I know - I know - I know

YES! I'VE BEEN BAD AGAIN. I'm sorry for taking so long to post. School is wearing me out, and it's only going to get worse between now and May. So please bear with me. Once I graduate I should have more free time. I BETTER HAVE MORE FREE TIME! I'm busy right now trying to get all of my homework for the semester finished in my two classes before the other two classes start. I will be carrying 4 classes for 4 weeks...OUCH!

Brooke is doing well. She got a Neulasta shot today...anyone want her to spend 3-4 days with them? Ha. Maybe THIS shot will be different and she will want to sleep. That would be nice!

I got my new van about 10 days ago...Eula Mae...and believe it or not...I really like it. It's good driving, spacious, comfy, and sporty (for a van). I can't wait to get her on the road for a trip. Brooke LOVES her. She begs to ride around every night. Whoever thought of seat heaters for leather...I LOVE YOU! Totally awesome! A warm butt makes for a happy lady on cold days.

Christmas at our house is always viewed through the eyes of a child, which in my mind is just precious. Brooke is sooooo excited and is about to drive us over the edge by asking "how many days?" She asks about every 40 seconds. We have our 8 trees lit, lights on the outside of the house and about every kind of sweet thing to eat that you can imagine. We will definitely be starting our family diet next week!

Merry Christmas to everyone! Be safe, be happy and BEHAVE.
Gena

Edgewood - This Darn Shot

As soon as the Cowboys lose, we'll be on the road. (Sorry honey!) Supper at the Comet in Santa Rosa (the highlight of any of MY trips to Albq. I love-love-love the red sauce!) and then on to the world-famous Hankins Hotel in Edgewood. (Maybe not world-famous, but free lodging with the family.)Brooke's appointment is at 9:00 in the morning. Pray for safe travel there and back tomorrow and strength and patience and calm nerves for all of us.

Well...we've come to the conclusion (after last night) that these Neulasta shots react in Brooke like steroids used to. GOD, GIVE US STRENGTH!! Brooke is wired, at all hours of the day and night, and is the ultimate eating machine. Mike and I are zombies today and Brooke is going strong. It's events like these that really make us feel our age. Ugh.......

Happy Monday tomorow to all.

Happy Ho-Ho-Holidays!

Life is not a race, but indeed a journey. Be honest. Work hard. Be choosy. Say "thank you," "I love you," "great job" to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you've been given-it is not accidental. ~ Author Unknown

Christmas is in full swing at our house. All of the trees are up and decorated. We have 8 trees that sort of came about by accident. Only 2 big ones that require work, so no big deal really. Brooke LOVES the holidays! The plan for today is to finish wrapping gifts and our finalize our Holiday letter we mail out each year. Oh...and a few homemade gifts need to be finished as well.

Thursday, Brooke got her second Neulasta shot (stimulates neutrophils in the white blood via bone marrow). Neulasta is a longer-acting form of Neupogen, which is what she had been getting. She gets a shot bi-weekly at the cancer center and we had good results with the first shot. After two weeks, her neutrophil levels were normal, which we haven't seen in two years. So we skipped a week because insurance won't pay for the expensive shot unless it can be justified. Blood work on week 3 showed her back down to almost nothing. So we know the shot boosts her white blood cells for a little over 2 weeks. That's better than not at all! We love Dr. Curry and his nurses! Clovis is blessed to have such a nice facility!

Tomorrow we leave for Albq. for another dental appt. Monday. A cavity requing a filling. Please pray for a safe, uneventful trip and for a successful dental visit.

I still have no van (it's due to be here next week if all goes to plan) and I am appealing the wheelchair denial with insurance. The insurance folks have a deadline of next Wednesday...if I don't have a denial or approval letter in my hand or haven't received a call from them...my nice tone will be replaced with my not so nice tone. Enough is enough and my patience is quickly running out. To date, I haven't received the initial denial letter yet I have already appealed the denial over the phone. The cart is in front of the horse! It's been two months.

I'm busy with school...trying to get all of my homework done now because I'll be taking two classes in January at CCC and my 4 will overlap for a month. YIKES! The plan is to GET ER DONE! After I finish this semester (Feb.) I only have 3 classes left, which is why I am going to take two at CCC and my final class with WBU in March. So, I'll be carrying 9 hours next semester which I've done once before but it's hard. 3 classes...5 months of stress...and I'M DONE! I hope to graduate next August. I'm so ready!!! Please pray for me as I wrap up my degree. I know it's not going to be easy on me, nor Mike or Brooke.

I hope everyone has a blessed Saturday! Hugs to each of you.

Where have I been?

Two months today...that's how long it's been since my last post. I am truly sorry. My intention is to blog on a fairly regular basis so I can continue to keep my blog followers coming back to check for more updates. I don't have a good enough excuse for why I haven't posted in two months, just that I haven't. So...let's start fresh. Here's what's been going on:

October
Brooke was made an honorary firefighter with the Clovis Fire Department on 10-3. She made the local paper and the news in Amarillo, Roswell and Albq. It was a great day full of lots of friends and more good memories. We love our firefighter family just as they have come to love Brooke. And now she is one of them. We are so proud!! You should see her helmet!!

Made several trips to the dentist in Albq. and we ordered new (bigger/heavier) wheelchair for Brooke, which made us realize that what we currently drive isn't going to work with a bigger chair. Not with luggage too. So...the "mini van" discussions started. Mike is freaking out at this point. Never wanted a van. Feeling a little less masculine or something? Ha.

September
Dental and Immunology appointments. Nothing out of the ordinary.

Brooke informs us on 9-22 that she needs to see Mickey Mouse. She "worked" on her dad for 3 days and finally wore him down. Looks like we're going to Disneyworld next summer.

November
Another trip to the dentist.

Can't seem to get Brooke well. She's struggled with allergies/sinus congestion since September. Multiple docs/meds.

I sold my Highlander (White Lightening). This was a sad day for me. I loved that SUV! But I sold her to a good friend who was taking it to her sister in Ohio. Her new name is Snow Baby and from what I hear...everyone is happy. Eula Mae Hankins is on order (my mini van). She is due to arrive the first or second week of December, so in the meantime...I am sporting a fancy yellow car.

We got denied Brooke's wheelchair, but I am appealing it. Goofy process!

Mike finished cross country and had a really good season. Yea Clovis CC!

I am taking two classes at Wayland...3 more to go once I finish these two. Homework is a little more than I planned on having, so bear with me.

Preparing for Christmas...have done a little online shopping but really need to take a trip to Amarillo soon! We'll start the decorating process next week...Brooke will be THRILLED! She's wanted us to put the tree up since July!

I guess that's about everything in a nutshell. I promise to do better.
Thanks to everyone for sticking with me and continuing to come back to the blog for updates. I love you all!

Thanks Friona!

Four years ago this month marked a bittersweet time in my life. It was my 20th class reunion. Two days pre-reunion my dad died and two days post-reunion he was buried. And while that 5 day period was hard and painful, I thank God for the events of that weekend and for my classmates. They helped make an unbearable time in my life a little better. You see, I was blessed by growing up in a small town. Most of my us went to school together for 13 years, and when you have a class size of 74...you get really close. Don't get me wrong, I'm not dissing big schools, I'm just saying I feel really blessed to have a close, personal friendship with a lot of my classmates. They're family.

Two weeks ago, I attended Friona's all-school reunion. It was the 100th anniversary of the schools and I had so much fun! It was neat seeing all of the history, not to mention the people. Our family alone represented classes from the 40's, 50's, 60's and 80's. (And yes, my Granny was there with her date.) I was thankful that UH didn't remember T and I. There's a lot of unsolved mysteries from the 80's. Ha. And it was nice to learn that Mr. P. didn't retire because of me and D. And how in the world does Mrs. R. remember seating charts from 25 years ago? And sweet Mrs. O still looks the same. She was one of my favorite teachers and represented her Friona class from 1936, I believe. So many memories!

