Thomas Marshall Does It All

New iPad and App page!

noreply@blogger.com (Jessica) — Mon, 27 Feb 2012 00:08:00 +0000

I added a new page - iPad & App Info. A lot of people check Tom's blog for information about how blind children are using the iPad. I seem to be one of the few bloggers talking about that specifically.

Now that Tom is getting a little older he is using the iPad more and getting more out of it. It is really exciting to see him use the iPad to work on learning the alphabet with Dr. Seuss' ABC's and watch him genuinely enjoy himself. Because at two and a half learning should be absolutely encased in play and fun. Children Tom's age are not developmentally ready to sit down and learn like older kids. You can learn a lot from play and we intend to.

I will use the iPad & App Info page to keep all the main app reviews and general information but I will continue to write specifically about Tom's experiences in posts.

Updated Links Page & A Story Told in Pictures

noreply@blogger.com (Jessica) — Wed, 22 Feb 2012 05:11:00 +0000

I updated the Links page with more great resources. How I wish I had know about these resources when I first found out Thomas was blind! It would have been such a help. Please check it out.

Now the fun stuff...

My poor husband never gets to play the guitar when Thomas is around. As soon as Tom hears the guitar he comes running over for a turn. Not every little boy is lucky enough to be allowed to play electric guitar any time he wants. Now if only his Dad could get some time to play!

At first he was just playing in the living room.

Then he heard something that stopped him cold.

"I've got to get that!" Tom thought.

Almost there...

Found you!

My turn to jam!

We need some fun!

noreply@blogger.com (Jessica) — Sun, 19 Feb 2012 23:54:00 +0000

I keep telling everyone that Tom loves to dance. Tom likes to jam to "The Laurie Berkner Bank," and "Casper Babypants." Here's the proof!

And we have done some more O&M at the mall. He can walk pretty far on those short little legs. His therapist makes us walk all around and we practice him walking towards my voice. He does a little trailing with his hands and then some work with the cane. He is already starting to do better with the cane. It will just take time.

I can't wait until it warms up enough to use his cane outside. The snow makes it pretty hard for a new cane user and it's too cold to stay outside long. Once it gets a little nicer I want to try using cane training at the park. Then he will see how useful a cane can be on outside terrain.

Did you forget about this guy?

noreply@blogger.com (Jessica) — Fri, 17 Feb 2012 01:37:00 +0000

I didn't forget about him!

"Aiden" age 5

Aiden is still waiting for a family to come and claim him. Every day he sits in his crib and passes the time. He gets fed and changed but that's about it. His family gave him up because he is blind; either they could not care for him or they did not want to.

It breaks my heart to know a child with so much potential is just existing - not living- not learning- just existing because that's all there is for him. There is no therapy and the caretakers at the orphanage have too many children to give him the attention he needs to blossom. He needs a family!

I am not asking you to adopt him, though that would be wonderful. Please consider donating to help finance his adoption. Through Reece's Rainbow, an advocacy and adoption grant/fundraising organization, you can donate to a grant that will be used to help a family adopt him. It is expensive and can take several trips abroad to adopt a child who is not from the United States. This organization helps children with Down Syndrome and other special needs find families. Reece's Rainbow was recently featured on ABC News.

I know. We have orphans here in the United States, but our system, while not perfect, is much better than what is available in Aiden's country. His country simply does not have the resources to care for children with special needs and children suffer because of it. At a certain age, young orphans with special needs are placed into adult mental institutions to live out their days. I cannot think of anything more sad than this.

The last time I posted about Aiden his grant grew by over $600! I am hoping that we can give him an even bigger jump this time. I want a family to take a look at his picture and fall in love with him. Then I want them to see his grant and say, maybe we could bring this boy home?

Just this week I donated $40.00 to Aiden. Every little bit helps. I hope you will help him too. You can click here to read his bio and donate to his adoption grant fund.

“I am only one, but I am one. I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do the something that I can do."

-Edward Everett Hale

You may wonder how I found out about Aiden. As the writer of this blog, I can see certain demographics like which websites are linking to my blog. I saw that a blog called "Just ONE more 4 us!!? had linked to my blog and I wondered why. Usually it's because a family has a blind child or someone teaches blind children but this blog was about a family that was trying to adopt a young blind child from an orphanage in Eastern Europe.

I started reading more and more about this family and about the children available for adoption. That's how I found "Aiden." The writer of "Just ONE more 4 us!?" recently posted about him again here. I swear, once you read the stories of the families that are bringing these children home you will never be the same.

Tube Free by Age Three?

noreply@blogger.com (Jessica) — Tue, 14 Feb 2012 03:22:00 +0000

Age 3? I better get to work!!!

That's my new mantra- TUBE FREE BY AGE THREE! And I really think it's possible.

Today at therapy, Thomas ate just over two ounces of applesauce. This is a measurable amount of food and it's a huge hurtle. It's a real beginning. I can't tell you how excited I am. It took us so long to find out that Tom didn't have adequate oral motor skills. For months and months we suffered in ignorance and I beat my head against the wall. I thought I just needed to keep trying different foods and that one day he would magically like one and begin to eat. Ha! Ridiculous. That's not the way it works. It wasn't that he didn't want to eat. He didn't know how!

His mouth didn't know what to do with food. When he tried to eat it he used to gag and often threw up. Eating is actually a learned activity. Your tongue needs to move in certain ways to get the food to the sides of your mouth so it can be chewed and then move it back to be swallowed. Tom's tongue only used to go back and forth. Now when he eats I can see it moving sideways too! The Children's Institute of Pittsburgh is a magical place. The therapy he gets there is really what has helped him develop the skills necessary to eat by mouth.

And coincidentally, with these new tongue skills have come eating breakthroughs. He is chewing and swallowing cheese puffs like it's no big deal. He ate four of them for his occupational therapist last Friday! And this past Saturday, Tommy ate an entire portion of baby food for his Dad and I. You don't know how many times I have put baby food into a bowl only to have one or two bites eaten. To actually finish a plate of food is amazing progress.

No more chips until he gets more practice!

Now we have to work on these new oral skills every day! And we have to be very careful because now he knows just enough to be dangerous. He will still be working on eating purees, soups and meltable crunchies like cheese puffs. The last thing we want is for him to choke on some food and get scared. That could send him back into being on the defensive with food again. So we are going to take it nice and slow and build on these new skills.

