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

Thursday, May 28, 2009

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......

Friday, May 22, 2009

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???

Wednesday, May 20, 2009

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!

Sunday, May 10, 2009

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!!!

Thursday, May 7, 2009

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!

Sunday, May 3, 2009

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!!!

Saturday, May 2, 2009

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...