Saturday, March 29, 2008

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.

Thursday, March 27, 2008

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.

Wednesday, March 26, 2008

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.

Tuesday, March 25, 2008

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.

Monday, March 24, 2008

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.

Saturday, March 22, 2008

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.

Thursday, March 20, 2008

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:

Saturday, March 15, 2008

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 :).

Sunday, March 09, 2008


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.