GETTING TO KNOW EVERYONE

[Seana30]

I guess I will tell ya'll a little about myself and my family.....and would love to hear from everyone else.

I am 32 years old, married, and have 3 children. I am an EMT and work for a private ambulance company in my hometown of El Paso, TX.

Lauren is my oldest, 14, and just started high school 2 days ago. She is a cheerleader and has played violin for 5 years. She does not have CF.

Courtney is next and she is 12. She just started 7th grade. Courtney is my shy, quiet one, but she LOVES fashion, hair, that type of stuff. Courtney has CF.

Cameron is my youngest and he is 10. He just started 5th grade. He LOVES computers and vidoe games, and would stay on them 24/7 if we allowed him to. Cameron does not have CF.

My hubbys name is Doug, JD, James......matter on who is talking to him........lol. His family owns an escrow business here in town and that keeps him VERY busy.

My two daughters are from my first marriage, and their daddy is in the Marine Corps. We have been very lucky in that aspect since Courtney receives all of her medical care and medication free. I could not imagine what it would be like to have the added stress of medical expenses on top of everything else!!

Courtney was diagnosed in April 2003 at the age of 10. She is doing well now, and has put on 26 pounds since diagnoses.

I would LOVE to get to know all of you, and have a support system here since we do not have a local CF Chapter in our town.

I hope to hear from ya'll soon.

Seana

 

[arabeth]

Hi Seana,

I'm Renee. I have 5 children, 3 boys (no CF), Kyle 12, Jacob 7 and Andrew 6, and 2 girls (both with CF) Kaitlyn 10 and Kacie 6. Kaitlyn was a very sick baby, going undiagnosed until age 2 1/2. She was hospitalized multiple times with uncontrollable wheezing, pheumonia, etc... She had a very rough start in life and had the unfortunate problem of living in a very, very small town where we had to drive long distances to any dr and none of them were familiar with CF. By the time she was 2 1/2 I had spent so much time reading medical books that I finally diagnosed her myself and took her to the dr and insisted on a sweat test. The dr resisted and told me I was just being paranoid but I demanded the test and sure enough, it was positive. The test at the time was an old test, not even recognized by the CF Center, but again, it was at a tiny hospital in the middle of nowhere. That test gave immediate results, not like today where it takes like 3 hours. It was something like a guitar tuner and I watched the needle rise as the test was being done. They had told me that 0 - 50 was normal, 50 - 70 was borderline and anything over 70 was positive. 150 was the highest number. Kaitlyn's went to 147. I darn near passed out. The dr had convinced me that I was wrong so I was totally caught off guard. I had never heard of CF other than reading those medical books so it was a complete shock to me. The tech who did the test had never seen a positive one and she started crying because she didn't know what to say to me. All the nurses and staff were standing around looking at us and were stunned. They rarely did the test and certainly had never done a positive one. Needless to say, their attitudes didn't help me much at the time. It made things worse for me that even the medical professionals were upset. It wasn't until I went to the CF Center (Dr. John Rogers in Knoxville, TN-a man I will forever cherish) that our lives changed. Kaitlyn's health improved dramatically. She was hospitalized once more (her 3rd birthday) for a 5 day mini tuneup and has never been back in the hospital. She's now almost 11. Thanks to her, my other daughter, Kacie, has never had a lung infection. We knew during my pregnancy that she had CF so she was properly cared for and things have been totally different for her. She is suffering from some severe sinus problems at the moment and will likely have surgery next month. She has a 3rd appt with the ENT tomorrow and will probably schedule the surgery. We recently moved to McAllen, TX and that move, I believe, has not been positive where the girls health is concerned. Kacie had never had sinus problems before. We had been in Minnesota for the past 4 years. I now know that this is a huge allergy area and I am really suffering from guilt because of Kacie's problems. We have been here since January and will finish the year out here but will likely be moving back up north after that.

So, that's my story in a nutshell. Glad to meet you. I see you are also in TX. I'd say we were amost neighbors except that TX is so darn big I can drive for 12 hours and still be in TX... It's funny... I went to visit my father in KY last month and it's 1600 miles...the halfway point was Texarkana, TX... It took me 12 1/2 hours just to get out of the state of TX and then another 12 1/2 to go through Arkansas, Tennessee and Kentucky... Crazy. TX is a country within a country!

