29 May 2009

Liam is still running a fever off and on. It's never over 100.5 but it's enough that it can make him pretty cranky. He's such a normally happy fellow and doesn't usually complain when Cathy does therapy but he didn't want to participate too much this Thursday and was done before his time was up. Which, if you knew him, is very unlike him. He generally loves having Cathy work with him.

Today he napped from 10-12:00 and fell asleep again at 2 and slept until 4. Clearly he needed to rejuvenate himself! Last week I was lucky to get an hours worth of sleep in! Plus, he is refusing to eat his night time bottle. I would be freaking out (kinda am) but I keep reminding myself he doesn't feel too hot (well actually he does, ha) and that I don't like eating when I don't feel good either.

Liam does this weird thing when he is on his tummy. And It ticks him off. He will bring his arms up behind his head, grab his hair and then tighten up his arms, back and neck to where he looks like he is trying to burrow into the carpet head first. When he finally realizes he is going nowhere he will relax. But he usually, at that point, has a death grip on his hair and he doesn't let go so he cries out in pain.

The ABM therapist said not to put Liam on his tummy right now because he is getting no where when he does that and he is using the wrong muscles and wrong movements and that's not the pattern we want him to continue to do. So I have worked a lot with Liam in side lying and with his rolling. He is doing really good in side lying. As you can see here. He couldn't lay like this a couple of months ago.

He would arch out of the position every time we put him in it. He is also bringing his arms in midline and holding them in a more natural relaxed position. It's very nice to see. Where he started and where he is now are like night and day!

But I have noticed that all of the time away from being on his tummy has caused Liam to go downhill in his head lifting. He was regularly increasing the seconds he would hold his head up but has not been able to do as well recently. I know that is because I haven't been putting him on his tummy. Partly because he does his little burrowing act and he gets so mad and partly because one of the therapists said it wasn't a good idea right now.

I don't want Liam to backtrack. Every gain he makes is a milestone and we need to keep his milestones coming. So, I started putting him back on his tummy again this week. I already, after just a couple of days, have seen him working again to get his head up. But the coolest thing is that he is using his arms (all by himself) to try and push up. I don't think he has ever really done that before. I normally have to help him bear weight on his arms. But tonight he seemed to be kicking the muscles in on his own and was pushing up with them just the slightest bit.

I told you, I'll take every milestone I can get!

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27 May 2009

This was Liam a few hours ago due to a 100 degree fever. He just gets so cranky when he is running a fever. What's weird is that he gets a fever every now and then but it never progresses into anything and he never has any other symptoms. I guess I should be thankful...

Cuz this is how he was feeling just a few minutes ago.

Why yes, that is a pom pom on his head.

We had out first minor fiasco with his glasses this week. Ian went to pick up Liam out of his crib and noticed that his lens was missing on the left side. The frame was also popped apart and the screw was missing. We looked all over for it and couldn't find either one. I finally found them both under the blanket he had been laying on. I couldn't believe the screw was right there with it considering how itty bitty they are.

We got them all fixed up and that was that.

But the next day, when I was feeding Liam, his lens popped out again. I missed it happening so I don't know how he did it but I found the lens and the screw was gone. Because it was a holiday weekend the optometrist was closed and we couldn't find a repair kit at Wal-mart so Liam went for two days with no glasses. It was kind of interesting because it seemed to me like he was trying harder to focus and it made his esotropia a little less noticable. At least it wasn't a major issue because we only get one free repair on these.

And I'm still waiting to hear back from someone about getting his GI appointment. Sheez, you'd think we already had universal healthcare or lived in Canada or something!

Liam is back to being the little cranky pants in the first picture, so I better go get the Tylenol.

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21 May 2009

Vision update

At Liam's first appointment with Dr. D. last month, she put a black and white drum in front of him and spun it. She said it was a tool used to check for cortical visual impairment (which Liam has been diagnosed as having). She spun the drum and said that proper visual response would be for the eyes to "jerk" in the opposite direction that the drum is spinning. Liam's eyes didn't jerk. As a matter of fact, he didn't pay any attention to the drum. He was looking everywhere but at the drum.

