Well, it's been over two years since our last post. Way too long. Linda and I were chatting about how life has been getting busier and busier and how the girls are getting bigger and bigger. And as such, we really need and covet the prayers and support of our friends and loved ones. So she suggested that I get back into the blogosphere and start posting updates.
So here it goes...
Life has been incredibly full and blessed with the two. Kaitlyn is growing into an absolutely spunky and spirited little girl. So smart and quick-witted. And quite the little drama queen. I really personally think that she'll make an amazing actress one day. She is quite the ham. And when she feels something. SHE FEELS IT! Oh, man. Cue the waterworks. Haha...
Alicia is absolutely thriving and she's improving in all aspects. Recently on her fifth birthday we were looking back to the photos of her first few days on Earth, and we just marvelled at the journey which the Lord has brought us on.
It almost seems like the child in those photos was some other child and those days in the NICU were a lifetime ago. And yet when we look at those photos, the emotions and memories washed over us afresh.
For those that have been keeping up with us on Facebook, you know that Alicia over the past five years has had several bouts with febrile seizures. For those of you who don't know, febrile seizures are seizures that very young children get sometimes when they have fevers. In essence, their bodies overheat and short-circuit their brains causing nerves to misfire. The first few times this happened, doctors were concerned for Alicia because, well, anytime anyone has any type of seizure it's important to find the reason. So the first few times Alicia had the seizures we spent several days back in the hospital so doctors could run tests and observe her to make sure that the seizures were indeed febrile and nothing more serious. After getting the test results and not finding anything abnormal, and because of her age at the time and the fact that her cousins had a history of having seizures doctors told us it probably wasn't anything too serious. Most kids grow out of having the febrile seizures as they get older and their brains mature.
When Alicia had her fifth birthday we thought we were in the clear. However, about a week ago, Alicia woke up with a temperature higher than normal. It wasn't quite a fever, 36-37 degrees C, so we didn't give her medicine, but Linda, being the good mom she is, was still on alert. We went to church that day, and Linda even brought our thermometer with her so she could keep a watch on Alicia's temperature. I'll admit that I kind of teased her about being a bit over-cautious, but it turns out moms just have a sixth-sense about these types of things.
We got home from church, and Alicia's temperature was still in that warm-but-not-fever range, but we figured she was fine, so we put her down for a nap, and then left Alicia and Kaitlyn in the care of Linda's mom as Linda and I had scheduled to attend a class that afternoon.
It took us about 30 minutes to get to the classroom, and not two minutes after sitting down for class, Linda gets a call from home. Knowing her mom would never call unless there was an emergency, Linda immediately picked up the call and left the classroom. One minute later, she came back and my heart sank into what was a familiar sense of dread. "We have to go. Alicia's having a seizure."
My initial thought was... "Not again."
So we grabbed our stuff, left the classroom and the building and grabbed the first cab we saw and headed back home.
On the way home, we called Linda's mom to get a status update. Alicia was still seizing and we could hear Kaitlyn screaming in the background. We had some seizure and fever medicine on hand from the last time Alicia had a seizure and we tried to describe where it was to Linda's mom so she could administer it to Alicia and hopefully lesson the attack. Lesson learned. While we never hope we need to use the medicine, but we should always inform all caretakers of the whereabouts of the medicine and how to use it.
It took us about 15 minutes to get home, and on the way home we asked Linda's mom to call an ambulance. So pretty much not two minutes after we arrived at home we heard the sirens.
As soon as I got home, I picked Alicia up and held her. By now her left side had been jerking uncontrollably for about 20 minutes. And her fever was up. We asked Mom what had happened and basically, Alicia had woken up from her nap needing to pee. On their way to the bathroom, Mom felt that something was wrong cause Alicia just kind of got weak at the knees and couldn't walk straight. Then she suddenly threw up at which point she started having the seizures.
Linda's mom is amazing. Don't know how she stayed so calm dealing with an elder granddaughter who was seizing all the while trying to calm a frightened younger granddaughter who was crying hysterically. You'll remember our Kaitlyn is quite expressive about her emotions.
While the sirens got louder, Linda found the seizure medicine and we did our best to administer it rectally, however, being our first time using the medicine, we had no idea if we did it right at all. By the time we finished administering the medicine, the ambulance arrived and we climbed in.
It was seriously a scene from a movie, Linda and I climbing into the ambulance, Kaitlyn and grandma standing at the window. Kaitlyn crying hysterically in fear as we drove off. That image will forever be burned into our minds. I hope you parents never have to choose between caring for one sick child or comforting another. It's heartbreaking. So thankful we have the help and support we need at times like this.
We rode in the ambulance and the paramedics did what they could to get Alicia's vitals. "Temperature 38.4." "Blood oxygen... can't get a good read. She's jerking too much." "How long has she been having the seizure?" "Is she responsive?" "Can she look at you?"
The five minute ambulance ride felt like an eternity as we finally pulled up to the all too familiar emergency wing of Alicia's hospital.
We got out of the ambulance, and being seasoned veterans, we went right into our emergency room routine. Linda would go check Alicia in, while I accompanied the gurney and explained to the doctors what happened.
