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.

What A Week!

Wow, What A Week!

I would first like to take a moment to Thank the staff and volunteers of the Children's Inn, for making our stay such a pleasant one. The little trinkets that are left in the family's mailboxes each day for the children are very much appreciated. It is a good way to let the kids know that someone else is thinking of them and that someone else cares. The highlight of Timmy's stay was being able to see Santa and have hands on time with a police motorcycle. This is a memory that you helped create, which we will never forget. THANK YOU!


Thank You to Ziggy (Joan) for putting up with our many phone calls with numerous questions, for putting the financial assistance into place, which made this trip possible for us, getting our schedules for the week together ahead of time, our travel arrangements in place and just for helping to make things go as smoothly as they did. Also a BIG Thank You to Dr. Muenke, Dr. Hadley and "Doogie Houser" (Sorry I can't remember your real name) He is from South America/Columbia. And he is 19 years old. He will be returning to South America in Janurary to get his medical liscense and Dr. Solomon. Thank You to all for taking the time to talk to us and explain things and for answering my many questions to the best of your ability. It was truly a pleasre to have had the chance to meet all of you. Oh yeah, Dr. Muenke and Dr. Solomon, I have MORE questions. So here soon I will be typing up an e-mail or giving you a call. Dr. Solomon, I promise NOT to call your cell or home phone at 3am!

On Monday Timmy had an echocardiogram. Structurally the heart looks great, except for a slight enlargement in one of the ventricals in the right side of the heart. We were told that this shouldn't pose a problem, but to follow up with a cardiologist sometime in the futue, so that he can keep an eye on things.

On Tuesday we all had appointments with the genetic eye Doctor. Dr. Brookes felt that I should be seen by Dr. Holland in Ohio before going through with the cornea transplant surgery at Duke. I feel that with our finances like they are, it will be ok to have the second choice of Doctors do the surgery. We also found out that Floyd "may" have a rare type of Aniridia, a maturing cataract on his right eye which needs to be removed and a premature size cornea and lens in his right eye. Dr Brookes and several other Doctors are consulting. They may be doing eye surgery on Floyd in the near future to remove the cataract and replace the cornea and lens in his right eye. Floyd was given a prescription for a pair of glasses which does not have the myopic disc, for him to try before his surgery. The glasses can be purchased online for less than $100. We also had medical photography taken, which will be used to look for similarities in appearances in people with cases like ours. We all had our blood brawn again for future use if necessary.

On Wednesday Timmy had OT (Occupational Therapy), PT (Physical Therapy) and Rehab Medicine consults. OT felt that it would be in Timmy's best interest if we could get the home OT and school OT to communicate, so that everyone is on the same page. She also felt that the activities that we have been working on with Timmy are the correct ones. And we need to work more on trying to get Timmy to reach out for things and to do more exploring of his surroundings. PT was amazed at Timmy's physical abilities. Timmy is able to sit unsupported for up to 10 minutes. He can hold himself on hands and knees for 3 seconds. He can roll from his back to his stomach. He can go from sit to stnad with some assistance. He can stand with moderate support. She suggested that we continue doing all of the same exercises with Timmy. She also suggested that we not use the stander as much, but rather stand him up at a table or the sofa and help him side step along the edge. She feels that Timmy has a lot of potential and may someday, with continued help learn to walk, even with the aid of a walker. Rehab Medicine Doctor gave us some information on a local Rehab Doctor to follow up with locally. We will do this after the holidays. He was also impressed at Timmy's physical abilities. We saw Endocrinology today. We were told that the cause of Timmy's diabetes is unknown. There are a few genes associated with diabetes that they will be testing Timmy's blood for. We were told that there may be a possibility that in the future Timmy may not need any insulin, if what they suspect is going on is true. I'm definately not holding my breathe on this one! We mentioned what we have observed in regards to when we give Timmy large amounts of protein in a meal and how his blood glucose levels go up. Compared to when Timmy is hiven a meal with a lot of carbs and treated with insulin approperately and his blood glucose levels are normal the next time they are checked. The Endocrinologist didn't have an explaination as to why this happens, but she did find it very interesting. She was also amazed at just how well we manage Timmy's blood glucose levels and keep them within normal range. We were so happy to have had the opportunity to speak with a nutritionist. We have consulted a couple local ones and have been told that Timmy is underweight and short or overweight for his height. The nutritionist was nice enough to answer all of our questions and address our concerns. The nutritionist and Endocrinologist consulted together and they both came to the same conclusion. TIMMY IS PERFECT for his weight and height! Yes, Timmy is small for his age, but when plotted on a growth chart, his BMI (Body Mass Index) is right in the middle of the chart. We were told that Timmy needs no more than 850-1,000 calories a day. And that us giving Timmy Enfamil baby formula on the days that we travel out of town to Doctor visits is perfectly ok. The nutritionist pointed out that no one eats a well balanced diet every single day. She felt that what we were feeding Timmy is perfectly ok.

