Femur Fracture

Molly using her walker at a Hydroponic Farm in Cary:

Molly on her first ride-on toy, scaring Jim and I but having a ball :)

We have been having a wonderful week.  Molly stood on Monday for the first time since her surgery and immediately asked for her walker.  She walked all the way from the family room through the kitchen and into the playroom.  We had X-Rays taken on Tuesday and things looked good, so we were given the go-ahead to allow her to walk as long as it felt OK for her.  She has been walking really well and today at the pet store walked all around without any sign of the limp she had before the surgery.  We came home and she was playing at her plastic chairs and somehow she fell off the chair.  I was a foot away and when I bent down to pick her up she had one foot on the chair and the rest of her body on the floor.  The cry told us that she fractured, but we are still not 100% sure of the location of the fracture.  It seems it is in the left Femur (upper leg), but it is unclear whether the fracture is in the middle or higher up on the leg.  Our wonderful neighbor, Lori, came over to distract Molly and help us figure out where her leg hurt.  We made a splint out of fiberglass material we had in the house and it was a very traumatic experience for all.  She screamed in pain the whole time we were making it, but I knew she would hurt every time we had to move her if we didn't splint it.

The fracture happened around 1:00 and within a few hours she seemed a lot better.  She was afraid for me to pick her up for fear of it hurting, but with a lot of reassurance she let me pick her up and we went out to her power chair and went for a nice walk.  She didn't whimper when I picked her up, so I am hopeful that she is feeling better and that the splint is effectively bracing the fracture.

We emailed Dr. Esposito and have already heard back from him.  He thought that as long as she was comfortable it would be reasonable to wait and see and not go to the ER.  There is an after-hours urgent care place, but of course it is closed today and tomorrow.  Bummer.  Dr. Esposito said that most likely the rod would splint the fracture and that she would be feeling well enough to crawl in the next week or so, but we will have to wait and see.  There is a small chance that the rod could have bent because of the fracture, but as long as it is only minor the leg should heal and we won't have to rush back for another surgery - keep your fingers crossed. 

Jim and I are both feeling rather sad after having such a wonderful morning with her being so mobile and independent.  Molly has had to go a lot, but her spirits are very good and we are hoping she is able to get a good night's sleep despite the fracture.

Here are some videos of her doing well:

Molly chatting at the table

Cheering on Kimi (a Formula One racer)

"Tell me No" (like her favorite book "No David")

Almost "Hit The Roof"

Some New Photos...

Molly and I baked together for the first time.  We made banana bread and had a ball!

Molly was pretending she caught a bird and was offering it to Jim :)

Tripp got this shirt for Molly in Nicaragua (on the back it says para mi)

Molly's fried Livi came over to play and I braided her hair just like Molly's :)

Here is a video of Amanda (the 11 year old with OI) on the local news.  Don't worry, she is just acting and doesn't actually have an arm fracture :).

Lots to do, but doing well

I have had a hard time finding time to get on the computer, but things are going well.  There has been a lot going on and it feels a bit overwhelming at times, but thankfully Molly is doing well and seems to be feeling well.

Dr. Esposito wants us to wait another week or two before we encourage her to start standing.  She seems ready and is doing a lot of walking in the hot tub.  

We are waiting to hear from Montreal Shriner's regarding Molly's application.  You have to be apply and have your case presented to the medical board in order to be accepted for treatment there.  We had expected to hear by now, but are hopeful that we will be able to schedule an appointment soon.

We are getting ready to have a meeting with the school system about enrolling her in a preschool with a school provided aide.  She is eager to be in a school environment, but needs a 1:1 aide, for obvious reasons.  I am nervous that this is going to be a long battle, but I hope to be surprised.  I am trying to research what is required in order for her to be eligible.  From what I have read thus far she should definitely be eligible and most of the other families I know of with kids with OI have had their children in public preschool with an aide - so keep your fingers crossed!!

We are also in the last stages of researching a lift for the van so that we can take her power chair with us outside of the neighborhood.   We have searched for resources to help pay for the lift, but thus far have not found any.  There is a $1,000 rebate for vehicles less than 6 months old, so we will at least have that money coming back to us, thanks to the warranty replacement of our Honda van.  

We are also beginning the process of applying to our medical insurance to get Molly's teeth capped.  Her teeth are wearing down fairly quickly and the dentist thinks it will be appropriate to cap them (an 8 hour surgery) in another 6 months or so.  Now, we have to battle with insurance to get it covered.

Molly is entertaining us by the minute with her sense of humor and sharp wit!  When I spell something for Jim,  Molly will ask "what did Mommy spell" which makes us all smile.  She is playing hide and seek a lot and is now hiding a toy in her hands, or her hands in a book and asks us to find it with a huge grin on her face.  She will say that "Daddy is such a good boy, I love him" and the same to me :).    She is also really enjoying pretending to be a princess and tells me I am the King.  We go "shopping" while in the hot tub and pick out imaginary crowns and magic wands (hers is of course Purple).  When I tell her she can't do something she will ask "why" and then say "talk to me" (which means explain it to me).

Livi came over for lunch today and the two of them were adorable playing together.  They really just love being together and it is adorable to watch.  Molly has a lot of work left to do as far as sharing goes, but she has gotten a lot better.

She has started asking us to tell her No and she laughs and goes on to the next thing and tells us to "tell me no" again and again.  At bedtime she told us to "tell me no napping" and we all laughed a told her, no we won't tell you no napping, it's bedtime.  Jim started carrying her up the stairs and our clever daughter said "tell me no going upstairs" she is very crafty!

