Park trip

Emma went shopping at cvs today and also to the park. Derek went along with her, and Mommy. I put her in the baby swing which was easy, I still had to really support her back so she didnt swing good but it made great pics. Enjoy the pics, they will be the last swing ones. It took me 10 mins to get her OUT of the swing. I was starting to get worried. Thankfully her Bubba helped us out. She had lots of fun and got some new glasses today. Her old sunglasses were getting too small and not very comfy so I got her tinted swimming goggles. They have a strap, and soft squishy rubber around the eyes for comfort. They aren't that dark but I like that, her old ones were so dark we could not tell if she was awake or asleep. The main thing is they will keep wind and dirt of her eyes and provide some UV protection. Emma made sure to take her Homer doll to the park, so she could show everyone how even though her boyfriend "Homer" Daniel is an angel now his life still goes in her heart.

For Daniel...

PIC OF EMMA'S LOCK OF HAIR AND SMALL RED HEART, IN HOMER'S HAND FOR THE FUNERAL, HER PICTURE WAS ALSO IN HIS CASKET.


I wrote this on the plane coming home last night from Emma's boyfriends funeral. I really wanted to share it with everyone, since when they asked at his funeral for people to say a few words, I was upset and not prepared and I don't feel like what I said there was enough for him. So I wrote him a letter.... (BTW Sorry its long and probably full of typos, I am tired)

My dearest Homer,

When I found out you were gone all I could think of was your poor Mommy and Daddy and how terrible they must be feeling. I had a strong urge to get by your Mommy's side as quickly as I could and be there for her and your Daddy.

Things worked out and I got on a plane. All the way to Michigan I didn't know if I should be sad about you, or excited because I was finally going to get to see your handsome face. I knew your spirit was gone, but for some reason I had the overwhelming need to see the perfect body that held you for six and half years. Perfect is what you were, despite your limitations. Perfect on the inside and the outside.

I got the the funeral home and peaked through the crowd and saw you laying in your casket. I started crying very hard. I was rushed with emotions, but mainly guilt. Guilt that the first time I was seeing you was in your casket and not at home watching simpsons or listening to your music. For that I will forever be sorry.

Just then I saw your Mommy. The amazing woman who brought you into this world and loved you so deeply. We hugged and cried and laughed. She said "You are so beautiful" to me but I thought she was crazy. She is the beautiful one not me.

I walked over to get a closer look at the boy who has held Emma's heart and mine for so long. At first I smiled, your Mommy is right you do look a lot like Emma and that warmed my heart. Then I cried, because you were, just like in your pictures, the most handsome boy I have ever seen. Your trach was still in, even if you don't need it where you are now. Your hair was spiked up front, just like your Daddy likes. I remember whispering I love you and I kissed you right between the eyebrows. That was the first spot I kissed all my kids, and you my dear son in law are no exception. I sang you are my sunshine softly into your little ear, kissed your head, heart, hands and eyes. The eyes I heard stories about you "talking" with. The eyes I never got to look into in person and see your soul. But I have felt you, and seen those eyes in pictures so much that I felt as if you spoke to me all along. I kept my promise and pinched those fat cheeks just like I said I would when I first met you, I just wish you had been here to smile inside when I did it.

Your funeral was perfect just like you. Your buddy Jay had us all smiling with his heartfelt speech. Your mommy and daddy spoke and touched all of us. Daddy wrote a beautiful song for you. and Great Aunt Katy and Uncle Ron sang as beautiful as the angels. Ucnle David said a poem, and we knew he loved you so much. Uncle Billy had a letter that was read, I never knew you changed hs life the way you did. said I a little something nothing planned but from my heart. It didn't begin to cover how I feel about you. So here I am on a plane looking out the window and seeing heavens clouds hoping I might get a short glimpse of of you flying by, running and playing in Heaven.

