Where has December Gone - 5 Females and Mike

I blinked and it was all over. My head is still reeling from the fastest month I've ever seen. Does it seem like Christmas has already come and gone? WOW. Time really does fly!! Our holidays were great. We celebrated with my family the Saturday before Christmas and had a really fun time. Brooke got more fire gear (another helmet) so everyone put helmets on and posed with hatchets, fire extinguishers, her badge, etc. I have some really fun pictures and we shared a lot of laughs. We spent Christmas Eve and Christmas Day in Red River with all of the Hankins crew. That was nice! It took us 5 hours and 15 minutes to get there due to the snow and ice, but it was worth it. What a beautiful place. We had a great time and truly enjoyed all being together in such a fabulous setting. As always, it was nice getting to spend time with the "babies" as Brooke calls them...Colton and Jonas (our great-nephews). They are 2 and almost 3, so not babies. I found myself tearey eyed once while watching them play. Confession...it hurts me that I will never get to be a grandmother. As much as I try not to let it bother me...at times, it does. So I spoil them as much as possible and buy them all of the obnoxious noise-making toys that I can find. That's what grandparents do, right??

We are dog-sitting our niece's dog and her boyfriends dog. They're our cousin-dogs. Right now, Mike is at the holiday tournament, Brooke is in her room watching a movie she got for Christmas and I have no idea where the 3 dogs are? That's a little scarey! They're sweet dogs. Maddy is an Australian Shepard and super smart. Chloe is half German Shepard and half Lab and is a little timid. It's been good for Brandi to learn to "share" her family and her things. She's suprised us with her protectiveness of us and everything we have. She's like Brooke in that regard and likes things a certain way all the time. Chloe and Maddy are good girls and have been hardly any trouble at all. Besides, I tell Mike he can tell everyone he has 5 women in his life right now. Ha. And all 5 shed really bad. He ran the vacuum today which seems like a mute point. Anyway, the two cousin-dogs leave tomorrow, so I'm sure Brandi will sleep all day. I've been proud of our little Alpha Dog! And I thought she was a pushover. YOU GO GIRL! Would it be insensitive, vulgar or disgusing to blog that Maddy just let a silent one that has me gagging. Ugh. I hate dog farts!! (Sorry Dave, your girl may be sweet but she sure is RANK!)

I have to get some air. Night all!

The Silent Angel

I lost a dear friend yesterday. Joyce Davis was one of my lifelines for almost 20 years. Her cards and uplifting words helped sustain me during tough times. Each card would hold a balloon for Brooke, which brought a smile to the face of a sick little girl. I will forever be grateful to Joyce and her outreach and I will definitely miss her cards.

People like Joyce are rare; they are silent angels who prefer doing for others without recognition. Her ministry was done in so many ways; whether by slipping in and cleaning the kitchen at church, helping with Vacation Bible School, taking food to the sick, mending clothes for the Hope Center, or by her cards. I am thankful I had the opportunity to tell Joyce just how much her outreach meant to me. I told her that what she did made a difference. She reached out to others and touched their lives in so many ways and the world will be a sadder place without her. Our loss is Heaven's gain. Our prayers continue to go out to the family. May they find comfort in their pain and healing with time.

Thank you my dear friend for being a Christian example for all of us younger women to follow. Rest in Peace.

Readers - Car - Rudolph - TSO

I've been bad. I haven't been faithful to my blogging duties. Sorry. I have no excuses worthy of the crime, but I will try to do better. I appreciate the 4 people who in one-weeks time made me realize why it is that I blog. It's nice to know that people read what I have to say and that some even like it. :) So thank you to all of my faithful readers. I appreciate you taking time out of your busy lives to listen to me ramble on about mine.

Let's see...where to start?? The Mustang. I made the mistake a couple days ago of suggesting we take my car to go eat - NOT HAPPENING! Brooke gave us the "Ain't no way" sign and squawked something at me. We took her car. When the weather is nice and the Hankins trio is going somewhere in town...Little Miss Sunshine is the only mode of transportation these days. And yes, I am still riding in the back seat. While it might not be that easy for me to get out of the car...it's a heck of a lot easier than it is trying to get her in and out of the back seat. She does very well getting in and out of the front seat thankfully and she still laughs as we drive down the road. This car did exactly what I had hoped it would...it makes her happy. Or should I say "HAPPIER?" The car got it's first bath from us today and she really cleans up nicely. Mike got the BROOKE license plate put on the front so there's no mistaking whose car it is. Not that Brooke would let us forget it. She is very proud of her car. And we're very happy to be able to have done this for her. It's very much worth it, and I can't think of anyone more deserving of a sporty yellow car than Brooke.

Not sure what's up with the Rudolph obsession this year? We can't figure this one out? Usually the hefty guy in the red suit is #1, but Rudolph and his red nose have Brooke entranced this holiday season. Everything is Rudolph. I bought her the cutest stuffed Frosty the Snowman that sings but she won't have anything to do with him? Hmmmmm....???

We took Brooke to Lubbock Thursday night to see TSO...this was her 3rd time seeing them. Once we finally managed to find a parking lot and a parking space in a parking lot (long story - don't ask)we really enjoyed the show. And we were only 15 minutes late! For any of you who haven't heard of the Trans Siberian Orchestra,or had the priveledge to see them in concert, you've got to check them out. WOW. They are incredible. Very much worth the money to see!!

The Holidays

Brooke loves Christmas so we try to make it as festive and magical as we possibly can. Last Christmas was rough...we were living in a rental house preparing to move into our new home, which happened on Christmas night. So all of the glitz and glamour we usually provide - was sitting in boxes in the storage unit. To help accomodate, we bought a 6 foot tree, had 6-7 ornaments that people had given Brooke throughout the year, and I bought some door clings at Dollar Tree. Pretty sad. It was such a stressful time to be packing and moving! This year; however, hopefully we've made up for "missing" last year. We've got 5 trees up: a 9 footer in the living room that took us 5 hours to complete, the 6 foot tree from last year that now sits proudly in Brooke's room holding all of her Disney and fire truck ornaments, the cute little silver one in the kitchen, the 3 foot one in the entry way that used to hold the Disney ornaments, and the little tiny one in the hall that was given to me years ago by a friend. There's the annoying music box that plays 36 songs, the piano-playing snowman, all of the snowmen collection, the story-book reading Santa, the flashing Santa jar in Brooke's bathroom, and all of the many, many, many Christmas song playing gizmo's that Brooke loves so well. The only thing missing is HO-HO, our big, singing, hip-swinging Santa. Mike says he's in the garage but I have yet to see him. There is a problem. Two years ago when Mike was "assembling" HO-HO, Brooke was curiously watching. HO-HO is spring activated and his head tucks up underneath his body. He goes from 5 foot to 3 foot just by smashing his body down. Anyway...Mike pops him and his body stands up and his head rolls out by Brooke. She was completely traumatized. It was awful. She just stood staring at him for about 5 days following the incident. And she has spent so much time holding his hands while he dances that he now needs a complete hip replacement. He's in very sad shape, but we love our HO-HO. The new rule is that Brooke can't be present when Mike is "springing" him into shape. Ha.It's so much fun. We get to see Christmas through the eyes of a child each and every year! How precious is that!

I'm a little hesitant to say what I'm about to say, because Mike has always prided himself in us being the "blackest" house on the block, but the plan is to put up lights on the outside of the Hankins house for Brooke. I KNOW...YOU'LL BELIEVE IT WHEN YOU SEE IT. Me too! But I know that after spending over $300 last Friday purchasing the necessary equipment, and him calling whoever it is that does this for people on the side...I think it may be a safe assumption to say that it actually might happen. I'll keep you posted!

Lastly, after showing me, showing Mike, showing me again, and showing Mike again...Brooke finally brought the phone to me and told me to call PB Teen to order the kitchen set she's been bugging us for. Does anyone have $897 we can borrow and a place to store this monstrosity? Ha. Why is it that she doesn't like small, foldable, portable toys? I've got a nice piece of Christmas stationary out and we're about to write a letter to Santa. I will BEG him NOT to bring this! Where in the world would we put it? And $897? Shhhhhh...don't let Ma or Papa know she wants this!! You know how grandparents are!

Have a great evening!

Special Olympic Bowling - The Dance - Sledding at White Sands

Friday night we drove to Ruidoso, spent the night and drove to Las Cruces Saturday morning so Brooke could bowl at the Special Olympic state bowling meet (for the Southern side of the state). This has gotten so big over the past 5 years that the state has had to be split in half to accomodate all of the bowlers. I believe there are around 800 now. I have to admit, neither Mike nor I were very excited about making this trip having been in San Antonio last weekend. My mom went with us like she usually does, which is a big help. About halfway through Brooke's second game, she started to melt so I told her if she would bowl strikes, we could finish quicker and go eat. She managed to bowl 3 strikes in a row. Ha! Go figure! She bowled a 287 total (two games) and took the gold medal. That was exciting.

Saturday night was the traditional SONM dance, and most definitely the highlight of Brooke's trip (as it always is). She is a dancing machine! She had a great time, and so did we as we watched her enjoy life. Special people know how to have a good time! I wish everyone could witness that!! Brooke is really in her element at SO sporting events. It's nice to be around people who don't see the superficial things that other people notice. There are a thousand lessons to be learned at a SO event.

This morning we made our yearly stop at White Sands to sled. What a great time! If you've never done it...you need to! It's a blast! Brooke won't sled but she will spin and let us push her around the parking lot. My back is screaming about it now! Mom and I made a few standard runs before we got brave and finally went down the "BIG" hill on our stomachs. OUCH.

I thank God every day for Brooke and for other special people like her. They are put on this earth to teach us how we are supposed to be.

Little Miss Sunshine

Little Miss Sunshine is the name of the yellow Mustang. Brooke LOVES the car. It is so much nicer than we ever imagined!!! It's a super clean car. Brooke was a little unsure at first; like she was in shock. I think she thought it was borrowed or temporary or something? Sunday night she took Mike into the garage and pointed to my Toyota and signed "mom", pointed to Mike's pickup and signed "dad" and pointed to the yellow car and then to herself. It's her car - we keep telling her that. Tonight she wanted to ride in the backseat. Have you ever seen the backseat in a Mustang? There's not much of one...but she insisted. So after 4 trys by mom and a couple of split-looking moves...we called dad over to help. He managed to get her in and she loved it. She giggled all the way down the street. And then we had to figure out how to get her out. And then back in again after supper, and then to ma's to take papa for a ride...at which time we left her in the backseat so we wouldn't have to struggle with it again. We're learning! I usually ride in the backseat because it's easier to get me in and out than her, but she knows the backseat is usually her domain, so she wanted to give it a try.

