For those who watched the video clip yesterday, you heard that Ruby has had yet another diagnosis: Cerebral Palsy. I hadn’t shared that with you my bloggy friends yet, because we just weren’t quite ready. Truthfully, we just had to kind of get used to it all.
Over the last few months we had been diligently working and working with our littlest treasure to get her to hold her head up. But she just couldn’t. Of course, the hydrocephalus has made her precious curly head large and heavy, but still….
Then the doctors told us that she definitely has cerebral palsy and then it all began to make a little more sense. Her muscles are so weak. Almost no muscle tone at all. And there is a real possibility that she may never be able to hold her own head up.
One of her doctors told us we need to start looking into wheelchairs. And although the Lord had been preparing us for the wheelchair thought, it still was like, “Whoooa.” I knew He was whispering to me that we needed a ranch style home when we were looking for a rental. He even broke it gently by whispering “in case Ruby needs a wheelchair one day”.
Although we are not shocked nor are we disappointed, change is always an adjustment.
{I know many of you know what I mean in each of your own circumstances.}
Somehow though we as humans just tend to think that love will fix it all.
Do you know what I mean?
It causes my heart to ache {literally} that my sweet baby girl has had to endure so much. Knowing the circumstances of her abandonment {which will not be shared publicly ever} and knowing that her health has had so many struggles. ugh. If there were a “fairness barometer” on life, Ruby’s would definitely be bottoming out on the scale of “Unfair”.
One of the struggles I personally have been having is that an orphanage setting had not lent itself to much physical contact, on top of her first year that she had endured before her abandonment. And this little girl loves physical contact.
Wheelchairs don’t lend much to physical contact either now, do they?
So I began to pray. Lord I carry her much of the time, but she is getting bigger. How can I keep carrying her as she grows? Of course a sling is a viable option, but which one? I researched and researched and researched some more. The kids helped me research. All the while praying, “Lord, which sling?” Those things are not cheap either! I sure didn’t want to make a mistake and order one that just wouldn’t work for us.
Then one day I felt like the Lord told me to go to a children’s consignment shop called “Kid to Kid”. He even told me to go to a location that I hadn’t heard of before. Okay. I figured it would be a treasure hunt per se.
And so I found the consignment shop and went in praying intently! There were a couple dozen slings. All kinds. Which one specifically Lord? Which one? Her head is uncomfortable if it gets moved much…so I sure didn’t want to “try them all on for size.”
I’m starting to cry as I type this.
Because as I sifted through them, I spotted this one:
Can you believe it? Ruby Toots. I can’t help but think that the creator of Ruby Toots was directed by Almighty God as they designed the sling line. Seriously? Ruby Toots. Don’t you just love treasure hunts when God is the director of them?
Hi momma,
If you pull the sling down further on your shoulder it will provide more comfort and support. It looks too high and partially on your neck in the picture which can lead to soreness. Also, if you shift Ruby so that her head is on the side where your pouch is over your shoulder you can actually tuck her head inside like it is a hood and it will help support her so you can actually have both hands free. I would also recommend looking for a mei tai with a hood. There are several brands that would probably work well for Ruby. Thebabywearer .com would be a great resource. There are many mommas there with special needs treasures. I am sure you will find reviews and great advice on how to wear Ruby for years to come. Also, you can find gently used slings and wraps at great prices. Sometimes mommas will even offer them up for free to a good cause.
Wishing your family the best, Kris
Wonderful…precious…and such a great witness for all of us…ask and you shall receive. I just read recently that in the Greek translation that passage says more like…ask and ask again….seek and seek again..knock and knock again…
I have no doubt that Ruby Grace will surprise us all with all that God has planned for her life. Look how many people she has touched already. She will amaze us all…I just know it Linny. Stand back and watch!
