Sunday, November 30, 2014

Thanksgiving 2014

Thanksgiving was great! Lots of down time to relax, hosted the 1st Thanksgiving in our new home, and we enjoyed doing more fun activities outside since the weather was gorgeous! A trip to the zoo was a blast seeing Santa dive with the penguins. We had friends over for play dates and introducd the boys to holiday movies. They are super excited for SANTA! Preston even learned the sign for Santa. Definitely a holiday break to remember! :) Need to add more pics from my camera instead of just my phone. Enjoy! 

Wednesday, November 19, 2014

Diggers, Dinosaurs, and Donuts! Plus Trach FREE for P Celebration!

Last weekend was BIG for a lot of reasons. My boys had their 3rd b-day bash and time is slipping thru my fingers. :( Their upstairs playroom wall will soon be sporting an amazing 3ft canvas from the celebration showing all of our amazing friends/family's 'Trach Free for P' shirts (the group photo turned out fantastic!). Diggers, Dinosaurs, and Donuts covered every inch of our kitchen and was  a HIT! Preston blew out his own b-day candles. We said good-bye to Infant Toddler Services and had Preston's first IEP with his team. We also got the 'PERFECT AIRWAY' news to make this celebration even more surreal! I always joked with Tim that we would have a HUGE HUGE celebration once P was trach free and planning for it still didn't sink in. It wasn't till I sat down and looked at the photos taken from our group shot and I had chills. My heart if bursting with gratitude to our friends and family who helped us cross over the finish line! Life is GREAT! Preston is vocal as ever. Words are happening slowly. School is the best thing to happen to both of them. The routine feel amazing. Their teacher has me SO excited about learning more signs (he has the words but can't verbally get them ALL out yet so this is a great way to bridge that gap). Now that his IEP has taken place, services have started. He receives speech and OT and changes are already happening. Really exciting! We have signs for all of his friends names at school b/c this little fella is a social butterfly and greets his peers each morning with a wave and "hi!" so we immediately needed signs for their names. I wish i could be a fly on the wall each morning. The best part of all is that the kids are receptive. Reid is a peer in his class (like i have mentioned before) and he can trace his name and loves having me sing about his friends during our song time before bed. I am sure i sound like i am coo coo for cocoa puffs but its so cute! :) He is a BIG encourager to Preston to talk at home too. Hard to believe 3 is here and I plan to enjoy this next year. People have warned me about the terrible 3's but I am choosing to think otherwise. My goal is to keep them busy (i find their behavior is terrible when B.O.R.E.D but fantastic when busy and minds are occupied) and school has made a big difference with this. I am sure my post over Christmas break will include being MORE THAN READY for school to start LOL :) Routine is such a wonderful thing! 

I celebrated the boys actual birth day by taking them to the mall after school got out early. We headed to Starbucks in Barnes and Noble for a coffee for me and ice waters for them. I had them order their waters from the barista with a please and thank you (they thought they were BIG STUFF) and they each enjoyed a giant cookie compliments of the Kids Club! Such a fun program. Then we headed upstairs to the train table (its tucked away in the children's books dept) and played away! We paid the Disney Store a visit for some fun movie videos and then headed to the play area. Such a fun morning and I am grateful I get to spend my days being a mom and enjoying every second before it is gone too soon! They slept for 3 1/2 hrs that afternoon- VERY nice!! Birthdays are tiring ;) If I could tell them now and have them understand, I would simply say THANK YOU! My boys entering my life 3 years ago has changed me in every way imaginable. I look at life in a whole new lens like most parents do! I am more compassionate, understanding, giving, others focused, sensitive, relaxed, and thankful. I can't wait to see what this next year has in store for my little lovies! Tim and I are looking forward to it! :) I have too many pics to post. Here is my fav! 

Sharing a bed with your son

Well, three generations pile into the car and take off to the Queen City, Cincinnati. P did awesome along the way and we stopped and allowed him out to run as much as possible. We were stocked with snacks from Lorna's open house and Nana. We even had Nana-made sandwiches. Those were a hit. He watched 4 Disney movies and did not sleep until we had about 2 hours left of the 10 hour drive. We arrived to RMH and had dinner. He made a direct route for the play room. The funny thing is that anytime Ronald McDonald came around P would sign for grandma since Julie was a clown for Halloween. Pretty funny!