Anyway, Nice to meet you!!!

 

[Haileysmommy]

Hello. I am Leeann. I have 3 beautiful girls and a wonderful hubby Abe. My girls are Brooke(6 no cf), Aaliyah(3 no cf), and Hailey(6 mo with cf). We live in Colorado. I am a stay at home mom. Day care is not worth it. If I went back to work more than 70% of my check would go to daycare. I plan on going back maybe when my 3 year old starts school. That way I only have daycare for 1. I am working fir myself for a company called Arbonne. They are a botanically based body care company. This month I made $350 which isin't much but it is better than nothing. My hubby is a diesel mechanic. He makes good money and they give him a company truck so that is a plus. Brooke will start 1st grade here in a few weeks. Aaliyah is our wild one. Hailey was diagnosed at 19 days thanks to the newborn screen here. They told us at her 2 week check up that it was a possibility and we went the following Tues for a sweat test. That was the longest day of our lives. We drove 2 hours to the clinic they did the test and gave the results to Childrens Hosp. Everyone that saw her said "The test will be negative she is too healthy to have cf". They were all wrong. We were at the cf clinic for 4 hours going over stuff. Then we had a 2 hour drive home. Plus it was February and is was nasty and snowy that day. Hailey has been doing great. She has been sick for the past week though so I am hoping she gets better soon. I am also hoping to get her onto a medicaid program. They have one here in CO that is based upon the medical dissability and not the parent's income. That would help out so much. I think this year alone we have payed over $5000 and it is only half over. The medicaid would cover what our insurance dosen't. It will be nice to get to know you all.

 

[jenniferp]

Hi Seana,
My name is Jen and my husband is Jeff. I'm a Deputy Sheriff and he is active duty USMC, and like you said, thank goodness for the health insurance!
We have 3 children and one on the way.
The oldest is my son Zachary, he is 12 and he is from my first marriage. He does not have CF.
Second is Cameron, he is 11 and from my husband's first marriage. He has CF.
Third is our baby Allyson, she is 3 (totally runs the house), she is our child together and she does not have CF, she is a known carrier.
And last but certainely not least is Andrew (AJ) who is expected on September 5th, and he has already been diagnosed with CF via amnio.
My pregnancy is being monitored due to the appearance of an echogenic bowel in the second trimester, and then a third trimester u/s showed the baby's bowel is dilated 1 cm at this time, indicating there is some blockage. I'm hoping he is born and able to pass this without surgery. Basically, my whole life is focused around his arrival right now, and hoping all goes well. I thought pregnancy was difficult the last two times, little did I know how much more difficult it is when you know your child will be sick, it adds a lot of fear to an expectant mother who already fears everything.
Jen

 

[melleemac]

Hi Seana
Welcome to this support group. Im from Canada, married with three kids. My eldest nearly 14 with out cf and identicle twin 11 year old boys with cf. They were diagnosed at three months and have always has a really tough time. Basically everything they do is a mile stone for us. All three of my boys are my pride and joy! I hope you find support and encouragment on this board,as Im sure we have all needed it from one time or another .
Mel

 

[JRsmom]

Hi everyone I am also new to this forum but here goes
My name is Becca I own my own business. My husband Larry is a truck driver. I have a 20 year old daughter Melissa no/cf she is a charmer. My sons name is Justin or JR for what his friends call him. He is 16. He is an active young man who loves cars( exspecially his own). He loves to hang out with his friends and try not to get into trouble. We live in Illinois. My Childrens father was killed almost 6 years ago in a car accident at the age of 37. He was very much loved by us all. Justin goes in the hospital about 3 times a year. His health is good but he has that flair up now and then. He has had trouble with his weight but now in the teens he seems to be be doing better with that. He is on ten differant meds a day and does three CPTs a day. His biggest complaint about the CPTS is it gets in the way of his working on cars with his best friend. When Justin turned 16 I told the Doctors to go to him for anything about his health. I will be there for him but He wants to start making the choices about his health himself not that he doesn't talk to me about it, in the end it is him who makes the finnall say. Justin was diagnosed w/CF July 9th 1991 He has a lot of problems with molds , asthma and CFRD not to mention viruses. On Monday we go to see the CF doctors. they have talked about putting him in for a tune up before school starts.
I would love to get to know all of you and I hope and pray you and all the CFers are doing well.

