She was super impressed as you can see. She would rather throw them than wear them!
Showing posts with label adaptive equipment. Show all posts
Showing posts with label adaptive equipment. Show all posts
Thursday, November 24, 2016
Sonnet gets SMOs
Sonnet got her first pair of SMOs (Supra-Malleolar Orthosis) yesterday. They help to give her
support while standing.
She was super impressed as you can see. She would rather throw them than wear them!
She was super impressed as you can see. She would rather throw them than wear them!
Sunday, November 13, 2016
Sonnet is home! Thank you for your help!
Sonnet is HOME! We left the hospital shortly before noon on Saturday. Sonnet was soooooo happy and excited to get in her stroller! She laughed, and giggled, and waved, and said, "Bye bye!" to everyone she saw all the way out of the hospital! And she was so excited she had the first (very short and mild) seizure we'd seen for nearly forty-eight hours as I went to put her in the van. We haven't seen any seizure activity since.
A glimpse of our way out....
With the cessation of the seizures I was able to feed, feed, feed her, and she regained all of the weight she had lost. The change in my girl is astounding! For the first time since she has been with us she is actually WELL fed and well hydrated and seizure free. She was already vibrant and bubbly, but wow! She is moving FAST now and into everything. I believe our life is about to get much more interesting.
As I reflect back over the past week as a family truly in crisis, and see where entire days just seemed to vanish as the doctors attempted to bring Sonnet back from (and I quote one of the neurologists) her "scary place," I am tremendously grateful to family members, friends, and the medical staff who worked HARD and tirelessly to bring our girl back to us.
I am keenly aware that our decision to adopt medically needy children from hard places affects everyone in our circle of influence. Our adult kids and grandkids have sacrificed some of their share of time and attention from us (mostly without complaint) and neither they or our friends signed up to support a family in crisis. I didn't EXPECT the help, but I am so, so thankful for it.
Many kindhearted people contacted me to ask, "Can I do anything for you?" and I appreciated that so much. But the funny thing is, when someone is truly in a crisis you can't even THINK of what you need. "Ideas of how to help someone in crisis" may be a future blog post, who knows? But I want to thank you for jumping in and helping as your instincts told you. People helped in so many creative ways. Put together they were just what we needed to help us get through this.
I was a HOT MESS and am speaking truth when I tell you I simply wasn't able to worry about my kids at home. My hours were consumed with getting Little Miss the help she needed, assisting or comforting during test after test after test, researching possible solutions on my own, and mundane things like figuring out what to eat to stay alive. Nope, not being dramatic.
Two of my adult daughters and a neighbor jumped in. I didn't need to be concerned about the five kids at home. They were receiving loving care, and while not happy that I was gone, they aren't the bundle of nerves I expected I might come home to. (Abigail and Jen in particular have anxiety issues.) Tikvah was even able to get in on a roller skating party that I am sure did her a world of good. She loves her younger siblings and expresses that often. But it is HARD to live with siblings who are needy. I'm so thankful she got to do something FUN.
Friends jumped in to help those caring for the kids at home. Meals were delivered every night and are continuing through these first couple of days at home. The primary care giver while I was away traveled a couple hundred of miles with her own three small children (she is expecting too!) and I know it was such a relief to her to not have to worry about what to feed the mob at night. A huge thank you to those who took it upon yourselves to set up the meal train and bring meals. It was so appreciated!
A few days into our stay Sonnet was in desperate need of a good bath. She had gone through two sessions of having leads glued into her hair and was just a stinky baby! I was shocked to find that the children's hospital had nothing to offer for bathing someone with her needs. Our request for a bath chair resulted in a regular plastic chair with no supports or restraints. Um.... guys she can't really sit up usually anyway, and is having seizures frequently!
I put out a call on Facebook for anyone local who could go to our house to pick up our Rifton Blue Wave chair so I could bathe her safely. Just moments later as I was making arrangements with a friend for the pick up, my daughter in charge at home sent me a text that the chair had ALREADY been picked up by someone else. That fast. Two different people were ready to drop everything and make an hour round trip to drop this off for her! We used the chair a couple of times over the next days and it made our stay so much more pleasant. What a huge blessing to have it brought to us, and so quickly.
While we weren't allowed to have people up to our floor at the hospital, friends found creative ways to help. One out-of-state friend ordered a soft little doggy toy and balloons for Sonnet, and snacks for me from the gift shop and had them sent up. Once Sonnet was feeling better she spent HOURS playing with those balloons, and is still snuggling with the stuffed dog at home -perfect!
Other friends sent up snacks, (who knew just figuring out what to eat was so hard?) and things like lip balm and lotions to make my creature comforts better. There was even ginger ball candy that was perfect for soothing my upset, nervous Mama tummy. A couple of times when I was finding myself especially longing for a cup of good, strong coffee one would POOF appear via the concierge, having been dropped off by angels in the form of especially thoughtful friends.
Others sent notes of encouragement, posted their concern on my Facebook page, or sent text messages. It was so helpful to know that others genuinely care for Sonnet and we aren't in this alone.
And then there is the whole village of people who were praying for Sonnet. From Facebook friends to other adoptive parents in the China groups, to in-real-life friends and their churches, to our pastors and the list goes on. This was perhaps the biggest blessing to know people were praying. I sincerely believe we witnessed a miracle this week. We had a desperately sick little girl on Wednesday, and on Thursday she was on her way back to us.
Health wise, I believe she is at the best place she has ever been, but she is a sensory MESS. She had so many glues, tapes, new soaps, etc. and she is just digging up her skin. Please pray for some relief for her.
People tell me I'm so brave, but I'll be honest. I'm not. I am somewhat of a coward really, and as human as anyone else. I don't enjoy a medical crisis, and DO enjoy my own bed. But the bottom line is that I love Sonnet FIERCELY and just do what has to be done to see that her life is as good as we can make it. Sometimes with a medically needy child that means taking on the medical establishment to help them see that she isn't "typical" and needs them to look outside the usual medicines. The typical ones didn't work for her and she didn't tolerate them either.
As we were going through the discharge process I thanked the doctors for working so hard to help Sonnet, and for putting up with me cause I knew it wasn't easy at times. One of them replied that I was a "great advocate for Sonnet." I told her that was a very polite way of putting it. She assured me that she was serious and not being facetious. And that is what it comes down to as parents, isn't it? We simply do what needs to be done for our kids. Thank you my friends, for helping me to do that this past week.
A glimpse of our way out....
With the cessation of the seizures I was able to feed, feed, feed her, and she regained all of the weight she had lost. The change in my girl is astounding! For the first time since she has been with us she is actually WELL fed and well hydrated and seizure free. She was already vibrant and bubbly, but wow! She is moving FAST now and into everything. I believe our life is about to get much more interesting.
As I reflect back over the past week as a family truly in crisis, and see where entire days just seemed to vanish as the doctors attempted to bring Sonnet back from (and I quote one of the neurologists) her "scary place," I am tremendously grateful to family members, friends, and the medical staff who worked HARD and tirelessly to bring our girl back to us.
I am keenly aware that our decision to adopt medically needy children from hard places affects everyone in our circle of influence. Our adult kids and grandkids have sacrificed some of their share of time and attention from us (mostly without complaint) and neither they or our friends signed up to support a family in crisis. I didn't EXPECT the help, but I am so, so thankful for it.
Many kindhearted people contacted me to ask, "Can I do anything for you?" and I appreciated that so much. But the funny thing is, when someone is truly in a crisis you can't even THINK of what you need. "Ideas of how to help someone in crisis" may be a future blog post, who knows? But I want to thank you for jumping in and helping as your instincts told you. People helped in so many creative ways. Put together they were just what we needed to help us get through this.
I was a HOT MESS and am speaking truth when I tell you I simply wasn't able to worry about my kids at home. My hours were consumed with getting Little Miss the help she needed, assisting or comforting during test after test after test, researching possible solutions on my own, and mundane things like figuring out what to eat to stay alive. Nope, not being dramatic.
Two of my adult daughters and a neighbor jumped in. I didn't need to be concerned about the five kids at home. They were receiving loving care, and while not happy that I was gone, they aren't the bundle of nerves I expected I might come home to. (Abigail and Jen in particular have anxiety issues.) Tikvah was even able to get in on a roller skating party that I am sure did her a world of good. She loves her younger siblings and expresses that often. But it is HARD to live with siblings who are needy. I'm so thankful she got to do something FUN.
Friends jumped in to help those caring for the kids at home. Meals were delivered every night and are continuing through these first couple of days at home. The primary care giver while I was away traveled a couple hundred of miles with her own three small children (she is expecting too!) and I know it was such a relief to her to not have to worry about what to feed the mob at night. A huge thank you to those who took it upon yourselves to set up the meal train and bring meals. It was so appreciated!
I put out a call on Facebook for anyone local who could go to our house to pick up our Rifton Blue Wave chair so I could bathe her safely. Just moments later as I was making arrangements with a friend for the pick up, my daughter in charge at home sent me a text that the chair had ALREADY been picked up by someone else. That fast. Two different people were ready to drop everything and make an hour round trip to drop this off for her! We used the chair a couple of times over the next days and it made our stay so much more pleasant. What a huge blessing to have it brought to us, and so quickly.
While we weren't allowed to have people up to our floor at the hospital, friends found creative ways to help. One out-of-state friend ordered a soft little doggy toy and balloons for Sonnet, and snacks for me from the gift shop and had them sent up. Once Sonnet was feeling better she spent HOURS playing with those balloons, and is still snuggling with the stuffed dog at home -perfect!
Other friends sent up snacks, (who knew just figuring out what to eat was so hard?) and things like lip balm and lotions to make my creature comforts better. There was even ginger ball candy that was perfect for soothing my upset, nervous Mama tummy. A couple of times when I was finding myself especially longing for a cup of good, strong coffee one would POOF appear via the concierge, having been dropped off by angels in the form of especially thoughtful friends.
Others sent notes of encouragement, posted their concern on my Facebook page, or sent text messages. It was so helpful to know that others genuinely care for Sonnet and we aren't in this alone.
And then there is the whole village of people who were praying for Sonnet. From Facebook friends to other adoptive parents in the China groups, to in-real-life friends and their churches, to our pastors and the list goes on. This was perhaps the biggest blessing to know people were praying. I sincerely believe we witnessed a miracle this week. We had a desperately sick little girl on Wednesday, and on Thursday she was on her way back to us.
Health wise, I believe she is at the best place she has ever been, but she is a sensory MESS. She had so many glues, tapes, new soaps, etc. and she is just digging up her skin. Please pray for some relief for her.
People tell me I'm so brave, but I'll be honest. I'm not. I am somewhat of a coward really, and as human as anyone else. I don't enjoy a medical crisis, and DO enjoy my own bed. But the bottom line is that I love Sonnet FIERCELY and just do what has to be done to see that her life is as good as we can make it. Sometimes with a medically needy child that means taking on the medical establishment to help them see that she isn't "typical" and needs them to look outside the usual medicines. The typical ones didn't work for her and she didn't tolerate them either.
As we were going through the discharge process I thanked the doctors for working so hard to help Sonnet, and for putting up with me cause I knew it wasn't easy at times. One of them replied that I was a "great advocate for Sonnet." I told her that was a very polite way of putting it. She assured me that she was serious and not being facetious. And that is what it comes down to as parents, isn't it? We simply do what needs to be done for our kids. Thank you my friends, for helping me to do that this past week.
Wednesday, October 12, 2016
Sonnet has a Secret!
You can't tell just by looking at her...
but Sonnet has a secret!
We've discovered SpecialWundies! I've never done a "commercial" on the blog before, but here it is. And my disclaimer is that I have received NO COMPENSATION from the company in return for it. This is my "I purchased the product and LOVED IT" commercial.
These are onesies for the older child!
I am so crazy about these things!
They were created by parents of a special needs child. In their case their son was fed by a G-Tube and needed a onesie to help prevent him from pulling out his tube, and also to stand up to the heavy use by an older child with therapies and medical procedures. All they could find to fit an older child fell apart after a few uses, was always out of stock when they needed to reorder, or were too expensive. They decided they would have to manufacture what they needed themselves, and I'm so glad they did! It took them two years of field testing, but SpecialWundies are available to us all now.
These are so perfect for Sonnet! Like many children with cerebral palsy, she does an army crawl. Her clothes just don't stand a chance at staying put. Can we say "BRRRRRR, COLD TUMMY" when she reaches the ceramic tile floor?
And like many children with the history of an orphanage background, she has sensory issues. The onesie keeps her fingers out of her diaper! Yessssssss!
SpecialWundies are made from a very soft 100% cotton, and seem to be made to last. We don't ever want to be without one, and sometimes we go through more than one a day. So we've orderedthree times now. We currently have eight of these so there is always a clean one available! They start in a size 2T and go all the way up to a size 16 (that is up to 120 pounds!)
You can find out more about the Wundies and the company's satisfaction guarantee on THEIR WEBSITE. Sonnet says to HURRY!
but Sonnet has a secret!
