We're Here!

After a very long trip we made it! All we saw today besides the mountains of Pennsylvania were brake lights. We think that the whole world was traveling on I-70 and I-76. Anyways....as I type this my girls are up in the play room with Steve and my mom and mother-in-law burning of some well-stored energy. I can't tell you how well my girls did. We didn't even get a "Are we there yet?" until we got into Ohio yesterday. But needless to say they did very well.

When we entered the Campus are car was searched, which is procedure. We almost had my own mom wondering about us when the dog sat down next to the drivers door. Apparently the search team planted something in our car to make sure the dogs were aware of what they were looking for. Of course, they got a treat once it found it.

The volunteers here at The Children's Inn are wonderful. They are very helpful and gave us a nice tour of the facility. The girls already got a special present for arriving and they will get something special everyday in their own mailbox.

Everything so far is turning out to be okay, but I can't tell you how nervous I am for this week...I know my dad keeps telling me not to stress out. However, I know that if any of you were in my shoes handing your daughter over to a medial "research" team, you may wonder what is in store...which is what I'm wondering. I know that she will be in good hands, but this will be a rough week.

Tomorrow morning she will not be able to eat breakfast because we have admissions at 8am and labs at 9am followed by other appointments that will bring us into the early afternoon.

I'm not worried about Brooke at all there is tons of stuff for here to do including games, arts and crafts, playroom, etc. She will probaly wear out my mom and mother-in-law.

All I can ask for is prayers for Tara.....thank you for each and every prayer.

Getting ready...

It's about 11pm on Friday night...no, I'm not all the way packed for this trip to NIH, but I started! We will be taking off tomorrow when Steve comes home from work. I pray for safe travel for us and that the kids will be able to handle the long trip. We are going to break up the trip a bit by stopping at a hotel, hopefully one with a pool for the girls to play in and burn off some energy.

A BIG thank you to my CROSS Group who blessed us with goody bags for the girls and some other necessities for our trip...I can't thank you guys enough...it really means a lot to me.

I would like to thank everyone who has supported our family with prayer and continuing support as we venture this journey with Tara.

With Thanksgiving...

There are many things that I am thankful for...too many to mention, but a few that I would like to share...

I'm thankful for having an Awesome God. Without Him I have no strength. I thank Him for all the blessings that He has given me...

• My husband, Steve. I love him more than anything and couldn't imagine life without him.
• My daughter, Brooke. What a fun-loving, dancing, smiling, happy little girl. She is growing fast, I'm trying to take it all in while I can.
• My daughter, Tara. She is such a little blessing. She is so cuddly and always has a little smirk. She, too, is growing fast...I wish time would slow down.
• This baby that is growing inside of me. I'm starting to know her more and more everyday with her kicks and tumbles. I love her so much already.
• My parents, Steve's parents. We are so blessed to have great parents. They are full of love and are always willing to help out where they can.
• My brother, Matt (and his girlfriend Anna), Steve's sisters and their husbands (Chris & Lisa and Shawn & Kim)....and I won't forget all of our nieces...we are really good at having girls in the family...yet they are all so special in their own way.
• Grandparents, aunts, uncles, cousins....all the family that I would like to see more often.
• My Church and church friends...
• My home...(built and filled with love)
• My job, Steve's job....my girls daycare

The list could go on and on....but if you are reading this...thank you...for your friendship and caring for our family.

With love and thanksgiving....Kristy

We have an appointment...

I received a call today from NIH and we have an appointment December 1-5! That's only a few weeks away! Once Steve gets home from hunting we will have to sort out all the details like if we are going to drive or fly, if we are going to bring Brooke, etc.

I got a call!

I received a call from the NIH yesterday afternoon. The nurse was unable to answer a lot of my questions just because she hasn't seen any of Tara's charts/paperwork yet. So that was my mission. I had to call the pediatrician's office as well as the Detroit office and get some reports sent over to NIH. She's hoping to get them and contact me next week after she talks to a pediatric nurse. At least we are in the process...

Still Waiting....

I'm still waiting for a call from a nurse at NIH (National Institute of Health) (I was supposed to get a call Friday or Monday). I called a left a message this morning...hoping someone calls me. I know- I'm anxious and inpatient. I really want to go down to Maryland before this baby is born, I think it would be so much easier. Anyways, I will keep everyone posted once I hear something.

The life of Tara Kay...

