17 days and counting!

It's almost time! I find myself counting down the days till I hop on a plane with P to Cincy! June 4th is right around the corner and Tim is driving to meet us there. I can hardly believe its been a year since we did this for the 1st time. I also wanted to explain what this trip means for us. I think i gave everyone the impression this is the trip for decannulation (trach removal). This trip is 12 days and then we come back home for 8 weeks and then return for 6-8 weeks assuming everything goes great! Last year we packed up and were gone for 6 weeks straight! I didn't know how hard it would be to leave Reid behind and now I know which is killing me. "Ignorance is bliss"- so true! 

June 5th is the day P will have his tonsillectomy and aritnoid trimmed back. That is when we will get the final word as to whether or not Preston is ready for a single stage LTR surgery with decannulation (last summer it was double stage but one of his grafts didn't make it - he got an infection while in the hospital that ate the anterior graft so it has to be redone) So happy the posterior graft looks AWESOME! :) The next single stage LTR surgery we are hoping he is ready for will be scheduled 8 weeks later. So we are looking at early August. Not ideal with Tim coaching in the Fall and starting a new teaching job but we will manage. We are so focused on getting to hear our son's voice for the 1st time (he doesn't tolerate his speaking valve due to the extreme amount of scar tissue surrounding his airway), that nothing will get in our way or bring us down! 

June 5th will be so nerve wracking for me. I am so used to hearing the bad news after some good news each time P is taken back to the O.R. to be scoped. I don't want to be negative but I am just used to 'not such good news' to come next. I am believing this time will be different. Once we get the GO to schedule his surgery, I am also pulling the trigger and releasing the INCREDIBLY AWESOME T-shirt design that was made for us by dear friends who own a printing company! I am holding on to the vision of everyone wearing their shirts on the BIG DAY of his surgery and posting pics on my fb page for support! Tim and I will need it. Preston will be sedated for a week post LTR surgery this Fall. More details to come of what we can expect but it won't be fun and I have been warned by a friend that this will be far worse than the double stage LTR for many reasons. So all of the support we can get the better! :) And what is it about t-shirts that everyone loves? I am BEYOND excited about this and this will also help offset some of the cost of being gone again for another 6-8 weeks this Summer/Fall. Stay tuned friends...........you won't be disappointed! We will have kiddos sizes too! 

We stay in Cincy for 12 days in June to ensure all goes great with P's tonsillectomy recovery and I will fly home and have roughly 8 weeks to soak up summer time with the boys. :) I can't wait!! 

When we head back for the big surgery, I will have Tim with me for this but then he will have to leave (unlike last year) for soccer season to start and school to begin. I am terrified to be alone. Once again, Preston will be recovering and intubated with trache removed and once they extubate him, he will hear his voice for the VERY FIRST TIME. We plan to video record it. Tim will be there for that! It won't seem real. He will be very weak and go thru drug withdraw from being sedated for that long. I have been told he will need to relearn how to eat, sit up, walk, talk etc. Doesn't this sound fun? UGH! My folks will come out and stay with me for some of this time. I am hopeful I will have a room at the RMH again. I can't think too far beyond the tonsillectomy trip but I know in the back of my mind what is in the near future for us. I want for my son to TALK and be free from the medical stuff he is inundated with on a daily basis. Just wish the process wasn't so complicated. 

We are asking for specific prayers:
-swelling to be down completely on June 5th and everything looks calm in his airway
- posterior graft still looks great
-minimal pain with tonsillectomy 
-minimal issues eating after his procedure
-we get word that he is READY for the next and final LTR surgery 
-safe and uncomplicated travels

Thank you will never be enough but I just want each of you to know that your support means so much to us! We are 2 1/2 years in to this journey and its almost over. I am praying that THIS will be the year I get to celebrate my boys sporting naked necks together!!!! 

Easter and flights booked for Tonsillectomy!

We had a wonderful day celebrating Easter with both of our families today! We headed out bright and early for a family walk and trip to the park. Couldn't have asked for better weather! Once the boys can attend Sunday school or sit still better we plan to venture back to church. The boys loved hunting for eggs (my parents hid 100 eggs- they had so much fun watching the kids) and my mom had a delish brunch for all of us. It was fun seeing the cousins all play together. So glad my sister and I live so close to each other where a holiday seems like just another day sometimes with all the kids together! The boys napped over at Nana and Grandpa Walkers and then had another egg hunt before dinner once they woke up. My father in law made grilled salmon that was amazing!!! The boys were wiped and ready for jammies and a show once we got home to wind down. Thankful for such a nice day!!!

