tag:blogger.com,1999:blog-86753694653344682082024-03-13T03:30:08.964-07:00The MacDonald FamilyThe MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.comBlogger204125tag:blogger.com,1999:blog-8675369465334468208.post-69871845096200796502013-09-05T18:35:00.003-07:002013-09-05T18:35:55.795-07:00Quest for a Cure 2013!!!<div class="separator" style="clear: both; text-align: center;">
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We're walking again to CURE Rett Syndrome!!! Come on out and join Annie's A-Team on Sunday, Oct. 6 , 10am at the beautiful Inglenook Park in Southfield! For those who haven't joined us in past years here's what you can expect - a TON of food, a short 1K walk, an amazing raffle with loads of prizes, a silent auction, a Grand Prize (previous years it's been an iPad, this year's prize is TBA), a clown for the kids, balloon animals, face painting, pumpkin decorating, and did we mention a TON of food??? It's a great morning and don't worry it won't take up your entire Sunday, just a couple hours to show your support for our little hero Annie!!! If you can't make it, you can always support Annie's A-Team by donating online <span class="Apple-style-span" style="font-size: large;"><a href="http://www.firstgiving.com/fundraiser/bridget-macdonald/anniesateam">HERE</a> </span>and read below for more information about the research that has the potential to CURE Rett Syndrome at the genetic level, this is what we will be funding this year. <br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri; font-size: 17.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-size: 12.0pt; mso-hansi-theme-font: major-latin;">All
donations will go to Ben Philpot, a researcher at the University of North
Carolina at Chapel Hill, and his project to activate the silent MECP2 gene in
Rett Syndrome.<span style="mso-spacerun: yes;"> </span>All girls with Rett
Syndrome have 2 copies of MECP2 on each cell, a healthy copy and a Rett
Syndrome copy.<span style="mso-spacerun: yes;"> </span>Dr. Philpot is
screening drugs to “turn on” the healthy MECP2 gene, curing Rett Syndrome at
the genetic level.<span style="mso-spacerun: yes;"> </span>$156,000 is
needed by December 2013 to fund this project.</span></b><b><span style="color: #262626; font-family: Calibri; font-size: 17.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></b></div>
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<b><span style="color: #262626; font-family: Calibri; font-size: 15pt;">Why Ben Philpot?<span> </span></span></b><span style="color: #262626; font-family: Calibri; font-size: 15pt;">Ben Philpot’s lab will screen for compounds that can reactivate the silent (healthy) MECP2 gene already in a girl with Rett.<span> </span><b>MECP2 has proved to be very complex, with this approach we don’t need to understand what MECP2 is responsible for we just need to turn it on</b>. <span> </span>Ben has been successful in finding a drug to activate the silent copy of the gene responsible for Angelman’s Syndrome.<span> </span>Because he is familiar with this type of research and has been successful in the past we are very hopeful that his, now streamlined, approach will move faster, be more efficient and has promise of being successful in curing Annie, all girls currently suffering with Rett and the 16 girls that continue to get diagnosed every day. To watch a video about this research please visit:<o:p></o:p></span></div>
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<a href="http://www.youtube.com/watch?v=UWRQRVfGwyE&feature=share&list=PLzLcLe4bAUoLje1eG_CgTHnA4R3t-j6Kx#http://www.youtube.com/watch?v=UWRQRVfGwyE&feature=share&list=PLzLcLe4bAUoLje1eG_CgTHnA4R3t-j6Kx"><span style="font-family: Calibri; font-size: 15pt;">http://www.youtube.com/watch?v=UWRQRVfGwyE&feature=share&list=PLzLcLe4bAUoLje1eG_CgTHnA4R3t-j6Kx</span></a></div>
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<b><span style="color: #262626; font-family: Calibri; font-size: 15.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt; mso-hansi-theme-font: major-latin;">Rett Syndrome:<span style="mso-spacerun: yes;">
</span></span></b><span style="color: #262626; font-family: Calibri; font-size: 15.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt; mso-bidi-font-weight: bold; mso-hansi-theme-font: major-latin;">Is a
spontaneous, genetic neurological disorder that affects girls almost
exclusively.<span style="mso-spacerun: yes;"> </span>Annie was born
healthy, grew and developed normally until about 12 months old when she
suddenly regressed, loosing all hand function, ability to ambulate and every
word she spoke. Girls with Rett remain cognitively age appropriate, however
become trapped in bodies that are no longer able to function properly, they
require 24 hour care for the rest of their lives.<span style="mso-spacerun: yes;"> </span><b>Rett Syndrome has the symptoms of autism, cerebral palsy, Parkinson’s,
epilepsy, and anxiety disorder all in 1 little girl.</b><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<b><span style="color: #262626; font-family: Calibri; font-size: 15.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt; mso-hansi-theme-font: major-latin;">Hope:<span style="mso-spacerun: yes;"> </span></span></b><span style="color: #262626; font-family: Calibri; font-size: 15.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt; mso-bidi-font-weight: bold; mso-hansi-theme-font: major-latin;">Since it’s discovery in the
early 1980’s the research in Rett has brought hope.<span style="mso-spacerun: yes;"> </span>In 1999 Dr. Zohgbi discovered the gene that causes Rett,
MECP2.<span style="mso-spacerun: yes;"> </span>The fact that we have a
gene, a single gene makes research into a cure easier.<span style="mso-spacerun: yes;"> </span>In 2007 Dr. Bird’s lab reversed Rett
Syndrome in a mouse model.<span style="mso-spacerun: yes;"> </span><b>This
proof of principle experiment shows that if/when MECP2 is restored symptoms of
Rett Syndrome reverse, essentially curing the disease</b>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #262626; font-family: Calibri; font-size: 15.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 13.0pt; mso-hansi-theme-font: major-latin;">Thank you</span></b><span style="color: #262626; font-family: Calibri; font-size: 15.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-bidi-font-size: 13.0pt; mso-hansi-theme-font: major-latin;"> for making a difference in the lives of these precious
girls!<o:p></o:p></span></div>
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The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-28827317707647510522013-05-06T04:16:00.000-07:002013-05-06T04:16:58.547-07:00Healing Her Bones. Rett Syndrome and OsteoporosisSo ever since we got the diagnosis of Rett Syndrome 7 years ago I have been <s>obsessed</s> concerned with Annie's bones. I knew a sweet girl when I was going through junior high school that had Rett Syndrome (yes, I know, God's foreshadowing is astounding). I remember how beautiful she was, in her chair, coming down the hallway, always with a smile, she had beautiful hair and always the cutest clothes. But I also saw how fragile she was, how thin and how....... fragile. <br />
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I've talked about <a href="http://annamarymacdonald.blogspot.com/2011/08/whats-keeping-me-up-at-night-these-days.html">Annie's bones before</a>. We have had Annie on bone supplements since she was diagnosed. We've known girls with Rett Syndrome who have broken bones just transferring from the wheelchair and I was so determined to not allow that to happen to my Annie. <br />
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When Annie was about 2 years old she started to have some pretty severe digestive issues. We put her on a GFCF (gluten free, casein free) diet. Hoping that it would help with her digestive issues and cause her to gain some weight but it didn't. She was loosing weight and was so tiny to begin with. We actually started seeing a GI specialist and told him that we needed a g-tube. He, of course, agreed. It was the best thing we ever did for sweet Annie, she began to grow and thrive and was so much healthier than we could have ever imagined. <br />
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After the G-tube we tried to introduce some dairy back into our sweet girls diet but we found that she was incredibly sensitive to it. She was able to tolerate cheese and ice cream but anything beyond that, milk or yogurt, she would throw right up. <br />
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Of course I continued to worry about her bones and upped her bone supplements. We had annual blood draws that showed us that Annie's vitamin D level was normal. That was great but Mothers instinct, I wasn't convinced so I started asking for Dexa Scans - which are bone scans that can detect osteoporosis. Yep - found it! Annie failed her first Dexa Scan and was diagnosed with osteopenia when she was just 5 years old. <br />
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We were told that Annie had osteopenia because she couldn't walk. We were told to get her up on her feet at much as we could, weight bearing exercises build bones. I wasn't convinced that this was only reason for the fragile bones. We get Annie onto her feet as much as we could each day, usually for several hours, and she was still having issues. I knew that this was an issue with malabsorption. <br />
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I started doing more research but came up empty. I couldn't find the reason for her bones to be so brittle and it was so frustrating. As the years and months ticked by Annie's Vitamin D levels started to climb, so much so that we need to decrease her Vitamin D supplements. As we decreased her supplements her vitamin D levels continued to climb and her bones continued to deteriorate at a very alarming rate. <br />
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I talked to every specialist that we were with and made appointments with additional specialists. I couldn't figure this out and neither could they. I was told by some specialists to ignore it, by other that they didn't know what to do and others who had ideas of putting Annie on medications that would increase bone density but they were contraindicated for children and the side effects were bad. <br />
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I knew in my heart that her problem was she was not absorbing these nutrients, we were giving her enough calcium and vitamin D and vitamin K and Boron and magnesium and all the other vitamins and minerals that are essential to bone growth she just wasn't absorbing them.<br />
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I continued to search and research until one day <a href="http://products.mercola.com/vitamin-k/">an article</a> came into my inbox. <span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 16px; line-height: 22px;"><strong style="font-weight: bold;">The bottom line – vitamin K is the ‘key’ that unlocks the door from your bloodstream to let calcium flow into your bones and bone marrow.* (mercola.com) </strong></span>Purely Godsent. As I read through this article I learned that there were 3 forms of Vitamin K, K1, K2 and K3. I was giving Annie vitamin K but not K2! So, we ended up taking her off all of her supplements, her blood levels were very high in vitamin D and her serum calcium was starting to rise so we had no choice. We started Vitamin K2 (from Mercola.com) right before Christmas and by March our Vitamin D levels had plummeted from 91 to 60! The Vitamin D sitting in her blood stream was now able to enter her bones! <br />
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We waited another month and decided to do another Dexa Scan. Our results - not a continued decrease in bone density, like we had seen in years past, and not even a same Z-score as the year before but actually an improvement in Annie's bone density!! Yes, you read that right, an improvement!!!<br />
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This momma is overjoyed! Since then we have started a Vitamin D supplement again and Annie's serum Vitamin D levels are still within normal limits which means that her sweet little body was starved for Vitamin D but it had no way of entering her bones without the Vitamin K2. Now that we have the K2 we are able to supplement with additional vitamins and minerals and will hopefully continue to turn this osteoporosis around until we have bones that are as strong as the typical 8 year old that she deserves to be. Annie's Spine and Femur's are still pretty brittle so we are VERY cautious about breaking her hip. I'm hoping that these 2 areas of her body just need a little more time and nutrients to build up their strength. <br />
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*Disclaimer: Vitamin K2 worked for Annie but it may not be for every Rett Girl or child with osteoporosis. Please check with your child's doctor before starting any vitamins or supplements. The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com1tag:blogger.com,1999:blog-8675369465334468208.post-5603896245642764582013-05-05T11:26:00.000-07:002013-05-05T11:31:14.075-07:00Shattered, for a purposeI have this water pitcher in my dining room. People have asked me about it, not because it's such a beautiful piece but becasuse it's been completely shattered and then hot glue gunned back together. Look at the pic below, I'm not talking just a missing piece but seriously, completely broken and then glued back together.<br />
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Of course the idea is not my own (I'm not that clever) but from a book by Angie Smith (who is just genious!) called <a href="http://www.amazon.com/Mended-Pieces-Life-Made-Whole/dp/1433676605/ref=sr_1_1?ie=UTF8&qid=1367777948&sr=8-1&keywords=mended">Mended</a>. In this book Angie explains that her purpose for being "broken" by the things in her life are so that Jesus could shine through her life - thus the broken pitcher allowing light to shine through the cracks. </div>
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This image hit me so hard that I just HAD to experience it for myself and so I went out, bought a VERY cheap pitcher (honestly, it was $3.50 on clearance because it already had a crack, Talk about irony.)</div>
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I spent an entire night smashing it and then glueing the whole thing back together (not an easy feat when you get to the small parts). It was tedious but incredibly therapeutic. It hasn't taken away all of my anger and saddness about what has happened to our family but I can say that it has put things in perspective and it is always there, sitting in our dining room as a consant reminder of what our family has been through and, more importantly, why. </div>
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People see that pitcher and ask about it, I haven't really come up with a great answer yet, I have just said "it's a symbol of my life" but that explination doesn't do it justice because people say "Awww, I'm so sorry that your life feels like that". They don't get it, I didn't explain it right. </div>
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What this really shows is that my life was a complete pursuit of my own. My own wealth, my own happiness, my own dreams, my own vision of life. Somewhere, in my own pursuit of desperatly trying to create all of these dreams for myself God stepped in and smashed it all. He opened my eyes to a marriage that was very one sided, parenthood that was full of false ideals, my image of how life is "supposed to be" and the so called solid rock that I stood on was nothing but sifting sand. </div>
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God showed me, what really mattered. I couldn't be more blessed that He stepped in when He did. Each and every time He shattered my life He did it so that His light could shine through me. Maybe not right away, but through the anger, the sadness and the tears all those pieces were picked up and glued back together and the cracks and spaces allowed His light to shine through. What God breaks He puts back together stronger than it was before. </div>
