My name is Kristine, I am a wife to Tom Hendricks, mother to Nik, Ashley, Tommy and Tyler. We live in Saint Louis Missouri. I started this blog after Tyler was diagnosed with Cystic Fibrosis. Not only do I hope to keep our family and friends up to date, but also for me to have a place to go with my thoughts. I have found others that understand what I'm going through, that have been there already or are facing it all as I am.
Tyler's mutations are deltaF508-621+1g>T
Creon - 1 and 1/2 capsules with every feeding CPT- twice daily 15 minutes per session
_Cystic Fibrosis *CF* is one of the most common genetic diseases, especially in Caucasian populations, & affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, and causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and deficiency of pancreatic enzyes, which keep the pancreas from breaking down and absorbing foods.
-Without treatment, Cf results in death for 95% of affected children before age 5.
-The median age for people with CF is about 36 years, but the number increases each year thanks to new medicines.
-About 1,000 new cases of CF are diagnosed each year.
-More than 95% of men with CF are sterile.
-CF occurs in aprox. one of every 3,500 live births.
-One in 400 white couples are at risk for having children with CF
-Each time two carriers conceive, there is a 25% chance that theit child will have CF, a 50% chance the child will be a carrier of the CF gene; and a 25% chance that the child will be a non carrier.
-More than 10 million Americans are unknowing, symptomless carriers of the defective gene.
-The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage.
-CF appears usually in early childhood where diagnosis is most important. Today, mother's can be tested while they are pregnant to see if their child will have CF.
-There are more than 1,000 different mutations of the CF gene.
-A sweat chloride test is the standard diagnostic test for CF. A higher amount of salt found in the sweat indicates CF.
-To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.
I have had a very hard week, and by the looks of facebook so have many others. I was actually in the middle of a full blown "why me, why Tyler" break down when I got a call that my mom was not doing well Suffering from Copd, Emphysema she has had hard days, but never that she couldn't get out of bed, or not being aware of what day it was...So Saturday I went over got her out of bed and took her to the hosp. For some reason it was hard, really hard to hold back tears. Hadn't even talked to the doc yet and I was so shook up. Never really just watched her breathe before. How did I not notice before how much she really struggles to breathe. I guess it progressed fairly slowly..kinda snuck up on me. She was the same old mom to me, just toted an oxygen tank with her every where. She never really complained, took her meds, was on oxygen couldn't work any more...But really didn't look like she was struggling until Saturday. Watching her like this has made me realize that she is not going to be around forever...She is not the invincible person I thought she was. My grandmother died from Emphysema when I was younger but I don't remember her fighting to breathe like this. maybe I was too young to really understand. I sat with my mom while they did her breathing treatments, I held the mask over her nose and mouth for her telling her to "just breathe" and when she answered with "I just can't anymore" My world crumbled..She is going to struggle for every last breath...and all I can do is hold her hand...Is this what its going to be like for Tyler? How do people stay so strong...I feel so helpless and useless...
Was wondering if anyone else out there has trouble balancing life with CF...I have 4 great kids, 3 without CF. It seems like life is getting alot harder to keep on track. My oldest will be 16 in a week or so and that's a milestone that we all should be enjoying. But its hard for me to balance out the normal kid stuff with all the extra with Tyler. Even going out to dinner as a family is a struggle for me because I'm so paranoid of Ty getting sick, I know i am probably over-reacting but i cant help it . Everyone tells me not to keep Ty in a "bubble" but it think there is a fine line between the "bubble" and taking risks with his health. I guess as time goes on I will relax a bit, for everyone else in the house's sake. I read some of the other mom's of CF kids blogs and I wonder how they have so much confidence with everyday life. Sometimes its really hard for me to handle his diagnosis. I think alot has to do with the lack of education of CF, our CF team seems a little vague ..or maybe I'm just used to knowing up front what we are dealing with and then handling it..CF is not like that ..I don't play the waiting game well....
