I didn't sleep last night. I haven't slept in a year and a half. But I really didn't sleep last night. I think I actually snoozed for about 3 hours, but not three consecutive hours. What am I to do? I cannot do "cry it out", not when I think that my child is in pain and that is why they are waking up. What am I to do at this point?
I yelled at the kids last night. I feel so so badly about that. I have literally cried about it all day long. I yelled at them to lie down and go to sleep. The worst thing is that it worked, for a while. They did lie down. They were frightened by my voice. OH the guilt in that!
Something has to change. I cannot do this much longer.
I emailed Ann Keppler. I didn't really know where else to turn. I also emailed Dr. Mosca's nurse in case Madeleine is feeling pain and that is why she is waking up.
Here is my email to Ann:
Hi Ann,I hope it is okay that I am emailing you. I don't know if you remember me, I attended First Weeks (and next months) with my twins, Max and Madeleine. We talked extensively about how to help with sleep issues. Well, the twins are now 18 months old (almost) and still terrible sleepers. I thought we would just manage until they were developmentally ready to 'sleep through the proverbial night' but now it is getting really problematic. They wake up from 2-4 times a night each. I'm still nursing them and do so in the middle of the night when needed. I have tried to night wean (send in the daddy, tell them milk is no more etc.) much to no avail- they scream, pull, bite, fight- it is awful! I'm not totally ready to wean them but I am starting to feel resentful toward them, which makes me feel terrible. Last night I yelled at them and I feel so horrible about that. It has come clear that it is probably time for an intervention. They attend the infant/toddler program at the Experimental Education Unit at the UW and their teacher there has encouraged me to contact you.
There is a catch with all of this. Madeleine underwent major surgery about 6 months ago. She was born with an orthopedic birth defect and had her foot amputated and two osteotomies. Sometimes she wakes up in the middle of the night crying and holding her leg and I cannot be sure that she is not in pain (they tell me kids do not experience phantom limb pain but I'm not too sure). We live in a small two bedroom in an apartment building so I am conscious of our neighbors. They share a room now but usually end up sleeping with my husband and I at some point in the night.
I know you do sleep consults but I'm not sure if we could afford you. I wanted to check in and see if you had some quick advice or if you feel like the problem is big enough that we should scrape the money together and have you intervene.
Thank you for anything you have!
And her response:
Hello Niki,
Of course I remember you and your twins - happily. You are a wonderful mother.
It sounds as though you have experienced a lot of difficult decisions and adjustments to Madeline's surgeries. And, I would trust your intuition about whether or not Madeline is experience pain in her leg by her behavior. Does the rubbing of her leg help her? That would be a way to override the pain sensations by sending other sensory sensations to her brain in the same way rubbing the lower abdomen in labor reduces the pain sensations of the contractions.
Probably the best place to start is to look at their food/milk consumption during the day and try as hard as you can to pack the calories in during the day with foods like avocado, and other calorie dense foods. If you know that are getting a lot of milk (which at this stage of lactation has more fat than whole milk) and lots of dense calories, then you could begin to try anything to soothe them at night except nursing.
I would suggest you have a look at Ferber's newest book for some ideas (I don't support all he suggests) and I really like Elizbeth Pantley's book The No Cry Sleep Solution for Toddlers and Preschoolers. I think it is much better than her book for infants.
Right now I am taking a sabbatical from parent consultations to work on the revision of Pregnancy Childbirth and the Newborn. Barb Orcutt, a colleague and wonderful nurse is covering from me. She directs the Breastfeeding Center at the Birth Center, is practical, thoughtful and smart. She joined me for several sleep consultations last month. You could contact her at bgorcutt@comcast.net if the other options didn't provide you with enough new ideas. I hope this helps. Great acknowledgment to your sensitive and thoughtful approach to parenting. ~ Ann
Yes, good ideas to try. In the mean time I will be a bad friend, an emotionally fragile mother and a complete basket case wife. My apologies to everyone this affects.
