I was wrong

I was wrong, I thought Daniel didn't notice the stares that people give, but he does. Saturday we went shopping to get Beau some new clothes. While walking through the store I was pushing Daniel, we were wandering around just killing time, trying to keep up with Emma and Nate while Beau was in the dressing room. Suddenly Daniel asked if we could please go home now, he was ready to leave. I asked why and he replied with a I'm tired of people staring at me. I said honey no one is staring and without missing a beat he said she is just as a 2 year old in a cart rolled past. I said she little she stares at everyone. He then told me about the people who had stared. I guess, he does notice it, I just didn't know. Now I'm even more self conscious because I now realize he is aware and it bothers him.

27- Medical devices

Daniel just got a medical ID bracelet, and I am thankful they make these, that there is a way in an emergency and I am not there they can see he has a medical condition and pull out the ID information.

26- my sewing skills

I am thankful I can sew. Not only can I sew I can read a pattern. I am thankful I get to Make Emma cute clothes, my kids blankets, and anything else I want.

25-"Uncle" Dan

I am thankful Beau has a friend, that is basically family, down here. Having Dan here has been such a blessing. My kids call him Uncle, and it's nice to know I have someone I can call in an emergency that will come give blessings or drive Beau three hours to pick up a new car cause I'm too sick, or babysit, the list is endless. I don't think it is a coincidence that we ended up in Austin within a month of each other, by total chance. There definitely was a bigger plan there. The kids love him and he is good at eating leftovers so I let him come over when ever he wants.

This is the kids telling spooky stories with him, one night before bed. Emma ended up doing such a good job she scared herself and woke him up in the middle of the night. haha.

24- Beaus Car

I am thankful for Beaus new car. It's fun to drive and it is nice to be a two car family and have 2 reliable cars.It also saves us gas money. plus Daniels walker fits in the trunk so we can take it when we run errands as a family, if we want to.

Oh and we can't forget Beau looks good driving it.

Black Friday

So for the first time in four years I did not go Black Friday shopping, I stayed home a slept. The only place I went was to CVS to get butterfly band aids and liquid band aid. Because Nathan smacked Emma in the head with the neighbors car door. He wasn't supposed to be playing in the car. Poor girl, however she didn't need stitches and is healing up nicely.

It looks alot better now, this picture was right after.

Tika LOVES Emma, she wanted to love on her. I swear dogs can just sense when you need them.

22- Thanksgiving

This should be a thankful post, But instead it's about Thanksgiving dinner. For thanksgiving we went over to a friends house just right around the corner, she is my best friend here in Round Rock. I was really lucky to have found someone so fast who lived right down the street, who has kids similar ages as mine and who has similar interests as me. We split Dinner duties, I did the turkey and stuffing, she did the rest. I was awesome, and we all had a good time. I did miss family, but it's nice to know we have friends, and than in a few short weeks we can go home and see family.

21- The Park

I am thankful we have a clean safe park right across from our house. I am also thankful it was empty today except for a few friends. It was a nice 80* today so we had a picnic and played for 2 hours. So fun for the kids.

20-Being an Aunt

I am thankful I get to be an Aunt! I have 2 new nieces this morning! Ashlyn was born at 6:24 and Jordyn was born at 6:29 this morning! Congrats Tess Kelly, you are an awesome mom and I am so excited for you guys! I am excited to visit Emily and see her new baby. I love all my nieces and nephews.

19 My In Laws

I have been blessed with wonderful In Laws, they treat me like a daughter and love me just as much if not more than their son. I am thankful they raised my awesome husband, and I am thankful my kids get them as grandparents. I know that if anything were to happen to Beau I would still be welcomed into their home and not just because I have the grand kids but because they love me.

18 Sunday Naps

Is there anything better than a Sunday nap? Especially one when you wake up and the house isn't in pieces and no one wakes up up in the middle to tattle on their sibling. I don't think there is. I am thankful I have one day a week that I don't have to do anything except go to church and go home. It's great to have time for a nap.

