Saturday, December 26, 2009

Saturday, December 26, 2009

Hello Everyone!! I wanted to give some updates since I haven't made a post in quite awhile.

I am back to work which has been nice to get back into our normal routine, but has also been difficult with trying to balance Brennen's feeding needs with household duties and duties of work too. But, we are surviving!

I am getting the hang of pureeing Brennen's food. I am gettinig quicker at it and my ability to get the food smooth is also improving. It is just very time consuming. I usually puree enough food to last the week and then try to save the majority of my pureeing for the weekend.

Brennen continues to eat really well at home. He will tell me when he is hungry, which is still something that continues to take me by surprise when he says it. Prior to our therapy, he would never tell me when he was hungry. Honestly, I don't think he ever knew what that feeling was. He had a lot of stomach pain and discomfort, and I don't think he could tell if he was hungry or not.

We had a wonderful Christmas. Our family came to our house this year because it was much easier with Brennen's eating schedule to have it at our house.

We are continuing with our weekly appointments at the Hospital, although we have had to miss 2 of the 3 appointments scheduled due to illness. First, I got the flu and then Brennen had a sinus infection. For me, I think I was just exhausted. The first weekend we were home, I got sick. But everyone is doing fine now.

The feeding team is holding off on trying anything new until after the holidays. We will also begin potty training sometime in January.

Well, thanks for checking in on Brennen's progress and I will update in January as we begin adding new foods.

Merry Christmas and Happy New Year!!

Thursday, December 3, 2009

Thursday, December 3, 2009

We are officially done with being an in-patient! Today was our last day for being admitted to the Day Hospital. We will now continue with our weekly outpatient appointments.

I feel relieved and exhausted at the same time. I think the stress of the entire 10 weeks is catching up with me. I am glad I have the weekend before returning to work on Monday.


This program has been an answer to so many prayers. It is amazing to see Brennen's progress now from when we started the feeding program 10 weeks ago. Here is what Brennen is eating at this point in time: (all items at this point are pureed- unless noted)


*chicken *ham *turkey *hot dog *sweet potatoes *green beans *carrots *mashed potatoes *mixed vegetables *peaches *pears *mixed fruit

Items not pureed:
*applesauce *baby rice cereal *yogurt *plain potato chips *gluten free pretzles *shredded cheddar cheese

Quite a difference from before we started!

It is also amazing that Brennen and I have both remained healthy throughout the entire therapy. Another answer to prayer. Thank you to our family and friends who respected the fact that we needed to be hermits for awhile!

Now that we have completed the daily feeding therapy program, I will probably not be posting everyday as I had been. However, I would like to keep everyone updated on Brennen's progress because I know there have been many people invested in Brennen's therapy as well. I plan on making weekly updates to inform our family and friends on how Brennen is doing with his transition to his typical daily routine.

Thanks again everyone for checking in on Brennen's progress and for your thoughts and prayers during his therapy. We have felt the support and prayers and that has helped to get us through.

Our therapy worked and I am so glad we were able to give Brennen the wings he needed to fly. He is a different boy now from when we started. This is really a new beginning for Brennen and for our family.

I am so excited for him...

Tuesday, December 1, 2009

December 1, 2009

Wow..it feels like forever since I have posted on Brennen's progress... I was going to post over the weekend, but then became very preoccupied with getting my house back in shape! (9 weeks away from home had taken its toll!) We have made it to Week 10!!

We had a wonderful Thanksgiving! Brennen ate turkey, sweet potatoes, mixed vegetables, and peaches (all foods were pureed). He did wonderful! Even with the differences in textures from how smooth the kitchen staff at Day Hospital purees to what my processor can do... He still did an amazing job with eating his meals very calmly all weekend.

We had a wonderful weekend at home. It was so nice to not have to rush back up to Cleveland Sunday afternoon. I loved being home and getting laundry done in my own machine and not feel as though I have to babysit my clothes for fear somebody might move them out of the machine!

It was great to have the weekend for Brennen and Sophia to be together. They are kind of going through an adjustment period of being together again.

We were really able to see Brennen's progress this weekend. We went to my brother's birthday party on Sunday. There was a large group of people there and Brennen handled that very well. Tim and I were talking about how last year at this time, he would have had a very difficult time with that. We can really tell that he is beginning to feel better. He is eating so much better and that is allowing him to be able to handle life's experiences better too. I am sure as Brennen matures, he will be able to handle more too.

Life is good right now!

My sister-in-law made the drive with me today so she can feed him and receive input as needed from the feeding team. She has already fed him once today and is doing a great job. Brennen sat and ate very calmly for her.

It's another long day today but I am comforted by the fact that I get to drive home and that I don't have to spend the night up here tonight.

I will post again on Thursday..Have a good day everyone and thanks for checking on Brennen's progress!

Wednesday, November 25, 2009

Wednesday, Nov. 25, 2009

I am writing early on this rainy Wednesday morning. Brennen and Tim are still sleeping. In a few minutes I'll need to wake them up to get ready to go to the hospital. We have a short day at the hospital today and then it's back to the RMH to finish cleaning and loading up the car to come home.

Lots to do before we can enjoy the weekend!

Happy Thanksgiving everyone!! We have lots to be thankful for as I'm sure you do as well.

p.s. I'll try and post this weekend to let you know how Brennen's first Thanksgiving meal went.

Tuesday, November 24, 2009

Pictures

Hi everyone.....daddy here. Well, here it is. Chrissy and I put this slideshow together last night, it's a glimpse into some of the happier moments over the last 2 months, and gives everyone a chance to meet all the wonderful people that helped Brennen get back on track with his eating.
You'll notice him smiling in a lot of the photos, but please don't think that this entire time was full of joy. There was just as much heartache, tears, frustration and hopelessness. We're grateful that the good times have outweighed the bad times lately, but know that there's still a lot of obstacles to overcome....and losing the everyday support of the feeding team will present another challenge.
Again, Chrissy and I are just so grateful to all our family and friends, it's been a long last few months, but we think everyone is stronger for it, and most importantly, Brennen is on the right track with his eating.
God is good, ALL the time.
Grab your popcorn and enjoy the slideshow. The song you'll hear is "By Your Side" by Tenth Avenue North.
-Tim

Tuesday, Nov. 24, 2009

Brennen is doing very well today with eating. He continues to make the nurses laugh everyday.

Yesterday he was goofing around during his feeding time and I told him that I was going to have to hold his hands if he doesn't take his bite. Ms. Cheryl came into the room to help and then we realized that he had already eaten his required amount of protein for that feed so he didn't have to take any more bites of chicken. Brennen replied, "Whew! That was close!" I thought Cheryl was going to lose it! She started laughing and then I was laughing. She gets a big kick out of him and the stuff he says.

I think they are going to miss him!

Tonight Tim is coming up to spend the night at the RM House with us. Miss Sophia will be getting spoiled at Grandma and Grandpa's house. We will begin packing and cleaning the room to be able to check out tomorrow afternoon. Yay!!

On Wednesday we have a half-day of therapy and then we can return to RM House to finish cleaning and check out. I am so excited to be able to spend the long weekend with BOTH of my kiddos!

We can do this!! We have a grand total of 2 1/2 days of in-patient therapy to go!

Monday, November 23, 2009

Monday, Nov. 23, 2009

This is my last Monday post - Wow!! Very hard to believe we are at this point. It feels as though it has gone fast, although I must say that I am more than ready to be done.

I do have some reflections of our little journey:

First concerning Cleveland Traffic:
*Cleveland drivers are a mechanics dream - drive fast then brake hard. Auto repair shops must make a killing in Cleveland.
*Red lights are but a mere suggestion.
*You better have your foot ready on the gas for when that light turns green or you'll get honked at!

And last, but not least...

And certainly more importantly...

