Happy Birthday Hallie!

Can you believe Miss Hallie is 4? I feel like she should be about 24 and me about 60, with what we have fit into the last 4 years. Despite all of her medical problems, this little girl of mine cracks me up. We flew to Cincinnati the day after her birthday. We traveled all day and were on 3 different flights and Hallie would get so wrapped up in her own little world that I would look across the aisle to find Derrick with his headphones on and Hallie singing very loudly, "what time is it? It's ssssummertime!" She did that for about 10 minutes before I finally had to poke Derrick to get him to quiet her down. The last few days she has woken up in the funniest moods. She is just goofy. Normally, she is my first one up and not usually very happy about it, which makes me not so happy. She has just woken up laughing and gigglin, putting appendages in the wrong parts of her clothing and thinking life is just great. She even put her coat on backwards yesterday and thought she was hysterical. What a child.

Saturday, we took Hallie to Boomtown with a few of her friends. It has a family fun center there and she had a great time. I will post pictures as soon as I find what suitcase I put the camera cable in. She was on the carousel and saw Santa Claus sitting, waiting for kids. She is sure that he came just for her birthday party. They let her get in a wind tunnel and gather tickets. She got to choose a friend to go with her and I prepped them on how to get the most tickets. We even watched another kid do it. Derrick took some video, so I will post it, but it was so funny! She would gather arm loads of tickets and shove them down her shirt and then they would promptly fall out the bottom. Or she and her friend would grab a bunch and literally let them go and watch them fall. It was pretty funny.

Sunday was her actual birthday and she was so excited to go to church. They sang to her in primary and she just beamed. She thought it was so cool! Then she got to go to the bishop's office and he gave her some cookies, which was awesome in her book. I got a few phone calls last week from some young women that our in our church-- not necessarily our congregation, but LDS. The first one was a junior in high school and had heard about Hallie through some of her friends that helped out at our yard sale. She was so touched by Hallie's story that she made an I spy quilt for her to entertain her in the hospital. It has a bunch of different fabrics and a list of things to find in them. Wendy brought it to her before church and Hallie thought that she was pretty special. We of course had to bring it on the trip with us and she is planning on taking it to the hospital with her.

Anne is in our ward and she is 15. She wrote and illustrated this book for Hallie. It is called Hallie the Great. She brought it over Sunday night and it is pretty incredible. How would it be to have so much talent! It is all about Hallie's life and different things that they have heard Hallie say or do that impressed them. It capped off a great birthday.

I am continually amazed at Hallie. There is so much about her that I take for granted because I deal with it every day. Yesterday, my mother-in-law and I took Hallie with us to run a few errands. As we were driving, Hallie told me that she was going to throw up. I scrambled and came up with a shopping bag and shoved it at her. Hallie proceeded to throw up (she hadn't pooped all day, so everything had no where to go), I cleaned her up (she got just a little bit on her sweater) and went to get out of the car. Vicki looked at me and asked what we did now. I told her that Hallie was good to go now and would be feeling much better and we could continue. 20 minutes later, Hallie was back up to full speed and hasn't slowed down since. Vicki was very traumatized and won't take Hallie anywhere on her own now. Derrick is with the two of them grabbing the last few things for dinner tomorrow. Hallie throws up 2-3 times a week, so I just take it for granted how fast she bounces back. She loves to be involved in her medicine and wants to push the plunger on the syringes and empty her albuterol into her nebulizer (she has RSV, but is doing great with it-- I think we might avoid a hospitalization for it!). We have been out and about at night a few times since we got here, so we have mixed up her TPN early and just hooked her up while we were out. She pauses long enough for us to get her hooked up, grabs her back pack and takes off running.

Hallie is the first to say thank you, the first to say I love you, the first to kiss you if you are sad. She told my mom that all of her Christmas presents were just wonderful. She takes life in stride and I have to remind myself that I need to do the same. She kept asking if she was going to get a wheelchair at the airport and eveyone just looked at her funny. I laughed and told her not on the way out, but maybe on the way home, since she will have just gotten out of the hospital. She is thrilled with the concept. If only we could all be so happy with the challenges life brings our way!

4 years ago, my world fell apart. I had no clue that anything was wrong with my baby and when she was born, our lives were changed forever. It has been the hardest 4 years of my life. I am physically, mentally, and emotionally exhausted each and every day. But the joy that she brings into our lives far out weighs the hardships. I love you, Miss Hallie! Thank you for teaching me how to be a better person!

Answers, hopefully...