My parents with their 4 grandkids 

VERY proud of his eggs

This pictures makes me realize we MUST do something with Reid's hair before summer hits LOL

Auntie LOVE and snuggles

These two were SPENT

GiGi reading a book to Reid- priceless!

On another note, we have our flights booked to Cincy for Dr Rutter to take out P's tonsils and trim his Arytenoid on the left side back. We leave June 4th! Tim is driving the same day I fly with Preston and we will fly into Indianapolis where Tim will drive and pick us up. We will then drive to Cincy from there. Much easier this way even though it sounds more complicated. Flying Delta directly to Cincy with a plane change is a nightmare. I will never fly them again after our last trip! :( Southwest flies directly there (no plane changing is a huge plus) and renting a car is more expensive so it will be nice to have our own car for the 12 days we will be there. No idea if we can stay at RMH yet. I call them on Monday to discuss out options. We fly home on the 15th. It will be here before we know it! Tim is ready to say good-bye to his school year and soak up summer with us at home. It's not been a good year for him unfortunately and he took a new job for next year at Blue Valley Southwest. I can already see a pep in his step with the anticipation of a new start with better things ahead. We are also VERY VERY hopeful we get the green light to schedule a date for his Single stage LTR and decannulation while we are in Cincy for the tonsillectomy. That will be 8 weeks later. Hard to believe it's been almost a year since we were preparing to live in Cincy for P's double stage LTR. He has come so far! 

Answered prayer!

When we got the news another summer would be spent in Cincinnati I was devastated. I couldn't bare leaving Reid for another 2 months over summer so Tim and I went to the drawing board. We just couldn't come up with a perfect plan. We knew our families and friends would take wonderful care of him but after being gone last summer, I knew how much we would miss and I just couldn't do it again. Plus the boys are finally at an age where they play together and talk to each other and HATE when the other one is gone. We tossed around the idea of us taking turns flying home for a week at a time but the cost would be insane. We considered bringing Reid to Cincy AFTER the single stage LTR surgery but knew that was next to impossible with how different this surgery and recovery would be. Plus we would all be sleeping in the same room- no way that would work. My heart was literally breaking at the thought of missing out on another summer of being home and keeping the boys together. Who wants their 2 1/2 year old little boy stuck in a hospital during summer fun? Not me! He deserves a break! I was hoping they would say he wasn't ready till Fall. I know that sounds so twisted since we are so eager for him to be decannulated. I have longed to be able to take the boys to the pool together for the first time (even though it won't be nearly as much fun for P with being so restricted near water). All the morning walks to the park, going to the zoo, trips to Deanna Rose, and just soaking up the sun in the back yard playing together are things I want to do so badly. I started praying harder than I ever have before. Even several times a day. I was begging Jesus for answers. I fought back tears every time I would talk about this to friends or our family. Everyone has been so HAPPY for us to find out this surgery will mark the end to a V.E.R.Y. long road for our family. And we were happy too but the timing just didn't sit well with me. I know Tim being off all summer is perfect for this situation but when you have a twin son being left behind, it is not a HAPPY time. :( I won't lie- it was really dragging me down in every way. I finally had a talk with myself to release this. We didn't have a date for surgery yet. We were waiting on a call from Dr Rutter's amazing nurse, Janet, to tell us the final plan and timeline after Dr R reviewed EVERY test from his week long stay. We sold our house the very next day and that kept my mind busy! Then I was prepping to leave for St. Charles, MO for an MK conference so I didn't have time to think about this anymore. While in the car on the way to the conference this past Friday, Janet called me. It was the phone call that was the answer to my prayer and I still can't believe what she shared.

