August 4, 2013

Making Progress, Upsetting Setbacks, and Birthday Celebrations

Friday, July 19th
Ethan took his first steps, holding onto his walker properly, without using the sling! I was so excited! I shouted across the house for Jeff but of course by the time he got to Ethan's room, Ethan was no longer standing and wouldn't try again. I kept encouraging Ethan to try again but he was just so excited to play with his Daddy that he wouldn't even attempt it again.

Saturday, July 20th
We headed south to my parent's home for a visit and a weekend of birthday celebrations. We took Ethan's walker, hoping that he might show off his new skill for his grandparents. Of course I wasn't able to catch it on video, but he did go ahead and take about two steps with the walker for everyone! I even got a cute picture of Ethan standing, holding onto his walker properly!

 

We spent the day visiting with my family and were blessed to spend a little bit of the evening with my Grandma Chambliss and "Grandpa" Richard. They are always excited to see our little guy and we know that they continue to lift him and our family up in their prayers. It is wonderful knowing that so many people are praying for our little man.

Sunday, July 21st
My parents' home began filling up with my mom's side of the family a little before noon. On that side of the family we have 5 birthdays between July 17th and the 23rd. Mine is the 17th, my cousin Mike's is the 18th, our grandpa's is the 20th, my cousin Michelle's daughter Callie's is on the 22nd and Ethan's is on the 23rd. When I was a kid our family typically gathered to celebrate mine, Mike's and our grandpa's birthdays together. As we got older the tradition was put on hold, I am really glad that in the past few years we have began celebrating together again!

Shortly before lunch was scheduled to start, Ethan was playing on the floor and accidentally had his foot under the recliner when my aunt, not knowing that Ethan's foot was under the chair leaned forward and the chair came down on his left foot. It was a complete accident and could have happened to anyone, and although I know she feels bad it wasn't any one's fault! Ethan cried out in pain (of course) and we could see a few indentions in his foot from the contact. We knew it was better to be safe than sorry so Jeff, Ethan, my Mom and I headed to the local ER for x-rays. Children with PBD-ZSD often have low bone density and are therefore more susceptible to fractures than other children, plus since Ethan can't "tell" us how his foot feels we believed that having x-rays was the responsible thing to do.

We were at the ER for around 2 hours. X-rays were taken, read, and we were seen by the doctor. The x-rays were somewhat inconclusive but Ethan was put in a splint and a follow-up with a pediatric orthopedic was suggested.

After the visit at the ER we returned to my parents' home for lots of food, family, and birthday celebrations.
Ethan and his Aunt Amanda.

Peek-a-boo!

Cheese!




Ethan and his cousin Mike III.

Ethan loves his treasure chest! This is his 3rd one. He "killed" the other two.


Not long after the extended family began heading back to their respective homes it was time for us to pack up and head north. The drive isn't that bad and Ethan did really well on the way home.

Monday, July 22nd
I spent the majority of the day on the phone with the nurse from our primary doctor's office. She was doing her best to try to get us into a pediatric orthopedic before we left on Thursday morning for the 2013 GFPD Family & Scientific Conference in Lincoln, NE.

It was apparent that Ethan's foot was causing him some sort of pain because he was no longer pulling to stand, bearing weight, or cruising. He had an "accident" on the splint, so we removed it and put on his AFOs. Since his braces are custom made they actually provided more support/stabilization than the splint did.

At the end of the day the nurse called to let me know that she hadn't gotten anywhere with the pediatric orthopedics and that she would start trying to call the "normal" orthopedics in the morning. The pediatric orthopedics wanted Ethan to see a "normal" orthopedic first. URG!

Tuesday, July 23rd
Ethan turns 3 years old! The birthday boy got to go to school (STEPS) on his birthday. While Ethan was at school Jeff and I both had errands to run to help us get ready for the trip. My errands were a bit more self-centered as I headed to the beauty salon for a bit of belated birthday pampering.

The nurse at our primary doctor's office continued to search for someone to see Ethan but was still unsuccessful. The pediatric orthopedics in our area thought Ethan should see a general orthopedic first, and the general orthopedics did not want to see him because they felt he should be seen by a pediatric orthopedic. What a mess!

Jeff picked Ethan up from school and I returned home later in the afternoon after stopping by the store for food and supplies for the birthday party we were having that evening. Jeff's parents and his grandpa joined us for dinner and then we filled the house with relatives a bit later for cake and ice cream. Jeff had family from here in town, from Effingham, and even as far as Texas.









Birthdays are a bittersweet to me. While we praise the Lord that Ethan is celebrating another birthday with us here on Earth, it saddens me to think of all the things Ethan "should" be doing now that he is 3 years old. My son is still functioning at approximately a 12 month old level developmentally. He has very little communication, he can't walk, he still plays with toys for infants. The more birthdays we are blessed with the more Ethan falls behind, the more it hurts. The more we pray for a miracle and for a real treatment that would provide our sweet boy a greater quality of life.

We were thankful to have been able to celebrate and share Ethan's birthday with both sides of our family. Our little boy is now 3 years old! Will you continue to pray with me that Ethan will live long enough to see real treatment options that will help him fight PBD-ZSD and help him reach more milestones and gain more skills/abilities.

Wednesday, July 24th
The day was spent getting ready for our trip to Nebraska! I also got a hold of one of the doctors who would be seeing Ethan at the PBD-ZSD clinic during the GFPD Conference and talked to him about Ethan's need to see an orthopedic specialist. He agreed to reach out to his pediatric orthopedic friends and told me that he would do everything he could to get Ethan seen while we were at Omaha Children's Hospital! This was a huge answer to prayer!!!

No comments:

Post a Comment