Cool Sunshades Huh?
They left me sitting here all alone! What a big boy I am!
Wednesday, August 26, 2009
Tuesday, August 25, 2009
Kids
Why is it that when kids do something cute there isn't a video camera anywhere around? Timmy's Kindergarten class was playing an adapted versoin of CandyLand today at school. Timmy was the one in charge of the switch which was used to indicate who's turn it was. Each time Timmy hit the switch a different students name would be announced. Well during game play the teacher and the other adults in the classroom got distracted by something. My 5 year old child, whom has a brain malformaton, whom some people say that there is ABSOLUTELY no way he is able to reason, had figured out the order of the names that were being announced with each press of the switch, kept pressing the switch until with the next ress of the switch would be his turn. Timmy's teacher announced that the game play could began once again. Mind you none of the adults noticed that Timmy had set the switch so that the next turn would be his. The teacher expecting the turn to be a different students was ready to help the other student count off their turn. Timmy presses the switch. The switch announces "his' name and Timmy throws his arms into the air, like YAY it's my turn again already! And starts laughing hysterically! Timmy's teacher was so confused, but yet shocked that he had figured out the turn order that her excitement got the best of her. She forgot to scold him for cheating. Yet another milestone met. Typical game playing behavior from a 5 year old, cheating.
We finally made our decision as to which Pre-K center to send Emily to. We have decided to remove her from Childcare Network, which is part of the More At 4 Pre-K Program, as well as a daycare for children from 6 weeks of age up to 12 years. Childcare Network is like a satellite center when the Public School Centers run out of room. We had Emily transferreed to J.C. Roe, one of the Public School More At 4 Pre-K Centers. I feel that Emily will have a more structured learning enviroment at J.C. Roe compared to Childcare Network. Emily is SOOOO excited to be going to a "Big Girl" school. And being able to ride a "Big Girl" school bus! We took both Emily and Timmy to Wal-Mart tonight to buy them a new backpack. Timmy chose a UNC backpack. And Emily chose a purple Tinker Bell backpack. We are still awaiting for Emily's teacher to contact us. Emily will attend J.C. Roe one day next week. The Pre-K Program does staggered enrollment, where only a set number of children attend school the first few day. Her full week will begin on Sept. 8th. With Emily attending J.C. Roe we will know exactly which days she will be out of school. She will have transportation to and from school each school day. And if by some chance she misses the bus, we only live a 15 minute walk to the school. I'll post first day of Pre-K pictures soon.
We finally made our decision as to which Pre-K center to send Emily to. We have decided to remove her from Childcare Network, which is part of the More At 4 Pre-K Program, as well as a daycare for children from 6 weeks of age up to 12 years. Childcare Network is like a satellite center when the Public School Centers run out of room. We had Emily transferreed to J.C. Roe, one of the Public School More At 4 Pre-K Centers. I feel that Emily will have a more structured learning enviroment at J.C. Roe compared to Childcare Network. Emily is SOOOO excited to be going to a "Big Girl" school. And being able to ride a "Big Girl" school bus! We took both Emily and Timmy to Wal-Mart tonight to buy them a new backpack. Timmy chose a UNC backpack. And Emily chose a purple Tinker Bell backpack. We are still awaiting for Emily's teacher to contact us. Emily will attend J.C. Roe one day next week. The Pre-K Program does staggered enrollment, where only a set number of children attend school the first few day. Her full week will begin on Sept. 8th. With Emily attending J.C. Roe we will know exactly which days she will be out of school. She will have transportation to and from school each school day. And if by some chance she misses the bus, we only live a 15 minute walk to the school. I'll post first day of Pre-K pictures soon.
Monday, August 24, 2009
10 Things About Me
I have seen this type of post on a lot of other blogs. So I thought Why Not add something like this to our blog? This way those who read our blog will have a better picture of who I am. So here goes....
1. I LOVE to read. I'm a bookworm. I'll read almost anything. My favorite aurthor's are Stephen King and Dean Koontz. I also like to read anything having to do with U.S History, National Geographics, Medical or Science. Ok, so maybe bookworm isn't the correct word, Nerd may fit better.
2. I like to draw and color. A box of the 8 standard Crayola Crayons isn't enough for me. I have to have the biggest box of crayons. Before coloring I have to organize the crayon box into same color groups. (Ie all of the blues in a group, greens in a group etc.)
3. I'm very creative. I'm always coming up with different ways to adapt Timmy's toys to make them more sensory appealing for him.
4. My zodiac sign is Aquarius, the water barer. I love being in water, swimming or just relaxing. My hubby tells me I should have been a mermaid. Oh how I wish I could, but I don't have the body to go along with the whole mermaid idea. Oh well.
5. I like to take long, quiet, peaceful walks, rather it be along the beach or in a park.
6. I'm the mom to 7, yes, SEVEN children. Six living and one precious ^Angel^ in heaven. I have 3 girls. Ages 24, 22, and 4 years. 4 boys. Ages 18, 13, 5 1/2, and our ^Angel^ who would have been 2 1/2 years.
7. My favorite foods are chicken and fish. Yes, I'm a woman who likes chocolate, but it isn't my favorite. It use to be. Maybe old age hos something to do with the lack of interest in chocolate? Or maybe I've gotten wiser with old age and now realize that the chocolate is sticking around in places that I don't want it to?
8. I enjoy going to Comedy Clubs. No favorite comedian though. As long as the person is funny they have my vote.
9. I enjoy visiting museums of all types. But I have to say art museums are my favorite.
10. I scared to death of insects, bugs, snakes, frogs, lizards and anything in the rat family. I guess that narrows down the choices for pets for the kids to only dogs and cats!
