Wednesday, July 28, 2010

Update on Patrick's Progress

Hi everyone! I know the big question has been what type of progress are we still seeing in Patrick. Well I was gone for a week to Las Vegas and when I got home there was a ton of his artwork saved for me to look at.

He has been drawing and coloring all kinds of things....a lot of trains and house/barn scenes. He is very detailed with them and is so cute when he explains them too. I have to say that he is still doing very good. I have a consult with his Dr tomorrow so I will be able to discuss a few items with him.

Patrick is still stimmy and has been eating paper, shaving cream etc. It appears that the bacteria in his gut is off balance again but I guess we will see. :) I will give a very detailed update after the phone consult tomorrow.

I am having people from all over contact me regarding the stem cell treatment. I hope that our journey will benefit others who are starting on their own. Patrick is doing fantastic!

Hard to believe that school is starting soon. Patrick will be going into the Second Grade right as scheduled. We are very proud of him!

Thursday, July 15, 2010

Patrick is doing great and Life is good

Hi everyone!

Patrick just keeps on doing better each day. He is still ready to go back on "vacation" though. He asks me about going back to Panama daily. :) I have been speaking to three families who are heading to Panama in August; two are going for autism treatment.
This first pic shows him outside riding his scooter. They had fun that day and to our surprise we took Joey's training wheels off and he started riding like a pro on his little bike! You can see how proud he is by that big smile.

I am getting ready to head off for the Mrs. United States pageant in a few days. The kids are excited. They like "helping" me pack. HA. My platform as always is Autism Awareness...I got some neat things to take including new pins and notepads with a great autism logo on them.

When I return, Rosemary will then compete at the Preteen Kentucky National American Miss where her platform is also autism.

When I started out doing pageants in 2006, autism was a tough platform because I had to explain so much to almost everyone that asked about it. Now, in 2010, with 1 in 91 children now being diagnosed with autism, I find more people with questions about it but pretty much everyone is familiar with it. I judged a teen pageant a few weeks ago and I think out of about 14 girls there were two with autism as a platform. It certainly speaks as to what an "epidemic" it has became.

I have had so many emails and calls from people with questions about the Panama Clinic. Their website is Go ahead and look them up and then I am working on typing up some facts sheets about our experience and just details on navigating Panama. We are so glad we went.

I will update everyone when I return next week on how Patrick is progressing. Have a wonderful week!

Saturday, July 10, 2010

Friday....Seeing More Improvement

What a great day here. Patrick is doing extremely well. Here is a pic of him playing with his brothers today. I brought in their large bin of train toys and tracks. Patrick and Bobby set up the entire living room in tracks and houses. They played for hours.

Patrick is wearing the yellow shirt with Bob and Joe in the back ground. His behavior therapist said today that she can see significant gains in his attention span and comprehension. She took him to lunch at Olive Garden. One of my friends sent me a message tonight saying she saw him at Olive Garden and that he was so well behaved.

He literally played with trains until bedtime. He also had a new babysitter tonight and she said that he was perfect and he talked quite a bit.

I took Bobby and Joe to PIR to watch their dad race tonight. We arrived just in time to see him win his heat race. They were extremely excited by that. I have a great picture of them sitting on the new can see the new autism ribbons we had made for both cars and the car trailer.
They look great...very visible. No racing for me this week....I want to keep myself in once piece before Mrs. United States next week. Although I promised Joe and Bobby that I would race the very weekend that I get home.

Above you can see Joey showing off his "big grin." He had a great time at the races. I am not sure what we are up to for tomorrow but Patrick's first week back home from Panama has been great! Stay tuned......

Wednesday, July 7, 2010

Home Again

It has taken me a few days to update everyone on Patrick's trip back home. He actually did not want to leave Panama. He even told me last night that he wants to go back and he pointed his hand where his IV was to say "little sticks okay." Obviously he enjoyed it so much there that he thinks it was worth the "little stick" from the IV. I thought that was cute.

He is still talking a lot. He was up this morning playing with his toys and pretend talking with them. He is still really "stimmy" when he gets excited. He has gotten in to a little bit of everything since arriving home on Sunday. Last night he got out some green paint and proceeded to paint one of his toy trains green to match the real train he rode in Panama.

Packy was thrilled last night to see scenes shot in Panama on a really old Herbie the Love Bug movie. He saw the canal, the ships and got really excited to see the Canal Railway train in the background.

