Teen "Speaks" Through Camera

I would like to introduce you to an AMAZING teen, who dispite his brain abnormality, has defeated all of the odds. Who has accomplished more than any of his doctors ever thought that he would. And who has found a way to communicate, with others without words....

Mohonasen High School student Robert Wright, 18, smiles as teaching assistant Yvone Pierce lines up his digital camera during a presentation of his latest photography.

Following is the article that appeared in the "Daily Gazette" Schenectady, NY, on Tuesday, June 9, 2009.

Teen "speaks' through camera

Handicapped student has outlet for his creativity.

ROTTERDAM — Robert Wright nods his head to his left shoulder and the flash of his digital camera briefly illuminates the Mohonasen High School library.

A smile forms on his face, as teaching assistant Yvone Pierce readjusts the camera fastened to his wheelchair. She asks if the positioning is all right and his light blue eyes roll upward, indicating the affirmative.

“When he’s ready to take a picture, he’ll snap it,” Pierce explains.

He nods his head again, depressing a small button affixed to his headrest. This time, he takes a picture of a classmate, who returns his beaming smile.

Suddenly, Robert is communicating with the world around him. Only he’s doing it without a single spoken word.

“This is a huge step in his ability to communicate,” said Sue Braiman, a business education teacher at Mohonasen, during an exhibition of Robert’s photography Monday.

The 18-year-old was born with holoprosencephaly, a birth defect that prevents the forebrain from dividing into hemispheres. As a result, Robert cannot talk or walk, and has extremely limited use of his hands.

Ordinarily, his only modes of communication are by using a sequence of eye movements or an electronic device that allows him to select from a sequence of statements. Using the camera provides him with a whole new realm of expression that was previously unavailable to him.

Robert’s interest in photography started in 2007 when a BOCES teacher was asking him about his interests. Robert indicated that he was interested in taking pictures of animals.

Later, Robert indicated he wanted to try taking pictures with a camera the teacher was using in the class. Initially, he was only able to take shots by having someone hold the camera for him and depress the shutter button.

Then in September, Robert began studying under photography teacher Rick Crowe, who suggested fastening the camera to an arm mounted on his wheelchair. That along with the shutter button on his headrest gave Robert more freedom with his photography.

But more importantly, it’s allowing Robert to engage his surroundings like he’s never been able to do before. Pat Wright, his mother, said Robert’s newfound love of photography has given him new purpose as he copes with his disability.

Photography also gives Robert an outlet, which is something his older sister, Mary —who also has holoprosencephaly —never developed. Wright said Mary, who is 10 years older than Robert, isn’t nearly as engaging with her surroundings.

“It does give him more independence,” she said of Robert’s photography. “I feel very proud that he’s identified an interest.”

Robert uses Mohonasen as his canvas and his teachers are amazed by his artistic instincts. His pictures range from the simple to the complex; from some that show depth and shadowing to others that profile the people he sees at school.

E.J. Hanley, one of Robert’s special education teachers, picks up one of his prints featuring a Mohonasen teacher talking. She explains how Robert focused instead on a poster behind the woman, who is ancillary to the shot he was striving to capture.

“He’s young adult with a tremendous brain and a good photographic eye,” she said.

Now the Wrights and Robert’s teachers at Mohonasen are hoping to find the teen a better camera to use. And for the time being, they’ll continue to help him explore his newfound hobby.

“We’re hoping there’s a lot more to be seen of his artistic ability,” Braiman said.

Do You Believe Me Now??

This link was passed along via the Bilateral Anophthalmia Yahoo Group, which I'm a member of. It is an incredible and touching video. Timmy is visually and hearing impaired. We also have other issue that we must deal with on a daily basis. This video only covers a hearing impaired individual. And their ability to try to overcome their disability. Enjoy!

http://www.youtube.com/watch?v=_AmMCDLgiA0

Happy Father's Day!

Happy Father's Day to all the Dads, stepDads, GrandDads, Dad-In-Laws and to the "special someone" who steps forward to be a Dad to a child who needs one!

"Any man can be a Father, but it takes someone special to be a Dad!"
-Author Unknown-

Thank You Dad for always being there.
Showing me just how much you care.
Through the sleepless nights,
when I cannot rest,
But am overcome with giggles,
Which puts your patience to the test.
Throught my illnesses, doctor visits and surgeries,
I can always count on you to be by my side.
The endless hours of therapies,
Feeding me,
Bathing me,
Cuddling and Rocking with me,
Singing silly songs,
And pretneding to be a Big Grizzly Bear,
These simpliest of things show me just how much you care

Teaching me that dispite my disability
it is still okay to laugh.
With your gentle hands you guide me,
Helping me to learn and grow,
Like a caterpillar leaving its caccoon,
My grwoth and maturing is very slow,
But with your patience and understanding,
I'll get there, this I know.

If I had a way to tell you,
These words I would say to you,
Dad you're my bestest friend.
And I LOVE You!

Dad of the Year Award!

I can't say that I know too many Dads who would sit this patiently for over an hour, while their 3 year old daughter practiced her Cosmetology skills on them....
How cute and how sweet is this???

What Makes a Dad
-Aurthor Unknown-

God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle's flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so, He called it ... Dad!

Timmy's IEP

The other day I FINALLY received the final copy of Timmy's IEP. We had the IEP meeting on April 1st, to set goals for Timmy's kindergarten school year, which starts July 21st. There was some info that had to be obtained before the final copy could be prepared. We had to get the school system a copy of Timmy's most recent audiological report. We had an appointment on April 7th with Timmy's audiologist (Pat Rouche) at UNC in Chapel Hill, N.C., at which time we discussed the use of a FM Trainer System for Timmy during instructional learning at school. The Mrs. Rouche agreed that being we had seen more spoken words from Timmy when he was wearing his hearing aid that a FM Trainer COULD be tried to see what if any results Timmy would gain from the use of the FM Trainer System. The Mrs. Rouche also suggested that we stop having Timmy to wear his hearing aid, because he tested "normal" hearing in his left ear and by him continuing to wear the hearing aid, we would be over amphifying his hearing, which in turn could cause damage to his ear.

Well, when the school's audiologist contacted Mrs. Rouche, she acted as though we had NEVER had the discussion about the FM Trainer System. She also stated to the school's audiologist that she felt that Timmy would not gain anything with the use of a FM Trainer System.

Why is it as parents, we have to put up a FIGHT to get services for our children? Why is it that teachers, audiologists, doctors, therapists etc... question our knowledge about what we KNOW to be in our child's best interest and WILL work best for our child?

After over 30 minutes of TRYING to get my point of view across as to WHY I feel that a FM Trainer WILL benefit Timmy, I'm happy to say, that we all were able to come to an agreement. A trial period will take place 4 weeks after school starts. The first 4 weeks, is to give Timmy time to get use to the new school setting and for the teacher to get to know Timmy a bit. When the trial starts data will be collected. The first part of the trial will be without the use of the FM Trainer System. The second part of the trial will be with the FM Trainer System. Each trial period will last for 4 weeks. At which time, once the trial period is over, we all will sit down and go over the results. If this trial doesn't work, we will consult with Mrs. Rouoche once again to see if she has any suggestions.

I'm just afraid that being Timmy will be in a special needs class with children of all ages (K-5th grade) and varying degrees of disabilities, that Timmy will not be always be able to hear the teacher, especially when she is teaching the class as a group. I have met with and spoken with Timmy's kindergarten teacher. She estimates that she will have a class size of at least 10 students this year. So there is absolutely no way that she will always be able to be facing Timmy and speaking to him within 4 feet. And there is no way she will be able to always work with him one-on-one. I REFUSE to let Timmy be a stastic, placed in a corner and left there to entertain himself, just because he has a severe learning disability! Timmy IS and HAS Potential! Given the opportunity, correct teaching strategies and materials, Timmy CAN and WILL go far!

This poem fits this situation perfectly.... Oh the stress, headache and fight needed to get the IEP FINALLY right!


The IEP

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.
Would you, could you
Like the form?
I do not like the form I see
Not page 1, not 2, not 3
Another change
A brand new box
I think we all
Have lost our rocks.
Could you all meet here or there?
We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.
Would you, could you meet again?
I cannot meet again next week
No lunch no prep
Please hear me speak.
No, not at dusk. No, not at dawn
At 4 pm I should be gone.
Could you hear while all speak out?
Would you write the words they spout?
I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).
You do not like them
So you say
Try again! Try again!
And you may.
If you will let me be,
I will try again
You will see.
Say!
I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You got it right!"

We're Home!

We arrived home today at about 2:00PM. Unfortunately, the decannulation was not a success. We are disappointed obout this, which is to be expected. But this doesn't change how much we love Timmy, the quality of his care and the activities that we do with Timmy. Some of the activities will just have to be adapted, so that he can participate.

When Dr. Noah (fellow that works with Dr. Z) did the scope today, He reported that the area where the lasering had been done looked great, but he found that Timmy STILL has a floppy airway just above his vocal cords and that his tongue almost completely obstructs his airway. We got this same diagnoses with Timmy's first ENT (Dr. Hulka) a couple of years ago. This made the 3(?) scope that Dr. Z or one of his fellows have done. We specificly asked previously IF they had seen a floppy airway or a tongue obstruction, and we were told NO!

