30 April 2009

We are off to Virginia in a few hours for our weekend of ABM therapy. Please pray for a successful weekend with no illness and awesome therapy sessions. Our God is able!

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27 April 2009

Childhood Delight

One of the first times Liam ever laughed, one of those all out belly laughs, was when his Mimi was swinging with him on our swing set out back. I didn't hear it, but when I got a chance, I took Liam back out and started swinging with him too, in order to hear that angelic sound. Sure enough, he giggled and squealed as the motion of the swing took his tummy away.

Being vision impaired and loving movement are supposed to go hand in hand and Liam definitely likes to move. So, I knew this summer I wanted to get Liam his own swing. I went to Target and purchased the Little Tikes blue swing and eagerly set it up. I plopped Liam down in it and gave him a shove. And being the little peanut that he is, he was so small inside the swing and the swing had such a high , very straight, back that he fell forward in it and you could barely see him above the T-bar.

I was so disappointed.

Sometimes, it is easy to deal with Liam's disability and other times it can be so glaringly obvious that the world isn't geared towards his issues. I didn't think I would have to rig a swing just for him to sit in it and enjoy it. And clearly, with his head on his chest and nothing to see but a red T-bar, this wasn't going to be an enjoyable vestibular experience.

I started hunting down something that would work for him that wouldn't require a lot of intervention and rigging to make it usable and came across this swing at Amazon.

I ordered it, it came today and it is perfect! When I put Liam in it, he could sit up straight with out his head falling and with the slight recline position he doesn't droop forward when he is swinging! No rigging of this swing was necessary!! A normal, unadapted experience.

He started giggling right away which he didn't do in the other swing because he was so uncomfortable.

I was so happy for Liam to be able to enjoy such a simple childhood delight.

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26 April 2009

We haven't been back to Virginia for Liam's ABM therapy sessions since December. We did attempt a go at a full weekend of sessions in January but Liam came down with a wicked fever within hours of getting there and we only did one session before I decided I needed to get back home with him. I knew he wouldn't get much out of the session when he was so uncomfortable and in case he was really sick I wanted to be near our Dr.

Of all the times that Liam has been sick with a high fever (only 3) was when we were in Virginia (all 3 times).
So, you can imagine my trepidation as we embark this week on another trip to Virginia!

I have to go again (therapist's policy requires me to reschedule our canceled sessions or be billed for them) but I am a bit nervous about the trip. I
am looking forward to going though. I am curious how Liam will do with the trip, how he will do with the therapy and... I get to go shopping!

I know Liam has changed quite a bit since we were last there so it will be exciting to see if he responds and makes any new changes.
I am making sure the hotel is thoroughly sprayed down with Lysol when I get there and I plan on turning on the air to circulate the germs through a window for a bit before I actually allow Liam in.

Liam is such a good kid but when he gets to feeling bad he can be a bear!
He is so difficult and he resorts to horrible posturing. Liam actually isn't feeling well today so I am hoping he is getting it out of his system before we go! We tried to go to our BFG (bible fellowship group) get together today and we didn't even last an hour. He cried the entire time and wouldn't comply with anything I tried to get him to do.

It might have been the heat that was getting to him because when we got in the car and turned on the air he seemed to feel so much better. And I think Liam is getting tired of being carried for long periods of time. Granted, he didn't feel well yesterday either, but he made a huge fit in Wal-mart and he didn't care at all for his new Ergo carrier.
And since we were in the back yard of someone's house today and he was pitching a fit, my only options were to try to carry him and console him in my arms. And I think he has just had enough. He likes life better when he is stretched out on the floor.

Liam is really doing pretty good now with his side lying skills. He is much looser than when Carla first started ABM with Liam and even though Liam still isn't getting his head up and under control he is getting stronger with everything! So, I am looking forward to our trip and keeping my prayers going for a weekend in Virginia with no sickness! It would be the first time!

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22 April 2009

I have laid Liam in front of my lap top once before to see if he would like to "watch" a Baby Einstein video. This was a while ago and not only did he show zero interest in it, he couldn't keep his head up or body coordinated well enough to benefit from the experience. With the addition of his glasses and better head control I thought I would try it today.

I laid him on his tummy on his work out bench, inclined it a bit on a towel and laid the lap top in front of him. I turned on the video and Liam started laughing right away at the lamb puppets on the screen. I wondered if it was just the baaa sounds they were making that was making him giggle or if it was the picture or both. The screen then moved on to a baby and Liam continued to laugh. The most enjoyable moments for him though were clearly when the puppets came on the screen. Every time they were on, he would laugh.

It was such a happy moment for me for so many reasons.
  1. He could see the video and it was over a foot away.
  2. He could distinguish between which images he liked.
  3. He was lifting his head to see them.
  4. He was following the images on the screen.
Not only was his ability to see them from a distance tear provoking, it was the thought that he couldn't see much at all a few months ago that made it so special! He has really come a long way with his vision. And the fact that he was making a preference for which images he laughed at, was just so cool.

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The world becomes a much smaller place when you start blogging. You can become friends with strangers with one little comment. You get to know these people sometimes better than local friends as they pour their hearts our in their posts. Bloggers can share private thoughts and let you get a closer glimpse of their true hearts and lives. Their lives seem similar to yours and you can talk with the touch of a button. It makes this world seem so much closer.

I have followed the blog of a fellow NC mom and dad and their harrowing journey through the NICU with their daughter Kayleigh

Kayleigh needed one final big surgery to get her on the track to going home finally, but it looks like something horrible has happened and she might be "brain dead" following the surgery. She isn't waking up. They don't know what went wrong. Please visit their blog and say a few words of encouragement. When you are blogging your life, the littlest comments can be the most meaningful.

