Monday, September 29, 2008

Creative at bed time

Molly is always coming up with new ways to lure us up into her room when she is in bed.

Tonight it went something like this:

Molly, over the monitor: "Mommy, I need you to come get me."

Sarah, from outside Molly's room : "Go to bed, I'm not coming up there."

Molly, over the monitor, expressing surprise: "Hey, Mommy, I just heard you. I could hear you in here. I heard what you said."

And then, with a captive audience, Molly went for the kill: "Mommy, my sock came off, and I can't sleep without it. I need you to put my sock on. Can you hear me Mommy? I need you to put my sock on."

- Jim

Sunday, September 28, 2008

Teeth are better, but fractured her left leg...

It has been a long week and a half getting Molly back to herself. She was fussy for longer than we had anticipated, but things look like they are healing nicely. She seems to like her new teeth and asks to see her shiny teeth in the mirror. She has a couple of red spots on her gums that we need to keep an eye on and may need to have looked at, but not yet.

I got her a new kitchen this weekend at a yard sale and she has been loving it. While she was playing with it today she slipped and has fractured her femur. The rod seems to be doing a great job of splinting it and so far all we have done is ice it and given her motrin. She has not tried crawling or standing since it happened, so we will see how things go. It is so hard when things are going so well and something as simple as a little slip can cause her so much pain. She is in good spirits and continues to be a fairly happy little girl.

She continues to shock us with the things that she remembers... today she found a plastic egg and talked about when we went for the egg hunt in the Spring. It was Jim's birthday last weekend and we talked about what we would do for her birthday and she blurted out... "my birthday is in January", which took us completely by surprise. She is now also telling people she is 2 and a half when asked how old she is, which I think is adorable (I admit I coached her on that one).

Monday, September 22, 2008

Before and After Pictures



Here are some before and after pictures of Molly's teeth. We will be getting one of all of her metal "princess" teeth when we find a moment...

Friday, September 19, 2008

Princess Teeth

The first night was a long one. She was up around 10:30, at which point I just brought an aerobed in thinking that would make her less fussy, but nothing seemed to help. She was up several times and at 3:30 was bouncing in her crib asking to go downstairs. We were able to keep her in her crib until around 6, but there was a lot of awake time throughout the night.

Yesterday was OK, but a very long day. It is hard to know what is causing her to be irritable and tired, but it is some combination of the anesthesia, discomfort of her new teeth (and inflammation of the gums), and the cold she still has. Jim stayed home yesterday, which was a big help. We gave her more pain medication last night, which seemed to help a bit. She woke up a couple of times, but only for a few minutes.

She finally got a look at her teeth today and said that she likes her "shiny" teeth :). Hopefully by the time it gets to be an issue with her peers she will be comfortabe enough to handle it. We have told her to tell people they are her "princess teeth" when they ask... hopefully this will be sufficient for now.

She is still whining a lot, but seems much better today. She said it feels better to eat, but complained that her teeth hurt when trying to eat a pear from the fridge - it will take us a while to figure out what works and what doesn't with a mouth full of new teeth.

Wednesday, September 17, 2008

Doing Much Better :)

Molly woke up after 2 hours of sleeping when we got home!!  She seemed MUCH better.  Hooray!  She is still quite fussy, but seemed much more herself.  She wanted popsicles and went on to eat many as a "first course".  A few hours later she was asking for food - a very good sign.

She is still very tired and was asleep before I even left her room tonight.  

She said her teeth felt good while she ate... time will tell.  We haven't gotten a good look yet at how her teeth look, but we're happy to think she is going to be able to have an easier time eating :)

Successful Surgery - We're already home

Molly is still asleep in the car, but we are home. The surgery went well and the staff was extremely sensitive and cautious with their care of Molly. We gave her Versed (which makes her a bit dopey and helped get her into the OR with minimal drama. She definitely remembered her last surgery and said "this is a different 'hosipal' (hospital)". They let me bring her back to the OR and she did cry a little as we left Jim. They had me hold her as they put the mask on to put her to sleep. Very odd being there as they did this. I then placed her on the operating table and everyone assured me they understood the concerns of handling someone with OI.

It was a little over 2.5 hours after that that they came to get me. She woke up feisty and asking for me. It was hard going back to recovery. Her face was puffy and her lips and mouth area are swollen and a bit bloody. She was crying/fussing and a bit ornery. They gave her some medication and she settled down quickly.

She told us she hurt and was very fussy. We got her to take a few sips of juice, so they started the discharge paperwork. She fell asleep on the way downstairs, so we are hoping that a lot of her fussy behavior was just the fact that she is tired. We will see when she wakes up. The top front 4 teeth are white, but the rest are all metal. I haven't had a chance to really take a look, but it was hard to see so much metal in her mouth. I hope that it won't look too strange - especially to her peers. They told us she can get white ones when she gets older if she feels it is important. At least she should now have functioning teeth! I think this is going to be a big improvement for her.

We will keep you posted. Thanks for thinking of her today and wishing her well.

