It has been a busy weekend and I haven't had a chance to post. I am busy packing and getting everything ready for our trip. Jared and I leave tomorrow and it is crazy trying to keep track of all of his medical items that we need to bring. Jeff and the other two kids leave on Saturday. We are all excited and I hopefully will have a chance to post about the goings on in Wisconsin!

Itsy, Bitsy, Baby Steps!

When you have a child with serious health issues and also severe developmental delays, life is all about baby steps. Sometimes these baby steps are itsy, bitsy, but they are huge for them. Our latest isty, bitsy baby step was that Jared ate a half of a cheerio yesterday. Now this might not seem to extraordinary, but it is a fabulous step for him. His OT was here yesterday and he brought a big container of cheerios for Jared to play with. We are just hoping to get him to touch food right now. He discovered that a cheerio broken in half looks like a moon (Jared is fascinated with moons and stars right now). We spent quite a while making moons and playing with our tongues. I then proceeded to put a moon on his tongue and he immediately pulled it back into his mouth. He was quite surprised to find the cheerio there and it scared him. He kept trying to figure out how to get it out of his mouth and the whole time he was crying and scared but it eventually dissolved. This doesn't sound to successful but he didn't gag on it! Anytime we have ever put anything in his mouth he would gag, but he didn't this time. He didn't like it and didn't know what to do with it but he didn't gag on it. The OT and I were high fiveing and felt like the session had been a complete success. Like I said, itsy, bitsy, baby steps are small but they are at least headed in the right direction!

Dancing in the Rain!

We had a very nice time in Star Valley with Jeff's parents this past week. The kids were great travelers and my sister, Rachel, and her three kids came up with us also. It still felt like winter and there was still plenty of snow around but the kids were still able to play outside some and it was beautiful as always. Tyler had a pretty rough week. He has had a really bad head cold and this new medicine that he has been on made him so tired that he looked like a zombie. I wasn't sure if it was his cold or the medicine but he looked like he could hardly keep his eyes open and he had absolutely no energy at all. The poor kid was miserable. We have been weening the medicine down the last few days and then we are going to take a break from everything for a while and see how things go. He actually seemed just a little bit better today.

Alyssa had a great time playing with her cousins and enjoyed making up and performing several puppet shows for us all. Jared was as usual a Mommy's boy and didn't let me out of sight, but I was able to sneak away for a few naps. Grandpa spent a lot of time on the stairs with Jared trying to teach him how to climb them and Jared actually climbed on stair by himself. This seems rather insignificant but it is HUGE for Jared. He'll probably be scooting up and down the stairs any day now!

Jeff's parents are truly the best in-laws there are. They are sooooo good to me. They never judge me and they are constantly building me up and encouraging me. I am so grateful to have them in my life. I feel so blessed that I feel comfortable enough to spend time with them even without Jeff with me. I love them both so much and I am grateful for the love that they continually show me.

As for the life is never dull title. While we were in Wyoming, Tyler was a zombie and then he started complaining about some other physical symptoms ( I am not going into details in the symptoms because they are embarrassing to him). He was so uncomfortable and so on Saturday, after we got home, I took him to the doctor. They couldn't find anything but he was still not doing well on Sunday. This morning Jared had labs and transplant clinic at the hospital so I was trying to get the kids out the door to school but both Tyler and Alyssa woke up feeling sick. I couldn't really take them both with me and Jeff had to get to the office for a meeting so I frantically called my mom and she came to the rescue. She stayed with the two sick ones while I took Jared to his appt. What would I do without my Mom? She has saved me so many times and it is nice knowing that she is with the kids when they aren't feeling well. Jared's schedule is so crazy most of the time and it really gets complicated if Tyler and Alyssa aren't at school but it does keep life exciting! Jeff said this morning that it was all my fault that our lives are sometimes a little overwhelming because I was the one who signed up for the AP class of life. (Ha Ha) I'm glad that he has a great sense of humor because there are times when laughter is the only way to survive! When I got home with Jared, I took Tyler back to the doctor and he thinks that he needs to see a urologist. Luckily we happen to know a few doctor's at Primary Children's that should be able to help him. LOL. I saw a quote yesterday that I loved. It said that we can't wait for the storms of life to pass, we need to just learn how to dance in the rain. Isn't that perfect? I hope that I will not only learn how to dance in the rain, but that I'll be able to RELISH dancing in the rain!!!

Sad Tyler

Tyler has had a rough few days. We were feeling a little encouraged after he had such a good day on Saturday, but the last few days have not been good. Nothing seems to be changing and he seems so tired and sad all of the time. I called the psychiatrist yesterday and we ended up spending FHE at his office. He wants to up this new medicine even more but I am really having doubts. He has had two days now on this increased amount and he was a mess and looked like a zombie all day today. Jeff and I are still leaning towards taking him off of everything so that we can see what his current baseline is, but it is so hard to know what to do. We aren't feeling very confident in the psychiatrist and he gets rather defensive when we ask him questions. It is hard to have confidence in him when he doesn't ever answer our questions. I have been praying and praying about what to do and since I am still having so many doubts about these medications I think that we will get him off of things and then see where we are.

The hardest part of all of this is just the tenseness that is a part of our lives all of the time. Poor Alyssa was huddled in the car with her hands over her ears as Tyler was screaming yesterday and because he was doing so badly we didn't get to go to the movie that we were planning on so she ran into the house sobbing. I got her calmed down and she seemed fine after that but I know that Tyler's instability is affecting her. I know that we can get through this trial. I know that we will find some answers for Tyler, and I am praying for the patience that I need to wait for that to happen.

