We are so excited to test some of these out with Sweet Pea tomorrow! Thank you again Patti!!!
Monday, March 15, 2010
Sensory Bag!
Thank you Patti at To Love Endlessly for the great sensory bag! You can read all about it here.
We are so excited to test some of these out with Sweet Pea tomorrow! Thank you again Patti!!!
We are so excited to test some of these out with Sweet Pea tomorrow! Thank you again Patti!!!
March 21 - World Down Syndrome Day - Post 2
Here are more of DSALA's 21 quotes for 21 days...
I have to be honest here...reading some of these made my heart sing while reading others made it sink. It's still hard for me to think that Sweet Pea won't have a "typical" life. I just hope with all my heart and soul that her life is one that SHE truly enjoys. Things are definitely going to be harder for her and her Daddy and I would do anything for that not to be the case. However, that is life and we are continuing to learn to deal with it.
Day 5
"Michael do it too! Yes I can!"
Michael Chambers
Age: 5 years
Day 6
Steve was addressing a class for Special Ed Teachers at Azusa Pacific University. As a guest speaker, and his opening line was...
"Hi, my name is Steve Vaughn and people say that I am Mentally Retarded, but I am Down syndrome!"
Steven Vaughn
Age 47 at time of quote
Day 7
When Sara voted in her first election she was asked how she voted. She answered...
"American"
Sara Layman
Age: 20 years
Day 8
At the end of an excruciatingly non-productive session with her speech pathologist, and mom at wit's end because she simply didn't feel like cooperating today, she finally blurts out...
"So... what's the problem?"
Angelica Trujillo
Age: 5 years
Day 9
When asked if he had enjoyed the whole grain pasta at dinner...
"It was like a party in my mouth!"
Kevin Ewing
Age: 28 years
Day 10
"We... ought to love... one another"
Eric Carter
Age: 6 1/2 years
Saying and signing his Bible Verse at Awana Club at Church. He remembers his verses longer than may of his typical peers.
Day 11
"When I look into the mirror I see a wonderful, beautiful face looking back at me and I know I can tackle everything!"
Lauren Potter
Age 19 years
Lauren plays Becky Jackson on the Fox show "Glee." She is scheduled to appear on two up coming episodes: "The Power of Madonna" currently scheduled for 4/20/10 and "Home" not yet scheduled.
Day 12
James wanted the dollar amount for filling his lawnmower gas cans divided in two. When asked "What do you mean?" he answered...
"You know, mathematics!"
James E. Coleman
Age: 51 years, going on 52
Day 13
During a private art lesson when her teacher tried to help, Yasmine admonished her with her finger and said...
"I am the artist and you are the teacher!"
Yasmine Harrison
Age: 9 years
Day 14
“Down Syndrome means that you learn slow and it is very hard to keep up I know I have been there as I was growing up. I had a lot of help with my family and their support. I had tutors to help me to achieve my goals. So can you because I believe in you. YOU CAN DO IT with extra support or your family and friends. They can help you make your dreams come true and never give up. Go For Your Dream and achieve."
Andrea Friedman
Age 39 and proudly going on 40
Day 15
"I do job training at the Marriott Hotel at Warner Center. I do cleaning windows, gym and in the kitchen. I like the food at the Marriott. They have good lunch! Soon I will finish High School. I would like to be a zoo keeper."
Adinan Shrek
Age: 20 years
I have to be honest here...reading some of these made my heart sing while reading others made it sink. It's still hard for me to think that Sweet Pea won't have a "typical" life. I just hope with all my heart and soul that her life is one that SHE truly enjoys. Things are definitely going to be harder for her and her Daddy and I would do anything for that not to be the case. However, that is life and we are continuing to learn to deal with it.
Day 5
"Michael do it too! Yes I can!"
Michael Chambers
Age: 5 years
Day 6
Steve was addressing a class for Special Ed Teachers at Azusa Pacific University. As a guest speaker, and his opening line was...
"Hi, my name is Steve Vaughn and people say that I am Mentally Retarded, but I am Down syndrome!"
