Update Dec. 21, 2006

Emma went to therapy today. She well. It was nice for her to get to see Amy before Christmas. Emma got to see all the decorations out at the JD McCarty center again, she really liked that. I think she likes all the Christmas trees the best or the big Santa Claus out front.

We also got the base to her carseat delievered today. Actual its more than a car seat, its a "positioning system". So with this base it turns it into a chair with wheels she can sit in, inside the house. I haven't put her in it yet, want to wait until either the nurse is here or Dad is here to help me the first time, have to figure where to put her vent and what not. It will probably go on the new cart she has that holds her things.

Merry Christmas everyone. Please try to check back often, I plan on posting a few more times before Christmas since brother is out of school and we will be up to a lot with Emma.

Thanks!!!!!

Therapy today

Emma did pretty good today at therapy. Her Nanny and Poppy came and took lots of pictures, including pictures of her chair that Mommy decorated (you cant tell but the lights on her chair were lit up!) She had a spell when she wanted to use oxygen for a while but about half way through therapy decided enough was enough with the oxygen and started to breath better. Nothing to worry about, she is acting very healthy.

Amy think the botox worked great, she was very impressed with the way Emma's legs and hips were working. So that is a load off, I wasnt sure if it had been a success or not, but Amy's input is greatly appreciated and respected.

I am posting a slide show with music of the pictures we took today. I hope you like them. Thanks to Nanny and Poppy for taking them! I really think her Poppy was happy to get out there finally and see how great the center is and how great Emma does. Nanny was glad to have a repeat visit out there.

God Bless you all, I will have more updates very soon.

Special Message for Emma's Therapist Amy

Emma wants to put out a special message for her physical therapist Amy! CONGRATULATIONS ON YOUR ENGAGEMENT!!! Amy will be married June 2 if all goes as planned. Her ring is so pretty and Emma sure was eyeing the sparkles it made. Congratulations Amy, you deserve much happiness.

Somethning new to update!

Sorry I havent updated in so long, things have been kind of busy with the holidays. But guess what??? Emma has learned something new! When she is sitting/laying on the couch she has started to lift her head up and look around! She can get her head up about 2 inches or so off the couch. She loves being down at Ella's level and near the tv. She is a sweetie. I am so happy that she is working her head so well!

She has been such a good girl this year I bet she will get so many presents from Santa. We have missed PT due to a few things the last 4 weeks or so but go back to see Amy on Thur. Emma has missed her so much.

So far so good

Emma is still pain free and happy over her botox! I have not noticed any major change yet but havent done her streching yet today, so we will see in a while what is going on with her. I honestly dont know why some people make sure a big deal about botox. Emma has had no pain, no issues, no crying at all. I guess it is just diffrent for everyone.

Ella is coming home today from her Nanny's. She calls Nanny "Jean" and she says "football" she fed some goats the other day and called them "Puppy!" she thinks anything furry is a dog. Emma is excited to get her sister home.

Botox

Emma did pretty today with her botox. They started an iv to give her the sleepy medicine before hand, and they had told me the nasal drug would work. But they tried the iv and missed in her hand and it swelled up. Then tried her foot and got a good vein. She slept good and woke up with a few small holes poked him her back from the needles but other than that seems pretty normal. She is sleeping now, and is still a little loopie from her medicine. We arent really supposed to do any heavy stretching today but in a few days hope to see good results! WAY TO GO EMMA!! I was so proud of her today

More shots!!???

Botox time. Tomorrow morning Emma will get her first round in her abductors and her hamstrings. I pray all goes well. She isnt very nervous but Mommy sure is. I really hope we see the results we are praying for. She really needs it to work so we can get her hips in and and get her weight bearing and get her to walk eventually with any luck! They will do it on her arms later. Please think of Emma tomorrow. I will update when we get home.

Flu shot time

Emma, Ella and Derek all got checkups and flu shots yesterday. Emma and Ella also got the Hep A shots. They all did wonderfully only crying for a few seconds, except Emma who didn't cry at all. She is my brave girl.

Here is the info on how big all 3 kids are in case you are wondering.

Derek is 48 lbs and 46 1/2 inches tall
Emma is 28 lbs and 32 inches tall
Ella is 23 lbs and 36 inches tall

The doctor said all looks good for Emma. Gave her a new cream to try on her face called Hylira, not sure if we are going to have it covered by insurance but they think that it is.

Emma also went to phyiscal therapy yesterday. They gave her new dinasplints for her legs. We are hoping that after next weeks botox shots she will really respond well to the splint use. She does ok with it now but botox is sure to help.

Thats all the update for now. Love to everyone

You give me fever....

Emma had a fever last night of 102. Poor kiddo. She isnt acting all that sick anymore but apparently she still is. Our night nurse woke me up and I gave her something for it and she went back to sleep and cooled down.

I hope she gets well soon. They are going to attempt to give all the kids flu shots on the 9th IF the shots are in and if Emma is running a fever they won't give her hers.

The rash on her face she has had for months is looking better. I have been putting lots and lots of oil of olay on it. I am almost 100% its eczema. I will ask the doctor about it on the 9th.

Thanks for checking our blog, I will update again soon

Icky Sicky Germs

Emma missed Physical Therapy today. She has the sick germ we have all been fighting with for the last two weeks or so. We have all had colds. Ella and Emma both had fever this morning. So far Emma is only a bit more gunky nothing too bad and has the fever. She has only needed oxygen for a few mins here and there and not any in the last 2 days. I am hoping she doesnt end up sicker and have to go to the hospital. I am sure she will be fine though.

Halloween went well. The kids got lots of candy! They want it for breakfast, lunch and dinner and I am always hiding the box. Derek was superman. Ella was a pretty devil and Emma went as an angel. We went out to about 2 blocks and ended up coming home becasue it was so cold. Emma slept though the whole thing! We didnt want to stay out too long since the girls were feeling icky and we all had runny noses!

That is the quick update for now, I will keep you up to date on how we are all feeling.

Party Pics

I posted a small slide show at the top of the blog so show you pictures from the big birthday party on Oct 7th that Emma, Ella, and Derek had. I hope you like it!

Happy B-day

Happy Birthday Emma and Ella!!! You turn 2 today!!

