Questions for Dr. Kifle

Dr. Kifle is my sleep guru. Seriously, if this guy doesn't make my life a whole lot better I don't know what I'll do. Poor guy, he has no idea that he is going to meet me tomorrow and that I am going to expect miracles.

Questions:

• Why does she wake up at almost exactly the same times every night?
• Is it habit? If so, how do I break it?
• Is Melatonin right for her and for me? (as I have now become so anxious that she will wake up I have a terrible time getting to sleep too)
• Is she ready to sleep in a twin bed?
• Could her rousing in the middle of the night be what is occasionally waking Max up too?
• Do night terrors start this young? Is it possible?
• What do I do?
• What should I expect for an average two year old?
• How many hours of sleep do kids' need at this age?
• What about naps? How long? Is there a 'perfect schedule'?
• Could food/juice affect night waking or difficulty falling asleep? (besides caffeine)
• What do I do?

Madeleine- Mad-uh-lenne not Mad-uh-line

There is a teacher at the kids' school who calls Madeleine "Madi" (okay, fine) or "Madeline" as in 'line' that rhymes with pine. The kicker is that she is the speech teacher! What's up? I get it, I named my kid a name that is common but I put a spin on the spelling. For those of you who don't know or didn't notice it is the French way of spelling Madeline.

Do you know of a child named "Mad-uh-line"? No, you know of a book that should be Madeleine but the English translation butchered it to being mispronounced.

Okay. I'm done. I just had to write about that.

Thank you.

Lesson Learned

It has taken me a while to figure out Madeleine's 'leggie dreams'. She often wakes up in the middle of the night and many times she is talking in her sleep. She will say something very benign like, 'mamop' (translated- lollipop) or 'Daddy funny, no no Daddy'. But often times she is crying about her leg. She will say it is broken, and ask to fix it, or she will cry, "leggie back on", which is basically asking me to put her prosthesis back on.

Most people who I have relayed these stories to sleuth out what is going on inside her toddler head quite easily but I'll admit, it has taken me longer. At first I thought she was insecure about having her leggie off or having it far away but now I know that she identifies her prosthesis as her leg. duh.

*The other night she had a terrible time getting to sleep. She didn't want to take her leg off and kept crying for me to put it back on. I tried to explain to her that kids cannot sleep with their leggies on, that Logan (the only other child she knows with a leggie) takes his off before bed too. I told her she could sleep with it in her crib but she kept trying to put it on herself and then would get frustrated and angry because she couldn't do it. It is quite complicated to put on. Finally I gave up and put her leg on the dresser and said no. It really broke my heart though because I think in Madeleine's mind no one else takes off their leg or foot so why does she?

A few days ago she lifted up her prosthetic foot and pointed to the toes and said, "Madeleine's toes".

My friend whose son also underwent an amputation got some great advice from a counselor who said to talk to the baby about what would happen to his foot. She has always explained to her son that the doctor would remove his foot so that it could function better. She told him this when he was a few weeks old and then when he was old enough to understand it. He has always had the privilege of knowing what happened.

When I have asked adopted children when they found out they were adopted most of them cannot remember. They say they always knew they were adopted.

Maybe because I didn't know which course of treatment we would do that I didn't talk to Madeleine about it. I'm not sure if I ever really explained what would happen to her little foot. Now Madeleine doesn't know that she use to have a foot. She knows that Dr. Mosca fixed her leggie so that she can wear her leggie. She knows that Greg does adjustments on it so that it works well.

Do I need to tell her what happened? Will she understand that when she is looking at pictures of herself as a baby and she has two feet that this is what she use to be? When do we talk about it? How do we bring it up?

The merit of a sleep journal

If I haven't already told you Madeleine is going to the sleep clinic at Children's Hospital on May 30th. Yes, it is that bad. Finally my pediatrician agreed that it would be worth a try. They sent me a log form to fill out, a sleep journal, if you will. I was afraid of it. I have tried to write sleep notes before but in my tired haze it never worked out. But this, well, this is for the doctor so there is no choice. It is homework.

