Let me apologize first by saying that I'm having an emotional day. I will preface that with the ground breaking news that I'm having a 'visit' with my first menstrual period post partum. Yep, it has been two years since I have had a period.
I've taken to reading other people's blogs- I like blogs from other mothers. I can identify. Some people I know and others I do not. I have found blogs from mothers whose babies have cancer, autism, down's syndrome. Mothers of twins, quads and singletons. I have been reading a blog from a mother who lost her baby to cancer (insert tears here).
I have a friend who has a baby who is fighting for her young life. She has had four rounds of chemotherapy and it is not gone (more tears here). Her baby is the same age as Max and Madeleine. I have another friend whose baby is in remission from cancer; he is a few months older than M and M. Why do babies get cancer? How is this possible? I cannot begin to imagine what that must feel like for these mothers. How do they cope? How do they live? It is honestly my worst nightmare. The thought that I could lose my baby prematurely.
These thoughts bring me to the thankfulness I feel daily for my babies. How have I been so lucky to be given the role as mother to Max and Madeleine, the most brilliant people I know (insert tears of pride here). How am I so lucky to have healthy children. Yes, healthy. Madeleine is missing a fibula and a now, a foot. But cancer is not ravaging her body!
I watch my children sleep, eat, play, talk and even poop and I am amazed that they are full bodied people who have joined the human race. It is my job to nurture them, to teach them and to love them. Yet, they give so so much back to me.
Please pray for Brandon and for Gillian. What they have to go through is not fair. Please pray for their families who are finding strength in their love for their children.
Saturday, September 29, 2007
Tuesday, September 25, 2007
Insomnia
What happens when you are one years old and you cannot sleep? Of course you get to come and hang out with mommy and daddy and blow bubbles!
Madeleine is our night owl. She likes to sleep in and she likes to go to bed late. On this particular evening she simply wasn't tired at bed time. Yes, we reinforced this by letting her stay up and entertaining her with bubbles! Suckers!
Madeleine is our night owl. She likes to sleep in and she likes to go to bed late. On this particular evening she simply wasn't tired at bed time. Yes, we reinforced this by letting her stay up and entertaining her with bubbles! Suckers!
Sunday, September 23, 2007
school
Max and Madeleine have started school. They go twice a week to the EEU (Experimental Education Unit) and the University of Washington. They started last week on Tuesday and LOVED it. Thursday came and they couldn't wait to get out of the stroller to enjoy it once more. They are only there for an hour and a half but it sure feels more like four to me!
All the children did so well on their first days. It has to be due in part to the staff who is so positive and awesome! I feel so lucky to be part of the community there. Madeleine will be working with an Occupational Therapist there to help her in her goals for walking and getting use to the prosthesis.
Because it is an experimental school and a teaching place I feel comfortable posting pictures of the other children. We all signed forms saying that it was okay to have a kids in pictures.
Saturday, September 22, 2007
Madeleine walks with a push toy
Yesterday Madeleine started walking with a push toy. This is a huge accomplishment! She has had her prosthesis for 2 weeks and 2 days.
Helper Leg- up close and personal
The science of orthotics and prosthetics is amazing and unknown to most. Our prosthetist earns his pay over and over. I am charmed by Madeleine's helper leg that he hand crafted. I have come to see it affectionately as part of her. I think she is starting to see it as such too.
Lately I've noticed that it is not fitting as snug as it did two weeks ago. I called Greg he explained that this is normal. If you think of wearing a ring for a while it begins to mold to your finger, often leaving an impression and shrinking the tissue under it. The same concept applies to a prosthesis. We will see Greg on Monday to fix the fitting. I have a feeling that this will be a constant issue as Madeleine grows and changes.
The leg consists of a inner foam liner (seen at the top), and a hard outer part which fits over the foam liner. Greg made the foam liner and the hard outer leg. The foot is separate and ordered from an outside vendor.
Front view.
Close up of foot.
Lately I've noticed that it is not fitting as snug as it did two weeks ago. I called Greg he explained that this is normal. If you think of wearing a ring for a while it begins to mold to your finger, often leaving an impression and shrinking the tissue under it. The same concept applies to a prosthesis. We will see Greg on Monday to fix the fitting. I have a feeling that this will be a constant issue as Madeleine grows and changes.
The leg consists of a inner foam liner (seen at the top), and a hard outer part which fits over the foam liner. Greg made the foam liner and the hard outer leg. The foot is separate and ordered from an outside vendor.
Front view.
Close up of foot.
updates
I have so much to write, so many updates. I will try to get video and photos up soon. It has been over a week since my last post and things do move quickly in the Meyers' house!
First update....
