April 27, 2013-I'm sorry that I had to back track and post multiple status' at once again. I had strep throat the day before the trip, we were out of town for a day, both kids were at the doctors for strep throat and pink eye the following day, and then we've been working hard on the Reach for a Difference booth for the Walk Now for Autism Speaks! I felt so bad for the boys being so sick and miserable, esp Destin. He was teething, had diarrea, had a fever, had pink eye, and had strep=[ With a whole lot of amoxicillin and eye drops, they boys were great 2 days later!
As far as the walk goes, it was awesome! It came together great and we had a superb turn out. It was a wonderful experience and I can't wait for our next fun adventure with this group!!
April 23, 2013-We were packed up, and on the road, headed to Fort Worth 3 hours away for an appointment with the Child Studies Center. I was full of emotions, knowing today was the day we could finally have answers. I decided to check my voicemail in the truck, and thank goodness that i did! I found I had a voicemail from the night before (missed the call bc i was bed ridden with strep=/) saying there was a problem with our insurance, for todays appointment! Great notice sweetheart. I called to question it and the receptionist claims she had been in contact with tricare all week and that our authorization and referral were still in pending status. Again with the 10 automated voice options and 3 humans later (every stinking time!) someone from tricare claims its already approved! So now im thrilled, then angry for getting worked up for nothing, and yet questioning why i have to go through this process and do someone elses job. So i connect tricare with the office on a 3 way, explain the situation and make sure everything is sent. I then had to cross my fingers and hope it was received in those 2 1/2 hours left on the drive. And guess what, it was received! PTL! And so...we got our evaluation done=]
-Our biggest appointment yet! Child study center of Fort Worth. I can't even begin to tell you how impressed i was. They were quick, they were caring, they were amazing, and truly cared! Dr. Fraterelli was awesome!! She did every trick to make Kai laugh while she examined him, she made sure he was comfortable. I wish all docs took the time to do this so every appt wasn't pure melt down. She asked every question possible, questions i'd never heard so i didn't know how to answer. And she even did a complete, full body exam to make sure she covered every base and every question. She actually read all of his records and called his doctors. She put thought into everything we've every been through with kai from birth to today. She said she could do more tests or sit down with a team, but she didn't feel the need. There was no doubt in her mind and now we have it on paper. Malakai has been diagnosed with autism. We've known and lived a life style based on the presumption of this for a year, so you could say we weren't shocked and were prepared. I thought. Hearing the words and seeing it written on paper made it so real. I was emotional the whole way home. I think i still had a glimmer of hope that some level was off and it was treatable or something, but thats not the case. They have no cause and they have no cure. It seems so final and so life long. It's scary and every parent wants better for their child. It doesn't change the way we feel, the way we treat him, the therapies we do, it just means now that we have a validation and we know and can prepare for a life of extra work. It is great that we have it on paper now though. This means we can make some insurance changes, get ABA (behavioral therapy) and start up equine therapy for real this time!! I couldn't be more psyched for these 2 new therapies and have heard so many stories of children becoming totally different people within weeks of these programs. I can't wait, and I hope he truly enjoys, learns, and continues to grow and make great strides with his new outlets=] ♥
April 22, 2013-Day 1 of 3* major days for our family! We got our neuropsych exam done with Kai=]] It was def a long wait and grueling process, but i couldn't be happier reaching this point. The psychologist was wonderful, very interested in us (not just going through the motions of a job) and paid a lot of attention to Kai. He truly listened when I explained behaviors he normally does but wasn't doing and when he was doing things i havent seen before. He told me he highly suspects autism and would go over all of his finding, test scores, and copies of records that I brought, with his team. We meet back in two weeks to go over those results!
