Wednesday, June 30, 2010

Panama City, Panama Day 4

Today has been great. Patrick received his second stem cell infusion today. He did great. It went even more smoothly than yesterday if that was possible. We have met a lot of other people who are down here receiving treatments. We met a lady with MS who has been here for two weeks but is going through a month long therapy. She is already doing better.

We met a man who is in his 60's that has MS. He is doing a lot better. He said that he is now able to change his clothing without being held by another person. He has been here for a week. We met a retired police man from New York who has brought his thirty year old son. His son has a rare type of viral infection (I had not ever heard of it) but they knew three others from the support group they attend that had the treatment. One recovered significantly and the other two not as much.

We have met two other children with autism that are here this week. Patrick is doing great. I am not sure when to start expecting results. Friends whose son has done great said it takes about a month but another family saw results in a week or two. I think it varies per person.

I have to say that Patrick is talking A LOT. He got in our bed last night and was singing his "Sunday school songs." One thing I did notice this morning is that he was making up a story about two of the animals in his book. He told me the "friends" a dog and frog were going on a trip together. This was interesting because he typically is not real imaginative about making up stories. In fact, this would be a first.

He has enjoyed swimming all day. Tomorrow we are taking a train ride to Colon' down the Panama Canal after he sees the doctor. I will keep everyone posted.

Tuesday, June 29, 2010

Panama City Panama, Day 3

Patrick received his first stem cell infusion at 2pm today. He did just great and the whole infusion probably took less than ten minutes. He will get three more this week. Patrick sat in his dad's lap and was a real trooper while the nurse gave him the "stick."

I promised him that after he was finished that we would go the mall. We ended up at the one by Punta Pacifica Hospital (which was very nice). He rode a train that takes kids all around the mall and he picked out two books.

He is doing great tonight. We did not expect any side effects to begin with so he is basically just swimming and playing right now like he has been since we arrived. We are staying at the Canal Country Inn and Suites. Another great part of this hotel is that a TGI Fridays is connected to it. Packy has been eating his favorite meal of grilled chicken and fries there two times daily. Ha.

He will have his second IV tomorrow at 2 PM. I will keep everyone posted.

Monday, June 28, 2010

Panama City, Panama Day 2

We started out our morning early. The Stem Cell Institute sent a driver for us at 7:45 AM (they are on the same time as we are at home). After meeting Melisa and Vivienne at the clinic and reviewing all of Patrick's paperwork; we then sat down with Dr. Jorge Paz Rodriguez. He is very nice.

Scott Smith met him last month in Miami where the Dr was speaking. I have only heard good things about him and so far he has impressed us as well. Completely down to earth, etc. We did a review of Patrick's medical chart before we went over to the Punta Pacifica Hospital where Patrick had to have his blood drawn.

The hospital is very nice, it is an affiliate of John Hopkins University. It is very typical to what you expect from any hospital you walk into back home. Patrick did have to do a general anesthesia so they could draw all the blood for the lab. This was probably ten tubes; then they went ahead and left the iv catheter in his hand. Upon waking, he was not a happy camper with his entire hand and fingers taped up.

Dr. Rodriguez himself went ahead and untaped Patricks hand and removed the catheter back over at his office. He said that since Patrick has experience with sitting for IV's that we will just do that each day. He said that the actual stem cell injection will only take about 5 to 10 minutes. This also allows Patrick to swim without any problems with getting the catheter area wet. He is actually swimming right now as I sit by the pool and type this.

Today is a typical Panamanian weather day: hot, sunny and humid. My type of climate. HA. We met two other families that are here with their small children with autism and also an older man from the states that is here for a procedure as well.

I found it interesting that I filled out and signed the same type paperwork as you would in the states before going through any type of procedure. Basically as far as health care goes I have been unable to see any difference in practices other than most of the nurses are not bi-lingual.

Tomorrow Patrick will have his first stem cell transfusion. Our appointment is at 2 PM. Basically the worst part of it for him is over with the large blood draw that occurred today.
So far so good!

Sunday, June 27, 2010

Panama City, Panama Day 1

We arrived late last night to some warm and humid weather, much like at home. Patrick started out his morning swimming but the rain settled in after lunch and has stayed all evening. We have our first appointment in the morning at the hospital here and with the stem cell clinic. They will examine Pack at the clinic then we will go to the hospital to have his blood drawn and the IV port inserted. He will receive the stem cells for the four days following.

He is happy to be here. He loved the plane ride and he likes hotels. He is living it up really good tonight, but I keep explaining that we do a see a Dr in the morning. So far, so good.

Sunday, June 20, 2010

Action Packed weekend

Hi everyone! What a great weekend here. I have some great pics to share. I had a great time judging the McCracken County Fair pageant with sisters Jessica and Chelsie Harrison. Those two beautiful gals have been competing (and winning) pageants all over since they were both tiny.

We had a great time talking to the candidates for queen. What a beautiful and talented group of young ladies.

