May

i haven't written a lot in a while because life got a little crazy and busy. Jared and I both graduated in the beginning on May and so April was crazy busy with school and work. Then as soon as we graduated Jace got sick. He first got the stomach flu for about a week and we ended up having to go to the hospital I the middle of the night to make sure he wasn't too dehydrated. It was a bad 4 days of no sleep. He only slept for small amounts of I held him. Then after he started getting better and he started eating a little more he got a double ear infection. That was horrible too. He got on antibiotics and we had to give him Tylenol every 4 hours to keep him happy. That lasted the whole 10 days while we were on antibiotics but as soon as they were done I took him into the doctor because I wasn't convinced he was better. It's because he wasn't. He still had the ear infection so we started the 2nd round of antibiotics. I guess I should add that we also have to increase CPT (pounding on his chest for 45 min) to 4x a day instead of the normal 2x. So the days become long and exhausting. So final we finished the second round of antibiotics when I took him in to the doctor and he said they looked clear! Hurray! I was so happy because we had this huge Yellowstone trip planned just a few days later do I didn't want him to be sick for it. So we went to Yellowstone and half way through the trip we get a call from his CF doctor saying he cultured a bad bug. I just about died because we weren't anywhere close to a pharmacy and I only got a message and nothing else because I was not in cell service range. So I was so stressed out and called the doctor about 8x before I got a hold of her and she told me he needed to get on another round of antibiotics!! This kid is 9 months old and has been on 5 different antibiotics. I am grateful for them but they screw up his appetite and his bowels. I really don't like antibiotics. So hopefully this round will kill the bug and Jace can start feeling better. Poor kid handles being sick so well!! I love him so much and wish I could take away his pain! 

8 months

Jace is 8 and 1/2 months old!!! I can't believe have fast time has flown by. Jace started crawling at 7 1/2 months and has perfected it by now. He can get from one room to the next so fast. He loves to be where ever his parents are so anytime we leave the room he follows. He has his 2 bottom teeth and his top teeth are starting to come in. Jace loves kids - he will sit and crawl around and watch when kids are near. He loves our cat - Bella. He will play with her all day everyday if I let him. She doesn't always play nice though :(. His first words were dadada and then he started saying mamama. Now he switches between the two. He hasn't really had a first word yet. He loves balls. Especially volleyballs!! He will play with those all day every day.
Jace has been sick for the whole month of May and it has been really really hard on me.
Cystic fibrosis has played a huge part in our lives, but I feel like it hasn't taken away everything.

vacations!

Tomorrow we are going to St. George for the weekend and even though I am excited I am a little overwhelmed. Just the things I have to pack for a baby is crazy.

• medication (enzymes, vitamins, prevacid, albuteral, pulmozyme, salt)
• nebulizer and neb cups 
• big pan that we have to boil our neb cup in every night to sanitize it.
• breast pump (because I still have to give Jace one bottle with formula in it for the extra calories)
• Formula
• timer and percussion instrument for CPT
• Baby food (especially applesauce because that's what we use to put his enzymes on)
• baby spoons
• burp clothes (because he spits up a ton and it's orange because of his medication)
• bottles
• bottle cleaner
• clothes
• diapers
• boppy
• toys
• blankets

Just so much added stuff with CF. I am grateful for all the extra stuff because it helps his lungs, but it can be a hassle to try and get everything packed and ready for a 2 day trip. Alright well I better stop writing and better get packing :)

CF sucks, but I need to be positive

I have been feeling depressed recently. I feel like when Jace first got his diagnosis I just pushed through the pain to do whatever it took to make sure Jace was getting all his medicines and making sure he was doing okay. Now he is 5 months old and I feel like his diagnosis has hit me with a ton of bricks. I didn't know how complicated CF is when we first got diagnosed. This disease is life-threatening and scary. Is my son going to die before me? possibly. That fact sucks and hurts so bad. My friend described it perfectly the other day. It felt like as soon as Jace got the diagnosis a timer started and it keeps clicking in my ear reminding me of the time I have left and that I need to make the time meaningful and wonderful. I know I need to stop thinking about it though and start thinking about positive things that are going on with CF. Like I get to wake up every morning and be grateful I get another day with my son!

Yesterday I took Jace to the doctor because he kept pulling on his ear and he hasn't been sleeping well. The doctor said that everything looked fine, but I am just so scared because everyone keeps telling me that as soon as he gets a little sick I have to put him on antibiotics to make sure he doesn't get sicker because it can go from bad to worse in a split second. I don't want my son to have to go to the hospital. The first time we are there I know I am going to have a super hard time! I am trying to avoid the hospital for as long as I can!

Jace is such a sweet and special boy full of love and happiness. I hate that he has to go through this, but I will do whatever I can for him to make it less hellish.

Sleeping

Jace has slept through the night since 5 weeks old! We have been so blessed with such a good baby! Lately though he decided to go to sleep later and later. We tried to let him cry in his crib in 5 min increments with me going in to calm him down in his crib. He did really well with that, but I didn't. I have the hardest time letting Jace cry. He is the best baby ever and to hear him cry makes me cry.
This is hard that I can't hear him cry, because sometimes I have to let him cry so that I can do his treatment. It is the hardest thing ever! I hate that I have to let Jace cry sometimes for his own good. Why does it break my heart so much?  I just want him to love his treatments, but I know that's almost impossible. The only way I will do his therapies now is if he is asleep in my arms. I hate that I have to do this to him, but know it's for his best. I love him so much and hope his life gets easier. I hate that he has to have cystic fibrosis and I would do anything to take it away from him!!!

life sentence

When we first got the diagnosis of cystic fibrosis I felt like my son was getting a life sentence. I still sometimes have these moments and they hurt. I would do anything to take away his pain, his struggles, his tears! As a parent it is the hardest thing to watch your child suffer. I know this is just the start of that suffering for him, but I will be there for him the whole time!!!
Jace is gaining weight and looks like a super healthy, happy 5 month old. You would never look at him and see cystic fibrosis. That is a good thing and a bad thing. I love my son more than anything and will continue to give him all the medication the doctors tell me to.
I don't want this to be a life sentence and so I will do everything in my power to give him a long life!! I do get depressed sometimes though when I read or hear stories of other children dying before age 25. It makes me so sad! I am scared for the future, but it is looking bright with recent medications to help make his life longer. I will continue to update this blog on our life as we face these trials.
I want people to understand cystic fibrosis because knowledge is power. I still learn new things everyday about this complex disorder.
Jace is my hero and I feel like he is going to be just fine, but the fear of loosing him is scary.

Many doctors

After our first appointment we learned that we had to go back up to Primary Children's at least once a month for a routine check up. We also needed to continue to go to our primary pediatrician to make sure he was getting his vaccines and hitting all of his milestones. I'm pretty sure we have been to the doctors office over 15 times and my son is only 5 months.

We also go to the pharmacy multiple times a month. We do Chest physical therapy 2 times a day and pulmozyme 1 time a day. These past 5 months have been hard. These few pictures just show a small amount of what we go through in a day. It is not easy, but it is worth it for him to have healthy strong lungs. I don't get out of the house much because I don't want Jace to get sick. It is really hard to go to church and see other cute babies out of the house, but I know it's for his safety.