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.

Orthopedic Appt.

With all of the doctors I take Joey to, the orthopedic makes me the most nervous and anxious. One of the things when it comes to Joey's body we have to watch out for are his hips dislocating and scoliosis. These two are the most common problems physically when it comes to kids with brain injury.

There are some therapies that will help prevent these issues from occurring. Weight baring on his legs, stretching his legs and hips and laying on his tummy. I try to do these all day with him. I have become very cautious with how his body is positioned.

So as I am driving down to the appt., I begin to freak out. I think 'what if this happens', 'what if that happens', 'what if, what if'. During his appt. I lay him on the xray table as I try to sneak a peek of the xrays (like I can really read them). Then back to the room to wait and wait and wait. It seems like forever, but has been only about 10 minutes. Doctor walks in really fast and says........................................"It's all ok, no scoliosis and his hips are perfect." Then she walks out. So all my nervousness and he is fine. I feel like a weight has been lifted off my shoulders.

Doctor likes what she sees. His calf's have stretched out nicely from the botox back in May. In March we are going to Botox his calfs again to prevent them from getting tight again. We are also going to botox his hamstrings and abductors. He will get a brace to wear at night to stretch his abductors while the botox is in effect.

I can't tell you how relieved I am. No more worries until next year.

Conquering the Beast.

Today Joey had his annual Neurology appt. The doctors asks many questions, one of which "has Joey regressed in anyway"? My answer was, "WELLLLLLLLLLL, his ATNR and startle reflex seems to be worse". This has been the beast in our life for the last 4 years. It has gotten better, but over the last few months seems to be happening more.

What is ATNR?

The asymmetrical tonic neck reflex (ATNR) is a primitive reflex found in newborn humans, but normally vanishes around six months of age.

It is also known as the "fencing reflex" because of the characteristic position of the infant's arms and head, which resembles that of a classically trained fencer. When the face is turned to one side, the arm and leg on the side to which the face is turned extend and the arm and leg on the opposite side bend. For example, in children with cerebral palsy, the reflexes may persist and even be more pronounced. As abnormal reflexes, both the ATNR and the TLR can cause problems for the growing child. The ATNR and TLR both hinder functional activities such as rolling, bringing the hands together, or even bringing the hands to the mouth. Over time, both the ATNR and TLR can cause serious damage to the growing child's joints and bones. The ATNR can cause the spine to curve (scoliosis). Both the ATNR and TLR can cause the head of the thighbone to partially slip out (subluxation) or completely move out of the hip socket (dislocation).

ATNR being a reflex, means Joey has NO control over it. It usually happens when Joey is irritated by anything, however it can also just happen because the wiring in his brain is freaking out.

He also has the startle reflex. What is a startle reflex?

The startle reaction, also called the startle response, startle reflex or alarm reaction, is the response of mind and body to a sudden unexpected stimulus, such as a flash of light, a loud noise (acoustic startle reflex), or a quick movement near the face. In human beings, the reaction includes physical movement away from the stimulus, a contraction of the muscles of the arms and legs, and often blinking. It also includes blood pressure, respiration, and breathing changes. The muscle reactions generally resolve themselves in a matter of seconds. The other responses take somewhat longer. An exaggerated startle reaction is called hyperexplexia (also hyperekplexia).

The startle reflex is not physically debilitating. Just an annoyance.

There are therapy tools to help in decreasing these reflexes. The startle reflex is very simple to do, however, the therapy for the ATNR is much more difficult and complicated.

Anyways, the issue with these reflexes is, WHY IS JOEY GETTING WORSE WHEN IT COMES TO THESE REFLEXES? Either something physical is bothering him and that is his body saying "OUCH". Or in my opinion, he has become more aware, so more things physically and environmentally are bothering him. I like the second outcome better, but this means that we need to find a way to easy his brain to calm the reflexes. This would mean medication. YUCK! I hate the idea of putting him on meds. If it is the first, then that's easy, find what the problem is and fix the problem, the reflexes calm on their own.

So I will take Joey to the pediatrician for a complete check up. We will then go from there.

As for some great news. Joey has been doing awesome sitting. Last week he broke his record and sat for 20 min 38 sec. He never fell over, we had to lay him down because he was tired. Then today I got the call that he sat for 24 minutes before we laid him down to rest. WHOO HOO!

It is very comforting to know that while small things hold him back, he is still making HUGE progress. 4 years since his accident and he is still improving :)

4 Years in the Making

4 Years in the Making..................It has taken us 4 years to get to our new normal.

Over our lifetimes we are constantly changing our normal lives. For example; when you go from single to married and then from childless to many children. When you move to a new place or get a new job. Some peoples new normals can take a couple weeks to get use to while other normals can take years. Some people always have easy transitions between normal and others have very difficult transitions. Also everyone has different normals.

4 years ago today our lives changed. It wasn't by choose and came as a surprise. It was not a wanted changed. And it has been a very hard change. Our last transition to our new normal has taken us 4 years to adjust to. So now instead of just the worry of where to live because of school districts, we worry about the house being handicap accessible, does the weather effect Joey's body and attitude, does the school district offer special needs services, what kind of therapy does that city provide. Also do I buy a SUV or Mini Van for the family, instead we think is it wheelchair accessible, how many kids can fit in the car, and will a larger wheelchair fit when Joey grows. We don't just worry about saving for college, we also worry about saving for therapy and equipment that insurance doesn't cover and medical bills. We choose Pediatricians, Orthopedics, Neurologist, Gastrotologist, and Opthamologist based on if they are familiar with special needs kids. We don't just make an annual Peds appt., we make annual Peds, Ortho, Neuro, Gastro and Opthamology appts. We get new AFO's and leg braces every year. We are constantly filling out paper work for CCS, Medi-Cal, IHSS and IEP meetings. We always have diapers to change and special feeding chairs and medical beds, special supplements and food to make. We don't go to baseball or basketball or football practices, we go to therapy.

So with all this said you can see how it has taken us 4 years to transition to our new normal. I can't say time has made it easier, just different. We still have 10x the amount of worries, but we do get to smile a bit more nowadays.

OK now a little about Joey. Joey has come a long way over the last 4 years. He is able to be put in a sitting position and can sit independently from 5-20 minutes. He can bare weight on his legs and hold himself up for a few seconds. He can run in his gait trainer at school and can reach and touch objects when asked. He can eat anything and everything now. He can roll over from his tummy to back and can even say some words. He can see out of his peripheral vision and is getting glasses this year to help with his central vision. He understands everything and even has his own way to let us what he wants.

I still think often of the Joey that was taken from me 4 years ago, but they are great wonderful memories and I am glad I have them.

The following is a video of Joey over the last year. Enjoy!

Tickle Me Elmo and Joey

For Christmas Joey got a Tickle Me Elmo from a great friend (like a great Aunt to him). Well before his accident his Grandma Marleen searched everywhere and finally found one for him. I was sure he was going to like it, but he HATED it. We would turn it on and he would go over to it and kick it across the room. Well he didn't have enough time to get use to it before his accident 3 weeks later. When he received it for Christmas it choked me up. It choked me up because of the memories it brought back. It choked me up because someone, without reservations, thought about buying him a present and thought hard about what he might want. So thank you so much Auntie Jan and Kevin. I really really appreciate it. I appreciate it more then you know.

Here is a little video of Joey and Tickle Me Elmo. As you watch it you can see he is not quite sure, but then decides he likes it until it bumps him.

Enjoy!