When we arrived and discovered that the game plan had changed, I somehow knew that Timmy wasn't going to do well. Dad spent the majority of the week with the coordinator to set everything up for this scheduled procedure. He was told that Timmy would be having the scope preformed in one of the Pulmonology Treatment Rooms under a mild sedation. Instead, Timmy was taken to the OR, where he was give general anesthesia and completely snowed under. When they woke Timmy up, I know for sure that Timmy panicked! This was most likely the cause of the tongue obstruction. I feel that the tongue obstruction is strictly positional. As for the airway issue, yes it is possible that is still there and "could" still pose a problem. Timmy has had a recent sleep study. And again we asked if he had any obstructions that wre noted, we were told NO!

When Timmy removes his trach while at home, he DOES breathe through his mouth and nose and he shows absolutely no signs of distress. This is another reason WHY I feel that the tongue obstructing the airway is positional. Timmy has had MANY scopes and the tongue obstruction has only been seen twice. Hmmm, one would think that IF the tongue was really an issue, wouldn't it have been seen more frequently with Timmy had the scopes???

The airway team (ENT's, Pulmonologist, Peds. Respiratory and whoever else) will meet again on Monday to discuss Timmy's case, to see "what if anything" they are willing to do to solve the airway and tongue obstruction issues. It was my impression, while speaking with Dr. Noah today, being that Timmy has so many other medical issues, the airway team will most likely decide NOT to do anything further.

IF by some chance the airway team decides to proceed, we still have two options, which may be open to help resolve the airway issues.
1. We could let Dr. Z and the rest of the team use a rib graph to build up Timmy's airway. There is also a procedure that would be needed to bring the tongue more forward in the mouth.
2. We can contact the ENT team at NIH (National Institute of Health) they have devised this balloon type thingy that they have been doing trials with to help enlarge and strengthen the airway. I don't have much info on this. It was only mentioned to us briefly a while back. Timmy would have to be evaluated at NIH, before they would be able to make a determination if he is even a canadate for the procedure.

Dad is going tomorrow to buy the kids a pool. Yes, Timmy WILL still get to go swimming. I came up with the brightest idea so that this could happen. (Okay, I'll admit, I'm probably not the first person to ever think of this.) Dad will be purchasing a 12x30 pool. With the pool filled to its minimal water level, Timmy will fit perfectly while safely secured into his bath seat. There is also the option of a float, but this puts Timmy above the water and not in it. This makes water play not as fun, in my opinion. Especially for a boy who ""Thinks" he is a duck or a frog!

"D" Day is here!

"D" is for decannulation. The airway team, which consists of Timmy's ENT and his Pulmonologist (I'm not sure who else was involved.) had a meeting on Monday. They reviewed the video that was taken during the lasering of Timmy's airway, which showed his upper and lower airway. Everyone felt that being everything looks remarkable that it would be ok to proceed with decannulation, rather than waiting for another 1-2 weeks. Timmy has to be a UNC hospital by 7:30am on Friday. Someone from the Pulmonology team will use a scope to take a quick looksie at Timmy's airway, just to make sure tha there isn't way swelling, tha it is healing properly and to make sure nothing else is going on, which would delay decannulation. At the time of the scoping, the Doc will pull out Timmy's trach. They will place a sterile bandage over the stoma opening. Timmy will have to stay 2 days in the hospital for observation. The "team" feels that within the 2 days we will all know for sure if Timmy will pass the tests or fail. We were told that typically "IF" a child is not going to tolerate having their trach out, it will be apparent within a few hours. And if there is going to be an issue to arise, it most likely will appear at nap time or when the child goes to sleep for the night. We were told that "IF" a child tolerates their trach being out for 2 days, they typically will continue to do well.



I'm feeling so many emotions right now. I'm excited, nervous, scared, worried, anxious, excited! I want this to happen soooo bad. BUT do not want to have to face the let down "IF" for some reason Timmy should not tolerate the trach being out. My biggest fear is that most likely Timmy will fail at night while sleeping, because he is such a shallow breather.



Keep checking back, I'll post updates on how Timmy is doing.

Please Can I Have A Pet???

Mama's little boy is growing up so fast! Today was Timmy's last day of Pre-K. I can't believe that an entire year of school is already over! They had Fun Day at school today. Timmy's favorite activities were water play and petting a Rat snake and a Corn snake. He just thought that it was so funny to feel the snakes wiggling in his hands and he found it even more funny when the snakes wrapped themselves around his hand and arms. I'm sure if he could have asked, he definately would have asked for a pet snake! Mrs. Lowman, Timmy's teacher took a few pictures. I'm hoping that we are able to get together, so that I can download her disc to our computer. So that I can share some pictures.

Last week we volunteered at Timmy's school. I had all of Timmy's classmates help me to create a momento project for Timmy that he would be able to enjoy himself. We used a white pillow case, assorted colors of fabric paints and puffy fabric paint. I had each child place one of their hands into their favorite color of fabric paint, then place their hand onto the pillow case. This left a slightly raised hand print of each child. I then took a permanent marker and wrote the child's name under their hand print. Once all of the hand prints had completely dried, I used puffy fabric paint to outline each hand print. By outlining each hand print, it makes it easier for Timmy to be able to feel each hand print. Being that Timmy can't see pictures, I felt that him having a momento in which he could feel would make for nice memories for him. I'll try to post a picture of the completed project, just so that you can see how nice it looks.

Physical Therapy

Doesn't Timmy look like he is working very hard? This picture was taken during one of last weeks physical therapy sessions. I wish it was a bit clearer, but all I had on hand to snap this picture was my cell phone camera. As you can see, Timmy is standing nice and tall. He is even holding onto the walker with BOTH hands. Mrs. K is only providing minimal stability at Timmy's waist to help him to find himself in space, in order for Timmy to have better balance. We are so very proud of Timmy! Mrs. K. has only been using the walker in therapy with Timmy for about a month. This is one of a very few times that Timmy has been willing to fully participate and tolerate trying to use the walker. I guess after a long hard day at school, who would want to come home and work so hard also...?

And we wait....

Timmy's surgery went very well. Timmy isn't in any pain. There was only minimal scarring, his nasal passages are still open and his airway is of average size.

But decannulation has been put off for right now. By putting off decannulation, we will accomplish two things. 1. Timmy will have time to heal. 2. Timmy will not have to go back to the OR to be scoped to check his airway. Dr. Zdansky is going to release Timmy into the care of Peds Pulmonology. Peds. Pulmonology is able to admit Timmy to the regular Peds. Unit and do a scope to check the airway in one of their treatment rooms. The only thing that Timmy will need is a mild sedative. There won't be the stress and risk associated with anesthesia or the many sticks that most of the time are necessary to obtain IV access. IF the all of the doctors are willing to work together, this decision should only set back decannulation by a week or two. There will be a meeting of ENT and Pulmonology on Monday. At this time the doctors will discuss Timmy's case and agree on a date for decannulation. By mid week, we will start calling if we haven't heard anything to push along the process, so that we can get a date. We really would love to have Timmy's trach out by the time he starts school in July.

But like the saying goes; Patience is a Virtue! Which I don't have much of....Patience.

Is it really worth all of this!

We have all been counting down the days. This time Timmy only made it to day 6 before his right conformer came out, yet again! Darn his thumb sucking! In my opinion, the way Timmy sucks his thumb is what is causing the conformer to keep coming out. When Timmy sucks his thumb, he places his pointer finger up against his right eye lid and sometimes pushes. This of course dislodges the conformer and it comes out. Others seem to think that the reason that the conformer keeps coming out is because his right eye is rejecting the foreign body it the eye socket. If this was the case, each and everytime that a conformer or hydrogel had been placed it would have come out prematurely. But there has been instances where the conformer or hydrogels have stayed in place until replaced during surgery. I don't know. I have tried everyting I can come up with to "try" to break the thumb sucking obsession, but nothing has worked. I'm open to any and all ideas.....

Is it rreally worth it to keep putting Timmy through surgery after surgery and the pain and discomfort associated with having the conformers placed? What are we really accomplishing here? Is the potential of Timmy having blue or green eyes, what we want? What we want and is absolutely necessary for Timmy? Or is this what Timmy wants?

Even though Timmy can't verbally tell us what he thinks or wants in regards to having prosthetic eyes, maybe his pushing the conformer out, even though it is done during thumb sucking, is Timmy's way of telling us that he doesn't want eyes or that he could care less either way. I know the other morning I was talking to Timmy about how important it is that he finally give up the thumb sucking obsession. How cute he would be with green eyes IF we could get him to stop pushing the conformer out while sucking his thumb. With Timmy's vocalizations when I mentioned the "green eyes" it was like he was opposed to the idea of green eyes. Was it just the green eyes? Or was he trying to tell me that he doesn't want any eyes? I can't say for sure, because he chuckled, which is his way of saying "yes," when I mentioned that we could get him blue eyes if that is what he would prefer.

