November 9, 2013 . . . Hope's Doctor Appt Update

Hello dear praying friends and family!  I was thinking of how best to update you on Hope, and thought I would break it up into the doctor side of things, which I will now share, and then later, the school side of things!  Each of these posts will include both praises to the Lord of her progress, as well as requests for you to lift up before our Heavenly Father, as you continue to pray for our precious Hope, her recovery, her sister (Gabi), her family, and that her story will always display and point to the power, goodness and far outshining glory of our awesome God!!!  : )


So in the attempt to be somewhat organized, I shall just work through the various doctor appointments since the end of August to give you an overall update of both Hope's progress and continued prayer needs.  I cannot promise that this will be short. . . so please bear with me. . . I'll try to lean on the concise side. . . although for those of you who know me or have read a few of my past blog entries, that is not my strong point, is it!!!  : )  But my prayer, as I share this information with you, is that you'll be overwhelmed with the power and goodness of our God, encouraged to praise His glorious name for all the great things He has done and will continue to do, as well as fall more in love and adoration of such a loving Heavenly Father who encourages us to lay our anxieties and requests at His feet knowing that He hears, cares and is always faithful!

1 Peter 5:6-11
"Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.  Be sober-minded; be watchful.  Your adversary the devil prowls around like a roaring lion, seeking someone to devour.  Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.  And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.  To him be the dominion forever and ever.  Amen."

I did already give an update on the three doctor appointments that Hope had the last week of August, but I will do a quick recap and then add new information. . .

Physiatrist (Rehab Doctor) -- Aug 2013
This appointment went wonderfully.  Hope enjoyed meeting this new doctor that will follow Hope not only as a pediatric patient but as an adult as well!  What a blessing!!!  We are not pursuing, per her recommendation, any out patient therapy at this time.  Hope has very limited therapy in school as well. . . just a bit of speech therapy, and occupational therapy for just another month in order to try to get a switch operated computer program operational for Hope!  So the vast majority of therapy that Hope does is at home with mom and dad in the activities of daily living. . . and God has been so gracious to continue to give Hope gains in this area in spite of only having mom and dad to work with!  : )
Praises:  She is continuing to make small progress in her motor skills, particularly her hands.  She is able to hold a pencil independently and stay on a paper.  She is currently working on making the rough movements of her spelling her name, and although she is a long way off for us to read the drawing, it is becoming "recognizable" in the movements of her right hand!  Her newest and FIRST completely independent task that she can complete, without any help or even verbal cues, is to reach over the edge of her recliner chair and turn the lever to put up her feet and recline back!  She is thrilled!!!   
Prayer Requests: Please pray for continued improvement in this area, and diligence for Hope to continue to work hard in practicing and trying, even when unsuccessful to start with or when its frustrating.  Please pray for us as we set out to attempt to start teaching Hope to feed herself again. . . we need to purchase some adaptive equipment for her to use in this endeavour.  Please pray for wisdom and the set up of an adaptive switch operated computer program that will allow Hope to gain a bit more independence and even fun in another thing that she can do!  Please pray that we will be able to soon get back into practicing her walking with her walker. . . we have not been able to do this since moving. . . and are still trying to figure out the best way/place to do this therapy activity.

**We will see this doctor again in February or March 2014.

Neuro-surgeon -- August 2013
This appointment was a joy to share Hope's progress with the doctor who did the surgery to put in Hope's intratheccal Baclofen pump.  This pump treated Hope's potentially fatal severe dystonia and neural storming.  We left the hospital with the pump at 800 mcg/day, with the expectation that she would only get worse and need to be increased with time.
Praise:  God has done a great work of healing in Hope and she is currently at 50 mcg/day today!  
Prayer Request:  Please pray for wisdom for us in determining when her next and FINAL decrease should be done.  It will put her down to 3 mcg/day and is as low as the pump can go without stopping (which is not allowed). And then from there, will be the decision of if/when to remove the pump. Trevor and I are considering doing this last possible decrease at the end of November, but would appreciate your prayers for continued wisdom and leading from the Lord as to His perfect timing, and His continued hand of complete healing over this area.  For wisdom for this surgeon as to if/when Hope's pump may be removed.

