My photo
I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Sunday, January 30, 2011

Sunday - School Podcast - Gardening

I have to admit I had forgotten all about checking Timmy's class website to see if any podcast had been recently posted. Fortunately for me, Timmy returning to school following Christmas break was delayed, due to snow. So I have only missed posting 2 podcast.

Friday, January 28, 2011

Round Three With A Twist

Winter is my least favorite season. I hate having to bundle up in layer upon layer of clothing. I hate being cold. I hate when my babies get sick and have to suffer through the aches, pains, fevers, spitting up, loss of appetite etc. that goes along with the flu or a cold. It breaks my heart that during these illnesses that I can't just take away all of their blah and leave them happy, smiley and care free once again.

During the winter it seems that no matter how careful we are by frequently washing hands and by sanitizing items and surfaces once a person has finished using it, the inevable happens, someone gets sick.

Timmy was the lucky or should I say the unlucky one. He was the first in the family to be diagnosed with the flu. For a child with a compromised immune system, he ended up having the mildest case of the flu that I have ever seen, thank goodness. Like most kiddos who have compromised respiratory systems, when Timmy gets sick his condition can go downhill very rapidly. Forty-eight hours with a temperature, 2 days of missing school, and a productive cough, this was the extent of Timmy's flu symptoms and its full course.

Now Emily and Nate both have been diagnosed with the flu. Emily's symptoms seem to be similar to those Timmy has. Poor Nate has not only these symptoms, but the achiness, runny nose, spitting up, and a cronic ear infection. It has been 4 days since he has shown symptoms of the flu and he just is starting to turn the corner for the better. It breaks my heart to look into his puppy dog eyes, which seem to be pleading with me to take away the aches and yuckiness of his illness and all I can do is cuddle with him and try to will the medication to work faster and will his body to get well soon.

I'm counting down the days until the first of April. At which time here the weather should be much warmer. My favorite season of the year. Only 61 days to go!

Wednesday, January 26, 2011

Happy 15th Birthday !



Happy 15th birthday Zachary!!!!

You have grown into a very Loving, Caring Polite, Dependable, Helpful boy. (Well, you are a teenager, so these characteristics only occur when you want them to be shown to others.)

There are a couple of events leading up to your birth that are vivid in my mind.

My OB/GYN decided that being the ultrasound showed that you weighed over 8lbs, that it was time to induce my pregnancy at 37+ weeks gestation. 

I was admitted to the hospital on Jan. 24th, so that an amniocentesis could be preformed to check your lung maturity before my induction. The test results came back positive that your lungs were definately mature. 

Ray, Ray and your older brother, Linwood (Jr.) came up to visit. Many, many years ago, a pack of Energizer batteries had a bright green sticker which informed customers of the battery test strip provided on the packaging, whcih indicated that the package of batteries were indeed fresh. 

With this pointer finger of his left hand in his mouth, Jr. poked his little  right hand, which held the sticker, through the bed rail and offered me the bright green Energizer sticker. While doing so, he softly and with a shaky voice from being afraid said "Happy Birthday Mommy!" This brought tears of joy to my eyes. A simple sticker offered to me as a birthday present. A simple sticker that most people would look at as just another piece of trash. Was given to me with so much love and from the heart by a humble 4 year old, meant so much to me.

 I asked my Nurse for an armband and some tape, which she provided me with. I placed my special birthday sticker on that armband and secured it into place with tape. I proudly wore the armband the entire time I was in the hospital.  I still have this armband safely put away with other momentos from years past.

. The vision of my hyperactive, yet loving 4 year old offering me such a simple gift of love, stays with me to this day. That was the best birthday present to this day I have ever received.

There are a couple of numerical facts, which are interesting pretaining to your birth and my birthday;

1. The year of your birth (1996), reverse the last 2 digits and you have my year of birth (1969)

2. The numbers of your time of birth (3:43PM)  + The numbers of your birth weight (7lbs 2oz.) + the two digits in your birth day (27th) = the age in which I would be on my birthday (27) on Jan. 27th, 1996.

3. Starting at your 1st birthday, the number of years you are or when one adds the two digits in your age, when I add the two digits of my age  upon my birthday, will either equal your corrent age or the two digits in our age will be the same. For example, take your age this year, (15) upon my birthday Jan. 27th (tomorrow) the two digits in my age (42) will also equal (6). 1,5 =6 AND 4,2 =6 . This pattern continues or some variation of it for many, many many, years.


