Through the first night Logan slipped in and out of a "sleep-like" state. His oxygen requirement was a bit scary for me. Although he didn't like the way the tubing felt in his nose it did allow him to breathe easier. 100% on 15 litres for his stay in the PICU. Tuesday morning Logan started to feel very warm. His fever had been up and down but this seemed different. He didn't feel well and within a few hours it was easy to see why. A rash started to cover his body, creeping from the trunk out.
Along with it came swelling and stiff joints. When they did morning rounds I started to learn what I could and pick up on all the tips and clues that they gave out. They still felt we were dealing with a very virulent strain of strep. As his symptoms really started to show them self the Drs. were fairly sure about the strep diagnosis. As he became more and more uncomfortable with the rash (swelling, heat, fever) I tried to get some meds but his respiratory system was so depressed that they couldn't let him have anything. WE opted for cool cloths on his forehead,arms and legs for a bit of relief. His worst issues were his tongue and the inside of his mouth. The strep had affected his taste buds and tongue. The only thing he could take by mouth was sips of water. Thankfully he had IV's going to keep him hydrated.
Logan spent the day between this world and another one. We just played along with him, if you didn't he was very upset. The rash really got bad, not an inch of him was left alone. The swelling got so bad that his little eyes became tiny little slits. It was so hard watching him but he did awesome considering all that he was dealing with. Getting in and out of the bathroom was a huge affair, he had to drag is pole and get all the cords up and out of the way. He completely refused any idea of bedpans.... No food again for the day, that made 4 days for Logan without food. He would try to think of something he would like but then when it came he just couldn't eat it. That night was the worst one, a precious little girl in the room next to us died... talk about reality check.... then an hour later the fire alarms started going off. I had no idea what was happening but when I stuck my head out the nurse told me no worries in the PICU drills didn't mean we all had to run out. It was our second night of no sleep but definitely a long night.
They decided that Logan should have a PICC line. His IV lines weren't looking very good and they felt he would be better off if they had a longer term site. Once again I realized that he was much sicker than we ever dreamed and that home was still a ways off. The cultures finally came back and it was strep and it was a horrible strain. They told us the doubling rate was every 53 minutes.... WOW! He started to require a bit less oxygen and we started seeing a bit better vitals. Finally his oxygen saturation was better and his soaring heat rate left the 160's. He was hovering in the 135-140's it felt so much better even though we were still way too high! His output from the tube was still pretty consistent, by now his output was over 3200 cc's. They started talking about the possibility that we were moving on downstairs.... We were pretty excited to think that Logan was getting better. He kept telling us that he was leaving the hospital Friday at the latest so he could go to the premier of Star Wars. After an ultrasound we were cleared to head to the regular floor. About the same time I noticed that Logan just didn't seem right. He was a bit loopy and he started to feel bad. They checked him out and decided that he was okay. Then on the way to the floor he crashed and passed out. By the time we got into a room the rash was even redder and his heart rate was up again. A whole flurry of Drs and nurses were in and out. His new team couldn't figure out why he was sent down and called in the PICU drs to discuss if he got to stay. They decided that moving him might be worse and allowed us to stay but both sets of docs would follow him for awhile.
continued yet again................
Saturday, March 31, 2012
Monday, February 27, 2012
Back to the Blog............. part 1
I have been the worst blogger ever!! Facebook has made it way too easy to just pop out things one line at a time. Problem is keeping things down for memories isn't very possible.... well, maybe better than it used to be since they have Timeline but all in all you get the point if you blog and FB.
We had a tough February this year..... Usually it would be cold, snow, and ice that plagued us but not this time.... the weather has been at a record warm. BUT that seems to have allowed the germs to survive much longer than normal. The very beginning of February the boys we invited to Great Wolf Lodge for a swimming overnight. They were so excited to go and have fun.... we packed them up and sent them off. They did indeed have a wonderful time but when they got home all the boys looked like they had been beat up. Cuts, bumps, and bruises all around.... Taylor actually had a busted lip and I worried about loose teeth. He had crashed into one of his friends heads in the wave pool. Logan had scraped his knuckles really bad on the bottom of the pool. Everyone was tired but we knew they would heal and really we weren't worried about any of it. A few days later the boys went snow skiing with the homeschool group and again had a fun day. All seemed fine that night.
