The Journey We Are On.....

Last night we picked up Ethan's new glasses. Today he wore them for almost two hours in the morning, an hour in the afternoon and 45 minutes in the evening.

Ethan broke his right hearing aid today when he yanked it out of his ear! BOO! The audiologist is sending us a new piece and if I can't get it fixed we do have an appointment scheduled with the ENT on June 11th. We were just over there last week.... URG! Moments like this remind me that despite all the challenges, Ethan is still a almost 2 year old boy who has a mind of us his own.

Corey Sheppard March 28, 2012 - May 27, 2012 Sunday morning I got a text from my new friend Jeanine letting me know that her precious Corey had passed away. I was crushed. You may remember that just a few short weeks ago Ethan and I had the honor of spending an afternoon with Jeanine and Corey (and Corey's big sister Casey and their grandma). While I know the reality of this disorder it hit me especially hard because Corey is the first child with PBD that I've met in person who has passed away. On Monday evening Ethan and I drove to my parents house so that we could attend the visitation and funeral on Tuesday morning. I am so thankful that my mom was able to drive us and go with. The three of us attended the visitation and then my mom and Ethan went for a walk while I attended the funeral service. I was blown away by the number of people who knew Ethan and about us. Sometimes people come into your life that you instantly have a connection with. From the first time that...

Ethan is loving "moving" in the walker. What he lacks in form he makes up for with his enthusiasm. We'll be talking with his physical therapist this week when we see her to see if a different walker or a gait trainer could provide him with the extra support he needs to help him develop a proper step/walk.

Ethan is spending a couple more minutes each day in the walker. He's working on bearing weight through his legs, and he has learned that he can make it move! He isn't taking steps the correct way yet, but we'll get there. Here is his workout from today.

Ethan went to a new eye doctor today.  Last year we made the long trip to Iowa to see a retina specialist and then he referred us back to St. Louis Children's for a doctor there and for glasses. Ethan wore his glasses for just a short while before he completely refused to keep them on. Every time we'd put them on he'd pull them and his hearing aids off. So, eventually we just decided not to fight it because we knew he could see some, and without his hearing aids he can't hear that much at all. So we picked our battle. We wanted to try to find an eye doctor that wasn't as far as St. Louis, and we had already had a visit when Ethan was just a few months old with one of the doctors in our area - which we didn't like, so we weren't sure what to do. But, a few months ago a friend, who has a little boy just two months younger than Ethan who has cerebral palsy, told us about the doctor she took her son to in Champaign, so I called and made an appointment.  ...

Although it may still be a while until Ethan is really walking with the walker we are trying to get him to spend a few minutes in it each day so he can get familiar with it and work on getting strong enough to use it.

My dad was in a fishing tournament today at Lake Shelbyville, so after he was done he stopped by to see us and Ethan. Ethan and his Papa had a great time visiting. They played and and played, Ethan showed off in his walker (he's not really ready for the walker yet, but he's trying), and even got to get into a boat for the first time.

Ethan has his weekly speech session on Wednesday mornings at 8am, so we get started really early each Wednesday. Ethan's recently found mobility (this boy can combat crawl anywhere he wants to go) has been making speech a bit more difficult, so today we put his AFOs on and stuck him in his stander. Ethan did really well, tolerating the stander for 45 minutes! I was so surprised by this since he has given Jeff and I such a hard time about being in the stander. Ethan will just fuss and cry and fling his head back when it is just us. So, we already had a small victory for the day by 9am! After speech Ethan and I had a good morning here at home. Boy, does this boy LOVE his toys. Despite all the stuff that I struggle with in regards to Ethan's diagnosis and all the things that are just so very hard for him because he has PBD, one of the things that I am so grateful for is that Ethan loves to play. I know that seems like such a simple thing (babies and kids should just naturally ...

So, today was the BIG day we've been waiting for.... Well, in many ways it was very underwhelming and the results pretty inconclusive. There were are few small improvements but nothing really significant and a few of the numbers were actually a bit worse, but we might know why for some of them. Ethan's VLCFA Levels Normal Controls 10/11/2011 Baseline 12/12/2011 2 months of Cystadane treatment 4/30/2012 6 months of Cystadane treatment C26:0 Hexacosanoic .23 +/- 0.09 1.160 1.490 0.999 C26:1 .18 +/- 0.09 .600 .960 1.230 Phytanic Acid <3.0 2.410 1.990 13.27 Pristanic Acid <0.3 .310 .270 3.640 C 22:0 20.97 +/- 6.27 4.680 4.220 4.980 C24:0 17.59 +/- 5.36 ...

It has been a tough few days around here.... We got a huge water bill and found out that one of our toilets has been running nonstop and needs fixed. The oven stopped working correctly this week. Ethan didn't fall asleep on Thursday night until 2:30am on Friday morning. At 2am we put him in the car and drove around! Friday afternoon Ethan started running a pretty high fever so we headed to the doctor's office. Doctor Smith said it was either a virus or related to the teething and to just keep treating with Tylenol and ibuprofen.  On the way home from the doctor's office we got a flat tire! Jeff came and got us and he took Ethan and I home and then headed back to change the tire and then take it to Walmart to buy a new one. Ethan was fussy much of Friday evening and didn't go to bed until 11:30pm (with us) so I didn't sleep well at all. And we are still waiting for text results..... Today was much better though.... We all slept in! And although Ethan ...

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Ethan's not yet crawling in four point, but he sure is getting stronger and more efficient at his combat crawl.

Ethan and I had the opportunity to visit Baby TALK's STEPS program today. The STEPS program is sort of a pre-preschool program for kids with special needs. It is our hope that Ethan will start the program in the fall. He would go for three hours a day, twice a week. He would get some of his therapy services "at school" - most likely OT and Speech as well as developmental therapy and would continue to get the rest of his services at home until he turned three years old and would start receiving services from the school district. Here is the description of the program from the Baby TALK website: STEPS (Success Together Experiencing Play and Stimulation) is a program with provides family-centered service designed to meet individual needs of the children enrolled in the early intervention and/or Macon County Family Literacy program. STEPS provides a blend of educational and therapy services withing the context of a developmentally appropriate curriculum as families are ...

This has been a week of ups and downs and I feel like I've been on a roller coaster. There have been moments of great happiness, joy, and blessings and moments of deep sadness and sorrow. Last Sunday night we put Ethan to bed with anticipation of Monday morning's blood draw. Ethan and I headed to the hospital early that morning with him still in his pajamas. He has been on the Cystadane for six months and it was time to see if the medicine was "working." In addition to testing to see if there had been any improvement in Ethan's VLCFA and plasmalogens, blood was taken for the liver function panel, ACTH and cortisol (which measures adrenal function) and also to check vitamin K levels. Ethan was a real trooper and did great. He didn't like being held down of course, but I am always so proud of him. We also had a great talk with the geneticist's nurse who cares deeply for Ethan and who worked so hard to get Ethan on the Cystadane. After returning home Etha...