We saw our Hematologist in Albq. yesterday and honestly...I'm not quiet sure what to make of the appointment? He didn't see anything in her bloodwork that perked up his ears. He said the slightly elevated liver levels weren't anything he would be concerned over and the specialized protein test that our Immunologist ordered (that came back normal) was the one test he would've done had it not already been done. It basically showed that Brooke makes proteins in her blood, which is a good thing. He did a thorough check of her lympth nodes and looked at the spots she has on various parts of her body. He told us since she isn't sick or having recurring infections he didn't see anything that alarmed him, so he didn't feel the need to do anything. He told us to see him as needed. I guess the frustrating thing is that he didn't seem to understand why we were there, so it was obvious he didn't receive the information I faxed him earlier in the week. He had to ask us if we had determined last year that her spleen was enlarged. SERIOUSLY? What happened to reading up on the patient PRIOR to walking in to examine them?
OK, so now what? Is it normal for a blood level to be going out the roof and nothing actually be wrong? I understand it being puzzling to specialists that she not be sick or have recurring infections, but shouldn't all of these puzzle pieces start adding up to something? I'm stunned. I called our Immunologist yesterday and left word for him to call me. I guess the ball is back in his court.
I'm praying for guidance; for direction. I'm asking God to help me figure out the next steps. Please pray with me.
Friday, March 12, 2010
Wednesday, March 10, 2010
Birthday Fun - Time for tests - Radio?
Can you believe my baby girl turned 20 yesterday? Where does time go? We had a birthday party with family on Sunday afternoon, took her to Leal's Monday night so they could sing to her, and Mike took her to Rib Crib last night. (Rib Crib is a father-daughter outing that usually occurs on Tuesdays when I'm at school. I don't like Rib Crib.) Brooke had a good time with all of the celebrations taking place! And I'm sure we'll be due for "another birthday party" in a month or so.
Tomorrow is Brooke's doctor's appointment in Albq. Please pray for us as we travel to Edgewood tonight (to the Hankins Hotel - ha) and then into Albq. tomorrow morning. Pray for knowledge, patience and humility on behalf of the staff at the cancer center. For kindness, compassion and a tender heart from Doctor Libby, and for patience and tolerance for me. It appears that my "tolerance meter" stays pretty full these days. I'm working on doing better.
Did you ever watch the movie RADIO? Remember the scene where Coach Jones tells Radio to pick out some pants to wear? And Radio holds the phone out to the pants and says "Are these ok Coach Jones?" Last night Brooke was talking to Uncle Rick and Aunt Vera on the phone and she held the phone out to her new toys as to show them what she got. Mike about fell off the couch laughing. That's a classic!!! What a funny girl.
I hope everyone has a blessed day. May God be with you every step of your day.
Tomorrow is Brooke's doctor's appointment in Albq. Please pray for us as we travel to Edgewood tonight (to the Hankins Hotel - ha) and then into Albq. tomorrow morning. Pray for knowledge, patience and humility on behalf of the staff at the cancer center. For kindness, compassion and a tender heart from Doctor Libby, and for patience and tolerance for me. It appears that my "tolerance meter" stays pretty full these days. I'm working on doing better.
Did you ever watch the movie RADIO? Remember the scene where Coach Jones tells Radio to pick out some pants to wear? And Radio holds the phone out to the pants and says "Are these ok Coach Jones?" Last night Brooke was talking to Uncle Rick and Aunt Vera on the phone and she held the phone out to her new toys as to show them what she got. Mike about fell off the couch laughing. That's a classic!!! What a funny girl.
I hope everyone has a blessed day. May God be with you every step of your day.
Saturday, March 6, 2010
Repeated blood test results - We've got a plan - INR results
We got the results from the blood "re-test" that we did last Friday...the IgM is 100 higher than it was a month ago. DANG! She is sitting at 1810 and 263 is considered high. What is going on? The other protein test that our Immunologist ordered came back normal - Praise God! I faxed all results to our Hematologist in Albq. Friday morning so he will have some time to think about it before our appointment on the 11th. Hope he got it!