-I got the call with both boys gastro results. Both of their tests aren't showing any food allergies! Yay! The concern with kai at this point is his weight/height/growth chart situation. With him being a picky eater and having eating issues, we've tried a lot of things to pump more calories into him. The results on his protein level test showed that they are low. Poor boy isnt getting enough protein. The dietician and i talked about options and how we are doing literally everything we can that she was offering, and have been for a year. The fact that kai is on pediasure means he is being given at least the daily recommended amount of protein. That being said, his levels should not be low. This brings very new concerns to the doctor and that team will be discussing and getting back with me. This is something I am def worried about=[ The results for destin being negative to allergies was great. However, this means our constipation and throwing up and such is being caused by some other issue. The doctors decided it would be best to have him put under. They will run a scope through his upper section and do some small biopsies. They will also have a tube (with a camera or sensor or something on it) up his nose measuring levels. This will stay in 24 hours, but we wont be in the hospital that long. Scheduling will get with me this week and a social worker will find somewhere for us to stay. We will be trained in how to handle the tube and what to do with it and be sent to our room until its removed the following day. I sure hope they have some reallyyyy good ideas on how to keep a strong willed 19 month old from tearing an uncomfortable tube out of his nose!!!! Can you say sleepness night? My poor babies=[
-Malakai has such a love for music. Countless times he has dropped what he was doing because he heard music somewhere. This week, he threw his toy, came running to the living room, and stood there looking up at the tv while dancing. All because the free credit score commercial was on. Apparently that goofy guy with the guitar is a huge hit for him! ♥
April 20, 2013- Sooo much to update. First off, Kai was put on an appetite stimulant, we started two days ago, and he still isn't eating=/ We'll give it a full week before we switch. Destin is now up to, teething tablets, melatonin, allergy medicine, stool softener, and eye drops. Poor, poor baby. He has allergies, constipation, an eye infection, all while teething. Tonight we tried some new bath techniques since both boys have recently become terrified of the water (i'll update kai's page "Miracles for Malakai" on the techniques) While in the tub Destin had a blowout. I mean, poop everyyyy where. So after cleaning him up, cleaning the tub, refilling that and noticing we missed some after it was all over the bed i laid him on to change him, we finished up bath time. Then during our bedtime routine, he projectile vomited, all.over.me. And by all over me, I do mean i'm chilling in my tshirt and undies and he puked down my legs so i had bottoms full of puke.
-New bath techniques~ We've been struggling with the boys with their baths a lot lately. They used to love it, then would play and that's it, now they get in and don't move, like they are panicked the water is touching them. We've tried bathing them separately, using toys, bubbles, music playing and even tried foam shapes to stick to the walls. ECI recommended a few things also. One was to try out letting them use the hand held shower head. Horrible, horrible idea. They panicked so bad, Kai couldnt breathe and I haven't been able to even get them in the bathroom for days. Today, we tried bathing them in the master bathroom. Instead of using the whole tub, we used a bin. A plastic bin, like a laundry basket, but without holes. We only filled it a few inches, and used soapy, bubbly water. We also used wet towels. I placed 4 small towels in the bin, so that they would feel more enclosed and safe. I loved this because I was also able to use one of the towels to place around their shoulders. This acted like a weighted and compression vest, got them wet without us washing them, and kept them warm since they won't get in the water. We also tried using an empty water bottle. Kai wasn't having it, but Destin enjoyed watching Daddy fill up the bottle, loved the bubbles it made, and liked watching him hold it high and pour it out. He even tried grabbing at the falling stream of water. It was a great start!!! Hopefully a few weeks of this and they'll be back in the tub playing and washing up!!
April 18, 2013- We spent the day in Dallas, again. Third time this month:p Both boys had a gastrointestinal appt. Kai's growth is still a little bit of an issue so we'll try an appetite stimulant to get him to eat more. Destins constipation is an issue, esp BC he is getting backed up and getting sick so we'll try a Med for that. Both boys also had some blood work and will be checked for food allergies, esp with our lactose and gluten issues. Results in one week.
April 14, 2013- This will be a bunch of posts that cover the past 2 weeks, no real dates, just updates=]]
-Last week Kai had a pretty rough week at therapy. He really didn't want to work, and got very upset if we passed the gym on our way to speech. He likes the gym so much, so walking past it without entering is such a tease! He did do well in food therapy. This week he missed a day due to illness and another day due to his therapist being out but he did great on friday and was superb in food school!! I'll post some photo updates on the therapies later=]]
-Public Outings=Awful. Just plain awful. Now i'm sure it could be worse..ok, maybe not. Lets just say they are no more. I can't take it anymore, nor can my husband. If we enter a restaurant, the boys eat the bread right away, then are full, and when we get our meal, they are done and ready to go. In grocery stores, they get made if they are seated near each other in the cart and if they aren't snacking through the whole store they are screaming. If we are window shopping, kai usually sits nicely but Destin is so angry. He will not sit with his brother. He doesn't like to sit in the basket (and if he does it's to throw out all of our items, if heis walking he doesn't want to hold hands, he is only happy if he if free, off, and touching everything on the shelves. And if it is a place like lowes that has fans all over their ceiling, kai is flipping out the entire time. We've discovered we can't really go anywhere with them. ECI may be stepping in to help at this point but i'm not sure yet. In the mean time i've been given ideas to take lots of comforts and toys along, allow them to snack, and to put together behavior books to prep them on how to behave before we even leave. We'll see what happens with this, i'll update as it comes. But i wont be ready for any shopping trips anytime soon.
