Friday, December 11, 2009

UPDATE INFO

NAYTHAN got admitted on Wednesday to the hospital. I'll be updating as soon as I can get online for a while. Just so you know I may not be out of here until tomorrow or later.

Tuesday, December 8, 2009

Trusting Tuesday

Hello all dear followers. Today is trusting Tuesday! I know we didn't have any blogs for Sunday or Monday and that's because I have yet to find anyone to write spotlight blogs for me. If you would like to be featured or have your blog featured please leave me a comment so I can get with you to have you write something up. I'd love to showcase as many people as possible. So that's your challenge from me, and I'm trusting that I will find a lot of people who want to be showcased. 

Along the lines of trusting people, tomorrow is clinic day. I'm quite worried about a lot of things. Naythan's having his fecal fat test re-done because the stupid lab did it wrong. So I have to take it with me to the lab up at the clinic. Oh fun a 2 hour drive with a container of poop. Not my idea of fun. Also, he'll be getting an x-ray of his bowel to see if he is having a blockage or other troubles.

Naythan also has his first PFT's done tomorrow. I'm totally not sure what is going to happen. He's not feeling well at all. I'm also worried about all the snow. The city I'm going to is expecting at least 5inches of snow and winds up to 55 miles an hour while I'm there. So I'm making sure to pack just in case of an emergency.

Saturday, December 5, 2009

Challenge

Today is a day of challenges. My challenge for myself is to make sure I get all the housework done this week. My challenge for Naythan is to make sure I get all his treatments done. I think he's getting sick and it's important for him to get them all the time. He's got clinic on Wednesday and hopefully he won't be sick and get stuck in the Hole (hospital). I just want him to be able to enjoy school and be able to attend next year. Right now, if he's only gone 3 days and already getting sick I'm not sure how it's going to work. 

I challenge all of you to tell me what you plan on accomplishing this week and actually do it. I'll check back in with all you next week!

Friday, December 4, 2009

A little bit of Stress relief

Frustrating is the easy word for today. I thought today was going to be a good day. I rolled out of bed on the wrong side of it. I woke up late, but lucky for me I got my daughter to school with a few minutes to spare. That's why I get up earlier than usual. The thing I am most frustrated by is the Social Security system's new rules on how back pay for children is to be used. Before it used to be that back pay was allowed to be used as the parent seemed fit. Well, not anymore. I have to open a bank account for just that money, if I need to use any of it, I have to go to the SSI office, ask in writing, to be able to use the money from the Supervisor. Even then, it can only be used for items pertaining to his disability. Which, geez, that really kills getting a new place with that money like I had planned. So, figuring I need to spend the money a different way, I've been thinking about items, that would make life easier on Naythan. I know we need a better vacuum, considering we have pets. I am thinking about a couple air purifiers and maybe some salt lamps. Other than that I'm completely clueless on things that might help Naythan. Please, my dear readers help me with things that might help him since I do have the resources to do it and get him these items now! Trust me money is no option when it comes to what he needs since it's there for him to get these things.

The next thing I'm frustrated with is that my 6 year old daughter, Lita, decided she was going to push Naythan down the stairs yesterday. Unfortunately, she admitted to it. She'll be talking about it in counseling on Tuesday. Naythan is ok, just was a little shaken up.

The last thing I'm frustrated about is the fact that I'm afraid Naythan is getting sick again. He's been coughing and sneezing all day. He got his allergy meds before bed but he was still coughing in his sleep. I am hoping and praying that it's just allergies and nothing more. Only tomorrow and how he's feeling and acting will tell. He was a bit whiny and cranky today. Well, we'll just have to see.

Thursday, December 3, 2009

Update time

In fashion of Treatment Thursday, I thought I'd bring up the fact of my son's SSI hearing. We finally got approved. We had to today go down and give all updated information seeing as we applied 3 years ago and a lot has changed since then. Well, since we have waited 3 years for his SSI we are getting the back pay. Well, they have changed their rules with how the back pay is used now. 

Now, instead of you just getting the back pay and being able to use it for whatever you want, it has to go into a special bank account. You can only use the money for items pertaining to the disability. Well, that being said, we also have to ask for permission and it's up to the supervisor if we get to use the money for that. Unfortunately, for me, it kind of sucks. We were hoping to use the money to be able to get a new place. 

