Microcephaly Day | September 30

Microcephaly awareness day is tomorrow, September 30. Although we will never know the actual cause of Sarah's delays, her pediatrician suspects that at some point early in my pregnancy, her brain suffered from a lack of oxygen.

When she was born, she was so tiny despite being almost 1.5 weeks overdue. Barely six pounds and 17 inches tall. I had never held a baby so tiny.

We had never heard the term "Microcephaly" until we began seeing our current pediatrician around Sarah's third birthday. His diagnosis was almost instant as soon as he saw her. The Mayo Clinic defines microcephaly as:

"a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Sometimes detected at birth, microcephaly usually is the result of the brain developing abnormally in the womb or not growing as it should after birth." (Mayo Clinic)

I believe that microcephaly is the greater diagnosis rather than the cerebral palsy. I have no medical reasoning other than doing my own research and seeing the effects of it. Sarah's head circumference is 47.6 centimeters which is average for a 20-22 month old. In comparison, a nine year old should have a head size of about 52 centimetres.

The consequences of microcephaly are:

"...depending on the cause and severity of the microcephaly, complications may include: 

• Developmental delays, such as in speech and movement
• Difficulties with coordination and balance
• Dwarfism or short stature
• Facial distortions
• Hyperactivity
• Mental retardation
• Seizures"

(Mayo Clinic)

With Sarah, the most obvious effects of microcephaly are her severe developmental delays. She doesn't act, behave, speak or learn like a typical 9 year old. Instead it's as though we have a 3-4 year old all the time. We have seen that over time, her coordination and balance have improved quite a bit. She struggles to walk long distances so the stroller is still a useful tool in our lives. 

She loves life. Other than a few things that make her unhappy, she is an absolute ray of sunshine in our lives. Her family is her world and many times during the day she will check in with me as to everyone's whereabouts. Sometimes she will just say "mom" to make sure I'm still around. She is so easy to please with a walk, visit to a park or a quick trip out for some fries or a donut. She loves to play with Duplo, wooden trains, and stuffed animals. 

Having a child with a "special needs" label was not something I ever thought I'd have but Sarah has enriched my life in ways that I cannot explain. I am blessed and can't imagine life any other way.

Tuesday Thoughts...

For the past couple of days, I have waited to go to the park with Sarah until the evening. She's on some medication that makes her skin more sensitive to the sun so we've gone out after supper. Last night as I was reflecting and watching her play, I had a few thoughts come to mind. Sarah is nine years old. Her style of play would say otherwise though. As I was observing her it seemed like the word "simple" was one to describe her. Sure there are other things that make her uniquely complex but something about seeing her play outside was simple. She went on one slide over and over again with no need or desire to try anything else out. Part of this is because the amount of louder kids on the other equipment keeps her from venturing too far. After 20 or more "slides", we made our way to the swing, her little hand tucked in mine. The large swing, designed for special needs kids was free and she quickly made her way over. This type of swing allows her to relax and fully enjoy the swinging motion without having to think about holding on or balancing. After the swinging, we made our way back to the now empty climbing structure where she began to take my order and made me coffee, fries, and hotdogs.

She's a quiet observer when she's out. Occasionally she will interact with other kids but only if there's one or two and if they appear to be calm and usually they are younger in age than her but closer to her developmentally. Last night I was her playmate and we had a wonderful evening together. These are the things she remembers and I love being with her, playing and watching her discover the world around her.

The swing that makes her feel safe and secure

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!

I Made a Choice

I'll be the first to admit that not every day is easy with Sarah. She puts on a good face when she's around others and usually friends get to see her best side. Saturday morning was one of those times where the severity of her special needs came through, loud and clear. Literally as she cried most of the way from Edmonton to home- about 25 minutes. It was exhausting listening to her desperate pleas of begging to have me cuddle her. No matter how many times we told her she needed to be in her carseat where it was safest, she wouldn't be convinced. By the time we arrived back at home, she clung to me as her hicupping sobs slowly subsided. I too was deflated and my own tears flowed as my emotions seeped out of me.

{She hasn't ever enjoyed her car seat- in fact, she cried all the way home from the hospital as a teeny newborn. Although she doesn't always cry, most times she fights it. Getting in is fine and she usually is happy to be going somewhere. The "fighting" (as we've dubbed it) means she pushes on her thighs with her hands and her legs lift up against her hands. It's a small, but fluid motion and requires many reminders to ask her to stop. There are times when she's so resistant, she almost doesn't even hear us. If one of the kids is paying attention, they can set their hand on her leg and she's perfectly fine. Not very comfortable for them, but it calms her. At the end of September, we are making a long trip to see my brother get married. Needless to say, after only 25 minutes of crying, I wondered how the six of us will survive a trip to the coast.}

Later that day, as she and I spent the afternoon in the backyard together, I sat on my chair reflecting on her and who she is. I knew I had to redirect my thinking from frustration to doing something that I know Sarah loves. And that was to take her for a walk to a park. She loves going to playgrounds, especially when there's no one else there. Again, I think it has to do with her sensory issues and if she only has to worry about herself and not what the other kids may do, she's much more relaxed.

