Little Clouds

First published on a friends blog several years ago. Decided to share it again. 

Father’s Day 2010 was quickly approaching.  At the last minute my sister, brother, husband and I decided it would be great to take my parents to the beach for the weekend.  The weather was perfect, hotel beautiful with ocean front rooms and we were all together, including my sister’s kids and my baby boy.  We just hung out and enjoyed each others company, savoring every moment and laughing as much as we could.

Sunday, Father’s Day, dawned bright and beautiful.  I had to be up to see the sunrise and photograph it in all it’s glory.  After all, how often do you get a chance to sit on a balcony in your pj’s and watch the sunrise on the ocean?  It was glorious!  Dolphins frolicked, seagulls soared and dipped catching their early breakfast, a shark or two made an alarming appearance, and a few early risers roamed the beach basking in the beauty with me.  There was one problem, I couldn’t see the sun.  Clouds hung in a low curtain blocking the sun that I knew was peeping over the horizon.  The rest of the sky was gorgeous but the clouds refused to move and give me full satisfaction.  I was disappointed, but oh well, it was still pretty, right?

Later that day as we lingered before we had to head out Mom mentioned that she and Dad had also sat on their balcony and watched the sunrise.  A slow anger started to build inside me.  At first it was a cry of “It’s not fair!”   Over the next few weeks it grew into “How could You! Don’t You care at all! Are you even there?! Why not this one last time?!”   You see, that February my Dad had surgery and they found an aggressive cancer that had quickly taken over him, the week before Father’s Day my Dad was told he only had a very little time left with us.

One week after my Dad saw his last sunrise God called him home.  I didn’t question God’s goodness or sovereignty over taking Dad.  I knew He had plans and could see the big picture I could not.  When it came to that little cloud though, I was outraged.  How could a God who loves us, cares about us and the day to day matters of our lives not do something as simple as removing a tiny cloud so that a dying man could sit with his wife and see the most beautiful sunrise possible?!  A cloud far off on the horizon would be a simple enough thing to shove aside if God really cared.  Over the next few weeks I was so upset by this that I couldn’t even talk to God.  When I heard all the verses people would quote about His love, mercy, care, etc., the cloud would come to mind and I would think “Really? Then why not do something as simple as move a cloud?!”

A month or so later I was sitting in a Dairy Queen drive through, my mind blank and feeling low.  While waiting in line I heard His still, small voice say, “So he could watch.”  Suddenly my mind was flooded with images from that weekend.  Dad staying in his room most the time due to the pain and heat.  Dad constantly walking over to the curtains, peering out, then closing them because it was too bright.  Waiting until evening to go down to the deck and look at the beach because the sun was behind the buildings.  The light hurt his eyes.  He had avoided it all weekend.  God so wonderfully and mercifully gave me the understanding that I so desperately needed and didn’t think I would ever get.  The cloud was for Dad.  It was there so he and his bride of 34 years could watch the sunrise one last time.  To block the brightness that would have sent him inside.  God cared enough to hang that curtain there and then when I railed against him like a child, to gently show me His goodness after all. 

There are many little clouds in life. We come up against them regularly.  They seem like insignificant things that God could have prevented or done to make life go the way we think it should.  They may be bigger things that we beg God to do or remove.  Usually we don’t know the “whys” we just have to keep on trusting that His ways are best.  Sometimes He shows us why and it can, from then on, serve as a reminder that no matter what, in whatever the circumstance, He does care and He is good.

Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honor and comfort me once again.  ~ Psalm 71:20-21

"When we lose one blessing, another is often most unexpectedly given in its place." 

