A Good Check Up

Molly has had a good week and has been healing quickly. She has been standing here and there for a moment or two at a time, but no more. We haven't been encouraging any standing and put her walker away for the week. We went to see the Orthopedist today and took some X-Rays to check on things. There is new bone forming and he has given us the go ahead to bring the walker out and encourage her to do whatever she is comfortable with. She already took a spin around the playroom and walked for almost a dozen steps. What a relief! I was worried it might be a month or more before we would be able to work on this again.

I am including a video of Molly trying out a power chair at the PT's office. It was SO fun to see her mobile on her own. It was also terrifying, but I think it is going to be great for her.
CLICK HERE for the video.

I found Molly a wheelchair accessible playhouse this weekend at a yard sale and we have put it in the playroom and she LOVES it! One whole side of the house opens up so that you can wheel yourself in - it is perfect for her! Here is a video of her seeing the house for the first time CLICK HERE.



Molly's new pull out couch:


Molly exploring her new play house:

Healing Quickly

I am happy to report that Molly is doing extremely well and is almost back to her old self. We haven't even needed to give her pain medication throughout the day today. She amazes me with her ability to bounce back so quickly. She is crawling everywhere and is even standing for seconds at a time. We went and saw her orthopedist yesterday and told us not to encourage any standing quite yet. We're going back in a week to take new X-Rays to make sure things are healing well and then we should be able to begin working on standing and walking again.

Thank goodness things improved after our long night on Saturday.

We think we have officially decided that a power wheelchair is the right choice for Molly. We met with her PT and a wheelchair vendor yesterday and she tried out a couple of the chairs. I wasn't sure what to expect Molly to be capable of doing, but she blew me away. It took her a little while and she couldn't maneuver or anything elaborate, but she definitely got the idea that if she pushed the joystick forward the chair went forward. I wheeled around in a manual chair and made a game of it for her to chase after me, which worked very well. It is so exciting to think that she could be independently mobile out in public! Yikes!! Very exciting stuff.

We took some brief videos and will upload them when we get a chance. They will be dropping off a chair for us to demo for two weeks in October. We will have to work on building her skills so that we can demonstrate to the insurance company that a power chair is appropriate and she is capable of operating it herself.

A fracture and a long night

We took Molly to the ortho yesterday morning and they took x-rays of her right lower leg. It looks like the fracture is at the very bottom of her tibia (close to the ankle). He made a splint and told us to come back on Tuesday to meet with her ortho. She was in good spirits on Saturday and we even got out of the house for a little while for lunch.

We tried to put her down for bed and things fell apart from there. We would rock her until she fell asleep, but as soon as we put her to bed she would wake up and cry until we picked her up. This went on for hours. Finally, we decided to let her stay up and read and play for a while. She was happy until we tried putting her to sleep again. I checked her for rashes, etc. and made sure we had given her as much pain medication as we could and I couldn't think of what else could be causing all of this trouble. I brought her downstairs at 6 and tried driving her around to fall asleep, but this also did not work.

Finally, I realized I needed to check her leg and took the splint off. She had big sores on the front of her ankle and her heal was all red and swollen. I had no idea that pressure sores could form so quickly. I felt terribly that I didn't figure this out earlier. We have had the splint off all day and she has been happy and crawling all around. She slept for an hour and a half in her crib for a nap and then came down and napped on me for another hour and half. The sores look better, but still look irritated. Hopefully a tonight will be better for Molly and will allow her sores time to heal.

She tried putting pressure on the sore leg, so we will have to see what the ortho says as far as how to protect the leg while it heals. My instinct says that she is good at self limiting and she probably doesn't need anything on it, but I would hate to be wrong and let her do things that injure it further and cause complications down the road.

Here's to a good night's sleep at the Sullivan's!

Tibia Fracture?

Yesterday morning we went to see Molly's PT and she was AMAZED by Molly's progress. Molly walked all over the PT room with her walker and it was so fun to show off her new wonderful skill.

