I can't count how many times I've had to tell myself to "breathe through it".... it takes on a whole new meaning to me as the mom of a newly diagnosed "CFer". I'm new to this, all of it, and here is where I plan to track our journey and keep loved ones in the loop...
Sunday, January 30, 2011
Like Mother Like Daughter
Well I guess its true what they say, history really does repeat itself. My sister loves to tell the story of how I "dropped" her on her head.... Last night Kaitlyn was holding Gabby on my bed. Gabby has learned how to crawl backwards but not forwards, and Kate got a little too distracted by the TV. Before she knew what was happening Gabby managed to crawl backwards off the side of the bed. She bumped her head on her dresser, but luckily not hard. Scared all of us, but I think Kaitlyn worst of all. I didn't know who to worry about more, poor Gabby had a good cry for all of a minute, until she heard Kaitlyn crying, then she was fine and looking at Kaitlyn like "what's going on?" Kaitlyn on the other hand was so upset she was hyperventilating for a long time. She had just finished her breathing treatments, and I was actually worried she'd have to do another one... I called Nurse Connect just to be on the safe side, but Gabby was all giggles and smiles, and although I watched her closely, she is absolutely fine with nothing more than a tiny bump to show for it. Kaitlyn managed to calm down after a couple hours, but she gave me a good scare too. It took a lot of consoling, mostly me assuring her Gabby was okay, and telling her she was still doing a better job than I did as a big sister, because Katie managed to fall on her head not once but twice while in my care. I think what finally did it was when I told her Aunt Katie tells everyone that I "dropped" her, but I tell everyone she jumped. (Katie threw herself backwards while I was holding her on my lap and managed to keep going right out of my arms....) It's all a matter of perspective.
Thursday, January 20, 2011
It's NOT an end all...
Okay... so this has been eating at me for awhile now.... I sent out my first email for the 2011 Great Strides walk... (which is also the first ever Great Strides walk for me).The email explained that Kaitlyn was recently diagnosed and that I was participating in the Great Strides walk. I sent them about 2 weeks ago. A couple days later I received an email back from a friend that said "SORRY TO HEAR THAT BUT IT ISN'T A END ALL! ENJOY THE TIME YOU HAVE TOGETHER AND GOD TAKES CARE OF THE REST"... I am hoping this friend meant the words to be comforting or inspirational maybe, but that is not how they are effecting me. Am I imagining the insinuated "time you have LEFT together"? I haven't responded to this email, I am not sure how. Part of me wants to say, "would you say the same if it was one of your children?" "Would you have the nerve to say it to someone who has lost their loved one to CF?" Another part of me wants to say "Damn right it's not an end all! It's just the beginning."
It really is a beginning. It's a beginning of a life long fight for Kaitlyn. It's a beginning of hours spent everyday fighting to stay healthy.... A beginning of vest therapy and nebulizer treatments, of enzyme replacements, and special vitamins. It's a beginning of frequent infections and antibiotics. It's a beginning of even more frequent doctors visits, lab work and "preventative hospitalizations" (not to mention the not so preventative ones). It's the beginning of a more careful lifestyle, because God forbid she get sick. It's the beginning of us panicking every time our daughter so much as coughs. It's the beginning of our fight to save our daughter! This disease may not be quite the "death sentence" it once was, but it's still hanging there over her head for the rest of her life. I read everyday of someone who lost a son, daughter, sister, brother, mother, father, aunt, uncle, friend, or some other loved one to CF. Some of these people are in there 20's, or 30's, some in there 40's even, but there are still plenty that are still children. Try telling one of their loved ones that a CF diagnosis isn't an "end all".
This comment hurts for another reason... this doesn't come from some random stranger. This comes from a "friend". Someone I've known since high school. Someone who has known my daughter her whole life. If the roles were reversed, I can't imagine saying such a thing to him. I have been trying my best to stay positive through all of this. Especially right now as I wait (impatiently of course) for Gabby's test results to see if she too has CF. This fight is hard enough for one, but I am not sure how we'd handle it if both of our girls have this. (Luckily Josh is safe, since he isn't my biological child and it is not likely Chrissy is also a carrier.... he has had no symptoms, so they just say he'll need to be tested later in life to see if he's a carrier.... because he could potentially have a child with CF if he is. Hopefully he isn't and it will never be an issue, but he is aware that in the future it will need to be done.)
