The end of the waddler days…

If anyone is looking for Mama C, I am cuddled up in a corner with a box of kleenex crying over the last day of school (which was yesterday)….!

Oh man, what a mess I have been! The thing is, G has been with these teachers longer than most (1.5 years) – they have believed in him, encouraged him, and led him to accomplish so many thing – many that we didn’t know if he would ever do frankly. Within a month of starting at Rise, he started clapping, something he had been working on forever. He started sitting independently, he started rolling….now, he “sings”, communicates via signs and vocalization, makes choices, crawls (and is even seen on all fours more often, as opposed to the army crawl!), loves rainsticks (instead of despising them as he did a year ago!), eats with a fork intermittently, progressed with his sensory sensitivity, is a jokester, had his first crush…and the list can go on forever….

The thing is, we know G was a challenge going into this school, even for a school meant as an inclusive environment – he is on the far end of the spectrum of abilities, and there was a time when we weren’t even sure they would allow him to attend and had to wait for them to determine if they could handle him. These teachers and therapists embraced him, loved him, and led him to such immense progress. There are no words deep enough, no object of enough value, and no amount of gratitude that could even begin to express how much we value the staff of this school. I wish I could even express a tenth of how thankful we are for this group of people, but there is no way I can. Instead I just cry πŸ˜‰

As Peter kindly pointed out, we will see them again in 5 weeks. okay, okay, I know. But these are the first teachers we entrusted our baby to, and they will always hold a special place in our hearts! And, with the end of the school year, G’s first crush, the adorable lil P, is moving away. That makes me cry too…I guess I don’t do well with change πŸ˜‰ I only found out today one of his teachers won’t be returning, and that almost sent me to the looney bin.

And as if I wasn’t emotional enough, here is a lovely quote from a very special lady (and teacher) in G’s life, written in a note:
“…From his beautiful smile, to his sweet spirit, & curious soul, my days were filled with his little blessings! I want you to know that I have learned so much from your son & he has left an imprint on my heart! Graham is truly capable of amazing things!…”

With all the unknowns that fill our lives, it is such a blessing to know Graham has an impact on others. We are so thankful for the love poured out on our little man and for being recognized for all the awesome things he does!

And all this over 3 teachers, 2 that he will still get to see next school year! His school therapists will all stay the same, and he will be loved by 3 new teachers that I am sure will be equally fabulous.Β  Go ahead and reserve me a bed at the mental hospital when he actually graduates from Rise in a few years!!

And to close out this awesome school year, some of my favorite pics from the last week of school, which included water day (with a slide!), a picnic, pajama day, dress silly day, and G’s favorite activity, swimming in noodles!

G_books G_picnic G_tutu G_noodles 2 G_noodles G_waterslide 3 G_waterslide 2 G_tube

As some of you may know, Mama C’s career involved designing health insurance plans for large, high tech employers. Thanks to a super hard working, family loving, thoughtful Daddy P, I was given the opportunity to step out of the work force and spend more time with the kids. In doing so, we thoughtfully considered what it would mean for Graham and his healthcare – we knew there would be changes, and possibly some challenges, but never thought it would be quite so heart wrenching…

You see, we received a call last week from G’s speech therapist that G is not eligible for speech therapy based on his diagnosis. What?!? To be fair, I did look into this before the change, and while we couldn’t speak to someone at the insurer until our start date, I never imagined there would be a flat out “no”. We knew his 300 visits a year (2x week for speech, physical, and occupational therapy) would be reduced to 60. That’s a decrease to one visit every other week which is already a hardship. We knew we would need to be creative, and his current services are billed as home health care…and there is a different limit for outpatient rehab…SO, if we (inconveniently) take him to a facility for services 6 months of the year, and do home health for 6 months (they see him at school or home), that gets us 120 visits! Still not enough, but much better!Β  (although in speaking with a case manager at the insurance company, she said this likely won’t be covered because he is either able to get out of the house or isn’t…can’t be both. dumb.)