Around 4:00 we were in the playroom and Molly was pushing on the side of one of her plastic bins of toys and it dumped over and she fell over her legs. I was hoping that she was just scared, but it was clear that she was in a lot of pain. The good news was this was the first time she was able to show me where it hurt. The bad news is we think she has fractured her right tibia (shin bone). This bone is the most bowed and will need to have the rod replaced sooner than later. The orthopedist in Omaha (Dr. Esposito) thought the rods would last about a year - hopefully he is right.

We have her leg in one of her splints from her surgery and we are going to see her orthopedist today to have him take a look and decide if we need an x-ray. Once we gave her medication last night she ate a good dinner and even did some laughing, so hopefully this is a minor fracture and she will recover quickly.

We are just devastated that she will now not be able to walk with this new fracture. It may only be days before she begins to stand on it again, but we will have to wait and see. Thankfully, she slept through the night (we gave her some Motrin in the middle of the night to keep her comfortable).

She is starting to wake up now, we will see how things go...

Walking!!!

Molly has already made tremendous progress with her walking. She is now taking many steps at a time (with a lot of encouragement from us). She did it with me yesterday and did it several times today.

Here is a video of her walking CLICK HERE to her friend Amanda, an 11 year old who also has OI and happens to live only a couple of miles away. She had fun walking up to Amanda and tickling her hand and allowed me to move her back to repeat few times before she had had enough.

There is also a video of her at her play kitchen cooking CLICK HERE.

Here are a couple of pictures of Molly and Amanda. Amanda just had surgery yesterday morning to replace a rod in her Tibia (lower leg) and was home within a few hours of the surgery!! She is doing amazingly well. The two girls already have a special bond and we are lucky to have them so close by.

Steady Progress

Molly is doing well and keeping us busy. I left Molly and Jim on their own for the weekend and headed up to Pennsylvania for a wedding reception. It was nice to get away and I think they had a great time together.

She has started taking a few steps along the couch, which is great progress. She also took a few steps with a walker we have borrowed and we are excited to continue to work on that. She is such a good crawler that it is hard to entice her to want to use her "Star Car" (pre-wheelchair) or the walker, but she will tolerate it for brief stints.

She is getting more and more interested in pretend play and now offers us imaginary food to try, which is adorable. She has started trying to make car noises and likes to play with little figurines in doll houses etc. This is such a fun age.

A Real Handful!

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.

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!

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.

Exhausted, but doing well

Molly has been keeping us very busy these last two weeks. She is crawling all over the place and is into everything! We are at a very challenging phase. She is very active, and way to young to be told to be careful. We have had a lot of close calls. She is pulling up on her knees on everything.

She has had 2 new, minor, fractures in the past couple of weeks. She was playing at her plastic kitchen and fell into it and fractured something on her sternum and possibly her left arm. A week later she pulled to her knees in the kiddie pool and fractured something in her left Tibia. She has not wanted to stand for more than a few seconds at a time since hurting her leg, but it has not slowed her down with her crawling at all.

There has been so much going on . We have been continuing with our water therapy twice a week on our own and then once a week with a therapist. We met with a wheelchair rep recently and talked about what will be best for Molly and got some new ideas to research.

In the past few days Molly has started singing along to "Row, Row, Row Your Boat" and the "ABC's" and it is adorable! Molly now has her first pair of shoes, which is also a big step. We are so hopeful that her leg will heal soon and she will be able to stand for longer periods again.

We think our insurance woes have been fixed, but I won't feel confident until she has her next treatment and the bill goes through. All we had to do was have the home health agency resubmit it with a different code - we'll see if that was really all we needed!

She continues to be absolutely adorable and a ton of fun. She is also changing and learning more and more by the hour.

