***Disney Design Addict's Chit Chat,Designs and Pixie Dust! Everybody WELCOME!*** Part 2

[my3princes]

Wow I think I have a tear rolling down my cheek. *Questioning Sexuality Again* OK back, you ladies sure do know how to make a father proud.

We know she's beutifull, but it's really cool hearing other people say it.

I do think I'm creating a KAA shirt though that says, "What are you thssstaring at?" This way it can be taken any way the viewer wants.

The "thssstaring" is suppose to be like a hiss, so any help on how that would be spelled would be appreciated.

I look forward to posting our Fastpass pictures, but think I might be spending a small fortune.

I have to agree with everyone else. I had to look to see the crutches. She is beautiful and that is definately what stands out in the photos, not her disablity. Maybe some people are just mesmerized by her beauty and don't stare at the crutches. Maybe you could make her a shirt with something about staring at her beauty rather than her disability.

Deb

 

[Tammi67]

Another agree-er here as well as to the beauty of the children. I'm sorry you have to endure the insensitivities of others. It must be very frustrating.

Please excuse my ignorance of CP, and if I may, I would like to ask a question. Both of you said the CP was caused because of premature delivery. How does that effect the body? It is because the nervous system is not fully developed? Denise, your children's does not appear to be as severe. Is this something that will then dissipate as they age, and does any therapy help? I'm sorry to put a damper on this thread, but it is really sad when you learn of children that suffer like this. I would just like learn a little of what you all endure.

 

[pezheadval]

Fantastic design! I love it What font did you use?

Thanks!

The font I used is Nauvoo.

 

[Atotty]

Help!!!!! I did our shirts today. Followed the directions. And now middle dd's shirt is peeling at the corner. I used Avery Tshirt paper. Any ideas on ways to fix it?

Thanks!

 

[macntosh]

Another agree-er here as well as to the beauty of the children. I'm sorry you have to endure the insensitivities of others. It must be very frustrating.

Please excuse my ignorance of CP, and if I may, I would like to ask a question. Both of you said the CP was caused because of premature delivery. How does that effect the body? It is because the nervous system is not fully developed? Denise, your children's does not appear to be as severe. Is this something that will then dissipate as they age, and does any therapy help? I'm sorry to put a damper on this thread, but it is really sad when you learn of children that suffer like this. I would just like learn a little of what you all endure.

I am happy to answer and thanks for asking. What happened to our daughter is that the brain was not fully formed at time of delivary. In non-scientific terms: There is some fluid that allows messages and commands to pass through in the brain. In her brain at these points due to prematurity she has slight scarring which is only seen via a catscan. She has no physical sign of her disability except for the way she walks.

Her case is not as severe as other children, she has high muscle tone in her legs and is unable without supports or intense stretching to flatten her feet when she walks. She is what some call a "toe walker". She is in physical three times a week at this moment to work with the botox injections she recieved in her legs. We are doing this so that in the future they may not have to cut and lengthin her achelious tendons.

She also does equine therapy once a week, which is riding horses. This allows her to build trunk strength so that she in turn can in turn control her strides.

At this moment, I believe she could walk, she has taken a few steps on her own at times, but she doesn't like to fall. What a girl.

We had her delivered early becuase we experienced the same symptoms during this pregnancy as our first. However during our first pregnancy we lost our son Griffin at 32 weeks. When we saw the same things happening to my wifes body again (she is a type 1 diabetic), we decided to take our chances with whatever the lord would give us.

He certainly has blessed us with a bright minded, beutifull child and a dedicated angel for her.

So there's our story. Sorry for the long winded reply.

 

[triplefigs]

Another agree-er here as well as to the beauty of the children. I'm sorry you have to endure the insensitivities of others. It must be very frustrating.

Please excuse my ignorance of CP, and if I may, I would like to ask a question. Both of you said the CP was caused because of premature delivery. How does that effect the body? It is because the nervous system is not fully developed? Denise, your children's does not appear to be as severe. Is this something that will then dissipate as they age, and does any therapy help? I'm sorry to put a damper on this thread, but it is really sad when you learn of children that suffer like this. I would just like learn a little of what you all endure.

Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The term cerebral refers to the brain's two halves, or hemispheres, and palsy describes any disorder that impairs control of body movement. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupts the brain's ability to adequately control movement and posture.

Symptoms of cerebral palsy lie along a spectrum of varying severity. An individual with cerebral palsy may have difficulty with fine motor tasks, such as writing or cutting with scissors; experience trouble with maintaining balance and walking; or be affected by involuntary movements, such as uncontrollable writhing motion of the hands or drooling. The symptoms differ from one person to the next, and may even change over time in the individual. Some people with cerebral palsy are also affected by other medical disorders, including seizures or mental impairment. Contrary to common belief, however, cerebral palsy does not always cause profound handicap. While a child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, a child with mild cerebral palsy might only be slightly awkward and require no special assistance. Cerebral palsy is not contagious nor is it usually inherited from one generation to the next. At this time, it cannot be cured, although scientific research continues to yield improved treatments and methods of prevention.


Cerebral Palsy can affect full-term and preemie infants. Most people with CP do a variety of therapy including Physical Therapy, Occupational Therpay, Speech Therapy, Hippotherapy, and Swim Therapy. It is a life-long problem. In my kids case, they are "floppy" so they have trouble doing things other kids may not find difficult. When we go to Disney, we will use the stroller as a wheelchair as Brantley-Kate and Rees cannot walk long distances.

Rees is affected the most, and he definitely has an akward gait and run. Writing is almost impossible (his arms shake horribly). I am very blessed to even have them here. After almost losing them in my pregnancy, I find them to be true miracles and blessings. They inspire me every day. Rees especially has had a hard time (he has had approximately 10 sugeries, had a feeding tube until age 3, has 4-5 therapies a week, and has many other medical problems). He never complains, is a very flexible kid, and shows me what true courage is. I am indeed the luckiest mom in the entire world to have these three children in my life.

Here's a link for more info about CP. http://www.ninds.nih.gov/disorders/cerebral_palsy/detail_cerebral_palsy.htm#12053104

 

[macntosh]

Wow, that's a much better answer. Maybe I should go pull mine out. LOL

 

[tink2020]

Thank you Denise and Macntosh for sharing your stories..... I admire you (and your spouses ). I can't even imagine the strength it takes to raise children period (yet), and you guys are both so strong even in the midst of health problems.

Thanks again, and hug your kids for all us DDAs!

 

[triplefigs]

I am happy to answer and thanks for asking. What happened to our daughter is that the brain was not fully formed at time of delivary. In non-scientific terms: There is some fluid that allows messages and commands to pass through in the brain. In her brain at these points due to prematurity she has slight scarring which is only seen via a catscan. She has no physical sign of her disability except for the way she walks.

Her case is not as severe as other children, she has high muscle tone in her legs and is unable without supports or intense stretching to flatten her feet when she walks. She is what some call a "toe walker". She is in physical three times a week at this moment to work with the botox injections she recieved in her legs. We are doing this so that in the future they may not have to cut and lengthin her achelious tendons.

She also does equine therapy once a week, which is riding horses. This allows her to build trunk strength so that she in turn can in turn control her strides.

At this moment, I believe she could walk, she has taken a few steps on her own at times, but she doesn't like to fall. What a girl.

We had her delivered early becuase we experienced the same symptoms during this pregnancy as our first. However during our first pregnancy we lost our son Griffin at 32 weeks. When we saw the same things happening to my wifes body again (she is a type 1 diabetic), we decided to take our chances with whatever the lord would give us.

He certainly has blessed us with a bright minded, beutifull child and a dedicated angel for her.

So there's our story. Sorry for the long winded reply.

Rees' favorite is Hippotherapy too! Rees is on the right in this picture. This was Halloween last year, and Rees and the other little boy both dressed as Buzz. Too cute!

