Halloween!

I know I am a little late, but I wanted to share Connor's first Halloween actually enjoying the trick or treating!

Of course Connor wanted to be "ickey mouse" , his absolute favorite right now. We went to a handful of houses, I figured he is only 2.5 years old so he doesn't need to visit every house. As we would be walking up the sidewalk we would remind him what to say and he typically said "ick or eaaaat" before we got to the door! It really was cute.

The even more exciting thing about this Halloween is that Connor wanted to eat.....everything! His favorite was the dumdum suckers. I think this may have been his first time discovering what candy was all about. Obviously we only allowed him to have it in moderation. 

A sweet moment I caught while we were headed to the first house. 

Busy little boy

Connor man has been surprising us lately! He has been repeating words and spontaneously saying words a lot! It is always so nice to him say a word or two and it actually be appropriate for the situation. He also seems to be understanding us more. For example "Connor, please bring me your cup."- he is actually bringing me his cup 90% of the time! Or if I ask him to go get his jacket, he runs to his room and tries to reach for his jacket hanging on the hook . He is definitely making improvements in the speech department and we are thrilled! This will ease some of the frustration he was having because he couldn't communicate what his needs were very well several months ago. 

He has been sick this week ( every week he is off his appetite stimulant, he gets sick... It never fails!) He had a long night Sunday night with a lot of coughing, congestion and throwing up. Thankfully he is over the worst and is sleeping through the night and just has a nasty cough left. He actually is feeling so well he is all over the place! He is a busy little boy, but goodness did he give me several heart attacks yesterday! Falling off our bed head first, tripping over a toy that he wasn't paying any attention to and hitting his face on the floor, flipping his tricycle several times WHILE moving! He is constantly doing something, thank goodness he is a tough little boy! :) I felt like he was determined to have an ER visit with all those crazy accidents yesterday! 

          * this little boy loves to help me clean!*

 

I love you

I said it today...I got a hair cut from a new lady so of course the 100 questions they ask to get to know their client come out:

 

"So what high school do you go to?"-pssssh I sometimes wish I were back to my high school days with no worries.

"So what do you do?"- explain that I am a grown up with all my grown up responsibilities. :) 

"So you work every weekend? That must be tough"- my response explained how early we had little man and that this schedule works out best for him and his therapies. Then the words came out, "he has autism". 

I was kinda shocked at how easily I said those words to a stranger that I was just getting to know. Several seconds after I said the words, I felt my heart flutter. I am not sure if the flutter was from me still adapting to speaking those words about my own child aloud or if it came from all my worries over the last several months. Either way, it was my reminder that "WE GOT THIS" and we will do the best we can just like we have done the last 2.5 years. 

          * My new autism puzzle piece awareness necklace *

I could focus on all the lining stuffed animals up over and over preventing him from going to sleep, repeatitvely walking or crawling a particular pattern while clicking his tongue, obsessing over all things Elmo, routinely stacking the same 3 colors of blocks in the same order, putting the animals inside and then outside the barn over and over, obsessively opening and closing the doors, etc but I choose to focus on the positives. For example, we heard those 3 beautiful words "I love you" for the first time before he went to bed the other night and he is consistently saying it every night! Those words trump all of the behaviors we see and deal with daily! I tear up every time I hear those words coming from his sweet voice. His language is starting to bloom and we are ecstatic about it! The other day he was sitting in the backseat babbling away to himself and then just started laughing! Laughter heals all, and listening to his adorable laugh makes my heart so happy. Another positive is that he is continuing to improve with his eating! He is steadily gaining weight while he still receives 2 gtube feeds/day. We are hoping to cut another gtube feed within the next few weeks, assuming he continues on this path. 

