Hannah at MFB called and we are scheduled for Jordan to have a video swallow study done next Wednesday, 6/4!!! Hopefully, this will provide some clear identification on what that girl is doing when she swallows! She is very quiet about it most of the time and won't let the therapist use her scope to listen. So we will finally have a clear visual on what is going on!
Please pray that she stays healthy and that everything goes smoothly during this process. The appointment is over 2 hours long so it will be interesting to see how it is done.
Thursday, May 29, 2008
Applying for Assistance
Yesterday I made lots of phone calls and tried to figure out what we can do to apply for various types of assistance.
The receptionist at WMP suggested we look into WIC so I called to find out. Because of Jordan's medical situation, she should qualify - especially for the Pediasure since we have a prescription. However, I was surprised that we might also qualify for Conner based on income. We were just under the level she quoted over the phone and based on our 2007 W2's, we were eligible.
I have an appointment next Tuesday at 8:15 am to apply. I have to take both of the kids and some legal and financial documentation but hopefully, we will get some assistance to cover at least the Pediasure and maybe some other basics.
I also called on the Children's Special Health Care Services (CSHCS) and was told I need to be referred by MFB and the neurologist. The process will be 4-6 weeks while they determine eligibility and then if approved, I will receive an application. It should cover all medical care and treatment for her diagnosed conditions.
After several phone calls to Hannah at MFB and Karen at WMP, I am on the way to getting the necessary referrals to move forward with CSHCS. I will need to see a specialist at the Gerber Feeding Clinic at the DeVos Children's Hospital for the referral and I am now waiting to be referred to see the specialist.
The receptionist at WMP suggested we look into WIC so I called to find out. Because of Jordan's medical situation, she should qualify - especially for the Pediasure since we have a prescription. However, I was surprised that we might also qualify for Conner based on income. We were just under the level she quoted over the phone and based on our 2007 W2's, we were eligible.
I have an appointment next Tuesday at 8:15 am to apply. I have to take both of the kids and some legal and financial documentation but hopefully, we will get some assistance to cover at least the Pediasure and maybe some other basics.
I also called on the Children's Special Health Care Services (CSHCS) and was told I need to be referred by MFB and the neurologist. The process will be 4-6 weeks while they determine eligibility and then if approved, I will receive an application. It should cover all medical care and treatment for her diagnosed conditions.
After several phone calls to Hannah at MFB and Karen at WMP, I am on the way to getting the necessary referrals to move forward with CSHCS. I will need to see a specialist at the Gerber Feeding Clinic at the DeVos Children's Hospital for the referral and I am now waiting to be referred to see the specialist.
Insurance Denies the Prescription!!!
I went to Meijer to get the antibiotic prescription filled because it's FREE!! I also gave them the one for the Pediasure. They told me to come back in a 1/2 hr. I shopped around for a few things we needed.
When I returned they said they didn't need to fill the Pediasure because it was an over the counter item. I explained that I understood that, but since it was prescribed by my Dr. and the large quantity needed I wanted it to go through my insurance. She told me to wait and they would run it through. After waiting for another 1/2 hr, she came back and told me that my insurance denied it!
I would like to say that I was surprised, but I wasn't. I was however, very frustrated!!! The cost of Pediasure doesn't exactly fit into our budget! I had breastfed through the first year partly because of the cost of formula and I was looking forward to switching to milk after she turns 1 in a few weeks. My friend, had received cases of Enfacare for her triplets and had offered to give us some since she wasn't using it anymore. I was excited and the nutritionists at MFB had given it the okay. Now I was being asked to give her something that provided the calories and nutrition that she needed, but was too expensive for us to afford and our insurance wasn't going to help.
When I returned they said they didn't need to fill the Pediasure because it was an over the counter item. I explained that I understood that, but since it was prescribed by my Dr. and the large quantity needed I wanted it to go through my insurance. She told me to wait and they would run it through. After waiting for another 1/2 hr, she came back and told me that my insurance denied it!
I would like to say that I was surprised, but I wasn't. I was however, very frustrated!!! The cost of Pediasure doesn't exactly fit into our budget! I had breastfed through the first year partly because of the cost of formula and I was looking forward to switching to milk after she turns 1 in a few weeks. My friend, had received cases of Enfacare for her triplets and had offered to give us some since she wasn't using it anymore. I was excited and the nutritionists at MFB had given it the okay. Now I was being asked to give her something that provided the calories and nutrition that she needed, but was too expensive for us to afford and our insurance wasn't going to help.
Another Ear Infection...
Jordan had congestion and a cough all weekend and then on Sunday developed a rash all over her torso. I almost thought it could be chicken pox since her babysitter was "possibly" diagnosed with shingles 2 days after watching her a few weeks before. There was never a change into blisters or scabs so I was pretty sure it was something else.
Jordan weighed in at 14lbs. 13 oz. which surprised me because a week ago at MFB she weighed in at 15lbs. 3 oz. I'm not sure if someone's scale isn't working or if she dropped weight?!?! She is scheduled to be weighed at MFB in another week, so I will wait until then to see what she's at.
