Three Years Ago

It was on this day in 2011 when Doug and I sat in the pediatrician's office waiting to hear the results of Sarah's most recent MRI which had been a couple weeks earlier. I can remember entering the room and expecting or hoping that we'd be told that the tests showed nothing abnormal. I can also recall the shocked and slightly stunned feeling when he delivered the news to us.

This is what I wrote three years ago:

"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 is likely 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)

So, back to present day. Where are we now and what have we learned? Over time, the shock wore off. I was reminded by family and friends that the label doesn't change who Sarah is, nor does it define her. We went through two and a half years in the Early Intervention Program until Sarah turned five. They were memorable times and I learned a lot about how Sarah was and is developing. 

Sarah experiences most of the symptoms that CP displays. Her learning is slower than others which is also due to the severe microcephaly, but that's another post in itself. She has a very unbalanced diet which is high in carbohydrates and low in meats and veggies. It's not for a lack of effort on my part that's for sure. Her muscle tone, movements and motor skills are also compromised because of the cerebral palsy. 

I am thankful that she knows no different though. What Sarah lacks in many skills, she excels in others. She can love in ways that even I can't comprehend. She is loveable, charming and a delight to be around. Her laugh is contagious and she knows how to make anyone smile. She loves going to church and the people there have become like her second family. She is so eager to play outside with her friend Mr. Bruce and she even brought her snow clothes to church on Sunday so he could take her out. She loves people deeply and many of them have a special place in her heart.

As for me, there are occasionally moments and even days where I find myself hurting inside again. It's tough to know that she likely will not ever meet her peers' developmental level and always be behind. In fact, that gap will continue to get larger as time goes on. Watching her alongside other kids her age or even younger is hard at times. 

But, I am so thankful for the encouragement of friends and the love and support they provide. It's been quite the journey so far and I look forward to seeing where we continue to go.

Pediatrician Appointment {09.18.14}

For the first time (ever?) Sarah did not cry at the doctor's appointment. She wasn't exactly cheerful but she wasn't in her typical meltdown mood. It was just a quick weigh in and measure up check so we were in and out within 15 minutes.

She's doing just fine and the pediatrician said I'm doing "too good of a job of caring for her." And with that, he said we didn't have to come back for SIX months unless I had any concerns and we can come in at any time.

She is 43 inches tall (6th percentile), 37 pounds (4th percentile) and her head is 46 centimeters (-3.5 units below Standard Deviation). This measurement has not changed since last December.

Last Sunday, I got a little pony tail in her hair for church! She didn't love it but tolerated it. 

I thought she looked SO cute!

Pediatrician Appointment {06.10.14}

On Tuesday morning, Sarah and I headed out to the doctor for her quarterly visit. On this day, there was no snow storm, no icy roads and no university traffic. I must have made it there in record time!

It started out to be pretty discouraging when Sarah began to cry. In the van. In the driveway. I felt deflated and we hadn't even moved but thankfully she settled down and we headed off. This entire visit to the pediatrician was the most pleasant that I've experienced in a long time. Once we arrived, she wasn't happy or even in a good mood but she was pleasant and cooperative. One of the things that I notice with her is that she seems scared and nervous. I try to ease those fearful feelings simply by telling her that it's going to be okay, nothing will hurt as well as lots of prep beforehand. We talked about the doctor looking in her ears and mouth as well as listening to her tummy. My girlfriend's daughter has an app on the iPad that is an interactive doctor's visit and the two girls would play on that once in a while. Maybe that helped? I'm not too sure.

Overall, the doctor seemed satisfied with her and he said she's simply growing at her own (slow) pace.

In six months she's gone from 33 to 34 pounds (less than 3rd percentile) and she's grown half an inch and is now 42 inches tall (4th percentile).

She was pretty snuggly while waiting for the doctor.

24 Hours Later...

If you missed yesterday's post, you can find it HERE.

The morning dawned bright and early as Sarah's IV induced "nap" yesterday made her think that 3:30am was a good time to get up. I managed to stall her off for an hour but when she started to make her way downstairs, I figured I better follow. I sleepily made a coffee for me and a bowl of oatmeal for Sarah. We snuggled on the couch watching Netflix movies for the next hour.

Thankfully, she agreed with me that we could watch the same movie on my iPad in the bed. I dozed off and on till 6:30 when she decided that was enough and we made our way back downstairs, this time for good. During the morning, she was busy playing with her toys and acting very normal, although she hadn't had much to drink. She had extreme moments in the morning which consisted of either super playful or snuggling in my arms and consequently, crashed mid afternoon. We had a worship practice here this afternoon and during the music playing, she actually fell asleep in my arms.

It has been a very long time since I've had the feeling of a sleeping little person in my arms and it was pure joy.