Class of 83...it was great seeing our Seniors! J...you're as crazy as ever; always fun to be around. I know coming home can't be easy. J, you inspire me...where do you get the strength and courage to do all that you do? Sign me up! And J...when God closes a door, he opens a window. It was so nice seeing you again. Hang in there my friend!

Class of 85...thanks for letting us hang with you guys. What fun! It was nice seeing each of you. B, you amaze me; what a success story! S, thanks for asking about my daughter - it meant a lot to me. T...what can I say...your wit keeps me laughing. B...you haven't changed bit. And M...as sweet as ever...I enjoyed our talk. And R and J...I love you guys; you made band so much fun!

Class of 86...sorry you had to be the lone male J, but you can honestly say that you were a chick magnet! T and D...I enjoyed rehashing horror stories from the past. M, thanks for being my date...so happy you have J in your life! M, it was great seeing you, my Land of Enchantment comrade.

Good friends and great memories!

My Dad

Today marks 4 years since my dad died. It was a sad, hard day. I'm so grateful that dad is no longer in pain, but I still miss him. My dad was the king of dry wit. He was funny, but in a really off-beat way. I miss that. I miss talking to him; he was my biggest supporter. I miss his voice, hearing him call me sweetheart. I miss his smell...he always smelled so fresh and soap-clean. I mostly miss the relationship he had with Brooke. He played such an intrigal role in my child's life and at times, she doesn't know what to do without him. While I hate that so much of his life was spent disabled, I am thankful for the time it allowed him to be with his family. Sometimes the hardships in life change us in ways we can never imagine. Dad was Brooke and Briana's best friend.

The last 5 days with Brooke have been hard. She is sick and and has been a real booger-bear at times. Something occurred to me today...she knows it is the time of year when her granddad died. How does she know? She can't read a calendar. I haven't talked about it in front of her. And...oddly enough, she hasn't seen me cry. So how does she know September 14th? Isn't that amazing! It certainly explains her outbursts lately! I can't imagine feeling pain or confusion or grief and not being able to express your feelings. Friday, she grabbed her pillow that has a pillow case with a picture of granddad and her and cried. She kept pointing up to heaven. This morning I had to come home from work for a while...the sitter called because Brooke was screaming and crying. She wanted her mommie at home, she doesn't feel good, and she pointed to heaven and asked for granddad again. Broke my heart. My dad left a huge void in Brooke's life. Her was her bestie!

Life is so uncertain...please enjoy time with family and friends and thank God every day for those you love. Rest in peace dad!

Slash with a side of Smiley -- Another trip to the Dentist

I got the idea of "Slash with a side of Smiley" from an incident at work last week. Funny how life experiences give us the very topics for which to write about. The story goes like this: I sent an mail asking for communication to include me. It was a very simple, polite request that made complete sense for the situation in which it was intended. What I got back was some really harsh and stinging words followed by a smiley face. I felt like I had been slashed with a knife! Here's the deal...a smiley face doesn't ease the pain, nor does it negate the ugliness of the words. The lesson here is that we all need to be careful what we say. There's no need to be ugly to people. Words, both written and spoken, cannot be taken back so be careful what you write and say. Choose your words wisely. Most importantly, use smiley faces appropriately. Let's reserve them for happy words!

We will be taking a day-trip to Albuquerque Tuesday for a follow-up with the dentist. This is the visit to determine if the tooth knocked loose during our last appointment can remain or if it has to be pulled. Mike can't go so my mom will be making this stressful trip with us. Please pray for our safety there and back and a successful appointment. Pray for Brooke to be as tolerant as possible with the process, for lessened stress, heightened tolerance, and no sedation issues. Pray for minimal bleeding, no more x-ray cuts in her mouth and most importantly for no infections or complications. There are no words for just how stressful dental appointments are for Brooke. Please pray for mom and I for patience, tolerance and strength. Other than surgeries, dental appointments are the most stressful things we have to endure. May God be with Brooke, holding her hand, letting her know she is never alone.

Hmmmm....

Hello friends. It's been a while since my last blog so here goes...

Good day at work. MADE IT HAPPEN. Willed it to happen. I decided that today was going to be a good day so it was. Should I try two for two?

Do you ever wonder why some people have quirky pet-peeves? I usually don't mind them as long as they keep they're kept to themselves. I had one "thrown at me" today that has left me scratching my head ever since it happened. Actually, it's left me devising ways to purposely drive this person nuts. Ha. I was nice...I obeyed and kept my mouth shut, but I wanted to say, "What does it matter? Does it affect how I get things done?REALLY! Guess some folks just feel better nit-picking their way through life. Whatever floats their boat. Do you feel like a bigger person now? Woooo. ***INSERT SARCASM***

Ok, so I just learned that my 85 year old grandmother has a date in a few weeks to an event I will be attending. Serious. She has a date. How odd will that be? Something I keep reminding myself of...no one deserves to be alone. Hope she has lots of fun!! You go Granny!

Brookie is still feeling well - Praise God! She is so much fun. She's has been a hugger, a toe kisser, a noggin rubber, a birthday song singer, the boogey-woogey queen, and a chronic giggler for days and days and days. It's cute. Entertaining too! I invite all friends to our house for a good dose of BROOKE. She's just the ticket for whatever ails you!

Prayers out to the sick, the hurting, the lost...

Rough Day

Yesterday was just one of those days. There are really no nice words to describe it. It started out with Brooke having a seizure early yesterday morning. I don't think it was a grand mal, but I can't figure out exactly what kind it is? She has had 3 or 4 like this now and they all pretty much mimic each other. Either the sound she makes or the shaking wakes me up and I find her propped up on her right elbow jerking. It typically lasts anywhere from 10 seconds to maybe 25 seconds and then stops. She usually breaks a sweat and has labored breathing for a minute or two following it. She is coherent within a minute or so and the entire process from onset to totally ok is less than 5 minutes. These are very odd.

The day proceeds with communication issues regarding the respite providers which led to other issues which still have not been resolved. My people tolerance is pretty much gone by this point in the ballgame. Now it's time for the bi-weekly trip to the cancer center for a Neupogen shot. Ok, this was the first time I've taken Brooke with the shot being done in the treatment room. Was not mentally prepared for this! My nerves were already frazzled so it's easy to understand my sadness with seeing the 3 people who were in there undergoing chemotherapy. And while I'm wondering about their situation, I got the sense that they were just as curious about ours. After all, a trip to the treatment room at a cancer center for any reason can't be good. And there we sat. Just a note here to say that these guys are awesome. So patient, and compassionate. So, the shot was given and we walked out of the room. I was fighting back the tears and Brooke managed not to...she proceeded to grab a hold of the bathroom door handle and throw a big fit. It was all I could do to pry her away. In fact, it wasn't until the nurses brought her the basket of goodies that she did give in. Not exactly sure what was up? We fInally made it to the car where I fell apart. Just "one of those days."

The rest of the day was shot for me, I didn't know whether to hide under my desk or cry all afternoon. So...I did what unfortunately seems to come so easy to me these days...I gripped. (Thank you L and D and T for being such a captive audience.) Mike came home exhausted from his first day of school and Brooke's stomach hurt from the high-powered antibiotics she's been on for the past week. We all spent the evening chilling out, which is exactly what this family needed!

Our Brookie is Back!

Hooray...Brookie is back! Yesterday was her turning point. She's back to being silly, giggley and bossy. Ha. She set out all of the usual cake-making ingredients last night and insisted I bake her a spice cake. Plus, she's taken over my iPAD. What's up with that? She is hooked on You Tube videos...she watches totally G-rated things like: Wheels on the Bus, If You're Happy and You Know It, and Itsey Bitsey Spider. OVER AND OVER AND OVER AND OVER!! It looks like Santa may have to start saving up to buy her one of her own! OUCH.

First day of school for Mike today...NOPE, HE'S NOT HAPPY TO BE BACK. Usually I make fun of him since I work year-round and he doesn't have to, but life really is easier when he's home with Brooke taking care of things that I don't have to while he's off. I love that! I also get bummed now because it means winter is around the corner. Winter bums me! I don't like cold weather nor the illnesses that come with it! It scares me with Brooke's health problems.

