Thursday, January 15, 2015

The right thing for our family.

It's been a two weeks since we found out about Collins. Monday she was diagnosed with a few more things. She has two motor speech disorders. Dysarthria and Apraxia. Dysarthria meaning her vocal, throat, tongue, mouth muscles are very week. Aprexia meaning her brain thinks of the word to say but short circuits, not being able to use her motor in her mouth to get it out.
 Through all this I have been so blessed to see all the many tender mercies that have come our way.
I just wanted to share a one. My heart is full. Things I don't want to forget. Things that remind me, humble me, bless me and feel my heart with gratitude.
  About nine months ago Dave had come to me and said I think I would like to join my brothers out in Boston selling solar. Mind you we have done this before. Move to another state for a few months. For a job. But this time we wouldn't be going for a few short summer months. This time I had five kids. Both of our summer selling experiences didn't work out for us. I remember telling Dave "We are never doing something like that again!"
   This time was different. The feelings were different. I wasn't sure that I liked feeling at peace with going. I spent a day going to the temple, praying thinking, hopping I could go back to my husband and tell him, hey doesn't look like it's going to work out for us. Sorry but the spirit has advised other wise. Something I said once before we headed out to Connecticut for the summer. I sat there pondering hard, and wasn't getting what I wanted to hear. I mean, I was being realistic, I thought, and was judging on our past experiences. Those type of things just don't work out for us. But the harder I prayed something kept telling me this is the right thing for your family, you need to have faith. Then I thought OK maybe we could do it maybe I don't want to go because I'll be leaving everything behind like family, friends. I can't do that. I can't leave whats always been home for me. As days,months had past and the answer remained the same, calm and simple. I would try to pick apart the answer, questioning, how is this best for our family? But the answer has never changed. It's the right thing for your family!
     I excepted that we would move and kept putting it in the back of my mind. Will see what happens I often thought. Life continued. Having five kids sure keeps a mother busy, let alone two out of five of our children have physical disabilities which keeps our appointment book filled. The last two months have been crazy busy. I thought of moving wasn't really there. My husband how ever had been counting down. He leaves in a few weeks. Leaving me for single mother-hood for a few months.Trying to cram in Doctor. appointments so that Dave can be there with me, things he doesn't want to miss either.
          The time came to discuss Collins MRI with her Neurologist. And then it hit me! My tender mercy.  After explaining everything that was going on she asked Dave and I, if we would be interested in traveling to other states for services as other states services are more progressive. She continued to tell us how they send families all over to help with patients particular diagnosis. "Yes of course!" "What state offers the best service for what our Collins needs." we asked. (We had never mentioned that we would be moving out of state soon.) She began to tell us " Boston has the best services for what you will need for her." "Would that be something your interested in." Tears streamed down my face. My answer was clear. I now knew why the move was the right thing for my family! My tender mercy.
      I am grateful for these moments. I am grateful for the lord's had in all thing's, that he is watching over my little family. It has been so hard for the doctors to figure out what's going on often confusing them. I have sure gained an even stronger testimony that the lord has a time line for everything. Finding out when we did. This move. I am excited to get there now. And so excited to know Collins will get all the therapy she can. Being told by the doctors because now that she has a diagnosis she will receive services everyday instead of twice a month. So look out Boston and take that Dystarthria and Aprexia because this HT Cerebral Palsy beauty is headed your way and there's no stopping her and what she can do!

Sunday, January 11, 2015

Where to begin....

Where to begin.
I haven't blogged in so long.
 I haven't seen my blog in years.

As this week has been a rough one for us. We have had so many friends, family etc. call, pm me Facebook and extend  love and concern for our sweet Collins. I thought how do I go about sharing my thoughts and feelings. Do I want people to know about her? I certainly don't want to label my child and don't want others to do so either. My blog came to my mind and decided this was good time to bring it back and way to get out how I feel and to share with others, those who have asked "what's wrong!" So here goes nothing!

From the moment I had Collins there was something special about her. Not that my other children aren't special but from the moment I held her there was just this something, something I felt about her that was different.

As she stared to grow we noticed that she wasn't meeting milestones that she was supposed to. So many times every one around us would share stories with us like "my kid took a long time to do such an such"  but as a mom I just knew something wasn't right. As kind as people were to encourage me and say "she's fine, I'm sure you have nothing to worry about." In my heart. My instinct as mother. I just knew. At times I admit I would internally get frustrated, sometimes angry with people as I was often told, "she doesn't look handicap" " your making it to big of a deal." "You have to stop comparing her to your other children." I knew people meant well, but in my heart, well a mom just knows.

Visiting with our Pediatrician who agreed that something just wasn't matching up. So begin our journey of what's wrong and why. We started with simple things. X-rays. Everything was fine there. Secretly I was hoping all the things that had been said to us would prove me wrong and we would find nothing and I was just being and over dramatic mom. We did blood work and some other tests. Everything was fine there. As we continued down this path we just weren't finding anything as to why she didn't start sitting up until she was one. Why everything startled her and she would cry for hours. Why she had no interest in speaking. Why she choked all the time, once scaring me so bad I thought I needed to call an ambulance. She was so purple and I swear minutes had gone by that she wasn't getting any oxygen to her brain.
Why it wasn't until she was eighteen months she finally started to crawl, not on all fours but army crawl. Why we still aren't talking. Let me tell you something about Collins she is so smart. Often times doing things that surprised me. She wasn't meeting milestones but I knew she was a smart little girl and I just couldn't understand why.  At eighteen months we decided it was finally time to get involved in early intervention. They came. They evaluated, she scored so low on everything that we were approved. They couldn't tell us anything either as to why.