1. I LOVE to read. I'm a bookworm. I'll read almost anything. My favorite aurthor's are Stephen King and Dean Koontz. I also like to read anything having to do with U.S History, National Geographics, Medical or Science. Ok, so maybe bookworm isn't the correct word, Nerd may fit better.
2. I like to draw and color. A box of the 8 standard Crayola Crayons isn't enough for me. I have to have the biggest box of crayons. Before coloring I have to organize the crayon box into same color groups. (Ie all of the blues in a group, greens in a group etc.)
3. I'm very creative. I'm always coming up with different ways to adapt Timmy's toys to make them more sensory appealing for him.
4. My zodiac sign is Aquarius, the water barer. I love being in water, swimming or just relaxing. My hubby tells me I should have been a mermaid. Oh how I wish I could, but I don't have the body to go along with the whole mermaid idea. Oh well.
5. I like to take long, quiet, peaceful walks, rather it be along the beach or in a park.
6. I'm the mom to 7, yes, SEVEN children. Six living and one precious ^Angel^ in heaven. I have 3 girls. Ages 24, 22, and 4 years. 4 boys. Ages 18, 13, 5 1/2, and our ^Angel^ who would have been 2 1/2 years.
7. My favorite foods are chicken and fish. Yes, I'm a woman who likes chocolate, but it isn't my favorite. It use to be. Maybe old age hos something to do with the lack of interest in chocolate? Or maybe I've gotten wiser with old age and now realize that the chocolate is sticking around in places that I don't want it to?
8. I enjoy going to Comedy Clubs. No favorite comedian though. As long as the person is funny they have my vote.
9. I enjoy visiting museums of all types. But I have to say art museums are my favorite.
10. I scared to death of insects, bugs, snakes, frogs, lizards and anything in the rat family. I guess that narrows down the choices for pets for the kids to only dogs and cats!
Friday, August 21, 2009
One Small Pearl
The odds of finding one small pearl in an oyster is 1 in 12,000. The odds of finding the rare purple pearl in a Quahog clam are 1 in 100,000. But if you happen to be lucky enough to find one of these pearls, you are so excited. You start planning what you will do with the pearl. Give it away to a special friend or family member, keep it and have it set in a ring or necklace or maybe sell it and use the money to pay off some bills, buy yourself something nice or save the money for a later date. You take the pearl to a jeweler to have it appraised. When the jeweler tells you that the pearl isn't worth very much, you are saddened. All of your excitement and dreams have suddenly been shattered. You quickly get over your disappointment and go on with you life as it was before you found the small pearl.
Like finding the small pearl, there are circumstances which occur in our lives which we can just put behind us and move on. There are other situations in our lives from which we learn from our mistakes and try hard not to repeat the same mistakes twice. And there are still other circumstances that occur in our lives, if given a chance we would choose not to change one single thing.
Being the mom of a child with complex special needs, is one of those situations in my life in which I wouold not change a thing, if given the opportunity to do so. I feel so blessed and honored to have been chosen to be Timmy's mom. Timmy has taught me so many of life's lessons in his 5 years with us. Life lessons that all humans should learn and that by doing so would make the world a much better place for us all.
Timmy has taught me the true meaning of Unconditional love. Without one spoken word or physical contact, with just a smile and a giggle, Timmy is able to tell us just how much he appreciates the love and care we give him. And he is able to tell us just how much he loves and adores us. Upon entering his room the first thing in the morning and speaking to Timmy. He gives us this heart melting smile and a giggle that makes us forget "why" we are feeling so depressed and that makes us forget our complaints about the world. For a few precious moments, we cuddle. It is just parent and child exchanging of feelings, thoughts, dreams and unconditional love, without a spoken word, only through smiles, giggles and body language.
He has taught me patience. With a set routine, hard work, patience, and loving guidance, that once the smallest of milestones are reached, the joy, excitement and elation are far more appreciated, than those moments when a "typical" child reaches the same milestones.
He has taught me that it is ok to cry when faced with adversity as long as you don't linger too long in self pity. To seek out help and receive help when offered. To find the strength within myself to stnad up to the ignorance of others in this world. To have the courage to educate those people who are ignorant, not to accept their ignorance toward the disabled as the "norm" of people in this world. My belief is; Through education, we can change the world one person at a time.
He has taught me bravery. To be strong, to stand up and fight for what I believe in and for what I want. Not to accept "NO" as an answer. That if one door shuts another door will open. Just because a hundred doctors may feel that they can't offer you any medical help. This is a large world and there is at least one doctor who will be willing to open his/her heart to help. Be willing to seek and explore ALL possibilities, don't be afraid to ask questions and ask the same questions more than once until you are satisfied with the answers. And don't be afraid to ask for guidance and help in seeking out info, services, or medical treatment.
He has taught me that it is ok to dream, as long as I don't get caught up in the "what ifs?" and "why me?" of life. That in life it is no longer what "I" want, but what is best for "us." That as a mom I most of the time have to settle for second best, so that Timmy can have "the best" of thing in life. I'm thankful for Timmy's happiness and health and no longer focus on the things that Timmy "can't" do, but rather on the things that we have been blessed with that Timmy "can" do. I have learned to open my eyes, ears and heart to others, offering help and support. I have also learned that not everyday will be bitter sweet. That there WILL be days that our lives are in total chaos and WILL be turned upside down by disappointment. But the best that we can do is not to get caught up in the self pity. Rather focus on tomorrow and create a game plan with will help to overcome the disappointment and solve the issue(s) at hand.
