Little Miss Ruby’s hydrocephalus has been a big learning curve for all of us. It causes her to be very sleepy a lot of the time. We have to work and work to get her to wake up and stay awake. Some days seem worse than others. We don’t want her to sleep much during the day, as she needs to be awake in order to be stimulated. She’s gotta’ learn and grow.
We try ice cubes, the cool kitchen counter top, doing zorberts on her belly, but most times it is a long, long process to get her to wake up. The kids will take turns trying to wake her. But really, it nothing short of a very difficult task.
I realized a few days ago that I really think she is trying to wake when we are working so hard to get her to wake her up, but she seriously is unable. When one of us is trying to wake her, if we walk away for a minute and come back and try again, she will often smile, almost as if to say, “I’m trying, keep doing it, cause I really, really, really want to wake and play with you, but I just can’t quite get there.”
Well today was no exception. I had tried. The kids took turns. Nothing. She would rouse a bit but nod off again in about a minute. We want her to grow and thrive and she just can’t do that sleeping the day away!
So I semi-propped her in a sitting position on my lap at the kitchen table as we were eating lunch. The boys had made tuna sandwiches. Although she was asleep on my lap, I took the teeny-tiniest nibble of tuna and worked to put it in her front bottom gum. Eyes closed, seemingly asleep, she wiggled it around in her mouth and scrunched up her face as it to say, “Ugh. That is nasty tasting!”
It made us laugh.
But it did cause her to rouse a bit more. I gave her a speck more. She woke up quite a bit more, until she was in much more of a wakeful state. It had worked. I continued to give her teeny bits {chewing is not her thing quite yet}.
All of a sudden her head tipped back with her mouth open a speck revealing that she actually was pooling all those teeny specks of tuna on the roof of her mouth. Clearly, she did not like it and was not gonna’ swallow.
No way.
No how.
I had to swab them out with my finger.
Anyway, after lunch Emma was holding her in an upright position. {She is unable to hold her head up herself yet, not even close. And she doesn’t like to be in an upright position for long.
No doubt it hurts her. }
She started to get sleepy again. But we needed her awake. So this time I remembered that I had some cinnamon rolls left from making them the other morning {one of the family favorites}. I grabbed a piece of roll and took a pinch of a speck and put it in her mouth. Without hardly even tasting it, she turned back toward me, reached with her arm toward me and opened her mouth.
Emma and I started to giggle. Oh.my. Our baby girl clearly was lovin’ her mama’s cinnamon rolls! So I nipped another little speck and gave it to her. For the next several minutes she would turn her head to the side and open her mouth, reach with her entire arm and squawk as if to say,
“Hurry up mama, more of that yummy roll – please!”
Her entire being was engaged!
Now that might not sound like a really big deal to many, but to this mama, daddy and family we were over the moon!
This was really, really, really huge!
Ruby was communicating with us a clear like and she was knowing where to turn, which direction to reach and
that her mouth needed to open to get some more.
We ran to show the boys who were in our bathroom where Graham was giving Daddy a haircut. They were just as excited as we were. It is a monumental moment in our lives.
Our 18 month old baby girl is beginning to communicate with us and I just couldn’t wait to tell, you, our sweet bloggy friends!
Yippee Jesus!
What a smart girl! Not only has she found an extra good reason to stay awake, but it'll put some more meat on her bones! hehe. Praise Jesus! 🙂
I can't help but know that your "thankfulness" will bring about more and more of the miraculous in her life! Jesus blessed what others would think was "small" and it multiplied!
I'm over the moon with you! Hooray Ruby! You have all of our hearts!
What a precious moment for you guys! Praying for many, many more!!:)
Oh, we are doing the "Happy Dance" here for you all and especially baby Ruby…Thank you Jesus for cinnamon rolls…for tasty food that wakes up this precious baby girl and makes her ask for more!
I totally understand how even the tiniest bit of communication is grounds to rejoice. My oldest has developmental Apraxia which is a neurological speech disorder. At three years old she could barely put two words together. So I completely understand your excitement!!
That is so totally awesome. 🙂 What an amazing day for you. God continues to bless her and help her heal. Thank you for sharing your "yippee Jesus" moments with us.
amazing! so excited for you all!
Oh sweet Ruby! I love that! A girl after my own heart….mmmmmmm cinnamon buns! Who can blame her! 🙂
Awesome news! Baby girl has good taste! I agree with her, cinnamon rolls are yummy, tuna fish, not so much!
Yay for you Miss Ruby Grace! I am so proud of you–and thrilled for your family! Keep up the good work baby girl You can do it!
Hugs and Kiss from Texas,
Miss Tina
That is just so sweet! She really is looking so good! What a marked difference from when your husband first saw her in Africa!
O what beautiful news about Ruby. What an inspiration your family is and what a testimony to so many. So glad we met that day in the antique store- your family and blog has brought so much in my life
bee blessed
mary
Whatever the Lorad inspired you to do it is wonderful to know that Ruby is communicating, her poor stressed brain is working together with her body. That is wonderful news. I am praying for the day that the Lord restores her sight. I just know she is going to be all right.
