Monday, August 16, 2010
Nerve Decompression Surgery
Lydia has been very uncomfortable and in pain for many weeks now. She feels "pins and needles" as if her foot is asleep. But this like 100 times worse, to the point of being unbearable. The surgeon says it's because the nerve was damaged during or after the surgery, or it's being pinched inside by something. So, here we are again in surgery. :( Today they will open it up and release the pressure on her nerve which will hopefully ease her discomfort and we hope she will regain movement in her foot which up to now has been minimal. I hate the idea of putting her through ANOTHER surgery, but there seems little choice. Tim.
Monday, July 26, 2010
Bad Summer.
Sorry for being negative! I took Lydia to see the doctor today because of unbearable ear pain. She has an infection and possible strep throat. While we were there we had the opportunity to check her weight using the accurate scales. Her pre-op weight on the same scales on June 16th was 33 1/2 lbs. Today, July 26th, it was 28 3/4 lbs. She has lost nearly 5lbs. She looks nothing like her identical twin, Eliza.
Tim and I reached an all time low, last weekend as we watched her reject one too many small meals and we made the decision not to give her the strong pain medicine that she needs for the nerve episodes. We figured that the "not eating" was becoming more worrisome than the distress and pain of the pins and needles.
We have the number of an acupuncturist and we are going to give him a try. Nothing to lose there. Meanwhile she is on cyproheptadine (as of today) to increase her appetite, Neurontin- for her nerves, antibiotics for her ear/throat infection, and then just the mild motrin/tylanol for the nerve pain.....oh and as much food/drinks as she will let me give her, which up to now has been minimal.
I am a wreck!
Tim and I reached an all time low, last weekend as we watched her reject one too many small meals and we made the decision not to give her the strong pain medicine that she needs for the nerve episodes. We figured that the "not eating" was becoming more worrisome than the distress and pain of the pins and needles.
We have the number of an acupuncturist and we are going to give him a try. Nothing to lose there. Meanwhile she is on cyproheptadine (as of today) to increase her appetite, Neurontin- for her nerves, antibiotics for her ear/throat infection, and then just the mild motrin/tylanol for the nerve pain.....oh and as much food/drinks as she will let me give her, which up to now has been minimal.
I am a wreck!
Saturday, July 3, 2010
Back Home
Well, we're back! Again, it has been an emotional roller coaster ride. Dr Paley saw her the morning we flew home just to see if we did need to cancel our flight and stay for another operation. He said that what had happened was very uncommon. And he figured that her loss of sensation was caused by the tourniquet which they put on her to stop the blood flow so that he can do all his surgical artistry. There are parts of her foot that have gone to sleep and the pins and needles sensations that she experiences as the nerves try and wake up again, are incredibly strong and send her reeling and thrashing around. Dr Paley said it could take weeks for her to recover from this. So she is on the strong Roxicet medicine and now a new medicine for her nerves, the result being that her appetite is depleted and she is a little dizzy. During this trip Lydia watched one of my favorite children's films called "Pollyanna". I bought it for her and Eliza, on their birthday and so Lydia watched it again and again. So being inspired by this wonderful story, I am now going to play the glad game and say....I am glad we are home, I am glad that Lydia will improve, I am glad that we are lucky to be able to have the amazing Dr Paley as Lydia's surgeon, I am so glad that Phyllis came with us to help out (She is amazing) and I am glad for all the love we recieve from family and friends. Thank you, thank you.
Sunday, June 27, 2010
AN UPDATE FROM GRANDMA PHYLLIS (Chrissie has gone to bed)
Liddie has progressed this week just as the doctor thought she would; she left the hospital on Saturday afternoon. We came directly to Quantum House (it's just like a Ronald McDonald House) on the same campus as St. Mary's Childrens Hospital here in West Palm Beach. You can see on the photos the bandaged leg and the brace she has to wear when she's in the wheelchair. The sponge between her legs has to be kept in place when she's in bed. She is such a trooper, and a brave little girl.
She's had an ongoing fever off and on since Sat. evening. It's better today, and was only mild this afternoon. We were able to give her a sponge bath and wash her hair tonight - she had her favorite strawberry ice cream and went to sleep feeling the best she has.
We'll be going over to the hospital Monday morning early to remove the bandages, and then they will put a cast from just below the knee and around the foot. She wants a "red' cast since that is her favorite color - if they have it! Of course, everyone loves her at the hospital and I'm sure they'll try to give it to her!
I'm so glad I was able to be here, and help out. It's taken both of us to lift her sometimes, and she has kept us hopping!
All my love to everyone; thanks for all the cards, best wishes, and love you've given Liddie. Good Night, Eliza -Liddie misses you!
Saturday, June 19, 2010
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Hip Surgery Next Week!
Lydia has a mild case of congenital hip dysplasia, a condition related to her Fibula Hemimelia. We knew from early on that at some point she would need a pelvic osteotomy (hip surgery) to correct it. In a way this is a preventative measure; it will prevent a possible hip dislocation later on in life. This is critical to maintaining mobility, since people who have hip dislocations often suffer permanent disability of some level as a result. This is especially important for a child undergoing leg lengthening, since it adds pressure to the hip. The research I have done and testimonials from other parents indicate these procedures are *very* successful and rarely are there complications. So the time has come, she and her Mom are off to Florida tomorrow, for surgery on June 22nd. I will stay at home with Eliza this time.
The surgeon, Dr. Paley (truly the best of the best!), plans the following procedures:
- Dega Pelvic Osteotomy
- Reduction of hip subluxation
- Ligamentum Teres reconstruction
Stay tuned for more news!
- Tim
The surgeon, Dr. Paley (truly the best of the best!), plans the following procedures:
- Dega Pelvic Osteotomy
- Reduction of hip subluxation
- Ligamentum Teres reconstruction
Stay tuned for more news!
- Tim
Thursday, January 7, 2010
Monday, August 31, 2009
Implant Removed
When they removed Lydia's fixator back in September '08, they put a rod down the center of her femur, to add strength as the leg healed. Today they removed it in a short outpatient procedure. Back home in a few days...
Tim
Tim
Tuesday, December 23, 2008
Leg Fracture and an Unplanned trip to Baltimore
Well, we're back in Baltimore (Lydia & Tim this time) for a unplanned and untimely visit just days before Christmas. Lydia's X-ray last week showed a fracture in her tibia and a 10 degree sideways bend at the lengthening site, so we had to rush off to get it looked at. Apparently it's not uncommon in these cases, since the bone is still not fully hardened. So after a looooong flight with a 4-hour delay in Vegas, we arrived in Baltimore at 4:30am. Lydia was in high spirits, drawing pictures for strangers, saying HI to everyone, even carrying her own boarding pass and high-fiving the security guards!
We spent the next day (Monday) in the clinic getting X-rays and consulting with the surgeons. They said they would either put a rod inside the tibia to hold it in place and keep the bone from bending further, or just cast it for 4 weeks, and they'd decide that after the surgery started. Either way they would also put an 8-plate -- looks kind of like a big figure-eight shaped staple -- which over time will make the bone grow back into a straight line. It was an exhausting day for me, but Lydia was a real trooper, making friends in the playroom and having a ball. That evening in the Ronald McDonald house, what seemed like the entire Baltimore police department and every Maryland State Trooper and County Sheriff in the state along with one Santa Claus came racing up to the house with sirens and lights flashing and tromped inside with armloads of presents for the kids. There must have been a hundred of them, and enough presents for 5 times the number of kids in the house. The house director made a speech and talked at length about how this place changes the lives of so many children from all over the world. There are some pretty hard cases here right now - liver transplants, leukemia, cancer, total disablement plus more mild problems like Lydia's. It was touching, and caused more than a few tough-looking cops to blink back tears. I struggled as well. Poor Lydia was just too tired and I had put her to bed before they arrived. I did sneak downstairs and got her a present later on.
So on Tuesday we went in for surgery at 6am, and they decided to skip the rod and just cast her, plus put the eight-plate in. We're glad because it meant it was a short, simple surgery with a quick recovery. She does have to wear a removable cast for 4 weeks, which is a bummer since she was just starting to get around really well after the fixator was removed in September. She's been riding scooters and tricycles and really "blooming" which was great to see after the long time in the fixator which had kept her down all spring and summer. As usual, she accepted all the surgical prep without a fuss, but woke up from the anesthesia pretty unhappy - but that's normal.
