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.