Tuesday, February 28, 2017

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. 

Sunday, February 26, 2017

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

Monday, February 20, 2017

Results are in from scope! 1 specific prayer request

I will cut to the chase. Dr Rutter said P's airway looks incredible and 100% perfect! I am still wrapping my brain around this. I was overwhelmed and relieved at the same time as I thanked Dr Rutter for healing and fixing our son. More great news- We are being discharged TODAY from Complex Airway (i was told we would be inpatient 2 weeks- what a gift!). We are moving over to RMH with my dad this afternoon for the next week till P's 2nd follow up scope next Monday. We need a specific prayer for all of us especially Preston to stay HEALTHY so nothing compromises the graft in his airway. We have experienced illness with P after his 1st airway surgery as a baby and his graft being eaten by the virus. Not good. I wish i didn't have this floating in the back of my mind but I wouldn't be asking for such prayers for health if i didn't know the risks. I would be grateful for all prayers for health! Not sure when we get to come home yet but I am hopeful we won't be here 4-6 weeks like we were told (nurses said to pack for 12 weeks to play it safe but that is ruled out!). 

Until next Monday's scope, we will stay put and make the most of our time here this week. Today is a testiment to God's faithfulness even when we thought this journey was over a few years ago. His timing is far greater than ours. Doesn't make it easy but worth it with news we received today! More importantly, Tim and I feel the lessens learned by the continuation of his journey (and i am believing this to be the END!) have shaped all of us into better human beings with an even stronger faith! What a beautiful day! I will post adventures from this week. Here is a pic of Preston this morning waiting for transport while watching a show. He was so patient and brave. Thank you friends for being by our side and celebrating such relieving news! 

Until next Monday's results.....

Sunday, February 19, 2017

Recovery Day 6- Night before scope

I am so sorry for those of you who have asked me for our address at RMH. I keep meaning to post and forget. Very kind of so many to ask. We are here for the next week and taking it one week at a time. Preston keeps telling me how everyone has 'stuff' in their mailbox (even if its just the meal menu for the week at the house LOL) but ours is empty. LOL Well, we did just get here and he doesn't 'get it.' If anyone wants to just send a piece of paper that says HI Preston he would be thrilled LOL :) Something in our mail cubby would make his day. I am going to stick something in it tomorrow for him if he gets another 'day pass' this week. 
Ronald McDonald House 
Preston Walker Room #39 
350 Erkenbrecher Ave
Cincinnati, OH 45229 

Soaked up lots of time with P and my dad on our outing today. Day pass #2 was awesome! Still can't believe he had surgery 6 days ago and they let him leave from 9am till 6pm b/c of his resilience. Hit the zoo, game room and play room at RMH, nap, lunch and dinner at RMH before returning back to his hospital room. It was awesome! I am loving that we get to walk everywhere and P knows his limits when its time to hop in the stroller. We never need to drive anywhere. My dad and I have had so many laughs especially today and I love that we can give each other a hard time and joke around. Preston thinks its hilarious! 

Results from P's scope tomorrow morning will be in 1st thing once Dr Rutter chats with me after scoping him. He is set for 8am O.R. time. They will come get us around 6:30am to wheel him to pre op. I am hopeful for wonderful news! I will post as soon as I hear! Anxious to hear how much longer they want him inpatient and how much longer they want us to stay local till its 'safe' to go home. He has several weekly scopes scheduled. Please pray his airway is healing beautifully and looks great! Everything externally looks good (scars i mean) and his bounce back ability tells us nothing about how his airway looks so I am trusting its better than ever! 

Finished an awesome book tonight! MUST READ! Wanted to share! Picture is below.

I hope everyone has a great day tomorrow and I will be eager to post the results! Thank you again for ALL that you are doing to support us friends!!! Keep enjoying that gorgeous weather i see on fb posts! SO AWESOME!!!! Tell the sun to come our way:)

I have a pic of him on this turtle at 18 months old from our last big stay here and can't wait to compare them. 

A boy and his Grandpa

Brother wanted us to know its cool being in shorts and a short sleeve shirt in Feb! Glad he is having a great weekend!

Nap time at RMH

These 2 are like soul mates. Flipped thru the entire sail magazine together talking about plans to sail this summer on Grandpa's boat. Pretty cute! I fell asleep on the other bed.....sail magazines are snooze fest for this girl. :)

This book rocked my socks off and i can safely say I now feel like a Badass HAHAHAHA In all seriousness, it is a fantastic read!

Saturday, February 18, 2017

Recovery Day 5- conflicted, day pass adventures and 2 videos

I have to start out by saying how conflicted I feel about posting our super fun filled day. There are SO many kiddos here that won't ever get the day Preston had today. I see these kiddos in their rooms and I see so many being pushed up and down the halls with masks and they are truly fighting for their lives. Not to mention several that are on my prayer list that I can't stop thinking about (one being a special kiddo from KS who happens to be here in Cincy in the ICU and I just want to wrap that mama and her little guy up in my arms and give them all I have b/c I can't imagine their pain). I know everyone has a journey and I've been told not to compare (and I am not at all- just truly empathising). I feel especially fortunate after the day we experienced and then it was a wake up call when we returned back to the hospital the reality of everyone's struggles. Life isn't fair and none of these kiddos are families deserve to go thru any of this. Ive had a few 'lump in my throat' moments that i haven't shared on the blog. Makes me pray harder and more intentionally! That's all. I didn't take one second today for granted. 

