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.