Monday, October 27, 2008

Guess what Emma did for the very time today? She rode on a tricycle at physical therapy. Its a special trike that she can be strapped into. She pushed a tiny tiny bit on pedals by herself and the rest of the time we pushed her and the pedals turned and since she was strapped to them, it worked her legs.

It was beautiful! She looked so "normal" like any kid getting on one for the first time, so grown up. I was so proud. Next time I will try to bring the camera (the one time I don't do it!) I think we may have the next Lance Armstrong on our hands, look out world!

Prayers please for Emma's Aunt Amanda (Daddy's sis) she just found out she is expecting, she lost a little boy to a neural tube defect right before Emma and Ella were born. We are thinking of her and wish the best for our latest little family member. Seems everyone is having babies lately, we are awaiting word on our friend Donna and how she is doing, so keep praying. She has a doctors visit today. I love babies and it sounds like we will have lots of baby showers to go to soon. Thankfully this Momma is done making babies. 3 is enough for us.

Sunday, October 26, 2008

Emma's first trip to church

Today Emma went to church for the very first time. Shocking I know. Most people figure our family already did the whole church thing. But in reality life got in the way or I got lazy or worried about germs or something and none of my kids have ever been until now. Its nice to feel that connection again, I really enjoyed myself is been too long since I have been to church too.

Ella went to her class they learned about Daniel praying faithfully to God. She brought a pic home of Daniel she colored with a green face, it was cute. A few other art things came home too. Derek said they learned about all kinds of stuff and he seemed pretty happy.

Emma went to big people church with me. She LOVED it. I sat her in my lap for most of it until she got too hot on my chest and then back in her chair she went. They have a great band, and Emma was rockin'. I helped her clap her hands and she stayed awake for all but about 10 mins of it. I was great.

Its Generations church. The one we all went to the little carnival at a while back. Its right up the street from my house. 5 mins maybe walking distance. Its a diffrent church than I am used to. I always went to a pretty strict Baptist church growing up. This one is more modern, they have a band and words to the songs on the screen. You don't have to hold your bible and flip pages the whole time, because they put verses up on the big tv screen too. The minister is a young family man and seems very down to earth and friendly.

Everyone was so nice to Emma. Trying to make her feel included in things. Many people said Hi and called her by name (she had a name tag) and ducked down to her wheelchair level to talk to her. Lots of comments on her curly hair and long eyelashes.

They have diffrent groups that meet through out the week. I am going to try to go to he women's group on Tue since Darren is off that night. They are also having a Halloween Fun Fest that we plan on going to on Friday.

So busy day, early start and a tired but very spirtually happy family today. Have a blessed Sunday everyone.

Saturday, October 25, 2008

Happy 7th birthday in Heaven Daniel

Well, today our special friend Homer is turning 7 years old in Heaven. I wanted to write a very special blog about it, but for some reason my mind is in a haze, and I can't the words to come out right. We all miss him so much. I beg of all our readers to please pray for his family today. I can't even imagine the unbearable sadness they are going to feel today, missing him so much.

I know that his real birthday was the day he got to Heaven. He was in a sense reborn there, with no health problems. He doesn't need his trach, or his mickey button. I like to think he is eating a big cake today and for the very first time he will be able to eat it with his mouth, something he could never do here. He is free from pain, and his body no longer holds him back. This should be a happy birthday, yet in my heart all I can thinking of is his family and how nothing right now can heal the pain they feel.

I still don't understand some times how God could call home such a sweet and precious boy when all the evil people of the world stay here. I often find myself questioning why he took him home. I remember "In the Lord, put your trust." - Psalms 11:1 and really try to trust in God's plan. Its hard sometimes. I must trust that in the grand scheme of it all God has a plan for their family. I think God's plan for little Daniel was to let him touch the hearts of many, to teach the world patience, love and compassion. He taught me that being different doesn't mean you are that "different" we all want to be loved in this world. He showed me just because he and Emma have Cerebral Palsy doesn't make it the end of the world. That little boy packed a lot of life in his few years here. He brought our families together. For that I will forever be grateful.

Happy Birthday Daniel, we miss you.

