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: