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 :)

ABA therapy

I write this while my sweet angel sleeps....

Yesterday Connor had the STAT test done to evaluate for autism with developmental pediatrics. The first step was the m-chat which  was done around his 2nd birthday that showed him at high risk for autism. The STAT ( screening tool for autism in toddlers) was the second step process evaluation. 

Josh and I may not always see eye to eye about what makes our little man quirky, but we do both have the same goal for him: to do everything we can possibly do for him now to provide him with the best life. 

The psychologist evaluated through play with Connor while we answered a million and one questions about his health and behaviors for about 2 hours. The psychologist was testing his social relationships, imaginative play, imitation, communication, and developmental skills. I am sure she tested for more things that I can't remember, that is quite a stressful time for any parent to remember so much information. 

Both evaluators met together to discuss Connor and the results from the STAT for about 20 minutes. I am sure those were the longest 20 minutes of my life! When we sat down to get the results we were told Connor failed the STAT. In other words, he has been identified as possibly having autism.  Of course in my heart, I already knew the results....most mom's have that special power, but there is always that little part of you that hopes otherwise. With that being said, he now qualifies for 20-25 hours / week of ABA therapy (applied behavior analysis) in addition to the therapies he already receives   everyday. I know adding those therapies will make it tough for Connor and our family, but we are willing to do anything to help out little man out. The ABA therapy is obviously an intense therapy that is used with autistic children. It will get started as soon as possible. In January he will do the final step evaluation called the ADOS (autism diagnostic observation schedule). Depending upon those results will determine if he gets the actual diagnosis or not. 

As a mom, I do carry guilt. I wonder if there is something I did, or something I didn't do, or what I could have done differently that would have made his life not so difficult. When I start thinking that I try to push the thoughts away and remind myself that God has a plan. He is the only one who knows the plan and we are along for the ride....what happens is meant to happen so there is no need to worry and stress over it. Some days are easier than others for me..but regardless, diagnosis or not - Connor is still our same beautiful, amazing, strong, happy, smart, stubborn little miracle and nothing will EVER change that! 

I know God put Connor in our lives because he knew Josh and I could handle him and would shower him with unconditional love. He knew that we had amazing family and friends that are always there for support to help us through the tough times and share the happy times with. With that, I want to thank all of y'all for being amazing support to us from the very beginning! :) We love you all and couldn't not thank you enough. 

Therapy with his Early Interventionist, we just love Beth!

Hanging out at Frankie's Fun Park

First trip to Saluda Shoals splash pad....not a huge fan but took some time & he started to warm up to the water.

First time at Monkey Joes, a little overwhelming for C but he enjoyed climbing!

1 year later, still blending away!

So it has almost been a year since we started blenderized diet for C-man. I can't believe the difference it has made in his life! I am not knocking formula, but it just never agreed with him...take a quick look at the ingredients and one of the first ones you will see is corn syrup! I wouldn't want to be living off of one thing that was mainly corn syrup. In my head,real food trumps any manufactured formula especially if that is the main source of nutrition. I am not trying to offend anyone, but my child looks 100 times healthier now that we have made the switch. It wasn't easy figuring out what foods he could and couldn't tolerate but once we did it has been life changing!

So here is his weight now: 24 lbs 11 oz
Height now: 33.5"
His hair finally started to grow!
His skin complexion actually has some color now!
His nails grow like crazy!
He vomits WAY less!
No more eczema
Handles more volume than he ever has

A year ago (before BD:):
18 lbs 8oz
Baldy- hair barely grew
Vomited huge volumes all the time!
Seemed to have skin rashes & eczema patches with constant changes of formulas
Couldn't handle much formula & was always hooked up to a pump running really slowly

So here is our *AMAZING* blender that has made the BD possible for us! We are so thankful for this wonderful donation to our family.

We blend everyday typically, fresh is always best. This blend contains rice milk, fresh banana, blueberry coconut yogurt, avocado, sweet potatoes, kale, 1 cooked egg, cooked chicken, ground flaxseed, bread, Grapenut cereal, and liquid multivitamin.

We change up the ingredients to make sure he gets a variety of fruits, veggies and meats. I like to think he is one of the most healthy "eating" 2 year around! What 2 year old do you know that would eat all of that in 1 day?? I don't know too many ;)

This is how we store it:

Just a month ago we have finally moved to giving him 4 gtube feeds per day! It only took us 2 years to finally be done with every 3 hour feeds, that was truly exhausting! He can tolerate a larger amount of volume, we can adjust the amount of calories he needs, and there is almost no vomiting :) What is even better is that he gets 2 of those feedings while he is asleep ( at 6am and 10 pm) which gives us more opportunities to work on food play and eating by mouth during the day!


