Saturday, 5 October 2013

Thank you!

We had a community meeting on Friday to discuss the latest observations regarding Jacob.  The meeting involved most of the people who are involved from the community.  It was a relaxed meeting, but one of the most encouraging meetings we've had to date!  We have a GREAT group walking this path beside us!
Becky, our case manager lead the meeting.  She is one who's understanding and compassion goes above and beyond the average person out there (even in the medical world!)  Her listening ear is always ready to listen to our joys, sorrows, pains, concerns and amazement's.  Her one observation that really stuck yesterday was that Jacob is teaching all of us!  When we all thought he was heading in a certain direction, the path changed and now he is on a different path (and a much better one!!)

Next, they asked me to share my findings in the last few months.  It was short, but I was thrilled to say only positive things!!!  He's still gaining weight (he hit the 11kg this week).  We've been seeing plenty of smiles and giggles this week, let alone periodic coos in response. Also, Marije and I just completed an infant (well, and maybe not such an infant) massage course which he responded extremely well with.  It was super fun.

One of the MANY smiles we saw yesterday!

Our weekly nurse gave a report saying how difficult it is to diagnose Jacob, because of the abnormalities of the brain stem.  A fever could mean nothing, but if he should have a fever, he may not have one.  This aspect makes it hard to figure him out.  Basically she summed it up that we must take Jacob each and every day as he is and deal with what he gives us.  We've been told that we have one of Oxford County's best visiting nurses.  Providence!!  She's been with us the longest of anyone in the community, and has sure walked this road, compassionately right beside us.

O.T. and P.T. summed up their time with Jacob as one that is continually changing.  Jacob needs frequent position changes and chest physio to keep his lungs in tip top shape.  Incorporating different play options is vital to keep his body in moving, workable condition.  They are such a fun pair!  I feel spoiled to have them working with us! 

Our nurse manager gave the report of the struggles with night nursing - nurses leaving for different jobs, nights not being able to get filled, communication issues and several other issues.  We're hoping that in the future this part of our life gets easier!!

The social worker talked about the success we just had regarding funding for the hi-low base and extra respite. She was still excited for us.  She does all the paperwork for most of the government and funding applications, as  I would need a PHD to understand them :(  She sure makes our life much easier.  Hats off to Tammy!

Community Living Tillsonburg was also represented and talked about the snoezelen room and have Jacob's siblings come with Jacob one time, to see exactly what happens in a snoezelen room.  What a great idea!!

The team together is strong, energetic, caring, understanding, supportive and extremely capable.  I love the unity that is felt when they are all together - they are a strong driving force all working for Jacob's comfort.  We feel truly blessed to have each and every one of them involved in our case!  Thank you from the bottom of our hearts!!

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