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**
Saturday, November 26, 2011
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.
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.
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.
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!
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.
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.
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.
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.
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.
Wednesday, October 19, 2011
Deflated.
I think that's the best way to describe how I feel today. The morning started with a home visit from our EI Counselor and in addition to her simply doing her job, she's become someone I trust, confide in and appreciate.
I agreed to do an informal screening this morning just to see where Sarah is at and to see what progress she has made in six months. It was exciting and encouraging to see the improvement in all areas of development. I'm one who likes to have things written down. I'm a visual person and so I need to see the changes on paper. So, in my organized fashion, I whipped up a little chart that compares where Sarah was at 35 months and where she is at 40 months.
The yellow highlights Sarah at 35 months and the blue highlights 40 months.
The yellow highlights Sarah at 35 months and the blue highlights 40 months.
- Area of DevelopmentSkill LevelAge DifferenceFine Motor27-28 months7-8 months
33-34 months6-7 monthsGross Motor25 months10 months
28-29 months11-12 monthsReceptive Language27-28 months7-8 months
33-34 months6-7 monthsExpressive Language27-28 months7-8 months
29-30 months10-11 monthsAuditory Memory & Recognition24-25 months10-11 months
28-29 months11-12 monthsVisual Memory & Recognition18-19 months16-17 months
23-24 months16-17 monthsSelf Help Skills31-32 months3-4 months
37-38 months2-3 monthsSocial Skills39-40 months4-5 months (ahead)
48-49 months8-9 months (ahead)
So yes, she IS improving but she also is still getting older and the way I see it is that she is no further ahead at this time. Although she isn't at the level of a 18-24 month old, she's still up to 1.5 years behind. It was when I looked at it this way, I felt my everything simply fall. My heart, my energy, my spirit. I guess it leaves me to wonder if she'll ever catch up. It is hard to send her to a play-based program at our church designed for two year old kids, knowing it is perfectly suited for her. I believe that she wouldn't thrive or succeed in the preschool program geared for 3-5 years old.
We had an appointment booked with a geneticist since August. Two months we waited. Three days before, we receive a phone call cancelling that appointment. Just. Like. That. After three phone calls back to them, I receive a new appointment... for November 21. Another month to wait. Four days before that one, we will be at her MRI and another week after that, we'll be following up for the MRI. I'm already looking forward for the month of November to be over.
I'm feeling incredibly discouraged today. As much as I know and believe I need to follow through with all of this for my daughter, my momma heart wants to just leave her be. Save her the pain of needles, doctors, nurses and tests. I wish these next words were mine but I credit my friend Jessica for saying what I haven't been able to put in words:
"There are no guarantees in life, and although we don't want our children to be in pain, we know that even this present suffering can be "worked out" for good as we love and train our children in the middle of their suffering."
I'm not sure when (or even if) Sarah will ever understand why we are doing this for {to} her. For now I will continue to advocate for her and do whatever I can to help her.
Philippians 4:6-7
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Isaiah 41:10
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
Friday, October 14, 2011
One of those weeks...
The weekend was spent as a family, with family... celebrating Thanksgiving together. On Monday, we didn't have much planned other than Doug figured he'd build one of the two gates for our new fence. Then, he put his back out. Cleaning out the shower. Nice. Now, for the most part, he seldom does anything part way and in fact, this back issue has put him out of commission ALL WEEK.
Tuesday:
The pediatrician appointment for Sarah that we had booked three months ago. I ended up having to drive myself (and Sarah) to the office alone. Now I'm not really afraid of driving in the city but I do find the infamous "Whyte Ave" to be a little intimidating. Thankfully I had a reliable GPS and good directions from Doug. As planned, Sarah's EI counselor met us there. She was going to be the one to push the doctor to get us in at the Glenrose. I forgot and she didn't know that the pediatrician is allergic to perfumes and other scents. That meant that she had to leave the room. So for a while, I felt very alone. I did muster the courage to ask him what we should do about the Glenrose and his suggestion was to wait until the completion of the rest of the tests.