I stayed home with Brooke Thursday for some mommy time. There's days every so often that she needs her mom and nothing else will do. Thursday was one of those days and honestly, I needed it too. A little decompression never hurts! She did a lot of sleeping, we went for a ride in her yellow car, hit happy hour for a root beer, and then spent an hour outside. It was beautiful; 72 degrees with some wind, but much too nice to be inside, so we did bubbles and danced and enjoyed the weather. What a nice day!
On Friday, we saw our Primary Care Doctor to bring him on board with what's going on and to help establish a baseline for Brooke and her care. We had only seen him once prior to this appointment so we're getting used to him and he's trying to figure us out. (Gotta wish him luck there! Ha!!)He's super sweet and very thorough, which I appreciate. He was complimentary on the path we're taking with Brooke. It's nice to hear that from a doctor because we wonder sometimes if what we're doing is enough. Or even if we're going in the right direction. He feels we are, and I appreciated the vote of confidence from him. It's a guessing game a lot of the time. He said we need to continue to operate in preventive mode with Brooke and address the blood issues with the Hematologist. I feel like we both have a better understanding now as to what the game plan is and what his role is. I'm hoping our new "team of local doctors" and their roles in Brooke's care will help take some of the pressure off Dr. Libby. We've got a plan! HOORAY!!!
The home healthcare nurse came Friday afternoon to take Brooke's monthly INR. OK, so the initial goal was to hit 2.0-2.5, which we never did. 1.8 is as high as we could get it so this became Brooke's norm. In January and again in February it was down to 1.4. Now, as of Friday, it's at 2.2. What's up with that? I've always heard people talk about how crazy Coumadin is and I agree. There is no rhyme or reason for it going up or down in Brooke's case because her diet hasn't changed. I have become a vegetable policeman getting onto her when she eats certain things. In fact, she gets to eat very little green or leafy vegetables. Spinach once since August, and it was a very small amount. She loves spinach! I suggested to the nurse that she ask the doctor if we can recheck the levels in a week or two instead of waiting the full month. With all of the other blood issues going on...we've got to be careful. 2.2 is pretty thin blood, or at least it is for Brooke! And since I don't know what the IgM means...we can't assume they aren't connected. Dr. Libby will have to figure this out for us!
Thank you God for another beautiful, sunshiney day! I love it. Birthday party tomorrow and Brooke is about to drive me insane asking for it. That's another blog for another day! We appreciate your friendship and your prayers.
I stayed home with Brooke Thursday for some mommy time. There's days every so often that she needs her mom and nothing else will do. Thursday was one of those days and honestly, I needed it too. A little decompression never hurts! She did a lot of sleeping, we went for a ride in her yellow car, hit happy hour for a root beer, and then spent an hour outside. It was beautiful; 72 degrees with some wind, but much too nice to be inside, so we did bubbles and danced and enjoyed the weather. What a nice day!
On Friday, we saw our Primary Care Doctor to bring him on board with what's going on and to help establish a baseline for Brooke and her care. We had only seen him once prior to this appointment so we're getting used to him and he's trying to figure us out. (Gotta wish him luck there! Ha!!)He's super sweet and very thorough, which I appreciate. He was complimentary on the path we're taking with Brooke. It's nice to hear that from a doctor because we wonder sometimes if what we're doing is enough. Or even if we're going in the right direction. He feels we are, and I appreciated the vote of confidence from him. It's a guessing game a lot of the time. He said we need to continue to operate in preventive mode with Brooke and address the blood issues with the Hematologist. I feel like we both have a better understanding now as to what the game plan is and what his role is. I'm hoping our new "team of local doctors" and their roles in Brooke's care will help take some of the pressure off Dr. Libby. We've got a plan! HOORAY!!!