So as we are meandering this, we get the dreaded call…the insurer only covers speech therapy for an “illness” (mostly cancer), and in their viewpoint, since G won’t talk, there is no point covering this type of therapy for him. WHICH IS RIDICULOUS! He is making drastic improvements in his speech and has made huge strides in just the past year.

And to top it off, his developmental pediatrician called me the very next day to say she has concerns with G’s feeding, and his speech therapist needs to do this and that…while I hold back tears until she is done, to tell her that we can’t do any of that because insurance won’t pay for it. (okay, maybe I didn’t hold the tears actually…poor lady…)

She is of course fairly livid about this, but we then turn to the vicious cycle of the US healthcare system. Talk to the insurer, find out how to appeal, talk to the therapy company, tell them what to write, the therapy company says it’s not their place to appeal, the doctor needs to do it, and around and around we go. So now we are in limbo waiting for the doctor to get back to us about all of this and how she may be able to convince the insurer why speech therapy in necessary…despite his “diagnosis”. Erg.

This has been a huge disappointment, and there isn’t anything we can to about it at this point, but sit and wait. In the meantime, G loses out on valuable services. I called the therapist to see if we can just pay it out of pocket…and guess what – for private pay they STILL charge the SAME as they charge the insurance companies – $125/visit. So, with the 240 uncovered visits (300 he needs minus the 60 they will cover), that is $30,000 a year.Β  I did that math 3 times because even I cannot believe it!!!!! THIRTY THOUSAND DOLLARS TO GET G WHAT HE NEEDS!!!! So, we decrease his visits to once a week, and we pay $12,000 out of pocket…just insane.

So, the last resort is looking for private therapists that don’t work with insurance (which I used to think was crazy) and they charge $90-ish…a little bit of savings we will take!

The bright side…it’s almost summer (!!) and G will get a break from his crazy therapy schedule! School is out next Tuesday (tear) and I am both excited and terrified of spending the next 6 weeks with the 2 crazy munchkins! Look out Austin!

Splash pad fun!
Splash pad fun!

G had a check up with Dr. F, his developmental pediatrician a few weeks ago, and overall it went well. It wasn’t the intense testing he went through last time, but she did feel he is working at about a 12 month level now, which reflects progress which is awesome. A key outcome was to encourage him to play with toys appropriately – for example, he LOVES cars, but flips them over to turn the wheels, instead of rolling them on a surface. He “reads” books, but just likes to flip the pages without paying attention to the orientation of the book.

Most notable however, was the education I received on autism. We have recently changed benefit plans, and basically nothing is covered (more on that in another post), unless you have an autism diagnosis.Β  When we left the NICU 2.5 years ago, we were told G would most likely be autistic, but didn’t really know what that meant. A provider at some point along the way said if he doesn’t talk, he is automatically designated as autistic. We of course didn’t (and probably still don’t!) have a good understanding of the spectrum and what it means anyway, but he shows obvious affection, babbles incessantly on occasion, and loves to be around people and play, which doesn’t seem stereotypical autism in alot of ways.

Where we are now is that Dr. F has said that she cannot diagnose him as autistic unless she can differentiate his behavior from just being “delayed.” So, basically, he might just be delayed in his behaviors, and we have to give him extra time to get there. She is actually working with his school right now to observe him there and have a better idea of his full social scale, rather than for an hour at her office.

With G’s full range of diagnoses as they stand today, I am not sure adding one more makes that much of a difference in the grand scheme of things. The things we were worried about, such as not connecting with his family or not showing affection, he does, so that has been a weight lifted off our shoulders. As parents, we of course don’t want to add autism to the list. However, thanks to the healthcare system in the US today, we are now hoping and pushing for it, as that will open up doors to therapy he is no longer able to access under our new health insurance, specifically, speech therapy. That is for a whole different post….but the fact that G’s future successes are now limited by an autism diagnosis is a huge failure of the system today. All kids (and adults for that matter) should be able to access the care that they need and have shown success with! Erg, now I am getting on my soapbox…must end this now, and am sure it will continue in another post for another day…. πŸ˜‰

I will end this with a few pics of the most recent sibling love…big sis hugging on her brother, and he beating her up thereafter… I LOVE this stuff..typical sibling strife!Β  πŸ˜‰

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Our Waddler is moving on up….!

