Day #35....Home At Last!

At Last! We are home together as one family....We arrived back home today late this afternoon. Skipping out on the last feeding and saying goodbye to our friends at the clinic. Although it was sad to say goodbye to the many people who have cared for Reese over the past seven weeks. Home is where we need to be for now. You could feel the energy between Reese and I leaving the clinic today. Although we left today, we will probably be back someday for round two(mashed foods). Maybe even round three(soft chewables). Below is a link to the New Jersey News where the feeding clinic was interviewed. Check out Reese and her friends at the St Josephs Feeding and Swallowing clinic.

http://njn.net/newspublicaffairs/healthreports/

Here are some pictures of Reese's last day of Day Treatment. We will miss you Adam! Stay strong and continue to have faith Joanna! Your little man will eat someday soon!!!

Reese wishes everyone a safe and Happy Turkey Day!

P.S. Please continue to follow Reese's progress as she learns how to eat at home!

Day #34....Remembering Our Family & Friends Who Came To Visit

Today went as usual as it has for the past seven weeks. Reese is not meeting her goals for feeding, but she has shined in other areas. When you get a chance to see our daughter you will see how much she has grown. Though we did not meet our feeding goal, other issues have been addressed such as her reflux. Knock wood, she rarely vomits these days. Let's hope it continues...This plays a big part in motor development. We are waiting out the days until Reese crawls. She is so close! She has figured it out that it requires hard work in order to crawl. At the moment she would rather smile at you and hope you'll bring the toy to her! We will get there in time! A friend at the clinic told me our babies take inch stones instead of milestones. I will have the patience for whatever and however long it takes to reach the next step! Keep working hard little angel. We will always be there to hug and kiss you when you make it to the next inch stone!
Over the past seven weeks there were many nights we spent alone. There also were some nights we didn't have to spend alone. Reese and I would like to especially thank Aunt Moe, Girlfriend Gerry, Girlfriend Colleen and Girlfriends Lori & Renee for making the trip to N. Jersey. We understand life must go on at home and sometimes family, work, time, children and many other obligations did not allow many of our family and friends to come see us. There were so many people who helped our family in so many other ways....The continued support such as getting our boys from school, helping them with homework/studying, making sure their uniforms got back to our house and feeding them snacks/dinner.....the books, chocolates, stuffed animals, cards and gift baskets/tins Reese and I received at the hotel....the birthday gifts sent up by family and friends to help celebrate our daughter's first birthday....home cooked meals as well as Wegmans soups, bagels & cream cheese(you know how much I love all of them!) so we didn't have to eat out everyday for seven weeks....the one thing that my daughter has to look back on is the blog. the comments from everyone were so beautiful!!!I will always tell her about this experience and how much people did to help all of us through this difficult time. We know all of you who have followed her progress love her deeply. We appreciate everything everyone has done for our family. I only hope I can give back to another person/family what you haven given to me and my family. We love all of you!

Day #33....Preparing to Go Home!

This morning we were late getting started and arrived at the clinic at 9:30am. Slow moving these last few days waiting for this week to be over. It has been a long and tiresome road to get to this point...Reese is feeling it the most. I think she is so tired and ready for this part to be over. When she is placed in the high chair, her cry even seems effortless. She opens her mouth every time but swallows only sometimes. I think Reese has reached her level of accomplishment in the feeding dept for now.

I spoke with Pam, the family counselor today and made Reese's follow-up appointments. We will be coming for out patient every two weeks. Reese will also have OT during each visit. We also will be a test family for E Feed. This is something the clinic is working with families that live a distance away. We will feed our daughter from home and the clinic will watch us live. This will happen in Dec.
As we prepare to go home in two days and bring this program with us. We have allot of work to still do in order to help our daughter to eat. This experience has helped us in so many ways. It has helped us to know we do not stand alone when it comes to having a child with feeding issues. We were fortunate to have met some really great people through this program. We will be leaving soon but will always remember our friends at St Josephs!

Day #32....Out Sick Today

Reese is back at the hotel resting today. Hopefully, we'll be back at the clinic tomorrow.

