Friday, September 10, 2010

The Ball is Rolling

Last night we had a meeting with representatives of our groups of friends and Hearth and COTF.  It was a wonderful meeting but overwhelming as well.  It is overwhelming to see the support and love from so many people.  We got together to plan an event that will bring more attention to the fundraising event. 

We learned that $6,500 as already been donated.  We are already a 10% toward our goal with nothing more than a newspaper article!  God is moving so powerfully! 

In a matter of just a few hours so much has been accomplished!  Not for a moment do I think that any of my efforts or efforts of individuals is bringing all of this together.  It is the supply of The Almighty and His provision! 

The coolest part of this is, not only is God blessing us, but He is also allowing us to see other's eyes opened to the miracles that are happening. 

Prayers are answered, faith restored, joy is infectious! 

Friday, September 3, 2010


In the last month, I have had two surgeries.  The first was my nose.  You would not think this would be high on the list of priorities, however, I could not breath through my nose, so I could not use my CPAP.  Most people with EDS have obstructive apnea.  Because our soft tissue is really soft, the back of the throat collapses while we sleep causing the apnea in even tiny 100 lb women.  (I am not nor will I ever be 100 lbs.)   I am exhausted all the time since I have had to stop using my machine.

Anyway, my nose was "out of joint" so I had a septoplasty to fix the deviated septum.  Unfortunately, lead to a 13 hour nosebleed.  Not to go into too many details, but if you do have to have this surgery be very cautions of the words "nasal tampons".  After a night in the hospital, I was sent home.

Two weeks later I had surgery on my left arm.  I was unable to use my fingers reliably.  I would lose function dramatically through the day.  It got to the point that I had to reserve using my left hand for important tasks.

I was sent to a orthopedic hand specialist.  He determined that I needed carpel tunnel surgery as well as  having the radial nerve released in both arms.  The pain was worse on my right but it is still functional so I decided to have the left helped first.  The surgeon is very good, but he was doubtful it would restore function. 

I am happy to say that I think the surgery not only reduced the pain, but it also help me regain use.  I am only a little over 3 weeks out, but I am already very pleased with the results.

My mom dropped by yesterday.  She had a pre-op appointment with her spine surgeon.  He plans on operating on her lower back to give back some of the function of her legs, but he thinks that she has broken her back again, in the middle.  This is devastating and we are unsure what she will do.

Wednesday, September 1, 2010

Great News

The kids got back to school last week. Along with the normal anxiety, there was some added drama. CJ is in the fourth grade this year. This means he's the big man on campus. This also means much more homework an added responsibility. I'm happy to report that he is a very nice teacher and I think he will have a great school year.

Erica is going to school on a regular bus without her wheelchair!  Though this is a miracle as last year she was in her chair when she was able to go to school. She's in a regular second grade classroom with another great teacher. For the most part he would not be able to pick her out as being different at school which is amazing. I think we can attribute the successes to her hard work both in the pool and out of the pool with her support staff.  She was able to strengthen her core which keeps spinal cord steady.

The only complication she has right now is stomach pain. She is on an adult dose of Nexium and is still having problems with acid reflux. She went in for a scope yesterday and it appears she does not have any damage. The doctor will probably double her dose.

Elizabeth is also going to school. Because of her hip injury as well as the POTS being out of control, she must stay in her wheelchair. This means she also can only attend half of the school day. She was able to create a unique schedule meeting most of her needs. She takes advanced math class, social studies and choir. She also eats lunch at school. She will start aquatic therapy in October. The goal is for her to return full time to school by December. But, as we all know if we want to make God laugh, make plans for the future. We will take this one day at a time.

Going to school has lifted her spirits. In the last two years she has massed close to 10 months of school. The fact that she had peace as she wheeled into the middle school for the first time that shows God's grace.

I agree with the old back-to-school commercial, "It's the most wonderful time of the year!"