Friday, June 30, 2006

Happy Days

Yesterday was one of Molly's best days yet - hooray for happy times! She was smiling and "talking" for almost the whole day. She took 2 great naps and then a mini afternoon nap, which I'm sure helped with her mood. She is really working hard at trying to communicate and is making more and more "m" sounds and seems to be working on some others that haven't quite come out yet. It is so cute when she tries to talk. It is so nice to have such a happy day after being in the hospital, it shows just how resilient she is already :).

She is getting stronger by the minute and is pushing off of my chest and looking all around. I have a feeling that when I finally start doing "tummy time" somewhere other than my chest that she is going to teeter over and land on her back. We are happy to see her progressing so well and getting so strong.

I love being able to report such happy times - keep 'em coming!! Thanks for taking the time to check in on Molly and the rest of us.

Wednesday, June 28, 2006

On Guard!

We are back from infusion #4 - Hooray! Things went relatively smoothly, but it is always nice to be back home.

Apparently Molly has gotten big enough to have the infusion over a 12 hour (as opposed to 18 hour) period of time, gotta love those small "victories". They put the IV in her head and got it in one stick :).

She missed most of her naps yesterday, which made her a little on the grumpy side - who could blame her? The infusion finished up around 1:00 a.m. and they had to wake her up to do the heel stick. She recovered quickly and went right back to bed. The hardest part was getting the IV and all of the tape out of Molly's hair without pulling it all out - ouch!

I am very sleep deprived after last night and am looking forward to sleeping tonight. We had a minor "incident" when the evening nurse came on shift. While examining Molly she lifted her leg to look at what was written on the bottom of her sock. I panicked and told her that we do not move her limbs for fear of fracture. She didn't really acknowledge what I said, which left me feeling anxious for the night ahead. I later told her that I wanted to be woken up if anything needed to be done. This made for a very restless night. Each time the door opened I popped out of bed and was at Molly's side. It all worked out and Molly is home no worse for the wear :).

It is hard having to explain to every nurse and resident just how fragile Molly is and just how little they can do to examine her. I am hoping that with time we will become familiar with all of the nurses and can be a little bit more relaxed. We are definitely getting accustomed to the infusion process and it is nice to be in familiar territory.

There was a family there with a 2 month old that was just diagnosed with a milder type of OI and they live in the next town. For such a rare disorder we have a lot (meaning 3) of kids in the area. They were in for their son's first infusion, which was a reminder to me about how far we have come. Those first few weeks were like living on another planet compared to where we are now. It has happened rather gradually, but thinking back allows me to see how much better things are now. Hooray for improvement.

Molly seems more determined than ever to talk. She has been so cute. I will be talking to her and she will look right at me and try to make a sound...I'm sure her first word is not far off :) We will try and post a video of it soon.

Monday, June 26, 2006

Molly 1...Parents 0

We had a nice weekend full of happy Molly moments - hooray! We were able to get together with friends and even went out to ice cream with Molly - another first :). She has been quite happy and "normal" lately, which has been wonderful for Jim and me. We tried the letting her cry thing on Friday night and after an hour and 20 minutes we decided it just wasn't going to happen that night. Saturday we tried using the swing for nap times, which worked out perfectly and allowed her to get the sleep she needed. Saturday night was a later to bed (around 9:00), but she then slept for almost 11 hours - WOW!! I think it will take a bit longer before we can put her to sleep while she is still awake, but at least she is sleeping through the night - hooray for all of us!

We are getting ready for her next infusion tomorrow. I always get a bit nervous as I mentally prepare for the sticks and pokes she has to endure. Once we get past the IV and blood tests, the rest of the time in the hospital is rather relaxed. I am happy that we no longer have the big concern of a low calcium level, it is still possible that it could happen, but not likely.

Molly is getting stronger by the day. Her head control is getting better and better and she is able to handle toys with one hand and move them around etc. We are still reading everyday and she is even interested in looking at the pages now and again.

We are trying to set up an appointment with a helmet specialist while we are in the hospital. The back of her head is getting rather flat on one side and there is a slight bulge, so it looks like she is going to need a helmet to help form a rather "normal" head shape. Oh well, as long as it works.

There are two new videos on her website - scroll down, they are the bottom two in the right-hand column - ENJOY!