Day #31....Saying Daddy (Dad-dy)

Driving back to the clinic didn't seem as difficult today. Mondays are much more emotional then most other days. Reese has moved back to working with a dry spoon and water. I have finally accepted that we probably will not hit our goal for feeding for a while. We will continue to work at it each day until she learns it! Keeping her opening and closing without being fearful or crying is more important then trying to rush something that cannot be rushed. We'll get there someday! I pray often to give us strength and patience with our daughter. We are a good team and will do this together!
Today started the count down until we move back home on Friday. Although feeding still has not happened for Reese, we are happy with her progress in other areas such as her physical mobility. Reese has low tone and it is hard for her to do things such as rolling, sitting, crawling & walking. She can roll, sit, start to move into a crawling position and stand for a few minutes. These are BIG steps for Reese. Our little girl makes us proud everyday. I have been working with her for a short while teaching her to say daddy. She now says it! To hear her say it over and over is too cute. She likes to hear herself say it:)I wonder who she will sound like Nicholas or Mason??? If you have heard our boys talk, they sound nothing alike!

Day #30....Saying Good Bye To A Good Friend

Friday was no different with feeding. I felt by this point food needed to be incorporated back into Reese's feeding sessions. Although I did get what I wanted with the food. Reese continued to refuse the food by not closing her mouth. She did not close her mouth at all, not even one bite! I felt desperate at this point and thought how could it hurt. Well, the truth was how good would it be if my daughter cried at every meal. This is basically what had happened.
Before Reese's day ended, we had to say good bye to a good friend we met over the course of the last 4 weeks at the clinic. Reese and I were fortunate to have met Melissa and daughter Rachel. We had spent allot of time together over the past few weeks. It is a small world when you leave home to go to a feeding clinic(which most people never have to do in their life) and meet a person who has a mutual friend/cousin that you know. We will surely miss both of you! We wish you much success in feeding and keep believing in yourself! You can do it Rachel!!!!
We left the clinic and headed home for the weekend. It was a long car ride home (3 hours) but I have to say Reese handled it well. She is a really good passenger!!

Here is Reese with her friend Rachel.....

Day #29....Missing That Place Called Home!

Everyday Reese and I get up and go to a place where there are caring, loving and helpful people. This place is St Josephs Children's Hospital. My daughter has spent the last 6 weeks here getting the help she needs. I have watched her every step of the way. She has grown so much over these past 6 weeks. I cannot believe how much more active she is now. She truly is a different child from the first day we arrived at the clinic. Feeding has been a struggle from the start and continues to a struggle today. We had hopes for our daughter to be eating by now. We know this is not going to happen over night or over the next few weeks. Who knows it could take months. Only God knows. I do know one thing and that is we miss that place called home! We will be coming home soon. They have suggested we stay another week. We will continue the day treatment program throughout next week. Maybe one more week will get us closer to figuring out what works for Reese.

I talked with the school counselor today and she let me know that Nicholas and Mason are doing well. They have expressed to her times they feel sad about their mom and sister being away. I think of how much they have matured over the past year. How lucky Reese is to have such great big brothers!

We will be driving home for the weekend after the clinic tomorrow!

Day #28....Learning The Word Close

Today, Reese was going to learn the definition of the word CLOSE. Annette the feeder would be working with her on saying the word close and then closing her lips for the beginning of the session. Then a dry spoon would be presented and when the spoon was placed in Reese's mouth, Annette would close Reese's mouth on the spoon. The final part of the session would be water on the spoon and letting Reese close herself. If after a few seconds Reese did not close, Annette would help with closing her lips. This should prompt Reese to swallow after each spoon. Reese did OK during these sessions. Your probably thinking by now all this to get a child to eat. I never imagined anything like this in my entire life. These children deserve Disney World after achieving to goal of learning how to eat. If you ever thought about how much the tongue moves while eating to get the food back to the throat and down to the stomach. It will amaze you! I can probably say this if a thought of mine every day lately. It is something we never had to think about and something again that comes so naturally to most of us.

WE ALL LOVE AND BELIEVE IN YOU!!!

Day #27....Look At Me Stand!