Sunday, January 23, 2011

You Are 6 - Months Old


This is one of my favorite pictures of you. You have the sweetest expression on your face and I just adore the way that you have your hands together.

This past month has been an exciting time. You had your 1st. Christmas. And a lot of milestones accomplished.
You learned to push up on your arms. And you are willing to play alone for a few minutes, while mommy takes care of necessary housework.

You really enjoy floor time. Now that you are able to push yourself up with your arms, you tend to push yourself backwards and get yourself trapped in comprosmsing positions

You got your first 2 bottom teeth this month. You look sooo cute when you smile and show those pearlly white teeth.
You absolute HATE having to sit, even for short periods of time. I wonder if this could be a sign of what is to come once you become more mobile.

You have a wonderful personality, always smiling and laughing. You are very inquisitive, wanting to explore and learn how things work that are within your reach. You are also demanding. You are truly a routine oriented little guy. Everything in your life HAS to be kept on schedule or you have a terrible meltdown. You ability to focus and track people and objects has greatly improved. You LOVE playtime with your brother Timmy. After your breakfast you insist (by fussing) if we don't go into Timmy's room to spend time with him while he is getting ready to start his day.
You are starting to want to put yourself to sleep at night, rather than mommy rocking you to sleep. On the nights that you rather self soothe yourself to sleep, I miss our quite quality time that we share at bedtime.
This is a picture of you and daddy during your 2nd snow storm. The 1st snow storm in which we received 4-+ inches of snow. We both had an eye doctor appointment at Duke. After a long day of doctor appointments and returning home late, mommy didn't think about taking any pictures.

Our adventure together continues. What will next month bring? I can hardly wait to see.



Thursday, January 20, 2011

Some Cuteness To Share

Timmy's Autumn Kindergarten Picture. Is he just the cutest?!

My 13 year old son, Zachary, was given a class assignment during the 1st. week of school. The assignment was for him to write a short biography about himself. This assignment was to help the teacher to get to know her students better. Zachary's teacher called me yesterday to discuss the paper that Zachary had submitted to her. She just thought that it was so touching, even though it wasn't exactly what the assignment that was assigned was suppose to be. When Zachary got home, I asked him why he hadn't followed the directions that the teacher had given him for his biography. With tears welling up in his eyes, he says, "I'm sorry mom! But my teacher has the next 9 months to get to know me. I feel that everyone should get to know Timmy too." All I could do was to give him a hug! What a loving and caring big brother Timmy has. Here is a copy of the paper that Zachary submitted to his teacher. I asked his teacher to email me a copy and she did. I worn you, this brought tears to my eyes. Maybe it is because I'm the proud parent of both of these special boys!
Zachary
September 2, 2009
Nowell-3rd
Timothy
It was five years ago when my little brother was born. I was 7 years old. I remember he weighed 1lbs 6 ounces and he was only a foot in length. He was born 2 months early, so he had to stay in the hospital. I remember my mom sitting down with me and explaining to me that my little brother was very sick. And because he was so sick he had to be on a speical machine, which was helping him to breathe. I also remember her telling me that he had Down Syndrome, that his brain was abnormal, he has a small head, was born without any eyes, that he has diabetes and that no one was sure if he could hear. I started to cry and I asked, "Will he ever be able to play with me?" My mom told me that yes he would be able to play with me, but only in a different way. That no one was sure, but Timmy may never be able to walk, run or talk.
Being I was so young, my mom had to get special permission from someone at the hospital, so that I could go and see him. He was so small and was hooked up to alot of wires. I was so scared! I remember thinking, if I could have 1 wish, it would be for my brother to be on and to come home soon. My mom broought along a book for me to read to him. I don't remember the name of the book. I did have fun reading to him. And all of the nurses in the NICU told me I was so cute.
Four and a half months after he was born, it sure seemed a lot longer than that to me, the doctor's said it was ok for him to go home. While my mom was busy getting things at her house ready for Timmy to come home, I had to stay with my dad, at his house. When Timmy finally was home and I was able to see him, I asked my mom if I could hold him. She said yes. He was still very smal, weighing only 7lbs 2ozs. But I enjoyed holding him for the first time.

One afternoon when I got home from school, I noticed an unfamiliar car in our driveway. When I entered the door I found a strange person in out living room. I went to ask my mom who she was. My mom told me that we were going to have nurses to help us care for Timmy. I personally didn’t like this nurse, because she was boring, rude and never paid much attention to Timmy. All she did was read a lot. My mom didn't keep this nurse around very long.