Wednesday, October 22, 2008

I have said it before. I am not a fancy writer but I do like to write things for people. With what would have been Daniel's 7th birthday coming up Saturday I wrote this for his mom. Her favorite flower is the gerber daisy. I picked red because no matter what time of year, you can always find red ones, Valentines or fall it matches everything. So, just like her son's love they never go away. Here goes, don't laugh!

The Story of the Red Gerber Daisy....

by me Lori R.

Somewhere among the gold paved roads and flowing rivers, not far past the tree of life a small boy stands looking down on earth. A beautiful red daisy clutched in his chubby hand, he pulls it close to his nose and inhales. A flood of memories fill his mind. His tiny feet in the sand at the beach, Daddy giving him nose rubs, Mom singing the sunshine song. A lifetime of memories consume his heart with happiness, as he peaks down below the clouds of Heaven to try to catch a glimpse of those he left behind.

A mother sits in her garden, a beautiful red daisy in her loving hands. She inhales and the memories fill her mind. The many nights she kept watch over her son, the quite moments he spent in her arms that felt like the most heart felt conversation she ever had. She lifts her eyes upwards towards the clouds up to Heaven hoping to catch a glimpse of that which she has lost.

A father sits listening to beautiful music, picking at the petals of a red daisy he holds in his hand. He takes a deep breath and is filled with memories. Fixing his son's hair just right, swinging at the park, tickling all those sweet little squishy spots. His lifts his eyes towards Heaven, past the clouds and squints to try to catch a glimpse of that which he has lost.

The boy climbs high up into the tree of life, right to the very tip top. There, are the most perfect red daises he ever laid his eyes on. He picks a few, just as he did before, kisses them, and tosses them in the air, watching them fall beneath the clouds. With a voice more beautiful than any of the angels he speaks. "For you Mommy and Daddy. Smell them and remember me, know that when its your time, when it is God's will that we reunite, I'll be here waiting, but until then dry your tears, and watch for the flowers I send and know that I love you"

Prayer Request

Emma and Donna her "Momma2"

A very special prayer request tonight. A while back I told you that Emma's boyfriend Daniel passed away. and as you all know from that time forward I have talked about his Mom Donna a lot. She is my very best friend, and came all the way down here to see Emma for her surgery. She is so loving and warm and very special to me.

Well guess what!? She just found out she is pregnant. They were just starting to try, even though its only been a few short months since he passed away, they needed to try because for medical reasons the sooner the better for her.

Daniel's 7th birthday would be this Saturday the 25th. I am asking that everyone please say a prayer for Donna, her hubby Brian and their new little one growing insider her tummy. I know Sat will be tough for them. I wish I could be with her that day, but atlas the miles that separate us are just too many. I am so excited for her over this new little one and also ask for prayers that her pregnancy and her delivery sometime late next spring early summer time go well. Daniel was hurt during his birthing process, so I know she is going to need all the prayers for strength when that time comes.

Anyway, we are excited and worried and still mourning for Daniel all at the same time, I can imagine those emotions are very powerful for her.

Thanks all!

Friday, October 17, 2008

Today was a busy day for Emma. A really nice man named Gary and our physical therapist Amy came to fit Emma for her leg braces. They put a temp. cast like thing on her and cut them, it will make the mold they need to get her all set up. It will keep her legs straight, will have a bar in the middle to keep her from turning them out, and also a pad on the knee area to help her stretch at the knee. She only has to wear it when she is in bed. It will be a few weeks before we have it.

After they left Emma went with Mommy and Ella to CVS and the Dollar store. Now, that seems like a minor thing to most but I am just now getting comfortable with taking her out into crowds. I take lots of hand cleaner with me and usually ask people not to touch all over her. What kind of person touches a stranger anyway!?

She used to catch a cold and it always sent her to the hospital. Now she seems to do better so I am easing up. When cold and flu hits we won't be leaving the house like that! I am bolting the door shut and spraying everyone with lysol before I let them in. HA HA. Ok seriously, I was so worried about her being healthy we didn't venture out much. Until a very wise and beautiful person told me "Get her out let her live life, trust me you would rather have a few years of happy life then a long life stuck at home" My best friend told me that, right after son passed away. She made me promise to get Emma out more to enjoy life. Its not like we had her locked in the house or anything, but we didn't do shopping much and avoided crowded houses at holidays that kind of thing. She wasn't a total shut in, but now I make a point of doing simple things like shop with her, I even took pics of her shopping a while back. Silly and fun stuff.

