December 12, 2011

It has been a while....

It is hard to believe its been nearly a month since my last post. I've thought of writing often, but just haven't made the time to do so. We've been busy.
  • In the middle of November we got the keys to our new house and started working on making it ready to move in. It takes a lot of work to bring a house that was built in 1965 up to 2011, almost 21012. With a ton of help from family and friends we were able to spend our first night in the house the Wednesday before Thanksgiving. The work has continued and there is still more stuff in boxes than out, but we are very happy and excited about having a house that will be accessible for Ethan when he is able to start using a walker and if a time ever comes that he needs a wheelchair.
  • Over the Thanksgiving weekend we were able to spend time with both sides of the family. It was nice to see family, even though it is still very hard for me, since there are so many little ones. I am thankful that everyone else has healthy, typically developing children, but it is still so hard for me. I try to give these feelings over to the Lord, but it seems like I never feel at peace regarding all the "NORMAL" kids that "EVERYONE" seems to have.
  • Ethan has been busy with all of his therapies. Ethan continues to see the speech language pathologist, developmental therapist-hearing, occupational therapist and physical therapist weekly. Additionally once a month the developmental therapist-vision and the dietitian come to visit.
  • Just after Thanksgiving Ethan had another ABR (a hearing test) and he slept really well - he must sleep for the test because it measures the brain's response to sounds. We gave him melatonin to help him sleep. We started doing this nightly about a month ago. It has been so great. Ethan is getting the rest he needs, and wakes up such a happier little man. The hearing test showed that while Ethan's hearing loss is significant that at this point his hearing aids are still able to help him! This is great news. We will retest again in a year or sooner if we feel that there is a reason to do so.
  • Ethan had his first picture with Santa last week at a Christmas party hosted by BabyTALK. We love being a BabyTALK family. I am so thankful that they have embraced the idea of a playgroup/meeting for families of children with special needs. I am thankful for Special Connections and recently wrote a letter about the group that is being distributed to other families throughout our area. It is my desire that more families will get involved.
  • Ethan has been on the experimental medicine for two months. Just today we had blood work done. The liver panel came back, and while I don't have exact numbers yet, the geneticist called this afternoon and sounded encouraged. While the levels are elevated, they seem to have stabilized since last month. We were worried that they might double again but they haven't! Yippee! The results will be shared with Dr. Braverman in Canada and a decision will be made about what dosage Ethan will continue on. I'm excited that we have a go ahead for continuing the medicine. It is great news for Ethan, for us, and hopefully for all children with PBDs. Praise the Lord! Thank you for the prayers! The other tests will take a while for the results to come in as they have to be sent to Kennedy Kreiger Institute in Baltimore.

I seem to have a lot on my mind lately. Today, when we were at the hospital getting Ethan's blood work we had a quick visit with our geneticist's nurse, Laura. She's great! I gave her a Christmas card, and one for her to give to Dr. Schneider and just started crying. Last year there were thoughts that it might be Ethan's first and only Christmas with us. Now, Lord willing, in just a few weeks we will be celebrating Ethan's second Christmas. While I am overjoyed by this, my heart is heavy for all our families that won't be able to hold their little ones this Christmas. It has been a really hard year for our support group and more than a dozen families will be experiencing their first Christmas without their little one. My heart just breaks.....

Prayer Requests
  • All families impacted by PBDs. Pray that those who do not know Jesus personally will experience His love in a real way this Christmas season. That our focus will be on CHRIST this Christmas. That there will be revival and many will come to know personally the babe in the manger who grew up to be the man on the cross.
  • For strength and comfort for families that are hurting from the loss of their little ones.
  • For healing! For miracles! For a cure to this nasty disease! Pray for the therapists, teachers, nurses, doctors and researchers who have dedicated themselves to helping kids with PBDs.
  • Ethan will continue to stay healthy and continue to grow and develop. Pray that the medicine would work and that it will increase his peroxisome function. Pray that the medicine would be successful and that other children with PBD would be able to be helped by it as well.
  • Strength for Jeff and I as we love and parent our amazing little boy. Pray that we will always seek the Lord's guidance as we make medical decisions and other choices that will impact our family.
Thank you for your continued prayers, love and support.

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