When she woke up, she was insistent on a peanut butter sandwich and after checking with my sister in law, decided that it would be alright for her to have it. It was as if that was the boost she needed to get through the afternoon. She downed a couple cups of iced tea (whatever works!) and has been both playing and watching movies for the remainder of the day. I think she's recovering nicely although she's insisting on me being near her all the time. I think she's suffering from a slight case of post traumatic stress, which in her case is completely understandable. I am thankful that each day will arrive with a little more healing and she'll continue to feel better.

Dental Update

Our appointment for today was slated for sometime between 11:00 & 12:00. We arrived on time (no snowstorm today) and were quickly admitted into pre-op. She was given a wrist band and as you can see in the picture below, and that hand was rendered useless until we left for home. Moments later, we headed to the back room and Sarah started to get very suspicious and began to cry. They weighed and measured her, then ushered us to curtained room so she could change into hospital pyjamas, have her blood pressure taken and get a temperature reading. They also applied a numbing cream to her feet for the IV. Once that was all done, Sarah and I headed back to wait some more with Doug. I brought my iPad and she brought the comforts of her choice: a pink puppy, a kitty from Danielle, "small puppy" from Miss. Lesa and a blanket.

A big part of what makes an event like this so hard is that Sarah doesn't understand what is going on. Even when we told her (minutes before going into the OR) that a special doctor was going to fix her teeth, she didn't comprehend it. It doesn't make sense to her and she can't understand why her desperate pleas of "I wan' to go home" remain unanswered. I could only respond with "soon" and "later" and she wasn't very impressed with my noncommittal answer.

Over all, this waiting part went fairly smoothly. She was happy enough to watch "Frozen" or the other cartoons on the wall mounted TV. Around 11:35, we were called back again, this time for the real deal. Her cries became more pronounced and she was so very unhappy. Right away, we met with the nurse, anesthesiologist and the dentist; all who would be working with Sarah. I was gowned and capped up so that I could be with Sarah until she was asleep. The mask was placed over her and within a few seconds, the fighting and tears subsided as she slipped into dreamland. The dentist escorted me back to Doug where I finally fell apart. I had wanted to be so strong for Sarah and let her know that it would all be okay, and I did. We headed to the cafeteria to get some lunch but it wasn't long before I needed to go back to the waiting room. I loved how Doug said "I know you well enough, I know where you want to be." The pager went off around 1:00 and we met with Dr. K to discuss what procedures had taken place. My sister in law (who is a nurse) popped in to visit just as the dentist came into the room. 

Sarah's dental work was quite extensive. She received six caps, one filling and two extractions. Her poor baby molars were such a mess. I had no idea they were that bad, nor did I expect to receive news like that. As the dentist walked away, I broke down again with the combination of the shock of the news, being tired and not having eaten much. A fierce part of me needed to be with Sarah so very badly.  I didn't know if anyone knew her needs or her level of comprehension. Since she was still in immediate recovery, we had to wait another 10 minutes or so before we could see her. 

Sleeping in my arms (her face is covered so there is no picture of how rough she looked)

Finally, when we arrived in the room, it took most of my will power not to climb over the rail into bed with her. Once the guard was down, I climbed on the bed and held her close. She was so very sad and looked like she had been through a boxing match. It was awful. Her whole mouth was swollen, her mouth was droopy, her voice was croaky from the intubation and she looked really rough. Dr. K had given Sarah an early discharge, so once she had a few sips of water and another dose of Tylenol, we were given the go ahead to leave. The lovely nurse let us out a back door so we wouldn't have to walk through the waiting room past other patients. 

The ride home was uneventful. She dozed off and on for the 30 minute drive which was a relief for me. Being at home consisted of movies for the afternoon. Her speech was really thick sounding as she still had some freezing in her cheeks and tongue. She was also VERY unbalanced. It didn't take long before she wanted to eat and quickly downed a couple bowls of oatmeal. A friend of mine came by shortly after 5:00 with a delicious meal to feed us which was such a blessing... not having to make a supper after this kind of day was a real gift. I am so grateful!

By 8:00, Sarah was snuggled in bed with me (I'm keeping her close tonight) and ready to sleep. I received a call from the dentist this evening, as she just wanted to check up on us and see how things were going. She seemed pleased with Sarah eating and drinking and left her cell number in case we needed her. She also reminded me that kids are very resilient and she would recover just fine. 

As I type this, she's curled up against me, deep in slumber-land. I'm praying that tonight is peaceful and uneventful.

I am so thankful for those who covered Doug, Sarah and I in prayers today. I could feel the peace of Jesus over me, even when it was really hard. I appreciate the encouraging texts and I hope you all know how special you are to our family. 

Quick Update

Since I took a big Facebook break last winter, I've been posting considerably less than what I used to in the past. I update with my blog, an occasional picture and an update once in a while. I thought that I'd give an update on Sarah for those of you who enjoy my blog and would like to know how things are.

