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!!