Mike and I have both been asked, "Can Brooke drive?" No, she can't. She can't ride a bicyle either but she has one that she rides with me. She can't skate but she's been skating. She can't swim but she's played in the water. Let me explain...just because she can't doesn't mean she shouldn't. We do what we do FOR Brooke and BECAUSE of Brooke. I said when she was baby that I wanted her to have as normal a life as possible. And we have been blessed enough to finally make a few of our dreams for her come true. Life is so fragile...it's up to us to make the most of it. Something as simple as yellow makes her happy. And I love seeing her smile!

She is OUR Little Miss Sunshine!!

Frightening Day

Today was rough. It started with me noticing that Brooke's right breast was swollen. This is a new one...we've never seen this before. There were no other symptoms, other than it being swollen. I called the Gyn. and the nurse and I started going down the list of possibilities. No to caffeine, no to a sudden growth spurt, and no to this or that so I finally told her that Brooke is neutropenic. If there's any infection - it's got to be caught and treated. Plus, there are two lymph nodes (one in the right shoulder area) that are questionable, so I didn't feel the swollen breast could simply be written off. Not with Brooke's past. She agreed and recommended that we see the Hematologist. So our new doctor (the one we just got established with two days ago) saw us this afternoon. He doesn't think there is a problem, but told me to watch her closely just in case. Hmmmm...the mystery remains. It's not as swollen now as it was this morning, which is good. Relief. Many things ran through my mind today...most of which I wouldn't have even remotely considered thinking about a year ago. It's amazing how quickly life can change. How the events and situations we endure cause our minds to shift in different directions. Mike and I will have to be on the "look out" for cancery-type things from now on. Brooke's at higher risk. That's just how it is. We won't live in fear or let the possibility of "what might be" deter us from living what really is. We chose to live in the here and the now. Most importantly...we place it all in God's hands. He is the ultimate healer. This is his story, and we are letting him tell it - not us.

Please pray for Brooke as she endures this new issue. Pray for continued health and happiness and security. I ask for a special prayer for my mom as she keeps Brooke this weekend. I ask that everything go as smoothly as possible and that they enjoy their special time together. Pray for safety for Mike and I as we fly to San Antonio Friday and drive home Sunday.

Thank you for our veterans!!! Thank you for protecting our freedom and for representing this fine country so well. God Bless you all!!! This is YOUR day.

Hugs, Kisses, Zerburts and a YELLOW MUSTANG!

Life at the Hankins house pretty much consists of three staples: Hugs, kisses and/or zerburts. I just tried looking zerburt up on dictionary.com to see how to spell it and I guess it's not actually a word? So sad! Brooke loves to give them; they make her laugh. The silly girl is sitting in the living room in her High School Musical pj's, wearing a sweat band on her forehead and asking for progresso soup from an ad in the newspaper. She just handed Mike the phone and told him to call for soup. Now she's in the computer room with me handing me the ad, signing telephone. She's very persistent. "MMMMMMMMMM" she says. Mike just told me that Brooke is now trying to call for the soup herself. He's trying to explain to her that you "can't call for soup." Ha. She cracks me up!

We cleaned out the garage today...making room for a surprise for Brooke. Anyone who know's us well, knows that we've always wanted to get Brooke a yellow car. Not just any car...a screaming yellow Mustang. It looks like it's about to happen. We found one online in San Antonio, so Mike and I are flying there next Friday and will be driving it home on Sunday. So exciting! We can't wait to see her face when we pull up in it. Nothing makes Brooke any happier than yellow cars. (Other than fire trucks, and we really can't afford to go that route.) This car is a 2006 model, low mileage, super clean...and a GT. We're really looking forward to it and using it for our multi-weekly "soda pop" excursions. This is Brooke's car and she deserves it!!! Please pray for our safety as we bring the car home.

Brooke's Hematology appointment got moved to 11:00 tomorrow. Pray for a productive visit and that this doctor can meet Brooke's health care needs locally. What a blessing that would be! Pray for continued protection over Brooke. She and I are both struggling a little right now with allergies...it's like we're both on the "edge." I'm doing everything in my power to stay a few steps ahead of it so we don't get sick.

We serve an awesome God. We are so thankful for our many blessings...most specifically - Brooke. May you all have a blessed week!

A Little of This...A Little of That

Has it been a week since I last posted something? Where does the time go? Please bear with me until the 2nd week of December...I start class at Wayland next week and it and my other for credit class at CCC intersect for about 6 weeks. YIKES! I'll be doing the Monday, Tuesday, Thursday thing for a while.

Brooke is doing well. Her INR went down Thursday (1.7). I give up trying to find any possible explanation for Coumadin levels. Who knows??? It's totally crazy. Brooke feels well, so that's what matters. The right thigh is still big, but I'm not sure that will ever go down in size? Her entire right leg remained bigger than the left after the first clot. Clots can be as challenging and puzzling as Coumadin levels. I know what I don't want to be when I grow up: A HEMATOLOGIST! Ugh. I did finally get an appointment with the new Hematologist in town...yay, I think it's on the 11th. Such a process required for everything!

Brooke dressed herself yesterday. Dark gray Special Olympic bowling shirt, neon pink shorts and her hot pink/orange/lime green/turquoise furry socks that come up to her knees. She was a sight! Hey...at least she tried. And she did it on her own...we didn't ask her to get dressed. We left her in her unique and colorful outfit. That's the beauty of it...in Brooke's world - things like matching are insignificant. She must have got that from her dad. He tends to have "matching" issues where she is concerned, yet is a sharp dresser himself. I, on the other hand, have to be matching or if drives me over the edge. I'm "too" matching if there's such a thing. OCD maybe? Ha.

Our other daughter, Brandi - the Golden Retreiver, had a seizure or something like it Thursday night. It was odd. She always dreams and makes lots of noises, but this time it was different. She kept swallowing like she had cotton mouth. I finally got so annoyed at her sounds that I got up and turned on the light. I thought maybe she was sick so I was trying to get her outside. She couldn't move...all 4 legs were paralyzed for about 1 minute. It was awful. When she finally regained use of her legs - she was disoriented for about 5 minutes. She reminded me of Brooke when she comes out of a grand mal seizure. The look in her eyes was different and she was incoherent or something. Anyway, I took her to the vet Friday morning and $243 later - no clue. Maybe seizure? Maybe I woke her from REM sleep? She has another ear infection that we're aggresively treating. This dog and her ear infections...ugh! We changed her dog food up a little and switched to a lamb and rice formula...we'll see if that helps? She tends to have some allergies, so I'm giving her a benadryl every night before bed. That's made her sleeping a lot less noisy! Yay for me!! I don't get it? A dog and a child with allergy problems, chronic ear infections, clingy-issues, and an obsessive need to please the parents. Go figure!

Have a great week everyone! Thanks for the continued prayers...they're working. All is well at the Hankins House.

Life is God's Novel...Let Him Write It

My mom bought a picture today with that saying on it and I liked it so much I wanted to share it with you. It pretty much says it all! It's a nice thought to "ponder on."

Brooke's INR was 1.8 yesterday, so her blood levels are slowly getting there. (2.0 is the target.) She remains on 5 Mg Coumadin each day with no noticeable side effects anymore. She still complains of her stomach hurting and has occasional bowel issues, but those things could be attributed to any number of things. It's almost impossible to pin an ailment down to one certain affliction with Brooke. She's our little puzzle. Overall - she's doing good...Praise God. I pray daily for protection for her and for us as we care for her. It's so scary right now with all of the flu bugs and other germs floating around.

Brooke has discovered painting. It started with pumpkin painting, then painting on an easel on paper and tonight - she did her first canvas picture. Painting is her new love. She's painted every night for the past 4 nights now and keeps asking to do more. She's actually very meticulious and it's fun to watch the serious expressions on her face as she concentrates on her brush strokes. She's cute! Who knows...maybe we have a Picasso in the making? One of these days I'll post some of the pictures I took. Precious!! (a Briana word)

Brooke had a busy week! She started her home-bound schooling this week and really enjoyed it. Her teacher, Mrs. Madrid, comes to the house Tuesdays and Thursdays for an hour. They read and she brings "work" for Brooke to do. The next time you eat at Taco Box and get your nice little white bag with the napkin inside and the utensils...think of Brooke. She helps put those together. She also helps glue coupons on Pizza Hut boxes. She's a busy little helper!! It's good for her plus it keeps her mind busy and gives her something to look forward to each week. Brooke also decorated Halloween cookies this week and went to bowling practice Thursday night.

Have I told you all lately how much I appreciate the kind words about the blog? Thanks!!! I love this blog...and what it represents. My hope and prayer is that each of you feel you know Brooke more now than you did before. I want you to know all aspects of this wonderful child...not just the sick times. She is incredible in so many ways and I feel God wants me to share that with the world. We are all blessed by Brooke!

Sponge - Yellow Cake

I didn't blog this week because I didn't have anything to say. That's a first! I ALWAYS have plenty to say. What's wrong with me?? Anyway, Brooke is doing well. Her INR was 1.7 yesterday, so it's slowly coming up. She remains on 5 Mg of Coumadin daily and lately, she's done ok on that dose. We are doing everything we can think of to keep her healthy. It's scary! So many people either have the flu or sinus issues right now. I started her on vitamin D3 today...it's supposed to help protect the body, and she actually likes the taste of the pill. I keep praying that none of us get sick...especially Brooke.

Brooke is so amusing! She was watching a commercial on TV today about birds on an island not being able to fly. One bird sees a jet and starts flapping his wings trying to fly. Brooke sat in the floor imitating the bird. While ago, she tried chest compressions on Mike in the recliner. Not just beating on his chest, but the actions of someone who has been through CPR training. Neither of us can figure out where she saw CPR being done unless it was on an episode of Emergency. See...I knew buying all 5 seasons of Emergency would be educational for my child! Ha. Brooke's brain is like a sponge...sometimes it appears to be wet and she is more alert and understanding of things going on around her. When it's like this - she picks up things so quickly and is more alert and attentive. And then at times it seems dry and things don't soak in as easily. It's very intersting.

We had another birthday party tonight complete with a bright yellow cake from Albertsons. My birthday is Tuesday, so this was a party for me. Yay! Brooke loves our birthday parties! We had fun.

Please pray for continued health, a safe and nurturing environment and added protection from the many germs floating around right now.

