Hallie

Hallie turned 5 right after we moved. She and her daddy went on a date a few days before. She was sooooooo excited! She spent days choosing what to wear. The day of she took a ling bath, had me paint her nails, and curl her hair. The went to the rec center and made jewelry for Christmas presents. They went to eat at her new personal favorite place Steak and Shake. She had a great time!

On her birthday, we went bowling as a family, went out to eat at Steak and Shake and then invited the Walker family over for cake. I have more pictures on my camera, so I will post them when I get a chance to download them.











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Nativity

Our new ward puts on a live nativity every year. We moved here just in time to take part and the kids LOVED it! Technically, you were supposed to be 5 to participate, but I helped out in the costume department and he was very insistent, so they let him be in it as well. It was freezing cold! I think it was 8 degrees and well below zero with the wind chill. The kids loved being a part of it and it really gave us a great start to our holidays.

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Downers Grove Welcomes Santa

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Tucker

What can I say about my Tucker? The kid cracks me up each and every day. I think the pictures speak for themselves...

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Tucker insists on dressing "like my daddy" 2-3 times a week. He goes every where in style.

Last month, we found Tucker putting his shoes and coat on one Sunday night. We asked where he was going. "My running away". Where are you running away to? "To church" by this point, we are trying hard not to laugh. How are you getting there? "My walking". He went and got his tie on. Curious, we opened the back door to see what he would do. He walked outside, shivered, asked his daddy to drive him, and when he was told no, turned around, walked back in, and headed down to the basement to "go to school".

Another day, we were driving and he saw an airplane. He told us, "my need to catch it!". He got quite insistent so we asked him why. He told us that he needed to get on it with his suitcase. We asked him how he was going to catch it. With a "butter net". (butterfly net)

I want to be better about postinghis Tuckerisms because I don't want to forget how much he cracks me up.


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Fall

We moved just in time to have some fun in the leaves. They removed over 75 bags of leaves before we got here and I was out there yesterday still sucking them up. My kids have loved the leaves, but I am starting to understand why Derrick doesn't have the same enthusiasm for fall that I have always had!

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Location:New house-- Downers Grove IL

Update (FINALLY!)

All right, for those that have been asking, I am finally updating my blog! We have had so many changes and things happen, that when I got behind, it just seemed so overwhelming to try and update it.  So instead of trying to update every little thing, I am just going to give a brief overview and then work on keeping it updated from here.  I will work on uploading all of our pictures, but it will probably be out order.

So on to our biggest of changes-- we moved to Chicago in November!  We have been trying to get Hallie somewhere where there is a children's hospital for a while now.  It has taken such a huge toll on our family to have to take her out of town for her care.  Last year, I was out of town at least once a month at doctors or hospitals.  It really concerned us that if something big came up for Hallie, we would not be able to get her the care that she needed fast enough.  Last July, I woke up one morning to Hallie throwing up and with every sign of a bowel obstruction.  I had to put all 3 kids and the dog in the car and drive 8 hours to Salt Lake by myself with Hallie throwing up in ziploc bags the whole way.  She was admitted to Primary's as soon as we got there.  We knew it was just a matter of time before something even bigger came up and we were very concerned for her life, living that far away from the care she needed.

However, we couldn't afford to go without insurance for her and with the economy the way it has been, it has been a huge challenge to find a way out of Reno.  Derrick has really enjoyed working for Freeman and they have been very good to us, so we were hesitant to leave them.  Our prayers were answered this fall when Derrick got a call from the Chicago branch of Freeman, asking him to apply for a position.  The laws have changed here in Chicago to allow his company to open up their electrical department and they needed someone with experience.  After a few weeks of fasting and praying and a lot of negotiating, we made the decision to move. 

It has been a big change for us.  We are loving the schools and being this close to such great doctors and hospitals.  The winter was very different for us, with Chicago being so much colder and getting so much more snow than Reno, but we loved it!  We have a little pond a street away that we ice skated on all winter.  Carson and Tucker especially loved it, begging us to take them skating several times a week.  Carson was so sad to have the snow melt.  I caught him putting the snow in my freezer to save for summer.  We love our neighborhood and the cute little village we moved to.  We live about a mile from historic down town.  I can't wait for it to start warming up so that I can just walk downtown with the kids. 

