Friday, December 25, 2009

Merry Christmas!!!

We woke up to a very happy and excited little girl this morning. She was excited to see that Santa came and brought her the two stuffed animals she asked for and some finger puppets and stocking stuffers.

She has been intoxicatingly happy. She has gotten in to the spirit of both the giving and receiving and went shopping with Jim for my presents and painted a picture on canvas for Jim.

We are heading to Molly's classmate's, Victor's, grandparents for Christmas "dinner" this afternoon, which should be a lot of fun. This is our first Christmas as a family without extended family and it has been a bit of an adjustment.

We went for ice cream last night and then drove to find some fun Christmas lights. We came home to sit by the fire and eat and enjoy being together. While Molly was standing eating her dinner she fell and it seems she might have a new fracture in her Right Tibia (the one with the cast on it). I was able to contact another OI family - that had experienced the same thing - and was assured we could at least wait through the night without an x-ray. She slept well and woke up happy, so either the fracture is very minor or the cast is doing an effective job of splinting it. Either way we are very thankful to not have to spend Christmas in the ER.

Friday, December 18, 2009

Molly's First Cast

We are a bit behind in our posting, but better late than never. After conferring with Molly's ortho in Omaha we decided to try our first cast to see if she could start to weight bear and walk with a cast on (the "walking boot" or black boot was just too heavy for her to be mobile with). She was terrified as we got ready to do it, but did amazingly well once she saw it was basically just wrapping the leg with some material. She was able to get purple and pink striped and they cut a "window" to allow us to use her bone stimulator (that requires skin contact at the fracture site).

She was able to get up on her feet that night and has been getting more and more interested in walking. We have decided that since she is up and mobile that it is reasonable to wait another 2 weeks and allow the fracture to heal enough so that she will be able to stand once the cast is removed. We did get a waterproof cast so that she could start to use a hot tub once we were able to get her one at our new house. We closed on the house on Monday and are now in search of a new or used hot tub that will meet our needs. Other OI parents have recommended that we not get the cast wet unless it is for water therapy (i.e. not in the bath), so bath time is a two person job. One of us in charge of keeping her casted leg (the right one) out of the water while the other does the washing. She has begun to complain off and on of her cast itching, but for the most part has handled it well (as usual).

Today was Molly's last day of school until the new year and we were able to go for most of the day to do family center time. It was great to see her in the classroom and really enjoying herself. They sang us a gingerbread man song (sorry no video) and she really participated in most of it, which is a nice change.

We are spending Christmas at home for the first time this year and hopefully we will create some nice traditions in the coming week. Our tree still needs to be decorated and I am hoping to find some time to bake/decorate some cookies as a family.

Merry Christmas/Happy Holidays to All :)

Saturday, November 28, 2009

Tibia Fracture (again), but with the right splint she is a much happier girl!

We got home from Savannah last night and after we all got settled we took a look at Molly's leg (her right) and concluded that it is the Tibia and not the femur. After we got that sorted out I made a fiberglass splint that goes from below her knee around to her toes. She had a good night's sleep last night and we are now weening her off of the oxycodone.

Jim and I spent today unpacking and sorting through our massive number of boxes and Molly did a wonderful job playing by herself.

Can't wait to have some pictures to post of our new house!!

Thursday, November 26, 2009

A Broken Leg, but still a very Happy Thanksgiving

We are in Savannah spending Thanksgiving with one of Jim's Aunt's. We came down late Tuesday night (a 5.5 hour drive) and spent Wednesday afternoon exploring downtown Savannah. Molly was cruising along a bench on a brick walkway and broke her right leg. It is hard to know whether her leg broke and then she fell or if she fell and then broke it, but we are guessing it broke first and then she fell. She is saying it is above the knee (femur), but there have been times she thought it was her femur and it ended up being her Tibia. I would guess it is her Tibia (right in the middle) where she has had a lot of fractures (there is a big knot there all the time because of all of the fractures). We need to take some follow-up fractures for her surgeon, so we will get a picture of what is going on sometime next week.

We are all moved into our new house, but still have a lot of unpacking to do. The house was built in 1958 and it has been a bit neglected in the past 5 years, so we have had some things to take care of. The bills went into our name on Wednesday and as soon as the water for the irrigation system was turned on it started spraying water all over the yard. Thankfully Jim caught it and the people that took care of our last house were able to come over in less than an hour. There is a $500 part that froze and is broken that we will have to replace if and when we want to hook it back up. We are loving the house and location despite these minor inconveniences. I have been able to walk Molly to school, which was WONDERFUL and we walked to another family's house for dinner one night and Molly got to play with several kids her age.

We are thinking since Molly broke her leg yesterday that we will probably head back to Raleigh tomorrow, but we'll see how she feels tomorrow.

I tried to pack everything we would need in case of a fracture, but forgot to pack the board we made to support her splinted leg on her wheelchair. When we were in the city we went to get her medicine and found that it had leaked all over the bag and there wasn't any left. Most of her pain medications are controlled substances and it is complicated to get them on short notice especially out-of-state.

Molly's spirits have been amazingly positive, which has made this recent fracture at least a little bit easier to accept. She was just starting to feel good on her legs and even walked 3 or 4 feet on Monday. I know that there are going to be lots of steps forward followed by steps back, but I think it will continue to be difficult each time. Of course we wish that things could be different for Molly. She is still of lots of smiles and joy, which is all we can ever ask for.

Wednesday, November 18, 2009

We're Moving (Today)

We recently put our house on the market to try and find a house that would be a better fit for Molly. We love this house (and especially our neighbors), but all of the bedrooms and bathrooms are upstairs. The house sold in 10 days and we close this Friday. We have been looking and wavering between buying an existing house and building one.

We have found a wonderful old ranch that is only 0.3 miles from Molly's preschool, which is at an elementary school. She will be able to drive her power wheelchair on sidewalks to both elementary school and middle school. I am beyond excited for the opportunities that this will open up for her. The house has a circular driveway in the front, which is perfect for Molly to be able to play in the front yard in both her walker and wheelchair.

The movers arrive in 2 hours and there is still lots to pack (so of course I am on the computer). Molly has a cold that has made sleep a challenge and prevented her from going to school this week. No the perfect timing, but whatever we haven't gotten done the movers can do. We are SO excited to move and be in a place that is so well suited for Molly. The new house has 3 bedrooms and the entire house has hardwood floors, which is perfect for Molly. The bathrooms leave something to be desired and there is no garage, but in time we will make this house just right for us. We won't close until next month, but the house was vacant, so we are renting from the current owner until we close. They say things always work out and in this case it seems things have worked out better than we could have imagined.

Molly is starting to feel a lot better on her legs (I think we're 5 weeks post-op) and she even walked with her walker in the new house. She was in the hot tub last night and bumped her right leg and immediately asked to get out. She has clearly cracked something, but within a few hours was attempting to stand for brief periods. We are all hoping that whatever is hurt won't slow her down for too long so that she can be back up and walking.