Steven Vaughn
Age 47 at time of quote
Day 7
When Sara voted in her first election she was asked how she voted. She answered...
"American"
Sara Layman
Age: 20 years
Day 8
At the end of an excruciatingly non-productive session with her speech pathologist, and mom at wit's end because she simply didn't feel like cooperating today, she finally blurts out...
"So... what's the problem?"
Angelica Trujillo
Age: 5 years
Day 9
When asked if he had enjoyed the whole grain pasta at dinner...
"It was like a party in my mouth!"
Kevin Ewing
Age: 28 years
Day 10
"We... ought to love... one another"
Eric Carter
Age: 6 1/2 years
Saying and signing his Bible Verse at Awana Club at Church. He remembers his verses longer than may of his typical peers.
Day 11
"When I look into the mirror I see a wonderful, beautiful face looking back at me and I know I can tackle everything!"
Lauren Potter
Age 19 years
Lauren plays Becky Jackson on the Fox show "Glee." She is scheduled to appear on two up coming episodes: "The Power of Madonna" currently scheduled for 4/20/10 and "Home" not yet scheduled.
Day 12
James wanted the dollar amount for filling his lawnmower gas cans divided in two. When asked "What do you mean?" he answered...
"You know, mathematics!"
James E. Coleman
Age: 51 years, going on 52
Day 13
During a private art lesson when her teacher tried to help, Yasmine admonished her with her finger and said...
"I am the artist and you are the teacher!"
Yasmine Harrison
Age: 9 years
Day 14
“Down Syndrome means that you learn slow and it is very hard to keep up I know I have been there as I was growing up. I had a lot of help with my family and their support. I had tutors to help me to achieve my goals. So can you because I believe in you. YOU CAN DO IT with extra support or your family and friends. They can help you make your dreams come true and never give up. Go For Your Dream and achieve."
Andrea Friedman
Age 39 and proudly going on 40
Day 15
"I do job training at the Marriott Hotel at Warner Center. I do cleaning windows, gym and in the kitchen. I like the food at the Marriott. They have good lunch! Soon I will finish High School. I would like to be a zoo keeper."
Adinan Shrek
Age: 20 years
Wednesday, March 10, 2010
Very Successful Day
Today went great! Thank you everyone for the positive thoughts because they worked!!!! Sweet Pea got the ear tubes put in and had the EGD performed! The anesthesiologist was wonderful! He met with us and he listened to her lungs and confirmed that they were clear and so even though she has this wet cough, he said he would still give it a try. The plan was to try the mask and see how she started reacting. If it wasn't going smoothly or she started coughing to pull the plug. If things were going smoothly then he would proceed with putting a breathing tube in which was needed for the EGD. The priority was to get the ear tubes in and if the EGD was able to happen great, but if not, we were fine with that too. We were thrilled that he was on the same page! Some anesthesiologists wouldn't have even attempted it and with her being sick so regularly he understood our desire to want to try. Yippee!!!
The ENT was only able to put the smallest ear tubes in so it is likely that we will have to repeat the procedure in about 4 months, but it could be more or less. We will have to wait and see. He said there was a lot of fluid in both ears that he suctioned out. He thinks she should be able to hear a lot better now so we can hope that her speak can start picking up! That is our hope!
The GI gave us pictures from the EGD and although the esophagus and stomach are a bit irritated, it isn't bad by any stretch. That makes us all feel better. He wants us to continue with the Prevacid which is no surprise at all. Oh, and the best news of all...regarding the artery that is pushing in on the esophagus...it doesn't look like it will cause an issue with solid foods! It doesn't push in very much and he doesn't see it throbbing which he said was a good thing. I can't believe that I almost forgot to share that piece of great news!
Here are some pictures from the day. She was such a good patient! She had a much easier time coming out from under the anesthesia this time. Probably because she was only under for about an hour as compared to three hours last time. She had blood drawn before the procedure and she was really good for that. The labs showed her white blood count was a little low so they gave her some antibiotics while she was under, but I don't really know what having a low white blood count means. I will be asking her pediatrician about that at the one year checkup.
