The results are in!

I am still processing what the dr shared with me today. After all of the time, money, and planning spent to seek care out of state for P, today confirmed every bit has been MORE THAN WORTH IT. Dr Rutter is absolutely the best in my opinion! He is a strategist and always makes sure i understand everything before moving on to the next step. I appreciate that especially when I have to re-explain it to Tim. :) I am not sure if I should be jumping for joy or scared that I am getting our hopes up. Faith and fear can't live in the same place so I need to stop worrying. We received exciting news. I will cut to the chase. We have a plan A and a plan B. Maybe a plan C. I will be here till at least Sept 11th. 

Plan A
Preston has a new trach in- its called a Tracho 3.0 (its smaller so he has more room to let air around and breathe). Its also fenestrated…so it has a hole drilled in it. He is breathing totally different now. I hear air moving from in and out of his mouth a ton. Good news with that! We are settled in his room for the night to let his airway heal after the scope today b/c they removed skin that was around his trach (not granulation tissue……this skin they removed actually helped to open up his airway even more and won't grow back). The pulmonologist said he looks good too! 
*Dr Rutter wants to cap him starting tomorrow for 2 night to see how he tolerates it. If he does great, they will take his trach out the next day for good. We will stay overnight for observation the following 2 nights post decannulation. Then we will stay in town till Sept 10th for another scope to see how his airway looks. Yes, you are reading this correctly. Trach could be out by this weekend.

Plan B
Tomorrow is the true test…..if he does not tolerate the capping well, then Dr Rutter wants to go back to the drawing board with a Plan B. He is keeping him on the operating schedule for Sept 10th incase his capping trial is not a success to go thru with the single stage LTR surgery or see what else may need to be done. 

So, I sit here with another night of waiting! The unknown is KILLING me. I am not thrilled to be here for the next week but I am prepared. It is EXHAUSTING being on my own. I miss Tim terribly.  Preston does not want anything to do with anyone. Going to the bathroom takes convincing. LOL I know he is scared and tonight has not been feeling well. He was doing awesome today until I had to put his gown on in pre-op and big alligator tears streamed down his face. My heart broke- he knew what was coming. Thankfully I don't have to pass him on to a nurse to be put under. I get to go back to the O.R. and sit and hold him while they give him meds to go to sleep. 

I will let you know how the capping goes tomorrow. Not sure what time that will take place. I pray he tolerates it. I can't even fathom going home with a trach free little boy- my mind is racing with all of the possibilities. For Dr Rutter to be willing to decannulate this weekend means his airway looks strong enough and good enough to even THINK this. AMAZING!!!!!! I am sorry if this sounds cheesy but I looked at Preston as he laid on the operating table before they wheeled him in for his scope and can honestly say I found my true hero in my son today. 

New banners up at RMH- i love this place!

Loaded and ready for the hospital 

Playing in the playroom with Mickey ears this morning! 

Brother went to Barnes & Noble with Grandpa Walker for Story time and legos!

Recovery

Finally feeling better getting his tummy full 

Getting used to his smaller trach has been tiring. He hasn't let me leave his side. 

I think he was hungry…..had a grilled cheese, pb&j sandwich, and pizza! Much better mood after that! 

PS- We have our favorite CMH RT for the night- Dan the Respiratory man LOL This guy cracks me up and he is a huge educator in the respiratory field. He was walking me thru the steps for tomorrows capping trial. He got me excited! Such a positive and uplifting guy. He has seen thousands of kiddos decannulated so he had lots to share with me. We also have our wonderful nurse, Aaron, who we have had before. He is so compassionate and I just can't say enough about the Complex Airway floor here! They are the BEST! Feels like home and they were excited to see us back. Lots of other nurses popped in to say hi and see how Mr P has been doing. We are also back in Room 512 like last summer when we lived here. I feel as if this is all full circle and it feels GREAT! Here's hoping to a SUCCESSFUL day tomorrow! 

We are here…..change of plans already!