OK... back to packing...

Saturday, November 07, 2009

Oops - Missed October!

Things have been more than a little crazy here. We put our house on the market two weeks ago and got an offer on Tuesday! We close on the 20th of this month, so we are scrambling to pack up and figure out where we are going next. We have been looking for a while, but still have not found exactly what we are looking for. It seems we will most likely end up building, so we are going to rent for a while.

We found a house to rent down the street from Molly's school, but it isn't available until next month and I think we will need to do a little work to clean it up before we can move it (the rent is a steal, so we are willing to do a little ourselves). We can walk to Molly's school and there is another family down the street that we are becoming friends with and their son is in Molly's class.

Molly is doing well, but still is not feeling up to standing for more than a couple of minutes. She has been complaining of a lot of aches and pains and we realized she is due for her Pamidronate soon (the IV medication), so hopefully a lot of those issues will go away once she gets her medicine. The buyer is getting our hot tub, so we will be without that form of relief for the next several months, which will be hard.

Molly is definitely feeling a little bit out of sorts with all of the changes taking place. She doesn't want Jim or I to be more than a few feet away and is still having some issues with me leaving her at school, but that seems to be getting a little bit better.

We are all over the place with what we want/need in our next house. The thought initially was to get/build a ranch w/1 bedroom upstairs for guests. We then starting thinking about building one with one bedroom suite down and then having the rest of the downstairs be living space, but from talking to other parents they assured me that Molly would be going up the stairs to see what was happening and that no matter what whatever was happening upstairs would be where she wanted to be. So... we are back to thinking a ranch is best, so we will probably end up building and now it is a matter of finding a lot that isn't right under the airplanes, near the highway or so small you can touch your neighbors house. Let the adventure begin!

Tuesday, September 29, 2009

Home and Healing Nicely

We have been home since Saturday and I think we have all gotten some well needed rest. Molly was wearing "Wee Walkers" (black walking splints), but after seeing how little mobility she had and noticing how uncomfortable she was when I picked her up (they pulled down on her legs because they are rather heavy). So, I made some fiberglass splints and that has made a tremendous difference both in her mobility and her comfort. I still need to set an alarm to give her medicine during the night, but she generally stays asleep while I do that and is sleeping all night long.

We have decided to sell our house and look for a house that better suits Molly's needs and also is hopefully closer to Jim's work. We do not have any bedrooms on the first floor, which means we carry Molly up and down the stairs every day. We are thinking in the next year or so that will become much less age appropriate and more challenging/dangerous as she gets bigger. It has been a challenge to try and stay focused on this while taking care of Molly and managing her post-op care. We are rather big collectors of "stuff" and therefore have a very big challenge to try and get the house in order.

Enough procrastinating... off to do some work :)

Saturday, September 26, 2009

Back Home in NC

It has been a long week and we are all very happy to be back at home. I am hoping Molly will have another good night sleep back in her own bed.

Friday, September 25, 2009

Rested and Feeling Better

We arrived in St. Louis around 12:45 and all three of us were asleep by 1:15. Molly did really well and slept through the night - hooray. She is up, and eating breakfast for the first time since Sunday. She seems SO much more like herself - phew! Hooray for the magic medicine of time.

We now have the luxury of an entire day with nothing to do and nowhere to be. We fly out first thing tomorrow morning and hopefully Molly will be that much better by then.

When I was putting her on the potty this morning I noticed that her legs are significantly different lengths now. She has two walking boots that are identical and the right leg is completely covered from the knee down with the boot and the left leg has almost an inch sticking out. He warned us that with the way the right leg broke that there would probably be a discrepancy. I am hoping that the difference is exaggerated with the boots and won't be as significant once we get her up and in shoes.

All in all we are doing leagues better and enjoying being out of the hospital and in a familiar house.

Thursday, September 24, 2009

Out of the hospital - En Route to St. Louis

We checked out of the hospital around 5 and started the 7 hour drive to St. Louis right away. Molly has done well with the transfers and I think we will all benefit from being out of the hospital and back at Jim's parents.

Thanks again for all of your messages of support. It is so nice to have emails to help distract us when we are in the thick of things.

Pictures from the hospital

Molly is definitely doing better today. She is getting everyone to buy things from "Lilly's store." That basically amounts to asking Molly if random things are for sale, and she rings them up on the cash register.

We were also very impressed with Molly's first drawing of a person with arms and legs.

Notes to myself (and others) for our next surgery

Tell the nurse as soon as we get in the room that all medications are to be scheduled and not given as needed. The past two times I have held off on the valium waiting to see spasms... don't wait to see spams! The valium was quite affective at managing her pain in between doses of other medications.

If she doesn't seem comfortable with the given narcotic/"big medicine" dose - ask if the dose can be increased and/or the frequency it is given. Dilaudid was more affective than the morphine, so we can ask for that the next time.

I think the next time I would try the epidural again, but if we find it is finicky or not affective get it pulled and start Toridol and up the other medications. I wouldn't wait more than a few hours of a finicky epidural. I have heard when they work they really work, but ours did not this time and we should have realized that sooner.

She tends to get itchy between the narcotics and the incisions, so start benedryl right off the bat.

When they first start the medications ask for them to give the frequency and also the dosage and write it down in a notebook or on the whiteboard. Stay on top of the dosing and be sure that they are given on time.

Be sure to start miralax as soon as you get in the room - that's when she will suck down 1-2 big cups of water without any coaxing.

Don't let the nurses make you feel bad for asking for more or different medicine for her. I was a bit intimidated to ask for benedryl yesterday for the itching she was having under her casts, but now feel confident it was perfectly appropriate. Remember you know her best.

Wednesday, September 23, 2009

Happy Molly is back

We are past the magic 36-48 hour window after the surgery. We saw more and more of Molly being herself today. We went for a trip around the hospital in a wagon, and had a chance to start playing different games.

Here are a couple of today's choice quotes:

"Can we come back here again? They are nice here."
"I got this kitty for being brave this week."

Tiny Steps Forward

Molly is feeling better, for the most part today. There are times when the interval between doses is a little bit too long, but more often than not she seems to be in a lot less pain than yesterday. We transferred her to a wagon today and took a trip downstairs to the gift shop. This was fun in the beginning, but soon became a bit of a nightmare. She is still very tired and became a bit hysterical when she couldn't find the right thing to buy. We came back up and she promptly fell asleep for a little under an hour.

She is watching show after show after show at the moment and interacting with us more and more like herself. We have not figured out a plan yet as to when we will be leaving, but we will probably find that out tomorrow morning when Dr. Esposito does his rounds.

She is still not eating or drinking much of anything and went 8 hours without going to the bathroom (after the catheter was taken out at 8 am). We got her on a bedpan a little while ago and now things seem to be moving in the right direction. I just hope she begins to eat and drink quite a bit more than she currently is.