**We will see this doctor again next August 2014, but possibly sooner.

Orthopedic Surgeon -- August 2013
This doctor follows Hope's severe back scoliosis that is due to dystonia as a result of her brain injury.  Her scoliosis in her pelvis, spine and rib cage is extremely debilitating for her.  It is a large part of what prevents her from walking due to lack of balance.  It is causing her increasing rib pain as her ribs fold into other areas and rub and cause deep pain.  She will say that her ribs feel like they are broken.  At this August assessment, Hope still showed good flexibility and was able to have her spine straightened without pain.  However, according to the doctors, this will never get better and rather will increasingly become more stiff and thus painful and further debilitating.  As a result, the surgeon has put Hope on a 10 month waiting list for back surgery, where they will place a rod in her spine to attempt to straighten it out as best as able.  We are currently beginning pre-op assessments and tests that will be necessary before this surgery occurs.

Hope is currently scheduled for another MRI, of her spine this time, on November 28th.  This will be a 45 minute procedure and will be done again under general anaesthetic.  We met with the anaesthetist last week and they are asking us to stay over night following the procedure again, just for extra diligence in safety (not because they fear that something will go wrong).  Hope is disappointed about this, but we are very submitted to the diligence of this dear doctor who is being overly cautious because she told us that she remembers Hope from the beginning of this journey and how sad they were with us at the time, and now to see where she is at, they do not want to take any chances of setting her back at all.  We are thankful for such a thorough and caring doctor!

Praise:  That Hope has remained flexible in her spine.
Prayer Requests:  For wisdom for this surgeon as to if/when Hope needs this back surgery.  Hope will tell you that one of her three top prayer requests is for her back surgery. . . she does not want to have it, but she is also desiring (as are we!) to be submitted to the Lord if He should choose this method of treatment in furthering Hope's recovery and possible future ability to walk again.  We know that God can heal without this medical procedure, and so we are asking you to join us in praying for a miracle!  But, we also ask that you would pray for us to trust the Lord in His answer to this request and pray for strength and courage for Hope if He chooses to use the back surgery for His purposes in Hope's life/recovery.  We are also trying a new home treatment of massage with essential oils that has been known to improve cases of scoliosis. . . please pray with us that the Lord might use this as He would see fit in Hope's recovery.  And at the very least, Hope is loving the wonderful aromas of the oils, and the soothing massage!  : )  Finally please pray that Hope will trust the Lord for His grace and strength to help her through another overnight hospital stay.  These stays are very hard on our family, in being separated and reminding us all of very painful past days.  Those emotions can come flooding back and take you by surprise in how suddenly raw and painful it feels.  As hard as it is, we must keep our eyes on the Lord, practicing thankfulness for how far He has brought our girlie, and for His always present faithfulness, as well as continuing to receive our comfort from the God of comfort!  Please pray that we will all stay grounded in truth, rather than feelings, and that God will be glorified in our lives, no matter what the circumstances.

**We will see this doctor again in February 2014.

Cardiologist -- September 2013
Hope had another full cardiology work up.  The reason they have continued to follow Hope was because the cause of her respiratory and then cardiac arrest is still unknown.  As well, there is a family history of sudden unexplained cardiac arrest (two of my sisters, one of which passed away at a young age, and the other who had a pacemaker inserted at age 35 because they could not find a cause).  However, Hope's heart has consistently shown no abnormalities whatsoever.  She received another gold star at this appointment, so the decision was made to wait another 2 years for another follow-up, unless a new circumstance arises!
Praise:  That Hope's heart has remained healthy since the day she was removed from the ECMO heart and lung bypass machine!

Urologist -- September 2013
This was another quick and easy appointment where it was decided that no further follow-up is needed, unless a new problem arises or old problem reoccurs.  This referral was made back in January due to Hope's long battle with severe urinary retention. . . we now believe that this was a severe side effect of her intratheccal Baclofen medication.
Praise:  That God has completely healed Hope of this very troublesome and unpleasant problem!

Neurologist -- October 2013
This was a fun visit with Hope's neurologist who has known her and followed her since February 2012.  Hope had a great chat with Dr. Barlow and told her all about her time at Grade 6 camp with Bearspaw Christian School, including having the doctor guess what she ate for her meals!  It was very precious to see how far God has brought Hopey. .  . from a traumatized suffering little girl who screamed at the doctor's attempt to touch or talk with her. . . to this. . . smiling, chatting, sharing, and even playing with the doctor!  Dr. Barlow was happy to hear that Hope has not had any further seizures since the ones in early August.  Hope's anti-seizure medication was still increased slightly just to account for her weight gain over the past 6 months. . . praise the Lord!  We also asked the doctor about treatments called brain mapping.  She feels that this would not be helpful nor fitting for Hope's situation/condition.
Praise:  God is great and greatly to be praised for the miracle of healing He has done in Hope's life thus far. . . seizure control, increased cognition and memory, healthy appetite, restored speech, and motor movement progress to name a few!  Praise our Awesome God!!!
Prayer Requests:  That Hope will remain seizure free!  For wisdom for this doctor as she continues to follow Hope.