— C.S. Lewis

Slow & Steady

Two weeks went fast. It went well but we are very glad it's done. The short of it is that he is now eating thick-dry puree, wet-fork mashed/puree, and an easier food at each meal. The biggest improvement is that he is moving the food around in his mouth and making chewing motions. Yesterday and today (final day) she snuck in some pieces of roll, muffin, and brownie. Teeny bits that were sometimes with the puree and sometimes just plain. For the most part, if he was distracted enough, he did well with it and worked it around and chewed a bit. For me the highlight was today. The therapist put a bite of carrots in his mouth then left to grab something. As soon as she did he worked a carrot bit out of his mouth and grabbed it. I started to tell him not to but he smiled and popped it back in. Then proceeded to shock me by chewing it up with exaggerated gusto! I cheered and egged him on. He was about to take a brownie crumb when she returned. The game of eat while she's gone was over hahaha!!! Stinker!

The Dr saw us Wednesday and explained that with his muscle disorder his chewing muscles are fatiguing fast. So we need to maintain the puree mixes while he builds stamina and strength. After 4 to 6 weeks we can make it more challenging again. So that's the plan for now. We will be doing outpatient feeding therapy there every other week to keep up with it. 

Slow and steady wins the race. Right? I hope so. 

Thanks so much for your prayers through these two weeks. RoBear and I are worn out and ready for a bit of rest, but it went so much better this time!

Second Times A Charm?

We will be heading in for a second round of the AP Feeding Difficulties Center intensive program. When RoBear's GI heard about him eating the few bites of cake, he thought perhaps we need to give it another shot - especially since we've been trying to get into their outpatient program. In order to do the outpatient they want a 2 week reboot. Hopefully after we finish this off we can get into regular therapy.

We start Monday and this time it will be two weeks instead of four. We are very grateful for that. It's also only four days a week instead of five - yay! 

So prayers please for all of us but especially RoBear. Praying big things for him. 

Before he was born I painted this in his room:

Tonight, running through Hobby Lobby I saw the fuller version. 

The second part resonates with me now as much as the first half did when we had him. It's a daily giving over, or should be. I try and do it on my own forgetting that God gave him to us and will carry out what He has begun. He can bring healing if He chooses, He can guide us either way. And as much as God loves my little boy, more than I can imagine, He also loves me. He will not leave us out to dry, hanging in the wind. He will gather us all up in His loving Daddy arms and comfort and love on us - if we let Him.

So, in asking for prayer for the following weeks yes, please pray that Ro starts eating or tasting solids, but please also pray that I can let go of trying to do this in my power and rest in my Daddy's power, love, affection, comfort, and blessings.

Good night :)

This and That

Summer :

• Lots of sick, swimming lessons, school break, therapies as usual.
• Eye Dr appointment since we were seeing his eye wander up when tired. Wait 6 months and see.
• Sick = stale mate in feeding progress.
• Evaluation with AP Feeding center outpatient therapy. Accepted.
• Still waiting for a slot to open to continue eating  progress.

Fall:

• GI #2 changed one reflux med to a stronger one to see if that would help him eat better (End of August)
• Started 1^st grade!
• Started with our co-op! The boys LOVE it!
• Therapies continuing per the norm.
• Wonderful family mini get-away to the beach.
• Robbie’s behavior and overall self trending downward.
• GI #1 appointment, I was concerned about the med he had been put on by GI #2,  reduced reflux med but stayed on it. Added an appetite stimulant.
• By mid-October it’s obvious change is needed. Hard decision to drop OT/ST for now in order to have more time to focus on getting school done and hopeful for better behaviors.
• After long discussion with the magical OT Miss Tiffany we decided the medicine is probably to blame for his awful behavior. Quick call to Pharmacist confirms it could have him in pain and generally screwed up.
• Stop that med and go back to old one.
• Three days later and already seeing improvement. Poor baby!
• Eye dr appointment this morning. Diagnosed with Hypertropia. Of course his is a “unique” case because both eyes fixate well individually but the right will randomly go up. Typically it would not fixate well either. When his right eye wanders up the brain shuts it off and just ignores it, he does not see double just doesn’t have depth perception or peripheral vision at those times. Patching won’t fix it. Giving it another 6 months to see if it gets worse. Have to track it. She said he will probably need surgery on both eyes to correct it.

