Well it has been about 1 year that we have been in the feeding program now. Brennen has come such a long way in one years time. When we entered the feeding program, he was eating baby rice cereal, gluten free pretzels and strawberries. For me to imagine him EVER eating pizza or a hamburger at that point would have been a dream.
I am happy to say that we are at that point! Over the holiday weekend, we ate at Wendy's and we ordered Brennen a kids' meal! We all sat at the table and ate our food! We ordered Brennen a hamburger with no bun, oranges, and a white milk. He sat calmly at the table and ate his entire meal. I looked at Tim and I know we were thinking the same thing..this is what "normal" is!
The 10 weeks we spent at the Hospital this past fall were soooo worth any hassles that came with it. I truly believe Brennen would not be eating this well if we had decided to not admit him to the day hospital for those 10 weeks.
His diet has become so much more varied and stable that I was able to begin potty training this summer. He is doing great! Brennen is even going to the bathroom at places other than at home. We still have a little trouble with stooling, but Brennen always did have trouble with that.
Overall, things are going very well. Brennen begins Pre-School in the fall and we are both looking forward to that.
We had an appointment at the hospital yesterday and Dr. Cuddy was pleased with how his diet looked. We still have appointments every 2 weeks for a little while yet, and then we will switch to having one appointment a month. At this point, I am still feeding Brennen and we need to move to him feeding himself. He is beginning to show initiative in feeding himself, but we still have a ways to go.
Miss Sophia is doing well too! She turned 2 in March and she loves swimming in Grandma and Grandpa's pool.
We have a trip planned at the end of this month to the Columbus Zoo and we are excited that we do not need to pack any pureed foods or diapers for Brennen.
This really is turning out to be a wonderful summer! ;)
Wednesday, July 7, 2010
Saturday, March 27, 2010
March 27, 2010
Okay..so I have not been able to update Brennen's progress as much as I would have liked. Life has been incredibly busy and I will have to say that it has taken me longer than what I thought it would to get back into the normal swing of things. It has been difficult juggling work, home, and taking Brennen to feeding therapy, occupational therapy, and swimming lessons. Somewhere in the midst of everything my house needs cleaned too...
But we are surviving and Brennen has made wonderful progress. Brennen's food is still pureed with the exception of incredibly small bites of hot dog! I was so amazed to see his little mouth chewing a hot dog bite! I kept thinking that this summer may be the first time that our whole family will be able to eat the same meal.
This summer we plan on increasing his therapy visits to once a week again to gain some momentum with textures. We are currently going to therapy every other week.
I am very ready for this school year to be over and be able to have a slower pace this summer. Taking Brennen to therapy for the 10 weeks was so very necessary and I am not sorry that we did it. In fact, I would do it again in a heart beat if I had to do it over again.
It has not been easy, but having a child with severe oral sensitivities isn't easy either. Taking Brennen to swimming has been good for him in trying to help him with some of his sensitivities as well. He is starting to become a little more confident in the water and not quite as "clingy" to his instructors.
Well, that's kind of a brief overview of the past 3 months...I will update again as we begin to gain some momentum with eating this summer.
Thanks for checking on Brennen's progress and May God Bless!
But we are surviving and Brennen has made wonderful progress. Brennen's food is still pureed with the exception of incredibly small bites of hot dog! I was so amazed to see his little mouth chewing a hot dog bite! I kept thinking that this summer may be the first time that our whole family will be able to eat the same meal.
This summer we plan on increasing his therapy visits to once a week again to gain some momentum with textures. We are currently going to therapy every other week.
I am very ready for this school year to be over and be able to have a slower pace this summer. Taking Brennen to therapy for the 10 weeks was so very necessary and I am not sorry that we did it. In fact, I would do it again in a heart beat if I had to do it over again.
It has not been easy, but having a child with severe oral sensitivities isn't easy either. Taking Brennen to swimming has been good for him in trying to help him with some of his sensitivities as well. He is starting to become a little more confident in the water and not quite as "clingy" to his instructors.
Well, that's kind of a brief overview of the past 3 months...I will update again as we begin to gain some momentum with eating this summer.
Thanks for checking on Brennen's progress and May God Bless!
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!!
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...
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!
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.
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!
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!
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!!
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!
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!!
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...
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.
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!
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?!
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!!
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.
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
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...
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...
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