Hello! If you are new to this blog, Welcome! Here you will find the story of our family. Our daughter Claire was born with Spina Bifida and Hydrocephalus. Here you will find the story of how we discovered the condition, her birth, most of her surgeries and basically her (and our) life for about a two year span. Then I stopped blogging.
After much prayer and and consideration I've decided to start blogging again, but this time with a purpose behind it. When I became Claire's mom a small seed of compassion was planted in my heart. It has taken some time to grow and mature but now it's time.
I feel a calling on my life to reach out to moms in tough places, especially in the special needs community. My heart yearns to be next to the mom who is receiving devastating news, just holding her hand. My heart breaks thinking about the couple who feels hopeless and ill-equipped; who choose to end the pregnancy instead of embracing it. My husband and I have had tear-filled conversations full of "This is what's breaking my heart" and "There's got to be something we can do".
Well, this is my "something I can do" because I can't do everything. I've started a new blog with a focus on sharing my heart and experiences but also creating community. Because lets face it, special needs or not, community is what has gotten us all through our hardest days. Am I right? I'm still working on it and building it up but please come visit.
*This site will remain active but there will be no new material from this point on.*
It was recently brought to my attention that people are still finding this blog online, and even more surprisingly, reading it! I haven't updated this thing since 2014! Back in 2014 life got busier and I felt like I couldn't keep up with it. I blame my "if I can't do it well then I'm not going to do it at all nature" for this. It's easier to just give up sometimes, isn't it? There have been many times that I've thought of deleting it all together, but...
People, can I declare a "DO OVER" here! I hereby promise to make every attempt to update more regularly. If you want the scoop of what is really going on over here and why we say we are "really busy", then stick around. If not, don't follow. No offense taken.
Here you will find the real, raw and unveiled truth. This is our crazy, unpredictable, hard but amazing life...written from the perspective of Mom.
It's been a little distracting over here at the Wouda house lately, so please forgive me for the very delayed update on Claire. Nathan started JK just a couple of weeks ago and he's absolutely loving it! I have to admit I am too. He's learning so much and making new friends. He even rides the school bus back and forth!
Little Miss Claire has her own stuff going on too. She is now the proud owner of these stinkin' cute AFOs. Can you tell what the design is? That's right... NEMO, DORY, AND SQUIRT! I so appreciate the care and attention to detail that was given to them, it was definitely worth driving 3 hours each way for.
Also, Claire had yet another test done on her bladder back in August. This one was preformed at Sick Kids and was called "Urodynamics". The objective was to analyse in detail what happens in her bladder as it fills up with urine. As you may remember in a previous post, a neurogenic bladder acts very different that perfectly working bladder. You can refresh your memory here.
This test's aim was to observe how much her bladder can hold, the pressure inside as it's filling, and any spasms that occur as it's filling. The procure took about an hour and she had to lay as still as she could in order to get an accurate reading. (Claire ended up watching Netflix on my phone.) The nurse had me insert a special catheter and through that she emptied Claire's bladder. She then set all of the readings to zero and slowly filled up her bladder. The test would be over when she started leaking. I told this nurse that Claire doesn't leak unless she's really full... like if she drank a 250ml sippy cup kinda full!! I don't think she really believed me. Well, Claire never did leak. A 2 year old bladder should hold about 120ml and she stopped filling Claire at 180ml... no leak! I don't think that happens very often because she had to check with the doctor to see if the test need to be redone. It didn't... thank goodness!
The results were this. Claire's bladder actually has low pressure, which was great news. It also stretches easily to accommodate urine which is another good thing. Why doesn't she leak? Probably because it is refluxing into her kidney instead. The urology fellow explained to us that the reflux in itself isn't actually a terrible thing. When it gets infected and refluxes is where we run into trouble, that is why she has the scarring. The plan for now is: keep her medication the same and keep her infection free! He also told us that we needed to be using more laxative because she isn't getting enough and there is a strong correlation between constipation and bladder infections. This was brand new news to us! Never have I heard that before. So we are now trying to get used to that! I'm sure I don't need to spell out what extra laxative equals...
