29 March 2011

Special Tomato

Liam doesn't have a good seating system for the house. We have a Tomato floor sitter that can be used in a dining chair but he doesn't sit in it as well as I'd hoped. His tone is just so low in his trunk and the bum part is too big for his tiny cheekers.

I belong to a facebook group where people can give away or sell their 'special' things. I just happened to be on when a mom listed that she was giving away a Special Tomato mobile chair in Liam's size! She only asked for shipping.  I knew shipping would be high because it's heavy and an odd sized thing to ship. But, I knew that a few hundred dollars to ship a $2000 chair was still a bargain!

The mom got a quote from UPS charging about $275. Still, a bargain, but I wanted to see if I could get it shipped cheaper through uShip. I have used them before and never had any problems.

Imagine my shock when I got a quote from some guy saying he would deliver the chair personally to our door for $24.99! I admit I was stunned and confused at the low price because the next cheapest price I'd been quoted was $230. But Keith emailed me immediately upon placing the offer and explained the low bid. He said he was friends with a family who has a special needs kid and knew that costs were outrageous for the equipment that these kids need and he wanted to do us a favor because we were right along the path he was taking anyway.

Sure enough, Keith was true to his word and delivered the chair in excellent condition with the utmost of care. He even took pictures when he got it loaded on his truck.
We were blessed with a mom giving away the chair and blessed again by someone willing to deliver the chair for such a nominal fee. 
This will be the first time Liam will have a chair to sit in with a tray in the house. He sits in it very well and while he still has head control issues in it, he is able to work harder at the control than in anything else we've used. He tries hard to keep his head up where it belongs (once it falls over he can't lift it back up) which is something he's needed for a long time now. He was tired after sitting in it for only an hour yesterday. Now if we could only get him to keep his arms in front of him instead of out to the side!
My goal is to have Liam sitting in this using his iPad independently by the end of the summer! =)
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25 March 2011

About as goofy as it gets

This video is currently his favorite if you can't tell. =)

For my special moms out there, anyone else have kids that move like this? He is uncontrollable and all over the place and I've never seen anyone like him...

Untitled from Jennifer McIntosh on Vimeo.

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24 March 2011

Don't set your sights too low

I had bought an alphabet app yesterday that after loading and playing with it felt it wasn't going to work for Liam. I felt it would be way too hard for Liam to use. I was disappointed but figured it would be something we could work toward. Each letter has an interactive screen with different skills needed for each one. For example, the B for beach needs to be hit at a small little bucket in the corner of the screen to build a sand castle. The H for hat needs Liam to pick the hat up to see the hamster underneath. The L for light bulb requires pressing and holding the bulb for it to light up. It's a great app but requires a lot of different motions and control that Liam has major difficulties doing.

When Liam's OT showed up yesterday I showed her the app and we sat Liam in front of it. She wanted to see how he would do even though I told her it probably wasn't the best for him. First of all, him liking it was not an issue. Liam was interested from the get go and reached out to activate the apple on the first page. The OT held the iPad and tried to keep Liam away from the corners so he wouldn't accidentally change the page he was working on. He unfortunately did that quite often but with his arm control it was to be expected.

We were thrilled to see him like it, thrilled to see him activating the pages and thrilled to give Liam an outlet to learn. I was just happy to see that it wasn't totally beyond Liam's abilities to use this app!

Fast forward to tpday.

I had to bring the iPad for Liam's private therapies today. I knew they would be excited to see that Liam had one and to see him use it. We had speech first and I was most excited to show it to Becky. She's seen Liam make so much progress in his receptive skills and arm skills.  I started up the alphabet app telling her that it required a bit more out of Liam than what we normally do. I would never have guessed that Liam would operate that app like he'd been doing it for ages. Not only was he doing exactly what he needed to do on each page, he was gently touching the corner to go to the next page. He did beautifully. I couldn't believe it. After just the one time playing it yesterday he had already 'mastered' what needed to be done on each page.

By the time we got to OT, our last stop for the day, I thought I would see if I could get Liam to target specifically the head of the dinosaur for D. I asked him to show Ms Heidi what happens when he touches the dinosaurs head. He perfectly picked his hand up off the belly of the dinosaur and touched the head to make it roar. Heidi's eyes got huge and she said exactly what I was thinking. He understands so much more than he is able to let on! I then stopped his playtime to go and he instantly burst into tears. 