We went to Gatlinburg, TN a couple of weeks ago and met 3 other OI families there and had a really wonderful experience. There was a little girl who was 5 and only learned to walk last year. She was doing remarkably well and it was great to see all of the things she was able to do. She went go-carting and down a raft on a water slide and was able to play with the other kids quite well. It was so nice to be around families that know what we are going through. We learned a lot from them and now will have other families to get together with for a lifetime. It will be wonderful for Molly to have other kids to get together with to feel "normal" for a weekend.

My brother came to visit a couple of weeks ago and had a great visit. There are some pictures of him and Molly laughing up a storm. He really loves being an uncle and it was fun to see the two of them together.

I am having a hard time finding time to accomplish much of anything at the moment (including blogging), but I am hoping we will come up with some ways to make life a bit more manageable. My friend came over for the day today and it made a BIG difference having another set of hands available to get things like mealtime and bath time done. I'm not sure what our long-term solution will be. We have received a denial letter for the state program we applied and now have to appeal the decision in person at a hearing. The case-worker that came for the evaluation strongly suggested that we move forward with the appeal, which gives me at least a little bit of hope.

There are lots of new pictures and a few videos for you...

Here is a link to photos for ages 18-21 months: CLICK HERE

Videos:
Molly Dancing (a few weeks old)
Molly saying most of her words
Foot to mouth
Molly saying More and Noodle

Standing for the First Time!!

We weren't sure she would ever be able to stand, so we are SO excited that she has met this milestone! She has come so far since her surgery and we are so happy. She stood for the first time on Monday and has slowly been standing more and more since. I can only move my hands away for a few seconds, but she is getting better and better at it. I think it is only a matter of time before she begins pulling up to a stand on her own - YIKES!! Things are about to be very different in our world!

We are just so happy.
This is another little boy's walker that we tried Molly out on...


The computer is a BIG motivator right now (Sesame Street games :) so we use that to try and get her to stand for longer, which works pretty well...

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:

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.

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. :)

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:

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.

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.

Some Ups and Some Downs

Molly is doing very well and seems to be getting better with each day. Today for the first time she transitioned from sitting to crawling on her belly without any assistance - a big milestone for us! She also started trying to put some weight onto her left leg (her good leg) while on all fours. She has been crawling with her left leg and dragging her right to get herself a few feet at a time, but has been getting rather frustrated by her difficulty moving. She seems to be doing better and better and I'm sure will be back to crawling in no time.

They came to do her infusion here at the house on Sunday, but the orders weren't right, so we had to postpone. They came and flushed her port on Tuesday for the first time and that also went well. She has to have her port (an IV access that is a "button" under the skin) flushed every four weeks to prevent a clot from blocking it off. We somehow lost track of time and it had been 6 weeks by the time the nurse came. I was anxious to see how it went and was relieved when it went so well. The nurse said it was well placed and easy to access :). In the next several months she will train me on how to flush it and then I will be able to do this part on my own.

I emailed Dr. Plotkin, the endocrinologist in Omaha, to clarify Molly's Pamidronate orders since they weren't correct. He wrote back with the information we needed and also shared that he is moving to the east coast and will no longer be seeing OI patients. We are CRUSHED to say the least. It has been an emotional few days trying to think about who we will turn to now when questions and complications arise. He is an AMAZING and very bright doctor. He is wonderful to work with and clearly has his patients best interest in mind. We had been searching for a doctor that we respected and could count on for good advice regarding Molly's overall care and finally found that in Dr. Plotkin. The protocol he has designed seems to be a perfect fit for Molly and now we are not sure how to proceed. He is the only one in the country that uses this protocol and we are not sure if someone else is going to adopt it or not.