Derrick is doing really well in his new position.  He is the electrical account executive, so he is basically the liason between the clients and the union electricians who actually do the work.  He is very busy, especially right now, with it being the middle of show season, but he seems to have adapted to his new responsibilities very quickly.  We are very proud of him for his hard work and being able to juggle his new job and the family.  We will be glad for the middle of April, when he can slow down a bit and be home more often with us.

Hallie had a really good few months after we moved here.  We had prayed so much that we would just be able to get her out here without any major issues and she did great.  She was actually better than she has been in almost 2 years.  It was so nice to have that down time to get settled in.  And then she crashed in January with a partial bowel obstruction.  We spent a few days in the hospital while they cleared it and we have been on a roller coaster ever since.  She's been diagnosed with asthma and migraines, so we have added a pulmonolgist and neuroligist into the mix, as well as her surgeon, GI doc, and cardiologist.  It has been a very long couple of months filled with doctors appointments.  We average 3-4 a week, especially since Hallie and Carson have started counseling.  I have been pushed beyond limits I didn't know existed and yet here I am, still standing.  Hallie is going to have surgery on Monday to take biopsies of her intestines.  We are trying to elminate all of the possible causes of her pain and malfunctioning bowels before settling on the cause of it being a problem from the STEP procedure she had done at 5 months. 

I am going to go give Hallie her meds, but I want to do an update for each kid with pictures, so I am hoping to be able to work on it while Hallie is at preschool.  Blogging has really been therapeutic for me, so I am going to try and be much better at keeping it up to date!

Hallie's Golf Tournament

Hallie's golf tournament was a big success and the best part is that now it is over! I don't think that I realized how much work it was going to be, but it turned into a lot more than I planned on. I couldn't have done it without my friend Jaime. I know I have complained before about my lack of support, but Jaime is a blessing from the Lord and is truly an amazing friend. Her parents even kept her kids the week before the tournament so that she could focus on helping me. It was incredible!

I also had Krissa, who is my sister's soccer coach help out a ton. I couldn't believe the things she was able to get for the tournament from Salt Lake. Her family drove out and her parents came from California. Their team even won the tournament!

I had my sister Cassity fly out the beginning of the week to help with the kids. I don't know what I would have done without her because Hallie started with a pseudo obstruction and all I could do was deal with her and try to stay sane. Cass was a huge help! My mom and dad flew in a few days before and mom took over Hallie so that I could get things done. My brother Cody and his wife Heather drove out to help as well. I don't know how I would have done it without any of them.

The day of the tournament went so smoothly and we had plenty of help. It really went off without a hiccup. We ended up with 49 golfers and I was very surprised by who some of them were. It was incredible to have so many people there that were truly concerned about Hallie and our family. There were a few times that I had tears in my eyes because of things people said or did. So while it was a ton of work, it turned out to be an amazing experience. Thank you to all who helped make it a success!

Good job Carson!

Carson had surgery today to fix your nose. I have to say that I was so proud of him! He does not do well with pain. Our family jokes that it is a good thing that it is Hallie that has the health problems because Carson would not do well with it. We'll just say he is a tad bit dramatic.

So going into this, I was more than a little worried. He's done fairly well with the pain since he broke it, but one never knows what will happen once you get to the hospital.

Carson, on the other hand, was so excited. He could hardly wait to get there. He has loved the extra attention and I think he has appreciated getting a deeper insight into his sister's life.

And Hallie was more than excited to get to go to a friend's house to play and not be the one going to the hospital. She came into my room at 1:00 this morning, after unhooking herself from her pump. She wanted to know if it was time to go yet. I sent her back to her bed and 30 minutes later, I found her wandering around the house. When I woke Carson up at 4:30, Hallie was up and out of bed in the other room before he was.

