I cannot get our photo montage to link tonight, so if you will go to the "Home" page of this web site...see it on down the list to your left of the screen, you should be able to clink the tiny photo and link to the Mayo Clinic 2008 montage. Sorry!
Here are some photos from our trip to AL for evacuation, trip to Mayo, and our special visits while in AL at Nina and Pop's. Note Consuela was not able to be with us. Her sister was ill, and we all thought it best to give her time with her since we had Nina to accompany us. Don't worry, Aunt Laura, Uncle Bill, Mary and Buddy, we will be sure she comes up to the lake with us next time so you can meet her. DELIGHTFUL lady and a HUGE help to our very busy household!!!! She is actually still not here, but should be returning soon!! Much love to all of you!!! -CL

3 Generations.....

Granddaddy Horn and Addie Share Figs

And she just keeps amazing us!

Oh, and we learned this week that naked tricycle riding is even more fun than playing in the mud.....

We are back home and settling back into our routine. Our barn was repaired and the girls are back to riding their horses now that is is cooling off into the 80's. Mosquitoes are swarming, so we try to go outside mid-day to avoid them. We had a great time with our dear friends Nena and Michael from near Houston when they evacuated. They brought two horses and their tiny miniature horse, Honey, who will stay here until Thanksgiving. I will take pictures and post Honey soon., Funniest thing is that like a small dog, she has NO IDEA of her small size!!!
We begin homeschool PE class today at the YMCA, and the girls resumed piano lessons this week. Garrett was happy to get back to school to Mrs. Glo.
Garrett's new spring AFO's are working out well. I will post photos of them as well.

Addie woke up from her sedation EMG in a hilarious way!! She kept looking at me asking me how I got four eyes!!!! She came around in about 3 hours bbut was unsteady to walk until about 6 hours after the procedure. By evening she was 100% Addie. Our appointment with Dr. Engel, the CMS expert, was canceled, as the results of the EMG were normal, thus eliminating CMS as a diagnosis. So we saw Dr. Selcen again a few hours later with both children. She exlained that neither of the children have CMS and that she believes they both have a mild congenital mopathy. She said to continue the therapies, horseback riding and swimming and to come back to see her in two years. At that time she wants to do a muscle and skin biopsy on Addie from the back of her upper arm...her weakest larger muscle group. Meanwhile she expects them to both improve, but if we see regression, call her immediately to set up another visit. She was encouraged by the way Garrett is improving in all areas. She did not see Addie at her worse, but did see some of what we have seen. Overall, it's great news even though I feel a bit frustrated that our two children are struggling more than most with no explanation. All I should really do is thank God for His love and healing and thank you for your prayers and thoughts and well-wishes. I appreciate all of the calls, emails, etc., from you. Thank you for keeping in touch!!

 

On the home front, our house sustained NO damage in Hurricane Gustav although the eye passes just south of our home. We lost several pieves of tin off of our barns, but that will all be repaired this week.

We watch Hurricane Ike from Nina and Pop's home in north Alabama wondering what he will do. If he keeps on the westward track, we will likely drive home Wednesday. Oscar says the mosquitoes are out in swarms, so our outside activities will be very limited once we get home. Also, Oscar is working crazy hours with the hurricane efforts by the LA National Guard, so we would not see him any. We are enjoying catching up with friends and family. Today we visited with Buddy and Aunt Laura and Uncle Bill. We then dropped by to see a very dear friend who was the first person to give me the opportunity to barrel race on a horse named Buggie. I got to visit with Buggie, and he is 33 and is in great shape!! He blew into my nose and I returned the favor. I think that just maybe, I was a familiar, positive memory. His owners are the sweetest people, and I have been horrible about keeping in touch. I hope this rekindled a friendship that should have never settled for distance!!! James, it was a blessing to see you. I hope you have some idea how much your love and support meant to me as you gave me such a great opportunity and were such a positive force in my life. My love to your beautiful family!!!

 

There is a greyhound waiting for us to come home. We are ready to foster as soon as we get home, and there is a boy waiting for us to pick him up, AND he is good with kids and felines!!! We'll see!!!

 

Thank you again to each of you, and I hope you steer clear of hurricanes and have a great day!!

-Clara-Leigh

We arrived this week on Wednesday, saw Dr. Selcen, a delightful female neurologist, yesterday with Garrett and Addie. We learned from her that they did not see the type 1 fiber SIZE difference here when they looked at Garrett's muscle biopsy slides he had done at TX Children's when her was 17 months old. So the CFTD dx apparently doesn't hold water for these guys. SO then she said Garrett's delays and speech issues and even feeding issues do not match up with CMS so much. Addie looks more like a CMS type child. SO Addie is having a sedated EMG done now, and that will either confirm or rule out CMS. If confirms, then we can look to trying different meds to see how she responds, and if it rules out CMS, then the blood they are drawing during the sedation will be sent for genetics testing and can hopefully tell us more. Dr. Selcen also mentioned the possibility of a muscle and skin biopsy from the back of Addie's arm, which is one of her weaker muscles. Weaker muscles will tell more of the story , and with Addie being 7, her muscle shoudl tell us more than Garrett's did at 16-17 months. So we are waiting. Addie did GREAT going back for her test. She had some liquid Versed, so she forget she cared rather quickly!! I will post photos when we get back to LA. So now Garrett's dx is in the air. Don't know what we do from this point with him. We meet with Dr. Selcen and Dr. Engel this afternoon to follow up. I have even more questions now, and I fear I will have even more that will swarm after we leave!! Praying for Addie to be comfortable and that my mom is surviving Garrett all morning at the hotel. Thank God for Nina and Consuela coming with us!!!! We have had a good time. Addie has hit the Dollar Tree store near the hotel twice for some dolls and art supplies. We stayed up late last night working with the really neat American Girl clothing design kit last night. Addie has a real love in arts and clothing designing. She was having so much fun and was VERY proud to see her very first design on the paper doll model!!! Hugs and many thanks for your thoughts and prayers. We found out yesterday that we have power at home much earlier than was forecasted, and I will fit as much of this cool weather into my suiticase as I can to bring south!!! Current plan have us flying back to Birmingham, AL, tomorrow and then driving back home when things have settled down at home. Still very long lines for groceries and gas, and many very hot, frustrated people.

Clara-Leigh