Friday, June 23, 2006

Asta la Vista Baby

We have had a week full of mostly normal baby stuff, which has been very nice. We officially weened her off of Codeine on Monday - YIPPEE!! This is the FIRST time she has been completely off it since she was 1 month old. This week has been consumed with sleep battles and for the moment... Molly seems to have the upper hand :). It is "nice" to be able to focus some of our time and effort into something this "simple". She has decided that napping is really not her thing. We can get her down, but within 10-30 minutes she is awake and crying. It seems to us that she just wants one of us around. We are preparing to undertake breaking this starting tonight by letting her cry herself to sleep - yuck. Jim has graciously offered to let me get out of the house for these times. We have heard from other parents that within 3-7 days things are much better - here's hoping! The only issue is that we are going to the hospital on Tuesday and Wednesday for her infusion. I don't know how we are going to accomplish the consistency and routine that is required to get her into a good sleep pattern, but I guess we just have to do our best under the circumstances.

I gave her cereal again this morning and she ate the full serving (1/2 ounce or so). I think we are ready to have this be part of our daily routine now - a big step for our little girl :).

I met Jim for lunch today for the first time since Molly was born and it went VERY well!! It has been so nice to have this time full of big milestones and happy times with Molly. We are still on the edge of our seat waiting for the next fracture, but trying to enjoy the present at the same time. With each fracture free period we learn how good things can be, which makes it that much harder to readjust to life with a baby in pain.

The pool was 85 degrees yesterday, which was a lot more comfortable for Molly. I think I caught her enjoying the pool for a moment here and there. She is getting stronger everyday.

It is getting HOT here (90's) and quite muggy as well. People with OI tend to sweat a lot more than normal and Molly is no exception. If she is in her stroller or carseat with the AC she still creates a large pool of sweat behind her head, which makes it hard to take her out in this weather.

I would love to hear from any/all of you, so please post or email me with what is going on in your world. It doesn't have to be anything spectacular, it is just nice to connect with people and hear about things other than OI (which I read all day on an OI forum).

Saturday, June 17, 2006

Big Steps for Molly

Molly has hit some big milestones over the past couple of days. She has now said "Mama" several times and was even witnessed by her PT. She generally says it when she is unhappy and generally hungry, but is a great step in the right direction - hooray!

We gave her rice cereal for the first time this evening and she seemed to get the idea right off the bat. She didn't eat much tonight, but I think we will slowly introduce it more and more. Boy does time fly - I can't believe she is already 5 months old!!

I spent today at the pottery studio while my Mom and Jim watched Molly. I met them at lunch to feed her after she refused to take a bottle - she is quite the stubborn little thing :)

My Mom flies out Sunday morning to head back to Maine. It is nice having her here, so it is always hard to have her go. We will all be meeting up next month for the conference, which makes it all a little easier. We are so fortunate that she has been able to give us so much time and assistance.

Thursday, June 15, 2006

A Worthwhile Trip

We are back from MD and still processing the trip. Molly was such a trooper in the car - WAY better than I ever anticipated. We only stopped once on the way to Bethesda. We spent Tuesday night with the Gertzman's and had a nice evening visiting. Molly was a champ and went to sleep at dinner time - allowing Jim and me to eat at the same time!! We got up at 5:45 Wednesday morning and headed to Baltimore. Our first appointment was at 9:30 with Physical Therapy.

Tracy, the PT, was extremely nice and gave us lots of pointers on what we should be adding to our daily routine. I asked how many OI babies she had worked with, and was extremely disappointed to learn that she had worked with very few. We left that appointment to find some lunch and I found myself getting very down. I was so surprised that at a center that treats so many kids with OI that they did not have more experience with PT for babies. If they don't have the experience, then who will?

The PT also mentioned different adaptive equipment that Molly may need down the road, which reminded me that we won't be "flying under the radar" once she outgrows the stroller. I dread having to endure people's stares and questions when this becomes our reality.

I have spent so little time with Molly outside of the house that I also got a glimpse of what life with a wheelchair bound child is like. I always thought of most places as being wheelchair accessible. Next time you're headed somewhere, pretend you need a ramp and smooth surface - it is surprising.

Our second appointment was with the orthopedist. We liked her right off the bat. She was up front, frank, and bright. We discussed rodding, a procedure where they insert rods in the bone to straighten and support, and it seems that she will have them in both upper and lower legs. This was the first time that we got straight forward answers regarding Molly's course of treatment. Molly's fracture rate and bone deformity will dictate when she has surgery, but sometime between 12 and 24 months will probably be the right time.

Next we met with the endocrinologist to discuss Molly's infusions. At the end of this appointment it became clear that we have been on the right path and that it is not an exact science. We have some new questions to research and more confident about our current treatment plan.

We got some good news about Molly's severity at these appointments as well. We were under the impression that she was on the severe end of the spectrum. They said that her X-Rays looked good. She has thin bones and deformities where she has fractured, but that they sometimes see odd bone formation with the most severe cases. It was nice to hear that Molly may have a better prognosis than anticipated.

