Seth's Struggle

Some of you may know that Seth has been very sick and in the hospital. He has also had to have a feeding tube put in as his BMI had dropped to 8% and his lung function had dropped from 108% to 88%. The scariest part is that we would not have known any of this if we hadnt happened to have a ruitine check up that day. He had been a little sluggish and he's never been a great eater but we had no idea he was sick. In fact we felt like we had been hit by a bus when the doctor came in and said he needed to be admitted to start IV anitbiotics and needs surgery to have a feeding tube put in asap. Aside from him being diagnosed 3 1/2 yrs ago I had never felt so out of control and helpless. This is my son, my baby, my heart and as hard as I try there just seems to be nothing I can do to control what's happening and that is the most sickening feeling a mother can have.
But... with a lot of love and support from family, friends, co-workers and some flat out strangers we made it through. The IV's went smoothe as always and his PFT's went slowly back up to 106% mean while I spent every moment thinking about his feeding tube and how it was going to affect his life. I cried every time he slept because I didn't want him to see how scared I was. It was the biggest slap of reality I had ever had and I just wanted to take Seth and run, as if I could run away from CF. He actually WALKED into the O.R. holding the nurses hand talking to her about school. I just squatted in the hallway crying in part because I was sad and in part because I was proud. It was all over in under an hour and I thought the worst was behind us. I was wrong. I was told that he would be in slight discomfort for a couple of days. That was not true. He was in pain, he was crying and begging to go home. And my son, for those of you who know him, does not do that. They had to up his amount of morphine and he spent the next 24 hours in a drug induced sleep. Needless to say I was out of my mind and looking back i feel very sorry for those nurses who had to deal with me. I can handle a lot, but not my baby in pain. He's just to good a child to lay there in pain like that. The next day he woke up and was feeling better, he was sitting up and talking, playing video games. Our next big feat was having  him get up and walk, and what a feat it was. He didn't want to, he was very sore and unsure, but he did enough  to get us home. Anyway a week and a half has gone by and he is back to normal and has started back to school as of yesterday. He is stronger and more sure of his self then I could ever dream of being. He has no problem showing people or talking about it and he is convinced that his muscles are already bigger from it! We went on Tuesday to get the stitches removed and by their scales he has already gained 2 1/2 lbs! So I can only pray that the worst is really over this time and we will start seeing the benefits of his new "straw". Thanks so much for all your prayers please continuing to think him. ( I have some beautiful pics I will upload when I get a chance.)

My Big Hearted Boy

I am happy to announce, and hope I'm not jinxing us by doing so, that Seth's sinus infection seems to be clearing a little. For the past 12 nights he has slept through the night without the added help of a sleep aid. I was really worried that our trip to the mountains and him being out in the cold snow so much was going to make things worse but my worry seems to be for nothing. He has started back up in school as of Monday and has not been complaining to the teachers about headaches like he was just before winter break and his appetite seems to be picking up some. We go to the CF clinic on Tuesday and I am hoping that his numbers are still high!!
Also I wanted to share something with you that my angel baby did just before Christmas that made me so proud I thought my heart would explode. I was cleaning out their play room preparing for Santa's big drop off (an air hockey table and basketball game) when Seth asked me what I was doing with some of his things. I explained that I had to throw away the broken things to make room for all the great things he was going to get for Christmas because he was so special this year and that some of the other things that he just didn't mess with any more was going to go to another family who didn't have anything for their kids this year. He asked why they didn't have anything and I explained the money thing and he seemed okay with giving the stuff away. Then I see him go into his toy box (where the "good" toys were) and proceed to pick out 5 additional toys, he asked me where the wrapping paper and tape was and for my help wrapping these things up for those children. And together we sat and wrapped these toys, some of which Seth still played with, and then loaded them into the car. Keep in mind the night before he was up sick and coughing until he threw up 6 times from 3-6am. I was scrubbing the mattress and Kevin had him in the tub hoping he could be soothed into falling back asleep. It is really true what they say about children with special needs, God really does make up in heart what they were shortened in health. Thank you God for my sons amazing heart.

What a great Christmas Break!!!

We had the best time at the ski resort! The kids were perfect and so brave trying new things, although Seth says skiing is "a little tricky" he did really well. We also tubed , made home made sleds to go down the side of the mountain, went to the in-door water park and went to the arcade!

Cystic Fibrosis Foundation - Home

Cystic Fibrosis Foundation - Home

Cystic Fibrosis Foundation - Home

Cystic Fibrosis Foundation - Home

Golden Corral Fundraiser

Our Golden Corral Fundraiser is officailly underway. Here is a picture of Seth by the tree. I like for him to come and be apart of it so he can understand the hard work and importance of it. I also take the chance to talk to him about the fact that people give money to us so we can give it to the doctor to make his lungs better.

On another note Seth has been out of school since I got the phone call Tuesday afternoon that his head was hurting and he was laying it on the table not wanting to participate after P.E. I am hoping he will be able to go for atleast a little while tomorrow so he doesn't fall behind.

Tis the season

I took the boys to see Santa at wal-mart and then there he was again at the mall (how do explain that?)

Anyway Seth had an appointment with the ENT on Friday, the Dr was actually able to see puss up his nose from the infection. He also said something that I has not thought about before but probably should have, that the bacteria that grows in the mucus in his lungs is probably growing in the mucus in his sinus'. So we started an anitbiotic nasal wash and another antibiotic nasal spray along with a oral one that he is going  to call in for me today because he is not  getting any better. It is very fustrating as parents for Kevin and I to watch him suffer, working so hard to cough up mucus that just won't clear and especially at night when he is so tired he does these really weak coughs because he is just so worn out from doing it all day and all night. The other night he coughed so hard he gagged on the thick mucus and threw up twice. And the past week it has been so bad I'm having to give him night time meds just to get him to sleep, the down side to that is he is so sluggish in the morning and keeps laying his head on his desk at school. We leave for our ski trip in two weeks and I would really hate it if he was sick the whole time, plus I'm worried about the pressure from the elevation change.  Does anyone have any advise on how to treat a severe sinus infection??

A New and Easy Fundraiser

Our local Golden Corral is allowing us to put up a Christmas tree and sell CF ginger bread ornaments for donation. I hope to have the tree up by this weekend so please spread the word so we can start our 2010 fundraising a little early this year!
Also we are taking Seth in to see ENT on Friday afternoon to see if we can do anything more for this sinus infection. He's had it for about three months now and he is so tough he rarely complains about anything but has been saying recently that his head hurts and I'm positive it's from the sinus pressure. So keep yor fingers crossed that Dr. Han will have some magic up his sleeve!!