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I was given the suggestion that I think of daily themes for the blog and write something along those themes for that day. I think it's a great idea and here is how the blog will go now:
Monday- Mommy Monday (Showcasing a new mom or every week, especially those who have CF children)
Tuesday- Trusting Tuesday (Inspirations to help us learn to trust ourselves and trust others with our CF children)
Wednesday- Wishing Wednesday (This is a day for just about anything, from things that we wish for our children, to wishing for ourselves, to wishing for life. Picture day and such for this day)
Thursday- Treatment Thursday (The different treatments that come with CF and how they are working, ideas, comments, and suggestions on how to do them better, or easier with our children)
Friday- Frustrating Friday (Let's us get out our frustrations with CF and other childhood things)
Saturday- Step Up Saturday (This day is a day to challenge myself and to challenge others to step up and do something new, or stick to a schedule, or do anything they have been putting off. Each week we'll update our progress)
Sunday- Showcase Sunday (Showcasing a new person with CF or a CF mom every week. Especially those with blogs)
So tomorrow is the day I've been dreading for a while now. Naythan starts school. I'm worried about the germs and I'm worried about the other kids coming in sick.
We've had our meeting with the teachers, they will be giving him his meds and making sure things are clean as much as they can. He's in a class with 15 other kids. One of them is bound to bring some kind of sickness to him. I'm making sure we're getting in all his treatments right now, making sure we're going to do everything possible to stay healthy. Unfortunately, I'm afraid it's not going to be enough.
I'd like some thoughts on what you did to keep your little CFer healthy when they first started school? I'm lost at what is my best idea for Preschool? The teachers said this isn't their first CF child and that helps relieve some of the stress but I'm still not sure if that's enough. Help me figure out this school stuff please!
CF and Pregnancy is the main topic right now going on and a few people have made comments back and forth whether or not they would have a child if they had CF. Here is my opinion: (THIS IS JUST MY OPINION DO NOT SEND HATE MAIL PLEASE!)
I believe that CF is a horrible disease. I wouldn't wish it on my worst enemy. With that being said, I would have never terminated my pregnancy with my son even if I knew he had CF. This is my child. Would I have gotten pregnant again after if I had known about CF first? Honestly, then I would have told you NO! I wouldn't have put it on another child. But now, I think of it this way. This is my child, this child is born with whatever they are born with because God (or the Goddess) (or whatever religious figure you believe in) decided this is what will make my child the person they are and I don't have the right to change that.
My son is a wonderful little boy and he deserves every chance in the world, just as if he didn't have CF. Now, I ended up pregnant 2 months before I found out my son has CF. I had a choice at that time to end the pregnancy I had. I would have NEVER done that. I love my daughter very much, and she thankfully doesn't have CF. Now I don't know if either of my daughters are carriers, that will be tested once we know what Naythan's markers are and it'll make it much easier to test. I'm debating testing myself at this point.
What do you think about CF and pregnancy? I would have liked to know that my child has a possibility of having CF during my first pregnancy. I was never tested as I was in a little town in Iowa. My son was born in a hospital in Florida, and CF was not a newborn screen at the time. If you have a baby, please check to make sure CF is a newborn screen. If it isn't, ask your doctor about screening for it. It's much harder if you have to wait years for a diagnoses. I would have rather known from the beginning. A lot of the things I let my son be exposed to from a young age I would have NEVER done had I known.
I would have never had the problems I had with the food and things with him and weight gain as a child. Please let me know how you feel, and let others know how you feel. I'd love to see your comments!
Yup, we haven't at any point in the last 3 years had any genetics testing done. This you may ask is impossible with CF being a genetic disease. Well, apparently all those times I asked about it, they lied to me! So, now the new clinic has to do all this testing that should have been done 3 years ago. Oh well, maybe now we'll figure out his genetic markers and maybe we'll get into some clinical trials and help do our part to find a cure! I really believe everyone should do clinical trials! This way we'll have a faster way at finding drugs to help the disease and possibly a cure at some point in the near future! I hope that we'll figure this out and get a chance to help do our part.
I am totally livid at trying to do a video blog. I thought yesterday I would try and do my first video blog for you guys, so you can see what CysticMom looks like and get another glimpse at Naythan's fun self. Unfortunately, the video took, but the audio went to crap. So, today I will work on trying to fix it! I will also be posting another blog on the horrible CF care from Children's hospital again. Considering the fact, we are gone, but the care will remain the same.
I know that we should be doing a blog about Naythan, but today Naythan is posting a blog about the soldiers. His uncle is a Soldier and wants to show him that he loves him.
The Final Inspection
The soldier stood and faced God
Which must always come to pass
He hoped his shoes were shining
Just as brightly as his brass.
Step forward now, you soldier,
How shall I deal with you?
Have you always turned the other cheek?
To My Church have you been true?
The soldier squared his shoulders and said,
No, Lord, I guess I ain't
Because those of us who carry guns
Cant always be a saint.
Ive had to work most Sundays
And at times my talk was tough,
And sometimes Ive been violent,
Because the world is awfully rough.
But, I never took a penny
That wasn't mine to keep...
Though I worked a lot of overtime
When the bills got just too steep,
And I never passed a cry for help,
Though at times I shook with fear,
And sometimes, God forgive me,
Ive wept unmanly tears.
I know I don't deserve a place
Among the people here,
They never wanted me around
Except to calm their fears.
If you've a place for me here, Lord,
It needn't be so grand,
I never expected or had too much,
But if you don't, Ill understand.
There was a silence all around the throne
Where the saints had often trod
As the soldier waited quietly,
For the judgment of his God,
Step forward now, you soldier,
You've borne your burdens well,
Walk peacefully on Heavens streets,
You've done your time in Hell.