The one thing that Timmy hates the most is having his teeth brushed. One morning not too long ago, Timmy's nurse told him it was time for him to get his teeth brushed. Timmy did what he usually does, which was to shake his head no. But this time when the nurse had him to touch the tooth brush he said "Oh man!" That was so funny!! It was also the first time that I had heard Timmy say something other than MaMa.

When my brother was born he had to have a tracheostomy to help him breathe, because both of his nasal passages were blocked. Two months ago he had a sleep study. When he came back the doctors had taken his trach out. I was so happy and proud of my little brother.
Timmy has alot of medical issues, I still enjoy playing with him. My favorite game that we both like to play is when I take him for a fast ride around the house, pushing him in his toddler rocker. We use to play a similar game, when Timmy was younger and used a baby walker. He just thinks this game is so very funny. I love to hear him laugh, because it makes me feel good to know that I'm making him happy.
I LOVE my brother Timmy!!!!!!!!

Friday, January 14, 2011

Meet The GrandKids

Meet Distiny Marie. Age 2 and already potty trained and has been since she was 18 months old. She is truly a Mommy's girl.

Meet Jeremiah Ethan. Age 4. He was given his Uncle Timmy's middle name. Want to know facts about "Thomas And Friends?" He is the one to ask. He is hightly obsessed with "Thomas" and has been since he was about 1 year old.

This is my daughter Tamarah Kali. She is 23 years. I think that she looks ALOT like me. She is a very caring, loving, generous, helpful, respectful, humble, (geez I can't think of anything negative to say.) Except that she can have one heck of an ATTITUDE when she wants or doesn't get her way!

Emily and Jeremiah.
wmily: I'm the cute one.
Jeremiah: No, I'm the cute one.

Thursday, January 13, 2011

Video - Mom Speaks with the Director of Special Education

Have you had to face this type of situation???


I experienced this same situation with my now 23 year old daughter, Tamarah, when she was in the 2nd grade.

From infancy to age 3 years, Tamarah had chronic reoccurring ear infections, which led to a speech impairment and minor hearing loss. Following the placement of ear tubes on numerous occasions and 2 years of speech therapy, things worked themselves out for the better for her.

It was apparent when Tamarah started school that there was a problem. She had trouble recognizing her ABC's and core reading words. By the middle of 1st grade, I had a parent-teacher conference, at which time I voiced my concerns about Tamarah having trouble reading. I wanted her tested, so that she could be placed in a special Ed class for extra reading help. The extra attention and help that she was getting at home from me didn't seem to be helping to improve her reading ability. I was assured that she wasn't that far behind and by the end of the school year, her teacher expected that Tamarah would catch up to her peers in her reading. Not knowing any better I bought this explaination.

By the end of the first grading period of Tamarah's 2nd grade year, she was still having problems reading and comprehending what she had read or what someone else had read to her. I requested a parent-teacher conference. It took 3 weeks for the teacher to get this conference setup. Myself, the assistant principal, the schools Special Ed teacher, the school counselor and a couple of other people whom I can't recall.

To make a long story short. I stated my concerns and requested that Tamarah be tested. We all went around and around on why I felt that she desperately needed some type fo formal testing and the members of the meeting stating why they felt that she didn't. By the end of the meeting I was soooo frustrated, but I had won the argument. They agreed to test Tamarah.

It took 2 weeks for me to receive the necessary paperwork that I needed to sign before the testing could be completed. And yet another 2 weeks before the testing actually took place. Once I was notified that the testing had been completed and that Tamarah wasn't eligable for special placement for reading help. I requested a meeting so that I could have the results of the testing explained to me. Come to find out all that the testing intelled was Tamarah reading from a long list of words! Come on, she was able to read words from a given list. THAT WASN'T THE PROBLEM OR EVEN MY CONCERN!

Being I was getting nowhere, I just dropped the issue and gave Tamarah even more of my undivided attention at home with reading and reading comprehension.

At the time I didn't realize that as a parent I had certain rights. Having Timmy has taught me things that I wish I had known many years ago.

*A parent has the right to request that their child be tested when there is a concern. And the school system MUST preform these test to a certain standard.
*A parent has the right to be present during the testing.
*A parent has the right to know who will be doing the testing and under what enviroment the test will be conducted.
*A parent has the right to know what materials, strategies and techniques will be used during the testing.
*A parent has the right to request a meeting in which the test results are shared and explained.
*A parent has the right to a written copy of these test results.
*A parent also has the right to take their child for testing by an independant person not associated with the school system for a second opinion. And to have the opportunity to present these findings to the team memebers involved on the school level.