All in all we are happy to have the past two nights behind us.

A Better Morning

Molly got some much needed rest last night (off and on) and seems much more like herself. She is talking quite a bit this morning and being quite pleasant (a big change from yesterday). She is still not eating or drinking much, but I'm sure that will come sometime today. If only all 3 of us could take something to sleep through the first 36 hours... at least we seem to have made it through the worst of it :)

Tuesday, September 22, 2009

Epidural Free

They have pulled the epidural after we decided that it wasn't working. They have increased her Dilaudid (a narcotic) and put in an order for Toridol (an IV motrin). The Dilaudid makes her feel a little better, but she is still in pain. I am pacing the room waiting for the Toridol to come up to the floor.

It has been a long day with lots of crying and whimpering "I hurt", which has been unbearable.

We got to lose the epidural and pulse-ox today and hopefully will lose the catheter in the morning. Then we just need to get the pain med cocktail that will work for us.

I really wish there was a better list of what to ask for when your child is in pain and how much, how often etc. It is hard that the nurses often are gun-shy to page the doctors for a change in dose or frequency. We had to push to get the epidural pulled tonight (since it wasn't working) and I only knew to push thanks to another OI mom who happens to be an ER doctor. They then thought we couldn't have toridol for hours due to the medication that might be in her system from the epidural, but again the ER doctor gave me confidence to push for it.

She just asked me "do you have brittle bones?" and when I answered "no", she said "that's good... you're lucky". That is just heartbreaking. She also said "this is a nice place" about the hospital - which is a remarkable thing given what she is going through. What an amazing little kiddo she is.

Back to the Medication Nightmare

We cannot seem to keep Molly comfortable for more than 30-40 minutes. There has been too much crying and whining for any of us to handle. She just got a bolus of medication in her epidural and we have not seen much improvement as far as pain management is concerned. We have just paged the anesthesiologist to come up with a new pain management plan...

Pain Management has Improved

Anesthesia just came in and I think we have Molly much more comfortable. They think there is some resistance in the line and not all of the medication was being administered and some has been leaking out. She came in (Dr. Marika Stone - wonderful) and did a bolus (pushed several ml's of medication through all at once) and that seems to have her much more comfortable. She is now resting peacefully. Here's hoping this lasts!

Night One Post-Op

6:30 am

It was a long night. All three of us got some sleep, but in between the sleep was rough. We have finally figured out that she needs morphine every 2 hours and valium every 4 in addition to the epidural in order to be comfortable. She screamed off and on for 10 minutes in the middle of the night while we waited for her morphine.

This morning she seems a little bit more like herself, but clearly in a lot of pain and having a lot of fear as the nurses continue to come in to do one thing or another. She has eaten several popsicles, which is a good sign.

Today is a new day and hopefully things will be better today than they were last night.

Monday, September 21, 2009

Surgery updates

We are at the Omaha children's hospital now for Molly's surgery. We'll probably be re-rodding both tibias today. I'll update the blog through the day as we have progress.

They have accessed her port, and now she is off to get x-rays. They had to bump one kid with a fracture ahead of us, so our surgery will likely be around 2pm central time today. Poor Molly hasn't had anything to eat since last night, and is getting hungry.

molly is in for surgery. She was in good spirits while we waited for everything to be ready. The surgery should take about 4 hours.

Surgery is finally underway. It took a while to get the all of the prep done.

Things are still underway, working on the first leg. Nothing out of the ordinary to report.

They have finished with the first leg, and they are moving on to the next. So far so good. We talked about having an epidural this time, which should help with the pain and recovery after the surgery is finished.

They have finished the other leg. There was less bowing it that leg, so it went more smoothly. Seems to have gone well throughout the surgery. We will probably see her in teh next 1-2 hours.

They are finished with the surgery and she is now being moved into recovery. He felt things went well. He did one incision at the mid-tibia area for an osteotomy (surgical break) and both fibulas are also broken. She may be slightly shorter on the right side due to the way the fibula is sitting, but he felt that it will balance out on its own or with subsequent surgeries and his main goal was for her to heal from this one. He noticed a lot callus (bone healing) on the front of the right tibia, which told him that she has been breaking that bone off and on for quite a while.

We should be able to see her in the next 30-45 minutes. The anesthesiologist is redoing the epidural because she wasn't getting the complete pain coverage that Molly needs (I don't want to know how they know that), but we are hopeful that they will have it figured out by the time we see her and that she will be comfortable for the next 1-2 days while it is in.

They are still trying to get her epidural set up. It will be a little longer before we will be able to see her. This waiting is unbearable.

We are in the room with Molly, and she is sleeping in bed. The Epidural seems to be helping more with pain management than previous surgeries. She asked for some water when we got into the room, and then she went back to sleep.


We're on the medication roller coaster. She was doing OK when we got up here and has since come to and been upset and in pain. She screamed and was angry (understandably so) and we are now trying new medications. We have started with morphine and will soon be adding some valium to the mix. Here's to tomorrow or the next day when I won't have to hear my daughter whimper in pain.

Tuesday, September 15, 2009

Hooray for Southwest Airlines!!

We were trying to mentally prepare ourselves for a 22 hour drive each way, but we have now been saved by a reasonable fare through Southwest! I had been looking at other airlines and the cheapest flight was between $500-$600 - these were closer to $300!!

One more thing to cross off my "to do list"... now back to trying to get our house ready to put on the market.

Monday, September 14, 2009

Surgery on Monday in Omaha

We went and got an xray of Molly's legs on Wednesday and there is definitely a fracture right at the mid-shaft of the right tibia and it also appears that the rod is migrating up into the knee. Dr. Esposito got back in touch with me today and said he didn't think this fracture would heal without replacing the rod. She has not been able to bear weight on the leg, which is unusual after 3-4 weeks with a rod in place.

Dr. Esposito's nurse called this afternoon and Molly is on the schedule for this Monday, in Omaha, at 1:00. The flights seem to be about $500 each given the last minute notice, so it seems that we are going to drive the 1200 miles!!! I know it will be an adventure if nothing else - thank goodness for DVD's :)

She has now come down with a cold and is feeling a bit under the weather, so we are offering her as much fluid as possible in hopes that this will pass or at least subside for the surgery on Monday.

She is now weighing in at 28.5 lbs

I am dreading the idea of having her going through yet another surgery, but I am hopeful that this will mean she will feel less pain in that leg and will hopefully be back to walking in a month or so.

Thursday, September 03, 2009

Fun, Feisty and Back in School

Molly is doing well and keeping us busy and entertained.

We have entered a new phase with more back-talk and tantruming than we are used to. We are now having the head turning fits in the store when she is told she cannot get the toy she has enjoyed playing with. Up until now we have been able to "visit" toys at the store and then put them back on the shelf. She is now saying "I won't let go" and she is hiding it behind her back or sitting on it etc. Oh so fun.

