Thursday, April 29, 2010

EDS Exposure

As I said in the last post, the construction of the ramp began last Friday. People from our church, Trinity Episcopal, Hearth Professionals and COTF made everything possible. The door installation, and ramp construction took less than 2 days to complete.

While the construction was going on, a reporter from our local ABC news came out to do a story. His name is Anthony Mirones. He only had 90 seconds of air time to tell the story, but he did a great job in such a short time period. He talked to us for almost 2 hours. While he was here, Erica hurt her ankle and Elizabeth popped out her shoulder. Mr. Mirones did capture us putting her shoulder back. I was worried about this being sensationalized, but he did a great job.

Here is the link to the report:

The reason that the news crew was called out was to raise money for our project which is now called "Hometown Home Makeover", but I think it also brought some awareness to a relatively unknown problem. There was a comment on the news web site that said that she did appreciate the coverage as doctors typically only spend about 15 minutes on EDS in medical school.

The ramp is beautiful! It is fully contained in the garage, thus eliminating the problem of rain or snow. Even the door is specially designed to close automatically and opens very easily.

Erica already has her motorized wheelchair and Elizabeth will have her's soon. The ramp allows them to bring in the chairs on their own.

During all of the construction, I meet with our case worker from the Butler County Board of Developmental Delays. We interviewed companies that provide health care workers to come out to the house to help with the girls. It was total chaos, but productive. We were able to select a company and they will start working with us in a couple of weeks.

Because the girls qualified for this assistance, the Board provides some of the funds for the home modifications. We still need a lot of help with the changes, but things are progressing very quickly.

Hearth and COTF are also looking for volunteers with future phases of the modifications. If you would like to volunteer, please email me at Even if you do not have construction experience, we are still in need of people that can help carry and lift and do odd jobs.

Again, thank you for all of your support and prayers. These blessings are amazing! I can't wait to be in a house that is safe for all of us.

Wednesday, April 21, 2010

Help Has Arrived

We received the wood for the construction of the ramp today! The construction should begin on Friday and continue Saturday. We are deeply appreciative of the help and the support of our church family at Trinity Episcopal Church as well as Hearth and the Cincinnati Occupational Therapy Foundation. I will try to figure out how to upload pictures so you can follow along with us during this transformation.

This was also a good day in that Elizabeth was seen by another doctor and he cleared her from the neck collar. He wants her to be careful and not do anything to outrageous. (You can tell he does not know her). He thinks that her concussions have resolved and her neck does not need a fusion at this time. He will continue to follow her.

The best thing about this is that he was willing to put this in writing and send it to the other doctors. This allows her to be cleared for OT and PT. She will hopefully resume going to school the first week in May!

Praise the Lord!

Friday, April 16, 2010

ERs, Doctor Visits and Injections Oh, My!

This was another crazy week. It started with me going to the ER again. I had such a horrible coughing fit, that I could not stop. Chuck took me in and the fit was over when they gave me some medicine. I think that I might be over my pneumonia, finally.

On Tuesday, CJ had an asthma attach that landed him in the ER as well. He is also doing better, but the pollen is so strong this year that I am afraid that this is going to be a bad year for his asthma.

I received a call Tuesday saying that my mammogram was showing an abnormal spot. This was totally out of the blue. I was blessed in that they were able to do a diagnostic test the next day. Everything turned out fine, thanks be to God.

On Wednesday, I took Elizabeth to the pain doctor. He did some trigger point injections that were suppose to take some of the neck pain away. She has better range of motion, but the pain level is still high.

This brings us to today. I had to take my mom to the neurologist that has some experience with EDS. He did not think that my mom's problems with not breathing and central apnea were related to her EDS, again, thanks be to God. We still do not have a good answer about the girls. We will have to wait and see.

This afternoon I had to take Erica to the ophthalmologist for an eye exam. She struggles with letter reversals and reading at times. The doctor is the same one that I have gone to for over 15 years. She has done some research on EDS since I told her that I was diagnosed. She thinks that there might be some problems with her connective tissue in her eyes, but needs to re-test her in a month. She said that the lens in her eye might be dislocating from time to time causing reading problems periodically. Again, I was not ready for that one.

Erica has been in so much pain that she could not stay awake during the appointment. She basically fell asleep at 4 PM and did not even eat dinner. She went straight to bed when she got home. This usually means that she is in significant pain. Her neck has been very sore.

She also has tried to use a new set of braces that cover her feet all the way up to the mid part of her calf. Because of her skin being so fragile, she has already developed blisters. I hope that she will be able to use them eventually. We were hopeful that she could use them and get out of her wheelchair at school. We have had to suspend that idea for now. At least she has her power chair.

Tomorrow I have to take Elizabeth to see the geneticist and a flexion/extension MRI of her neck. It will be another long day.

Our mail lady is a wonderful person. She stopped to talk yesterday and I told her some of the many blessings that have come our way. She said that she could not believe that we can continue to smile, despite all of our troubles. But I think that we can appreciate the people around us more because of our difficulties. We know how to live in the moment better now after gaining perspective on what is truly and problem and what is not.