On Thursday Timmy had ST (Speech Therapy) consult. The Speech Therapist feels that we need to stop focusing so much on feeding Timmy and trying to get him to chew. She feels that being Timmy is verbal, we should be working more on him saying words, recognizing objects and different communication skills. She also recommended that we check with our ENT (Ear Nose Throat) Doctor or Audiologist about a FM Trainer for Timmy. The FM Trainer would help enhance sounds, so that Timmy can hear them better. We mentioned that we have been working with Timmy on drinking from a cup, but haven't been able to find a cup with large enough handles for Timmy to grasp. The ST gave us a cup for Timmy that works great! The ST made Timmy mad though when she placed small pieces of fruit loops and peanut butter into his mouth. It took HOURS before he would speak to anyone! Later in the day Timmy had an abdomenal ultrasound. Everything looked great. There were no abnormalities seen. Even the thought that Timmy's diabetes may be due to a malformed pancreas was unfounded. Timmy's pancreas, the part that could be viewed via ultrasound, looked normal. Timmy had a visit with Neurology today as well. The Neurologist pointed out that Timmy's brain malformation did not fit into any of the 4 classifications of Holoprosencephaly. At this point there is no proper name for Timmy's brain condition. As for "How" Timmy is able to do the things that he does, they are unsure. Whether Timmy uses deep brain structures to do the things that he does, no one really knows. The Neurologist wasn't able to explain "why" Timmy doesn't have DI (Diabetes Insipidus) This is a form a diabetes which affects the sodium levels in the body. Or why Timmy doesn't have a seizure disorder due to his brain malformation. We were told that it is still possible for Timmy to develop a seizure disorder, but being that he hasn't had any seizures to this point, the likelyhood is slim.

Thursday's Final Wrap-Up Meeting. What we have learned.....
*Timmy is 1 in a Billion. There are no other documented cases of children who have a brain malformation similar to that of Timmy's as well as Down Syndrome. The documented cases that are on record, those children didn't survive to birth.
*Timmy DOES NOT have Holoprosencephaly. For lack of a name we call his condition "Timmy"prosencephaly. We all have tested Negative for all of the known gene mutations found so far to be associated with Holoprosencephaly.
*There may be a genetic link to Timmy's condition. The Geneticist feel that Timmy's condition is linked to the PAX6 gene. Which until this point has not been found to be linked to any brain malformations. IF it isn't the PAX6 gene, which causes Timmy's condition, they will be looking at other Autosomal Domenant and Recessive genes or a X-Linked gene possibilities.
*Timmy's abdomenal organs look normal from what they could tell via ulrasound. Even his kidney's which were in question before his birth and for a couple of years after his birth.
*Timmy's Echocardiogram looks great, except for the slight enlargement in one of the right ventricals of the heart.
*Timmy's diabetes may be due to a gene defect.
*Timmy's PT, OT, ST are working on the approperate things to help Timmy in his continued development.

The most interesting thing that I learned.....

