Tuesday, July 27, 2010

Dreaming of a Better Day

I guess you don't realize how good you have it until it starts to go away.

I'm in a rut. Well I guess that is what you would call it.

Joey has a reflex called ATNR that affects his whole body. The definition of ATNR is:
The asymmetrical tonic neck reflex (ATNR) is a primitive reflex found in newborn humans, but normally vanishes by the child's first birthday. 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. 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). When abnormal reflexes persist in a child, early intervention involving extensive physical therapy can be beneficial.

Ok, now you know what I am up against. Over the years since his accident, his ATNR has gotten so much better. It was only affecting him when he was really really mad, he could become irritated, but it wouldn't affect him. In Arizona during ABM, he starting showing the ATNR all the time. Even with very slight irritability. He goes into ATNR almost 50% of his day now. He is in slight pain when he goes into ATNR, it twiks his whole body. He also has a startle reflex. this has been more persistent, but not to bad. Now that we are home he is still having very bad bouts with his ATNR. He is also not eating much. If any of you have seen Joey eat you would understand that eating is Joey's favorite activity. I am having to force the food down him during lunch and sometimes during breakfast. Ok and to top it off he has decided to change his bed time. He use to go to bed at 8:00p, you just laid him down and night night he went. If it was up to him, he would stay awake till midnight. I have been putting him down between 9-10 and letting him cry. He will scream bloody murder from 30-60 minutes before he falls asleep. This is a heart breaker for me, but it is the only way he will fall asleep.

So some people have suggested that maybe Joey is sick or something. No that is not the case. The ABM reprograms his nervous system and messes with the brain. His brain just has to integrate all the information he got from the ABM sessions. Last time we did ABM it took a few weeks for him to get back to normal. The good thing about the ABM is that is eyesight is much better. He is also cognitively better.

All this does not make for a happy mommy. It is very hard to see your child not happy. I want to head back to the gym and want to diet again. I want to go meet my friends and talk on the phone. I want Joey to just be happy and not irritated all the time. So what do I do when I'm in a rut, I EAT! I can't help it food loves me, I love food. I get every depressed. Guess I just have to ride it out and know that this is not the worst he has ever been.

Currently we are doing HBOT. We head out to Ventura, a 45 min drive, everyday, sometime 2x a day. Right now I'm ok with it, I'm sure I will so been tired of the drive soon enough. My babysitter is going to help and take him some of the days to give me a break.

I also miss my other 2 kids. They are at sleep away camp and will be home on Saturday.

Well enough of my moaning and groaning. I am going to sleep now and going to dream of a better day for Joey and I tomorrow.

Saturday, July 24, 2010

Anat Baniel Method (ABM)

We are finally home. Seems like I haven't been home in weeks. During the week of July 17th, I took Joey to Arizona for ABM therapy. My friend Pam from Colorado joined us with her whole gang, 1 princess and 3 boys. We had a great time hanging out. Joey went swimming a lot and got to play with the boys, which he enjoyed tremendously. I also met a new friend from Yuma, AZ, Michelle and her son DJ, who has Autism. I learned a lot about autism this week. Most important thing I learned is not to refer to the child has being Autistic, but to say he has Autism. (hee hee hee, inside joke, love ya Michelle)

Anyways, Joey received 2, 1 hour sessions of ABM a day for 5 days. At first I didn't notice any changes, but over the last couple days I noticed his eyes are focusing more. We now take a week break of physical therapy, start HBOT on Monday for 40 sessions and then school will start on the 25th of August. After about 6 weeks if I see significant changes, I will plan another trip to AZ, probably around x-mas break.

Pam and I made a video of one of our days in Arizona, I guess you can say it is a vlog. Here is our vlog of 1 day in Arizona.

My other 2 kids are at sleep away camp for one more week, so it will be nice and quite in the house, with very little mess. Whoo Hoo!

OK, time to start my day. Talk to you soon.

