Day of appointments in the books!

We are done with dinner and processing all that came our way today. We all slept great last night, had a nice slow start to the day and Tim cooked us breakfast. Tim did a fun time lapse on our walk to appointments at Cincy Childrens that I shared on social media. We checked in and another photo from P's chart was a blast from the past. SO LITTLE and no teeth. LOL 

I want to explain why we are here. It's two fold. Preston needs his vocal cords checked and to make sure he isn't aspirating when he drinks and eats. He had been sick most of the winter with a cough we had never heard before that landed us at his pediatrician more times than I care to admit and eventually requiring heavy duty drugs used for CF patients. His Dr ended up talking to his airway team and everyone agreed we needed to come out here. We also noticed a huge difference in his lung capacity. He had to give up playing his instrument for this very reason. He couldn't move enough air through his airway to play it sufficiently. While he moved on to purcussion and loves it, it was heart breaking to see him cry tears of frustration telling us how much joy playing his instrument brought him. We were determined to get some answers on all fronts.

First up, good news. Preston passed his swallow study with flying colors. Next up was FEES and this gave us a good look at his vocal cords and some good information. We have noticed as Preston has grown, his voice does not carry well. He gets lost in a loud environment. The doctor asked for examples and we said restaurants are really hard and especially when he tries to order for himself. The waiter can barely hear him. Reid instantly piped up and said, "Also, it's hard to hear him in the cafeteria at lunch." It made me realize Reid has insight Tim and I would never have. He was so happy to give input and help. Preston agreed. I included a picture of his vocal cords. Sorry if it isn't pleasing. Its a very accurate picture of the Doctors findings. He saw 'scalloping' as a result of intubation (almost like scarring but different) and it can cause some of the vocal struggles (projecting etc) and didn't see any 'leaks' which is good. What does this mean? We will start voice therapy when we return home. I am on the hunt for someone great. Anybody have any recommendations or referrals?? Message me! Possible vocal cord surgery after he is done going through puberty. This was not even an option in my mind nor did I know about this kind of surgery. I have been so worried about another airway surgery that this took us back a bit. If we do the surgery too soon, the area could require surgery again after more growth occurs. They are adding a CT scan to our list of appointments and hope we can squeeze this in before we leave. Waiting to hear from radiology. 

Lastly, Preston had a PFT -pulmonary function test. It tells us how well his lungs work (inhale, exhale, force, duration, and capacity). Reid and I sat in the waiting room together for that test as only one parent could go back. Reid told me he feels bad for P and realizes how hard this can be. He was beyond patient. We met with his Pulmonogist after that for a clinic appt (he will be in the O.R. Thursday to join Preston's ENT for the scope procedure). It was nice to talk about our concerns and he will share the findings of the PFT with us then. We waited an hour and 30 min for the clinic appt which took 15 minutes. Again, the boys are troopers and we have had some great laughs while all being together in one tiny room throughout the day. 

We stopped by Graeters for a treat after a long day and now settling in to watch a movie in our room. We have a few things tomorrow but will be laying low in preparation for Thursday. Now that we have been here for 24 hours, the boys are keenly aware of others struggles and the conversations it is creating are beautiful, hard, and eye opening. I am proud of their empathy and understanding. 

I will keep the blog updated once I find out O.R. time for Thursday! I hope everyone is having a great start to their week. The weather here is beautiful. Soaking up the sunshine when we can and just grateful to all be together. I took a photo of my favorite staircase that leads to our room. Tim was sweet enough to jump in the photo. Those stairs have heard alot of my phone conversations over the past decade when I needed a place to just sit and talk solo. Wanted to capture that pic for memories. 

Preston and Reid heard every conversation that took place today. Preston had so many people surrounding him and poking and prodding him all day and he never complained once. We got to our first appt at 8:45a and got home at 4p. There was only one time today when vocal cord surgery was mentioned, I noticed Preston become unsure but when we left for our walk back home, he said "I think today went pretty well, do you guys think so too?" He is my inpiration! May we all have that outlook and attitude amidst the hard. 

Thank you to everyone who checked on us today and continue to lift us up! We feel it. 

