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.
Tuesday, July 8, 2008
The Dr. Finally Calls!!
After waiting 5 days to hear from Dr. Burdo-Hartman, she finally called today! She essentially described Jordan as having dysphasia (swallowing problems), small size, reflux, low muscle tone, developmental delays, and some other markers (ie: ear tags, simian crease, etc). She said that the next step she wants to take is to have Jordan meet with Genetics - Dr. Toriello is the geneticist in Grand Rapids. She wants to see if there is something underlying that explains things to see if we should approach her in a different manner. She will order chromosomal studies and other metabolic screenings. I will have to collect her urine and take it to the lab where she will have some blood drawn. She said that this is level 1 and we will see if anything comes up and see where we go from there. If there is an chromosomal abnormality, that will help us determine what road we want to go down - it helps to have a name because it will help us know what she may have issues with in the future.
She also wants to increase the dosing of her Zantac since she is currently on a low dose to get her up to a medium dose to relieve any discomfort she may still be having.
She said that Jordan is currently in the gray zone for feeding because she has recently decided to step things up, but for a long time has not been eating. She wants Jordan to see the surgeon to discuss a G-tube because this current method of feeding her is not a long-term solution, but if it is a stepping stone to improving her feeding, we may not need to go through with it. She wants us to stick with what we're doing right now while we work it through. She said it sometimes takes a few weeks to get in to see the surgeon and then a few weeks to get in to the hospital for the surgery.
Please pray for Jordan as she may be having surgery at some point and also for us as we prepare to learn of any chromosomal abnormalities and/or metabolic disorders.
She also wants to increase the dosing of her Zantac since she is currently on a low dose to get her up to a medium dose to relieve any discomfort she may still be having.
She said that Jordan is currently in the gray zone for feeding because she has recently decided to step things up, but for a long time has not been eating. She wants Jordan to see the surgeon to discuss a G-tube because this current method of feeding her is not a long-term solution, but if it is a stepping stone to improving her feeding, we may not need to go through with it. She wants us to stick with what we're doing right now while we work it through. She said it sometimes takes a few weeks to get in to see the surgeon and then a few weeks to get in to the hospital for the surgery.
Please pray for Jordan as she may be having surgery at some point and also for us as we prepare to learn of any chromosomal abnormalities and/or metabolic disorders.
Friday, July 4, 2008
Thursday's BIG Dr. Appointment
We survived Jordan's BIG evaluation at the Helen DeVos Children's Hospital Gerber Center for Infant Development and Nutrition. Jordan weighed in at 15lb 2 oz and was 26 1/4 in long. When she was charted - she was still significantly below the 3rd percentile. We had to wait a little while before we were seen because the social worker was on vacation and the dietitian had flooding and power problems at home from the storm the night before. 
We finally sat down with Dr. Mastin the psychologist and discussed with her what we were most concerned with and what we would like to see accomplished through this program. She asked lots of questions and answered some of ours as well. During this conversation, Jessica, the occupational therapist came in and we fed Jordan so that she could see what is going on with her. Jordan has been doing very well the past few days and so there wasn't much wet and gurgleyness with her eating but the fact that she is only able to eat honey/pudding-thick Pediasure by both spoon and bottle as well as the reports from Ellen hopefully gave her an idea of what we have been going through with her. 
They left and Jordan was finishing her bottle when Dr. Burdo-Hartman came in and began her evaluation. She is a pediatric neurodevelopment specialist and talked with us about some things and then played with Jordan and checked her out some of her physical characteristics and development. 
After her evaluation, she said that they would all sit down together and discuss Jordan and we would receive a phone call from her that night with their findings. Unfortunately, she never called... I was kinda hoping to hear from her this morning but due to the 4th of July holiday, I will probably have to wait until Monday to get any information. 