Check-in:
Waiting for blood draw:
Mommy playtime:
Post Procedure snuggle time (do I look happy or what!?!?!):
I love the looks that Sweet Pea gives sometimes. She is certainly a character and she had all the nurses and doctors wrapped around her little finger very quickly. We are so proud of how great she did during the whole thing and are just thrilled that we were able to get them both done today!
The ENT was only able to put the smallest ear tubes in so it is likely that we will have to repeat the procedure in about 4 months, but it could be more or less. We will have to wait and see. He said there was a lot of fluid in both ears that he suctioned out. He thinks she should be able to hear a lot better now so we can hope that her speak can start picking up! That is our hope!
The GI gave us pictures from the EGD and although the esophagus and stomach are a bit irritated, it isn't bad by any stretch. That makes us all feel better. He wants us to continue with the Prevacid which is no surprise at all. Oh, and the best news of all...regarding the artery that is pushing in on the esophagus...it doesn't look like it will cause an issue with solid foods! It doesn't push in very much and he doesn't see it throbbing which he said was a good thing. I can't believe that I almost forgot to share that piece of great news!
Here are some pictures from the day. She was such a good patient! She had a much easier time coming out from under the anesthesia this time. Probably because she was only under for about an hour as compared to three hours last time. She had blood drawn before the procedure and she was really good for that. The labs showed her white blood count was a little low so they gave her some antibiotics while she was under, but I don't really know what having a low white blood count means. I will be asking her pediatrician about that at the one year checkup.
Check-in:
Daddy enjoying some playtime with Sweet Pea:
Waiting for blood draw:
Post Procedure snuggle time (do I look happy or what!?!?!):
I love the looks that Sweet Pea gives sometimes. She is certainly a character and she had all the nurses and doctors wrapped around her little finger very quickly. We are so proud of how great she did during the whole thing and are just thrilled that we were able to get them both done today!
Tuesday, March 9, 2010
We're going for tubes tomorrow
The ENT thinks we can probably get tubes tomorrow and they will just use gas sedation, but it is very unlikely that we will get the EGD. We may get nothing, but hopefully we will get tubes. We have to be at the hospital now by 5:30am!!!! That is insane, but we will do it. Keep your fingers crossed!
Sunday, March 7, 2010
Videos and then some
Not much to update you on this past week.
Therapies went ok, but not great. She really loves her infant stimulation session and Ms. Kelly let us borrow her Rody for the week. Sweet Pea played on one months ago and loved it and she still loves it. It's hard to get a picture of her on it since I have to help her stay upright, but you should get the idea from these shots. It's an inflatable horse that is great for working on balance...and for playing. We want to take a little air out of this one and get it so that it is the right height for her to sit with her feet flat on the floor. Haven't done it yet so probably won't, but that is what we were thinking of doing at least.
PT was the typical fight, but at least it started off ok. Here she is sitting on a stool that her PT brought:
That picture reminds me of something else...no we don't have her in metallic blue biker shorts (a la 1990). Those are called Hip Helpers and they help her to keep her legs together because the legs are sewn together to the knees. They make it so that she can't do the splits to get from sitting to laying. She has started doing that more so we are trying to break her of the habit. The other benefit of these is that it forces her to keep her legs straighter when she is sitting so it works the core more. To see what I mean, sit on the floor with your legs bent and knees sticking outward...pretty easy right? Now sit with your legs straight out in front of you...harder. We didn't leave them on during much of the therapy session, but we do need to try to remember to put them on her at other times. It's been so cold this week that we haven't been very good about it since you can't wear pants over them.
Sweet Pea is still a bit sick so we are switching meds tonight in hopes that we can kick this cough in time for ear tubes on Wednesday. I'm really not holding my breath, but any positive thoughts you could send would be great!
Here are a few videos that you might enjoy...
If you didn't know, Sweet Pea has become a bit of a drama queen and every once in a while she will put her hand up to her forehead and get this forlorn look on her face. I was mimicking her and she got the biggest kick out of it...
This is her just laughing again at Mommy trying to be a circus monkey and keep Sweet Pea entertained...
