The Munro Family

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!

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!

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!

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!

This year, Thanksgiving has been very different at our house. Typically, we are with family, but this year we made the decision to stay at home since Hallie's medical expenses are so high and we have to travel a lot to get to her doctors. I wasn't really looking forward to it, to be honest. We were going to have dinner with some good friends, but they had a last minute change of plans, so it was just us. Derrick and I debated all the week before-- do we cook, or go out to eat? Honestly, by the time I bought everything, we could have gone out to eat, but then I wouldn't have had leftovers. I am still making meals with turkey!

I made Derrick promise that he would at least get out of his pj's and pretend that it was a nice holiday. He actually took Carson to play football that morning with our ward at church. Carson was the only kid that insisted on playing and even took his own flags. I guess the rest of the kids were playing soccer, but he wanted nothing to do with that. I wish I could say that I got to sleep in, but unfortunately, Tucker came and crawled in bed with me soon after the other boys left and Hallie started screaming that she had pooped all over her bed and could I come and clean it up?

That just started a not so fabulous morning. I had made a layered jello salad, starting the day before and for some reason, one of the layers didn't set up, so the whole thing turned to slosh. Derrick came back from football and in years past, he has always brought a newspaper home with him, so I didn't think to remind him. I guess I should have because he didn't grab one. We weren't planning on going shopping, but it is a tradition on Thanksgiving to pore over the ads. So, out Derrick went again. It was about 10:30 this time and he had to go to 6 stores before he found one. Plus, he forgot his cell phone, so he couldn't even call me to tell me how hard it was to find one, so by the time he got home, he was so cross!

I had rolls going, turkey in the oven, green bean casserole ready to cook, so we took a break to read the ads. There wasn't anything that we couldn't live without, although Radio Shack had a cell phone for $9.99 and I have been needing a new one since I couldn't hear people talk unless they were on speaker phone. I had been trying to hold out for one with internet capabilities, since when I am at the doctor and hospital, I am pretty isolated from the world. Derrick put aside his orneriness and went out to get it for me. I think he likes it better than I do-- a phone is a phone, right?

Anyways, I think that was the turning point of the day for us. We finished getting dinner ready, and sat down to eat. Carson was sure he didn't like turkey, Hallie was sure she didn't like potatoes, Tucker was sure we were trying to starve him, but Derrick and I really enjoyed dinner. Although, poor Carson asked me halfway through where the stuffing was. Oops! It was still in the box. Thanksgiving is a lot of work when it is just your own little family and your kids are all pretty young to be much help!

After dinner, we all took naps, which was fabulous. Afterwards, we played games and watched a few movies I had gotten at Red Box. In all, it was very different than what we were used to. It was kind of a hard holiday since last year my grandpa got spinal meningitis on Thanksgiving and the kids and I ended up racing back to Utah to see him before he passed away. He ended up hanging on for several months, but I think that in a way, our quiet Thanksgiving gave Derrick and I the opportunity to really reflect on our blessings, to see the Lord's hand in our lives. I look back at the blessing my grandfather was in my life and that is what we chose to focus on. If we ever have to stay here for Thanksgiving again, I might beg, cry, or plead, or all 3 to get family to come out to us, but for this year we enjoyed the peace and came out of it more prepared to face what may lay ahead of us.

So today has been full of great news from beginning to end! We received an email from Make a Wish this morning saying that Hallie has been approved for a wish, contingent upon her doctor signing the authorization form. We are so excited! She tells me she wants to go to Disney. She doesn't really care which one, but from what I have been told, Make a Wish has a complex at Disney World where we will be given a suite, they will stock our refrigerator, the characters she wants to meet will come there to see her. If we want to go to the beach, they will get us a car, put gas in it and pack us a picnic lunch. They are also well equipped to deal with all of the medical needs of their guests, which is extremely nice! I just got an email from her doctor saying that she had signed the form and we are good to go. Make a Wish will send out a couple of volunteers next week to talk to Hallie and start making plans. We are extremely excited! Now I just need to keep Carson from convincing her that her wish should be for a Nintendo DS!

My mother-in-law called today as well and told me that she has been working with a security guard from her work that also happens to be a security guard for the Cincinnati Bengals. They have been trying to get the team to donate some memorabilia that we can auction off to pay for some of Hallie's bills. Last night, he saw the clip of Hallie on the news and it really touched his heart. When he heard that we were coming out there to see the doctors, he got really excited. He is going to give us 10 tickets to the game for sure. Then he is concerned about Hallie being out in the cold and being exposed to everyone's germs, so he is going to try and get a box suite for us to use. If that doesn't work, he said he can always put us in the broadcast booth. Can you just picture it now-- "Ladies and Gentlemen (Carson I hate you! Hallie quit poking me!) What an experience that would be! He is also going to try and get us all access passes so that we can go on the field and meet the team after the game.