After a short nap it was tv watching time and book reading time, dinner and then ready for bed time. She is sleeping well now. Something I should be doing. So goodnight for now folks. Prayers going out to all of those we have promised to pray for, you know who you are! Goodnight.

Thursday, October 16, 2008

Happy Birthday Pictures!

I am so tired, Emma is almost fast asleep in her chair, and Ella is even getting worn down. What a day. Lunch at Taco Bell, because Ella changed her mind at the last minute. Then prsents and cake yummy. Ella got a doll bed for her dolls, a lucky ducks game, a backpack and a princess book. Emma got some very nice clothes, a Tootle book and doll, and some board books. I had to include a pic of one of the shirts Nanny got Emma, it says "Most likely to change the world" doesn' that just fit Emma perfectly? I smeared icing on Emma's face since she can't really eat her cake, I do that every year to get a picture.

Off to bed soon, they will be coming around 1030 tomorrow to fit Emma for some hip braces/splints. I am excited about that.

Enjoy the pics!

Happy Birthday Emma and Ella

First Photo shoot, they were about 3 months old, Emma left Ella right

I can't believe my babies are 4 years old. I guess I will have to start calling them my big girls. There have been so many times along the years, espeically with Emma that I didn't think they would make it to today. What a blessing to have them here and celebrating their 4th birthday. I am so thankful to God that he has blessed me with, and continues to bless me with, all this precious time with my girls. I am thankful they are both healthy, and happy and doing well.

We are having cupcakes and most likely going to McDonalds later, I will post pics. Our Nanny and Poppy are coming over and so is Mimi (Thats grandma, grandpa an Aunt Lisa for the layperson) and even Uncle Jon cousin Elizabeth and cousin Brandon! They all have presents for the girls. We aren't really doing a party, we are kind of partied out right now. Party or no party this is going to be a super special day for the girls, I will post some pics later.

Tuesday, October 14, 2008

More answers....

Again 2 that I can answer together.
Great questions! Please know that ANY question is always welcome. I don' want the tone of this to seem like I am defensive in any way. I get questions like this a lot, and I am answering them in a more matter of fact kind of way than anything else. This will be a long one folks, get comfy.
I love that you are doing this. ((HUGS)) Why did you feel getting a Vent was the best option for Emma? I ask because we were not encouraged to do that for our son. Having "met" Emma online, it doesn't seem as scary as it did when we first heard about vents.

I come across your page from my friend's blog. Do u think there wil come a time where you need to put Emma into a nursing home where she can be better cared 4? Why does she seem to be bad compared to most people with CP? Many can walk and talk and have jobs and families. Why does she have a tube in her neck and a vent? Aren't u unfairly keeping her alive with artifical means? Is she even aware of things or is she just a veggie?


I will do the second question first, as it will help explain the first one a little too.

I am sure when I am 90 years old or something and can no longer care for Emma on my own or with the help of my husband then a nursing home might be an option. We have always said if we are physically able then we will do it, becasue she is our child and if we didn't want the responsibility of parenting we would have never had children. Just because she has extra things to do doesn't mean it doesn't fall under the category of parenting. They do have a wonderful children's center about 30 mins from here, that I have heard great things about, but right now that is just not an option for us, we like to keep her with her family where in my opinion she belongs.

Why does she seem so bad compared to other people with CP? To me she doesn't. I know lots of people with severe CP just as bad if not worse than Emma. But you are right some very lucky people have it mildy. The way CP effects you can depend on lots of things, one being how the injury happened, and how severe it was. Emma went with very little to no oxygen for atleast 3 hours in the womb, that is how long it took me to get my "emergency" c-section when the found she was in distress (Yes, we did try a lawsuit, and no it never made it to court or settlement, long story I won't get into in this already long post)

She has the trach because the muscles that help her swallow do not work, so she fills up with secretions in her mouth that block her airway. The tube bipasses the mouth so she can breath. She has the vent because on occasion she stops breathing on her own (more on that in a min)

I don't feel we are unfairly keeping her alive at all. What would be unfair is to not help her. I had children to care for them, and do everything in my power to make their lives here on earth a happy, safe time. That is what I feel like I am doing. Emma can breath on her own, she can breath on her own for days, weeks, and even months at a time. She just forgets on occasion and the vent is there to help her for that. She is on it 24/7 because those spells are unpredictable, they could happen after she breaths on her own for 10 seconds or 10 weeks, just can't pinpoint when it will happen. To not give her the vent, that would be like saying an adult shouldn't use CPAP for sleep apnea at night or give an asthma patient an inhaler. It is not our place to give up on her life, its my place to help her fight. Only God can decide when she has had enough. Its just my job between now and that time to provide her with the best life I can.

