Nothing is ever set in stone yet it's always rapidly changing which requires creative adapting from. That has always been my understanding in my pretty crazy life lived prior to even having kids. Kids just taught me to kick it up in gear and let it flow naturally and not stress over so many fine details we don't always have control over.
However, I must say from an admittedly strong stance I've had in life leading up to this [perhaps prior situations were to warm me up for what is happening now?] was always hard and always a struggle. Yet now, I've admittedly faced my toughest challenge. Something for years I was extremely thankful and very blessed to consider not having--is a special needs child. I've seen family struggle for generations with them, friends struggle with raising them, and the more kids I have had the more I took a deep breath each time they seemed 'healthy' and stable. As they say, don't always count your chickens before they hatched. But also, listen to those mothers intuitions! I put a foot in my mouth now as I humbly speak out loud saying I do indeed have a special needs child.
This child absolutely an individual name and identity. Colin. Who this person isn't is the medical names of all these medical ailments. I get it, those are totally separate. I've had only a few reminding me that politely or passively. Let me reassure you all. That is the joy of this mother. You do your hard work researching the medical information but when it comes to that bread and butter of a loving bonding time with him all that gets left at the door. Colin is absolutely the most sweetest, kind, loving, and happy boy despite all of the conditions he's had to gleefully face in his little life thus far. This doesn't mean I won't express his conditions, findings, frustrations, exhaustion's, and do a glimpse of educating to my friends in person or Facebook. That doesn't mean my outlook on my son is "poor him! SOB story SOB story.." Merely, while I educate others I reassure myself. To build that support system is those who are able to hear the situation and reciprocate compassion, and empathy. I'm open to constructive criticism as well as feedback but it doesn't mean I will always agree. A few simple caring words and support verbalized here and there goes miles.
What isn't support, in my mind, is having Mikes father lay him off right on the verge of almost being done with college on his end and me just beginning. Not to mention all the out of pocket expenses with Colin and extra gas we've been paying out for lately. As many might know, we've had a long term estranged relationship for which I won't go into detail unless you'd like to come to me personally and discuss. What matters if that the focus is put onto my 4 boys at this time and hopefully they can work past their issues.
We have decided to have a quiet respectful Holiday season low key of any extra stress, drama, or harassment. If any extended family members would like to reach us they can do so directly on here, email, phone, etc. We won't be speaking with Mikes parents or his half sister Marci, at all during this Holiday season and we won't speak with extended family through them. Please come to us directly. After all the diagnosis with Colin, we want to spend time with Colin and not have extra stress or chaos in our lives. We want to focus on the 4 boys and give them the best Holiday season they all deserve. Also, if Colin does indeed have this extremely rare CDD Autistic condition we want to make sure to invest into a video camera and capture all these precious moments with him now.
Thanks and much love to those who have continued to show their love and support,
Carpe Diem!
Showing posts with label high myopia. Show all posts
Showing posts with label high myopia. Show all posts
Saturday, October 20, 2012
Saturday, July 7, 2012
Low iron is common within Sticklers
There's an extremely valuable fan page groups on Facebook that has enabled many Stickler Syndrome families to connect with and bounce off of each other similarities and differences between health, symptoms, resources on what helps others, and such.
One of the recent health criteria that many of the families have been discussing is low iron levels. For kids and actual adults diagnosed with Stickler Syndrome. There has been 4 other mothers now who have said either that themselves and/or their kids have had extreme low Iron levels. Colins has been around 10 which I believe you want it around 4. No matter the supplements or diet changes his levels wouldn't change until he was around 2 years of age. He still has low iron levels. I'm not sure why this is or what causes this but it appears to be more common among Type 1 Stickler Syndrome patients. There is 5 common types of Stickler Genes that give a random variety of symptoms [one being perfect vision but abnormal Astigmatism present which is what Logan has] and the more further back in generations Stickler syndrome has mutated the more likely hood the kids have to getting all of these as well as mutated versions that they haven't seen much or ever seen. That is why it's good to know family history as accurate as possible for Colin's diagnosis.
