Progress 4 years Later

I used a talker today to help me communicate better. I hit a button with my elbow to let my mom know what I wanted. It was really cool. I still need a lot of practice, but I'll get there.

On Wednesday I sat for 30 minutes.

On Friday I crawled.

ENOUGH SAID!

What's Next

Doctors Appt., Doctors Appt., Doctors Appt.!

January and February are usually the families doctor appt months. The only doctor appt. that makes me nervous is Joey's Orthopedic appt. This is the apptt. were they check his hips for dislocation and his back for scoliosis. Well luck was on our side again and his hips are fine and NO scoliosis. Whoo Hoo! However, Joey did have to have botox in his calfs and hamstrings again to help the stretching of these muscles. He was serial casted for 4 weeks. He was also sized for new braces. He just got his other braces last June. That is how much his feet have grown. I was very proud of my husband, he took Joey to this appt. and dealt with the removal of his casts and the sizing of his new braces. He did a great job with Joey that I think I might send him on more dr. appts. Hee Hee Hee NOT!

Ok to slightly change the subject.......................or actually making a long story of my point in this blog..........................

Two years ago Joey's feeding tube was removed. He was eating great and continues to eat great as of today. He was drinking so so, not great but was getting enough. Over the last 6-8 months I have noticed that his drinking has gotten worse. He seems to choke or drown himself (ironic UH!) when drinking. Sometimes you can hear him wheezing when drinking. SO, I made ANOTHER dr. appt. Off to the Gastro doctor we went. I called the dr. requesting that we do a modified swallow study and of course he wanted me to bring Joey into his offices to evaluate him. AND what did he say when I got in there, "So I here you want to do a swallow study? Well lets do a swallow study", so why did I have to spend my time and money to see the doctor when he was just going to call for the swallow study anyways. I know why, but it's still frustrating. Well I am very nervous about this study. If it shows he is aspirating then the feeding tube will have to go back in. I am hoping this is not the case. I plan on doing Vital Stim all summer to help his swallowing. I haven't even made the appt. yet and I already am very nervous with butterflies in my stomach.

Good news did come out of this appt. though. Joey has gained 3lbs and weighs 40lbs now and has grown 4 inches since summer. Nice Joey, thats why my back and knees hurt. Thanks! So with this said, obviously he is getting enough nutrition without the feeding tube.

We also have another appt. this weekend, but not with a doctor. This appt. is with a therapy clinic to get Joey an AAC device (communication device). I am very excited about this appt. This can make a HUGE difference in the way Joey lives his life.

In a couple of weeks we are heading to Arizona for ABM therapy and a little vacation. We are very excited to do this again and pray for some awesome results.

Well that is the going ons here with Joey. Please keep us in your thoughts and prayers that his swallow study goes the right way and that we see changes with the ABM therapy and that we find the right AAC device.

Joey's Quilt

4 Years ago right after Joey's accident I joined the most wonderful support group; Parents of Near Drowns. There are so many wonderful families in this group that have and are going through the same things I'm going through with Joey. One of the members in the group however does not have a near drowning child, but loves our kids so much and wanted to do something for our children to make their lives better. She and a couple women joined together to start Circle of Hope. Circle of Hope makes very special handmade quilts for our kids. Although over time I believe that it is just her making these quilts now. So 4 years ago she put Joey's name down on the quilt list and yesterday in the mail I received his quilt. When she first put Joey's name of the list she asked me what his favorite things are. So the quilt was made especially for Joey.

Thank you Kate for Joey's quilt. It is one of the most amazing gifts ever.

The front of Joey's Quilt. Theme Trucks

Back of Joey's Quilt

I'm Still Figuring It Out.

My Body. I'm still figuring out my body.

4 years ago I found my head control, then found my legs soon after that. Slowly over the years my brain has reconnected to my toes and hips and shoulders and elbows and mouth. Ok well you get my point. My arms just like my eyes have taken the longest, but are slowly finding the new connections. The connection to move my arms have been hard to find. However long the road has been it is finally showing me those connections are reestablishing (kindergarten has taught me these big words, nice UH). When I would try and reach to touch something I had to use my whole body. My whole body would tense up and start to go into extension. Then my arm would barely move. I have been working so hard to just move my arm and reach. Well yesterday I was finally able to do it. I was able to lift my arm up, extend and reach to touch my talking button without going into extension. But the really cool part is that I didn't just lift my arm up like I normal do, I EXTENDED (reached out, for those of you that haven't gone to kindergarten yet) it out and touched the button.

Anyways, my teacher told my mommy this yesterday, but she has a hard time believing it if she doesn't see it herself. So today I decided to show her. She just about cried. Oh moms, they are so sappy. It is really cool to push the button. The teacher records different sayings in it, it is really funny. Makes me laugh out loud each time I hear it. So I plan on working hard to now really get my arms working good. Its hard because I am also trying to get my eyes to work better also. I'm not good at multitasking. My moms great though. Did you know that my mom can feed me, talk on the phone, post on facebook, yell at Jessica, clip Jacks nails and do the laundry all at the same time. She is amazing.