Saturday morning Logan complained of flu-like symptoms. We did the usual quaratine deal and kept him in his room. He didn't want food, felt nauseous, was fever free, and could drink water.... So strange symptoms.... The next day he told me his chest was starting to hurt. Still felt horrible but seemed okay, no real fever. Tim and I decided that he should see the Dr the next day. I got on FB and checked in with one of the nurses and let her know I would be calling and to hold me an appointment if possible. She said to call first thing in the morning.
I called in and they gave me 2 options. 1) a 9:30 appointment or 2) a 4:00 appointment so I could also be seen. Logan really looked terrible and I didn't want to wait so we took the 9:30 appointment. Once we got there they quickly got us in and took his vitals. His heart rate was high but he wasn't moving air well, he also had a 100.2 fever. Dr. Watson sent us right away to Children's for a chest x-ray, I asked if we could go to the Urgent Care for this. I was sure he told me yes, I had explained that I always get lost driving to Children's in Dayton and was afraid I would have trouble getting there. He said they might keep him overnight so I ran back by the house and grabbed several things for Logan and myself "just in case". I had tried to track down Tiffany and couldn't find her so I called Racquel and asked if I could drop off Taylor and Kendall so they didn't have to go in the ER and risk picking up more germs. She said yes just as Tiffany called and was able to meet me.
Look how sick he looks......
We drove over to the Urgent Care and signed in. There wasn't an order for tests so I called the Dr office only to find that they had went to lunch. So I called around and got the nurses cell number and called her at home to see if they had ordered the tests. She told me she was sure he wanted Logan taken to a Children's Hospital not the Urgent Care..... so off we went Logan seeming slower but moving along with me. We drove down to the Liberty Campus of Children's in Cincy. It is easy to get to and I thought worse come to worse they would keep us there.
Once we got to the Liberty Campus of Children's ER and got signed in we had to wait to be seen for about 30 min. It was cheerful and bright and everyone was very nice. They immediately started having trouble getting good pulse ox numbers for Logan so they gave him a nebulizer treatment. His heartrate was over 170, pulse ox 70, bloodpressure was very low, his temp was up to 103.6 since the morning. They did 3 nebulizer treatments and oxygen without any real change so they decided to do a continual Albuterol treatment. He also was getting oxygen to help stabilize him. He really didn't like that at all, the albuterol was making him very jittery... but they continued it while we headed down for x-rays. Once they read the films they immediately dx'd him with bilateral pneumonia and sent orders to have him transferred to Children's. The facility there was not an overnight facility. We waited there till they could arrange a bed for him and then we headed out with the ambulance tech, a dr, and a rt. I had no idea that wasn't the normal way of doing things. Logan got to watch Cars on the trip down.... he liked that and asked me to take pictures of him in the ambulance... lol
Once we got to Children's things really got busy and blurry to remember on my part. We didn't go to the ER at all. Right up the elevator to the PICU, his room was ready and the team was waiting for us. They examined him and watched him for a few hours. His numbers were awful and his temp was steady but climbing again. They drew labs, had an ultra sound and decided he would need a chest tube to drain the infection from behind his lung. He was diagnosed with the Bilateral Pneumonia/Empyena. They thought either strep or staph infection was the cause. We needed to wait till morning to find out...... The chest tube proceedure was done in the room with Ketamine and versed for Logan. He did great during the procedure but had tons of trouble coming out of it.... He was so disoriented that he thought we were at a hotel.... lol He continued with hallucinations for about 30 hours. His vitals were really a mess and he felt horrible.... Everytime he would start to drift off he would wake up yanking at the leads and tubes. Finally they put "no-nos" on his elbows so he couldn't bend his arms and get at the tubes. Needless to say the first night we didn't sleep.
Continued next time.................
We had a tough February this year..... Usually it would be cold, snow, and ice that plagued us but not this time.... the weather has been at a record warm. BUT that seems to have allowed the germs to survive much longer than normal. The very beginning of February the boys we invited to Great Wolf Lodge for a swimming overnight. They were so excited to go and have fun.... we packed them up and sent them off. They did indeed have a wonderful time but when they got home all the boys looked like they had been beat up. Cuts, bumps, and bruises all around.... Taylor actually had a busted lip and I worried about loose teeth. He had crashed into one of his friends heads in the wave pool. Logan had scraped his knuckles really bad on the bottom of the pool. Everyone was tired but we knew they would heal and really we weren't worried about any of it. A few days later the boys went snow skiing with the homeschool group and again had a fun day. All seemed fine that night.
