Where to start??? Hmmmmm...we have our Denver appointment finally. June 16, 17 and 18. Immunology on the 16th where he will do allergy testing, Cardiology on the morning of the 17th and nothing else will be determined until we get there. It will be a very busy 3 days for sure!
Brooke had a CT scan Monday and it went remarkably well. She is such a trooper. I'm not even going to throw out all of the "stuff" we had to contend with; I'll just leave it at "it went remarkably well" and be done with it. YEA GENA!! I picked up the results on my lunch hour Tuesday and spent the next hour having one of the biggest melt-downs I've had in a LONG time. Not sure where all the hysteria came from but it never fails that it always happens at work and in front of my boss. Forget trying to put on the air of being tough...BLEW THAT LONG AGO! Ha. Long story short - it's ok. I'm ok. Everything we knew was wrong is still wrong, so no shockers there and the two new developments aren't anything to worry about according to the OB/GYN. Thank goodness for that! Mike mailed the disc to UNM today so they can look at the images. I sometimes just shake my head in disbelief of everything this little girl endures. And to do so with her happy disposition and a smile on her face. Never any complaints from her. How in the world does she do it? She is my hero!
I took Brooke's echo discs by UNM and Presby. Friday. Brooke's "former" cardiologist (he is a pediatric doctor, about to retire, and is at Presby.) has called me 3 times to discuss these findings. I love DR. BERMAN!!! LOVE-LOVE-LOVE his kind and caring ways. Praying that our new cardiologist at UNM will be the same! If Dr. Berman wasn't going to retire - I would seriously consider staying with him, but since everything we've ever done and all of our other doctors are at UNM --- it just makes sense to be there. You go where they know you. And I don't have enough energy to "start over" with a new hospital and group of doctors. We're currently waiting on an appt. with the new doctor at UNM.
10 days until our vacation...very much looking forward to spending time with Mike in such a beautiful place. We need to decompress. Please pray for Brooke. For her health and well-being while we're gone. Pray for solutions to the problems. For resolution. For strength for all of us.
Wednesday, May 26, 2010
Friday, May 21, 2010
Brooke Update / SONM
Hello. Just wanted to say that Brooke is doing fine. She's not in the hospital and not in criticial condition like one of the stories going around says. At the moment, she's laying on the couch doing an infusion that will get her ready to go to Albq. in a couple of hours. She's feeling good except for trying to get over a UTI she's had. Nothing is any different than it has been. She's considerably healthy-looking considering some of the things going on inside her body.
As I mentioned, we are leaving later this morning to go to Albq. I'm taking a copy of her Echocardiogram to her Cardiologist at Presbyterian and a copy to our doctors at UNM, who will have it read by a Cardiologist there. I talked to her Cardiologist Wednesday and he helped ease my mind a bit. He said there were several pieces of the results that were inconclusive so not to get worked up until another test can be done. I hope to have some sort of direction by Monday or Tuesday. I cannot figure out why the medical process is so slow? It blows my mind! Do you know, if I hadn't gone to the hospital on Monday and picked up the Echo test myself, that I most likely still wouldn't know the result? To date, NO ONE has called me regarding the results. NO ONE. I scanned them and sent them to our doctor in Albq. or else they might not have known? Then I faxed them to Brooke's Cardiologist. What is wrong with this picture? What happens when a person doesn't take charge of their own medical care? Maybe I should open a medical consultation business?
Tonight is opening ceremonies for Special Olympics New Mexico state track and field games. Brooke absolutely loves this! One of her most favorite people is a lady named Randy Mascorella. I've talked about her before. Brooke loves Randy and Randy loves Brooke. She's already asking for the "special O." This is where all of the athletes stand up to do a standing ovation but they put there arms in the shape of an O and scream OOOOOOOOOOOO. They love it and it's become a trademark of Randy's whenever Brooke see's her. We have to hunt her down throughout the course of the weekend to get OOOOOOOO's done. It's cute. Most of the Hankins family will be there, including three that have never gotten to attend before. I highly recommend everyone trying to see an event like this at least once in your life. It is incredible...too incredible to put into words. These people are true examples for how we should act! My mom will miss this year because Briana's wedding shower is tomorrow in Friona. Our thoughts will be with them there but I'm sure we'll be having fun in Albq. Brooke competes in the morning at 8:00 (tennis ball throw and 25 meter walk), then it's on to the Olympic Village at 10:00 for all of the goodies, and finally over to the Special Orchestra so Brooke can get her groove on. This is an awesome sight!
Please continue to pray for Brooke. For guidance and direction, knowledge and compassion for the doctors who will be taking care of her. And you might throw in a prayer for promptness on everyone's part so this momma doesn't have to use her "not so nice" voice with anyone. Ha. Love you all!
As I mentioned, we are leaving later this morning to go to Albq. I'm taking a copy of her Echocardiogram to her Cardiologist at Presbyterian and a copy to our doctors at UNM, who will have it read by a Cardiologist there. I talked to her Cardiologist Wednesday and he helped ease my mind a bit. He said there were several pieces of the results that were inconclusive so not to get worked up until another test can be done. I hope to have some sort of direction by Monday or Tuesday. I cannot figure out why the medical process is so slow? It blows my mind! Do you know, if I hadn't gone to the hospital on Monday and picked up the Echo test myself, that I most likely still wouldn't know the result? To date, NO ONE has called me regarding the results. NO ONE. I scanned them and sent them to our doctor in Albq. or else they might not have known? Then I faxed them to Brooke's Cardiologist. What is wrong with this picture? What happens when a person doesn't take charge of their own medical care? Maybe I should open a medical consultation business?
Tonight is opening ceremonies for Special Olympics New Mexico state track and field games. Brooke absolutely loves this! One of her most favorite people is a lady named Randy Mascorella. I've talked about her before. Brooke loves Randy and Randy loves Brooke. She's already asking for the "special O." This is where all of the athletes stand up to do a standing ovation but they put there arms in the shape of an O and scream OOOOOOOOOOOO. They love it and it's become a trademark of Randy's whenever Brooke see's her. We have to hunt her down throughout the course of the weekend to get OOOOOOOO's done. It's cute. Most of the Hankins family will be there, including three that have never gotten to attend before. I highly recommend everyone trying to see an event like this at least once in your life. It is incredible...too incredible to put into words. These people are true examples for how we should act! My mom will miss this year because Briana's wedding shower is tomorrow in Friona. Our thoughts will be with them there but I'm sure we'll be having fun in Albq. Brooke competes in the morning at 8:00 (tennis ball throw and 25 meter walk), then it's on to the Olympic Village at 10:00 for all of the goodies, and finally over to the Special Orchestra so Brooke can get her groove on. This is an awesome sight!
Please continue to pray for Brooke. For guidance and direction, knowledge and compassion for the doctors who will be taking care of her. And you might throw in a prayer for promptness on everyone's part so this momma doesn't have to use her "not so nice" voice with anyone. Ha. Love you all!
Monday, May 17, 2010
Raunchy Day!
Today has been rough. Brooke had an Echocardiogram done at PRMC on Friday and I got the test results today...not good. It shows either a clot or a Myxoma (benign tumor) in her heart. I'm waiting to hear from our doctors as to what the next steps will be. I assume we will be going to a Cardiologist for a second opinion. Thank goodness the Infectious Disease doctor is looking at EVERYTHING! No one else has even mentioned checking the heart until she came along. I think she is a true blessing for us!
Brooke has a CT Scan set for next Monday here in town (not related to the heart test). The ID doc feels the spot on the lung and streaks in the kidneys from previous CT scans need to be re-evaluated. Hooray...FINALLY! No tuberculosis - good test result with that one. We're still waiting to hear from Denver on our appt. there. I'm praying for May 26, 27 and 28; this way we could get it done after school ends and before we leave for vacation. Wouldn't it be nice to have everything taken care of PRIOR to going to paradise? Please-please-please!!
Brooke is standing here signing mommy on MY chin. Headache. Night-night. She wants me to take her to bed. Sweet girl. Please pray for us. It's hard to understand why things keep continously happening to Brooke, but we know God is in control and she is in His hands. We serve an awesome and compassionate God. I know He is hurting right along with us.
Brooke has a CT Scan set for next Monday here in town (not related to the heart test). The ID doc feels the spot on the lung and streaks in the kidneys from previous CT scans need to be re-evaluated. Hooray...FINALLY! No tuberculosis - good test result with that one. We're still waiting to hear from Denver on our appt. there. I'm praying for May 26, 27 and 28; this way we could get it done after school ends and before we leave for vacation. Wouldn't it be nice to have everything taken care of PRIOR to going to paradise? Please-please-please!!