He has taught me to live for the moment. To put the daily stresses of life behind me. To be thankful for what I have and not to spend time dwelling or wishing for those thing that I don't have. Spend time together creating memories, rather than rushing about running errands, cleaning house or paying bills. No one knows how much time we have with our special children, so make the best of each moment like it may be your last.
He has taught me simplicity. Material goods and money aren't what is important. Cuddling, singing silly songs, reading/telling stories, a walk along the beach or in a park taking in the sights and sounds together. Playing simple fun games like Peek-A-Boo or Pat-A-Cake. Laughing and smiling together. Through these simple pleasures we are teaching Timmy and learning so much more about him. The simpliest of pleasures in life money can't buy, but are the ones that all children LOVE the most.
And most importantly Timmy has taught me empathy. That if I listen with my heart I will be able to fully understand his needs and desires, through his body language, smiles, giggles, laughter and vocalizations. By listening with my heart, I will be more aware of, sensitive to, and vicariously experiencing his feelings, thoughts, and experiences without having his feelings, thoughts, and experiences fully communicated via a single spoken word.
I'm not saying that everyday with Timmy is hunky dory or peachy keen. There are days in which I'm stressed to the max, exhausted from lack of sleep, depressed and feel as though I can't go on, and days that I'm angry at myself and the world. But the rewards of being Timmy's mom out weigh the negative days one hundred fold.
Even though Timmy is unable to walk, talk, play, or learn at the same pace as a "typical" child Doesn't change the fact that he is a happy, healthy child with feelings and thoughts of his own. I don't see Timmy as a disabled child, but rather I see Timmy as a child with ABILITIES who is faced with challenges.
All that Timmy has taught me and the joy that he has brought into our lives, ABSOLUTELY NO WAY would I ever consider changing a thing! Timmy is my sunshine on a cloudy day. My cup of coffee in the morning with an extra dose of caffine. His smiles and giggles give me the strength to face the day. My breathe of fresh air, when the day seems unbearable. My ray of hope when I'm feeling down and things aren't going my way. He's my inspiration. He's my HERO!!!!!!
Like finding the small pearl, there are circumstances which occur in our lives which we can just put behind us and move on. There are other situations in our lives from which we learn from our mistakes and try hard not to repeat the same mistakes twice. And there are still other circumstances that occur in our lives, if given a chance we would choose not to change one single thing.
Being the mom of a child with complex special needs, is one of those situations in my life in which I wouold not change a thing, if given the opportunity to do so. I feel so blessed and honored to have been chosen to be Timmy's mom. Timmy has taught me so many of life's lessons in his 5 years with us. Life lessons that all humans should learn and that by doing so would make the world a much better place for us all.
Timmy has taught me the true meaning of Unconditional love. Without one spoken word or physical contact, with just a smile and a giggle, Timmy is able to tell us just how much he appreciates the love and care we give him. And he is able to tell us just how much he loves and adores us. Upon entering his room the first thing in the morning and speaking to Timmy. He gives us this heart melting smile and a giggle that makes us forget "why" we are feeling so depressed and that makes us forget our complaints about the world. For a few precious moments, we cuddle. It is just parent and child exchanging of feelings, thoughts, dreams and unconditional love, without a spoken word, only through smiles, giggles and body language.
He has taught me patience. With a set routine, hard work, patience, and loving guidance, that once the smallest of milestones are reached, the joy, excitement and elation are far more appreciated, than those moments when a "typical" child reaches the same milestones.
He has taught me that it is ok to cry when faced with adversity as long as you don't linger too long in self pity. To seek out help and receive help when offered. To find the strength within myself to stnad up to the ignorance of others in this world. To have the courage to educate those people who are ignorant, not to accept their ignorance toward the disabled as the "norm" of people in this world. My belief is; Through education, we can change the world one person at a time.
He has taught me bravery. To be strong, to stand up and fight for what I believe in and for what I want. Not to accept "NO" as an answer. That if one door shuts another door will open. Just because a hundred doctors may feel that they can't offer you any medical help. This is a large world and there is at least one doctor who will be willing to open his/her heart to help. Be willing to seek and explore ALL possibilities, don't be afraid to ask questions and ask the same questions more than once until you are satisfied with the answers. And don't be afraid to ask for guidance and help in seeking out info, services, or medical treatment.
He has taught me that it is ok to dream, as long as I don't get caught up in the "what ifs?" and "why me?" of life. That in life it is no longer what "I" want, but what is best for "us." That as a mom I most of the time have to settle for second best, so that Timmy can have "the best" of thing in life. I'm thankful for Timmy's happiness and health and no longer focus on the things that Timmy "can't" do, but rather on the things that we have been blessed with that Timmy "can" do. I have learned to open my eyes, ears and heart to others, offering help and support. I have also learned that not everyday will be bitter sweet. That there WILL be days that our lives are in total chaos and WILL be turned upside down by disappointment. But the best that we can do is not to get caught up in the self pity. Rather focus on tomorrow and create a game plan with will help to overcome the disappointment and solve the issue(s) at hand.
He has taught me to live for the moment. To put the daily stresses of life behind me. To be thankful for what I have and not to spend time dwelling or wishing for those thing that I don't have. Spend time together creating memories, rather than rushing about running errands, cleaning house or paying bills. No one knows how much time we have with our special children, so make the best of each moment like it may be your last.