Max and Madeleine had their 15 month appointment yesterday. Here are the stats...
Max:
31 inches (45th percentile)
22 pounds, 6 ounces (23rd percentile)
(he has lost a bit of weight since his 12 month appointment)
Madeleine:
31 inches (50th percentile)
21 pounds 12 ounces (45th percentile)
(this also might be slightly lower than her last weigh in as she doesn't have a foot any longer)
Twin Obsessions...
Max's new obsession is with books. He loves to read and constantly push books into my hands squeaking the word "eed eed eed". I really thought Madeleine would be the reader (because she is a girl? I don't know) but she loses interest in books quickly. Max could read for hours. He loves pointing to the pictures in the books and turning the pages. His current favorites: Goodnight Moon and Hand, Hands, Fingers, Thumb.
Madeleine's obsession is with shoes! She tries to put any shoe on her right foot. Funny that she never attempts to put one on her left leg. I caught her trying to get Michael's giant flip flop on her foot the other day! Unlike Max she doesn't say "shoe" she screams, a high pitched and urgent scream. Ah well, we will continue to work on language.
Words...
The twins don't actually say a lot these days. I'm on the look out for language delays because it is common in twins. Often twins will develop a "twin language" or talk for each other. Max is further along in speech than Madeleine. The pediatrician feels that this is due to Madeleine experiencing some 'trauma' that has delayed her language a bit. She said that she had a patient that was in a spica cast and she completely stopped talking for several months.
Max:
More (mah)
Milk (mih)
Dog
binky (bih)
read (eed)
juice (oose)
nah (haven't figure out what it means yet!)
Madeleine:
aaah! (for everything!)
binky (inky)
rah (sound a dog makes)
oose (juice)
They are also learning to sign as that is what is encouraged at school. (Experimental Education Unit= EEU)
Motor Development:
Max:
walks well
runs
walks backwards!
Falls often but picks himself up quickly!
Madeleine:
Cruises without helper leg
Cruises with helper leg
stoops and recovers
'Bear Walks' with and without help leg
Can use a push toy to walk with helper leg or walks holding onto your hands
Stands alone with helper leg
First update....
Max and Madeleine had their 15 month appointment yesterday. Here are the stats...
Max:
31 inches (45th percentile)
22 pounds, 6 ounces (23rd percentile)
(he has lost a bit of weight since his 12 month appointment)
Madeleine:
31 inches (50th percentile)
21 pounds 12 ounces (45th percentile)
(this also might be slightly lower than her last weigh in as she doesn't have a foot any longer)
Twin Obsessions...
Max's new obsession is with books. He loves to read and constantly push books into my hands squeaking the word "eed eed eed". I really thought Madeleine would be the reader (because she is a girl? I don't know) but she loses interest in books quickly. Max could read for hours. He loves pointing to the pictures in the books and turning the pages. His current favorites: Goodnight Moon and Hand, Hands, Fingers, Thumb.
Madeleine's obsession is with shoes! She tries to put any shoe on her right foot. Funny that she never attempts to put one on her left leg. I caught her trying to get Michael's giant flip flop on her foot the other day! Unlike Max she doesn't say "shoe" she screams, a high pitched and urgent scream. Ah well, we will continue to work on language.
Words...
The twins don't actually say a lot these days. I'm on the look out for language delays because it is common in twins. Often twins will develop a "twin language" or talk for each other. Max is further along in speech than Madeleine. The pediatrician feels that this is due to Madeleine experiencing some 'trauma' that has delayed her language a bit. She said that she had a patient that was in a spica cast and she completely stopped talking for several months.
Max:
More (mah)
Milk (mih)
Dog
binky (bih)
read (eed)
juice (oose)
nah (haven't figure out what it means yet!)
Madeleine:
aaah! (for everything!)
binky (inky)
rah (sound a dog makes)
oose (juice)
They are also learning to sign as that is what is encouraged at school. (Experimental Education Unit= EEU)
Motor Development:
Max:
walks well
runs
walks backwards!
Falls often but picks himself up quickly!
Madeleine:
Cruises without helper leg
Cruises with helper leg
stoops and recovers
'Bear Walks' with and without help leg
Can use a push toy to walk with helper leg or walks holding onto your hands
Stands alone with helper leg
Friday, September 14, 2007
Physical Therapy
Madeleine had her first PT appointment today. This entry is a hard one for me. I have so many mixed emotions that I cannot possibly be eloquent enough to put them down in an orderly fashion. Forgive me while I ramble.
Physical Therapy with a prosthesis is hard for a fourteen and a half month old baby. It was equivalent to a really hard workout with a super mean personal trainer. In essence, Madeleine worked her tail off today. She was forced to walk 'properly' while pushing a small walker.
