Today has been a very good day for Jordan's drinking. Throughout the day she had 5 bottles of 4 oz of Pediasure thickened with yogurt, pudding, and cereal to make it pudding consistency. All but 1 of those bottles she finished in about 5 minutes by using the technique of giving her 1 sip at a time! The one she didn't finish was right before lunch so I thickened it with some barley cereal and spoon fed her the rest of it. That's 20 oz of thickened Pediasure full of nutrition for my baby girl!!
I am now hoping for a good night's sleep without worrying about Jordan so much!!!
...of course, we need to figure out how to keep Conner asleep all night because I spent 1 1/2 hours last night trying to get him to stay in bed between 2-3:30 am!!! Funny thing is that I heard his little footsteps but thought he went back to bed until Derrick found him on the living room couch this morning!! This happened a few nights ago also so it seems to be a new trend...
Wednesday, June 11, 2008
Tuesday, June 10, 2008
MFB Therapy
I was very unsure of what today's therapy would bring since Jordan has gotten such a low amount of fluids for the past several days (less than 10oz per day). Surprisingly she actually gained a little weight - she was up to 14lb 8 oz. There was quite a bit of concern with the possibility of dehydration and lack of nutrition.
Ellen tried a new (but actually old) sippy cup with honey thick Pediasure. Jordan sounded very wet and gurgley. She thickened it to a pudding consistency and she did okay with it when given just a sip at a time.
We then worked on a bottle. Ellen used a Dr. Brown's bottle with a Y-cut nipple and pudding thick Pediasure. Again, we only let Jordan take one sip at a time. She actually did quite well with it and didn't sound too wet. After she started refusing the bottle we tried spoon feeding her and she took a few spoonfuls before she didn't want anymore. Over a period of about 30 minutes she took almost 3 oz!
The nutritionist and dietitian agreed that Jordan needs to stick to a diet of Pediasure thickened to the appropriate consistency with pudding, yogurt, and cereal. I will drop her fruit and veggie purees for now so that we ensure she is getting the most possible nutrition, calories, and liquids in as little amount of food as possible.
They feel that Jordan has started on a downward spiral - she is getting less nutrition and her energy level is weakening and so she has less energy to put towards eating, thus giving her less nutrition. Her therapy has now been increased to 2x/wk and they will monitor her closely. They want to get her in to see the specialist before July 3, but she is out of town for 2 weeks. If necessary, they may have her see a different specialist in the same program at DeVos Children's Hospital.
As I was leaving today I asked Ellen about the feeding tube and she said she was pretty confident Jordan would need one to get her the nutrition she needs. Currently her therapy consists of finding the safest way to get her as much nutrition as possible and they can't even work with her on building the skills she needs to learn.
The past few days have been quite stressful and somewhat overwhelming for me. I am constantly concerned about what Jordan is consuming and how much and often she has wet diapers. I know that Jordan is being monitored weekly but a day seems like forever when she's not drinking and not peeing! Please pray that Jordan receives the nutrition she needs to stay healthy and for my stress level through all of this. I don't feel like I can keep up with all of the day-to-day work of being a wife and mom to 3 kids. Also pray for Mak and Conner in all of this - I don't want them to feel unimportant because of all we are doing for and with Jordan.
Thank you all for supporting us through this journey!
Ellen tried a new (but actually old) sippy cup with honey thick Pediasure. Jordan sounded very wet and gurgley. She thickened it to a pudding consistency and she did okay with it when given just a sip at a time.
We then worked on a bottle. Ellen used a Dr. Brown's bottle with a Y-cut nipple and pudding thick Pediasure. Again, we only let Jordan take one sip at a time. She actually did quite well with it and didn't sound too wet. After she started refusing the bottle we tried spoon feeding her and she took a few spoonfuls before she didn't want anymore. Over a period of about 30 minutes she took almost 3 oz!
The nutritionist and dietitian agreed that Jordan needs to stick to a diet of Pediasure thickened to the appropriate consistency with pudding, yogurt, and cereal. I will drop her fruit and veggie purees for now so that we ensure she is getting the most possible nutrition, calories, and liquids in as little amount of food as possible.
They feel that Jordan has started on a downward spiral - she is getting less nutrition and her energy level is weakening and so she has less energy to put towards eating, thus giving her less nutrition. Her therapy has now been increased to 2x/wk and they will monitor her closely. They want to get her in to see the specialist before July 3, but she is out of town for 2 weeks. If necessary, they may have her see a different specialist in the same program at DeVos Children's Hospital.
As I was leaving today I asked Ellen about the feeding tube and she said she was pretty confident Jordan would need one to get her the nutrition she needs. Currently her therapy consists of finding the safest way to get her as much nutrition as possible and they can't even work with her on building the skills she needs to learn.
