Thursday, March 31, 2011
Its hard getting to know a new little person. Heck, its hard getting to know a new big person. Especially when this person doesn't speak your language, has delays, and depends on you for 100% of their care. Initially it was hard, getting to know each other while trying to give loving care around the clock. It did feel a bit like babysitting some days and it was frustrating trying to love and care for someone who had no idea HOW to be loved and cared for. She knew she wanted it and liked it, but it was overwhelming to her too.
I craved those special warm thoughts and memories I had with the boys. I wanted to smile thinking of a baby Alina, a sweet memory from our past together. But they weren't there. Most days it seems she's always been here, forever in our lives from her first breath, but I couldn't make up memories, we had to live them first
But then it happened.
I conjured up a warm fuzzy memory today. And it brought tears to my eyes.
Alina will turn 4yrs old on Saturday. I can hardly believe it... seems like only yesterday we were saying 'She's in EE and she just turned 3yrs old!' :) But thinking today of our first weeks together, remembering the first time she fell asleep on me in the rocking chair.... I went all warm and fuzzy. And the bond was sealed.
Tuesday, March 29, 2011
1. Walk with it just to the edge of the sidewalk, where the concrete driveway slopes down. Lift one leg and push with the other leg and then lift that one too. Ride walker down the hill.
2. Find ice and slush chunks in the driveway (road, sidewalk, etc). Make Rambo noises while driving your walker over them.
3. Play bumpers with your brother on his scooter coming down the same hill as #1. Watch brother fly through the air because scooter vs. walker.... walker wins.
4. Instead of turning it around when stuck, walk outside of it, give it a kick and crawl away.
5. Tip it on its side, use as a step to reach the banana muffins.
6. Use it to block same brother as #3 from getting said muffins himself.
7. Pretend you can't possibly walk another step while giggling at mom pushing the walker home while piggy backing the child.
8. And when you think nobody is looking and you are stuck, pick it up, turn around, then set it back down and keep walking.
Wednesday, March 23, 2011
He was screeching so loudly with excitement I was sure we'd have a pack of wild dogs on our front step. I couldn't help but laugh that it fell out while he was biting a lego.... ok. Those two bottom teeth have been loose for a couple months and finally one came out.
Now the other one is just hanging there..... with the way Alexander's teeth all fell out at once, I have a feeling we will need the tooth fairy's services on speed dial for the next few months. :)
Tuesday, March 22, 2011
Thursday, March 17, 2011
and that sweet faced changed everything. I began researching cerebral palsy and the types, how it affects kids, what causes it, and the prognosis. Suddenly that big scary term wasn't so big or scary. It was simply her. We knew we were looking at our daughter, simple as that.
Its takes alot of learning (and teaching others) to raise a child with a disability. But isn't every child worth it? Anyone who has read my blog for even a day can see how far Alina has come in such a short time. I have to remind myself daily she's only been here for 5 months! She's always been right there in my heart, but I didn't know it until we seen her sweet face. But now its like she's always been here, because in a way, she has.
Today at Target, Alina and I were just wasting time until Anthony got out of school. We didn't need anything and were in no rush so I didn't get a cart, just held her hand and we wandered around the store for 1/2 hour. I let her touch the toys and push buttons and look at all the shoes, even though none fit over her AFO's, she didn't care. We were in the game isle when an older lady walked up to us smiling. She had a purpose on her face and I smiled back. She told me that she had watched us walk in from the parking lot and said that she wish she could take a picture of us, walking slowly, talking on our way in and smiling at each other. She said it was beautiful, me holding her hand taking tiny steps with her and waiting patiently while she stepped up the curb and we made our way in the door. She told me she seen Alina was a special child right away, and it was obvious the love that we had for each other. And then she said something that I will never forget..... she said 'Its obvious that God made you just for her.' I smiled and told this sweet lady our story of adoption, and she had tears in her eyes. She told us she knew it, that God truly did make us for each other. She said 'God Bless you both' and walked away with a little wave.
So Barb, wherever you are, please know the huge impact you had on me today. After the ignorance of others earlier in the week, your taking the time to stop and share. I will never forget it.
