April 30, 2011

Saturday, April 30th - Splish Splash

After visiting the park it was time for a bath! Baths have gotten alot easier now that Ethan can sit up. Jeff still puts on the swimming trunks so that he and Ethan can go "swimming," but it is so much easier! Ethan seems to enjoy baths now. He is even splashing himself - it is so cute!




Saturday, April 30th - Visit to the duck pond

Today was a beautiful day, so we decided to take a family trip to the park. One of our parks in town has a duck pond, and so we thought that Ethan might enjoy seeing the ducks and geese (okay, not really, maybe Mommy and Daddy wanted to see the birds). We even ran into Jeff's cousin, her husband and their little girl, Anna, when were were at the park. We all had a great time walking around the pond and visiting.





This is a park? Who cares!

April 27, 2011

Wednesday, April 27th - Grump-o-saurus!

Ethan had his nine month check-up today with Dr. Smith. Everything looks great. My "little" man weighed in at 19 pounds and 10 ounces and was 29 inches long! Take that "Failure to Thrive"! We are so very proud and excited about how well he has been growing. Right now as it comes to growth he is an "average" 9 month old - which is very awesome! I remember so well when we were taking him to get weighed every week just to make sure that he was gaining weight! Not anymore!

Dr. Smith is going to make the referral for us to take Ethan to Shriner's Hospital in St. Louis. After visiting the orthopedic in Springfield last week we would feel more comfortable finding a more comprehensive team, plus there is the financial aspect of it all. Having kids is expensive - and kids with special needs are even more so! Dr. Smith was also glad to hear that next month Ethan will be getting his classes - we go May 12th to see Dr. Leuder at Children's Hospital in St. Louis for those and he was very excited that this summer while we are in Omaha, NE for the GFPD Family and Scientific Conference that Ethan will be seen by the PBD specialists - Dr. Raymond and Dr. Bravermann. Overall, it was a great appointment.

My biggest concern at the moment is Ethan's grumpiness. While I am so very thankful that he is sleeping through the night, he doesn't like to nap. Therefore, he is a very grumpy little boy most days. This isn't fun for him or me. I also believe that he may be teething, and although we can't see or feel anything in there, they may still be giving him so grief, which is another reason he might be such a gump-o-saurus most of the time.

Ethan is continuing to practice sitting, and he seems to be getting stronger each day. We are so very proud of him.

We have so much to be thankful for.

April 26, 2011

Tuesday, April 26th - Grandpa Chambliss comes to visit.

My dad came to visit Ethan today. Grandpa brought tons of stuff that Grammy got for Ethan. My mom (Grammy) is a bargain hunter - she is able to find the best deals! I was so proud that Ethan showed off how well he is sitting for his Grandpa. Ethan's sitting is getting better each day.



A touching story about another family impacted by PBDs.

Please check out this story about my friend's son. They live in Florida.
http://www2.highlandstoday.com/content/2011/apr/25/251727/boys-wishes-come-true/news/

April 24, 2011

Sunday, April 24th - Easter Sunday

He is Risen! He is Risen Indeed! This Easter Sunday as we celebrated the risen Lord, we gave thanks to Him for conquering death once and for all. Those who have put their trust in Him do not need to fear. Thank you, Jesus. I am so thankful that I know that you love Ethan even more than we do - which is so hard to imagine - and that we can trust you.

This morning we attended the Easter service at our church and were so blessed to see our little church nearly packed! Many of our members had out of town family visiting in addition to new visitors to our church. The sermon and the music were both wonderful.

The family in our Easter outfits after church.





Look at me, no hands!





April 23, 2011

Saturday, April 23rd - Ethan is 9 months old!

Our little man turned nine months old today! He is such a "miracle in progress" to use the term that his auntie Kristin used in the poem she wrote about Ethan at Christmas time. Not only has he made it this far, but he is doing really well!

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. :)

Prayer Requests
  • 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.

April 21, 2011

Thursday, April 21st - Independent Sitting!



Ethan will be 9 months old in two days! We have been working on sitting for a very long time! While it may take him a while to perfect his form, we sure are amazed and excited about this milestone. The PT and OT said he was "officially" sitting when he sat for more than one minute this morning during the combined PT/OT session. He was even turning his head and grabbing for toys while maintaining his balance! We are so very proud of him!




April 13, 2011

Wednesday, April 13th - Couching sitting and other fun stuff

Before PT this morning while Ethan was still in his Pj's we did some couch sitting! We have been working on sitting for almost three months now, and he has come a long way. We aren't sitting independently for long periods of time (it can range anywhere from few seconds to a few minutes) but we are going to get there.

Couch sitting is a lot easier than sitting on the floor.










And then he played....


And then it was time to get dressed and ready for PT. We love Ethan's PT, she's great. She was very impressed with the progress that Ethan has been making, even since last week, with his sitting. She always gives Ethan a great workout and gives me easy-to-do exercises for me to do with Ethan. A new thing that Ethan has been using during his sessions recently is an exercise ball. He enjoys bouncing (with help, of course) and the workout on it is really helping to strengthen his core - which will make sitting independently for longer periods possible.

I know that Ethan will do things in his own way in his own time, but I have to admit that I am hoping and praying that by the end of this month we have sitting independently (for at least 5 minutes) conquered. If we don't, that is okay - but we all have to have a goal, right?





April 12, 2011

Tuesday, April 12th - Dietitian Visit

Ethan had his monthly visit with his dietitian, Jen, today. He weighed 18 pounds and 15 ounces and he is 28 and 5/8 inches long. This puts him right at the 50th percentile for both height and weight! We are so proud of him!!!

In the last two weeks Ethan has really been taking to baby food. I am now making most of it myself - much easier than I thought - because then I know exactly what he is eating. With PBDs so many kids really struggle with eating and there is some evidence to suggest that limiting phytanic acid can be helpful, so for us, it is just easier and cheaper! :)

It varies a lot from one day to another when it comes to how much he is eating, but we are trying to get him to eat at least 1 or 2 ounces three times a day. Here are some recent "meal time" pictures.


Do you think he knows this means "more"? We are working on that sign.

Ethan's first introduction to meat - chicken! I think my little man might end up a vegetarian. What do you think?

Ethan almost holding his bottle.... He is better at grabbing it and pushing it away than he is holding it to eat.

April 8, 2011

Friday, April 8th - Bathtime Fun

When we were in Iowa to see the eye specialists Ethan got to go swimming for the first time. Unfortunately, I did not bring my camera. Ethan loved swimming, which we were in a way surprised because he dosen't like bathtime at home.

So, today, Jeff got in the tub with Ethan to go "swimming" and it was a much more enjoyable time for everyone!
Hold me tight, Daddy!
Rubber Ducky, you're the one. You make bathtime lots of fun!

I can splash!

Okay, I'm done! Towel, please!!

April 5, 2011

Tuesday, April 5th - Report on our trip to Iowa

Got back a little bit ago from the trip to the eye specialists. I was very impressed by the doctors. Our little man will be getting his first pair of glasses soon to help with his far-sightedness and astigmatisum (I'm sure I didn't spell that right). The best news was that as of now, his retina's look fine! The doctors also told us that at 8 months old we are no to worry about the numbers too much (20/750) because what is more imporant is how Ethan is using his vision - he bats at toys, reaches, grabs, recognizes his bottle and his mommy's face, etc. :) So, glad we took the trip.

Also, Ethan went swimming for the first time last night at the hotel pool - and he loved it!