Casey has been feeling much better. She was back to causing trouble all last week. There is not a lot to report. She is still working on few play dates.
Last week we were able to get Casey back on Nutren Jr. She was on this food for over a year, but when she got sick back in November they changed her to Nutramigen. The Nutren is so much better. Her tube still leaks, but it does not seem to be quite as bad. I hope that on the new food that we will be able to finally get some weight back on.
We also changed diapers last week. We had been on Pampers forever, then around her 4th birthday we started to get diaper supplies through a company that provided Huggies. The Huggies were fine but when this months order arrived it was not what we expected. I called the company right away to be sure there was not some sort of mix up. They were not able to renew the Huggies contract and had signed on with Cuties. The person I spoke with explained a lot of testing and quality control that they had worked out in previous weeks. I had to agree, on touch the Cuties felt soft and looked fine. When we tried them out they seem to fit really well too. All in all the Cuties brand seems to be pretty good. We have only used them for a few days so far. I think as long as we never have to go back to the awful Curity diapers we should be fine.
I think that is about it for now. Hopefully we will be able to work in some fun stuff over the next few weeks. We hope to have some updates on Make-A-Wish soon too. Until then, we hope everyone is well.
Monday, June 28, 2010
Tuesday, June 22, 2010
Miller - So Much More Than a Dog
15 years ago, while still living with my parents, I brought home a little white toy poodle. The second I saw her I knew I had to take her home with me. It probably would have been best to get permission to bring home a dog, but I took the risk. After about 10 minutes with her my whole family agreed that she belonged with us.Miller was so full of life. She loved to go for car rides. Anything with water made her happy. She used to find the plants that my mom recently watered and play with the run off water until she managed to splash it all out on the floor. Her favorite thing though was playing ball. She could play ball all day. We never even taught her, she just did it. She would bring the ball back and drop it right in front of you. If you told her "I can't reach it" she would get it and move it closer or even put it in your lap. If you still did not throw it for her she would bark at you until you did.
I used to come home from work and she would great me by dropping the ball down the stairs as I was coming in and up. Miller was one of kind. Everyone that knew her loved her. Even people that don't like dogs could not help but love Miller.
When Miller was about 5 I started working a lot and felt that she was not getting enough attention. After thinking long and hard I knew the best thing I could do would be to give her to my mom. My mom always loved Miller. She had more time than I did and I knew Miller would get the love and attention that she deserved.
It was sad, and I missed her like crazy but I knew I made the right decision. Over the past 10 years my mom and Miller have been inseparable. Miller was less like my mom's dog and more like her side kick or little furry shadow.
My mom took Miller sailing with her often. Some of Miller's favorite times were spent on the boat with my mom. She even had her own little life jacket for rough waters.
My entire family has loved Miller since she joined us 15 years ago. She was so much more than a dog to all of us. There will never be another Miller.
Today Miller went in for dental surgery. She made it through the surgery, but passed away earlier this evening. She went quick and did not suffer. My mom was with her so she was not alone.
We will all miss Miller very much. I can't imagine life with out her. The 15 years she was here with us will always be treasured. Miller, we will never forget you. You will be with us always. I hope you are somewhere playing ball now. Good bye, Miller. Thanks for all of the wonderful memories.
Thursday, June 17, 2010
Long Week
Casey has had a rough week. She get a nasty stomach bug last week. Just as she was getting over that she got an eye infection. She is still on drops for her eye, but it looks much better. I think she is feeling better.
There are a few things we have been working on that have updates. The feeder seat I already mentioned is back ordered. As of now we have an ETA of August. The speech therapy we are waiting on we were told will also be August. School will be starting back up in August too. I think August may be a bit busy around here. Good busy, but busy. Depending on Casey's wish that may end up happening in August as well. We are hoping to hear back this month on what and when she will be doing for her wish. I am sure what ever it is it will be great.
That's about it for now. We hope everyone is doing well.
There are a few things we have been working on that have updates. The feeder seat I already mentioned is back ordered. As of now we have an ETA of August. The speech therapy we are waiting on we were told will also be August. School will be starting back up in August too. I think August may be a bit busy around here. Good busy, but busy. Depending on Casey's wish that may end up happening in August as well. We are hoping to hear back this month on what and when she will be doing for her wish. I am sure what ever it is it will be great.
That's about it for now. We hope everyone is doing well.