     *Lined all of his things up then pretended to nap*

   * Snacking on some yummy apples in North Carolina*

Connor's ABA therapy is twice a week right now for 3 hours at a time, we are hoping to increase to more hours soon. Feeding therapy is going well even though the little booger barely touches his food when we are there. Speech therapy is also improving, he consistently named every animal presented to him this week! He actually let his occupational therapist do hand over hand with the scissors to cut a piece of paper today! Most of the time he gets defensive when trying to do hand over hand, so that was a big deal. Connor continues to be very active during Early Intervention so I just recently changed his schedule to hopefully improve those therapy sessions.  Whew, I think that is all the therapy updates for now :) 

        *CHEESE....in Connor's world this must mean stick your tongue out!* 

Time for honesty...

It is time for my honesty, my full hearted- hold nothing back- honesty.

I write this blog to share our life with our loved ones and friends that have been there to support us from day one of this journey. I don't write to be judged. I know people are very quiet about things in their life, but that is not me. If you know me, you will know that when I share important things that is the way I heal. I never once kept our fertility treatments and struggles quiet,I never kept Connor's NICU experience quiet, I have never kept our life quiet. One reason I share so much is because I find there are many others out there going through the same situation and to be able to bond over similar struggles is such a great support. Another reason I share is because it is so healing to me. To keep all of my emotions and thoughts inside could cause disastrous things, and I feel much better just by sharing. I don't share our journey for pity or sorrow...I share so that I am able to help educate someone. Someone who may not know about fertility issues, premature babies, feeding tubes, life with a special child, sensory processing disorder, etc..The more awareness then the more accepting people are of these things. So as I share the results of the evaluation, I don't want judgement- full on support and awareness are my goals.

Monday was an anxious day for me...not because I didn't already know the results, but waiting to hear those words that my heart has already been telling me for so long. Our little guy did everything in the evaluation just like he would do if he was in our home environment, so I know they got an accurate view of him. The 3 evaluators were busy writing on their clipboards the entire time...every little move, every little interaction, every word that came from his mouth. I will say that actually hearing the words "Your son has autism" is quite the largest kick in the stomach, your heart sinks, and you feel 1,000 different emotions all at once. There are tears, which I would expect to be completely normal for any family after their child just recieved a diagnosis. The tears come from worrying about his future and thinking back to when we planned and talked about children...we never imagined any of what our life is like in that vision. I don't know too many people that do imagine those things or even think what if. But, this little guy has never once gone by that  book " what to expect when you are expecting" so I should not have expected anything different once he joined us in this world 12 weeks early. He has an entire separate series of books that he seems to be going by, I just wish he would share them with me! Life can never prepare you for this, we just learn as we go and pray that God leads us in the right direction. 

Anyways, the autism diagnosis does not change my child. He is still the same little boy that we prayed so hard for and have always loved so much. He will continue his therapies, we will continue to fight like crazy to provide him with the best, and we watch him grow into an amazing, inspiring boy. I KNOW God has a plan for this little guy. Even though we aren't aware of that plan,we know that God blessed Josh and I to be his parents and we are just along for the ride. This special little boy has opened our eyes, changed our perspective on life ,opened our hearts, and taught us to embrace the little things.

Thanks to you all for your continued support, we are beyond blessed to have such great people in our lives.

With Love,

Laura 

CARE evaluation

Back when Connor had his STAT test done in July, the developmental doctor that did the evaluation scheduled him for the final evaluation in January. But, back in March his EI put him on the CARE evaluation list as well. Typically it takes a year or longer to get an evaluation for autism, which is why we put his name on the list. I didn't want to wait until he was already three if he needed it done but I was more than willing to cancel it if he didn't need it by the time it rolled around. So, last week while Connor was sick I recieved a phone called from SC department of disabilities and special needs. They were ready to do his final CARE team evaluation! So he has it scheduled for October 7th at 9:30. It will take 4 hours long for them to evaluate him, and several different people with be a part of the evaluation. 