Braetens' Iron level also came up low recently to. He was around 8 and the Pediatrician ordered another test to follow up with. It's also difficult to create certain diet needs when there is sensory problems involved. Braeten has been rejecting food just like Colin has which limits his intake and really does make me become more creative on how to get him to take the foods they both need to eat. I'm not one of those parents who just say forget it and give up though. There is always a way. I'd rather find a way than have my kids be picky, selective, and continue to be unhealthy.
Colins appointment is coming up. Lots to be discussed with the Dr regarding that. But another Iron level test will be in order. Along with some other special requests and specialists that I will discuss in another blog.
Also, yesterday he had his ERG which we haven't heard back on results. Before we've been explained about an overview or problems noticed, etc. It has been a bit concerned. They're sending the images from this study and testing to Colleges, the ERG machine hardware company, and anyone else interested in seeing the results. Because this is something new that would help improve their research and development and get further answers. Because the nature of his eyes are so unique this prompted them to pursue this testing to determine the base line health of his Retinas [for when things do get worse, we can compared to his base line], check Glaucoma pressure within his eyes as he's a suspect, how well his eyes adapt to light vs. dark [light issues with his eyes properly dilating has been under observance as his eyes dilate reverse of what they should. They also are looking into Cone Deficiency.].
What all is going on? I should know soon when the week begins again. This is an exam that the Retinal Specialist reviewed results and the Genetic eye Dr over saw with his Neuro Ophthalmologist. I have complete faith in them to find results. I will just have to keep waiting to hear those results. I'm not sure what to expect or trying to get any expectation in my head and just allow any possibility to be presented and take it as it comes and do with it the best I can with what I have.
One of the recent health criteria that many of the families have been discussing is low iron levels. For kids and actual adults diagnosed with Stickler Syndrome. There has been 4 other mothers now who have said either that themselves and/or their kids have had extreme low Iron levels. Colins has been around 10 which I believe you want it around 4. No matter the supplements or diet changes his levels wouldn't change until he was around 2 years of age. He still has low iron levels. I'm not sure why this is or what causes this but it appears to be more common among Type 1 Stickler Syndrome patients. There is 5 common types of Stickler Genes that give a random variety of symptoms [one being perfect vision but abnormal Astigmatism present which is what Logan has] and the more further back in generations Stickler syndrome has mutated the more likely hood the kids have to getting all of these as well as mutated versions that they haven't seen much or ever seen. That is why it's good to know family history as accurate as possible for Colin's diagnosis.
Braetens' Iron level also came up low recently to. He was around 8 and the Pediatrician ordered another test to follow up with. It's also difficult to create certain diet needs when there is sensory problems involved. Braeten has been rejecting food just like Colin has which limits his intake and really does make me become more creative on how to get him to take the foods they both need to eat. I'm not one of those parents who just say forget it and give up though. There is always a way. I'd rather find a way than have my kids be picky, selective, and continue to be unhealthy.
Colins appointment is coming up. Lots to be discussed with the Dr regarding that. But another Iron level test will be in order. Along with some other special requests and specialists that I will discuss in another blog.
Also, yesterday he had his ERG which we haven't heard back on results. Before we've been explained about an overview or problems noticed, etc. It has been a bit concerned. They're sending the images from this study and testing to Colleges, the ERG machine hardware company, and anyone else interested in seeing the results. Because this is something new that would help improve their research and development and get further answers. Because the nature of his eyes are so unique this prompted them to pursue this testing to determine the base line health of his Retinas [for when things do get worse, we can compared to his base line], check Glaucoma pressure within his eyes as he's a suspect, how well his eyes adapt to light vs. dark [light issues with his eyes properly dilating has been under observance as his eyes dilate reverse of what they should. They also are looking into Cone Deficiency.].
What all is going on? I should know soon when the week begins again. This is an exam that the Retinal Specialist reviewed results and the Genetic eye Dr over saw with his Neuro Ophthalmologist. I have complete faith in them to find results. I will just have to keep waiting to hear those results. I'm not sure what to expect or trying to get any expectation in my head and just allow any possibility to be presented and take it as it comes and do with it the best I can with what I have.