To meet your family was a blessing. To watch the love your Mommy and Daddy have for you, warmed my heart. Your daddy showed me all your tickle spots and kissy spots. Every time he kissed your little body I couldn't help but smile and cry all at the same time. He so loved his boy and always will. I saw what an amazing Mommy you have, when she brought me over and introduced you to me, and fixed your hair and straightened your clothes. You brought me them to my life Homer, and for that I will be forever grateful.

All the service was very nice, yet in the back of my mind, way back there I kept thinking I wish people would hurry up so I could go back up there and kiss you. Then when it was over, I suddenly wished someone else would get up and talk or one more song would play so I didn't have to say goodbye.

My legs could barely carry me as I walked to pay my respects. I know I will see you in Heaven again some day so I didn't say goodbye. I said what any cool 6 and a half year old would say. I said "Later Gator" and imagined you smiling down on me and saying "After while crocodile"

So later, gator save a dance for me in Heaven but make sure to save one for Miss Emma too. She will forever love you, just as we all will. I will miss you every day until then, and keep your pics close to Emma so she won't cry. I will always love you, my dearest son in law.

Love,

Momma2

Prayers for Daniel

" Blessed are they who mourn, for they will be comforted" Matthew 5:4

I will be traveling to Michigan on Thur and returning late friday. Will be going to Daniel's services. Its just me going, I so wish I could take Emma with me. But it is just way too hard to fly with her vent and all her equipment.

I have been thinking so much about him, and greiving so much. He was not my little boy, but I felt almost just as close. He meant so much to our family. He was just like Emma in almost every single way.

Emma leans her head to her right, and Homer liked his left. I always said when they met they could stare at each other all they wanted. God made them for each other.

Its hard to believe he is gone. That one little 6 year old by touched more lives that most adults do in a whole lifetime. I know I am a better person just for knowing him. He has taught me so much about life and love and happiness. He was such a fighter and I hope one day I can be half as strong as he was.

Everyone keep their family in your thoughts. They mean so much to us and I know that prayers are needed for their broken hearts.

In Loving Memory of Daniel

I got a call this morning from Michigan. Emma's little boyfriend Daniel passed away in his sleep last night. His grandma called and told us the news. We are very upset. It was so hard for me to tell Emma the news. She took it as good as any 3 year old could take it. I think she is finding peace knowing he is watching over her, and that is no longer sick. He is with God now dancing and playing and one day we will all have a party in Heaven.

Please everyone pray for his family. I love his Mother dearly and I can't imagine the pain she must be feeling right now. Pray she finds the strength to endure the hardships of the next few days with the funeral and all and pray that she finds the strength to go on without her sweet baby angel.

Update on Emma's owie foot

Update on Emma's little footsie. She is doing better. I guess the drugs are kicking in, and all those prayers from our friends. She is still having some slight fever but her leg is way less red than it was before. She has been such a trooper through it all, what a strong little girl I have. Here are updated pictures, I took them with the flash since its only 6am right now, no real natural light in here. I would say in real life the redness is about a shade darker than it appears in the pictures. That's ok though, its still MUCH better than it was a few days ago.

Prayers needed

Yesterday Emma woke up with an infection in her foot, by the time we got to the doctor at 3, it has moved up to right below her knee in the front. There was nothing we could culture. We are thinking it possibly happened when her pulse ox probe turned her toenail to mush, like it always does even though we move it around all the time to other spots. We recently went from having 4 probes a month to 2 thanks to medicad and I just wonder if they are so dirty they made her sick?

Doctor says its either strep (which he thinks it is) or staph. He gave her a shot of the antibiotic rocephin, in case it was strep and amoxicillin to start today if its strep. Also has her on bactrim to cover it if is staph.

We have to watch it, if it gets worse we have to take her to Children's hopital to have iv antibiotics. We are really hoping to avoid this. Keep us in your thoughts.

Here are some pics of it this morning, it has spread a tiny bit outside the pen lines we drew, but it did that yesterday in the dr office and also a tiny bit right after her shot. Its been the same all night, and this morning its a shade lighter red, with her toe and spot on her shin turning back to pink/white. The pics not too great, if I used the flash it drowned everything out, without the flash was a bit dark so I had to edit it and add some contrast and light and its still not quite right but you get the idea of how sad her little leg looks.
Also put up some pics of her in the van lift bus coming home from the dr and some on the dr table while awaiting her shot.