The past few days have been quite stressful and somewhat overwhelming for me. I am constantly concerned about what Jordan is consuming and how much and often she has wet diapers. I know that Jordan is being monitored weekly but a day seems like forever when she's not drinking and not peeing! Please pray that Jordan receives the nutrition she needs to stay healthy and for my stress level through all of this. I don't feel like I can keep up with all of the day-to-day work of being a wife and mom to 3 kids. Also pray for Mak and Conner in all of this - I don't want them to feel unimportant because of all we are doing for and with Jordan.
Thank you all for supporting us through this journey!
Monday, June 9, 2008
Feeding Time
Well, over the past several days, I have been working on feeding Jordan according to the therapist's instructions. It's a lot of work!! I have used 2 separate containers to mix approx. 8 oz of her Pediasure with various thickeners (pudding, rice cereal, applesauce, yogurt) and then label them for the day. I was mixing it for each meal, but saw that my friend Tara Ronning had a great idea for Elliot's formula and realized it would be easier to make a bunch and pour it into the bottle/cup for each feeding. I have also thickened her stage 2 purees to approx. a pudding thickness if they are thin. Feeding her is still very time consuming and requires quite a bit of focus from me. I have realized that I don't like the open cup at all. Jordan has a tendency to lean her head forward, diving into it at the last second, and breathing in at the same time and usually ends up gulping it with a bunch of air - completely what she's not supposed to do!! I have found that although labor intensive, spoon feeding her liquids seems to be the best way to safely get them into her tummy.
I am getting more concerned about the quantity of liquids she is consuming on a daily basis. The past 2 days she has been right around 10 oz of Pediasure mixture for the entire day!! She was around 15 oz consistently for the past several weeks. This drop in quantity might be due to the fact we are now thickening it or that we switched to Pediasure. My primary concern is that she is probably borderline dehydrated most of the time. In fact, yesterday she only had to to have her diaper changed when she got up, once in the afternoon, and then again before bed. I know they wanted me to watch it closely with her and so I will see what happens today and discuss it at her therapy tomorrow.
Overall, Jordan still continues to "seem" fine. She is the happiest and most content baby EVER!!! I love to see her make small accomplishments - in the past week or so she started being able to hold a toy in one hand and pick up another in the other one. We have also worked on teaching her how to wave bye-bye. She is constantly banging 2 toys together now also. It is so much fun to work with her and see the joy it brings her to be able to do things! I am anticipating watching her continue to blossom as we move forward in her therapy.
I am getting more concerned about the quantity of liquids she is consuming on a daily basis. The past 2 days she has been right around 10 oz of Pediasure mixture for the entire day!! She was around 15 oz consistently for the past several weeks. This drop in quantity might be due to the fact we are now thickening it or that we switched to Pediasure. My primary concern is that she is probably borderline dehydrated most of the time. In fact, yesterday she only had to to have her diaper changed when she got up, once in the afternoon, and then again before bed. I know they wanted me to watch it closely with her and so I will see what happens today and discuss it at her therapy tomorrow.
Overall, Jordan still continues to "seem" fine. She is the happiest and most content baby EVER!!! I love to see her make small accomplishments - in the past week or so she started being able to hold a toy in one hand and pick up another in the other one. We have also worked on teaching her how to wave bye-bye. She is constantly banging 2 toys together now also. It is so much fun to work with her and see the joy it brings her to be able to do things! I am anticipating watching her continue to blossom as we move forward in her therapy.
Friday, June 6, 2008
Appointment with the Specialist at DeVos Children's Hospital
Yesterday I had a phone call from Nancy at Dr. Burdo-Hartman's office. She is the pediatric neurodevelopmental specialist at the DeVos Children's Hospital Pediatric Feeding Clinic. I had about a 20 minute phone interview and was scheduled for an evaluation appointment on July 3rd. Although it is a month away, it actually is a very good thing because she normally schedules a few months out.
At the appointment she will be evaluated by Dr. Wendy Burdo-Hartman (pediatric neurodevelopmental specialist), Dr. Pasternak (behavioral psychologist), and occupational therapist, and a nutritionist. Together they will determine what needs to be done with Jordan - therapy, additional tests, etc...
This is a very good step in determining what is going on with Jordan from all perspectives. The multidisciplinary approach will hopefully provide a stronger diagnosis and treatment program than having her evaluated by everyone separately (like KOS had done physical and neurological, but MFB is doing oral motor only). Please be in prayer about the evaluation and all Dr.'s participating in it.
At the appointment she will be evaluated by Dr. Wendy Burdo-Hartman (pediatric neurodevelopmental specialist), Dr. Pasternak (behavioral psychologist), and occupational therapist, and a nutritionist. Together they will determine what needs to be done with Jordan - therapy, additional tests, etc...