5am came early and we were off to the OR. We got all prepped and went back. My dad and I were walking as the doctors were walking in, I predicted about 40 minutes and I was right. Dr Rutter and Benscotter, the Pulmanolgist, met and shared what they saw. All looks good, the lower lobes of his lungs were a little junky, they suspect due to him not having a strong cough. Also his air way is S shaped, which is normal for kiddos who had traches. No concern shown for it since he is doing well. We were given a 6 month reprieve from coming back and we were given permission to do a revision. Dr. Andrews will do it and that will be bitter sweet. His neck will look as if nothing ever happened. 

We head home tomorrow and will resume life. 

Tuesday, November 4, 2014

Fall Festivities and Halloween

We have had a busy Fall getting into a routine with school and establishing new work hours for me while Tim was in full swing with practices and games. Tim is done coaching so I feel like i can take a breath now. Halloween was fun and I had the pleasure of going to the boys 1st school 'party.' So cute! We pulled Preston's Mickey button out so he is feeding tube FREE. That feels INCREDIBLE!!!! We are gearing up for my 12th annual holiday open house this weekend so my boys will be off to Grandpa and Nana's for some fun. Tim and Preston leave Sunday for Cincinnati with Grandpa Walker. They are driving. Flights were too expensive to justify the cost so they are roadtripping. I am looking forward to some quality time with Reid. Preston will have a another visit to the O.R. on Monday for his post decannulation follow up scope. Please pray his airway looks GREAT! They will be staying at the Ronald McDonald House which we are so thankful for. They had a short stay room available! I am curious to see how a school day for Reid goes without his side kick. The house will be VERY quiet! We are really eager for Preston's Trach FREE for P party coming up! The boys celebrate their 3rd Birthday on the 15th with a Diggers, Dinosaurs, and Donuts party. We decided to combine both celebrations with this time of year being so busy for everyone. We asked friends and family to wear their shirts and it will be so wonderful to finally watch Preston blow out his candles on his cake for the very first time. I have prayed for this day as each Birthday passed and it is a prayer finally being answered. We have been practicing how to blow out candles too so he sure is ready! I had professional pics taken of the boys (and P's first pic trach free) for Tim's b-day. That was fun:) The boys had their very first overnight at Grandpa and Nana's TOGETHER! This was such an awesome 9 yr anniversary gift for us. I never realized how much Reid missed Preston going with him on his overnights until I was putting their shoes on and telling them where they were going and Reid turned to P and said, "You coming with me Preston?" Reids face lit up when Preston nodded yes. Pretty awesome!:) We also paid a visit to see Dr Andrews and show off P's naked neck and have him examine the scar (the plastic surgeon who actually trached P as an infant). It will be a full circle moment for all of us because he will be the one closing up P's stoma sight on his neck for good and making it appear as if a trach had never existed. Normally the revision on his neck would be done by Dr Rutter (his ENT in Cincy) but Dr Andrews offered to do it and to save us travel cost and time would be huge. Plus, his work is so amazing and I really feel like he would do the best job. The look on his face when he saw P for the first time without his trach was awesome. Aside from all of the activities, we have soaked up lots of beautiful weather with trips to the park over lunch and lots of evening walks before winter is here. I also make it a point to visit my parents each week to play the piano with Grandma and see the construction they have going on at their house since the boys love watching the hammers and getting in dirt. We hope everyone is having a wonderful Fall :)

Enjoying lunch on the driveway

Never a dull moment with Mr P. He NEVER has pants on! Sad its blurry but you get the picture!

Playing piano with Grandma

The best plastic surgeon EVER Dr Andrews! 

Loved celebrating the Royals going to the World Series! Loved these crowns they made at school

I made pancakes for lunch went in the other room for something and came back to find the plate on the floor and they were chowing down. LOL And do you notice who doesn't have pants on again? 

1st professional pics without trach- Happy 3rd (almost) Birthday

The Twinkies for Halloween 2014

Celebrated our 9 year wedding anniversary KID FREE in our own home and got to sleep in! :) Put up our new tree that Tim surprised me with and made homemade cauliflower pizzas and drank too much wine! It was awesome!

These 2 are VERY into playing 'camp out' in the family room. EVERY blanket and friend possible joins them! 

