Molly is having a ball with a tea party right now and her vocabulary is cracking us up (and shocking us).
Here are some of the gems:
Would you like some tea M'am?
Would you like to join my tea party Daddy?
I forgot the tea, didn't I?
Please put the cup down on the plate when you're finished.
Do you like butter in your tea?
Can't we separate the utensils?
You separate the forks and I'll separate the spoons.
That's an important thing, isn't it?
Would you like some tea Howie?
It's a little big, so we need to cut it.
We need to finish drinking before it melts.
Molly was born on 1/13/06 with Type III Osteogenesis Imperfecta (Brittle Bone Disorder). I have created this blog to share our ups and downs with friends, family, and others in a similar situation.
Sunday, December 28, 2008
Friday, December 26, 2008
"Just" a Fracture
Good news...
We went to an Urgent Care Clinic today to have X-rays taken of her arm. Her right Radius (or whatever the bigger bone in the forearm is) is bowing up towards the elbow and she might have a new fracture in her Humerus just above the elbow, but the good news is the rod looks good!
We are relieved that Molly gets a break from the hospital life.
We have had a nice time spending the week here in St. Louis, but we are relieved to be heading home tomorrow and not to Omaha.
We went to an Urgent Care Clinic today to have X-rays taken of her arm. Her right Radius (or whatever the bigger bone in the forearm is) is bowing up towards the elbow and she might have a new fracture in her Humerus just above the elbow, but the good news is the rod looks good!
We are relieved that Molly gets a break from the hospital life.
We have had a nice time spending the week here in St. Louis, but we are relieved to be heading home tomorrow and not to Omaha.
Thursday, December 25, 2008
Merry Christmas From the Sullivan's!
Merry Christmas!
We have had a fun day with Molly. It was definitely "The Year of the Princess". She was most interested in the Sleeping Beauty related toys, but also really enjoyed the process of opening the gifts.
We baked cookies for Santa yesterday and left out carrots for the reindeer. She slept until almost 9:30 and then was ready to eat chocolate and open presents! She had lots to open and got a bit overwhelmed and so we held off opening the rest of her presents until after dinner.
She is complaining of pain in her right arm (the one with the rod) and we are going to go and get an x-ray tomorrow to make sure that the rod isn't migrating into her shoulder or elbow. The rod has compressed as much as it can, so there is a risk that it could end up going through one end or the other. She asked for her splint on yesterday and the day before, but then didn't want it today. She has been a bit fussier than usual, but at the same time is using her arm more for things like writing and eating etc. We're hoping to find a place other than the ER to go and get an X-Ray to send to Dr. Esposito. We are supposed to go back to NC on Saturday, but if it didn't look good we could change our flight home to next week and drive to Omaha to have Dr. Esposito fix whatever is going on. Keep your fingers crossed that things look good and it is just a false alarm!!
Here is a link to photos from Christmas CLICK HERE
Gram, Jim and Molly at the Butterfly House here in St. Louis:
Sunday, December 07, 2008
Nice to Be Home :)
It was a long 11 days living out of a suitcase and Molly and I were very happy to be home.
It was difficult being away from Jim, but thankfully I had Jim's family to help.
Molly has been doing remarkably well. She has shown no signs of needing medicine and is now using a cuff splint and nothing else!
She has had a little bit of diarrhea this week. We're not sure if it is due to the IV antibiotics or something she picked up in the hospital. I'm sure it will pass soon. We are just so grateful that she is doing as well as she is. She is cruising around all of the furniture and even cruised down the hall yesterday.
She continues to be obsessed with princesses and introduces herself as one of them at least half of the time. She asks questions like, does Cinderella/Sleeping Beauty/Ariel take baths? Does (insert princess) wear dresses? Do they take off their shoes? Do they wear barrettes? etc. etc.
It was difficult being away from Jim, but thankfully I had Jim's family to help.
Molly has been doing remarkably well. She has shown no signs of needing medicine and is now using a cuff splint and nothing else!
She has had a little bit of diarrhea this week. We're not sure if it is due to the IV antibiotics or something she picked up in the hospital. I'm sure it will pass soon. We are just so grateful that she is doing as well as she is. She is cruising around all of the furniture and even cruised down the hall yesterday.
