So much time has passed!

Hello, all, 🙂
So much time has passed and so much has happened! I almost feel compelled to change the blog name to “God loves the KO family” or “God loves Alex Ko” since the KOs have gone through a CRAZY episode of another hospital stay for Alex but I guess for now, godloveseliana will suffice. Because God does love eliana, our sweet little girl. And there will be another time to share about Alex…

Alex and I now look back and think of the uncertain days we had in terms of Ana’s development and we thank God so much for enabling her to surpass so many of our expectations in unimaginable ways. We weren’t sure if she would be able to walk or run– and now she does! She is so busy chasing after Nathaniel around the house! We weren’t sure if she would be able to talk– and now she does. She talks up a storm actually. Because of the cleft lip and palate it is VERY difficult to understand her, but Alex and I understand what she is saying. It’s kind of like our little secret language that no one else understands except our family. It’s so neat that Nathaniel actually can understand Ana’s mumbo jumbo most of the time! And I giggle to myself thinking how in the world he learned to figure her language out. I guess when you are together so many hours together, you learn to understand what each other is saying– even if it is a different language. We weren’t sure if she would be able to understand, comprehend, and learn things–and she can! The regional teacher that comes out to teach her once a week says Ana is not behind cognitively. God is so gracious. I realize that He has been answering the desires I had for Ana that I did not even put into prayers. I feel so ashamed to admit that I have not been praying for Nathaniel, Ana, and now for Joey as nearly as much I should have. Yet God has been so faithfully developing and growing Ana even when I had not been faithful as Ana’s mom to pray for all these things. This morning I realized that God has so purposefully placed Ana in my life to remind me to pray. She is my call to prayer. In hindsight, what a blessing it is to have Ana the way she is in my life. Without her, I would be further away from God and less dependent on Him, my true source of strength. And now Alex, is my call to prayer too. 🙂 I have so much to be thankful for. I’m thankful that I can think much more clearly after the storm passes by. In the midst of the trial I get into a survival mode and I don’t remember much from it other than pleading God to just survive another day. But after all is somewhat over, I can look back and say that what I thought were curses and disasters are the exact things that I can’t live without– like our sweet little girl Ana. 🙂

Summary of updates:
– Ana may not need another heart surgery! Her PA band was ballooned up and hopefully will not need another catherization to open it up! Her VSDs have closed up and her coarctation of the Aorta seems to grow on its own too! 🙂
– Ana pretty much does everything a healthy two year old would do except eating by mouth. Praise the Lord for allowing her to come thus far!

Now moving onto our prayer requests.. Please pray for:
– Ana’s eating!! She is still solely fed through the G-tube. She does eat some food by mouth which is a HUGE praise!! But she just eats one tiny little bite and she’s done. It also takes about 30 minutes to 1 hour to have her swallow the little bite she has in her mouth. It gets pretty frustrating… Please pray that I would be patient with her and wait for God’s perfect timing to have her eat by mouth. No matter how much I try, I realize that God is the One who will change things in His perfect timing. 🙂

Thank you so much for partnering with us to pray for Ana! Words cannot express the gratitude I have for you!

love,
Maria

On Ana's second bday

On Ana’s second bday

 

Ana used to have food beard as she spat out food after sucking the living daylight out of them... But she EATS them now!!!  Just very tiny little bit.

Ana used to have a food beard as she spat out food after sucking the living daylight out of them… But she EATS them now!!! Just very tiny little bit.

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N and A with our newest addition Joey!  :)

N and A with our newest addition Joey! 🙂

On Ana's second bday

On Ana’s second bday

 

She’s crawling!!!

Praise the Lord! Ana’s crawling! 🙂 🙂 We are so thankful and proud of our baby daughter. She’ll turn one in 9 days–God has been so faithful this past year of her life! We give Him all praise and glory for what He has done in her life so far. May she be used mightily for His Kingdom for years to come!

update:
Her palate surgery was supposed to be this Thursday but it has been postponed for about a month because she was recently sick with cold. Please continue to pray that her surgery will go well. Hopefully this will be her last surgery!

