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.
Thursday, July 30, 2009
Wednesday, July 22, 2009
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.
Saturday, July 18, 2009
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.
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.
Monday, July 13, 2009
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!
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!
Thursday, July 9, 2009
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.
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.
Sunday, July 5, 2009
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!!!
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!!!
Friday, July 3, 2009
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!!
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!!
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