It could take up to a month before we see more results from his treatment. I have several friends whose children have had this treatment and the majority seem to feel that their children saw the most improvements in the one to two month range. The couple children that made early gains seemed to see them with bowel issues and sleep issues. Luckily, for Patrick, he overcame his bowel issues several years ago and we don't have the sleep problems either.

So far, so good. He is doing great. I will try to get a copy of the WPSD-Channel 6 interview to post on here. I didn't get to see the interview because we were in Panama at the time but everyone tells me it is really informative as to autism and the stem cell treatment overall.

I will get some trip pictures posted soon. The kids got in my suitcase and used the camera the night before I left. So lo and behold, I had no camera when I arrived! We bought a disposable one and I need to get the pics transferred to disc so I can upload. I posted a pic above that I took a few hours ago. He was sitting at his computer watching "Brainy Baby Spanish" on You Tube. I noticed that as the picture showed the action and the Spanish word, a voice over would say the word in Spanish as well. As I watched him, the screen showed "Gracias" and Patrick said "Thank You." He also was saying the English version of the colors that were being shown. I have not worked with him on Spanish, last week would have been his first intro to it. I will keep everyone posted. Thanks for all your prayers and emails!

Friday, July 2, 2010

Panama City, Panama Day 6 Last Treatment

Today went great here. We went to the clinic earlier today. We met another family today who are here from the states. The majority of people we have met seem to be here for MS or for a viral or autoimmune type illness.

The little girl from Los Angeles had an allergic reaction to the adhesive on the medical tape from where her IV was inserted. Her hand was red and swollen. It looked very itchy. Her parents said she was feeling much better today but her hand still looked bad.

Patrick has had NO TYPE of negative reaction at all. Today for his final infusion it took about the same amount of time. I also got all of his lab copies from Dr Rodriguez. They ran labs on him when they drew the initial blood. He also gave me the certificate from the lab with the exact amounts of what exactly Patrick received. He received over 5 million cells of the ones to target his brain/oxygen flow and then over 2 million of the type to target his immune system. He received an additional 5 million cells that are not trained to seek a specify site but are looking for weak areas where they can "go to work." I have the exact numbers and exact cell type names, I will post tomorrow. I have already packed it all in a suitcase tonight.

We are noticing even more talking. If he isn't talking to us, then he is talking to himself while playing or singing. He is also drawing pictures that are much more detailed and also telling us about them in greater detail. We took him to the Gamboa Rain Forest today. We took a boat ride down the canal and he saw some monkeys and a crocodile. I asked him about the trip and he told me that he "took a jungle cruise" and that he saw "the rain forest" and "two monkeys and a toucan." I thought this was interesting because I had never used the words "jungle cruise" so he thought that up himself and he told me it was like "Disneyworld." I think they do have a ride there called Jungle Cruise or something like that so maybe that is what he is referring to.

He doesn't want to come home tomorrow. He has asked us to go back to the train station all day today. He loved the train ride and he has a big time every day in the swimming pool.

Some families come back for booster infusions within about six months. We spoke with Dr Rodriguez today and he said that we will touch base on progress and it is too soon to know if we will want to come back or not.

It has been nice to see the other patients and get to know their stories. It seems that for MS this is working really well. We also talked to a few people who has their diabetes and asthma almost cured too. Stem Cell Institute has taken great care of us too. They gave us a cell phone where we could contact their staff or the Dr's at any time. Luckily we never needed to call them for any type of emergency or problem. It was nice too that they picked us up at the air port and they drive us back and forth from all appointments too. That has made things very easy.

Of course for all the diseases we know that stem cells will "cure;" there are no promises for autism. Each child with autism is so different that I think it is hard to know if every child will have the same response. We do know several families who have children that have improved greatly with this treatment.

One week ago I did an ATEC test from the Autism Research Institute to get a baseline score for Patrick before the treatment. On a scale of 0 to 100, Patrick scored a 37. On this test the lower the score the less severe the symptoms of autism are. The test is sectioned into areas of communication, social behavior, cognition and health issues. Today I did the test again (answering all the same questions) and his score was a 23. His dad and I are not "eternal optimists" so I think we are both being exceptionally "cautiously optimistic" about the whole procedure. I was trying to be as cautious as possible when answering the questions so I feel that the 23 is pretty solid.

We leave in the morning for Kentucky. I will keep everyone posted on his progress.

Thursday, July 1, 2010

Panama City, Panama Day 5 Treatment Update

Patrick received his third stem cell injection today. This one was even quicker for him than previous days. We have been VERY impressed with the skill of the Dr's inserting the IV into his arm. They get it in quick, and always on the first try. No digging or probing for the vein either. Which is a huge relief for Patrick!

