Giant Special Needs Crib for Home and Local Travel

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.

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Why Are School Districts Against Us?

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.

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Special Living Today Getting a Makeover

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.

 

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Shake Recipe Ideas if Main Source of Food

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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)

Notes:

• 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

 

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Needing More Help, Live in Nanny Takes Time

So we have finally hired our first live in nanny but keep in mind, we don’t have her 24/7. We do a little trade for free living and a little paid to use her for about 20 hours a week. Works better for us. Anyway it’s taken some time for us to get used to the new situation but I have to say that after a few weeks, things are going great. Still not sure how long we’ll do this but has been a huge break for me and definitely gives me time to work more and really just have some time away from the crazy life of having a child with special needs. Don’t get me wrong, great for help with the other kids too but it’s Birkley I needed a break from.

Keep you posted but if any questions, feel free to ask away.

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My Life is in Overdrive

I know it has been forever since I’ve written and feel like I have a hole I need to fill…Long story short, I realized that I needed to change something in our lives and in mine. I need and want more help with Birkley because I want to live better, live more, and just be excited about life and the things we do daily. So in order to do all of this, I knew I needed to work harder and just make the commitment. Wished there was an easier answer but we all know that you can’t make things happen overnight. Plus I was feeling unhappy. I needed to do something other than deal with Birkley, kids, poop, drool, etc. I like to work and every time I would get involved in a project, I would feel so much better about myself, have more patience with my kids and overall felt I was a better mom.

I started really moving forward with my web development business and all is going really well. I just had to focus on one thing for a while to make sure I was moving in the right direction. I love what I do so it was an easy answer for me. I just had to take the plunge. Think too that I had to make sure I was at a comfortable spot with Birkley meaning that I could trust her in the hands of other nannies more often. No more of this hour here, hour there. Plus I need the break.

I’ll be getting back soon as I have so much to share about Birkley. She has been sitting a ton, eating more..altogether just doing better.

 

 

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