Snoezelen

      Today we had an appointment at the Snoezelen Room in Tillsonburg.  It is a therapy room which works on Jacob's sensory system.  They work with sounds, lights, vibrations and touch.  We've been several times now, all with varying effects.

      One time he responded to the moving lights on the ceiling, but that was it.  We couldn't add music or any vibrations.  Another time, he was just plain fussy.  We didn't accomplish a whole lot that time! 
     Today was very different.   He responded positively to everything the physiotherapist and occupational therapist tried.

We placed Jacob in the 'leaf chair.'  It is a lounger type chair, that sways with any little motion.  He LOVED it today.  It really stimulated him to move.   He was smiling, cooing and kicking a lot.  When Jacob smiles, it is so contagious.  We were all thrilled.  He was so alert to his surroundings today.

In the snoezelen room there are many different themes for lighting up the ceiling. We picked 'space' today, simply because there are more bright colours, which Jacob seems to respond more to. The shapes and colours change continually, which makes it very interesting to see if there are certain colours, movements he sees more than others. Today we noticed he kept gravitating to the reds, yellows and oranges. Earth colours weren't his thing, but that's ok. We are excited with any little development.

Mary Ellen, the PT comes up with amazing ideas every time she works with Jacob.  She wanted to experiment with the tube lighting.  The room is quite dark (good thing for the flash on the camera,) so the tubing lit up very well.  He kept looking at it, but could never fix his eyes on it for long.  His brain doesn't send the right signals.  Mary Ellen put half of the tubes on his stomach and he instantly moved his arms and hands.  He wanted to grab it!  We've never seen that kind of response yet.  As soon as she removed them, he put his arms down by his side.  It was so exciting to see!  I was overwhelmed.  A month ago, I was shopping for funeral clothes, and now Jacob is showing us new developments.  Praise God from whom all blessings flow.  

After 45 minutes of constant stimulation, he fell fast asleep!  What a perfect ending.  That meant that his brain was not over stimulated - which can have negative effects for many hours. It's very easy to be overstimulated with Jacob's disorder and very difficult to find the balance when to stop in a therapy session, when he seems to be responding so well.   

The road we travel continues to be a roller coaster ride.   It has many ups and downs.  With so much thankfulness we are able to experience a day like today.  Jacob being content, seeming to respond to his surroundings and over all very observant. 

God has blessed us so much more than we deserve!  We are humbled!  We feel that we have been anxious so many times in which we were looking at ourselves too much.   

Spur of the Moment

      Spur of the moment.  That's the life we so often live.  Things go different than expected, and we just have to roll with the punches.

      Last week was no exception.

      We received a phone call on Monday afternoon from the respite home that they had a cancellation, so Jacob could come in on Monday, Tuesday or Wednesday instead of Thursday.  We decided on Tuesday.  It takes hours to pack for Jacob to go to Kids Country Club.  All medications must be recorded with proper dosages, times, and amounts.   All treatments that are required must be recorded in great detail.  All the clothes and receiving blankets that are sent, must be documented - size, colour, brand etc.  All his feeding supplies (bottles, syringes, formula) have to be packed and accounted for.  Plus all his baby stuff (diapers, wipes, stroller etc) have to be gathered and packed.  Also, everything has to be labeled.  It is quite a process, but well worth the effort, as we get some down time. 

     This admission, Jacob wasn't really content.  They tried Tylenol, but it didn't do anything, so they were quite sure he wasn't in pain.  They presumed he was just wanting home.  It was all confirmed when I walked in to pick him up.  As soon as he heard my voice, he smiled:)  The nurse handed him over, and all he did was coo and smile.  Needless to say, someone else was smiling:)  Ever since we've brought him home, he's been very content, even on his own.  That shows us, that he likes it at home.  It makes it much harder for us to bring him away.  We are now stuck between a rock and a hard place.  We need some down time, yet do we want to purposefully put Jacob in an unhappy situation?!

     With Jacob leaving 2 days earlier than we counted on, we had a couple extra days in which we could do things with the other kids. 

     Spur of the moment, we went to the beach on Wednesday.  The weather was amazing, and the kids had so much fun playing with their cousins in the water and sand.

      On Wednesday, Paul called me and said that he got Thursday off, so we could go to Marineland (spur of the moment.)  We received tickets a while ago from Marineland, as they are very supportive of families with special needs children.  Again, the weather was great, and the day was enjoyed by everyone.  The only disappointment we had was that the kids didn't get wet watching the dolphin show.  They really wanted to get wet, but they didn't. 

Breanne enjoying some time with the deer

Paul and Caleb having fun - watch out!

Learning about the beluga whales.  They LOVED the baby whales!

     On the way home, spur of the moment, we thought to check out the Welland Canel.  We saw a huge Laker going through the locks...the kids were thrilled.

The Laker filled the lock.

     We came home quite late, with three tired but happy kids.

     Now it is back to our routine with Jacob close by.  I missed him incredibly, so it's wonderful to have him home again. 

Knock Knock

Nerves can have an impact on many events in life, and Thursday morning was no exception.  2:00am rolls around and our night nurse knocks on our bedroom door.  That's never a good thing!  We've been woken up several times before, for such things as; a faulty feeding pump, respiratory distress, concerned elevated temperature, feeding tube part-way out etc.  I stumble out of bed, with my mind racing...what will it be this time.  I come out to the living room, where I'm greeted by our nurse with a blanket wrapped tightly around her, covering her from her nose to her toes.  She quickly says, 'I hate to wake you up, but... there's a bat in the house.'  I quickly tell Paul, and I suddenly burst out laughing.  Michelle (the nurse) was really not impressed with the bat, and really not impressed with me laughing so hard.  I reassured her that I don't care for bats, but compared to what I was expecting, a bat seemed very minimal. 