A big update

Lots to share, as I havent written in ages. First and foremost I should let everyone know that on Nov 17th Emma will be getting botox done in her hip area and possibly her hamstring area. So keep her in your prayers and I will of course let everyone know how it goes. Also Emma had her birthday party last weekend! Yoopie! She got lots of presents and I will post some pics here in just a min. She has her 2 year old checkup on the 23rd of Oct. She will be getting her shots. Poor kid. She is doing great. I will update a little more when I get a chance. Its dinner time

Went to lung doc today

Emma went to see Dr Royall today, for follow up from when she was sick in August. He said she looks ok on the chest xray. He said her last blood work showed that her Carbon Dix. levels were too low so he changed her vent settings some. It used to breath for her every 24 times a min and now its only 22 times. Its hot at our house, our air conditioner is broken again. It should be fixed soon. Emma's Nanny is coming over with her great uncle Jerry and great Aunt Linda. They are visiting from San Antonio Texas. They will be here any min. I will update later tonight or tomorrow how their visit went. Just wanted to post a quick something about seeing the doctor.

New movie

I have a lot of new pictures that my mom took at therapy on Thur, so I put on a new movie! I hope everyone likes it.

Botox!! Not just for looking younger.

Here is a nice pic of Emma and Mommy at therapy yesterday. I am going to see about making her video with a few new pictures in it so check back and play it soon! We went to therapy yesterday and it went well. We went to see Dr Wright today. He is weaning her off her Klonopin since its not helping her muscles much and it is making her hair fall out. He wants to do botox in her hips and possibly her hamstring areas, and also another medicine that is injected into the nerve in her biceps for her arms. The botox for her hips and possibly other places will be set up to be done soon but it can take 4-6 weeks to get in for an appointment to do it. They will do it with help of xray and it will involve sticking a needle in her back, touching her bone with it, going just under the bone and injecting the botox. Hopefully it will help us get her legs out straight. He will be giving her medicine to sedate her a little, through her nose since she is such a hard stick for an iv. It sounds really painful but we really think botox is the best choice for her to gain some use of those muscles. I will update when I know more about the date and stuff. She will be sore for a few days after, and will have to have it redone every 3 months or so. I am trying not to get my hopes up and expect a "miracle" of sorts with the shots but they sound very promising. Thanks for checking on Emma, I will update again as soon as I get more info!

Bragging about Emma's nurse

I have bragged on here about Emma's PT now its time to brag about our nurse DeLene. She takes such good care of Emma. We have had some trouble with getting the nurses we need and we are down to just DeLene 3 nights a week and are out of luck for nurses the rest of the week. DeLene was the first nurse ever to come to our house, she came July 5, 2005. Has been here come rain or shine, snow or sleet. Emma loves her so much. She is a great nurse and I had to share her with everyone. We are so lucky to have her. God Bless DeLene!!!!

We found out a few days ago that Emma's Uncle Adam (Daddy's brother) will be getting married on Oct. 8th. Emma will be getting a new Aunt. Welcome to the family Aunt Summer! We haven't met her yet but I am sure she is nice. Not sure if we will all be going to the wedding or not, it just depends on if we can find someone with a van or big car to pick all of us up and take Emma's equipment.
Emma has a few appointments coming up. I will make sure to keep you all updated. She goes to PT on Thursday, her rehabilitation doctor on Friday, to talk about her medicine and possibly the botox injections.I also have to talk to him because her Klonopin is making her hair fall out. A lot of hair has been lost. Its a normal side effect of the medicine but I don't like it! She goes next Tue for an xray and follow up at her lung doctor. I am sure her xray will look good, she is doing much better.
Brother Derek's ears are better today, but he said he still doesn't feel to good. He went to school and did "nothing" all day. I asked what he did today "nothing" and if they sang a song "no we did nothing!" Wow what a fun school. Ha Ha

Mommy had to take someone to the hospital last night at 4 am and guess what? It was not Emma. It was Derek. He has been fighting a cold for about a week and went to the doctor on Wed. and all checked out ok. But last night he could not sleep and he said his ears hurt. So we went to the ER and he has a double ear infection. I am very tired, Dad is very tired, and Derek is just plain worn out. I have to go pick up his antibiotics soon. Everyone please pray for him, he is in a lot of pain. He is never sick and he is very tough so its pretty bad when he is sick. Thanks.
Since this is Emmas blog I guess I can also update you on her. She is doing great. She and Ella both got great rests last night. They are up playing this morning. Last time I looked Ella had dolls all over Emma and was making them "talk". Girls are so cute.

Emma loves Amy her physical therapist. She did very good at therapy today. I am so glad that we have Amy and I know we are lucky to have found such a great therapist. Emma responds well to Amy. Therapy went good we did the same old things, positioned her and stretched her. Emma had to go out in the rain today, but we are lucky it stopped raining right as we loaded up to go to therapy. I think Emma is starting to get excited about her birthday party which will be on Oct 7 , or atleast Mommy is! I cant wait to watch my girl have a party, last year we just had a small little get together at home. I am excited to see what Emma thinks about all the party things. I dont know if I have touched on this or not but Emma has only had 1 seizure in the last month, and her shaking has stopped almost entirely now too. Although she was a big jumpy today at therapy for some reason. Not much else to update today, sorry. Just another day in the life of a sweet little angel named Emma.

Touching poem

Emma's Aunt Lisa (Mimi) put this on a comment here but I thought it was too pretty to hide away so I am posting on the main page. I hope everyone likes it.

You aren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so he sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and love,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"

Quick Update

Emma went to physical therapy yesterday. She did pretty good. She got to get on the swing again with Amy. She likes that. We also talked to Julie about her feedings and we are thinking of changing the type of food she gets to see if that helps with the rash on her face. She is still a very big girl so we might have to make a few changes to help that too. She is about 30 lbs now. But I think she has also grown taller but its hard to tell, because she is so drawn up all the time. She had to use a little oxygen last night. Not much and not for very long, could be she just isn't all the way over her infection she was hospitalized for. Or she could have a small cold, but I don't think she does. She is doing fine now. That is about all I have to say today, not much going on, just waiting to watch OU football again. Emma loves it. Go Sooners

HAPPY BROTHER TO MY BIG BROTHER!