*The Lord answers prayer. A mother knows when something isn't quite right with her child and it is so important to keep pursuing to find the help you know your child needs.

We could not have come this far without the help we have received here at the hospital. They have been so thorough with Brennen's care. Nothing was overlooked. Our medical bills are beginning to roll in at this point and it really has been worth every cent.

Today in feeding, Brennen gagged on some carrots that were not quite smooth enough and then ended up vomitting. That was the first time he has done that in awhile. He recovered though and ate his peaches and drank some milk. He's so sweet..after he threw up, he asked, "Mommy, what happened to me?".

I am ready to be completed with this part of our therapy. But, part of me hates to lose the support at the same time. It is nice being here because feeding difficulties are the norm. No one questions the fact that Brennen is almost 4 and is eating pureed foods. It isn't seen as being anything out of the ordinary.

I will miss the nurses and the kitchen staff who purees all of Brennen's meals and packages them into neat and organized little containers.

Well, if nothing else, we have taught everyone (and ourselves) a little more about Celiac Disease and hypersensitivities.

Thanks for following along everyone.. I am working on a slide of some pictures to show of all of the wonderful people who have helped us during our stay. Well, to be fair, it will actually be Tim who will be working on the slide show. I just took the pictures!

I will post more tomorrow!

Friday, November 20, 2009

Friday, Nov. 20, 2009

It's Friday!! Woo-hoo!!

I am back at the RM House getting things packed up for the weekend. I just picked up my last weekly schedule of meals and activities for the Ronald Mcdonald House for next week.

Next week is filled with meals and special Thanksgiving activities. So very special for the families who are staying here. Lucky for us, our time here is nearly over. Next week is a short week for us..we will be checking out on Wednesday.

I am looking forward to spending time with my family at home this weekend and knowing that this will be our last weekend where we have to hurry back up here on Sunday afternoon. That Sunday is always the hardest!! For the first week of December, we will just drive the two days of therapy.

I began taking my fall decorations down from our room and putting them in a box to go home. As I was placing them in the box, I thought to myself, the next time I get these out, Brennen will be nearly five and I wondered what he would be eating at that time. I am hoping it doesn't involve my processor!!

Brennen had another great day and he is taking a nap back at the Day Hospital. He ate broccoli with cheese today. Little man..so proud of him!

Well, back to packing and loading up the car. Have a good weekend everyone!!

Thursday, November 19, 2009

Thursday, Nov, 19, 2009

Today is a great day for a nap...the rainy weather just screams, "Nap Time!". This is what Brennen is doing right now. If there was an extra bed, I would probably be doing the same thing.

I had my parent meeting today and the feeding team is very pleased with Brennen's progress with eating and his weight gain. He was 33 lbs when we entered the program. He is now a little over 35 lbs; A very typical weight for his age group.

We made a "real-life" eating schedule in our meeting and discussed how on next Wednesday we get to leave at 12:00! Yay!! That will give us the afternoon to get checked out of our room and be on our way to go enjoy the Holiday weekend.

My heart is full and happy! Brennen will be able to enjoy a Thanksgiving dinner in comparison to last year's meal of baby rice cereal!

I think I will go find an empty chair somewhere, curl up and watch some tv...not quite the same thing as a bed but it will have to do.

I will post more tomorrow!

Wednesday, November 18, 2009

Wednesday, Nov. 18, 2009

Brennen ate 8 ounces of food for lunch today! Amazing!! His meal consisted of: 3 oz of peaches,
2 oz of turkey, 2 oz of sweet potatoes, and 1 oz of green beans.

I was talking with Nurse Barbara today about how good he ate and she said jokingly, "He's cured!". In a way I feel like that too. He has come along way from where we started. He still has a ways to go before we transition to solid foods, but Wow!

Next week, at this time we will be checking out of the Ronald Mcdonald House; Our home away from home. I was thinking about all of the people we have met during our stay. We have met families from Illinois, Georgia, California, Marlyand and Kuwait.

When you go through an experience like this, you pay alot more attention to the little donation boxes in Mcdonald's for the Ronald Mcdonald House Charities. It really makes a huge difference to be able to stay in this house and have your meals provided and just have a comfortable place to land.

Tim and Sophia are coming up to visit for our last Wednesday visit! We're almost done!!

Tuesday, November 17, 2009

Tuesday, Nov. 17, 2009

Eeewww..I hate centipedes!

There was one in the feeding room today crawling on the wall. Brennen saw it and said, "What is that?" I was feeding him, so I turned around and saw it on the wall. Inside I was thinking, we are running out of this room right now! But I remained calm, and Brennen covered his ears! He does that whenever he is afraid of something or he's not sure if it is going to make a loud noise!

Brennen kept eating with his ears covered and his eyes on the ugly bug. What progress!

When he was finished eating, Nurse Barbara came in and we were laughing because she said she was glad I was feeding him. She said if she were in the room, they would have had to leave because she can't stand centipedes!

I did send the centipede to heaven via my shoe...

Let's hope he didn't call his friends for the next feeding...

Monday, November 16, 2009

Monday, Nov. 16, 2009

We are beginning our last full week of feeding therapy. This is Week 8 and we have completed 80% of our therapy. (In teacher-talk we are at a solid "B" grade)

Brennen is doing really well for a Monday, probably one of the better Monday's that we have had. I think we are beginning to see the positive effects of the medicine he is taking, and I think he just knows the routine.

Today Brennen ate a new vegetable...Green Beans! He did really well with it. He told Ms. Cheryl when she was feeding him that he wasn't going to turn his head away. She laughed and told him what a big boy he was!

Despite all of the wonderful progress, our whole family is growing increasingly tired of the strain of the program. Brennen has asked me after every meal today if we were going to go home now to see Daddy and Sophie. Tim said the first word out of Sophia's mouth this morning was "Mama?". They are feeling the strain of the program now, but are continuing to be the little troopers that they are.

This has been something we have prayed about for a very long time and are so glad this opportunity was available to us. I don't know what would have happened if we did not go through with this therapy. He just seems like a different kid now from when we started. He feels like playing now and his little face looks brighter to me. His hair looks different and he just acts like he feels better.

We thank God for answered prayers and for His timing.

Friday, November 13, 2009

Friday, Nov. 13, 2009

It's a happy Friday! The sun is shining, Brennen is having another great day today, and we get to go home for the weekend. Can't ask for much more than that.

I am back at the Ronald Mcdonald House getting things packed up so we can leave after his last feed. Brennen is taking a nap right now back at the Hospital.

Today in Occupational Therapy, Brennen rode a big boy bicycle with training wheels. He was doing really great! He looked so cute pedaling his bicycle down the hospital hallways. His therapist is recommending we continue with some outpatient therapy and I agree. I have noticed a difference since he has been working with OT. She also said that karate would be a great activity for Brennen. It is a great activity to reinforce self awareness of your body and movement. Picturing him in a little karate outfit punching his little fists in the air just makes me smile!

Well, I better get packing..Have a good weekend everyone!

Thursday, November 12, 2009

Thursday, Nov. 12, 2009

I am feeling kind of tired today. I think we are both ready for the weekend to be here. We have just about completed Week 7 of our therapy.

Pausing for a moment to look backward to where we are now, I would definitely say we have made the progress that was desired. Brennen is now consistently eating a complete pureed meal consisting of meat, vegetable and fruit. He is eating a balanced diet!!

I was telling Dr. Bauer about Brennen's continual bowel troubles and she is recommending putting him back on Miralax for a few days to completely empty his bowels so I am not constantly changing his pull-up every half hour to forty five minutes. Sounds like a good weekend project...

Being in therapy, life is very simple..we get up..we drive to the hospital..we drive back to the RM House and then go to sleep.

