Baby Bustard takes on Boston
We have a third bronchoscopy on Monday which will give us a better idea of our timeline here, but I believe 2 weeks to be a conservative estimate at this point. The room only allows one of us to stay with Eli at night so we found a room 4 blocks from here for $30 a night. The refrigerator and cooking space is limited so we plan on spending about $20 a day on food and it costs $9 a day for parking. (This is discounted from $40+) that totals $59 per day for 14 days to total $826. (The site required that we enter a goal amount.)
While the total seems large, every little part helps! $5-$10 for a meal, $30 so one of us can sleep on a real bed! (Last night was the first time I did that in a month and it was so good!) or $9 so our car doesn't get impounded! Each and every dollar will be counted as a blessing!
Eli has turned into one of the happiest, smileyist, easy going kids ever! He is packing on the pounds and is finally on the weight charts!!! He is fully mobile and probably only days away from taking his first steps independently. He still uses his G-tube for the vast majority of his fluid intake but we are working on a plan to lower that at whatever rate Eli sets. There's really no way to tell when he will be able to take all foods or beverages orally of if there will be need for another surgery but we're certainly far beyond the days of "failure to thrive!"
I wish I could write about the incredible breakthroughs that we have had but those don't seem to be in the nature of his condition. As his doctor put it, learning to eat / drink for Eli is like learning to run a marathon, it just takes lots of time and practice.
Again, thank you all so much for laying the foundation for this past year! I can't imagine how much more difficult it would have been without you and I truly hope to see each and every one of you at his party on Sunday!!!
We seriously can't express how much we appreciate all of you and the support you gave us. The last 3 months have been drastically easier and much less stressful because of the financial foundation you gave us. Aside from Eli himself it was the greatest gift we've ever received!
For those of you who made the reasonable decision to block our excessive posts on Facebook or have not friend requested us (Please feel free to by the way!) Eli has been growing and developing seemingly without issue! He is full of smiles and giggles and getting stronger each and every day!
These last few months with him have been the best of our lives. We absolutely love our little family.
As I write this we are driving down to Boston for the first of three visits this month. Tomorrow is an appointment with the geneticist then two weekends from now is his pre-op appointment and the week after that he will have his first and hopefully only surgery!
Thanks to the connections we made through this site we will be flying down for the second and third trips through PALS with a volunteer pilot!
We are excited and nervous to reach this stage. Eli has been doing great with his G-tube but obviously it is not something we want him to need long term. While we are still waiting on the specifics of the procedure, we do know that it is not an immediate fix and will require at least a few more months past the operation before even attempting to eat regularly again. We have a long road ahead of us but we are as ready as we are ever going to be!
Thank you for your continual thoughts and prayers! Much love, Benjamin, Nicole, Chip and Eli!
For future travel to Boston, please contact Patient AirLift Services (PALS) for free air transportation from Bangor to Boston (and return). Please contact us at 1-888-818-1231. PALS provides free flights to those who qualify to their distant medical facilities with volunteer pilots. Maine patients are also given free ground transporation from the airport to hospital. See Patient AirLift Services on Facebook and at www.palservices.org. Please pass info forward to Baby Eli's family. annie beaulieu - (PALS)
Our daughter has a type 1 laryngeal cleft which took 18 months to diagnose. We know the boston hospitals well and you're in good hands. Wishing you the best of luck to recovery!
I'm sure it feels good to have a "game plan". Eli is very lucky to have such a loving family and wonderful friends. He is a beautiful little boy. Thank you for letting is share on your journey. You are all in our hearts every day.
Benjamin, Nicole and Baby Eli. We are all thinking of you and sending our prayers your way. Go Baby Eli!!!
Praying for you all!.what a beautiful family.GOD BLESS YOU ALL!
This story is so relatable to me. Two of my children have cystic fibrosis but weren't diagnosed until 1.4 years old. They were seven weeks premature and in and out of the hospital for the majority of the first three months of life AFTER the five weeks spent in Nicu after they were born.. I stayed in a Ronald McDonald house. Is there one near you? That could help with costs! And I can't believe they won't let both of you stay!!!!!god bless and stay strong. I know it's hard but that baby needs his parents happy and healthy!!! I'll b thinking of you and following your story as I lived in buck sport for a long time and my dad still does!! God bless!!
Baby Eli's story has captured the hearts of so many! The hope and love surrounding his journey has shone brightly in what would have been a very dark winter! Your bravery and gratitude are an inspiration for all!
Thinking of you all and pray that all goes well for baby Eli.
Your video is just the sweetest thank you. It made me cry (but in a good way). Godspeed you three!
I will keep my prayers of little Eli