I can't tell who is more excited about what. Hallie is thrilled about Disney. It is all she has talked about all day long. Derrick is excited about the Bengals and is hoping all of it comes through. Carson is thrilled about all of it, but it's not fair that Hallie gets her wish and he doesn't get his. I've tried to explain to him that he benefits from it too, but he is getting stuck on the fact that he doesn't get his wish. What a child! I am just so excited that my family is excited. It is so nice to have gotten so much good news. I had been watching Grey's Anatomy today and it had a kid on there that had short gut syndrome, same as Hallie. Watching them portray his problems and the treatments for it, hit really close to home. Biggest difference was that his family had $25 million dollars to donate to the hospital and we so do not! Anyways, it was just really nice to get good news for a change and such excited news at that!

The last few weeks have been very busy as we have decided how to move forward with getting help for Hallie and trying to make it happen. We are going to Stanford on Monday. She has an appointment with the nurse practitioner there and she will guide us as to which doctor will be the best fit for Hallie. In essence, they work as a team and will all be working together to figure Miss Hallie out. We are very happy that they were able to get us in, in such a short time frame!

We have also contacted Cincinnati Children's hospital and they have doctor that specializes in motility issues. He was voted among America's Best in 2008. In the few short conversations with their department, we have gotten more direction and hope than we have had for a long time. They are still waiting on getting Hallie's medical records before they will schedule her appointment, but it looks like her appointment out there will be December 7. The plan is to be there for a few weeks so that we can do testing and any follow up. We were supposed to head out there for Christmas, but we will be moving our trip up to accomodate the doctor and make sure that we can get any tests done while we are out there. After she has been seen out there, Dr. Kaul will consult with her Stanford doctors and hopefully we will be able to utilize his expertise at a little closer location!

Hallie will also be going in for a biopsy as soon as I can get it scheduled. They want to test her for Hirchspring's Disease, which is where part of the large intestine does not have any nerves. I thought she was tested for this when she was a baby, but when I had them go back through her medical records, they couldn't find any evidence of it. The longer this goes undiagnosed, the more life threatening it becomes, so we are anxious to get this done and rule it out.

It has been really hard to try to figure out how best to help Hallie. There are so many programs out there and we truly feel like we have been led to these doctors for a reason. I have questioned many times whether we were making the right decisions for her and whether we truly need to take her all the way back to Cincinnati for help. Interestingly, I contacted her pediatrician today about other things and she told me how pleased she is with the direciton we are going. She said that the severity of her bowel disease is very uncommon and we need to seek out the best in the nation to give her the best chance. She said the two programs we have selected are among the very best for her issues in the nation. It was very nice to get some positive validation from a doctor for once, not just feel like I am fighting tooth and nail to get her the help she needs!

Just to warn you, I am probably going to be killed for posting these pictures of Derrick. He specifically warned me that I wasn't supposed to use them on the web-- no facebook, no blog, no email. What a party pooper! If her doesn't want his picture taken, then get behind the camera, not in front of it! So, if who haven't heard from me for awhile, tell the police to look to Derrick first!

Carson has been playing flag football since the middle of September. He is on the Chicago Bears and his daddy is his coach. It's been really fun to see how much he has improved since last year. I think Derrick was ready to kill him last year because he didn't even really have the fundamentals of catching or running with the ball down. He discovered a group of boys at recess that play football and he has fallen in love with the sport. This year he is so much more coordinated and so much better at the game. It makes it really fun to watch him. Last night he did really well defensively, pulling a lot of the other team's flags. He scored one touch down and had another called back (flag guarding, but honestly it wasn't-- the other kid grabbed Carson's arm and pulled it down by the flag before Carson shook him off). He also scored on the point after attempt.

Football has been really good for Carson. It has given him a good outlet for all of his energy. It has also allowed him to be the center of attention in our family. Hallie has a way of being the focus, but with football, it is all about Carson. As hard as it is to make sure he is to games and practices 3x a week, it has been a good thing for Carson, so I will be looking to put him in basketball for the winter. If anyone knows of any good basektball programs in Sparks that take 2nd graders, let me know.

Carson loves this picture-- he thinks it makes him look really fast!

And what is football without Tucker thinking that he is part of the team? He has to wear Carson's flags from last year every game and tries to escape onto the field all of the time-- put him in coach! Luckily, Carson and his team all adore Tucker and think it is great fun

And this is Hallie at the games. Normally, she doesn't fall aslep, but this was a rough day and we didn't get a nap in, so she slept through the whole game.

When Derrick isn't working the weekends (doesn't happen often right now) we are trying to do more fun things as a family. A few weeks ago, we took the kids on a nature walk. They loved it and were so proud of themselves for walking the whole way! Tucker loved walking too, although we ended up carrying him off and on...

Derrick had to go to New Orleans for work the first part of October. He was gone for almost 2 weeks. I was really struggling at the time, and wondered how in the world I would be able to manage 3 kids on my own, when one of them is Hallie. She counts for about 10. Just before he left, Derrick told me he had gotten an email about a special airfare to Salt Lake and wanted to know if I wanted to take the kids there for the weekend to break up his being gone. That was extremely realistic, financially or logistically. We have pretty much decided that we will not be traveling unless it is medically benificial to Hallie. I was kind of bummed until I got this idea that my sister had the day off of school, so maybe she could come out. It took a day to figure out the details, but Cassity was able to come for a few days and spend time with us. We had a great time and it really helped me out. It broke Derrick's trip up so that I only had a few days before and after her visit. Most of all it was great to just spend one on one time with her. Where she was born 14 years after me, she and I haven't had a lot of time to develop a relationship on an adult level. I loved getting to talk to her after my kids went to bed and to hear all about her life and for her to listen to me about my life. I knew that having a sister was going to be great one day! I've loved having a baby sister, but I am really enjoying getting to know her on an adult level. Thanks for coming out Cass!

I cannot even begin to describe how frustrated I am right now. After Hallie was in so much pain last week, I really started pushing the doctor to find answers. Friday, her central line stopped working, which meant that the home care nurse and I spent well over an hour trying to draw blood. We did everything from basically hanging her upside down to taking the dressing off to try and allow any kinks to work themselves out. Didn't work. Then, I had to take her to the lab to get her blood drawn with a poke. Not fun when I had promised her no more pokeys, but we had to have the lab work that day in order to get her next batch of TPN (nutrition) mixed up. After that, I was on the phone with the surgeon's office, trying to figure out what we needed to do. I ended up having to race to the hospital to meet the apointment they had set up for us with the radiologist. He injected dye and followed it through. Turned out she had a fibrin sheath over the end of the line. It's part of the body's natural clotting process. Hopefully, the contrast was thick enough to push it away and make it work normally. We will find out tomorrow morning when the nurse comes to draw more blood.

Monday morning I spent in the GI doctor's office. Good news is that Hallie gained a pound and grew 1/2", which is HUGE for her. Bad news is that things still aren't working well, so we finally started her on an antibiotic. Of course, the antibiotic can't be found at just any pharmacy and so we got to hunt all over to find it and head to south Reno to pick it up. I have noticed that she is less agitated and mean, but not a huge difference in her bowel movements. He also sent us to the hospital for an x-ray of her belly.

We got the results of the x-ray back today. It's not great news. Part of her large intestines appears to be dilated, which means that it is stretching out. So, we get to add another drug to her regimen to try and get things moving through better. It is a drug that has black label warnings from the FDA, so we have tried not to put her on it, but at this point, we HAVE to get things moving better, or we will end up back in Salt Lake for intestinal surgery. Some of the side effects include increased irritability, mood swings, lethargy, and muscle spasms/twitches. The problem is that they aren't sure if you stop taking the drug, that the side effects will go away. Hallie has been on this drug before when she was younger and we didn't see any of the side effects, but it is still a concern.

I've been in touch with her surgeon in Salt Lake and he wants a contrast study done again. That means a tube down her nose into her intestines so that they can put contrast in and follow it through to see exactly where it is stretched out and how extensive the damage is. Depending on what they find, it could mean more surgery for her.

I am so frustrated. Right now, she is on 8 different medications/nutritional supplements to try and get her intestines to function more efficiently. Despite all of this, they are still being damaged. It breaks my heart to see her suffering and to know where we are headed with this. She can't afford to lose much more of her intestines, so where does this put her? We are hoping and praying that the damage isn't that bad and that it will be able to repair itself, but things are not looking good. If she ends up losing more of her intestines, what are our options? I know a lot of that will depend on how much of it is damaged and where, but it is breaking my heart to think about her losing any more.

We are trying to make the best decisions for her, but it seems that despite everything we are doing, she is going to continue down this road. Is it time for us to start consulting with other children's hospitals about the possibility of her being a transplant candidate? If so, which ones are the best. San Francisco and Stamford both have great pediatric small bowel transplant programs, but so does Cincinnati, where my in-laws live. Am I willing to move out there in order to give her the best chance at survival? Is that where her best chance is? Or is it closer to home, where maybe we can do a lot of commuting. I'm not sure and I think that is part of what is weighing so heavily on me right now. There is so much to think about and so many different directions that we can take her right now, and for the most part, it is up to me to decide which ones to pursue.