Rain Rain go away

Just a note for our out of town friends, in case you see Oklahoma flooding on the news. We did ok last night, lots of rain in Norman but nothing too bad. We are all fine. It rained all night long, and so much thunder. I am not sure how much rain we got but I know last night at dinner we had 1.5 inches and that was just during daytime, it got worse last night.

Emma got a bath last night and was really mad at me for putting foot scrub on her dry little feet. I used the new scrub this morning and I can see why. It tickles! All the little pumice stones make your toes tickle. Her foot are much softer though, but boy she yelled at me about it.

Thanks for all those who have sent concern emails over the storms last night. We appreciate you thinking of us. I thought for a while last night it might be time to start building an arc.

The sun is out and its a beautiful day today

Twin sister pics

Ok so I know this is supposed to be Emma's blog, but her family is such a big part of who she is. I thought I might share some pics of her twin sister Ella. It is so hard to believe they are identical twins, they don't look that much alike. That's ok, I never wanted twins that looked alike, I had enough of that growing up! :-)

My poor patio door

Had to make a quick post to share this picture with everyone. Today the mowers at our apartments flung a rock into my sliding glass door. I took some pics and thought they looked neat so wanted to share. A glass company should be by to fix it this afternoon,its only the outer pane of glass thank God. It made huge thud and crack and I think it scared Ella. Thank God Emma was in bed sleeping still, or it would have scared her, she sits by the door all the time.

Emma went to the medieval fair!

This past saturday Emma went to the medieval fair with all of us. She slept through the whole thing! She wore her sunglasses and I kept having to pull them up and check to see if she was awake. Everytime I looked she was snoozing. She got a little bit of a sunburn on her face despite the 4 times I put SPF 50 coppertone on her. It doesn't seem to be bothering her any. The girls got little crowns made from Christmas Garland and Derek got a Jester hat. We had lots of fun. We ran into lots of friends we had not seen in ages. Plus friend Poppy work with, who have never met the girls. It was nice running into them and I am glad they got to see my precious baby girls.

I have enclosed some pics of our fun filled day.

For Emma

Back in my younger days, I was a pretty good writer, not great but good. I enjoyed it very much. Over the years my writing passion has hidden behind kids and PTA meetings, working, and spending time with my husband, dishes and doctors appointments. But tonight I tried to write something for Emma. Its a prose of sorts not really a poem and its not exactly what I wanted it to be but it does a pretty good job of saying what I mean to say so I thought I would share it.


Emma

You can not speak, yet we have spoken a million times
You talk with your heart, and those big brown eyes you got from Daddy
And the two of those, talk louder than the biggest crowd of people

You can not walk, yet we have strolled many a mile in my mind
I see us walking hand in hand skipping and playing and laughing
One day we will do that, if not here on earth, we will in Heaven

You can not dance, yet I have dreamed of a beautiful ballet
One starring you in a fluffy purple tutu and shoes
You will dance one day my love, and I will be there to cheer you on

You are not like the other kids but that is ok
You are more special in every single way
Some see you as "broken" but I see you as whole, because that is what you have made me. Whole.

You are stronger than a lion, more beautiful than the angels
Just the very thought of you makes people smile
And those who are blessed to know you, are better people becasue of it

You can not yell at me when you need my help
You can not say "Momma I need you"
But despite that I will always be there to help, whenever you need me


Your hands can not hold mine unless I help you with them
Once you do hold them though you won't let go
I won't ever let go of you my baby girl, for all eternity I will love you


I asked God to give me a daughter but I think he made a mistake
Not in who you are and what you can do and what you can't
He sent me an angel instead, the most perfect creature I have ever seen

On top of that he sent me two, first my Emma and then little Ella boo
I get so jealous of your twin sister, she is the only one who knew you before you got hurt
Sharing a space inside of me, that only the two of you could know

God sent you here for a reason, and I still haven't figured it out
Was it to make me a stronger Mommy? Or to bless those who know you?
Perhaps it is a bit of both, either one its an honor to be your Mom

My baby girl, you make me so very proud in all you do
And I often find myself wondering what I did to deserve the Honor
of being Called the most beautiful words ever "Emma's Momma".