Tuesday, June 08, 2010
Fun Day
Casey spent the morning doing one of her favorite things - movies! After lunch we got her ready for her usual afternoon therapy at Dell. We got ready a little early and decided to go up and visit some of her friends. It worked out great. She got to see lots of her nurses, CAs, RTs, and some of her doctors. They were all glad she was there "just visiting".
I have been so excited that we finally got Casey's feeder seat approved and ordered. I got a call this morning to tell me that it is back ordered and my expected arrival date is not until 8/6. They said that a few people have been getting them early, but they can not promise. I really hope that chair gets here soon. We have lots of plans for how to use it.
Casey has a friend coming over Friday. She can't wait. She loves play dates.
I have been so excited that we finally got Casey's feeder seat approved and ordered. I got a call this morning to tell me that it is back ordered and my expected arrival date is not until 8/6. They said that a few people have been getting them early, but they can not promise. I really hope that chair gets here soon. We have lots of plans for how to use it.
Casey has a friend coming over Friday. She can't wait. She loves play dates.
Monday, June 07, 2010
Latest Updates
We are making some progress with Casey's seizures. They started her on Kepra last week. Apparently a lot of kids are on this drug. She has been doing pretty well with it. They started her on a fairly low dose. Her twitches were noticeably less with in a few days. They are not fully gone though so today they had us go up just a little in the dose. I think after some fine tuning we should have them back under control.We have not talked with the doctor yet, but her nurse said that they did not find anything in the MRI. That is pretty much what we expected.
Today was a crazy day. About a month ago we found 3 scorpions in the house (2 pretty big ones) in just over a week. We had someone come out and spray and we thought things were better. Out of no where today Casey's nurse jumped up off th
e couch. Somehow a scorpion had crawled up her pants and then when she saw it and pushed it away it stung her. I really hate bugs. Luckily it was not too bad. She was pushing him away so he was not able really latch on (thank goodness). He ran under the couch before we could get him though.Tim came down from his office when he heard all the commotion. Casey had been sitting on her bean bag on the floor watching a movie. We grabbed her up real quick and got her to the bedroom. After we patched up her nurse's hand and got Casey and her nurse set up in the bedroom Tim and I tore the living room apart. Finally after hunting a bit we found him. He was a big one too.
We are working on getting Casey into a few extra therapies up at Dell over the summer so she does not regress. Hopefully we can get some stuff set up in the next couple of weeks. She should be getting a new feeder seat soon to use at home.
We are setting up as many fun activities over the summer as we can (play dates, swimming, movies, etc). The pictures I posted are from one of Casey's PT workout up at Dell. They were just too cute not to share.
I think that is about it for now. As always, we hope everyone is doing well.
Thursday, June 03, 2010
Between the Lines
We understand there are a few misconceptions based on the content we post. I want to take a minute to clear up a few things.
First I would like to explain how this content makes it to the site. From day one Tim and I decided that the only way we were going to be able to get through this is to focus on the positives. Some days are a lot harder than others. We are more than aware of the severity of the situation - and not delusional in any way. Instead of dwelling on every setback, bump, hurdle, or whatever you choose to call it, we decided that we would acknowledge the challenge then move forward. We have put all of our energy into celebrating EVERY victory, no matter how small. We cherish each moment we get to share with Casey. When we post to this site you have to keep that in mind.
In life with a special needs child there are always challenges. If you think of life as a road you can say that life with a special needs child would be full of bumps, potholes, hills and mountains. That road may not even be paved. Life with a healthy child is more like a major freeway. Smooth with a few potholes, hills and maybe even a mountain or two. When driving down a freeway, if you hit a bump or pothole you notice it. When driving down a dirt road there are so many bumps and potholes you probably start to just drive through them, and only notice when you hit a really bad patch. Sure, when you get to your destination you are aware that you traveled a bumpy road. But you travel it so often that when you are asked how the trip was all you can think to say is "Fine, nothing eventful." Or you may even go the other direction, as we often do, and point out the positives. "Great, the weather was nice. We were even able to tune into our favorite radio station most of the way." If we don't spend time talking about the bumps, it does not mean that the road was paved and smooth. You might say we have been off road for most of our travels.
When we were in the NICU with Casey (back in the very beginning), Tim and I really had no choice other than to adopt the positive approach. The doctors actually pulled me aside and where legitimately concerned that I was delusional for being so positive. I explained to them, the same as I am explaining to you all now, if I can't hold on to the positives, I won't make it. I had to explain to them that yes I know my child is very sick. I had to explain to them that I know I could (and still can) lose her at any moment on any day. I had to explain that I know that my daughter will only get worse over time. And I had to tell them when the time comes I will somehow recognize it and accept it. These were not things I wanted to say, but this was/is our reality. I know it, and Tim knows it. But we don't want to waste the time we have with Casey dwelling on those things. We want to make every moment count and as wonderful and positive for Casey as we possibly can.