Well, what I need from you my readers, what do you think would be items that would be good for us to get to help Naythan's Cystic Fibrosis. Not only do I need items, I need to know how they would help him. I am not even sure what would be needed pertaining to his disability considering now we have the money to be able to do it.

Wednesday, December 2, 2009

Time for a Wish

Right now my wish is for there to be a cure for Cystic Fibrosis that way my little boy can get a chance to just run and play and not have to do all the million things he has to to stay healthy. I want to be able to have a normal little boy who doesn't have to do treatments or to take the pills he has to take. I want a chance to smile each morning and just run out the door without thoughts of what things will I have to make up later, because he won't get a chance to do them this morning. I want to be able to go out to eat without having to pull out pill containers for my 4 year old to be able to eat. I want to just go to regular doctors appointments without having to go to a million more to keep him healthy. I want to be able to let him go play in the dirt, play in the mud, let him just do whatever the other kids would do. I wish I could just start over and find someone else who would have not made my child this way. Then again, I wish that I still did everything the same, because if I hadn't, my son wouldn't be the person he is today. 

Today, I really wish the best for my son. For him to grow up, find his true love, and be happy. That is what I truly wish above all else.

Tuesday, December 1, 2009

Learning to Trust

Here for our first Trusting Tuesday....
 Today I learned that I have to find enough trust in myself to learn to trust those I was leaving my son with for 1/2 day preschool. I was scared to death to send my little boy off to a place where I couldn't control the environment and deal with keeping things clean. Tons of germs and tons of sick kids. Well, I had a teacher meeting and they have dealt with CF kids before. I have trusted myself to send him. He is so much happier, and is enjoying himself at school. I am trusting his teachers to keep things clean and know his needs. They let him take his pills on his own and such, so he's happy and growing up! Maybe as we see that he'll stay healthy, then we'll be lucky and he'll be able to attend regular school next year. Time will only tell.

Monday, November 30, 2009

Our new Blog Schedule

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)

First School and CF

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!

Tuesday, November 24, 2009

Verify

PYSB732NNPV7

Sunday, November 15, 2009

CF and Pregnancy

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!

NO GENETICS! and CLINICAL TRIALS!

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.

Mad at Video Blogs

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.

Friday, November 13, 2009

The Final Inspection (A poem for our Soldiers)

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.

Thursday, November 12, 2009

Tests and Therapy in the form of Blogging

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.

Wednesday, November 11, 2009

Followers

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.

Saturday, November 7, 2009

Naythan Update from His Hospital Stay

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.

video

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.

Monday, October 12, 2009

NAYTHAN AND THE DOC!

After much fighting and arguing with doctors. We had gone to Michigan State University ER yesterday, got a diagnoses of Pnuemonia. Told me to follow up with my Peds doctor today and that's exactly what we did.

Went to see the PEDS doc today and just came home. She finally got through to Children's Hospital, and our Doctor who said he just had Asthma. He still didn't believe her, but said if it'll make you happy we'll find him a bed by the end of the week and get him on some IV antibiotics. Before she could even get back into the room to tell me, the nurse was calling me to tell me that they'll have a bed for him tomorrow morning! Finally something is getting done. I feel horrible having to play this stupid game of pitting doctors against each other, but I needed to get this done for his own health and safety.

His Peditrican believes that he if doesn't have Psuedomonus, he's got an oral antibiotic resistant bacteria growing in his sinuses. I hate to put him on these, but nothing else is working. She's afraid if we wait too long it'll be too late. That's what I think too. I'm glad to have a doctor that I love somewhere in his care.

Sunday, October 11, 2009

Update on Horrible CF Care

After much helpful advice from all of you wonderful parents, I did what my heart led me to do. I drove 2 hours one way to another ER. I was so worried when the "asthma" meds he was put on only made his cough worse. He was still running fevers. I ended up at Sparrow Hospital in Lansing Michigan. I drove the 2 hours there and people were wondering why. After all the background information and talking with some very good doctors (who didn't even work for pulmonary) we found out what is really kicking my poor child's butt. He has a freaking...get this...PNEUMONIA!!!!!!!!!!!!!!!!

