Tuesday, October 28, 2008

Adam's MRI & EEG

Adam had an EEG & MRI done at ACH on Monday. He did really well. We did the EEG first, and Adam DID NOT like it at all....they glued 24 wires to his head and he cried the whole time with Jeff holding him still. Then, she said, "OK, now I need him to go to sleep". Jeff and I just looked at each other, both thinking, "There is no way he is going to go to sleep after that!" Jeff stayed in the room and laid down on the bed with him while I waited outside and started praying. I also called my Mom to ask her to pray that he would settle down and go to sleep. After about 5 minutes I could tell he had stopped crying, then 15 minutes later the tech came out and they were done! The power of prayer!

I had a meeting at work that I had go to so I left for a while and got back just as they were starting the MRI. They already had him sedated and in the machine. Jeff said that he did pretty good, although he DID NOT want to put on the hospital pajamas (I don't blame him...they were a little itchy!). The nurse gave him about 50 stickers which seemed to have made him happy. He went to sleep with a death grip on them! The MRI just took about 20 minutes, and Jeff carried him back to a little recovery area where he slept for about 15 more minutes before we started trying to wake him up. He did not want to wake up at first, even after a cold wet washcloth on his head. Then the nurse put a little bag of Teddy Grahams in his hand--his eyes immediately popped open and he started stuffing them in his mouth!! Poor baby had not eaten since 6:30 a.m. and was starving! He ate two bags of Teddy Grahams in about 5 minutes. Jeff and I were laughing at him--Adam is definitely one who is motivated by food! We stayed for about 10 more minutes and headed home. Adam was feeling really good and quite silly after his little dose of medicine. He stumbled around for a little while and was completly back to his fun little self in no time at all. Kids are so amazing....if I had been through what he had I would have headed straight for the bed!

Now the good news.....thanks to my colleague (Medical Record Director) at ACH, I already have the results of the MRI and it was NORMAL! Praise God! We really did not expect them to find anything, but we are happy for this confirmation that we are on the right track. We should have the results of the EEG by Thursday, but again I expect that it will be completely normal.

I must say, anytime that I am feeling down about what Adam is facing, I need make a visit to Arkansas Children's Hospital. Jeff and were again reminded as we walked the halls at ACH how blessed we are to have four healthy children, and although we know that Adam has some challenges ahead of him, this pales in comparison to what some families are facing.

Thank you to all who are praying for Adam and for our family. We truly feel God's hand at work sustaining us through each day.

Thursday, October 23, 2008

Music to my Ears!

October is always a busy month, and obviously I am behind with my updates, but I wanted to share a wonderful moment that I experienced last week.

One night last week Evan and I were playing Hide & Seek in our room. Actually, he was just hiding behind the curtains and would come out squealing when I would ask, "Where did Evan go?", and of course I would appear absolutly astonished and surprised at his magical appearance! After a while, Adam decided to come in to join us. I was so amazed because generally he does not join in when we are playing and avoids this type of chaos. However, this night he came right in and began hiding with Evan, and joined in the squealing when it was time to reveal themselves. We had a ball! Then, even more amazing, Adam went to the bedroom door and turned around and said, "Come on, Bubba". (It wasn't quite that clear, but I could tell from his gestures what he was saying). He wanted Evan to come with him! I got so excited I said, "Evan, Bubba wants you...go, go, go!!" Evan followed him and Adam shut the door behind them. After a few seconds, he opened the door and they both came running back in--Adam squealing and Evan yelling, "We're home!". I was thrilled!

You may wonder why this small game was so exciting to me. As a Mom of twin boys, I've had this vision of them being best buddies and playmates. Until that moment I have never really seen them playing together. It was also the first time that I have seen Adam initiate play of any kind. Those three little words...."Come on, Bubba"....were truly music to my ears. A glimmer of hope, and the best game of Hide & Seek I've ever played!