I've tried figuring out why this is bothering me so much.... is it really just the words he used, or is it maybe a little bit of me just being mad at the situation? Maybe it's a little of both.... I admit I am still trying to come to terms with all this. It's still very fresh and raw. I have good days and bad. I have angry moments and sad moments, (but I have a lot more happy ones).... for now I guess I just have to breathe through it.
It really is a beginning. It's a beginning of a life long fight for Kaitlyn. It's a beginning of hours spent everyday fighting to stay healthy.... A beginning of vest therapy and nebulizer treatments, of enzyme replacements, and special vitamins. It's a beginning of frequent infections and antibiotics. It's a beginning of even more frequent doctors visits, lab work and "preventative hospitalizations" (not to mention the not so preventative ones). It's the beginning of a more careful lifestyle, because God forbid she get sick. It's the beginning of us panicking every time our daughter so much as coughs. It's the beginning of our fight to save our daughter! This disease may not be quite the "death sentence" it once was, but it's still hanging there over her head for the rest of her life. I read everyday of someone who lost a son, daughter, sister, brother, mother, father, aunt, uncle, friend, or some other loved one to CF. Some of these people are in there 20's, or 30's, some in there 40's even, but there are still plenty that are still children. Try telling one of their loved ones that a CF diagnosis isn't an "end all".
This comment hurts for another reason... this doesn't come from some random stranger. This comes from a "friend". Someone I've known since high school. Someone who has known my daughter her whole life. If the roles were reversed, I can't imagine saying such a thing to him. I have been trying my best to stay positive through all of this. Especially right now as I wait (impatiently of course) for Gabby's test results to see if she too has CF. This fight is hard enough for one, but I am not sure how we'd handle it if both of our girls have this. (Luckily Josh is safe, since he isn't my biological child and it is not likely Chrissy is also a carrier.... he has had no symptoms, so they just say he'll need to be tested later in life to see if he's a carrier.... because he could potentially have a child with CF if he is. Hopefully he isn't and it will never be an issue, but he is aware that in the future it will need to be done.)
I've tried figuring out why this is bothering me so much.... is it really just the words he used, or is it maybe a little bit of me just being mad at the situation? Maybe it's a little of both.... I admit I am still trying to come to terms with all this. It's still very fresh and raw. I have good days and bad. I have angry moments and sad moments, (but I have a lot more happy ones).... for now I guess I just have to breathe through it.
Sunday, January 9, 2011
Jewelry!!!
So excited!!!!! Mandy just asked me to do the jewelry for her cousin April's wedding!!! I just started getting into making jewelry, and I must say I love doing it! It is a nice relaxing way for me to spend some time, and I feel productive... I have been playing with the idea of doing some for CF Awareness, and selling them and donating most of the proceeds to the Cystic Fibrosis Foundation. I have gotten a lot of good feedback about jewelry I've already made, I am just hesitating because I am kinda new to this as well. I am still learning how different metals wear etc.... I would hate to make and sell some to find out later I should have used a different material to last longer.... for now, I LOVE LOVE LOVE experimenting with different materials, ideas, etc... I am SOOO excited and honored that Mandy thought enough of my jewelry to ask me!!!!!
Saturday, January 8, 2011
2010 Our Journey to Diagnosis
2010 was a mix of highs and lows.... of course the first high and low were actually a part of 2009... finding out that I was pregnant around 2am on December 5, 2009. It was a surprise blessing (our youngest had just turned 10, our oldest was 15 and I had just started back to work at the hospital that Monday). On December 7th I started spotting. On December 9th I saw the doctor for the first time. They sent me for the first blood work panel. On December 10th they had me do an ultrasound to rule out miscarriage. They couldn't see anything, but dated my pregnancy at 5 weeks and scheduled another ultrasound for 2 weeks later. On December 14th or 15th the doctors office called me. The blood tests had come back and I tested positive as a carrier for cystic fibrosis. I was at work when I got that call.... I didn't waste any time, I got online and started researching cystic fibrosis. I had heard the words before, just didn't know what it was... I was picturing cerebral palsy or something.... The more I researched the more scared I got. Not just for the child I was carrying either... A LOT of the symptoms fit Kaitlyn. So many in fact that I called Kaitlyn's pediatrician. The nurses said they would talk to the doctor about my concerns and call me back. I got impatient, I called them back first. I was told it's "highly unlikely" that Kaitlyn has cystic fibrosis. She would have been diagnosed much earlier than this. Don't over worry it, but if it will make you feel better you can pay for the blood test to rule it out. (Without insurance they wanted me to pay over $600.00, not something I could afford....so I let it go. I didn't have Steve tested either, not just because we couldn't afford to, but because it wouldn't matter either way, they would test the baby once born. The numbers kinda reassured me... "1 in 25 persons of European descent is a carrier for CF" then IF both parents are carriers, there is "ONLY a 1 in 4 chance the baby will have CF" but I am by nature a worrier, and by no means did I let if fade to the background of my mind... I started paying more attention to Kaitlyn's symptoms.