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By shattering my life with Rett Syndrome, my marriage has become stronger. We no longer have false expectations of eachother. I have come to an understand that my husband is not in charge of my soul happiness. His and my own emotions of course will steer our family in certain directions but despite the difficulties and hardships that will come to us we choose to see that any hits to our family are not set backs but are additional chips and cracks in our pitcher. My relationships have gotten stronger, my eyes are opened to what really matters now. Could it be that each and every lesson that God wants us to learn comes to us in a form of brokenness? These cracks and holes and even the shatters are part of how He is trying to use us.</div>
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A few weeks ago our church had a speaker that moved me even further on in my walk towards brokenness. The message is below and I encourage you to listen to the whole thing through. </div>
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I realize this message is intended to make those who are ready, able and called to MOVE into what God has called them to do, but for me, I believe it was a confirmation in my own walk, my own life and my own struggles that God is using my life and my family for His purpose. </div>
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I live in a place where I see people struggle all the time. It breaks my heart when I see a real struggle - a family who realizes they have a child with Rett Syndrome - a child they thought was perfect and whole and then to come to the reality that they will have to care for every single need of this child for the rest of their life. A friend who's husband has gone into cardiac arrest and they worry about their families well being and future. Other families break apart in divorce, the moms are now called to be both the father and the mother. Cancer diagnosis, infertility, the death of loved ones and the list goes on.<br />
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When we open ourselves up to the world, when we make ourselves vulnerable to what is around us, it's amazing what we see. There is so much desperation and sadness in our world. When you flip on the news or check your inbox or even just turn on the radio you are sure to be hit with a bunch of depressing, sad news. Life is sad, it's not fair, and there are always negative things to dwell on.</div>
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We have a choice to walk through this world as broken pieces laying around or we can choose to use our faith as the glue that puts our pitcher back together. You can see those who choose the broken pieces, those who choose to complain about their circumstances, those who allow even simple misunderstanding to destroy their marriage or common colds to rock their lives. And the mended pitchers who deal with far worse circumstances but hang onto hope and forever have their heads held high in Gods grace. <br />
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The choice is ours. We can strive to live that perfect, easy, comfortable life. Daily chasing after the bigger house, the nicer car, the larger income, the designer bag. Or we can choose to trust in the one who made us. The one who allows for heartaches so we can show His love. The One that brings the rain because that's the only way we will see the flowers. The One who is using us because He knows this life is just a fleeting moment and our real treasures are waiting for us in heaven.<br />
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Of course when the rains hit there is a time of sorrow, of adjustment, of questioning but to be able to pick yourself up and be used is what this life is all about. Even with the struggles, this life is so much more than we deserve. I'm trying to get to a consistent place where I am no longer chasing after anything in this world, where I'm not trying to fix everything to make my life perfect, I want to get to a place where when life gets too easy I wonder, "Has God decided not to use me anymore"? A place where I embrace the hardships because I know that they are there for His purpose. </div>
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">“Life can only be understood backwards; but it must be lived forwards.” - Soren Kierkegaard</span></div>
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The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-38906307316387870942013-03-25T10:44:00.001-07:002013-03-25T10:44:46.761-07:00I'm WornMost of the people reading this blog are momma's. Some to typical kiddos and some to special ones but regardless we can all relate to the feeling of being worn. Just so physically and mentally spent that you can't even think straight.<br />
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So a couple weeks ago we were hit pretty hard with some big life changes. These changes included the realization that we would be loosing several amazing people in our support network. I want to cry just writing those words. Life with Rett Syndrome is hard, very hard. Hard for our family but, more critically, hard for Annie. We have been so blessed that in the past 7 years we have been able to find and build a wonderful support system for her. We've had people come and go but over the years we've come to understand and know who was in this WITH us and who was doing their "job". Regardless of weather the person is with us for 1 month or several years it's a feeling you get when you know you can place your heart in someone elses hands. Today, I'm heartbroken to say that 3 of our supports that were WITH us in this journey will be changing their positions in our lives. 2 will be moving on to some amazing opportunities and life changes that we are so happy to see them enter into. and 1 we are leaving her because of an opportunity of our own that has come to fruition. Regardless of the circumstances the fact remains that this is change. Scary change. Change from a support system we have come to know, love and rely on.... to the unknown. I don't do well with change. I like comfortable but that's not always in my control, infact, that's never in my control. <br />
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Dealing with this change, other huge issues have also come up that threaten our family. It's something we have known about for a little while but it's another worry, another stress. An opportunity that we have been anticipating for several years has also come up. I thought we would be thrilled because this is what we have been waiting for but unfortunatly it has brought up more questions than answers and has left me wondering weather we are doing the right thing for our family and in the eyes of God. This opportunity has also come with tons of paperwork and reexplaining all that Rett Syndrome has taken from Annie, all that she goes through and how our family has been effected. I've read, heard and spoken words that make me shake with fear, anger and saddness because it was never supposed to be this way and it shouldn't be this hard. 7 year old wounds that are still fresh are once again ripped open. I'm trying to find my footing in all of this but it's hard. It's so much. All at once. My body has felt the pressure and just to add to all of this I came down with a sinus infection that has shown no mercy.<br />
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I have been hearing this song on the radio lately, Worn by Tenth Avenue North, but it wasn't until all of this that I took these words to heart: <br />
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As I process all of this I'm realizing that despite our fears we are in good hands. God knows what we need. He is faithful but we need to walk by faith even when we can't see what's ahead for us. I also firmly believe that when God makes changes they are for the better. We've been through the fire before and we always come out a little worn but also a little better and a little stronger. We don't know what's in store but I'm certain it's all part of a great plan. Maybe this is just another step closer to our cure. Maybe our supports are changing because we won't need supports much longer and these amazing people that have been with us will see the miracle and be forever changed. <br />
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<span class="Apple-style-span" style="font-family: verdana; font-size: 12px;"><span class="Apple-style-span" style="font-family: Times; font-size: small;"><span class="Apple-style-span" style="font-family: verdana; font-size: small;"><span class="Apple-style-span" style="font-size: 12px;"><span class="Apple-style-span" style="font-family: Times; font-size: small;"><span class="Apple-style-span" style="font-family: verdana; font-size: 12px;"><span class="Apple-style-span" style="font-family: Times; font-size: small;">My prayer: you have seen us through so much change and this change always comes from you. You give and you take away. </span></span></span></span></span></span></span>You know what we need and you will supply us. You have brought amazing people into our lives, however, people are always changing and YOU are constant. Help us to keep our eyes fixed on You. </div>
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The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com2tag:blogger.com,1999:blog-8675369465334468208.post-79359898719115220642013-01-04T06:01:00.002-08:002013-01-04T06:03:00.129-08:00Little Celebrity!<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> On December 22 there was a beautiful little angel face that graced the cover of the Detroit News. That was my Annie!</span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I'm not quite sure how I managed to finagle my way onto the cover as well but there I am too. The HERO of this story is Brian Dalton! Brain has been helping us raise funds for Rett Syndrome for 3 years now, however, this year he's going well above and beyond and competing in the </span><a href="http://www.escapefromalcatraztriathlon.com/"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Escape from Alcatraz triathlon</span></a><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">.</span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br />Brian says "As far as </span><span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">as triathlons go, it doesn't get any bigger or more challenging that the Escape From Alcatraz race. The race is also symbolic of how the girls are in essence a prisoner in their own bodies. Their minds are free, but their bodies are broken. So, to help out, I'm going to put myself and my body through one of the most challenging races I could find." </span></span></div>
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">You can read our blog post about how Brian and his students have touched our lives </span><a href="http://annamarymacdonald.blogspot.com/2012/12/a-hero.html"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">HERE</span></a><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">.</span></span></div>
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">You can also read the Detroit News Article </span><a href="http://www.detroitnews.com/article/20121222/METRO02/212220342/Rochester-teacher-takes-triathlon-aid-girl-Rett-syndrome?odyssey=tab"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">HERE</span></a><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">.</span></span></div>
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">To make a donation and help Brain reach his goal please check out the right side of this blog Titled "Escape From Alcatraz" it will take you right to Brain's razoo site where you can make a donation. </span></span></div>
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">A huge thank you to Brian for all that you are continuing to do for our sweet Annie, and to the Detroit News and Shawn Lewis (author) for seeing worth in this wonderful story, for publishing it, and for putting us on the front page for all to read! </span></span></div>
The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-24080939568784405102012-12-03T19:43:00.003-08:002012-12-03T19:52:17.891-08:00A Hero!<div class="separator" style="clear: both; text-align: center;">
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<a href="http://3.bp.blogspot.com/-IpobnOREsjE/UL1vg4pmfFI/AAAAAAAABvE/YZX9Tq4A46I/s1600/B&N9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">3 years ago at Caribou Coffee in Rochester a man named Brian Dalton walked in, ordered a coffee and happened to see a <a href="http://www.girlpower2cure.org/">Girl Power 2 Cure</a> flower. My mom had gone to several coffee shops earlier that month and set up <a href="http://www.girlpower2cure.org/garden">Garden's of Hope</a>. We had hoped to raise a decent amount of money with this quick and easy fundraiser but we were about to be pleasantly surprised. </span></div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Brian was intrigued when he read about Rett Syndrome and the <a href="http://www.girlpower2cure.org/">Girl Power 2 Cure</a> organization, it was good timing considering his 8th grade class was looking for an organization to benefit from a fundraiser they were doing at our local Barnes and Nobel Book Store. </span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Brian emailed Ingrid Harding (founder of Girl Power 2 Cure) and Ingrid got us in contact with Brian. A few months later Annie and I were welcomed into Brian's 8th grade class and were completely blown away with the amount of kindness, support and love we were shown. The classroom was decked out in Girl Power flowers, even the kids faces were tattooed with flowers. Annie was given gifts and then we watched the most beautiful, heartwarming video that several of the kids made about Annie and her fight with Rett. We were blessed!</span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">The kids each made projects that they displayed at Barnes and Nobel Bookstore a few weeks later. During the time that they were displayed the community was invited to come in, hear the kids present their projects and then 20% of all proceeds that night were given to Girl Power 2 Cure. </span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">That was 3 years ago, this event has become annual. The kids do more and more each year and raise more and more money. Last year Brian was able to bring in Fox 2 News and we were able to tell thousands about our little known disease, Rett Syndrome. </span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Times;"><a href="http://www.myfoxdetroit.com/story/18440508/middle-schoolers-hosting-rett-syndrome-fundraiser#.UL1u2Ypf4Rs.blogger">Eight graders raising money for Rett Syndrome research - Fox 2 News Headlines</a></span></span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">As if all this wasn't enough Brian has blown us away again. This year he is not only continuing the Barnes and Nobel tradition but he is taking it a step further and competing in the <a href="http://www.escapefromalcatraztriathlon.com/">Escape from Alcatraz triathlon</a>. </span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Brian says "As far as </span><span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">as triathlons go, it doesn't get any bigger or more challenging that the Escape From Alcatraz race. The race is also symbolic of how the girls are in essence a prisoner in their own bodies. Their minds are free, but their bodies are broken. So, to help out, I'm going to put myself and my body through one of the most challenging races I could find." </span></span><br />
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="line-height: normal;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Here is the explination of the triathlon: "The 2013 Escape from Alcatraz Triathlon features a 1.5-mile swim through frigid waters from Alcatraz Island to the shores of the St. Francis Yacht Club, a grueling 18-mile bike ride, and a demanding 8-mile run through the trails of the Golden Gate Recreational Area. Set against the natural beauty of San Francisco, this thrilling triathlon is a virtual postcard of the City by the Bay." YIKES! </span></span></span><br />
