Dawson is doing well, continuing to learn and grow, develop and understand. He weighs in at about 17ish lbs and is 28inches long. He wears 12m clothes and size 3 diapers. He is still on step 2 baby foods, as he is not crazy about the texture of "people food" yet. He army crawls, has excellent hand skills (turns toys over, and over, and over) sits unassisted, stands, does downward dog (you think I'm kidding?) dances, and laughs and smilles. He is starting to talk and babble, although he doesn't say any actual words yet. He is doing great! He still gets PT once a week at Sparrow, and now gets both visual and physical therepy services through early on. He had tubes placed in his ears a few weeks ago and seems to be doing well. We had a check up with the ENT yesterday and the tubes are healing nicely, but Mr D. STILL cannot pass a hearing test. It is basically this test where they sit him in a room and talk through some speakers/ make noises through speakers. They want him to look in the direction the noise is coming from. He won't. Not even a little. He will make sounds back but the head is still. Which = fail. So we are headed to Sparrow in the next few weeks to be sedated so they can measure the brain waves in reaction to noise. However, we may be able to explain why...
We recently found out Dawson is "visually impaired".
At least thats what his Dr. Called him last week. I'm having some difficulty swallowing the reality. Visually impaired. Impaired.
But, he is not blind. Let me explain.
This my friends, is a very pooly drawn human eye.
That is what healthy, normal eyes look like.
This is what Dawson's right eye...DID look like.
Basically, what we thought was a membrane growing in the cornea ( I don't know if I have wrote about this before, I haven't really wanted to talk about it much.) They found that in the healing process, both his lens and iris had begun migrating into the cornea, which they call "shallowness" or "shallowing of the cornea".
Now, it looks like this.
(The dark red is blood, that will eventually dissolve) They went in and removed his lens along with some eye jelly (that resides in between the lens and the retina) and had hopes of being able to place a contact lens on the eye in the future. The contact lens would then hopefully be able to pick up the tasks that the lens would usually perform. You cannot tell that it is missing, he just is VERY sensitive to light, and without the lens, cannot see other than lights and colors. Also, this eye tends to migrate inward because it is not performing any basic function for now. This was done in early May. They had hope of us returning in 4 weeks to a healing right eye and a perfectly healthy left eye (as it had been all along)
Well now, the left eye looks like this...
The iris and lens have started moving and the cornea is becoming shallow. Oh goody. The retinal specialist had hopes of there being some divine intervention with the opthamologist to avoid surgery but today (over the phone) the optho. is hesitant. He feels that waiting could pose a threat to the cornea and since we already know the eye is capable on losing all of its depth, its to risky. I am really struggling coming to terms with this, because it would pretty much mean no chance at any un-assisted normal vision. I am still hanging on to the hope that one day there will be some magical surgery that he can have that will cure his poor eyeballs, and viola! No glasses. Intead, he is probably going to end up with a very thick set of specs. Repeat.after.me.Oh Joy.
We go see the optho tomorrow to get the official word, and game plan. In the meantime, I hope to see you all out here more frequently. Blogging is an outlet for me, one that I need. But sometimes, I hate talking about the bad stuff. But the good stuff seems so fake, unrealistic for me. Like we are waiting for that shoe. I hate it.
I am hoping to move this blog a little though, if you do not mind. I need to take this in 2 ways. I am going to A- Make it more about me. The mama. I myself am facing my own personal journey. One that I would like to document. I will be shy, embarrased, laying it alllll out there. I hope I do not lose readers because of it, but I need it for me in the present, and I want it for me in the future.
B- I am going to be using this as awareness. ROP Awareness. And I am starting by leaving you, with this. ROPARD.org.
4 comments:
Tons and tons of thoughts and prayers coming your way, honey.
I cannot begin to imagine what your family goes through on a day to day basis. But I will tell you this, you won't be losing me as a reader at.all. It's YOUR blog. That's the beauty of it. You can take it whichever direction you need to. Use it as therapy, use it as a platform for awareness or even just a place that you can document when and where things happen so one day you can look back and show Dawson how old he was when he came was released from the NICU or what the weather was like at his first birthday.
I'm so sorry you are going through all this. I can't even imagine. Sending you lots of hugs and prayers.
Looking forward to hearing more about you:)
I am always praying for Dawson - he is sooo sweet. Sending you lots of hugs!
We continue to pray for ALL of you Sara and don't ever forget that we love you guys so much and are here if you ever need ANYTHING!
XOXOXO
P.S. Your diagrams ROCK!
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