29 December 2012

Happy Holidays

We hope your Christmas was jolly.

And bright!


And you were able to spend it with the ones you love.


We hope you were able to be goofy (we walked around downtown in our onsies).



And you got something you really wanted.


But most importantly we hope you know about the little babe who came so long ago, so we could learn how to truly live, giving us the real reason that we celebrated this Christmas season.



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16 December 2012

We don't speak in nouns.

Liam had an aug. com. (augmentative communication) eye gaze trial last month. I was interested in it as the future means for helping Liam communicate but did not go in with the assumption this device was going to be the one for us.  We spent an hour with the better part of it simply communicating to the speech pathologist what Liam can and can't do through his cerebral palsy, what he can and can't see from his vision impairment, and what he does and doesn't know (presumably) language wise.

The speech path. determined that Liam isn't ready for a device right now at all. She felt Liam needed to know more verbs and not just all nouns. She said we don't talk in nouns, we use verbs, so he needs to know more verbs. We needed to make some sort of frame with words or pictures for the verbs and teach them to him. I left mulling over what she said and knew our speech teacher would be able to help us implement the plan the speech path. was talking about so we could get him ready for communicating through a device.

After getting home and thinking even more, my ruminations brought me to a couple of conclusions.
  1. She's right! We don't speak in nouns we speak with verbs. So, just by speaking to Liam like we already do, he knows verbs! Duh. He specifically knows many, many verbs: brush, fast, slow, jump, go, push, touch, put, sit, roll, where, etc. and etc. just to name a few.
  2. This speech path. spent 45 min with Liam. You can't get to know him in 45 min. and assume he isn't ready for a speech device when only a few of those minutes was spent trying to get him to use one.
  3. Our speech teacher would be able to get us going with data to show that Liam actually is ready for a device at this time.
The next week when I received my reminder call for his therapies they told me that Liam's speech teacher had quit. It was honestly one of the most shocking things I've ever heard. I was absolutely dumbfounded. I literally could not speak on the phone.

As anyone who works in therapy knows, you build a relationship with your clients and vice versa. We had been working with Ms B. for 2 years. Liam knew her very well and she knew him well.  Liam would respond to her. She could read him. And all of that work was gone, with out so much as a goodbye, it's been fun working with ya.

I really feel we wasted our time at the aug. com. trial because the teacher involved with the appointment who was to help us go forward getting Liam ready for a device by implementing the speech paths. plan is now gone. We have to start over from scratch.

I took a couple of weeks off from therapy there. I was disgusted that a woman we worked so closely with didn't even say goodbye. I thought very highly of her and was told that she must have forgotten to tell me. I didn't buy that. Our very last time working with her and she says nothing to us when we leave? That doesn't make sense. I've since found out she didn't tell other parents as well. I'm hoping she hears how upset we all were and learns that parents need to be told in advance. And that you properly say goodbye to your clients.

We started back in therapy two weeks ago with the new speech teacher. I told her on our first session that I was not trying to be short and nasty with her but that I really had a hard time with how things had gone and was so disappointed with it all and I just couldn't keep that all from showing. She said she understood and on her behalf, she is trying to help us get on the road to a speech device. It's just going to take longer for her to get us there because she doesn't know Liam. His school speech teacher has been working with him for 4 months now and she still feels like a novice with him. So, it's going to take some time, but I know we'll eventually get there.

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28 November 2012

It's been 5 years.





I wrote this late last night and forgot to publish it. At 3:30 this morning Liam started cracking up, laughing and kicking in his bed. I rolled over, laughed myself at his special night time visit just for his birthday and went back to sleep. Somehow, while Liam was having such a good time, he managed to get onto the floor. He has not been able to get out of his bed since we moved him to a toddler bed with a rail and keep a pool noodle underneath the sheet as a barrier. Both are still in tact this morning yet Liam was found sound asleep down on the floor. =)


Separated for now, but twins always and forever...happy birthday my sweet baby boys! Brady, I know Liam talks to you  in the wee hours of the morning when the room is dark and quiet and everyone is asleep. I love how he giggles and he gets so excited, it's a different kind of laughter than what we normally hear around here from him. He only does it in the early morning hours when no one is looking. Does he see Kyle Ann too? I know you are playing with her and getting to spend your birthday with Jesus. I'm so happy for you guys! Even though we miss you so much and some times things are tough, I can't wish you back because you're in such an amazing place!