We looked for about 20 minutes but found no bat.  We went back to bed, but with our door open, just in case it came back all she had to do was call us.  Sure enough, about 20 minutes later, I hear a loud noise coming from the chair.  I was curious if our flying friend made it's way back into her presence.  'Michelle, is the bat back,' I questioned.  No response.  'Michelle?'  No response.  'Michelle do you see the bat again,' I asked a bit more loudly this time.  She finally replied frantically 'Yes, and it's flying right by my head!!' 

Paul and I jump out of bed with our 'weapons' in our hand.  Paul kept trying to get it, and one time, smashed into the coffee table.  That did it for me.  I literally fell on the couch, laughing like I haven't laughed in months.  When I finally could see straight, I looked over at Michelle, just to see her still with the blanket wrapped tightly around her, laughing so hard, she was also crying. 

After many attempts, we had him captured.  Jacob (and the other kids) slept through the whole commotion.   At the end, Michelle told us that she heard something upstairs at 12:00, but it didn't appear until a while later.  I was so puzzled as to why she would wait 2 hours to wake us up.  She sheepishly said, 'I was afraid the bat would fly into me.'  I totally understood, but I still laughed. 
If there is one thing I learned from the whole episode, it is that we can react so differently in a situation, depending on the circumstances.  I've really despised bats previously, but now I realize, it could be much worse than a bat flying around at night. 

Thankful

      Today was indeed a day in which I had much to be thankful for.
     
      It all started yesterday when Marije said that she would watch Jacob through the night.  We are short nursing hours for July, so three times in the month we have no night nurse.   It can be exhausting if Jacob is awake for most of the night, plus having to watch 4 children the next day.  I sure never asked her if she would be willing to take a night shift, but I could tell when she mentioned it that she would love to do it.  She worked with Jacob the whole day Thursday, plus she had to work this afternoon, so we arranged that Paul would get up, and she could leave at 5:00am.  Instead of me getting little to no sleep, I was able to get almost 8 hours:) Jacob slept for most of the time she was here, so hopefully it wasn't too stressful.  She still had to monitor his vitals, hang new feeds, administer meds and...deal with Sheryl who had spider webs in her bed.  I guess Sheryl got out of bed door and asked for Daddy.  Marije made sure that we didn't hear, so she went upstairs and got rid of all the spider webs (which weren't there to start with.)  Sheryl felt much better, and it gave Marije something to chuckle about.  Thanks so much Marije!  She has been such a blessing to us. 

     My mom came this morning to help me out, which always makes me thankful.  I went away with our other children for a few hours, which is so important for them.  It's so easy to be focused on Jacob, that the other kids play second fiddle.  When I got home, my mom fed the kids lunch and I went for a nap.  It doesn't happen often, but when I get the opportunity, I take advantage of it.  My mom is so calm with Jacob, which Jacob responds well to.   My mom was been a huge asset in helping us through this trial.  Thanks Mom:)

My mom with Jacob

     On Thursday, we had our physio therapist over to work (play) with Jacob.  She always says that Mom and Dad know the child best, but it sure helps to have their wealth of knowledge come through our door.  Mary Ellen is so loving and knowledgeable.  She's thought of many amazing ideas regarding Jacob's care.  Mary Ellen's counterpart Kathy (OT) didn't come out this time, but the two together make a fantastic team.

Mary Ellen working with Jacob

Smiles

     Yesterday was a day in which we could smile.  My dear sister came with her children to help us out around the house.  It's always nice to spend a day with family (even if that means work.)  The yard looks in tip top shape again:)  Spending time with our other children, nieces and a nephew sure add joy to any day.  Marije (our respite worker) came to watch Jacob, so we could get more work done.  She is one who truthfully thinks outside the box!   

Marije experimenting with an inflatable pool tube. 
Jacob spends time in that tube every day - he really enjoys it!!

     Once Denise and Marije were gone, it was back to caring for Jacob.  He loves it when we hold him.  So, I was doing what I do for many hours most days - holding him.  All of a sudden I saw a smile, something which we hardly see any more!  It used to be a common occurrence - not any more.  He was full of smiles, so Breanne quickly got the camera.  She captured a video of him smiling and giggling (I tried to upload it, but it didn't work.  I'll try again later.)  It added so much joy, considering the days in which we've been living.

      This morning we had a meeting at the hospital regarding his current state and where we can go from here.  Paul came with, something which I'm more than thankful for.  So often I feel that God provides for us in this regards also, considering his employer allows him to have the days off for these meetings.  It could be much different. 

     To summarize our meeting, we are going to continue with his feeding tube, only making slight changes to his current meds and feeds.  We are adding a different medication to help with is unexplained irritable periods.  He seems to have more fussy periods, where it is much harder to comfort him.  He will stay on oxygen to help him with the times in which his oxygen saturation drops drastically.  For the most part though, he doesn't need oxygen anymore:) 

      As a whole, things are not really going in the direction we would like to see them go.  Our goal is to keep him comfortable as possible.  Hopefully with the Lords blessing the new med will help out.

      After the meeting, our dear case manager, Becky, stayed to talk with just Paul and I.  She puts into place most medical things that happen in our home.  She oversees a lot, and we are so thankful to have her as part of our team:)  She has a heart of gold!!  She said something that really struck me.  We were talking about Jacob's care and condition when she said, 'Sometimes instead of speed bumps, we have speed mountains.'  So true.  It seems like in Jacob's life, we've experienced few speed bumps, but many speed mountains! 
    
    Jacob responds very well to Caleb.  Truthfully, I'm not sure why, because Caleb is not always the most calm and loving three year old!!  I love to watch the two in their own world communicating!!
Here's the two of them:)