Of course I am a ball of nerves....I had mentally prepared myself for this in January, not next week! But I also know that the earlier the intervention the better, so we are doing what is best for little man now. So please bare with me the next few weeks if I seem a little more sensitive then normal. :) My mind constantly worries and the thought of a diagnosis that stays with him for life is a lot to worry about.  Regardless, if he gets a diagnosis he is still my same adventurous, happy little boy. I will NOT let autism define my child. You do wonder if he will get judged or made fun of, will he ever drive, will he have a date to prom, will he go to college, will he be able to live on his own, will he get married....those are all the thoughts that run through my head when I think about his future. That is why I fight like heck now to provide him with the best so that he is capable of living the life he wants to when he gets older. 

My heart knows that his ways of doing things aren't necessarily normal but they aren't wrong- they are part of what makes him so special. For example, as I write this he is running around our backyard. As he is running the same path over and over on his tippy toes,he is making a clicking noise with his mouth. But as he is doing this he is observing every little thing around him, that little speck of grass, that crunchy leaf, that bird chirping, the light breeze in the air. He teaches me something so valuable, he teaches me to slow down and enjoy the simple things in life. 

While we gear up for this evaluation, his ABA is getting started this week! We met his therapist today and she does great with Connor. For now we are starting out with 8 hours/ week with her and he will still get his 4hrs/week of his other therapies. He qualifies for up to 20 hrs/week of ABA but that is quite tough to work out with his therapy schedules, nap time, and the amount of time we spend trying to get him to eat by mouth. I am just so thankful to be able to get him into ABA before he turns 3 so he doesn't have such a long wait! 

Keep our little man and our family in your prayers please, strength is what we are going to need as we go through this process. 

These photos are from his super hero photo shoot by Jen+Holly photography.. I think they absolutely capture my true super hero! :) 

Food, ABA, & big boy bed updates!

It has been a little while since I have updated on how things are going in our little world! Lots of changes :)

First of all... Food, food, and more food!! We still aren't sure what clicked after our few hour visit to Marcus feeding institute but it doesn't matter because our little man is eating! We did pretty much puree foods for a couple weeks and slowly transitioned to more solid foods. Right now, C is eating a mixture of foods and it is absolutely amazing!! Some examples of what he has eaten: slices of pizza, dill pickle spear, lemons, bananas, goldfish crackers, yogurt, chicken, quesadilla, beans, chips, broccoli and cheese soup, grilled cheese sandwich, sliced cheese!! I know some of it is junk, but right now we aren't making a huge deal because he needs to master the eating skills! The list could go on and on, he is eating! Yippee, soooo exciting!  While you read the list I am sure you noticed those things contain milk, yes milk! We are 99% sure he has outgrown the milk protein allergy he had! His skin doesn't break out where it touches, no more eczema from milk products, and no major vomiting or other GI issues! 

                                  {Getting practice, but still make a BIG mess}

We, Josh and I, made the ultimate decision to cut back his gtube feeds even more than previously to encourage more intake by mouth. Of course  all of his doctors are aware and we are now making weekly weight checks since the cut back. He still gets 2 gtube feeds per day, at 6 am and 10pm so he is asleep during those feeds. Now he has all day to work on his eating skills without feeling full from his gtube feeds. So the first week of this cut back he lost 4 ounces, the following week he has maintained his weight. Hopefully he will continue to maintain and eventually gain weight with this schedule!  

                         {Spaghetti face}

                                                   {Yummy lemon}

On to the ABA therapy updates: Back when C had the STAT test, we were told he qualifies up to 20 hours of ABA therapy per week in addition to his current therapies. Since then, we have been trying to find an ABA therapist. This is a struggle and is starting to make me very nervous. Since babynet doesn't pay the therapist the greatest, we are struggling finding one.  The reason this makes me nervous is because C looses babynet when he turns 3, therefore if ABA therapy hasn't been initiated by then he is placed on a VERY long list. He is number 1,048 on the PDD waiver, which means there are 1,047 other children in South Carolina ahead of him waiting for ABA therapy....this could be years before he could get the therapy he needs. If it gets started before 3, then my understanding is that the therapy will continue on even when he turns 3.. no breaks in therapy. See why I am nervous?! In the meantime, we continue his weekly therapies and are always learning new things to help our little man. 