Just watched the clip from the news and it just made me cry. Such a beautiful story. Thank you for sharing your lives with us. We look forward to bringing some treasures home to us in the very near future:-) My heart both broke and soared as I read about Ruby's latest diagnosis. It broke as I relived our own diagnosis day with my sweet boy, Davin Bruce and know what that feels like. It soared as I think about the wonderful blessing that he has been and how cerebral palsy has been a huge part of his life that God has used for His glory over and over again. I know He has huge plans for beautiful Ruby! And just to encourage you, since I was devastated by the thought of having to use a wheelchair for my child, I continued feeding him on my lap (breakfast) until he was about 14 years old and even though he is 19 now, I can still pick him up, snuggle with him and carry him where I need to. Praying for your family as you make this adjustment.
Do you need an ergo carrier? I have an older extra one I nearly left in Uganda because I knew a friend was giving me her newer/used one. It is cute! And it carries the weight on your hips, not shoulders. She has got to kill your shoulder… let me know. Misty is using it to get her boys and then will give it back after the trip. If you want it, it is yours!
Praying for your sweet Ruby Grace! Isn't it just like Jesus to have someone name a sling after Ruby? You are a amazing Mom linny and I am praying that The Lord will give you supernatural strenght as you carry Ruby Grace! Janet
God is so amazing! Ruby looks so comfy in your sling. And I love the name. : )
I was thinking of you the other day and was wondering if you have ever tried or looked into an Ergo carrier. You can wear it on the front of you, or on your back like a backpack carrier. The reason I was thinking that it might work is because they have something that you can snap onto it that holds a sleeping baby's head up, if that makes sense. Here is a link to what I'm trying to explain. Maybe this would be a good solution for her as she gets bigger? It says it can carry a child up to 45 pounds. I've heard that Ergo carriers are one of the most comfortable carriers made.
http://store.ergobaby.com/Carrier_Accessories/Hood_Replacement
http://shop.bellybumboutique.com/static_pages/downloads/sleeping_hood.pdf
Beautiful, Linny. Simply beautiful to read how God directed you to just the right spot. He surely loves His Ruby!!
Linny~
I wanted to share something with you. My cousin Connor is 18 and he has Cerebral Palsy. He was a drug baby that my aunt and uncle fostered (at 6 months old) soon after taking him into their home they decided to adopt him. He is confined to a wheel chair, but he has been scuba diving, skiing, sky diving, water skiing. He is a talented painter, and sells his paintings to support his various activities. He has a rich life and is now attending college courses in his home town of Reno, NV.
Will continue to pray for Ruby and her healing.
Love,
Tamara Michel
PS My cousin Connor also has a website feel free to visit it when you have a chance, it is called "Mylow" aka My Life On Wheels. He has videos of his many adventures:
http://www.mylownv.com/
Oh, I just love this! God made a special sling just for Ruby! 🙂
I carry my 30-lb 18-month-old around with me in a sling all the time. I help out in my son's class every morning, and Sean happily totes along in his sling!
On a side note, as a hint from a sling-wearing-momma, your sling will be a lot more comfortable for your back if you spread the fabric out over your shoulder down onto your arm just a little. It's best to do this BEFORE putting Ruby in it, because adjusting it is harder once her weight bears down on the fabric. That way the weight doesn't all pull down on your trapezius muscle and neck. 🙂
Blessings,
~Katie from Vancouver
I've come out of lurkdom one other time, I think…but I wanted to step outta the shadows today to say thanks for sharing your lives with us. I am so encouraged and challenged every time I read a post or see your tweets (side note: I'd eat strawberry shortcake for dinner every day if I could!). Thank you for loving the orphan, for loving your family and showing God's love through all that you do. It truly is such a blessing and encouragement…even to those of us lurking in the shadows. Praying for you…
Sweet little Ruby – what a lucky, lucky girl to be blessed with such a good reason for extra, extra doses of snuggling!
Oh, AND thank you for the consignment shop recommendation. I've been meaning to look for a few of those. 😀
Wow! Seriously? That is so cool. I LOVE when He bops us over the head with such a direct sign. <3
Even if you're not ready to take the plunge and order a wheelchair, you may still want to look into getting a handicap parking permit (if you haven't already). As Ruby gets heavier, it might be helpful to get the closer parking spots.
Ok, that story is just amazing! I love how God works! Keeping you all in my prayers…
oh my, that lovely treasure sure has endured more than most people ever deal with. Love the new sling! I love the name, Ruby Toots. She looks very comfortable riding around in the sling.
