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Thursday, May 19, 2016

Eating Real Food By Mouth!! - Adventures in Tube Feeding

Mr. Boy had his last day of Preschool today and this year was no less incredbily life-changing as the last school year. From the very first day in August, he has been different. He started eating food!!!

A little reminder:
When Mr Boy was 3 months old, he had severe reflux and was losing weight. The doctors gave him a feeding tube and that was that. For the first 2 years Mr Boy continued to projectile vomit his feeds an average of 10 times a day. We tried every specialty formula on the market to no avail. At age two we started a Blended diet of simply blending up real food and putting that in the tube and the vomiting immediately decreased to 5 times a day and for the next two years it decreased until last Spring (2015), when the vomiting completely ceased.

Wore this NG tube for two years
taped to his face before getting G-tube
directly in his stomach which is what
he has now.
He was hooked up 24 hours a day, so Dave made this platform so Mr Boy could drag his formula and pump around wherever he went since he was too small to carry it on his back.
Years of vomiting and not wanting to swallow food for fear of vomiting, left him a little too scared to swallow solid foods. But August of this year, Mr Boy started his second year of preschool and happened to be in the one class that eats lunch during preschool. I was a little annoyed at first, because I feed Mr Boy at home in the tube anyway and now 30 minutes of his 2 hour 45 min preschool day would be wasted on a futile activity. But I was WRONG. It only took 2 weeks of sitting and watching his peers eat lunch while he sat there, to make him motivated enough to start eating like never before! Up until that point, he could only nibble and swallow things like crackers or "meltables," but he would not swallow things like veggies, meats, or really any "real" food with nutritional value. But this year, preschool motivated him to try new things and eat real food!!!

I have to take a moment to be real honest, and I know this will sound crazy, but despite how deeply I loathe that tube, part of me began to dread the final process of getting off the tube because I knew it would mean a lot of extra work.  Even though logic tells me that once Mr Boy can chew and swallow solid foods, we could be done with the tube and let him thrive. But it's apparently not that easy. Since eating on his own, with me still giving tube feedings at night, he lost weight. He just does not have enough of an appetite to eat enough food on his own and grow, even though he can currently chew and swallow anything. So we are in a delicate dance… adding a little extra food through the tube after every meal, but not feeding him so much extra that he's too full to eat on his own. I love dancing, but this dance is tricky.

Several specialists have been working on the appetite issue this year with different drugs, routines, and ideas and Mr. Boy will be starting a Feeding group with other kids at the Children's Hospital of CO this summer.

As you can see, my neat and orderly way of feeding my child has been disrupted because this kid has the audacity to decide he's finally ready to eat. :)  With 100% tube feeds, I could control everything! I could give him the finest, most nutritious foods and know that he's probably the healthiest kid on the block. I could control calories and know he is getting enough to grow. All of the sudden I have to struggle with those "normal mom" problems like getting their kids to eat their veggies. lol. I never fought that battle because I could shove them through his tube. Easy peasy. This tube way of life, although difficult the first few years, had finally become "normal" to me and a safe routine.

Althought I never, ever thought I would feel it, I was reluctant for Mr. Boy to eat! The Me-from-2-years-ago would slap the Me-of-today for saying such a stupid thing. But I like being in total control of his food! It feels safe. Now I have to sit by and watch my medically fragile child eat things like… chicken nuggets… french fries… ok, and that's pretty much all he's eating every day right now. Haha. But that's painful… oh so painful. :) But more than that, his appetite isn't "normal" so I still must feed him in the tube and guess at his calories so he continues to grow and doesnt fall too much behind. It is tressful at times when I feel responsible for his growth. All that being said,  the immense JOY of being able to sit at a table with my son and have him eat what everyone else is eating, far outweighs my worries. AND, when I remember to lay my worries at the feet of Jesus and trust that He is watching over Mr. Boy and that He loves him even more than I do, then I can relax and know he's in the Lord's hands.

