Tuesday, October 30, 2007
Since you are praying, I just wanted to post an update on our doctors' appointments. Since my last post, we've seen the neuro-opthamologist, the pediatrician, and the neurologist. We were encouraged to learn that the abnormality in his cerebellum is subtle and on the milder side of the spectrum. Clinically speaking, the doctors think Marcus looks atypical of the syndrome because he doesn't bear a lot of the symptoms that Joubert kids have. None of the doctors can say that Joubert Syndrome is ruled out, but if Marcus does have it, he may have a milder form of it. We will be seeing a geneticist to learn more, and his MRI will be read by two pediatric neuro-radiologists to get their opinion as well. So far, we've been incredibly encouraged by this news.
Right now, along with his hypotonia (lack of core muscle strength) our main concern is Marcus' vision. We learned that his brain abnormality is what is causing his nystagmus (eye movements) and head-shaking, but not his poor vision. The neuro-opthamologist thinks it may be his retina, in which case there is no treatment. However, he has seen some infants develop their vision as late as 6 months. So, he is giving Marcus until mid-December to see if his vision will develop on its own. If not, he will do an ERG to determine if it is indeed a retina problem and to see how severe it is. Right now, he sees light and larger objects without details. If it is his retina that is causing the problem, he will be visually impaired and worse-case scenario, go blind.
The future is a big unknown. We don't know if his vision will improve, if he has Joubert, how much his brain abnormality will affect his physical and cognitive development, if our future children can be at risk of the syndrome, etc. But it's such a comfort that God knows all things and that He'll reveal to us what He thinks we need to know. We are forced to rely on Him, trust Him, and rest in His sovereignty. We are helpless, but that is good because we are waiting on the Lord, who is in control and knows all things. Through this, we've come to know God more. He is such a loving, kind, gracious, compassionate, sovereign God. We are thankful that He has used this trial to draw us closer to Him, which is an answer to many of our prayers for our family.
Many of you have lovingly asked how we are doing. All we can say is that God's word is true and His grace really is sufficient to cover over our weaknesses. Left to ourselves, Mike and I are SO weak, so frail, so sinful, so untrusting, so anxious, so downcast, so thankless. But God has overwhelmed us with His grace today and He's given us a joy that we really haven't known in "good" or "easy" times. Knowing that, we're trusting that God will continue to give us His grace tomorrow, even if it gets harder.
Can I ask for more prayer? Here are a few specific things you can pray for:
1. Pray that Marcus' vision will develop on its own by mid-December and that his poor vision is a developmental issue rather than a retinal issue.
2. Pray that the physical/occupational therapy & vision stimulation will be effective in helping Marcus with his truncal strength and vision. Pray that Marcus will be a fighter.
3. Pray for continued desperation before the Lord, and that we would be pleasing to Him through this time of waiting.
4. Pray that our eyes would always be open for opportunities to use this trial to bless others.
5. Lastly, you can lift up thanks to God with us because we already see so many blessings in this. (Too many blessings to share now. Will make it a separate post.) We don't know what the big picture is yet, but we have seen glimpses of God working this out for good in so many ways.
We are so thankful for you. We LOVE the Body of Christ and He has used you to lighten our load as you carry this burden with us.
Monday, October 22, 2007
Please continue to pray for Marcus as he fights through his condition. We will update you as we hear more from our doctors' visits. Please also pray for both Audrey & Marcus' salvation. This is our greatest desire, that they would know Christ at a young age and that their lives would bring him much glory.
We call this guy "Champ" at home now, because he's a fighter
And this little one keeps us happy because she cracks us up everyday.
Want to leave you with passage that has been a great blessing to us: Hebrews 4:14-16
"Therefore, since we have a great high priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need."
Thursday, October 11, 2007
Friday, September 14, 2007
I called Mike at work to tell him about it. He asked, "Did you take a picture?" Uh, taking a picture is not exactly what's on my to-do list when I'm screaming, looking for a broom, and yelling, "Audrey, get in the living room!". Maybe next time?
Monday, September 10, 2007
We're still waiting on the Lord for a few health/developmental issues for Marcus. Nothing life-threatening or physically painful, but humbling for us as parents nonetheless. But God sure did know how to minister to me by allowing me to hear almost all the messages at retreat. I think the biggest thing I learned from the retreat was that I need to constantly preach to myself with God's word.
