Molly is busier than ever and keeping us on our toes. She is continuing to work on her stair climbing skills and is now also climbing other things in the house. Yesterday, I was in the kitchen with her, turned to get something from a cabinet and turned back to find her sitting inside the open door to the dishwasher. This was a very scary sight and demonstrated that I cannot look away for even a split second without risking her getting into a dangerous situation.
She has started using the word "No" more and more and is definitely a girl who knows what she does and does not want. She loves to pick up her books and babble - we assume pretending to read them - and is working on becoming cuter by the minute. She is also doing a lot of pretend play now and pretends to drink and pour with cups and also is playing with her little figures and doll house etc. What a fun age this is!
We will be going in to have her try out several wheelchairs, which is an exciting and scary step. This will be her chair for the next 5 years, which is quite a long time and a big $5k commitment (most of it paid for by insurance). She will most likely also need a power wheelchair within the next 5 years, but I don't think she needs that quite yet. We still need to research and make sure insurance will pay for both. If not, we need to have insurance pay for the power ($15-$20k) and pay for the manual out of pocket. Definitely something we don't want to learn about the hard way.
She is a very fun little girl and we are having a blast playing with her and watching her grow and learn.
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.
Wednesday, August 29, 2007
Monday, August 20, 2007
A Good Couple of Weeks
We have been keeping busy and Molly has been doing very well. She has started pulling to a stand all by herself! She generally stands for about 30 seconds at a time, but often will get right back up to stand again. She has also mastered climbing the stairs and can climb all the way to the second floor in no time.
We went to Maine last week and had a wonderful time. Molly got to play with other kids and had a ball. My cousins, grandparents and aunt and uncle all came into town for the weekend and it was great for Molly to have so much family around. My cousin has a 4 year old and a 10 month old and Molly loved spending time with them. We went to the children's museum in Portland with another family and Molly got to touch a star fish and some other sea creatures, which she seemed to enjoy. They had a toddler area she got to explore and she worked on her stair climbing skills.
She got to see the ocean for the first time and we went out on the boat with my Dad and watched him lobster. She would say "more" after he pulled up each trap :).
We have been back in NC for a week and my Mom has been in town to help and give Jim and I a chance to get out together. It has been outrageously hot (100+), but we have had a good week. I have been spending a lot of time researching equipment for Molly and I think we are getting closer to know what will be best for her.
We met up with another family last week and their 5 year old let Molly try out her manual wheelchair. She was able to go all around the mall with no assistance, which was fun to watch. We went to our first LPA (Little People of America) event on Saturday and got to meet a lot of nice families. We met in Roanoke Rapids and families within a two hour radius were there. There was a wide age range, which was fun to see. There were a couple of young kids and it was nice to talk with the parents and we are hoping to meet up on our own in between events.
We have a gait trainer, which is similar to a walker, that we have been trying out the past couple of days. It has wheels that can swivel all around and a harness that she can sit down in when she gets tired. It has similar functionality to an exersaucer, but is better for Molly's legs. We are hoping that this will help move us down the path to walking - we will keep you posted!
Molly has started giving us "attitude" and has lots of new facial expressions she has been trying out:
Here she is climbing the stairs - frightening, but exciting :)
Molly has lots of hats, since she is in the same clothing from last summer (3-6 months and some 6-12) I find myself buying hats to have fun playing dress-up with her:
Here we are out lobstering with my Dad on a beautiful day in Maine - I miss it already!
We went to Maine last week and had a wonderful time. Molly got to play with other kids and had a ball. My cousins, grandparents and aunt and uncle all came into town for the weekend and it was great for Molly to have so much family around. My cousin has a 4 year old and a 10 month old and Molly loved spending time with them. We went to the children's museum in Portland with another family and Molly got to touch a star fish and some other sea creatures, which she seemed to enjoy. They had a toddler area she got to explore and she worked on her stair climbing skills.
She got to see the ocean for the first time and we went out on the boat with my Dad and watched him lobster. She would say "more" after he pulled up each trap :).
We have been back in NC for a week and my Mom has been in town to help and give Jim and I a chance to get out together. It has been outrageously hot (100+), but we have had a good week. I have been spending a lot of time researching equipment for Molly and I think we are getting closer to know what will be best for her.
We met up with another family last week and their 5 year old let Molly try out her manual wheelchair. She was able to go all around the mall with no assistance, which was fun to watch. We went to our first LPA (Little People of America) event on Saturday and got to meet a lot of nice families. We met in Roanoke Rapids and families within a two hour radius were there. There was a wide age range, which was fun to see. There were a couple of young kids and it was nice to talk with the parents and we are hoping to meet up on our own in between events.
We have a gait trainer, which is similar to a walker, that we have been trying out the past couple of days. It has wheels that can swivel all around and a harness that she can sit down in when she gets tired. It has similar functionality to an exersaucer, but is better for Molly's legs. We are hoping that this will help move us down the path to walking - we will keep you posted!
Molly has started giving us "attitude" and has lots of new facial expressions she has been trying out:
Here she is climbing the stairs - frightening, but exciting :)
Molly has lots of hats, since she is in the same clothing from last summer (3-6 months and some 6-12) I find myself buying hats to have fun playing dress-up with her:
Here we are out lobstering with my Dad on a beautiful day in Maine - I miss it already!
Wednesday, August 01, 2007
Photos Galore
Jim's Mom (Gram) was just here for a visit and Molly had a wonderful time. It had been a couple of months and Molly recognized her right away! It was good to see her comfortable with someone other than Jim and I
She has been crawling and "climbing" around like a mad woman. She has started crawling up and over things back and forth repeatedly and seems quite proud of herself. It is scary, but once she has done something a few times I feel more comfortable backing off and letting her explore. It is hard to find a balance between protecting her and letting her develop.
We went to a music class today to see if it she would enjoy it and she LOVED it!! At the end of each song she would say "more" - it was so cute. She wanted me to pick her up to dance and she even played the instruments. We have signed up for the classes for the Fall and I am really looking forward to having an appointment that isn't therapy and a place where there will be lots of kids for her to watch and hopefully play with. She has become very interested in other kids and I am trying to find a few kids that we can get together with.
There are a ton of new pictures posted online CLICK HERE to see them.
She is slowly using more of her words spontaneously, mostly food related :), and seems to understand a tremendous amount. Our PT and one of our water therapists are on vacation and it has been so nice this week not having to drive out to UNC (1 hour each way). I am going to have to find a way to find someone to come to us or simply cut down on her appointments. She has been pretty good lately at pushing her limits all by herself.
She still is not wanting to stand for any prolonged period (only a few seconds at a time), but she seems to be doing OK otherwise. She has her next infusion at home this weekend and hopefully that will go smoothly with our insurance. We got a letter stating that it would be covered, but until it has actually been submitted and paid for I won't rest easily.
Subscribe to:
Posts (Atom)