Brennen had an amazing first day of therapy! We began our day at 7:45 a.m. with filling out paperwork and then Brennen had his first meal at 8:15 a.m. They started today with foods that Brennen is tolerant of and comfortable with. His breakfast was rice cereal and 2 oz of pureed peaches. During the remaining 5 scheduled feedings of the day he had 3 oz of pureed peaches and 2 oz of pureed sweet potatoes. At the end of each feeding he drank 4 oz of whole milk.
Brennen ate the majority of his meals very calmly with little to no anxiousness with the exception of the 4:30 feeding; which was the last feeding of the day. By this time, he was getting tired of it and had enough. I can't say that I blamed him because by this time I was exhausted too. What a little trooper!
In-between the feedings, which are scheduled approximately 2 hours apart due to the low volume of food consumed, Brennen played with toys and rested. Tomorrow he will be able to see the Early Childhood Education Specialist and begin some "preschool" classes. I know he will enjoy this break. He really is doing amazing and I am so proud of him. He will also begin seeing an Occupational Therapist who will work on coping with some of the sensory sensitivities Brennen is experiencing. They also explained that Brennen will have some Recreational Therapy which allows him to have some large gross motor play. I know he will LOVE that part of the day!
The feeding team explained that they are going to give Brennen the rest of this week to settle into this new change of routine by keeping foods we know he likes and is comfortable with. Next week we will begin some of the more challenging tastes and textures, like chicken. Please be in prayer for Brennen that he will be accepting of these new textures/tastes as we begin working through some of these sensory issues.
Being here at the Ronald Mcdonald House. you see very quickly that although these feeding issues can be frustrating to us, we are definitely blessed and humbled by the fact that we are one of the more milder cases here. I said a prayer as I was eating in the kitchen area and looked around at the families at the surrounding tables. I thanked God for my beautiful boy and girl who have little to no serious health issues. It would literally break your heart to see what some of these families are dealing with on a daily basis. I am not saying that I was naive enough to think that Brennen's issues were going to be the most severe, but it definitely puts everything into perspective.
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Tuesday,September 29, 2009
Whew! I will keep this post short because I am exhausted. Brennen and I are at the Ronald Mcdonald House tonight. They called and said we had a room available so after the funeral we went home and packed and got here about 6:45 p.m.
After we got unpacked, Brennen and I went to the kitchen area of the house and I gave him his rice cereal and strawberries and I ate left-overs from the funeral dinner. We went back up to our room and I gave Brennen a bath and got his pajamas on. We said prayers and now he is laying in his bed trying to go to sleep.
I will try to do the same for myself.
I will post more tomorrow on how our first day of in-patient therapy has gone.
p.s. no kitchenette but room is very nice!
After we got unpacked, Brennen and I went to the kitchen area of the house and I gave him his rice cereal and strawberries and I ate left-overs from the funeral dinner. We went back up to our room and I gave Brennen a bath and got his pajamas on. We said prayers and now he is laying in his bed trying to go to sleep.
I will try to do the same for myself.
I will post more tomorrow on how our first day of in-patient therapy has gone.
p.s. no kitchenette but room is very nice!
Monday, September 28, 2009
Monday, Sept. 28, 2009
Some Good News!...We got a call today from the Cleveland Clinic stating that it would be okay for Brennen to start on Wednesday instead of tomorrow! So, basically that means that Tim and I can attend my grandfather's funeral together and I won't have to rush up to Cleveland afterwards.
We start at 8:00 a.m. on Wednesday morning. Now, if only I could get a room at the Ronald Mcdonald House with a kitchenette...
We start at 8:00 a.m. on Wednesday morning. Now, if only I could get a room at the Ronald Mcdonald House with a kitchenette...
Sunday, September 27, 2009
Sunday, Sept. 27, 2009
Today we went to visit Ronald Mcdonald House. I can honestly say that I feel much better about going now that I have visited the house. There are common areas of the house and then Brennen and I will have our own private bedroom and bathroom. The bedroom resembles a hotel room. The '"feel" of the house is very casual, very familiar. All of the families staying in the house are there for one purpose: their child(ren) who is receiving some sort of therapy or treatment at the Cleveland Clinic or University Hospital. I get the feeling that by the end of our stay the volunteers, and the other families that stay there become like extended family members.
I find out tomorrow if we have a room available on Tuesday. If one is not available, Tim will drive Brennen to therapy and then drive Brennen back home after therapy. If a room is available, Sophia and I will make the trek after the funeral on Tuesday.
Kind of a crazy start, but I was thinking today as Tim was feeding Brennen how this is a start to a new beginning for him. We may be able to actually go to a sit-down restaurant for the first time and have Brennen eat with us. The thought almost brings tears to my eyes.
