The bad news is time flies. The good news is you're the pilot.

It has been a very long time since our last update.  Years in fact.

I hope to blog more but I may need to change the name since so much has changed.

Stay tuned.......

“Time flies like an arrow; fruit flies like a banana.” ― Anthony G. Oettinger

I apologize for not updating this blog in so long.  Time has flown by and We have gone through so much since my last post.

We have dealt with many surgeries and bone grafts and a lot of time in the hospital.  I should have used that time to update the blog but I didn't even think of it.

Now, we are dealing with Fibrous Dysplasia which was the reason for the surgeries.

We have a facebok page to keep everyone updated.

An Athletes Journey with Fibrous Dysplasia

I will update you all more soon.

Lisa

How it all began

It was October 10, 2000 when my daughter was born.  As any parent expects....they wait for that first cry.  My baby didn't cry and she was a shade of reddish purple.  We lived in a small town and the hospital did not have a high level NICU.  They nicely said they needed to take her for a few minutes after they had cleared her breath and mouth I did hear her cry.  They came back and told me that she wasn't breathing on her own and she had a lot of fluid in her lungs.  I did get to see her one time before she left.  She was a big baby they said and sometimes that happens.  They told me she had to be transferred to another hospital about 30 mins away.  My husband tried to follow the ambulance to the hospital with the best NICU and the ambulance was flying and he couldn't catch up.  That was pretty scary for him. 

Well, me.....They wouldn't transfer me to the other hospital to be with her.  I had to stay.  They told me I could leave the next day.  The next day, one of the OB's in the practice came to see me.  His wife and I were friendly and pregnant together.  He was just coming back from his leave. Actually it was his first day back.  He said that as a doctor and a friend, he didn't suggest I leave.  Another crushing moment for me. 

When I was finally able to see her, there were all sorts of tubes and lines attached to her. She was surrounded by preemies.  She was the biggest baby there.  We were even there one day when one boy who was a twin stopped breathing.  This was all so scary for us.  There was one baby who no one ever came to see.  It was very sad.  I tried to pump but it was hard and the hospital gave her a bottle before I got there even though I instructed them before I left the hospital not to. 

After five days, she came home.  Everything seemed great except you wouldn't breastfeed.  I was going to pick and choose my battles. 

After 2 weeks, she had a high fever with no explanation.  We went to hospital in our small town.  We should have gone to the one where she was in the NICU.  They really didn't seem to know what to do but admit her and get her fever done.  Her fever went away and there was no explanation for the cause.  On top of it all, I got mastitis.  Within the week she stopped using her left arm.  She was irritable and spit up a lot.  We went to all sorts of dr's and ended back up in the hospital.  They said she had a bone infection.  We were there for a couple weeks on antibiotics suggested by an orthopedist at Miami Children's Hospital.   Eventually they gave us our films and told us there was nothing more they could do for us there and we need to go to Miami.  They got us an appointment so we flew down there.  It was a madhouse. 

After seeing the Dr in Miami, who said it was actually getting better we were assigned home health cares nurses in the morning and night and she was given an IV pump.  She had an IV going all day and night.   On Thanksgiving, the femoral line ripped out of her leg.  We call the Doctor and he prescribes an oral antibiotic.   Still no cause for the bone infection.  She must have gotten a staph infection in the hospital.  Who knows? 

We had to go for follow ups at Miami Childrens Hospital two hours from our home for 2 years.  After that we could see a local orthopedist Dr. Rattey.  Over 11 years and we still see her. 

I had to go back to work as I was the breadwinner at the time.  My husband took the month off to care for her while I went to work. 

We were lucky to find a daycare that was part-time that all the dr's send their kids to.  I cut my hours to part-time.  Every cold, ear infection, etc.... She got it.   All the specialists were over half hour away. 

When I was home, I spent her nap time on the phone with Dr's and hospitals fighting over medical bills.  The NICU hospital didn't take our insurance.  The bill was over $192,000.  I was exhausted.

Things settled down for a bit and eventually we decided we needed to move South to be closer to better hospitals and Doctors.

First Week of HIgh School

Sorry to jump around a lot but it's been a long week and I kind of just need to get it out. 

Well, my daughter was on Hospital Homebound half of the previous school year.  This year we decided to send her to a charter school with a smaller student population.  We thought going to a school with 3,000 students would be overwhelming.

The first week of school:

Monday Orthopedist

Tuesday Wound Care Specialist

Weds - Finally a Break

Thurs - A whole day in the hospital for a bone scan and MRI

Friday - Got Results of test via fax but have no idea what they mean.  

She doesn't have a whole lot of friends since last year she missed half the year so she has become very shy and reserved.  I don't think she evens knows how to act in a social situation.  She was a competitive cheerleader for many years until her medical problems.  Most of her friends are usually from cheer.  

She probably won't ever get to do competitive cheer again.  But school cheer she can probably do.  She says she may not even want to do that.  We keep telling her she has to do something and she says like what or I don't want to do that. 

When she isn't doing homework or at a Dr.  She sits in her room or watches reality tv.  This was once a girl who barely watched TV and was always at a cheer class or practice.  I feel like I have lost the girl she once was.  

She has made a few friends at school but they all do cross country and she has pain just walking.  She missed school Thursday so she feels like they don't include her anymore and they have forgotten about her. 

So, we started on a bit of a high and ended on a low.   At least my son has a great week. 

I know I shouldn't be so involved in her social life but I worry about her so much.  I just want her to be a normal high school student.

  

What is Osteomyelitis?

Osteomyelitis is a bone infection usually caused by staphylococcus bacteria; the hematogenous type most often affects children.  My daughter had her first bone infection before She was a month old. This was October 2000. 

The infection enters the bloodstream from infection of tonsils, middle ear or other site.  Can infect, bone, marrow or joint, causing swelling and inflammation.  It can also can bone abscess.  They have no idea how she got it as an infant.  They believe she got it in the hospital.

Symptoms:
Sever Bone Pain
High Fever
Swelling over infected area, in adjacent joints. 

Treatment:
Antibiotics
Treat promptly; delaying could lead to bone deformity.

Here we go again in 2014.