I have thought about writing this post for the last 6 days. But I just hadn't figured out the way I felt. Sometimes typing my feelings on this screen is not easy. I don't always have the words to express how I feel. You guys can't hear the concern, excitement or confusion of my words. You can't see my gestures and facial expressions as they change even as I am typing. Unless I am that good, which I am pretty positive I am not. As you read I hope you can understand where I am coming from or put yourself in my shoes.
t hasn’t been eaIsy making decisions for Gatlyn's future this summer. Jess and I just want the best life for him, as we do our girls.
So coming back to Michigan 3 weeks ago I had prescriptions ready to go and thought we were set. It turns out that no one would just take out of state prescriptions. I was feeling like a major failure that I didn't have all this worked out already. So I was calling a lot of people trying to get Gatlyn the therapies he needed. After seriously, no lie, probably 8 hours over the course of a week on the phone. A nurse finally called me back and I was told that the doctor was going to want Gatlyn to come in and do inpatient rehab for about 4 weeks.
The doctor he had been seeing at MFB for the last two years left(the doctor who recommended SDR for Gatlyn), his case had been transferred to a different doctor within the clinic. We had not seen that doctor yet and I had called many of times trying to get help with different things throughout the whole process of getting the surgery. So honestly I had a bad taste in my mouth with the clinic.
I totally was not expecting to be told that we would need to be inpatient. I thought I would call they would say okay we will fax that over and you can get started with such and such next week. Also the St. Louis doctor said that we weren't not going to need to do that. But I needed the scripts to go through and if that was the way we were going to have to, then of course I was willing to do it. With a really bad attitude I started planning for a 2-6 week stay for me and Gat. They wanted us to come in the next day(would have been a Thursday) but I refused and said we could come Monday. I refused mostly because I had to figure out what to do with the girls. And maybe a little bit out of spite. So it was a tentative admit date of Monday.
I was feeling really blindsided. I am finding out I am not really good with change. Especially when it is forced on you. But, once I have time to sit and think about it I handle it a little better.
So our story kinda goes like this, initially when told about SDR we thought inpatient was required and we were fine with it. Then when we went to St. Louis and the doctor said we didn’t need to do that. And also we didn't so many doctors obvs I was so excited. I thought I wasn't going to have to deal with the clinic anymore and all my problems were gone.
I just don't think the doctor in St. Louis deals with a ton of people like us. First, he obviously does not realize the hoops I was trying to jump through to get all of our therapies to even be considered. Because of insurance and such. Plus we do have an awesome rehab facility within our reach. Which is not the general case for any patient Dr. Park sees. His system is perfect for most. But most people who come from out of the country stay there for a month and rehab every day in their outpatient facility every day. I would have to drive 2 hours every day to make that happen for Gatlyn. That's a lot of gas and time for one. But two, insurance is a little weird about frequency and things when it comes to therapy. I would still go to St. Louis again but I think if I would have had the help I needed all of this mass confusion would not have happened. Maybe I am sharing too much and I understand there is a lot going on in this post. But I literally am struggling to put this into words. So my apologizes!!
To prepare for a four week stay at MFB I recruited some help and made like 15 freezer meals on Thursday. Did laundry and cleaned all weekend. When Monday came we were all packed and I was waiting for the call. Around 11:30 I got a call that insurance was requesting more documents so they still weren't sure when we were going to be coming. So we set up another tentative admit for the next day. The next day(Tuesday) I got the call around 9am that we were set to come in. We told them we would be there by noon. It was a little mad dash to get everything finished that I thought needed done. It's like when you're in labor and you can't leave the house because you have a list that HAS to be done before you have that baby. I am not alone in that right?
There has been a lot of information thrown at us in the last week regarding Gatlyn's future. Also some controversy in the way other doctors do things. When someone questions someone on where/who or why you did things, it will throw ya off a little bit. In short there are many different options and opinions on the best ways for many different things. We are in MI and have a doctor here who wants the same result for Gat but just a different way of getting there. And guess what folks, it's working and our boy is killing it per usual. Do we expect any less now!? We are surviving and Gat is working hard.
He is super happy here and that makes it easier on everyone. Today is probably the first day he even asked when he gets to go home and not come back. He has been doing 30 minute increments of therapy for a total of 3 hours a day. It is pretty amazing how he takes a challenge and really just powers through. He is determined and has a bit of an attitude. That attitude may be hard sometimes, but if that’s what got him this far, then I am sure as heck not stopping it;) We are actually looking at possibly coming home this weekend. For sure things can change and nothing is set in stone yet. So the 4 weeks is pretty much out the window. It just goes to show you that every kid is different. Being here though has also cemented in my head what a true miracle Gat is. I am so proud of the work God has done through him.
Even though Gatlyn will be getting to come home sooner than most it is yet another change. It's like our life gets thrown up in the air and tossed back down. And then just as soon as we are just about settled just rearranging a few more pieces of furniture and it all gets thrown up again. Super stressful. For some reason we seem to figure it all out eventually. It's another season that God has seen us through. So thankful for the amount of love and support we have received from our community and family. Our hearts have seriously never been fuller.