Claire is also going to be getting a toddler wheelchair soon! I know I've told many people this for months now... many are probably thinking " yeah, yeah, soon? You got that news a long time ago and still no chair!" Please understand that "soon" in our world means like within the next 6 months. This stuff takes time. There's paperwork and funding, measurement taking, testing, ordering, then delivery. Each of these steps often occur during separate appointments weeks apart. It's coming... soon!
Here we go! I'm about to recap the happenings of our visit to the Spina Bifida Clinic on Friday (July 25th). It was an afternoon chalk full of news and information, both exciting and disheartening. Please bear with me as I try to even still process it all as I write this post...
Tests, tests and more tests. It seems to never end! At the clinic she was scheduled to have more pictures taken of her kidneys for the Urologist to assess. Claire ended up having the standard and routine ultrasound and a VCUG, which she had never had before. We were kind of surprised that they had ordered a VCUG because she had just had a DMSA two weeks ago. We went ahead with it knowing Claire's body was in knowledgeable and trustworthy hands. We now know why they did the VCUG and before I tell you the results I will explain the purpose. The DMSA that she had done was to measure how well the kidneys were functioning and to be able to clearly see any scarring. The VCUG was to see what the bladder likes to do with her urine. They got me to empty her bladder with a catheter and then using the same catheter they pumped in liquid until the bladder was full. They were taking pictures the whole time, looking to see where the liquid would go.
Not the greatest news...
And the results are in! So the DMSA showed that her left kidney is significantly scarred. This is causing the kidneys, which are supposed to share the load at 50/50, to work 30/70. A little background info; Claire has always been dry between her caths, which we thought was a good thing. Her VCUG showed a lot of reflux of urine into her left kidney. All the urine that should be leaking out between caths is being directed back up. This is what is causing all the scarring. Why would her body do that? Good question! This is how it was explained to us...
When there is a spinal cord injury the signals that tell the bladder and bowels what to do get all mixed up and/or don't get delivered. When the bowels are not getting the signals they say to themselves, "I'm not getting any signals so I'm not going to do anything at all." This is why we give Claire a laxative everyday, to prevent constipation. The bladder, however, says to itself, "I'm not getting any signals, so I'm going to FREAK OUT!" This sends the bladder into spasms, causing most people with Spina Bifida to struggle with incontinence. So in Claire's case, the spasms are squirting the urine upward instead of downward.
So what now? Thankfully, we live in a country where we can ask that question! The Urologist has upped her dose of Oxybutynin (Ditropan), which is an anti-spasmodic, from 0.5 ml twice daily to 2 ml three times daily. We are praying this will do the trick. She is being sent to Sick Kids sometime in the next month to have another test done to determine where we go from here. This test is called a Urodynamic test and it will look at and measure when her bladder spasms and what it is doing when it spasms. Further steps include Botox injections into her bladder to relax it.
This news is definitely disheartening and if I let myself dwell on it, it doesn't result in anything good. We just have to trust that God Almighty has this trial under control.
Philippians 4:6 says "Do not be anxious about anything but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus." This is how we got through Claire's diagnosis, birth, shunt revision, multiple shunt scares and UTIs. This is how we are going to get through this too.
Speaking of UTIs... Claire will be starting a daily dose of antibiotics (referred to as prophylactics) to help prevent them. This is especially critical until we get the reflux under control, as any UTI/Bladder infection instantly becomes a Kidney infection because of the reflux. This explains why she gets so sick, so quickly!
On a lighter note!
Claire got fitted for her new AFOs! What did we choose as a design? You'll just have to wait and see!!
AND! It looks like Claire's going to be getting a wheelchair soon! The Physiotherapist and Occupational therapist at Bloorview agree that it is time! We just need to get our local Physiotherapist on board, which I don't think will be difficult, and we're golden. We are very excited for this next step for Claire. She deserves to be at eye level with her peers and to be able to move quickly outside of the home. In preparation, we have the paperwork now all filled out and ready to submit for a handicapped parking permit!