Is Timmy having eyes what we want? Yes, it would be nice to look at Timmy and see him with eyes, even though the eyes wouldn't be looking back. The eyes would help Timmy look more "normal," for lack of a better word. We wouldn't get a lot of nasty stares, remarks or questions from strangers, who are just being nosey. But in all honesty, this isn't a good reason for us to want Timmy to have eyes. Our decision shouldn't be based on what others think or feel. We will love Timmy unconditionally with or without prosthetic eyes. And as his parents and family, our thoughts are what really matter.

Some people feel that having prosthetic eyes are only for cosmetic purposes. We have also been told by several of Timmy's doctors that it is medically necessary for Timmy or most children to have prosthetic eyes. Wirhout eyes the bones in the face will not grow properly, thus causing the face to be deformed around the eye sockets and nose areas. This deformity could also lead to the nasal passages closing because of the way the face would grow without the eyes to support the bones in the upper portion of the face. If this is true, then absolutely yes, it is very important for Timmy to have prosthetic eyes. One day soon, we are very hopeful that he will be able to have his trach removed. We all feel that this could lead to bigger, better and exciting times for Timmy.

Dad put in a call to Dr. Richard to inform him that the conformer has come out. His nurse Toni is suppose to be getting back to us to let us know what Dr. Richard has decided to do, surgery soon to replace the conformer or wait 3 months until it is time to replace the conformer in the left eye.

So this saga continues along with the search for the perfect remedy for the thumb sucking obsession......

Almost There!

Some people have asked me what the conformers look like that Timmy has in his eye sockets and how big they are. Here is a comparison picture of the size of the conformers that Timmy currently has in each of his eye sockets.





The conformer is on the left. It measures 18mmx16mm. As you can see, the conformer is an almost clear piece of plastic, which is somewhat shaped like a sea shell. On the right is a dime. If you place the conformer on top of the dime, they are both the same size.


Timmy had surgery with his Occular Plastic Surgeon today. Timmy's eye sockets have made great progress expanding. Timmy's left eye socket is ready for a prosthetic eye. His right still has a bit more to grow, before a prosthetic eye can be placed. IF we can be successful in preventing Timmy from "picking" the conformers that are currently in place out, in 3-6 months it is very possible that we could be choosing prosthetic eyes for Timmy. Even though the left eye socket is ready for a prosthetic eye, the Occularist wants to wait til both eyes are ready. He feels that being Timmy will have to go into surgery the first time the prosthetic eyes are placed, that it would be easier on Timmy to do both eyes at once, rather than having to schedule two different surgeries and possibly more IF Timmy happens to remove the conformers that are currently in place.



This picture was taken today following surgery, once the bloody drainage had been cleaned from off of his eyelids. As you can see, he wasn't in the mood for picture taking. I had just finished giving him a long lecture on how WE are going to keep him from removing the conformers this time.

With his red hair, his daddy's temper and his stubbornness, I think that he would look georgous with green eyes. What do you think???

What A Week!!!!

Thank Goodness this week is half over! This is and has been one very busy week, full of Pre-Op, surgeries and Post-Op appointments.

Before I go any further, I want to take a minute to Thank Timmy's Home Health Nurses. You know who you are! Thank You So Very Much!!!!! If it wasn't for this group of dedicated, caring and loving nurses, who were able to get together, plan a schedule, which would work for each of them, so that Timmy could have 24/7 nursing coverage for 2 nights. Floyd's surgery would not have been able to have been preformed.

And a Special Thank You to the nurse who worked overnight, for cleaning the downstairs bathroom, just to keep yourself busy, so that she could stay awake. Thank You!!! Oh and by the way..... The living room floor could use some spot cleaning or a nice shampooing..... Just Kidding! :0)

On Monday, my Mom and Floyd each had Pre-Op appointments at Duke Eye Center. Their eye surgeries were on Tuesday, with Dr. Natilie Afshari. With Post-Op appointments earlier this morning. My Mom had eye surgery to remove fibroidic tissue from her eye as well as some scar tissue. The Doctor placed a piece of amniotic tissue over her cornea along with a contact lens, which is to act like a bandage during healing and to keep the cornea from drying out. Once her cornea has had some time to heal, the Doctor will decide if there is anything else that she can do to help improve my Mom's vision, like a corneal transplant.

Floyd had cataract removal surgery on his right eye. The surgery was a BIG SUCCESS!!! Floyd is able to see clearly now and being that the Doctor was able to place most of his eye glasses prescription into the lens that she implanted during Floyd's cataract removal surgery, Floyd no longer has to wear glasses. The Doctor feels that the most he will need is a contact lens for his left eye to help correct the vision in that eye and possibly some reading glasses. As the eye heals, we will know for sure just how much Floyd's eye sight will improve and how much his vision will need to be corrected.

Myself, Floyd and my Mom all have follow up appointments with Dr. Afshari, on May 27th. starting at 11:00am.

Tomorrow we return yet again to Duke Eye Center, so that Timmy can have his Pre-Op appointment, with surgery scheduled to replace his eye conformers on Friday morning with Dr. Richard.

We also have the date of Timmy's "hopefully" last surgery that will be needed before he can have his trach removed. On June 4th. Timmy will have surgery with Dr. Zdanski, at which time Dr. Z will laser Timmy's airway to remove scar tissue, which was most likely caused by Timmy's frequent extubations and intubations, while he was in the NICU. Following this surgery Timmy will be required to stay at least 1 night for observations.

On June 11th. only 1 week post surgery, Timmy will be admitted to UNC. At which time Dr. Z will attempt to remove Timmy's trach. This stay will be a minimum of at least 3 days, but "could" be as long as a couple of weeks. No matter at the length of stay, we are sooo very hopeful that the airway surgery will be a success, so that Timmy will do well with the trach removal process. This is the very first time in 5 years that we have been this close to Timmy having the possibility and chance to "try" to have his trach removed. We are all so excited, hopeful, but yet scared all at the same time.

If the lasering of the airway doesn't work, there is one other surgery that "could" be preformed. The Doctor would take a rib from Timmy and use it to build Timmy a larger and more firm airway. But the stress of this surgery along with the extreme pain, we would have to do some long consideration before consenting to let Timmy undergo this last ditch surgery.

We choose to stay positive that the lasering will be a success and that Timmy WILL be able to have his trach removed without any further surgeries. Because Timmy is really looking forward to that loooong swim in a pool and a trip to the beach. He has been practicing his floating and splashing, during his bath time at night.

So if anyone is wanting to purchase any stock. I'm off to buy some Quilted Charmin and Preparation-H!!!! After this week and the weeks to come, I/We are definately gonna need it!

Happy Mother's Day!

To all Birth Moms, Stepmoms, Grandmas, Serrogate Moms, Adoptive Moms, Foster Moms, mom-in-laws, and to those who step forward to be a Mom to a child in need! Thank you Moms for ALL that you do! I Love You! Happy Mother's Day!

Here is a poem for you.....

MORE THAN A MOTHER
---By Kari Keshmiry---

When God set the world in place,
when He hung the stars up in space,
when He made the land and the sea,
then He made you and me.

He sat back and saw all that was good,
He saw things to be as they should.
Just one more blessing He had in store;
He created a mother, but whatever for?
He knew a mother would have a special place,
to shine His reflection on her child's face.
A mother will walk the extra mile,
just to see her children smile.
She'll work her fingers to the bone,
to make a house into a home.

A mother is there to teach and guide,
a mother will stay right by your side.
She'll be there through your pain and strife,
she'll stay constant in your life.

A mother will lend a helping hand,
until you have the strength to stand.
She'll pick you up when you are down,
when you need a friend she'll stick around.

A mother is one who listens well,
will keep her word; will never tell.
A mother never pokes or pries,
but stands quietly by your side,
giving you the strength you need,
encouraging you to succeed.

A mother is one who can be strong,
when you need someone to lean on.
You're more than a mother to me;
a reflection of Him in your face I see,
a love that knows no boundaries.
I'm glad that you chose to be,
all this and more to me.
You share a love that knows no end,
you're more than my mother,
you are my friend.

Thank You Mom!!!

Sunshine and Coffee

Timmy was released from hospital yesterday. We arrived home about 4:30pm. When Merry (Timmy's home health nurse) and I arrived, dad and Timmy met us in the hallway of the Peds. unit. It was so nice to see Timmy smiling and to be able to hear his contageous laughter once again!

The blood work, x-rays, ultrasound, and cultures (blood, urine and sputum) all came back with negative results. Dr. Ali feels that Timmy's needing to be hospitalized, was due to the stress from the pain from the surgery. Thus, the stress and pain caused Timmy to have uncontrollable blood glucose levels. Timmy's blood glucose levels are still slightly elevated, but much more controllable. The blood glucose levels have been in the mid 200's. Today and yesterday the blood glucose levels have been in the low to mid 100's.

I have to admit, this is one time that a doctor is correct. Dr. Ali's diagnoses of the cause of Timmy's elevated blood glucose levels, was due to the pain and stress from the surgery. So this goes to show that sometimes caring and loving doctors can be right in their diagnoses. And mom has to swallow her pride and admit that this time she was wrong!