We're on Zpak now and will be for 5 days. We'll see if this gets rid of it. If it doesn't, we'll be on IV antibiotics. Which at this point is fine with me. I'm going to be calling the CF Center in Lansing in the morning and seeing if I can get into their clinic to see a doctor immediately. I don't mind the drive. I know how to get there now. I also will be doing, on the advice of a few people on the boards, reporting my son's old CF doctor to: Children's Hospital, Medicaid, Children's Special Healthcare, the BBB and most importantly the CF foundation. I'm done and I've had it. This man almost cost my son his life. I just found out I had a Great Aunt who has CF and died at the age of 22. I'm not losing my son early because of shotty care. It's not happening to me! Thank you all for your support. I'll let you know how the reporting goes tomorrow!
Dorothy

OUR HORRIBLE CF CARE

He's had a cough for about 8 weeks now. His nose started out pink on the inside and the doctors blew me off. Well 2 weeks later he ended up having a runny nose. They started him on Omnicef and the symptoms went away while on the antibiotic. Well, about a week after the antibiotic was done the symptoms and bad cough came back again. They started him on Bactrim for another 10 days. The symptoms went away again and he was good. Now about a week and a half after the Bactrim the symptoms are back, but he also is have fevers on and off, complaining of stomach pain, vomiting, headaches, but no ear aches. I ended up taking him to the ER at Children's Hospital of Michigan last night. They couldn't get any meds or food down him. He had started vomiting about 6pm last night. Nothing would stay in him. They ended up sending him home anyways and said go to clinic in the morning.

So, against my better judgment I went home and went to clinic this morning. My CF doc told us that oh the vomiting is the flu, don't worry about it. Then told me that the cough he's been having is because of asthma that he now has. Which doesn't make any sense to me considering his cough lasts all day and night. Doesn't come with just doing things. He has it all the time. Asthma doesn't make sense to me. I just took the meds and went home. At this point I'm over tired and ready to cry because I know this isn't the problem with my son. He says it's asthma because his chest x-ray is clear and that his THROAT culture is clear. They have never done a lung culture, a sputum culture, or a sinus culture at any point. Just swabbing the back of his throat.

Well, I took my other kids to the peds doc because they haven't been feeling well. I told her how I felt about what happened at clinic today, and she checked him over. She's dealt with him more than the CF doc has. She says that the asthma diganoses is wrong. I agree with her. She said his nasal passages are as red as a Sharps Needle box they have at the doc office. She thinks that they aren't culturing the right thing. She thinks he might have PA in his sinus' and that he does need IV antibiotics to combat the crap that is beating him up. So, she's going to put a call into the CF doc on Monday morning and get him to see things her way and hopefully get the right answer. She's angry that he would just say he has asthma from a clear X-ray and push more meds.

NOW: The CF clinic is down to one doctor. They lost the other doctor to another hospital. I think since this other doctor has left, and all the Pulmonary and CF Clinic patients are just on him that he isn't as good as he used to be. I think my level of care is going down. I don't have the faith in him that I used to. Has anyone else had this problem? What do you do? The next closest CF Clinic is about 45 mins away, but they told me that he doesn't have CF (which he's had positive sweat tests). The next closest is 2 hours away. I don't know what to do at this point.

Thanks for letting me rant.

Monday, August 24, 2009

New Day, New Stuff

My little boy became a big boy today. He learned how to swallow pills without having to open them. I'm so excited. With that being said, he's also getting sick. I'm so tired with all of this. I hope it just passes without having to get more meds.

Thursday, August 13, 2009

Know your Enemy Day!

Today is know your enemy day. Today we know Naythan's enemy and we can honestly say it's a fair fight. Naythan's enemy is Cystic Fibrosis and we have all the tools we need to fight a fair fight. He will survive a longer life than those in the past. He will be a happy healthy child.

I lack one tool to keep this going and make sure he lives a happy life. A good clinic. I'm so upset with the clinic we have now. They are what is considered a Re-active instead of a Pro-active clinic. A re-active clinic only does things when something happens. Like if he gets sick. I want a Pro-active clinic. A clinic who tries to do things to prevent him from getting sick, or at least jumps on it right away if it does happen. This leaves me in a bind. My clinic hasn't even tested him for his genetic mutations. I'm so angry I could spit venom. Well, today isn't my day to complain, it's my day to battle.

NAYTHAN'S ENEMY IS CYSTIC FIBROSIS...MINE IS A BAD CLINIC....WHAT IS YOURS?!

Tuesday, August 11, 2009

The "65 Roses" Story (Cystic Fibrosis)

I love this story and thought I would share it with all those who have yet to hear it! Enjoy...

