Sunday, December 20, 2009

Family Video

I made a photo book for my mom for Hanukah, but didn't think it would be delivered in time. So I took those pictures and made this video. My plan was to give her the cd of the video and inform her about the book. Well to my surprise the book came in on time. I still wanted to show everyone the video, however I forgot it. So here is the video I made for everyone to see.

Thursday, December 17, 2009

Have We Hit a Plateau?

It has been 3 1/2 months since we have been back from China. We were told that we would see the full extend of the results from the Stem Cell therapy within the first 3-6 months after the treatment. Joey has gained so much from the SCT. His vision has improved greatly. He has gained a lot of it back, however he still has a lot of vision improvements to go. His overall muscle tone has decreased. This is huge because his muscle tone is what stops him from doing so much. He eats much better and is more cognitively aware. He can sit independently for 20 seconds without being prepped first and can sit up to a couple minutes after being prepped. Before it was only about 30 seconds after being prepped. His vocalization has also increased. He says more words and phrases and will hold a conversation with you. His conversations are like having one with a baby. He mimics and googoo and gaga's. It is very cute. So this also has improved a lot. However with all this being said, I think Joey could have hit a plateau. I could be wrong because I do see him all the time and maybe I just can't see it. I don't know. I don't know what to do anymore with Joey. I feel like I have done so much, yet there is still so much I can do. I am frustrated, because I don't have the funds or the time to do it all.

I am going to take Joey to Costa Rica in April for another round of Stem Cells. After that we are kind of at a stand still. I guess I'm so use to running around with Joey that maybe we just need a break, but I don't want to miss out on giving Joey what he needs. The more therapy the better off Joey will be when he is older. I am looking into ABM therapy, but just in the beginning stages of research. Joey will be getting his wheelchair soon and then I will need to get a mini van with a ramp. This will save my back a ton. Insurance and Medical denied Joey his gait trainer (walker). We are still fighting with them. I am going to have the school district help out. Hopefully we can get him walking around the neighborhood soon.

So I was looking at some pictures of the family before Joey's accident. Boy did we look like a happy bunch. There is a light in our faces that have since vanished. My New Years resolution, besides the normal weight lose one, is to bring the light back to our faces. So much of that is personal within each one of us, so I figured if I can work on my light, then the rest will just come. I don't want to be the sad family that has the disabled kid, and poor us. I want to be the family that other people wish they could have.

Well that's it for now. Next week everyone is out of school and off of therapy. We are going to do some spring (winter) cleaning. Eat cookies and have some hot chocolate near the fireplace.

Happy Hanukkah to my peeps and Merry Christmas to my other peeps.

Tuesday, December 8, 2009

What We Take For Granted!

Everyday we wake up and get out of bed, get dressed, eat breakfast and start our day. What we don't think about when we wake up and get dressed and eat are how we do this. We just do it. Every morning when Joey wakes up and stretches, he has to think very hard which muscles and tendons and ligaments and nerves to activate to stretch. He also has to fight past the natural reflexes the brain wants to do to be able to stretch. Then to talk and eat and move around he has to think hard and fight against his body to do these things. Eventually just like the typical us, he is able to do some of these things without thinking. He has learned to stretch without thinking to hard and has learned to laugh without thinking at all. But he still has to concentrate hard when talking and seeing and eating. However, since the stem cells, things are coming easier. One of these things is eating. When we eat, we move our tongue side to side and front to back and up to the roof of our mouths. As babies we only moved our tongues forward, called thrusting. This is what Joey has been doing for a long time. He does move his tongue side to side, but still thrusts it forward. I have noticed over the last several weeks that he is not trusting his tongue anymore. He has concurred this reflex. This is HUGE! Because of this he eats more, eats faster and eats more effectively.

He is learning new things everyday. A lot of his baby reflexes are starting to diminish. This is the beginning to an incredible recovery.

Way to go Stem Cells! Whoo Hoo!

Saturday, December 5, 2009

Energizer Bunny......Keeps Going and Going!

I feel like an Energizer bunny lately. We keep going and going and going.

Monday and Wednesday, Joey went back to school, then had therapy, then off to work for me.

Tuesday, Joey had a Neurologist appt. This was a new doctor we went to and he is great. He recommends that Joey receive more therapy. He is writing a letter to his pediatrician and to the school district requesting more therapy. He doesn't think Joey needs any meds and is doing great.

Thursday, Joey had two doctors appt's. First we visited his Orthopaedic doctor. I was very nervous about this appt. because he was going to have an xray done on his hips and back. It is very common for kids like Joey to have scoliosis and for their hips to be out. Well good news, the doctor said Joey was PERFECT. His hips are in socket and his back is pin straight. Yeah! Yeah! Yeah! Then we discussed new AFO's for Joey. For those of you that don't know, these are braces that keeps his tendon's, ligaments and muscles in his calf's lengthened. Well the last pair he had he hated, so the idea is now to get him either botox or phenol injections first then get new AFO's for him. His doctor doesn't do these injections, so I now have to contact another Ortho in UCLA who specializes in this for CP kids. After this doctor appt. Joey had therapy. He did great in therapy. He is really starting to feel his arms and be aware that he has arms again. WHOO HOO! Then to his next doctors appt. I took him to a Neuro Optometrist. He did some tests to see how well he can see and which eyes and which parts of his eyes he is seeing with. It was determined that he sees only with his peripheral vision. However his right eye is focusing a lot, which means he does have a bit of normal vision in his right eye. So Thursday's doctors appt's were all really good.

I guess this means Stem Cell Therapy WORKED!. He is regaining his eyesight, he has better head and trunk control and he is starting to use his arms more. AND it has only been 3 1/2 mos since we have been home. The research and doctors say we will see results up to 6 mos after the treatment. I can't wait for April when I am going to take Joey to Costa Rica for another round of SCT.

We then decided to have a little fun and take the kids and Grandma Janet to Disneyland. Jessica and Jack decorated cookies, Joey ate everything in sight and we then concurred all the rides. It was a lot of fun. All the Christmas lights and decorations were out. Everything was very festive. Today, Saturday, I took a spa day with friends and got my hair done. Jeremy decorated the inside of our house. we now have a fire in the fireplace and we are eating sundaes.

Ok that's all for now. Please keep up the prayers and thoughts for more improvements from the SCT.

Thank you all for thinking of us.

Tuesday, December 1, 2009

Today Was A Good Day!

Today was a good day, a great day. Boy did I need this.

We went to a new neurologist today. Well my past experiences on visiting neurologists have not been good. These are my least favorite doctors. They seem to have the worst bedside manner and to grieving parents, they just know how to break your heart. Today I met a great Doctor, a great neurologist. He did a full examination on Joey. He tested his eyes briefly and did say that he is tracking. (I visit the Neuro Optometrist on Thursday) So to make a long story short, he doesn't feel Joey needs any meds for his spasticity. He just needs more therapy. Yes more therapy. He is writing a letter to Joey's pediatrician and to the school district requesting more therapy time. He then coached me on the conversation I need to have with Joey's IEP team. I really liked this Dr's way of thinking.

We then went to physical therapy. He did really great. His head control is awesome and he is crawling with assistance. He is also sitting up great too (of course with assistance also).

I am very proud of him. Way to go Joe.