It is hard to believe that a little over a year has passed since our little guy came tumbling into our world a solid month before we expected him too! I year ago today was when were were headed home completely unaware of what the future would hold... This weekend we will be celebrating Eli's first birthday! We will be at the Sports Arena in Bangor on Sunday the 25th from 3-5. It's an open invitation for anyone who wants to stop by, eat a slice of pizza, bowl a couple strings and say hello to our little trooper! We'd love to see the house packed!
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!
Unbelievable! We absolutely never would have expected to reach $10,000! While the future offers many uncertainties, knowing that we have this financial cushion gives us a level of peace that we find incredibly comforting.
You are amazing and we are so incredibly thankful for each and every one of you!!!
We found out that Eli is evenore special than we though! He has a type 3 Laryngeal Cleft. (There are only 2 children in the world right now with type 4's.)
He got his Mic-key button (second picture) so no more tube in the nose!
The best news is that we are coming home within a week! (I think... they really hate giving definitive timelines.) We will return in a month after he bulks up a bit and start the repairs sometime this spring! (Considering the size it will probably need to be done in stages.)
There is a long rode ahead but as soon as we get his feedings under controle we will be back home, close to you all, and that will be absolutely splendid!
An hour after we created this page we reached our goal... We have been floored by your generosity. Our living expenses have been more than met and the extra is an amazing blessing that we will be able to apply towards the exponentially growing medical bills!
Hopefully the attached video will express even a tenth of our gratitude!
Several people have reached out and offered to give or raise funds for us. While the offers were extremely thoughtful and generous we have been hesitant to accept help up to this point. We have very loving and generous family and friends who have been beyond amazing. That being said, Boston is expensive!
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!