Becca

 

[rcq925]

Seana,

Hi again (I posted to you over on the adult board)!

I am about to turn 31 and have two children, Nathan, age 4 without CF and Hayley, 17 months with CF. I am an Adult Probation Officer and my husband, Shaun, works at a car dealership. We also have a 5 month old Chocolate lab, named Gabby.

We live in Fort Wayne, Indiana and attend the Lutheran Hospital CF Clinic with Dr. Chowdary.

Nathan is getting ready to start Pre-K, mornings only everyday of the week and he cannot wait! Next year he'll be off to all day kindergarden. I am lucky to have my mother at home with the kids so that neither of them have to be in daycare (they were both in daycare prior to Hayley's diagnosis)

Hayley was diagnosed around 3 months old after relux issues, which turned into respiratory issues. She had to have a Nissen Fundoplication (stomach wrap) due to severe reflux at 2½ months old and when her respiratory issues did not get any better after the surgery, they did the sweat test and our lives changed forever!

Hayley just had her birthday visit at the CF Clinic yesterday and I am happy to report she is doing wonderfully! She is 23.8 pounds (the 50th percentile) which they said is a perfect weight for her and she is 30.5 inches tall (25th percentile, she's a shorty!). They are really happy with how she is doing, I am just anxious to get the throat culture back to make sure she has no nasty CF bugs in her lungs!!!

 

[Seana30]

Wanted to say thanks to all for posting. I hope that we all can chat soon!

Seana

 

[rose4cale]

Hi Seana. My name is Shelly, 31 and a stay at home Mom. Married for 12 years in Sept. Ugh! We live in Iowa and go to the University of Iowa- Childrens Hospital CF clinic. I worked in a bank for 6 1/2 years and after my son's diagnosis last year, (plus my husband being transferred 2 weeks later) started staying home with him and my daughter. I am starting daycare in our home next week. We have 4 part time families right now. I tried to go back to work in June and like someone else said, it wasn't worth it financially. After I paid the sitter and taxes plus gas for the commute and dress clothes...I may have cleared $20 a day. Ugh! So I only worked one day. Plus, I mentally was not ready to go back to be honest. And I now hate pantyhose!

Cassie, my daughter, no CF is starting Kindergarten in a couple of weeks. She is excited and ready for some independence. She can't wait to go shopping with some friends. So funny because she is all about sports and hates to have her hair done. I hope that changes a little. She tried dance lessons and her little kicks and taps looked more like soccer kicks and football punts.

Cale, my son, with CF is all boy at 2 years old. He is certainly a Momma's boy full of love and kisses and hugs and of course spitting and hair pulling. He loves running, boating and anything with a motor. He drives one of those battery powered John Deere Gators like he was born in it. When he starts school I will probably look for work again, but nothing so restricting as a bank job. I will need something with a little flexibility as I do probably 99% of the caretaking for our children. My husband works 80 hour weeks being a manager of a major chain in Iowa. I don't resent him at all for his hours as we function pretty well as a family. A break now and then would be welcomed though!

I love my kids. I would do anything for them. As a family we enjoy boating, bike rides, walks, games, taking a drive, sports and evening picnics watching from the banks of the Mississippi River.

It's great to learn more about everyone here. It's about the only thing I get online for.