Here are some videos:

Molly singing

Molly up past her bedtime

Diaper "bracelets"

Counting to 12

Splint Free :)

Hooray!  We went to see Dr. Caudle yesterday and got the go-ahead to take off the splint on her arm.  He thought things were looking good.  He didn't take any X-Rays, but clinically thought things were looking well.

Molly had a speech evaluation yesterday and things went very well.  There are some sounds that she is not able to make: Milk = Milt, Bucket = Buttet, Spoon = Suoon and some "F" sounds are off.  She also used to say "Shish" instead of Fish, so there is at least one example of improvement.  A normal score for pronunciation would be anything under a 10 and she scored an 11.  The therapist thought this was fine and that unless it was impeding our ability to understand her that she would correct it on her own.  So, one less thing to worry about :)

They also did a series of expressive and receptive language tests with her and she did exceptionally well.  I am not writing this to brag, but rather to express my fear of having an unusually advanced little girl.  The Speech Therapist was supposed to continue the test until Molly bottomed out and could no longer answer the questions.  Well, we were at the 5-year-old level and she still hadn't bottomed out.  The therapist recommended that we stop, since it had already been an hour and there wasn't any need to continue.  Yikes.  Molly was asked verbal questions and also asked to point to different parts of a picture book the therapist had with her.  She was asked to repeat 5+ word sentences, which Molly was able to do rather easily.  She was asked to point out "his dog" given a picture of a boy and a girl each holding a dog, Molly was able to point out who had more ice cream or apples etc. and who was taller.  Molly was able to point out which picture would have shown what it was like outside when "Cindy" got all wet, or what it would look like at nighttime.  Molly seemed to ignore the therapist when the question was too easy and it would take many requests to get her to answer, but when it was a challenging question you could see her studying the picture and really thinking about her answer.  

This is all good news, but has me quite nervous about her placement for preschool when she turns 3.  I am hopeful that we will be able to find a public preschool to provide a stimulating environment for Molly with mostly typical students, as opposed to a predominantly special needs environment.

Her ability to interact with us is progressing by the moment.  She is now able to recite whole pages of some of her favorite books and has also started singing most of the lyrics to some children's songs as well.

Bedtime and naptime have improved a little bit in the past few days and we are hoping this will continue.

Stubborn and doing well

Molly went in the hot tub for the first time and had a ball.  She did a lot of kicking, but told me she didn't want to stand because her legs still hurt.  

She is giving us a very hard time at bedtime and naptime and trying all the delay tactics she can think of .   I am exhausted with all of the battles and hoping that this is a short lived phase.  It is hard because she is saying that she hurts, but only around bedtime and naptime and I don't know if it is another tactic or whether she notices pain when she is still and alone.  

I have been assured by the pediatrician that she should take a nap until she is 4 or 5 and some of my friends have gone through these phases as well and still take a nap.  

We went to a metabolic dentist (Dr. Wright) yesterday to enroll her in a DI (Dentinogenesis Imperfecta - brittle teeth) study.  He thought her front teeth were starting to wear and we will probably need to cap them in the next 6-9 months.  He did give us some hope that occasionally insurance has paid for this procedure.  If they won't it will be $5,000+ out of pocket, so we are going to begin applying for it now.

Good News From Dr. Esposito :)

Dr. Esposito just called and gave us a good report on Molly's X-Rays. He thought her Humerus (upper arm) was almost completely healed and we should be able to take the splint off in another 2 weeks or so. It has already been 4.5 weeks, so I guess we can make it another couple of weeks. He though the Tibias looked straight and saw some healing on the back side of the osteotomy (break) sites. He said that often if there is any bow that the front side of the bone tends to have trouble healing. If she has not had significant healing in another 4 weeks (2 months post-op) that we will look into getting a bone stimulator to improve healing.

He thought that things looked good enough to try some water therapy, assuming that Molly could tolerate it without pain. We will probably jump into the hot-tub tomorrow and see what happens. We can try some weight-bearing in the water, but not on the land for another 2 weeks or so.

Molly has been having tantrums today and it is hard to know what they are about. Everything has become a negotiation and she seems to want everything immediately and always her way. I suppose a lot of this is her age and a little of this is her personality. Her feistyness makes life very challenging, but also very entertaining. She has been working very hard on coming up with as many delay tactics for bedtime as possible, which has been exhausting. We have slowly been eliminating them from her repertoire and tonight was the first time in a while that she went to bed without a lot of battles.

She got a pair of Crocs (shoes) yesterday and they have been a new favorite thing. She has been without shoes for over a month due to the fracture and then the surgery and I think she is really enjoying being like the other kids. Our neighbors all just got Crocs, so I think it is especially nice that hers are exactly like her friends.

She is using the potty a couple of times a day generally when she needs to poop, but still does not seem particularly interested in making it a daily routine.

Ups and Downs

Molly has been in good spirits for the most part, but we have had some bad days. I think some of the days were because we dialed down her pain medication and sometimes she needed more than I was giving her. She has had some pain complaints in her feet and fingers. On several occasions she has burst into tears during a meal and complained of pain in her finger, but when I ask her to point to where the pain is she says "it's fine".

She was playing with her developmental therapist yesterday and tried to stand up and screamed out in pain. I contacted Dr. Esposito and he said there was a chance she bent the rod, but most likely things would be OK. We went and had X-Rays taken just to be sure. The local ortho felt that everything looked OK, but we are waiting to hear from Dr. Esposito for confirmation.

Molly has been in relatively good spirits today, with the exception of some toddler tantrums. She scared us today a few times crying out because of a finger and then Howie (our pug) jumped up on her feet while she was in the highchair. My nerves are shot, but she is holding up well.

Jim is in California for work and his mom, "Gram", is here to help.

