Saturday, November 26, 2011

What is Cerebral Palsy

I stumbled upon a fantastic website FILLED with information about Cerebral Palsy while I was searching and I wanted to get the important {to me} points all on one page that I could see them.  Whenever I become involved in something, be it homeschooling, scrapbooking, photography or now, CP, I tend to become passionate about it and try to learn as much as I can about it.  Right now, my fingers are busy clicking on site after site, to learn whatever I can about my daughter.  The following information is taken from that site.

What is Cerebral Palsy?

- While cerebral palsy is a blanket term commonly referred to as CP and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing before birth, during birth, or immediately after birth.
- Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oromotor functioning.
- Current research suggests the majority of cerebral palsy cases result from abnormal brain development or brain injury prior to birth or during labor and delivery.
- An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement disorder, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all.
- Cerebral palsy affects muscles and a person’s ability to control them. Muscles can contract too much, too little, or all at the same time. Limbs can be stiff and forced into painful, awkward positions. Fluctuating muscle contractions can make limbs tremble, shake, or writhe.
- Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects.
- Other complications, such as intellectual impairment, seizures, and vision or hearing impairment also commonly accompany cerebral palsy.

Cerebral palsy is non-life-threatening: With the exception of children born with a severe case, cerebral palsy is considered to be a non-life-threatening condition. Most children with cerebral palsy are expected to live well into adulthood.
Cerebral palsy is incurable: Cerebral palsy is damage to the brain that cannot currently be fixed. Treatment and therapy help manage effects on the body.
Cerebral palsy is non-progressive: The brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain.
Cerebral palsy is permanent: The injury and damage to the brain is permanent. The brain does not heal as other parts of the body might. Because of this, the cerebral palsy itself will not change for better or worse during a person’s lifetime. On the other hand, associative conditions may improve or worsen over time.
Cerebral palsy is not contagious; it is not communicable: In the majority of cases, cerebral palsy is caused by damage to the developing brain. Brain damage is not spread through human contact. However, a person can intentionally or unintentionally increase the likelihood a child will develop cerebral palsy through abuse, accidents, medical malpractice, negligence, or the spread of a bacterial or viral infection.
Cerebral palsy is manageable: The impairment caused by cerebral palsy is manageable. In other words, treatment, therapy, surgery, medications and assistive technology can help maximize independence, reduce barriers, increase inclusion and thus lead to an enhanced quality-of-life.
Cerebral palsy is chronic: The effects of cerebral palsy are long-term, not temporary. An individual diagnosed with cerebral palsy will have the condition for their entire life.

**All information on this post was taken directly from MY CHILD.  I do not claim any part of this is as my own** 

Thursday, November 24, 2011

The Results Are In

Have you ever had a moment where you feel like your world is about to come crashing down on you?  Today, Doug and I received some news about Sarah that has put us into a bit of a state of shock. 

We were given the results of the MRI.  I think I went in with the hope that we'd be told that there was nothing going on and to have a nice day.  That unfortunately was not the case.  

Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. 

They also found that there is "periventricular white matter" , consistent with "periventricular gliosis", WHICH as I understand, is the cause of her balance issues. 

All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy.   

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.
(Information taken from this SITE)

Sarah will continue to progress at her own speed.  She will not regress nor will she reach a point where she stops learning.  She will for now continue to be behind her peers physically and developmentally.  She may never catch up but she will ultimately reach her full potential, whatever that may be.

I feel raw at the moment.  If someone were to ask how I am doing, the answer would be "not great".  I managed to drive home in a state of disbelief, shock and even fear.  What does the future hold for us?  What am I going to do with this plethora of information?   I feel sad, deflated and broken.  My heart is aching so bad right now.

Tuesday, November 22, 2011

Genetics Day

Yesterday brought us to the second major test that we've been waiting for.  The one that was delayed an extra month.  Overall, the appointment went well.  It was in fact, Sarah's best in that there was very little crying.  Only one stint where they wanted to weigh her and she simply didn't like that. 
We answered a whole bunch of questions that the nurse asked us, everything from my pregnancy history, miscarriages, to Sarah's development and growth. 

The genetics doctor was very gentle mannered and "nice" for lack of a better word.  Initially, his appearance of a mad scientist who just came out of the lab, had me a little worried but my fears were eased by his soft tone and spirit.  He again, asked us the same questions that the nurse did and the same questions I answered on paper before the meeting but whatever. 

I'd like to say at this point, I am grateful for Wendy (again) who came along to this appointment.  She took notes for me.  I am such a visual person and if it wasn't for her, I'm not sure how much I'd remember.

