On This Day in 2008

Facebook has this feature where it will show you previous posts and pictures that were shared. Some days I have none and others I have a few. And sometimes, on days like today, an exceptionally meaningful post will come up as a memory. Eight years ago today, Sarah saw a new pediatrician for a follow up regarding weight gain, or should I say, the lack of it. In it I had shared that she only gained three ounces in the previous 10 days but her head hadn't shown any changes. We were thankful for the weight gain, but it was still less than half of what it should have been. The lack of gain of her head size indicated stagnant brain growth and she was falling away from her curve. When I look back I wonder what, if anything could have been done sooner. We were trying to get as many calories into her as we could and in addition to me nursing, she was being supplemented with a very expensive, prescription only formula. And it still wasn't working as good as the doctor wanted. Since her head hadn't grown at all, it was at this time that her first MRI was booked and we knew that if she didn't put on a certain amount of weight by the next appointment, we'd be planning to stay at the hospital. I will write another post on what happened 10 days later.

Fast forward eight years...

This weekend is Thanksgiving in Canada and I have so much to be thankful for. It began to snow and Sarah loves the snow. ❤️ She found herself some splash pants, mitts and a thick hoodie since we don't have a full snowsuit right now. First thing this morning she was dressed to be outside and play in the freshly fallen snow.  She tirelessly hauled that little sled up our hill and excitedly slid down it. 

Sarah has never been hospitalized for failure to thrive. We have been fortunate that she has always gained "just enough" to satisfy the doctors. There's nothing we can do to make her head grow though. In fact, the hat she is wearing in the pictures below is probably 3-4 years old since she just doesn't outgrow hats quickly.Over and over again. I stood by the window in amazement as I watched her happily play and thanked God for how far he has brought her physically and emotionally. And as for me... that's for another post too. ❤️

Happy Thanksgiving!

Microcephaly Day {2016}

Today is Microcephaly Awareness Day. This is the diagnosis that I feel affects Sarah the most, even more so than the Cerebral Palsy.

The Mayo Clinic defines microcephaly as:

We don't and likely never will know the cause of this condition in Sarah. Because we didn't see her current pediatrician until she was three years old, his suspicion is that she suffered from oxygen deprivation at some point in my pregnancy with her. There was nothing I could have done to prevent it, it was just something that happened.

Sarah's head is significantly smaller than the heads of other eight year olds. Her's is actually below the standard deviations or average. A typical girl of her age will have a head around 51 cm in circumference, while Sarah's is 47.6 cm. This puts her at about a -3.4 standard deviation and it probably will never catch up. I'm pretty sure it is the microcephaly that is the cause of most, if not all of Sarah's delays.

We have no idea of how Sarah's development will progress over the years. We have made the decision to not put her in a school and therefore I am her primary teacher and therapist. I find all my resources online and do my best to help her learn and understand the world around her. This week, she managed to trace a few letters in her workbook. The letters have little to no value to her but she was able to follow my instructions, hold the marker quite well and focused on tracing the letters. I'd guess in this area, she's about 3.5 years old developmentally. She loves things that I'm sure most 8 year olds are past. Curious George, Paw Patrol and toys geared for young preschoolers. But boy does she love life! Every morning I'm greeted with a cheerful "good morning Mom!" and for the most part, the days are filled with her endless chatter about all the things that are important to her. She loves her family and finds it important to know where everyone is at any given point. It is best when we are all home and she can keep track of us all. She is a delight to everyone we meet and I am so thankful that God placed her in our family to show us how to love in a totally new and wonderful way!

Pediatrician Appointment {09.13.16}

September brings with it a new school year, schedules and a return to routine. For us, it's also the month that Sarah has her 6 month follow up with her pediatrician. The good news is that Sarah grew an inch since the last time we were in. I can tell because her pants are all seemingly too short for her now. The not so good news is that she hasn't gained any weight. That means at 42 pounds, she is in about the first percentile and has (for now) fallen off her curve. She's still in the 3rd percentile for her height but her doctor says she's too skinny. For now, she needs to be eating pretty much anything we can get into her and we go for another weight check in December.

