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    • February 20, 2012

    I hate the week leading up to a big surgery. So many mixed emotions and so much to do! Hallie is really nervous about this one. It was so much easier when she was younger and didn't really understand what was going on. She's not too happy that she can't eat for several days afterwards because of the swelling. She can be fed through her g-tube, but for someone that enjoys eating sooooo much, that is little compensation. She was trying to convince me that she could do chicken broth or maybe even a soft diet. She's concerned about whether it's going to change her voice (it shouldn't, but she still worries about it). She's worried about how soon she will be up and walking and whether she will be brave when it comes time to take her back. But at the same time, she is ready. She wants her PICC line to come out. She wants to bathe and swim whenever she wants to. She wants to be done with having surgery hanging over her head. We have been saying one more surgery for years now. This is her last known surgery and we are all ready to not have it hanging over our heads anymore.

    • February 15, 2012

    Hallie started physical therapy today. Wow, that took a lot out of her! We walked out with 4 new diagnoses (just what we don't need) including muscle weakness, decreased mobility of joint, gait abnormality, and abnormal posture. They are going to be working with her once a week indefinitely, which is a bit overwhelming. They want me to talk to her orthopedic doctor when we go in March and see if he would like her to wear braces to keep her from toe walking. Sounds like fun. Do you think they make them in pink with glitter? Surgery is in 1 week. I am starting to have a lot of anxieties about this. Hallie asked in her prayer tonight to bless that she can be brave for her surgery. She needs to remember to pray for the same thing for me!

    • January 6, 2012

    My poor Hallie has bruises up and down both arms and has been poked so many times to draw blood or start an iv that her fingers are starting to swell. We are going through iv's every 10 hours and they are drawing blood multiple times a day. We had to call in an anesthesiologist to get her latest iv in because there really are not many good veins left. I got about 3 hours of sleep last night because they kept coming in to draw blood. She is going in for surgery first thing tomorrow morning. We are being very aggressive in treating this infection as her last infection took her to a place I hope she never has to go to again. About 3 days later, we will put a PICC line in after we make sure the infection is cleared and she will be able to come home. She will still require iv antibiotics at home for awhile, but I am very grateful her pediatrician is listening to me and we re learning from past experiences. I meet next Friday with Hallie's surgeon to schedule her Nissen on her stomach. If all goes well, we won't have to put a port back in. I have a hard time fathoming what that would be like to be able to bathe Hallie at any point and maybe even think about swim lessons in the summer. But I sure would like to find out!

    • December 27, 2011

    December has been a long, hard month for our whole family. We can't seem to keep anyone healthy. We have dealt with 2 sinus infections, rotavirus, and multiple bouts of the stomach flu going around several times. And that wasn't even with Hallie's issues! Hallie, of course cannot be outdone when it comes to illness, so we spent 2 1/2 weeks fighting pneumonia. I must say, she did amazing with it, and we were able to keep her out of the hospital, which is a first, but it was still ugly. Three return appointments with her pediatrician to keep adding more antibiotics and steroids, as well as many days spent on the couch, covered in a blanket, barely eating or moving. She lost 1 1/2 lbs in about a week. She kept throwing up and got to a point where she told me she felt like the staples in her intestines were pushing through to her stomach. Not something a mother wants to hear. Luckily, Hallie was able to hold her oxygen sats at 96 or higher throughout it all, which I hope means that her immune system is improving, or her lungs are getting stronger, or something that means she is going to be able to fight these respiratory bugs that she is so prone to. It was a really rough few weeks. I took her in to see her pediatrician the day before her 6th before, sure that they were going to admit her because she was so bad. I even had talked to her about being in the hospital over her birthday and that we would celebrate later. I was so surprised when the doctor just added another antibiotic and sent us home!