I have been working for 3 months to get Hallie into the GI department at Cincinnati Children's. They have one of the best departments in the nation for her problems. We really have felt strongly that they were our best chance at finding answers for her. I have jumped through so many hoops to make this happen, I am a little dizzy! First, we had to sign authorization for them to get Hallie's medical records from ALL of her doctors. Then they had to request them. Then after a month of me calling every day to see which records they had gotten and which ones I still needed to follow up with, they decided that they didn't have any of her x-rays or scans. Luckily, I found a lady sympathetic to my cause (I think she could tell I was on the verge of a nervous break down) because she overnighted all of it to them for me. They finally had all they needed and it took Dr. Kaul the motility specialist that we were wanting to see over a week to review them and decide that he needed more help. Most motility issues stem from the large intestine, but Hallie's seem to stem from her small intestines. So he called in Dr. Mezoff, who reviewed her records and they made a tentative appointment of Dec 30 to see her together.

We booked flight because we knew if we waited much longer that we wouldn't be able to go. We had 2 foundations in town step forward and agree to pay for Hallie's and my flights since we are traveling back there for medical purposes. That proved to be a challenge in and of itself because my in-laws paid for Derrick and Carson to fly back. I couldn't figure out how to find a flight, call 3 different people and get it booked without us ending up on 3 separate flights! Finally, I called a travel agent and he was able to put tickets on a 24 hour hold and got us a better price than anything I had seen.

Of course, after we booked the tickets, Cinci's Children's decided to inform me that they wanted to admit her for 3 days for tests and they couldn't get her in for those until 2 days after we left. I told them we were leaving on the 4th and they said then we could come back in February--right. So, I called the travel agent and started to change our flight when Dr. Mezoff's nurse called and told me to hold off-- she was trying to switch us with another out of town patient that hadn't booked flight yet. Then she called back and said she couldn't switch us, but Hallie is being admitted on Jan 4 at 6:30 a.m. Derrick and Carson fly out of Columbus, 2 hours away, that morning at 8:00 a.m. So we get to do the divide and conquer that we have become so good at. My father in law is going up to Columbus with Derrick driving since Brad can't drive in the dark. He will take Tucker with him and drive back after, since it will be light out. Vicki, my mother-in-law is going to take Hallie and I to the hospital. Hallie will be put under general anesthesia and they will do an endoscopy as well as insert the wires for the manometry test. These wires will remain in for 24 hours, while the monitor the pressure her intestines exert on them as they are digesting food. She will hopefully be released that next afternoon and we will fly out the afternoon of the 6th. She was supposed to have a colonoscopy done while we are there, but htey have decided that because her colon is so small and short that the risk of puncturing it is too great. So she will go in on the 30th and have a barium enema done instead.

We are very hopeful that all of these tests will lead to answers. It will take them about a week to get results and they will just call us with them. We are anxious to get out there, anxious to meet with the doctors. We truly believe they are her best hope. It has been a long process to get the appointment set up, almost as long to figure out what to do with her home medical supplies (the Kentucky board of pharmeceuticals has granted permission for our company to ship the supplies directly to us out there), but in the end we are hopeful that we will at least have a direction to go with Hallie. Please keep her and her doctors in your prayers the next few weeks. She needs all of the help she can get!

My Birthday

I suppose I ought to update about some of the fun things in our lives lately. My birthday is November 29 and it typically falls right after Thanksgiving. It is always pretty low key since we are traveling to see family or have just gotten back. As a kid, my friends were always doing family things, so we would have a party a week before or after, but it was usually really laid back. Last year I spent my 30th birthday packing suticases and making arrangements to head back to Salt Lake to be with my grandpa. We went to dinner with my brother and his family as they were driving back through from California, which was fun, but we all went to bed early so that we could head out at 3:30. It wasn't such a fabulous birthday or a great way to celebrate turning 30, but hey, that seems to be my life.

To be honest, I wasn't expecting much this year because money is so tight. All I wanted was for Derrick to help the kids do a few small things for me so that we could teach them how to celebrate birthdays. What I got was so much more!

A week before my birthday, Derrick came back from shopping with the kids and gave me my birthday presents early. He was heading to New Orleans the day after my birthday, so he wanted to make sure that I got a chance to use it. He gave me a bunch of bath stuff and some slippers and a sweatshirt. I think he really just wanted me to know that he put a little thought and effort into it and finished his shopping before the day of.

Derrick had the whole week of Thanksgiving off, which was really great. We got to spend time together as a family and it was very nice to have help with the kids. He had to run into the office that Monday and found a flyer about a Jodee Messina concert that was free to people in his office. He thought it sounded fun, but it was on a Sunday and I didn't want to go on a Sunday. He called anyways and pulled a few strings and got us tickets for Friday night instead. We had swapped baby-sitting with some friends, so instead of a movie, we planned on going to the concert. A few days later, he saw an ad on facebook for the Transiberian Orchestra. I told him I had always wanted to go to it. I didn't think anything else about it until I got back from picking up a few things that we needed for Thanksgiving. When I got back, he had this big grin on his face and asked if I could find a babysitter for Friday afternoon-- he had pulled a few more strings and gotten tickets for us to go see them.

