Thursday, May 28, 2015

8 month follow up in the books!

8 months later and trach free, we have great news! Preston's airway looks P.E.R.F.E.C.T- words I never thought we would hear. Seems surreal. Follow up with Dr Rutter for airway is in 1 year! He was very pleased with how P looks! Hip Hip Hooray! :) His stoma is completely closed and we got the green light to SWIM! Another celebration! 

Now for the 'questionable' news. We requested Pulmonology to be apart of this scope b/c Preston has a nagging cough he can't seem to kick. With a week long ICU stay this winter and another 1 night return inpatient stay for various reasons and a new cocktail of meds that seem to be helping, we just can't pin point what is going on and needed answers to our questions. SO GLAD we had Dr Benscoter do a flexed bronch and lavash (washing of the lungs) on Preston. He found a milky white substance in his lungs that is not normal or anything they have ever seen with P before. This could explain the cough and illness! Labs were sent off and we are very anxious to hear what comes back. The hope is an antibiotic will be the answer! Possibly another swallow study. Stinks that no matter what comes back, we have to go back to Cincy in a few months for a follow up scope with Dr. B :( SO bummed about that. Sure feels good though for ENT to now be at the mercy of what Pulmonology wants to do instead of the other way around. Pretty awesome! 

On our drive home, I contacted Dr Andrews (P's plastic surgeon) and he will be doing the scar revision surgery on Aug 6th and a few touch ups on P's ear. We will start a new school year with a new neck and 'perfect' ears for Preston and a whole new vocabulary (words are flying out by the minute and now sentences.....thank you God!!!). 

I have to say the road trip to Cincy and back in 2 short days was actually really fun. Tim and I didn't realize how much we needed the uninterrupted time to catch up and talk about everything under the sun and just enjoy each others company. We relish in the time we have with each of the boys one on one. Preston is SO DARN EASY and it was a dream come true for him to get to sit for 10 hrs and watch movies. LOL Lord knows this is not Reid's desire so we are thankful God gave Preston this personality for all of the travel we have needed to do with him. He tolerates all of it so well. Only asked to go home once and shed a few tears for Reid on the way home (must have forgotten the slight push Reid gave him on our stairs the day prior). It wouldn't have been a trip to Cincy without a stop to our fav ice cream shop, Graeters! We also bought 2 pieces of art in a local downtown shop (done by a local artist) to remember our time in a city that has so much meaning to our life. 

Its been a LOOONG 3 1/2 years and we finally see the VERY end of the road in sight. Now if we can just get to the bottom of this cough and find out what is in his lungs, we are all set! 

THANK YOU THANK YOU THANK YOU for everyone's prayers, well wishes, and unconditional love and support on this journey! It hasn't been easy but it sure has been worth it. Your loyalty to us is what sustained us all along! We appreciate you!!!!

Saturday, May 16, 2015

8 months Trach Free

Still seems like yesterday we were pinching ourselves seeing Preston's naked neck. I can't believe its been 8 months. The boys 1st year of Preschool is coming to an end this week. Preston is TALKING like crazy! He is saying several new words DAILY! We head back to Cincy on Memorial Day for Preston's follow up scope to see how his airway looks. Unfortunately, this winter was not fun. P had a week long stay in the ICU and another night inpatient a month later for several reasons. He is now on a new med plan that seems to be doing wonders for him thanks to his NEW Dr at KU who who is now the boys pediatrician and specializes in asthma/cf/other breathing complications. He has been life changing for us and we believe he will help keep P out of the hospital to catch any sickies SUPER fast with meds asap and has really taught us specific signs/symptons to be on the lookout when Preston starts to get sick. We were so used to how P sounded WITH a trach and now we have learned how he sounds WITHOUT it and its been a learning curve we didn't anticipate. Things are looking up which is great! I am savoring every minute of this age yet its been the most challenging in some ways. It has also been the easiest in other ways. I imagine this will be the case with each age! Regardless, I am reminding myself this is going all too fast and we plan to have a fun summer with lots of activities before school starts back up.

Please pray for us if you don't mind. Safe travels, easy stay at RMH, and a successful O.R. visit for P would be appreciated. We plan to contact Dr Andrews (P's plastic surgeon) while traveling home to get him on the surgery schedule ASAP for his neck revision so he can swim safely this summer! Fingers crossed this can happen very soon! I am ready for every step of this 'trach journey' to get behind us and have 100% closure.


Here is picture of the boys before our fun date recently with our friends the McNeils at Cosmic Jump and Jason's Deli for dinner. They are growing so fast and are officially ready for summer with their shorter haircuts!


Sunday, February 22, 2015

2015 is flying by!

