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.

HAPPY BIRTHDAY TO MOMMY!!

Pictures from Mommy's birthday. Daddy with Derek and Ella having a fit, Emma, Daddy and Ella (still having a fit) and Mommy and Ella (still crying) I don't know why Ella and Derek were such cry babies. I think they wanted to play more than they wanted to have their pictures made.

May 30, Mommy turned 30 and Emma had a tiny bit of cake on her lips to taste it, she didn't like it. I think she is the only girl in the world who hates chocolate. Emma required oxygen through part of the night not sure why. No fever, she was alert and happy. Guess she was just being stubborn. She seems fine now. Her Nanny and Poppy came to visit and bring me a birthday present (which I loved!) and she got to "play" with them. Took a few pictures and thought I would post some here.

Happy Memorial Day!

Happy Memorial Day everyone! Emma has spent today in "quiet reflection" (sleeping) in her chair. Her Great Grand dad and his wife stopped by for a visit today, they live in Grandbury Tx. Emma slept through the visit, only opening her eyes as they went out the front door to leave. I helped her wave bye bye. She looks very pretty today in her pink shirt and purple pants. She was up in her chair all day and is back in bed for a little bit. I plan to get her up again in a while. She spent last night watching the nascar race with me. Her favorite driver didn't win but her brother's favorite did. I imagine Emma was pretty upset by this. She was really gunky in her chest last night and needed lots of suctioning, and the same goes for today. I hope she isn't getting sick again. She seems ok other than the suctioning, I guess the humidty could have something to do with that since it is so hot here. Tomorrow is my birthday and I think she is going to help her brother and sister make me a cake. Despite her diet I will probably sneak a tiny tiny piece (crumb) of cake down her mickey button so she can say she had some cake with the rest of us.

Emma's Physical Therapy May 25

Emma's therapist Amy Morris with another client. I stole this picture from the JD McCarty website! I need to take some of Emma and Amy together. She loves Amy.

Emma did so good at her physcial therapy. She actually stayed awake through most of it, she usually goes to sleep. Her therapist Amy is wonderful. She sat on a big swing and held Emma and just started swinging away. It was the first time Emma had ever been on a swing and she did so great. She loved it and it put her to sleep! Despite the vent and all the cords going to her, she is finally starting to do something other kids do, swing! She looked so beautiful. Amy is still tyring to get a sample of a collar for Emma to wear to help her look more forward and not lean to her right side so much. She hopes to have it in next week. I hope so. Thats about it for this little update.

Pictures

Many of you have asked me what Emma looked like when she was born. So I thought I would post some pictures from my album. Also just had to post her picture with her "Poppy" (Grandpa) its one of my all time fave pictures of her and I am not even sure why! I just love it!
She sure was little way back when.

JD McCarty Center Norman OK

JD McCarty Center Norman OK



Maria Greenfield head of OT

I thought I would post some pictures of where Emma get's her physical therapy, occupational therapy and were she sees Dr. Davey for ortho. Maria Greenfield is who made Emma's hand splints and does her OT.

Saw the Ortho Doctor

We saw Dr. Davey today at the JD McCarty center here in Norman. He looked over Emma's muslces and her bones. He said she is just much to stiff for him to manage and is sending her to another doctor that is in Bethany OK. His name is Dr Wright and we can't get in to see him until Aug 1. He will discuss options of medication or possible surgery to fix some of Emma's contractors and over all stiffness. I can't wait to get her seen so we can turn her into a "losey goosey' and move her much better.

Dr Davey also told me to dicuss medication that helps stop drooling with Emma's ped. Apparently there are a few that might help with all her bubbles and drooling. They usually have side effects like dry mouth and digestion problems. So we will see what he wants to do, they are closed for lunch right now or I would be on the phone asking about it.

Emma sat outside while we waited for the medical van to pick us up and take us home. We had some shade and a good breeze. She liked it, we sang songs and watched all the birds fly by. I think her favorite was this little orange-red bird we saw. She sure had fun being outside.

Walk America 2006

Yesterday Emma and Ella as well as myself and my twin sister took part in Walk America for the March of Dimes. Our team so creatively named "Double Trouble" raised $304 dollars. Emma went and it was her first big outing. Despite the 100 degree heat she stayed cool in the shade and had a fun time. She likes getting attention! Boy did she ever get a bunch. They announced the girls names on stage and they got to walk across and get clapped for. They walked over a small bridge in the park called the "Bridge of Miracles" and I almost cried when I realized people were standing and cheering for them and the other preemies. What a great day.

Hospital Trip UGH!! May 1st

Sorry I have not posted earlier on this topic, as I just really didn't know what I wanted to say about Emma's trip to the hospital. In the evening hours of May 1 Emma started having labored breathing. She is normally on no oxygen and I had to crank her up to 4 liters to get her to stay about he oxygen saturation the doctors wants her at (92). For those of you who don't know about oxygen and what not, 4 liters is a bunch for Emma. She usually gets about a half liter when she is sick and that is it. I called her doctor and he said that it would be a good idea to get a chest x-ray. We rode by ambulance (the easiest way to transport her) to Norman Regional hospital. They started an iv in her little forehead and did an xray. They discovered she had pneumonia. They started antibiotics and shipped us off to Children's hospital in Oklahoma City.

At Children's she continued on the antibiotics through her iv and she required no oxygen her entire stay! What a good girl. We stayed until the afternoon of May 4 and she was sent home on antibiotics I could put through her mickey button. (oral antibiotics)

She is now doing great, a few fevers here and there a week or so ago but doing much better. We went to her regular doctor and he said things look fine. She sees her monologist in early June.She was weighted at her doctor's visit and is now up to 27 lbs 14 oz despite the reduction in her feeding routine. Her nutritionist says we will continue to watch her over the next month or so to see if she evens out and if not make some small adjustments