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 :) 

Vacation in the mountains

I write this while sitting on the back porch of our cabin, nestled back in the woods of Tennessee. The peaceful sound of birds chirping while I rock in the rocking chair is just what we have needed lately! 

Connor is taking a nap now, which has been hard to accomplish the last few days! You just don't realize how much vacation can mess up a 2 year olds sleep schedule. 

We were planning on our cabin having a swing, unfortunately it doesn't. Not sure if you remember, but we swing daily with C and it seems to make a world of difference in his behaviors and focus. After 2 days of a little boy constantly running around, meltdown city, major obsessions with doors,and terrible behaviors... we got desperate! We found a porch swing at one of the restaurants and swung for quite some time. We even searched for a park to find some toddler swings- that was a first! We can say that we have never looked for a park while on vacation! Thankfully we found a nice playground!! C was able to get some swinging in and use a lot of energy climbing and sliding. *Connor and Daddy on the slide*

*Swinging at the park*

Just because we go on vacation doesn't mean his daily requirements stop. We continue to do and blend his gtube feeds, work on eating by mouth, put his CPAP on for sleep and struggle to find alternative ways for him to get his sensory input in. We are over the moon to finally have a vacation though :) The breaks from our work demands, weekly doctors appointments and daily therapies is very nice and well overdue! 

Now time to sit back, rock, relax and enjoy all of God's beauty... At least until Connor wakes up! :) 

*Swinging at Apple barn grill*

What this little guy has taught me

Spending over 3 hours in the car today going to and from an appointment for C, I had time to reflect on our life. Boy have I learned alot since the birth of Connor! I decided I would share my thoughts on what our little guy has taught me since he joined us here on earth.....

* First and foremost, ANYTHING is possible. 

    Our little 1lb 8oz, 13 inch boy is a walking miracle...if you ever had a doubt in miracles, just take a quick look at him! 

*He has taught me not to take basic life skills for granted.

    I never, in my wildest dreams, would have imagined this life for our child. I love to eat...how could something we love so much be so difficult?! Even though he is starting to make headway with eating, I will never forget where he came from. The first time I was able to bottle feed him in the NICU was terrifying & exciting at the same time, the first time he ever opened his mouth willingly for a spoon was amazing, the  first time he asked for "more" food had me in tears, the first time in over 2 years  he finally ate more than ounce of food! People do these skills multiple times daily and never think twice about it, but each one of those are HUGE milestones and we celebrate each and every one of them! 

* He has taught me that it is okay to cry.

    I am pretty sure I have cried more in the past 2.5 years than I have in my entire life...and that is okay! The tears aren't always of fear, some are of joyous moments, some are from exhaustion, some are from stress, and some tears are just because! It may look like I handle some of his life struggles easily to everyone, but that doesn't mean I don't ever cry. As a matter of fact, I can seem to keep it together but one odd, simple thing can trigger a huge, snotty, red faced meltdown! It is okay for me to get those tears out because once that session is over, I feel like I could take on the world and am ready to shoot for the stars to help my little man even more!

* He has taught me that I am capable of doing things that I never thought I could.

     For instances, my husband and I work opposite schedules (for 2 years and counting) so we can be home to care for him. Plus, no daycare around us would take a child with a feeding tube and CPAP, even if they did the nurse in me probably would have a lot of issues. It hasn't been easy having a child with special needs and both of us feeling like a single parent all the while. But...we continue to do it because it is the best situation for him at this point, not to mention we still have to pay our bills! 

* He has taught me not to be so quick to criticize. 

      Just because that child is having a  major meltdown in the store doesn't mean they aren't getting what they want....maybe the child saw a motorized cart and it terrifies him, maybe the voice on the overhead speaker was just a little too loud, maybe he doesn't do well in loud crowded areas, maybe that relaxing sound of rain on the roof is very upsetting to him. All of those things may be why you see C having a meltdown. Before him, I never would have stopped to consider simple things like that!  Now anytime I see an upset child, I never even think that the parent should do better parenting- my heart  just feels for them. 

* He has made me a better peds nurse.