We got to the hospital and had to wait for awhile due to a scheduling mistake (surprise). Carson was so good and entertained himself. We have spent a lot of time preparing him and talking about what to expect. He was thrilled to put on the hospital gown and to have his vitals taken. He knew there was a point where I couldn't go back with him, but he was totally fine with it.

20 minutes later, he was done. The dr. said the septum snapped right back into place. He gets to wear a splint for 2 weeks, which he is not thrilled about. He wished that he actually got a room with a door like Hallie gets when she stays in the hospital and was actually disappointed that he didn't have to stay overnight. But he did get to ride in a wheelchair on the way out, which almost made up for it.

In all, I was so proud of him. He did so well-- he didn't whine or cry and hasn't complained at all. In fact, of the 20 surgeries my kids have had, this was by far the easiest. Great job Carson!

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Discouraged

I have to admit that I have been pretty discourage the last little while. Hallie is holding steady, not great, but not horrible either. I'm grateful for the reprieve from her TPN. I cleaned out her cupboard of medical supplies to gear up for all of the tube feedings supplies. I boxed up all of her TPN supplies and put them in the garage. Unfortunately, I don't feel like she is done with TPN. I feel like it is only a matter of time before she is back on it. I am grateful for the time that she has to rebuild her reserves and to not have to worry about the damage being caused to her liver. And tube feeds do give us a certain amount of freedom, in that we can start it whenever we feel like it at night, we just have to adjust the rate so that it goes in faster or slower. She is loving being able to go to sleep at night, not hooked up-- we hook her up after she is alseep.

So while I am grateful for these things, reality looms very close. While she was on TPN, Hallie was only getting 2 nights a week of tube feeds. It had gotten to a point where I HATED tube feeds. They were always her worst night and usually led to absolute blow outs or days of pain because she wasn't tolerating the formula well. We switched to a new formula (Neocate Jr.) in March to see if she would do better with it. Luckily, her allergy/asthma doctor had a ton of samples that he gave us. They didn't have any other patients that used the Neocate, so they loaded us up. Well, reality set in last week when I realized that we only had 2 cans left and I needed to order more. I started poking around the internet and was shocked at the prices. $50-$60 a can and she goes through a can every 2 days. We were going to have to pay almost $1,000 a month for her formula. It just was not a possibility. She has drained us dry and we don't have that kind of money to pay on top of her other medical bills. I started contacting doctors, trying to come up with free samples or a cheaper place to get it at. One of the nurses at the allergy/asthma dr. told us that our insurance should cover it, got all of the information and sent it in. I have to admit that I was getting my hopes up. If they covered it (we have never had an insurance cover it in the past), it would solve a lot of problems. The next morning, I got a call that they denied it. I cried. I had no idea what we were going to do.

I just feel so tired. I'm tired of fighting-- doctors, insurance companies, and anything else that I have to do to keep us afloat. Derrick has been traveling a lot and I am doing most of this on my own. Our golf tournament that I have been working on for 6 months is 3 weeks away. The deadline to sign up is in 3 days. We have 8 people registered and 2 of them are under 5. I have a lot more that have said they would golf, but so far no one else has paid. We were really hoping that this would at least give us a cushion financially, especially since our insurance plan changes in 4 days and it is the worst insurance we have ever had. We are going to have to pay for everything-- labs, x-rays, any little thing that comes along. It is making me very nervous because we are barely making it with the good coverage we have now. So, it is very discouraging to have worked this hard and just be hoping to break even.

My cousin Gentrie is really sick. She has a paralyzed stomach and hasn't been able to eat or drink since December. Her body is slowly shutting down. I have been helping them the last few weeks to set up a website, FB group, and get going on fundraising. I am happy to help because if it cuts through some of the red tape and uncertainty of how to proceed that we had, it is worth it. They had a yard sale yesterday and it was HUGE! They made $18,000. She needs $200,000, so this is a drop in the bucket, but it is a good start.

