Jordyn's Fight For Sight

Hi there! Haven’t written in a while, just watching things happen!

We noticed over the weekend that Jordyn was sitting back from the tv about 4ft…..she has never been able to do that before! I asked her if everything she saw was clear and she said that most was pretty clear, but still detail was kind of a blur.

We go to the doctor on Feb 9th for her first doc visit since returning home! We waited longer than planned to make sure progress was happening.

I will post the results after the appointment!

Also, Jordyn will be speaking at the “Medical Awareness and ONH Reunion” on Sunday March 22, 2009….so if you can make it out, we would love to meet you!

Well…it has been just a little over a month since our return home from Thailand and we are slowly seeing some changes. We knew that with jordyn being a little older that the treatments results would possible be different than that of a smaller/younger child. With that said though, she asked me the other day if we were taking a different way to pick up her step-sisters because she didn’t recognize the road….I told her, “no, this is the same way that we go everytime..why?”…she said, that she had never noticed all the buildings before—wow!!!! This was really neat! We find ourselves pulling slowly up to or by road signs so she can read them to us! For most things she doesn’t realize when she does something or see’s something that WE have never seen her do before. Instead of holding a glass to her nose to pour a drink, she stood up straight and poured like a pro the other morning…she realized what she was doing and immediatly called us to come see! That was really awesome!

Jordyn is doing very well in 5th grade this year….she isn’t having to use her CCTV (magnifying screen) for all her classes like before and can participate more in her PE class. Slowly but surely her body is taking baby steps toward a brighter future for Jordyn!!!!!

We finally made it back home on Sunday!! It’s nice to be back. Jordyn just started to school on Wed–she is a big 5th grader this year! She said that she is noticing a difference in her vision when she works with her CCTV screen at school. This is the screen that enlarges letters,pictures, etc. for her.  Other than that…it seems to be a slow process, but we are very hopeful for more improvement!!

I am still working on my “Guide to Thailand” for those of you who are looking forward to making the journey there for treatment. Sorry for the delay…just trying to settle back in to life, work, school, etc.! Should have something soon though.

Thanks for all the comments by the way!!!!

Jordyn has never really had a need to learn the skill of catching a ball or playing anything like that for that matter…until NOW!!!! She is catching objects from 15 to 20 ft away..woohoo!!!! We noticed that yesterday! The skill of “catching” will still need much improvement and training, but SHE SEE’S IT COMING…..!!!!!!!!!!

 In her OT theropy class, the girl throws the ball to her and she volley’s it back…like volleyball! Can you beleive it? We are so excited  to see some results…I don’t think the clarity or detail of objects has changed much..but definetly her range of vision has expanded!!!! We are so happy and proud of her…she is such a trooper!!!! Keeping our fingers crossed for more to come in the future!!!!!

WOW…we have had a long but good couple of weeks since I wrote in! Mom finally got to town and since then we have been goin and goin, and I became a “BLOG” slacker:)..sorry!

Ok…so, besides doing alot of shopping and sight seeing, Jordyn has had 2 more spinal treatments (her last being last night)!!! She went through them like a champ..a little trouble with the IV’s though. She gets so very scared and reluctant to give the nurses her arm, that her veins seem to run and hide…they normally have to stick her 3 or 4 times just to get a good one—which doesn’t help the situation! But last night they got it in 1 try…woohoo! We had them put a numbing cream on her arms and hands(wherever they might need to put the needle) called “embla”…I think that is how you spell it? It is just a topical numbing agent, but it helps tremendously! The only side effects we have noticed are some headaches that tend to show up 1 to 2 days after the treatments and keep her in bed most of the day. We took a couple of days and headed to the Hua Hin beach…such a nice break from things! But, wouldn’t you know it…she was down in the bed most of the time not feeling much like playing in the water and being a kid! Now we are 2 days from our long flight home and hope the headaches subside for that…keeping our fingers crossed!

We are so grateful for all of you that have been sending us comments and emails!! They really make our day here! We are gathering things from the area for a scrap book we will put together after we get home! It’s gonna be cool! We also have tons of pic’s (too many to post) and we will be putting them in the book to and also putting into a format to send out in emails to all who may not see the book. I wish I could post some on this:(!

With only 2 more days here in Thailand, we are going to try to not worry about the traffic or the time and get out and eat at some cool places and see some last minute sights! Also, for anyone in the future who will be following us here in Thailand for any needed treatments…we are putting together our own..”Guide to Thailand”. Just some things that we have done, some things to ask, some things to buy (must haves), places to go to get things and examples of what to look for at each place (groceries,clothes, etc.) Hopefully it will make things a little easier for those to come!

Ok…so my next entry will probly be done from the comfort of home…talk to ya soon!

Jordyn and I hope that all our family and friends back in the states keep safe during hurricane Ike!! It looks and sounds like it will be a big one….YOU ARE ALL IN OUR THOUGHTS AND PRAYERS!!!!!!

September 12th:

Pool theropy this morning! Jordyn really enjoys this. It lets her loosen up and relax, and at the same time, swim and have fun! May took us out again today to see one of the Temples that is close by. We arrived at a small market shop and got on a boat which took us across the water to the Temple. It was really nice there…one of them has some stairs to climb up…straight up I might add—that was kind of scary, but we did it anyway. We got back to the hospital just in time for our team of Doctors to come and check on us. The doctors and nurses are constantly checking on us as well as everyone else…makes you feel like your really being taken care of and not ever forgotten. We headed over to the Tria building again for acupuncture. Today Jordyn got really brave and had 6 needles! WOW!! While we waited our 30 minutes till they came out…one of the staff took us on a tour of the facility…what a gorgeous place. I told Jim I wanted my house to look like that!! We headed down to the cafe in the lobby and had a little snack and hot cocoa before it was treatment time. Tonight it took 4 tries to get the iv in. Oh…she cried like crazy. But is was cold in the room and she was freaking out and it caused her veins to sort of close up.All of her doctors came in and held her hand and calmed her down. Finally they got it and before we knew it she was asleep and the treatment had begun and ended all in about 15 minutes. We are back in the room now and she is sound asleep!

September 11^th:

Nice rainy day today! Rained all night…so most hospital employees were late for work today. We had OT, then went to the Tria building for Jordyn’s acupuncture….it’s so pretty over there. Her doctor lets her open her own needles for him….and today his nurse lady took pictures of us and he took video of Jo with needles in her headJ After lunch time we headed out to some new shopping spots. Beautiful mall!There are soooo many places to shop and eat in Thailand. I was impressed about that. At the mall we had some great pastry food and deserts and after, a 4-d movie…that was neat. Our internet is down here so and my phone card is out….so I can’t call or contact home. I got to talk for a few minutes with mom and Jim…but that’s all. Hurricane Ike is getting closer to the coast and it’s possible Jim will leave to stay clear of the storm…many area codes are being told to evacuate. Mom leaves in the morning….unless the airlines cancel flights…hope notL

September 10^th:

We started the day with a phone call home..we do that every morning and nightL We miss home a lotL OT was at 9 then we headed off to the store to get a few needed items. The doctors team came in in the afternoon and Jordyn showed them how she felt like she was holding her Nintendo game a little further from her face than before!!!! Great news J It’s only a little but something. Jordyn allowed 5 needles in her acupuncture session today….she is getting braver. Almost bedtime…first make our call homeJ!!!!

September 9^th:

Today was a hookie day againJ About 10am and we headed out to some shopping spots that we hadn’t seen yet. We ate and walked around the whole sale markets….lots of stuff to look at and buy. We came back just in time for acupuncture and we just relaxed in the room the rest of the day.