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">To think that just 3 years ago Brian didn't know anything about Annie or Rett Syndrome and today he was working selflessly to help fund a cure is such a blessing. Brian is a full time teacher and has 4 children of his own and still found the time to help our cause. What an inspiration he is to his family and his students and a Hero to our girls suffering from Rett Syndrome! </span></span><br />
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Will you help our hero and support him as he sacrifices so much for Annie and all the girls suffering with Rett Syndrome? Make a donation<a href="http://www.razoo.com/story/Mr-D-S-Jailbreak"> HERE</a> and leave a message to let Brian know what an inspiration he is!</span></span><br />
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<span class="Apple-style-span" style="color: #666666; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: 13px; line-height: 16px;"><br /></span>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-27598247405583756842012-11-09T09:01:00.002-08:002012-11-09T09:01:36.969-08:00Quest for a Cure Update!<div class="separator" style="clear: both; text-align: center;">
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Many of you came out and walked with us at our 3rd Annual Quest for a Cure! Thank you thank you so much to Annie's A-Team and to everyone who donated. I'm thrilled to tell you that we raised over $32,000 for Rett Research!!! That pushed us to over $100,000 total raised in the past 3 years! </div>
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I just want everyone to know how important this is. Rett Syndrome is a rare disease and is fairly "new". We get a very small amount of government funding and that is only for basic research, not the kind of cutting edge research we need to CURE diseases. <br />
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Rett research has made amazing advances in the past few years - 1999 the discovery of the gene that causes Rett Syndrome (MECP2), <a href="http://www.rsrt.org/research/understanding-the-2007-reversal/">2007 the REVERSAL of symptoms in a rett mouse model</a>, 2012 <a href="http://rettsyndrome.wordpress.com/2012/03/18/bone-marrow-transplant-stops-the-development-of-symptoms-in-model-of-rett-syndrome/">bone marrow transplant arrests sypmptoms of Rett Syndrome.</a> Researchers believe that Rett Syndrome IS cureable in our children, however, funding research is expensive. The science is there but the funding is not. Money is holding us back from finding our cure and that is not acceptable. <br />
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We choose to fundraise for the <a href="http://www.rsrt.org/">Rett Syndrome Research Trust</a> because they are fiscal very lean. 96% of your donation goes directly to research. When you donate you are not paying someones salary or the light bill you are infact making an immediate difference in Annie's life and the lives of the girls pictured below. For that we are truly greatfull!<br />
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<br />The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com2tag:blogger.com,1999:blog-8675369465334468208.post-22861935642180138602012-11-09T08:50:00.000-08:002012-11-09T08:50:06.300-08:00HomeSchooling Update!<br />
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I know, I know, I never update anymore. I'm so sorry! With school for the kids and work and Birthday's and our Quest for a Cure walk, and soccer and cub scouts and... well, you get the idea, it's been so crazy busy!!! But, thankfully we are starting to slow down a bit and I really want to let everyone know how Annie is doing!</div>
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For starters let me just say that I can't even imagine having Annie back in school right now. She is doing AMAZING! She's learning so much, she's thriving, she's growing, she's awesome! I'm so blessed! This summer we discovered that Annie could read! Our goal for this year is to determine what reading level she is at, have her continue to practice reading and expand on it! Literacy is our top concern and we are working on it with doing tons of reading, flash cards with site words and using our ipad apps with stories that highlight the words. </div>
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Annie is also excelling in her math skills - we have a "shoot for the stars" math wall, Annie gets a star each time she shows us she is able to skip count. So far we have a star up for counting by 1's and counting by 2's, she's been introduced to counting by 5's and 10's but we still have yet to "test" on that. We've been working on odds and evens and lots of other things. Science is Annie's favorite subject! If she gets a choice that's what she will pick to work on. We've done lots of reading on science and watched videos and even did an experiment about properties of matter, we're hoping to get in LOTS more experiments as the year goes on. </div>
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We've never really used a full curriculum for Annie, we've just looked at the State standards for general education and tried to find materials that we were able to adapt that would help us teach these things. I always felt as if Annie was understanding things but there were so many "holes" in what we were teaching. There's a difference in knowing that 2+2=4 and understanding what 2+2=4 means. We have recently found an amazing app and website that have a complete curriculum for grades K-3 and it is all adaptable AND it is in a format that Annie learns best - short educational videos from <a href="http://www.brainpopjr.com/">Brain Pop Jr</a>.! We LOVE this and so does Annie! In addition to the videos their website offers lesson plans, experiments, crafts, worksheets and quizzes! We are LOVING this and can't say enough good things about it. </div>
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So, home schooling ROCKS but there is no way I could do all of this on my own and stay sane. Our wonderful Lauren is continuing to come and help out with Annie 2 days a week. She typically takes Annie to therapy but we have once again been denied (insurance issues!) so Lauren is helping us out more and more with stretches and physical therapy at home as well as lots of schooling. Lauren is amazing, she works with Annie with such patience, she understands her so well and believes in her abilities! Annie LOVES Lauren, her face lights up when she sees her and is always leaning in for snuggles. Their bond is beautiful. In addition to being great with Annie Lauren allows me some free time to work in James and Gracie's classrooms, get housework done, get my RettGirl work done, grocery shop and if you can believe it I have actually gone out several times to meet friends for coffee - GASP! I know! It's been a LONG time since I have socialized, it's great! </div>
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One last bonus to home schooling is that we get in a TON of PT during the day. Annie is doing awesome after her therapy back in July! She is walking and standing so much more! We do some of her school work in her stander. We've been doing lots of tummy time and we have been using our vibration platform - it has really increased Annie's balance and muscle tone. </div>
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Of course not every day is spent being so productive. We have lots of days where Annie may be able to do therapy but can't concentrate enough to do school, days where she can concentrate on school but is too weak to do therapy and days where she is exhausted and her body just needs to rest on the couch but one thing is certain, she is doing leaps and bounds better than she was a year and a half ago and I thank God everyday that I am able to stay home with her and home school her. I'm learning so much about my little Annie and everyday it becomes more and more clear that she is my very intelligent, ambitious little girl that remains trapped in a body that has failed her. We will continue to fight daily to educate her and keep her strong and healthy until God's perfect time when He reveals a cure. </div>
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A friend posted this video about a man who had a stroke and was unable to talk. When his family decided to try a drug he regained the ability to speak for an hour out of his day. In this video he talks about what it's liked to be trapped, unable to communicate. This is exactly what my sweet Annie is going through - daily torture, being at the mercy of others for every basic need, unable to have a choice or an opinion and having others believe that you are brain damaged and unable to understand anything. My heart breaks for my sweet Annie, I wish I could take her place. </div>
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<a href="http://www.godvine.com/Man-Suffers-an-Unimaginable-Tragedy-but-True-Love-Saved-Him-2356.html#.UJvCK2n2UJM.facebook">http://www.godvine.com/Man-Suffers-an-Unimaginable-Tragedy-but-True-Love-Saved-Him-2356.html#.UJvCK2n2UJM.facebook</a></div>
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The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-74220681823419871822012-09-06T11:00:00.003-07:002012-09-06T12:46:42.677-07:00Why?At 1am on Wed. Sept. 5 sweet <a href="http://www.rsrt.org/anna/">Anna Gutierrez</a> passed from this life into the arms of her heavenly Father and stepped into her eternal home due to complications from Rett Syndrome.<br />
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In this Rett Syndrome journey hospitals and complications and death become commonplace. We hear of an angel passing and earning her wings almost weekly. A rare disorder, Rett Syndrome binds so many families from all over the world into one giant, loving, understanding extended family. We need to lean on each other for support. Many times questions left unanswered by doctors and specialists are answered between parents and caregivers. Its a family you never hope to join but once you're forced in your embraced, supported, cared for and loved. When one of our girls leaves this earth we all grieve. We grieve for the parents because we can see ourselves in them, we grieve for all the children suffering from Rett Syndrome because we see our own daughters suffering. One child is no more important than the next, however, my grief for Anna hit deeper than I've ever felt before. <br />
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Maybe it was because we had the pleasure of meeting beautiful Anna and her wonderful family when we visited Montefiore hospital a few years ago. We met in the hallway of the clinic, each with our Anna's and exchanged phone numbers. The next day we spent the entire day with the Gutierrez family as we talked and chatted and watched our girls in their similarities and differences. I remember little Anna trying to grab at my Annie's shoes as if to try to take them off, I remember thinking "what awesome hand function!" - a typical Rett mom response. Maybe it was the connection that we made with Manny and Stefanie, Anna's parents. The type of people who open their home, drive you to the airport so you don't have to pay for a taxi and feel like instant friends, like you've know each other for years. Maybe it was because we remained friends, chatted back and forth about GI issues, struggles and prayed for our girls and our families. Maybe it was because they did everything right - accepting only the best care for Anna, clinging to their faith, marriage and family and tirelessly raising awareness and funds for Rett Syndrome. Maybe it was because Anna struggled so much in her battle. Or maybe because she was only 4 years old. Or maybe it's because I wonder why their Anna was chosen to come home and not mine. <br />
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Gods ways are not our own. There is so much suffering in this world and dealing with Rett Syndrome you move to the forefront of that suffering and helplessly watch it attack. In a world filled with greif it's easy to see why people question God. "If he's loving why does he allow all of this". I don't know the answer but I do know that He promised that life would be hard, that we would have trouble, but to take heart, He has over come the world (John 16:33). And that ALL things work together for GOOD for those who love and serve the Lord (Romans 8:28). I hang on to these promises and they help to ease the sting of this life and this disease. <br />
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Little Anna is free. There is no Rett Syndrome in heaven. I imagine her with all of her sisters dancing on strong legs without braces and singing with the most beautiful voice imaginable. She is home, she is filled with joy and there is no pain left in her body. The ache comes from the family she left behind. I can't even begin to imagine the pain, the vast empty hole that is left in their hearts that will never truly heal until the day they meet again. I can only imagine how empty their arms feel, no parent should ever have to bury their child, but 4 years of hugs and kisses is scarcely enough time for all the love they have to share. <br />
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Anna's passing has made me put my own life in check. Living with Rett Syndrome you certainly don't take much for granted, however, we can all get comfortable. Too comfortable. And you forget to praise God for 3 children that woke up this morning for the simple fact that they are all breathing. After 5 months you forget to say "thank you" for another day without a seizure, it's just become the normal. You forget that the cold your daughter had didn't just "run it's course" but it was God who healed her and spared her from the pneumonia she is so susceptible to. And the surgery that she recovered from so quickly, well she had a great surgeon but it was God who steadied his hand. Every ounce of every day should be spent in Thankfulness because even through the rough days we are covered by His grace. And every chance we get we need to show others how much we love them, especially our children. We never know when any of them will be called home but when our girls get diagnosed with Rett Syndrome they automatically move closer to heavens gates. We need to take the time to hug our kids, not just before bed but whenever they're within arms reach. We need to kiss them and tell them what a treasured blessing they are. To read them that extra story and lay down with them in their beds at night to just get a little more time in. We should skip the dinner dishes and snuggle on the couch without worrying about bedtimes and schedules. We need to drink our kids in and study every single inch, committing to memory their everything. I will not allow myself to get comfortable again, lest another angel be taken from this earth too soon to show us once again how precious this life is. <br />
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God Bless the Gutierrez family who's lives are forever changed. I pray that our Lord wraps you up in His healing arms and gives you the peace and comfort that surpasses all understanding. We love you all and will never forget sweet Anna. She has shown the world so much and we will continue to fight the Rett monster in honor of her. <br />
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<iframe allowfullscreen="allowfullscreen" frameborder="0" height="375" mozallowfullscreen="mozallowfullscreen" src="http://player.vimeo.com/video/30255781" webkitallowfullscreen="webkitallowfullscreen" width="500"></iframe> <a href="http://vimeo.com/30255781">Held - Natalie Grant</a> from <a href="http://vimeo.com/comunidadixoye">Comunidad Cristiana</a> on <a href="http://vimeo.com/">Vimeo</a>.<br />
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To learn more about Anna's story and a clip of her and her family on "the View" click <a href="http://www.rsrt.org/anna/">HERE</a>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-53942786742099517082012-07-27T07:26:00.000-07:002012-07-27T07:33:05.507-07:00Surgery updateAnnie has gone down hill lately with her physical abilities. She was once able to walk all the way down the street and back (with assistance) and has recently come to point where she is only able to walk a few painful feet and then her leg gives out. She was once able to stand in her stander or with assistance for several hours a day but recently she is only able to stand for 10 minutes until her leg buckles. Annie has always been the one who has initiated walking and standing, it's something that she wants to do so much and would complain if she sits for too long but that has slowly changed to not wanting to be on her feet and complaining when we do make her stand. She has been noticeably in pain when standing and when asked she always says that the pain is in her right knee. <br />
