Saturday, December 25, 2010

Merry Christmas!

All is well with Sara Rose and her family. We have had a wonderful Christmas and past few months since our last update. As you can see in the pics, she is doing great and they only tell just part of the picture. She is growing up into quite a young little girl with a ton of personality. Her sisters are having loads of fun with her and she with them. She basically follows them around all day, and they like it. And when they don't, she will wander down the hall and find a bedroom door closing in her face. To which she usually replies with a grunt of frustration.



THE LOOK

This is the look Sara began to give us around thanksgiving and has proceeded to give just about anyone and everyone who walks up and talks to her. She will sometimes hold it for several seconds and then bust out with a big smile. Or, she will just give you the look until she decides not too. She will also sometimes move through her routine of faces. She will give THE LOOK, then make her an O with her lips and face, then blow at you and has added sticking her tongue out. Very funny.

I tried to capture some of her personality and looks on a few short videos. You can find them here and here.

Developmentally, Sara is doing great. She is walking so well her therapy has moved from weekly to monthly. We are working more and more on fine motor skills and trunk strength. She is getting stronger and stronger each week. Her docs are happy with how she is growing, she is right about average in height and weight for an 18 month old. It takes about 2-3 years for a preemie to catch up, and she is right there already. She is communicating more and more, she has words and can say syllables for mom, dad, sissy, shoe, sock, paw paw (not maw maw which drives maw maw nuts), more (her favorite word), no (again - she is very clear when she doesn't want something), and more that I can't remember off the top of the head.

We are noticing her remembering things done days before more and more. Remembering how things are done, where things are. She is stacking blocks with help, but still loves to unstack them the most with a violent giggle.

What captivates us the most about Sara is her charming personality. She is just so lovable, sweet, and funny. She loves to interact with everyone. She walks around laughing and squealing everywhere. And seems to know she is funny and likes it. It's hard to sum up all she is doing in a few paragraphs, just know she is doing wonderful. Thanks for your continued interest and prayers. We are having a ball!

Playing in the leaves with big sisters.


A little tiara that stayed on her head for long enough to snap this, a few seconds later it was coming off.






Her sisters are supposed to be folding towels, it turned into a wrestling match. I'm not sure who is winning.


This started so simple, playing with Sara on my stomach that turned into a sister dogpile.


Tuesday, September 14, 2010

Two Steps Forward, No Steps Back

Hi again from Sara world. The little gal is just improving by leaps and bounds. She took her first two steps this past Saturday night. We've been waiting for it. She has continually gotten stronger and closer to walking. She started standing up on her own with no help. Then she could walk with you holding one hand. Then Saturday night she took a little step to balance herself, and then one more to the cheers of her family.

As with any kid though, she can get around faster by crawling and so she still prefers that. In fact, she was all the way in the back of the house with Jennifer one morning while she got ready, heard Abigail playing the piano all the way in the front of the house and took off to hear the music. She loves to dance and bob her head to music. Trying to get that on video. Especially to Barney songs on TV, much to the chagrin of her older sisters who wouldn't be caught dead watching the purple one, even though they could sing all his songs 3 years ago. Kids....


Sara was released from seeing the heart doctor earlier in August, one doc we never have to see again unless there is a problem.

She is also communicating more and more. Several new sounds this week. She has little sounds and words that she uses and we are learning what they mean. In fact, Jennifer has been teaching her cold. Touching something cold to her, saying brrr cold, making a little sound with her lips. Well, Sara will then blow through her lips making them flap together for cold. Yesterday, grocery shopping, Jennifer looks down at Sara in the buggy, she has her face planted in a bag of frozen corn on the cob and is making her sound for cold. Very funny.


This kid loves to eat. Doesn't have any food allergies so far, and has started drinking milk. Of course with your third you are much more lenient than with your first, so she has eaten more ice cream and candy than our other two ever dreamed of eating at this age. And you should see Sara go when she gets some sweets in her mouth. Giggling, laughing, smiling - how can you not keep them coming.