On Friday we had G’s End of Year review – this consists of an hour meeting with his lead teacher and all of the school therapists that work with him. It is a whirlwind of information, but so very informative, encouraging, and a reminder of just how amazing this school is! G started in Ms. A’s class January 2014, so after a year and a half, she has seen the full transformation of our little man – when he started he could barely sit up and didn’t move….now, he sits on a stool on his own (and is even making progress in getting off the chair on his own!), army crawls wherever he wants to go, has a charming, joking personality, can feed himself, and so much more. We laughed alot about the things he HATED when he started school – specifically, the rain stick and anything tactile (paints, mud, etc) and now those are the very things he LOVES!

We reviewed G’s goals for the year which were:
Cognitive: 1) Demonstrate appropriate play with 3 familiar objects in the class (books, blocks, etc.) – MET
2) Imitate with objects and actions (ie, peer pushes car, G pushes car) – PROGRESS

Social – Emotional: 1) Sign a greeting and closing while maintaining eye contact – PROGRESS
2) Engage in turn taking by signing “me” or “my Turn” – MET

Self Help/Adaptive: 1) Use a fork to self feed and return the fork to the table 10 bites at lunch – MET
2) Sign “more eat” to request more food at meal times – PROGRESS

Physical therapy: 1) Stomp each foot one time while sitting on a stool to demonstrate dynamic sitting balance and lower abdominal strength – MET
2) Use a piece of furniture to pull up to tall kneeling – MET

Speech therapy: 1) Follow directions to put an object in a box – MET
2) Sign “more” and “my turn” – MET

Occupational therapy: 1) Purposefully imitate both vertical and horizontal strokes – NOT MET
2) Place 3 large beads on a vertically standing dowel – PROGRESS

Overall, everyone had such great things to say regarding his progress, determination, and self motivation. When he decides he wants to do something, he will figure out a way to make it happen. We set new goals for the next school year, to be shared in another post πŸ™‚ The one we are forgoing is the desire for him to purposefully imitate horizontal and vertical strokes – the intent of this is to set him up for handwriting, but we aren’t sure his strokes will ever be “purposeful”, so it may not be fair to ask him to do this when he most likely won’t be writing anyway. Next year’s goals seems to focus much on communicating via iPad, which will be exciting to watch. We are already working on this some, and since he does love technology, he seems to love the iPad! We will see where that leads us….!

Yellow day!I think this pic pretty much sums up how much he loves school!
It’s sometimes easy for us to gloss over the amazing things he does daily. He works so hard just to sit up, much less stand, crawl, and eat. It is a great reminder to review his goals and see just how far he has come in year (9 months really!) – his determination is beyond words, and I have no doubt will continue to push him to new, amazing things!

Our lil pirate!

What what? Mama C updating the blog the same day as a doctor’s appointment?! What is this world coming to?!?!

Today G saw yet another ophthalmologist, making this #4, and our very last shot in Austin. Thankfully, I would say it was a success, and finally a doctor I felt listened and provided thoughtful input. To put this away forever and ever, Cortical Vision Impairment (CVI), which I cried for months about, is totally off the table! We have felt this was possibly a misdiagnosis from the beginning, but even more so as time has gone by. Dr. B confirmed he didn’t see this at all, so we are done discussing it.

G does have an eye that continues to cross, and he noticed that his right eye is significantly stronger than the left, so we will be patching his right eye for one hour every day.Β  He hated it when I did it, but I conveniently ensured he would be distracted by Elmo, so he got over it pretty quick. (excuse the half naked kid, he had made a big mess of his shirt, but I promise he is usually clothed)

2015-05-04 16.43.02We will go back in 3 months and see if the patching helps strengthen the left eye.Β  Dr. B also confirmed G is far sighted, which is odd since we were previously told he was near sighted. Apparently if docs do the exam before the eyes are fully dilated, you get near sighted, even though that isn’t accurate. As Dr B said, one step at a time, so we will stick with the pirate look, and move on to four eyes at a later time!