She continues to be obsessed with princesses and introduces herself as one of them at least half of the time. She asks questions like, does Cinderella/Sleeping Beauty/Ariel take baths? Does (insert princess) wear dresses? Do they take off their shoes? Do they wear barrettes? etc. etc.
Tuesday, December 02, 2008
Out of the Hospital - In the Hotel!!
Wow! This has been such a different experience. She was uncomfortable last night, but she didn't have a sling (she refuses) and so we brought out the splint we used when she first fractured the arm. It made a HUGE difference! She was feeling so much better within a few minutes that she asked for food and ate an entire dinner! She had morphine before coming up to the hospital room floor, but never needed anymore after that point. Hooray.
She was well managed with just motrin and Tussionex (hydrocodone).
We checked out of the hospital by 9 this morning and didn't know what to do with ourselves! She is still having some pain both in her legs and obviously in the arm.
She and I took a 3 hour nap this afternoon and felt much more human after that.
We are back in the hotel and Molly is happily playing.
If things continue as they are right now we will be heading back to St. Louis tomorrow morning.
Hip Hip Hooray!
Surgery update, 12/2/08
I just got a call from Sarah, and Molly is doing well today. She is doing so well that they are planning on leaving the hospital later today.
Sarah said that Molly did get some sleep through the night, and they put on a new splint today that has been working well.
Jim
Sarah said that Molly did get some sleep through the night, and they put on a new splint today that has been working well.
Jim
Monday, December 01, 2008
In the Hospital 12/1/2008 - with updates - arm is rodded
12/1/08 1:25 pm (Central Time)
She was a bit feisty about accessing her port, but other than that things have gone quite smoothly. The staff here is so wonderful. I feel very lucky to have a wonderful surgeon and staff all at the same place - too bad it's all the way in Omaha!
There will be a nurse coming out to give us updates as to when the surgery starts and how she is doing throughout and I will update you as I get updates.
Thanks to all for thinking of Molly and hoping for a good outcome.
They are going to take X-Rays of her legs while they are in there, to check on the fractures she has had this past week. He could feel bowing in her right Tibia right down at the ankle. He thinks we won't do anything about the legs today in hopes we can get some more time out of the current rods.
Thats all for now...
3:05 (Central Time)
Dr. Esposito came out to talk about how her leg X-Rays looked and we needed to make a decision about whether or not to rod her left Tibia. The rod i snot "seated"/fixed at the bottom, which means the rod will not telescope. It is also bowing where the male and female parts meet (just below the middle of the bone). The rod is quite close the bone in the front and will eventually break through the bone, at which time it will need to be replaced. We debated replacing this one rod, but both Jim and Dr. Esposito feel it is reasonable to wait. Her left Femur is bowing and those rods are now almost 2 years old. We may need to replace the one rod in 3 months, or we might be able to wait a full year before she needs another surgery. If we are able to wait a while longer we would most likely replace all 4 leg rods at the same time. I am feeling a lot of ambivalence about this decision, but in the end we respect Dr. Esposito's opinion and his recommendation is that we can wait.
Here's hopin'!
I'll be heading out to be with her and will try and post soon.
Sarah
Thanksgiving
Molly had a wonderful Thanksgiving in MA with my family. There were lots of cousins, grandparents, great Aunts and Uncles, Great Grandparents, and one Uncle there to shower her with lots of love. She was giddy with excitement over being around so much family, which was fun for all of us.
One of my cousins has two boys, Jackson (5) and Parker (2), which was really fun. Jackson and Molly had fun playing together and I know Parker will be old enough at the next gathering to play with them as well.
Unfortunately she had 3 fractures in one day (Wednesday), which was emotionally very draining and sad to see her in pain that many times in one day. She was walking really well on Tuesday and Wednesday day, but after the fractures she stopped standing all together.
We arrived in St. Louis on Saturday. I flew with her by myself for the first time and it went fairly smoothly. Molly had fun exploring "Gram and Papa's" house and dancing to Uncle Mike's guitar playing.
We packed up the car yesterday and made the 7 hour drive here to Omaha. Molly did INCREDIBLY well given all of this travel, which we are very thankful for.
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