I started recording about a week ago and let me tell you, that has been the best exercise. It is a very simple table with very quick responses so you cannot get too caught up in all the details but just give a quick one word response. They ask things like

• Describe any problems with your child's night sleep (and give you one square inch to do this)
• Bed time
• Estimate the time she fell asleep
• What is the clock time she got up for the day
• Total hours of sleep
• How did she feel when she woke up (one word only)
• How much nap
• Meds?
• Where did they fall asleep (bed, sofa etc.)
• caffeine products?

And that's it. After recording for 7 days I can see the average amount of time M sleeps at night (about 10 hours) how naps affect her (cannot sleep more than 2 hours). And that benadryl really doesn't do much.

I know that those of you with one baby are thinking that I should have known this already, but seriously, I have twins and half the time I cannot remember which child pooped that day. I get them mixed up, okay?

We'll see what the doctor says. I can honestly say that this past week has had her best and worst nights in it. On some occasions she has fallen asleep easily but then been up for 3 hours in the middle of the night (or two on two occasions) and then one night she was up every hour to hour and a half*. However, on Tuesday my little angel slept all night long for the first time in her very short life! 8 pm - 7 am, in her crib, without waking, without coming to my bed, without a peep. ahhh.

Painting

Usually I leave it to the EEU (Experimental Education Unit) where the kids go to school to do all the art projects. At school the paint, glitter, chalk, glue, playdough and whatever other medium the teachers are brave enough to attempt is contained. The children can wear smocks (but of course my kids won't wear one!), they sit at the table, there is butchar paper covering the table, and they have regular cleaners that can get glitter out of the carpet.


So for me, venturing out into the painting activity is a brave action. I have found, through trial and error, that watercolor comes out of everything better than crayons (you can look at my walls for proof), tempura isn't as bad but I feel much safer with watercolors.


The kids have really enjoyed painting. They like mixing the colors and cleaning the brush. Madeleine likes to drink the paint colored water too, much to my horror. I have found that when things are getting a little crazy I can say, "Let's Paint!" and that seems to settle everyone down for a few minutes.


Today I had to go to work. I had a new student on my calendar and had to get out of the house a bit early. Since this is a change of routine Michael quickly pulled out the paints and engaged the children easily and happily. Except.... this is what I found on the camera when I came home!!!

Mothers

I've been trying to think of something to write for Mother's Day for a very long time. The problem is, I cannot put into words how I feel about Mother's Day or how privileged I feel to be honored on this day.

How do you describe a mother? I could copy and paste one of the emails that has made its way to my inbox but that seems so Hallmark. First, let me say that I don't think you could possibly talk about what it is like to be a mother until you are one yourself. It is a different kind of existence. Yes, I know that we all have mothers and they mean a different thing to different people, depending on who you talk to. But to be a mother, to love and care for a child is something entirely different. No matter how you 'obtain' your child, through pregnancy or adoption, you know that you are a mother when you will lay your life down for that child without hesitation.

I can try to write about my own mother but I don't know if I can truly say what or who my mother is. I don't know if anyone could possibly really know my mom the way I do. My mom sacrificed much of her pleasures and life for my sister and I. She worked hard for us, to provide the best life that she could. She held high standards for us so that we knew we couldn't get by doing the minimum. She made special treats with us including homemade lollipops, graham cracker and frosting sandwiches, and yummy cookies. My mom did art projects with us. She has always been creative and artistic and never minded if my sister and I made a mess. She praised us and told us we were smart, beautiful, talented, the best. She let us be independent but we always knew she cared.

Today, my mom is still my biggest supporter. She has become my friend, a sounding board, a shoulder to cry on. She and I can talk for hours over coffee or on the telephone. She is a great lady. I hope the rest of the world can see my mother for how beautiful she is.

The problem is that we live very far away from each other and do not see one another as much as a mother and child should. One day it won't be like this but for now we make it work with telephone calls, airline flights and skype.

When my kids are freaking out, when there is way too much crying and fighting and toy stealing I remember that these are memories. Everything is temporary. Moments pass never to be relived. I want to remember the chaos with humor. I want to think back to the moments that I let the kids play with a giant bag of cotton balls and they stuck to the carpet with a smile. I want to remember chaotic dinners out with spilled juice and messy faces, it won't always be like that.
Ultimately I want my kids to have positive memories of their childhoods. I want them to think of the little things that mom did and know that it was all for them.