We'll see you someday though and I can wish you happy birthday in person then. For now, we will just have to celebrate twice as hard here and now with Liam.


Brady, while your body is whole and you can dance, and play and sing, Liam's is not quite there yet. It makes things tough on us at times so when you see Jesus, put in a good word for your brother about some healing needed down here! We keep up our prayers and can't wait to see what He's going to do still!




 Liam, you have changed our world! The love you've brought to this family has us ridiculously blessed. Who could have known that watching you learn the simplest of things could bring so much joy. Nothing you do is ever taken for granted. Your endless supply of smiles and your goofy giggles light up even the darkest days. These 5 years have been really hard but so worth it. You've made your momma and daddy better people just by being here. You've taught your siblings and us compassion, empathy, sympathy, and appreciation. You've taught us joy in the moments and that being disabled isn't the worst thing that can happen to you. Being different is how God planned for you to be! You may not work like the rest of us but you are still made in God's perfect image. He's got our backs through all of this and everything has been on purpose. And someday, you will be better!


Thank you, my boys, for the joy you have given me these last five years. May your birthday be a celebration of the happiness you are in our lives and an appreciation of the gift that God has given us in you.




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13 November 2012

Halloween-n-dreams

I wish I could plan something in our community for the special needs kids at Halloween. This holiday can be the toughest of them all for our children. There are numerous issues that can impact a special child's ability to enjoy this day:
  • sensory issues (not able to wear a costume)
  • non-verbal (can't say trick-or-treat or say it well)
  • motor planning issues (can't get their hand into a bowl)
  • fine motor skills (can't pick up the piece of candy)
  • wheelchair bound (can't even go door to door to participate)
  • vision impairment (self explanatory)
Just one of these things can seriously impact a child's enjoyment of this holiday let alone having more than one thing on that list (which is by no means exhaustive).

Liam has several of the issues on that list that prevent him from enjoying Halloween. We try to make the best of it, but there is not a neighborhood anywhere around where he can go from door to door in his wheelchair and participate in trick-or-treating (narrow paths, steps, uneven walkways, etc. not to mention Halloween decor that he will grab and take with him). And everything is so dark he can't see what's going on very well either.

If I were able to plan a Halloween for our kids I would love to have trick-or-treating take place in the mall. It's bright, open, wheelchair accessible, and could give many special needs kids a safe place to trick-or-treat. There could be numerous ways in which to give kids a chance to go 'door to door' inside a mall (have booths set up, tables, refrigerator boxes for houses, etc) and let them experience Halloween in an environment better suited to their needs. How cool would that be for them...

We took Liam to our church's fall festival this year instead of going with his older siblings trick-or-treating. He wasn't having much fun though and had been coughing, getting progressively worse as the evening progressed. By 7:15 he was conked out and running a fever. So much for showing him how much fun Halloween can be by getting gobs of candy and sharing it with his mom...

He's the Doctor.


Doctor Who?

A witch, the 11th Doctor, the Tardis, zombie, & a hobbit.

The Doctor is out.
Special needs kids truly have unique, different needs that can be misunderstood and overlooked. In the midst of the chaos of trick or treaters, costumes, and candy, are a large minority of kids who just want to participate but can't.
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06 November 2012

God's a nudger

God has a way of getting you where he wants you, no matter how long it takes. He is patient. Oh, so very patient. And he will place every opportunity in your path that is necessary to get you to see what needs to be seen. We just choose to look away. We choose to not see. For fear. For pain. For anger. For Rejection and so many other reasons.

I am not a leader. I do good in second command but leading is not my forte. So when I was asked a couple of years ago to lead a support group of moms with special needs kids I immediately said no.