Today my brother Derek turned 5. He is a great big brother. I love him so much. He helps turn my feeding machine off, suctions my mouth and nose, talks to me, plays with me, and brushes my hair. He is a good helper. He makes me want to smile when he gives me kisses. HAPPY BIRTHDAY DEREK!!!

Remembering those lost September 11, 2001

God Bless America. Love Emma

Not much to say but here's an update

I just realized I had not updated in a whole week. Not much to update really. Emma had a good week. She is having no seizures since leaving the hospital. Its wonderful, she is so still sometimes I forget she is sitting by me! We tried out a new nurse on Thur who is not going to work out. She just didn't seem interested in being here or asking questions. She didn't know how to work Emma's vent (she had some training but not on this type of vent) and when we tried to show her she paid no attention to it, and I had doubts that she would be a good nurse for Emma at night time. So we are still down to only 4 days a week with nurses. I am handling that ok. No nurses on Friday, Saturday or Wednesday night. I am tired today though because guess what the silly mommy did? I broke my toe! I hit it on Emma's stander. So needless to say between the pain and getting up with Emma last night I got zero sleep. OU football plays again today. Emma says "GO BIG RED!" I hope we win again, last week was a close call. Emma sure loves watching the game. She just stared and stared last weekend. She is looking forward to todays game. Thanks for checking on Emma sorry I dont have more to talk about, check back soon.

ARE YOU READY FOR SOME FOOTBALL?

GO OU! Emma is getting ready to watch the game in a few hours, wearing her OU clothes and getting ready for our cook out. I hope she stays awake for part of the game. We are so close to Owen Field if we open our windows we can hear the fans!

I hope everyone like the new look of her blog, I have been playing around lately and some of it has been hard to read. I like this look though.

Emma went to see her pumonologist

OU football starts Saturday, Emma wore her OU cheerleader dress today. She wanted me to post this and say GO OU!! for everyone to see.

Emma went to see her pulmonologist, Dr Royall today. He said she seems to be doing fine, he ordered his standard blood work on her, she got 5 stickers for being a good girl at the lab. He wants to see her again in a month and he will do another chest xray then. He was very nice to us today, and even joked with me when he saw me talking to my friend in the hall, whos daughter is also a patient. He told us to stop comparing notes on him, like we didn't have better things to talk about than him! Ha. She enjoyed getting outside and it wasnt as hot today so we spent a little time outside while waiting for our ride when we were done. She goes to physcial therapy tomorrow and she can't wait. I think she really misses Amy. I know her muscles sure do, she is stiff. Anyway that is the update for today.

GOING HOME!!

I took the lady bug ticker with "Days since Emma has been in the hospital down" because guess what? She is coming home tomorrow after 14 days there! We are so excited. She is doing much better and we are thrilled to get her home, we will be having a "party". Thank you all so much for checking on her and praying for her. I will of course be updating this blog as usual but hopefully won't have too much to share like I have the last few weeks.

On a not so happy note we have lost some of our nursing care because they no longer can keep us staffed so we have gone from 12 hrs a day 6 days a week to 12 hrs a day 4 days a week. I will be sleeping on the couch those 3 nights keeping an eye on her. Its actually a little bit of a good thing since I am very picky when it comes to Emma and no one takes care of her like me!

Thanks again for your prayers make sure you check back soon and see how her trip home goes tomorrow.

Hurry and come home Sissy

Just a note from Ella to say "HURRY AND COME HOME SISSY!" I miss seeing my girls loving like the above picture, its my favorite picture ever. Emma is doing about the same as when I left today and its only a few more hours until morning when I can see her again. I have to bring some things to the hospital so we can try her on her home vent. Wish her luck and I will update tomorrow afternoon.

What a diffrence a day makes

What a diffrence a day makes! We are doing the happy dance today, its the first day we have heard the words "home" as in "Emma should be going HOME in a few days!"

They want to try to put her on her home vent and see how she does the next few days, her xray is looking better. No more insulin so blood sugar is good. She is being slowly weaned off the 2 sedatives and she opened her eyes and looked at me today! Her home nurse DeLene came to see her and she opened her eyes and looked at her too. She looks much better. All pink and pretty. They had her hair put up in piggy tails when I got there it was so cute. The social worker set it up so I have rides through Sunday in case we stay that long.

I have to deal with the nursing company and see who our nurses aregoing to be, and make sure we have all the supplies we need. I hate to get my hopes up but it sounds like she really will be coming home. We also have to wait and see what her seizures do when she is off the sedatives.

Our friend Kara is in the hospital sick now, she is at a diffrent hospital than Emma though. All of those praying for Emma please add a special prayer for Kara too, she has an infection in her trach/lungs too. Poor kid. She cant seem to get a break lately.

Well that is all the news for now. Keep your fingers crossed that we will get to come home soon.

Monday Update

I tried to post this earlier but the website has been slow today. Nothing to update really, Emma is the same. Not any worse but not really any better. Xray is unchanged. I will be seeing her tomorrow and can't wait. Ihope tomorrows xray does better. They said she is just so very sick it may take her some time to get well. For all those who care, her big brother Derek went to school for the first time today. He did good and had fun and can't wait until tomorrow so he can go back.

No change on xray AGAIN

Today's xray is unchanged. Not worse which is great, but not better either. They said she is just very very sick and it might take her a while to get better. She has had a few good days the last 2 days, weaning off some of the oxygen and new ventilator settings and weaning off a few of the medicines. It is just highly discouraging that she isn't showing improvements on the xrays. It just feels like she is never going to get better. I know that she will and that we just have to be patient but I miss my baby girl and want her to come home. I can't wait to go see her on Tue.

Sunday Aug 20 10:20am

Emma had a good night last night, no issues with her oxygen, they made a few vent setting changes and she is doing well with that. The doctor did not order an early am xray so he ordered one done for later this morning. The nurse said that they should know what it looked like by earlier afternoon or so. She said since she had an uneventful day yesterday and last night she expected it would look much better. We will see I guess. Keep your fingers crossed. Derek picked out this Blue's Clues puppy for the blog today because its Emma's favorite cartoon. Hope you like it. I will update when we hear about the xray or when any news comes in. I made sure the nurse knew to turn on nascar for Emma to listen to.

Sat Aug 19 night time update

Well no big news tonight, no problems, no changes. I guess that is good in a way. I just wish she would hurry up and get better! I hate not having her here at home. Its too quite without her vent going, I never noticed that it was all that noisy but the silence is killing me. I keep looking at her bed tonight expecting her to be over there sleeping but she isn't. Emma is such a big part of our lives that we all feel lost without her here. I can't even sleep good at night without her in the house, and I worry that she isn't getting better. I just wish we would see a big improvement very soon. All we can do is keep praying, and Emma has to do the rest. She is very strong so I know she will be fine. I am hoping with the uneventful and restful day that means her next xray will show improvements. I already told the nurse that she has to make sure tomorrow's nurse turns on the Nascar race for Emma to listen to. I will remind the nurse tomorrow if we don't get a chance to get up there and visit her. Dad set up rides through our insurance for Tue Wed and Thur so atleast I know those days are set for me to see her (or Dad to go). Thanks for the support all good night for now.

Aug 19 Morning Update

Just got off the phone with the hospital and all is the same with Emma. No improvement on her xray today but its not any worse so atleast that is good. Last night I talked to them before bed and they said Emma had opened her eyes to peer at them once. She then started making a lot of "talking" gurgle noises and acting upset. The nurse read her an email from me, rubbed her hair and talked to her but she wouldn't quite down. Even after they put a bit more air in her ET tube to seal any leaks she kept talking. The nurse said she had been talking about her sister Ella stealing all her toys and clothes while she was gone (She has been a little stinker) and that is when she got all upset! Ha Ha. The nurse said maybe she was looking for Mommy. :-( Anyway she gave her some Motrin thinking maybe she was just hurting somewhere and she quited down. I think maybe her cheek hurt where that sore is or maybe her urinary cath is hurting her. I hate those things. Poor baby, she is being so strong and this is the first time she really "cried" of course she could have been talking because she was bored too. Hard to tell. Keep praying for her and pray that xray tomorrow shows some improvement, this sure is going to be a long hospital stay.

I saw my baby today!! Friday night update

I FINALLY got to go up and see Emma today. She is doing much better but is still very sick. She has a long way to go to get home. She is no longer on the medicine that paralyzes her. She is only on versed and fentanyl to keep her sedated, insulin because her blood sugar is still wacky, and her anitbiotic meropenum. She got taken off the Norepi for her blood pressure today, as it was finally stablized. She has gained 1.2 kg (2.6 lbs) since going in due to all the fluid retention, they dont have her on any iv type fluid, just her milk. They had to give her more lasix today to make her go pee pee for them and get rid of some of the fluid.

She was on her tummy all day yesterday and despite the nurses best effort to keep her out of her own spit, she got a very raw spot on her face. It looks like a carpet burn, there are 2 actually one the size of a quarter the other a dime. I know though that the position helped her lungs a lot so I guess its worth the sore face. They really felt bad about it and said they changed her bedding a dozen times yesterday so I guess they did their best.

They moved her AGAIN last night to another ICU room not sure why but this one is bigger and nicer. I read her some nursery rhymes and got lots of kisses today. She had her hair in a ponytail on the top of her head, pink and green socks with flowers on them, and a really sweet blanket on when I got there. I think they dolled her up for mommy. Anyway that is the just of today's visit, I am not sharing every detail because they are my special memories, only shared by Mommy and Emma, but I am glad I got to share a little with you. Thanks for the prayers and support.

I'm off to see my baby....the most wonderful baby of all. (shh dont tell Ella I said that) Going to the hospital in about 5 mins, I will write when I get home. News this morning is good.

Update Thur night

Just got back from Derek's back to school night, and I cant believe my baby starts school on Monday!! He did ok. Called the hospital as soon as we got back and Emma is doing about the same. They will have her off the nitric oxide by the end of the night with any luck. I am going up there early in the morning and can't wait to see her. I want to see the xrays too and see what we are actually dealing with as of now. Please pray that tomorrow mornings xray shows some impovement. Not too much else to share but I wanted to post to let everyone know she is doing ok.

A special prayer for Emma

Heavenly Father,Look with mercy on Emma,And help her in this time of sickness.Restore her to health, we pray,through Christ our Lord.Amen.

Finally some good news

Finally some good news, not HUGE news but at this point any positive things are good. Emma's chest xray is looking better today, the left lung anyway. The nurse said her right lung is still not improving, which was a shock to me because I never even knew her right lung was sick, they just kept saying her left. So when I get up there I will have to see the xrays for myself. The 3 I saw from this weekend her right lung looked fine. Anyway lets not take away from the GOOD news. Horrah left lung!! They have her laying on her tummy today trying to get that stuff in her lungs to break up. Its a good thing they have her paralyzed because usually she doesnt like that tummy much. She must be doing a little better, because last Thur at Physical Therapy Amy and I couldnt get her to tolerate her tummy well. The nurse told me on the phone she still has a long way to go to get better. I guess even MORE setbacks are expected but atleast finally I have some happy news to share, be it small happy news. Thanks for your continued support everyone!!

Wed. evening update

Emma had another spell where she didn't want to keep her oxygen saturation up today. Around noon time they had to go back in a do a scope down her neck and look at her lungs and "grab" a bunch of gunk out when they were in there. Poor girl. She did ok with it and its breathing much better now. They are doing cultures on the stuff the pulled out to make sure they are treating her with the right medicines. I can't wait until tomorrow to see if her xray improves. I thought she would be getting better by now. Its very discouraging but I keep looking at it this way: atleast she isn't getting any worse. Usually when she gets sick like this she is well and home by now. I have a feeling this is going to be a really long trip. Ugh. Poor kid. She is a fighter though. Keep praying for her.

Wed. Morning update

Emma's xray is unchanged again. They said she got a leak in the ET tube they had put in and that is what probably caused her not to improve. The reinserted the tube and she should do well now. Fingers crossed. I dont know if I touched on that or not but maybe my sister did. An ET tube is a little diffrent than a trach tube. It looks more like a clear straw and has a cuff inside of it that seals around the inside of her stoma (hole where trach goes) so that air can not leak out. They have her weaned almost completely off some of her medicines now which is good. The fewer the better. They gave her some lasix which helped her pee. I am not sure why she is not peeing good for them this trip but she isn't. The lasix just makes it where she won't reatain water. By the way for those of you who are interested in these medicines or conditions I mention I have found that www.google.com is a great place to look them up as well as the other search engine www.ask.com I have to use them every time I talk to the hospital so I can check the way a drug works or the side effects.