Wow, didn't realize that its been so long since I updated. Not a whole lot new to add except Tyler has taken up the night life. He had been sleeping through the night, the last 2 weeks he has decided that sleep is over rated.. He stays awake tell 1:30 in the morning, then sleeps tell about 4 or 5 ..then little cat naps during the day...Just enough that I cant get a thing done or a wink of sleep tell his dad gets home. Not a fun routine for me. I'm hoping its just a faze. He has been having a bit more tummy troubles at night, maybe a reason. But hes not fussy just wants to play and yell!! We have a CF appointment coming up not sure what to expect they said its going to be a long day...lab work ..x rays and all..looking forward to his weigh in he is quite the little porker!
This is the first day the kids are back in school from winter break. The house is quiet again, except...Tom took vacation from work. Don't get me wrong I love him dearly, but damn I didn't realize I had such a routine. He is trying to help, the dishwasher was loaded and running when I woke up at 6am this morning!! I just have a certain order I handle the hectic mornings with the kids, it might not be the most productive way there is to get everyone up and ready, but it's "my" way and the kids are used to it. I haven't been home with Tom on weekdays in years. So it's really throwing me for a loop, I should be enjoying the company, and help with Tyler. He is off to rent a few movies right now, don't know how we are going to sit down and watch a movie together...Tyler will be up in about a 1/2 hour...Nik will be home from school by 2 and Ashley will be home by 3 and Tommy at 3:30.......It is a nice thought though..I'm thinking he has already figured out that I don't just sit on the couch and eat bon bons all day...Tyler is a full time job by himself.
2009 is over, in a way I am glad. This past year was the hardest I can remember. With the bed rest with my pregnancy..with the diagnosis of CF with Ty.. to problems with my older kids in school, My relationship with my husband, My mother being on oxygen at home..cause of copd and emphysema...2009 sucked. Wondering what is in store for me in 2010. My dad always told me "what doesn't kill ya makes you stronger" I must be one tough chick!!!! I am thankful that all the bumps in the road this year have made me realize whats really important in life. When I tell people that Ty has Cystic Fibrosis I hate the responses that I get. Its either "I'm so sorry" or " I don't know how you deal with that, I couldn't handle it..." It makes me angry. I honestly don't know what the appropriate thing to say is but don't be sorry, don't give me your condolences, I haven't suffered a loss. I don't view Ty having CF as that. I am blessed to have been given such a wonderful family, I will not let "statistics" ruin that. My family is the most important thing to me...and the thing 2009 has taught me the most is to cherish every minute ...
I just want to wish you all a very merry christmas... and say a huge thank you to all of you that have given me advice and support. The first person I met on here that I owe my sanity to is Jen and her adorable little Gavin. Reading her blog and seeing all the pictures of Gavin Livin a normal life gave me the ability to have hope for Ty. She is the first one that told me it was going to be ok that I would work through been so depressed about his diagnosis. I am so thankful to all of you for all your comments and giving me a place that I fit in with Tyler, you have all been through it so I don't feel so alone. So, a HUGE ...Thank you...and Merry Christmas
I am tylers big sister, Ashley im 13 (almost 14). At first finding out that tyler had cf wasn't that big of a deal because i really didnt undersatnd everything like what it was and what it did but when my mom explained everything i started to understand a little bit more. I really understood how serious it was one night when tyler stopped breathing. When the ambulance came and fire trucks and police it was the scariest thing thats ever happened to me EVER i was in tears. I was sleeping when everything started i woke up by the sound of my mom screaming my brothers name (nik) i ran out and my brother handed the phone to her because he had called the police she ran down stairs, nik and i followed her. She was explaining everything to the police when i saw tyler and i finally got what was going on. My mom layed tyler on the floor because the person on the phone told her to and she started c.p.r. I couldnt believe how fast the ambulance came with the fire truck and police officers they all came in and they layed tyler on the couch and hooked him up to something. I was just standing there staring i couldnt believe what was happening. Then they said my mom and tom and tyler had to go to the hospital, after they left i went to bed or at least tried. I woke up like every 20 minutes because i kept having the most horrible dreams and i couldnt stop worrying about Tyler. That was no doubt the absolute scariest night of my life. I totally and completley understand how serious cf is and how important it is to keep him well. But i dont think anyone understands more than my mom. Tyler is her first priority and she takes the smallest things that happen with tyler very seriously. She gets so excited when tyler does the smallest things like suck his thumb or try to fit both hands in his mouth which is sooo adorable, we all are living life to the fullest with tyler.