When I got home, I drove Doug the chiropractor, Andrea to her music lesson, made supper and went to the bank so Joshua could open an account. I went to bed exhausted... I'm sure I was sleeping by 9:15.
Wednesday:
I stayed home all morning to be with the kids. They'd taken the entire long weekend off of schooling so we had a little catching up to do. I (again) drove Doug to another chiropractor appointment, drove Andrea to the auditions at church, threw a pizza in the oven and ended another day.
Thursday:
I headed into the city to meet my sister and aunt for a coffee date. I had a nice visit with them and it was good to connect. Sarah also loves the facility of Cafe O' Play and I know it's good for her motor skills. I made it home for lunch, a third chiropractor appointment, a facilitator home visit, lasgana in the oven, dealt with a little dog's seizure and eventually all four kids to bed.
Friday:
I woke up to realize I would (in addition to everything else), bring the garbages to the curb. Doug has another appointment this morning that I will drive him to, then to the city to sell some Kijiji items, make meals and try to squeeze in some school work.
*sigh* I'm just plain weary this week. Driving, serving, helping... I feel like my job description has multiplied greatly and I'm doing my best to fill in the role of mom, teacher, wife, nurse, taxi, chef... I'll be glad to have this week over.
Tuesday:
The pediatrician appointment for Sarah that we had booked three months ago. I ended up having to drive myself (and Sarah) to the office alone. Now I'm not really afraid of driving in the city but I do find the infamous "Whyte Ave" to be a little intimidating. Thankfully I had a reliable GPS and good directions from Doug. As planned, Sarah's EI counselor met us there. She was going to be the one to push the doctor to get us in at the Glenrose. I forgot and she didn't know that the pediatrician is allergic to perfumes and other scents. That meant that she had to leave the room. So for a while, I felt very alone. I did muster the courage to ask him what we should do about the Glenrose and his suggestion was to wait until the completion of the rest of the tests.
When I got home, I drove Doug the chiropractor, Andrea to her music lesson, made supper and went to the bank so Joshua could open an account. I went to bed exhausted... I'm sure I was sleeping by 9:15.
Wednesday:
I stayed home all morning to be with the kids. They'd taken the entire long weekend off of schooling so we had a little catching up to do. I (again) drove Doug to another chiropractor appointment, drove Andrea to the auditions at church, threw a pizza in the oven and ended another day.
Thursday:
I headed into the city to meet my sister and aunt for a coffee date. I had a nice visit with them and it was good to connect. Sarah also loves the facility of Cafe O' Play and I know it's good for her motor skills. I made it home for lunch, a third chiropractor appointment, a facilitator home visit, lasgana in the oven, dealt with a little dog's seizure and eventually all four kids to bed.
Friday:
I woke up to realize I would (in addition to everything else), bring the garbages to the curb. Doug has another appointment this morning that I will drive him to, then to the city to sell some Kijiji items, make meals and try to squeeze in some school work.
*sigh* I'm just plain weary this week. Driving, serving, helping... I feel like my job description has multiplied greatly and I'm doing my best to fill in the role of mom, teacher, wife, nurse, taxi, chef... I'll be glad to have this week over.
Tuesday, September 27, 2011
Another Update
We made the decision to apply for financial assistance from Family Support for Children with Disabilities. In order to receive this funding, we needed to get a referral letter from our pediatrician stating Sarah's needs and his concerns. This is what it says:
Sarah has developmental delays and Microcephaly. She will always need special education. She has documented delays in speech, fine motor and gross motor and visual memory as well as auditory recognition skills. Her condition is chronic and organic. Any help you can give this family is appreciated and appropriate.
Dr. M.
I knew these were the concerns but I guess seeing them so black and white is harsh and hurts a bit. Maybe inside, deep down, I had hoped that the letter wouldn't say anything like that and we wouldn't be able to apply...