Last fall, Sarah saw a dentist for some concerns that I had. Upon a quick examination, it was clear that there was some work to be done but due to her lack of cooperation, we determined that IV sedation would be the only way to get her teeth fixed. In December we received a call saying that her appointment would be on April 4. That date seemed so far away at the time. All of winter, Christmas, my birthday... and now here we are two days before and the appointment is approaching very fast.

I hate having to do things for Sarah that will be extremely stressful on her, even though I know it's in her best interest. So much will happen to her on Friday and I will be powerless to save or rescue her. The numbing cream on her hands, the funny hospital pyjamas, the overall strange smells and sounds of a hospital... all these things that will put her already ultra sensitive sensory issues into overload. I think unless you've been there, you may not even be able to understand the scope of how hard it can be. She begs me to take her home with tears rolling down her face and I feel like I betray her because I can't simply save her. She trusts me for everything in her life. For food, water, safety and protection. That's my job; to protect and advocate for her. I'm not going to deny her the opportunity to have her teeth fixed even though it will just be one of those very hard days. I am SO thankful that Doug's work has been able to get our insurance sorted out early (before him being there for three full months) so that this procedure will be covered in part. I am also very grateful that he works in a place that it sensitive to family issues and can allow him the day off to spend with Sarah and I.

Tomorrow between 1:00 & 2:00, I have to call the hospital for my Friday appointment time. That's the soonest that I'll know more. Because she won't be able to eat after mid-night, I am really hoping for an early morning slot. It would be so nice to be done as soon as possible and come home to recover.

Cerebral Palsy Awareness 2014

Today is Cerebral Palsy awareness day. Something I knew very little about up until a few years ago.

November 24, 2011. Sarah received a diagnosis of cerebral palsy, which was likely caused by oxygen deprivation early on in my pregnancy. Up until this point, I'd only heard of that term and on that day, it became personal. 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 understood, was the cause of her balance issues. Over the past few years, Sarah's balance has become more stable, although she is much more "stumblier" than other kids her age. We still tend to wince as she runs around corners or walks past the corner of the counter top. 

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 here)

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 oral motor 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** 

There are many different degrees of cerebral palsy, with a large spectrum. Sarah falls on the mild end. Most of her delays are caused by the severe microcephaly while the CP causes her balance to be off a bit. I think it is also the cause of her weaker muscle tone in her legs and why she drags her toes when she walks. 

I have gone through a lot of moments of grief and sadness over the past two years. Some days, I'm still really sad that she will never catch up to her peers, and rather the gap will continue to increase. They will get further and further ahead and while Sarah will develop, it will be at a much slower pace than them. I am sad for what opportunities she may not have and I worry about how others treat her, especially since she acts so much younger than five.

It only takes a glimpse of her and her amazingly contagious smile to see what a blessing she is to me. She is almost always joyful. She shines with happiness and frequently checks in with her family with a "Are you happy?" She is easy to please and loves life. As long as there is Curious George, her baby, bananas and pink cheerios, then that's all that matters in her little world. I am blessed!

Pediatrician Appointment {03.04.14}

Why does it not surprise me that the night before an appointment, the snow would blow in? Once again (like last time), the usual 35 minute drive to the doctor's office took me nearly 90 minutes. The roads were really slippery and SO busy.

Her regular doctor was away so we saw the other pediatrician in the office. I wasn't overly impressed as she was very business-like and it seemed like all she was there to do was fill out the required paper work. Sarah needed a pre-op done for her dental work which is in a month... Yikes! We've waited for this appointment since December and I can't believe it's this close already. Although Sarah was unhappy at the doctor's office, she wasn't nearly as frantic as she has been in the past. I believe that people were praying for me and I could feel the calming peace of Jesus as I sat there. I'm so thankful for friends who care so very much.

After all was said and done, she has gained a couple pounds and her head size has stayed the same. 

The majority of her afternoon was spent cuddling me and shedding many tears and that was mostly because I wouldn't take her to a friend's house. I needed to get a few things from the store and so I grudgingly packed up all four kids and headed out. This is what Sarah does when we go to a larger, busier shopping center (like Wal Mart). I really think I should just stop bringing her and stressing her out. One day I'll learn!

I was exhausted after all that. It was a stressful drive in, an appointment, complete with the usual tears and an afternoon that was full of more crying. I think she was more than happy to have her bath and go to bed. Hopefully after a good night's sleep, she'll be doing much better today!

Parent Appointment (12.10.13)

Yesterday afternoon, I had the opportunity to meet with Sarah's pediatrician. By myself. Without my sweet (screaming) daughter. It was probably the best appointment I've had with him. The clinic was closed except for the doctor, myself and a few nurses.