Tuesday, June 19, 2012
Wednesday, June 13, 2012
It's been busy!
A quick catch up blog..excuse the errors as I need to get onto more immediate projects in place...
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.
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!
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.
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!
Tuesday, May 22, 2012
Busy!
It has been rather busy lately with massive amounts of appointments for each of the kids. Our schedules are starting to clear up further to make way for other activities around the corner which is such a relief. For example, we had our 6 year old last week have a major Asthma attack. This was the worst one yet he's had. We rushed him to the ER to get checked up and they gave him some Steroids to reduce his inflammation within his lungs and once he had that his breathing released quicker than anything else we've ever seen release it before. We're currently seeing an allergist regarding potential allergies that a previous Pediatrician and urgent care thought it might be. The scratch and poke test turned out to not have any allergies show up..at all. However, this scratch and poke test didn't help us determine if there is any food allergies that might of shown us more.
There is plenty of diets that appear to help asthma or the severity of by excluding eggs, corn products, and more. We're going to try it out to see if that helps. Plus minimize the use of chemical cleaners around the house such as powder carpet odor boosts, sprays, and more. This can irritate and set off Asthma for him or make it worse off than it would be otherwise. One of the things we're going to talk to the geneticists and the pediatrician next is about this being related to Stickler Syndrome. There was some immune system things I found recently related to Stickler syndrome because if you think about it the tube running down to the lungs are made out of the same material collagen has a huge play into creating.
Other than that we have yet to pick out a new pair of glasses for Colin yet. Our trip to the local stores was unsuccessful due to in store product limitation. Lots of the glasses we wanted to try out were not in house or had to be ordered. Quite a bummer considering you won't even know what they'd look like otherwise! They need more of these options in stores for kids to choose from. All additional glasses were lacking the extra build up bridge over the nose to help his lack of. Thus, we left empty handed for now. He at least has the basic pair that presses his eye lashes into his eyes constantly.
We're still waiting to hear back from the insurance regarding his Genetic tests being approved. Once again, if that doesn't pan out we're going to have to fork out around $5-8K per gene tests. There's a basic 5 tests that needs to be screened which means..lots to save up for! Not even including ourselves and the rest of the boys being screened for this to. We are approved for his upcoming ERG to have a basic idea of the health of his Retina's with this screening. It's a pretty impressive screening procedure. I'll post more about how it works later. Also, they're doing an exam under anesthesia to see further the health of his eyes with a Retina Specialist as well as an eye Geneticists and our Neuro Ophthalmologist within the same room. He has this consistent light sensitivity issue that has been long ongoing since he was a newborn. As our specialist has called it "very perplexing" and they want to get to the bottom of it.
That is all for now..haha..lots but still all for now. We're close to arranging more appointments for other specialists and just taking a quick few day breather from it all in the time being. Next one up is the Physical Therapist and Occupational Therapist...
There is plenty of diets that appear to help asthma or the severity of by excluding eggs, corn products, and more. We're going to try it out to see if that helps. Plus minimize the use of chemical cleaners around the house such as powder carpet odor boosts, sprays, and more. This can irritate and set off Asthma for him or make it worse off than it would be otherwise. One of the things we're going to talk to the geneticists and the pediatrician next is about this being related to Stickler Syndrome. There was some immune system things I found recently related to Stickler syndrome because if you think about it the tube running down to the lungs are made out of the same material collagen has a huge play into creating.
Other than that we have yet to pick out a new pair of glasses for Colin yet. Our trip to the local stores was unsuccessful due to in store product limitation. Lots of the glasses we wanted to try out were not in house or had to be ordered. Quite a bummer considering you won't even know what they'd look like otherwise! They need more of these options in stores for kids to choose from. All additional glasses were lacking the extra build up bridge over the nose to help his lack of. Thus, we left empty handed for now. He at least has the basic pair that presses his eye lashes into his eyes constantly.