This is our happy news! As we move forward, we cannot but help looking back to see just how far we've come, as individuals and as a family. Jesus deserves all the credit for that!
We very often get asked the question, "How's she doing?". We love that you all are concerned with Claire's progress and we are delighted to be able to report that she is progressing extremely well. We had a long day Friday (July 18th) in Toronto visiting with a couple of her specialists and we are very excited about their observations and recommendations!
The DMSA kidney test
Back in December at clinic Claire's ultrasound showed what looked like a scar on one of her kidneys. The Urologist recommended that Claire have a test called a DMSA to look at the function of her kidneys and confirm the scar.
We needed to go to Sick Kids for this test. They injected a small about of radioactive dye into the vein in her arm, this would make it's way down to her kidneys so they would be able to take clear pictures of them. It was such a proud moment for me as a mom to see my stoic little girl not even wince when they injected the dye.
We had 2 hours to kill before they needed to take the pictures so we enjoyed walking around the Eaton Centre for a while and had a early lunch.
The pictures were taken with a Gamma Camera and took about an hour to complete. She did so well with this too; she got to watch some Super Why and take a short nap. We will get the results from this test on Friday when we go back to Bloorview to see her Urologist.
Ambulatory care nurse and Physiotherapy
Our afternoon was spent at Holland Bloorview seeing two of Claire's specialists there. The first specialist we saw was the ambulatory nurse, Julia Lyons. We talked about a plethora of things concerning Claire and her conditions; much of which I won't bother mentioning because although it is valuable information to us, it probably wouldn't be very interesting to you.
On Friday July 11th Claire, Josh and I headed down to Toronto to Sick Kids for Claire's annual Neurosurgery Check-Up. Claire was scheduled to have a CT scan done under General Anesthetic. Why would she need a CT scan if she is well, you ask? Good question! The answer is, we need to have a picture of her brain while she is healthy and her shunt is working properly so it will be easier to diagnose a problem in the future, if and when her shunt fails again. They needed to put her under because they need her to be super still during the scan...good luck getting a 2 year old to do that, especially when they're scared.
We left at 5am for Toronto as her appointment was at 8am. It was brutally early but we were thankful because Claire needed to be NPO (latin term meaning "nothing by mouth") for the anesthetic. She was such a trooper! You couldn't even tell she hadn't eaten anything since the day before.
In typical Sick Kids fashion everyone we interacted with did their best to make Claire and us as comfortable and "in the know" as possible. They let Claire play with a mask that smelt like strawberries and a giant monkey, so that she could get acquainted with what was about to happen. They decided they didn't need to do an IV general anesthetic because the scan is only 5 minutes in length, a "Gas and Go" would be sufficient! What a relief!!
Claire had her 10 minute "nap" and woke up happy and hungry. After a quick breakfast we visited with Dr. Taylor, Claire's Neurosurgeon. He gave us our usual "signs and symptoms quiz", like I ever have a day when I don't think about those symptoms. Needless to say, we passed. We also brought up our concern about Claire's complaints about back pain. He told us to watch the frequency of the pain as it is a symptom of something called "Tethered Cord". Tethered cord occurs when the spinal cord gets caught up in scar tissue. The symptoms of this are back pain, loss of function and a lot of bladder infections. He told us there was no use in having an MRI done unless the symptoms get worse because 100% of people with Spina Bifida have a tethered cord on an MRI, it a symptomatic tethered cord we're worried about.
Let's add that to the list of symptoms to watch for...
If it's not one thing, it's another... that seems to be the story of our family. I'm almost certain it's the story in yours as well. Just as soon as you think you have put out that fire, while the ashes are still smouldering, a new fire ignites! This is why I haven't been posting as much lately. Since March it's been one small (or large) "fire" after another.