Wednesday, December 12, 2007
Tuesday, December 11, 2007
Chanuka Hanukah Hanukka Khanukkah
Whatever way you wish to spell it Hanukka has come and gone. This year we were fortunate to be invited to a candle lighting celebration. Thank you to the Goldberg/Resnik family for having us and serving delicious egg-free latkes! Madeleine loved them but not as much as she liked the peppermint truffles!
Mosaic: A Playdate
The twins and I just discovered this fantastic new coffee house in Seattle called Mosaic. If you live in or around Seattle and you haven't been to Mosaic Coffee House you better high tail your butt there, pronto! Not only is it conveniently located in the U-District (off of 45th, kind of behind Dicks) but it is a big, friendly space with free Wi-Fi, nice music and a kid play room (cutely called "demi tasse"). Yes, you heard me, a kid play room, that although it is lacking a bit in toys, it is a spacious room with tables and chairs on one side and mats and toys (including a big play house and kitchen) on the other.
Okay, so this isn't your ordinary coffee house, did I mention it is non-profit? And run by donations?
I know, cool eh? So, this morning I bought a latte, a small hot chocolate to split between the babes (ps, the only way they will drink milk :/) and a croissant. How much is that worth? I gave them $7. I love love love the idea of them donating extra profit to charities. I love the idea that they are all about community. For this reason, you have to go because if you don't they won't stay in business and this fantastic idea will fail.
Okay, so this isn't your ordinary coffee house, did I mention it is non-profit? And run by donations?
As a local, nonprofit coffee house, Mosaic exists to allow neighbors an
opportunity to come together while encouraging the building of healthy community through conversation, exciting events, and excellent coffee drinks. At
Mosaic, we believe that each guest who walks through our door is worth more than a labeled price, so we serve our food and beverages with no fixed price.
What does this mean? You decide what it is worth.
The name Mosaic came about by looking at our lives, which often resemble mosaics—filled with broken pieces. We believe a mosaic is only a mosaic when it is formed with many pieces. Here at Mosaic, when our lives are joined with others in our neighborhood and community, we have the opportunity to be part of something truly beautiful.
I know, cool eh? So, this morning I bought a latte, a small hot chocolate to split between the babes (ps, the only way they will drink milk :/) and a croissant. How much is that worth? I gave them $7. I love love love the idea of them donating extra profit to charities. I love the idea that they are all about community. For this reason, you have to go because if you don't they won't stay in business and this fantastic idea will fail.
Better idea, let's meet for a playdate! My kids loved running around like maniacs, noses running, hair stuck to their heads in a bed head kind of way! You get the idea. We scared off two other moms with a toddler each that were there when we arrived. Max was stealing snack traps and Madeleine was putting her germ laden mouth around someone elses sippy cup! Egad! Heathens!
Why is it that my kids want any sippy cup that is not their own? They can have the same exact cup with something better in it and they will still want the other kids'.
I know those other moms would have stayed longer if we hadn't arrived. Was it the runny noses? Was it my conversation?* Hhhhmmmmmm, I'll just have to go back to Mosaic when the noses aren't runny and see.
*The Mom Rule: when you are a mom and you see another mom of a child that is about the same age as your child you must converse. You must find out what you have in common, what your kids are doing that is similar, if you are a stay at home or working mother etc. Sometimes the conversation is strained and lame, sometimes it is fascinating and you are instant friends.
Thursday, December 6, 2007
Phantom Limb Pain
You have heard of this. Everyone knows about phantom limb pain. I knew about it even before my daughter had her foot amputated. The idea conjures up images of war veterans without legs, lying and crying in their hospital beds. I'm reminiscing about old M*A*S*H episodes now.
I thought about phantom limb pain and how they may affect Madeleine. I was assured that this would not happen to someone so young. Dr. Mosca told us that if we amputate young (under 2) she would not have phantom pain. He said there was no known research that showed babies to have pain after an amputation. This was one reason to do the surgery while she was young. Another reason is that she would not have attachment to that body part. Granted.