Returning back home is going to be wonderful, but I also worry about how we are going to be able to keep up Brennen's progress. Therapy works wonderful when you have nurses, a staffed kitchen that prepares food for you, and a strict schedule that doesn't get interrupted by life's happenings.

Dr. Cuddy mentioned that prior to us being discharged they will give us a "real-life" eating schedule. They don't expect me to feed Brennen 5 times a day, like we do here.

I am relieved that we continue the outpatient therapy until Brennen is eating solid foods. We will have our support system for a long time; which I am very glad about.

I am so ready to go home..but the realization of no nurses giving me breaks and no pureed food already prepared has me a little weary.

Kind of feels like when we were bringing Brennen home from the hospital for the very first time..the realization of no nurses at home..no little nursery that I could bring him to at night while I got my full night's sleep! It was sink or swim time...and we swam.

We will swim again I'm sure, but I could use a boat if anyone has one?!

Wednesday, November 11, 2009

Wednesday, Nov. 11, 2009

Brennen is doing really well again with eating today. Everyone is very pleased with his progress. I feel as though we have accomplished what we set out to do.

I had my parent meeting today and we discussed Brennen's progress and how well he is doing. We have one more 5 day week and then we will go to 3 days for Thanksgiving week and then our last week will be 2 days. They want me to introduce some new foods next week. We talked about adding some more vegetables. So, next week we will add green beans and broccoli with cheese.

Tim and Sophia are coming up to visit tonight. Brennen and I are always excited for their visit.


p.s. Happy Veterans' Day to my father-in-law and any others who have served our country!!

Tuesday, November 10, 2009

Art of Pureeing Food 101

Okay, so I found out the secrets to Pureeing: A $600.00 professional blender and a Chef :0)

I think the blender they use could puree a shoe without even a blink. But he did tell me the hotter the water you use to blend the food with the better. And the ol' standby recipe advice that you can always add more water, but it's alot harder to take it out; so start with little amounts and then gradually increase as needed.

I don't know if my little food processor is able to do what it is I am asking it to do..I think I am going to need something in between my little dinky processor and the big papa blender that the hospital uses.

I'll figure it out, it will just take some playing around with..but it was nice of the hospital to let me watch them do it. I even got to wear the fancy hair net and gloves, I looked very official.

Statistics for Celiac Disease

FYI: Here are some statistics I found for Celiac Disease:

It's estimated 1 out of every 133 people have celiac disease
Out of every 100 people, 97 remain undiagnosed (horrors!)
Over 3 million people have celiac disease
It takes an average of 8 to 11 years for a US celiac to be properly diagnosed (oh horrors again!)
Up to 10% of people with celiac disease also have type 1 diabetes (another autoimmune disease)
Women have celiac disease at a ratio of 3 to 1 when compared to men
There are over 250 possible symptoms related to gluten intolerance

Tuesday, Nov.10, 2009

We seem to be on a roll now (a gluten-free roll!)..alot of good days..I think Brennen's little system has adjusted to all of the new foods he is eating and he is eating really well now. He will still put up little fights now and then but overall he is eating much better.

I will get a lesson in pureeing today at 2:00. The kitchen staff will show me how they can puree protein so smooth. I will let you know the little secrets..stay tuned! The suspense is killing you, I know..

I want to send a thank you again to all of our family, friends and co-workers who send us your prayers, thoughts, well-wishes, and cards. They truly mean so much and it helps to keep us going. It has been a long haul but I wouldn't change a thing. It was definitely something we had to do for Brennen's health and my sanity!! Thanks again everyone :0)

p.s. Don't forget to check back for the Art of Pureeing Foods 101...

Monday, November 9, 2009

Monday, Nov. 9, 2009

What a beautiful weekend! The kids had a chance to play outside and help Daddy rake the leaves. It was nice to get some fresh air and "blow the stink off" as my mother-in-law would say!

Tim and Sophia made the trek back with us on Sunday afternoon and we all played in the tree house that's on the Ronald Mcdonald House property. You don't actually have to climb a tree to get into the house, in case you were wondering the logistics of that picture!!

All of that fresh air helped us all to sleep well. I had to wake Brennen up this morning. Usually he wakes up when he hears me getting ready in the morning. Not this morning...He was out cold. I hated to wake him because he looked so peaceful.

Once I got him up and was getting him dressed, he said, "Mommy, you're my best friend." I said, "Yes, Buddy, Mommy loves you." Aahh..what a great way to start a Monday morning!

Brennen ate three good meals today and then went down for an early nap. He still was pretty tired. He is doing really well with having me feed again, which I am glad.

I mentioned to Ms. Cheryl that I would like to watch the kitchen puree his food so I can see how they do it. When I am pureeing at home, I can not get the meat as smooth as they do here...it's a mystery that I hope to solve!

Things are going well today..can't ask for much more on a Monday afternoon!

Friday, November 6, 2009

Friday, Nov. 6, 2009

It's a beautiful Friday outside and we are looking forward to making the drive home in the sun! It seems like the weather has been rainy whenever I drive home.

Nothing terribly exciting has happened today which is kind of nice. Brennen is doing good with eating today and is now taking a nap. I am back at the RM House getting our things together to go home. I like to pack when he is napping and then all of our stuff is in the car, so after his last feed we can just leave from the hospital.

This will be a good weekend to enjoy some outside time..while it is still nice. I have a feeling this might be our last good weather weekend for awhile. Enjoy everyone!

Thursday, November 5, 2009

Thursday, Nov. 5, 2009

Today is going very well. I got to feed Brennen this morning for his first 3 meals. He ate pretty good and he was relatively relaxed. They will have me feed at least 3 meals a day and then I can take a break for the other 2 feedings. I felt productive today and that was nice.

I had my parent meeting today and we talked about our plans for the remaining weeks. It is exciting that we are at this point in our therapy where we are looking at the end. Our last week to stay at the Ronald Mcdonald House will be the week of Thanksgiving. We get to check out on Wednesday of that week. For the first week of December, I will just drive the two days of scheduled therapy. Yay!! We also scheduled our outpatient therapy appointments through the month of February because they fill up fast.

It felt like a very productive day.

My Great Uncle Carl gave us a bag filled with some toys for Brennen and Sophia to play with up at the Ronald Mcdonald House. He also gave us some Snap Bracelets to hand out to the kids staying at the RM House. Brennen gave them out to his friends. His friends are Arabic (their mom was who blew Brennen a kiss) and they had never seen those types of bracelets before. They loved them!! Their parents kept asking me (in broken English) how much they were and where they could get more!

Thanks Uncle Carl!! The bracelets were a big hit!!

Have a good night everyone..I will post more tomorrow!

Wednesday, November 4, 2009

Wednesday, Nov. 4, 2009

Every Wednesday in preschool, they have Music Therapy. Brennen got to play the guitar today and he loves it!! I think we may have a future musician on our hands.. Ms. Betsy was impressed with how well Brennen did with playing the guitar and mimicking rhythms that they were doing.
I would love it if Brennen learned how to play the guitar or any instrument because I think that could be a wonderful outlet for him.

He seems to be doing very well today. He is eating good despite the change of nurses today (Miss Darcia was feeding him this morning) and the change of environment (we ate in Day Hospital instead of the feeding room because they are painting). Those little changes would have thrown a big monkey wrench in the day when we first started. Our little Brennen is maturing..I am so proud of him.

I am excited to see Sophia and Tim tonight. Tim says she has been asking for me lately. She'll say "Mama?". I just wonder what is going through her mind..She probably is thinking what kind of a crazy schedule is this?! She has adjusted very well. Tim has done a really good job at keeping her routine as normal as possible. She hasn't adjusted to the time change so well though! Tim said she was up at 5:30 this morning and he could hear her in her crib calling for him, "Daddy? Daddy? Daaadddyy!" She is so stinkin' cute!