In March Claire developed a case of croup. Finally, we got to go to the ER for something other than a shunt malfunction or UTI! (Please don't interpret that statement as excitement.) Two Ventalin treatments and a dose of Adrenaline later she was "stable" enough to come home. While the ashes of that fire smouldered....
I became PREGNANT! Yes, we were trying. Yes, we were very excited... Were... Just days after this photo I began cramping, then bleeding, and lost the baby. Absolutely. Heartbreaking. I understand why the first question asked is, "How far along were you". And the answer of "4.5 weeks", doesn't make it any less painful than if it had been "12 weeks". We lost our third child. He/she is in the arms of Jesus right now. I don't want to bury this experience under the blanket of secrecy, I want it to be known in order to honour and value their little life. I can now say, "I get it" when it comes to miscarriage. While we recovered from that blaze...
Life carried on. It had to. It was time to be thankful and celebrate, so we looked forward to planning for our trip to Lynchberg Virginia. My sister graduated with a Masters in Media and Communication studies from Liberty University. We are so, so, SO proud of her. It was a really fun trip, tiring, but fun! We went on multiple plane rides, enjoyed warmer weather and got to see exactly where she spent the last 6 years of her life! When we returned...
It was time to celebrate... again. Josh's sister got married! Then, Josh's brother got married! Then...
Claire turned TWO!!! Yesterday, June 13th. How did that happen? To mark this momentous occasion Claire got sick! Yup, another fire to put out. She spent her birthday with high fevers, lethargy and vomiting... what we are treating as, yet another, UTI. Thankfully, we had antibiotics on hand for such a time as this. I just had to bring her urine to the lab to be cultured to confirm it. Even though we started antibiotics promptly she is still quite ill today. Oh, and to top it off she's cutting a two-year molar so she drooling like a dog. Poor pumpkin... so much for having a birthday weekend. I wonder what's next?
Happy Birthday, my sweet girl!
Holy Moley! I can't believe it's been months since I've posted anything on here. Time has been literally flying by and the days and weeks seem to be one big blur.
The kids. They are growing up way to quickly. Claire is starting to look giant in her crib and Nathan...glup...starts school in September! He is really excited about going on the school bus and playing with the toys. It's very cute. I am having a hard time with the whole "letting go" idea, but I know this is all part of the process and it'll be so good for him.
Claire is doing well. Aside from a case of croup and a UTI she had in the same week a few weeks ago, she's been healthy! Every night we pray that she will continue to be healthy and that her shunt will continue to work, knowing that tomorrow could be a very different day. Thank you to all who continue to hold my little girl up in prayer!
Claire has been working really hard learning how to use her training wheelchair, aka 'castor cart'. She can maneuver it perfectly now, which is really exciting. She is getting really heavy to carry on my hip, so we are hoping she starts to like it and use it more.
Josh and I are doing well. We are both busy doing what we do and this spring and summer seem to be no exception. With renovations, long distance trips, weddings, kids birthdays and an anniversary... This summer promises to be a fast one.
It is easy to get overwhelmed with it all when we step back and look at the big picture. Isn't that the case for most things? I am slowly learning that I get the most joy out of the life I've been given, when I just look at today. When I live my life today, focus on my attitude today, teach my kids lessons for today and enjoy being with my family today. My family. They are what's most important.
Look at these funny little munchkins! They are truly hilarious. I wish I could capture their funny little expressions and cute saying and put them in a bottle to enjoy for the rest of my life. I'd like to share some of this week's funny moments, I hope it brings a smile to your face. Enjoy!
While getting dressed Tuesday morning Nathan wanted to choose which shirt he would wear. He picks one with the logo of my brother and sister's university on it. His favourite part of this shirt is the eagle mascot. Nathan declares, "I gonna wear my eagle shirt and show my friends at Early Years. That going to make them so much happy! Kids love eagles!"