 Travel today was great! Its always exhausting to get up at 4am to leave by 5am but no delays and no lost luggage- we are good to go! Preston did great flying- slept on 1st leg of our trip and watched Frozen on the 2nd leg and then slept the entire run I was able to get in once we arrived at RMH. We have one of the new 'short stay' rooms and its really nice. I am sitting here while Preston is still sound asleep in the stroller and i was able to shower and get in sweats before we have dinner and play here all evening. I even found a Starbucks at the airport to complete our day of travel. Great day!!! Thank you to my friends who sent me messages with well wishes. The video of Reid praying for his 'brudder' was the highlight of my day! 

We have a change of plans! I got a call from 'same day surgery' while on my walk and Preston got moved up on the schedule. His new O.R. time is 1:15pm instead of 4pm. HIP HIP HOORAY! We check in at 11:15am so this means he won't be going ALL day without food! I am one happy mama. Always another day to visit the zoo. That was just my plan to distract him. We will go for a run together in the morning during breakfast time instead and then watch a movie before heading to the hospital. This also means we won't have to be checking into our room on the complex airway floor late in the evening. I only have to wait on pins and needles for 1/2 a day to hear what new Dr Rutter has for us  instead of the entire day. I AM SMILING EAR TO EAR!!!!

Here are the pics from our day. I will be updating the blog tomorrow night with the plan of action for Mr. P! 

Catching our connecting flight out of Charlotte, NC

A boy and his plane 

This child thinks he is Buzz Lightyear. When we got ready to land during both flights, he put his fists out and signed Buzz the whole time. I thought he was going to give himself a heart attack he was so intense about it. LOL 

Changed clothes (i am a freak about germs and airports) and off we went running….he was out in 2 minutes. 

GAME FACE ready!

 No matter the news tomorrow, i have one HAPPY boy and thats all that matters! :)

Cincy bound tomorrow……let's do this!

I am all packed, I have my head in the game finally (i have been in a bit of denial….okay, a lot of denial but thats over) and Mr. P is ready to rock n roll on another plane ride tomorrow! He is ready and HEALTHY (thanks to breathing treatments around the clock and kicking whatever started to flair him up on Thursday). Of course, he has no idea what is around the corner for him. I hate that part. Reid has been a hand full lately. Lots of time outs and asking me 'whats wrong mommy?'- I have a feeling he senses what is about to happen. Not on a large scale but on a small scale I think he senses a change coming. Thankfully, I have a FUN week lined up for him and having daddy home at night after practice or games will be wonderful. 

Tim is going to gain about 10lbs while I am gone with all of the wonderful meals delivered to him this weekend from friends and family. This does not help make me look like a great wife in the meal dept. ;) All joking aside, we are BEYOND thankful for this support and help! I have been consumed with trying to pack for an unknown period of time. How does that work, you ask? Good question. I am packed for a 10 day stay. If i am there longer b/c we find out the single stage surgery is a must, then Tim will drive our van out here loaded to the gild for the surgery and fly home once we are re-settled post surgery. That is our plan B. We went on a date night Saturday to dig ourselves out of denial a little bit and come up with a plan B. We don't want to be blindsided. My mom will fly out to be with me the rest of our stay if I am in Cincy awhile. Thank GOD for my wonderful mom! I would be lost without my folks! 

I feel like a broken record when people ask what this trip is for and I am hate boring people with details but it feels good to have friends/family care and ask. I can barely keep up with the details so i can't imagine everyone else remembering each trip and the course of action that will take place. I apologize if i am repeating myself again **Skip if you are bored LOL** Preston and I will arrive in Cincy tomorrow around 1pm. We will check into the RMH house and get settled. I plan to take him on a long walk by the hospital and a park to get fresh air. Not sure how nap time will work out tomorrow so this can be his 'chill time' and then we will eat dinner at RMH. I am hoping to see some of our friends who are currently there till the end of the year (yes, the end of the year- we are SO grateful to be able to come back home after each trip). His O.R. time isn't till 4pm on Wednesday (poor guy has to be NPO all day :( and we need to arrive by 2pm at the hospital at pre-op. So we are heading to the ZOO all morning. Its right down the street from RMHouse and will be a great distraction from not being able to eat all day. Once we get to the hospital on Wednesday, Preston will be inpatient the ENTIRE time we are there. Not looking forward to that. So as much fresh air that we can get the better! 