Jared is still doing great. I'm waiting to hear back on how his labs looked yesterday and I am crossing my fingers that the BK virus numbers have gone down. We will see what happens there. Jeff is in Boston this week for work and the kids have spring break so I am going to take them up to Star Valley and spend a few days with Jeff's parents. Hopefully the change of scenery and Grandma's delicious food will help us all smile a little more!!!

Wonderful Spring!

What a beautiful weekend it has been! I must admit that I was feeling a little discouraged after waking up to snow several times this week, but the weekend has been absolutely wonderful! The last few days have been pretty low key. The kids had such a wonderful time playing outside yesterday and I enjoyed being able to send them outside. Tyler had a pretty good day. He played with his friend Carter for the entire day and he was happy, animated and was having fun playing a variety of things. It was so nice to see him happy for the day. He got a little anxious at bedtime but with a shower we got him called down. Who knows, maybe this new med is going to help. Time will tell.

Jared has had a pretty good week. He has had a little cold but it doesn't seem to be turning into anything to bad. He isn't drinking as much as he had been a couple of weeks though, so I am having to bolus feed him (use a syringe to put the milk through his feeding tube) every few hours to make sure he gets enough, but we still are pump free during the day. This eating business is definitely going to take a while.

Alyssa is our happy girl as usual. She is counting down to our trip and knows exactly what days we are leaving and when we will be back. She has almost earned a trip to Disneyland with her daddy (she has been working on this for a long time and she is just about there. Jeff has been dreaming of taking her on a stupendous daddy daughter date to Disneyland for a long time now. He is just as excited as she is. They will be going after school is out for the year.

Yesterday my parents watched the kids for a few hours so that we could go to a reception at BYU for the Ballroom dance team alumni. It was so nice to go kid free and we were able to see so many good friends. Listening to Lee and Linda Wakefield talk brought back to many memories. The years that I spent at BYU were so wonderful and a lot of that was because of my experiences on the ballroom team. It still seems like yesterday that we were rehearsing and heading off on tour. It has been 11 years now since we graduated and I can't believe that it has already been that long. My how time flies. I am so grateful for our wonderful friends that we have made and who we see still so often. I can't imagine not having our great ballroom friends in our lives and I'm glad that our kids are growing up knowing each other as well. Those were wonderful times!

The last couple of days have been rather boring! Can you believe that? Boring in the Call family is rather unusual and I don't really know what to do with myself! I really have been quite unmotivated this week. Last week was so crazy that I seem to not know how to do just normal stuff. There are plenty of household tasks I could take care of but somehow I just can't seem to get going. We are very excited though, because we will be spending the first week of May as a family at Camp Sunshine in Wisconsin. Camp Sunshine is a camp for seriously ill children and their families. We have to get ourselves there (Jeff's sky miles helped with that), but the camp is then free for us to attend. We get to stay in nice cabins and they feed you and there are activities and an indoor water park. I found it on-line and after the Jared's doctors sent a bunch of information in we were accepted! Jared won't remember much but I think that it will be great for the other kids to spend time with kids that have had the same experiences with a sick sibling. They are so excited! And the best part is that the camp is only 90 mins. away from where my sister Erika lives so we get to see her too! It will be a much needed get away for all of us and we are just praying that Jared will stay healthy and that we can get Tyler a little more stable so that we can have a wonderful time!

Last week I think I spent more time in my car than anywhere else. It was one of those weeks where I am grateful for a nice car to drive and I only wish that gas wasn't quite so expensive. Things are going well. Jared's feet and eyes are looking great, Tyler and Alyssa don't have any cavities (one of those tender mercies because Tyler could not handle that right now), Jared's white count is normal for now, and as of this minute, today was our only trip to the hospital! It should be a much quieter week.

I took Tyler back to the psychiatrist last week and he really felt that stopping medications would not be wise at this time but did agree that the one that we were currently trying was not working. I was absolutely ready to give up on the meds, but after talking with him I decided to trust him just a little bit longer. So, we are trying our fourth med. Jeff and I are so hoping that this will be the one that helps. Our home is so stressful these days as we are constantly walking on egg shells not knowing what will cause Tyler to lose it. I absolutely hate that Tyler is having to go through this. I want to see his smiling face and bright eyes again. I know that we will, but it is taking longer than I had hoped it would. Patience, and more patience is what I am praying for these days. I know that our prayers for Tyler will be answered, I just have to cling to that faith to get us through the most difficult days. The crazy thing is, I could handle kidney disease so much better because you know what the problem is. You do a blood test and you know what the body needs and you try to fix that. With a mental illness it is all guess work because there is no blood test that will tell you what is missing or out of whack. Tyler is cranky, mean, sad, ornery, whiny and so unpredictable and even though I know that there is something that is causing his symptoms, I just want him to snap out of it! It makes me so sad to see a nine year old having these types of emotions and thoughts. Please pray for him and for our family that we can have the patience and the insight on what we need to do for our Tyler.

It was so nice to be able to sustain our new Prophet, Thomas S. Monson, this conference weekend. Even though we were at home watching it, I felt so strongly the spirit of the wonderful members of the church throughout the world as we stood and sustained him. What a blessing it is to be living at this time and place and to have the gospel in our lives. I just hope and pray that I can teach my children and to help them gain a testimony of their own. I feel so blessed to have them and I feel such a weighty responsibility to teach them and love them. Sometimes this task seems to overwhelm me, but I know that it is possible with my Heavenly Father's help!