Wednesday, July 2, 2008
Update
On Tuesday I received a call from Dr. Koetsier, Jordan's pediatrician. He had the report of the MRI and said that it basically stated that there was mildly diminished white matter and that it was indicative of cerebral palsy. This confirms what Dr. VanDyke said several weeks ago. We hope to get more details on this report at her appointment tomorrow.
At today's MFB therpay, Jordan had gained weight and grown in length - she was 15lb 2 oz and 26 3/4 in. That put her at about 3% for length but still significantly below the chart for weight. Jordan has been doing very well with quantity and has been doing okay with safety - she has taken between 18-27 oz of thickened Pediasure per day for the past week. We are using a very unusual method of feeding - Ellen said that she has never had to do this and that hopefully we will be able to work something out so that I don't have so much work invested in feeding her - it takes about 1/2 hr 6 times a day (not at our meal times). We start with 2 oz thickened Pediasure and 1 oz of thickened apple juice by spoon - 2 to 3 spoons of P and then a spoon of AJ to clear her out - also anytime she sounds like she is getting wet and gurgly. Then we move to a bottle with thickened Pediasure - she usually takes from 2-4 oz. This gives Jordan the ability to eat from 2 separate methods before fatiguing with each.
Tomorrow is Jordan's BIG appointment with Dr. Burdo-Hartman. Our appointment is at 1:15 and she will be there for 2 to 3 hours. Derrick has the afternoon off so he can be with us for this evaluation. Dr. B-H is a neurodevelopmental specialist - she will also be evaluated by a behavioral psychologist, occupational therapist, speech therapist, dietitian, and nurse practitioner. This multidisciplinary approach will allow them to together come up with a overall diagnosis and treatment plan that should cover all areas of Jordan's development. My biggest concern of this appointment is that Jordan normally takes a nap around 2pm. I will try to get her to take a late, long morning nap before heading to the appointment so she's able to make it through the appt.
Please pray for Jordan for this appointment as it is a very important step in determining what is going on with her and what we need to do to help her. Please pray also for Derrick and me, that we are able to understand and retain the information that we are given. And finally, pray for my parents as they have Mak and Conner today and tomorrow to help us to not have to worry about them during this important time.
At today's MFB therpay, Jordan had gained weight and grown in length - she was 15lb 2 oz and 26 3/4 in. That put her at about 3% for length but still significantly below the chart for weight. Jordan has been doing very well with quantity and has been doing okay with safety - she has taken between 18-27 oz of thickened Pediasure per day for the past week. We are using a very unusual method of feeding - Ellen said that she has never had to do this and that hopefully we will be able to work something out so that I don't have so much work invested in feeding her - it takes about 1/2 hr 6 times a day (not at our meal times). We start with 2 oz thickened Pediasure and 1 oz of thickened apple juice by spoon - 2 to 3 spoons of P and then a spoon of AJ to clear her out - also anytime she sounds like she is getting wet and gurgly. Then we move to a bottle with thickened Pediasure - she usually takes from 2-4 oz. This gives Jordan the ability to eat from 2 separate methods before fatiguing with each.
Tomorrow is Jordan's BIG appointment with Dr. Burdo-Hartman. Our appointment is at 1:15 and she will be there for 2 to 3 hours. Derrick has the afternoon off so he can be with us for this evaluation. Dr. B-H is a neurodevelopmental specialist - she will also be evaluated by a behavioral psychologist, occupational therapist, speech therapist, dietitian, and nurse practitioner. This multidisciplinary approach will allow them to together come up with a overall diagnosis and treatment plan that should cover all areas of Jordan's development. My biggest concern of this appointment is that Jordan normally takes a nap around 2pm. I will try to get her to take a late, long morning nap before heading to the appointment so she's able to make it through the appt.
Please pray for Jordan for this appointment as it is a very important step in determining what is going on with her and what we need to do to help her. Please pray also for Derrick and me, that we are able to understand and retain the information that we are given. And finally, pray for my parents as they have Mak and Conner today and tomorrow to help us to not have to worry about them during this important time.
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