Savanna’s Blessings
Well, it’s 3:00 a.m and I can’t sleep, so I decided I needed to write a much overdue Savanna update. My heart is heavy as we are waiting to hear about another girl in our SMA family. As I lie in bed praying for Kalair, I also can’t help but be so thankful for my own miracle child. It’s been a tough year. We have lost more SMA children that we have personally known this last year than in our entire lives dealing with this. Talk about a wake up call. I am now asking you all to pray for Kalair and her family. They don’t live here; not even sure where they live; somewhere up north. She is 7 years old and also a Type 1. She went into the hospital this weekend with some type of virus/illness. She, as well as a lot of other Type 1 children, is on a specialized amino acid diet. It is a diet that many SMA parents swear by, obviously giving their children more strength. We looked into it for Savanna, but I never felt at peace about it and I also spoke with a few of her specialists who felt she was doing great on the diet she was on that we should not change things. The short of it is that the amino acid formula must be double diluted for SMA children, otherwise it may be toxic to their systems. Kalair, although in ICU, was doing rather well and improving. However, somehow the hospital did not dilute her formula properly and she is now unresponsive and MRI shows damage to her brain. So please pray for Kalair to have a full recovery and for her entire family. We just lost one of our Texas babies last week, down in the Houston area. It is times like these that I feel so blessed and privileged to have Savanna. We went thru our own scare with her last Sunday, another familiar reminder of how fragile her life can be. We had gone to Waco for the day and being on the road so long dried her out. She got a mucous plug in her airway when we were headed back into town and by the time I ran her into the house, she was pasty white and starting to lose consciousness. Another grim reminder of life with SMA and another night of me feeling guilty of what she has to go thru.
But there are always the “Savanna blessings”. Thank goodness for those. That is what keeps me going each day. After she recovered from her episode last Sunday and I am hovering over her crying, we talked about what happened. I told her she could have timed it a little better since we had just lost Mia, the little girl from Houston the day before and Mommy was a little stressed out. She says, “I’m sorry Momma. I won’t do that again.” She said this one scared her too, but as always, her angels were right there. As I am lying there holding her and wondering how I can run to the store and buy her a horse (she always asks for one and at times like this I would fly to the moon if she wanted me to) she starts telling me that her head hurts and she doesn’t feel good. The mommy guilt thing is kicking in as I am thinking, “Wow, I guess I would have a headache too if I had just gone thru that, not to mention the back-to-back breathing treatments she just had.” Okay, so I am feeling so bad for her and she is really milking this thing as she then says, “I don’t think I can go to school tomorrow; I think I won’t feel good tomorrow.” Aaaahhh….she’s BACK!!! Nice try, I tell her. There will most definitely be school tomorrow. I will let her sleep a little later and take her to school rather than riding the bus though. Can’t blame the girl for trying, huh?
I’m so glad to see her pull the normal 5 year-old stuff like that. I love when she foresees the future and claims that she probably won’t feel good tomorrow. It’s not the first time she’s tried this. She’s done that before until I remind her that the next day is library day at school and then she gets a miraculous recovery and decides that maybe she’ll be okay tomorrow after all.
s some of you know, she just got her hair cut off last month, 10 inches. She wanted to donate her hair to Locks of Love so another little girl could have her beautiful hair. She wants to know what the little girl’s name is, but I told her we don’t get to know that information. She’s been ready to do it since the Fall after she saw Aunt Teresa donate her hair. Mommy just needed a few months to come to terms with it. She looks so cute with her hair shorter, but she certainly looks older. She immediately liked it. Says she likes it long too, but she likes it. She’s into all the typical pre-teen stuff. Yes, she is 5 going on 12. She’s been boy crazy since she was about 3 years old. She was sad to see Sanjaya get the boot on American Idol, but says she likes Jordin, amazing since she is a girl. She LOVES Zach and Cody and insists that they come to Texas to meet her and spend the night with her, but she does specify only Zach; Kaitlyn (our neighbor) can have Cody. We went to see one of her specialists about a month ago and she is cruising along in her chair as she comes thru the door until she sees the cute boy sitting in the chair by the door. She stops her chair dead in its tracks and just inches by him, going ever so slowly while just staring at him and smiling. It’s pathetic!!! The worst part about it is that he was like 15!!! I told her to stop flirting with the cute boy and come on already. I’m afraid to see where it goes from here!
We have contacted Make a Wish and will be going to Disney World this October for Savanna’s wish. We are so excited! We’re taking a caravan down there so anyone is welcome to go with us. Another blessing has been Savanna’s new best friend, Delanie. I had been praying for God to bring along a friend for Savanna. That’s one of the hardest things we deal with is her having a friend that will come over and play with her and help her by holding her arm for her and including her. She has other little friends and they are great too, but usually they tend to forget about her once their able bodied friends are around. Just normal kid stuff. Delanie has been a Godsend. She loves Savanna unconditionally and plays hide and go seek with her and helps her play by holding up her arm and just everything. And Delanie is such a wonderful child who comes from a great family. A few months ago when Isabella was in the hospital I went in Savanna’s room to tell her and Delanie about Isabella and tell them we really needed to pray for her. They both stopped playing and closed their eyes and said a prayer for her right then. Savanna knows that is something she can do for people. When I was really stressed out last week and had a bad day she said, “Why are you upset Momma? I can pray for you.” I was so touched by her sweetness and kneeled down next to her so she could pray for me and she says, “but not right now. I’ll pray for you later.” Well she got me to laughing. I’m glad to see that she never loses her sense of humor.
As for us, we’re just plugging away here. I am almost thru this semester and have signed up for summer school. I’m hoping to get these last 2 classes done this summer so that I can apply for the January nursing class. Tim is still part-time at FedEx. He looked into changing jobs, but nothing ever came along and we felt he should just stay where he is at. He has been there 3 years now and so he will be fully vested in 2 more years. We’re still praying for a full-time day route to come open for him and he does lots of side jobs in the meantime. We have pushed the fundraiser back to November 10th, so mark your calendars. We will be having a rummage sale for Savanna/fundraiser sometime in the next month, so if you have anything you would like to donate, let us know. Life has been pretty stressful for us, so I appreciate you keeping us in your daily prayers. Give your kids a hug and be thankful they are healthy. One last thing, I have to brag about how strong Savanna has been getting. She has been holding her head up and yesterday in therapy she even held her trunk up for a few seconds. I know that is a result of all the prayers for her and she is still praying daily for swallowing. She has a new occupational therapist who is working on oral motor skills so I believe we will see great improvement there and am awaiting for her swallowing to return. As always, thank you all for being a part of our lives. We are blessed beyond belief! Here’s a few pics of Savanna. One from Spring Break and one after her haircut.
Love,
Mindy
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