At this point I'm over my silly pity party and am thouroughly enjoying seeing Mr Boy try new things and eat "normally." Mr Boy will eventually eat all his food by mouth. And on that day, that glorious, blessed day, that the doctor decides to remove the tube and let that hole in Mr Boy's tummy close for good…  we will certainly throw a party. But in the meantime, we will rest in the peace that only comes from the Lord (you know, the kind that surpassess all understanding) :) and enjoy this season of discovering new foods!


We are so grateful for this 2015-2016 school year and Mr. Boy's incredible teachers!

Wednesday, March 30, 2016

When Your Child's Identity is Stolen

Something happened about 2 years ago now, but I'm just now getting around to talking about it. It was creepy, but I realize talking about it could help others. Also, it is the reason I have not posted much in the past 2 years. I have edited all past posts on this blog with a nickname for our son "Mr. Boy" (as my husband lovingly refers to him) and deleted some posts, as well as some information. It's easy to over-share when you're griveing and want sympathy and attention, but this is Mr. Boy's story to tell, so I'll be posting fewer details about him and more general updates. 

Here is the story: I am in a few private groups on Facebook created just for people with Mr. Boy's condition. They have been a major source of comfort, widsom and friendship throughout the years. One day I noticed one of the mothers in this group, "Shonaleah Gillen" had my own son's picture as her profile pic. It appeared she was claiming him as her child. I noticed her in another one of the groups as well when she introduced herself. She had a different fb page just for her supposed son named "Ashton," called "Buddy-Ashton My-Miracle" where all the pictures were of my son, taken from this blog.  She even has a blog where she claims to have a son "Ashton" (creepy right?) with his condition and took bits and peices of our story mixing it with fiction, with my son's pictures posted there as well. It was like reading a middle schooler's plagarized essay, knowing it was copied and the way they copied it shows they have no idea what they are talking about? Like that. It was extremely sickening and scary to see. Legally, unless she is asking people for donations in her fake son's name... there isn't much I could force her to do. 

But this is what I did do: I contacted the administrators of the Facebook groups, to have her removed. I sent her firm messages asking her to remove my son's pictures on both her fb pages and on her blog. I flagged her pages on facebook. (I couldn't take any action against her wordpress blog because there were no copyright infringments). I called our local FBI office and they actually put me through to an agent who took all the info down and sent it to their cyber crimes unit so that they can make sure she isn't scamming people with my son or anyone else's children's pictures and story. Stealing my son's story and identidy just to get sympathy is sad and sickening, but I really wanted to make sure she wasn't trying to raise donations for her fake child, scamming people online. 

Update:  The FBI looked into it, and will watch her so they can catch her if she is or ever does start scamming people. She was removed from our private FB groups, her "Buddy-Ashton My Mircale" facebook page is gone, her personal FB page is gone, but unfortunately the blog remains up, with my son's pictures. 

It was clear she is a sad woman seeking sympathy online for having a disabled child. I get it. the sympathy and attention does feel good when you're depressed and could get addicting. Please join me in prayer for this woman, as it's clear there are deeper issues at play in her life. Someone who would take another child's identity as their own and seek false sympathy, must have been something horrible to get to that place. I hold no ill-will towards her. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. -Ephesians 6:12

This is a sad reality of putting our children's stories online for the public to see. It is hard to balance privacy and being a help to others like us, but please let this be a reminder to all of us that the internet is a scary place, so think twice before you post something about your child.  They may wish you never shared some things when they are old enough to hold us accountable for the things we say about them online. Even our private groups are not immune to crazy people... let us tread lightly and write wisely about our children. I love you all, and hope this doesn't happen again to anyone else! 

Friday, June 5, 2015

PTSD and Dizziness -How we recently discovered Mr Boy feels dizzy and how far he has come.

It's a bit ironic that one of my last posts was entitled "Cracking the Code of Fear." I boasted that we were finally figuring Mr Boy out and conquering his fears and need for control stemming from his traumatic/painful medical events which rendered him terrifyingly out of control. But what we learned then, compared to the facts to which we have just become enlightened, pailes in comparion.