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Of course we are followed by an Orthopedic surgeon so we were anxious to get in to see him in early July and see what the X-rays showed about what might be going on with Annie. We worried that her hip subluxation had gotten worse and that was causing all the problems. Unfortunately we were right. Our Ortho told us that Annie's left adducter tendons were too tight (we already knew this but didn't realize to what extent) and were causing her hip to be pulled out of socket, her left hip was now 35% subluxated and getting worse, he suggested an out patient surgery where he would cut the tendon in her left adducter as the only solution to save her hip. Of course we were on board with the surgery and he squeezed us in as soon as he could.<br />
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So, we were given a date for surgery and started to prepare which includes updating Annie's home medical chart, researching the procedure and faxing information to the anesthesiologist so they are aware of Annie's conditions and take the necessary precautions in putting her under. All was set and then, they changed the date on us. Which would have been fine but Scott was heading out on a business trip that was already booked and he couldn't get out of it. Ugg, there goes our rock, Annie and I would have to do this on our own. Well, not exactly on our own, we had wonderful Grammy to come with us and our amazing Miss Lauren to watch James and Grace and my wonderful sister to stay with us overnight to make sure everything was OK after surgery. We are so blessed to have so much love and support! <br />
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<tr><td class="tr-caption" style="text-align: center;">pre op smiles!<br />
<span class="Apple-style-span" style="font-size: small;">So surgery day comes and we are called to come in early, we did and everything worked quickly and efficiently. We got right in and were introduced to everyone that would be working with Annie, we explained everything over and over again and stressed the importance of using very little anesthesia and that Annie needed to be watched very closely because her condition puts her at high risk for severe complications. I felt like I annoyed everyone to the point that they were rolling their eyes and writing "crazy, over protective mother" in her chart. Annie breezed through surgery so easily, the anesthesiologist listened to my concerns and gave her very little medication for the quick procedure and kept her for observation until we felt comfortable and asked to leave.</span></td></tr>
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It's strange how things work out. I started feeling guilty about the hard time that I gave everyone and came home to find on facebook that a little girl with Rett Syndrome who had a similar surgery to Annie's on the same day was now in the PICU with complications 2 days later. It was then that I realized why I had been so persistent and why I had pushed so hard for Annie to be treated gently. It's because girls with Rett Syndrome are so very fragile. This little sweet girl was taken care of by world renowned Rett experts and a phenomenal Rett clinic and she still had complications, not because of her care, because of Rett.<br />
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I couldnt help but think, why was my Annie OK? Why did my Annie have such an easy time with this procedure when her Rett sister was battling so hard with hers. There is no answer except Gods grace. His grace carried Annie safely through an uneventful surgery and grace will carry this other sweet Rett girl through the complications and make her stronger for it. <br />
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<tr><td class="tr-caption" style="text-align: center;">Slumber Party! After surgery Annie was ready to party!</td></tr>
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I look at these 3 beautiful children and see Gods grace everywhere. I am so blessed and so thankful! <a href="http://1.bp.blogspot.com/-0c0QTFJf4d8/UBIf3LFW6ZI/AAAAAAAABjw/mIbTNAKj4zI/s1600/kids+on+the+swings.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://1.bp.blogspot.com/-0c0QTFJf4d8/UBIf3LFW6ZI/AAAAAAAABjw/mIbTNAKj4zI/s320/kids+on+the+swings.jpg" width="320" /></a><br />
It's now 3 days after surgery and Annie is doing great! She had a TON of bruising but didn't have much pain at all, she is sore at the end of the day but it's well controlled with just a dose of motrin. She has been on her feet walking, standing and even rode her bike for a short time. We can see a change already in the way she sits and stands, she's so much straighter now that her left leg isn't so tightly pulled in she is able to weight bear symmetrically. In time we hope to get her stronger and back to where she was at this time last year. <br />
<br />The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-22686564585045079982012-07-10T20:36:00.000-07:002012-07-10T20:36:06.181-07:00This Sweet Smile is Back<br />
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Annie's sweet smile has come back. It happened about a week ago, I'm not even sure the day but I realized that there was much less screaming, I saw that sweet smile that lasted not just minutes but hours. I saw that this happened day after day and realized, "oh my gosh, my Annie is BACK!". It's very strange to understand but our kids can come and go and there really isn't a reason that you can pin point for it but the people closest to them can tell. We are blessed to have an amazing support. I didn't even have to say a thing and our wonderful Lauren said "it's so great to have our Annie again, she did awesome today". Miss Bev who helps Annie at Bible school took one look at her when she rolled in last week and said "hi Annie!" then looked at me and said "We've got her back don't we? I can tell by her smile"!. I'm not sure what makes my heart shine more the fact that Annie is smiling again or that we have so many wonderful people by our side that clearly know our Annie so well. <br />
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Of course things have changed, it's SUMMER! Soooo, maybe her smile is back because our schedule is gone and everything is just go with the flow FUN! One thing people assume with Annie is that she needs to be kept on schedule. Annie has NEVER had a schedule and trust me, this type A personality mom has tried over and over again to put this girl on a schedule (just ask her Baby Wise Big Brother). Annie has always kept her OWN schedule. <br />
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<a href="http://3.bp.blogspot.com/-zKtbJdWOda4/T_zxCEDE2TI/AAAAAAAABg0/TNt7F58frmI/s1600/IMG_2374.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="http://3.bp.blogspot.com/-zKtbJdWOda4/T_zxCEDE2TI/AAAAAAAABg0/TNt7F58frmI/s320/IMG_2374.JPG" width="320" /></a>It may be because she's spending tons of time with her brother, sister, cousins, and friends! Summer is great for hanging out with everyone!!!<br />
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<a href="http://1.bp.blogspot.com/-JPOWMsaA4FQ/T_zyd2u1bYI/AAAAAAAABiA/9Rfq-naHCjQ/s1600/IMG_2384.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-JPOWMsaA4FQ/T_zyd2u1bYI/AAAAAAAABiA/9Rfq-naHCjQ/s320/IMG_2384.JPG" width="320" /></a></div>
Maybe it's because she has a brand new cousin!<br />
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Or because the weather is nice and warm!'<br />
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Maybe it's because Annie just LOVES loud noises and bright lights! Another thing that people assume is that Annie can't handle loud noises and chaos and that couldn't be further from the truth. This girl thrives on loud noises and just LOVES fireworks. The noise makes her giggle and the lights keep her attention. We just happen to have an annual 4th of July party every year.<br />
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Or maybe it's the awesome pool that her favorite Aunt and Uncle heat to the perfect temperature just for her.<br />
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I don't know what the reason is but really, it doesn't matter, all that matters is Annie's back and we are just going to love and enjoy and remember this wonderful, happy, content, loving time we have with her.<br />
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<a href="http://4.bp.blogspot.com/-bv9tV5nY360/T_zxMwYapfI/AAAAAAAABhQ/hdhN4Xb_yOA/s1600/IMG_2388.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-bv9tV5nY360/T_zxMwYapfI/AAAAAAAABhQ/hdhN4Xb_yOA/s320/IMG_2388.jpg" width="240" /></a></div>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com3tag:blogger.com,1999:blog-8675369465334468208.post-60460554529401813592012-06-03T19:06:00.001-07:002012-06-03T19:39:33.357-07:00All Of Me<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Matt Hammitt is the lead singer for Sanctus Real. He and his wife had their 3rd child in September of 2010. A little boy named Bowen who</span><span class="Apple-style-span" style="line-height: 18px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> was born with a serious and rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), in which the left side of the heart is severely underdeveloped. You can read all about their journey at </span><a href="http://bowensheart.com/"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">their blog HERE</span></a><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">. In Sept. 2011 Matt released this song, a story about his son Bowen. I heard this song on the radio the other day and listened closely to the lyrics, I started to cry as his words to his son matched my own feelings for my sweet Annie perfectly. These words could have been taken straight from my heart, I love this little girl....</span></span><br />
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Afraid to love, something that could break<br />
Could I move on if you were torn away?<br />
And I'm so close to what I can't control<br />
I can't give you half my heart and pray He makes you whole<br />
<br />
You're gonna have all of me<br />
You're gonna have all of me<br />
'Cause you're worth every falling tear<br />
You're worth facing any fear<br />
<br />
You're gonna know all my love<br />
Even if it's not enough<br />
Enough to mend our broken hearts<br />
But giving you all of me is where I'll start<br />
<br />
I won't let sadness steal you from my arms<br />
I won't let pain keep you from my heart<br />
I'll trade the fear of all that I could lose<br />
For every moment I'll share with you<br />
<br />
You're gonna have all of me<br />
You're gonna have all of me<br />
'Cause you're worth every falling tear<br />
You're worth facing any fear<br />
<br />
You're gonna know all my love<br />
Even if it's not enough<br />
Enough to mend our broken hearts<br />
But giving you all of me is where I'll start<br />
<br />
Heaven brought you to this moment, it's too wonderful to speak<br />
You're worth all of me, you're worth all of me<br />
So let me recklessly love you even if I bleed<br />
You're worth all of me, you're worth all of me<br />
<br />
You're gonna have all of me<br />
You're gonna have all of me<br />
'Cause you're worth every falling tear<br />
You're worth facing any fear<br />
<br />
You're gonna know all my love<br />
Even if it's not enough<br />
Enough to mend our broken hearts<br />
But giving you all of me is where I'll start<br />
<br />
You're gonna have all of me<br />
'Cause you're worth every falling tear<br />
You're worth facing any fear<br />
<br />
You're gonna know all my love<br />
Even if it's not enough<br />
Enough to mend our broken hearts<br />
But giving you all of me is where I'll start<br />
Is where I'll start<br />
<br />
Pause the music at the bottom of the blog roll and click the play button to hear the song.</div>
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</span>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-58773633795457820782012-05-20T12:47:00.001-07:002012-05-20T12:47:03.322-07:00Success!The Barnes and Nobel Fundraiser was a HUGE success and a TON of fun! What a fantastic night with a bunch of great kids!<br />
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Annie's friend Rachel (beautiful Rett girl) came out for the evening and the pair were like little celebrities!<br />
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Barnes and Nobel was packed it seemed that everyone in the bookstore knew Annie. Every person we passed by said Hi to her and wanted to stop to talk, introduce themselves and get a picture with our little angel. The kids were so excited to tell us about what they had learned about Rett Syndrome and as one boy put it "We just really need to cure this". Yep, couldn't have said it better myself! <br />
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<tr><td class="tr-caption" style="text-align: center;">The Girl Power Flower was EVERYWHERE! Even on this cow!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And Yes, a Girl Power cake too! </td></tr>
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I honestly can't thank Mr. Dalton and all of his 8th graders for going above and beyond for Annie and for Rett Syndrome. Annie was so excited at the event she was completely worn out when we left:<br />
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If you missed the event but still want to help there are a few days left to buy books online and have the proceeds benefit Girl Power 2 Cure - just type in the Book Fair code below.<br />
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I'll be sure to update with a total raised from this amazing event! <br />
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A special "Thank You"! To the kids who made video's of Annie's fight with Rett Syndrome, and for those who wrote letters, and gave special gifts of Annie's favorite things. She enjoying all of her goodies!! <br />
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<a href="http://3.bp.blogspot.com/-ymbAgzU1s6g/T7lI1l38-iI/AAAAAAAABes/BTB1XMZUzGM/s1600/Letter+and+pic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-ymbAgzU1s6g/T7lI1l38-iI/AAAAAAAABes/BTB1XMZUzGM/s320/Letter+and+pic.jpg" width="239" /></a></div>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-61361304531370932362012-05-17T06:48:00.002-07:002012-05-17T06:48:42.568-07:00Fox 2 News and Barnes and Nobel FundraiserBrian Dalton is an 8th grade teacher at West Middle School. He has an amazing group of kids that are putting together a fundraiser at Barnes and Nobel this Friday. All proceeds from purchases on Friday night will go to Girl Power 2 Cure for Rett Syndrome Research! This is the second year that Mr. Dalton's 8th graders have been working to fund a cure for Rett Syndrome and we couldn't be more blessed. This year Mr. Dalton got Fox 2 News to come out and do a story about Rett Syndrome and the fundraiser the video is below. <br />
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<a href="http://www.myfoxdetroit.com/dpp/health/eight-graders-raising-money-for-rett-syndrome-research-20120516-ms">Eight Graders Raising Money for Rett Syndrome Research: MyFoxDETROIT.com</a></div>
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If you are in the area please stop by Barnes and Nobel on Friday from 6pm to close all proceeds of the sales that night will go to Rett Research. If you're not in the area you can still help by going online and buying off of the Barnes and Nobel website using the code below. <br />
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<img src="webkit-fake-url://FD8AED5D-8DEB-4105-848A-301536836048/application.pdf" /><br />
A HUGE thank you to Mr. Dalton and all the 8th graders involved!The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com1tag:blogger.com,1999:blog-8675369465334468208.post-59441791651186725232012-04-23T10:23:00.001-07:002012-04-23T10:38:47.748-07:00Annie update<div class="separator" style="clear: both; text-align: center;">