We're still waiting to hear back from the insurance regarding his Genetic tests being approved. Once again, if that doesn't pan out we're going to have to fork out around $5-8K per gene tests. There's a basic 5 tests that needs to be screened which means..lots to save up for! Not even including ourselves and the rest of the boys being screened for this to. We are approved for his upcoming ERG to have a basic idea of the health of his Retina's with this screening. It's a pretty impressive screening procedure. I'll post more about how it works later. Also, they're doing an exam under anesthesia to see further the health of his eyes with a Retina Specialist as well as an eye Geneticists and our Neuro Ophthalmologist within the same room. He has this consistent light sensitivity issue that has been long ongoing since he was a newborn. As our specialist has called it "very perplexing" and they want to get to the bottom of it.
That is all for now..haha..lots but still all for now. We're close to arranging more appointments for other specialists and just taking a quick few day breather from it all in the time being. Next one up is the Physical Therapist and Occupational Therapist...
Thursday, April 26, 2012
Monday, April 23, 2012
ERG is the next step.
What is the next step for Colin?
Once again, my apoligies for most likely poor spelling as I'm just in a rush and don't really want to edit the whole blog at this time. It's rough around the edges, so hope you can read through the imperfections.
Vision and Phone tag.
We've been playing phone tag with the Neuro-Ophthalmologist since last week to discuss what's the next steps with Colin's vision care. Today at the grocery store I had to juggle this phone call between that blissful one hour of free child care you can get while you shop at their store. Oh, how we do count the simple blessings in life! 1 hour free child for us to catch a break is enough of a blessing for us right now. The 2 ladies we always see are amazing with him, and aware of his vision problems in case anything happens which puts us at great ease. With that said..I'm just going to call the Neuro-Ophthalmologist the 'eye Dr' to simplify things.
Many appointments.
There is many aspects that are having to be addressed with this Stickler Syndrome and all that it entails. Not to mention having to find a minimum of 4 specialists just to get the other kids screened. We're not up to close to 10 specialists now. That means, between all of Colin's MANY appointments we'll additionally have 4 appointments for each of our children. My oldest most likely won't need it. But, if they all do still get screened that means we're going to need around 12 appointments just for the other 3 boys, and Colin himself combined with all those will equal 21 specialist [that's counting if only one visit is needed!]. Our Summer is already filling up quickly with the massive amounts of appointments needed. I won't even say the amount of appointments Colin will need to maintain his vision health plus his body as a whole just to manage pain, comfort level, vision health..the list goes on. We'll be getting to know these specialists by first name basis, which we already have started to call them by their first names now!
Retinal screening.
A huge focus right now is to get an ERG under anesthesia for Colin. What is ERG? ElectroRetinalGram: VIEW MORE DETAILS ON WIKIPEDIA ABOUT THIS The eye Dr once again reiterated that she is completely baffled by this light vision problem he's experiencing. Briefly, I reminded her of the vision problems he's been experiencing such as where you're eye would go small in the iris, it goes completely wide in direct sunlight and visa versa. I'm going to capture these problems on camera to offer her examples of what exactly we've been dealing with for almost 4 years now. She has discussed Cone deficiency in the retina, however, there is certain criteria and situations which does not prove this possibility. Of course, for some one who has pulled out Stickler Syndrome out of her hat where as other Dr's and other eye Dr's give us a shrug each visit..gives us no doubt in her abilities to determine an answer to this situation. With that said, within the period of a few weeks we're going to be completing a follow up exam with the Eye Geneticist to over see our current Eye Dr's exam on Colin to measure his eyes once again to see if there is anything they might of missed, and to see if the Eye Geneticist can reveal anything new related to the Retina since he/she specializes in this. They will additionally get a base image for Colin's retina to keep an eye over in the case of any additional changes might arise.
Relief to have people taking us seriously.
After years of feeling hopeless we've finally created a full medical support system. Perhaps those years were just intended to create some sense of normalcy within our insanity of trying to get ahead in life with careers and recovering from crashing careers from rough economic times. However, going forward we demand answers after feeling so helpless for years and it's so refreshing to hear the eager voice the Eye Dr had on the phone with me today. You could tell her well educated mind just spinning with idea's and eager to help us progress answers further. That, is exactly the person I want to handle my sons care! Proactive, no reactive.