No, she is not a vegetable. She has brain function. She is aware of her surrondings and what is being said to her. She just can't talk or walk or move much at this point because the portion of her brain that was damaged is what effects her muscles that make her walk and talk. The reason for her apnea is still not know as her brain stem shows up as perfect on all the scans. She might not be able to communicate with actual words, but she talks to us with squeeky piegon sounds through her trach, she cries when she is in pain, she makes cooing noises when you tickle her cheeks, she likes to watch tv and play barbies with her sister and will scream as loud as she can and cry if you move the picture of her angel boyfriend she likes to stare at.

Why did we think the vent was the best option for her?

Well to tell you the truth, at first we faught the vent. So much that we were denied a stay at a local hospital because we would not follow their recommendations of putting her on one. She would stop breathing and we would have to rescue breath for her. She died 2 times and had to have CPR for full arrest. The reason we faught it was it seemed like a death sentence, if we gave in on the vent it just seemed so final that she would always be on it, and a whole bunch of other emotions involved I can't really try to explain right now. But the doctors kept pushing to put her on one, very unsual since many doctors tell you to let go. But they saw she had brain function and a quality of life that a lot of disabled kids aren't lucky enough to have, and they kept suggesting it to fix what was wrong with her. She is a great canidate for the home vent program because she has great lungs, no changes need to be made to the vent on a regular basis and she uses little (NONE) oxygen and that doesn't change. Finally No more trips to the hospital every other week, no more CPR. No more fear if her next breath would be her last. I have no idea why we faught it for so long, I feel stupid for doing that now. Its just another machine, one more thing to lug around, but it is also her lifesaver.

Ok so there are your anwers, thank you so much for asking them. Got more? Post them, I love having something to write about, and I love educating not only those with the questions but all our readers. Thank you!!!

Emma playing with her sis

Emma making a really mad face and yelling because her Momma2 (Donna) gave her loud kisses and she didn't like it.

Monday, October 13, 2008

Answers to a few questions asked....

OK so we got these questions I thought I would answer.

Why is the roof of her mouth so thick and why is so chubby? If she's in therapy shouldn't see be losing weight?

Why is her face puffy? Does she have issues with her circulation?

Those kind of go hand in hand so I will answer them together.

Emma's face is chubby and puffy because her muscle tone is not like it should be in her face, her muscles just don't work they are super tight! So it makes her face look fat. As for being Chubby she actually isn't chubby at all except in her face where her muscles do not work. She only weights 30 lbs, which at age 4 puts her in the 10th percentile for weight, meaning out of 100 kids her exact age 90 weight more than her. Her twin sister has a good 7 lbs on her but somehow still looks like the "little twin. See the pics of Emma's little legs after her casts are off? They are nothing but skin and bones. She is on a limited diet through her mickey button of only 720 calories a day which is very low compared to the other kids her age, they do that because when she was younger she put on a bunch of weight all at once, and now they want to regulate how much she puts on so it doesn't effect her breathing, its not her total weight that is an issue, but how fast she puts it on.

The roof of her mouth being thick is very common with cerebral palsy patients. While I have noticed it being like that, I have never asked why, mainly because all my friends with CP kids all have the same thing, and I figured if it was a problem a doctor would have mentioned it. I looked it up online and all I can find is that the soft palate can be effected by the issues she is having with the muscles in her face being so tight. I also know that one of the medications she is on (phenobarbital) makes her gums swell, so that just adds to it.

Great questions so far! We love questions, so make sure you keep asking them, I will be glad to address them. Happy Monday everyone

Sunday, October 12, 2008

Emma is who God made her

I think I have touched on this before here, but wanted to write again. I have received some emails and comments on other websites regarding how parents of disabled children have to undergo the stages of grief for their "loss". I wanted to give my opinion on that.

