You'll never believe this, but I'm so technologically challenged that I never saw your last post. I'd love to get together with you - - and/or get the boys together. I have a 7 year old daughter also. How perfect! We just returned from Dr. Wong's and will start steriods soon. Did you already do this? Your welcome to come our way for a play date. Jake attends preschool m, w, f mornings and then it's off to kindergarten next year:) Crazy!
Funny, I was just thinking about you all too. We decided to visit San Diego during the holiday and arrived on 12/31 and left on 1/4. I was thinking how nice it would have been to come by and see you, but I ended up being terribly sick the entire time with a sinus infection. It is awful as I am still recovering. I did not even go to visit our friend Jarryd who has SMA2, the reason being, I do not want to expose anyone else to getting ill and being in the hospital. We can never be too careful for our boys. Perhaps another time.
Anyway, thank you for thinking of us and keeping us in your prayers. We are still not in a home and are still waiting as the Lord teaches us more patience. The home we bid on on October 15 is still in the process as it is a short sale and there are three mortgages. The bank that holds the first and second has been the problem. We still pray and really feel this home is meant to be us and will be the best home for our needs but it is still touch and go as another buyer has entered the picture but thankfully they have two obstacles in their way, so it should still give us a chance. I hope one day soon to give the good news that we got it and what a story of God's Glory it will be.
I am sorry to hear of the struggle with the steroid, but I know has hard as it is for you, it will be great for precious Tanner. I have learned so much about how it helps DMD boys and by just watching the salt intake and their food intake, having portion control and healthy choices can improve so much for them with steroids. You are in good hands with Dr. Wong's suggestion. Praise God for that! Keep me posted and perhaps one day soon we can meet. We would love to see Cardiff by the Sea. We love Carlsbad and Benihana there and the outlets now that we finally got to shop there. It was sure cold in San Diego though. I would love one day to host a get together at my home with all the Southern Ca. Families. It will be awesome when we finally get this God given home and can utilize it for his Glory.
Glad that you found Dr. Wong to be so good. I haven't been very impressed with local professionals, so I'm eager to have access to someone who is an expert. I would love to get the kids together AND get together with local moms. I think we would all benefit tremendously. I'm happy to have everyone at my house. Or maybe moms could meet for coffee/lunch.....
Hi. Thanks for writing back. So far, Jake is pretty indistinguishable from peers. He is noticing he runs slower, but that would be the only noticeable thing now. We're going to see Dr. Wong in February. I'm so thankful that we found out about a place that specializes in DMD. How is your little guys doing? Is there a mom's night out group in the area?
We're doing pretty good - Cole is settled back into school and is in 4th grade. I can't believe it! Justine is getting ready to turn 19 and I don't know which is worse - having a daughter that is an adult or my baby being in 4th grade. LOL
It has been a long time since we've talked. How are Tanner and Pria doing? Our next trip to Ohio is the week of 11/10. When do you go? I haven't even started to prepare quite honestly - I am a horrible procrastinator. Do you still have my numbers? If so..give me a call. I'd love to catch up and hear if things are shaping up down your way, especially with your clinic. Mine hasn't changed - I dread every trip and resent taking the time off work just so the doc can announce proudly that Cole is still walking - like I didn't know that when I walked in with him, huh?
Anyhow- I'd better get that kid to sleep. He's had two late nights and he'll be a brat at school if I don't get him to sleep soon.
Take care and call or write when you have a few.
Yea, you make #16 of our Christian Group. Welcome. I just started this group Wednesday and to have 16 strong in less than a week is amazing. Love your picture. When you can send me your prayer request to firstname.lastname@example.org. We have started a prayer sheet that I have emailed to those those who have already done so, so I would love it if you would like to join us.
Hope you and your family had a wonderful weekend? Do you have any questions for me regarding your son with DMD?Since I have been down that road,I'm the perfect person to ask,so feel free to ask me anything.
I have a picture for you. I don't know if Christian told you about the poster we made of the boys for Kicks for a Cure, but I have a framed 13X16 poster of Elijah for you. I was going to give it to Christian, but would love to give it to you. You'll have to let me know when you get back to CA. ~ Traci