Had some friends asking for WDW info last night on FB. Little did they know that their request was right up my alley! This psycho trip-research girl was all over that request! I sent them 8 emails. Seriously. I apologized in advance, but I LOVE planning trips! I really think I missed my calling...should be a travel planner. The downside to tonight's trip down Disney lane is that now I want to go back. My dream is to go at Christmas so I can see all of the decorations. I hear it's gorgeous. Maybe some day. It's on my bucket list! T & C...send me a postcard in December!

Prayers to Tina's mom, the baby who shot himself with a brad-nailer, the 14-year old with a brain tumor, my co-workers friend with a mass in her kidney and anyone else who is suffering, struggling or lost. May God bless and comfort everyone.

Night all and God Bless.

Post- dental appointment week

Monday:
Nothing went right at the dentist. They have gone digital so x-rays of Brooke's entire mouth had to be done, while she is screaming at the top of her lungs. This process (and I'm not sure they finished it) took an hour. Brooke screamed so hard and violently that I was afraid she'd throw a clot or have a stroke. It was pretty intense.

The bite block they used, along with Brooke's resistence caused a tooth to become loose so the dentist was called in to evaluate. An x-ray was taken of that tooth and to make a long story short...that was the end of the process. Her teeth didn't get cleaned except for some scraping on one side nor did the two teeth that have holes in them get evaluated. We have to go back in 4 weeks to re-evaluate the loose tooth to see if it has healed or if they'll have to pull it.

Brooke was angry with Mike and I (more so than usual) but we did manage to somewhat buy her forgiveness in the toy isle at Target later that day. She slept all the way home with mom sitting in the backseat with her rubbing her with her hammar.

Tuesday:
Swollen right cheek, extremly sore mouth, fat lip, cuts at both corners of the lips, drooling, no energy and just feels bad.

Wednesday:
Called the dentist because the swelling is not getting better. Dentist relays message to me that we need to bring her in. WHAT? I nicely told the receptionist who was acting as the go-between that I'm not driving 4 hours for a fat lip. I just need to know what to do to help relieve some of her discomfort. So...a different antibiotic than the one she was on was called in and we started "trying" to rinse her mouth with warm salt water.

Thursday - Today:
Still somewhat swollen, lip still big, drooling only at times, no energy and still doesn't feel well. Sometimes we wonder why we bother? I mean, I know we have to do our best to try to maintain her oral health, but if maintaining it brings her down this low - is it worth it? Brooke's mouth is a mess anyway and I figure the x-rays probably cut it all up inside. And for a kid without the ability to fight ANYTHING or HEAL...the process is a super slow one.

I'm really working at not being angry. Prior to this dental appointment Monday, she looked and felt great. She was happy. Now we're back in worry mode. Please pray for the ability for her to fight. For healing. For comfort. And for our Brookie to return back to her sweet, happy self soon.

Love you all.

A Week in Our Shoes (pre-dental appt.)

Monday: Take Brooke to Hematologist for her pre-dental appointment appointment. Call dentist in Albq. to confirm appointment following Monday and ask for the sedation meds to be called in.

Tuesday: Free day. Time to start dreading the dental appointment and start worrying about the risks.

Wednesday: Run by the pharmacy after work to pick up the sedation meds. They're not there.

Thursday: Call dental office to ask that the sedation meds be called in. Again. Also ask for a refill for another bottle of Chlorhexidine for her gums. She bleeds awful when we brush her teeth. I run by the pharmacy during lunch to pick up the sedation meds, Chlorhexidine and a gallon bottle of Hibiclens ($64.98) that I ordered Monday while I was there.

Friday: Appointment with Hematologist to get Neupogen shot to help protect Brooke for the dental appointment Monday. Did I mention that these shots are $3,000? Take Brooke off Coumadin and leave her off for 3 days. Have to thicken up the blood to eliminate bleeding risks!

Saturday: Start Brooke on antibiotic and remain on it for 4 days. No Coumadin.

Sunday: Antibiotic. No Coumadin. Travel 3 hours to the Hankins Hotel in Edgewood (Rick and Vera's house). This has become our "home away from home." Brooke never sleeps well here because it's not "her bed at her house." Too excited about seeing Uncle Rick.

Monday: Antibiotic. Sedation meds at 9:00 AM. Travel to dental appointment. Turn off I-40 onto University and wait for Brooke to start crying. She begs us to go straight because if she knows we don't...we're turning into the parking lot at Carrie Tingley dental clinic. The kid knows Albuquerque! We turn into the parking lot and look at the petrified face of this innocent little girl with eyes begging us not to go in. We go in. The dental appointment is at 10:00. Brooke is strapped onto an adult papoose board, head, arms, legs, chest...every inch of her is strapped down. She looks like a Brooke-Burrito. We're use to doing this, used to seeing it done but it bothers most people. She's not happy. Our nerves are already shot by now. Brooke tries to kick and does manage to scream for the entire 30 minute appointment. The hygenist has to be fast, patient and have a steady hand. Hopefully she's compassionate. The sedation meds have slowed Brooke down some, but her adrenalin keeps her fighting with all her might. Hopefully, not much bleeding occurs since the Coumadin has been stopped. The appointment ends...and SURPRISE...there are multiple issues with her teeth that will require subsequent appointment. "What? You're booked 5 months down the road?" "OK...we'll take it". What choice do we have since they are one of two dentists in our state that will see kids like Brooke. Besides, you go where insurnace pays! Amarillo and Lubbock are not options, even though they are closer. We leave the appointment, usually in her wheelchair because she's sedated. We put her in the back seat where she begs mom to "hold her." She's asleep within 1 minute. Isn't it amazing what will power can do? She refuses to sleep until after the procedure yet she sleeps pretty much for the next 4-5 hours. Note to self: NEXT TIME, GET A WHEELCHAIR THAT RECLINES! We got eat, run by Target, stop at Sam's and head home. I ride in the back seat with Brooke so she will sleep. I massage her head the full 4 hour drive with her famed Home Depot orange plastic hammar. (This is her comfort item and she likes me to rub her with it.)Our nerves are fried. Brooke is worn out. Mike is alone in the front seat listening to his iPod. The next 2-3 days are spent trying to get Brooke caught up on sleep and trying to ease her frayed nerves. It's back to work for me on Tuesday and the start of Mike's last week of freedom before school starts.

We pray for no seizures caused from the stress, no infection and no bleeding. We just pray! Please pray that all goes well Monday. We don't say the "D" word at this house because it's Brooke's greatest fear. God, be with my baby during her cleaning and afterwards. Protect her from blood issues, clots and infection.

Stepping Outside the Box

I'm about to embark on a journey that until now - has always been tabu with me for Brooke. I'm about to start her on some non-traditional medicine. I have a really good friend who is in to homeopathic and other alternative treatment options. Her son, like Brooke, is immune compromised and has other severe medical problems. Yet he is super healthy. She swears by her products and has turned me on to a few for myself which I like. She recently introduced me to what she gives her son. Being Gena...I have to research everything, dig for the negative feedback online, talk to people about what I should do and then think it over for a few days. Well...it's like this...what other options are there? This product is sold as a natural antibiotic and is said to be effective against fighting and killing bacteria, fungus, parasites, etc. It's also touted as an immune booster. The things that Brooke can't fight or handle on her own.

I have the gel, which is going on Brooke's hands tonight to see what it will do for a couple of sores she has (she tends to suck, pick and knaw when nervous). I also have the liquid which can be drank, put in the ears, the eyes, up the nose...whatever. It's a totally safe and flexible alternative. I called the company several days ago to ask if it would have any interaction with Coumadin, GammaGlobulin or Neupogen and was told no. So, starting tomorrow morning, Brooke will start taking 1 tsp. in the AM and 1 tsp. in the PM. I'm excited to give this a try. It helps me "see" and "know" someone who is walking, talking proof of its success and I thank my pal for talking to me about it. I pray that Brooke will be another success story. This stuff has been proven to kill SARS, MRSA, Pseudomonas (this is Brooke's enemy) and many other types of infections.

