Bath Time

Every night, the bed time ritual begins with a bath. Emerson loves a bubble bath. . .just like her mom. But bath time can be challenging with a child who can't sit up or hold their head up once they outgrow the standard baby bath tubs that offer complete support. Having the right tools is important to make bath time enjoyable. I get asked about how we deal with bathing all of the time, so I thought I'd share the ingredients for our bath time here.

First and foremost, you need a good bath chair that suits your child's specific needs. These aren't cheap and sadly often aren't covered by insurance as they aren't considered a "medical necessity". I think everybody is entitled to a bath! We were fortunate enough to be gifted with a Tumble Forms Starfish Bath Chair and it has been awesome for Emmy. It's very adjustable and has all kinds of bells and whistles for strapping, support, etc. We actually don't use any of the straps because Emmy is quite content just laying on it (with supervision, of course).



One challenge is how high up the chair is in the tub, so we have to fill the tub very full in order for her to actually be soaking in the water and not sitting above the water. Our bathtub isn't very deep, so I found a nifty little gadget called an Overflow Drain Cover that allows us to overfill the tub and ensure she gets to soak in the bubbles.



Another challenge I faced was the prospect of kneeling by the tub with one very bad knee. I also knew this wouldn't be an ideal situation for my back and lifting her in and out of the tub. So I found a folding Tubside Seat that allows me to sit instead of kneel. And it folds and tucks neatly out of the way when not in use, which is key in our tiny bathroom.

Lifting her out of the tub is not easy and needs to be an organized and coordinated endeavor. I found a Bathtub Elbow Rest which allows me to comfortably rest my arms on the edge of the tub for support and leverage to safely lift her out of the tub. Then she sits on my lap to get dried off and ready for transfer into her room for lotion, massage and jammies.



Finally, I spend alot of time pouring water over her to keep her warm and happy. We have a fun game where I ask where she wants the water, and she lifts whichever arm or leg she wants me to pour the warm bubbly water on. I find this Munchkin Shampoo Rinser to be the perfect tool because it holds a good volume of water, has a handle and is nice and flexible so you don't have to worry about bumping their sweet little heads when rinsing shampoo.



Now don't forget the bubbles!!

Firefly Does it Again - The Playpak Rocks!

Exactly one year ago, we discovered an awesome new brand called Firefly. Their mission was all about family participation and helping to get SN kids involved in the family. The first product we tried was the Upsee. . .and it was nothing short of amazing. This brilliant device allows Emmy to stand upright without the cold rigid structure of a typical stander. Finally, something she felt comfortable in! Her eyes were opened to a whole new world. . .one where she could see eye-to-eye with her dogs, one where my hands were free to play and interact with her while she was completely supported, and one where we could walk around the back yard together and literally smell the roses.



Next from Firefly, we discovered the GoTo seat. Seating has always been a challenge for Emmy (as referenced in my last post here. The GoTo has quickly become another tool in our arsenal of finding ways to assist Emmy in sitting upright in a way she tolerates. . .sometimes anyway. What's particularly great about the GoTo is how lightweight, portable and versatile it is. We're sure we will continue to find new ways to use it for years to come and hopefully Emmy will learn to like it more.



But what I really wanted to tell you about is the latest greatest Firefly tool we started using less than a month ago and have already come to love. . .the Playpak.



When I first heard about the Playpak, I was excited and couldn't wait to try it. I had always wanted one of the Leckey Early Activity Systems for Emmy, but insurance didn't consider it a "medical necessity" and the $1250 price tag was a stretch for us to do without help. The Playpak is an offshoot of the EAS that is more accessible for families thanks to a reduced cost ($450). It's also lightweight and portable, making it extremely user friendly.

But if I know anything, it's that I know nothing, and despite how cool something looks or sounds, it means nothing until we try it with the princess of our palace. . .Emmy! And, I can honestly say, from the very first trial, we were impressed.



She was very tolerant of it immediately, which is rare. Emmy likes to be held and doesn't do well in any kind of supportive seat (although she is getting better). I think she did well in the Playpak because it's soft (not rigid), and although very supportive, it also has plenty of give and cushion. Although the possibilities are endless for the ways in which you can use the Playpak, we were most enthusiastic to try the supported sitting position. Emmy loves sitting up, but needs tons of support to do it. She's 34.5 inches tall and about 21 lbs. Her head control is minimal. She has trouble lifting her head, can hold it for a few seconds before it either falls backwards or forwards. If she has something behind her head, she can hold it up for several minutes.



The Playpak put her in a very nice position for working on her head control, giving her nice support around her torso and allowing her arms to be free to activate a toy. . .ALL BY HERSELF. She lasted about 10 or 15 minutes in that first trial, which was great considering it was already early evening and she was getting tired (and grouchy).

I did note that I needed to be close by to chaperone what was going on. If her head did drop back, she would get stuck and need a little help to get back on track.



We tried it again a few days later and it went very well! Emmy sat and held a toy (aka wire whisk with bells with the help of an EazyHold support strap) for quite awhile. This was progress, an option that would help Emmy sit up without someone helping her!



