Happy Halloween

Here is our Little Princess in her Halloween costume. If you can't tell, she is supposed to be dressed up like a Princess. But being 4 years old and independant, she had her own idea as to what she felt that a Princess should look like. I wanted to add a tiara in her hair, more jewelry and for her to wear different shoes, but she wasn't having any of it. So dad took her out Trick-Or-Treating for about an hour. She came home with enough candy to last all of us for a year! You are probably wondering "why" we didn't take Timmy out Trick-Or-Treating? Well, for several reasons; 1. He can't eat the candy and Emily got enough for the entire family for a year! 2. He gets very restless just sitting in his kidkart, when we aren't doing much to stimulate him. 3. I was scared that he might pick up some virus, being out around all o fthose strangers. Even though Timmy has had his swine flu and his seasonal injections, just the thought of the shot not working scares the wholey cow out of me!

Here are a  few pictures from Halloween past.....

Timmy's 1st Halloween,
October 2004.
He was almost 1 year old!

Halloween of 2006. At the Pumpkin Patch. Timmy is almost 3 years old!

Halloween of 2006. At the Pumpkin Patch.

Emily is 13 months old. Timmy is almost 3 years old. Boy have they both grown! And Timmy has come a looong way developmentally.

ENT Visit Today

Timmy had an ENT (Ear, Nose, Throat) visit with Dr. Z today. Dr. Z checked Timmy's ears. Ear tubes are still in place and no signs of any ear infections. Yay! We discussed Timmy's last sleep study results. Timmy has a couple of episodes of centeral apnea. BUT Dr. Z feels that this isn't a concern at this time, being that Timmy only dropped his O2 saturation level once (90) for only 1 minute. Nothing else of concern was noted on the sleep study.  We discussed Timmy's PRN oxygen orders. Dr. Z doesn't want Timmy's O2 saturation levels to drop below 92. If they maintain below 92 for a period of time without rebounding, he wants us to call him or the Dr. on call immediately.

It has now been THREE (3) months since Timmy had his trach removed. WOW, I can't believe it has been that long already. Time sure has flown by. What better way to memorialize this event, but a picture of Timmy with the Doctor who made this whole event possible.  (Sorry the picture quality isn't that good. All I had with me was my cell phone camera. I have asked Santa for a Digital camera for Christmas.)

After scoping Timmy to evaluate his airway, Dr. Z had faith that Timmy "could" possibly be successfully decannulated. And Dr. Z believed in us, as Timmy's parents, he felt that we knew Timmy better than anyone. And from the signs that Timmy was showing us, he definately was ready to have his trach removed. Thank You Dr. Z for being willing to give Timmy and us this wonderful opportunity to shine and make our everyday lives with Timmy MUCH easier!

Timmy also received his flu shots. Yes, both, the seasonal and the H1N1.  It must have been meant for Timmy to have received the H1N1 injection. I asked Dr. Z his opinion about Timmy getting the flu shots. And Dr. Z said "Yes, Timmy should most definately get them. BUT we are completely out of the H1N1 vaccine. The last dose was given early this morning" We agreed to just go ahead and have Timmy receive the seasonal flu shot. At least, this way he would be half protected. When we met with the Nurse in Pulmonology (Amber) she informed us that they "just" had received a shippment of H1N1 vaccines. Boy talk about Luck and Timing! Sooo, we agreed to have them give Timmy the H1N1 vaccine as well. Floyd spoke with Timmy's Endocrinologist later in the evening and Dr. Ali (Endocrinologist) stated that the hospital had ONLY received 30 doses of the H1N1 vaccine. And Timmy was the 1st person to have received a dose.

So now we wait and see, just how affective these vaccines will be for Timmy.  All of the talk on the news about young children and adults dying from contracting the H1N1 virus scares the Beegeebies out of me! So hopefully, the pain of these 2 injections will protect him throughout this entire flu season.

Home Made Toys

Over the years since Timmy's birth, we have sometimes found it difficult to find toys that Timmy is able to play with independantly and ones which will capture his interest and offer tactile and/or audiotory stimulation. The majority of the toys sold are geared towards babies/young children who can see and/or hear. So we find ourselves, more times than not, having to buy toys that we have to be creative and adapt to make them fun and stimulating for Timmy.

I'm hoping that my NEW category of post "Tuesday's Adapted Toys" and "Adaptive Life" will be helpful to other parents of Deaf/Blind babies and young children. And those familiy members and friends, who sometimes find it difficult to find FUN and STIMULATING toys.