 

[moni]

Hi, My name is Monica and mom of Abby who is almost 16 months old. She was diagnosed right after birth thanks to the newborn screen. I had an amnio (they thought she was downs at 6 months) and they told me they tested for CF and it was negative - well, they never did test for it. My husbands name is Robin and he and I knew we were both carriers as we went through fertility and this clinic tests and if you are both carriers, they make you go through genetic counciling and if they say it could be serious, they woun't let you move foreward. Nonetheless, we were told that our genes would make the baby, if they got it very, very mild and had it been prior to the 5 years ago of testing, they would most likey say the baby had asthma. If they got it. Well, it was qiute a shock to hear she had it and she had a sweat test at 3 months old which came back borderline. We started seeing a CF doctor and he also said nothing to worry about. She had a repeat sweat test at around 10 month old which came back negative. But she tested for pseudomonis about 4 or 5 months ago and needed TOBI. So it is all very puzzling...she has colonized MRSA which doesn't surprize me - I am a nursing home social worker and we joke that we probably all have it as we are near it so often and if you don't suspect it, you wouldn't test. She has not tested again so far for psuedomis again. She does test for ecoli, which is also strange. She is tiny - she has been 20lbs for 3 months and grew an inch in 3 months so she is 29 inches long. She is finally proprtioned so the doc's aren't worried. They did test her pancreas and it was perfect - but she eats ALL DAY and doesn't gain, but I am very short (5 feet )So that is my story. I am trying so hard to let her be a normal kid. Thanks for listening!!

 

[Seana30]

As I have been reading these posts there is something that I realized. It seems that most of us had a hard time getting our children diagnosed. It seems that most of us had to fight hard to get any type of testing, and told that we were being being overprotective. I wonder why this is?? Anyone here not have a hard time getting the doctor to listen and believe you??

Hope everyone is doing well.

Seana

mom to Lauren, 14, no CF- Courtney, 12, with CF- Cameron, 10, no CF

 

[rose4cale]

Seana I had a terrible time getting Cale diagnosed. With our family Dr I voiced my concerns right away. I had been taking him in daily for weeks to have him weighed. He had reflux, bowels all day, 10-12 a day in the beginning down to 9 around a year old. He wasn't growing and I KNEW something was wrong. At his 1 yr check up I asked for a GI referral to a specialist. This "specialist" tested him for CF with a sweat test-negative. Put my baby under to biopsy his intestines and all turned out 'fine'. He told me it was a phase. A year long phase of pooping all day didn't set right with me. So I went back to my family Dr and told him I wasn't satisfied and wanted to go to the U of I. He gave me another referral and right away I could tell they knew it was CF. We did blood tests and then had our life changing answer.

NEVER understimate your maternal instincts. My husband even thought I was over reacting.

Last week they had in our paper that Iowa is making CF screening in infants mandatory. That would have saved a year and a half of frustration.

Cale is doing so well though. He gained 15 pounds in his first year after diagnosis. He is holding at 30 but is finally growing taller. He does great! He is my blessing!

 

[CFHockeyMom]

Yep, it's hard to get Dr's to think CF unless they've seen it before and even then I'm not so sure. My husband actually told our Ped that he suspected Sean had CF because he was salty. At the time we didn't know about the digestive issues but were aware of the lung issues and Sean certainly had those. Our Ped asked us if we had any family history and when we said no, she dismissed CF. Of course, after just two more short weeks, he was hospitalized with pneumonia and failure to thrive. By then I think our Ped may have started to think we were on to something. Sean was transferred to another hospital with a CF center (coincidence? I think not.) and diagnosed the next day.

Our CF Dr. later told us that ignorance about CF is still very prevalent among the medical community and that kind of "misdiagnosis" is VERY common. Fortunately we only had to deal with it for a few weeks. Seems there a lot of people that had to fight harder and longer than we did. It's a shame especially when you consider how easy the test is.

 

[cfmomma]

Hello, my name is Sheli and I have a five year old son with CF. I am 28 and have been married for six years. We live in Dallas Texas and my son sees Claude Prestidge at Childrens' Medical Center of Dallas. My husband works as a Sequil server DBA (i still don't know what that means!) I used to teach preschool art, but now I stay at home and design jewelry; it gives me much more flexibility and I even designed some CF jewelry.

My son will be starting kindergarten in a few weeks and I am a nervous wreck. I am so excited for him and I know he will have a blast, but I gonna miss him. I have to force my self to not be paranoid about what "germs" he may be exposed to at school and I am a little worried about him taking medication at school. Despite my concerns I refuse to hold him back and keep him from being the kid he needs to be.

