August 31, 2013 Update after a Week of Doctor Appointments

Hello dear prayer warriors!!!  We had a busy week with THREE doctor appointments and one meeting with Bearspaw Christian School.  Hope has another doctor appointment next week, and few more in the weeks to follow.  Thought I would give a bit of an update after this first set. . .

  First I thought I'd share that it was a bit humorous and encouraging to Trevor and I as we were driving to the hospital for the THIRD time this week yesterday, and we both looked at each other and smiled. . . this used to be the norm, every week filled with trips to the hospital. . . now we're feeling tired and stretched because we had a week with three trips!  Although we're tired and there is lots more to process for Hope's future, we are again thankful to our gracious God who gives us these little moments of realization and then enormous gratitude for not only how far He has brought Hope, but also for how He sustained and carried us through the unthinkable past 20 months. . . more than we could ever have dealt with on our own!  That's a double praise to not overlook, for sure!!!

So an update. . . let me start with a brief overview of the plan for schooling for Hope at Bearspaw Christian School (BCS) this year.  She will be going into Grade 6 and will be mostly integrated into the classroom.  The hope is to have her attend as many of the subjects that are appropriate and complete the same work as the other students as she is able.  Examples of such subjects would be Bible, Music, Health, Language Arts, and Social Studies.  Some subjects like Math, she will have her own curriculum to start and progress as she is able.  Hope will be attending BCS full time from the start, which is this next Tuesday, Sept 3rd.  You can continue to pray for wisdom and leading as to what technology/resource/rehab needs will further assist Hope in her schooling endeavours.  We are thrilled to have Mrs. Kornelson working with Hope as her full time Educational Assistant, again this year!  We are also hoping to continue to have some OT visits from her former therapist, and speech therapy assessment will occur sometime this next month as well, and will determine where to go in that area.  We are also hoping to have a plan of therapy from REACH for Hope's cortical vision impairment to see if any re-training of the brain can be accomplished to boost the very limited vision that she has. . . basically some colours and light/dark perception only, no shape recognition at all at present.  Please pray for Hope as she makes the transition to a full time integrated classroom school experience, and also for her new classmates, and all the staff working with her.  We feel she is ready and up for the challenge, but to be bathed in prayer would be VERY appreciated!!!  We trust and look forward to seeing the ways that God will continue to work in her life, and in the lives of those around her, as He continues to work out the plan He has sovereignly and lovingly ordained for her life!

Now, onto some updates from the three doctor appointments Hope had this week. . .

Monday, we saw her new physiatrist or rehab doctor.  It was a very encouraging visit and Hope did very well.  She had one time where she got nervous and bonked heads with her daddy, so had some tears, when trying to show the doctor her new sitting skills.  But she really liked the doctor, and her nurse, and we were all thrilled to hear that this doctor will follow Hope not only until she's 18 at the Children's Hospital, but also as an adult at the Foothills Hospital, as adult rehab is her specialty!  The longevity with a doctor will be wonderful for Hope's long term rehab goals and future!  Hope did a great job of answering many of the doctor's questions as she gathered information.  We are not going to pursue outpatient rehab therapy for Hope at this time, per the doctor's recommendation.  Instead we will work on walking with her new walker (I haven't had a chance to post pictures yet, but will!) with daddy and standing in the new standing frame when we get it.  Also, we will start with working on Hope feeding herself, once we are able to purchase some special rehab utensils that will fit Hope's needs for now.   We will see her rehab doctor every 6 months for her rehab goals and progress to continue to be followed and adjusted as needed.

We also had Hope's pump turned down again on Monday, from 100 mcg/day to 50 mcg/day.  We have one more drop that can be made to the minimum rate of 3 mcg/day, which is considered a non-therapeutic dose (so like she's getting nothing!).  We are encouraged to see how Hope's body continues to handle these decreases well!

On Wednesday, we saw Hope's neurosurgeon, or the doctor who did the surgery to place the intratheccal Baclofen pump inside her.  Not too much to report from this appointment as she is doing so well with the pump decreases.  No plan was made for the pump removal, which we were not surprised by.  We expected that they would want to leave the pump at a minimum rate or even switch it over to normal saline for a period of time before they would consider the surgery to remove the pump.  Don't want to jump the gun in the event that she should need it.  However, we truly believe that this is another area that the Lord has miraculously healed in Hope, and we do not expect that to happen.  So we'll be patient!  We just pray that God will receive the glory for the miraculous healing He has done in Hope's body!!!