251 Wasn't Good Enough

Forget 251...our little semi pro bowled a 291 Saturday in Roswell during competition! And yes, she got her first place YELLOW ribbon. :) No boring blue or red for my baby...only yellow!! I'm still stunned at how well she did; I only wish she could've hit 300! She was a bowling machine! The ramp is incredible! Dave is awesome! It's yellow, purple and blue for the three girl bowlers, and it makes things so much easier! It's heavier so it doesn't move when the ball hits the bottom, and that makes a world of difference. For those of you who have never been around ramp bowling...it's not easy. There's an art to mastering it and my husband is working on his ramp bowling PhD. He's determined to figure it out. Aligning the ramp, position of the bowlers body, and their hand position all makes it challenging. Brooke sometimes gets a right curve put on her ball, and so Mike will adjust the ramp for that and then she'll throw a left turn at him. And bowlers using a ball with holes poses a new set of challenges. The holes can throw the ball this way or that way. Brooke (and most of the other bowlers who have their own balls) use a 12 pound ball with no holes. She typically bowls around 6 mph, but on bowls faster than that she has a better shot of knocking down more pins. I learned Saturday (from the ramp master himself) that you don't want to hit the pins dead on. That causes a split, which is almost impossible for our bowlers to hit. He explained to me exactly where the ball needs to hit for maximum pins to fall. OK. I trust him. I just acted as photogragher,cheerleader and germ-control. The yellow Tweety Bird ball even got wiped down with GermX. Nothing is safe when I'm around. We had a really nice day, and I'm so thankful she was able to go and spend time around her friends. We go to the state bowling games in Las Cruces the week prior to Thanksgiving. That's a fun trip!!!

Doctors Appt. - Bowling

Brooke had her first appointment with her new primary care doctor yesterday and he was great. He is very kind, compassionate and attentive. He sat for 30+ minutes and listened to me tell him all about Brooke. He was so nice. I look forward to him getting to know Brooke. Thank you God for putting him in our path!

Brooke bowled a 251 last night (two games)...WOW! Papa cleaned her bowling ball yesterday and between that and bowling on a new (heavier) ramp...she rocked! Thanks Dave! We were asked what color ne needed to paint it and it came back as purple for Sarah, yellow for Brooke and blue for Emma. Can't wait to see it!! It's going to look interesting!! We go to Roswell tomorrow for area Special Olympics bowling. I have mixed feelings...it's by no means the place Brooke really needs to be going right now with so many bugs out there, but it's one of only four events she competes in each year and I can't take it from her. I guess it's a risk we are just going to have to take. She needs her friends right now! I've got my baby can of Lysol packed in the bag and a fresh, new bottle of Germ X. :) Sometimes you just have to go out on a limb and pray for the best.

Please God...protect Brooke from germs. Keep her safe. Amen.

Back in the Bubble - New Doctor - Coumadin

As of today...Brooke is finished with school for a while (at least until the spring). This was supposed to have been her last week to attend, but she woke up early this morning with more congestion, so we made the decision to move it up a week. We're done fighting it...it's time to put her back in her bubble for a while and see if we can get her well again. There's so much flu already popping up and it's not worth chancing it. There is nothing more important than Brooke's health, especially during the winter months. Please pray that she does as well this go around as she did last winter.

Thursday is our appointment with the Internal Medicine doctor here in town. FINALLY! I'll be so relieved to finally get on board with the new doctor. I pray he is kind, compassionate, knowledgeable and understanding with Brooke and her needs. Oh, and did I mention...unafraid of a challenge? That would be nice! I prayed long and hard about this and feel God pointed us in his direction.

Brooke's INR levels remain challenging...she was 1.5 today. Up and down. Up and down. That seems to be the name of the Coumadin game. It's frustrating, but I've turned it all over to God. There's no need for me to worry about it since it's completely out of my control.

Brooke continues to fight her battles. She's struggled with this sinus/allergy/cough junk for a solid month now and ever time we think we have it licked (yesterday!) it comes back with a vengence. Hopefully, staying at home and getting more rest and less exposure to people will help her get rid of it and stay healthy during the flu months. Please pray for healing. For good health. For the ability for her to fight infection. And always...for guidance for Mike and I as we care for her. So much of this is doing what you believe is the right thing...there is no instruction manual for this child nor any website to ask for advice. Thank goodness God is a prayer away!! I lean on Him pretty heavily these days.

Frustrating Day - In the Background

Friends...I warn you...if you're needing a happy, feel-good blog entry...SKIP THIS ONE! Today was challenging. Brooke had her INR done this afternoon and it's back down to 1.4. What is up with these levels? Our sweet nurse calls the doctor to give him the results and as it turns out...he's on vacation. She did talk to him and he was frustrated with the levels. It seems he totally forgot to see that Brooke was taken care of during his absence. That hurt. He put Brooke back on 5 days of the big, bad Coumadin dose and 2 days of the lesser dose. The big dose for that many days scares me because that's what she was on last week when her INR spiked to 3.7. Granted, she was on Lovenox at the same time as the big dose so maybe (hopefully!) this won't tear her stomach up like it did last week. I wouldn't mind the big dose for that many days if I knew there was a check point somewhere in the middle of the week, but there's not. He ordered her next INR to be done a week from Monday. Am I missing something here? Coumadin is the most unpredictable drug there is. Please God...watch over Brooke and help me know if there's a problem I need to be aware of!!!

Some of the stress in our life comes from having to deal with injustices and the frustration of not understanding why they have to be there in the first place. Why is it be harder to get Brooke medical care and why should we have to drive 4 hours to receive it? Why is everything getting more complicated as she gets older? Did you know, and this still bothers me, that we had to hire a lawyer and pay her $2,500 just so we could keep Brooke? I'm serious. It's law...when a handicapped person turns 18, they must have legal guardianship in place or else they become wards of the state. Go figure.

If you really want a glimpse into the inner workings of raising a special needs person...check out the paperwork and the processes involved. These are enough to drive a person mad. And respite. Ever hear of respite? It sounds better than babysitter, especially when talking about a 19 year old girl. Most parents play the childcare game for 6-10 years and then it's over. Finding, interviewing, trusting, scheduling and tracking care givers for Brooke is a full time job itself. This has been a constant in our world for over 16 years. Right now we have 6 people (including Mike and I) who can care for her which is the most we've ever had. It takes a team of people (very special people) to care for Brooke and not just anyone is comfortable dealing with a medically fragile person. We are blessed to have a great support system, but it can be exhausting managing it.

Record-keeping. I am the record keepingest person that ever lived. If I could name a degree after myself it would be something pertaining to record-keeping. This has been a skill of mine that has been put to use time and time again and something that I feel is crucial at times. I kept a seizure journal to see if I could find a pattern to her seizures (didn't happen), a treatment log for 7 years so we could find a pattern for what worked and what didn't (found it and fixed it), and most recently - a blood clot medication chart that helps me keep track of her meds, side effects, and INR results. I can't remember all of this stuff, so I put it in charts, journals, tables, etc. All of these things are a part of our life that sit quietly in the background and go unnoticed by most. I have always said..."It's not Brooke that's hard, it's the paperwork and processes that go along with her."

As hard as it is, and as tiring as it's become...I wouldn't trade a second of any of it. "Thank you God for giving me the skills needed to care for this child. Thank you for giving me common sense. Thank you for giving me the ability to research when I don't have an answer, and the ability to ask questions when I'm unsure. Thank you for my perserverance and determination, even though it intimidates some people. Thank you for Brooke and everything she has taught us." ----AMEN

Peach of a Week - Mind Readers

Brooke had a good week - FINALLY. She went back to school, had fun, and got to play with her new tube of bubbles yesterday. Life is good. Today she acts like she feels halfway decent. YAY! She's still a little congested, but maybe she's on the mend. She'll stay with ma and papa tomorrow, have another INR done, and hopefully get in some much needed rest. The INR was 1.9 on Monday and the CBC showed that she is a little anemic. Didn't I say that? My Jr. MD degree is really starting to pay off. Ha. I had already guessed she was anemic and started her back on SlowFE. Today, knock on wood, the much dreaded 5 Mg of Coumadin (the big, bad dose that we all dread) didn't tear her stomach up. Thank you God!!

Mothers learn to read the minds of their babies out of necessity but as the babies grow into toddlers and start to communicate, the need eventually goes away. Mike and I have been reading Brooke's mind for almost 20 years now. It's a gift but can be a little freaky at times. I literally know what she's thinking at times just by the look in her eyes. How weird is that? She communicates very eloquently once you've been around her enough to learn her signs, her gestures, her verbalizations, and her mannerisms. But there are instances where we remain clueless to what her needs/wants are. Please forgive us Brookie for those instances where mommy and daddy don't have a clue!! Thank you for not giving up on us!! We try...we really try very hard!!

HUH-HO!

One thing that we've learned lately that really bothers Brooke are her toes hanging out of her support stockings. Her baby toe peeked out earlier tonight and she said "HUH-HO." She wasn't about to do anything else until Mama or Yaddy stuck her toe back in. She's quirky ...there's a set place and time for things in her world and if any of it is done out of sequence, it really upsets her balance. "Her karma is thrown off." Ha. She also has a very keen sense of time and direction. She knows when it's time for us to get home and she starts worrying if we're late. And she can tell you how to get just about anywhere she's ever been. She's always had incredible senses!!

I probably shouldn't admit this because I certainly don't want anyone thinking I'm a crazy mom or anything, but there's just times that her constant "mama, mama, mama," and "the clinginess" get to me. So I do what I believe any other mom would do and I turn all of the lights on in the house. This drives her nuts! She usually likes things dark, so it keeps her occupied for a while. Recently, she's done a 360 and now all lights have to be on, so I guess the new game will be to turn them off? Hmmmm...

A real pet peeve of Brooke's are for socks to be hanging out of the drawers, chords tucked in a drawer, my curling irons not plugged in by a certain time each morning, the blinds not opened each morning, the lamp not turned on at night, etc. etc. She's very routine. As a little girl, routine used to mean everything to her, but she's learned to be more understanding and accepting of change as she's gotten older. Thank goodness. No longer does a simple rearrage of the living room furniture throw her into a tailspin like it used to.

She does help keep us in line with her constant checking of the lights, reminding us when we leave something plugged in, reminding yaddy to put on his wedding ring and watch, telling mamma not to forget her purse, unplugging our phones for us or especially when we forget to put on our seat belts. She's a regular little safety cop! What would we do without her?

