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 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.
Well last night was Tyler's first visit to the family. Other than my parents and Tom's parents we really havent introduced him to everyone. We celebrated x-mas with my moms side of the family many people in a little house. It wasn't as bad as I thought it was going to be I had to answer alot of questions, which I was expecting. Our cf team had told us to limit big gatherings with him, and Tom didn't even want me to take him. I don't want to miss out on the family functions, most of the people there I see once a year, at x-mas, I wont deny Tyler of that. Of course I did take the hand sanitizer and was a little over-protective. But it was a great night. !!
I have become so paranoid to be around sick people. Things that I never noticed before. I went to my daughter's choir performance the other night, Just my son Nik and myself went. I left Tyler home with dad. We had this family sit behind us mom, dad, about 3 kids... hacking and coughing and sneezing. I sat with my sleeve over my nose and mouth trying to avoid breathing their germs for a half hour. I am wondering why did they come, if i was that sick I would not go sit in a crowded room and expose everyone to my cold. Tyler has made me see alot of things I never noticed before, maybe its just me being paranoid to bring something home to Tyler but geez.......if your sick stay home I dont feel like sharing your germs.
Its amazing to me the little things I am able to enjoy with Tyler that I missed with my other kids. I am now for the first time ever a stay at home mom. It makes me sad to realize that because I was working all the time I missed so much. I never thought I would be so excited to see my son suck his thumb for the first time, or discover that his toes are conected to him and he controls them...fasinating stuff. Little things I guess I took for granted before. It bothers me to think that Nik, Ashley, and Tommy also missed out on me being around all the time. When they were babies my main priority was to provide for them and that ment I worked alot of hours, and they spent alot of time with grandma and grandpa. I just hope that they all know they are so loved, my kids are my world.
I have denied, gotten very angry, cried ALOT..... Finally accepted that this is real and I can't fix it. Now what.... ? I just go on, Tyler is a perfectly normal 3 and 1/2 month old baby. The enzymes, the salt in his bottles, the airway clearances....etc. Its all normal to me now. I do get very nervous taking him for his cf appointments. But I think that's because I still have so many questions. Usually the doc's response is"we have to wait and see", I'm trying to get used to that too. The unknown is the hardest part.
This is the beginning of the first ever blog for the Hendricks Family...Bear with me I am new to this! I'm hoping to share with all of our family and friends Tyler's footsteps through life with Cystic Fibrosis and how it affects us all as a family.
In August of 2009 I was blessed with my fourth child. Having a 15, 13 and 8 year old at home I thought number 4 would be a breeze. First revelation...don't ever assume anything is going to be easy just because you have done it before! Three previous pregnancy's no problems but with the fourth by 13 weeks I was on bed rest. I struggled through the rest of my pregnancy not knowing day by day if we would make it the whole nine months. Bed rest and meds I did make it. I was induced on August 26 2009, a few weeks early. The longest most painful labor and delivery of any of my kids. Tyler was officially here and he was perfect. All of my fears of something just not being "right" for the last nine months vanished, after I counted all his fingers and toes of course. I held a perfect little newborn. We went home and for the first week everything was perfect, normal, newborn baby stuff. No sleep, stumbling around in the middle of the night making bottles. It wasn't until his first week check up I had any reason to think anything was different with him. I don't remember much of that day really, everything was fine, and then the doc said "We had an abnormal result come back on Tyler's newborn screening...I want you to repeat the test today... its possible he has Cystic Fibrosis.." Then all I heard was blah blah blah....my head was spinning, I got sick to my stomach even though I had never even heard of cystic fibrosis, I knew in my gut it was bad...We did the repeat newborn screening but had to wait a week for the results. I came home and googled Cystic Fibrosis....and then I held Tyler and cried...and cried. 10 days later with the results of the 2nd newborn screening and a sweat test Tyler was diagnosed with CF. Our lives are forever changed by his diagnosis, but thankfully with all the information and support I have received from my new found Internet family I can finally look into Tyler's baby blues without bursting into tears...