Eden has a cast on her leg and is feeling ok. Surgery went fine. They inserted a metal rod for more strength so she is still kind of bionic. They will take it out when we do the next lengthening - we do not yet know when that will be. We are kind of back to square one, she does not want to stand on her leg or even see it and is afraid to move. But she felt that way about the fixator and look what she was able to do at the end. The wounds will heal themselves. I am worried about itching, but what can we do about that? A few of the wounds from her hip area are not covered so we can watch those heal. Ayla will take care of them for us!
The hospital stay was fine. We checked in at 9 am, we were on the schedule for 11:30, but we did not know that. Eden started to get hungry but managed to not fuss too much. There was a younger child they operated on ahead of us. Eden isn't the baby anymore getting first dibs in the OR. I went into the OR like the past two times. I can say for sure, this was the easiest time, for me. For her it was a bit harder. Being older, she was more aware and more scared. That was not fun but we are so lucky they allow us to be with her until she is asleep.
Recovery was full so it took a bit to get her there - she did wake a few seconds before we got there so she was a bit upset when they brought us to her. The day was not great, but not terrible. I think it is more fear than pain. We managed her pain with the same meds we have given her all along, so we are keeping her doped to prevent any pain. She is also taking antibiotics for a week to ward off any infection from the rod and the open wounds. The Dr has a near perfect (just on case that happened recently) record on his kids not getting infections. That was good to hear.
They kept us in recovery for a while, Eden dozed in and out and peed on my leg (a mother's love) and Chris and I played back gammon on the ipad. Fun toy. Good news - we got a private room, but wow was it small. Eden wanted round the clock cuddles, so we gave it to her. There was a pull out chair/bed so we managed to get sleep, one on the pull out and one in her bed. The nurses were good and let her sleep for a 5 hour stretch at least. We bought them dinner, so maybe that helped.
By 10 am we were itching to get out and they gave Eden a last dose of meds, and signed our papers. We were home by 1pm! Sabba and Savta were waiting for us with TWO balloons - Dora and a Strawberry shortcake. As usual, a big hit.
So, back to the grind, kids with friends, sleepovers, Chris took them ice skating yada yada
We will see how quickly we can get Eden moving. The cast comes off in one month - so she should be free by her birthday late January! By the summer, she should have full use of her leg back. This will be almost a one year process. Good thing they did not tell us what we were in for and exactly how long! We are tired!!! But worth every second of what we have been through, and will go through, to give our little girl two perfect legs.
As always, thanks for all the support. We read all the facebook postings and emails, they keep us laughing, smiling, and hoping.
Saturday, December 18, 2010
Wednesday, December 15, 2010
The final countdown
In two days the fixator comes off. 3 months turning, 2 months strengthening the bone. The Dr was supposed to be on a relief mission in Haiti so we were scheduled for Jan 5. The trip was canceled and we found out through the grapevine so we managed to get the surgery pushed up. This is the best holiday gift possible.
Eden will get a cast for one month, then we are DONE. I am sure there is lots more PT ahead of her, but Eden loves Leslie so that is not an issue. In fact, I am pretty sure Eden will be upset when we tell her PT is done.
No words can thank you all for your continued support and prayers, we are almost at the finish line, so keep them coming.
Eden will get a cast for one month, then we are DONE. I am sure there is lots more PT ahead of her, but Eden loves Leslie so that is not an issue. In fact, I am pretty sure Eden will be upset when we tell her PT is done.
No words can thank you all for your continued support and prayers, we are almost at the finish line, so keep them coming.
Friday, November 5, 2010
Almost done
Yesterday we had an x-ray done of Eden's new bone. We are mailing it to Dr Standard and he will determine when the fixator can come off. best case is in a month. So I am doing this update to ask you all to please cross fingers, say prayers, send good thoughts, do or say what ever it is you believe in - BECAUSE WE ARE READY FOR THE FIXATOR TO BE OFF.
Thanks to you all for the encouragement, we know you are with us!
Wednesday, September 29, 2010
5.6 cm - and still going
Sorry it has been a while. I know a lot of you know things got funky last week and I was remiss in not updating Eden's progress. But the story begins that it appeared Eden's range of motion in her knee and hip was not doing well. She could not straighten her knee and her hip was getting tight. We were at numbers that the Dr said may be a sign that we have to stop turning. So on Monday we called the Dr to try and get an appt, repeatedly, we emailed, we left messages with his Asst. Then Leslie called on Tuesday and we got a call back. They told us to stop turning and come in on Th. so....Did stop turning mean we would be done, or could we start again after a few days? Did we want to be done turning even though we did not reach the target of 7 cm? Do we get excited? What do we hope for? Does it matter what we hope for, it will be what it will be. So we stopped turning and waited for Thursday.
Eden's mood seemed to improve and she even slept through the night for two days straight. Wow - did that feel good. In Balitmore we went to PT to get an evaluation. Eden looked good! Even to my eye I could see her knee was bending better and she was more relaxed and got some more movement in her hip. The therapist was cool and asked how we were feeling and was offering to sway her evaluation if we were ready to be done turning. I told her we were ambivalent, but we made it this far and lets go for it if she thinks it is safe. So she went and told the Dr we are ok to continue. So, that is what we are doing, we are still turning.We are aiming for 7 cm. Her motion is tight, but not in the danger zone. Seeing how comfortable Eden was without turning was encouraging. Even though the fixator remains on for a while after turning, it appears it will not cause her pain. It will require care, cleaning and maintenance, but at least no pain - it seems most of the pain is from the growth.
Other news - we got Eden's lift, for the right or "normal" leg. So odd she needs a lift for that leg. It is amazing, you can not even tell it is there. It is exciting that as she gets older the lift will be barely visible. Now, we need to teach her how to walk normal. She does not know heal-toe. So we are all working on it with her. She will eventually get it, just like she has overcome every thing else. Her walking is great, she barely even needs the walker at this point.
We go back to Md a week from tomorrow, Oct 7. We should be done turning soon. Wish us luck!!
Eden's mood seemed to improve and she even slept through the night for two days straight. Wow - did that feel good. In Balitmore we went to PT to get an evaluation. Eden looked good! Even to my eye I could see her knee was bending better and she was more relaxed and got some more movement in her hip. The therapist was cool and asked how we were feeling and was offering to sway her evaluation if we were ready to be done turning. I told her we were ambivalent, but we made it this far and lets go for it if she thinks it is safe. So she went and told the Dr we are ok to continue. So, that is what we are doing, we are still turning.We are aiming for 7 cm. Her motion is tight, but not in the danger zone. Seeing how comfortable Eden was without turning was encouraging. Even though the fixator remains on for a while after turning, it appears it will not cause her pain. It will require care, cleaning and maintenance, but at least no pain - it seems most of the pain is from the growth.
Other news - we got Eden's lift, for the right or "normal" leg. So odd she needs a lift for that leg. It is amazing, you can not even tell it is there. It is exciting that as she gets older the lift will be barely visible. Now, we need to teach her how to walk normal. She does not know heal-toe. So we are all working on it with her. She will eventually get it, just like she has overcome every thing else. Her walking is great, she barely even needs the walker at this point.
We go back to Md a week from tomorrow, Oct 7. We should be done turning soon. Wish us luck!!
Tuesday, September 14, 2010
2 months post op
We had a visit in Md yesterday, it was exactly 2 months post op as surgery was July 13. It was a hectic day as Ayla had a few issues at school while we were trying to get on the road. We handled what we could and then Sabba and Savta came to the rescue and picked up the peives. It was a 12:30 appt, we got there closer to 1 and saw the Dr at 3 pm. Right when Ayla, Jacob and my parents started to call to check in at the end of the school day so it was a bit hectic. Chris focused on Dr Standard and I focused on getting the twins settled via phone...so this is where we are via Chris...
Eden is now at 5.2 centimeters - the goal is 7. The left leg is now sightly longer then her right leg. This is causing a slight complication since she is bending the left knee to walk. The knee is not straigh but instead bent at a 13 degree angle. If it gets to a 15 degree, we need to stop the lengthening. Leslie (our PT) explained it is easier to get a knee to bend than to straighten, so we need to be on top of this. Dr Standard wants us to use the knee bar more often - we were doing it only at night and to help walk, this may help straighten the knee a bit. We also ordered a shoe lift for the right foot, irony. By putting a lift on the right foot it should also force her to straighten the left leg.
There is also some loosening at one of the pin sites internally. In the xray, you can see the open space around the pin in the bone. There is nothing we can do about this, but if it gets too loose he will need to operate again to replace the pin. Oh yeah. There is nothing we can do about this, so we hope it stays strong and we can avoid an additional operation.
He had us slow down to 3 turns a day instead of 4. Even though we are close to our goal, in theory only about 2 weeks away, it helps the bone harden if we slow down, so by going slower, the bone can harden quicker, thus decreasing the time the fixator will have to stay on post turning. Hope this makes sense to you....
Overall Eden is great. She is walking great with the walker and even a bit with out it. She can roll over and get around pretty well. She started day care in the mornings and is happy with her new class. The day is day care from 9 - 12 then PT. She is TIRED after that and sleeps well in the afternoons!
We go back to Md in 2 weeks and hope to be done at least with the phase of turning soon after. We will continue the updates.
That is all for now...
Eden is now at 5.2 centimeters - the goal is 7. The left leg is now sightly longer then her right leg. This is causing a slight complication since she is bending the left knee to walk. The knee is not straigh but instead bent at a 13 degree angle. If it gets to a 15 degree, we need to stop the lengthening. Leslie (our PT) explained it is easier to get a knee to bend than to straighten, so we need to be on top of this. Dr Standard wants us to use the knee bar more often - we were doing it only at night and to help walk, this may help straighten the knee a bit. We also ordered a shoe lift for the right foot, irony. By putting a lift on the right foot it should also force her to straighten the left leg.
There is also some loosening at one of the pin sites internally. In the xray, you can see the open space around the pin in the bone. There is nothing we can do about this, but if it gets too loose he will need to operate again to replace the pin. Oh yeah. There is nothing we can do about this, so we hope it stays strong and we can avoid an additional operation.
He had us slow down to 3 turns a day instead of 4. Even though we are close to our goal, in theory only about 2 weeks away, it helps the bone harden if we slow down, so by going slower, the bone can harden quicker, thus decreasing the time the fixator will have to stay on post turning. Hope this makes sense to you....
Overall Eden is great. She is walking great with the walker and even a bit with out it. She can roll over and get around pretty well. She started day care in the mornings and is happy with her new class. The day is day care from 9 - 12 then PT. She is TIRED after that and sleeps well in the afternoons!
