No bad days with this crew 🌞

Clinic day!
This was a ‘short’ day for us this time, no extra tests, so it was only 2 hours. It’s called clinic day because we spend most of our day doing it. Clinic is a 45 min drive from home and then we spend at least 2 hours, usually 4, getting her check up. We do this every two months. This is in addition to her regular pediatrician check ups, and also her gastrointestinal check ups. She has a team of doctors and nurses just on clinic day. We see a physical therapist, pulmonologist, case worker, dietitian, respiratory therapist and her clinic workers/nurses. There are others she sees but just at her yearly clinic day. She has to be monitored closely for growth and lung infections. CF comes with a lot of doctors and nurses who literally become like family. #lifewithacfbaby #cysticfibrosisawareness #65roses

Excited to get our contact cards in the mail!! We'll be at #greatstrides Santa Monica on June 2nd handing them out. Hope to see you there!

Thank you Ajay and the team at @eziofficesupplies for donating the printing for the Pilates for Cystic Fibrosis Challenge! You’ll be seeing lots of red through our practice from Monday! 🎈 #cfq #65roses #cysticfibrosis #cysticfibrosisawareness #backinmotionbundall #backinmotionphysio #backinmotion #physio #pilates #massage #shockwave #orthotics #results4life #physiogoldcoast #goldcoastphysio #physiotherapyaustralia #goldcoastbusiness #wellness

Pilates for Cystic Fibrosis Challenge |🥤Try this- breathe through a straw, holding your nose and walk or run around. This is what it can feel like everyday for someone with Cystic Fibrosis with the condition affecting the lungs. A $100 donation provides a PEP device to help keep the airways from closing. #cfq #65roses #backinmotionbundall #backinmotionphysio #backinmotion #physio #pilates #massage #shockwave #orthotics #results4life #physiogoldcoast #goldcoastphysio #physiotherapyaustralia #goldcoastbusiness #wellness

IV ANTIBIOTICS: #cysticfibrosisawarenessmonth
So a lot of CF patients (especially as we get older) need more heavy duty antibiotics to fight our lung infections, or exacerbations as we call them in the CF world. Essentially the more exacerbations I have the “smarter” the bacteria in my lungs get. When I was young oral antibiotics like anyone else would get worked fine to treat the bacteria in my lungs. Unfortunately, the more exacerbations I have had have caused my bugs (bacteria) to become unphased by oral (pill) antibiotics.
The first sign of needing IVs for me is chest tightness, shortness of breath, my endurance during exercise going down, and of course a decrease in my lung function. Once it is determined I have an exacerbation we may try oral antibiotics, but 99% of the time they don’t work for me personally.
The next step after oral antibiotics is IV antibiotics. These are STRONG and can have some pretty crazy side affects, most of the time I am lucky to not get so my time on IVs usually is pretty uneventful. On top of my bugs getting smarter and not responding to oral antibiotics, they also don’t respond to certain IVs because they have developed a resistance. Unfortunately I am practically resistant to all IVs and have developed allergies to others over the years. This makes choosing a course of IVs, the time on IVs, and the whole process a little harder to predict.
Thankfully these days I only get IVs once or twice a year usually for 2 maybe 3 weeks, but every exacerbation is different. You can either do IVs at home or in the hospital. When I am at home I use these eclipse balls rather that a normal “IV bag”. They make life so simple because they dispense the medicine at the correct dose over the correct time because of the pressure in the ball. I can just hook up and continue my day. I am very lucky because I use to be on IVs every other month and even once for a month and a half straight. These are just things you can’t really plan and have to take them day by day, but it is yet another tool I have in my toolbox to help fight CF and keep these lungs as healthy as possible!!!

Erste Flasche im neuen Nomi ✔️
Fazit: genial! Er hat sich sofort darin sichtlich wohl gefühlt und super getrunken. Und ich hatte endlich beide Hände frei für seine Medikamente. Ich bin sehr zufrieden.
ABER, was ich bei dem Preis wirklich unmöglich finde: ein Sechskant Schlüssel und eine Schraube fehlten! Einen zweiten Sechskant hätten wir noch da gehabt, aber keine passende Schraube! Also wegen einer Schraube erneut 60km fahren fand ich wirklich mehr als 😡🤬🤮👊 und danach auch noch festgestellt dass beim Babyaufsatz erneut zwei Schrauben dabei sind, die, wäre das erste Paket komplett gewesen, gar nicht benötigt werden!!! Ich war bedient!
#nomi #nomihochstuhl #nomievomove #hochstuhl #henriandthegang #loewenbaby_henri #januarbaby2018 #endlesslove #13012018 #endlichbistduda #liebeimbauch #liebeuntermeinemherzen #love #family #winterbaby #ganzgrosseliebe #madewithlove #love #family #mukoviszidose #cysticfibrosis #65roses #cystischefibrose #deltaf508 #genmutation #meinkleinerxman #kleinerkämpfer