On another positive note, we did start school again and we began with a pre-printing workbook. She's able to follow the lines of a few letters and match them up with the alphabet pictures we have on the wall. They still have no value to her but she enjoys her school time with me. She will last between 5 and 7 minutes at the table and then wearily says, "I'm so tired, can I be done now?" She still does most of her learning through toys, blocks, her dolls & stuffed animals and sensory bins that I make up for her. Her iPad also has quite a few educational type apps where she traces letters and shapes while the app identifies them for her. I've noticed too, that she's starting to remember the words of stories and will fill in some words and sentences for me. She loves to pretend with us, tell goofy knock knock jokes and cuddle. One of her favorite games is to play that she's taken my nose (or anyone else's) and throws it away. She is keenly aware of my emotions and anytime I am anything other than happy, she is quite concerned and makes it her goal to cheer me up. Her impish little grin is irresistible and more often than not she makes me smile.

Eight Years Old!

Sarah turned EIGHT last month! Oh how the years have flown by and I can't believe how far she's come. I decided to do a bit of a review on her stages and development, if not for my reader's sake, then for my own.

June 22, 2008: Sarah Anne was born. Nine days after my due date she finally made her appearance coming in at 6 pounds, 1 ounce and 17 inches tall. When I first held her, I recall thinking that I had never seen or held a baby so tiny. Doug had to go out and buy a preemie sleeper for her to come home in. One of the things I clearly remember about driving home from the hospital was that she cried the whole way. To this day, she still doesn't like being in her carseat and often pushes or pumps her legs while driving.

August 27, 2008: Sarah had gained her first pound by two months old. Yes, it was at this point that we took her to a specialist regarding her extremely slow weight gain after my midwife suggest we get Sarah checked out.

September 5, 2008: Sarah had a cardiologist appointment this afternoon and were told that she would be given an EKG (electrocardiogram) and an echocardiogram (ultrasound of the heart). Since the patient has to be relatively still for these tests, Sarah was restrained by Doug, myself and one nurse. Yes, it took three adults to keep a spirited 2.5 month old still. We were told that if she didn't settle for the echo, she would have to be sedated and my aching mother's prayer was answered and she took her soother and relaxed for most of it. 

October 10, 2008: (Taken from a previous blog post) Doug and I have just arrived home after Sarah's appointment at the pediatrician (Dr. Lee). It was not a positive event for us. First the stats: Sarah gained 3 oz and 1/2" in height over the last 10 days. Unfortunately her head circumference stayed the same.

We are thankful for the weight gain, but it is still less than half of what it should be. The height increase is good, and put her back on the right track there - but the lack of gain on hat size indicates 

stagnant brain growth. 

We are needing to do more blood work for genetic testing as well as get an appointment for an MRI to determine that her brain and skull are growing as they should. (the MRI will require general anesthetic for Sarah) 

In light of the growth that has been seen, the pediatrician did not think it necessary to admit Sarah to hospital at this point, though that is a very real possibility if these trends don't change. Our next 

appointment with Dr. Lee is on October 22nd and we were given the impression that we should come prepared to hear that Sarah will be put into the first available bed. This is obviously NOT the route we want to travel!

October 22, 2008: (Another blog post) Good evening. Well it was another eventful day at the U of A hospital for us. Certainly a more positive outcome than the last time. 

So, first the stats: Sarah gained 13 ounces bringing her to 8 pounds, 4.2 ounces and yes, I'll count in the .2! She also put on an additional 1/4 inch in length. Her head circumference went up 1/2 cm which is ok but not great yet. She's still falling away from the curve on that end. That being said, we don't need to see the doctor for another 6 weeks!!

Her weight gain is certainly an answer to prayer and we are thankful for every one of them. As for her head... her pediatrician has requested an MRI just to make sure her brain is developing normally even though it is small. This is procedure is probably the most stressful for me now. All I know is that she will need to be sedated and I won't be able to feed her up to four hours before. Then there is all the pre-op work to do as far as getting the IV started and such. The MRI itself is about 30 minutes and then there will be her wake up time before I will be able to see and feed her.

The MRI at this time showed nothing significant.

December 2008: At six months, Sarah was 11 pounds, 3 ounces

May 2009: When she was 11 months old, she began to crawl

June 22, 2009:  At one year old she was 13 pounds and 11 ounces.

December 2009: When eighteen months rolled around she was 16 pounds and started to walk on her own.

** When I think back to this moment, I wonder why I never saw any red flags. All my other kids walked at a normal time and so this was so late. Sarah was also SO very small. I'm sure she was still wearing 9-12 month clothes at her 2nd birthday.**

December 22, 2010: I remember writing in a previous blog post that she wouldn't go to kindergarten in diapers. It makes me smile to look back and think I had no idea what the next few years were going to hold for us. She was 22.5 pounds.