In March, David "randomly"met or to put it more accurately, "divinely" met a PTSD therapist at work. They chatted about Mr Boy and Dave mentioned that when Mr Boy gets upset about things, he says they are, "Spinny (like spinning)." She replied, "oh yeah, he feels vertigo." This realization blew our minds. The first thing we did when Dave got home from work was simply ask the kid, "When you say things are 'spinny' is it because you are feeling dizzy?" His answer of "Yes, spinny and dizzy like a carousel," broke my heart.  We had recently been brushing off his "spinny" comments and telling him, "No…. that thing is not spinning. You are fine, it is not hurting you." A flood of apologies and hugs followed.

He never had the language to explain it all to us, and only in the past few months had he been using the term "spinny" so we never put it all together.

After 2 years and LOTS of therapy, medicine and work on our part at painstakingly trying to desensitize Mr Boy to his fears, we finally discovered just how valid those fears truly were. Sure, we always believed that the fears originated from the traumatic medical procedures and that he was grapsing to control all the unpredictable things in his environment (specifically things that blow in the wind or rock, fly or run around), in an effort to feel safe after so many moments being completely out-of-control while having painful things done to him. And on some level this is still accurate, but suddenly a light has been cast over Mr Boy's inner-workings, giving us a better understanding of his 'fears.'

As soon as we found out about the dizziness, we got Mr Boy into mental health therapy as well as Neuropathy, to rule out any inner-ear issues and as expected, he does not have any. The Neuropathist (who is on sabatical but came in specifically just to work with Mr Boy as she is the child expert), explained his dizziness this way: Until the age of 15, our brains and inner ears are still learning to work together to balance us automatically. As children, a lot of the information our brain uses to balance us, comes from what we see or how we see our bodies within the space around us. In Mr Boy's case, because his body is naturally off balance with his shorter leg/smaller foot, and scoliosis, he already has to tilt his head to be balanced and his brain has extra work to do. When Mr Boy would become upset, in a hypersensetive state, his brain would have a hard time processing the information needed to keep him balanced and if a curtain were to blow in the wind (the very first trigger he ever had) or a noise (not sure how it works, but random noises are triggers as well), this would be enough to make his brain think he was also blowing/swaying, and have a hard time balancing. Thus he would feel dizzy and this would increase the terror of the moment.

It would also increase his nausea. When we switched Mr Boy to a blended diet and got him off the formula 2 years ago, his vomiting decreased from 5 times a day to about once a day, but that once-a-day vomiting still persisted. I knew it didn't have anything to do with what he was eating, but everything to do with his emotions. I now feel quite justified in my thinking.                        
Anxiety and dizziness ---> nausea and vomiting.

It all makes so much sense now. It makes sense why he wouldn't let me dance… why he wouldn't let me hold him during his panic attacks (because I rocked back and forth)… or why he would beg for us to stop the curtins from blowing from the air conditioner.  It hurts so much to know that Mr Boy was suffering in this way for 2 years and we were so clueless. There is so much more I could have done or said or comforted, had I known. But in the Lord's redeeming love, He has made it known now, enabling him to find more healing and process all this out with us. It has certainly lifted a burden off all of us. Now Mr Boy is vindicated and we can be much more sensitive to his feelings and needs.

At least once a day Mr Boy will still say, "mom, take off your dangling earrings, they are spinny," but he has recently clarified that statement slightly with, "I think they will make me feel dizzy." And there is no more fear in his voice when saying it because he knows I am fully supportive. Before, I would say, "You are ok, they are fine, they won't hurt you." But that wasn't the point and I didn't understand.  He didn't have the language to defend himself. But now he doesn't have to.

Since having this new knowledge, I have personally only seen him feel dizzy (and it was obviously terrifying) twice and it was when he was in a very emotional state. All his other daily worries are because he remembers the dizzy feeling, knows the things that triggered his dizziness in the past, and is afraid those items will make him feel dizzy once more.

With advice from the therapists, we are helping him work through this by talking it out which helps immensely. When neccessary, we give him firm pressure on his sholders with our hands and plant his feet firmly on the ground to give his brain extra physical input to know he's not spinning.  And we give him a safe place to go if he is nervous. His room is his safe spot. For instance when Skittle's baby toys make noise as she randomly hits them, he sometimes doesn't like it and thinks it might make him feel dizzy. But we don't want to ban Skittle from playing with musical toys, so Mr Boy excuses himself to go lay down on his bed until he feels better and can come back and play. Last week he started going into the pantry as a safe place as well.  But we already rarely need to utilize these techniques. He has matured so fast it's crazy. And then he runs around pretending to fart on me and I remember he's a kid. :)

Mr Boy has made so many incredible leaps and bounds in conquering the fear of his past triggers since we have known about the dizziness and become more supportive.