This morning and yesterday is the first time in over a week that Timmy has smiled or laughed. It was so nice to be able to wake up this morning to my sunshine and cup of coffee. Timmy's smile the first thing in the morning is like a ray of sunshine and his contageous laughter is better than a cup of coffee.

Seeing Timmy's smile and hearing his laughter really makes me think. With sleep deprivation, the stress of everyday life, depression, anxiety, fatigue, aches and pains, etc....Who am I to complain? What right do I have to do so?

With all of the illnesses, hospitalizations, surgeries, doctors and nurses poking and prodding, the endless needle sticks to obtain an I.V. site or to get blood samples, not being able to verbalize thoughts and feelings, not being able to run or walk to join in on the fun with the other "typical" playmates/classmates, having to depend on others for your needs for survival, etc...This is Timmy! And through all of this he STILL finds the ability to smile and laugh. So I ask myself once again, Who am I to complain? What right do I have to do so? Seeing Timmy's smile and hearing his laughter the first thing in the morning makes all of my aches and pains, worry and depression go away, at least for a little while. And once they return I go to Timmy to get a little more sunshine and another cup of coffee!

Another Update

Dad (Floyd) spoke with Timmy's pediatrician mid-morning. The cultures that were taken on Thursday, have not grown out anything.

We placed yet another call into the ENT on call. No one returned our call of course. So we decided that if we can't get anyone to return a call to address our concerns, we would just go to them to get our concerns addressed.

We took Timmy to the ER at UNC-Chapel Hill, N.C. Timmy's Endocrinologist felt that it was in Timmy's best interest to be admitted to hospital, being that we are having to give Timmy more than double the normal amount of insulin just to keep Timmy's blood glucose levels in the upper 200's. Dr. Ali (Endocrinologist) also felt that by Timmy being admitted to hospital test could be run just to check everything to make sure that there isn't an underlying cause to the elevated blood glucose levels.

Dr. Sellers (I think this was the Dr.'s name), the ENT resident on call, came to the ER to examine Timmy. He took a good look into Timmy's nose and mouth. The Doc stated that Timmy is healing very well. He also said that everything that we have been seeing (the white patches on Timmy's tongue and throat) is normal. The patches are where the areas are healing and the scab will fall off from. The yucky yellow drainage from Timmy's nose and the tan drainage into his mouth and airway is also normal. And more importantly, he reassured us that the horrible, drop dead, foul smell that we smell from Timmy's breathe is also normal. The horrible smell is what is/was really concerning to me. The day following surgery the smell I will compare to that of the sour smell from "garbage truck soup." And by Thursday the smell had changed to what I will compare to "dog poop or a dirty wet dog" smell. Why weren't we told these things were normal and to expect something like this upon discharge following surgery??? If we had been told, it sure would have saved ALOT of unnecessary worry!

A X-ray and blood work have been preformed. The X-ray results are back and the X-ray looks very good, no sign of a pneumonia or other respiratory issue. Only some of the blood work results are back, and those that are back are normal.

Dr. Ali feels that most likely that the elevated blood glucose levels are due to the pain and stress of the surgery. As "Mom Endocrinologist" I'm not sure if I buy that explaination completely. Timmy has undergone many surgeries, the most stressful being the placement of his Mic-key button with a Nissen Fundoplacation. Following this surgery Timmy's blood glucose levels didn't become this wacky. Well, the blood glucose levels did go wacky, but that was due to the Pediasure, not from the stress and pain following the surgery.

We have been giving Timmy Tylenol and Motrin to help with his pain. And Timmy has also been receiving a stress dose of his Cortef since the evening before surgery. But given all of the issues that we were seeing following surgery, we were afraid that by giving the pain medications we might somehow mask a temp that would indicate an infection. In my opinion, the stress dose of Cortef, the antibotic that was prescribed as a precautionary measure following surgery to try to prevent an infection and the Tamiflu that the pediatricain prescribed, because the prelimenary results in the office showed that Timmy had Influenzia A & B, is most likely the reason that Timmy's blood glucose levels have been elevated. Now that the Amoxil and Tamiflu have been discontinued, hopefully we will see Timmy's blood glucose levels start to return to normal.

I hope that when the rest of the results come back, they are normal as well. I hate to see my little man so sickly and not himself. I miss my smiling sunshine in the morning.

Just a note to self...When the on call pediatrician came in to the ER to see Timmy, he pointed out a red spot on Timmy's back, mid-upper right side near spine. I have never seen this before and am not sure what it is or what caused it. So I'll keep an eye on the red spot. Probably nothing, but can't hurt to follow up to make sure that it goes away.

Good Nite Timmy. Eskimo Kisses! MaMa Loves You!!!

Update & an invitation

Well, Timmy is 5 days post surgery. He really isn't feeling very well. We took him to the pediatrician on Thursday around noon, because he has this horrible smell coming from his mouth and trach. The smell is worse than what I describe as "garbage truck soup!" (The liquid that seeps from underneath a garbage truck) He really hasn't had an elevated temperature, only sometimes a low grade temperature 100.5 is the highest his temperature has gotten since late Tuesday evening. He also has had LOTS of yellow secretions coming from his nose. These secretions are draining into his mouth and airway. There is some kind of white patch on the back of Timmy's throat and tongue. His blood glucose levels are very high, 300-400mg/dl. Timmy is refusing to eat or drink orally. Thank goodness for the mic-key button, so that we are able to keep him hydrated. He will not swallow his saliva. He just lets it drool out of his mouth or we suction it out for him. Timmy hasn't been verbal. The most we can get out of him is a chuckle now and then.

The Doc took some cultures, but as of mid morning, the results of the cultures have not come back yet. Something is definately going on, but what? It is so not like Timmy not to want to eat/drink, laugh at us, and just want to nap off and on during the day.

We put several calls into Timmy's ENT (Dr. Zdanski), but neither he, a fellow/resident or his nurse who was suppose to have passed on the message in regards to our concerns NEVER called us back. Thank goodness we have Timmy's Endocrinologist (Dr. Ali), who is away attending a conference in Chicago, willing to help walk us through all of Timmy's high blood glucose issues. In my opinion, we have been giving Timmy an EXTREMELY large amount of insulin to cover his food carbohydrates and his blood glucose highs, sometimes up to almost 4.5u just to cover his carbs, where typically Timmy would receive about half of this amount.

I hate this "wait and see what grows" game we are playing. Yes, Timmy is on an antibotic (amoxil), which was prescribed as a preventive after his surgery on Monday. And Dr. Taylor, the pediatrician started him on Tamiflu, just in case we may be dealing with a flu bug. But in my opinion, the Amoxil isn't a broad spectrum antibotic and if something is brewing, we may not catch it in time, before Timmy gets REALLY sick! Hopefully even though tomorrow is Sunday, we will be able to find out the results of the cultures. You would think that after 72 hours, if there is anything growing there would be some kind of results..?

I just HATE to see Timmy looking so sickly. I miss his smile and hearing is contageous laughter! Come on "Mr. Chuckles" feel better soon! Your yuppie yougart is awaiting you!

Now, for some uplifting news......

We all have been invited back to NIH (National Institute of Health). They are doing clinical research on WAGR Syndrome and Other 11p Contiguous Gene Deletions: Clinical Characterization and Correlation with Genotype, in order to learn more about WAGR syndrome. They are hopeful that what they learn from this research, they will have a better understanding and will be able to provide better care for people with this condition. They need to study children and adults with aniridia to compare with children and adults who have WAGR syndrome. Being that we will be participating is a research project, all of our travel expenses, food and lodging will be paid for through federal grant money. So in a way, a free vacation for the family..... Hopefully the weather will be very nice and we will be able to find some time for sight seeing, this time.

Our family will be splitting up our part in the research project. Floyd and I will be attending NIH and taking part in the research project August 8th.-15th. We will return September 27th.-October 3rd, with Timmy, so that he can participate. We felt that this would work out better for our family, being that all of these test are pretty extensive. We will need to be able to focus all of our attention on Timmy so that we will be able to manage his diabetes. By splitting up the sessions, we will be able to guide the researchers in ways to adapt some of the tests so that they will be able to get a larger study from Timmy's part in the research. Here is a list of "some" of the tests that we will be asked to participate in.

In the first part of the study:
*
We will ask you and your parent about your health. We will also ask your regular doctors for records about your health. A doctor or a nurse will look at you and make some measurements.
*We will need to take some of your blood for our study. We will use the blood to study things that may affect your health. We will also use your blood to study your genes.
*We will ask you to give us a small amount of urine in a cup. We measure things in the urine that may affect your health.
*Your heartbeat will be measured by an EKG.