Brennen gagged on some sweet potatoes as he was eating today. I look forward to the day that all of the stress with eating is but a memory.
I find out tomorrow if we have a room available on Tuesday. If one is not available, Tim will drive Brennen to therapy and then drive Brennen back home after therapy. If a room is available, Sophia and I will make the trek after the funeral on Tuesday.
Kind of a crazy start, but I was thinking today as Tim was feeding Brennen how this is a start to a new beginning for him. We may be able to actually go to a sit-down restaurant for the first time and have Brennen eat with us. The thought almost brings tears to my eyes.
Brennen gagged on some sweet potatoes as he was eating today. I look forward to the day that all of the stress with eating is but a memory.
Friday, September 25, 2009
Ready..Get Set...Go!
We are set to begin Brennen's therapy on Tuesday, September 29th.
Tim will be going with Brennen on his first day. My grandfather passed away on Thursday and his funeral services are scheduled for Tuesday. Sophia and I will be going up to Cleveland following the services. We tried to move the start day to Wednesday, however they only begin new patients on Tuesday so we would have to delay a whole week before starting. My grandpa was glad for Brennen to be getting the help he needed so I know he would not want us to delay this any longer. Tim feels bad he will miss the services, but our family is behind us with proceeding with our designated start date.
We will post Brennen's progress and how the day went in general for that first day. I am predicting some craziness!
I am nervous for Brennen and how he will respond. It will be a day of mixed emotions and a feeling of being torn with my thoughts in two separate places. I will be thinking about Brennen as he and Tim are there while at the same time be grieving the loss of my grandfather.
Through it all, I know the Lord has a purpose and a plan for everything. Sometimes it's hard to see through the stormy clouds...
Tim will be going with Brennen on his first day. My grandfather passed away on Thursday and his funeral services are scheduled for Tuesday. Sophia and I will be going up to Cleveland following the services. We tried to move the start day to Wednesday, however they only begin new patients on Tuesday so we would have to delay a whole week before starting. My grandpa was glad for Brennen to be getting the help he needed so I know he would not want us to delay this any longer. Tim feels bad he will miss the services, but our family is behind us with proceeding with our designated start date.
We will post Brennen's progress and how the day went in general for that first day. I am predicting some craziness!
I am nervous for Brennen and how he will respond. It will be a day of mixed emotions and a feeling of being torn with my thoughts in two separate places. I will be thinking about Brennen as he and Tim are there while at the same time be grieving the loss of my grandfather.
Through it all, I know the Lord has a purpose and a plan for everything. Sometimes it's hard to see through the stormy clouds...
Wow! We are blessed...
Today I brought home a tote filled with presents that would rival anything off of Santa's sleigh...
My amazing co-workers filled a plastic tote to overflowing of items that Brennen and I could use to help make our stay in Cleveland more comfortable and enjoyable. Brennen kept asking me, "Mommy, is it my birthday?!".
THANK YOU from the bottom of our hearts...Your support, prayers, kind words and hugs mean so much. We truly feel as though Brennen has been lifted up in prayer and that this rehabilitation program will be successful for him.
God Bless you my friends! :)
My amazing co-workers filled a plastic tote to overflowing of items that Brennen and I could use to help make our stay in Cleveland more comfortable and enjoyable. Brennen kept asking me, "Mommy, is it my birthday?!".
THANK YOU from the bottom of our hearts...Your support, prayers, kind words and hugs mean so much. We truly feel as though Brennen has been lifted up in prayer and that this rehabilitation program will be successful for him.
God Bless you my friends! :)
Monday, September 14, 2009
Brennen's Diet
We are 2 weeks away from beginning Brennen's therapy and I wanted to document what Brennen is eating at this time and then compare it to what he is eating at the end of our ten week day treatment program.
*yogurt *applesauce
*baby rice cereal *Rice/Corn Chex Cereal
*pureed peaches *Gluten-free Pretzels
*pureed sweet potatoes *Potato Chips
*grated cheese *grapes *strawberries
Notice the smooth and crunchy textures.
*yogurt *applesauce
*baby rice cereal *Rice/Corn Chex Cereal
*pureed peaches *Gluten-free Pretzels
*pureed sweet potatoes *Potato Chips
*grated cheese *grapes *strawberries
Notice the smooth and crunchy textures.
Wednesday, September 9, 2009
Gluten-Free News and Links
Here is some information on Gluten-Free foods, news, etc. I will update periodically as I find helpful information pertaining to Celiac Disease.
