wonderful Christmas! Jordan started walking while pushing a toy in early December and so we bought her a stroller walker with a doll and she loves to push it around the house!! She also learned to roll over from her back to her stomach! This is a milestone that has made feeding her on the floor more difficult. We normally have her strapped in her highchair now so she doesn't have any escape options! More and more we see the business of Conner in that little girl!
In just a few days, Jordan will be going back to Mary Free Bed for an oral motor evaluation and videofluroscopy. I am soooo excited to see if she is able to swallow. We will hopefully be starting oral feeding soon and getting her back into feeding therapy. Please pray that this evaluation goes well and that we are able to begin therapy with the same therapist that treated her last summer.
The biggest concern at this point is a lack of weight gain. Jordan was doing great for several months following her surgery and was up to 18 lbs 9 oz as of her appt on 10/30. I took her in last week and her weight was again 18lbs 9 oz. That's 2 months with no weight gain. In November, we transitioned her from 6-125 ml feedings to 5-150 ml feedings so we were no longer feeding her while she slept. However, 2 bouts with the flu and an ear infection have caused her to sleep much more and there were many days I was only able to fit 4 feedings in. I am feeling somewhat guilty for these missed feedings now that I see how significantly they affected her weight gain. Please pray that I am able to work 5 feedings in every day and that she begins to gain weight again.
Jordan has been doing great and we love to see her adorable personality shine through in everything she does. Temper tantrums are occasionally entering into our world when Conner takes something away from her or plays with something that she wants to play with. The best sound in the world is the laughter that Conner can create in that little girl just by climbing in the portacrib with her!!
We have had the normal ear infections, colds and flu run through our house over the past couple months and so far, everyone except me has been sick at one point or another (thank you Airborne!!!) It was interesting to experience what happens when Jordan has the stomach flu with her feeding tube. I was able to experience what "wretching and gagging" was like and how to relieve the stomach when she is unable to throw up (due the the Nissen Fundoplication.)
The most exciting event happened on December 2nd. After lunch, I was cleaning up the kitchen and I saw Jordan was under the kitchen table with something in her mouth. I went to go see what it was, figuring Conner dropped some of his lunch and she was giving it a try. To my surprise, I found a nail in her mouth!!! I tried to get it out but the angle was bad so I laid her on her back and attempted to sweep her mouth to remove it. To my complete amazement, it completely disappeared!!! I looked in her mouth and it was gone!! I moved her and it wasn't on the floor under her!! I couldn't believe that my daughter that can't swallow, just swallowed a nail!!! The crazy part was that she acted completely normal...as though nothing had just happened!!!
Needless to say, after talking to the Dr. and getting a babysitter to our house for Conner, I headed to the ER. After checking her out and taking a few x-rays, they found the nail. It had passed through her Nissen without incident and was through her stomach at the beginning of her small intestine. They sent us home and we waited for it to pass. A few days later a follow-up x-ray showed that the nail was gone! Jordan had swallowed a nail and it passed without incident!! We were thrilled, but it has made us a little more cautious about what she might find around the house to put in her mouth. What we find most often is that she puts EVERYTHING in her mouth but NEVER swallows anything (unless mom forces it down her throat by sweeping her mouth!!! - I'm a little more careful about that now!)
Other than that, we had a wonderful Christmas! Jordan started walking while pushing a toy in early December and so we bought her a stroller walker with a doll and she loves to push it around the house!! She also learned to roll over from her back to her stomach! This is a milestone that has made feeding her on the floor more difficult. We normally have her strapped in her highchair now so she doesn't have any escape options! More and more we see the business of Conner in that little girl!
In just a few days, Jordan will be going back to Mary Free Bed for an oral motor evaluation and videofluroscopy. I am soooo excited to see if she is able to swallow. We will hopefully be starting oral feeding soon and getting her back into feeding therapy. Please pray that this evaluation goes well and that we are able to begin therapy with the same therapist that treated her last summer.
The biggest concern at this point is a lack of weight gain. Jordan was doing great for several months following her surgery and was up to 18 lbs 9 oz as of her appt on 10/30. I took her in last week and her weight was again 18lbs 9 oz. That's 2 months with no weight gain. In November, we transitioned her from 6-125 ml feedings to 5-150 ml feedings so we were no longer feeding her while she slept. However, 2 bouts with the flu and an ear infection have caused her to sleep much more and there were many days I was only able to fit 4 feedings in. I am feeling somewhat guilty for these missed feedings now that I see how significantly they affected her weight gain. Please pray that I am able to work 5 feedings in every day and that she begins to gain weight again.
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