We go back to Md in 2 weeks and hope to be done at least with the phase of turning soon after. We will continue the updates.
That is all for now...
Wednesday, September 1, 2010
Lengthening - lost count ages ago
This week was too bizarre not to write about. It started off terrible. I was in a panic because Eden's pins sites seemed to open up. I mean, there were two gaping holes in her leg. It was gross and scary and I was freaking out. How can this be normal, or is it normal? What the hell do I know??? Jacob noticed and boy was he worried. We were on the phone and texting pictures to the Dr, again the marvels of technology, and it was late. So he asked us to please wake him when we know if she is ok. The uber-protector! We had already decided to start antibiotics just in case. But the on-call Dr showed the pics to Dr Standard and they both were pretty confident that I was an excellent photographer and that there was no infection. That said, another pin site looked a bit red and Eden said it hurt, so we decided to continue with the antibiotics. The Dr told us to just do wound care, clean with saline and keep it covered with gauze. I almost vomited cleaning them. Chris came in to help. The Dr explained that movement can cause the sites to open up, again GROSS. She said if we are concerned to come to the clinic on Tues or Wed. We decided to see how Tuesday goes....Monday night was pretty bad, The Dr said it is ok to give the pain meds more frequently, This is after they upped the dosage. But the Dr said ok, so we were giving it to her almost every three hours! Tuesday was ok, not great but ok. Tuesday night sucked again but I think it was more moodiness. Looking back, we were at an amusement park on Sunday and Eden rode a carousel, one of her favorite activities lately. It was an old one and Chris commented on how rough the ride was and uncomfortable she seemed. It is very likley that jarring motion could have opened up the pin sites. That is around when Eden started showing more signs of pain and discomfort.
Now, today...Wednesday. An AMAZING day!!!!
Her mood was good, she did well at PT. Her friend Molly came over (the monsters were having a fun day at Mitzvah Camp at Beth El) so it was just me and Eden. Eden had a blast with Molly. She played, ate, found ways to get around. She did not need her blanky or pacifier at all (relief). She was just in a great mood. When Molly left Eden continued to be independent and move around the house. She used the ottoman to get around or at one point I saw her get off the couch, sit on the floor and scoot on her butt to get to her walker, then walked into the kitchen and opened the fridge then the pantry and came out with a lollipop. I was so happy I let her get away with it. : )
She then asked to go upsatirs and rest in my bed watching TV. She was being quite mobile, and had not had any pain meds for over 6 hours. At one point, I looked over and Eden was laying on her side. A first! She looked so comfy. She loved sleeping on her side so I was so happy for her.
We had decided it is time to get Eden in her own room. Ayla has been amazing, but with school starting we can not let Eden keep her up and wake her every night. We were prepared for a rough time, but at 10 pm, we finished books and songs, I kissed her good night and she did not fuss!!!! We made a special trip to Target, bought her Dora sheets, put a monitor in her room and showed her all she has to do is say I need you and we will come. Not sure what did it, but she has been nicely in her room for an hour! And what did we do? Chris and I spent our free time cleaning out closets. Schmucks!
We are pretty confident she is ready to start school a few hours a week. We are lucky Beth El day care is being so accommodating.
So, with that said, we bid you good night!!!
Now, today...Wednesday. An AMAZING day!!!!
Her mood was good, she did well at PT. Her friend Molly came over (the monsters were having a fun day at Mitzvah Camp at Beth El) so it was just me and Eden. Eden had a blast with Molly. She played, ate, found ways to get around. She did not need her blanky or pacifier at all (relief). She was just in a great mood. When Molly left Eden continued to be independent and move around the house. She used the ottoman to get around or at one point I saw her get off the couch, sit on the floor and scoot on her butt to get to her walker, then walked into the kitchen and opened the fridge then the pantry and came out with a lollipop. I was so happy I let her get away with it. : )
She then asked to go upsatirs and rest in my bed watching TV. She was being quite mobile, and had not had any pain meds for over 6 hours. At one point, I looked over and Eden was laying on her side. A first! She looked so comfy. She loved sleeping on her side so I was so happy for her.
We had decided it is time to get Eden in her own room. Ayla has been amazing, but with school starting we can not let Eden keep her up and wake her every night. We were prepared for a rough time, but at 10 pm, we finished books and songs, I kissed her good night and she did not fuss!!!! We made a special trip to Target, bought her Dora sheets, put a monitor in her room and showed her all she has to do is say I need you and we will come. Not sure what did it, but she has been nicely in her room for an hour! And what did we do? Chris and I spent our free time cleaning out closets. Schmucks!
We are pretty confident she is ready to start school a few hours a week. We are lucky Beth El day care is being so accommodating.
So, with that said, we bid you good night!!!
Monday, August 23, 2010
Lengthening - too many to count
We had PT in MD today at 11 am. It was strangely empty in the hall way when we arrived. We were used to wheel chairs and strollers and people lining the halls. There was no one today. It was our first session there in three weeks. They explained we are at the end of the season, school has started and everyone finished their procedures and are continuing care at home. I was actually disappointed not to see the crew we had gotten to know and see how they were progressing. Eden charmed our therapist Erin. Erin thought she was adorable and funny and most importantly, she was doing great. It was just me and Chris with Eden, the monsters decided to stay home with Sabba and Savta which was a good thing since our 1:30 appt with the Dr actually happened at 5:45!!
Eden was a trooper but it is amazing that doing nothing like sitting in a waiting room can be so exhausting! We did see a few people we knew while waiting, so it was nice to catch up and have friendly faces waiting with us. So here is the update. He originally said we were at 3.2 centimeters which was a bit disappointing, we thought we would be at 4 cm, more then half way to the goal of 7 cm. I could see in Chris' face he felt the same way. Right when we were about to ask, the Dr looked at a different x-ray and said wait, this is clearer, I think we have more, let me go measure. So Dr Standard went off, did his funky calculations and came back with 3.7 cm, so we are almost at 4 cm!! YEAH. Eden's mobility is fantastic and he said she is a best case scenario and wants all his colleagues that question whether a 3 yr old can tolerate this procedure to see her. I said she may tolerate it, but it sucks for the mom. He and the two assistants with him laughed, I wasn't kidding.
We asked about the pain meds that she is popping every 4 hours. They said not to worry, three year olds do not become addicted. But he said he is not surprised to hear there is more pain as we are pretty far along into the process. He told us to up the dosage to try and give her more comfort for longer periods. OK! Maybe she will sleep at night now...
And our next big question... what can we expect next? We will most likely keep turning through most of Sept. Then we will stop turning but the fixator will remain on through most of December while the bone hardens. Once that happens, they will surgically remove the fixator and implant a metal rod to help stabilize the bone. That is a one night hospital stay so they can dose her with antibiotics to ward off any possible infection. She will be in a cast for 4 weeks, full leg but she will be able to walk on it. So that takes us through Jan, right around Eden's 4th bday. I saw the disappointment creep into Chris' face again, he was looking forward to being done with this by New Years. It does not look like that will happen, but we started this thing and we will see it through to the end.
So, to sum it up, it was a long but good visit. Great to hear we are on track, but sobering thinking about the long road ahead. We go back in three weeks. If we stay on track by that time we should be at 5.8 cm, give or take. So close.... Again, one day at a time.
Eden was a trooper but it is amazing that doing nothing like sitting in a waiting room can be so exhausting! We did see a few people we knew while waiting, so it was nice to catch up and have friendly faces waiting with us. So here is the update. He originally said we were at 3.2 centimeters which was a bit disappointing, we thought we would be at 4 cm, more then half way to the goal of 7 cm. I could see in Chris' face he felt the same way. Right when we were about to ask, the Dr looked at a different x-ray and said wait, this is clearer, I think we have more, let me go measure. So Dr Standard went off, did his funky calculations and came back with 3.7 cm, so we are almost at 4 cm!! YEAH. Eden's mobility is fantastic and he said she is a best case scenario and wants all his colleagues that question whether a 3 yr old can tolerate this procedure to see her. I said she may tolerate it, but it sucks for the mom. He and the two assistants with him laughed, I wasn't kidding.
We asked about the pain meds that she is popping every 4 hours. They said not to worry, three year olds do not become addicted. But he said he is not surprised to hear there is more pain as we are pretty far along into the process. He told us to up the dosage to try and give her more comfort for longer periods. OK! Maybe she will sleep at night now...
And our next big question... what can we expect next? We will most likely keep turning through most of Sept. Then we will stop turning but the fixator will remain on through most of December while the bone hardens. Once that happens, they will surgically remove the fixator and implant a metal rod to help stabilize the bone. That is a one night hospital stay so they can dose her with antibiotics to ward off any possible infection. She will be in a cast for 4 weeks, full leg but she will be able to walk on it. So that takes us through Jan, right around Eden's 4th bday. I saw the disappointment creep into Chris' face again, he was looking forward to being done with this by New Years. It does not look like that will happen, but we started this thing and we will see it through to the end.
So, to sum it up, it was a long but good visit. Great to hear we are on track, but sobering thinking about the long road ahead. We go back in three weeks. If we stay on track by that time we should be at 5.8 cm, give or take. So close.... Again, one day at a time.
Sunday, August 15, 2010
Lengthening - Day 25
Really not much different this week. Lots of pool time, lots of PT. The kids continue to amaze me and step up to help me and Eden. Ayla and Jacob did exercises with Eden on the pool twice this week. They made up games to encourage her to move around, absolutely precious. We all played ring around the roses in the pool, fun for everyone.
PT is starting to get a little tougher, more ouches, and Eden is fighting it here and there. We started antibiotics again because Eden seemed sore and indicated one of the pin sites really hurt. The pin sites look nasty no mater what, so itis so hard to tell. It appears it helped a bit. The biggest challenge of the week was Ayla getting swimmmers ear and she was miserable. We had a middle of the night trip to the pharmacy, luckily a friend called in a pain medication and oral antibiotic for her. So Ayla and Eden are on meds together. I practically need to start charts to track it all. Only a few more days of the meds, and they are both feeling better. PT still seems to hurt more, but we were warned about that.
This coming week we will have our PT in NJ all week again. We go to MD next Monday, we are hoping for a good report. We will also see the physical therapist there to be sure they are happy with Eden's progress. Will post more then.
One thing to share---Adina has stopped sucking her thumb. It took her a day and the promise of a cell phone. It did the trick!! We are quite impressed her will power was so strong that it took one day. The power of technology is strong!