I can't explain how much it means to see Liam cry over wanting something. He is just so easy going and he's so used to his body not working, that life just goes on around him while he watches. But now he has something to do! I am so proud of him. He loves learning and this iPad has put the world at his fingertips!

*The app is called Interactive Alphabet

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23 March 2011

I shouldn't be surprised

But I am!

Liam got an unexpected gift yesterday morning!

Normally Liam only gets medical supplies like boring old g-tubes, bags, and formula. But this? It didn't say where it was from but it sure didn't say Med. Supply on it! This one was special. And just for Liam.

Liam got an iPad!

Although I shouldn't be by now, I still never cease to be amazed at the kindness of the people in our lives! The generosity that we have received from our network of friends through our journey with Liam has been nothing short of marvelous, inspiring, and humbling. They have showed a love for Liam that I can't wrap my  mind around and have made the Lord so much more clear and real and present to me through it all. God has brought amazing people into our lives and shown me more through them than they probably even know. 

How can you ever say thank you enough to the person that has brought something so life changing into your child's hands? 

When I mentioned the other day that I wanted Liam to have an iPad, I never would have guessed that someone would take that to heart and buy one for him. I was hoping to win one somewhere (I have tried!) or win a grant for one (tried that too!). At the minimum I figured we'd scrape enough away here and there over time, hopefully the price would drop, and eventually we'd be able to get him one someday. But I never imagined he'd have one so soon! To know someone spent this amount of money on my little guy just blows me away.

We have been truly blessed by this gift. Honestly. We live in an underfunded area for education, let alone for kids like my son who require so much more than insurance or medicaid will ever cover. When the county you live in doesn't even have switches for your son that you can have at home to work with him, imagine the delight in us being able to provide much more for him through this iPad than a switch ever could.

The first app that I loaded was the one Liam had used with his OT the previous week. It's the one where you press the barn door and it pops open to show the animal inside. I knew Liam liked that one and since I don't know any other apps that would be good for him with his motor control problems I figured we'd start with what we knew worked.

And look at that smile!

 Look at the open hand!

Late that night when it was time for bed, we sat it in front of him to let him play one more time before going to bed.

And look at that smile.

Liam loves it!

Thank you for doing this for him.

Thank you for believing in my little guy. I don't know how to express my gratitude in a tangible enough way that will show you how much I am truly thankful. We are honored to know you and thankful for your example.
You guys are awesome!

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17 March 2011

May the best day of your past be the worst day of your future...

My little Irish laddie did two very remarkable things today!

I was sitting on the floor against my couch holding Liam in my lap. I was messing with my laptop when he started giggling uncontrollably. I looked at him trying to figure out what was so funny. He was looking toward the tv. Then I noticed that I had forgotten to turn off his video from earlier. I had only turned off the sound. He was laughing because the video was showing one of his favorite moments, when a hand and paintbrush make squiggle lines on the screen in the colors of the rainbow.

This was a major moment! We've wondered at his acuity for quite some time. He could SEE it from 8 feet away! And there was no audible cue to give him an idea of where the video was.

The second thing he did today had to do with the same video. I was holding Liam but had him facing away from the tv. The video changed songs and right as it cued the first few bars of the song, Liam started laughing. When I looked at the tv, it was one of his favorite scenes again. This time, he wasn't using his vision, he was using his hearing to know where the video was. He has the music memorized to the scene. 

It gave me chills to see him do that. This kid can't talk or move his body but he has his mind, that's for sure.


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15 March 2011

What I want...

I have been dying to get my hands on an iPad for Liam since I started seeing kids with disabilities using them. There are a lot of videos on youtube of kids with various needs using them for play, learning, and communication. My first thought in getting one was to be able to get Liam to communicate with us through it since he doesn't have a voice of his own.  But after seeing all of the fun apps for kids I knew it would be a great toy for him as well. Because Liam can't hold and manipulate toys on his own, to be able to independently play with an iPad would be a dream for us.

Liam's OT, after seeing how much Liam liked smacking the computer button we have, thought trying an iPad would be a good idea. The only problem was that we don't have one and neither does she. Because she hasn't worked with Liam long enough she is unable to ask the school to get one for him. So she did the next best thing. She asked her husband to get her one. 