Linda identified the rash as a reactiont to detergents, soaps, lotions, etc. We had used Cetaphil for a long time but a few months ago when I ran out, I tried Johnson's and she seemed fine with it. She asked me to use Aquaphor Baby Gentle Wash and Healing Cream and start washing her clothes in Dreft. Jordan had a huge coughing spell while we were there and Linda listened quite a bit to her chest but determined that her lungs were clear and it was all in her airway. She recommended we use a vaporizer in her room and raise the head of her bed. She did identify that she had an ear infection in her left ear and prescribed antibiotics.
I mentioned that the therapist and nutritionist at MFB would like to put her on Pediasure instead of formula and asked if that was okay. She thought it should be fine since she's almost a year old. She offered to write a prescription since it is such a large quantity and being medically suggested. I was very thankful that she offered to do this!
Jordan weighed in at 14lbs. 13 oz. which surprised me because a week ago at MFB she weighed in at 15lbs. 3 oz. I'm not sure if someone's scale isn't working or if she dropped weight?!?! She is scheduled to be weighed at MFB in another week, so I will wait until then to see what she's at.
Linda identified the rash as a reactiont to detergents, soaps, lotions, etc. We had used Cetaphil for a long time but a few months ago when I ran out, I tried Johnson's and she seemed fine with it. She asked me to use Aquaphor Baby Gentle Wash and Healing Cream and start washing her clothes in Dreft. Jordan had a huge coughing spell while we were there and Linda listened quite a bit to her chest but determined that her lungs were clear and it was all in her airway. She recommended we use a vaporizer in her room and raise the head of her bed. She did identify that she had an ear infection in her left ear and prescribed antibiotics.
I mentioned that the therapist and nutritionist at MFB would like to put her on Pediasure instead of formula and asked if that was okay. She thought it should be fine since she's almost a year old. She offered to write a prescription since it is such a large quantity and being medically suggested. I was very thankful that she offered to do this!
MFB Therapy
In the first 3 weeks of therapy we saw 3 different people (Deb, Ellen, Linda) - today (5/27) we are back to Ellen, who will be our therapist from here on out. She was waiting to hear from the pediatrician's office about the video swallow study - she had called and requested it over a week ago. Since Jordan had a cough and a rash, I had scheduled an appointment for later in the day and would ask about it then.
Ellen and the nutritionist were somewhat concerned that Jordan isn't getting nearly enough formula - partly for caloric reasons, partly for hydration reasons. She normally gets 3 bottles a day and takes about 2 oz each time but it takes her 20 minutes. They asked me to see if her pediatrician was okay with me switching her to Pediasure instead of formula. It has 30 calories per oz. rather than the 20-22 per oz in the formula we are currently using. Starting this week, I am now going to thicken all of her formula with either pudding or yogurt to add calories and move to a stage 2 nipple to increase the flow rate. Hopefully she will take more in a shorter time frame and not tire out from eating and also get more calories in each feeding. They recommended I switch to the Dr. Brown's feeding system with the wide bottles because they are the softest nipples and require less work for Jordan.
Ellen and the nutritionist were somewhat concerned that Jordan isn't getting nearly enough formula - partly for caloric reasons, partly for hydration reasons. She normally gets 3 bottles a day and takes about 2 oz each time but it takes her 20 minutes. They asked me to see if her pediatrician was okay with me switching her to Pediasure instead of formula. It has 30 calories per oz. rather than the 20-22 per oz in the formula we are currently using. Starting this week, I am now going to thicken all of her formula with either pudding or yogurt to add calories and move to a stage 2 nipple to increase the flow rate. Hopefully she will take more in a shorter time frame and not tire out from eating and also get more calories in each feeding. They recommended I switch to the Dr. Brown's feeding system with the wide bottles because they are the softest nipples and require less work for Jordan.
Wednesday, May 21, 2008
Today's Pediatric Neurologist appointment
This morning Derrick and I took Jordan to Ken-O-Sha to see the Pediatric Neurologist, Dr. David VanDyke. We were met by Betsy, our therapist and she attended the meeting as well. Dr. VanDyke interviewed us about the pregnancy, birth, family history, and development to this point, and then did a short evaluation of Jordan. He provided us with an idea of what he thinks is going on with her.
He identified delayed gross motor, delayed fine motor, and abnormalities in oral motor. He was concerned with her head circumference being less than 3 percent on the growth chart, even though it was similar in percentage to her body size. He considered her alert, curious, and to have good facial expression. She has no words/language and only a few consonant sounds. With her hands, she has difficulty isolating movements with one hand - she is clumsy and has tremors when reaching for things. She can weight-bear a little when held to standing and he identified a jaw jerk.
He felt that there is a difference in neurological development and identified it as "Upper Motor Neuron Difference." The cause, however, is more difficult to identify. He felt that the most likely underlying cause was the low fluid and poor placental growth during the pregnancy. He was encouraged that she was healthy and has had no experiences of pneumonia. Essentially, her central nervous system is developing differently.
