Clumsy Kristy...

So I was taking care of all the presents and boxes from a fun-filled Christmas day because we were having a party at our house on Friday and Saturday. I was taking the boxes downstairs and slipped down the last 2 stairs catching myself on the handrail...luckily I fell on my butt. I have never fallen during a pregnancy before so I called the nurse...she said with any fall (even on the butt) they like to monitor the baby for at least 4 hours. So my plans were changed from cleaning the house and getting ready for my side to come over to sitting on a hospital bed to get monitored. I thought the baby was okay because she was still moving after the fall. So my dad came to the rescue and picked me and the girls up and dropped me off to the hospital and took the girls out to lunch. I was hooked up to the monitors from 1:30 to about 5:30 in the afternoon and then my parents came to pick me up to go to the party at our house. Steve luckily helped by finishing up the straightening up of the house (you can imagine what it looks like after a kids Christmas). Anyways...the baby is still looking good according to the monitors. Her heartbeat stayed between 130s and 160s and she continued to move....no big contractions. I have to watch myself for any bleeding, cramping or contractions. So far...so good.

Merry Christmas!

I hope everyone had a great Christmas! We are still going at the parties, but tonight will be our last one. Our girls are really enjoying all their presents, but I have to keep reminding them whose birthday it really is. Brooke tells me that Jesus likes cake with sprinkles on top for his birthday....even though I haven't had a chance to make Jesus' favorite cake (according to Brooke) we will... Merry Christmas everyone!

My 1st Day Off...

So I was hoping my first day off (from my job) would go a little better than what it did. Tara has been sick starting Tuesday night and continues...Steve called in yesterday due to it being my last day at work for awhile and it was super busy for me. (Steve's 1st time calling in to Wesco...what a great accomplishment being that he's been there since I've been in high school). I brought Tara to daycare today for a bit because I was supposed to help out with Brooke's preschool Christmas Party. I didn't even get to the party when I had to turn around and go get Tara due to diahhrea issues. I will be calling the doctor tomorrow morning if we are still having issues because she is not keeping any liquids in her little body.

Brooke gave Steve and I a Christmas present that she made at preschool today...something I will keep forever. It was an angel...the body of the angel was Brooke's foot and the wings are Brooke's hands. The angel even has curly brown hair...just like Brooke. She probaly doesn't know how much it means to me, but she enjoyed opening it...even though it was for us.

We went to the ENT today for Tara. He doesn't want to put tubes in her ears quite yet. He wants to see us in a couple of months to see if the fluid resolves. So we will be heading back there on February 10.

Until next posting...

The "L" Word...

Well I heard the "L" word today...."LAYOFF". The company I work for does a lot of work for GM and the plant we ship to is going to be closed the month of January. My last day of work will be this coming Wednesday and then I will be off until they call me back. Hopefully by February 1. It's been hard, too, because Steve's hours were cut as well. I know we are not the only ones going thru this, but it is hard....financially and scary when you have a baby on the way, etc.

I'm hoping the next time I post I have good news...seems like I've been stressing about a lot of things lately. Tomorrow I'm bringing Tara in for some bloodwork. Poor thing getting poked all the time.

We're home

It feels good to be home. We are finally getting settled back into our normal routine, which helps with our girls.

Things I learned about Tara so far...

We started her medication on Thursday. Steve and I got to practice and watch the nurse give the injection. By Friday she had no hives. It was amazing how fast the drug worked. Friday I gave the injection in front of the nurse before we left for home. It was really hard. It still is hard. I'm hoping eventually we will be able to get used to it....this will be an injection every day for the rest of Tara's life.

Tara showed no signs of inflammation in her brain, eyes or ears. She did show some pressure or inflammation in her spine. We are also waiting for some liver results. According to the blood tests, her liver test came back abnormal, so they did an ultrasound. We will need to get her bloodwork done again at the end of this week to test some liver function. She will also need a bunch of bloodwork done in one month.