PT is starting to get a little tougher, more ouches, and Eden is fighting it here and there. We started antibiotics again because Eden seemed sore and indicated one of the pin sites really hurt. The pin sites look nasty no mater what, so itis so hard to tell. It appears it helped a bit. The biggest challenge of the week was Ayla getting swimmmers ear and she was miserable. We had a middle of the night trip to the pharmacy, luckily a friend called in a pain medication and oral antibiotic for her. So Ayla and Eden are on meds together. I practically need to start charts to track it all. Only a few more days of the meds, and they are both feeling better. PT still seems to hurt more, but we were warned about that.
This coming week we will have our PT in NJ all week again. We go to MD next Monday, we are hoping for a good report. We will also see the physical therapist there to be sure they are happy with Eden's progress. Will post more then.
One thing to share---Adina has stopped sucking her thumb. It took her a day and the promise of a cell phone. It did the trick!! We are quite impressed her will power was so strong that it took one day. The power of technology is strong!
Sunday, August 8, 2010
turning the fixator
this is a video of Eden turning the fixator by herself. It is pretty cool. She does it all on her own, if only it was not painful for her. The turning itself does not hurt, it is the results of the turning - the stretching of the muscles, etc that results in the pain.
Thursday, August 5, 2010
Lengthening - Day 18
It is 12:30 am, and we are finally home and everyone else is asleep. We got home just before midnight. It was quite a day...
We started off with an early rise from Eden, 8 am, considering she falls asleep around 12 am and usually wakes during the night in pain, that is early. But she woke in a good mood, we watched My Little Pony (again, please help me!!!) and went down stairs to find a gift had arrived from the Kabers, of guess what, Little Ponies!! Wow, was Eden happy - see picture!!
We had PT of course at noon. Leslie is a pleasure. I enjoy chatting with her and she is great with Eden. For some one who has never worked with this procedure, she sure knows what she is doing. Shout out to Barb Wilen for recommending her. Therapy went well and then we were off to the races. Chris went into work but left at lunch, thanks to this blog his co-worker (hi Vasantha!!!) knew we were heading to MD today, and he made it out of the office on time. He beat me home by minutes. The kids were ready, and we climbed into the van to head down to Md. They really are confused though, they asked several times how long we are staying there, even though we told them repeatedly we are going home the same day.
The appt with Dr Standard was 3:30, I think we got there closer to 4 pm, but that is ok per the front desk. We were warned of the wait, so we were prepared. I had the kids bring books, i-pods, i-touches, snacks, activities, you name it...we managed to pass the time. We saw several families we had met while staying there for three weeks, it is good to have friendly faces now. We were warned it was about two hours. There are computers in the waiting room for kids to play on, so Jacob was occupied the entire time. The girls and I did crafts and it passed pretty easily. We saw the Dr around 5:30, it would have been sooner but he spent a good amount of time with the patient before us. That makes me glad to know he gives each family the time they need. He was happy with her pin sites and said we are doing an excellent job cleaning and caring for them. Ayla was in the exam room so we told him and his assistant it was Ayla's handy work and they were impressed. We are able to stop the antibiotics so Eden will only be on the pain medication now. She has gotten ok with taking it. She knows it helps the pain go away, and will take it, but it takes 30 min to kick in, but I am ok with letting her be the judge of when she needs it. For now, I do still make her take some before PT though.
The update you all really want...There was more growth and the new bone looks good. She is at 2 cm now, again we are aiming for 7 cm. We discussed the pain and he basically said we can make the call to turn 3 or 4 times a day. 4 turns gives us a full mm/day. It may be nerve pain, or it may be regular pain from the process since it is only at night. He trusts us to determine what is best for Eden and us. Dr Standard very much talks about the whole family in this process. He said if she is in less pain and can sleep better doing three turns, which allows us to sleep, he is all for it. It may set us back a few days in the long run, but then again if she is in less pain she may be able to get to 7 cm more easily and comfortably. If she starts to be in too much pain, we have to stop no matter how much length we have gained, or are hoping to gain. So, I get to play Dr...this should be fun.
We were out of the hospital just around 6. Chris picked up a new Rx for the pain meds, we want to be sure we have it hand and we are not scheduled for another visit until Aug 23. Then we headed to this amazing mall, Arundel Mall. Boy does it make me want to shop! We started at Dave and Busters for dinner, the kids had a blast! Even Eden got in on the fun. But I will say this, skeeball is not her game. Whack the mole was more her speed. We spent a good amount of time there. We had a coupon book and there was a buy one croc get one free, so we got new crocs for all the kids, we also went back to the lego store and Jacob and Adina picked up something (thank you Sabba and Savta for giving the kids spending money) and the best art, drum roll please...they had a pillow pet stand. The kids have been begging!!! So the girls used their money from their grandparents and were all so excited to get pillow pets. I must tell you, the things are very soft!!! We were just about the last ones in the mall when it closed at 9:30. Then into the car for the trek home, in the parking lot the kids told us they had a great night. I am happy we can make this chaos fun for them. We had a movie from netflix, so I sat in the back with them - they always enjoy that (the movie was Princess & the Frog) and watched it on the ride home, it was a cute movie.
But, by the end of the ride little Eden really was uncomfortable and was crying. I held her foot for her, and managed to give her some pain meds but she was pretty unhappy. 11 pm is her witching hour - again, just like a new born, she has her fussy time. When we were about 15 min from home I could not stand it anymore so I took her out of her seat and held her. This helped comfort her and she passed out in my arms. The kids hate to see her like this, well, we all hate when she feels the pain. Each time I have to go over with them why she is in pain and why we are doing this. They care about her so much. I can say for sure my family has learned two important lessons from all of this:
G'nite!!
We started off with an early rise from Eden, 8 am, considering she falls asleep around 12 am and usually wakes during the night in pain, that is early. But she woke in a good mood, we watched My Little Pony (again, please help me!!!) and went down stairs to find a gift had arrived from the Kabers, of guess what, Little Ponies!! Wow, was Eden happy - see picture!!
We had PT of course at noon. Leslie is a pleasure. I enjoy chatting with her and she is great with Eden. For some one who has never worked with this procedure, she sure knows what she is doing. Shout out to Barb Wilen for recommending her. Therapy went well and then we were off to the races. Chris went into work but left at lunch, thanks to this blog his co-worker (hi Vasantha!!!) knew we were heading to MD today, and he made it out of the office on time. He beat me home by minutes. The kids were ready, and we climbed into the van to head down to Md. They really are confused though, they asked several times how long we are staying there, even though we told them repeatedly we are going home the same day.
The appt with Dr Standard was 3:30, I think we got there closer to 4 pm, but that is ok per the front desk. We were warned of the wait, so we were prepared. I had the kids bring books, i-pods, i-touches, snacks, activities, you name it...we managed to pass the time. We saw several families we had met while staying there for three weeks, it is good to have friendly faces now. We were warned it was about two hours. There are computers in the waiting room for kids to play on, so Jacob was occupied the entire time. The girls and I did crafts and it passed pretty easily. We saw the Dr around 5:30, it would have been sooner but he spent a good amount of time with the patient before us. That makes me glad to know he gives each family the time they need. He was happy with her pin sites and said we are doing an excellent job cleaning and caring for them. Ayla was in the exam room so we told him and his assistant it was Ayla's handy work and they were impressed. We are able to stop the antibiotics so Eden will only be on the pain medication now. She has gotten ok with taking it. She knows it helps the pain go away, and will take it, but it takes 30 min to kick in, but I am ok with letting her be the judge of when she needs it. For now, I do still make her take some before PT though.
The update you all really want...There was more growth and the new bone looks good. She is at 2 cm now, again we are aiming for 7 cm. We discussed the pain and he basically said we can make the call to turn 3 or 4 times a day. 4 turns gives us a full mm/day. It may be nerve pain, or it may be regular pain from the process since it is only at night. He trusts us to determine what is best for Eden and us. Dr Standard very much talks about the whole family in this process. He said if she is in less pain and can sleep better doing three turns, which allows us to sleep, he is all for it. It may set us back a few days in the long run, but then again if she is in less pain she may be able to get to 7 cm more easily and comfortably. If she starts to be in too much pain, we have to stop no matter how much length we have gained, or are hoping to gain. So, I get to play Dr...this should be fun.
We were out of the hospital just around 6. Chris picked up a new Rx for the pain meds, we want to be sure we have it hand and we are not scheduled for another visit until Aug 23. Then we headed to this amazing mall, Arundel Mall. Boy does it make me want to shop! We started at Dave and Busters for dinner, the kids had a blast! Even Eden got in on the fun. But I will say this, skeeball is not her game. Whack the mole was more her speed. We spent a good amount of time there. We had a coupon book and there was a buy one croc get one free, so we got new crocs for all the kids, we also went back to the lego store and Jacob and Adina picked up something (thank you Sabba and Savta for giving the kids spending money) and the best art, drum roll please...they had a pillow pet stand. The kids have been begging!!! So the girls used their money from their grandparents and were all so excited to get pillow pets. I must tell you, the things are very soft!!! We were just about the last ones in the mall when it closed at 9:30. Then into the car for the trek home, in the parking lot the kids told us they had a great night. I am happy we can make this chaos fun for them. We had a movie from netflix, so I sat in the back with them - they always enjoy that (the movie was Princess & the Frog) and watched it on the ride home, it was a cute movie.
But, by the end of the ride little Eden really was uncomfortable and was crying. I held her foot for her, and managed to give her some pain meds but she was pretty unhappy. 11 pm is her witching hour - again, just like a new born, she has her fussy time. When we were about 15 min from home I could not stand it anymore so I took her out of her seat and held her. This helped comfort her and she passed out in my arms. The kids hate to see her like this, well, we all hate when she feels the pain. Each time I have to go over with them why she is in pain and why we are doing this. They care about her so much. I can say for sure my family has learned two important lessons from all of this:
- Even though this may be no picnic, many children and families have it far worse then we do
- Family first, we are all in this together, taking care of each other and supporting each other. I know this is some thing that will bond them all for life.
G'nite!!
Tuesday, August 3, 2010
Lengthening - Day 16
Monday was Chris' last day home so we went to breakfast then he dropped me and Eden off at PT. When he came to get us (he wanted to check it out) we were done and Eden said," I did such a good job Daddy!" It was damn cute. She then proceeded to walk all the way to the car with the walker, this is the longest she has walked yet. When we got home she was over it and would not walk any more. Oh well, like I keep saying, a bit more every day.
