SCHEDULE IS LOOKING TO CLEAR UP!
It seems our schedule is about to free up for the next month and half. Such great news considering our schedules have been crammed packed full of our jobs, college, kids school homework, kids school activities, and last but def not least [scratch that--the most! NOT least.] we have kids Dr appointments.
LOGANS ASTHMA ATTACK[S].
Right now we're about to follow up on Logan's 2 recent episodes of asthma. Last month he went to the ER regarding a horrific episode leaving him collapsing to the floor from lack of oxygen during his asthma attack. This month we've edited his diet carefully, added certain supplements to help curb his episodes or lessen the attack [Magnesium has been highly recommended to us as well as Vitamin C. We've found both of these in a powder form to mix together as a drink to ingest quickly and simplified the whole process]. We also doubled his vitamin intake near the time frame he has his almost on schedule episodes and additionally added Carlson Fish oil [they're based in America and one of the only fish oil companies that you will KNOW do not have heavy metals due to testing, and farm raised fish. Highly recommend them!] This second episode that we had to wait for before we could bring him back to the Allergist has proven to be a bit of a success in terms of a lower attack, his color returned back to normal compared to his yellow tinged skin tone combined with sunken dark eyes and with blue lips he normally gets during the actual episodes, but also the spray they gave us actually helped his attack stop in it's tracks. What a huge relief! We can check mark this off as a slight success despite the still reoccurring asthma attack. It'd be great to have this asthma disappear, if possible. Nothing is ever impossible.
MY OLDEST + TONSILS REMOVED THIS SUMMER.
Another excellent news we have been approved by the ENT to have my oldest sons [9 years old] Tonsils removed. It has been years of consistent asking, testing, and just hardly missing the mark. But due to an amazing Dr and ENT we've had it approved within 2 appointments not even a week apart from each other. What a simpler and painless process. I'm sure he won't be saying that after the surgery though! This is a huge relief and one of the things I can mark off of my to-do list which makes me feel greatly accomplished. Now to follow up with the receptionist since she has yet to give us a call to make that appointment..I can't wait for him. He'll be able to focus better, get better quality of sleep, not have horrible throat problems, snoring, we're also hoping it'll help with his speech therapy on it's own, and so much more. This will happen during summer so we of course don't miss out on any school. I do not like the kids having tardies or even absences.
Now..relating to Colin with the most intense form of Stickler Syndrome. We have started to clear up appointments, to-do's, major schedule tasks, and more...so now we can focus towards creating some more appointments for Colin. The beginning of next month we're going to be going an ERG to determine a base line on his Retina's. This is to determine any future inevitable degeneration on his Retina's. As mentioned in previous blog posts, they're going to have 3 people over seeing this exam under anesthesia. We will have the amazing Neuro-opthomologist Leah Reznik who discovered he has Stickler Syndrome, with an Eye Geneticists, and a Retina Specialist. Right now she has been completely honest about this unexplained light sensitive issues and says it makes her completely perplexed. We really hope that answers happen during this next visit. Only time and beautiful technology will hopefully offer us the answers that we're seeking. Otherwise, we just keep trying to do the best we can with him on a daily basis. Other appointments we're going to now start with all of our current activities out of the way is OT & PT to help increase his muscle tone to help the health of his joints from delaying or preventing Degeneration of his joints into early onset of Osteoarthritis that goes hand in hand with Stickler Syndrome. OT is to help his SPD. This Sensory Processing Disorder [SPD] has been quite a new struggle over the past year. Too much stimulus can set him off to an overactive behavior. Or if it's not that, his body aches and hurts making him far more cranky with this SPD because it just sets him off like pains being magnified because his brain needs to process his sensory experiences better. I honestly don't know if this is because of his extreme high myopia or just something that happens neurologically with Stickler Syndrome. I hope to perhaps find answers to this.
Example of Colins light sensitivity at our oldest
elementary playing outside. Not even direct sunlight.
One additional thing we're saving towards purchasing at this time is prescription type sunglasses for summer time. Summer and the sun has totally snuck up on us! But with that paper from the neurophthalmologist that just arrived in the mail will help us focus onto getting this in place for him. He has been wearing hats which really helps him see better in bright sun light. Otherwise it's extremely difficult. One of the cute things he said recently as we placed him into the car to go out to lunch together was his Leapster is too bright and needs glasses like he does so the Leapster can see to. I thought that was very cute. He has been relating other objects or items as needing glasses as him in a positive way which reassures me as a parent that they are indeed finally the right glasses and making an impact in his daily life. Despite the still extreme low vision.....I will take that. As long as necessary!
Visit to Science center in Portland called OMSI. He had an absolute blast playing with the water which calmed his Sensory Processing Disorder down to calm down. We love this science center!
VITAMINS ARE INCREASED FOR EYE HEALTH.
Speaking of vitamins, I have also been offering him 3 multi vitamins in the morning, Vitamin D chewable, Carlson fish oil chewable in lemon flavor which he LOVES, and Emergen-C drink mixed with regular fruit juice to help lessen the sourness of the drink. Given the reading I've done on health of retina, eye health, and more..it only makes perfect sense for him to double and even triple up on vitamin intake. I also offer him 1-2 vitamins in the evening as well. Results? By doing this so far, we've noticed far less cranky episodes and he's been actually happier moods and not as exhausted and sleepy all the time. We have been a week and half off with out Ibuprofen as well to help his occasional grogginess and pains to help him perk up. I honestly think that it's doing something good within his body and am determined to continue. I know most FDA Vitamin basics are based upon certain criteria. It does not scare me to bypass their recommendations within Vitamins. Prescriptions, sure. Vitamins and a well balanced mostly raw diet..I am totally confident about it improving the quality of his life and eager to see any possible outcomes in delaying any Degenerative outcome of Stickler Syndrome. They're not to make up for what he doesn't eat, they're to compliment it and help give him the extra kick his body most likely is lacking and needs even more than we typically would require.
Traveling with burley bear on his lap and being all messy with his delicious hamburger during a trip up to Seattle. We're going to get a sun visor for inside the van to help with his light sensitivity. I hope we can get answers on his light sensitivity soon!
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