I am so excited for them, but I am so sad for me at the same time. Seeing the help that they were able to rally, made me realize how small my support system has gotten. A year and a half ago, when she first started having problems, I didn't think we would have an issue getting the help that we needed. I had friends here, we had a good ward, it would all be good. Then I left for Salt Lake for 2 weeks last March. When that stretched into 2 months and I didn't hear from hardly any of my "friends", I have to say I was disappointed. Maybe they weren't such great friends to begin with. As we got back and started to get back into our lives here, I realized that most of them had no clue what our life was really like and how hard it could get. Since then, I have watched more and more people drop out of my life. People I used to talk to all of the time, I haven't talked to in months. And it is not just the people that I thought I was friends with here in Reno. It was life long friends in Salt Lake as well. Some have admitted that our life is just too hard. Some have said it makes them feel guilty to be struggling with what they are when our life is so much more complicated. Some just don't tell us anything and fade out of our lives. And some can't deal with the constant attention we seem to get because we have so much drama going on. At a time when I need friends more than anything, it has been extremely difficult to watch this happening.

When we moved, we specifically looked outside our ward boundaries because we knew that we needed to add to our support system. I am very happy with my new ward. I think that given time, we can really get involved and be happy here. The only problem is that we are gone so much-- Derrick for work and me traveling with Hallie. It is hard to get to know people and to let them in. After Hallie's news piece aired, I heard people at church pointing at us, telling people that Hallie was sick-- no really, really sick. I don't mind-- I would rather them know than not, but it just showed how many people were in the dark about why we are gone all of the time. The sad thing is that I feel like we lost our old support system in our old ward. We didn't add to it, we just swapped. That's all right I guess, just sad to feel like the reason people were stepping up before was simply because we were in the ward and their responsibility. We have a handful of peopl left from our old ward that make an effort to stay in touch with us and I am so grateful for them.

So back to the formula-- here I am so discouraged and tired of fighting for everything. I had no idea what we were going to do. I even went for a 3 hour drive into the mountains and just prayed and cried because it felt like such a heavy burden. When I came back, there was a message from a nurse at our pediatrician's office. She was going to try and fight our insurance for us and would call me in the morning. Friday, Marci spent 6 hours on the phone with United Healthcare. And I literally mean 6 hours. When she had questions for us, she had someone else call and ask them because she didn't want to have to start all over again. I finally got a phone call from her saying that they were going to cover it. We have a 3 months supply of formula (about $3,000) being shipped out tomorrow.

I can't even tell you how grateful I am to have someone fight for us. To know that Marci would go to such extremes to help us means a lot. I know that my Heavenly Father hasn't left me alone. He has given me trials more than I ever dreamed possible, but He will not leave me alone. I don't know what is going to happen with the golf tournament. It may just be a small, quiet event and if it is, I will pick myself up and move on to the next thing. No matter how tired I am, I can't keep fighting because Hallie is worth every second of it. I will just enjoy it that much more when we have someone else help carry the gauntlet for a little while.

Carson's having surgery

I guess my kids think it is totally normal to have surgery. No big deal. Tucker has had 2 surgeries in the last year. Hallie has had 3 along with countless procedures under anesthesia. Carson wanted in on the action, so he will be having surgery on Wednesday.

On what, you ask? His nose. He was warming up for a baseball game on Saturday and the sun got in his eyes. A ball glanced off of the tip of his glove and hit him in the nose. He had a good nose bleed, but I didn't think too much about it. I ran home and grabbed a clean pair of pants and by the time I got back (5 minutes), the bleeding had stopped. He played his game, we went home, no complaints. Fast forward to Tuesday morning when I am woke up by Derrick yelling at me to get into Carson's room. I run in and find him covered in blood. It was coming out of both nostrils, all over his face, all over his bed. It was a bit alarming. We cleaned him up, put a nose ice pack our home health nurse had given us for just such an occasion on it and waited until we could call the doctor.

I called the pediatrician and they told me to take him into the bathroom and look at his nose really closely under the lights. They wanted to know if it was crooked. Sure enough, I didn't even need the light to see it. I just had to look close. It's pretty crooked. I tried to convince myself it wasn't that big of a deal, but I think deep down I knew that it was. We didn't let him play in his last baseball game. He was devastated but no more so than his coach. The coach actually offerred to go buy a mask that he could wear to protect the nose. It made Carson feel good because he is getting to be a really awesome baseball player.