We also tried tummy time, which went well as well. However, I don't think it's anything too revolutionary that you can't already do at home with a nice support pillow.



But what was nice is that it was part of one piece of equipment system that you can take with you!

I was also curious to share the Playpak with Emmy's therapists and get their feedback, so we took it to NAPA Center, which was no problem since the mat folds up and transforms into a bag that holds the various rolls, cushions and straps. First we did a sitting position and our therapist had the brilliant idea of using the little blue cushion (included in the Pak) behind her shoulders and head to offer more support. Why didn't I think of that?!



We also worked on a three point kneeling position. One of the rolls was placed behind her feet so she couldn't push her legs out of kneeling. Again. . .that velcro is strong!



Finally, we let Emmy's OT who comes to the house play around with it and now she requests it every time she works with Emmy! Another cool feature is how you can literally put your hands under the mat and move Emmy all around while she's in it. She loves all of the vestibular input.







Although I liked it immediately, I wanted to really use it several times before I wrote a review. Now that we have, I can honestly say we love the Playpak and so do all three of the therapists we have let use it with Emmy. I've gotten many questions from parents of more severely affected kids who have minimal head and trunk control that were concerned the Playpak wouldn't have enough support for their kids. But after seeing Emmy in it thought it might well be an option. I can assure you that Emmy is nowhere near sitting by herself or even holding her head up, and she benefits greatly from this product. As for kids with higher tone and arching, Emmy has arched and stiffened in this and she can definitely recline it when she gets stiff, but the velcro holds tight and I just have to give some cues and jiggles to help get her back into a relaxed and flexed position. However, if she's downright mad and stiff as a board, I have to take her out and try another time, much like any other piece of equipment. All in all, I find this to be a very beneficial tool, easy to use and we will use it for years to come. Just wish we had had it sooner. Thanks Firefly!!!

Seating Hits and Misses

Seating is tough. In Emmy's three short years, we've already collected quite an arsenal of seating options, none of which she really likes. Her seat of choice continues to be a real live human lap. But with the third birthday quickly approaching and her height and weight continuing to increase, we feel the urgency to find something she will tolerate sitting in even for short periods of time. It's exhausting having a child you can NEVER put down, even for a few minutes. You know how sometimes two hands aren't enough. Well now I often find myself with no hands to do anything else because they are already taken up holding my child 24/7. Don't get me wrong, I love and cherish that I get to hold this little sweet pea so much. But come on, sometimes mamas got other things to do too. . .like laundry and dishes and cooking. . .and making a cup of coffee! Not to mention, she'll be starting school soon and will need to be able to sit on her own there too. Anyway, I thought a roundup of what we have and what we've used may be helpful for others. So here goes:

In the beginning, it was all about the swing.



Emmy needed perpetual movement and the only way we could put her down was if she was swinging. She even slept in the swing for the entire first year of her life. It was a lifesaver.

Our first swing was battery operated, but it quickly became apparent that we'd be eating through A LOT of batteries and it might be cheaper to just invest in a plug-in swing. We were correct. That said, we would end up burning out not one, but two motors because she swung so much. Fortunately, Fisher Price was always very accommodating and stood behind their product. We were reimbursed both times we had to replace swings due to burnt out motors.

We loved the Fisher-Price Cradle N' Swing Starlight the most. In addition to cradling her nicely and swinging, it also had rotating star lights which were great for visual stimulation.



She eventually would go on to start batting at the hanging stars when she was about 1 to 1.5 years old. And we added all kinds of fun toy. . .koosh balls, bells, beads to entertain her as well. When we'd check into the hospital, we'd bring the swing.



When we'd travel, we'd make arrangements in advance to have a swing available. There was never the option of going without a swing. It was our saving grace. But alas, in Feb. 2013 when Emmy turned two and had gotten quite large for the swing (long really), it was retired.



It was at this age that we tried the Fisher-Price Space Saver High Chair

I can't say enough good things about this chair. It's great for young SN children with no head control and low trunk tone. It reclines, has a high back, it is lightweight and small to take anywhere, has good secure straps and it is inexpensive.



It also has a big tray for feeding, toys, iPad, etc.



I wish I could say we got a lot of use out of it, but Emmy really didn't tolerate it much at all. But in theory, it was great and I would highly recommend it for others!



For her first two years, we also attempted the combination of a Huggabebe support with a Bumbo. This was another seating solution she was not fond of. However, we also really liked this because it really positioned and supported her nicely.



It was also a great way to keep her head safely supported, but give her enough room to move and work on head control. Of course, this was never something we could leave her in unattended, but rather, we used it more as a therapeutic option. She, on the other hand, was NOT interested in therapy and would often fall right to sleep if she wasn't screaming to get out.



Sadly, Huggabebes have been discontinued and are hard to find. But they are out there used and I highly recommend them. We passed ours along to another family that seems to be getting great use out of it.

Currently, our most coveted chair is a Fisher-Price Comfy Time Bouncer. Emmy tolerates this chair best of any, as long as you are bouncing her.