First and most importantly, we have had no loss. Emma is who God made her. Sure I might have wished for a healthy child running around with her twin sister, but I don't grieve because she isn't. I think grieving over her disability and who she is, would be like grieving over her having brown hair instead of blond. Her medical issues are a huge part of who she is, and I honestly can't imagine her being any other Emma than the one she is now.

From the very beginning, I have been able to accept her for all she is, and also for what she isn't. I don't look at her and think of her like strangers might. They see what she isn't. I see what she is. She is perfect in my eyes. Sure I wish she didn't have to go through the type of life she has had to, I wish she didn't have to endure the things she has had to endure, the pain the heartaches. But doesn't everyone wish that for their children, even the healthy ones? You wish their first love didn't break their heart, or that they hadn't broken their arm in a tree climbing accident, or that they didn't get the chicken pox at Christmas time. But its not our choice on how life is dealt to us, its God's and the only thing we can do is accept it and enjoy it while it lasts and look forward to the perfectness of Heaven.

That being said, sure we do therapy, and we have surgery and we take medicines. Accepting things doesn't mean you give up trying to improve quality of life and help them be the best they can be.

So no, I do not grieve, I do not mourn the loss of a "perfect" child, because in my eyes she is perfect just the way God made her. I hope one day that everyone can understand that, and I pray that parents with other children with special needs will be able to see things like I do. Its much more peaceful to accept than to fight it.

Blog looks different AGAIN!!!!

Yes, I changed the layout of the blog again! I was looking for away to share pictures of Emma without having so many go down the right side of the page, and I don't like slideshows, so I came up with this simple header instead. I wanted to simplify the page and make it easier to read, but not loose those sweet pics! I did add music, by request of a reader. I will change the songs from time to time, right now they are songs that are Emma's favorites or ones that remind me of her. I hope you enjoy them.

I want to thank everyone for checking in on us, we have made some very wonderful friendships from this blog. Those frienships we will treasure for a lifetime, thank you.

Friday, October 10, 2008

Got questions?

Have you ever wondered something about Emma but were to afraid of how to approach asking? Now is your chance! Ask away, and I will answer them all in a new blog. You can ask anything at all, and know that nothing offends us. You can even sign it anonymous if you would like to.

I really hope to get some questions. I know that Emma and all her medical needs and such can be a bit confusing and there must be some questions out there. I have seen children myself and wondered how to approach their parents with questions. Some parents are very sensitive to questions and people looking at their children. I welcome it. I would rather educate people who have 10000 questions than to let people stare and wonder "whats wrong with that girl" I always welcome the chance to educate others and show off my pretty girl.

So now is your chance, ask away. It can be something simple like how much did she weigh when she was born to Why did you feel getting a vent was the best option for her? Anything goes. I will leave this up for about a week and then answer.

Friday, October 03, 2008

New pets

Just wanted to introduce you to our family's new pets. Lucy and Ethel. They are praying mantids. Yes, a praying mantis eats other bugs, and yes we have been hunting them bugs. Luckily our apartment's big green trash can provides more than enough flies, and there are tons of moths and butterflies around not to mention beatles and the occasional spider outside.

We have had them about a week or two. They are nice to watch. Ethel is a little on the mean side and likes to try to flap her wings at me or escape when I toss in her food. Lucy likes to hang from her stick in her cage.

Wednesday, October 01, 2008

No new wheels yet...

Well her wheelchair isn't ready yet. It is physically ready and waiting to be sent home but there were some redtape issues and some things need to get approved before it can go out, just a short while I hope.

Emma's therapist came to the house today to show me some excersises and positioning I should do with her. We are going to order her a brace if the doctor agrees, because her hips are starting to relax a bit too much and not stay quite as straight as they were right after the casts come off. Its not a setback, they are still a million times better than there were. Its just a little more help to get those hips to be the best they can be.

Emma is going out shopping with me tomorrow and hopefully we are meeting her Aunt Lisa aka Mimi for lunch too. We have to go to the pet store and get 2 critter keepers. We have 2 praying mantis that need bigger cages, we named them Lucy and Ethel. They are fun to watch and are doing well since we captured them about a week or so ago.

Check back soon, more pics to come, I plan on taking a bunch on our shopping trip.

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