We have experienced too many blessings to get down too long, but it does get to me on days like these. I am happy that I do not have breast cancer, that my daughter is not completely blind and that we have friends and neighbors that are indispensable.

We just don't want to get through life, we want to find the good and enjoy it also long as possible, because we know that if we do not, we might not find those good time any time soon.

I hope you are able to count your blessings. I know I count many of you as our blessings and I thank you.

God Bless.

Friday, April 9, 2010

God is Faithful

Please pray for us as we continue this process of trying to make our life safer and less painful.

As I have written before, we have been greatly blessed by so many people that are moved to assist us. There has been a fundraiser at school which produced a very large check. We are very grateful for all of the efforts of so many to undertake such a task.

We have also been blessed by the two charities that have come together to raise money and donate time to fix problems in the house and make it more accessible. One is called Hearth and the other COTF (Cincinnati Occupational Therapy Foundation). We are truly overwhelmed that so many people feel compelled to help us. COTF is currently taking donations for materials for the adaptions for the house. (see

Also, we have been approved for a Level 1 waiver from the state that will assist with this modifications. This is truly a miracle and are grateful for this as well.

Our current problem is trying to find a vehicle that will accommodate 2 power chairs if not 3. We are working with a company that is trying to find a van that everyone in the family will be able to fit inside. A mini van will only provide room for 4 people. We would need to find a full sized van which raises the price considerably. Again, we have been blessed by a grant from the Allison Kline Foundation to help with the modifications that will be at least $22,000. This is on top of the actual vehicle (in the range of 25,000-35,000). Because of years of out of pocket expenses and the loss of my income, we have little in our budget. Right now, things look impossible.

I know I should not despair because God has provided at every turn on this journey. We are trying to step out in faith that all will work out some how. God has been so faithful, that I feel badly for even questioning. Just the hint of a large monthly payment makes us cringe. We just do not know where it will come from.

Please pray that we are able to keep our eyes on our Heavenly Father and trust, like a child, that He will find a way.

Sunday, April 4, 2010

Life Cut Short

Please pray for Chuck and his family. His younger cousin died Friday in Florida. He is the high school football player ESPN keeps talking about. He fell off a balcony and died. The bad part is the news is flooded with information about how he was possibly drunk and arguing with others when he died. In this situation, which one of us as not done something stupid or silly? His family is devastated. I understand the point some are making as to make sure others do not do that same thing, but really this is more of a media show than a life lesson.

Put yourself in the shoes of his parents. They will never be the same. Please show mercy and pray for them.

"Do not pass go. Do not collect $200"

Well, I guess I know why I was so tired. I went to the doctor on Tuesday and got a "Do not pass go. Do not collect $200" pass to the hospital. I was not ready for this one, but I don't know why it surprises me to go to the hospital after all of the trips in the last couple of years!

Anyway, there was so weird stuff with my heart, that resolved, but they said I had pneumonia. I was hooked up to an IV to get antibiotics because I am allergic to almost all known medications. I was thinking I would be a very boring patient but then my head swelled up like a balloon! I was allergic to the antibiotic again! I was then switched to two different antibiotics and sent home on a third. Of course, as I am writing this I am breaking out in hives from the antibiotic again! Really? I can't just take a medicine and get better?

I was introduced to a cardiologist, in the hospital that actually knew about EDS. She also knows my new neurologist. I had to go to a new neurologist about the abnormalities in my brain (no kidding). I was told by my geneticist to play down the fact that I had EDS so the doctor does not turn and run. So I was expecting a very quick visit. Well, it was not quick. He came in the room and said, "You'll never guess what I did yesterday." As strange as many of the doctor visits have been lately, I was ready for anything, except what he told me. He said that he had just given a talk at the children's hospital on the genetic reasons for strokes and part of his talk was about EDS. He got that same "sick" look on his face as many other doctors. He as very interested in my case as my images were not so ordinary after all. He got really "excited" when he heard about my mom. He wanted to see her right away. He was hopeful that he could save us a trip to the Mayo Clinic, which was rescheduled for May. He said that this was an interesting case and he only had one other patient with EDS and they did not have the same issues. I just told him I was tired of being interesting. The truly scary thing about this is the ramifications for the girls. When I went to leave, he said if I was okay with this news or have any questions. I asked him if I needed to worry this very minute. He said, "No." I said, "That's good enough for me!"

Back to the cardiologist, she said that I had to keep my blood pressure very low, so I did not have any more blood vessels breaking in the brain because of the EDS. So, add another doctor to the list.

I did get to check out the hospital in West Chester as this is the one that the spine surgeon would like Elizabeth to have the C1-C2 fusion. We have been very leery about considering a surgery outside of a children's hospital but many of those fears were put to rest after the visit. The nurses were very nice and truly care for their patients. We still have a long way to go on the decision, but it did help. I think I would have been just fine researching the hospital with a tour, not an admission.