The Brilliant Mind of Alicia

 It's been eight years since my last post. I'm not sure if anyone still reads this blog, but I wanted to record something that happened today, so I figured I'd create an entry.

So quick update. Alicia is now 13. Sometimes I really marvel at how fast time seems to be flying by. I often think back to our eary days in the NICU and am amazed at how far we've come. Alicia is continuing to grow and mature, albeit maybe not as fast as I or Linda would like. But from the very beginning, one thing we've learned with Alicia is that she has her own timing for things. There is no use trying to force or rush anything as, we can't change how fast she grows physical, or learns cognitively, or matures emotionally, we can only accompany her and support her and do our best to guide her. 

So onto what happened today. 

Today is Wednesday. On Wednesdays Alicia has therapy in the morning and in the afternoon. Over the past year, we've been trying to train her to be more independent. As such, we've worked out a deal with our father-in-law. He would accompany her to the therapy sessions. But rather than have him come all the way out to our house to pick her up and then come all the way back to drop her off, we've been training her to take the bus on her own. For the most part things go off without a hitch. I'm constantly pleasantly surprised by how she is able to keep track of bus routes and bus stops, and where to get on and off. I'll be honest, knowing that medically speaking she has CP, and observing that in terms of academics she has trouble with comprehension and retention, I'm always amazed at how she can remember very specific things like dates, schedules, and bus routes. It's like for academics, her brain has a hard time processing. Like a computer with shotty WiFi. But then for other things she's incredibly intelligent and her brain is like a supercomputer.

OK so back to what happened today. We recently moved back into our apartment after 8 months of renovation. It's been a week of unpacking, organizing and cleaning. Today, Linda had to go back to the rental that we stayed at to clean it up and prep it to return back to our landlord. As such, I was in charge of getting Alicia to the bus stop so she could head to therapy and meet her grandpa. Well, as I don't usually take the bus, I am clueless as to which bus goes where. Knowing that Alicia is usually very clean on those things, I rely on her. So I get her to the bus stop, and there's a bus there the 902, that I think goes in the general direction of the therapist. I double check with Alicia if that bus goes to the clinic, and she says, yes. So I put Alicia on the bus and step away to call my father-in-law to let him know that Alicia is coming. 

When I call him to tell him she's on her way. He tells me not to worry, he's already at the clinic waiting for her. To which I respond, wait, no, I think she thinks you're waiting for her at the bus stop. So he's like, OK I'll go and find her. I hang up with him, and call Linda to confirm whether Alicia is supposed to meet grandpa at the clinic or the bus stop. She says, the bus stop. So I'm like oh, then I better call him back and let him know. The reason I'm going into the details of all these calls is to let you know how much time has passed between Alicia riding off on the bus, and what happens next. 

So once I get the confirmation from Linda, I call my father-in-law back and tell him not to go to the bus stop, Alicia is going to meet him at the clinic. He says, no worries, he's already at the bus stop waiting. I said, OK, great and reiterate that I put her on the 902 and she should be arriving soon. He clarifies and says, "Red 2?" I said, no, 902. And that's when my father-in-law went into a panic. He said, the 902? The 902 doesn't go to the clinic! You can imagine my anxiety when I hear that. I just sent my daughter onto a bus going to who knows where. And she has no phone, so I have no way of contacting her. 

I quickly tell my father-in-law not to worry, and I'll get on my scooter and chase after the bus if I have to. So I run back home which is like a 5 minute walk. Five minutes is not a long time, except when you realize that your daughter is on a bus heading in the wrong direction and you have no way of contacting her. In my head, I'm imagining that Alicia is starting to get worried as she realizes she's on the wrong bus and I'm trying to figure out how in the world, I'm going to figure out where her bus is and how I'm going to catch up to it. 

I finally get to my scooter, and I grab her and my helmet, and I just zoom off (well, as fast as I can, I need to observe the speed limit after all). At first, I just head in the general direction of where the bus is headed. And I stop for a brief moment at the bus stop right after our bus stop to see if the 902 passes by there. I couldn't see any signs, so I just decided to keep going. After a few more minutes of aimless driving, I tried to find the bus route on my phone, and to see if any of the public transport apps have a live GPS of where the buses are. Thankfully, I found one that did. But then I also saw that there were multiple buses traveling along the same route at the same time, and I have no idea which bus Alicia is on. 

Now I'm full on anxiety trying to figure out how in the world I'm going to find Alicia, and I just imagine her getting to the bus dept and she's the only one left on the bus, with no way of contacting me, and she's just out in Taipei on her own. At this time, I decide that I better call Linda and ask her to pray. I tell Linda what happened and she's trying to stay calm, but I can tell she's worried, too. I just ask her to keep praying and I will just continue my search. 

Before driving off, I decide I better call my FIL to tell him to go home and I will contact him when I find Alicia so he's not just standing out in the hot sun at the bus stop. Well, when I call him, he says very calmly, Alicia is right here next to him. It honestly felt like a weight lifted from my shoulders. I said, wait what? Alicia is there? He said, yes, she's arrived safe and sound. I of course still coming down from my anxiety shot out, well why didn't you call me then? I was really worried. He said, Well, I don't know what you guys did. She took got off the 267 and we walked to the clinic together. 

I was really confused, and seriously thought that I was going crazy. I could have sworn that I sent Alicia on the 902 bus, I could see the bus number in my head. How did she end up on the 267? Did I remember the number wrong? Or did God perform a miracle and transfer her from 902 to the 267?

Well, knowing that she was safe, I breathed a sigh of relief and went home to take care of our other two girls. 

When Alicia got home later in the afternoon, I asked her what happened. And this is the part that absolutely astounded me and encouraged me and just made so incredibly proud of Alicia and so grateful to God. 

So Alicia, when she got on the bus, realized, ON HER OWN, that the 902 was the wrong bus. And ON HER OWN very calmly got off at the next stop and waited for the correct bus, transferred to that bus, and then arrived safely at the clinic. I don't know if you understand what a miracle that is. I mean for the average adult, being able to figure out a bus route, and how to transfer and get to the right place on the right route is complicated enough. But for a 13-year-old girl with CP, the fact that she was able to do that seamlessly I was completely flabbergasted. The funny thing is remember when I said that I stopped at the first bus stop to check if the 902 passed by, she told me she saw me drive by the bus stop. I think I was so anxiety ridden at that time that I didn't even notice her. 

I just felt like it was a huge encouragement for Linda and I that she's doing OK, and she's going to be OK in the future. She is slowly growing to become more and more independent. And she will be able to take care of herself one day. I think in the back of Linda and my mind, we're always wondering if we're going to be caring for her for the rest of her life. But seriously, our girl is SO SO SO intelligent! And I'm reminded again of the countless prophecies and encouragements we've received about Alicia that she will be fine! 

Phew. God is GOOD!

At the End of 2016...

Dear Family and Friends,

It's Linda. I have lots to share with you. I wish I can share more these daily and sacred moments but sometimes in the busy-ness of life, I would forget or had already moved onto the next task. It is literally God who is reminding me to blog right now. And to DO IT NOW.

God is wanting me to write because we need to update you all, but honestly, it's more for me to remember how far we have come this year (these years) and to just stop and relish. I am so thankful.

The girls have been blooming, thriving, growing, running, and I am amazed.

2016 marks a dramatic upturn in Alicia's vocal skills. I am overcome at Alicia's speech development. The daily repeating the same phrases have finally kicked in and she is talking more and more. She is still learning and sometimes her words sounds so mumbled and jumbled together that it takes the Holy Spirit to translate for me. But her speech is improving every day. As I reflect more, I found it's more me that God is working on... to teach me to slow down and to truly listen to her. She has a lot to say.

A few months ago, her speech therapist said to my dad who in turn shared with me that he was working with Alicia to speak 3 words in a row. The therapist said she still wasn't good at saying 3 words at a time. But I think I have heard her say more than just 3 words before. Then one day soon after that report, Alicia came home and pointed to the mess that Kaitlyn had left behind, and said "Meimei, 亂七八糟" (what a mess!)... I think I just counted her saying 6 words in a row!! I rejoiced!

Currently, Alicia is attending a special education class in a public kindergarten. Her teachers are wonderful blessings to us. We appreciate their perspective and attitude of teaching Alicia. And under their care, she goes to school with the biggest smile. That just brings such joy to my mama's heart. What a gift this school has been to us!

The biggest goal we are working with her right now is to prepare her to attend 1st grade next year. Right now, we have a few options of where to place her. Two main ones. One, is to keep her in the special education class where it is more isolated from mainstream students. She will be with two special ed teachers. Another option, is for her attend mainstream class and for specific subjects, a specialized teacher will pull her out for more one-on-one or smaller class setting to work with her. Right now, I am applying her to be in the second option. I am not going to sugar-coat it. It's a steep climb. She has to prepare to be even more independent. She has to work on her physical endurance and strength. She has to improve on speaking up even more and expressing herself and her needs.