He has been used to having his vein missed in the past with multiple attempts or a lot of probing around. This has been going so well for him. Tomorrow is his last stem cell infusion before we fly home on Saturday.

We are both noticing increased speech. In fact, Patrick is talking pretty much non-stop. He is also singing kids songs pretty much non stop too. He was so excited on the train ride! He just loved it. It was really neat. We had the driver take us to the city of Colon' on the Caribbean side of the country. We rode the train along the entire Panama Canal. This went through a lot of rain forest and we also saw boats locking through the Mira Flores locks. The ships going past our hotel are huge!!!

Patrick is still very "stimmy" but he is also very excited by all we are doing here too. Between swimming, the train and the playground at the hotel he is having a great time. I think he has decided the few minutes at the Dr office is worth the rest of his trip! Luckily we have a TGI Fridays here at the hotel; we have eaten every meal but one here. Of course, Patrick thinks it is great because he eats "grilled chicken and fries." However, Pat and I have decided that we will probably never eat at one again after this week. HA.

The little girl that is receiving stem cells this week that is also staying at our same hotel got sick yesterday. Her dad said they had a long night. One of the occasional side effects we read about is flu like type symptoms. Patrick has been A-OK. In fact, his appetite has been great and his energy level has been high. We will run new labs when we get home to compare with a set we had taken two days before we left.

We have an earlier appointment tomorrow then Luis, our driver, is going to take us up to the Gamboa Rain forest and the Red Frog area (each about an hour from the city). We really like it here....if our other kids and our dogs were here I think we would stay longer. Until tomorrow......

Panama Day 5 "Interesting Observations"

We have a big day planned after Patrick's treatment this afternoon. I am going on a tour of the Stem Cell Research lab this morning. I had a quick minute to type a few observations about the country and Panama City.

We are staying on the outskirts of the city near the Canal. It is beautiful here. The weather is pretty much the same year round....80's day time, 70's night time. What a climate! The trees and flowers are beautiful..vibrant green, colorful flowers. The animals native to the country are boa's, pit vipers, pumas, jaguars, toucans, iguanas, armadillos, to just name a few. We are across the river from a dense rain forest and there are crocodiles in the river. Interesting huh?

Other than the traffic in the heart of the city, everything here is laid back. Spanish is the primary language but there are a lot of pockets of small languages from islanders in some of the small regions. There is a large American presence here with people who have moved here for climate, retirement or to work in the very stimulant economy.

When I told people we were coming to a hospital and clinic in Panama they acted like I was going to a third world country without running water. Ha. :) Well my husband and I have both been shocked at the construction going on. We both commented that we have not seen construction of this magnitude going on in the US for years. I bet there are at least 20+ high rise buildings going up at once. The city skyline is amazing....think Miami etc. Several local Panamanians we have met have compared Panama City with Miami.

There are very poor sections....same as our cities but we probably plan more to "hide" these areas whereas here they are right next to exclusive condominiums or shopping areas. UNESCO came in and made the old city a protected area and now there is major re-hab and projects going on to restore these mansions and churches. We were in a church yesterday that was built in the 1600's and the altar was solid gold from floor to ceiling. The story is when the Spanish took over back then the villagers painted the gold black so it wouldn't be carted off back to Spain.

The old city reminds me of New Orleans...balconies, lattice work, beautiful wrought iron. Today we are taking the train that runs the length of the Panama Canal. We have a driver taking us to Colon' (we are told this is a dangerous "Caribbean side city") and then we will board the train for the hour ride back to the Pacific side.

One thing we did not expect is the vast amount of luxury cars and luxury goods shops. One of the main malls the "Multi Centro" has as many (if not more) luxury shops then you would see on Worth Avenue or Rodeo Drive. This is just one mall too. We walked in and I was shocked to see Chanel, Jimmy Choo, LV, D & G, Salvatore Feragammo, Tiffany, Armani, and this it just to name a few. What really surprised us though was how BUSY the mall was and that people were "shopping." I would say 95% were Panamanians and money appeared to be flowing freely. The designer Carolina Herrera had just made a stop in her shop to deliver her "newest handbag" personally. I found all this interesting to view as an outsider so to speak.

The hotels seem to be springing up, a new Hilton is under construction right down the road and the casino business seems to be thriving as well. We noticed that police presence seems to be increased right now too. The President of Taiwan and (I think Spain) are both here visiting Panama's President.

Very stimulated economy, very modern city. I will post more on the stem cells tonight.