Did you know that blood can be grown???? Once a lab has a sample of your blood, they should not need any more blood for future testing. Why? Because they can grow more samples if they need more of your blood. How is this done? The simple way that it was explained to me is...They take a small sample of blood. Wash the blood 10 times, leaving behind only the white blood cells. They then introduce the EB virus into the white blood cells, which in turn makes the white blood cells multiply. Hence Blood Is Being Grown! This blood CAN NOT be re-interduced into the body, because it would cause the person to develop cancer, due to the EB virus. Interesting Huh?

The explaination of "How" gene mutations happen was explained in simple terms. Think of a ruler. Each number on the ruler is a gene. If your ruler has the numbers 1-12 and the number 4 is removed from the ruler, this causes a defect in the ruler and the way that you would be able to do any measuring with it. Thus with real genes, with such a small defect, one may not notice any problems with an individual or only mild problems may be seen. Take that same ruler, remove the number 8. The problems in an individual are more noticable and/or severe. Why? Because when only the numbers 1-2 were removed only a small section of the ruler was missing. Now that a larger portion of the ruler is missing, less can be done when trying to use the ruler. Now think of that same ruler. Remove the number 7, but leave the numbers 1-6 in their proper place and the numbers 8-12 in their proper place. By removing the number 7 you have created a defect in the ruler and the numbers no longer line up correctly. Which causes the number that come after the number 7 to fall out of place. When this occurs in a real gene, the genes that follow the missing or damaged gene may be affected in some way causing a person to have known problems. How mild or severe the problems depends on the affected gene and where along the line the defect occurs.

Ok, Science class is now over......

We now have surgery dates for Timmy. His 1st. Surgery to re-open his nasal passages and remove his tonsils will be on March 19th. The 2nd surgery will be on April 16th at which time Timmy will have his adnoids removed and his airway just above his trach lasered to remove lesions. The 3rd surgery will be on April 23rd. at which time the Doc will just be loooking to make sure eveything looks good before he tries to remove Timmy's trach.

I have an eye Doc appointment at Duke Eye Center on Jan. 5th. with pre-op on the same day. Sometime within the month of Jan. I will be having surgery to replace my cornea and lens in my left eye.

Bad News, Good News, Hopeful News

Sorry I haven't updated sooner, but Timmy decided to pull an all nighter Thursday. I guess with the 7 hours 12 minutes of sleep Wednesday night topped off by the anesthesia from surgery Thursday, he felt well rested. So Friday I was more or less a walking zombie.

The Bad News....On Wednesday evening Timmy's left eye comformer came out, yet again. We had been anticipating this would happen. Over the past week or so, Timmy's left eye lid had gradually been opening. It was in longer than Dr. Richard had anticipated that it would stay in. The comformer stayed in for a month. So hopefully Timmy's eye socket has made some progress in growth within the month. The comformer will not be replaced until Timmy goes into surgery to change out the comformer in his right eye. This will occur sometime in February.

The Good News....The sleep study Wednesday night went very well. Of course, the tech could not give us any information as to how well Timmy did. But the tech did say that Timmy slept for 7 hours 12 minutes and went into REM sleep 4 times. And that Timmy woke up twice and was able to get right back to sleep. We were told that it could take up to a couple of weeks for the Neuro sleep Doctor to receive, read and complete the report on the sleep study.

Our second bit of good news is in regards to Timmy's ABR. The hearing test still shows profound deafness in Timmy's right ear. BUT the hearing test shows NORMAL hearing in Timmy's left ear!!! Timmy was able to hear sounds from all of the freguencies. So sorry Timmy! We have to take your newly found cause and effect and teether toy away. You don't need your hearing aid anymore at this time! WooHoo!!!