-I don't remember what i've updated and what i havent so heres a run down on Kai's braces. We had gone in and they told me i needed a prescription. So i had to reschedule another appointment for a fitting. In the mean time we had to see a pedi-ortho and get second opinions on which braces to use. We did and so we set up an appointment for a fitting. Daddy picked out a cool cars design with blue straps=] It took forever to get the braces in, when they did they couldn't get us in for another week or so. We go in, and they are sooo small. Like a couple inches, look like they belong on an infant. So then they had to re-measure, and re-order. It took another week for that process and then a few days to get us in, and even then, they ordered the wrong color. Neithless to say, after months of ridiculousness, we have braces. They are white, not blue, but hey! We have braces! =]]]]]
-Light It Up Blue was on April 2nd. We did what we could to celebrate=] We bought our Autism Speaks blue light bulbs and placed them out front of the house. We made homemade t-shirts. They were tye dye 4 colors of blue, with light it up blue on the backs. We each wore a puzzle piece drawn on our hands. Mommy had puzzle pieces on her nails, which were blue, blue jewelry, blue makeup, and a blue ribbon in her hair. The ribbon is now on mommy's keys ♥ Pics to be posted later of everyone=]
-I want to truly thank, from the bottom of my heart, the donor who donated 600+ balls to us so that my boys could have a ball pit. It is such a great therapy option, a great addition to our play room, and the boys love it! I'm sure that when we host play dates, those kids will love it too!! Thank you so so much!!!! ♥ (Pics to follow)
-ECI and the Rehab center are currently working together with me, in order to put together a grant list. They will be sending it out to see if we can get some in home equipment for the boys=] We have our fingers crossed on some really great things. We will check with our insurance and wo different foundations, and see what we can get covered. I may not know for another 2 months, so the wait will be awful, but updates will come when required=]]
-The boys, esp Destin, have been having a rough time with their bellies. I know Destin was colic as a baby and then both are lactose intolerant. We had them on lactose free milk, but WIC switched us to soy milk. Ever since, kai refuses the milk almost all the time, and Destin has been spitting up/ getting sick like crazy!! I spoke to their doctor and there are no connections, but they could possibly be lactose intolerant and allergic to soy. They will both be seen by a gastrointerologist out in Fort Worth this week for testing. We will check for gluten intolerance, lactose intolerance, soy allergy, and general allergies. More updates to come Wed when we return home=]]
-The boys had been sick recently and after recovering, Destin has been really constipated. I'm trying to push a lot of water and some juice. He didn't go for 2 days and the third day I gave him corn syrup. He woke up the following day (TMI Alert!) with a large, rock hard lump and i thought we were clear. The following day i changed him about 4 times for just one itty, bitty, rock hard, pebble like passing. Now today he hasn't gone at all again. Tomorrow we may go see the doctor. Fluids,sugars, stretches, and belly rubs aren't working=[[
-Self harm has unfortunately become another problem for our boys=[ We've noticed that Destin wakes up with scratch like wounds on his hands, and i fear he has taken to biting himself when he wakes up. I have also caught him pinching the skin on his chest until his whole chest is cherry red. I can usually stop him without much fuss, but its still scary. Kai has been at his worst lately. While it might not be as bad as some children, it's such a hard thing to watch as a parent, regardless. Kai has taken to hitting himself. Every time he gets upset he has been running, hiding, or hitting. He will smack his stomach, or smack his hand across something, and recently, he started smacking himself in the head. It's heart breaking to watch him whip his head and hand until they crack together, and if he hurts himself, he looks up at us with this awful face and then returns to crying. I want to cry every time, i want to ease my little boys pain. I sure hope someone has some insight on how to deal with these behaviors.
-We were recently out in Dallas, for some genetics testing. The doctor shared my concerns about Kai's constant thirst, lack of eating, hair patches, and tremors. She believes some metabolic testing could provide answers for these issues. We were sent to a lab that we had to drive to. When we arrived, the waiting rooms were all over the place, no confined areas, the boys were nuts! They took Kai's blood, for 4 different tests and taped a bag to him for a urinalysis. He hadn't peed, and they were closing so after an hour of chasing them through all of the waiting rooms,we were set to another building of the hospital to wait in registration. The computer guy, looked at me like i was nuts. I had to remove the bag myself, because there were no nurses. My poor little man flailed every where and i'm sure it hurt like hell, i some how did not spill the bag through his rolling and such. 4 tests should return within 2-4 weeks and another in 4-6 weeks. Updates upon arrival!