Contrary to what you may think with us having a blog filled with pics, we are actually not a very good picture taking family. And now that life has become the normal good busy, not the hospital bad busy, we are back to our non-photogenic selves. So I tried to take a bunch last night. And she was not too impressed with the flash.


By the way, these pics were taken around 10:00. Sara has 7 teeth and we think she is working on some molars, so we are in full-bore-teething-lack-of-sleep. Awake from 9-1 last night.
Yeah. fun. We actually have a few cute videos of her eating a piece of chocolate and clapping with joy and throwing all of the clothes out of the laundry basket. But I can't get the technology to cooperate. I'll figure it out.



Summer time horse lessons, leave house at 7am, Sara plays outside in sun during lesson, and this is what you get on way home. Tooooo tired. I am quite sure Jennifer wasn't taking this pic while she was driving. I am quite sure she got Abigail to take it. Maybe if I say that over and over it will come true.


Waiting to take CT Scan one morning. She couldn't have anything to eat and just could not figure out why we were not giving her a bottle. But thankfully, she was still enough she didn't have to be sedated and got to eat really soon after this. The results of the CT scan were great. The brain has developed a whole lot since her last scan. The Neurosurgeon was very pleased, we don't have to go see him for 6 months!

Just a couple of stories that we get every now and then that remind us of how much God has blessed us with Sara and how far she has come. One nurse who had Sara her first few nights in NICU after she was born ran into someone a few weeks ago who sees Sara often. The nurse asked - Is Sara crawling yet? This person said - Crawling? She's about to start walking! Amazing, said the nurse. Her first few nights this nurse thought Sara wouldn't make it at all or would have severe cerebral palsy.

One heartbreaking sight was the day she took her CT scan. There was another mother there whose son was 4 and had the same degree of brain bleeds as Sara and was not able to walk yet or communicate well. He was born a few weeks earlier than Sara. He had a twin sister who was still not able to sit up. And while our hearts were broken for this mom and praying for her, we were overwhelmed at how much God has blessed us. Why us? Why has He been so good to us? I don't have the answer. But I will sing His praises and tell others of His grace, mercy, and love. Seen partly through Sara. Seen fully and gloriously through Jesus and the cross!








Sunday, July 25, 2010

Crawlin', Cruisin', and Mission Trippin'

Cute and...

....mischievous - scary combination

The Fun Times with Sara continue. It's been a great summer and Sara continues to thrive. So much improvement to speak of, I hope I can remember it all. We got 4 teeth, about to be 5. Doesn't matter though, she quit eating baby food a month ago. She's basically eating whatever in small bites and gumming it to death. She likes cheese and yogurt, so no dairy allergies. She can also eat rice, so no rice allergies. She likes most of what we give her. The only thing she really turns her head at is anything she can't chew, like already mushed up. She loves oatmeal, buttered bread and jelly, and fruit bars. And ice cream and a little bit of chocolate.

Sara is also crawling all over the place. She can easily pull up on anything and when she is up she likes to cruise. She is working on standing up on her own without holding on to anything and may get that any day. Once she stands, she will let go and can balance for 5-10 seconds. We are very pleased.

As a family we went with a big group from our church on a mission trip this summer. We got to go and help a church put on a Vacation Bible School. Sara did great. Most of the pics are from the trip. Great week for our church and our family. The kids were awesome, all of them.

Enjoy the pics, thanks for the continued prayers. Just keep asking God to bless with health and development!

Praise the Lord! For it is good to sing praises to our God; for it is pleasant and a song of praise is fitting. Psalm 147:1



See my teeth! Man do I get some good food now!





Dad's job while mom teaches VBS on the mission trip - pour yogurt on my face and then rake it in my mouth with a spoon.

Count Sara - our little vampire. Thankfully this one sleeps all night.