It is a privilege to be a mother, not everyone can do and not everyone can do it well. I will always cherish this job more than any other I will do.

Happy Mother's Day to all the mothers out there, both the ones that have their children in their arms, the ones whose children are gone from this life and the ones who have yet to hold their children.

clinic update

Apparently Dr. M was slightly worried that Madeleine would need another surgery to correct her knee. I did not know this. I thought she would have a procedure called an '8 plate' done to correct the valgusness of her knee when she is 5 or 6 years old. And, that still may need to take place.

Dr. M told me that he was concerned that he would see Madeleine and notice that her knee would be further 'knocked' and we would have to do another osteotomy, another spica cast, another recovery! ugh! Thank goodness we don't!

At Clinic Dr. M poked and prodded her little leggie and said that she was healed and her heal pad (the bottom of her leg) has held in place beautifully and that there doesn't seem to be any sensitivity or tenderness.

Greg and Peter (the other prosthetist) watched Madeleine run back and forth down the hall in order to see what I was seeing. A little bit of a hobble and a bit of a turned out knee on the prosthetic leg/knee. I misinterpreted this as needing an adjustment. You know what it was? Wait for it.....

**********Disclaimer***********

Have you ever put on a pair of crocs? I haven't. But Madeleine has and she loves them. She will not take them off. I mean, the kid sleeps in them during nap times. She wakes up in the morning saying, "cwocks, cwockeees, cwocks". She has an adorable pair of these mostly ugly shoes. They are light blue and have a butterfly 'jibbitz' on the top.

**************************************************************

Because Madeleine refuses to wear any other shoe she was wearing her crocs at her appointment. Greg noticed that she was swinging the prosthetic foot wide in order to clear the toes and the shoe is longer than the foot.

Frankly, I was worried and a bit embarrassed. What kind of mother am I? Putting my kid in shoes that made her walk funny? What if they don't let her wear them? What about the tantrums? She will be so sad?

But Childrens is Childrens and Greg is Greg and he goes for the easiest solution that still allows kids to have their freedom and fun. What did he do? You ask. He flipped the straps and Voila! She walks great now. She has her favorite shoes. She is a vision of fashion.

regeneration

Regeneration

I am usually very positive about our experiences with Madeleine's treatment. I'm so very proud of my daughter. She is beautiful. She is capable. She is smart and charming. She is caring and empathetic. She is sweet and kind. She is friendly. And she is really really cute.

I love her little leg. I love it because it is part of her. Because she is affectionate toward it. Because her little heal looks just as it did prior to surgery.

I wish she had a foot. I don't admit this readily because it is morbid and unnecessary. I want to have moved on and I guess in a sense I have. But in my heart of hearts I wish that my little girl did not have to go through this life with a different form than others.

Last night I was thinking how great it would be if Madeleine could regrow her fibula bone. Her leg would slowly become longer and her little foot would sprout out the end and be completely functional.

In nature some creatures can do this: worms, starfish, salamanders (see below). I'm sorry to my readers who have children with upcoming surgeries. I message to you: Your child will amaze you. They will inspire people everywhere. They will exceed your expectations. I know this because that is how my daughter is. However, I still wish she had her foot. sometimes.