 

[triplefigs]

Wow, that's a much better answer. Maybe I should go pull mine out. LOL

No, I thought your explanation was great. I'm a Pediatric Nurse, so I tend to get a little technical. Your DD is just beautiful, and I'm glad she's doing so well.

 

[macntosh]

Your riding center looks much more refined, but ours is a great price. It's Free! It has grown from three riders a few years ago to over 350+, but now they are having difficulty with finding volunteers. It is growing so fast.

This is where Mya rides. http://www.spirithorsetherapy.com/

 

[Mom2Ashli]

Your riding center looks much more refined, but ours is a great price. It's Free! It has grown from three riders a few years ago to over 350+, but now they are having difficulty with finding volunteers. It is growing so fast.

This is where Mya rides. http://www.spirithorsetherapy.com/

I just have to tell you that if you caught me starring at your DD it would not be because of her disability. It would be because she is a beautiful striking little girl. And if I did notice that she was walking with help I would think what an amazing little girl. The world is not going to stop her.

My heart goes out to you and your family if you are getting negative looks.
But sometimes people are looking for other reasons - not always negative.

 

[Steamboat Marti]

Help!!!!! I did our shirts today. Followed the directions. And now middle dd's shirt is peeling at the corner. I used Avery Tshirt paper. Any ideas on ways to fix it?

Thanks!

Is it Avery for dark shirts?? When I used the ebay paper for dark shirts and a corner peeled up, I just placed the parchment back on the design and reironed that corner. If I remember correctly, I've heard that people have tried this after the shirts have washed. I don't think there is any harm in trying - just be careful not to burn the shirt by keeping the iron in one place too long.

 

[Steamboat Marti]

Wow, that's a much better answer. Maybe I should go pull mine out. LOL

It sure helps to have a nurse on this thread to explain things -- but I really appreciated your non scientific way. I always like to learn things, it makes me appreciate my DS7 who was born 6 1/2 weeks early.

It seems like we all have a story....

 

[dumby]

Wow, that's a much better answer. Maybe I should go pull mine out. LOL

Both answers, yours and triplefigs, are really good and show what remarkable people you are. Your children are also lucky to have such wonderful parents as you both seem to be.

God bless your families.

dumby in alabama

 

[Glynis]

The explanations of CP were both very informative. Thank you! I firmly believe that all your beautiful children are in the right place and with the right people! I'm amazed at your wonderful attitudes. I don't know how I'd respond if placed in the same situation, so please know that I think you are truly special people. All children are miracles, and it seems that these beautiful kids we've been discussing are even larger miracles. My thoughts and prayers are with you all and I thank you for being the caring parents you are! What lucky children.

Plus, it doesn't hurt that you are taking your kids to DW soon. Like I said, lucky kids!

 

[triplefigs]

Plus, it doesn't hurt that you are taking your kids to DW soon. Like I said, lucky kids!

Actually, the trip is for ME! they just get to tag along...

 

[Glynis]

Wish I could tag along. I have twins, so I understand how much work multiples are. If you needed an extra pair of hands...........

Actually, I get as much pleasure from reading trip reports as I do planning my own trips. Weird, isn't it? Oh well. We've been home from DL a month, now, and I'm already planning our next trip in Dec. of 2006. I'm trying to talk DH into an anniversary trip to the World, but so far no go. How do you all get your not into Disney spouses (or significant others) to agree to another trip to Disney? Suggestions?

 

[macntosh]

Actually, the trip is for ME! they just get to tag along...

Ditto!

 

[mommykds]

Hi, just wanted to post a picture of my kids in one of the many matching shirts I made for them...also wanted to mention that when I got home I washed the shirts in warm, regular cycle & line dried & the transfer was fine. What was really great about the "dark" transfer shirts was that the transfer was a little "slick" so when their Mickey bar melted all over them, I just wiped the chocolate off the transfer with a wipe & it came right off!

Sorry the picture is so large... I don't know how to make smaller if anyone can help with that, I'd appreciate it.....of course the shirts are lime green!