Today I took Jordan to meet the pediatric surgeon, Dr. Neil Uitvlugt. We discussed Jordan getting a G-tube and having a Nissen fundoplication. The tube will allow us to feed her without concern of safety or nutrition - we can give her the desired amount of nutrition in a safe manner. The Nissen procedure will block Jordan from refluxing and causing discomfort with the risk of aspiration. After over an hour of discussing Jordan's story and hearing about the procedure, Dr. Neil decided that Jordan was a candidate for the surgery. He felt that although she currently seems to be doing better with quantity and since she doesn't sound too bad at this point, it might not be necessary. However, if we don't move forward with it, but wait 6 months to see how she does, she might again have difficulties and then we are 6 month behind in providing her safe nutrition to help her with her physical and brain development that is so vital in these early years. If we have the procedure done, and she continues to get a portion of her nutrition by tube and a portion orally, we may be able to work through the swallowing difficulties more quickly without concern of nutrition levels.
Jordan is scheduled for surgery on August 21st. She will be in the DeVos Children's Hospital for about 3 days following the procedure. Please be praying for Jordan, our family, the Dr. and all other medical personnel that will be involved. Thank you!!
Wednesday, July 30, 2008
Tuesday's MFB Therapy
Yesterday at Jordan's therapy she weighed in at 15 lbs 15 oz. That is her biggest gain since starting therapy!! She has gained 2 lbs since she was 9 months old (in 4 1/2 months). Basically, I explained to Ellen that she has done very well with the spoon feeding of the honey/pudding thick Pediasure and we only used the bottle at times when spoon feeding wasn't available. Since her quantity was up to 30-35 oz per day and she didn't sound too bad, they were very excited!
We discussed that since things were going well and she was getting the quantity desired by Burdo-Hartman's office, we would stick with what is working. Ellen is afraid to change anything at this point, since it is going so well and she never knows what to expect from Jordan.
We discussed that since things were going well and she was getting the quantity desired by Burdo-Hartman's office, we would stick with what is working. Ellen is afraid to change anything at this point, since it is going so well and she never knows what to expect from Jordan.
CRAWLING!!!
On Monday night as Derrick was walking in the door from work, Jordan started to crawl. She only took a few crawls a couple of different times throughout the night, but it was very exciting for us to see her figure out such a difficult cordination task. Now only 2 days later, she is figuring it out and proving to be very effective at getting herself into everything. Along with finding every little piece of paper, grass or dog hair, she even found her little wastbasket with her dirty diapers in it (I suppose it's time to invest in an actual diaper pail...)
One thing we have noticed is that she doesn't use her legs equally. She favors one and one stays tucked under her when she crawls. She also has a hard time keeping her hips in and so she looks like a little frog moving across the floor.
If I can figure out how to load video, I will post some soon!
One thing we have noticed is that she doesn't use her legs equally. She favors one and one stays tucked under her when she crawls. She also has a hard time keeping her hips in and so she looks like a little frog moving across the floor.
If I can figure out how to load video, I will post some soon!
Tuesday, July 29, 2008
Family Vacation and Therapy Last Week!
Last week our family was camping up north at Orchard Beach State Park in Manistee. We visited family and friends in Traverse City, Lake Ann, Suttons Bay and at Portage Lake Covenant Bible Camp in Onekama. It was a busy week full of lots of fun! Feeding Jordan was difficult at times, but because of our new Fisher Price Space-Saver Highchair we were able to bring it along and feed her wherever we were.
I actually drove back to Grand Rapids for Jordan's therapy on Tuesday and Ellen made a few changes to our feeding program. I told Ellen and Jane that Jordan has been refusing her bottle more and more and they decided that we need to stop using it as a feeding tool as much as possible. We are back to almost completely spoon feeding. I was supposed to start with the Pediasure (honey/pudding thickness) and spoon feed until she is tiring and then try a bottle until her first refusal and then switch to spoon feeding Pediasure (honey thickness). Yes, it's a lot of work, but the theory is that if she tires of the thicker Pediasure, we might be able to get a little more in by spoon if it's a little thinner.
