Prayers for Savanna
May 24, 2005 by · Leave a Comment
I just wanted to ask you all to pray for Savanna’s appointment tomorrow morning at 8:00 (sorry for the last minute request). She is going in tomorrow to have a new back brace made. As most of you remember, this is where they put her on a “table” that consists of a piece of gauzy tape about 4 inches wide and make a full cast of her trunk area and then cut it off. She will also have casts of her feet made for new AFO’s (orthotic shoes). Last summer when we did this she did beautifully and I am praying that tomorrow goes just as well. I have already talked to her about it tonight so she understands what we will be doing tomorrow and I told her that Mama would be praying her special angel would be with her tomorrow so that she won’t be scared and that everything will go well.
I would also like to ask you to begin praying for wisdom and guidance for us as we will have to make the difficult decision of which type of back surgery to do for her in the very near future. Her orthopedist feels that we cannot hold off much longer without doing some type of scoliosis surgery. Because of her young age, we cannot do a full spinal fusion because once that is done her trunk will no longer grow. Our options are then to either do growing rods or a titanium rib. Both surgeries would be considered a major surgery and would require hopsitalization for at least 7 days. They are also just temporary, meaning they are just to buy us time until we can do the spinal fusion surgery. The earliest they like to do spinal fusion surgery is 5 or 6. The problem with doing the growing rods or the titanium rib is that both involve additional surgeries about every 6 months to extend the prosthesis as she grows which carries a risk of infection each time.
I have already shed many tears over this new hurdle but am now trying to face it with a “brave face” and realize that it could greatly improve Savanna’s quality of life to not have such severe curvature, which is about 80 degrees at this point. If it continues to worsen, it could greatly impede her breathing ability. As her orthopedist told me, the surgery in itself is a risk because of the degree of surgery. It takes so much of her “reserve” that there is a risk of her not coming back off the ventilator. I know thru prayer and the strength and determination of Savanna that we can get thru this and she will do great, but can help but feel very emotional about the whole ordeal since it is my baby. As always, I would trade places with her in a heartbeat to protect her from having to go thru so much, but this is the path God has chosen for her. Again, my sweet Savanna is not in the least bit scared of all of this. We have talked about her needing surgery and she told me she is not scared. Her faith and trust in the Lord is truly amazing.
I hope you all will have the opportunity to read this email before our appointment tomorrow and can take a minute to say a prayer for my little angel. I will send an update email after her appointment and will assume that everything will go beautifully with all of our prayer warriors praying on our behalf. Thank you in advance for your prayers!
Love,
Mindy
Savanna is Doing Great!
May 8, 2005 by · Leave a Comment
Hello to everyone. I hope this update finds you all doing well. We have officially made it thru our first winter with no hospitalizations! That is great considering Savanna is even going to school this year. We’ve had our little bumps in the road, but I am happy to report she is doing wonderful. She is growing by leaps and bounds both physically and mentally. Our last report from her pulmonologist was great. She said Savanna looked great, her chest x-ray showed improvement and she was happy with her progress. We have also seen her neurologist since my last update and that was also a good report. She only sees her twice a year. Her neurologist, who is one of the leading SMA researchers in the country, did tell me that her goal is to have a treatment for SMA by 2007. Isn’t that wonderful news! It just confirms my hope that in the very near future they will at least have a treatment, if not a cure, for this terrible disease.
