8 Months

Happy 8 months baby girl!  What's up with Grace these days?  Well, she is in size 12-18 month clothes, and she is wearing size 4 diapers.  She is finally liking fruit!  She still loves her vegetables, and will sometimes eat 1.5 things of vegetables.  She is eating about three 6-ounce bottles, with sometimes one to two 2-4-ounce bottles after her food.

We changed therapy groups, so now she is receiving both physical and occupational therapy!  Changing groups was the right thing to do for Grace.  We are very thankful for our therapists, and Grace is making great progress with her development!  Before OT, she really didn't use her hands much, but now she is using them so much more!  She can sometimes hold in her paci, and recently for the first time ever she put her paci back in on her own!  That was a big milestone!!  She is also rolling all the time!  She can roll from her back to her tummy.  She is also really trying to sit on her own!  She is not quite there yet, but she is making lots of progress.  She is also focusing and following better than ever!

We also had a small vacation...we took Grace to the beach.  She did NOT like the beach...it was way too sunny and windy for her, but maybe next year she will like it!  Grace also celebrated Halloween by being the most beautiful ladybug I've ever seen!  I wish I had gotten a picture at our church's Paloween celebration when Grace got to see her Mamaw Rita, her Aunt Susan, and her Aunt Robin!  :)  They love Grace so very much, and we are so thankful for them (Mamaw Rita keeps Grace when I work).

Thank you all for your love and prayers for our baby girl!  Please join us in prayer for her!  Here are specific prayer requests for Miss Grace: the she would continue to make progress with her developmental milestones, that her vision would continue to improve (we have another vision appointment next week), that her shunt would continue to work correctly and remain infection free (we are almost past the 6 month period where she is most at risk for infection), and that she would continue to bring others closer to Christ.  We are so proud of our biggest blessing!

Half Year

Oh my goodness...my baby girl is 6 months old!!!  6 months...that's just crazy!

Here are her stats from our appointment with Dr. M, her pediatrician:
-length: 25.5 in (50%tile)
-weight: 18 lb, 2 oz (>75%tile)
-head circumference: 39.25 cm (<5%tile)

No, you can't put Grace on your table at Thanksgiving.  :)  And although her HC is <5%tile, it is still growing, just on it's own curve right under the "normal" curve (around the 2%tile).

Some exciting new developments...Grace is rolling!  She can roll from her back to her sides and then to her tummy!  She is also "talking" more and more.  She sucks her thumb (left hand) often.  She is continuing to make slow improvements with therapy.  Also, most recently she has been consistently looking at me and smiling.  You do not know how much that blesses my heart!  Before now, she has mostly just smiled at hearing my voice.  So it seems her vision is improving!!  Thank you, God!    

She is in size 3 diapers, although I recently bought size 4s because I think we will be moving up soon.  She is wearing mostly size 9-12 month clothes. She is eating about 3-4 bottles a day and 2 "meals" of stage 2 baby food.  She likes apples, pears, prunes, carrots, squash, and sweet potatoes.  It seems she likes vegetables better than fruits (squash is by far her favorite).  She must take after her daddy in that area. 

We saw Dr. B and our palliative team yesterday just for follow up.  I love our palliative team!  They give us so much support and I really like that they look at Grace with a different set of eyes.  There was really nothing new regarding the appointment, but we did get referrals for another vision evaluation (with possibly vision therapy in the future), and for another therapy group. 

We also saw Dr. P (Grace's neurosurgeon) today for follow up from her shunt surgery.  She had a CT first and the appointment second.  Dr. P said her CT scan looked "perfect" and that she is doing great!!!  We will follow up again in 6 months, when Grace will be almost 1! 

Finally, I love this song!  I just listened to it for the first time today.  Grace, you were meant to be!

So how can you continue to pray for our sweet girl?  Pray that her shunt would continue to remain infection free and that it will continue working.  Pray that she would continue to make progress with her therapy.  Pray that she would continue to meet her developmental milestones.  Pray that her vision continues to improve.

Thank you for loving our sweet girl and for joining with us in prayer for her!