When I sat down in his office, Sarah's chart was set out and open already, which was kind of nice because I felt he was prepared. For a while now, Sarah has been displaying some really odd symptoms and I needed to voice my thoughts and see what Dr. M's ideas were on it. Some of these things are:

• flaps her arms
• spins (and doesn't appear to be dizzy)
• she doesn't make good eye contact
• no understanding of fear and danger
• laughs inappropriately
• insensitive or oversensitive to pain

He showed me Sarah's head circumference chart which indicates her head size to be markedly lower than the average five and a half year old. He said that out of 100 kids, 96 of them would have an average sized head, two would be above average and two would be below. Sarah would be one of those two and she's an extreme case. Now, because her head is so much smaller than average, the result is severe delays in all areas of development. These include fine and gross motor skills, social interaction, auditory memory (remembering what she hears), visual memory (remembering what she sees), self help, expressive language (what she can speak) and receptive language (what she understands).

So, in a nutshell: all of Sarah's delays are due to the extreme Microcephaly: (Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. Microcephaly can be present at birth or it may develop in the first few years of life). 

Depending on the severity of the accompanying syndrome, children with microcephaly may have:

•  or learning disability
• delayed motor function and speech
• facial distortions,
• dwarfism or short stature,
• hyperactivity,
• seizures,
• difficulties with coordination and balance, and
• other brain or neurological abnormalities.

Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Previous notes taken from HERE

Due to her immaturity (Dr. M placed her at about age 2), she might display autistic-looking "symptoms" only because of the delays that are reflective of the Microcephaly

He told me that she will always be fairly behind kids her age and the gap will continue to grow as she gets older and that's because she's developing at a much slower rate than others. She also very likely will be dependent into her adulthood. Maybe not, but he said to be prepared for a lifetime of supporting her.

Sarah is still really small for her age and is severely disproportionate which is why she looks like a little adult. If you don't know what I mean, the next time you see her, you'll that she doesn't have the large "bobble" head that other kids have.  So, when all is said and done, I am really thankful I had to opportunity to talk to Dr. M without a (loud) distraction. He is blunt, honest, very good at what he does and has a true love for kids, including Sarah. I also know that nothing has changed and that Sarah is still Sarah. Homeschooling her is and for now, always will be the best thing for her because I can follow her lead and teach her what I think is relevant to her. I am blessed to have friends who are supportive and encouraging, including someone who texted with me until 10:30 last night offering me some hopeful and reassuring insight to what I learned today. She's very appreciated and I am very thankful for her and the time she gives me!  This is what recovery from a Dr. appointment looks like! So how are we doing? Doug and I are now processing the idea that Sarah may possibly be dependent on us (or someone else) for a very long time, possibly forever. I think both of us lost some sleep last night as those were the thoughts that consumed us. Sometimes it feels like I take two steps forward and then one step back as far as my faith walk goes.  The verse that keeps coming to mind is found in Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. This is the foundation of what keeps me going on the rough days when I feel like the weight of the world is on my shoulders.  The song The River by Brian Doerksen is one of my favourites and seems to be ringing true for me today. If you have the chance to listen to it on You Tube, you should. Here's the lyrics: To the river I am going bringing sins I cannot bear  Come and cleanse me, come forgive me Lord I need to meet you there  In these waters, healing mercy flows with freedom from despair  I am going, to that river Lord I need to meet you there  Precious Jesus, I am ready to surrender every care  Take my hand now, lead me closer Lord I need to meet you there  Come and join us, in the river Come find life beyond compare  He is calling, He is waiting Jesus longs to meet you there  He is calling, He is waiting Jesus longs to meet you there  Precious Jesus, I am ready to surrender every care  Take my hand now, lead me closer Lord I need to meet you there  Take my hand now, lead me closer Lord I need to meet you there

Pediatrician Appointment (12.04.13)

Well, if I were to anticipate anything going wrong this morning, I was not disappointed. As I like them early, Sarah's appointment was booked for 9:00 in the morning. That does mean an early start but it also means that the doctor can't be behind yet and we usually get in fairly quickly. If things go smoothly, I can be in and out and back home (driving included), in less than two hours. By 8:00, I had Arianna and Sarah in the van and we were on our way. I entered the address into my handy dandy GPS and set off. After a bit, I thought it was odd that the GPS started leading me back home and so I ignored it and continued on my way. As I approached the freeway (the Whitemud), I read the warning sign of an accident and major delays. Of course.

The GPS told me to turn off the freeway and so I did. I followed it to a tee. The only problem occurred when I didn't know how it was going to take me to where I wanted to go. I had only been down some of these roads as a passenger and felt quite intimidated and a bit worried. So, I called the one person I knew would know and could explain it to me... Doug. As he knows me so well, he gave me landmarks that I would pass, where the roads would lead and how the GPS was taking me to the office. After driving for almost an hour and a half, I finally arrived, 25 minutes late. Thankfully I wasn't the only late patient and it was all fine in the end. Once we were settled in the examining room, the usual tears began to fall. And cry she did. She didn't gain a whole lot but she doesn't eat a whole lot either. I left the appointment thankful that it was over and I was more than happy to get home.

