Question about symptom my step-son is having

[julie]

Thank you, I really do enjoy helping out and I have learned a lot from others on this site as well, it's not just a one way street. I don't think it's that I know so much about CF, but I seem to know about benefits and I get really upset when people, especially families where someone has CF, are denied from the necessary benefits (medicaid, food stamps, cash assistance, HUD....) that they really need and deserve. I've had to "barge" my way through many denials for benefits and the end result has always been in my favor. So.. I feel obligated to share what worked for Mark and I with the rest of the CF cmmunity, that way others can benefit. I really do appreciate your nice comments and encouragement.


Katina, I am very saddened and a bit disappointed that I havent heard from you about the Food stamp stuff. I really can assist you if what you posted about income and family size is correct. But if not, I don't appreciate you posting what you did, you set out to prove a point that is in fact untrue if that isn't your true family size/income. You do qualify though based on what you posted. Please email me if you are interested.

Julie

 

[jenniferp]

WOW! How did I miss all of this?
Julie- I'm sorry you got attacked, that was not called for, your very helpful.
As for the anony. poster that thinks I don't care about my step-son, you could not be more wrong. I don't need to justify myself either and I know that, but I'd still like to say this; When my husband and I first started the custody battle with his x-wife my husband (boyfriend at the time) was living with me. Prior to us getting married I lived in a mobile home, that I had paid cash for. So in order to help him fight this battle I sold my home, moved on base and gave him everything I had. So, please don't assume I don't care about CF or my step-son. I love him very much. I admit that I didn't know as much about CF before as I do now, but my husband always does and always has taken care of my step-son when he visits. He gives him all his medications and does all of his treatments. He is not a baby, he is almost 12 and I don't feel right trying to take over something he and his father have under control. Okay. But things are different now, I want to be the active parent to this baby, I know my husband can handle all of this very well, but I want to take care of this baby and I want to do everything right. I'm sorry you think that means I don't care for my step-son, but your wrong. I just know that he is well taken care of by both of his parents and I want the same for this baby. I have to say that it is very annoying that his mom won't share information with us, and up until now I accepted it because my husband accepted it and it really wasn't my place to but in. I don't know if you have a step child or not but you have to be very careful and pick your battles wisely, otherwise the child can turn against you and see you as the one causing all the problems with his parents, which is really bad. The reason for my sudden interest is mostly due to things I have learned on this site pertaining to having 2 kids with CF, such as the spreading of bacteria and viruses. I wanted to know what my step-son has cultured and I wanted information on how that might effect the baby, or vis virsa, if the baby was hospitalized and caught some type of bacteria or virus I wanted to know how that might effect my step-son. It's just a pain in the but that she can't be civil with me, for our childrens sake.

Okay now for the update I wanted to post:
My husband took my step-son to the CF Clinic yesterday and they did the PFT and he tested at %101! The Dr. was very impressed at how healthy he is, he asked what kind of activities he does and my husband told him he does it all, and like some of you had informed me, the Dr said let him do whatever he wants to. We were glad to get that news. The x-ray that was taken and showed a spot on his lungs, was not right, the Dr. said it was just a foggy area because his lungs were not expanded enough when it was taken. So, needless to say were not worried anymore, and that is such a relief. He also gained 2 lbs since he has been with us, he now weighs 82 lbs, which they said was a good weight for his height and age.
Thank you to everyone who gave me information I really appreciate it.

 

[lovingBenandCambree]

Jen,
that is so exciting that your step son is doing so well. What good news. I can empathize with you on picking your battles and have to commend you for not trying to be his mother. My parents are divorced and he doesn't need another mother but someone that cares about him and about his dad which seems to be exactly what you are doing. I know some step parents try to step in and take control only to have it backfire on them. It is definitely not an easy thing to be a step parent but you seem to be doing awesome. Good luck with baby Andrew. Keep us informed on how he is doing when he is born.

Emilee

 

[DietRootBeer]

Hello,

I have read your posts before and I can completely relate. I am 30yrs old and a step-mum to a 9yr old with CF. When I married my husband he was 5. Although we wanted kids in the future I got pregnant accidentally ( all of our birth control attempts failed) and I found out I was a carrier too at 4 months pregnant. To put another spin onto the situation my husbands gene is unidentifiable on any test out there so an amnio could only pick up my gene not his. So I decided against the amnio and hoped for the best. Carrying him for 9 months and then having to wait another 6 weeks for the sweat test was ...well...painful but he did NOT have CF. It is very hard to be a step-parent. We are lucky because we all get along. My husbands first child was the result of a one-night thing ( he was in high school,it was his only sexual experience) so their previous relationship did not interfere in ours because there was none. We decided a long time ago to keep things as peaceful as possible so both our kids could grow up in a happy home. We do take on alot financially to keep the peace. Like you guys he is not in the same city ( about 3 hours away) and we suck up ALL the travelling and costs. We have him about every 3 weeks and for half of his holidays. They have never been to court or even really fought over anything. This is mostly because we do not have the energy to fight with her, our lives are just too busy and I do not want the three of us to get consumed into something that we can all avoid. I am rambling here...I just wanted you to know that you are not alone. I have been in your shoes.

 

[anonymous]

DietRootBeer-
I can't imagine having to wait not knowing if the baby would have CF or not, but knowing he had a 50/50 chance. That must have been very difficult. I know a lot of women on here say they didn't care because it didn't make a difference to them. but for those of us who have no patience and worry ourselves sick it can be a nightmare of worry. You must have been above relieved to get those results.

My step-son's flight left at 11:15 am today to take him back home, and my poor husband is so depressed. I couldn't go with him but he stopped by my work to have lunch with me before he went back to work and he was obviously upset. It will be nearly 5 months before we see him again and that is so hard for my husband. He is a really good father. Well, at least we have a house full of kids to keep him busy and we'll be adding one more in about two weeks. If only he could have stayed a couple more weeks he could have been here when the baby's born and met his new little brother, whom he shares a very special bond with already.
Jen

 

[anonymous]

Hi Jenniferp,

I was so upset when I found out I was a carrier too. We did decide to keep the baby no matter what but it was always in the back of our minds. It was torture but we lived<img src="i/expressions/face-icon-small-smile.gif" border="0">) Congrats on your new baby!! Our boys love each other too...Since I am choosing NOT to have more babies I am glad that they are so close. You put him on a plane all by himself?? WOW!! My step-sons mum will not even put him on a bus ( and we would pay his ticket!)). Have you ever considered re-locating to be closer to your step-son? Seeing him only a few times a year must be ridiculously hard<img src="i/expressions/face-icon-small-sad.gif" border="0">

Take Care

 

[anonymous]

Well, we have thought about moving, but my husband is active duty USMC and we are stationed on the east coast, step-son lives way out west, NM. And all of my family and my husbands are on the east coast, plus my son's father and his family are also out here. So, it would be pretty devastating to move away from everyone to go somewhere neither one of us want to live. But, it has crossed our minds.
Jen