The rest of December was mostly spent worrying and getting blood tests and ultrasounds to make sure I wasn't having another miscarriage. By the end of December I was sick... hyperemesis gravidarium (again)... just a long technical term for excessive sickness. I was hospitalized and given multiple meds for it in January and February. It never went away.
On June 30, 2010 I was put on bed rest due to pregnancy complications.... not that my pregnancy hadn't been complicated before that.... pregnancy is NOT good to me. Just a couple weeks later I was having more signs of preterm labor, so they gave me the steroid injections to speed up the baby's lung development. Thank GOD for that, because they gave me one injection Monday, another Tuesday and I am almost positive my water broke early Thursday morning. Although the doctor's office said my water had not yet broken, I was dilated a little and they told me to watch for contractions. They warned that I would have cramping due to being checked out, but if real contractions started I had to let them know and go right to the hospital .... of course labor started that night. I kept telling myself it was braxton hicks or whatever but by early morning I knew different. I got in the shower around 8:45am to see if contractions would slow even a little... they didn't. I had 3 in 15 minutes... it was barely 9am and the office had just opened. They told me to come in and get checked there instead of going to the hospital. I did and lo and behold my water HAD broken & I was in labor. They told me to go to the hospital and they would do the c-section around 5:30 that evening. So I drove myself back home to pack (not easy with contractions let me tell you) and called Steve and told him to meet me at the house. We packed up and went to the hospital close to noon, they made me labor med-free (also not easy with a pain tolerance as low as mine) until it was time for the c-section. Gabriella Paige was born at 5:38pm on July 16, 2010. Although one month premature she did not have to go to NICU at all(despite worries and threats that she would spend up to 2 weeks there) she was a healthy baby girl!
Of course now that I was out of work, they approved Kaitlyn for medicaid. Gabriella had to see the doctor quite a few times her first couple weeks of life due to being premature and having jaundice, etc. (She was put on a "biliblanket" for it eventually which is how she became "our little glow worm".) Anyway, I hadn't forgotten that whole carrier for CF thing, so after monitoring Kaitlyn's symptoms for 8 months I was pretty sure she needed to be seen by a doctor and as soon as possible.
August 2010 AKA WORST month of my life thus far.....I took Kaitlyn to the pediatrician on August 2, 2010 (the very 1st day her insurance became effective). Her pediatrician agreed with me it was time for her to see the GI doctor again. She did Kaitlyn's physical but assured me her lungs sounded "clear" and it didn't look like her chronic cough came from an infection.
