28 June 2009

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.

--------

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!



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26 June 2009

In the dark and all alone.

Cherokee Tradition - Author Unknown

Do you know the legend of the Cherokee Indian youth's rite of Passage?

His father takes him into the forest, blindfolds him and leaves him alone.

He is required to sit on a stump the whole night and not remove the blindfold until the rays of the morning sun shine through it. He cannot cry out for help to anyone. Once he survives the
night, he is a MAN.

He cannot tell the other boys of this experience, because each lad must come into manhood on his own.

The boy is
naturally terrified... He can hear all kinds of noises. Wild beasts must surely be all around him. Maybe even some human might do him harm. The wind blew the grass and earth, and shook his stump, but he sat stoically, never removing the blindfold. It would be the only way he could become a man! Finally, after a horrific night the sun appeared and he removed his blindfold.

It was then that he discovered his
father sitting on the stump next to him. He had been at watch the entire night, protecting his son from harm.




We,
too, are never alone. Even when we don't know it, God is watching over us, sitting on the stump beside us. When trouble comes, all we have to do is reach out to Him.

Moral of the story:
Just because you can't see God, doesn't mean He is not there.


I have felt just like this Cherokee boy.

I've been all alone, in the dark, not able to see what lays just beyond my reach.

I have sat, scared (terrified) of what is about to happen to me. I have cried tears of pain at being left alone to defend myself against my fears. I have wanted to be rescued.

But, I wasn't really alone. I have never been alone. Even in my darkest hours, God was there. Did I feel his presence? No. But that doesn't mean he wasn't there with me. Just like this Cherokee boy who couldn't see, we can't see everything either, even though our eyes are open.





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23 June 2009

OT

We had to hire a private OT for Liam recently. He gets OT through our early intervention services already. But, after the evaluation at Chapel Hill with an OT who said Liam needed two hours a week just on his feedings, I knew we needed to get some one else on board to help him. Our original OT just doesn't have the time to do it. And she is all for making sure Liam gets what he needs. I really have awesome therapists who are very humble and although they take pride in what they do they are always willing and open to learn new things or bring in new people.

We had our first appointment with our new OT this past week. Of course, since it was the first appointment it was long, but I learned more things about Liam, was given new things for him to work on, and was told that he did some great things. It's always nice to hear that he's doing "great things".
1)She did a full oral stimulation with out him gagging.
2)He lateralized his tongue (moved it to the left and right from center)
3)He took food off the spoon instead of me putting it in his mouth for him.

She has changed how I feed him with the spoon. It's difficult because it is taking longer and I like the old way in order to get done quicker. But, it won't help Liam in the long run so I am having to retrain myself as well. And it stinks. I don't like having to feed him this way. I don't think he's really fond of it either. He seems to do a lot more gagging. He hasn't thrown up at feedings in a while and since I started this new way he's thrown up 3 times. I just don't have it down right yet and can't do it as well as the therapist! And the spoon is 3 times as big as the old ones!



I know he will get it. It's just one more thing to add to my list of things I need to be patient on.





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18 June 2009

Blogging award dealio's...

I have recently received two blogging awards.

And while I didn't originally intend to post about them, I just couldn't resist posting Sassy's cuz she's been my follower for a long time and I figured I owed her. She's one of my original gals. Plus her post was funny. And then I felt bad about not doing the one Dani gave me a while back and thought that if I did Sassy's I had better do Dani's too cuz that just would NOT be fair.

So, I will list Dani's first because she gave me my award a long time ago. =)



This one is the Honest Scrap Award.


I am supposed to say 10 things about myself with full honesty.

I hope some of you still follow me after this...