What we found throughout the week is that Jordan loves to eat by spoon!! She almost never tired of the Pediasure (h/p) and we only occasionally had to go to the bottle and almost never the honey thickness. In fact, we found that Jordan would eat more than we felt was appropriate for her tiny little body and had to start cutting her off at mealtimes. I actually fed her 9 oz of Pediasure (h/p) in one feeding while sitting on the beach! Derrick and I decided that she might not know when to stop eating so we decided to limit her to 6 or 7 oz per feeding. We used the bottle only at times when I was unable to feed her by spoon or if it was extremely late and I needed to get her fed and in bed (spoon feeding is a 30 minute process). Overall, she was taking between 30-35 oz of Pediasure throughout the day!! That finally meets the nutritional needs designated by the Dr.!!
I actually drove back to Grand Rapids for Jordan's therapy on Tuesday and Ellen made a few changes to our feeding program. I told Ellen and Jane that Jordan has been refusing her bottle more and more and they decided that we need to stop using it as a feeding tool as much as possible. We are back to almost completely spoon feeding. I was supposed to start with the Pediasure (honey/pudding thickness) and spoon feed until she is tiring and then try a bottle until her first refusal and then switch to spoon feeding Pediasure (honey thickness). Yes, it's a lot of work, but the theory is that if she tires of the thicker Pediasure, we might be able to get a little more in by spoon if it's a little thinner.
What we found throughout the week is that Jordan loves to eat by spoon!! She almost never tired of the Pediasure (h/p) and we only occasionally had to go to the bottle and almost never the honey thickness. In fact, we found that Jordan would eat more than we felt was appropriate for her tiny little body and had to start cutting her off at mealtimes. I actually fed her 9 oz of Pediasure (h/p) in one feeding while sitting on the beach! Derrick and I decided that she might not know when to stop eating so we decided to limit her to 6 or 7 oz per feeding. We used the bottle only at times when I was unable to feed her by spoon or if it was extremely late and I needed to get her fed and in bed (spoon feeding is a 30 minute process). Overall, she was taking between 30-35 oz of Pediasure throughout the day!! That finally meets the nutritional needs designated by the Dr.!!
Thursday, July 17, 2008
Not Doing So Well ... Again...
Well after 2 weeks of Jordan sounding very clear and thinking that she was getting better at swallowing, Jordan is now back to sounding VERY wet and gurgly. We first noticed on Friday and by Saturday she was extremely congested. In fact, my brother was in town and was holding her and wondered if she had a bad cold because of the rattle in her chest. We never changed anything other than to increase her Zantac which should clear up any reflux she may still be having. We are baffled why she all of a sudden took a turn for the worse.
At therapy on Tuesday, Ellen was very concerned at how wet she was and the fact that she wouldn't cough. We slowly tried to feed her Pediasure thickened to nectar, honey, and honey/nectar consistency to see if it made a difference, but it didn't seem to change anything. We also tried juice at nectar and honey/pudding consistency, but again, no change. Finally after about 1/2 hr of feeding her she had quite a few hard coughs and cleared it all out. Nurse Jane was amazed at what a difference the cough made. This tells us that it isn't deep in her lungs but most likely in her airway and throat and maybe a little bit in her upper lungs. This is probably why she isn't getting sick very often.
By the end of therapy, Ellen sat and just looked at Jordan for several minutes trying to figure out what to do with her. She said she wished she could feed her in front of an x-ray machine every week because she's a different patient every week and she just never knows what is going on inside when we are feeding her. This week we are trying feeding her 2-3 oz of honey thickened Pediasure by spoon with intermittent honey thickened juice. Then giving her a bottle with honey/pudding thickened Pediasure to fill her up. Ellen said that Dr. Burdo-Hartman said that Jordan needs to fail at therapy before she will approve the G-tube and that it looks like that might be what we are facing at this point.
