Fever- Finished - Doctor Appt.

Brooke has had "something" going on since Friday. High fever and a sore throat. The fever broke yesterday morning (thank goodness) and the throat seems to be a little less sore. Fever spiked again in the middle of the night, which is typical with Brooke. Once the tylenol kicked in at about 3:30 AM, she got silly. Very silly! She was making us sing to her and she giving us zurburts. Then she called granddad a bug and told him to "come over." We've had this conversation before. We talked about Heaven for a bit and I went through the list of people who are in Heaven with granddad, she smiled - thought for a minute and then said "come over" again. Hmmmmm. Glad that was the end of that one! She then proceeded to ask me to call Ma and Nanny to tell them she had fever. She likes sympathy from the family when she doesn't feel well. Who doesn't! I think it was 4:30 or 5:00 AM before we finally all dozed off. These nights where we're up with her are killers!!I'm praying the fever is gone for good and that we can ALL get a full night's sleep tonight!

Stimulus project - DONE. The application for round 2 was Sent Friday evening. YEA!!! There is no round 3, which is good because if there were...I might have to quit my job! Both rounds of the stimulus project have been the most exhausting projects I have ever worked on. You should see my desk. Ugh. I really should've gone out today to try to muddle through some of it before tomorrow but I just couldn't make myself go. I needed the time away. Now I have to face it in the morning. All of my daily work has been on hold for 2 weeks now, so you can only imagine what has piled up. GIVE ME STRENGTH! Possible jury duty Tuesday (last time...my 4 months will be up 3-31!!), gone Wednesday...going to be a crazy week.

Brooke has an appointment in Albq. on Wednesday with her Immunologist (UNM). He wants to evaluate her and run some additional blood tests. He hasn't seen these spots she has and since he is an allergist - who better to evaluate her? This appointment will start the process of Brooke being referred elsewhere for a second opinion. Looks like Baylor in Houston. There are no adult Immunologists in New Mexico, and the team at Baylor evaluates patients and gives treatment options to the treating physician. Surely can't hurt to have someone other than UNM look at her. I just hate the thought of putting her through a bunch of testing! But we need to know why the IgM is so high and what we can do about it. Surely there is SOMETHING that can be done to help fix the blood problems she's had since the Salmonella?

Please pray for guidance as usual for Mike and I. It's a guessing game a lot of the time. Pray for strength as we care for Brooke. Pray for healing for Brooke. An answer would be nice. Pray for compassion and knowledge in everyone we come in contact with. Bless you all!

Spring and Spots and Stimulus and Stress

Spring, where are you? Snow snow go away don't come back until another day (a long time from now)! I'm ready for some warm weather!! And not wind or hail or tornadoes!!!

We're on hold with Brooke...waiting to hear back from the Immunologist in Albq. He wants to see her (and the spots). He is the best person to evaluate the spots since he's an Allergist/Immunologist. The spots are crazy. Brooke has several going on right now, but one on her belly is the one we're watching the closest. It's angry looking and sore to the touch, but it's got a head on it so I think it's trying to heal. I took a picture of it this morning so I could show the doctor how it looks right now and by this evening, there were two more "new" spots around the same location. You know, when you're blood is messed up how can anything else work right? That seems to be the case since the salmonella. Different blood issues bring on different side effects. Remember when her hair was falling out last winter? Her protein count was low. Well IgM is a blood protein. The onset of more spots seems to coincide with the increase of her IgM issue, or so it seems. We're never sure what to do? Lately, we've been doing nothing for them and they eventually go away (slower than they should due to the Neutropenia), but eventually they are gone. None of the creams seem to help. Now poor Brookie has a "blemish" on her face in the exact same location as the one I'm currently sporting. How funny is that? Like mother like daughter?? Mike refers to mine as "the volcano." Not nice. Not nice at all!!! You see what I have to put up with?? Ha. (I do love my silly man...he makes me laugh.)