It was a very worthwhile trip. We are still processing all that we learned. I am excited to go to Omaha and learn even more and also to filter it all through the other parents and their experience.

We headed home around 7 pm last night and arrived in Cary around 1:00 am. A long trip, but we got it over with and Molly slept most of the way. I am hopeful that she will travel this well next month.

This was a week full of big steps. We bought a convertible car seat, aka a "Big Girl Car Seat", and put her in her high chair for the first time. She looks so tiny, but also a lot older. She is interacting with her world so much more. It has been a fun transition.

Friday, June 09, 2006

Guess Who??

I was reflecting today on that we have been doing for Molly and I have decided that I am essentially her "general contractor". It is hard because I have no training or expertise to make me qualified for this. I am hoping that the doctor in Maryland might help coordinate her care and take over some of the responsibility. It would be nice to have someone with more experience leading this quest.

She is getting stronger it seems, or I'm at least feeling more comfortable handling her. We put socks on her for the first time in several months - a big step :). Her ankles are so weak and angled that I had been nervous in the past. I am hoping that my new view of her limitations is accurate and not just me being optimistic.

Up until recently, I was washing anything that touched the floor - even the carpet in our own house. I am finding myself relaxing about a lot of these things. I'm guessing this is because she seems older and more resilient. It is a nice place to be.

We are thinking about introducing cereal this weekend - a big step! We will of course take pictures of the big event. I have been trying to get more pictures to post, but she is very camera shy. I grab the camera to try and capture her talking and smiling, but the second she sees the camera she becomes silent and looks tentatively unsure of what it is, and more importantly what it is doing to her.

Thursday, June 08, 2006

Houston We Have Predetermination

Yahoo! It appears that things are all set for our trip to Maryland. "Carina", a supervisor at the insurance company, actually did get back to me - sorry for doubting you! We are approved for all of the first round appointments. We will have to pay it all out of pocket and then submit for reimbursement, but they should cover 90% - what a relief!

As soon as I hung up with the insurance company I was on the phone with the Kennedy Krieger Institute. We have an appointment to see Dr. Shapiro on Wednesday. This is especially perfect because my Mom arrives on Sunday. We are still looking into appointments with the other specialists. I am hoping to at least meet with someone in the Pain Clinic.

My brother, Tripp, was supposed to be arriving tomorrow afternoon for a visit and to meet Molly, but has had to cancel. His office building has had 3 confirmed cases of the Measles and we have been advised not to risk exposing Molly. So frustrating to change plans for something that is most likely not even an issue, but better to be safe than sorry.

Hooray for a day full of good news!

Wednesday, June 07, 2006

A Happy Day in Mollyland

Yesterday was a gorgeous day here in NC - 85 and sunny. Jim went to the Hurricanes hockey game, so I was flying it solo - that can make for a very long day. A friend, Casey, came over to spend the day and keep me company. I was thankful to have some company and we had a fun time being entertained by Ms. Personality herself!

We went swimming with similar results; she wasn't thrilled or unhappy - good enough for now. She has been enjoying her floor mat and is really beginning to interact with her toys. Being without Jim for the whole day makes me appreciate how helpful it is to have him around. I don't know how single mothers do it!

We are eager to hear from the insurance company today - no whammies, no whammies...

Tuesday, June 06, 2006

More Swim Pics

Here are a few more pictures from our pool adventure on Sunday.

Today was just another day - always a good thing to be able to report. She is working hard on talking, but so far it is a lot of HIGH pitched squeeling. She has now started making an "mmmm" sound - first "words" here we come!!

Monday, June 05, 2006

A Bittersweet Day

Today was a good one for Molly. She was fussy, but just because rather than due to pain. We are beginning to wean her off of the Codeine and I may have backed off too much, which may be the reason for the fussiness. It's always a guessing game with this little girl.

We should have an answer from the insurance company by Thursday - keep your fingers crossed! I am so anxious to have her seen by the experienced staff in MD.

I was reading the OI group messages and there was a very sad one. A family had a little baby diagnosed with Type II (generally lethal). They brought him home on the 1st and he died on the 4th. This is the closest I have ever been to anyone loosing their baby. It makes me so sad for this family and also makes me appreciate how fortunate we are. I wrote to the mother, but didn't know what to say. It is times like this that force us to look at the road ahead, but also help us to appreciate what we have.

Sunday, June 04, 2006

She's a FISH!!