We've discovered SpecialWundies! I've never done a "commercial" on the blog before, but here it is. And my disclaimer is that I have received NO COMPENSATION from the company in return for it. This is my "I purchased the product and LOVED IT" commercial.
These are onesies for the older child!
I am so crazy about these things!
They were created by parents of a special needs child. In their case their son was fed by a G-Tube and needed a onesie to help prevent him from pulling out his tube, and also to stand up to the heavy use by an older child with therapies and medical procedures. All they could find to fit an older child fell apart after a few uses, was always out of stock when they needed to reorder, or were too expensive. They decided they would have to manufacture what they needed themselves, and I'm so glad they did! It took them two years of field testing, but SpecialWundies are available to us all now.
These are so perfect for Sonnet! Like many children with cerebral palsy, she does an army crawl. Her clothes just don't stand a chance at staying put. Can we say "BRRRRRR, COLD TUMMY" when she reaches the ceramic tile floor?
And like many children with the history of an orphanage background, she has sensory issues. The onesie keeps her fingers out of her diaper! Yessssssss!
SpecialWundies are made from a very soft 100% cotton, and seem to be made to last. We don't ever want to be without one, and sometimes we go through more than one a day. So we've orderedthree times now. We currently have eight of these so there is always a clean one available! They start in a size 2T and go all the way up to a size 16 (that is up to 120 pounds!)
You can find out more about the Wundies and the company's satisfaction guarantee on THEIR WEBSITE. Sonnet says to HURRY!
Monday, August 1, 2016
My husband is a GENIUS!
This old lady is having trouble lifting two wheelchairs and a weighted walker in and out of our big van when I go anywhere with the kids by myself. So Ethan and I went to a medical supply store this weekend to try out ramps. The aluminum one weighs FORTY-SIX pounds, and then I would have to wrestle it through the side aisle in the van. Definitely NOT an improvement.
We've come to the conclusion that we are going to have to have a lift. But a lift doesn't happen in a weekend. We will need to seek funding for one (they are very expensive -- hopefully insurance will help!) and then it will need to be ordered and professionally installed. In the meantime I was desperate to have SOMETHING to help me get the equipment into the van.
Last night Ethan took the boys outside with him to work on a project. Look what he did!
This is for pushing ONLY the chairs up - no kids in them, and is a temporary fix until we can get a ramp, but wow. It surely saved my back today! If anyone else is in a similar situation here is what he did.
He used two, 2" x 6" boards and trimmed the corners to fit in our bumper. Also note the cord. He drilled holes and put a knotted cord through the top part and the bottom part so even I can get the boards properly spaced to hold the wheels.
This man knows me well, so he built outside "guards" so I don't run the wheels off the boards.
They are lightweight, and flat enough to stash UNDER the seats.
I'm so thankful for this, and my kids will be too. It means we will get to go out to fun places more often! If you think of it please be praying that we eventually find what we need in a lift. Thanks!
Sunday, July 17, 2016
Phillipians 4:19
Sonnet has low tone, as in she is very floppy. We knew this. I figured we could get by with some regular baby equipment for awhile since she only weighs 30 pounds, but I was wrong. She is also very tall which means baby equipment just can't do the job.
In China it took both Ethan and myself to safely give her a bath. This isn't very practical at home where we have other responsibilities also. And she LOVES her bath, so I didn't want to have to rush her through it. Imagine my delight when I found a Rifton Blue Wave Bath/Shower chair on our local Craigslist for about 1/3 of its retail price! I snatched it right up! The seat detaches from the shower legs and fits right in the tub so she can splash around safely.
A sweet friend dropped by our house on Saturday morning with a gift. This was a gift from the very heart as it used to belong to her own precious daughter who passed away. We feel so honored that their family chose to bless us with it.
It is a Snug Seat Stingray Adaptive Stroller. Friends, this is a wheelchair in disguise! It has all the safety features and supports of a pediatric wheelchair without the clinical look. You can see in Sonnet's face in the picture above that this seat is SO MUCH BETTER than anything we had been able to find for her!
We are once again blown away by God's attention to the details... for having a plan to meet Sonnet's needs before we were even aware of them, and for His people loving so selflessly on our little miss. Thank you, Ball family. We are so touched by your generosity.
"But my God shall supply all your need according to his riches in glory by Christ Jesus." Phillipians 4:19
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