Daddy playing legos with Mr Naked legs 

Excited about his pumpkin behind him.

The boys celebrating Halloween at school with Ms Abby. (she is incredible and the boys even ask to go to school on the weekends LOL)

Snack time at the Halloween party with Ms Kelsey

Trick or Treat time 

Cousin Will, Cousin Ava, and the boys 

My mom dressed up like a clown and the kids went bonkers! 

Another 85 degree day in October so off to the park we went for lunch!

Looking forward to all that November brings!:)

Wednesday, October 8, 2014

1st Field Trip- off to the Pumpkin Patch

We lucked out with the boys starting school just in time for the 1st field trip of the year. Off to the pumpkin patch we went! That was an experience and really fun. They encourage parents to come if we want/can and I am glad i went. Riding the big school bus was an experience for the boys. Reid was scared and Preston hopped right on. No surprise from either of them. Drop off was the normal time and then we were invited to stay to watch morning routine before leaving on the field trip. Glad I got to see what they normally do to start their day. Preston wasn't thrilled to follow along knowing I was there and Reid totally ignored me. LOL Their teacher is phenominal. I am impressed. And Reid has found a particular liking to Ms Kelsey (one of the Para's) and he is sitting next to her. He also invited her to our house. I love kids! She really connects with him. He chose to sit next to her on the bus ride home instead of sitting with me and P. So i got extra special time with my little lovie and that was nice. Making up for some lost time is how I always look at any one on one time I get with P! 

Singing songs after open play. 
Cute video I recorded for Tim so he could see the type of songs they do. I missed getting the 'hello, goodmorning, and say hi to our friends' song- super cute!

Holding Ms Abby's hand and wore their backpacks to hold their pumpkins

All strapped in ready to ride the bus

Sitting on a hay bail to ride the tractor to the patch

The boys found their pumkins. Reid got the 'big daddy' pumpkin and Preston got the 'baby' pumpkin as they called them. FUN morning with my boys! 

Tuesday, October 7, 2014

1st day of Preschool

We have the 1st day of Preschool under our belt. It went GREAT! The boys are happy and enjoying it so far. Tim took a 1/2 day and came for the drop off and then we headed to breakfast together and got in a nice walk before he headed to work and I went back to pick them up. We toasted with coffee to 'WE DID IT!' We finally arrived to a place we longed for 3 years ago. NORMALCY! If there is such a thing :)  We are impressed with their teacher Ms Abby and all of the services Preston will receive are fantastic. Wonderful educators and we feel fortunate Tim works in a school district that offers such top notch services that our child is able to take advanage of at such an early age. The Audiologist has already emailed me about P's hearing aid and she is so glad he wears it and we have all back up supplies in his backpack daily. The miraculous part of the morning was........NO tears from any of us (i did have a few tears on Sunday in anticipation of the 1st day but they were happy tears- feels so wonderful to be in a healthy place with Preston. He deserves it more than anything!) and the boys ran right to their room and the rest is history. 

We weren't camera ready but I wanted a pic with my boys on their first day! 

This picture is brought to you by bribery of animal crackers at 8am ;) 

Ms Abby and the boys
Cheers to 'WE DID IT' - a new journey feels GREAT! 

Thursday, October 2, 2014

A new lease on life and so many firsts to celebrate!

SO many firsts in the Walker household these past few weeks. We experienced our first church service without the boys in tow. They went to sunday school. That felt weird leaving P and I had to remind myself that he is just fine :) Hard to let go at first. He was a happy camper playing and didn't care that we left. That helped! Now we are no longer feeling weird and we are cherishing the FREEDOM. Went to a gala event and had Tim's folks and Auntie Kim stay with the boys. TOTALLY AWESOME we didn't have to miss out on such an amazing night b/c we weren't able to have a night nurse. Preston got to spend the night at my parents house for the 1st time. Its still hard for us to wrap our brains around the fact that he is HEALED. Totally 100% healed and able to do ALL things he should be doing at his age. Its a TOTAL gift.  We are thankful for this new lease on life. Bath time is a blast. Still cautious until his neck is closed for good. We still rely on the video monitor a lot but let me tell you, brother bear has found his voice. He is a screamer. LOL Yikes! LOVES to hear himself jibber jabber and make noise! We love it. He is LOVING to get HIS turn finally at many things! First speech appt with Kay for her to guide us in developing words was wonderful. We have a bit of a road ahead with speech but I truly believe words will start to form and his language will explode once he is in school with other kids and they work with him daily.  First trip to the dr to get flu shots and SHOW OFF HIS NAKED NECK. The nurse who always sees us had big tears when she saw P. She had no idea he was decannulated. His doctors were SO excited to see him! His proud smile and pointing to his neck and signing 'all gone' to them was priceless. Now we need to see his KU Med nurses to make the decannulation come full circle. 