17 Kai

I am thankful that 9 years ago I convinced my husband to drive 45 min. when we lived in Alaska to adopt a black lab mix puppy. I am also glad he talked me out of the girl one I wanted. I am thankful he made us keep him every time we moved. He has become a fourth child, he has been around longer than 2 of my kids. I am also really glad Kai stopped eating all my stuff, it made it easier to love him! I am thankful that he was so good with Daniel it made it harder to get rid of him. They have this special bond, it is so neat to watch. Kai watches over us when Beau is away, he sleeps in between the kids rooms and mine. I will be sad when he is gone, but he has been an awesome dog.

16- Make Up

Ok so some of you might think this post superficial. However, I love make up, I love the way I feel when I wear it. How it can transform your face and enhance what you already have going for you. I love playing with colors and it gives me a way to be creative on days when I can't do anything else artsy. So yes I love make up and I am thankful to have it!

15- Mary Kay

I am thankful for the Mary Kay opportunity. I love Mary Kay, the women I work with are amazing, everyone uplifts each other and cheers each other on. Even though I don't have enough time to do it full time, I do love doing it part time and knowing whenever I choose I can decide to go full time. It is a great feeling to know if I need money I just have to hold a party, make another person better than when I found her and improve how she feels about herself.

The company its self is so generous and always giving back, to the community and to the consultants. I am so glad a year and a half ago Tammy Brown, had enough faith in me to offer me the chance to be part of her team. I love it and I am a better person because of it.

She drives a Pink Cadillac and I will too!

14- My parents

I am thankful I had a mom who was always there when I got home from school, who came to all my basketball games and who made our house a shelter from the rest of the world. My dad who worked hard for our family and sacrificed for his kids. Who taught me how to drive in his dodge pick up, and always made me feel special. My parents raised me with a deep faith in God and I am thankful I get to pass my faith onto my children. They are awesome grandparents and I wish we all lived closer so we could see them more often, but I know we will eventually!

13- Siblings

13- Siblings- Growing up there were 10 of us, I was number 4 so there was always someone to play with, fight with, and talk to. Now that I have my own kids I am glad that they are close in age because they can play together and as they get older support one another.

12- Can I say good friends again?

12- Can I say good friends again? Thank you Mia Johansen, You are a lifesaver today. Nate and Emma are both home sick, Nate is recovering and Emma is spiking a fever as I type. And Mia is picking Daniel up this afternoon, because she is amazing like that. And if I can't say friends twice I will say I am thankful for Books, I plan on snuggling my sick kids and reading to them today.

11- Veterans

11- I am thankful for all veterans! My husband served in the Air Force, My father in Law in the Army, and I have too many friends who either served or husbands served in the military. So thank you to everyone I know that has, for your sacrifice!

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10 I am thankful for modern medicine. Nate has been sick with a fever.

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9- I am thankful for my friends. I have found some great girls here in Texas. And whether they know it or not, they keep me sane!

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8- I am thankful for my pantry full of food. That my children go to bed with full tummies.

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7- today I am thankful that I have the opportunity to get my teaching degree. It will allow us more health insurance and money to be able to afford the care Daniel will require in the future. I am sad I won't be able to be a SAHM, but I am glad I will have a job that I can be home when my kids are home.

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6- I am thankful I live in such a great country and pray it will remain great! I am also thankful I get to vote today!(late on the blog I know.)

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5- Today I am thankful for my Husband. We eloped at the old age of 18, I'm sure people thought we wouldn't make it but I knew I wanted to be with him forever after dating him for just a few months. He has put up with me for 11 years and I am so happy he still loves me!

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4- I am thankful for my hubbys job and the lifestyle it provides.

