A Very Happy and Busy Girl

We have been busy, but doing well.  Molly is walking more and more and we are still working on finding her limits.  She starts out almost running with her walker and then slowly looses steam.  She is learning to listen to her body and tells us when she needs to take a little break.  She is extremely excited about walking and asks to walk most places we go.

We watched "Return to Neverland" this weekend, starring Tinkerbell, and Molly asked "can you get me some wings so I can fly....PLEASE mommy?"  Absolutely adorable :).

Howie, our black pug, had surgery on his leg a little over a week ago and had a pin put into his leg.  It was strange going to the vet to see X-Rays of our dog rather than Molly.  We just found out today that the surgery was not successful and he is going to need to have a second operation to try and fix his leg.  

We were planning on taking Molly to the beach last weekend, but a forecast of thunderstorms and high winds forced us to postpone our trip.  Molly hasn't been to the beach yet and I know she will have a ball!!

Molly has started introducing herself as Ariel (from the movie The Little Mermaid) and sometimes will correct you if you refer to her as Molly.  She seems to have become more than a little interested in princesses and tinkerbell.  

Here is a video of Molly walking at the library with her wings on :).  

Good, Great and a Little Bad

Molly is doing well and walking more than she ever has before.  We got an Exogen Bone Stimulator for her that we have started using to help heal her Tibias from her last surgery. The bone stimulator sends ultrasonic waves that some feel help with the healing of non-unions.

We had a long week last week and she finally got her Pamidronate on Saturday.  We were hoping that it would work a miracle and that Molly would stop being fussy.  She seems to be feeling better, but not 100%.  My Mom got into town on Friday and that has made a HUGE help to my mental health :).  

Molly's gums were bleeding last week when she was eating so we went to have a check up with her dentist.  Her teeth have worn down quite a bit and it is time to schedule her surgery.  This was news that Jim and I were not ready for and has been a bit challenging to digest.  We have scheduled the surgery for September 17th, but if there is a cancellation it could be a lot sooner.  It is hard to prepare for yet another surgery, especially at a different hospital where I am not as confident that the staff will know how to handle her.  I know I will be sure to educate the staff between now and then.

Molly has been walking for many minutes at a time and today for the first time walked down the ramp (our front stairs), down the driveway and was starting to walk down the street.  We need to be sure that we don't let her overdo it to quickly or she might be sore for quite some time.  We are still giving her Ibuprofen for pain to manage general pain as well as pain she is complaining of in her knees.

I have a lot more to update, but I am too tired to write anymore tonight...

Ups and Downs

I just finished writing a post about how Molly improved and an hour later she woke up crying.  I went up and she complained that she hurt her arm and was crying.  This was almost too much for me to handle.  I rocked her and she calmed down.  When I stood up to take her downstairs she whimpered and said her arm hurt.  I brought her down and she begged me not to put her down because it would hurt.  I have learned that it is easier to keep her comfortable when she is sitting on her own and so I put her on her "Elmo couch".  I told her I was going to get her medicine and asked her if it hurt a lot or a little and she cried and said a lot.  It was devastating to hear her in so much pain.  She kept her arm limp at her side.  I asked her to point to where it hurt, but she wasn't willing (or able) to.  

I assumed the fracture was at the same spot as the fracture 9 weeks ago and so I put the splint on the upper arm to see if that made her any more comfortable.  She didn't seem much better or worse with it on.  Our wonderful neighbor, Lori, came over to play with her and read books, which helped raise both our spirits and Molly seemed to be doing well.  We decided to go and have an X-Ray taken just to be sure things were OK, since there isn't a rod in the arm.

It has been a long and emotional week and I hope that Molly has a better week next week.

An amazing recovery

I took the splint off on Tuesday morning to check for sores.  She screamed and begged for me not to touch it, but once I got it off she said it felt better and she didn't want a wrap on it - I was not prepared for that.  We went to the orthopedists Tuesday and had x-rays taken.  It seemed that it was a minor fracture since she was comfortable without the wrap on, but she wasn't able to pinpoint where the fracture was so we wanted to make sure it wasn't in her pelvis and that her rods were OK.  Nothing showed up on the x-ray, which isn't a surprise, but is a good sign that it is only a crack and not a big fracture.  We came home and she started crawling!  She asked "Is this OK?" and when I told her she could do whatever she wanted since she would know what hurts and what doesn't.  Well, she stood right up after hearing this!  This is what Dr. Esposito predicted, but of course I thought he was being far to optimistic.  I'm glad he was right.

Certain movements and especially twisting still cause her pain and unfortunately I haven't been able to predict what will hurt and what won't.  We went to PT today and she walked around quite a bit with her walker for the first time since Sunday.  She wasn't quite as fluid as on Sunday, but seemed to being amazingly well.

We are very excited.  Sesame Street Live is coming to town and we just got tickets for Saturday.  I think Molly is going to have a ball!! 

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