Once I got home, I called the pediatrician's office and made a parent appointment for next Tuesday so I can discuss some other things with him. I just feel like I'm looking for more answers as to what might be going on with Sarah... more on that next week.

Weight: 33 pounds (32.5 pounds in September) 
Height: 41.5 inches (40.75 inches in September)
Head Circumference: 46.5 cm (46.2cm in September)

FSCD Meeting #3

Every year around this time in September, my contract with FSCD comes due for renewal. Each year now, I have had a new social worker. Since I only see them once a year it's not a huge deal but it does mean talking about EVERYTHING all over again. The first one I had moved on so I was "given" someone else. Now whether it's right or wrong, I just didn't feel like this person really cared. They were very business like and I didn't have a good feeling about it. So this spring, I had put in a request for a new social worker. One specific requisite was they needed to be female. I am sure that God had His hand in placing this new person with us. She is a young parent and appeared to genuinely enjoy her job. We did start from the beginning since she didn't know Sarah at all but there were no negative comments about my parenting (as there were in 2012). I did tell Doug that these social workers are WAY less personable that the other services that I've received such as Early Intervention and Speech Assessments. Aside from a quick "hello", the social worker said or did nothing with Sarah. Certainly different. At least I felt positive after this visit as opposed to being angry at things that were inferred by the former worker last year.

Nothing in our situation has changed and so our contract will pretty much stay the same!

Dentist Woes (Edited 09.14.13)

Three months ago, I booked an appointment with a paediatric dentist who has experience with special needs kids. A big plus in my books.

Well, Sarah did not disappoint me in how she reacted to finding out we had another appointment. She began to cry before we even left the house... I didn't feel overly confident at that point. After a massive meltdown, I agreed to let her go in her pyjamas. Who cares anyhow right? She cried off and on for the 30 minute drive. I was exhausted already since I didn't really know where I was going (SO thankful for my GPS) and I felt done. I really look forward to the day that an appointment doesn't mean she cries the entire time. It is so unbelievably stressful.

After a typical wait, we saw the dentist. The tears increased in intensity and the dentist and I talked above Sarah's wails. She did look at Sarah's mouth, indicated a couple cavities and agreed that anaesthetic would be necessary to get the work done. Because she will need to be sedated, we're going to have to wait for an appointment at the Stollery which will be in March. And so begins another long wait. It will be nice though because Sarah's teeth will get x-rayed, cleaned and repaired as needed all at once.

****************************

September 14, 2013
Two things I forgot to mention:

1. The dentist said that there is no further harm that can or will be done with the use of a soother. Either the damage of her spaced teeth is already done or it's genetic. Joshua has teeth that have large gaps in them and he never used a soother, Andrea had a soother and has great teeth. Seeing as the soother is a crucial part of getting her to sleep, I was reassured that Sarah can still use it. 
2. At one point while Sarah was in the dentist's chair, I saw the glazed look in her eyes that I saw before her seizure in August. Knowing that the previous one was caused by a breath holding episode, I began to rub her chest in comfort and kept talking to her in an animated voice. She did take a big breath and started crying again. For a brief moment, I was sure she was going to seize again. I'm so glad she didn't, especially with Arianna there with us.

Pediatrician Appointment (09.09.13)

Getting up early for these quarterly appointments isn't so bad when the sun is shining brightly and the skies are clear. I'm already dreading the drive in December when the roads will be snow and ice covered.
This morning Sarah's appointment was for 9:15 and my awesome mother in law came by at 8:00 to drive into the city with me. It's nice to have someone along for company and moral support. We arrived eight minutes late due to three big accidents on the main freeway but that was ok. Interesting note: Sarah started to cry about five minutes BEFORE we even arrived in the parkade. It's always discouraging to me when she starts to get upset and we haven't even seen the doctor. She wasn't really happy again until we got in the van. 

The visit today was pretty short. Mostly just a check up and a look at how she has grown.

Today she came in at:
Weight: 32.5 pounds (31.9 pounds in June)
Height: 40.75 inches (40.5 inches in June)
Head Circumference: 46.2cm (46.2 cm in June)


So the deal is that she's just small and she's following her own (slow) curve.

As for the seizure that happened in August, he said it sounded like a case where she scared herself, couldn't catch her breath and then passed out. This lack of oxygen caused a seizure. He said it could happen again or it might not. Generally these episodes stop around the age of six. I'm going to just keep hoping that it was a one time thing and that I never have to deal with it again.