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Well, its been awhile so I thought I'd give an update. Unfortunatly it's not a great one. Annie has been having a very difficult time lately. She was back in the hospital on Good Friday with more seizures. This time they lasted from 1pm to 11:30pm. Stopping them was an issue since Annie is no longer able to have Ativan (what they typically give in the hospital to stop seizures) since last time her blood pressure dropped to scary numbers. Thankfully we had our wonderful Rett Specialist, Dr. Sasha, via phone and she was able to tell the residents how to proceed with our sweet Annie. We only spent 1 night in the PICU and were able to be home late Saturday night just in time to get ready for our Sunday Easter Brunch<br />
.<a href="http://4.bp.blogspot.com/-hUaVz5-vxNw/T5WNOwxegJI/AAAAAAAABbM/53OzgkzzPfs/s1600/kids+Easter+2012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://4.bp.blogspot.com/-hUaVz5-vxNw/T5WNOwxegJI/AAAAAAAABbM/53OzgkzzPfs/s320/kids+Easter+2012.jpg" style="cursor: move;" width="320" /></a><br />
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With seizures continuing we have increased Annie's meds. It looks as though Annie is following a trend of having seizures every 3 months and once she has 1 her body is unable to stop having them. Our plan now is to wait until there is another one (likely in July) and stop them immediatly with our rescue med. I feel a little more at ease now that there's a plan.<br />
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Since this last hospital stay and really since about January Annie has just not really been herself. She is much weaker these days, some days not able to stand at all and other days her legs give out after just a few minutes of being upright. Screaming fits are at an all time high (OK, not regression high but high!). We aren't sure of the reason for this but Annie is screaming for multiple hours a day every day now. Her hips also seem to be giving her trouble, when she is standing she tends to guard her right leg (which has the hip that's subluxated 30%). She has also taken a couple tumbles in the past few days, both on my watch (Great job Super mom). Breath holding spells are also getting out of hand and her circulation is especially poor and is causing her pain. Lately we have also noticed what we can only describe as "crazy eyes" - she will wake from a nap or in the middle of the night, her eyes will open super wide and will dart around the room in a circle over and over and over again, sometimes her eyes will be in sequence and other times her right eye will look right and her left eye will look left - see, crazy eyes. We aren't sure what this is, likely just a "rett episode" which rett parents will understand but possibly seizures in her sleep. <br />
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<tr><td class="tr-caption" style="text-align: center;">spent</td></tr>
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Sleeping has been greatly increased as well which is a side effect of the medication. This is both good and bad - the good is that Annie is sleeping through the night most nights and we have completely cut out benedryl (YAY!) and are decreasing her melatonin, which we were previously using to get her to sleep. The bad is that she is sleepy all through out the day and when Annie gets sleepy she can only nap when circumstances are perfect which means we are at home, she is on the couch, no one can make a sound and depending on her mood that day she either needs to be left completly alone or she needs Scott or I to hold her and snuggle until she falls asleep, you also can't wait too long to put her down because then she's over tired but you can't put her down too soon because then she will just get restless and start to move around and won't be able to settle. Guess how often we can make circumstances perfect for Annie - Yep, hardly ever - guess what Annie does when she's tired but can't sleep - scream! This is likely the reason for the crazy hours of screaming she is doing now. Annie's weight and appetite have also increased, another side effect of the medication, which is also good and bad. Good because Annie needed to gain some weight and an increased appetite means increased nourishment. Bad because it is getting harder and harder for me to lift her, get her in and out of the car and up and down the stairs. She is stll very tiny - only about 36 pounds but she is long and fluctuates between being stiff as a board and limp as a wet noodle - both are very hard to carry.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-NR65V7Hx6M4/T5WNHHs6ipI/AAAAAAAABa8/ARh2PG3PLgE/s1600/Annie+spring.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-NR65V7Hx6M4/T5WNHHs6ipI/AAAAAAAABa8/ARh2PG3PLgE/s320/Annie+spring.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at those cheeks</td></tr>
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<a href="http://3.bp.blogspot.com/-CnLcz-LgCsA/T5WM5vfZVoI/AAAAAAAABak/rDUb-HQmGCc/s1600/Annie+asleep.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-CnLcz-LgCsA/T5WM5vfZVoI/AAAAAAAABak/rDUb-HQmGCc/s320/Annie+asleep.jpg" style="cursor: move;" width="239" /></a><br />
Most of our days now revolve around making Annie comfortable, trying to figure out why she is screaming, feeding her and meeting her basic needs. There's not much time left over for therapy, school work or spending as much time with James and Grace which just breaks my heart. <br />
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We are blessed that we have people around us that are always there to help, our wonderful Miss Lauren has been amazing, she loves Annie and takes great care of her, it's so refreshing to get a break twice a week to spend time with Grace or work in James's classroom and not feel anxious about Annie because she is in such great hands. Of course my mom is always there helping out when she can and Miss Bev gives us a beak on Sunday mornings by taking Annie to bible school. I don't know what we would do without this amazing support. <br />
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Through it all we have not lost hope. When Annie has a particularly rough day I hold her and tell her again and again about <a href="http://www.rsrt.org/about-rsrt/press-releases/bone-marrow-transplant-arrests-symptoms-in-model-of-rett-syndrome/">the amazing research that has just come out</a>. We have faith that this too shall pass and that brighter days are around the corner. We know our cure is coming but it can't come fast enough for Annie's sake and for all of us. The kids want their sister back, they want to play with her, Annie is just desperate to have some form of independence and Scott and I can't bear to watch our sweet daughter continue to suffer. We are praying for a cure every chance we can and will be seeing some of our specialists over the next few weeks to see if there is anything else going on - ortho for her hips, neuro for possible VMR and GI because GI is always a concern. Please pray that we get through this season quickly and that Annie bounces back to her strong, happy self. Hopefully our next update will be about all the accomplishments our sweet girl has made! <br />
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"For I WILL restore health to you and heal you of your wounds, said the Lord".The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com3tag:blogger.com,1999:blog-8675369465334468208.post-7026408930152862282012-03-14T07:21:00.002-07:002012-03-14T07:25:53.374-07:00I Wish.......I Wish I could be dealing with a bratty 7 year old tantrum instead of dealing with screaming fits that last hours with unknown cause.<br />
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I wish I could be burdened by my daughters occasional restless nights sleep instead of administering 2 sleep meds every night and being pleasantly surprised at a full nights sleep.<br />
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I wish I could be talking to my daughter about a mean girl or the boy in her class that's teasing her rather than desperately trying to get her to tell me her basic needs through a computer.<br />
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I wish our trips to the ER were because my daughter was being a bit too fancy on the monkey bars and took a tumble rather than because of seizures.<br />
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I wish I could be meeting with my daughters teacher because her math skills need improvement rather than needing to home school her because the school system is unequipped to educate a child like mine.<br />
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I wish I could scold my daughter for saying a nasty word or for hitting her brother or sister rather than dreaming of the day when an actual word comes from her lips or a purposeful movement comes from her hands.<br />
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I wish I could hear my daughter complain about how much she hates what I made for dinner rather than having her obediently open her mouth while I spoon feed her. <br />
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I wish our nighttime routine involved a shower, reading time and then lights out (even if I find her later reading under the covers with a flashlight), rather than me having to bath my 7 year old, dress her, brush her teeth, read to her, administer meds and hook her up to her tube feeding.<br />
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I wish I could punish my child for crossing the street without looking both ways or running over to her friends house without letting me know instead of having to put my daughter in a wheelchair and pushing her across the street hoping we will find someone at the neighborhood park that would stop and say "hi" to her.<br />
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I wish I could be searching the Internet for a new recipe to make for dinner rather than searching for the latest research in Rett Syndrome.<br />
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I wish my oldest daughter could do her little sisters hair or pick out her clothes rather than the other way around.<br />
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I wish I could polish my daughters fingernails rather than searching her fingers and hands for callouses and skin breakdown because of all the hand wringing.<br />
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I wish we could be saving for a family trip or a new big flat screen TV rather than saving for the next needed medical device or an intensive therapy program.<br />
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I wish my husband could come home early from work because it's a beautiful day and we want to spend the evening as a family rather than coming home because it's only noon and I'm already in tears from a difficult day and he has to take over.<br />
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I wish a respiratory infection would bring the annoyance of a couple sleepless nights, steam showers, a pediatricians visit and a possible antibiotic rather than all of the above plus breathing treatments, dehydration, weight loss, labored breathing and possible hospital visit. <br />
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I wish there was a cure for Rett Syndrome.<br />
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I will continue to pray that all of these wishes come true but if they don't then I pray for increased strength for the difficult days, increased energy for the sleepless nights, increased resources to meet all of my daughters needs, increased peace to make it through the sicknesses and screaming fits and increased tolerance for the typical friends that complain about things I can only wish for.The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com3tag:blogger.com,1999:blog-8675369465334468208.post-38689660306985510152012-03-08T18:57:00.000-08:002012-03-08T18:57:44.895-08:00More Special Than SpecialFor the past 6 months I have been trying to take Annie to a Special Needs Social Night. It's held the first Friday of every month and it just so happens that those Friday's we have either had something going on or she hasn't been feeling well enough to go. Last Friday I was thrilled to finally get her out and socializing. She's had such a rough time lately and has missed lots of bible school, I just felt like Annie was dying to get out and have some fun. <br />
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Annie's helper was over that day and we started trying to figure out what would be the best form of communication for Annie while she was there - her computer, program her sequencer, use eye gaze, etc. We started reading the flyer because it listed the things that they would be doing that night. I was caught off guard as I read - "puzzles, games, dance party, pizza" and realized Annie can't do any of these things. This was supposed to be a special needs social night and even at a special needs function Annie wasn't able to participate independently in anything. For flippin' sake she wouldn't even be able to eat the pizza - 1 she can't eat independently and B she's gluten free!<br />
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Unfortunately the day was pretty bad and as we rolled into the evening it was clear Annie wasn't going anywhere. I guess, in a way, it was a relief, I didn't have to worry about all that we couldn't do at the social night because we weren't even able to go. What a let down. <br />
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The thing with special needs is that it covers a HUGE stretch of kids. Ones that are incredibly high functioning that may have a little social or texture issue to those like my Annie - unable to do a single thing on their own. This reality was all too clear when we were in therapy, Annie would be sitting in her wheelchair crying and I'd be holding up Yes/No cards in an attempt to figure out what was wrong while another mom was walking in with their kiddo skipping and singing and carrying their favorite toy - And of course that was the same kid who's insurance approved unlimited therapy sessions...... but that's another story.<br />
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Even within Rett Syndrome there is a huge spectrum, there are kids that speak a few words, kids who have retained hand function, and kids who can walk, even run. Medical issues vary too, some kids are able to take all their nourishment in by mouth, others who have never had a seizure, and others who have no issues with their bones. Don't get me wrong, even the highest function Rett girl leads an incredibly difficult life and regardless of the issues these girls face or don't face this is NEVER an easy road but it's a pretty scary place when your kiddo has (arguably) the most severe and disabling condition and within that condition she is one of the most severe and disabled. OUCH! <br />
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It seems there isn't really a place where we fit in. On top of the medical and physical issues we are dealing with a kid who is very much aware of everything. She is a typical little girl in a broken body which means she understands that she is the most severe of the severe and she is very much aware of all that her peers can do, all she can't do and how there really isn't a place exactly for her. <br />
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Next month we will once again try for the special needs social night. God willing we will make it. I pray that we will be OK with just the socializing part and not the activities and that maybe we will meet another kiddo and parent that are more special than special just like us.The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com1tag:blogger.com,1999:blog-8675369465334468208.post-85266358446250482242012-02-26T16:48:00.001-08:002012-02-26T16:53:01.489-08:00Thank you Rett Syndrome<div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; color: #0000ee; margin-left: 1em; margin-right: 1em;"></span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; color: #0000ee; margin-left: 1em; margin-right: 1em;"></span></div><div style="color: black; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;">Yes, you read that title correctly. As much as I want and wish and pray to not have Rett Syndrome in our lives I can't do anything to take it away. Today I realized that and was actually able to open my eyes up to the reasons why I am thankful for Rett Syndrome.</div><div style="color: black; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><br />
