What a busy year our family has had. I have made some personal reflection but am going to share Emma's year here, since after all this is HER blog!
January brought Fifth's disease and or first ER trip for Emma in a long time. She got over it quickly thankfully.
Feb. and March Emma got a new feeding pump, lost her nursing care (which has been such a blessing!) and worked on growing stronger and healthier. She did a great job! Emma lost her Great Grandma towards the end of March, a very tough time for our family.
April--The darkest month of the year, the one we would give anything to change. A terrible infection in Emma's leg seemed to be the big blow of the month, it was scary and we worried about her a lot. But fate dealt the darkest blow April 28, when Emma's boyfriend Daniel passed away. Words can not express the pain we felt, and still feel over his loss.
May--Emma lost 5 teeth and had fun playing water guns on Memorial day.
June and July-Another leg infection, what a scare. Fourth of July and playing at the park filled Emma's days.
August--Emma met Donna and Brian (Daniel's parents) for the first time when they came to visit for Emma's hip surgery. Her hip surgery went very well and she got big purple casts.
Sept --Went to a picnic at the church we would later attend, got her casts off, had to be patient with Mommy while she learned to pick up a STRAIGHT legged girl, ate ice cream sundaes for brother's birthday.
Oct--Turned 4! Honored Daniel on his birthday, started attending church regularly, dressed up as a snow princess on Halloween
Nov--Rode a trike at therapy! It was amazing and she did a great job. Got hip splints to help keep her legs nice and straight. Still going to church and loving it!
Dec--Rode a trike again, got a new wheelchair,took part in a candle lighting ceremony at church on Christmas, got lots of toys and clothes for presents.Sits in a chair all by herself with no help!
Looking back this year has been such a blessing. Despite the two leg infections she had a very healthy year, her best one yet. She is moving her head more, learning to balance herself more, is more vocal. She continues to amaze me every day in all she can do, and all she TRIES to do.
Looking forward to 2009 to make more happy memories with Emma and watch her continue to grow strong and surprise us all.
Wednesday, December 31, 2008
Posted by LJR at 5:10 PM
Monday, December 29, 2008
I haven't updated about Christmas yet, I guess I have been to worn out! Between cooking, doing gifts and then playing with al the gifts I have been tired.
It was a wonderful holiday. Started off by going to church on Christmas Eve, where we did a candle lighting ceremony and sang lots of beautiful songs. Then home to make a gingerbread house, which the kids then took the roof off of, it looked like a tornado hit it. Milk and cookies, magic reindeer hay put out and off to bed.
The kids woke up and did the whole Santa thing and opened gifts. We now offically have too many toys! Lots of great gifts this year. Emma got a beautiful necklace from Donna and Brian. Its a crystal heart with a purple butterfly in the middle, and they also sent her a Cowardly Lion statue from the Wizard of Oz, the lion is a thing for Emma. Full of courage and didn't even know it, just like Emma!
We got movies, clothes, candy, big giant my size barbies, blendie pens, you name it we now own it.
It was a very warm and happy holiday at our house, and I hope all our readers were as equally blessed!
Attached are a few photos, the candle one blurred with no flash, but its from our church candle lighting and I didn't want to intterupt things by using a flash.Derek and Ella got wax lips in part of their gift from Donna and Brian so we had to take silly pics, even with Emma wearing them!
Posted by LJR at 10:42 AM
Wednesday, December 24, 2008
Will blog details of our Christmas Eve tomorrow along with our Christmas day, right now I wish everyone would read this and remember that night long ago.
In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. (This was the first census that took place while Quirinius was governor of Syria.) And everyone went to his own town to register.
So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
"Glory to God in the highest, and on earth peace to men on whom his favor rests."
Posted by LJR at 11:38 PM
Tuesday, December 23, 2008
Yesterday was a good day. Emma went to physical therapy and we took lots of pictures of their decorations. The J.D. McCarty center does awesome Christmas decortations, I think anything that stands still long enough gets a bow or string of lights stuck on it. Emma had fun, and got to see all the pretty things.
They gave us a gift basket for Christmas that included dinner, a spiral ham which looks so good I can hardly wait to cook it, and presents for Emma Ella and Derek. We are so thankful and we love everyone there so much.
We are still waiting on Emma's footrest for her wheelchair, they told me it should be today, but the day is almost half over and no footrest yet. I hope we get it before tomorrow night, we really want to go to church. I may be taking her with only one footrest, I don't want to miss Christmas eve services.