Just as we focus on enjoying and celebrating life with Casey, we want others to do the same. We don't want people to hear her story and feel sad or pity for her or us, or "glad they aren't us" (yes, that's a quote). We want people to hear about her and feel proud, and lucky to know her. We want people to see her for the amazing fighter that she is. And we want people to see all of her achievements and help her celebrate them.
I know sometimes reading this site you may get the impression that Casey is doing great. And she IS, but it's all relative. Maybe I should have posted this explanation earlier. We hold hope that she has a long and wonderful life. We feel so incredibly blessed to have her in our lives. She is the most amazing person I have ever known. Our hope is that everyone in her life knows how lucky they are to be part of her amazing journey.
Also, I need to explain Make-A-Wish. We were approached about Make-A-Wish, we did not go looking for them. The medical field has come so far that a lot of families do not get "you have exactly this much time" anymore. Some do, but many are labeled with "Life Limiting" instead of "Terminal". Make-A-Wish supports both types of cases. To be part of Make-A-Wish, a child's doctor sends medical details showing the child is in one of these categories.
Life limiting is a term most people may not know. I am breaking all of our rules to actually go into this right now. "Life limiting" or "medically fragile" or "complex chronic illnesses" are terms that are often used with severe cases. These are terms that are used when discussing patients with consistently deteriorating medical conditions. What does this mean? Well, in short it means that every day Casey is getting worse, and both her quality and quantity of life is limited by her conditions.
We focus on the positives, and we post the positives. If you read closely (between the lines) you will see the positives are things like personality (likes, attitude, etc), learning (switches, cries, gestures/decisions, etc), and minor medical (got over a cold w/o hospitalization, avoided aspiration during MRI, etc). The major conditions - the areas that we and the current medical community have no control over - are getting worse. I don't want to get into a lot of details here (I can't), but I will try to explain this a little.
Each time Casey is sick, each time she is hospitalized, even when she grows, she gets worse. Her pulmonary, GI and physical development are deteriorating (sometimes slowly, sometimes quickly) and there is nothing we can do to stop them. Even when she gets out of the hospital or gets over a specific illness, she is not able to quite make it all the way back to where she was before. Eventually she will no longer be able to breath and/or eat. Every time we go to a doctor appointment they point out to me that she is worse than the time before. I don't post those details. When I say an appointment went well, it means the doctor did not push to admit Casey to the hospital or hospice care. It means that Casey is doing as well as can be expected for her condition.
If Casey's doctors did not think that she was in the high risk category she would not be eligible for Make-A-Wish. If they thought she had lots of time they would have waited. Make-A-Wish knows that their kids have good and bad times. When a child gets into the program they move as fast as they can, because they want the child to be in a "good time" in order to fully enjoy their wish. Also, regardless of life limiting or terminal, the truth is that any of these kids can go at anytime. That is not the plan, but it is a real risk and Make-A-Wish knows this. For everyone that has been reading Casey's blog and is confused "I thought she was doing great, why is she getting a wish?", I hope this helps explain that.
We are so thankful to have so many people follow Casey's story. There are more people pulling for her in good and bad times than we could have ever hoped for or imagined. We are sorry if our postings have mislead any of you. I hope that with this explanation you can understand where we are coming from.
First I would like to explain how this content makes it to the site. From day one Tim and I decided that the only way we were going to be able to get through this is to focus on the positives. Some days are a lot harder than others. We are more than aware of the severity of the situation - and not delusional in any way. Instead of dwelling on every setback, bump, hurdle, or whatever you choose to call it, we decided that we would acknowledge the challenge then move forward. We have put all of our energy into celebrating EVERY victory, no matter how small. We cherish each moment we get to share with Casey. When we post to this site you have to keep that in mind.