Other:

• While much of this sounds like a bummer a lot of fun happened in between sickness and such. The pictures are a bit of proof ;)
• In the midst of this we paid off the student loans! House is all we owe on now! Freedom feels good.
• Looking forward to the holidays :D

Prayers:

1.       Meds work out.

2.       Get into feeding therapy.

3.       Eye improves. 

The Feeding Difficulties Center

I know there are many questions and vague musings about what the Feeding Difficulties Center is and how it helped. Unfortunately I can’t easily sum it up or even explain it well. Not even the Center can do that!!!! If we’ve learned anything it’s that there is so much we will never know. It’s far more complex than we imagined. Also that even fast progress is slow.

I am writing this post for two reasons. One is to inform family and friends on how it all went and where we are now. The other is for families like us who scour and search the internet looking for any info we can get our hands on that will tell us what the heck they will do in the feeding intensive and any and all other things concerning it. I could find only one post that started to describe it but the author, overwhelmed by life I assume, kinda quit part way through and never finished telling the world about their experience. So for the second set of people, who will hang on each word like it’s necessary for survival, this will be a lengthy, more detailed post than usual. So, if you are family and friends don’t feel bad for scanning. If you are a parent in the trenches, read on and know my thoughts and prayers are with you as I write. It’s not an easy path. It’s for these families I will also lay out some of the hard stuff, emotional and physical, far more than I typically do. I am not looking for pitty or a pat on the back. Just want people heading into the same situation to possibly be a bit more prepared than we were.

Feeding History Summed Up.

Robbie aspirated from the start and had bad reflux. When we started rice cereal he would throw that up too. When we tried to go from puree to solids he would just gag and throw up. He was unable to drink from a bottle or cup. So by one year old he entered feeding therapy. For somewhere between 5 and 8 months of his second year he threw up at every single meal. Every single one. Over the next two years he learned to touch and smell foods without gagging and throwing up. He also learned how to drink from a straw cup and to tolerate a variety of purées. Then we hit a wall. 

When we took him to a gastroenterologist he was diagnosed failure to thrive and we were told about the feeding center. It's quite a process to get in. They had him do endoscopes and other tests and therapies, medicines for reflux and appetite, dealing with constipation, behavioral therapy. So many hoops to go through so that he will be as successful at the center as possible.  All the while attempting to get insurance to pay on top of it. During this we were able to transition from baby food to puréed table food but no further with actually eating solids. He was also diagnosed with hypotonia and autism during all of this. 

The Feeding Difficulties Center

We were set to enter the center in September of 2014 but a few weeks before it started insurance said they were not paying since he had used up all his OT visits for the year.

So it was pushed to early 2015.  In January we went to an ENT to check out his hearing and sinuses. They ordered a sleep study and found sleep apnea. So the tonsils and adenoids had to come out delaying the feeding center once again. So December of 2015 we finally made it in!

While there I started keeping a record of the days but stopped by day nine hahaha! So I will insert a few of those diary type entries but will leave most out since after a few days they were basically all the same.

Every Feeding Difficulties Center is different and uses varying methods. Fortunately ours uses positive reinforcement and did things along the same line as his other therapists. This was tremendously helpful. While there we were working with an OT who does the feeding, a social worker/family counselor, nutritionist, Dr’s, nurses and other staff.

Basic info

Robbie had three meals a day, five days a week there, for four weeks. They only take two kids at a time and they do not eat together. We had the second time slot so he had breakfast at 9am, lunch at 11:30, and dinner at 2:30. We had to bring small containers (4oz glad worked best) for them to send home leftovers which we then fed him in the evening when we ate dinner and on the weekends. So essentially he had 4 meals a day. Between meals they had a play room available on the same floor. We also had a private room for daily use. That was wonderful to hold all our stuff (his changes of clothing, toys he may have brought, medicines, etc), had a private bathroom and was great for nap time. We could not leave things overnight in there though since they share the room with the sleep clinic. There was also a playground type area on hospital property.  We also had use of a fridge and kitchen to keep the parents food. For families who don’t live within driving distance they use the Ronald McDonald House when housing is available. There was an orientation but we were not told this until the week before and were already scheduled to be on vacation during it. We would’ve gotten much of this info then.

A day ran like this.

Hour commute to hospital. Hope to find spot in parking garage.

Get gear and Robbie into and through the hospital (not easy when there’s a bunch of fun stuff to pass by!). Get security badge. Up to the 7^th floor. Wait for someone to see you to buzz you in.

Unload stuff in kitchen, get key for cabinet where you can store stuff overnight, unload meds in feeding room, unload stuff in room. All while trying to keep him from running off at any point to go to what or whomever has caught his attention!

Mondays they weigh in and usually a Dr or PA is there to check him over.

The Breakfast! This lasts an hour.

On to playroom, a bit of school work, play, maybe a movie.

Lunch! Another hour.

Then I eat while he takes a rest. We then go down to the playground to run out some energy.

Dinner! Another hour or so.

Usually the schedule is running late all day so we would get done about 4, pack up and get on the road.

5pm and home to Daddy and Henry! Play then bath.

Dinner time again! We had to log everything food, time, setting, behaviors, who fed him, in a folder they gave us and had to take it back each day to go over it at the center.

Of course when Daddy went with him the down times were different and more fun with walks outside and such. Also Mondays they do not feed dinner so we were able to leave earlier and went to the Science Center a few times for some fun.

They do not allow siblings at the Center so Chet worked from home for the month taking Robbie to the center one day a week and kept Henry the rest. Praise God for his ability to do that!!!!!

Exhaustion

Now I know this is not a busy day. Not crazy. It’s predictable. Somehow though it is pretty much the most exhausting thing I’ve ever done. No clue why but I could drop to sleep at any moment throughout the whole experience. I slept better that month than ever in my life! I came home each night saying I was exhausted and didn’t know why. When Chet came home from his first day there it was apparent he now understood what I meant. It just wipes you out. It’s probably the constant emotional and mental tension. Here is an example, though it did get better quickly in many aspects there were some that just stayed hard through the duration.

“Day 2

Wow. This day is rough. Gagging and throwing up right away, crying, resisting, etc. it's so hard to watch. He will catch on quick. I know he will. Just have to keep reminding myself of that. We've chosen this course and pursued it for three years. I have to give it a fair shot. I just want to smack the therapist and grab him up, hug him and run for the hills. She is doing her job and she knows how. It's not as bad as it seems, it just feels awful because my heart is so tied to him. Probably harder on me than it is on him. She had me leave the room so I am watching on the closed circuit camera. I know I'll be sobbing tonight but for now I have to keep a happy brave front. It's his birthday after all!”

Now the gagging and throwing up did not persist. She quickly learned his limits and triggers and started pushing to but not beyond the limit, while teaching him how to work through the gagging that happened so it wouldn’t turn into throwing up.

So what did they DO?

Each child is different and has his own strengths and weaknesses. For this reason they do not themselves know exactly what to expect and so they don’t tell you! They have goals but it was never outlined for us. Some of his weaknesses are sensory aversion, weak gag reflex, years of eating being unpleasant due to reflux. Some of his strengths are that he is a fast learner, laid back go-with-the-flow happy disposition, love of people and attention. When we went into the center all he could eat was smooth puree. Like stage one or two baby food smooth. Nothing stringy or textured and certainly nothing thick. Coming out of the Center he is eating moist fork mashed foods (ie muffin mashed with yogurt and some milk), thick puree and textured puree. Now we hoped that he would come out at least taking bites of some foods. We did not realize what lay between. We thought we were getting from A to E. We are really getting more from A to Z.

“First meal today went surprisingly well. Watched his videos through most of it. Minimal resistance. The food is thicker and dryer than he is accustomed to and they put it in his cheek so he is learning to move his jaw and tongue and teeth to work the food back. 