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after she learned that her three little boys had cystic fibrosis. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down his mother's cheeks as she stammered, "Yes Richard, I am working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become the symbol of the Cystic Fibrosis Foundation.

Wednesday, August 5, 2009

CF Clinic Call in the A.M.

Only doing a quick message here to let you all know I'll be calling the clinic in the morning. Naythan hasn't been feeling really himself since Sunday at the big RailRoad picnic. So I'm going to call and see what we need too do. Probably get a culture done. I don't want a sick baby. I just don't want him to get too far gone before we catch it either. I'll let you know what clinic says in the morning.

Saturday, July 11, 2009

Overnight Trip

Well, our overnight trip was a success. He slept well for mama and papa. I got no phone calls in the middle of the night. They did give him all his medicines. Maybe now they are starting to see what I meant by it needs to be done. So far so good. Unfortunately, they were home by 10am. Oh, well. I had some alone time and it's time for our routines to get back together. I'm off to check meds for this morning.

Friday, July 10, 2009

Medicines

Today Naythan is doing most of his medicines very well. I'm tired and feeling sick. I need to keep up with the meds but he's so just active some days. He's going for an over night stay with the grandparents. I've fought tooth and nail for them to understand that his meds can't be an oops I forgot moment. He needs them when they are due. I'm sending a list of what needs to be given when. Hopefully they'll stick to it! I'll post pics of it later!

Monday, July 6, 2009

Find a CURE for CF

http://www.youtube.com/watch?v=nGAv2cam7oY

Watch this and you'll see what a lot of us deal with as parents or as children/adults and CF.

Sunday, July 5, 2009

Today's Proud Moment

Today's Proud Moment: After dinner tonight, Naythan got up from playing. He came over to me and said, "Mom it's time to do my car." I took out his nebulizer, put it together, and he did his breathing treatment. Showing off to everyone how good he does. He was so proud he did it all on his own. He takes breaks if he needs to. He turns it on, does the whole treatment and is amazing. After we were all done, he got right back up and went back to play. Just like he does it every day. He's getting so much older right before my eyes.

Saturday, July 4, 2009

Naythan's New Nebulizer

Naythan has a new nebulizer. I found out that they made ones in the shape of a car. I got a cool yellow one for him. They do make it in pink too! He's actually doing his Pulmozyne on his own now. He controls it all and does it on a regular basis. I'm so happy and I've attached pictures of what it looks like so you can all get a chance to see it, and maybe get one for your little CFer.












Naythan and the Doctor

Naythan went to the doctor on Thursday, we're having to redo his lead test. He tested a little high and they want to make sure it's correct before we figure out what's causing it. Other than that, we did a height and weight on him too. WE GAINED 2 WHOLE POUNDS! That's a big thing for him. He is now 39 lbs and 40 1/2 inches tall. He's only 4 inches shorter than Lita, his 6 yr old sister. We're doing amazing now! If only we can gain about another 6 lbs.

Tuesday, June 30, 2009

Step Forward for Naythan

Naythan has always had a hard time taking medications. We never thought we would get to the point we could get him to take his medications willingly. He now takes his Ultrase, ADEKs, Zantac and Scandishake willingly. He even tells me that he hasn't gotten them yet. We've made a chart to track when he gets them, so I know and his dad knows when he gets them, how much, and when. Our hardest problem has been his Nebulizer and The Vest. Today we're going to try getting him to take his Nebulizer for his Pulmozyne again. Then the next challenge will be The Vest. He's been scared to death of it. He hopefully will have the support of his sister and be able to do it!

Intro To Naythan

Naythan is my handsome little man. He's 4 now. He has Cystic Fibrosis. He has many daily battles that we overcome and he is stronger for them. Right now, his biggest battle is putting on weight. He's also working on doing all of his medications. Right now he has 5 different medications and 1 Chest Therapy. He takes Pulmozyne, which is an inhaled steroid once a day. He takes Ultrase, which are enzymes with all his food, which is 3 before each meal or snack at the moment. He takes ADEKs, these are vitamins that the he doesn't absorb the same way we do. He's on Zantac, this helps his enzymes to work better. He takes Scandishakes, which are a powder that is mixed with milk to create a shake of sorts that have over 600 calories for him. We've been fighting to get his weight up higher. He also does Chest Physical Therapy. This is done with a machine called The Vest. It helps to loosen the mucus in his lungs to help him breathe easier. He's about 37lbs now and needs to be at least 10lbs more at the moment.