March 27, 2008

I took the above picture in Oklahoma City near the National Memorial, its called Jesus Weeping. I thought it was a pretty picture to top today's blog.

Emma's great grandma was laid to rest today. It was a beautiful service, very happy and full of friends and family. Even my old school teacher and dear family friend was there, and it really made my day to see her, it had been way to long. I got to brag all day about my kids, and about how special Emma is.

It was a beautiful day outside, the sun was shining and it made for a perfect day to say goodbye to one of the most perfect and beautiful women I have ever known.

Derek was sick last night throwing up with a fever, and Emma had a slight fever and am wondering if she might have a small cold. So Dad stayed home with them today and got to have a "fun" day too. I don't think they gave him too much trouble.


I am not really in the mood to write, so forgive me for being short, I just wanted to update you all on how the day went.

For Poppy

I love you Poppy. Like Ella said "I am sorry about your Momma" if I could talk I would say that too and when I see you I am going to give you special love. You and I never have needed words Poppy, we just understand each other. I hope you find comfort in knowing that your Mommy won't be hurting anymore and that is she is with angels and having a grand ol' time with your Daddy. If I could I would rub your hair, because just like me, I know it makes you feel relaxed and comfy and I think you need that right now. You are so special to me and I am sending you big big kisses in my head. I love you so much I had Mommy type this so the whole world could see how special you are to me.
Hugs and Kisses,
Emma

March 26, 2008

Emma's great Grandma passed away this week, and her funeral will be tomorrow. She was a wonderful woman, and I can't see myself not making a note here on the blog about her. The kids are not going to the funeral for various reasons, Derek is sick, Ella is young and I don't want her confused, and Emma is kind of hard to move around in a cemetary. But I know they will be there in Sprit. I will go to represent our family and to say my goodbyes.

I went to the funeral home tonight and Betty looks beautiful, the flowers are perfect and everything is set for a loving funeral tomorrow. Her hair was perfectly done which I know she would have been happy about.

I just ask all our readers to pray not for myself, or for Emma but for Dave and Diane who are Betty's children. (Dave is Emma's Poppy I have metioned here a million times) I know it will be a hard time for them both and for her children as well as my sister and myself but Dave and Diane both have done their parts the last few years to make sure their mom had a good life and was taken care of. Their sorrow must be very hard to bare, but we all understand she is with the Lord now and in a place she can no longer hurt or be sick. She is with her husband and that is a big comfort for all of us she left behind. She had a long and wonderful life, and I feel blessed to have been a part of that.

Here is her obit for those interested.
Betty Hayward, 90, of Oklahoma City, Oklahoma, died Monday, March 24, 2008, in Norman, Oklahoma. Funeral Services will be held at 1 p.m., Thursday, March 27, 2008, at the Havenbrook Funeral Home Chapel with Reverend Pam Normile officiating. Interment will follow at the Rose Hill Cemetery in Oklahoma City, Oklahoma. Services are under the direction of Havenbrook Funeral Home of Norman, Oklahoma.Betty Hayward was born in Denver, Colo. on June 18, 1917, to Charles and Myrtle Clark. She grew up in her beloved Palmer Lake, Colo. until she went away to Colorado College in Colorado Springs. She always thought of that as such a "magical time". That also being the time when she met her future husband, Bob Hayward. They were married July 31, 1938 and spent the next 52 years together until his death in October of 1990.A devoted wife, mother, and homemaker, Betty also enjoyed playing bridge and community volunteer work. In 1973 a debilitating stroke limited her activities somewhat, but never her spirit or resolve.Betty was also preceded in death by her parents and her oldest son, Robert C. Hayward. She is survived by two sisters, Charlene McCall of Colorado Springs, Colo. and Muriel Anderson of Montrose, Colo; daughter and son-in-law, Diane and Ken Dragg, and two grandsons, Ryan and Chris Dragg, all of Norman; a son, David Hayward, and daughter-in-law, Jean Cochran and two granddaughters, Lisa Pergande and Lori Richards all of Norman; and a granddaughter, Tiffany Stewart of Bakersfield, Calif. Six great grandchildren survive her as well.