We realized that French Fries are apparently called "French Eyes", which we think is very cute. She has been doing a lot of pretend play and really likes pretending to cook food and say "it's hot, hot, hot" and loves to pretend to drive on the school bus and have her toys get on the "bus" with her.

Steady Improvement

Molly has seemed more and more comfortable as the week has progressed. She still needs her pain medication, but it seems to be effective for a lot longer.

We had a rather "interesting" afternoon yesterday. We were trying to organize the house while Molly took a nap. I was installing a drying rack on the wall in the laundry room. I used a stud finder and then began drilling. The fourth hole hit the hot water main line and scalding hot water began shooting straight out of the wall into the laundry room. It was quite a comical scene as my Mom and I found some buckets and began catching the water and screaming "I need another bucket" until my Mom figured out how to shut the water off on the water heater. Oops!

Thankfully, the plumber came this morning and it was a very easy fix.

Settling In

Our flight home was long, but thankfully both flights took off on time. We couldn't get the car seat unclipped from the first flight and they had to cut the seatbelt in order to break it free! We rushed through the Dallas airport to get to our second flight and arrived to hear them say that they didn't have seats for us. This was extremely frustrating since we had confirmed our flights and seats the day before. Thankfully they "found" seats for us on the plane, unfortunately they were in the last row on the plane.

We were so happy to get home. Everyone had a good night's sleep and Molly only woke up once, took some pain medication and went right back to sleep. She was tired, but in good spirits on Sunday.

We took her splints off yesterday and kept them off for a few hours to give her skin some air, in hopes of avoiding pressure sores.

Last night was a bit rough. She didn't want to go to sleep and was complaining of pain. After 40 minutes of patting and rocking she finally fell asleep. She woke up around 2:30 complaining of pain. We gave her medicine and took her splints off to check for pressure sores.
Everything looked OK, so it is hard to know what was going on. Jim and I had to take turns the rest of the night lying on the floor with her. She wasn't all that fussy, but couldn't seem to get comfortable enough to fall asleep.

We went to see Dr. Caudle, our local orthopedist, and they removed her bandages and said everything looked good. She has the beginning of a pressure sore forming on one of her ankles and seems fairly comfortable without the splints on, so they recommended we not put them back on. We'll keep the arm cuff on her upper arm for another several weeks while the bone heals. She hasn't had the splints on since 10 this morning and seems to be doing OK.

No splints is another big step on our recovery path. Here's hoping we all have a better night's sleep tonight. :)

Leaving on a Jet Plane

We got out of the hospital yesterday and fresh air has never smelled so nice! I didn't leave the hospital all week, so the change of scenery was wonderful for Molly and the rest of us!

Last night was a little bumpy, but all in all went OK. She was tired and still in pain, so it was difficult trying to return to life "on the outside". We had a few meltdowns and it was hard to tell how much of it was just an adjustment to being out of the hospital and how much was pain. She fell asleep at the table at dinner and slept through the whole meal. She woke up happy and ate a good dinner in the hotel. I had a very difficult time with her being so fussy. She said "I'm scared" a lot and said she needed something for her knee. I think her pain is definitely much better, but when things are quiet or she is tired or hungry I think it is still too much to handle. It is so hard seeing her in pain and this has been a long 10 days or so of pretty significant pain. I look forward to getting her past this surgery and hoping for a few low pain months.

She was absolutely adorable as we fell asleep last night. She chatted to herself in her pack 'n play and Jim and I silently "roaring" with laughter. She announced (to no one) that she had "poop all over her body" and then spent quite a bit of time talking about and to Clifford. There was someone dressed up in a teddy costume at the hospital as we went to check out and, unlike the time with Clifford, she held his hand a posed for a picture. She liked it so much she refused to let go! We finally convinced her there were other children that wanted to see teddy and she reluctantly let go :).

We are now in the airport in Omaha getting ready for our flight home. It has been a long trip and we are all looking forward to being in our own house.

Thank you to all of you for your continued emails. It has been wonderful to know that there are people thinking about Molly and wishing her a speedy recovery.

Gettin' Outta Here!

This is a wonderful hospital and they have taken very good care of us, but we are ready for some new sights! These four walls are starting to feel rather suffocating.

Dr. Esposito stopped by late this evening - after 4 appointments and 4 surgeries! He thought everything looked good. He changed her bandages and cut her splints to just below the knee, which we're hoping will keep her comfortable, but not get in the way.

We're supposed to keep the splints on as long as she will tolerate, which he thought would be another 1-2 weeks. We're not supposed to allow any standing for 4 weeks in or out of the water. We're supposed to do some stretches both of her knee and ankle several times a day. We're hoping that keeping the splints on and putting standing off for several weeks will possibly allow her bones to heal and avoid non-unions.

We had them remove the needle from her button (port) this evening and just before doing so noticed that her diaper exploded all over her bed and some got on to her port. This seemed scary to me, but the nurse assured me that it was nothing that several alcohol wipes couldn't clean up.

Jim and I have watched WAY too many kids videos this week and it has really started to wear on me. We have watched 3 or 4 videos in constant rotation and that has added to our feeling of isolation. I can't wait to be back home in our own house!! Two more sleeps :)

Some new pictures from Omaha

Here are some photos of Molly over the past couple days.


I was working on my computer when all of a sudden I heard: "Hey! Take my picture" She then posed with her ice cream in front of her mouth for this picture.



This is the new arm brace that Molly has for her arm fracture.




















This is the fish tank in the lobby waiting area. Molly loves looking at the fish. This was Molly's first time out of our room after the surgery.















This is the fountain that Molly loves to throw coins into.















