Thursday, July 16, 2015

We are not consumed

This I recall to my mind, therefore have I hope.  It is of the Lord's mercies that we are not consumed, because his compassions fail not.   - Lamentations 3:21-22


I write from a different place today than i did a few weeks ago.  

Shea's pain is much better, and our little courageous fighter can now try new things, accept new challenges and push himself because he isn't drowning in pain.  This makes mom very happy.

Although he is still unable to bear weight through his legs in standing or kneeling, he is making progress in many other ways.  ( as those of you know who have been subjected to my facebook videos!)

Probably amongst his biggest accomplishments lately, is that he is tolerating his every day wheelchair much better, and at times propelling it himself!  He can roll from left to right without help.   He can also get up into hands and knees on his own now... andhe has a new "scoot" that he has taught himself which can get him 10 feet or so at a time.  

Shea is also getting out of his wheelchair to the floor on his own, pulling himself up into sitting position, and in general spending much more time out of bed!

Since my little man is more comfortable, and making progress that i can see each week, mommy is coping better.  I have less fear and more hope.  I can focus more on the progress and focus less on the "what ifs".  For this I am very thankful.  Recovery is as much mental as it is physical for the "patient" and the "caregiver".

We do have a very irritated screw from shea's spine which is causing a pressure "hot spot" and we are having to be very careful that it doesn't open up and form a wound.  He's been swimming to exercise his legs and trunk as well.  Also, drum roll please, he's figured out how to drive his jeep again!

Shea also begrudgingly can put on his own braces and socks... although he's not so motivated by that!

We await his wheeled stander.  I appears it will be at least another month and a half before we get through all the insurance red tape... so we try to be patient.  He continues to use a borrowed one each day, but it's too small for him and causes some pressure areas in regions that it shouldn't, so we must limit his time it it to prevent sores.  I am very glad we have it though, it is really the only way to truly get him upright.

His next appointment is tuesday, and we will talk about return to school plans.  For now we have a tutor coming each day to help him catch up on what he missed during the school year.  

I am happy to report that "we are not consumed".  The first few weeks home were at times awful and terrible.  Now we are learning new ways of life and making them ours... for now.   We have our eyes set on the prize, and will keep pushing and perservering until then.  Life is not at all easy, or calm... but we are no longer being caught up the the fury of turbulant fear and pain and trauma...There is hope, and encouragement, and because of that, we are blessed.

video



Friday, July 3, 2015

The question I don't know how to answer

the cord compression just before the
emergency decompression surgery.

The answer is - different depending on what moment of the day you're asking.

The question is - how is shea's recovery going?

As Shea works through the aftermath of his spinal cord compression, these are some updates on his day to day life.

I will start with all the blessings, and positives.  Let us take nothing for granted, and hope that each small bit of progress is one step closer to getting his full pre cord compression function to return.

-We are happy to report that shea's awful vertigo is still completely gone.
-He is dealing with his loss of function better than could be expected emotionally.
-In regards to endurance and strength, he is working hard to tolerate sitting up, or being in his stander for about 3 hours all total during a typical day.
-He's managing 20 to 30 minutes at a time in a seated position at times.
- now able to tolerate some time on his stomach and also propped on pillows in a hands and knees position
- a few times a day he manages to complete a roll in bed without our help
- now off narcotics and using regular scheduled doses of tylenol through the day and night.
- to date we have some kind of muscle activity in the hip flexors, adductors, quads and hamstrings.
- today for the first time shea supported himself in quadriped ( hands and knees) for 20 wobbly seconds!
-Shea's stander hasn't arrived yet... we have a borrowed one that is a bit too small for him, but he is using it every day, and he is no longer anxious and nervous about using it.
-Shea and the family have appreciated the cards, meals, gifts and visits... thank you so much to each and everyone of you...it's an important part of his recovery.

The title of this entry reflects how our family and home is functioning.  Each and every day we have moments of victory and hope and excitement.  Each and every day we have tears, and frustration, and anger.