Blood Too Thin - Special Friends - Family Death

Forgive me for not blogging sooner...it's been a crazy week! Brooke stayed home from school all week last week and continued to have issues until Friday. Her INR on Thursday was 3.7...that explains some of her issues! From 1.8 on Monday to 3.7 just 3 days later...that's some fast thinning of the blood. It's too thin now, so the doctor is working to bring it down and level it off. We figured out what some of the problem was...any time she takes a 5 Mg dose of Coumadin, she doesn't feel well, has little energy and her bowels get loose. 3.75 Mg or lower doesn't do that to her. So the doctor pulled her off of everything Thursday night and she started back on 5 Friday, 3.75 Saturday and will do 5 again tonight. Ugh!! I hate that dose and plan on making sure the nurse explains what it is doing to her when she calls him with INR results tomorrow. I'm fairly certain she's anemic, so I started her back on her SlowFE pills. She still has her head congestion, runny nose and nasty cough as well. She's really had a rough week! The good news is...no more Lovenox shots. YAY!!!

We took Brooke to eat lunch with the Special Olympic atheletes on Friday and then to opening ceremonies for the state equestian games that night. She had a blast. The plan was to take her to the dance Saturday night, but since it followed a 5 Mg dose of Coumadin the night before...she didn't feel up to it. Today is back to a good day since she took 3.75 last night. I hope our lives don't have to revolve around Brooke's bowel habits forever! Ha.

We lost another member of my family this week. My 2nd cousin, Charles Widner passed away Friday. It seems like we've lost so many kin in the past 10 years. My mom's side of the family is big and they're a very close family. I love being around them! They're loud, funny, personable, and very much into showing affection. My dad's side is the exact opposite.There are very few people left, we never see each other, and they sure aren't comfortable hugging or kissing you. The Barker's are down to one original sibling...my Aunt Bob. (She is my granddad's sister.) Yes, I have an Aunt Bob and Uncle Robert. :) There are no two nicer, Christian people than Robert and Bobbie Jean Widner. They are both very kind, caring, humble people. Beautiful inside and out! My thoughts and prayers go out to them right now as they mourn the passing of their son Charles a.k.a. "Hooligan." Always, always, always MAKE TIME FOR YOUR FAMILY! There is nothing more valuable.

Please continue to pray for Brooke as she tries to fight all of her health battles. For the ability to ward off her sinus/allergy issues. Ask that the new spots on her legs leave as quickly as they came and pray for her cough to go away, for her to find the stength and energy levels she needs and that the INR will level out so that the Coumadin dose can be reduced. Thank you for your continued love and support and well wishes. Mike and I couldn't do it without the love and support of our friends and family.

Home Again with Miss Brooke

Miss Brooke still isn't feeling well so I stayed home again with her today. My poor baby girl!! Mike is keeping her tomorrow, respite on Thursday and Nanny on Friday. With severe neutropenia it's twice as hard to fight off things but as of right now, she is somewhat perkier than she's been the past 3 days. Her nose is still running, she's complaining of her stomach hurting, she says she has reflux and still has loose bowels so we're far from well, but hopefully on the way to weller. It's pretty miserable stuff whatever it is! My goal today was to keep her hydrated and to get some food in her. Accomplished. (I think?) I got her to eat at lunch, she ate a snack she wanted and just ate some chicken and rice. I even have her drinking a little bit of gatorade, which is a big feat itself! Brooke is the root beer kid. Queen Root Beer! She loves the stuff, and I don't mind her drinking it because she needs to drink something, but I am trying to get her to alternate root beer with "at least" half a cup of gatorade every now and then. We'll see how that goes.

Mike just gave Brooke her nightly shots of Lovenox, and she cried big crocodile tears like she usually does. But tonight, she just happened to have her doctors kit on the couch beside her so we had her give US shots in our bellies. She thought that was pretty neat. And yes, she laughed. What a good sport! So forgiving. This is another one of those "life lessons" I talk about her teaching us!

Please continue to pray for Brooke and for added ability to fight this stuff and a quick return to good health. Pray for Mike and I; for strength in caring for her. It's tiring. Thank you all for the friendship!

Crabby Monday Reunion

Well...after figuring out it had been 5 years since our last outing together...I arranged it and made it happen. No more excuses. No more "we need to do that again." 4 friends and I work met at Red Lobster tonight for an old tradition we fondly used to call "Crabby Monday." Not sure where the time has gone since our last supper outing, but we managed to catch up on old times tonight and have a few laughs. Gone are the buckets of crab legs and the prices from 5 years ago, but 3 of us did have 1/2 pound of crab legs (each) which were heavenly. It's a tedious and messy job, but one we were proud to tackle. Thank goodness for close friends and fun times. It's nice to get together outside of the craziness of work. Hopefully it won't take us another 5 years to make it happen again!

To those who couldn't make it...we hope to see you next time!

Home Sick - Missing my Dad - Birthday Party

Brooke is home sick today. Her allergies really bothered her over the weekend and she pretty much feels miserable. Runny nose, congested head...just ickey feeling. Early this morning she woke up with loose bowels. It could be a side effect of the Coumadin or possibly a stomach bug of some kind. Not sure. I'm home with her so I can keep a close eye on her. No fever, and I pray that stays the case! The nurse just left and Brooke's INR is 1.8. YAY. It went from 1.4 on Tuesday to 1.2 on Friday, which was frustrating. She's on 5 of Coumadin now, which is a big dose plus the Lovenox shots. Coumadin is a beast! I had to google cold medications to see which ones were safe to use with Coumadin, and at lunch I made spaghetti and worried whether or not I could put tomatoes in the sauce. Coumadin is very unforgiving, so you have to be super diligent in the research of meds, foods, side effects, etc. This has been a true learning experience for me.

Today marks 3 years since I lost my dad to cancer. Being at home today has made it harder to cope. Being at work and staying busy have helped me deal with this day the past several years, but here I sit in my PJ's at almost 2:00 in the afternoon. I miss my dad so much, but I am thankful he no longer has to live with the pain. And I know the journey with Brooke over the past 3 years would've broke his heart. He hated to see her go through the things she did, and it's been so unrelentless the past year and a half. My dad didn't live to know she had a blood clot two years ago and another right now, or salmonella, or anemia, or pseudomonas, or neutropenia. He didn't live to see her through her gallbladder surgery or the most recent 6-hour dental surgery. But when he was alive...HE LIVED. And he lives on through her. He was Brooke's best friend and I know she misses him dearly. I LOVE YOU DAD!!!

Mike brought home a birthday cake from Albq. Saturday night and we had another birthday party! Brooke and I went to Dollar Tree and spent a bit of money on birthday plates, cups, napkins, decorations, etc. We had the real deal this time! Ma and papa came and even brought Brooke gifts. How funny is that? She loved it. Life is short----it's up to us to make it sweet.

Please pray for healing for Brooke. That she feel better soon and without any more side effects from the Coumadin. Pray for her safety...bruises and bumps can be dangerous. Ask that God continue to guide Mike and I as we care for her.

Love you all!

Two Prayers Answered - Aunt Vera

Today was a good day. We had two prayers answered. The first was that the internal medicine doctor I want to get Brooke in to see in Clovis accepted her as a patient (even after me telling his nurse some of her more challenging issues). It's comforting to know that not everyone is intimidated by Brooke's medical needs. We see him in 3 weeks for a physical. Thank you God! I pray he is exactly what Brooke needs.

The second prayer answered came by way of me finally getting a bag of green chilies! It was the last bag that S & S had in stock. I've tried for 3 weeks to get some bought and all I can say is...WE LIVE IN NEW MEXICO AND EVERYONE HAS THE SAME NEED! My husband is very happy! He's a green chile addict. Green chilies just make everything taste better!

Aunt Vera is in town for the week and we took her out to supper tonight. We treasure time with Vera and really miss her not living in Clovis (even though we appreciate the free B&B that we call the "Hankins Hotel" in Edgewood). She and Rick have saved us a lot of money over the past 11 years by not having to pay for motels when we are in Albq! Vera is all too familiar with the fraility of life and is a true fighter in every sense of the word. We thank God for Vera. Blood clots and Coumadin is something she too has to deal with. I told our waitress at Juanitos not to mention the "G" word because we had two blood clot gals at the table. Ha. No more guacamole for a while. Queso is ok though. :) Tomorrow Brooke gets to spend the day with Aunt Vera at Ma's house and they are planning on baking cookies. Every child needs an Aunt Vera in their lives!!! Brooke is blessed!

Coumadin - New Doctor Possibilities - Ranch & The Food Book

Brooke is doing great and seems to be enjoying being back at school this week. As of Tuesday, her blood level sits at 1.4, so the Coumadin and Lovenox are slowly doing their job at "thinning" the blood.(Need to hit 2.) The bruises are very slow to heal since people with Neutropenia have a difficult time healing in the first place. "If it ain't one thing - it's another!" The right ankle and calf look really good, the knee looks better and the thigh still has a ways to go. The right leg has remained bigger than the left ever since the last blood clot, which I've been told is normal. A big thank you to my brother Kirk for "hooking us" up with 4 more pair of support stockings. Have you ever priced these? WHOLEY GUACAMOLE!! Thanks to him...we're good to go for a while.

As of two weeks ago, Clovis has a Hematologist, so we're going to give him a try. It would be so much easier to be able to deal with the blood clot and Neutropenia here instead of having to drive 4 hours for everything, especially since both appear to be long-term care. I'm waiting for Dr. Libby in Albq. to send his notes and a referral for Brooke so we can get the appointment in Clovis set up. Please pray this is a positive step and that this new doctor is patient, knowledgeable and compassionate. The underlying beauty here is if this doctor will handle the clot and Neutropenia, it makes finding a new primary care doctor a LOT easier because you take some of the elements of fear out of the equation. I've got a call in to a local Internal Medicine doctor who comes highly recommended by several of my nurse friends. I want to talk to him about Brooke and see if he would be willing to take her as a patient. I also ask for prayers in this area. I have a sense of peace lately that I haven't had in a long time, so I feel God is at work for me. I truly feel I am heading down the right path.

On a lighter and funny note...I posted a while back about Brooke being a professional cheese dissector. She is also a connoisseur of ranch dressing. She drinks it. I used to get on to her, but now I figure "Why not? What does it hurt?" What can I say...the child likes ranch! She's standing beside me in the computer room pointing to where she wants to eat tonight. She has a homemade food book that has pictures of meats, veges, fruits, salads, etc. I made it so she could help plan meals. The problem is that I put a section in the back of the book that shows restaurants. All she uses the book for is to tell us where we're taking her to eat out every night. It's been a real diet killer for us!

