The adventure continues…

G met with his developmental pediatrician this week. He didn’t go through a battery of tests with each therapist to be scored on his developmental level, instead it was just a check-in, much to my pleasant surprise.

To note, this doctor has concerns regarding G’s super big head, and it’s funny shape – his skull is elongated more so than round. In my opinion, it has always been this way, however, she has concerns that perhaps some of his skull plated fused together before they were supposed to, forcing the skull to expand lengthwise. If that is the case, and if his brain is still growing, it will create pressure in this skull and cause really bad things. He doesn’t present any symptoms of this (headaches, irritability, nose bleeds, vomiting), and I really think he just has a big head, which is commonly found in these 3q deletion kids. However, to rule things out, he is being referred to a plagiocephaly clinic regarding “sagittal synostosis“.  We hope to get into the clinic in a few weeks for an evaluation which will likely include a CT scan. I confirmed he doesn’t have to go under (which was a terrible experience last time he has anesthesia), and will be locked up in a papoose – he will HATE it I am sure, but worth the few minutes of screaming!

Secondly, the doctor does notate some autistic qualities about G. Specifically repetitive play patterns, lack of reciprocal play/communication, atypical speech development and poor nonverbal communication. One example is that he doesn’t play much with a variety of toys but sticks to cars and books, for the most part. He doesn’t play back and forth with friends as we would expect at this age. He also is comforted by objects more so than people – as an example, we have always had a hard time getting him in the car – we have found if we give him a specific watch, he is completely fine. He should however, be comforted knowing his family is with him and that should be enough to ease his concerns. He is also developing quirks, such as, screaming like crazy every time we make a particular turn on the way home from school…it’s at the exact same place, and I am surprised he even knows where we are most of the time, but it is really bizarre. All formal evaluations for autism however require the child be ambulatory, and until then, it is hard to distinguish between development delay and autism.

We have agreed he is getting the appropriate course of therapies at this time, and should he plateau in one of them and not make continued progress, we may involve an ABA therapist to work on behavioral issues at that time. He is a busy boy already, so I am just fine to wait for any more therapies!!

Due to the length of the doctor appointment, G got to hang out with me until we could pick sister up, so we had a lunch date and a trip to WalMart – he LOVES going to the store, so that was fun for both of us. 🙂

One recent funny thing G does, when you say “knock, knock”, he says “who’s there?” and then starts giggling! It is so cute. He isn’t consistent about it, but probably performs half the time, and it’s the funniest thing to see him “making jokes” 😉

 

Back at it!

School started back a week ago, and G made it back for two days and was having diaper issues the other few days, so he had quite the abbreviated week. Mama C is hopeful we are over it and he can get back into the routine – today’s drop off was a bit rough!

One thing we did over the break was turn G around in his gait trainer – you can see here he is less supported, but with the front being open, he is better able to access activities at school and in the classroom. This set up is also similar to a walker, which he will (hopefully) move to, which looks similar but without the support around his core.

G new GTHe isn’t quite as proficient with this set up, and the swim noodle helps keep his pelvis forward, but that back right foot often gets caught behind. He also needs constant reminders to put his hands on the handles – if he would do that, it helps give him more support and would be much easier, but he has no interest. His creative teacher put some pictures of Mickey Mouse on the handles, so maybe that will be more incentive for him to do it!? Hopefully with practice he will improve with this set up, and I am thinking with music therapy and a metronome as a reminder to keep marching to pace, it should help.

<img class=" size-medium wp-image-518 alignleft" src="http://www.meandmychromies.com/wp-content/uploads/2016/01/G-show-and-tell-300×225.jpg" alt="G show and tell" width="300" height="225" srcset="http://www.meandmychromies.com/wp-content/uploads/2016/01/G-show-and-tell-300×225.jpg 300w, http://www.meandmychromies.com/wp-content/uploads/2016/01/G-show-and-tell-400×300.jpg 400w, http://www vendre viagra.meandmychromies.com/wp-content/uploads/2016/01/G-show-and-tell.jpg 800w” sizes=”(max-width: 300px) 100vw, 300px” />G has show and tell at school every other week – here you see him sharing one of his favorite new cars with the class. I love seeing these pictures of him interacting with his class in the same ways as his peers. 🙂

As of Jan 1 our insurance changed, which means we have to go through the approval process for G’s therapies – I kinda hate missing out, but it’s also kind of a nice break to get home and have fun, instead of right to therapy! Hopefully all the approvals will be in place in the next week….

