Posted 2015-01-26T16:18:00Z

January 25, 2015: Three Things

Edward on sled
[Edward watching Henry sled]

I have three things to tell you...

Thing One
First, thank you for the miracle! Of course, the miracle was God's, but the prayers that solicited it were yours. The afternoon and evening of my last post we received many messages of encouragement and promises that people would be praying for Edward. That night was the first time in weeks that Edward slept quietly all night long! He was so quiet and calm that I woke up several times in a panic and ran to make sure he was still breathing. The next morning I was giddy with the amazing realization of answered prayer. Kameron and I knew that God had sent us a message of love--that whether Edward was getting better or worse God was with us. We felt chastised about our lack of memory. The Lord had given us evidence of His presence and interest in our lives more times than we could count, and yet we were like the Israelites and kept forgetting. We knew that Edward might go back to his screaming nighttime awakenings (he did), and that he might not suddenly be better (he wasn't), but that it didn't matter anymore, because we knew God was there through it all and would take care of us.

We're happy to report that though God did not see fit to bring Edward completely back to his high point right away, Edward did begin to make slow improvements, again, for no medical reason we could understand. And now, almost seven weeks later, Edward is right back on track. He got a walker for Christmas. As it's just like the one the physical therapist had been using with him, he immediately got excited about using it and has since learned to navigate all over the house, through parking lots, up elevators, on different types of flooring, up and down ramps, and even in snow! He and Henry have a lot more fun, now that they can both stand up and chase each other! Here's a VIDEO of Edward with his already-beloved walker.

1st day with walker
[Just moments after Edward's grandparents gave him his new walker]

His "speech" has improved, in that he babbles more often and with more varied sounds, he is slightly more willing to at least attempt to say something when we ask him to, he started nodding a non-verbal "yes" consistently a few days ago, and he said "uh-oh" this week very clearly for the first time in what seems like forever. He is also suddenly learning signs with little effort and using them spontaneously. When he saw me fold my hands the other day he smiled and signed "Jesus" and then folded his hands and bowed his head. Keep in mind his age of 2 years and nearly 4 months, and you can see that he's about a year behind, but each step forward is amazing for us, and we are so grateful!

Thing Two
We figured it might be time to tell you we have a new baby due in a little over two weeks. The Lord has blessed us with this newly mobile, communicative Edward just in time for the baby's birth, and we know this is no coincidence. Praise God for His attention to detail and perfect timing! Both boys are very excited about the new baby. Edward shows his excitement by hugging or patting my very large belly when we mention the baby. He has also learned the sign for "baby." Henry has been especially interested in knowing what the baby looks like each month of gestation, talking about what its name will be, and telling us how he will hold it and take care of it when it's born. If you ask him whether it's a boy or a girl, he will tell you (accurately), "We don't want to know. We want it to be a surprise." The Lord has mercifully allowed this to be my easiest pregnancy, and we expect a normal, healthy birth.

My view
[What I see when I look down]

[About a month ago in Tennessee for Christmas]

Thing Three
Some of you may have heard about the troubles my sisters have experienced over the last year. I want to just mention to you my middle sister, Elizabeth, today. She and her husband David have four children, the youngest of whom is James (19 months old today). Several months ago James was found to have an extremely rare genetic mutation, but its implications were unclear until a recent visit to Mayo Clinic in Minnesota. It was there, through a series of MRIs, that James was definitively diagnosed with Alexander Disease. It is an extremely rare leukodystrophy with no cure. However, the Mayo doctors were encouraging them that James can be treated--and so he is...with weekly speech, occupational, and physical therapy appointments. They are also watching closely his nutritional intake. People with this disease often have a hard time getting proper nutrition, and mealtimes are a challenge for James. James' symptoms are still relatively minor, and his growth and development are slowly progressing, though not at all on pace with other children his age. We know this disease is not a kind one, and we ask that you pray that James' quantity and quality of life extend farther than expected, that his family will enjoy each day together, and mostly that the Lord will come soon. Your prayers have made such a difference in our lives, and I now beg that you please, please pray for our precious nephew and his family.

The Wrights
[David, Elizabeth, Lauren, Matthew, Maryanne, and James Wright in August]

[Elizabeth and James in October]

Thank you, again, for all your prayers and words of encouragement. They mean so much to us. Here are a few more pictures from the last several weeks:

[Backyard sledding this week]

Em sledding
Susan
[With my awesome midwife, Susan]

Coat could zip
[Back when I could still zip my coat]

Lowe's
[Part of our first public outing with the walker--Lowe's is a great place to run around with a walker!]

Hospital 1
[At the hospital for an appointment--It's just so wonderful and surreal to see Edward standing up and exploring places with Henry.]

Brothers 1
[Brothers in the snow]

Brothers 2

Sabbath walk
[Edward watching Kameron and Henry throw snow at each other on our Sabbath afternoon walk this week]

[Doing OT in a special balance chair we're borrowing from Early On]

[Christmastime on a carousel]

Carousel 2

[Horner's Syndrome is pretty obvious in this picture from December. You can see that the right side of Edward's face is bright red (on the left side of the picture).]