Fortunately, we've figured out how to efficiently bounce her with one foot so other tasks can be done simultaneously. The bouncer is currently irreplaceable and the only way to get her to fall asleep for naps and at night. It's also effective since she is still receiving a nighttime feed when she falls asleep and it keeps her adequately inclined to avoid reflux and spit up.



Once her feeding is finished, we can safely transfer her into her bed and usually avoid waking her too much. However, if she wakes during the night, it's back to the bouncer to get her back to sleep, which can sometimes take hours, although on a good night only 30 minutes. The vibration feature on the bouncer is also quite appreciated. Sadly, she is quickly outgrowing the bouncer and we fear for the day it no longer works for her. Her head already hangs over the top, her bottom nearly hits the ground and the incline is nearly flat because she weighs it down so much. Please Fisher-Price, make a bigger bouncer!

About a year ago, as we saw that she was getting big for the bouncer, we began looking for other options. We stumbled upon the Fisher-Price Infant-to-Toddler Rocker and quickly swooped one up. Her first trial went well and we thought we had bought a little more time since it would accommodate her for longer than the bouncer.

We quickly learned this was not the case and the rocking motion (as opposed to bouncing) was not adequate for her. The rocker now resides in our garage. Once the bouncer is done-zo, we'll pull it out and try again.

As she gets bigger, the need for Special Needs equipment becomes increasingly necessary as she outgrows the baby products but continues to need the support they offer. Here's where everything leaps in price and often isn't covered by insurance because it's considered a luxury item and not "medically necessary". Don't get me started on this debate. . .

So that brings us to the soft floor sitters. These are quite common in the SN world and we've actually been fortunate enough to have a Special Tomato Soft Touch Sitter on loan from one of our therapists since Emmy was very small.



These chairs are quite pricey, seldom covered by insurance, but so critical for children who can't sit on their own. Similar to the Special Tomato is the Tumble Forms Feeder Seat which Emmy uses at feeding therapy and school.



They are both very similar in how they work, cost, etc. And with much diligence despite many tears, Emmy is slowly coming around and starting to tolerate this chair for longer lengths of time (as long as you are keeping her entertained).



Some days she can handle 5 minutes, other days she can knock out 45 minutes. We have high hopes for this chair though because it's so versatile. You can put it on the couch, in a wagon, strap it to a dining room chair, etc.



She'll soon be outgrowing the one she has now and need a bigger size, so we'll be saving our pennies for that, or praying some other generous organization decides to lend us a bigger one.



You can also use it with a tray.



The biggest, most technical seat we've gotten thus far is the Squiggles Seating System. This thing is no joke. It comes with two bases, one that essentially makes it a supportive stroller (aka wheelchair) and another which allows it go high or low, so she can pull up to the dining room table or be low enough to interact with someone at floor level. Insurance paid for this chair, fortunately, because with all the bells and whistles it was about $11,000. They will not pay for another "wheelchair" for 5 years, so regardless of how well it works for us, we are stuck with it. Emmy does not like sitting in it. She will handle it for short rides as long as we are moving. The minute we stop, she complains.



But it's a good chair, is very adjustable and customizable to her and will continue to grow with her. Because it's so adjustable, it's a bit confusing and complex to figure out without an engineering degree. But with the help of YouTube, instruction manuals, and other SN moms with the same chair, we are slowly getting familiar enough with it. The biggest downfall of this chair is its weight! I struggle to lift it in and out of the trunk of our SUV. It's cumbersome and I fear for hurting myself nearly every time I move it. . .fearing I will lose a finger as I try to fold it up or permanently injure my back lifting it in and out. It's also quite bulky and takes up the entire cargo space. But I think for now, it's the best of the options out there, so we are thankful we have it.

I had also heard a lot about "corner chairs" and how great they were. I started researching and quickly learned it'd be about a thousand dollars to buy one (and I'm not exaggerating). So I started hunting for an inexpensive used one. I asked on an equipment exchange board and scored. I found one for only $50! However, it was too good to be true, the deal fell through, the woman decided to keep it and I was bummed. So I continued to search and finally found one on eBay for $250. It was still an investment, but considerably cheaper than trying to buy one new, so I did it. I can't say it's been a bad investment, because it's a great chair and we are using it. But again, she doesn't love it. Ok. . .she doesn't even like it.

But it puts her in a great position, pushing her shoulders forward and helping her work on getting her arms midline.

She has room to grow and the chair is adjustable, so we will keep working on this one for awhile. It also has a tray, albeit small, so that's helpful.

That brings us to the final chair in our arsenal which we just received this week. It's the Childrite Therapy Chair. It's similar to a Bumbo, but much larger, heavier and more stable, and with a higher back for support for the head and trunk. It's also about 10 times more expensive than the Bumbo. . .go figure. But I asked around on an equipment exchange group and was able to find one for $100.

We are still in the early phases of getting to know this chair and Emmy is not convinced it is for her. But I really like the position it puts her in, she has room to grow, and I hope she learns to appreciate it to finally give her some sitting independence.



All that said, her favorite chair remains the unequivocal human in all its endless varieties.