  1. I don't care whether my house is perfectly clean. I would LOVE LOVE LOVE for it to be clean. And I put on a nice pretense of having a clean house when we have company but for the most part my house has stuff everywhere all the time and there are no signs of that getting better anytime soon.
  2. I tend to replay conversations over and over in my head and wonder if I said something inappropriate or if something I said was misconstrued to mean something I didn't intend for it to mean.
  3. I hate hate hate to fight and have learned to let things go because most of the time it just isn't that important or worth it.
  4. I yell at my kids. I'd love to be one of those moms that can talk calmly and quietly. But I get angry and I yell (not all the time). My kids are stubborn, self assured and think they know it all. But I also think it means they will grow up self assured, strong and independent.
  5. I love playing the devil's advocate. I like healthy discussions about all sides of an issue. I like to argue my point or side just because.
  6. I'm very independent which makes my hubby and mom irritated. I'd rather just do everything myself and prove to myself how strong I can be. That's how I built my kids fort!
  7. I have a hard time reading the bible. I have to be very disciplined to do it and I usually understand it better if it is written as historical fiction. Some of my greatest "aha" moments came from reading biblical accounts written with a fictional subtext.
  8. I love to watch movies about the 18th century and think it would be really cool to live in that period. That time period brought about Mozart, Bach, Vivaldi, Stradivari, Austen, etc... How cool is that!
  9. I am very good at saying the wrong things at the wrong times.
  10. I always want to be a better mom, wife, daughter, friend and Christian than I am. And I always seem to fail trying.

Well that was kind of cathartic. I only looked slightly out of wack! LOL

I hope that didn't scare ya'all off. hee hee.

I'm supposed to tag 7 bloggers for the Honest Scrap award and I'll link to you below. You don't have to do it. But it was kinda fun!

Here's the rules:
(1) Thank the person who nominated you for this award. You don't have too.
(2) Copy the logo and place it on your blog.
(3) Link to the person who nominated you for this award.
(4) Name 7 things about yourself that people might find interesting.
(5) Nominate 7 Kreativ Bloggers.
(6) Post links to the 7 blogs you nominate.
(7) Leave a comment on each of the blogs, letting them know they have been nominated.

I'm tagging:

1) Tiffany at Our Gaggle An old friend...
2) Stephanie at Kennedy Bonomo A new friend...
3) Michelle at The Tomecko Echo A surviving twin micropreemie mom
4) Melodi at Marc and Peyton Twin micro's with miraculous results
5) Shanon at Kinnick Kay and Carver Lee Carver and Liam are a LOT alike
6) Audra at Green Meadow Lane Audra is talented and has beautiful stuff
7) Alyson at The Wellens Family Blogging buddy










Sassy gave me the Kreativ Blogger award. Thanks Sassy!

Here's the rules:
(1) Thank the person who nominated you for this award.
(2) Copy the logo and place it on your blog.
(3) Link to the person who nominated you for this award.
(4) Name 7 things about yourself that people might find interesting.
(5) Nominate 7 Kreativ Bloggers.
(6) Post links to the 7 blogs you nominate.
(7) Leave a comment on each of the blogs, letting them know they have been nominated.




I'm not sure if people would find these things interesting but since Sassy asked, here I go again...

  1. When Liam vomits his food while I am feeding him. I will catch it in the bowl and refeed it to him. I know it is reeeaaaaallllllly gross, but with all the additives in his food I'm not sure what to add in the next bowl if I have to start from scratch. Luckily he doesn't do it too often anymore.
  2. I love this webpage here.
  3. I want a tattoo. I have wanted one for a long time. Just something little and meaningful. After the death's of Kyle Ann and Brady I knew I would want something about them inked on me forever. But I still haven't gotten up the nerve. Or the money.
  4. I hate ear wax in my ears and due to years of over cleaning, I no longer produce any.
  5. I've been in the news. For positive and not so positive things.
  6. I only get 5-6 hours of sleep a night.
  7. A woman is pregnant for 280 days (average). Rylie was born 285 days after I got married.



I'm supposed to tag 7 bloggers for the Kreativ Blogger award:


1) Angi at Elizabeth Ann Lizzy and Liam have similar brain injuries & are micros.
2) Mollie at Only the Sheppards Dax & Liam have similar brain injuries & are surviving twins
3) Kellie at Brad and Kellie and Carter reflux comiserators and a CDH survivor
4) Chase's mom at Chase Britton Chase has similar issues as Liam
5 ) Steph at The Hopeful Sandersons micro preemie
6) Ashley at I Never Imagined surviving twin micro with CP
7) Jill at Forever n Ever n Always they are an awesome family

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An arsenal.

>

Liam has volume limits due to delayed emptying of his tummy and reflux. Because he only takes in around 12 ounces of formula a day, we have resorted to getting as many high calorie additives into his solids as we can.

We have accumulated quite an arsenal against the necessity of a gastronmoy tube.

Luckily Liam has continued to slowly gain enough weight to keep a g-tube back in the recesses of our mind.