Please never be afraid to go to a friend with a suggestion that could change their life. If you say or do somethat that offends them - they'll get over it. It's easier to say I'm sorry than to live with the regret of having said nothing at all. Thanks P; I love you and G and D!!

Please God...let this natural remedy work. Let this be the weapon that works against our war!!! And help ME know how to help HER.

Wedding - Firetruck - Snake

Brooke did so good in Briana's wedding Saturday night! She was a little doll. She smiled as she walked down the isle, waived once she got into her position and then smiled some more as Briana walked down the isle with Kirk. Briana was a beautiful bride! I'm so proud of the woman she's become and am excited for her and Jim to start their life together. May God give them the happiness that Mike and I experience. Unfortunately, Brooke paid for the excitement of Friday and Saturday by having a melt-down Saturday night, reflux, stomach ache and sleeping all day Sunday. Too much all at once and not enough strength or stamina to handle it. She's doing better today. Please continue to pray for Brooke as she nears the end of her antibiotic cycle.

A fire truck came for a visit today. Brooke knew. I put her fire truck shirt on and baked cookies...she put two and two together and just guessed it. How smart is that! I always bake the firemen cookies when they come or when we go visit them - just to say thanks. They are so good to think of Brooke and offer to come by. This makes fire truck visit #4; two at our new house and two at our former house. We love the Clovis FD!! YOU GUYS ROCK!

Went on a field trip for work today with my boss...out to Dripping Springs, NM. A zillion miles out in the middle of nowhere then 1.5 miles up a mountain. On our way down the mountain we heard something, so the guy we were with backed up. There sat a 10-button diamondback rattlesnack hissing at us. WHAT NERVE! Ha. I happened to have my camera so I took lots of pictures (from inside the SUV). Ugh. We're going back to the same area Wednesday but taking a dirt road 21 miles up to a wind farm. We've been warned to watch for cows, deer, elk and antelope on that road. And weapons aren't allowed in company vehicles or on company outings. What is that all about? You ever been to super rural NM in the heat of the summer? There are critters everywhere. Gives me the creeps just thinking about it.

Lebron -vs- Brooke

I've been watching all the news stories about Lebron's decision to move to Miami and something occured to me:
Why he chose to leave Ohio and move to Florida is his decision and his decision alone. I guarantee he didn't make the choice lightly or without heaviness in his heart. The bottom line, whether fans in either location like it or not,it's HIS decision to make. And, he has to do what his heart tells him to do and ultimately what will be best for his career moving forward. Sometimes decisions have to be made on NEED rather than on LOYALTY. Who can blame him for wanting to move to a team that will potentitally give him what he feel's his career has lacked...a championship.

The same goes with Brooke. As a parent, sometimes you get faced with decisions that aren't simple ones to make. Decisions that you know will affect people negatively on one end while hopefully giving you the outcome that you need on the other side. I use our recent insurance change, hospital change and doctor changes as my comparison. Brooke's been on the same insurance for 18 years and has been with the UNM system for 20 years. But it no longer worked for her. So us deciding to change everything in a course of a day was a HUGE decision to make and one that (for us) had to be made overnight. I cried about it, prayed about it, turned to anyone I thought could help me put it into perspective, but in the end...it was OUR decision. We did what we felt was best for Brooke and her healthcare moving forward. We made the move to give her more healthcare options and some new perspectives. Sometimes a new set of eyes is what you need. And while it hurt to make this decision, I know in my heart it is the right one.

So before you judge someone for a decision that you feel is wrong, unfair, hypocritical, or whatever the case may be...consider the person who had to make the decision and try to put yourself in their shoes. Most of the time, you can't begin to fathom what life in someone else's shoes feels like; therefore it's only fair to take a moment to consider the thought processes, heavy hearts, prayers and possibly tears that go into such a life-changing decision. Whether it's a severely over-paid basketball star or a chronically ill little girl...it's the same process.

The Rarest of the Rare

The first three years of Brooke's life about drove this momma insane. They were spent researching (before the onset of the Internet); hours and hours were spent at the library looking up things. The word "undiagnosed" about did me in! I'd find some syndrome that sort-of matched Brooke and would call nurse Betty and say "Could this be it?" Her reply was always the same, "No, Gena." I struggled with not having any resources to turn to. There were no books I could check out that would help me with Brooke. There was no camp I could send her to. There were never any answers. I did what I thought would help me and co-founded a support group for parents of disabled children in 1991. Parent-2-Parent was just what I needed, but I learned after about two years, that it wasn't what others needed. We all grieved in different ways and while I was comfortable talking about mine and being "out there" with it, ohers wanted to be left alone or they wanted to grieve in private. It was with great sadness that I finally gave it up. I realized I couldn't force my group on people, nor could I continue with the expenses of mail-outs if only 2-3 people were going to attend.

Today, not a lot has changed with Brooke in regard to not being able to find resources to help. I've moved past the insanity of "not knowing" and can easily deal with that now, but the problems that Brooke now has in a lot of ways have put us right back to the "aloneness" of 20 years ago. The medical issues she has are not ones that are easily explained or even common in some cases. I was on Amazon last night buying a book on Healthy Alternatives and decided to look into Neutropenia. Pretty much the only books you can buy for this are Merck doctor's manuals for $200. So I tried books on blood clots or Warfarin...pretty much the same thing...there were books, but nothing that really seemed to "fit" Brooke. The problem is...nothing ever seems to fit. Brooke is a round peg trying to fit into a society of square holes. This is so hard as a mother when all you want to do is to do your best in regards to mothering her.

While our gem may be rarer and more different than others; we realize she the most brilliant and precious gem of all! I'm not going to sugar coat it...life with Brooke isn't easy. She didn't come with an instruction manual; this is a discussion the big guy upstairs and I will have one day. Ha! There are no books that fit, no camp centered around her needs, and sometimes...absolutely no one who can figure any of it out, including most doctors. At at the end of the day, she is just BROOKE. Our Brookie. One of God's most awesome (and perplexing)creations. And, for some reason, he chose Mike and I to be her parents. All we know to do is pray and ask Him for guidance and direction. God is the person in charge of her care; without Him...we couldn't do it.

Thank you God for Brooke! Please continue to give us strength, wisdom and the ability to care for her.

A lot has happened...

Home from Denver a week ago last Saturday, spot shows up on Brooke's leg Wednesday morning (wasn't there Tuesday night), admitted to the hospital in Clovis Thursday, transported via ambulance to Presby. in Albuquerque Friday and finally back home late Wednesday night. This was a NASTY infection! It went from a silver dollar size to covering her entire thigh in a matter of half a day! And that's with three doses of an antibiotic in her system! Long story short...she's on high powered antibiotics and so far so good. Please pray that these meds continue to clear up what's left of this infection and that her body is able to fight anything else that might show up. This is the challenge moving foward!

We no longer have the doctor/hospital issues we were having...I moved our insurance over to Presby. as of 7-1 and started fresh with their hospital and their doctors. I pretty much "got rid of" everything we have known for the past 20 years, with the exception of our Immunologist. Our pediatric Cardiologist is at Presby. and since we weren't getting anywhere at our old stomping grounds...I decided it was time to go where Brooke would be treated. A mom's got to do what a mom's got to do! Here's what I'm talking about: Our original cardiology appt. wasn't until next week! That's 8 weeks after a mass was found in Brooke's heart. This mass was found from a test ordered by a doctor there that has somehow fallen off the face of the earth! Haven't seen or heard from her since we saw her in early March. Our Immunologist plead with the Cardiologist to get her in last week when he learned she was in the hospital with an infection - and they wouldn't do it. That sealed the deal for me. If you don't care - I'll find doctors who do. The care we got at Presby. in Albq. was great. No complaints whatsoever. This is a prayer answered!