A team of us at work have been working on round 2 of the Broadband Stimulus project for the past two weeks and I can still say (after going through the round 1 process) - IT AIN'T MUCH FUN! I've been putting in a lot of extra hours and finally seem to be seeing some light at the end of the tunnel. Hopefully it's not THE light at the end of THE tunnel. Ha. Our deadline for submittal is Friday and if we're not all dead by then...we may actually sigh a bit of relief to see it done. Or we may be too tired to care? Dealing with the Federal Government and their money is challenging, to say the least. See how nice I'm being!!! Hopefully all of the hard work will pay off. You think my stress level has been high...my boss was out two days this week with the stomach bug. Nothing like feeling like you've been hit by a concrete truck and worrying about everything you should be doing at work knowing the responsibility for this beastly project is sitting on your shoulders. Poor guy! I felt so bad for him. BTW...I was diagnosed as having high blood pressure yesterday. Can't imagine why? I'm going to try the ol Beta-blocker and see how it works. I'd like to attribute this problem to stress and leave the age thing out of it if you'll let me! Please just humor me on this one and agree that it's stress! I have some you know. Just a little. :)

Have a great evening!! Thanks for the continued prayers.

Not sure what to think?

We saw our Hematologist in Albq. yesterday and honestly...I'm not quiet sure what to make of the appointment? He didn't see anything in her bloodwork that perked up his ears. He said the slightly elevated liver levels weren't anything he would be concerned over and the specialized protein test that our Immunologist ordered (that came back normal) was the one test he would've done had it not already been done. It basically showed that Brooke makes proteins in her blood, which is a good thing. He did a thorough check of her lympth nodes and looked at the spots she has on various parts of her body. He told us since she isn't sick or having recurring infections he didn't see anything that alarmed him, so he didn't feel the need to do anything. He told us to see him as needed. I guess the frustrating thing is that he didn't seem to understand why we were there, so it was obvious he didn't receive the information I faxed him earlier in the week. He had to ask us if we had determined last year that her spleen was enlarged. SERIOUSLY? What happened to reading up on the patient PRIOR to walking in to examine them?

OK, so now what? Is it normal for a blood level to be going out the roof and nothing actually be wrong? I understand it being puzzling to specialists that she not be sick or have recurring infections, but shouldn't all of these puzzle pieces start adding up to something? I'm stunned. I called our Immunologist yesterday and left word for him to call me. I guess the ball is back in his court.

I'm praying for guidance; for direction. I'm asking God to help me figure out the next steps. Please pray with me.

Birthday Fun - Time for tests - Radio?

Can you believe my baby girl turned 20 yesterday? Where does time go? We had a birthday party with family on Sunday afternoon, took her to Leal's Monday night so they could sing to her, and Mike took her to Rib Crib last night. (Rib Crib is a father-daughter outing that usually occurs on Tuesdays when I'm at school. I don't like Rib Crib.) Brooke had a good time with all of the celebrations taking place! And I'm sure we'll be due for "another birthday party" in a month or so.

Tomorrow is Brooke's doctor's appointment in Albq. Please pray for us as we travel to Edgewood tonight (to the Hankins Hotel - ha) and then into Albq. tomorrow morning. Pray for knowledge, patience and humility on behalf of the staff at the cancer center. For kindness, compassion and a tender heart from Doctor Libby, and for patience and tolerance for me. It appears that my "tolerance meter" stays pretty full these days. I'm working on doing better.

Did you ever watch the movie RADIO? Remember the scene where Coach Jones tells Radio to pick out some pants to wear? And Radio holds the phone out to the pants and says "Are these ok Coach Jones?" Last night Brooke was talking to Uncle Rick and Aunt Vera on the phone and she held the phone out to her new toys as to show them what she got. Mike about fell off the couch laughing. That's a classic!!! What a funny girl.

I hope everyone has a blessed day. May God be with you every step of your day.

Repeated blood test results - We've got a plan - INR results

We got the results from the blood "re-test" that we did last Friday...the IgM is 100 higher than it was a month ago. DANG! She is sitting at 1810 and 263 is considered high. What is going on? The other protein test that our Immunologist ordered came back normal - Praise God! I faxed all results to our Hematologist in Albq. Friday morning so he will have some time to think about it before our appointment on the 11th. Hope he got it!