The doctor has requested some blood work for Sarah.  *sad*  He is going to test for three things, two of which he's pretty sure won't be the case.  They are common abnormalities and Sarah displays one or two symptoms of each but not enough to be 100% sure.  The third test will determine a possible chromosomal abnormality.  This will not tell us if her make-up is normal vs. not normal but rather it may possibly show an increase in one chromosome or a lack of another.  That could explain *maybe* why the delays are such, why she doesn't have much hair, the balance, lack of potty training... I don't exactly know.  We were warned that the first two tests Fragile X and Rhetts will take three months to get answers from and the chromosomal test will be nine months.  The doctor can't see any pattern in Sarah to confidently decide on a syndrome but is suspicious of some chromosomal issue.  One comment that he said that caught me off guard was that Sarah doesn't look like Doug or I.  I personally don't think any of my kids *look* like me but I was a little put out.  I have heard from many people who know us that Sarah DOES look like Doug, and even though the doctor is a professional, I'd rather take the opinions of my friends instead. 

So, all in all, the afternoon went well.  I finished it off with a cup of tea with my sister who had kept my older kids for the afternoon and then arrived home to the aroma of a roast in the slow cooker.  All I had to do was pull the meat apart and we ate.  I have to say, that was probably my best decision ever.  What a nice way to end the day! 

Thank you for praying my friends.  I appreciate you all. 

Thursday, November 17, 2011

MRI day

Well, the day dawned bright and early for me after a long restless night.  Did I sleep?  Yes.  Did I sleep well?  No.  Lots of tossing and turning, thinking and spending long stretches praying and crying.
As I wrote this first part, Sarah was blessedly still sleeping.  She did wake up to nurse at 5:30 which is what I hoped would happen as our cutoff time was 6:00.  At least I knew that she had a little bit of nourishment in her little tummy.

As it turned out, our morning greeted us with the first snowstorm of this winter season.  Great.  The drive to the University wasn't all that bad... a little slippery and blustery but Doug's a good, confident driver.  When we arrived at the hospital, we asked for directions to where we should be and they sent us down a long hallway, turn right... whatever.  We go to admit her and are told we need to be at the pediatric MRI area.  Ok.  Off we go, down the elevator, more hallways and turns.  We arrive at the unit and are informed that we actually DID need to be where we were in the first place.  I was doing alright but could feel the push of a cry-fest approaching.  For the benefit of my daughter, I swallowed it down and head back the the original unit we were at.  Again, we are told we are in the wrong place and in fact need to be in, a totally different area of this GIGANTIC hospital.  My local friends and family know and understand how large and complicated the UofA is.  I'm feeling slightly lost, frustrated and confused.  A lovely older nurse guided us to the general vicinity of where we were to be.  Once we asked another person, she also took us straight to the correct MRI unit.  This took 30 minutes.  Thankful that I'm pretty strict about arriving early.

Once we signed in, a nurse quickly administered some EMLA cream to Sarah's tiny hands.  My daughter was less than impressed and tried to insist we take it off.  About half an hour later, they took her vitals, I put cute little hospital jammies on her and knew that the time was coming.  Sure enough, it was minutes later that they called me to the back, ready to anesthetize her.  Because she was crying, Sarah's veins were nice and big (relatively speaking) for them to put the IV in.  In a matter of a minute, she went from screaming and fighting to peacefully limp in my arms.  I held it together.  I did not cry.  In the waiting room was Doug and my sister in law Melanie.  It was so nice to have someone to talk to and pass the time by.  I didn't want to leave the area because I insisted on staying close to Sarah. 

It was only 25 minutes later when they told me she was awake.  All I could hear was her tiny little voice saying "I nee' mom."  I picked up my limp little girl and held her close.  She was in my arms again.  We waited the 20 minutes in the recovery room and were sent home.  Sarah came out of the anesthesia wonderfully.  We even stopped for a quick lunch on our way out and she has been chatty and happy all afternoon. 

Notes I'd like to end this post with:

~ I am thankful for the nurses who are so passionate about their job.  I felt like I mattered to them and that Sarah was just as important and special as the next kid.
~ I am glad that I like to be early. 
~ I am blessed to have a mother in law who will lovingly watch my children while I am busy.
~ I am thankful that Doug's job allows him to be flexible.  I couldn't have done today without him.
~ I have a wonderful aunt who offered to make supper for us tonight.
~ I'm grateful for all my friends who held me in prayer today.  I believe that the fact that I didn't cry all morning is because of their prayers.  Thank you.

Friday, November 4, 2011

It Happened to Us

A miracle that is.  I think for the most part, we often think miracles happen to other people but never us.  I have an inspiring story to share.

For quite a few years, Doug has been fighting vertigo.  In his words, he described it as laying on a record player and being unable to get off.  The past 2-3 years for him have been much harder with needing medication to control it and missing up to five or six days of work a month.  If was a really bad spell, it would keep him in bed for a day or more.