My heart just wouldn't be in it. It's not me. It's not for me. It's not my thing. Nosireebob. I can't do that.

I didn't even think about leading a group again until this past summer. The thought managed to creep in to my mind. It seeped into my heart. It gnawed at me but I pushed it away. It's not my thing. I was questioning where on Earth this idea was coming from, so out of the blue like that, while I should have known the thought wasn't coming from Earth at all. It was being written in my heart from the Heavens.

I truly pondered the crazy idea of leading a support group.  I rationalized myself out of it though. I am not a leader. I don't want to be in charge. I don't pray well out loud. I stumble over my words. I talk too fast. I talk too much. I don't know enough scripture. My heart is still healing how can I lead a group. And on and on I went getting the idea to disappear.

And then in October I was talking to a friend when I heard the idea creep in again. This crazy idea was even stronger than before. And before I talked myself out of it, while I still felt a strong link to it, I shot off an email to one of our pastors asking if they even liked the idea. I asked if they could give us a place to meet. I asked if they would come along side and support such a ministry if one existed. I asked what they thought of it all the while not committing to leading it. Never thinking I should lead. Just wondering if it was something they would be interested in having at our church.

While I waited to hear back from the pastor about his thoughts, I received immediate confirmation that I was doing what God had desired from me for sometime. He was patiently waiting on me to be ready. And when I started to test out whether this was really something the Lord was leading me to do, he confirmed it. How so? Minutes after shooting off the email to the pastor, an email arrived in my inbox. It was from the woman who had asked me two years earlier to lead a support group. She sent me a message asking me again because she said there is such a need here for it and she thought I should do it.

 Imagine the coincidence: I don't talk to this woman often and have not talked to her about leading a support group in years. And she just so happens to send me an email asking me if I would lead one while I just so happened to be waiting on a reply to an email I had sent minutes earlier asking our church about starting a group.

I do not believe in those kinds of coincidences.

I believe my very patient God waited on me until I was ready to entertain the idea. And when I finally entertained the idea, testing to see if God was serious about using someone like me, he gently said yes. He has showed me that I didn't need to be ready, I just need to trust him.

God doesn't always call the qualified. He qualifies the called. That's what I'm banking on. 'Cause I'm just a girl from the Ozarks who's never been a leader.



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24 October 2012

Stem cell gel

Scientists here in the US have developed a gel that when used on brain injuries helps stem cells to grow and heal the injury.

In South Carolina, they studied rats with brain injuries and found that when the gel was used the rats showed significant recovery.

They expect it to be ready for human testing in three years.

How cool is that?!






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12 October 2012

Murphy's Law says it all

On my way to Ireland last year, the woman at the airline counter loved our families names. We got to talking about Irish names and meanings as she had named her children with Gaelic names as well. When I mentioned that my daughter had the name Aidan we got into a discussion about how she chose not to name her daughter Aidan when she found out what it meant even though she loved the name. She asked me if my Aidan had grown into her name and by God, she has. She is as fiery as her name means.

Liam's middle name is Murphy. He wasn't named after Murphy's law. But it sure does seem that he's grown into that at times.

This past week I took Liam with me to church to hear Steve Brown speak. I normally don't do these things if there is no one to watch Liam because I fear him vomiting in the service. And since he's not a little boy any more it's messy, embarrassing, and gross to do that in front of people. So, I normally would leave Liam at home. But Shawn was out of town and I wanted to go.

Liam was enjoying the video clips, laughing and having a great time. He was really happy and I was thinking we had escaped any embarrassing moments.

Three quarters of the way through the service, when Steve Brown started taking questions from the audience so it was extremely quiet, Liam gagged and started to throw up. I jumped up, shoved a cloth under his chin, and raced out the door. On the long walk to the bathroom he threw up all over himself. I get in the bathroom and start to clean him up and he throws up again. I literally take Liam and his seat out of the stroller, throw it up on the counter, and position Liam so he can vomit into the sink with the water running.

