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!!!!!

Begining Week #3 Broccoli & Cheese

Today is Monday April 27th and Reese started broccoli & cheese! Although it was pureed and didn't look pretty, Reese did extremely well! She accepted every bite with NO gagging, coughing and vomiting! This is huge! She seems to be handling all new foods really well! Not the eggs!!!!!!
Reese had an eye appt @ 7:30am and her eyes improved by 20%. Although Reese struggles in the sunlight, she has done really well these past few days in the sun(that is with her sun glasses on) We seem to be getting closer to what is somewhat of a normal life...... Starting to eat & being able to play outside with her brothers in the sun. Life is good!

We wanted to share with everyone that Aunt Mary is a proud GRANDMOM of a beautiful little girl Kelsey Layne (Tim & Meghan) born today weight 9lbs 9oz. We love you! Grandmom & Grandpop Mackey!!!!!! love, trish, john, nicholas, mason & reese

Two Down and Two To Go!

Today was Friday April, 24th and daddy took Reese to the feeding clinic. Dad reports Reese did terrific in all three meals eating the yogurt, pudding and applesauce like a champ! The cheese omelet was a rough start because the eggs were not made the correct way a little lumpy. Reese was not letting anyone pull anything over on her. By the second meal she did bounce back. Still the eggs are not a preferred food for Reese, she is accepting each bite.....

Dad and Reese did allot of bonding today! I know Reese loved that, not that she isn't the center of our universe here at home!

Reese, you are doing great!!!!! We look forward to another successful week and hopefully more variety of foods!

Day #7 Early Bird Today........

Today is Thursday April 23rd and Reese started her day @ 4:30 am! This was not going to be good....We arrive at CHOP every morning at 7:45am. We were sure to be on time today! Starting off with my cup of tea from the Connelly center. We went to the Seashore house to begin our first feeding @ 8:30am. I am still behind the glass watching at this point..... Reese seems to be handling herself well. Whenever the cheese omelet is offered she gives a look like you want me to eat this again! Hopefully that will pass soon..... From there we went back to the Connelly ctr to grab a private room to watch a DVD and hopefully get a few minutes of rest. Reese wasn't having that. We stayed around for story time but she wasn't having that either.....
By this time it was getting close to another feeding. The 11:30 am feeding went OK again. After that we had an appt with speech to evaluate Reese for skills on chewable and drinking from a cup. She was resistant at first but did come around (as she always does) Speech will be involved over the next two weeks with Reese. Speech helps with learning how to bite down when mashed or soft chewable are introduced. This will be some time before Reese reaches this point, but she will need to know how to do it before she can even try a more textured food such as mashed..... Did I mention I almost fell asleep during this evaluation. Reese finished her last session @ 2pm and off to an appointment with Pulmonary. So we left Chop today @ 4:10. Who says it's easier to be a stay at home mom?
Daddy is going with Reese tomorrow.........

Day #6 Cheese Omelet!

Today is Wednesday April 22nd. First feeding starts out with the basics....yogurt, pudding & applesauce. Her feedings are looking more like home. Loosing interest in trying to be a big girl and did it herself. The self feeding is becoming more of an effort, but with help she continues to accept. This means meal two for today will include cheese omelet! I warned her feeding Reese does not like COLD eggs. Who does??? Surprisingly her first few bites (very small) went well for the most part.... The temperature did not affect her like it has in the past when I fed her. She seems to be doing well for the most part. Not her favorite foods at this point! The applesauce doesn't seem that bad to Reese right now.... It is funny to see her facial expressions from the other side. I know that feeling won't last once I am face to face and she pulls out every trick in her book!


Today was also OT with Christie in the POOL! Reese didn't want to separate from me at first but once I disappeared behind the wall she forgot about me and enjoyed her session. Three therapists worked with Reese in the pool with balancing on a platform with waves for core strengthening and swimming motions using her arms. They also worked on some other stuff! Reese did really enjoy the pool......and the shower afterwards!

Day # 5 Starting 2nd Week of Clinic

First week complete and ready for number two week! Today is Tuesday April 21st. Still on yogurt, pudding and applesauce. Sessions have been increased from 10 bites per session to 15 bites. Reese is continuing to accept all bites and doing better at self feeding. She needs help with the spoon to her mouth but is handling a larger volume on the spoon. She has made progress with each day and continues to enjoy the sessions at this point.....Let's hope it continues!!!