     I think having a child changes the way you look at nursing, especially in pediatrics. I also think having a child with many health issues and developmental struggles makes me more compassionate with my patients and families than I ever was before. I know what it is like to "sleep" ( aka: rest your eyes for a VERY short period) on that couch, I know what it is like to be sleep deprived from stress and worry about all the what ifs that you can't control, I know what it feels like to not know if your baby is going to live, I know what it is like to watch your baby quit breathing and watch them intubate him right before my eyes, I know what it feels like when they tell you how far behind your child is developmentally, I know what it is like to worry about what type of life your child will grow up to have. This entire journey with Connor has changed the way I do nursing FOREVER and I thank him for making me a better nurse!

     

I could probably keep writing about all the things Connor has taught me about life, but I would be here all night! I know that my entire outlook on life has changed since March 25, 2011 thanks to an amazing blessing from God. :) 

A week later....

So here we are, a week later after the Marcus evaluation....and our little man is doing very well with puréed foods!!! :)

{Actually ate some beans at the Mexican restaurant! The first time he has eaten a decent amount of food in a busy restaurant like that!}

Each day he is taking more and more by mouth, today he took about an average of 4 ounces per meal! I am not sure of the  number of bites because I just a quit counting....why count when he is so willing to eat them?! As soon as he swallows I am offering another bite! This is HUGE! I am hoping and praying that he continues down this path. Josh and I both agree we are willing to purée up whatever he wants as long as he eats it. Eventually we will work on more textures but now I say lets master getting enough daily intake and then textures. Now don't get me wrong, we still offer things that need to be crunched and chewed but it is randomly throughout the day or near the end of a meal. I still want him to get practice chewing, I don't want to loose the skills that he has already learned.

So, we are weighing the foods before and after so we can get an accurate count of the total he is eating. I then subtract that from his total amount of gtube feeds and give him the remaining amount of his blenderized food in his tube. We also are counting calories to make sure he at least maintains his weight. So there is alot of calculating that goes into his meals each day. 

Here are just a few things he has been eating: chickpeas, beans, potatoes, green beans, coconut yogurt, mixed fruit, beef, chicken- all puréed. He has been eating about 1/2 banana, taking his own bites from the actual banana the past couple days- just amazing! He is also is drinking juice! That is another big step considering anything but water would make him gag and vomit. Thanks to a littleElmo   on a juice box, he is drinking about 3 4 oz "Elmo juice" per day. Hey, it is extra calories....every little bit counts! 

{Drinking juice}

We couldn't be more excited and proud of our big man! I will continue to update, hopefully things will continue to progress! We go to see his nutrition and special needs doctor in Spartanburg next week, my plans are to tell them I am ready to wean his gtube feeds now! I feel if he is this interested, then why not wean his feeds and allow him to feel hunger instead of always being full...it has got to help with his oral intake! 

What a SHOCKER!!

Well yesterday we had our 3.5 hour ride to Atlanta for Connor's evaluation before the clinical trial. I had never even considered what we were told........

Marcus Autism Institute is a beautiful facility! It was very welcoming to adults and children. The family room and playroom was a nice commodity to have while you wait, also amazing for the people that are there 6-8 weeks with their children. We met some families that had been there from 3 to 8 weeks, their children were starting to make great progress! It was such a comforting thing to know all of these people we interacted with knew exactly what life was like with feeding struggles. 

We first went over all of the details of the clinical trial, signed multiple consents and then filled out a huge packet of papers about Connor's eating habits. The next part was to watch me feed Connor. They had us in a room with a mirror window while they sat on the other side and video recorded us. I had an earbud in my ear while they told me what to do next. Connor was presented with puréed green beans, pears, potatoes, and garbanzo beans.....did I mention they were ALL puréed?! I was only allowed to offer a certain amount of food on the spoon in 30 second intervals. Every 30 seconds they told me in my ear to try the next food, we did this 16 times. I wasn't expecting this to go well, he hadn't had a nap all day and it was in the middle of his normal nap AND he has just finished his gtube feed about 1.5 hours before! And wouldn't you know Connor opened his mouth for each bite and had swallowed it before the 30 seconds were up...he even signed "more" during this rotation of food!! Josh and I were astonished!! We have struggled with feeding issues basically since he was 6 months old and he ate EVERY SINGLE BITE!!