On the weekend of October 1, Doug attended the annual Elder's meeting at Camp Nakamun. As was anticipated, Doug began to feel the onset of a dizzy spell come so he went to his room to take a pill.  As he said to me "we believe in the power of medicine and the power of miracles".  When he arrived back at the session, one of the elders noted that he wasn't feeling good. Doug simply shrugged it off and replied that he'd be fine in a bit.  Suddenly, Henry announced that they needed to pray for Doug.  Pastor David (who was speaking at the time) asked if he could at least finish his presentation.  Henry stated again that they needed to pray for Doug.  When asked if Henry felt the power of the Spirit on him, Henry said he didn't know but they needed to pray.  With that, Henry began to pray for Doug.  While this was happening, Doug's ears began to get hot and Henry started to feel a bit dizzy.  Quite often when a person prays for healing, they will feel or experience some of the symptoms that the person they are praying for feels.

Doug's ears felt hot for most of the afternoon and it wasn't until around 3:00 when he noticed that he wasn't dizzy and yet, the medication should have worn off.

It has been just over a month since this has occurred and even with other issues (a back injury), Doug has not experienced one bout of dizziness.  He has woken up in the middle of the night to pick up one of our girls from a sleep over, he can get right out of bed with out stumbling and he can go from a sitting position to standing with no feeling of head rush.

He has been healed of his vertigo.  We praise God for this miracle even in the times of frustration with a very painful back.  God is GOOD!

Thursday, November 3, 2011

Connections Playgroup Part II

I had a visit this morning from Wendy to discuss some of the findings of Tuesday's session.  One of the suggestions was to get a referral to the Glenrose in the Physical Medicine department.  The OT was concerned about how much Sarah drags her toes when she walks (her shoes are proof of this).  The Phys Med area would focus on her walk, her gait and her gross motor skills.  They would then work with us on physical and occupational therapy for Sarah.  They also would be able to suggest {again} that we have the assessment done and by this point, we will have already had a foot in the door, so to speak.

We are also going to investigate other programs in our area that might be willing to work with us at home.  Wendy warned me that the group is going to try to tell me that Sarah needs to be in a program and that I can just set my heels in deep and say no.  I think that makes me sad.  I'm sad that the professionals don't think that I am able to do this.  As Sarah's mom, I do not feel that a preschool/program/structured system is the right road for her.  {If you read this and disagree, please be nice and don't voice your opinion yet} I firmly believe that the best learning takes place in her home with me, her dad and her siblings.  Her grandparents, aunts and uncles are all very involved in her life and together, I am determined we can make it work.
Wendy brought over a handmade matching game for Sarah.

There were four pictures of Curious George on a piece of paper.
Then she brought out four cut outs of the same pictures.  
When the *game* was first brought out, Sarah just whispered in awe, "George, mom."  It was so sweet how her favorite monkey happened to find his way into Wendy's bag.

For now though, we simply wait.  Wait until more testing.  Wait until we hear from other services.  Wait until the full report from this assessment comes.  I'm getting good at waiting.  I just don't like it.

Tuesday, November 1, 2011

Connections Playgroup Part I

The day started bright and early as we had to leave the house for 8:00 in order to arrive on time (adding in traffic and rush hour) for our 9:00 appointment.  This was a play based session where all Sarah had to do was play.  The room was neatly stationed with various toys all designed to encourage different areas of development.  Her favorite was the little slide... I'd bet she went on it close to 100 or more times.  Up and down, over and over.  After being observed by an Occupational Therapist, Psychologist, Nurse, Speech Therapist, and Speech Pathologist, we all got together (including our EI counselor) and had a 30 minute debriefing.  All the specialists spoke of what they saw in Sarah and we discussed what we were looking for in this particular session. 
I made it clear that none of my kids, Sarah included, have gone or will go to a preschool.  I felt it was important to make my position known early on.  I explained that I want to know where Sarah is at and what I can do in my home to help her learn, develop and reach her full potential.  They seemed open to that and they gave us some leads of groups that may or may not help.  But unless we look into them, we don't really know. 
It was decided also that until the medical tests are done (Genetics and the dreaded MRI), we can't really determine what more to do.  Hopefully those two tests together will be the climax to the last 5 months of attempting to figure out what's up with my little Miss. 
Our EI counselor is coming for {another} home visit on Thursday to discuss the details and findings of today's group assessment.

1 Peter 1: 6-7
So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while.  These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.  

As I read this, I'll admit that I find that being joyful can be hard.  I'm physically and emotionally tired and some of these trials are really exhausting.  God is faithful though and has promised to stand by me through all of this.  I'm working on laying my fears and pain at His feet and taking delight in my family.


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