-We got to tour Kai's (possible) school this week! As some of you know, he will be starting with a PPCD program at the age of 3,at a school nearby our home. We are super stoked about this, and they were able to give us a tour, let us see his possible classroom, and meet the teacher. Can't wait for the acceptance letter!!! Sometime between mid-april and early may!! Updates to come!
-We took the boys to a "block party" at a nearby youth center this week also. They had tons of games and free food. It was nice to have the boys out in public without being in a building and they seemed to do well. They sort of ate, but really wanted to just run around=] It was a good time, good enough, i didn't capture any photos! oops!
-We had some serious insurance brawls lately! Haha. I had called our pediatrician and asked for a referral to get into "doctor 1". They sent it to tricare, and it was returned for a doctor 2. I was fine with it, but when i called to schedule, doctor 2 has moved to minnesota. So i called tricare and spent 30 minutes with automations and explaining my case until they said they'd try again. Our pedi called with a referral acceptance for doctor 3. Well upon calling to schedule apparently doctor 3 doesn't do the testing we need. So 3 days of calling and hours and hours of arguing and yelling and kindness with Tricare, they finally understand i'm out of options and have to be approved for doctor 1 like i've asked all along. They say it'll take 2 hours and everything should be final. I wait until the following day before calling the doctor and they haven't received anything!!! So back to tricare i go, told my story to 4 different departments and they said it'd be resent. It took another day before it was received, but now, now we have our appointment!!! Kai will finally get in to get a neuropsych eval done this coming week=]]] Couldn't be more thrilled! =]]] (Take that tricare=p)
-We have been having a rough time with the boys in the bath tub. We have always bathed them together and let them play before bathing and all of a sudden, they hate the bathing part. If you get them wet or soapy, or touch them, they are very angry! We received some great tips from therapists! We may try bathing the boys separately, letting them play with the hand held shower, letting them soap themselves, we may try using the glove like wash cloths, and using distractions like bubbles and bath crayons! =]]
March 27, 2013-So, i'd like to rant about my journey last night to find melatonin. Kai has run out, and we went a few weeks without and now he isn't sleeping well and is having an awful week. Between his fan withdrawal (i'll post about later) and no melatonin/sleep, i'm sure this is why he can't handle anything. So I gave in and went to Walmart to get some last night. I chose Walmart because I know for a fact that they carry it. Well they were out. They did have 5mg though so I questioned the pharmacist about it. She agreed that 5mg would be too much and we need to stick to 3mg. She also checked to see if there were any other sleep aids that could help, but theres so many ingredients in everything she was afraid it would harm him. So, i went on to CVS. They found the melatonin for me in the sleep section, and they had 3mg, but it was in a swallowable pill, not dissolvable. How in the world do you teach an autistic 2 year old how to swallow a pill? You don't. Moving on. So then i find the brand i use, in dissolvable, but....5mg. So I ask them if they can get it in. After 10 minutes of research, it isn't even order-able SO, off to Walgreens. Same story, its either a swallowable pill, or 5mg dissolvable. So now i've spent an hour and a half driving around town, seeking out every pharmacist and manager and guess who has no melatonin to take home to their poor child. This girl! Hopefully we'll find it today while we are out shopping.
-In the previous post, I promised that I would talk about our recent fan obsession. Kai has always obsessed over anything that spins. He will find something that spins anywhere, everywhere, and in the most unexpected places. For the past few months, Kai has shown interest in the floor fans at therapy. For a while we redirected him, but for a few weeks, we incorporated it in to therapy. We used it to show him how the wind moves his hair, and blows papers away, and we even got him making noises into it!! I loved it! But then about 2 weeks ago, he found the ceiling fans at home. He would reach for them and whine, loved to be lifted up to spin them and wanted them on. I didn't see why not. Until a few days later. We started noticing that when they weren't on, it caused melt downs. He would wake up and the first thing he wanted before out of his crib was the fan on, he'd flip if it wasn't on, he couldn't sit at the table to eat bc he could see the one in the living room, he'd take us to his room over and over bc of the one in there, and couldn't partake in his bedtime routine. It impaired his daily routine so bad I considered having my husband take them down. Drastic, i know =/ So i talked to his therapists and we all agreed, it has to stop, now that it is impairing. We agreed that every time they are asked for, we redirect him, and they never get turned on. For the first week, it was a melt down every time he asked and was told no or redirected. This week however, is a little better. He only asks a few times a day to have the fans and doesn't flip if redirected, BUT...he flips over everything else. Like i said, it could be due to his lack of sleep this week, but he has had a horrible week. Its like he is going through fan withdrawal! Its horrible=[ I feel so bad but i know this has to be done. One day, when he can better handle it, we'll turn our fans back on. Have any of you ever had anything like this happen with your kids?
