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January 2016 Wrap Up

The end of January and the beginning of February have been marked by time with family, several doctor appointments and unfortunately more seizures.

January 18th 
It was Martin Luther King Jr. Day so Ethan didn't have school and Jeff had the day off from work. We spent the day as a family, and in the evening Ethan had a seizure that woke him from his sleep before we had transferred him to his bed. 

January 20th
We took Ethan to the dentist for his regularly scheduled cleaning. Ethan won't let us in his mouth to brush, so we have his teeth cleaned every 3 months instead of every six. As you might imagine, Ethan does not enjoy having his teeth cleaned. Jeff goes with us and sits in the chair with Ethan and I help hold him down/still while the dental hygienists work on our little guy. Thankfully, they are very good with him and let us dictate when Ethan needs a break. Ethan's dentist has shared with us that she has a brother (who is in his 30s now) with special needs. Ethan attends the same school that her brother did. Ethan's school is a regular neighborhood elementary school (although it is not our neighborhood school it is less than a 10 minute drive from our home) that houses the severe and profound special education students in a section of the building.

January 21st
Ethan and I went to Springfield, which is just short of a two hour drive, to see his endocrinologist. The appointment went well. This was the first visit in which Ethan stood against the wall to be measured! He needed a bit of help, because although he does walk a little bit, he doesn't actually stand still independently for more than a few seconds. Ethan hasn't grown a lot of the last year and is only about an inch taller, but overall the endocrinologist isn't too considered. I know that he has been growing because most of his 3T shirts and even some of his 4T shirts are too short in the sleeves. 

January 23rd 
Jeff's parents, sister, brother and his wife and their two children, and grandpa all came to our house to celebrate Jeff's dad's birthday. We were very thankful that everyone came to us, since we are hesitant about traveling too far from home these days due to Ethan's seizures.

January 26th
We had our six month home visit from our foster care agency. Although we have not yet had a child placed with us, routine visits occur every six months. We have been licensed a year and we continue to pray for patience and wisdom as we trust the Lord in the building of our family.

January 27th
I kept Ethan home. It was a half-day at school. He was super tired and just didn't really want to wake up. Ethan has been staying up later and then sleeping in. Although we aim for him to be asleep by 8:30 there is not really anything that we can do to make him go to sleep, and with his seizures seeming to be worse when he is falling asleep, waking up, and/or tired, we are just very cautious.

January 28th
I picked Ethan up early for his physical therapy appointment at Easter Seals. He did great! He really worked hard on the tricycle. 
January 30th
Ethan had a bad seizure day, they clustered in the afternoon and we had to administer his rescue medication. Even after we gave him the medication it took several minutes before the seizures stopped and Ethan fell asleep. He slept for about 2 hours and woke up like nothing had happened. We hate seizures!

January 31st
We had a good morning at church. Ethan has a great team of buddies, which allows us to attend Sunday School and the Worship Service. We are very thankful for this support. "Why Families Need Special Needs Ministry," is a must read for every church attender and clergy member. On Sunday evening we finally made it back to our small group. Sadly, Ethan had multiple seizures on the car ride there, but he was fine once we got there. Our small group is a huge blessing to our family. We have lived here for just over a year and a half, and have been getting to know this group of families for almost that long. After dinner together someone in the group was supposed to share their testimony, but somehow it ended up with Jeff and I sharing about our life with Ethan. [I'd like to encourage everyone to read a recent post written by a fellow PBD-ZSD mom that provides a bit more insight into the many complicated emotions and thoughts that go through our heads and hearts every day.] Our friends have embraced us as a family and had a chance to ask some questions that perhaps they hadn't felt comfortable to do so before. I did a bit of crying, but that is to be expected. Since we do not have any family in the area, more than ever before we need our church family. We spoke honestly about our struggles and also admitted that we need their help, especially if/when God places another child in our family. When we headed home for the night we felt loved. We are even going to be teaching several of our friends how to use Ethan's feeding tube ---- they asked/volunteered to learn!