She then dilated his eyes and checked things out before putting on a pair of spectacles that would be in his corrected lens. She spun the drum again and "thought" she "might" have seen a bit of "jerk" with the lenses on. His eyes were dilated so big that I didn't take much stock in that assumption.

We are now a month out from our initial appointment with Dr. D. and she wanted to see him back to see how he was doing with his corrected lenses. She asked me how I thought he was doing. I told her that I thought he was doing fabulous because before the glasses he didn't care one smidge about Baby Einstein DVD's and now he will watch them! That, to me, was incredible!

We then sat in the chair and she put the CVI drum in front of him again.

She started spinning it.

And Liam started laughing at it!

He was looking at it and his eyes "jerked"! How awesome is that? She said she really felt that Liam's CVI will start to fall by the way side now and that his vision should improve a lot now that he has the corrected lenses!

We do still have the problem with his esotropia (eye turning in) and we will address that at his next follow up in one month. She wanted to give his eyes ample time to adjust to the glasses before resorting to patching.

I really should pray about that because I honestly have never done so for his esotropia. I just haven't thought to do so as all my prayers tend to focus on head control (as if asking for only that one thing will make God more inclined to do it). I would LOVE for Liam to start focusing both eyes at the same time so he doesn't need patching. Hmm. I think I've had my mind opened to the fact that I should be praying about it. So, I will.

*Oh- and yes, those are Liam's glasses and my glasses on my laptop.

I figured you were wondering.

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18 May 2009

Feeding Evaluation

Liam has oral issues.

We have had him in OT since November and due to the delicate nature of his gagging and vomiting, his OT has wanted to be very gentle with Liam. She doesn't want to push him and have him throw up what little volume of food he takes in. I have tried hard to avoid the g-tube! But we've walked such a fine line that I feel like we haven't been able to help him at all.

Liam has a multi-faceted problem that I was well aware of a long time ago. He has issues with:
1)Oral motor
-and a few other minor things that all add up to a lot of obstacles.

But Liam has been able to drift along for a long time with out any real concern. His Pediatrician didn't feel it necessary to have a GI consult since he's still s l o w l y gaining weight even though I wanted one a long time ago.

So, we drove to Chapel Hill today for a feeding/speech evaluation by their OT. Our local OT wanted to get feedback from someone else on what to do/not do to help Liam along with his oral motor skills. The evaluation went really well and I know she got a good look at the problems.

I didn't feed Liam after his early breakfast because they wanted him hungry when he got there. We didn't get into the appointment until 1:00 and it was around 1:30 before I actually offered him a bottle. He took some of it but clearly wasn't all that hungry after going hours without food because he only took 2 ounces. She asked me if he ever gets hungry. Uh, that's a big NO.

She asked a bunch of questions. She watched him eat from a bottle and a spoon. She felt him as he ate and watched as he threw up all of the food I had just given him. ...SIGH...

But her primary concern is getting him in for a GI consult asap. She said to me all the things I knew already...

He has reflux. And it's bad. His morning vomiting (on an empty tummy) is because of the reflux.
He is most likely emptying very slowly from his tummy.
He has such a strong gag and with the full tummy it makes everything come up.

And until these things are taken care of, she said his oral motor skills are going to suffer. She said that his skills are rudimentary and that they are working for him now but that as he gets bigger and older they aren't going to work anymore. :o That was news to me but probably not to everyone who has watched him eat. Especially as I think back to the cranial sacral therapist who said she had never seen a child with such complex issues not have a g-tube! Um- thanks?