Shea and I are working through the hard tasks of learning how to do everything differently, learning how to cope, learning when to ask for help, learning when to say - I'm so sorry, but you have to try to do this on your own.

The once simple and quick task of putting on his own pants, today turned into sobbing tears, venting and anger when i told him he needed to practice this without my help today.  My heart broke into a million pieces when i heard " why did you make me have this surgery, I hate this, I should have never let you do this to me"  Wow... a kick in the gut to a mother who already feels guilt and responsibility...     This is not the whole day, he had many moments of smiles, and outdoor time, and laughter... but the realness of his struggles are here for a good long visit, and are not leaving town quickly.

I've been told by various doctors that we will know the final outcome, "when we know".  When we get to 1 year post op, it will be a good picture of what his actual recovery toward baseline will be.

I'm not really sure that Shea can process this yet.  As a mom, and a mom who works in healthcare... I am processing it all, far too often, and can't seem to get the anxiety of the situation to ever take a back seat in my mind.

I hope and pray that he will beat the odds and not only recover to his full baseline abilities...but that it will happen in a much shorter time frame.

We are not typically a family to mourn disability or struggle... but that may be because we opened our hearts to it in a planned way, knowing ahead of time much of what we were getting into.  This was an ambush, a surprise that we never expected.  It was taking a very functional little body and now having a son who wants so badly to get from one spot in the yard to another, and simply can not.  I watched shea lay on his belly in the grass today and pull with all his might with his little arms to "move" and explore... after 5 mintues of effort and discomfort he had shifted about 3 feet. I also see my son, who weeks ago was qualifying for national competition...now not be able to keep his balance in sitting without support.  I am very very proud of his progress so far, and i am also filled with sorrow and anger.  It's hard to have such opposite emotions in you all at the same time.

I try to let Shea see the brave mom face, and keep the struggle out of sight for him.  I wish we all knew what and when his final outcome would be...we have hope and we have fear also.

So, in general, when someone asks... "how's he doing, how's everything going?"  I struggle to answer. I want to keep positive and hopeful... but i also want to be real.

So ... for now we will say, every day is new, and it will be exciting to see what can happen today.

Prayer requests:
For Danielle - our dear girl is having a great deal of emotional turmoil.  She can't process what is happening when shea is in pain, struggling, doing new things.  Her melt downs are regular and intense...and it's hard on her and the family.  Our sweet girl turns 13 on tuesday... I pray for peace and an even keel for her this year.

For Simon - Simon is the quiet behind the scenes man.  He can occupy himself and sneak off to his solitary place too easily... as we have so much time and physical interaction focused on shea right now to get through day to day tasks... pray that we can manage to keep simon engaged and involved in fun and meaningful ways and that he doesn't get lost in the shuffle.

For Emily- Well...she's 3 and we all know it!  She knows right now that the world is not revolving around her, and can act up and challenge us at times.  She is a precious girl who has a strong personality.  We love her to bits, but pray that as tensions sometimes run high that we guide her and teach her in positive uplifting ways with patience and a gentle tone.

For Shea - a hope filled heart, a drive to do the things that are hard, and for his pain to subside so that he can focus on what he needs to in these next months.  Also for that right leg to start catching up to the left leg.

For Mom- That i prioritize properly for Shea... do i focus on trips to the pool, the nutricianalist, stretching, catching up on school work, pain control, weight bearing??? all needed parts of recovery,but there are only so many hours in the day.  I'm also back to work now... i need wisdom to make good choices for him, while also letting him be a kid, and have time for rest too.  I would ask for prayers for peace, for faith in a good outcome, and that i could beat anxiety and fear.  I also would love prayers for the physical stamina of my body, which is doing much more lifting, shifting, bending than i'm used to...i go to bed feeling like i've just left the gym.  Please also pray for my mom's health too....

For Dad- rest, refreshment, and endurance.  Encouragement, and good nights of sleep... and that he knows how much he is loved during this challenging time.

If you've made it this far... thank you so much for reading and caring... this entry may be a bit too honest, but it's real...and it's our heart.

thank you so much for your prayers and support for shea and the family...