And for your viewing pleasure, G crawling a few days ago (he has gotten even better since this!) – you can see Daddy P invested in serious crawling gear and G getting up on all fours is very exciting for us!

ps we are aware you can’t see videos when this post goes out in email. Click on the actual post to see it online and the video is embedded there.

Catching up!

So far behind I know!

Since we last posted, G had a power chair for about 3 weeks. I wouldn’t say it was a huge success, but it was worth a try πŸ™‚ Here is a video from his first time in it…I wouldn’t say things changed much during the trial. Often he would accidentally hit the controller, and couldn’t decide whether to cry and be scared, or to laugh and think it was hilarious. There were two times that he actually “drove” for about 15 seconds, and in doing so maneuvered a turn in a sidewalk, and even went off roading in the yard and thought that was hilarious (as did the rest of us!)

Based on all of his therapies and stander that we incorporate throughout the day, we have decided to hold off on the power chair for a little while. It’s just one more thing to find time for….I had pretty frank conversations with his physical therapists about the need for it, commenting how awesome he is doing with walking in his gait trainer. They were honest back that yes, G will walk (yay!), but he won’t walk far (boo!). It will take so much for him to walk, we don’t want him to tire himself out and not have any energy left for learning in school. Daddy P and I are adjusting to this reality and that yes, we will need a wheelchair for the long haul. Daddy P is pretty excited about the minivan though, he’s been wanting one for years now! We will wait until January of next year though so we can use up our benefits quickly, and probably leave it at school so they can work with him in it there.

It has become very apparent G understands so much of what we say. He communicates back in grunts, of which we know exactly what he is trying to say – he has one sound that sounds like an “urgent giggle” (meaning “yes!”) and the other sound is a bit of a typical whine/whimper (“NO!”). He has been vocalizing more with different sounds. When he says “more” (with his hands), he vocalizes “mmmm”. The best has been when I give him something he asked for and I say “what do you say G?” and he responds directly with “uh uh.” Okay, okay, that makes no sense in type, however the intonation is very much a “thank you.” We will need to get it on video.

Physically, he has been pulling up to all fours sporadically, which is huge progress! We are super excited! He doesn’t usually get his head up, but it is apparent his core is getting stronger. He is moving his knees is a more “typical” crawl also – His one legged army crawl is still the fastest way to get around, so when he is in a hurry, that’s his preferred transportation! He is still walking up a storm in his gait trainer; we have tried a walker (which is similar but less support), but he is not nearly as interested.

Cognitively, I have noticed him playing more appropriately with blocks, balls, books, and cars – all things they look for in his development reviews. While he doesn’t play with peers directly, he is more interested in playing near friends at school, which is great.

And more than anything, G has the best smiles EVER! Here is a picture of him and his Nana during Spring Break! He is one happy dude!
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A day in the life….

Thought we’d share with you some pictures and video of G in his day to day activities….Here are some recent snapshots from school:

Playing doctor

 

Kisses from a friend!

More kisses!

(His face cracks me up in this one!)
(His face cracks me up in this one!)
Music time!
Painting with doughnuts!
Eating his doughnut paintbrush
Eating his doughnut paintbrush

As you can see, he is quite the ladies man….;) I love watching him be a “big boy” and his school is so incredible and getting him to participate in activities the same as the typical kids. His sensory issues used to be a huge issue with any art activity, but now he gladly participates without pulling away! I also love seeing him sitting up so straight in a chair- you can see he is the biggest boy in his class…by far!

So then we drive the 45 minutes home (wah wah), and while Mama C cooks dinner, the rest of the fam is usually doing something like this:

Sister C is great about playing with her brother and especially if it helps her own argument to get her way…for example, according to Sister C, he is often saying he wants to watch more “Princess Sofia”, even though I am pretty sure he is saying Sesame Street πŸ˜‰ (Note: he doesn’t say any words, but we are working on interpreting his grunts!)