This morning during her first feeding session Reese continued to fight with every attempt to put food in her mouth. As I stood there and watched I couldn't believe all these weeks have passed and we were no further along with feeding. I almost didn't want to believe this to be true. Maybe I was numb to it all by now. Reese finished her first session and went back to the playroom where she would get her tube feeding. I wat
ched her through the window. What a different child she was,playing and moving around. Interacting with the other children...I went to the waiting room and sat with the other mom's for a while. Dianna came to take Reese for therapy around 10:45am. I went into another room and watched her therapy session. This was no better then her feeding session. In fact Dianna had mentioned to me that this was probably the worst therapy session for Reese yet. At 11:30 it was time for another feeding session. This was so bad that Reese got herself so mad and upset she had fallen asleep during the session. I left the clinic and returned for her final session of the day. While I was gone the doctors discussed to makes changes and have Reese go back to a dry spoon and water. The food was taken away again. During this session the feeder would work on saying the word CLOSE and practice closing her lips. Reese would move her mouth and close her lips on her own. The next step was a dry spoon with the words OPEN and present the dry spoon and CLOSE practice closing her lips. This seemed to be working with the movement of her mouth. Reese was doing exacting what they had hoped for. Then the spoon with water. At first, Reese showed resistance. After a few bites she accepted the spoon. It was as if she thought there was going to be food and then when it was only water. She gained Annette's trust back and was fine. Why not the food???? Reese knows how to swallow and has done it already. There was a change in Reese's medication on Monday and the doctors are wondering if this has anything to do with how today went. We will decrease her medication and see what happens.

After a long day at the clinic. I came back to the hotel and bathed Reese. We had dinner with friends in the room. Shortly after our friends left and I played with Reese on the floor. I was working with her and helping her to stand. She did so well, I had a chance to take some pictures! I read a book to Reese and off to sleep she went. What an exhausting day for my little angle! May God Bless you and give you a better day tomorrow!
Sweet Dreams little one!

Day #26....Stuggles and Strides

This journey continues to be a long and challenging road each day. Today started a new week and some things still remain the same after five weeks. The most upsetting thing to have to deal with is that our daughter still struggles to eat anything. After trying different foods, textures of food, changing the rules, adjusting medications, one would have given up by now. We are committed to helping our daughter and will do whatever it takes. We are nearing the end of stage one of this journey and realize our family needs to get back together soon.....We will bring this program home and continue to work with Reese everyday!
Although Reese is not meeting her goals (eating 1 ounce of food each meal) with feeding, she continues to grow and get stronger everyday. She weighed 20lbs 13oz as of today. She fluctuates a few ounces up and down and has only lost a total of 3 ounces over the past five weeks. Reese had a terrific therapy session today and stood holding onto a table for 2.5 minutes. This is more then we ever expected and enjoy watching our daughter get stronger everyday!

Keep up the great work! We love you!

Day #25....Wrapping Up Week #5

Friday was day number two with daddy. This day Reese's rules were Non Contingent Reinforcement + Non-removal of the Spoon. This means Reese would get to play and or watch a movie the entire time during the feeding session. The spoon would not move from her lips until she opened. Reese had her moments throughout the day. Sometimes she did well and other times she did not so well. We'll take the good with the bad for now. Even though Reese has struggled with feeding, she has showed tremendous improvement with her physical therapy. Reese has learned to do So Big, transition from laying to sitting on her own, moves in a complete circle while sitting on the floor,getting stronger with her legs and has begun to babble allot! These mile stones have all happened in the past two weeks. It is so good to here her voice and the sounds she makes are much more clear and long lasting. She has found a language all her own. She has each one of us so amazed with her accomplishments. We cannot pull ourselves away from her. Reese is the glue to our family! This little girl continues to make us proud!




Keep up the good work! You make us proud everyday!!!

Going back to N. Jersey on Monday morning to begin week #6.

Day #24....Daddy Feeding Reese

Reporting for daddy on the blog to all of our friends and family......Reese had a good first feeding on Thursday morning. John was extremely excited to share this positive news. He stayed at the clinic and talked to many of the staff regarding Reese's progress. Reese cries allot during her feeding sessions which sometimes ends in vomiting. We are working through dealing with Reese being very upset during these sessions. This is very discouring to us while we know this may prevent her from progressing to the next step at this point. Going into this process we often thought to ourselves, Reese is young and we may have an advantage. We are seeing now that age has it's disadvatages with feeding issues. We keep telling ourselves that someday our daughter will eat. The not knowing when that day will come is the most upsetting part. We will together do everything our daughter needs to get her to feed orally. We are determined and will never give up!