*Before arriving we will have to write down everything that we eat and drink for three days.
*The amount of water in our body will be measured by putting sticky patches, called electrodes, on your hand and foot and attaching wires to the electrodes.
*We will ask you to sit inside an egg-shaped capsule called a Bod Pod for a few minutes. The Bod Pod is a way of looking at your body shape.
*We will have an x-ray test, called a DEXA. This x-ray will take pictures of the muscle, bone, and fat in your body.
*We will have a MRI of our head and abdomen.
* We will have a resting metabolic rate test. A clear plastic helmet will be placed over our head and we will have to breathe normally for about 30 minutes.
*An IV will be placed in our arm and take a blood sample from the IV. After that, we will be given a shake to drink for breakfast. After we drink the shake, the nurse will draw blood several times from the IV for the next 3 hours.
*For lunch one day, we will go in a room with a buffet of different foods. We will be able to eat as much as we want of any of the foods and should eat until we are no longer hungry.
One morning, while we are fasting, A nurse will put a second IV in our arm and add some sugar to our blood. Afterwards, the nurse will take blood samples from the IV for the next 3 hours.
*We will have to put all of our urine into a special bag for 2 days while we are staying at NIH.
*Several times while we are staying at the NIH, we will be asked to put a piece of cotton in our mouth for two minutes. The cotton collects our saliva.
*We will be asked to do some tests where a small black box is put on our arm. The box will get hot or cold, and we will be asked to tell or press a button when you feel cold or hot and when it hurts. When it hurts, we will be asked to tell how much it hurts.
*We will be asked to do a test where we put our hand on a box that has a vibrating piece and tell when we can feel it buzzing.
*We will be asked to put our hand in a bucket of cold water and leave it in the bucket for as long as we can. While we have our hand in the water, we will be asked to tell if our hand hurts and how much it hurts.
*For one test, we will be given a booklet that has papers for us to scratch and then smell (like a scratch-and-sniff sticker). After we smell each paper, we will tell what it smelled like.
*We will be asked to taste several types of pudding and milk and to tell how much you like how they taste.
*We will have a visit with an eye doctor.
*We will be asked to wear headphones and respond to sounds you hear. We will have small metal disks, called electrodes, placed on our head and we will have to listen to more sounds.
*We will be asked to do some tests where electrodes will be placed on our arms and legs. A little bit of electricity will be run through our arm or leg to test our muscles. We will also have an EEG.
*We will meet with researchers and answer some questions to find out how we feel about ourself, and what our life is like. We may also be asked to answer questions using pencil and paper or do tasks with blocks or other objects.
*We will be asked to drink some special water, called "heavy water." It does not taste different from regular water. Seven days later, we will be asked give to provide some urine samples.

Sounds very interesting to me. I'm really looking forward to our visit and possible pow-wow with Dr. Muneke, Dr. Solomon and Dr. Hadley again. I have eye sight now. You guys are in real trouble! Let the question and answer sessions begin...

Update on Surgery

Timmy had surgery today to remove his tonsils and adnoids. Surgery went very well. He came through like a trooper! He isn't having much bleeding. And he isn't showing any signs of being in pain. We are giving him Tylenol with Codine every 4 hours and he is receiving a stress dose of Cortef to help with any stress. We will keep him home from school tomorrow just to give his little body an extra day to heal.

In 1 month Timmy will be having another surgery. This surgery will be the most important surgery of all. During this surgery Dr. Zdanski will be lasering Timmy's airway to remove scar tissue that has built up from the zillions of re-intubations that he had to undergo as a preemie in the NICU. One week following this surgery, Timmy will be hospitalized for a few days, while Dr. Z. removes Timmy's trach to see how he will do without the trach in place. If Timmy fails this test our only other option is to have Timmy to undergo yet another surgery. This surgery is very painful and stressful. Cartilege is removed from the ribs and used to build a larger airway. Being this surgery would be so hard on Timmy's little body, I don't know if we are willing to put him through that much pain and stress.

We love Timmy unconditionally with or without his trach. There are advantages as well as disadvantages of Timmy having a trach. With the trach we have an established airway if he should get really sick, which makes managing his airway on a ventilator easier. Doctors and the anesthesia team feel more comfortable about putting Timmy to sleep for surgeries with the established airway, due to Timmy's medical conditions. With the flu, cold or a stuffy nose Timmy doesn't have to work as hard to breathe. Some of the disadbantages of Timmy having a trach are; When we travel with Timmy we have to take along alot of equipment, suction machine, trach care supplies, suction catheters. There is also the extra supplies that are needed to manage Timmy's trach that we have to have a place to store so that they can be readily available when we need them. The biggest drawback is the fact that Timmy can't go swimming. Timmy LOVES to be in the water. He really enjoys his bathtime. And having him to never be able to experience the "real" thrill of being able to splash while in the water will be hard. Even without the surgery to re-build the airway, we can honestly say that we tried everything in reason to give Timmy the best possible chance to live life without a trach and feel good about our decision.

We received Timmy's MRI results back today as well. All of Timmy's abdominal organs look remarkable! The team at NIH and Timmy's Endocrinologist and Genetist all thought that the number one cause of Timmy's diabetes is caused by a malformed pancreas. We know that this isn't the case. We see Dr. Ali Calikogl0u (Endocrinologist) on May 5th. at this time we will discuss Dr. Ali possibly doing a pancreas biopsy, so that further testing can be done to "try" to find out the exact cause of Timmy's diabetes.

I would like to ask everyone to keep Timmy in your thoughts, that this surgery heals quickly and that the following surgery in 1 month works!

Surgeries and Procedures

Floyd has an eye doctor visit on Thursday with Dr.'s McCuen and Dr. Afshari. Dr. McCuen is a retina specialist. When Floyd saw Dr. Afshari in March she referred Floyd to Dr. McCuen, before she would even consider doing his cataract removal surgery. Dr. Afshari wanted Dr. McCuen's opinion as to whether it would be safe for Floyd to undergo a cataract removal suregery and to make sure that Floyd's retinas are attached and healthy. Dr. McCuen ordered several extensive eye test. And from the results of these tests and his examination of Floyd's eyes, Dr. McCuen has agreed that it is in Floyd's best interest to have the cataract removal surgery. He also agreed that if a problem should arise that he is willing to step in and offer assistance as needed. Dr. Afshari upon reexamining Floyd had her secretary to go ahead and schedule Floyd's cataract removal surgery for May 19th. Pre-Op is scheduled for May 18th.

Boy this is gonna be a busy week of eye surgeries. Timmy's surgery to replace his eye conformers is scheduled for May 22nd. with Pre-op on May 21st.

Timmy had his abdominal MRI yesterday. We will pick up a copy of the MRI and hopefully a full report on Monday April 27th. We have been waiting for this MRI to be scheduled since late December. We are really curious to know if what the Dr.'s suspect about Timmy's pancreas being malformed is correct. The Dr.'s seem to "think" that if the pancreas is malformed, this is the cause of Timmy's diabetes. Timmy has Down Syndrome and he has none of the typical malformation of his heart, kidneys, and other organs like most children with Down's. So we are anxiously awaiting the results!

Timmy has his 2nd of hopefully 3 surgeries that will be needed to remove his trach. On Monday, we aren't exactly sure what Dr. Zdanski will be doing. Dr. Zdanski was waiting on the results of the PH probe test that Timmy had on March 26th, before he would make any final decisions. The PH probe results showed minimal reflux, without his medications. So hopefully Dr. Z will remove both the tonsils and adnoids or one of the above and laser the airway during this surgery. And in a month follow up with the removal of the other and do a scope to check to make sure everything is healing properly. I feel that if both the tonsils and adnoids are removed at the same time, this may be very stressful for Timmy. But on the other hand, Timmy is a very strong and tough little boy. He has been able to handle much more and came out unscaved. So we will just have to see what Monday has to offer.

Easter-A Trip Back In Time

I was looking through some old pictures of the kids last night and came across these Easter pictures. I thought that this would be a good time to take a trip back in time to see just how much the kids have changed over the years.

Emily and Timmy Easter of 2008.

Emily is almost 3 years old and

Timmy is 4 years old.

This is Emily's 1st. Easter picture.

This picture was taken in 2006. Emily

was 8 months old. Isn't she ADORABLE

In the Bunny Ears?!

Timmy's 2nd Easter picture.

This picture was taken in

2005. Timmy was almost

18 months old. He STILL LOVES

his bunny. The bunny's name is

Scratchy Bunny. He also LOVES

birds and frogs.

Zachary, Timmy and Emily's

half brother. This picture is a school

picture that was taken in the Spring

of 2007. Zachary was 11 years old.

This Easter we didn't do much. Emily attended church with her Aunt Angie and cousin Tiffany. After church Emily and Timmy helped me to dye boiled eggs and decorate them with stickers. We bought some really cool eggs that talk, to make Easter egg hunting more enjoyable for Timmy. The eggs were a bit pricey $5.00 each. They came in 6 different bright colors. Merry, Timmy's home health nurse and I split the cost, so we were able to buy all 6. At least, these eggs can be used year after year. So we should be able to get our monies worth from the use. We gave the kids an egg hunt with the talking eggs. The eggs were a sure hit with Emily. PaPa ended up having to hide the eggs once more just so Emily could have her very own egg hunt. She really enjoyed being able to follow the sound of the egg talking, rather than just looking for the eggs. Timmy thought that the talking eggs were funny. Timmy would laugh every time he would hear one of the eggs make a sound. We also made up a small Easter basket for Timmy and Emily. Timmy's basket had a UNC basketball outfit, a vibrating baseball with bunny ears that plays "Take Me Out To The Ball Game" a wind-up egg and some pop rocks candy. Emily's basket was a wicker basket with a hat covering the bottom and sides of the basket. He basket contained some candy, bubble solution, sunglasses and lip gloss. I bought Zachary 2 shirts and 2 pairs of shorts. I've been informed that 13 year olds no longer believe in the Easter Bunny! Hmmm, that is funny, cause the same 13 year old swears that he still believes in Santa!

