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.