Wheelchair Seating -- October 2013
Hope has grown a lot this year, and her continued recovery has changed the way she holds herself.  As a result, she needed a reassessment for the fit of her wheelchair.  These are long and difficult appointments for Hope with frequent fittings and in/out of the chair.  However, she did wonderful this time and tolerated it all very well!  The saddest part of the entire half-day appointment was when they switched out her big headrest for a smaller one with less contact (placed further back from her head for when she is resting back in the wheelchair reclined, but otherwise allowing her more freedom in movement of her head without rubbing her hair against the headrest surface all the time).  Although it was hard to see her sobbing, sad over not wanting this change, it was a treasure to hold and comfort our precious girlie, much like I would have 2 years ago!  Hope also had the final fitting appointment at this time for her new standing frame.  This huge contraption will allow Hope to stand (without us holding her).  It includes a flat tray and a bucket tray so that she can do activities while standing, such as helping in the kitchen, crafting, or feeding herself!  Now we just need to find somewhere to store it in our house!  Currently it's sitting in our front entrance!  We're excited to have time to start incorporating this into Hope's daily routines as therapy!  Standing (being weight bearing and upright) has many benefits to the health and function of our bodies, so this is important for a little girl who spends all her time sitting or laying down!
Praises:  Hope required several significant wheelchair modifications and readjustments in order to address all the progress in Hope's recovery!  They also were able to find the source of some of Hope's rib pain, which significantly reduced her pain until just recently again.  Hope's file was also closed/discharged from being followed/treated by the ACETS team. . . they were trying to set up a communication device and since Hope is talking just fine, this is no longer necessary!  Case closed!!!  : )
Prayer Requests:  For Trev and I to find the time, creativity, and space needed to be doing "therapy" focused activities with Hope at home.  Right now we've been much more focused on cognition/academics in school homework.  So, we're needing to work out how to fit it all in, and still manage life!  In the activities that we are able to do at home with Hope, for God to cause much fruit/progress in her recovery!

Dentist -- October 2013
Hope had another regular check up and cleaning, including some current x-rays.  For the first time, we tried out taking Hope back to her past dentist, and her self-proclaimed favourite doctor because he gives the best treats!. . . dear Dr. Morella!  Hope was so thrilled to visit him again and did very well at her appointment with sitting in a regular dentist chair without any extra supports, in talking with the doctor/staff, and in complying/participating in the procedures done!  Braces will be in Hope's future, and she is actually excited about that!  We are so thankful that we can even consider braces for her due to how much she has recovered and is able to do/tolerate now, as well as her ability to understand.  It will still be a big commitment to do them, but necessary as her palate is quite high and jaw quite narrow, so she currently has two rows of teeth at the front!  This is hard on both her chewing/eating and her speaking with proper pronunciation due to misplacement of the tongue! 
Praises:  Seeing the difference in how she is able to manage and even participate in these appointments is a huge praise!  Getting back to another pre-brain injury activity/place feels great for Hope and our family. . . we love being back to going together to our dentist appointments!!!
Prayer Requests:  For wisdom for the dentist in when pursuing braces will be the right time and such.  For Hope to continue to be positive towards having them, and for us to be ready for the commitment to caring for them.

That's it for the completed appointments.  Hope is scheduled to make her first visit since her brain injury to the optometrist in November, then her next visit to the pediatrician in early December, and then back to the endocrinologist in early January.

Thank you so much, as always, dear ones for your continued prayers for our precious girlie!  God is at work in her body for sure and it has been a true delight to stop and consider how far He has brought her over the last 10 months of this year. . . two months to go, and we anticipating more for 2014!  What a great God we have!!!  Already we know how different this Christmas is going to be from last year, and our family is working hard to get our new home settled in so we can enjoy this Christmas holiday season to the fullest in all the wonder and awe of how GREAT, POWERFUL, COMPASSIONATE, MERCIFUL, GRACIOUS, LOVING, GOOD, and all around FAITHFUL God is!!!  I can't wait to have some more time to now work on the update of how God is also at work in Hope's mind and heart!  YOU are so very loved, dear ones!!!