He has taught me simplicity. Material goods and money aren't what is important. Cuddling, singing silly songs, reading/telling stories, a walk along the beach or in a park taking in the sights and sounds together. Playing simple fun games like Peek-A-Boo or Pat-A-Cake. Laughing and smiling together. Through these simple pleasures we are teaching Timmy and learning so much more about him. The simpliest of pleasures in life money can't buy, but are the ones that all children LOVE the most.
And most importantly Timmy has taught me empathy. That if I listen with my heart I will be able to fully understand his needs and desires, through his body language, smiles, giggles, laughter and vocalizations. By listening with my heart, I will be more aware of, sensitive to, and vicariously experiencing his feelings, thoughts, and experiences without having his feelings, thoughts, and experiences fully communicated via a single spoken word.
I'm not saying that everyday with Timmy is hunky dory or peachy keen. There are days in which I'm stressed to the max, exhausted from lack of sleep, depressed and feel as though I can't go on, and days that I'm angry at myself and the world. But the rewards of being Timmy's mom out weigh the negative days one hundred fold.
Even though Timmy is unable to walk, talk, play, or learn at the same pace as a "typical" child Doesn't change the fact that he is a happy, healthy child with feelings and thoughts of his own. I don't see Timmy as a disabled child, but rather I see Timmy as a child with ABILITIES who is faced with challenges.
All that Timmy has taught me and the joy that he has brought into our lives, ABSOLUTELY NO WAY would I ever consider changing a thing! Timmy is my sunshine on a cloudy day. My cup of coffee in the morning with an extra dose of caffine. His smiles and giggles give me the strength to face the day. My breathe of fresh air, when the day seems unbearable. My ray of hope when I'm feeling down and things aren't going my way. He's my inspiration. He's my HERO!!!!!!
Sunday, August 16, 2009
We're Back From NIH
Whew, What A Week!!!! I need a vacation now, most definately! I so wish we had taken the 2 days for ourselves AFTER the week of testing. Because I really could use a soak in a hot tub and a long relaxing swim in pool.....
We also picked up the kids a little something. We bought Emily an astronaut barbie, Timmy a set of magnetic blocks and Zach a brain teaser puzzle, which my little genius solved within a few minutes of opening the box. I'm still working on the puzzles solution. This isn't surprising, I still haven't figured out the solution to the Rubix Cube yet either.
We spent Saturday sight seeing in D.C. We love to vacation in D.C. because all of the museums are free, the transportation is easily accessable and there is always something fun to do there. I finally got to go tour the Batanical Gardens. I wish I had a green thumb and could grow plants and flowers that beautiful. I love to look at and smell beautiful flowers. I like flowers the best though IF they are not picked. It makes me so sad when something so beautiful dies.
Hubby has laid claim to one of the fur trees outside of the Batanical Gardens as "His" Christmas Tree. Doesn't hurt to dream does it? I have to admit it is a perfectly shaped tree.
We also picked up the kids a little something. We bought Emily an astronaut barbie, Timmy a set of magnetic blocks and Zach a brain teaser puzzle, which my little genius solved within a few minutes of opening the box. I'm still working on the puzzles solution. This isn't surprising, I still haven't figured out the solution to the Rubix Cube yet either.
Our visit to NIH, aside from the stress of all of the testing, was very pleasant. All of the Doctors, nurses, techs who preformed some of the tests, the volunteers and other staff members at NIH were very friendly and helpful. The food was DELICIOUS! We were able to choose from a menu full of a variety of foods, desserts and drinks. Unlike a typical hospital menu, from which you may have 2 main dishes to choose from at each meal. I do have to say though, compared to our previous stay at the Children's Inn in December 2008, the staff and other families are friendly and the place is full of noise and activities. The staff at the Family Lodge aren't as friendly and the Lodge is very dimly lit and quiet, like walking into a funeral home of sorts. The rooms and the rest of the building were clean, so I guess that is what is most important anyway.
We were invited to participate in the WAGR research project being conducted by Dr. Joan Han. Being that all of us have a mutation of the PAX-6 gene, Dr. Han felt that we would make good study candidates. To learn more about WAGR syndrome you can go here http://www.wagr.org/
Our week started out on Monday morning at 7:00am. Upon admission to the Clinical Center, we each had our vital signs taken, height and weight obtained, a visit from Dr. Han, at which time a medical history was given to her. Now let the week long testing begin! Monday was a pretty easy day when it came to testing. We both had completed all of our testing for the day by 3:30pm. Testing for the rest of the week lasted until sometimes as late as 5:30pm.
We were invited to participate in the WAGR research project being conducted by Dr. Joan Han. Being that all of us have a mutation of the PAX-6 gene, Dr. Han felt that we would make good study candidates. To learn more about WAGR syndrome you can go here http://www.wagr.org/
Our week started out on Monday morning at 7:00am. Upon admission to the Clinical Center, we each had our vital signs taken, height and weight obtained, a visit from Dr. Han, at which time a medical history was given to her. Now let the week long testing begin! Monday was a pretty easy day when it came to testing. We both had completed all of our testing for the day by 3:30pm. Testing for the rest of the week lasted until sometimes as late as 5:30pm.
Here is a list of some of the tests that I had preformed;
*Brain/Orbits MRI
*Heart/Abdominal MRI
*DEXA Scan-This is a type of X-ray, which measures the amount of body fat, muscle, bone and compares the numbers.
