The way Makkyle sees the World
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hi thankyou for your time. this is my son makkyle he moowas born three years ago with bilateral anophthalmia(born with out eyes),cerybal palsy, and now at three a g-tube we r trying to raise money for my son to support himm and to go to a confrence in orlando,fl to learn more about his condition please help us raise money.
thank you in being interested in our family I am waiting for the doctor to send back the form this week should get it in the mail.
so first I will introduce our whole family I am Marion Masek and my husband is Miguel Mendez we have an amazingly smart daughter Makala Mendez that is 7 that wants to be a geologist and work with really cool rocks (for now). my son witch is the disabled one is Makkyle Mendez.
During my pregnancy with Makkyle I had no proof of something was wrong with Makkyle. I at around 5months started getting headaches and just a mothers intuition concerned I was going to loose the baby. was telling my doctor something was wrong but ultrasound showed that nothing was wrong so on December 17, 2010 at 6am. I was scheduled to have a C-section do to my previous C-section. C-section went well he even gave the doctor a nice shower coming in to the world. they took him to check him out to make sure everything was all right upon doing so his eyes were swollen shut so they told us that he just needed to sit him up to let the swelling come down . so the first day of his life he was mostly out of the room and in to the nursery. we they check all of his tear duct all his organs and found he had a micro penis, they thought he had a heart and liver problem, and they could not get his eyes to open. we were delivered at a small hospital so several pediatricians came to see him I believe we had 5 pediatricians look at him. they wanted to transfer him to another hospital that after noon. But they would not release or transfer me with him that day. so we decided as a family to leave him with us was the best decision at the time for our family. he was not in a life threatening situation. so they first told us they didn't know anything was wrong do to the swelling of the eyes, then they told us he had charge syndrome, then they told us that was wrong and wanted to transfer us to a larger hospital. we had our choices and went with Loyola in Chicago area. we had family near by and the Ronald McDonald house right next to it.
so the doctors had him transferred the following day. them once we were at Loyola witch was a roller coaster all ready. we were then seen by pretty much every doctor heart ,liver, back , genealogist and several more. we had blood drawn and they told us he has bilateral anophthalmia (which means no eyes in either side). they told us it is a mutation of the gene that is carried buy one of the parents. we were never tested to see who caries it because we don't want to know or care who it was. we were in nicu for 5 days in that time they did Mri's, scanned his back to check because he has a dimple in his back area they thought might of had a whole ,scanned his heart and liver to make sure that functioning well with no defects. that was a supper emotional time my husband had to leave me at the hospital and go back to work after 2 days of being there. so we finally got to go home the day before Christmas eve which I host Christmas eve at my house every year.
so we were in contact with many doctors which several of them I had to go to weekly which many were up by Loyola which is over 2 hours with out traffic to get to. we would see an eye prosthetic doctor. which would make Makkyle look like he had teeth coming out of his eyes. we also had black ones at Halloween (that was fun). so we would see a hormone doctor she is the one that told us Makkyle has not enough testosterone that is why he had the micro penis. he went threw three rounds of testosterone shots which means he will have to take testosterone for the rest of his life when he hits puberty. we also at this time have found that for 6 months he did not gain weight. we have to see nutritionist and gastro doctor . as the results of that my son can eat anything we can have him eat and also be strictly on pediasure for drinks and as much as we can get him to drink.we see many therapist vision , physical therapist at first he was very delayed physically at this time.
at this time he is about 1 years old.