Heather
Beautiful sweet friend!!!
Linny, I LOVE the sling!!!! so perfect! I completely understand where you're at. Kasidi has an MRI scheduled for end of this month; her doctor suspects CP. We are so thankful for all the stimulation she received in the HTS orphanage and her foster family! I'm praying for your family, as always!
This needs to go into your memorial box! I just love the "little" ways God leads us! Of course, this "little" thing has big meaning.
Bless your sweet momma's heart!
We have some friends that had a little gal with some special needs that were similar to Ruby's. They would snuggle with her on the floor and lounge with her in the recliner after she got too heavy to carry constantly.
May God strengthen your arms!!!!
I am mom to an adopted child with Cerebral Palsy. He is my absolute JOY!!! I blog about him frequently. He has a wheelchair but at 4 years old you will still find me carrying him around a lot.
http://www.thissideofeternityblog.blogspot.com
Hi Linny, Our kids spent their first +-6 months in one of these and then they were in a backpack. I found it helped a lot to put on my shoulder instead of my neck. My neck would get sore as they grew bigger. So, on your picture, the right shoulder would have the sling over it to bear the weight of 'Ruby Toots'!!:) Might help to be able to keep her in there longer! I loved carrying our babies around. They went from sling to backpack. They would watch me cut vegetables, do dishes, vacuum the house and they would go with me to the barn to milk cows. Watching over my shoulder the whole time!! I sure treasure those memories!! Babies are meant to be held and loved!
Blesings!!
That's awesome about Ruby Toots, got tears in my eyes as well… lovely little surprise from Him, especially if He told you to go to the specific shop and location…. how awesome!!! 🙂 🙂
Never know, later down the road, He might heal Ruby like the miraculous healing He did for you.
CP is something I have been doing a whole lot of research on lately. Keep posting about things you learn and products that are good.
Linny,
I have CP myself (I'm in my 20s). As often as people look at me or down on me because I have CP I wouldn't change it for anything. It's all for a reason. I wouldn't be me without it. I have no doubt that you'll continue to be a fantastic mother & support system to Ruby.
I recently wrote about the decision to get a wheelchair from the wheelchair users prospective (to help parents). I know you're not close to making that decision yet but wanted to share it with you. http://standup8.wordpress.com/2012/03/27/wheels-of-their-own/
I cry as I read this, god is so good.
I love the RubyToots! Only God!
That little girl is pure sweetness!
God is so good! She looks very cozy!
Ruby Toots. Made me laugh and cry. Oh how sweet. I've never had a sling but loved the Snuggly when we first got our babies. I still have mine…just in case… 🙂
Have you looked into Ergos? (ergobaby.com) They are among my favorite. Slings that went on over one shoulder were great when my kids were smaller but as they got larger/heavier, it put strain on my back and shoulders. Ergos are great because the weight goes over both shoulders and hips. Also they accommodate a child up to 45 lbs and have a "sleeping hood" which supports the head (meant for children when they are sleeping so their heads don't flop around).
What I personally like better than Ergos is wraps. It is a plain piece of cloth that you wrap around the child and yourself. Last summer, I was still able to put my 5 year old on my back. If you search YouTube, you can find tons of videos of how to do it. Some of the different methods allow you to support the head (which I find useful for naps). There was a HUGE learning curve for figuring out how to do it. Maybe Elizabeth or Elijah would be willing to be practice volunteers? And I think many times you would have extra hands to get Ruby situated on you comfortably (one of the hardest parts of getting wraps wrapped well is if you don't have help)
oh linny. CP. that was one of my sister's diagnoses. she was the JOY of our family. light, laughter and life. there is something about kids that have cp… that makes them so darn lovable. one more reason that i am bummed to have missed meeting her in person! i will continue to pray that she will have all of the technology and medical advances at her little fingertips 🙂
That is such a neat story! Please look into a brand of carrier called the "ERGO". It is the most comfortable carrier I have ever used. I found that slings would make my back sore quickly, due to all the pressure being on one shoulder. The Ergo also has a hood that could support Ruby's head. It also has a good weight limit, like 45lbs or something. About $120 bucks, but could be worth it : ).