There are only 3 centers of excellence for OI care in all of North America: Omaha, Maryland (Kennedy Krieger), and Montreal Shriner's. We have already gone to KKI (Kennedy Krieger Institute in Maryland) and did not feel it was a good match for us. We hhttp://www.blogger.com/img/gl.link.gifave started the application process for Montreal, but put it on hold once we found we were happy with the care in Omaha. I think we will now have to reapply to Montreal, but they require that you see a local Shriner's Hospital first and do not accept all OI applicants. As of March we finally felt like we had someone to turn to when issues came up. I am overwhelmed to be losing this short-lived peace of mind.

The clinic in Omaha is going to continue to run, so we will at least still have Dr. Esposito (the surgeon) for that aspect of Molly's care. Thank goodness for that! I can't imagine having a better experience with any doctor than we had with Dr. Esposito before, during and after Molly's surgery.

The Home Infusion company says that they have new and corrected orders for Molly's Pamidronate, so we have tentatively scheduled Molly's infusion for next Friday. I am hopeful that things will go smoothly and that this will be a much better option for all of us than going to the hospital over night every 8 weeks.

New Videos:
Molly uses Maracas for the first time CLICK HERE
Molly draws a picture CLICK HERE

A Good Report From Dr. Esposito

Dr. Esposito called last night to discuss Molly's X-Rays. He thought that everything looked like it was healing nicely and seemed happy with her progress.

She is starting to crawl with her left leg, but not her right, so she is doing a combination of dragging herself and crawling. She has only moved a few feet up to this point, but I think she is going to begin to be more and more mobile in the coming days.

We are supposed to let her do things at her own pace as far as position and mobility at this point. He felt that she would be feeling a lot better closer to the 8 week point.

Her right leg isn't able to completely straighten at this point, so we are going to talk to the PT and OT about making a straight splint to put her leg in to help stretch her muscles and ligaments.

There are 3 new videos that Jim took while I was away.

Here is a video of Molly wanting to be tickled CLICK HERE

Video 2 is of Molly talking CLICK HERE

The last video is of Molly getting the hang of her Star Car CLICK HERE

A Wonderful Husband and Father

Molly is doing very well.

I drove to CT on Saturday and left Molly for the first time. I headed out before she woke up and I thought I would fall apart when I left, but I guess I was ready because I felt fine heading out on the road.

Molly and Jim had a great 4 days of bonding and she didn't seem to notice or care that I wasn't there, which was good. It is nice to know that I can go somewhere again and she will adjust to the situation without any problems. Jim did a wonderful job and took care of all of the aspects of Molly's care like a pro. I am so lucky to have such a wonderful husband that can take care of both Molly and I so well. I think they both had some great bonding time and I know I benefited greatly from my time away.

I had a great time in CT with my whole family to celebrate my Grandparent's 60th wedding anniversary. It was good to see everyone and it was nice not having to worry about anyone but myself for a little while. I also visited my friend Bobbi and got to meet their new little boy, Logan, who is 7 weeks old as well as visit with their 3 year old Sam.

I drove back yesterday and was worried about how Molly would respond when she saw me. I have heard that sometimes kids will give you the cold shoulder after you have been gone for a while, but fortunately Molly was happy to see me and let me pick her right up.

Molly is still not crawling. We are waiting for Dr. Esposito, her surgeon, to receive her recent X-Rays so that we can talk about how she is doing. We're not sure if she isn't crawling because something is bothering her, or whether it is just going to take her some time to become mobile again. Her right leg still seems to be her weaker leg at this point. Last night she tried to crawl forward a few inches, but would only get up on to her left leg. We will wait to talk to Dr. Esposito to figure out what is going on there. Jim and I are still trying to prepare ourselves that there is a chance that Molly simply won't be able to stand. Her right leg is a bit shorter and still has some bowing, so we will just have to see how things go as she continues to heal and gets stronger.

There is a new video of Molly on the microphone toy




Amanda (our 10 year old neighbor with Type III OI) came over while I was away to play with Molly and they seemed to have a blast together. Amanda is wearing a "Wee Walker" because of 2 Tibia fractures. She and Molly seem to have a special bond and we are fortunate to have them so close by.