Just thought I'd share some verses that have been a huge encouragement:
Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall yet praise Him, the help of my countenance and my God.
For I know that the Lord is great; and that our Lord is above all gods. Whatever the Lord pleases, He does, in heaven and in earth, in the seas and in all deeps.
Blessed be the Lord, because He has heard the voice of my supplication. The Lord is my strength and my shield; my heart trusts in Him, and I am helped; Therefore my heart exults, and with my song I shall thank Him.
And now for pictures:
Marcus & Halmunee
Annabel flew all the way to Cali for Jane's wedding. She was such a servant to us. Pretty much my live-in nanny and housekeeper for a week. Hopefully next time she comes, it will be a real vacation for her.
Does this pose look familiar? Same face from last year, just a bit more hair.
This clip cracks me up in SO many ways!
Monday, August 6, 2007
Audrey has had an unexplainable skin issue for a week and a throw-up issue this weekend and my thoughts ran wild. "What if she got bit by a rodent and now she's throwing up because she's infected with some life-threatening bacteria? What if she never stops throwing up and we have to go to the hospital?"
Marcus hasn't reached one if his milestones: focusing on faces and tracking moving objects with his eyes. So I was thinking, "What if he's blind? How will he make a living and provide for his family if he's blind? What kind of jobs can blind people have? Will Mike be okay if he can't play sports with him? Well, at least he can be musical b/c there are a lot of blind people who are musically talented."
So on and on I go with silly thoughts that stem from an ugly heart. Even IF Audrey is infected by a rodent or Marcus is blind (gosh, that sounds so funny!), I need to trust in the Lord who is in control of all things. The kids and I stayed home from church yesterday to let Audrey recover, but it was good to go to the Word to preach to my heart.
Psalm 31:14 But as for me, I trust in you, O LORD, I say, "You are my God."
Psalm 135:6 Whatever the Lord pleases, He does, in heaven and in earth, in the seas and in all deeps. (Thanks to a dear friend who shared this verse with me.)
Whatever the situation, big or small, I need to trust in God because He is in control and does what He pleases. He is in control of all the things I want to have control over because He alone is God. I am not God and my job is to put my trust in Him, to find refuge in Him with a peaceful and thankful heart. Even writing this, I'm so rebuked because so many people have those big issues to trust Him in. I'm not sitting next to my child in a cancer ward or caring for a disabled husband or battling physical ailments of my own. My life is so full of blessing and shelter, yet I STILL have a hard time trusting. That's how weak my heart is. But thanks to a merciful God who lovingly places tiny opportunities like these into my life to remind me that He is God.
Wow, thanks for reading. I'm sure there are others out there who can relate, right?
Well, here are some recent pics of the kids. I'm so thankful for them and for all the ways God uses them to keep my eyes on Him.
Want some applesauce?
So far, Audrey hasn't asked us to send Marcus back. In fact, it's been just the opposite. She really dotes on him, kissing him a lot. For some reason she keeps saying "Morning, Marcus" throughout the day. Maybe because he's always waking up from a nap.
Here's our precious little fella. There's been a sweetness to having a son that I never expected. I guess it's kind of like the sweetness between a father and his daughter.
Sunday, June 24, 2007
He looks a lot like my dad, just like Audrey looks a lot like Mike's dad. My parents are flying in tomorrow morning and I can't wait for them to see their two grandkids.
Can't believe this girl is a big sister now. She got to spend lots of time with Daddy the past few weeks. I think it was really special for the two of them. She's definitely Daddy's little girl.
Thanks everyone, for your prayers, emails, calls, visitations, gifts, and especially...meals! We've been so ministered to by all our friends and family and we're really thankful. Thank you!
Amber & Sherie...I know you two are just about ready with your little ones. Can't wait to meet them!