Dr. VanDyke believes that it will continue throughout her life but cannot identify how much of a problem it will be. He said that delays are expected but the significance is unknown. He is anticipating that there will be minor dysfunctions such as learning disabilities and being clumsy. He feels that she is currently in the right program at Ken-O-Sha and Mary Free Bed. Continued appropriate therapy and school and home care is what we will need to work on. He would like to see gradual improvement and for us to watch for efficiency. While she is doing okay, he would like to see things going along better. He felt that this was a delay not a disability.
He recommended some diagnostic studies to help in identifying what is going on, mostly out of curiosity. An MRI of her brain might show what is happening now but will be very beneficial in creating a baseline for another MRI 2-3 years from now. He was also somewhat interested in doing some metabolic studies to look into her delayed growth.
He was interested in my family history because I am adopted and don't have a lot of info to go on. I will call my birth mother and see if she knows of anything of significance. He also said that the pathology report on the placenta identified an infection related to a maternal history of blood clots.
He didn't feel that there was a specific diagnosis that would identify what is going on. He felt that nothing designates cerebral palsy at this point but it may be identified later on. Cerebral palsy is graded 1-5 and he felt that she might fall into grade 1. He said that she could be diagnosed with CP at this point, but that it is very possible that with this early intervention and therapies that she might develop passed those minimum requirements in the next few years.
Dr. VanDyke was extremely interesting and informational and provided us with a whole new direction in which to view Jordan's delays. We now feel very strongly that something happened during the pregnancy and that it somehow affected the development of Jordan's brain and how it works. This will hopefully also allow the insurance company to re-evaluate the coverage of her therapy at MFB based on the identification of a medical reason behind her delays. We anticipate viewing the Dr's written report and will update everyone with anything else we find out from him.
I am unsure what to think of it all...I guess I need a few days to process everything. Part of me doesn't want a CP diagnosis because I'm afraid of the label and what impact it might have on the rest of Jordan's life. Part of me wants the CP diagnosis because it is something concrete that we can identify and say "this is what she has." I will be doing some research over the next few days and hopefully have a conversation with Betsy on Friday when she comes for therapy to see what her thoughts are on all of it.
Please continue to pray for Jordan and the Dr.'s and our whole family as we journey through this process.
Thank You!!!!!
He identified delayed gross motor, delayed fine motor, and abnormalities in oral motor. He was concerned with her head circumference being less than 3 percent on the growth chart, even though it was similar in percentage to her body size. He considered her alert, curious, and to have good facial expression. She has no words/language and only a few consonant sounds. With her hands, she has difficulty isolating movements with one hand - she is clumsy and has tremors when reaching for things. She can weight-bear a little when held to standing and he identified a jaw jerk.
He felt that there is a difference in neurological development and identified it as "Upper Motor Neuron Difference." The cause, however, is more difficult to identify. He felt that the most likely underlying cause was the low fluid and poor placental growth during the pregnancy. He was encouraged that she was healthy and has had no experiences of pneumonia. Essentially, her central nervous system is developing differently.
Dr. VanDyke believes that it will continue throughout her life but cannot identify how much of a problem it will be. He said that delays are expected but the significance is unknown. He is anticipating that there will be minor dysfunctions such as learning disabilities and being clumsy. He feels that she is currently in the right program at Ken-O-Sha and Mary Free Bed. Continued appropriate therapy and school and home care is what we will need to work on. He would like to see gradual improvement and for us to watch for efficiency. While she is doing okay, he would like to see things going along better. He felt that this was a delay not a disability.
He recommended some diagnostic studies to help in identifying what is going on, mostly out of curiosity. An MRI of her brain might show what is happening now but will be very beneficial in creating a baseline for another MRI 2-3 years from now. He was also somewhat interested in doing some metabolic studies to look into her delayed growth.
He was interested in my family history because I am adopted and don't have a lot of info to go on. I will call my birth mother and see if she knows of anything of significance. He also said that the pathology report on the placenta identified an infection related to a maternal history of blood clots.
He didn't feel that there was a specific diagnosis that would identify what is going on. He felt that nothing designates cerebral palsy at this point but it may be identified later on. Cerebral palsy is graded 1-5 and he felt that she might fall into grade 1. He said that she could be diagnosed with CP at this point, but that it is very possible that with this early intervention and therapies that she might develop passed those minimum requirements in the next few years.
Dr. VanDyke was extremely interesting and informational and provided us with a whole new direction in which to view Jordan's delays. We now feel very strongly that something happened during the pregnancy and that it somehow affected the development of Jordan's brain and how it works. This will hopefully also allow the insurance company to re-evaluate the coverage of her therapy at MFB based on the identification of a medical reason behind her delays. We anticipate viewing the Dr's written report and will update everyone with anything else we find out from him.
I am unsure what to think of it all...I guess I need a few days to process everything. Part of me doesn't want a CP diagnosis because I'm afraid of the label and what impact it might have on the rest of Jordan's life. Part of me wants the CP diagnosis because it is something concrete that we can identify and say "this is what she has." I will be doing some research over the next few days and hopefully have a conversation with Betsy on Friday when she comes for therapy to see what her thoughts are on all of it.