Now for the Hopeful News....Before Timmy can have his trach removed, he has to go through a couple of surgeries. The first surgery will include enlarging the left (?) nasal passage and removing the tonsils. Or maybe it is the right nasal passage, which is narrow and needs to be reopened? Oh well, I can't remember. Anyway one nasal passage is open and the other is narrow and needs to be opened more. Also during the first surgery someone from the GI team will be doing a Ph probe study. Timmy's esophagus and laranyx showed signs of swelling. So this could possibly mean that Timmy is having reflux. If he is having reflux most likely the nissen fundoplacation surgery that Timmy had allmost 2 years ago is failing. We have suspected something was wrong because Timmy has been able to burp by mouth, he drools a lot and he wants to keep his fingers/hands crammed far back into his mouth. So we will address this issue more indepth as test results become available. For now, I have a call into Timmy's pediatrician to see if she will prescribe some Nexium to go along with his daily dose of Prevacid. The second surgery will include lasering the airway above the trach, to remove scar tissue. This scar tissue most likely formed during the 3 months following Timmy's birth that he spent on a ventilator. Hopefully this will work. If not, Timmy will need a third surgery. In which case, some cartledge will be removed from his ribs to build and expand the airway. Also in the second surgery, Timmy's adnoids will be removed. If all goes well, within a week or two following the second surgery, we can try to remove Timmy's trach. There will be a team meeting on Dec. 8th. A team meeting is where doctors from each speciality get together to discuss their patient cases and plans of care. At this time Dr. Zdanski will present Timmy's case and his plans. And consult with a member of the GI team to see how to proceed with Timmy's reflux. We will follow up with Dr. Z. to see what has been decided.

Thankful for little miracles

Happy Thanksgiving!

Wow, it is hard to believe that the year is almost over. A lot has happened this year that I am thankful for......

My Parents
They have been a God send in a pinch. Even though they have no idea as to how to help with Timmy's medical needs, they have been there to help care for Emily so that we coould take Timmy to doctor visits. And they put up with all of us in a small apartment for 6 months. It was a bit cramped and no one had any privacy, but we all made due.

Timmy's nurses
In my opinion Timmy has the BEST team of nurses that anyone could ask for. They all are very loving, caring and dedicated people. They all go over and beyond the call of duty to take care of Timmy. The nurses not only see to Timmy's medical needs, they also play the part of physical therapist, occupational therapist and speech therapist. There have been many times when we have been financially strapped for money and one of the nurses woould reach into their own pockets to purchase whatever is needed for the Timmy.

Timmy's health
So far Timmy has gone an entire year without a hospitalization! Yay!!!! We have taken on two new team members in the medical field. Dr. Michael Richard, orbital plastic surgeon, has replaced Dr. Dutton. And Dr. Zdanski ENT has replaced Dr. Gregory Hulka. Dr. Richard has taken Timmy into surgery twice so far and we have seen remarkable improvements on the growth of his orbits. Timmy has a sleep study scheduled for December 3rd and exploratory surgery with Dr. Zdanski on December 4th. Being that Timmy is a new patient of Dr. Zdanski's , he wants to take a look at Timmy's airway for himself and not just go on what is in Timmy's records from Dr. Hulka's office. Dr. Zdanski's goal is to "try" to get Timmy's trach taken out in the near future.

Timmy's test results for celiac disease came back negative. Timmy's growth like insulin hormone level also came back normal. His growth hormone was slightly below the lower side of normal. Being this level was so close to the low side of normal, we have opted at this time to hold off on giving Timmy any growth hormones at this time. We have been told that giving Timmy growth hormones with levels this close to normal "could" cause a chain reaction affect and cause Timmy to develop leukemia or some other form of cancer. We have increased the number of calories per day that Timmy gets to try to increase his weight and height. For the past few weeks Timmy's blood glucose levels have been very well controlled.

I am thankful that Zachary is such a good big brother to Emily. He plays and helps watch her while we are busy taking care of Timmy's needs or chores around the house. I'm proud of Zachary for making A's, B's and 2 C's on his most recent report card. Given the fact that he had to change schools soon after school started.

Emily, our mouse, what can I say? She is a typical, curious, hyperactive, helpful, loving 3 year old child. She loves chunks of cheese, watching T.v., going to preschool and helping to wash dishes. She's our CNA in training. She also likes to try to help take care of Timmy whenever possible.

And last, but not least CHOCOLATE!!!! It's a cure all for every and all situations......

HAPPY 5th BIRTHDAY!

!!!!! HAPPY 5th BIRTHDAY TIMMY !!!!!

