We have taken 3 weeks off from Cecily's Closet to focus on family. After spending most of the year trying to ensure other families and children with special needs received extra doses of love and support we gave our board of directors and our amazing, dedicated and passionate volunteers a much needed rest so we could be sure to fire up strong for 2014- AND to ensure that our family could focus on our children during this magical time of year.
After a lot of thought and consideration Brien and I decided to participate in a 3-week intensive feeding program at CHOC - Children's Hospital of Orange County. Cecily received her g-tube on Christmas Eve 2009 and it seemed only fitting that four years later we spend the holidays at the hospital to do EVERYTHING possible to try and wean Cecily from her dependence on her g-tube and increase her eating by mouth.
For years - 4 years - we have tried everything to increase Cecily's oral intake. We purchased products, we tried multiple therapists and strategies and we provided Cecily with the love, support and care that all children need to thrive. We decided that we had to give this well recognized program a shot because of the rave reviews we had heard!
We were ecstatic when Cecily was accepted in July and slightly daunted by the "to do" list the hospital provided us. In July, Cecily was on continuous feeds and was only fed medical food. We switched her to bolus (pushed g-tube feeds), abandoned the feeding pump, introduced her to a real food, blended diet and eliminated night-time feeds in 5 months. This may seem like a long time but that was a lot of change and a massive amount of work for us and Cecily. The final journey was to stay for 3 weeks in-patient and try their program.
I kept a daily journal and for those families considering this stay I would be happy to share it. It is intense and we were not sure we were going to make it. I am not afraid of hard-work but it is just an emotional journey full of ups and downs and twists and turns and highs and lows and self-discovery for not just me but for Cecily, too.
Before I go on I must say that in those 3 weeks I developed lasting connections with the team at CHOC. I will forever be in their debt. They taught me so much in that short time and they provided the constant love, support and dedication required to take a family on this journey. (And it is a journey!) We had a team of 16 people at times helping us! It was amazing. We have a lot of support from family and friends but this group of strangers embraced us (and the challenge we presented) with open arms and gave us the strength to make it through the end. This program has managed to get eradicate the need for g-tubes for 90% of the children who participate. A stunning statistic.
Our goals were different. We wanted to make meal-times less a battle and more fun. We wanted to learn how to manage Cecily and make life easier for our two sons so eating could return to a social, family engagement and not a battle of "get Cecily to eat"... and we wanted to improve her oral motor skills so one day we would be g-tube free.
Amazingly enough... we accomplished all of our goals and MORE! Cecily exited the program eating 900 calories by mouth and decreased her dependence on the g-tube by 80% while maintaining her weight! But Cecily's progress during the stay can't be measured by what she ate, her weight on the scale or calories ingested.
We experienced a Christmas miracle!
Cecily is our angel, our flower, our gift. She developed her wings and bloomed and we are continuing to unwrap the present that she is! She found her voice during the hospital and she (for the first time ever) used expressive language! Her parroting skills also improved - ie. her willingness to say new words and repeat sounds when set to music or a drum-beat. She engaged with me in ways I have only dreamed of and she emerged from the program a more independent child.
We had hopes we could get her to drink more fluids. Cecily had other ideas. After week one being devoted to pureed everything - meatloaf, turkey, bacon, spaghetti, yogurt etc. etc. Cecily decided she wanted "real" non-mashed, non-blended food. She began to pick up food herself and put it in her mouth. She started to chew! (baby bites and baby chews but she was doing it!) She let me put all types of food in her mouth (warm, cold, crunchy, soft, hard, etc. etc.). She understood the concept of chomping and she was only too willing to try. She experimented with EVERY type of food we put before her. She was not always willing to eat... but we could get her to pick it up, kiss it or lick it. In some cases she would even take 1 bite before deciding "no" she did not want it.
The tools and techniques that the team taught us were amazing. They were magic. (only they required a lot of hard-work and practice, practice, practice.) I now see sweet Jen's face every time I buckle Cecily into her high-chair, oozing support and love and encouragement. (And yes, she is letting me put her in the chair... a feat that was not possible before this program). I see Audrey and her hands going chomp, chomp, chomp when I try and get Cecily to bite. I see Sarah when I use meal-times to engage Cecily with words and patterns and rhythms and touch to increase her speech. And I see Erin when things are headed south and her reassuring smiles. The entire team - I call them the DREAM TEAM - are nothing short of amazing and they have formed a lasting impression on my heart and my family. Cecily fell in love with them too and it was harder than I had expected to say goodbye. In fact, I wasn't sure I wanted to leave the warm, supportive cocoon they had provided for us. After all... Cecily was eating. Cecily was talking. Cecily was demonstrating choices and responding to directives. Cecily started to clean up after herself. Cecily began to draw ... and hold her pens in an OT approved position! She drew circles and hearts and chose colors with her words. She told me to stop and go and pick her up and go this way and that way and she was engaged with not just me but others, too. Would this fairy tale end if we left the building? I wasn't so sure I wanted to go but I desperately missed my boys - all 3 of them!
And so we headed home a stronger pair with a road map for success and the path to eating by mouth well paved. Our first few days home and have been full of highs and lows. She has tested me to see if we're really going to eat 6x a day (8/10/12/3/5/7)... and she has returned to some less liked behaviors. The difference is that MOST of the time I can remember the lessons I have been taught and I'm better able to handle her energy and redirect her in ways I never dreamed of.
CHOC has given us the tools to work with Cecily and we will forever be grateful. As we celebrated Christmas yesterday as a family it was a joy to see us ALL sitting around the table. No food fights. No screams. Just smiles and gratitude. Cecily sat and explored her plate and drank her milk and tasted and chewed and licked and kissed a lot of food. It wasn't her best eating day... but it was a million times better than anything we could have dreamed of before entering the program.
A huge thank you to our family and friends who helped support us on this journey and to the lovely people me met at CHOC. It is a life-changing event and one I'm sure I'll talk about more in the future.
For now as I go from room to room and see all of my angels sleeping I am just so grateful for the opportunity we had to go to CHOC and spend 3 weeks focused solely on Cecily. I felt bad for my boys but the investment we have made will only help Cecily engage with the boys and the boys engage with her for a lifetime. And that is truly the best present we could have ever hoped for!
Do you believe in miracles?
Onwards and upwards!