The home healthcare nurse came Friday afternoon to take Brooke's monthly INR. OK, so the initial goal was to hit 2.0-2.5, which we never did. 1.8 is as high as we could get it so this became Brooke's norm. In January and again in February it was down to 1.4. Now, as of Friday, it's at 2.2. What's up with that? I've always heard people talk about how crazy Coumadin is and I agree. There is no rhyme or reason for it going up or down in Brooke's case because her diet hasn't changed. I have become a vegetable policeman getting onto her when she eats certain things. In fact, she gets to eat very little green or leafy vegetables. Spinach once since August, and it was a very small amount. She loves spinach! I suggested to the nurse that she ask the doctor if we can recheck the levels in a week or two instead of waiting the full month. With all of the other blood issues going on...we've got to be careful. 2.2 is pretty thin blood, or at least it is for Brooke! And since I don't know what the IgM means...we can't assume they aren't connected. Dr. Libby will have to figure this out for us!
Thank you God for another beautiful, sunshiney day! I love it. Birthday party tomorrow and Brooke is about to drive me insane asking for it. That's another blog for another day! We appreciate your friendship and your prayers.
Wednesday, March 3, 2010
Nightly Ritual - Not Feeling Well - Upcoming Birthday
Brooke has gotten really creative about what she brings to bed each night. Last night she shows up with a large ziploc bag (very large ziploc bag) and in it was the following: 1 Consumer Digest magazine ranking the best cars of 2010 (Sorry Toyota!), Mike's latest copy of Coach Magazine, a JCPenney sales book, the Springhill flower and shrub buying guide, a wet rag inside of a smaller ziploc bag used for her headache earlier in the day and the heating pad. Everything (other than the heating pad) was placed on the floor beside the bed, which I'm suprised she allowed. Usually everything sleeps with us. Funny kid! And have I ever mentioned that we think she has night vision? She has the most incredible night-sight! It's eery.
Brooke hasn't been feeling well for the past several days. There's nothing "visibly wrong" but we can tell she's not up to par. She seems a littler warmer than usual and continues to have head and stomach pains. I would love to have x-ray vision so I could take a look into her body to see what's wrong. Where is Superman when you need him?
In order to get Brooke's off of not feeling well, which can easily lead to a complete melt-down reqiring either mom or dad, I had to get creative yesterday and come up with a list of fun things to keep her occupied. She had the fun task of creating a birthday chain so we can count down to the 9th. She also is working on personalized birthday cards for the guests. The party is Sunday and she's super excited! Finally...a birthday party with an actual birthday! Ha. We're having the family over and a few friends.
Off to work I go...have a wonderful day! I pray for peace, love and happiness for each of you. May God give you the comfort and strength needed to handle your day.
Brooke hasn't been feeling well for the past several days. There's nothing "visibly wrong" but we can tell she's not up to par. She seems a littler warmer than usual and continues to have head and stomach pains. I would love to have x-ray vision so I could take a look into her body to see what's wrong. Where is Superman when you need him?
In order to get Brooke's off of not feeling well, which can easily lead to a complete melt-down reqiring either mom or dad, I had to get creative yesterday and come up with a list of fun things to keep her occupied. She had the fun task of creating a birthday chain so we can count down to the 9th. She also is working on personalized birthday cards for the guests. The party is Sunday and she's super excited! Finally...a birthday party with an actual birthday! Ha. We're having the family over and a few friends.
Off to work I go...have a wonderful day! I pray for peace, love and happiness for each of you. May God give you the comfort and strength needed to handle your day.
Friday, February 26, 2010
Work - School - Prayers - Name that Computer
Hello all. Yes, I'm still around. It's been a while since I posted and for that I apologize. No excuse except for being busy. Did you hear or read about ENMR•Plateau being awarded stimulus money for Broadband projects? Very cool!! There's a lot of work that goes into putting an Broadband Stimulus application together, especially when there is such a small window in which to get it done. WAY TO GO PLATEAU! You all know who you are and you make me proud! This is a HUGE project and will require a lot of work over the next 3 years. Lots going on at work! I get tired just thinking about it, but it is awfully exciting.
