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, 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, 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.

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, 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, 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, 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...

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, 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, 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, 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, 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!

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, 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, 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, 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, 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, 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....

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, 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, 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, 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, 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. :)