We did get some much needed answers finally. The mass in the heart is a blood clot that is attached to the right atrial wall. Good in that it is attached and not freely moving. It moves with the heart. Our Cardiologist feels it may have been there for a while and could've been caused from insertion of the second port 9+ years ago. A nick. Treatment? We're on Coumadin...no change there. As long as this tubing remains in her leg, she'll be on Coumadin. While a blood clot isn't great news ever, especially in the heart, it beats the two alternatives! An infection of the blood has been ruled out, which was also good news. The blood cultures didn't grow anything which told the doctors that the heart isn't infected and that the broken off tubing in her leg isn't the cause of these problems as was originally the thought. The recurring skin infections is pseudomonas, which is a bacteria on the skin that we all have. Because of Brooke's neutropenia - she isn't able to fight it. This is going to be a challenge from now on! We saw a Cardiovascular surgeon who said he could remove the tubing but since it's not the source of the infections, he wouldn't recommed it. Not with all of Brooke's other issues. The Infectious Disease doctors had her on daily shots of Neupogen for three days which brought her neutrophil levels normal. Yay. Once they stopped the shot for a day, the levels plummeted. So it was a lesson in what works and what doesn't. We learned that the daily shots she has been getting in Clovis aren't doing a thing. Like the Immunologist in Denver said, her body makes neutrophils but they are being destroyed, or held hostage by the spleen. Basically, two of Brooke's issues could be fixed IF...she weren't Brooke. If the spleen was removed, the Neutropenia would go away. If the tubing were removed from her leg, the blood clots would go away. But...neither is an option for Brooke because of all of her medical issues.

Mike took Brooke to see her Hematologist Friday and he is consulting with the ID doctor in Albq. for a course of treatment moving forward. They are looking at possibly giving her Neulasta (a longer acting form of Neupogen) twice a month. (You don't even want to know the cost of this shot! And I thought Neupogen was ridiculious!!) We've got to try to figure out a way to keep her body ahead of the infections. Please continue to pray for Brooke's body to heal. For additional methods of treating her problems. For strength, for guidance and for comfort.

Thank you all for the prayers!!!

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!

Denver - CT - Cardiology

Where to start??? Hmmmmm...we have our Denver appointment finally. June 16, 17 and 18. Immunology on the 16th where he will do allergy testing, Cardiology on the morning of the 17th and nothing else will be determined until we get there. It will be a very busy 3 days for sure!

Brooke had a CT scan Monday and it went remarkably well. She is such a trooper. I'm not even going to throw out all of the "stuff" we had to contend with; I'll just leave it at "it went remarkably well" and be done with it. YEA GENA!! I picked up the results on my lunch hour Tuesday and spent the next hour having one of the biggest melt-downs I've had in a LONG time. Not sure where all the hysteria came from but it never fails that it always happens at work and in front of my boss. Forget trying to put on the air of being tough...BLEW THAT LONG AGO! Ha. Long story short - it's ok. I'm ok. Everything we knew was wrong is still wrong, so no shockers there and the two new developments aren't anything to worry about according to the OB/GYN. Thank goodness for that! Mike mailed the disc to UNM today so they can look at the images. I sometimes just shake my head in disbelief of everything this little girl endures. And to do so with her happy disposition and a smile on her face. Never any complaints from her. How in the world does she do it? She is my hero!

I took Brooke's echo discs by UNM and Presby. Friday. Brooke's "former" cardiologist (he is a pediatric doctor, about to retire, and is at Presby.) has called me 3 times to discuss these findings. I love DR. BERMAN!!! LOVE-LOVE-LOVE his kind and caring ways. Praying that our new cardiologist at UNM will be the same! If Dr. Berman wasn't going to retire - I would seriously consider staying with him, but since everything we've ever done and all of our other doctors are at UNM --- it just makes sense to be there. You go where they know you. And I don't have enough energy to "start over" with a new hospital and group of doctors. We're currently waiting on an appt. with the new doctor at UNM.

10 days until our vacation...very much looking forward to spending time with Mike in such a beautiful place. We need to decompress. Please pray for Brooke. For her health and well-being while we're gone. Pray for solutions to the problems. For resolution. For strength for all of us.

Brooke Update / SONM

Hello. Just wanted to say that Brooke is doing fine. She's not in the hospital and not in criticial condition like one of the stories going around says. At the moment, she's laying on the couch doing an infusion that will get her ready to go to Albq. in a couple of hours. She's feeling good except for trying to get over a UTI she's had. Nothing is any different than it has been. She's considerably healthy-looking considering some of the things going on inside her body.

As I mentioned, we are leaving later this morning to go to Albq. I'm taking a copy of her Echocardiogram to her Cardiologist at Presbyterian and a copy to our doctors at UNM, who will have it read by a Cardiologist there. I talked to her Cardiologist Wednesday and he helped ease my mind a bit. He said there were several pieces of the results that were inconclusive so not to get worked up until another test can be done. I hope to have some sort of direction by Monday or Tuesday. I cannot figure out why the medical process is so slow? It blows my mind! Do you know, if I hadn't gone to the hospital on Monday and picked up the Echo test myself, that I most likely still wouldn't know the result? To date, NO ONE has called me regarding the results. NO ONE. I scanned them and sent them to our doctor in Albq. or else they might not have known? Then I faxed them to Brooke's Cardiologist. What is wrong with this picture? What happens when a person doesn't take charge of their own medical care? Maybe I should open a medical consultation business?

Tonight is opening ceremonies for Special Olympics New Mexico state track and field games. Brooke absolutely loves this! One of her most favorite people is a lady named Randy Mascorella. I've talked about her before. Brooke loves Randy and Randy loves Brooke. She's already asking for the "special O." This is where all of the athletes stand up to do a standing ovation but they put there arms in the shape of an O and scream OOOOOOOOOOOO. They love it and it's become a trademark of Randy's whenever Brooke see's her. We have to hunt her down throughout the course of the weekend to get OOOOOOOO's done. It's cute. Most of the Hankins family will be there, including three that have never gotten to attend before. I highly recommend everyone trying to see an event like this at least once in your life. It is incredible...too incredible to put into words. These people are true examples for how we should act! My mom will miss this year because Briana's wedding shower is tomorrow in Friona. Our thoughts will be with them there but I'm sure we'll be having fun in Albq. Brooke competes in the morning at 8:00 (tennis ball throw and 25 meter walk), then it's on to the Olympic Village at 10:00 for all of the goodies, and finally over to the Special Orchestra so Brooke can get her groove on. This is an awesome sight!

Please continue to pray for Brooke. For guidance and direction, knowledge and compassion for the doctors who will be taking care of her. And you might throw in a prayer for promptness on everyone's part so this momma doesn't have to use her "not so nice" voice with anyone. Ha. Love you all!

Raunchy Day!

Today has been rough. Brooke had an Echocardiogram done at PRMC on Friday and I got the test results today...not good. It shows either a clot or a Myxoma (benign tumor) in her heart. I'm waiting to hear from our doctors as to what the next steps will be. I assume we will be going to a Cardiologist for a second opinion. Thank goodness the Infectious Disease doctor is looking at EVERYTHING! No one else has even mentioned checking the heart until she came along. I think she is a true blessing for us!

Brooke has a CT Scan set for next Monday here in town (not related to the heart test). The ID doc feels the spot on the lung and streaks in the kidneys from previous CT scans need to be re-evaluated. Hooray...FINALLY! No tuberculosis - good test result with that one. We're still waiting to hear from Denver on our appt. there. I'm praying for May 26, 27 and 28; this way we could get it done after school ends and before we leave for vacation. Wouldn't it be nice to have everything taken care of PRIOR to going to paradise? Please-please-please!!

Brooke is standing here signing mommy on MY chin. Headache. Night-night. She wants me to take her to bed. Sweet girl. Please pray for us. It's hard to understand why things keep continously happening to Brooke, but we know God is in control and she is in His hands. We serve an awesome and compassionate God. I know He is hurting right along with us.