He was diagnosed at 18 months. His birth was very difficult. I was in labor for 30 hours and they finally pulled him out with forceps, ouch. He had a lot of fluid in lungs, and the NICU team came down and helped him breathe normally. He did not have meconium ileus, but his first poops were very hard and sticky. I remember asking the nurse for extra baby wipes to clean him up and she thought I was crazy and blew me off. At his first pediatrician visit he had lost over a pound and they were concerned so I had to supplement with formula. He seemed to do OK except for the fact that he was always in the low percentile for his age and would wheeze sometimes. He got mild pneumonia at 15 months and then at 18 months. After the second bout with pneumonia his nurse practitioner (his pediatrician was on maternity leave) suggested a sweat test just to rule out CF. I called from work the next day to get the results and was told to "go ahead and come on in to talk".

He has been doing great since diagnosis. He spent one night in the hospital after surgery, he had nasal polyps, adenoids, and tonsils removed. No pneumonia or psuedomonas cultured yet, only some mild colds. He struggles with GI issues. His weight is normal for his age but he does get a lot of stomach aches and stinky poop. He goes to the clinic next week and hopefully will have a good visit. He's a tough kid but turns into the biggest drama king when he gets blood drawn. He refuses to let me hold or touch him and watches as they stick the needle in. THen he freaks out when they try to put a bandaid on him! He cries for a good twenty minutes, he falls on the floor in the middle of the hospitals nasty floor and screams "Why me, I give up, oh my gosh, I wish I was a fish! Other than that he does very well with his CF routine.

He's a great kid and I love him more than anything!!!

 

[rose4cale]

Sheli-

"...I wish I was a fish..." Too funny!!

 

[anonymous]

Hi everyone,
My name is Marylou. My son Dylan is 19 months old and has CF. My husband, Fred, and I found out we were both carriers of the disease 4 months into my pregnancy. We both decided at that time there was nothing that would stop us from having this baby we loved so much already. After Dylan was born he was sent to a hospital that had a NICU about 30 minutes from our home for non CF reasons. We took him home 3 days later and I was nursing him. He was eating a full meal every 20 minutes with a few 4 hour naps in between. He was also a very fussy baby. About 10 days after he was born we found out he had CF. We were at another doctors appointment and our pediatrician told us over the phone. (Well that is not the best way to go!!!!) I immediately started to cry. I gathered myself and went to the waiting room, where my husband and son were waiting for our doctor. He could tell I had heard bad news. Just him looking at me made me lose it completely. (I think the cry really helped me though. A good cry will never hurt anyone.) The pediatrician had set up an appointment that day for us to go to a CF Clinic in Springfield, MASS where Dylan was put on CREON 5. That night when we went home after Dylan ate his last meal around 10:00 he slept until 7:00 the next morning. His mood had improved and he was a totally new baby. We also found out a few days later that his pancreas was not working at all. No wonder he was in a bad mood, he was STARVING!!
Dyaln actually to this day is a calm and very good natured child. He does have his moments (hair pulling, and throwing things) but he is doing much better. We go to the CF Clinic at Boston Children's hospital every 3 months for his check ups. He now weighs 26 pounds and 12 ounces and is 33 inches tall. Looking at him you would never know he was sick. We are very happy with his development.
My hisband works for Longview RV as a sales person and I left my job to stay home and be with Dylan. We struggle, but it is worth every struggle to spend every day with him.
It is great to read all of your stories. Sometimes I feel alone with the disease. I have family, but they don't understand what it is like to have a child with CF. Keep up the posting.

Marylou

Child: Dylan 19 months w/cf

 

[denise]

Hi,
I had to argue with the doctor to test my son and then the nurses laughed at me. I was right they were wrong<img src="i/expressions/face-icon-small-sad.gif" border="0">
My husband and I live in sc with our three sons. I teach math at a local university and my husband designs web sites. He works at home and babysits while I work.

Our two yearold was finally diagnosed after a bowel obstruction surgery last summer. This is the one I argued with the doctor about. He always believes me now. He is now a VERY active and naughty little boy. He is into everything. oh by the way his name is Robbie.

My four year old Joey does not have cf and is so sweet. He is scared at everything and at times is jealous that he does not hve cf.