Daddy was making Mommy laugh here and Sweet Pea was being a good sport about it all. Try to excuse the background noise. We thought of muting it, but it's just not the same without the blah blah blahs.
Maybe it's wishful thinking, but I think that Sweet Pea has really gotten the sign "more". It's not perfect...but it is definitely there. Do you agree?
I'll keep everyone posted on the surgery or the postponement if that is what ends up happening. I'm really hoping not, but we shall see.
Therapies went ok, but not great. She really loves her infant stimulation session and Ms. Kelly let us borrow her Rody for the week. Sweet Pea played on one months ago and loved it and she still loves it. It's hard to get a picture of her on it since I have to help her stay upright, but you should get the idea from these shots. It's an inflatable horse that is great for working on balance...and for playing. We want to take a little air out of this one and get it so that it is the right height for her to sit with her feet flat on the floor. Haven't done it yet so probably won't, but that is what we were thinking of doing at least.
PT was the typical fight, but at least it started off ok. Here she is sitting on a stool that her PT brought:
That picture reminds me of something else...no we don't have her in metallic blue biker shorts (a la 1990). Those are called Hip Helpers and they help her to keep her legs together because the legs are sewn together to the knees. They make it so that she can't do the splits to get from sitting to laying. She has started doing that more so we are trying to break her of the habit. The other benefit of these is that it forces her to keep her legs straighter when she is sitting so it works the core more. To see what I mean, sit on the floor with your legs bent and knees sticking outward...pretty easy right? Now sit with your legs straight out in front of you...harder. We didn't leave them on during much of the therapy session, but we do need to try to remember to put them on her at other times. It's been so cold this week that we haven't been very good about it since you can't wear pants over them.
Sweet Pea is still a bit sick so we are switching meds tonight in hopes that we can kick this cough in time for ear tubes on Wednesday. I'm really not holding my breath, but any positive thoughts you could send would be great!
Here are a few videos that you might enjoy...
If you didn't know, Sweet Pea has become a bit of a drama queen and every once in a while she will put her hand up to her forehead and get this forlorn look on her face. I was mimicking her and she got the biggest kick out of it...
This is her just laughing again at Mommy trying to be a circus monkey and keep Sweet Pea entertained...
Daddy was making Mommy laugh here and Sweet Pea was being a good sport about it all. Try to excuse the background noise. We thought of muting it, but it's just not the same without the blah blah blahs.
Maybe it's wishful thinking, but I think that Sweet Pea has really gotten the sign "more". It's not perfect...but it is definitely there. Do you agree?
I'll keep everyone posted on the surgery or the postponement if that is what ends up happening. I'm really hoping not, but we shall see.
Thursday, March 4, 2010
March 21 - World Down Syndrome Day - Post 1
In honor of World Down Syndrome Day our local Down Syndrome Association (DSALA) is publishing "21 quotes in 21 days by 21 people with Trisomy 21 on what it's like to have Down syndrome." I'm not going to post them daily, but I'll group them and try to post them weekly.
Quote 1:
Quote 1:
"She has Down syndrome just like me.
You sure are lucky!"
By: Christine Young (age 37)
Said to a family that included a toddler with Down syndrome at Disneyland,
the Happiest Place on Earth.
Quote 2:
"Dad, what are taxes?
Why are they taking money from my paycheck?" Nick Heukrodt (age 26)
Clerks' Helper at Gelson's Market, Calabasas, CA
Who pays all taxes and union dues.
Quote 3:
"Mom, remember be patient.
I will do it, I learn, be patient."
Jarold Martinez-Ghazarian
Age: 8 years
Quote 4:
"Can I say one more thing really fast?
I am here to prove people with disabilities
can have a normal life and live it
and that's what I am here to prove"
Brent K. Banford
Age: 27years
Age: 27years
Brent spontaneoulsly made this remark to the judges
after his audition for the TV reality show
SO YOU THINK YOU CAN DANCE.
It was aired on May 28, 2008.
By the way, Brent is a pretty good dancer too!
I hope you enjoy them! I get a kick out of them.