Sawyer

Please join me in prayer for Sawyer Dykman (here is a link to their blog)!  He is scheduled to have surgery this morning at 9:00.  His momma Ashley is a dear friend of mine...I met her when we learned of Grace's diagnoses, and she was a huge support to me in the beginning of our journey (as well as now), and I am blessed to know her and her family.  We love you, Sawyer!

Wow Five Months

Baby girl is FIVE MONTHS OLD!  I can't believe it!  She is doing really, really well!  She is "talking" and laughing and smiling.  My heart is full!  She also discovered she likes blowing bubbles, and she is experimenting with the volume of her voice.  It is so funny!  She is the best baby!  She still loves her swing!  She also discovered recently that she loves playing with my hair when I hold her.  It is sooo sweet and melts my heart!  We pretty much go anywhere and everywhere, and she is really good unless she is hungry or sleepy.  The only thing she really doesn't like is lotion after her bath.  Well, that and therapy on some days.  :)

She is a growing girl!  I posted her four month stats in a previous post, but she is 50-75%tile in weight and 50%tile in length.  Of course, her head circumference is <5%tile, but she has microcephaly, so that wasn't surprising.  We go back in about a month for 6 month immunizations.

Grace is wearing size 3 diapers most of the time.  She is in size 6-9 month clothes.  Her eating schedule is being disrupted because we are introducing solid food!  So, as far as formula goes, she is eating anywhere from 4 to 7 ounces every 4-ish hours during the day.  We were adding rice cereal to her morning and night bottles, but she is now eating one serving of cereal via spoon!  She likes oatmeal better than rice, and I recently added a little apple baby food in with her cereal.  She is a good eater!  She is also a great sleeper!  She goes to bed usually around 10 pm and doesn't wake up until we wake her up 99% of the time.  We usually wake her up around 6:30-7 am.

All of her doctors are really pleased with how well she is doing!  The most recent big news we have gotten was from her opthamology appointment.  Dr. M said she can see!  I thought she could see, but I needed an opthamologist to confirm it!  I knew she had some vision problems, because she can't always focus, and she rarely follows anything.  Dr. M said that she does have vision delays, and she probably either has delayed visual maturation or cortical visual impairment.  There is no treatment.  The delays may or may not correct on their own, but we will just have to wait and see.  Dr. M said he was optimistic.  I guess we are getting good at that (maybe?).  ha!  We know God will continue to carry us through the wait and see, just as He has done for the past 10 months. 

Grace is doing really well with her therapy.  I guess we are finished with speech therapy.  We are continuing physical therapy every 2 weeks.  Grace continues to amaze us with her improvements in her motor skills and in her tone. 

We will have another round of doctor's appointments in September, including 6 month immunizations, follow up with her neurosurgeon, and follow up with her palliative care doctor.

So how can you pray for our sweet girl??  Well, pray that she continues to improve with therapy, that her vision continues to improve, that her shunt remains infection-free, that a replacement PT will be found while hers is on maternity leave, and that our next round of doctor's appointments goes well.  Thank you so much for loving and praying for her!  We are blessed!

Below is her 5 month picture.  Notice the blurry arms and legs??  That's because she was excited and moving them!  She is my heart!  

Baby Korbin

Please pray for baby Korbin's family...they said hello and goodbye to him today.  They got to spend a precious hour with him.  Tonya's blog is http://ourraremiracle.blogspot.com/. 

Newborn Session

First of all, I just wanted to post a prayer request...one of my friends Tonya, momma of baby Korbin diagnosed with an encephalocele, is in labor right now.  Please pray for Korbin and his family.  Tonya's blog is http://ourraremiracle.blogspot.com/.

Also, we recently had a newborn session with Andrea Reed (http://andreareedphotography.blogspot.com/).  She is an amazing photographer!  She selflessly gives of her time and talent to serve as the area coordinator for Now I Lay Me Down To Sleep, an organization that is very dear to my heart.  Andrea came to our house when I was pregnant with Grace to capture maternity photos of our family.  She was also present on Grace's birthday to capture our first moments as a family of three.  And, of course, most recently she took photos of our precious 10 week old miracle baby.  I CANNOT say enough about Andrea!  If you are looking for a photographer, look no further! 