We went swimming today at the neighbors. It was only about 75 out and the water was rather cool. She took a little while to get used to it, but soon seemed to be enjoying herself. If she enjoys it when the water is this cool, I can only imagine how much she will enjoy it once it warms up! She did a bit of kicking today and as time goes on I hope to get her to become more and more active in the water. This movement will have a very positive impact on her muscle development and might help to increase bone density as well. Way to go Molly!

We now have a key to the neighbors pool (and house) so we can go over several times a week to work on strengthening those kicks!

I spoke with a family friend today who is a big-wig in "insurance-land" and gave us some good tips. He is going to look into what else we should be doing to get this process expedited. He has recommended that we start sending in written requests in addition to calling, so our first letter will go out tomorrow.

Last night was a long one, up every hour and a half or so... Let's hope tonight is a bit more restful for all of us. Sleep well all you people out there in cyberland...

Saturday, June 03, 2006

OI In the News

I belong to an OI Yahoo! Group where you can post questions and get advice from other parents. Someone posted an article about a 5 year old in MN. I will include the link for those of you who are interested. There is a photo gallery (it isn't very obvious, but is under the heading Related Content) with pictures that show just how tiny she is.

OI Article (click here)

We have gotten some good advice on the insurance problem from some other OI families. I will begin working on it again on Monday.

She has been "talking" a lot more and seems to be working hard to make some consonant sounds. She is also big into making a high pitched squeal, which is funny but ear piercing. She has been obsessed with her tongue; she talks with it sticking out and is also constantly grabbing it with her hands. What a little character she is.

Friday, June 02, 2006

Wastin' Away again in Insurance-ville

I love her little face in these two pictures, you can see so much personality and spunk in her eyes.

Today was another day on the phone with the insurance powers that be. We have now determined that Kennedy Krieger (where we want to take her for treatment) is out of network. This means that we will be required to pay all expenses out of pocket and then be reimbursed by the insurance company. A rather scary step, but hopefully we will have something in writing from the insurance company before we go shelling out big bucks.

There is a nurse at Duke in the Pain Clinic, who we have never even met by the way, who is working hard for us to find some more effective pain medicine. She has been so helpful and given me lots of suggestions of what to look into. We are bumbling along through this process and she has given me a better idea of what should be happening that isn't. It is amazing to see what some people will do to help you with a sick baby. There is nothing like help when you need it and it is that much more appreciated when it is something as important as this. We are so new at all of this and there is a real sense of powerlessness that comes with this ignorance.

She has now been on ibuprofen for 2 weeks - due to fractures a week apart - and she was only supposed to be on it for 3-5 days at a time. The codeine works to some extent, but she does seem to sleep much better after the Ibuprofen. The fractures happen so close together that it looks like she is going to be on pain medication most of the time. The codeine is one that we have to wean her off of a little bit at a time; we have gotten down to 2 doses a day at times, but just as we get ready to take her off, she fractures again. I am looking forward to finding a better solution for her.

We read Amelia Bedelia today for the first time. She definitely likes Dr. Seuss a lot more - if it doesn't rhyme, she's not interested.

Thursday, June 01, 2006

Sleeping Beauty

We had a long night - up at 2:30, 5:00 and then up for good at 6 - but a great day. She was happy almost all day and took two naps, one for over an hour - unheard of!! Casey came over to visit and the two of us decided to take the risk and head out to run some errands. She was on her best behavior for the whole trip. We have some new bath toys to try out in the pool - I can't wait!

I fed her at Babies R Us and encountered the "How old is she?" question that seems to be the universal question we all ask. People look more and more surprised as time goes on when I tell them. She was in the 3rd percentile the past few doctors visits and I'm sure that will stay the same for a while and then eventually get worse. It is hard to have to explain to complete strangers why she is so tiny. I have heard from other OI parents of odd and insensitive responses, but feel fortunate not to have had that experience yet.

I had to use the boppy pillow for nursing, the last time I used it is when she had an audible fracture a few weeks ago - we think of the spine. I was anxious that something would happen because her spine tends to sag because the pillow isn't firm enough. I have ordered a stiffer one for the car to fix this. She was a bit fussy when we got home and now I spend time guessing whether she has a new fracture or is just being a fussy baby - PLEASE start talking soon! She is now sleeping - VICTORY - so I'm guessing all is fine.

We are working with Jim's company to put some pressure on the insurance company, hopefully we will hear soon. I spent another half hour on the phone with them and was told that the department that is working on the request does not have the "capability" to make or receive calls - are they working in a cave?? I hope to have a break soon from this very frustrating process. "Carina" will be watching over my case, but I can't have her last name or phone number, so I'm not sure how helpful that will be.