Newts and Salamanders
These amphibians
can regenerate a missing tail, legs, even eyes. This remarkable ability is
particularly pronounced in the larval stage. For this reason, larval salamanders
are favorites for doing research on regeneration. For example, cutting the tail
off a larval salamander initiates the following sequence of events:
A layer
of epidermal cells grows over and covers the stump.
A mass of
undifferentiated cells — called the blastema — develops just beneath.
Muscle
and cartilage form in the regrowing tail.
The notochord
and spinal cord grow out into the regrowing tail.
After a few weeks, a new,
fully-functional and anatomically-correct tail is complete.
The MechanismFor
years, it has been unclear as to whether this regeneration depends on
a
population of pluripotent
stem cells that have resided in the animal body prepared for such an event
(as occurs in the hydra) or
the dedifferentiation of specialized cells, e.g.
muscle and cartilage cells, in the stump.
The answer appears to be both.
Stem cells in the spinal cord migrate into the regrowing tail and
differentiate into several cell types, including muscle and cartilage. Although
the stem cells are ectoderm,
they are able to develop into mesoderm.
Muscle cells in the stump migrate into the blastema while
reentering the cell
cycle to produce thousands of descendants;
dedifferentiate as they do
so; that is, they lose the characteristic proteins, etc. of muscle
cells.
Even though there is as yet no sign of a tail, its final pattern is
established during this process for if the blastema is removed and transplanted
elsewhere, it will continue the process of regenerating a tail.
Finally the
cells of the blastema differentiate into all the cell types — nerve, muscle,
cartilage, skin — used to build the regenerated tail.
Mammals
Don't we
wish that we had the same powers of regeneration that salamanders do: able to
regenerate a severed spinal cord or grow a new heart!
But unfortunately, we
cannot. We can regenerate some skin and a large amount of liver. But that's
about it.
Just why we are so limited is not known (but is the subject of
intense research). Much of the excitement of research on stem
cells is because of the hope that they may provide a means of regrowing
damaged or lost tissues or even organs.
Genetic Control of RegenerationA
number of genes have been found to implicated in regeneration. One of the most
potent of these is Wnt.
Injection of agents (e.g. antisensense
RNA molecules) that interfere with the Wnt/β-catenin
pathway
blocks limb regeneration in salamanders and
promotes head
formation in regenerating
planarians, while
injection of agents that enhance the Wnt/β-catenin
pathway
enable chicks (that, like mammals, are normally incapable of
regenerating limbs) to regenerate a wing;
cause a regenerating planarian to
form a tail where a head should go.

Clinic appointment

On Wednesday Madeleine has a clinic appointment at Children's Hospital. Clinic days are very special and make Childrens great. This is where families with children who have similar issues (in this case a 'limb difference') all have appointments on the same day. The whole team does rounds and the families have the chance to ask questions, meet the surgeon, physical therapist, occupational therapist, prosthetist etc. It is nice to have all bodies present at the same time.


But, the really best thing about clinic is meeting other families. Seriously, when you feel like your kid is the only one inflicted with this 'terrible' issue it is nice to see some other families and giving the problems some normalcy.

Our first clinic was when Madeleine was 5 months old. This is where we met Ava, a four or five year old beautiful little girl with blonde pig-tails. Ava also has fibular hemimelia and Ava walked into our room holding a purse and wearing a tutu-like skirt with her Nikes. I had a hard time talking to her because I had been crying so hard earlier and was still feeling very sad. It was on this day that Michael and I made our choice to amputate. Ava's mother explained to her that this little baby named Madeleine is going to have the same surgery as she did and would have a helper leg too. She explained to her that her leg and foot looked just like Madeleine's when she was a baby. Ava rubbed Madeleine's leg and whispered the sweetest "wow" I had ever heard.

Michael and I will always remember Ava and her mother. She has no idea how much she helped us during such a low time in our life.

We also met a little boy named Michael. He had lovely blonde curls and was interested in doing everything very very fast. We didn't talk with him too much but watched this child run, jump, toss the ball with Dr. Mosca, everything a five year old boy does.

We met my good friend Jenna at a function similar. Although Logan has a different situation than Madeleine they are more alike than different. Jenna and I have formed a lasting friendship she is the only other mother I know who deals with a child with an amputation. Logan is Madeleine's only friend who has a leggie like her. Special indeed. Check out our recent playdate here.

So now it is our turn. We are going to a clinic appointment. We will meet Dr. Mosca again for an exam. He will look at Madeleine's leg and tell us she is fine. He will assess the 'valgusness' of her knee and estimate our next surgery. We will see Greg and he will watch her walk. I will say hi to Cathy (the physical therapist) and Sharon (the occupational therapist). This is all important in Madeleine's care. But what I am most anticipating is meeting other families who have children in this situation. Maybe we can show them some normalcy. Maybe they will feel better when they see our beautiful and capable little girl. Boy, Children's is sure smart is creating 'clinic'. Let families help families since we are the experts, are we not?