Saturday, October 11, 2008

15 Years

October 9, 1993
Jeff & I celebrated our 15th anniversary on Thursday (October 9th). Actually, between work, school, soccer, and taekwondo, we barely saw each other on Thursday. We did celebrate Friday night with dinner at Cajun's Wharf and then on to The Rep to see Les Mis. It was so nice to have dinner without having to cut up four plates of food or cleaning up the floor before leaving! The show was the best we've ever seen. Seriously, it was even better than most that we've seen on Broadway!

How about those then & now pics? I think we've done pretty good! I truly can not believe that it's been 15 years since we started our life together. It has been an incredible journey, and I can't imagine spending my life with anyone but Jeff Johnson. Here are my most memorable moments of the past 15 years:

1993 – Cream….Gold….Gardenias, October 9th – Our Wedding
1994 – North Carolina, Weekends Home, Hours on the Phone
1995 – London, “There was a king of York…”
1996 – Our First Home, Driving the Blue Ridge Parkway
1997 – October 24th – Emma Kate
1998 – Australia, Emma as Raggedy Ann
1999 – “Bobble Silk-Silk”, Paw Paw, "Can Emma Come Out to Play?"
2000 – April 9th – Paw Paw’s Homecoming Day, Hawaii
2001 – Our First Beach Vacation, Monkey Party
2002 – Disney World, September 19th – Ethan Daniel
2003 – 10 Years! New England Cruise, Kindergarten
2004 – Emma's Baptism, Jeff to China x 6, $7000 Phone Bill (Oops!)
2005 – California, Disneyland, July 21st – Owen James
2006 – Bed rest, Prayers, June 1st – Adam O’Neal & Evan Callahan
2007 – Nursing School….2 babies…..The Rest is a Blur
2008 – Bicycling Through Seaside, 2 Two-year-olds....Will We Survive It?

I can't wait to see what the next 15 years have in store for us!

Monday, October 6, 2008

Adam's Story

Last Friday, KARK did a story about a national study that ACH will be participating in studying all types of developmental delays, including autism. Mal called to see if they could interview Adam & me, and of course we were happy to help! (Anything to be on TV, right?) They came to the school and taped the interview on the playground. You can watch it here:

Adam was a little afraid and didn't want me to let him down. He did let me put him in the swing, and they got a cute shot of Evan pushing him. Evan, of course, was hamming it up for the camera. He would slide down the slide and look at the camera to say, "Want me to do it again?". Then he would throw the ball to me and turn to the camera and say, "I throw the ball to my Mommy!"

I told the reporter as we were leaving to try to make me sound halfway intelligent, and I think the piece turned out really good! I told Jeff I only wish I hadn't used the word "devastated". We know what devastated feels like, and compared to that, this challenge with Adam is so do-able. If I had to do it over again, I would say this is difficult, or maybe challenging, but definitely not devastating.

Adam, by the way, is doing great. We continue to see progress daily, and are amazed at how far he has come in such a short time. Every day we are hearing new words (today's new word was "helment"--he was playing with a Star Wars toy), and he is making much better eye contact. This weekend during Emma's soccer game, he was playing Ring Around the Rosie with Evan and some of the other siblings and having a ball. Amazing! Two months ago he wouldn't have cared to participate.

Last week we saw a Neurologist at ACH who said she does not see any evidence of a neurological disorder, but wants us to go ahead and do an EEG and an MRI (under sedation) just to rule things out, so we are working on getting that scheduled. She was a little concerned about the tone of his legs and his "toe walking" and wants Frances Allen to go ahead and do a PT evaluation--they will be doing that this week.

Today, he moved to a new room at school so that he and Evan are separated to help encourage him to be a little more independent since Evan tends to do most of his talking for him. (I think Evan tends to do the talking for most of the class.) His new teachers went on and on about how great he did and how sweet he is--they love him already!

We continue to be amazed at God's provision for our family. Thank you to all who are praying for us, and please keep Adam and his continued progress in your prayers. We do have a long way to go, but as Jeff's Dad used to say, "This is a starting point. We can get there from here".