 At the top of her "mountain" and she was the queen!

On Sunday, I suggested that we head downtown and check out the Legislative grounds. It was a lovely day and when we arrived, it wasn't even that busy. Sarah loved wading in the pools. Once she realized that her dress could get wet, she had a wonderful time splashing and playing in the water. After the rough beginning to our weekend, I'm so thankful I was able to make it a special time for Sarah and the rest of the family. 

Sensory Bins

The other day I came to the re-realization that there are very few supports for Sarah and myself since I chose to homeschool her as a special needs student. I began to do some looking online at something called "sensory bins" which is a bin that is filled with pretty much anything the imagination can conjure.

So... I bought an e-book that talks about what to use as the base:

1. rice (colored or not)
2. pasta (cooked or dry)
3. popcorn kernels
4. oats
5. flour
6. cloud dough
7. dried beans
8. shredded paper or Easter basket hay
9. water
10. sand
11. dirt
12. flour
13. cereal
14. marbles
15. water beads
16. cotton balls
17. shaving cream

Really, the list is endless... My first bin that I created was with rice. Dyed red. This rice bin kept Sarah occupied for 4.5 hours! Once the base is determined, you can add whatever you'd like to engage their minds. A lot of the ones you'll find online are very thematic and I may go that way later but for now, I'm doing Sarah's purely for the play value.

Then I found a recipe for cloud dough which is 1/4 cup of vegetable (or baby) oil and 2 cups of flour. I didn't have an oil based food dye so mine didn't color. But that's on my shopping list! :) 

Even Arianna got in on the fun!

Then I began to dye popcorn!

And chickpeas!!

It's only been two days but so far it's kept her busy for hours! I can't wait to use these super colorful items and expand on Sarah's play time! 

(ALL methods of coloring were found online, none of them were my own idea)

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. 

First Snow

Due to her oversensitivity to bulky clothing and foot wear, Sarah has not ever played outside in the winter. In addition, her balance is questionable and I never wanted to hinder that by layering her up with thick boots, snow pants and a big coat. She never minded and was always happy just to stay inside and watch others. Until today. The snow began to fall and by late afternoon, there was a thin layer on top of our grass and everything in her begged me to let her outside. She put on the snow boots that I purchased as well as a winter coat, hat and mittens. She was so excited. I was proud to the point of tears that she had come to a point in desiring to be outside. She made a snow angel, tracks and a bitty " 'no-man". I am so excited with this HUGE step for her.

"Off" Days

Some days I spend large amounts of time wondering what's going on in Sarah's head. Today she was inexplicably "off" and out of sorts. Maybe it was the runny nose from allergies, maybe she's over tired... maybe, maybe, maybe...

The littlest things made her cry such as the broken string on her balloon or someone not understanding what she wanted. She insists on being near me all the time and it can make for a long day. It's sad and even frustrating to see her so upset that she begins to intentionally run into walls or smack her head with her hands. She doesn't have the communication skills to tell me why she's so upset and her only outlet (in her mind) is to make her body hurt. These outbursts don't happen too often but they are painful for me to see. So for tonight, we'll watch an extra episode of Curious George and I'll just snuggle her a little bit longer. Hold her close to me and love her as best I can.

First Time With A Band Aid

I know I posted this on Facebook but I wanted to write this for my own future reference as well as for my blogging friends.

This afternoon when I came home from a quick trip to the city, I found Andrea cuddling a very upset Sarah. We managed to locate the source of her crying... her tiny finger had gotten pinched in our closet door and was bleeding quite profusely. I knew that I needed to cover the little injury but I also knew that it was going to be tough since Sarah's sensory issues would come into play.

Sure enough, it took myself, Andrea and Arianna to hold her still enough to wrap a bandaid around her itty bitty finger. She does NOT like having something like that on her skin. When it was finally on, she continued to cry... for a good 30 minutes. She finally dozed off in my lap for a few minutes and when she woke up, she was in a slightly better frame of mind... enough to at least ask to watch Blue's Clues.

Although the rest of the day went smoothly, she still refuses to use her hand. She won't eat with it, hold a cup or even let me touch it. When I even mention that we can take it off, she flips out. Poor girl. I'm not entirely surprised by her reaction since she doesn't like her hair done, jewellery or anything else that's 'extra' and if an earring falls out it's quite a big deal to get it back in.

I know it's part of the SPD and so it's just something that we'll have to work on with her. And maybe just hope that she doesn't fall too much this summer!

This is how she's held her hand most of the day.