Kacie’s Septo-Optic Displasia Blog

Well today has been a lazy day around here. The day after treatments Kacie has a slight headache and back pain so we don’t do anything. She went to acupuncture this morning and then came back to the room and has lazied her day away. As long as she ain’t stirring to much she is fine. We have finished another Little House on the Prairie book today and had more tea parties. Jessie, Cody’s mom, went to the RT Mart yesterday and bought Kacie a present. It was beads that you can string and make a bracelet or necklace. Kacie started working on that today and has really enjoyed it. She has made 2 bracelets and I believe next RT Mart run we are going to get her some more.  It was so sweet of them to get those for her and I am so thankful that they did. She has gotten so bored with everything we brought and she has really enjoyed doing something different.

We got to meet Kirshner today. She came by our room and visited with us for awhile. We also got to meet her son, Brandon, he was such a delight and brightened our day. Paden and his family, Cody and his family and then Kacie and her family (us) are all going with Kirshner to Ocean World  in the morning. We are looking forward to getting out again.

Thank you for all your thoughts and prayers.

Lovin and missin you all,

Rinda

So sorry it has been a while since I posted. The internet has been down  for what seems like FOREVER!!! 

We went to have rice noodles at a noodle place at the RT Mart. Jack told us that it was really good and we should try it. Before we went we had Wendy write down beef rice noodles. We had quite the adventure while we were there but the waitress knew some english and was so nice and helpful. She even taught us how to use chop sticks and everything. We had so much fun I forgot to take pictures but I hope to go back and maybe remember to take pictures.

We also went to the RT Mart after we ate not needing anything just wasn’t ready to head back to the room. We were looking around and found Kacie a little tea set. She loved it. When we got back to the room she had tea with all her baby dolls.

 Kacie having a Tea Party w/ her Dolls

 One of our many sweet nurses here.

Kacie had her 4th treatment today. She is laying in bed right now listening to her little house on the prairie stories on cd. It is almost 4 hours post treatment. She’s doing really good. She said this treatment was a little rougher than last time but she did great and is fine now.

Lovin & Missin you all,

Rinda

Well not much has changed in the last couple of days. We didn’t do much yesterday. They didn’t take out the I.V. until after noon so we just hung out around the room most of the day. Then they had a party for those that are gettin to go home this week. They have lots of good snacks there. Today after Kacie got done with her acupuncture we got ready and went to KFC, once again, so Kacie could have her shrimp sandwich. Then after that we ran through the RT Mart and got a few groceries. We are now back in our room. When Jack came around to see if we wanted to order any thing for supper, he told us about a noodle place he thought we needed to try it. And Kacie thought that was a good idea ,so we told him we would try it tomorrow. I didn’t take any new pics today cause we just went to the same ol places=~) May be tomorrow and i’ll take some of the noodle place. Thanks again for all your thoughts and prayers.

Lovin & Missin you all,

Rinda

Kacie gettin her I.V. Stem Cells

Well today was a lazy day. We just hung around the room all day watching movies and reading books. Kacie had her 3rd treatment today. It was an I.V. treatment and it was alot easier than the others. I wish they all were that easy. Since they leave the I.V. in til the next day, we couldn’t leave the hospital. Kacie sure was wanting a shrimp sandwich from KFC. So Grandma went by herself to KFC to  get her one. While she was out she also went by the RT Mart and  got Kacie some more Evian water. I think grandma is spoiling her just a little. HA HA  After we ate supper, grandma and me did our own eye test on Kacie. Its not professional, just me and grandma’s observations. Grandma held up her fingers about 4 inches from Kacies face and ask her to count her fingers. Using both eyes she counted 2 and 4 and got them both right.  Using both eyes again we held up a game about 14inces away and asked Kacie what she could see.  She said it looks green and it has words  and it looks flat.  Using just her left eye(the one that could only see light and dark) Kacie could identify the colors red and blue up to 12  inches away. She says she can’t tell what it is she is  seeing with that eye, but when you stick something in front of it she notices it.

Kacie’s next treatment will be on Friday and will be a spinal. Please keep her in your thoughts and prayers.

Lovin and Missin you all,

Rinda

Oh yeah only 13 more days!!

We left this morning around 9:30 am. We went to a place called water world. It is about a 50 min. taxi ride.  It was really cool, there was an underwater tunnel where the fish can swim all around you as you walk threw it. We got to see all kinds of fish there.  From there we headed to McDonalds. Me and Kacie had another double cheeseburger, fries and a coke. It was right next to the ocean, so after we ate we walked to the ocean. (Sorry Aunt Sandy it was too cold for swimming, but I did think of you while we were there=).  We walked up the street for a long way just enjoying the sound of the ocean splashing on the rocks. We found a man selling kites, don’t tell bubby but were bringing him one home! We had great fun getting out today and were so glad our friend April got to go with us. She is the sweetest.

Kacie is still getting tired of us sticking things in front of her face all the time. We will be settin here on the bed and i will stick my finger over in front of her left eye(the one that could only see light and dark) about an inch away and i will wiggle it. She will say What’s that, momma what are you doing? I’ll say did you see something and she’ll say yeah. Ill ask her if it was still or moving and she’ll say movin. I just laugh and say I was just makin sure that eye was still seeing.  I think she thinks I’m like one of those gnats that keep flyin around your eyes and won’t leave you alone. HA HA!