Saturday morning Logan complained of flu-like symptoms. We did the usual quaratine deal and kept him in his room. He didn't want food, felt nauseous, was fever free, and could drink water.... So strange symptoms.... The next day he told me his chest was starting to hurt. Still felt horrible but seemed okay, no real fever. Tim and I decided that he should see the Dr the next day. I got on FB and checked in with one of the nurses and let her know I would be calling and to hold me an appointment if possible. She said to call first thing in the morning.
I called in and they gave me 2 options. 1) a 9:30 appointment or 2) a 4:00 appointment so I could also be seen. Logan really looked terrible and I didn't want to wait so we took the 9:30 appointment. Once we got there they quickly got us in and took his vitals. His heart rate was high but he wasn't moving air well, he also had a 100.2 fever. Dr. Watson sent us right away to Children's for a chest x-ray, I asked if we could go to the Urgent Care for this. I was sure he told me yes, I had explained that I always get lost driving to Children's in Dayton and was afraid I would have trouble getting there. He said they might keep him overnight so I ran back by the house and grabbed several things for Logan and myself "just in case". I had tried to track down Tiffany and couldn't find her so I called Racquel and asked if I could drop off Taylor and Kendall so they didn't have to go in the ER and risk picking up more germs. She said yes just as Tiffany called and was able to meet me.
Look how sick he looks......
We drove over to the Urgent Care and signed in. There wasn't an order for tests so I called the Dr office only to find that they had went to lunch. So I called around and got the nurses cell number and called her at home to see if they had ordered the tests. She told me she was sure he wanted Logan taken to a Children's Hospital not the Urgent Care..... so off we went Logan seeming slower but moving along with me. We drove down to the Liberty Campus of Children's in Cincy. It is easy to get to and I thought worse come to worse they would keep us there.
Once we got to the Liberty Campus of Children's ER and got signed in we had to wait to be seen for about 30 min. It was cheerful and bright and everyone was very nice. They immediately started having trouble getting good pulse ox numbers for Logan so they gave him a nebulizer treatment. His heartrate was over 170, pulse ox 70, bloodpressure was very low, his temp was up to 103.6 since the morning. They did 3 nebulizer treatments and oxygen without any real change so they decided to do a continual Albuterol treatment. He also was getting oxygen to help stabilize him. He really didn't like that at all, the albuterol was making him very jittery... but they continued it while we headed down for x-rays. Once they read the films they immediately dx'd him with bilateral pneumonia and sent orders to have him transferred to Children's. The facility there was not an overnight facility. We waited there till they could arrange a bed for him and then we headed out with the ambulance tech, a dr, and a rt. I had no idea that wasn't the normal way of doing things. Logan got to watch Cars on the trip down.... he liked that and asked me to take pictures of him in the ambulance... lol
Once we got to Children's things really got busy and blurry to remember on my part. We didn't go to the ER at all. Right up the elevator to the PICU, his room was ready and the team was waiting for us. They examined him and watched him for a few hours. His numbers were awful and his temp was steady but climbing again. They drew labs, had an ultra sound and decided he would need a chest tube to drain the infection from behind his lung. He was diagnosed with the Bilateral Pneumonia/Empyena. They thought either strep or staph infection was the cause. We needed to wait till morning to find out...... The chest tube proceedure was done in the room with Ketamine and versed for Logan. He did great during the procedure but had tons of trouble coming out of it.... He was so disoriented that he thought we were at a hotel.... lol He continued with hallucinations for about 30 hours. His vitals were really a mess and he felt horrible.... Everytime he would start to drift off he would wake up yanking at the leads and tubes. Finally they put "no-nos" on his elbows so he couldn't bend his arms and get at the tubes. Needless to say the first night we didn't sleep.
Continued next time.................
Friday, February 24, 2012
Yummy and Healthy Muffins
These muffins have become a favorite of almost everyone in the family. I love the texture and taste but even more I love that these muffins are healthy and not full of junk! I use the pulp from the juicer for the kale/spinach/carrot. If they mix up a little dry I add some milk since the juicer takes most of the moisture out of the pulp.