I am hoping she will have the strings to get us in to GI faster than I could. When I tried to schedule an appointment they weren't even taking appointments until August! Clearly it won't be a good idea to wait that long. Especially now that my little man is thinking he can just bite the bottle and not drink it anymore. It makes for a very irritated mommy and I am sooooooo tired of our sleep feedings. I have only gotten 5-6 hours a sleep every night for over a year. Last night was the first night ever that I actually wished he had a g-tube! I tried to banish that thought but I am a mad, sleep deprived woman!

Anyway, after some GI help we can then focus on his oral motor. She gave me some tips and why they are important for him. She said to put the food on the sides of his mouth and alternate between sides and the front to get him to work on his lateralization. She also wants me to hold his chin while he sucks from the bottle to help him learn to properly suck (I tired this ages ago but I didn't stick with it because I wasn't sure I was doing what I was supposed to nor did I know why I needed to do it) which is difficult because I only have two hands. And she said to try feeding him sitting up straighter.

She did say that he is a very accomodating boy. And he really is. But, we want to keep it that way and it most likely won't stay that way when he doesn't care about eating, doesn't feel good about eating and doesn't get hungry. He just puts up with me right now. =)

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16 May 2009

Congrats to Dani for winning my Streams in the Desert contest! Just send me a quick email with your address and I'll get it sent out to you. Thank you to those who entered! Rebecca- I have to tell you... You posted the second post. When I went over to random.org to generate a winner, the first two times I did it, post number 2 came up. But I was already planning on giving you one anyway! So, I'll get one to you shortly too!

And thanks for all the replies about my encounter with stupid comments from well meaning strangers.

The whole point in my post was not too say that Down's was a horrible diagnosis. I think most of you understood that. I always denied it every time they wanted to test my unborn babies for Down's because it wouldn't have made a difference to me. My child would be loved and appreciated no matter how God chose to line up their DNA.

My point in it all was that Liam doesn't have a gene disorder, doesn't look like he has one and doesn't need some stranger saddling him with a diagnosis after spending 5 seconds with him. It's impolite. It's inappropriate. It hurts people's feelings. And it was as discriminatory as it could be!

My struggles with Liam's daily life are brought to new lows when the ignorance of others is set right in front of me. I don't expect everyone to understand that Liam has a brain injury due to being born 4 months early and that it effects his muscle tone. I don't expect people to look at him and know that he has overcome so many things in his short life to get to where he is today. And I don't expect people to understand that we are so proud of him because he has to fight so much harder than anyone you probably know to get to do what comes so easily to everyone else.

And I don't expect everyone to look at him and not think he has something going on that challenges him. But, really, to meet someone and ask such a rude question is beyond my grasp. It's people like that that make me want to stay home and never come out. It's people like that that prompted my post here before.

Whatever happens with Liam, he is not the only kid out there with a disability and he can't be the only one that is going to prompt questions and looks of wonder. My point was that people need to learn some manners and proper etiquette. I wouldn't have minded the question if it had come from the innocence of a child's mind. Children are very curious and naturally want to understand the differences they see. But an adult should know better. Please think about what you are saying, measure your words carefully and consider what the other person may feel by your remarks.

  • Ask before you touch someone else's child. Even a typical child may have just overcome their umpteenth cold this season and the last thing their parent wants is another one. Germs live for hours on surfaces. You may have unwittingly grabbed a hold of the virus and are passing it right on to someone's sweet little babe.
  • Don't ask "What's wrong with him/her?", "Do they have _______ (insert your diagnosis here)?"
  • Don't feel sorry for people who are disabled. They bring a unique view of the world into the lives of the people they encounter and they enrich our world for the better. We don't want our kids feeling sorry for themselves.
  • Don't stare.
  • Don't talk about the family/child while they are near. Often times, we can hear you.
  • When the family mentions the child's disability or challenges, don't test the child as if what the parent said isn't true. Example- I once told someone that Liam doesn't see faces well. They bobbed back and forth in front of him trying to get him to look when I had just told her he couldn't see.

This isn't an exhaustive list. It's just some suggestions that will go a long way in helping children and their families live life a little easier without the negative attention that can come with challenges. If you haven't walked in our shoes, you have no idea how hurtful comments can be.