I'm in another semester at Wayland now and taking two classes. It' s hard. I haven't taken two in a while and forgot how tired they make you. Working all day then going straight to class and listening to 4 hours worth of lecture makes for a very long day!! And it's just week 1 of 12. OH NO!! 5 more after I finish these two...SWEET! I had signed up for an online class at CCC but dropped it on day one after learning that it wouldn't count towards my degree. I'm going after the credits that are left and will try to get this thing done once and for all. I'm soooooooo ready!!!
Brooke is doing well. She's been fairly healthy this winter considering what everyone else has had. We seem to struggle more with runney noses and bumps that don't heal. It seems like she really struggles to keep one step ahead of healthy. We got some bad news yesterday regarding some blood tests she had done the end of January. So, today we did a repeat test and added an additional blood protein test to ensure the results were correct and not lab error. I can either keep it simple and say "pray for answers for the added blood issues" or I could try to explain what they are. I think I'll take a stab at my blood protein explanation. Here goes: Brooke's immune deficiency is with IGG, but there are other proteins in the blood, such as IGE, IGA, IGM and IGD. The IGM is showing to be very high. Very! It was fairly high a year ago, but was never addressed due to the neutropenia and other issues she had at the time. Now it's 4 times higher than it was then and without explanation. My research today showed the usual 'C' word, inflamation issues, auto immune problems, etc. so I quickly decided to stop researching. No need to go borrowing trouble! We'll see what the latest tests show when they come back and go from there. We have an appointment with our Hematologist in Albq. on 3-11 so he can start following these blood issues again. It's needed. We need someone to monitor everything; the blood, the liver, the spleen, etc. Please pray for kind, caring people. For knowledge. For confidence. And for humility.
On a lighter note...we got a new computer and with the lightening fast fiber Internet from Plateau, all I can say is WOW! (Did that sound like a commercial or what? Ha.) I have no words for how things are today versus this time last week. I love things that go fast (that includes Brooke's car). Our other computer was about to be thrown in the street and ran over multiple times by both Mike and myself. I haven't named the new girl yet but can honestly say that Big Bertha is not missed in the least!! If anyone has any thoughts on what to name this beast...please share. I believe in naming my cars and computers...that way I know whose name to yell when I get mad. Ha.
I'm in another semester at Wayland now and taking two classes. It' s hard. I haven't taken two in a while and forgot how tired they make you. Working all day then going straight to class and listening to 4 hours worth of lecture makes for a very long day!! And it's just week 1 of 12. OH NO!! 5 more after I finish these two...SWEET! I had signed up for an online class at CCC but dropped it on day one after learning that it wouldn't count towards my degree. I'm going after the credits that are left and will try to get this thing done once and for all. I'm soooooooo ready!!!
Brooke is doing well. She's been fairly healthy this winter considering what everyone else has had. We seem to struggle more with runney noses and bumps that don't heal. It seems like she really struggles to keep one step ahead of healthy. We got some bad news yesterday regarding some blood tests she had done the end of January. So, today we did a repeat test and added an additional blood protein test to ensure the results were correct and not lab error. I can either keep it simple and say "pray for answers for the added blood issues" or I could try to explain what they are. I think I'll take a stab at my blood protein explanation. Here goes: Brooke's immune deficiency is with IGG, but there are other proteins in the blood, such as IGE, IGA, IGM and IGD. The IGM is showing to be very high. Very! It was fairly high a year ago, but was never addressed due to the neutropenia and other issues she had at the time. Now it's 4 times higher than it was then and without explanation. My research today showed the usual 'C' word, inflamation issues, auto immune problems, etc. so I quickly decided to stop researching. No need to go borrowing trouble! We'll see what the latest tests show when they come back and go from there. We have an appointment with our Hematologist in Albq. on 3-11 so he can start following these blood issues again. It's needed. We need someone to monitor everything; the blood, the liver, the spleen, etc. Please pray for kind, caring people. For knowledge. For confidence. And for humility.