This morning they almost cancelled the surgery completely, because she had signs of a cold or stomach bug, and anesthesia can be very risky under those circumstances. So she had an examination by an impressive team of doctors, anesthesiolgists, and surgeons and they said she was OK to go ahead, but at one point in the discussions I began to panic and almost cancelled the whole thing! Needless to say this did not make me less anxious in the waiting room during the surgery. I'm glad she was well enough to go ahead, because otherwise we'd have had to stay here through Christmas, or return having accomplished nothing and had to return in January by which time the bone might have bent even further.
This trip has been the hardest yet on me. Sometimes it seems like Lydia is the tough one and I am the one losing it.
Anyway, we have a 7am flight tomorrow, Christmas Eve, so will be getting up at 3:30am so I need to get some dinner and get to bed. It will be a relief to be home for Christmas. :)
Tim
We spent the next day (Monday) in the clinic getting X-rays and consulting with the surgeons. They said they would either put a rod inside the tibia to hold it in place and keep the bone from bending further, or just cast it for 4 weeks, and they'd decide that after the surgery started. Either way they would also put an 8-plate -- looks kind of like a big figure-eight shaped staple -- which over time will make the bone grow back into a straight line. It was an exhausting day for me, but Lydia was a real trooper, making friends in the playroom and having a ball. That evening in the Ronald McDonald house, what seemed like the entire Baltimore police department and every Maryland State Trooper and County Sheriff in the state along with one Santa Claus came racing up to the house with sirens and lights flashing and tromped inside with armloads of presents for the kids. There must have been a hundred of them, and enough presents for 5 times the number of kids in the house. The house director made a speech and talked at length about how this place changes the lives of so many children from all over the world. There are some pretty hard cases here right now - liver transplants, leukemia, cancer, total disablement plus more mild problems like Lydia's. It was touching, and caused more than a few tough-looking cops to blink back tears. I struggled as well. Poor Lydia was just too tired and I had put her to bed before they arrived. I did sneak downstairs and got her a present later on.
So on Tuesday we went in for surgery at 6am, and they decided to skip the rod and just cast her, plus put the eight-plate in. We're glad because it meant it was a short, simple surgery with a quick recovery. She does have to wear a removable cast for 4 weeks, which is a bummer since she was just starting to get around really well after the fixator was removed in September. She's been riding scooters and tricycles and really "blooming" which was great to see after the long time in the fixator which had kept her down all spring and summer. As usual, she accepted all the surgical prep without a fuss, but woke up from the anesthesia pretty unhappy - but that's normal.
This morning they almost cancelled the surgery completely, because she had signs of a cold or stomach bug, and anesthesia can be very risky under those circumstances. So she had an examination by an impressive team of doctors, anesthesiolgists, and surgeons and they said she was OK to go ahead, but at one point in the discussions I began to panic and almost cancelled the whole thing! Needless to say this did not make me less anxious in the waiting room during the surgery. I'm glad she was well enough to go ahead, because otherwise we'd have had to stay here through Christmas, or return having accomplished nothing and had to return in January by which time the bone might have bent even further.
This trip has been the hardest yet on me. Sometimes it seems like Lydia is the tough one and I am the one losing it.
Anyway, we have a 7am flight tomorrow, Christmas Eve, so will be getting up at 3:30am so I need to get some dinner and get to bed. It will be a relief to be home for Christmas. :)
Tim
Thursday, September 11, 2008
FIXATOR OFF!! BRIGHT PINK CAST ON!!!!
Hi again
It's the next day. We are still in the hospital but all being well we'll be going home today. Home as in the RMH- which by the way is looking pretty flippin' good!! They have renevated all the rooms and they are fantasic! And another thing to report.......when we arrived there 2 days ago....the winner of last seasons Hell's Kitchen - ROCK!...cooked our dinner!!!!!!!!!!!!!!!!!!!!! WOWWWW!!!!! If Gorden Ramsey likes his food then we surely do!!!! He made his signiture dish of crab cakes served with rice and a greek yogurt dip with salad and homemade dressing....followed by a hot peach crunch served with vanilla icecream- yuuummmmyyyy!!! If you check out the RMH Baltimore website there is likely to be an interview that I gave about the meals at the house!!! Yes I'm a star at last!!!!!.... So back to Lydia..!!.. She is doing fine. Sick on the first day because of the anaesthesia in her system- but that is to be expected. Dr Standard has put a rod in her femur. Her cast is full length and I have been instructed that she isn't to weight bear on her leg for 2 weeks.