As crazy as it looks, this has been one of Molly's favorite positions as she has started to feel better. She certainly is flexible!















The nurses have been wearing masks while accessing her port. Molly got a kick out of wearing the mask as well.















Here is one of the dogs that Molly had fun patting this morning..

A good night's sleep for all

We are all feeling a little more human this morning. We had very few interruptions during the night. Molly woke up around 2 complaining of pain in her knee. We gave her some medicine and that seemed to allow her to sleep more soundly.

She is looking and acting more like herself. She is quite uncomfortable for diaper changes and when I pick her up, so we have minimized that as much as possible.

They had some therapy dogs up on the floor and we had a nice time visiting with the dachshund, pug and golden retriever.

We are still waiting for Dr. Esposito to come by to check her legs and to find out about when we will be discharged. We are assuming since we haven't heard that it will probably be tomorrow.

Doing Amazingly Well

Molly has made a remarkable recovery today. She still is in pain and needing medication, but she is chatting up a storm and sitting up. She ate a very good dinner tonight and to share too much information... had her first bowel movement - which is a good sign.

We took a field trip down to visit the fish and the man-made stream that's running through the lobby. Molly practiced throwing pennies into the stream and had a ball.

She was fitted today for a brace for her arm, which I think will be wonderful, especially as her arm continues to heal. The brace just goes around the upper arm and allows her to bend her elbow, but so far she isn't feeling comfortable moving it very much.

We haven't heard anything about when we might be heading out of here, so our guess is that it will be Friday.

Thanks again for all of your wishes and emails. It is nice to hear from people when you are stuck in a hospital room. Thankfully, Molly is feeling leaps and bounds better, which makes everything much more tolerable.

A Much Better Night

We all got some well needed sleep last night. Molly was up several times in the night and we left the TV going quite a bit, but she still got a lot more sleep than the night before.

She woke up relatively happy and asked to play with the toys we borrowed from the playroom - a very good sign. She took her prevacid (by mouth) with only a little prodding, so hopefully oral meds will be a bit easier today.

She is complaining a little of pain in her knee and seems to have pulled the ace wrap away to look and saw the bandage where he made an incision, but seems to be OK.

Thanks to all for you messages. It makes Jim and I feel wonderful and I have been passing the messages along to Molly, who seems to enjoy it as well.

A picture and video after surgery

Molly's spirits lifted considerably after Sarah crawled into the tiny hospital bed with her today. Here is a picture and video.

CLICK HERE for video of Molly talking after surgery

Field Trip

We took our first "field trip" out of the room today. She asked me to pick her up. I assumed she would cringe when I started to try, but she did very well. I held her as long as my arms to could manage and then we placed her in a wagon for a trip around the floor. We visited the playroom and she seemed to really perk up playing with some toys.

She tired quickly and is now napping, but whimpering a bit in her sleep.

She took some pain medication orally, which is a good sign, but isn't drinking or eating more than a sip yet today.

The plastic velcro strips that keep her ace wraps on have rubbed her a bit raw in a couple of areas. We were so focused on the big stuff we didn't dare move her for things as simple as this. I look forward to all of this being "water under the bridge".

A Slight Improvement

Molly has been refusing her oral medications this morning, which is quite unlike her. We have changed as much of them as we could to be given through her IV and she seems to be in better spirits. She ate a little bit of bagel and is now napping, which is a very good sign.

The hospital crib has a weight limit of 350 pounds so I got in there with her for an hour or so and that seemed to soothe her quite a bit.

I will try and update soon.

Three Tired Sullivans

Molly was up and eating a popsicle last night, which had us hopeful for a good night, but her pain was not really in control for most of the night. She dozed off for 5-20 minutes at a time and then would wake up crying and asking for one of us. We took turns patting her and holding her hand for most of the night.

The Morphine made her itchy, but seemed to help at least a little with her pain. She is now ornery enough that we can't really give her her oral medicines and getting a temperature was impossible. I think she is feeling out of control of things and this is a way for her to be in control.

We are waiting for Dr. Esposito to come and check on her and maybe he will have a suggestion that will make a difference.

She has complained a few times that she has hurt her knee, which I am assuming is when she makes a small movement with her leg.

Hopefully she will begin to feel better by this evening.

Surgery updates

[1:15pm central time] Molly was in good spirits as they took her away for the surgery.

[2:00] Just got the update that the prep work is complete, and the operation is under way.

[3:10] They are still working on the first leg, and it will still be a while until the surgery is complete. Molly is doing well.

[4:15] They have finished with the left leg, and are now moving on to the right. There has not been a decision yet about rodding her arm.

[5:30] Surgery complete! We just talked to Dr Esposito, and he said the surgery went well. He decided not to rod her arm. They will be creating a molded plastic splint for her arm in the next couple days. Both tibias now have f-d rods, with one osteotomy (break with an incision) each.

We should be able to go see her in about 45 minutes. Dr. Esposito thinks that the recovery should be much better than last year, since we didn't have to touch her femurs.

She will have splints on her legs for 3-4 weeks, and we won't do any baths or water activity until after that point.

He said her knees will be the most sore part because he has to insert the rod through the knee joint. She had a slight non-union in the right leg as well. The fracture from Friday was only a crack, which is what we figured based on her behavior and comfort level.

She will be on Morphine, Toridol (IV Ibuprofen), Tylenol, Tussionex, Valium (for spasms) for the next 24-36 hours.

We are now just extremely anxious to see her. These next 30 minutes will really drag on.

[10:45] We are in our room and happy to be together. She has been doing remarkably well. She has slept a little off and on amongst all of the nursing activity. We are trying to figure out the best pain management regimen for her. She hasn't needed any Valium (for spasms) yet, which is a good sign. She has asked for a lot of "nails", which means patting her belly with our fingernails, and has wanted us close by.

