Rett Syndrome Awareness

This month marks six months since Lydia was diagnosed with Rett Syndrome, and honestly, it might as well have been six years. This has been the fastest six months and yet, I honestly can’t hardly remember life before. So much has changed that sometimes life feels foreign to me still.

I have been thinking about what I wanted to write in this post all month long. I have felt ALL of the emotions lately and in one word, I am tired. But first, let’s get into what has been going on with our little lady since our last update three months ago.

Rett Clinic

This was definitely a BIGGIE! I did a whole separate post about our visit to the Children’s Hospital in Denver so that we could meet with some of the best doctors for Rett Syndrome. We were so grateful for the opportunity and guidance. It was nice to be with exceptional doctors and to just breathe. We learned a lot and just received our FULL report this week. It was nineteen pages long. So, a lot to process and put into action but we are so grateful to have this resource.

The plan is to make this a yearly visit – so we will be back next fall!

G-Tube

The biggest change the last three months is Lydia’s G-tube. Again, I did a separate post detailing all of that experience, but the surgery went perfect. Lydia has healed well, we had a little granulation tissue happening, but everything is looking really good now and our surgeon said he would have been surprised if we didn’t have any, so all is well!

I have been surprised with how comfortable I have gotten with it so fast. Everyone said that that would be the case, but I was a little skeptical! I am grateful for that.

And the G-tube has already proven it’s worth. About two weeks after Lydia’s surgery, she got a really bad viral infection. Fever, throwing up, all of the rough stuff. Normally, this kind of thing really messes with Lydia. And it was still really hard, and something we have to take very seriously because things can escalate really quickly for her, but the G-tube was SO helpful in giving her medications and keeping her hydrated (eating and drinking are really hard for her at the best of times, but when she is sick it is especially difficult). So it was such a relief to give her things through her tube.

ALL the Therapies!

Oh my goodness, therapy, therapy, therapy! Lydia is in ALL the therapies – physical, speech, feeding, occupational, and visual. It’s a lot! I am feeling really grateful for our local providers. They have been so good with Lydia and they feel like family now.

The last month we have added occupational and visual therapy into the mix. We haven’t actually started them yet, but Lydia has been assessed and approved that she needs it, and so services will begin in November. It’s definitely a process.

Sleep

Lydia’s number one issue right now is sleep. Lydia does not sleep. We started melatonin, but it just helps her fall asleep initially, it doesn’t keep her asleep. So most nights, she falls asleep around 8, but then every 45 minutes to 2 hours, she is up. Sometimes we can get her back to sleep in 15 minutes, other times it can be 2 hours. Repeat that process over and over and over and over again every single night. So Mark and I don’t remember what it feels like to get uninterrupted sleep beyond two hours.

We are exhausted. I don’t even like writing that because it doesn’t really feel like it adequately describes what we feel. I think the hardest part is there is no end in sight. Lydia has never slept well and we have never experienced her sleeping through the night. But the last year (and especially the last six months) have been absolutely brutal. From what I understand from our support group, we can expect this until about age 5. Rett typically has a “rapid regression” period from ages 2 -5, which is when sleep is the most difficult. Lydia is only 2. We just don’t know how we can continue. We feel like we are in a constant fog and, honestly, it’s just about survival. Every morning I pray to just give me the strength to make it through another day. It’s exhausting.

We actually just met with Lydia’s developmental pediatrician yesterday, and she wants Lydia to have a sleep study. Lydia’s breath holding has become more frequent and she is concerned that there might be breathing issues at night which could be causing her sleep disturbances, and/or seizures. We are hoping they can get us in soon so that all of us can get some rest.

Reflux

Lydia’s reflux is still a daily presence. She is on a medication that helps but, unfortunately, our pediatrician thinks it may just be something that will always be present in Lydia’s life. That is hard to accept and we are going to try some things to hopefully help. So send all the good feelings our way!

Cortical Vision Impairment (CVI)

A new diagnosis we got while at the Rett Clinic in September was for cortical vision impairment. Our speech therapist that Lydia works with in Salt Lake actually knew a lot about this and gave us some really helpful tips. We still have a lot to learn, and we are getting some conflicting messages about what that to do about it, but it’s one of those things I am hoping with iron itself out as we move forward.

Rett Syndrome Awareness

As I said at the beginning, I feel like the last several months, I have felt every feeling out there. I normally feel like I am a pretty even keel personality, but there have been so many emotions lately.

For one thing, I’ve learned that I am really tired of being told what to do. I realize that statement sounds very immature but it’s kind of where I am at. The last year I have scheduled and gone to appointment after appointment with this and that specialist and follow ups and therapies and assessments and I’ve just kind of done it in a zombie state. I just did what I was told because they must know best. And I am not at all about to go on a medical bashing spree but it just hit me a couple weeks ago that we need to start making decisions and taking some control back.

Lydia is more than Rett Syndrome. Maybe this is an unpopular opinion with our medical team, but Lydia deserves more in life then just to be taken from one therapy or doctor appointment to the next. Those things are really important for her, and I promise we aren’t going to stop, but I think there needs to be some balance.

Plus, our other children have definitely been feeling it. They truly are little angels themselves and have been so patient (and continue to be so). But they have needs too! I wish I knew what the perfect formula was but I am figuring out that it’s okay to take medical advice and then tweak it to fit our family.

I have moments where I do feel grief. I say moments, though, and I mean it. Partly because I just don’t have time to fall apart. I can’t just lay in bed and feel sorry about things. And partly because Lydia’s light shines so bright, that she makes that darkness go away.

But I do mourn the things she will not be able to experience. Her life is not what I dreamt for her. Our family life moving forward, is not what I dreamed it would be. Mark and I’s life, is not what I thought it would be. I don’t let myself go long distance thinking hardly ever now, but sometimes I have moments when I allow myself. But it’s only a moment.

Having a child with severe challenges has made me feel even more isolated than I ever have before. Homeschooling I feel like has already made us different than the “norm” but this just takes it to a whole new level. When I hear people talk about their life and their day-to-day happenings, I find myself quietly listening because it feels so foreign to me. My life feels so different than everyone else and that can feel lonely.

I realize that is a whole lot of negative and heavy-talk, but this wouldn’t be a very honest recap of the last couple months if I didn’t include it.

There is a whole lot of good, too. It has become an unspoken family rule that when Lydia giggles, the world STOPS. It really does. It doesn’t matter if you are in the middle of a sentence, we all stop, I usually get happy tears, and we just soak it in for however long those giggles last. I love them and they are easily my favorite sound in the world.

Lydia has started to give “loves” and I cannot love them enough. Lydia has never reached out to us or shown any affection in that way. But a couple months ago, she started leaning in and giving Mark a “love” and to say I was jealous is a BIG understatement! But this week, she gave me my first “love” and my heart melted into a giant pile of goo. It is a big open mouth to your cheek, usually a lick is involved, and it is the sweetest.

The last several months have also seen some really tender conversations with Jacob, Sarah, and Benjamin. This effects their lives so much as well. And they are so sweet with her. Sarah is amazing at how genuinely helpful she is, Benjamin is the sweetest with her, and Jacob is kind and strives to help in his way. We had the missionaries over the other night, and they were talking about the Plan of Salvation and Sarah said, “We already know where Lydia is going – the celestial kingdom.” And we do. There is something truly humbling, that I don’t think we will ever get over, how special it is to have Lydia in our family. She makes us all better. She lights up all of our lives.

October is Rett Syndrome Awareness month. This is a first for us but we want to show our love and support to all those out there that have this as their reality with us. Lydia is the definition of goodness and we love her so very much. Thank you to everyone that loves her with us.