Catching Up

More like trying to catch up! I am so far behind on my blogging, posting, visiting it is embarrassing...............and somewhat stressful. I have been busy! I am still dealing (struggling) with clearing out what will be Cali's room. I found an organization that accepts donations of children's items and housewares for single mothers who need help so I have been going crazy. I think we now have a truckload to give them. Seriously. The woman is picking the stuff up on Monday. The room will then be ready for paint. Woohoo!!
I finished listing items on my Etsy store for now. You should see the beautiful earrings on there! My sister has many talents...............of which I am envious.
This past Monday we took Bella to a pediatric Rheumotologist. After making the appointment with this doctor over a month ago I kept wondering.............why does his name sound familiar?? Monday when we met him I thought................why does he look so familiar? About half way through our appointment I found out. For months and months I have been researching online and reading article after article on the FAPA Syndrome, cyclic fever, periodic fever, fever of unknown origin, etc. The doctor that originally headed up this research back in the 80's has a Fever clinic in Washington at the NIH- National Institute of Health. It is one of only two fever clinics in the entire United States. They specialize in kids that have periodic fevers like Bella and there is an 18 month waiting list to get an appointment there. I tried last year but there is also a list of criteria you have to meet. We hadn't been to enough specialists at that time. Anyway!!!! In talking to the rheumotologist (Dr H) I started quoting something from a study that I read months ago in order to question him on something he had just said. Dr. H not only finished the sentence but the next two paragraphs! I looked at him perplexed and he said "I wrote that. Where did you read it? WebMD?" And with probably the most stunned look on my face I replied-"Ummm, yeah. That and the multitude of studies done by Dr. Daniel Katsner.............." Again he cut me off "That's my mentor." I about fell out of my chair! He proceeded to tell Marc and I that he flys out to Washington once a month to work with Dr. Kastner in the Fever Clinic at the NIH, hold seminars, do research, studies, etc. and that he is probably there more than he is here. In fact, several of the articles I had read were written by this man. I might as well have been in the room with my favorite celebrity!!!!!!!!!!!!! Actually, to me, he was a celebrity. Marc and I looked at each other and started giggling like we just woke up to a puppy on Christmas morning. We felt like we had finally arrived..... we were in the presence of someone we know will find the answers we have been looking for for so long!!!!!!! And the angels sang!
Dr. H ended up spending and hour and a half with us. We discussed Bella's entire fever history, showed him calenders, journals, family medical history, her chart from the pediatrician, answered lots of questions and came up with a plan.
Dr. H was concerned with Bella's hearing and communication skills as we have been. He wants her to go back to her Ear, Nose and Throat specialist for an in-depth hearing test. IF they find hearing loss Dr. H will test her for Muckle Wells Syndrome. Also, for diagnostic purposes, we will administer a dose of Prednisone at the beginning of her next fever. If the Prednisone aborts the fever we know it is FAPA and what further tests need to be done. She goes back to her ENT on November 25th. So now we wait.
After we were done with the Dr we took Bella to the cafe and got her a snack before heading home. I think she enjoyed the alone time and 100% attention from mommy and daddy! What she didn't enjoy was biting into that bitter blueberry in her muffin!

So we moved onto chips! Yum! Much better........

And then we enjoyed some time in the Skywalk......................

Bella was fascinated that the cars and trucks were going under us and she could see them as they disappeared from one side and appeared on the other side!

Look Mommy Daddy! WOW!!

After a long day at the doctor's we headed home....................and Bella fell fast asleep.........

Some exciting news! Cali learned two new things this week. She has been working so hard to get that thumb in her mouth..............

And then Monday night she got it!!

Marc and I were so proud of her! And I think we must have snapped 50 pictures.

Then last night she decided to be more independent..................

And hold her own bottle!!! Marc and I were rolling! It was too fun to watch! Again, another 50 pictures. I am still nursing Cali but she gets one bottle at night to fill her belly so that she sleeps through the night. Funny thing was, she knew she was cool. She would suck on the bottle and then stop to look at us and laugh!

Those little hands...............................doing big things. She loves to stand with help from Daddy.

And is now sitting up with support. She doesn't even slump forward, but not quite able to do it on her own. I'm not ready for her to be doing that yet! Why can't they just stay babies longer?

Oh Bubbles................slow down and let mommy enjoy you.

Have a great weekend everybody! Stop by Tuesday..................and tell all of your friends..............
It's gonna be goooooooooood!!!!!!!!!!!

~Heather:)