Halloween

This is Grace's Halloween costume!  I'm so excited!  (I ordered it from Zulily.)

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!  

Photos

 First picture

One day after surgery, first bow

 Going home

 Morning after shunt surgery

 Daddy time

 Eating oatmeal and apples

Pretty in purple

Holland

I just love this written by Emily Perl Kingsley, "Welcome to Holland"!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Trying rice cereal

We are on day 2 of TRYING rice cereal (per spoon...she already LOVES it in her bottle)...I say "trying" because I'm not really sure how well it's going!  ha  What I am sure about is that I have a little baby growing into a big girl!  She'll be five months old very soon.  I wish I could just say STOP and pause these moments...it's all happening too fast!  I am LOVING every second of being momma to this precious girl!  I thank God for blessing my life with her!

Grace Talking!

We had Grace's four month pediatrician visit today.  She got three vaccines (two shots), and she did great!  Stats: Weight 15.1 lb (50-75%tile), length 24.something in (50%tile), and head circumference 38 cm (<5%tile).  I am so proud of my growing girl!

I finally got a video of her talking saved, so here it is!

Four Months!

Wow-Grace is four months old now!  Time is flying by as we try and enjoy every second of her life!  She turned four months on July 4th, hence our picture!

What has Grace been up to these days?  Well, she is wearing mostly 6 and 9 month clothes, and size 2 diapers.  We started rice cereal Saturday, so we are adjusting to a new eating schedule.  Generally, she eats anywhere from 4-8 ounces every 4 hours from 6 am to 10 pm.  She sleeps really well at night still!  She is talking so much these days, which we LOVE!  She still enjoys swinging, playing in her bouncer, and playing on her back.  She is making so much progress with speech and physical therapy...we are so proud!  Tummy time is getting better and better.  She is very attentive when we read to her, and she also likes music and her mobile.  Her hair is getting longer and longer, so much so you can't really see her scars much anymore.  She is laughing more and more, and she loves feeling of my face and playing with my hair.  We see our pediatrician for her 4 month check up next week, so I will post her stats after that.  We do have to finish her hearing test, and we are being referred for a vision test.  Please pray that these tests will go well!  Also, please continue to pray for her progress with her therapy, and pray that her shunt will remain infection free.

We are in love with our little girl and are so thankful for the past four months! 

Here are some more pics!  I will post a video of her talking as soon as I get it on my computer.

"Every good and perfect gift is from above..."  James 1:17