Thursday, June 29, 2006

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. 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.


Sunday, June 25, 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

Friday, June 23, 2006

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 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 for making the cute little lady bug tag picture of Emma I posted here.

Monday, June 19, 2006

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.

Sunday, June 11, 2006

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.

Wednesday, June 07, 2006

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. GET WELL SOON OLIVIA!!

Tuesday, June 06, 2006

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.

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