Tour of Kindergarten Classroom

We went today to take a tour of the year round school that Timmy will be attending come July 21st. We got to met the teacher assistants. Unfortunately, Mrs. Bishop (special education teacher) wasn't there. She was at home taking care of a very sick little one. Hopefully we can reschedule a visit at a later date so that Timmy and her can meet before school starts.

The playground is very nice. The best part is that it has several types of adaptive swings. There is also a courtyard off of the classroom, which has raised flower beds and sandboxes for the children to play and be able to help grow flowers or other plants.

I like the changing area. It is nicer (Ok, ALOT nicer), than the one at JC Roe, Timmy's current Pre-K school. Codington's changing area has a very nice changing table that can be easily raised or lowered. There is a washing machine that the teacher and assistants use to wash the children's bibs, blankets or any clothing that may have gotten messy during the day. The school system even supplies the wipes! This took us by surprise, being that the school system isn't doing that for Timmy this year.

The classroom is very spacious. There is plenty of room to push Timmy around the classroom while he is in his KidKart without running into furniture or having to rearrange furniture. There is a treadmill, exercise mats, walker, exercise ball, and I can't remember what other PT equipment was there in the classroom. There was 3 computers that can be adapted with a switch and all have voice output. I can't remember the name of the piece of equipment, but it is a large touch screen projector system, that the teacher uses to get the children involved in learning. It can be used to display the daily schedule, teach numbers and letters, days of the week and months of the year. Movies can also be shown on the screen. This is only a few things that the screen can be used for. It too also has voice output. How Cool is that?!?

I spoke with the on site speech teacher today. She is going to talk to the approperate people to get the ball rolling, so that we can try to have a FM trainer in place possibly by the time school starts in July, for Timmy's use.

I really think that as Timmy's parent, Timmy will excel as long as the teacher, OT, PT and the Speech teacher are willing to work together and follow the IEP goals that have been set for Timmy, for the upcoming year.

Oh yeah, there really isn't a student to teacher ratio for this class, but for this year, there are 6 students to 1 teacher and 2 assistants. This can change from year to year though. I'm really looking forward to volunteering at Timmy's school! Wow, if Emily gets accepted into the Pre-K program, I guess my life will comprise of volunteer hours! Oh Boy! Good thing I really liked school as a young child/teenager!

ENT and Audiology results

I put in a call to Timmy's ENT, Dr. Zdanski and Pat Rouche. Dr. Zandski's nurse called me back. She stated that the Ph Probe test that was done on March showed only minimal reflux, which is normal being that Timmy had been off of his daily dose of Prevacid for almost a week. GI suggested the only thing that needed to be done was to continue Timmy's current dose of Prevacid and monitor him for signs of reflux. Timmy is scheduled for surgery on April 27th to have his adnoids and tonsils removed. We plan on asking Dr. Z to take a look to see if Timmy's esophagus still looks inflammed.

We spoke with Pat Rouche on April 7th when Timmy had his audiology appointment. We discussed a repeat ABR and the use of an FM trainer for Timmy. Mrs. Rouche returned my call as well. She spoke with Dr. Z and they both feel that the results from the ABR that was preformed in December 2008 was of a good quality and a repeat ABR isn't necessary at this time. Mrs. Rouche also feels that the use of a FM trainer for Timmy is a good idea, but she is against the use of the type that uses an earpiece. She feels that being the earpiece would block the sounds that would enter Timmy's "good" ear, this would hender him ability to learn. She also feels that by using the earpiece and Timmy not being able to tell us if the level is too loud, we may be over amphifying the sounds entering the "good." This in turn could do damage to him eardrum. Mrs. Rouche is willing to do what she can to help us get a field sound system, which is a speaker type FM trainer, placed in Timmy's kindergarten classroom for next year. I asked Mrs. Rouche if Timmy was a canidate for a cochlear implant. She said No. She went on to explain that being Timmy has normal hearing in his left ear and the way that the cochlear implant amphifies sound and the way a person hears the sound. This would cause a disturbance for Timmy and may be confusing to him and harder for his brain to process what he is actually hearing. We will continue to monitor Timmy's hearing and "try" the field sound system in school for next year to see how Timmy does. If the field sound system doesn't work for Timmy, we will discuss other options with Mrs. Rouche.

Audiology Visit

Timmy had an audiology visit on Tuesday. We discussed the different types of FM trainers, the pros and cons and how one may benefit Timmy. A FM trainer is an assistive listening device, which brings the voice of an individual who is talk or a sound source forward, while decreasing the background noises, which may confuse the listener.

Timmy has normal hearing in his left ear and he is profound in his right ear. I feel that the use of a FM trainer would benefit Timmy tremendously, being that he will be starting year round kindergarten in late July. Timmy will be in a special education class with children of varying degrees of disabilities. By the use of a FM trainer Timmy will be able to hear the teacher more clearly, even when she can't be close by his side and will aid in his ability to participate in group activities. I also feel that the use of the FM trainer would benefit Timmy during one on one speech or other therapies.

When Timmy was wearing his hearing aid, I noticed better speech clarity and more vocalization throughout the day. Without his hearing aid, Timmy doesn't talk as clearly. When placed near sources of sound i.e. a radio, t.v. Timmy doesn't respond in the same sense that he would when he was wearing his hearing aid.

The audiologist tries to do a behavioral audiotory hearing assessment, with the use of different sound tones at different sound levels and her speaking to Timmy. I honestly couldn't say that Timmy's responses were consistent with what he "may" have heard. Timmy was in the process of taking a poo-poo. I wish I had thought of the idea of me, dad or Timmy's nurse being the one speaking to him, to see what kind of response we might have gotten. As the saying goes, we learn from our mistakes. Next time I will suggest this to the audiologist.

Timmy is scheduled for surgery on April 27th to have his adnoids and tonsils removed. The audiologist agreed to talk to Dr. Zdanski to see if he would allow her or someone else to do a repeat ABR (Audiotory Brainstem Response). Timmy has only had 2 ABR's which show normal hearing in his left ear, one at about 7 months old and the most recent on in December 3rd 2008. The audiologist agreed with me that another ABR would be a good idea. If the audiologist could see two consecutive ABR's which show normal hearing in his left ear she and I would feel more comfortable, being the behavioral audiotory hearing assessment did not have positive results. Once the audiologist get the results of another ABR, we will talk further about the FM trainer for Timmy.

I perfer the FM trainer, which works along with the hearing aids. The audiologist feels that he field system would benefit Timmy more. The field system is where a speaker is placed near Timmy and the sound source is ampified over the speaker.

I will be contacting the audiologist, which works with the public school system to see what I need to do to have Timmy assessed for the use of a FM trainer, which the public school system will provide. We will also be checking with our insurance to see if it will pay for a personal FM trainer to use at home.

Change in surgery strategy

Timmy had the 1st of several surgeries that is needed to possible prepare him for having his trach removed.

The original plan was to do a Ph Probe study to check for possible reflux, re-open the nasal passages and remove the tonsils. Dr. Zdanski decided that being that the Ph Probe had to remain in place for 24 hours, that removing the tonsils wasn't in Timmy's best interest at this time. So Timmy had his nasal passages re-opened and the Ph Probe placed. Timmy was hospitalized over night for monitoring.

Timmy faired well from surgery. He had some bleeding from his nose, which is expected. By morning there wasn't any "fresh" blood seen. He required a few doses of Tylenol with codine for pain management. By morning Timmy was all smiles, showing no signs of pain or stress.

I have to send out a "We're Proud of You!' to the student nurse anesthesist that helped to take care of Timmy. I wish I could remember her name. What she did took us all by surprise, that no one caught her name. She came into the room where we were waiting to go back for surgery. She lets us know that the OR was ready for Timmy and that she was going to carry him back. Timmy was sitting in a reclining chair. The student nurse anesthesist gets down to Timmy's level, takes his hands into hers, tells Timmy her name and that she was going to pick him up. Timmy has had MANY doctor visits and hospitalizations and NO OTHER nurse or Doctor had ever taken this approach. I was so impressed that I made sure that she knew that she had done exactly what a blind child or their parent would have expected her to do. Now if her excellent bedside manner were contageous!

Genetic Test Results

Well, after 5 years of a misdiagnosis, we finally have a true diagnosis for all of Timmy's medical conditions.

Timmy has inherited 2 mutated genes, one from me and one from his dad. The PAX6 gene is a cause for all of this. The PAX6 gene is linked to aniridia, which is an eye condition where a person is born with partial or absence of the iris (color of the eye). It had also been found to cause central nervous system defects, glucose intolerance, microphthalmia/anophthalmia (being born with small or no eyes) and brain malformations.

For me, the PAX6 gene mutation is found within the R240X link. And for Floyd, the PAX6 gene mutation is found within the R38W link. Timmy inherited both of these 2 mutated genes. All of this gene, chromosome, codon and exon stuff is so confusing to me. So I'm trying to explain this to the best of my ability.