Tomorrow is the dreaded visit with the developmental pediatrician. It’s just the annual reminder of how far behind G is in his development, and while of course we aren’t surprised, it’s always a bit tough to hear. He has been working so hard though, I am hopeful we will see some big jumps in his scores! Stay tuned!

Christmas miracles!

Several months ago, one of G’s therapists suggested we look into a specialized trike that would allow him to ride a bike with his friends and sister. While we do have a regular tricycle for him, he can’t keep his feet on the pedals and isn’t much use for him. We looked into it, had G measured, and put our name on the wait list. It is completely customizable, so G’s version allows him to power it with both his legs and hands, and in addition to foot straps, comes with gloves to strap his hands on.  I was sure it would be a year or so before we received a bike, so imagine my shock when I received a call on December 21st that G’s bike had arrived and they were building it that night for pick up tomorrow! I couldn’t believe it and was so thrilled to give G his very own bike that we hope(d) he can power on his own!

The organization that provides these bikes is called Ambucs and here is a blurb about what they do:

Capital City Ambucs promotes abilities, not disabilities. Our goal is to provide children with disabilities with the opportunity to ride bikes. Our primary focus is on organizing fundraisers in order to raise money to purchase amtrykes which we then donate on a first come first serve basis to applicants on the wait list at no cost to the family.

Amtrykes help children improve motor skills, provide strength training, are fun to ride and offer the opportunity for inclusive play. They also provide a new form of mobility, exercise, and freedom to explore the community.

On Tuesday, sister C and I picked up the new amtryke from the hospital and headed home to wait for Christmas day! What a day it was! Gifts were piled high
(see G opening gifts in his awesome new cube chair here), there was much food to be eaten, and naps to be taken, so it was 3 in the afternoon before we were able to present G with his new bike. A bit to our surprise, he LOVES IT!!!!!!!!!  Here are a few videos – do note that we need some help from his PT and OT to get him set up correctly, so we were just giving it our best shot – I am sure he will look better on it once we get him set up the right way! While in the video we are mostly pushing him, he is already making progress and figuring out how to push his legs to make it go on his own. This will be ongoing great therapy for him, hopefully in disguise!

and heading home…..

We are so grateful to kind people in this world to donate to these trikes, both with their time and money. We look forward to getting further involved and supporting Ambucs so others can experience the miracle of watching children achieve things never thought possible! I understand there are Ambucs organizations nationally, should you be looking for an amazing organization to support!

Merry Christmas to all – I do hope everyone experiences their own Christmas miracle in some form or fashion, or feel free to rejoice in ours!

December update, finally!

I know, I know, it has been WAY too long since updating G’s biggest fans, so, without further ado….
  • G visited the ophthalmologist again – as you may recall, we are patching his right eye daily for an hour to improve strength in his left eye. This was the first visit where there was not noticeable improvement, but hopefully there will be next time. The goal is to avoid surgery for his strabismus (cross-eye), so we will keep at it and see what happens.
  • G got to go to the dentist which was quite the adventure! He wouldn’t let anyone do much of anything, but the dentist was able to ensure all if his teeth are there (!), and they look great. He has gaps between his teeth which I was originally concerned about, however I have a new found appreciation! There is plenty of space for his adult teeth to come in (and hopefully avoid braces!), and because of the gaps we don’t need to be TOO concerned about flossing because everything can flow through without getting stuck. Brushing is hard enough, forget flossing! We continue to use “training” toothpaste since he can’t spit, which is weird to me, but I guess he isn’t missing out on too much fluoride.
  •  AND, the dreaded ARD! It happened! It was quite overwhelming with 12 people in the room and without going into the nitty gritty details, we achieved as best we could hope for, for now. He “qualifies” for an hour of speech a week, and they (finally) agreed to evaluate G for OT and PT (which I couldn’t believe is an entire separate ordeal!). That was a bit of a struggle, but thanks to G’s teacher and Daddy P, we walked away with agreement for him to be evaluated (which I am sure will lead to him qualifying for services!). The open item is the timing of that eval, because as of now he qualifies for a 4 hour day, but when he turns 4 (August) he will qualify for a longer school day and therefore more services.
  • So now that we have the ARD recommendation, we start phase II which is to get funding for the proportionate share so that AISD will pay for his private therapy at The Rise School. We couldn’t do anything until we got through that meeting – I called the next day to find out there is no money left for this school year, so we start the process to get him on the list for next year.  Ah, the waiting game….I had a feeling we might end up in this boat, but with at least 2 more years at Rise, we will take what we can get!
  • In other awesome news, Daddy P’s employer increased their PT/OT/ST visits from 60 to 120 annually, which doubles the services G was getting!!!!! This is HUGE for us and we are so thrilled they were able to accommodate our request.  We do have to change from Aetna to BCBS however, which means more paperwork, and probably no services in January until everything gets approved 🙁 I am sure G won’t mind the break 😉
  • G had his last week of school, FILLED with festivities – pajama and movie day, a holiday ball, pizza party, book exchange, and more! Needless to say he has had a blast!
 Now Mama C and G are recovering from a cold, no thanks to all the fun I am sure. 🙂  G wishes you all a very merry Christmas!! As his gift to you, a few pictures from the past few weeks 🙂
 2015-12-06 19.55.59 2015-12-06 20.03.59 2015-12-12 19.24.13 g_fireplace G_mom christmas party
And look at this guy STANDING at the Holiday Ball!!! I am quite sure it wasn’t for more than a few seconds, but he is so tall and straight!! Thankful to his teacher and big sis for getting him up like that!
Holiday ball_GC&G at holiday ball

