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!!