Prayers Needed - Denver Trip

Rough day with Brooke...woke up with a new skin infection that is raised around the edges. That's new! Took 6 pictures of it and sent them to Albq. To make a really long and tiring story short: I took Brooke in to have a blood culture done at noon which will take at least two days to grow, started her on antibiotic and she's had high fever on and off all day. The spot on her leg has grown to about 4 inches by 4 inches and looks worse now than it did this morning. It's hard to keep heat on it when she has 102 fever! My mom is here to help - thank goodness. Poor Mike is at school in Albq. I feel for him because I know he wants to be here with us. Right now we're trying to stay out of the ER. If this fever doesn't go down - we'll have no choice but to go. Please pray for Brooke!

Another special prayer request is for our doctors. We are having signigicant issues getting our doctors to move on anything. Not sure why healthcare at the hospital has gotten to this point, but it's putting Brooke in jeopardy. We don't feel time is on our side with some of the things we have going on yet I can't seem to make any progress in getting resolution. I've been on the phone with two doctor's, two nurses, receptionists and insurance all day long and have gotten nowhere. I'm pretty much being forced to evaluate whether switching our insurance providers will solve the problem. I'll do whatever it takes to get the coverage Brooke deserves. So frustrating! Pray for guidance for us as we move forward and for Brooke to get care. ANY care at this point would be better than what we're getting.

The trip to Denver was nice. Brooke did great. We saw an Immunologist and a Cardiologist. Both were nice and very knowledgeable. The Immunologist said the Neutropenia is caused by Brooke's spleen holding the Neutrophils hostage. If he removed the spleen - she would be cured of it. BUT...you don't want to remove a spleen on a person with Brooke's problems. Scratch that one! He suggested low grade antibiotics all the time to help with skin infections. He also is running a bunch of blood work looking into why her IgM level is so high. The Cardiologist did an EKG and told us he was 90% certain she has a heart infection. He tied the skin infections to the "tumor or clot" she has in her heart. He said it is most likely infection and that she needs to be on high-powered antibiotics for 6-8 weeks intraveneously.(OUCH!)Oddly enough, he is friends with our pediatric cardiologist in Albq. Small world! And the Immunologist in Denver trained our Immunologist in Albq. Hmmmmm....If only our Albq. doctors moved at the same pace the Denver ones do!

That's all for now. I'm pooped! Going to go hold my baby and pray this fever away!

ALOHA!

We're home. Very tired...I think the time difference has hit us. That flight is a killer! It was easier going than coming which is backwards from how I figured it would be. I just can't sleep on an airplane; can't seem to get comfortable. We had a wonderful time; Oahu is a beautiful island full of many "wow" moments. There is natural beauty everywhere all the time and it was a little overwhelming at times. It made me think that maybe they got all of it all which left us not much of it? I found a cute little town I'd like to move to on the island if I were to suddenly come into half a million dollars or so. Ha.

Brooke did great while we were gone. No problems whatsoever. In fact, in true Brooke form, she was a perfect angel making the caregivers doubt everything we warned them about. In a sense, "she showed us who was boss." The infection on her leg looks much better and her skin has cleared up. Love what the antibiotics do for her; just hate that she has to go on two of them in order to get relief. She cracks me up! Instead of playing with the things we bought her (her cards and a ukulele), she's more interested in what isn't hers: she's wearing 5 shell bracelets I bought, two shell lei's, a bean lei, and tinkering with 10 keychains. Typical child...give them pots and pans over toys and they're happy as can be!

I'm busy trying to shift gears from Hawaii to Denver to ensure I have everything ready to take with us on the trip. We leave for Albq. after work Tuesday and we fly out early Wednesday morning. No claritin or benadryl from this point forward...wish us luck with that! Allergy testing is the first order of business on Wednesday, Cardiology on Thursday morning, and I have no clue of anything else planned. I just hope this trip provides something that will benefit Brooke. Answers would be great!

