Thursday, November 29, 2007

A Very Busy Couple of Days

We found out on Monday that we had a hearing today to try and get some State services for Molly. The letter somehow got misfiled here and so I didn't have a lot of time to organize us for the meeting. I got Molly's PT to write a letter, the pediatrician to write a letter and then I went and had a bunch of photos printed of her medical related experiences. I then went to Staples and made copies of everything in her file folder that I thought might help our case. Yesterday we went to the pediatrician to pick up the letter and show off Molly's new potty tricks.

Today was the hearing and I didn't know what to expect. We had been told this meeting probably wouldn't happen for a year or so, so I was not at all prepared when I found out on Monday. There were two women there who made the decision to deny Molly CAP/C services, the court appointed person running the hearing and a nurse that had come to the house back in June to do the in-home evaluation. They read through a bunch of pages filled with all of the reasons they felt that Molly didn't qualify for services. CAP/C is a program for Medically Fragile children, something I would have thought Molly was the poster-child for. In their terms it means a child that either has a need for continuous nursing care or who requires care that is not "age appropriate". The women who made the initial decision were like the "ice queens" and showed no compassion or interest in learning more about Molly, which made it difficult to stay composed.

I felt like the final decision had already made and it didn't matter what I said. We will hear in the next 60 days what the official decision is and then we can appeal that decision or apply for another in-home evaluation and start the process all over again. It is hard not to think about what our lives would be like if there was someone here on a weekly/daily basis to give me help with Molly. That person would also offer 20+ hours a month of respite care, which would allow Jim and I to go out by ourselves on a regular basis.

Once the hearing was over we headed to the pediatrician's office to get a weight for Molly's Pamidronate infusion on Saturday.

The toilet training has been a challenge and we have had almost an equal share of on the potty and in the pant experiences. All but one of the poops have been on the potty, which is a HUGE accomplishment!! We are sticking with it and hoping it will get better soon. Right now she generally says she does not have to go and some of the time is happy to go on the potty anyway and other times is rather resistant. We are making progress and I think that is all we can expect at this point.

Friday, November 23, 2007

Lots of Success Today!

We have had a great "potty" day! We brought her big plastic potty with us today to Toys R Us and a restaurant and she went in both locations. We only had one miss this morning and one while we were out. We were just about to take her to bed and she announced "wee wee" and within a very short period she went! We started the bedtime routine again and then she announced "poop" and again she went within a very short while. Wow, I can't believe she is taking to this as well as she is. We shall see if this will continue or if we will have to revert back to diapers.

We also bid on a wheelchair on ebay and won. It is a risk buying a wheelchair sight unseen and even more so buying one on ebay, but we decided it was worth the risk. I am excited to get it and will keep you posted.

Potty Training

Wow, Molly pooped on the potty yesterday for the first time. We also went out and Molly picked out big girl underwear!! We were not at all prepared to start potty training, but we're going to give it a try. We started her in underwear yesterday and I think we changed about 6 outfits, but also had 3 successes.

She still seems interested in sitting on the potty (like her friend "Livie"), so we're going to give it a try. We give her a piece of maraschino cherry when she goes on the potty, which is the ultimate treat according to Molly. She also seems to think she should get a cherry for passing gas on the potty :)

Jim's parents arrived yesterday afternoon and we had a nice Thanksgiving feast together. Molly loved the sweet potatoes.

Tuesday, November 20, 2007

A BIG Day!!

Molly went "wee-wee" on the potty for the first time tonight!! I bought one a couple of months ago and she has been sitting on it and playing around with it. In the past couple of weeks she has asked to "poop" on the potty right after going in her diaper and would cry when I insisted on cleaning her up before putting her on the potty :). The same thing happened this evening, but she was more insistent and had had a lot to drink, which helped. I don't think she was really aware of when she actually went, so we'll have to see how things progress.

She also stood in the pool today unsupported and took a step or two without holding on to anything, which was also a very big step.

She has started stringing even more words together and has now said "I love you Daddy", "I got it" and when I told her something was mine she then said yours! She is developing at lightning speed these days!!

Thursday, November 15, 2007

Walking and Talking Oh My!

Molly is doing well. She is suddenly having rapid development with verbal communication and has become quite the little parrot. She is repeating almost everything we say. Her favorites are: "Mama/Dada Sit", "Beep Beep Howie" (while she drives her cars around the house -regardless of whether Howie is in the way or not), "Here it is", "I See You", and "Da da da Dora" (her favorite show).

She started counting today for the first time. She looked at Jim and counted 1,2, 3 with her fingers, but then wouldn't/couldn't repeat it. She counted some toys as she put them in and out of a box, but used jumbled the numbers 1-6 in random orders :).

We are hoping to get everything together tomorrow so that we can submit our request to the insurance company for Molly's wheelchair. It is hard having to wait until they approve it to go ahead and order it. We are preparing for the fact that they are going to deny our first request and that we are going to have to submit multiple applications. I know it will all be worth it in the end :). Here is a video of her driving the chair at the hospital. Her first real indoor trial:

We met with another OI family yesterday with a 9 month old and had a nice time. We met at the Mall and Molly got to see Santa for the first time. She was a bit hesitant, but was willing to ride up to him since he had a stuffed reindeer she could pat. She also got to ride her first carousel (on a bench not a horse) and loved it. I wish I had remembered the camera :(. While we were in the mall she asked to walk, I hadn't brought her walker with me, but she walked holding my hands all around a couple of stores. I was amazed at how much she did. Today was no different! We went with another little girl and Molly walked all around the store. I was amazed!

Molly has her first chore: to feed Howie. Here is a video:

Monday, November 05, 2007

Miss Independent

Molly drove herself to the backyard to play in the sandbox. It is so fun seeing her have some independent mobility outside of the house.

We had a great time this morning with her powerchair. She was driving all over the yard and then insisted that we drive around the neighborhood. This was the first time (out of the house) that we have had experience with her going somewhere other than where we took her or told her to go. She really seems to understand the independence the chair gives her. I would ask her to go in one direction and she would decide she would rather go somewhere else. It was tiring, but wonderful. She drove the farthest she has ever gone by herself.

Here is a video of her in the two chairs (we are going to submit this to her insurance when we order the chair) CLICK HERE.