On Friday, we saw Hope's orthopedic surgeon.  He is a great doctor and is really wonderful with Hope, as were his nurse and resident.  Even still, this appointment carried some hard news for us to hear and adjust to, but by God's grace, He is helping us to do just that. . . adjust to whatever His plan will be for Hope's life and future, rather than hold onto what we think is best!  So, we will be praying overtime for this area as we see what He will do in the next year!  This doctor is following and will be treating the severe scoliosis or curvature in Hope's spine, neck and pelvis.  Hope had another series of x-rays done, and there was no progress but also no worsening.  He also did an assessment of the flexibility in the curvature of her spine and he is happy with where it is at, so surgical intervention is not imminent.  However, as he told us back in January, he believes that it will get worse, and will become more stiff which will not only be painful, but also limiting for Hope's ability to function and move!  Hope is starting to complain of some back and rib pain, especially as her sensation continues to heal and improve.  His prognosis that her scoliosis will only get worse is based on what happens in other children with brain injuries, especially ones as severe as Hope's.  It would simply be a miracle for that to improve or for it to not require surgical intervention.  So, we are praying for that knowing that God is VERY able, and we'd like to invite you to join us in this. . . but we are also willing to submit to God saying "No," and using the surgery as a way to improve this area of Hope's health.  So, we wait and see, hoping and trusting . . .

Hope has been placed on a waiting list for the back surgery that will be required according to her ortho-surgeon.  It is currently about a 10 month waiting list, which he feels is appropriate, and he also said that if he feels we can postpone it a bit longer we will.  But in case, she starts to become stiff sooner, he wants her to be on the list and closer to getting the surgery when needed.  We're thankful for his prudence in this!  So, all the pre-surgery tests, work-ups, consults and such were ordered. . . this will be another area of stress for Hope as she undergoes more tests like an MRI under general anaesthetic, pumonary function tests, and such.  But again, we know this is wise and we will help Hope to do her best in each situation as it arrives. . . how comforting to know that we will have our compassionate God walking through it all with us, as well!  One day, one step at a time . . .

The surgery will be very involved and will require an ICU stay, week long stay in the hospital if all goes well, 2 week recovery at home, before a modified return to school for 3 additional weeks.  Hope will need to be up and moving around after 24 hours of the surgery, so pain management will be crucial.  To help both Hope and us be more prepared, they are planning to set up a visit with a teen that has had the surgery and benefited greatly from it.  He is able to articulate for himself what he felt before and after surgery, which will be very helpful.  The doctor said that often they do this surgery on children who are not able to articulate for themselves, so having a children like this young man, and eventually Hope, is very helpful for them to see the benefit of what this surgery provides for children with brain injuries.

Trevor brought up the possibility of combining the surgeries and removing her Baclofen pump at the same time as the back surgery, if the pump has not been used for a long time.  The ortho-surgeon felt this was possible, but we will need to check with the neuro-surgeon for his thoughts, as well as see where Hope is at closer to the surgery time.

So that's our update for now.  We ran into Hope's former surgeon who placed and removed her G-tube on Friday, as well.  He was delighted to see how well she is doing, and was most amazed to see how much her awareness, cognition, and speech has come since he saw her last November in his clinic to remove the G-tube!  He is a super nice and caring doctor and it was a wonderful opportunity to share the joy of what amazing things God has done in our girlie over the last year!  Next week, Hope will visit her cardiologist for another follow-up on her cardiac/heart function.  So another busy week with school starting and doctor appointment, PLUS Hope's birthday is tomorrow. . . September 1st. . . our girlie turns 11 tomorrow, and her birthday celebrating started yesterday at Calaway Park with family, supper with a fellow-birthday friend, and will continue tomorrow with more family and friends!  She is quite thrilled!!!  Hope also graduated from our Children's Ministry at Harvest Bible Chapel and went to her FIRST youth night this past week, too!  She loved it!  How quickly they grow up. . . cherish every moment you are blessed to have with your children. . . pour God's Word into their hearts every chance you have, laugh with them every chance you can take, and hug them often!  Every time Hope hugs me, I think about how close we came to never having another one of her sweet Hopey bear hugs again. How she loves giving hugs!!!  She told me yesterday at Calaway, as she was sad and grieving not being able to see the 3D show we were in, after praying together for God's comfort and then her asking to sit on my lap to snuggle, "Mom, I'm a snuggler. . . I have been from the very beginning!"  What a joy she is!  Another moment to treasure. . . trying, with Grandma's help, to find a position that didn't hurt her back or ribs on my lap in a row of theatre seats so we could "snuggle" during the movie. . . finally using the position the ortho-surgeon had used to test her spine flexibility earlier that morning, and feeling her sweet little head rest with a big sigh on my arm, "That's better!" as her sister held her feet, I held her body and head, and her Grandma held her hand and whispered what was happening in the movie to her. . . God's sweet provision of comfort!  May we never overlook or miss those moments to cherish!!! 

Thank you, dear ones, for your precious prayers!  You are so very loved!  We anticipate continued great things that God will do in Hope's 12th year of life, and the lives of all of us around her. . . what a GREAT GOD. . . the GOD OF HOPE!!!

Romans 15:13
"May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope."

Psalms 118:23-24
"This is the Lord's doing; it is marvelous in our eyes.  This is the day that the Lord has made; let us rejoice and be glad in it!"