In this home
We made a Life.
We laughed, cried, fought, and loved.
In this home
We brought a little girl.
We leave with a young lady.
In this home
We brought new life.
A blessing of Hope and Faith.
In this home
We've mourned.
A grandmother, a father, a child.
In this home
We've tripped over toys.
Kissed scrapped knees.
Held babies in the moonlight.
Read Stories.
Prayed.
Loved.
In this home
We made a life.
Thursday, August 25, 2011
Did that really just happen?
So, we bought a house. Yes, a house. I know it seems TOTALLY out of the blue, but we have been talking about it literally for YEARS. I’ve studied the market in Medina for years. We always knew the house we are in now was not forever. All the cards just fell together, and God laid it out for us.
We have looked at four houses this week. Well, we went in three of them. I couldn’t decide between Crockett Co and Medina, but Jason wanted Medina. So, it only made since that if I was indecisive, and he knew what he wanted, we should pick his choice.
I think we both knew when we went in the house that it was THE ONE. I expected to like it…I did NOT expect to buy it. I expected to buy the four bedroom across the street. Both are about 1600 sq ft, so naturally the bedrooms are bigger in the 3 bedroom. Also, the 4th bedroom in the other one is upstairs above the garage. Jason did NOT like the pitch of the ceiling in that bedroom.
So, a little about the house we chose. Tuesday morning, I put a new listing in the MLS. I made a comment about how cute it was. Didn’t really think much else about it. We decided to go see the 4 bedroom home that afternoon. We thought we may as well see the 3 bedroom, just for kicks. Typically, a subdivision is full of cookie cutter floorplans. This one is different. That’s one of the things I like about it. I’ll have to post pics when we move in. The bedrooms are all together. Call me weird, but I like that. I don’t like split bedroom plans as much. There is also a HUGE master closet, and both of the other bedrooms have large closets as well. We have almost no closet space in the girls’ rooms now. There is also a large hall area in front of the bedrooms, almost like another room. That was truly the final straw for me. I LOVE that space. The kitchen is kinda funny shaped, but it flows very well. It looks great. :0 It is SO CLEAN. The yard is fenced!!! The puppy dogs will be happy with that. There is a patio in the back yard. The only issue I have is one that I would have had anywhere, you can see your neighbors! I have always had a private back yard, so that will take some getting used to!
As we were leaving, some friends of ours drove up, so we will even know the neighbors! We have several friends that live in Medina, including some of Elizabeth and Amy’s best friends, so I think we will be very happy there.
We are scheduled to close at the end of September, and we will move in soon after. WOOHOOO!!!!
We have looked at four houses this week. Well, we went in three of them. I couldn’t decide between Crockett Co and Medina, but Jason wanted Medina. So, it only made since that if I was indecisive, and he knew what he wanted, we should pick his choice.
I think we both knew when we went in the house that it was THE ONE. I expected to like it…I did NOT expect to buy it. I expected to buy the four bedroom across the street. Both are about 1600 sq ft, so naturally the bedrooms are bigger in the 3 bedroom. Also, the 4th bedroom in the other one is upstairs above the garage. Jason did NOT like the pitch of the ceiling in that bedroom.
So, a little about the house we chose. Tuesday morning, I put a new listing in the MLS. I made a comment about how cute it was. Didn’t really think much else about it. We decided to go see the 4 bedroom home that afternoon. We thought we may as well see the 3 bedroom, just for kicks. Typically, a subdivision is full of cookie cutter floorplans. This one is different. That’s one of the things I like about it. I’ll have to post pics when we move in. The bedrooms are all together. Call me weird, but I like that. I don’t like split bedroom plans as much. There is also a HUGE master closet, and both of the other bedrooms have large closets as well. We have almost no closet space in the girls’ rooms now. There is also a large hall area in front of the bedrooms, almost like another room. That was truly the final straw for me. I LOVE that space. The kitchen is kinda funny shaped, but it flows very well. It looks great. :0 It is SO CLEAN. The yard is fenced!!! The puppy dogs will be happy with that. There is a patio in the back yard. The only issue I have is one that I would have had anywhere, you can see your neighbors! I have always had a private back yard, so that will take some getting used to!
As we were leaving, some friends of ours drove up, so we will even know the neighbors! We have several friends that live in Medina, including some of Elizabeth and Amy’s best friends, so I think we will be very happy there.