I stayed home with Brooke Thursday for some mommy time. There's days every so often that she needs her mom and nothing else will do. Thursday was one of those days and honestly, I needed it too. A little decompression never hurts! She did a lot of sleeping, we went for a ride in her yellow car, hit happy hour for a root beer, and then spent an hour outside. It was beautiful; 72 degrees with some wind, but much too nice to be inside, so we did bubbles and danced and enjoyed the weather. What a nice day!

On Friday, we saw our Primary Care Doctor to bring him on board with what's going on and to help establish a baseline for Brooke and her care. We had only seen him once prior to this appointment so we're getting used to him and he's trying to figure us out. (Gotta wish him luck there! Ha!!)He's super sweet and very thorough, which I appreciate. He was complimentary on the path we're taking with Brooke. It's nice to hear that from a doctor because we wonder sometimes if what we're doing is enough. Or even if we're going in the right direction. He feels we are, and I appreciated the vote of confidence from him. It's a guessing game a lot of the time. He said we need to continue to operate in preventive mode with Brooke and address the blood issues with the Hematologist. I feel like we both have a better understanding now as to what the game plan is and what his role is. I'm hoping our new "team of local doctors" and their roles in Brooke's care will help take some of the pressure off Dr. Libby. We've got a plan! HOORAY!!!

The home healthcare nurse came Friday afternoon to take Brooke's monthly INR. OK, so the initial goal was to hit 2.0-2.5, which we never did. 1.8 is as high as we could get it so this became Brooke's norm. In January and again in February it was down to 1.4. Now, as of Friday, it's at 2.2. What's up with that? I've always heard people talk about how crazy Coumadin is and I agree. There is no rhyme or reason for it going up or down in Brooke's case because her diet hasn't changed. I have become a vegetable policeman getting onto her when she eats certain things. In fact, she gets to eat very little green or leafy vegetables. Spinach once since August, and it was a very small amount. She loves spinach! I suggested to the nurse that she ask the doctor if we can recheck the levels in a week or two instead of waiting the full month. With all of the other blood issues going on...we've got to be careful. 2.2 is pretty thin blood, or at least it is for Brooke! And since I don't know what the IgM means...we can't assume they aren't connected. Dr. Libby will have to figure this out for us!

Thank you God for another beautiful, sunshiney day! I love it. Birthday party tomorrow and Brooke is about to drive me insane asking for it. That's another blog for another day! We appreciate your friendship and your prayers.

Nightly Ritual - Not Feeling Well - Upcoming Birthday

Brooke has gotten really creative about what she brings to bed each night. Last night she shows up with a large ziploc bag (very large ziploc bag) and in it was the following: 1 Consumer Digest magazine ranking the best cars of 2010 (Sorry Toyota!), Mike's latest copy of Coach Magazine, a JCPenney sales book, the Springhill flower and shrub buying guide, a wet rag inside of a smaller ziploc bag used for her headache earlier in the day and the heating pad. Everything (other than the heating pad) was placed on the floor beside the bed, which I'm suprised she allowed. Usually everything sleeps with us. Funny kid! And have I ever mentioned that we think she has night vision? She has the most incredible night-sight! It's eery.

Brooke hasn't been feeling well for the past several days. There's nothing "visibly wrong" but we can tell she's not up to par. She seems a littler warmer than usual and continues to have head and stomach pains. I would love to have x-ray vision so I could take a look into her body to see what's wrong. Where is Superman when you need him?

In order to get Brooke's off of not feeling well, which can easily lead to a complete melt-down reqiring either mom or dad, I had to get creative yesterday and come up with a list of fun things to keep her occupied. She had the fun task of creating a birthday chain so we can count down to the 9th. She also is working on personalized birthday cards for the guests. The party is Sunday and she's super excited! Finally...a birthday party with an actual birthday! Ha. We're having the family over and a few friends.

Off to work I go...have a wonderful day! I pray for peace, love and happiness for each of you. May God give you the comfort and strength needed to handle your day.