Well, I will post more tomorrow. Tomorrow afternoon I begin feeding Brennen again. I think we are both looking forward to that. Brennen has been asking me the past couple of days, "Are you going to feed me today Mommy?". I think it will start to feel more normal for both of us when I get to feed him again.

p.s. When we were getting in the car to come to Day Hospital this morning, we could hear the birds chirping. Brennen said, "The birds are tweeting because they like me!".

Tuesday, November 3, 2009

Tuesday, November 3, 2009

Today has gone much better than yesterday. Brennen has filled a Pull-Up! Yay for Poop!! He is feeling much better today, for obvious reasons...

He has eaten 3 good meals so far today and even ate his new food of turkey with no problems what so ever.

Yesterday, we took Brennen to go see Dr. Steffen and she did an x-ray and took some blood work to make sure that there is nothing else going on that we are missing. From the appointment, we discovered that Brennen is not constipated, he is withholding his stool because he doesn't want to go to the bathroom. The past two nights Brennen has woken up more times than I care to count to try and go to the bathroom....or try to not go to the bathroom..not sure which is which anymore...

Anyway, today I got to meet with Dr. Cuddy and Dr. Bauer about what to do with our little Brennen, who is so very complex with all of his needs: anxiety over food, anxiety over bowel troubles, Celiac Disease that causes his little GI tract to flare up, and an over-all hypersensitive guy all the way around.

We are going to try and put Brennen on a very mild dosage of some medication to help try and lessen some of these stressors for him. Our plan is to keep him on the dosage for 6 months to help Brennen "get over the hump" of eating and beginning toilet training (in January). Medication is not always an answer, but in Brennen's case I really think it is going to help him settle down a little bit; at least to help him relax enough to master these milestones.

The therapists in Recreational Therapy and Occupational Therapy are going to begin doing some role-play with dolls of how do we keep ourselves clean in the diaper area and talk about going to the bathroom. Brennen is very anxious about me cleaning him..it takes two people to change him..he is kicking and crying because he doesn't want his bottom to be touched. How do I change him by myself at the RM House, you ask? I'm Super Woman..didn't you know? :) Well, not really...I just have to be really quick!

I am so pleased with the Doctors in this program. They have really listened to me and my concerns and have been really sensitive with Brennen and have a true understanding of what he is going through.

I feel good..I can breathe again..

Thank you Lord for giving us the answers we needed...Amen

Monday, November 2, 2009

Monday, Nov. 2, 2009

Last night Brennen woke up 4 times with cramps and feeling like he has to go to the bathroom; with not much production for his efforts. I hate you Celiac Disease!!

Now that I got that out of my system....

I took him to Day Hospital this morning and he did eat his breakfast but then I was changing his pull-up about every 30 minutes.

After many attempts I got a hold of Brennen's Gastro-Enterologist at the Main Campus of the Cleveland Clinic and she is going to see him at 1:00 today to check him out and see what's going on with his poor little GI tract.
.
My dear hubby is driving up today to help give me and Brennen some support because I am so frustrated I just don't know what to do to help Brennen. We always seem to go 2 steps forward and then 3 steps back...This is why we could never get anywhere with feeding at home...we were always battling his little bowels from one extreme to the other and in both cases he never felt like eating.

Dear Lord, please give us the help we need today...Amen

Friday, October 30, 2009

Friday, October 30, 2009 "Halloween Parade"



Today is Friday!! Yay!! Good Luck Red Riders!! Pardon the interruption while I take a moment to promote my husband's blog: For more information on Red Rider Sports visit http://www.redridersportsblog.com/

Now back to our regularly scheduled program!! Today seems to be going better for Brennen. It could be the fact that he gets to wear a train costume today, but whatever, we'll take it!! He got to pick out a costume in RT (Recreational Therapy) yesterday and this one was perfect for him. He loves it!! He took a nap with it yesterday and then fell asleep holding it last night too. I think it is going to be hard for him to give it back.

Today the children of the hospital get to participate in a "Halloween Parade". They will visit different areas within the hospital. No candy is given out; instead they pass out fun little trinkets like spider rings, pencils, etc.

He is excited about participating in the parade. He looks so cute in his costume!! It is nice that they can give the kids a break like that and let them participate in something fun. To avoid all of the children being exposed to one another, they are keeping the groups small; to try and protect against illnesses.

Well, have a good day everyone!

Trick-or-Treat and a Happy Weekend to you!!

Thursday, October 29, 2009

Thursday, Oct. 29, 2009

Where do I begin?...

Today was just one of those days...actually this whole week has been filled with those days....It started at breakfast and just down -spiraled until our very last meal. Today we had crying, kicking, eating and then more crying, kicking, eating, and then last but not least crying, kicking and eating followed by vomitting. It was a GREAT day, let me tell ya!

I had my parent meeting today and we discussed how on Monday of next week, we will begin pureed turkey and that will be our last food introduced during our inpatient therapy. They are afraid to throw any more at Brennen because he is starting to become tired with the program and at this point unless you walk a fine line you can become counterproductive in what you are trying to achieve. Thursday of next week, I will begin feeding him during our therapies.

We have completed 50% of our program and are beginning to look at how we can phase him (and me) back into our normal everyday lives.

Dr. Cuddy looked at me today and told me that I looked tired and that I should go take a break for awhile. So after Brennen went down for his nap today..I got out! I went shopping for a few hours and then returned to the hospital before Brennen even woke up from his nap. That seemed to refresh me a little. It can get very tiring when you're whole world is watching Brennen having difficulties all day long. It was nice to get out and feel the sun...(what there was of it!!)

So if you were looking for my post this afternoon and didn't see one..this is why! I was taking a personal break!

I am so very glad that tomorrow is Friday..it has been a very long week.

Have a good night everyone and I will post more tomorrow.

Wednesday, October 28, 2009

Wednesday, Oct. 28, 2009

Today is Wednesday...although I keep having to remind myself that it is not Thursday.
Tim and Sophia came up last night. They usually come to visit on Wednesday evenings. We ordered chinese take-out and just ate it up in our room. I gave both kids a bath and then Tim and Sophia left for home. It felt like a normal night except for the fact that Tim and Sophie had to leave. It was nice to have some "normal" family time during the week. But now today, I keep thinking it is Thursday so this week seems a little bit longer to me!

Brennen ate mashed potatoes today! He had 10 small bites of mashed potatoes after much convincing and threats of hand-holding, but he did eat it! Brennen gets himself so worked up and anxious over eating that he will sometimes make himself sick. He did a good job of calming himself down and he was able to relax enough to eat his mashed potatoes and the rest of his meal relatively calmly.

Today as I was watching him through the two-way mirror, I just started crying. It is so heart-braking to watch him day after day struggle with anxiety over food and then on top of that deal with intestinal troubles too. I got to talk with the pediatrician on staff here at the hospital. She is fantastic and Brennen likes her too. She thought Brennen's GI tract troubles stem from his new diet and his body is adjusting to the new foods he is eating. She is recommending the feeding team add some yogurt to Brennen's diet in addition to some pureed bananas to help sort of calm-down his system. Brennen's system is so sensitive, partly because of the Celiac Disease. Prior to beginning the feeding therapy, Brennen's little system would go back and forth from constipation to diarrhea. We could never get to a normal routine.

We will get there..I know we will...It is just exhausting..I am looking forward to going back to the Ronald Mcdonald House and just resting tonight.

Tuesday, October 27, 2009

Gluten Free Restaurants & Bakeries

Here is a link to a website that informs its visitors of all of the bakeries and restaurants that offer Gluten-free foods in a particular state. You can click on a state of your choice to find restaurants that offer gluten free foods for that area. This would be very helpful, even while traveling.

www.glutenfreeregistry.com

p.s. I found a website of a bakery in the Cleveland area that offers homemade gluten-free breads and desserts. Yay!! Once Brennen begins eating more solid foods, we will definitely have to give that a try.