In general, PT is going well. Rainbow Rehab is taking very good care of Eden. They have a great set up and the exercises seem just right. Leslie and I have a lot in common, she also has 11 year old twins and her daughter plays soccer. So the time passes quickly for all of us. Eden watches TV, Leslie and I chat and Eden lets Leslie do what she needs. We have been swimming every day at the JCC to help with pool therapy. Eden moves well in the water - she walks all around and even does the stairs - and of course the entire family enjoys the swim time. We have all been doing laps together. Ayla kicks all of our butts.
Chris went back to work today and I am happy to report I did not kill any of our children. I took Eden to PT, then we all went to buy Ayla her soccer gear (can't believe she starts tomorrow!) then we all went to lunch at Friendly's. Eden was between me and Jacob and kept steeling his food. It was pretty funny. They all joked around a lot, they got a bit loud but hey, it is Friendly's! It was just great seeing them have fun together. We came home for some quiet time and I managed to get Eden to nap around 4pm. She is not sleeping normal at all. Late naps and wakeful nights. If we try and go without a nap she crashes early eve. Still always an adventure with her sleeping patterns. Before any of this started (her first surgery was a year and a half ago) she was an amazing sleeper. 8 pm to 8 am, no interruptions, to bed nice and easy. We have not been able to get back to that, we will see where we end up after this is all over in a few months. Back to today...Chris made it home for dinner so we waited for him to go for a family swim and he helped do the PT in the pool while I played with the kids, then we all goofed around for a bit. Tomorrow he has a late meeting so we will see where the day takes us. Again, I am fairly confident when Chris gets home he will still have 4 kids intact.
The Dr's office called this am and said they have to reschedule her next appointment because Dr Standard will be away on vacation the week they scheduled us. Oops. They wanted to move us to the following Th which would be three weeks with no appt. I said ah, no. We only had one post op visit and are still figuring this all out. We are not comfortable going so long with no visit. The scheduler said the Dr looked over the schedule and said it is fine to move all the patients. My reply, the Dr may be comfortable with it, but I am not. She promptly told me she would have the Dr's asst call me. Around 4 pm they finally called and the asst gave me the same shpeil, and I gave her the same reply, Those of you who know me well know my attitude, and they were not getting away with this. I found it totally unacceptable to think we could go almost a month with no visit when they were the ones who told us it is critical to come every 2 weeks. Maybe if we were a bit further into the process we would look at this as a relief that we do not need to make the trip, but right now we are winging it and the only beacon of light are these visits telling us we are heading in the right direction. I was put on hold not once but twice, and eventually they said we should come in this week so there will be no long gaps in visits. I would much rather go to early then too late, so I agreed. That said, MD here we come...we will be there all of Thursday. We are warned the Dr is booked solid because he is cramming in patients before he leaves for vacation. So it should be a long waiting time, and the kids will be with me. Chris is a maybe, he has to see what the work day brings. We had a PT session booked for Fri in MD to verify things are on the right track here. Clearly I am not going down Th and Fri. I am trying to change the appt to Th, but if I can not I will just go the following week. I am pretty confident we are doing well here, so giving it two weeks may actually be better anyway, more time to make sure we are staying on the right path.
Eden stays in good spirits. She is trying to do her own PT which is hysterical. Turning the fixator is totally her job, she does not like when we do it. She is starting to cooperate with wearing the foot plate and keeping her foot elevated and the knee brace on at night, she gets it is all to help her be more comfortable. But I really do not get how being immobilized with a sweaty plastic thing on her foot sitting on a foam egg crate can be comfy. No wonder she wakes up!! But these little cries she makes - usually at night, it is so cute we almost laugh. It sounds more like a tiny animal than a little girl. Better to laugh then cry...She is trying to hang tough. She is still scared so we talk a lot about trust and we are here to help her and won't let anything happen to her, like falling and getting hurt. She just needs to try and walk and put weight on her leg. It will make this easier for all of us.
So to sum it up, if you are looking for us, there is a good chance you can find us at the JCC pool!! Will write again Th after the visit, or more realistically Fri after I recuperate from the long day we will have.
Thx for reading! As Eden says, PEACE
In general, PT is going well. Rainbow Rehab is taking very good care of Eden. They have a great set up and the exercises seem just right. Leslie and I have a lot in common, she also has 11 year old twins and her daughter plays soccer. So the time passes quickly for all of us. Eden watches TV, Leslie and I chat and Eden lets Leslie do what she needs. We have been swimming every day at the JCC to help with pool therapy. Eden moves well in the water - she walks all around and even does the stairs - and of course the entire family enjoys the swim time. We have all been doing laps together. Ayla kicks all of our butts.
Chris went back to work today and I am happy to report I did not kill any of our children. I took Eden to PT, then we all went to buy Ayla her soccer gear (can't believe she starts tomorrow!) then we all went to lunch at Friendly's. Eden was between me and Jacob and kept steeling his food. It was pretty funny. They all joked around a lot, they got a bit loud but hey, it is Friendly's! It was just great seeing them have fun together. We came home for some quiet time and I managed to get Eden to nap around 4pm. She is not sleeping normal at all. Late naps and wakeful nights. If we try and go without a nap she crashes early eve. Still always an adventure with her sleeping patterns. Before any of this started (her first surgery was a year and a half ago) she was an amazing sleeper. 8 pm to 8 am, no interruptions, to bed nice and easy. We have not been able to get back to that, we will see where we end up after this is all over in a few months. Back to today...Chris made it home for dinner so we waited for him to go for a family swim and he helped do the PT in the pool while I played with the kids, then we all goofed around for a bit. Tomorrow he has a late meeting so we will see where the day takes us. Again, I am fairly confident when Chris gets home he will still have 4 kids intact.
The Dr's office called this am and said they have to reschedule her next appointment because Dr Standard will be away on vacation the week they scheduled us. Oops. They wanted to move us to the following Th which would be three weeks with no appt. I said ah, no. We only had one post op visit and are still figuring this all out. We are not comfortable going so long with no visit. The scheduler said the Dr looked over the schedule and said it is fine to move all the patients. My reply, the Dr may be comfortable with it, but I am not. She promptly told me she would have the Dr's asst call me. Around 4 pm they finally called and the asst gave me the same shpeil, and I gave her the same reply, Those of you who know me well know my attitude, and they were not getting away with this. I found it totally unacceptable to think we could go almost a month with no visit when they were the ones who told us it is critical to come every 2 weeks. Maybe if we were a bit further into the process we would look at this as a relief that we do not need to make the trip, but right now we are winging it and the only beacon of light are these visits telling us we are heading in the right direction. I was put on hold not once but twice, and eventually they said we should come in this week so there will be no long gaps in visits. I would much rather go to early then too late, so I agreed. That said, MD here we come...we will be there all of Thursday. We are warned the Dr is booked solid because he is cramming in patients before he leaves for vacation. So it should be a long waiting time, and the kids will be with me. Chris is a maybe, he has to see what the work day brings. We had a PT session booked for Fri in MD to verify things are on the right track here. Clearly I am not going down Th and Fri. I am trying to change the appt to Th, but if I can not I will just go the following week. I am pretty confident we are doing well here, so giving it two weeks may actually be better anyway, more time to make sure we are staying on the right path.
Eden stays in good spirits. She is trying to do her own PT which is hysterical. Turning the fixator is totally her job, she does not like when we do it. She is starting to cooperate with wearing the foot plate and keeping her foot elevated and the knee brace on at night, she gets it is all to help her be more comfortable. But I really do not get how being immobilized with a sweaty plastic thing on her foot sitting on a foam egg crate can be comfy. No wonder she wakes up!! But these little cries she makes - usually at night, it is so cute we almost laugh. It sounds more like a tiny animal than a little girl. Better to laugh then cry...She is trying to hang tough. She is still scared so we talk a lot about trust and we are here to help her and won't let anything happen to her, like falling and getting hurt. She just needs to try and walk and put weight on her leg. It will make this easier for all of us.
So to sum it up, if you are looking for us, there is a good chance you can find us at the JCC pool!! Will write again Th after the visit, or more realistically Fri after I recuperate from the long day we will have.
Thx for reading! As Eden says, PEACE
Sunday, August 1, 2010
Lengthening - Day 14
We are home, hopefully for good. We start PT here in NJ tomorrow. We will do it all week thru Th, then on Fri go to MD for a session. If all looks good we will stick with PT here. If the therapist is not able to do the PT properly, then I may need to go back with Eden. Fingers crossed.
Chris returns to work On Tuesday, right back to the grind. In NY on Tues then an offsite Wed and Th that will keep him late. He will come with us all on Fri to MD to see how things are going. It shoul dbe interesting entertainimng the 4 kids and making sure Eden is comforatbale. For th emost part she is easy during the day. Pool therapy is great for her. We went both days this weekend and she walks in the water, does stairs, kicks, all great things for her leg. The kids love the water so the pool will be a daily destination for us. We are lucky to have the JCC so close by.
It is only three weeks, and we will find ways to pass the time together. It will be sad to not have Chris with us, but some one has to make money!! I get to have fun with the kids spending it.
Eden is still not walking much, a few steps here and there and standing for some time, but she says she is scared. We hope she will get more comfortable and confident and just take off one day soon. She had a nice dinner with us tonight, that was new. She sat the entire meal and was a pleasure.
Nights are still an adventure, Eden struggles to fall asleep and does not sleep thru the night. We used to be pretty tough about bedtime routines but I am finding it hard right now. I mean, the girls has a metal apparatus attached to her leg, I have to feel some pity for her. But eventually we will have to create a routine and get her back to it. She is playing musical beds and waking up and watching TV in the middle of the night to soothe the pain., Not great habits, I know. But we feel for her so will give her a few more weeks. But school starts in 2 month, and the routine will have to return for all of us.
I am thankful to not have to worry about work right now, she really does need all my attention and what ever is left I want to try and make a normal life for the other kids. Ayla starts soccer on Wed, back to school shopping and preparations, etc...life goes on for all of us. We want to do our best to make this process part of our lives, not all consuming.
Each day continues to get easier, one day at a time is our favorite expression. Eden made it all day with out pain meds, that includes doing the exercises in the pool. She just took some now as she is trying to settle to sleep. We will give her int he am before PT though. She also has not complained much about her foot, so I guess slowing done a few days and using the foot plate has made a difference. We plan to start 4 turns again tomorrow. I must admit, it is pretty cool watching her turn it herself. I may take a video and post it for everyone to see. It is 10 pm, kids are settled, Ayla has a friend sleeping here, lets hope for a quiet night.
More after PT tomorrow....
