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.
Tuesday, June 3, 2008
Thursday, May 29, 2008
Video Swallow Study!!!
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.
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.
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!!!!!
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