Tuesday, Oct. 27, 2009

I am so bored....

Brennen is in preschool right now with Mrs. Betsy, his most favorite part of the day. I asked him today if I could come to preschool too and he said, "No, I'll just see you later!" He didn't want me to come! I guess he needs a break from me and wants Mrs. Betsy all to himself. Sooo cute..

Meanwhile, I AM SO BORED!! I have been to every inch of this hospital and now I don't know what else to do..I have read every magazine and book I brought and my eyes are a little cross-eyed from all of the word searches.

On the plus side, Brennen's little bum is looking much better today. The decrease in fruit is helping! At some point in time we will hit a happy medium with his diet and bowel movement frequency!! Poor little guy.. I just feel so bad for him. It just seems to be one thing or the other..

He gagged on the chicken he was eating today because it wasn't as smooth of a texture as he was used to. He did continue eating it though which is a huge break through in and of itself. Prior to starting this therapy..he would have not wanted anything more to eat after he would gag. We are definitely seeing little signs of improvement with him and it lifts my spirits when those little moments reveal themself.

Okay..I am going to go walk the halls one more time and try to relieve some of my boredom..

Monday, October 26, 2009

Monday, Oct. 26, 2009

Every weekend it gets harder and harder to leave on Sunday afternoon to make the drive up here, but the good news is we are half-way done. Today we begin week 5 of our 10 week therapy program.

Prior to starting this program, Brennen had a lot of trouble with his bowels being constipated. So the feeding team wanted to address this concern by increasing his fruit intake to 3 oz of fruit per feed. Brennen eats 5 times a day, so that means he was getting 15 oz of fruit per day. That's a whole can!! Well all of that fruit has really cleaned him out, so to speak. He is now on the other end of the poop spectrum. So we are cutting back on the fruit to give his bowels a rest.

The feeding team and nurses are very sensitive to Brennen's needs, which as a parent I really appreciate. They are always tweaking or fine tuning the plan to help fit Brennen's needs. They realize the human component of the therapy. He is not just a little lab rat to them! If Brennen needs to take his nap earlier because he is tired, they accomodate for that; if his dietary needs have changed, they accomodate for that too.

Brennen is napping right now. He seemed tired today. Mondays seem to be a transition day for us. It kind of takes him a day to get back into the routine of things and then by Tuesday, he is usually fine.

I am tired today too.. Today definitely feels like a Monday..I think I will go get myself some caffeine from the cafeteria.

I will post more tomorrow. Have a good day everyone!

Friday, October 23, 2009

Friday, Oct. 23, 2009

AAhh.. the end of Week 4..we are kind of in autopilot mode now. Brennen is really in an eating groove right now and that helps make the days go fast. He loves all of the different therapies he is going to. Our room at the Ronald Mcdonald House is decorated with all kinds of different pumpkin crafts he has made in either preschool, recreational therapy, or occupational therapy. It is great!

The Occupational Therapist gave me some ideas to try to help de-sensitize Brennen's feet before we cut his toe-nails. If you remember from earlier posts, Brennen hates to have his feet messed with; including trimming his toe-nails. She suggested taking off his socks and have him jump up and down to put some pressure and feeling on his feet. He can jump up and down on the bed, the floor, a trampoline, whatever; the point is to put some feeling in his feet before we try and trim his nails. She said this exercise could take up to 15-20 minutes, especially the first time we do it.
Once his feet have been sort of "de-sensitized" then we can trim his nails.

I will try that this weekend because that has always been a battle. Another assignment for this weekend is to feed Brennen ham. I will be a mad scientist in my kitchen trying to get ham as pureed as I can. This should be interesting... Feeding therapy is much easier when you have a staffed kitchen and nurses available.

p.s. I love camera cell-phones. Kristin will take videos of Sophia and send them to me. I love being able to see her throughout the day. Thanks Kristin!!

Have a good weekend everyone! Let's hope everyone stays out of the hospital..

Thursday, October 22, 2009

Thursday, Oct. 22, 2009

Today in therapy, we are alternating between chicken and ham for the feedings. They were worried that if Brennen didn't see chicken for awhile that he would be anxious when he saw it again. So, he has eaten a protein of chicken or ham at every feeding today. We are up to 1-2 ounces of protein at each feeding. Which is wonderful!!

Every Thursday is my parent-meeting where I meet with the feeding team and we discuss the progress Brennen is making. At this time we also talk about the future plans for the following weeks ahead. At Brennen's next feeding today, they are going to introduce carrots. I am excited because I think he will like them. They have a sort of sweet taste to them; which he seems to go for. Sweet and Salty are his favorites.

Next week, Brennen will be introduced to mashed potatoes. I have to admit that this one will be sort of sentimental for me because this was the first table food we tried when Brennen was a baby. This is the food that sort of sent my wheels turning that something isn't quite right here. To see him eat mashed potatoes will be emotional for me I think.

The next protein down the pike is turkey. So by Thanksgiving we will be able to eat a complete pureed meal!! Turkey, mashed potatoes, and carrots!! Maybe we can do some pureed pumpkin with some cool whip for dessert. My heart is so happy!!

In 2-3 weeks I will get to feed him again. I am excited for that too. We are definitely moving in the right direction with our therapy and I am very pleased.

Last night the Ronald Mcdonald House had a little Halloween Party put on by some of the volunteers. They passed out candy bags and the kids got to draw on orange paper. The volunteers were going to decorate the house with the kids' drawings.

Brennen wasn't too amused because he doesn't eat candy. He had more fun outside riding a tricyle and playing in the tree house with Sophia. That is better for him anyway!! I love to watch them play together; even more now. They are my pride and joy...

Wednesday, October 21, 2009

Website for Gluten Free Recipes

Here is a website a mother gave me that I met here at the Day Hospital. Her son also has Celiac Disease.

www.glutenfreegoddess.blogspot.com

Wednesday, Oct. 21, 2009

Today is Wednesday!!

Lots of good things happening today:

1. Tim and my 9th Anniversary is today! We get to spend it with all of our friends at the RM House. That's okay...we got to go out to dinner last weekend. We always go to the same restaurant when we are celebrating something. It is the restaurant that we had our first date: Red Lobster. Nothing says romance like cheddar and garlic baked biscuits. But, we love it!!

2. Tim, Sophia, and Grandma Becky are coming to visit. The weather is so nice that it would be nice to walk around the gardens of the house tonight. Brennen and I did that last night. He enjoyed getting outside. They have a big tree-house that he liked playing in and I am sure Sophie will like it too.

3. Last, but not least, the hospital has taco bar for lunch today in the cafeteria! Yum-O!! I am missing Senor Panchos! When I was coming home I noticed that they have a big tent set up for people to eat outside. Looks like progress is being made and they will open soon. Can't wait!!

Some updates today:

My dad did get to come home yesterday and he is doing very well. He said he is already bored. But the doctors told him he needs to stay home and rest for atleast 1 week. If you know my dad, you know that is very difficult for him. He is already talking about driving to breakfast on Friday to meet some friends. Now we need prayers for my mom, because he is driving her crazy!!

Brennen continues to do very well with his new food. He loves ham!!

Have a great day!!

Tuesday, October 20, 2009

Tuesday, Oct. 20, 2009 (a.k.a...Ham Day)

Brennen is doing wonderful today! He has had two feedings already this morning and at both feedings he ate his ham like he has been eating it forever.

I talked with him this morning as we were getting ready to come to Day Hospital and Ms. Barbara talked with him as she was feeding him about how he was going to try some ham today. Brennen took his bites with no anxiousness at all. He ate all of his 10 bites!