We are scheduled to close at the end of September, and we will move in soon after. WOOHOOO!!!!
Tuesday, July 26, 2011
A Lesson in Humility
God taught me a lesson today. A lesson in being non-judgmental, in overcoming prejudices, in humility.
Whether we will admit it or not, we all have prejudices. I could not care less what color a person’s skin is, but I will admit that I tend to categorize people by their willingness to work. If you won’t work, and you are able, I don’t have a lot of use for you. Yes, I’m guilty of pride. It burns me up to see people sitting drawing government checks while I have to go to work to fund those same checks, and they get to stay at home with their babies while I have to leave mine.
This morning, God used my neighbors to show me that I am NO BETTER than anyone else. This is actually the first time I have referred to these people as my neighbors. I usually refer to them as the HOOD down the street.
As Amy and I left the house this morning on our way to school, I heard a noise from the van. At first, I thought it was the engine (I have a deep seeded fear of a broken down vehicle, so that’s always my first thought.) As it turned out, it was my rear tire. The wheel was still on, but the tire was completely off. I have no idea how that happened. I was only about 500 ft from my house, but there was no way I could drive back home without ruining the tire and the wheel. A lady came out from one of the houses. She said she would get her son to change the tire. He first said he couldn’t. That was fine, he owed me nothing. I called AAA. 45-60 minutes wait time. Ugh. In the mean time, the son came out. We were finally able to get the tire off, but then we could not find the spare. It turns out that the spare in a stow- and- go vehicle is under the FRONT seats (a little bit of trivia for you there). We really had a time! Well, I should say THEY really had a time. Several people just jumped right in and did it, Amy and I watched. Right as we finished, AAA drove up. Of course. ;)
I wondered if I should offer to pay them, but I decided not to. I didn’t want to offend anyone; they did this out of kindness, not for money. I did buy them breakfast, though, and Amy had an adventure to tell at school today. “My Mama had ANOTHER flat tire!!!”
So, today God took me off my high horse a little bit. He said, “Kathey, you are no better than anyone else. Would YOU have gone outside in your pj’s to change the tire of a total stranger?” I’m a firm believer in the “pay it forward” mentality, but today I was the one receiving, not the one giving.
So, the next time I walk down my street, I’m not going to look forward and avoid eye contact. I’m going to say “Hi, how are you today? I’m thankful God used you to bless me. I hope that my heart for others can grow as big as yours one day. “
Whether we will admit it or not, we all have prejudices. I could not care less what color a person’s skin is, but I will admit that I tend to categorize people by their willingness to work. If you won’t work, and you are able, I don’t have a lot of use for you. Yes, I’m guilty of pride. It burns me up to see people sitting drawing government checks while I have to go to work to fund those same checks, and they get to stay at home with their babies while I have to leave mine.
This morning, God used my neighbors to show me that I am NO BETTER than anyone else. This is actually the first time I have referred to these people as my neighbors. I usually refer to them as the HOOD down the street.
As Amy and I left the house this morning on our way to school, I heard a noise from the van. At first, I thought it was the engine (I have a deep seeded fear of a broken down vehicle, so that’s always my first thought.) As it turned out, it was my rear tire. The wheel was still on, but the tire was completely off. I have no idea how that happened. I was only about 500 ft from my house, but there was no way I could drive back home without ruining the tire and the wheel. A lady came out from one of the houses. She said she would get her son to change the tire. He first said he couldn’t. That was fine, he owed me nothing. I called AAA. 45-60 minutes wait time. Ugh. In the mean time, the son came out. We were finally able to get the tire off, but then we could not find the spare. It turns out that the spare in a stow- and- go vehicle is under the FRONT seats (a little bit of trivia for you there). We really had a time! Well, I should say THEY really had a time. Several people just jumped right in and did it, Amy and I watched. Right as we finished, AAA drove up. Of course. ;)
I wondered if I should offer to pay them, but I decided not to. I didn’t want to offend anyone; they did this out of kindness, not for money. I did buy them breakfast, though, and Amy had an adventure to tell at school today. “My Mama had ANOTHER flat tire!!!”
So, today God took me off my high horse a little bit. He said, “Kathey, you are no better than anyone else. Would YOU have gone outside in your pj’s to change the tire of a total stranger?” I’m a firm believer in the “pay it forward” mentality, but today I was the one receiving, not the one giving.