School district evaluation

In a recent post, I spoke about our hope to get G some additional services through the school district. He had his first evaluation with AISD 2 weeks ago and I suppose it was “successful”…

I always love the first question they ask is “What concerns do you have for your child?” to which I usually stare blankly wondering if I really have to answer that. Daddy P always suggests I tell them he isn’t running 7 minute miles yet and that is very concerning. 😉 Then there are 45 minutes of questions such as “Can he hop on one foot?,” “How many words does he say?”, immediately followed by “Does he speak in complete sentences.” That is usually when I glaze over again and am probably obviously agitated. I know, I know: I understand folks are doing their jobs, but being reminded repeatedly of all your kid can’t do gets a bit frustrating.

While I answered a barrage of questions, another therapist played with G. He was in great spirits and had fun playing with toys that I am pretty sure were from the 50s. 🙂 They didn’t understand his signs (which are generally modified versions of American Sign Language since he doesn’t have the fine motor skills to perform them in the official form), but once I explained them, they realized numerous instances they missed out on him trying to tell them something.  After about an hour and half, we left and they let me know they would call me with the results.

Within a few hours, they called to tell me G qualifies for services as “he does exhibit skills different from his peers” and “would benefit from additional assistance”. I kindly said thank you and chuckled a bit.

So, now on to the hard part. In the next 60 days we should receive an official write up of his results and go on to schedule his ARD, the meeting that determines what all he qualifies for, and from what I understand, will require a good understanding of his rights. More updates on that to come!

Chatterbox

Just a quick one – G has been SO chatty lately! He talks all the way to school (45+ minutes) and back, and just smiles and thinks he is hilarious. I received this note from his music therapist (she sees him both as teacher of his music class, and also sees him privately):

Oh my goodness, Graham has been such a chatterbox both in our one on one time yesterday and in his music group today! Clear as could be yesterday he said horsey, drum, pan-o for piano, moo, all done, stick (wanting the drum stick) and imitated A/E/I/O/U sounds in a song context. And today in group, clear as could be he looked at our picture schedule, saw that dancing was next and loud so the whole group could hear yelled DANCE!! I wanted to share all the words I have been hearing, and there is a clarity developing as well.

Needless to say, I cried all the way to school after reading that. WOW. We have known for a while his receptive communication was fairly strong, but to know his expressive communication is growing so quickly is an answer to so many prayers. He will NOT speak or repeat on command when we try to get him to repeat any of the words he knows, but if he wants to say it, and the setting is right, we can definitely understand some of his words.

His speech therapist says he consistently says “I want…” to her, and said “bye bye baby” yesterday. I have heard him say “elephant” when looking at a picture in a book, and today he said “hi puppy” when he saw our new puppy. These are all miracles in our book and we are so excited what this might mean for his future communication!

As I just revealed, G adopted a new puppy this past weekend, and he LOVES him! He particularly loves when the dog barks, growls, or cries – he giggles incessantly at the puppy sounds. Not a great picture of him and the pup, but know that this was captured in the middle of a laughing fit! 😉

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Tomorrow is his evaluation with the school district – it will focus primarily on communication, so wish the little man luck!

 

 

 

3 year check up and more!

All good! G weighed in at 29 3/4 pounds, putting him in the 25th percentile of weight, while measuring at the 85th percentile of height. His doctor thinks as he is getting stronger, he will build up muscle and bulk up a bit that way, and he is just leaning towards the tall and lanky body type. So the great news is he did gain weight this time around and while a bit low, isn’t too concerning at this time. Yay!