He may not have an official diagnosis of Autism yet, but I am constantly researching and reading. I wanted to share this and bring more awareness to autism: 

Growing up.....C has sorta been moved to a big boy bed! We were very fortunate to make it this long in his crib. The other day when I saw him perched up on the edge of the crib, I panicked! Thank goodness he didn't have his CPAP hooked up to him yet, but that was my fear..I feared he would fall or jump from the crib and his cpap tubing get caught. Therefore we removed the front part of his crib and put a mesh rail. He has slept several nights and naps in his "new" bed and hasn't attempted to get out....yet! I am not sure what we are going to do when he gets out with his cpap hooked to him since he isn't capable of removing the mask. We will just have to cross that bridge when it happens! :) This bed change has been a big reminder to me that our little baby is no longer a baby!! People don't lie when they say that children grow up in a blink of an eye! 

That not so fun trip to Santa's Land

While we were headed to Tennessee on our vacation, we had planned to stop in Cherokee, North Carolina at a little family theme park called Santa's Land. I believe Josh was more excited than any of us to check this place out since he had gone there growing up. 

As soon as we walked through the gates C was trying to run the opposite way we were going. If you didn't know this already, public places are extremely hard to keep him with us if he isn't in a stroller or buggy. We have to physically hold his hands, sometimes he is willing, and he manages to wiggle out of our tight grasps. If we aren't holding his hand then he takes off running, no matter how dangerous the area is- This has given me multiple heart attacks in parking lots where he starts running towards moving cars! 

As soon as he sees the fun little train that travels around the park, he screams. When I say scream, it is like a scream and a growl combined, not a pleasant sound by any means. Of course we had onlookers immediately as he screamed. We were able to distract him enough to go feed some of the animals. He was most interested in the deer, after that it was hard to get his attention on the other animals. 

As soon as we made it to where all the rides were, he growled and screamed again. I guess the sounds, lights, smells, and movement was just too much for him. I was determined to get him on a carousel though! He had never been on one so we decided we would all sit on the bench. The bench doesn't move like the horses do, so I figured that would probably be a better place for the first time. We placed C in between us but that didn't last long! As soon as the carousel started to move, he flipped out. I placed him in my lap and tried to distract him by counting all of the horses in the ride, all the while he was screaming and crying. Thank goodness we were the only ones on the ride, but we gained many stares from around us. As soon as the ride stopped, Connor said "bye bye" in a pitiful whimper and we quickly got off. 

As we walked around and saw all of the other children having an amazing time, smiling from ear to ear, my heart started to break. Every parent wants their child to enjoy typical things but yet those typical things may not interest him or scare my child to death. It is tough because we never really know what he will absolutely love or hate, but I knew one thing...he was not a fan of this theme park! We found a basic slide and ladder and let him play on that for a good while before we left. 

I am glad we got to try a smaller park out first with less people, but the stares that some people gave us was ridiculous! With children that have sensory processing disorder or autism spectrum disorder, they have meltdowns. Meltdowns aren't because their child needs more discipline, discipline isn't going to cure the meltdowns or unique fears. I just wish I could tell those people that stare just a little too hard that it isn't polite to stare, and I am sure they were taught that at some point in their life! 

Needless to say, we won't be going back to any theme parks anytime soon but it was good for us to learn more of what is difficult for C to handle. We continue to expose him to things and places because you just never know what he will absolutely love! He did love the aquarium that we went to in Gatlinburg, TN.  That made Mommy feel better watching him run up to the tanks and say "fish!"  while he did the sign for fish with his hands. It is the most heartwarming feeling ever to watch your child have a good time and not show any fears :)