Sarah has developmental delays and Microcephaly. She will always need special education. She has documented delays in speech, fine motor and gross motor and visual memory as well as auditory recognition skills. Her condition is chronic and organic. Any help you can give this family is appreciated and appropriate.
Dr. M.
I knew these were the concerns but I guess seeing them so black and white is harsh and hurts a bit. Maybe inside, deep down, I had hoped that the letter wouldn't say anything like that and we wouldn't be able to apply...
Monday, September 26, 2011
Thursday, September 22, 2011
Seven Random Facts
I received this idea from a young blogger this afternoon. Simply to write 7 things about myself that my readers may or may not know. So here you go...
1. I am passionate about my children. How and where they learn is so important to me. I love homeschooling them and teaching them about life.
2. I fell in love once and married that young man who captured my heart in grade 12. I am still crazy in love with my husband who is also my best friend. I look forward to growing old with him and raising our family together.
3. The past few months have taught me how to be my child's greatest advocate and do whatever I need to, ensuring her greatest successes. I've also learned how to lean on my Father in my saddest times and thank Him for the joys.
4. I hope to one day live on an acreage. I can see our homeschooling journey grow and bloom in the quiet of the country. I can see so much learning potential if we are out of the hustling, bustling city.
5. One of my dearest friends lives in Alabama. We don't talk often on the phone, but we do text and Facebook often. I can't wait to see her in person again.
6. I really don't like winter. Being cold makes me miserable.
7. I am a morning person. I love my coffee and the hour before the house rises up. Time to think, read and pray. I also use that time to prepare myself for the day to come and whatever it has in store for me.
There you have it. Feel free to join the blog train and leave a comment in the section below.
1. I am passionate about my children. How and where they learn is so important to me. I love homeschooling them and teaching them about life.
2. I fell in love once and married that young man who captured my heart in grade 12. I am still crazy in love with my husband who is also my best friend. I look forward to growing old with him and raising our family together.
3. The past few months have taught me how to be my child's greatest advocate and do whatever I need to, ensuring her greatest successes. I've also learned how to lean on my Father in my saddest times and thank Him for the joys.
4. I hope to one day live on an acreage. I can see our homeschooling journey grow and bloom in the quiet of the country. I can see so much learning potential if we are out of the hustling, bustling city.
5. One of my dearest friends lives in Alabama. We don't talk often on the phone, but we do text and Facebook often. I can't wait to see her in person again.
6. I really don't like winter. Being cold makes me miserable.
7. I am a morning person. I love my coffee and the hour before the house rises up. Time to think, read and pray. I also use that time to prepare myself for the day to come and whatever it has in store for me.
There you have it. Feel free to join the blog train and leave a comment in the section below.
Wednesday, September 21, 2011
Worries
Today I stumbled upon a blog that is written by a stay at home, homeschooling mom. In it she talks about finding joy amidst the worries that life can throw at us. Today, I am going to find joy and set aside my worries.
Joy in my children.
Joy in their schooling.
Joy in my home.
Joy in what I do.
Joy in how I do it.
Setting aside my worries about health, academics, my endless list of to-dos, the lack of time... today I will not worry about those things. Worry takes away joy.
1 Peter 5:7
Cast all your anxieties on him, because he cares for you.
Joy in my children.
Joy in their schooling.
Joy in my home.
Joy in what I do.
Joy in how I do it.
Setting aside my worries about health, academics, my endless list of to-dos, the lack of time... today I will not worry about those things. Worry takes away joy.
1 Peter 5:7
Cast all your anxieties on him, because he cares for you.
Monday, September 19, 2011
Sarah Update
It's been a while since I blogged specifically about Sarah so I thought I'd give an update.
Wendy continues to come every few weeks to play with Sarah. Her visits are both encouraging to me and at the same time, can bring me down a bit. She brings wonderful materials for Sarah to touch and explore which is helping Sarah improve her visual memory & recognition. Sarah's current favorite item is when Wendy brings a bag of dried beans to hide toys in. My sweet girl quickly takes off her socks and wiggles her feet in the bag. It is a wonderfully sensory activity and I know she enjoys it.
