Jacob's Room

Originally posted January 8, 2021 -

One of our main priorities when searching for a new home this fall was to find a place that would have enough room for Jacob to thrive -- meaning he needed not only wide hallways and open spaces for his wheelchair, but also a functional bedroom to accommodate his nursing staff and an accessible area for bathing.  We didn't want any part of our home or land to be off-limits to him.  After some upgrades to his offroad jogging stroller he can go anywhere and everywhere...as long as we have a little help bumping over the cattle guards!

Jacob's bedroom is right off the front entrance and it has french doors that allow me to always have eyes on him without disturbing him while he's resting.  One of the ways Jacob experiences the world is through sound, so for Christmas this year we installed high quality surround sound with his television so he can listen to all types of music and enjoy children's movies and musicals.  The boy loves the original Mary Poppins, The Polar Express (great train sounds, close your eyes and listen) and blues music from his Daddy's playlist. 

As Jacob grows, he struggles with more pain in his body and he prefers to be in his bed when he's feeling unwell or uncomfortable.  This is hard for me because as his Mama I want to hold him and comfort him when he hurts, but that only causes him more pain.  His bed has a memory foam mattress and topper, and he has toddler-sized down comforters.  Who even knew they made such a thing??  We use bolsters and pillows to keep him positioned in a way that will not exacerbate the issues with his hips not staying in their sockets.  He has his pulse oximeter, suction, oxygen concentrator and feeding pump nearby.

My type-A, organized, control-freak personality keeps his supply closet well-organized and ready to go.  Jacob requires all kinds of syringes for his different medications, feeds and flushes.  He has feeding bags, formula, suction tubing and canisters, oxygen tubing, portable oxygen, rescue supplies, gloves and masks.  He needs extension tubes, g-button care supplies, mouth swabs, saline, his nebulizer and supplies for breathing treatments, and the list goes on.  His nurses tease me about my level of organization, but it does help us all find what we need quickly and know when we need to restock.  Insurance covers some of his supplies, and there are also many things that we purchase on our own because we get sick of fighting with insurance to get what he needs.  For example, insurance will pay for four pulse oximeter stickers per month.  Not four probes, four of the little stickers that go around his probe and toe.  Each sticker is apparently supposed to last for up to a week...yeah, right.  Luckily you can find anything online these days so we buy quite a few of his medical supplies in bulk ourselves to ensure we have what we need on hand.  

Because of the amount of equipment Jacob is collecting as he grows, we recently started using our spare bedroom as his therapy space.  He has adaptive chairs, a stander, and leg and arm braces to help control his muscle contractures.  I like using the exercise balls to stretch him and work on his range of motion because if I can gently bounce him he stays entertained and will let me do things that are somewhat uncomfortable.  Massage is really helpful for him, and we also use brushes and light vibration to stimulate his arms and help him relax and open his hands.  We have started him with a new home therapy company now that we are settled at our new place, and even though I'm not too pleased with what they are providing now, I am hopeful that it will get better. 

Therapy with Jacob can be difficult, because it requires out-of-the-box thinking and exploring ways to adapt traditional methods due to the extent of his disabilities.  He's also getting bigger and harder to hold and manipulate, and new therapists aren't as comfortable and familiar with him as I am.  I am also pretty insistent about the goals I want for him -- quality of life is everything.  Maintaining flexibility and continuing assisted weight-bearing is very important.  Helping Jacob interact and experience textures, sounds, smells and tastes is a top priority.  Putting Jacob through unnecessary pain to work on an unattainable goal -- not going to happen.

Jacob takes four different seizure medications multiple times a day.  He takes muscle relaxers four times a day.  He takes medication to help him not choke on his own saliva, and medicine to help him relax and sleep at night.  He used to need medicine for his tummy but he is doing great with his feeds right now and not having issues of reflux, nausea or constipation.  Meds start at 6am and go around the clock until Daddy does his last dose between 12 and 1am.  He takes all of his nutrition through his tube and we do that four times a day.  He loves the water and gets a bath every day that we have a nurse helping, and most other days as well. 

If the weather is nice he gets outside in his stroller for walks around our land or down our country road every day.  Duke the dog is pretty sure Jacob is his baby so he tags along wherever Jacob goes.  Duke is also the one who can alert me when Jacob might not be feeling well or is having more seizures than usual.  When that happens, Duke will refuse to leave Jacob's room and sleeps right under his crib.  

Right now my little guy is hollering from his room to let me know he is finished with his nap and ready to go outside.  No nurse today, so he and I are on our own until we pick up the big kids from school.  It's time for a walk!