Day #4 Out Sick Today

Today was Monday April 20th. Not at the feeding clinic today, home sick with mom. Here is a picture of me and my two Big brothers Nicholas & Mason on Easter........

Day #3 Introduced Applesauce To Conclude Week #!!

Today was Friday April, 17th, Reese's third day at the clinic. Today her feedings included applesauce as well as yogurt & pudding. Applesauce would be offered slowly into the sessions. The volume would be very small since this is a new food. Reese accepts all bites with some gagging from time to time. This is usually what occurs with any new food.... As Reese continues to eat and accepts each bite a new food will be introduced. This program is about acceptance and not volume of food. Reese will not get to large volume but hopefully reach a goal of variety vs volume. Anything is possible with practice and consistency......

Today, we played ball outside and watched a movie on the computer to pass the time by.........
Sorry for the delay with Reese's progress!

Day #2 10 Bites of Yougart & Pudding

Today started out the same way it ended. Reese didn't want to go out the door this morning(picture to prove it) and didn't want to leave Chop. Not sure what she wanted, but turned out to be an OK day. She had her usual 10 bites at each meal of yogurt and lunch time she was given vanilla pudding. Again, something Reese already eats at home...... She handles things just fine for now. This week I expect to go just fine.....

We spend allot of time bonding. Reese went for a ride in the fire truck and wagon around the hospital a thousand times! We also ventured out to Penn's campus to the duck pond. That is about all there is to do there. It was nice to get outside the hospital and get some fresh air. We met another mom and her daughter Maggie (also 2yrs old) we became instant friends.... Reese enjoys playing with her! That is about it for today..........
I love you! mommy xo,xo

First Day of Feeding With Love(Feeder)

Today, Wednesday April 15th was day #1. We arrived at Chop @ 8:30am for Reese's first meal scheduled for 9:15am. Each day I go to the Seashore House 3west to the Day Hospital(this is what the room is called) leave Reese with one of the nurses and the feeder will come and get her. I am to go down to the observation room and wait for them to bring her down to eat. In the room where I sit is a recorder to record each feeding. Something new that I really like! Something for Reese to keep and remind herself how far she has come.........I hope these words will come true after this process is over! If there is anything to be learned from this whole experience it is never take anything for granted.......Who ever knew this world existed where children couldn't eat. I can honestly say I didn't....This journey might be easier in some ways and much harder in other. We get to go home everyday to our family, but anyone who has ever been to CHOP for their child or someone else knows it is a sad place. I thank god for Reese every time I leave the hospital because we do get to go home(unlike many children who live there) With that being said it makes for a LONG and exhausting day. Reese was asleep before we left the parking garage!!!! I need the patience and she needs the strength. We'll get there together! That doesn't mean we don't need you daddy!

Addmission Day....Meet and Greet The Team

On Tuesday April 15th we met with the team of doctors and specialist who will be following Reese over the next few weeks. This was very mentally exhausting and not to mention everything I already heard or knew from past experience. They we surprised at how much I already knew about the program and how few questions I had for them.....I did a feeding with Reese while they observed behind the glass and it went as expected. Started off good(with yogurt) and turned bad quickly(with applesauce) a typical day at the Domico house. Reese likes to eat what she likes and nothing more......Once the feeding was finished, the team talked with me and advised Reese would be given 10 bites of yogurt for each meal the first week. This was upsetting to hear because she eats more then that at home. We left for the day and went home........

Gearing Up (with Dora) For Another Feeding Clinic.........

To all of our friends and family..........
We wanted to let everyone know that Reese will be starting a new feeding clinic tomorrow April 14th @ CHOP. This is an intensive four week feeding program that will hopefully be successful the second time around! Here is Reese on the night before her big day...... Dora lunch tote in hand and ready to give it a second try! It has been almost 17 months since we left St Josephs feeding clinic and though Reese has made some progress, it has been slow...... She can eat pudding and yogurt now but depends on her tube feeding for her main nutrition. We have been working with Reese to learn how to eat, but it has been a struggle at home. We want her to know that we are all routing for her and wishing her much success! We all love and adore you little one! Your big brothers(Your BIGGEST fans) are praying for you and wish you Good luck! We know you'll do it this time!

Love, Daddy, Mommy, Nicholas & Mason
xo, xo