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.
Wednesday, November 25, 2009
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...
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!
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!
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!
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!".
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
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
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
Subscribe to:
Posts (Atom)
Posts