This-n-That

How in the world does Michelle Duggar do it? 19 kids...and still counting? With Baby Josie home, I can't imagine her anxiety. She seems to be such a kind, sweet, gentle person and patient. My thoughts and prayers to her and the rest of the family as they care for their preemie. The thought of having to keep a 20 person house germ-free scares me for them! What an inspiring family...yet I am content with my one precious child.

Brooke is doing well. She's still on a bowling kick but we think it's because she wants to go see her Special Olympic friends. She apparently has her "seasons" mixed up...state track meet is in two weeks in Albq., but please don't tell her...she'll drive us nuts asking every 2 minutes! We have borrowed the bowling ramp from Pat and Dave and plan on taking her bowling some evening. And the plan is to go to state games even though practice this year for Brooke has been sparce. She's had zero time with the team, which is what she's missing right now. She loves the state games and I think it is just what she needs to boost her people needs. She is so lonely sitting at this house!

On the healthfront, I'm in the process of scheduling some of the tests that the Infectious Disease doctor in Albq. wants done. 3 out of the 4 can be done locally so anything to save us a trip to Albq. has my vote. Our Denver trip is stuck somewhere in the "getting insurance approval" phase. You know how that goes! I did learn that when we go it will be for a Wednesday afternoon, Thursday and Friday. Looks like it may be June!

Hawaii is right around the corner. In fact, we'll be there a month from now! We're so excited. Please pray for continued good health for Brooke and for the grandparents who will be watching her (both sets). Pray that Mike and I are able to unwind and relax and enjoy the beautiful setting. Pray for Brooke not to worry too much about us, and not to drive everyone nuts asking where we are. Ha. I am so thankful for our support system that is allowing us to be able to make this trip so far from home.

Happy Mother's Day. What a truly blessed job it is!!

The Girl Knows What She Wants!

I'm in the computer room after supper working on a research paper and Brooke comes in with a basketball asking to go outside to play. I explained to her that it was windy and that she would have to play in the entry way instead. A few minutes later she shows up with my car keys wearing her yellow hat, with her yellow jacket on with the hood pulled over her hat, her sunglasses on and toting a bag full of clothes, books, musical toys, etc. I assume at this point that we ARE going somewhere, so I go put Brandi outside, turn off the lights, etc. Brooke is already in the mustang in the pitch black garage. The bag of goodies is in the back seat. She's ready to go. So we drive by the high school to see if we can spot daddy at the track meet. (We see him but he never see's us.) Then we cruise on over to Twin Cronnie for our nightly caffeine, and then slowly make our way back home. This girl knows what she wants and how to get her way!

She had a good day today with Nanny...slept, ate, played and barked orders only a grandmother will adhere to. Ha. She is pale and very tired lately, but overall doing ok since the Neupogen shot. Pray for no side effects!

Love you all!!!!

What's up with this blood?

We saw the Hematologist today for a follow-up from the Neupogen shot on the 15th. Mike took Brooke to do bloodwork on Monday so Dr. Curry would have the results for today's visit. Ugh! Double Ugh!!! The neutrophil levels are only slightly up. From 0.2 to 0.4, which is nowhere near normal. Guess this is all the $3,000 shot can do. Not very impressive. The other blood results looked about as dim. So...she got another Neupogen shot today and will take them monthly from this point forward to see if we can get her white blood count to come up. That would be nice!! Please pray for no side effects with this shot.

I walked out the door of the cancer center after Brooke's appointment and broke out in tears. It is so frustrating not to be able to help even when you know you're doing everything you can to try to make it better. It's hard to accept that sometimes there isn't anything at all you can do. Very frustrating!

I talked to Denver today and the insurance issues are trying to be dealt with at this point. Pray for resolution and a quick "ok" so we can go and get the visit done and over with. I'm ready to get these things underway so we can get closer to possibly having an answer. Wouldn't that be nice!!

Thank you for your prayers. Please keep them coming our way.

Blog Entry # 100!

WOW...this is my 100th blog. My hope is that each of you have enjoyed reading them half as much as I have enjoyed writing them! Thanks to my loyal followers for sticking with me. YOU GUYS ROCK!

Brooke continues to do well. She is finished with antibiotic #1 and has 3-4 days left on antibiotic #2. We feel two strong antibiotics really have helped "knock out" some of the issues she's been fighting. No reaction to the GCSF "Neupogen" shot...YAY! I had a call from Denver yesterday, called them back today...waiting. Wouldn't it be nice to go now and not have to deal with it after our big trip in June. Fingers crossed.

I really don't have much else to say. Two more weeks of school (ready to be done; not sure about the summer session yet), off to Vegas Sunday through Wednesday for work (yes...for work!), and counting down the weeks to Hawaii. Mike and I really starting to get excited. My goal is to get as caught up on sleep as possible between now and when we leave so I'm not completely worn out once we get there. We'll see how that goes.

I would like to make a special request: Please say a prayer for everyone tonight when you go to bed. Pray for people with cancer. For people struggling finacially. For addicts. For people fighting depression. For our government. For people struggling to find their way in life. Pray for a better you, a better me, and for peace. Pray for healing. For our blessings. For life. We have so much to be thankful for...so let's thank God!

Love you all -
Gena

No reaction to the shot - Denver

PRAYERS ANSWERED! Brooke has had no reaction to the GCSF shot this time! Thank you - thank you - thank you for the prayers. She had a really good weekend. She feels good. She looks good. She's acting totally silly. Life is good! We appreciate the kind words and all of the cards! Yes...you can come visit anytime as long as you're not sick. Brooke would love to see her friends!!

I talked to the people in Denver yesterday and the process for the appointments are underway. Someone "will be in touch with me within the next 3 weeks to set up the appointment." Geez. Guess we'll work this in around our vacation in June and Mike's week-long school in Albuquerque in June. At least if it's in June - he'll get to go with me! I really need his moral support for this one. Please pray for nice doctors. For only the necessary tests to be run. For understanding. For wisdom. For patience. For answers.

God bless all of you!

Got the Shot - Infection - Medical Records - Baby

Brooke got the GCSF (Neupogen) shot Thursday morning. So far so good. We're trying to keep ahead of the pain by continuing Tylenol every 4 hours. I expect tonight and tomorrow to be a little painful for her, but maybe not? I need to research other side effects of this shot; Brooke's appetite has been incredible lately. All she wants to do is eat!

The infection looks MUCH-MUCH-MUCH better. HOORAY! We finished one of the antibiotics today just to start another dose of the same thing. It is definitely working. She looks really good today. She's been happy and just smiles all the time. I love that! She is pale though. Very pale. Hoping her INR levels are down somewhat. Will test again Tuesday. I had a message on the machine from Denver, so I will call them back Monday so we can get the ball rolling on the appointment(s)there. I'm hoping for sooner versus later. I would love to get some of the medical yuk over with before we leave for vacation in June.

I spent hours today putting together a medical notebook for the doctors in Denver. I've made it as simple as it can be for them to locate anyting they need to know pertaining to Brooke over the past 3 years. And I underestimated the amount of records I had because I had to jump up to the next size of notebook. Tomorrow I will work on putting my own medical notebook together instead of carrying it in folders like I've been doing. Yep, it's come to this. It's easier to be prepared and organized than to have to dig for something or say "I have that but it's at home." The Denver notebook is impressive, if I may say so. And yes, I'm sure this is one of the reasons people find me intimidating. It's my daughter...I do what I need to do.

We just got to meet Hank IV. What a cute baby!! 18 pounds at 4 months...he's a very big baby! Absolutely beautiful!! Brooke was 21 pounds at 3 years! We all got to hold him and I took pictures of Brooke with him, daddy and grandpa. She loves all of the Hanks...they've always been so nice to her. It was a nice visit.

Thought we were finished!