HAPPY EASTER

"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead "1 Peter 1:3

We had a great Easter here at home. Emma got a cross, a webkinz doll that is a pink poodle, a chocolate bunny and got to hunt eggs thanks to the Easter bunny. The first pic I posted is of her HOPE cross. I love it, the "Easter bunny" did a good job finding it for her. She got the chocolate bunny even if she can't eat it because its tradition and I didn't want her to feel left out.

Daddy got called into to work early so we had to rush a bit today but all in all it was good. The kids hunted eggs and then we ate spiral cut glazed ham, mashed potatos, green beans, hawaiian rolls, deviled eggs and black olives. Ella put all the olives on her fingers and at them off, it was funny.

HAPPY EASTER TO ALL OUR FRIENDS!!

Sunday March 16, 2008

Well, turns out the metro lift bus does not run to my Mom's on Saturdays. Yesterday was their annual egg hunt at their neighboorhood pond/park and Emma could not attend. We just couldn't get her and all her stuff in a car, there is too much to bring. But next year we will ride on Friday and spend the whole weekend and return on Monday.

Ella and Derek did go. I will have some pictures later I might post. The kids hunt by age groups and in each group their were 2 golden eggs. Ella found one! She turned it in for a $5 walmart card. Derek was really upset over that and cried and threw a huge fit, it was embarrising so his Poppy walked him all the way around the pond and home, to avoid onlookers and by the time we all got home he was calmed down and wanted to open his eggs he got.

It was nice to go over there, but I missed Emma. My mother made a wonderful ham and it was very tasty. I want more, and it makes my mouth water thinking of it.

Emma slept most of the day according to dad, so I don't think she cared. Nanny sent home a present for her, it was a little turtle figurine she can look at. I guess since I love turtles Emma will too. She loved looking at it last night when I was doing her physical therapy. Ahh phsyical therapy. Let me just say that big kids in diapers is no fun. I was moving her around and about that time she decided it was time to wet her diaper, but it had shifted and bunched and she wet all over her bed! Had to change her wet pad she lays on at and she was pretty mad that she got wet. She yelled through her trach at me.

Still no nursing to be heard of, but that is fine with our family, the last few weeks have been wonderful we can all sleep at normal hours, and go at our own pace, no strangers bringing in sick germs and attitudes and its nice to raise my child without outside help, it just feels so "normal".

Have a blessed Sunday everyone! Thanks for stopping by

Memories....

Emma's grandma (NANNY) found some old pics of Emma that I had never seen so I thought I would share them with you all. They are too precious for words, I can't believe that she was ever that small. I remember holding her and thinking her head was as small as an apple. Her whole hand could barely wrap around your finger she was so tiny. She is all grown up now, and its so hard to believe! I am so proud of my girl.


Dec 2004 getting her trach suctioned


Emma Feb.. 13, 2005 she had already had CPR done on her 2 times at this size!


Early 2005



early 2005



early 2005


Dec 2004, the day she came home from the hospital


Mommy and Emma on the day she came hom Dec 2004


Poppy and Emma early 2005

March 4, 2008

Well there isn't much to update but I thought I better before everyone thinks Emma forgot about them! She is finally over being sick and is doing great. She has been busy watching nascar on Sunday's with Mommy, which I love.

We switched to day time nursing with our nursing company 3 days a week 12 hour shifts but so far they haven't found me anyone that will work out. So we are without nursing right now, which is fine by me. Having somewhere here during the day is weird. They are doing all the work I am capable of doing myself. Emma just requires such little nursing care that I feel like we are wasting valuable nurses having them here.