While we love blenderized diet, it is alot of work... I am not going to tell any fibs about that! Of course we will do whatever is best for C and not think twice about it. But, I am super excited about a new line of blenderized diet that is coming out! We can't wait to try JustFood! With C's food intolerance's, we will have to be super picky about trying these, but it will make vacationing 100 times easier ( I know, I know, we rarely vacation!) It would even be great to have on hand for those emergency times when we have no power and unable to blend! Anyways, I wanted to share this with all of the tube fed friends that follow us! We can't wait to give it a try and are so thankful for this tubie mommy to come up with this idea!

http://www.indiegogo.com/projects/just-food-real-food-meals-for-tube-fed-people?c=home They are also on Facebook: https://www.facebook.com/JustFoodBlends?ref=ts&fref=ts

CPAP and Elephants!

We have had the CPAP for almost 2 weeks now! Connor has amazed me how quickly he adjusted to it- and boy are we thankful for that!!

The day it was delivered, we couldn't even try out the mask to be sure it would be a good fit. Connor wanted nothing to do with any of the new equipment that entered our house. As soon as the respiratory therapist left, I tried the play approach. He wanted nothing to do with being an "elephant" nor did he like Mickey mouse wearing the mask!

Josh and I had a workout the first few nights getting it on. With my peds nurse experience my first thought was to slip socks over his hands and tuck in his sleeves of his pajamas. That was the trick.... Until he figured out how to get those off! Hehe After several days we quit the socks and continuously watched him on the video monitor to make sure he didn't pull it off! We have been up many hours checking on him- that paranoid mommy thing takes over sometimes! Now it seems we are up to fix the mask back over his nose from all the wiggling around.

5 Days later he willingly sat there and smiles when we ask if he is ready to be an elephant! :) Not to mention we could put it on all by ourselves, instead of Josh and I ganging up on him. He now wears it during nap time and all night. The best part is he falls asleep way faster than he ever has... there are no more hours between when we put him to bed and actually falling asleep!

Hopefully he feels better since he is now getting restful sleep and actually able to breathe all night. He is still VERY active but we are definitely noticing an increase in his speech!

Sleeping away!

Cool Dude!

A peak into our sensory world

Connor finally got his OT (occupational therapist) evaluation- this was his 3rd one! Every other time he had the evaluation he was doing fairly well and didn't qualify for OT, but since he has gotten older he has shown alot more sensory issues.

The OT is absolutely AMAZING with Connor! The first visit Connor had warmed up to him and was actually sitting in his lap at one point! That is huge considering it usually takes him a while to get comfortable with new therapists. After the evaluation, Connor scored at the 13 month old level (tough reading that!) and definitely qualified for OT. He also shows signs of Sensory Processing Disorder. Last Thursday was his actual first therapy session. His OT has started Connor on a sensory diet. Let me explain real quick what that means : a sensory diet is a specialized plan that involves specific sensory activities daily.

 Here is what his diet consists of :
Body brushing every 2 hours while awake
Joint compressions after each brushing
Swinging forward, sideways, and a little in a circle
Bouncing, rolling, and jumping on exercise ball

 Ok, ok...I know sounds a little odd but it has done some impressive things within the first full week! Connor has been talking up a storm! New words we heard this past week are : "I got it!", " Peek a boo!", " Shoe", "mouth", "more" and he does the sign more at the same time, " up", "outside", "tree", "toes"...there are more I just can't think of all of them right now. Regardless, that is a huge improvement from the few words he would say!! He is starting to focus longer and better with certain activites, so I hope that improves! That makes it much easier to try to teach him things :) Happy   Momma right here!


 The Wilbarger Protocol is the brushing and compressions ( as I call it, "Brush & Squishies!") that we are doing. It is a deep pressure technique that is used in kids with sensory defensiveness. The purpose is to help "normalize" their sensory processing so that they can function better in their environment. Here is photo of the brush that we use:

                      

So Connor seeks out sensory input ( proprioceptive dysfunction) hence why he is always so active, craves movement and tippy toe walks. He has vestibular (a system that provides input for movement, balance, spatial awareness and positioning) dysfunction. We are trying to help with this by swinging- which he absolutely LOVES now! 2 months ago I am sure our neighbors thought I was torturing him in the swing, he would scream within 1 minute of being there. Now it is an amazing calm thing for him! He actually fell asleep in the swing- I never imagined that would happen!

 The swing is set on 1 hook so we can go forward, sideways, and in a circle:

                                    

  

He also has tactile dysfunction: meaning he doesn't do well with certain textures. For instance, if he falls down in the yard he tries to figure out how to get up without having to put his hands in the grass. He will quickly touch the grass to get up, then immediately brushes his hands off. He won't touch pool noodles,sand, or scratchy things. But he will constantly rub really soft fabrics. I am making a sensory box for him, full of dollar store finds so we can work on this! :)

All the goodies that are going in the box: rice, noodles, beans ( all of which I dyed to give it a better visual appeal), Legos, sponges, pot scrubbers, pipe cleaners, rubber animals, silly putty eggs, bells, foam letters, cars, and shovels. Basically a hodge podge bucket full of different textures to play in!

My next project is to figure out how to sew him a weighted blanket to help calm him when it is time to sleep. Right now it takes him forever to wind down and finally fall asleep.

