Sunday, January 16, 2011

New Adventures

Well It has been along time since the last post. Nothing new had happened. Well this week we are starting a new adventure. We are seeing a Doctor in Plain View NY who Uses Transcranial Direct stimulation. You What is That? Well they use a device that give a low electrical stimulation to certain parts of the head. The theory is it helps these parts of the brain to wake up. The goal is to get Jonathan to talk or at least to try. Yesterday he made a sound that was thought to mean Home. We will see if this continues today. I will post more if and when it happens

Tuesday, December 9, 2008

Dr. Stewart Visit and Our Progress

Well we saw Dr. Kendall Stewart in Austin TX on Monday. Our tests on our hearing and hearing reflexes were mixed. No Reflexes in our left ear this time but he said that is normal as they will fluctuate until we are Better. Our OAE test was awesome it was much more normal than ever before!!! So we know that Jonathan is hearing us better and his nervous system is able to receive the data and process it. We have always had trouble processing auditory input.

We also didn't have to hold Jonathan down so that they could do the tests this time. He was so calm and just sat there with the test things in his ears!!!! I can't express enough how big a deal this is for us. In the past we have had trouble getting the testing done because of how much Jonathan would fight and move. This time his dad held his hands and he didn't even fight to have him let go. I usually hold his head still which takes 2 hands and lots of strength to keep him form shaking the probes out. This time all I did was stroke his cheek and head and he just sat there!!!! Too awesome for words to express our excitement!!!!!!

Then our next big wow came on the flight home. Jonathan was actually looking out the window of the airplane and noticing the clouds, the ground below and how close or far it was. It was like he was seeing something totally new. Like when a baby first discovers his hands. Jonathan has never examined anything like this ever before. This reminded us of our other "normal " son the first time he understood what flying was. How intently he examined every little change as we flew. This is so huge to us!!!! We are super excited!!!

Now I guess I will explain what we are going to be doing from Dr. Stewart. Dr. Stewart is always researching ways to help our kids and his latest findings show that our kids Have low Homocysteine levels which is all part of the bodies methylation process. And at the top of the process. So in order for our bodies to make Homocysteine we need 3 things Methyl b-12, Methyl-Folate and P5P. Since our kids don't have good stomach and intestine processes it is very hard for them to absorb this nutrients orally. Also since the whole Methylation process is messed up they can't convert B-12 and Folate into the Methyl kind. So we will be using shots of these 3 compounds to get this into Jonathan. We had tried the Methyl-B-12 shots before with not much result. But if he was low in the Folate and P5P his body couldn't produce the Homocysteine which is the building block for the whole methylation process.
The other missing piece is low Dopamine levels. This is why our kids stim and don't sleep well and a bunch of other issues too. So we will be starting on a product called Neuro-Transmitter Support by Neuro-Biologix to help with the dopamine levels. It should be no more than 4 weeks before we start to notice changes. So I will post again as things happen.

Monday, November 10, 2008

Gains since Last Stem Cell treatment

It has been about 2 months since we went. We are seeing small steady gains. Things we are seeing: more eye contact, following directions better, seeming like he understands things in general better, more little sounds that seem to go along with nonverbal communication, more determination in getting what he wants, improvement in self help skills. We are still hoping to get a big jump on talking but we will have to wait and see.

Wednesday, October 8, 2008

Jonathan's 2nd Dose

As dad went to hospital for the procedure...

I (dad) will attempt to give a rundown on how it went. We were driven from the hotel to CIMA hospital - private, owned it seems by GlaxoSmithKline.

We waited about ten minutes to be brought back for the procedure. Jonathan had fasted 8 hours before and had little tiny scrunched up veins (we normally fill him with water before a known "stick"). The anesthesia was by IV and it took some doing to get a vein (I lost count of the attempts - this has happened here in the U.S. as well - been there,done that, hated it!)

Once sedated it took less than a minute to administer the stem cells into his spine.

About fifteen minutes later we were in the lobby waiting for our ride back to the apartotel. With travel we were away for less than two hours.

Now we wait! This is the hard part. We have had many interested queries from friends and family -- nothing to report yet!

Thursday, September 18, 2008

Jonathan's First Spinal Stem Cell Treatment

I'm the dad, standing in for the missus as I went to hospital for the treatment.

After our driver brought us to CIMA, a brand new hospital brought to you by GlaxoSmithKline, we had the usual paperwork before being brought back for the procedure.

Due to some confusion as to the time of our appointment, Jonathan had not fasted for the full time. So the choice of anesthetic was changed - this meant that he would not be "out" as deep, and would take longer to return to an alert state. Lesson - fast for eight hours! The cells had to be used same day or they would be wasted.

We were brought back to the treatment area, a set up which looked similar to an ER area at home. A vein was found without too much difficulty -- normally a challenge! He was sedated by syringe, it didn't take long to go out.

Then the area on the lower back was treated with antiseptic/analgesic - which had to dry for a bit before continuing. The Dr. showed me the fluid from the spine after the puncture, assuring me that it was a good "stick". He then made sure I looked at the syringe for Jonathan's name before administering the cell laden fluid. The actual administration of the cells took less time than typing this paragragh.

It took 30-45 minutes before Jonathan was awake enough to move - he took a nap after they were done with him. When he woke up he thought he was ready to go - NOT-- it took a few more minutes before he could walk - assisted! -- and we returned to our home away from home.

Jonathan's cerebral/spinal fluid now contains the matched adult stem cells. That was yesterday, tomorrow the second and final dose. I will report on the difference in the procedure with the preferred anesthesia.

Monday, September 15, 2008

Finally arrived in Costa Rica

We got here!!! We sat for 2 hours at Newark waiting to take off!!! Part of it was weather here and part of it was traffic at the airport. We got in at 11:45pm eastern time. Then you have to go through immigration, then get your bags, and then go through customs. We finally got to the hotel at 1 AM eastern time. Needless to say we are a bit tired to day.
The boys did great!! Christopher slept for about 2 hours on the plane. Jonathan didn't so he is a bit tired. We will take it easy to day just get the rental car and go to the grocery store.
We had eggs with cheese and pepper and gallo pinto for breakfast. Also a corn tortilla with ham and cheese. plus all of the usual Costa Rica accompaniments like ham and cheese, fruit, a yogurt drink, local fruit drink, and bread.
Tomorrow is our first appointment at 7:30am to get blood draw to match the stem cells. Then our next appoinment is on Wednesday at 10:30pm to get the first stem cells in the spine. Mark will go with Jonathan and I will stay Christopher.
We plan to go to Poas Volcano and do a tram ride through the rain forest on tuesday and wednesday. Thursday we might do a coffee plantation.
We will keep you all posted as to our adventures.

Friday, September 5, 2008

Costa Rica Here We Come Again

Well we have one week and one day before we leave for Costa Rica again. We will be getting more Stem Cells. This time we will get them in our spine instead of intravenously. We are told they have been getting better results doing it in the spine. We are anxious to get the Stem cells and see some progress.

We are still seeing small changes with Jonathan. He is more interested in the world around him, he is not totally mute, he is laughing a lot more and making little sounds to emphasize his nonverbal communication. We are hopeful we will see much bigger changes with this next treatment.

We will post while in Costa Rica and after we get home as we see changes.