Monday, March 14, 2011
This sweet girl waits because she has HIV. Did you know that HIV is easier to manage than diabetes? And you can learn more about HIV adoption at
Also if you view down a few posts, you will find a post with a fun video and some facts about HIV.
Please visit her page
HERE ON REECE'S RAINBOW
Even if you can't adopt, please consider donating to her grant fund, or the grant fund of any child waiting for a family.
She stole our hearts, and we pray she finds a home fast.
Wednesday, March 9, 2011
Why is Easton a special boy? Easton used to reside at the same baby house as Alina. In fact, they were in the same group. We had the pleasure of seeing him every day for a month. He's a beautiful boy, very active and fun. He loved to laugh and was very interactive. He and Alina were friends... when we came to get her for our visits they were often playing together.
Easton has recently been transferred out of the baby house. Fortunately he can still be adopted from his new orphanage.
Easton has Cerebral palsy like Alina. He's very high functioning and active.
So, in honor of Cerebral palsy Awareness month, I would like to invite all of you to go to
HIS PAGE ON REECE'S RAINBOW
and donate to his grant fund. Many times the only thing standing between a child and his family is the money. Adoption is not cheap, and with travel, the cost can seem overwhelming to a family who might otherwise jump at the chance to bring a child home.
Even better, if you go
and you can win some awesome prizes!
Easton desperately needs a family. He's such a sweet boy and knowing he was transferred right after we left just breaks my heart.
Tuesday, March 8, 2011
The most used and often most important is physical therapy. The purpose of physical therapy is to stretch and lengthen muscles, reduce spasticity, and teach proper movements in limbs. Occupational therapy is also used often with CP patients in conjunction with physical therapy.
Speech and language therapies are used to help patients with speech, and also sign language.
Exercise therapy, such as swimming, is also helpful to a CP patient. I know that Alina would live in the water if she could, so we enjoy swimming at the local community center. Swimming can make movements easier, more fluid without stress or tension.
Botox is also now used with CP. Botox is used to reduce spasticity in muscles.
Every person who has a cerebral palsy diagnosis will have a treatment and therapy plan specific to their needs, and it will grow and change over time. Some therapies may only be necessary for a short time, while others are long term or lifelong, and some may only be required at certain times. Currently Alina is enjoying physical therapy, and we swim on our own time. We hope soon that she can get some services with occupational therapy and speech therapy.
Sunday, March 6, 2011
In order to help them find families and raise some funds for their ransom, please visit this awesome giveaway! Every penny raised to towards their grant fund.
PLEASE CLICK HERE
to read all about the giveaway and donate to these three boys' funds.
Saturday, March 5, 2011
Mild Cerebral palsy- This can be so subtle that its undetectable until a child is old enough to walk well, and toe walks, turns one foot in and trips, has trouble lifting heavy objects with one hand, etc. Mild CP often causes just one or two minor issues that are often unseen to most.
Spastic Cerebral palsy- Spastic cerebral palsy is when the damage occurs in the cerebral cortex, or outer layer, of the brain. This is the most common type of CP, affecting up to 80% of those diagnosed with CP. Spasticity means the muscles are more tight/tense than they should be. Usually muscles work in pairs, when one half of the pair is in use, the other half of the pair relaxes. With spastic CP both pairs tighten together, causing spasticity.
Spastic Diplegia- spastic diplegia (the type of CP that Alina has) usually affects the legs of a patient more than the arms. Most people with spastic diplegia cerebral palsy eventually walk. A person with spastic diplegia may walk with a crouched gait, toe walk, or have bent knees. Most patients with spastic diplegia have a typical IQ. Strabismus affects almost 3/4 of spastic diplegia patients.
Ataxic- Ataxic CP is caused by damage to the cerebellum, or base of the brain. A person with Ataxic CP may walk with a wide gait, appear very unsteady and have problems with balance, and may have tremors when doing small tasks such as writing or picking up small objects. Ataxic CP usually affects all four limbs and trunk of the body. Low muscle tone, or hypotonia, are also symptoms of Ataxic CP.