I watched your youtube clip; you all make such a lovely family. I would love to consider adopting a special needs child, but my husband is so closed down about the topic. I will pray on it some more. Bless you all!
Beautiful! I love seeing her in your arms in that way and am praying that God will give you many ways to have that contact that she wants and needs as she grows.
Blessings
Leslie
How cool is that?! I have a similar sling (although not a Rubytoots) and I will share with you that if you spread the fabric over your shoulder, it will be comfortable longer. I also love my Mobywrap. I loved seeing you on the news and I am excited to see just how much God is planning to heal Ruby! I think Ruby's fairness scale got a big boost when she got adopted into such an awesome family!
Love Megan
oh my! only God! looks cozy!
Oh Linny! You and Ruby are going to LOVE baby wearing! I'm so happy you found a sling that seems to be working for you both. And as Ruby grows, remember that a different type of sling or wrap may be the answer to a tired mama's back & shoulders as well as sweet Ruby just wanting a different way of being held. I've worn my last 4 babies and it has been soooo bonding!
Really neat that the sling was labeled perfectly for you. When the time comes that you want to try a new style, I found wraps to distribute the baby's weight over more of my back and I could really snug child up securely to me. I enjoyed having several styles (sling & wrap) to choose from depending on when/where I was slinging my baby.
I love this picture of you and Ruby. <3
Please look into Conductive Education. My boy has CP, but with CE he is walking by himself…no wheel chair!
I just wanted to share a book and method I have been reading about to help kids with cerebral palsy. The book, Kids Beyond Limits, just came out last month but the practitioner who wrote it, Anat Baniel, has been working with kids who have SN for 30 years. I just starting doing some of the exercises with my son who is 14 years old and has cerebral palsy and I am seeing some very positive interesting results. Here is the link to the book on Amazon.com.
http://www.amazon.com/Kids-Beyond-Limits-Awakening-Transforming/dp/0399537368/ref=sr_1_1?ie=UTF8&qid=1334235137&sr=8-1
My son came home from China last year and I wish he could have been getting therapy like this from the time he was Ruby's age. I will add a couple youtube video links. You can look up more video links about Anat Baniel on youtube too.
http://www.youtube.com/watch?v=rm3D1-Q4E34
http://www.youtube.com/watch?v=0S1cGOcmAYE
Amy
Love it! Praying that you have strength to carry her for many days yet.
You should also look at the ERGO carrier. You can find a good used one because they are quite pricey. The ERGO has the weight of the child carried on your hips, not on your back, and it's easier on you, the carrier! There is also a "flap" of fabric that can be lifted over the child's head to help hold it. The "flap" is also used to provide some cover should the carrier want to breastfeed. (Yes, I know you aren't breastfeeding Ruby but my point is that the flap is rather large and so it could easily hold her head). You can turn the ERGO to carry the baby in the front, on your side/hip, and even on your back. They are approved for like up to 90 pounds, I believe! I carried my 4.5 year old in one on my back for a whole summer while living in Guatemala. So great!
Wow! God is so awesome! Ruby Toots…in my house, that would so become a nickname!
God is good~All the time! I always have tears when I read your blog Linny.
Keep up the God works!
Lori
God is a God of even slings! He cares about the smallest need. I LOVE this and you look precious "slinging" Ruby. Linny, I just love you and would love to give you a big hug. You are a wonderful woman, lady and friend.
Love!
What a beautiful picture of you and your sweet Ruby. And such a beautiful picture of the God we serve. Love it!! Hugs
Hi! I just felt compelled to let you know about the ergo carrier. We have a couple of slings and the ergo. The ergo will be nice for you when she is able to be upright. You can put the "hood" up and it will keep her head still! 🙂 we love your family and are praying for all of you. ( I used to have the my snugglesaurus blog) anyway, praying for your day today! Leigha
Wow! I just LOVE how God works!! (also love that store!)