Newest development

Hello all!  🙂

Ana recently started to flip from her back to stomach.  This is something we have been waiting for a long long time.  She also recently started to sit up from lying down on her stomach.  We were all very elated to see her develop so much.  🙂  The final product was something quite unexpected: when I put her down in her crib on her back, I found her randomly sitting instead of sleeping.  Since she doesn’t know how to go from sitting to lying down, I once found her stooped forward from sitting position and sleeping.  Poor thing.  Good thing she is so flexible.  🙂  One time she kept on waking up in the middle of the night and started to wimper.  I left her for a while and went to check up on her and she was sitting in her crib in the dark.  After it happened two times in a row, I knew I had to do something.  So, I came up with a brilliant idea!  🙂  I put a pillow in her crib so she wouldn’t have a room to flip over!  Now she sleeps squished in between the rail and the pillow.  It was really the only thing I could do.  Hopefully she’ll learn to lie down on her own and I can take the ridiculous pillow out of the crib.

We are so pleased and thankful for her continual development!  I think she’ll start to crawl soon!!  🙂

So excited,

Maria

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Surgery date set!

God has answered our prayers again! 🙂 We got a second opinion from the surgeon and he also agreed that we should get an MRI, but the pediatrician decided to do ultrasound first because the size of the lump is decreasing! 🙂 So she doesn’t need anesthesia two times in a row! 🙂

The surgery for her palate is set on Jun 13th. Hopefully she won’t be staying in the hospital for too long after the surgery. Her bday is coming up on the 20th too! 🙂 Can’t believe she’ll be one year old soon!!

Thankful,
Maria

Lump in her leg

Hello, everyone. 🙂 The KOs have moved and purchased our first home! It’s been a hectic few months. For those of you who are out of town, please come visit us and we will actually have a room for you to stay!

We have been doing well– since the last time we posted there has been many ups and downs– but overall, we are thriving as a family. 🙂 We are still a frequent visitor to the Rady’s Children hospital (although not as nearly as much as before!), but my hope is to not visit it at all one day. 🙂

Recently we discovered a lump in ana’s thigh. We still need to get a second opinion from a surgeon, but primary wants to get an MRI of the leg to rule out some serious diagnosis. Getting an MRI at this age would require anesthesia which we would love to avoid. She has gone under so many times already! Ana has been growing so well considering her health condition other than getting hospitalized a few months ago for a pneumonia. We are hoping and praying that the lump on the leg is something benign and would resolve on its own. Please pray for her! God has been so gracious in answering our prayers in the past. After all, Eliana means God has answered! 🙂

Ana’s palate surgery is also coming up. It’ll probably be sometime late this month or early next month. She’s still not been eating by mouth, but hopefully after the surgery eating will be easier for her. For now, the palate surgery is the last surgery planned for her! The cardiologists originally said she would need another heart surgery, but now she may only need a catherization done instead of an open heart surgery! Praise the Lord! 🙂

Ana will be turning one soon.. I can’t believe she is already 10 1/2 months old. Her life since the beginning has been a story of God’s faithfulness in the KO’s family. May God continue to use her to awaken my dull and distracted soul and to remind me of eternal hope in heaven!

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Praise the Lord! :)

Recently Ana started to roll from her front to back.  This was such a huge advancement for her that I cannot even begin to describe how excited we all were when we first saw her do this.  All I can say now is “Praise the Lord!”  Ana has been somewhat slower than other babies in her development but I am thankful that she is getting there at her own speed.  She still doesn’t flip from her back to stomach, but I hope it’ll come soon too.  She really dislikes her tummy time with passion so it kind of pains me to make her do it, but it looks like there is no way around it.  Through her hard work of tummy time, she is now able to push her upper body up using her arms.  She can smile at the same time too if she gets distracted enough.  Most of the time when Nathaniel is around, her eyes are glued to him.  She finds him so fascinating.  I hope she grows up soon so that they can play together.