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13 May 2009

I've got to figure out how to take pictures and not get a glare on his glasses! I needed the flash though because the room was too dark with out it. If you know the trick, please let me know!

I love this photo because it shows off Liam's big toothy grin. I LOVE that he has only 1 top tooth. It's been that way for months. I think I'm gonna be really sad when the other top tooth comes in.

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12 May 2009

Some people-

Would you please take a good look at the photo of that gorgeous little boy up there at the top of this blog? Does he look like he has Down's Syndrome?

Well, somebody thought so tonight.

A woman, whom I have never met started talking to Liam at the ball game tonight.

I had Liam on my hip while we were seated in the bleachers. She grabbed his hand (and I am cringing the entire time she is holding it , thinking she doesn't know about RSV, swine flu, etc.. or she wouldn't do that!) and starts chatting away to him and to me. I honestly couldn't tell you what all she was saying because I was so distracted by thoughts of viruses.

All of a sudden, my attention turns right to her as I hear her say, "Does he have Down's Syndrome?"

WHAT? What did you just ask me??

In the 5 seconds it took me to respond, I had several different scenarios running through my mind.

Do I educate this poor woman and tell her he has CP?

Do I then want to engage in a discussion that will surely follow about his birth?

Do I just say no and ask her what she means by that? Does he look different to you? Because he has glasses does that automatically mean he has a gene disorder?

Do I ask her if she's crazy? How rude can you be? If you are overweight do you assume the woman is pregnant?

I finally decided on the simplest, yet most profound response I could think of.



She didn't even apologize! She said something about what he was doing and that he reminded her of.... and then she quit talking. I hope she realized she was just digging her hole bigger. But an apology would have gone a long way.

I was upset. Shawn coaches the team so I was alone. And I didn't know any of the parents on my son's ball team this year but I knew one of the mom's on the other team so I headed over there to let off some steam. I was so thankful I did.

Sherry asked me if I wanted her to go whoop on her when I told her what had just happened. Of course not. I am sure she didn't mean any harm. I am sure she was just trying to relate to me in some way?

And then Sherry told me a hilarious story.

When her son Caleb was little, they were in Wal-Mart. Caleb had a medal on a ribbon around his neck. The Wal-Mart associate started talking to Caleb and Caleb was talking back as well as a 3 or 4 year old kid will. Then the associate turned to Sherry and asked if Caleb liked sports. Sherry stated that he sure did. And then the associate said, "You should get him involved in the Special Olympics. I'm sure he would do really good!"

I laughed so hard. Caleb is a perfectly healthy boy! It was just what I needed to unwind from my irritation. My irritation isn't completely gone because I am hurt that people would say something like that. People just don't think or realize what they are saying! And they don't realize the impact of their words. If he has Down's Syndrome it would have been different. But, he doesn't and to assume a disorder on someone you have just met is completely weird.

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11 May 2009

Dietician? Nutrinionist? Anyone?

I have had questions about Liam's nutrition for quite a while but I have never gotten any response that has been adequate enough for me to feel at ease with what he eats.

Liam eats.

He just isn't a superstar with it. Well, actually he is, but that isn't what I mean. Theoretically, Liam should have problems eating solids because of his level of CP, his vision impairment and his gag reflex.

But, Liam is shockingly decent at eating second foods from a spoon (clearly no one gave him the memo). He doesn't mind trying new flavors and he does pretty good with mild textures. And he is very open to trying new things. The first time he drank from a sippy cup he shocked everyone. It was recently brought up that they would like him (within the next year) to put a biter biscuit in his mouth. So, I thought why not try it now! I stuck a biter biscuit in his mouth for the first time yesterday and he sucked on it for 20 minutes!

But his superstar status is dimmed by a few extenuating factors. Liam has a decent gag reflex. It isn't horrible but it is pretty strong in that when he moves his tongue just right (or wrong) it will cause him to gag. He also seems to have a tiny tummy limiting the volume we can shove get in there. And I think his tummy empties pretty slowly keeping him feeling like he has had a big turkey dinner three times a day.