I called and made an appointment ASAP. Her GI doctor got her in August 17th, 2010. That's a day I won't soon forget. It was the start of some all time LOW's. Dr. R. listened to me, he had been the one to diagnose her with acid reflux and IBS at age 4. He was surprised no meds were helping... then I explained some of her symptoms and he stopped me. He asked me "Have I tested Kaitlyn for cystic fibrosis already?" as he looked through her previous records. I started to tear up, "No, but when I was pregnant they told me I was a carrier" I told him. I think I kinda knew then I was right... I didn't want to be, but there was finally a diagnosis that fit Kaitlyn's symptoms. He wrote the script to have her tested as well as scheduling some more tests... (Also at this time my father had a bone marrow biopsy done to test for cancer) It was a long 2 weeks, waiting for phone calls for diagnosis on Kaitlyn and my father....Long story short Kaitlyn's first test was "borderline" but it was not done at an "accredited testing facility" and was deemed a "screening". The second test came back positive, but they required a second positive for diagnosis. Dr. R. scheduled another test for August 31, 2010 but also gave us an appointment with the Pulmonologist for September 1st. (Somewhere around this time my father got his results too... they weren't good. He was diagnosed with MDS which basically meant leukemia. More about that later)
They didn't bother calling me with the results of the last test.... we went to see the Pulmonologist who runs a "CF Clinic" on certain days. Turns out that's why they scheduled us that day... Kate saw a respiratory therapist first, and then saw the Doctor. When the doctor walked in I knew it wasn't good news... by then I wasn't really expecting it would be. I wasn't expecting however that the news would be quite as bad as it was... the Dr. said "She does have CF" and as I started tearing up, he went on to say he wasn't even going to finish her appointment. (She would have still gone on to see a Dietitian, a Social Worker, the Respiratory Therapist, etc.) I am pretty sure he explained some things, but I don't remember a lot of that conversation, I am pretty sure I was in some state of shock. The doctor said Kaitlyn's PFT's (Pulmonary Function Test) were so bad they were going to hospitalize her on the spot for the next 2 weeks. He left the room to preadmit her and although I know the social worker came in with some CF books, I really don't remember much else.
As shocked as I was about the hospitalization, I think Steve may have been even more shocked... he was kind of in denial about the whole thing and really kept expecting any of the doctors to just say "No she doesn't have CF". I called and told him about it as we left the doctor's office and headed straight to the hospital. We got Kaitlyn settled in and I left to drive the hour back home so I could get clothes for the three of us (the hospital not only let me stay with Kaitlyn, but also provided an isolette for Gabriella) and to drop of my Mom who had made the trip down with us. (I really thank GOD for my Mom as she is a major source of strength and support for me. And THANK GOD she was there with me for that, because she really helped me keep it together.)
The ride back to the hospital was interesting... Gabby screamed and cried the entire way... ALL 60+ minutes.... I tried to comfort her the best I could from the drivers seat, but really I wanted to scream and cry with her because our lives had just been forever changed. By the time I got back to the hospital around 11p.m. Kaitlyn had already wound the nurses around her finger.... All in all Kate took the hospitalization pretty well... I think she was all too happy to miss school, and getting the coolest room there as well as having nurses wait on her hand and foot and getting to eat ALL the high calorie (read JUNK) food she wanted at ALL times of the day and night was just a "treat" in her eyes. It made the breathing treatments, vest therapy, PIC line, IVs and countless pills more tolerable for her. In fact the only time she cried the entire time we were there was when she was getting the PIC line put in, and she only cried for a minute because it was the only time she was scared....(of the needle) She handled everything with a smile on her face... breathing treatments, vest and manual therapy, multiple needle sticks for blood tests, etc... and even though I was putting on a "brave front" for her, seeing her the way she handled all this made her another source for my own strength. It did eventually get old for her and I think it finally started to sink in that this was a FOREVER thing, but not until after we left the hospital.
Since September Kaitlyn has had at least 1 doctors appointment (sometimes as many as 3 in any given week) every 2-3 weeks. Her pulmonologist has added the diagnosis of asthma to her CF, and her GI doctor kept the diagnosis of acid reflux due to the other tests he did on Kate, and due to the damage he saw in her stomach and esophagus. She has gotten into the routine of pills, breathing treatments, vest therapy, inhalers, etc. Her big brother Josh has been a great help in this because a lot of the time he will play video games with her while she does them...
Speaking of her GI doctor, I could never thank him enough.... CF is not a diagnosis you want, but after watching Kaitlyn suffer with the GI issues for over 10 years with no relief it was great to know we HAD a diagnosis and there WERE treatments that would actually help. I tried to put a heartfelt thank you into words in the Christmas card I wrote for him. On December 22nd when we took Kaitlyn to see the pulmonologist (who also got a heartfelt thank you with his Christmas card because he is just an awesome and amazing Doctor too) I had planned to stop by and give her GI doctor his card too as their offices are only about 2 minutes apart.... unfortunately her pulmonologist informed me that her GI doctor had passed away just a couple days earlier unexpectedly... Now I never will get to give him that heart felt thank you, GOD BLESS that man, he had such an impact on our lives.... and if it weren't for him Kaitlyn probably still wouldn't have a diagnosis...
