Some Things On My Mind

On Saturday, May 16th, my sister, brother, sister-in-law and her sister participated in the Komen Race for the Cure. They were Heroes For Hope. I am super super proud of them and a little jealous that I couldn't be there.


My sister, of course, took her camera and got some amazing shots. It is overwhelming that they had the opportunity to participate in something so much bigger than themselves. Great job you guys!! You can read more about their adventure here. Melanie is new to blogland so go say hi!


I saw this t-shirt online the other day. I laugh out loud every time I look at it. I think I am going to have to order one.

Perfectly appropriate for how I have been feeling recently.

I have been puppy shopping. My husband says we have to wait until we have a house before we get a dog so it is going to be a long long time. I have been researching online for almost two years for the perfect breed for our family. We want a smaller dog that is good with kids and oh-so snugly.

We have narrowed it down to two:

The Cavalier King Charles Spaniel

And the Papillon

The Papillon is probably at the top of the list. The Cavalier has genetic health problems that you have to be extra aware of. From what I have read it can lead to much more expensive vet bills and a shortened life span. When I was younger we had a CKC spaniel named Peaches. She came to us as a stray and was absolutely precious. My Grandpa used to have a Papillon and it was the sweetest dog. I love the ears. They look like a hairy elephant. Both of them are in the spaniel line. Hmmm..guess I have found my breed. I can not wait to have a house. Getting a dog is just one more thing to look forward to. he kids want a pet so much. Maybe it's good we can't get one yet. By the time we actually get one the kids will be older and more responsible to help take care of the newest family member.

The other night I was opening mail and read a letter that made my heart sink. It came from Bella's Rheumatologist. It started like this:

"It is with mixed emotions that I must announce my relocation back to Israel in September 2009......"

I had to sit down. I read it over and over. What?!?! NO! That's not fair. He can't do that! We just started getting somewhere because of him! Two years of searching and he was the one that gave us the diagnosis! He laid out a plan. He has to stay and finish what he started. Right? This man knows PFAPA- he mentors with the founder of the Fever Clinic in Washington. He travels the world for study cases. He GETS IT and believes in it when most others don't. Mostly, he knows my daughter. He has studied her and memorized the hundreds of pages of notes that I had documented over our two year search for answers. I trust him. Bella trusts him.

I suddenly felt alone. Frustrated. Feeling like all of the road blocks and mazes that we have maneuvered around for the last two years were now stacking up in front of me like the Great Wall of China. It is still heavy on my mind but I have been praying about it. God certainly hasn't brought us this far just to make us turn around and go back right? We can squeeze one more visit it with the Rheumatologist before he leaves in September. Meet his partner and feel him out. Tell him what our expectations are and see where he stands.

Here is a brief overview of Bella's condition:

Definition:

PFAPA (medical condition): A very rare syndrome characterized mainly by mouth ulcers, periodic fevers, pharyngeal inflammation and infection of neck lymph nodes.

Description:

Fevers. They're as common in young children as scraped knees and runny noses. But some children have fevers that occur routinely each month like a woman's monthly period. A description of the syndrome, known as Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA) is a chronic condition usually seen in children under five, characterized by periodic episodes of high fever occurring roughly every four weeks. The fever rapidly rises to 103-106 degrees and lasts three to six days.

The child is healthy otherwise - no runny nose or respiratory symptoms. The syndrome may be accompanied by mouth sores, a red and inflamed throat, and swollen glands. The fever spontaneously resolves.

Dr. Kathryn M. Edwards, professor of Pediatrics first described PFAPA with Dr. Alexander R. Lawton, professor of Pediatrics and Dr. Gary Marshall Jr. from the University of Louisville.

Fevers may persist for several years but seems to have no detrimental long-term health consequences. Many physicians are unaware of the syndrome.Nothing can cure PFAPA but a small dose of prednisone has shown promise in alleviating the symptoms in some children. However, in some children it has been shown to increase the frequency of the episodes - from 28 days to 14-21 days. It's very difficult to have a child who is sick every month like our children are. When it hits they are run down, lethargic and fatigued.

Description excerpt taken from Yahoo Groups

Bella had another fever early this week. It was the highest we have seen for a few months. I knew it was coming for three days and I still wasn't prepared as I watched the thermometer rise past 106 degrees. We gave her her prednisone and she went to sleep. Her eyes water like she is crying buckets when her temperature gets that high. I cried with Bella. I cried as I watched her sleep, listening to her labored breathing. We are very blessed that the diagnosis was what it was and nothing more. There are many families out there that would gladly trade their child's diagnosis for ours. But it still hurts. It's still hard to watch. Especially when the diagnosis still doesn't answer all of the "whys?" Then again, a diagnosis never does, does it?

Plans for this weekend include.................hmmm...............flyin' by the seat of our pants! Hopefully it will be nice and relaxing.

I hope you all have a fantastic weekend and remember the reason that we are celebrating.

God Bless those who have fallen and those who are currently fighting for our freedoms- at home and abroad. We thank YOU! Happy Memorial Day everyone! Have a safe and happy holiday.

~Heather:)