She has just woken up and asked for a snack and just had half a popsicle and some jello. We are already seeing glimpses of our wonderful little girl.

We have watched the same few videos over and over and that seems to be doing a good job of keeping her mind off the pain.

One Tough Little Cookie!

Saturday was another very long day. She woke up very itchy and had a rash over most of her torso. We called the pediatrician and got an anti itch medication (Atarax) called in that is a bit stronger than benedryl. We have guessed that it was due to the Tussionex, which is a hydrocodone pain medication, that caused the itching and rash. We have now stopped the Tussionex and are going to see how she does on just Tylenol. After returning from picking up the itch medicine I checked her leg for pressure sores and found the very beginning signs of a pressure sore on the back tendon of her ankle. Ugh. We took the splint off, and called the ortho's office. They said we could try leaving it off and see how she did.

Saturday night I spoke with a mother of a little boy that is very severe (he fractures 1-2 times per week) to get some advice about possibly rodding her arm and also about splinting etc. She said that he has rods in all four arm bones and has done well with them. She warned us that we should splint her at night even if not during the day, because what started out as a small fracture could become a big fracture during the night since she won't be able to protect it like she does when she's awake.

Yesterday (Easter) we had a quick Easter Egg Hunt, which was a lot of fun, and then packed up the car to head to Omaha. The drive was relatively uneventful - other than a snow squal or two along the way!

It is now Monday, surgery day, and Molly is doing relatively well, but I think she is aware of what is going to happen. We pointed out the hospital on our drive in last night and have mentioned Dr. Esposito etc.

We will try and keep you posted during her surgery as to how she is doing. We will be talking with Dr. Esposito this morning about whether or not we should rod her arm as well.

Please keep Molly in your thoughts today. :) She is one tough cookie, but I'm sure could use some cheerleaders to get through today.

A Very Long Day

We arrived here in St. Louis on Thursday and things were going relatively well, considering Molly's arm fracture. We were having a good day on Friday, until Molly fractured her right Tibia. She was on the ground and suddenly we heard a sound and then a terrible cry. We had been on the phone with Dr. Esposito (the surgeon in Omaha) less than an hour before to discuss Molly's surgery and the recent Humerus fracture. We called him back with this new fracture and he called an orthopedist, Dr. Gordon, here in St. Louis and had us head over to have him splint it for us.

Dr. Gordon was very nice and seemed knowledgeable. He didn't think we needed to X-Ray it since we will be going to Omaha on Monday for surgery. He had them make a splint and warned us to watch for pressure sores. Pressure sores can form within hours and if she has one they won't be able to do the surgery on Monday. Those are very high stakes, so we will be trying to keep a close eye on things and hoping for the best.

We all had a fairly good sleep last night and Molly is in good spirits. She isn't mobile like she usually is and only has use of one arm, but she seems to be a "glass is half full" kind of girl and hasn't been complaining. It is amazing how she has figured out how to do things with just her one hand. I would have predicted that she would say "I need help" all the time and would be getting very frustrated, but so far so good.

I think we will take it easy today and hope to all get some needed rest and relaxation. We will be driving to Omaha tomorrow and then waking up nice and early on Monday for her surgery at 1:00 central time.

Arm Fracture

We have had a long night, but we're hanging in there.

She was just pushing up on her arms and I heard a "snap". We headed down to Pinehurst to see our friend Dr. "Mary" who was working in the emergency department. We took some X-Rays and found out that she had a complete fracture of her right humerus (upper arm) that is slightly displaced. She was fine until we went to do the X-Rays and then when we made the splint. We have a splint from shoulder to wrist with her arm at a 90 degree bend. We have ace wrapped her arm to her body and she seems to be relatively comfortable.

We came home at 1:00 and all slept in our room. She slept until 6:30 this morning at which point I think her pain medicine had worn off and we are now up for the day.

We are still planning on flying to St. Louis and going through wth the surgery in Omaha. There is a chance Dr. Esposito will have to set or rod her arm as well. We will keep you posted.

Here are the x-rays from last night:

Molly's First Easter Egg Hunt

We had a good day here - beautiful and sunny this morning. We got some PVC pipe to make some parallel bars for after surgery (we will post pictures) and some plywood to make a support for her legs in her wheelchair after surgery.

We then headed to an Easter Egg hunt down the road and had a great time. I was apprehensive about how we were going to allow Molly to participate safely, but they had a "peanut free" zone and there were only two children there, which was perfect for Molly :). She got to crawl around and collect eggs like the rest of the kids.

We getting anxious for our trip and for Molly's surgery, but hope she will be albe to be more mobile after the surgery and have less pain.

Molly and I met up with "baby Abby" on Friday. Abby is just over 1 and also has Type III OI. She is doing well and seems to be gaining head control. I got to hold her for the first time, which was very fun. I love little babies and there is something very special about having another little girl with OI in our lives. Friday night we went to Amanda's (the 11 year old with OI) church and watched the pinewood derby races, which we all enjoyed. Amanda and Max both came in first and now move on to the regionals tomorrow :).

Toddlerhood

Molly is doing well, but keeping us on our toes. She has started testing the limits and continues to do things we have asked her not to. I caught her throwing peas on the floor for the dog. I asked to please not throw the peas and then stood back and watched her little hand pick up a pea and drop it to the floor. I took the plate away and said "Mommy asked you not to do that" and she replied "But I do it" - charming. I had to walk away to hide my laughter.

She has been bringing more and more stuffed animals and dolls with her to bed. She has been bringing "Ashley" to bed and the other night said that Ashley wanted to sleep with her bunny, but that she did not want to share it with her. This continued for several nights - too funny.

