Spiritually: Chad & I are coming together for what we are calling "our crazy prayer". We are praying for full & complete healing of Bebe. Head to toe, inside and out, whole and complete. It sounds crazy, we realize. But, it's not too big for God. So, hey, why not just go ahead & believe in something that can ONLY be done by God. So, we are not only praying, we are believing. And if His plan is even BIGGER than just a mere healing---that's good too. Ultimately, He has some sort of plan for B. I can't wait to see it all unfold.
Medically: We have a wealth of doctors now on board to face the medical side of the syndrome. We, of course, have her pediatrician. We don't see her much more than the average child, except for this time of year. Bebe gets a Synagis shot each month. Synagis is also what you may hear me refer to as her "platinum shot". That would be because each month's dose is about $2,000.00. Yes, you read that correctly. Thankfully, she only has to have it about 5 months a year. Synagis helps her body combat RSV. If she were to get RSV, the shot would help make her case less severe. Last year & this year, RSV could be fatal for B. So, we get this shot to keep her a little safer. Next, we have been put out to about every 9 months with her Cardiologist. That is down from about every 1-3 months. Since the surgery was so successful, they feel we can back off follow up visits. We also have a geneticist on board. He seemed extremely pleased by how well she was doing & her overall strength. He set us up with a Neurologist and an Endocrinologist. We will see them in the summer. He also explained that one of the biggest fatal complications with WHS (Wolf Hirschhorn) has to do with renal issues. So, he set Bebe up for a renal ultrasound. The ultrasound showed "some bright spots". Because of this, they want us to follow up with a Neurologist. They said they did a little research and found another little girl with WHS who also showed these "bright spots" in her ultrasound. They followed her & found that by about 5 years old, the spots had completely gone away. She had no renal issues. So, we are just praying that whatever these "bright spots" are (which my dad calls her fairy dust) going to just disappear. God can do it, no biggie. The way we view it, we don't mind getting new doctors on board. We view it as a bigger audience to watch what God has in store. So, bring em on! Let's see.....I think that is all of our medical team. The ones we have met already are great. They all have a similar pleasant surprise to them as they watch B flourish. Her pediatrician is a believer already, and so I think she REALLY understands that it is all God---to HIM be ALL the glory! And we thank Him for our fantastic medical team to help us out.
Developmentally: We are now working with physical therapy, occupational therapy & speech therapy. We have the great opportunity to work with "Hand in Hand" and they are simply amazing. Bebe learned to sit on her own by 11 months, she is standing for a few seconds by herself, she is instigating attempting to walk, she is babbling & jabbering......she really is remarkable. WHS is quite broad spectrum and all the amazing people with WHS are different. There are WHS folks who are unable to speak or walk, there are WHS folks that are able to speak in short sentences & help with daily functions. Heck, even "average" children's learning rates are quite different. So, it is similar in the "special needs" arena, as well. I am encouraged that B is really progressing & becoming more "present" every day. The first year, she was quite disconnected from the world. At home & with family, she would open a little. But, she has really come out of her shell. We are so encouraged by her fabulous progress. There is just no telling how much Bebe is going to end up being able to do.
Life: Life is challenging & busy. But, that little one is so worth it. I guess it just feels like life as usual. We don't really know any other way. When we are overwhelmed, God always finds a way to encourage us. We are so very blessed. Sometimes I almost can't contain my emotions about it. I am so proud of B & I am so excited about what God has done and is GOING to do........can hardly contain it!
Beautiful words Lori. To God be the glory for what is in store for your family!
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