So yesterday, we headed off to the ENT. Luckily, we have one here because of Tucker, so I was able to convince them to get him in ASAP. The funny thing is there is no bruising and not really any swelling, so they weren't too concerned about it. Even the nurse that took us back was a little disappointed that it wasn't worse looking and I could tell that she thought I was out of my mind for making such a big deal about getting him in that quickly. Then the doctor came in. He looked at it, shined a light up there and we were very quickly talking surgery. He says it is a lot worse on the inside than the outside. He thinks the ball hit right where the septum connects to the nasal bone. The bone got pushed one way and the septum popped off completely. Carson is having trouble breathing and it has started bleeding 2 other times. So, we get to go in and fix it.

They will go in with 2 rods, one on each side and try to manipulate the septum back into place. He says it doesn't always work and that sometimes all it does is buy him a few years before they need to open it up to fix it, but it is worth trying this less invasive way first. It is out patient surgery and he will have to wear a splint for about 2 weeks to protect his nose.

As we were walking out, Carson looked at me and asked if he was the only one in the family that hadn't had surgery yet. I think he thinks it is like a rite of passage to be a part of our family. He was actually even a little excited about it. Then reality started setting in last night and he is getting nervous. I will just be glad to get it over with. I will post pictures after then surgery because honestly, there isn't really anything to see right now.

Remembering my Grandpa...

No, I am not in Salt Lake this Memorial Day, although I am desperately wishing that I was. Derrick is there, enjoying today with my family, having a BBQ tonight with my aunts, uncles, cousins, grandma, and my immediate family. I am so sad that I am not there! What an incredible legacy my grandpa has continuing on!

I have to admit, I am struggling with my grandpa's death, more than I ever thought possible. I know part of it is because my life is not the easiest right now, but I have lost other grandparents and it was never this hard. He had an incredible bond with my kids, especially Hallie. Pop Pop could do no wrong in their eyes! Grandpa always believed in you. He had a very strong personality, but he never forced you do to anything. He just believed in you so much that you didn't want to disappoint him. Maybe that is part of why I miss him so much-- my confidence builder is gone!

Grandpa was huge on family. He provided every opportunity possible for his family to be together and create memories together. As an adult, with kids of my own, I am realizing more and more how priceless that gift was! I keep in touch with almost every single one of my cousins on that side of the family. In some cases, they were more like siblings than cousins. My grandpa and grandma owned 2 apartment complexes. As us grandchildren grew up and got married, we they became our first home to many of us. Derrick and I were talking the other night about how much family was in our ward when we first got married. At one point, there were 4 of us grandchildren living there at the same time. What a unique experience it was, as we were all establishing our adult lives.

Grandpa was the first to pull out a puzzle to work on, the first to want to play Rook or dominoes. He was always up for a game of golf, or simply a long drive (I think he purposely took the slow boat to China route often just to spend more time with us). He was a big tease as well. I remember up at his cabin at Bear Lake that he had this mask he liked to wear around and scare us with. He would come around the corner, wearing this mask and send us all running. He had me convinced when I was younger that he could remove his thumb and put it back on. He loved for us to do his hair. I've tried letting my kids do my hair and let me tell you, Grandpa was a saint for enduring it almost every Sunday night!

I could go on and on with my memories. I wish so much that I could sit at his grave today and share those memories with my children, so that his legacy will go on! I will have to content myself that we will be there for his birthday in July and I will take my kids then.

I love you and miss you Grandpa!

Thought from church

Today was a very insightful day at church. This last week has been a hard one, with lots of tears. I really needed an uplifting day at church. The following story was shared with us during Sunday School about a young piano student:

His mother, wishing to encourage him, bought tickets for a performance of the great Polish pianist, Paderewski. The night of the concert arrived and the mother and son found their seats near the front of the concert hall. While the mother visited with friends, the boy slipped quietly away.

Suddenly, it was time for the performance to begin and a single spotlight cut through the darkness of the concert hall to illuminate the grand piano on stage. Only then did the audience notice the little boy on the bench, innocently picking out "Twinkle, Twinkle, Little Star".

