A bed all of her own

One of the hardest times of the day for a parent of a child with special needs is at night. Keeping your child safe in such a way that everyone gets a restful night sleep is a challenge.
There are many special needs beds available, and yes you can often get insurance to pay for these items.
However, David and I wanted something different for Becca. Something really special. Something that did not scream “I’m a piece of medical equipment.”
We brainstormed. We looked around a beds and realized we could adapt our own. We thought about a basic 4 poster bed. At the time that style wasn’t very popular, and it seemed for most of them the post was rounded. That would make attaching any kind of railing more difficult.
We turned our attention to bunk beds. We found one that would be perfect. the headboard and foot board were fairly solid. The best thing behind the idea of a bunk bed was if the day came when Becca no longer needed her special bed we could revert it to a regular bunk bed, or even better in the style we chose, just a twin bed.

So David got to work designing railings. We decided to go with a piece on the back that is fixed. The front of the bed has doors that open. The design is like barn doors.

*edit* If you click on some of these pictures you can better see the note I put on them explaining some things in detail *edit*

Full shot of her bed

Full shot of her bed

We put multiple latches on the bed,in an attempt to make it escape proof. In our case, Rebecca does not have very good fine motor control, and it is unlikely she intentionally unfastens the latch. However we put more than one on there to reduce the odds she would accidentally open them all.

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Latches

Latches

David took boards that would fit around the horizontal slat that is the main support for each bed. Lucky for us the frame of the bed had bolt holes already for you to attach the railings that came with the bed. We used these to attach the frame for her railings.
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I took a picture of the hinges so you could see that the bed has the 2×4 that attaches to the bed, a smaller frame built to hold the doors of the bed, and then two panels that are the doors.
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We do not have a bed in the top bunk. Becca likes to stand up on bed and this allows her to stand and play in bed. However, there is no reason why you can not. Nothing is done to the bed to affect its use as a bunk bed.

This shows the back of the bed. Still railings, but it is a solid piece.
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This picture is from when Becca first slept in her bed. At the time I had the padding I mentioned. I have since taken that down (it proved to be more trouble than it was worth the first time she got sick).

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I’ve shared many of these pictures in special needs groups many times. I often get asked for more information. Therefore I thought it was only reasonable to create a blog detailing the information so that it would be in a format that is easy to share.

To this day Becca loves her bed. It is so nice knowing she has a safe place. I am sure many of you are familiar with that point you reach some days where your child just needs a place to go to decompress. A place all their own. For a child like Becca I can’t just send her to her room. I can’t leave her unattended. Now, when she reaches that melting point I can put her in her bed, turn on her music and quietly leave the room. 9 times out of 10, she plays in there for a short time and then falls fast asleep, just what she needed to do but was to stubborn to do otherwise.
When she wakes up in the middle of the night, as she often does, she is content to play in her bed. She has many stuffed animals, and we even have the crib toy from when she was a baby. She still loves the Fisher Price Ocean Wonders Aquarium.

You can also see we’ve painted some decorations on her bed, as well as made use of those vinyl wall clings (her room is decorated with them and I took some of the extra and placed in her bed).

I hope this inspires another parent in search of the perfect bed for their precious child.

Tuesday, November 4, 2008 11:46 AM

 

Just had to come in and share what a wonderful accomplishment Rebecca did today. She stood on her own (No support at all) for one whole minute! I was able to get her to stand several times, but her longest time this morning was 1 minute. I couldn’t convince her to take a step unsupported, but standing unsupported is still a major accomplishment. She was doing that some before all of her shunt surgeries (and even taking a couple steps).

This means we appear to FINALLY be back to where she was before all of this shunt stuff started. And with her new found energy, stamina and determination (of a typical 3 year old), she should start skyrocketing! I’d say our only problem is that she is doing some self-stimulation behavior. She is making grunting/growling noises and waving/smacking her right arm. She does this for hours on end (okay the better part of the day). She drives David and I crazy with her noise sometimes – especially at night when she won’t be quiet and go to bed. She doesn’t sleep like she should. So if you could, please keep Rebecca in your prayers that we could meet her sensory needs so that she could relax and not need to “self-stim” (a common behavior among kids with Special needs – esp those with Sensory issues aka Sensory Processing Disorder). And also pray that she could get the sleep she needs – so that David and I can get the sleep we need!