I had no idea she had it until she showed up with it this past week! I was so excited to see Liam try it.
We started out with a cute app of a barn that would shake and make an animal sound. When Liam hit the door it would open and show the animal inside and say it's name.  We switched from that one to a game where Liam had to hit a moving fish. Once he hit the fish it would say the color of the fish and flash the name on the screen. We then decided to switch to another app. But as soon as we switched it Liam burst into tears and started whining. Our OT had never seen him do that and asked me what was wrong. I said I think he wants to play with the fish!  We switched back to the app of the fish and he immediately stopped crying and started smacking on the screen again. I couldn't believe it! He was enjoying it so much he actually complained which he hardly ever does.

He also passed a goal which was to keep his hands in midline for play for over 30 seconds. He used both hands, together!
  *I know that is a very small amount of time but as you can see, since it is a written goal, it is something that is very hard for Liam to do.

It was such a moment for me because I knew it proved to me and his OT that it was something that Liam needs and it was something Liam would benefit from having. There are so many things that having an ipad will do for Liam. Not only will it help him with gross motor (hand swiping, placement, dragging) but it will help with cognitive development, vision, and communication!

iPads are truly changing the life of disabled children everywhere. Even MIT has engineers working on apps specifically for kids with disabilities. I feel very fortunate that we live in the age we do now that makes learning such a more accessible experience for Liam.

Now we just have to get him that iPad!

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10 March 2011

A cheap souvenir

We went to visit Shawn while he was in DC for work and ended up at the air and space museum one afternoon. Aidan collects pins for every trip she goes on and we were looking through the gift shop at closing time trying to track one down. As I was hurrying through the check out lane I noticed they had space blankets! For only 6 bucks! I had been wanting to get one for Liam after a friend recommended one for Liam but it had slipped my mind and I just never did.

I had to get it for Liam as soon as I saw it. He didn't come with us on the trip and I wanted to bring him back a little souvenir but I didn't think I'd get to bring back such an awesome one!

And awesome it is! He LOVES it. He loves to lay on it, in it, beside it, and under it. He loves to kick and giggle and smack it with his hands. When I ask him if he wants to play with his crinkle blanket he just grins so big.

It's a great sensory experience. It's very shiny and bright and it makes a ridiculous amount of noise when he plays with it. What's so great about it for Liam is that he doesn't have to manipulate anything and no one has to help him play with it. He can freely entertain himself and have a ball doing it. 

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09 March 2011

Hope with hbot

This is a long video, but worth your time if you have kids with special needs.  Doctors won't even know about this treatment or will be against it if they do. Two of the three pediatricians we have seen were against it and two out of our two neurologists were against it. But I know that Liam wouldn't be doing as good as he is today if it weren't for hbot. Even his therapists agree. We've only done 80 dives so far but need to do far more. It's why we raise money for it. It's expensive and insurance won't pay for it and medicaid won't help. Even though it's helping kids get better.

This video is a testament to hyperbaric oxygen treatments and how they saved the life of this little girl who was supposed to die at 2. It's a mom who never gave up hope and wouldn't take no for an answer. This is what we take Liam to do.

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08 March 2011


I feel like a horrible mother. March 3rd came and went with not so much as a fleeting wisp of thought concerning my daughter.

Kyle Ann's birthday was last week and I didn't even notice the date. Somehow it just hit me this morning that I had missed it. I had completely forgot.

She would be four now. She would be running around wearing princess dresses and high heeled shoes that are too big for her little feet. She'd have bows in her hair long, straight brown hair and she'd giggle at the affections of her older siblings.  Or would she be running around in cowboy boots fighting off the bad guys with a light saber? Would she be spunky and outgoing like Aidan or would she have been shy and soft spoken like Rylie? Would she have idolized her only big brother?

I don't know. And it hurts to not have been given that opportunity.  I always wonder what's harder, losing a child you had memories with or one that you didn't get to make any with at all.

But I do take great solace in knowing that I will see her again someday.

If you haven't heard of the books Heaven is for Real or The Boy Who Came Back From Heaven, I highly encourage you to read them. They are very quick reads but are amazing reflections on what has been told to us thousands of years ago in the Bible.

One of the points that really stood out to me was in Heaven is for Real. The little boy in this story travels to heaven when he was very sick and months later mentions a small bit of information about his journey as he passes by the hospital. When details finally fully emerge, the family realizes that their son knew things that were impossible for him to know because he was under heavy sedation at the time. And he tells the mom he got to meet his sister while he was there during his surgery. "What sister?" the moms asks him. "The one who died in your tummy." he says.  This little boy had never been told about his mother's miscarriage. Ever. He had no earthly knowledge of it, but he came back from heaven having met her.

There are so many details in these two stories that are just chilling. Rare present day glimpses of God allowing heaven to be seen. I was reminded that I will see my Kyle Ann and Brady again. And that they will know me and the rest of their family when we get there.

I'm sorry I forgot your birthday sweet girl. I miss you Kyle Ann. Some day we'll get to celebrate the day together.

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03 March 2011

Continuity of care

When we were finally given approval for medicaid for Liam, it came with a caveat. We had to have an aid.

It has turned into such a pain in the hiney.

We started having regular aid service recently after a few month lull and after a so-so aid,we got a very personable, funny, loving woman. She was great. I even left Liam with her after knowing her just a short time because she was just that good with Liam.

But, she had to miss two visits this week and they sent a different aid in. Each time. So two more new people to meet Liam, get a quick summary and then leave. Liam only requires a nursing aid two hours a day 3 times a week so by the time a new person gets in here, gets the hang of things, it's already time to go.

The nursing office called this morning to let me know that yet another aid would be coming next week and would be Liam's permanent aid. Four different aids in a one week span. I asked her what happened to Liam's permanent aid he just had. She had no idea. She said she was from a different office and was just at this location for today. She was sorry she couldn't be of more help.

Kids like continuity. People like continuity. It's the reason why when children are in the hospital you get the same staff day after day. It forms familiarity, comfort, and ease. And not just with the child but with the parents as well.  When we were in the NICU we were told we would get the same nurses every time. Because they knew my child, knew us and were able to put us at ease when we had to leave him there. Home nursing is no different. I'm allowing some stranger to come into my home and care for my child on my behalf. I don't know this person's background, their skill, their level of maturity with disabled children and yet I am supposed to just allow them in to help me with my child so we can have medicaid.

I don't know if the nursing agencies are aware of the problems that parents are experiencing. This is our second agency with the same results: Continual rotating of nurses in and out until they find one that will fit, not when we find one that fits; No notification when a new aid comes in, they just show up at the door; Abruptly stopping our aid services with one that we get along with really well.

It's just very frustrating to say the least.

I wish NC would get on board like other states and allow the parents to pick their own aids. If the state has to pay a nurse to take care of Liam for me several hours a week (when Liam doesn't even need a nurse, he just needs an aid), why can't I get to pick who comes into my home? Why can't it be one of our choosing?

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02 March 2011


In 1987 Reagan signed proclamation 5613 which established National Disabilities Awareness Month in March. Later on the senate passed a resolution stating March 25th* as National Cerebral Palsy Day.

I am absolutely positive that most of you don't know that this is a day/month to be aware of anything. Everyone knows October is Breast Cancer Awareness Month. But March is for disabilities? Who knew? I know I never did. And I have an aunt with cerebral palsy!

So what does it mean to me now that I have a child with disabilities and cerebral palsy? My answer might surprise you.

It doesn't mean a whole lot.

I can hear the sucking intake of breath already. Uuuuuuuhhhhh. Can she be serious?

I don't mean that the day isn't significant at all. What I mean is that it just doesn't mean much to me to celebrate awareness on only the one day of the year. We live this life of disabilities everyday. It's not just one day of the year for us. I don't want just one day of my year to be set aside to honor those who are disabled by CP. If I had my wish everyday would be a day where green ribbons are worn and people raise awareness of this issue. I want to live my life with Liam raising awareness to everyone at all times. It's why when I have been questioned about Liam having Down's Syndrome that I have gotten so upset. It's why when given the chance to have an open dialogue I will proudly say that my son has cerebral palsy (it's not his fault). One day a year isn't enough to teach the world about CP. One day of ribbons and wearing green doesn't say enough about what this disorder does. We live with CP every second of every day and I would wish that I could make awareness a regular routine for Liam and the other 10,000 babies born every year that have cerebral palsy.

The statistics are staggering yet so many people have no idea what cerebral palsy is. When people look at Liam they think of a more popularized genetic disorder of Down's Syndrome (and it still baffles me that he gets confused with this syndrome). I assume people's familiarity with it is because women have been told for decades how at risk they are of having a child with this chromosomal abnormality if they try to conceive after 35. As a pregnant woman you are checked against this disorder through blood tests and ultrasounds. Women even abort their child if they show the markers of having this genetic disorder. They can receive counseling and brochures about it. But CP? No one can check for that. No one can diagnose this in the womb. No one gives you a brochure. No one ever sees this one coming. And public awareness is not made for it. You can't prevent it. It just happens.

But I am in a fight for Liam. 

  • I want to see a cure in Liam's lifetime. 
  • I want treatments and therapies to begin earlier than what my son was able to receive.
  • I want to see everyone know what CP is.
  • I want people to know that CP isn't the same for everyone who has it. It's a term that can mean a lot of different things but that for the most part it is a neurological condition that causes movement problems which can vary greatly in and of itself. 
  • I want people to ask me honest questions when they see us such as 'Can your son do this or that?" not hurtful questions like 'What's wrong with your son?'
  • I want people to know that CP is something we live with everyday and that disabilities in this world are a natural part of life. 
And I want that awareness to happen everyday of the year. Not just on March 3rd. Or 20th. Or whatever day it really is for this year.


*Somehow that date changes every year...not sure why as this year I'm told it's either March 20th or March 3rd which is very weird to have two very different dates. And with google you'd think I'd have been able to figure out why but I haven't yet.

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01 March 2011

A & B & sometimes CDEF & G

I was originally intent on going to the Dominican Republic for a stem cell treatment (due to costs and benefits) but I feel so far that we are being led away from that location for some reason and Mexico is where we are to go. I never cease to be amazed at how God will move me through A and B to get me to C, which is where I thought I was going, and then he diverts me to D and sometimes E and then F.

I have spoken with the Dr's in both locations and while there are pros and cons to both, it looks like Mexico is leading the way for what Liam needs done. The DR would prefer to do adipose stem cells (taken from Liam's belly fat) but will eventually take the stem cells from the hip if need be. Liam is too skinny right now to use adipose cells so we would have to wait to fatten him up, which could take forever, if at all. You don't ever see people with CP have extra fat. Liam already has weight issues and he moves a lot so he stays skinny. And DR would transfer the cells back to his body through an IV in his arm.

Mexico would harvest the cells from his hip. But they also go a few steps farther than DR. They will do an MRI, evaluations, cell counts, cytometries, viral panel, and a medication for subcutaneous growth colony stimulation. They then transfer the stem cells back to Liam but they do it intrathecally (through the spinal cavity). It just seems like a better choice for us now at this point since doing it intrathecally gives the cells the optimum chance of targeting injured areas of the brain since it's already in the blood brain barrier at that point.

Mexico is ready for us whenever we are so, now we just need the money to go! We have sold a few shirts and some flowers. =) And we've had several straight up donations.  The chipin wedge on the right only shows what has been put in through that chipin wedge. Liam's had a few donations through his facebook page Limitless {Team Liam} that bring his total to around $400 so far! So, a big thank you to those of you who have passed his page on and encouraged your friends to pass it on. I've had donations from complete strangers. And even the smallest bit helps.

It's nerve wracking for me to watch and wait on this happening for Liam. As his mom, I want to just set the date and go get this done for him. But I can't. So it makes me nervous to have to wait and hope on the generousness of others. It's humbling to say the least! I feel like the guy on the street corner with the sign asking for a handout. You know you have to be desperate to do that. And I would if I had to. Hey, maybe that's not a bad idea...take Liam with me, tape a sign to his wheelchair...  I'm hoping I don't have to go that far though. =) We have had his PT and a few friends take flower brochures in the hopes that they too can help get folks to pitch in a little bit and get this ball rolling.

But for now, we wait! And then wait some more. And see if God has us going to G next.

Look at how anxious he is. See how he fell asleep praying over it all?

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