Weekend Update

Saturday we had a Wedding to go to. Nathan said he wanted to go with us if he felt good enough. We just played it by ear and he was having a so so day so he said he was going to go with. This was going to be a big test. The drive was about 40 min. He does not do well in car rides longer than 15 min. He usually gets all dizzy and throws up due to motion sickness and the Dramamine does not help much for this. We got there OK and he was doing pretty good. Soon after we got there he saw Judy (Judy Burkholder from Sara's Garden) He went right up to her and gave her a big hug. She was pushing Jackson in his stroller and he talked to him a bit and then some of her family came in and she introduced Nate to them and he shook everyones hand that he met. Now this is a HUGE thing. Nathan never liked touch! He would never ever want to give any one a hug. He never wanted any one to touch him either. Now I have seen some days where he still feels like he needs his invisible shield around his space. But to us him willingly on his own going up to people he does not know and shaking their hands and engaging in appropriate conversation is way beyond my expectations of my son. He thought it was cool that there was a (in h is words) open bar. He went and got his own sprite and any time any of the ladies at our table needed a refill he asked if they needed more and he took their glass up and asked the bar tender for more. Again I can not stress that this is a big thing. I was so proud of him. Once the bridal party got there the music got turned up a bit and it was heavy on the base. He started getting a head ache. He could not bring himself to eat because of it. Mark and Jessica and I ate as fast as we could and said our goodbye's and headed home. Mark and I worked out a plan that if Nate was not feeling well and wanted to go home early that I would take him and Mark and Jessica could hitch a ride home with my sister in law. But Jess and Mark was ready to go also. By the time we got out to the car Nate was crying that it hurt so bad that he said he felt like his head was going to implode. I asked earlier in the reception hall if he wanted some pain meds. I had my purse filled with all sorts of his meds so he had a choice as to what type and or strength he needed. He was afraid to take any while there because he did not want to be throwing up there. He is so afraid of being out of his comfort zone when he does not feel well. I can totally understand what he meant by that also. The weather outside was 95' Saturday and extremely humid. We started the car first before we left and had it cooled down by the air and I think that helped also. We brought his aspen caller but he does not like it at all. He says that it hurts and makes him feel like he can not get enough air. But we had it just in case.

After we got home Nate and I were talking and he was holding his head a bit. So I asked what that was about. He said his shunt was swollen. I put my hand on the area on his head where the tubing is at and OMG it was very swollen and hard as can be. He then bent his head sideways and you can see the tubing in his neck that goes down across his collar bone area. He also said that his stomach has been bothering him in the shunt drain area. When he is standing I can feel the tubing very close to the surface. When he is laying down I can not feel it as much. We have already felt that the shunt is not working properly and now this. He has a large belly any way so it is hard to tell if he is dumping CSF outside his stomach. He has no fever so no need for jumping the gun for an infection. I just don't k now. I am going to call his ped in the morning and see if they can order a CT for shunt placement and see what that shows. The problem is that no neurosurgeon locally will touch him. Dr. Bolognese is out of the country till the first of the month now. So we will have to get on this because Miracle flights needs 4 weeks to schedule a flight. I have been told that they can do it sooner if needed. The thing is that we planned the next time we go to NY Dr. B. was going to do the invasive cervical traction on him to test for the degree of his cranio cervical instability. It seems to be better staying there for a period of time to get most of what we need done and then go from there.

I also have it worked out with Judy that the next time Nate has surgery we are going to get in the HBOT chamber a few times as soon as we can to help with his healing process. We may even do a few deep dives especially if they do anything with his bones. Since there is no data or study that has been done on HBOT and EDS (Ehlers Danlos Disorder/Hereditary disorder of the connective tissue). But my thinking is that if the surgery wound can heal faster then that may reduce or even eliminate the adhesions that he seems to form so fast.

All of the HBOT treatments we are doing with Nate is only based on our educated theory of how the body and brain works and how HBOT works as well. This is some what new frontier that we are in hope's of paving the path for others.

Today (Sunday) Nate has felt OK. Not a GREAT but OK. We will take OK any day. But his pain can spike at any time and last for a few min to hours to days and weeks. There is still so much that is a mystery.

Medical Conference update. Things are rolling along with that. Our plan is September 09. We hope to start on raising funds so we can hopefully be able to give the CEU's to Medical personnel for free. That is our goal. Next week Nate has his spect scan. I can not wait to see what that says. We plan on working up a presentation using Nathan's treatment plan the good and bad of it all as another way to aid in treatment/healing process of Chiari/EDS/PTC .

I am not sure if I have blogged any of this before so if I have I am sorry to repeat myself. During the times I have been around the facility of Sara's Garden I have had the profound pleasure of witnessing Miracles. Not just some of the things that we have witnessed with Nate but other children and adults. I wish I could interview every one of their clients and put together a "book". But what I am going to do is get a list of past and present clients and send them a request for them to write their story and also write a letter requesting that Sara's Garden be awarded a Extreme Makeover Home Edition. Their Dream of a Jackson house for the out of towner's needs to be addressed. They are leasing a parsonage house right now. It is a small 2 bedroom house that clients stay for free but it is not handicapped accessible so not all out of town clients are able to utilize. The works are already started for searching for a walk in chamber. Mark works for a mechanical contractor and right now have a verbal that they will provide the labor to install it. There is a large waiting list and they all can not be accommodated due to the limited spaces. Sara's Garden is one of the only non-profit HBOT center. The fees are minimal. Most of all their nurses and paramedics are working there for free to help keep the costs down. I feel something in my heart when I am there. It is hard to explain...but it is all uplifting.

Thanks for reading about our journey. My hope is that some day this information will be able to help others.