Here are two examples of Homemade toys.

This is a toy that we made for Timmy. It is a ribboned ring holder.

 Items Needed:

1. Different colors and textures of ribbon, cut to at least 12in in length. You can make the ribbon length shorter if desired. The ribbon can be purchased at a craft store or a department store, which sells craft items.

2. A small clear plastic hand towel holder. We removed the hanging hardware. You can use any small diameter ring.

How to Assemble;
1. Fold each piece of ribbon in half.
2. Place the folded piece of ribbon through the center of the hand towel holder.
3. Bring the loose ends of the ribbon up and through the loop end of the ribbon and pull tight. Or you could just tie the ribbon to the hand towel holder.
4. Attach each piece of ribbon seperately.
5. Bring all of the attached ribbon together to one side of the hand towel holder or spread the ribbon all around the hand towel holder.

This Provides A Child With....

1. Visual stimulation with the bright colors of the ribbon.

2. Tactile stimulation from the different textures from the ribbon.

3. Helps the child to be able to learn to grasp an object. The "ring" is small enough for little hands to hold easily.

Even though Timmy can't see the different colors of the ribbon, he is stimulated by the different textures of the ribbon. He likes to rub the ribbons across his cheeks and feel them with his hands. The "ring" is light-weight and easy to grasp and hold. The "ring' is large enough for him to be able to manipulate with both hands at the same time.

This is a texture book, which was made for Timmy by an 7 year old little girl, who was trying to earn one of her Scout Badges. This textured book was given to Timmy by this little girl for Christmas, in 2004.

Items Needed:

1. Different textures of material, cut into 6x6 square pieces.

2. A heavy duty craft sewing needle.

3. Heavy duty thread, yarn, twine or something else to sew the pieces of material together in book form.

How To Assemble:

1. Arrange the pieces of material in the order of texture desired.

2. Lay the pieces of material one atop the other.

4. Sew the material pieces together along one side of the material. Making sure that the seam hold securely.

This Provides A Child With....

1. Visual stimulation from the different colored pieces of material.

2. Tactile stimulation from the different textures of material.

3. Light-weight and easy to grasp and hold. Can be manipulated with both hands at the same time.

Even though Timmy can't see the colors of the materials, he gets tactile stimulation from the different textures of material. He likes to explore each texture by rubbing the book over his face and feeling the material with his hands.

Being that "adapted" toys that are sold online or in catalogs are soooo expensive! Sometimes, it is best to just be creative and make your own simple toys.

Wal-Mart

All of the children that I know LOVE to go shopping. They beg to go to the store so that they can get some candy or a toy. I have even witnessed children having a major melt down in the toy section of a depeatment store, because they were not ready to leave. All of my children LOVE to go shopping, with great expectations of being able to get a toy or some candy. I have seen times, when all I needed was a couple of items from the store and actually had to sneak out of the house just to be able to make a quick dash to the store.

Well, actually all of my children LOVE to go shopping except for Timmy. He HATES to go shopping anywhere. He has some kind of special radar, which seems to alert him that we have just entered a store. As soon as we step inside the doorway, not feet, but merely inches, Timmy goes into a full blown major temper tantrum! Screaming, crying, his face turns beet red, his entire body goes rigid.  It doesn't matter if the store is crowded or almost empty, if we are at a department store, a pharmacy or a grocery store. We have yet to figure out the reason behind this behavior, except for the fact that he HATES to go shopping.

We have tried taking him out of his stroller and carrying him around in the store. At least, this way we felt that if it were a security issue he would feel safe in our arms. Doesn't work. We have tried talking to him and helping him work through the tantrum. Doesn't work, he just gets louder. We have tried taking him into the restroom thinking that being away from the atmosphere of the store and a diaper check might help. Doesn't work. We have walked into the outside garden section of Wal-Mart hoping that this would calm him down and give him the sense that he was once again outside. Even this trick doesn't work. The only thing that will calm him down is for us to COMPLETELY leave the store with him. Immediately upon stepping outside of the store, not by feet, but by mere inches, he stops with the tantrum and gives us this BIG smile and a giggle.

