Skip to main content

Wednesday 12/8/2010

Last week was not necessarily very eventful but it sure was stressful. I’m still battling the cold that I must have caught Thanksgiving weekend and Ethan caught from me. He seems to be feeling better this morning, but still seems rather tired. If I could make up the rules for the universe, one of them would be to make it impossible for moms to get sick. It just isn’t good when we don’t feel well, especially when others in our house our sick too!
Monday we had our home visit with Ethan’s Hearing Specialist, Julie. Julie works out of the Illinois School for the Deaf’s Champaign office. She will meet with Ethan twice a month for the next few months and then her visits will increase to once a week. Julie was so excited that Ethan had gotten his hearing aids and was thrilled to hear that he has begun laughing! His laugh, although he doesn’t share it with us as much as I wish, is still contagious. Julie understands our commitment to seeking any means of communication for Ethan – American Sign Language (ASL), oral communication, and/or Picture Exchange Communication (PECs). I am so glad that she understands that Ethan may use one or a combination of all to communicate with us. One very interesting thing that I learned during our visit is about a child’s hearing age. For Ethan, since he received his hearing aids at 4 months, that is when his hearing age begins – therefore when it comes to hearing and speech development in a way he is considered 4 months younger than he actually is. Julie, our Hearing Specialist, Betsy our Speech Language Pathologist, and our Audiologists Brittany and Anna keep telling us how great it is that Ethan was aided so early! I know he is young, but I think it is already helping. When we put his hearing aids in first thing in the morning he begins to look around, as if to say – “Thanks, mom. What will we do today?”
On Tuesday we attended our Baby Talk play group. Only two other families braved the cold weather, but it was still fun.
Wednesday and Thursday Ethan and I stayed at home avoiding the frigid weather and nursing our colds.
Jeff took Friday off as a vacation day and we planned to work around the house, but instead we ended up taking Ethan to see Dr. Smith. Dr. Smith said that Ethan and I were just sharing a cold – boo, but had us take Ethan to the hospital for a chest x-ray just to be sure it wasn’t pneumonia. The chest x-ray was clear – YEAH! After the doctor we headed back home for what turned out to be a really rough night for all of us. Ethan wasn’t feeling well – very congested and it was hard for him to relax and go to sleep. Jeff and I took shifts.
Saturday was another day at home attempting to get rest and get over the colds. We weren’t very successful at either, I admit.
Sunday was a very special day! We had Ethan’s baby dedication at church. Jeff and I are both Christians and we attend a Southern Baptist church. Most Baptists and many other Protestant denominations do not perform infant baptism, and instead practice what is often called “believer’s baptism” for those old enough to confess Jesus Christ as their Lord and Savior. In our denomination we believe that “Christian baptism is the immersion of a believer in water in the name of the Father, the Son, and the Holy Spirit. It is an act of obedience symbolizing the believer's faith in a crucified, buried, and risen Savior, the believer's death to sin, the burial of the old life, and the resurrection to walk in newness of life in Christ Jesus. It is a testimony to his faith in the final resurrection of the dead” (excerpt from the Baptist Faith and Message).
Since we believe that baptism is for those old enough to confess Jesus Christ as their personal Lord and Savior, many families choose to have a baby dedication. This in many ways is a promise that we as parents will seek to raise Ethan up in a Christian home, seeking God’s guidance and direction as we love and raise him. It is also a time to ask our church family to support us in this as they will also have a large role in his spiritual growth. Jeff’s dad, who is an associate minister at our church performed the baby dedication and his grandpa, a retired minister also took part. It was a very special time for us. Our church family has been praying for us from the very beginning when Ethan had to spend a few extra days in the hospital – weeks before we would learn about his diagnosis.

After church we had lunch with Jeff’s family and later in the afternoon went to the mall. Although it was cold, it was nice to get out of the house for a while. The mall was so busy – everyone seemed to be out Christmas shopping.

So far, this week has been much more relaxing, although we are all still fighting this nasty cold. On Monday Ethan had his first consultation appointment for his helmet. On Tuesday my mom came up and we took Ethan back over to Springfield to the Audiologist for a hearing aid check. Ethan has already grown enough that they went ahead and took impressions for new ear molds. They also attempted to do a bit of a hearing test with his hearing aids in to see how it has improved his ability to hear – this was somewhat hard since in addition to still being very young he wasn’t feeling well. They were however able to tell that he was reacting too many of the noises, which was great! Our audiologists, knowing that with Ethan’s PBD diagnosis, his hearing loss may continue to progress, they are going to be very proactive in monitoring it so that we can adjust his hearing aids accordingly. They also know that if his hearing loss progresses to the point that hearing aids are no longer helpful, that we will seek Cochlear Implants.

Since everyone in our house is still sick we’re going to try to take it easy for the rest of the week, because next week is going to be a busy one. Monday we have home visits from our dietitian and hearing specialist and then we have Ethan’s 4 month shots in the afternoon. Tuesday we have our Baby Talk playgroup. Wednesday Ethan has physical therapy and Thursday he has speech/feeding therapy. And, if we have enough energy on Friday we may go to our playgroup at Pershing Early Learning Center. WOW! Next week is going to be crazy!!!

Prayer Requests
Please pray for a little baby named Ellie. She, is about 2 months younger than Ethan, and has a PBD, but isn’t doing very well at all. Please pray for her doctors and family.
Please pray for all the families affected by PBDs.
Please pray that we will seek to fully enjoy the gift of God’s Son this Christmas.


Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.