Please continue to pray for Jordan and the Dr.'s and our whole family as we journey through this process.
Thank You!!!!!
MFB Therapy yesterday
Yesterday at Jordan's MFB therapy they started by weighing her. They were excited she gained weight!! .4 kilograms - what did that mean?? After coming home and bringing up my online conversion calculator, I found out that it was about 14 ounces! Wow - just under a pound in 2 weeks! I have been amazed at how much she is eating at some meals! I also think that by weaning her, we are now able to track the exact amount of formula she is getting per feeding. She actually took 5 oz the other day at a feeding! In the past, when giving a bottle, she would almost always take around 2 oz. Now, she almost always takes around 4 oz in a bottle. As hard as it was to wean her (I cried before, during and after her last nursing), I know it was the right thing to do.
This week during therapy they helped me determine what type of bottle I should be using with her and how to hold her. I brought along 4 different bottles we had at our house (3 of them were from Conner) and they immediately ruled out the one I had bought for Jordan because they didn't like the shape of the nipple and the location of the hole. The liked one of the Playtex ones the best because it had a short nipple and a wide base giving her a good area to create suction. They also want me to stick with the stage 1 nipples because she drinks too fast from the stage 2 ones and can't control her swallowing making it likely for her to aspirate.
I started feeding her and the therapist, Linda tried to listen to her swallowing with a stethoscope, but Jordan was too interested in it. She kept grabbing it and playing with it and stopped drinking. Finally, Linda just tried to sit there and see if she could hear anything. There wasn't anything significant, but she encouraged me to hold her more upright so she had to control the swallowing rather than just letting it go down on it's own. Jordan wasn't very interested because she had eaten a HUGE breakfast only 2 hours before and having an audience of 3 didn't help.
We moved her into the highchair for some purees. They had me feed her and talked with me about her tongue placement before putting the spoon in her mouth. The tongue should be forward and making a cup to hold the spoon/food. If she has it retracted in her mouth, I need to use the spoon to help push it into it's proper position before giving her the food. I also learned that I shouldn't pull the spoon out curving it upward to clean it off. I need to let Jordan's upper lip learn to do the work by pulling it straight out.
I have several things I have to do differently to feed Jordan and in the past day I have tried to change some things. It is interesting how much I have to think through everything I am doing with her now. With both Mak and Conner, I just fed them and didn't really have to think about anything. I have found myself just going through the motions of feeding her and forgetting to look for the tongue placement and pulling the spoon out straight. The therapy for Jordan is actually therapy for me!!!
This week during therapy they helped me determine what type of bottle I should be using with her and how to hold her. I brought along 4 different bottles we had at our house (3 of them were from Conner) and they immediately ruled out the one I had bought for Jordan because they didn't like the shape of the nipple and the location of the hole. The liked one of the Playtex ones the best because it had a short nipple and a wide base giving her a good area to create suction. They also want me to stick with the stage 1 nipples because she drinks too fast from the stage 2 ones and can't control her swallowing making it likely for her to aspirate.
I started feeding her and the therapist, Linda tried to listen to her swallowing with a stethoscope, but Jordan was too interested in it. She kept grabbing it and playing with it and stopped drinking. Finally, Linda just tried to sit there and see if she could hear anything. There wasn't anything significant, but she encouraged me to hold her more upright so she had to control the swallowing rather than just letting it go down on it's own. Jordan wasn't very interested because she had eaten a HUGE breakfast only 2 hours before and having an audience of 3 didn't help.
We moved her into the highchair for some purees. They had me feed her and talked with me about her tongue placement before putting the spoon in her mouth. The tongue should be forward and making a cup to hold the spoon/food. If she has it retracted in her mouth, I need to use the spoon to help push it into it's proper position before giving her the food. I also learned that I shouldn't pull the spoon out curving it upward to clean it off. I need to let Jordan's upper lip learn to do the work by pulling it straight out.
I have several things I have to do differently to feed Jordan and in the past day I have tried to change some things. It is interesting how much I have to think through everything I am doing with her now. With both Mak and Conner, I just fed them and didn't really have to think about anything. I have found myself just going through the motions of feeding her and forgetting to look for the tongue placement and pulling the spoon out straight. The therapy for Jordan is actually therapy for me!!!
Thursday, May 15, 2008
Today's update!
Jordan seems to be doing very well drinking from a cup. She only coughs a once or twice per meal and usually because I gave her too much at once. It does take quite a bit longer to get through a meal. Dinner on the first night took 1 hour!! I'm sure with time it will be much easier and quicker for us to feed her. Part of the reason is because she takes such a long time with each bite of food/drink. She processes the food/drink in her mouth for 6-8 seconds before swallowing. Then it takes her another 5-10 seconds or longer before she is willing to open her mouth for another bite/drink. She is soooo different from Conner - we couldn't shovel the food in fast enough for that boy!!
