Wednesday, 27 January 2016

Another Therapy Session

Today is Wednesday.  This means that the boys are both in daycare and I am home alone.  I've done the dishes, put some laundry away, did a devo, and tidied things up, so now it's time for some *relaxation therapy. 


*Relaxation therapy = Listening to the Decemberists, drinking coffee and playing with some water paint in the beautiful sunshine coming in through my window.

This is distracting me from my worries.
- Gideon threw up again yesterday at daycare and his coughing and breathing are not exactly on target.  We are seeing our pediatrician today.  I really hope the pneumonia is not back again.
- We saw genetics last week.  We have now applied for approval to have the "Whole Exome Sequencing" genetic test funded.  This will take months.  Once we have approval to have this test covered, we (John, Gideon and I) will all submit blood samples to test.  The results of this blood test can take up to a whole year for results.  And so the wait continues...    
- We  had our first consult with a neurologist last week too. We looked at the MRI he had in Sept and over all there are not any really big structural abnormalities.  This is good.  What is worrying is that his myelin sheath (the nerve/axon coverings) in parts of his cortex are not quite the thickness they would expect for someone his age.  This could change the speed of the transmissions coming to or from his brain.  This change in speed could result in numerous different outcomes-  Behavioral changes, comprehension/learning difficulties, ability to focus etc.  The thing is though that these nerve coverings are not fully developed until around the age of two so this means there could still be some changes/brain development to occur.  She has recommended another MRI.  There was also the suggestion that we should keep our eyes open for possible signs of Gideon having a seizure- not necessarily the full out shaking kind, but the more subtle type that could look like spacing out, repeated muscle tensions or reflexive movements.  If we suspect something is going on than we should have an EEG done.  


And so I turn to my distractions.         

What are your distraction techniques, that pull your eyes and mind away from the chaos that life meets? 

Thursday, 14 January 2016

Monday, 11 January 2016

Asthma now too?

Gideon was hospitalized again last Wednesday with a possible aspiration pneumonia and an asthma exasperation on top.  This is news to us.  We didn't know that he could have asthma.  He even stopped eating for a day.  I think the aspiration occurred while he was vomiting over Christmas.

We are home now.  It always feels so good to come home.  Even Gideon seemed happier to be at home.  This means more antibiotics and more puffers.  So far he has only vomited once since we've been home (unfortunately it was right after he had taken his antibiotics)  and he has been sleeping lots.  He also has way more energy since before the hospitalization and is moving and vocalizing more.  His feeds are still so-so but I think over all he is on the up- I hope.  

I wish I knew what was making him have these vomiting episodes.  Is it an imbalance?  Is he just more prone to picking up bugs?  Does he have an allergy? Is there a structural issue?  Is his gagging leading to vomiting due to an oral sensory issue?   Is the asthma making it harder for him to breath thus exasperating his aspiration and inducing a vomiting session?  Or maybe it is a combination of all of the above?

I'm always looking for answers- but I need to come to a point of acceptance that sometimes life doesn't hold any; That there are unknowns out there that are beyond my comprehension and things that will always be unexplained.  This is something I still need to come to terms with.  I need to stop looking and start having faith in Gideon as he is, leaving all my questions behind, moving forward with a healthy "who cares attitude".  Somethings matter and other things don't and I guess I should reexamine these priorities and leave my obsessive Answer Quest behind.  I think this would look like a laid back, living in the moment type of lifestyle that is selective of my passions.

Monday, 4 January 2016

The Blame Game and a Reality Check

It feels like I often use Gideon's low vision as an excuse for many of his delays.

He's not crawling or sitting on his own? - Oh, kids with visual impairments can have gross motor delays.  I've heard they can even be up to a year behind.  No or little visual stimuli will mean decreased motivation for looking around, making his neck muscles weak.

He's not transitioning to solids? - Oh, I guess he hasn't been able to see us to model that behavior.  Also he has a hard time seeing the food coming so.. maybe it's been a startling or jarring experience.

He's still mouthing his toys? - He's just looking for tactile experiences, plus he's not been able to see how to play with them through modeling.

Theses are really just cop outs.  I know the vision piece is part of the issue but it is not the whole reason for all the delays.  I'm sure there is far more going on, things I don't want to admit to.  I know he has low tone.  I know he has a gross motor delay.  I know he is delayed developmentally.

---
Today we met with our Physio therapist along with the vendor for our new stander.  Casually, while filling out some forms to have the stander partially covered, physio asked if we had looked at wheel chairs for Gideon. *heart sinks and lump in throat emerges* There really hasn't been much talk about Gideon's prognosis or his very slow progress.  I said that at this point he was still light enough to carry around and that we had just transitioned out of the bucket car seat.  She indicates that we can fill out the forms now to just cover the stander and always update them later... if we need to.

Does it get any easier, having your hopes and expectations squashed?




Happy New Year

Happy New Year Everyone!

I made Oliebollen (spelling?) a Dutch new years treat for my husband this year.  Disclosure- My side of the family is not Dutch and I've never really made these before.  I found a recipe on the good ol' internets.    I was worried that the oil was going to be too hot and that the insides might not cook but I think they turned out well.  None of the ones I ate were under-cooked. John said he didn't want raisins in them, so I put apple in them instead.  I think I could have put a bit more in, but I'll know for next time.  Traditionally these are eaten with powdered sugar but I didn't have any, so I just put some white sugar into my coffee grinder and made some of my own.  

I'm not much of a deep fryer and I really don't know what to do with the left over oil. Any suggestions?

While I was making the Oliebollen, John put on an Andre Rieu DVD that was my father-in-laws.  This was a nice surprise.  Albert really enjoyed watching these and listening to the "Flying Dutchman".  It's nice to carry on some traditions within our own family.  

New years day was full of warm happy feelings and full tummies!

What new years traditions do your families keep?  Do you have tips or additions for my oliebollen?