A Fearless Explorer

noreply@blogger.com (Jessica) — Fri, 10 Feb 2012 04:07:00 +0000

Our cats are truly scared because now there is nowhere to hide from Tom. One of the cats was sitting on top of the cable box inside of our television cabinet when Tom came crawling in. He didn't seem bothered at all by the small quarters.

Here's he's thinking, "Hmm, this box is kind of warm, maybe I should sit on it too?" All kidding aside, I love that he is just getting into everything. Thank god the kitty litter is in the basement or he would be crawling around in that! Just tonight he was in the kitchen and started to complain. I came to see what was wrong and found him with a soaking wet foot and pant leg. He had been splashing through the cat dish again! It's a good thing those cats like him because he is all over their stuff.

And he's out! On to his next adventure.

But don't worry. Those cats get some very cuddly benefits from having Tom in their house too.

Looks cozy, right? There are two cats in there.

Spaghetti!

noreply@blogger.com (Jessica) — Wed, 08 Feb 2012 18:45:00 +0000

Tom has an unexpected interest in spaghetti! I never really thought to try these noodles but he loves them. We had dinner at one of Tom's grandparents' house last Saturday so we put Tom in a high chair along with us and let him try a bunch of foods. He went right to work on the Spaghetti.

I thought he would mostly just touch it because it is an interesting texture. I never thought he would really try to eat it! But it's probably good exercise for his mouth and for his hands (fine motor skills.)

He also took several small bites of strawberry and tastes of buttered bread. So we took some leftover spaghetti home with us and tried it several more times. These pictures are from home. Look at him go!

It's cool to see him eating individual noodles instead of just mashing a big handful into his mouth. He was taking careful little bites and we reminded him to CHEW, CHEW, CHEW! He didn't choke or gag once! He is still only ingesting only tiny amounts of food by mouth but his interest and the amount of time he will spend trying to eat is getting better all the time.

Maybe someday soon Tom won't need his g-tube anymore. Did you know it's FEEDING TUBE AWARENESS WEEK this week? I sure love my little tubie.

Answering your questions

noreply@blogger.com (Jessica) — Sun, 05 Feb 2012 05:17:00 +0000

It was 52 degrees on Wednesday so we went to the park!

I got lots of great comments and questions in response to the "De-Lurking" day post. Your comments really do keep me going. I love seeing "unmoderated comment" pop up in bold letters! It lets me know that I'm focusing on things that interest you and that I am providing valuable information to other parents and friends.

Why does Tommy wear contacts? Does he have some vision?

During the vitrectomy surgeries Tom had when he was very small, he had to have his own lenses removed from his eye so they could do the work they needed to do. His own lenses were abnormal anyway. Without your own lenses you are "aphakic" and usually wear special contacts like Tom does to allow the eye some ability to focus.

When Tom was first born he barely opened his eyes. After he has his first vitrectomy at two-weeks-old he began opening his eyes more. But without lenses his eyes just sort of rolled around and never really fixed on anything. When Tom was four months old he got his first contact lens and his eye was like BAM! Straight ahead, no more rolling! That's how we knew they were doing something for him.

Contacts are in!

Tom has the ability to see light and darkness. He will turn to light sources like a flashlight if you shine it near his eyes. Even his left eye, which is much more damaged than his right, responds to light.

So does he have some vision... Well, we think so. You can do a lot with just the ability to see light. It can tell you where doors, doorways and windows are that can act as navigational landmarks. He moves with such confidence in our house but a lot of that is memory. What is impressive is when we go to a new home and he navigates around large obstacles like a large kitchen island and finds hallways with ease.

When his contacts are in he keeps his head up more and his eyes open. There were times when it was just impossible for me to get good pictures of him. But now that his glaucoma is under control and he contacts are in he keeps his eyes open. That makes me think he is getting some useful information from his eyes and that's enough for me!

How did we get services for Tommy?

MEDICAL- It all started in the hospital when he was born. Tom caused a stir when he was born and while I hated the whirlwind of doctors and specialists that were coming at us from all angles then, they also got the ball rolling for us. It set things into motion that would have taken me months to find myself.

I left the hospital and went right to the Children's Hospital of Pittsburgh to see Dr. Lope, who is still our pediatric ophthalmologist today. She sent us to Dr. Olsen, a retinal surgeon here in Pittsburgh, when Tom was just five-days-old. Dr. Olsen sent us to Dr. Capone in Michigan because he thought Dr. Capone had the best chance of helping Tommy. We still see all those doctors and they have been instrumental in getting Tom where he is today. We were very lucky to find great doctors right away.

The other part of the story is THERAPY! When we left the hospital after I had Tommy we had many doctors appointments already scheduled. We had also been set up to have an evaluation with our local Early Intervention provider. Early Intervention is a program for children, ages birth to three, who are not meeting their developmental goals. Without vision, everyone knew that Tommy would have difficulty reaching these goals on time and knew he would need these services.

He started with only vision therapy once a week with a very sweet woman. She snuggled my little man and got right up in his face with black and white toys and noisy little shakers. She helped me keep him stimulated and interested in the world around him. She showed me how to use a boppy pillow to bolster him up so for tummy time like this.

Tummy time on the boppy.

Then, on the advice of our pediatrician and neurologist, we asked for physical therapy (PT) for Tommy because of his hypertone. Tommy was born with very tight muscles. We just thought he was a crazy strong baby but it was actually a medical condition. Through weekly physical therapy we have seen lots of improvements.

When Tommy was born he couldn't raise his arms up the whole way because his muscles were too tight. Now he has full range of motion in his arms! Hypertone doesn't go away; it's the way his brain communicates with his muscles. It sure isn't slowing him down now, though.

We added occupational therapy (OT) when Tom was refusing his bottle and not showing any interest in eating solid food at about seven months old. This has helped with everything. Basically, PT is work with big muscles like walking and climbing and OT is little muscles like fine motor skills and oral skills. His OT seems to work on a little bit of everything and I think it sort of helps with everything. He adores her and she gets a lot of work out of him.

Eating with Dad.

When Tommy's weight was low they added a nutritionist to our services. She became even more important when Tom got his g-tube. We tried many formulas until we found one he could tolerate. Our nutritionist had lots of connections with formula reps who gave us free samples to try until we found a formula that worked. That was awesome. She encouraged me to give Tom green tea and probiotics for his stomach. They helped a lot! We still use green tea to flush Tom's g-tube instead of water.

When Tom turned two he still wasn't talking very much so I asked for speech services from Early Intervention. He is improving. He comes alive with music so we are using song to get him to speak. Someday our house will be like a musical!

