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

Updates 4-23-06

Not too much to update but I thought I better post before I forget to mention that we finally got Emma's feedings changed. She was eating every 3 hours all day and night long. To cute some calories they have stopped her 3am feeding. They also added a mult. vitamin to her diet to make sure she gets all the good stuff she needs. She is on scooby doo vitamins right off the grocery store shelf. After much debating we decided that they would give her what she needed better than any prescription kind. She gets a half a pill and I crunch it up mix it with water and push it through her mickey button. I spent the day yesterday at the 89's day parade with my sister, her kids and Emma's brother and sister. Emma stayed home with daddy and her nurse Cindi, it was just way to hot to take her. I took this picture of Emma yesterday afternoon when we got home and thought I would share it with you.

Emma's Equipment

These are Emma's machines. From the left to right she has: A pulse ox machine which tells us her heart rate and the amount of oxygen in her blood. The big one in the middle is her ventilator which helps her breathe when she forgets to. The machine with the clear and blue tubes coming out of it is her heater for her vent. It adds humidity to the air she breathes. The machine on the far right is her feeding pump. It pumps her special milk into her 'mickey button' which is a port put into her belly so we can feed her. She also has a machine that suctions the mucus from her trach and drool from her mouth but its not in the picture because we 'hide' it under her bed.

Update 4-20-2006

Ok I have made a first post with background info now I will begin to post updates for all of you to check on Emma. I will try to get one on weekly but we will see how that goes. We went to JD McCarthy today for her physical therapy. She did very well. I finally have someone there who is going to tend to her nutrional needs. They kept sending me to one doctor and then another and another and no one cared she was getting to big! She is 27lbs 4 oz right now. They are going to change her food and start to weight her more often. She did a wonderful job at therapy and didn't even fuss at her therapist Amy. SHe slept through about half of it. They are working on getting her a neck brace that will fit her and help her hold her head straight, since she favors her right side. We saw Dr. Fields yesterday (her main doctor) and he gave me some eye ointment for her matting eyes and told me to use some cortaid on her check where I think she might have eczema or something. We will see how that works. She is sleeping in her chair now with her cabbage patch doll. She is worn out from her PT. I just want it noted here that taking care of Emma is so fun and I love her so much. She is such a blessing and everyone that has the chance to get to know her would agree. She is perfect.

Background info on Emma

Hmm...what can I say about my darling girl Emma. She was born Oct 16, 2004 about 10 seconds before her twin sister. I found out at 8 weeks I was having twins. They thought they were conjoined but they ended up being something called monoamniotic monochorionic twins. That is a fancy word for saying their was no membrane seperating them and that they shared a placenta. It was a high risk pregnancy, because it put them at risk for cord entanglement and something called Twin to Twin Transfusion. I went into preterm labor around 25 weeks but thank God the girls made it to 31 weeks. Emma was 3lbs 6 oz and Ella 3 lbs even. They were both 15 inches long. Emma suffered a lack of oxygen due to cord entanglement and suffered brain damage. She has since been diagonosed with cerebral palsy. She has no swallow or gag reflex. She can not roll over, sit up or do things a "normal" baby can do. She was given a trachestomy in her neck to help her breathe and a feeding tube to help her eat on Dec 13, 2004. She came home for the very first time about a week after that. She kept having problems breathing, she would just forget to breathe sometimes so on June 8, 2005 she was put on a ventilator and sent home July 5, 2005. That has made a world of diffrence. She has been home with us ever since growing like a weed and making each day more special for us than the day before.