Moving Right Along.......

It has been 5 weeks since Reese finished up the feeding clinic and things are going well at home. Days are long and and can be very trying at times with feeding being the main goal each day! Reese starts her oral feeding @ 8:30 am and most mornings are tough. Reese struggles to wake up and eat almost immediately as some if not most of us do ourselves. Timing is key for Reese and her schedule.....
This week we increased her bites to 22 bites per meal and most meals are successful! She is catching on that mommy might know a little more than she does. She impresses me most times but tests my patients too! John can attest to that statement! So for now she is accepting 22 bites and still taking approx 11 different foods such as pudding, yogurt, carrots, broccoli, sweet potatoes, etc and need I mention, she still DISLIKES the eggs!
Her weight seems to be increasing, not sure of her exact weight gain but looks very healthy!

Keep working hard Reese! We're with you every step of the way!
love,
mommy, daddy, nicholas & mason

Reese is talking so much these days! She makes me laugh and forget how hard thing can be at times!

Transitioning At Home!

Well, It has been 2 weeks since we ended the feeding program at Chop and things are going well! Reese left the clinic eating eleven different foods and taking 20 bites per meal. Reese is taking 60 - 80 bites per day..... All the foods are pureed and must be a SMOOTH texture or she'll let you know either by refusing the bite or vomiting after taking it in. Eggs and broccoli seem to be her toughest foods to handle. They both start out smooth and form a texture by the middle of the meal.

Reese eats @ 8:30 am, 11:30am & 2:30 pm oral feedings. Her tube feeding are 9:30 am, 12:30 pm & 3:30 pm. somewhere in between she must get her therapies and a nap in. Basically this is our whole day........ Though it consumes most if not all of my day, it is only until she learns to eat. Reese will continue down this path for approx 6 months to a year and will be followed by the doctors at Chop.

She is doing great and I will give her all of my time and for however long it takes! We are so very proud of her and know each day she continues to accept is a brighter day at the Domico house!

Keep fighting chick a pea! We love you very much!

Three Days And Counting.......

Today, Thursday May 7th I (mom) was back at Chop to continue the feeding sessions. The first meal seems to be the toughest of all three! I want to believe that Reese struggles in the morning from overnight post nausea/seasonal allergy, something like that. Reese always seems to have a cough that usually makes her lose some if not all of her feeding. We were down to the last bite and just when Reese would let me know her mouth was empty. She coughed and lost most of her feeding. It only takes a cough or gag and it usually does not end good...... We are making progress with minimal gages! With more and more practice, this will decrease.
After the second meal, we were told to go home and do the third meal at home! We left the hospital QUICKLY and on our way we went. At home, the feeding went well! Reese took 20 bites total, which included sweet potatoes, applesauce, broccoli/cheese & yogurt. It is so good to see her want to eat! We are working on holding a spoon and she can do it but chooses not to most times.... I'm OK with this as long as we continue to make progress with the bites and holding it down......
Back to the hospital tomorrow for lunch only!

Your doing GREAT SWEETIE! We love you! 

Dad In Training........Sweet Potatoes & Peaches!

On Tuesday & Wednesday , mom was home and dad will be training. Reese is now up to 20 bites and some new foods have been introduced. We are starting sweet potatoes and peaches today. Both seem to be on the PREFERRED list of foods. Foods that Reese likes! It is very little but something new! New means more variaty and more bites!

These past two days went good and Reese enjoyed her time with dad!

Mom Starts To Feed and Reese Is NOT Happy!

Well, It has been a few days and things didn't go as planned..... On Thursday morning I (mom) was going into the room along with Love & Reese to join in the feed sessions. For starters anyone who has a 2 1/2 year old knows they have a mind of their own. Reese finally caught on that I was in on this whole feeding thing and decided she was no longer going to cooperate! As we went into this very small room where usually it is only the feeder and Reese. Reese had no idea what was going on at this point but knew she did not like the way things were going...... Love would begin to feed Reese and there was much effort in trying to keep her calm with the change in routine. Though the session started out rough, Reese turned it around and calmed herself approx 10 bites into the session. I than took over the feeding for the last 6 bites. It did not go well at all........ I wanted to leave for the day at this point! Surprisingly the second feeding went well and I was able to get more bites in and by the third feeding I was doing half the meal. I could tell Reese still was unsure of how things were unfolding.
Let me explain what was told to me. A child who can not eat for whatever reason (in Reese's case from birth not exactly sure the reason) and is now learning how to eat, the meals need to be very STRUCTURED. By changing the entire routine with me in the room is very upsetting to Reese.

Please know that Reese does not know how to eat and is learning. This is not something that will JUST CLICK. Children with feeding disorders and cannot eat is totally different than children who will only eat certain foods, brands, textures, etc... A child who cannot eat for various(medical) reasons will not eventually eat when he/she is hungry. This never happens......

This past two and half years have been very exhausting for our entire family. We are committed to getting our daughter to eat and we believe this time we will succeed. Reese has shown us great progress in just 3 weeks. Though is is going to be a long road before the tube is removed. We continue to have faith and know Reese will get there!

Thank you everyone for all your support! Reese will know someday she was not alone in this journey.

We love you and thank you for your continued support!

xo, xo
The Domico's

PB & J and Taking 18 bites per meal!

Today is Wednesday April 29th and yes Reese liked the PB&J! She did great and Love(feeder) thought it was OK to increase her bites per meal to 18. Things went well today! Tomorrow will be day one of parent training! Not sure how this will go, but we are ready!!! Let's get started and bring this program home. Chop is getting to be a familiar place for Reese. She says HI to EVERYONE in the hospital, on the elevators, Au Bon Pain(sandwich place) & the parking garage........ Oh let me mention everyday we leave the hospital and enter the parking garage, Reese yells out to hear her voice echo and she laughs. She likes to hear herself and how it sounds! Smart little girl!
Reese we cannot wait for you to eat with us at the dinner table! Here is something your brothers wrote to you on the chalk board in the kitchen! We Love you! M&D- N&M

Hotdogs & Beans YUM!

Today is Tuesday April 28th, Reese has gained 1/2 lb since she has started the feeding clinic. Yeah! Gaining weight is always good! She is moving right along and today in her second meal she had hot dogs and beans. Broccoli & cheese looks better pureed than beans & franks! It's all in the taste for Reese. She liked it! She did know it was a change, but was OK with it.....
Reese is up to 16 bites per meal which equals out to approx 2-3 ounces.

We had out family meeting today and talked about the progress.....The feeder take notes after each bite. Notes are taken on acceptance, expels (letting the food fall out of mouth) disruptions(anything that Reese does to try and get attention) gagging, coughing and clean mouth after each bite. All this information is then part on a graph to show the progress. There were days that went up and down. Most of these days involved the eggs! Though Reese is making steps in the right direction, it is slow(all foods need to be pureed) We are OK with this because it is more then what she was doing before this program. This process may take up to 1 year before she can eat age appropriate.

We are dedicated to making this work this time!
Tomorrow is PB&J!!!!!