Following a busy Christmas season with family, the New Year started out slow as the cold weather and snow/ice kept us inside where it was warm. School was closed numerous times throughout the month due to the snow/ice and/or biter cold temperatures and there were even a few days that the roads were too treacherous for Jeff to make it across town to go to work.

One of the best days of the month was Sunday, January 12th when Vicky and Kenna came to visit us! It was a joy to attend church with friends who we consider family and spend the majority of the day with them before they had to head home. I don't think I'll ever get tired of spending time with other GFPD families -- there are so few of us and we are spread out throughout the country/world -- that anytime we get to spend with one another is very special.

Despite the weather, Ethan did have several visits with specialists. 
  • On the 13th Ethan saw both the GI and the Neurologist. They were both happy to see how well he is doing. He had lost a little weight, so we are boosting up his calories a bit. The GI wasn't worried, he was excited bout how mobile Ethan is becoming and believed that the weight loss was simply because Ethan's activity level has increased. The Neurologist was also very pleased to know that the combination of anti-seizure medication with the increased daily steroid dosage has Ethan's seizures under control and that we couldn't even recall when he had his last seizure.
  • On the 14th Ethan had a speech/language evaluation with members of the cochlear implant team. This evaluation was the next step in determining if the team believed that Ethan was a good candidate for a cochlear implant. The evaluation went as well as we could have expected, as his parents we are well aware of how delayed Ethan is and his very limited ability to communicate. Just a few days after the evaluation we got the call to let us know that the cochlear implant team was in agreement that Ethan was a great candidate for an implant and that giving him greater access to sound could only benefit him and his quality of life. While we are of course nervous about the surgery, we are excited about the potential for Ethan to be able to hear more of the world around him.
Jeff and I also started our Foster/Adoption classes in January. As most of our family and friends know, after Ethan was diagnosed with PBD-ZSD and learning that we had an 1 in 4 chance per pregnancy to have another baby who had PBD-ZSD we decided that we were not willing to "risk it." Although there have been many other families that have went on to have healthy children after having a child with PBD-ZSD, there are also many who have not been able to and have made decisions to terminate the pregnancies after prenatal testing made them aware that the baby had PBD-ZSD. Since we knew that we would not terminate, we decided together very shortly after Ethan's diagnosis that we would have to build our family another way.

When you find out that you and your spouse are carriers for something as nasty as PBD-ZSD and that there is such a high risk of having another child impacted, the options and choices for family building become limited, complicated, often very expensive, and still there is no guarantees that you will be able to add a healthy child to your family. There are members of our GFPD family who have built their family through natural conception (risking it), sperm donation, egg donation, embryo adoption, in-vitro fertilization with preimplantation genetic diagnosis (IVF w/PGD) so that only embryos that tested negative for PBD-ZSD are implanted, private/domestic infant adoption and adopting out of foster care. Due to numerous reasons (our faith, the fact that Ethan is still living, and finances) the only option that has ever been a real option for our family is pursing adoption out of foster care.

We are fortunate to know several families from our area who have adopted children out of foster care, so we have seen albeit second hand, many of the ups and downs, joys and frustrations that come along with the process. It is our prayer that we will be able to add a healthy, typically developing little girl (preferably under the age of 3) to our family sometime in the future. The classes that we began in January are the first step in the process. After finishing our classes and completing all of the other requirements we will become licensed foster parents. We are expecting that sometime in April we will become licensed.

After we become licensed foster parents the "wait" will begin. Since we are choosing to be pretty specific about the child we plan to adopt we can expect to wait for a while, and that is okay for a number of reasons. First, we want to get Ethan's cochlear implant surgery and the healing and programing that is part of the process completed before we seek to add to our family. Secondly, we are choosing to not fall in love with a child whose parental rights have not yet been terminated, so that fact along limits the number of children who are available. It typically can take 18 months to 2 years for parental rights to be terminated, even if a child is taken into foster care shortly after birth so we know that the daughter we are hoping to add to our family will likely be a toddler, which is okay. To be honest I'm not sure how well I would be at meeting the needs of a newborn and Ethan (especially since Ethan's schedule since Christmas has included morning wake ups around 4:30am to 5:15am on a very consistent basis).

Overall, January was a pretty quiet month with a few very exciting "starts" toward future major changes for our family over the next few months. Ethan's cochlear implant surgery has been scheduled for early March and we would greatly appreciate your prayers as we begin this new hearing journey.


Popular posts from this blog

Faces of Peroxisomal Biogenesis Disorders

#PauseForPBD -- October 5, 2017

2017 GFPD Conference Recap