After the completion of the feeding observation we met with 2 of the doctors. The first doctor tells us that C didn't display any refusal behaviors so therefore he doesn't qualify for the clinical trial! What?!! They don't want to give him medicine for a behavior problem when he doesn't have that problem, which I agree with the medicine part. We all know that if this were a year ago, he would have qualified because of his behaviors. Thanks to our great feeding therapist and food play so often, he now rarely displays negative behaviors with food and is willing to taste almost anything. His problem now is chewing and swallowing...which apparently is not what this clinical trial is focusing on. 

We then met with another doctor, the head doctor of the feeding program at Marcus. He told us that C did so well with puréed foods that he believes if he were to come back for 1-2 weeks for intense therapy that he could hopefully be weaned off of his gtube feeds! We discussed the insurance issue but it turns out his secondary insurance is accepted there! It will take atleast 2 months to get approval but hopefully all will work out. In the meantime, the doctor told me he was going to email me their protocol for what to do so we can work on it at home. I am anxiously awaiting this email so I can see how they handle these challenges and what they recommend. 

Since we have been home, we have gone back to puréed foods. He never was very fond or successful with pureed foods in the past, hence why we moved in to more solid foods and have never tried purees again. Last night he was very successful, he did end up vomiting but did continue to eat afterwards. So far today he actually ate about 45 bites from the spoon at lunch! He demolished his potatoes at lunch! I am thinking all of the textured foods, chewing and swallowing all go hand in hand with his sensory issues...which I am praying he will overcome one day and eat everything! In the meantime we are going to offer him puréed foods and just see how things go.

I hate that he didn't qualify for the trial, but we learned some new things while we were there! I will update on how he is eating, I am praying that he continues to be so willing to accept food! 

Random phone call

Last week I received a random call from one of the GI doctors at C's GI office. The phone call was about an opportunity for him to go to Marcus Autism Center in Atlanta, GA for a week of free intense feeding therapy at the feeding clinic! Sounds too good to be true, huh?! 

Not sure if you remember but over a year ago I filled out the 30 page application to Marcus feeding clinic only to battle insurance about getting coverage there. I never was able to get approval after several appeals. Basically we decided we would continue doing therapy with our favorite feeding therapist at the hospital weekly and just see how things go. Connor's progress has definitely been a roller coaster, one week he is very interested in food and tasting and then the next he may refuse everything that he has previously shown interest in. We continue to do food play, no pressure involved 3 times a day. We make sure to include him at the table even if he isn't interested. I will say he has made progress but it is at a super slow pace. Right now his biggest struggle is swallowing the food, he will put food in his mouth and do a few chews and then packs it away. He will keep the food there forever unless he throws up, occasionally he swallows it. 

I do find it quite interesting that we received this phone call not long after we were told he is showing characteristics of autism....how fitting, this is at an Autism Center...maybe this is meant to be?! I called Marcus to get all the details and to find out when we need to be there. So, it is a clinical trial involving intense therapy from 8:30-4:30 Monday- Friday. In the morning before therapy starts, C will get a placebo or a medication that is being studied to reduce anxiety and allow the brain to accept new therapy while reducing past associations with food. Regardless, placebo or not, C will get all day intense therapy! Josh and I feel we would be dumb to pass this opportunity up..we will never know how Connor will do unless we try. We have decided not to question this decision and trust that this is Gods way of giving us a sign to give this feeding therapy a try. :) 

Here is the kicker, we have to be there next week for the first evaluation ( just one day) and then the following week we need to be in Atlanta ready to start! Very short notice and of course it has put some strain on me to get my shifts covered at the hospital, but thankfully I was able to. Thanks to all my amazing coworkers that helped me out!  I stress about the work situation  and know that I need to work but I have to do what is best for my little guy and this is an amazing opportunity that we can't pass up! Thankfully it is no big deal for Josh to get off work...whew!

So now I sell the heck out of Button Lovies so that it can help us handle lodging in Atlanta for a week, every little bit helps! We all know that a week stay in Atlanta won't be cheap! But, no stress or worries...we will make it happen! :) 

I will try my best to update daily while we are in Atlanta to share how things are going! I am beyond excited about this opportunity for our little man! I pray this week of intense therapy is just what he needs to push him to eating successfully everyday. 

C with his goldfish Button Lovie...how cute is that?!

C and his best friend, George! George goes with us everywhere now!

Trying to figure out how to work this new tricycle!

Mommy and C :)