So, the next time I walk down my street, I’m not going to look forward and avoid eye contact. I’m going to say “Hi, how are you today? I’m thankful God used you to bless me. I hope that my heart for others can grow as big as yours one day. “
Tuesday, July 12, 2011
Where have you been?
Again, with the slacker blogger-itis. Well, in current news, it’s hot as blue blazes in TN. Heat indexes as high as 115. There is just no need for this.
So, I’m just gonna do a quick update of the past 2 months. Here we go-
May—Strawberry Festival! Always fun. Lots of food, parade, family time. Elizabeth spent the night with a new friend. They had a large time. End of school. E had the highest average in her class, got the principal’s award, and the 3rd grade PE award. I turned 35. Ugh. Daddy got back test results. BIG BAD AND UGLY. :( Stage IV Melanoma. Thankfully, the FDA just approved a new treatment. Not cure. Treatment.
June-Amy got a NASTY case of poison oak. On the plus side, E and I are definitely NOT allergic to poison oak. Girls Weekend!!! Headed to the beach with my Peppas for a few days of fun in the sun. And fun in the sun we had. SUCH a needed break from reality. Came home on a Sunday night, got up Monday morning and left for family vacation in Gatlinburg. Another GREAT time with old friends. One of the highlights of the trip was spending the day at Ober Gatlinburg. I need to post some pics of all of this!!! Jason’s birthday. Father’s day. Amy turned 4,567 cartwheels on the living room floor.
July-Enjoyed the 4th with friends. Grilled meat, blew stuff up. Good times. Daddy had his first treatment, and it went GREAT. Work work work. HOT HOT HOT!!! Bought a little (8 ft wide 3 ft deep) pool and set it up on the carport. The kids LOVE it. Amy taught herself to swim. She looks so cute with all four little limbs flailing under the water. Amy got swimmer’s ear, not more swimming for 10 days. Dislike. :(
So, that’s it til now. E is at Grams and Granddaddy’s for a few days, and then Amy will go. E and I have a weekend planned at the science museum, as well as HARRY POTTER this weekend. :)
So, I’m just gonna do a quick update of the past 2 months. Here we go-
May—Strawberry Festival! Always fun. Lots of food, parade, family time. Elizabeth spent the night with a new friend. They had a large time. End of school. E had the highest average in her class, got the principal’s award, and the 3rd grade PE award. I turned 35. Ugh. Daddy got back test results. BIG BAD AND UGLY. :( Stage IV Melanoma. Thankfully, the FDA just approved a new treatment. Not cure. Treatment.
June-Amy got a NASTY case of poison oak. On the plus side, E and I are definitely NOT allergic to poison oak. Girls Weekend!!! Headed to the beach with my Peppas for a few days of fun in the sun. And fun in the sun we had. SUCH a needed break from reality. Came home on a Sunday night, got up Monday morning and left for family vacation in Gatlinburg. Another GREAT time with old friends. One of the highlights of the trip was spending the day at Ober Gatlinburg. I need to post some pics of all of this!!! Jason’s birthday. Father’s day. Amy turned 4,567 cartwheels on the living room floor.
July-Enjoyed the 4th with friends. Grilled meat, blew stuff up. Good times. Daddy had his first treatment, and it went GREAT. Work work work. HOT HOT HOT!!! Bought a little (8 ft wide 3 ft deep) pool and set it up on the carport. The kids LOVE it. Amy taught herself to swim. She looks so cute with all four little limbs flailing under the water. Amy got swimmer’s ear, not more swimming for 10 days. Dislike. :(
So, that’s it til now. E is at Grams and Granddaddy’s for a few days, and then Amy will go. E and I have a weekend planned at the science museum, as well as HARRY POTTER this weekend. :)
Wednesday, May 4, 2011
I love that kid...
Reason #513,234,987 Why I love Elizabeth Aubrey Wiles. This morning, as I was dropping her off for school, I was telling her bye and stuff. She looked at me with an expression that can only be expressed as joy and said, "I think we're having BACON today!"
She is SO my daughter.
She is SO my daughter.
Tuesday, April 19, 2011
Eyeball update...
So, I just remembered that I can check Amy's DNA testing results online. Well, it turns out the estimated turn around for the test is 8-10 weeks. I can check the status of the test online. For example, I know that this morning, they successfully removed her dna from the blood same in order to start the test.
In other words, we still have a wait ahead of us. But, it's good to know so we are not expecting it, know what I mean?