April 2011: Doug and I were beginning to wonder about Sarah's speech and after having it tested, found out that there was a lot more that we would be dealing with.

May 16, 2011: Oh the plethora of information that we received this morning.  There are quite a few issues where Sarah's development is concerned.  In most areas, she is at the age of a 24-25 month old.  In one area (visual recognition) she's at the level of an 18 month old and only in her social skills is she at the correct age.  So in all areas of development, she is significantly delayed.  

July 18, 2011: We had our first appointment with a new pediatrician who deals mainly with special needs kids. This is when our journey into an unknown future began...

September 27, 2011: The doctor's very first diagnosis, without even doing any testing was that Sarah has developmental delays and Microcephaly. Microcephaly means a smaller than average head due to a lack of brain growth. The doctor suspects that early on in my pregnancy, her brain was deprived of the necessary amount of oxygen and she suffered brain damage.  As a result, she will always need special education. She has documented delays in speech, fine and gross motor skill and visual memory. Her condition is chronic and organic. She will not get worse but there will probably come a point when she no longer developed cognitively - she'll most likely need someone to care for her for the rest of her life.

November 24, 2011: We were given the results of the MRI.  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.  

The next few years were a blur of tests, assessments, doctor appointments tears and prayers. I look back and am so thankful I had the clarity of mind to actually write about it. In fact, I wrote so much, that I can't even really write about it in this blog as it would take too long. 

Our latest very exciting development for Sarah is that she is diaper free. I had started to see signs of her being ready and her "carrot" was a camping trip that we take with our church each year. I told her she couldn't go camping in diapers and within a few days, she was completely done. There were times when I was sure I would be doing diapers forever. 

I am excited to see what will happen in the coming year for Sarah. I look forward to writing all about her wonderful-ness very soon! 

Newborn

EIGHT!

Seventeen Years

Oh how the years go by

Oh how the love brings tears to my eyes

All through the changes the soul never dies

We fight, we laugh, we cry

As the years go by

(Amy Grant)

As the years go by, the hurt doesn't go away. It maybe fades and becomes less sharp over time but the ache for her isn't very far away. I can remember the last time I saw my mom alive. We were having a camp fire with her and dad and as Doug and I walked away, I remember glancing back and waving good bye to her, having no idea I wouldn't see or talk with her again. I miss her. A lot. I wish she could have seen her other three kids get married - she'd have been a wonderful mother in law. I wish she could have seen all her grandkids - she would have loved them so much. I could come up with a thousand more wishes but of course that won't change the path I'm walking today. I can look and see how proud of us she would be and I'll hope that God gives her some updates as He feels necessary. She was beautiful, both inside and out and I will be forever thankful for the years that I had with her. 

When I receive a beautiful bouquet of yellow roses, I am reminded that she is still part of people's hearts and that I am loved by many others. I have an amazing family, friends who are like family and a network of loved ones. I am so blessed. My Father loves me more than anything and I take joy and comfort in knowing that one day I will see my mom's face again. Until that day though, I will live life the best that I can, glorifying God in all I do!

My in laws always remember...

Majesty, worship his majesty;
Unto Jesus be all glory, honor, and praise.
Majesty, kingdom authority,
Flow from his throne unto his own, his anthem raise.
So exalt, lift up on high the name of Jesus.
Magnify, come glorify Christ Jesus, the King.
Majesty, worship his majesty,
Jesus who died, now glorified, King of all kings.

Pediatrician Appointment {03.03.16}

March is cerebral palsy awareness month. This term didn't mean much to me until the winter of 2011 when after an MRI showed that Sarah had CP which was likely caused by oxygen deprivation while I was pregnant with her. I had heard the term before but on November 25, it became personal. I was the mom of a child with a diagnosis and I now fell into a whole new category of "special needs". 

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.

Cited from this LINK.

Sarah experiences many of the symptoms of cerebral palsy such as motor skills (fine and gross), bladder and bowel control, eating issues (very sensitive to certain textures) and learning delays. A lot of the issues also come from the severe microcephaly, causing her head to be considerably smaller than those of her peers. In fact, a few days ago I bought her a new sun hat - sized for 2-4 year olds and it's still big on her. She has been wearing the same hat for years because her head has been growing at such a slow speed. Although she could have used the same one as the past 3 years, I decided it was time for a new hat anyhow! 