1 1⁄2 c flour (unbleached white, whole wheat, or spelt/rice combo)
1 t (each) baking soda, baking powder and vanilla
1⁄2 t (each) salt, cinnamon and nutmeg
1⁄3 c honey
1 egg
1⁄2 c sour milk or lowfat yogurt (plain or vanilla)
1⁄3 c canola oil*
1 1⁄2 c grated or finely processed cored apples and/or carrots
1 c finely chopped kale or raw dark leafy greens (chard, collard greens)
1⁄2 c any dried, unsweetened chopped fruit and/or chopped nuts**
Instructions
Preheat oven to 400.
In a mixing bowl, combine flour, baking soda and powder, salt and spices.
In another bowl, mix honey, vanilla, egg, yogurt, apples/carrots, kale, dried fruit/nuts. Add wet ingredients to dry ingredients, stirring just until moistened. Fill 12 greased muffin cups 2/3 full. Bake in preheated oven for 15 minutes or until a toothpick inserted in the centre of the muffin comes out clean.
* You can substitute so me of the canola oil (and up the nutrition value and flavour) by using apple sauce, or soaked, pureed prunes.
1 1⁄2 c flour (unbleached white, whole wheat, or spelt/rice combo)
1 t (each) baking soda, baking powder and vanilla
1⁄2 t (each) salt, cinnamon and nutmeg
1⁄3 c honey
1 egg
1⁄2 c sour milk or lowfat yogurt (plain or vanilla)
1⁄3 c canola oil*
1 1⁄2 c grated or finely processed cored apples and/or carrots
1 c finely chopped kale or raw dark leafy greens (chard, collard greens)
1⁄2 c any dried, unsweetened chopped fruit and/or chopped nuts**
Instructions
Preheat oven to 400.
In a mixing bowl, combine flour, baking soda and powder, salt and spices.
In another bowl, mix honey, vanilla, egg, yogurt, apples/carrots, kale, dried fruit/nuts. Add wet ingredients to dry ingredients, stirring just until moistened. Fill 12 greased muffin cups 2/3 full. Bake in preheated oven for 15 minutes or until a toothpick inserted in the centre of the muffin comes out clean.
* You can substitute so me of the canola oil (and up the nutrition value and flavour) by using apple sauce, or soaked, pureed prunes.
Sunday, March 13, 2011
Nineveh......
For the last couple weeks I have been almost overcome with emotions... My heart is just plain hurting for families that I don't even really know. I may have met them in real life or maybe only through the big wide web. But there is a common thread with these families. Children. Not just any children but children with challenges... Kate, Aiden, Gwendolyn, Sophia, Cash, Lucy, Annabelle, Bennett, and tiny twins Lucy and Noah.
Every night I sit in my chair crocheting hats and my mind just spins. I know a long time ago before I was even born there was a plan in place..... a plan that was laid for my life. It just amazes me to know that before I was born, God knew the plan of my life. He knew all the ups and downs, he knew I would be a terrible failure at times and he knew the journey my life would take. In time there is b.c. and then a.d. For me my b.c. was life before Mackenzie. That was a turning point in my life, she literally had more impact on my life in the 21 weeks and 3 days than you would imagine possible.
My journey has brought me to a place where I can say I truly feel I belong, I can feel that God is plotting my steps and most of the time I willing walk and even skip sometimes along the path. Raising my kids, watching my older girls sprout wings and starting a business that benefits others. Through the business I have been acquainted to so many families..... too many families sometimes. Families with medical challenges with their precious children. My heart wants life to be kind and fun, sunny days no rain on the horizon. But, in life there is rain, there must be rain, rain that sometimes comes with thunder and lightning, and with rain comes so many blessings. I know that without the rain there would be no colorful flowers popping through the ground. I remember one time watching a family go through the grief of loosing a child and thinking "I could NEVER walk through that, I would crawl in the closet and not come out". Then one day the unthinkable happened and we lost a precious miracle baby girl. She was taken. Just like that. Then I found that on June 17th when I crawled into our car and headed home with no baby that I "could" do "that". I could put on foot in front of the other. Don't be fooled, I didn't skip, run, heck I sometimes fell to the ground and just cried. BUT, I did "make it". On that journey I learned many things about myself and my God. He was there right beside me. He cried right there with me. He carried us right where we were.
From our grief I have learned that Mackenzie's life I was given a heart for others. I was given a chance to be a blessing to others. That maybe I could take a portion of their pain and help them navigate.