Now for a reality check I wasn't ready for. I knew it was coming. I thought I was prepared……not as much as I had hoped. First full week without Jessica everyday 7-4. Man was I spoiled! We still talked every day or in the evening LOL I am finding new common ground with parenting the boys on my own most of the week. Its SO rewarding but SO exhausting. I am just glad school is around the corner to help burn off their energy. 

Anyone ever feel like they are VERY busy but not getting much accomplished? Well, that sums up my week with the boys. We crammed in hair cuts, flu shots (that dr appt was when it really hit me how wonderful it was to have Jess's 2nd set of hands all the time), a dr appt for myself today (i won't go into details about me locking my keys in the car at ku med at 8am with the boys in tow this morning….i felt like Ralphie in a Christmas Story…..Fuuuuuuuuuuudge….once i realized what i did), a few play dates with Grandparents, and time with Ms Jess when she was here to watch the boys for me and do her usual stuff around the house to help me out tremendously. Even when I was supposed to be working, I was filling out Preston's evaluation paperwork for school, Reid's peer model paperwork, and catching up on so much stuff that has been piling up since we got home. So very strange not having Jessica here with us daily. Not trying to beat a dead horse but man I miss her. We all do. It has been a daily effort on my end to find a new routine and I think it will all start to jive once the boys start school Monday. We meet their teacher tomorrow. I am praying she is a great fit!

Bath time at Grandma and Grandpa's 

Night out at the Hope Gala 

Off to the Zoo (having no suction bag in tow was AWESOME!!!

In the car off to Grandma and Grandpa's for his first overnight. He was SO excited! 

GO ROYALS! Thanks Auntie Kim for the stylin' shirts

Friday, September 12, 2014

Home, Happy, and Healthy

We are HOME and settled already for the most part. The flight home was a bit of a mess but that is a thing of the past. Let's just say due to weather and a flight delay, I ran a 5K with a stroller thru Ohare to make my connecting flight at 10pm at night. FUN TIME! Tim has been nominated to fly Preston out for his follow up scope in approx 6 weeks. I am D.O.N.E. with traveling for awhile. :)

My mom brought Reid over to the house yesterday to see Preston and get settled back home. Well, I am sure if i had recorded it, it wouldn't have played out the way it did. Reid took one look at Preston as soon as he got out of his carseat in the driveway and said "Hi Brudder!" Preston in his scratchy whispery voice said "Hiiiiiiiii" with big smiles and Reid yelped and said "I HEAR HIM MOMMY! HE TALKED TO ME!" and then he looked at Preston and said "I MISSED YOU BRUDDER." My mom, Jess, and I all started to cry. Reid has since been telling EVERYONE who comes over or while we are out running errands, "Brudder's trach is out and he talks to me now!"  My heart is forever 1/2 melted away! ;) 

Preston's closet and our whole house has been stripped of supplies (they are packaged up and ready to donate to my good friend Kelley for her little girl Kaydence). We are keeping the pulosx and nebulizer since we own them. Will be good to have for the future. My stroller, car, and his nursery are ambu bag FREE. I have never been happier to clean and weed out drawers, shelves, and closets! 

Today was the first time in 2 1/2 years I went to a gym and took the boys to the kids play room while I did a pilates class. I can't even describe the feeling. Our drop off at Preschool on Oct 6th is next on the list!

Tonight is our last night shift for Preston and Amy is coming at 5pm to spend the whole evening with P while we take Reid out for pizza to spend alone time with him. It will be bittersweet. He still gets nursing care for the next 10 days and we plan to pull the g-tube out once he has his follow up scope. 