But, in order to keep him nutritionally supplied we have had to resort to putting high calorie additives, vitamins, and medicines to his solids.

For breakfast Liam gets Soy Baby yogurt or Boost with rice. I then add a scoop of Duocal (dried and powdered oils), his erythromycin (to help with emptying) and choline (great for the brain). This equals 115 calories or more depending on the amount of rice.

He gets a 3-4 ounce bottle Boost with a scoop of Duocal before his midmorning nap. 145 calories.

Lunch is always a jar of chicken (I'm now starting to add a few teaspoons of a veggie to it), scoop of Duocal, his NutriStart multivitamin, and a tablespoon of butter or safflower oil along with a teaspoon of flax seed. 255 calories.

Afternoon bottle of Boost with Duocal. 145 calories.

Dinner consists of a multi nutritional food (mac and cheese with veggies, ham and rice with pineapple, etc.) Duocal, and tablespoon of safflower oil or butter. 285 calories.

Night time bottle of Boost, Duocal and two teaspoons of Miralax. 145 calories.

On a good day, with no vomiting, Liam will take in over a thousand calories with this routine.

On a good day.


We usually don't go a day without vomiting but after increasing his prevacid dose and continuing back on the erythromycin, his reflux has been under better control as of late. While it isn't ideal beacuse he is getting a large portion of his fats through oils, it is enough of a nutritional balance with his jarred foods, Boost and multivitamin to keep him healthy.

And healthy he is as of today. He has been virus free and feeling like his happy, giggly ole self.

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17 June 2009

Sleeping Photos


How I found my youngest daughter this morning. I mentioned to her that praying while sleeping didn't count.

How I found my oldest son the other night after he spent hours reading literary classic Lord of the Rings. Yes, that is a lamp on his head.



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16 June 2009

It's gone.

It was one of the hardest things I have ever had to do. I stood there for a good ten minutes before I could bring myself to do it. I talked myself out of it and then talked myself back into it. I needed to wait but knew it needed to go. So, finally I got up the nerve and did it. It's done and I'm happy about it now that it's over. What is it, you ask, that was so hard to do?

I cut Liam's hair! Sniff sniff. Or snip snip I should say.

Liam has adorable curls on the back side of his head that I have posted about before here. Unfortunately, as he has gotten into that army burrowing thing when he's on his tummy and his hands come up to his head. He then grabs his hair and doesn't let go. EVER. We have to pry his hands out of the entanglement of his hair. He has literally pulled out clumps of his own purty hair.

You can always tell when he has his hair in his hands because he has this horrible gutteral cry. It is very distinct and like no other he does. So we all go running when we hear him crying like that in order to try and save his hair and save him from some needless pain.

But he isn't getting it yet.

And I can't stand that cry.

So, I decided it was time to take the scissors to his sweet little head.

The hardest part was knowing that once I cut off the curls they would never be back.

All of my kids have had curls in the back as babies. The girls kept theirs because their hair grew out long. The curls never left until they were much older and the long hair needed trimming. But with my boys, they have had to lose their curls early. Ian lost his at 6 months when he got a big boy hair cut.

But, I didn't want to give Liam a big boy hair cut. I wanted him to stay my baby boy with the adorable curls. But I knew it would be easier for him once he couldn't get his hair entangled in his fingers. And sure enough, now that its gone, when he grabs his hair he can let go.

Well, unless he grabs the top which I wasn't about to cut yet.


He went from this...


to this...


He looks pretty handsome. If I do say so myself.


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14 June 2009

Peeves

I'm generally not a complainer (my hubby may disagree, but really. I am not.)

But I just had a few things on my mind lately that have been bugging me. Just a few.

In no particular order the things I have been slightly irritated at are:

Buying green bananas with the intention that they will ripen at home and allow them to last longer than if you bought the already bright yellow and ripened bananas only to have the bright green ones never ripen at all!

Boxes of granola bars only having 5 bars in a box! The box is square! There should be an even number of bars in there! Did they think we wouldn't notice! And then they charge the same price as a box with 6!

The jumbo size box of Huggies wipes has 448 wipes. Which is an even number of wipes. But there are only 7 packages of wipes. Again, Its A Square Box! There should be 8 packages in there!

Laundry detergent, dish soap, and cleaners going to "concentrated" formulas.

Onesies that say 18 months but when you get them home and wash them they are clearly now only about 9 mo.