Betsy called yesterday and cancelled her therapy for tomorrow because of a death in her family. I'm actually kinda glad because yesterday we had Conner's speech evaluation and I feel like I have been too busy the past few weeks. A day off will be nice. Of course, we will still work with her at home, but at our own convenience.
I have also pretty much conceded that it is better for Jordan to switch to using a bottle rather than nursing. I don't know that she is getting enough when nursing and I have no way to actually track her intake. Although the cost is frightening, I truly believe it will provide her with better nutrition than I am able to provide for her at this point. I have been weaning over the past week and a half and will probably nurse her for the last time this weekend.
What a sad thing!! A part of me wants to hold on to it because I love the feeling of holding her and providing her with the milk that was her only nutrition for such a long time. I guess knowing she is my last baby also makes it hard to stop. I have considered continuing one nursing per day but she is now down to only 3 bottles/nursings per day and I feel that her nutrition is more important than my wanting her to stay my baby forever!
Betsy called yesterday and cancelled her therapy for tomorrow because of a death in her family. I'm actually kinda glad because yesterday we had Conner's speech evaluation and I feel like I have been too busy the past few weeks. A day off will be nice. Of course, we will still work with her at home, but at our own convenience.
I have also pretty much conceded that it is better for Jordan to switch to using a bottle rather than nursing. I don't know that she is getting enough when nursing and I have no way to actually track her intake. Although the cost is frightening, I truly believe it will provide her with better nutrition than I am able to provide for her at this point. I have been weaning over the past week and a half and will probably nurse her for the last time this weekend.
What a sad thing!! A part of me wants to hold on to it because I love the feeling of holding her and providing her with the milk that was her only nutrition for such a long time. I guess knowing she is my last baby also makes it hard to stop. I have considered continuing one nursing per day but she is now down to only 3 bottles/nursings per day and I feel that her nutrition is more important than my wanting her to stay my baby forever!
Tuesday, May 13, 2008
Today's MFB Therapy
Wow! Today's therapy was interesting! After talking with the therapist and nutritionists about the insurance company (see my post "the next step...), we started Jordan's therapy.
After a brief evaluation of Jordan, we worked on drinking from sippy cups. I have spent the past month working with her to get her to take formula from a sippy cup at mealtimes. She normally takes between 1-2 oz per meal. Today her therapist, Ellen, experimented with 3 cups that I brought from home. She ruled one out immediately because she was getting too much at once from it. The other 2 were okay, but she was drooling down her chin after every sip as well as coughing and sounding very wet. She said that Jordan was very active and busy and that she loved immediate gratification. She wanted to gulp it even though she didn't really know what to do with it when it was in her mouth. She was very concerned with her aspirating it into her lungs. She also like to feed like a bird and she would push out her chest and lift up her chin. That makes it difficult to swallow and more likely for liquids to go down the wrong tube into the lungs.
She also noticed that she didn't seem to have a cough reflex. Normally a person that had liquids go down the wrong tube would reflexively cough to get it out. Jordan didn't do that. She would just continue to breathe for a little while until finally she would cough and clear it. She said that this may be something that has been happening for so long, that the nerve endings in her lungs are no longer reacting normally to the liquid there. She tried thickening the liquid into a nectar and that seemed to help a little bit with the drooling but she still coughed after almost every sip. She said we might go to a honey mixture if this continues to be a problem.
She decided that the sippy cup wasn't going to work for Jordan. She went and got a clear plastic Solo cup and tried to use that. Over and over again she gave Jordan just a little bit of liquid at a time. She stopped coughing!! She eventually had me take over so I could learn to give her the adequate amount. It was amazing that her cough was gone!! I was so used to hearing her cough when I gave her a drink that it was almost strange to not having her do it anymore. We were thrilled that Jordan was doing so well! Quite often she would start to bird feed again and I would have to push on her chest and wait for her to lower her chin before I could put the cup to her lips. Then if she started to chew or mouth the cup, I would wait for her to get suction with her lips before tilting the liquid for her. It was quite a process!
Ellen sent me home with a Solo cup to use at home as well as thickening recipes to make a nectar. I guess I will just need to plan a longer time for feeding her because it takes quite a bit longer when she only gets a small sip at a time. I am amazed at how the therapists at MFB have the ability to find such a small change and the big difference it can make!
After a brief evaluation of Jordan, we worked on drinking from sippy cups. I have spent the past month working with her to get her to take formula from a sippy cup at mealtimes. She normally takes between 1-2 oz per meal. Today her therapist, Ellen, experimented with 3 cups that I brought from home. She ruled one out immediately because she was getting too much at once from it. The other 2 were okay, but she was drooling down her chin after every sip as well as coughing and sounding very wet. She said that Jordan was very active and busy and that she loved immediate gratification. She wanted to gulp it even though she didn't really know what to do with it when it was in her mouth. She was very concerned with her aspirating it into her lungs. She also like to feed like a bird and she would push out her chest and lift up her chin. That makes it difficult to swallow and more likely for liquids to go down the wrong tube into the lungs.