-6 stores and 2 days later, we have multiple bottles of melatonin. I don't plan on running out for months=]]] Woohoo!!!
March 26, 2013-Malakai needs a few prayers this week. I'm not sure why, but he's having "one of those" weeks. Everything from a tv not being on, to me handing him a cup is causing massive melt downs that result in him running and hiding and crying. I truly having figured out the common thing in each scenario but i'll continue watching and thinking. Hopefully it'll pass soon. He did have therapy this morning, which was interesting. We had to walk pass the gym to get to speech and Kai lost it. He wanted in the gym and no matter how much I told him we had to go to speech first, he still dropped to the ground in a ball=[ When I finally got him to speech (by caring a squirming crying child in each arm) he did not want to take his jacket off or separate from me. So he spent some of his therapy in my lap, and the rest with his jacket still on. He finally took it off himself as we went to PT. Usually he doesn't do well in PT at all. He doesn't like all the work. So i warned the therapist ahead of time about his mood, and he worked great for her!!! He is always the opposite for her, but it was nice to see him get some therapy considering his mood=]]
-Please help my family raise $1,000 for this wonderful cause! They are the biggest autism advocates in the world, and you have no idea how much they help families just like mine!
March 25, 2013-We met with our speech therapist from ECI again today. We are noticing that a picture board with 5 or so steps of what we are going to work on, isn't really working for Kai. (NOW THAT HE HAS HIS FIRST WORD!!!!!) He SAYS all done to every activity before even starting, just to get to the one he wants. We are going to try to use "Now & Then" cards next week=]
March 24, 2013-Mommy is officially a board member of Reach for a Difference! She is the director of fundraising, codirector of arts and entertainment and a writer! Now she can help so many families just like ours!! ♥
March 23, 2013-ECI Easter Party. This was a hoot=] The boys participated in an easter egg hunt, and by this I mean, helped others. I knew the boys didnt know how to gather the eggs, but wasnt sure what they'd do. Apparently are sharing lessons at home have been a stronge lesson, because the boys would pick up eggs and put them in other kids baskets!!! Oh the joys. The boys tried to have their picture taken with the Easter bunny but like every holiday, this wasn't happening unless mommy and daddy sat there too. Then Kai rode a horse (like a pro!) and we checked out the petting zoo. I never realized just how much these boys love animals! All they wanted to do was sit and pet every animal there. Kai loved the goats and Destin would have brought the baby duck home with us had they let him!
March 22, 2013-Malakai's 3rd day at food school (we have this every friday). He actually mimicked his therapist!!! She usually tries to get him to play with his food, just so that he'd come in contact with it and touch different things. And he actually put a piece on his head and tried to "sneeze it off". He placed it on his head, tipped his head, and went aaahh (as if to say ah-choo)!!!!!!
March 21, 2013-We went out to dinner. What a disaster!!! We try to go out in public every once in a while to teach the boys how to deal with it, but holy cow, this was ridiculous. We went to outback, and it happened to be during the busiest time we could have picked. We sat inside and waiting but Kai was flipping out that he couldn't touch and get to the ceiling fans so we went outside to wait. This caused him to freak out because he wanted to be inside where he could see the fans. We went back inside and basically took over a corner where they could run free and not bother others. Once we were seated, the boys ate so many rolls that by the time dinner came, they were full,done, ready to go. While my husband and I scurried to finish our meals, we were met with screaming, crying, getting out of seats, throwing anything they could find, and demolishing of any kind of sugar packets. I am so glad that it was busy and loud, because it would have been such an embarrassment had everyone around us been watching.