In my meeting with her current teachers, they asked me what is the goal her father and I have for Alicia. I said for her to thrive well and be independent. For her to be the blessing she is, to the full potential that God has given her~ whatever that looks like. Alicia is normal. Her normal and her story isn't like what everyone else's but that is still normal. I don't want her to be isolated. I want her to see more of the world and I want the world to see her. Because her growth and potential will only increase if she walks out of her comfort zone and we all will be so blessed because of knowing her. But I have to be honest, there are so many times, I just want to hold her and protect her from whatever harm I may fear is out there in the world. Then God reminds me that He is holding her. I cannot and do not need to watch her 24 hrs a day. She is thriving and growing well.

Campbell often wisely reminds me that what I am doing for Alicia, I need to do for Kaitlyn. I will be honest; it's easier to look over KK only because it seems like it just comes so effortlessly for her. She's speaking more words every HOUR. She's curious, observant and brilliant. She loves going out. She still gets shy with people she doesn't know well but she has such an amazing memory. She would be talking to me about things that happened or places she has gone when she was a baby and couldn't talk yet. It is so incredible to me. Right now, she is learning how to play with Alicia. Her version of playing with her sister is to just take Alicia's things... which doesn't go well with Alicia. But they are making improvements; at least KK doesn't bite anymore... We are learning. KK also loves "cooking" and making me eat what she cooks. She likes to steal my makeup and lotions and which she would then stand in front of the mirror and put them on her face like she sees me doing.  Kaitlyn is a feeler. Her laugh is contagious and the spirit of JOY is over her. I love hearing her laugh with Alicia and Alicia loves KK. She thinks KK is so funny. I quote my mom, "Kaitlyn 不會吃虧". Kaitlyn will not be denied. She goes for it. She gets want she wants. She says what she feels. So we are encouraging her strengths and teaching how to use her giftings well.

But Campbell is right. I have been praying a lot for these two girls. I ask God for wisdom to know how to pursue these girls' hearts. God told me that for the most part this past season has been so much about their physical needs. To make sure they eat, they sleep, they are clean... but now I sense there is a new season taking place in their lives... Now, it's more than just physical. It's about their mental, spiritual, emotional, social development. And I want to madly pursue their hearts and make sure they know how much they are loved as we are instructing and parenting them. This is so crucial. For Campbell and I, it's not just about raising them to do what is right. It's not about correcting their behaviors. It's about who they are. Do they know who they are? Do they know what is true? Do they know how to think for themselves? And all of that starts now. That knowing of who they are, what is true starts with knowing they are unconditionally, completely, wholly, loved.

So this is my 2016 lesson. Everything in my life that is worthy of my time takes my whole heart's intention. I am not going to figure out how to love well, parent well, manage my health, family, finances and future just by winging it. I need to be intentional. I commit myself to God. I ask Him for wisdom. Then I move into action. I seek and ask for wisdom. I ask questions and go find answers. I don't understand a lot so I need to find solutions.

Please keep praying with us:
1. For Campbell and I to fully walk and run with the Holy Spirit as this new season starts. Our hearts are to position ourselves ready for whatever He calls us into.
2. For Alicia to gain confidence in herself, in her skills. For her to continue to accelerate even more and faster. For her to encounter God in her sleep, during the day.
3. For Kaitlyn to grow and prosper as a 2 year old, for her to know her Heavenly Father's heart.

There are more but as I write, I am losing track already! SO I am going to end this post for now and continue as the Lord leads.

LOVE and PEACE! Merry Christmas!!!

Probably...

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!

Two

We are the parents of two daughters. Wow. Amazing. I don't think my mind has completely wrapped around the fact that we now have two children rather than one. Two little ones who bear our DNA and will call us Mom and Dad. Whoa.

So, praise God. Kaitlyn Hannah Chang has arrived safe and sound into this world. And I don't know whether it is because my children share their parent's flare for the dramatic, but it seems that both of our children feel the need to enter the world in a very unique and definitive way with enough twists and turns to be their own soap opera or reality TV show.

As I shared in my last post, Linda and I were woken up at 5:00 a.m. to begin the prep process for surgery. About 7:30 a nurse showed up to our room with a wheel chair and helped Linda into it. By 7:45, before I knew what was happening, we were on our way to the delivery room.

I followed behind the wheelchair in an excitement-filled daze, hardly believing we were about to undergo a procedure that would bring our second daughter into the world. We get to the delivery room area, and huge steel doors slide open allowing us into the ward. Next we enter a smaller room and the orderly who was wheeling Linda, pushes her into a special quarantined area for deliveries, and I start to follow only to be told sternly that I couldn't enter yet, and to wait outside while they asked Linda some survey questions and prepped her for surgery.

At that moment another sliding door with a glass window slid shut separating Linda and I. All I could do was stand by helplessly unable to communicate with Linda in any way. A few minutes later, the sliding doors slid open and I was able to shout, "Linda, Jia You!" (which is something we say in Chinese when we want to encourage someone to "Hang in there and press on.") It was then that Linda realized I wasn't with her, and she asked me, "Aren't you coming in?" I told her I couldn't right then, but I would be in as soon as they let me. And then the doors slid closed, once again separating me and my wife.

It was then that I realized that I had been sidelined. It's ironic that I wrote in my previous post about my complete obsolescence in this whole child-birth process. Never was it more evident than in that moment segregated from my wife by a heavy steel door with a window.

Well, I stood outside the door for about 30 minutes while they prepped Linda for surgery. And I was just buzzing with excitement. Our daughter was coming, and I was going to be able to be there to witness her arrival. Could this be happening? Wow.

During the waiting process they brought me some scrubs and a surgery cap to put on, so I would be clean enough for the operating room. After what seemed like forever, the door finally opened and a nurse intern ushered me into the operating room.

There I saw my wife laid out like a science experiment, with green sheets covering her entire body except for a rectangular patch exposing her stomach. I was quickly informed the path of which I was allowed to walk, shown my seat and told that I was not allowed under ANY circumstances to touch anything other than my wife's hand.

Once I sat down, the procedure began. I held onto my cellphone, ready to capture the moment that Kaitlyn's head emerged. From my position, I couldn't see too much, only the doctor and nurses working on Linda. I tried as hard as I could to crane my neck to get a better view inside the abdomen, (I know, weird, but I was really curious) I couldn't see anything.

The procedure started out pretty smooth, but then the next thing I know, the doctor starts slowing down, and I hear her making comments about blood vessels, and a lot of things being stuck together and that this procedure was going to take a bit longer than expected. The doctor would work a bit, and then she'd look, and then I'd see this look of concern followed by a look of determination. It took about 20 minutes for the doctor to finally get down to the uterus in order to get Kaitlyn out. Just as I was wondering how much longer it would take, the activity began to pick up.

Again, I couldn't see anything, so I can only guess that the doctor finally was able to get down into the uterus and it was time for baby to come up. I looked down for a second to get my phone ready, and next thing I know when I look up, I see baby's head. A tug and a pull, then the baby's whole body is out. And then I hear for the first time, the sweet cry of my baby girl.

It's so funny, first thing I check as I did with Alicia as well, was to see if indeed she was a girl, and well, yes. She was. haha...

But man, so much bigger (naturally) than Alicia when she came out. And a good set of lungs. It was amazing to watch Kaitlyn get cleaned up, and see her turn from greyish blue, to pinkish red as she sucked more and more oxygen into her body.

My first instinct as a Dad when I heard her crying was to try to calm her down, but then I remembered that the crying is good, it's her taking her first few gasps of air. So I let her cry, but I started to talking to her, and you know the most amazing thing is that when she heard my voice, she stopped crying and started listening as if, "Hey, I know that voice."

At first, I hadn't noticed that she had stopped crying in response to my voice, only that she had stopped crying. It was only in reflection that I realized, hey, she knows me. Again, amazing.

It was at this point that I realized that I was focusing entirely way too much on Kaitlyn and not on my wife who was still on the operating table. So I turned to walk back over to Linda, at which point I was scolded and told not to approach and to stay where I was. So I froze in my tracks, turned around and went back to Kaitlyn. 

Once Kaitlyn was cleaned up a bit, they weighed her. And that's another funny story in an of itself. I was so chocked up on adrenaline that when they weighed her and announced her weight, it completely didn't register what they were saying. I heard the weight, I saw the number, but by the time I got out of the operating room, I completely forgot everything.

