Sunday, May 4, 2014

Where has the time gone?

I have thought so many times about updating Nick's seems like so much was going on with his cancer treatment, then I started nursing school, which is a never-ending study session! So many things go on in our lives, we are always so busy, I feel like I never have enough time to do anything, especially blogging and of course, cleaning!

But enough of that...Nick is doing relatively well! Where to start?

Well, he continues to have scans, or ultrasounds and X-rays every 3 months to check for the cancer coming back and so far, praise The Lord, they have all been clear! We also go back to St. Jude yearly, for check-ups with their team.

Nicky is in pre-school and goes twice a week to the Lee Ann Britain Infant Development center. He just loves it! His class is small but consists of other kids with special needs and peer models as well. He also goes to speech therapy, aquatic therapy and music therapy there also. Then we have our local school district that comes out twice a week and offers community based therapy in our home. So Nick gets to work with many people!

Nicky has been struggling with 'spit up' or 'reflux' issues. I don't want to say throw up, because usually it's not enough for it to even come out of his mouth but many times it does. So essentially, he is refluxing food constantly. He is still fed strictly by g-tube and he does not have a fundoplication. He GI doctor will not recommend getting a fundo done, and after he explained how it actually works to me, I am in complete agreement with him. It would do more harm than good at this point. Nicky is on reflux medication, Prevacid, so it doesn't usually burn his esophagus/throat. Lately, though, it seems to be getting worse where you can tell that it burns when it comes up his throat by the look on his face. We did an upper GI series at KU and saw exactly what we expected to see, reflux into his esophagus. So at this point, his doctor recommends getting a GJ tube.

He needs it. Something has to change.

He can barely do anything without refluxing most of his food out. We've even decreased his feeds to over two hours per feed but it doesn't seem to help at all.

So, we're waiting on the lab to get the right supplies in. It seems to be taking forever though! I just want the procedure done so he can try to get back to doing things and not having to worry if he is going to choke when he spits up!

We also went to the eye doctor on Wednesday. We did not get good news. Nothing I didn't know, but she solidified it for me. And I really wasn't ready for what she said.

Nick's eye pressures continue to decline.

We decided after the horrific issues we had with the first retinal repair surgery Nicky endured that we didn't want him to have any more. Surgery actually made things much worse for him. Both of his retinas are detached and since they are not getting the blood supply they need to survive in his eyes they will begin to harden and that will cause his eye to basically collapse into itself.

I really don't know why, but it hit me like a ton of bricks. I never cry in front of people and I almost cried in front of the doctor when she told me. I've known this is probably going to be what will happen but truly I just hoped that it wouldn't.

Nick can only see light at this point. That all he has and now that is being taken away.

Why? Why, does this have to happen to this innocent boy that has been through so much. It's all he has. It's the main way we use to help him learn right now. Nicky loves lights. Any light, he just loves it and is so attracted to anything that is lighted.

I am mad right now. I shouldn't be. It's not my nature to be mad, I'm usually very laid back. But I just don't know how to deal with this right now. I can't handle it. I need to be strong for Nick but I don't know how. I don't know what to do for him. I don't know how I'm going to be able to help him learn and how he's going to be able to play anymore.

He still can't sit up, crawl, walk, or handle things they way you and I do. He has severe tone issues and is unable to control his muscles very well. He can't just feel around and figure objects out, he can't just pick something up and manipulate it.

I don't know when he will completely loose his sight. It could be tomorrow, it could be a year from now. But when I look into his eyes I can see them changing. I can see his cornea's starting to become dull, with an opaqueness to them. It is subtle but they're definitely changing.

I feel like I am loosing him somehow....

Please pray for us. For Nicky, that somehow God will let Nick retain the little vision he has, that little bit of light in his dark world.

(Nick's 2013 Christmas picture)

1 comment:

  1. Oh Laura, I cannot stop crying to hardly write this. I am so heartbroken...little Nicky has endured so much. Please know we will pray he will somehow be able to still detect light, and that it will baffle docs but be clear to you that he can still see it!! If that doesn't happen (and even if it does) I also pray that the Light of the World will be so real to Him and all of you that He will be clearly seen to give you direction on how to help him learn. I know it seems impossible but I know He is able. Loss of light or total sight is so near to our hearts too...bright lights are also one of the main ways Mason "plays" and I have the same fears. Also praying for the change to the GJ tube to be an incredible relief and help to him, and complication-free. Huge hugs and prayers, and give some to Nicky for us too!!