Thursday, June 7, 2007
Thursday, May 17, 2007
Large #8 with tripe, tendon, rare beef, other beef Additives: basil leaves, but no sauce to soup (to keep the flavor pure) Dips beef and tripe, etc. into dish with mixture of sriracha & hoisin For sides: raw jalepenos and onion mixture (refer to recipe below) Technique: eats all noodles first, then orders extra side of noodles to add to bowl while soup is still hot.Sue
Large #2 with rare beef Additives: extra cilantro & sprouts, one basil torn up into pieces, no sauce Dips beef into dish with 1/2 sriracha 1/2 hoisin, but not mixed together Sides: sprouts & onion mixture Technique: eats noodles & beef together while adding sprouts continuously to add crunchinessAudrey
Small bowl of Mommy's #2 Additives: sprouts Sides: none Technique: tries to eat noodles with fork but then gives up and uses her hands, places end of noodles into mouth and then slurps the rest, lifts bowl to mouth to drink the soup occasionally and then asks for more.Onion Mixture
Ask for extra side of sliced white onions Add juice of 1 or 2 sliced limes Add few spoonfuls of pho broth Squirt lots of sriracha on top and mix well with chopsticks
Our family pho history/background:
When Mike was a bachelor, he fell in love with pho. The broth & noodle combination really satiated his appetite for a "home-cooked" meal. It being inexpensive also encouraged him to buy pho several times a week, and sometimes twice a day. He's been hooked ever since. Now, as a family, pho is one of our favorite things to eat together.
During this pregnancy, pho has not tasted as good, so we haven't had it as often as before. In fact, Mike had gone a whole 2 months without pho for my sake. (What a husband!) However, last weekend, while I was away for most of the day, he had bonding time with Audrey at the beach and then they had a pho date for lunch.
Audrey is truly a girl after her daddy's heart.
For those of you who don't really like pho, I recommend persevering. Keep at it, try new (clean) places, and I guarantee you'll fall in love. Even Pastor James likes it now! Come on, Sanchez_Familia, you can pho it too!
Wednesday, May 2, 2007
He was lurking behind the bushes by our front door when Audrey and I got back from the grocery store today. As I let Audrey into the house, I saw him jet inside. This lizard gained some weight since we last saw him. Not only was he bigger, but wilder, faster, and more feisty. Glory and praise to our sovereign God who providentially had a neighbor walk by just as I screamed. He asked if he could come inside to help, to which I responded with a desperate "yes!" and then I got him a broom. As I watched him battle the lizard, I don't know what I looked or sounded like, but Audrey could sense my fear and asked me to hold her. So the two of us hid out in the kitchen while my neighbor tried to sweep the creature out the front door. It was quite a fight, though, because this guy did NOT want to leave. After a few minutes, my neighbor (who worked up a sweat) got the lizard out and I thankfully shook his hand and expressed my deepest gratitude.
Whew! What would I have done if my neighbor had not walked by? I am SO thankful to the Lord for two things today: helpful neighbors & brooms.
I wonder when Lizard Jr. will make his next siege on our house. What if next time he has kids and brings them too? I must not be anxious. The Lord has delivered me 3 times already. I must trust in Him.
My doctor told me today that Baby's head is down now (which explains some of my achiness) and that he's a pretty good-sized one. He's due to arrive next month, so I guess God is putting his finishing touches on him before he joins the family. We're really excited to meet him! I'm a little anxious about sharing a room with him in the beginning, especially since Mike has to go to work. But hopefully, Mike's selective hearing (which all father's have) will kick in and he'll get enough rest for his work day.
Mike's mom came to visit from Maryland and spent the past 2 weeks with us. She left this morning and thankfully I was wearing my sunglasses when I dropped her off, because I got teary when we said our good-byes. Before marriage, I never thought that I would cry when saying bye to my mother-in-law, but God has blessed me with such a godly, loving, selfless, considerate mother-in-law, that it's always hard to part with each other especially after a long time together. Thinking about Mother's Day coming up, I'm so thankful for my own mom and for Mike's mom, who are both such blessings to our family.
Here are some pictures of our time together:
Grandma Lee's favorite activity - feeding Audrey.
Sporting the new shades that Gomo got her.
Sunday at church with beef jerky
Redondo Beach Crabhouse a.k.a. Korea
Next month, we get to see my mom who will come from Hawaii to spend time with TWO grandkids. Yay!
Thursday, March 29, 2007
Anna: Um, Mrs. Sue?
Me: Yes, Anna. Hi!
Anna: Uh, Noelle (her baby sister) had one of Audrey's crackers.
Me: Oh, that's great!
