Jacob's Page

Jake's Gallery

Hi! This is Laurie Bailey. I need to do some major updating for you guys.

Jake's cranial surgery went really well. His surgery was on a Tuesday and he came home on Saturday. We had some pretty intense swelling, but all was well in about two weeks.

After his cranial surgery, we started working on the hands. In January they inserted tissue expanders in the backs of Jake's hands. This technology comes from breast reconstruction after a mastectomy. For about three months we injected saline solution into a port on each of Jake's arms. This saline filled the "balloons" to stretch the skin. When Jake's doctors felt he had enough stretched they were ready to do the separation of the thumb and little finger. This was the plan. But, as with anything else, plans change. They decided to use all the skin for the thumb in order to give Jacob the maximum webbing for flexibility. I'm glad they did. He left hand/thumb healed very nicely. His right hand/thumb has some creepage of scar tissue which can be fixed relatively easily. This separation took place in April. We have been waiting all summer long for a repeat cranial surgery. Jacob's previous surgery didn't close the way the doctor's expected. This left about a silver dollar sized soft spot on the left side of his head. Therefore, they want to go in and correct it before he accidentally falls into something sharp that could puncture him.

It is now September and still no word on the repeat cranial. Hopefully, it will be in October. Meanwhile, we are going to try and put another set of tissue expanders in to continue with the hands. The doctor's goal is to make all separations utilizing the tissue expansion technology. If this procedure is available for any of you out there, I sincerely recommend it because it reduces or eliminates the need for skin graphs which we all know are very painful for the child.

Jacob is a typical toddler. He is a little behind on the gross motor skills. He walks everywhere with the help of the walker, but we are venturing out with a few steps on our own. He does really well also when we are holding his hands. He jabbers a lot with "momma and dad" coming out very clear. He has great recognition of the familiar things such as drink, lights, ball, etc.

Well, as I have said before, I have a set of pictures that I will be sending out very soon so everyone can see what Jake looks like.

That puts us up-to-date for now. Talk to you soon.

Hi! My name is Jacob Kevin Bailey. My mom & dad call me Jake. I was born on May 16, 1996. I weighed 8 lbs 14 oz.

Mom & dad were surprised when I was born to learn that I was born with some anomalies. The hospital where I was born didn't know what was wrong with me. They sent me by helicopter to St. Francis Medical Center where I was admitted to the neonatal unit. At this hospital, they diagnosed my Apert Syndrome.

Mom had to stay at the hospital where I was born because she had me by cesarean. Mom was sad because she did not get a chance to hold me until 4 days after I was born. Dad got to hold me the day after I was born.

Mom & dad had no idea what this syndrome was. Therefore, they started doing research. Well, they got information overload. That scared them because everything they read showed the worst cases. Little did mom & dad know that I was not that bad. In the week I spent at St. Francis, they ran systematic tests to make sure I was alright. They found out that I didn't have any internal problems. They told mom & dad that I had symmetrical syndactyly of my hands & feet and that 2 of my cranial sutures were fused. I had no internal problems. This was a relief to by mom & dad.

The doctor that was taking care of me at St. Francis said he didn't know of anyone in the area who could fix me up. So, he recommended that we go see Dr. Bauer at Children's Memorial Hospital in Chicago. Dr. Bauer is very nice. he has seen and treated quite a few Apert's kids.

So far, I haven't had any surgeries. The doctors have scheduled my tubes for my ears and the removal of my nail for Tuesday August 27th. My nail has been growing into the soft tissue of my hand like an in-grown nail and it makes my hands really sore. So, the doctor is going to cut my nail back until he can create my fingers. (Update: My procedure went well and you can't believe the extra things I can hear because of the tubes). My cranial surgery is set for October 8th. They are also going to put tissue expanders in at that time so they can create more skin for my fingers. We found out that I'll have all five fingers in my left hand and a thumb and three fingers in my right.

 

My mom & dad would love to talk to anyone involved with Apert Syndrome.

Please write us at:
Kevin & Laurie Bailey & Jake
RR 1 Box 74
El Paso, IL 61738
Or call: 1-309-527-4496



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