My Rock - CND - Brooke - The House

Have I mentioned lately how much I love my husband? Well...I do. He's truly the best husband and dad!! He is my rock. I had to call him during the football game last night to see how to stop Brooke's bloody nose. (He films, so it was ok to call him. Ha.) It donned on me how much I rely on him. Not only for my moral support and comfort but for his expertise and guidance in areas I lack. As a coach, he's seen lots of different kinds of injuries and I couldn't think of anyone better to ask for advice with this scenario than him. Of course, Brooke didn't take too kindly to me stuffing cotton up her nostil, but it did stop the bleeding after about 30 minutes. That was scary and unfortunately is a side effect of Coumadin.

Not sure what's gotten into me but I'm actually cooking today. Homemade chicken and dumplins, which I love. No one makes them as good as my great-grandmother, Granny Opal. I used to spent every Sunday at her house eating with her and Papa Giles. Those are great memories that I will always cherish. Not many kids get to grow up with two grandmothers, one grandfather, and a set of great-grandparents all within walking distance. I was blessed. In fact, when Brooke was born, she had 7 living grandmothers. She was a 5th generation which is priceless. Got the picture and everything!

Brooke didn't have a blood test done yesterday...the nurse will come Tuesday and Thursday of next week. Unfortunately, another several days of Lovenox shots. Ick. I was praying we would be done with those after yesterday. I gave her a bath this morning and washed her hair. The poor child has Mike's oily hair and my dry skin...what a combination! She's sitting in the living room right now watching the Hallmark channel and playing with some toys. I'm not sure what got into Mike last Wednesday when he stayed home with her, but he put new batteries in Brooke's saxophone. There are no words to the annoyance of this toy. But Brooke LOVES the silly thing. A big thank you to Brooke's friend Justin Frazier who brought her a hat and magic wand from the circus! Brooke loves them. We hope he enjoys his Mickey Mouse shirt from WDW! I finally uploaded my pictures this morning, so hopefully I can add some of those to the blog. Not sure why I've been so lazy lately about not doing it??

I'm so thankful for my mom who kept Brooke yesterday and helped me get some decorating done last night. I now have something hanging on the walls in my living room. It's a little bare still, but at least it's a start. These things take time! Mom is so meticulate with her placement of everything. She wears me out. Ha. I admire people who move, and have their homes looking showroom ready immediately. I'm not one of those people. It takes me 3-5 years to get it where I want it. I have to think about things and once I get an idea in my head...I have to find it. If you want to come visit...please do. Just be sure to do it before the flu season hits!!

Blood - Needles - Support Stockings

Sorry it's been so long since my last post...time sort of got away from me. Brooke is doing well. She's had blood tests done at home by home health nurses Monday and today (and will again on Friday). The problem has been actually hitting a vein. Brooke has little tiny rolley veins which is not good. It took 3 nurses, 2 visits and 6 sticks to get it drawn on Monday with blood results of 1.08. Today entailed 2 sticks and a call to her doctor in Albq. to see if they could do a finger prick instead. A prayer was answered when Dr. Libby ok'ed it. Using this method, the nurse had it done in a matter of seconds, in the machine, results given and a call in to Dr. Libby to report it. This is so much easier on Brooke than the traditional method! Her blood levels are slowly coming up. She's at 1.2 now and she needs to be between 2-3. All of you Coumadin experts out there please forgive me if I give mis-information. This is new to me so I'm learning it as we go. Give me a break...I was working on my PhD in Neutropenia research when this hit. Ha.

Brooke is bruising some now...her belly looks awful. There are so many blood spots and I feel like I'm running out of places to stick her. I'm ready for these Lovenox shots to be over with! We have two more days left and Dr. Libby will determine if we can stop them or if we have to go another 7 days. He's increasing the Coumadin dose starting tonight so maybe his plan is to stop the Lovenox tomorrow night? Hope so! Brooke has had 24 needle sticks since Friday. Only 8 of the 24 were not in her belly, so you can imagine how tender and sore it must be! It hurts me to give her shots each night. I'd gladly take it all from her if I could!!! We see Dr. Libby a week from Friday in Albq. to follow-up on the treatment plan, etc. Thank goodness Brooke was already established as his patient! He has made this process treatable in Clovis. It's so nice not to have to drive to Albq. for EVERY single thing...we are there enough as it is.

Brooke continues to wear her white stockings for protection and I haven't noticed her legs falling asleep in a few days so maybe her circulation is improving some? The swelling is still in her thigh, but does look better. I think things are improving. She still feels great, and is super happy today because dad stayed home with her and put new batteries in her saxophone. UGH!!! It is by far the most annoying musical toy ever created, but remains her all-time favorite. She's pretty excited because I'm taking her to school tomorrow for a visit. She misses her friends!! Hopefully she'll be back at school next week. Pray for less-clotting in her blood.

Family

There is nothing more meaningful to Brooke than spending time with her family, so today was a huge dose of happiness for her. Last night, we got to eat supper with Uncle Rick and Aunt Vera. Today, we had lunch with them again, plus Aunt Carol, Ma and Papa. Yay. This afternoon, Briana, Uncle Kirk, Aunt Leslie, Caitlin and Nanny came over. We went out and ate supper and had a belated birthday party for Briana complete with candles and singing. Brooke kept telling everyone it was HER birthday. Silly girl! Once again...no white cake's at Wal-Mart. What's up with that? We had to buy cupcakes instead. It was a fun, family-filled day!

Brooke was more tired today than she has been the past several days and had a restless night. She kicked her legs several times throughout the night which makes me wonder if they hurt some? Aunt Vera said her legs went to sleep a lot after her blood clot hit. I have noticed that with Brooke. Maybe that's it? I researched the Coumadin diet so I will know what Brooke CAN eat. Not much. Everything healthy that she eats is pretty much off limits now. This is going to be challenging. Brooke is already bruised from the shots. I can only imagine how horrific she will look a week from now after 16 sticks. Poor thing!

Thank you for the love and support.

She's Home!!

Brooke got out of the hospital tonight. YAY! Everything seemed to fall into place today. I never doubted that it would...I'm just not as patient as maybe I should be (especially when it comes to my baby). We came home with Lovenox shots and Coumadin pills. Brooke's blood levels are still too high, so we will continue doing both the Lovenox and Coumadin for at least a week. I have orders for tonight through Sunday. She will have lab work done Monday that will determine the next round of treatment, and so on and so forth for labs done again on Wednesday and Friday. Home health is going to come to the house and handle the labs for us. Praise God! The right leg looks amazingly better! The thigh is still 22" but the calf and ankle are much better.

After several discussions tonight...Dr. Luu agreed to continue providing Brooke's care. Thank Goodness! Honestly...I've been very worried about this. He was there the night Brooke came into the world and has been an intrigal part of our lives ever since. He knows Brooke better than anyone. The thought of having to start over with a new doctor made me sick. And who? Where? Brooke isn't the typical 19-year old patient! She's an adult, year-wise, but that's it. I thank God that he agreed to keep her. This was the answer to my prayers. Thanks to all of you who helped me in praying for guidance with this. What an awesome God we serve! Dr. Luu and I actually compromised...we have to take the BIG THINGS to Albuquerque and he will handle the SMALL ONES here. Deal. Brooke is a very challenging patient! Not only does she have several ailments that most doctors never see in their careers, she has 3-4 really big ones happening all at the same time! We can't finish treating one before something new pops up. It can be a bit hard to grasp at times and she can be very intimidating to doctors, whether they admit it or not. And understandably so. I told Dr. Luu that we don't expect him to have all of the answers. This is Brooke! We treat what comes up and pray a lot.

Please continue to pray for Brooke as she fights to rid her body of the blood clot. Pray for her blood levels to go down so the clotting factor is lessened. Pray that the Coumadin levels can be stabilized and easily maintained. Pray that we can get her off the Lovenox as quickly as possible. Let me put this into perspective: Her weekly SUBQ infusions + 7 days of 2 Lovenox shots (per day) equals me having to put 16 needles in my baby's belly in a one-week time frame. I wouldn't want 1 needle put in my belly, much less 16. This child has gone through more than most of us can even imagine. And yet she continues to smile and touch the lives of most people she comes in contact with. Brooke is without doubt the toughest human alive! And never questions why. Doesn't know what pity is. Rarely complains. Is always happy. And is simply the most amazing person I will ever know. She was put on this earth to teach us and what incredible things have we learned from her!

Thank you God for giving me this child! What a gift!!

Brooke Update

Brooke had a good night last night and a good day today. YAY. She has not once complained of any pain; what a blessing that is! She took a Lovenox shot last night. Lovenox is what she was on for the first clot (for 7 months). Talk about an insurance NIGHTMARE!! I've been told it's a lot easier to get it for an adult (hope so!). At 9:00 tonight, she will receive another Lovenox shot plus Coumadin. Dr. Libby (through Dr. Luu) is going to use both drugs for a few days until her blood levels get where they need to be and at that point, only the Coumadin will be used. It's going to take a week or so to figure out the dosage and acceptable blood levels. Our good friend Melba, a.k.a. "nurse crazy" (according to Brooke) was in the room when Dr. Luu came in and she said home healthcare can handle the medicine and blood testing in our home for us. PRAISE GOD! Isn't it funny how you sometimes run into services that will benefit you completely by accident? I would've never thought of them. I hope it works out to where we can use them. The less trips to the hospital/lab...the safer Brooke will be. It looks like we're on the right track now and Dr. Libby is in the driver seat. Maybe we'll be home tomorrow...but it's all dependant on the blood test results tomorrow morning.

Thank you all for the calls, the emails, the texts, the facebook messages, etc. I felt your prayers today and feel like my anxiety level is better. Keep the prayers coming our way! Pray for a peaceful night with Nanny...Brooke was a little panicked when momma left while ago.(THANK GOODNESS FOR NANNY!). Pray for no side effects with the Coumadin and for good test results tomorrow morning. Pray for the simplest course of treatment for Brooke. And especially...just pray for God to continue to watch over her, protect her, and let her know she's always safe in His loving arms.

God Bless you all!

Blood Clot

Prayers needed please!!! This is NOT how I planned on spending my Wednesday evening! Brooke has been admitted to the hospital (in Clovis) with a blood clot in her right thigh. Same spot as the last one and just as big. We noticed extreme swelling in her feet last night which alarmed us. This morning, both were still swollen and the right foot and ankle were a lot worse than the left. I put her stockings on and sent her to school. I went to school and checked on her at 11:00 and the swelling looked the same. There wasn't any tightness of the leg nor was it hot, which are both signs of a blood clot. So I called Dr. Luu's office and got an appointment for 4:00. Fast forward 3 hours...my mother always said not to say something if it wasn't nice, so I'm not going to rehash any of my frustration or anger. Nuff said! There's not enough lines on this blog for that!!! To shorten the story...Dr. Luu is going to give Brooke Lovenox tonight, which is what we took last time she had a clot, and start her on Coumadin tomorrow. He will most likely keep her in the hospital until Monday so her blood levels can be monitored.(This is normal for Coumadin.)

