Tuesday, December 20, 2011

Spinal Muscular Atrophy


SMA Fast Facts-

  • SMA is a progressive neuromuscular disease.
  • SMA is the number one genetic killer of children under two. (SMA Type 1)
  • One in 40 people unknowingly carry the gene that causes SMA.
  • It is a relatively common rare disorder, one in 6,000 babies are born with SMA.
  • There is usually no previous family history.
  • SMA affects people of all races and genders.
  • The National Institute of Health selected SMA as the disease closest to a treatment of nearly 600 neurological disorders.
  • Researchers believe that a treatment will be found within the next 5 years with the proper resources.

Symptoms of SMA-
is characterized by a progressive loss of muscle control and movement and increasing weakness due to the loss of motor neurons (nerves) in the spinal cord. Proximal muscles (muscles closest to the center of the body, such as those in the trunk and neck) are more severely affected than distal muscles (muscles furthest from the center of the body, such as those in the hands and feet). There is a wide range of severity of SMA; however, even in its moderate form, SMA can limit function and mobility. People with SMA either never acquire, or progressively lose, the ability to walk, stand, sit and eventually move. Although the disease varies in terms of age of onset and severity, most patients start to show symptoms during infancy or as toddlers. Respiratory illnesses may be more common for people living with SMA and can be severe. Good multidisciplinary care, including physical therapy, occupational therapy, respiratory therapy, and nutritional support, can improve quality and length of life for people with SMA. It is important to note that children with SMA undergo normal intellectual and emotional development and, with help and support, can participate in many childhood activities.

Types of SMA-

People with SMA are grouped into one of four categories, based on certain key motor function milestones and age of onset.

Type I, Acute Form of SMA (Werdnig-Hoffmann Disease): Patients typically exhibit limited movement and have difficulty holding their head straight, feeding, and swallowing. The progressive weakening of the muscles leads to respiratory infections, lung collapse and eventual death, usually by the age of two years. About 60% of patients with SMA are born with this form of the disease.

Type II, Intermediate Form of SMA: (Our daughter has Type 2) Symptoms usually emerge in patients between six and eighteen months, and the progression of symptoms varies greatly. Infants and children with this form of the disease are at one time able to sit unassisted, but do not walk independently. Kids with Type 2 have weak chest cavity muscles, though not as severe as Type 1. As with all types of SMA, the common cold can turn into a dangerous threat if it isn’t treated early and aggressively. Due to the varied progression of symptoms, life expectancy ranges from early childhood to adulthood. The majority of Type 2 patients live into adulthood. 

Type III and Type IV, Milder Forms of SMA with a later onset:
People with Type 3 and 4 often exhibit difficulty walking and have mild muscle weakness. These patients have a normal life expectancy.

Every person with SMA presents a unique case in terms of severity and rate of progression. As for our daughter, from what we can tell she is a strong Type 2 since she has never been able to walk but still has the ability to crawl, sit, and even stand with support for a few minutes. Sadly the degenerative nature of this disease means these abilities will diminish over time. Currently there is no cure or treatment for SMA. Caring for a person with SMA involves preventing complications of the disease. Since the muscles controlling breathing are affected, the most crucial aspect of care is to maintain respiratory health.

Since I am well aware that the information above is rather discouraging, I’ll leave you with this encouraging quote from an article I recently read from the Johns Hopkins Medicine magazine:

But now, with the help of better clinical care and new research, the potential has never been brighter for people with this disease. SMA patients are living longer and longer, and treatments that could radically improve their lives and outlooks hover tantalizingly on the horizon.

“SMA has gone from being one of the most hopeless of the neuromuscular diseases to one of the most hopeful,” Crawford says.

The information above is taken from these websites:

Additional information can be found here:

Monday, December 5, 2011

Good Morning Medley

I just heard this coming from Liya's bedroom as she is waking up:

I missed the first part of it so I'll just insert the original lyrics although I'm guessing she used her own creativity :) To the tune of "Are You Sleeping"

Are you sleeping? Are you sleeping?
Where's my mom? Where's my mom?
From there it went to a medley of London Bridge/Mary Had a Little Lamb.
Now This Little Light of Mine, etc...

We went in to get her up and find her missing the footie pj's she went to bed wearing and her diaper half-off. I guess she has to entertain herself somehow while I savor the last few moments of the quiet morning.