It is raining today. Yuck! I was so hoping that today would be warm and sunny, so that you could go outside to swing. You enjoy swinging so much. You also like to go on walks around the neighborhood, while being pushed in your KidKart (stroller). You really enjoy listening to the many different sounds, especially the different birds and the barking dogs. I just love to watch your face light up with the biggest and cutest smile, when you hear a familiar sound. I love to hear you laugh. Your laughter is so contageous. When you start to laugh, you first snicker, followed by a few giggles and then a full belly laugh. It is so cute and like sweet music to hear.

There are only three things that come to mind that you dislike. The blowing wind, peaches and the nursery rhyme song "Pop Goes The Weasel." I can agree, peaches are yuck!

We spent the day at home, except for the short trip to Wal-Mart to buy you a birthday present and to order your birthday cake. We plan to have your party on November 8th. This is the date that was the most convient for all of your guest.

Brother Zahary just couldn't wait, so he went ahead and gave you your birthday present from him. Zach bought you a vibrating poodle and a teddy bear. He also gave you a huge banner HAPPY BIRTHDAY card.

Nurse Wendy also gavve you one of the presents that she bought for you. It was a Farmer Says toy. You just LOVE the sound that a cow makes. Moo makes you smile and laugh. This is one of the animal sounds that we are sure that you know and recognize, even when it is within a story that is being read to you.

You also received a birthday card from grandma Gaeth and Uncle Earl. They sent you some money for your birthday. Being that you really enjoy finger painting, maybe you should spend the money on more finger paints and paper?

It is bedtime. Time for nite nite kisses.....

I LOVE YOU Timmy!!!!! Happy Birthday!!!!!!

Post Surgery Update

Some picture of Emily on Halloween. Poor Timmy had eye surgery on Halloween Day and didn't feel up to going Trick-or Treating.

Timmy had the eye comformers in his eyes replaced on Friday. Surgery went very well. Timmy had some growth in both eye sockets. This is very good news! Timmy has hydrogel expanders in each of his eye sockets at this time. Dr. Richard was able to get the smallest size of the hydrogel in Timmy's left eye socket and the medium size in the right. There are three different sizes of comformers/hydrogels that are used to expand the eye sockets. The difference between the hydrogel and comformer is, the hydrogel is made of a silicone type substance, which absorbs the eyes natural secretions, thus this causes the hydrogel to expand and stretch the eye socket. A comformer is s hard piece of plastic, which is wedged in the eye socket to help maintain growth. Dr. Richard chose to use the hydrogels this time to give Timmy's eye sockets a rest from the plastic comformers. Both of Timmy's eyes are sutured shut to help to hold the hydrogels in place. The sutures are on the inside of the eyelids. Dr. Richard did a FANTASTIC job with placing the hydrogels! Honestly, Timmy's eyes have NEVER looked this good following previous surgeries with his "old" occular plastic surgeon.

Timmy was in quite a bit of pain. This is to be expected following any surgery. Also the hydrogels can expand to their full potential within a few hours or days. Timmy's pain was easily managed with Tylenol and Motrin alternating the doses every 3 hours. Timmy was also given a dose of his Valium, which helped to further relax him. I (mom) figure that the Valium helped only because Timmy still had some anesthesia in his system, a dose of Tylenol and a dose of Motrin. Timmy CAN'T take Valium, because it makes him fly higher than a kite!!!!

What do I mean by this? Well the very first time that Timmy was given a dose of Valium, which was suppose to help him relax and sleep. Timmy stayed up ALL NIGHT in a fit of hysterical laughter! Now comes the plot to kill Dadddy (Floyd)!