I should probably also say that Gabby had a negative newborn screening! Kaitlyn's pulmonologist wanted to do a sweat test just in case though. Her first one she didn't sweat enough, the second one they weren't sure if she did sweat enough, but they managed to get a result of 10 which is NEGATIVE! Unfortunately she has a lot of the same symptoms Kaitlyn had as an infant and the pulmonologist said we may have to repeat the sweat test or do some genetic testing to be sure. Gabby sees their new GI doctor pretty soon, her pediatrician believes he will order the genetic testing as she has had more GI issues that could or could not be symptoms of CF..... if not the pediatrician said she would order it. The waiting is always the worst for me... anyone who knows me can tell you patience IS a virtue, just not one I possess....
As for my father, it took a lot of persuading (my sister and mom had not really given him too much of a choice nor would I have had I been at that appointment with them), but he finally consented to chemotherapy. He had his first round in October. Thankfully he has been tolerating it fairly well, although he has required a lot of blood transfusions. He is the strongest man I have ever known and he is a fighter! HE WILL BEAT THIS!
2010 was a journey into a new way of life for my family, it changed life as we knew it, some ways good some ways awful, but I do THANK GOD for all the blessings in my life! I know it could always be worse, and all this has given me a new purpose in life too... not just to fight to help fund research and find a CURE, but also to educate, educate, educate.... I can't believe Kaitlyn had to suffer soooo much for soooo long soooo unnecessarily when a simple blood test could have given answers from the beginning. (as a side note: while we were in the hospital in September I had to make a phone call to my insurance agent...while describing what was going on with Kaitlyn, she asked me what her symptoms had been, as I told her she said her grandson who had just moved down here from out of state with his mom had a lot of those same symptoms and doctors couldn't figure out what was going on with him. She did know he had not yet been tested for CF nor had it been mentioned as a possibility. She too had heard the words cystic fibrosis before but didn't really know what it was. She told me she was going to talk to her daughter about having him checked for CF as well.... how many others are out there undiagnosed because their symptoms aren't severe enough at birth and there wasn't standardized screening when they were born??? That conversation is what cemented my decision to educate people about CF whenever the opportunity presents itself.) Okay... back on track, I've been on a STEEP learning curve this year and it's been pretty overwhelming at times... I've never "blogged" before, but when I was younger I was told to journal and it helped me vent....hopefully this will help me cope, because this has been and promises to continue to be an emotional ride. God Bless us all in 2011!
The rest of December was mostly spent worrying and getting blood tests and ultrasounds to make sure I wasn't having another miscarriage. By the end of December I was sick... hyperemesis gravidarium (again)... just a long technical term for excessive sickness. I was hospitalized and given multiple meds for it in January and February. It never went away.
On June 30, 2010 I was put on bed rest due to pregnancy complications.... not that my pregnancy hadn't been complicated before that.... pregnancy is NOT good to me. Just a couple weeks later I was having more signs of preterm labor, so they gave me the steroid injections to speed up the baby's lung development. Thank GOD for that, because they gave me one injection Monday, another Tuesday and I am almost positive my water broke early Thursday morning. Although the doctor's office said my water had not yet broken, I was dilated a little and they told me to watch for contractions. They warned that I would have cramping due to being checked out, but if real contractions started I had to let them know and go right to the hospital .... of course labor started that night. I kept telling myself it was braxton hicks or whatever but by early morning I knew different. I got in the shower around 8:45am to see if contractions would slow even a little... they didn't. I had 3 in 15 minutes... it was barely 9am and the office had just opened. They told me to come in and get checked there instead of going to the hospital. I did and lo and behold my water HAD broken & I was in labor. They told me to go to the hospital and they would do the c-section around 5:30 that evening. So I drove myself back home to pack (not easy with contractions let me tell you) and called Steve and told him to meet me at the house. We packed up and went to the hospital close to noon, they made me labor med-free (also not easy with a pain tolerance as low as mine) until it was time for the c-section. Gabriella Paige was born at 5:38pm on July 16, 2010. Although one month premature she did not have to go to NICU at all(despite worries and threats that she would spend up to 2 weeks there) she was a healthy baby girl!