Another big news for the KO family is that we are in escrow!  I never thought we would buy a place but here we are!  We are thankful that God is allowing us to get a place so close to church and alex’s work.  We’ll post some pictures of our new place once we move in and settle down.

Here is a quick update on Ana:

She recently started to reach out for toys and showing more interest in them.  Praise the Lord that she seems to be more aware of her arms and seems to understand that she can use them to grab things!

As mentioned above, she recently started to flip!  Please pray that she’ll learn to flip the other way too!  🙂

Ana is getting much better with retching but she still retches and throws up a few times a day.  She also has a very tough time eating by mouth due to retching.  Please pray that she’ll learn to eat better by mouth.

Her cardiologist said that MAYBE she would not need another heart surgery!  Praise the Lord!!  🙂  This is a very slight chance, but nevertheless it is a praise.  🙂  The next echocardiogram will be in March.  This procedure may reveal that she may not need another heart surgery.  If it be God’s will, then she won’t have a big scar down the middle of her chest!  🙂  Hehehee!!

That is all for now–  so thankful that I get to take care of such a cute and precious little blob of joy!!

 

 

 

Happy New Year!

Hello everyone  🙂

It has truly been a long time since the last post.  I’ll start off with a really good news.  🙂  The lastest echocardiogram showed that Ana’s VSD’s (ventricular septal defect: the holes in her ventricles) are closing on their own!  🙂  🙂  Praise the Lord!  🙂  So we don’t have to patch up the holes via surgery come this spring/ early summer.  🙂  It seems like her coarctation still needs some work so she’ll need an open heart surgery.  But at least the surgery won’t involve inside the heart and just the outside. 🙂  God is good and He answers prayers.  🙂

Ana blew up in size and she almost looks like she doesn’t belong to the KO family.  I love her little rolls on her arms and legs and even her back!  😀  Thanks to the growth spurt, she doesn’t need her helmet for too much longer.  In about two weeks she’ll get the helmet off.  We are so used to her yellow helmet that when she doesn’t have it on, she looks like a snail without her shell!  🙂  I think I’ll miss her in her little helmet.

Ana’s lip is healing very well– so far she doesn’t have much keloid looking scar tissue, but we’ll have to keep an eye on it.  The doctor told us to keep on massaging the area to loosen up the scar tissue.  🙂

Ana still doesn’t eat by mouth but I am hopeful that one day she will.  Sometimes I find myself getting lazy to practice feeding her by mouth since it’s so much easier to do the routine feeding by the G-tube.  At times it seems almost pointless because I see no progress.  But this is the role that God has given me for now and I must continue on one drop at a time.  I remember spoon feeding milk to Nathaniel when he was 7 months old because he weaned himself and refused to suck from a bottle.  I thought it was a very tedious job back then.  Now I am feeding drops to ana using my finger.  I realize that I had it good with Nathaniel.  🙂

One thing that still bothers me a lot is her retching.  When she retches and throws up, she has milk coming out of her nostrils and mouth and has a difficult time breathing.  It’s a scary thing to see to say the least.  I’m thankful that she has gotten better, but she still retches a handful times a day.  Please continue to pray that she will stop retching and throwing up..

It is still kind of too early to tell, but now that ana is about 7 months old, I am more coming to terms with a possibility that ana is different than what is “normal”.  One of the early signs of mental disability is slow gross motor development.  While it is true that her G-tube kind of got in the way of her tummy time, it is also true that she is lagging behind in terms of her physical development.  I may be thinking too much about nothing significant, but it’s kind of hard not to think about it being her mom.  I’m glad that this is rather a slow process.  God is giving me an ample amount of time to freak out, breathe, remind myself of some Bible verses, calm down, then repeat the whole cycle multiple times.  And through it all, He makes me more like Christ and forces me to trust in Him and not in myself or worldly wisdom.  🙂

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” James 1:2-4

Here are some recent photos of us having fun.

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