Just as an FYI...some of the wait times are 6-8 MONTHS...and cost over $2500. YIKES!!!! NOT covered by insurance! thankfully, hers is only $91.
In other words, we still have a wait ahead of us. But, it's good to know so we are not expecting it, know what I mean?
Just as an FYI...some of the wait times are 6-8 MONTHS...and cost over $2500. YIKES!!!! NOT covered by insurance! thankfully, hers is only $91.
Weekend in ClarksVegas
The girls and I planned to head to Clarksville on Friday the 15th for some time with Grams and Granddaddy. We were QUITE excited. Then, about lunchtime, I got a text that Amy’s ears were hurting again. AAARRRGGGHHH!!! Needless to say, I was QUITE upset. We took her to the dr after we got off work, and thank goodness, there was no infection. We came out with some flonase. So, now, Amy has nose spray and allergy pills. I was less than thrilled at the prospect of giving her nose spray, but she has been SO GOOD about it.
After we were done there, we finally got on the road. We stopped and got supper at McDonald’s on the way. One potty stop later, we got the Clarksville about 9pm without any major drama, which is always a plus. We unloaded, and hung out for a few minutes before turning in for the night. We were all worn out!
The next morning, it was COLD!!!! Thankfully, I had packed some jeans and jackets for us. The girls, Grams, and I wanted to go out to a few stores. (Well, Grams and I wanted to go, we just took the girls with us. They were less than thrilled) Elizabeth needed some shorts, and we were able to find several pair for her. They are quite cute! She’s wearing a pair to school today, actually. We also picked up a few other things.
After we were done, we went home for lunch. Then, we headed up to Cheatam Dam. None of us had been there in YEARS, and the girls had never been. It was too cold to be out of the car for very long, but we enjoyed driving around and looking. It was different stuff.
After we were done, we drove over to Ashland City, just because we could. Then we headed back home.
We hung out for a while, and then we went to Cici’s for supper. No trip to Grams and Granddaddy’s house is complete without this. Shrek 3 was playing, so the kids were occupied while we ate. ;) After that, we wandered around Lowe’s for a while. I do love Lowes. It’s one of my favorite stores. Elizabeth likes it, too. She likes to look at the kitchens and the appliances. Like mother, like daughter.
Then we headed back to the house. The girls played legos, and Mama and I played Skipbo. We also taught Elizabeth how to play. We had worn Daddy out, so he just rested. Heheh :) Then, we turned in.
The next morning, we headed to Erin. I like to take the girls to my grandparent’s home place, and Daddy had some boards that I wanted to build a storage unit for Amy’s room. We played over there for quite a while and had a good time.
this was fascinating to the kiddos. ;)
You can see my great-grandparents house in this picture. Sometimes, we got to run through the field to their house.
As children, we were never allowed to touch the cistern.
I'm a rebel in my old age, though.
This is the tree where all the DRY FLIES were. ;)
Then, we headed back home. We really had SUCH a good time. We did have to stop at Taco Bell and get beans for Amy on the way, though. You know that girl and her beans!!!
Unfortunately, all this country fun took its toll on Elizabeth. She went to school yesterday, but I had to go get her. Her allergies were all kinds of messed up. Her teacher called me and said, “Something is WRONG with Elizabeth.” She stayed at school about 45 minutes before calling me to come and get her. Three doses of Benadryl and a good night of sleep later, she is back to her old self.
After we were done there, we finally got on the road. We stopped and got supper at McDonald’s on the way. One potty stop later, we got the Clarksville about 9pm without any major drama, which is always a plus. We unloaded, and hung out for a few minutes before turning in for the night. We were all worn out!
The next morning, it was COLD!!!! Thankfully, I had packed some jeans and jackets for us. The girls, Grams, and I wanted to go out to a few stores. (Well, Grams and I wanted to go, we just took the girls with us. They were less than thrilled) Elizabeth needed some shorts, and we were able to find several pair for her. They are quite cute! She’s wearing a pair to school today, actually. We also picked up a few other things.
After we were done, we went home for lunch. Then, we headed up to Cheatam Dam. None of us had been there in YEARS, and the girls had never been. It was too cold to be out of the car for very long, but we enjoyed driving around and looking. It was different stuff.
It was VERY windy, and the water was very choppy. Obviously, some people were not deterred by this...
It was neat to see how much deeper the water was on one side of the dam vs the other.
By the way, they mean this...