*A 3 Ophthalmology visit
*A 4 hour Audiology visit (I definately have no problems hearing!)
*Smell Testing- A Scratch-N-Sniff test, where we had to scratch a square and choose from 1 of 4 choices as to what we thought the smell was.
*Sensory Testing-A test to determine how well our nerves in our hands can detect extreme hot, extreme cold and vibration.
Nerve conduction Test.
Nerve conduction Test.
*EEG/EMG
*Sleep Study (How anyone sleeps comfortable hooked up to all of those wires is beyond me! I sure as heck couldn't.)
*Glucose Tolerance Test- A test used to screen for Diabetes
*Resting Metabolic Rate Test-A plastic helment was placed over our head and our breath was captured and analyzed.
*Nutrition Consultation
*Neurology Consultation
*NeuroPsychological Evaluation
*EKG
*One day for lunch I had to go into a room by myself where there was a buffet aray set up and eat foods of my choice from what was there until I was full. The foods consisted of sandwich makings (ham, turkey, cheese, peanut butter, jelly, lettuce, tomato, condiments), assortment of chips, assortment of fruits, cookies, candy, chicken nuggets, milk, apple juice and water. Probably a few other foods, but I've forgotten. I typically don't eat breakfast or lunch. So one can guess how my part of the meal buffet aray went.
*I had to drink some special water called "Heavy Water" This water cost $400 for 8oz! Yeah, you read that correctly. The water tasted like I had been sucking on a Band-Aid for hours. Yuck! The purpose of this test was to check something to do with energy.
*I had ALOT and I mean ALOT of blood taken to analyzed for specific tests
*I spent 2 entire days peeing in a gallon jug. That was really fun! Yeah right! The urine was also gathered to be tested for specific tests.
*There were a couple of other times in which I had to drink some very yucky stuff (can't remember what the specific test was, but after drinking the yucky stuff, blood and urine samples were collected for testing.)
*Vital signs, including height and weight were obtained every morning.
If there were anymore tests I can't remember, I was rendered brain dead after the 4 hour Audiology visit.
The results to the tests weren't back upon time for us to be discharged from the Clinical Center. Once Dr. Han receives the test results she will pass them on to us.
We are now in the process of making plans for Timmy's visit to NIH in mid November. Looking forward to the visit/
Thursday, August 6, 2009
Hi Ho, Hi Ho Off to NIH We Go
Floyd and I will be leaving in the morning to go to NIH (National Institute of Health), to participate in our portion of the research of WAGR Syndrome (Wilms Tumor-Aniridia-Genitourinary-Retardation). Our flight leaves at 9:30AM. We will be undergoing testing at NiIH from Aug. 10th-14th. We are taking a couple of days to ourselves, before we have to check in at NIH. We desperately need a vacation alone. Just so we can relax and not have to make decisions about Timmy's care. The past couple of months Timmy has had ALOT of surgeries, Doc appointments and hospitalizations. Not to mention our Eye Doc appointments, which have also been out of town. We both feel overwhelmed, exhausted and stressed to the max! So even though our week away we will be poked, prodded, scanned and asked the same questions a million times, we are SOOOO looking forward to our time alone.
Timmy is being left in the best possible care of his Home Health Nurses. We have signed a HIPPA release and left instructions and contact information for us and Timmy's Docs, for the nurses and Timmy's Docs, in case of a medical emergency. By us signing the HIPPA release form, we have given a few of Timmy's nurses the right to speak to Timmy's Docs, seek medical attention if needed and make medical decisions as to any treatment which may be needed. Emily will be staying with MaaMaa and Papa or Aunt Angie and Cousin Tiffany. Zach will be with his dad.
Timmy will participate in his portion of the WAGR syndrome research in mid November. By Flody and I going before Timmy, we will be able to inform the Docs as to which tests Timmy will be able to participate in. This will also give the team a chance to schedule Timmy other appointments, in areas of concern (cardiology).
At the time of the post, Timmy's blood glucose levels have been well under control. The last time that we left Timmy for an extended period of time, his blood glucose levels went wacky. We had to swallow the cost and cut our vacation short by a day and a half. Immediately upon our return home, Timmy's blood glucose levels returned to perfect. Let's see what happend this time! Wanna wager any bets? Just remember Timmy's IS a MaMa's boy!
Timmy is being left in the best possible care of his Home Health Nurses. We have signed a HIPPA release and left instructions and contact information for us and Timmy's Docs, for the nurses and Timmy's Docs, in case of a medical emergency. By us signing the HIPPA release form, we have given a few of Timmy's nurses the right to speak to Timmy's Docs, seek medical attention if needed and make medical decisions as to any treatment which may be needed. Emily will be staying with MaaMaa and Papa or Aunt Angie and Cousin Tiffany. Zach will be with his dad.
Timmy will participate in his portion of the WAGR syndrome research in mid November. By Flody and I going before Timmy, we will be able to inform the Docs as to which tests Timmy will be able to participate in. This will also give the team a chance to schedule Timmy other appointments, in areas of concern (cardiology).
At the time of the post, Timmy's blood glucose levels have been well under control. The last time that we left Timmy for an extended period of time, his blood glucose levels went wacky. We had to swallow the cost and cut our vacation short by a day and a half. Immediately upon our return home, Timmy's blood glucose levels returned to perfect. Let's see what happend this time! Wanna wager any bets? Just remember Timmy's IS a MaMa's boy!
Tuesday, August 4, 2009
The One Zillion Dollar Boy
In the 1970's we had the Six Million Dollar Man and the Bionic Woman. Almost 4 decades later we have the Incredible Miracle Zillion Dollar Boy! Isn't he cute???