Perspective

This is just a personal rant. For a long time now I have had these thought floating in my head and I need them out, so here it goes. I follow an Autism blogger. She has a daughter who is just a year younger than Daniel, she is a very popular blogger, and has even met with the President. Now before I start I don't mean to offend, and I don't want to minimize anyone's situation, we are all fighting our own battles but sometimes I feel like I was handed a larger one. She blogs about all the things her girl struggles with and all the new achievements. I love reading it and can almost always relate to what she is going through. However lately I feel as though I always find myself thinking if he only had Autism it wouldn't be so hard, or if it was only FA, but he has both and together it is hard. Why does my boy have to struggle both physically and mentally? In a way Autism has sheltered him from the stares and comments of others so he has been oblivious about what others think of him. However he could talk to them and make friends easier if he wasn't Autistic. I keep thinking, this blogger needs to quit whinnying that her kid is Autistic, because at least that's all she is. Mine struggles with everything, physically, emotionally, and academically. I'm not trying to whine and I don't mean to complain I just feel like sometimes Daniel was given more than he should have to endure, I know he will come out stronger and an amazing person but it's hard to watch. And because the worst thing wrong is not autism, it's a life shortening disease, it makes it hard to read her blog. As his mother I want to protect him, to take away his pain, to understand how he feels, to change his condition, to relieve the heart aches, and to ease his worried mind, but I can't and it hurts. I am getting just a small glimpse of what our Heavenly Father must have felt watching his son suffer, and watching us struggle through life. He wants to bless us, he wants to help us, but sometimes he must let us struggle and hurt so we can become stronger, better, and painfully grow into what he wants us to be.

Number 3

3. Daniels best friend. Because my boy hasn't had a best friend since he started school. I am so thankful for the kindness he is shown by that boy. Because of him other boys accept Daniel and help him, and they all enjoy just hanging out and talking about comics, or watching cartoons.

Number two

Today I am thankful for my religion. It is what makes me who I am today and gives me strength.

Number One

I am Thankful for my Family. Both my kids and husband and my extended Family. I am blessed with a large family, since there are 10 kids in my family and 9 in Beau's family. I am thankful for every single one of them.

Staying Strong

You know when you look at that mom you see every week, or day, the one with the child who has special needs? And when you see her you always think, wow, she is amazing, she is so strong, she is so much better than me. I don't know how she does it. Well let me tell you a secret, we don't feel strong, we don't feel amazing, and we don't feel better than you. Most of the time we are tired, we are wondering how we have held on as long as we have, but mostly we know we have made it because we have help. We have people to lean on, and friends who care, and we have prayer. I just realized I am one of those women, I didn't see it before but now that I realize people are constantly watching me, I realized I am that woman, who people think is strong and amazing. We are only strong because if you aren't you wouldn't survive, we are strong for our children, to make sure we don't show them we are afraid. I act strong so Daniel doesn't know that every time he goes to school I pray they take care of him, and treat him with kindness. That I will see him at the end of the day smiling and happy. That when the phone rings and it's the school that it isn't the nurse telling me it's an emergency. I can relate to the mom in this video so much. This is what we are going through. Click the link and watch it. https://www.youtube.com/watch?v=dBKEz952RY4&feature=player_embedded Thursday we are doing a wheel chair fitting for Daniel. I am excited and sad all at the same time. I am however trying to stay positive, by focusing on how it will help Daniel. Instead of how he is losing his ability to walk and gets tired much faster. On another note, I have decided to get into extremely good shape so that I will be able to assist Daniel more even as he gets bigger. Which I guess means I'm getting both physically and emotionally stronger, which are both good things.

Realizations

To the girl who just parked in the handicap spot in front of the school and yelled at me when I showed you my tag to make sure you had one, because I am sick of parents parking there to drop there kids off who are perfectly fine and can walk. I apologized to you and felt bad when you did have one, until I watched you walk perfectly fine at a hurried pace into the building, leaving a guy in your passenger seat who i'M ASSUMING THE TAG WAS INTENDED FOR. I just wish you had stuck around long enough to see me carry my son to his walker which was behind your car because there was a curb on one side of my van and your car on the other. and I wish you had been there to hear him say ouch mom you're hurting my ribs, from me having to hold so tight because he can't help hold himself up. Because Quite frankly you are a rude ignorant witch(I wanted to call her something else) and I chose to leave before I had to see you again, I am hoping your passenger will make you feel like crap for what you did this morning. - a mom so sick of ignorant dip sticks Reasons why we need the spot, first Daniel needs access to the ramp, he can't take his walker up stairs or over curbs and grass is difficult as well. Second we need that extra space one one side to put his walker when he gets out. I don't use my handicap tag unless Daniel is with me. Ok I did use it when Nate had his broken leg, but I figured we needed it then. :) I am now super aware of others who are handicapped. I am also thankful at church people let us have the handicap bench, which we share with an older couple. The husband is in a wheel chair, they sit on one end and we sit on the other so Daniels walker and eventually wheelchair can be parked next to us without being in the way.