So, Friday, we had a babysitter come and watch the kids in the afternoon and we went to see the Transiberian Orchestra. We got to sit in a VIP box and everything. It was a pretty incredible show. The laser show, along with the music made for great entertainment. I went into the day thinking that I would like this show the best, based on what I had heard from friends.

However, I have to say the Jodee Messina show was my favorite. My friend went over and picked up my kids and gave Hallie her medicine. We grabbed a quick bite to eat then went to the concert. We had VIP seating, so they seated us 7 rows straight back from her. It was in the ballroom at the Atlantis, so it was a very small room to begin with. When she came out, she told us that she basically wanted us to feel like we were in her music room at home, hanging out with her band. We could make requests, ask questions, anything that we wanted. We got to hear the inspirations behind songs and why certain songs were her favorite. We really got to see her personality and it was a lot of fun. We even got to hear a song she had written that will be released in January.

My birthday was on a Sunday this year and Derrick let me sleep in. Well, I should say, he let me go back to sleep after I dealt with Hallie. The kids and he made breakfast for me (ham and cheese omelets), then we headed to church. After church, they made dinner with my favorites (or their version of it). We had rib eye steaks (Derrick's favorite cut right now, although I had told him I had been wanting a steak for a while), rice a roni (Carson was SURE this was my favorite), and strawberries (which really are my favorite). Derrick even got the kids ready for bed, including Hallie. All in all, it turned out to be one of my better birthdays, so thank you Derrick!

Out of Control

So, I know that I need to catch up on a lot of things on here. I need to blog about Thanksgiving, and my birthday, and my kids and so on, but for now I just need to vent. Then I can blog about the others and do them justice.

There is so much in my life that I don't have control over. I have no control over Hallie, her health, her doctors, where she may tak us. I have no control over how it effects my kids and the rest of my life. We just make the best out of things. I have no control over a lot of our finances. Yes, we can pay for our rent and utilities, although things have been a lot tighter since Derrick took a pay cut and I am very much looking forward to January, when supposedly his salary will revert to what it was before (cross your fingers on that one). Unfortunately, though, we have become largely dependent on the generosity of others to help pay for Hallie's expenses. That is very hard for me, becuase I can't predict what money will be coming in and I have had to basically turn it over to the Lord and pray that we will be able to meet her bills each month. I have learned to adapt and just go with the flow, but this weekend, I feel like my whole life is spinning completely and utterly out of control.

Two days ago, the owner of the house we are living in came to me and told me that he is having to short sell the house in order to avoid foreclosure. He was laid off 6 months ago and is having to sell his rental houses in hopes of being able to keep his house. We have a lease through the end of February, which he has to honor and he hopes that we choose to stay on month to month after that, until the house sells. He is even going to give us a discount on our rent.

What does this mean for us? We are moving-- hopefully as soon as possible. We of course can't move until our lease is up, but we are wanting to move as quickly as possible after that. In the mean time, the house will be on the market, so I have to have it available to show. They have to give me 24 hours notice before a showing, which I will most definitely be holding them to. I can set hours in which they can show the house-- nothing before 10:00 and after 7:30 and nothing on Sundays. Unfortunately, I have no control over who comes into my home, or what germs they may bring with them. I have told the realtor that every person that comes into my home must wear a mask and use hand sanitizer before entering. No ifs, ands, or buts about it. It is not up for negotiation. Hallie's health is too volatile to mess with like that. They are not allowed to enter her bathroom with all of her medical supplies. I don't have to leave the house when it is shown to make sure that my rules are abided by.

Other than that, I don't have much of a say. The owner is upset that I want to move as soon as I do-- hello! Who wants to live like that when there is absolutely no benefit to us! He said that if the house sits vacant for more than a month or so, he will lose it to foreclosure. I feel bad for the guy, I really do, but I have to look out for what is best for us. Not to mention that we will have our tax return to help pay for the moving expenses, so that we don't have to tighten our belts even more. The only thing I can control about this move is when it is going to happen-- if it will be on my terms, with us having the opportunity to find a house we really want to live in; or if it will be on the terms of the owner-- with him selling the house and giving us 30 days notice to move.

Derrick, is of course out of town. So I had to sit the kids down and tell them that we were moving. Hallie did and little dance and was so excited. She wants to know what color the new house is going to be. Carson cried and wanted to know if he was going to have to change schools, with tears in his eyes. Ideally, we would like to keep him in the same school, and us in the same ward at church to provide as much stability as possible, but I am realistic enough to know that we may have to change at least one, if not both.

I know that this could be a blessing in disguise. We could get a better house, or lower rent, or both. But for now, it is just completely overwhelming and makes me want to cry!

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