Timmy woke up Friday night early Saturday morning, to be exact 1:00am, just as Floyd was heading to bed. What sleep aid did Floyd choose to try to get Timmy back to sleep???? Oh no not the ole standard miracle sleep aid, Zanaflex. Not the one which would have had Timmy knocked out in 10 minutes or less. Oooh Noooo! He gave Timmy a dose of Valium! Wanna guess who had to get up and stay up with Timmy, so that he didn't use his hands to hit at his eyes, while in his fit of hysterical laughter??? ME (mom)! Guess what Dad (Floyd) did? He went to bed and went to sleep! I was up with Timmy until well after 4:00am! Even though I was exhausted, it was funny to watch Timmy in his fit of hysterical laughter. At 4:00am I couldn't stay awake any longer. I had to get some sleep. I had been awake off and on since 1:22am Friday morning. I was so scared that we might over sleep and miss our scheduled surgery time. We had to get up at 4:30am so that we could get dressed and have Timmy to Duke by 6:00am. I hated to do so, but I put Timmy's arm splints on and put him in his bed. I don't like doing this because he still tries to self stimulate and can hit himself in the eye even with the arm splints on. I was able to rest with one ear open until 7:00am at which time PaPa and Emily came to the door and woke us up.

What A Day!!!!

Timmy had to be at the hospital at 6:30am. We arrived a little late, 6:45am. After checking in at admitting, we were sent upstairs in the Children's Hospital surgical unit. We were immediately taken back and Timmy was prepared for surgery. Timmy was taken into surgery at about 8:00am. His surgery was over at about 8:45am. Surgery went great! There wasn't an infection in either ear. The ear tubes that had been in the ears had come out. The doctor cleaned the ear wax out of the ears and replaced the tube in each ear. Timmy did so well in recovery, we were ready to leave by 10:00am.

On our way home is when everything went downhill! Merry Small, one of Timmy's home health nurses, drove us to Timmy's scheduled surgery. Merry stopped to fill up her car with gas before we started on our way home. Within a few minutes of leaving the gas station, the check engine light came on. Merry pulled over thinking that maybe she had failed to replace the gas cap securely. Immediately after leaving the interstate, the car engine dies! Merry had just recently had her car serviced and she checked the oil before we left to go to UNC. After checking everything that she could possibly have fixed herself, she made several calls to towing services trying to find someone who would do roadside service. NO ONE did roadside service. She then called 911 and a policeman was dispatched. He called a towing service that they use alot. When the tow truck arrived, the driver agreed to tow the car. Being that there wasn't enhough room in the tow truck for 3 other adults and a child in a car seat. Can you guess how we got to the towing company at the same time as the car??? We rode in the car, on the back of a flatbed tow truck!!! Wow, what a ride that was! The ride was almost as good as a carnival ride or a fair ride. You can feel every pothole hit and when the driver would turn a corner or go around a curve, it felt like the car was going to tip off of the tow truck. After dropping $30 for gas, $125 for the tow, well over an hour wait and possibly closer to two hours for the mechanic to diagnose the problem with the car, everyone's stress level was at its max! When the mechanic returned with the final verdict as to the problem with the car, we all were sent into a state of shock! The problem was one that had not even crossed anyone's mind. The timing belt has broken and this in turn had made the entire engine go bad!!!! Man what luck! Over 180 miles away from home with a child who had just had surgery and wasn't feeling great. Timmy was crying from being in minor pain, feeling miserable from having a high blood glucose level, hunger , the stress of just having had surgery and just the stress that he was picking up on from everyone else. This in turn drives our stress level up even further. We all are trying to calm Timmy while brainstorming our options. Merry decides that the best and only thing to do is to rent a car. So Enterprise Rental was called and someone from Enterprise comes to get us to take us to their office so that Merry could sign the approperate rental agreement papers. WooHoo our problem as to how we were going to get back home had been solved! Yeah right! Merry goes in to sign the rental papers and just because she doesn't have a major credit card and she wasn't from the local area, they wouldn't let her rent the minivan. Merry's Visa Check card wasn't good enough for them. I had a major credit card, but they wouldn't accept my credit card, because I don't have a driver's liscense. And cash was totally out of the question for an option. Merry called her sister Chris who lives, but who is in the process of moving from the area, to help save the day. Chris came to Enterprise and took the minivan, which Merry had tried to rent and Chris let Merry borrow her car. THANK YOU SO VERY MUCH CHRIS!!!! YOU ARE A LIFESAVER! I DON'T KNOW WHAT WE WOULD HAVE DONE WITHOUT YOUR HELP. Timmy had just had surgery that morning and he wasn't feeling well. We had exhausted all of our other options. THANK YOU! THANK YOU! THANK YOU! And if there is ever a day that you need a favor feel free to ask for our help. We owe you one.