Well Miss Ruby Grace I have to agree with you on both the tune being yuck and cinnamon rolls being oh so yummy.
Praise the LORD!
What a sweet moment and milestone. Thanks for sharing it!
So sweet…cinnamon rolls are awesome! 🙂
That is very interesting! How clever to involve all the senses! Tomorrow you'll probably get her awake just passing one of those cinammon rolls under her nose! Don't start baking in the morning before you want the baby up, right. How cute!
Yay Miss Ruby!!! I'm so thrilled to hear she's making improvements! My mom said when I was a baby, she had the same struggle with me from the day I was born to get me to wake up to eat, as I have severe hydrocephaly, also (though, granted, without Ruby's added complications). I can speak as a 19 year old thriving college student that it does get so much better, even with all the stresses! Keep fighting hard for your beautiful girl, mama!
YAY!!! Linny, SO excited for you!!! When Caleb spoke his FIRST word at four, we too were over the moon, we never thought we would hear his sweet voice! I bet your joy is beyond words!!! MUCH love, your Buffalo friend Kelly
that is awesome! She likes the rolls! She has good taste! I look forward to the day where you post she has spoken to you! What a wonderful moment for you!
heather
Have you been in contact with your state's birth to age 3 early intervention program? They may be able to provide free home based services. Also if you suck on a peppermint while talking to Ruby it may arouse her. Peppermint and cinnamon (as you discovered) are arrousing scents. Way to go Ruby and way to go mom for being to attuned to her communication cues!
Linny:
That is so cool. That little girl knows her family loves her and that her mama is a good cook. She is so precious.
Leveta
I must be getting soft….:o) that actually put a smile on my face….
note to self: go take a testosterone pill…. LO
YAY!!!!!!!!!!!!! PRAISE GOD!!!!!!!!!!!
Rejoicing with you as you celebrate the moments of connection with Ruby!!
Thanks for sharing your journey with us
Hmm, tuna or cinnamon rolls? The girl is smart, and I love those big-girl toofs! Such a sweetie. Please give her a big kiss from a reader in MN!
the beginning of many more milestones 🙂
Ohhhh Ruby Grace. You melt my heart.
Gave me chills. I can feel your joy. Praise our God!
YIPPPPPEEEEE RUBY!! You are one awesome little girl!
love that baby, love that story, love that picture! God is good!
Praise the Lord for this precious girl!
Wonderfully awesome and such a happy smile. Smart girl – cinnamon is one of the best taste sensations!
Love it!!
Hip hip hooray for Ruby!!! Cinnamon rolls are one of my favorite things too! Thank you for sharing this precious baby step with us!!
Lisa K
Wow! Thanks for sharing the news and will pray for continued growth and less sleepiness. Hugs!
Please pray that Kerri's (my sister), dog is found. She's been missing since Dec. 20 and tomorrow may help her out by passing out fliers. Bad thing is Kerri lives 3 hours away from where dog was lost, when she was visiting last month. Pray they will find her tomorrow so they don't have to make another trip! Hugs to all!
Grow, grow, and thrive, beautiful Ruby Grace! Thanks be to our Jesus!
What a wonderful post, Linny! I love reading about Sweet Ruby's progress. Thank you for sharing this special milestone!
Continuing my prayers for y'all.
Monumental is right!!! Sweet baby girl is going to surprise a lot of people! So happy you found something to engage her and thank you for telling us!
Just got back from China yesterday and THIS is a WONDERFUL post to read!!!! That's HUGE!
Wonderful!!!!!!!!!!!!!!!!
i remember when Emmie starting making connections to us. Thought my heart would swell right out of my chest!
BTW, knowing you must have a few gallons have you tries ice cream on Ruby?? Nothing like enhancing the sweet tooth she already has.
That is wonderful! I totally understand how the little things are sometimes really big things! Sounds like you have some healing cinnamon rolls there!
Beautiful! Amazing! Praise You, Sweet Jesus! Her smile is absolutely radiant!!
Her progress is astounding to me! She even looks so much fatter than when I saw her just months ago! Families are for kids! It is never a doubt for me when seeing kiddos like Ruby (or even our two!) Thea has started taking steps, she popped out 4 teeth in the last week and her hair is even adding all this new growth! I doubted I would see things like that with her, because she was relatively well cared for, but I see having a family and a mom IS a huge difference. Hugs! So so so glad Ruby has you and you have her!
That is so incredibly awesome! Way to go Ruby Grace!
That is really wonderful! Good job Ruby!
God bless.
Praising our God for such a precious time! Two of my children are special needs and I know how we rejoice at all their accomplishments – big and small! Go Ruby!
That is wonderful news. We take so much for granted with little ones and how they communicate… and it goes by so quickly. What an interesting journey you will have with Ruby, and such a different one than the older kids.
Yippee Jesus! Thanks for telling us! Cannot wait to hear that Ruby Grace sings Jesus Loves Me! Janet
SO exciting! Way to go Ruby!! Thank you for sharing this special moment with us!