Of course now that I was out of work, they approved Kaitlyn for medicaid. Gabriella had to see the doctor quite a few times her first couple weeks of life due to being premature and having jaundice, etc. (She was put on a "biliblanket" for it eventually which is how she became "our little glow worm".) Anyway, I hadn't forgotten that whole carrier for CF thing, so after monitoring Kaitlyn's symptoms for 8 months I was pretty sure she needed to be seen by a doctor and as soon as possible.
August 2010 AKA WORST month of my life thus far.....I took Kaitlyn to the pediatrician on August 2, 2010 (the very 1st day her insurance became effective). Her pediatrician agreed with me it was time for her to see the GI doctor again. She did Kaitlyn's physical but assured me her lungs sounded "clear" and it didn't look like her chronic cough came from an infection.
I called and made an appointment ASAP. Her GI doctor got her in August 17th, 2010. That's a day I won't soon forget. It was the start of some all time LOW's. Dr. R. listened to me, he had been the one to diagnose her with acid reflux and IBS at age 4. He was surprised no meds were helping... then I explained some of her symptoms and he stopped me. He asked me "Have I tested Kaitlyn for cystic fibrosis already?" as he looked through her previous records. I started to tear up, "No, but when I was pregnant they told me I was a carrier" I told him. I think I kinda knew then I was right... I didn't want to be, but there was finally a diagnosis that fit Kaitlyn's symptoms. He wrote the script to have her tested as well as scheduling some more tests... (Also at this time my father had a bone marrow biopsy done to test for cancer) It was a long 2 weeks, waiting for phone calls for diagnosis on Kaitlyn and my father....Long story short Kaitlyn's first test was "borderline" but it was not done at an "accredited testing facility" and was deemed a "screening". The second test came back positive, but they required a second positive for diagnosis. Dr. R. scheduled another test for August 31, 2010 but also gave us an appointment with the Pulmonologist for September 1st. (Somewhere around this time my father got his results too... they weren't good. He was diagnosed with MDS which basically meant leukemia. More about that later)
They didn't bother calling me with the results of the last test.... we went to see the Pulmonologist who runs a "CF Clinic" on certain days. Turns out that's why they scheduled us that day... Kate saw a respiratory therapist first, and then saw the Doctor. When the doctor walked in I knew it wasn't good news... by then I wasn't really expecting it would be. I wasn't expecting however that the news would be quite as bad as it was... the Dr. said "She does have CF" and as I started tearing up, he went on to say he wasn't even going to finish her appointment. (She would have still gone on to see a Dietitian, a Social Worker, the Respiratory Therapist, etc.) I am pretty sure he explained some things, but I don't remember a lot of that conversation, I am pretty sure I was in some state of shock. The doctor said Kaitlyn's PFT's (Pulmonary Function Test) were so bad they were going to hospitalize her on the spot for the next 2 weeks. He left the room to preadmit her and although I know the social worker came in with some CF books, I really don't remember much else.
As shocked as I was about the hospitalization, I think Steve may have been even more shocked... he was kind of in denial about the whole thing and really kept expecting any of the doctors to just say "No she doesn't have CF". I called and told him about it as we left the doctor's office and headed straight to the hospital. We got Kaitlyn settled in and I left to drive the hour back home so I could get clothes for the three of us (the hospital not only let me stay with Kaitlyn, but also provided an isolette for Gabriella) and to drop of my Mom who had made the trip down with us. (I really thank GOD for my Mom as she is a major source of strength and support for me. And THANK GOD she was there with me for that, because she really helped me keep it together.)
The ride back to the hospital was interesting... Gabby screamed and cried the entire way... ALL 60+ minutes.... I tried to comfort her the best I could from the drivers seat, but really I wanted to scream and cry with her because our lives had just been forever changed. By the time I got back to the hospital around 11p.m. Kaitlyn had already wound the nurses around her finger.... All in all Kate took the hospitalization pretty well... I think she was all too happy to miss school, and getting the coolest room there as well as having nurses wait on her hand and foot and getting to eat ALL the high calorie (read JUNK) food she wanted at ALL times of the day and night was just a "treat" in her eyes. It made the breathing treatments, vest therapy, PIC line, IVs and countless pills more tolerable for her. In fact the only time she cried the entire time we were there was when she was getting the PIC line put in, and she only cried for a minute because it was the only time she was scared....(of the needle) She handled everything with a smile on her face... breathing treatments, vest and manual therapy, multiple needle sticks for blood tests, etc... and even though I was putting on a "brave front" for her, seeing her the way she handled all this made her another source for my own strength. It did eventually get old for her and I think it finally started to sink in that this was a FOREVER thing, but not until after we left the hospital.