This is a very good step in determining what is going on with Jordan from all perspectives. The multidisciplinary approach will hopefully provide a stronger diagnosis and treatment program than having her evaluated by everyone separately (like KOS had done physical and neurological, but MFB is doing oral motor only). Please be in prayer about the evaluation and all Dr.'s participating in it.
Thursday, June 5, 2008
Hannah is my Hero!!!
Hannah at MFB just called and told me that everything from the start has been authorized by our insurance!!! This morning she faxed the report from the neurologist and the report from the swallow study yesterday to our insurance company and told them that they needed to process it asap. She went above the person who had originally handled Jordan's case and pretty much followed up constantly to make sure they understood the severity of the situation. I am soooooo glad to have her on Jordan's team for all of this!! Thanks Hannah!!!!!
Thank you also to everyone who is praying for Jordan. I know that God is working in and through this whole situation. I know that without prayer, I would never have the energy to keep going everyday without breaking down. Although everyday is exhausting, somehow I manage to get through (sometimes I think the caffeine helps!) Please continue to pray for Jordan, our family, and the team of individuals that are working to determine what's going on and give her what she needs.
Thank you also to everyone who is praying for Jordan. I know that God is working in and through this whole situation. I know that without prayer, I would never have the energy to keep going everyday without breaking down. Although everyday is exhausting, somehow I manage to get through (sometimes I think the caffeine helps!) Please continue to pray for Jordan, our family, and the team of individuals that are working to determine what's going on and give her what she needs.
Videofluoroscopy & MFB
Yesterday we had a busy day of evaluating Jordan! We started at MFB with a weight check. Jordan was down to 14 lbs 4 oz - That's back to where she was a month ago and almost a pound down from where she was 2 weeks ago. Although it is frustrating and somewhat concerning to see her losing weight, we had to take into account the fact that we have completely changed everything about her eating in the past month. She has been weaned from breastfeeding and had to start using formula through a bottle and a Solo cup for her liquids. We have messed with the formula itself - thickening it by using yogurt and pudding - foods she wasn't used to. And introducing an additional "meal" of solids and stopping 2 milk feedings. I guess if someone messed with my "normal" I might not eat as much either! On the good side, she did grow in length a small amount showing that she's getting enough nutrition to grow!
Nurse Jane and Ellen explained that Jordan has been getting enough nutrition to either stay healthy or grow. She chose to stay healthy, which is why she is almost never sick (other than a few colds during the winter and her 2 recent ear infections). If she had chosen to grow, she most likely would have been sick quite frequently over the past year. They were both amazed that she never had bronchitis or pneumonia!
After the weight check, they confirmed that I need to switch her to Pediasure for the additional calories. Good think I stopped at Meijer last night and bought some!
Then we headed over to St. Mary's for the videofluoroscopy. We put Jordan in a little seat and strapped her in. The radiologist took his position next to the machine, and Ellen (our therapist) was ready with all of the different liquids and foods mixed with barium, and the bottles, cups, and bowls. We tried various types of thicknesses in various ways (bottle, cup, spoon) to see how she would react to it. Jordan wasn't on her best behavior but wasn't on her worst either. Ellen was recording everything so that after we were done, she burned a dvd and we headed back to MFB to review the video.
There were several things that the video showed. Jordan had penetration (where the food/liquid starts to go into the lungs but stops before it does and then continues to the stomach), aspiration (where the liquid actually goes past the flap into the lungs), and she also had a hard time managing the food (actually swallowing it all the way down - it would stop 1/2 way down and just sit there). She also had some going up into her nasal passages. Ellen wanted to evaluate the video more and will have a full report for me next week.
In the meantime, I was given some additional instructions for feeding her. I can give her a bottle of nectar thick liquid only if she is very cooperative and doesn't start getting sloppy/sounding gurgley/spitting out the bottle - I have a 5 minute timeframe on the bottle because then she tires and gets sloppy with her swallowing. For meals, I can give her a Solo cup with honey thick liquids unless she starts getting sloppy/sounding gurgley/coughing/gagging. At that point, I have to thicken the liquid to a honey/pudding thickness and feed her by spoon. I also need to thicken the liquidy stage 2 purees to a pudding thickness. She told me to observe her clinically when I am feeding her. Ellen told me that she know this is very labor intensive, but that she wants to make sure Jordan gets as much as possible without tiring or having problems swallowing which can cause serious complications.
Nurse Jane and Ellen together discussed that I need to closely monitor Jordan in the next few days for dehydration and/or bronchitis or upper respiratory issues. Ellen was going to call the pediatrician's office and inform them that if I call with any concerns in the next few days that I am not an over-reactive parent but that my concerns are legitimate since we know that she is not getting a lot of fluids and she is aspirating while drinking/eating. They also decided that they definitely want her to be evaluated by Dr. Burdo-Hartman at the DeVos Children's Hospital.