A Busy Week Ahead

Timmy has a busy week ahead, with Pre-Op and two surgeries. Tomorrow afternoon, Sunday we will be leaving to go to Chapel Hill. Timmy has to be at UNC at 6:30am Monday morning. So we will stay in a hotel Sunday night. Monday's surgery is with the "new" ENT, Dr. Z. Timmy will be having ear tubes replaced, because ear wax is completely blocking the ones currently in his ears. Also there is fluid behind Timmy's eardrums. The new tubes will help to drain the fluid and help improve Timmy's hearing. We are all looking forward to the surgery being over, so that Timmy can start wearing his hearing aids once again. We are all hopeful that once Timmy starts wearing his hearing aids, his vocabulary will grow and words will be pronounced better, so that others can understand what Timmy is trying to say. We brought Dr. Z on board as Timmy's "new" ENT in September. Timmy's "old" ENT didn't want to be aggressive when it came to Timmy's hearing issues. He also wouldn't make any decisions alone, when it came to the management and preparations to try to remove Timmy's trach. The "old" ENT would pass the buck to Timmy's Pulmonologist, who in turn would toss the ball back to the "old" ENT, so nothing productive was being accomplished. Also the Audiologist, who works along side the "old" ENT didn't want to do anything to help improve Timmy's hearing. We requested on several ocasions for a repeat ABR (Audiotory Brainstem Response) test, to reassess Timmy's hearing following ongoing ear infections and we were told another ABR wasn't necessary. We also brought a "new" Audiologist on board, in September. Timmy is scheduled for a ABR on December 4th. Following the ABR, we will discuss with the Audiologist, the results of the ABR and options for new hearing aids for Timmy.

On Thursday, Timmy has a Pre-Op visit. On Friday, Timmy is scheduled for surgery to have his eye comformers changed/replaced. The comformers are used to stretch the eye sockets, to prepare them for prosthetic eyes in the future. Dr. Richard at Duke will be preforming the surgery. We changed Occular Plastic surgeons, because Dr. Dutton at UNC, didn't want to be aggressive and change out the comformers in a timely manner. The comformers are suppose to be replaced every three to four months. In July when the comformers should have been replaced, Dr. Dutton wanted to wait until sometime in November. In July, Timmy's eyes were secreting amber colored fluid. From what we have been told, this is a definate sign that the body is starting to reject the comformers and this is a sign that it is time for the comformers to be replaced.

Timmy has never had two surgeries scheduled so close together before. Being that each surgery is a simple procedure. Neither surgery should last no longer than 30-40 minutes. And being that Timmy hasn't had any complications arise during or after previous surgeries, he should be fine. Pain and recovery time should be short. With the pain being managed with Tylenol or Advil.

I'll try to post a post surgery update on Timmy Monday evening.

Endocrinology visit

Timmy had a visit with Dr. Ali, his Endocrinologist earlier this week. Dr. Ali was very impressed on how well everyone has kept Timmy's blood glucose levels under control. Dr. Ali order a complete electrolyte panel to check Timmy's sodium, calcium, potassium levels. Timmy has been having what we suspect to be leg cramps and his electrolytes being out of balance could cause leg cramps. Or what we are seeing could just be a typical 4 year old's temper tantrum. Better to have blood work done to assess any possible problems, rather than just to chalk what we are seeing up to a tantrum.

Dr. Ali is also screening Timmy for Celiac Disease. Celiac Disease is a disease from what I have read, causes malabsorption of food in the small intestine. And is associated with gluten intolerance. Children with Celiac Disease are typically small for their age. Being that Timmy had some blood glucose issues almost a year and a half ago with Pediasure, Dr. Ali feels that it best to screen for Celiac Disease before we decide on which new more balanced and age approperate formula to try. Timmy doesn't have any of the symptoms associated with Celiac Disease.