Next was another beautiful moment. They took Kaitlyn and carried her over to Linda so mother and daughter could meet for the first time. Kaitlyn by now was crying at the top of her tiny lungs because she was not happy being removed from her comfortable palace. But the moment they brought Kaitlyn close to Linda, and she heard Linda's voice, she completely got soft and calmed down. Her eyes were completely closed, but she found Linda's nose and rested her long slender fingers on it. It was a sweet moment as baby and momma bonded.

Soon, though, it was time for baby to get wrapped up and sent over to the nursery for final check up and a bath. But before we wrapped her up, doctor had me go over wither her all of Kaitlyn's extremities and appendages. Two ears, ten fingers, ten toes, definitely girl, etc... Once we checked that Kaitlyn physically was OK, the doctor wrapped her up, and then miracles of miracles, I got to hold Kaitlyn for the first time and actually carry her out of the delivery room.

With Alicia we had to wait a couple months before we were allowed to hold her and cradle her, but Kaitlyn it was within minutes. Amazing.

God is so good. Baby girl is healthy and alive. There is more to share about our first day post delivery, but this is getting long and it's late. So I will share more later.

But for now, I will just say thank you for all of the love and support that all of you have been sending us from around the world. We really are so grateful that we and our children are so dearly loved.

New Life

Well, it's been almost a year since our last post. And what a year it has been. Alicia has grown so much, and is moving along in her development quite well. And ... oh, yeah. We got pregnant! Actually, that's why I'm here typing again.

Right now, I'm lying in a hospital room, next to my wife who is resting as she prepares for yet another C-section.

Reminds me of the first night that I wrote on this blog, back then I was also in a hospital room, next to my sleeping wife, who had just had an emergency C-section. Crazy how time flies and how life goes on.

We arrived at the hospital last night, and Linda and I were commenting on how the circumstances surrounding this birth are so completely different than Alicia's birth. This time around, we'd known about this C-section for months. Months ago, our doctor told us that because Linda had had the C-section so early last time, if we tried for a vaginal birth after cesarean (VBAC), Linda's risk of uterine rupture during delivery was increased. So our OB-GYN highly recommended another C-section. Well, I don't know if recommended is the right word, more like informed us that we would be having another C-section.

At first, I wasn't sure how I felt about this, because first of all, it meant that we'd be taking baby out several weeks early (37 weeks vs. 40 weeks) and second of all, I still remember the recovery process for Linda from the last C-section. It was quite uncomfortable. So I was really hesitant, and even considered telling our OB-GYN that no, we'd like to try for a VBAC anyway. But after praying and then talking to several of our friends in the medical sphere, and considering the fact that our doctor is a well-known high-risk pregnancy doctor here in Taiwan, and also me not having the first clue on child-birth, we decided that we would go ahead with the scheduled C-section.

So here we are, week 37 and two days. Linda and I were woken up about two hours ago to begin the prep process. (I'll spare you the details.) It's baby day and if all goes well, we'll be meeting our new daughter within two hours. Crazy.

There are so many thoughts running around my head right now. I'll be honest, right before starting this entry, I was researching C-sections and all that entails and doubts started creeping up in my mind again. Perhaps we should have pushed more for the VBAC, maybe we should have asked more questions. But too late now. We're on the train and it's already left the station.

Also, I can't help but feel absolutely 100% useless during this process. I mean other than my early contribution to the life of this child, up to this point I have pretty much not had anything to do with carrying her, nurturing her, incubating her and keeping her healthy. And for the next few hours, I will have nothing to do with her coming out, other than standing by Linda's side and encouraging her. I mean, seriously, for the past 9 months, every ache and pain, every physical change, every sore muscle, every kick, every needle prick, every swollen appendage has been Linda's and Linda's alone. And now, over the next few hours, it will be her who will have to endure the epidural, her who will have to deal with the surgery and her who will have to deal with the recovery.

I feel completely and utterly useless.

So any man, woman or child who ever disrespects a mother (and I'm talking to myself here, too), no offense, but you're acting stupid. I mean these WOMEN are AMAZING! What they have to go through to bring these children into the world - I mean, WOW.

And it's like, I want to have more kids, but how do I dare ask Linda to go through all of this, AGAIN? I mean? Really. It's not something I can ask of her. It would be one thing if I could take the pain and struggle of bringing the child into the world, and do something to help. But seriously, as I said earlier, I pretty much am 100% obsolete in the pregnancy, birthing and recovery process. It's not my body that has to deal with all the changes and discomfort. Ever want to feel useless? Be a husband, awaiting the delivery of your child. Don't get me wrong, this is no self-abasement. I'm not putting myself down. I am just accepting my lot in life (well at least in this process). So as much as I would LOVE to have another kid of my own (yes, I know... let's see how it is with two before opening my mouth and making such a statement), in the end, the decision is completely up to Linda and God.

So gentlemen with wives who have been or who are pregnant. We seriously need to bow down and honor these women as the queens and warriors they are. I mean, they go through a heck-of-a-lot to give life to our children. We best not EVER disrespect them EVER.

So on this day, the birthday of our second daughter, and two days before Mother's Day, I just want to say to ALL the mothers out there, THANK YOU. THANK YOU! May God bless you immensely for all you have done. YOU ARE AMAZING!

712 days...104 weeks... 24 months... 2 years

Happy Birthday Alicia!!

Baby Girl is 2 years old today.  Time sure flies! Hard to believe that two years ago, Linda and I were still recovering from one of the most eventful night of our lives, and our little girl was clinging to life by a thread. Now look at her. So full of life and most importantly she's thriving and improving each and every day.

I still remember clearly doctors telling us that they had no guarantees for us on how long Alicia would be alive. The odds were sorely against her, and if she survived to the end of the week, it would be quite amazing. Back then all we had to cling on to was our faith that Alicia was in God's hands. We kept praying for and proclaiming with all of you health, and life to our little one. Back then there were moments when it felt like we were maybe kidding ourselves. But we clung onto God and his promises. We knew that he would carry us through no matter what. And we believed that Alicia was going to be all right.

And as you can see, today, she's not only OK, she is blossoming into an adorable little girl.

Does she have challenges? Sure. She's a bit behind developmentally, but that's OK. We will continue to take her to therapy and get her the help that she needs. At the same time, we're going to continue what we've been doing since the beginning and continue to cling on to the hope that she is going to be able to live a 100% normal and healthy life with no disabilities or handicaps. We're going to continue to speak life over her and full health. And we ask you to continue to do that with us as well.

A year ago, on the eve of Alicia's first birthday, I wrote about how I look forward to the day when I'll hear her call me Daddy for the first time, and while we're not quite there yet, we're getting there! A couple of weeks ago, she started adding the syllable "ba" to her babbling. Now we just have to help her to associate "ba" with me! =D She is definitely understanding more and more. When we ask her "Where is baba?" she'll look at me. And if I say, "Give it to baba" She'll reach out and give me whatever's in her hand. So she's definitely more aware and interactive, which is an encouraging sign.

Now, on the day of Alicia's birthday, allow me to leave a little message for my baby girl, so that one day when she's older she can read and know what Daddy was thinking on her second birthday.

Dear Precious Baby Girl,

Happy birthday! You are 2 today. You probably have no idea right now what a special day we celebrate today, but in time, and as you get older, you will know. But for now, Mommy and Daddy will just celebrate for you.

Baby girl, you are growing and learning so much. You have your challenges and Mommy and Daddy need to give you some special help, but it is worth it. To see how much you are improving and growing makes Mommy and Daddy's heart smile.

Alicia, I hope you know how much Mommy and Daddy love you. Mommy pours out so much of herself to take care of you. And her heart is continuously wondering what else she can do to help you to grow physically, mentally, spiritually and in every other way. Mommy often exhausts all of her energy in trying to get you to eat, or nap, or just to finish your milk. You are an amazing girl. And overall, you are very well-behaved and cooperative. But little girl, you have to eat and sleep. That's how you'll get bigger, healthier and stronger. One day you'll understand and one day you'll have children of your own. I hope they eat better than you do, but if they don't, then maybe you'll understand the struggle Mommy goes through every day to feed you. Haha.

But Alicia, you are an amazing little girl. Your smile is like a splash of color on a dreary gray canvas, it brightens everything up. I love playing with you and making you laugh. And I love when I hold you and you hold me back, snuggle and bury your face in my chest. You make me feel like I am the biggest coolest superdad in the world.

There are times when I get frustrated and I yell or put you aside, and I am sorry. Daddy is learning, too. I am learning I need to cherish this time I have with you, because you won't be small forever. One day you are going to be all grown up and have a family of your own. And I'm going to have to compete for your time. But for now, your mine and Mommy's and we will continue to cherish the gift that is you.