We were at REI yesterday and she was looking at sunglasses. When I told her she did not need another pair of sunglasses she had a nice big tantrum with "bucking" in her chair wailing and screaming and the proceeded to honk the horn (a beeping sound) on her power chair. When that didn't get her what she wanted she proceeded to "escape" and wove her way through the clothing racks all around the store. Funny now, but not at all funny at the time.

Molly had her first day of school today, which went extremely well. She has not been able to tolerate standing or walking for more than a few seconds since she broke her leg last month. We decided to start her off this year in her power chair in the classroom, which has given her a great deal of independence, which is good. She has a new aide this year, Sheila - who seems wonderful, but Molly has taken a little time to be willing to open up to her. We met Sheila last week for the first time. Molly was drawing pictures for the 3 returning teachers for this year and when I reminded her that we needed a 4th picture for Sheila she told me she would do one another day... only after explaining that we would not bring the pictures in until we had 4 she was willing to do one more (begrudgingly).

She seems to be warming up to Sheila very quickly and I am really excited for this year at school. The kids seem wonderful and Molly seems really happy to be there.

We have decided to put our house on the market and hope to be able to sell it for a good price and be able to build a new home with widened doorways and one story living for Molly that is also closer to Jim's office. Molly is very excited about the idea of being able to paint her new room purple (she does NOT understand why we painted her current room yellow - which is NOT one of her favorite colors). Boy does this girl have some strong opinions!

We have been talking a bit about what she might like to do "when she grows up" and she has now narrowed it down to being a Princess, nurse and teacher. She asked Jim what he wanted to do when he grew up and told him he should be a doctor. Jim said he wasn't sure that was something he could do, but Molly assured him he could... all you have to do is poke people and take tape off Daddy...

She is a bit unsettled about us packing things up and the idea of moving. She told me the other day that she dreamt that we had to move in to a doctor's house and they were poking and prodding her (ugh). I have of course assured her that would not happen, but she is understandably anxious. She also asked if when we got a new house would we get a new Howie too (our dog)?

Well, we live in a house FULL of stuff (mostly toys) and I have been frantically trying to pack to get us ready to be on the market and I am exhausted!! We are having a yard sale on Saturday and we are hoping to get rid of A LOT of stuff!

I am off to bed - sweet dreams :)

Monday, August 17, 2009

A Nice Visit in Maine, but Broke her Leg Yesterday

We have been in Maine since August 2nd visiting my family and enjoying the weather and fresh air. We have been busy: visiting family, playing at "Mimi and Poppy's", going to the park, visiting a petting zoo, and exploring the coast of Maine via my parents 32+ year old boat :)

Molly has had a blast. We were out yesterday on the boat enjoying a beautiful day exploring a couple of islands. We stopped at one to have lunch, but I wasn't comfortable getting stranded by the tide (in case we needed to get Molly back if she got hurt) so we headed off in search of another nice spot. The criteria for a good spot is very different than the typical so it took us a little while to find something appropriate for her and still fun. We were in the water walking to explore and she slipped and fell and I knew right away that something was cracked/broken. She calmed down relatively quickly and was happy as long as she wasn't moving and nobody was moving/carrying her. We stayed on the beach and looked for pretty rocks and shells for a good 20 minutes while she settled down and it was a good way to keep her distracted. I found a star fish and hermit-crab (my first), which were both perfect distractions. Fortunately, I had remembered her splinting material and was able to splint the leg to get her comfortable before carrying her to the boat and for the ride back to the harbor. We were very close to shore so the ride back was a non-event.

Today has been a long day, but manageable. I was able to put her in the kiddie pool without her splint on, which was a nice discovery. She didn't move much and winced when she did certain things - like trying to splash with both arms made her leg hurt). I am guessing it is a femur fracture based on what she can and can't do. We will wait another few days and see how she is doing before putting her through another x-ray.

We are heading back to NC tomorrow and feeling excited to be back home with Jim (and Howie). We have been here for over 2 weeks and have had such a good time. There is nothing like Maine in August - make the trip if you haven't :). Molly tried lobster for the first time and LOVES it. My Dad has a few lobster traps, so we were able to give it to her a couple of times for "free".

I contacted Montreal regarding Molly's Pamidronate and we are going to go back to give her the infusions every 3 months due to her increased pain and irritability in the past 3 weeks. Here's hoping it makes a difference.

We also ordered Molly her manual wheelchair today that will be size appropriate for school, and are VERY excited for her to get it. I think it will make a big difference in her independent mobility, especially when she has a broken leg.

We fly out tomorrow from Boston and will have to head down first thing in the morning to be sure we are at the airport nice and early. Signing off for the night. Thankfully Molly seems to be sleeping OK with Motrin and a splint (and a room air conditioner - lucky girl).

Thursday, July 30, 2009

An OI Gathering and Other Adventures

It has been a very long month. Molly is doing well, but keeping me very busy.

We went to Gatlinburg, TN at the beginning of the month with 9 other OI families (12 OI kids in all) and had a wonderful 4 days together. The kids had a blast and Molly really seemed to love being around other kids with Brittle Bones. She has started asking Jim and I if we have brittle bones and if Howie (our dog) does etc. I know that this process will continue for many more years as she finds her place and figures out how things work.

We drove to Gatlinburg on a Thursday and spent the first night with the Suris (5 children - 2 with OI), the Novaks (3 grown kids of their own and now have adopted 2 siblings with OI), Beth Jacks (and her daughter, Halle), the Graves (2 children - 18 month old boy with OI) and us. We cooked pizza and visited and enjoyed the BEAUTIFUL place that we rented. The cabin was named "Amazing View Lodge" and it was very fitting. We got up on Friday and packed a picnic and made our way to a paved walking path along a river. With the help/corruption of the other families we all went down to the river and the kids have fun walking on the slippery river rocks and exploring. This is something that Jim and I would never have taken Molly to do on our own, but the other families all have older children than their kids with OI and were therefore a lot more comfortable testing the limits. Molly had a ball! The water was very cold, but your legs quickly got numb to it :). There were areas that had smaller pebbles and were safer for Molly to walk around and explore on her own. Everyone had a blast and I think it was wonderful for Molly (and Jim and me) to feel like we could do what everyone else was doing.

We headed back to the cabin and met several more families that arrived for the weekend. We had a BBQ night and spent time meeting the new families.

We got up on Saturday and packed a picnic and headed off to Pigeon Forge to go tubing down a river. It was so much fun. There were some rapids along the way, but they were relatively mild - especially in an inflatable tube). The ride took over 2 hours and it was a wonderful way to visit with some of the other parents while floating down the river. Once we got to the "bottom" we got to take a small school bus back to where we started, which Molly absolutely LOVED!! She sat with two other girls that were 6 and 7 and got them to hold their arms up in the air like you would on a roller-coaster.