On a lighter note...we got a new computer and with the lightening fast fiber Internet from Plateau, all I can say is WOW! (Did that sound like a commercial or what? Ha.) I have no words for how things are today versus this time last week. I love things that go fast (that includes Brooke's car). Our other computer was about to be thrown in the street and ran over multiple times by both Mike and myself. I haven't named the new girl yet but can honestly say that Big Bertha is not missed in the least!! If anyone has any thoughts on what to name this beast...please share. I believe in naming my cars and computers...that way I know whose name to yell when I get mad. Ha.
Monday, January 18, 2010
Computer anger - School - Vacation - Brooke
I hate our computer. It's old, slow, cranky and I find myself wanting to hurt it almost daily now. I spent 3 days this weekend scanning, defragmenting, organizing, deleting, cleaning...just trying to make it run better. No such luck. Yes, I know we need a new computer. "Big Bertha" is 7 years old now, but I'm just trying to buy her a little more time. Not sure why? Guess I'm just being sentimental?? Or cheap??
I start an online class tomorrow through CCC so my blogging may slow down even more than it already has. Sorry. Between that, my business class at WBU, my exercise class on Thursday nights, working, taking care of Mike and Brooke and dieting...there's just not much time left. I'm still trying to figure out how to work more exercise in? I know one thing...this body AIN'T GOING TO HAWAII IN ITS CURRENT STATE! Yep, we're going to Hawaii, but don't tell Brooke. We NEVER tell Brooke about going places until we're physically in the car going. She'll drive us nuts otherwise! And in this case, she'll find a way to get sick. Ha. This is a mommy and daddy only trip! A retreat into paradise. We thought we better do it now versus later since Brooke is getting more clingey the older she gets and our support staff aren't getting any younger. (No offense F-F and P...we certainly couldn't do it without you guys!) We're going to Oahu for 7 days and 6 nights in early June and are super excited!! If anyone has been and has suggestions...please let me know! I'm having fun researching the island, the food, and the people. I would love to hear from you!!
Brooke continues to do well - PRAISE GOD! We took her to eat at Leal's tonight (in the Mustang) and as soon as we finished - she raised her hand. That means she wants the waiter to come over to our table so she can sign "soapapilla." She made up a sign for it about 6 months ago, which is goofy in itself, but it works. The hand raising really cracks us up. She even does it at home when she wants something. Silly kid! Well...she finally wore us down and we bought her the kitchen set that Santa didn't bring her. Mike and I spent 2 hours putting it together yesterday. I've never seen so many pieces! Ugh!!! But she loves it and it's small enough to put inside her tent, or in her closet when she grows tired of it. Why is it she always wants the BIG toys that take up so much space? I researched kitchen sets looking for one that wasn't big. This one is nice only cost $35!
I better go...a certain little girl is wanting her mommy to go to bed with her. Have a blessed night!!!
Aloha
I start an online class tomorrow through CCC so my blogging may slow down even more than it already has. Sorry. Between that, my business class at WBU, my exercise class on Thursday nights, working, taking care of Mike and Brooke and dieting...there's just not much time left. I'm still trying to figure out how to work more exercise in? I know one thing...this body AIN'T GOING TO HAWAII IN ITS CURRENT STATE! Yep, we're going to Hawaii, but don't tell Brooke. We NEVER tell Brooke about going places until we're physically in the car going. She'll drive us nuts otherwise! And in this case, she'll find a way to get sick. Ha. This is a mommy and daddy only trip! A retreat into paradise. We thought we better do it now versus later since Brooke is getting more clingey the older she gets and our support staff aren't getting any younger. (No offense F-F and P...we certainly couldn't do it without you guys!) We're going to Oahu for 7 days and 6 nights in early June and are super excited!! If anyone has been and has suggestions...please let me know! I'm having fun researching the island, the food, and the people. I would love to hear from you!!