Earlier this month Sarah had her six month check up at the doctor's office and as always, I like to keep a record of her growth patterns and such. 

She now:

• weighs 42 pounds (3rd percentile)
• is 3 feet, 10 inches (4th percentile)
• has a head circumference of 47.6 cm (-3.2 standard deviation)

The visit to the pediatrician went fairly well until the doctor attempted to take her blood pressure. For some reason, that terrifies her and so we skipped that part of the exam. Everything else seemed fine and we were on our way after that. 

She's still growing and developing at her own rate. I think she's still pretty little for a 7½ year old  and I think the kids, Doug and I still like that she fits in our laps so easily yet. I know for a fact that the other three kids couldn't snuggle the way she does. 

This picture was taken the week after we were at the doctor's office when Sarah, her sisters, brother and I were all down with bad colds for a week. As much as I don't like her being sick, it was a special treat to have her nap in my arms nearly every day!

Refiner's Fire

I recently was a reading a book and one of the questions asked was "What is my duty before the God who loves me?" This took me a while to figure out but I realized that I need to love people more and fear them less. I am easily intimidated by others and I tend to make people bigger than God. It's taken me some time, but I can now see that God is the one I need to look to for fulfilling my needs. I was created in His image and to image God means I must represent Him for His glory. I need to be like Him in every way.

For a long time, I had been relying on people to fill my cup of "need". I believed that I needed them to fill me with encouragement, love, support and friendship to make me feel good about myself. No where in the Bible does it say that I need to receive love so I can feel better about me. I was desiring these things not for God's glory but for my own pleasure. Jesus needed to break my cup of needs rather than allow it to be filled. Those needs had been growing and I was seeking people to fill them and consequently, I wasn't asking God to fill me up. Little did I know that I was about to enter the Refiner's fire. Through a series of events, I realized how unhealthy that was and in the process, God brought me to a place of brokenness and pain. A pain that reached my core and I can now see how that pain was His refining fire.

A refiner's fire does not destroy or consume, rather it refines and purifies. It melts down the metals, separates the impurities and leaves the silver and gold together. God is the refiner, the fire that purifies me. But, it is still a fire- hot, fearful and painful and although it comes at a cost it also has wonderful hope. 

I am tested because God loves me and when trials come my way, I know that I am being refined in Christ and I need to trust in Him. Through it all my character is being developed and I have hope of my salvation and I will not be disappointed in His love for me.

So what is it like in the the Refiner's fire? Honestly, it hurt. A lot. Over the past five months I have cried many tears, asked many unanswered questions and spent many hours asking God why. But as I've come through this fire and I continue on the path of following Jesus, I know that if there is no pain, there is no gain. I have learned to lean on the steadfast faithfulness and love of my Father as I trusted Him to carry me through. I've also realized that I "need people in my life in order to accomplish God's purposes so that I can reflect his glory" (Welch, 164). If I continued to think that I had this "cup" that needed to be filled so I could be happy, I wouldn't be able to fully be showered in God's love for me. The path of His love is not easy or without suffering but it will leave me overflowing - my cup that He fills cannot begin to contain all that He has for me.

I am now a stronger person, a little more confident in myself and am working at loving people more than I am needing them to fill me. I can look back and thank God for the lessons I have learned and I will continue to walk in His path. I also know that there will be many more fires to walk through in my life because God isn't finished purifying me yet. I need to be continually refined because I will always have impurities that need working on but God is good and I know He has wonderful plans for my life.

So back to the first question of "what is my duty before God?" It is to love people as God loves me. To show them grace and mercy as my Father has shown me grace and mercy. To show them the love of Jesus through me. I can see that the way that I need others in my life is different. I need them so that I can glorify God. To be taught and counseled, to ask me the hard questions and for me to do the same for them. His word encourages us to love God and love other people and that's what I am striving for.

 

40 Years Old

I have been waiting for this birthday for quite some time. I'm not sure if I think something great and wonderful will happen or what, but I'm really excited for this one. So, I've decided to do a post listing 40 things which you may or may not know about me. Feel free to ask me about any of them if you'd like!