Our business tries through our Hats for Hope to get custom made hats for kids and adults going through chemo and other hair stealing disease. If they are old enough we try to involve them in the design and color of the hats. Our deal is easy, you pick a bucket hat, we make it and send it to you and you send us a picture wearing the hat. The faces we see peering out from under the hats melt our hearts. Their smiles enjoying wearing the hats is wonderful. Knowing that even if only a moment they are having fun and smiling. One of the little girls just stole my heart. Little Kate....... 6 years old and such a spunky spirited little girl. We watched and prayed as she went through treatment last year for aggressive brain cancer. We just absolutely rejoiced when her scan came back that she was cancer-free! Now almost 6 mo later her families world has come to a screeching halt as she has once again been diagnosed with brain cancer. In a way I came to the same screeching halt. I just wanted to ignore this, it hurt too much. Sweet Kate was supposed to be okay now.... but her journey with this nasty disease is not over. More treatment, more discomfort, more uncomfortable unknowing. My heart became broken for her and her family. Her parents and her siblings, they all walk this walk.
So back to the title of the post. Yesterday I opened the mail and found myself in tears. Sweet Kate's picture was staring back at me, a reminder that we need to get even more prayer warriors on their knees for this amazing little girl. This card came out of the blue and gave me the familiar tap on the shoulder to call people to pray. To let them know that we would be calling others to pray. The Dr's. are giving less positive outcomes this time than last. This family is coming to grips with the brutal reality that their sweet 6 yr old once again must endure a painful treatment that will no don't leave her sick and without her beautiful golden locks. They have amazed me with not only they're take charge let's go attitude but also they're unwavering faith and transparency.
So now I see I have been a bit like Jonah..... God has been tugging the line and I have been trying to duck and hide. Don't get me wrong, I pray for sweet Kate many times a day. She is one of many children that we pray for on a regular basis. But I am feeling that God is wishing me to do more........ The unexpected card in the mail reminded me of that. So before I am swallowed into the belly of a whale (can I just say ewwwwwww) I am going to do just that. Please pray for Sweet Kate, aren't her eyes just plain beautiful?? almost haunting......
My god is the same today as he was before this relapse for Kate. He healed her before and he will again. My prayers are for healing this side of heaven and peace for this family.
Thursday, February 24, 2011
Marriage....................... Oh my!
Marriage...........
As a child I watched with interest as my parents navigated the waters of marriage. They made it look seamless......... I was so blessed to have a blissful childhood. We lived in a nice home that my Dad had worked and remodeled with his own hands... He worked hard at his job and at home in his off time. I don't even remember seeing a repairman in the house and I don't think we ever took out car "to the shop" to be worked on. My Dad was basically Superman, nothing he couldn't do.
My Mom, was your sitcom Mom. She cooked, cleaned, and handed out discipline. She taught us to do our best and love God. She worked tirelessly to save money and teach us to be good stewards. I never remember her saying she couldn't do something or that we were making her crazy. But as I think back to my childhood the thing I remember the most was that there was no yelling or fighting (well, not my parents anyway). I thought they ALWAYS got along.
As an adult I have strived to be that same parent. I didn't realize till just recently that there were times when Mom and & Dad were NOT happy, they did disagree.... wow! They made a commitment to not fight in front of us or anyone else. They did an awesome job because this shocked me......... It also helped me to realize that in my reality there were fights, they just didn't happen in front of us.
In my own marriages I have struggled......... I'm a bit bossy and controlling.... well, that is because I am right.... lol I like to run the show and keep everything organized. It is so hard to realize that my vision might not be someone else's. There are times you don't get your opinion. Life just sucks sometimes, every once in awhile I hear a tiny tiny voice reminding me that I am my husbands helpmate......... not his leader. He is supposed to be mine... Boy, that one is hard for me!
Lately we are struggling a bit, neither of us are contemplating running towards any doors but we are butting heads more than we need to. It is stealing our joy and our time, let me say there is precious little time to spare. We each try in half-hearted attempts, and then fall on our face. Tim is incredibly busy and work and home is the same...... busy, busy, busy. Our hat businees is taking off with is wonderful!! I have been steadily busy since the fall.... great news.... well almost. With the busy comes the problem of balancing time. Tim works a lot of hours and with the kids activities keep us off our rocker busy. So, last week I decided that I was hauling our behinds to the church for a marriage conference. Have you ever attended one? They are incredible, such a good day and our hearts were renewed..... Now to figure out how to keep them that way.