1. Gluten-Free foods available at MLB ballparks!
It is awesome to see how Gluten-Free foods are becoming more mainstream. Who doesn't love eating a hot dog or pretzel at the game? Part of the reason I love going to the games is to eat the food! For people with Celiac Disease their dietary options are limited in an everyday setting; but in a ballpark, their choices are practically extinct! Imagine not being able to eat pizza, hamburger, hot dog, pretzel, beer, soda (carmel coloring in soda pop has gluten in it). Kinda takes the fun out of going, doesn't it?!
I think maybe I will email the Cleveland Indians...maybe they will offer a dedicated concession stand to gluten-free foods. Worth a try! After all, people who are eating gluten-free foods would like more than a "can-of-corn!" (bad attempt at baseball humor)
1. Gluten-Free foods available at MLB ballparks!
It is awesome to see how Gluten-Free foods are becoming more mainstream. Who doesn't love eating a hot dog or pretzel at the game? Part of the reason I love going to the games is to eat the food! For people with Celiac Disease their dietary options are limited in an everyday setting; but in a ballpark, their choices are practically extinct! Imagine not being able to eat pizza, hamburger, hot dog, pretzel, beer, soda (carmel coloring in soda pop has gluten in it). Kinda takes the fun out of going, doesn't it?!
I think maybe I will email the Cleveland Indians...maybe they will offer a dedicated concession stand to gluten-free foods. Worth a try! After all, people who are eating gluten-free foods would like more than a "can-of-corn!" (bad attempt at baseball humor)
Monday, September 7, 2009
How Did We Get Here?!
Brennen was born on January 25, 2006. He was (and is..) a beautiful, typical baby boy. Brennen had no difficulty taking a bottle and was a good little drinker! When he was about 6 months old, I began transitioning to baby pureed foods and some table foods. Brennen had little to no diffiulty with eating the smooth pureed baby foods.Since he wasn't having any difficulty with the baby foods, I decided to go ahead and try some table foods. I remember one of the first table foods I tried with Brennen was mashed potatoes. I placed a small amount of the potatoes on the spoon and fed them to him. He immediately gagged. I thought to myself, well he just must not be ready to handle table foods at this time....That was 3 years ago and I can tell you with sincere frustration we are still eating the same pureed foods that he was eating when he was a baby.
I take Brennen to a wonderful Pediatrician, but I don't think he took me very seriously at the beginning of all of this when I would try to explain to him that Brennen was not eating. I think he thought that I was just another overly concerned first-time mom who had a picky eater on her hands. Some of the frustrating advice I would receive sounded something like: "He'll eat when he's hungry!" or "Just put whatever you are having for supper in front of him and if he eats it fine, if not, he gets nothing until the next meal time." For your typical picky eater who just won't eat his/her vegetables for that day, I could see using those strategies. But Brennen was different. He wouldn't even eat a cookie if I put it in front of him, let alone broccoli!
The only solid foods I could get into Brennen was peanut butter and jelly sandwiches or toasted cheese. I would make both sandwiches on whole wheat bread and try to sneak some vegetables or protein in the toasted cheese. He would usually detect them and then not eat the rest of that meal. The thought that might be going through your mind is, maybe he's not eating due to a defiant behavior. Let me assure you, that I am a pretty structured person. I run my special education classroom that way and my home too. After being in the teaching profession for 10 years now, I have seen just about every type of behavior there is...I 'm not easily bamboozled!
My special ed background began to prove itself worthy, now for personal reasons. Brennen definitely has some hypersensitivity issues. I began thinking back to when Brennen was a baby and how he never put any toys or things in his mouth. (Baby proofing our house was pretty easy with him!) Brennen hates...and I mean hates...having his toenails trimmed. He isn't a fan of walking around barefoot (inside or outside). He is definitely a sock boy! Brennen is also not a fan of flying bugs, but is the first to pull an earth worm out of the ground! I think it is the sensation of the bugs flying around his ears (the sound the wings make), which I can't say I blame him...who likes that sound?!
But I digress...back to the sandwiches... As I was saying, he would eat sandwiches. We noticed that Brennen would never tell us he was hungry. He would seem as if his stomach was bothering him. This was difficult because with Brennen being so young, he was unable to tell us what he was feeling. Brennen also suffered from chronic constipation which didn't help his appetite either. Our Pediatrician referred us to a Pediatric Gastro-Enterologist at the Cleveland Clinic. She ran some bloodwork tests and from the tests we discovered that Brennen had Celiac Disease.
People with Celiac Disease are unable to digest the proteins found in wheat or gluten. Their bodies have an intolerance to these proteins. Brennen's diet can not contain anything with wheat, barley or rye (these are the main ingredients in products that would contain gluten).