We just got Kacie’s schedule for next week. She will get an I.V. treatment on Monday and then a spinal on Friday. Please keep her in your thoughts and prayers.

Lovin & Missin you all,

Rinda

                                                                   Well today we really didn’t go anywhere. We just took a walk down the street. There is like a park there, it was really pretty. We didn’t walk the whole thing cause we wanted to save something for another day. ha ha They looked like they are getting ready for the olympics. There was lots of things laying around that they were puttin together. It was nice to get out, we’re gettin a little bored just settin around the hospital.

Kacie is doing really good. I think she is gettin tired  of us stickin things in front of her all the time. She’ll say are we gonna play the “what can you see game” again. I tell her I just can’t help it i’m so excited. Her left eye has really made improvements. I think her right one is too. I was having her look at my face and tell me what she could see. She said your mouth is really pink. I told her those were my lips. I ask couldn’t you see it before and she said well before it was just like a  spot on your face. I’m not sure what that means but she thinks it looks different.

Our prayers are being answered,   Thank You Lord!

Lovin and Missin you all,

Rinda

 At KFC   Well after kacie’s acupuncture we headed out to KFC and the RT mart. Judy had told Kacie about some kind of shrimp sandwich that they had the last time we were there and that is all we’ve heard since. She has wanted to go try that sandwich. So that’s where we went today. She loved it. She said she can’t wait to go back and get another. We have been letting her order lunch and supper the last4 times. Once of course, was the shrimp sandwich but the other three times she has ordered pizza, Chicken barbeque pizza. She loves it too. It comes with onions and peppers and mushrooms and chicken. I being the picky one pick off everything but the chicken and cheese and give it to Kacie she really likes all that stuff. I’m hoping she orders somthing different tomorrow. We enjoyed our day out to KFC & the RT Mart. And our chicken barbeque pizza.

    RT Mart          

Well today something has changed! I thought I noticed her kinda look at something with her left eye(the one she can only see light and dark out of). So I then stuck my finger up close to her left eye and was wiggling it. I asked if she could see anything and she said well yeah. I ask her if it was still or moving and she said moving. That started my interest. I then went and found some bright colored things and asked if she could see anything and she said yeah. She’s not sure what she sees but she says it’s something. I held up 5 different things, each one a different color. First I held up a bright red cup and ask if she could see anything and she said yeah, I asked what color it was and she said Red. Wow! I did that w/ a blue cup and a purple doll dress every time she said the right color.  I did that several different times w/other objects. She couldnt tell when i held up a yellow pillow or a green sprite bottle.  But she is seeing something out of that eye!!

I’m not sure about her right eye because she could see alittle out of it already. It will be harder to tell if there is a change.  I can’t wait til in the morning we will be stickin thing s in front of her face again. She may get tired of me doing it. Ha Ha

Thank you for all of your thoghts and prayers.  Please keep them coming.

Loving and Missing you all,

Rinda

Today is thursday here and Kacie got her second treatment yesterday. She did very well this time. She didn’t run any fever. She was in a good mood most of the 6 hrs that she had to lay. She ate spaghettii for supper but she couldn’t set yet up so I had to spoon it in her laying on her side. That was a little messy and I wasn’t a very good sideways feeder.(ha ha) After about 5 hours of laying she was getting tired and impatient and finally went to sleep around 8pm. When she woke up this morning she was complaining of her head, back and legs hurting but now she just says her back only hurts and her legs just when she stirs around. That is much better than the last one. She’s so tuff. I can’t believe the second treatment is already done. We probably won’t do much today, it’s kinda a rest day for her. She is ready to get out again and maybe go to the RT Mart or somewhere. We are thinking that will be our outing for tomorrow, we’ll see. Thanks again for all your thoughts and prayers. We appreciate them so.

rinda

****Well it’s later in the afternoon and Kacie is doing great.  She started feeling better shortly after I wrote. Her backs alittle sore but she has just bebopped around all day. Were definately going out tomorrow!! Probably to KFC again that’s what Kacie wants to eat. ****

 Well today after we talked to everyone from home we went to the RT Mart.  It was the first trip we took by ourselves. Every other time we went out we had someone who could help us. We were a little nervous but away we went. There is a KFC at the RT Mart so that is what we ate for lunch. Chicken sandwiches fries and a pepsi, it was good. It was nice to get out and walk around. Kacie liked to walk up the “rampy escalators” that’s what she calls them.  We made it back with out any troubles. And are now just relaxing in our home away from home. Kacie and me are missing our boys and are counting down the days til we get to see them. Kacie says 19 more days. Every morning we mark another day off our calender.

Tomorrow is treatment #2. It is a spinal. Please keep her in your prayers. 

Rinda

What a brave little girl. Acupuncture is all we are doing Monday and Tuesday morning so our days are pretty free. Wed. is the next stem cells treatment it it will be another spinal. Then Tursday and Friday it is just Acupuncture in the mornings again. Then we are free for the weekend. We are hoping since Kacie will have more days to rest before the weekendThen maybe she will feel like going out again.

Rinda