I'm not sure that I believe this now. I think that maybe children do experience phantom limb pain but cannot tell us about it therefore we think it doesn't exist. However, even without words Madeleine is a great communicator. For instance, if she wants to read more books (as a way of delaying bed time) she points to the books, the rocking chair and whines a bit. So, why then, when she cries in the middle of the night and points to the bottom of her leggie should I not assume that she is experiencing pain? She will often hold or grab the bottom of her leg at night. Once, I came in to answer her drowsy cries and she was biting at the end of her leg.
In the article highlighted above the author writes:
Phantom limb pain – pain appearing to come from where an amputated limb used to be – is often excruciating and almost impossible to treat.
He then goes on to say:
After amputation of a limb, an amputee continues to have an awareness of it and to experience sensations from it. These phantom limb sensations are also present in children born without a limb, suggesting that perception of our limbs is 'hard-wired' into our brain and that sensations from the limbs become mapped onto these brain networks as we develop.
If phantom limb sensations are normal then so too, alas, is phantom limb pain. This occurs in a majority of those who lose their limbs. (1) In fact, limbs do not need to be lost; it also occurs in conditions in which the brain is disconnected from the body, such as peripheral nerve injuries and after spinal cord injury, when an area becomes insentient (and usually paralysed).
The pain is described in various ways: burning, aching, 'as if the hand is being crushed in a vice,' etc. Such words, however, cannot fully encompass the experience of living with such a pain.
If this article is true than I can assume that Madeleine is experiencing some sensation. To ease this I rub her leg, I talk to her about it and reassure her that all is okay and she is not in a painful situation. Of course I worry about this. It makes me sad. But still, I do not regret our decision to ampute. If we had lengthened I'm assuming the pain would be greater.
Madeleine wakes up more than Max, usually. This is why I could never let her "cry it out".
I thought about phantom limb pain and how they may affect Madeleine. I was assured that this would not happen to someone so young. Dr. Mosca told us that if we amputate young (under 2) she would not have phantom pain. He said there was no known research that showed babies to have pain after an amputation. This was one reason to do the surgery while she was young. Another reason is that she would not have attachment to that body part. Granted.
I'm not sure that I believe this now. I think that maybe children do experience phantom limb pain but cannot tell us about it therefore we think it doesn't exist. However, even without words Madeleine is a great communicator. For instance, if she wants to read more books (as a way of delaying bed time) she points to the books, the rocking chair and whines a bit. So, why then, when she cries in the middle of the night and points to the bottom of her leggie should I not assume that she is experiencing pain? She will often hold or grab the bottom of her leg at night. Once, I came in to answer her drowsy cries and she was biting at the end of her leg.
In the article highlighted above the author writes:
Phantom limb pain – pain appearing to come from where an amputated limb used to be – is often excruciating and almost impossible to treat.
He then goes on to say:
After amputation of a limb, an amputee continues to have an awareness of it and to experience sensations from it. These phantom limb sensations are also present in children born without a limb, suggesting that perception of our limbs is 'hard-wired' into our brain and that sensations from the limbs become mapped onto these brain networks as we develop.
If phantom limb sensations are normal then so too, alas, is phantom limb pain. This occurs in a majority of those who lose their limbs. (1) In fact, limbs do not need to be lost; it also occurs in conditions in which the brain is disconnected from the body, such as peripheral nerve injuries and after spinal cord injury, when an area becomes insentient (and usually paralysed).
The pain is described in various ways: burning, aching, 'as if the hand is being crushed in a vice,' etc. Such words, however, cannot fully encompass the experience of living with such a pain.
If this article is true than I can assume that Madeleine is experiencing some sensation. To ease this I rub her leg, I talk to her about it and reassure her that all is okay and she is not in a painful situation. Of course I worry about this. It makes me sad. But still, I do not regret our decision to ampute. If we had lengthened I'm assuming the pain would be greater.
Madeleine wakes up more than Max, usually. This is why I could never let her "cry it out".