At feeding therapy

Tom still wasn't progressing with his eating so I sought out a second feeding evaluation; this time at the Children's Institute of Pittsburgh. Now Tommy gets one hour of oral motor/feeding therapy with a speech language pathologist and one hour with an occupational therapist at the Children's Institute of Pittsburgh.

Are you counting? That's 6 therapy sessions a week with two additional nutrition sessions per month. So we are busy, but it's all helping. I have learned so much from his therapists. I can't believe I have to give them up when Tommy turns three:( At age three your school district takes over and provides your services in Pennsylvania.

How to get therapy? ASK! And then ask again. Ask your early intervention program coordinator if you think your child needs additional therapy. Ask your pediatrician for a referral to Early Intervention or call your local Early Intervention directly.

I got no results from our first feeding evaluation so I got another from somewhere else. You have to be thorough and just keep looking for new options. We are lucky to live in Pittsburgh because there are tons of excellent hospitals and specialists here.

My advice is to read all the newsletters and emails you get from the organizations that service your child. Ask if they have play groups or story hours. You never know what programs are out there. Start asking and start checking websites. Most organizations are on Facebook. Friend them on Facebook and you can find out about their programs as new things become available.

What is harder? Blindness or the other medical issues?

That is a hard one. We were so excited to be parents when Tommy was born. We had no idea he had any medical issues and were completely unprepared. We just wanted to be happy and enjoy our new baby, but we were scared. Really scared.

Tommy after his first vitrectomy surgery.

I remember that a pediatrician came to see me when we were still in the hospital after I gave birth to Tom. She was sent by our regular pediatrician to check on us. I must have been a pitiful sight. She found me alone in my room, pumping to get my milk started and crying. She hugged me and asked if my mother was in town and if I had family close by. I said I did. Then she said something very important. I can't remember it exactly, but she basically said, "I know things seem awful now, but remember, your baby is going home with you. Not everyone is that lucky."

It's true. If you only focus on what's wrong you will never be able to enjoy what is right. We had a healthy baby, he was just a little different. We tried very hard to enjoy our baby instead of focusing on all the surgeries and doctor appointments we had.

I would say that the blindness was the hardest at first because it was the cause of all those surgeries. Now we are adjusted to his blindness; it's really no big deal anymore. He is just like other kids. He dances to music and climbs the stairs. He can go all around the house and find what he is looking for. He just trails the walls and off he goes. His mobility is impressive.

The other things...
Food and sleep were his other things. Tom started refusing food at about five months of age. It got worse and soon he was no longer on the growth charts and we were scared. I struggled to get every ounce of food into him. It was awful and I didn't understand what was wrong or how to help him. And then I felt like a failure as a mother cause I couldn't even get my child to eat. It was a very low point for me.

Tom was hospitalized several times for dehydration/food refusal that first summer of his life. We didn't go anywhere that summer because he was never well hydrated. We realized he needed a feeding tube so we agreed to have a g-tube inserted at his next eye evaluation under anesthesia. He got his tube just about two weeks before his first birthday.

It was a massive relief to know he was properly fed and hydrated. He gained weight and grew well. But now the old solution became our new problem. Here it is, a year and a half later, and he still has the tube. But we are finally seeing some progress after lots of feeding therapy. Tonight he enjoyed some spaghetti, fried eggplant and strawberries! His interest in food and the length in which he will attempt to eat has grown so much. We are finally getting somewhere.

And Tom never slept well. As a baby, Tom used to wake up when my head hit the pillow. It was like he knew! I spent many night sleeping propped up between pillows with him in the crook of my arm. When we tried sleep training he cried until he threw up. Eventually we tried melatonin and it helped him fall asleep at a normal time. I no longer party like a rock star until 2:00 am with Tom. We go to sleep around 10:00 or 11:00 most nights. I am no longer a creature of the night. Personally, I think he needed some time without surgeries to grow and develop before he could work on sleeping without me. And that melatonin is liquid magic.

So basically, I had a baby that couldn't see, had very stiff muscles, wouldn't eat and wouldn't sleep. For a long time I just survived and tried the best I could. I am being totally honest here. I hope I don't come off like I have all the answers because I don't. I am just trying my best and learning as I go.

I knew no one with a child with special needs when I had Tom. I knew no one with a blind child or a child that wouldn't eat. I felt very alone. That's part of the reason I started this blog. I wanted people to know that Tom is more than his diagnoses. He is an amazing little man and he has come a long way. We both have.

He is resilient!

He is happy!

O&M at the Mall

noreply@blogger.com (Jessica) — Thu, 02 Feb 2012 03:40:00 +0000

He looks thrilled.

Tom has vision therapy twice a week through Early Intervention services. We have a great vision therapist that does O&M (orientation and mobility) and pre-braille work. He is learning a lot and we are trying to squeeze as much knowledge and experience out of this opportunity as we can.

Last week we started O&M training at the Mall. The mall is fairly quiet during the day and it is filled with long hallways. It is a safe and climate controlled space to practice orientation and mobility skills. It's realistic because you can use side hallways that are quieter and then move on to the busier areas as the child's skill and confidence grow.

We started by having Tom and his teacher in one spot and me a couple meters away. I would call to Thomas and he would walk to my voice while trailing the wall with his hand. He also walks with his "bumpers up." You teach young children to walk with their hands up (bumpers up) in front of them so they don't run into objects face first. Tom is excellent at trailing. It just seems natural to him to feel whatever he can when in new environments.

Trailing with his hands.

We also started to use his cane during this therapy session. I have been wanting to teach Tommy to use a white cane for a while. The more blind your child is the more they need a white cane. And if your child can only see large objects then they need a cane too. Forget about looking blind - they are blind! And that is OK! The important thing is safety and independence. What do you see when you see a blind person being led by sighted guide? Passive, not in control. What do you see when a blind person is using a white cane. Independence, action!

Now of course, there are times when sighted guide is an appropriate way for blind people to travel. But I don't want that to be what Tom relies on. I want him to be in control of his destiny.

Let's go!

Tom uses a free white cane provided to us by the NFB (National Federation of the Blind). Think about signing up for the NFB's Early Explorer program. Early Explorers is a free program intended to introduce children and their parents to the long white cane. It offers you the tools to be your child's first O&M teacher, including educational information, newsletters, and a cane for your child. When you sign up for the program you measure your child so the proper size cane can be sent to you.