She also noticed that she didn't seem to have a cough reflex. Normally a person that had liquids go down the wrong tube would reflexively cough to get it out. Jordan didn't do that. She would just continue to breathe for a little while until finally she would cough and clear it. She said that this may be something that has been happening for so long, that the nerve endings in her lungs are no longer reacting normally to the liquid there. She tried thickening the liquid into a nectar and that seemed to help a little bit with the drooling but she still coughed after almost every sip. She said we might go to a honey mixture if this continues to be a problem.
She decided that the sippy cup wasn't going to work for Jordan. She went and got a clear plastic Solo cup and tried to use that. Over and over again she gave Jordan just a little bit of liquid at a time. She stopped coughing!! She eventually had me take over so I could learn to give her the adequate amount. It was amazing that her cough was gone!! I was so used to hearing her cough when I gave her a drink that it was almost strange to not having her do it anymore. We were thrilled that Jordan was doing so well! Quite often she would start to bird feed again and I would have to push on her chest and wait for her to lower her chin before I could put the cup to her lips. Then if she started to chew or mouth the cup, I would wait for her to get suction with her lips before tilting the liquid for her. It was quite a process!
Ellen sent me home with a Solo cup to use at home as well as thickening recipes to make a nectar. I guess I will just need to plan a longer time for feeding her because it takes quite a bit longer when she only gets a small sip at a time. I am amazed at how the therapists at MFB have the ability to find such a small change and the big difference it can make!
The next step in our insurance company battle
Well, the insurance company isn't going to make things easy on us. I spoke with the lady who sent us the letter and she informed me that Failure to Thrive is not a diagnosis that warrants occupational therapy. She said they need a medical illness that specifically identifies what is causing it. This is most likely due to the fact that our coverage does not cover therapy due to developmental delay. Therefore unless a doctor can give a diagnosis of a medical reason she isn't eating, we will most likely not have coverage for the therapy.
I have made phone calls to Mary Free Bed and her pediatrician as well as talking to her therapist from Ken-O-Sha and Mary Free Bed and tried to figure out the best approach to take . At this point, her pediatrician's office doesn't have any additional info that they can provide to give a specific diagnosis and they think it's not likely for them to change their recommendation. The therapist from Ken-O-Sha thinks that the neurologist might be able to find something but it might be more likely to be connected to her developmental delays and not necessarily feeding problems. Her therapist and nutritionists at Mary Free Bed were very surprised that it was denied because it was a feeding issue and could becoming a life-threatening issue if not resolved.
Today her therapist did a brief re-evaluation of her and said that she would place more severity in the diagnosis and recommend additional treatment because she doesn't think that 8 weeks will be enough for her. She also said that we can do the video swallow study and see if that identifies anything specifically, however, it will most likely not show a medical illness.
Jordan has another MFB therapy appt next Tuesday and then sees the KOS neurologist on Wednesday. Hopefully we will have more info on this after that time.
I have made phone calls to Mary Free Bed and her pediatrician as well as talking to her therapist from Ken-O-Sha and Mary Free Bed and tried to figure out the best approach to take . At this point, her pediatrician's office doesn't have any additional info that they can provide to give a specific diagnosis and they think it's not likely for them to change their recommendation. The therapist from Ken-O-Sha thinks that the neurologist might be able to find something but it might be more likely to be connected to her developmental delays and not necessarily feeding problems. Her therapist and nutritionists at Mary Free Bed were very surprised that it was denied because it was a feeding issue and could becoming a life-threatening issue if not resolved.
Today her therapist did a brief re-evaluation of her and said that she would place more severity in the diagnosis and recommend additional treatment because she doesn't think that 8 weeks will be enough for her. She also said that we can do the video swallow study and see if that identifies anything specifically, however, it will most likely not show a medical illness.
Jordan has another MFB therapy appt next Tuesday and then sees the KOS neurologist on Wednesday. Hopefully we will have more info on this after that time.
Friday, May 9, 2008
The Battle Continues!!
Well, the battle with the insurance company isn't over! Yesterday we received a letter stating that "the medical policy or plan limitations exclued coverage for Occupational Therapy when treatment is not for a specific sickness/injury." Basically, without a specific diagnosis on an illness, they won't cover the feeding therapy.
As soon as I read this, I started to cry. My baby is under the growth chart, won't eat or drink well, and yet there is not as of yet, a specific reason for this. And because of this, we are expected to either not do anything for her or try to figure out a way to pay for her therapy at approximately $175 per session.
My husband was frustrated because in January, he had surgery for a bone spur on his toe. It was somewhat uncomfortable and has been bothering him for years. He joked that basically it was to fix something that just went bad as he got older. He will be having the other toe done later this year. His comment to me last night was that he would have passed on his toe surgery to make sure we didn't have to worry about Jordan's therapy being covered.