It was quite a site. Thank God it was not a normal service and there weren't people coming and going out of the bathroom because it was bizarre looking. I am sure it looked like I was torturing him keeping him strapped in a seat, sideways on a counter, holding his head up so he could throw up. I felt so bad for Liam.

When he finished vomiting I strapped him to the changing table so I could clean up his stroller and the sink because it was a mess. This was one time I was thankful he is on a liquid diet because I had to unclog the sink.

I get to Liam and pull off his smelly clothes. I also change his diaper and as I am leaning down to grab a diaper out of the bag, he pees all over the place. The only clean clothes he had on were his socks and they are now covered in pee. The plastic changing table has a large puddle of pee under his back. I am completely out of wipes at this point so I grab wet paper towels and clean him up, dress him and put him back in the stroller... where he starts crying.

I thoroughly clean the sink, the counter, the changing table, and the floor of the bathroom. All while Liam is crying in the stroller.

I ask Aidan if the service is done because I just want to escape to the car with no one seeing me. She said they were finished and everybody was hanging out in the lobby. Lovely.

Liam is still crying.

I head down the elevator, with my stroller full of towels and clothes covered in vomit and pee, and try to encounter as few people as possible getting out of the church.

I grab all my kids and head to the truck.

Liam is still crying.

As I open his door to put him in the truck he vomits again all over his freshly changed clothes.

I strip him down and pop him into his seat sans clothes and head home.


Seriously.



04 October 2012

Rejection

It was a timely topic this past Sunday at church. I had just been talking with a friend about rejection and some of the emotions that come with it, how they can still surface so many years later as if it had just happened. Everyone has been rejected at some point and I could relate all too well with our Sunday sermon topic.

A few years back I had a prayer dinner for Liam before heading off on one of our 3 week long trips for oxygen treatments. I invited only a few couples and kept it close and intimate on purpose. These were people we were close to, felt comfortable sharing intimate prayers with and knew they cared about and loved Liam like we did.

However, before the evening was over, one of the couples left. Something happened that made them feel the need to leave our home right away. They didn't explain why they were leaving. They just said they needed to go and left. I was confused, worried, and at a loss as to what was going on. They didn't even stick around to pray with us over Liam. I was so hurt. I had called them friends and they had left us. I have not had a relationship with them since. Nor have I ever been given an explanation why. They just disappeared.

I was reminded Sunday that we are never to allow our significance to be placed in the hands of men. We should never expect to get our validation from others. Jesus suffered the ultimate rejection. He knew the pain of rejection from close friends. He was betrayed. All of his disciples left him. Peter cursingly denied him.

It brings comfort to know that Jesus felt the same things we feel. He was rejected too. He understands.

But he experienced the greatest of all rejections. He was rejected over and over. He was spit on. He was hit. He was flogged. He was stabbed. He was mocked. He was crucified.

Thinking over this Sunday's sermon I was reminded God has placed every circumstance in my life to mold me and shape me into the character he wants me to have. His perfect plan allowed for the rejection I experienced in that friendship. Not to define me but to refine me.


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29 September 2012

Vacation- happy to get away




As anyone with a special needs kid knows, traveling is usually non existent or limited to rare times. It's difficult to say the least and at best it's a carnival side show fitting everything you need into your vehicle for your special one let alone the rest of the family members and their stuff. I almost love coming home because there is less stuff to pack into the truck! You also can quickly get off schedule while on vacation, can experience an exacerbation of your kids special problems, and you have to learn to be very flexible.

We have some amazing friends. Truly. God has blessed us with a couple who loves us for us, doesn't judge, and not only doesn't think twice about including us but they will go out of their way to love on us, especially Liam.
Liam was not happy.

We were fortunate enough to be able to carve out some precious days from our collective crazy schedules and head to the Smoky Mountains with them to stay in a cabin with a 180 degree view of the Smoky's.

Gorgeous view of the valley every morning from the cabin porch.

 What a great time we had! It was so good to get away.


 
We love to go hiking and Liam has gotten too big to be able to carry and hike like we used too. We did manage to use a Mobi Wrap for a little while and we were able to actually take his jogging stroller through some pretty rough terrain as well so it all ended up working out okay.