The one super annoying thing about CF is how quickly we lose sodium during exercise. Thank you @baseperformance for making a product that can adequately restore what I lose!! -
#salt #basesalt #cf #beatcf #cff #cfawareness #cfawarenessmonth #65roses #cysticfibrosis

Maicey has been wanting to have a lemonade stand to benefit the Chstic Fibrosis Foundation. This girl has a heart of GOLD!!! I am so proud of her. 💜💜
I am also so humbled that my parents are having a huge yard sale and the proceeds are going towards the Cystic Fibrosis Foundation. I love my family so much!! #cff #cfirl #cysticfibrosis #cfwarrior #cfawareness #65roses

This time last week, I was flying home to Va Beach to see these crazy nephews and the family. I didn’t make time to see many friends, as it was a short trip and my family comes first.

This is what makes me smile, and I miss these guys already. Friends, I’ll make more time for you on the next go round. Until then, love your family and cherish every moment.
Happy Saturday and Keep Smiling!

#CysticFibrosis #Awareness Month, Day 26: Magnesium Infusionnfusionfusionusionsioniononn
So being post-Tx, I'm on a lot of drugs. With the drugs, come a lot of side effects. At 9 weeks since my surgery, my body's adapted to most of them, but a couple linger.

The most frequent one I've had to deal with is that my magnesium levels still drop below ideal levels. Apparently. We're working on it. In the meantime, I'm gonna sit here with a needle and tube in my arm.

But don't get me wrong, I love having a valid excuse to sit around and play video games or browse the internet for a few hours 😆 Also, it's a good time to remember to mentally thank my #donor, and everyone else out there who makes that choice.
#65roses #justbreathe #invisibleillness #donatelife #transplant #lungtransplant #fightcf #curecf

Our 2018 @pucks4bucks uniforms and gamewear by @junkyardathletic . We've been participating in this tourney for the last 6 years, and look forward to it every year. #hockeyforacause #65roses #cysticfibrosisfoundation #addingtomorrows

6 month lungaversary weekend! And he still hasn't noticed I cut my hair...hehe. let's see how long it takes. #curecf #cysticfibrosisawareness #65roses #transplant #doublelungtransplant #weekendfun #celebrations

@sagaouterwear always coming through and hooking us up! We have several pieces of their awesome outerwear up for prizes! THANK YOU #SagaOuterwear 🙌🏽

Some photos from our first walk 😍

Thank you again to our friends and family that came and supported and raised awareness of CF! I know we are so close to getting a cure!
#cfawareness #greatstrides #cysticfibrosis #cysticfibrosisawareness #cff #fighter #advocate #live2breathe #breathe #breatheeasy #65roses #sixtyfiveroses #donate #walkforacure #family #friends #love #life #live #instagram #instaphoto #instagood #followme #likeme

It is crazy that these two pictures are taken exactly a week apart. Last Sunday I was in the Caribbean at the house I grew up at meeting with people to start fixing it up after the hurricanes last fall, and this week I am in Delaware in IV antibiotics.
I wanted to share this to really show how truly invisible CF can be. While in St. Thomas I was still getting over a cold I got a MONTH ago and was still not feeling right, but could you tell?? No. Almost all of my battles fought cannot be seen by others.
I know my body best, I know when I need a little extra help to get over something, and this was one of those times. So after our fun trip I bought a flight two days later to see my doctors in Johns Hopkins, flew from Atlanta to Baltimore, and went to clinic.
Thankfully I am not too far off from my normal lung function (only down 4%), but since I had already tried oral antibiotics, IV antibiotics were the most logical choice.
For me, I have learned that these lungs are something I do not want to play around with. If I have tried everything on my end (increase therapies at home, increase exercise, more airway clearance) I have 0 problem going on IVs. With all the advancements in CF medications these days I just need to keep AS MUCH of my lung function as I can, so I hold onto every % point for my literal life.
I was already coming home for my brothers graduation (wow I’m old) so why not just stay a little longer and make sure I am healthy??? To me it is a no brainer.
Going from drinking Coronas on a beach to waking up throughout the night for IV meds is sure of a difference from one week the next, but this is life. Life is unpredictable, but it is beautiful. I get to spend time with my family at home in Delaware and be happy with them and I love that. Remember it is always about perspective and releasing how you think life should be and just being able to happily sit with what life is. Be here. Be present. Remember if plan A does work out, there are 25 other letters left, I am just her embracing the positives of my plans B, C, and onward 😊 thank you for reading and catching up with me!!

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