Well...after seeing doctor's every day except for Sunday...I thought today would be our last visit for the week. Wrong. Saw the Hematologist today and he ordered the GCSF shot, which requires insurance approval, so we go back tomorrow morning to get the shot. MAYBE. UNM had left me a voicemail saying that they were really pushing Denver to see us in the next week or so and if that plays out, she can't have the shot. They need to see the blood in its normal state. So I called our nurse in Albq. and left her a message stating that Brooke is scheduled to get the shot at 10:30 manana so I need to know something by then. Hope she checked her messages! Not sure what tomorrow will hold?

Brooke had a great day with nanny. Have I mentioned lately how thankful we are to have her and ma and papa? We couldn't do this without the help and support from our family!! Brooke was happy and playful all day and is eating much better; however, she is pale and washed out looking. I'm sure she's a little anemic. When the blood levels get thin, bleeding is common and she spot bleeds which doesn't help matters. She also has several bruises that we're closely watching. The Hematologist lowered her Coumadin dose to 4 Mb through Monday and ordered an INR check for Tuesday. We're beginning to look like a Coumadin factory with our 2.5's, 5's and now 4's. So thankful the manufacturers color code the pills!

Thank you all for the continued prayers and words of encouragement. We are truly seeing and feeling the effects of your prayers. Please keep them coming our way. We serve an awesome and compassionate God...and when we hurt - He hurts. We are so thankful to have our Faith!!!

Good Doctor's Visits Yesterday - INR - One More Today

Our appointments went well yesterday. Brooke saw her PCP for a re-check and had a consult with the Infectious Disease doctor. The infection looks much better so no hospitalization was required. THANK YOU FOR THE PRAYERS!! Both doctors feel the area may be a Hematoma (localized swelling filled with blood) due to her blood being so thin lately. The ID doctor says he typically halves Coumadin dosing when his patients are on antibiotics because the two meds don't work well together. It has something to do with the liver. We had never been told this but shared it with our home health nurses and will share it with the Hematologist today at our appointment. The plan is to continue both antibiotics, bathe Brooke in a special antibacterial cleanser that was recommended and see the PCP again in two weeks. He is in contact with the Immunologist in Albq. I love the way he looks at the "full picture" and includes all of Brooke's doctor's in his plan. He's a super nice guy. In fact, Mike liked him so much that we've both decided to use him as our doctor as well. It's nice to find a doctor unafraid to consult with other doctors, able to swallow pride and admit when something is out of his expertise, and to be kind and gentle in the process. I thank God for him!

Brooke's INR was checked yesterday afternoon by our home health nurse and it's back up. 3.7. YIKES! She called the level in to all three doctors and the ID doctor made the call not to give meds last night. The Hematologist will have to determine the route we take from tonight forward. I feel Brooke will most likely get a Neupogen shot (GCSF). Both doctors yesterday agreed this is necessary and the ID doctor feels it is needed every 2-3 months for routine maintenance. The Immunologist agreed. So...we'll see what the Hema. says today. I do believe we're on the right road finally. Now if someone could just figure out what these spots are and how to make them go away!

Thank you for your continued prayers. I'll let you know how today's appointment goes.

Brooke had a good night

Brooke had another good night. No fever. Allergies are really bad this morning but no fever. The infection is looking better. THANK YOU GOD! Keep the prayers coming our way!!!

Second Opinion

Brooke seems to be feeling much better today. No fever last night and she slept well. She stayed with Ma and Papa today and was happy, playful, and got her appetite back. Praise God! Her infection looks a little better, but is not the "drastic" improvement I was hoping for overnight. I took her to see her PCP this afternoon and he has some valid concerns. Plan 1: He added another antibiotic to the one she's already taking and wants to see her in the morning. The Infectious Disease doctor here will also evaluate her. If she's not noticeably better, he will most likely admit her to the hospital and start her on IV antibiotics, which would be plan 2. Please pray that isn't necessary! Plan 3 is giving a shot of GCSF, which isn't pleasant but might help kick her immune system into high gear, at least temporarily. Plan 4 (and we're really praying this never has to happen) would involve sending her to Albq. to have a surgeon evaluate whether or not this cyst needs to be cut. Please pray this isn't the plan!!

Pray for healing, comfort, knowledge, guidance, patience and a solution. An answer would be acceptable. Ha. Your prayers are working because she looks and feels a LOT better today than she did yesterday. Thank you! Please keep up the good work!!

Bad Saturday for Brooke

Yesterday was awful. It started out fine but quickly went downhill. Brooke had one of her "unexplained shaking/blue nail" episodes yesterday morning. Her body gets really cold, then goosebumps appear, lots of shaking like she's cold, her nails turn blue, her breathing is unusual and she does a lot of yawning. Her oxygen stats were low (84) but climbed to 95 within a few minutes. We took her temp. and it was 102, even though she was cold. Once we got her calmed down with daddy holding her - the heat hit. She was hot! We did tylenol and let her sleep it off. This is the same thing she has done twice in the past after the salmonella. Nurses in the hospital witnessed it once and couldn't really figure out what was going on? It's a cross between a seizure and hyperventilating. Called the on-call home health nurse and she felt it was a febrile seizure.

So we decided to do her long infusion (4 hours) since we were off a few weeks due to the INR levels being so high. (Don't need to be putting two needles in a belly when the risk of bleeding is higher than normal.) Upon a trip to potty, I noticed something not right when I wiped her. Turns out she has another one of her spots that had become HUGE and infected practically overnight. We didn't even know she had a spot.It is awful looking! So I called the on-call home health nurse back and she suggested we take her to the ER once the infusion was over. We knew she needed to be on an antibiotic. We put Brooke in bed to finish the infusion and with about 30 minutes left to completion - she had another seizure. Then the fever hit. She doesn't do this with high fever typically. Whatever it is - it's scarey because of the blue nails, labored breathing and oxygen levels. Yep...I have my own oxometer...it helps me get through the big seizures. Best money I ever spent for peace of mind! I can watch her CO2 levels and heart rate with my machine and it's tiny...fits in my purse.

Long story short...we stopped the infusion and spent the next 3.5 hours in the ER. I have to admit...this ER experience was a good one thankfully. The doctor we saw (Dr. Colon from Puerto Rico) was very nice and thorough and he listened to us. They couldn't get an IV started (after 4 sticks) so we drank root beer instead. Ha. XRay was clear. Labs were messed up in the areas we know are messed up. He prescribed Cipro and told us to follow-up with our PCP. I should end the story here, but you have to hear the rest. Pharmacy X was closed at 7:30 when we left the ER so Brooke went without her medicine overnight. I called first thing this morning to see when they opened and was there in line. 45 minutes to fill it, but they didn't have the liquid so we got horse pills that we have to cut in half. Whatever you do...don't get sick after hours in Clovis!

The fever continues today so all Brooke has done is sleep. She's not eating much or drinking much. Fever is low grade but has zapped her of what little energy she usually has. The plan is to call our PCP tomorrow and try to get in for a second opinion. I will also call UNM to report this to our Immunologist and the Infectious Disease doctor. Please pray for healing. For the antibiotic to kick in and knock out the infection. For the fever to subside so Brooke gets her strength back. Pray for an answer to what these spots are! I noticed 3-4 new ones on her bottom this morning. Thank you all for your well wishes...we couldn't make our journey without you on our side!!!

Going to Denver

Dr. Clayton called Monday (the Immunologist) and he is referring Brooke to National Jewish Hospital in Denver. There is a team of doctors there that will evaluate Brooke and make treatment recommendations. The process of getting there will take some time (insurance, scheduling, accomodations, etc.), so the ball is now just starting to roll. Dr. Clayton said to expect at least 6-8 weeks for an appointment. That's what I figure will happen just because it's the most inconvenient time for us. We have Special Olympic state games in Albuquerque the 22nd of May and our trip to Hawaii the first week of June. Neither will be interferred with...they'll have to work around those two times. I really hope this will occur in June so Mike can go with me.