Posted by LJR at 11:02 AM
Sunday, December 21, 2008
Our Tree and our doggie LOL
Tree light, I am playing with our close up on the camera
Derek said this looked cool
A kind of neat shot of our star
Our Homer ornament in Memory of Daniel
Derek made me this at school
Emma's best friend Emma Mae
Emma's other friend Caleb (Emma Mae's baby brother)
Posted by LJR at 9:52 AM
Saturday, December 20, 2008
We have recently found a blog about a very tiny little miracle named Kayleigh. She only weighted 1 lb and 1 oz when she was born back in June and she has had a really rough go at things. She is on a ventilator like Emma, except her's goes down her mouth and not a trach, she is in a NICU fighting for her life.
Could you all please say a pray for her and for all the other tiny little ones fighting to stay alive this Christmas season?
Click the picture it will take you to Kayleigh's blog.
Posted by LJR at 9:20 AM
Friday, December 19, 2008
Last night Emma sat in our recliner all by herself with no help! Her balance is getting better, and since her hip surgery she is actual able to sit up. She still needs the support of a chair, but I am hoping that one day maybe not in the very near future, but at some point she will sit unassisted in the middle of the floor with no help from a chair.
She sat that way for several mins last night, I did make a short video for you to see.
Emma sitting up in a chair
Posted by LJR at 1:19 PM
Wednesday, December 17, 2008
Here is a video of Emma and a quick tour of her room and some of her things. Not the very best quality video but you get the idea.
I plan on posting lots of videos in the days to come, we have so many Christmas traditions I would love to share with you all.
Emma and her room
Posted by LJR at 8:43 PM
Well, we do Santa at our house, and the kids are very excited, so they made their wishlist video. Ella has the croup and a very scratchy throat so she is hard to hear, and Derek just cracks me up. Emma is at the end, and she is mad I didn't curl her hair before filming, but she was getting ready for bed!
What we want for Christmas
Posted by LJR at 7:39 PM
Sunday, December 14, 2008
So we went to went to the inlaws last night to do Christmas early since Emma's uncle Adam is home from Iraq but has to return before Christmas. We had a nice time, and Emma liked sitting in her Grandmother's little red rocker.
We got so many gifts its hard to list. Each kid got a nice new outfit and a few toys and movies. I got a day spa gift certificate good for a haircut and style and pedicure! I got a make up set, which is nice because I don't normally wear make up at all but sometimes its nice. Emma is wearing the lipstick in some of the pictures. I thought it was cute to put it on her. Oh and we also got a new digital camera so you know what that means, more pics on my posts!
A family friend brougt her kids and Ella got to hold her daugter Auroa. Its the first baby Ella has ever held, and it was adorable. She talked to her and thought it was so funny when the baby started to rub her hair.
Its supposed to turn icy and cold and be a generally icky week. I am praying its not as bad as it was last year where we lost power for a week. No fun at all, and a bit scary when you have a child who needs power. Thankfully we were able to stay with family.
4 years ago yesterday Emma got her trach. I forgot about the "anniversary" until today. People ask me "Wow did you think 4 years later she would still have it?" and you know what, I have never thought about it. She has a trach because she needs it, and if she needs it forever so be it. I don't look in the future and wonder things like that, she is who she is in this moment and that is all fine with me.
Posted by LJR at 2:17 PM
Saturday, December 13, 2008
Made a video in memory of Daniel, our precious little love. His mom is missing him so much at Christmas, while this video is sad, I hope it serves as a reminder of the love he had for the world, and we had for him. Though memories can fade to grey our love for Daniel will always be in technicolor
Posted by LJR at 8:52 AM
Wednesday, December 10, 2008
I was going through pictures to put together a Christmas card, and found a bunch of the kids I loved, I have narrowed it down and ordered the cards. So while looking through I found a bunch of our dog Violet and it dawned on me, I don't think I have ever talked about her here. So I thought why not post some pics and talk about her a bit.
Violet was born March 11, 2006. She came to live with me right around mother's day that year, she is a combined birthday/mother's day gift for me. I don't know why she is MY dog, her and Ella are inseparable. She is an Australian Cattle dog. She is pretty smart, she can sit and shake hands and lay down on command. She barks at strangers, but is pretty much like a big cat here at home, she thinks she is a lap dog, even though she probably weights about 50 lbs.