Today he did great with OT! He was very focused and almost looked like he was so chilled out that he was ready for a nap at 10:30 this morning! I am hoping that all this sensory input and the sensory diet continues to help him, not to mention help keep Mommy & Daddy sane since it calms him down a little.

2nd Birthday, Sesame Street Style!

Happy 2nd Birthday to our little man!!He had his party at the little gym, it was super easy for me! All I had to bring was food & the cake and the rest was taken care of! I am glad we decided to do it away from home because I am not sure what we would have done with all the kids because it was chilly and cloudy outside. It is so hard to believe Connor is 2! It sure has been a bumpy road with a lot of highs and lows but he continues to smile and be our strong little fighter that he has always been! Here are some photos from the party! Connor is obsessed with Elmo and throughly enjoys Sesame Street- hence why I went with this theme...not to mention the primary colors of the little gym matched perfectly!

 The Birthday Boy!

Setting the tables up

Elmo cake ( made by me!) and Connor's little cupcake (gluten and milk free)

Oscar the Grouch Dirt cups (so easy: chocolate pudding, whip cream, oreos & sour gummy worms)

Cookie Monster's Cookies (made by Heather McCants)

Dorothy's Goldfish

Birthday Balloon wreath (made my me)

Make a wish sweet boy!

Our little family

These favors were made by me as well. Since Elmo's goldfish is his favorite, I decided this was perfect. I really wanted to do real goldfish but the hubby vetoed that idea! So I melted glycerin soap, put a toy goldfish in the soap, and then waited for the soap to harden back up. I forgot to get a photo of the tag but it said, " Elmo loves his goldfish & crayons too, now so can you! love, Connor"

Connor did actually taste a few things at his party! He had a little taste of his special cupcake, grapes, Cookie Monster cookies, pepperoni, and a ruffles chip! It did him good to be sitting at a table with other children eating! Happy Birthday Connor! We love you to pieces!!

Tubes, sleep apnea, & 2 years old!

Age: 2 years!!
Weight: 23 lbs
Height: 32.75"



As you can see, we now officially have a 2 year old! Ahhh, where did these 2 years go?! Well, he had a fabulous birthday party this past Saturday. I will make a blog entry on just the party once I receive the photos! For now I want to update on everything since the last post.

Connor got his tubes several weeks ago. His ENT was going to remove his adenoids if they were enlarged, but those weren't the issue. He also did a scope to look around while Connor was under anesthesia and discovered that his vocal cords are part of the sleep apnea issues, not his laryngomalacia. Apparently when Connor was in certain positions, the vocal cords didn't move properly which caused him to quit breathing. So our next step is for him to wear Cpap when he sleeps! :( I imagine this is going to be a huge challenge with my strong, wild, determined little boy! He has to have another sleep study so they can adjust the cpap settings to determine what works best for him. Looks like another sleepless night at the hospital for this Momma. The study is scheduled April 23rd, unless someone cancels then we can go sooner.

*At the hospital with Daddy*


As for his ears, things have improved! He no longer has infections, he is babbling alot of new sounds that we have never heard, randomly tries to repeat something we say, his balance is improved slightly, his vomiting has decreased, he is putting alot more foods into his mouth, and lastly his hearing is 100% perfect now! I wish we could have gotten these tubes months ago! I am hopeful that his speech will continue to improve over time now that everything doesn't sound like he is underwater.



As far as development, he has some "quirks" that we are noticing more that he is getting older. He still tippy toe walks (forward and even mastered this walking backwards), arm flaps, doesn't really responsed to his name being called, becomes frustrated when you won't let him open and close doors or cabinets repeatedly, is full of energy (ie: running and constantly stays moving),takes 1-2 hours to calm down and go to sleep, cries at the sound of rain hitting the roof and motorized carts at the store, and many other little things. I know he has some sensory processing issues, but we are still waiting for an OT to come in our home. He also has been on a waiting list for another OT in Hartsville for over 7 months. I am anxious to get these therapies started, hoping they will help Connor tremendously. We are also on a waiting list for a developmental pediatrician who deals with preemies and developmental issues. While I talk about lists, he is also on another list for a care evaluation ( which is an Autism evaluation). He scored at high risk for autism on the M-Chat screening that his EI did. The CARE evaluation takes around 6 months to get into so we decided it wouldn't hurt to get on the list. If the time comes for the evaluation and he doesn't need it then great, but if he does then he already has a slot. We are not really sure what to make of all of his quirks: is it preemie related, due to all of his constant health battles... the list could go on and on. Regardless, we love Connor- he will always be perfect in our eyes and we are willing to do everything needed to make his life easier.

Please continue to pray for my dad and mom. Dad has his last day of radiation today in Charleston. He has completed 6 weeks of radiation and 2 rounds of chemotherapy. He has lost alot of weight, hurts pretty bad, very tired, and hates being away from home. We are hoping and praying he will be back home soon and that his recovery will go smoothly!



Ok....be on the lookout for the birthday party pictures soon! Gaby's (Kennedy's mommy) mother offered to take pics at the party since she said she needed some practice with action photos! And with 14 children running around, I hope she got plenty of action practice! ;) I can't wait to see the pictures!