And if those GI issues aren't enough, he has reflux. UGH.

And I can relate to the reflux. I have horrible reflux. I have been on and off numerous PPI's for over 5 years and nothing seems to help me. So, I know how Liam feels when his tummy is full... he refluxes more which can cause him to gag and then he throws up.

Because of all of these separate, but united, issues working against Liam, I have had concerns about his nutrition.

Liam will only take around 3 1/2 ounces of formula at a time. Any more than that and he is so uncomfortable that he will reflux and vomit. He does eat three meals a day. All in all though, he only takes in 18 ounces of food a day (IF he doesn't vomit).

Due to the small volume of food, I have had to add things like Duocal, safflower oil, butter and sugar to his foods to beef up the calories. Which, for the most part, seems to be working. Liam is still gaining weight (although very s l o w l y) and there is no mention of a g-tube because he does eat.

My concerns are whether he is getting the proper nutrition for his age.

We were finally able to see a dietician (on loan from Duke and trained in overweight children's issues) this past week. I came in armed with all of my questions and left with none of them answered. UGH.

In defense of this lovely lady, she said she would seek out the answers and get back with me. I mean, really, what did I expect from someone who has no clue about micro's and undernourished kids? She is trained in the opposite problems. So, for now, I continue to trudge on in the hopes that Liam is getting what he needs.

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06 May 2009

Advice I was looking for...and a giveaway because of it!!

Can't the unexplainable moments in your life be amazing? How is it that when God can seem so far away, He blows us away with a tangible reminder of His presence!?

I mentioned in my post yesterday that it is hard to know what to do at times when we can't see God's plans. Do you accept what is going on and take things as they are or do you continue to pursue and hope in the plans that you dream of? Do you continue to pray or do you move on into the reality of life with unanswered prayers?

Let's face it. We all have unanswered prayers. But how many of those prayers did we give up on? How many times have we given up on God? If you give up praying, you have given up on the only one who can answer that prayer. You have given up on God himself. And I am completely guilty of giving up. When prayers don't seem like they are coming to fruition I assume that God isn't going to answer my prayer in the way I want or he isn't even going to answer at all. But I have then made a horrible mistake. I have given up.

Today I opened my daily devotional, Streams in the Desert, to today's date.

This devotional was given to me by my friend Rebecca while I was in the hospital with Liam. It came to me ragged, wearing out and well loved. And I believe Rebecca said it was given to her when she was experiencing some tough times in her life. I want to post today's passage because it is worth the time it takes to type it all out on here. It is worth it to me to reabsorb what it contains and I know it will be useful to you as well.

Jesus told his disciples a parable to show them that they should always pray and not give up. Luke 18:1

The failure to persevere is the most common problem in prayer and intercession. We begin to pray for something, raising our petitions for a day, a week, or even a month, but then if we have not received a definite answer, we quickly give up and stop praying for it altogether.

This is a mistake with deadly consequences and is simply a trap where we begin many things but never see them completed. It leads to ruin in every area of life. People who get into the habit of starting without ever finishing form the habit of failure. And those who begin praying about something without ever praying it through to a successful conclusion form the same habit in prayer. Giving up is admitting failure and defeat. Defeat then leads to discouragement and doubt in the power of prayer, and that is fatal to the success of a person's prayer life.

People often ask, "How long should I pray? Shouldn't I come to the place where I stop praying and leave the matter in God's hands?"

The only answer is this:
Pray until what you pray for has been accomplished or until you have complete assurance in your heart that it will be (accomplished).

Only when one of these two conditions has been met is it safe to stop persisting in prayer, for prayer not only is calling upon God but it is also a battle with Satan. And because God uses our intercession as a mighty weapon of victory in the conflict, He alone must decide when it is safe to cease from petitioning. Therefore we dare not stop praying until either the answer itself has come or we receive assurance it will come.