Chris returns to work On Tuesday, right back to the grind. In NY on Tues then an offsite Wed and Th that will keep him late. He will come with us all on Fri to MD to see how things are going. It shoul dbe interesting entertainimng the 4 kids and making sure Eden is comforatbale. For th emost part she is easy during the day. Pool therapy is great for her. We went both days this weekend and she walks in the water, does stairs, kicks, all great things for her leg. The kids love the water so the pool will be a daily destination for us. We are lucky to have the JCC so close by.
It is only three weeks, and we will find ways to pass the time together. It will be sad to not have Chris with us, but some one has to make money!! I get to have fun with the kids spending it.
Eden is still not walking much, a few steps here and there and standing for some time, but she says she is scared. We hope she will get more comfortable and confident and just take off one day soon. She had a nice dinner with us tonight, that was new. She sat the entire meal and was a pleasure.
Nights are still an adventure, Eden struggles to fall asleep and does not sleep thru the night. We used to be pretty tough about bedtime routines but I am finding it hard right now. I mean, the girls has a metal apparatus attached to her leg, I have to feel some pity for her. But eventually we will have to create a routine and get her back to it. She is playing musical beds and waking up and watching TV in the middle of the night to soothe the pain., Not great habits, I know. But we feel for her so will give her a few more weeks. But school starts in 2 month, and the routine will have to return for all of us.
I am thankful to not have to worry about work right now, she really does need all my attention and what ever is left I want to try and make a normal life for the other kids. Ayla starts soccer on Wed, back to school shopping and preparations, etc...life goes on for all of us. We want to do our best to make this process part of our lives, not all consuming.
Each day continues to get easier, one day at a time is our favorite expression. Eden made it all day with out pain meds, that includes doing the exercises in the pool. She just took some now as she is trying to settle to sleep. We will give her int he am before PT though. She also has not complained much about her foot, so I guess slowing done a few days and using the foot plate has made a difference. We plan to start 4 turns again tomorrow. I must admit, it is pretty cool watching her turn it herself. I may take a video and post it for everyone to see. It is 10 pm, kids are settled, Ayla has a friend sleeping here, lets hope for a quiet night.
More after PT tomorrow....
Thursday, July 29, 2010
Lengthening - Day 12
We had our first follow up with Dr Standard today. He was very happy - already 1.4 cm gained. We are aiming for 7 cm total. From what I have been hearing from others, that is very aggressive. Eden has been experiencing pain in her foot, an indication of nerve issues. As expected, he said we should slow down a bit. So instead of 4 turns a day, we will do 3 turns on odd days and 4 turns on even days. Tracking the turns should be interesting!!! We have a color code system now they did in the hospital, 3 greens and a red. We turn to green three times, and when we get to red we are done for the day. With 3 one day 4 another this does not work. We will figure out a new color code when we get home. I am sure we will mess it up at some point. Eden now does the turns herself, it is pretty cool. The part that freaked me the most seems to be the easiest in the end. It is everything else that is difficult. Walking, standing, cleaning, dressing, sleeping, bathing, need I go on?
Eden is doing fine off the pain meds during the day, but at night she is in pain. So we do not sleep much. Exhaustion is setting in for us, Eden is ok though, well - she is cranky here and there, but who can blame her? The Dr suggested using the valium to help her relax and ease the foot pain at night. With all the meds and vitamins, she is not cooperating much. I hate forcing her to take meds, but we may get to that point soon so she can sleep (ok, so we can all sleep).
We met another little boy from So Jersey here for the same lengthening procedure. They just got here and we are leaving, but we will try and stay in touch. We were cleared to do PT at home, we are using the same practice that did PT last year after Eden's hip surgery - Rainbow Rehab. I will continue to come down once a week to Md for PT though just to be sure we are on track. They really are impressive here, but they are giving us terrible PT times. With Eden not sleeping at night getting her up for a 9 am PT appt is not easy. We have asked daily and they will not move it. Although we value the expertise we will try at home. We have to come every two weeks for check ups anyway, so it is just two more trips a month. Wish there was frequent driver miles!! Thankfully I took time away from work so I can do this for Eden. I plan to do the pool therapy with her daily, she loves it and it is something we can all do together. PT will continue to be daily, so we will stay busy.
We are still one day at a time. I hope the therapy goes well at home. It is actually my most relaxing part of the day right now knowing she is in good, skilled hands. It is all the therapists here do - they specialize in pediatric limb lengthening. They made a video for us to take home, so keeping fingers crossed that it continues to go well. If it does not go well, I will have to come back to Md with her, it is too big a risk not to do this right. But we will cross that bridge IF we must.
Eden is still not walking much. At most she goes across a room. I hope she gets her confidence soon. Even just standing would make caring for her much easier. I hope comforts of home may help with this. We also have to keep an eye on her heal, she is getting a bit of a sore from her foot laying still in bed. We caught it early, so we need to prop it, but she should be fine.
There is so much to do - this is more complicated then we ever thought. But luckily Eden's good mood during most of the day keeps us going. I hope one day she will be able to tell us we did the right thing by making her go through all of this. We see all the other kids here at RMH and know we are lucky, but at the same time makes me question if this was even necessary. So, still one day at a time. If I think of two more months, I am overwhelmed.
Chris' strength is a blessing, There is nothing he can not do and nothing he is afraid of, he is a rock. Eden is lucky to have him as her father, there is nothing he will not do for her.
So, will write more from NJ!!! Again, thanks to everyone for the support.
Eden is doing fine off the pain meds during the day, but at night she is in pain. So we do not sleep much. Exhaustion is setting in for us, Eden is ok though, well - she is cranky here and there, but who can blame her? The Dr suggested using the valium to help her relax and ease the foot pain at night. With all the meds and vitamins, she is not cooperating much. I hate forcing her to take meds, but we may get to that point soon so she can sleep (ok, so we can all sleep).
We met another little boy from So Jersey here for the same lengthening procedure. They just got here and we are leaving, but we will try and stay in touch. We were cleared to do PT at home, we are using the same practice that did PT last year after Eden's hip surgery - Rainbow Rehab. I will continue to come down once a week to Md for PT though just to be sure we are on track. They really are impressive here, but they are giving us terrible PT times. With Eden not sleeping at night getting her up for a 9 am PT appt is not easy. We have asked daily and they will not move it. Although we value the expertise we will try at home. We have to come every two weeks for check ups anyway, so it is just two more trips a month. Wish there was frequent driver miles!! Thankfully I took time away from work so I can do this for Eden. I plan to do the pool therapy with her daily, she loves it and it is something we can all do together. PT will continue to be daily, so we will stay busy.
We are still one day at a time. I hope the therapy goes well at home. It is actually my most relaxing part of the day right now knowing she is in good, skilled hands. It is all the therapists here do - they specialize in pediatric limb lengthening. They made a video for us to take home, so keeping fingers crossed that it continues to go well. If it does not go well, I will have to come back to Md with her, it is too big a risk not to do this right. But we will cross that bridge IF we must.
Eden is still not walking much. At most she goes across a room. I hope she gets her confidence soon. Even just standing would make caring for her much easier. I hope comforts of home may help with this. We also have to keep an eye on her heal, she is getting a bit of a sore from her foot laying still in bed. We caught it early, so we need to prop it, but she should be fine.
There is so much to do - this is more complicated then we ever thought. But luckily Eden's good mood during most of the day keeps us going. I hope one day she will be able to tell us we did the right thing by making her go through all of this. We see all the other kids here at RMH and know we are lucky, but at the same time makes me question if this was even necessary. So, still one day at a time. If I think of two more months, I am overwhelmed.
Chris' strength is a blessing, There is nothing he can not do and nothing he is afraid of, he is a rock. Eden is lucky to have him as her father, there is nothing he will not do for her.
So, will write more from NJ!!! Again, thanks to everyone for the support.
Monday, July 26, 2010
Lengthening - Day 9
We were home for the weekend so I wanted to focus on the family. We all enjoyed being home. PT was very successful last week. They got Eden walking short distances but there was a bit of progress each day. We all had a good time at the RMH. We got tickets to the Science Museum and it was amazing. We hope to go back next week. It is right on the harbor so we walked around and toured two of the ships. We had an impromptu lunch at Fogo De Ciao and the kids LOVED it. Eden cooperated and slept thru the entire meal. It was fun to see how the kids reacted to good service at a quality restaurant. We will go back our last week here as a treat for us all. Maybe Eden will even stay awake next time.
Eden enjoyed being home. She spiked a fever which sent us into a tailspin. Infection? Swimmers ear? Regular bug that kids get? We called the on call Dr and he had us text a picture of the pin sites that we were concerned about. He said it looks red but nothing unusual. gee, thx. But wow, technolgy can be cool. A friend came by and looked at her ears and they were clear....but by Sat the fever broke so we relaxed. Eden walked a bit at home with the walker. Everyone got really excited. By Sat night she even asked for the walker to get to the door, where her chariot (AKA Daddy) waited to help carry her into the car. She also started letting me carry her as bit more. After months of me telling her she is too big she needs to walk, I now have to convince her she is not too big, I can carry her. It was a relief to get through to her and know she feels safe with me.
Sunday she wanted to go into the playroom so the girls got the walker and helped her, she fell which was scary but no real damage was done. The girls learned an important lesson to get one of us to help support Eden while she walks.
We are back in Md, by tomorrow Eden should have added 1 cm to her leg. We have a check up with the Dr on Th, we hope for good news. PT says all is going well and they think it is realistic for us to stick with them for two more weeks then begin PT at home. So, fingers crossed. We are here just with Eden. My family has really stepped up. My 20 yr old niece is with the kids for a two days then my sister. And of course my parents are always there to help; feed us, entertain the kids, laundry, etc, my mother is making covers for the fixator which has been a huge help. Eden does not like looking at it much, and well, who can blame her? We drive home Wed to get them and will finish the week here together. The kids said they will stay here as long as we want, it is fun. So I guess our hope of making it seem like a vacation is working. The 3 hours we spend at the hospital in the am doesn't ruin it for them. What great kids. Eden is not happy to be here without them, so I hope Wed comes soon.
Eden is still very scared and in pain, being around her brother and sister is def a comfort to her. Thank g-d Chris is here with me, with barely standing it takes both of us to get her ready for PT without hurting her. 4 hands are better then 2! I always joke I do not believe in evolution because moms would have more hands....and Chris is great at playing games and I handle the soothing times and meds. We make a good team. He returns to work soon, I am optimistic Eden will be stronger so I will be able to do it on my own. The kids are willing to help, but I have to remember, they are kids. It is a fine balance not to lean on them too much, but to also let them feel they are helpful. We started her on antibiotics today because she does complain about a certain pin site hurting so the PT said to just do it, she had the fever, she says it hurts, we might as well. Poor kid, even more meds to get into her. She is sick of the meds already. We may stop the Valium before PT so at least she has one less dose of meds to take.
