Cool Dude...

We have been frantically searching for a "good" pair of non-jprescription sunglasses for Nate. Ones that are baby friendly and comfortable to wear. We finally found some that we like, that were pretty inexpensive. Baby Banz, http://www.babybanz.com/ had what we were looking for. The sunglasses have a nylon strap with velcro adjustment.  We only paid $29 this includes shipping. The thing that I didn't like about having to order from Baby Banz is that they only carry 2 colors, pink and blue. Amazon had many more color choices, but they were currently out of stock. And we needed something quick.

Nate's sunglasses arrived via USPS on Friday afternoon. Being that the weather was nice on Saturday we were able to go for a walk. It was sooo nice to be able to walk with Nate and him be able to open his eyes, look around and observe the world around him. Nate's eyes are very sensitive to light. In the past when we have gone on walks he has had to keep his eyes shut and this frustrated him.

Look out world, there is a COOL DUDE in town!

"I had much rather have a Harley and a Leather Jacket. But swinging is FUN!"

"Oh come one Timmy, Mommy says you have to share." This was Nate's 1st time outside having a turn in the swing. Judge for yourself whether he liked it or not.

Isn't he just the cutest???

Feeding Tube Awareness

                                             
 February 6-12, is Feeding Tube Awareness Week.

http://www.feedingtubeawareness.com/

This website was created by parents for parents, other family members, friends and strangers, to educate and to bring awareness. The website has good information, resources, family stories and practical tips and other general information of interest. Check it out.

                                                         

There are a lot of misconceptions about feedding tubes. I would like to take the time to share our experience.

Timmy has had his feeding tube for 4 years. His tube was placed after his 2nd hospitalization with pneumonia. The doctors suspected that the pneumonia was due to Timmy aspirating. A swallow study showed no aspiration. We opted to go ahead with the feeding tube placement. We felt that it would be beneficial in the treatment of Timmy's diabetes and to administer medications.

The decision to have the feeding tube placed wasn't an easy one for us. At the time, we were so overwhelmed with the day to day care of Timmy's other complex medical needs. We felt that by having the feeding tube, we would only be adding more stress to our lives. In the end the pros outweighed the cons.

At first, we too had a lot of misconceptions. After speaking with Timmy's Gastro-Intestinal Doctor and other families who have children who have a feeding tube our fears and misconceptions we put to ease.

*We like to do a lot of travelling. We thought that by Timmy having a feeding tube we would be restricted as to where or how far we could go from home. Actually by Timmy having a feeding tube, we have opened up more travel possibilities. And travelling with Timmy is a lot easier. We don't have to worry about trying to find a resturant which has soft foods of the consistancy that Timmy can eat. We can give Timmy formula via his feeding tube over a 15-20 minutes and off we go. He has been feed. No worries.

*We had heard that "most" children who have feeding tubes, their feeding tube stomas stay infected all of the ime. In our case this isn't true. Over the past 4 years, Timmy's feeding tube stoma has never been infected. As long as the stoma is kept clean and dry, this cuts way down on the risk of an infection. We also apply a protective barrier cream (Nystatin or Bactroban) twice daily, which has helped.

*Some people are under the impression that those with feeding tubes can not eat orally. In our case, Timmy can and does eat and drink orally. Timmy's feeding tube was primarily placed to administer daily medications, to help us better manage Timmy's diabetes and to help keep him hydrated when he is sick and refuses to eat/drink. There are some children who can not eat/drink orally. The list of reasons are long, but a few examples may include, possibility of aspiration, cleft lip/palate, lack of muscle tone in the neck/face oral sensory issues.

*Some people are under the impression that a child who has a feeding tube can not take a bath or go swimming. This isn't true. Timmy takes a bath every night. He has been swimming many times and even to the beach. As long as the feeding tubes balloon is properly inflated, which creates a seal around the feeding tube stoma, no water can get into the body.

*A child who has a feeding tube can have "tummy" time on the floor to play. Timmy loves to lay on the floor and he has never complained about the feeding tube hurting his stomach. We have not noticed any redness or bruising after Timmy has spent a while playing on the floor on his stomach.

If a child has reflux, the child's gastro-intestinal Doctor may suggest when placing the feeding tube that a Nissen Fundoplacation be preformed as well. This is a procedure in which the bottom portion of the esophagus and the top portion of the stomach are "tied" off to prevent food from re-entering the esophagus from the stomach. (acid reflux)

Some parents have stated that if they feed their child too fast via the feeding tube, this causes the child's reflux to become worse. We have noticed this as well with Timmy. When we feed Timmy via his feeding tube, if we feed him over 15-20 minutes, this reduces his reflux. Timmy also had a Nissen Fundoplacation when he had his feeding tube placed, but we think that the Nissen is failing and needs to be revised. In some medically complex children, having to have the Nissen Fundoplacation revised is a possibility. The revision is a surgical procedure, which may require the child to have to be hospitalized for a few days following the surgery.

Help spread the word to bring awareness and to educate. So that those who have feeding tubes can one day be treated as an equal part in society.

Deaf-Blind Conference 2010

We attended the Deaf-Blind conference in Greensboro, N.C. this year. Very interesting and a lot of fun....

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.

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.