Over the last few weeks I have realized for the majority of my life, most of the decisions I make will all be based around Daniel and how they will affect him. Everything from where we live, jobs that beau will take, how we spend our money, jobs I can take, what we will do for vacation, how we will get there, where we sit in church, where we sit when we eat out,and so many more. I am also aware that now when ever we go any where people stare, so I can no longer pretend to be invisible, we have to talk to people so they move out of the way, and I also see how uncomfortable Daniel makes them as we walk by, they don't know how to react. That's ok, I understand.

Hypertrophic Cardiomyopathy

So Daniel went to the Cardiologist today and it was confirmed he has the heart condition associated with Friedreichs Ataxia. His Doctor said his is in a mild to moderate state and we have started him on medications to help manage it. Here is some information I found online the website is listed at the bottom of the page.

Hypertrophic cardiomyopathy (HCM) is a condition in which the heart muscle becomes thick. Often, only one part of the heart is thicker than the other parts. The thickening can make it harder for blood to leave the heart, forcing the heart to work harder to pump blood. It also can make it harder for the heart to relax and fill with blood. Causes, incidence, and risk factors Hypertrophic cardiomyopathy is a condition that is usually passed down through families (inherited). It is believed to be a result of several problems (defects) with the genes that control heart muscle growth. Younger people are likely to have a more severe form of hypertrophic cardiomyopathy. However, the condition is seen in people of all ages. Symptoms Some patients have no symptoms. They may not even realize they have the condition until it is found during a routine medical exam. The first symptom of hypertrophic cardiomyopathy among many young patients is sudden collapse and possible death. This can be caused by very abnormal heart rhythms (arrhythmias), or from the blockage of blood from the heart to the rest of the body. Common symptoms include: Chest pain Dizziness Fainting, especially during exercise Fatigue Light-headedness, especially with or after activity or exercise Sensation of feeling the heart beat (palpitations) Shortness of breath with activity or after lying down (or being asleep for a while) Signs and tests The health care provider will perform a physical exam and listen to the heart and lungs with a stethoscope. Signs may include: Abnormal heart sounds or a heart murmur. These sounds may change with different body positions. High blood pressure The pulse in your arms and neck will also be checked. The doctor may feel an abnormal heartbeat in the chest. Tests used to diagnose heart muscle thickness, problems with blood flow, or leaky heart valves (mitral valve regurgitation) may include: 24-hour Holter monitor (heart rhythm monitor) Cardiac catheterization Chest x-ray ECG Echocardiography (the most common test) to diagnose and follow the condition MRI of the heart Transesophageal echocardiogram (TEE) Blood tests may be done to rule out other possible diseases. Close family members of people who have been diagnosed with hypertrophic cardiomyopathy may be screened for the condition. Treatment If you have hypertrophic cardiomyopathy, always follow your doctor's advice about exercise and medical appointments. You may be advised to avoid strenuous exercise. If you have symptoms, you may need medication to help the heart contract and relax correctly. These may relieve chest pain or shortness of breath when exercising. Some medications used include beta-blockers and calcium channel blockers. Some people with arrhythmias may need treatment, such as: Medicines to treat the abnormal rhythm Blood thinners to reduce the risk of blood clots (if the arrhythmia is due to atrial fibrillation) A permanent pacemaker to control the heartbeat An implanted defibrillator that recognizes life-threatening heart rhythms and sends an electrical pulse to stop them. Sometimes a defibrillator is placed, even if the patient has not had an arrhythmia, but is at high risk for a deadly arrhythmia (for example, if the heart muscle is very sick or the patient has a relative who has died suddenly). When blood flow out of the heart is severely blocked, symptoms can become severe. An operation called surgical myectomy may be done. In some cases, patients may be given an injection of alcohol into the arteries that feed the thickened part of the heart (alcohol septal ablation). Patients who have this procedure often show significant improvement. If the heart's mitral valve is leaking, surgery may be done to repair or replace the valve. Expectations (prognosis) Some people with hypertrophic cardiomyopathy may not have symptoms and will have a normal lifespan. Others may get worse slowly or quickly. The condition may develop into dilated cardiomyopathy in some patients. People with hypertrophic cardiomyopathy are at higher risk for sudden death than the normal population. Sudden death can occur at a young age. Hypertrophic cardiomyopathy is a well-known cause of sudden death in athletes. Almost half of deaths in hypertrophic cardiomyopathy happen during or just after the patient has done some type of physical activity. Source http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001243/

