I remember 2 years ago

Did you know that only 2 short years ago we learned that our little Bree Annie was going to have a different life than other kids?
Most days it feels like it was a lifetime ago, sometime for fleeting moment I forget she has some difficulty. Other days, it feels like I am learning the news for the first time. I remember having to hold her in my arms while she was given and IV. I remember the look on Luke's face when she was screaming for us but we couldn't go to her. I remember asking the nurse to please give Bree her kitty blanket as a little bit of comfort as she laid on a table for her first MRI. I remember the look on the techs face and how 3 nurses were looking at the screen when her pictures first came up. I hated that she fought the drugs so hard they had to give her more. I remember trying to be strong for Bree and Luke but telling Luke I was going to the gift shop to get some chapstick, because as we were waiting for her to "come our of it" her lips were getting really dry. It was a good excuse to go cry in the hallway and then get the chapstick. I remember hating that night because they told us we had to watch her and make sure she didn't stop breathing.
I can remember like it was this morning, sitting in a small office looking at a computer screen of black and white fuzz. Trying to wrap my own mind around what the very sweet, compassionate, knowledgeable doctor and doc-in-training were telling me. Their words still sit with me... as if it was coming straight from our Heavenly Father. "She is so charming and beautiful. She will make it through this just fine. I will not lie. This is will be hard for you all, this will be a lot of work for you all. I do not say this to make you feel bad for others, but to give you encouragement to move forward, this is a relative mild case and she will live a full and happy life." That is pretty much all I can remember them saying in that meeting. They asked if we had questions, I do not remember if we asked any. I remember calling my Dad, he is my medical go-to guy. I don't remember what he said other than "we are here for you", but I do remember the feeling I had when he calmly and gently talked.

Looking back I see Heavenly Father's hand in it all. She was born is scary, very scary circumstances. But was okay after that, as if it were a precursor, our path being paved. A few months later while talking to her OT and telling her the "birth story" she was very inspired to say "what if she had a stroke due to all that stress?" I talked to my very inspired doctors who wasted no time in getting her to be seen at Primary's. Her doc made the appointment himself. When the results came back, he wasted no time in researching, calling, talking, and learning all he could. Not too long after that some very,... well there is no word to describe how incredible this group of students are, more specifically 2 girls are. They put together and organized a fundraiser for Bree. I remember getting a text from my Dad, telling me to come out back. He told me that OHS HOSA (Ogden High School Health Occupation Students of America) were looking for an alumni to offer a service for. They learned of our news, that we had just learned about a few week before, and asked if they could help. The tears rolled down my face. The love I have for those students is beyond words, and the love we felt from the entire community that donated prizes, and matched funds was truly humbling and overwhelming. More than the monetary help (though very appreciated and greatly needed at the time) it was the love that was shown to us, the support of a community, the true concern and love from a couple a girls and the love of whole ton of high school students. That is what I needed. To know that I had help and a place to go.
Bree's PT told me about a blog of Mom's going though what I was going (what I am going) though... a very good place for support.

Today Bree struggles. The transition of moving has not been great for her progress. I have had a hard month of trying to track down a new PT, because she needs a new DAFO and she is walking from toe to ankle instead of toe to heal. She gets hurt a lot because she is not using her muscles correctly. Her vocabulary is growing daily, which is AWESOME, but she is not understood, which has caused a ton more meltdowns, fights and frustration. I have a few fears of what is coming, but I my neighbor had the right contact info I needed and Bree will be assessed for Early Intervention, Preschool the end of October. I have contacted Timpanogos Hospital's PT program and she will be starting that hopefully next week, we are having a hard time getting a referral. I have been going back and forth on swimming therapy, it seems perfect for her, but finding the right class is a a problem. I don't want to enroll her in a regular class because she is
A. Fearless, she will jump in and just expect to float and that doesn't work really well in a class with one teacher.
B. She will not only need to learn how to swim but to add PT in there... which a regular class doesn't do. So I would like to talk to the PT next week about it.
Her OT skills are really doing nicely, but that is something I work with her at home. She can hold a piece of paper and cut one time, which is HUGE for us. I have noticed that she has started using one hand to hold paper and the other to color, YIPEEE! When we cook things, she can put her weak arm around a large bowl and "hug" it while stirring with the other, so she is really coming along way in OT. So there is a little sliver lining to my ever growing dark cloud. I have said it before, but she is a trooper and never quits... even when she should. She is still having a hard time learning her physical limits, boundaries and stranger danger. But we talk about it a lot and Em and Jer are really good about reminding her in a sweet way, and that helps me!
So there it is. 2 years and give or take 2 weeks ago... I went back and read the post from that time. I read the comments..... Thank you all for being so supportive and sweet. All those kind and positive words really impact me still. I am very blessed to be surrounded by great people.

It's been a really long time

It's been a really long time since I posted on here. Mostly it was due to summer and all the kids being home. It was pure craziness trying to manage everything. Although now that school is in session, things aren't any better, just different.