We will work through this difficult time......

Day #23....Happy Halloween

Today was Halloween and there was going to be costumes, parades and trick or treating for all of the children at the clinic. Feeding comes first for all of these children. Reese continues down the same path she has been for the past few days. The first feeding session seemed to go OK. The second feeding session a little more crying, by the third and fourth she was upset more times then not. I had the opportunity to do all four sessions with her today. This usually does not happen on Wednesdays. This day was different because I will be going home for a few days and daddy will take over. A change our entire family needed....

Aside from feeding the staff at St Josephs did a terrific job making our stay at the clinic during Halloween a memorable one. They dressed all the children and paraded them throughout the clinic. Trick or Treat bags and pumpkins were made for each child. The little things mean so much!

After a full day at the clinic Reese(Lil'Lamb) and mommy headed for home to trick or treat with big brothers Nicholas & Mason. It was great to be home!

Happy Halloween to all of our family and friends!!!!

Day #21....Sick Day....Day #22....Still Under The Weather

Starting our fifth week at the clinic, Reese and I drove back to the hotel on Monday night. Tuesday morning we headed back to the clinic to start a new week. The morning was rough getting started. Reese still suffers from reflux every morning and the car ride to the clinic is not pleasant for her. Reese was weighed today and is 20lbs 8oz. She continues to move a few ounces up and down on the scale. Doctors are not worried about weigh gain at this point. They are more concerned about getting her comfortable enough to handle her tube feedings w/0 vomiting. Doctors are changing things such as adjusting medications to get Reese's reflux under control.

The first feeding went rather surprisingly. I gave Reese her first feeding session. One dry, one thickened juice and last ten bites with the back of the spoon dipped in bananas. Reese fought a little in the beginning of the session, she calmed down half way through and finished good. I did not expect her to do so well after coming off a weekend from being so ill. This surprise was short lived. The day went on and Reese experienced some tummy discomfort which lead to vomiting several times throughout the day. Maybe she wasn't quite ready ready to go back to camp.

Stay tuned for little miss Reese and her Halloween costume.......

Day #20.... So Close, But Yet So Far Away

Friday completed the fourth week for Reese's feeding camp and this day was suppose to be the end. Though Reese has made progress,we cannot help but to feel this journey has just begun. The initial start was great, we saw much improvement in just a short time. As the weeks went on we had our share of HIGHS and lows. Reese struggles with feeding and will need additional weeks at the clinic. How long is still undetermined at this point.

We headed home on Friday night for what we thought was going to be a fun family weekend. Unfortunately Reese starting feeling ill Friday night (during the night) and did not feel better until Sunday afternoon. She couldn't keep her tube feedings down and feeding from a spoon was out of the question. We did not make it back to the clinic on Monday. Reese is feeling much better and will be back to work first thing Tuesday morning.

I wanted to share some photos of our little girl from late Sunday afternoon...We have been working with Reese on SO BIG! and she finally did it on her own! This is a big step for her and not to mention how proud we are of her once again. This mile stone came so naturally to our boys and I have to admit. I cannot even remember at what age Nicholas and Mason did So BIG. Having our daughter has taught us to cherish every moment of the baby stages. We all as a family enjoy this precious gift of ours....our daughter...our sister. John and I as well as Nicholas and Mason were so proud of Reese when she held her arms high in the air and did SO BIG! Here she is.....

Day #19....Holding Out

On the way to the clinic Reese struggled with her reflux. The movement in the car seems to bother her often. Once we were at the clinic, she opened her eyes wide. This was the first day we walked into the clinic with Reese's eyes open. As many of you know, is super sensitive to brightness and natural sunlight. Not to mention she is not a morning person. Reese would like her day to begin after 10:00 am everyday!
I watched her first feeding session, she cried, fought and even held the juice in her mouth with some bites. The non removal approach is still in place with extra chin support. This will help with the tongue sweeping the food to the back of the throat. The harder you push on Reese's mouth the harder she works at keeping her mouth open. I was able to feed her the third and fourth feedings of the day and these were no different. She is not using her tongue the way she needs to but continues to open her mouth with most bites.
The fight and stubbornness in my daughter tells me she will figure it all out someday. Reese still shows signs of discomfort and doctors are figuring out how to help her feel comfortable by adjusting medications.