The last visit was one for me to vent a bit. I received a call from the Glenrose Hospital and essentially felt like the door was closed in my face. They told me they couldn't help me until or unless Sarah was in a "program" such as a preschool. I hung up feeling defeated. I can't and won't put my tiny 3 year old in a school type place. I don't believe it will help and I'm not open to that idea. I also asked Wendy to help me begin the process for FSCD funding. Family Support for Children with Disabilities. Funding that would help with childcare since I feel that the people I ask to babysit must be quite a bit older and somewhat experienced with her. People who are ultra patient and understand that she is not of 3 year old abilities. That, is hard for me. I think when I complete the application and (if) we are approved, reality will hit once again. I think the most encouraging words Wendy says to me are "It is really tough isn't it?" Yes. It is tough. I appreciate the fact that she doesn't fluff around it telling me that it will be ok and so on. She accepts my decision to keep Sarah home and I appreciate that too. She is my advocate and on my side. Admittedly, I also have times (usually after she leaves) that I wish I didn't need these visits.
I try hard not to be too down or frustrated but like everyone else, I have bad days. Days that I cry more, wish and pray that I didn't have to go through this.
"I am pressed but not crushed,
persecuted, but not abandoned,
struck down, but not destroyed.
I am blessed beyond the curse,
for His promise will endure
and His joy is going to be my strength
Though the sorrow may last for the night,
His joy comes with the morning."
~Delirious~
I'm doing my best to believe these words... really I am.
Wendy continues to come every few weeks to play with Sarah. Her visits are both encouraging to me and at the same time, can bring me down a bit. She brings wonderful materials for Sarah to touch and explore which is helping Sarah improve her visual memory & recognition. Sarah's current favorite item is when Wendy brings a bag of dried beans to hide toys in. My sweet girl quickly takes off her socks and wiggles her feet in the bag. It is a wonderfully sensory activity and I know she enjoys it.
The last visit was one for me to vent a bit. I received a call from the Glenrose Hospital and essentially felt like the door was closed in my face. They told me they couldn't help me until or unless Sarah was in a "program" such as a preschool. I hung up feeling defeated. I can't and won't put my tiny 3 year old in a school type place. I don't believe it will help and I'm not open to that idea. I also asked Wendy to help me begin the process for FSCD funding. Family Support for Children with Disabilities. Funding that would help with childcare since I feel that the people I ask to babysit must be quite a bit older and somewhat experienced with her. People who are ultra patient and understand that she is not of 3 year old abilities. That, is hard for me. I think when I complete the application and (if) we are approved, reality will hit once again. I think the most encouraging words Wendy says to me are "It is really tough isn't it?" Yes. It is tough. I appreciate the fact that she doesn't fluff around it telling me that it will be ok and so on. She accepts my decision to keep Sarah home and I appreciate that too. She is my advocate and on my side. Admittedly, I also have times (usually after she leaves) that I wish I didn't need these visits.
I try hard not to be too down or frustrated but like everyone else, I have bad days. Days that I cry more, wish and pray that I didn't have to go through this.
"I am pressed but not crushed,
persecuted, but not abandoned,
struck down, but not destroyed.
I am blessed beyond the curse,
for His promise will endure
and His joy is going to be my strength
Though the sorrow may last for the night,
His joy comes with the morning."
~Delirious~
I'm doing my best to believe these words... really I am.
Thursday, September 15, 2011
Random comment
by Arianna today. While driving around the city doing errands:
"My feet stink. Does anyone wanna smell them?"
Mmm... no honey. Put your shoes on and now we'll open the windows for a minute....
"My feet stink. Does anyone wanna smell them?"
Mmm... no honey. Put your shoes on and now we'll open the windows for a minute....