Most of the time Dad or Timmy's Home Health Nurse will take him outside so that the shopping can be completed. Yesterday when we went to Wal-Mart to pick up some party supplies for his upcoming birthday party. You guessed it, Timmy immediately went into his melt down. Timmy's nurse carried him back outside to the car, which left me pushing his stroller around empty in the store. A customer stopped me and pointed out that the baby was no longer in the stroller. Sorry guys, but I just couldn't resist. I replied, while clutching the bag of party supplies that I had just purchased, "Oh, I know. Wal-Mart now has this new trade it plan. Swap any item for food. I just left him over there (pointing towards the toy isle) with the other Cabbage Patch Kids!" The look on the person's face was priceless. I walked away without saying another word.

What can I say, stupid comments sometimes deserve stupid replies.

Visit To The Pumpkin Patch

We took the kids to the park and the Pumpkin Patch today. Emily, of course, ran herself ragged at the park. Timmy, on the other hand, finds the park relaxing and the perfect place to take a nap.

The temperature here today is in the mid 70's. with a slight chance of rain. Not the type of weather that I associate with Fall or Halloween. When I think of Fall or Halloween, I think of cool, crisp days, where the leaves are changing colors and falling from the trees. Where the kids wear sweats and are bundle up in a light jacket when they go out to play. I think of a nice warm fire in the fireplace in the evenings, and sipping hot chocolate.

The warm weather just doesn't set the mood for Halloween for me. In fact, it is a bit depressing. I feel that maybe instead of carving the pumpkins into Jack-O-Lanterns, we should let the kids paint the pumpkins, hide the pumpkins for the kids to find, and maybe even do a pumpkin roll, like an Easter Egg roll. Having lived in the South all of my life, I guess this is one reason that I'm not a big fan of Halloween. It seems that the weather around this time fo year is just to crazy and never cooperates for the season. So for the sake of the kids, I guess we will stick to the tradition of the Halloween Holiday.

At the Pumpkin Patch, we let the kids picks out their own pumpkin. We will carve the pumpkins into Jock-O-Lanterns, let them have fun playing in the pulp and I'll roast pumpkin seeds.

Take a closer look at Emily's socks. I guess in her own young mind she agrees with her MaMa. She is definately ready for cooler weather and a much more fun Holiday!

Look at our little man. He is sitting up all by himself so nicely. It is hard to believe that he has made this much progress in just 1 year!

Adapted Shape Sorter

Nathan's mom over at http://www.prayfornathan.org/, gave me an idea for our blog. THANK YOU Marcela! Occasionally, I will be adding different items that we have bought and adapted for Timmy. I will also be giving my suggestions and opinions on different products that we are using or have used.

Being that Timmy is blind and has a hearing impairment, we try to find toys that will appeal to his sense of touch and which also has some audiotory out for stimulation. Sometimes this can be difficult, especially when these types of "adapted" toys for the special needs child are so expensive. We have to find ways to adapt toys that can be bought at Toys R Us, Wal-Mart or other retail stores.

Here is an example of one of Timmy's toys that we adapted to make it more sensory friendly for him.

This is the Fisher-Price Laugh and Learn Cookie Shape Surprise. It can be purchased from Amazon for $19.99 or somethingsimilar can be purchased from Enabling Devices for $86.95+. The shape sorter has a volume control switch on the bottom. It has 2 modes of play 1. Shape mode 2. Number mode. There is a sensor in the sorter that detects when an item has been added to the "cookie jar." Once an item has been added, there is a motivational short song that is played and the red nose lights up, to encourage children along in play.

                                                                         

We adapted the shape pieces with items  found around the house and attached the items to each shape by using a hot glue gun. As you can see in the above picture there are five different shaped pieces (Star, Heart, Square,Triangle, Circle). We used an old beaded necklace, cotton, piece of crinkly plastic paper, a piece of rubber and a piece of silky material. Other items that could also have been used are; sand paper, a piece of sponge, other textures of material etc... Let your imagination run wild with whatever you can find around the house. Even though the shaped pieces will no longer fit into the aproperate shaped slots, it still can be used by dropping the shapes into the cookie jar through the opening at the top. This is our goal for Timmy, for him to be able to pick up the pieces and drop them into the cookie jar. Being that we used a hot glue gun to attach the items to each of the shapes, they should be easily removable in the future, so that the toy can be played with by placing each shaped piece into its corresponding shaped hole on the cookie jar.

Telling Time

Timmy hasn't been sleeping well lately. We have been trying to figure out why. He has been waking up around 2am and staying awake all day, without even taking a nap. So when bedtimes comes, we know that he is definately tired and sleepy. Bedtime for Timmy is around 9pm. Five hours of sleep, sometimes less, isn't enough for an adult, let alone a growing boy.