Anna: (Very concerned.) And after she ate it, I smelled her breath and it didn't smell good at all.
Anna: (Very perplexed.) What kind of crackers ARE those?
Me: Oh, they're a cereal called Mighty Bites (one of those Kashi cereals).
Anna: Well, we have Cheerios at home and they don't make your breath smell bad. (I could tell she was trying to be sincerely helpful.)
On a side-note, this will be of no interest to many of you, so you may elect not to read on. But as a mom, I have a dilemma. My 20-month old is now in size 5 diapers! I was in denial for a long time, but after leaking every single day (sometimes twice a day) even after diligently changing her diapers about every 2 hours or so, I finally had to graduate her to a size 5 to wear at least during her naps and overnight. And people, diapers only go up to size 6 and she's not even 2 years-old yet! I guess poddy-training will have to come sooner than expected. Either that, or I may have to resort to cloth ones once she grows out of a size 6!
I don't get it. I feed her whole grains, no junk food (except on rare occasions or when other people feed it to her without me knowing), no juice, and I've put her on lowfat milk. She eats the regular 3 meals and two snacks (of whole grain crackers or fruits/veggies) a day, and we often say "no" to her when she says "more", which she says about 20 times daily. She doesn't sit still, gets sweaty from running around the house in circles, but she has always been in the 90th percentile of weight and height since she was born. Everyone says "Oh, she'll lose the baby fat soon...oh, she'll thin out before you know it." But oh my, she is a little giant. If you opened her up, she'd be pure, solid, dense, heavy chocolate. Not just a hollow shell like those Cadbury bunnies.
So, this little 30-pounder is now forced to walk herself everywhere b/c Mommy can't carry her PLUS the extra 20 pounds of baby weight up and down the stairs anymore. If only I can somehow teach her to get into her carseat and into the shopping carts by herself, I'd be set.
But don't get me wrong, I adore every last ounce of my little, I mean, big sweetheart. Even if she is harder to carry than a huge bag of rice. So if you want a workout, just come over and do lunges with Audrey. That will firm you up like no other!
Here she is, doing what she does best:
Question: ARE there some of you out there who feed her junk food every sunday behind my back? Is it because of you?
Monday, February 12, 2007
Tuesday, February 6, 2007
Having tea (or gathering around any type of food) is much like sports for men. It's a means for women to gather together for fellowship and bonding. It's been said that a sports injury is equivalent to a woman not being able to talk, because that's how women bond. All men need is a ball...any kind of ball. All women need is food...any kind of food. But of course it's more fun when it's a bunch of yummy treats on a pretty table. The upside for women is that we can't get injured and potentially need surgery and then be out of fellowship for a while. However, we do run the risk of getting fat, but I think that's a risk we're all willing to take. Anyhow, I'm glad that we women of Irvine Flock love to gather together to talk and eat because I've thoroughly enjoyed getting to know each of them better.
We met for about 2 hours and our conversation was facilitate by each of us answering questions such as:
Who or what makes you laugh the most? How has growing up in your family influenced who you are today? What is one goal you have for 2007? If you could choose one yummy treat to eat everyday and it would have zero calories, what would it be? What is your biggest social defect (such as not being a good listener, talking too much, etc.)?
Everyone was so transparent and I think we all left with a better understanding and greater fondness for each other. Here are some pictures of the tea times we've had.
By the way, Christine brought her huge and yummy trifle, for which I was very thankful. It also caused a bit of conflict in our family because I forgot to save some for my husband. Uh oh!
Wednesday, January 17, 2007
While uploading photos from our trip as I was listening to the sermon, it occured to me that about half of the pictures were of food, or of us eating our food.
For example, here's what we had for breakfast.
We went to the SD zoo, but Audrey was more interested in her raisins than in the animals.
One night, I thought I'd have a salad as a light dinner. If I had only known that I would get 1 prawn, a sliver of avocado, 4 leaves, and 1 thinly sliced raisin, for only $1 less than Mike's huge carne asada nachos. It was really weird & disappointing.
Finally, some non-food pics...
I know we Lees love food, but Pastor Marcus' message was so good. There is a difference between enjoying our food (and everything else He's given us) to the glory of God, and being ruled by it or indulging in it in excess. Wow...and that was just one point in the sermon. So much more to reflect on and examine.