Liam actually really enjoyed our attempt at using the Mobi! Please don't follow the wrapping method pictured here. We know that's not how it's supposed to look.



New sport: Extreme Strolling

When we couldn't get the stroller through we would carry it over.  Liam loved that and would giggle like crazy every time.

The big kids are so good at helping out.





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The whole goofy family.

Enjoying our gorgeous views.

Liam threw up more than usual and his feeding schedule got off, but who cares? We had a blast. What's a little puke when you get to have such a great time with great friends?

Liam actually ended up doing really well on the car trips too considering it was about 8 hours each way. And we drove the Cherohala Skyway and the Blue Ridge Parkway for extended lengths of time. This was the longest trip we've ever taken him on and he didn't fuss at all.

He is so good natured and such a trooper. We have been truly blessed.

28 September 2012

Hebrews 11:1

When you think about the human body, it is in the worst state ever as a collective than in all of time before. When God created us it was 'very good'. And then we screwed it all up cuz we humans are just so darn good at messing up. Disease, disorders, death. They all play a crucial role in our lives today and our DNA is so messed up this many years out from the fall that you can see the second law of thermodynamics in action. Order to disorder.

I am thrilled to see so much work being done on adult stem cells. Our fractured, finite bodies can't live like they used to, like they were originally meant to. Adult stem cells are turning the tide on how diseases and disorders are being treated and giving people and families hope.

My daughters unedited photo from the top of a mountain.

It is never too late to hope. And I will continue to hope for Liam that there will be healing for him through using his own stem cells.

This article in medical news today shows that a new procedure is available. It shows success in getting stem cells to the injuries in the brain with out direct injection into the brain (think of the Xcell Center in Germany who had a patient die this way then subsequently got shut down).

The place we want to go to in the Dominican Republic is doing this for select patients already. I don't know that Liam will qualify for it right now, but it gives me hope for Liam and kids like him; someday children will not have to suffer so tragically from the effects of TBI and CP.


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19 September 2012

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.

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29 August 2012

A first for stem cells in the USA

I know I post about stem cells a lot. But I believe it's the future of health care. The FDA is going to try to regulate it and see how they can make money on it, but eventually it will be standard practice for a lot of disorders and diseases.

This study in Sacramento is the first of it's kind.

I hope this study will open the doors for kids on the spectrum. It also includes some info on using the stem cells for treatment of cerebral palsy and how the two disorders, while different, overlap.

Someday!!
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24 August 2012

Normal blood cells to emryonic cells

A new article is out about how science is turning the issue of embryonic stem cells, from embryos, obsolete.

The are taking red blood cells from the patient and turning them into embryonic cells that can then be turned into any kind of cell.

Someday...
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16 August 2012

Summer antics

I swear I don't know where the time goes. Seems like I never get around to posting anymore. As usual the summer is chaotic, unplanned, and going by way too fast.

This is just a bit of what we've been doing.

video
He's goofball.


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29 July 2012

Still -13*

Some people say I am too sensitive. I might be. I know having a kiddo with issues has made me a whole lot more sensitive to a whole lot of different things.

I think it's a good thing.

If not used properly I suppose being sensitive could keep me from putting on my big girl pants and facing the world. Or it could have me getting defensive at every little thing thinking that somehow things are personal.

This past week Liam had his yearly eye exam at Duke. I'm not sure the position/title of the first person we see when we go but we always see someone in training who does some tests and records it all in his chart. This time the lady put up a large Minnie Mouse toy that spun around and lit up. She moved it left, right, up and down seeing if Liam would track it. He did it all but the going up. He doesn't visually move his eyes up.

Then she asked me if he would reach out and touch Minnie.  I told her that yes he would, but that I would have to tell him to do it (he just doesn't do it on his own because of how much work it takes).