His mother gasped, but before she could move, Paderweski appeared on stage and quickly moved to the keyboard. He whispered to the boy, "Don't quit, keep playing." And then, leaning over, the master reached down with his left hand and began filling in the bass part. Soon his right arm reached around the other side, encircling the child, to add a running obbligato. Together, the old master and the young novice held the crowd mesmerized.

In our lives, unpolished though we may be, it is the Master who surrounds us and whispers in our ear, time and time again, "Don't quit. Keep playing." And as we do, He augments and supplements until a work of amazing beauty is created. He is right there with all of us, telling us over and over, "Keep playing." James E. Faust

I cannot even begin to tell you how many times that I have felt inadequate at being Hallie's mom. Her challenges are many and there are many times that I have felt like I just couldn't do it. I would love for someone else to carry the burden of caring for her, or of making the many difficult decisions that have to be made for her.

I needed this reminder today that regardless of what challenges I am called to face, I can do it because I won't be doing it by myself. The Lord will have His arms around me, helping me, making my effort more than enough. And for that I am very grateful..

Hallie's Surgery

About a month ago, we went to Salt Lake where Hallie had surgery. They took out her central line and put in a more permanent port. It is completely under her skin and is accessed (by me) once a week with a needle. There is tubing attached to the needle and that remains in place for 5 days, under a dressing, to be used to give her nutrition. It allows her to bathe and swim, hopefully giving her a little bit more of a normal life.

Surgery was anything but smooth, with the surgeon having to try 3 different times to get it in place. None of her veins return to her heart normally, so it makes it hard to get the line in to the right spot. She lost quite a bit of blood and what should have been an hour or two recovery, turned into 10 hours, with us not sure whether we were going to be able to take her home that night. She required quite a bit of pain meds (they found one that she isn't allergic to, which is really nice!) and her oxygen levels were not great. It made for a very long day and a longer recovery.

We returned to the hospital a few days later for tests. She was supposed to have a tube put down her nose, into her intestines and contrast put through. She has had this done numerous times, and while it is not the most pleasant thing, she usually handles it fairly well. This time they couldn't get her intestines to accept the tube, further evidence of how poorly her intestines are functioning right now. When they place the tube, Hallie is in a good amount of pain. They tried for 45 minutes to place it, before they tried to put water through it. She ended up throwing it up immediately. So we moved on to plan b, which was to put contrast through her feeding tube over 2 hours and then do the scan. It's not as effective, but would hopefully show what needed to be seen. It caused her so much pain! Mickey Mouse was at the hospital, so they found us a wagon to take her around in, but she really wasn't to impressed. She said hi to him, but then just zoned to try and get away from the pain. She threw up about 20 minutes before she was schedule for the test, but they went ahead and did it any way. The radiologist feels like there is scar tissue that has built up along all 30+ of her incisions and it is not allowing it to move the right way.

I have watched her continually going down hill. She is eating less and less, her pain is increasing. They are going to increase her TPN to try and make up the difference. The more TPN she is on, the harder is is on her liver. Saturday night, she was up throwing up all night until we turned off her tube feeding. She has been in so much pain that she won't even move. We had to take her off her meds yesterday to prepare her for the tests next week in Cincinnati, but with her struggling before we took her off, we are very concerned for her. We had to put her on a liquid diet a few days ago, which has alleviated some of her pain, but it is not a long term solution.

My heart is breaking. Watching her suffer like this is the hardest thing I have ever done and I am so scared that I am going to lose my daughter. We are quickly running out of options. We are hoping and praying like we never have before that these tests in Cincinnati will prove that it is scar tissue. It would require doctors to open her abdomen up and try to clean it out, which is extremely risky for her, but it might give her a fighting chance. If they can't prove that is what it is, or the can't remove enough scar tissue to help her intestines function better, our next option is likely an intestinal transplant. They don't have great survival odds, so we are fighting to keep her from getting to that point.

Please, please, please keep her in your prayers. Please help spread word about her and ask your family and friends to keep her in their prayers. We desperately need a miracle right now.