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