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Sunday 11/14/2010

Overall we had a pretty good week!

Saturday and Sunday we got to visit with Jeff's family. His brother and his wife and two kids were in town. It is always good to visit with them. My sister-in-law is a physical therapist (and used to work with Early Intervention) so I always ask her tons of questions about Ethan's development when I see her. :)

On Monday morning Ethan and I got to meet with our new friend Vicky. Vicky and her husband have two beautiful children, the youngest has a PBD like Ethan. She lives about 2 hours away, but was in Decatur for a conference! It was a great visit and we both look forward to getting our whole families together sometime soon.

Monday afternoon Ethan and I went to visit the Pittman family. I've been friends with them for many years and enjoyed catching up. There two and a half year old little boy is very precious and seems excited that he's going to be a big brother ;).

Tuesday morning Ethan had his appointment with his Speech Language Pathologist (SLP). It was a good visit and she said he's doing alot of what he should be doing at 3 1/2 months. She is very excited that Ethan will be getting his hearing aids soon. She continues to work with us on feeding - Ethan can get really tired sometimes when he eats - it is just hard for him.

We then went to Baby Talk Times. I am really enjoying this play group! Its not like we do anything special, just share about our kids and then we sing songs (with signs!!!) at the end, but it is really nice. It is so nice to have something to go to that is not a doctor or therapist appointment. ;)

After Baby Talk we went to the library and then had a great visit with my Grandma Chambliss and her boyfriend. They were both excited to see Ethan again!

Wednesday morning we attempted to get blood drawn for some routine liver function tests. The hospital was so busy and after waiting an hour Ethan was tired, cranky and hungry. So, we decided to leave without getting his blood drawn (when it was finally our turn they didn't seem like they could find the veins very easily, and I didn't want them to turn Ethan into a human pin cushion.)

Thursday we headed back to the hospital to try again. This time we were in and out within a half and hour. Ethan did great - he cried during the blood draw of course, but was fine once it was over and I could hold him :).

Friday we got two emails from Ethan's geneticist. One said that he was pleased with Ethan's blood work - nothing was headed in the wrong direction! AMEN!!! The other said that Johns Hopkins had found the second mutation - which most likely confirms that Ethan has NALD (the moderate severe form of PBDs) - with this disorder there is no real way to say for certain where on the spectrum someone will be. We are not going to let this set a limit on Ethan though and we know that only the Lord and Ethan will be able to tell us what Ethan will achieve.

Saturday was a good day of getting stuff done around the house and in the afternoon my dad came by for a visit. Ethan loved spending some time with his grandpa and we are excited that we'll get to spend more time with my parents and family in two weeks. Following my dad's visit we attended a party for our friends who were welcoming to thier family a beautiful foster son.

Today we've been to church and have spent a restful afternoon at home as a family. :)

This next week is going to be a busy one: Ethan will see his PT, have a swallow study done at the hospital, and have his four month checkup.

Please pray for strength for families who are just learning about their child's diagnosis. We've had several new families join our parent group in the last week. Please pray that we will lean on the Lord for strength and look to Him for guidance as we raise our very special little ones. Pray that we do not get discouraged and that we never put a limit on what our kids can do!


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