I think one of the things that is frustrating for us is that we feel as though we are still in the process of determining what is actually going on with Jordan. Diagnosis or not, there are just some things that don't seem to be quite right with her. When I was pregnant for all 3 of my children, I prayed that they would be healthy when they were born. There were absolutely no complications with Mak at any time in his growth, development, or anything. He is now a healthy 13 year old boy. Conner was always long and lean (high percentiles for length and low for weight) but he was always on the chart and extremely healthy. We have struggled with determining if his speech was delayed, and now that he just turned three, we are having him evaluated next week. With Jordan, I feel like there have been lots of little things that when I put them all together, almost overwhelm me. I just want her to be healthy and I feel that this feeding therapy is a vital step to making that happen.
Today I will be contacting Mary Free Bed to see if I can get a copy of the evaluation that was sent to the insurance company. We want to see if the report included the diagnosis of "Failure to Thrive" given by her pediatritian. If not, we are going to see if a combination of reports from the pediatritian, Ken-O-Sha, and MFB might have a bigger impact on the insurance company. I feel like the battle is just beginning, but it's one we will fight with everything we have.
MFB does have a program to reduce the cost for patients that have financial needs. We may apply for that program in the meantime, in hopes of reducing the overall cost. Derrick's work also has an employee assistance program that we may seek assistance from. I know we will make it work, but it's just another stress in my life, I don't feel like I can handle.
I am overwhelmed by the big picture of everything, but when I look at my little girl, I would do anything to help her!! Please pray that we find strength during this time. I know we will get through it, but right now I feel very weak and small.
As soon as I read this, I started to cry. My baby is under the growth chart, won't eat or drink well, and yet there is not as of yet, a specific reason for this. And because of this, we are expected to either not do anything for her or try to figure out a way to pay for her therapy at approximately $175 per session.
My husband was frustrated because in January, he had surgery for a bone spur on his toe. It was somewhat uncomfortable and has been bothering him for years. He joked that basically it was to fix something that just went bad as he got older. He will be having the other toe done later this year. His comment to me last night was that he would have passed on his toe surgery to make sure we didn't have to worry about Jordan's therapy being covered.
I think one of the things that is frustrating for us is that we feel as though we are still in the process of determining what is actually going on with Jordan. Diagnosis or not, there are just some things that don't seem to be quite right with her. When I was pregnant for all 3 of my children, I prayed that they would be healthy when they were born. There were absolutely no complications with Mak at any time in his growth, development, or anything. He is now a healthy 13 year old boy. Conner was always long and lean (high percentiles for length and low for weight) but he was always on the chart and extremely healthy. We have struggled with determining if his speech was delayed, and now that he just turned three, we are having him evaluated next week. With Jordan, I feel like there have been lots of little things that when I put them all together, almost overwhelm me. I just want her to be healthy and I feel that this feeding therapy is a vital step to making that happen.
Today I will be contacting Mary Free Bed to see if I can get a copy of the evaluation that was sent to the insurance company. We want to see if the report included the diagnosis of "Failure to Thrive" given by her pediatritian. If not, we are going to see if a combination of reports from the pediatritian, Ken-O-Sha, and MFB might have a bigger impact on the insurance company. I feel like the battle is just beginning, but it's one we will fight with everything we have.
MFB does have a program to reduce the cost for patients that have financial needs. We may apply for that program in the meantime, in hopes of reducing the overall cost. Derrick's work also has an employee assistance program that we may seek assistance from. I know we will make it work, but it's just another stress in my life, I don't feel like I can handle.
I am overwhelmed by the big picture of everything, but when I look at my little girl, I would do anything to help her!! Please pray that we find strength during this time. I know we will get through it, but right now I feel very weak and small.
Wednesday, May 7, 2008
Therapy has begun!
Jordan started therapy on April 25th. Betsy from Ken-O-Sha came to our house and we played on the floor with Jordan for just over an hour. It was very interesting to see what she could identify as things to work on just by watching her play. Tummy time is important for Jordan because she still likes to lay there and suck her fingers. I am also working on bringing her up to a crawling position. The big exercise ball is lots of fun for her to be on her tummy because it's not as boring as the floor. Jordan pushes up for short (5-10 second) periods but then goes back to those yummy fingers. We even tried putting socks on her hands to stop her!!
This past week, Betsy and I worked on Jordan banging 2 toys together. It was interesting to see that Jordan does things simultaneously but has a hard time doing separate things. She kicks her lets together but not in bicycle style. She will grab 2 toys together but can't hold 1 toy and grab another. We also tried to get Jordan to put a small ball in a container. She only got it a couple of times but it was fun to work with her on it. It's also a fun activity to play with her now! Jordan also has a very difficult time crossing her midline - she doesn't reach across herself to grab something. We worked with her on that and found that it is easier for her to cross her right over left than left over right - that's something I continue to work with her on.
Yesterday Jordan had her first feeding therapy at Mary Free Bed. I was kinda overwhelmed when the therapist brought us into the room and 3 additional therapists came in. They started by weighing her - she was about 14 lb 6 oz. and 25.6 in. (coming from memory). They plotted her on the growth chart based on previous weights from the Dr.'s office and her current weight and noticed a normal growth pattern up until about 4 months where things dropped off. I can't remember anything significant at that time that would have caused her to stop growing, but I believe that her development in all areas was fairly normal until about 4-5 months.
