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!