Monday, March 1, 2010
Happy 11 Month Birthday!
Happy 11 month birthday Sweet Pea! She didn't really have a birthday this month because there wasn't a 29th day, but we still can celebrate it.
Here is what she is doing at 11 months old:
Weight: 17lbs 1oz with clothes on...yes, that is less than at 10 months
Foods: Took out all citric acid and even apples the past 2 weeks to try to help the reflux and it seems to be working, but it could be the decrease in quantity too...time will tell. Eats lots of carrots, sweet potatoes, peas, green beans, chicken, turkey, pears, pear juice, some bananas, teething biscuits
Favorite food: sweet potatoes with turkey
Favorite toy: still the musical star
Favorite song: Wheels on the Bus
Accomplishments: clapping, waving hi/bye, banging objects together, rocking on all 4's while I say Rock A Baby, drinking from a straw, dumping containers of toys out, taking objects out of containers, kneeling when on our lap with arms pushing up on chest, scooting backwards (even though she wants to go forwards)
Works in Progess: eating puffs (little finger foods for babies that easily dissolve so that they don't choke if swallowed whole), signing "more"and combat crawling
Sounds: da mainly but a few la and ba's...all with tongue outside the mouth
facial expressions: fish lips, lip smacks (not often)
Sleep: we wake her up or she wakes herself up for a twilight feed between 9:30pm - 11pm and then normally sleeps in until at least 6am and sometimes closer to 7am!
Sweet Pea is still recovering from her latest sickness. She got new meds today from the doctor and we hope that her appetite comes back soon. So far she has actually eaten more today than in the past few days so we are hopeful that she is turning a corner. She slept fairly well last night with only waking up 3 times. Even through all the not feeling good she has still been a love and joy to be around most of the time.
Here is video of her moving ever so slightly forward...using her toes mainly. You will see that Kodi is a bit too "helpful" and will come to Sweet Pea instead of making Sweet Pea come to him. He loves his little girl! It will be interesting to see how their relationship changes as she starts chasing him around the house. I think he will love the attention knowing him!
Mommy and Daddy love you Sweet Pea! We hope you feel better really soon!!!
Here is what she is doing at 11 months old:
Weight: 17lbs 1oz with clothes on...yes, that is less than at 10 months
Foods: Took out all citric acid and even apples the past 2 weeks to try to help the reflux and it seems to be working, but it could be the decrease in quantity too...time will tell. Eats lots of carrots, sweet potatoes, peas, green beans, chicken, turkey, pears, pear juice, some bananas, teething biscuits
Favorite food: sweet potatoes with turkey
Favorite toy: still the musical star
Favorite song: Wheels on the Bus
Accomplishments: clapping, waving hi/bye, banging objects together, rocking on all 4's while I say Rock A Baby, drinking from a straw, dumping containers of toys out, taking objects out of containers, kneeling when on our lap with arms pushing up on chest, scooting backwards (even though she wants to go forwards)
Works in Progess: eating puffs (little finger foods for babies that easily dissolve so that they don't choke if swallowed whole), signing "more"and combat crawling
Sounds: da mainly but a few la and ba's...all with tongue outside the mouth
facial expressions: fish lips, lip smacks (not often)
Sleep: we wake her up or she wakes herself up for a twilight feed between 9:30pm - 11pm and then normally sleeps in until at least 6am and sometimes closer to 7am!
Sweet Pea is still recovering from her latest sickness. She got new meds today from the doctor and we hope that her appetite comes back soon. So far she has actually eaten more today than in the past few days so we are hopeful that she is turning a corner. She slept fairly well last night with only waking up 3 times. Even through all the not feeling good she has still been a love and joy to be around most of the time.
Here is video of her moving ever so slightly forward...using her toes mainly. You will see that Kodi is a bit too "helpful" and will come to Sweet Pea instead of making Sweet Pea come to him. He loves his little girl! It will be interesting to see how their relationship changes as she starts chasing him around the house. I think he will love the attention knowing him!
Mommy and Daddy love you Sweet Pea! We hope you feel better really soon!!!
Subscribe to:
Posts (Atom)