LIFE IS GOOD! We are ready to find a new routine with transitioning Jessica from day nurse to nanny, preschool 4 days a week in the a.m. and diving head first into speech for Preston once school starts. They get to be part of the Blue Valley preschool program (Reid will be  peer model) where an OT, PT, and speech therapist will be in their classroom DAILY so I pray Preston's speech starts exploding! Its already off to a great start. He has a VERY quiet voice and its a bit raspy but that will improve a little. I will take any noise - he LOVES hearing himself! 

THANK YOU AGAIN to all of our family and friends who have loved us unconditionally, supported every decision we had to make, and celebrated this new start with us! Can't wait for our big party coming up! We are so fortunate! 

Tuesday, September 9, 2014

1 day till we go home!

Just a quick update. We are discharged and hanging out at the Hampton Inn in KY. Lots of walking to kill time and watching trains go by and off to the Zoo today with friends. I just love that one of my mk consultants lives an hour and 1/2 from here (she has a 3 year old and 1 year old) so she offered to come here and pick us up and I was able to get us zoo passes! SO FUN! Thank you Nancy for making our Tuesday fun filled. I appreciate you coming here for us! 

Tomorrow we pack up, head to the hospital for one last scope at 11am of P's airway in O.R. We fly home tomorrow night at 8pm. We have to come back in about 6 weeks for a follow up scope. I am so EAGER to get home. I miss Reid terribly and everyone is dying to see and HEAR Preston. It will be so fun this weekend being home with more noise in our household and watch the boys interact. 

Prayers for a successful scope tomorrow and safe flight home would be wonderful! In some crazy way, I feel like we are starting a new life. It feels so incredibly awesome. I had yet to shed a tear but yesterday when I left for a walk with Preston and didn't have to worry about a suction bag and took in the gorgeous view of the river, it hit me like a ton of bricks. This is it. We are DONE. Its OVER. Our prayers have been answered. Makes me emotional typing this. I get to fly home with my healthy and happy little boy who deserves this fresh start more than anyone I know. THANK YOU JESUS!

Saturday, September 6, 2014

Trach FREE for P

I have so much I could say but I am ready to relax after today's event and I want to spend my evening with Tim before he leaves tomorrow :( Preston is doing fantastic. Today was AMAZING! We are living a testimony of God's faithfulness thru the ups and downs of life. We never lost sight of His plan for our son and family. I have 2 healthy, happy, smart, ornery, energetic, loving, tender boys and I can't ask for more than that. When I think how far Preston has come from a fragile newly trached 8 week old to today, I am humbled. I feel honored that I got to experience such a highly rewarding parenting and life experience with him. Tim and I look forward to our 'new normal' in the next step on our journey of being Trach FREE for P! God is GOOD! 

Friday, September 5, 2014

Tomorrow is D day!

Preston rocked his capping trial! He was off monitors all day since his breathing has been perfect. We called Tim on his way to work this morning Preston said Hi Dada and a few other whispers of 'words.' This is all so exciting! He is loving hearing himself giggle. We have the orders and decannulation will be happening tomorrow! Its finally official. Tim is in route on the plane as I type this. I still can't believe this is happening. We are becoming a bit bored after being in the same room for 2 straight days. It will be awesome to celebrate tomorrow and have Tim here all day tomorrow and Sunday. He has to get an IV tonight (i am dreading this b/c he is a hard stick) but must have for it decannulation. They need immediate access incase of emergency.

We had fun today making videos of Preston saying HI and being able to hear himself breathe. He is pretty proud of himself. We also got to take a little field trip to the gift shop and walk a little bit. My heart is SO FULL tonight! Reid had a day of fun with my sister and Ava while Will was at school. He is obsessed with their sweet kitty, Willis, and had fun getting to do drop off at school this morning. My in-laws have him for the weekend and I am just so thankful he is a secure little boy who hasn't once asked for me or cried about me being gone. He is being spoiled! :) I certainly wouldn't be crying for me if I was getting all of the attention and goodies he is receiving!!

We plan to take video tomorrow of his decannulation so he can watch it when he is older. I pray it is uneventful and he is stress free and doesn't panic. We have prayed and DREAMED of this day for years and Tim and i can't even believe this trip to Cincinnati marks the end of a LONG journey! It took us by total surprise! SO many wonderful things have come from Preston being trached and it also brought a lot of heart ache, stress, questioning, and anger at times. I wouldn't trade any of it for the GOOD that came from it.

