Tim Got a Job!
May 19, 2004 by · Leave a Comment
Hello to everyone:
First of all, Tim got a job!! He will start with FedEx on Thursday. As most of you know, when you first hire on with FedEx it is part-time. We don’t know how long it will take for him to get full-time, but he will be eligible for benefits after 90 days. He has had to turn down job offers because some companies did not have benefits. We know the benefits with FedEx are outstanding as well as being a great company to work for.
Also, Savanna saw her pulmonologist last week. She said her chest x-ray showed the right lung does look better. Savanna continues to be on her vent most of the day. The most we have been able to get her off is 5 hours, but her doctor is not concerned about that. She feels that is entirely normally with the seriousness of what she went thru and the lung still healing. She did give us the okay to start using the Cough Assist machine again, so I feel that will greatly improve her right lung. I was so glad to finally get some good news for her, since everything lately seems to be so bad. I think if one more person tells me how bad her scoliosis looks I may have to shoot them. I see it; I really don’t need to be reminded of it. I can’t think of much that is more frustrating than watching your own child cripple before your very eyes and not be able to do one thing about it and then be told on a weekly basis how bad it is looking.
But, her spirits are great. She continues to be happy and said her 1st 2 word phrase yesterday: okay mama. Also, her speech therapist was thrilled to hear her use the “k” sound last week, because you have to use your tongue to make a “k” sound. Up until now, Savanna has not used any words that require her using her tongue. We are still waiting for the components to her power chair, so she is still not able to use that.
For those of you with children, you will be happy to know that Savanna has gotten herself in “time-out” twice in the last week. It’s somehow nice to see her acting like a normal 2 1/2 year-old! We had our 1st meeting with the school district last week and Savanna will go back for diagnostic testing in August. She will start school in September and will most likely go every day for 3 hours a day. I can’t believe she will be in school at 3 years old! She will receive all of her therapies at school while she is there. I’m sure she will love it and the teachers seem great. There are only 3 children in that class right now and 2 are boys, so they are thrilled to have another little girl. I’ve told them how much Savanna loves to learn and loves to have books read to her. She is learning her ABC’s, can count to ten and knows most of her colors. I expect her to be doing her mathematical tables by the time she starts school. (kidding:))
Savanna will see her neurologist next month and sees her pulmonologist again in 5 weeks. I keep hoping we’ll get the stuff for her power chair any day now so I can write you all and tell you how much she loves her chair. Also, we are planning her fundraiser for September so everyone mark their calendars. It will be a lot of fun!
Please continue to pray for healing for our Sunshine. She still has a way to go before her right lung is back to “normal”. I’ll keep you updated on her progress and also on Tim’s new job. Let the countdown to no more COBRA payments begin!!!
Love,
Mindy
Savanna Continues to Get Better
May 5, 2004 by · Leave a Comment
Well, I am again behind on getting out a Savanna update. Honestly, I don’t know where the days go. I can’t believe it’s already May! So, here’s the latest.
Yes, she got her power chair, but we haven’t been able to use it much because we are still waiting on the correct headrest and for the bar to hold the joystick and the correct battery compartment holder. I think once we get all the right components to it, she will really take off in it. Right now she has the tray with the sensors and I think it’s just too hard for her to grasp. We do think she will be able to do a joystick now, where originally we didn’t think she had the strength.
Health wise, she is doing much better. We are still trying to wean her off the ventilator and it is going much slower than I would like. We normally start with 2 hours off per day and then double it each day so it only takes 3-5 days. We have been weaning for her about 2 weeks and the longest she has been able to sustain has been about 4.5 hours.
Savanna did see her orthopedist at Scottish Rite today. No good news there, not that I was expecting any. Her scoliosis has worsened, but he doesn’t think it is significantly worse in 6 months. There are no bracing options for Savanna because it would compromise her health, not to mention her quality of life. Basically we can not do anything right now but continue to monitor it. There is nothing they can do to ease the progression and surgery is her only option, although she is much too young for that right now. Ideally he said between 8 and 12. The worst news was when he mentioned doing a halo before surgery to help stretch her spine. Yes, I said halo. The thing that attaches to the head by screws placed in their forehead. I don’t want to even go there. It’s not an option right now, so I am choosing not to think about it. I can only handle so much at a time and my cup is full.
Needless to say, it has been a very emotional day for me. Not that I don’t already see how curved her spine is, but when you see it on the x-ray it just hits you in the face like a ton of bricks. I am amazed that she doesn’t appear to be in pain from it. I can’t imagine how uncomfortable it must be. I mentioned to one of Savanna’s nurses, “I don’t know how she can be so happy all the time. Everything she goes thru on a daily basis, the physical struggles, knowing that she is different from other children as she watches them run, eat, play, have independence and yet she is still so happy nonetheless. She is such an inspiration to us all. She is so peaceful and content in her world. She will lay in her bed and look out her window and watch the birds (we have a birdfeeder right in front of her window so she can watch them) for hours at a time and just sing and talk to herself.
I just continue to pray these doctors and researchers will find a cure for SMA soon! And while there at it, find some new surgical procedure for her scoliosis that won’t compromise her health. Ahh, go ahead and throw a job in there for Tim too. What the heck???
We’re still hopeful FedEx will come thru. He had to take his W-2 forms to them last week so they could verify employment and we thought he might actually get to start work this week, but we got a call yesterday that he won’t be starting this week. Possibly next week, but the job still did not sound definite to me.
Oh, and we painted some more of the house. Don’t stand still too long around here or you might get painted. Tim REALLY needs to get back to work. I told him we could start a top 10 list of when you know you have too much time on your hands. I think number one would be this statement, which actually came out of his mouth. “You know, I think the trees must only grow at night, because I watch them every day and there is always new leaves in the morning.” That’s my husband for you, always the deep thinker.
So, I look forward to having some good news to share soon. The good news for now is that Savanna is continuing to get better. Please continue to pray for her healing and for a great job for Tim. As always, thank you all and I’ll be in touch.
Love,
Mindy