The Magic Word

Molly is keeping us VERY busy. She is talking more and demanding things all day. Her new trick is to announce "I need to poop" anytime we mention something she doesn't want to do. We have also been spending quite a bit of time in the trunk of the minivan while Molly sits on the potty. Several times in the past few days I have had to pull over 1/2 or less from the house because she insisted she needed to go right then, and no, she couldn't wait. The good news is she has been dry (and in underwear) for a few days in a row.

We had water therapy today and she did amazingly well. She walked on a little bench just holding on to a pool noodle and then also did a bit of swimming holding on to the noddle. We had a very scary incident after swimming. She was on her potty and fell off the back, hitting her head on the door and landing on the tile floor. Thankfully, it wasn't a far distance and after a few minutes calmed down and doesn't seem any worse for the wear. I have now purchased another travel potty to see if it is any safer. I'm sure she will find some way for this new one to be dangerous as well.

We are trying to get ready for our trip to Maine and are completely overwhelmed. Jim took time off today to help get ready and then will be coming tomorrow to pick up the powerchair and then head to the van lift company as well. So, he is feeling overwhelmed at work and I am feeling overwhelmed at home - not a great combination. Boy do we need a vacation!!

The new manual chair seems to be working very well and she is able to wheel herself around a few feet at a time, which is more than she was doing in the kid-kart. I am SO excited to pick up her new power chair tomorrow!!

Happy Days

We have had a wonderful week. It feels like things are really starting to fall into place.

Molly has started being able to walk with her walker without anyone holding on to the walker, which is a huge milestone (especially for our backs :). Here is a video of her walking at the orthopedist's office CLICK HERE.

We bought a titanium wheelchair on Ebay and it arrived yesterday. It was a big risk buying something like this with out seeing it and putting Molly in it, but it looks like we are going to be able to make it work very well for her. We went to get a seat belt put on the new chair yesterday and they had already received her purple powerchair, so she was able to take it for a test drive in their warehouse!! Wednesday we go to pick it up and make any necessary adjustments - hooray!!

Honda finally stood behind their product and they gave us a brand new van in exchange for ours. What a huge relief!

The potty training is going really well. Molly is insistent on wearing underwear and yesterday we went all day without an accident!!

Yahooooooooooo!!

I called the insurance company today to find out the status of our wheelchair request and was completely caught off guard when they told me it was approved. I called the mobility company to have them check to make sure this was accurate (before I started celebrating) and was overjoyed when they called back to confirm it had been approved. They ordered the chair this afternoon and it will be here for us to pick up on December 19th - WOW!! This is SO much sooner than we had anticipated. We are THRILLED!! This is by far the BEST Christmas present EVER!!

In other news, Molly is doing really well. Her vocabulary is just exploding and she is now stringing 3-4 words together. Today's word has been "Cute". Apparently everything is cute (including herself). She is also saying things like "I know", "I did", "Here you go".

She is walking a lot now with her walker and can go up and down a few aisles in the grocery store. She has also started trying standing without holding on to anything for a few seconds.

Jim has been busy teaching Molly some car related trivia and there is a video of her sharing her knowledge CLICK HERE.

Infusion #13

We had Molly's 13th infusion yesterday at home and it went extremely well. She only fussed when Beth (the nurse) got ready to put the needle in and at the end when we took the bandage off. It has been such a wonderful improvement over going to the hospital overnight.

We are continuing to have success with potty training, but are now using diapers to prevent any accidents. This seems to be working. She still isn't telling us when she has to go, but if we time it right she will go as soon as we put her on the potty and seems to be holding it a bit more. We're keeping our fingers crossed :)

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.

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.

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!!

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:

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.

Happy Halloween!!

Molly and Amanda at their church "Trunk or Treat" (people dress up their trunks in the parking lot and give out candy)

Molly dressed up as a "Meow"

Molly having some fun in her purple loaner chair:


We have been having a great week. Our pumpkin carving party was a great success. We all had a great time and Molly had a BALL! My mom (Mimi) flew out yesterday and we had a great visit.

We got a different power chair to demo on Monday and she really seems to like it. I had them make it a bit faster, which might be the difference. This chair can lower to the floor so that she could get in and out by herself as she gets older. She drove it a couple hundred feet yesterday, which was a huge accomplishment! I was getting her out of the car today and she said "chair, please"!! Wow! What an exciting moment! I think she is really ready to have this independent mobility. It is hard because it will be 6-8 months from now before she will have a chair of her own. I hope that it is on the shorter end.

Today was Halloween and we dressed Molly up as a cat. We went to a neighbors house for a pre-trick-or-treating get together and we drove her chair thinking we would be heading right back to the house. We went to look at the decorations at one of the houses and then all of the kids were out to trick-or-treat. She latched on to this one little boy (Zack) and we followed them around for about 20 houses!! I never anticipated her having the stamina to be out for that long. She even said "Trick-Treat" when prompted :). We didn't actually go up to the door at many houses, but she had a ball following the big kids around. We came home and Jim greeted us with the bowl of candy and Molly said "Trick-Treat" (unprompted) - adorable!

What a fun little girl she is! It was so fun being out with her in her chair, especially with other little kids. She didn't drive much once it was dark, but now and again she would drive herself 2-12 feet and that is a whole new world for all of us. Keep your fingers crossed that we don't have to wait too long for her to get her own!

Pictures and a long overdue update

Sorry for the delay, but we have been busy and it has been hard to make the time to write.