I am currently 27 weeks pregnant, and so far my dream pregnancy has not happened. I have had problems from about 10 weeks on. I do have my sugars from the gestational diabetes under control finally, enough insulin will do that! I have had contractions and I am taking meds to keep them under control and doing scheduled resting for now. There is alot of concern about what is going on, but I have made it this far. My OB just really wants me to make it to Thanksgiving, which puts me at 36 weeks. If I have her that early.. or earlier, we are looking at a NICU baby, but I hope not. The odds are not in my favor. Oh well, such is life.

We have two special needs kids. This is not new. But wow! This school year is presenting some challenges managing two of them with school. Trevor, our 8 year old (autism) is doing relatively well at school, but home is another challenge. With some one-on-therapy, group therapy, meds, and implementing a very strict schedule, I think we are on the right track. At least I hope..

You add in Josh, our 3 year old (multiple diagnosis) and preschool... and I think it's what threw me for a loop. He is doing great in special education preschool, but it just adds another thing on top of everything to worry about. Between doctor appts, speech, meds 4 times a day, feedings, him finding out how to pull out his G-tube, counting calories, trying to keep him healthy, it has taken me longer to adjust to a school schedule on top of that. But it's doable... just busy.

Even a year ago, I would not have imagined my life so crazy. Everytime it seems like it can't get any more chaotic..... life changes and it does. Anyone else feel that way?

letter to parents

Let me introduce you to my daughter, Mary.

Mary is a student in your child’s class.  She has been sharing information about herself with the children via her DynaVox.  Her Dynavox is her augmentative communication device – it is a computer that can talk when she activates it with a switch.  She is learning to communicate that way because she was born with Arthrogryposis and cannot use the muscles in her mouth very well.  Because Mary’s mouth muscles don’t work very well, she has a tube in her neck for breathing.  It is called a tracheostomy – we call it a trach (pronounced trake.)  Sometimes Mary needs secretions suctioned out of her trach.  It doesn’t hurt her and it isn’t messy when she needs this.  She has a nurse with her all the time and her nurse uses the suction machine to help Mary.   She also uses a wheelchair because her joints and muscles in her legs don’t work the same as most people.  Mary’s wheelchair is purple, one of her favorite colors!  Some of the other things she likes are horses, Dora, swimming, playing outside, and reading. 

If you have questions or concerns about Mary’s condition or friendship with your child, please feel free to call me.

Chaney, Mary's mom

This is the letter I wrote tonight for Mary's teacher to give her classmates' parents.  I'm pretty pleased with the way it turned out.

Gluten-Free, Casien-Free

Has anyone done a gluten-free casein-free diet? And if so, did you see results with your kids? A therapist suggested it to me, but I'm hesitant to go all out. I can easily replace other grains with the wheat and I've started to do that more often anyway...but the dairy. I'm not sure I can commit to taking that out of her diet.

Any experience with this would be helpful.

A Bit of Appreciation

Lately I feel so grateful. There are certainly plenty, and I mean PLENTY of things to be ungrateful for, but I've chosen (for my own happiness) to focus on the other things -- those things for which I am grateful. Because, for me, it is that: A choice. Sometimes a difficult one, but I have found that when I choose an attitude of gratitude over, well, an attitude of non-gratitude, I am happier. Another happy effect is that it can also be quite freeing.

So, one thing that I've been overwhelmingly grateful is for those who take care of my sweet Sammers. We have been so so blessed. Our doctors (all but a few) have been phenomenal. And I'm talking, phenomenal! They answer my questions, call me back -- what a concept, are interested in her, want to help, are compassionate, etc. Samantha's teacher and teacher aides are incredible. They love her so much and are so gentle, loving, and plainly perfect for her. Her therapists (PT, OT, and Neurodevelopmental) are all three fabulous! To be honest, I wasn't so sure about our PT when we first moved. I wasn't thrilled. She's new and I could tell she was uncomfortable with Sammy -- she is quite an unusual case I suppose. But I have grown quite fond of her as she has become more comfortable with Sammy. All three of them have taught me exercises to do at home, work well with Sammy during therapy, and are some of her biggest fans! Finally, Samantha attends a daycare once a week after school so I can tutor from home. She's only there a few hours, but this daycare is set up for "medically sensitive" children. Those nurses and attendants there are awesome, for lack of a better word. They love love love her. They are patient with her. They laugh with her and play with her. Sammy loves it there.

I recently started thinking about all our kids. At some point, there is a time when we have to "let go" a little bit. When our kids go to school, we turn them over to other adults. We hope things go well, and hopefully we've taught them how to be, or start to be, socially successful, how to follow instructions, etc. But when we have little kiddos who can't tell us how the day went, it's easy to worry. We have to go off of what we know, and sometimes, we don't know much. Today, as I read my friend's blog...seeing her little girl smile with delight at preschool, I felt so much gratitude for the whole team of people who help take care of my little Sammy. There are few things that are more precious than our children, and it's so comforting to know that when she's not in my own hands, she's still in good ones.