I am going to try to get up to see Emma today but it all depends on my friends who are supposed to take me. I have a ride set up through our insurance but the earliest they can pick me up is Friday morning, and then I can set up rides there after with them.

On a lighter note Derek has back to school night tomorrow night. Wish him luck, he is nervous about school.

Another Update

As I type Emma's oxygen sats are low again. They were at 83 when I called a few mins ago. Daddy is at work and the kids are in bed, or I think I would go on up there, but the nurse said its nothing to worry about really and I will see Emma tomorrow. The nurse said that they are weaning her off the nitric oxide they were having her inhale (it helps with oxygen absorbtion) and that she was maybe not ready to come off of it. They had just given her CPT where they pat her on the back to loosen up all the gunk in her lungs, got her rolled to her other side and she just started acting up. I am worried but since her sats are atleast hanging in the 80's I am not as worried as I could be if they were lower. It drives me nuts not to be with her but after the stress of the last few days it might be better if I worry at home instead of right in front of my baby girl.

The nurse had to run and help respitory figure something out for her so I will call again soon. I will try to post tonight with an update but if not i will post tomorrow morning.

Keep sending Emma your prayers

Update

Well Emma is doing about the same. They havent read her latest xray yet but yesterday's showed slight improvement. They stopped the dopamine drip, since her blood pressure has stablized. Yesterday the steroids were making her blood sugar all wacky so they have her on some insulin for that.
I did find out her redness the other day was from them giving her her vancamiocin (spelling!??) too fast and that is probably also what caused her breathing spells she had too, with the desats. Apparently she is very allergic to it, especially when given to fast. The redness is called "Red Man's syndrome" which isnt politically correct I guess but that is what it is called.
I am trying to get up to see her but things today are crazy at home, its payday, school is starting and my husband has to work but I am for sure going back up tomorrow. I hate being away but I know its for the best really because they are wanting her to stay calm and quite and have her in a dark room to try to keep her calm and able to get well.
Thanks for all the prayers. Oh they put her into a bigger PICU room 2 nights ago too, the other was too small for all the equipment she needs.

Monday Morning update

Well last night we called to check on Emma and they told us she had another one of those breathing episodes were even though she was breathing (the vent was breathing for her) her oxygen levels were much too low. Well now they think its a reaction to the antibiotic they gave her called Vancomycin. So they discontinued that and have started something new, I don't have the name of it yet. I asked yesterday if it could be the medicine that made her have the spell as she was also bright red all over like she had a terrible sunburn. They told me the red was from being excited, and that there was NO way she had never been given this drug before and that all the breathing problems were due entirely to her gunky lungs. I was not happy last night when they said it was the drug as you can imagine. So Daddy called this morning really early to check on her and she is doing much better on the new medicine and she is. Her x-ray showed signs of improvement! So lets just pray that she keeps getting well so she can hurry and come home.

I am taking brother school shopping today since school starts a week from tomorrow and then will see about going up there possibly later but Dad is working tonight so I might try to stay home one more night and be with Ella and Derek and return to the hospital during the day tomorrow. Not sure yet what the plans will be.

6:15 Pm Sunday the 13th

I will update as I hear more. I will hopefully be spending days with Emma and nights here at home so I can update.

Emma is still running a fever so they gave her Motrin instead of tyelonl. They did a blood gas test and it came back good, no worries with her oxygen or carbon dixoide or PH in her blood. They did have to start her on a drip of Dopamine because her blood pressure it too low. Mainly the lower part of a blood pressure. I will call in a few hours to make sure it making it go up.

I am just so tired, and worried. This is as sick as she has ever been. I am very positive when at the hospital but to be honest I am a total wreck inside. Its very hard seeing her this sick. But Emma is very strong and I know she will pull through this. I keep telling her how proud I am of her and how good she is doing and what a little fighter she is. Even though she was sedated today and most of yesterday I think she heard me!

Sorry if my posts arent pretty and fancy lately I am just too busy! Thanks everyone for your prayers

Sick Sick Girl

Ok I am home for a bit, so I thought I would update you. She is still sedated, and they also gave her a medicine to paralyze her so she would stop fighting the new vent and to keep her from breathing over it at all. Her xray was worse this morning. Her cultures grew something called Serratia Marcesscens, so they are now able to treat her with the correct antibiotics.

She had a very scary spell right before I came home, so I was stuck there for several more hours. She desatted into the low 80's and then kept going to 68, they were able to bag her and keep her in the low 80s while trying to gigure out what was going on. They did a chest xray to check for a collapsed lung but that was ok, they used sodium bicarb to suction her with, no luck with any plug. It was scary when the resp. person said "get a doctor RIGHT now!" So they did a scope on her and did a deep cleaning of her lungs while down there. She was just full of gunk normal suctioning wouldnt get out. I called when I got home and she is satting 100 at 40% oxygen. They will be doing a blood gas any min and if its ok they will crank the oxygen down. Thank God my friend Lori was there with me, she was a nervous wreck but I handle it fairly well. Now I am a wreck but I will be ok with a little time and some sleep.

Anyway that is a quick update, they are trying to wean some oxygen and vent settings, will do another xray in the morning. More breating treatments and antiboitics. They think her next xray will look better.

Update on Emma (from her Aunt Lisa)

Hi this is Emma's Aunt Lisa. Lori has asked that I get on and post an update because she doesn't have access to the Internet right now.

They took Emma into the Emergency Room in Norman yesterday and they have since transferred her to the PICU at Baptist Medical Center in Oklahoma City. She has pneumonia again. This time in the lower lobe of her left lung. The put a urinary cath in her yesterday which she didn't much care for as well as a femeral artery line in her groin area. The line will make it easier to give her medicine because they won't have to stick her each time.

They also went ahead and did a EEG on her this morning. The official report is not in yet, but it looks like the little "jumps" Emma has are indeed seizures. They gave her a big dose of phenobarbital through her IV today.

Emma seems to be doing okay for now, she just needs some medicine and rest.

