- 2 very funny little girls who keep us laughing all the time.
- A job that is CRAZY but so much fun & that I truely enjoy.
- Getting to see some old friends this weekend that I have really missed.
- AG is feeling better. (She fractured her booty & has an infection in her ear)
- Phone calls with friends who live many miles away and have to be interrupted multiple times. lol
- A husband who brings me lunch at work. (even if it is Wendy's)
9.23.2011
Thankful Thursday (on Friday)
Today I am thankful for:
9.12.2011
Girls Weekend!!
Husband took a trip recently to see a ballgame and MY family! While I was a little jealous that I couldn't go, I think I got the better end of the deal. I had four whole days of my girls by myself. I was definitely not cut out for single motherhood but a few days was actually kinda fun. We ate at all our favorite restaurants. Boots tried out some Spanish on a very nice waiter at LaBamba! Hilarious! We ate chocolate and watched movies and slept all together in my bed. AG may have had more chocolate than I would normally allow her! It was lots of fun but we are so ready for Daddy to be home. The girls and I really missed him and I was a little surprised at how much I rely on him for things around the house. He does so much of the work and I think this little trip opened my eyes to how very blessed I am to have such a wonderful and loving husband.
Hurry home daddy! We miss and love you!!
Hurry home daddy! We miss and love you!!
9.09.2011
Boots
Disclaimer:
So I am going to vent a little (maybe a lot). If that will offend you or make you want to encourage me to "count my blessings" stop reading now.
My daughter Boots is 5 years old. I have known since she was just a few weeks old that something was "going on" with her. Not developmentally but physically. She had her first ear infection at 5 weeks, always seemed to be congested, ran fevers very frequently, etc... She was a sweet cuddly baby and passed all developmental milestones early. However, she was sick all.the.time. When she was 18 months old I quit my job and kept her at home. She did do a little better but after a year I needed to go back to work. In the meantime we had taken her to Children's Hospital to see AG's pulmonologist because most of her illnesses were respiratory infections. He diagnosed her with asthma. Husband has asthma and AG has asthma so we accepted his diagnosis and began treating her for asthma. She did not seem to respond to the maintenance drugs but would get better if she was on steroids ( I HATE STEROIDS!) and/or antibiotics. In February of 2010 her Pulmonologist was not sure what was going on but he knew something was not right. He scheduled her for a broncoscopy. They are going to sedate her and go in through her mouth and look at her lungs and bronchial tubes. Husband and I waited in the little room for him to come tell us what he found. He came in and said "I still am not sure what she has but it isn't asthma." He found eight, EIGHT! different types of bacteria living in her lungs and bronchial tubes. He refered us to a Immunologist to see if we could find out why she was not fighting these things off. After a series of tests (months) it was determined she has Hypogammaglobulinemia. Basically her immune system does not function properly. She can not fight off viruses or tumors. What would be a cold to another child turns into a major respiratory infection for Boots. There are 2 different treatment options for this.
1. Monthly IV therapy - donor cells. Boots was admitted to the hospital in October of 2010 and received her 1st dose of donor cells this way. The side effects were HORRIBLE. She had a migraine, joint pain, fatigue... We quickly determined this was not the option for us.
2. Weekly infusions of donor cells. This is the method we began in November of 2010. Because she receives the cells weekly she does not have the horrible side effects and it keeps her cell count at a more consistent level.
Infusions must be done every week no matter what. They take approximately 2-2 1/2 hours to complete. We had a nurse come and teach me how to do them and now I do them by myself every week. I was so scared to stick my child in her stomach with 2 needles every week but I had to learn to deal. She has done remarkably well and has little to no side effects.
Now for the venting.
