The Journey We Are On.....

I want to raise money for the Global Foundation for Peroxisomal Disorders! The GFPD is the new non-profit organization that is dedicated to helping children and families faced with a peroxisomal biogenesis disorder (PBD) diagnosis. If you haven't checked out our website, www.thegfpd.org , please do. In the months since Ethan's diagnosis I have bonded with other parents across the country and world for that matter whose lives will never be the same because of PBDs. I have even taken on the role of GFPD Family Registry & Support Group Coordinator and I am very proud to say that we've been able to connect about 150 families from more than a dozen countries (some have kiddos who are still fighting the PBD battle and others have little ones in Heaven). I know it doesn't sound like a lot of families, but you have to remember that this PBDs are very rare genetic disorders. So, I want to hold two fundraisers each year for the GFPD. Here are my ideas... 1) In the fall ...

I know I need to spend some time updating everyone, but instead I just thought I would share some of the cute picturs that I was able to capture of our little man this afternoon.

I took Ethan to the doctor on Monday because he was still fighting whatever bug he has caught. The fever would break, come back, break, and them come back all weekend long. So, Monday it was time to go see Dr. Dan. Dr. Dan gave Ethan a good luck over and came to the conclusion it was probably a viral infection and that we should just keep doing what we've been doing and make sure we let the office know if the fever gets to 101 or higher. He also ordered blood work - some routine stuff to check related to Ethan's PBD. So, I was planning on taking him to get the blood draw on Tuesday morning, but then I realized we needed to get another test called into the lab. So, Tuesday morning I spoke with the doctor's office and had it called in as well. But, since these tests need to be done first thing in the morning (because they have to be fasting) we then pushed it back to this morning. However, last night Ethan crashed before seven o'clock and ended up sleeping through t...

Another touching song.... Laura Story "Blessings" http://youtu.be/1CSVqHcdhXQ This song was shared with me by a dear friend, Melissa. Her little girl, Ginny, has the same disorder that Ethan has. In the last nine months we have become good friends, although we have yet had the opportunity to meet in person. Her and another good friend, Vicky, who I have been able to meet in person (yea!) are true blessings to me as we all do our best to be seek the Lord's wisdom and guidance as we parent the very special little ones He has given us. I feel very blessed to be part of the parent support group. I have to thank my friend Shannon for giving so much of herself to share with other parents as we struggle through this unique journey. You are a blessing to me and so many others. Thank you!

As you know by now, if you've been keeping up with the blog, is that we have been waiting for Ethan's glasses to arrive in the mail. Well, today they came! The glasses won't be able to correct all of Ethan's vision issues, but we are hoping that they will help. When it comes to PBDs, nothing is predictable. Every child is unique and things can change often and/or quickly. In general most children with PBDs have numerous vision issues (depth perception problems, limited peripheral vision, cortical vision impairment, cataracts, glaucoma, complete blindness, etc.) and unfortunately most are unable to communicate verbally what they are experiencing. So, when it comes to Ethan's vision this is what we know - he is farsighted and has astigmatism. It also appears that his optic nerve is smaller than it should be. As mentioned in previous posts, the eye specialist in Iowa estimated his vision at 20/750, and Ethan will be undergoing some additional testing ...

Thank you to everyone who has been praying for us the last couple of days. The high fever from Wednesday seems to be completely gone now! Ethan's temperature has been back to normal since yesterday afternoon. No diarrhea yet today (and hopefully it will stay that way). His appetite seemed start coming back last night and this morning he even ate a few bites of fruit and cereal for breakfast. Not sure if it was just a little virus or if maybe it is teething (although I can't feel or see any) but whatever it is, it seems to be gone for now. This was Ethan's first health issue since the RSV this winter, and I am so glad that he has seemed to make it through so well. I don't think I'll ever be able to be at ease whenever there is a fever, or a simple cold, etc. but I guess Mommies are supposed to worry about their little ones, especially when they have underlying health issues.

This is going to be a long one.... Tuesday, May 10th Ethan had his weekly visit with Julie, DT-Hearing, today. She usually comes on Mondays, but because of the Mother's Day weekend, she came today. Ethan showed of his amazing sitting abilities - sitting for over 30 minutes during therapy. He played with toys and even "talked" a bit for Julie. He has a knack of being very quiet for her .. LOL. She is excited because Ethan has been making more "happy" sounds recently. We are still working on the "b" sound. Sometimes I think he might be starting to vocalize it, but other times I'm not so sure. We also think he is starting to "pre-sign" as a few times it has appeared as he is trying to sign food or milk! We are very excited about this new development. During our visit with Julie, Ethan's dietitian, Jen came for her visit. Ethan is growing very well. He weighed in at 19 pounds and 14 ounces and is nearly 29 inches long. He is still ri...

I have found myself in tears recently while listening to the radio. Here are links to a few of the songs that have greatly touched me. I'll will call them my "theme songs." Mandisa - "He Is With You" http://www.youtube.com/watch?v=4AAALBo2DKs Mark Schultz - "He's My Son" http://www.youtube.com/watch?v=_l09AJ9lXSE Mark Schultz - "What It Means to Be Loved" http://www.youtube.com/watch?v=yE58hw_ghHI Carrie Underwood - "Temporary Home" http://www.youtube.com/watch?v=if7CZF_ycWQ

Today we were able to get up and around early enough to get to Bible Study as well as Worship service at church. It was a great morning. During Bible Study we watched a video by Louie Giglio called " Fruitcake & Ice cream " (watch a portion of the video on YouTube.com) it was an amazing illustration of God's grace and love that He extends to each and everyone of us, we just have to be willing to open our hearts and lives to Him. The Worship service was also great. Our minister, Pastor Tracy, has a friend who is working as a missionary in Japan. She spoke to us live via Skype. Pastor Tracy then spoke to us about the importance of not losing the excitement we had last week as we celebrated the Resurrection. Ethan was very good in the nursery today. He seems to be getting used to being in the nursery on Sunday mornings and Wednesday nights, and I am getting more comfortable with leaving him. We have wonderful nursery workers, and our friend Tammy takes extra special ca...