We hung out for a while, and then we went to Cici’s for supper. No trip to Grams and Granddaddy’s house is complete without this. Shrek 3 was playing, so the kids were occupied while we ate. ;) After that, we wandered around Lowe’s for a while. I do love Lowes. It’s one of my favorite stores. Elizabeth likes it, too. She likes to look at the kitchens and the appliances. Like mother, like daughter.
Then we headed back to the house. The girls played legos, and Mama and I played Skipbo. We also taught Elizabeth how to play. We had worn Daddy out, so he just rested. Heheh :) Then, we turned in.
The next morning, we headed to Erin. I like to take the girls to my grandparent’s home place, and Daddy had some boards that I wanted to build a storage unit for Amy’s room. We played over there for quite a while and had a good time.
Then, we headed back home. We really had SUCH a good time. We did have to stop at Taco Bell and get beans for Amy on the way, though. You know that girl and her beans!!!
Unfortunately, all this country fun took its toll on Elizabeth. She went to school yesterday, but I had to go get her. Her allergies were all kinds of messed up. Her teacher called me and said, “Something is WRONG with Elizabeth.” She stayed at school about 45 minutes before calling me to come and get her. Three doses of Benadryl and a good night of sleep later, she is back to her old self.
Saturday, April 9, 2011
I.C.U. ( as in "I see you") :)
So, yesterday was the day we had been waiting for (with a combination of hope and dread) since January.
Amy and I actually left Thursday night. Our appt was 730 on Friday, and I just had no desire to fight Memphis traffic, (plus I had a free night from hotels.com) so we went down early. I found a hotel about two minutes from the hotel. We found out on Wednesday that we could have stayed at the FedEx house, but we already had reservations, so we just went ahead. From the pics I saw of the FedEx house, I might have never been able to get Amy to leave, so it was probably a good thing.
The hotel we stay at was probably the smallest hotel I have even stayed in…maybe 30 rooms? It was very trendy. My only problem was no vending machines. No quite so cool when you want to give your kid midnight snack because you know they won’t be able to eat breakfast the next morning, but we survived.
Neither of us slept very well. I just got a king bed because I knew Amy would sleep with me. She told me, “ You are on the Mama side and I am on the Daddy side. I will be Daddy.” Then she rolled over and pretended to snore like a buzz saw. HAHAHAHA! She also woke me up at three am by barking in my ear. Ah, adventures….
Friday morning, we got up and got ready and headed to LeBohnner. I could see it just fine, but had a difficult time finding parking. Then, we had to navigate the hospital maze to find the waiting room. When we finally made it, we were only about 15 minutes early instead of the 30 I had thought. It was fine, though. We waited out there until about 8, and then they took us back to pre-op. On the way, we stopped in Bunny Lane for Amy to pick out a toy to be hers and she chose a puppy that rolls on the ground and giggles. Everyone there was WONDERFUL. So nice and patient. However, no amount of wonderful could make up for the HELL of putting drops in Amy’s eyes. We finally ended up with me lying on her and two nurses putting them in. Three times. For a total of seven drops in each eye. :( After that she was pretty gun shy, and even testing her pulse was met with resistance, but we made it. She finally calmed down, and then a patient life specialist (Lauren) came to see us. She was SO SWEET. She talked to Amy about the anesthesia (but never called it that) and how they would do it, and that she could have popsicles after she opened her eyes. Amy really liked her, and so did I. She brought Amy some pictures to color. Amy was pretty much exhausted at this point (about 915). I tried to get her to just go to sleep, but of course she would have nothing to do with that. Lauren came and took us to the playroom about 930, and we waited there until 10 when they came to get her for the procedure. (Only 15 minutes late, I think that’s pretty good.)
Amy took this picture. :)
Waiting Room
All ready!
In the playroom
I got to walk with her for a bit, and then she went with the nurses and I went back to the waiting room. She was bouncing and happy as she walked with them, so I felt very good about it.
I went down and got a snack, and made a few phone calls. I sat in the waiting room and read for a while. There was a lady on a couch beside me. She had her shoes off and her nasty crusty feet sticking out from under a blanket and her head covered up. She was snoring so loud that she eventually woke herself up. When she finally roused up, her mom yells across the room, “They done took her (sleeping nasty foot woman’s baby) back there.” SNFW went back to sleep. OH. MY. Is all I have to say about that.
