Three Month Lydia Update: It has now been three months since Lydia’s diagnosis and it feels so much longer. If I were to give one word to update on where we are at three months in, it would be OVERWHELM.
I am so overwhelmed ALL. THE. TIME.
Calm Before the Storm
The first two months after Lydia’s diagnosis was just weird in ways. We had just received this major diagnosis, we had met with Lydia’s developmental pediatrician (more on that in this post) and then…NOTHING. Nothing was happening. Nothing had changed. And it was strange. We knew things should be happening but we had no idea what we should be doing or how to get things going.
Shriners Hospital
Finally, about a month ago, we met with a provider at Shriners Hospital in Salt Lake City and things have been CRAZY ever since. They did x-rays of her hips and her spine. These are going to become routine for Lydia every six to twelve months. Hip dysplasia (especially since she isn’t weight bearing) and scoliosis are big possibilities for Rett kiddos.
Lydia’s right hip is beginning to show signs of dysplasia. This is particularly concerning because she had an x-ray done of her hips in December and all had been normal then – so this is something that has happened just over the last six months. It is still mild right now, but it is something we are definitely going to have to watch.
Lydia’s spine is looking really good right now though and so that is a BIG relief. Scoliosis is definitely something we want to prolong as LONG as possible!
We also got Lydia casted for AFOs (ankle foot orthosis – I am REALLY trying to learn all the lingo guys, and I am getting there – YAY!). These are braces that go from her foot, ankle, up her calf, to just below her knee. These will help give her added support, specifically in her stander. So far she is handling them pretty well – and they turned out SO cute – purple butterflies! Her first piece of customized equipment!
We left this appointment with referrals for ALL the therapies as well.
Occupational Therapy
Occupational therapy is a therapy Lydia has REALLY needed for a long time, but an option that is not available with our local child development center. We were finally able to be seen at Shriners and it went SO WELL. I really liked the therapist we are working with. She has worked with several girls with Rett Syndrome but Lydia would be her youngest. She was actually really excited to work with Lydia being so young because she is at that perfect age where a lot of progress could be possible.
Our appointment really took me back to all of the child development classes I took back in high school and college. We talked a lot about how right now is PRIME TIME for Lydia’s development. Her brain is making all sorts of connections and so she could possibly make more strides in the next year, compared to what may take several years down the road. For that reason, Lydia’s therapist wants to be really aggressive. She really wanted to see Lydia once a week.
This is when my brain just dives into a spiral. I so want to do what is best for Lydia and give her all of the opportunities to grow but the reality of it is so hard. This is a six hour drive roundtrip and that isn’t counting stops for diaper changes, eating, and other needs. These are LONG days. And it’s not just Lydia and me. It is a lot to ask of the other kiddos. They are so incredible. They have been so amazing with everything but to commit to doing this once a week just feels like a lot.
I agreed to come down every other week (which still feels like a lot for me) and we will just try and do the best we can. Right now, I am just praying that the Lord maximizes our time and He fills those gaps that may come.
The main goal of occupational therapy is to help Lydia become more independent. Goal number one is to try and help Lydia get more independent with her toys. One of the main features of Rett Syndrome is non-purposeful hands. Lydia does a lot of hand wringing and she just can’t move her hands in purposeful ways. This makes playing with toys difficult, almost impossible independently. So we are going to try and work with her hands as best we can and find ways to motivate her.
Physical Therapy
The next week we went down to Shriners again for physical therapy. Our therapist was really happy with Lydia’s ability to sit independently. He gave us some stretches we can do with her to help stretch her hips to help with the hip dysplasia. He was happy that we were using a stander but he wanted to get more out of her legs. We have really liked the stander – and there are some definite benefits – but it is pretty passive as far as work goes for Lydia.
He suggested a gait trainer. We put Lydia in one and she LOVED it! She did so well with it. He was able to find one that would work for Lydia and she is going to get fitted for it on our next visit! This will just be on loan to us until we can prove that Lydia can use it properly, and then (hopefully) we can get one of our own.