Timmy loves birds. He has this bird clock in his room, at the top of each hour the corresponding bird chirps off the hour. For the past few weeks the birds and the corresponding hour have been set wrong. We didn't think anything about the birds not lining up correctly with the correct hour. All that was important to us, was that the clock was set to the proper time. Dottie, one of Timmy's home health nurses pointed out that maybe, just maybe, Timmy isn't sleeping well, because the hour isn't corresponding to the proper bird. That maybe Timmy has gotten use to which bird sounds on the hour in which he is usually woken up and which bird sounds when he is put to bed. And having the wrong bird chirp at the incorrect hour is confusing him and making him think that it is time to wake up. Made sense to me. So Dottie reset the clock so that the correct bird chirps on the correct hour. Would you believe it, Timmy slept very well last night. So we shall see if this was the problem. If so, who says that a blind child, with a brain disorder can't learn to tell time?

The Brave Little Soul

When I look at Timmy I can see a Brave Little Soul. I can imagine him jumping up and down, asking God to send him to Earth so that he can bring Love and Goodness to others.

In Timmy's almost six years of life, he has touched the lives of many and taught others a great deal about life and living.

He has taught me...
-The true meaning of Unconditional Love.
-He has given me the courage and strength to stand up, seek and fight for what I want and believe to be in my or his best interest.
-Compassion - He has shown me that there is others in this world and in my life, that the world and life doesn't just revolve around ME.
-Patience - That through hard work, persistancy and dedication, inchstones can happen and nothing is impossible.
-Empathy -That verbal communication isn't always necessary. That through his award winning smile, his contageous laughter, his cries, and body language, I'm able to experience and understnad his world.
-Creativity. That when an object is out of our reach due to its expense, be creative and adapt something or make our own.

He has taught the OB/GYN's and Perinatologists who overseen my care while I was pregnant, that Miracles CAN and DO happen. To be honest with their patients, but also inform the patient that they have see success stories. And let the patient make their own decisions as to what and how they want to continue with the pregnancy.

He taught his NICU Neonatologist that it is sometimes necessary to think outside the box. That not all medical situations follow what he has learned and experienced throughout his medical practice. The most impartant thing that the Neonatologist learned was that it is posible for a baby to be born with completely blocked nasal passages. Now when a baby first enters into his care the Neonatologist will try passing a feeding tube down each nasal passage to ensure that the nose is open.

Timmy has taught Doctors and Specialists that the Parents know the child better than they. So the care that they provide will be more affective IF they were to take the time to sit and listen to the parents. Address all of the parents concerns. And then offer suggestions, ideas and advice.

He has taught Teachers and Therapists that if realistic goals are set, placed into the right conditions and given the proper materials, along with persistance guidance, EVERY child CAN learn.

Timmy also has brought love, kindness, empathy, and inspiration into the lifes of family members, friends and strangers.

Here is the story of the "Brave Little Soul" I hope that it brings joy, love and inspiration into you life, as well.

"The Brave Little Soul"
- By: John Alessi -

Not too long ago in Heaven there was a little soul who took wonder in observing the world.
He especially enjoyed the love he saw there and often expressed this joy with God.
One day however the little soul was sad, for on this day he saw suffering in the world.
He approached God and sadly asked, "Why do bad things happen?
Why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts."
The little soul was confused. "What do you mean," he asked.
God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued,
"The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied.
"I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you".
God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."

Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

What does she really know?

We went to a Parent-Teacher meeting the other day, at Emily's Preschool, to discuss with Mrs. Maxey, Emily's Pre-K teacher, Emily's beginning of the year test results. All of the children are tested 3 times during the year. The 1st. time is to give the teacher an idea as to what each child already knows and the 2nd and 3rd tests are to record progress.

Emily is currently 51 months old. And she scored within her age range for each section of the test. The shocker to us was her scores in Cognitive and Language. Even though her scores were within her age range, we had thought that she would have scored higher. When we brought up our concerns to Mrs. Maxey, she assured us thaat Emily "could" have most definately have scored higher. BUT on these two particular areas of the test, when Emily was asked a question, she would follow up the question asked to her with her own question or drift off into a casual conversation about something she had experienced in reference to the question being asked or something on a totally different subject.

Even thought these test results aren't a "completely true" picture as to what each child knows, they do give the teacher a good idea. The test results may vary because the child may have been pulled away from an activity that they were enjoying or the child may be more focused on an upcoming activity of the day that the teacher has planned or the child may be sick or tired. Emily's problem is that she gets distracted very easily and LOVES to talk about things that she knows about or has experienced. She is also a VERY inquisitive child. We were given a print out of activities that we can work with Emily on to help strengthen her emerging skills.