Around 1130, they took me to a little room to talk to the dr. It was Dr I. We talked for quite a while. He said that he still thinks she has Malattia Levantinse (Doyne’s honeycomb macular dystrophy), but we will not be 100% until the blood work comes back (they drew blood while she was sleeping, thank goodness). If it is NOT this, they will test for other genetic disorders. At any rate, these tests will serve as a baseline for her in the future. If it IS this, she will be the youngest recorded case in the world. Yeah. :( Still no for sure treatment plan; and treatment may not even be needed. They will both be examined again in six months, and tests repeated in two years. If there is no change, we will maintain. If there is a change, we will go from there. Yeah, I know frustrates me, too, but I TRULY trust Dr. I and what he is telling us. There is not a “quick fix” for this. You cannot take a pill for it, nor have surgery to fix it. We are at a definite disadvantage in that we have no access to Jason’s paternal relatives, as they are all deceased, and the tests that Jason had as a child were not sophisticated enough to see this. The fact that Dr I keeps saying over and over “I can’t believe they can see as well as they can,” both comforts and concerns me. The ONLY immediate vision problem that Amy had is her night vision is slightly impaired. Well, you know what, so is mine, so that may not even be related to this.
After our meeting, he told me Amy still had a while longer. I went back out to the waiting room. He came back out again a bit later. He had mentioned donating some of Amy’s blood sample to a DNA bank, and needed to get my consent for that. Basically, I said that they can do whatever they want with the blood sample (already drawn) and compare that to her test results in any way they want, and it will be in no way associated with Amy, unless they find something that could help her. Of course, I did it. If it does not help her, hopefully it will help some other little child.
Finally, about 1200, they came and got me. Amy was out. She was very distressed when I got back to recovery, thrashing and talking out of her head. The nurse repeatedly assured me that it was TOTALLY normal. She finally did calm down and fell into a good sleep. We ended up having to wake her up with promises of popsicles. :) They took out her IV (such a tiny little straw like thing! Nothing like a grown up IV. It didn’t even hurt her when they took it out) She went potty, and ate her popsicle, and we got her dressed. I went and got the car, and the nurse brought her down in the trademark red wagon. We loaded her up, and we were on our way!
She did fine the rest of the way (and we had to stop for beans at Taco Bell on the way home). She was distressed last night b/c she had the little heart monitor things on her and we had to soak in the tub to get them off. By bed time, she was VERY tired. She slept well, and seems to be totally back to normal this morning.
So, the answer we got is that we still don’t have an answer. We are a step closer, but not there yet. As we were driving down there, I was really thinking about all we have to thankful for. I have a friend with a daughter Amy’s age who has already survived leukemia. Another friend who just donated part of her liver to save her infant son’s life. We have to take fish oil tablets at dinner. Amy has sight, and is in no immediate danger of losing it. In fact, her vision is better than mine. God placed us where we are for a reason, and we will ALL be fine. If a cure is needed, there WILL be one, in time. Until then, we will keep our faith in the Giver of Sight, the Giver of LIFE.
Amy and I actually left Thursday night. Our appt was 730 on Friday, and I just had no desire to fight Memphis traffic, (plus I had a free night from hotels.com) so we went down early. I found a hotel about two minutes from the hotel. We found out on Wednesday that we could have stayed at the FedEx house, but we already had reservations, so we just went ahead. From the pics I saw of the FedEx house, I might have never been able to get Amy to leave, so it was probably a good thing.
The hotel we stay at was probably the smallest hotel I have even stayed in…maybe 30 rooms? It was very trendy. My only problem was no vending machines. No quite so cool when you want to give your kid midnight snack because you know they won’t be able to eat breakfast the next morning, but we survived.
Friday morning, we got up and got ready and headed to LeBohnner. I could see it just fine, but had a difficult time finding parking. Then, we had to navigate the hospital maze to find the waiting room. When we finally made it, we were only about 15 minutes early instead of the 30 I had thought. It was fine, though. We waited out there until about 8, and then they took us back to pre-op. On the way, we stopped in Bunny Lane for Amy to pick out a toy to be hers and she chose a puppy that rolls on the ground and giggles. Everyone there was WONDERFUL. So nice and patient. However, no amount of wonderful could make up for the HELL of putting drops in Amy’s eyes. We finally ended up with me lying on her and two nurses putting them in. Three times. For a total of seven drops in each eye. :( After that she was pretty gun shy, and even testing her pulse was met with resistance, but we made it. She finally calmed down, and then a patient life specialist (Lauren) came to see us. She was SO SWEET. She talked to Amy about the anesthesia (but never called it that) and how they would do it, and that she could have popsicles after she opened her eyes. Amy really liked her, and so did I. She brought Amy some pictures to color. Amy was pretty much exhausted at this point (about 915). I tried to get her to just go to sleep, but of course she would have nothing to do with that. Lauren came and took us to the playroom about 930, and we waited there until 10 when they came to get her for the procedure. (Only 15 minutes late, I think that’s pretty good.)