Putting laundry on the floor beside your hamper. OR, trash on the floor beside the can. Towels on the floor beside their hook... You get the idea.

Deer eating my gorgeous flowers and plants that were intended to feed MY family.

Bickering children (MOM, Ian breathed on me!).

Telephone solicitors who can't pronounce my last name.

Walmart's Pharmacy.


This was just a few that are currently on my mind. Feel free to add your own to the list. I can't be the only (part-time) complainer! Right?

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10 June 2009

Sickening

I had jury service on Tuesday morning that I wouldn't have minded going to if Liam still wasn't sick. It was a civil trial so it was going to be short and done in one day. My kind of trials, for sure. I did ask to get out of it when I got there and the clerk said that if I could just wait around until they started picking jurors that I might be able to be dismissed and I would be done for two years. I decided to wait. I had already postponed it once before and I didn't want to postpone it again because they only postpone it for a few weeks and then your due back in.

I got picked for the jury. But the defendants attorney was very kind and when I told him I would like to be home with my inconsolable baby he let me go. Very considerate.

While I was waiting around watching jurors get dismissed, my mom ran Liam over to our pediatrician again. He still was not doing good and was actually acting worse. He woke up crying and if he was awake, that was all he would do. And when he fell asleep he wouldn't stay that way for very long.

They checked his blood counts again and they all still looked good but there was a shift showing that what ever he was battling was viral.

I had only been giving Liam Tylenol and apparently that wasn't good enough to really kick him out of his high fever pain. I got some Motrin and that finally got him to quit crying. He still wasn't feeling well but he wasn't miserable so it was a bit of progress nonetheless.

He has spent the last 4 days feeling miserable. He normally loves his baby yoga. We do it first thing every morning and he hasn't let me do them with him since he got sick. He wouldn't even smile. None of our regular tricks would work.

But this afternoon, he finally seemed to break free of his funk. He smiled again. He squealed again and seemed to enjoy life again. I'm praying this virus is on it's way out of his system.

I know I've said this before, but it just amazes me every time it happens. Liam is such a happy go lucky, easy going guy. He smiles all the time and he loves to play and he just takes things as they come. But when he is sick, he is a completely different baby and it is so hard to take care of him. I always appreciate Liam and his personality but it is a sobering reminder of how great he is when he suffers like he did this last week. And it makes me realize how badly he must be feeling when I go 4 days with out a smile from him.

A friend of mines daughter has been feeling miserable too and it's just so hard to take care of our special little ones when they are sick.

Be careful. Some nasty viruses are still floating around this spring.


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07 June 2009

Again...

Liam is sick...again. He started running a fever again yesterday morning and because it was almost 103 degrees and Saturday, I decided to take him in. I told the Dr that this was his second round of fevers in 2 weeks and that last month his white blood cell count was low so I was concerned.

I figured he would hear something in his chest or see something in his ears. He decided to go ahead and run a blood panel really quick and see what that showed since he had the "off"results last month.

He came back with the results and declared that I have one healthy boy.

His lungs sounded crystal clear, ears looked beautiful (his words) and his heart sounded lovely (my words).

And to top it all off...

Liam gained a half a pound this month!

I know.

I don't know how that happened either. He has been eating considerably less and since he has been sick he has vomited a lot too. He hasn't taken his night time 4 ounce bottle in weeks! Go figure. I have no idea how he managed to pull it off. But I am thrilled that he finally hit the 17 lb mark. 17 lbs 8 oz to be exact. Very cool. No g-tube this month.

So, I now have a declared healthy boy who seems anything but healthy. He is miserable. He cried all morning, won't laugh at any of the normally funny antics we do around here and he is sleeping. A lot. So, I guess the sleep is a good thing because it stresses me to have an inconsolable baby. But, then, it stresses me because he isn't up and feeling normal. Ugh. I just want him to get better fast.

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05 June 2009

Long GI post. I got a little wordy.

We don't have a pediatric GI doctor here. I had heard good things about Chapel Hill and for some reason it stuck in my mind that there is where we should go if I ever needed to get Liam in to see one.

Once Liam's reflux and feeding issues reared their ugly heads and took on a life of their own, I figured it would be as good a time as any to get him in.

Unbeknown to me, you can't just call and get in to a GI doctor in Chapel Hill. You have to get your referral first, of course, but then they send you a letter telling you to call and make an appointment. But it isn't that simple. Oh, you can call, but you can't make the appointment. I know, it doesn't make sense.

