In case you didn't read the previous blog - on Thursday's PT & OT session the therapists declared that Ethan is officially sitting independently! We are so excited about this milestone! We began working on sitting when Ethan was six months old. His form still isn't the best and we can't yet sit him on the floor to play by himself, or anything like that, but he'll get there. I know he will.
It seems like I haven't been very diligent about keeping everyone updated in the last few weeks, so here goes...
Since returning from our visit to Iowa to see Dr. Stone and Dr. Wilkinson we've been keeping busy.
- Ethan continues to have PT each week. Ethan will get a little vacation from PT for the next two weeks as our PT who is originally from Wales has gown home to celebrate her mom's birthday. She will be in Britain for the Royal Wedding - sadly, she wasn't invited.
- Ethan continues to meet with his DTH each week. I think he enjoys these sessions as much as I do. It is so fun to watch him play and respond to the different sounds. One of his favorite things to do is bang toys together - I think he plans on becoming a drummer, just like his Daddy.
- On Wednesday, April 20th Ethan had his first visit to an orthopedic. The orthopedic didn't take any x-rays and prescribed Ethan a very old-fashion method of correcting his slightly turned in feet. After discussing this with our PT and OT the next day, we've decided to go ahead and pursue a second opinion from Shriners Hospital in St. Louis. So, we are beginning the application process for Shriners. Not only are they dedicated to helping children with orthopedic issues, they do not turn anyone away for their inability to pay. This is a HUGE blessing, because there is a good possibility that Ethan may need extensive orthopedic support in the years to come.
- This week I also got Ethan's eye appointment at Children's Hospital in St. Louis scheduled. Next month we'll be getting little man's first set of glasses.
I am hoping that next week might be a calmer week. On Tuesday, Ethan will have his meeting with his DTH, and on Wednesday he has his 9 month check-up with Dr. Smith. Other than that, we don't have any other appointments scheduled!! I can't believe it. However, I'm sure something will come up. :)
As I reflect on Ethan turning 9 months old and seeing how he acted today, it is almost hard to remember that just 8 months ago we learned of his diagnosis and heard the worst case scenarios. While I know that only the Lord knows what the future holds for our little guy, I must admit that today I am optimistic.
As I've mentioned before, according to the scientific literature, making it past the age of 1 year can be a very promising sign for children with PBDs. So, we have 3 more months to go to reach that milestone, and right now Ethan, although behind, is still progressing in his skills and development, at his own perfect Ethan timing. I love this little boy so much - even when he drives me a bit batty. :)
- Pray for Ethan's little friend Keagan who was born this week. Keagan is very sick and is the NICU at the nearby Children's Hospital. As of yesterday he was a bit more stable but they hadn't yet been able to run any tests to help them determine why he is so ill.
- Pray for all children and families impacted by PBDs.
- Pray for healing for Ethan - I still pray for a miracle each night and we are seeing God's grace and love flow through Ethan every day. We are so proud of the accomplishments Ethan has already made and we know they are only possible because of the Lord. We continue to put our faith in the Great Physician.
- Pray that Ethan will continue to grow strong and healthy.
- Pray that Ethan will be accepted as a patient at Shriners Hospital in St. Louis and that the doctors there will be able to have a clear plan of action to give Ethan the orthopedic support needed to help him be prepared to walk (when he is ready to).
- Pray for the doctors and researchers who are working on treatments for PBDs. We believe that God often uses modern medicine to heal people. Please pray that breakthroughs will be made and new treatments will be discovered that will improve the lives of children with PBDs.
- Pray for the upcoming summer conference put on by the Global Foundation of Peroxisomal Disorders. Pray that all of the families that want to come would be able to make it to this time of learning and fellowship. We are planning on attending and while we are in NE for the conference Ethan will have the opportunity to be seen by the top PBD specialists in North America - Dr. Bravermann and Dr. Raymond. We are very excited about this.