</div><div style="color: black; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;">Scott and I were able to get out for a much needed date night last night. We don't do date night weekly or even monthly or even every other month like many married couples. For various reasons our lives just don't allow for that. But yesterday we got out, and not a second of the 4 hours we spent together was taken for granted. Thank you Rett Syndrome for teaching us how important our time together is.</div><div style="color: black; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><br />
</div><div style="color: black; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;">At 6 am this morning a friend, whom I have only known for a little over a year now, was running in the Disney Princess Half Marathon in honor of Annie. This friend had the idea to run and "pitched" it to Girl Power 2 Cure. Team Girl Power 2 Cure was over 20 runners strong and raised almost $60,000! Inspiration is contagious. Thank you Rett Syndrome for inspiring others. </div><div style="color: black; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><a href="http://3.bp.blogspot.com/-wGvFeWFlGkM/T0rR0c0NBEI/AAAAAAAABYI/AIBIw37bJ34/s1600/417478_3516563595474_1313511093_3503523_1283958770_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="237" src="http://3.bp.blogspot.com/-wGvFeWFlGkM/T0rR0c0NBEI/AAAAAAAABYI/AIBIw37bJ34/s320/417478_3516563595474_1313511093_3503523_1283958770_n.jpg" style="cursor: move;" width="320" /></a></div><div style="text-align: left;"><span class="Apple-style-span" style="color: black;">This morning I got up to find Gracie piling pillow pals and stuffed animals around her sister. Annie had been crying and she was trying to comfort her. Compassion can't be taught, it is only lived. Thank you Rett Syndrome for forcing us to live compassionately.</span></div><a href="http://4.bp.blogspot.com/-bu1CxlbhDdo/T0rR4ghBGhI/AAAAAAAABYQ/KOBLV0UKvXM/s1600/Annie+with+animals.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-bu1CxlbhDdo/T0rR4ghBGhI/AAAAAAAABYQ/KOBLV0UKvXM/s320/Annie+with+animals.jpg" width="238" /></a><br />
Annie was finally well enough to go to church today. As we were wheeling her towards her class a little girl walked out, looked at Annie and said "Annie!!!!" and gave her a big bear hug. I don't even know the little girls name. Thank you Rett Syndrome for spreading that compassion beyond our family and on to everyone that Annie meets. <br />
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Make a Wish has graciously given Annie the opportunity have a wish granted. 2 volunteers came over today for a Wish granting ceremony. Annie chose Disney World! In the 8 years since we have been parents we have never been able to go on a family trip together. Thank you Rett Syndrome for making a family wish come true. <br />
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Of course in a heart beat I would chose to take Rett Syndrome and throw it far, far away, out of our lives forever. Of course I hate to watch my child suffer day in and day out for the 6 years that this disease has taken over her life and ours. Tomorrow we will once again pick up our swards and fight against Rett Syndrome but while we're waiting for our victory we will choose to see the blessings our situation brings.The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com2tag:blogger.com,1999:blog-8675369465334468208.post-60603600800898347872012-02-13T09:16:00.000-08:002012-02-13T09:25:38.934-08:00Rett Syndrome Comes Back for More<span class="Apple-style-span" style="color: #343434; font-family: Georgia; line-height: 25px;">A couple weeks ago Rett Syndrome decided that it didn't have enough power over our little Annie and came back for more in the form of seizures. Our day was eerily similar to what happened in </span><span class="Apple-style-span" style="color: #343434; font-family: Georgia; line-height: 25px;"><span style="color: #03152f; text-decoration: none;"><a href="http://www.blogger.com/goog_1325329389">October</a></span></span><span class="Apple-style-span" style="color: #343434; font-family: Georgia; line-height: 25px;"><a href="http://www.annamarymacdonald.blogspot.com/2011/10/its-been-week.html"> </a>- Annie had an incredibly lethargic day that lagged on into the evening. I got very worried about her behavior, going back and forth wondering weather to call 911, take her right into the ER or wait it out and see if I was overreacting. And then of course during my hesitation she started seizing which I was semi prepared for, what I wasn't so prepared for though was the blue lips - that has only happened to her when she has choked (which happens all too often) or when her autonomic apraxia stops her wind pipe from opening and she is not able to take a breath. The first thing that came to my mind was "She needs oxygen and we don't have any!!" So of course we called 911 - thankfully Annie's color returned and we asked them not to dispatch trying to lessen the trauma to James and Grace.</span><br />
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</div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Georgia;">When we got to the ER we were given a "room" where Annie seized again, and again. Ativan was given and we were blessed to have the same ER doctor we had in October so we didn't need to reexplain our situation. Of course meningitis wasn't even a thought this time but labs were still drawn since Annie seemed to be sick again this time (throwing up and lethargic even prior to the seizures). We of course were admitted but this time just to the regular peds floor not the PICU (oh how we missed the PICU!)<o:p></o:p></span></div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Georgia;">That night was very eventful, after getting into the room at about midnight it wasn't long before Annie's blood pressure became a concern and we had doctors and nurses in every few minutes to check and recheck on her. Her blood pressure was dropping into the 60's/30's which was more alarming then the seizures. They started to push IV fluids which seemed to bring it up slightly but we were kept for another night to observe the BP's and determine if anything else needed to be done. Of course we had x-rays and EEG's and EKG's and saw a large team of doctors and residents. We got put on keppra for seizure control and we slowly started to see our Annie come back to her typical self. We were discharged on Sat. night, ready to get home but reluctant to be without the piece of mind of an automatic BP cuff, monitors and the wonderful nurses that took such great care of all of us.<o:p></o:p></span></div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Georgia;">Annie is now on seizure meds for at least 2 years as long as their no more seizure activity which, unfortunately is very unlikely. Scott and I are still adjusting to this new symptom. The first thing that came to mind when I realized that this was going to be a long term thing was the fear of never seeing our Annie again. I feared that seizure meds would cause her to be extremely lethargic and almost catatonic. Of course I was fearing the worst. We are still adjusting to the meds and there have been a couple dose changes so it's still hard to tell but for the majority of the day we are seeing our Annie which is a blessing.<o:p></o:p></span></div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Georgia;">I'm so angry at Rett Syndrome. I wonder when it will ever back off but in reality I know that it never will, it will keep taking and taking until it has taken all of our sweet Annie and we will need to say goodbye. I'm not ready to do that. I feel as though I am literally in a race against time. She deserves to be saved, all of the girls with rett syndrome do. I have promised Annie that I will continue to fight with all I have until the scientists and researchers come up with something to help her.<o:p></o:p></span></div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Georgia;">I have been fighting with God about all of this. Hasn't she suffered enough? What on earth are the seizures going to prove that couldn't already be proven. We have come to terms for the most part on most days about our sweet Annie battling daily with Rett why is she, why are we, being tested again? I don't know the answers and I never will, another lesson I am forever learning. I do know that there are a couple ways that I can handle this, become cold and hard and bitter and resentful which will almost certainly carry down to my children. Or rise up, fight, pray, stay in faith, press on and do it with grace, dignity and a smile on my face.<o:p></o:p></span></div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Georgia;"> I'd like to be the person that does the latter but my heart is still very angry - angry because of the pain, the craziness it has brought to already fragile hearts, the extra stress this puts on us, angry about the people who aren't there for us, the ones who would rather look away and pretend they don't see, angry at all that has been lost. Although as time ticks on I am hoping to see the joy in this, the compassion and strength it brings our family, the blessings of my family and our friends that are constant in their love and support, and the amazing joy we will feel when God releases our cure and we can say goodbye to this season of our life realizing that it was all a perfect plan. I'm trying to get there, slowly, slowly, I'm trying to stay patient with my self and with others but it is a very trying process. <o:p></o:p></span></div><div class="MsoNormal" style="line-height: 19.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal"><span style="font-family: Times;">"The only ones who rest in God are those who have wrestled with God... There is no tighter embrace than the grip of the wrestle."</span><span style="color: #343434; font-family: Georgia;"><o:p></o:p></span></div><div class="MsoNormal" style="line-height: 14.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="color: #343434; font-family: Times;">Voskamp, One Thousand Gifts</span><span style="color: #343434; font-family: Georgia; font-size: 14pt;"><o:p></o:p></span></div><div class="MsoNormal" style="line-height: 14.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com3tag:blogger.com,1999:blog-8675369465334468208.post-38722008232598863632012-01-05T19:07:00.000-08:002012-01-05T19:07:13.976-08:00The UncertaintyThis morning I walked into Annie's room and she was already awake with a sweet smile on her face. She had slept all night long and had gotten her full feeding at night. Hooray for a beautiful morning. We got dressed, into the car and dropped the kids off at school - Annie was all smiles and happy noises - so was mom! We got home and got right to work on a new app that I had put onto the ipad - Annie loved it and was doing fantastic! After about 15 minutes she got sleepy - time for her morning nap and my morning workout! Honestly, could this day BE any more perfect? Annie wakes up as I'm getting out of the shower and we start working on her stretches - Annie is so happy that now she is laughing out loud and we are just having a fantastic time. After stretches we get on her braces and hop back in the car to pick up Gracie. This is where things take a turn. Out of nowhere Annie starts moaning and grinding her teeth. I pray that she holds on for just 10 minutes so we can grab Grace and get out of the school before the full screaming fit starts - I know it's coming. We make it, but the entire car ride back home was Annie screaming and kicking and Grace and I telling her over and over "It's OK Annie, we're almost home". Annie's fit continues at home, I try to ask her what's wrong but her gaze is turned down, she won't look at her yes/no cards, I'm left to guess. I go down the insanely long list of issues and give her every sort of comfort I can. She refuses food, refuses to drink, TV, meds, snuggles, music, nothing calms her. For my sanity as well as Gracies (and our ear drums) I take Annie upstairs into her bed where she continues to scream, kick and cry for 45 minutes. When I just can't bear to watch through the monitor any longer I go upstairs scoop her up and take her back to the couch so I can try again to comfort her. She kicks, screams, writhes in pain, bites, grinds her teeth and eventually calms down, exhausted from the fit, she passes out on the couch in her special spot. <br />
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Who could have guessed that such a beautiful morning would have such a terrible afternoon. The uncertainty of every moment is one of the hardest things to deal with. The unexplained moments of joy and laugh out loud happiness I'll take, but the unexplained moments of pain and suffering I could do without. I'm left to wonder what caused the pain, where is the pain, is this really pain? Although it looks like it maybe it's frustration or sadness? I really don't have a clue and because I don't have a clue as to what it is there's no way for me to help her through it. I've said time and time again that I will not let Annie's behavior dictate my attitude but it's much easier said than done. When she's happy I'm thrilled and when she's in pain I'm in agony. I'm not sure I'd be a very good mom if I could watch my child suffer and then just shake it off, although there has to be a happy medium here. <br />
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As Annie sleeps on the couch I take a much needed mental break and wonder what's in store for the rest of our day, what will she be like when she wakes? How will she feel at dinner and what time will she finally settle down for the night? Nothing is ever the same, nothing is ever predictable, anything can change at any moment without any notice and there is nothing that I can do about any of it. Such a hard thing to deal with. I remind myself that there is no joy without pain, I just wish there was some distance between the two and it wasn't a constant back and forth minute to minute. I press on knowing that as much as I'm hurting my baby is hurting so much more. I think of that sweet, precious smile and that infectious giggle and I know that they will return soon and will be even sweeter having gone through the pain. Annie's birthday is tomorrow, I'm praying her day is filled with so much happiness that the pain can't touch her.The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com2tag:blogger.com,1999:blog-8675369465334468208.post-65970210531031287062011-12-30T07:57:00.000-08:002011-12-30T08:06:59.519-08:00Why Me? Why Not?It's funny, we started out this journey wondering "why me?", "why us?", "why sweet Annie?" - she was so perfect, so complete - our first baby girl, a little sister, a boy and a girl just a year apart, WOW, were we blessed........ and yet, we didn't quite know it. <br />
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Almost 7 years ago when Annie was born we should have thought "why us?" - "Why did you bless us so abundantly Lord?". Nope, those words were never spoken. Yes, of course we were thrilled, of course we thanked God for our little family, but we sort of expected kids who could walk and talk. We thought for sure we would have kids who would have melt downs or who may not have the best of manners, maybe even kids with allergies or other inconveniences, but it never crossed our minds that maybe we would have kids with seizures or g-tubes or orthotics or life threatening conditions. We never thought that we would need to thank God that our child was breathing - after she turned blue and was raced to the ER over and over again. We never thought we would have to thank God that there was a medicine that could stop our daughter from hyperventilating because she was passing out so much from lack of oxygen and dehydration. Never did we think that we would have to praise God each and every morning just because He graced us with another day with our sweet daughter. When holding our little newborn angel we just thanked God that He had "delivered" - He gave us exactly what we wanted and expected - a healthy baby girl. We never questioned it, we just thanked Him. <br />