I was gone from 10-1:45 for this appointment - I was exhausted when I got home!!! I am glad we were able to see what Jordan is doing and I look forward to seeing what Ellen wants to do. She mentioned there are 2 types of feeding tubes that we may need to use to ensure Jordan gets enough nutrition and fluids. I don't necessarily want to have to go to that extent, but I just want to make sure that we do everything we can to ensure Jordan is getting everything her little body needs to stay healthy and grow!!
This information, together with the neurologist's report, I am hoping and praying will be enough to qualify Jordan for our insurance coverage. Although, we will still be following through with the Children's Special Health Care Services.
Nurse Jane and Ellen explained that Jordan has been getting enough nutrition to either stay healthy or grow. She chose to stay healthy, which is why she is almost never sick (other than a few colds during the winter and her 2 recent ear infections). If she had chosen to grow, she most likely would have been sick quite frequently over the past year. They were both amazed that she never had bronchitis or pneumonia!
After the weight check, they confirmed that I need to switch her to Pediasure for the additional calories. Good think I stopped at Meijer last night and bought some!
Then we headed over to St. Mary's for the videofluoroscopy. We put Jordan in a little seat and strapped her in. The radiologist took his position next to the machine, and Ellen (our therapist) was ready with all of the different liquids and foods mixed with barium, and the bottles, cups, and bowls. We tried various types of thicknesses in various ways (bottle, cup, spoon) to see how she would react to it. Jordan wasn't on her best behavior but wasn't on her worst either. Ellen was recording everything so that after we were done, she burned a dvd and we headed back to MFB to review the video.
There were several things that the video showed. Jordan had penetration (where the food/liquid starts to go into the lungs but stops before it does and then continues to the stomach), aspiration (where the liquid actually goes past the flap into the lungs), and she also had a hard time managing the food (actually swallowing it all the way down - it would stop 1/2 way down and just sit there). She also had some going up into her nasal passages. Ellen wanted to evaluate the video more and will have a full report for me next week.
In the meantime, I was given some additional instructions for feeding her. I can give her a bottle of nectar thick liquid only if she is very cooperative and doesn't start getting sloppy/sounding gurgley/spitting out the bottle - I have a 5 minute timeframe on the bottle because then she tires and gets sloppy with her swallowing. For meals, I can give her a Solo cup with honey thick liquids unless she starts getting sloppy/sounding gurgley/coughing/gagging. At that point, I have to thicken the liquid to a honey/pudding thickness and feed her by spoon. I also need to thicken the liquidy stage 2 purees to a pudding thickness. She told me to observe her clinically when I am feeding her. Ellen told me that she know this is very labor intensive, but that she wants to make sure Jordan gets as much as possible without tiring or having problems swallowing which can cause serious complications.
Nurse Jane and Ellen together discussed that I need to closely monitor Jordan in the next few days for dehydration and/or bronchitis or upper respiratory issues. Ellen was going to call the pediatrician's office and inform them that if I call with any concerns in the next few days that I am not an over-reactive parent but that my concerns are legitimate since we know that she is not getting a lot of fluids and she is aspirating while drinking/eating. They also decided that they definitely want her to be evaluated by Dr. Burdo-Hartman at the DeVos Children's Hospital.
I was gone from 10-1:45 for this appointment - I was exhausted when I got home!!! I am glad we were able to see what Jordan is doing and I look forward to seeing what Ellen wants to do. She mentioned there are 2 types of feeding tubes that we may need to use to ensure Jordan gets enough nutrition and fluids. I don't necessarily want to have to go to that extent, but I just want to make sure that we do everything we can to ensure Jordan is getting everything her little body needs to stay healthy and grow!!
This information, together with the neurologist's report, I am hoping and praying will be enough to qualify Jordan for our insurance coverage. Although, we will still be following through with the Children's Special Health Care Services.
Tuesday, June 3, 2008
WIC
Today I went to apply for WIC. We received benefits for Conner for some basic foods - milk, eggs, cereal, juice, cheese, and cereal) and for Jordan for her Pediasure. I am glad that we will be able to have some of these basic needs provided for.
Becky Schut came along to help me and I am very thankful that she was there! Conner is such a busy guy that there was no way I could have had a conversation with them without numerous interruptions. During the exam, neither of the kids cried when they had their finger poked - that was a relief! I was somewhat concerned that Jordan lost weight for the 2nd week in a row! I know that since the last 3 weights were take at different locations on different scales, they might be off a little. I am anxious to see what her weight is tomorrow at MFB.
Becky Schut came along to help me and I am very thankful that she was there! Conner is such a busy guy that there was no way I could have had a conversation with them without numerous interruptions. During the exam, neither of the kids cried when they had their finger poked - that was a relief! I was somewhat concerned that Jordan lost weight for the 2nd week in a row! I know that since the last 3 weights were take at different locations on different scales, they might be off a little. I am anxious to see what her weight is tomorrow at MFB.
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