One bit of shocking news is that I'm sharing a hospital room with Riley, one of the girls who is in the picture with Lydia waiting for Pam's pin care. She had her fixator removed 2 weeks ago but her femur fractured and so she had to have an emergency surgery yesterday to put a fixator back on....can you believe it. She lost the length gained when her bone fractured so she is having to go through the process again. I asked Dr Standard how many times this has happenned with other patients and he said it has only occurred twice before. That's out of about 100 cases.
So cross fingers and touch wood this doesn't happen to Lydia.
It's the next day. We are still in the hospital but all being well we'll be going home today. Home as in the RMH- which by the way is looking pretty flippin' good!! They have renevated all the rooms and they are fantasic! And another thing to report.......when we arrived there 2 days ago....the winner of last seasons Hell's Kitchen - ROCK!...cooked our dinner!!!!!!!!!!!!!!!!!!!!! WOWWWW!!!!! If Gorden Ramsey likes his food then we surely do!!!! He made his signiture dish of crab cakes served with rice and a greek yogurt dip with salad and homemade dressing....followed by a hot peach crunch served with vanilla icecream- yuuummmmyyyy!!! If you check out the RMH Baltimore website there is likely to be an interview that I gave about the meals at the house!!! Yes I'm a star at last!!!!!.... So back to Lydia..!!.. She is doing fine. Sick on the first day because of the anaesthesia in her system- but that is to be expected. Dr Standard has put a rod in her femur. Her cast is full length and I have been instructed that she isn't to weight bear on her leg for 2 weeks.
One bit of shocking news is that I'm sharing a hospital room with Riley, one of the girls who is in the picture with Lydia waiting for Pam's pin care. She had her fixator removed 2 weeks ago but her femur fractured and so she had to have an emergency surgery yesterday to put a fixator back on....can you believe it. She lost the length gained when her bone fractured so she is having to go through the process again. I asked Dr Standard how many times this has happenned with other patients and he said it has only occurred twice before. That's out of about 100 cases.
So cross fingers and touch wood this doesn't happen to Lydia.
Wednesday, September 10, 2008
September 08- FIXATOR REMOVAL!!!
Well, as I type, Lydia is under a general anasthetic and having her fixator removed! I have a pager so I am ready to go and see her as soon as it starts bleeping and flashing!
It has been a while since I last wrote so here's the update. Since we returned to California, Lydia has had to have 5 therapy sessions a week, with Memi to try and increase her knee bending/knee straightening range. Unfortunately, busy family life has proved too much for me, and so the exercise regement that I took on with Lydia in Baltimore, to help reinforce the ground gained by the therapist fell by the way side when we were back home. It doesn't help that it is emotionally gruelling to hear her shout/cry out with pain and when there is so much else to do....well need I say more. I'm so sorry Lydia. There have been many moments on this journey where I have wondered whether we took the right path. Maybe the option to amputate her left foot and fit a prosthetic which makes up the leg length, would have been the kinder option. I honestly don't know, all I do know is that if I had to start this journey again and I truely knew what Lydia and I were up against with the lengthening, I would probably take her down the amputation route. Her leg is so stiff, her knee hardly bends and causes her so much pain. I don't know if she'll ever get her range back , especially with me not being tough enough with her. Tough love they call it and it is so true....
Sorry this hasn't been very positive.
It has been a while since I last wrote so here's the update. Since we returned to California, Lydia has had to have 5 therapy sessions a week, with Memi to try and increase her knee bending/knee straightening range. Unfortunately, busy family life has proved too much for me, and so the exercise regement that I took on with Lydia in Baltimore, to help reinforce the ground gained by the therapist fell by the way side when we were back home. It doesn't help that it is emotionally gruelling to hear her shout/cry out with pain and when there is so much else to do....well need I say more. I'm so sorry Lydia. There have been many moments on this journey where I have wondered whether we took the right path. Maybe the option to amputate her left foot and fit a prosthetic which makes up the leg length, would have been the kinder option. I honestly don't know, all I do know is that if I had to start this journey again and I truely knew what Lydia and I were up against with the lengthening, I would probably take her down the amputation route. Her leg is so stiff, her knee hardly bends and causes her so much pain. I don't know if she'll ever get her range back , especially with me not being tough enough with her. Tough love they call it and it is so true....
Sorry this hasn't been very positive.
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