Second meal was about the same. I'm relieved he is actually getting food in him today.

Third meal a bit harder but did well.”

Robbie flips everything from the front of his mouth straight down his throat. So they were having to teach him tongue lateralization (which we have worked on prior), moving his tongue from side to side while eating. How to sweep food from his inner cheeks and off his teeth with his tongue so food doesn’t build up in his mouth. Things most people automatically do and never once think about he is having to be taught. We were also working on moving his gag reflex even farther back. Essentially the constant consistent practice, along with Dr supervision to watch constipation, weight and other issues, speeds up the rate of presenting harder foods/textures. They know how hard to push, how to deal with issues that pop up, how to prepare the food, when to pull back, what to watch for that he may or may not be doing that is working against himself. So where the kid starts and how well he cooperates, etc. determines how far he goes. The OT did not think he would get as far as he did because the resistance she saw in the evaluations. Fortunately he complies much quicker than she estimated he does. She also said that she believes if they had another 2 to 4 weeks he would’ve been taking bites of soft solids. Unfortunately they do not have the staff to pull that off! So he did better than they expected but not as well as we hoped.

What now?

That leaves us with doing our best to continue on at home with the guidance and help of his ABA therapist. She was able to attend a few sessions and meet with them to be sure we are on the right path. A lot goes in to preparing his meals now and into feeding him. Because life is life and there’s a brother who demands attention too, sickness that pops up, special occasions that we make the food easier to go faster or at someone’s house, the intensity isn’t as high. Also because I stink at pushing him in this area. Chet is waaaay better at it. My fear and softy heart get in the way. I’m learning though. Hopefully within a few months he will be taking bites. Prayers!

Robbie did fantastic throughout! He loved seeing his new friends every day and especially loved all the Christmas decorations everywhere in the hospital. The huge trees and wreaths were his favorite. Even so it was exhausting for him as well. He was much more worn out in the evenings and on weekends than usual. When he was fed up with someone or something or simply over the day he would start asking for his two favorite “things,” the Science Center and his regular OT Tiffany. Every time he was up was upset with the ladies at the Feeding Center he’d start saying “I want Tiffany!!!!” It was sweet J Because we spent every day there he didn’t get to see her until after the new year. He is happy to be going back!

One thing that was particularly helpful for me to see was how much they used distraction to help him eat without gagging. At first we used the ipad with videos he loved then moved to tons of attention and “games” to keep him occupied. As long as his mouth is doing what it needs to be he is learning the motor memory to continue improving. He doesn’t have to be paying total attention to eating. I hadn’t thought that at all.

One thing that was particularly hard was seeing him in the chair they mostly used. They started him in a regular little chair at the table but he would not stay in it and kept turning his body away to avoid the food.  Since this is not an issue at home it is not something we wanted to waste time working on at the center, so on day three they put him in a chair with lap belt and a chest pad that buckled to the chair so he was held pretty well in a straightforward position. He calmed almost instantly when put in it, seemed to like it actually and cooperated much better. It’s the type of chair you see severely disabled children wheeled around in. Sitting back watching him in this chair being fed pureed food by a professional at 6 years of age reality smacked me again and it took everything in me not to break down sobbing. There was no denying in that moment that he is a special needs kid. In spite of his diagnosis I tend to forget or doubt that he is. You just live life day to day and work around what needs to be, see the progresses made and rejoice in it. And it’s life. It’s normal for us. Then we are suddenly jarred into the rest of the world by seeing him with other kids his age, something we see on TV, a comment made, or this time the chair. It’s hard. Hard to know he has to work so hard at what the majority of the earth takes for granted; hard to see what we miss out on, what he misses out on; hard to not know if he will be able to lead a typical life at some point. Chet and I both got tripped up emotionally by the chair, it just represented this whole journey we’ve been on.