She said it turns out that Dr Rutter wants to remove P's tonsils before the LTR surgery. I was shocked. It will give him much more room and he needs the arytenoid cartilage on the right side trimmed back (whatever that means lol). Dr R wants to do both of these procedures together. He won't do it till June to give Preston a bit more time to grow. Should have a date tomorrow or Tuesday! We will be there for about 10 days and Tim and I both take him. We will all fly for this and hope the RMH has room. Otherwise we will be in a hotel again like last summer till room opens us. She said that means the Single Stage LTR surgery won't be till at least 8 weeks post Tonsillectomy so that means we won't be going back to Cincy for the month long stay for surgery till end of August. This means I GET TO BE HOME MOST OF THE SUMMER WITH MY BOYS!!! I have never been so emotional and filled with gratitude. Once again, this journey continues to be a testimony of God's grace and mercy on our life. We have made it thru every obstacle and trusted in Him when things seemed so challenging and hopeless. I will also be able to attend (for the 1st time in 3 years) the FULL conference and awards event this summer in Dallas for work. I look forward to this every year and I can't wait to attend the FULL event! It will fill my cup up before we head to Cincy at the end of Summer. This timeline poses a bit of a hurdle with Tim returning to work and his coaching season is Fall. :( But we will manage and I will plan to be with P the entire time and Tim will be with me for the surgery and I am planning on having my folks with me. Reid will have Tim home with him and I am working on childcare for daytime for the duration of my absence. He will be spoiled rotten and it will be great that Tim will be home every night with him and every weekend! I have a new pep in my step since receiving this news! I can't stop smiling! Looking forward to posting the date of P's Tonsillectomy for June soon! :) Now I am off to plan our summer activities and soak up every minute we are home. I sure have a new level of appreciation for being HOME :)

Thoughts from P

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The above is Preston's first blog post, here is his new dog.

3's a crowd

An ENT, Pulmanolgist, and GI doctor walk into an OR....that's how the joke starts. Preston got a 3 way scope today from three different docs. The GI left an impedance probe to measure any reflux he has, but did not note anything concerning in his scope of the GI tract. The Pulmanolgist noted the bronchial floppiness, and will stay on the case. He did a saline wash of the lungs and sucked out that part. They will culture it to be sure nothing out of the ordinary grows. He said that he moves air well enough that it should not be a concern but will monitor the case. Dr. Rutter, the ENT, noted that the airway shows growth and still needs to grow. He said the lower graft is the one causing more problems and the upper one looks great. This is opposite of what we originally thought. He is not surprised that he can move air around the trache but does not tolerate the passe muir valve. It has a lot of scar tissue to move around. 

The plan then is to return to cincy this summer for another scope. At that time the ENT will determine if he is a candidate for a single stage LTR, the same surgery from last summer, and remove the trache at the same time. The scope happens and then the surgery is 5-7 days later if Dr. Rutter likes what he sees. We would be here for another 4-6 weeks after the LTR, with P it is more likely 6. He is full of surprises. He would be in the ICU for a few days while he is intabated. He is scoped then servals times every 1-2 weeks post decannulation to be sure he looks good. Then that would be all she wrote. 

An ENT, Pulmanolgist, and GI doctor walk into an OR....that's how the joke starts. Preston got a 3 way scope today from three different docs. The GI left an impedance probe to measure any reflux he has, but did not note anything concerning in his scope of the GI tract. The Pulmanolgist noted the bronchial floppiness, and will stay on the case. He did a saline wash of the lungs and sucked out that part. They will culture it to be sure nothing out of the ordinary grows. He said that he moves air well enough that it should not be a concern but will monitor the case. Dr. Rutter, the ENT, noted that the airway shows growth and still needs to grow. He said the lower graft is the one causing more problems and the upper one looks great. This is opposite of what we originally thought. He is not surprised that he can move air around the trache but does not tolerate the passe muir valve. It has a lot of scar tissue to move around. 

The plan then is to return to cincy this summer for another scope. At that time the ENT will determine if he is a candidate for a single stage LTR, the same surgery from last summer, and remove the trache at the same time. The scope happens and then the surgery is 5-7 days later if Dr. Rutter likes what he sees. We would be here for another 4-6 weeks after the LTR, with P it is more likely 6. He is full of surprises. He would be in the ICU for a few days while he is intabated. He is scoped then servals times every 1-2 weeks post decannulation to be sure he looks good. Then that would be all she wrote. 
The weather here is crappy too, just like home. We have a FIES swallow study tomorrow and then home tomorrow. Can't wait to see Lorna and Reid, who is raising some hell transitioning to a toddler bed. Good thing they both are not transitioning. I have spring break next week which will be nice to rest and recoup. I will be able to knock some other stuff around the new house and hopefully sell an old one. He loves his Red Baron airplane too.