My daughter Rosemary spent Saturday morning over at the Dixieland Dolls and Darlings pageant. She was excited to win Grand Supreme.

I had to miss watching her since our FEAT (Families for Effective Autism Treatment) group hosted a national author and speaker, Dr. Stephen Shore. What a wonderful person! Dr. Shore was diagnosed with autism as a toddler and at the age of 4, it was suggested his mother put him in an institution. He is now married, and a professor at Adelphi University in New York.

The turn out was great and the story ended up on the front page of the Paducah Sun newspaper today. I think we were able to get a positive message out and help educate others in our area who needed more information on autism and aspbergers syndrome.

Busy week coming up. We leave for Central America on Saturday morning.

Friday, June 18, 2010

Stephen Shore, Beauty Queens and Toy Story 3

Hi everyone!

WOW what a weekend. I had the pleasure of picking up Dr. Stephen Shore at the airport today. Our FEAT (Families for Effective Autism Treatment) group is hosting him as a guest speaker tomorrow. He was interviewed by the newspaper tonight. Tomorrow he will be speaking at the Easter Seals West Kentucky Child Development Center in Paducah. He is a very nice man. Very impressive. At the age of 4, it was suggested to his mother that she put him in an institution. Now, he has a Ph.D in Special Education and he helps other children who are on the autism spectrum. We are excited to have him here.

Speaking of kids, I know that all four of mine are anxiously awaiting Toy Story 3. The boys are all so excited to see it this weekend!!!!
Rosemary is excited because she is competing in the DixieLand Dolls and Darlings Pageant in the morning. After the Stephen Shore program I will hurry over to the Ritz Hotel to catch the end of her pageant.

It is a busy crown and banner day because after the pageant (the first one) then Rose and I are off to the McCracken County Fair pageant. I am judging again this year and Rose will be assisting Suzy by greeting people and handing out programs. Rose is excited to wear her Regional NES crown and banner (I think she likes it because it is so big). :) I love judging this pageant. There is always such a nice group of girls and that makes it a lot of fun.

I had to re-post this pic of Marshall County Fair judging. We had a great time. Joni (the lady on the left) and I both traveled over together. We had dinner and enjoyed a nice was a big pageant....they had the Little Miss group and then went all the way up to the Miss.
I can't wait to update tomorrow night with pics of all events. I get to show off that beautiful Mrs. KY US sure gets a lot of comments. Everyone thinks it is beautiful...and I love it too because it is so comfortable. :) Stay tuned!

Wednesday, June 16, 2010

Panama Trip Update

Hi everyone, I have had a lot of emails about our upcoming trip to Panama for Patrick's stem cells. We fly out one week from this Saturday. We will be in Panama for one week, flying home the next Saturday. Patrick is very excited!!! He keeps handing me the Panama vacation guide book and telling me that "Patrick wants to go to Panama."

I had to include a pic from our recent trip to Holiday World. It took me three tries to get a pic where they were all looking, by the third try Bob had quit smiling at me. This was right before we headed down to the water park side section of the park to cool off so I also think they were getting fairly warm in the little train.

Patrick's Dr is sending me a kit to get some new labs done before we leave so we can have some comparisons that are current for when we get back from Panama. I am also completing an autism behavior assessment on line so we can re-do it about one month when we get back home. It will be interesting to compare the results! Thank you for your prayers for our safe trip and a successful procedure for Packy.

Tuesday, June 15, 2010

My favorite time of the year!

"Pageant" and "Racing" season is upon us. I think this is one of my favorite times of the year. June is a busy month for my family. My husband has a couple of races scheduled and he is twisting my arm to get behind the wheel of the #13 car! Which of course I am definitely up for!

Rosemary and I have been making some fun appearances together. She is Midwest NES Little Miss and she LOVES wearing her own crown and joining me. We had a ball at the Indiana Railway Museum. Our entire family got to take an old fashioned train ride with a couple hundred fourth graders! WOW. :) Despite the heat we had a ball at the Superman Festival last weekend. The boys wore their own super hero costumes until the heat was too much. Of course we got to meet Superman....again. This year they decided to be Bat Girl, baby Spiderman, Spider Boy, and Batman. Of course, dad and mom pulled out our Superman and Supergirl costumes for the occasion.

Our family had a great time promoting Autism Awareness at Holiday World. Above is a pic of Pat and I in our autism T's on the kiddy train. Luckily, I have started teaching Rose how to use the camera.....we have way too many pics of dad with the kids or mom with the kids. We decided it was time to get more of mom and dad having fun too!

We have our Panama trip coming up at the end of the month. This weekend will be a busy one too. I have Stephen Shore and the FEAT group on Saturday morning and then I get to be a judge at the McCracken County Fair pageant. This is one of my favorite pageants to judge. We always have so much fun here. I received so many positive comments about my appearance list that I keep on the All American blog that I decided to go ahead and post it on here as well. I have more planned for July and I will keep you posted.
Have a wonderful day!