1. I am the oldest of four kids in my family.
2. Princess Stephanie of Monaco shares my birthday. Odd little fact but I've known it for years.
3. I met, dated and married my first boyfriend. He's a pretty awesome guy!
4. I do not eat eggs, nuts or onions. I do eat peanut butter and french toast.
5. I am the mom to four kids on earth and three in Heaven.
6. Even though I am the oldest, I am also the shortest of my siblings. Why or how I received no "tall" genetics is beyond me.
7. I love yellow roses. Or white roses.
8. Summer is my preferred season- I barely put up with winter.
9. I have been alcohol and caffeine free for 16 months.
10. The above is because I have a few heart issues that I'm keeping an eye on.
11. I have never lived outside of Spruce Grove and I have moved five times in my life.
12. Up until 2.5 years ago, I had attended the same church since I was 2.
13. I had no idea I would love a little country church as much as I do. The family-type community spirit that I feel there makes Sunday a very important day of the week for me.
14. I didn't know how much God could change me once I was really ready.
15. My oldest two kids are 16 months apart and the girls are all four years apart.
16. I am the wife of an amazing, hard working man, which allows me to live my dream of being a stay at home mom and homemaker.
17. My mom died when I was 23 and my newborn baby was only 9 weeks old. Her passing was an event that changed my life in many different ways.
18. I love to eat chicken. Plain, in a sauce, on pizza, in salad... any way. I don't really like ice cream but if you offer me chocolate cheesecake, I won't say no.
19. My name is Stephanie. NOT Steph or any other form of it. I will respond to a shortened form but I don't like it. At all. Doug, my sister and my dad all have another nickname that they use. But that's just for them.
20. I can't jump. Please don't ask me to show you, just trust me.
21. Other than Sarah, I am also the shortest in my family.
22. I am the mom of a special needs daughter.
23. I have always been a fan of the Royal family.
24. Doug's parents have made wonderful in-laws. I am blessed.
25. In the winter, our bed has fleece sheets. I'm so thankful my wonderful husband puts up with them for a few months of the year.
26. I love to walk outside but I'm a fair-weathered walker- winter isn't for me.
27. My hands and feet are almost always cold. (see #26)
28. Since was young, there's always been a dog in our house. After our last one got sick with a brain tumor and we had to put her down a few years ago, I have no real desire to have another one for a very long time.
29. I'm not very adventurous- I like things to be predictable.
30. I love to spend time in the kitchen baking for my family or for others.
31. The past six months have stretched and challenged my faith in ways I couldn't have imagined and I believe I am a stronger woman for it.
32. I have a degree in Early Childhood but didn't really have a lot of time to use it since I became a mom fairly soon after we were married.
33. I have home schooled our kids since 2005. I think that makes me a veteran now.
34. I love books. Bookstores and libraries are my happy place. I need more bookshelves.
35. I never drank coffee until I was pregnant with my second. Now, coffee is my favorite thing to drink. Decaffeinated of course with cream and sugar.
36. I have read the Bible cover to cover once. I'm working on my second time through it now.
37. Our family has gone to Alabama twice. In a motor home. I keep saying when we go back, I'd rather fly.
38. I love people very deeply. This isn't always an easy thing but it is rewarding. I make close friendships and value and treasure them. I hurt when they hurt and rejoice when they do.
39. Purple has always been one of my favorite colors. I don't wear it or anything like that- I just like the color of it. 
40. I love my family with all my heart- I am doing it to the best of my ability and to glorify God in all I do!

I hope this next year (and beyond) is one that I can look back on and see how God has worked in my life. I want to strengthen and deepen my relationship with Jesus and I am excited to see what some of His plans for my life are.

 Psalm 139: 13-16

 ¹³ For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

So, this is just a small list of things and people that make me who I am- wonderfully created by my Heavenly Father!

Another First

As special needs parents, sometimes the "firsts" that we wait for take a really really long time. 

Today, Sarah was so excited to go outside and play in the snow. She found all the necessary gear that she needed and got herself dressed. Other than needing me to put her coat over the snowpants, pull on her mitts and boots, she managed to do the rest on her own. When I was looking at her all bundled up, I had a short moment of aching in my heart. She is 7 ½ years old and just starting to get dressed by herself. Those thoughts were quickly snuffed out as her beaming, proud face grinned back at me and she said "I did it all myself!" She did it. All on her own. It's moments like these that I'm so thankful for because they can outweigh the times that are discouraging.