New Year brings New Home and great changes!

Tim and I decided 2014 was going to be a GREAT year for us despite what happens with Preston. So far it is living up to our expectation. I think we are at a point where the trache doesn't define P anymore ( i hate admitting that there were times it did)  and we are bound to live ALL OUT this year with nothing holding us back. Feels good and free! Till we need a babysitter and realize the risk of leaving P with someone who isn't totally trache trained and knows what to do in an emergency is not worth the freedom that we long for at times. Oh well, everything good comes with a price tag. I am willing to live with that and be OKAY with it :)

After a solid year of looking and going back and forth about moving, we bit the bullet and bought our 'forever' home. It is only 5 minutes from where I grew up in Leawood so I love the neighborhood. Lots of huge old trees and we can walk up the street to the private Catholic school near by. Just feels right for us! We are also only 5 minutes from Grandpa Walker's work so we plan to make more visits which the boys will love. January was B.U.S.Y. as I traveled for mk and we packed up and moved out in one weekend in order to update some things in our old house. We had the kitchen gutted and lots painted and our home officially went on the market! WE DID IT. We talked about it for so long and the time never seemed right. This time it feels like the right time. We close on our new home on Valentines Day (how romantic, right?) and we will move in 2 weeks later. The boys are going to have so much room to play and run around. I can finally have the kitchen of my dreams to bake till my heart is content. We are much closer to all of our family (not that we were that far away before) and Tim is only 10 min. from work. I get to have my office that I have longed for with french doors. :) I am eager to meet our new neighbors and discover some favorite walking/running routes in the neighborhood. I forgot how stressful moving can be but it has honestly been a breath of fresh air for all of us! Our old house holds so many memories but we are ready to make new ones in a new place. Can't wait to post pics of the boys standing in front of the SOLD sign once the snow melts!

Tim heads to Cincinatti on March 10th with Mr. P for a full work up of tests and scans/scopes to see about the swelling in his airway. They will be gone for 4 days and I booked their stay at RMH already. I am staying home with Reid. The move has been nice distraction from worrying about what we will find from these tests. I am trying to pray rather than worry. Easier said than done. I will post results once my boys return home. :)

The fun piece of news for Tim is he will be picking up my 6th free mk car at the end of March for HIM  to drive. MK launched a new black BMW. Such fun perks! They are having it delivered for him in about 6 weeks. We will have a huge car party at Baron BMW for my whole MK Unit, family, and friends since this will be the first one in our area to be delivered. Tim has it really rough these days lol!

The snow/blizzard here has led to 2 eager boys longing to 'scoop snow' 24/7. They beg to go outside and I am VERY ready for Spring. Reid asks to put his boots on at least 10x a day and grabs his coat to 'scoop' with a meltdown when I turn down his request. Preston loves being outside but as soon as his hands get cold, he is one happy camper to turn in for the day! LOL Cracks me up!

I hope everyone is off to a great start to 2014 and staying warm - its been fun reading the posts from our friends and see what everyone has been up to! Pics to come…..need to download them off my computer!

Christmas 2013

Start of our Christmas break- Preston pointing to Ronnie…..I swear he remembered him LOL 