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Boy were we nieve. The sicknesses came, the development became delayed, the testing started and we became desperate. We started begging and pleading with God - please, let this be an easy fix. Please let this be a season, not a lifetime. Please God let there be medicine that can help her. We want, want, want, and expect, expect, expect. What happens when we don't get what we expect to have? When what we pray and plead for is something that is so natural and easy and expected for everyone else that its taken for granted?<br />
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We never ask "why me?" when good things happen but we are so quick to ask "why me" when bad things come into our life. Why? Are we so selfish that we think we deserve everything to be handed to us? Do we honestly think that we are so divine that bad things can't touch us? I don't know why God chooses certain people to give a "wake up" call to. I don't know why He chose me, my family, my Annie, but I do know that I have been given an amazing gift. A gift that I will always be thankful for, a gift that I will NEVER take for granted. I have a child who is unable to do 1 single thing for herself, a child that is so helpless that every single aspect of her daily living has to be conducted for her. So many things that are typically taken for granted I now praise God for. <br />
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I try not to ask the dark "why me" question but when days get rough I admit, I do go there. The majority of my days, however, are spent asking God "why me? Why did you bless me so abundantly" and you better believe I praise God every single morning my children wake just because they are breathing and thriving. <br />
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Job 2:10 "What? Shall we recieve good at the hand of God, and shall we not recieve evil?"<br />
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It is in this same "why me Lord" attitude that we read the following research.<br />
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<a href="http://rettsyndrome.wordpress.com/2011/12/22/the-x-factor">http://rettsyndrome.wordpress.com/2011/12/22/the-x-factor</a>/<br />
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</div>I honestly cannot believe that God has blessed us with such amazing research and has brought us so close to a cure for our Annie. I know that she may not be cured in this lifetime, that only God knows when, exactly, He will grace us with her ability to walk, talk, and voice her opinions, thoughts and her dreams but I do know that I will continue to ask God "why me? Why us? Why Rett Syndrome? Why have you decided to bring THIS disease so close to a cure?" and in a perfect time I will ask "Why did you choose to bless MY families life with such an amazing miraculous cure?". Until then I will continue to praise Him for what I do have - and that is far too much. Happy New Year friends!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-DUD49p8kEMk/Tv1TuKT_8NI/AAAAAAAABW4/x4dvl3bi4s4/s1600/IMG_2046.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://4.bp.blogspot.com/-DUD49p8kEMk/Tv1TuKT_8NI/AAAAAAAABW4/x4dvl3bi4s4/s400/IMG_2046.JPG" width="400" /></a></div>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com1tag:blogger.com,1999:blog-8675369465334468208.post-81251719878280786832011-11-25T18:13:00.000-08:002011-11-25T18:13:37.321-08:00Truth in the TinselOne of my favorite things about homeschooling is looking around through blogs of other home schooling moms. I am not a very creative person so I LOVE when other's post about a really great craft or a fun, creative way of teaching so I can take the idea and use it with my own kiddos - weather its teaching Annie something new or just having some fun with all 3 of them. This is exactly what I was doing last week over at <a href="http://www.1plus1plus1equals1.blogspot.com/">1+1+1=1</a> when I was reading about <a href="http://truthinthetinsel.com/buy-the-book">Truth in Tinsel - An Advent Experience for Little Hands</a>. The name intrigued me because I am always looking for ways to steer my kids in the direction of Jesus at Christmas time and away from Santa and presents. So, I dug a little deeper and LOVED what I saw. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-T4JT5cunTQo/TtA9vH1lmMI/AAAAAAAABVU/mf25i8yF7Uw/s1600/cover1-230x300.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-T4JT5cunTQo/TtA9vH1lmMI/AAAAAAAABVU/mf25i8yF7Uw/s1600/cover1-230x300.jpg" /></a></div><div class="separator" style="clear: both; text-align: left;">The book starts on Dec. 1 and runs through Dec. 24. Each day consists of 5 parts: The first part is a clue, the second is a scripture verse, the third is an ornament craft, the fourth is a discussion and the fifth is extras. Through this advent experience our family will go through the whole story of how God gave us His very own Son - the most amazing story ever told! The book is incredibly organized and detailed. It's an ebook so there are hyperlinks to the scriptures and all the templates for the crafts are right there on your desktop. I've looked at a few of the ornaments and have already come up with ways to adapt them for Annie, not to mention all the opportunities we will have to use her computer to communicate about our lesson. I've already decided that instead of having the kids read the "clue" for the day I will have Annie say the clue with her computer. I'm so excited to start this tradition with my kids. I think we will start by buying a small tree to set up in the basement that we can fill with all the ornaments we make. I encourage you to check it out <a href="http://truthinthetinsel.com/buy-the-book">here</a>: Special Black Friday price is only $2.99! But don't worry, if you miss that price the regular price is just $4.99! </div>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com1tag:blogger.com,1999:blog-8675369465334468208.post-6220124418680356532011-11-04T20:11:00.000-07:002011-11-05T06:04:32.802-07:00Home SchoolingI'm thrilled to report that home schooling Annie is going GREAT! We are both still alive and well :) Seriously though, I'm actually quite shocked to say that things are going so well. I've had homeschooling on my heart for years but I don't trust my heart, I'm a total control freak and I was really doubting that this whole home schooling thing was just something else I could control. While that may be true to some degree, it is also very true that Annie's school setting was incredibly unhealthy (<a href="http://annamarymacdonald.blogspot.com/2011/07/we-have-made-decision-to-home-school.html">a recap here</a>). So, the homeschooling bit won out and I'm so happy that it did. <br />
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Annie and I are enjoying a much more relaxed atmosphere and the entire family is enjoying a much happier, calmer household. I can't tell you how liberating it is to not have to research, gather professionals, and meet to battle the school for Annie's basic human needs (which was happening almost weekly). To not have to beg someone or spend the money on an advocate or lawyer to get someone to help Annie go to the bathroom, eat with her peers or .... "gasp"..... spend some time in a gen ed classroom - is not only an enormous chunk of anxiety lifted off of our shoulders but also a very large cost savings for us. <br />
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The BEST news - Annie is flourishing! Our family has seen a much happier Annie and screaming fits are at an all time low. Everyone around her has seen a difference, her "buddy" for bible school has noticed a huge change in her social activity and a much better engagement of her surroundings and art projects that wasn't really there before. I attribute a lot of this to her now being surrounded by people who believe in her, people who believe she is an intelligent little 6 1/2 year old girl trapped inside a body that doesn't work. <br />
<a href="http://2.bp.blogspot.com/-M6XEkrQF4a4/TrSho8_XFTI/AAAAAAAABVE/2vnwVWVJwaw/s1600/296150_10150353900982645_791667644_8064476_2100162280_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-M6XEkrQF4a4/TrSho8_XFTI/AAAAAAAABVE/2vnwVWVJwaw/s1600/296150_10150353900982645_791667644_8064476_2100162280_n.jpg" /></a><br />
Recently I have come across 2 awesome things that describe Annie to a T. The first is the picture above and the second is a quote from an article that I recently read about Maisy, a little girl battling rett syndrome: <a href="http://www.blogger.com/goog_540997807">"</a><span class="Apple-style-span" style="color: #313032; font-family: Arial; font-size: 12px;"><a href="http://www.tribecatrib.com/news/2011/october/1138_bpc-parents-struggle-with-daughters-rare-disease.html">Information is taken in normally, researchers say, but it can’t come out"</a>. </span><span class="Apple-style-span" style="color: #313032; font-size: 12px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> <span class="Apple-style-span" style="font-size: small;">Information is taken in normally - normally, did you read that? Normally! That was always the point I was tying to make with people in education. All of her teachers, therapists, social workers, even her advocates wanted to get it through to me that Annie doesn't learn like typical children learn and that is simply NOT the case. This amazing child is taking everything in, she has been learning everything the typical way that any other kid does for her entire life. The challenging part is to get it OUT but it IS going IN! No special teacher, special curriculum needed - solid proof for full-inclusion that was denied to us year after </span></span></span><span class="Apple-style-span" style="color: #313032;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">year. My heart aches - not for Annie, she is in a better place, she had a family that believed in her and had the resources to home school her - my heart aches for the kids who are being told they "can't" over and over and over. The kids that are told they have no business being with other kids their age because they have nothing to contribute. The children who are denied augmentative communication systems because the school feels that it will be wasted on them. My heart aches for these kids. I imagine they stay strong for a few years and then they start to give up. If there wasn't a cognitive disorder to begin with on will certainly be created in these very intelligent children that have bodies that don't work. What a shame, what a waste, what narrow minded people we can be. </span></span><br />
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<span class="Apple-style-span" style="color: #313032;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I'm not only pointing the finger at people in our district, but also at myself. I believe in Annie 100% but she has never been formally taught many things so when I started home schooling her we started at a pretty basic preschool/kindergarten level. We started using a wonderful program that we found online called </span><a href="http://moffattgirls.blogspot.com/p/ready2read.html"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">"Ready2Read" By Annie Moffat.</span></a><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> I saw this online and instantly thought - this is GREAT! Colorful, easy to adapt - perfect to teach Annie how to read. </span></span><br />
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<span class="Apple-style-span" style="color: #313032;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">It took us a few weeks in September to actually get down to business, we were busy getting James and Grace settled and then just enjoying some calm time and trying to figure out a schedule - when would be best to learn (turns out Annie likes to relax and nap all morning, come 11am she is good to go). But once we got going it was clear that Annie already knew what I was teaching her. I worked very slowly, the 1 week lesson I stretched into 2 weeks and I went over and over words believing that insesant repetition would be the key to Annie learning. Until one day Annie was irritated, looked at her computer and told me "easy" "slow". I realized then that I was just like the public school I pulled her from. I was using my own doubting and quizing over and over to make sure that Annie knew what I was teaching when all the while she was telling me to move on. Sooo, that's what we've done, we have moved on.</span></span><br />
<span class="Apple-style-span" style="color: #313032;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> <span class="Apple-style-span" style="font-size: xx-small;"> </span></span></span><br />
<span class="Apple-style-span" style="color: #313032; font-family: Times, 'Times New Roman', serif;">Annie has gotten through 3 lessons in the Ready2Read curriculum and has continued to be restless, so the other day I pulled out a random stack of sight word flash cards, we hadn't worked on these before but she was asking for something more challenging - to my surprise Annie got 10 out of 10 right! Clearly she knew these words. I moved on to addition (we have worked so hard on literacy that I didn't give a second thought to other subjects so we hadn't gone through these either) turns out Annie knows how to add! Smart girl! Smarter than I gave her credit for. </span><br />
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<span class="Apple-style-span" style="color: #313032;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Well, lesson learned! From now on I will be stepping it up with our bright little student. Despite the illnesses that have plagued Annie already this season, our next move is to see if Annie is, in fact, already able to read - and why wouldn't she? James started reading when he was just 3 years old, who's to say Annie didn't follow suit? I will keep you all posted to see how she does! And of course I will be writing more about what curriculums we are choosing and how we are able to test Annie on all that she knows and is capable of learning. </span></span><br />
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<span class="Apple-style-span" style="color: #313032;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">The smartest of minds could be hidden in a child without a voice stuck in a wheelchair. If we don't help get that information out we will be missing out on something extraordinary. </span></span>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com2tag:blogger.com,1999:blog-8675369465334468208.post-46301586199768790592011-10-11T20:52:00.000-07:002011-11-04T21:05:06.670-07:00It's Been a Week!<div class="separator" style="clear: both; text-align: left;">It started Monday, there was no school! The kids were excited to wake up, watch cartoons and then have friends over. James, Grace and Annie had a blast! And I was thankful to have some time to get some stuff done that I was putting off to the side. Monday ended with family game night at which time Annie started throwing a fit. This is typical so we tried to calm her, laid her on the couch and assumed she was just tired. That night Annie slept all night which is NOT typical but when it DOES happen we don't complain and take it as a blessing. Tuesday she woke late (7am) and I didn't get into her room right away, instead I got myself ready as I watched her through the monitor -I heard a funny sound, looked at the monitor and knew instantly that she was throwing up - this is NOT unusual. Oh boy, now we'll be late, I yelled down to James that he would have to make his and Gracie's breakfast, get himself packed and get shoes and socks on while I gave Annie a bath (Let me just take a second and thank God for my wonderful, independent, easy going, responsible Jamesy!). </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">So, Annie gets a bath, we gather everyone into the car and are off to school by 7:45. I thought it was a little odd that Annie wasn't screaming, squaking or vocalizing super loudly as she usually does but again, I was counting the calm, quiet drive as a blessing. That is, until, Annie threw up again. Ugg, alright, I thought, hopefully my dad can take Grace to school, I'll drop her off after I drop James off.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div>With James and Grace succesfully dropped off I took Annie home, on the way she threw up again. We got home and first thing I did was put her back into the tub and got her dressed into some comfy Pj's - she'll be spending some time watching movies for sure. After the bath I got Annie all settled into her comfy spot on the couch with her heated blanket - instantly she was asleep. "Great" I thought "I'll wash Annie's sheets and get a workout in and then I'll be able to spend the day snuggling with my little girl". At that moment Annie started throwing up again (glad I put down those towels). I ran to her, got her limp body into a position so she wouldn't aspirate as she was throwing up and realized, wow, she's REALLY sick. I threw the laundry in, got Annie some new towels and grabbed the ringing phone - it was my dad, apparently Grace didn't have school today - hmmmm, time to shine up that "Mother of the Year award".<br />