Preston's scope on Wednesday will tell us the next plan of action. He will either be a guinea pig for the following few days with trying to downsize his trach and drill a hole in (called a fenestrated trach) and keep him hooked up to monitors to see how his O2 sats are and if all goes well, we will go home with orders for capping trials and wean him off the use of his trach for the following 4-5 months. Then once he is capped daily and nightly, he will get it out. OR he will be having the single stage LTR on Sept 10th and Dr Rutter will take rib cartilage to build a new graft to repair his airway 100%, trach comes out for good, intubation tube stays in for a week (he will be sedated for that period of time as to not move or jerk the tube in any way causing the graft to be displaced). Then we have to stay put in Cincy for 4-6 weeks with a weekly scope to see how he is healing. Both scenarios have major perks and drawbacks. I can't decide which one is what I should be praying for. So my prayer has been whatever is BEST for PRESTON, least amount of pain, and most successful long-term future for him and his airway! For the first time ever, I can visualize what my little man's neck is going to look like naked. When that will be is up to his little body and Gods plan! 

I will be updating the blog nightly (the best therapy ever and to keep everyone informed). Our prayer warrior friends and family have kept me feeling at peace over this trip and the outcome. Leaving Reid behind and missing Tim nightly is what tugs at my heart the most. I just HATE leaving my Reidy Roo for more than a few nights here and there. I will miss being with Jessica each day and taking the boys to the park in the morning or going to story time together. Those things will be waiting for us when we get home…….trach free or a plan to be trach free SOON! 

Thank you for all of your well wishes, prayers, and word of encouragement! They mean so much to us!

The countdown has begun!

Well friends, the countdown has officially begun! I returned home last night from a super fun trip in KY for mk and reality has sunk in 110%! We leave in 16 days for the scope that we have been waiting almost 3 years to the day for! Is Preston's airway ready to allow him to breathe on his own??? I have been so stressed out and emotional the past 2 weeks regarding this trip. Could not stop crying for several reasons. Then I woke up the other morning and sent a text to 2 girlfriends who I knew would pray for me. One of them reminded (after sharing how scared I was) that "God has not given us a spirit of fear, but of power, and of love and of a sound mind." 2 Tim 1:7 Then I read another devotion from Jesus Calling and had a 'clouds parted' experience. A huge wave of peace came over me and I realized that SPEAKING the words "well he might have to have the surgery but we aren't sure yet" was not what I needed to be verbalizing everytime someone asked what the trip involved or what was going to happen. So instead, we are speaking and believing the surgery is not going to be necessary and we will come home with the trach and capping trials will begin (a weaning process to get the trach out in months to follow). Yes, it sounds nuts that we would prefer him to come home with the trach but this surgery is REALLY REALLY rough and he would be sedated for a week and I want to spare his little body all of that if we can avoid it.  His breathing is amazing us everyday- we hear him taking breaths all on his own via mouth and he wears the speaking valve for periods at a time. The results are not in our hands so I am ready to see what God has in store for us. I am welcoming whatever the results are after the scope on Sept 2nd with OPEN ARMS. What other choice do I have? Continuing to be a bundle of nerves is not what God wants for us. Still doesn't mean I don't have moments of anxiety, fear, worry, sadness etc but I am comforted knowing we have not been left behind thus far so we are in great hands and what is meant to be will happen. I think some of my concerns revolve around being alone on this trip. Tim is ALWAYS with me. That is a huge amount of support that I NEVER take forgranted anymore. The school year and coaching season are both off to a FANTASTIC start and I am so glad Tim will be here for Reid every night. Reid lately has been asking Tim to sing this song at bedtime that Tim sang in church camp growing up (sorry I just outed you Tim) and usually I am the one who Reid prefers at night to sing a song or tickle his back. Well I don't know this specific song (yet :)) so Tim is the one Reid wants when its time to go to sleep. This little transition is confirmation that Tim is suppose to be the one staying home with Reid so he can keep up this routine and comfort him at night. I have no doubt Reid will be longing for his brother and Ms Jess (and maybe me) sooner rather than later. 