We had a very low key Christmas this year and it was our first Christmas for 2 occasions. We delivered 59 gifts to the KC RMH. Each family staying in both houses received a satin hands hand cream and satin lips lip balm from tons of donations I received. We also gifts for the volunteers. THANK YOU from the bottom of my heart to each of you who donated. I got a got today thanking me for the donations and specifically thanking me for the items we donated due to the cold weather and dry hospital air causing chapped hands and lips. It make me tear up! Tim and I plan to do this every year and I can't wait for the boys to be old enough to really understand what RMH has done for us and what we will continue to give back to others who need their services. We also had the chance this year to take the boys to both sets of Grandparents houses to open gifts and celebrate on Christmas day. Last year everyone came to us. Tim kicked off the holiday by heading to church for candle lit service alone :( I miss going to this service each year and can't wait to take the boys! We celebrated first thing in the morning at our home letting the boys play with 'Santa' gifts and open up stockings. Then we headed straight to Grandma and Grandpa Walker's house in our jammies to eat strada/cinnamon rolls/yummy breads for breakfast and see what Santa brought to their house too! We stayed all day while the boys played with their new toys, napped, we showered and headed to my folks house for Christmas dinner and more gifts! It is so nice our parents only live 10 min apart! The boys got spoiled and we enjoyed family time. We had a great day and had an early morning ahead of the next day to finalize P's ear surgeries with surgery #3. 5:30am check in time is no fun. It's over (as I type this on Dec 30th) and we are DONE DONE DONE with his ear surgeries! Hallelujah! He will still have his hearing aid and eventually maybe a baja implanted but that is down the road and nothing to be too concerned about. His hearing is AWESOME even with unilateral hearing loss. This was more for cosmetic/functional purposes (some work was done on the left ear after all). Our clinic follow up appt is this Friday and then we will say good-bye to Dr. Andrews for a long time. He has offered to do plastic surgery on P's neck once decannulated to make his neck look as if nothing ever happened. I said YES PLEASE! So i am excited about that. After all, it only seems fitting that the dr who gave him his trach can 'finish the job' whenever that will be. He truly had a vested interested in Preston and us and for that, we are grateful. I think its safe to say this Christmas was fantastic. We are blessed! We hope you had a wonderful and meaningful holiday and may 2014 bring you happiness and joy! Here are some pics to highlight the holiday. I didn't get as many as i thought because I was soaking up being in the moment this year! :)

We were given a tour of the KC RMH home. They had a fish tank the boys LOVED!

Christmas morning with my lovies…..none of us were awake yet!

Trying to get a family pic….P was especially excited to open gifts. I passed on cute Christmas outfits this year….I went for comfy and casual since we did 3 Christmas's in 1 day! 

Attempt #2 was much better :)

My dad took this of me after all the presents were opened, dinner was over, and the kids were in jammies. I was SO happy to finally sit for the 1st time all day :)

Thanksgiving and MU game 2013

So thankful we don't have to travel for the holidays! Thanksgiving day was spent at my parents house this year. We had a wonderful dinner once the boys woke up from their naps. We headed to Tim's parent's house the next day for dinner. Reid spent the weekend at their house and we took advantage of respite days for Preston and had 24 hour care from Jess and Amy so we could take off to Columbia for the weekend to see MU kick butt! VERY MUCH ALONE TIME NEEDED for us. The weather was perfect too!

Headed to Grandma and Grandpa Preston's house for Thanksgiving

This poor kid got his hair brushed and it looks like 1980's hair style

Love that my sister and I get to spend every holiday together

This little boy sure LOVES his Grandpa

Playing under the desk to end the night

Great end to the holiday weekend! 

Happy 2nd Birthday!

Happy 2nd Birthday to my boys! 

This post is late but wanted to capture the boys 2nd 'train theme' birthday. We did Thomas the train but with the boys interests changing so fast, I would have done a 'tools' theme for Reid and 'fireman Sam' theme for Preston if i hadn't already planned Thomas in advance. They didn't care- they just loved the donut holes I got for their party. My mom made their cake again like last year. It is made from scratch and DELISH! It is going to be a tradition to have pumpkin cake each year since their B-day is in November and we plan to have a cake for each of them with their own theme as they get old enough to pick and say what they want. Here are some pictures from their actual birth day and party.  So cliche but time is flying….its like sand slipping thru my fingers and I just want to freeze time. But as soon as I say that, they learn something new or say a new word (Reid) or learn a new sign (Preston) and then I can't imagine not celebrating these milestones. They have become very close and want to do most things together. Reid says 'bruder' for brother and Preston signs Reid name 24/7. They get upset if one wakes up from nap or in the morning before the other one. They want to go and open the other's door to wake them up. Pretty cute! Glad they have each other as buddies for life:)

Birthday Breakfast

Yay for turning 2! 

Birthday SELFIE

The boys buddy….Jess! The best day nurse we could have ever asked for! 

Happy 2nd Birthday to my little snuggle bunny. P likes to sit in anyone's lap he can find. He is my snuggler every evening from 6-7. Doesn't leave my lap. 

This kid is full of SILLY :)

Happy 2nd Birthday to my Reidy. This pic was taken in my office which is so fitting for Reid because he is definitely my little working buddy. Anytime I am in there working, I can always count on him to find me and 'help' in any way! Total perk of working from home! 