Thank you for your prayers and well wishes while we were in Hawaii. Turning off the worry is no easy task, but we finally managed it a few days into the trip. Mike and I needed this time together and I am so thankful we were able to go. Please pray for a safe journey to Denver, for comfort with the doctors we see, for knowledge on their behalf, and for answers if that be God's will.

Mahalo and Aloha

Brooke's infection looks much better this afternoon. She developed cellulitis yesterday that had us worried, but the antibiotics seem to be doing the trick on all of it. Her leg looks better and the swelling on her face has gone down considerably. These infections just take time! I'm praying for continued (fast) healing. She's been happy and active today and is driving us both nuts wanting to go to Ma's house NOW. That will be ok for about an hour until she starts asking for mom and dad. 7 days of that may drive all of the grandparents insane! Ha. Pray for comfort for Brooke; both physical comfort and mental comfort. Mom and dad are her security blanket and more so with recent illnesses. Also pray for strength for our caregivers. Physical strengh and mental strength. This is going to be a challenge for everyone.

Mike and I leave on our trip early in the morning. We fly from Amarillo to Dallas and then straight to Honolulu. I'm getting excited, but it's hard not to let the worry drive you. I've been praying about this and asking God to carry the load for me. I forget to turn things over to Him sometimes. Please pray for a safe journey for us. For a relaxing week where we can rejuvenate ourselves so that we come home - we're better parents. Our batteries definitely need to be recharged! Thank you for the prayers and for your friendship!

Mahalo. Aloha. And we'll see you in a week!!
Gena

These Darn Spots!

3 days from our trip and Brooke has spots. 6 on one side, 3 on the other, 2 in the middle and 1 really nasty one on the back of her leg. GEEPERS! We've been watching the 6 and 3 and so far they are smaller like mosquito bites and don't seem to be getting any worse. The 2 in the middle are (excuse the expression) zits. On the eyebrow and eyelid. Ouch. They have made her eye swell a little. We noticed the big, bad wolf last night. It's on the bend of her leg behind her knee...one of those places that will be almost impossible to heal. Not sure when it showed up...we just noticed it as she was climbing into bed last night. It's already infected. So...Mike took her to the doctor today for another round of antibiotics. Praying that they will work their magic like they did last time and that she'll be on the road to spot-freedom soon.

Went to SO state track meet two weekends ago in Albq. and Brooke had a blast as usual. Did several special "O"'s with her good friend Randy, had a lot of the family there cheering her on as she threw the tennis ball and walked her 25 meter race on Saturday, and played in the Special Orchestra. She loves seeing her friends...oh, and the dance! Loves to dance. Two gold medals came home with us and a lot of hugs from some very special people.

Hawaii in 3 days. Am I ready? You bet. Worried. Sure. Scared. Yea. Really praying about it right now...need to turn it all over to God and place it in His hands. I know He will take care of Brookie while we're gone and will give the grandparents the strength, patience and and knowledge needed to take care of our precious cargo. I guess what makes this trip so different is that we won't be a simple 2-hour flight away like we usually are. Hawaii is so far. But Mike and I are looking forward to spending time together in one of the most beautiful places in the world. We are so blessed to be able to get to go and are very thankful for Fern, Frank and my mom. Without these folks - it wouldn't be happening.

Please pray for quick healing for Brooke. For no more fever and for the spots to go away. Pray for calm nerves for her as she worries about us leaving. Pray for calm nerves for me as I struggle leaving her. Pray for a safe trip for us and for me to be able to "leave it all behind" and enjoy the special time with Mike. He deserves that. We need this trip. We need to refresh, regroup and revitalize. Ask for God to be with the grandparents as they care for Brooke. To ease any fears they may have and relax and enjoy their time with her. Pray especially for Brooke...ask God to continue to comfort her, and let her know she is never-ever-ever alone.

Thank you all, and if I don't have time to post before we leave -
ALOHA!