I didn't realize until I looked at some old baby albums that we found out on Sept 7th 2012 when the boys were just 10 months old that Preston would have his trach till approx 3 years old. We processed the news and believed Preston would surprise us. Well, its safe to say he has surprised us MANY times but not for the one thing we hoped for. The trach is still in and not years later we are actually thankful. Sounds crazy again but this past year has been filled so many INCREDIBLE things and AMAZING relationships built and NEEDED PERSONAL GROWTH (for me mainly;)) all because he is not trach free.  

So I come to you tonight asking for prayers that our travels are safe on Sept 2nd and no complications arise while flying alone with Preston. We plan on settling in to the Ronald McDonald House that day. I will pack a travel bag and head to the hospital with Preston the next morning and he will be in the O.R. on Sept 3rd for a full scope of his airway. Not sure of the plan after that. I know we will be inpatient for at least 4-6 days (not looking forward to that one bit). The plan will all be based on what they see and how much more room his airway now has due to tonsils and adnoids OUT and everything is healed. 

I hope everyone had a fantastic summer and the school year is off to a wonderful start! Hard to believe our pool days have come to an end. My next update will be once we arrive in Cincy! Stay tuned...........

PICS FROM THE 2nd HALF OF SUMMER COMING SOON :-)

I have learned Gods delay is not His denial

We have been anxious for our trip to Cincy for P's scope- he is breathing so differently and tolerating the speaking valve great! We were supposed to leave on Tuesday. We received a call last week that Preston's scope and surgery date was cancelled and rescheduled for Sept 3rd. That was a FUN call to receive after I spent 1/2 a day planning hotel reservations, RMH short stay room reservations, airfare arrangements, care for Reid, and the most important piece- Tim was going to be able to come with me. All of that has changed. I forced myself to believe this was for a reason and a lot of things started to fall into place even more perfectly than before. I am still having a hard time getting over the fact that Tim won't be coming with me. I will be flying solo with Mr. P for this BIG trip! Tim insisted taking time off work etc but I think it is VERY important Reid have one of us here for him and Tim starts a new job with a lot of adjustments and he starts soccer season too- it doesn't make sense to leave those 3 pieces of the puzzle behind. The boys are at an age where they really need at least one of US. We have child care arranged for Reid while Tim is at work and coaching. Tim *might* fly out to be with us if we end up having to stay longer than planned. I have no idea how long I will be gone with P. That is really hard for me to type. The unknown is scary. I would be lying if i said I wasn't nervous about going on my own. I have done it before for a follow up appt but not for a planned surgery and a big one at that (this will be 4-6 hrs if he needs the surgery). I won't have a car this time and I am allotted 4 nights at RMH reserved in advance and then its a hotel room after that. There is a wonderful shuttle the hospital provides which should help. Just requires a lot of logistics and planning ahead I am not used to. My parents have a trip they have been planning for a LONG time to see best friends and they were going to cancel it to come with me. I said NO WAY! For the past almost 3 years I feel everyone has stopped their life in some form or fashion for us due to traveling for Preston and I am saying NO MORE unless its an emergency. I know if it came down to desperate measures they would do it for me. I am simply updating everyone to ask for a few specific prayers and THANK YOU for delaying your 'Trache free for P' wearing shirt day till Sept. 3rd. We leave Sept 2nd to fly into Cincy and his scope is Sept 3rd. Dr Rutter will then let me know how his airway looks and admit Preston to the complex airway floor for 4 nights and 5 days. They will take aggressive measures to get him breathing as close to trache free as possible (drill a hole in his trache and downsize it etc). If he cooperates and is ready, they will avoid the surgery and probably send us home with a smaller trache and a capping plan/prescription. That is what we are PRAYING HARD- VERY HARD FOR! If he doesn't seem to tolerate the 'tricks' Dr R is going to do in hopes to avoid this surgery, he is scheduled for a single stage LTR on Sept 10th. 

