Tuesday, September 28, 2010

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.


tiptoe mama said...

so true. It all goes by so fast. I can remember all those very similar milestones too. Now my MK is 5 years old and going to kindergarten! so grateful for all the trials and blessings along the way. Good Luck with everything in your new neighbor hood!

Wheelchair said...

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Ultra Lightweight Wheelchair

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