As always, I am in awe of Savanna’s daily progress. She is driving her power chair like an old pro now. It’s hard to imagine a 3 1/2 year old having that much control over something like that. She is now driving in the house a little bit and when we take walks, she actually drives on the sidewalk instead of out in the middle of the street. I realize it may not sound like that much to you all, but it really takes time for them to gain control of their chair. She knows her left from her right so that helps in teaching her to be a good driver. She drives her chair from her bedroom in the morning out the front door to the bus. That’s amazing considering she really didn’t start driving until January. I remember becoming so discouraged and thinking she would never drive it, because she really did not have the desire. I almost feel like she gets performance anxiety. I think back to almost 2 years ago when we were getting her fitted for a power chair and we had to go with the tray instead of a joystick. I remember how my heart just fell to my stomach as I watched her and realized how weak she really was; that she was so weak she did not have the strength to push or pull a joystick. Now I see her driving her joystick controlled power chair, turning around, spinning in circles, driving off curbs. She thinks it’s funny to start heading right for the curb and drive off it and her head bounces all over the place all the while her Daddy is yelling “Stop” with this look of sheer panic on his face. I just sit back and chuckle because it’s his fault she has that daredevil spirit. Need I remind you all this was the guy who started a bungee jumping business back in the late 80’s? Savanna just goes, “ha ha ha”.
She is talking a lot more now and is starting to use more sentences and phrases. Another huge milestone since we were not sure she would ever talk. She also has her first crush. And it’s an older man at that. My niece, Bailey, has a “friend” named Jacob that Savanna thinks hung the moon. He is 15. She even allowed him to join in her tea party, which I must tell you is a special privilege. She’s quite possessive of him as well. She thinks he needs to be at her beacon call, just as any good princess would think. She can’t pronounce the J in his name, so she calls him, “Hacob”. She’ll say, “Hacob, right here.” Now somehow she has managed to get a Boston accent on the word “here”. It’s quite amusing to hear her say that. I think she is a diva in training!
The last Quest magazine thru the MDA has a great article about power soccer and chores for handicapped children. It looks like there is a power soccer league in North Richland Hills, but she can’t start until she’s 4 or 5, but it definitely gives us something to look forward to. I think she would love it. It also talked about having chores that your child can do so they feel like they are contributing to the household. Ironic as it is, that is something that I have thought about for a while. I can’t really ask her to make up her bed or do the dishes. So we have found a “chore” she can do. She loves to go get the mail. Of course it’s a race to the mailbox in our home because her Daddy loves to get the mail too. She drives her chair out to the mailbox and I get the mail and let her carry some of it in the house. I always say it’ the little things in life! She loves feeling like she is my big helper. She also likes to help suction her mouth, count for me while we do her cough assist and remind me what all we need when we take her somewhere. I’ll say, “Hmm, what am I forgetting” and she’ll say, “Backpack, suction bag, back brace on.” It makes life sooo much easier now that she can talk and tell us what she needs. She will tell me, “more suction” or “help my arm” whatever else she may need.
I appreciate everyone’s prayers for Savanna and for her angels to keep guard over her. She did have a rough day this week. I think I was more traumatized than she was by this latest one. She had been suffering from allergies/head cold related stuff and had missed a few days of school. On Tuesday I decided to try and send her because she seemed to be better on Monday night. I got a call around 8:15 that she was having a hard time and her school nurse was administering a breathing treatment because she was wheezing. I was at work and it just so “happened” that one of my wonderful ladies was standing there when I got the call, so she offered to watch the club so I could go pick her up from school. I also just “happened” to have my van because I had initially left it with Tim in case Savanna needed to be picked up early from school. We had tried to call him, but he was nowhere to be found. Let me just ask, do mothers ever forget to keep their cell phone with them when they know their child might have a hard day at school and need to be picked up early? Now I’m not naming any names here, but someone went to eat breakfast and did not take his cell phone in the restaurant with him. Hmmmm. It sort of reminds me of the scarecrow from Wizard of Oz, “If I only had a brain…” So, by the time I got to school (in record time, probably about 4 minutes after the call), Savanna was in full blown respiratory distress. Absolutely no color to her and they were “bagging” her with the Ambu bag. The oxygen tank just “happened” to not work and so they had 911 on phone. I saw her and said, “Oh my God.” I rushed over and picked her up and started suctioning her and trying to calm her down. Within about a minute, she was talking again and was much better, so I told them to cancel the ambulance call. The paramedics still came and I think Savanna was quite pleased to have 3 nice looking young men paying all that attention to her. She had quite an audience with the principal, both school nurses, the teacher and now the 3 firemen. Luckily the children were not in the classroom because they were all out at recess. I told Savanna she just wanted to see her principal that day (which I LOVE her principal) and they probably all needed to go change their pants now. She managed to get herself the rest of the day off from school after that incident. 
