More BLOOD

I have been putting this off WAY too much. I have tried to figure out why exactly but who knows. She needed MORE blood work. This time one of the tests is to determine if she has Lupus. (Maybe I didn't really want to know). As usual we dabbed the numbing cream on her arms before we go in, but something was different. There were 2 other children getting their blood taken before us and Keira heard them scream and said, "I don't scream like that I am brave." Granted without the cream she probably would scream just as loud, and usually she does whimper and cry a bit. However this time she didn't even cry, whimper or squirm AT ALL. He stuck her with the needle and she just HAD to watch. But he couldn't get the vein so he proceeds to poke and dig around to find the vein... It grossed me OUT. So I calmly tell him,"You better find that vein because I am getting pretty disgusted at all this poking around and I just might puke!!" With that he asked for back up and the second attendant found it right away. I think she was also very brave because her Grandma was waiting in the lobby and Keira had told her that she didn't scream.

Now we wait for results.....

POOP

Friday was LONG... our two hour appointment with the Hematologist went well. But more of the same. Two specialists came in and they reviewed every shread of lab work, CT reports and Dr. notes that they could find. They determined that at this point her low iron was just slightly abnormal and we should be fine (on the blood side of it all), but to make sure lets run some more of the same blood work to compare with the samples taken when she was really sick and see if there are any changes. As well run some of the blood work the Reumatologist would like. One of the tests is specifically for Lupus. So for sure we will know if she has it or not. Why didn't i know about this test!? And why are we just NOW doing it!? I could cry and scream all at the same time!

So this means ... more blood work... he really wanted us to go next door and get it done right away. We didn't have the numbing cream so it was OUT of the question, plus she had already endured one poking session already this week. I try to limit it to one poking session a week. I mean lets try to get it all done at the same time people!!

Monday we had to take Grant to the Dr. He has bronchitis. While there Keira tells me, "Mom this is SO FUN!" I am like are you kidding me I would rather puke then be here! "Why is that honey?" I question her. She responds,"Because it is for Grant and I don't have to get poked!"

I am pleased to report... that ALL 17 poop samples are officially DONE. I was even proud of my little self in that I did all but 5 of the samples. Thankfully my stomach isn't as sensitive as it was a few weeks ago. I was able to buck up and do it.

CT

Tuesday early in the morning we went in for the CT scan. Originally they had wanted to have her under anesthesia for the test. But upon further questioning we found out the test involved her holding still for 45 seconds and that was it. We opted to for go the anesthesia and talk her through it. The technician that worked with her was GREAT. They laid her on the table wrapped her from her chest to her ankles (like a mermaid). Then the icky part. They decided that they wanted to do one picture with contrast dye in the veins. That meant she needed to have a line put in. After the hospital incident in December, ( where she was poked 9 times and Ben, sweet Ben, threw them all out and told them to get the numbing cream and wait the 45 minutes.), she HATES needles. Even if we have the numbing cream it still evokes quite a bit of anxiety. She did fine. I had to step out, being pregnant, and Ben got to hold her hand and walk her through the exam.

Later that day we got a CRAZY incomplete message from the GI Dr. saying that it was apparent she has some bacteria or infection in her Left Kidney and we then needed to get a hold of her pediatrician to get a UTI test and more urine testing. But in addition she wasn't eliminating all of her bowl and she was still quite backed up. So the plan that we were on wasn't working and we would have to come up with another plan. Oh then he ended by saying.... If you have any questions give me a call at...... (which goes to a fax line!!) Got to love EM! Grrr.

Thankfully I was able to convince my pediatrician to let us go to the lab here locally and do the sample there. Wednesday is my babysitting day in which I have 2 more small children to add to the collection... so imagine the sight of 2 one year olds in the double stroller and keira 3 and a half and another little guy of all most 3. As we walked in the lab we drew all sorts of attention. I actually saw jaws dropping. Instead of explaining I just claimed them all as my own. I get so much more entertainment by doing such and I would claim these little guys any day. So if anyone has tried to get a urine sample from a 3 year-old you know it is challenging. Well instead of the pee squirting out it trickled down so I couldn't find a good stream... needless to say I couldn't catch enough pee and we had to wait another 45 minutes for Keira to have to pee again!! It actually was quite hilarious. Keira's response was, "Mom you shouldn't have moved the cup around and you could have gotten more pee." The kids did remarkably well entertaining themselves in the lower lobby just killing time. The second attempt was more successful and we were then able to go home.

So now we wait.....
Tomorrow we go see the Hematologist... I swear we have seen so many specialists and still don't have a definite answer!!!

GI

I really wanted the GI Dr. to magically tell us, "This is what it is and this is what we are going to do." Instead we came out with a "POOP PLAN." It is a list of 6 steps we need to follow before we return to him in 6 weeks. Basically we are working towards her having "soft, painless, pasty, daily poops" He said this about 8 times! In addition we have 12 stool samples to get and a CT scan of her abdomen. So ladies here is the ticket. Make the deal with your husbands that you deal with throw up (they are weak and can't handle it) and if ever they will handle poop. It is so worth it! Ben has been the one to police and gather the poop. He truly has been a saint during all of this.