Thursday, December 1, 2011

Homestudy, Yes!

One huge thing can now be crossed off our adoption to do list. Finally, after a month long delay due to some paperwork we were initially told we didn't have to have, our homestudy is completed and now in the hands of our adoption agency! Yay!!! One major stressor (spell check tells me that is not a word) done...many more still to come. Our file can now move on to our agency's official China program and we will be assigned a China case manager.

While it looks like my timeline is out the window (those darn plans again!), at least we are moving in the right direction and one step closer to being united with "China" as Liya calls her. Since our homestudy is finished we can now send in our I800A (Application for determination of suitability to adopt a child from a convention country) to USCIS (United States Citizenship and Immigration Services). We will need to wait for them to give us an appointment to be fingerprinted and then wait for everything to be processed. It took two months for our last adoption so I am praying it will be as quick this time around if not quicker (I really should stop doing that to myself!). Once we get that approval we can send in our dossier (mountain of paperwork) to China! That will conclude the majority of our end of the "before we travel paperwork".

Sunday, November 27, 2011

I Thought

I thought it would be a while before we started our next adoption.

I thought our next child would be from Ethiopia.

I thought we would use our previous and familiar agency.

I thought we would adopt a child with a correctable or at least manageable special need like HIV.

I thought I was prepared to say yes to almost anything.

I thought an addition of another child would not significantly alter our comfortable lives.

I thought we would end up joining my sister’s family in Ethiopia someday.

I thought my child would have to fit in that box.

I know that our lives will never be the same.

I know that is a good thing.

I know that my life is not my own.

I know that our little girl is an incredible gift and we are amazingly blessed!

I know that I cannot wait to bring our daughter home and to give her the opportunity to become all that God has created her to be.

I know that God continually amazes me by giving hope at the right times, alleviating fears, and connecting us to people.

I know that even though my plans have all come crashing down, I can rejoice in the new direction our life has taken because God is writing this story and His plans are infinitely better than I could ever imagine.

Many are the plans in a man’s heart,
but it is the Lord’s purpose that prevails.
Proverbs 19:21

Monday, November 14, 2011

Poor Deprived Child

After visiting a friend and driving home-

Liya: I want to see Jenny!
Mama: She has to go home and feed her puppy.
Liya: Hey, I have an idea! We can get a puppy too! I want a puppy too!

Tuesday, November 8, 2011

Take a Closer Look

Click on the photo to get the full effect.

Wednesday, November 2, 2011

So Long Family Of Three

I've procrastinated writing this post for some time because I've been at a loss for words (and time).  Since I can't seem to get my thoughts together I've decided to let everybody in on the abbreviated, simple version of what we've been up to these last few months. As you have  probably guessed if you saw the post a few weeks ago, we have been busily working on our second adoption. Liya is excited to become a little sister! Big sister is five years old and from China. She is described as active, independent, smart, stubborn, and silly. Sounds quite a bit like a certain two year old we know!  She enjoys learning to play the piano and loves showing others how to play. 

We are adopting through China's special needs program. Our little girl was one child of almost 2000 children on China's waiting child list. I will write about our daughter's special need at a later date. We are so thankful to know that she is living in an amazing medical foster home that looks out for her needs.  

I'm sure everybody would love to see a photo and I am sorry to say you are just going to have to wait! Although it is not an official rule, we have been advised to wait on posting any public photos. The pictures we have seen of her are so sweet. She's always smiling for the camera and she has a dimple on her right cheek just like Liya! 

Wednesday, October 26, 2011

My Baby Is Two

We celebrated Liya's second birthday last week. I can't believe our baby is two!  We gave her a Dinosaur Train train set in the morning. She had fun with mommy during the day and then we met daddy in town for some birthday frozen yogurt.  She had her own cup for the first time and enjoyed every messy bite.

Birthday call from aunt Laura.

Watching daddy leave for work.

Fun with colored water.

Two hours later!
Yogurt with all the fixings: fruit and marshmallows.
More on the previous post coming soon!

Wednesday, October 12, 2011

Wednesday, September 28, 2011


Playing Liya's favorite game. Mamasaurus is coming!

Friday, September 23, 2011

Wednesday, August 10, 2011


Conversation from our walk this morning.