Many emotions were stirred in the midst of Feed Center: nervousness, anxiety, fear, hope, anger, joy, and more. The kids, as well as Chet and I, got ornery quite a bit dealing with the household upheaval. We had Robbie’s birthday at the beginning and Christmas at the end. Made things more pleasant in some ways but curtailed much we would do for both at the same time. It was a roller coaster of a ride and now that we are done we ask ourselves if it was worth it. It was. We believe it and many professionals have concurred. We just wish we could’ve done a few more weeks.

If you are a parent looking into a feeding intensive or feeding difficulties center and looking for info, I hope this gave you a bit of what you were looking for. I know all kids are different and your circumstances aren’t ours. Most kids who do these have a g-tube and for that reason there is a lot more info to find for those who have gone through with those issues. For those like us though – not so much. Best advice I can give is to ask the center or Dr’s a ton of questions. Write them down when you think of them, brain storm with your spouse or friends or other professionals, take in your list and write down your answers! Never be afraid to ask any question, no matter how small or dumb it may seem. Be sure to pay close attention to what they are doing so you can replicate it at home. We requested to be shown how they prep the food, so each of us had a session with the nutritionist who taught us how they go about making it the consistency they do and how to continue the progression. They expect you to work hard at home and keep on top of it during and after the Center to keep the progress going. Have support on hand and don’t expect too much of yourself for the duration of the intensive. It takes a lot out of you. The other set of parents who were there when we were agreed whole heartedly. I hope and pray it works out well for you.

Family and friends keep praying. He has a lot of work to do still but is carrying on like a champ. Now that he is over being sick from last week we are upping the challenge again and it was rough on him today. Pray specifically that chewing “clicks” with him and he continues at a steady progression. Thank you all so much for the love and prayers you’ve already given! We are truly blessed!!!

Ok, what did I forget? Questions? LOL

Playing Catch Up

We will play shortish catch up!

Well we started ABA again about six months ago. God led us straight to his new therapist! She has been wonderful for us. Not sure how well school would be going without her. We are starting to work on his play skills and have been working on his communication improving. He is doing really well :)

Speaking of school . . . Robbie started kindergarten! We are homeschooling just like we always wanted to. So far it is going well and it’s fun to watch him enjoy learning. When I get a few pics of the school room and have a bit more time I will do a post just on this with more info.

Henry has been listening in on Robbie’s school and is picking up letters and numbers easily. He now enjoys copying letters I have written in sidewalk chalk and does a really good job of it. He also signs “H” for his name on most everything! Another surprise from Henry is that out of the blue he started drawing pictures. Big head people, the sun, odd things I don’t know what they are. It’s adorable.

Robbie is loosing teeth! He lost his third one today :) He does great with it and brings them to us when they fall out. Today I traded him a quarter for it. He liked that and promptly put it in his monkey bank.

We have been spending more and more time playing outside. Robbie is getting more adventurous as he wants to keep up with Henry, and that boy has no bounds! The other day at a new to us playground with stuff R typically won’t play on he tried climbing up several times but only made it about half way before coming down. Henry was up top pretty quick. After awhile Robbie got mad about something and scaled straight up to the top! After that he was up and down like it was second nature. I was quite surprised by how at ease both of them were so high up with no railing or wall of any kind. Henry loved the new version of the merry-go-round :)

This is Henry having his first every very own hot cocoa. He usually gets a few sips of mine but not much due to his dairy intolerance. Starbucks carries coconut milk now! He was pleased as punch and sat so quiet and happy in the cart the whole trip. I could get used to that!

Last on the list but not least. Robbie started baseball today! He is in the Challenger Little League (special needs league). We weren’t sure if he would actually play or not. It’s a bunch of standing around after all and he doesn’t like being restricted from running around. He LOVED it! Once they got a bit more firm with him and quit letting him run around he did pretty well. The coaches and buddies are wonderful with all the kids and did a great job. As we left he saw other kids playing ball and said “I want play baseball!” LOL he was soaked in sweat and had looked like he was going to pass out (according to Chet) from overheating but he had soooo much fun. We will be bringing more water next week, putting shorts on him, and they won’t let him run for twenty minutes during warm up so that should help.