Let me go back.... Madeleine has been doing remarkably well, in my humble motherly opinion. She usually doesn't scream when I pull out the helper leg. She stands unassisted for up to 30 seconds or so. She walks while holding onto fingers. She pulls herself to standing while wearing the leg. She gets herself into a sitting position while crawling or standing on the leg. However, when she walks she does so stiff legged. She refuses to bend her knee while wearing the prosthesis either when crawling or walking. because she doesn't bend her knee she swings her leg to the side. She doesn't like to put full weight unto the leg so she usually shifts her weight onto her right leg and keeps the prosthesis out to the side.
The physical therapist made her walk. She held onto her hips and forced her leg to bend. While this was fine for a bit Madeleine soon tired of it. You are thinking right now that she cried, right? No. She shrieked. She screamed. In an angry, "I've had enough" kind of way. She wasn't sad, she was pissed.
As a mother that got to me a bit. In fact, I'm sure it got to all that had to listen to it.
The PT told me what to do. She showed me how to 'help' her walk. How to correct her gait. However, I feel like she didn't acknowledge that I am not Madeleine's therapist, I am her mother. Not only that but I am a mother of twins, with two babies that need me. I simply do not have time or the stamina, quite frankly, to therapize Madeleine constantly.
Moreover, she told us she would see her in a month. A Month! In the meantime I'm suppose to be 'working' with her to get her to do all the things she is suppose to do, bend her knee, not swing her leg, stoop and recover.
I'm searching for a new PT. I do not have the resources (i.e., time and energy) to provide this for Madeleine while taking care of Max and her other needs. Furthermore, I am her mommy and I need to be there for her to cry on, to hold her, to play with her without her leg on. I cannot always be the one who is enforcing discomfort. Yes, I know she needs to practice. I know she needs to be corrected. But, she is a baby, a baby that has been through a lot in her short life.
I'd like for some acknowledgement from the medical profession that even though she is resillient she is still a baby. In fewer than fifteen months Madeleine has endured a Ceasarean Birth, and premature delivery, twelve days in the NICU and special care nursery, she has learned to breast feed, to eat solids, to crawl, to sit up, to pull herself to standing, to bite her brother, to steal his toys. She has had RSV Respiratory syncytial virus http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm, been hospitalized for it. And most recently, major surgery, a spica cast for 6 weeks, fitting for a prosthesis and now therapy.
Let's give the kid a break.
Physical Therapy with a prosthesis is hard for a fourteen and a half month old baby. It was equivalent to a really hard workout with a super mean personal trainer. In essence, Madeleine worked her tail off today. She was forced to walk 'properly' while pushing a small walker.
Let me go back.... Madeleine has been doing remarkably well, in my humble motherly opinion. She usually doesn't scream when I pull out the helper leg. She stands unassisted for up to 30 seconds or so. She walks while holding onto fingers. She pulls herself to standing while wearing the leg. She gets herself into a sitting position while crawling or standing on the leg. However, when she walks she does so stiff legged. She refuses to bend her knee while wearing the prosthesis either when crawling or walking. because she doesn't bend her knee she swings her leg to the side. She doesn't like to put full weight unto the leg so she usually shifts her weight onto her right leg and keeps the prosthesis out to the side.
The physical therapist made her walk. She held onto her hips and forced her leg to bend. While this was fine for a bit Madeleine soon tired of it. You are thinking right now that she cried, right? No. She shrieked. She screamed. In an angry, "I've had enough" kind of way. She wasn't sad, she was pissed.
As a mother that got to me a bit. In fact, I'm sure it got to all that had to listen to it.
The PT told me what to do. She showed me how to 'help' her walk. How to correct her gait. However, I feel like she didn't acknowledge that I am not Madeleine's therapist, I am her mother. Not only that but I am a mother of twins, with two babies that need me. I simply do not have time or the stamina, quite frankly, to therapize Madeleine constantly.
Moreover, she told us she would see her in a month. A Month! In the meantime I'm suppose to be 'working' with her to get her to do all the things she is suppose to do, bend her knee, not swing her leg, stoop and recover.
I'm searching for a new PT. I do not have the resources (i.e., time and energy) to provide this for Madeleine while taking care of Max and her other needs. Furthermore, I am her mommy and I need to be there for her to cry on, to hold her, to play with her without her leg on. I cannot always be the one who is enforcing discomfort. Yes, I know she needs to practice. I know she needs to be corrected. But, she is a baby, a baby that has been through a lot in her short life.