Daddy and Mommy have a lot of hopes and dreams for you baby girl. But mostly our prayer is that we would train you up in the way that you should go. We want you to have an amazing relationship with God, and know that he has created you and that you have an exciting purpose here on Earth. You almost went back to Heaven early, but God sent here, and I know you have something important to do. And Mommy and Daddy promise that we'll do our best to help you find out what that is, and support you so that you can have every advantage, resource and tool you need to thrive and give God glory while you're alive here on Earth.

Precious girl, you are my treasure.

Love,
Daddy

Missing Something?

Seriously, how do all of you do it? I mean those of you with 2, 3, 4 . . . 19 kids? How do you do it?

How do you do it, while still maintaining your smile, your energy, and most importantly your hair? Alicia is a great kid and all, but seriously, lately, I feel like we're coming apart at the seams.

Those of you who know me well, know I once had a lofty dream of having four, yes, FOUR, kids. I love kids, I reasoned, it'd be fun. MWUAHAHAHA. Lately, I've really started to reconsider. I mean, part of me still hangs onto the hope that by some miracle of God, we get this supernatural stamina, patience and energy to handle four little kiddies running around our house. But right now we're doing all that we can just to survive.

I sometimes wonder, is it us? Are we doing it wrong? I mean, how do some moms have the energy and capability to have three young boys under the age of five, be pregnant with her fourth child, bake amazing treats and still run 10 miles every day. (Yes, I'm talking about you Mrs. Sawatzky.)

And then others who find the time to sew, and bake, and keep their house clean and take their child out for modeling shoots, and still have time to make baby number two, or three.

I'm like... I really would like to have a second one. But really? Do we dare?

And I'm at odds, too. Because part of me is like... we want a second one, let's get it over with. If we're going to be tired, let's just be tired all at once. I don't want to get to a point where Alicia is a bit older, she can do more on her own, and we can take things a bit easier, and then BAM have to start all over for another 3 or 4 years with kiddo numero dos. At the same time, can we really handle adding another person into the mix, with everything that we have going on?

I mean, seriously, am I missing something? Other families seem all the ready to have more kids. Parents whose kids were born about the same time as Alicia, if they haven't already added to their pantry, are in the process of creating or baking their next sweetie pie. But in our little bakery shop, as the chief baker (my wife) so tactfully put it, "The store is closed."

And while, I would so like to contest and on occasion do try to persuade my wife to prepare for our second, part of me feels like, who am I kidding? We have four hands full with Alicia. How can I even think of having a second, or a third, or dare I say it? A fourth.

On a side note, in my naivete as a young single man, I thought, hey wouldn't it be fun to have twins? Now I think, WAS I CRAZY?! So you parents of multiples out there - hats off to you.

Don't get me wrong, there are plenty of joys that we experience. Like the sweet smiles that we get from Alicia each day. Or even her crawling up to me just now, putting her little hands on my knees and pulling herself up to be close to me. Those things are precious.

I mean, I honestly have no answers. I don't know what I can do to make things easier for Linda or myself. Or maybe there is nothing we can do. Maybe it's just a phase that we need to go through.

I guess part of me writes this to let those of you out there who are in the same boat as me know that you're not alone. Not all families are idyllic with well-disciplined children who sleep, eat, and poop on schedule, and moms and dads who keep a spotless home, while cooking dinner with one hand and changing a diaper in the other.

All I can say is I am clinging on to God for dear life, I tell you. =D

Such a Time as This

Had an interesting conversation yesterday with a new acquaintance of mine that really injected me with renewed sense of gratitude.

One thing God has been speaking to me over the years is that no matter how much at times I think that God has left me in the dust to fend for myself, he never has nor will he ever abandon me. In fact, truth is, sometimes there are things that I take for granted as, "well that's just how things are" when actually, there is no such things as "that's just how things are." We are not guaranteed that things are supposed to be one way or the other. In fact, all we have is because of God's grace and mercy.

What I'm realizing is that it is would be nearly impossible for me to wrap my mind around and comprehend just exactly how much the Lord has done for me.  In fact, I think I am probably blissfully unawares of some of the imminent dangers that the Lord has thwarted from coming my way simply because I never experienced it, so I didn't know it was coming.

I think this cartoon illustrates what I'm trying to say well:

 

I mean of course, I don't think God is ever capable of accidentally "missing one". But you get the idea.

So basically yesterday, I was having a conversation with this acquaintance when he just casually mentioned that his mom has had a series of health issues ever since she gave birth to him unexpectedly during the hottest part of the year over 20 years ago. Being a dad of an ex-preemie, my ears perked up. Unexpected birth? So I asked him what he meant. He explained to me that he was originally due in November, but he was born mid-August. Three months early, just like Alicia!

He told me that he stayed in the incubator for 10 days. "Ten days!" I exclaimed. He said, "Yeah, I know. A long time, right?" Flabbergasted I explained that Alicia was in the hospital in the incubator for four months! It was his turn to be shocked. After further discussion, we realized that the reason he was only in the hospital for 10 days was because back then Taiwan National Health Insurance was not as comprehensive as it is today. His family could only afford to keep him in the incubator for 10 days.

Wow.

One other thing about this acquaintance of mine, is that he walks with a limp. Turns out one of his legs is longer than the other and he's had the problem since he was a child. But, since info on preemie care and early intervention was not as prevalent and developed when he was young, his parents were unaware of his need for therapy until he was nearly five years old and still unable to walk. By then it was a little late for him to begin therapy and get the help that he needed, and so he ended up with a permanent limp.

After this conversation, I was just in awe. I mean, have we had a hard time? Yes! Have we had to face a slough of unanticipated trials and uphill battles? Sure! But could things have been 10 times worse? Oh, MOST definitely!

I mean, seriously, we were already so thankful for the medical insurance that brought our over $1,000,000 NT hospital bill down to only $50,000. But to think that had Alicia been born 20 years ago, we would have most likely only been able to allow her to stay in the hospital for 10 days and then what? Linda and I would have had to provide all the medical treatment and care for her at home. (On a side note, we've heard rumors that the government is considering cutting funding in preemie care so that insurance will go back to covering only 14 days of incubator usage. ARE YOU KIDDING?! Talk about sentencing these kids! But that's another soapbox for another time.)

And is it challenging and draining for Linda to schlep Alicia, her diapers, toys, bottles and formula multiple times a week to therapy? OF COURSE! But, am I grateful now for the availability of such therapy and the protocols and resources available in order to diagnose Alicia's need for said therapy so that we were able to get it so early for Alicia? OH, FOR DARN SURE.

So, Father, I'm sorry. I'm sorry that sometimes I take things for granted. I'm sorry that I think I'm entitled and that you're not doing enough. And I complain and whine that it's too hard! When, in reality, you have already done so much. Every day I'm sure there are countless things that you do for me and my family that I am quite unaware of and oblivious to.

Lord, I want to say thank you. Thank you for all the things that you have done and continue to do for us both seen and unseen, known and unknown. Thank you that nothing gets by you, and you know exactly what we need even before we are conscious of it.

Thank you for allowing Alicia to be born at a time such as this when medical information and knowledge is more developed. Thank you for providing insurance so that Alicia was able to and continues to be able to get the assistance that she needs without costing us an arm and a leg.

THANK YOU, DADDY. THANK YOU!

P.S. Here is on other amazing thing that Linda just pointed out to me after reading what I wrote above. Even if Alicia were born 20 years ago without the developed medical care and insurance, God's grace would have covered her and us even then. Things in the natural realm may have been more "difficult" or "challenging" but in the spiritual realm our God is the same God he was yesterday, today and will be tomorrow. So his grace would have been sufficient for us even Alicia were born back then. THANK YOU, LORD!

Only God knows why he had Alicia born at such a time as this. But see, that's actually the only thing that matters. God KNOWS. And he has plans for her. Plans to prosper her and not to harm her, plans to give us hope and a future.

Too Much, But HE'S MORE!

It's 4:30 a.m. By the time I finish writing this, it'll be probably closer to 5. This is about the fifth night in a row that I have not had a full night's rest. Alicia has been having trouble really sleeping soundly and has been rolling, climbing, kicking around in our bed for the past week. Before you say anything about this being the consequence of her sleeping in our bed, let me tell you, that we are quite aware. We have actually being trying a new system. 

Last week, I deconstructed her crib, removing certain parts and reassembled it into a toddler bed. Alicia's new bed is now right beside ours. For the past week, we've been rocking Alicia to sleep and then putting her in her bed. Which is great for the first three or four hours. But then for some reason, midnight or 1:00 a.m. rolls around and Alicia wakes up crying wanting to be held. By then we're exhausted, so Linda will pick her up and have her sleep with us. Which to tell you the truth, I love . . . when we actually sleep. 

