Thursday, June 25, 2009

The Big Switch-A-Roo

Well it's almost July and time is just continuing to fly on by. We are certainly enjoying the cooler weather and I try to take Sue out for walks as much as I can. I wrote a few weeks ago that Suzie has been waking up a lot earlier...like 6:00am instead of 9:00am! So we decided this week to switch rooms with her and put all her stuff in our bedroom and our bed in the little cove in the back of our living room. So far, this is working out much better and Suzie is able to sleep in later now that she has a door to shut out all the morning noise (eh hem...Kyle eating cereal and getting ready for school:) It took her a few nights to get comfortable in her new surroundings, but last night she went down without a whimper and woke up happily at 8:30am:) Here are a couple of pics of the new set up.





Suzie is wearing a combination of 3-6 and 6-9 month clothing and is still in a size 2 diaper. One of her new things is that she wants to roll over and explore things when we're changing her diaper. This can make changing a poopy diaper an even greater challenge!



I also wanted to give a brief update on her development. Here are some areas where Suzie is falling behind and we are working on catching her up in therapy:
-sitting up by herself (she can sit up for 10-15 seconds but she should be able to sit up and play by herself for long periods of time)
-weight bearing on her arms
-fine motor skills (grabbing, shaking, turning objects) with her right arm
-some fine motor skills on left side (using her thumb and index finger to grab)
-more consonant sounds (she does a lot of "b"s but not "g"s and "m"s etc.

Here are some things we are working on that she's not necessarily behind in for her adjusted age:
-relational play (getting her to brush a baby doll's hair and feed the baby doll a bottle)
-wave bye-bye (she loves to look at my hand when I wave and will occasionally move her hand as well, but not waving so much)
-crawling (sitting is the first step, but we're trying to get her into crawling position to help her learn to put more weight on her arms)
-taking rings off a ring stacker (she can do this but forgets and has to relearn every time:)
-pulling a cloth off of a hidden object
-give us an object when we tell her to

Here are some areas where she is right on track for:
-rolling from back to tummy back to her back (she is a rolling machine!)
-pivoting when on her tummy to face the direction of a toy (or mommy:)
-passing objects from one hand to the other
-pulling multiple objects out of a bowl
-banging two objects together
-bearing weight through her legs
-responding to sounds
-tracking objects and looking for a dropped object
-eating puffs and feeding them to herself (we introduced the puffs to her last week and today she started feeding herself for the first time! Here is a video of her feeding herself)
video

Wednesday, June 17, 2009

Yippie-Yah-Yay Mini Sirloin Burgers

There is this Jack-in-the-Box commercial that makes Kyle and me laugh every time. It's advertising their mini sirloin burgers so they have these little people roping miniature cattle and they sing this song in really high little voices. The song will get stuck in our heads and we'll sing it on occasion. Well just recently Suzie has decided that she really HATES that song! She will make this pouty little face and if we keep singing she will start crying. It's so funny.

Things are going well here. Suzie has now completely recovered from her surgery. She has decided that she wants to wake up earlier now, against my pleading for her to sleep longer:) Two of her therapists recently informed me that when she turns 1 (next month!) they would like to increase her therapy to two hours a week. She is doing really well with her left side but her right side is still behind. This is keeping her from sitting on her own for very long and also using her fine motor skills on that side. That means we will have five hours of therapy every week! As if we're not busy enough:) Here are her 11 month stats and percentiles for her adjusted age of 8 months:

Weight: 16lbs. 4oz. (15th percentile)
Height: 27 1/2 in. (60th percentile)
Head: 17.9 in. (90th percentile...down .3 inches since before her surgery!)

Other than that, we are doing great here! Our really good friends, Andrew and Kim Callaway, recently moved up North to be a youth pastor at a church in Redding, California. We really miss them but are so excited for them too. We will be transitioning to High School ministry this month to get some experience in youth ministry ourselves. And Kyle is officially candidating! He graduates in December and we are hoping to find a church to go to as early as January 2010. We are in the very early stages of talking with a church in San Antonio, Texas and look forward to visiting the church in the middle of August to see what the Lord might have in store for us.