Today we did some gardening together, which was very fun. I looked over and she said "clean my mouth" - she had tried eating some dirt I went back to gardening and then heard her starting to gag and noticed dirt all around her mouth. This afternoon while out for a walk she announced, out of the blue, that "I don't want to eat dirt" - hopefully a lesson learned :)

She seems to be over the stomach flu and I think her leg is not bothering her as much. She is cruising around the house and using the walker a little bit as well.

We are in a new phase where she only wants me all the time and it is exhausting for me and frustrating for Jim. We are hoping this will be a short-lived phase.

Here is a link about a woman of 28.5 inches with OI recently gave birth to an 18" baby CLICK HERE. It is wonderful to see stories like this. There is a video of the mother on the right hand side of the article.

Molly's X-Rays Today

We had a very busy day today. We had 4 women here from Early Intervention to put Molly through some diagnostic testing. We are trying to apply for services for Molly in hopes of getting both some in-home help as well as an Aide for Preschool. They had a psychologist, pediatrician and PT here to test her. She tested above average for language, just below age level for fine motor and at an 11 month level for gross motor.

I was starting to question whether I jumped the gun and scheduled her surgery sooner than I should have. Today she complained of pain in her left leg and then pointed right where the non-union (unhealed fracture) was. Well, we had X-Rays taken today and both the Tibia and Fibula (two lower-leg bones) have unhealed fractures. Poor thing.

She did amazingly well during her X-Rays. She didn't cry at all and stayed still while they took the films. It is amazing how far she has come at such a young age.

We have scheduled her surgery in Omaha for March 24th. I am now feeling thankful that it is as soon as it is. Her spirits continue to be good.

Top View X-Rays, the leg on the left (with my finger) is her right leg:


Side view (again, her right leg is on the left in the picture). You can see fractures of both bones on her left leg (right in the picture). Click on the picture to see a larger view:

Doing well, but Scheduling Surgery

Wow, I didn't realize it had been so long since I last posted. We are all doing well. Molly has been talking more and walking a lot lately. We have noticed that she has been limping more. I had assumed she was limping because of increasing bowing in her right Tibia, but upon further observation it is the left leg that is bothering her. We had X-rays taken in December and Dr. Esposito noted that she has a non-union (a fracture that has not healed completely) in that leg. She has started complaining of pain in that leg and pointing to the spot with the fracture.

I emailed Dr. Esposito today and he called us back this evening - what an amazing doctor. He said that if the leg is starting to bother her so much that we should have some X-Rays taken and try and schedule the surgery when his schedule allows. I know that this is the right thing to do, but it is terrifying to prepare to go through that process with her again. He said if it is hurting her more and more that there is a good chance that it will fracture completely if we don't do surgery. So... I think she will have surgery on her two tibias in the next month or two. Yuck.

Molly and I were at Lowe's today getting a part for the shower and she was in her wheelchair - doing amazingly well navigating all around. A woman in her 60's came up to talk to Molly and said that kids with special challenges have a special place in her heart. She shared that she had a baby with a congenital heart defect that only lived 3 months. I asked if she had any other children and she said the doctors wouldn't let her have any more children due to her diabetes. It gave me a whole new perspective on how parents cope with their children's diagnoses. Given the choice between a child with a profound disability and no child at all, I think most people would choose to have a child with a disability. I know we all learn to appreciate what we have, but I was having a hard time imagining how parents cope with their severely disabled children. Speaking with this woman gave me a new appreciation as well as respect for families with disabled children.

We have had a good few weeks. Molly has been having some temper tantrums, which are scary at times. She is quite dramatic and she and I are sometimes battling over her daily routine. We went to a book store last week and they had someone in a Clifford costume, which was quite traumatic for Molly. She waved at him very energetically, but didn't want to get to close and was terrified to be closer than 20 feet away. She has told the story over and over of seeing him and does so with an almost manic demeanor. Her eyes start to bulge and she speaks rather quickly, recounting that she waved to Clifford and said "Hi Clifford", but she didn't touch him and his tail "wagged back and forth". She tells the story over and over and it is adorable!

Here's a picture of Molly talking about Clifford's tail:


My Mom was in town last week and Molly and I got some well needed time apart. I also got to go to the NC beach on Monday and Tuesday to spend a couple of nights with a group of women. It was so nice to go to a different location. The weather was gorgeous and I loved listening to the waves and breathing some of that wonderful salt air.

Sweetest Little Girl

I was feeling sad last night and Molly came over and said "Hold You" and then said "No cry Mommy" and "Mommy OK". It was the sweetest, cutest thing I have ever seen. She is so sensitive and is such a sweet little girl. It is one of those moments I hope to never forget.

I am having some difficulty trying to figure out how much I should be medicating her. She has been complaining of pain now and again in her legs, but also says things like "Howie Hurt Me" when sometimes he isn't even in the same room. She has been much better since receiving her Pamidronate on Friday, but still doesn't quite seem herself. She has had a cold for a while and it may just be that she isn't feeling well, but I always worry that she has pain that is not being treated.

We are starting to look at preschools for Molly for the Fall. She loves kids and it has been difficult finding opportunities for her to safely interact with her peers. We have found 1 preschool that is willing to take her and has even helped us find someone interested in being her 1:1 aide. The only down side is that we will have to pay out of pocket for the aide as well as the school. At least we have found a place willing to take her and willing to adapt the classroom to better suit her needs!

Infusion #14

Molly climbed inside of Tripp's laundry basket and we just had to take a picture...

What? Do I have something on my face?