Well that's all for now. I'm tired and need to watch Mickey Mouse club some more before I hit the hay.

LIfe as Usual!

Life like usual has been very busy. The months of January and February are our annual doctor appt. months. Between Joey, Jessica, Jack and I we spend 2x a week at the doctors for these 2 months.

Joey has seen the eye doctor and got glasses to help his central vision. Now we need to get a vision therapist to help some more. Funny thing is Jessica teased Joey about getting glasses and a week later she got some of her own. LOL!

Joey also saw the Orthopedic. His spine is straight and his hips are in place. He will receive botox injections in his hamstrings, calfs and abductors at the end of March. Also his AFO's (ankle and foot braces) were adjusted for a better fit. He saw the Pediatrician and everything is A OK. He has gained a 1lb and grew 2 inches in 6 mos.

Joey has decided to now sit for longer periods of time. He averages about 6 minutes, but has sat for 26 minutes numerous times. We have also been trying to get him to stand on his own. This has been difficult because he has very little control of his upper body. We finally found the Theratogs. This helps stablize his trunk. It is a special suit he wears. It fits like a hug on him. He can stand with no support for only a couple seconds right now. This is how we started with sitting, a couple seconds now and 26 minutes in a year. Joey also began Hippotherapy (horse back riding while doing therapy). He loves this part of the day.

To See or Not to See...............That is the Question?

Instead of comparing our lot with that of those who are more fortunate than we are, we should compare it with the lot of the great majority of our fellow men. It then appears that we are among the privileged. - Helen Keller

I remember as a little girl watching the movie about Helen Keller over and over again. I would walk around the house with my eyes closed. I would stuff cotton balls in my ears as to not be able to hear anything. I would wonder what it would be like to not be able to see or hear or talk, but when I tripped or decided to listen to the TV that was on or speak my mind I DID.

Throughout my life I always wondered what senses not to have would be best as not to effect life to much. Well I have a friend who can't smell, this also hinders her taste buds. This is not so bad. You never really crave anything to eat, can't smell farts, yet doesn't interfere to much in daily life. I know people who are deaf. I also took many sign language classes in college and this to is not a horrible sense to lose. You can still function through life without fully depending on others to help you. Then there is the sense of touch. I can only imagine how this can be dangerous.

AND what about sight?

Well since Joey had his anoxic brain injury 4 years ago I was able to see and learn and understand the importance of all our senses. I always thought that it is not a big deal if he can't see. This however turns out to be the most important sense to have. He could hear but not normal. Through many hours and intense sessions of tomatis Joey's hearing is now normal. Through 1000 of hours of Occupational therapy he regained his sense of touch and feeling. It then took a year to get his sense of taste back to normal. Today he knows what he likes to eat. 4 Years later we are still working on his eyesight. After three doctors and two rounds of Stem Cells Joey has regained his peripheral vision. YES, this is amazing and great, but it is not normal central vision.

........Now everyone stop and just look through your peripheral vision right now. Everything in front of you is blurry and everything in your peripheral is a headache. Well that's how Joey sees. Kind of sucks UH!

On Friday he received a brand new pair of glasses. These glasses are to uncross his eyes so that his brain can learn to focus on things in front of him. The doctor gave me therapy techniques to help him. As soon as I stuck the glasses on him it was a whole new world. His eyes began to look forward and he began to focus on things farther in front of him. His head wasn't always turned to one side or the other to try and see.

I can only pray that in the future he will be able to look at something to tell me he wants it. To be able to laugh at my funny faces, to be able to watch TV and laugh at what he sees on it. To have a favorite toy because of what it looks like. To be able to look at colors and see a plane in the sky and a fish in the water. To be able to move his wheelchair in a direction he wants to go.

So everyday stop and look at the beauty around you. Lock it in your memory. This Joey never had a chance to do. HOWEVER, I promise him and myself that one day he will see it all and see it all like we can see it.

I STOOD IF ONLY FOR A SECOND!

Today Joey did something that I have not seen him do in 4 years. If only for a second, he STOOD ALL BY HIMSELF! A second turns into a minute to several minutes to hours.

We stand Joey everyday. Everyday we fight him to keep his upper body straight. Over the last couple weeks we have been trying different things to give his upper body more control. Then today the therapist puts him in a Ther-a-tog suit. This is like someone giving you a tight hug at all times. It also is suppose to be like having many therapists holding on to him all the time. This suit did it. It gave him the upper body control needed to stand independently.

I posted a video a couple weeks ago of him trying to stand. Scroll back and look at that one and compare it to this one. You rocked Joey.