so at this time in addition to the many therapies he already getting. which at this time he was not siting on his own yet. we discovered he was having a hard time eating so we looked into him being tounge tied we did have his tounge un tied at this time. he started using a Sippy cup at this time but we found he didn't like it because he had to lay his head back so instead he would lay his head to the side. he was still not yet sitting on his own he was starting to roll around a little but not much crawling was happing . we were still going to the prosthetic doctor every other week for expansions at this time. during this year though we decided that he need to see an eye surgeon. we went to see the eye surgeon at this time to find out if we should continue with the conformers or if we should use something called hydrogels. (hydrogels are balls or semi circles that r like the kids toys that grow with water.) they expand the whole socket not just the eye bone like the conformer. we also know have to decided if with this hydrogel if we want to do a fat graph into the eye to fill the eye socket. so we had another mri of the eye sockets. we found out also at this time that his eye lids were to small because we went about 2 months of glueing the eyes shut to hold the hydrogels in place to the eye till it expands. but in that time before we would even get home it would pop out do to the eye lids being to small. so we know had to make the decision to stich the eye lids closed to help them stay in. we decided as parents we need to make him look as normal as possibly to give him the best chance in life at no bullying or being looked at differently because he looks different. so we did the surgery's to have them stitched in. the stiches would pop out we would have to see him in some pain but with as much pain he was enduring he keeps a smiling face on. we did that about 9 times . we then had enough space after a year of hydrogels to do the fat graph. they took the fat from his but and put it in his eye. ( he know has a scar he can tell some cool store about on his butt. they placed it in his eyes and put conformers in on top and had to stitch those closed for awhile till the fat graphs were healed in place but we think we made the right decision because he is not as sick any more after that and he is having better facial structural growth in his face. during this as well we are still having concern with his feeding. we had to wait 5 months to be seen buy a feeding and speech therapist.
he now has turned 2 years old.
so he now is two we are looking at his speech and feedings. he is not talking well and having problems with his speech.so we were sent by or feeding /speech therapist to have a cookie test. following the results of the cookie test we are having to thicken all liquids to honey consistency. no food that excretes liquids. so now for this year we keep chugging along with having conformers placed in eyes about ever two months. also working on getting him to speak which is not that easy . and working on walking. we had to get a wheel chair, gait trainer, and a bath chair to safely be able to move and give him baths safely. so year two we thought it would be an easy year but then threw the end of the year we had more cookie test not passing or gaining any ground. we did start to move from a gait trainer to the walker so progress and we also were getting cruzzing in on the couch so much of major improvements to his walking. so at the end of this year we had to prepare for school.
he now is turning 3 years old.
at the beginning of this year we just got back from a vacation visiting grandparents. we were know prepared for him to go to school full time three days a week. the school was not providing a disabled three year old a monitor on an hour bus ride. we now had to fight the school to get what was placed in his IEP. so once that was taken care of we know had another cookie test at the end of march on a Friday at 3pm. I went for our normal cookie test which usually take 15 mins. they tested him on his liquids like usual they test 4oz of liquid to honey consistency which he failed again for the third time so they then tested him on 3oz of honey consistency which is about as low as you can go before it is so thick you r eating it. he failed that as well with deep aspirations in to the lungs. they then called my GI doctor and told me to go down to admitting and wait.so went down stairs not knowing what was going to happen to us except we probably are having to be admitted to the hospital. so we were admitted with in the hour of the test results. we then had to ng-tube him threw the weekend threw his nose. which he repeatedly pulled them out threw the weekend and had to reinserted into the nose. on Monday we went for another cookie test to make sure that solids were not going to be an issue. so we now r going into Tuesday and r being told our only option is to have another surgery to have a g-tube placed and we r also going to have nissen placed on the top of his belly because previous upper scopes of his belly at one years old had shown signs of acid reflux. so we were there 10 days in the hospital do to small complications of the surgery. then when we went home we were now only aloud to feed him pedisure threw the g-tube nothing buy mouth. I felt so bad taking it all away. then after a few weeks he was retching (dry heaving) constantly day and night to the point he was choking on any secretions that would come in to his mouth. so I called the doctor they said come and we will have to admit him for observation. we stayed 6 days this trip the surgery team did all of there tests to make sure that the g-tube was working properly and that his stomach was emptying correctly. they found nothing . they were going to send us home with him still retching I had to say no you need to send my GI doctor to see us then before u send me home they proscribed us a medication that actually also not only helped with his retching it also helped out with his cerebral palsy symptoms. so we finally go the reaching under control. so he started swimming therapy in the summer. we also have worked on his feeding but he still can not have liquids. this last July we had a seizure. so we r trying to figure out why he had a seizure so we had a EEG test done of the brain it showed abnormality's of the back of his brain. we decided not to put him on seizure meds do to it was his first seizure we know of. we were scheduled for an mri got results of some other abnormalities of his brain. so we r waiting to better talk to the decider about the abnormalities they found in the brain we also have had Botox done to his legs to help him walk better we have seen good improvement of this walking. A couple of good thing happened this month we found peach's neet feet , we got his first smart brailler, and we also got his first cane. t
that is pretty much were we r in life it always is a new path and struggle to deal with. but he keeps smiling and determined to be happy and thrive the way he is so happy
here is a link for us to share as well we have made to try and raise money too.
http://www.gofundme.com/makkyles-fight
thank you in being interested in our family I am waiting for the doctor to send back the form this week should get it in the mail.
so first I will introduce our whole family I am Marion Masek and my husband is Miguel Mendez we have an amazingly smart daughter Makala Mendez that is 7 that wants to be a geologist and work with really cool rocks (for now). my son witch is the disabled one is Makkyle Mendez.