Thanks for sharing this part of your journey with Ruby Grace. Keep reminding yourself that nothing about HER has changed since the dx; she is still her same precious self! Also remind yourself that while CP doesn't go away, children do progress with therapy and (sometimes) improve their skills over time.
I'm glad you found a sling that works for her and you! As she gets bigger, you may also want to look into a "soft-structured carrier" that can be worn on your front or back that may let you "wear" her longer. I carry my newly adopted three-year-old from China in a Boba 3G, which is officially for children up to 45 pounds, although I know people who carry larger kids in them. It distributes the weight on both shoulders and your waist (like a hiking backpack, but without the frame) while holding the child close to you, so it is much more "ergonomic" than a sling for a larger child.
Lastly, although a wheelchair is hard to think about, it really does open up a world of going places, seeing things from a new perspective, etc., etc for the child. When you have a free minute :), research the MOVE curriculum and see how dynamic standers and other adaptive equipment make a huge difference even for kids wtih VERY significant motor needs.
When I scrolled down and saw the picture of your sling, I laughed aloud, and then began to cry. Mighty, awesome God! May you have many, many days of carrying your precious Ruby close to your heart.
This blesses me to pieces. God is such a blast!!! Definitely a Memorial Box story…on a Thursday. 🙂
Linn,
Can I gift to you our gently used sling? I am so glad you have one now, but it would be great to have a back up, right? The one I have is a Mei Tai type sling – you can google it. It distributes the weight evenly across your back and is incredibly comfortable. The weight limit is – get this – 90 pounds! It's a beautiful deep purple. I would love to mail it to you. I "wore" my little girl almost 1, for 12 hours straight! If you genuinely don't want or need it, no biggie. I just thought I would offer. It is easily washed and dried in your machine, too. Anyway, you can email me at jackjujam at yahoo.com if you want it!
sweet ruby! you will both love, love, love wearing her on you. i'm going to send you a FB message!
Ruby Toots – cute. My favorite, by far, carrier is the Ergo carrier. They come with a little hood that might hold your Ruby's head. The Ergo can be worn front and back comfortably.
Isn't God amazing??!!! Ruby Toots!
Your sweet baby girl is so blessed to have a mommy that 'gets it' and knows she'll go to the ends of the earth for her…and every one of her other 10 kiddos too!
So blessed! Your kids are so blessed as are we in turn as you open your life to us. Thank you!
We have 2 blessings with CP. Since I can't carry both (almost 70 pounds together), I ordered a special tomato stroller. We love it. It's comfortable, affordable and will last a while. I wasn't ready for wheelchairs either. Adaptive mall website has all kinds of useful stuff.
I got a hip hammock and use it with my 19 month old, I like it because it holds her upright and puts her head up near my chest, if I swing it around a little to the front instead of directly on my side and position her just suit even supports her head! … totally love it, she has fallen asleep in it many a times, (perfectly positioned pillow) *ahem… ha! I found mine at a yardsale. If you stumble across one…
Praying with you for Ruby.
We are in the process of seeing how extensive our newest treasure's (been home 2 months) CP is. He was neglected severely for the first 16 months of his life, HIV out of control, drug exposure in utero, and well…..that is a lot working against him. BUT GOD!!!! God has healed him sooo much in the last 8 months since he has been with foster family and his first healing family- he is crawling, pulling up, still working hard on sitting up, babbling, and soo much more!
GOD CAN!!!!! LOVE THAT SLING!!! We have a hotsling- very similar design and LOVE IT!!!! 🙂
God is so good. Amazing! Love it Linny! There is also a carrier called ergobaby, for when Ruby gets heavier, you dont feel the weight at all and it is super comfy for baby. My daughter is 30 pounds and 2 years old (home 1 month now) and I used it to carry her all over the place while in China and she still loves it.
So unafraid of any diagnosis.
Because her original one?
"Needs love. Lots of love".
And God has provided.
I salute you for this…
Check out Cerebral Palsy Family Network for tons of resources and advice. It's also a great way to get involved in the CP community. Raising a child with cerebral palsy can be tough, but it's also one of the most rewarding things you can do. 🙂 Good luck to you and your beautiful family!