You will probably notice that Tom isn't smiling in these pictures. That's because this is very hard work for him. He is completely out of his comfort zone. But these are the skills he needs and before long he will we will be telling him to slow down and wait for us.

It wasn't all work. He did get to ride those silly machines at the mall that play music and move around for 75 cents as a treat!

Eating...by mouth and tube

noreply@blogger.com (Jessica) — Wed, 01 Feb 2012 21:23:00 +0000

Tub time - showing off his tube. (Bathroom was being renovated:)

Tom is almost 100% g-tube fed and has been for almost a year and a half. We have tried and tried to get him to eat by mouth. After two different evaluations we finally learned that he didn't have the oral skills necessary to eat. His mouth simply didn't know what to do with the food once it was in his mouth. This led to panic and choking and then more oral aversions. It was an ugly cycle until we learned that he needed to build his oral skills to eat. We were relieved to have some answers and a plan!

Back to Basics - Purees
Now we have been trying just the tiniest baby steps. We no longer let him mouth hard food because he has to go back to the beginning with purees. He has to learn all the stuff he was too sick to learn when he was young.

Body Movement effects Mouth Movement
This may sound sort of crazy but mouth movement and body movement are connected. Tom has two, one hour Occupational Therapy appointments a week. One session is through Early Intervention and one session at the Children's Institute of Pittsburgh that is covered by our insurance. They both push Tom out of his comfort zone by having him participate in every day tasks and physical movement.

His therapists noted that Tom prefers to move up and down but not side to side. Your tongue needs to move side to side for you to eat. So they spend a lot of time getting Tom to move his body in new ways. The theory is that as the body learns to move in new ways so will the tongue. Interesting, right? Click here for an good article on oral motor therapy.

Swing Therapy
Tom is crazy about swinging! So to get Tom to eat we have feeding therapy in a swing. If he takes a bite then he gets a couple pushes on the swing. And it is working! Or we put him in a high chair and use a musical toy as a motivator. If he takes a bite then he gets to hit the button and listen to music.

And do you know what happened this week? Tommy took a bite of a cheese puff (the therapists call them meltable crunchies), and he chewed and swallowed it! It was pure magic to see. And he ate the whole cheese puff in several bites, chews and swallows. I could not believe it. It gives me real hope that we are on the right track. I loved seeing him enjoy food and eat without fear.

Success!

Tons more work ahead of us but we are finally seeing some results. I still can't believe he ate something. Of course I'm all teary and he acts like he does it every day!

De-lurking day!

noreply@blogger.com (Jessica) — Fri, 27 Jan 2012 23:12:00 +0000

You know all about Tommy from reading this blog. Now we want to know a little bit about you?

His thoughtful face. Who is reading my blog?

I get so many readers but I only have 41 followers. I am curious about the readers of Tom's blog so I am putting some questions out there for you. Please leave me a comment and tell me a little about your self and answer any or all of these questions...

Why do you read Thomas Marshall Does It All?

Are you blind? Do you have blind children?

How did you find our blog?

Where are you from? We get some great international traffic on this site.

Do you have any questions for us? Are there any topics you want me to write about?

Most of all I want to thank you for reading Thomas Marshall Does It All! Thanks for all the helpful and supportive comments. I really appreciate every one.

Random happy dance shot!

Medical Bills and Insurance Confusion

noreply@blogger.com (Jessica) — Thu, 26 Jan 2012 04:10:00 +0000

How could you deny this guy anything?

If you child has complex medical issues then you probably have your insurance company listed as a contact on your phone. You probably speak to them more than you speak with some of your relatives.

We live in Pennsylvania but we went to Detroit Michigan for Tommy's retinal surgeries and have had several EUA's* there too. In the world of insurance that is called going out-of-network. And it's a big, big deal. Once you go out-of-network all bets are off and insurance payments and coverage gets tricky.

Since you are out-of-state all the insurance rules are different and your insurance company likely does not have a contract with the hospital or facility. That means their providers (the doctors) are not participating providers with your insurance either. This often results in you getting stuck with the bill for very expensive procedures.

This silly guy is worth all the work!

What can you do?
Well right from the beginning Tommy's situation was very rare and attracted a lot of attention from a team of doctors. They knew that he would need surgery and that he had to go out-of-state for the best chance at a good surgical outcome. So our retinal surgeon in Pittsburgh immediately wrote a letter to our insurance company (our primary insurance - from my husband's work). Our pediatrician also wrote a letter to our insurance company explaining Tom's medical need.

After receiving this information our insurance company granted us authorization to go out-of-network for the surgery. However, an authorization is just a preliminary OK; it is not a guarantee of payment. And your insurance company will only pay the "usual and customary amount" which will be nowhere near the actual billed amount. The numbers on those bills will make your head spin!

Then it's time for the secondary insurance to kick in! We are lucky enough to have Medicaid as a secondary insurance because in Pennsylvania they waive the monetary qualifications and allow him to qualify because his medical conditions mark him as disabled. Pennsylvania is one of only a few, so called, Medicaid waiver states. I don't even like to think about where we would be without this secondary coverage.

When Thomas has medical services in Pennsylvania we are covered 100% through both of our insurances, even for prescriptions. This has been a blessing because glaucoma drops are very expensive. A tiny bottle that you go through in a month costs $120.00 and we are on two prescriptions! And then we have Tom's g-tube supplies...I don't even know how much those cost. Plus his contact lenses...

Bills, Bills, Bills
I have been on the phone for hours this week trying to decipher bills that we have been receiving from Tom's care in Michigan. One bill is from September 2011, and one is from spring of 2010! I could see on both bills that our secondary insurance was not billed. When I asked one billing office they said they tried 3 times to bill our secondary but they were denied. When I called our secondary insurance they said they never got the bill so how could they have denied it!

After endless calls back and forth it we believe that one bill will be resubmitted to our secondary insurance. Since the date of service is very old (there are rules about timely billing) it will be denied and then I will have to file an appeal. Some very lovely customer rep at my secondary insurance has offered to help me file the appeal since she has been working on resolving these billing issues with me. She has been a godsend. Sometimes you get help just when you need it!

The other bill is for anesthesia services from September 2011. They never even attempted to bill our secondary insurance because it is an out-of-state Medicaid! She came right out and told me that on a recorded line! Basically, they know that they have no contract with PA Medicaid and that the bill won't be paid anyway so instead they tried to bill me. Well I don't make the rules and I'm not going to pay that bill just because they don't want to bill correctly!