The Scariest 60 Seconds of My Life

The day was completely normal with a highly anticipated trip to visit my sister in Calgary. The drive down was uneventful and we arrived in good time for Alicia and I to have a good visit. Once her youngest woke up, we decided to head to a playground which was about a 7 minute walk away from her house. As my sister and I were chatting near the swings, I saw Sarah trip on a 2 inch curb and land on her hands and knees. She was about 10 feet away and I quickly rushed over to help her up. She didn't appear overly upset other than she pointed to her hand. As I lifted her up, her head flopped backwards, her back arched and then when I gently set her on the ground, her eyes rolled back into her head. I remember screaming for my sister to help. She ran over and asked if she was breathing. We both felt for breathing and as as we did, Sarah gasped for breath and began to cry. I scooped her up and held her close as she continued to cry in my arms. Alicia noticed that under her eyes was quite blue as was the skin around her lips. From the time I saw her trip until I was holding her crying, was probably around 60-90 seconds. She didn't lose consciousness or fall asleep afterwards but she did want to go home. She relaxed in the stroller on the way back and seemed to be pretty much normal after 20 minutes or so. 

I called Sarah's pediatrician and spoke to a nurse who didn't think it was a typical seizure but rather just a reaction to a situation. I'm not totally convinced about that because the fall wasn't that hard or anything serious. One of the things that my sister found online that sounds very much like what occurred was REFLEX ANOXIC SEIZURE. The site says:

"Any unexpected stimuli, such as pain, fear, fright or even a pleasant surprise can cause a seizure. During the seizure the heart stops, the eyes roll, there is a marked pallor (paleness) of the skin and clenching of the jaw. The body also stiffens and there may be jerking movements of the arms and legs.

After a few seconds to half a minute, the heart starts beating again and the body relaxes. The child may remain unconscious for anything from a few minutes to well over an hour as children often fall into a deep sleep afterwards."

Of course this is just something we found on the internet but I'm planning to talk to her doctor about it in a month. 

It's been over 24 hours since this happened and my stomach is still uneasy. The sight of my baby in the state that she was in is something that is etched in my memory forever. 

A Few Things That Parents of Special Needs Kids Shouldn't Feel Guilty About

I read a very encouraging blog this morning and with her permission, I'm blog lifting from her post. I’ve mixed her ideas with some of my own as well as some direct quotes from her. You can read more of her stuff HERE.

• Taking a break. I think for the most part, Sarah is pretty easy to take care of but she does require a fair amount of one on one attention and lots of it. She needs to be watched constantly as she lacks the judgement to be safe or to make appropriate decisions. I have found great comfort in the respite care that I've found for her and the time allows me to do other things that I might not otherwise be able to. This was a huge step for me to overcome as I tend to think I can do it all. Thankful for the wisdom of someone who encouraged me to take time for myself.

• Thinking that you "caused" your child's disabilities. I'll admit, this one touches close to home. I know in my heart that nothing I did caused Sarah’s delays and that the suspected oxygen deprivation early in my pregnancy wasn’t my fault. I play and replay in my mind all the suspects from the pregnancy and even beyond, wondering if anything I did differently would have changed. Probably not. 

• Giving up on redirecting or reminding your child. Whether it's your child's persistent banging of knees against the kitchen table or humming, at times you run out of strength to say, "Stop!" Go on, flee to another room or let your significant other deal. You can't always be on.” ~Ellen~

• Letting her zone out to the TV/iPad. I don’t really want her to spent insane amount of time in front of a screen but sometimes it’s necessary for survival. Mine and hers. 

• Spilling to your friends. If they are good friends, they'll be there to listen to you angst about your child and give you perspective, just as you are there for them. ~Ellen

• Writing about your child with special needs. I write so that I have a record of what I’ve done or have yet to do. It’s therapeutic for me to do it like this and even if I encourage one person, then I’ve met my goal. I also write for awareness of delays, microcephaly and cerebral palsy. I will admit though, sometimes I wonder if people really want to hear more or not...

Pediatrician Appointment {06.12.13}

Ah yes, another one of these reluctantly anticipated days. As per norm, I didn't sleep well the night before, although I worked hard at being happy knowing that Doug would be coming along. A part of me had hoped that as she approached five years old, Sarah would simply be ok at the doctor's office. Maybe next time...

The three of us headed into the city together and we told Sarah we were going on a 'date' with her. It wasn't until we almost pulled into the parkade that we dropped the news that we'd get a donut after seeing the doctor. And the tears began to fall. Before we even entered the office. Our appointment was for 9:00 and we only waited about 5 minutes until we were called into the examining room. Sarah had curled up into the fetal position, sitting on my lap. The nurse came in and the sobbing continued. She didn't like her head being measured, she certainly did NOT appreciate her blood pressure taken, and the rest of the measuring didn't get any better. She really does like the doctor. But she still cried. The. Whole. Time. He was pleased with her {slow} progress and told me I was doing a good job. We did get a name for a pediatric dentist but the doctor didn't seem overly concerned about her teeth. And we get to go back in three months.

After any stressful time like this, it seems like Sarah's whole day is then 'off'. She cries a lot, appears to be overly clumsy and therefore falls or bumps herself often which means more tears. Once we arrived back at home, she had a shower with Arianna and put her beloved sleeper on. She doesn't really have a favorite stuffie or blanket but she adores her fleece pyjamas  We spent some recovery time watching movies and snuggling in front of the fire. I foresee an early bedtime for this little girl.

