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.