Back to school

It's so hard to get back into the rhythm of blogging lately. So many things to say yet I can't seem to start a single thought anymore. So I just don't.

I guess I'll start simple today.

Liam is back in 'school'. We have a new speech teacher this year. I am always nervous about bringing in new staff. You never know if they are going to be a good fit and Liam is so complicated that it takes not only someone who is confident in their abilities but someone who is humble in spirit because Liam will get the best of you.

 We have the same itinerant preschool teacher and she has been wonderful. We've been really blessed to have her because she is energetic, forward thinking and positive. Liam just grins when I tell him she's coming.

Liam currently gets 3 hours of PT a week, 2 hours of OT, 1 1/2 hours of speech, and 2 hours of preschool with oversight of our vision teacher once a month. Those are either in our home or at our private clinic.

I'm thankful Liam loves to learn and really enjoys having therapy, for the most part, because we only have one day a week where we aren't seeing someone.

Top news of the week

*My easy going, placid child, has been replaced by one that realizes the significance of whining. As in, 'If I whine long enough and loud enough someone will come."  Even when we are right there. What he wants I have no idea since he can't tell me. But he is now whining to get some sort of attention from us. That's a good thing, right? RIGHT?!

*We had a GI check up this week. Liam gained about 3 grams a day since our last appnt which is okay. We wanted 5 grams a day. But there's no telling how much he had really gained since he lost so much with that stomach virus. It was a good appointment in that the NP said she thought Liam was doing fine on the four cans a day (even though he vomits once a day still) and that since he is gaining and doing well there's no need to push it to five. Whew! And she echoed what I felt about the fundoplication (wrapping the stomach when you have severe reflux and/or aspiration issues) in that Liam should not have that done since he is so sensitive and throws up so easy. It was nice to hear that because I have wondered if we made a mistake in not getting it when we got the g-tube placed last year.

*We got to see Liam's vision teacher this past week (we only see her once a month) where he impressed her with his knowledge of the Interactive Alphabet on the iPad. She loved seeing him work it and follow my directions. Our vision teacher has been great because she's the one constant in Liam's life who has been with him from the beginning. She has seen Liam take off intellectually and is constantly thinking of how to move Liam forward.

*We only need to raise $5500 more for Liam's treatment fund! We are still taking donations, selling tees, and praying that we will have the money by the end of June! Know anyone willing to help? Please send them our way! I can tell them how much it sucks to not have insurance cover the procedures, intensive therapies and alternative treatments needed to try to lesson your child's disabilities.
      And a big thank you again to everyone who has donated! I think I've personally thanked everyone but if I haven't, it isn't your fault. Some days I just don't have it all together!

Spinal taps

I recently started taking Liam to the chiropractor. This Dr had been recommended to us numerous times over the past two years but I've never felt the need to take him. But, now that Liam has medicaid, our out of pocket expense is more affordable so I thought we'd give it a try.

The first couple of times Liam did great, but he eventually started crying when Dr. Spine was working on him. He said he was going to be a little sore and that was to be expected.He does these little taps in a few places with some device that he uses over his hand so it doesn't directly touch Liam.

Liam goes twice a week and we are only there for 15 minutes at a time.

Yesterday, we sat in the lobby for a bit and when we got called back to the room, I sat down in our usual chair with Liam.

No joke: Liam looked all around and burst into tears.

It was one of the saddest, most beautiful things ever.

He can see again

Liam absolutely LOVES his new glasses. He smiles every time I put them on. Because he can see now. And he KNOWS he sees better with them on.

We didn't magnify this pair as much as the others (this pair is a -6 while the previous is a -12) and Liam can definitely tell the difference. He much prefers this pair over the last because he will leave this pair on. He didn't care about his last pair and wouldn't want to wear them, ever. I also decided to get a solid constructed pair out of plastic instead of the cute wire rimmed ones we had before. Liam was always ripping off the nose piece and we had to have that replaced several times. This pair is all one piece and has cute little duckies on the sides. The lenses are also larger which I liked because it allows for Liam's preference to looking down.

 You can't see it too well in this photo but the 'scratch resistant lenses' that we have a one year warranty on, are evidently not tooth resistant. Liam was chewing on them the first week we got them and put two large scratches in the left lens already. *While taking this side shots, Liam wouldn't quit grabbing the lens cover to the camera. Which to me tells you a lot, because 5 months ago, he wouldn't have reached out to grab at anything.   