See, you can call and tell them you have the paperwork now in order to make the appointment but it does you no good if they don't have any available.

Here's how it went.

I call and say I need to make an appointment. The person on the other end of the line (who makes appointments for everyone at Chapel Hill) tells me that they don't have any available. Huh, what do you mean? She says that all the available visits they had open have now been booked and to try back tomorrow to see if they have any new visits available. Uh, okay.

Next day I call back. I get the same message. This time I got wise and asked when they were booking appointments. She said they were just now starting to fill August (This was back in April). And they needed to know the Dr's schedules before they can book any. Hmm.

I call again the next day. The lady tells me they just filled the new days that they had open and to try again tomorrow.

The next day, I get the message that they don't even have any new days open yet for August.

Seriously, this kept going on and on until I told her to get me the GI department so I could leave them a message. I was tired of trying to make an appointment 4 months away based on luck! She transferred me and I left a lovely message with them telling them how stupid and inefficient their scheduling department was and that people like me don't have all day to keep calling to see if an appointment pops up. I told them to just make me one and call me with a date.

I never heard from them.

Shortly after telling my OT and PT my frustrations with Chapel Hill, my OT did some calling. I am not sure who she called or what she said, but I got paperwork in the mail saying I had an appointment very soon after her calling them. Little did I know that the appointment wasn't with the GI Dr. I assumed it was for GI since that was who I was trying to get Liam in to see. When I finally noticed it was OT, a few days before the appointment, I decided to keep the visit and see what she had to say regarding Liam's oral issues and his feeding issues. And then have my OT work her magic again to get us into GI.

I'm so glad I went because their OT was able to fast forward three months of waiting for a GI appointment and got us in within 2 weeks!

I showed up on Wednesday thinking I was meeting with just a nurse practitioner because the OT said the NP's really do all the leg work and then a Dr will oversee things.

What I got was a lot more than I expected. We saw the nurse practitioner and she was filled in with all of Liam's GI issues. She got as clear a picture of him as she could. She said we could schedule the g-tube and get it done quick with no problems. I didn't say anything. I just nodded my head. We continued to talk and decide to up his prevacid dose just a bit. We also figured we should go ahead and do all of the GI tests that are normally done for kids like Liam who reflux badly and seem to empty slowly. They are going to schedule an upper GI, motility study and a barium swallow. Then we will have to go back again for them to do an endoscopy.

After talking with the NP she recommended we see the dietitian. The dietitian came in and tried to get a good view of Liam's calories and nutrition. She didn't have much more to add to what we are already doing. Then the Dr came in. Which I didn't expect at all. She talked to me at length as well and then they had us go for lab work.

I took one look at the lab tech and KNEW she wasn't going to get the vein. That mommy intuition thing rules!

Except I didn't use it to my advantage and I let her poke him anyway. And nope, she didn't get a vein. She ran that needle all over under his skin and he didn't bleed even a tiny drop. The second tech looked at the crook of his other arm and decided to try his hand. She got it on the first poke. God bless her. They took 5 vials to check all of his nutrition levels, kidney and liver functions. If his diet is too poor, it will show up in his lab work.

We then went back to see the NP one more time and she said she looked forward to working with us. I told her I wanted to wait some more on the g-tube. I wasn't against getting it...but I want to make sure he definitely needs it. I have been very adamant about not getting it for a long time. And I want to be very sure before we proceed.

My heart has softened towards it so much. I know the Lord is helping me let go of my stubbornness about it. It also doesn't help that I am not sleeping. A year of no sleep makes the g-tube sound like a dream.

Either way, what's best is what's best for Liam. And I will do and accept what needs to be done in order for Liam to grow and thrive.

So, I am awaiting notice of his scheduled tests and then we'll go from there.

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04 June 2009

Babysitter

Liam has sensitive skin and just pulling a piece of tape off his skin brings him to tears. Sometimes, when I pull off his bib and accidentally get a hair or two in my fingers he cries. He doesn't like pain in any form at all. So, when I saw this:




I was a bit upset.

My baby sitter was bent over Liam and talking to him while he was in his stroller today and unfortunately his gum popped right out of his mouth and into Liam's gorgeous hair. Yes, those red marks in the photo is where the gum got stuck. And stick well is what it did. I tried to pull off as much as I could and this is what was left after my attempts. Liam spent the whole day with it in his hair because I didn't have the time to get it out and I didn't want to cut it. So tonight I saturated his hair in olive oil and after it soaked in I was able to scrape the rest of it out.