Tara will need tubes in her ears. She has some fluid in her left ear that is not letting sound go thru to her ear drum (or at least not letting her ear drum vibrate with the sounds). We will be getting with our pediatrician and ENT about this.

As for the baby I am carrying...I have a 50% chance of passing it down to her (if we are passing it down genetically...there is a possiblity the mutation happened at conception). We will know within 48 hours after she is born.

I feel like I'm not remembering everything right now or that I am repeating myself on some things. Forgive me...there was a lot to take in and we are very worn out.

I can't thank everyone enough for all the prayers and support for our family.

Only one day left...

Yesterday was very stressful and emotional for me....

First we had an ENT appointment and they told us that Tara had fluid in her left ear, which is why the tests on the machines keep coming back negative, sounds like she will need tubes in her ears especially if she has another ear infection in the next three months.

We then went to the Day hospital to prepare for the MRI. They tried giving Tara the IV three times and finally said they would give it to her after she was sedated...why couldn't they have done that in the first place?

I went in to the sedation room and helped them put Tara 'to sleep'....but the worst part of it all was I had to walk away. Even though I know she was in good hands, I had to leave my baby while they performed tests by putting dye into her, poking her, taking fluid out of her spine, etc.

I was unable to write on the blog yesterday due to a complication in Tara's sedation. At the end of the sedation her bronchial tube had collapsed or had spasms, which caused the doctors to have to put an airway down her throat. They wanted to keep her overnight at the hospital for observation.

The nurses came and got me when she was waking up. We were able to keep her laying down for a while, but then she wanted to be held. She did get a little cranky and she was very drugged and tired.

I stayed with her while Steve came back to the Inn. It was hard...I got no sleep. Everytime Tara would move, I would have to check on her. The nurses came by every hour or so to ask how things were going, flushing out her IV and checking vitals.

In the morning Tara got her IV line out, which was good. It was really bothering her. She would always lift it up (it was on her hand) and say "ouch". We then had to start another full day of appointments.

We started with X-Rays. Tara did well. She was a little upset that I couldn't stay in the room with her, but Steve did. I got to go behind the glass and watch (because I'm pregnant). She then went to ultrasound. They needed to do an ultrasound on her liver due to her urine results. Tara was awesome she just layed there for the technician...something a 2 year old rarely does. We then were supposed to have a speech appointment, but that got postponed until the morning. Next was Occupational Therapy. Tara liked this appointment. She played with blocks, pegs and got to "color." In the neurcognitive exam, just Tara and I could go in there while I answered a lot of questions about her development, etc (I'm still not sure why they didn't let Steve come in.)

After all of our appointments we went back to the pediatric unit where we learned how to give injections. Our moms and Brooke met us there after spending a day at the zoo (with a fun ride on the Subway..."quite an experience" quoted by our moms). We all learned and Steve and I practiced with a needle on a trial skin pad. The nurse gave the first injection to Tara today and tomorrow I will be giving the injection to Tara with the supervision of the nurse. Tara, of course, doesn't like it...it will be very hard.

We have a full day tomorrow even though it will be our last day and then we will start our travels back home (staying in a hotel tomorrow night). Steve and I will get all the results from all of her tests tomorrow, which I am anxious to hear.

Thank you to everyone who has been keeping little Tara (and us) in your prayers. We appreciate everyone of them.

Fatigue Hits Us...

It's day #2 at NIH and we are tired already. Tara is doing a really good job with everything...she is my little trooper. This morning we had pre-anesthesia where we answered some questions about Tara and signed a consent form for tomorrows sedation. We then went to the physical therapist where Tara got to "play" for her appointment...she really enjoyed it. She got to climb up and down stairs, play with a hula hoop, balls, and 'run' across the room with the PT. The PT thought that Tara did really well and commented on how well Tara "plans" things before she does them, which is rare at her age. She seemed impressed at our base-line appointment. 