My five year old Nicholas was diagnosed with cf after they tested him because his brother had surgery. He is very serios and Likes everythin to be right. He blames our cf doc for giving him cf. I am glad he does not dirrect this anger at me. He lost it last time at the cf doctor. He was kicking and fighting the doctor off. He really has not even adjusted to cf yet.

This was a great idea. I enjoyed reading about everyone.

 

[moni]

Hey Marylou!!

My name is Monica and I live in Webster, MA! I actually bring Abby who is 16 months to UMASS. I was going to bring her to Boston Childrens, but we got into Dr. O'Sullivan who is very good. In fact, there is going to be some kind of publication that UMASS and Dr. O'Sullivan is one of the best CF places to go. What I also find funny is that all the CF doctors at UMASS and Boston Childrens actually meet once a month and pool all of their cases together. SO even though I have Dr. O'Sullivan, it may actually be another doctors recommendations that we try. Funny huh? I am a social worker in webster and my social work consultant is from belchertown. If you ever feel like talking, feel free to email me. I agree that people don't understand the illness. My parents treat her like she is going to die tomorrow and I try to tell them that she is relatively well. There is also an EMT in Webster, she is 21 and she has severe CF - both lung and enzyme stuff and she has a port-a-cath and works full time and you would never know. Oh - my email address is mzicuis@hotmail.com. Bye, monica

 

[anonymous]

Monica, my husband and I went through a very similar experience. Our daughter (also named Abby!) is a carrier, but the baby we're due with on Sept. 4th has been diagnosed with CF. We were also told that because of the mutations that we carry, if our baby were to have CF, it would be very mild. We live in Norton, MA, and right now are struggling with the decision as to which hospital to take our baby for treatments. We talked to CF doctors at both Children's and MGH and heard very different stories. At Children's we were given the same information we had heard in our genetic counseling meeting, except even more positive. That doctor felt that had we not known we were carriers, it would be possible that our baby would go most of her life, perhaps ALL of it, without ever being diagnosed or having any issues. The doctor we met with at Mass General was reluctant to talk about our individual case, and felt that all CF patients should be treated similarly, with the exception of enzymes, which is dependant on digestive issues.

Anyway, it was very interesting reading your post and finding that you seem to have gotten similar information from your genetic counselors. We're still learning so much about CF, and it's comforting talking to other people who have gone through what we're beginning to experience.

-- Jenica

 

[anonymous]

Hi everyone,
I have a two year old boy Joseph W/O Cf and a 3 mth baby Ruby with CF......
I live in the UK in a city called Hull...in East Yorkshire...My husband Nathan works for an Engineering company and i am a Police Officer. I am suppose to be going back to work in January but to be honest i dont think i will. The Dr's say there is no reason not to go back but it is such a demanding job which will always come second to my children....
We had a tough tough first 2 months with Ruby she had M/I and had to have surgery straight away....she then had an illestomy for 1 and a half mth....and went back in for surgery.......3 ops later she is now back home........You wont believe how relieved we were to see Poo!!!!!
WE had to wait 1 month for Rubys results.......via a blood test.....We then had to wait a week for Joes sweat results which came back negative......Thank God!!!

.....I am still struggling with this disease but i just love reading all of the entries ,. its just great.....Nathan is so so supportive and that really helps..

This has just changed me completely....I cherish every moment i have with my family...
Joe loves his little sister and constantly wants to give her kisses....usually with a snotty nose..Arggghhh...

WE have just bought a caravan so we can go away at the weekends and enjoy every moment with each other.....I would like more children but have to look at the options.....I dont feel strong enough to think about having another child with CF..but i dont want to rule out the possibility of Rubes having a little bro or sister to boss about..Ha Ha
Rubes is doing just great...She is on all the right Med and i am lucky she was caught earlier so she hasnt experienced some of the other problems mentioned......
However, when she sneezes or coughs (which is not often....but just like when she clears her throat....) she does sound chesty...and at the moment when she crys her throat sounds sore...we have all had a cold so i think it is just viral...but it does make you panic..I am at our clinic next Fri so i will ask...


i send love to you all and Heres for a brighter tomorrow...
Paula (unable to login at the MO...)