One HUGE blessing in all this has been Mr Boy's decreased vomiting. He vomits maybe twice a month since we have learned all this. That was 5-10 times a day for this first 2 years of his life, then 1-3 times a day for 2 years and now virtually no throwing up at all. He is so happy and content with life and his surroundings that his anxiety is almost non-existent and thus his vomiting is almost non-existent.

After only 3 visits, Mr Boy's mental health therapist actually told us we didnt need to keep coming. And after only 2 visits, the Neuropathist told us we only need to see them twice a year to check-in.  Mr Boy has almost no negative affects from his trauma that would be treatable in therapy. They said therapy can only do so much and all the tools they would teach us to help Mr Boy on a daily basis at home, we are already employing.  I guess I needed the therapy process so see how great he's been doing! One year ago today I would never have dreamed of such a blog post. But for the past few months Mr Boy has come a long way toward complete PTSD healing. We continue to pray that there is no recurrence of issues later on in life, but will be poised to take them head-on with this new knowledge and with an army of prayer warriors behind him. Praise the Lord!


Through processing this all out with Mr Boy, he has begun to bravely go where he has not ventured before and play with things which were dizzying triggers in the past. All these new things in the past few months: 


He now bathes every day!!! And last week I was allowed to add bubbles! Huge steps!!
Water has been such a HUGE obstacle his entire life and now he's a tadpole.


In our kiddie pool in the backyard. We had this pool 2 years and he is finally happy to get in it!


 In physical therapy 3 weeks ago, I mentioned to his PT that the only thing Mr Boy still would not do, is swing. He just knew it would make him feel dizzy so he refused. His PT took that as a challenge and asked Mr Boy to hop on this swing. Mr Boy was scared and tense, but agreed to get on as long as he didn't move it too much. After a few minutes, Mr Boy said, "Hey! I don't feel dizzy! I want to go faster! Mom, I want ride a swing everyday!" 




On our way out of therapy that day, the PT also got Mr Boy to try out a tire swing, the epitome of dizziness. Mr Boy said, "I feel a little dizzy, but the good kind of dizzy." Amazing!


So naturally, the first thing we did was go to a park and swing!


I could go on and on and on and on about all the new things he is able to do and all the triggers which have been rendered harmless. The simple fact that he went to Disney world and enjoyed it with no fears, is a true testament to how far he has come. Even today, Mr Boy told me we should go to his playroom and put all the batteries back into his noisy toys, and we had a dance party!

We always thought Mr Boy was just going to be the very anxious one in the family, and carry on the tradition of scaredy cats in our family line (me included), but this is not the case. He is the most courageous boy I have ever met and will always be my inspiration. The Lord bessed him with bravery, at which I can only marvel. We could not be more thankful to the Lord for his mercies. It feels like we literally got our son back.

Wednesday, May 20, 2015

The Blessing of Preschool

Aside from our move to Colorado, Preschool has been the biggest blessing in Mr Boy's life. Very quickly, Preshcool succeeded in "curing" him of many of his fears outside of the home. But little by little, the results slipped into our home as well. Woo Hoo! Felt like a rainbow of hope and joy, which we could see outside our window... suddenly burst into our living room and illuminate our lives. :) Seriously. Mr Boy went from being nervous and vomiting when other kids approached, to being completely at ease in their presence. He used to have panic attacks on the way to toddler music class or play groups where he knew I would not even leave his side. Thus prescool looked like an insurmountable mountain between Mr Boy and a successful elementary school career. Thankfully Mr Boy qualified for therapies in school, based almost soley on his PTSD symptoms and thus had very helpful therapists by his side to help him climb to the summit of this preschool mountain.


Ahem, Ahem... we have also heard he's kind of a ladies man. Holding hands with one girl one week and another girl the next. Slow down boy!