Brooke continues to do well - PRAISE GOD! We took her to eat at Leal's tonight (in the Mustang) and as soon as we finished - she raised her hand. That means she wants the waiter to come over to our table so she can sign "soapapilla." She made up a sign for it about 6 months ago, which is goofy in itself, but it works. The hand raising really cracks us up. She even does it at home when she wants something. Silly kid! Well...she finally wore us down and we bought her the kitchen set that Santa didn't bring her. Mike and I spent 2 hours putting it together yesterday. I've never seen so many pieces! Ugh!!! But she loves it and it's small enough to put inside her tent, or in her closet when she grows tired of it. Why is it she always wants the BIG toys that take up so much space? I researched kitchen sets looking for one that wasn't big. This one is nice only cost $35!
I better go...a certain little girl is wanting her mommy to go to bed with her. Have a blessed night!!!
Aloha
Tuesday, January 12, 2010
Eating at a car wash - Diet - No Thanks
OK, remember the Progresso soup ad? The one where Brooke kept telling us to call and order her some soup? Now she's carrying around one of those coupon books(the ones you buy from kids at school) asking to go eat at A-Key car wash. No matter what we say, we can't seem to convince her that it's not somewhere to eat. Any thoughts? Anyone? This silly girl is driving us nuts!
We're all 3 back on our healthy eating plan. And as much as Brooke "thinks" she's starving...she's actually doing very well. Her obsession with what she can no longer have is to the point of her picking out food in magazines, bringing them to me, and telling me "MMMMMMMM" and pointing to herself. Confession...I felt so sorry for her last week with the broccoli and cheese ad in my Weight Watcher magazine that I gave in and made her some. Now her INR levels are down to 1.4. See what happens? GEEZ! I can't win. She does keep us entertained though! There's never a dull moment.
I spent the last two days in court. And I figured I would get picked as a juror...it's the "honest face." Lucky for me...the trial started today and ended today. It was a mistrial. I'm not sure how a person can sit and listen to 5 days worth of testimony on a double murder and not walk away a changed person. I know I couldn't have! I'm thankful I don't have to endure that! I was on the Grand Jury for a 13 year old that was murdered 10+ years ago and I still think of her. Those things are hard to erase. When you hear about all the horrific things that are going on around us - it makes you even more appreciative of your loved ones. Life is so precious. Be thankful your family. For freedom. And most importantly...BE THANKFUL FOR THE GOD WE SERVE!
We're all 3 back on our healthy eating plan. And as much as Brooke "thinks" she's starving...she's actually doing very well. Her obsession with what she can no longer have is to the point of her picking out food in magazines, bringing them to me, and telling me "MMMMMMMM" and pointing to herself. Confession...I felt so sorry for her last week with the broccoli and cheese ad in my Weight Watcher magazine that I gave in and made her some. Now her INR levels are down to 1.4. See what happens? GEEZ! I can't win. She does keep us entertained though! There's never a dull moment.
I spent the last two days in court. And I figured I would get picked as a juror...it's the "honest face." Lucky for me...the trial started today and ended today. It was a mistrial. I'm not sure how a person can sit and listen to 5 days worth of testimony on a double murder and not walk away a changed person. I know I couldn't have! I'm thankful I don't have to endure that! I was on the Grand Jury for a 13 year old that was murdered 10+ years ago and I still think of her. Those things are hard to erase. When you hear about all the horrific things that are going on around us - it makes you even more appreciative of your loved ones. Life is so precious. Be thankful your family. For freedom. And most importantly...BE THANKFUL FOR THE GOD WE SERVE!
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