I think Brennen is beginning to realize that he CAN do this and food is not hurting his stomach anymore. Brennen is much more regular now in terms of going to the bathroom which also helps how is stomach is feeling.

We are beginning to see signs of progress and it feels good. When my mom cut Brennen's hair over the weekend she noticed how is hair is beginning to look more shiny than it did before. He is getting more nutrients now from the protein. Brennen is also starting to tell me now when he is hungry. This is something he never told me in the past. I don't think he was able to recognize when he was hungry because of the way his stomach felt from the gluten and from being constantly constipated.

Brennen is in preschool right now. I am just so pleased with how well he is eating today. I wasn't sure what to expect. It is so great to see him eat something new with no anxiousness. Brennen is so proud of himself too. When he is done eating he finds the therapy team members in the hallway to tell them what he did. They always give him high fives and tell him what a great job he is doing. Brennen always smiles and runs for the elevator so he can push the buttons.

Three cheers for Ham Day...Hip, Hip Hooray!! Hip, Hip, Hooray!! Hip, Hip Hooray!!

Monday, October 19, 2009

Monday, Oct. 19, 2009

I heard from my mom and everything went well with my dad today. His heart cath procedure went fine and they did find an artery behind his heart that was 90% blocked. The doctors opened that artery and put in a stint. My dad is resting and doing well. If everything continues to go well with his recovery today, he should be able to return home tomorrow.

Brennen has also done really well today with his eating. He ate everything very calmly like he's been doing it for years.

So, all in all, today was a very good day.

The calm before the "ham" storm tomorrow....Oh, well I'll just relax now and worry about that later.

Sunday, October 18, 2009

Sunday, Oct. 18, 2009

Okay...so our weekend did not go as I had planned. PRAYERS PLEASE!!

My dad had a mild heart attack on Saturday evening. He was feeling what he thought was indigestion but then his arm began to feel tingly so he knew he better go get himself checked out; with some convincing from my mom. He is doing fine now and is at Mercy Hospital in Canton. Tomorrow morning he will have a heart cath done to determine what damage there is to his heart. The doctor seems to think that there was not much damage with this one because it was caught early. (This is his second heart attack since 1997) The doctor is guessing at this point that he might need a stint put in to open up a closed artery. His heart cath is scheduled for 8:00 Monday morning.

This has become the year of hospitals for our family! My grandfather, my son, and now my dad.
But, through it all we know God is good and is in control of every situation and every circumstance. We are so thankful that this was caught early before any major damage was done. My dad is feeling pretty good right now which I know will help with any procedures that are done and recovery afterwards.

I am just glad that ham is being introduced on Tuesday...Ham and a heart cath on the same day might just push me over the edge! We love you dad and are praying for wisdom for the doctors, a calmness for you, and a quick recovery so you can return home. No Worries!!

Friday, October 16, 2009

Friday, Oct. 16, 2009

Well, we made it to yet another Friday. It is the end of Week 3 of Brennen's therapy. We have about 7 more weeks to go.

Today was a really hard day for Brennen. As Ms. Cheryl was feeding him he just did everything he could think of to not eat. Dr. Cuddy came in and told him that he needed to start eating or she would have to hold his hands. He didn't start eating so that's what they had to do. Brennen broke into a full-tantrum with screaming, crying and kicking his feet. About 30 minutes later...he finished his 5 oz of food.

Then came the next feeding which entailed more of the same behaviors....Luckily, after this one he was able to go to Ms. Betsy and relax and paint a brown paper lunch bag which is stuffed with tissue paper to resemble a pumpkin shape. He was able to paint his "pumpkin" and add facial features to it. That really helped calm him down to be ready for this third feeding.

His third feeding went much better and Brennen ate his 5 oz of food with no hand holding. He is napping right now. I know he wore himself out. I am not looking forward to his 4:30 feed because I just know we are going to have to start all over again with him not wanting to eat. Ms. Darcia will be feeding him at his last feed and she is the nurse that is only in the Day Hospital once a week. She is really nice, but Brennen doesn't get to see her as often as the other nurses. So that just tends to make things a little more difficult for him.

It is difficult to watch when these behaviors arise; but it was much more difficult for Tim and I to be the only ones dealing with these behaviors at every meal time, every day before we started this program. I had felt very alone and frustrated... I would always think what am I not doing? What is wrong with me that I can't get my own child to eat a meal? I am a Special Education teacher for Pete's Sake!

It is so comforting for me to be up here which sounds really bizarre since I am away from home, and away from my husband and daughter. But I just can't emphasize enough how thankful I am to be up here, receiving the help and support we so desperately need. I don't feel alone anymore... I don't have to feel defensive anymore...I feel like I can breathe because I know Brennen is finally going to get the help he needs. Being here is truly an answer to so many prayers.

I know Brennen will eat one day and I will have lots of bribery for him when he begins dating! I plan on saving these blog posts and compiling them into a book to show his future wife. I am sure she will thank me for not having to have pureed sweet potatoes and chicken on their wedding reception menu.

Have a good weekend everybody and I know we will do the same!

Thursday, October 15, 2009

Link to Oral Hypersensitivity

I found a link that describes what oral hypersensitivity is:

www.costellokids.com/therapy/oral_hypersensitivity.html

This describes some of the issues we have been facing with Brennen in terms of eating.
My research has helped me understand how Brennen views food and how food feels in his mouth.

It is still amazing to me that something so natural as eating food, is NOT natural for some kids. For some kids it is the most agonizing experience. This is why we are here...

I am thankful that their are therapists, doctors and nurses whose main focus is treating children with feeding disorders.

Thursday, Oct. 15, 2009

While Brennen was eating his breakfast this morning with Ms. Barbara, he told her, "I love you!". Ms. Barbara smiled sweetly and said, "I love you too!". It was the cutest thing! He is becoming very attached to both Ms. Barbara and Ms. Cheryl. And I think they are becoming quite attached to him too.

He makes them laugh because out of the blue he will say the funniest stuff. Like, one day, he asked them, "Where are the white ladies?" Ms. Barbara just laughed! I am on the other side of the mirror red-faced and laughing too! (Ms. Barbara and Ms. Cheryl are both African Americans)

In my parent meeting today, it was decided that we are going to increase the volume of chicken at each meal to 1/2 ounce and on Tuesday of next week, they will introduce ham. That should be interesting! The next vegetable to come into play will be carrots because of their similarity in texture, taste and color to sweet potatoes. They said that helps with transitioning.

In the waiting room, I was reading Parents Magazine and they had an article in this month's issue on how to make gluten free cupcakes! It is so great to see how Celiac Disease is becoming something that more people are becoming aware of and therefore there is an increase in products and recipes that are available.

I wonder how a cupcake would taste pureed? My guess is it would still taste pretty good. That will be something we will have to try for the holidays...

Wednesday, October 14, 2009

Wednesday, Oct. 14, 2009

I am afraid to jinx it, but Brennen is doing really well today. He is eating his chicken better than his sweet potatoes. I think we are ready for something new. Let's get movin'! Put some steak on that boy's plate! Just kidding...

I also just wanted to take some time to thank all of you for your comments on the blog and your prayers. I read all of the comments and they make me smile! Thank you so much for following along with Brennen's progress. It means alot and we appreciate it.

Last night we had some friends stop by who were in Cleveland for their daughter's doctor appointment and they brought me supper. Thanks Scott and Tina! It was great to see you guys!

Tonight is Wednesday....which means two things...
1. We are half-way through the week ..and more importantly...
2. Tim and Sophia come to visit! Grandpa and Grandma Snyder are coming to visit too. It is a nice break in the week to see everyone.

p.s. I don't need the Garmin to get back and forth from the RM House to the Hospital anymore. I am now a seasoned Cleveland driver. I'm not getting beeped at anymore for my cautiousness...LOOK OUT!!