In life with a special needs child there are always challenges. If you think of life as a road you can say that life with a special needs child would be full of bumps, potholes, hills and mountains. That road may not even be paved. Life with a healthy child is more like a major freeway. Smooth with a few potholes, hills and maybe even a mountain or two. When driving down a freeway, if you hit a bump or pothole you notice it. When driving down a dirt road there are so many bumps and potholes you probably start to just drive through them, and only notice when you hit a really bad patch. Sure, when you get to your destination you are aware that you traveled a bumpy road. But you travel it so often that when you are asked how the trip was all you can think to say is "Fine, nothing eventful." Or you may even go the other direction, as we often do, and point out the positives. "Great, the weather was nice. We were even able to tune into our favorite radio station most of the way." If we don't spend time talking about the bumps, it does not mean that the road was paved and smooth. You might say we have been off road for most of our travels.
When we were in the NICU with Casey (back in the very beginning), Tim and I really had no choice other than to adopt the positive approach. The doctors actually pulled me aside and where legitimately concerned that I was delusional for being so positive. I explained to them, the same as I am explaining to you all now, if I can't hold on to the positives, I won't make it. I had to explain to them that yes I know my child is very sick. I had to explain to them that I know I could (and still can) lose her at any moment on any day. I had to explain that I know that my daughter will only get worse over time. And I had to tell them when the time comes I will somehow recognize it and accept it. These were not things I wanted to say, but this was/is our reality. I know it, and Tim knows it. But we don't want to waste the time we have with Casey dwelling on those things. We want to make every moment count and as wonderful and positive for Casey as we possibly can.
Just as we focus on enjoying and celebrating life with Casey, we want others to do the same. We don't want people to hear her story and feel sad or pity for her or us, or "glad they aren't us" (yes, that's a quote). We want people to hear about her and feel proud, and lucky to know her. We want people to see her for the amazing fighter that she is. And we want people to see all of her achievements and help her celebrate them.
I know sometimes reading this site you may get the impression that Casey is doing great. And she IS, but it's all relative. Maybe I should have posted this explanation earlier. We hold hope that she has a long and wonderful life. We feel so incredibly blessed to have her in our lives. She is the most amazing person I have ever known. Our hope is that everyone in her life knows how lucky they are to be part of her amazing journey.
Also, I need to explain Make-A-Wish. We were approached about Make-A-Wish, we did not go looking for them. The medical field has come so far that a lot of families do not get "you have exactly this much time" anymore. Some do, but many are labeled with "Life Limiting" instead of "Terminal". Make-A-Wish supports both types of cases. To be part of Make-A-Wish, a child's doctor sends medical details showing the child is in one of these categories.
Life limiting is a term most people may not know. I am breaking all of our rules to actually go into this right now. "Life limiting" or "medically fragile" or "complex chronic illnesses" are terms that are often used with severe cases. These are terms that are used when discussing patients with consistently deteriorating medical conditions. What does this mean? Well, in short it means that every day Casey is getting worse, and both her quality and quantity of life is limited by her conditions.
We focus on the positives, and we post the positives. If you read closely (between the lines) you will see the positives are things like personality (likes, attitude, etc), learning (switches, cries, gestures/decisions, etc), and minor medical (got over a cold w/o hospitalization, avoided aspiration during MRI, etc). The major conditions - the areas that we and the current medical community have no control over - are getting worse. I don't want to get into a lot of details here (I can't), but I will try to explain this a little.
Each time Casey is sick, each time she is hospitalized, even when she grows, she gets worse. Her pulmonary, GI and physical development are deteriorating (sometimes slowly, sometimes quickly) and there is nothing we can do to stop them. Even when she gets out of the hospital or gets over a specific illness, she is not able to quite make it all the way back to where she was before. Eventually she will no longer be able to breath and/or eat. Every time we go to a doctor appointment they point out to me that she is worse than the time before. I don't post those details. When I say an appointment went well, it means the doctor did not push to admit Casey to the hospital or hospice care. It means that Casey is doing as well as can be expected for her condition.
If Casey's doctors did not think that she was in the high risk category she would not be eligible for Make-A-Wish. If they thought she had lots of time they would have waited. Make-A-Wish knows that their kids have good and bad times. When a child gets into the program they move as fast as they can, because they want the child to be in a "good time" in order to fully enjoy their wish. Also, regardless of life limiting or terminal, the truth is that any of these kids can go at anytime. That is not the plan, but it is a real risk and Make-A-Wish knows this. For everyone that has been reading Casey's blog and is confused "I thought she was doing great, why is she getting a wish?", I hope this helps explain that.
We are so thankful to have so many people follow Casey's story. There are more people pulling for her in good and bad times than we could have ever hoped for or imagined. We are sorry if our postings have mislead any of you. I hope that with this explanation you can understand where we are coming from.
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