Please keep Emma in your prayers as well as Lori. Pray that God gives them both the strength they need to get through this. If anyone has any questions or comments you can email me at QueenieLisa@aol.com

Anyone who would like to send a e-card to Emma through the hospital or a prayer requests may use the links below. Emma Richards in PICU

E-card https://www.integris-health.com/INTEGRIS/en-US/Locations/okcNorth/BMC-okc/GetWellandEcards/IBMCEcard.htm

Prayer Request https://www.integris-health.com/INTEGRIS/en-US/Locations/okcNorth/BMC-okc/GetWellandEcards/prayerRequest.htm

Sick baby

We have a sick girl at our house. I have not mentioned here yet this weekend because I was hoping I was overreacting. But looks like Emma has a cold, I just got over a cold too, tried to stay away from her but someone has to take care of her! She had a small fever last night so I am watching her carefully. She has been really gunky in her chest and we are having to suction her trach quite a bit. She had to have oxygen for about 20 or 30 mins 2 times yesterday. Not very much oxygen but some and that is not the norm for her. Anyway she is supposed to have her evaluation for speech therapy tomorrow but if she keeps the fever I am calling them and keeping her home. I don't want to make her worse or make kids there sick. I am hoping it will all be over with in the next day or two so she can atleast go to Physical Therapy on Thursday, since she missed last week she really needs to go. But better safe than sorry. I am just so afraid to get other kids out at JD McCarty sick. Those children are all so strong but they shouldn't have to deal with a cold because of Emma. She is resting in her bed right now and seems to be doing a little better. I will keep everyone updated.

A poem for Emma

A poem for Emma from her Mommy. Because she is a privilege to me always.

HEAVEN'S SPECIAL CHILD
A meeting was held quite far from Earth,
It's time again for another birth,
Said the Angels to the Lord above.
This Special Child will need much love!

Her progress may be very slow,
Accomplishments she may not show,
She'll require extra care,
From the folks she meets down there.

She may not run, laugh or play,
Her thoughts may seem far away.
In many ways she won't adapt,
She'll be known as handicapped.

So, let's be careful where she's sent,
We want her life to be content.
Please Lord, find the family who,
Can do a special job for you!

They will not realize right away,
The leading role they are asked to play
But with this child from above,
Comes stronger faith and richer love.

And soon they'll know the privilege given,
In caring for their gift from Heaven.
Their precious challenge, so meek and mild,
Will be known as Heaven's Special Child!

Emma's friends

From time to time I am going to start sharing about some of Emma's dear friends. She isnt friends with a lot of children but she is friends with some amazing adults who have her best interest at heart. Today I want to share with everyone Emma's friend and physical therapist Amy. I know she reads this so now I get my chance to make her blush. But I also have to let the world know how amazing she is. Amy works at the JD McCarty center in Norman OK. She is very good with Emma, she is very gentle but she can get tough with Emma if need be. Its people like her that really give Emma all the courage and strength to do things. She always seems happy to see Emma, and even gives her a few cuddles here and there (you cant fool me Amy I see you cuddling her!) She is very good at her job, probably the best therapist I have seen. If something is giving Emma problems she tries to fix it. Emma is very difficult when it comes to making splints and finding theapies that work for her but Amy has never given up. Most people would have told me long ago she is a lost cause but not Amy. She ordered a neck brace which we HOPE works but not sure it will, she really brain stormed on what to do about that little neck that always stays turned to the right. She also worked on foot splints even though she had never made them in the exact way Emma needed them (she is opposite from most people who needs splints). In Emma's life I have come across so many people that just give up and think I should give up too but not Amy she is very supportive of the things we try to do for and with Emma. THANKS AMY!! Take a bow. You are truly a good friend to Emma and our family.

Still a bit jumpy

Well Emma is still a little jumpy but over all is doing pretty good. She is over staring at her nurse right now. She missed Physical Therapy today due to a mix up in the rides (SORRY AMY!). Her new neck collar come via UPS today so next week I will take it in and Amy and I can try to figure the thing out. IF it fits her. I hope it does. It looks very small in the package which is good because she has no neck but I still wonder if its too big. I guess we will see. I am messing with the look of the blog, so if you don't like it let me know. I put a age counter up toward the top that will stay there always, because everyone is always asking me how old she is. Now you can just look. I put a welcome to Emma's blog at the top too, which will stay up there at all times. Its a work in progress. Hope you enjoy it. Emma sends all her love to everyone reading

Emma went to see Dr Wright today for her muscle stiffness. He was very nice, I was highly impressed. He told me a few options we have with Emma and let me kind of pick what to do. We have decided to try a medicine that should help her muscles relax some its called klonopin she was on it once before but they took her off to see if that was what was causing her to stop breathing, it was not. Anyway we see him again in a month and we can figure out if its working good or not and decide if we should continue it. It makes you sleepy, so we might make her so tired she sleeps ALL the time or it might cause her sleep apnea to act up but that won't be a big problem physically though thanks to her ventilator.

Our other options if this does not work is to try another medicine or try botox injections. He also suggested botox injections into her salvia glands to help reduce some of the spit she makes since she drools constantly. I am thinking that sounds pretty good, although I have to do some more research on it online, I hear it is painful and I am not sure about the side effects.

It was hot, the guy from the medical driving company was nice to us and waited for us to finish so we had no waiting and today's trip went quick and easy. We will get her Klonopin tomorrow and I will let everyone know how she does on it in a few days.

We will get her all fixed up soon I hope, atleast as fixed up as she can possibly be, it would be so nice to get her less stiff, it will be easier to hold her and dress her. She is very hard to get into pants so I am hoping by winter we see good results.

Quote

I came across a quote today that applies so much to how Emmas dad and myself think of her situation and I wanted to share it with everyone.