It is so hard to stick your child every week and hear her scream. It is agonizing to watch her infusion sites swell and sometimes bleed and know I did this to her. I know I am doing it FOR her but it is still hard. It sucks to have tell her "no you can't drink form the water fountain" "no you can't play in the nasty Burger King play house" "I'm sorry that you can't touch things in the dr office waiting room". I hate being looked at like a crazy lady when I wipe down the buggy at wal-mart and then argue with her about why she can't get out and walk. I have to see the world differently now and I hate that too. I hate that we gave her medicine for a condition she didn't have and that it took so long to find out some answers. I hate the "yucky" medicine she has to take for every cold, ear infection, etc... Holding her in a hospital bed and actually seeing her veins blow from the antibiotics she had to have every 6 hours for 4 days will stay with me forever. I know we are fortunate that what she has is treatable. I know I should be grateful that she is able to attend school and that she is with me but sometimes I want to forget about counting my blessings and throw a big pity party.
Thanks for allowing me to vent. I promise to post more frequently and about much happier things next time. :)
So I am going to vent a little (maybe a lot). If that will offend you or make you want to encourage me to "count my blessings" stop reading now.
My daughter Boots is 5 years old. I have known since she was just a few weeks old that something was "going on" with her. Not developmentally but physically. She had her first ear infection at 5 weeks, always seemed to be congested, ran fevers very frequently, etc... She was a sweet cuddly baby and passed all developmental milestones early. However, she was sick all.the.time. When she was 18 months old I quit my job and kept her at home. She did do a little better but after a year I needed to go back to work. In the meantime we had taken her to Children's Hospital to see AG's pulmonologist because most of her illnesses were respiratory infections. He diagnosed her with asthma. Husband has asthma and AG has asthma so we accepted his diagnosis and began treating her for asthma. She did not seem to respond to the maintenance drugs but would get better if she was on steroids ( I HATE STEROIDS!) and/or antibiotics. In February of 2010 her Pulmonologist was not sure what was going on but he knew something was not right. He scheduled her for a broncoscopy. They are going to sedate her and go in through her mouth and look at her lungs and bronchial tubes. Husband and I waited in the little room for him to come tell us what he found. He came in and said "I still am not sure what she has but it isn't asthma." He found eight, EIGHT! different types of bacteria living in her lungs and bronchial tubes. He refered us to a Immunologist to see if we could find out why she was not fighting these things off. After a series of tests (months) it was determined she has Hypogammaglobulinemia. Basically her immune system does not function properly. She can not fight off viruses or tumors. What would be a cold to another child turns into a major respiratory infection for Boots. There are 2 different treatment options for this.
1. Monthly IV therapy - donor cells. Boots was admitted to the hospital in October of 2010 and received her 1st dose of donor cells this way. The side effects were HORRIBLE. She had a migraine, joint pain, fatigue... We quickly determined this was not the option for us.
2. Weekly infusions of donor cells. This is the method we began in November of 2010. Because she receives the cells weekly she does not have the horrible side effects and it keeps her cell count at a more consistent level.
Infusions must be done every week no matter what. They take approximately 2-2 1/2 hours to complete. We had a nurse come and teach me how to do them and now I do them by myself every week. I was so scared to stick my child in her stomach with 2 needles every week but I had to learn to deal. She has done remarkably well and has little to no side effects.
Now for the venting.
It is so hard to stick your child every week and hear her scream. It is agonizing to watch her infusion sites swell and sometimes bleed and know I did this to her. I know I am doing it FOR her but it is still hard. It sucks to have tell her "no you can't drink form the water fountain" "no you can't play in the nasty Burger King play house" "I'm sorry that you can't touch things in the dr office waiting room". I hate being looked at like a crazy lady when I wipe down the buggy at wal-mart and then argue with her about why she can't get out and walk. I have to see the world differently now and I hate that too. I hate that we gave her medicine for a condition she didn't have and that it took so long to find out some answers. I hate the "yucky" medicine she has to take for every cold, ear infection, etc... Holding her in a hospital bed and actually seeing her veins blow from the antibiotics she had to have every 6 hours for 4 days will stay with me forever. I know we are fortunate that what she has is treatable. I know I should be grateful that she is able to attend school and that she is with me but sometimes I want to forget about counting my blessings and throw a big pity party.
Thanks for allowing me to vent. I promise to post more frequently and about much happier things next time. :)
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