What were God’s intentions as He designed and created children with disabilities? What was His vision and purpose? I want to take a hard look at what society views as defective and ask, "What does God see?" I hope we can gain a better vision of what He sees and His purposes in His creation. The cornerstone of the discussion will be the Bible. The personal narrative will be our family’s journey with Epidermolysis Bullosa.
Tonight is a night for grieving. Please read Trisha's blog post. She flew to Washington this past month to adopt a sweet boy named Seth that had EB. We were all so excited but it did not end as we had expected.
And I heard a loud voice from the throne saying, "Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.
I received a message this morning that AJ would be scheduled for his esophageal dilatation in mid April. I thought they must be crazy, he can't wait until April as his throat will completely close. I called the clinic back and as soon as the secretary answered she said, "I have a new date for you; It will be March 1st". I told her that I was glad they found a new date as I was wondering if we were going to have to travel to Cincinnati for the procedure. I am thankful that plans are moving forward and that I don't have to look at alternative arrangements.
AJ is enjoying the warmer weather. He loves to go for walks. We have a large stroller for him so that he can relax and go along for the ride rather than always driving his wheelchair. He usually falls asleep before we get back home. I am excited about spring even though I realize we might get a real Minnesota blizzard yet. We are looking at fencing our back yard this spring so that I don't have to be concerned about AJ or his dog, Jackie, running up to the road behind our home (it's pretty busy for being out on the edge of town). Any one put up a chain link fence before? I'm open to ideas and help.
Here is our back yard. The picture is taken from the road.
You can't really see it in the picture but one side has a fence so we need to finish the back and opposite side. My first step is to find out exactly where the property line is, then draw the plan up and purchase a permit.
Check out this video that was made by an amazing EB awareness supporter, Christie. AJ is one of the children in the video (first three pictures). We know many of the children in the video personally. Sadly some of them have already left their families here on earth. Please feel free to share the video with your family and friends.
I wanted to send you an update on our fundraising project that will send us to the EB conference. Our goal is $2620 and your donations have brought in $1,940. Thank you so much. We have made our reservations and are excited about the opportunity to attend. If anyone has questions about our trip, please feel free to ask; we are still accepting donations. They can be sent through PayPal or mailed to our home address.
AJ continues to do well considering his inability to eat. He continues to express his desire to get this "fixed". I called the doctor today and told her that I will be bugging her about getting his esophageal dilatation scheduled. This has been much too long of a wait.
We do have an appointment this week with the dermatologist. It is his major six month appointment where he will be seen without any bandages and they will photograph all of his wounds. He doesn't mind because no one really touches his skin. We give him a bath in the early morning and then he puts on clothing that looks like a newborns gown. His legs and feet zip into it so that he does not tear his skin. It is very soft and looks like a big bag that is zipped up the front. At the end of the appointment we bandage him right back up in the office.
Later in the day AJ will have a bone density scan. Kids with EB can have poor bone density and we hope to use the results of this scan to give us a baseline with which we can observe any future changes should he need treatment.
Thank you again for all of your prayer and financial support.
AJ has had a good Valentines Day. He carefully wrote his name on his Valentines for his friends at school. He was so excited about his Scooby Doo Valentines. EB certainly has an impact on Valentines Day. It's not necessarily bad but it's different from my other children's experience. For AJ, it's not the candy that is the big deal on Valentines Day; It's the cool super hero on the Valentine.
AJ is really struggling with his throat (esophagus closing). He tells me many times a day that he is sick and he points to his throat. He is not eating much at all by mouth. Usually he will at least nibble on something; now he doesn't even try. (Thank God for G tubes) I can hear him "slurping" his saliva. I called the doctor and again they said they are working to get it set up. I told them it needs to be soon. So we are waiting for that call.
Four Years ago tonight we brought our little AJ home. I remember leaving Minnesota in the middle of winter and heading down to Texas. My first stop was the Neonatal Intensive Care Unit. I will never forget walking in and seeing my little guy, for the first time, rocking in his swing. He was so precious. It was so odd to see the other families all huddled around their little babies and there sat AJ, swinging silently, alone in the silence. We learned that the families in the NICU had come together to purchase a musical mobile to place above AJ's crib. They recognized that he had no visitors and he did not even have a name; they called him, "Baby Boy". I am thankful for those that watched over AJ for the six weeks before we arrived. They showed him the love of God through their actions.
The lights in the NICU were always kept low in the unit so there was no sense of time (day or night). Time seemed to hold still while I was there. AJ's little eyes were so huge as they looked at me for the first time.
His body was wrapped in gauze and a feeding tube was taped to his face. He was covered in vaseline - even his face. He looked very content and I hated to disturb him but I couldn't wait to pick him up and hold him. I could hardly believe how blessed we were; He was ours.
I spent three days in the NICU taking a crash course on how to care for all of his special needs. I had the privilege of meeting his birth mother while I was there. Together we visited and rocked the little man. Together we chose his name; Alexander James Fischer. On Superbowl Sunday AJ and I flew home to Minnesota. Everyone was so excited to meet him.
It was then that our adventure with AJ and EB really began. Not only have we been blessed with AJ but we have been blessed to meet so many friends in the EB community. We have many things to be thankful for. Thank you Lord for blessing our family with AJ! We would all agree that our lives have been changed for the better.
Psalm 9:1-2 (English Standard Version)
I will give thanks to the Lord with my whole heart;
I will recount all of your wonderful deeds.
I will be glad and exult in you;
I will sing praise to your name, O Most High.
I hope you enjoyed the pictures. Thanks for following us on our journey.