"Each difficult moment has the potential to open my eyes and open my heart."--Myla Kabat-Zinn

Emma has taught us so much patience and love. We will always be her biggest supporters and i hope those who are reading this will also continue to support her always. From Emmas heart and ours Thank you

PT today

Emmas name in Japenese isnt it cute? Emma went to physical therpay today. All went well not too much to talk about. Amy was very happy with Emma's hips as always they are much improved. Now if she could just get her to not only bring them in but put them down some it would be great. She got weigthed at 28 bls 4 oz which makes me think the weight of 26 something 2 weeks ago was off. I thought she was more about the size we got today. We will try to way her weekly to find out what is the correct weight for her and see how the diet that skips a feeding is doing for her. She wore her new braclet today and kitty cat ears on a headband, she looked cute! She yelled at Amy a few times, I think she was trying to sleep and mean old Mommy and mean old Amy were trying to keep her up. I will update when there is more news

EEG waiting game

Well we are going to have to play the waiting game with Emma. Her EEG was set for Oct. 16. Almost a 3 month wait just to find out if she is having seizures or not. Plus they want her to be sleep deprived for the test. With Emma that is hard to do, her medicines and her brain dont allow us to really dictate when she is awake or asleep. She sleeps often and she sleeps when she wants. I will call tomorrow and see what we can do about the sleep deprivation thing. I tried to call earlier but they are one of those weird offices that closes at 4pm!

She is staying more awake on her medicine now, I think she is adjusting. She has had a few shakes though, but we still wont be on the full dose of the new stuff until Friday. So keep your fingers crossed and say lots of prayers that it will work.

Sleeping Beauty

We think Emma's new medicine is working on her seizures. She has only jumped once since Sat night. The only problem is it makes her sleep all the time. She hasnt woken up to even peek at me today. We will call the doctor tomorrow and let her know. She said it could make her sleepy, but she isnt even on the whole dose yet. Maybe they will start weaning her off the old medicine and that will make a diffrence. We will see. For now though we have a sleeping beauty at our house. I guess the rest will do her some good, and when she wakes up she will have had lots of dreams to "tell" me about.

Leave a comment

I have shared this blog with many new people lately, as well as my family sharing it. I just wanted to thank everyone for visiting and remind everyone that we love getting comments. That way we know who has been here to visit Emma. Just hit comment at the end of any post and you can comment on that or anything else you would like. Thank you again for visiting Emma's blog

Took first dose of Zonegran

Emma got her new medicine last night and has taken it once. Its called Zonegran, I didnt notice an immediate change or anything but it may take a few days or even weeks. The nurse here today said that she is quiter than normal. I thought she would be really sleepy with it and her phenobarbital but so far she hasnt been. She was awake and so alert last night, she kept staring at me. I talked to her about all kinds of things. We talked about how her new medicine might make her feel icky but that soon she wouldnt be my shakey baby anymore. But that she would always be my favorite baby (shhh dont tell Ella!)

She is sleeping right now, and needs to wake up soon and get in her chair or stander. She was awake until probably atleast 3 last night. Poor kiddo. I am hoping as a side effect this new medicine will help her sleep at night. She is such a night owl.

Well that is the update for today, sorry not much to say but I promise to update more when something happens and keep you all updated on how well this new medicine works.

Seizures

I had to post a picture of the sun because its is HOT today, its only 1pm and its 104 outside already high is going to be 106 and 110 tomorrow. Emma doesnt like the heat.

We went to the neurologist today. The little jumps that Emma has been having for over a year now are apparently something called myoclonic seizures. They will be doing an EEG of her brain in 2 months to make sure, there is a huge waiting list to get the test done. An electroencephalogram (EEG) is a test to detect abnormalities in the electrical activity of the brain. It will confirm if they are seizures or not.

Dr Parke gave us a prescription for something called Zonegran which should help Emma. She will then slowly wean her from her phenobarbital if this new medicine works. She is on the lowest dose pill they make and no one in Norman carries it. Thank God for CVS pharmacy because they will special order it for me and it will on take a day or two to get it.

At first the thought of Emma having seizures scared me, I mean we always were told they were not seizures. Then I got to thinking and well she is the same today as she was a week a month and a year ago, we just know what they are now. So I am not bothered by the diagnoses, but more encouraged because now we can treat it properly.

Emma wore her new blue dress to the doctor, and brought her new barbie doll along, she had a cute head band in and everyone thought she looked adorable. She was really sweating due to the heat, I hate this heatwave but come Sat we are supposed to have a cool down.

Movie Star

Look Emma is a movie star! She got a star on the walk of fame. Ok not really but she as pretty as a movie star and I thought she deserved this. Nothing too earth shattering to report. She is doing well, she hasnt been liking her stander the last few times we have put her in it but I think she will get used to it. The other night Emma and I listened to music for a long time, and she sure loved it. She tried to sing with me I think, atleast it looked like it. She puckered up her lips and made this cute little blowing noise and had such an adorable face. Not sure if it was actual singing but it was a reaction of some sort. Maybe she was yelling at me to stop singing? Who knows. Yesterday was the 11th wedding anniversary for Darren and Me. Darren got me roses and I gave one of them to Emma. She liked it when I tickled her cheek with it. She opened her eyes and looked right at me. Sorry there isnt much to talk about, just wanted to tell everyone she is still doing fine. I hope to have some big news on the 20th after we see the brain doctor.

A day in the life of Emma

Ok everyone always says there must be so much work involved in taking care of Emma. Really its not that bad. So I thought I would post a sample of what her day is normally like. Things in red happen at that certain time. Things in blue happen at around that time everyday. There are things like suctioning her that pretty much happens when she needs it but I have also included that in blue, some days she requires more mouth and nose suctioning or trach suctioning but this is a rough look at how a typical day goes. Warning this post will be rather long!!