This is something we haven't had, but have been seeking within our free time [ha..when is..?] and admittedly has been difficult to juggle between all the rest of our daily schedules to juggle over the years. After asking around at Conners new school we had excellent feedback to this Pediatrician in particular who diagnosed this ladies daughter just by seeing her in person immediately called to have a lump on her neck surgically worked on when they were only there for an annual check up. Later, the Dr' among one other specialist the lady claims to have told her that if she hadn't gotten that surgery the day of her node would of burst creating more problems than was needed down the road. We heard 3 other ladies dish about how amazing this Dr was so hands down we switch all of the boys over into his care. It was appearance with the Dr' appointment Logan had with him that he treated the kids with respect as individuals and not just 'another task' to complete. Walking in to greet him like a Dr would with my own exam! It was amazing accomplishment to finally have the kids in good hands.
Lots more details to discuss or write about. But for now that is the main thing is the ERG about to be scheduled. I can't explain how helpless we feel right now. It's great getting answers but I do wish I could just switch my vision with his so he could see better than I. It takes a lot to get my down and to be a negative person, but this is definitely a trying time. We're just taking it one day at a time. However, after years of being told he's okay but to get home and have enough light enter the room with his eyes only to check out as we call back to hear the same "It's probably just his quirk, nothing appears to be wrong with a basic eye exam".
Many people always questioning it and asking us numerous times why we don't have answers..constantly..as if we haven't been already trying with many people to get answers only to not get anything but "he's okay, it's just his quirk." He's not okay! He was never okay since a baby! We know that. They tell you to talk to the kids Dr, we did, and got no where. We talked to many eye Dr's and no one wanted to put glasses on a toddler or baby. What is wrong with people who think this way? See those kids every week if you need, help them out! Get kids their glasses, they need them to prevent problems and to get the gift of vision!!! I want Colin to see as much as he can right now, which means he can play on the iPad for hours since it's one of the few things that caters to his vision but also allows him to repetitively educate himself while also making images larger for him to see better with this iPad vs. other tablets out there.
Years later, hearing the numbers on his exact vision being 20/250 with out glasses at the stage 3 with -9 & -8 eye glass prescription..which means he's so low vision that beyond that 20/200 we've found is the cusp for legally blind and glasses do very little with the point of no surgeries will ever correct this type of vision. With glasses, he is 20/150 which is still Visually impaired, however, 50 away from Legally blind with glasses. Break that down further to him only seeing 1 inch field of vision with out glasses, with his glasses he's lucky if he can see 10 feet right now. With light involve...I am confident as is the Eye Dr validated...he can not see at all. It's like his eyes check out entirely. With that said, we are grieving this information for the sake of our poor son. It does make us feel so helpless. It's a shock, and something new to go through the motions of dealing with. We've had people concerned but also who remind us to not make him feel less of a person. Never will that be our intentions, but we're also grieving this new info. Reality, that we've always known deep down, has come to surface for us. It's okay for us to feel this way.
Our goal is to make him as independent and self sufficient as possible despite it all. In this situation, I'm reminded by this lady with Down Syndrome who had come into the shoe department to buy a pair of shoes from me. She had come in knowing exactly what she wanted since she had a pair already on her own feet. By an estimate, she most likely was in her 40's. She wanted a pair of shoes that are a popular custom brand that never goes on sale. However, she was determined to not leave until I gave her even $5 off or even 10% off of those shoes. She had told me this..and I haven't forgotten it: "My parents taught me to grow up to live by myself and to always negotiate and if people don't negotiate with you, don't buy or do anything with them..always find a deal so you can save your money. She told me one day that she wouldn't be around to do this for me, so she had me do this as a child and I still do it. So either you give me the deal, or I go walking out to get these shoes from some one else with even $5 off!" Wow. How could you say no to that?