This hospital has a lot of out-of-state and international patients because this is the place to go for infant retinal surgery. They could fill out the paperwork to become participating providers so they could bill but evidently they have not.

I used to work in hospital billing about a billion years ago and I know that is routinely done. The hospital I worked for had agreements with Medicaid for several neighboring states. I also know that in these cases they usually just write off the service because it's a lot of hassle for not much revenue. But I think that often times they bill families and just see who will try to pay the bill. It's not right and it adds so much stress to families that are already struggling with so much. And think of all the people that don't have the time or the know how to fight these bills!

These bills are so big it is laughable!

Oh well. The fight continues because there will be more procedures and more bills. In these recent struggles we had two very wonderful people help us out. One was the customer rep at our secondary insurance and one was an incredibly helpful pharmacist.

Our pharmacist advocated for us with our primary insurance when they denied us a refill of one of Tom's glaucoma eye drops recently. Our primary insurance suddenly thought that a 30 days supply should last 45 days and wouldn't give us a refill. Giving eye drops to a toddler is not like giving eye drops to an adult! Sometimes you miss on a squirmy little guy or he wipes it away so you give him one more. Our pharmacist told the insurance company, "You realize these drops are for a toddler, right?"

Of course, if his pressure goes up that means an EUA and possible surgery which costs a hell of a lot more than drops! Penny wise and pound foolish as the saying goes... But we got the drops at no cost. I don't even know how but the pharmacist just said come pick them up, I'll take care of it. How wonderful is that? I want to thank him but I also don't want to get him in trouble so I think I will just write him a little thank you note.

So that's where we are right now. We are still fighting these insurance battles but we are very lucky to have excellent coverage. I don't know where we would be without it.

*EUA = exam under anesthesia

Tom won a free book!

noreply@blogger.com (Jessica) — Sat, 21 Jan 2012 22:24:00 +0000

I won!

Tom won a free book from Beulah Reimer Legacy (BRL) in their Louis Braille Birthday drawing! I have posted about BRL before. They are a great source of braille books for children and ship Free Matter for the Blind.

BRL has a great selection of books. You can find Clifford, Elmo, Dora, and just about any other book you child may want. While the big braille books we get from our vision therapists are great, it's also nice to have the same books other kids are reading available in braille.

We chose a classic for our free book - Green Eggs and Ham by Dr. Seuss.

More Great iPad Apps for Blind Children

noreply@blogger.com (Jessica) — Thu, 19 Jan 2012 04:46:00 +0000

Just wanted to feature some more great apps on here for everyone. These are apps that we are currently using. Please leave me a comment if you have any apps you would like to share.

Music Apps

D-Volution Percussions
This app allows you to choose from an array of percussion instruments to create lots of interesting sounds.

Drum Kit XL
This app is great in its simplicity. You have the image of a drum kit on the screen - start drumming!

Visually Stimulating/ Pre-Braille Skill

BabySymbol
This app has high contrast images that are visually stimulating yet simple. It's an easy cause and effect app that makes an array of great sounds as your young child hits each image. You can set it up as a grid of images or just one large image. Tom has a lot of fun with this app.

Tap-N-See-Zoo (by Little Bear Sees)
This app was created for kids with CVI (Cortical Visual Impairment). It has a black screen with a red teddy bear floating around. When you touch the screen the bear comes to your finger so you can tap on it. When you tap the bear it grows very big and you are rewarded with a fun sound. You can try the lite version for free or buy the app which allows you to customize the colors, speed and sound of the app.

Sound Shaker (by Tickle Tap Apps)
This app is good for finger isolation (a pre-braille skill). First you choose a sound from several images. When you touch the next blank screen little little dots will appear along with a sound. The sounds will change as you hold your finger on the screen. Eventually the dots turn into an egg which hatches and chirps! Very cute.

Interactive Books

Miss Spider's Tea Party (Callaway)
This app is based on the popular book. It is an interactive book along with a matching game, puzzle and painting game. Tom loves playing the matching game because you can also play by matching the sounds of the tiles. I could see Tom really growing into this app as he gets older.

Dr. Seuss's ABC
Another great interactive book. You can't miss with the lovely rhyming of Dr. Seuss! This app really keeps Tom's attention. He can make it all the way from A-Z. Not bad for a two year old!

App Sale!
I couldn't think of a better time to check out some new apps than a sale. Apps usually are only on sale for a couple of days so get them quick!

Little Critter (Oceanhouse Media)
The adorable and mischievous Little Critter books by Mercer Mayer are available in app form and are on sale now for 99 cents. They have several books available.

Do you have a favorite special needs app? Vote for it here!
VOTE! About.com's Favorite Special Needs App

To qualify the app must be:

created specifically for a child/adult with special needs or the parent of a child with special needs.
created for the iPhone, iPod Touch, iPad, or Android.

The visually impaired community is small. Go vote for the apps that are helping our children and give some love back to the developers that make the apps.

Get Crafty for Active Learning!

noreply@blogger.com (Jessica) — Sat, 14 Jan 2012 04:16:00 +0000

New shelves

Here's Tommy clapping in front of his custom built shelves. (Thanks Great Uncle Ken!) Last spring we spent so much time in the same day surgery playroom of the Children's Hospital of Pittsburgh (CHOP) that we took note of the long row of low shelves they used for toy storage.

We also noted that they didn't have any braille or touchy feely books in the playroom. I wrote an email about the books and provided them with some braille book sources. We haven't been back to the same day surgery at CHOP since last spring so we don't know if they got any braille books yet. Tom has an evaluation under anesthesia (EUA) coming up in February or March to monitor his glaucoma and retinas so we will find out then.

But back to the fun stuff! We are completely spoiled because we have so many relatives making things and on the look out for cool stuff for Tommy. Thanks to Uncle Nick and Great Uncle Kevin & Great Aunt Barb we have more glow sticks than we can use in a year. Time for some more glow stick baths!

Playing with a fluffy dog that dances and sings.

So what's next on our list? Making some cool sensory/texture toys. Check out this PDF of Playspaces for the Blind for a bunch of amazing ideas that you really can do yourself. You may have heard of a "little room." It's a small playspace designed to encourage independent play and exploration. You can read more about the "little rooms" and about Lilli Nielsen, who invented the concept along with "active learning." Dr. Nielsen was the second of seven children, four of whom were blind! She pioneered the idea that blind children and children with disabilities need to actively participate in learning. It is a very empowering method of learning.