9 am --Mommy gives me my phenobarbital and starts my feeding pump. I am usually still asleep.
10am--Mommy turns my feeding off and flushes my mickey button with water.
1030--I am drooling pretty good so someone (mom or dad) has to suction my mouth.
11am--I get to get in my chair for a while, I like sitting up. My diaper also gets changed. I am usually awake by now.
12pm-My vitamins are given to me and I get my food started again.
1pm--My feeding pump is turned off since I am all done eating and I get my flush of water, I also have to have my mouth suctioned again I have drooled all over my "spit rag" that I have by my face. Mom changes out my bedding.
2pm--I get put back in my bed, diaper checked again. I am put on my side or back. I am probably naping by now.
3pm--My feeding gets started again. Yummy Yummy Better suction my mouth again!
4pm--I get my food finished up and flushed, then get turned to a different position in my bed. My mouth is drooling again suction me!
5pm--Diaper checked and I am back in my chair. How fun. I like to try to watch TV, sometimes I am still sleeping and sometimes I am awake. I sometimes get my bath now, although I don't get a bath in the big bath every day.
6pm--Food time again, start up my feeding pump!!
7pm--Feeding is over and I get flushed. My mouth is leaking so suction my mouth now.
8pm-I get put back in my bed usually and get my trach suctioned around this time. As I get a little icky. My mouth gets suctioned too, diaper changed, my bedding was switched before I was put back in bed. I also get my necked cleaned and my trach ties changed. I get my PT done. I usually like it. This hour is Mommy's busiest its right after Ella goes to sleep.
9pm--My nurses get here, I get my phenobarbital again, my feeding started, my vitals checked. I get lots of love from my nurse.
10pm--my feeding is done, I get flushed and I get turned to a new position, Suction my mouth again
11pm--Mom is usually busy or sleeping and the Nurses play with me or watch me or whatever they want to do with me. Suction my mouth probably
12am--Feeding time again, suction my mouth, change my bedding probably.
1am--Food is over, I get flushed and the nurse turns me to a new spot in my bed and change my diaper
2am--God only knows what I do at this hour, my mom is normally sleeping, but the nurses probably suction my mouth and trach for the 2nd time today.
3am--MORE FOOD!!! Suction of the mouth Nurse turns me again
4am--Food is done flush me, I am awake most likely and have been for most of the night.
5am--The nurse probably turns me again, and I am just falling asleep for a while.
6am--Suction my mouth and start my food. Diaper me please
7am--Food is done, some nights my nurses sponge bath me.
8am--Turn me again if you haven't already and watch me sleep Suction my drooling mouth
9am--My day starts all over again
Emma also wears different splints for several hours a day, I didn't include that in her basic story there but they go on and off every 3 hours different ones. She also gets in her stander for a little bit each day but it just depends on when we can find the time to do it when she is awake and the other two kids aren't running crazy.
Some days are different than others, but the feedings all happen at the same time, some days we suction her trach like 4 or 5 times, sometimes not at all. What is hard is to do all this and to still manage the other kids and dinner and errands. Her feedings take about 1 min to start and her diapers well you know how long that takes, most of the time all her stuff is pretty quick with the exception of all the stuff I do around 8pm. Oh and how could I forget the 10 times or so a day you have to dump the water from her venitlator tubing, and the alarms that beep about 10 times or so a day.

Quick Update, not much new

Not too much new to update just waiting to see the neurologist on July 20th to hopefully get Emma some medicine for her spasms she has. She isn't as jumpy as she used to be, but she has good days and bads regarding that. For those of you who have not seen her have a spasm she jumps about 4 or 5 quick times and that is it. Sometimes she does it a few times in a row. I have been told they are not seizures, but am confused since she is on seizure medicine but the doctor says she is not considered a seizure patient. So we will see. I hope to get her off the medicine she is on now and on something that will help more with spasms.

Many of you have asked me where Emma go her pretty name. Well, her daddy's grandmother was named Emma Garvene. So we borrowed Emma from her, she is an angel in heaven now. We used to want the name to be Emma Jane, Jane being after my grandmother who passed away when I was 7. However, when I was pregnant with Emma and Ella, Darren's other grandma passed away. Her name was Wanda Louise and I really wanted to use the Louise. Turns out Emma and Louise are both German in origin so maybe that is why it sounds so good together. I love the meanings too. Emma means Universal, all embracing and Louise means warrior maiden. In a way I am glad we went with Louise, since Emma is my little warrior. She is such a strong little girl. I am very proud of her and I love to brag as you can tell.

I will update again when there is more info to share. Thanks everyone for taking the time to share in Emma's life.

Family

I got to thinking the other day when I thanked my niece for being so supportive of Emma how lucky Emma really is. She has so much family that loves her. Her cousins, aunts and uncles and her grandparents are so very kind to her, and thats only touching on it a little bit of the family. Even my own cousin I havent talked to in years saw this blog and fell in love with Emma. I think that Emma is a very blessed young lady to have such a great family and wonderful friends that want the best for her. THANK YOU EVERYONE.

Emma is doing good today just hanging out enjoying her saturday. Ella was over playing with her for a while. I think they were playing dog pile on Emma ha ha. It was cute. Emma didnt even seem to care, she loves Ella so much. Will update again when I have time. I posted a picture in this post to saya special HI to Brandon my nephew because he is a very good cousin to Emma. Thank you Brandon.

Therapy Day

Emma had physical therapy today. She did very well. She got to be on the big swing with Amy. Amy does very good with Emma. I think Emma likes it when Amy cuddles with her. Her hips were behaving today and she let Amy move them in quite a bit and work them out. Her knees were a tad stiff though I think. We had her weighted and she is under 27 lbs now! She has lost about a pound. That is great since we changed her feedings so she would not put on much more weight, losing is pretty good. We will miss therapy next week because Amy will be gone and the week after Emma has a doctors appointment so we will miss again. We will just have to do a little extra work with her at home!

I would like to put a shout out of "HELLO" to my niece Elizabeth. She is Emma's favorite girl cousin. Elizabeth has been very supportive of Emma and we just wanted to say THANK YOU LIZ!!!

I saw fireworks!!

Emma sat and watched the fireworks like such a big girl. She did not jump or anything. She just gazed at them and had a blast. Derek and Ella and I took her and her nurse down about half a block from our house and we sat on the sidewalk near a field where lots of people were sitting and watching. I was amazed at how interested Emma seemed. I wish it was Fourth of July everyday! Ella and Derek were fussy but not Miss Emma, she just loved it

HAPPY FOURTH OF JULY!!!!!

Happy Fourth of July Everyone!! We hope you have a great holiday. Emma and her brother and sister along with Mommy and the nurse will be TRYING to go to see the big fireworks tonight in a fieldby our apartments. I say trying because as of current it is raining! Oh no! We have a little "party" planned thanks to Derek. We have a happy fourth of july sign, posters, and plates and cups with flags on them. We even got a fourth of july cake. Yummy. I will update later or possibly tomorrow and let you know how things go tonight. I just had to post early so all you who read today could know that we wish you a very happy and safe Independnce Day!! I also posted this picture of Emma in a red white and blue sparkle hat. Isnt she a doll?

Family Pictures

Clicking on a picture will make it bigger for you!!