Mr Boy has a newfound confidence and independence. I never thought I'd be able to say "Mr Boy" and "independent" in the same sentence. Before preschool I couldn't even go into another room in our home, without my sweet lil boy screaming, "Mommy! Where are you?!?!" And running to be by my side so he was not alone.



We are rejoicing and praising the Lord for moments like these. It took months and months, but he finally joined in with the daily end-of-day dancing. Until recently, he would cry on the way to school because he was afraid the kids would dance and he would not like all the motion. But here he is dancing!



We are so proud of this little man, and so blessed to have Mr Boy in this Preschool with the therapies he has.  As this school year comes to an end this week, we are already looking forward to Mr Boy's second year of preschool and excited for all the Lord has is store for his life.

Friday, May 8, 2015

The Club Foot Journey

Mr Boy's club foot was repaired at birth, but it recurred slightly by the time we moved, so last October we embarked on another season of "fixes." We've been told to anticipate the possiblity of more of these seasons in the future, but we are resting in the hope that will not be the case. 

Mr Boy had 3 casts over 6 weeks, each one turning his foot a little more outward.



After the casts, on December 16, 2014, Mr Boy had surgery to perform a tendon transfer, (drilling a hole through his foot bone and pulling one of his tendons through it to the other side so his foot will pull the other direction) and an achilles tendon lengthening to give him more range. 

Prepped and ready for surgery
2 more casts after the surgery to facilitate recovery
8 weeks later, Mr Boy got his permenant orthodic which he will wear for the forseeable future to prevent his foot from turning back inward:

Superman design
 Mr Boy started Physical Therapy shortly after his foot healed from surgery. 

Balance beam
Climbing the ladder to get toy cars hidden in the  curtain



We put a bouncy house in the basement, which has been very helpful in strengthening Mr Boy's muscles and balance.
It was purchsed strictly for theraputic reasons of course. :) 
Practicing his therapy exercises at home



Here, Mr Boy is practicing his therapy exercises (using a 2x4 as a balance beam and a cutting board on top of a pillow as a balance board, on which he throws toys into the center of the boppy pillow)

Finally conquered the chain ladder! 
Newfound bravery and confidence
Mr Boy on the balance beam at Gymnastics
Mr Boy also started Gymnastics, which he loves and will play soccer this summer!

All this therapy has been doing wonders for Mr Boy's confidence, physical strength and balance. It's been exciting to see him take charge of his own therapy and see his pride in his own accomplishments. 

Monday, December 8, 2014

Cracking the code of FEAR

      We are slowly but surely figuring this kid out. He's got some pretty interesting fears, but as he gets older and more reasonable, I can sometimes reason with him... at least when the fears are, well... somewhat reasonable. :) All his fears root back to control. When Mr Boy feels like a situation or thing is unpreictable or uncontrollable, he gets upset. This traces back to all the times he was held down in the hospital and had traumatic procedures done to him outside of his control.

       Now I know we told you that when we moved to Colorado, all Mr Boy's fears melted away. Well it seemed as such. But when Skittle was born, Mr Boy lost a lil sense of control and some fears came flooding back. They were still no where near as bad as before, but nevertheless, some fears returned.

      One fear that has never ceased to persist, is that of water. I tried using reverse psycology on him all summer to desensitize him to his fear of water. I would take him to the fountains at the outdoor mall and say we are just going to watch... not get wet. That took the pressure off, gave him back the control and allowed him to choose when he wanted to get wet. We went somewhere with water at least once a week. I also set up a pool in the backyard "just to clean it off." Here is a video of how that went:





      Although we made huge strides toward liking water this summer, Mr Boy still breaks down in tears and starts to throw up at the thought of a bath (we sponge bathe only) and sometimes even the thought of a clear cup where he can see the water moving - wont touch it. Twice in his life we successfully got him in a bath only to have him refuse and panic the next time. Last week however, he saw his sister enjoying a bath and asked if he could get into the baby tub. I said "YES!" as any mother who has never been able to actually bathe her child would… and quickly tossed Skittle from the infant tub (I laid her gently down but 'tossed' is more exciting), and got Mr Boy squeezed in before he could change his mind. He enjoyed a few baths while squished into the infant tub and now will only play in the baby tub from the side of the tub, where he is safe and dry, but even that is still a gain. "No bubbles and no water in the big tub," as Mr Boy says, but at least he is playing in water with his hands in a baby bath. Win.