The highlight will be posting pics of my little man's NAKED NECK and a video of his decannulation!
Thank you thank you thank you to each and everyone of you for sticking by our side! The t-shirt pictures have been my favorite part of the end to this journey- SO FUN seeing everyone wear them to support us. Preston will be sporting his tomorrow for obvious reasons! ;-)

Thursday, September 4, 2014

A glimpse of reality!

Today has been the best day and he hasn't even been decannulated yet! 

This prayer from Reid the other day was heard LOUD AND CLEAR! Now when Reid says, "Talk to me brudder, please talk to me!" (broke my heart the first time I heard him say that). As of today, there will finally be that chance for Preston to speak. Praise God! 

Where do I start- Capping has been 110% successful. Dr just rounded on him and plans to take out the trach are set for Saturday.  They even throw a party on the floor for him. I love this place! The nurses are just as excited as I am. Tim flies out tomorrow night (i am beyond excited about this). This will also help transition us from RMH to hotel this weekend. My in-laws and sister in-law have Reid all weekend. I have to admit that I haven't had a moment to miss him much with all of the hustle and bustle here with things moving so fast for Preston. I can't wait to see Reid's reaction to Preston when he sees his trach is gone. They play a game called 'Trach change' and they both lay on the floor and we pretend to change P's trach (like we normally do) and then Reid lays down and we tickle his neck and he loves it. I never wanted Reid to feel left out with all of P's trach cares so we made him apart of everything from day one and now they have made a game out of it. 

My folks get back in town next week to keep Reid till I get home. I am thankful for technology so I could face time with Tim and have him be apart of the capping this morning. Preston is sating 98/99 and has no strider, no retracting, no laboring of any sort. We are on our way to TRACH FREE FOR P. My shirt has a whole new meaning to me :)

Here is a glimpse of our new normal. I got to hear him laugh for the first time- a REAL out loud laugh today. First sneeze was funny and first cry was shocking. It just dawned on me today that I will fly home next week with my little man being apart of the NAKED NECK CLUB. He will sport his adorable tan line on his neck. No more strangers staring at his neck or asking me about it (you would be amazed at the balls some people have)…..especially while traveling. The suction bag celebration is next- that thing is going somewhere FAR FAR AWAY! LOL We can remove the ambu bags from our strollers and cars and his room. Bath time will be SO MUCH FUN - my boys don't even realize you can fill the tub past their little hips and actually splash! Swimming next summer will be in full effect. The list goes on and on. 

The hardest part will be saying bye to our nurses. That will be a post for another day. I don't want to rain on such a wonderful parade today. Our nurses have become family to us. I may need to increase my zoloft for that transition LOL LOL The boys start preschool in October and I DREAMED of them going to school with Preston trach free. No more Jessica going with him everywhere. I will drop them off and they will be on their own and not a worry in the world about his health/emergency situation will be on the fore front of my mind. Church is at the top of our list and we already have one picked out to try with dear friends who also have twins. 

Here is what we did today! 

Our RT is awesome and put this fun play mat on the floor for him (he has been on it ALL day) because he has to stay on monitors 24/7 to ensure his sats don't drop while being capped. He passed out this morning after a busy morning of learning to breath 100% on his own. 

Eating a grilled cheese (he has had 4 of these since arriving) and sporting his fun fireman hat from Kelley and Kaydence.  We had a FUN visit from my dear friend Kelley (who i met last summer at RMH)- they came to Cincy for a dr appt for Kaydence and brought me a sub sandwich. REAL FOOD was heaven and the company was even better! I also had the thrill of giving her all of our trach supplies they can use! No more suction caths, hme's, or trach ties. I have 3 huge boxes for her at home that I plan to give her too! FEELS SO GOOD! 

fun mail we got from a dear high school friend (who is also a mom to multiples)

Eating like a king before we capped him

Up close pic of him napping- was zonked by 11am

Playing tonight before we watch Cars at bedtime 

Wish us luck on capping day #2 tomorrow. Prayers for Tim's safe travels and no hiccups would mean a lot to us! May the day we have awaited since Preston was 8 weeks old get here quickly.