In the first instance, we stop because we actually see the answer. In the second, we stop because we believe, and faith in our hearts is as trustworthy as the sight of our eyes, for it is "faith from God" and the "faith of God" that we have within us.

As we live a life of prayer, we will more and more come to experience and recognize this God-given assurance. We will know when to quietly rest in it or when to continue praying until we receive His answer.

Isn't that amazing???

I asked yesterday what to do and God showed me this morning! I will continue to pray and wait upon Him. Yes- it is very hard to do. I like to give up. But that isn't an option!

This devotional is very inspiring. It is firmly rooted in scripture and it will not only encourage and comfort you, it will give you strength and insight into God's word.

Because this book was passed to me in my time of need, I want to pass it along to someone else! I know how much I have benefited from it and I know whoever gets it will too. But, you will get a brand new copy!

How do you get one? Just leave a comment on this post and I will randomly select a winner! That's it! Oh- and I will leave the "contest" open for a bit. I know someone is going to benefit exponentially from getting this book and I can't wait to send it out!

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05 May 2009

So good to be home.

As much as I was looking forward to our trip and as much fun as it was, it is always good to come home! Not to mention that I was keeled over in pain on the drive home due to my back not liking the comfy hotel bed! Getting older sucks- my back doesn't like change! I can't imagine how it was in the old days to live as long as Methuselah.

We did some (ok, it was a lot) of shopping this trip. I had fun, for once, with it because it was the first time I have really needed to go buy clothes for Liam. He has gotten a lot of wonderful hand-me-downs and has never needed anything more than the occasional onesie from Wal-mart. So, it was fun for me to take him out and go shopping. I might have gone just a bit overboard but with the cheap prices and the usual change of clothes at least once a day (due to vomit), I will be able to only do his laundry once every 2 weeks! Yeah me!

Liam was able to stay healthy this trip and only came down with a snotty nose on the second to last day! What a change from the last three trips we took. The weather ended up turning rainy for the last two days, but the grass was green and the flowers in bloom, so we were able to see a lovely side of Virginia this time.

I promise I wasn't driving while we played together.

Liam was a willing participant in all of his sessions which was such a blessing! When he gets mad he tightens up his body and it's hard to get him to cooperate for therapy when he's stiff as a board. But with these sessions he allowed Carla to work with him and was (for the most part) relaxed and amiable.

I think the most important thing out of our weekend was that I was able to walk away from it with useful tools to help facilitate movement for Liam. The previous sessions we had were last year and he was still so tiny and less cognitively aware. Now that he is older, he was participating more and enjoying it so I was able to relax and absorb it in a way that I didn't before.

Grabbed his own feet!

Carla focused a lot on Liam's upper body. She did a lot of slow, methodical movement that centered on his relationship with his arms in accordance with his back and chest. All of these movements are done in order to retrain or re-map Liam's brain. We are trying to retrain the brain in order to get his muscles to respond instead of traditional therapy where you work the muscles and then hope to get the brain to respond.

The hardest part for me in all of this is that I don't know God's plans for Liam. Clearly we can't see the future so I don't mean "future" in that sense, but I'm referring to his mobility issues, cognitive delays, etc.

I feel like I walk a fine line between wanting to seek out the best for Liam at all costs and wanting to know when to just let go and let God show me what he is going to do. We can't bankrupt the family for therapy that might not even work for Liam. Yet, how do you know if you never try? What is the next step? Is there one?

For now, we will take each day as it comes and I will use what knowledge I gained in Virginia to work with Liam in a way that I hope is productive and positive. I'll throw in some of my regular PT's tips and tricks, some baby yoga and a little fun and try to help Liam get his head up and on top of his body. I am praying for Liam because God said to pray unceasingly. Does He answer our prayers? Absolutely. Does He know what's best? Without a doubt. Do we always get what we want? Nope. But, with God, all things are possible! Nothing is too difficult for Him.

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