Since September Kaitlyn has had at least 1 doctors appointment (sometimes as many as 3 in any given week) every 2-3 weeks. Her pulmonologist has added the diagnosis of asthma to her CF, and her GI doctor kept the diagnosis of acid reflux due to the other tests he did on Kate, and due to the damage he saw in her stomach and esophagus. She has gotten into the routine of pills, breathing treatments, vest therapy, inhalers, etc. Her big brother Josh has been a great help in this because a lot of the time he will play video games with her while she does them...
Speaking of her GI doctor, I could never thank him enough.... CF is not a diagnosis you want, but after watching Kaitlyn suffer with the GI issues for over 10 years with no relief it was great to know we HAD a diagnosis and there WERE treatments that would actually help. I tried to put a heartfelt thank you into words in the Christmas card I wrote for him. On December 22nd when we took Kaitlyn to see the pulmonologist (who also got a heartfelt thank you with his Christmas card because he is just an awesome and amazing Doctor too) I had planned to stop by and give her GI doctor his card too as their offices are only about 2 minutes apart.... unfortunately her pulmonologist informed me that her GI doctor had passed away just a couple days earlier unexpectedly... Now I never will get to give him that heart felt thank you, GOD BLESS that man, he had such an impact on our lives.... and if it weren't for him Kaitlyn probably still wouldn't have a diagnosis...
I should probably also say that Gabby had a negative newborn screening! Kaitlyn's pulmonologist wanted to do a sweat test just in case though. Her first one she didn't sweat enough, the second one they weren't sure if she did sweat enough, but they managed to get a result of 10 which is NEGATIVE! Unfortunately she has a lot of the same symptoms Kaitlyn had as an infant and the pulmonologist said we may have to repeat the sweat test or do some genetic testing to be sure. Gabby sees their new GI doctor pretty soon, her pediatrician believes he will order the genetic testing as she has had more GI issues that could or could not be symptoms of CF..... if not the pediatrician said she would order it. The waiting is always the worst for me... anyone who knows me can tell you patience IS a virtue, just not one I possess....
As for my father, it took a lot of persuading (my sister and mom had not really given him too much of a choice nor would I have had I been at that appointment with them), but he finally consented to chemotherapy. He had his first round in October. Thankfully he has been tolerating it fairly well, although he has required a lot of blood transfusions. He is the strongest man I have ever known and he is a fighter! HE WILL BEAT THIS!
2010 was a journey into a new way of life for my family, it changed life as we knew it, some ways good some ways awful, but I do THANK GOD for all the blessings in my life! I know it could always be worse, and all this has given me a new purpose in life too... not just to fight to help fund research and find a CURE, but also to educate, educate, educate.... I can't believe Kaitlyn had to suffer soooo much for soooo long soooo unnecessarily when a simple blood test could have given answers from the beginning. (as a side note: while we were in the hospital in September I had to make a phone call to my insurance agent...while describing what was going on with Kaitlyn, she asked me what her symptoms had been, as I told her she said her grandson who had just moved down here from out of state with his mom had a lot of those same symptoms and doctors couldn't figure out what was going on with him. She did know he had not yet been tested for CF nor had it been mentioned as a possibility. She too had heard the words cystic fibrosis before but didn't really know what it was. She told me she was going to talk to her daughter about having him checked for CF as well.... how many others are out there undiagnosed because their symptoms aren't severe enough at birth and there wasn't standardized screening when they were born??? That conversation is what cemented my decision to educate people about CF whenever the opportunity presents itself.) Okay... back on track, I've been on a STEEP learning curve this year and it's been pretty overwhelming at times... I've never "blogged" before, but when I was younger I was told to journal and it helped me vent....hopefully this will help me cope, because this has been and promises to continue to be an emotional ride. God Bless us all in 2011!
Subscribe to:
Comments (Atom)