It has been 2 weeks since Timmy had his trach removed. He is doing TERRIFIC!!!!! He had a decannulation follow up appointment on July 29th, at which time a sleep study was scheduled for Monday Aug. 3rd. Yeah, we were surprised and impressed that they were able to get the sleep study scheduled so fast.
According to the paperwork that we were given for the sleep lab, we were suppose to arrive by 6:30PM. We called and requested a later arrival time, because Timmy doesn't typically go to bed until 9:00PM. Big mistake! And as the saying goes, you learn from your mistakes.....
We arrived at UNC Hospital at a little past 8:00PM. It took Timmy's sleep tech 1 hour BEFORE she came in to hook him up to all of the necessary wires for the sleep study. It takes about an hour to hook someone up to all of the wires and make sure everything is hooked up and working properly. So of course, Timmy fell asleep. So an hour of study time was lost.
Dad asked how Timmy did, but of course the tech "can't" and/or wouldn't say anything except that they were able to get 5-6 hours of study time. DUH! At least 6 hours of study time, whether the patient sleeps or just lays awake is needed BEFORE insurance will pay.
Timmy has an appointment on Aug. 19th with his ENT (Dr. Zdanski) to go over the results of the sleep study. Once the sleep study is scored, it is passed on to someone in Pulmonology for review. So hopefully Pulmonology will have time to have reviewed the study before our visit.
My main concern is that Timmy may be having some apnea episodes. He doesn't drop his oxygen saturations, but if he is sleeping on his back, he does snore. In my opinion, when Timmy is placed on his back to sleep his sleep is restless, compared to that if he is placed on his side, which in my opinion is a much more peaceful sleep. Even though Timmy is hooked up to a pulse/oximeter monitor at night while he sleeps, I find myself going in to check on him several time a night. Once we get the results to the sleep study, IF the study shows that everything is ok, I'll be able to relax and get some much needed rest myself. But until then I'll worry and keep my nightly vigil. Isn't that what a mom is suppose to do?
Saturday, August 1, 2009
Protect Your Fur Babies
I'm an animal lover, dogs and cats are my favorite. Growing up I always had a pet dog or cat. I can't tell you how many times I have shared my candy (including chocolate) and food with my fur baby. Unbeknownst to me, I was playing Russian Rullette with their life. Until I read the following article, I never realized just how many foods, plants and medications are harmful to my fur babies.
HAMSTEAD DACHSHUND SAVED FROM ONION OVERDOSE
"People food" can pose fatal risks to families' furry friends
Rommel, a dachsund belonging to the Prince family, had a close call after eating an onion.
By Ben SteelmanBen.Steelman@StarNewsOnline.com
Published: Wednesday, July 29, 2009 at 2:30 p.m.
It was a warm summer weekend, so Scott Prince of Hampstead and his wife invited friends over to their back yard for a barbecue.
"We grilled us some kebabs," Prince said.
A great time was had by all - until one of the kebabs landed on the ground. The Princes' 2 1/2-year-old, 15-pound dachshund, Rommel, rushed in and gobbled down a roasted onion.
Big mistake: In no time, the dog was deathly ill. The Princes had to rush Rommel to the Animal Emergency and Trauma Hospital of Wilmington.
This story ends happily, Rommel made a total recovery. To do so, however, the dog spent several days at the emergency hospital and at Topsail Animal Hospital. Meanwhile, a quick Internet search showed the Princes they were lucky.
Onions are extremely toxic to dogs in any form: raw, cooked, powdered or dehydrated. Onions contain a chemical called thiosulphate which is harmless to people; however, dogs (and cats) lack the ability to digest it. In a dog's body, it can cause red blood cells to rupture, leading to a potentially life-threatening form of anemia. Eating a little pizza with onions, or a bit of onion might not be harmful, since thiosulphate's effects are dose-dependent. Eat enough, however, and the animal might soon show vomiting and diarrhea.
The Princes had no idea that onions were potentially dangerous - and they aren't alone. Many pet owners don't recognize that their kitchens and medicine chests contain dozens of everyday ingredients that might be fatal to cats or dogs.
Consider, for example, sugar-free gum. Many commercial brands of gum, and some candies, contain an artificial sweetener called Xylitol. It's safe for humans, but in dogs, Xylitol can cause a dangerous surge in insulin. Just 3 grams of Xylitol can kill a 65-pound dog, according to the Journal of the American Veterinary Medical Association.
Dr. Meghan Tayloe, a veterinarian with Highsmith Animal Hospital in Wilmington, said a number of clients had brought in dogs with Xylitol poisoning in the past few months. Dogs can be saved if treated in time, but treatments will likely involve an overnight hospitalization and an infusion of intravenous fluids.
Lots of people know that chocolate is bad for dogs and cats; it contains a chemical, theobromine, which can overstimulate a dog's heart or cause an irregular heartbeat. Again, the effects are dose-dependent; generally, a large dog will have to eat more than 8 ounces of semi-sweet chocolate to be affected, but small dogs might die after eating as little as 4 ounces. (Cocoa powder and cooking chocolates are more toxic.)
Not everyone, however, realizes that grapes and raisins are bad for dogs, Tayloe said. The fruit causes kidney failure for reasons that are not clearly understood; however, as little as a single serving of raisins can be dangerous, according to the Animal Poison Control Center.