All of these pics capture our day from Preston receiving a day pass out of the hospital with Dr Rutters approval. It was a nice break from reality. His rash on his face was horrible this morning so after a real bath in Grandpa's room at RMH we headed to CVS and got an ointment that is already working! Tomorrow we get another day pass! Whoooo hoo! We plan to head to the zoo or Children's Museum depending on what P feels like doing and what the weather is going to be like. We scored free tickets to both places thanks to guest services at Cincy Children's and RMH. So thankful! 

I want to give a shout out to my hubby! He is holding down the fort at home with Reid beautifully and wishes he could be here so very much! I know he is glad to be home for Reid but killing him not to be here too! His constant texts of encouragement and affirmation sustain me more than he knows! 

Breaking free 

Back with his old friend Ronny! We spent a ton of time at RMH today and Preston couldn't have been more excited. He acts like he owns the place!  
Some of the gifts Preston helped me shop for to donate to the toy room.  We brought several bags full so THANK YOU to everyone who donated!!! You are making a difference for sure! 

Preston filled every mail box he could reach with a Valentine gift from the donations at Xmas time! 

He was so excited! 

Very serious about this job. Not easily distracted to look at me :)

Teaching Grandpa the computer 

ALL DONE with his gifting! 

Big brunch! Bring on the calories! We have him eating every 2 hrs. I wish that was my diet! 

Game room arcades 

Killing it at Pac man

The weather was gorgeous and he was tuckered out by 1pm so i got to take him for a long walk. He passed out. 

Bath time before heading back to the hospital. 

Grandpa brought Graeters for an ice cream party and more cookies from yesterday were devoured. 

Playing in his bed with more activities and games gifted from friends and teachers before we left. 


Friday, February 17, 2017

Recovery Day 4

Busiest 24 hrs yet! 
My dad and I went over at 9pm last night once P fell asleep to check in to our room at RMH and get our parking pass. I still can’t believe we got the call this soon for an open room. My dad is staying there (its literally across the street from the hospital) and I am still with Preston in his room until he is discharged. Then I can transition both of us to the RMH with my dad. We got put on the waiting list Sunday for a long stay room. They recommend you call daily to check on the wait. Sunday they told me it was an 11 day wait. I forgot to call Monday b/c of P’s surgery. Tuesday it was a 6 day wait. Wednesday it was a 7 day wait. Then yesterday morning I called and they told me 8 days. I was so confused why it kept going up and not down. I started praying for the days to shorten. It was on my mind ALL day and I just kept saying little prayers. Totally forgot about it by around 6pm when P was eating dinner. Then I see my phone ring with a Cincy # at 8:30pm and I had no idea who it could be. When I answered I was shocked to hear it was a gal at the Ronald McDonald House b/c I had their # saved in my phone and forgot they have multiple lines they use. Everytime my phone rang, I was so hopeful it would say ‘RMH Cincy’ When she said they have a room and we could check in that night, I got chills. There is no explanation other than God provides! 

I am happy to report P slept from 9pm till 8am and hasn’t been in bed all day except for a solid 2 hr nap. Never turned on the tv. Finally playing with all his fun toys. A big WIN! He is walking on his own and gets to have a day pass tomorrow for 4-6 hrs out of the hospital. We plan to head over to RMH to play and possibly the zoo. He can’t wait. My dad and I are thrilled to get him out of his hospital room for an extended period of time!! We will get to deliver all of the gifts that were purchased from the drive I did at Christmas time. Plus a huge bag of toys and movies etc. THANK YOU to everyone who donated!!!  His neck and chest scars are healing well. We are battling a rash on his face and back and hope to get that cleared up. Our focus is taking in more liquids and calories. We are on the home stretch to healing and now we need good news on Monday from Dr Rutter once he scopes P’s airway (set for 8am in the O.R.) and tells us how its healing. I will take any prayers for great news on that matter! 

I was able to do several loads of laundry in the laundry room on this floor. I have a new appreciation for my washer and dryer at home. It took almost 3 1/2 hours to do 2 loads b/c the machines are not the best but i am thankful for clean clothes. So nice to have that service here! RMH has laundry rooms but since I am at the hospital full time with P, this is much more convenient. I was able to get a run in today and a long hot shower thanks to my dad keeping P entertained and playing with him! I feel so fortunate all is going well and I hope everyone enjoys the warm and sunny weather back home this weekend! Thank you again for all of your support! TGIF!!! PS- I could write an entire blog post on gifts we received prior to leaving and gifts that continue to come. I can't even wrap my brain around it all if I'm being honest. I don't know what to say b/c thank you seems so minimal. The meals that Tim is being showered with nightly and the love that surrounds us by constant texts etc checking on us mean SO very much. Nothing has gone unnoticed thats for sure! 

Started the day with P saying "Good Morning Cincinnati!" 

These 2 face timed for a long time over breakfast this morning and it was awesome to hear them be their silly selves with each other. We had ZERO pleads to go home today! Hallelujah! 

Out cold

2+ hour nap

Thank you Jureks for lighting up his day! 

Perfect way to boost his caloric intake

He was ALL about Grandpa this afternoon while i did laundry. 

Showing my dad and his nurses the 'Ms Abby yoga pose' with his Ninjas. 

Night time snuggles 

His neck is healing great- started ointment for the itching. 

They were able to use the same scar to access his rib for the cartilage used in his airway. Still amazes me how they can do this. 

Reid at the park with Daddy on their day off

Took a visit to Daddy's high school to visit a dear family friend  and show Reid dad's school. Go Bulldogs! 

Have a blast with all of daddy's childhood lego sets 
Have an AWESOME weekend friends!!!!!! XOXOLorna