On Saturday the 13th, we went to an LPA (Little People) event. It was nice to meet some other families and their kids. I am hoping that this will be a good community for Molly to be a part of as she gets older. We went with them to a pumpkin patch that also had some farm animals and Molly had a ball! She got to see some goats, chickens, pigs and sheep and was quite happy until they got too close to her by the fence - at which time she started firmly saying "No, No".

On Monday (the 14th) the wheelchair vendor dropped off a power wheelchair for Molly to demo for the next two weeks. She got the concept of stop and go almost immediately. We got her to drive all around the yard. It was so fun to have her independently mobile. It was the first time she had gone to the backyard on her own.

On Wednesday (the 17th) we went to the State Fair with our neighbor Lori, and had a blast. Unfortunately, I forget the camera, so there are no pictures :(. She got to hold a baby chick, which I think was a highlight, as were the cows and miniature horse. There were some performers singing and dancing with fiddles and banjos and Molly had us dancing the whole time and grinning from ear to ear.

I headed to the coast for the weekend with a bunch of ladies and Jim and Molly spent some quality time together. I had a wonderful time getting away. It was warm enough that we went swimming and got to take some nice walks along the beach. These ladies meet twice a year to make scrap books and I put together my first scrap book (an entire book of Molly photos). Jim and Molly had fun together, but while they were out Molly's chair rolled away (the brakes on her chair failed) and she tipped forward and smacked her face against the front of the van. She has a slight black eye and cheek, but thankfully came out with only minor bruising. Every kid gets their bumps and bruises, but it was more than a minor scare given Molly's fragile nature.

My Mom arrived today and will be here until Tuesday. It is so nice to have an extra set of hands and eyes to deal with all of the evaluation and work that goes along with caring for Molly.

I have been having trouble getting Molly to drive her chair anywhere and it seems to be getting worse each day. I'm not quite sure what her hang-up is, I am guessing she is simply enjoying the fact that she is in control. She is one stubborn little girl, but as people keep reminding me, it is her stubbornness that will allow her to be successful.

We are having our annual pumpkin carving party on Saturday and I am really looking forward to it. I will try and get some pictures up soon after the party :).

Here is a picture of Molly in her SUPER COOL power-chair (on loan)...
Molly doing some great standing at the dishwasher...

Molly enjoying her swing and her new glasses. She LOVES her new glasses and wears them even in the house :)...



Here is Molly with her good friend "Livie" (Olivia). You can kind of see Molly's "shiner" (her left eye)

Here are Molly and Livie playing at Olivia's house. They have been getting silly lately and squealing in a very shrill girly voice and laughing hysterically. It is so nice for Molly to have a friend to play with. Olivia is a year older than Molly, which has been great. Olivia told us this last visit that Molly is her best friend :)

Our Little Artist

Here are a few pictures of Molly doing some art projects during her infusion on Saturday...



Molly's infusion went very well on Saturday. It has been so nice doing her infusions at home. I love having the same nurse and having it over so quickly.

We had a great day today. We went to our local PT and went to a huge gymnastics space and she had a ball! There were foam mats and ramps and she went all over the place. Next we went to play with her new friend "Livie" (Olivia). Olivia came out to the car to greet us and Molly started babbling and then the two girls were giggling and squealing with delight - adorable!

I noticed that Molly's teeth are really starting to wear down and it reminded me that we will probably have to prepare to have all of her baby teeth capped in order to protect her baby teeth. This will be costly and will be another surgery under general anesthesia.

We also found out that the state funding we were hoping to utilize to help pay for Molly's power chair will no longer exist for us as of January 1st. So now we need to scramble and try and submit for her wheelchair now in hopes of having a chance to access the funds while they are still available. I was disappointed to learn about this change in funding because it was our back up plan for when our insurance company gave us a hard time about a piece of equipment for Molly. We were hoping that if our insurance company refused a manual (after getting her a power chair) that we would be able to rely on this state program to help get her a chair (once she outgrows the manual she has now). It is so frustrating that all of this equipment is so expensive and generally requires a fair amount of fighting with the insurance company in order to acquire.

I'm sure it will all fall into place and we will make due with whatever happens, but some days are more difficult when several things come into light on the same day.

Mobile Progress

Molly is doing well and making progress everyday. She is really entertaining us these days with her playful personality. She has enjoyed reading a particular book this week that asks you to do things like "turn your head", "shrug your shoulders", "pound your chest", etc. She wants to read it many times a day - too funny. We now have a video monitor and she was up there making a funny noise during her nap time and when I went over to see she was lifting up her shirt and "pounding on her chest" - adorable!

She is also very particular about the music I have on in the car. When she doesn't like the song she says No louder and louder until I change the song and when she likes the song she shouts "more" when the song is over. It is amazing how sure she is about what she does and does not like at such a young age.

She also has definitely decided that (for now) purple is her favorite color followed closely by blue and pink. I had no idea that a 20 month old could have a favorite color.

She has been making some good progress with her walking and tonight for the first time since the fracture she walked almost 30 feet (it took us about 15 minutes to get that far, but she was either walking or standing that whole time).

We also found a wonderful family in Michigan that donated a tiny little manual wheelchair to Molly. The mother has Type III OI (and stands 2' 10") and has twins (a boy and a girl) that both have OI. The kids are 9 and the daughter outgrew this chair quite a while ago. We received it a couple of days ago and we are now working on getting Molly to use it with some success. Here is a video of her using it on the first day CLICK HERE.

She is talking more and repeating words, which is promising. My new favorites that she says are "armadillo" and "everywhere". Here is a video of her talking CLICK HERE.

She is getting her infusion tomorrow and hopefully everything will go smoothly.

Here's a picture of Max, Amanda, and Molly outside. Molly has now sat on Amanda's lap a few times...

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: