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!!!