That gave me a great perspective in sales for the future. Never take no for an answer, and always try to get that yes no matter what. If you don't, no one else is going to do it for you. I went immediately back into the back to ask my manager an approval of even a $5 discount on these special shoes for this bright lady. I gave her the brief, she disputed until she met this client at the counter. "go ahead and take her $5 off" was the final word. But the lesson learned from this example is prices less. That lady no longer had her parents around for years but she still lived the legacy her parents had laid down for her. What an inspiration! Her parents I'm sure are proud of her. This is the type of legacy I'd love to lay down for any of my boys. Guidance, like a life coach. They don't owe me a thing in return. Watching their successes in life or even occasional failures which happen are enough to know I did good as a parent!
Once again, my apoligies for most likely poor spelling as I'm just in a rush and don't really want to edit the whole blog at this time. It's rough around the edges, so hope you can read through the imperfections.
Vision and Phone tag.
We've been playing phone tag with the Neuro-Ophthalmologist since last week to discuss what's the next steps with Colin's vision care. Today at the grocery store I had to juggle this phone call between that blissful one hour of free child care you can get while you shop at their store. Oh, how we do count the simple blessings in life! 1 hour free child for us to catch a break is enough of a blessing for us right now. The 2 ladies we always see are amazing with him, and aware of his vision problems in case anything happens which puts us at great ease. With that said..I'm just going to call the Neuro-Ophthalmologist the 'eye Dr' to simplify things.
Many appointments.
There is many aspects that are having to be addressed with this Stickler Syndrome and all that it entails. Not to mention having to find a minimum of 4 specialists just to get the other kids screened. We're not up to close to 10 specialists now. That means, between all of Colin's MANY appointments we'll additionally have 4 appointments for each of our children. My oldest most likely won't need it. But, if they all do still get screened that means we're going to need around 12 appointments just for the other 3 boys, and Colin himself combined with all those will equal 21 specialist [that's counting if only one visit is needed!]. Our Summer is already filling up quickly with the massive amounts of appointments needed. I won't even say the amount of appointments Colin will need to maintain his vision health plus his body as a whole just to manage pain, comfort level, vision health..the list goes on. We'll be getting to know these specialists by first name basis, which we already have started to call them by their first names now!
Retinal screening.
A huge focus right now is to get an ERG under anesthesia for Colin. What is ERG? ElectroRetinalGram: VIEW MORE DETAILS ON WIKIPEDIA ABOUT THIS The eye Dr once again reiterated that she is completely baffled by this light vision problem he's experiencing. Briefly, I reminded her of the vision problems he's been experiencing such as where you're eye would go small in the iris, it goes completely wide in direct sunlight and visa versa. I'm going to capture these problems on camera to offer her examples of what exactly we've been dealing with for almost 4 years now. She has discussed Cone deficiency in the retina, however, there is certain criteria and situations which does not prove this possibility. Of course, for some one who has pulled out Stickler Syndrome out of her hat where as other Dr's and other eye Dr's give us a shrug each visit..gives us no doubt in her abilities to determine an answer to this situation. With that said, within the period of a few weeks we're going to be completing a follow up exam with the Eye Geneticist to over see our current Eye Dr's exam on Colin to measure his eyes once again to see if there is anything they might of missed, and to see if the Eye Geneticist can reveal anything new related to the Retina since he/she specializes in this. They will additionally get a base image for Colin's retina to keep an eye over in the case of any additional changes might arise.
Relief to have people taking us seriously.
After years of feeling hopeless we've finally created a full medical support system. Perhaps those years were just intended to create some sense of normalcy within our insanity of trying to get ahead in life with careers and recovering from crashing careers from rough economic times. However, going forward we demand answers after feeling so helpless for years and it's so refreshing to hear the eager voice the Eye Dr had on the phone with me today. You could tell her well educated mind just spinning with idea's and eager to help us progress answers further. That, is exactly the person I want to handle my sons care! Proactive, no reactive.
