* As you know, Battley saw the Palliative Care team at Batson Hospital. These people are so very special to us. This is Battley's main number 1 doc. I would like to share soon what he did for our family, but know that he went more than above and beyond. Battley and Superman Dr B:
This is from Hayden Casavechia's Family:
I met Hayden's mother, Lauren, at an event I spoke at a long time ago. They wrote an article about it, but I never posted it because I did not care for the way they used my words. Here it is just because it is an adorable pic of B and you can read more about Hayden. http://www.ummchealth.com/news/default.aspx?id=2147508834
Hayden and his amazing parents:
About Palliative Care:
2) The Connection
670c Hwy 51
Ridgeland, MS 39157
* This was our church for many years. We recently visited with Battley and were reminded of the premise they started with...if one person comes and brings/tells one person and when that person does the same and so on... then there could be no limit to the Eternal Impact!
The Connection is a missional faith community that focuses on nurturing
children from diverse situations and backgrounds. The Connection was
begun by the United Methodist Church to "connect people with the love of
Jesus" and over the past ten years has evolved into an outreach
ministry primarily caring for children. All contributions are tax
You have all been SO loving and supportive of us and we THANK YOU. This is not easy and we are only comforted KNOWING our Battley dances with Jesus now. We haven't been able to keep up with the calls, texts, emails, and messages. We know we have missed a few visitors too. Please know we read each message and appreciate the love more than words can express. We are surely loved.
Battley has had a few really good weeks! She is feeling pretty good! So much is going on that I am not sure where to start...lists work pretty well:
* she had a sleep study last night. Her daddy took her. I am not going to post a pic because they DREW on her FOREHEAD! It looked like "I" a cross and "I". I hope it washes off SOON! They didn't discuss the results with Adam so we will wait for a call from our ENT office. We pretty much know what the results will be though. It was for informational purposes only so we know how to proceed with some future decisions. Nothing drastic is about to happen though.
* therapy is going well. We have a Big Mack button we are working with. I will post an old video. My phone has been full for weeks so I don't have any new pics or videos.
* B started shaking her head NO last week. The first day (the day of my video) she just did it all day...then she didn't do it again for a few days. I kept asking questions and shaking my head YES and NO to help her learn the difference. FINALLY she shook NO in therapy when she didn't want any more prunes! She did it one other time in context since, so we are working hard on YES and NO! How awesome would it be if she could shake YES and NO!!!!
* Battley has a spot again at school in the Fall. We are going for an evaluation next week! The evaluation isn't to determine if she can go, but rather to make a plan for her goals there and find the best classroom for her.
* BEST AND MOST IMPORTANT NEWS OF ALL: Battley saw the cardiologist last week. The last time, other than once when she was sick and then we didn't even see a doc, we saw her was Nov 28, 2012 when we found out she wasn't in heart failure. Everything was looking the same! Hooray and Praise the Lord!
Everyone else is good. Hopefully I will get a minute soon for more...
Yep...Battley is 2! We chose not to have a party for her this year. Instead we got out and had our pic made by her B hay...the first pic of all 5 of us together. Of course I haven't gotten it off the camera yet though. Then we went to a friend's house for a last minute dinner get together and they threw her a party with balloons, cupcakes, and the cutest princess dress ever!
It's been so long since I've blogged that I forgot what has happened since last time. We are mostly through our new GI plan of getting OFF all reflux medicines. She is still getting one dose of Zantac at night. In a week we will stop the Zantac all together. Then her medicines will be:
1 half cap of Mirilax daily
1 dose of Little Tummies (over the counter senna liquid) daily
She is still doing her coconut oil. We had to stop for a few weeks when she was so sick, but she is back to having it each day. I see major improvements with her when she does have it. She is more alert and interactive.
Our new plan of action is to change to a more natural diet. It will still be a formula and pre-made for now. The doc is trying to get us a sample case in case it doesn't work. Our insurance situation is a NIGHTMARE right now, so we don't want to fill a whole month of prescription formula and then have to pay out of pocket for what we normally get if it doesn't work. Then if it does work well, we will transition to a blended diet. That would be me literally cooking and blending her food myself. A few things have to happen before this big step, but it is in the works.
She is still screaming in the night. We now know exactly what it is and are working hard to get the combo just right so she sleeps all night. Please pray for her and us...it's exhausting.
JM is doing very well.
H had himself a little miracle a few weeks ago. His ACL was a partial tear. When we went back for a check up with the surgeon after a month of PT, he released him!!! We were shocked! Still are! The doc believes that this can and will heal on its own. So for now he has a brace to wear when he wants to (he is wearing it for sports all the time right now), and he is back to doing everything he was before!
I posted a pic of Battley's new ride yesterday. So far we have just used it in the house. Tomorrow we are taking it to therapy to fine tune a few things with it. It's been great though!
About her torticolis: when she was so sick a few weeks ago, she was REALLY sick. She literally laid in our bed for days and didn't do anything at all...no playing, no rolling over, no smiling, no talking! When she started to feel better we noticed that her neck wasn't tilting as much to one side. It is not 100% corrected, but I truly believe that her laying so still and relaxed helped it! Crazy, huh?
Hmmm...I think that is about it for now.
We are working on her fingers with some new braces...she will wear these at night but we are still in the testing phase right now.
and we are also working with a new communication device. I will have to post a video later.
Kaity, did you see she wore her new dress for her bday?