God bless you all –

 

 

Friday, November 14, 2008 9:04 AM

 

Well Rebecca has missed school this week because of a cold. I took her to the doctor yesterday because of a suspected ear infection. Sure enough, she does have an ear infection. Poor thing is hurting so bad in her right ear.

At least this morning she is finally getting some good sleep, her ear has hurt her so badly she hasn’t slept the past two mornings. Her seizures still seem to be doing okay (as good as okay is for her). Developmentally we continue to see improvement. We see her using her left hand a lot more, reaching for and attempting to manipulate toys. please continue all your prayers – they are working! We see the Neurologist on the 25th, Rebecca also has a MRI that day.

Please pray for the MRI to be clear. We also hope to talk to the Neurologist about getting an EEG for Rebecca, so pray that we will be able to arrange that without too much fuss.

 

Monday, November 24, 2008 1:25 PM

 

well we have moved Rebecca into her Big Girl bed! We bought her a nice bunk bed and David made some really nice railings for it. Now it is like she has a Twin sized crib. This way she has a bed big enough for her, but is still totally safe.

Wanted to let you know that we have a few important appointments this week. Tomorrow she has a MRI. Then Wednesday she has an EEG before we meet the new Neurologist (yes our appointment with the Neuro was changed).

Please keep us in your thoughts and prayers for these appointments. Pray that we get the kinds of results we need on the EEG, it is one of the few times we need her to actually have seizures. We need the doctors to see what has been going on.

 

 

Wednesday, November 26, 2008 5:47 PM

 

HAPPY THANKSGIVING

Yesterday was her MRI, all went well. The Gliomas are still gone! YIPPPIE Reason to be very thankful this Thanksgiving. Apparently the ventricles still look good, so this means that the shunt must be doing its job. Today was a long day for Rebecca. Aside from some confusion at Duke about getting from the main hospital over to Duke South (they got rid of the rapid transit system folks! Totally messed with my plan). We managed to make it to the EEG appointment not to late, or at least no one complained.

Rebecca was very patient with the nice nurse, Grace, making all the marks getting ready to hook up the electrodes. She started to loose her patience as all the electrodes were attached, but there were a lot of them to get hooked up, and it was a long time for David and I to keep her hands out of trouble. Then she had about twenty minutes of monitoring, including some photo stimulation (flashing the lights at her). The lights did NOT trigger anything, which we knew, she loves bright flashy lights. She had a small seizure event as she was getting hooked up, but nothing we could see during the monitoring time.

After the EEG we went and had lunch. Some minor trauma as I tried to get her through the turnstiles with the stroller – note to self – don’t try that again!

We went for our Appt with Dr. Mikati, and I am very happy with my decision to seek his opinions. First he took the most thorough history I have EVER had a doctor take. So the end results – what you’ve all waited for:

The EEG only showed activity on the right side of the brain, but of course didn’t really show them all the data they needed There are some neat MRI findings – basically if you look at the left side of the MRI the differences between the gray matter and white matter are very clear, on the Right side, not so much. This means that the right side of her brain is under-developed. This could explain why she has such weakness on the left.

He wants her to have a Video EEG to pinpoint all of her seizure activity.

There are really 3 options

Continue with meds – there are many other ones we can try. But she has

“Failed” so many, there is a slim chance a new one would work.

Immune therapy – this would be either a new round of ACTH, or IVIG

(Immuno-Globulin) Therapy. We could decide on this when she is admitted for the Video EEG

The other option would be surgery. There are several choices for surgery, the most common and the most effective is Function Hemispherectomy (I think that was the right name). Basically they remove a large section of the side of the brain causing the seizures. If needed they also disconnect the two halves (Corpus Callostomy I think). Putting in a VNS is another surgical option.We can also go back to the Low Glycemic Diet. Or if we push hard enough to get the right people on staff, start the Ketogenic Diet. But first Duke has to have the Dietitians who are willing and able to help administer it. Right now they don’t. However, they do now have a doctor who is trained

(Dr. Mikati).

Thanks for all your well wishes for her appointments!

 

Monday, December 22, 2008 10:13 AM

 

Wishing everyone a very Merry Christmas

Rebecca is doing well and very ready for Christmas.

My prayers go out to all of my caringbridge friends, those who have won many victories this year, those who are fighting hard, and especially those who earned their angel wings this year. Thank you for sharing your life. I pray that 2009 holds many good things for you and your family. May the Lord be with you.