Macadamia nuts can lead to muscle spasms or paralysis; symptoms have been reported with as few as six kernels, according to veterinary pathologist Dr. Ross McKenzie.
Large quantities of salt can lead to an imbalance in a dog's electrolytes, Dr. Tayloe said.
Fortunately, since icy roads are rarely iced in this area, salt poisoning is not too much of a threat.
Human medicines can also be a threat to your pet. Acetaminaphen, the active ingredient in Tylenol, is especially deadly for cats, Dr. Tayloe said. Vitamins may contribute to iron toxicity in dogs, and some children's vitamins might contain Xylitol.
The ASPCA has created a list of 101 things that could be harmful to your pet dog or cat. Here is a list of the foods and plants that you should make sure your dog or cat avoids eating. A complete list can be obtained from the ASPCA or your local vets office.
HARMFUL FOODS THAT YOUR PET SHOULD AVOID
*Avocados
*Chives
*Chocolate (all forms)
*Coffee (all forms)
*Onions and onion powder
*Garlic
*Grapes
*Raisins
*Macadamia nuts
*Milk
*Alcoholic beverages
*Moldy or spoiled foods
*Salt
*Fatty foods
*Gum, candies or any food sweetened with Xylitol
*Raw/Uncooked Meat, Eggs and Bones
*Tea leaves
*Raw yeast dough
HARMFUL PLANTS THAT YOUR PET SHOULD AVOID
*Aloe
*Amaryllis
*Andromeda Japonica
*Asian Lily
*Asparagus Fern
*Australian Nut
*Autumn Crocus
*Azalea
*Belladonna
*Bird of Paradise
*Bittersweet (American and European)
*Black Locust
*Branching Ivy
*Buckeye
*Buddhist Pine
*Caladium
*Calla Lily
*Castor Bean
*Ceriman
*Clematis
*Cordatum
*Corn Plant
*Cycads
*Cyclamen
*Daffodil
*Daylily
*Devil's Ivy
*Dieffenbachia
*Dumb cane
*Easter Lily
*Elephant Ears
*Emerald Fern
*English Ivy
*Eucalyptus
*Ferns
*Fiddle-leaf Philodendron
*Gold Dust Dracaena
*Florida Beauty
*Foxglove
*Glacier Ivy
*Gladiolas
*Golden Pothos
*Heavenly Bamboo
*Honeysuckle
*Hurricane Plant
*Hyacinth
*Hydrangea
*Iris
*Jerusalem Cherry
*Jimson Weed
*Kalanchoe
*Lantana
*Lilies (all Lilium species)
*Lily of the Valley
*Lupine
*Marble Queen
*Morning Glory
*Mother-in-Law
*Mountain Laurel
*Narcissus
*Needlepoint Ivy
*Nephthysis
*Nightshade
*Oleander
*Panda
*Peach Lily
*Philodendron
*Poison Hemlock
*Precatory Bean (rosary pea)
*Privet
*Red Emerald
*Rhododendron
*Ribbon Plant
*Sago Palm
*Satin Pothos
*Schefflera
*Striped Dracaena
*Sweetheart Ivy
*Tulip
*Water Hemlock
*Wisteria
*Yew
When one of our fur babies get sick we want so much to make them feel better. Sometimes without thinking we give our fur babies human medications to "try" to ease their pain or symptoms. Medications that are safe for humans, these same medications are toxic to dogs and cats.
HARMFUL MEDICATIONS THAT YOUR PET SHOULD AVOID
*Non-steroidal anti-inflammatory medications (eg. Motrin, ibuprofen, aspirin, etc...)
*Acetaminophen (eg. Tylenol)
*Cold and flu medications
*Diet pills
*Antidepressants
*Anti-cancer drugs
*Vitamins
*Tobacco products
Protect your pets like you would your child. Pet proof your home. Keep foods, medications, household cleaners, pest insectisides and other sharp or small objects out of your fur baby's reach. By taking these simple precautions, your fur baby will be a part of your family for many years.
For more http://www.aspca.org/
Animal Poison Control phone number (888) 426-4435
HAMSTEAD DACHSHUND SAVED FROM ONION OVERDOSE
"People food" can pose fatal risks to families' furry friends
Rommel, a dachsund belonging to the Prince family, had a close call after eating an onion.
By Ben SteelmanBen.Steelman@StarNewsOnline.com
Published: Wednesday, July 29, 2009 at 2:30 p.m.
It was a warm summer weekend, so Scott Prince of Hampstead and his wife invited friends over to their back yard for a barbecue.
"We grilled us some kebabs," Prince said.
A great time was had by all - until one of the kebabs landed on the ground. The Princes' 2 1/2-year-old, 15-pound dachshund, Rommel, rushed in and gobbled down a roasted onion.
Big mistake: In no time, the dog was deathly ill. The Princes had to rush Rommel to the Animal Emergency and Trauma Hospital of Wilmington.
This story ends happily, Rommel made a total recovery. To do so, however, the dog spent several days at the emergency hospital and at Topsail Animal Hospital. Meanwhile, a quick Internet search showed the Princes they were lucky.
Onions are extremely toxic to dogs in any form: raw, cooked, powdered or dehydrated. Onions contain a chemical called thiosulphate which is harmless to people; however, dogs (and cats) lack the ability to digest it. In a dog's body, it can cause red blood cells to rupture, leading to a potentially life-threatening form of anemia. Eating a little pizza with onions, or a bit of onion might not be harmful, since thiosulphate's effects are dose-dependent. Eat enough, however, and the animal might soon show vomiting and diarrhea.