March 20, 2013-Today the ECI physical therapist came by to individually and personally assess Kai. And guess what? He tested out of PT! At 1st I was upset about this, but then it hit me, he has progressed enough to be able to test out of something!! It was a happy moment. I am happy to know that he will still be receiving PT from West Texas Rehab for a while yet, but that he is doing well enough with his coordination that this is all he needs for now=]
March 19, 2013-West Texas Rehab held their monthly support group meeting. Tonights topic was creating an behavioral plan for your child. I got so much wonderful information out of this! And I was able to get the director of PEN on board with the Spectrum Connection!
March 18, 2013- I took a trip to the dollar store again today. I got boys these infamous water beads, play dough, and foam shapes. The water beads are great! They boys love them, they are a great sensory bin activity, and they really have to work their hands to pick the slimy things up! Kai also loves to squish the play dough, we don't do much else with it yet, but at least he is touching it! The foam shapes were bought to try and use in the bath tub. They should stick to the walls when wet=]]
-We received the news today that Daddy will be gone with the military for 6 months in the near future. This was really hard on me and i'm having a hard time learning how to get the boys through something like this. When J is gone, even just to work daily, Kai sits at our master door crying and trying to find daddy. It will be interesting to find that line between, talking about daddy enough that they remember him, but little enough that they dont get overwhelmed with missing him. I sure hope Kai doesn't back track during this time=[
March 17, 2013-Happy St. Patricks Day, and happy 18 months Destin!!!!!!!
March 14, 2013-Kai had an eye check up! We were always pretty certain that Kai could see just fine, however the eye locking he does while spinning, and his consistency of putting toys close to his face, while could be sensory caused, still caused some concern. The eye doctor was absolutely wonderful! She was fast and good at what she does. She did everything she could to see his eyes so quickly while distracting him as to not upset him. As I suspected, his eyes are just fine=] She said that he is far sighted, but it's normal in children his age and he doesn't have to come back until he is 4=]]]
March 13, 2013-Both boys saw their specialized skills trainer today! She was wonderful! They spent their hour trying to get to know each other and feeling each other out. We can't wait to see her again in 2 weeks!
March 11, 2013- Our trip to dallas to see the pedi-ortho was a total bust. I am not a fan of this doctor, at all. It was the longest wait for such small kids. When we were seen, it was in a open space where the kids could wander around and get into everything they just had sitting on the floor and shelves. Then Kai needed xrays, which has to be the scariest thing in the world for any child, let alone an autistic child. Then we were put in an actual room,to be left there for almost an hour. The woman was quite rude. The first thing she said when she walked in the room was, "He doesn't look autistic." WOW!!! I seriously wanted to cry and scream and tell her that I didn't say he had down syndrom, he has autism, not a facial feature recognizable diagnosis, now can we get back to his knees. Basically, we learned he doesn't need surgery. Which i already knew. She said he'll just have knobby knees and have all over loose ligaments, nothing she can do about it. This scared me and angered me! So i worked with his therapists to figure out where we go from here. They were able to explain that he doesn't have any majors issues that would call for surgery, he does have joint laxity, and the bone growth on his knees may turn to knobby knees. They told me the outsides of his knees line up great, the inside is what is concerning and we'll just keep an eye on it before getting a second opinion. The joint laxity is not something we can treat or cure, but something we will watch for the rest of his life, to ensure he doesn't injure himself. We also have to try and keep him from sitting or bouncing on his knees (which is all he does).
March 8, 2013- Kai started food school today!! We recently learned that Kai has hyposensitivity of the mouth. This means that he cant really feel the inside of his mouth, requiring him to need more oral stimulation. This is why he chews on his shirts and toys so frequently. Food school is going to help him sense things in his mouth, help him understand biting and chewing so that he doesnt shove entire meals in his mouth at one time, and help him to learn to live with a sensory overload. They'll teach him to keep food on the table, even if we dont want to eat it, help with our inability to have dirty hands, and help with our ability to sit at the table for a decent amount of time.
March 7, 2013- We went to visit a friend in the hospital. The boys actually did pretty well. They were antsy and wanted to get into everything, but they weren't bad. I'm glad the scary hospital setting didnt throw them off! Kai spent his time stemming by opening and closing cabinet doors=/ But at least they were quiet! Kind of.. =]]]
March 5, 2013- I attended another one of the Reach for Difference meetings. I absolutely love this group!! I will post the letter that I wrote for the newsletter and I will start keeping up with all the great information that I learn at these meetings=]
March 3, 2013- I set up a sand and water table for the boys! I think this will be a great "sensory bin" opportunity=] This is an outdoor table,half sand, half water, a lid with race track, and a uv protecting umbrella. I purchased some play sand from Home Depot (which I do not like! Anyone have other advice?). I also purchased some rocks, the smooth ones meant for vases, some small rubber reptiles, and a few sand toys, all from the Dollar Tree. For the water side, I bought a bag of marbles for them to fish out of the water. I think in the future we will try colored rice, and a dirt/gardening center with this table=]]] They love it! Im so glad! =]
Feb. 27, 2013-Mommy set up a plan with ECI today. We sat and discussed what specific things each of the boys needed help with. We also talked about their entire daily routine, what it consists of, what works great, and what we struggle with.