This is something we haven't had, but have been seeking within our free time [ha..when is..?] and admittedly has been difficult to juggle between all the rest of our daily schedules to juggle over the years. After asking around at Conners new school we had excellent feedback to this Pediatrician in particular who diagnosed this ladies daughter just by seeing her in person immediately called to have a lump on her neck surgically worked on when they were only there for an annual check up. Later, the Dr' among one other specialist the lady claims to have told her that if she hadn't gotten that surgery the day of her node would of burst creating more problems than was needed down the road. We heard 3 other ladies dish about how amazing this Dr was so hands down we switch all of the boys over into his care. It was appearance with the Dr' appointment Logan had with him that he treated the kids with respect as individuals and not just 'another task' to complete. Walking in to greet him like a Dr would with my own exam! It was amazing accomplishment to finally have the kids in good hands.
Lots more details to discuss or write about. But for now that is the main thing is the ERG about to be scheduled. I can't explain how helpless we feel right now. It's great getting answers but I do wish I could just switch my vision with his so he could see better than I. It takes a lot to get my down and to be a negative person, but this is definitely a trying time. We're just taking it one day at a time. However, after years of being told he's okay but to get home and have enough light enter the room with his eyes only to check out as we call back to hear the same "It's probably just his quirk, nothing appears to be wrong with a basic eye exam".
Many people always questioning it and asking us numerous times why we don't have answers..constantly..as if we haven't been already trying with many people to get answers only to not get anything but "he's okay, it's just his quirk." He's not okay! He was never okay since a baby! We know that. They tell you to talk to the kids Dr, we did, and got no where. We talked to many eye Dr's and no one wanted to put glasses on a toddler or baby. What is wrong with people who think this way? See those kids every week if you need, help them out! Get kids their glasses, they need them to prevent problems and to get the gift of vision!!! I want Colin to see as much as he can right now, which means he can play on the iPad for hours since it's one of the few things that caters to his vision but also allows him to repetitively educate himself while also making images larger for him to see better with this iPad vs. other tablets out there.
Years later, hearing the numbers on his exact vision being 20/250 with out glasses at the stage 3 with -9 & -8 eye glass prescription..which means he's so low vision that beyond that 20/200 we've found is the cusp for legally blind and glasses do very little with the point of no surgeries will ever correct this type of vision. With glasses, he is 20/150 which is still Visually impaired, however, 50 away from Legally blind with glasses. Break that down further to him only seeing 1 inch field of vision with out glasses, with his glasses he's lucky if he can see 10 feet right now. With light involve...I am confident as is the Eye Dr validated...he can not see at all. It's like his eyes check out entirely. With that said, we are grieving this information for the sake of our poor son. It does make us feel so helpless. It's a shock, and something new to go through the motions of dealing with. We've had people concerned but also who remind us to not make him feel less of a person. Never will that be our intentions, but we're also grieving this new info. Reality, that we've always known deep down, has come to surface for us. It's okay for us to feel this way.
Our goal is to make him as independent and self sufficient as possible despite it all. In this situation, I'm reminded by this lady with Down Syndrome who had come into the shoe department to buy a pair of shoes from me. She had come in knowing exactly what she wanted since she had a pair already on her own feet. By an estimate, she most likely was in her 40's. She wanted a pair of shoes that are a popular custom brand that never goes on sale. However, she was determined to not leave until I gave her even $5 off or even 10% off of those shoes. She had told me this..and I haven't forgotten it: "My parents taught me to grow up to live by myself and to always negotiate and if people don't negotiate with you, don't buy or do anything with them..always find a deal so you can save your money. She told me one day that she wouldn't be around to do this for me, so she had me do this as a child and I still do it. So either you give me the deal, or I go walking out to get these shoes from some one else with even $5 off!" Wow. How could you say no to that?
That gave me a great perspective in sales for the future. Never take no for an answer, and always try to get that yes no matter what. If you don't, no one else is going to do it for you. I went immediately back into the back to ask my manager an approval of even a $5 discount on these special shoes for this bright lady. I gave her the brief, she disputed until she met this client at the counter. "go ahead and take her $5 off" was the final word. But the lesson learned from this example is prices less. That lady no longer had her parents around for years but she still lived the legacy her parents had laid down for her. What an inspiration! Her parents I'm sure are proud of her. This is the type of legacy I'd love to lay down for any of my boys. Guidance, like a life coach. They don't owe me a thing in return. Watching their successes in life or even occasional failures which happen are enough to know I did good as a parent!
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