I have gotten ok with wound care and bandages. I do not enjoy it for a second, but we do what we have to. Chris turns the crank like a pro, guess it is the handy man in him. I have done it a few times. She does not seem to notice. Ayla is so into all of this, she has decided she wants to be a surgeon. G-d bless her, she may just do it. Jacob is fascinated by how the fixator works, but his stomach is like mine so he does not get too close, and you can see his heart breaking when Eden cries. Adina is the most shocking, she is willing to do whatever to make her little sister happy. She is not freaked like I thought she would be. I am so proud of her.
That is all for now. We are resting at the house and will run some errands later today. We told Eden we will get her some play dough - her favorite activity - we hope this will cheer her up about missing home.
My plan it to post again Thursday after the Dr appt. Stay tuned...
Eden enjoyed being home. She spiked a fever which sent us into a tailspin. Infection? Swimmers ear? Regular bug that kids get? We called the on call Dr and he had us text a picture of the pin sites that we were concerned about. He said it looks red but nothing unusual. gee, thx. But wow, technolgy can be cool. A friend came by and looked at her ears and they were clear....but by Sat the fever broke so we relaxed. Eden walked a bit at home with the walker. Everyone got really excited. By Sat night she even asked for the walker to get to the door, where her chariot (AKA Daddy) waited to help carry her into the car. She also started letting me carry her as bit more. After months of me telling her she is too big she needs to walk, I now have to convince her she is not too big, I can carry her. It was a relief to get through to her and know she feels safe with me.
Sunday she wanted to go into the playroom so the girls got the walker and helped her, she fell which was scary but no real damage was done. The girls learned an important lesson to get one of us to help support Eden while she walks.We are back in Md, by tomorrow Eden should have added 1 cm to her leg. We have a check up with the Dr on Th, we hope for good news. PT says all is going well and they think it is realistic for us to stick with them for two more weeks then begin PT at home. So, fingers crossed. We are here just with Eden. My family has really stepped up. My 20 yr old niece is with the kids for a two days then my sister. And of course my parents are always there to help; feed us, entertain the kids, laundry, etc, my mother is making covers for the fixator which has been a huge help. Eden does not like looking at it much, and well, who can blame her? We drive home Wed to get them and will finish the week here together. The kids said they will stay here as long as we want, it is fun. So I guess our hope of making it seem like a vacation is working. The 3 hours we spend at the hospital in the am doesn't ruin it for them. What great kids. Eden is not happy to be here without them, so I hope Wed comes soon.
Eden is still very scared and in pain, being around her brother and sister is def a comfort to her. Thank g-d Chris is here with me, with barely standing it takes both of us to get her ready for PT without hurting her. 4 hands are better then 2! I always joke I do not believe in evolution because moms would have more hands....and Chris is great at playing games and I handle the soothing times and meds. We make a good team. He returns to work soon, I am optimistic Eden will be stronger so I will be able to do it on my own. The kids are willing to help, but I have to remember, they are kids. It is a fine balance not to lean on them too much, but to also let them feel they are helpful. We started her on antibiotics today because she does complain about a certain pin site hurting so the PT said to just do it, she had the fever, she says it hurts, we might as well. Poor kid, even more meds to get into her. She is sick of the meds already. We may stop the Valium before PT so at least she has one less dose of meds to take.
I have gotten ok with wound care and bandages. I do not enjoy it for a second, but we do what we have to. Chris turns the crank like a pro, guess it is the handy man in him. I have done it a few times. She does not seem to notice. Ayla is so into all of this, she has decided she wants to be a surgeon. G-d bless her, she may just do it. Jacob is fascinated by how the fixator works, but his stomach is like mine so he does not get too close, and you can see his heart breaking when Eden cries. Adina is the most shocking, she is willing to do whatever to make her little sister happy. She is not freaked like I thought she would be. I am so proud of her.
That is all for now. We are resting at the house and will run some errands later today. We told Eden we will get her some play dough - her favorite activity - we hope this will cheer her up about missing home.
My plan it to post again Thursday after the Dr appt. Stay tuned...
Thursday, July 22, 2010
Lengthening - Day 4
We are one week post op, so now the focus is on limb lengthening. We have been turning the screw, and friends - it is a screw, we actually use an allen wrench!, for 4 days. 1 mm per day, so Eden's leg has grown 4 mm. We are hoping for 70 mm... The turning does not seem to bother her at all. We now do it when she is awake even.
The fixator, on the other hand, does still hurt and frighten her. She walked a bit in PT yesterday, crying the entire time, but she did it and we were all there to cheer for her. We were in the waiting area and we heard the PT cheering her on, then all the other kids in the PT started to clap for her so we got up and watched from the door and she walked over to us. we keep telling her, a bit every day. There is another girl Eden's age who we know, her name is Madeleine. We met them two years ago this fall at high holiday services at my parents synagogue. They are the ones that told us about the International Center for Limb Lenghtening in Md, and how our journey began. Maddy had surgery a few weeks ago and is walking very well with her walker. We are hoping Eden will be there as well in a few weeks. But for now, Chris is her personal transport.
Yesterday was a big day for me though..I carried Eden a bit more and helped her to the bathroom. She prefers when Chris does it because she is afraid I am not strong enough. I am worried as well, but I told her mommy can do it and she let me. It was not easy but we all survived. Chris saved all his vacation time so he is with us for a while, but eventually this will all be on me, so I need to get more comfortable. I still have a hard time touching the fixator - it is all I can do to hold back my cries demanding the Dr take this mid-evil contraption off my daughter. But I bite my tongue one day at a time and hope it will get easier on all of us.
So we are settled into the Ronald McDonald house. We arrived Wed around 12:30. Eden was asleep when we got here and pretty much slept until 4 pm with a minor interruption from us to move her into a bed from the stroller. Adina fell asleep as well, but Ayla and Jacob (aka A/J) took off to enjoy all the fun the place has to offer. There are some kid guidelines by age-
- over age 10 can be unattended but a parent must be in the house (this is true for anyone 21 and under!)
- 6 to 10 a parent must be in the area but not in the same room
- under 6 a parent must be in the same room
We plan to site see a bit so maybe this is a mini vacation as well. Eden enjoyed the playroom as well, see the picture. I had the kids clean the library area so they can be a bit helpful while here.
As for today, we wanted to let the kids sleep and Eden's PT was at 8 am, so Chris took her and I am staying back with the other kids. The house offers free txt to area attractions on a first come basis at 9 am, so I will try and get us some txt to some activity today. We also plan to go to the harbour, but in this heat we will see how long we last.
I just got an update from Chris that PT is going well. Eden has excellent motion in her knee, always a good thing, once it gets too tight it gets painful. There is an hour gap between therapy and pool time so Chris is taking Eden to the clinic to get her pin sites looked at. One looks red. Several people looked at it yesterday and said it was just healing, but Eden seemed like she was in a different kind of pain and maybe a low fever as well during the night, so better safe then sorry. We are cutting down the pain killer doses but want her to be comfy, it is a balance we are still trying to figure out.
That's all from MD for now...maybe I should wake the kids, it is almost 9 am!
Tuesday, July 20, 2010
Eden had a great first day of PT. We were asked not to stay int he room and she willingly let us walk out. We chatted a bit with other parents whose children are undergoing lengthening. The two women have daughters who are little people and they are lengthening arms and legs, this time it is legs. Amazing what this institute can do. What we are doing is cake compared to their process. After her stretching we took her across the hall to pool therapy. She was hesitant at first, but quickly caught on. It is quite a process we have to go through :
- put on bathing suit, bathing suits need to be retro fitted to get over the fixator. Some use string bikinis or cut the sides and sew in Velcro. I found adorable suits online at www.snapmeswimwear.com that have snaps on the bottom! Turns out it is a NJ mom sick of her daughter's suits touching the gross floors at the beach and swim club! Sound familiar? They go up to size 4 - check them out if you have ever been disgusted for this reason, she was very generous when we told her shy I was buying so many suits, so I would love to send some business her way.
- sanitize the shower seat
- rinse the fixator leg - this is wear Eden got excited. She took the shower head from me and had a ball washing the fixator!!!
- put her in the electronic seat to lift her and then get her into the pool - see picture above. She hesitated at first, but on the way out thought this was a cool ride.
- post therapy - shower and dress (without getting soaked ourselves, I failed at this today)
- clean pin sites
- bandage pin sites
She made it with very few doses of pain med today. Tonight she is sleeping in Ayla's bed - they are both thrilled to be together and its the first time in over a week Chris and I don't have her in bed with us (and I am blogging!!! ; ))
Bright and early we all pile into the car and head to Baltimore for the rest of the week. I hope it will be fun all being together. One thing for sure, Ayla gets to shower Eden tomorrow post pool time!!! Back home Fri, stay tuned.
Monday, July 19, 2010
Post Op Day 6
It has been an interesting few days. The highlight was definitely Ayla and Jacob returning from camp Ramah. They were gone a month and Eden was so happy to see them (well, we all were - I cried like a baby). Ayla and Jacob knew the surgery was this summer, but we decided not to tell them it was happening while they were at camp so they would not worry. They were eager to see Eden once we told them. They told us they would have liked to stay at Ramah all summer, but talked with each other about staying and decided not to ask us, and knew Eden needed them. Amazing kids...and they are right.
Eden is happiest around people. She has had two friends come visit (thank you Jessica and Molly) and these kids are great - they just play with her. They don't care she has a robot on her leg. They are short visits because Eden does get tired, but she enjoys them. The few moments of normal are good. My sisters and niece also cam e for a visit which was fun - Eden did not even care when we left to go pick up Ayla and Jacob. It was great of them to come check in on us. My parents of course are a constant source of support and help. Eden lights up around them. My 20 year old niece seemed a bit jealous my dad cuddles with Eden, she does not recall him being cuddly when she was little.
Some wonderful people have also sent dinner and some goodies - it is all is very much appreciated.
Now for some meaty stuff...
We had an orientation at PT today. We decided to drive back and forth to give A and J time at home after being gone for a month. So we will drive it a few days and on Wed we all go up to stay at the Ronald McDonald house. We will be there for three weeks pretty much except on weekends.
