The Journey We Are On.....

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 ...

This morning we all got up early and headed to the hospital for Ethan's second EEG and appointments with the Neurologist and the GI. Ethan did not do as well getting ready and during the EEG. The preparation process, which includes attaching over 20 electrodes to his head was extremely traumatizing to our little boy today. He was so upset and there was nothing we could do to help him. After the prep work was done he needed to go to sleep for the test. Thankfully Jeff was able to lay down next to Ethan on the bed to try to soothe him and get him to sleep. Ethan probably cried for 20 minutes. He was so upset. It broke my heart. He finally fell asleep but stirred several times during the 30 minute "sleeping" portion of the test before waking up for good. He woke up crying and continued to do so through the 10 minutes of the awake test which has him looking at very bright flashing lights. I'm not sure Ethan even opened his eyes for this part because he was so upset. Aft...

I haven't written in a while. I tend not to write when things get crazy around here. After a somewhat quiet June, July started in a way we had not expected. On Tuesday, July 1st I took Ethan to STEPS. Ethan seemed very happy to be back at school. I mentioned to his teachers that we had noticed that Ethan was loosing his balance a lot and sometimes lost control of his head. Jeff and I had been noticing this for several weeks and while we were very worried that it was most likely a symptom of the progression of PBD-ZSD we knew that if this was the case there was nothing we could do to stop it. PBD-ZSD is a form of leukodystrophy, and at this time science/medicine has not found a way for us to stop the loss/damage of the brain's white matter. We also knew that we'd be seeing several of the top PBD-ZSD specialists in North America at the end of July, so we didn't feel that this warranted an appointment with our "local" neurologist at this time. Although Ethan ha...

Ethan underwent the second part of his feeding tube surgery today. The doctor replaced the long tube (called a PEG tube) with a button. While we are very sad that Ethan is now completely dependent on his feeding tube (sometimes he will take a few bites of purees, but not often) we are very thankful that we have a way to provide our little boy the fluids, nutrition, and medicines/supplements his body needs in order for him to stay healthy and continue to grow and develop in his own time and way. We are very glad to be rid of the long tube and to have the button. As always we had wonderful care from all the doctors and nurses who took care of Ethan. We had great nurses and were excited to see some familar faces and that several people remembered us and our sweet boy. A big thanks to a very special nurse/friend/fellow believer, Anne. We feel blessed that God placed you in lives.  

Jeff and I are hoping to raise money for PBD-ZSD research by hosting a 5K Fun Run/Walk hopefully in September 2014 at Fletcher Park in Mt. Zion. We had hoped that we could have our first Pound the Pavement for PBD-ZSD – Central Illinois event this year, but we will need to wait until 2014. If we do this it will be a fun run/walk type event but I figured it out and we will need at least $2500 in sponsorships just to break even. First there is liability insurance which is around $500. If we preorder 100 t-shirts at $10 each that is around $1000 and there are guaranteed to be additional costs of running the event such as security/safety provided by the police dept., advertising/publicity, creation of a website which allows for online registration, etc that will add up fast. Lots of details that must be worked out and expenses that must be underwritten by sponsors if we are going to make the run/walk profitable and an annual event. I believe it ca n be done but I am very ner...

Ethan and I took advantage of the beautiful weather today and spent some time "playing" at our neighborhood park. I hope you enjoy the pictures. Ethan seemed to have a great time, at least for a while. He HATED the grass!

The last three weeks have sort of been a haze of therapy and doctor appointments. Having a full calendar along with all the dreary weather hasn't made April feel very "springy." I am looking forward to nice sunny warm weather so Ethan and I can get back outside everyday even if it is just for a 30 minute walk/stroller ride. We are also continuing to wait to find out what is going to happen with our insurance coverage of the formula. We are hoping to have more answer within the next 60 days. The supplier has up to 30 days to bill the insurance and then insurance has up to 60 days to reimburse them, so we won't know until that happens if the insurance is actually covering the formula and if so, at what rate. Let's just say it is a BIG headache! Monday, April 8th Ethan's vision therapist came to our house. Tuesday, April 9th Ethan's hearing therapist came to our house. Wednesday, April 10th Ethan saw the pediatric surgeon at Carle. We were ...