She then put Minnie in front of him and I asked him to touch Minnie. As he started to move his arms she put Minnie back on the counter and started to write in his chart. For about a half a second I was flabbergasted and then went into advocate mode. I told her that he has CP and you have to give him time. He can't just reach out and grab something the moment we ask. He has to think about it, then think about what arm to use, how far he needs to reach, and then he has to think about activating the right muscles. It's a complex process for him and you have to give him time! 

I took Minnie off the counter and put it back in front of Liam who was still trying to bring his arms into place. He looked at Minnie and smiled and slowly got his hand onto her as the lady exclaims, "Oh, look at him go for it!".

Arghhhhhh.

After that she said they had to dilate his eyes.

And then she asked me, "Should I just put the drops in his eyes or do you want me to tell him what I am doing?"

Seriously? You have to ask me that?

I. was. perturbed.

Of course you tell him what you are doing!! He is a human being! He can hear. He can see. And he can certainly feel your hand prying his eye lids apart. Why on earth wouldn't you tell him what you are going to do to him??

I told her so with out so many exclamation marks.

This is a pediatric ophthalmology department. You assume that all patients understand what you are doing and saying and you treat every patient the same: with respect, kindness and patience...just like you would want to be treated.

If she didn't know that before. I hope she understands that now.


*That is Liam's needed correction for his near sightedness. It's unchanged from last year.


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24 July 2012

Just keep swimming...

Gah. Liam is getting so big! He finally outgrew his infant (up to 30 lb) life vest that we used for pool play time. His awesome first PT bought it for him so he could enjoy the water. We've been squishing his body into it for the last two summers but this year his head just got too big for it and it just wasn't going to work anymore.

They don't make life vests with neck collars in larger kid sizes that you can buy at Wal-Mart. We have to head into the realm of special adaptive equipment now.

I looked all over the internet googling terms like crazy. I did find a company in Canada that makes an awesome life vest for disabled kids and adults that mimics the infant vests. I was hoping to get that one for Liam until I got the price quote. Almost $300. =(

Most of the neck collars were in the $100 range and I really wanted more support for him. But then a mom mentioned this Kiefer one and it only cost $30!  That's unheard of in special kid stuff. Nothing is ever cheap for our guys and with that price I couldn't go wrong.

This one works great too! You can't go far away from Liam because this isn't a life saving device. Liam will get so excited in the water that he starts splashing water all over himself and floods his chin area. Or he will get so excited that his tiny chin pops through the hole for his neck. So, you need to be close by and keep your eyes on him.

But it is a wonderfully cheap way for Liam to get in the water, get silly, and feel just like a 'typical' kid!


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18 July 2012

Glimpse of the past

I ran across this book today while sorting out my book shelf. Every single line in it is filled. Filled with numbers and times.

It's a journal recording every cc of milk Liam took in in his early days. Not every ounce. But every cc*.  

I would write down every drop he took, keeping track of the calories and the volume.

We originally started out with 300 cc's a day. Sometimes not even that. That would be just a measly 10 ounces of food he was getting on those 'good' days. That was it.

As I flip through the book we gradually get higher. On a good day we could get 500 cc's in (not counting how much came out with all of the vomiting he used to do back then). But for the most part Liam hovered around 350 and 400 cc's.

Looking back on this book I'm reminded of how far we've come.

I was so against the g-tube for so long. And we all did a great job preventing Liam from getting it at a very young age. We delayed the inevitable for as long as we thought we could. But we felt like we were giving up when we finally did break down and get it. We felt like we were failing Liam by giving in.

Seeing this book today reminds me of how hard it was, for all of us, in the beginning.

And it reminds me to be thankful that that chapter is done and gone.

     *There are 30 cc's to an ounce.

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05 July 2012

Happy Fourth!

How Liam spent the day:
Giggling whenever his sister would blow bubbles underneath him.

Giggling in anticipation of his sister blowing bubbles underneath him.

Just relaxing.

and soaking.

The official lazy days of summer have hit this household.


We ended the night with Liam exhausted from the pool and asleep before 8.

Ian had some friends over and we celebrated by shooting off our own fireworks.


I hope your Independence day was grand!


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