The Lemonade Award

Carly from www.carlyandjay.wordpress.com nominated me to receive the Lemonade Award. Thank You Carly!! I have to admit, I feel flattered to have received this nomination. When I started this blog, it was my hope and intention to have a place where I could offer information, inspiration and support to others. I really enjoy writing on our blog, but I feel that there must be more that I could offer to others that would be helpful as well as interesting. So if anyone would like to drop me some suggestions or ideas as to what you would like to see on our blog, feel free to do so.

What is the Lemonade Award?
A Lemonade Award is given to bloggers who show a positive attitude, gratitude, and a willingness to share their ideas, support and online friendship. Another words, When life hands you lemons, you make lemonade and share the wealth.

Here are the rules of the award:
- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they received this award by commenting on their blog.
- link to the person from whom you received this award.

Here ae my nominations, but not in any particular order:
1. http://anewkindofperfect.blogspot.com/
2. http://danieljohnmaxwellspranger.blogspot.com/
3. http://www.gavinowens.com/
4. http://iveysirmans.blogspot.com/
5. http://www.myspecialks.com/
6. http://littlewonders-heather.blogspot.com/
7. http://thetenderscribe.blogspot.com/
8. http://lovethatmax.blogspot.com/
9. http://theashleykids.blogspot.com/
10. http://www.cartermcates.com/

Enjoy the reading and the new friendships.

Woman Born With Half A Brain Stuns Doctors

This definately proves that the brain is an amazingly wonderful organ. Maybe just maybe, one day Timmy will be featured in his own similar news story.

Embedded video from CNN Video

Fire Safety Week

This week is fire safety and prevention week. Our local fire departments take some time out of their busy schedules each day to visit the Pre-K and Elementary Schools in the area. Today the firemen came to visit Emily's Pre-K school. Unfortunately, I was not told in advance that the firemen would be visiting, so I wasn't able to get any pictures of Emily at school with the firemen, fire truck and the fire dog. But I did take the opportunity to snap a couple of cute pictures of her when she got home.

Mom: Can you tell me what you learned about fire safety today.

Emily; Yes, I learned I want to be an astronaut instead. Being a fire fighter is hard.

Mom: So what do astronauts do?

Emily: They go to out space.

Mom: Don't you think that being an astronaut would also be hard work?

Emily: Noooo silly. All they do is fly.

Mom: Wouldn't learning to fly be hard work?

Emily: Noooooo, birds do it all daaaay.

Saturday At The Park

I was hoping to be able to get these posted sooner, but we all have been taking turns with a yucky 72 hour virus of some sort. My turn happened to be Saturday evening through Tuesday. Timmy's turn also happened to be the same time as mine. How lucky we were to have been sick together.

We have found the cure to Emily's hyperactivity. Just take her to the park for 2 hours and let her run wild! She took a 2 hour nap upon our arrival back home.

As you can see, Mr. Timmy LOVES to swing while the warm sunshine hits him in the face. I too LOVE the warm sunshine. I think we both will choose to come back as cats in our next life.

We all had forgotten that this past weekend was River Fest and that each year there is a horse show at the park. Luckily, Coastal Therapy Riding was there and we were able to get info. We are seriously considering signing Timmy up for therapy riding sessions. These sessions would greatly help Timmy with his balance, help him to be more aware of his body in space and possibly help with his head positioning in conjunction with balance.

We took the kids to feed the ducks and geese at the park. I really wanted to take Timmy out of his stroller so that he could help feed the ducks, but as you can see the ducks and geese out numbered us greatly. So I felt that Timmy was safer in his stroller and just listening to the ducks.

Timmy was assigned the most important job of all, Bread Distributor. Someone had to be incharge or else Emily would have just feed all of the bread to the ducks at once.

Why is it that ducks and geese always act as though they are starving, even after they have been fed? We had to sneak away as Emily explained it, so that we didn't get tacked.

Notice how she is dressed? An everyday dress, shorts, socks and sneakers. I swear I didn't dress her. I was able to get her to come to a compromise. To wear the shorts under her dress, which she insisted that she HAD to wear to look bootiful. This picture was taken almost 2 hours after her running and playing in the hot sun. She's tired, can't you tell? I guess the pumkin patch will had to wait til another day.