We also discussed with Dr. Ali the idea of possibly starting Timmy on growth hormones. Some of the risk associated with starting the growth hormone are, Timmy could develop certain forms of cancer or leukemia. These risk are higher for Timmy being that he has a chrosomal abnormality (Down Syndrome). By giving Timmy the growth hormones it would help Timmy to catch up growth with his peers. Dr. Ali is having Timmy's insulin like growth hormone level checked. This level is what is causing Timmy to be small for his age, compared to the human growth hormone. We will make our decision once we get the results from the blood work.

Genetic Testing

We have been invited to go to NIH (National Institute of Health), in Bethesda, Maryland, for further genetic testing and to participate in their study of children with (HPE) Holoprosencephaly. We are so excited! We are hopeful that our many questions regarding Timmy's condition will soon be answered. This past February, we had an appointment at UNC with the genetist Doc and everyone's blood was collected to be sent to NIH for genetic testing. We are anxiously awaiting those results. We have been in contact with several people of the staff at NIH in regards to the results of the testing. We have been told that niether of us are carriers of any of the known genes related to HPE. They are suppose to go over these results with us at our visit. The date of our visit is scheduled for Monday, December 15th., with us arriving on Saturday, December 13th. As of right now, we will be there at NIH for a week. We have decided to participate in all areas of the screening areas offered. This includes: A visit with a Neurologist, Endocrinologist, A complete physical, An Echocardiogram, An abdominal ultrasound, Photography, Speech and Physical Therapy evaluations and all of us are going to be seen by a genetic ophthalmologist. Being that both Floyd (dad) and I (mom) have vision problems, they are interested in seeing us as well. The genetics team at NIH "thinks" that the possible cause of Timmy's condition may be linked to mom and dad's vision impairment. If this is true, it must only affect boys, because Floyd and I have 3 children together and Emily is very healthy. I also have 4 other children from previous relationships 2 girls and 2 boys, all of these children are healthy. So I'm very interested to find out what the team at NIH findings are. If the Doctors at NIH can not provide us any information as to what may have caused Timmy's condition or the odds of this occurring again. It will definately be a great learning experience for everyone. And a much needed all expense paid vacation for us.

School Days

Here are a couple of picture of Emily. They were take during that summer at her Preschool. Emily has been attending Preschool for the past 8 months. She LOVES going to Preschool so that she can play with her new friends.

Timmy started his very first day of Pre-K on September 8th. He LOVES going to school! His favorite part of the day is music and movement time and having his friends pull him around the playground while he rides in the fire truck.

When Timmy started school he was going only 3 times a week for half a day. We had an IEP meeting on October 8th to reassess Timmy's adjustment to school and so that the school therapists could add their goals that they had set for Timmy to the IEP. Timmy now attends school 3 times a week full time and the goal is to work him up to 5 days a week full time to prepare him for Kindergarten next year.

At the IEP meeting we discussed the safety of the swing that has been placed on the playground for Timmy to use. After re-inspecting the further adjustments that the physical therapist has made to the swing, I still feel that the swing is inapproperate for Timmy's use. So the next step is for the school to order a swing, which is more suitable to Timmy's needs. We have been informed that this may take some time to get into place. In my opinion, Timmy's safety is more important than a botched job.

We also discussed meal preparation of school lunch for Timmy. After looking more closely at the school lunch menu, the carbohydrates and sodium levels are too high for Timmy's diet and in my opinion any child's diet. It is amazing that 60% of the calories for the lunch comes from carbohydrates! And we question "why" kids are overweight, are being diagnosed with juvinille diabetes at a younger and younger age and why their blood pressure is so high. We have decided that for a more balanced diet, it is in Timmy's best interest, that we prepare his lunches at home and send them to school with him each day. This way we are sure that the consistency is right for Timmy as well, being that all of his foods have to be a smooth puree. The only issue that the school has to worry about is making sure that LORD Timmy's (a.k.a. TimmyLocks) food is kept at that "just right" warmth at lunch time