If you think about it or have a minute, it would mean a lot to us to have you pray specifically for:
- No complications while flying (I will get a pre-board auth which should help a TON) and to sit next to someone understanding and helpful (nobody will ever fill my friend Kristen's shoes in this dept;) 
- My strength and stamina- anyone who knows me well, knows I require ALOT of sleep for health reasons and I anticipate being tired with a 5 day stay inpatient and Preston not wanting me to leave his side for a second. Sleep in the hospital is non existent. 
- Doctors wisdom and guidance for what is best for Preston 
- Peace for Tim (i am pretty sure this will be equally hard for him staying here as it will be me leaving) and an easy transition for Reid (i anticipate a lot of "Where's brother and mommy?" happening- the boys are VERY close at times. 

I will be updating the blog during our visit and asking for more prayers if we need them.  I just can't thank you all enough for the private messages you send me during these periods. Calls and texts are NEVER a bother even though many of you are always afraid to 'bug' me- NOT THE CASE E.V.E.R.!  
I learned in my Mary Kay business years ago that Gods delay is never God's denial- I couldn't believe this to be more true in my personal life when I received the call from the hospital with delaying P's scope/surgery. I started reading Jesus calling for my daily devotion and I wanted to share one of my favorite's that resonated so deep in me. I hope this encourages YOU as it did me. 

KEEP WALKING with Me along the path I have chosen for you. Your desire to live close to Me is a delight to My heart. I could instantly grant you the spiritual riches you desire, but that is not My way for you. The journey is arduous at times, and you are weak. Someday you will dance light-footed on the high peaks; but for now your walk is often plodding and heavy. All i require of you is to take the next step, clinging to My hand for strength and direction. Though the path is difficult and the scenery is dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. Psalm 37:23; Psalm 16:11 

On to the next step we go…………...

Soakin up Summer!

We are enjoying summer to its fullest! Unfortunately we leave again for Cincinnati in 4 weeks so we are making each day in July count!! Tim will head back to work once we get home. I can't wrap my brain around the fact we were gone ALL last summer. The boys are growing up SO fast and I am so thankful to not miss this summer for MANY MANY reasons!

We have been adventurous and since the boys love being in the car, we road tripped to Emporia for a b-day party (my dear friend and sorority sister has twin girls close to the boys age, a 4 month old, and 4 year old- it was long overdue to pay them a visit and celebrate her oldest turning 4). It was a blast! We plan to go back for her twins 2 year b-day in a few weeks! We also took a drive to Lawrence and enjoyed an evening with one of Tim's former student's family. They invited us for dinner to their summer farm house and we got some great family pics their daughter took (she is a very talented photographer) and had a delicious dinner. The boys got to ride on a tractor and we have another visit planned to have more pics taken and maybe fish. We also drove to Pleasant Hill for the 4th of July and spent the holiday with the boys 'Auntie' Sarah and her family. Tim and Sarah went to highschool together and she is one of our dearest friends. Her folks built a house on a ton of land and they have a tractor the boys were eager to ride on. We went swimming and enjoyed fireworks. Several trips to the zoo have been fun too!

Caught this of my boys walking to see the penguins

There have been many FIRSTS occuring in the Walker household.

* The boys are potty trained. Hallelujah! Preston signs 'potty' GREAT and just needs to master pooping in the potty but is super close! I put off potty training him thinking it would be best to do it once his trache came out but he was ready and once Reid did it, he followed suit. Nothing is cuter than seeing these little bottoms running around here in little 'unders' as the boys call them. Reid is quite the encourager with Preston going potty! Pretty cute.

* We made a fire with the kids in our pit and roasted marshmallows for the 1st time. It was super fun and Preston decided after 1 roasting to just grab in the bag and eat the marshmallows raw. No time to roast according to him. :)

Once we mentioned FIRE to the boys, they immediately grabbed their fire hat. Tim and I were cracking up!

*We took both boys to the pool for the 1st time. We are SUPER cautious with P but he is a little fish so we try our best to let him 'swim.' The puddle jumper helps a TON! They ask to go swimming so much that we decided to get a giant pool for our back yard and it was the best $20 we spent all summer! SO FUN! :)

SWIM BUDDIES!