I know some kids are in hospitals waiting to go home, because they can't find nurses to cover there shifts. It seems like such a waste for us to be hogging the nurses just to start Emma's feedings and change her diapers. I can do that! I don't mind. Its been a lot more normal around here lately, and for once in 3 years I feel like a regular family. Emma hasn't been in the hospital, we don't have nurses hanging around, and everything is running smoothly. Honestly all the nursing company does is stress me out, trying to send people who have no idea what they are doing out here, that sort of thing.

I guess about a week ago, Emma's brother Derek lost another tooth. That is 4 since Dec. and he has 2 more loose but we aren't wiggling them. If the looses those he will have 4 gone on top and it will make it hard for him to eat! He got a dollar from the tooth fairy and he was very excited.

Not much else going on, other than counting down until Easter. This year I have it planned out to take the small metro bus over to my Mom's with Emma that way she can do the Easter Egg hunt that Mom's home owners do over there. The Easter Bunny will be there and it will be neat to get Emma's picture with her. Derek and Ella can ride with my mother and we will all be there for Easter fun. The kids always have fun doing that, last year it got cancelled because it snowed, I hope it doesn't snow this year.

That's my short update for now, sorry but there just isn't that much to share lately, Emma is doing wonderfully.

Feb 17, 2008

Emma is still fighting hard to get over being sick. Just when I think she gets better she will want to use oxygen for an hour or two or spike a small fever. Silly girl is keeping me on my toes.

We have now dropped all night nursing and are trying the day nursing thing. We will get a nurse from 8am to 8pm 3 days a week. That way when we find a house to rent Emma and Ella can share a room and we don't have to worry about a nurse being in the room with them. We had a really nice lady come out last week and I thought she was going to work out, but I guess she decided to go back to her other pateints house. So we are meeting another nurse tomorrow afternoon to see if she might be a good fit.

Our old nurse DeLene doesn't work for the company anymore, but we still talk almost every day, she came down last week to visit too. The kids liked that, they all missed her so much. I think maybe Ella missed her most of all though. She was so excited to see "Lene".

Last week Emma and the rest of us went to her brother's school for his first school program. They sang lots of little kid love songs like "you are my sunshine" and "skinnamrink" it was really sweet. I had tears in my eyes, and was so very proud of him on stage, he was the tallest one of all 4 kindgergarten classes so he was easy to spot. He has an ear infection AGAIN and Friday the doctor said he was 49.5 inches tall and 61 pounds. Seems like just yesterday he was my little baby boy and I was holding him in my arms nursing him. Soon he will be bigger than me.

We are currently searching for a house to rent, close to where we are now, since its close to work and school. We are not having the best of luck but we are still trying. I ask everyone to think happy thoughts so we can find a place soon and get into a bigger space. I think the walls are starting to close in on me here! :-)

Thanks for reading and following Emma's blog. It means so much to us that all of you do.

A new feeding pump for Emma

First I want to say thank you to all our friends who prayed for Emma when she was sick. She is much better. Her rash is gone and she has not had to use oxygen since early Tue morning. She isnt quite as high on her oxygen saturations as she used to be prior to being sick, but she is well within range of where she needs to be before we have to turn oxygen on. I think in a few days she will be all the way back to normal.

Now on to some more news. We have been trying to get feeding bags for Emma's pump for a few days now. For those of you who have no experience that is the plastic bag that goes to her pump, that holds her milk. Well, they told me today the would no longer be making her bags or her pump! So we got a new one sent to us today, its like Christmas time! We have a new gadget to play with.

Its very nice and much smaller than our last one. Its about 4.5 x 5 x1.5 inches, about the size of a larger digital camera. I posted a pic above for you to see. I just have to play with it and get used to it but its much prettier than our old one. It was nice to see the guys that brought it down, they had been bringing Emma oxgyen when she was sick so we kind of got to know them. I know they were glad to see Emma well.