Here is the link to our newborn session...a sneak peek!  :)  http://andreareedphotography.blogspot.com/2011/05/golden-family-sneak-peek-of-precious.html

Mother's Day

I LOVED celebrating my first mother's day with my sweet miracle baby today!  It was one of the most special days, and I will never forget it!  It was especially special because, before we had Grace, I thought today would probably be a very hard day for me, a day I would not be able to celebrate.  But through God's mercy and grace, I got to truly celebrate.  Being a momma is the best thing in the whole world!  I love it and I LOVE my precious angel. 

My heart has also been heavy today because of those who have not been able to celebrate today.  Those who have lost their mommas, those who long to be mommas, those who have lost their precious babies.  I'm so sorry because I know today was a hard day.  Please know that I have remembered you today and will be praying for you, sweet friends. 

Happy Mother's Day!

Restoration Hope, Easter, & Update

I had several things I wanted to blog about, so I decided to write about them in the same post.  :)

First of all, one of my dear friend's brother Jason and his family (wife Brandy and three children) will soon be leaving to minister to the poor and fatherless in South Africa.  They founded a non profit organization, called Restoration Hope.  Jason and Brandy write about their calling and work on their website, http://restorationhope.org/.  One thing that stood out to me was what Brandy wrote in a post about starting Restoration Hope.  They had visited South Africa, and while there, God spoke to them.  She wrote: "Our hearts were full, not of pity, but of a deep sense of responsibility to be better stewards of the life God had entrusted us.  God led us to a place where we could no longer sit in the comfort of our normal life while the cries of this people echoed in the darkness."  Anyway, their writing and vision for this organization and their love for the people of South Africa has touched my heart.  Please support them through prayer, and possibly financially as they serve Him and others in South Africa. 


On to Easter...Grace went to church for the first time Easter Sunday!  We were so excited!  She was so beautiful I almost cried when I dressed her!  We also went to PawPaw and Nanny's house after for lunch.  It was so good to have the family all together again after so long of being apart.  One of my favorite Easter songs this year was by Casting Crowns...I love this part: Living He loved me, dying He saved me, buried He carried my sins far away, rising He justified freely forever, and one day He's coming, oh glorious day!!!  Here are some pictures from our Easter.

 Beautiful, smiling baby girl!

 The Golden family

Family of three

Grace updates...

We had an appointment with Dr. P, Grace's neurosurgeon, Monday, and after her CT, he said Grace has hydrocephalus and needs a shunt.  She will have shunt surgery May 18.  Even though this means another surgery, we are thankful that it happened in a non-emergent way, and that I'll still be home on maternity leave.  If she was going to have hydrocephalus, this is the best way it could happen.  

Also, First Steps came to evaluate her on Tuesday.  They were really nice!  A PT and a ST, along with our case manager, came to evaluate her.  They determined that she needs PT once a week, OT once a month, and another ST evaluation.  They were mostly concerned with her motor development (she scored 0-1 month in her motor development).  She had the highest score in her social development (2-4 months)!  They also are referring her to have her vision tested.  Basically, their concerns are: Grace favors turning her head to the left side (they want her to be able to turn it 180 degrees), she cannot track an object well especially to the right side (they want her to be able to track objects 180 degrees), she has her hands in a closed fists position most of the time (they want her to have them open more), she can't really hold objects (they want her to actively hold objects and look/attend to the objects), she has head lag (they want her be able to be pulled to a sitting position without head lag), she doesn't have great head control (they want her to have better head control and to look at us during tummy time), she rarely puts her hands to her mouth (they want her to have more hand to mouth motions), and her leg muscles are tight (they want us to stretch her legs out daily).  It may take up to 30 days for her to receive these services, so they taught me how to work with her until she starts PT/OT.  I was honestly surprised that they had so many concerns, but I am thankful for the First Steps program!  Our goal is early intervention, and over time, hopefully Grace can overcome these things...she's certainly overcome so much already!