Therapy

Last week Wednesday, Jacob played at the Active Explorers play group at the CNIB (the Canadian Blind Institute.)  Jacob took part last year, and seeing how he enjoyed it, I thought it would be good for him to play again.  They have LOTS of different sensory stations set up.  It's also really neat to talk to other parents.
 
This picture makes me laugh every time I look at it.  He was totally disgusted!!  If you look closely at his mouth you can see it all curled up :)  One of the therapists said that this was supposed to be play time for Jacob, not for mom!  At that time, it was sheer play time for Mom!!  For the record, I took the wig off as soon as the picture was taken ;)

 

Jacob also did amazingly in the small ball room.   This was a new sensory experience and he thoroughly enjoyed it.  There was no puckering or disgusted face this time!  He even sat like a big boy!  What a milestone!!

  Jacob has been going through an incredibly fussy period again.  If only we knew what was causing his irritability!!  He's going to start on a new med to see if that helps - only time will tell.  I'm often apprehensive about these changes, but also understand that we have exhausted so many comfort measures with little or no success.  

One day last week I took Jacob on the trampoline to see if he would enjoy the fresh air (we have way tooo many mosquitoes to take him out often.) He LOVED the fresh air, and he loved the gentle bouncing - well, maybe until his brother found out where we were :)  

Caleb wanted to hold Jacob which I never turn down those opportunities (I was much more thrilled for Caleb to hold him, as opposed to him jumping like a wild kangaroo.)  As he was holding Jacob he began to sing 'O be careful little eyes what you see, for the Father up above is looking down in love, O be careful little eyes what you see.'  He sang every verse...O be careful little ears...mouth...hands....feet.  It was beyond precious.  Of all songs to sing to a brother who will never see in clarity, who will never hear properly, who will never speak a word, who's hands will never have purposeful movements and who's feet will never walk.  I soaked in the love!!   My heart was rejoicing, rejoicing in so many ways.  Rejoicing with the blessing that Jacob has a brother that loves him beyond words.  Rejoicing that Jacob is spared from so many sins.  Rejoicing that even though we can't reach his heart, God can reach his heart, also through a song sung from his brother's mouth in true love.

Caleb singing to his brother who was very cooperative!

Enjoying the bouncing

Today's Meetings

Well, I'm going to start with an exciting story (at least for me it was!)  Today I went to pick up Jacob from the home, CPRI, in London.  He was super content in their snoezelen room when I arrived.  That is always a welcome treat to leave or pick him up when he's happy.  I walked into the room and said 'Hi Jacob.'  Instantly he pouted and did a whiny cry.  To most moms it's not the best welcome from a child, but for Jacob, I'll gladly take any deliberate response!!!! His cry was saying, 'Mommy, please pick me up!!'  I sure did.  He was soaking in the love.  What a beautiful moment.  As I was leaving, the child life worker was thrilled to see Jacob so alert and happy :) 

CPRI had arranged a meeting to get the team together and discuss the current status.   That meeting was scheduled for today, just before I would pick up Jacob.  The only thing I knew about the meeting was that once again I was going to be sitting around a large conference table with people with A LOT more knowledge and education than I have. 
Jacob's dedicated paediatrician was present, along with CPRI's paediatrician.  Lisa Pearlman, Nurse Practioner, was also giving her wise advice along the way!  Wow, I have high regards for that lady.   Many others were there (I believe 13 in total) all giving their input into where we are today with Jacob, and where we are heading.  Paul and I are called to make some heavy decisions in the near future about the amount of care he receives at the homes.  Thankfully a decision doesn't have to be made today!  I need some time for my brain to unwind.   Those meetings are crucial in Jacob's care, but can be overwhelming to say the least.

Three things stood out from today's meeting.
#1 - it was confirmed that Jacob's irritability is progressively getting worse. 
#2 - Jacob is one of the most irritable children that many on the team have followed.  They are also feeling like they are running out of options.  There's not a whole lot of avenues to explore.  Dr. Kerr and Lisa were going to talk with our Neurologist about some medication options.  I'll let them do the research :) and have them let me know what they have found out, and then Paul and I can take it from there.
#3 - we have a GREAT team walking this path beside us!!  Without each and every one playing their part, things would be much harder for us in the home!!   We have been blessed beyond what we can comprehend at this time.  God is faithful!!

Finding the Balance

 

Every parent would understand to some measure how difficult it can be to find the balance regarding raising a family!  Between time, children with different personalities, church functions, extended family, friends and money, just to name a few, things can get demanding and tough!

It seems like finding the balance is an ongoing struggle!  So often I catch myself saying ' it's trying to find the balance.'  To be honest, more often than not, the balance around here feels quite lopsided!  It's tough to get it balanced. 

We need to find the balance regarding time with a special needs, time demanding, energy exhausting son and 3 healthy, typical kids.  How much time do we take for Jacob, knowing his days are numbered, yet not forsaking our other children?  Yes, we are unsure of the length of days with our other children too, as with ourselves, but it stares us in the face every day that Jacob's life is humanly speaking - short.  How short we do not know, but we do know, far shorter than normal!  How do we spend the time with our other children as they also are only young once?  It's not that we can press the pause button and have them pause in life. 

We need to find the balance regarding respite time.  Jacob goes once a month for 3-6 days to a respite home.  Without those homes, I don't know where we'd be - other than we'd long have fallen off the balance!  When he goes, how do we balance our time with family, friends, shopping for necessities AND rest?  When Jacob's home, it's beyond difficult to get out, so many things pile up for that one week a month when he's gone.  By the time the week is over, I'm left feeling more exhausted than when I began.  