Off to the dr for their 2 year check up. They are both almost 30lbs and got a clean bill of health! KU Medical Home is A.M.A.Z.I.N.G- nothing like having top notch NICU dr.'s as your kids pediatricians till they are 5 years old! We lucked out for sure! Plus, we got to see our 2 fav KU nurses that day! We took them holiday cookies and a holiday plate! :)

Preston sure loves Alex- went right to her for some love- she was P's primary night nurse in the KU NICU once he was transferred and she was a total blessing. Thankful she has become a close friend of mine too! 

If it weren't for Liz, I would have never felt equipped to take Preston home. She was P's primary day nurse and fell in LOVE with him and in turn, we fell in love with her. She is a very special friend! 

Turning 2 is tiring. Had to take a pic of him cuddling with his bear that night. Too sweet! 

Thought it would be fun to add pictures of their birth to see how far we have come. Hard to see P without his trache. He was born a fighter!

Preston (baby B) hours old 

Reid (baby A)- first born and only a few hours old

Let the party begin

Poor GG- she always wants to get a hug from the boys and a picture and they NEVER cooperate. We tried! 

Pumpkin Cake

Today we closed the chapter to P's 'ear journey'

Tim and I are smiling from ear to ear today as we closed the final chapter to P's ear surgeries! He looks pretty rough and has a lot of pain but should bounce back like he always does. Dr Andrews is simply amazing. I plan to post a before picture at the start of Preston's ear surgeries and once the swelling is down, we will post a good after pic to compare. Dr A actually gave P some lipo suction (hence the little scab on his temple) to fill in the dimpled and rough skin next to his ear. P also got a cool hair buzz :/ Unfortunately his cheeks did like the tape they used to shut his eyes during the procedure so we will work on getting the rash to subside this week. Our clinic follow up is next Friday and then we should be HOME FREE!!! We are BEYOND excited! This is our 3rd holiday break spent in the hospital with Mr P since he was born and 4:30am wake up calls are no fun after a BUSY Christmas Day. Next year we will cherish being home and the boys can play with their toys all day together and maybe they will even sleep in LOL :) Reid is having a fun filled day with Grandma and Grandpa Walker and we are so fortunate for all of their help with him so we can focus on Preston. My sister in law is bringing us dinner tonight which will be wonderful and we should be headed home tomorrow. More rest for all of us is needed as Tim and I both woke up with colds today. Just glad we don't have to worry about working right now and we can take care of P and ourselves. We hope everyone had a great Christmas yesterday.......Santa came and spoiled the boys rotten!! Thank you for the well wishes and prayers as today went GREAT! :)

Halloween

This year was so different than last year trick or treating with the boys! They went as Milk and a Cookie thanks to my sweet friend, Hilary, who made them and passed down the costumes from her twins last year. It worked out GREAT and they were a huge hit! Reid was so proud of himself to wear his costume and P tore his cookie off instantly. So it took some convincing but we managed. We made our rounds on Thursday to Dada's work and got to see other kids in costumes, play in his classroom, and show off a little. We try to visit Tim every now and then for a little field trip. I didn't realize the boys knew where we were until we pulled in the parking lot and Reid said, "Dada"….i couldn't believe it! Then we paid Grandpa Walker a visit at work. Everyone at the bank loved them. They even got cup cakes! After naps, we headed to a trunk or treat with my sister, brother in law, parents, and the boys cousins. They actually got the concept of taking the candy and putting it in their bucket. We decided to hit up her neighborhood afterwards and the boys had fun chasing their cousins to the doors and running in the yards. This age is TOO fun and precious. It was a fun day to remember!

Did a dry run at costumes the day before. 

So proud of himself to have his costume on

Get this OFF me

Coloring our pumpkin

P really got into it

Visiting Dada at work

The big halls were scary......I love this picture because I see the look on Tim's face and I am so grateful he LOVES being such an involved dad! 

This picture says it all when we go into Tim's classroom....pure JOY! 

Busy at Dada's desk

Fun visiting Grandpa at the bank

Splurging on cupcakes

Trunk or Treating

We didn't realize we were going to match. Our mom bought us these shirts a few seasons back and we both had it on when we arrived to trunk or treat! I just love that my sister and I can raise our kiddos together and they are all 2 years apart! SO FUN! 

Reid giving it a shot!