And yes, she is growing. Slowly, but gaining.

Weight: 31.9 pounds, 5th percentile (31.3 pounds, 5th percentile in February)
Height: 40.5 inches, 8th percentile (39.6 inches, 10th percentile in February)
Head Circumference: 46.2 cm, -4 standard deviation (45.7cm, below -4 Standard Deviation in February) **An average five year old's head is 50cm.

So she's still pretty little. Because of her small head and her proportions, she looks like a mini grown up. She doesn't have the bobble head look that many preschoolers still have. But like Andrea said, if "cuteness" had a scale, Sarah would be on the top!

Untitled...

I didn't know what to call this post and so "Untitled" it is for now.

Dear Sarah,

Saturday was a tough day for me. The day before, you began to complain about your mouth hurting and I know that it's because you need some dental work done. Because of your sensory issues, seeing a general dentist for some fillings won't be possible. There's no way you'd sit still enough to get the x-rays done, never mind holding the films in your mouth. This means we are needing to look into intravenous sedation. We need to look for a dentist who does exactly that, plus someone who is good with kids, and possibly even special needs kids. This stresses me out emotionally, physically and even financially. I'm hoping we will receive benefits through FSCD since I'm pretty sure it will be defined as a medically necessary procedure. 

Today, I tried to read a book. By myself. Even though you were in the same room as Arianna, you managed to find (or produce) a marker and you colored all over your arms, legs and pants. Andrea simply set you in my room and I knew my 5 minutes of "me time" were over and so I began to run you a bath. You love being in the big tub. The water is warm and you enjoy the feeling of being bare skinned. Washing your hair is quick since you do NOT like your head being wet. 

Sorry honey, it has to be done. 

I'm sorry I was upset today. I love you more than anything in the world. I wish I would not be frustrated. I wish that I didn't get unhappy with you. I'm sorry. Thank you for being the most forgiving person I know. I'm sorry that my patience wears thin. I try so hard to be a good mom for you and I want to do a good job. I want the best toys for you, I want the best helps for you, I want you to be happy because that's all you really ask for. Everything that you desire is simply for your contentedness. You are not selfish or whiny. You are not rude or demanding. Kids take away your toys, right out of your hands and you let them. You do not fight or argue. You are easy going, sweet and wonderful. Your requests are so good. Food, water or to be held. That's it. 

Sometimes when you are sleeping, I will lift you into my arms and hold you tight. I apologize for my bad day and beg you to forgive me. I also promise that each new day I will do my best to ensure it goes better than the one before. I  pray that I will wake up happy and cheerful, ready to face the joys and challenges that you bring my way. I am learning so much about you sweet baby of mine. I never thought I'd know so much about learning disorders, cerebral palsy, microcephaly or brain damage. 

Thank you for everything Sarah. Thank you for loving me unconditionally. Thank you for letting me be your "best ever mom". Thank you for asking for hugs all day long because I need them too. Thank you for making me feel needed. Thank you for teaching me so much. I'm not perfect but I do care enough to keep on going, even when it gets tough.
I love you.

And the results are...

I just received a letter from the genetics lab. Sarah's aCGH (Microarray-based Comparative Genomic Hybridization) results were normal. 

"Many human genetic disorders result from unbalanced chromosomal abnormalities, in which there is net gain or loss of genetic material." (cited from HERE)

Sarah's testing was inconclusive, showing nothing identifiable through the testing technology. No clinically significant areas of copy gain or loss were found in the tested regions of her chromosomes. It is of course, possible that her medical concerns are still genetic, just nothing that was discoverable. 

I'm not totally sure how I feel about it since part of me was hoping that there'd be something for us to go on. I don't really like the mystery side of things and was wanting something tangible. We can go back to re-evaluate if we wish but I don't know that the stress of more blood work and the 17 months of waiting for a non-answer is what I'm wanting either.  

Just some more processing to do... 

Tidbit Tuesday

Yesterday, Sarah had her second to last home visit with Wendy from Early Intervention. Since I will not be able to access their services after Sarah turns 5, I had requested a final DISC assessment, simply to see where Sarah is at and what I would do (if anything) for the fall. Our first official DISC (Diagnostic Inventory for Screening Children) was done on May 16, 2011 and we've had a couple informal screens done since then. The results from yesterday are as follows:

Fine Motor: 44-45 months (14-15 months delayed)
Gross Motor: 47-48 months (11-12 months delayed)
Receptive Language: 42-43 months (16-17 months delayed)
Expressive Language: 44-45 months (14-15 months delayed)
Auditory Memory: 42-43 months (16-17 months delayed)
Visual Memory: 37-38 months (21-22 months delayed)
Self Help Skills: 39-40 months (19-20 months delayed)
Social Skills: 51-52 months (7-8 months delayed)