We went back to the cabin and had Mexican night (everyone brought something to contribute to the meals each night). That night we headed in to downtown Gatlinburg to explore. We lasted until almost 10, at which point I was exhausted from a long day and so we headed back to the cabin.

On Sunday we went to Ober Gatlinburg, a local amusement park, and had a blast with the other families. The families with babies stayed on the sidelines (which is what we did when we went 2 years ago) and we got to take Molly with the "big kids". Molly and I went down a water slide (a tunnel that you ride down in a small inflatable raft). Molly loved it, but I was terrified because there was a lot of side to side "sloshing" as we went down. She got off and had such an adrenaline rush she almost could talk to Jim as she excitedly explained what the ride was like. We also went up a chair lift and then Jim took her down an alpine slide, a cement track that you ride down on a little "sled on wheels" that you can control the speed of. We had a great time and were definitely ready for some quiet time after that. That night was italian night. We all headed out on Monday morning and headed back home.

Jim's Mom, Gram, arrived on the Thursday we got back and stayed with us until Monday. She and Molly had a blast and Molly is already excited for her next visit.

It has been a long few weeks since we returned from our trip. Molly has been complaining off and on about her legs, teeth and just starting today her right arm. She has not been one to complain in the past, so I'm not sure what is going on. My guess is that one of these things is bothering her quite a bit and then other things that aren't as bad are just too much to take with the other pain. We went to her dentist today at UNC to have her teeth checked and from what he could see things looked OK. He said that the only solution would be to pull the tooth.

Some new Molly Quotes:

"I just can't bear it, this flower is so beautiful"

Wednesday, July 01, 2009

The "Perfect" Sink

Molly has been doing really well with potty training. She is wearing underwear and is able to get on and off the potty by herself :). We have a set up that allows her to wash her own hands, which has been a huge step towards improving her independence. This has increased her desire to do more by herself and like everyone else. She is now flushing the big toilet when she has finished (even though she is going on the little potty). I was fine with this step and happy with her continued drive to be independent. I walked in this morning to check on her and she said "look, all clean" (her hands were all wet)... it only took me a second to realize what she had done... yes, she washed her hands in the toilet - ick!! We have since discussed how dirty the toilet is and to please not do that again. On a humorous side I realized that a toilet would be the perfect accessible sink for a little person (assuming it was NEVER used for anything but a sink).

One new quote:

"I didn't hear a please" (when I asked her to go wash her hands)

We are getting ready to head to Gatlinburg next week for a gathering with 7-8 other families with children with OI. We are really excited to meet/see all of these families and for Molly to have some time with other kids with OI.

Tuesday, June 23, 2009

Walking a lot Falling Some

I have got to get better at keeping up with this blog!

Molly is doing OK. She is walking quite a bit - mostly at home. We finally got a lift in the van for her Power Wheelchair, which has been a wonderful "investment". We went to the children's museum last week and she drove the chair around like she has been doing in for months! She seems to intuitively know the limits of the chair. It is wonderful for her to have the independence to go where she wants for longer distances.

She has taken some spills lately and seems to have at least one fracture in her left humerus (upper arm), but so far has been comfortable enough with just ibuprofen. Her legs are also starting to bother her more and more, but so far she is able to ignore the pain and continues her walking.

We have been working on potty training and we finally seem to be on the right path. She now walks to the bathroom herself and can get herself off and on her plastic potty (the Royal Potty - Fisher Price) and we have now set up her own sink. I will be taking and posting pictures soon. We have 2 automatic soap dispensers - one with soap and one with water - so she can wash her hands all by herself. It is amazing what a difference it makes for her confidence when she can do things for herself.

School is over for the summer. She had a great few months and we are all looking forward to her having a full year there next year.

Some of her better recent quotes:

"I can't believe my eyes" (talking about something she saw at the children's museum)

"I just realized something Daddy... you forgot to give me a piece of candy"

"I want to be a different character Daddy" (playing a game on his phone)

Monday, May 25, 2009

Proud of our Princess

Wow! Molly has been rather frustrated that she has not been able to use her walker since fracturing her collar bone a couple of weeks ago. She has been cruising along furniture and venturing a few feet here and there to get from one piece of furniture to another. I only realized today how capable she has become at walking independently. I had seen her go as much as 8 feet and wanted to capture it on video... below is a video of her walking longer and farther than we have ever witnessed!

Wait 'til you see this...

Molly Walking around our house (please ignore the mess)

We have had a very good couple of weekends. We went to our friends beach house last weekend and had a blast playing in the waves and relaxing on the beach. This weekend we went swimming at our neighborhood pool a couple of times and enjoyed getting together with some of our neighbors. Molly has loved all of the water time - maybe it even helped strengthen her for all of this new walking?!

Molly has just over 2 weeks of school left, which I think will be a difficult transition - I have got to start planning LOTS of play dates. Now that she has started school she asks most days if we are going to get to play with kids.

Way to go Molly! Here's hoping her bones will cooperate and give her a long while of walking before another fracture occurs.

Friday, May 08, 2009

Broken Clavicle

Unfortunately, Molly's clavicle broke today. She was walking in her walker alongside Sarah, and was suddenly in pain.

Sarah, Molly and Gram are on their way back from the Ortho's office now. I'll put up pictures of the xray later this weekend.

Update: Here is one of the xrays:

Also, I have some pictures from last weekend. Here is a picture of Molly with Avery and Alexi, who also both have OI.

From Molly Spring 09


Thursday, May 07, 2009

All is Well, Just busy and tired

I know it has been far too long since my last post. Molly has been keeping us busy. She has adjusted very well to school and this past week increased from 2 to 3 days per week. We have not seen a lot of peer to peer interaction yet, but I know that will come with time. She has been wonderful at engaging the adults and now we are all working on keeping her safe (which means being close by) but allowing her to observe the classroom without adult interaction (still a work in progress).

I slowly worked my way to out of the classroom and down the hall. It was very stressful in the beginning to be worrying about her the whole time we were apart, but I am finally relaxing more and more now that I feel comfortable knowing that they understand Molly's unique needs and risks. This past week I left the school grounds for the first time and ventured 2 miles away. It was wonderful to have a few hours to myself without the constant worry of where Molly was and what she was up to.

Molly and I headed up to Maine at the end of last month to attend my Uncle Tommy's memorial service (he died at 57 from what we think was congestive heart failure). Molly and I also made a trek to Montreal to go see the doctors at the Shriners hospital. She has been complaining of pain in her back and has also been mentioning that her neck "feels weird sometimes". We met with Dr. Glorieux, the doctor who first started treating OI children with the osteoperosis drug - Pamidronate - that has helped Molly so much. We had x-rays taken of her back and neck and found that she crushed one of her vertebrea when she fell about a month ago. Her back still looks straight and her neck looked fine. Whew! I was so relieved to hear that for now both her neck and back looked good.

We have been exhausted by the end of the day lately and so I will need to work on finding time to write more often about the funny things that she does and says. Her teacher, Ms. Lynn, had larangitis last week and ever since Molly has been saying "I am going to change my voice.... there I think I changed it, but I'm not sure". Today she told her new aide, Miss Teigh, that she lost her voice... they looked and Molly thought it might be in her shoe, but it was moving too fast for her to get it! I need to start carrying pen and paper with me to capture more of the funny things she says. Three is a very fun age, but extremely exhausting. She is battling with us throughout the day and by the end of the day Jim and I just want to collapse!

I will leave you with a statement an injured veteran said on Extreme Home Makeover that I thought was a good goal... "One person can make a difference and I think everyone should try."

Friday, May 01, 2009

Molly Haircut

I haven't taken any good pictures of it yet, but Molly decided to get her hair cut last week. Here is a picture taken from my phone.

Wednesday, April 15, 2009

Some pictures

We haven't put up any pictures on the blog for a while, so I thought I'd put up a few pictures.

Here is a picture of Molly getting ready for her first day of school:
From molly winter 09

Molly's first day in the classroom:
From molly winter 09

Eating chocolate from an Easter Egg:
From Molly Spring 09

Enjoying her haul of easter eggs at Livy's house:
From Molly Spring 09


Sunday, April 12, 2009

Happy Easter

Molly has had a wonderful Easter weekend. We went to Amanda's church yesterday for a puppet show and egg hunt, which Molly loved. We woke up this morning and searched her playroom for jellybeans. We headed over to her friend Livi's for an outdoor egg hunt and lunch and then went to a neighbors for dessert this afternoon. Lots of activity and fun for all.

Jim has taken tomorrow off and we will have another family filled day :).

Jim and I were watching a show this evening about a new math genius (titled Brainman) and heard a quote from another savant, Kim Peek (Rain Man), that I really liked and wanted to share:

"You don't have to be handicapped to be different - everybody's different."

Friday, April 03, 2009

Molly is Well

It has been a challenging month (at least for me), but I think today was a sign of better things to come.

School has been working well. It took a little while for me to take a breath and trust that things would fall into place, but things have settled in nicely. Molly has really enjoyed being at school. She is still predominantly interacting with the adults, but the kids are interested in her, so I think she will slowly warm up and figure out how to play with them. They completely rearranged the classroom to make it safer and more appropriate for Molly, which is more than I would have dreamed for. We are still trying to figure out how to make the "sensory table" (the table with plastic bins full of rice, water or whatever) accessible to Molly. The playground is also a bit of a challenge. She does not have any independent mobility there, so that makes things a bit more complicated to allow her opportunities to interact with the other kids (who are mostly running around in circles).

Molly's femur has healed nicely - thankfully!! She has had several falls since then and 2 of them have had pain that has lingered for days. One was last week when she fell to her bottom and started screaming and crying 'My back, I've hurt my back' and there was quite a bit of hard crying and a few longer nights (that were complicated with a chest cold). She is continuing to complain of some pain in back, but it has not been affecting her mobility. She fell on Sunday while using her walker and fell onto her face. I think she might have cracked a rib and also banged her head, but more than anything I think that fall was especially scary.

Today was a big day. Molly had her port flushed this morning, then her teacher and one of her aides came to the house to do an in-home visit. Molly got to take them on a tour of the house, which she really enjoyed. We now have a plan in place for the rest of this year and potentially for next year with school. Molly's itinerant teacher, Ms. Dawn, has been acting as Molly's aide in the classroom because there has been a hiring freeze. They now have found an agency that they can hire someone from for the rest of this year. This will allow us to potentially increase Molly's school days from 2 to 3 and then to 4. The thought is to go to 3 days once the new aide is trained and things are going smoothly. The rest of the class is there 4 days a week, so our goal is to have Molly go 4 days as well so that she is a part of the class and not just a part-time participant.

We have been making an effort to use Molly's bone stimulator everyday on her left Tibia and that seems to really be improving her mobility. She has been walking farther and farther distances, to the point that I often get her walker out of the car and she walks all the way to a store and then can walk all around! She has been getting more daring and taking more and more steps without any support. Today was her biggest/longest walking stint since that one video in her skunk costume. She took 6-10 steps unsupported and did so over a dozen times! She was so proud of herself!!

Tuesday, March 10, 2009

No School This Week

Molly was supposed to start school today, but her head teacher, and one of the two aides have had a death in the family.  We have decided to postpone Molly starting school until next week.  We were concerned that the students will be out of sorts this week with both their head teacher and one of the aides absent.

It is disappointing to have to wait since the school year will end in early June, but we also want Molly to have success and feel safe once she starts.  She doesn't seem disappointed at all and is taking it in stride :).

We are continuing to search for a wheelchair for Molly and another OI family just posted that they have a preschool size chair they would be willing to give us.  I am waiting to hear whether another family needs it more and whether the dimensions are appropriate for Molly.  We are also continuing to wait and see about getting Molly a chair through the help of Chicago Shriners, which would be ideal because it would be made specifically for her.

Molly is complaining of pain in her right Tibia and we have started using her bone stimulator again.  She is doing some standing and walking even with this pain, but we are trying to be a bit conservative.

Wednesday, March 04, 2009

Preschool starts next Tuesday

Molly was supposed to start school yesterday, but due to snow on Monday we weren't able to have a meeting with the staff to discuss the plans for Molly in case of an emergency.  

We received 2-3" of snow on Monday, which shut the whole town down.  

We had our meeting yesterday and Molly will start next Tuesday.  There is a hiring freeze at the moment, so the teacher who has been coming to our house will be acting as Molly's Aide possibly through the end of the year.  There will be 4 adults in the classroom when Molly starts.  The class is made up of 7 tuition students and 4 hearing impaired students.  There is a head teacher, Ms. Lynn, and two language facilitators that are there to help the hearing impaired children interact with the other students.  The teachers all wear headsets that they can "beam" directly into the hearing aids of the student they are working with.  Their plan is to have Molly rotate around the room and that she will not have one particular aide, but rather have the teachers tag-team responsibility throughout the day.  

I am very nervous about Molly entering the class, but I feel very good about the intentions and capabilities of the staff.  It is going to be a learning process.  I will be going with Molly and mostly hiding in a corner until we all feel that the staff is ready to keep Molly safe and know how to handle her.  I have encouraged them to tell me when it is time for me to leave the classroom - I don't know who will be ready first: me, Molly, or the staff!  I am really excited for Molly to start.  It is going to be so wonderful for her to be a part of a group.  

Molly is doing well healing, but seems to be having pain in her Tibias (lower legs).  She is standing for seconds at a time, but soon complains that her knees and/or lower legs hurt.  It has been hard having her hurt and not able to stand/walk after such a long time.  