PT was INTENSE. Lots of kids with fixators - Chris calls the hospital a factory. They were happy with Eden's preliminary range of motion. They asked how many cent, we were going for and we said 7 - two therapists said wow. A bit daunting. They said it is aggressive but Dr Standard knows what he is doing. They also said the first 2 or 3 cent, will be easy, it is the last few that the motion gets compromised and stretching is at once more difficult and more important. There were older kids in the room with fixators on both thighs and shin bones. They were moaning and crying in pain. It was hard to be in the room. Eden did not notice much, she managed to stay focused on Dora the Explorer, but she was really doped up. Super potent tylenol and valium, breakfast of champions. The PT got her to stand with the walker and take a few tiny steps. We were standing across the room encouraging her to come to us. Def reminiscent of a baby's first steps. But remember, we have 4 kids, we never encouraged her to walk, it was easier when she did not. But our kids were all early walkers any way. We hope this trend will continue through this process and give her strength. She cried while doing it, but she did it. We will hope for a bit more each day.
They showed us where pool therapy will be and the process. For all of you saying how strong I am, this is where I lost it. This is all so complex. and I am not into gore, I am the one that can not watch a medical show and now they are talking about pin site care and infectious diseases and sanitizing and OMFG! I am sure eventually I will get the hang of it, but this is not going to be easy. We had no idea what was coming. Eden goes into the pool tomorrow and seems excited, little does she know it aint like it used to be. No Dad throwing her around...we will see how long she thinks it is fun. Lets hope for the best. The therapist said pool may not be so critical for Eden since she is so young, but they will try and see what happens.
We also explained our plan is to start PT there but then continue at home and maybe just come to them once a week to verify all is going according to their plan. They seem optimistic three weeks may be enough time with them. Of course, she said Eden was one of the easiest 3 year olds she ever worked with, that is our Eden.
We drove by the Ronald McDonald house to check it out and make sure there will be room for all of is and it does seem it will be ok. So we left home around 6:30 and were home by 2. Not too bad. Eden was doped the entire time. It made it easy I guess, but weird. We will see what happens tomorrow when we dose her. BTW - the meds are requested by the DR and PT so she is not in pain or too stressed during therapy. I do not support drugging 3 year olds as a normal practice. We are cutting down the pain meds during the day to every 6 hours instead of 4. She seems to be handling it well.
Tonight Ayla, Chris and I cleaned the pin sites. Well, mostly Chris and Ayla, I find it pretty gross. I will have to get used to it, but it is going to take some time. Or, I may keep Ayla by me at all times. She is remarkable. She better be a Dr, it would be a waste if she was not. She had a gentle touch and such a calming manner with Eden, Eden even asked Chris to stop and let Ayla do it! Jacob will do anything for Eden, he is at her service, but this stuff is not for him either. It pains him to see her like this, he has had to leave the room a few times to collect himself. But he is so attentive to her needs, she is lucky. And Adina, she is loving Eden and paying with her a ton.
A few other small milestones, Eden sat at the dinner table for a short time with us, a first. She was on Chris's lap, but she was with us. I hope each day we can get a bit more normal.
Chris has turned the crank for two days and it doe snot seem to hurt her at all, that actually seems to be the easy part. If it all works as they say, she has added 2 mm in length in two days.
I guess that sums up where we are, another early day tomorrow to get to PT by 9 am. Thank g-d Chris does not mind driving....g'night
Eden is happiest around people. She has had two friends come visit (thank you Jessica and Molly) and these kids are great - they just play with her. They don't care she has a robot on her leg. They are short visits because Eden does get tired, but she enjoys them. The few moments of normal are good. My sisters and niece also cam e for a visit which was fun - Eden did not even care when we left to go pick up Ayla and Jacob. It was great of them to come check in on us. My parents of course are a constant source of support and help. Eden lights up around them. My 20 year old niece seemed a bit jealous my dad cuddles with Eden, she does not recall him being cuddly when she was little.
Some wonderful people have also sent dinner and some goodies - it is all is very much appreciated.
Now for some meaty stuff...
We had an orientation at PT today. We decided to drive back and forth to give A and J time at home after being gone for a month. So we will drive it a few days and on Wed we all go up to stay at the Ronald McDonald house. We will be there for three weeks pretty much except on weekends.
PT was INTENSE. Lots of kids with fixators - Chris calls the hospital a factory. They were happy with Eden's preliminary range of motion. They asked how many cent, we were going for and we said 7 - two therapists said wow. A bit daunting. They said it is aggressive but Dr Standard knows what he is doing. They also said the first 2 or 3 cent, will be easy, it is the last few that the motion gets compromised and stretching is at once more difficult and more important. There were older kids in the room with fixators on both thighs and shin bones. They were moaning and crying in pain. It was hard to be in the room. Eden did not notice much, she managed to stay focused on Dora the Explorer, but she was really doped up. Super potent tylenol and valium, breakfast of champions. The PT got her to stand with the walker and take a few tiny steps. We were standing across the room encouraging her to come to us. Def reminiscent of a baby's first steps. But remember, we have 4 kids, we never encouraged her to walk, it was easier when she did not. But our kids were all early walkers any way. We hope this trend will continue through this process and give her strength. She cried while doing it, but she did it. We will hope for a bit more each day.
They showed us where pool therapy will be and the process. For all of you saying how strong I am, this is where I lost it. This is all so complex. and I am not into gore, I am the one that can not watch a medical show and now they are talking about pin site care and infectious diseases and sanitizing and OMFG! I am sure eventually I will get the hang of it, but this is not going to be easy. We had no idea what was coming. Eden goes into the pool tomorrow and seems excited, little does she know it aint like it used to be. No Dad throwing her around...we will see how long she thinks it is fun. Lets hope for the best. The therapist said pool may not be so critical for Eden since she is so young, but they will try and see what happens.
We also explained our plan is to start PT there but then continue at home and maybe just come to them once a week to verify all is going according to their plan. They seem optimistic three weeks may be enough time with them. Of course, she said Eden was one of the easiest 3 year olds she ever worked with, that is our Eden.
We drove by the Ronald McDonald house to check it out and make sure there will be room for all of is and it does seem it will be ok. So we left home around 6:30 and were home by 2. Not too bad. Eden was doped the entire time. It made it easy I guess, but weird. We will see what happens tomorrow when we dose her. BTW - the meds are requested by the DR and PT so she is not in pain or too stressed during therapy. I do not support drugging 3 year olds as a normal practice. We are cutting down the pain meds during the day to every 6 hours instead of 4. She seems to be handling it well.
Tonight Ayla, Chris and I cleaned the pin sites. Well, mostly Chris and Ayla, I find it pretty gross. I will have to get used to it, but it is going to take some time. Or, I may keep Ayla by me at all times. She is remarkable. She better be a Dr, it would be a waste if she was not. She had a gentle touch and such a calming manner with Eden, Eden even asked Chris to stop and let Ayla do it! Jacob will do anything for Eden, he is at her service, but this stuff is not for him either. It pains him to see her like this, he has had to leave the room a few times to collect himself. But he is so attentive to her needs, she is lucky. And Adina, she is loving Eden and paying with her a ton.
A few other small milestones, Eden sat at the dinner table for a short time with us, a first. She was on Chris's lap, but she was with us. I hope each day we can get a bit more normal.
Chris has turned the crank for two days and it doe snot seem to hurt her at all, that actually seems to be the easy part. If it all works as they say, she has added 2 mm in length in two days.
I guess that sums up where we are, another early day tomorrow to get to PT by 9 am. Thank g-d Chris does not mind driving....g'night
Friday, July 16, 2010
Homecoming
Well, Ronit spoke to most of what I was going to post about but I wanted to add a bit. It was a great feeling to be home again. Especially after the night we had and the fun we we had with the OT before we left the hospital. When we got home Eden got comfortable on the couch with Savta doing sticker books and other activities.
While they played I ran out to get our new wheelchair. We got a Bob jogging stroller that she fits in nicely. To try it out the four of us walked over to our friends the Keims who are just around the corner. It was nice to be out of the freezing hospital room so I didn't mind the 90 degree heat at 6pm. The Keims were having a going-away party for their daughter Sammy. They had a women painting the girls nails and eden even got in on the fun!
It was cute. While at the party she started showing everyone her "robotic" leg. It was good to see her getting more comfortable with this device on her leg. While at the party she also ate for the first time in 12 hours. She had pretzels, yogurt, and some cookie cake. After we left the party and came home she had some ice cream as well. She seems back to being herself again.
Now we are trying to figure out how to sleep. She has to be woken up to take her pain medicine every 4 hours. Its like having a newborn again. We moved a bed into our room next to ours so she can sleep with us.
Its 10pm now and time for us all to go to sleep. We'll let you know how the night goes.
Enjoy
While they played I ran out to get our new wheelchair. We got a Bob jogging stroller that she fits in nicely. To try it out the four of us walked over to our friends the Keims who are just around the corner. It was nice to be out of the freezing hospital room so I didn't mind the 90 degree heat at 6pm. The Keims were having a going-away party for their daughter Sammy. They had a women painting the girls nails and eden even got in on the fun!
It was cute. While at the party she started showing everyone her "robotic" leg. It was good to see her getting more comfortable with this device on her leg. While at the party she also ate for the first time in 12 hours. She had pretzels, yogurt, and some cookie cake. After we left the party and came home she had some ice cream as well. She seems back to being herself again.
Now we are trying to figure out how to sleep. She has to be woken up to take her pain medicine every 4 hours. Its like having a newborn again. We moved a bed into our room next to ours so she can sleep with us.
Its 10pm now and time for us all to go to sleep. We'll let you know how the night goes.Enjoy
Post Op Day 3
The day did not start off so well. The nurse took Eden's catheter out last night around 8 then she went to sleep. At 2 pm she came in to give pain meds and informed us Eden must go on the potty or they wouldn't discharge and anted us yo try and get her to go. Again, it was 2 am! This did not go well, it resulted in a very upset Eden. Obviously half asleep, doped and tired she did not go. We finally got her to calm down and we agreed to try again in the morning - 6 am. Imagine trying to fall asleep after that, the adrenaline was pumping. I think I fell asleep finally at 4:30 and at 6 am, there was nurse Kristen, as promised. Eden was asleep so we had to wake her. Again, this did not go over well, but Chris held her over the toilet and or trooper once again came through and made pee! We watched some TV and all fell back asleep. We awoke to PT, OT, PA and Social Worker visits. Good news was the discharge papers were signed but they still wanted a PT session, we had to get meds and OT was going to make a plate to help keep her foot straight, it was flexed which could lead to nerve complications. It was ridiculous, we waited around all morning and the plate is ridiculous. We will figure out some thing netter on our own, The OT was a tool, clueless. She freaked Eden out again, just what she needed. But we calmed her down and where out of there by 2 pm. We arrived home to get Adina off the camp van, it felt so good to have her in my arms.