I'm at a loss here. There are no words to describe how Mike and I feel right now. Tears help some, but not enough. Brooke, on the other hand, is as happy as she can be. There is no pain, but also no understanding of why she's back in the hospital. Please pray for healing for Brooke and for comfort. Pray for knowledge for those who treat her (pray really hard on this one). Pray for good communication between our doctor in Albq. and Dr. Luu. Pray for patience for me because I'm fresh out for dealing with people/things outside of my control. Pray for a good nights rest for Brooke and I. And for protection from other "hospital germs" that could harm her. Ask God to wrap his arms around Brooke and protect this sweet, kind, loving, strong, determined, tough little girl.

Thank you my dear friends! Thank you for being there for us.

Laughter

Brooke has a new laugh. Several, to be honest with you. One of her new laughs is a deeper giggle and it makes Mike and I laugh just to hear it. Her other new laugh is a bit of a genetic trait she inherited from me, her Nanny, her Uncle Kirk and Briana. It's where she gets so tickled that she starts crying. Yep, the secret is out. We're a bunch of silly cry-babies. Ha. Laughter is such good therapy and it seems to make even the worst of days - better. I'm so thankful I have a happy child...what a blessing she is!

Birthday Cake

Brooke has been wanting a birthday cake really bad. She loves birthday parties and has been on a birthday cake buying kick lately! It's an expensive habit! So we're at Wal-Mart Thursday night and she insists we buy a cake. We looked and looked and looked for a white cake. (Brooke doesn't like chocolate.) After 15 minutes of standing in front of the bakery section, and a worker's trip to the back to hunt for a white cake, we spot a little white and blue cake that says "white with strawberry filling." That will do! We bought it, brought it home and proceded to have a birthday party with the three of us. I didn't have any candles so I lit the lighter and let Brooke blow it out. It was a real "spur of the minute thing." Ha. Mike cut into the cake and tragedy hit... it was chocolate. What a disappointment for my baby...she was crushed. The cake was mislabeled...darn Wal-Mart! Mike says when he gets finished eating it he might complain. Ha! Maybe our next fake birthday party Brookie will actually get to enjoy her cake. Hope so!!

Life is short...make it fun!

Brookie is so happy!

My baby loves school. She loves being around her friends. Loves riding Bus 81 with Tracy and Diane. Loves working in the office and delivering the newspapers in her purple Wildcat wagon. She is happy to be out of the house. Praise God! While we know this may all be temporary, depending on her health and the upcoming flu season, at least she is there now getting to be her happy, sociable self. "Butterflies aren't meant to be caged." Fly while you can Brooke! And to the people who whine and complain about having to do this and that, remember this: "At least you can." We all need to remember that there is always someone somewhere who would gladly trade shoes with us. Be thankful for what you have, be truthful to the people you love and most importantly - be a diligent servant to the Lord.

Road trip - School tomorrow

We made it home from Albuquerque safe and sound after a long, 16-hour day. We were exhausted!! We saw Dr. Libby and his initial reaction was to give Brooke another shot of GCSF. The $3,000 shot that makes Brooke's bones hurt and has positive effects of only 10 days. Ugh. He left the room to go call an Infectious Disease doctor for a consult and came back a few minutes later, re-examined the spots and decided since she is healing on her own that he wouldn't do anything. He said the course of action we are taking isn't the usual course for this type of infection, but that since what we're doing seems to be working - to keep on doing it. The spots on the right leg look TONS better but she has two new spots on the left leg that are getting a little angry looking. I'll keep doing our thing and see what happens. Brooke also had bloodwork done and the level is still at 100. Pray that her neutrophil levels rise! She is at such high risk being immune deficient AND severely neutropenic! It's frightening.

Brooke is excited about going to school tommorow. She hasn't been since week 2 of January. Dr. Libby said to wash our hands all the time just to be safe. Will advise the teachers at school to do the same. We'll see how Brooke handles school. This will be the ultimate test. Everyone knows that this is a "wait and see" time...and it may or may not work? Once flu season hits, she'll most likely be back at home quarantined again. We have to protect her in every way possible from germs.

Thank you all for the prayers and words of support. Please keep them coming. Pray for Brooke's safety as she enters back into the school population. Pray that the people dealing with her use common sense and every precaution necessary to keep her healthy. Pray for the neutrophil levels to return to normal. This would greatly provide a layer of protection that Brooke desperatly needs. Pray for Mike and I as we continue to care for the skin infection and all of her other medical needs. Summer was easy...fall and winter are the challenges.

God is the ultimate healer!!

Mystery Spots Diagnosed

Well...this is a new one for us. Pseudomonas Aeruginosa. Infection of the skin. Dr. Luu suggested an Infectious Disease doctor or Dr. Libby, our Hematologist. I called Dr. Libby and we're going in to see him tomorrow at 11:00 (blood work at 10:00). He hopes to call in an Infectious Disease doctor to evaluate her while we're at UNM. The place actually looks a LOT better today than it has so something we're doing is helping. Mike told Brooke she wasn't going to school tomorrow...I'm thankful he did it because I couldn't find the right words. It breaks my heart to have to keep taking this child back for more and more and more. Especially on a day she was looking forward to. She has been so excited about finally getting to go back to school to see her friends! Hopefully this junk won't "put her back in the bubble!" My mom is coming tonight to spend the night with us and we'll leave around 5:30 in the morning. Going to be a long day!! We're picking up Aunt Vera in Edgewood so she can have some "girl time" with us. Always nice to spend time with her!

The good news is...NO MRSA! I hope and pray that this stuff is easy to get rid of and easy to keep gone! My poor baby. Yes, I've had my moments today. I've been mad. I've cried. But then I realized that it's out of my control. No need to worry about it...there's nothing I can do except turn it over to God, which is what I am supposed to be doing anyway. Not sure why that is always so difficult to grasp? Reasoning eventually sets in my thick skull and I manage to "turn it around." It's all in God's hands.

Please pray for a safe trip there and back and for good results at UNM.

Thank You Eunice Kennedy Shriver

Anybody who knows me well knows that I have a fascination for the Kennedy's. I love to read about them, write about them and talk about them. Writing about Eunice Kennedy Shriver is a first for me, but is something I can do. She was an incredible woman who first encouraged her father Joe to "come out" with the story of her beloved sister Rosemary, who was disabled. Then in the 1950's, she held the first ever "handicapped games" in her backyard for a few local individuals. In the 1960's, these games became the organization known today as Special Olympics. Some 40 years later, the organization has grown into something too magical and awesome to put into words. I encourage everyone to attend a Special Olympic event of any kind in order to experience first hand the magic that it brings. The legacy of Eunice Kennedy Shriver will live on for years to come through the faces and smiles of thousands of Special Olympians all over the world. Thanks to her courage and vision, she created an event that has changed the lives of thousands of people. Not just the athletes, but the spectators as well.

Thank you Eunice Kennedy Shriver. Thank you for making a difference in Brooke's life and in ours. And thank you for standing up for those sweet souls whose voice previously wasn't heard!

Professional Cheese Dissector - Birthday's

Brooke has become an artist of sorts; she can dissect cheese from the crust on cheese sticks like nothing you've ever seen. Not sure why she wants the cheese and not the crust? She doesn't get near as excited when I buy her plain ol string cheese. She'll eat the crust eventually if we sit at the table long enough and her cheese dissection techniques are both intriguing and masterful. Last night, we ate at Applebee's where she has become an addict to their combination sampler appetizer. She loves spinach/artichoke dip and it seems to be the "thing" with her right now. She seemed more on a mission though last night to extract every last bit of cheese from the 4 cheesesticks that came with the appetizer. Let me say, it was the stringiest cheese we have ever seen! I was sitting by her and she kept flinging pieces on me and her elbow kept hitting me in her mad efforts to extract the cheese. Odd. And funny to watch. She handles her cheese dissection skills with the precise of a master diamond cutter. What a funny girl!

Yesterday Briana turned 20 (where has time gone??)so we called her on the speakerphone so Brooke could sing Happy Birthday to her. Birthday's have become a really big deal with Brooke lately. She's always liked them, but she keeps wanting to buy birthday cakes and have parties for people who aren't having a birthday. She loves the whole celebration thing. It's cute. Back in July, when we were in Albuquerque for two days of doctor's appointments, Brooke insisted we buy a princess birthday cake (with cupcakes) for Uncle Rick. So we did, and we sang to him, and had a party. His birthday is in October! What can you say...here's a child who enjoys the fun things in life and wants nothing more than to spend time with family and friends.

Have a nice day friends!

Doctor - Rain - Fly's

I took Brooke to the doctor yesterday, and it's just as I expected...the mystery spots are still a mystery. SHOCKER! Dr. Luu took did a culture and I took it to the lab to check for MRSA. (This was a 2.5 hour process.) Please pray it isn't MRSA!!! He didn't really think it was, but since so many children have it now days - he wanted to be safe. He feels it is more like emphatigo (spelling??). We'll have the results in 3 days.This is the same steps we went through in August with the first mystery spots. He put her on Doxycyclene (she is taking pills...and doing a fine job of swallowing them)just as a precaution. I am also continuing to drench the spots with Bacroban morning and night. They look better...just not gone yet.

Thank you God for the wonderful rain! I almost escaped having to be pounded by the hail in my car, but was about 5 blocks short. I only encountered pea-size, but I hear the other side of town got bigger hail and more of it. I don't think it was enough to hurt White Lightening (my car). Yay. Since the storm came from the North...my landscaping is ok. Whew. I just knew my new hot pink tree would get pounded, and I would be forced to cry like a baby but the house shielded it. Always glad for the rain, just wish the wind and hail would stay away! What can we expect??? It's fair week...we all know it rains during fair week.

The fly story. This one's too funny to pass up! My husband went postal on the household nuisance's last night. I guess he finally broke - poor guy. He got a crazed look on his face, mumbled some incoherant words and started slapping around the kitchen with the fly swatter. I walked over to evaluate the "situation" and nicely pointed out a fly on the back of the bar chair. He hit it, and it managed to fly down the front of my shirt. Serious! It was disgusting!! I started screaming and jumping up and down and trying to find it. I was totally grossed out!! The fly fell to the floor and I immediatly changed clothes. Flys are disgusting creatures. Question #2 when I get to heaven pertains to flys.Ick. Brooke laughed so hard I thought she'd never catch her breath. She is such a crack-up! No telling what she must think of her mom? Ha.

