Saturday, June 30, 2007

A Great Success

We had our North Carolina OI gathering Saturday and it was a big success! It went far better than I would have ever imagined. We had 9 families here and everyone seemed happy to get together. We are exhausted after having so many people in the house, but we are so glad we got everyone together.

There were so many kids with OI here and I think they all really enjoyed being around other kids like themselves. There was a 7 year old girl here who seemed especially excited to meet other kids with OI. Molly got to play ball with some of the bigger kids and really seemed to enjoy that :). There were a couple of older people in power chairs that came and Molly was instantly comfortable interacting with them, which was fun. I will include a link to a folder of photos from the party. Click Here to see the pictures from the party

Here is a picture of us wishing Alexi a happy birthday.
In front around the table from Left to Right: Becky, Tabytha, Aubrey (no OI), Amanda, Meghan, Alexi (birthday girl), Avery, Aidan (no OI), Alec (no OI), Devin (no OI), Max (no OI). In the back row from Left to Right: Connor w/ mom, Abby w/mom, Molly w/Jim :)

Here is Meghan (4 years old) showing off some of her ADORABLE personality, with Connor (14 months old) in the background - notice the toy disaster thanks to so many kids!!

Becky (21), her mom Grace, and Amanda's Mom Marcy:

Max (no OI), Tabytha, Rob (Amanda's Dad), and Amanda (10):

Connor w/Mom, Abby (6 months old) w/Mom and Molly w/Jim:

Amanda, Aubrey (no OI), Meghan, Chloe (7), and Tabytha playing ball together on the floor:

Thursday, June 28, 2007

A Good Report

"I didn't put the marker in my mouth" :)

This is the first time I asked her to smile for the camera and she actually did it!

We went to UNC today to meet talk with the metabolic dentist about Molly's teeth. I was prepared for the worst, and have been anxious about the appointment all week. He noted that her bottom two teeth are wearing down, but not to the point that he is concerned as of yet. He also said that the nerve recedes faster than the tooth wears down, so he did not feel that they would be painful even if they wear to the gum line. Whew! It does seem reasonable for us to start saving for her teeth, but hopefully we will be able to wait until all of her baby teeth are in (sometime after 2 years old) to do it. The goal is to wait and do them all at once because she has to go under general anesthesia so we don't want to have to go through that process too many times. Insurance should pay for the anesthesia and hospital portion and dental may pay for the capping, but from what I've heard that is not likely. It cost somewhere between $5-6k, which is better than I had heard, but still A LOT of money!! Even still I walked away feeling better than when I walked in. We are going to research finding financial assistance and hopefully will find some resources before she needs the work done.

We are still battling with the insurance company regarding her Pamidronate coverage. We don't seem to have made the right contacts, which I think is a major part of the problem. Most insurance companies assign you a Case Manager, but so far we haven't been able to get this with United Health Care. They have been paying for most of our requests in the past year so we haven't been overly concerned, but now we are scrambling to get this resolved without a lot of help from them. We are starting to look into ordering her first wheelchair and from what I understand it will take 3-5 months for them to process and approve that, so we are about to learn all about how to "work" with them.

We are also getting ready for our OI gathering on Saturday. We are so excited to get so many families together. It should be fun and educational for all of us.

Jim will be working to get some new pictures (and possibly video) up online soon.

Thursday, June 21, 2007

Little Miss Smarty Pants

Molly is now officially a toddler! She is everywhere and into everything. She is getting more advanced by the hour. It is amazing to watch. We put on a "Baby Einstein" video tonight and I was amazed at how much she was saying and signing. She was saying "kitty", "bowl", "cup", "table" and a few others and was also signing for refrigerator and telephone. Her vocabulary seems to be going through the roof!

We have been using her "Star Car" (pre-wheelchair) the past few days and she is able to go several feet with it. I stand in the back to help steer and she can go all around the room. I think she is definitely close to being ready for her own wheelchair. It would be wonderful for her to be able to explore places that we go outside of the house.

Two of her bottom teeth are about half of how big they used to be. I hadn't been checking on them like I guess I should. We have an appointment to see her metabolic dentist next week. I am dreading the meeting because I am worried he is going to suggest we consider capping her teeth. From what I have heard this is a $10-$20k process and isn't covered by dental or medical insurance.

We also received a letter from our insurance company yesterday telling us that they consider her Pamidronate infusions to be experimental and will no longer be paying for the treatments. This makes my blood absolutely BOIL! This was after having no problems with 9 infusions that were costing them about 10 times as much as the at-home infusion. We have asked so little of them and I am infuriated that they can do something as cavalier as to send an impersonal form letter stating that the treatment your child so desperately needs will no longer be paid for. We are already working on collecting documentation to provide them with to show that Pamidronate is an accepted and necessary treatment for OI. The nurse in Omaha assured me that she has never encountered an insurance company that refused to pay for PAM treatments, which has given me at least a little peace of mind.

So it is definitely a mixed bag at our house, but I am happy that Molly is doing so well and developing so quickly.

We are trying to arrange an OI gathering here at our house the weekend after next and are happy to have had a better response than we expected. I didn't know how many families I knew, or at least knew of, until I started working on this. I think we will have somewhere around 9 families here - hope for good weather or it will be a little tight!! Most of the families seem really excited about the prospect, which is what I had hoped for. It should be a great time for everyone. :)

Saturday, June 16, 2007

A Very Busy Little Girl!

Molly learned a new "game" tonight while crawling around on the floor. She was experimenting on the hardwood floors pushing herself around and then started wiggling around while on her back. Here is a video of her wiggling CLICK HERE

We have applied for a state program called CAP-C, which is for medically fragile children, and a nurse came on Friday for a home visit and to fill out paperwork. The program would provide us with a nurses aid 3 hours a day as well as 20-30 hours of respite care per month. It would also give her Medicaid as a secondary insurance. I am extremely excited about the possibility of this working out, but we are trying not to get our hopes up.

Molly has gotten extremely mobile and active in the past week and it is making for an exhausting day for both Jim and I. We can no longer turn our back or walk out of the room for even an instant. She was sitting on the floor playing while I was going over a typical day with the nurse and she flopped forward and began crying with a terrible cry. I rushed over and picked her up and tried to comfort her and tried not to freak out too much myself. We have learned that she responds to our reaction and if we get emotional it is hard to tell if she is hurt or not. It seems that in this case she was in a bad position, which either scared her, hurt her, or both. It was a frightening minute or two, but thankfully was OK, but made me aware of all of the risks that come with her being so active. It also demonstrated all too well to the nurse what makes taking care of Molly so different than a "normal" child. She promptly made some notes for our application that will hopefully help us to be approved. It is a long shot, but definitely worth applying for.

Life has become much more challenging as a result of her new activity level. She is WAY too young for us to be able to set any sort of limits or to try and plead with her to please not pull up to her knees using a ball or a wicker basket etc. I now have to put her into her high chair to do something as simple as go to the bathroom. I don't feel comfortable even going 20 feet away to the kitchen to get her a drink. I am not enjoying this new phase and I hope that we come up with some solutions to make life a little more manageable.

She is working hard on her verbal and signing communication and has added "please" to her sign repertoire and is making new sounds and "words" every day. She is extremely happy and fun and we are enjoying immensely despite our new found challenges. She absolutely loves music and will often dance to it unprompted.

Molly Standing (with some of her weight on my hand) and checking herself out in the mirror:

Molly at the new water therapy pool we found:

We have been working on having her "stand" on her knees for short periods with good success:

Monday, June 11, 2007

Mobile and Doing Well

Jim has been gone since last Monday and we are ready for him to be home! If all goes well he will be home just before Molly goes to bed tomorrow night.

My Mom and I had a good week with Molly and kept very busy. I came down with a cold that I seem to have passed on to Molly as well, which has made the week feel a bit longer. My Mom flew home Sunday morning and I am flying solo with Molly for the first time! I can't believe she is almost 17 months old and this was my first time going it alone - I've been lucky!

Molly has been getting stronger and more mobile by the day. She is now back to regular crawling (as opposed to her one-leg crawling) and has learned to transition from her belly to sitting and also out of sitting back to crawling. This was a big milestone and one I wasn't sure she would be able to do given her short arms. With the help of her physical therapist we put her into a "tall kneeling position" where her hands were up on a bench and she was on her knees. I was nervous the first time, but she tolerated it just fine. She can't kneel for more than 30 seconds or so, but I'm sure that will improve with time. She has scars on her knees, so this might be part of the discomfort in addition to using muscles she hasn't before.

On Friday we had Molly's first at-home infusion and it went very well. What a difference from an overnight stay in the hospital! Molly was able to be in her own house and even able to crawl a bit while hooked up to the IV. Her port worked well again and didn't seem to bother her a bit during the treatment. The nurse is very nice and seems to know her stuff, which makes me feel comfortable with the new situation. She became a bit hyper towards the end of the infusion, which is common with the medication. Kids often say that an hour or so into the treatment they begin to feel a lot better. I never would have guessed it could have such an immediate impact.

Dr. Plotkin had his last OI clinic this past week and is now officially finished seeing patients. I am so sad that he is making a change. This is a huge loss for such a small community. It sounds like there is an endocrinologist at the Children's Hospital that is going to take over Dr. Plotkin's position, but that is only a rumor at the moment. I am hoping that they will find a doctor to assume the position so that the clinic can continue. Time will tell.
We have been swimming A LOT. I think we were in the pool with or without a therapist almost every day last week. We have found a therapy pool that I can take her to for just over $5 a visit, so we have started doing that twice a week in addition to meeting with a therapist once a week.

I am exhausted by all of the therapy appointments we have been having and feeling a little down about how much time they take up. We have been meeting with her PT once a week, two different water therapy appointments (some weeks) and now we have a developmental therapist coming to the house once a week. I am hoping that the further we get out from her surgery the fewer of these appointments we will require on a weekly basis.

I am so happy with how well she is doing after the surgery. She seems to be feeling much better than she was even a couple of weeks ago. It is nice to see her mobile again.

She is also saying a few more words and trying to mimic new ones all the time. Most of her words sound nothing like what I'm saying, but I'm sure we will get there :) She now says: Purple, Pool, Woo Woo (for the dog), book, Teddy, Bye-Bye, Mama, Dada, Cah (car), Papa (papaya), Cacker (cracker), and the list is growing by the day.

Molly has been a bit crankier today, I think because of the cold, and bit me for the first time when I was cleaning her up after lunch. She bit so hard that I screamed out and then told her "No" at which point she burst into tears. As I explained to her that it wasn't nice and not to hurt me she grabbed at my face with her nails. She settled down soon after this, but one of my friends said... "welcome to toddlerhood". Uh oh, I didn't think it would start so soon.

All in all she is doing very well and doing more than I thought might ever be possible. I will post pictures and videos soon.

Saturday, June 02, 2007

New Tricks and Toys

Molly is just bursting with personality and has been showing it off all week. We borrowed our neighbor's little push car to see if it would be good for Molly. It is PERFECT for her and she loves it. We walked in the neighborhood and each time we would stop she would sign "more" to get us moving again. She also wiggled and bounced in her seat with pure delight - very cute! We rushed out to the store today and bought her a pink one :)

We also had some fun with her little toy radio that has a microphone. Here is a video of her with my Mom CLICK HERE

My parent's are both here for today and are thoroughly enjoying our little girl. We went to the driving range this morning and they took turns driving her around in the little car, which I think both the "pusher" and the "pushee" enjoyed immensely.

My Dad heads back to Maine in the morning and Jim is heading to CA for a week on Monday. My Mom will be here until next Sunday, so I'll only have a couple of days on my own before Jim is back.

Molly is scheduled to get her infusion on Friday, so assuming they do in fact have the orders right this time she will receive her first at-home infusion. This would be a big step in the right direction for us, so we are very hopeful that it will be a success.