 

Journey to Cincy

 We left Sunday. As we hopped on the highway, Tim said "I can't believe I am doing this drive again." I agreed. We are in this together thankfully. Tim has done this drive many times solo and I knew I needed to join him and be there for Preston and thankfully, Reid decided to come too! We arrived in Terra Haute, IN for the night. We had a great stay with swimming, hot tub, dinner at Texas Roadhouse and a delicious breakfast to send us on our way to Cincy today. We arrived with a stop to Graeters first of course. Their new flavor was like a personal WELCOME straight to my heart LOL I am glad we have this treat to always look forward to. We pulled up to the Ronald McDonald House and couldn't believe the renovations and size of this new home. WOW! It's stunning. The warm welcome is always appreciated. And yet, I had a lump in my throat. I saw the photo of how little Preston was the last time we stayed here at check-in today and it made me realize how much he has changed but also how much in our life has changed. We have already done a load of laundry and the boys have each built a lego set and we have our room all set up for the week. Tomorrow is a long day with 4 clinic appointments (FEES, Voice study, Pulmonary function test, and Pulmonology appt). I will update how those go once we find out. We will be there all morning and then be able to walk back to the RMH for lunch before heading back to the hospital for the afternoon appts. Just another perk of the RMH being right across the street from Childrens. Thursday is the biggest day with his O.R. procedure. We got the pre-op instructions today with a check in time for 12noon but no exact O.R. time yet. Stay tuned on that. We have friends wanting to set alarms to pray so I will be sure to let you all know. I am so hopeful for a simple fix which would honestly be miracle news......I don't know what that would look like but we need a solution to Preston's issues and a full airway surgery could also be that solution and I know what that entails and I can't even go there right now. So for now, Tim and I stay hopeful. I have never prayed so hard in my life. 

Lastly, out of 177 rooms, we were placed in the exact same room I stayed in when my dad and I brought P here for his 2nd airway surgery. Really took me back and I was filled with a cocktail of emotions. We ate dinner with families who are all here for the same reason....to get their child the care they need. Most are displaced too. There is peace to be found in that kind of solidarity and yet none of us wish to be here. Such a weird place to be and we have no choice to accept it and carry on. We ended the night with delivering the goodie bags and it filled all of us up knowing everyone would have something special in their mailbox. Just like when we first came here and experienced the same thing. Feels good to spread joy! Special thank you to my friend, Jamie Freedlund, for continuing to have an impact on me with that kind of mindset. I am really digging deep these days to spread and find joy in every step of this journey. 

I just want to take a minute and say what an incredible 'big' brother Reid is to P. He wasn't sure he was going to come with us. We left it totally up to him. He loves being at school and with his friends so much and he is my routine oriented kiddo. I wish everyone could see the role he is playing on this trip for P. He got out of the pool at the hotel and was all excited to show me his hair styled wet and I took a hard look at him and realized just how grown up he has become and what a strong rock he is for P. He is the child that always challenges me and can be hard headed but he has a soft spot most dont see and he really has been worried about Preston. Especially with all the issues Preston encountered this winter. Reid has been in the shadow many times the past 12 years and Tim and I fight for him any chance we get so he can be equally apart of this story. His role matters and we want him to know that. It was hard to realize this early on but with time and therapy, Tim and I are more aware of this than ever before. My love for him is a different protective kind of love than what I have for P. I believe all parents love their children in different ways. It's hard to describe. He has witnessed alot of hard things and I am so happy he came with us. He told me tonight, "I am so glad I came mom!" It's wonderful Reid will experience RMH with it being such an important and impactful place. 

Lastly, I will never stop saying THANK YOU to everyone who is loving us from afar and has lifted us up prior to leaving. Every text, call, IG message, fb message, gift, food, help with the goodie bags and venmos have added tremendous light to our path more than you know. We are grateful!!! 

I encourage anyone who wants to see how amazing this place is to download the app and take a virtual tour. It's crazy! 

"The best medicine for despair is service" - Gordon B. Hinkley

We did it!

 Today was a GREAT day! We have all 177 families covered with goodie bags. I have a few 'extra' things I am doing and I can't thank everyone enough who helped with this project! During a time where I would rather pull the covers over my head, it feels good to focus on spreading joy to others and it's possible with all the help we received. Pretty awesome!!! 

RMH family goodie bags UPDATE

Friends! I couldn't wait to share this update. In the last 48 hrs, I am pumped to share we have raised more money (and more is still coming) than we have ever raised at Christmas time for the KC RMH families. My heart could EXPLODE! There are 177 families at the Cincy home so we had our work cut out for us with this project and we are DOING IT! Not there yet but I am not stopping till we get all the families covered. Thank you to everyone who has helped and also shared about this! I just want each of you to know YOU ARE MAKING A DIFFERENCE. I still remember the day I came back to the house from a HARD day at the hopsital with P and I saw a goodie bag in my mailbox. It had a little note saying "we have been in your shoes and you are not alone on your journey." The products were a hand cream, lip balm and full hand pampering set and I teared up and never forgot it. Tim even used that lip balm till it was gone. Seems so small to package up a few pampering items and include a note but the solidarity it offers and impact is FOREVER. 