Have a nice day everyone and please pray for negatiave MRSA test results! We don't need that stuff!!!!!!

Spots - Haircut - School - Landscaping

What are Brooke's mystery spots? She's got two new ones today in other places. These are angry looking, super big, red, sore to the touch spots. The big clump on the back of her leg looks somewhat better but still very nasty. I am bumfuzzled. Guess we'll be making a trip to see Dr. Luu tomorrow!

Brooke feels much better today. She's not real happy with me since I just cut her hair and made her take a bath. Neither are her favorite things to do. She loves baths, just when they don't involve washing her hair!

I've been busy trying to get everything ready for school Friday. What a chore!! Super-clean freak mom is sending bleach wipes, Lysol spray, lots of boxes of kleenex, and hand sanitizer for both the bus and the classroom. Need to be clean and germ free!! Mike starts back tomorrow and Brooke on Friday. It's depressing!! Whose brilliant idea was it to send the kids to school on a Friday? What kind of sense does that make??

Mike is doing some landscaping at the front of the house. Looks nice. Of course, it will look better in 2-3 years when it's all grown in! We've worked really hard to get the "curb appeal" factor on the new house. It's getting there...we love the house! We now have a beautiful hot-pink crepe myrtle and 7 yellow (for Brooke) day lillies(and some other things I can't remember the name of). We're lucky to have a good friend who is a genius when it comes to plants. I'm not going to mention his name because he would kill me. He stays so busy as it is, and landscaping is just his side hobby! Thanks "C" for the awesome suggestions!!!

I pray that everyone has a wonderful week and if you're a CMS teacher...my sympathies on you having to start back tomorrow. Believe me...I am depressed right along with you. My job as a mom gets a lot harder during the school year! Mike is the best stay-at-home husband/dad that God ever created. I am blessed.

A melt-down sort of day

Poor Brookie had a rough day today. She's been struggling with her allergies the past several days and just didn't feel up to par today. She was extra-clingy and just wanted to lay around. She had a headache most of the day and even felt a little warm so I gave her tylenol. She developed more of her "mystery bumps" two days ago and there are a clump of about 8-9 on the back of her leg. She's had these off and on since the salmonella, so I think they are infection coming out of the body. But that's just a guess. They are sore to the touch, which is unlink the ones she's had in the past. We're keeping Bactroban cream on them, but it doesn't seem to be doing much. If they're not better by Monday...she's going to the doctor. And as if this weren't enough...she got something in her eye earlier. We have no idea what she did but it took over an hour for her to be able to open the eye. We're wondering if she got hand sanitizer in it. And since she doesn't know not to rub it, and to open the eye so the tears can flush it...it was bad. She insisted we take her to McDonald's, so we did. Part way through her meal (one eye open, other eye covered by left hand)...she finally broke down. It's hard eating with one eye and one hand! The tears started coming and she had a total meltdown. You can always predict it's coming but there's usually nothing you can do to stop it. So she cried - right there in McDonalds. I took her to the bathroom to try and flush out the eye (for the second time) and to calm her nerves. It took me about 5 minutes of "coaching her" before we could return to the table to eat. It was tragic for her. Her nerves were raw today. So now she's sitting in the living room with dad and Brandi wondering when mom is going to get off the computer and put her to bed.

My baby needs some TLC...night all!

What's up with these kids?

I've been meaning to share a really funny thing with you. Brooke has started raising her hand when she wants something. I guess it's a trait she learned at school. She raises her hand in Chilies the other night when the waitress walked by and pointed to her favorite dessert on the menu. Too funny. And when she wants to say something at home...she sometimes raises her hand for that too. What's up with that? What a silly girl!

The other child, our pointy-head red dog(Brandi)likes to watch TV. She enjoys shows or commercials with dogs and loves to run up to the TV to "get a better view." She's so funny. And she's started demanding a ride every night. She'll run out to the car or pickup - look at the door, back at us, and then back at the door. She's adamant about her nightly cruise. And when we get home and she's tired, she goes to bed. My bed. She's rotten! But she can give you 5 now and she minds very well. She's very smart (if only she didn't shed)! I just love Golden Retreivers!! They're so affectionate.

I bought more scrapbooking goodies today so I can get back to work on Brooke's Disney scrapbook. I found some really cute (expensive)stickers of Sully. They'll look awesome with Brooke's pictures with him. He was a really cute blue monster!! It doesn't appear that I'll get this project finished before I start back to school like I had hoped, but it's slowly getting there. It's crazy how much you can invest in something as simple as a photo album. It's those darn Disney stickers...OUCH! What great memories for Brooke though...she loves pictures!!

A surprise visit

Brooke had a surprise visitor yesterday at Ma's house; her beloved friend "OOOOOOO" (aka Randy Mascorella)from Albuquerque. She and our good friend Christine were in town talking to some local folks about Special Olympics New Mexico and we had lunch together. I was so glad Randy asked me to take her by to see Brooke. Do you know how much trouble I would've been in had she not gone by? Brooke loves Randy! Her smile was priceless. And yes, Randy did several O's with her. Randy is in a picture on this site...she's the silver haired lady with the great smile. Randy is one of those rare and beautiful people who touch the lives of just about everyone that she comes in contact with. She has an amazing gift...and Special Olympians all over the state adore her. I don't think she realizes the power she has with people. Her heart is as big as Texas and her smile is contagious. The world could use more Randy's!

The Special Olympic area equestrian games are this Saturday at the special events center at the fairgrounds in Clovis. If you want a real treat...stop by Saturday morning and watch the Clovis/Portales athlete's in action! Even though Brooke's horse riding days are over(due to the enlarged spleen)we will be there cheering for our friends.

The Road to Recovery

We knew Brooke was on the right track early Sunday morning when she woke us up singing and dancing in her fire helmet! What a welcome sight!! Mike and I didn't realize how much her smiles and laughter meant in our daily lives until she wasn't giving them. What a joy this child is. This is the "other side" of our life that I try to explain to people. The blessings in our life is greater than the hardships. The smiles and the laughter complete us. THANK YOU GOD FOR GIVING US THIS PRECIOUS CHILD.

Surgery, Shot, and Trip to the ER

SURGERY
The surgery is over!!! She was under for 6 hours with several complications. They had no luck intubating her through her nose and had issues doing it through her throat, which is common with Brooke. To make a long story short...they pulled 2 wisdom teeth, pulled 2 other teeth that had infections, fixed several, and cleaned all of them. Thanks the to Neutropenia, her gums are weak, several of her teeth are loose and because Brooke is Brooke...she has very short roots to boot. What this means is that there is no fixing what they remove. She has another wisdom tooth that they didn't mess with because it isn't causing her any problems. Recovery was the smoothest we've ever seen with Brooke - PRAISE GOD! She didn't spend much time at all in recovery, which was nice. Overall...Wednesday was a long and frightening day!!!

THE SHOT
We did blood work at 12:00 and got the shot around 2:00. For such an expensive shot, it sure was a little dose. UNM feels our insurance will pay it since it is written as a 1-time deal. YAY!!! We have to have follow-up blood work done in a week (here in Clovis) so the Neutrophil levels can be checked. The good thing about the shot is that it helps protect Brooke during her post-op recovery period. The bad thing is that it is only temporary and it comes with nasty side effects, which we started seeing today.

FEVER AND THE ER
Brooke did fairly well following the surgery and the shot until Thursday night. She waited until we got home from Albq. before having problems. Go figure! Her fever was 101 around 8:00 PM but we managed to bring it down. Then at 4:00 AM, she spiked to 103 and by 4:45 AM she was still hot so we took her to the ER. I must say, we were in and out quicker than ever before and without any of the usual hassles that we've experienced in the past. All of her blood work was fine, no infection, and her Neutrophil levels had actually already came up some. (The shot is working!) They ran a bag of saline in her and determined that she was dehydrated more than anything else. So we're really pushing anything she will drink at this point. Her eating is very hit and miss right now.

Brooke looks much better today. She's more active and the fever has been lower and easy to bring down. We pretty much keep her on a rotation of tylenol/ibuprofen around the clock to help with the pain. Swelling has been minimal. We saw some side effects of the shot kicking in today; she seems to be achey and did complain a few times of her back hurting. So I keep her on a heating pad on her back and hip and an ice bag on her cheek. She's very much pro-momma right now but I have managed to get some of the house cleaned on/off throughout the day.

Thank you for the prayers, the kind words of encouragement and for your friendship. In closing I'd like to say that even though this sweet child comes with physical imperfections, she has the most perfect spiritual foundation that I've ever seen. Isn't God great!! We are truly blessed to have Brooke in our lives.

Let's get this surgery done and over with!

Surgery is less than 48 hours away. We leave when I get off work tomorrow for Albq. but I won't know the time for the surgery until tomorrow afternoon. I hope it's in the morning; it's so hard having Brooke fast when she doesn't understand why and I hate her having to sit around a motel room worrying about what's coming. We haven't said anything to her yet and won't until we get to the hospital. She'll know soon enough and there's no need to stress her out right now.

We have an appointment for 1:00 Thursday with Dr. Libby to get the GCSF shot, but no word on whether or not insurance will cover it or not? The girl I talked to today from UNM seemed to think they would. I hope so! The shot itself comes with its own side effects so pray for Brooke to tolerate it well.

Finally...pray for a successful surgery. Pray for no problems with the meds, no problems with the teeth, and no infection. Pray for steady and skilled hands to operate on her and for a speedy recovery with limited pain. Ask that God guide us in knowing what to do to bring Brooke comfort. And especially pray for a sterile environment and for Brooke's ability to ward off any germs. As with any surgery there is risk...ask God to protect Brooke and to wrap his loving arms around her.

Thank you all for the prayers and especially for the friendship. I couldn't do it without you! Please don't forget to ask for strength for Mike and I...this is so emotionally and physically exhausting. We love you all!

Surgery is a week away!

Brooke's surgery is a little less than a week away now. Where did the time go? This has snuck up on me so fast that I'm finding myself struggling to get mentally prepared. It takes a lot of mind preperation on our part to see her through surgeries and tests, etc. It's grueling to be quite honest. Listen to me whining about us when Brooke is the one who has to physically endure all the pain. Bless her heart. I've done most of the pre-surgery prep work and I'm just waiting to hear back from Dr. Libby on whether or not insurance will pay for the GCSF shot he plans to give her the day after surgery. I emailed him to let him know we will pay for it if insurance won't...I then added that we could sell the car to cover the cost. Ha. Yep, it's a costly one! I told him it didn't matter and that we'll do whatever it takes to help protect Brooke from infection. Please pray for skilled hands to operate on her. For no complications, no additional bleeding, and most importantly for no infection. I ask God every day to continue to wrap his loving arms around Brooke and to protect her and help keep her safe. I ask that God give us the wisdom and added strength to care for her following surgery and that we find a way to make her comfortable and help ease her pain.

I'm closing with a short story from my friend Randy at SONM:
"I participated in a summer school class at the Albuquerque Academy, where four of our Special Olympics athletes gave short presentations on the word “retarded.” Marla Gavurnik shared these words with the class.“Mental retardation causes me to learn, to communicate, to understand things, and to take care of myself at a slower pace.” When I laid my head down that night, I gave thought to the fullness of the day and what I had learned. Like Marilyn, we won’t get to choose when we leave this earth, but her life was a good reminder that we do have control of what contribution we will make to each day. Our God-given gifts will only make a difference to those around us if like Marilyn did, we share them. And, although I didn’t come into this world diagnosed with mental retardation like Marla, her words spoke to a need that I think many of us have felt lately - the need to roll at a slower pace, so we are able to do a better job of learning, communicating, understanding, and taking care of ourselves."

Amen to that. Brooke has taught us so many valuable lessons such as not taking things for granted and looking at things that other people often don't take the time to see. God is amazing...what a blessing it is to have been chosen to raise this angel.
Love you all.

Church

Brooke got to go to church today...the first time in 2009. She was so happy to see everyone and kept signing "friend" to everyone. She pretty much smiled all through church. And to top it off, Ma and Papa took her to Leal's for lunch afterwards. It doesn't get much better than that with her! Friends, enchilada's and a soapapila...she was a very content little girl! I'm glad she got "out of her cage" and back into the mainstream. It's about time. All we can do is put her back out there and see what happens. No harm in that!

Well, I just marked 2 items off my "to do list." That's always nice! I uploaded 465 vacation pictures and are having them printed at Walgreen's. I bet they hate me right now! I tried to make it easy on them by sending them in batches of 5. Ha. We'll see how they all turn out. I had a coupon, so it really wasn't a bad price. If you order 50 or more and use the code JULY4, it's only $.10 per print. I don't think I'll have to sell the car to pay for them. Yay. My job once I pick them up tomorrow is to finish Brooke's long-past due Disney scrapbook. I need to get it done before the new school semester starts in August. Having the summer off has been so nice!!!

I hope everyone had a nice, safe holiday! God Bless America!!!

No Cancer! But still bad blood.

We're back from Albq. after two very long days! We saw the Immunologist (Dr. Clayton) on Wednesday morning. He is our favorite doctor, no doubt. This guy is so nice and genuine and actually sits and talks to us. He doesn't appear to be rushed and is very good with Brooke. He is the one doctor we have who will call me to talk about anything I need to discuss with him. He's great! This is always an easy appointment, mainly filled with talking about what's gone on for the past year since they last saw us. He explained that people with CVID (Common Variable Immunodeficiency)are harder to diagnose. They are known to have Neutropenia and often times their lymph glands are different; often bigger. He said cancer is hard to diagnose in these people. He talked to us about cancer pretty frankly. Brooke is at higher risk for Lymphoma because she has CVID. We've known this since she was diagnosed with CVID at age 5. They did a lot of blood work on Brooke while we were there and drew blood for some specialized T-cell tests that had to be sent to the Mayo Clinic that day. It has to be there within 24 hours and the results take 3 weeks to get back.

We didn't do the PET scan but did a different type of CT scan instead. Dr. Libby changed his mind the day before our appointment. He didn't feel Brooke could do the PET scan and he told Mike he was comfortable just doing another CT. Brooke did awesome. There was lots of confusion about sedation, etc. so I told the CT tech before we left Clovis that I would handle it. Good ol Benadryl! It worked like a charm!! Will use this from now on instead of Valium like we used last time. It's so much easier on Brooke and has no side effects other than sleep. They used two kinds of contrasts; one that looked at her stomach, spleen, liver, kidney, etc. and the other that was for veins. We saw Dr. Libby on Thursday. The CT scan has no changed from 3 months ago so he was very pleased. He told us if she had Lymphoma, it would've grown, and it hadn't. PRAISE GOD!! We are so relieved! Her spleen is still big, which I figured based on the size of her belly. No more horse riding with Special Olympics due to the enlarged spleen. The Neutrophil levels remain at 100. No change. He asked Brooke why she had to be so difficult. We laughed and said, "Welcome to our world." Our precious angel has been intriguing doctor's for 19 years now! Dr. Libby told us the neutropenia may not be as bad as it seems due to how Brooke is tolerating it. (No sickness at all in 2009...KNOCK ON WOOD.) He advised us to get her back out in society. So we plan on taking her to church Sunday, which she is going to love! She's missed it so much!!! And back to school in August. We will see Dr. Libby the day after Brooke's dental surgery (hopefully) for a GCSF shot which will help boost her bone marrow and help her fight infection. He is worried that insurance won't cover it, so we may have to. It's about a $3,000 shot!! And we have a follow-up appointment with him in December where he will check her blood again for cancer-related items. He's still being very guarded and cautious with her and the risks of cancer. I told him "NO MORE C WORD OR L WORD FOR A LONG TIME!"

Dental surgery on July 15th. Please pray for Brooke as we prepare her for this. Surgery #13 I believe. Ugh. This one really makes me nervous! The risks are greater since she is neutropenic and bleeding is always a concern. I'm pulling her off her aspirin 7 days prior per Dr. Libby's advice. My hope is that possibly the teeth are part of the blood problem and that by getting them fixed/extracted maybe this will correct it? The mouth is an awfully germy place!

Thank you all for your continued prayers. Please keep them coming. I'm sure if Brooke could talk she would tell you all how much she loves you! And that you're her friend. Thank you for loving Brooke!!

Back to Reality!

The summer vacations are over and sadly - it's time to face reality once again. June was the "fun month" and July will be the "medical month." We wanted to give Brooke one month of nothing medical-related. A chance to have fun and just be a kid! She's had a blast so far!!! Mike and I just go back from our 4-day retreat and we had a good time. It's always nice to get away and spend time together. Brooke did well with the grandparents. She talked to me on the first day and then proceeded to pucker up and cry when I hung up. She didn't speak to me again until we were on our way home. She likes to "punish us" for leaving her. Ha. The dog (Brandi) did much better this time though...she got to stay home instead of being kenneled. No more doggie institutions for my baby!!

Three summer's ago we took a weekend trip to Bristol, TN to attend our first NASCAR race. My dad had been diagnosed with terminal cancer a couple of months prior. I can remember sitting on the plane and crying while looking out the window. I saw such peace and beauty in the clouds and I had never noticed that before. They seemed so serene and mystical and all I could think of was heaven and it's beauty. Now, every time I fly I feel so much closer to my dad. I know the beauty that I see doesn't even compare to what he must see every day. I told my mom on our flight to Orlando that "if it's this pretty from our view - think of how spectacular it must be for dad looking down?" What a comforting thought! How can anyone see God's beauty and not believe?

What a sad week. My heart goes out to Farrah Fawcett's family. Her dad lost his wife, then his daughter Linda to cancer and now his baby Farrah. And to Redmond...for the bad choices he's made and having to sit in a jail cell while mourning the loss of his mom. And to Ryan O'Neill...not sure what to say? And for Michael Jackson. I hope he has finally found whatever it was he was missing on this earth and is finally at peace. I pray for his children. That they don't become the vicitims of whatever possible fights that might arise. Money nor fame make people who they are...without God and a loving family nothing else matters. I wouldn't trade my life for anything. I am blessed.

Wednesday is the big day for us. Brooke see's the Immunologist at 9:00 for her yearly checkup and bloodwork. The PET scan and more blood work is scheduled for 11:00. Please pray that this test goes as planned. I know it will have to be adapated for Brooke and that is always challenging. There's no way she will drink the thick chaulkey stuff so I'm hoping they can thin it and run it through her veins while she's semi-sedated. Thursday we see Dr. Libby, the Hematologist. Hopefully, he will have the test results so we won't have to play the waiting game again. I don't want the PET scan to show anything...I want no red or blue to show up! NO SIGNS OF CANCER! I've been praying that the blood issue is gone. That all of the poisons from the past year are out of her system and that she is as good as new. And that the lymth node that was a little enlarged, is now small and out of sight!

Brooke continues to be happy and healthy. No sickness since January! In fact, we go see Dr. Luu tomorrow for two physicals and it's our first trip to see him in 2009! How is that possible for such a sick child? None of this makes any sense? Ask God to continue to bless Brooke with good health and laughter. Ask him to to continue to wrap his loving and protective arms around her now and for always. Pray that the upcoming dental surgery on July 15th goes as planned and that Brooke's recovery is infection-free and as painless as possible. Ask him to guide Mike and I as we continue to care for Brooke. And most especially...thank him for giving her to us. She is such a blessing in our lives.

Love you all. Please keep the prayers coming our way!

Surgery is scheduled

Today was tough...I had to schedule Brooke's dental surgery. Ick. It's set up for Wednesday, July 15th at UNM. The good thing is that they will go in and do EVERYTHING...fix the teeth, clean the teeth and even pull the wisdom tooth. It's just scary to know that most of the bodies germs live in the mouth so this puts Brooke at a higher risk for infection.

We see the Immunologist on the 1st, do blood work there and then have the PET scan later that morning. We're back at UNM on the 2nd to see the Hematologist. I emailed him today to give him the surgery date and to ask if there is anything we need to be doing right now to get Brooke ready for the surgery. He told us a few months ago she would need GCSF shots to help boost her blood levels up. Mike and I are struggling with the fact that our child, who has been healthier than she ever has before and who is super happy these days, is sick. It just doesn't make sense. I just keep praying that when we do the repeat blood work on the 1st - it comes back normal.Dr. Libby told us that sometimes these things can go away as quickly and mysteriously as they came on. I pray that this is the explanation for Brooke!

Mike and I leave tomorrow for a few "mommy and daddy days" away. Brooke is going to Ma and PaPa's and is excited. I hope her excitement lasts so these 70 years olds aren't worn to a frazzle trying to find ways to preoccupy her. Ha.

I want to close with something I read in a book a while back: "YOUR DAY GOES THE WAY THE CORNERS OF YOUR MOUTH TURN. LIFE IS LIKE A MIRROR. IF WE FROWN AT IT, IT FROWNS BACK. IF WE SMILE, IT RETURNS THE GREETING. Make each day count and remember to thank God for all of life's blessings!!