Thursday, July 8, 2010

Summer Vacation

I thought vacations were suppose to be relaxing. Well I'm sure they are, however I'm not on vacation yet, so the stress level and craziness is high.

On Saturday we leave for 5 days to Lake Havasu, we get back on Thursday and then Joey and I leave on Saturday for AZ and the kids leave for sleep away camp on Sunday. I have a lot of preparing to do. Not only do I need to finish packing the RV and head to the grocery store, Joey has therapy, Jessica has tutoring and Ortho appt. and Jack has uniform fitting for football. Then Jessica and Jack both have a doctors appt. next Friday and I also have to take my minivan in for repairs. Amongst all this I have to figure out what is going on with the invitations for Jessica's Bat Mitzvah, finish getting address's ready, finish her montage and sign in book and do a lot of work for our kids program at work. Oh and I can't forget about getting the Rx and insurance info and therapy evaluations to the new therapy clinic for Joey. WOW I'm exhausted just thinking about it.

OK enough about my craziness. As for Joey, he sure has changed a lot over the last 3.5 years. He has grown a ton and is the size of an average 5 year old. He moves constantly and babbles non-stop. His sleeping patterns are always changing and not for the better either. He has decided now not to go to bed till about 10:30 pm and wants to fall asleep in daddy's arms. What am I going to do when Im in AZ and daddy is not with us.However his appetite is the same. He weighs about 37 lbs now. His casts are off and his braces are on. His feet look great. Insurance and Medi-cal have finally approved Joey's gait trainer (walker), so now he will have 2 of them. One at school and one at home. I am very excited about this. He can walk up and down the street now. I can take him to the mall so he can walk. WHOO HOO!

I bought Joey a cool floaty for the pool this summer. It goes around his neck to keep his head above water. He is able to kick and use his arms to swim. I don't even have to hold onto him. He loves it. We spent about an hour in the pool on 4th of July. He was so relaxed. I love it.

As for new changes in Joey since Costa Rica stem cell, weeeeellllllll? I have seen improvements, mostly with his mouth and his sucking. His body is much looser and his arms are more functional. I don't think he has hit a plateau yet in improving from the CR SC, but the improvements are so little at this point, it is hard to say what I see. Overall his body feels and looks awesome. In August Joey will start his HBOT. This will help the stem cells function. He will also start kindergarten and a new therapy clinic. This I am nervous about, the new therapy clinic. We have been with the same 3 therapists for the last 2 years and they are incredible with Joey. I just love how they work with him. They know what his needs are for each particular day and they know what he needs to improve. It will take the new clinic months to figure this out. I will however save money and miles with not have to drive so far for therapy anymore. So there is a plus in all this.

Well it's time to get up and start my day. Have a great day everyone.

Thursday, July 1, 2010

Forgetting What to Say

Where do I start. I feel that so much has gone on in the last couple days with Joey, but for some reason I have forgotten what I wanted to write about.

Lets see. Sunday we had a little bday party for him. That went great. He got a lot of nice gifts. Monday he got his casts off and his new braces on. On Tuesday Joey went back to therapy after missing a week due to our vacation in Idaho. Usually he is really stiff and it takes us a week of PT to get him back to normal, but that is not the case this time. He is very loose, way looser then ever before. Today I took the boys to the movies to see Toy Story 3. Joey loved it. He talked the whole time and ate a half bag of popcorn and m n m's. Joey is also in summer school/camp 3 days a week for 4 weeks. He really loves playing with his friends. Tomorrow Joey has 2 dr. appts. One for HBOT and the other for his braces.

Oh I know now what I wanted to say. I got a call from the mobility company. They finally got full approval from my insurance and medi-cal to order his gait trainer. We will place the order next week and it takes about 6 weeks to get it. I am so excited about this.

On Sunday we are going to a friends house for the 4th. I am very excited because they have a pool and I got Joey a new floatation device. I can't wait to use it.

Ok well I know I have more to say, but I'm drawing a blank. I'll blog more when I remember what it is.