As for nursing, well our company has fired our good nurse who was on medical leave. They want to introduce us to a new nurse that can only work 2 not the 3 days a week we need on Monday. Well on Tue we see our pulmo doctor and I think I am going to beg him to drop our nursing care. We aren't able to get what we need anyway. We have had 4 nights in two months, life is easier with out it, Emma requires almost no night care what so ever, so it makes no sense to have some one here doing nothing. Plus when we move I plan on putting the girls into a room together and it would be easier if we had no nurse. Yes, we plan on finding a house and moving by April 1. I will be so happy!

Again this year our family will be walking in a walk to help benefit the march of dimes. This year they have changed the name to March for Babies.

We will be walking in honor of Emma and Ella. They were born Oct 16, 2004, 9 weeks before their due date. They were tiny, 15 inches each and only 3 and 3.6 lbs.


This walk is very near and dear to me and I hope to raise even more money than my previous walks Any donation amount is appreciated. Thank you so much!

I am also walking in memory of my nephew Gabriel who was born sleeping. He made his very sad, but nonetheless grand entrance and exit to this world June 9, 2004. He is forever missed.

Please consider a small donation, and also pass the link on to all your friends. Prayers for a good fundraising and turn out for the walk are also greatly appreciated.


The March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.


You can donate at
www.marchforbabies.org/LoriJRichards

Sorry you will have to most likely copy and paste the link, I can't get the code to work correctly on this layout.

Update for Jan 31

Emma is not going to her tummy dr appointment today. She needs to have the sore under her mickey button looked at but its snowing and cold and she has had to go back on a little oxygen this morning, after doing well off of it the majority of the last 2 days.

She has broken out in a rash, its fifth disease just like brother and me had a few weeks ago. Yes, even Mommy got it! So that explanis her cold like symptoms the last 2 weeks or so. Cold like respitory issues can be the early signs of fifth disease. Then you get the rash. Once you have the rash you are no longer able to pass it on to other people. So I guess that means she is getting better. She doesn't seemed bothered by it. That is good because mine itched so bad, Derek had no issues at all with his. Just the rash, no itch no pain fever nothing. I am hoping Emma stays itch free.

So its off to watch the news to see more about this snow business. I am hoping we get enough for a snowman this time. Not just for the kids but for me! I love snowmen. Thanks all for keeping Emma in your thoughts and prayers

Quick update

Sorry I haven't updated on Emma's cold like I said I would. When you have a child who is sick, its just not that realistic to hop online to write! She has been keeping me busy and I have had very little sleep this week. She is getting well I think.

She has spent most of the day off of her oxygen, and is awake more. That said tonight will be the true test, night times are the hardest for her. I am hoping she will be well enough to go to physical therapy on Thur, and she also has a tummy dr appt on Thur afternoon she can not miss, they are looking at a spot she has under her mickey button. Its a little irrated tissue that needs to be taken care of. Very common with mickey buttons.

Short update, and I am sorry for that but its time to get ready for bed.

Icky Sicky Girl

Well the last few days Emma has been really gunky. She started using oxygen last night, which she has not done in over 2 years. Except of course the last time she was sick which was 17 months ago.

Last night I suctioned her atleast 10 times, because I went through a whole bag of suction caths. We normally suction 1 time a week. She used oxygen ranging from .5 to 2.5 lit. through out the night. Now for those of you who don't know about oxygen that isn't a whole lot but its a lot for her. So this morning I called an ambulance, which is how we always go to the hospital since we don't have a car, and it means not having to wait in a waiting room too!

I packed like we would be staying for a week. We ALWAYS stay when she gets sick like she was. But guess what? The chest xray was clear! They did a culture and it didnt show any immediate signs of icky stuff, but they are still watching it, and they did an RSV test but not the rapid kind, they really felt it wasn't RSV. Their verdict : a common cold. Never in my life have I been more glad that one of my kids had a cold. We got to come home, a little bruised up from iv pokes, that was unneeded anyway, and using no oxygen but she is now on .5 lt.