But we have also gained a lot of ground in other areas:

-At some point this summer, Mr Boy was frightened while playing on his ipad, which he has loved since he was 2, at which point he decided it was evil and didn't touch it for 2 months. I had an epiphany one day and suddenly remembered the incident which brought about this new fear. He had an app open on the ipad which played music in the background. Mr Boy was ignoring it and playing with cars on the floor when he noticed the screen was black (it had gone into sleep mode) but the music was still playing. (This was unpredictable and seemingly out of his control) That freaked him out and he was never to touch the ipad again. I recounted this incident to him and told him "This is why you are scared of it" (he was never able to tell me why he was afraid of it before). I said, "Let me fix it for you," and proceeded to turn the ipad off and on again, "fixing" the problem and then explained why the ipad acted that way, and bam! He has played with it every day since.

Basement Playroom
-Also, since we moved into our home in May, Mr Boy has never played in our basement playroom. All his toys are in there, it's finished and has tons of natural light, so it's not your typical scary basement scenario. Regardless, I just couldn't get him to play with me down there or mention it with him starting to throw up or cry. However, a few weeks ago, I had another epiphany: He got scared once when we were down there for a few minutes gathering toys to bring upstairs because one of the baskets of toys got bumped and a toy started making noise. (This was again, unpredictable and seemingly out of his control). So he and I ceremoniously took the batteries out of each and every toy in the basement and bam! Now he loves it down there!

-Mr Boy also spent the summer in our living room or front yard. He very much disliked the thought of going in the back yard and would throw up (he's an axious vomitter, as kids who suffer from severe reflux can be) and cry if I mentioned it because "there were bugs." This he told me this straight up. We all know there are just as many bugs in the front yard as in the back, but some bug scared him in the backyard, so it was off limits, regardless of logic. This was very sad for me because part of the reason we bought the home was because of the large backyard. We have a tiny front yard, and I think the neighbors were starting to think we were "those weird neighbors" who were always out front. Once fall hit, I was able to honestly tell him that as it got cooler, there wouldn't be so many bugs in the backyard, and bam! Now we play back there everyday!

-And at preschool, Mr Boy never played on the playground. He would walk around on the basketball court while all the other kids played on the playset on the playground. He wouldn't tell me why. But one day last week (3 months into school) he finally walked up onto the playground and went down the slide! Slides have always been a deterrent for him, but he overcame!

      So although he still has some funny fears, at least he is finally able to be reasoned with to a certain degree. He is better able to process his fears and see that they are unnessasary or at least put them to words. This is a new refreshing season. Thanking the Lord for every victory and "epiphany" and for giving us wisdom and insight into Mr Boy's heart.

Wednesday, December 3, 2014

New Colorado Doctors

It took nearly 8 months, endless medical history request forms, 100s of pages of New Patient documents, and countless hours on the phone with our insurance, hospital appointment schedulers and home medical suppliers, but we finally got acquainted with all Mr Boy's new doctors here in Colorado. Here is a list of all those doctors and their thoughts on the future:

1. Pediatrician- Partners in Pediatrics
2. Gastroenterology - Jason Soden, Children's Hospital Colorado
3. General Surgery- Rebecca Jacobsen, Children's Hospital Colorado 
4. Orthopedics - Gaia Georgopoulos, Children's Hospital Colorado
5. Orthopedics - Travis Heare - Children's Hospital Colorado
6. Neurosurgery - Todd Hankinson, Children's Hospital Colorado
7. Urology - Duncan Wilcox, Children's Hospital Colorado
8. Bowel Management - John Bealer  Children's Hospital Colorado
9. Pediatric Oral Feeding Clinic at Children's Hospital Colorado

Medically, Mr Boy is doing AMAZINGLY WELL.  All his new doctors said the same thing…"He is just doing so well for a child with his condition." They were all blown away by his health.  Praise the Lord!!