The reason I put “happened” in there was to just show you all that once again, God was in complete control of my little angel. As I drove her home from school I was just thanking Him for never leaving her side. I know it is no coincidence that with the series of events and everything that occurred she was still fine. Those are the days that I just want to take her home and never leave her side, although I do think she was tired of her mother “hovering” over her after that. I asked her later about the incident. I said, “Were you afraid when that happened this morning at school?” She said, “No.” I said, “Really, you weren’t scared. How come?” She said, “Angel”. Now the tears are pouring freely. I asked, “Was your angel with you today when that happened?” She says, “Uh-huh.” When I think back on it, she really wasn’t scared. Once the episode was over, she was talking and smiling like it was no big deal. I am always so grateful for the peace and joy that God grants her. We now have daily conversations about her angel. I had asked her a few weeks ago about her. I was holding her in her room and she was looking back at the doorway. There was no one there, but she clearly saw someone as her eyes moved from the doorway over to the side of the bed. I asked her if she saw her angel. Uh-huh. I asked her where was she. On the floor. What color was she wearing today? Yellow. Does she go to school with you? Uh-huh. Does she ride the bus with you? Uh-huh. Where does she sit? By Miss Teresa (her school nurse). Does she get Miss Teresa when you need help or are having a hard time? Uh-huh. It’s funny because she is just so matter-of-fact about everything.
I’m so thankful that all the times that death has tried to take her away, God always intervenes. I find myself thanking him for divine intervention, as was the case this week. It never gets any easier. I always feel that pit in my stomach when we have these emergencies. I am so thankful that He just works thru me and directs my every move. I usually crash several hours later, after the magnificence of the situation has had time to settle in. I always tell her she is my special gift from God and she really is. She just has the sweetest spirit. I know that we share a special bond because every time these “things” happen, I just “happen” to be there. I thank you all for your prayers in that area.
I am attaching a picture of Sunshine in her Easter dress. In this picture she is in her manual wheelchair because her powerchair was in the shop at the time. She loves getting all dressed up and enjoyed hunting for Easter eggs. Every day with her truly is a gift of joy. Don’t forget that her fundraiser is scheduled for Aug. 27th. We are hosting it at the Will Rogers Roundup Inn this year and the tickets are $30 per person. We are trying to confirm that we will have a live band and will do dinner and casino again. Please email me with any questions.
One last thing, Tim did not start his morning route yet. They had some changes at work and were not going to have a morning route after all and it was possible he was going to get an evening route (3:00-9:00). I had prayed all along that God would open up the perfect route for him and although I wanted it to be mornings, I was trusting Him to provide the right one. He will start next week on the evening route, but as soon as a morning route becomes available, it will be his. He won’t even have to bid on it, should he choose to take the morning route.
I just continue to ask for your prayers of protection and healing for Savanna. Please continue to pray for the week I go to Mexico with my sister-in-law Kelly. Please pray that we will have supernatural protection, healing and just a great trip as well as a good week for Savanna and Tim. My parents did finally get moved into their new home and are really enjoying it. For those of you that know them, we are planning a housewarming party for June 25th. My mother doesn’t think we should do that, but I told her that they deserve one for moving into a new home after 36 years. Please also pray for strength for me. The bigger Savanna gets, the more my body feels it. One last thing, please continue to pray for a wheelchair van for us. We are getting by just fine with this one, but the bigger she gets, the more difficult it is to get her in the carseat and get her comfortable. In a wheelchair van she will sit in her wheelchair while riding in the van.
Oh, I forgot to tell you that for those of you that remember Darrell Alan, Savanna’s little friend with SMA, he now has a healthy, SMA free baby sister!
As always, thank you all for your love, support, encouragement and prayers. I know how blessed we are to have such wonderful people in our lives!
Love,
Mindy