However, after 5 nights of restless sleep, and one of the worst nights/mornings ever today, I gave up. I decided I needed to come up and pray. But if I am to be honest. It's hard to pray. 

I am cranky and just feeling overwhelmed. I'm feeling like, IT'S TOO MUCH, GOD! It's too much. And you might be like, "WHOA, Campbell, calm down. It's just sleeping problems. She'll get over them. It's not a big deal." But the thing is, it's not just about the sleep. It's everything!

Every time, I think we're over a hurdle, every time, I think it'll be smooth sailing from here on out, I'll get rudely jolted back to reality by some doctor prognosis, or a reminder of some special need that Alicia still has that I conveniently had let slip my mind. 

As much as I am absolutely thankful for the beautiful baby girl that we have, and that she on the whole is more healthy and normal than not, which is a miracle considering the circumstances surrounding her birth, there are still lingering issues that just continue to get deflating and disempowering.

One condition that has been on the forefront of my mind is Sensory Integration Disorder. It's one that doctors warned us about when we first brought Alicia into therapy. Actually, scratch that. I think I remember hearing about it in the hospital during an info session just a few days or weeks after Alicia was born. Except at that time, I heard the words and description, but kind of half tuned out because a) it was all in Chinese and b) I had no context at that time to really make sense of what was being described. 

Long story short, Sensory Integration Disorder is a condition where children aren't able to process or organize the sensory stimuli that they are receiving. 

The interesting thing about Sensory Integration Disorder is that there are actually those that don't really think it exists. They believe that the symptoms described are actually indicative of other developmental issues and not unique enough to give it its own diagnosis.

Regardless, I believe it exists. However, until this morning, I had a hard time really grasping exactly what it was. Thing is most of the time when Sensory Integration Disorder is talked about, they describe a child who is hypersensitive to stimuli. They cry at even the slightest touch. They get overwhelmed by noises that you and I would deem as normal. They get irritated by even the most minute of sights, sounds, smells, tastes and touch. But that wasn't Alicia. She wasn't hypersensitive. 

In fact, for the most part I felt really blessed to have such a good child. She didn't cry when she had a poopy diaper. When she got immunization shots, she'd cry for about 10 seconds and then she was fine. All things that I thought, wow, we are so blessed to have such a good one. 

Come to find out, these things might not be as good as I thought they were. Yes, Alicia, isn't hypersensitive. But as I learned from research, there is actually the other extreme of the Sensory Integration Disorder. One blogger describes it as seekers verses avoiders.

Avoiders are the hypersensitive ones. Seekers are the ones that go after stimuli as if they can't get enough. Alicia seems to fit under the latter. 

She is constantly on the move. Unless, she's strapped in a chair, or she's strapped in her carrier, she's crawling around and ...

I started writing the above at 4:30, but now a half an hour later, I'm convicted. The above was a gripe. A complaint about why I felt overwhelmed and drained. But as I was writing, I just felt very clearly in my heart that it was a waste. It was nothing more than griping and complaining. And yes, I think there is a place for sharing your heart and your struggles, I just felt that I was being overly negative.

Sure Alicia needs special help. Sure she has some potential challenges and she needs extra care. But there is also PLENTY to be thankful for.

In case, you can't read the above, most of it was about a certain disorder called, "Sensory Integration Disorder" or "Sensory Modulation Disorder." And while, yes, admittedly Alicia does have some of the symptoms of this disorder. I do not believe that complaining about them will do any good. I mean sure, she's always getting into everything, constantly emptying a whole box of toys just to look at everything, constantly crawling around, unable to sit still unless strapped down. She's often chewing clothing, playing with food, under-responsive to pain, chewing on toothbrush, oh, did I mention not sitting still, especially when we're tying to change her diaper, etc... But thing is she has many moments when she's completely focused, engaged and fully alert.

So do I choose to focus on the negative and frustrating things or do I choose to focus on the things I'm thankful for? Sure, I can't deny that perhaps Alicia needs some help to learn to organize some of her senses. However, I do NOT need to wallow. We get Alicia the help she needs. We help her as much as we can. That's a part of being a parent.

Do I feel, at times, that we got the short end of the stick? SURE. But truth is, there are plenty of kids who are FAR worse than Alicia. (Not that we should be comparing.) I mean can you imagine not being able to touch your child, or sing to her for fear that it would overstimulate her? Or how about your child purposefully running into things, or doing dangerous things because they are under-stimulated. Alicia doesn't do any of that.

Yes, she has certain things that are indicative that she has SID or SMD. But, they are mild.

But I will ask you to pray for this. Pray for Linda and I to have strength and keep focused on God. It's been said that, "God will never give us more than we can bare." Well, unfortunately, this is a gross misquote. The Bible doesn't say that. He says he won't allow us to be tempted beyond what we are capable of resisting. In fact, Paul in describing his experience in Asia says that "We were so utterly burdened beyond our strength that we despaired of life itself."

God does put us in positions where we can't handle it. But as Paul continues to say, "[It's so that it will] make us rely not on ourselves but on God who raises the dead." 

Is it always easy to rely on God? NO! I am tired. I am not going to lie. I am drained and exhausted. BUT he has us in this position for a reason. He apparently loved Alicia enough to give her to Linda and I in this condition. He felt that we were the best parents to help her through this life. And I am honored. But MAN, do I feel completely overwhelmed and inadequate. And I can speak for Linda here, too. We both feel the same way.

However, as I have been reminded several times, just this week itself, my God is a big God. He is BIGGER than all of these struggles and trials. He is bigger than the storm. And as Jesus did in the boat, as it was being tossed about by the storm, I need to rest and know that he's GOT IT.

I may not be able to calm the storm, but HE CAN. And HE has promised that we will come through on the other side. So you know what, SID or SMD, and any other thing that may want to try to hinder my daughter? I'm going to tell my Daddy on you! Actually, no, I'm going to tell YOU about my Daddy.

He's the one who put the world in place. He's the one who knit Alicia fearfully and wonderfully in Linda's womb. He knows every fiber and cell in all of our bodies. The wind and the waves obey him. And HE PAID the ULTIMATE PRICE so that we can have life ABUNDANT! And this abundant life? It does not include you. So go on and git!

In the words of Gloria Gaynor, "Go on now go. Walk out the door. Just turn around now. Cause you're not welcome anymore. Weren't you the one who tried to hurt us with goodbye? Did you think we'd crumble? Did you think we'd lay down and die? Oh, no not us, we will survive.  Oh, as long as we know how to love, we know we'll stay alive, we've got all our lives to live, we've got all our love to give, and we'll survive, we will survive (hey hey)!"

Judge Not

 Prior to having a child of my own, I thought I knew a thing or two about parenthood. I'd look at parents with their children, and I confess, I'd judge. "I'll never yell at my child in public." "Look at them, why can't they control their kids? My kids will be so much better behaved." "Those parents are softies. They let their kids run their lives." Ha. Oh, my naivete.

  Thing is, I know I'm not alone. I have read a number of blog posts and articles, written mostly by moms, that have confessed the very thing that I just shared. Many writers frame their posts as an open letter of apology to any and all parents they may have judged in the past. I guess, I'll follow suit.

  I'M SORRY.

 To the parents with the kid who takes forever to eat, or refuses to eat, that I judged. I'm sorry. To those parents that co-slept with their children, that I looked down on. I'm sorry.

  I am learning fast and hard that parenting IS NOT easy. I read books, I tried to prepare, but seriously, I feel like when you're actually on the field in the game, most of that knowledge just goes right out the window.

 When I first started out in this world of parenting, I was determined to be the model father - one who walked the fine line of love and discipline. One who would have well-behaved children, who knew they were loved and yet would keep in line and know what to do when and where.  I rejected the notion that my daughter would ever be capable of wrapping me around her little pinky. I was the authority, not her, she would live by my direction and not the opposite way around.

 Right. Did someone just splash cold water on me, because I am now fully awakened and out of my dream-like fantasy?

  The longer I am a father, the more I realize, I have NO IDEA what I'm doing. Half the time I'm guessing at what the best thing to do is. I try to stay strong and maintain discipline, but I fear crossing the boundary and inflicting some trauma or emotional scar on her.

  One clear, example, as those of you who are my friends on Facebook know, is the idea of sleep training. Seriously, I thought I knew what I was supposed to do, but truthfully? I don't.

  I got into this thing, completely believing in the philosophy that a child needs to sleep in his or her own bed, and they need to learn how to soothe themselves to sleep. If that means crying it out a couple of nights, then that means crying it out a couple of nights. I was determined to have a heart of steel, my child will cry, and I will be immune.