Otherwise he had a glowing report and no additional actions needed! That seems like a first 🙂 He didn’t have any immunizations this time around, but he was very brave through his flu shot. I always hate thinking he doesn’t understand why we are putting him through such torture!

Along with turning three, his participation in <a href="http://www.dars achat viagra en ligne en france.state.tx.us/ecis/” target=”_blank”>Early Childhood Intervention (ECI) terminates. We have utilized the services available through ECI for his vision therapy primarily, but interspersed Speech, Occupational, and Physical since birth. Since we had great private insurance (before June!) we didn’t utilize ECI for most services, but it was helpful to have a social worked involved to guide us through the world of services for disabled individuals. For many children, upon turning 3 they enroll in PPCD- Preschool Program for Children with Disabilities. Since G is at an amazing private preschool which offers more comprehensive services than PPCD, we didn’t consider this too much. However, we have recently learned of a fund which is available to kids that attend private preschool, that assists with the cost of therapy. In order to have access, we need to go through the process as if we are attending school in the school district – through the ARD process (Admission, Review, and Dismissal) we will develop an Individual Education Plan (IEP) for G. That IEP will determine what services he is available for and what he would need to attend PPCD (ie, special aide, speech assistance device, etc.), at which point we will say thanks, but no thanks, we want to stay at private school, give us the money 😉

It is an overwhelming process involving an immense number of people – I have my third meeting with the school district coming up in 2 weeks – this is the first time G will attend with me for his official “evaluation.” From that evaluation the school district has 60 days to develop a plan and schedule the ARD meeting. We are unsure what to expect since there are so many horror stories out there, but are trying to gather as much information and data to be the best possible advocates for our little man. It is very difficult to find information, many folks within the school district I speak with don’t know anything about the fund we want to access (Proportionate Share), and the only place to find information is through other parents, Federal regulations regarding Individuals with Disabilities Educations Act (IDEA), or the State of Texas laws (not fun reading). Prayers for this process are welcome and we hope to have a positive outcome to report by the end of the year!

I am having a hard time loading pictures from G’s trip to Maine last week, so once I figure out the issue there, we will get them up for your viewing pleasure!

G’s Mickey birthday!

A bit delayed, but here are some pics of G’s big weekend turning THREE!

It all started with a Mickey party – he loved it at first, but once he saw the cupcakes, it was all over – there was only one thing on his mind at that point! Lucky dude smiled his way into 3 cupcakes….mama had to put her foot down after that!

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Brunch the next day and opening gifts…

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And lastly, an evening at the circus!! G LOVED it! We weren’t sure he would make it through, but he loved all that was going on. Couldn’t get much of a picture since there was so much to look at!

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Our favorite G story was when these guys came out on motorcycles and rode around in this big sphere (how they didn’t crash, I have no idea) – the whole time G was signing “my turn, my turn” – it was hilarious. Of course if Mama C has anything to do with it, he will not be getting on a motorcycle ever! 😉

It was rough getting back into the school routine after such a busy weekend! G’s big birthday present was music therapy once a week with his music therapist at school – he has it 4 days a week in a group setting, but we are giving him once a week one on one time in addition. He loves it so much and she sends us a great email and pictures every week – this week he was furious when it was time to sing the good bye song and threw one of his fits all the way back to class. hee, hee – I am sorry he was so mad and the teachers had to put up with it, but we LOVE when we find something he is so interested in!  He is approximating words and apparently loves the piano! Maybe we will end up with some musical talent in this family after all?!

We are leaving for Maine tomorrow, and will come back to several doctor visits for the little man. As for his 3 year check up, here’s hoping he gained enough weight we can go one year without talking about a “feeding issue” and getting a g-tube! Nothing but dessert for the little man while on vacation, we gotta fatten him up for his weigh in!

 

New school year has begun!

G started school last Monday and we are all glad to be back in the swing of things! He is adjusting well to his new classroom and teachers, and is happy to met his new friends. A few of his Waddler friends are in his new class (Toddler II!), but it’s mostly new friends! Here are a few pics from the first week:

<img class="alignnone size-medium wp-image-457" src="http://www.meandmychromies.com/wp-content/uploads/2015/08/G_swing2-225×300.jpg" alt="G_swing2" width="225" height="300" srcset="http://www.meandmychromies.com/wp-content/uploads/2015/08/G_swing2-225×300 viagra prix officiel.jpg 225w, http://www.meandmychromies.com/wp-content/uploads/2015/08/G_swing2.jpg 600w” sizes=”(max-width: 225px) 100vw, 225px” /> G_gait trainer 2 G_trucks G_book

His school therapists are still around, so they have been helping him get set up in the new environment, and it sounds like he will be transitioning around the school in his gait trainer, which is super to get those muscles moving. His private PT loved his standing yesterday, he didn’t lose too much strength over his “relaxing” summer home with mom!  He starts music therapy tomorrow, and based on the progress we have seen with him vocally, I know the one on one attention will be great. And it’s his favorite thing to do, so he will have a blast!