I realized the other day I never did a Christmas/New Year post and now i can't believe March is around the corner. 2015 is flying by! I am thankful we didn't spend the day after Christmas this year in the hospital like we did the past 2 years with Preston. I have no regrets with doing his past plastic surgeries on his ear when we did them……he doesn't remember any of it and this year was a FUN and MAGICAL Christmas with Santa and gifts so I would have been crushed if we had decided to take him in for another surgery. Instead, we have elected to have Preston's final ear surgery at the same time he will have his neck revision. Kinda stinks it will be right before the weekend Spring Break starts but Tim will be home and he will have plenty of time to heal. Words cannot express how Tim and I feel about this surgery. We are BEYOND excited for his stoma (hole in his neck) to be officially closed! In 17 days to be exact. This means he can swim this summer for the first time (going under water will be HUGE for him) and bath time can be 100% FUN with splashing and washing/rinsing his hair like normal. The part I am most excited about is the cosmetic piece to this surgery. Dr Andrews is P's plastic surgeon and he is phenomenal at what he does. He is going to make Preston's neck look as if nothing ever happened. He deserves this SO MUCH!

We have seen some major break thru's with P's speech in the last 3 weeks! It has been really exciting! Preston's teacher even caught some of his first words on video at school for me. I was so grateful. He has started saying a few words that are crystal clear or pretty darn close. The best part of all is that he is trying to say everything even if it doesn't sound like it should. It will come! His speech therapy at school has made all of the difference and we are grateful he could be in the early education program in BV. We are still actively signing and it continues to prove to be a huge help in letting us know what Preston needs and wants and he is learning more signs each week. I have to brag on the boys preschool teacher because if it weren't for her, our experience with school would not be anywhere near what it is. She has taken it upon herself to teach the whole class sign so Preston could communicate with his peers. How do you thank someone for this incredible gift.

I am including this sweet story so I never forget it (feel free to skip or read and enjoy). Preston has a friend at school named Marianna. He REALLY REALLY likes her. We have a sign for each friends name at school so he can talk about all of his friends. Marianna is signed a lot in our house when we talk about school. Well I had no idea that Marianna's brother, Jacob, always walks her into school each morning and Preston really likes Jacob. I got a text in the morning a few weeks ago from Miss Abby (their teacher) with a video of Preston saying HI JACOB all on his own. Abby about fell over and had to share with me. Enjoy this video below.  I had tears rolling down my cheeks and appreciate her capturing this for me. Later that week, Marianna's mom approached me at pick up and wanted me to know that Preston knows Jacob's name (she didn't know I saw a video) and wanted me to know how much Jacob LOVES having Preston acknowledge him in the mornings and say hi to him and speak his name. Miss Abby said she truly believes this is a huge reason why Jacob comes in their classroom every morning. My heart just melts and I never thought our experiences at school would be like this one. Pretty special :)

video


Preston is also very much in love with 2 things. His teachers baby, Lyla, and her doggie, Gracie. They discuss them daily at school and have signs for them. This kid just cracks me up! Here is a video of Preston saying Baby Lyla (the first word that he said crystal clear!).  It doesn't get much better than this sweet voice!

video
I am always updating about Preston so I must mention Reid. He is my little leader and loves school so much. He is a huge help with signing and communicating with Preston. They are the best of friends and the worst of enemies. Tim and I have noticed how great they play together at this age 90% of the time. They do things at school together for certain things (like circle time) but then are completely independent from each other otherwise. They have very different interests but seem to find a way to incorporate those together. Very twinish at times. We have decided to keep them together next year because signing is still a huge piece of our life for Preston's communication and Reid is gaining so much from this. We know he would not get this in other classrooms. They will be in separate rooms the year before they enter Kindergarten. We feel great about this decision and we really can't imagine our boys having any other teacher than Miss Abby.

We have also enjoyed playing in the snow, church and lunch with GG, celebrating my Mom's 66th Birthday, Auntie Kim spoiling the boys on V-day with a trip to Build-A-Bear, and lots of time at the park with the unusually warm weather we've had. Here are pics to recap these past few months!



Loving the warmer weather for walks to the park!


A moment that I had to blink twice……the house was quiet and knew the boys were in Reid's room so i turned on the video monitor to spy on them and found Reid reading to Preston. Pretty sweet! 

Special visit from Mama Amy and Blake delivering V-day gifts!

Our 13th Valentines Day together! Fun night out to the Bristol and shopping - thanks Auntie Kim, Grandpa and Nana for spending the evening with the boys! 


Leo and Lorna Bear (still makes me crack up that he named his bear that)
Preston being goofy at lunch with GG

Happy Birthday to a woman who was made to be a Grandma