Finally found a perfect bib for Birkley and can buy on Amazon.com for $12. I have bought several before and were tiny and only made for babies. This would work until she’s 7 or 8 at least.
So after probably 60 – 80 hours of researching and purchasing several options that didn’t work, I think I solved our bed issue for Birkley. I have been looking for a twin size crib solution but one that I could use at home and for traveling to local areas.
Birkley is 5 and was diagnosed with CMV. With that she has hearing loss, hypertonia, hypotonia, motor and developmental delay. Needless to say, we need a bed where she is contained and feels safe if kicks the sides, sits on her knees, stands, and whatever else she does in her bed. I also wanted to find something that we could use as her bed at home and her bed for when we want to travel (at least to drivable places). Birkley does a ton better in familiar spaces which I’m sure is like most special needs children. Living in Colorado, we are usually traveling to nearby mountain towns and every time we stay somewhere else, we usually get no sleep because Birkley has been up all night crying.
This idea is using the Summer Sure & Secure Gate. I bought two because you can connect them for when on the go, put it in a corner and put a couch, chair or something heavy next to it to keep it extra secure(can see an image through the link above). At home, I can just use one and mount the ends to the wall creating a rectangle with the gate and the wall. There is also a door that locks so your child can crawl in and out themselves if need.
My next step is to buy a thin, foldable twin size mattress so again, we can bring everything with us if we need. Plus I don’t want Birkley climbing over the side if the mattress is too thick.
I’ll keep you posted as to how this goes. Hoping to get the bed set up this weekend but will see. Hoping all goes well this time but have a feeling this will work.
Seriously, enrolled my 7 yr old daughter in school today and all is looking good so far. A good teacher to start and the process to get everything paid for, signed, etc., was super easy. Then it comes to Birkley. I receive a phone call today and her charter school is having difficulty getting help from the school district in regards to getting a para for Birkley and won’t pay for her to ride the bus. Honestly, when does the fighting stop? Why is the school district always against us parents, making our life hard? Why can’t they understand that we are doing the best we can as parents and we need support? Don’t they see how precious our kids are? Ugh, all I’m feeling is.. here we go again but hoping and praying that all gets figured out sooner than later.
We want to become your place for finding out about new products invented by moms like you and me or products currently out there that we have never heard of before. Want us to be able to share what we have found because I find it’s the little things that take sooooo long to find and search for. Sometimes we don’t have time to be inventors every day of our life nor do we want to (we want to play too) and it makes our life that much easier if there’s a place that can help us find the answer a little quicker. Maybe you have made something for your child that could help someone else…how fun if we could make that happen.
If looking for some recipe ideas, hope these can help. After years of looking, researching and trying to figure out a healthier way for my daughter to eat, enjoy what she’s eating and receiving a healthy and balanced meal, we finally have some great mixes that work well. Plus affordable too.
Apple Pie Shake
(alter to make strawberry, blueberry shake)
Makes 2 / 8 oz shakes
12 oz. almond or soy milk (can use cow’s milk as well)
¼ scoop of Raw Meal – Vanilla (sometimes I use ½ cup soy/regular vanilla yogurt for variation)
2 graham cracker sheets
1/8 cup cinnamon applesauce (replace with strawberries, blueberries, raspberries)
1/8 – ¼ cup Gerber Mulitgrain Cereal, Rice Cereal or Oatmeal
(will depend on how thick you need your shake)
* Add little over ½ tsp of oil to 8 oz poured – if need more fat.
Don’t add to the mix above, add after your have poured the desired amount in your bottle or cup.
(I use safflower or sunflower because I want a buttery flavor and better than vegetable oil)
• Every feeding for Birkley is 8 oz. so this recipe is for 2 feedings for her.
• We use the Cuisinart Smart Stick because it’s fast and a perfect size for making 2 at a time, easy for travel and only $30 – $35.
• If add oil, want to try to use right away. Don’t want to put back in the frig as the shake will start to separate. For this reason, we usually add oil two times a day to her 8 oz shakes. Plus most likely enough added fat.
• We alter her shakes using soy and almond milk throughout the day since soy has more protein and don’t want to hurt her stomach.
Depending on what your child needs, can add honey for more sugar, less oil if don’t need added fat, whatever you need to do, can alter easily. In our case, Birkley uses Avent bottles with a slit at the top so can drink thicker shakes easily without choking.
Peanut Butter and Banana Shake
Same as above but instead of Rawmeal and applesauce, add about a 1 TB to 1 ½ TB of peanut butter or almond butter and add ½ a banana
In the Denver area, I’ve heard of a few camps being offered but always looking for other options. Know of any? Please comment below if do. I would like to make a running list for everyone so when the time comes, we aren’t all stressing. Another option may be going to your local rec center and asking if your child can attend. I paid someone to go with Birkley to the Golden Rec Center last summer and they really enjoyed having her. Either way, here are a few I know of so far.
1. Rocky Mountain Deaf School – If hard of hearing at any level, you can attend. Finding out dates soon.
2. Sewall Child Development Center – Offer all types of camps for kids with all types of needs. An amazing community of great teachers as well.
So we tried but just couldn’t do it. Our nanny was here for two months so feel we gave it a good shot but just didn’t work for us. For one, I just couldn’t get used to the fact that someone was living downstairs (finished basement). Two, she did great with Birkley and my 2 year old son, but my 7 year old daughter just did not warm up to her. My oldest is a lot more sensitive so needed a warmer person I think. Three, just wasn’t what I imagined.
Just wanted to bring you up to speed. She left right before xmas and I’m just behind. Someday we’ll figure it out. I hope:)
So I finally came across a site with some good ideas on how to make non-slip surfaces for the water. I don’t want to pay $500 or so for a bathing chair for Birkley so I’m buying another First Years Reclining Booster Seat and adding a non-slip surface to the bath tub so it doesn’t slip. She sits in the chair perfectly and it only costs around $30 and even with adding any of these ideas, I won’t be paying more than $50. So much better.
Here’s the link:
The Boat Galley
I’ll keep you posted as to what worked for us. Yeah! Finally I’m getting somewhere.
When I dropped Birkley off at school today, her physical therapist stopped me for a little to go over some things she is working on with Birkley. I knew she’s been improving but so fun to see her therapist so excited about her and her progression. She showed me what to work on at home to get her to use her left hand more, what they are doing at school with this ballet bar type thing, etc. Just being there for ten minutes was so helpful and such a great reminder of why I need to just slow down and focus on Birkley for a little. If that means I need to slow down on my web biz, than that’s what I am going to do. I realize not every mother has that option but for me, I can and feel I owe it to Birkley to help her succeed.
So now here comes the research again. I need to put up bars in my house, buy more magnetic type toys, toys to help her with her hands and to make her think, a spinner type thing to give her another sense of movement, and on top of that I still need to research more foods for her, work on the sleep issue and on and on.
I look forward to catching up on my daughter and her needs but ugh, how we do mothers keep up? All I know is, we have to stop at some point but hate knowing that there is so much more I can do. If we only had the time, right?