During my pregnancy with Makkyle I had no proof of something was wrong with Makkyle. I at around 5months started getting headaches and just a mothers intuition concerned I was going to loose the baby. was telling my doctor something was wrong but ultrasound showed that nothing was wrong so on December 17, 2010 at 6am. I was scheduled to have a C-section do to my previous C-section. C-section went well he even gave the doctor a nice shower coming in to the world. they took him to check him out to make sure everything was all right upon doing so his eyes were swollen shut so they told us that he just needed to sit him up to let the swelling come down . so the first day of his life he was mostly out of the room and in to the nursery. we they check all of his tear duct all his organs and found he had a micro penis, they thought he had a heart and liver problem, and they could not get his eyes to open. we were delivered at a small hospital so several pediatricians came to see him I believe we had 5 pediatricians look at him. they wanted to transfer him to another hospital that after noon. But they would not release or transfer me with him that day. so we decided as a family to leave him with us was the best decision at the time for our family. he was not in a life threatening situation. so they first told us they didn't know anything was wrong do to the swelling of the eyes, then they told us he had charge syndrome, then they told us that was wrong and wanted to transfer us to a larger hospital. we had our choices and went with Loyola in Chicago area. we had family near by and the Ronald McDonald house right next to it.
so the doctors had him transferred the following day. them once we were at Loyola witch was a roller coaster all ready. we were then seen by pretty much every doctor heart ,liver, back , genealogist and several more. we had blood drawn and they told us he has bilateral anophthalmia (which means no eyes in either side). they told us it is a mutation of the gene that is carried buy one of the parents. we were never tested to see who caries it because we don't want to know or care who it was. we were in nicu for 5 days in that time they did Mri's, scanned his back to check because he has a dimple in his back area they thought might of had a whole ,scanned his heart and liver to make sure that functioning well with no defects. that was a supper emotional time my husband had to leave me at the hospital and go back to work after 2 days of being there. so we finally got to go home the day before Christmas eve which I host Christmas eve at my house every year.
so we were in contact with many doctors which several of them I had to go to weekly which many were up by Loyola which is over 2 hours with out traffic to get to. we would see an eye prosthetic doctor. which would make Makkyle look like he had teeth coming out of his eyes. we also had black ones at Halloween (that was fun). so we would see a hormone doctor she is the one that told us Makkyle has not enough testosterone that is why he had the micro penis. he went threw three rounds of testosterone shots which means he will have to take testosterone for the rest of his life when he hits puberty. we also at this time have found that for 6 months he did not gain weight. we have to see nutritionist and gastro doctor . as the results of that my son can eat anything we can have him eat and also be strictly on pediasure for drinks and as much as we can get him to drink.we see many therapist vision , physical therapist at first he was very delayed physically at this time.
at this time he is about 1 years old.
so at this time in addition to the many therapies he already getting. which at this time he was not siting on his own yet. we discovered he was having a hard time eating so we looked into him being tounge tied we did have his tounge un tied at this time. he started using a Sippy cup at this time but we found he didn't like it because he had to lay his head back so instead he would lay his head to the side. he was still not yet sitting on his own he was starting to roll around a little but not much crawling was happing . we were still going to the prosthetic doctor every other week for expansions at this time. during this year though we decided that he need to see an eye surgeon. we went to see the eye surgeon at this time to find out if we should continue with the conformers or if we should use something called hydrogels. (hydrogels are balls or semi circles that r like the kids toys that grow with water.) they expand the whole socket not just the eye bone like the conformer. we also know have to decided if with this hydrogel if we want to do a fat graph into the eye to fill the eye socket. so we had another mri of the eye sockets. we found out also at this time that his eye lids were to small because we went about 2 months of glueing the eyes shut to hold the hydrogels in place to the eye till it expands. but in that time before we would even get home it would pop out do to the eye lids being to small. so we know had to make the decision to stich the eye lids closed to help them stay in. we decided as parents we need to make him look as normal as possibly to give him the best chance in life at no bullying or being looked at differently because he looks different. so we did the surgery's to have them stitched in. the stiches would pop out we would have to see him in some pain but with as much pain he was enduring he keeps a smiling face on. we did that about 9 times . we then had enough space after a year of hydrogels to do the fat graph. they took the fat from his but and put it in his eye. ( he know has a scar he can tell some cool store about on his butt. they placed it in his eyes and put conformers in on top and had to stitch those closed for awhile till the fat graphs were healed in place but we think we made the right decision because he is not as sick any more after that and he is having better facial structural growth in his face. during this as well we are still having concern with his feeding. we had to wait 5 months to be seen buy a feeding and speech therapist.