  Linda (my wife) and I even had several arguments about the best way to put Alicia to sleep. I felt Linda was being too soft, she felt I was being too hard. And I was angry. I really wanted to teach Alicia to sleep on her own. But it was hard for Linda to hear Alicia crying so relentlessly. I even went so far as to lock Linda out of the room so I could put Alicia to bed MY way. (Note to husbands out there, NOT A GOOD IDEA, unless you really want to see the Mama Bear rear its claws.)

  As determined as I was,  I quickly learned that I was no superhero. And even if I were, every superhero has his weakness. My Kryptonite? The tear-soaked, snot-smeared red face of my poor little girl as she cries pitifully on her knees with her arms raised begging me to pick her up.  I mean, I couldn't. I just COULDN'T just leave her there.

  Eventually, Linda and I came to a compromise, and by compromise I mean, I completely crumpled to the pressure and we have been rocking Alicia to sleep and lying in bed with her until she's asleep pretty much every night since she was a few months old.

 Oh, don't get me wrong, we've tried, several times in the past year or so to do the sleep training thing. We got into a few more arguments. I even tried to do research to prove that I was right. Yeah, well, I don't know what's right. Is there even a right?

  It just doesn't feel right to let a child cry out in desperation and not respond.  I mean what does that teach them? I know the arguments. Life is cruel. People are harsh. We don't always get what we want. But really? Are we, as parents, supposed to be the ones to inflict that on them so they can learn?

  So often I try to think what God would do? I mean, he's supposedly the perfect Father, so what would he do? Somehow, I just can't imagine him turning his back on us if we're crying out desperately to him.

  And thing is, I know the idea of putting them in their crib, leaving the room and letting them cry it out. But again, I just feel wrong about that. Cause I mean, how do I know that it's just she doesn't want to go to sleep? What if I'm wrong? What if she just really doesn't want to be left alone? What if she's scared? What if she's really stressed out about the separation? Am I to just leave her? How does that not create abandonment issues?

  Let me take a break here and say that I'm not advocating or condoning one method over another. I am not placing any sort of judgment or criticism on the cry-it-out method or the co-sleeping method. I am simply sharing with you my thought process. So if I have offended, please forgive.

 Back to what I was saying. So recently, Linda and I thought it might be time for Alicia to transition into her own bed. She's getting bigger, and so three of us on the bed is getting a bit crammed. And honestly, I don't think I've have one night of uninterrupted rest whenever she sleeps with us. It's not that she wakes up, because on most nights she sleeps through the night. It's just that she moves around a lot, so if it's not a foot in the face, it's a head-butt to the gut - hard not to wake up under these circumstances. So we thought, OK, let's try to teach her to sleep in her own crib.

  Right. You'd think I was inflicting some sort of cruel and unusual punishment on the child, the way she carried on. Eventually, I had to tag out. Linda took over, rocked her to bed, and then placed in her in the crib, while I went to do some self-soothing of my own.

  The next morning, Linda took Alicia for a routine check-up with a doctor specializing in developmental issues. Linda shared with her how we were trying to transition Alicia into her own bed. The doctor actually recommended that we not rush.

  She asked Linda if Alicia when sleeping with us, would crawl over to one or the other of us and insist on some sort of physical contact with us. Linda confirmed that this was indeed the case. We'd place Alicia somewhere between us while we're settling in for the night, and try our best not to to touch her, for fear of disturbing her sleep. But somehow in the middle of the night, Alicia would always crawl or somehow maneuver her body so that her hand, her head, her foot... some part of her body was in contact with either I or Linda.

  The doctor explained that since Alicia was born so early, she lost three crucial months in the womb for bonding and connecting with mom. It's also during these last three months that the senses are developed and infants brains learn to receive and organize various stimuli. So now, she seeks out extra stimuli in a way to make up for what she lost in those last three months.

 Also, the co-sleeping allows her to build a bond and connection with us that she didn't get in those four months in the incubator. So apparently, her co-sleeping helps with her emotional and cognitive development. And to be honest, I do see a difference. I feel like I've heard somewhere that preemies in general are very irritable, anxious and rather insecure. But Alicia is none of those things. She's actually rather happy, mild-tempered and quite secure. And I do think that part of that is the bond that she gets when she sleeps with us.

So I really don't know. I mean part of me thinks, man it's a lot of work to have to rock her and hold her every night until she falls asleep. There are so many other things that I could be doing. But then the other part of me thinks, well, just suck it up. She's only going to be a baby once. And really, to who's benefit is it for her to "cry-it out?" So she stops crying after a few nights, but is that really because she's learned to self-soothe, or is it because she's learned that crying is of no use, and well, so why bother? I don't know. I mean, I just keep thinking, am i just being selfish and trying to let myself have an "easier" time?

Then there's the fear that we'll spoil her by rocking her to bed every night. But studies have actually shown that kids who co-sleep with their parents for even a brief amount of time, end up being more well-adjusted and more socially adept. And I mean I have also conducted my own non-scientific, non-professional observations. I have noticed that those kids who co-sleep with their parents tend to be more outgoing and less fearful and shy than those whose parents force them to learn to sleep on their own. Again, non-scientific, definitely not conclusive, and for sure there are exceptions to the rule. But for the most part the kids that I know that are more happy and less clingy are those that have done some amount of co-sleeping. I wonder.

  Anyway... so, conclusion? I don't really have one. Only that Linda and I will continue to love on Alicia in the best way that we can. And that we will continue to pray for wisdom.

  I believe eventually Alicia will outgrow the need to sleep with us. Hopefully she won't, as Linda said today, go straight from sleeping in our bed to sharing a bed with her husband. But, I think for now, we'll just stick with cuddling up with our little angel while she's still wanting to be with us, cause for sure, soon enough, she'll be all grown-up and out of the house and well, it'll probably be me who'll need some rocking and soothing the first night that happens.

Time

What is time? Minutes, hours, days pass. Time continues to move forward. And yet, so often it feels like things continue to stay the same.

As I write this, it is almost midnight of March 10, which means that in a few minutes Alicia will be 18 months old adjusted (her age she would be if she had been born on her original due date). Our daughter would have been one year and six months old if she hadn't decided to come out early.

In the beginning, when I was still learning all about what it meant to be a parent of a preemie, I learned all about adjusted age vs. actual age. For a brief short hours, I had the naive fantasy that because she was born early that she would maybe somehow be ahead of the curve. She'd develop earlier than everyone, she'd learn how to walk, talk, etc... before everyone else. Well, it wasn't long before my metaphorical bubble was quickly blasted into tiny fragments of imagination. I learned from doctors and my own research that not only did her being a micro-preemie mean that she wouldn't be ahead of the developmental curve, but also, the truth is, the condition of her birth might cause her to be "delayed". I was disappointed.

Being someone who likes to be ahead of the curve, years ago, whenever I'd hear stories of my friend's children learning to walk at 8 months, or learning to talk before their first birthday, I used to think, someday, I want my child to do that. Ha. Well, as I've learned, things don't always work out the way you'd like.

While I was disappointed at first to hear the news, it's only recently that I've begun to feel the full brunt of the let-down.

I see my niece, Hope, who was originally due within weeks of Alicia, walking, running, picking things up, holding her own cup, feeding herself, and I can't help but think, wow, if Alicia were born "on time" she'd probably be doing those things.

But I comforted myself, and thought, it's OK, she's just a little behind, she'll catch up.

Then I see, Karis, one of Alicia's closest friends, she just turned one a couple of months ago. She's already started walking and toddling around, and I think, when will it be our turn?

It's gotten to the point where kids who are younger than Alicia are surpassing her in the developmental milestones, and I just keep thinking, when, God? When will she catch up?

And then there's her size and her weight. When I look at her just on her own, I think, she's great. She's growing, and wow, she's so much bigger than when we first brought her home. But then I look at other kids her age, and they're like twice her size. And today, I learn that Alicia's other friend, Joshua, who is 5 months old, is wearing the same size diaper as she is. I'm like... ARGH!

And the doubt starts creeping in. Am I not doing enough? What can I do to help her develop faster? She's only started babbling, and even then she just makes the one sound over and over. How much longer before I can hear her call me "Daddy"?

I feel like ever since Alicia's been born, it's been this constant waiting game. Most parents hear their child's cry within seconds of delivery, we had to wait months. Most kids get held within moments of being born. Alicia had to wait months. Most kids go home with Mom and Dad a few days after birth, we waited... yes, that's right, months.

In fact about the only thing we didn't have to wait for was to see her, because she came out early. But you know what, I could have waited. I really could have.

But there's no use playing this could have, would have game. She came out early, we can't change that. We just help her with what we can now.

And I know there are people that say, "What's the rush?" Let her crawl a bit longer. She'll talk when she's ready. I know all that. It's just as a parent, you can't help but wonder, is she OK? Will she really "catchup" as everyone says.