Tim, I love you so much. You try to keep us together and when we work together there is nothing we can't do~
As a child I watched with interest as my parents navigated the waters of marriage. They made it look seamless......... I was so blessed to have a blissful childhood. We lived in a nice home that my Dad had worked and remodeled with his own hands... He worked hard at his job and at home in his off time. I don't even remember seeing a repairman in the house and I don't think we ever took out car "to the shop" to be worked on. My Dad was basically Superman, nothing he couldn't do.
My Mom, was your sitcom Mom. She cooked, cleaned, and handed out discipline. She taught us to do our best and love God. She worked tirelessly to save money and teach us to be good stewards. I never remember her saying she couldn't do something or that we were making her crazy. But as I think back to my childhood the thing I remember the most was that there was no yelling or fighting (well, not my parents anyway). I thought they ALWAYS got along.
As an adult I have strived to be that same parent. I didn't realize till just recently that there were times when Mom and & Dad were NOT happy, they did disagree.... wow! They made a commitment to not fight in front of us or anyone else. They did an awesome job because this shocked me......... It also helped me to realize that in my reality there were fights, they just didn't happen in front of us.
In my own marriages I have struggled......... I'm a bit bossy and controlling.... well, that is because I am right.... lol I like to run the show and keep everything organized. It is so hard to realize that my vision might not be someone else's. There are times you don't get your opinion. Life just sucks sometimes, every once in awhile I hear a tiny tiny voice reminding me that I am my husbands helpmate......... not his leader. He is supposed to be mine... Boy, that one is hard for me!
Lately we are struggling a bit, neither of us are contemplating running towards any doors but we are butting heads more than we need to. It is stealing our joy and our time, let me say there is precious little time to spare. We each try in half-hearted attempts, and then fall on our face. Tim is incredibly busy and work and home is the same...... busy, busy, busy. Our hat businees is taking off with is wonderful!! I have been steadily busy since the fall.... great news.... well almost. With the busy comes the problem of balancing time. Tim works a lot of hours and with the kids activities keep us off our rocker busy. So, last week I decided that I was hauling our behinds to the church for a marriage conference. Have you ever attended one? They are incredible, such a good day and our hearts were renewed..... Now to figure out how to keep them that way.
Tim, I love you so much. You try to keep us together and when we work together there is nothing we can't do~
Friday, January 28, 2011
Life
Life just keeps rolling doesn't it? I wake in the morning and hit the floor running. Some days I wonder as I try to pry my eyes open what will the day bring, will it be a good day, will the kids try to drive me crazy fighting over who did what? Will I walk through my day feeling scattered or blessed. In my life I find one thing to be true. No matter what life will just keep rolling.......
There are days when I think I may explode from the sorrow I feel for too many families..... cancer, SMA, surgeries, broken hearts... their days continue to roll too. Fear, grief, and pain.... I want so much to be a help, our lives have been right there in the trenches too. When we lost our sweet baby Mackenzie I truly thought I would just roll into a ball and stay there... You see we had just slid through our days being "good" keeping ourselves inside our own little box. Not really worrying about the lives of others. When I lost her my world was upended.
You see Mackenzie was my wake up call...... she was my angel, she still is. She keeps me grounded and always carrying for others. Because of her I "happened" upon the video that introduced me to the horrors of SMA, and connected me with some awesome families that dealt with the loss of their babies too soon, and some that are fighting to rid their children of the cancer that threatens to steal their children. She has guided my path as we opened our little store and given me a heart to live outside myself.....
After being told by someone that "you give away too much" I got into my car and turned one the radio. Matthew West's My Own Little World came spilling out.... I literally cried as I drove along listening to the words of the song. God doesn't always tap you on the shoulder sometimes he hits you with a ball bat. I KNOW we are doing exactly what he wants us to. I know that I will spend each day trying to do more.
SMA has impacted my life is a crazy way. Nobody in my family has had SMA, none of my friends have children with SMA. But, I have come to respect and be inspired by the families that fight the battle everyday. The children..... oh the children, they are so incredible. They are so bright, they live in a world that restricts their movement. They need help to do most things but they are the most brilliant inspiring kids. One look into their eyes and I know I need to do more. Winter is a scary time for children that have SMA. So many germs, so many illnesses, hospitalizations and those lead to more trouble. To date just in the month of January 9 children have died......... gone. How can we all not be tossing every bit of spare change to research for a CURE!??!