Tuesday, October 13, 2009

Tuesday, Oct. 13, 2009

Brennen is having a much better "eating" day than yesterday. The nurses tell Brennen it's time to do his hard work and he has been calling it that now too. He is doing his hard work today. I am very proud of him.

In my boredom, I have been reading a devotional book called Our Daily Bread. One of the verses spoke to me today. It said, In everything give thanks. 1 Thessalonians 5:18.

There was a prayer that said, Father, thank You that in every trial, challenge and difficulty, You are behind the scenes working things out for our good. Help us to see Your hand in everything.

Amen

All of the hard work and difficulties right now will be for the greater good of Brennen's health and overall enjoyment of food. We give thanks that we are here!

Monday, October 12, 2009

Monday, Oct. 12, 2009

Feeling a little discouraged today... It is definitely Monday. Everything is going fine with Brennen's therapies and he seems to enjoy going to them. We just can not get past sweet potatoes and chicken. Dr. Cuddy won't be in the office until Wednesday so that is when the feeding plan gets re-looked at.

Everyone is so patient with him and they are great. I am on the other side of the mirror, screaming in my head..JUST EAT IT!! It is just very hard to see how we will ever move on to eating solid foods at this point in time. Before we started the therapy, I was hoping that by the end of the 10-weeks, Brennen would be eating solid foods that he could chew, but realistically I don't think that is going to happen. Luckily, at the end of the 10-weeks, we still continue with the feeding therapy and just resume our office visit once a week.

One of the patients in the feeding program went home today with flu-symptoms. I have been washing my hands alot and Brennen's too. I hope we don't get it! We kept the kids in the house this weekend. We're being extra careful to avoid unnecessary exposure.

The hospital cafeteria has even adjusted how many groups can eat at the same time. They have it scheduled when people can come to the cafeteria. Hospital employees and visitors can't eat in the cafeteria until 12:20. The Autism School, which is attached to the feeding hospital, eats first and then the cafeteria staff cleans all the tables for the next group to come in. It's going to be a crazy season! Hopefully all of these precautions will help us stay healthy.

On the home front, Sophia loved her breakfast her Daddy gave her today. She ate cheerios and a chocolate chip cookie on the way to Aunt Kristin's today! I think she is loving her Daddy-Daughter time!

Well, that's all for now. I will keep you posted as to how he does tomorrow.

Friday, October 9, 2009

Friday, Oct. 9, 2009

TGIF!! It's been a long week and I am so ready to come home. We are going to go shopping tonight. I get to feel like a real person and go out shopping! The kids could use some winter coats, now that it is starting to feel like winter temperatures in the morning. Especially here in Cleveland. Brrr!

The past 2 days, the head nurse has asked me if Brennen has been exposed to anyone with the flu or has exhibited flu-like symptoms. They are very strict when it comes to this. There is a new policy that if Brennen or any other child in the program, shows symptoms of the flu then that child won't be allowed to participate in the program. This means that if Brennen gets sick, our 10-week timeline gets pushed back. We can't afford to do that!!

Please be in prayer for Brennen and myself that we would remain healthy so there is no disruption in our therapy. As much as I want to see everyone on the weekends when we come home, we may have to limit interactions. No matter how careful we try to be in limiting exposure to groups of people, we may still get sick, but I am afraid to risk it!

I am worried about bringing Brennen to church too. I hate to miss church for our entire therapy, but I don't know what to do. I know I can't keep him in a bubble but I just really don't want him to get sick.

"Why must there always be a problem?!" (quoting George from Seinfeld)

Well, have a good HEALTHY weekend everybody! We will try and do the same!

Thursday, October 8, 2009

Thursday, Oct. 8, 2009

I have been reading the book "The Little Engine That Could" to Brennen. He picked that book out of the children's library in his preschool room. As I was reading it, I couldn't help but make the comparisons of Brennen to the Little Engine. Brennen is so small, like the engine in the book, and he has to climb this steep track of new environments, new textures, new tastes, and new faces.

As I'm sure you remember, at the end of the book, the Little Engine makes it up the steep track. I know Brennen will too. It will just take a lot of patience and time.

We had a rough start to the day today. There was a new chair in the feeding room and Brennen didn't like it (Strike 1). Then Miss Darcia, who is only in the Day Hospital once a week, was feeding Brennen (Strike 2). He couldn't get the chair and the new face out of his head and move past it to begin eating (Strike 3).

So after 25 minutes of not getting anywhere, we called that feeding session a wash and Brennen went back to the Day Hospital room to play until his next feeding time.

He did much better at the next feed. The new chair had disappeared from the room and he was able to sit in the chair that he was familiar with. Miss Darcia fed him at this feed too, so he can get used to her as well. Brennen ate all of his food, including 10 bites of chicken!

This week seems very long to me. I think it's because it is our first full week. Last week, we started on Wednesday. But, like the Little Engine, we will press onward.

I think I can, I think I can, I think I can....

Wednesday, October 7, 2009

Honeymoon is Over...

I guess you could say Brennen is starting to have the "7-Day Itch" when it comes to his therapy program...

The therapists warned me that this would happen. Kids start off really well and then sort-of figure out that the routine isn't going anywhere and become sick of it. That's kind of where we are right now.

Brennen is still eating okay for the therapists but is beginning to show more of his true colors during meal time. No menu items have changed but he is just tired and beginning to melt down over little things. The pediatrician on staff wanted to look in his ears and Brennen ended up face down on the floor because he didn't want to be messed with.

We recovered from that little tragedy and went to Occupational Therapy today. The therapist noted that Brennen could use some therapy with gross motor movement in terms of muscle control as well as some fine motor therapies. The OT will be an important part of the team in terms of getting Brennen's mouth "ready" for eating. There are some strategies that they can do to help Brennen prepare for the feel of foods in his mouth.

As for me, I am beginning to feel the "itch" too. It is long days of therapy and then waiting for the next therapy and then waiting for the next therapy...etc., etc.

On the plus side, I am quite the queen of word searches. I have yet to find one that I can't handle. In case you were wondering about the "Code Violet" page yesterday, it was a patient who was angry at his therapist because he didn't want to do his therapy. I am guessing he was feeling very "itchy" himself.

On a different note, at the Ronald Mcdonald House last night, there is an Arabic family that is staying there because their son is receiving some sort of treatment. The women of the family wear robes that cover everything but their eyes. One of the women blew Brennen a kiss and told me, "He is beautiful!". Brennen blew her kisses back. It was really sweet. I think that helped him warm up to them a little bit, because when he first saw them, he said, "Mommy, they are kind of scary!".

If nothing else, this experience is teaching him at a very young age, that not everyone dresses or looks like you. He is learning to accept others' differences as who they are.

Everyone I have met while staying there has been really nice. I don't get a whole lot of time to socialize because we basically are in the day hospital all day, and then go to the RM House for supper and sleeping, and that's about it. It helps make the days go fast though.

Tonight is Wednesday and you know what that means?! Tim and Sophia come to visit! ....Ding, ding, ding! My brother, Jeff and his wife, Kristin are coming up too. It is a nice break in the week to see them. I am excited to see my baby girl. I hope she comes to me..she has been kind of funny about doing that up here. She will go to me when I'm at home on the weekends but I think the change of environment throws her. Anyway, we will be excited to see them.

I will post more tomorrow. Have a good evening!

Wednesday, Oct. 7, 2009

Well, yesterday we found out why you don't wake Brennen up from his nap for his 2:30 feed...whew! Brennen had been missing his 2:30 for several days now because he would always be sleeping from his nap. He would take a nice long nap at the day hospital, which I know he needs, but then have trouble falling asleep back at the RM House. So they asked me yesterday if wanted to let him sleep or wake him up...I said I would wake him up. BIG MISTAKE!!

