Doctor appointments

We had to go to the doctor and get some chest X-rays done for Jace a few days ago. I feel so bad for Jace every time we go to the doctor because it's a lot of waiting, sitting, and new scary faces. Jace always handles it like a champion! The boy is amazing! We also went and saw a doctor to get a full check up on his development. He is doing well, but probably should be saying a few more words than he is. They checked his ears and it looks like there is fluid behind his ear drums. He has had 3 ear infections and I think that he has constant ear pain. He has been having the hardest time sleeping lately and I think it's his ears. So we are going to go see a specialist for that in a few weeks. Next week we have to go get some labs done and have a normal 3 hour CF appointment on Friday. He is growing up so much! It makes me happy, but sad to see him grow up! I just love my little baby!!

AZ fun! Treatment not fun!

We recently moved to AZ for Jared to go to Midwestern Podiatry School. We really enjoyed living in Utah, but are grateful to be back close to more family. Jace is so happy to be in AZ and have a pool!! We go swimming all the time and he loves it! He is a little fish! It has been hard feeling like a single mom sometimes, but I know it will be worth it. The hardest times for me are when I have to do his breathing treatments both times instead of just the morning. Jared usually does the night treatment, but when he has to study I get to do it and it sucks!! Jace sometimes fights the treatment the whole time and is getting stronger so he pushes, kicks, screams, etc for the breathing treatment part. It is overwhelming trying to hold down a little kid. I feel like I am the worst mom ever on days where I have to literally pin him down to do something that will be make him better. Tonight was one of those nights. He usually doesn't act like this, but tonight he did and it was hard. Tonight I hate CF. But I am grateful for the medicine that is helping him stay healthier longer! He has not had to get on any antibiotics since moving to AZ!!! YAY!!! Maybe the weather here will be better for him!!

Running

Having cystic fibrosis comes with many challenges. One of these challenges is that it can be hard to breath. I went on a run with Jace the other day and I hadn't been feeling the healthiest so near the end of my 2nd mile I started having a hard time breathing. I got a lot of mucus stuck in my throat and I kept coughing. I looked down at my little boy in the stroller and wanted to cry. I was having a difficult time for this short moment, but Jace will feel like this for his whole life. I got home and just held him as tight as I could because even though he won't know any different - I do. I know his life is going to consist of hospital visits, doctor appointments, medicines, hand sanitize, etc. I love him though and will do anything I can for him!

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.