Yesterday, Nathan wore a shirt that said "My Dad Rocks" on it with a guitar underneath. Nathan was very pleased with this shirt and throughout the day he would look at me and point to the words while "reading" My-Dad-ROCKS. At one point in the day he was again reading his shirt, telling me, "My dad rocks. My shirt says, my dad rocks." I told him, "Ya. You should show Dad that when he gets home." Nathan replies, "That would make him so much happy! My dad rocks. My dad loves rocks! They outside."
The other morning in the chaos of cleaning up breakfast and getting out of the house in time for an appointment, I caught Nathan growling in the face of his sister. He was clearly agitated and ready to hurt her. I pulled him aside and talked with him about him being kind to his sister, I concluded this little speech by saying "Choose to do what's right, my love." He excitedly skips away and says, "Okay. Good luck!" My thoughts exactly.
Just before lunch today, I walk into Nathan's room to find the kids happily playing... which was surprise #1. Surprise #2 was that Claire had been transformed into Mrs. Potato Head!
Happy Friday everyone!!
"How are you doing?"
"How are you really doing?" I was asked this the other day and it kind of caught me off guard. I hadn't been asked this question by someone who was looking for more than a "fine" in a long time. At first I didn't really know what to say. I stumbled through an answer, as I searched for the words to accurately describe the complex thought patterns and emotions that run through my mind daily. It got me thinking...
Is it okay to not be okay?
We are so private in our North American culture that anything more than "fine" or "good" as a response is surprising. When we leave the house we are expected to have our "happy face" masks on, so to speak. Anything less is either unnoticed or ignored.
As a culture, how did we get here? When did we decide that hiding our wounds was beneficial?
Do we hide because of pride? Fear of vulnerability? Denial that there is even a problem?
Whatever the reason. It's sad. We are supposed to be doing life together! And I'm just as guilty as the next in arrogantly thinking, "I can do this on my own". I hide secrets. I camouflage pain with laughter. I push God aside and plan my way out of a problem in the middle of the night, then wonder why I struggle with insomnia. It's pitiful and I want it to change. In order for it to change, I need to let down my guard and speak the truth.
The truth about living with Spina Bifida.
Our life has a lot of love and joy but there are a lot of parts that just...plain...suck.
There is an element of pain when I see Claire's peers running around. There is jealousy and anger when I hear other mothers complaining about their insignificant (to me, not them) parenting problems. I sometimes physically bite my tongue to stop from screaming at them, "Walk a day in my shoes. Then try complaining about how much work your three beautiful and healthy girls are."
When I look at my daughter my heart feels like it will burst with love. Then I get sad as I wonder if the world will love her and see her value like I do. I fear the day Claire comes home from school and with tears tells me the kids didn't want to play with her at recess. My heart breaks as I see her in my mind's eye rolling around the playground by herself. How much rejection will this little one face? As I look into her crystal blue glistening eyes, what will I tell her?
I often wonder if she will ever feel the unconditional love of a spouse. Will her Daddy ever have the pleasure of "walking" his little girl down the aisle? I know marriage isn't necessary in life, but really, who wants to be alone?
It sucks having to plan my day around catheterizations and having to worry about Claire's kidney health as she sleeps. And, it sounds stupid, but I hate boiling catheters every night. It's just one of those tasks that I loathe.
As I write this I am already considering hitting the delete button for fear of being thought of as a complainer. I don't usually complain. I'm very good at just sucking it up. The load does get heavy though. I do need people around me. I do need their prayers. I do need their support.
It is okay not to be okay, it's just not okay for it to stay that way.
The Wouda Four
Who are we? The answer is, clearly ordinary people. My name is Amberly and I am a Stay-at-Home Mom. My husband's name is Josh and he's a carpenter. We have two children, Nathan is 4 and Claire is 2. We live in a small town called Huntsville, Ontario, Canada. We attend Harvest Bible Chapel Muskoka and love and follow Jesus, believing he his the one true God. We also believe God created our little Claire-bear to be out of the ordinary for a specific purpose, to show just how great and loving God is. Our life will likely look a little different to you, but that's what makes it uniquely beautiful!