Sunday, September 11, 2011
A Bunny
For quite a while now, Andrea has been friends with a girl who lives on a farm. I can't recall how many times I'd pick Andrea up from Tia's with a plea to buy a bunny. I always gave a firm no. The last time (about 2 weeks ago), I was asked once again. After Doug and I talked about it alone and with Andrea, we agreed to let her get one. It was her money that bought the bunny, bag of food and some wood chips. Today was the day that Tia delivered the bunny. There was great anticipation in our house by everyone as the newest member of our family arrived. The hutch was set up, water bottle and food dish filled and Miss. Pixie was introduced to her new home.
Starting to build the hutch
The completed hutch
A very happy 11 year old!
About 2 pounds of supreme cuteness!!
Saturday, September 10, 2011
Has it been that long...
since Doug and I were in youth group at church? I don't recall my first youth event but last night, I dropped off my "baby" at his. It was an odd feeling of letting him go. I didn't get out of the van to say good bye. He didn't hug or kiss me either. Some bittersweet feelings as I watched my firstborn head off with his friends, ready to face this next chapter in his life.
I remember many youth events... in fact, it was a Friday night (a football game to be specific) that I told a friend of mine that I wanted to date Doug. Who knew that asking him to be my date for my grad night would eventually lead us down the aisle into our marriage of now 14 years!
Anyhow, it was just an odd-like sensation bringing Joshua to something that I so clearly remember about my own growing up years. Maybe it made me just feel older. More grown up. How silly is that! Am I ready for junior high... I hope these are great years for him. Years of friends, growing and changing.
Wow. Junior high....
I remember many youth events... in fact, it was a Friday night (a football game to be specific) that I told a friend of mine that I wanted to date Doug. Who knew that asking him to be my date for my grad night would eventually lead us down the aisle into our marriage of now 14 years!
Anyhow, it was just an odd-like sensation bringing Joshua to something that I so clearly remember about my own growing up years. Maybe it made me just feel older. More grown up. How silly is that! Am I ready for junior high... I hope these are great years for him. Years of friends, growing and changing.
Wow. Junior high....
Happy Birthday Andrea
Eleven years ago today, I went into the hospital ready to have our second baby. I had no idea at the time how this sweet little bundle of pink would change our lives forever. From a cute, round faced, pig-tail haired little girl to a tall, slim, mature young lady... the years have gone by so fast.
You are an amazing girl and I can see God doing amazing things in your life. You have a heart to tell people about Jesus and I know He has great plans for you.
You are wonderful with children... both your own younger sisters, and the kids you babysit. You have a natural gift to play with them and I can see much of me in you when I was that age.
You can sing. I love listening to you praise God through your voice.
You are smart. Teaching you is a joy and it's so exciting to have those "lightbulb" moments together as a concept becomes clear to you!
You are creative. I've seen you design Halloween costumes, dresses and other items. You are crafty, artistic and talented. I can't wait to see how you put all those to use as you grow up even more.
You are not a morning person. Your birthday present this morning will tell that! *smile*
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| Birthday 2004 |
Joshua is your closest friend and yet a greatest pest at the same time.
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| Birthday 2005 |
Arianna models you. She adores you and watches everything you do. She wants to be just like you!
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| Birthday 2006 |
Sarah adores you. You are her "go-to" person when I'm busy in the kitchen or when I need to run out for a bit. You are her hero!
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| Birthday 2007 - First motorcycle ride! |
Your dad and I love you. We love watching you grow into a young woman and we are amazed at how far you've come in your life. I pray that God protects you in these fragile years and that He continues to show me how to be the best mom to you.
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| Birthday 2008 |
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| Birthday 2009 |
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| Birthday 2010 Today is your day Andrea. I wish you the happiest of all birthdays and that this year is filled to overflowing with fun, happiness and blessings! |
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| 2011 |
Friday, September 2, 2011
Moving On
We moved into this house in November 2009. Around that time, a sweet 11 year old girl moved into a house across the street. Andrea and Cassie clicked like I've never seen before. Two girls who danced together, spent endless hours at one another's houses, one waited for the other to come home, shared clothes... you name it. They were the greatest of girlfriends. In June of 2010, Cassie's family decided to move back to their home in Ontario. To my young 10 year old, that might as well have been across the world, not just across the country. Andrea cried for a long time after that. The girls have stayed in touch by phone (yes, we've paid more than enough in long distance charges) but it's not the same.