Here are some more pics of our precious girl. She continues to bless us more and more each day and we continually praise God for her!


Wednesday, June 10, 2009

Recovering

Suzie has been doing very well the past few days and is very glad to be out of the hospital. She doesn't seem to be in all that much pain which is a huge blessing. Her main problems when returning home were eating and sleeping. She was very tired but had a little trouble staying asleep and would cry in her sleep which was very sad. She also had not been eating very much and was throwing up for a few days. As of today, she really seems back to normal! Her bandage fell off today and I think the incision is bothering her a little, but other than that, she is doing so well. We praise God for the quick surgery and recovery and are so thankful for all of your prayers! Here are some pics of her bandage and incision, as well as a few that our friend Kim took before the surgery.









Friday, June 5, 2009

Praise God

Thank you all so much for praying for us this morning, the past week, and really the past year! We continue to be amazed by God's kindness to our family. I was very emotional when it came time to let Suzie go into surgery. I just wanted to hold my baby close to me!! The surgery went just as long as they had predicted, and the problem was exactly what we prayed for. The catheter going from the ventricles to the reservoir was a little clogged, so they simply replaced it and sewed her back up. She was crying a lot when we first saw her and her voice was a little hoarse from being intubated. She also has half of her beautiful hair shaved off:( They gave her a little morphine to help with the pain. She is just exhausted but being the very finiky sleeper that she is (she wants to be in her crib and wants to be swaddled tightly in the her dark, quiet room with the fan running) she isn't sleeping too much. She finally took a little bit of formula and hopefully will go back to sleep soon. We hope to be released tomorrow!

Thank you again for your prayers. We feel the love of God through His children and are so blessed to have such amazing support!

Thursday, June 4, 2009

A Few Details

I thought it might be helpful for me to provide a few details regarding Suzie's surgery tomorrow. We have to be at the hospital at 5:45am to check in and take care of all the post-op business. She cannot eat anything after 10:00pm tonight, but she really doesn't enjoy eating all that much so that part shouldn't be too bad:) At 7:30am, they will put Suzie under anesthesia and begin the surgery shortly after. They will begin by going into Suzie's original incision in her skull. They will have to make it a little larger in order to have access to the valve. The hope is that they would find a little debris in the valve or tubing on the ventricle end, so that they can simply clean it out and sew her back up. If that is the case, she should be out of surgery around 9:00am. If there is nothing wrong with the valve or tubing, they will have to decide how to proceed from there. I'm not entirely sure what they would do, but I believe they would try to replace the tubing that goes into her abdomen or have to replace the entire shunt. This would put her in surgery a little longer.

She will have to be intubated while she is on anesthesia, but they will extubate her as soon as she wakes up and may or may not require supplemental oxygen (nasal cannula) for a few more hours. They expectation is that she will only have to remain in the hospital for one night and be able to come home some time on Saturday. We will be able to stay the night with her (praise God!), but she will be sharing a room with one or two other children so it will be a bit crowded:) Of course if they end up replacing the shunt entirely, she may have to stay in the hospital a little longer.

We are doing well here and trusting in God to get our baby girl through another surgery. I think the hardest part will be seeing her in pain:( Again I am reminded how amazing it is that God would crucify His only Son whom He so loved to pay for the sins of those who rejected Him. What a gracious God we serve! I cannot even imagine willingly putting my child through so much pain to save even someone that I love, let alone an enemy. It is such a great reminder of how gracious, loving, and merciful our sovereign God really is. We have a confident hope that He will get us through this next little bump in the road and bring our baby girl safely home with us soon.

We so appreciate your prayers for us! Here are some specific ways you can pray for us this weekend:
*That when the doctors do the surgery, they would simply have to clean the valve and not have to redo the entire shunt.
*That we would trust God and find joy in Him no matter what happens.
*For us to be a testimony to the doctors, nurses, families at the hospital, and unbelieving friends that we have.
*For us to have opportunities to proclaim the gospel and to be bold in our faith.
*For Suzie to recover quickly and be able to come home on Saturday.

Here are a few pictures of our very big girl!