Easy math tells me that SMA will knock at the door of someone I know soon. If that is so then it will knock on the door of someone you know too.... think we need to find that cure?? 1 in 40 people are carriers of the disease.
There are days when I think I may explode from the sorrow I feel for too many families..... cancer, SMA, surgeries, broken hearts... their days continue to roll too. Fear, grief, and pain.... I want so much to be a help, our lives have been right there in the trenches too. When we lost our sweet baby Mackenzie I truly thought I would just roll into a ball and stay there... You see we had just slid through our days being "good" keeping ourselves inside our own little box. Not really worrying about the lives of others. When I lost her my world was upended.
You see Mackenzie was my wake up call...... she was my angel, she still is. She keeps me grounded and always carrying for others. Because of her I "happened" upon the video that introduced me to the horrors of SMA, and connected me with some awesome families that dealt with the loss of their babies too soon, and some that are fighting to rid their children of the cancer that threatens to steal their children. She has guided my path as we opened our little store and given me a heart to live outside myself.....
After being told by someone that "you give away too much" I got into my car and turned one the radio. Matthew West's My Own Little World came spilling out.... I literally cried as I drove along listening to the words of the song. God doesn't always tap you on the shoulder sometimes he hits you with a ball bat. I KNOW we are doing exactly what he wants us to. I know that I will spend each day trying to do more.
SMA has impacted my life is a crazy way. Nobody in my family has had SMA, none of my friends have children with SMA. But, I have come to respect and be inspired by the families that fight the battle everyday. The children..... oh the children, they are so incredible. They are so bright, they live in a world that restricts their movement. They need help to do most things but they are the most brilliant inspiring kids. One look into their eyes and I know I need to do more. Winter is a scary time for children that have SMA. So many germs, so many illnesses, hospitalizations and those lead to more trouble. To date just in the month of January 9 children have died......... gone. How can we all not be tossing every bit of spare change to research for a CURE!??!
Easy math tells me that SMA will knock at the door of someone I know soon. If that is so then it will knock on the door of someone you know too.... think we need to find that cure?? 1 in 40 people are carriers of the disease.
Wednesday, January 12, 2011
Cowabunga!!!!!!!!!!!!
Well, first let me say I am doing quite the awful job of posting once a week in 2011! Gosh, You would think I could pull it together, life is so crazy and I am trying to catch it! Does that ever happen.... do you ever catch up?
In an effort to "enjoy" more and not allow time to slip away we have set up a standing "ski" day this winter. Monday is Kendall's dance class, Tuesday is ski day and Wednesday is piano for the boys and church. Thursday, Friday, and Saturday are flex days. Enjoy the following pictures of our ski days!
For the last week we have been singing praises to God. My friend Racquel and her husband Jonathan welcomed adorable twin babies to the world! They are tiny, born by c-section at 34 weeks, these babies have been prayed and longed for by this sweet family. Sweet Noah and Lucy just might be the luckiest babies born in a long time. I have been blessed to visit them a couple times and they are so precious! When it was time to discharge Racquel they found out that the hospital has a policy that allows her to stay at the hospital in her room until the babies can be released! Great news with the wintery weather and slippery roads.
big prayers for the Stewarts and the Flemmings.... (sweet Bennett gets to come home next week!)
In an effort to "enjoy" more and not allow time to slip away we have set up a standing "ski" day this winter. Monday is Kendall's dance class, Tuesday is ski day and Wednesday is piano for the boys and church. Thursday, Friday, and Saturday are flex days. Enjoy the following pictures of our ski days!
For the last week we have been singing praises to God. My friend Racquel and her husband Jonathan welcomed adorable twin babies to the world! They are tiny, born by c-section at 34 weeks, these babies have been prayed and longed for by this sweet family. Sweet Noah and Lucy just might be the luckiest babies born in a long time. I have been blessed to visit them a couple times and they are so precious! When it was time to discharge Racquel they found out that the hospital has a policy that allows her to stay at the hospital in her room until the babies can be released! Great news with the wintery weather and slippery roads.
big prayers for the Stewarts and the Flemmings.... (sweet Bennett gets to come home next week!)
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