I'd like for some acknowledgement from the medical profession that even though she is resillient she is still a baby. In fewer than fifteen months Madeleine has endured a Ceasarean Birth, and premature delivery, twelve days in the NICU and special care nursery, she has learned to breast feed, to eat solids, to crawl, to sit up, to pull herself to standing, to bite her brother, to steal his toys. She has had RSV Respiratory syncytial virus http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm, been hospitalized for it. And most recently, major surgery, a spica cast for 6 weeks, fitting for a prosthesis and now therapy.
Let's give the kid a break.
Wednesday, September 12, 2007
Sunday, September 9, 2007
adjusting
No pictures today, I haven't downloaded them yet. I just wanted to write in and say that Madeleine is adjusting to the new leg. It is a process. She doesn't love it, she doesn't even like it but she will. Sometimes we can get her to forget she has it on. Michael and I are learning the fine art of baby distraction. We take the twins to the park, to the mall, to the restaurant, anywhere she will be able to forget about her predicament. If we are home she is stuck to me like glue as long as the helper leg is on. When we are out she may venture to explore with her brother.
It is a slow process. But one that she will not remember.
I went back to see Greg on Friday. He confirmed that I was putting the leg on right. He played with us and showed me how to encourage her to move, to sit, to crawl. He showed me what to look for in 'wrongness'. We have two different kinds of prosthesis socks right now, a one ply and a three ply. The leg volume will dictate which sock to you. It is all very complicated to the lay person.
It is a slow process. But one that she will not remember.
I went back to see Greg on Friday. He confirmed that I was putting the leg on right. He played with us and showed me how to encourage her to move, to sit, to crawl. He showed me what to look for in 'wrongness'. We have two different kinds of prosthesis socks right now, a one ply and a three ply. The leg volume will dictate which sock to you. It is all very complicated to the lay person.
Wednesday, September 5, 2007
helper leg
Madeleine had a terrible night last night. She slept little, had a fever, woke up cranky and tired. We had our appointment at 9 am. I knew it would be a disaster.
We were given her leg. They showed us how to put it on and what to look for but since Madeleine cried the entire time I remember little. It was an hour and a half of wailing and tears.
Despite the exhaustion and illness she did well. She wore her leg a bit today and stood on it and took a few steps while holding onto my hands.
However, getting it on is a whole other story. When I pull out the leg she cries. I put it near her so she could 'play' with it and get use to it but she pushed it away.
I have to say that I use to be really creeped out by prosthetic limbs. They looked so horrific, like severed body parts. I am now a changed Momma. I think her helper leg is beautiful. She will come to know it and love it and see it for what it is worth.
I'd like to share a picture with you. I was trying to find out more information about child amputees and came across this picture of a teenage girl. I am enfatuated by it. She is so pretty and has such a sense of confidence that I can only hope that Madeleine will seem so adjusted. Kids are amazing and given the right direction and teaching they can become anything! (woops, sounds like I should go back to teaching if I believe that! Mr. Elliott, are you still hiring?)
We were given her leg. They showed us how to put it on and what to look for but since Madeleine cried the entire time I remember little. It was an hour and a half of wailing and tears.
Despite the exhaustion and illness she did well. She wore her leg a bit today and stood on it and took a few steps while holding onto my hands.
However, getting it on is a whole other story. When I pull out the leg she cries. I put it near her so she could 'play' with it and get use to it but she pushed it away.
I have to say that I use to be really creeped out by prosthetic limbs. They looked so horrific, like severed body parts. I am now a changed Momma. I think her helper leg is beautiful. She will come to know it and love it and see it for what it is worth.
I'd like to share a picture with you. I was trying to find out more information about child amputees and came across this picture of a teenage girl. I am enfatuated by it. She is so pretty and has such a sense of confidence that I can only hope that Madeleine will seem so adjusted. Kids are amazing and given the right direction and teaching they can become anything! (woops, sounds like I should go back to teaching if I believe that! Mr. Elliott, are you still hiring?)
Monday, September 3, 2007
More Playing!
Here's another video of the twins playing. In this clip you get to see all the great thing about twins.... screaming and stealing toys. I took this video this morning so the kids are still in their PJs. I love it when at the end Madeleine tries to 'pour' out the rice from the bottle and Maxy gives the baby doll (yes, it is wearing a diaper!) a kiss.
Enjoy!
Oh, by the way, the toy corner is now organized! So our next videos and pictures won't look so chaotic!
Enjoy!
Oh, by the way, the toy corner is now organized! So our next videos and pictures won't look so chaotic!
Max Vocalizes
In this video Maxy is talking and playing independently. He has climbed on top of the Lego box. Also note my 'hand made rattle' which is brown rice sealed in a water bottle! :)
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