Please pray for guidance for Dr. Clayton as he makes the arrangements. Pray for us to be put with a knowledgable, compassionate team of doctors that will listen to us, be open to what we are saying, and will take some of the existing results and not feel the need to have to start from scratch. Our biggest fear is having to put Brooke through a bunch more tests that cause pain. I pray for doctors without egos. I pray that this team is trusting of what has already been done and will only do tests that are 100% necessary and not treat Brooke like a circus act. (Yes, it happens. We've had doctors wanting to cut a section of her skin out just to look at it under the microscope. NO!) I pray that everyone that comes in contact with us has an understanding with the trauma this places on Brooke and the anxiety levels of all of us. And please pray for strength, patience and tolerance on my behalf.

I'll keep you posted as I know more.

Pray for the Miners

Please pray for the miners and their families in West Virginia. What a tragedy! Both of Mike's grandfathers were miners in Virginia and a lot of his distant family worked in the mines. Mining is a big part of the Hankins and Lowe family history. I can't imagine the impact something like this has on a small community. Please pray for comfort for all of these people.

Doing OK - Mike Home - Where is Brooke

Brooke had a good weekend - thank goodness. It was a little scarey with her INR sitting at 4.5! That's seriously thin blood. Any cut, scrape or a bloody nose could've been super serious. I crammed her full of spinach and broccoli and Pistachio pudding...all the things she loves but usually can't have due to their vitamin K. (Vitamin K is a clotting agent, so people on blood thinners have to watch their intake of foods with vitamin K.) The home health nurse comes tomorrow to re-check her blood. Hopefully the INR level is substantially lower! She went back on her Coumadin last night, so we'll see how it goes. She seems to feel better finally. No fever for about 3 days now, so maybe whatever it was she had has worked its course. Albq. doctors are supposed to call next week with the game plan.

Mike got home mid-afternoon today. YAY! He's been in Austin for an invitational track meet since Thursday...he loved Austin. The bluebonnets were in bloom and he even stopped by the side of the road and picked me two. How sweet is that! I've been to Austin twice, but never in the spring when the bluebonnets are blooming. I would love to see that! We're glad he's home safe and sound.(I knew he'd eventually grow to love my state!)

Brooke was outside when Mike was mowing earlier and he lost her. That's a bad feeling for sure. She had gotten in her car all by herself and was just sitting there, in the garage, with the door closed. How funny is that? So we went for a ride. She cracks us up!

Thank you for your continued prayers!

UNM Appointments - Denver or Houston - Blood too thin - Feeling Bad

We spent Wednesday morning at UNM. Brooke saw her Immunologist, Dr. Clayton, who is the sweetest, kindest man. I just love him and his caring bedside manner. It's refreshing. He had definitely done some research on Brooke's issues before our appointment and had his game plan laid out. He took a lot of blood, most of which had to be sent out of state within x number of hours in order to remain viable. He has some thoughts as to what "might" be causing the high IgM level but he wants the blood work to tell the tale. He didn't know what to think of her spots so he called in an Infectious Disease doctor to evaluate Brooke. Enter - Dr. Martha Muller. WHAT A GODSEND! She seems to be the person we've all be praying for! She's kind, gentle and interested in everything going on. Guess what? She is totally smitten with Neutropenia! Take it on!!! Most doctors run the other direction, but she was like a breath of fresh air. She has some thoughts on various things she saw on Brooke and/or things she briefly read in her chart prior to walking in the room and she wants to do some more reading up on Brooke before she lays out her game plan. She explained things in a way we've never had them explained before and it made sense. I feel so relieved with the visit and I feel we are finally on the right path. Thank you God for putting Dr. Muller in our lives and for Dr. Clayton not giving up on finding the answers we need.

Dr. Clayton will be referring us either to Denver or Houston to see a team of doctors who will evaluate Brooke. While I hate the thought of having to go so far and possibly having to put Brooke through more tests, the possibilities excite me. A second opinion (overall) may be what we need. UNM is pretty much the only place that has ever treated Brooke, with the exception to UMC in Lubbock when she was first born. Please pray for direction for Dr. Clayton as he determines which location will best suit Brooke and her needs.

Can someone please tell me where the switch is? You know...the one that turns off the bad stuff? Enough already!! The home health nurse came yesterday to take Brooke's monthly INR reading. A month ago it was 2.2, which is where they like to see it, but is considerably higher than where Brooke has been in the past. We all felt the INR should've been done sooner than a month later, but we lost that battle. So the results yesterday show her at 4.5. Very thin blood and extremely dangerous. This is so thin that a cut could be tragic. So, no Coumadin last night or tonight and back on the normal dose Saturday and Sunday and a recheck Monday. Brooke is liking it in the sense that we're cramming spinach down her which is a no-no most days. When your blood is thick, you avoid foods with vitamin K because it's a clotting agent and you don't want clotting. With an INR of 4.5 - YOU WANT CLOTTING! So vitamin K is our best friend temporarily. Sad thing is, Brooke doesn't understand any of it. Why mom won't let her eat this or that and now all of a sudden she can have as much of anything she wants. Very confusing to a little girl.

Brooke has felt bad since last Friday. Fever that comes and goes has to be monitored very closely. She seems to be past the 101's and 102's, but the 99's are still very frequent. She's been on an antibiotic for over a week for a skin infection, yet it doesn't seem to be kicking whatever "bug" she has. Maybe the fever is another symptom? Please pray for Brooke. For healing. For comfort. For direction from the doctors. For Mike and I as we tend to her needs.

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.

Work - School - Prayers - Name that Computer

Hello all. Yes, I'm still around. It's been a while since I posted and for that I apologize. No excuse except for being busy. Did you hear or read about ENMR•Plateau being awarded stimulus money for Broadband projects? Very cool!! There's a lot of work that goes into putting an Broadband Stimulus application together, especially when there is such a small window in which to get it done. WAY TO GO PLATEAU! You all know who you are and you make me proud! This is a HUGE project and will require a lot of work over the next 3 years. Lots going on at work! I get tired just thinking about it, but it is awfully exciting.

I'm in another semester at Wayland now and taking two classes. It' s hard. I haven't taken two in a while and forgot how tired they make you. Working all day then going straight to class and listening to 4 hours worth of lecture makes for a very long day!! And it's just week 1 of 12. OH NO!! 5 more after I finish these two...SWEET! I had signed up for an online class at CCC but dropped it on day one after learning that it wouldn't count towards my degree. I'm going after the credits that are left and will try to get this thing done once and for all. I'm soooooooo ready!!!

Brooke is doing well. She's been fairly healthy this winter considering what everyone else has had. We seem to struggle more with runney noses and bumps that don't heal. It seems like she really struggles to keep one step ahead of healthy. We got some bad news yesterday regarding some blood tests she had done the end of January. So, today we did a repeat test and added an additional blood protein test to ensure the results were correct and not lab error. I can either keep it simple and say "pray for answers for the added blood issues" or I could try to explain what they are. I think I'll take a stab at my blood protein explanation. Here goes: Brooke's immune deficiency is with IGG, but there are other proteins in the blood, such as IGE, IGA, IGM and IGD. The IGM is showing to be very high. Very! It was fairly high a year ago, but was never addressed due to the neutropenia and other issues she had at the time. Now it's 4 times higher than it was then and without explanation. My research today showed the usual 'C' word, inflamation issues, auto immune problems, etc. so I quickly decided to stop researching. No need to go borrowing trouble! We'll see what the latest tests show when they come back and go from there. We have an appointment with our Hematologist in Albq. on 3-11 so he can start following these blood issues again. It's needed. We need someone to monitor everything; the blood, the liver, the spleen, etc. Please pray for kind, caring people. For knowledge. For confidence. And for humility.

On a lighter note...we got a new computer and with the lightening fast fiber Internet from Plateau, all I can say is WOW! (Did that sound like a commercial or what? Ha.) I have no words for how things are today versus this time last week. I love things that go fast (that includes Brooke's car). Our other computer was about to be thrown in the street and ran over multiple times by both Mike and myself. I haven't named the new girl yet but can honestly say that Big Bertha is not missed in the least!! If anyone has any thoughts on what to name this beast...please share. I believe in naming my cars and computers...that way I know whose name to yell when I get mad. Ha.