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!!

Emma Pics in Stander

Emma in her new stander! Its set right now to her natural bends so she looks kind of funny in it but soon we will pull it in, and get her legs a little more straight over time I hope.

Update on Emma's face rash

Nothing too earth shattering to share, I just wanted to tell everyone the rash on Emma's face was looking much better. She has been fighting with it off and on since about Dec. We thought it was eczema but not sure. The doctor is just still calling it a rash. The doctor said use cortaid on it but we can only use it for a week at a time. Now I am also putting a lanolin ointment on it during the off times we can't use the cortaid. She is looking much better. She is tolerating her stander fairly well. She is about to get back in her chair and watch Nascar with her mommy. I love when she watches it with me. She likes Carl Edwards #99 because he does a back flip when he wins! I will update more soon and hopefully have a few new pictures of her to share.

Emma has her stander

Emma went to physical therapy today and we got her stander. I almost cried seeing her in
an upright position for the first time. She looks really good. I will try to get a picture of her in it in a day or two and post if for you to see. What does a stander do? Well, it will help her straighten her knees and bring in her hips. It will also help her to learn to put weight on her legs. I am so excited about getting her legs straighter and more inward. That way she can wear dresses and not show off her whole diaper! She will be in her stander starting just for 10 mins or so and work up to an hour and possibly more a day. It may take months or years even to get her to be more straight with her legs. I told her if she did a good job I would get her a fancy dress to wear. She seems to like being in it, and only fussed for a little bit. I will have her in it again tomorrow and we will see how things go. Everything else is great. She is resting and was snoring last time I checked.

In Memory of our friend Olivia....

I had to post here, as I know many of you are also following the story of our friends the Ritchies.http://www.ourpreciousones.blogspot.com/ There daughter Olivia passed away this afternoon. Though my family never met them, we followed their story like they were family. God Bless you Olivia you will be missed always.

IN LOVING MEMORY OF OLIVIA RITCHIE APRIL ,2006-JUNE 29, 2006

New Teeth!!!

I was feeling around in Emma's mouth again last night and guess what? You can actually SEE the little tooth coming in on the bottom. Its her lateral incisor on her lower left side. Oh I am so excited. Most babies get that tooth at about 10-16 months but Emma is slow getting hers. Since she does not eat with her mouth, but rather by g-tube she doesn't get to chew and chewing is what helps teeth come in. I am not sure which one she is getting on the upper right of her mouth but its possibly a canine or first molar. So she has 4 teeth now. 2 that she has had since Christmas time (2 lower central incisors) and the new ones she is getting now. I cant imagine what she will look like with a mouth full of teeth. She is already starting to look so grown up in her face. She is just so very pretty. Here is a teeth chart to see which teeth she is getting

Emma went to Physical Therapy yesterday and did pretty well. Her right shoulder was giving us a bit of trouble with being stiff and popping. She also has to work on her "thigh" muscles. They are very stiff, more so than the rest of her. We found out the parts for her tiger cart should be to us next week with any luck and her stander is almost done and ready for us too. Amy, her therapist, ordered her a neck brace that will take some time to get but we are hoping it will help train her to hold her head more midline and make her look straight instead of leaning that lazy old head to her right.

Our friends Amy and Brian are having a very hard time with their daughter Olivia being at home. Olivia is not doing well and probably won't be around for much longer. This makes my family very sad, and we think of little Olivia every day. Her family has been so blessed to have her, and I only pray that if God takes her they can look at the beauty of her life and not just the sadness of losing her. Her blog is http://www.ourpreciousones.blogspot.com/ in case you want to check up on her.

Emma is doing well for now, not too much more to update. Thank you all for your continued support of Emma.

By the way Thanks to Nikki at http://scottysbebe.forumup.org/index.php?mforum=scottysbebe for making the cute little lady bug tag picture of Emma I posted here.

Haven't posted in a while

There hasn't been much news to share but I thought I would make a quick note and let everyone know that Emma is doing great. She got a bath today and after her bath I put a headband on her with a flower on it, a pink "girly" bracelet and gave her a pink purse to hold. She looked adorable, I wish we had a camera to catch all her cute moments with. She has been medically about the same. Been continuing her PT here at home and she will go to see Amy for PT on Thursday. Ella has been saying "M" more lately and going over to love on Emma. Twins are just too cute that way. Emma is getting more teeth, hard to say how many more but I would guess 2? They are starting to poke through the games. I am sure her 2 teeth she has now will look forward to having some buddies.

1 year on the Vent

Celebrating 1 year that Emma has been on her vent. June 8th 2005-June 8 2006 and still counting the days until she gets rid of it.

Its a bitter sweet anniversary, on one hand her vent has saved her life and allowed her to be home with us instead of in intensive care somewhere. On the other hand she is still breathing with help of her ventilator and I never thought a year later she would still be on it. She can breathe without it I would say 98% of the time, but needs it she sleeps because that is when she stops breathing for herself. Like I said in an earlier post I am hoping we can talk the doctor into letting her wean off of it some. I will keep you updated on how that goes.

What a diffrence a year has made, she is bigger, stronger, and by the grace of God still with us today. She is even more beautiful that she was a year ago if that is possible. She is such a blessing to our family.

Prayers for our friends

We just want to ask everyone to visit our friend Olivia's blog. The Ritchie family are becoming dear friends of ours and their daughter could use lots of prayers. Please keep them in your thoughts and prayers. http://www.ourpreciousones.blogspot.com/ GET WELL SOON OLIVIA!!

Trying Emma off her ventilator

I have been trying Emma off her ventilator some lately and she has been doing great. Just 15 or 20 mins here and there during the day, since we don't have real weaning orders yet I have to be careful on what she is allowed to do. I will talk to the pulmo doctor when we see him next and hopefully we can try to get her off of it. His orders right now say we can take her off some as long as we are standing right over her, that is a little hard to do with 2 other kids in the house. I have noticed she still has spells where she is not breathing over her vent while she is asleep. I want to get her off the vent long enough to do a sleep study and maybe we can determine she has sleep apnea and that way we only have to have her on the vent while she is asleep. We will see. I just wanted to share with everyone how good she is doing. She has been awake a lot more lately and looking around. She wakes up when our puppy barks or her sister cries or yells. She watched the nurse about half the night last night. She is such a sweetheart.