Me: I love you. Do you know that?
Liya: (shakes her head yes)
Me: Do you love me?
Liya: (shakes her head no)
Me: Well maybe someday you will.
Liya: I don't know. I think so. Maybe. I have teeth mama.

Going out the door for our walk she grabbed my keys and declared "I have to go to work."  She makes me laugh (sometimes).

Tuesday, August 9, 2011

My Little Singer

Singing is one of Liya's favorite things. She picks up songs very quickly and knows the words to quite a few songs. She was singing during lunch today so I told her if she would sing for the camera she could see herself on video. Surprisingly my tactic worked. I love that she is getting old enough to be reasoned with.

She is singing Dinosaur Train. Lately she is obsessed with dinosaurs.

Singing 1234.

ABCs with a little flair.


I was working on this post two months ago but still wanted to post it...

June 12, 2011
About a month ago (at 18 months) Liya started speaking in sentences. It seemed to come out of nowhere and then all of a sudden she started saying all kinds of things. Here are a few of my favorites.

I want to try it.
I want (insert anything and everything)
Stop! Don't do that!
No help you! or Help you mama/daddy! (translation- Don't help me! and Help me mama/daddy!)
Hold you. (Means hold me. I hear this phrase all day long.)
I can do that!
I need it!
I'll be right back.
No Piper! You settle down! (said to our parrot when he's off on a rant)
I'll get it.
Bye Daddy! I'll miss you!
You don't hit your mama!
Oh my goodness.
I'm gonna get you! Tickle tickle tickle! (while making tickling hand motions while chasing a garter snake)

Starting about the same time as speaking in sentences, Liya finally learned her colors.
She knows:

August 8, 2011
Liya is a constant chatter box. I don't think there is much she can't say. Every day she surprises me with the things she comes up with and comprehends.
For example, lately I've heard her say:
Hmmm, I think so.
I have an idea.
Mama's shirt is beautiful!
I'm probably the only one impressed by that, but I think that's pretty good for a 21 month old. Of course every parent likes to think his/her kid is a genius.

 One of her favorite things to say is still "hold me mama." This is most often said while I am doing something other than paying attention to her. She likes her presence acknowledged :) Another favorite phrase I hear constantly, "NO! STOP! Don't help!!! (or Don't do that!)" Half the time I have no idea what she wants me to stop doing. Toddlers are so much fun! Stay tuned for some videos.

Wednesday, June 29, 2011

I want cheese!

"I want cheese!" is what she exclaimed while taking my camera out of the bag earlier today. I took this rare opportunity and said go over there and do something for the camera.

Sunday, June 26, 2011

Thursday, June 16, 2011

Cornrow update

After five days I started redoing the cornrows by splitting them into two. Tiny cornrows took a lot longer to put in! I spread it out over 3 non-consecutive days and they took about 3.5 hours total. Now there are ten smaller cornrows. Most of them have been in a week now and I still might leave them in for a few more days, depending on how much the fuzz bothers me. It's not the two weeks I was hoping for, but it's been a nice break for her hair (a break from styling and from the toddler whose favorite activity is rubbing her head on everything).

This picture was taken after most of the braids had been in 4 or 5 days
already and before daddy made a Liya burrito in the comforter.
Previous cornrows for side by side comparison.

Wednesday, June 8, 2011

First Cornrows

A few days ago I got brave and finally attempted cornrows on Liya. I have been wanting to try for quite some time now so I decided it was time to just do it. I've previously done two-strand flat twists on her so I think that was a good base for learning how to cornrow. I only did 6 large short cornrows for my first attempt. They aren't perfect, but they look decent enough. Surprisingly I didn't find them all that difficult since they are similar to the flat twists that I've done before. The hardest part for me in any hairstyle is parting the hair. Ugh, I despise it!!! I spend way too much time on that (mostly due to wiggly toddler and partly perfectionist mama/thick curly hair). In all it took 1.5 Sesame Streets (hours). One half hour was spent trying to part the hair and then deciding it might be a good idea to make it simpler the first time around. Next time I hope to make the cornrows half this size so they will be less fuzzy and hopefully last longer. That might be wishful thinking for the toddler who loves to rub her head on everything.

This is what I get when I say smile for the camera. This face also makes an appearance multiple times throughout any given day.

Wednesday, May 25, 2011