We are going to wait and see what the contrast study shows. If it is something that needs to be surgically repaired, we will be heading to Salt Lake for surgery. If it is not, I want to start talking to both her GI doc and her surgeon and ask them to start researching which hospitals have the best program for her case. Regardless, we will probably be setting up a time that we can go to San Fran and meet with the doctors there. That would be my first choice since they are only about 3 1/2 hours away. I have a great aunt that lives there as well, so I would not be totally on my own in a strange city. I just really feel like the time has come that we need to start exploring our long term options with her. Even if she is not a transplant candidate at this point, we need to look at where she is heading and what we need to do to take care of her.

We are really trying to have more quality one on one time with the kids. I typically spend a lot of time with Hallie, which means that she becomes very dependent on me to do things for her. She doesn't want her daddy doing them, which makes it difficult for me to do things with the boys. Derrick is great at spending one on one time with Carson, but I rarely get to spend time with him that is not asking him to clean his room, do his homework, etc. So, we decided to start date nights with the child we spend the least amount of time with.

Carson was really helpful last night, so I wanted to reward him tonight. We didn't have a lot of time, but we made it work. I let him choose hot chocolate or ice cream. He chose hot chocolate, so we went to Starbuck's and had hot chocolate and doughnuts. It was so nice to spend time talking to him. We talked about school, friends, what's going on with Hallie. I don't want to scare him, but I need for him to understand why there are times that we drop everything and run. There are times when I have to miss things of his, not because I want to, but because I have to in order to keep Hallie alive. It turned out to be a really good night and I am so glad that we did it. I feel closer to him than I have in a long time and I feel like he has a better understanding about why mom is so stressed all of the time. Hopefully, it will be a good thing all of the way around.

Next week is Derrick and Hallie's turn....

Tucker is my most independent child. Here he is barely 14 months old and he is sleeping in a big boy bed-- earlier than either of the other kids. We put up bunk beds in the boys room because I was tired of them taking up room and didn't want to wait until Christmas to put them up as planned. I figured that we would keep Tucker in his crib for awhile longer, but at least this way I was not trying to store the bunk beds. The first night they were up, I put Tucker on the bottom one while I was taking care of Hallie's bed time routine (not a quick thing). When I came back to check on him, he had fallen asleep. I was a little hesitant to let him sleep there, but decided that I would see how it goes. He has slept there ever since. We took down the crib the other day. He can get in and out by himself, and he will usually get out 2-3 times before finally settling down and going to sleep. Last night, I found him at the top of the stairs and as I headed up to put him back in bed, he turned and ran back to bed and was scurrying to get in, when I caught up to him. Darn-- he got caught. I can't believe how easy the transition has been, though. Carson would play in his room for hours with the door shut before finally falling asleep on the floor. He even slept in a tent for a few months. Not Tucker. It has been way too easy.

And speaking of easy, Tucker LOVES to shower. And I am not talking about liking it or enjoying it. He is having a love affair with the shower. He begs, cries and pleads to get in the shower multiple times a day. This morning, Derrick was showering and wouldn't let Tucker get in with him. You would have thought the world was coming to an end. He sobbed his little guts out. And he wouldn't stop until after Derrick had gotten out and started the water again so that Tucker could get in by himself. He just stands and plays in the water. Goofy kid! The other day, Carson turned the water on so that it would warm up while he took his clothes off. He didn't shut the door all of the way and the next thing I knew, Tucker was in there-- clothes and all. He would gladly shower with every family member and then a few times by himself if I let him. If I want to shower by myself, I have to wait until he is down for a nap. He is a funny kid. He makes me laugh every day, which I desperately need righ now.

Carson's class went on a field trip, so the younger kids and I tagged along...

This picture brings me to tears. We had gotten maybe 10 turns into the corn maze when Hallie started having so much abdominal pain, she couldn't walk. I tried to get her to go on, but she ended up in a heap sobbing. I didn't think I could find my way back to the entrance, and it was just the 3 kids and I at that point. I was so frustrated and didn't know what to do. Carson looked up at me and told me that he would take Tucker for me. He carried Tucker for about 5 minutes before he put him down and let him walk. We went that way for about 10 minutes before we ran into another group with more adults and a few of my friends took Tucker for me. I am so proud of Carson for stepping up and helping me out. I don't know what I would have done otherwise!