Brooke is standing here signing mommy on MY chin. Headache. Night-night. She wants me to take her to bed. Sweet girl. Please pray for us. It's hard to understand why things keep continously happening to Brooke, but we know God is in control and she is in His hands. We serve an awesome and compassionate God. I know He is hurting right along with us.
Sunday, May 9, 2010
This-n-That
How in the world does Michelle Duggar do it? 19 kids...and still counting? With Baby Josie home, I can't imagine her anxiety. She seems to be such a kind, sweet, gentle person and patient. My thoughts and prayers to her and the rest of the family as they care for their preemie. The thought of having to keep a 20 person house germ-free scares me for them! What an inspiring family...yet I am content with my one precious child.
Brooke is doing well. She's still on a bowling kick but we think it's because she wants to go see her Special Olympic friends. She apparently has her "seasons" mixed up...state track meet is in two weeks in Albq., but please don't tell her...she'll drive us nuts asking every 2 minutes! We have borrowed the bowling ramp from Pat and Dave and plan on taking her bowling some evening. And the plan is to go to state games even though practice this year for Brooke has been sparce. She's had zero time with the team, which is what she's missing right now. She loves the state games and I think it is just what she needs to boost her people needs. She is so lonely sitting at this house!
On the healthfront, I'm in the process of scheduling some of the tests that the Infectious Disease doctor in Albq. wants done. 3 out of the 4 can be done locally so anything to save us a trip to Albq. has my vote. Our Denver trip is stuck somewhere in the "getting insurance approval" phase. You know how that goes! I did learn that when we go it will be for a Wednesday afternoon, Thursday and Friday. Looks like it may be June!
Hawaii is right around the corner. In fact, we'll be there a month from now! We're so excited. Please pray for continued good health for Brooke and for the grandparents who will be watching her (both sets). Pray that Mike and I are able to unwind and relax and enjoy the beautiful setting. Pray for Brooke not to worry too much about us, and not to drive everyone nuts asking where we are. Ha. I am so thankful for our support system that is allowing us to be able to make this trip so far from home.
Happy Mother's Day. What a truly blessed job it is!!
Brooke is doing well. She's still on a bowling kick but we think it's because she wants to go see her Special Olympic friends. She apparently has her "seasons" mixed up...state track meet is in two weeks in Albq., but please don't tell her...she'll drive us nuts asking every 2 minutes! We have borrowed the bowling ramp from Pat and Dave and plan on taking her bowling some evening. And the plan is to go to state games even though practice this year for Brooke has been sparce. She's had zero time with the team, which is what she's missing right now. She loves the state games and I think it is just what she needs to boost her people needs. She is so lonely sitting at this house!
On the healthfront, I'm in the process of scheduling some of the tests that the Infectious Disease doctor in Albq. wants done. 3 out of the 4 can be done locally so anything to save us a trip to Albq. has my vote. Our Denver trip is stuck somewhere in the "getting insurance approval" phase. You know how that goes! I did learn that when we go it will be for a Wednesday afternoon, Thursday and Friday. Looks like it may be June!
Hawaii is right around the corner. In fact, we'll be there a month from now! We're so excited. Please pray for continued good health for Brooke and for the grandparents who will be watching her (both sets). Pray that Mike and I are able to unwind and relax and enjoy the beautiful setting. Pray for Brooke not to worry too much about us, and not to drive everyone nuts asking where we are. Ha. I am so thankful for our support system that is allowing us to be able to make this trip so far from home.
Happy Mother's Day. What a truly blessed job it is!!
Friday, April 30, 2010
The Girl Knows What She Wants!
I'm in the computer room after supper working on a research paper and Brooke comes in with a basketball asking to go outside to play. I explained to her that it was windy and that she would have to play in the entry way instead. A few minutes later she shows up with my car keys wearing her yellow hat, with her yellow jacket on with the hood pulled over her hat, her sunglasses on and toting a bag full of clothes, books, musical toys, etc. I assume at this point that we ARE going somewhere, so I go put Brandi outside, turn off the lights, etc. Brooke is already in the mustang in the pitch black garage. The bag of goodies is in the back seat. She's ready to go. So we drive by the high school to see if we can spot daddy at the track meet. (We see him but he never see's us.) Then we cruise on over to Twin Cronnie for our nightly caffeine, and then slowly make our way back home. This girl knows what she wants and how to get her way!
She had a good day today with Nanny...slept, ate, played and barked orders only a grandmother will adhere to. Ha. She is pale and very tired lately, but overall doing ok since the Neupogen shot. Pray for no side effects!