On the medical front, we saw his eye doctor, and the patches are working which is good news. By strengthening his left eye with patches we will hopefully be able to avoid surgery. We will keep it up and see him again in a few months and hope progress continues. He was fitted for new SMOs today (the braces he wears on his feet) so I am betting he will be much more comfy with ones that actually fit 😉

This amazing guy turns 3 on Sunday and we are just in awe of the things he accomplishes every day. He was woken up at 3 am last night (thanks to sister), and he was so mad, he was pulling himself up to tall kneeling (a big PT goal), and then putting a foot down to stand (another big goal!)!! I was so thrilled and yet so terrified he would fall head first out of his crib! He keeps working so hard and you can just see things clicking in that big head of his. Stay tuned for birthday pics coming soon!

 

 

Summer Fun!

G has been a busy little dude!! Here are some snapshots of the past few weeks:

First up after school was out, the Austin Zoo. Both kids love animals, and while the Austin zoo isn’t the most amazing, it’s very close to home! Then it was already the Fourth of July – Here’s a pic of us getting ready to leave and then watching a neighborhood parade – Graham wasn’t sure about all the noise but seemed to enjoy seeing the firetruck!

Fourth of July!
Fourth of July!

 

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After a BBQ that day we headed up to Dallas to meet G’s grandparents who live in Arkansas. Dallas is midway, and they were so generous (and brave!) to offer to take the kids for a week!! They had a plethora of adventures including the zoo, alligator farm, crystal hunting, swimming at a lake, and one of my favorites, The Wonder Place. Seriously, if you are ever in the area with kids, I LOVE this place – it’s like a big play gym and children’s museum rolled in one, and is GREAT for kids with special needs. G loves it, and I came back last year from a visit and immediately wanted to open one in Austin. Then I remembered the chaos of my current life, and put it on the back burner…. 😉

The following weekend we were back in Dallas to hang out with more family and celebrate Daddy’s birthday, and G pretty much just lounged in the pool ALL day – the kids LOVES swimming!!

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The next week was Mama C’s first full week with the kids, and it was BUSY! We went to a new therapy gym here in Austin, opened by a former occupational therapist, Little Land Play Gym. We went to The Jersey Farm in La Grange with friends visiting from out of state, and it was a blast. G really loves animals, and the goats are a definite favorite! He also loved the hayride!

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We also went to a local event, Children’s Day Art Park which was showcasing mariachis (G loves mariachis!) and sis got her face painted.

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And the highlight of that day, G got a haircut!!!!The curls are still there and he is adorable as always! He obviously loves it 🙂

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Later that week we headed to Llano with 4 other families and G had a super time. It was really sweet to see our long time friends meeting G for the first time and loving on him.   2015-07-18 10.16.52 2015-07-19 11.36.21

G had a great time, and of course loved swimming in the river, being his favorite activity and all!

After that long weekend, we had another busy week full of swimming with friends, The Wildflower Center with G’s former nanny and his former Physical Therapist, a Secret Beach here in town, and of course, therapy, therapy, therapy.

We have a new speech therapist (for which we are just paying out of pocket, if you recall one of our recent blog posts), so he has speech, occupational, physical, and vision and orientation/mobility every week. In addition, he is a practice patient at the local PT school in town, so he is visiting a bunch of sweet young ladies every week on top of his usual therapy. He loves being a flirt, so he doesn’t seem to mind, and since we are down on our allowed visits, we will take whatever we can get!

And lastly, we have noticed an immense increase in his vocalization in the past few weeks, which has been amazing!! I swear he said “Minnie Mouse” last night!!  Daddy P and I are in agreement that is his first word, although we admit, we only heard it that once. She was on a balloon, and we kept saying it, and he said it so distinctly! Anyway, here are a few videos for your viewing pleasure!
The first one shows his chattiness, and please excuse my persistence on the Minnie Mounse..it had happened just before this!

The second one reflects G’s comprehension, which is another thing we are so impressed with. While he doesn’t verbalize back, we know he is listening and understands much of what we say! (you also witness an apology from big sis after she took his beloved minnie balloon and let it go up in the sky…welcome to sibling love!)