Feb. 22, 2013-We went to the circus!!!! The boys absolutely loved it! They actually sat and clapped when appropriate and Kai absolutely loved the lights! I couldn't believe that he actually sat and watched the show!!
Feb. 20, 2013-Today the orthodics department actually measured Kai! It's been a rough few weeks trying to get prescriptions filled for these and trying to get into get him measured, but it finally happened!
Feb. 16, 2013-One of our little friends celebrated his 2nd birthday today! They did well sitting at a table and eating their meal. They were given the opportunity to play in a gym with lots and lots of other kids. I was so nervous, and I didn't know how Kai would handle it. Even though he was almost trampled by older kids on multiple occasions, he did really well! He actually walked away from mommy and daddy and spent his time watching people play, as well as throwing a ball and going to fetch it. I was so proud of how well he handled it!
Feb. 13, 2013-Both boys got an evaluation with ECI! We were very nervous about this day, but we know the boys will get what they need. Destin was approved for occupational therapy and life skills help. Kai was approved for occupational therapy, physical therapy, speech therapy, and life skills training. I'm so glad they will be getting more help!!!
Feb. 11, 2013-Both boys had checkups and they are doing great! Destin is behind in very few areas in which we are not worried about. Kai is doing well. His doctor is so proud of how far he has come. When she first met him, he couldn't even walk! =]
Feb. 7, 2013- Kai had a brace fitting!! We are very happy about this because he has outgrown his braces and really needs new ones. Today they checked his braces, confirmed that they are too small, and sent me on my way to acquire a new prescription for orthodics.
Jan. 30 & Feb. 4, 2013-Jan 30 & Feb 4th- We started meeting with ECI in order to start paperwork and get everything going. We discussed prices and paperwork and services, school, and what is available to us=]
Jan. 18, 2013-I know it has been a while since Kai's last update. He is doing the same. He is getting good at his gentle touches, even with his brother!! No new words although he seems to have mimicked uh-oh this week=] He had another hearing evaluation and his left ear seems fine but his right needs to be checked again. We are waiting to hear back from an audiologist to get a processing test done. They can actual tell if he is processing whats he is hearing and at what rate, so good things=]] He has an appointment to get refitted for new braces in feb, as well as his new ot, pt, and st re-evaluations. In April we will start the paperwork for school this fall=]] In the mean time, we are going to the child study center for a new autism screening and back to the genetics doctor in fort worth for a one year check up and possible sickle cell testing. I'll update when all these things happen=]
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Dec. 13, 2012-Malakai blew my mind today! I had a neurology appointment in which I had to have nerve testing and didn't have a choice but to take the little man. He sat in a chair and watched for an hour!!!!!!!!!!! No screaming, no crying, he just sat and occupied himself and watched, it was unbelievable!!!! ♥
Dec. 11, 2012-I witnessed the sweetest thing tonight between my boys! Destin was laying on the floor crying and Kai comes over, kneels down beside him, and starts patting his back!!! This is HUGE! This means he is making a connection and understanding how is actions can affect another person!! ♥
-Kai did great at therapy today! He climbed into a swing by himself and said, "Go!" Congrats Kai, mommy loves you!
Dec. 7, 2012-We had a better week at therapy and kai started eating again today!!!!!!! We have an awesome friend that loves us enough to fly down and spend a week with us. We got a new fireplace tonight!!!!! Can't wait to get kai on this horse tomorrow!!! We are so blessed ♥
-We also got the surgery rescheduled for Dec. 19th, i'll update as that comes closer=]
Nov. 27, 2012-kai is supposed to go in for surgery at 6:30 am, and i get a call today saying our insurance wont be covering it. Um, i'm sorry, where was this phone call weeks ago???? The night before, seriously? So we are changing locations and it will be rescheduled, but its looking like it wont be until the end of december, beginning of january >=[ But on the bright side, when my boys stop and look at each other with such love and interest, and then giggle at each other, my heart truly melts. I love you boys ♥
Nov. 25, 2012-Kai did better than expected at thanksgiving! He was iffy, kind of whiny, and stuck to my side for a while, but he did alright!!! Wednesday, he goes under, so please please please keep him in your thoughts..