he now has turned 2 years old.
so he now is two we are looking at his speech and feedings. he is not talking well and having problems with his speech.so we were sent by or feeding /speech therapist to have a cookie test. following the results of the cookie test we are having to thicken all liquids to honey consistency. no food that excretes liquids. so now for this year we keep chugging along with having conformers placed in eyes about ever two months. also working on getting him to speak which is not that easy . and working on walking. we had to get a wheel chair, gait trainer, and a bath chair to safely be able to move and give him baths safely. so year two we thought it would be an easy year but then threw the end of the year we had more cookie test not passing or gaining any ground. we did start to move from a gait trainer to the walker so progress and we also were getting cruzzing in on the couch so much of major improvements to his walking. so at the end of this year we had to prepare for school.
he now is turning 3 years old.
at the beginning of this year we just got back from a vacation visiting grandparents. we were know prepared for him to go to school full time three days a week. the school was not providing a disabled three year old a monitor on an hour bus ride. we now had to fight the school to get what was placed in his IEP. so once that was taken care of we know had another cookie test at the end of march on a Friday at 3pm. I went for our normal cookie test which usually take 15 mins. they tested him on his liquids like usual they test 4oz of liquid to honey consistency which he failed again for the third time so they then tested him on 3oz of honey consistency which is about as low as you can go before it is so thick you r eating it. he failed that as well with deep aspirations in to the lungs. they then called my GI doctor and told me to go down to admitting and wait.so went down stairs not knowing what was going to happen to us except we probably are having to be admitted to the hospital. so we were admitted with in the hour of the test results. we then had to ng-tube him threw the weekend threw his nose. which he repeatedly pulled them out threw the weekend and had to reinserted into the nose. on Monday we went for another cookie test to make sure that solids were not going to be an issue. so we now r going into Tuesday and r being told our only option is to have another surgery to have a g-tube placed and we r also going to have nissen placed on the top of his belly because previous upper scopes of his belly at one years old had shown signs of acid reflux. so we were there 10 days in the hospital do to small complications of the surgery. then when we went home we were now only aloud to feed him pedisure threw the g-tube nothing buy mouth. I felt so bad taking it all away. then after a few weeks he was retching (dry heaving) constantly day and night to the point he was choking on any secretions that would come in to his mouth. so I called the doctor they said come and we will have to admit him for observation. we stayed 6 days this trip the surgery team did all of there tests to make sure that the g-tube was working properly and that his stomach was emptying correctly. they found nothing . they were going to send us home with him still retching I had to say no you need to send my GI doctor to see us then before u send me home they proscribed us a medication that actually also not only helped with his retching it also helped out with his cerebral palsy symptoms. so we finally go the reaching under control. so he started swimming therapy in the summer. we also have worked on his feeding but he still can not have liquids. this last July we had a seizure. so we r trying to figure out why he had a seizure so we had a EEG test done of the brain it showed abnormality's of the back of his brain. we decided not to put him on seizure meds do to it was his first seizure we know of. we were scheduled for an mri got results of some other abnormalities of his brain. so we r waiting to better talk to the decider about the abnormalities they found in the brain we also have had Botox done to his legs to help him walk better we have seen good improvement of this walking. A couple of good thing happened this month we found peach's neet feet , we got his first smart brailler, and we also got his first cane. t
that is pretty much were we r in life it always is a new path and struggle to deal with. but he keeps smiling and determined to be happy and thrive the way he is so happy
here is a link for us to share as well we have made to try and raise money too.
http://www.gofundme.com/makkyles-fight
Organizer
Marion Masek
Organizer
Minonk, IL