She made great strides in physical therapy. She made my worries as a mother a little less. All my what if she never, at ease. She was finally walking! It took her a year. She was progressing.  I was a proud mom. Now I don't want you think I never had faith in her, faith that she could do hard things. For the most part I am and optimistic person and a positive, up beat person. But as a mom you just worry. You want the best for your child. You want them to experience everything they can, to learn and grow.

Finally it was suggested to us that we visit with and orthopedic doctor at Shriner's hospital to be fitted for inserts and talk about a diagnosis. We meet with her and were given the diagnosis of  Hyper tonic Cerebral Palsy. An MRI was ordered. Wow, what did we just hear! When I think of someone having CP so much comes to my mind. But Collins didn't fit the mold of what I thought I knew about it. So many thoughts and feelings coursed through Dave and I. We went back to the car and both of us just cried. What did all this mean? What did this mean for Collins and her life? So many questions like, how did this happen? Collins had a traumatic birth. Cord wrapped around her neck, broken collar bone and a collapsed lung. All my thoughts raced to that day. Was that the cause? Did the doctors miss something? I wasn't sure how to feel. We collected our thoughts and reminded our self that we still hadn't had her MRI and slayed a prayer in hopes that her brain was not involved. December came and it was MRI time. Collins did so well even while getting poked for an IV she still was willing to give out hugs to all the nurses in the room, even the ones that poked her. If any one knows Collins knows she is such a sweet girl she loves to hug everyone even random strangers especially when we are shopping at Costco. Its her way of saying thank you for all the great food samples. This is something I love about her. She loves everyone and wants to love on everyone.

Christmas came, New Years came and we waited patiently waited for the phone call, the one that I wasn't sure if I wanted to hear. It came. The messenger on the phone was kind but his voice got soft and quite "I hate to inform you Mrs. Gallagher but we found somethings some brain Admiralties that are concerning. Things that we don't want to discuss over the phone. We need you to come in as soon as possible and meet with the Neurologist. Can you be here tomorrow." OF COURSE! Getting off the phone so many more thoughts. What are they going to say to us? Whats wrong that they just can't tell me over the phone? The next day came. trying to not read into things trying to not let myself go there. Our PT had said the day before we went in, sometimes when they call parents in like that it could mean something bad like a tumor. "Oh please not that!" I thought, don't go there Brooke!

We arrived and were taken back right away. It seemed like forever. Dr. Kerr came in and told us what her brain scans said. Some where in my pregnancy Collins lost some of her brain cells. Which means you have a right side and a left side of the brain and the brain cells or tracks are what connect the two together. Collins is missing half of what the normal person is born with. She wont get these back. We have a part of the brain called the Basal Ganglia, both of Collins BG are dysmorphic meaning that are shaped oddly. The BG is the part of the brain were it  forms habits and then maintains the repetition of the habit. It also controls motor and breathing. There are different parts of the Basal Ganglia one part in particular is more rounded then it supposed to be and larger in volume as well. Her head and brain are also not growing as fast as they should but so far not a huge concern for the doctors at this moment. Being told that there not sure if she will ever talk.

So there we have it. We will have to see the neurologist every 6 months to watch the growth of her head. Will be taking on a new speech therapist along with our wonderful other one. Collins starts a special toddler class or did start  last week really. And we will continue with our other three wonderful therapist at home.

We have so many questions. Lot of them which cannot be answered, but only time will tell what will become of Collins life. I have been up and down in the feeling department. Moments of tears running down my face wondering if she will have everything in life I wanted her to. I've done the guilt thing. Was there something I could have done different in my pregnancy? Feeling like not again. We already have one other child with a physical deformity's. Warner's cleft lip. Now I have another one. What have I done.

But because of my faith and what I believe in. Everything will be just fine!
I believe that Heavenly father has a plan for us, plans we may not understand. I try to look at the positive and am grateful that it could be so much worse. I'm grateful that cognitively she is just fine and she understands. She really is a smart little girl. I am grateful that when I am feeling down or scared about not knowing what's around the corner the Saviour is there by side to comfort me. I can feel it. There will be days that are hard for her. Days like now that we face every day. Days were she gets tired from walking and we have to carry her. Days were she is so clumsy because of her muscle control. I look forward to hearing her voice when ever that will be as much as I love her sweet signing I can't wait to her "I love you!" We will treat her like the rest of our other children except for she has a disadvantage that makes achievement difficult. That she can do hard things. But really everyone has a Handicap. Anything is possible and we will in courage her to work hard and support her along this bumpy road. Most of all it's this sweet little girl without knowing it, in courage's me to be her best mom I can. She has no idea what's going on. I love how she tries so hard to be one of the big kids. Doesn't want to be left out of anything, and try's so hard to keep up with them. It's this happy attitude that she carries around with her that I hope to always have something I admire in my two an half year old.

I am so grateful for My Husband. I know it has been hard for him. I feel so blessed to go down this path with him. Collins loves her daddy more then anyone. We really make a great team. There is no one better. I am so grateful for all the wonderful therapist that we have been so blessed to have in our home. They have worked so hard with Collins pushing and in couraging her to do anything. I am so grateful they have been there for Dave and I to support us call us to check on us after appointments. For hugging me when I cry. For loving our sweet Collins. We have been so blessed and are so grateful that the lord has in trusted us with this sweet baby. We are ready to dive right into this journey together and I couldn't pick a better family to do it with. Thank you for all your love and support. We are still learning so much about CP if you have questions please don't hesitate to ask.