Nov. 16, 2012-After a little bit of a push, Malakai had a pretty good day at therapy! We couldnt get him to drink from a straw but he had a good time, followed a chart today, which I found super adorable, and with a little push said "go" in sign language! I'm still fighting with a handful of doctors to out rule the ridiculous accusations from our last doctor so kai won't be on his horse again this Saturday but all the missed sessions now are going to be made up later!!! =]]]
Nov. 13, 2012- Kai saw an ENT finally today. Due to his last traumatic experience, he wouldn't really let this doctor get a great look at his ears, but he did confirm he has a large amount of wax build up. Because of his inability to let doctors touch him or clean his ears he is going to have to be put under. In a few weeks we will go to the er, have him put to sleep, and they will thoroughly clean his ears. While he is out they will have an audiologist standing by to do a hearing test since he failed his last one. They are also going to be checking for fluid in his inner ear and if there is any, they are going to be putting tubes in. I'm a nervous wreck and the thought of my baby being put under scares me to death, but at least he is getting the help he needs and maybe this will help him start talking!! =]]]
Nov. 11, 2012- Due to some paperwork issues, Kai was unable to ride but Kai had a blast yesterday seeing his horse and playing with his friend Hunter=]] They boys had a superb day playing with dad today while mom had a great day at work!! Malakai is not only petting the animals so nicely but when his brother dropped something today, he picked it up and handed it back to him!!!!!! Destin is officially petting the animals also and can say, mama, dada, dog, down, and done=]]]
Nov. 9, 2012- After Kai's OT recommended equine therapy, I started looking into it. The Family Readiness Center made me aware today that they had four spots for a child to receive four days of equine therapy fr
ee and I was being given the chance but I had to have the paperwork in that day. Seeing as how we already had a doctors appt we could have the paperwork filled out that day so I took it with to the doctor. After checking his ears and not being able to see due to wax build up, 2 adults (with full body weight) pinned my autistic 2 year old to the table while they scraped out his ears until they bled. I have never, ever, ever heard him cry or see him shake the way I did today. It was heart wrenching. After he calmed down, I asked the doctor about the paperwork, and......he REFUSED to fill it out!!! Why? Apparently my son isn't mentally stable enough to be around horses. Here's what I think, you took a child with a sensory processing disorder, pinned him to a table, with probably too much force, scared him half to death, and scraped his ears until they bled...I would have cried too!!!! My son is absolutely mentally sound and stable!!!! I will find a way for my son to get what he needs. Mommy will prevail!
-To those who saw my status about Kai not getting equine therapy...i called the Legacy Complex (where the therapy would be held) and explained my situation and expressed my heart break over the situation. She gave me the opportunity to bring Kai by today and he LOVED it!! She has a helmet that fits (which was unexpected), he picked a horse that took really well to him, and he even rode a little!! He looked like such a cute little cowboy! I'm one happy momma whose son starts his equine therapy sessions this saturday=]]]
-Malakai was actually petting a dog at the Legacy Complex today, didnt get upset when the dog was following/hearding him, and even pet his horse!!!! He usually just ignores or hits our pup, so seeing him be so gentle with an animal that is strange to him, made my heart just melt=]
-When I took the boys to the doctor this week, there was a woman sitting next to me explaining that she couldnt understand why I needed a stroller for my two kids because she did it on her own without one. This frustrated me because I felt she didn't understand what I go through and was judging my skill and strength as a parent. I also was frustrated because I wan't to point to her own 2, grown children bouncing off the walls and fighting, and say "That right there, is why I have a stroller". I already wasn't a fan of this women. She then made a phone call where she obnoxiously expressed how she has a job working with special needs children for 6 hours a day and everyday she just yells at them and questions if she can just leave them to sit there because no one would know. I was soo unbelievably disgusted and now i'm scared for kai to start school in august=[ I just don't understand how someone could do this to a child, why would you take a job like that if you can't handle it or don't have a caring bone in your body? Why would you say stuff like that, out loud, where there are a room full of parents around you? I wanted to know where she worked just to be sure my kids never attended there!! It's people like this that make a mothers life 10x harder when she was already on the edge.
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