Love you all!!!!
She had a good day today with Nanny...slept, ate, played and barked orders only a grandmother will adhere to. Ha. She is pale and very tired lately, but overall doing ok since the Neupogen shot. Pray for no side effects!
Love you all!!!!
Wednesday, April 28, 2010
What's up with this blood?
We saw the Hematologist today for a follow-up from the Neupogen shot on the 15th. Mike took Brooke to do bloodwork on Monday so Dr. Curry would have the results for today's visit. Ugh! Double Ugh!!! The neutrophil levels are only slightly up. From 0.2 to 0.4, which is nowhere near normal. Guess this is all the $3,000 shot can do. Not very impressive. The other blood results looked about as dim. So...she got another Neupogen shot today and will take them monthly from this point forward to see if we can get her white blood count to come up. That would be nice!! Please pray for no side effects with this shot.
I walked out the door of the cancer center after Brooke's appointment and broke out in tears. It is so frustrating not to be able to help even when you know you're doing everything you can to try to make it better. It's hard to accept that sometimes there isn't anything at all you can do. Very frustrating!
I talked to Denver today and the insurance issues are trying to be dealt with at this point. Pray for resolution and a quick "ok" so we can go and get the visit done and over with. I'm ready to get these things underway so we can get closer to possibly having an answer. Wouldn't that be nice!!
Thank you for your prayers. Please keep them coming our way.
I walked out the door of the cancer center after Brooke's appointment and broke out in tears. It is so frustrating not to be able to help even when you know you're doing everything you can to try to make it better. It's hard to accept that sometimes there isn't anything at all you can do. Very frustrating!
I talked to Denver today and the insurance issues are trying to be dealt with at this point. Pray for resolution and a quick "ok" so we can go and get the visit done and over with. I'm ready to get these things underway so we can get closer to possibly having an answer. Wouldn't that be nice!!
Thank you for your prayers. Please keep them coming our way.
Tuesday, April 27, 2010
Blog Entry # 100!
WOW...this is my 100th blog. My hope is that each of you have enjoyed reading them half as much as I have enjoyed writing them! Thanks to my loyal followers for sticking with me. YOU GUYS ROCK!
Brooke continues to do well. She is finished with antibiotic #1 and has 3-4 days left on antibiotic #2. We feel two strong antibiotics really have helped "knock out" some of the issues she's been fighting. No reaction to the GCSF "Neupogen" shot...YAY! I had a call from Denver yesterday, called them back today...waiting. Wouldn't it be nice to go now and not have to deal with it after our big trip in June. Fingers crossed.
I really don't have much else to say. Two more weeks of school (ready to be done; not sure about the summer session yet), off to Vegas Sunday through Wednesday for work (yes...for work!), and counting down the weeks to Hawaii. Mike and I really starting to get excited. My goal is to get as caught up on sleep as possible between now and when we leave so I'm not completely worn out once we get there. We'll see how that goes.
I would like to make a special request: Please say a prayer for everyone tonight when you go to bed. Pray for people with cancer. For people struggling finacially. For addicts. For people fighting depression. For our government. For people struggling to find their way in life. Pray for a better you, a better me, and for peace. Pray for healing. For our blessings. For life. We have so much to be thankful for...so let's thank God!
Love you all -
Gena
Brooke continues to do well. She is finished with antibiotic #1 and has 3-4 days left on antibiotic #2. We feel two strong antibiotics really have helped "knock out" some of the issues she's been fighting. No reaction to the GCSF "Neupogen" shot...YAY! I had a call from Denver yesterday, called them back today...waiting. Wouldn't it be nice to go now and not have to deal with it after our big trip in June. Fingers crossed.
I really don't have much else to say. Two more weeks of school (ready to be done; not sure about the summer session yet), off to Vegas Sunday through Wednesday for work (yes...for work!), and counting down the weeks to Hawaii. Mike and I really starting to get excited. My goal is to get as caught up on sleep as possible between now and when we leave so I'm not completely worn out once we get there. We'll see how that goes.
I would like to make a special request: Please say a prayer for everyone tonight when you go to bed. Pray for people with cancer. For people struggling finacially. For addicts. For people fighting depression. For our government. For people struggling to find their way in life. Pray for a better you, a better me, and for peace. Pray for healing. For our blessings. For life. We have so much to be thankful for...so let's thank God!
Love you all -
Gena
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