    Hallie was also diagnosed with arthritis a few weeks ago. I have to say that this has been a tough blow for me. I'm not sure why--it's not like we don't deal with life altering diagnoses all of the time-- a lot of them life threatening. I think I am just feeling overwhelmed and questioning for the first time why MY daughter, why does she have to suffer so much. A mother can only watch her child in agony for so long before it starts to eat away at you. And to try and find a anti-inflammatory that will go along with all of her other meds has been a challenge, not to mention that one of the best things for her pain is hot water, which is difficult when you can't bathe because of a port. There are just so many things that arthritis makes even more challenging. Her rheumatologist told me that it might be challenging to help her find the right medicine. I told them challenging is Hallie's middle name, maybe even her first name. They took a bunch of blood (about 15 vials) and we are waiting on the results to find out exactly what type of arthritis she has. We are just praying it is not rheumatoid. We go back to see the rheumatologist the end of January and if the inflammation has gotten under control enough, Hallie will begin physical therapy-- once a week, for the rest of her life. It's been a really tough pill to swallow. And from my research, arthritis flares up when you are sick, so fighting pneumonia with arthritis was a nightmare. There were times that her arms would be hurting so much that we would just wrap the heating pad around her in an attempt to relieve some of her pain. There are so many different things that we need to get for Hallie to help her with her arthritis. I feel like I need to win the lottery to get her the things she needs, which is hard to take as a parent. I did deaccess her port for several days and let her take baths. She was in the bathtub 2-3 times a day and not just in the couple of inches of water she has previously liked to bath in. The more water, the better, in Hallie's opinion. I was filling the tub one day and Hallie was watching the water rise. She kept holding her hand up to her abdominal incision from her intestinal surgeries and measuring the water. Once it hit her scar, she told me to stop, like it was the fill to line. It was about the only way to keep her functioning at all and there were times that she wanted the water to be up to her chin. Good luck with that one sweetie-- it's a bathtub, not a hot tub. When I had to access her again, it was so hard because I knew that I was taking away her source of relief. So, we have been in contact with her GI doctor and are moving forward with the Nissen Fundoplication, in which they will wrap the top part of the stomach around the bottom of the esophagus in hopes to prevent her severe reflux. We have a consult scheduled with the surgeon on January 13. Now the biggest challenge is trying to figure out when we can do it, since she has so many doctor appointments in the next 2 1/2 months. She has pulmonology and pulmonary function tests to determine if there was damage done to her lungs by her pneumonia. We have rheumatology, urology, ortho, neursosurgeon, as well as me needing to schedule cardiology. And in between all of that, she has to have muscle tests, bladder tests, and an MRA of her neck, which is like an MRI, but with them injecting dye to look at the arteries in her neck. So, I am not really sure when we will fit a week in the hospital, but I do know that we need to make it happen.

    Amongst all of our illness and misery this month, Hallie turned 6. What an incredible accomplishment! She has fought long and hard to reach this milestone and we are amazed and inspired by her every step. I can't imagine living life with so many health problems, in so much pain, and taking so much medicine. And yet she does it and is still able to find things to make her smile and giggle. Thank you to all who sents cards and packages her way. They were great diversions while she was sick and I must say that it even brought a smile to my face when I went to get the mail-- for once there was more fun mail than bills! There were many times that I couldn't barely get her to open her eyes and yet something would come in the mail and she would perk right up for awhile. So thank you, thank you, thank you!

    Hallie seems to have evened out the past few days. Christmas was the first day that she felt like eating and it didn't hurt her immensely to do so. It hardly felt like Christmas this year because we skipped out on so many of our traditions in order to just cope, not to mention that 3 of the 5 of us were puking. But it was an amazing gift to watch Hallie enjoying food again and at least we weren't in the hospital! I am trying to decide whether to keep her in school or do home bound tutoring. She has missed school so much and keeps asking me when she has school again, so I hate to take it away from her, but I am so concerned about her health. Maybe I will just pull her out for the winter, to get past the worst of cold and flu season because we cannot keep dealing with all of this illness. Maybe I will give it one more shot and if she gets sick again, pull her out. It is such a hard decision and I wish someone else would make it for me!

    Thank you for all of your kind thoughts and prayers. We have hit many lows this month and I know that it is your support that keeps pulling us through. We wouldn't be able to do it without you. Please pray for Derrick and I as we make a lot of difficult decisions in the next month or so, that we will know what is in Hallie's best interests. It all gets so complicated and unfortunately, it is up to us to lead the doctors in many aspects. I did find a heterotaxy support group, which I am excited about. Hopefully, we kind find a few families that can help give us insight on what direction to go in some of these decisions. And please, always remember to keep Hallie in your prayers. I know the Lord has a plan for her, but she needs all the help she can get to fulfill it.

    • December 20, 2011

    Thank you all for the birthday wishes for Hallie! She has had a fun and exciting day! We took her down to Navy Pier on Lake Michigan and spent the day at the Winter WonderFest there. They had so many fun things to do, that it didn't matter that there were many things she couldn't do. She fell asleep at 6:00, she had worn herself out so much!

    Hallie continues to recover from pneumonia and it is a long, slow road. Yesterday, I took her back in to the doctor because she couldn't stop throwing up and could hardly stay awake. I was afraid she would be admitted, but her oxygen levels are holding strong. They started her on a new antibiotic and put her back on steroids. Throw in a little anti-nausea medicine and some pain meds and she is perking up. I've only had to give her one nebulizer treatment today. So, hopefully she is on the mend.