I'm sure that in a year from now, I'll look back on this and think, what was I so wound up about? She's fine! And I know she's OK.

I guess, I'm just tired of waiting. I want to hear my daughter call me Daddy. I would give anything to not have to think about her muscle tone being tight, and not having to wonder if she's using her left arm enough, or is she standing right, or why isn't she making more sounds?

Thing is, it's a huge lesson in NOT COMPARING. Right? I mean, yes there are "norms" for development but each child is different. Each child develops at his or her own pace. And barring some huge unforeseen circumstance she's got a good 90-100 years here on Earth ahead of her to walk, talk, dance, etc... So why am I in such a rush?

I think I just want to know that she's OK. I just want her to have a good life. I want her to have full function of her body. I don't want her to have any "problems".

But really? What can I do? Not too much. I can pray, and that's a huge deal. But beyond that, she's going to develop at her own pace.

And besides, she is doing so well. Alicia is such a happy, well-adjusted, secure child. She isn't overly emotional, and doesn't cry for no reason. She isn't afraid of strangers, and will readily share a smile with people she just met. She is so responsive when we talk with her and play with her, and seeing her face light up every time I walk in the door after work just fills my heart with so much joy.

So really, I just need to suck it up and trust God. Time is such a relative thing anyway, eh? What is "on time"? What is "late"? God is ALWAYS on time, and he will never be late.

Do I wish that he would do things on my time table? OF COURSE! But, he's God, he created Alicia, he brought her out when he did. I've got to trust that he's got her life in his hands. He has come through again and again with Alicia's life, so there's no reason to think that he's going to stop now.

So, Daddy. I just let go. Alicia is your daughter. You've entrusted her to our care, but ultimately, she's yours.

And I will just relish the milestones just that much more when we arrive. =D

Torture

Those that know me, know that for the most part, I'm a pretty cheery fellow, known for bouts of mischief. However, I have also been told at various times over the years that I can be pretty intimidating. Something about my face when I'm in a bad mood, or am pensive makes me look fierce and threatening. Well, you should have seen me tonight.

So today was day 4 of our hospital incarceration. Yes. I said incarceration. For that is how it feels being stuck in our tiled 1970s style hospital room. As far as we can tell, the reason the doctors haven't released us is because over the past few days, Alicia's temperature hasn't been stable and she's had a few fevers.

Well, Linda and I have been making the most of our little staycation at the hospital, and I have to admit that I have been enjoying the extra family time and the fact that Alicia has been especially cuddly since she's been ill.

But I digress, back to me being fierce and threatening.

So, for some reason, Alicia really doesn't like having her diaper changed. And over the past few days, she's been especially fussy when we lay her down to change her diaper and she especially struggles when we try to change her clothes, which is made even more complicated by the fact that her right arm has been attached to an IV.

So tonight before bed, we decided that we could change Alicia's clothes so she could be more comfortable. But that involved getting the nurse to detach her IV which is a process in and of itself. Well, our dear Alicia struggled her way through the IV detachment, and then struggled through us undressing her and dressing her again, so much so that her IV needle got dislodged. Causing blood to go back into the IV, and also around the IV.

Since we are in the hospital for at least one more day, the nurse said that she would probably need to change the IV, since this one was no good anymore. But just to be sure she would confirm with the doctor.

So she left our room. Ten minutes later, no news from her. Twenty minutes later, thirty minutes later still no news. Meanwhile, Alicia, has this syringe attached to her IV needle, dangling from her hand, which when she's not trying to eat it, ends up accidentally shoving it into my neck. So we're like, OK, what's going on? So we page the nurses station, and the nurse tells us through the monitor that the doctor is coming to change the IV, but that she's busy at the moment, and will be with us shortly.

We wait for I don't even know how long, but a long time. By now it's almost 11:00 and I want to put Alicia to bed. So finally, I decide that I am going to carry Alicia out to the nurses station and let them see her darling face, and in the kindest way possible ask them to please ask the doctor to hurry her butt up.

Well, we get out there, and the nurse sees us and says, "Wow, how did you guys know that the doctor just came up. We were just about to come get you."

All right, great. Let's get the show on the road.

So the nurse and the doctor direct us to a side room with a small examination table, and asked us to lay Alicia down.

Alicia, as I mentioned before, is very aware. As soon as I layed her down on the table, she started to cry and writhe about, probably fearing the worst.

It took three of us, Linda, a nurse and myself to hold Alicia still while the doctor examined her hand trying to find a vein to insert the new IV into. Linda and I did our best to calm Alicia down by singing to her, and it seemed to work for a bit, but the doctor was just taking FOREVER. She couldn't find a vein.

Eventually, she asked the nurse to get a light so she could shine it into Alicia's hand and so she could find a vein. Finally, after what seemed like an eternity, or a few minutes, depends on who's counting, the doctor found a vein that could possibly work.

Oh, you should have seen the thrashing that ensued. Oh, man. I thought giving Alicia medicine the sleep medicine was bad. Her crying and bucking only got worse as I watched with trepidation as the doctor gingerly inserted the needle into Alicia's hand. It was horrifying, Alicia cried out in pain and fought tooth and nail trying to get her arm free from the pain that I can only imagine she was experiencing. Finally, I saw the needle go in, and thinking the worse was over, I breathed slightly, only to notice that the doctor started to pull the needle out and then insert it again. In and out, in and out she went several times, all the while Alicia's crying her head off. Finally, I couldn't take it anymore when I could tell that the doctor was having trouble. I finally, said, "Can we please take a break? PLEASE!"

The doctor, seeing the strain in our eyes and knowing the stress that Alicia must have been going through, kindly agreed, and said, sure let's take a break.

I couldn't pick Alicia up and get out of that room soon enough. I was doing my best to calm Alicia down, while seething at what I viewed as complete incompetence on the part of the doctor. (For those of you in the medical field, you'll excuse my nasty comments at this point. I realize that the doctor is a very intelligent woman, and she's doing her best, but as a father, I am PISSED OFF.) I walked down the hall with Linda who at this point had taken Alicia into her arms to comfort her, and out of earshot of the doctor, I just started to mumble to Linda.

"Are you kidding me? What is she doing?! I mean, really? In and out and in and out with that needle. And don't you know that if you're working with an infant, that you cannot take your sweet time trying to find a vein?" I decided that if it was at all possible, that I would not let them do that to her again. So I went over to the doctor, and I asked her if we really, really needed to insert an IV? Couldn't we just use the old one?

She said that the old one was damaged, and therefore was no good, and that since we were going to be here for one more day, at least, that they needed to insert an IV for Alicia's sake. She also assured me that they had called another doctor who was more experienced to help with the insertion. So I relented, and said, all right, well, let's try again.

When Linda saw the new doctor she said, "Oh, this is the doctor who helped to take care of Alicia last year when she was in the Sick Baby Room. She's directly under our primary care pediatrician, so she's good." That put my heart at ease . . . until we got back into the examination room.

By now Alicia had calmed down and was nestling in my arms. But once again as soon as I lay her down on the table, she started crying. This time even harder than before, anticipating what was coming next. I literally had to hold Alicia down with force while once again the doctors searched for a vein. It was pure torture for both Alicia and for Linda and I. Finally she found a vein, and she inserted the needle, once again with lots of struggling and crying from Alicia. But as soon as she got the needle in, she shook her head, the vein had broken under the skin. No good. So out came the needle.

Linda at this point looked at the doctor and said half-jokingly, here, please take my arm, take my blood. I can't bare it anymore. The doctor looked at Linda and smiled with understanding.

They were going to try again, but I asked if I could please just hold Alicia and calm her down for a bit first. They agreed. So I took Alicia out of the room once again.

Once she was calm, we went back into the room to try again for the third time. The first two times, since Alicia's original IV was in her right hand, the doctors were trying to put the IV into her left hand, since they like to alternate hands. However, after seeing that her veins in her left hand were pretty thin, the new doctor decided to try to put it into her right hand again.

However, this would require the removal of the old IV. Oh, man, another battle, but thankfully, not as much as a struggle as the actual insertion of the IV.

Well, after the old IV was out, it was time to try to get a new IV in. And once again, the search for a usable vein began. Unable to find one in her hand, the doctor searched for one in her arm, finally they found a vein that could work, and so they began the prep work.

I'm sure I don't need to mention again that this whole time through the search, the prep, and everything that Linda, the nurse and I are doing the best we can to hold Alicia still, and to keep her from swinging her arms. Our little girl is a fighter, I tell you. She is STRONG. You should have seen the fight that she was putting up.

Seriously, I felt horrible willingly participate in the torture of my daughter. Well, finally the arm was prepped and the moment of truth was upon us. Before, she inserted the needle, I heard the doctor say, OK, this is the last try. So she inserted the needle, while I held my breath, and to my relief, I saw blood start to flow into the needle. She struck gold! Yahoo!