After that, they started feeding her and then asking me lots of questions. Jordan was hungry and did very well eating the bananas they fed her. One interesting thing they found was that if given normal spoonfuls, she would start to have congested breathing. If she was given an empty spoon and encouraged to swallow again, it would get better. When the amount of food on the spoon was reduced, she also didn't have so much congestion. This created some questions to whether we should have a swallow study done on her to see what is happening when she swallows.
The nutritionist and dietitian had lots of questions about how she nurses, eats, drinks from a bottle and sippy cup. They encouraged me to work toward getting her to eat the quantity a "normal" 10 month old eats - 3 meals a day, 2 snacks, and some milk from breast, bottle or sippy cup. This week we will be introducing a 3rd meal to her day to see how she does.
I am also considering stopping breastfeeding. I love the ability to feed her on the go and you can't beat the free cost!! However, I think that by switching to a bottle, I will be able to accurately determine how much she is getting. We even discussed just going straight to sippy cup for most milk with maybe only 1-2 bottles per day at this point.
Mostly we determined that we need to get more calories into Jordan. She's too tiny for her age and we need to see her grow. Please pray for her to eat, grow, and develop.
I am also unsure how much more I can fit into my days. I am supposed to do therapy with her several times a day for short periods but I find that I am so busy running around doing all the stuff that we are involved in or need to be done, that we aren't even home enough to have floor time several times a day. I will also now be trying to add another meal to our day. If she was an efficient eater, it might not be a problem, but she doesn't have much interest in eating and giving her small spoonfuls, it will take even longer. I figure that every meal will take 1/2 hr to 45 min. Hopefully, I will figure out how to make it work and as some of our school-year activities end, we should have more time.
I also want to ask for prayers for Conner. At his 3-year checkup, his doctor encouraged us to have him checked out for his speech. We will be having him evaluated next week. If he will need to start therapy, we will have to fit that into our schedule as well.
This past week, Betsy and I worked on Jordan banging 2 toys together. It was interesting to see that Jordan does things simultaneously but has a hard time doing separate things. She kicks her lets together but not in bicycle style. She will grab 2 toys together but can't hold 1 toy and grab another. We also tried to get Jordan to put a small ball in a container. She only got it a couple of times but it was fun to work with her on it. It's also a fun activity to play with her now! Jordan also has a very difficult time crossing her midline - she doesn't reach across herself to grab something. We worked with her on that and found that it is easier for her to cross her right over left than left over right - that's something I continue to work with her on.
Yesterday Jordan had her first feeding therapy at Mary Free Bed. I was kinda overwhelmed when the therapist brought us into the room and 3 additional therapists came in. They started by weighing her - she was about 14 lb 6 oz. and 25.6 in. (coming from memory). They plotted her on the growth chart based on previous weights from the Dr.'s office and her current weight and noticed a normal growth pattern up until about 4 months where things dropped off. I can't remember anything significant at that time that would have caused her to stop growing, but I believe that her development in all areas was fairly normal until about 4-5 months.
After that, they started feeding her and then asking me lots of questions. Jordan was hungry and did very well eating the bananas they fed her. One interesting thing they found was that if given normal spoonfuls, she would start to have congested breathing. If she was given an empty spoon and encouraged to swallow again, it would get better. When the amount of food on the spoon was reduced, she also didn't have so much congestion. This created some questions to whether we should have a swallow study done on her to see what is happening when she swallows.
The nutritionist and dietitian had lots of questions about how she nurses, eats, drinks from a bottle and sippy cup. They encouraged me to work toward getting her to eat the quantity a "normal" 10 month old eats - 3 meals a day, 2 snacks, and some milk from breast, bottle or sippy cup. This week we will be introducing a 3rd meal to her day to see how she does.
I am also considering stopping breastfeeding. I love the ability to feed her on the go and you can't beat the free cost!! However, I think that by switching to a bottle, I will be able to accurately determine how much she is getting. We even discussed just going straight to sippy cup for most milk with maybe only 1-2 bottles per day at this point.
Mostly we determined that we need to get more calories into Jordan. She's too tiny for her age and we need to see her grow. Please pray for her to eat, grow, and develop.
I am also unsure how much more I can fit into my days. I am supposed to do therapy with her several times a day for short periods but I find that I am so busy running around doing all the stuff that we are involved in or need to be done, that we aren't even home enough to have floor time several times a day. I will also now be trying to add another meal to our day. If she was an efficient eater, it might not be a problem, but she doesn't have much interest in eating and giving her small spoonfuls, it will take even longer. I figure that every meal will take 1/2 hr to 45 min. Hopefully, I will figure out how to make it work and as some of our school-year activities end, we should have more time.
I also want to ask for prayers for Conner. At his 3-year checkup, his doctor encouraged us to have him checked out for his speech. We will be having him evaluated next week. If he will need to start therapy, we will have to fit that into our schedule as well.
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