So I know many people are skeptical about supplements but I am a firm believer. Through much research I found a theory that autoimmune diseases are linked to oxidative stress. So one idea is to give the body a high dose of antioxidants. We have been doing this since the Thursday we got some idea of what this might be. Let me tell you she is a different kid! She spent most of the day on the couch with a total of 1 to 2 hours of quiet play on the floor in between high fevers. Now she is up and almost back to her bouncy little self. She maintains a slight pale tone and not as much energy as before but AMAZING difference. Also another MIRACLE she has officially gone 35 hours since her last dose of Motrin.

We have 2 more specialist to go see. They have determined that our case isn't as high priority as some others so we can't get a quick appointment. The reumatologist is scheduled for end of JULY! And the hematologist is scheduled for end of MAY!. So now I see what the Lord meant when I received the answer to "...hold on!" So here we are in a holding pattern thankful for the little miracles that are sprinkled in our daily lives.

Blessings

I want to thank everyone for their well wishes and prayers. They are deffinately felt. We are so blessed with amazing thoughtful friends. One of which was so right there exactly when I needed her. Keira needed someone to hang out with and so did I. And the FOOD was GREAT. I was so craving mexican food.

Know that the last post was cut short and that will happen from time to time as duty calls.
What I feel was left out was this...through it all we have been so encompassed by the love of our Heavenly Father. During the really hard moments when my body aches and my emotions are at the surface and I just can't fathom how I can keep going I actually feel the Lord carrying me through the tears and helping get the difficult things done. It is such an amazing humbling feeling.
We had a huge blessing yesterday! We have been waiting to see a Gastrointestinal Dr. and they called us to set up an appointment for Wednesday. Specialists are so hard to get into they usually take forever!!! Now just to get insurance approval before tomorrow! ugg.

I feel like Keira's intestinal tract has just shut down. She has been having a REALLY hard time eating solids and we pray for poop. Something I never thought we would pray for! I am astonished at how much miralax and other laxatives she has ingested with out anything. IT is amazing. I know I would have the super squirts by now! That was probably to much information! But SO TRUE!

Olson News

Here is a blog that I thought I was going to do after Keira was born. As you can see it just wasn't my thing. Having recent events change drastically in our lives I feel this will be a good way to write the updates so loved ones can look and read and know what is going on. We have various friends and loved ones all over and trying to remember who we have kept in the loop and who wasn't told the latest news is really hard. We love to talk to you and want each of you to know what is going on but we need some sanity in it all. PLEASE don't think that because we are doing this we don't want to hear from you. Quite the contrary we need our loved ones with us.

From the begining...
Keira first got sick in December ran a fever for 10 days during which we had her addmitted to the hospital. To top it all off she spent Christmas eve and most of Christmas day in the hospital. Not exactly where you want to be during that time. All they found was anemia (low iron) and high inflammation. Both typical signs when someone has been fighting something. No real news.

March 26th she started with a high fever again. We went to the Dr. on the 3rd day. Then again on the 5th day. A course of antibiotics were given. Nothing significant changed. On the 8th day of being on the antibiotics her fever came down. We had 4 days fever free then about a week of straight fever. Then 3 days off. I had broken a tooth and Keira needed a filling. So we went to our dentist in Utah. The second day of being there her fever came back and we have been fighting it ever since. That is at least 2 weeks of fevers. While in Utah I just couldn't take the pull to my heart any longer and called her doctor and sobbed I told her I couldn't take it any longer and the sit and wait for authorization to see a specialist wasn't working. She took it upon herself to make some calls and that Saturday we went in to see Dr. Gibbs an Immunologist/ Allergist. During our 2 hour visit he was able to observe her go through her cycle. Starting at 98.0 being somewhat perky happy lively little girl to extremely OUT OF IT crashed on his exam table with a fever of 103.5 We left Monday moring to get all the lab and x-rays done. It took from 8 until 2 in the afternoon to get it all done. One thing after another came up!
During this time Keira was AMAZING, never complaining and ALWAYS so brave!

Last Thursday we had a conference call with Dr. Gibbs my husband and myself. During which we were told her ANA levels were high 1.6 normal is 1.2 to 1.4 And antother test showed she had high levels of inflammation in her body. This test in the hospital was 10 now it was 12. Unlike most doctors who are aftaid to say anyting unless they KNOW for sure he gave us his thoughts and said he wasn't a specialist but would refer us to 2 different ones to confirm. His thoughts were Lupus and Crons Disease. A lot of tears and internet seaching has occured since then. Oh my sweet baby my heart is so broken. I know I have to show her my strong happy confident self but I am so scared. Our nights since this has all began has parralleled that of bringing home a newborn. We are up every 2-3 hours to check her fever. Even with Motrin she will spike out of no where. That is what happened last night at it got to its highest yet 105.4. SUPER SCAREY.