Tomorrow we will go home for the weekend. Can't wait!

Miss Mimi did Reese's hair today!

Day #18....Staying Strong & Keep Fighting

Getting off to a rough start this week was very hard for both Reese and I. Not letting this temporary set back stand in our way. We must go on... Today I wanted to keep going on, no matter how hard things got. I knew this journey was not going to be easy. Nor did I imagine how truely hard it was going to be phsyically and emotionally either. I do believe in my heart of hearts that my daughter will shine! She has always been a fighter from the moment she arrived. This difficult time in our lives will some day be a distant memory. Today, my friend Colleen came up to visit Reese and I. She was able to see what a day is like at the St Josephs feeding camp. We both stood and watched as Reese had her first feeding session. My friend turned to me and said I don't know if I could stand outside a window and watch my baby cry. These were my exact thoughts early on this journey. I am much stronger now. I hope my daughter can take my strength and never give up! We all together will help her fight her way through!

Reese,
You may not always see me with your eyes. It is sometimes just a window between us.....I'm hear with you always...Stay strong little one!! You have so many people who love and care for you!
much love and kisses from your mommy, daddy, Nicholas & Mason

Day # 17....The Refusal Approach

Today was a new day and I wanted so desperately to forget about yesterday. We went into the clinic and started our day. I stood there and watched what was yet another bad feeding session. I could almost sense that this was going to happen, so I left the clinic and drove back to the hotel. Thinking of going for a run, but instead took a long shower. Saying to myself, stay strong for this little girl. No matter what today brings there will always be tomorrow.:)

There was a parents meeting today and it was obvious that Pam (family councilor) wanted to know how I was doing and what was I doing to help myself feel better. My respond was...when my daughter feels better, it will make me feel better. I could only think of Reese. Talking about my fears amongst other people who share these same feelings helped me today. After the meeting we headed back to the clinic, where Reese was getting ready for final feeding session. This time the non-refusal approach was incorporated into this session. Reese would be given one dipped(thickened juice) and one dry spoon. Only this time Reese had to accept the bite because the spoon would not be removed from her lips until she did. Although she did have some refusals and after a few seconds she did open, she did open for some bites immediately as well. I thought it may take some time to rebuild her back up. Maybe time is all she needs and this is her way of telling us.....
Thank god for this day to be over and tomorrow starts a new day. Let's hope tomorrow she makes her mommy proud:)

Day #16....Sadness In My Heart

Mondays seem to be the hardest days to get through. Today, I felt sadness all day long. Trying to hold onto the the wonderful weekend and great times we shared together often would help me start a new week. Today was different, my heart felt sad from the moment I stepped out of bed. Maybe it was just facing another week alone. I thought to myself...It will get easier, this is what they tell me. Well, today got harder as the day went on. Reese's first feeding went just OK. Her second feeding slowly showed signs of refusal. By the third and fourth feeding my daughter refused all bites. My heart broke and I thought to myself this is not happening. How could she do so well with accepting and suddenly refuse an entire feeding session. She did not accept one bite out of sixty bites. I wish I knew all the answers and this day I prayed please help me! I feel like I'm loosing this battle!

Reese's 1st Birthday....

This day was special for our little girl who was turning ONE! We decorated the hotel room to celebrate Reese's big day. The boys helped Reese open presents sent up by our family and friends.The weather was so beautiful outside, we decided to take the kids to Central Park in NYC. The boys loved climbing the rocks and Reese just loved being outside watching them run. It was so nice to see them smile and forget about life for a short while. Later that day we returned to the hotel to sing to the birthday girl! This day was so perfect and a day I did not want to go away!

Happy 1st Birthday to our precious little girl!
We love you!
xo xo xo
Mommy, Daddy, Nicholas & Mason