The night I brought her home I thought being a cattle dog she might chase the kids. But Ella chased her! Around the coffee table a few times and has not stopped playing with her since, she is her buddy. Ella tries to ride on her like a horse, and pulls her ears and Violet just comes back for more! LOL
Anyway the kids want Santa to bring her a new pink water bowl and food bowl for Christmas, and think she needs a stocking. I told them we would see!
Above are the pics, and yes the one with me I do have red hair. It was back in April when I thought being red for a while would be fun. It was kind of too orange though.
Posted by LJR at 5:15 PM
Saturday, December 06, 2008
We had a very nice visit today with Grandpa and Grandma. I am so glad they came down from Kansas. We don't get to see them as often as I would like, between us not having transportation up there, and them working as hard as they do. So every visit with them is special.
I took Emma off her vent for a few mins and Grandma got to her hold with her new and improved legs. I don't think she even drooled on Grandma but she sure drooled on my arm when I picked her up. No fair. I put her back on her vent and then was going to let Grandpa hold her a little later but she started having issues breathing. Nothing terrible. Her oxygen sats just dropped down into the upper 80's for a few seconds like they have been when she was sick. So we had to lay her flat on her bed and she breathed much better, so Grandpa didn't get to hold his sweet pea, but that is ok he gave her lots of kisses. Sometimes Emma just breaths better laying down than sitting up.
Derek and Ella got to show Grandpa the game called "Jump all over Emma's bed since she is her wheelchair, and lets see how many times we can almost jump the blanket off the bed!" LOL they were little hyper kids, I swear. Show offs. They had fun though.
We did find out that Emma's other Aunt, Aunt Kayla (Daddy's step sister) is having a baby too! So now Emma will be getting 2 new cousins thanks to Aunt Kayla and Aunt Amanda. Apparently they already told Darren but he being the forgetful husband he can be, forgot to tell me! I am excited for her, she is a good girl ummm I mean woman sorry. I have known her since she was about 9 or 10, I can't hardly imagine her grown up and having a baby. She has had some rough times in her life, but is doing wonderfully now and I am so happy her life is beginning to turn around, and I know she is trying so hard, and am proud of her.
We put up our Christmas tree last night, its all blue and silver and a few white balls. Beautiful new silver star on top, it doesn't' light up though and I am not used to that. We have one non-blue, silver or what ornament. Its a homer Simpson one, and I got it in memory of Daniel. Its on the side closes to Emma's bed so she can see it at night when she lays down. I tucked a picture of Daniel in her stocking too, because I know that is all she wants for Christmas, for him to be back here. I wish that could be possible, I know his Mom and Dad are going to miss him so much this year.
So that's the update for now, the in laws told me today the appreciate me keeping the blog up, so they can get updates on all of us, so I guess that means I do have readers ha ha and that I should do my best to updated it more. I will try.
Still no new pics, still no memory stick for my camera, its has vansishes and I need to get a new one. We are considering getting a new camera all together for Christmas
Posted by LJR at 4:39 PM
Tuesday, December 02, 2008
Emma--She is doing ok, runny nose and icky eyes but nothing too bad. She keeps desatting (oxygen levels go down) to around 87-89 and then either comes back up on her own quickly or requires trach suctioning. 87-89 is not terribly low, but its unusual for her, her doctor says she needs to stay above 92 or use oxygen, But since she is staying around 98 or 99 most of the time I think she is ok. On a scale of 1-10 with 10 being super sick she is maybe a 2 or 3. I just worry because things can go south with her really quickly.
Ella--Had a fever all night last night but has felt much better today, she is up late and practicing tracing lines in her workbook, she is doing great with the lines, she will be tracing letters very soon.
Derek--went to school today but came home sounding horse. He went to Grandmother's tonight to go see his Uncle Adam who came in from Iraq a few hours earlier than expected today so we didn't get to meet him at the airport. He is still there at 9pm and better hurry up its past his bedtime!!
Darren and I are both pretty much well. I do fine for hours and then get a bad sinus headache. Medicine helps but takes a while to kick in.
Found out for sure that Grandpa and Grandma are coming to visit from KS on Saturday.Hope everyone is well by then, we should be. We started to decorate for Christmas today, and will put up the tree on Thur or Friday so Grandpa and Grandma will have a chance to see it. The kids can't wait much longer anyway. We got the snowman wreath out today, the nativity and decorated the table with candles and a new runner I got. The kids put sticker type things on the patio door, they are cute.
Posted by LJR at 9:05 PM