Molly and Livie enjoying a meal side by side :) They were passing food and utensils back and forth - adorable...


Oops. I was talking with "Dr. Mary" on Thursday (she has a daughter and an adopted son with OI and also is an ER doctor) and telling her how Molly has seemed fussy and complaining of pain. She informed me that we shouldn't be pushing the doses farther apart until we increase the dose she receives. Thank goodness she told us! I called the home infusion company immediately and they overnighted us her medication and the nurse squeezed us in to her schedule on Friday. We went and had her weighed (the medication is dosed based on body weight) and she weighed in at 22 lbs and 15 oz (10.4 kg). She has grown quite a lot. We need to start measuring her height to get a better sense of how much she has grown.

I am feeling quite frustrated that we aren't getting more guidance from the doctors in Omaha regarding her Pamidronate Infusions. I had the pediatrician's office fax all of her recent infusion results to Omaha for the new doctor, Dr. Lutz ("Lootz"), to look over. I received a phone call from someone named "Rose" from Omaha who said she looked over her lab results and her Calcium levels looked fine and that was all they were concerned about. This is not at all what I was hoping to get back from them. We will set up an appointment to see Dr. Lutz whenever we go out for Molly's surgery, but I was hoping he could be a bit more helpful in the meantime. Thanks goodness for Dr. Mary.

Molly has a cold that still seems to be hanging on and is running a little bit of a temperature. We were supposed to go to a birthday party, but opted not to in case there is more to her fever than just a cold.

She is starting to say some very funny things and is often talking in sentences. "Put the diaper on my body", and today she started saying "I disappear" (copying Jim) as she would hide around the corner - very cute.

Her spirits seemed better even half way through her infusion yesterday, but is continuing to be a bit whiny. It is hard to know how much of this is age and how much of this is because she doesn't feel well due to the cold and how much of this is due to bone pain.

Molly walked all around the hot tub yesterday and then took many steps without holding on to anything! She has started saying "I do it myself" a lot more and "Look at me Mommy" when she has done something on her own, so working on her independence is a new priority.

We went to an open house at a local preschool on Thursday night and really liked it. Molly loved seeing the classrooms and walked all around. Everything was at a great height. They even had these VERY tiny little table and chairs that were small enough for her to sit in all by herself, which she loved.

We are in the midst of trying to figure out what services will be available here in Wake county and what we will be responsible for on our own. There are some public preschools in the area, but from what I have gathered so far they are a special needs environment and not an inclusive environment, which is not acceptable to us. I am beginning the process of trying to find out about PT, OT, a 1:1 aide etc. and also which of these services would be able to travel to her private preschool.

More Mobile and Talkative Than Ever

Molly in her first "big girl" bathing suit:
Molly starts off with small intentional strokes with her brush...

But shortly realizes it is much more effective to smear it all around with her hands...

Molly climbed right into her toy basket and proceeded to call it her car

Molly has been walking a lot the past few days all around the house. She has been using our hands for support and walking from room to room, which is very different than in the past. Up to now in the house it has been a planned activity and generally she chose to crawl or be carried rather than walk. I don't know what has made the difference, but she seems to be doing well.

She has been a bit crabbier lately and complaining of pain in her legs, arms/hands and her cheeks (I think the cheek pain is her 2 year molars coming in). It is hard to figure out how much pain she is actually in. I am on edge again like I was before her last surgery. It is difficult knowing that she has a partially healed fracture in her left tibia and progressive bowing in both tibias, especially her right. She woke up crying several times in the night on Saturday night, so we gave her ibuprofen before bed last night, which seemed to help and she slept through the night. It is difficult knowing that she is in pain and also trying to determine what level this pain is at. I think as long as she is eating and sleeping we can assume it is under control for now.

We had water therapy today and she took several steps in the water without holding on to anything, which was a HUGE milestone. I think it was similar to when a parent sees their child take their first steps on land, but maybe even more special. She wore a new bathing suit with inflatable pillows on the front and back, which seemed to give her the ability to "swim" by herself by just holding on to a pool noodle. I noticed today that she has definitely grown quite a bit in the last month or two. She stood on the bench at the therapy pool and the water hit her quit a bit lower on her body. She is now wearing some 18-24 month shirts and 12-18 month pants! It is amazing to think she was in 3-6 month clothing this past summer!

We also got a new walker today (a hand-me-down from another patient of Molly's PT) and she said she liked her new walker and called it pretty and said it was fun! The front wheels swivel, which allows her to navigate around much more effectively. It is a lot riskier than the other walker, but also allows her to get where she wants to go.

My brother, Tripp, drove down from outside of Pittsburgh this weekend and Molly (and the rest of us) had a great visit. She was excited for him to play with her toys and showed him all around the house.

She is getting older by the minute and now really enjoys playing games. We often play "hide-n-seek", where we "hide" around the corner etc. She also likes "I Spy" and is now even trying to come up with her own things to spy. We came up with a new game this weekend where we hide a few toys and ask her to find them, she seems to think this is a lot of fun.

Now that Molly is 2 her infusions are pushed out to 3 months apart. Up until now they have been 2 months (6 weeks when she was quite young) apart. I am hoping that she does well with a longer period of time between treatments. The kids complain of bone pain, fatigue and increased fractures when they are getting close to their next treatment. We are hopeful that she will tolerate another month. She will have her port flushed on Friday and then her next infusion a month from then.

There is an OI conference this summer (August 1-3) held by the OIF in Washington and we are getting really excited to learn more and connect with families again. We had such a positive experience at the last conference in Omaha (2006). I hope get to see all of the same families again and hopefully meet some new ones. It will be interested to see how Molly reacts, but I'm sure she will LOVE seeing all of the kids.