Being that Timmy is the only surviving person with this gene mutation and all of the other associated medical conditions, there is no medical syndrome name been given to the condition. The only other person to have had the same PAX6 gene mutation, but different part of the gene was affected, was a child from Finland. Unfortunately this child did not survive.

I have typed an email to Dr. Ben Solomon, from NIH, to see if possible he might be able to give me more info about the othe child and possibly put us in contact with the other family.

At this point, I have mixed emotions. I feel relieved that we finally know the exact cause of Timmy's medical conditions. But on the other hand I feel alone and scared. There isn't just one place to turn for information or support. There is so little known about this, that the doctors can't even tell us what the future holds for Timmy. As a parent, upon finding out the genetic test results, you start to question whether medically and acedemically if we are doing everything possible and in his best interest to help Timmy? Medically, should we be trying different strategies or should we or should we not be having "x" procedure done? Acedemically, is there a different or better way that we should be teaching Timmy to help him learn? With his therapies, are we pushing him hard enough? Should we be using different techniques to help with his progress in PT, OT, ST? I guess what I'm trying to say is what is the norm for Timmy? Where does he fit in stastically?

Even though I have all of these questions, it isn't going to change the quality or type of care that Timmy receives. Timmy is my life, my sunshine and my morning cup of coffee. Without his smile and laugh every morning, I don't know how I would ever be able to make it through the day!

Also Timmy has pre-op tomorrow with surgery on Thursday, at UNC with Dr. Zdanski (ENT). This surgery is to again repair his coanal atresia and remove his adnoids. This is the first of two surgeries to prepare Timmy for the possibility of having his trach rremoved. During surgery Timmy will also have a PH-probe to see if he is having reflux. In my opinion, Timmy's nissen fundoplication procedure that he had 2 years ago has failed and Timmy is having very mild reflux. Timmy is having all of the classic symptoms that he had 2 years ago before the nissen, drooling, sticking his fingers far back into his mouth, spitting up, and the smell of acid in his drool. Hopefully something good will come out of these procedures.

Five Years Ago

Happy St. Patrick's Day!!!

It really doesn't seem like 5 years. But five years ago, to the day, our 4 1/2 month stay in the hospital following Timmy's birth came to an end. Timmy was discharged from the NICU Transition Unit of New Hanover Regional Medical Center at approximately 8:30PM. The hospitals protocol is that every patient whom is discharged, is to be taken downstairs in a wheelchair. We refused to let this happen. I walked into that hospital on October 30th 2003. I walked into that hospital several times a day following my discharge to visit Timmy. So after 4 1/2 months, we were going to walk out of the hospital carrying Timmy in our arms, with our heads held high.

Timmy's surviving the emergency C-Section was a miracle. Him surviving the first critical 72 hours of life, was a miracle. Him overcoming many complex health issues i.e. diagnosed kidney failure, failure to thrive, and being able to breathe without the aide of a ventilator. At about 3 1/2 months, on January 21st. 2004, Timmy was airlifted to Duke University Medical Center. It was at this time that Timmy was given a tracheostomy. We had been told that Timmy would never be able to drink from a bottle, so him feeding from a bottle, and most importantly him surviving to the point of being healthy enough to be able to be discharged from the hospital, was truly a miracle.

The day that Timmy was to be discharged was a very long, trying, stressful, and scary day. We were told early morning that we would be going home very soon. Well as the minutes of the day slowly slipped by it was beginning to seem that our discharge would be postponed yet again for some unkonwn reason. Each time Timmy's Neonatologist passed us in the hallway or would come into Timmy's room he would drill us with different senarios of situation that could possibly happen once we got Timmy home and wanted to know what we would do in each situation. We had been helping the NICU staff take care of Timmy from day one, changing diapers, taking temperatures, bathing him, suction his trach and feeding him. We even had experience with having to change Timmy's trach. In the hospital, a respiratory therapist is suppose to be at the bedside when a baby/child's trach is being changed. Well after Timmy got his trach, when it came time for his trach to be changed, we or the nurses couldn't get a respiratory therapist to come to assist. So dad and I along with a nurse as our backup, changed Timmy's trach.

Most new parents worry about if the baby is too hot/cold, if the car seat is installed properly, how much/how often to feed or if they have all of the necessary needed supplies at home. But we were more worried about if we couold remember how to fill Timmy's portable liquid oxygen tank, how to use/reset his apnea and pulse oximeter monitors, how to figure insulin dosages and how to cope in general once we were on our own, without a Registered nurse only a yell away!

Our first night at home we didn't have any nursing help with Timmy. We were on our own! Neither dad or I slept at all that night. I was up checking on Timmy every few minutes, just to make sure that he was still breathing. I was scared to put my trust solely into the monitor/s alarms to let me know that something was wrong. Besides, I had been taught while Timmy was in the NICU not to solely rely on the alarms. Instead look at Timmy and assess him to see if the monitor alarms are correct.

It took many months before we would even let Timmy's Home Health Nurses do most if not all of his care. I had 4 1/2 months of parenting to make up for and it took me awhile before I felt comfortable placing my son's well being in the hands of a strangeer.

It is hard to believe that when Timmy came home he weighed 7lbs. 2oz. Now he weighs approximately 32lbs. and is approximately 37ins tall!

Even though Timmy has developmental delays, over the past 5 years, he has reached many inchstones, that we were told from the beginning that Timmy would never be able to accomplish. I'm so PROUD of Timmy!

Not having any luck.....

We just aren't having any luck with Timmy being able to keep the comformer(s) in his eyes. Yesterday morning, the comformer that was in his right eye came out. It was a given that this was going to happen though. From day 1 the right eye had been very red, inflammed and swollen. Timmy needing Tylenol with Codine to help ease the pain was another clue. Usually Motrin or Children's Tylenol helps to ease any discomfort. We did everything that we possibly could to prevent this from happeneing. We used warm compresses, cold compresses, we gave him Motrin to try to reduce the swelling and we even used the Tobradex eye ointment 4 times per day instead of the 2 times prescribed to try to help with the inflammation. I'm not sure if the comformer coming out was due to his body being sensitive to the skin glue that was used to hold the comformer in place or possibly some other irritant that got into the eye during surgery. Anyway, this morning the right eye looks 90% better. It is still a little red and swollen. I just keep asking myself "Is putting Timmy through this really worth it?" We have been told that if we don't do something that his face as it grows will be deformed because the bones around the eye sockets will not grow correctly.? And that this could also play a part in his nasal passages closing, because the way the bones in the face would grow, it would put pressure on his nose.? If this is true, we "have" to continue to go through with the surgeries, if we ever want Timmy's trach to be removed. Timmy's left eye looks wonderful! Dad has a call into Dr. Richard. Timmy has 2 week post-op follow up appointment tomorrow. Usually if Timmy isn't having any issues Dr. Richard doesn't need to see him. Tomorrows appointment was scheduled because of the right eye being so irritated, red and swollen. Now that the comformer has come out, we want to know if he still wants to see Timmy or just schedule surgery to replace the comformer.?

Field Trip

Timmy's Pre-K school had a field trip to the Police Department today. The Police Department was holding their 4th annual Fun Day. Timmy had a blast! I think that he enjoyed the bumpy bus ride to and from the Police Department the best though. The children all had the opportunity to see drug dogs in action, police horses, motorcycle patrol, squad cars, and SABLE (the helicopter that is used to assist in patrol). I was a bit disappointed. I asked one of the policemen if he would sit with Timmy on the motorcycle with it started or at least let him hear the siren. I was told "no" because it may upset some of the other children. I can understand this, but Timmy can't see. He has to use his ears as his eyes. Just using his hands to "feel" the motorcycle doesn't mean much to a blind child. Being that Timmy is disabled, the policemen were nice enough though to let Timmy's class up close to the motorcycle and the horse, where as the other children were not allowed to get close. Timmy got to sit inside of the helicopter and play with the controls. Sit inside of a police car. Hear the drug dogs barking, that were confined inside one of the police cars. And pet one of the horses. This was Timmy's very first field trips and outing with a large group of classmates.

Here are some pictures.

Your Cross

Merry (one of Timmy's home health nurses) and I took Timmy to Wal-Mart last night to buy a bike helmet. Timmy received a bike for Christmas. The weather has been so cold that we haven't been able to take Timmy outside to ride. The weather today (Saturday) and tomorrow is suppose to be gorgeous, mid to upper 70's and sunny.

Timmy hates to go shopping. So us asking Timmy to cooperate and tolerate us trying on bike helmets was like asking for the moon. After us trying on what seemed like a million helmets to Timmy, he started getting very angry with us and crying. So we hurriedly chose a helmet and went on our way to finish shopping. Being that Timmy has microcephaly (a small head) we were heading to the craft department to see if we could find some foam or something else to use to stuff the helmet so that it would better fit Timmy's head.

Timmy's cries of anger caught the attention of one of Wal-Mart's employee's. We explained that Timmy hates shopping and besides our outing had thrown off his regular night time routine. The employee questioned us about Timmy's eyes being swollen and bruised. We explained that Timmy had had surgery a week ago. And that he was born without any eyes. The employee started telling us about her daughter's friend, who just had a baby who was born without a rectum and his intestines outside of his body and all of the issues that the baby and his parents have had/are having to go through.

Once again I was shown that even though things in our life with Timmy may seem hectic and overwhelming, there is always someone else out there who is having to deal with much greater issues.

So here is a poem that I came across accidently today. I thought that I wouold share.

~ ~ Your Cross ~ ~
The young man was at the end of his rope. Seeing no way out, he dropped to his knees in prayer. "Lord, I can't go on," he said. "I have too heavy a cross to bear."

The Lord replied, "My son, if you can't bear its weight, just place your cross inside this room. Then, open that other door and pick out any cross you wish."

The man was filled with relief. "Thank you, Lord," he sighed, and he did as he was told. Upon entering the other door, he saw many crosses, some so large the tops were not visible. Then, he spotted a tiny cross leaning against a far wall. "I'd like that one, Lord," he whispered.

The Lord replied, "My son, that is the cross you just brought in."

When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more blessed than you imagined. ~Author Unknown

Playing Catch-Up

It has been a while since I have updated, sorry. Alot has happened, but I will only reflect on the highlights of the past 6 weeks.

The reason for the lapse in updating the site is because my vision had gotten too bad and I could no longer read the computer. My keratoprosthesis (artificial cornea and lens implant) surgery had originally been scheduled for Feb. 9th, but the surgery had to be rescheduled, due to an emergency case. I had my keratoprothesis surgery on Feb. 16th. I'm happy to post that my surgery was a success!!!!! Honestly, I feel that this procedure has a better outcome compared to my donor cornea transplant in April 2001.

Unfortunaltely the Ophthalmologist at NIH have decided that they are not able to remove Floyd's cataract. The Doctors feel that his eye condition is above their abilities and that the surgery would be too risky. Floyd has applied for a supplimental insurance. Once he receives his insurance card, we will be on the hunt for a Ophthalmologist who will be willing to take the risk and preform the much needed cataract surgery for Floyd. I have always said, "There are thousands upon thousands of Doctors in this world. You may come across many thousands of Doctors who will refuse to help. But somewhere in this large world, there is a caring Doctor who will be willing to help. You just have to be willing to take the time to search." Hopefully out journey for an Ophthalmologist will be short.

As of Feb. 7th Emily is FINALLY COMPLETELY POTTY TRAINED! WOOHOO!!!!!! It took what seemed like forever to get her to go poop in the potty. She kept saying that she was scared to go poop in the potty. When asked why she was scared, she was unable to tell us. So I decided that I had had enough of her "knowing" when she had to go. She had all of the tell-tale signs of being ready. Emily would tell us that she needed to go poop. She would go put on a Pull-Up when she had to go or she would hold her poop until bedtime, when we would put on a Pull-Up so that she wouldn't wet the bed. She would also announce when she had finished pooping and needed her Pull-Up changed. Despite my dad accusing us of abusing her and threatening to call the police and my mom coming running next door to see exactly what we were doing to Emily. I was adament that Emily was not going to poop in her Pull-Up anymore. It was time that she faced her fear and overcome her fear. I sat in the bathroom with her while she sat on the toilet. We looked at books together. When she just couldn't hold her poop anymore and she finally went in the toilet, Emily was both excited and surprised that she had gone and nothing bad had happened to her. She had finally earned her rewards. Daddy had promised to put her T.V. back into her room when she would go, Merry promised to take her to the beauty polar and Dotty promised to bring her dog to visit Emily. Emily now insist that someone come look each time that she goes. She is still so proud of herself.

We have new surgery dates for Timmy surgeries. The 1st surgery has been rescheduled for March 26th. At this time Dr. Z will be re-opening Timmy's nasal passages and removing his tonsils. The 2nd surgery has been rescheduled for April 25th. (? I'm waiting for a mailing to comfirm the actual dates.) During this surgery Dr. Z will be lasering Timmy's airway just above his trach to remove scar tissue and remove his adnoids. On May 7th Dr. Z will do a scope of Timmy's upper and lower airways to make sure everything looks good. If things look good, Dr. Z will possibly try removing Timmy's trach.

Timmy saw his neurologist on Feb. 26th. Dr. Greenwood was very impressed that Timmy is now able to sit for very long periods of time unsupported. Eight months ago Timmy was sitting for only short periods of time unsupported. We discussed the "spells" that Timmy has ocasionally. We have come to the conclusion that most likely the "spells" are only what we have termed Timmy-tantrums. When Timmy has one of the "spells" his face turns red, his arms go out to the side, his entire body stiffens, he draws up his legs and he becomes vocal, with sounds as if he is in pain (uh,uh,uh). The vocalization and stiffening immediately disappear once he is picked up and held. We also discussed Dr. Greenwood scheduling an abdomenal MRI. Dr. Muenke and staff at NIH are very interested in an MRI of Timmy's pancreas. Dr. Greenwood is suppose to be getting back to us with the date for the MRi.

Timmy had surgery on Feb. 27th with Dr. Richard to replace the comformers in his eyes. The surgery was very stressful and painful than normal for Timmy. Dr. Richard had to remove some tissue from the eye sockets, so that the comformers would fit. He also slit each eyelid to extend the eyelid. Stitches were place in the eyelids where they were slit and extended. In the left eye triple the size of the previous comformer was placed. And in the right eye double the size of the previous comformer was placed. Timmy's pain level this time required us to make a phone call to the Doc on call, so that a stronger narcotic could be called in to Timmy's pharmacy. Regular Tylenol just wasn't helping the pain. Timmy's eyes also bled more than from previous surgeries and his eyes are more bruised.

Today Timmy is feeling much better. He is laughing and responding approperately to his favorite toys and songs. His blood glucose levels are elevated. This is normal following surgery. But we are troubleshooting just to make sure it isn't a bad insulin site or insulin issue. Hopefully the blood glucose levels will return to their pre-surgery levels soon.

Our Little CNA

Why is it when our kids are doing something cute the camera is out of reach and the video recorder's battery is dead?

Emily is our little CNA in training for her LPN. She is working very hard toward her nursing degree at the tender age of 3 years old. Emily loves to help take care of her brother Timmy. She helps us take his blood glucose levels, listen to his heart, lungs and stomach. She even tries to feed and bathe him.

We have used the same drug store for the past 4 1/2 years to get Timmy's diabetic supplies and medications. The employees have been told just how dedicated Emily is to trying to help take care of her brother. Earlier this month one of the employees cleaned up an old glucose meter and gave it to Emily to play with.

The other morning Emily got bored watching cartoons. She announces that she is going to go play "tea party." This is another of Emily's favorite pass-times. She can spend hours playing "tea party" with her dolls. So Emily goes into her room. Every once in a while I hear her doll say "mama." I don't hear Emily say anything, but I do hear her shuffling with toys. So I think nothing of her being qfuiet, not yet anyway. Ocasionally the doll says "mama." Nothing from Emily. So after about 15 mintues of hearing nothing from Emily I go in to check on her. Usually when Emily gets quiet this is a good sign that she is into something that she isn't supose to be. I never saw or heard her come out of her room. And she has been known to be quiet for long periods of time when playing "tea party." After hearing the doll say "mama' two dozen times, but nothing from Emily. I go in to check on her. What did I see? Emily sitting in the floor with her glucose meter and stethoscope laying on the floor next to her. The doll says "mama." The doll is lying face down with its head turned to the side and its butt in the air. The doll says "mama." After using four enemas on the doll, Emily has smeared Desitine diaper rash cream on the dolls butt. The doll says "mama." When I walk into the room, Emily is poised with Timmy's themometer, ready to take the dolls rectal temperature! I couldn't help but to laugh. I hope this interest continues, because she will make an excellant nurse one day!

Surgery Date

My eye surgery has been scheduled for Feb. 9th. I saw Dr. McKinnon on Tuesday. He feels that my eye pressure is ok for Dr. Afshari and himself to proceed with my surgery. The pressure was 12 in each eye. Dr. McKinnon will be placing drain tubes in my eyes to help relieve the eye pressure due to the glaucoma. During the same surgery Dr. Afshari will be doing my cornea transplant. She will be using a plastic cornea rather than a donor cornea. The plastic cornea has the benefits of the body not rejecting the cornea and with the plastic cornea the cornea will not become hazey like with a donor cornea. The major drawback to the plastic cornea is that their is a very high risk of infection. So I will have to take antibotic eye drops for the rest of my life. This is a small price to pay to finally have clear vision once again.

Surgery Postponed

My eye surgery has been postponed for now. My cornea specialist wants me to have a visit with a glaucoma specialist just to make sure that my eye pressure is ok for surgery. I have an appointment with Dr. McKennon (glaucoma specialist) on Tuesday, Jan 13th. We will see where things go after that visit.

Happy New Year!

HAPPY NEW YEAR!!!!! It is hard to believe that another new year is upon us.

Here are a couple of Christmas pictures of Emily taken at Preschool. Unfortunately we were unable to have our own professional portraits done for Christmas. Our schedule was just too full this year.