He was crying, saying he was still tired, and had no interest in eating because he was mad. It was horrible...

When the feeding team heard him crying, Dr. Cuddy ran in to see what was going on because everything up to this point had gone rather smoothly. Nurse Barbara was wonderful with him..very patient and just waited out the crying and began talking very soft with him. She began asking him about his day and what he liked about preschool. Anything to distract him was the goal of their conversation.

Well, about 15-20 minutes later...Brennen started eating. Dr. Cuddy explained that we were going to rearrange the schedule so that he can nap during the afternoon and not have to worry about this feeding time. We added an additional one in the morning. Since Brennen's volume of food is not very much at this time, it won't be a problem to move them a little closer together. With his new schedule, starting today, he will have his second feeding right after preschool. Which will be nice because he might be hungry after he plays.

She explained that if we had taken him out of the feeding chair, it could have had negative effects on the rest of the feedings. (I cry..I get out of eating) As much as I wanted to get him out of the chair, I knew she was right. It is all about having control over situations and consistancy with scheduling.

Lesson learned...Don't wake a sleeping Brennen :)

I will try and post more today to let you know how the new schedule goes....

Tuesday, October 6, 2009

Tuesday, Oct. 6, 2009

Miss Betsy, Brennen's preschool teacher, is so great! She brought Brennen back to the day hospital room in a wagon. He really likes that part of his day. Today in Miss Betsy's room it was "Orange Day" so they got to work with orange playdough and do other activities involving the color orange. It is a nice break in the day for him. (and me too :))

I am typing in the computer resource room, and they just paged a "Code Violet" which means a violent person in the therapy hallway. I am not sure what all that means but I'm not going to move for awhile! I can hear the different theraptists' voices in the hallway and they sound as though they are laughing. I can see other therapies continuing to take place, so I assume all is well! I believe it was just one of the patients receiving therapy here at the hospital. Nevertheless, I am beginning to miss the dull excitement of Wayne County.

Brennen is taking his nap and at 2:00 he will receive Recreational Therapy, which will give him a change of scenery and allow him to have some gross motor therapy. I know he will enjoy this therapy too. However, I am sure he will still be sleeping when they come to get him. Maybe we can work on a later time if it is available in their schedule.

When I began typing this post, I didn't realize it would be about so many colors. I think I like orange the best....





Monday, October 5, 2009

Monday, Oct. 5, 2009

Leaving home on Sunday and driving up here was tough. Brennen and I left Sunday afternoon when Sophia was taking a nap. I thought it might be eaiser for both of us...(especially me!)

Brennen did not have any aversions to coming back up, in fact he was excited to use the elevators and play in the toy room at the RM House. I am glad he is so social because it definitely has made this transition much easier.

Brennen started his "preschool" today from the Education Coordinator. He will receive 1 hour of preschool every day from 10:00-11:00. His teacher's name is Ms. Betsy. She is wonderful...like a lot of other teachers I know (wink, wink). Ms. Betsy was very impressed with Brennen and how he knew his colors, shapes, letters and numbers. Ahh..yes, if only my little genius would eat!

Today in feeding therapy Brennen's meals have not changed a whole lot. Breakfast is still rice cereal with pureed peaches and a banana. Brennen did not take any bites of the banana, but licked it. At this point they are not pushing the whole foods at the meal. It is simply offered. When the banana was cut up into bite size pieces last week, he did take 2 bites.

The remaining snacks/meals of the day are 3 oz of pureed peaches, 2 oz of sweet potatoes, and 5 bites of pureed chicken. Usually a whole food of potato chips, grapes, or strawberries is included as well. Each snack/meal consists of 5 oz of pureed food and 4 oz of whole milk.

The dietician informed me that we will be introducing a new food this week. Not sure what that will be or when . They also informed me that the kitchen received a shipment of Brennen's gluten free pretzels! Those are going to be worth every expensive penny that they are because they will be used as reinforcers and/or texture breaks when introducing new foods. For example, Brennen would eat 5 bites of a new food and then get a pretzel break. Just FYI a small bag costs $9.00. They are the only pretzels he is able to eat due to his dietary restrictions. These pretzles contain no gluten (wheat) in them. Luckily, Buehler's does carry these because we requested it!

When Brennen was going through the outpatient feeding therapy program through the Clinic, I would use that system for Brennen when he was eating sweet potatoes at home. (5 bites then crunchy texture break). He is eating sweet potatoes much better now, so he doesn't need those breaks any more for that particular taste.

The program is working, it just feels really slow to me. I know we can't push Brennen to much because the last thing you want to do is to send a child backwards when they are in this intense therapy. I just wish I could fast forward and see what he is eating at the end of the treatment. I know they had mentioned that the Feeding Team's goal for Brennen at the end of the 10-weeks is for him to sit calmly and eat a balanced pureed meal consisting of meat, vegetable and fruit.

I am hoping we can go a little further than that...but I don't want to set my expectations too high and feel like at the end we haven't accomplished anything. I am reminding myself to go with the flow and allow the therapists to do their thing. This is what they do for a living; helping kids eat, who currently are not eating for whatever reason.

Well, I better get back downstairs. Brennen was taking a nap so I will go check on him. I will post more tomorrow!

Friday, October 2, 2009

Friday, Oct. 2, 2009

We made it to Friday! I spoke with a manager at Ronald Mcdonald House and he stated that it would be fine for Brennen and I to return home on the weekend as long as we return within 48 hours. So, in other words, we will return Sunday afternoon and still be able to keep our same room. What a relief!

Brennen is starting to feel the stress of the week today. He is having some meltdowns over little things not even related to feedings. But overall, he continues to do really well. In the three feedings we have had so far, he has eaten his rice cereal, pureed peaches, pureed sweet potatoes, cut strawberries and cut bananas. He has eaten those items very calmly. He has eaten his 5 bites of pureed chicken with much prompting, but none the less has eaten them.

I am looking forward to coming home and being with Sophia and Tim. I think this weekend break will be nice and then we can come up Sunday hopefully refreshed.

I met the Educational Specialist that Brennen will be working with starting Monday. She is really nice and I know Brennen is going to love working with her. She will be seeing him everyday at a time in-between his feedings.

Next week's schedule should go a little smoother because he will begin seeing the other specialists who will work on other disciplines in addition to feedings. (O.T., Recreational Therapy, Education Specialist)

Have a good weekend everybody! Will post more on Monday! :)

Thursday, October 1, 2009

Thursday, Oct. 1, 2009

Brennen is currently resting right now in-between feedings. His next feeding is at 2:30 then our last feeding is at 4:30. After our 2:30 feeding, he will get to play in the Recreational Therapy room which has basketballs/hoops and other toys that allow for gross motor movement.

He is doing very well with his new routine. We both slept really well last night. I think we were both exhausted.

Because Brennen was eating his 5oz of food at each feeding so smoothly, the feeding team decided to go ahead and bring out the pureed chicken. He was not so crazy about that idea. He began flapping his arms and turning his head in avoidance because the idea of eating chicken is very stressful to him.

The therapists and nurses are wonderful with Brennen. He did eventually eat his 5 bites of pureed chicken. It was not a forced feeding. Brennen did eat his 5 small bites after a lot of prompting. I am just glad that Brennen is consistent. What the therapists and nurses see during feedings is what I see at home. He is the same Brennen no matter who is feeding him. Which is why Brennen does not have a behavioral eating problem; his is more sensory with tastes/textures and you can't turn that off and on depending on who is feeding you.

It is stressful being away from home, but I'm so glad we are here...

p.s. Tim, Sophia, and Grandpa and Grandma Moomaw are coming up to visit tonight. Brennen and I will be excited to see them. :)

Wednesday, September 30, 2009

Wednesday, September 30, 2009

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.

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!

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...

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.

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...

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! :)

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.

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)

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?!)