Playing with mom at the block Party



Visiting the swamps of La on the mission trip

Sara's sisters and Abigail's sense of humor

Saturday, June 19, 2010

Summer Fun

What a cutie! These were taken at Vacation Bible School, thanks Stephanie


And I know I'm cute, that is what's so ridiculous


All of us except Abigail at VBS. Our VBS blessed us this year by making Sara the recipient for the missions offering. It was unexpected and very generous - thank you all very much!


Wait, didn't June used to be a month? Now it's like a day, maybe two. Wow what a fast month! Sara did great through vacation and Vacation Bible School. And has continued to progress well in her development. She got several good reports from various medical folk:

Assessment Therapist - she sees her every six months. When she assessed Sara last August Sara was rated as a 3 (which is the worst) in every category of development. Now she has no threes! The therapist was very very happy.

Pediatrician - he thought we had switched docs it has been so long since we saw him. He couldn't believe how far she has progressed since he saw her in March. He was really encouraged. He was hoping we could take her off phenobarb which is supposed to help with seizures. But after the blood work, her levels were not where they need to be to take her off. Even though she has never had any seizures, they want to be cautious, so we will check again in six months.

Jennifer had to take her to a lab to have blood work done. The first time they tried an IV and her veins are still shot from her hospital stay in February, they could find nothing. So after poking in her and trying for a while they quit. They would then have to prick her thumb and squeeze out enough blood to check phenobarb levels. But, they did not have the right equipment. Jennifer goes back with her a week later, and while the nurse pricks and squeezes her finger, Sara is smiling at him. When does she cry? Only when he tried to put a band-aid on her. Funny kid.

Ultrasound Technician - Sara had an ultrasound of her heart done as a yearly check up with heart doc. Jennifer hasn't seen the doc, but the technician said it looks perfect. No holes, nothing irregular. Maybe, just maybe we can cross the pediatric cardiologist off our doctor list. We'll find out in August. Why do the ultrasound in June and see the doc in August???? U got me

Sara is sitting up, crawling around (military style), turning over, and can sit up on her own from her tummy. It is amazing how much more able and strong she is. She is still eating great, sleeping great, and has one of the most laid back dispositions of a baby we have seen. She is easy going. But yet she is also immensely curious. If you are holding her and eating something she stares at your mouth with an intense expression like whatever we are doing and whatever is in our mouth is the most amazing thing she has ever seen.

One person (don't remember who) told us she was surprised how happy and laid back Sara was. Many babies in her situation are quite fussy and unhappy most of the time. We chalk it up to the Grace of God, because if she was fussy alot we would always be wondering and worried what's wrong - shunt? bowels? sick? In fact, Sara fought off her first official sickness a few weeks ago. Wasn't serious enough to take her to the doc, but there was snot and a cough for about 2-3 days. No fever. But because of her easy going disposition, we knew something was wrong. She was whiny, wanting to be held all the time, fussy. Exactly like our oldest was at that age, but this was not normal Sara. But she fought it off and was good to go.

Teeth and crawling are the biggest things she is working on. We think she might cut 4 teeth at once. All she has is her little two bottom middle teeth. But her top eye teeth are about the break the surface any day. Didn't know you could get eye teeth before middle teeth. Oh well, Sara doesn't seem to like the word normal. Won't be long before we post a pic or video of her crawling. Enjoy these.

Take a nap poolside on vacation - is there any better nap than this?


Happy Birthday to me!






Birthday cake in a pinch on vacation when you want to be careful what she eats because of allergies. So we have angel food cake, vanilla frosting, and sugary sprinkles. And you know, it wasn't half bad. Except for our 2 1/2 yr old nephew Alex - he said, "I don't like Sara's cake." Honesty - priceless.


Enjoying the beach before the oil arrives


video

Sara enjoying her birthday cake and song!

Tuesday, May 25, 2010

Happy Birthday Sara!

Driving to the beach! Whose gonna pull over this cute kid?


One year old!

Man oh man, what a year! How amazing, terrifying, difficult, yet thrilling this last year has been. It's strange the emotions and memories that come flooding back to you from last year.