My daughter, Tara, was born on February 3, 2007. Within 12 hours of being born she broke out in a rash. She was treated with antibiotics but no one new what was wrong. Her white blood count was very elevated and has been since she was born. Around 3 months of age her rash (hives) looked even worse...I brought her to our pediatrician who referred her to an allergist. Tara was seen, but they couldn't do the 'poke' test until she was 6 months old. Once she was 6 months, they did the test and she tested positive to being allergic to coconut, dogs/cats and dustmites. We did everything we could...changed formulas, bought dustmite covers for her bed, took away all her stuffed animals, put her on medication, etc, etc. The medication didn't work. We started thinking we were going to have to switch daycares (our daycare owns 2 dogs). I stayed home with Tara for about a week and a half. That didn't help reduce her rash at all. The allergist was frustrated. She sent Tara to a Rheaumatologist thinking that the high inflammation in her body was juvenile arthritis. We went to the Rheaumatologist in Grand Rapids and he looked at Tara, bent all of her joints, over bent a lot of them and she didn't squirm or show any discomfort. He referred us to a dermatologist. We went to a local dermatologist in Muskegon and he diagnosed her with chronic hives. He told us there would be no use in a skin biopsy because her hives change places every other day. We were losing hope...everyone was starting to tell us that this would be something she would outgrow...that was encouraging.

Tara's pediatrician was still not happy about the high inflammation (SED) rate inside Tara's little body...said it was not normal and not healthy for her to live life like this (even though she seems to be a content little kiddo)... He started thinking that her immune system was fighting itself....so he decided to send us to a pediatric immunologist. We found one at the Children's Hospital of Michigan that our insurance would cover. We made our way over to Detroit and met with Dr. Secord who pretty much said that we 'stumped' her...not the answer I was hoping for. She did a bunch of lab work (whats new Tara's been poked and prodded since she was born). Later on in the week she called me and said that she would like us to come back to meet with her and the rheaumatologist, Dr. Adams. So we went back to Detroit, met with both of them and you guessed it...more pokes and more lab work. They also sent us to get a biopsy of Tara's skin and to see a pediatric opthamologist (which would see if some veins in her eyes were inflammed).

I know this story is long, but now we are up to October 3, 2008. A day that I was driving me and some of my friends to a conference in Grand Rapids, MI. I get a call from Dr. Adams. Said he had a diagnosis for Tara. Apparently he did some tests on genes in her body. She tested positive for Muckle-Wells Syndrome. This is part of the CAPS disease. There are 3 tiers to the disease...very serious (NOMID), serious (Muckle-Wells Syndrome) and less serious (Famialial Cold?). He told me that the reactions were her rash, high inflammation in her body, sore joints, fevers and she would lose her hearing by the time she was adolescent. What a shock to my system...all these doctors were starting to say to me that this could be something she could outgrow and now I learn that she has a disease that she will live with the rest of her life...it wouldn't get any better or worse (except her hearing).

Luckily, there is a medication for this disease, something new called Anakinra. They are not sure of the long-term affects. The bad part...it is an injection daily for the rest of her life.

We had to do a couple of things before getting her started on treatment. We had to get a TB test and get some accelerated vaccinations (once she is on this medication she is not able to get them anymore). We also had to get a baseline hearing test done. Tara passed her test overall, however her left ear had negative pressure (she was just getting over an ear infection) and the machine said that ear failed.

Steve, Tara and I just went back to Detroit this past Thursday to meet with Dr. Adams (the one that diagnosed Tara). There was a miscommunication between him and my pediatrician, though...he thought that we had already started the injections, but we haven't. He referred us to the National Institute of Health (or at least gave us the number to it- its a self-referral program) and gave us a enrollment form for Children's Special Healthcare. This medication is not covered by my insurance (as far as I know..I have a call into them, but it wasn't listed on their website) and the cost is about $10,000 per year.

On the way home from our appointment I called the NIH and left a message for Karyl Barons to call me. Dr. Adams from Detroit had contacted her and told her about Tara over email messages. Later on Thursday afternoon, Dr. Barons called me and is very interested in meeting Tara, especially before she starts the Anakinra. So we are hoping to get in soon (especially before February when I'm due). She told me that Tara would be available for a study. She would have to come in every 6 months to do this. She is thinking this appoinment would be 2-3 days long. One part of the appointment would be sedating Tara and doing an MRI of her bones in her ear, along with giving her another hearing test. Dr. Barons told me that a nurse would call me Friday (yesterday) or Monday...hopefully she will call me Monday so we can get the ball rolling, I haven't heard from her yet.

So thats where we are...I may have got a couple things out of order or may have missed some things. What is important is that I have a happy little girl with a very rare disease that I'm hoping we can treat soon so she can live happily ever after like the little princess she deserves to be. We love Tara very much and thank God for her!

To keep everyone posted....

I decided to create a blog to keep everyone posted on what is going on in the lives of my girls and Steve and I. Sometimes it is hard to get ahold of everyone, especially with everything that is going on with Tara (see next blog for Tara's life story). We'll see how it goes...