FH: Our Forever Label
Just as parents and kids with Autism will always be in the world of autism we will always be in the world of Fibular Hemimelia. My daughter will always be associated with it- I will always be a mother of a child with Fibular Hemimelia.
I am called back to the day when I first heard this label. It was February 20th, 2006. At the time I don't know if I could have identified a fibula on a map if I tried (thinking of those high school students now who don't know where Georgia is). Dr. Saliman said, "Let me tell you what it is called and then I will discuss the treatment..." I grabbed a pen and paper to write it down. Geez, now it is part of my daily vocabulary!
My daughter has one fibula. She now only has one foot. 5 toes. "Madeleine, how many fingers am I holding up?" "Count your toes!" Woops, we are missing some.
When Dr. S told us that many children with FH have missing toes I was horrified. Such a silly thing to be horrified about! I remember my friends, Megan and Serena, who worked in a hospital telling me about a man who had only four toes. I thought about how my child would be the one that the nurses talked about. How kids would notice she only had four toes (or three) and make fun of her in her little sandals.
When Madeleine was born with five toes I saw it as a victory. Ha, you doctors! I made a child with all ten toes! Her foot is perfect! FH, my ass.
We amputated. We took off her perfect five toed foot. I never, well almost never, regret this. I see my daughter walking around, I see her climbing stairs, I see her squatting and standing back up, bending over, lifting her leg and I never regret taking off her foot.
When I am rocking her to sleep in the middle of the night, which happens more than I'd like to admit, I am reminded of that perfect little foot. Sometimes I am surprised that that her foot is gone. Crazy. In the middle of the night in my sleepy haze I will see that short leg sans foot and for a quick moment I will be surprised. I will wonder where that foot is. I will be horrified. And then I remember and still there is little regret.
I miss it though.
I am called back to the day when I first heard this label. It was February 20th, 2006. At the time I don't know if I could have identified a fibula on a map if I tried (thinking of those high school students now who don't know where Georgia is). Dr. Saliman said, "Let me tell you what it is called and then I will discuss the treatment..." I grabbed a pen and paper to write it down. Geez, now it is part of my daily vocabulary!
My daughter has one fibula. She now only has one foot. 5 toes. "Madeleine, how many fingers am I holding up?" "Count your toes!" Woops, we are missing some.
When Dr. S told us that many children with FH have missing toes I was horrified. Such a silly thing to be horrified about! I remember my friends, Megan and Serena, who worked in a hospital telling me about a man who had only four toes. I thought about how my child would be the one that the nurses talked about. How kids would notice she only had four toes (or three) and make fun of her in her little sandals.
When Madeleine was born with five toes I saw it as a victory. Ha, you doctors! I made a child with all ten toes! Her foot is perfect! FH, my ass.
We amputated. We took off her perfect five toed foot. I never, well almost never, regret this. I see my daughter walking around, I see her climbing stairs, I see her squatting and standing back up, bending over, lifting her leg and I never regret taking off her foot.
When I am rocking her to sleep in the middle of the night, which happens more than I'd like to admit, I am reminded of that perfect little foot. Sometimes I am surprised that that her foot is gone. Crazy. In the middle of the night in my sleepy haze I will see that short leg sans foot and for a quick moment I will be surprised. I will wonder where that foot is. I will be horrified. And then I remember and still there is little regret.
I miss it though.
Wednesday, December 5, 2007
Calling our blogging friends...
Since I have just added a link list to our blog I want to invite you to be one of our links. If you are our friend and you have a blog (you know who you are--- wink wink) let me know if you want me to link you to us. I don't want to do it without your permission.
Thanks friends!
Thanks friends!
Bah Humbug?
As Max and Madeleine were busy being elves Daddy turned into Scrooge!
http://www.scroogeyourself.com/?id=1180390641
http://www.elfyourself.com/?id=1180705079
http://www.scroogeyourself.com/?id=1180390641
http://www.elfyourself.com/?id=1180705079
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