Wait, the doctor is shaking her head. Something's wrong. The vein burst again. ARE YOU KIDDING ME?! Now I know that it's in no way the doctor's fault. I'm sure that it was a combination of Alicia's delicate veins and also her thrashing about and using force that burst the vein. But my heart really sank. And I had it. I begged the doctors. I asked them if we could please, please not have to insert an IV.

They asked how she had been eating the past few days, and Linda and I were quick to say, she's been eating great. Really! And besides, her fever medicine and other meds have been administered orally, I reminded them.

After considering for a moment, the doctors were merciful, and said that we could just not insert an IV and see how she did tomorrow. I swept Alicia off of the table seething, and marched back to our room as quickly as I could.

I held Alicia in my arms, but she was still all wound up from the fight, and crying and crying. I felt angry, and sad, and really upset at what had just happened. Linda tried to take Alicia from me to comfort her, and I snapped and said, "I'm fine!" Sorry, honey. Linda just laughed and said, that she thinks her wanting to hold Alicia was more for her comfort than Alicia's. So I passed Alicia over to her, who calmed down right away. Linda really is Alicia's source of comfort for sure.

Alicia dug her head into her Mom's shoulder and just nuzzled her little face in for comfort. Every once in awhile, she'd peak up from her shoulder to see if I was still there, and I looked into her sad eyes feeling like my heart had been wrung out.

I was simmering with anger, and started pacing about trying to pack myself up to prepare to go home. All the while ranting and asking why in the world we were still in the hospital. I felt that what we had just gone through was completely unnecessary. Alicia really didn't seem that bad in my eyes. Why were we even there?

I mean in the end, I had to admit that with all that has happened, it is better for Alicia to be 100% better before we get discharged, but it was just hard!

As I said on Facebook, earlier, if I never have to see my child ever get pierced or pricked with a needle again it will be too soon.

Hoping that Linda and Alicia are resting peacefully now. Tomorrow is a new day. And I hope our LAST day in the hospital EVER!

72 hours continued

OK... so here we go part 2 of the epic story. =D Don't you love my dramatic flair?

First, to answer the question that I'm sure many of you have on your minds? Is it Meningitis? ... Thankfully, no!

Here's how we got to that conclusion.

So last I left off, we all went to sleep exhausted after a long day of hospital visits.

The next morning, we all woke up after not really resting solidly throughout the night. The doctor came in to check in on Alicia around 9:00 and told us that he wants to schedule Alicia for a brain scan later that morning in order to rule out any abnormalities in brain function. This scan would be different from the sonogram in that it would measure brain waves and not just show a picture of her brain.

Also, knowing that the ophthalmologist had some concerns over Alicia's eyes, he also ordered a test done that would measure on a neurological level how well her eyes were transmitting signals to her visual receptors. Both tests would be done that day.

Now, what you just read, I hope seemed pretty coherent. Very different from my state when the doctor was talking to me. When the doctor, spoke I did NOT get all that information at all. All I knew was that she was going to get some sort of test done sometime during the day. In fact, I find that a lot of times when doctors speak, it's only in processing back the information that I really understand everything that they were saying to me.

Anyway, so back to the tests. Both of these tests involved putting Alicia to sleep, so about half an hour after the doctor left, a nurse came in and gave us a dosage of sleep medicine to give to Alicia orally. Simple enough, right? NOT.

This medicine apparently is really bitter and kids really dislike the taste of it. Linda has had a lot of experience with this medicine, since she had to on two prior occasions give Alicia the same medicine to put her to sleep for a couple of auditory tests done earlier in the year. Knowing Alicia's reaction to taking this medicine, it was with dread that we faced the task of feeding it to her.

Knowing that the medicine was really horrid tasting and that Alicia wouldn't like it, we asked the nurses if they had any kind of syrup or sugar to help the medicine go down. (Anyone humming Mary Poppins?) The nurse matter of factly told us no, they didn't, as if it wasn't their concern how we got the medicine down Alicia's throat.

Well, we took a deep breath, and decided to try our best. Oh, man, you should have seen Alicia's reaction as soon as she saw the medicine. We could barely get a drop in, so I told Linda to go downstairs to a coffee shop or somewhere to see if we could get some syrup. So she left, and I sat there with Alicia trying to figure out how to get this medicine into her.

That's when the nurse came in. She saw me struggling and asked me where Mom was. And I said she went to get some sugar. The nurse looked at me and said, "There's not enough time. The test is at 10:30 and it was already 10:00. We need her sound asleep for the test. Give me the medicine, I'll help you."

Oh, man, what happened next was a scene straight out of a horror movie. You should have seen Alicia kicking and screaming and thrashing about as I held her head and body still as the nurse dropped the medicine down her throat. Wow. You would have thought we were burning her alive, the way that Alicia was reacting. I felt like a horrible man for willingly participating in the "torture" of my daughter.

Well, as soon as we got the medicine down, in comes Linda with the syrup. Too late honey.

We thought we would maybe give Alicia some of the sugar to wash the taste out of her mouth. She would have none of it. We ended up dropping most of the sugar on our bed and just giving up on the endeavor.

Eventually, Alicia fell asleep in my arms, and it was time for us to bring her down for the test.

Oh, man. Another battle. Alicia is a very sensitive girl and quite aware of her surroundings. We brought her into the testing room, and as soon as we layed her down on the bed, she would awake and start crying. So we picked her up to calm her down and get her back to sleep. As soon as she was asleep, we would try again. Again, as soon as her body hit the bed, she had another crying fit.

The technician felt bad for Alicia, since her eyes were getting all red and swollen from all the crying, so she said, maybe we should just take Alicia back to our room, keep her awake, and then later on in the afternoon, we could bring her back when she was more sleepy.

So we picked Alicia up, pushed her IV stand and started walking back to our room. Half way back to our room, we realized that the medicine was really taking effect, and that no matter what we did, Alicia would NOT wake up, so we decided to go back and see if we could try again.

The technician was gracious and allowed us into the room again. Thinking she was fast asleep, we started to lay Alicia down, but once again, she woke up crying. Linda decided to see if her mother's touch could calm Alicia down enough to let her sleep. So she picked her up, rocked her back to sleep, and tried to lay her down. Again, to no avail.

Eventually, what we ended up doing was Linda rocked Alicia to sleep, and then as soon as she was asleep, Linda climbed onto the bed, and lay her down, and then lay on top of her until Alicia calmed down enough to fall asleep. Thankfully, after 30 min of battling with her, Alicia finally fell asleep enough to get the sensors on her head, and finish the test.

Forty-five minutes later, we were back in our room, and Alicia was out like a light on her bed.

We got to rest for a couple of hours, and then we were informed that it was time for Alicia's second test.

I won't go into all the details of the second test, but suffice it to say, we went through the whole ordeal again. At first, we thought we didn't need to give her another dose of the medicine, but as soon as we laid Alicia down on the bed, she woke up and this time she became wide awake. So we had to go through the process of feeding her the medicine, rocking her to sleep and then gingerly putting her down only to have her wake up again.

This time, we decided that when we put her down, we would just let her cry herself to sleep, which thankfully she did. At which point, Linda and I left the room and let the technician do her thing.

This time the test took about 20 minutes, and we were back in our room.

A few hours later, Alicia's doctor who is a specialist in pediatric brain development and neurology came and gave us the results of her test. He told us that there was nothing too abnormal with Alicia's brain function. Praise God. He said of course, because of the brain damage she suffered when she was born, her right brain was not firing at the same rate as her left brain. But he said that was to be expected. And at this point he said it wasn't anything too big to be concerned about.

He said that since all tests came back normal, his diagnosis was that Alicia had the spasms most likely due to the fever. He said that the first 72 hours after an instance of seizure is critical so he wanted us to say in the hospital to monitor Alicia's fever, and also to see if she would have another episode.

As for the eye exam, he explained to us that the test measured how quickly it would take for a signal to go from the eyes to the visual receptors in the back of the brain. He said that for Alicia her results were a few milliseconds off from normal, but that as she grew older this would be barely noticeable, and again nothing he's too concerned about right now.

So thankfully, our Alicia is doing well.

The past few days have been just a lot of resting and sleeping for her, and a lot of us fighting to get medicine down her throat.

But overall it's been a great time of rest, and for the family to be together. Definitely a lot of cuddle time for me and baby girl, which I am enjoying, despite the soreness and crampiness I get in my body after lying in bed for hours at a time.

Praying that Alicia can quickly get this virus out of her body, so that we can all go home and get some proper rest.

Pray with us that Alicia can get well quickly, and that she can go back to being her smiley cheerful self again soon.