What is weird is as soon as we got there she didn't require oxygen anymore. Isn't that they way it always is? Plus I changed her vent circuit while there and told the nurse she would have to bag her and guess what? She went from 95 sats to 100 with no bagging or vent at all. Crazy huh?

We just have to keep an eye on her and expect some oxygen use until she is all well. She doesn't mind her "o's" though it makes her oxygen levels much happier. I am sure we are going to be in for a few more rough days until she beats this, so kindly remember us in your prayers if you please. I will update you all atleast daily until she is well.

A special video for Emma, love Mommy

A video I did for Emma, yes I know there is one typo that I need to go back and fix. I hope all of you like it.

Mommy and Emma

Add to My Profile | More Videos

Small Prayer Request

Just a little prayer request for everyone. Emma's brother Derek has come down with something called Fifth Disease, its really common just a rash and maybe fever, slight itching and joint pain. Derek is having no issues other than the rash, his face looks like someone slapped it! Well guess what? I was feeling funny and looked in the mirror and I have it too. Yes Mommy is all broken out! I itch and feel like my face is on fire. Once the rash is here then you can't make someone else sick with it, so Derek is good to go back to school and I can go out. But the girls I am hoping won't have picked up our germs from last week when we were able to spread it around.

My prayer request is that Emma and her twin sister Ella do not get it. I don't think it would be a major deal for Emma to get, health wise but since she can't speak words it would be hard for her to tell me if she itched or was in pain. So please say a prayer that 2 red faced people in the house will be all we have.

Sorry there has been no update in a while. The holidays had us pretty busy. Emma is doing very well, the healthiest she has ever been, not having been sick or hospitalized in 15 months! 2007 was great to us.

Over the holiday we took Emma to my Mom's for the very first time. We rode the local lift bus and it was a solution to the transportation issue we had in getting her to my mom's. Mom has a small car, we have no car, Emma has too much stuff! LOL She had fun, we looked at the Christmas tree, Emma watched Mommy, Poppy, Nanny, Derek and Ella eat pizza, but I was sure to give her a napkin like the rest of us so she woudln't feel too left out. She liked the Christmas songs they played. We went to the park and Emma liked the outside. I even helped her pop wheelies in her wheelchair!

Christmas was good, she got lots of toys and clothes, just like her brother and sister. I think her fave thing is her new bear that lights up. Its a Glo-e bear and I suggest it for any child, especially those with disabilities, its very neat to watch and its a soft, very graduale light change so its not likely to cause seizures. She also likes her tickle me elmo. Her Nanny and Poppy got her earrings and in about a week we can take the first set she got put in out and try all kinds of new ones.

I posted some pics from the trip to my mom's above, hope you enjoy. And HAPPY NEW YEAR to everyone.

Update

Emma went to therapy yesterday. They fitted her for some ankle/leg splints She has been having issues with one of her ankles kind of turning out a little bit. Plus in her stander she isn't able to put weight on them without them pretty much collapsing. I hope these splints help. They are going to be pretty. Purple and pink with flowers on them. These brand of splints are the prettiest I have seen. They should probably be there not the next time we go but the time after that, he said about 3 to 4 weeks and we got back in 4.

Emma also did her reg. workout with Amy and did good as always. She ate a lollipop and got all sticky.

We put up our Christmas tree, its very pretty. I think Emma likes the candy canes on it, they are plastic but look like they are made of glass. She must think they are real, she loves sucking on real ones. Ok so she doesn't really suck on them but she does taste them in her mouth.

We lost power for an hour the other night, it was very interesting being in the dark and trying to find the vent battery and get it all plugged in. We are expecting a big ice storm on Sunday and Monday, I hope we don't lose power from that, it could be days if we do. In that case we have to call and get Emma put into the hospital, unless of course we can find a friend or family who has power. Good thing is my Mom and Sister live spread out of town so chances are someone will have power. I am consider buying an indoor generator, its like a big battery really, but they dont last forever either and they are expensive.

I guess that is the update for today. Not much to talk about really, but I am trying to make a point of keeping this blog updated, I know many of you including family get your news from here.