Please keep little Jordan in your prayers - we need her to continue to take a good quantity of food but we need to get it in her safely. Also please pray that she doesn't get sick - because she isn't coughing as often, she is more at risk for aspirating not only when eating, but just from normal breathing because of all the gunk in her airway.
At therapy on Tuesday, Ellen was very concerned at how wet she was and the fact that she wouldn't cough. We slowly tried to feed her Pediasure thickened to nectar, honey, and honey/nectar consistency to see if it made a difference, but it didn't seem to change anything. We also tried juice at nectar and honey/pudding consistency, but again, no change. Finally after about 1/2 hr of feeding her she had quite a few hard coughs and cleared it all out. Nurse Jane was amazed at what a difference the cough made. This tells us that it isn't deep in her lungs but most likely in her airway and throat and maybe a little bit in her upper lungs. This is probably why she isn't getting sick very often.
By the end of therapy, Ellen sat and just looked at Jordan for several minutes trying to figure out what to do with her. She said she wished she could feed her in front of an x-ray machine every week because she's a different patient every week and she just never knows what is going on inside when we are feeding her. This week we are trying feeding her 2-3 oz of honey thickened Pediasure by spoon with intermittent honey thickened juice. Then giving her a bottle with honey/pudding thickened Pediasure to fill her up. Ellen said that Dr. Burdo-Hartman said that Jordan needs to fail at therapy before she will approve the G-tube and that it looks like that might be what we are facing at this point.
Please keep little Jordan in your prayers - we need her to continue to take a good quantity of food but we need to get it in her safely. Also please pray that she doesn't get sick - because she isn't coughing as often, she is more at risk for aspirating not only when eating, but just from normal breathing because of all the gunk in her airway.
Friday, July 11, 2008
Jordan's Upcoming Appt. with the Surgeon
Jordan is scheduled to meet with Dr. Neil Uitvlugt, a pediatric surgeon on Wednesday, July 30th. With Dr. Burdo-Hartman's recommendation, we will discuss with him Jordan's need for a gastric feeding tube (G-tube). This will enable us to provide her adequate nutrition without worrying about getting it into her safely. At that point, we will be able to work more on her therapy and teaching her how to swallow properly.
This Week's Therapy
This week at feeding therapy, Jordan was still sounding pretty good so Ellen thought she would try to mix things up a bit. She took some applesauce and put it through the blender to make it really smooth and then added Simply Thick to make it the consistency Jordan's food is normally made. After only 2 bites, she was sounding quite wet and gurgly. We gave her some more thickened Pediasure and tried a few more bites of applesauce, but again she didn't sound too good. Ellen decided that it wasn't a good idea to introduce any new foods into her diet at this time. Jordan will continue on thickened Pediasure and some thickened juices (any clear 100% juice).
Just to try another idea, Ellen had me feed Jordan 3 Tablespoons by spoon (instead of 2) and then try the bottle. When I tried it at therapy, Jordan had also had some juice and applesauce and by the time she got to the bottle, she only took between 1/2 to 1 oz. Since then I have continued to try at home and have had some luck, although her total intake amounts don't seem to change. If I give her an additional ounce by spoon, she normally takes 1 less ounce by bottle. I guess it's just a matter of figuring out if the spoon or bottle is a safer way to provide her nutrition.
Just to try another idea, Ellen had me feed Jordan 3 Tablespoons by spoon (instead of 2) and then try the bottle. When I tried it at therapy, Jordan had also had some juice and applesauce and by the time she got to the bottle, she only took between 1/2 to 1 oz. Since then I have continued to try at home and have had some luck, although her total intake amounts don't seem to change. If I give her an additional ounce by spoon, she normally takes 1 less ounce by bottle. I guess it's just a matter of figuring out if the spoon or bottle is a safer way to provide her nutrition.
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