Today I'm having a bit of therapy in the form of blogging for Naythan.
Monday this week we had our SSI hearing. For those of you not in the United States, SSI is the Social Security part of our lives. They pay for you to be without a job if you have a proven medical disability. Well here, Cystic Fibrosis is considered one of their medical disabilities, but it has to be severe according to them. I had first applied for Naythan back in 2006 and was denied with them telling me he would grow out of it. Well, 3 years later, we finally got an appeal hearing, this time I think the judge finally seen my side of Naythan's life. He's got so much to do, and is fragile in an open air setting that I think we've won. I am hoping so because this will make Naythan's life much easier when he grows up. We told about a week. Monday isn't getting here fast enough.
Secondly, Naythan is having a new test done, as they aren't sure his enzymes are working correctly. When we first started the new clinic they did a fecal fat test to check to see how it's going. Well, the numbers weren't good, they were really bad. Well, right now we have to do a 3 day fecal fat test. Yup, you read that right. I have to take Naythan off his enzymes for 3 days, and write down EVERYTHING he eats and drinks. Well that's not the bad part, the bad part is I have to collect every bit of poop he has. Yup in a container and store it in my fridge, next to my food :(. Well, the worst part over that is, if you know what CF poop smells like you'd die. A person with CF has very FOUL smelling bowel movements. A person with CF on enzymes it's not so bad, but he's going to be without them for all 3 days. That brings us to the bad part for him. Without the enzymes the stomach can get horrible cramps, large amounts of pain, and lots of gas. I'm hoping he'll be ok over the weekend to do this. I'll just have to rub his poor little belly a lot.
I'm just frustrated that the old clinic told me nothing was wrong before and ignored me. Now I'm having to actually find out what is going on in my poor little boys stomach. Oh well, Good night my CF and non-CF friends. I must get some rest. I will blog tomorrow. We're heading back to the Chiropractor to get some much needed adjustments.
Today of all days, I decided to check to see how many followers I have. Unfortunately, it's only 7 of you reading our fun little blog here. So, if you are reading, pass out my blog addy so that I can get more followers for Naythan.
I know it's been a while since my last post but things have been crazy here. Naythan has been off his PICC line and antibiotics for 2 weeks now. He's staying healthy for the moment. We have our SSI hearing on Monday after waiting for 3 years for it. They were hoping I would back down but not this mama. I have other plans for my son. I want him to be taken care of for the rest of his life.
Naythan had his first exacerbation the end of October. We were on IV antibiotics for 2 weeks. I was so angry at those doctors I thought I was going to pop a vein in my head. The Pediatrician was the one who finally got the CF docs at Children's to admit Naythan to the hospital. This doctor made me so mad. He told my Peds doc that the only reason he was admitting Naythan was to make her happy. How could he not think something was wrong with Naythan? He was coughing at this point for 8 1/2 weeks, which him coughing isn't normal for him. You are probably thinking, If you don't have a child with CF, isn't a cough normal? No, in a child it isn't normal. The coughing on a daily basis comes with age, because there will be more damage to the lungs. His lungs right now don't have any damage, and he shouldn't be coughing.
After we finally did get admitted, that Tuesday (NIGHT) because the hospital was so over packed and no room for anyone. There were 3 other CF patients that were on the floor. All with exacerbations. They hooked him up to an IV right away and got the Anti's started right away. They messed up his meds, which is ok because I brought my own from home and made sure I got them in him. Some of his meds weren't even in the syringes for him. They were empty and the nurse thought I was crazy when I told her it was empty. Anyways, I digress...
The next morning the other doctor in the office (I guess he's coming on as a full time doctor now) showed up with a bunch of medical students. The thing I hate worse is a bunch of kids my age all staring at me weird as I talk about how sick my son is. Well, this doctor got his ass handed to him that day. He came in telling me, oh we're only going to give him 2 days of antibiotics and send him home. WHAT?! I don't think so. I told him there was no way it was going to happen. I had a daughter at home with possible pnuemonia and I wasn't taking him home like that. He said, "Fine, we'll send him home with oral antibiotics and he should be fine." WHAT?! I swear I was going to drop my jaw at this point. I told him hello we've been on 3 other oral antibiotics and none of them have worked. He tells me, "Then what do you want to do." This is where I stood up for my son at this point. I told him "You're going to do the whole course of antibiotics, give him a PICC line and we'll go home and do them." I swear I saw a couple of med student's mouths drop.
He looked at me like I was an alien and at this point I probably was acting like an alien. I hadn't had a good nights sleep in 2 months as this cough had kept him up at night and I had other sick kids at home. He said to me the alien "Are you sure that is what you want?" Oh no I just told you this to make myself look stupid, oh course it's what I want. It's what I knew my son needed. I am glad I made the doctors do it. Naythan no longer has a cough and is feeling better. Unfortunately, his weight is still low, and only in the 50th percentile but it's getting there.
We did switch clinics though too. I got tired of the crap from this one. Yes, I do drive 2 hours one way to the new clinic. But you know what? This clinic is my dream clinic. They have done TONS of testing for him, stuff the old clinic never did. They are working with me diligently to get Naythan to a healthy spot. Almost all of his tests have come back normal. He had tests done for vitamin levels, allergies, and other things. All these are perfect which means I'm doing my job right. We're only waiting on the fecal elatase test to see if we need to change enzymes for him. I don't think the ones he's on are working for him. I'll blog more tomorrow. I think you've had enough today.
Hey Everyone, this is Naythan while we were in the hospital doing his Vest for the first time. He loves it and hopefully all of you will love his little video.
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