Cousins came to swim

*Preston says 'Hi' and 'Dadadadada' for 1st time!

The payoff has arrived! Preston clearly has much more room to breathe now that tonsils and adnoids are gone and aritnoid is trimmed back. His breathing is completely different these days and random noises have been happening so we capped his trache this morning with our finger for a minute to see if he could make some noise and out came "Dadadadadada!" We did it again and out came "Hi Dadadadada" Not a dry eye in sight. PTL!

We also put the speaking valve on him last night (7/5/14) and he ran around his room with it on saying Hi Dadadadada and a few giggles came out. It was awesome! I am believing with all my might that he will be spared the 2nd single stage LTR surgery! We are asking for massive prayers for this!

Here are some random pics of our other summer days spent at home!

Staying up a little later lounging in our bath robes

Many trips to the ice cream shop have been in order!

Mr Penguin and Mr Bear got the pleasure of joining us on one of our daily morning runs! Precious memory!

Summer has worn these twinkies OUT!

Fly home? Not sure.....

I am keeping this short and sweet. Wish it was filled with better news. Preston is not eating and aspirating on everything he tries to eat. We are taking him into clinic tomorrow. Its been a LOOOOOOONG week. He is getting all nutrition via g-tube. He was doing great and now not so good. We are tired and the suctioning is constant still. The plan is to fly home at 7am on Friday. God I hope we can get home and the dr doesn't want us to stay. Prayers are appreciated. To say we are ITCHING to get home, sleep in our own bed, and love on our other little man is an understatement. I called to talk to him today and he said, "Mommy come home!" I am working on it buddy, trust me! Thanks to my sweet friends for texting and messaging me loving and supportive messages.

T-shirt order going in Thursday at 12noon

T-shirts for P are being ordered Thursday at 12noon. I can't wait to get these in everyone's hands! We have over 125 shirts ordered so far- THANK YOU to all of our friends and family who have ordered one! This has been SO FUN-thanks for the messages with excitement! :) Email me your shirt size and color if you want to order. lwalkermk@gmail.com The adult shirts are $11 (sizes small- 3xl) and $7 for the kids shirts (2T, 3T etc). The shirt colors available are white, pink, green, orange, blue and purple. These will be classic colors (the green is Kelly green, purple is a k-state purple, and blue is royal blue- hope this answers many of your 'color questions' :)) Our goal is 500 shirts and when we reach that goal, Tim and I are drawing a name/family to get reimbursed for their shirt order as a huge THANK YOU. 

We couldn't think of a more fun way to celebrate this milestone for all of us! Our dear friends sent us the design and I just can't stop smiling when i see it! We plan to have a HUGE decannulation party for him and for ALL OF YOU who have been by our side through this journey and we want everyone to wear their shirts for a huge group picture! I want to have the picture made into a canvas for P's room! I would LOVE to have everyone wear their shirts on the day of his next scope (August 5th) and send me a pic or post to my fb page (of you or your family wearing them). I cannot wait for the day he is old enough for me to show him the pictures of all of you sporting his shirt and showing your love and support for him (and us). 

Cranky pants and HME's for Diego

How is Preston doing you ask? Well, the picture below describes his mood quite well. If you know P well, you know he is always happy and easy going. However, he doesn't seem to be in the mood these days to be messed with. I guess somehow he thinks if he puts his blanket over his head, he won't be seen. LOL He has been a good sport with lots of walks, shopping in the really nice mall by our hotel room (the rain ruined plans to do the zoo or aquarium or butterfly exhibit. He really enjoyed spending one-on-one time with Tim yesterday while i went to KY. Preston is still really juicy and needs lots of suctioning- nights are far worse than days. He still is on and off with his eating but as long as we stay on top of his meds, he is tolerating everything fine. Ready to get home early Friday morning and see brother. He asks for Reid and I know he misses his side kick. I got a video today of Reid singing Twinkle Twinkle for the 1st time and i couldn't stop smiling. He is so loved and having a blast this week playing with dear friends and getting spoiled by Grandma and Grandpa Walker while my folks are out of town. 