My Faith

Today I am filled with so many emotions, however the strongest is a feeling of warmth and peace knowing that because of my faith and the Gospel of Jesus Christ our Family will be together forever no matter what happens to my child or how early he is taken from me. Heavenly Father has a plan for him and I cannot question that.

If you would like to learn more about what I believe go to www.mormon.org

The Answer

So after a very long time we have our answer. Daniel has been diagnosed with Friedreich's Ataxia. We are relieved to finally have an answer. You can read more about it here http://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedreichs_ataxia.htm I'm still researching it so I can't answer very many questions because what I know comes off these pages. Here is another site http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/7/viewAbstract Beau and I haven't talked about it because he had to go straight back to work, but we might consider participating in research and now have a cause to raise awareness about. I am also determined to help Daniel live the fullest life and give him every experience I can. Be sure and read how it was inherited, I can explain that more if you need, but the rest I'm still figuring out. One last thing, it will be so nice to walk into school this year and have some information to give the teachers so they know what it is.

Our Journey to the Answer

This post is super long so I understand if you never make it to the end.

It was 5 years ago when we were told Daniel wasn't where he should be, socially, and with his motor skills. However laws prevented teachers from telling what I should do in terms of getting help.They didn't even suggest I should talk to a doctor, nothing. A year went by with me thinking He is how he is and there is nothing I can do, the pediatrician said he would catch up, that every child is different( isn't that what we always hear, don't compare your child to others). Now he is first grade, grandmas are noticing the way he moves isn't normal, we didn't see it because it happened so gradually. He was even making progress with hand writing, pedaling his bike finally, and other things. I voiced my concerns to the doctor and they were brushed away as if they were nothing, another year goes by. I take a child development class and realize things are worse than I thought and not only is it a physical problem, my child shows an overwhelming amount of signs for Autism. How could he be almost 8 and diagnosed? I always thought Autism was when you child is nonverbal, I had never heard of the other types. Now I know I need to fight for him. 2nd grade starts and it is becoming very obvious there is something wrong, but no one listens.I ask for screenings, the school physiologist says he isn't autistic, I know she's wrong. A five min. observation isn't going to tell you all you need to know. Another year goes by, I switch doctors he gives me what I want a referral to specialists. 5 months go by waiting to get in. 5 precious months, waiting. The neurologist runs test for everything he can think of. After 12 hours of testing The Neuro-psychologist diagnoses him with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) It is in fact on the Autism Spectrum. That whole year we continued doing tests, and eventually ended up down in Salt Lake at Primary Children's at a Metabolic Geneticist. Everything keeps coming back normal. We move to Texas and another year has gone by..... We wait another 5 months to get into the Metabolic Geneticist here, everything is still coming back normal. All the while he his losing fine and gross motor skills. And there is nothing I can do about it, I can't stop it, teachers want answers from me and I don't have any to give. His physical therapist gets him a walker so he can walk. This year he lost his reflexes in his knees in a 3 month period, we replaced his bunk bed because he could climb up and down and refused to sleep on the bottom. He used to be able to make it around the house unassisted. He now uses his walker whenever he has to go anywhere. He can't pedal his bike, we never took off his training wheels. He can run and play like his bother and sister. People judge me because he watches T.V. and plays video games. But what else is a child supposed to do when he can't run and play? When he can't play with normal toys because if he sits on the floor he can't get up on his own. Sometimes it takes all his energy just to get dressed by himself. Next month another year will have passed. He is my sweet little boy who makes me laugh, has the sweetest spirit and a great sense of humor. He is a comic book encyclopedia, an expert on star wars, and many other topics. He has the memory of an elephant and you can't promise him things you aren't prepared to give/do, because he will remember and won't let you forget. I watch him struggle everyday with all the little things that you and I find simple and easy. I wish I could take his place, make things easy, or fix him, but I know I can't. God put him here in this body for a reason, it's not my fight to fight. He is being shaped into a wonderful, strong person. In 18 days I will get test results telling me why he is the way he is. I have been waiting for this answer for at least 3 years, and now knowing that it's coming, wonder if I am truly ready?