Child playing in a "little room"

You can purchase a little room (at great cost) or your can make one yourself. The link I posted above has so many ideas to create little playspaces using household items like boxes, clothes baskets and even hula hoops. When Tommy was an infant I made him a "little room" using a clothes basket. I attached lots of textured and sound toys to the sides of the basket and put him inside. Everywhere he touched something was happening! It was a lot of fun for him.

So how do the shelves at the top of this picture help Tom participate in active learning? I think it helps by giving Tom a dedicated play space where he is free to choose his toys and safely explore. I have to balance my desire to have a clean home with the need to have a stimulating home for Tommy.

We are still working on creating an interactive texture wall to put near Tom's shelves. That's the next big project. This is the idea. Whoa, EXPENSIVE! So we are going to make a homemade version. I'll let you know how it goes.

The Great Sleep Experiment - Part 2

noreply@blogger.com (Jessica) — Thu, 12 Jan 2012 04:44:00 +0000

So in Part 1 I told you a million reasons why Tom never slept well. With so many surgeries and recovery periods he just never had the chance to get a routine going before it would be disrupted again.

When we tried sleep training he could never reach the point of falling asleep in his own bed. He would cry until he threw up. So we accepted that he was not capable of being sleep trained at that time and just did what we could to get him to sleep. We used to stay in the living room (tv low and lights off) and let him fall asleep on the couch with us and then we would carry him up to his bed already asleep.

Sometimes he didn't fall asleep until 1:00 am or 2:00 am. He would sleep a couple hours in his bed and then wake up and not be able to get himself back to sleep. Of course he couldn't! He had never developed the ability to fall asleep by himself.

But this December I noticed some changes in him. He was no longer sleeping peacefully in our bed. He was getting up every hour and restless all night. No one was sleeping well. I began to wonder if he would sleep better in his own bed. I think he was too hot and too crowded in bed with us.

Napping post-surgery, Spring 2011

We had also asked Tom's doctors about trying Melatonin many times. But that was before he got his g-tube and he was very underweight. The next time we asked he was on a strong diuretic to help relieve glaucoma pressure. Each time there was a reason why it was not a good time to introduce a new medicine.

But this December there was no reasons not to try Melatonin. Tom's only meds are two eye drops for his glaucoma and his weight no longer a worry. I did some internet research and found tons of studies on the use of melatonin in blind children. I even found what dosages these children were getting. I called Tom's pediatrician down at the Children's Hospital of Pittsburgh (Diagnostic Referral Team) and got the go ahead to try Melatonin. I was able to purchase it over the counter at my local CVS!

Tom is now getting 9 mls of Melatonin about 30 minutes before his bed time. The melatonin helps his body recognize that it is time for sleep. I think that was a major problem for him. His body never knew when to sleep before he started getting Melatonin.

So the Melatonin was a start but it wasn't keeping him asleep. He was still waking up and wanting into our bed. It was time to try sleep training again. (Deep Breath) Sleep training is ugly business but necessary. It is not for the weak. You need an iron will and the knowledge that you are doing this for everyone's benefit.

So while we were was off from work during the holidays I decided to try sleep training again; this time armed with Melatonin and a much older Tommy. The first night was awful. I put Tom into his bed at 9:00 and explained that it's time for him to start sleeping in his big boy bed all night. He wouldn't lay down and he cried and cried. He couldn't believe that he was not getting his way. I repeatedly helped him lay down but I wouldn't pick him up and comfort him. I helped him to lay down and rubbed his back and talked to him.

Wide awake in the back seat

But he never got hysterical like he had before. He complained and he cried but this time their were cycles of quiet too. I stayed in his room quietly and there was quiet music playing. Every time he started to cry hard I reassured him but otherwise I was quiet. He fell asleep at 2:00 that morning.

Every night got a little better. Now sometimes he doesn't even cry when we put him in his bed. I hear him wake in the night now and he is able to fall back asleep himself. I think he was ready to sleep in his bed. Even with Melatonin I don't think this would have worked last year.

Tonight Tommy fell asleep at 9:00. Now it's my turn.

How to fund an iPad

noreply@blogger.com (Jessica) — Thu, 05 Jan 2012 18:01:00 +0000

Family Funding

You can ask for help from friends and family to fund the purchase of an iPad. Often people are not sure what gift to give a child with special needs. Let your family and friends know that you are saving for an iPad. You will be surprised at the generosity of friends and family. They want to help and you are giving them an easy way to do that.

All I had to do was mention to my family and friends that I was going to try to purchase an iPad for Tom and they organized to collect the money and buy one for Tommy's second birthday. It was an amazing surprise and we are very lucky to have a great network of supportive friends and family.

Don't think that an iPad is out of your reach! Get the word out to your friends and family and start saving.

The Great Sleep Experiment - Part 1

noreply@blogger.com (Jessica) — Thu, 05 Jan 2012 05:01:00 +0000

It's 1AM - Who wants to play!

It is no secret that Tom is a problem sleeper. As a newborn he could sense when my head hit the pillow or when I removed my glasses to go to sleep; he immediately woke up. It was agony. He couldn't fall asleep and he couldn't stay asleep. I was a zombie.

A tiny Tommy

Tom ended up sleeping in our bed so we could get any sleep at all. Even the cosleeper attached to our bed didn't work. He needed to be with us to sleep for any length of time. We would start him in the cosleeper but we could never get him to go back to sleep once he woke up.

He also had five vitrectomy surgeries during his first six months of life. That is a lot of stress on an infant. So not only was he always recovering from a surgery during that time, he was also wearing an eye shield to protect his post-surgical eye. These shields are worn for about 2 weeks post surgery while the eye heals. You don't want little fingers pulling the shield off and rubbing the eye. That was another reason to keep him in our bed; so we could hear if he started trying to rip off his eye shield.

Wearing an eye shield

Around the time Thomas was having all these surgeries (monthly 1/10, 2/10, 3/10), he started to refuse feeds. He fell off the growth chart and was diagnosed with failure to thrive that spring. So feeding became our new battle. This also kept him in the weight range of using the cosleeper and kept him in our room.

By the fall of 2010, we decided that it was time to get a g-tube during his next scheduled EUA (an eye exam under anesthesia) so we could be sure Tom was getting adequate nutrition. It was a hard choice but it was great to see him full and getting pudgy. It's so sad to see a skinny baby.