Distinction

There is an organization in NC for children with impaired vision called the Governor Morehead Preschool. This provides us a vision teacher who comes to our home twice a month (used to be every week but Liam 's vision is so much better now) and helps to give ideas on what things to do to help Liam. They also have an OT at the state level who will come visit only if requested by our vision teacher. We had Ms. Sue come last week to talk to us about Liam's eating. It was largely at her prompting that we chose to go the route of the g-tube so I was happy to visit with her and bounce ideas around.

She reiterated what I knew, which was that we need to make eating fun for Liam. But she went a bit farther than I was thinking and said that we should let him taste whatever we are eating. Be it barbecue sauce, pickle juice, or salsa, we should let him see it, touch it and then taste it.

My concern was that so much exposure to so many flavors would not be wise, but she said that he is the age now that little ones would be eating what we make, exploring lots of new tastes and because meals are a family affair, we should include him in them all.

Our foray into flavors this week consisted of oranges, maple syrup, spaghetti sauce, gravy, and more.

I'm not sure he is loving all the new flavors but at least he is always willing to give things a try.

Things I love

I love...

that Liam can sit in his high chair and watch my dad on the other side of the room and laugh as he waves at him.

that Liam can be on the outside of the trampoline and giggle with joy when he sees the kids jumping on it.

that Liam can anticipate me pouncing on his last little toe in "This Little Piggy" and squeal before I get there.

that Liam thinks it is the MOST hilarious thing to have his sister jump up in front of him while he is sitting in his car seat atop a shopping cart shouting L I A M !!!

that Liam grins when I ask him, "what does a kitty say...cow say... etc.

that Liam loves to play peek-a-boo with me.

that Liam smiles on his favorite pages of his books.

that Liam loves to play patty cake and anticipates the clapping.

that Liam loves kisses.

that when I bend over him in his crib, he smiles at me.

I could go on, but I bet you get the idea.

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A few of those things that I love about Liam couldn't have happened a few months ago. Liam wouldn't have been able to see it.

Last week, my dad (who lives with us) was waving his newspaper at Liam who was across the room in his high chair. I was shocked when Liam started laughing at it. I could not believe that he saw it from that far away. It was such an exciting moment. I am not sure what he saw- but the fact that he saw it was fantastic! He laughed and laughed every time my dad flew that paper in the air.

It is such a gift to be able to lean down over Liam's crib and smile at him and have him smile back at me. He still doesn't make eye contact, but he now sees my face. Which is something I didn't know would ever happen. It's a gift I will never take for granted!

I love it!

Liam's right eye has been turning in since last October. His ophthalmologist said she thought it was a good thing because he was probably trying to focus and understand what he is seeing since he has "cortical visual impairment". There had been a discussion on the preemie group I am a part of about patching lazy eyes and it got me to thinking about Liam and whether he should be patched for his eye. We don't have an appointment at Duke with the ophthalmologist until June and I didn't want to wait that long so I made an appointment with a local optometrist.

I am SO thankful I made that appointment. At our last eye exam I was told that Liam was only slightly near sighted (-2). Dr. Doty told me today that Liam is VERY near sighted (-12) and that he can't see anything clearly beyond his nose! Poor baby! No wonder he lost interest in his books. He can't see them clearly!

She explained what Liam's eyes are doing. He actually turns both in (which I didn't even know) and she explained that he is only focusing one eye at a time. By only focusing one eye at a time he is over focusing and losing the focus of the opposite eye. He has the diagnosis of Esotropia and not the amblyopia which is what I was afraid he had.

You can see in these pictures not only his dilated eyes from the exam but how his left eye is turned in.




These two photos show his right eye going in.


Liam did very well for the eye exam. Dr. Doty took approximately two seconds to say he was very near sighted. I couldn't believe how quick it was. The dilation part went great. She said he was the first patient of the day who didn't cry when the drops went in (such an easy goin' boy). But, hoooo boy, did he throw a fit when she tried to see in once they were dilated! He sure showed her how mad he was though...by throwing up his peas.

We fit Liam for his glasses today. Everyone oohed and aahed over him and said he looked so cute in them. They put a rush on them so hopefully we will have them within the next week.
I am not sad to see Liam get them. I am thrilled that we can still correct his issues with vision and that he now will have a chance to see beyond his nose. 90% of what a child learns in their first year of life comes from vision and if we can increase his percentage by the slightest bit we have given him an advantage. Besides, glasses are just the window dressings.

And if that wasn't exciting enough today, my Dad's dog was attacked by a neighbors dog and we had to take him to the vet. He had a good size tear in his side. The muscle got pulled away. He's in a lot of pain. They will be putting a drain in tomorrow and he is on pain meds and antibiotics. He can't walk well due to the muscles and my dad's room is upstairs and picking him up isn't an option. He just hides in the corner down here. The poor guy won't even move right now at all.