Athetoid and Severe Athetoid- Athetoid CP causes slow involuntary muscle movements. Athetoid CP is caused by damage to the basal ganglia, or mid brain. It is also called Dyskenetic CP. Muscles will jump between too floppy and too tense, making movements random, jerky, small, big, or repetitive. Athetoid CP also affects speech.
Mixed- Roughly 10% of people diagnosed with CP have mixed cerebral palsy, meaning they have a diagnosis of 2 or more types of Cerebral palsy.
Hemiplegia- Injury to the left side of the brain will cause right side CP, while injury to the right side of the brain will cause left side CP. Childhood hemiplegia is common, with 1 in 1,000 cases. Hemiplegia affects only one side of the body, and can be congential (occuring before, during or shortly after birth) or aquired (occuring up to age 3). The most common cause is a stroke, and it affects each person differently.
Quadriplegia- Damage to the spinal cord is the cause of quadriplegia. Quadriplegia affects the ability to feel or move arms, legs, and other parts of the body. Spastic Quadriplegia is the most severe form of cerebral palsy.
Friday, March 4, 2011
So, out with it all ye lurkers! Ask a question (Q&A would be fun!), say hello, something!
Thursday, March 3, 2011
(these were taken with my cell phone so the quality is terrible!)
Cerebral palsy affects ¾ of a million Americans. Understanding CP can help with prevention and help ward off stigma's that often accompany the diagnosis.
Cerebral Palsy is not a disease and its not communicable. Cerebral palsy is caused when brain damage occurs in utero, during birth, or in infancy/early childhood. Brain damage can be caused by a stroke, lack of oxygen, or injury during birth. While there is no cure for cerebral palsy, it is not progressive as brain damage itself doesn't get worse. However as a person affected by CP ages, muscle stiffness/spasticity can get worse.Sometimes CP can be prevented. By getting proper medical care while pregnant you significantly lower the risks of CP. Other things that lower the risk are not smoking while pregnant, take care of your long term illnesses like diabetes and thyroid, be vaccinated for Rubella/German Measles (at least 4wks before becoming pregnant), and simple measures like staying healthy, eating right, seeing a doctor if you are spotting, bleeding, leaking fluids, or spiking a very high fever while pregnant. Be aware of infections like UTI's and vaginal infections, and avoid exposure to x-rays. Also all pregnant women considering pregnancy should take folic acid. If a woman has folic acid in her body at the time of pregnancy and during pregnancy, it will help prevent NTD (neural tube defects) like cerebral palsy.
But sometimes it can't be prevented. Babies can have a stroke in utero which can cause brain damage and cerebral palsy. Newborns, infants, and small children also can have a stroke which leads to a CP diagnosis. But if people are aware of what cerebral palsy truly is, getting diagnosed and treated early is the best. It is a lifelong diagnosis, but if its treated properly and continually, children can grow and thrive.
We do not yet know what happened to cause Alina's cerebral palsy. We do know she was born very early and that she was quite small at birth. She was said to have hydrocephalus at birth but doesn't have it now.... which is a big question to us because hydrocephalus doesn't just go away. Soon we will schedule an MRI so that we know where the brain damage is. Not only will an MRI give us a little more history as to why she has CP and where the damage is, but it will help us as she learns and grows, to help pinpoint where she may have difficulty learning or with memory.
There is so much to learn, and as we wander down this winding path the most important thing we learn is to see the joy in everyday things. Like watching Alina learn to sit, stand, and walk. Seeing the joy in her face when she does something so simple that we take for granted like getting a baby doll dressed by herself, or being able to put her own dishes in the sink after dinner. She has joy in almost everything she does. :)
Tuesday, March 1, 2011
But in her torso she has weak muscles, and that affects her balance. Most of the physical therapy we are doing right now is to strengthen her core since she's made huge progress with her legs and they are very strong, she uses them well. Mommy should be doing some of this core strengthening too. But my core isn't weak, its just flabby. :)
So in an effort to bring awareness, you can all learn along with me! I will be posting information that I have found helpful over the last year that I've been researching CP. Well, almost a year. There are so many kids who wait who are affected by Cerebral Palsy. It ranges from minor CP like Alina's to major CP that affects all the limbs. Cognitive abilities also range... it all depends on where the brain damage is. I hope that everyone can learn along with me. :)