Chris ran out and got the BOSS, and Eden said no that is for babies. But she got in and was pretty comfy. We walked Adina over to her friends house who is leaving for sleep away camp tomorrow for a GNO send off. There were a few girls there and Eden finally livened up and was playful, she started showing her robot leg to people! So, definitely a good move taking her out.
We got home and Eden went potty twice, she even managed to sit on it herself, not comfortably, but she did it and made all her business. I am sure it will get easier each time.
We hope to get her standing tomorrow, but she FREAKED when PT tried it today. They say it is normal, so baby steps. She will be walking in no time, positive thoughts.
Chris will do the next post, stay tuned...
Chris ran out and got the BOSS, and Eden said no that is for babies. But she got in and was pretty comfy. We walked Adina over to her friends house who is leaving for sleep away camp tomorrow for a GNO send off. There were a few girls there and Eden finally livened up and was playful, she started showing her robot leg to people! So, definitely a good move taking her out.
We got home and Eden went potty twice, she even managed to sit on it herself, not comfortably, but she did it and made all her business. I am sure it will get easier each time.
We hope to get her standing tomorrow, but she FREAKED when PT tried it today. They say it is normal, so baby steps. She will be walking in no time, positive thoughts.
Chris will do the next post, stay tuned...
Thursday, July 15, 2010
Post Op Day 2
Very interesting and productive day. Eden woke up in a great mood, alert, chatty and even ate a pink frosted donut from DD. The PT came by, she is sweet, her name is Brita, and we did PT. I did most of it this time with Brita showing me what to do. Moving Eden's leg and holding the fixator was freaky. I could feel the metal, but I kept it together.
We took Eden for another walk in the wagon to the playroom. I brought my blanky with me, (yes, I have a blanky that my grandma made me!) and that is all Eden wanted to cover her up. Once in the playroom, we had fun. The toys are so-so, missing lots of pieces but we made do. Chris was good at improvising games. The PA came to talk to us about pain managmeet and options, and was trying to sway us to keep the epideral in longer, the longer in the longer the stay, so we wanted to see about just bringing the dose down and see what happens. When she looked at the monitor she realized the dose was already pretty low, so based n how well Eden was doing she agreed to go ahead and stop the drip. We gave her oral pain meds and she seemed fine. Next they removed the catheter and then the IV, so she is tube free. That means, she can be released tomorrow!
We had our first lesson on pin cleaning. They call the screws going into Eden's bones pins. Nice try but lets call it what it is, they are screws in our daughters leg. And it is nasty. There are 9 of them. Eden was hesitant at first but started to touch the fixator and was counting the screws. I am sure each day it will get less strange for all of us. We are instructed to not clean them on a regular basis, only when there is puss (yuck) etc. Otherwise we just rinse with water and keep covered with gauze. Keep it covered? No problem. Ayla gets home Sunday and she loves this nasty stuff, there is a good chance she can do it for us! We were also told it is not a matter of if it gets infected, more of a when. We were told to constantly have a Rx for antibiotics and pain killer and we should keep an eye when we are running low. Most pharmacies do not carry the pain killer they will give us because it is so strong so when we are here for our check ups every two weeks we should be sure to get a refill if we are low. No one said this would be easy, but it is pretty insane when you think what we are doing!!
We got the walker and wheelchair today. I tried to lift the wheelchair and that was not happening so we sent it back. We are buying a BOB jogging stroller instead - that was recommended by several people. I need to be able to get her in and out of the car and with that wheelchair it was not happening. She isnt too into the walker but we will ask Adina to use it for a few minutes and I am sure that will make Eden want it. Guess sibling rivalry can sometimes be a good thing.
Eden managed to stay awake most of the day, she finally napped around 3. Chris and I tried to rest but the constant flow of people into the room is ridiculous. There was no time for rest with OT, PT, Social Worker, anesthesia, PA, Rabbi, resident, fellow, RN, Pharmacist and I dont even know who some of the other people were. I am sure you know this, but there is no rest in a hospital. Our RN tonight is awesome and has been a great help - we had her Tues also. She managed to get the orders changed so she would not have to wake Eden so often during the night. But, she did strongly recommend we give her pain meds every 4 hours, even during the night for the first week. We are equating this to having a new born. But at least she is potty trained, can feed herself and talk....
We plan to be home for the weekend, Ayla and Jacob return from sleep away camp Sunday (YEAH) and we will drive back and forth to PT for Mon and Tues so the kids can have some time at home before we drag them down with us.
Technology has also been great. I chatted online with my uncle and a few cousins in Israel today and am hearing from people I have known my entire life and through different phases of life. It is pretty cool. Our family and friends from near and far are with us through all of this, it is a good feeling. : )
As for this pic, she was not getting sick. Since she had a stomach bug a few weeks ago she keeps saying I am going to be sick, and she did get sick twice on Tuesday, but has been fine since then. But, the bucket has become a crutch for her and she is even sleeping with it at times. Oy...but if this is the worst, we are lucky! Needless to say, it is coming home with us.
One last thing, a special shout out to a few people...
- The Fox family that hosted us Monday night and visited to keep us sane. Good luck with the flood...
- The amazing people who saw the post about sending e-cards and were right on it, Eden loved opening them
- Thanks to those that sent balloons, Eden loves them and cant wait to show her sister
- Thanks for the activities to help keep her busy, stickers and coloring and nail polish, we had fun
- And a special friend who figured out this online craziness just to stay informed, you are the best Joel!
Send Eden an e-card
http://www.lifebridgehealth.org/sinaibody.cfm?id=2934
send Eden a card electronically, she is room 372
Wednesday, July 14, 2010
Day 1 post op
All in all, we had a good night. Eden slept through minus the wake up every 4 hours for vitals. She handled it like the trooper she is and went right back to sleep. I slept in bed with her and enjoyed being cozy, but sleep not so much. Chris slept on a pull out chair in the room and it was ok. Considering he never sleeps during the week, he actually got a decent night!
We ordered all of Edens favorites for breakfast, but she did not eat. Thanks to advice from many of you, Chris ran out and got DD munchkins for the nurse staff. They seemed to enjoy it.
We had a visit from OT and PT and got Eden into a wagon and took her for a ride to the playroom, She resisted at first but them did not want out of the wagon, She enjoyed playing with a baby doll.
The highlight was def a visit from her grandparents, as you see in the picture. Eden livened up and enjoyed playing with them. She is still not fond of the fixator, but when our surgeon came to visit she actually said yes to allowing him to look at it. She even says no to me and Chris. Interesting. He is pleased with how it looks.
Eden had her first PT session today and handled that well. Could be because of the epideral...but am thankful for her not feeling pain.
Her diet today consisted of pretzels, goldfish, potato chips, gummy bears, a banana and yogurt. Not the best, but we are happy to get anything we can in her. She spiked a bit of a fever this eve, but the dr said that is normal. So no worries yet.
We ended the night with her playing and she pulled out her IV. The nurse put a new one in, she did not love it but handled it well. The nurses said they wish every three year old was like her.
Tomorrow we get her wheelchair and walker, fun. We also learn how to clean her fixator, this will be a daily ritual.
So, like I say, game on.
Again, thx all for the text, emails, calls, facebooks, etc. The outpouring of support is keeping us going.
Good night for now....
Tuesday, July 13, 2010
So this is what it looks like. There is a bar attached to her thigh bone, yes attached and it sticks out. The bone was broken right above the knee. Our Dr does pretty work, minimal scarring but he said when she is 18 he will fix her up nice with plastic surgery and really get rid of the scars.
There are also screws below the knee with a hinge connecting the pieces to provide support and re-align the knee as it was not quite right.
It is pretty weird and remarkable at the same time. It will take some getting used to, but she is still our beautiful Eden, only a bit bionic. She did not want us to take a picture, so she is well aware that there is something different about this. being the meanies we are, we took it anyway, but waited until she was asleep.
One last comment on the day, then we will try to sleep, we have only been up for 17 hours. A special thanks to Uncle Amnon who came by for a visit. For once his business travel worked in our favor - he was in the area (kind of!) Brightened up the entire day
we are settled into Eden's room, we luckily got a single so Chris and I both plan to spend the nights here with her. She is drugged but comfortable. We showed her the fixator (pic to come soon) and she was expressionless. Guess that is good. She told us she is feeling better. She was pretty scared post op, but seems to be ok now.
Eden is in surgery. As the Dr put it, it will be like 3 seconds to her, 3 hours for him and 3 weeks for us. We wait. She seemed a bit scared but handled it all very well. She is an amazing little girl.
Yesterday pre-op we had xrays and the leg difference is measuring 6 cm now. After surgery last year it was under 5, so the growth continues to slow down. After this surgery, they hope to make her shorter leg 2 cm longer then the "normal" leg so in time it will even out.
The Dr said studies are showing this surgery actually also speeds up the growth rate, so if her leg was only growing at 70%, it may start to grow at 80&. But as in life, no guarantees. He said she will most likely need another surgery around age 9, but we will cross that as we get closer because medicine/technology is changing every day, and he envisions this process will even be different. They are experimenting with internal fixators. That would be nice!
Will post more when we are settled in her room...
Yesterday pre-op we had xrays and the leg difference is measuring 6 cm now. After surgery last year it was under 5, so the growth continues to slow down. After this surgery, they hope to make her shorter leg 2 cm longer then the "normal" leg so in time it will even out.
The Dr said studies are showing this surgery actually also speeds up the growth rate, so if her leg was only growing at 70%, it may start to grow at 80&. But as in life, no guarantees. He said she will most likely need another surgery around age 9, but we will cross that as we get closer because medicine/technology is changing every day, and he envisions this process will even be different. They are experimenting with internal fixators. That would be nice!
Will post more when we are settled in her room...
Tuesday, July 6, 2010
Thursday, June 24, 2010
GAME ON
lengthening has begun. The bone was broken (yes, on purpose) and a fixator was attached. We turn a scrw 4 times a day, which will expand the leg 1mm per day. We are hoping to get 70 mm, so will do this for 70 days....
We still leave the fixator on for 2/3 months to allow support while the bone hardens, then another surgery to remove it....
Your calls, texts, emails, facebook messages have given us so much support, we thank you!!
Can't wait to show Eden one day how much she is loved by all.
We still leave the fixator on for 2/3 months to allow support while the bone hardens, then another surgery to remove it....
Your calls, texts, emails, facebook messages have given us so much support, we thank you!!
Can't wait to show Eden one day how much she is loved by all.
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