However, the g-tube also interfered with Tom's gag reflex. He became a puker! If he got too upset he threw up. During this time his eye was stable and he was finally feeling happy and full. I started trying to follow the steps for getting a baby to sleep in his own bed. We would stay in the room with him to console him as he feel asleep. Unfortunately he never calmed down. He didn't cry for 15 minutes and then fall asleep - he wailed until he threw up. And where do you go from there? It was back into our bed.

Then in January of 2011, Tom's glaucoma pressures got to high and surgical intervention was needed. It took 3 surgeries and about 5 EUA's to get the pressure under control. So it was more patching and more recovery for a child that was older and stronger.

As Tom turned 2 in September of 2011, he was chubby and happy. His eyes were stable and under control. We had finally hit a patch of calm. This December I decided it was time to work on sleep!

2011 - quite a year!

noreply@blogger.com (Jessica) — Sun, 01 Jan 2012 04:34:00 +0000

2011 has been a big year.

Sleep
Tom is now sleeping in his bed alone all night. Since I've been off for the holidays we thought it would be a good time to work on Tom's sleeping. He had been sleeping in our bed most of the night and no one was sleeping well. We tried different sleep training methods at different times but we were never successful. Tom has endurance and lung power like you wouldn't believe and he used to cry until he threw up. (No sleep advice book ever covered that!)

Christmas overload - catching a nap after presents

A couple weeks ago we tried Melatonin. It is a hormone naturally produced by the body to signal it's time for sleep and you can buy it at CVS over the counter. The cycles of light and darkness (days and nights) are what tells the body to produce Melatonin.

Blindness can really interfere with your sleep cycle. Tom's body never got the message that it was time to slow down and he would just go go go! (Read more about Melatonin here.) I used to laugh when people saw him in action during the day and said, "Oh, he will sleep good tonight." Ha! It never happened. Melatonin won't keep you asleep; it just helps you fall asleep. But at least we can start getting Tom to sleep at a reasonable hour instead of midnight or later.

We have been just putting Tom into his bed when he is tired and then reassuring him periodically until he falls asleep. The first night was awful and I was in his room almost all night. But every night has been better! I think he knows now that he has to sleep in his own bed. He is sleeping better and waking up less at night. I am very encouraged by our progress.

He is eating purees - just mouthing solids

Eating
He is eating by mouth once a day and happily using his improved oral motor skills. He's not consuming enough to cut back on his tube feeds but we do have a starting point and we can build on that. It is so nice to see him enjoying foods!

This progress would not be possible without the patient guidance and therapy Tom receives at the Children's Institute of Pittsburgh. They are so patient and kind. Now that Tom has bonded with his therapists he is more focused and willing to participate. Trust is so important in therapy. It's not a bad idea to just let your child spend some time playing with their new therapists for a session before trying to do any real therapy.

Pre-Braille and O&M
We have vision therapy twice a week and are working really hard on pre-braille skills. Finger strengthening, finger isolation, shape recognition and following along on braille books are are main activities. Tom has a cane but doesn't really use it yet. He can get around our house quite well without a cane and seems to be able to find doorways with ease. It's the toys on the floor or unexpected object that trips him up. Our O&M doesn't think Tom is ready for a cane but I think it would be a big help to him. I just don't really know where to start. I signed Tom up for the NFB's Early Explorers program recently. This free program aims to introduce children to the long white cane at a very early age to build their skills and confidence. I can't wait to get the newsletter and DVD that will guide me in teaching Tom some cane skills.

Braille "Tommy" tag on a Christmas gift

This work Tom does with his Occupational Therapist also contributes to his braille readiness. Along with basic skills like putting on shoes, they do sensory play and balance work to strengthen Tom's core and sense of balance.

Physical
Tom is walking, dancing, climbing stairs and jumping. He spent a long time working on taking steps but once he got it all the other skills quickly followed. Tom has always loved movement and physical play. His new skills bring him so much happiness! He can play games like ring around the rosy and dance around the house to his favorite music. OMG does Tom like music! He loves to play his dad's real electric guitars and jam on his keyboard.

Singing with Dad

He has excellent trailing skills and can get around the house and go anywhere he wants. I will never forget how awesome it was when I was in the kitchen a couple months ago and he came walking in the kitchen, all nonchalant, just to see what was going on. His world has gotten so much bigger now!

Dance!

Medical
Things are quiet medically. I would have never imagined that statement when Tom was 6 months old or even 12 months old. Right now, Tom's retinas are stable and his glaucoma is under control. He is growing and learning. We are very very lucky!

So that's where we are now. Can't wait to see what happens in 2012!

Almost Christmas

noreply@blogger.com (Jessica) — Wed, 21 Dec 2011 23:40:00 +0000

It's almost the end of December. You may be enjoying Hanukkah or getting ready for Christmas. I hope you are having a wonderful holiday with your family and friends.

Tommy is really enjoying all the activities leading up to Christmas. We have had lots of visitors lately; it's great to meet new people and see old friends. Tom has been entertaining everyone who comes to visit with his dancing. All you have to do is put on a little music and that boy will happily dance around for hours. I'm not kidding - like 2 hours of dancing!!! I'm working on getting a good video to post.

I tried to search for my amazon list and it's not easy because the name is long. So here's a direct link!
Thomas Marshall Does It All - Gifts for Blind children

Some people are in a giving mood! I saw that Aiden's adoption grant has grown from $360 to over $900. That is so amazing. Thank you to anyone that donated to help defray the cost of adopting this blind child who is presently in a institution. I hope that people will continue to give and maybe next year Aiden will be spending the holiday with a family of his own.

Tom has already received so many thoughtful gifts this year. He got a gift card for braille books from Seedlings from our family in Florida and Alabama. And handmade shelves for his all his toys that are Tom height and painted black and white from his Great Uncle Ken. And we got a huge box of glow sticks for lots of glowing bath time fun and some itunes gift cards so we can get some new apps and music for Tom's iPad. And we got a couple braille Christmas cards this year too. It has already been a great Christmas!

Gift Ideas for Blind Children

noreply@blogger.com (Jessica) — Thu, 15 Dec 2011 21:51:00 +0000

Rocking with his Mozart cube

I created an Amazon.com Wish List this year for Tommy. It really helped Tom's grandparents find gifts for him that are appropriate and fun! I thought I would share it with everyone here so that you can find great gifts for the blind/visually impaired child in your life.

On Amazon, go to the Wish List section and search for:

Thomas Marshall Does It All - gifts for Blind children

He is getting this toy again! He loved it to death.