The Princes had no idea that onions were potentially dangerous - and they aren't alone. Many pet owners don't recognize that their kitchens and medicine chests contain dozens of everyday ingredients that might be fatal to cats or dogs.
Consider, for example, sugar-free gum. Many commercial brands of gum, and some candies, contain an artificial sweetener called Xylitol. It's safe for humans, but in dogs, Xylitol can cause a dangerous surge in insulin. Just 3 grams of Xylitol can kill a 65-pound dog, according to the Journal of the American Veterinary Medical Association.
Dr. Meghan Tayloe, a veterinarian with Highsmith Animal Hospital in Wilmington, said a number of clients had brought in dogs with Xylitol poisoning in the past few months. Dogs can be saved if treated in time, but treatments will likely involve an overnight hospitalization and an infusion of intravenous fluids.
Lots of people know that chocolate is bad for dogs and cats; it contains a chemical, theobromine, which can overstimulate a dog's heart or cause an irregular heartbeat. Again, the effects are dose-dependent; generally, a large dog will have to eat more than 8 ounces of semi-sweet chocolate to be affected, but small dogs might die after eating as little as 4 ounces. (Cocoa powder and cooking chocolates are more toxic.)
Not everyone, however, realizes that grapes and raisins are bad for dogs, Tayloe said. The fruit causes kidney failure for reasons that are not clearly understood; however, as little as a single serving of raisins can be dangerous, according to the Animal Poison Control Center.
Macadamia nuts can lead to muscle spasms or paralysis; symptoms have been reported with as few as six kernels, according to veterinary pathologist Dr. Ross McKenzie.
Large quantities of salt can lead to an imbalance in a dog's electrolytes, Dr. Tayloe said.
Fortunately, since icy roads are rarely iced in this area, salt poisoning is not too much of a threat.
Human medicines can also be a threat to your pet. Acetaminaphen, the active ingredient in Tylenol, is especially deadly for cats, Dr. Tayloe said. Vitamins may contribute to iron toxicity in dogs, and some children's vitamins might contain Xylitol.
The ASPCA has created a list of 101 things that could be harmful to your pet dog or cat. Here is a list of the foods and plants that you should make sure your dog or cat avoids eating. A complete list can be obtained from the ASPCA or your local vets office.
HARMFUL FOODS THAT YOUR PET SHOULD AVOID
*Avocados
*Chives
*Chocolate (all forms)
*Coffee (all forms)
*Onions and onion powder
*Garlic
*Grapes
*Raisins
*Macadamia nuts
*Milk
*Alcoholic beverages
*Moldy or spoiled foods
*Salt
*Fatty foods
*Gum, candies or any food sweetened with Xylitol
*Raw/Uncooked Meat, Eggs and Bones
*Tea leaves
*Raw yeast dough
HARMFUL PLANTS THAT YOUR PET SHOULD AVOID
*Aloe
*Amaryllis
*Andromeda Japonica
*Asian Lily
*Asparagus Fern
*Australian Nut
*Autumn Crocus
*Azalea
*Belladonna
*Bird of Paradise
*Bittersweet (American and European)
*Black Locust
*Branching Ivy
*Buckeye
*Buddhist Pine
*Caladium
*Calla Lily
*Castor Bean
*Ceriman
*Clematis
*Cordatum
*Corn Plant
*Cycads
*Cyclamen
*Daffodil
*Daylily
*Devil's Ivy
*Dieffenbachia
*Dumb cane
*Easter Lily
*Elephant Ears
*Emerald Fern
*English Ivy
*Eucalyptus
*Ferns
*Fiddle-leaf Philodendron
*Gold Dust Dracaena
*Florida Beauty
*Foxglove
*Glacier Ivy
*Gladiolas
*Golden Pothos
*Heavenly Bamboo
*Honeysuckle
*Hurricane Plant
*Hyacinth
*Hydrangea
*Iris
*Jerusalem Cherry
*Jimson Weed
*Kalanchoe
*Lantana
*Lilies (all Lilium species)
*Lily of the Valley
*Lupine
*Marble Queen
*Morning Glory
*Mother-in-Law
*Mountain Laurel
*Narcissus
*Needlepoint Ivy
*Nephthysis
*Nightshade
*Oleander
*Panda
*Peach Lily
*Philodendron
*Poison Hemlock
*Precatory Bean (rosary pea)
*Privet
*Red Emerald
*Rhododendron
*Ribbon Plant
*Sago Palm
*Satin Pothos
*Schefflera
*Striped Dracaena
*Sweetheart Ivy
*Tulip
*Water Hemlock
*Wisteria
*Yew
When one of our fur babies get sick we want so much to make them feel better. Sometimes without thinking we give our fur babies human medications to "try" to ease their pain or symptoms. Medications that are safe for humans, these same medications are toxic to dogs and cats.
HARMFUL MEDICATIONS THAT YOUR PET SHOULD AVOID
*Non-steroidal anti-inflammatory medications (eg. Motrin, ibuprofen, aspirin, etc...)
*Acetaminophen (eg. Tylenol)
*Cold and flu medications
*Diet pills
*Antidepressants
*Anti-cancer drugs
*Vitamins
*Tobacco products
Protect your pets like you would your child. Pet proof your home. Keep foods, medications, household cleaners, pest insectisides and other sharp or small objects out of your fur baby's reach. By taking these simple precautions, your fur baby will be a part of your family for many years.
For more http://www.aspca.org/
Animal Poison Control phone number (888) 426-4435
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