"How are you doing, you seem a little distant..."

Recently, on a trip home, I had a sweet friend asked me how I was doing alright. She said I seemed a little quieter than normal. And since she noticed and asked I thought that there might be others who were wondering the same thing,  so I'm going to try and explain it for everyone

I can't speak for anyone else, but for me this separation from my family is extremely stressful.  Most people understand that on some level and can imagine that it would be but everyone deals with stress differently. And for me, immersing myself in two lives is not something that is helpful. What is helpful is stepping away from my old used-to-be-normal and immersing myself in my new normal. Don't get me wrong, I still check in with the kids teachers and FaceTime with Mitch and the kids every night. I talk to Mitchell and make sure that they are taking care of, feeling well and doing good in school, but what I do not do is try and stay current with everything else.  I don't make sure that Mitchell has dog food for Tama, I don't make sure that the cars are clean. I do not care if the house is clean or not, because I've already cleaned a house this week, this house. I do remind Mitchell of appointments and special events, but if he doesn't make them that's not on me. I've already got enough appointments to keep track of here.

Wow I'm extremely thankful to be close enough that I can come home on the weekend and see the kids and see Mitchell, but it's honestly more stressful than not. It is a 15 hour round-trip on two separate days, with me trying to jam pack as many people, events, games, books, songs, snuggles and hugs and has I possibly can. It's not that I don't want to stop and chat with each sweet friend that stops me, but I've only got two days.  And my sweet children do not understand the time constraints or what they mean.  All that they know is that mommy wasn't here for several days or weeks and now she is and they know that mommy has to leave again and they know that they want to spend every second with me. And while I am strong because the Lord has made me that way and I am confident in the knowledge that he has put us in this place for this time to do this thing and I am exactly where I'm supposed to be, in Durham, with mom, it doesn't mean that my children don't miss me, and it doesn't mean that I don't miss them. So please forgive me if when you stop me I don't stop and spend half an hour catching up. It's not that I don't care anymore. I do. I hope you're doing well, I hope your kids are doing great, I hope the job is going well and your marriage is working great, but right now I have enough on my plate,  and unfortunately there just aren't enough hours in the day. 

I'm so very thankful for all of my friends at home, and can't wait for the day when my old normal is my only normal once again.  Please keep praying for me, please keep loving on my babies, and being encouraging to my husband. Please keep sending me text messages, verses and other encouraging words, I appreciate them and all of you! 

Brookelynne's 4 year well check!

Today is my last day home this trip, and we are going to make it a good one, starting the day with Brookelynne's four year well check up! With everything going on, I have rescheduled this appointment three times now, just rescheduling it again yesterday so that I could be the one to take her. We talked about it all the way to the doctors office, "we are getting a check up", "we're going to have them check your eyes, check your ears and find out how much you've grown!", "we might have to have a shot".  When we got there, she did so great!

This was a new adventure as it is her first "big girl check up". This year we got a blood pressure check, eye exam and hearing test. They measured her against a wall for her height and did her temperature under her tongue. 

I immediately asked how many shots she was having to get today, but they didn't know offhand.  I told Brookelynne at least two and signed up to get my own flu shot with her. As expected the physical exam went well, Brookelynne's arms, legs, nose, mouth, ears, eyes, reflexes and anything else, all looked great. That means it was time for shots and the doctor said Brookelynne had to have three.

A few minutes later after talking about it, Brooke and I waited as the nurse brought in all of our shots. We talked about how a shot does hurt but if you count to five, by the time you get there, it doesn't hurt anymore.  So I went first, got my shot, showing Brookelynne how I could count and they didn't hurt anymore. Next it was her turn, two shots in one arm and one shot in the other. So I held her hand and told her to look at me and we counted to five while she got the first two shots. No tears at all and we let out a big sigh when they were done. I switched sides with the nurse and told Brooke we had one more, at which point she got pretty upset.  Not crying, but she really thought she should already be done. So I held her tight and we counted to five as the nurse put her flu shot in her arm. I counted to 5, and after a deep breath, she was fine. No tears even after all three shots. Excited and proud? You better believe it!! I was so so proud of my big girl!!

We went and got a celebratory smoothie when we left and headed back to school. She was so grown up and I am so proud of my little girl. She's not a baby any more! 

My trip home for Halloween :)

This weekend I got to go home and spend a few days with my sweet children and husband and celebrate with them in this fun season.  While Halloween was never a big deal in my house growing up or in Mitchell's, we did always get to dress up as something fun ( not scary) and go trick or treating. While we don't do any of the other thing on Halloween, we do keep candy at the house and go around to our neighbors and collect candy from them. But this year there was just no way for me to be home on Halloween in time to trick-or-treat with the kids so I did some digging and rearranging and worked it out so I could come do Halloween early.

The kids school had a storybook character day on Friday and my little babies got to be Doc McStuffins and Jake from Jake and the Neverland Pirates.  And in case you're wondering yes, they were super super cute!!

I got home late Thursday night and they were excited to see me when they woke up Friday, we had a breakfast at home and got dressed in our costumes and headed to school.  I drop them in their classes and checked in at the desk then I spend the morning going back-and-forth between their rooms taking pictures of them with their friends and helping corral them into one from one place to another. They both did so well for parading around the school for the older kids and many parents and enjoyed the fall festival type activities they had back in their classroom. 

Here are some pictures from the fun day

A long list of requirements....

I really have no idea what comes to mind when people hear the sentence "She needs a double lung transplant". Mainly because I was too young to remember what I thought, if I even knew what it meant, the first time I heard it. Having my mom be a 'transplant recipient' has been just 'part of our life' for most of my life. But I'm pretty sure that very few of them have any realistic idea what all it entails...so I'm going to tell you.

Today, I'm going to give you the basic details of what a lung transplant means, requires, looks like, etc in someone's life. There are 3 'phases' of lung transplant: Pre, Surgery, and Post. 

Pre-Transplant is the phase from the time you are diagnosed with a terminal lung disease up until you actually get a transplant. It can last days, months or years, depending on the condition. Some people (like CF patients) may know for many years that they'll likely need a transplant 'some day' and will be seen by pulmonologists routinely to track their lung disease. Some people begin having shortness of breath and can take years to go down to the point of needing to pursue transplant. Others have sudden drop in lung function from their lung disease, and very suddenly need a transplant.

The pre-transplant phase involves applying to a transplant program, with the goal of being accepted for evaluation. Once accepted there are 5-10 days worth of testing they have to do. They basically check EVERY other part of your body to make sure that you can survive the surgery and tolerate the medications afterword. Heart caths, kidney function tests, multiple esophagus tests, blood tests, EKGs, liver function tests and multiple cancer screenings, just to name a few. Once those are done, and reviewed, they either accept or reject you from the program.

If accepted there are a dozen or so requirements to meet before being transplanted. The most insane of those is relocating to less than 30 minutes from the hospital that will be performing the surgery. Since most people don't live within 30 minutes of the 20 or so transplant centers in the country, many patients have to do that. (LIKE US!) The rest are just tedious, daily things. The first of which is Pulmonary Rehab. Pulmonary Rehab is 3 hours a day, including 20 minutes of walking, 20 minutes of biking, 20 minutes of weights and 45 minutes of floor exercises, 5-6 days a week. The second is 'education'. They have lectures, and classes daily or weekly to prepare you for the surgery, the hospital stay and life after transplant. The third is routine monitoring of your health with regular blood tests, and doctor visits. 

Life becomes about the getting to transplant. Its all consuming and enormous and seems like it will never end, but it does. This part ends, and life gets back to being 'life' instead of being 'pre-transplant phase'.

And the rest, I'll tell you about next time!

Another update!

We are starting our 5th week of this Pre-listing journey. So far the schedule this week includes 6 days of PR, which will be very exhausting for mom, and a swallow test on Thursday. (Nothing that could derail us, just a pre-surgery look to have on file for comparison after transplant).
We are so thankful for all of you who continue to pray for and encourage us!! We don't know what we would do without the great blessing of Good friends that The Lord has given us!
As of now, mom should finish her mandatory 23 days of PR on Nov 1st. And we hope to be listed the middle to end of next week. Her coordinator is anxious to get her listed and is going to push to get it done a couple days early, so please pray with us that, if that's the Lord's will, that He will work it out for us!

2 Weeks Down!

Mom is currently finishing up Pulmonary Rehab, so I'm going to take the opportunity to update you all!
To this point, mom has completed 9 days of pulmonary rehab, had 2 days of clinic (days in the hospital, with meetings with drs), 2 addition mornings of tests, and 3 mornings of lectures.
She has a colonoscopy Friday at 1, and they've decided to redo her heart catherization next week.

We are on pace to get to her 23 days of rehab done on October 31st. And her coordinator feels confident that she'll be listed immediately! Yay!
We have lectures every afternoon for the next 3 weeks, in addition to PR, and several morning appts in the hospital.
Mom is feeling tired, and occasionally discouraged, but we're doing great!
Thank you all for your continued prayer and support!