Yesterday a therapist did tell me G was saying “mo” for “more” and another told me he was saying “ha” for “hi”….I haven’t heard these yet, but in this video you can see G forming a “m” sound when I ask him to say “more”…we are working on it and hopeful we will get some words out of him πŸ™‚

 

Going for a walk!

Just wanted to share this gem captured this weekend:

What you do miss here is the massive fit he throws the instant you try to get him out of his gait trainer. He LOVES the freedom of being in that thing! Fortunately there aren’t many cars (or lived-in houses!) in our new neighborhood, so he is able to take over the street. The weather turned freezing today though (good ole Texas!), and having him in that thing in the house, he just crashes from one wall to the next…! Luckily we know some good painters! He also figured out how to turn around in circles and was doing “doughnuts” in the living room for 10 minutes. Boys will be boys!

Kicking off a new year…

Man, I had really gotten on a roll there at the end of 2014 and then radio silence. Sorry about that – between moving and the holidays I totally missed out on keeping G’s fans up to date!

After a well deserved vacation from school and most therapy, the little ones started back about a month ago. G has been making tremendous progress in his gait trainer – here is a video of him about 2 weeks ago:

You can see he still doesn’t have the stamina to go for long – his core gets tired and he puts his head down often, but looks at those beautiful steps! There is a “seat” that goes in the trainer which we have taken out – that green band keeps his butt from sticking out too far, which is usually what leads him to lose control. With that modification he is doing ana amazing job. He is even getting better at making turns and not losing his footing. It’s so cool to walk into school and see him cruising down the halls!

His OT recently went to a training and learned about all this research that says kids with power chairs love the independence it provides, and actually get more motivated to walk knowing what it’s like to get around easily. I always thought the opposite, that he would see how easy the chair is and lose motivation to learn to walk himself. Anyway, we are now working on getting a trial of a power wheelchair to see how he does. The poor walls of our new house are getting quite the beating! Will post a video once we have it in a few weeks!

Beyond the walking excitement, we continue to work on G’s attitude during transitions – he throws a fit every time we leave school, and now getting out of the gait trainer as well! This involves kicking, thrashing, biting, and screaming. It’s not a pleasant experience, and once he is in his car seat or moved to another activity, totally happy as can be. It’s that 2-3 minutes that are a bit of a nightmare. We have tried favorite toys, singing, a transition board (a visual representation of what he is doing next), all to no avail. I downloaded an app today called “Therapeutic Listening” – I don’t totally understand it, but certain sounds and tones are supposed to helpΒ  with their behavior and adjusting to changes. We will see how that goes.

And you may not know, this kid LOVES spaghetti. Like nothing I have ever seen. Here’s a pic from a Mama C and G date night which of course I spoiled him with his favorite!Β  Oh, you can’t tell here, but he is doing pretty well with using a fork too – a few bites with each meal anyway which is encouraging!

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And I quote…. “rockstar”

Following Dr. F’s evaluation last week, I have been working with his awesome therapists on their opinions of what to do next. His PT, the amazing Ms. S, wrote the following email in response – Daddy P and I couldn’t be more proud and in awe of his super fast progression in the gait trainer!

“I think him walking more throughout out the day is going to really help his tone! He did amazing on Thursday. We walked without the seat and he only needed occasional help to remain standing (only about 20% of the time). Furthermore, he took alternating steps 90% of the time…no more bunny hopping! That is amazing progress in such a short amount of time! He wanted to keep walking the whole session, but my back was giving out! So we stopped after about 30 minutes and then worked in quadruped over a stool (the ones in the music room) and he only needed occasional help to stay on hands and knees while turning the pages in a book.

He continues to be a rock star in PT!”

What a cool little dude. Hoping we don’t lead him into a regression during the upcoming 3 week holiday break!