We are now trying to find a way to get Molly a wheelchair that will work for her at school.  Our insurance will not pay for a manual chair since they bought the power chair.  I have made several phone calls and I am still waiting to hear back from a few places about either getting a demo chair at a discount or possibly going to Shriner's to get a chair made for her - which would obviously be my first choice.  The chair that she tried out at the conference that would work perfectly costs around $4300!!!  That is a lot of bake sales!  We are really hoping that Shriner's can help us find the funding to get the chair.  This would allow her to get around the classroom and reach the tables.

Friday, February 20, 2009

Preschool in less than 2 weeks!!!

Whew!  It has been a long week.  We went to observe the school on Tuesday (without Molly) and I was completely overwhelmed by the idea of being in the classroom with 11 other students 3 and 4 years old.  I observed kids being kids, which included hitting, pushing, shoving and running and falling into furniture.  For the average kid these are just part of the day, but for Molly most, if not all, of these incidents would have resulted in a fracture.  I think it is hard for any parent to drop their child off and allow someone else to be responsible for them, but for me this is almost more than I can handle.  I have been obsessive about keeping Molly as safe as possible to minimize her fractures (which I think are now over 40).  

The teacher at the school is wonderful.  Lynn, the teacher, started the preschool program after observing some hearing impaired children in the general population and noticing that they were not required to "use their words" to communicate and were held to a different standard than their peers.   She is very passionate about customizing both the classroom layout and the curriculum to each child's specific needs.  I was overwhelmed on Tuesday trying to envision how to make this work, but today went extremely well.  The teachers had spent this morning rearranging the classroom for Molly in her wheelchair.  Lynn has also planned a unit for net week to teach the student about people in wheelchairs etc.   Jim and Lori (our neighbor) came today and helped to reassure me that this was a reasonable an appropriate place for Molly.  Lori, our neighbor, did some reading up online about Lynn, the teacher, which increased my confidence in this particular classroom.  It is hard not to have another classroom to choose from, but I am starting to feel better that this is going to be a good placement for her.

Yesterday we had a "play group" with Abby, a local 2 year old little girl with OI.  They were SO cute together.  Abby was putting her hands to her mouth and calling "Moll" and then rolling to get to where Molly was.  Abby was getting up close and cuddling in with Molly.  Molly was jealous because I was paying attention to Abby, which complicated things a little bit.  Nancy, Abby's Mom, has been so trusting of me and allowed me to pick Abby up.  I picked Abby up and "sat" her on Molly's lap (still in my hands) and Abby snuggled in with Molly and rested her head on Molly's shoulder - it was ADORABLE!!!  

Today has been a good day.  We are definitely excited about the prospect of Molly going to school and being able to play with other children her age.

Thursday, February 12, 2009

Molly is Healing

There is a lot going on, but Molly is continuing to feel better by the day.  Jim woke up early yesterday morning and was unable to get a full breath.  He took a shower and then started coughing and there were streaks of blood, so we decided to err on the side of caution and headed off to the ER to get a full evaluation.  Two and a half hours later we left with no answers other than that they didn't think it was pneumonia, or a tumor, etc.  He went to the primary care today and found out it is a condition related to a recent bad cough and he was given a prescription for an inhaler.  We are all glad to have an answer and one that isn't very scary!

Molly has been crawling a few feet at a time and has not needed pain medication, which is wonderful.  She has started "tall kneeling" and when I told her I didn't think it was a good idea she said "look Mommy it's fine it doesn't hurt at all" hard to argue with that!  

We have our preschool meeting tomorrow and we are hopeful that we can all come up with a solution that will help Molly to get the peer-to-peer interaction she definitely needs.  It is wonderful and sad at the same time that she has many invisible friends that follow us around.  She has recently watched the Disney film Mulan and so as of right now Mulan is with us everywhere.  She was working with the PT today and was pretending to tie up a rope for Mulan's carriage - she has no shortage when it comes to imagination!  

Tonight as she was "falling asleep" she was singing and I had to listen closely to hear what it was she was saying - she was singing "cooperation" over and over - she is a constant source of entertainment :)

She woke up very happy today and "She was a robot" (and she uses a robot-like voice) and then we talked about what she ate as a robot.  Everything I listed she said yes to and then laughed very hard.  She loves to be teased and is definitely into finding things that are silly.  One of her favorite books at the moment is "Fluffy, by Helen Lester" which is about a porcupine named fluffy and a Rhinoceros named "Hippo" and she loves the humor in it.  She just loves games and being teased and will say "You Tease Me" or "Be Silly Again" etc.  When she isn't battling with me over every action of the day I really do enjoy her thoroughly!  

Tuesday, February 10, 2009

She's crawling!

Molly is one amazing little girl.  She broke her femur less than 3 weeks ago and she is now crawling!  Not very often or very long distances, but nonetheless she is crawling!

She had X-Rays last week and they showed that the bone is starting to heal and he gave us the OK to take the splint off.  She had her Pamidronate Infusion on Friday and Saturday.  About halfway through her first day of the infusion Molly became hyper and super happy, like we had just pumped her full of a bunch of sugar!  She started crawling soon after that.  Boy do we love that Pamidronate!  She has definitely been feeling better since getting her infusion.   She is not on any pain medication at this point and I think a lot of that has to do with her infusion.

We have our meeting with Wake County public schools on Friday to talk about her preschool and I am hopeful that they have found a good placement for her.  

She seems to have stopped napping at the moment, which has made for very long days.  I don't think she stopped talking for more than a minute all day yesterday - I am exhausted!!  Jim went to San Diego from Friday through Sunday to celebrate Nanno's 90th birthday, so I was going solo this weekend.  We really missed Jim and I was again reminded of my great respect for single parents!!  

Friday, January 30, 2009

Better But Not Great

It has been a long week.  Molly's pain is much better, which is wonderful, but there is still a lot of fear and some moments of pain.  We went on Tuesday and picked up a brace that was made for her.  It has been great for the past couple of days.  It is VERY substantial.  It is similar to the braces you see when people have had knee surgeries/injuries.  It has joints at the him, knee and ankle and then velcro straps keeping it in place.  There is a thick and hard plastic waist that goes around her middle and all along her back.  It was great for transferring in and out of the car, wheelchair, etc. but doesn't seem to be as good at night.  

She has been very feisty and demanding over the past several days.  I don't blame her for being so frustrated at her lack of mobility - she can't even go from laying down to sitting up independently.  It has been exhausting and challenging to decide when to give in to her bad, demanding behavior and when to talk about better ways to ask what she needs.  There has been a lot of crying this week - some from pain, so from fear, and some from frustration.  I am really looking forward to having this fracture healed and in the past.  

She was up during the night and very upset.  We finally got her back to sleep, but this morning I decided to take her brace off for the first time to see if it was the brace that was causing her problems or if it was her leg.  Well, the transition from the brace to splint was full of fear and crying, but once the splint from the weekend was back on she was fine.  She said she doesn't want the splint because it can get caught.  She said it got caught the one night (meaning Saturday night) - ugh.