    I am becoming more and more overwhelmed by her arthritis, the more I learn about it. I've been given many tips on how to help and some work great, but some (like a hot tub or even a hot bath) are complicated by her other health problems. We are meeting with her surgeon next week to move forward with the surgery on her stomach to try and eliminate the need for her port to be accessed all of the time. Tonight, I had to wake her up to get her to eat something so that I could give her the anti-inflammatory medicine, which is really hard on the stomach. She was hurting so much that she had to fall asleep on top of the heating pad. It's been a really tough reality to swallow- that this will be with her for the rest of her life. Please keep us in your thoughts and prayers, especially this Christmas. I could really use some peace and comfort right about now.

    • December 20, 2011

    6 years ago, my world was turned upside down. The day Hallie was born started a roller coaster that I could never have imagined! But I have learned so much from her in the process. She has taught me more about inner strength, perserverance, and a good attitude than I ever could have learned in an entire lifetime without her. I love you baby girl! I'm glad we managed to keep you out of the hospital so that you could enjoy today!

    • December 14, 2011

    Hallie was diagnosed with arthritis today. They are running a bunch of blood work to determine the type. She is beginning a new prescription to help with the inflammation and once that is under control, she will start physical therapy. They tell me that she will most likely need physical therapy for the rest of her life. Just another diagnosis in our ever growing list for us to manage. I'm frustrated and overwhelmed to think of trying to manage this on top of everything else. The good news is that at least it is a common diagnosis that people will understand. There are so many times that I try to explain what Hallie has and people look at me like I've lost my mind. At least there is a name for some of her pain that people can get without a lot of explanation.

    • December 9, 2011

    We are quickly coming up on Hallie's 6th birthday on December 20. What a HUGE milestone for her! She is very quickly growing up and we couldn't be more proud of her and her determination to fight and conquer all of the problems with her body. We never know where each year will take her and so we don't take her birthdays for granted. They are truly a celebration of how far she has come and what she has overcome to make it to the next birthday. Hallie would love nothing more for her birthday than mail. She gets so excited every time there is a piece of mail with her name on it, but typically it is a boring old bill. If you would like to help make her birthday special this year, she would love nothing more than a birthday card in the mail. It doesn't have to be fancy. Hallie's specialty is hand drawn birthday cards and she would be thrilled with just about anything in the mail that is fun. If you get a chance in the next few days, you can drop a card in the mail to:

    Hallie Munro
    4928 Middaugh Ave
    Downers Grove, IL 60515

    It would really make her birthday one for her to remember!

    • December 2, 2011

    Recovery is such a slow process! I wish they would have told me before surgery that it would take 4 months for Hallie's nerves to heal. It has been very interesting to see how her body is responding since surgery. She is no longer in such intense pain, which is a huge relief. It had gotten to a point where the pain was so unbearable that it consumed a large part of our lives. However, Hallie is in a new kind of pain. She tells me many times a day that her whole entire body hurts and there are days when everything inside of her body hurts, or so she tells me. On the good side, the pain responds well to ibuprofen, which it never has before. I give it to her 2-3 times a day and she feels pretty good. Her pediatrician thinks that means something is inflamed. We are almost 6 weeks out from surgery, so most of the inflammation around the surgical site should be about gone. We are now concerned that she has something else going on and are being sent to see a rheumatologist in a few weeks. It's hard to think that she might have something else on top of everything else she has, but at this point, I don't think we can ignore it any longer.

    Other than the pain, Hallie is doing really well. She went back to school a few weeks ago and is enjoying it. Her body can't be pushed, so she still spends a lot of time outside of school lying down or resting. She is wanting to be more social and have play dates, but between those and school, she gets pretty worn out. But, she lives to play with her friends. Hallie's balance seems to be improving and her bowels seem to be normalizing again. She will go in February and have a slew of tests done to determine if there is any permanent nerve damage caused by her tethered spinal cord.

    We met with the geneticist this week. I was slightly disappointed after waiting six months to see him. He feels that most of her defects fit heterotaxia/laterality syndrome which is what causes polysplenia. No surprises there and I agree that most of her symptoms fit into that syndrome. That is except for her spinal issues and those happen to be some pretty big problems that don't make sense how they occurred as part of the laterality syndrome. The geneticist was content to to say it was just an anomaly, that there is no known syndrome that has all of her defects. We already knew that. He didn't want to even do the basic genetic work up, even though he told us if he had seen Hallie as a baby, he would have done a whole work up on her. I finally had to insist that he do the basic tests for our peace of mind, as well as the many doctors that have asked us if we have done the testing. So, they drew her blood and are running tests, which we should get the results of in about a month. The geneticist feels like they will come back normal and then we can be done with genetics. I wouldn't be surprised if they come back normal, but I think the answer to her problems are wrapped up in genetics. They may not have the technology or knowledge yet to find us the answers she needs, but that doesn't mean she doesn't have an undiagnosed syndrome.