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20 April 2009

I've had several things to post about this last week and it seemed like the week got away from me before I could get anything written!

Liam had his 1 year well baby check up (a bit late since he is now 13 mo corrected) and we got another lovely weight gain so he is now a whopping 16 lbs 10 oz. I know what you're thinking... he is becoming such a chunky monkey, right? That's what I was thinking. But guess what? He isn't even ON the growth chart! Yup. He is so far below it looks like it will be a year before he even gets on it! And so as not to make me feel bad about the fact that Liam is a little lot underweight for his age, the Dr. said it would better for him to be underweight than overweight if he has to spend the rest of his life in a wheelchair. Ahem... WTH? Really?

I didn't say anything when he said that. I didn't really know what to say. But now that I have thought about it. I have a LOT to say about that...

Do you realize what you are saying? Do you realize how we have hopes and dreams and you can just deflate our hopes with one poorly thought out remark? Can you see the future? Do you have a direct line to God about what His plans are? And least of all, what difference does it make if an immobile person is overweight or underweight??? I think that would be the least of anyone's worries!

Ok- I feel better getting that off my chest! Thanks for being my sounding board.

Liam was on the chart for height, although he was only the 3rd percentile. But I really think they weren't using a preemie chart and I didn't even think to ask. Liam is still gaining and growing and that was all that concerned me at the time.

Liam also had his one year evaluation for the early intervention services he receives. It was nice and relaxed and I didn't feel it necessary for Liam to perform. I thought he did fairly well, considering his delays and I could answer many of her questions positively. He will still receive services for the next year, of course, and we are looking at maybe adding speech to his routine. Liam loved this red mirror they had and he would look at it and smile. He also tracked it very well. He tried to grab toys when she put them in front of him. I think his new glasses are really helping him focus better and see farther. Doesn't he look adorable?

Liam got a stander this past week. If I hear my PT right, we aren't using it for "standing" (I know, it is called a stander so you can work on standing) but we are going to use it for head control. He will get the benefit of standing in it and bearing weight on his legs in a proper position but it will hopefully give him the stability and response he needs from his body to lift up and work on his upper torso strength. He's vomited everytime I've put him in it, but thats because he bends over and squishes his belly while I am trying to strap him in. To make it fun for him, I tip him over backwards in it and he thinks it is quite funny. It keeps him laughing while he is in it. I don't know that we get to work on much head control when I do that.... He looks like he's posing here, huh?

My 13 yr old, Rylie, is pretty observant and noticed that Liam didn't look like his legs were the same length when he was in the stander. I just though it was because he prefers his right leg to stand on and he is now standing flat footed with that leg when he used to be on his tippy toes. I noticed it even more after she did and saw that when he stood flat on his right leg, his left foot didn't seem quite right. I mentioned it to the OT doing the eval. today and she said it did seem that his left leg was shorter. But, who knows if it is musculature or skeletal at this point. Just something else to add to Liam's laundry list.

And last but not least, we got into the Chapel Hill feeding clinic for May 18th. I don't know how God worked that one, because when I originally called they didn't have any openings until August! They told me to bring him hungry. It will be interesting to see what they have to say and if they will actually be of any help. We've coasted this far. I'd love to start cruising.

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13 April 2009


It's fun to have these pictures to compare from last year and this year. It's amazing how much difference a year makes. And even though Liam is not age appropriate for achievements you can still see how much he has grown and how many changes he has made in the last year! That outfit in his first Easter basket was a preemie outfit and it was too big!

This year I was hoping to be able to have Liam sit beside me and play in the grass while I worked in the soil. Although it hasn't worked out yet like I had planned, I have still been able to get outside with him and enjoy the many colors of spring. I planted new plants this past fall and have anxiously waited for the tulips and crocuses to burst through. They have come and gone for the year and the yard has burst into color with the arrival of April.

It all began in a garden with no buildings and no roads. No cars, no leaf blowers, no lawn mowers and no tv. No radio, no computer and no phones...just the gorgeous colors and smells and sounds of life. The beauty of God's creation was unmarred by sin and strife. It was beautiful. And God said it was good...

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09 April 2009

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.

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08 April 2009

Then and Now

Then and now in the Lazy Boy

Homecoming day on March 11, 2008 and now.

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07 April 2009

I had a marvelous weekend working outside in the yard planting, digging, weeding and planning. I love working with plants and our house here has a lot of beds that allow me to experiment and enjoy nature. My dad and I worked hard these past few days and we still have a lot of work to do. However, I wouldn't have broken my back and planted all of my new plants if I had paid attention to the weather forecast. We are supposed to have a frost tonight! My Dad and I headed out earlier to cover as many plants as I could, but honestly, there is no way I can cover all the new tender spring flowers so I am just going to hope the frost isn't hard and doesn't destroy all our work.

I had my annual meeting with my CDSA coordinator for Liam's therapy today. She's fun to talk to and spent a long time with us. She asked things like, "What do you want Liam to do this year?"

Really- the only thing I want is head control. Can you get me that please?

02 April 2009

So naughty-

Cathy brought Liam a neoprene girdle belt today. Liam is a very good little boy and doesn't hardly fuss much let alone get hurt and cry but he showed Cathy today that he does have feelings and they do get hurt sometimes. He cried his very sad puppy cry while he had on his new girdle belt. I think he felt too much like a girl trying to suck herself into pants that are too tight or maybe it was just the mark left on his chin after wards. Whatever the reason, he was very emotional over the whole experience and decided it was too much for today.

Cathy said to just leave the torture device here and she would work with him again next week because she liked what he was doing in it.

I'm so naughty that I decided to try him in it again and see how he would sit in his bumbo since Cathy didn't try that. Wasn't so bad the second time around...

Even when he fell over he was still laughing. Such a happy boy.