Nathan Broke His Arm

OK so a few weeks ago I was in the ER with my friend, her little boy fell and cracked his scull. I made the comment I was surprised Nathan hadn't broke anything yet. 3 days later Nathan and Emma were putting pillows on the trampoline to sleep outside on it. The enclosure wasn't zipped and Emma hit Nate through the hole. He fell and Broke his arm. Beau didn't think anything was wrong, we iced it and he went to sleep that night. Sunday it still hurt I took him home from church early, Beau still didn't want to pay for the Emergency room insisting there was nothing wrong, but Nate wasn't using his arm at all. Monday morning I took him to our pediatrician and she said sure enough she believed it was fractured and would need X-Rays. We then went and got X-Rays, and took them home on a disc. When I loaded it on the computer I could see the break and then had to wait 2 hours for the doctor to call me and tell me what I already knew. We then had to drive 30 min. down to the pediatric hospital to get a splint and a sling in the ER.

After 3 hours they took care of us and sent us home, telling us to call another doctor to get the cast in a few days. We went and did that today. He has this cast for the next 2 weeks and then will get a shorter water proof cast. He will have that one for 3 weeks and then we will take more X-Rays and make sure it's healed if it isn't we will keep it on longer. If it is he will then get a temporary cast for another couple of weeks. Moral of the story be glad you don't have kids who break things because I am sure this is not our last broken bone. It is so hard to keep him from climbing and now he can't swim for 2 weeks and ride his bike for more than a month. And to top it all off, probably won't be able to ride rides at 6 Flags if we go. We might just stay home instead of torturer him.

I think it's harder on me than him now that he has his real cast his arm doesn't hurt as much and he can move it a little more.

crafts

here are the links to what I have been doing!
http://www.froggy-flipflops.blogspot.com/2012/02/dress-for-e.html
http://www.froggy-flipflops.blogspot.com/2012/02/t-shirt-refashion.html
http://www.froggy-flipflops.blogspot.com/2012/02/messenger-bag-for-reverse-walker.html
http://www.froggy-flipflops.blogspot.com/2012/02/easiest-dress-i-ever-made.html

Daniel and genetics

Ok so our last visit to the genetics doctor went really well. Dr. Gibson spent 2.5 hours with us going over everything. Stuff from what the last doctor looked for to family history to what he was going to look for and why and then gave Daniel a complete physical. He seems like he knows what he is doing and I have heard great things about him. The last set of tests results have come back with one positive result for Fragile X, I had to go give blood to confirm, we will those results in about 3 weeks. I will keep everyone updated. I'm not sure what to think, a lot of it fits and some of it doesn't. All the information I have gathered I read by searching for it on the internet. And even though I'm not sure that's what it is, I do feel like we are one step closer to figuring out this puzzle! And I am relieved that I was the one who had to be poked and not him, he's been poked too many times.
He also has been using a reverse walker to get around school, church and when we go out places and it is helping so much! He loves it and he can go pretty fast now, plus when going down ramps he lifts his feet and rolls, which is scary for me, but fun for him. He is such a special soul, I can't believe I get to be his mom. Well I think that's about it for now!

A Little Update

So I have decided to finish school online and go to be an Elementary School teacher. I have trying to decide for years. I love little kids and if I had to work I would want to be able to only work while my kids are in school. I am excited to be starting school again, I have been feeling a bit lost these last few months. I start march 1st and I am really excited!