Last May 25th was Memorial Day, we had just returned from a week on the beach. This May 25th we are on vacation on the same beach, in the same condo. Instead of Jennifer being big and pregnant (I will get punched for inserting the word big), we have this little miracle child who brings such delight and joy into our lives each day. Well, I guess we have three of those, but you know what I mean.

Jennifer recently reminded me of a conversation she had with one of the hospital staff who was present during Sara's first few hours. She was telling Jennifer how everyone present was not hopeful Sara would even make it through the transport across town to the more intensive NICU. I remember that scene. The NICU doctor was going to allow me to come back and take a few pics before they transferred Sara. As I walked back everyone was standing around looking at the nurses and doctors trying to prepare her for transfer and the only word I could use to describe that scene was somber. Sad. Despair.

I put a collage of pics from each month just to remind you all of how far Sara has come. As I selected and loaded each one, I could hardly believe it. In so many ways it doesn't seem real. Yet, it has defined our lives for the last 12 months.

Three times we were told - things don't look good. Last June it was, she could die at any moment. One doctor told us in September, if you baptize your children, you might want to go ahead and get that done. In late January, when she had her second infected shunt, as the room filled with doctors and nurses poking and prodding a screaming baby, I stepped into the hall to text Jennifer who was home with our other two. I could only text, I couldn't emotionally talk about the frustration and aggravation of having to go through another lengthy hospital stay or the fear about how bad off she was again.

Yet, those darkest days have been overwhelmed by the glorious light of God's grace in healing and sustaining Sara. It reminds me of what Paul said in 2 Corinthians 4:17 "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison" The grace of God in healing Sara makes the dark days seem so light and momentary. Just as the reality of heaven will make our short time in this life seem so quick and light. Even when these days are dark and heavy, that's the hope we have because He has "shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ (2 Cor 4:6). So, no matter what we face - we can be afflicted in every way, but not crushed, persecuted, but not forsaken, struck down, but not destroyed - because of the life we have received in Christ (2 Cor 4:8-10).

We get reminders from time to time how different this could have turned out. One mom spoke at the March of Dimes walk about her baby who lived for about a month last fall. We have a different level of empathy for someone like that now. Praying that mom would know the strong presence of God who walks with us through the valley of the shadow of death.

I guess I sensed God's strong hand the most during the last year on those three occasions when it was bleakest. As I drove home from the hospital trying to live in the tension of a grieving, hurting father and a responsible, get things done father, I actually began to plan out funeral services for Sara. And as I imagined in my mind the scene I dreaded, God's presence was strong, comforting, and a treasure to my heart.

All that to say this - our faith in God that remained intact was not the product of the situation turning in our favor. God did not acquire our loyalty and love because Sara is healthy, happy and whole one year later. Our faith is the product of who God is. Good. Sovereign. Gracious. Merciful. Loving. Powerful. Wise. None of those qualities about God would have changed if Sara would have died or been severely handicapped.

God acquired our love and loyalty when He left heaven, came to earth, took on flesh, lived a perfect life, willingly died on the cross, and rose from the grave. He lived the life we couldn't, died the death we should've, and conquered our greatest enemies - sin, death, Satan. When that glorious reality took root in our hearts at different times in our past, we came alive spiritually, we went from being the enemy of God to being the child of God, and he turned two rebels into two worshippers.

By God's grace, Sara lived. And now thrives. And that only gives us one more reason and opportunity to sing His magnificent praises. We have tried to do that through this blog over the last year. As well as make prayer needs known. I hope that has come through. Thanks again for walking with us - your encouragements and prayers have been a gift to our family. Thanks for being so generous.

Now, back to vacation. A friend of ours, Ms. Patti, gave Sara her first birthday gift a few weeks ago. It was a sweet card and included money for milkshakes. We'll be taking her up on it on vacation at our favorite milkshake place. It's been a milkshake year for sure!




















Praise the Lord, all nations!
Extol him, all peoples!
For great is his steadfast love toward us,
and the faithfulness of the Lord endures forever.
Praise the Lord!
Psalm 117