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.
Monday, August 23, 2010
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....
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