Here is a video of Molly walking with her old walker.

Hot Tub and Ortho Phone call

Molly is doing very well and coming up with new tricks by the day.

We bought a used hot tub for Molly's water therapy and it arrived on Wednesday. We have all been very excited for it to come and have really been enjoying it. There is a seat shallow enough for her to sit at and she can stand on the other seats. It seems like it is going to be perfect for her!!

I spoke with Dr. Esposito (the Orthopedic surgeon in Omaha) and we discussed the X-Rays we had taken in December. He thought that her femurs looked good. The FD rods are expanding nicely. The top of the rod is still extended beyond the bone and is in her bottom tissue, but she hasn't been complaining about it and he said that this was better than it being sucked up into the bone. Her tibias are bowed and the right more than the left, which we already knew. She has a partial "non-union" in her left tibia with some "bridging", which means that she had a fracture (I think from sometime around June) that has not completely healed. The "bridging" means that there has been some healing, but it should have been healed by now. She has not been complaining about pain in that leg, so hopefully it is not causing her a lot of discomfort. The right tibia is bowing and now it is just a wait and see as to when we re-rod her Tibias. It looks like she is big enough now to have the telescoping (F-D) rods in her Tibias, which should give her more time with the next set of rods. You need 4mm in the growth plate area and she is measuring at 6mm.

The plan now is to wait and see how she does. She is walking more, but she is also walking with more of a limp than before. As long as she is tolerating walking and weight bearing and she isn't complaining of pain and doesn't have a fracture we will hold off her surgery. He felt that we will be able to splint her if/when she fractures a Tibia and schedule surgery within a weeks time. It is hard for me to play this waiting game, but the longer we can wait before her next surgery the better things will be for her. He said that her bones looked much better and more normal than they did for her last surgery, which should make things a lot smoother for surgery.

I discussed my anxiety about going through the post-op recovery that we went through the last time and he felt that it would be a lot better this next time around. He can use a tourniquet to prevent the blood loss she had during the last surgery (because her femurs have rods), so she won't need a transfusion. It should also be better because there will be fewer osteotomies (bone cuts) and fewer bones involved. Molly had elevated PT/PTT blood test results (these have something to do with bleeding and clotting? I think) and therefore they were not able to give her an epidural for that initial recovery period, which would have been so helpful.

We need to be sure and have X-Rays taken from both the top and side view in the next 3-6 months in order to better determine how her Tibias look and to help Dr. Esposito come up with a plan. I hope that we get to the point that we decide to schedule these X-Rays and don't have to go in because of pain she is having.

Dr. Esposito also asked how her arms were. This is the first time that has come up. It makes me a bit anxious to think that we might also have to address fractures and rods in her arms. We will have to keep our fingers crossed that we are lucky enough to avoid this completely - I can wish at least :). He said that you can rod the Humerus (upper arm), but there aren't rods that are particularly effective for the lower arm. It sounds like a lot of the arm complications occur after an arm fracture. When the arm heals and there is a bow, it will simply get worse from there or can have non-union complications etc.

I am sure I will remember more from my discussion with Dr. Esposito. I'm glad to have that all down on "paper" for our records :).

Here are a couple of videos...
Molly in her new hot tub CLICK HERE (poor quality, sorry)

Molly says "Cockadoodledoo" CLICK HERE

"I put ketchup on my sandwich, it tastes good"
"I sit HERE" as she pushed the foam out of the way that I had placed there to prevent her from sitting there. This is one determined little girl!

"Daddy toot...pfffft (her sound affect)"

"My name is Lisa" (and holds her hand out to shake hands)
"My name is (Mommy, Daddy, etc."
"Call Livie...(on plastic phone)... Hi Livie, come to my house and play with toys"

Molly is 2!!!

It is hard to believe Molly is already 2!! We had a wonderful day today. She was happy and active all day. She is talking more by the minute and was extremely happy to have all of her friends here to celebrate.

It was emotional leading up to her birthday and thinking back to when she was born and all that we went through, but I didn't find myself thinking about any of that today.

She has been doing more and more standing without holding on and here is a video of her showing off her new trick CLICK HERE.

Sorry for the break in postings, but things have been hectic around the holidays. Molly is doing well and keeping us very busy.

We had a wonderful trip to Maine and a great Christmas with my family. Molly loved their cat (Tony) and seemed excited by the snow. We bundled her up to play in the snow and she was interested at first, then I made the mistake of sitting her in the snow at which point she announced "I need to poop" and we headed in. My parents have a hot tub and we were in it everyday. She seemed to feel better and have more energy after she got out.

She amazed us with her ability to remember names and she loved wishing people "Merry Christmas" by name.

We drove down to Massachusetts for a night to see my Mom's extended family and had a nice visit with everyone. We visited old co-workers on the way back to Maine, which was a nice bonus to our trip.

We were happy to get back home after a ten day trip.

We picked up her new power chair the Wednesday before we left and finally got to let her drive it when we got back. She took to it relatively quickly and is now asking to go out and drive it (or "turn" as she says). She really goes in whatever direction she wants and is doing a fairly good job of listening when we say "stop". We had our scariest incident happen this evening. She was driving down the ramp outside and one of the wheels clipped the railing at the end and spun her a round and the railing came within a couple inches from her face. We feel EXTREMELY fortunate that this ended as well as it did. Thankfully, she wasn't shaken by the incident and happily drove all over the neighborhood.

We still have not figured out the best kind of lift to get the chair in and out of the van, so we haven't been able to take the chair out and about but hopefully we will have it figured out soon.

Molly's talking is improving by leaps and bounds. She is now stringing 3 and 4 words together and saying more and more.

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.