More to come as I continue to update from this blog. I want to be sure those off social media can follow along. Wanted to share for those who have reached out to me and shared they are praying on 4/15 for our road safety, we have decided we need to leave 4/14 instead of 4/15 for a myriad of reasons. 

Thank you friends for all you are doing to support and lift us up and also help spread JOY when we arrive! 

XOXOLorna

Time to spread JOY to families at Cincy's Ronald McDonald House - turning pain into purpose

First off, the support and love Tim and I have felt pour over us in the last 24 hours has been unreal. THANK YOU never feels adequate. We are so deeply touched.

Secondly, I am determined to find a way to spread JOY and turn our pain into purpose for this trip. It is not lost on me many families do not have anywhere near the circle of support we have. Some have next to nothing. We have witnessed this many times over with each stay we encounter. This idea came to me tonight and I can't let more time pass. We have decided to show up with goodie bags for each family mailbox when we arrive. Time to spread JOY in the midst of our crappy situation. WHO IS WITH ME? It's the largest RMH in the country. We need all the help we can get!!!

I plan to buy everything once we have money collected by 4/10. Message me for our address if you want to deliver things to us. We are driving and will make room to pack our SUV full!

Let's spread the JOY and show Cincy's RMH some KC love!!!!!!!

Facing reality.....life is unpredictable

Life is so unpredictable. Tim and I have sat on a medical update and recent news till I felt in my gut the time was right. Preston is now 12. So much of his story as he gets older is his to share on his own. The question of do I still publicly share or stay quiet has been a tough one to answer. I believe our circle of support has been the most steadfast prayer warriors I have ever witnessed any time we need support coming our way. When this memory popped up, it became apparent to me that today is the most appropriate time to open up and ask for prayers. With Preston's permission, I am sharing we are heading back to Cincinnati in a few weeks. It's been a worrisome winter with many health challenges we haven't been able to clear up. We know what the possibilities are and honestly, I can't imagine a 3rd full airway recontruction surgery for him. I am asking for prayers that Preston is spared this invasive surgery and something else can be done to fix his ongoing airway complications. Ignorance of 'what could be' was truly such bliss when he was a baby (1st airway surgery) and little boy (2nd airway surgery). Preston will see his airway team, pulmonologist, undergo tests, a bronchoscopy in the O.R. We are fearful for the answers we are eager to receive. Such a strange feeling. We will be gone the full week of 4/15 and covet any prayers you are able and willing to send up for us. It would mean the world. P will be in the O.R. on the afternoon of 4/18 (I will update this as we find out more details so we can have prayers that day while he is under). While the road to Cincinnati Childrens is one we have traveled many times, it is full of firsts for our family and especially for the boys this time around. Reid will experience seeing Preston wheeled away and also recovering. He will be with Tim and me as we consult with the doctors post op and hear their findings. He wants to be there for his brother and support him and I know this will be a core memory in his life. Preston will have Reid by his side for all of this. He feels so much comfort in that. Lastly, we received news of acceptance into the Ronald McDonald House for the whole week which is such a blessing. Our 'home away from home' continues to bless us! SO grateful!!!!! Reid will experience this magical and special place for the first time too and Preston can't wait to see all of the updates since its massive renovation. I will be sure and keep everyone up to speed and can't thank everyone enough for praying in advance. That is my motivation for being so vulnerable and sharing so much. I know prayer works!! I want nothing more than to come on here soon with great news!!!

March 27, 2019 Last time he will ever be in recovery @cincychildrens RELEASED FOR LIFE To God be the Glory!!!!

Results are IN- home bound baby!

Hi everyone! The past 24 hrs have been a whirlwind. We are 2 hrs and 45 min from HOME!!! My dad and I were on a mission last night to clean our room, pack up, pack the car and check out 1st thing this morning! We are making fantastic time! Dr Rutter said Prestons airway looks great. Healing perfectly and we don't need to return for a follow up scope for another 6 weeks! I just had a feeling things would look good but to hear it from the dr and then release us to go home was music to our ears!!! Whooo hooo! The boys will stay home with me till after spring break to avoid germs while P's graft in his airway continues to heal. I can't wait to soak up time with ALL of my boys!! I still can't believe the blessings that continue to flow from this trip. God hears prayers and Preston's were answered! Thank you for all of the support from our family and friends near and far! You sustain us on this journey!

These are the pictures of our homecoming:

Our awesome neighbors, the Maguires, made this sign for Preston. It was great!!!!

We raced to be home by 4pm so I could go with Tim and Reid to my sister's house. She needed help with Will and Ava that night and since we didn't plan on being home this soon, Tim still was planning on going over to babysit and let Reid play with his cousins. I was so excited I got to go too! I have never showered so fast once we pulled up so we could ride all together and be with family. It was the perfect homecoming and by the look of Reid on my shoulder, I think its safe to say I was missed. So thankful to be home with BOTH my precious boys and the rest of my family. 

Tomorrow we head back to the O.R.

Happy Sunday everyone! Tomorrow we head back to Children's for Preston to go back to the O.R. for another follow up scope. We have to arrive by 1pm and his time is set for 2:23pm. I will post as soon as we get results! I am believing this will be the best scope of his life and his healing is 100%! :) 

We are asking for a few specific prayers:
*His time doesn't get pushed back tomorrow (its a long morning of no food or drink). 
*Dr Rutter has no issues scoping him and his airway and graft are continuing to heal and looks great
*We get news to come home sooner than we originally planned 
*Tim and Reid's week gets off to a great start....specifically no tears for Reid in the morning.
THANK YOU EVERYONE!!!!! I will post tomorrow as soon as we get results from the scope. 

This week has flown by and stood still at the same time. We have kept busy. We have been fortunate to receive more free zoo passes, free childrens museum tickets and the weather was nice enough to allow us to explore 2 nice shopping areas to help the days pass. Facetimed friends and family a bunch!  We had rain and light snow/ice drizzle the past 2 days so we made sure to have legos to build while trapped inside. Here are some pics to recap this week: 

Reid had a great #fridayfunday at the Williams. 

Got to have his BFF Zayne from school over for a daddy/son play date and lunch. 

Rebecca and Preston
P reconnected with a friend here! P's pediatrician Dr Lewis back home also see's this sweet girl, Rebecca, and she happens to come to Cincy Childrens for care too. We ran into them at dinner at the RMH one evening. We met her and her mom at the Childrens Miracle Network radiathon a few months ago in KC. What are the chances we would run into them? She received good news that day at the hospital so my dad went to Graeters and picked up her fav flavor ice cream for a celebratory ice cream party. She was ecstatic! Preston was SO excited she asked to sit next to him at dinner. Precious! *side note: someone is eating more than ever before (i believe its because he can finally breath better than ever) and look at his little tummy! This is HUGE with years of trying to get weight on him!)

Thank you Santees for helping our room look so bright and cheerful!  

This is 1/4 of the mail Mr P has received. THANK YOU everyone for making him feel loved and thought of! The best were handwritten cards and notes from his little friends. So precious!!!

Therapy dog visits were a big hit!

Suicide cereal. Gross! He ate the whole bowl with whole milk. 

Another morning with a full bowl of cereal he gobbled up.  

My dad LOVED the brunch Saturday morning and is he just the cutest or what? Thankful for this man and the memories we are creating on this journey together! 

Off to the children museum

Spending time with new friends we had never met before!
(Our awesome neighbors, Tim and Chelsea, reached out to Tim's cousin, Chris and his precious wife Mischa, who live here and told them about us and they generously reached out to us and even payed us a visit and showered us with gift cards and gifts for Preston). Makes me emotional writing this b/c when you are miles from home and complete strangers go out of their way to bless you, its really humbling. I am not sure how we deserve all of this support but God is watching over us with special friends who are lifting our spirits and we are SO appreciative! I could write a whole post on my new friend Priscilla (so mad i didn't get a picture with her when we met). Another shining example of people reaching out and being selfless to bless us. Did i say i am grateful? :)

Preston watching the rain fall from the kitchen

Grandpa bought P a lego set at the mall to build while the weather is yucky (its a sail boat which is fitting!) 

My BFF from middle school sent P a gift card for a special toy. He chose this lego set and its been a hit. 

Building the lego sets 

          Cant wait to share tomorrow's results from P's scope!!!
          Your prayers mean so much to us!!!! XOXO Lorna