Amy took this picture. :)
Waiting Room
All ready!
In the playroom
I got to walk with her for a bit, and then she went with the nurses and I went back to the waiting room. She was bouncing and happy as she walked with them, so I felt very good about it.
I went down and got a snack, and made a few phone calls. I sat in the waiting room and read for a while. There was a lady on a couch beside me. She had her shoes off and her nasty crusty feet sticking out from under a blanket and her head covered up. She was snoring so loud that she eventually woke herself up. When she finally roused up, her mom yells across the room, “They done took her (sleeping nasty foot woman’s baby) back there.” SNFW went back to sleep. OH. MY. Is all I have to say about that.
Around 1130, they took me to a little room to talk to the dr. It was Dr I. We talked for quite a while. He said that he still thinks she has Malattia Levantinse (Doyne’s honeycomb macular dystrophy), but we will not be 100% until the blood work comes back (they drew blood while she was sleeping, thank goodness). If it is NOT this, they will test for other genetic disorders. At any rate, these tests will serve as a baseline for her in the future. If it IS this, she will be the youngest recorded case in the world. Yeah. :( Still no for sure treatment plan; and treatment may not even be needed. They will both be examined again in six months, and tests repeated in two years. If there is no change, we will maintain. If there is a change, we will go from there. Yeah, I know frustrates me, too, but I TRULY trust Dr. I and what he is telling us. There is not a “quick fix” for this. You cannot take a pill for it, nor have surgery to fix it. We are at a definite disadvantage in that we have no access to Jason’s paternal relatives, as they are all deceased, and the tests that Jason had as a child were not sophisticated enough to see this. The fact that Dr I keeps saying over and over “I can’t believe they can see as well as they can,” both comforts and concerns me. The ONLY immediate vision problem that Amy had is her night vision is slightly impaired. Well, you know what, so is mine, so that may not even be related to this.
After our meeting, he told me Amy still had a while longer. I went back out to the waiting room. He came back out again a bit later. He had mentioned donating some of Amy’s blood sample to a DNA bank, and needed to get my consent for that. Basically, I said that they can do whatever they want with the blood sample (already drawn) and compare that to her test results in any way they want, and it will be in no way associated with Amy, unless they find something that could help her. Of course, I did it. If it does not help her, hopefully it will help some other little child.
Finally, about 1200, they came and got me. Amy was out. She was very distressed when I got back to recovery, thrashing and talking out of her head. The nurse repeatedly assured me that it was TOTALLY normal. She finally did calm down and fell into a good sleep. We ended up having to wake her up with promises of popsicles. :) They took out her IV (such a tiny little straw like thing! Nothing like a grown up IV. It didn’t even hurt her when they took it out) She went potty, and ate her popsicle, and we got her dressed. I went and got the car, and the nurse brought her down in the trademark red wagon. We loaded her up, and we were on our way!
She did fine the rest of the way (and we had to stop for beans at Taco Bell on the way home). She was distressed last night b/c she had the little heart monitor things on her and we had to soak in the tub to get them off. By bed time, she was VERY tired. She slept well, and seems to be totally back to normal this morning.
So, the answer we got is that we still don’t have an answer. We are a step closer, but not there yet. As we were driving down there, I was really thinking about all we have to thankful for. I have a friend with a daughter Amy’s age who has already survived leukemia. Another friend who just donated part of her liver to save her infant son’s life. We have to take fish oil tablets at dinner. Amy has sight, and is in no immediate danger of losing it. In fact, her vision is better than mine. God placed us where we are for a reason, and we will ALL be fine. If a cure is needed, there WILL be one, in time. Until then, we will keep our faith in the Giver of Sight, the Giver of LIFE.
Tuesday, April 5, 2011
New Sink!!!
Yeah!!!
(Yes, we put the other handle back on!)
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