Some are classic wooden toys, and some are light-up musical toys. There are some toys for babies and a couple games for older kids. I just want to help point you in the right direction and get you thinking. I compiled the list using some of Tom's favorite toys and some of the toys he will be getting for Christmas. There are a few toys on the list that we have not tried yet. I put notes in the comments section that tell you if we have used the toy.

Good luck picking some fun toys for the kids in your life! There are so many great options out there. Things to look for:

Texture
Contrast
Music
Lights
Sound
Ease of Use (if you can't make it work, they probably can't either)

Gift Wrapping

Once you have all those great gifts you have to wrap them up. This is another opportunity to make it interesting for your child. You should use solid colors of wrapping paper to create an uncluttered visual space. Shiny foil papers can also be used to create visual interest.

High contrast and texture can be incorporated here as well. You can use white paper and a big red bow. Black and white is always a classic look and provides contrast that is easy to see. You could attach a soft fabric ornament or a small bunch of holly to the gift for a festive bit of texture.

Don't forget to use braille labels! I made a bunch of "Tommy" labels with my braille labeler to give to Tom's grandparents and to use on our gifts.

Fun at the Mall

noreply@blogger.com (Jessica) — Thu, 15 Dec 2011 05:43:00 +0000

So today we didn't have any therapy or doctor visits scheduled! That is so rare. I can't even tell you how surprising it was when I looked at the schedule and realized we had a real free day just for me and Tom.

I decided it would be a good day to check out the mall this morning and see what Tom thought of riding the train and meeting Santa. The night before I asked him if he wanted to go to the mall and ride the train and he got the biggest grin on his face.

a rowdy little grin!

So this morning we went to the mall and met Santa! He sat on Santa's lap and got his picture taken. I told the photographer Tom was blind so he probably wouldn't look up. They use stationary cameras so they can't really do anything to accommodate you anyway. But they did have a little squeak toy that made Tom smile. The photographer was quick and snapped a picture just in time to catch him smiling. Even though his head is a little down in the picture I can't be happier. He was so brave and so open to the whole process. He handled it like he meets Santa everyday!

Then we got on the train together and let me tell you that little train really moves! I guess it has been a long time since I have been on the train at the mall. But we had fun zipping along in the train and I think we will be back for more train rides before Christmas is over.

The Spirit of Giving

noreply@blogger.com (Jessica) — Mon, 12 Dec 2011 03:07:00 +0000

Christmas is wonderful. I love to spend time with family and enjoy giving thoughtful gifts. We don't have as much money as we had when I used to work full time. I can't work in my field right now but we are lucky to be doing just fine. Right now when so many families are struggling, I feel like we have so much.

Around this time of year many people try to give back to their community or help those in need. That's the best gift.

If you are looking for a very worthy recipient of such help look no further than a young boy named Aiden. He is five years old and is living in an orphanage in Eastern Europe. He is also blind and it is not likely that he will be adopted because of his disability.

Aiden, age 5

I am not asking you to adopt him, though that would be wonderful. Please consider donating to help finance his adoption. Through Reece's Rainbow you can donate to a grant that will be used to help a family adopt him. It is expensive and can take several trips abroad to adopt a child who is not from the United States. This organization helps children with Down Syndrome and other special needs find families. I can't think of anyone more deserving than this sweet boy.

All of the stimulation and love that I give to Thomas is missing from this child's life. My heart just breaks to read about him and know that he could be so much more if he had a family to love him and teach him. He knows his name and is able to walk and understands simple directions. I find that very impressive considering the lack of interaction and education this child would get in an orphanage.

There is currently $360.22 available to assist in his adoption expenses. Let's see if we can raise that number! If you do one beautiful and selfless thing this year let it be helping this child find a family.

I know this is an unusual post for me but I had to share this in hopes that we could help this child.

Homemade Christmas Countdown!

noreply@blogger.com (Jessica) — Wed, 07 Dec 2011 20:03:00 +0000

You don't have to be super crafty to create a fun christmas calendar for your child! It's so easy and you can bring as much texture into the project as you want.

Texture Santa Calendar

Not dry but you get the idea.

Here's what you need:

Printed picture of Santa ( I googled printable Santa face) print 2 or 3
Glue
Cardboard backing to secure your Santa Calendar to. I used the bottom of a box.
Cotton Balls
Scissors
Felt (Optional)
Paints (Optional)
Holly leaves (I used some from our yard)

My goal was to incorporate as much texture as possible into this project. I cut out shapes for the hat and the border of the hat in felt and glued that onto the picture. I glued a cotton ball to the end of the hat and used 1/2 a cotton ball to make each side of the mustache. I used paint to create holly berries and three real holly leaves from the yard. You could even add googly eyes if you had ones the right size.

So every day in December you add another cotton ball to Santa's beard and by Christmas it will be full! You could use braille numbers to count to 25 but I think this year we will just use big black dots as our markers. He can find a dot with his finger and then we will glue a new cotton ball on every night.

You could modify this craft for Hanukkah buy adding a puff of flame to the menorah every night!

I can't wait for this thing to dry so we can get started filling in that beard!

Christmas Concepts

noreply@blogger.com (Jessica) — Tue, 06 Dec 2011 17:18:00 +0000

We put up our Christmas tree last week and Tommy has taken it all in stride. He seems unimpressed by the fact that we now have a light up tree in the house. It takes a lot to surprise him I guess.

plastic ornaments can look pretty fancy!

He did enjoy touching the many textures of the ornaments as we put them on the tree. This year we decided to give the crystal and Lenox ornaments a rest since I fully expect the tree to fall over at least once. They sell some really beautiful plastic ornaments at Joann's (the craft store) that are affordable and don't look cheap.

Tom avoids the tree well but occasionally he dances right into it. We haven't had a full contact event yet - just minor brushes with the tree. He does not appreciate the bristly nature of the branches but he doesn't freak out over it either. He did have some fun with the garland before we put it on the tree.

Sorry about the boogers. they were out of control that day!

We have been talking about Santa Claus too and trying to get him excited about that. Since he can't see Santa everywhere like other kids I'm trying to introduce the idea through Christmas songs and books. We got a nice braille Christmas book from Beulah Reimer Legacy. It came so fast! We also have a book with a fully recorded reading of the Night Before Christmas that was read by Derek's Aunt Cheryl, Uncle Ken and Cousin Scott. It was a great gift we got last year.

We plan on making a trip to the mall to see Santa. It doesn't get more concrete than that for concept building! I'm trying to figure out the least busy time to go. At the very least I think he will love the riding the train.