Within 5 minutes nurses had an IV in Alicia and began administering anti-seizure medicine, which helped Alicia to relax. And then gave her fever medicine which lowered her temperature. They then hooked Alicia up to a heart monitor and also took some blood for testing. And then let Alicia rest.
For the next seven hours, Linda and I kept vigil over Alicia in the emergency room and waited. By now we were familiar with the environment and kind of knew what to expect. Basically, doctors would run some tests and would want to observe Alicia to see if her fever or seizures returned. If not, we hoped we could go home.
Thankfully, at around 8:00 that evening, after running some tests, the doctor cleared Alicia to be discharged and we could go home. Hallelujah. No drawn-out hospital stay this time.
We scheduled a followup appointment with Alicia's paediatric neurologist and then we went home.
I thought, like the past, that we were in the clear. I mean it was just a febrile seizure, right? She'll out grow it.
Well ... and here comes the actual point of this post, we took Alicia in to see her neurologist yesterday. After looking at her charts, he began to deliver his prognosis.
"I'm concerned," he said. "This is already the fifth seizure that Alicia has had. Owing to the fact that she's now older and should be over these seizures by now. And also the fact that her seizures are only on side of her body. And that her seizures are usually over 15 minutes long. I'm concerned."
Have you ever watched a movie and as the ominous music grew louder, a sense of dread started growing in you? That's how it felt except it wasn't a movie. It was my daughter's life.
I watched Alicia as the doctor spoke about her, and while I don't think she understood what the doctor was saying, I could tell she could feel that something was up. So I grabbed her and just had her sit on my lap and held her tightly while the doctor spoke.
"I can't say 100% for certain. I will want to run some tests before deciding. But my guess is that she will probably need to go on medicine to help keep her nervous system in check. And to minimize the chance of these seizures." Why do doctors speak in such absolute terms? It felt to me like he was handing out a life sentence. And I could start feeling a sense of dread creep up in my heart.
But then as quickly as the dread started to grow, a new thought entered into my mind. While I absolutely respect doctors and am so appreciative of their expertise and professionalism. They are NOT God. And regardless of how you feel about the existence of God, you cannot deny that doctors are not perfect. None of us are. And when doctors offer their prognosis, it is not fact. It is at best, their guess and opinion as to what will happen in the future. Calling a doctor's prognosis a "guess" kind of makes it sound trivial and that's not my intention. What I mean is that it's a conjecture. No one can predict the future with absolute certainty. They can only give an educated guess.
So I realised then and there in the examination room that I could partner with fear and partner with anxiety and start to worry over my child's health, and the potential of her needing to take medicine for the rest of her life. Or I could start to pray and I could hand over my anxiety and my child over to the God who knew Alicia better than anyone. The God who created her. The God who has amazing plans of her.
And I felt a wall go up. Not a wall in the sense that I was rejecting what the doctor said, because that would be stupid. But a wall of protection around my heart, refusing to allow what he said to cause fear and anxiety. Because, as God reminded me at that moment, we'd been through all this with Alicia before.
When she was born, doctors told us, "Prepare your heart. She's weak. She probably won't make it past this week." Then when she did, they said, "She's got brain damage. She probably won't walk or talk." Well, guess what. She is.
One thing I've noticed is about doctors is that they tend to give you the the worst case scenarios, because in a way, they have to. Could you imagine if they said, "Oh, there's nothing to worry about." And then something bad happened? That would be a nightmare for both the patient and the doctor. It's better to say the worse case scenario and then if it turns out good, then everyone's happy.
So basically, that's where we are right now. We've scheduled another EEG for Alicia in the next couple of weeks, where once again she'll need to take some sleep medicine so she can sleep while they monitor her brain activity. Past experience has told us that Alicia really has a hard time relaxing and falling asleep for these tests, so prayers for that would be appreciated.
We will wait to see the results of the tests before the doctor tells us if he's going to put Alicia on medication.
My heart is at peace, because I said earlier, I know that Alicia's life is in God's hands. And we've had promise after promise that she's going to be fine. And we choose to trust God in this. If in the end she does need medicine, then so be it. But I'm believing that she won't.
Over the past few days God has brought Alicia's life verse to mind over and over.
"I will not die but live, and will proclaim what the LORD has done." Psalm 118:17
Pray with us. I don't know if you believe in the power of prayer. Or if you believe that we have the power to create or destroy with our words. Regardless. Pray. But please pray with a spirit of celebration and thanksgiving. Do not pray out of fear or anxiety.
Thank God for Alicia's health. Thank God that Alicia is alive and thriving and that she is, and is going to continue to improve each and every day.
Thank God, for us, that Alicia will NOT need medication. And that her brain is and will be more and more stable as time goes on.
Celebrate with us the amazing girls that Alicia and Kaitlyn are.
Part of the reason I want to start this blog up again is because one day when Alicia needs to share her story on the world's stage, she's going to need a record of all that God has done.
So Alicia, this is for you!
Know that Mom and Dad are your biggest cheerleaders. And you've got aunties and uncles, brothers and sisters all over the world praying for you and cheering you on.
YOU ARE a WARRIOR PRINCESS.
Probably... You are not only probably going to grow up to be an amazing witness of God's power and grace. You ARE going to grow up to be an amazing witness of God's power and grace. In fact, you already ARE!