February 1st
We started off the morning with a trip to the lab for fasting blood work. Thankfully, we didn't have to wait all that long and the blood draw went pretty smoothly. They collected so much blood! After the blood draw I fed Ethan his breakfast and gave him all of his medications, there in the waiting room, where we got to spend a few minutes visiting with a friend from church who is a nurse at the hospital, and then it was time to head to school. Right before I was leaving the house in the afternoon to pick Ethan up from school I got a call from the University of Iowa reminding us of his upcoming eye doctor appointment. I had written the appointment down for Wednesday (Feb 3rd) but the call said that it was Tuesday (Feb 2nd). Obviously, I was more than a little confused and concerned so I called back to speak to an actual person, and verified the appointment and learned that I must have written the date down incorrectly months ago when it was scheduled. So, I let them know that yes, we would be there, and double checked that they weren't going to be hit with a blizzard. They said, no, they were supposed to be okay, although other parts of Iowa were going to be hit hard. Thankfully, with the unexpected change in plans Jeff's dad was able to still arrange to come with us, since Jeff had to work, so he arrived at our house around 7pm.

February 2nd
In order to be over in Iowa City for a 9:30am appointment, we left just a little after 6:30am. Ethan was not very happy about being woken up early (again) but we got up and around fine. The weather and roads were okay until we got a little bit into Iowa and then they started to get slick and a little slushy. We praised God for getting us there safe and although we had to loop around a bit before we found the parking garage, once we got that straightened out we were set. We made it on time and were seen by the first doctor, a low vision specialist, pretty quickly. Then we waited to see the second doctor, the retina specialist. That took a bit longer and we say a younger doctor first and then Ethan had to have his eyes dilated and then we saw the retina specialist. Although we spent most of the day traveling and at the eye doctor appointments it was worth it, because these doctors are amongst the top specialists in the country, and they take their time to talk with us, and they genuinely care for their patients. 

With how out of control Ethan's seizures have been (he had more than a half dozen short ones in the car on the drive over to Iowa City even) it was nice to get a good/hopeful report from the eye doctors. Both doctors were really pleased with how well he is using his vision and his retinas are stable and in decent shape. While the truth remains that Ethan is legally blind, we continue to focus on his functional vision and helping him use what vision he has to the best of his ability. They both agreed that right now Ethan's neuro issues are holding him back much more than his vision loss. Dr. Stone, the retina specialist, also had his nurse take my blood and a skin biopsy (sample) from Ethan. They are going to grow Ethan's cells in the lab for research purposes. The more that they can learn about PBD-ZSD the more likely it is that new treatment options will be developed. Retinal gene therapy for individuals with PBD-ZSD may not be all that far away --- maybe even within the next 5 years. Increasing the vision of an individual with PBD-ZSD obviously won't cure the disease, but I know we would love to be able to have a way to improve Ethan's sight. For children who are deafblind, like Ethan, even if they don't have any other physical or cognitive impairment, we live in a world in which it is much more difficult for them to learn and be an active participant in. For more about the challenges deafblind learners face please read about the pyramid of learning.
Ethan's gift from the team at Iowa City!
We currently have 4 more doctor appointments scheduled for this month: GI, ENT, Neurology and Genetics. 

There are so many things that are on my heart and mind as prayer requests, but I'll just share a few.
  • Pray for the salvation of those who do not yet know the Lord. That hearts would be softened and ears, minds be open. 
  • Pray for wisdom for the doctors as they treat Ethan and for medical and/or supernatural interventions that would cause the seizures to be controlled and/or stopped.
  • Pray for those new to the devastating diagnosis of PBD-ZSD (or similar life limiting disease), those who are in the trenches of it (like our family), and those who are learning to live on the other side of this disease now that their child has passed. 
  • Pray for the doctors and researchers who are dedicated to discovering treatments for rare diseases like PBD-ZSD.
  • Pray for churches across our country and throughout the world to engage families impacted by disabilities. Please read "What are the stats on disability, adoption and the church?" part 1 of a 3 part series. 


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