My advice to parents of a Special Needs child; know your rights and DEMAND what you feel your child needs and deserves in order to be as successful in school and life to the best of their ability.

Monday, January 3, 2011

Christmas Gifts - 2010

I know, I know. I'm a bit behind with this post. But as the saying goes, better late than never. During the day I'm either feeding Nate, cleaning house, there is a  Doc appointment to attend or something else comes up that takes me away from the computer. So when nighttime arrives and I do have a few minutes, I choose to go to bed early instead of updating the blog.

We or more accurately Floyd, didn't take any Christmas Day pictures of the kids opening their gifts from Snata. He only took video. So I won't bore you with any long video clips. Here are a few pictures that I took of the kids a couple of days before Christmas.




Here are some of the gifts that the kids received from Snata, family members and friends, that are their favorite and mine.


Nate sitting in his Fisher-Price Bounce N Spin Froggy. I like this toy because of the toys, its bright colors, and the music that plays when the frogs eyes are spun. This teaches cause and affect and Hand Eye coordination. The only thing that I dislike about this toy is that it doesn't have any lights. A better choice would have been Fisher-Price Step and Play. It has lights, music and lots of interactive toys. Unfortunately we didn't find this until just before Christmas.

Sensory Symphony by Sassy. This is Timmy's favorite toy. Each fish has a different texture. There is a volume control switch. And there is 3 modes of play; continuous music, make your won song (each individual fish has it's own musical note), and finish the tune. 

LOL Roll Over Rover - This dog is hilarious! The dog actually rolls over and laughs. This is Timmy's toy, but it is Nate's favorite. I believe it is because of the color contrast (black and white). Nate loves to watch the dog roll over and laugh. He just gets hysterical when we lay him on the floor with the dog. The dog has a motion sensor to restart the dogs antics once they stop. This toy helps promote cause and effect.

Chatimal - I say what you say - Unfortunately this toy wasn't exactly what I was hoping. But it is very cute. This is Timmy's toy. The Chatimal repeats every word or sound that it hears. The down side is that the repeated words are sped up and the sound quality isn't that great. So I'm on the hunt for a toy that does something similar, but of better quality

Melissa And Doug Shape Sorter - I really like this. The pieces are small enough for Timmy to be able to grasp easily. And the fact that the shapes are to be placed on a peg rather than Timmy having to search a container for the proper matching shape hole, is a plus. The bright colors are a plus as well.

Fisher-Price Laugh and Learn Basketball - Bright colors, volume control, music, lights, cause and effect and it helps to teach numbers/counting
1-5.
V-Tech Baby's Learning Laptop - Bright colors, music, lights, volume control, raised buttons and cause and effect. This toy also helps to teach animal sounds, object names andcounting.

Bumbo Seat with Play tray - We bought this from Target. The play tray was sold seperately and is a must for playtime in the chair. This chair promotes great sitting posture.

This is Emily's favorite gift. Why did we buy a cell phone for a 5 year old you may be asking. Well, its intended use isn't for talking, but rather for playing games. After looking at the prices for PSP's and each game that would be needed to go with the PSP, we decided that giving Emily a cell phone in which to play games would be a better choice. 1. This phone was FREE. When we recently upgraded our phones, we added 2 new Smart phones. This allowed us to be eligable to choose a FREE phone.  2. Emily LOVES playing games on Floyd's phone. The games that she chooses to play are FREE or only cost $0.99 each. Compare the price of these games to those of a PSP, we come out way ahead in savings. Besides, with a PSP there are accessories that she would want and we would have to find someway to store each game cartridge when travelling. With the cell phone we only have the phone to find a safe place to store when it isn't in use.

This MP3 player is Zach's favorite. Zach LOVES music and singing. He uses MP3Rocket to download free music to his player. The kid has to charge the internal batter at least once a day. Twice if he uses the player instead of his stereo on weekends. Thank goodness the player comes with a rechargable battery. Or else we would be broke from having to replace batteries!

We bought this gift for Timmy so that he can feel more involved with his meal preparations. All of Timmy's meals are made from scratch and pureed. We use no butter, oils or salt when preparing his meals. But we do use ALOT of herbs. So we felt that Timmy would gain a lot from helping to grow and use his own herbs to put into his meals. No sight is necessary for this activity. And it will help promote the use of his hands and the sense of smell.

Blog Archive