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. 

Small Steps - Big Leaps

Lately Robbie has been making incredible strides in his speech. When we talk about speech with Robbie it has nothing to do with how many words he has or pronunciation but everything to do with functionality. Typically when he is evaluated we are told that his vocabulary is beyond the norm for his age. But what good is that if he cannot communicate his needs, express his feelings, or even get someone'
s attention and tell them something? 

About 2 years ago we read a study about Omega 3-6-9 improving speech in some kids with delay and autistic children. We figured it was worth a try and ordered it. Within a week or so of starting it his speech improved. Consequence? After the bottle ran out we never got around to ordering more for about 8 months. Again when we started his speech improved. Hmm interesting. We ordered a few bottles in a row then it got forgotten again. 

December 2014 I was scanning a book at B&N and came across a chapter on autistic children having low cholesterol and how when it gets balanced out they see improvement. We asked the Dr about checking his levels and she said if he was getting omegas then it should be fine but she would check if we wanted. We decided to wait but it reminded me of the oils again so we ordered. It's been about 3 weeks and man has there been leaps of improvement! I have no clue what the science is behind it, if it's his cholesterol or some other thing being balanced out, but after 3 separate trials and each having marked improvement I think we will be sticking with it regardless of the cost this time! 

In the last two weeks he has begun to regularly use Mommy and Daddy, telling us  to "come here," tapping on the arm to get attention (non verbal but functional communication), using Henry's name, telling us about what he has seen, asking for things he wants with greater ease and more specification. His negative behaviors have decreased and attention increased. I'm sure the latter will fluctuate but the ABA evals always said his behavior issues are verbally based. Of course we are also heavily working on his speech and making say things as he should but that is always a repetition of what we say. It's working though and I think the oil is boosting his ability to put into practice what we are teaching him.

I had happy tears twice today and wanted to shout out for joy (well I did once). This morning when we were waiting for OT he walked up to one of the receptionists desks, peeked over and said, "Whatcha doin?" This was after we had said hi to her). She replied that she was working and asked him the same. He said something then walked around the counter so she could see him and said "See shirt" while puffing out his tummy and rubbing the dino on his new shirt! He's NEVER done such a thing!!!! He then walked over to the other receptionists desk and looked for her but she was not there. He looked over at me and said "She not home." Meaning she wasn't there. That's the first time ever that he has made any sort of comment of that type! 

Yellow chalk on a tree isn't the easiest to see. 

The second time was this evening as we were playing outside. Lately we've been making a big effort to not let him stay in his own world but to teach him how and force him to play things like a typical kid does. We were in the corner of the yard that he calls the forest when Henry ran over with two pieces of chalk in his hand and started drawing on the swing set. I took one piece and Robbie's hand and had him make his name. The day before we had drawn a bug with a smiley face, his first experience that I know of with making a smiley face. Well after I let his hand go he ran back to the forest and pointed up at a tree and said tree face! (there is a tree on a street nearby that has one of those fake faces on it and he has been obsessed with trees having faces ever since he first saw it). I said yeah you can make a face on the tree and helped him with two eyes and the mouth. He was SO excited! He ran to another tree and made two eyes and a mouth, he pointed them out saying "Eyes. Smile." I shouted for joy!!! He has NEVER drawn something purposefully before!!! And then he talked about it! He was on a mission at that point to put a face on every tree or branch he could reach in his forest. Then he spotted the trees on the other side of the yard and yelled as he ran "Come on mommy! So many trees!" I was in shock. I know you are probably thinking I'm nuts but this is really major for him in so many ways. Functional language by 6 is one of the major indicators of being able to lead a typical life. And he's just so happy. He says that all the time now too :)  He will smile at us for a minute then say "I so happy." When Chet got home I told him to show his Daddy what he had done and for the first time he responded to that statement by telling Chet to look as he pointed out his faces. 

All the oaks, the palms and even the maple got smilies

My heart is overflowing. I cannot express the joy I have over these typically small things that are just so big for him. 

Dental Fun

Today was Robbie's second and Henry's first visit to the dentist! Robbie did amazing, like he did last time. His dentist is simply wonderful. His front lower teeth are beginning to loosen so the Dr said to keep an eye out for that in the next year or so. Apparently when they start to loosen the back molars start to show up too so we are on the watch for that as well. Robbie's teeth are in great shape!

Henry, poor Henry hated it. Robbie smiles and laughs the whole time but Henry screamed the whole time. Not exaggerating. The. Whole. Time. They worked fast on him and he was done in about half the time as Robbie. His teeth also look great but his upper jaw not so. The upper jaw should be in a straight line. His left side slopes down. Dr Mike said, "It could cause speech problems." We told him that he was in speech and he said it makes sense and that he may not be able to form words properly with the left side being weaker because of how it is held and that Henry obviously uses the right to chew on things more and strengthen that side. So I called the ST and let her know so that we can be working on strengthening the left side and do what we can to help now. The dentist also said orthodontics will be in his future to fix it. Poor kid. It could have been caused by the way he chews his paci or it could have always been that way and he chews his paci like he does because of it. He doesn't know since he's never seen him before. However we are to wean it from him slowly.

By the time we left Robbie had every person there wrapped around his little finger and Henry had his arms wrapped around Daddy's neck and did not want to let go. He was very upset Chet was not coming home with us! A trip to the pet store set all to right with him :)

Another Feeding Eval

Yet again we did an evaluation for the feeding center. It had been a year since the last and they needed to assess any progress and make a game plan for the center. This was by far the most informative eval we've had there to date. Robbie did well, better than he ever has, in spite of it being during his nap time. 

 Happy climbing trees!

What it comes down to is that if insurance gives the thumbs up, and barring any sickness, we will be in it in three weeks. They gave us a possible schedule and more info on what it will be like which was nice and let us know it will be four instead of five weeks. They also gave us an impossibly long list of things to be working on in the mean time! 

With in the three weeks Robbie also has to have another upper GI endoscopy, lower small endoscopy, and a battery of blood test. It will all be done at one time when he is put under. They are searching for food allergies. The Dr is pretty certain that could be the reason he is too light weight for the amount of food he is getting and perhaps the reasons for his eating behaviors. He also believes Robbie is not digesting his food properly. In doing this they are trying to make the feeding intensive as successful as possible by addressing any possible issue that could be affecting his eating. 

Wore out after the eval. Rare for him to sleep in the car.

Please be in prayer for everything and his health in the mean time. If he is sick they will not let him start. 

Thank you!