And Liam didn't make one peep!

Oh, and the baby sitter? Ian is fired.


~~~~~~~~~~~~~~~


I got to thinking.

Out of pure curiosity...

And I wondered who all has come across Liam's journey and how.

I know we have a lot of anonymous followers and that's fine. I like to anonymously follow blogs too. Sometimes you follow and never feel the need to comment and sometimes you follow just because you can relate in some way and look forward to checking in to see how their journey is going. Sometimes it's because they are a friend of a friend of a friend.

But I keep wondering at who everyone is. Who visits? Why? It's so much fun for me to check into the blog and see that in one day I've had 100 hits. Places I've never heard of pop up on our location map and I wonder what your story is and how you came across our story. And I wonder what keeps you coming back to Liam (assuming you come back). Well, I know he is adorable...

Anyway. Would you mind leaving me a comment? You can remain anonymous. But would you answer a couple of questions for me?

How did you find us?
Where are you coming from?
What keeps you following Liam/us?

I'm just curious.

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01 June 2009

ARGH!

That is the title of my post for a couple of reasons.

But, I'm going to back up really far in Liam's history for a second. Liam had to have laser surgery on both of his eyes due to stage III ROP (retinopathy of prematurity) disease while he was still in the NICU.

Vessels at the back of the eye grow from the retina toward the optic nerve. In premature infants the vessels can grow abnormally. If the improper growth of the vessels are left to themselves they will cause the retina to detach and lead to blindness.

Just a fun fact: Infants born at 3 lbs only have a 5% chance of developing ROP. Infants born under 2 lbs have a 40% chance of developing ROP. Liam weighed 1 lb 5 oz.

Liam's eyes were checked every two weeks starting at 30 weeks gestation (January 15, 2008). His first two exams were normal and then BOOM! he's at stage III and needed surgery right away (by February 10, 2008). Liam's vessels didn't grow very far from the retina at all and were already starting to hemorrhage in one of his eyes. The Dr. said it was a very difficult surgery due to the fact that Liam's vessels hadn't grown out much. He had to laser a lot and he had to sacrifice Liam's periphreal vision to save the retinas.

Liam's ROP disease completely regressed and he no longer has the disease. His blood vessels have now grown out properly but he still needs to be seen by a pediatric opthamalogist every 6 months to make sure everything still looks good. Kiddoes like Liam are at future risk for retinal detachment due to the surgery and keeping a close eye on them is prudent to say the least.

Liam also has a little side issue related to vision but not to his eyes (brain and eyes have to coordinate in order to see). Liam has Cortical Visual Impairment which means that the eyes function just fine but the brain doesn't interpret everything correctly. There is huge variation in CVI from mild to severe. Liam's vision can continue to improve and he can move up the CVI scale making his impairment less and less of a factor in his ability to see. Last year Liam would be classified in the severe range (1-2) and now he is in the mid range (5-6). Cool, huh?

Liam had one of his follow ups today at the Duke Eye Clinic. Six months ago Liam was looking at his books and smiling at them but wasn't looking at videos, tracking large pictures or seeing distances. He also was only slightly near sighted. Today, Liam tracked the largest picture, laughed at the animals on the video and without his glasses on, smiled at me when I stuck my face in front of his. What a difference 6 months make!

Now, this is where we finally get to the pirate noises...

The Dr at Duke differs in her opinion of Liam's correction on his glasses from what he received from the local Dr. Yes, he is very near sighted and needs correction, but does he need correction to 20/20 when his field of vision is in front him and not 20 feet away? It's a great point and one I would never have thought of. Does it harm him to have corrected lenses for 20 feet away when he can't see that far? No, but it does change the size of the objects he does see. So, they don't like to correct for anymore than a 3. Liam is a 12. That's a big difference! Argh!

Liam's esotropia (independent eye focusing) hasn't gotten much better with his glasses yet. So, we are going to start the patching. The local Dr. here said we should patch one eye for the whole day and alternate the eyes every other day. The Dr. at Duke said to only patch the eye that turns in the most (his right) and only patch it for 2 hours a day. Argh!

And because he now looks like a pirate...


ARGH!











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