Tuesday, September 16, 2008

Surgery Tomorrow - Wed. the 17th

Molly is scheduled for her dental surgery around 10:30 tomorrow morning. We are all quite stressed to be putting her through another surgery, but we know it is necessary. She complained of her back molars hurting when she was eating, which just makes us feel that much more confident.

We took some pictures this evening of her teeth and will post them - probably after the surgery as a before and after. Her top front will be white and he is going to try and make the bottom front white as well, but the rest will all be metal. It will be such a big improvement from her current teeth that some metal in her mouth isn't such a big concern.

She has a cold now, which has had me nervous - I don't want them to have to postpone, but I think it will be OK. I have been giving her as much Jello, popsicles, and juice boxes as her little body can handle in hopes of keeping her cold under control. Yesterday she had had enough Jello and starting playing with it... I decided to let it go and let her play a bit... next thing I know she is saying "look Mommy... lotion" and is smearing red jello all over her face!! I was worried that she would have a slight red tint that I would have to explain, but it wiped right off :).

We are hoping to be coming home tomorrow night, which will be a very different experience than her last two surgeries. I am hoping she will be in very minimal pain and will be easily distracted with TV and toys, but we will have to wait and see.

Please think of Molly and hope for a successful and uneventful surgery.

I think she knows that something is going to happen, but not in any detail. When we went for her last surgery in Omaha we brought Dr. Esposito a couple of "jibbitz", which pop into Crocs (which he wears in the OR). We went to the same toy store today and Molly said - I want to get a present for the doctor - I cannot believe the things she remembers!! Dr. Wright (the dentist) will be getting a Sleeping Beauty "jibbit" tomorrow :).

Heading to bed now for an early wake-up.

Monday, September 15, 2008

More pictures and videos

Molly getting ready to help start her infusion at home.

The PVC pipe parallel bars get a lot of use these days. Molly has also grown enough that we are going to have to buy some new pipe to make them taller.

I have finally put up the video of Molly playing in Howie's dog crate.
Click here to see the video

Sunday, September 07, 2008

Pamidronate #16 - Full (Montreal) Dose

"Mimi", Rose-Marie Chiasson (Montreal Shriner's Social Worker), Molly and Me

Molly with Dr. Glorieux

Molly had her 16th infusion and is feeling much better. We spoke with Dr. Glorieux, in Montreal, and he advised s to give her a full dose for the next several infusions to increase her bone density and possibly reduce her fractures. This is generally done over 3 days, but we were able to calculate (with Dr. Glorieux's help) how to give it to her over 2 days instead. She was quite perky after her first day and was so hyper after the second day that she couldn't nap.

She took several steps today without her walker and Jim was able to capture it on video... here she is taking 3 or 4 steps on her own!!!

Molly Walking Video

This evening she crawled into Howie's crate and insisted on having her bedtime books read while inside and continually announced "I'm a dog... woof woof". When Jim took her up for bed she said "Look at my armpit, doesn't it look ticklish" - boy is she good at delay tactics!!

Thursday, September 04, 2008

New Videos :)

It has been a busy few weeks between Molly, her therapies, battling with the insurance company and trying to figure out the right dose for her Pamidronate infusions. She has been fussy the past week or so, off and on, which has certainly added to the challenges. It is hard to know if it is just a new phase of being a toddler, or if she is really started to be uncomfortable (bone pain) because she is due for her infusion.

After A LOT of phone calls I think we have finally gotten unofficial confirmation that insurance will cover the OR, anesthesia and other hospital fees related to Molly's dental surgery on September 17th. I won't breath a sigh of relief until we have it in writing, but we are hopeful that this is the end of this worry.

Molly has been cute as ever and making us laugh and smile every hour. She has started getting off the potty and announcing what her poop looks like. "Look Mom... a hot dog"... "No, I said... it is NOT a hot dog!!", to which she replied "I know, I'm pretending".

She has had a lot of different imaginary friends around lately. There is the purple octopus, Fifi, Peter Pan (who likes to honk the horn when I'm driving), and now an imaginary girl with an orange walker. She has started saying things like "the pretend girl would like some fruit"... She also was up in her crib yesterday, "not napping" and shouting (through the monitor) "Roar... I'm a dragon" and clearly entertaining herself with all of the growling.

Dr. Glorieux, the endocrinologist from Montreal, got back to me today and encouraged us to switch to Zolendronate (another bisphosphonate like Pamidronate), which only has to be given 2 times a year, as opposed to the 4 right now, but we are hesitant to change to something that has only been used for the past few years. We have decided to continue with PAM for at least this treatment, but at his advice have decided to give her a full dose (as opposed to the half she has had for the past year). This will mean she gets the same dosage for two days. I am hoping this will go well and that we will see some changes in her bone density.

It has been stressful for me the past few weeks trying to juggle taking care of her as a parent and taking care of all of the medical concerns that we have hit all at once.

We went to a playground today with her PT and she had a wonderful time and surprised Pam (her PT) and me with all that she was able to do. She is one determined little girl!

Here are several new videos for your viewing pleasure :)

On Safari

Dancing on her parallel bars

Molly and Daddy Together

Flying to the Moon
Driving Her Pink Car