So far the splint is working, we'll see how the day progresses.

Molly started "school" this week.  A teacher is coming twice a week to play with Molly and so far it has been wonderful.  I will keep you posted.  

Jim is working a ton and so we have not had the chance to take and/or post pictures - we'll work on it.

Sunday, January 25, 2009

Molly Update

Sad Sad Sad

Sorry to complain, but we are having a very tough time here in NC.  Poor Molly.  She was starting to feel a little bit better, so we had started taking her upstairs to sleep.  That worked out fine on Friday night, but Saturday night something didn't work out well in the transfer when I went to put her down her leg twisted and it was like it was broken all over again.  The Mclains (Amanda that is 12 with OI) came over to give us some advice about how to make a better splint and that seems to have improved things at least a little bit.

She is having so much fear that it is sometimes hard to know when she is having pain and when she is just afraid it will hurt.  She is still her happy and silly self most of the time, but when it comes time to do anything like go from sitting to laying down or change a diaper etc. there is a lot of drama and crying.

We spoke with Dr. Esposito last night and he is confident that this will heal nicely on its own and that she will be feeling a lot better in 7-10 days.  It was nice to hear that she will be feeling better soon.  We are going to look into having her fitted for an orthotic brace (the black ones you see people with after knee surgery) that would immobilize her knee and hip without having to use a SPICA, which is a cast that goes from toe to armpit on the hurt leg and and down half-way on the good leg.  I am really hoping that we can avoid a SPICA.  She would not be able to sit up and would be covered with fiberglass over most of her body.  We have been fortunate to avoid these so far because of her rods and I am hoping for that trend to continue.

Jim's Mom is flying in today and I am hopeful that having an extra set of hands will lift our spirits. 

Thursday, January 22, 2009

Bad Right Femur Fracture

Ugh.  I had been looking forward to posting about our big snow storm and now have to write about Molly's long night with a broken leg.  I was at soccer last night and Jim was getting Molly ready for bed and she fell while using her walker.  She has been complaining about knee pain off and on for the past several days, which was probably an indicator that she had a weak spot forming.  

This was our worst fracture to date.  Thank goodness she has a rod in the leg.  I got home within 20 minutes of the fracture and we made a splint, which is a very emotionally draining process.  It is hard to take off the parent hat and put on the nurse/doctor one for your own child.  As we made the splint (which helps to immobilize the bones) you end up moving the very limb she doesn't want moved and the screaming can be intense and horrible.  We had the splint on within 1-2 minutes and that did seem to provide some needed support.  The leg swelled fairly quickly and she just kept crying and saying her leg hurt, even with the splint on.  In the past once we got the splint on and kept her still that coupled with some good pain medication has been effective at allowing her to rest.  She did not sleep at all last night.  As soon as she would start to fall asleep she would jerk her body (like that feeling you sometimes get that you are falling as you start to nod off) and this would really hurt her leg and it only took a few times of this before she must have decided she would just rather not sleep.  She watched movie after movie all night long.  

Poor Jim is coming down with a nasty chest cold at the same time and so we all had a rough night.  This is the first time I have found that the medicine and splinting didn't seem to be enough.  It is hard to find ways to soothe her when she is in such significant pain.  All I want to do is pick her up and hug her, but of course the last thing she wants is to be moved at all.  I am feeling so sad for her.  This has been a very difficult year full of pain.  I am not loosing sight of the fact that she is doing far better than we ever would have imagined, but it is still so hard to see your little girl in such significant pain and you don't have any tricks left to help comfort her.  
We went to the orthopedists office today for x-rays and she did far better with the transporting to and from the car than I would have predicted.  She fell asleep in the car on the way home (after a few more of the painful jerks as she fell asleep) and is still resting there now - keep your fingers crossed that she gets some good sleep.

Dr. Esposito just happened to call last night to discuss her humerus (upper arm) x-rays from last week and gave me some good advice and reassurance that we were doing the right things.  Boy do we LOVE Dr. Esposito.  He predicted right about where the fracture ended up being.  He was hopeful that she would be comfortable within the next few days thanks to the rod, but we will have to wait and see.  Without seeing the films his thoughts were that we would wait and see if the leg healed properly on its own, which would be nice since she just has surgery last month.  We know that we only have 3-12 months left before one of these fractures will send us to surgery, but the longer we can wait the bigger the rods will be and then the longer they will last for her.

Tuesday, January 13, 2009

Happy Birthday Molly!

It is hard to believe our little princess is 3!  She had a wonderful birthday party on Sunday with her two friends: Livi (almost 4), and Audrey (3).  We decorated tin purses/lunch boxes with gems and faux flowers, had sandwiches and chocolate cake with chocolate frosting (which Molly requested and baked herself).  My parents were both in town for the big event, which made it even more special.

Today is her official birthday and she has been giddy and happy all day.  We bought a fabric "swing" from Ikea and it is now hanging in our family/tv room and was a very big hit.  She spins around and around and got so dizzy this morning she just sprawled out on the floor for a few minutes after getting out.  

We took down the crib on Sunday and she is adjusting to her new "big girl bed".  We bought a memory foam mattress and placed it on the floor with a fabric tent that goes over the whole thing.  She has been good at staying in and not exploring the room (we took almost everything out of the room for safety), but wakes up a  few times in the night and calls for us.  She called for me this morning around 5 and said she had fallen out.  I'm not sure if she just worried about falling out or actually fell out, but she was unharmed and back in bed when I got in there.  We have foam tiles and pillows all along the edge of the bed to cushion her if she did fall out, but it is still something we are all a bit worried about.  We were starting to worry that as active as she is that she might get her foot caught in between the rails of her crib and if she were to fall it would be a very nasty fracture.  She was also now tall enough that the crib rail hit her right at the nipple line, so we decided the risks of keeping her in the crib were beginning to outweigh the risks of being in a bed.  Two nights into it things are going well other than the fact that we are having to go in a couple of times during the night.

We went to Dr. Caudle's (the orthopedists) office today and took X-Rays of her right arm and things look very good.  We will be sending the films along to Dr. Esposito, and we are hopeful she will get the green light to start using her walker!!  HOORAY!  

Tuesday, January 06, 2009

Things are well at our house.  We had a nice New Year's at home with Molly.  We had a picnic on an aerobed and watched Horton Hears a Who.  It was a nice way to spend the holiday as a family.

Molly seems to be feeling better by the day and has wanted to walk more and more and often only needs to hold one of our hands.  We are tempted to bring out her walker, but will try to hold out for the verdict on her x-rays next week.

The Extreme Makeover Home Edition on ABC this Sunday (8 pm eastern) is for a little boy with severe OI.  We are really excited to see what they have done for him to get ideas and also to help people understand Molly's condition.  Hope some of you can take a look.