Yesterday we visited the rehab clinic at Children's and met a new team that will be following Jillian. It was a little hit to the heart walking through the doors labeled "Special Needs Clinic." I was not well mentally prepared for this clinic because honestly I was not sure what their part in Jillian's team really was, and honestly I am rather use to at this point going to doctors and hearing them say that they are not sure what is going on. They were really nice and we talked about Jillian's history and what she can/can not do. They watched Jillian walk and they did an exam of her muscles.
They told me that Jillian will most likely need a wheel chair for distances as she gets older and grows out of her stroller. That for now since she is ok sitting in her stroller that we can stick to that but at some point to give her independence when we are out that a wheel chair is going to be a better choice.
They told us that it is smart to conserve her energy, to let her walk and move around some but to be smart about it because her energy use impacts all other areas of her body, which we see with her O2 levels. We see that also when we do things out and about. We took her to a museum and she walked around off and on for about 2 hours. For the next 3 days she laid on the couch because her muscles had expended all of her energy and it took her so long to bounce back. It is not good for the rest of her body when that happens. For her it is not about if she can walk, it is about how much energy it take out of her to walk and if she is spending that energy on walking that the rest of her body is not getting that energy and she does not have much extra to spare. This is a kid who is just fine for sitting for hours at a time.
I brought up about therapy and state cutting coverage. They said to keep doing therapy but that we are probably not going to see her advance much past she is now and that to be careful not to push her too hard in therapy.
We also talked about how she turns 3 in December and we could face a fight with insurance to continue to pay for private therapy because they will want her to get school based therapy services. As a licensed early childhood teacher, I don't think sending her to school in December is the best choice for her. I quit my job and pulled her out of daycare to keep her home to try to keep her lungs healthy why in the world would I send her to school in the middle of winter during cold and flu season? Also, academically she is ahead. I know I am a mom and think the world of my kid, but other professionals agree that her logic and reasoning skills are high. To help us prove that she is not a good candidate for school at 3yr old, we are going to have her cognitive skills tested at Children's to show that her delays are physical and not cognitive. I am going to call on Monday and schedule that. The rehab clinic also said they would help us more with this as needed as the time gets closer.
She also brought up the Go Baby Go cars that have been on the news a lot lately. She said we could look into one of those for while we are out if we thought it is something that would help Jillian. I have heard of them but not looked into them, so I need to do that.
As much as that is a lot, it was actually a good conversation and they were super kind which makes hearing all of that easier. I am glad we are finally having this conversation because everyone has dance around it and we needed to have this conversation so we can figure things out past today and plan a little better for the future. This is something Brent and I have talked about before so it was not a total shock to us, it is just the first time a medical professional sat down and called it straight with us about Jillian's muscle issues and what the long term looks like. I would rather them call it straight then dance around it, we need to plan for the future and we need to plan what is best for Jillian and that takes open and honest conversations.
But even with me having an idea that she most likely would need a wheel chair for distances it was still hard to hear it come out of a medical professional's mouth. Its not like we had a diagnosis when Jillian was born and they sat us down and told us all of the things to expect... she is 2 1/2 without a diagnosis. This means we hit different things without necessarily having a guess they were coming or even when we do have an idea of what might be coming, it still makes it hard when it happens. But, we will do what is best for Jillian, that is always the goal. If having a wheel chair to help her with distances and not expending all of her energy then that is what we will do.
We also went and spent some time with my cousin Annie and her little guy Eli while we were at Children's. Eli had been in all week for some testing so we stopped to say hi and catch up. I really value my friendship with Annie because we are both going though a lot of the same things with our kiddos so we are able to relate about crazy medical stuff. We are able to vent and understand where the other person is coming from because we are both going though it. I don't wish any of these challenges on either of our kiddos, but I am thankful that since they are that Annie and I have each other.
I think this weekend is going to be low key for us. Brent just finished the new Team Jilli logo to include her oxygen and I have been working on sewing on his patches to his new adult uniform for Boy Scouts (his old one got a stain that would not leave)
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