Last night, after a conversation on the phone with Cassie, Andrea fell into a funk. She was gloomy and unhappy. Around 10:00 she came to me crying about how much she misses her friend. We had a long talk (why do these happen late at night?!) and I told Andrea that she needed to let go of the ultra-sad feelings she has about Cassie living so far away. I reminded her of the friends she has close by and although they will never BE Cassie, they are still wonderful girls to have around. I encouraged her to call other girls that she knows through our homeschooling lines and do what she can to play with them. I reminded her that Cassie will always have a special place in her heart and no one can replace that special friendship they had. I also had to encourage her that there ARE other kids who live much closer and can be super friends as well.
Thankfully, she went to bed happily thinking about her upcoming birthday and the plans she was creating to celebrate it.
Last night, after a conversation on the phone with Cassie, Andrea fell into a funk. She was gloomy and unhappy. Around 10:00 she came to me crying about how much she misses her friend. We had a long talk (why do these happen late at night?!) and I told Andrea that she needed to let go of the ultra-sad feelings she has about Cassie living so far away. I reminded her of the friends she has close by and although they will never BE Cassie, they are still wonderful girls to have around. I encouraged her to call other girls that she knows through our homeschooling lines and do what she can to play with them. I reminded her that Cassie will always have a special place in her heart and no one can replace that special friendship they had. I also had to encourage her that there ARE other kids who live much closer and can be super friends as well.
Thankfully, she went to bed happily thinking about her upcoming birthday and the plans she was creating to celebrate it.
Cassie & Andrea
Tuesday, August 30, 2011
Fun Monday
I took the kids on an impromptu trip to an outdoor pool today. What a great way to spend the day! We all came home sun-kissed and some of us a little pinker than others. I remembered to put sunscreen on everyone except Joshua. Poor guy has quite a sunburn.
One of the pool rules is that in order for the kids to play in the deep end and use the diving boards, they must swim a length of the pool without stopping. This, is not Joshua's forte. He tried {unsuccessfully} twice and I managed to encourage him to do it once more. Thankfully, he did it and was able to have the freedom that his sister and cousins did.
Arianna was happy to keep a life jacket on which meant I could just follow Sarah around. Arianna also surprised me by doing a flip off the diving board! Wow, she's sure gotten braver over the years!
It was (at times) exhausting to keep an eye on Sarah. She has no perception of danger or depth of water. Also, with her balance issues, I had to ensure I held her hand at all times. Thankfully, she was just as happy to spend lengths of time in her stroller eating snacks. That gave me a few minutes here and there to watch the older ones and let my guard down a bit.
Overall though, it was a fantastic day! When we got home, I somehow managed to send all three older kids to both sets of grandparents which meant I had the evening to myself! Oh, sweet alone time!
One of the pool rules is that in order for the kids to play in the deep end and use the diving boards, they must swim a length of the pool without stopping. This, is not Joshua's forte. He tried {unsuccessfully} twice and I managed to encourage him to do it once more. Thankfully, he did it and was able to have the freedom that his sister and cousins did.
Arianna was happy to keep a life jacket on which meant I could just follow Sarah around. Arianna also surprised me by doing a flip off the diving board! Wow, she's sure gotten braver over the years!
It was (at times) exhausting to keep an eye on Sarah. She has no perception of danger or depth of water. Also, with her balance issues, I had to ensure I held her hand at all times. Thankfully, she was just as happy to spend lengths of time in her stroller eating snacks. That gave me a few minutes here and there to watch the older ones and let my guard down a bit.
Overall though, it was a fantastic day! When we got home, I somehow managed to send all three older kids to both sets of grandparents which meant I had the evening to myself! Oh, sweet alone time!
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