Here it's shown how she has improved over the span of two years. She's still marginally below her actual age (the top black line is her current age) but as Wendy said "onward and upward". The top pink line shows where her abilities are at as of yesterday. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So what does this mean? Obviously, since developmentally she is between 3 & 4 years old, kindergarten in the traditional sense isn't very practical or logical for her. We will spend another year doing hours and hours of play time with her siblings and friends. In the fall of 2014, I can consider enrolling her with the homeschooling board that the older three kids are in. At that point we will have access to additional supports with our facilitator. I've decided to put the kindergarten year to rest. It can't and won't happen for us, at least not now.  How do I feel about that...? I'm working through it.

The above charts say the same thing, just in a different way. In some areas, the gaps continue to increase as we were told they would. She will keep growing, just slower than others. 

"Come to me, all who weak and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls." 
~Matthew 11:28-29

A Daddy's Thoughts {Guest Post} Part 1

Today's blog posts (one long one split up) are brought to you by my wonderful husband. 

"A guest post?  By me??

I’ve thought about starting a blog of my own, but haven’t ever taken the first step. (Maybe I’ve been a bit intimidated by the well composed thoughts that Stephanie has published) Now as I write this post as a “guest” of my wife perhaps that seed will take root!

Stephanie has asked me to provide some of my perspective on our youngest daughter (Sarah) and to tell some of our story through a Dad’s viewpoint.  It’s something that I think of often, but I’m not sure as to how to put it into written form.

Let’s start with a description of Sarah herself.  She is in many ways the most demonstratively loving person that I know.  Somehow she has an intuitive sense when someone is feeling down, and she responds immediately with hugs, “cunggles” (cuddles), and kisses.  Perhaps the most striking examples of this side of Sarah were evident at the funeral of my Grandma Wunsch last summer.

If you read this blog, then you are well aware that we (okay, mostly Stephanie) homeschool our children. We view living and sharing life together as the best means by which to prepare our kids for their adult lives.  That means allowing them to walk with us through some of the tough parts of life to see how we handle it... and helping them to break down the parts that went well and the parts that we should have dealt with differently.  That’s how we all learn to move forward in life.

When Grandma passed away, it was an opportunity for all four kids to learn that:

1. Death is indeed a part of life, and 
2. There are various ways and reasons that people grieve, and 
3. There are various ways that people gain comfort and give it to others

With these things in mind, they all came with Stephanie and I to the funeral. All four of them handled themselves well, but for the sake of this post I will focus on Sarah.

Stepping into the foyer of the funeral home, the first thing that she saw was the people that she loves... Grandparents, Uncle Mike, Great Aunts and Uncles, Cousins and Second Cousins, family friends, and people that she loves but hasn’t met yet.  After saying hi to some people very quickly, she zeroed in on Mrs. Bannister.

“Grandma Bannister” as we call her, is the mother-in-law to my Mom’s brother. She has been coming to Wunsch Bunch gatherings for many years, and she is a hugger.  Grandma Bannister is a sweetheart of a lady, and naturally was saddened to have lost the one person in the family who understood what it is to be a widowed family matriarch.  Sarah bee-lined for Grandma Bannister, and immediately asked for a “hug-uppie”; her way of asking to sit on your lap for a hug and cuddle.

With some effort, Grandma Bannister lifted our little peep to her lap, and was rewarded with a big hug and a kiss on the cheek for her efforts.  A smile came to Grandma Bannister’s face, and her body language relaxed in the way that is visible when one knows that they are genuinely and unconditionally loved.

A few moments later, Sarah met my cousin for the first time.  Aleta had driven from the interior of British Columbia to be at the funeral, and (like all of us who were present) was having an emotional moment as we gathered in the family room to prepare to enter the funeral chapel.  I can’t even begin to guess why, but rather than reach up for a hug, Sarah chose to kneel down and place a big kiss on Aleta’s foot. Maybe she couldn’t see how to give a hug to someone who was sitting with a kleenex to keep makeup intact, but she knew that some form of comfort was called for!

After the service (which Sarah behaved very well for), it was time for the internment.  Walking to the graveside was a sombre affair on the sunny afternoon.  Little was being said as people made their way across the manicured lawn and through the rows of headstones... until Sarah’s voice rang out.

“F’owers!!  Look Mom, f’owers!!!”

It made me look up.  Sarah was entirely right. The grass was green, the skies were blue, and many (if not most) of the graves had colorful bouquets on them.  It was a well kept place to remember loved ones, and for the first time I focused more on the flowers than the markers that gave small insights to the lives of the deceased.  

Even a graveyard can be a place of beauty and wonder if you use the right lens to look through.  On that day, it was the lens that Sarah provided which opened my eyes to see.

That is one day in the life of Sarah that provides a lot of insight to her personality."