Tim and I almost peed our pants when we realized he was like this 1/2 way thru shopping! I am sure we looked like parents of the year! LOL

EXCITING update about Diego (see my post called The American Dream for the full story). About 1 hour after my post I got a text from my friend Heather. Her little girl has a trache too but she is capped so no longer needs HME's aka noses. She asked for our address saying she has a WHOLE BOX of hme's for Diego! I about cried! I immediately contacted Diego's mom via fb and she was speechless. Heather OVERNIGHTED the box to us yesterday and I got it at 12noon today. We are headed to RMH after Preston wakes up from his nap to deliver this precious cargo to this family! Everytime I see an HME, i will think of Diego in Mexico! Thank you Heather for being an angel in disguise! I have also received several inquiries about how to help this family more. Pretty awesome! 

WE GOT THE BOX OF HME'S!!!!!! I was pumped!! Thank you Heather for this gift!!!

The American Dream

Can you imagine spending 3 years saving up $27,000 so your son could be seen by Dr Rutter (Preston's ENT) and receive 4 procedures that are necessary for his trache to be removed and facial abnormalities to be fixed??? I can't return home without sharing the story of an incredible family we just met last night at RMH who did just that. They are from Veracruz Mexico and the mom (who i talked to) is one of the most GRATEFUL human beings I have ever met. She told me this was her ultimate DREAM for her son to be seen in the U.S. (she has never been here before) and this trip is their DREAM COME TRUE. They have sacrificed in ways some of us would never think is possible and her little boy, Diego, is beyond smart and sweet. He took to Preston right away and even put his arm around him when I asked the boys to pose for a picture together. His face just devastated me when I think of all the pain he will go thru for future surgeries. She said so many people look at him and just shy away because he is so deformed yet he is the kindest little boy and so very tender and sweet. :( She was telling me how the RMH is like a total dream to them and the hospital does not even seem real to them. They can't believe they get their own bathroom in the room at RMH and have access to food that is for everyone. She can't believe that nobody steals their belongings if they leave them at the table in the cafeteria (when they get up to get silverware or a drink). She said the supplies for Diego for his trache are too expensive to purchase so they go without certain things (like the HME Preston wears on his trache for humidity). Really??? She was given 2 from the hospital yesterday and is 'saving them' for a time when he desperately need it. Ugh! I just wanted to give her the rest of our stash so badly. Preston gets a new trache changed (by me and Jess) 1x a week- Diego gets his changed by the hospital every 6 weeks. I wish so badly I could do more for them. I have never been so HUMBLED to be an American until I talked to this mom. I would like to believe that moments like meeting this mom and hearing her story are reminders from God that no matter how rough the road seems, it is always worse for someone else and I need to be thankful and grateful and focus on the positives. Here is a precious picture of the boys playing last night in the game room. May God continue to bless this family! I am forever touched by them! 

Diego and Preston playing together in the game room

Day 3 and 4 recovery

We are discharged from the hospital, checked out of our 'short stay' room at RMH and now have a hotel room till next weekend. Preston is doing so-so. He seems to be at his best with a full tummy of liquids/food/medicine. Makes sense. Nights are terrible. He needs constant suctioning…..like every 15-30 minutes. Makes for little sleep for everyone. Hopefully tonight goes much better. We need good rest.  We have been g-tubing Pedialite to keep P hydrated and we did a can of Pediasure today- he was refusing to eat all together. Now he is much happier and had some grilled cheese and apple juice. Hopefully that continues. Glad we are in town a little longer incase he doesn't improve but I am believing he is on the upswing for sure! 

On a more fun note, I get to leave tomorrow afternoon for Kentucky to do an MK Beauty Bash event in the evening with several of my consultants. I can't wait!! They are only 2 hrs from where we are staying so I wanted to be sure and take a little trip to do an event with them. Will be a nice change of pace and I am so lucky to have MK be incorporated in the 'traveling portion' of this journey we are on. 

It has been really nice weather (in the 70's) so we have been walking lots. Preston loves his walks so this is nice! We are also near a very nice mall for when the rain hits. Hope everyone is having a GREAT weekend!! 

Loving his walks!