Thursday, September 30, 2010

What's Up with the Kids...

After a five-month absence, I am returning to my blogging world. C'mon... you know you missed me! There is a lot to say and I really don't want to sit here all night typing it all, so I will begin with the most important information some of you have been wondering about and I will fill in the rest in the days to come.

What's up with my kids?

Those of you who are friends on FB have seen several postings over the past few months requesting prayer for John and Jossilyn regarding some medical testing they were to undergo. I did not elaborate on the reasons, and only a handful of you actually know. I'm ready to explain...

Loooooooooong story short, John has dealt with unexplained gastro-intestinal (GI) issues since birth which we have seen numerous doctors for over the years. Basically, he has no natural urge to stool. His body is unable to tell him when he needs to go. We have always been told that he would outgrow his difficulties or his problems were psychological (?!?). It never seemed like a huge issue to me – I mean, it's just a poop problem... right? I had planned to take him to a pediatric GI in Cali, but then we moved and it just got shuffled to the back of the list.

Then we had Jossilyn.

The day she was born, she passed her first stool while I had her diaper off and my Mom and I happened to notice that her rectum prolapsed when she pushed. I immediately said to my Mom, "She's not normal, either." As the days and weeks went on, it became painfully apparent that Jossilyn was unable to stool without assistance. I won't elaborate on that. Over the next 4-5 months, this became a daily ritual. As soon as we sensed she was becoming uncomfortable, we took her upstairs and "helped" her pass her stool. This process often took half an hour or more.

In the first few weeks of her life, James and I also noticed that Jossilyn was extremely raspy when she breathed. She always sounded congested. The pediatrician assured us that c-section babies often have residual fluid in their lungs since they don't pass through the birth canal and that raspy sound would soon clear up on it's own. It didn't. She is still quite raspy.

After several doctor visits, our pediatrician concluded that having two children in one family with similar GI issues was not a coincidence and that there was some testing needed. We finally saw a pediatric GI doctor who determined that most likely John and Jossilyn have two different issues. One possibility for John is a condition called Hirschsprungs Disease which requires a very invasive surgical fix. In Jossilyn's case, however, the specialist agreed with my pediatrician that there is a definite possibility that she has Cystic Fibrosis (CF).

I broke down. The life expectancy with CF is the late 20s. It is a life-altering, ultimately life-ending, disease that would rob my daughter of a normal life. I couldn't even let myself entertain the possibilty. So I went into defense mode. I withdrew. I stopped answering the phone, emails, and texts. I stopped blogging. I didn't put myself in any situation that would require me to talk about it because then it became real.

I know the chances of her NOT having CF are just as good, if not better, but it's gamble I'm having having trouble taking. As it stands right now, I am supposed to call the Children's Hospital in Houston and schedule both John and Jossilyn for CF and Hirschsprungs testing, but so far, I haven't made the call. I'm scared. It's hard to admit, but I'm terrified. As long as I don't make that call, I can keep on pretending that they are fine. They probably ARE fine, but something is causing their issues and I don't want that something to rob my children of their lives or of rob me of my children.

So there you have it. That's what is going on. I'm still not great at talking about it. But I have always been honest on this blog and that shouldn't change now. If you have questions, I will try and answer them, but really, I'm NOT ready to face this yet.

Want to help?

Please pray first and foremost for my children's health. Secondly, please pray for the strength for me that I need to see the testing through. I know that the sooner I have answers, the sooner we can start treating them. I know that. BUT... I waited 34 years to have a daughter and, if by chance she does have CF, I want ONE year to enjoy her without an expiration date hanging over my head. So just pray. Please.


Anonymous said...

Hi Jeni
I read with a heavy heart your story of your children. I am a 58 year old with Hirschsprung's. To give parents like yourself hope and support I run a support group that you can find at We have parents like yourself from all over the world.
Sometimes Hirschsprung's and CF show similar symptoms.
Never give up hope

Jeni said...

Hi Gerry,

I looked at your site. It was very helpful. I will hang onto the URL in case my son tests positive for HD. Thank you so much for the encouragement!


Bev Wilson said...

Honey, tell me when and I will take off school and come down there to go with you, cry with you, laugh with you, or to do what I like most, just to be with you. Love, Mom

kari said...

Oh Jamesiffer.....nothing we could say will make this better...just know that we are praying for you and we love you.....Love, Steve,Kari, and Kids

Jane K said...

Jeni, Harold and I have faith, lots
of it! First my I suggest thay you
think of all the good things that you can praise God for. Second, my I suggest you research a Bio Mat. 33
years this has changed my life. I feel lead by God to share this because most people have not heard
about it. FDA approved. Prayers, Jane

izzy said...

We'll all pray for you and your little girl. She looks so precious and gorgeous in the previous post. Please do update us.