As with occupational therapy, they want to be aggressive and see Lydia as frequently as we can. So we are going to do every other week (and try and get it at the same time as occupational therapy).
Speech Therapy
Our final therapy was with speech. This was, again, at Shriners. I was so impressed with our therapist. She is personally invested with Rett Syndrome (a very good friend of hers had a daughter with Rett) and she was able to give such great insight. One thing that has driven me crazy the last year is when doctors hold back. I understand why they do, but sometimes I just want to say, “WHAT DO YOU REALLY THINK?”. I feel like so often they just tell me a sugar-coated answer and I just want honesty. Of course, you would like this honesty to be given in a loving and kind way, but honest none-the-less. This therapist answered a specific question that Mark and I had had since the beginning of this diagnosis and I really appreciated her response.
She also gave us such a SOLID plan moving forward with regards to speech. Where Lydia has never spoken, we have never had any regression (which is characteristic of Rett). It is difficult to know where to begin. Lydia also doesn’t show any recognition that she knows any words. She doesn’t turn towards individuals or objects when you say their name. Sign language is not an option that works for most Rett kiddos because of their hands. So it all comes down to their eyes. Lydia is currently having some eyesight issues (she has an appointment in September) and so we were worried that eye gaze was even going to be an issue. But her therapist did some activities with her and was so impressed (and so was I!). Lydia did so well and we came up with some great ideas moving forward.
We are planning on meeting with her once a month.
GI
The only appointment we have had with the children’s hospital was with Lydia’s GI doctor. Lydia’s GI issues are just hard. Eating is essential – obviously, and it is such a struggle. Despite our efforts, Lydia has dropped in weight again and is just not growing.
We came into this appointment with three major concerns. First, weight gain. We just don’t know what else we can do to help. We can’t add MORE because Lydia will throw it up. So we have tried to make it calorie dense with varying results. We are really concerned about her hydration as well. Lydia will not drink water or juice – only milk and PediaSure. So I think she is just in a constant state of dehydration. It’s been especially hard this summer. Another part of Rett is that you struggle with regulating body temperature and Lydia just cannot handle the heat. Even in the shade she gets drained really quickly.
Second concern was constipation. This has always been a struggle for Lydia but it has been managed well with Miralax but it has recently become not as effective.
And lastly, Lydia’s throwing up. In June, our developmental pediatrician prescribed Lydia an acid blocker to help and I would say it has. She has less spit up but her throwing up episodes comes in cycles and we are due for one this next month – so we will see. This is not a normal Rett characteristic and so we are a little unsure what to do or what is happening.
We came up with a plan. The biggest part of the plan is that Lydia is scheduled to get a G-tube. I was so resistant of this at first. But I feel like we pretty quickly have realized the value of it. This will really help make sure Lydia is getting the nutrition and hydration that she needs. It will also help with medication. We feel good about the decision, although I am sure tears will be present when it happens. This is just hard.
Tired
So how are we doing? We are tired. There is just no other way to say it. I am overwhelmed with all of Lydia’s needs and how to get them where we live in a way that is manageable. We have put thousands of miles in our car over the last year going to doctor appointments and therapies and we are just tired. It’s been a big strain on all of us and it is just not sustainable. There is so much.
As time goes on, reality also sets in more and more. When you start to think about all of the changes for Lydia, for our family, for us as a couple, it is so much. Honestly, we just don’t let ourselves go there. One thing we have learned so quickly is that Rett Syndrome has such a spectrum of severity. So one path is so different from another. So much is still unknown. So just taking things in small doses is just essential.
We continuously pray that we can be all that Lydia needs us to be. I can’t remember if I have written it before, but several months ago, one of the kids told me that they think Heavenly Father has a picture of Lydia on His nightstand. I’ve loved that thought and I think of it often. He is so aware of her. He loves her. She has a special purpose here on earth. And I am humbled every day to be her mother. So are we tired…oh yes. Do I feel like we are just surviving instead of thriving most of the time…sadly, yes. But we keep going. And I truly do believe one day we are going to feel like we can breathe again. We aren’t quite there yet but we will get there. And in the mean time, we just look at this angel face and we know that we are going to be okay.