He had fans ;)

All in all, a lot going and so much fun. Still doing OT and we have an appointment with the feeding center next week. Hopefully I will do the school post next week. Thanks for making it this far and keep the prayers up :)

Many Happenings

Hmm where to start? I think I will go back to where the ENT wanted a sleep study done. 

We had the sleep study done and they found Robbie has moderate obstructive sleep apnea. That combined with his consistent tonsil problems was reason enough to get the tonsils and adenoids removed. They said it would improve the sleep apnea by 80 - 90% and that since he will be getting better sleep we should see an increase in focus and decrease in hyper activity. We will see...

We got that info a few days before Robbie's 2 GI procedures and blood work, all for allergies for the feeding center, were scheduled to be done. We let them know and they decided to postpone it and have it all done at the same time. So on Thursday, Feb 26th he had the T&A, Upper GI with Pancreatic something, lower something sweep, and blood work. This hospitalization was the hardest he's had. In the past Robbie hasn't blinked an eye through it all. Never got nervous or upset, just stayed his happy-go-lucky self.  Apparently the sleep study has changed that for him :(  Robbie is allergic to adhesives and hates all things that stick to him. Well for the sleep study he had patches stuck all over his head, face, neck, chest, legs, etc for 8 hours. It's kinda traumatized him I guess. He did fine at the hospital until the nurse put a patch on his chest to get his vitals. At that point he broke down and just wanted to leave. From then on he went from smiling to crying to smiling again. Anytime they had to attach something to him he would break down. They gave him premed to calm him down before putting him in the gown and taking him back. I'm glad. 

Pre-med Drowse

The surgery and procedures went very well. He came out of anesthesia better than he ever has before. He was upset when he woke and kept asking to leave. Seeing it wasn't working he asked for the patch off his chest, so we did, then the iv and wrap off his hand, then his gown off, then shirt on, followed by pants, socks, shoes, Daddy, door and car. With each step calming down a bit then asking for the next. This kid is using ABA against us! 

Monkey got bands too :)

Recovery was rough. He ended up in the ER Sunday night with dehydration from non stop vomiting. They did some xrays, gave him a steroid shot to decrease swelling, an Rx for an anti nausea med, and pumped him full of liquid. They said he seemed to have caught a virus and we think they were right. Henry had a head cold and then Robbie and I seemed to get it. So Robbie has been coughing like crazy most of his recovery. He was able to keep nothing down but water from Saturday after surgery until Wednesday. Since then he has been slowly getting back to normal eating. We aren't quite there yet but hopefully soon. 

ER Visit

Today we went to the GI for the results of the allergy tests. Fortunately he has no serious allergy issues. They have totally ruled out dairy, gluten and all the biggies that stay in your system longer and cause more serious malabsorption type problems. They did find a few of the other kind of allergies where it affects you within an hour or so and then is out of your system quickly. It could be enough to make him feel bad and not want to eat. Peanut, apple, peach, and pear. Apple being the highest. Odd huh? So they referred us to an allergist in order to have it verified with a skin test because it is more reliable. Poor kid has apple at least twice a day! They also found reflux and want him on two medicines to treat it. 

The dr was very concerned about his weight loss over the past few weeks and that combined with getting the reflux under control and the allergies verified, has moved the feeding center off another 3 to 6 months. Super frustrating!!! He said this is why they thoroughly check though because if Robbie had gone through the center with these issues it would have failed and he still wouldn't be eating right. 

So we keep working on what we can and wait. Keep up the prayers for this as well as ABA. We have a few leads for it and are just waiting to see how it plays out. Also pray for his upset over Drs now. Ever since he has been almost hysterical when we had to go to the ER, then the Dr, and again to the Dr today. We have a minimum of 4 others this month, and the allergy tests (whenever that happens) is going to be unpleasant as well. He has many Drs to face and I hope and pray he can go back to being happy and at ease to see them.