The pieces of our little Brennen puzzle were finally being put together. No wonder he acted as though he wasn't hungry! His poor little stomach was irritated from all of the gluten that was in his diet. We began seeing a Pediatric Nutritionist who then referred us to a Feeding Therapy Program through the Cleveland Clinic. We have been receiving outpatient therapy but are discovering that because of Brennen's background with his hypersensitivities and his anxiety about eating food due in part to how food has made him feel for the past 3 years, he would best be treated in an 8-10 week day feeding program. Brennen and I will stay in Cleveland Monday-Friday and he will receive intense feeding therapy to overcome his sensitivities and anxieties over food. We will be able to return home on the weekends.
This will not be easy for Brennen (or the rest of our family) but we truly feel as though this therapy is an answer to so many prayers. Thank you for reading my post and following along with our journey.
I will be posting updates to my blog on Brennen's progress, his setbacks, the good, the bad and the ugly..it will all be here. I hope you will follow our journey and share it with someone who maybe going through the same things we are. Or maybe you are someone who has gone through this already and can shed some light as to how things went for you.
Here's to a big STEAK DINNER on the other side! (Hey, I can dream...right?!)
I take Brennen to a wonderful Pediatrician, but I don't think he took me very seriously at the beginning of all of this when I would try to explain to him that Brennen was not eating. I think he thought that I was just another overly concerned first-time mom who had a picky eater on her hands. Some of the frustrating advice I would receive sounded something like: "He'll eat when he's hungry!" or "Just put whatever you are having for supper in front of him and if he eats it fine, if not, he gets nothing until the next meal time." For your typical picky eater who just won't eat his/her vegetables for that day, I could see using those strategies. But Brennen was different. He wouldn't even eat a cookie if I put it in front of him, let alone broccoli!
The only solid foods I could get into Brennen was peanut butter and jelly sandwiches or toasted cheese. I would make both sandwiches on whole wheat bread and try to sneak some vegetables or protein in the toasted cheese. He would usually detect them and then not eat the rest of that meal. The thought that might be going through your mind is, maybe he's not eating due to a defiant behavior. Let me assure you, that I am a pretty structured person. I run my special education classroom that way and my home too. After being in the teaching profession for 10 years now, I have seen just about every type of behavior there is...I 'm not easily bamboozled!
My special ed background began to prove itself worthy, now for personal reasons. Brennen definitely has some hypersensitivity issues. I began thinking back to when Brennen was a baby and how he never put any toys or things in his mouth. (Baby proofing our house was pretty easy with him!) Brennen hates...and I mean hates...having his toenails trimmed. He isn't a fan of walking around barefoot (inside or outside). He is definitely a sock boy! Brennen is also not a fan of flying bugs, but is the first to pull an earth worm out of the ground! I think it is the sensation of the bugs flying around his ears (the sound the wings make), which I can't say I blame him...who likes that sound?!
But I digress...back to the sandwiches... As I was saying, he would eat sandwiches. We noticed that Brennen would never tell us he was hungry. He would seem as if his stomach was bothering him. This was difficult because with Brennen being so young, he was unable to tell us what he was feeling. Brennen also suffered from chronic constipation which didn't help his appetite either. Our Pediatrician referred us to a Pediatric Gastro-Enterologist at the Cleveland Clinic. She ran some bloodwork tests and from the tests we discovered that Brennen had Celiac Disease.
People with Celiac Disease are unable to digest the proteins found in wheat or gluten. Their bodies have an intolerance to these proteins. Brennen's diet can not contain anything with wheat, barley or rye (these are the main ingredients in products that would contain gluten).
The pieces of our little Brennen puzzle were finally being put together. No wonder he acted as though he wasn't hungry! His poor little stomach was irritated from all of the gluten that was in his diet. We began seeing a Pediatric Nutritionist who then referred us to a Feeding Therapy Program through the Cleveland Clinic. We have been receiving outpatient therapy but are discovering that because of Brennen's background with his hypersensitivities and his anxiety about eating food due in part to how food has made him feel for the past 3 years, he would best be treated in an 8-10 week day feeding program. Brennen and I will stay in Cleveland Monday-Friday and he will receive intense feeding therapy to overcome his sensitivities and anxieties over food. We will be able to return home on the weekends.
This will not be easy for Brennen (or the rest of our family) but we truly feel as though this therapy is an answer to so many prayers. Thank you for reading my post and following along with our journey.
I will be posting updates to my blog on Brennen's progress, his setbacks, the good, the bad and the ugly..it will all be here. I hope you will follow our journey and share it with someone who maybe going through the same things we are. Or maybe you are someone who has gone through this already and can shed some light as to how things went for you.
Here's to a big STEAK DINNER on the other side! (Hey, I can dream...right?!)
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