So my dad drops off sweet Gracie and as I'm in the driveway getting her into the house a car pulls up - "Oh Crap! Totally forgot that Annie's social worker was supposed to come by for her monthly visit". So, I give her the run down and she's fine with coming in the house and braving the airborne germs that may be lingering. As we are chatting I hear Annie crying, loudly - I run to her side and realize she's crying with her eyes closed - that's weird but really, not that weird - Annie DOES have Rett Syndrome and what would be unthinkable for my typical kiddos is sometimes status quo for Annie. We go on with our meeting, Annie goes on crying, I ask our social worker (who is a seasoned mommy of 5 with 1 Down Syndrome sweetie) if she thinks this is something that I should be more concerned about, she turns it back on me, feeling confident in my mothers instinct (apparently she didn't see that the mothers award is in the shop being polished).<br />
Immediatly after our social worker leaves Annie throws up again but this time she doesn't even wake up. OK, now THIS is really weird. I clean her up only to realize that now she has diarrhea and is still not waking. I do the thing I always do when I'm freaked out, I call for the second opinion - AKA - Daddy! Scott says that I should trust my instincts but keep him posted (honestly, doesn't he realize that a call to him means HE needs to make the decision - YES, I realize he has no idea what's going on because he is not here!). So, I clean Annie up once again, realize Gracie needs to eat lunch (thankfully Gracie follows suit with her big brother and thinks its "fun" to make her own meal) so she prepares her lunch while I throw in another load of laundry and run back up the stairs to pick Annie up who is now completely lifeless and dry heaving without waking, and then, it happens - her eyes POP open and dart to the left, but I can't seem to get her to respond to me, I call her name, shake her, move her face "oh God, this is a seizure". I wonder if I'm over reacting so of course, I call Scott - he tells me, "hang up and call 911". I hang up, Annie is now limp and falling asleep, she is breathing and seems to be a bit better but not out of the woods. Ok, I thought, peds are out to lunch so maybe I should take her to the ER. I call Scott AGAIN and he says he's already in route on the way home. When he gets home he takes one look at the little pile of Annie on the couch and says she needs to go to the peds -Yep, I know, however they are closed for lunch right now or else I would have taken her there instead of suggesing the ER. So, we wait until lunch is over, call and get into the peds - Annie is now so limp and lifeless, she continues to throw up without waking. We get her into the car and decide she can't even sit in her wheel chair, she's so limp Scott needs to carry her. Annie's doc comes in and all of a sudden she does the wake up, look to the left but not respond "seizure" thing again. Our ped says - lets run a pulse OX but I'm afraid you will need to head to Beaumont ER. We of course do, all the while Annie is still asleep and dry heaving. We drop Grace off with my mom and head to the ER.<br />
As we walk into the Beaumnot ER I assume we are there for some IV fluids and just a watch but things quickly turn when I look at our slip and we by pass triage and are written as "Urgent". I assume this is because of her "chair", people always get bent out of shape when they see a special needs kiddo. There aren't any beds so we are in the hall for a very short time, the nurses get our history and we are quickly put into the next available "room". We tell the docs the story and realize, it's now 4pm and Annie is STILL not awake or arrousable, it's obvious the doctors are VERY concerned, they come in to take more info and Annie does it again, she opens her eyes, looks to the left and is unresponsive except now she is twitching..... hard - we tell the docs, "this is what's bothering us" but they are steps ahead of us and have an enteroge in the room in split seconds, giving meds and preping for a spinal tap, they fear Annie has meingitis. They tell us that was a definate seizure and with the quick onset of symptoms and the inability to awake Annie they are deeply concerned, they have already checked her for the basics and are now concerned that she has meningitis, encephalitis or worse. They ask if we would consent to a spinal tap. Scott and I are shocked (we are well aware that most kiddos with Rett Syndrome have seizures so when they happened we thought "well, she DOES have rett"), we ask about pain but we're told that since Annie is unresponsive they don't want to give her further meds to sedate her, we agree to the spinal and to our shock Annie barely flinches, she opens her eyes for seconds but otherwise doesn't really respond. Then we're moved to the PICU.<br />
We are reequainted with the PICU and introduced to a fantastic nurse. We settle in for the night realizing that we aren't going anywhere anytime soon. Annie is now on an IV for rehydration and antibiotics. Annie sleeps all night long which is NOT like her at all. The next day she crabs a bit and opens her eyes but just briefly, we and the hospital staff, continue to be very concerned with her behavior. Tests start coming back and of course there are no answers, everything comes back negative and there is seemingly no cause to Annie's sickness.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-4GOc6ww-b_M/TpT3wsOlxwI/AAAAAAAABSo/zStv1I6uJI0/s1600/Annie+hospital.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-4GOc6ww-b_M/TpT3wsOlxwI/AAAAAAAABSo/zStv1I6uJI0/s320/Annie+hospital.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sweet Annie opens her eyes.<br />
<div style="text-align: left;"><span class="Apple-style-span" style="font-size: small;">A quick 40 minute EEG was performed to make sure that Annie wasn't having any more seizures. As time ticked on Annie got better and better, she became more and more alert and by evening this is what we saw: </span></div><div style="text-align: left;"><span class="Apple-style-span" style="font-size: small;"><a href="http://4.bp.blogspot.com/-qY-xedSlKB8/TpUFmOFMhHI/AAAAAAAABS4/UpVwPG2DilI/s1600/Annie+hospital+6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-qY-xedSlKB8/TpUFmOFMhHI/AAAAAAAABS4/UpVwPG2DilI/s320/Annie+hospital+6.jpg" width="239" /></a></span></div></td></tr>
</tbody></table>We stayed put for one more night and by Thursday morning it was clear that Annie was completely better. <a href="http://1.bp.blogspot.com/-vRo6j9wO8zI/TpUI7Hb9LXI/AAAAAAAABTA/F7qCz7OY2ZA/s1600/Annie+hospital+5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-vRo6j9wO8zI/TpUI7Hb9LXI/AAAAAAAABTA/F7qCz7OY2ZA/s320/Annie+hospital+5.jpg" style="cursor: move;" width="239" /></a><br />
We got out of the room and headed to the Children's play area in the hospital.<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-YaxRJmAn8ww/TpULi27H2zI/AAAAAAAABTQ/HSzj_3IexG8/s1600/Annie+hospital+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-YaxRJmAn8ww/TpULi27H2zI/AAAAAAAABTQ/HSzj_3IexG8/s320/Annie+hospital+3.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">can you tell that Beaumont has a FANTASTIC playroom? <br />
<span class="Apple-style-span" style="font-size: small;"><a href="http://1.bp.blogspot.com/-a15KAScNp4M/TpULmRLZqfI/AAAAAAAABTY/UGiSm9BczYs/s1600/Annie+hospital+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://1.bp.blogspot.com/-a15KAScNp4M/TpULmRLZqfI/AAAAAAAABTY/UGiSm9BczYs/s320/Annie+hospital+2.jpg" style="cursor: move;" width="320" /></a></span><br />
<span class="Apple-style-span" style="font-size: small;">Our nurse actually came into the play area to let us know that the EEG came back clear and we would be able to leave! Hooray! No actual cause was found for Annie's sickness, the thought is that she had some sort of GI virus that hit her fragile body so hard that it caused her to have seizures. We were sent home with emergency seizure medication and were told that 1 of 3 things would happen - 1. this is the start of seizures for Annie, the vast majority of girls with rett syndrome experience seizures on a regular basis so it's likely this may be the case for Annie. 2. She will be more suseptible to seizures when she is sick. or 3. this was a one time, harsh reaction to terrible virus that came on quickly. We are choosing to believe #3</span></td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-jLbV0ybxCXU/TpULeRAtylI/AAAAAAAABTI/tDFpClqYy10/s1600/Annie+hospital+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-jLbV0ybxCXU/TpULeRAtylI/AAAAAAAABTI/tDFpClqYy10/s320/Annie+hospital+4.jpg" width="239" /></a></div>A HUGE thank you to every single person at Beaumont Royal Oak. They took such great care of our sweet little Annie and Scott and I as well. It's a blessing to know that if, God forbid, we ever need to return to the hospital we will do so with piece of mind that we are in the very best of hands. <br />
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This experience has once again reminded me that as much as I want this beautiful little angel, Annie has never and will never be mine. She belongs to Him. I am just the person who has the privledge of loving her and caring for her but I have no control over what happens to her. God has a perfect plan for her life and she is safely wrapped in His hands. He will work ALL things for good. I will continue to fight for her, send her to the very best of doctors, and take the best care of her that I know how but I am also learning how to put my trust in Him. "For I know the plans I have for you", declares the Lord, "plans to prosper you and and not to harm you, plans to give you hope and a future". Jeremiah 29:11The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0tag:blogger.com,1999:blog-8675369465334468208.post-26386108199458865512011-09-16T18:56:00.000-07:002011-09-16T18:58:34.287-07:00Quest for a Cure is here again!<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-mNcBn37qnQ4/TnP8d3Va3kI/AAAAAAAABRQ/D8b0-mMDEks/s1600/postcard.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-mNcBn37qnQ4/TnP8d3Va3kI/AAAAAAAABRQ/D8b0-mMDEks/s320/postcard.JPG" width="320" /></a></div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Hi Friends! I'd like to extend an invitation to all of you to our second annual </span><a href="http://www.questforacure.net/"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Quest for a Cure</span></a><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> 1K walk and family fun day at Inglenook Park in Southfield! The day will consist of a short walk and then lots of fun for the kids with face painting, balloon animals, pumpkin painting and TONS of food, then some great raffles and prizes for the adults. There is NO FEE for coming out for the day, bring all the kids and show your support with a donation of any size. </span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-KOJL9LaDhdQ/TnP9mtlLQaI/AAAAAAAABRU/ydOB7AhJWSs/s1600/Annie+photoshoot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="320" src="http://2.bp.blogspot.com/-KOJL9LaDhdQ/TnP9mtlLQaI/AAAAAAAABRU/ydOB7AhJWSs/s320/Annie+photoshoot.jpg" width="239" /></span></a></div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; -webkit-text-decorations-in-effect: underline; border-collapse: collapse; color: #0000ee; line-height: 19px;"></span></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">As most of you know, Annie </span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; border-collapse: collapse; line-height: 19px;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">was diagnosed with Rett Syndrome at just 16 months old. We watched in agony as it took away her ability to stand, crawl, walk, speak and feed herself. It was devastating. Our beautiful, smart little girl became trapped inside her body.</span></span><br />
<div class="yiv1789450941MsoNormal" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; border-collapse: collapse; font-family: 'times new roman', 'new york', times, serif; font-size: 16px; line-height: 1.2em; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; outline-color: initial; outline-style: none; outline-width: initial; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">However, there is now HOPE! Researchers have proven that Rett is REVERSABLE! It is poised to be the FIRST childhood neurological disease to be CURED!</span></span></span><br />
<div class="yiv1789450941MsoNormal" style="line-height: 1.2em; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; outline-color: initial; outline-style: none; outline-width: initial; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">You can help make this a reality! </span></span><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;"> </span></span></span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">Join us for a 1K walk and family fun day as we raise money for research that will one day cure Annie and hundreds of thousands of girls and women worldwide who are suffering daily with Rett Syndrome.</span></span></span><br />
<div class="yiv1789450941MsoNormal" style="line-height: 1.2em; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; outline-color: initial; outline-style: none; outline-width: initial; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">We hope we can count on you to help us in our fight to rescue our daughter from this horrible disease.</span></span></span></div><div class="yiv1789450941MsoNormal" style="line-height: 1.2em; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; outline-color: initial; outline-style: none; outline-width: initial; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;"><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"></span></span></span><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">If you are unable to attend but would like to support our efforts, donations can be made in Annie's honor online:</span></span><a href="http://www.blogger.com/goog_1024140331"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;"> </span></span></a></span><span style="color: blue; line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="yshortcuts" id="lw_1316220833_10" style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><a href="http://www.blogger.com/goog_1024140331"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">www.questforacure.net </span></span></a></span></span><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><a href="http://www.questforacure.net/"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;"> </span></span></a></span></div><div class="yiv1789450941MsoNormal" style="line-height: 1.2em; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; outline-color: initial; outline-style: none; outline-width: initial; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 1.2em; outline-color: initial; outline-style: none; outline-width: initial;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: small;">Thank you, thank you for your continued support of our Annie and our family. Stay tuned to this blog for excited research updates which are sure to be forthcoming and of course updates on our champion, Annie! Your love, support and generosity mean more to us than we could ever express! </span></span></span></div></div></div>The MacDonald Familyhttp://www.blogger.com/profile/12121715561800745719noreply@blogger.com0