We need to find the balance regarding raising our kids with a special needs brother and his care and concerns.  How much do we tell them?  When do we tell them?  Do we tell them that Jacob had a lengthy apnea (not breathing) spell, or do we just put on a good front as if nothing happened?  Do we tell Breanne, or do we not tell her?  If so, how do we tell her?  How much do we prepare them for the days ahead, or do we let them be kids, living the typical care free days?  What do we tell each of the kids as they all handle the situation differently and are at different maturity points?  

We need to find the balance as a husband and wife to have quality time together.  That's tough as Jacob's demands get bigger and his irritability increases.  It's pretty tough to have a heart to heart conversation with Jacob crying hard in our ears.  The more stress that is thrown our way, the more we need each other’s support, love and undivided attention!! 

We need to find the balance with work that has to be done inside the house and out.  I can't function in an upside down house, yet, there are days, I feel like I should invest in a pole vault to get from one side to the other!  It's finding that balance between wanting it done and feasibility.  Its finding the balance to be able to say, ‘tomorrow is another day, and if it doesn't get done tomorrow, we can tackle it another day.’ 

We (I mostly)need to find the balance between getting proper sleep and spending adult time with the night nurses :)  This one is so for me only.  All our nurses past and present know exactly what Paul’s report is going to be if I'm not home - 'Jacob had a pretty good day.  Good night.'  They all get a kick out of it.  My reports don't quite go like that!  Seeing how I used to get out of the house on an almost daily basis before Jacob was born, it was a tough transition to be housebound 6 days a week!    All that said, if I stay up late, it back fires on me, as I then need toothpicks to keep my eyes open the next day.  Balance?  Not found on this point AT ALL!!

We need to find the balance for church, bible study and personal devotion.  Jacob's life is unpredictable, so a set time is not possible, yet time is so crucial!  God must be the focus and centre of our being, yet, it's so easy to have the cares of the day override it all.

We need to find the balance with many other things also. I'm unsure how to find the balance!  It's a constant struggle.  Every day we are faced with the realities that this life is tough, yet, one that isn't without hope.  There is an element of comfort in this all.  Our times are in His hands.  He sees our daily struggles and He can sanctify them. 

Continuing On

Well it's been a while since I've wrote my thoughts down here.  It's been several weeks of studying, learning and observing.  As a couple, we are trying to prepare ourselves for what lies ahead.  We have learned that we can never prepare ourselves emotionally for the loss which is inevitable.  Yet, we feel we are to be prepared (as much as possible) to deal with our children as they will also be called to carry a heavy weight on their shoulders.  The girls have noticed things lately with Jacob and thankfully they have been understanding and patient, yet, sometimes quiet, sometimes questioning and sometimes confused.  We follow in their thoughts.  It's mixed emotions and thoughts continually.  

It's not that we feel that we are losing our little guy now or we will in the next week (yet, it remains so uncertain what a week from now will bring.)  It's just that we've seen more negatives in the last week which always brings with it a boat load of concern.  

Jacob is having more unknown fever spikes accompanied with low oxygen saturation and extremely high heart rate.  After 5 or so hours, he's back to being the normal Jacob.  Bizarre.  
Yesterday he had a lengthy seizure, which is the first one we've seen of that nature since last November.   Again, the reason why he is experiencing these things remain unclear.   

His irritability is through the roof lately.  Wow!!  I'm really hoping that it's teething related, but I’m unsure at this point. 

A little while ago I was talking with someone from our team and this is exactly what she said about our situation, considering Jacob's degenerative brain condition, "The most painful piece is living the paradox of hoping for improvement or at least some stability for improved quality of life with the dread of knowing that each new unusual finding is likely related to his degenerative disease."  It sums up what we live with each and every day.  

In amongst all discouragements there are many encouragements along the way.  We have the comfort of knowing that we are upheld on the wings of prayer on a daily basis.  That's powerful!  What a blessing. 

We have been blessed with a GREAT nursing team!  They are an amazing group of nurses!  We see the hand of God in this too.  After a lengthy rough time, we are equipped with nurses who are caring, compassionate and knowledgeable. 

We also know that God makes no mistakes - Jacob was placed on our path at the perfect time and for a purpose.  This thought is echoed by Dr. Beeke in his book Portraits of Faith, 'I say to you without any hesitation that God has never made one mistake with you in your entire life.  He has never given you one cross too many or one cross too few.  He has never given you a cross that did not profit you.  What you need is daily, genuine, submissive faith: faith to say amen to God's ways, faith to receive what he in his inscrutable wisdom deems fitting to put upon you. You need faith to trust him with every affliction.'    Oh, so much to learn, over and over again!!  Yet, what a pleading ground with an Almighty God! 

The Portraits of Faith has been an enormous comfort as we walk down this path, with no map to guide us.  We are simply called to lean hard on God for every step. 

Homeward Bound

Two years ago today was the day we brought our little man home for the first time.  Homeward bound!  A day  full of mixed emotions.  A day I was thrilled to leave the hospital, yet feeling the hospital as a source of security.  If anything went wrong, nurses and doctors were only a few short steps away.  Not at home though.  We were on our own.  

Amazingly, we can still cherish Jacob's love that he gives us every day.  

We love Jacob more with each passing day.  

Simply Said Photography on behalf of Helping Hearts captured some super special moments.  As I looked through the pictures, some brought tears, some brought smiles, and some brought full laughter.  Jacob receives a 10 out of 10 for expressions!!  Here are a few of our favourites!!  We have been truly blessed! 

Thanks Melissa for such a great job!