    We also met with an advocate group this week. We have been having problems with the school giving Hallie the care that she needs and deserves. We've been discussing our options for Hallie's education. There is a school for medically fragile kids in the neighboring village, where there are nurses that are in the classroom with the students. Our concern is that Hallie is very bright and might not get pushed to her full potential in that environment. We could do home bound tutoring, and that might be a viable option, but I know Hallie thrives on the social aspect of school and gets a lot of natural endorphins from it that help her deal with her pain. So, this group wants us to do some IQ testing on Hallie to help us have all of the information possible to make this difficult decision. They also are trying to help us get Hallie covered by medicaid. Her medical bills are killing us. We are getting further and further into debt, without an end in sight. Not having to pay for all of the bills she continues to wrack up would be a huge blessing. They are also working on helping us find a few doctors to add to our team that will over see her care. As they put it, I should only have to steer the ship, not be the crew to make it run as well. What a novel concept! It would be amazing if they can make that happen! I have had so much stress lately that I've had a tension headache for 2 weeks that I can't seem to break for more than a few hours a day. I will take whatever help I can get at this point to alleviate some of my stress.

    Despite all of Hallie's medical problems, she is continuing to grow and hit milestones. She weighs 41 lbs now, which is huge for her! We are coming up on her 6th birthday in a few weeks. I was reflecting this week on where we were 6 years ago. Festival of Trees in Utah started this week. Last time opening night was on my birthday, like it was this year, I was 8 1/2 months pregnant, happily planning for our new baby to join our family, oblivious to the role Primary Children's Hospital would play in our near future. It was pretty poignant to reflect this week on how much our lives have changed in the last 6 years as a result of Hallie's medical problems. But it is also amazing to see how far she has come. I don't ever think too far ahead in our lives because I never know what might happen with Hallie. I never know where she might take us, so I don't focus on the future. It sometimes feels like a black hole. But it makes each and every milestone she hits means so much more to us. Her birthday is something we will never take for granted. She wants to know if we will throw her a surprise party for her birthday. She will hide in her room while everyone comes and then we can bring her out with a blind fold and yell surprise. She cracks me up! Hallie's big milestone this week is she has a loose tooth. She is so excited! You would have thought she won the lottery. It has gone from being barely loose to ready to come out in a day or two. She wiggles it non-stop. My little girl is getting to be so big! Now she can stop asking the anesthesiologists to knock one of her teeth loose when they intubate her. They always ask if she has any loose teeth and she always tells them no, but they could give her one of they wanted. It is fun to watch her enjoy this small part of growing up!

    As the holidays approach, we find ourselves focusing more on the true meaning of Christmas. We are going to have a very simple Christmas this year and focus more on the importance of our relationships, especially within our own family. You never know when you will never have another chance to say I Love You, so please take the opportunity to hold your kids a bit closer this Christmas and not take their health for granted. The body is an amazing thing, especially when everything works the way it is supposed to, yet I think many of us just assume that being healthy is a given. Our thoughts a prayers go out to the many children that will spend this Christmas sick, not feeling well, hurting, and especially those that will spend their Christmas in the hospital. Please remember those kids as you go about your holiday celebrations.

    • October 19, 2011

    Hallie is out of surgery and doing great. Things went better than we could have hoped for. She was back there longer than expected, but they told us it took them almost an hour to prep her and get her in the right position, so I guess 3 hours total isn't too bad. She woke up pretty groggy and out of it, although one of the first things she did was sign "I love you" to me in recovery, followed quickly after by her moving her pointer finger up and down. It took a little while to figure out what she meant, but she was wanting to play with Grammy's iPad. She is in a constant care room for the next day, but is doing phenomenally. We have had so many of her doctors and nurses comment on how well she is doing. Of course, they loaded her with pain meds during surgery, but most of them are wearing off and she is doing just fine. We are alternating tylenol and the iv form of ibuprofen just to be safe, but I am surprised at how little pain she is in. I guess when you are in so much pain every day, a little extra isn't a big deal. She did tell me that her legs don't hurt for the first time in almost a year, so we are very hopeful that this will alleviate at least the pain in her lower extremities. Hallie is eating, drinking, playing, and we have even heard a few laughs out of her and seen more than a few smiles. All in all, we are very pleased with how things have gone so far.

    Thank you all for your thoughts and prayers! I know they have played a huge role in how well things have gone and I am extremely grateful for them.