Uncomfortable day..this isn't a new normal.

Just another uncomfortable day for our little guy.

Fatigue. ..and a long blog.

Today was not a comfortable day for Colin. Ibuprofen seemed to help a little. But very fussy, a long nap happened when he normally doesn't nap, and just laying where ever he could. He didn't even want to go to the play area today but stay in the car cart at the store. He was fussy once again with tags in his shirt, his pants, his pj's, his shoes felt 'like needles on his feet' and screams, and screamed when we went outside at the nursery at Freddies to get some plants because it was too bright and hurt his eyes. This has always been a common thing, but subconsciously being patient with him..not knowing the underlining cause of this all these years, until now. He's not sick either, this has a common occurrence for him.

Extreme fatigue is a common occurrence for some one with Stickler Syndrome.  But also pain all over their bodies.  Such as in their bones, joints in particular.  This is one of the reasons we typically do a bath every day or every other day in these situations as I'm extremely fond of Hydrotherapy and all it can do for the body with pain management in the joints or anywhere.  We always put in a small amount of Epsom Salt to pull out the toxins in his body and to release some pains.  It seems to have him perk up and within minutes he's racing out of the bath ready to run around and all excited and happy.  But today, he didn't even want a bath.  He kept telling us "My body is all sleepy all the time all day today" a few times.  

We even went out to eat for breakfast [yay for Shari's breakfast coupons!] just the 2 little boys with us since the 2 older were at school.  He didn't want to sit in the seat.  He preferred to lay down or crawl under the table to try to get comfortable by laying on the ground.  Obviously, we didn't approve so he finally found his way next to me laying down on the seat.  Extremely fatigued and even talking was also exhausting him.  Mind you, he was this way from the moment he woke up til the moment he was supposed to go to bed.    

We've been playing phone tag with all the new specialists calling and determining our new mutual schedules to rotate appointments between all of our daily schedules.  This is extremely limiting with our jobs + college + kids [anything].  But we do the best we can with our schedule we have available.  2 of the Specialists will be the a Physical Therapist [he will need this for the rest of his life for pain management, as well as prolonging the inevitable juvenile degenerative joint disease.  I just wish they could do that for the Retina degenerative disease aspect of Stickler Syndrome to!  

Also, he will be seeing in the same department of this Physical Therapist that is also connected to the Occupational Therapist to deal with the Sensory Processing Disorder.  This aspect of it is, humbly speaking, extremely testing and exhausting part of our day.  We have to find ways to help him calm down, avoid certain things, breathing exercises, child yoga, etc.  After finding SS, we discovered all these things going on with him finally created answers.  It's a blessing but of course we wish we could just take this Genetic condition away from him 100%! SPD in hindsight has seemed to be there since day one but only progressing further within the past year.  It's very unpredictable what one day might bring to the next.  I'm thankful I'm the type of person to welcome improvising!  Nothing in parenting is ever set in stone, it's improve.  We all just do the best we can and strive for the best.  Patience is an added virtue for this to!     

A recent study I recent about preserving Retinal health came from an eye specialist studying Retina's and vitamins and how they both are involved.  It appears high doses of Vitamin A & E seemed to prolong the % greatly with those who suffered detached Retina's vs. those who still had Detached Retina's while on this high amount of vitamin intake over a prolonged period of time.  While we do believe food is medicine we're catering to more micro-nutrients than macro.  That way things are easily digested into his body. 

 One high problem with this also, is IBS which I've been told has been more of a lack of digestion within the body because of the bodies inability to properly break things down within his stomach.  Macro nutrients only takes longer and with more Micro he is seeking to complain less of tummy aches and is having less explosive diapers [potty training is HARD when your child has a depth perception problem and thinks he's going to fall off of the toilet and gets in an extreme panic thinking he's falling!  I'm sure the bigger he gets the more reassured he'll be of this foreign situation, so we pick our battles!].  But also vitamin intake we've increased just a smudge by recommendations.  He has extra D gummies, Carlsons Fish oil [manufactured within the USA and only fish oil with out toxic heavy metals found inside, as they test their products!], and of course 2-3 multivitamins per day.  He asks for water mostly to drink during the day, but occasionally enjoys juice and milk.  I prefer fresh juice from a juicing machine vs. bottles so that is 70% of the time what he gets is fresh micro nutrients through juice.  When we're consistent he does seem to have less fatigue days.  For example, today we didn't take our daily intake of these things until later in the evening.  When he took it in the evening his energy level peeked back up a little but still complained of being in pain.  

Plenty more I could blog about and right now there is many things to juggle that are begging for answers.  For now I will leave it at that and get some sleep for the night so I can take on tomorrow.  

Colin needs new glasses: Care to sponsor this need? 

I plan to write about our next pair of glasses we're seeking [$170 each].  We also need to get him additional transitional lenses as well as sunglasses with prescription lenses.  They're not covered by insurance but none that are fit his lack of nose bridge so his eye lashes get squished into his eyes in order for glasses to properly fit and work.  Thus, we're going to have to pay for a pair out of pocket next.  We are going to see if anyone is interested in sponsoring this for him.  If anyone is interested you can send the funds to our paypal account cambryn@gmail.com to help us with this need.  It is giving him the gift of vision which with this degenerative disease is offering him the gift of seeing things he can not see but 1" from with out glasses. 

Thank you for reading our blog about our sons Journey with Stickler Syndrome!