Our next appointment was audiology. Tara's left ear isn't working with the machines. They say that it doesn't mean she can't hear out of it, there may be fluid. We will find out tomorrow when we meet with the ENT. Her right ear passed with flying colors. 

We came back to eat lunch with our moms and Brooke and headed back around 1:30pm for the photo shoot. Brooke ended up coming with us...I think she is starting to feel left out or is missing us as we go away so much without her. Anyways...the photo shoot was so fun...Tara was such a ham. She posed and kept saying cheese for the photographer. 

Our next and last appointment for the day was at Dermatology. Tara was super tired and fell asleep on Steve as he walked her to the appointment. The wait for the appointment was about 45 minutes to an hour, which let Tara take a little nap....long for us, but a well-needed nap for Tara.  Brooke did well and she got some attention coming with us. 

We headed for home in hopes to go visit some museums in DC...however, my mom found out that they all close around 5:30pm so we didn't make it and we probaly won't make it at all this week, which is a bummer since we are so close to the awesome city. 

Anyways, my request is for prayers for tomorrow...Tara is going to go thru a lot. Our first stop will be at the ENT and then we will be going to the Pediatric Day Hospital where she will be sedated for the MRI of the brain, eyes, ears and they will be taking some more blood as well. After she wakes up from that she will need to 'try' to stay flat on her back for 2 hours. We then will learn how to do injections. So this will not be a fun day. 

Tara's rash has been really bad this week, which is good for the doctors to see. I asked that we get copies of the pictures that were taken today because I'm hoping that in a couple of days we will never see it again. I heard this drug, Anakinra, is 'awesome and unbelievable' from the dermatologist. As much as I hate to poke my little girl everyday I have to keep in mind that it will make her healthy. Please pray for strength for me and Steve as we learn how to do this....

Until tomorrow...

Patient of the Year!

Tara did so well today. We were at the hospital from 8am this morning until about 2:45pm non-stop. Admissions were busy this morning and we had to wait about 40 minutes to be admitted. Our next stop was the labs. That was hard for Tara and me. Luckily they got her in the first poke...but it still seemed forever.

After labs we went to the Pediatric Clinic where we met a nurse practioner who went over the protocal, our family histories and Tara's life story as well as physical exam. Tara did very well and the nurse was very impressed.

We then went to have a rounding with the NOMID team, which consists of 5 people including doctors and nurses. We told our histories again and Tara's life story. Some things that we learned were that the doctors here see about 40 NOMID patients (Muckle-Wells being part of NOMID) and the youngest is about 6 months old. Tara is on the least serious side compared to those patients. They told Steve and I that we could get tested as well to see who the carrier is...if one of us is actually a carrier. There is a slight chance that this mutation could have happened at conception. If one of us is the carrier the chances of us having another child with the disease is 50%. Tara's chances of passing it down is 50% as well. Steve and I are opting out of this test. We don't think we will blame each other for it, but we would blame ourselves if we were the carrier and medically it doesn't make a difference. We also learned that the doctors here are finding a pattern of the patients with hearing loss and they will know after the MRI on Wednesday if she has part of this pattern. So they may be able to tell if she will eventually lose her hearing (I pray that she doesn't).

Next we went to a doctor in rehabilitation who measured Tara's limbs, he checked to see how flexible Tara was and asked about when she started her gross motor, fine motor and speaking skills. It was very hard for me to remember when she started everything and she is not even 2 years old yet. She cooperated very well and the doctor told us that he wished all the patients were as cooperative as Tara.

I say that Tara wins "patient of the year"...she did so well. We have 4 more days to go. Tomorrow doesn't look to be too bad...Wednesday is the day when she gets sedated and has the MRI.

Thanks again for your support and prayers. I hope everyone is doing well in Michigan. My brother called us and said you received some snow. The weather here is mid-40ish and no snow.

Keep safe...

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...