Glimpse of Unfortunate Things to Come

Today, Mama C, and I had an unfortunate experience regarding strangers and G that I wanted to share.  We were having lunch as a family with our friend Cherisse and a few other friends for her birthday.  In the beginning of the meal, I put G in his high chair and started feeding him some baby food and let him gnaw on a piece of pineapple to help him work with his textures.  At some point during my time feeding him, our friend Kelly who was facing me says to me “I’m sorry, but the people behind you are laughing at G and taking pictures and it’s really making me angry”.  There were three younger adults at the table behind us who, unbeknownst to me, were having some laughs at G’s expense.

My dad instinct kicked in and I immediately turned around and asked them if they’d been taking pictures of G.  One of the girls at the table started mumbling something and I asked for clarification.  Eventually, after a few more things I couldn’t understand, she said that G was getting the pineapple in his eye and they were “concerned”.  I had been keeping a pretty good eye on G and had never seen this happen, so I didn’t know what to say.  I asked about whether they had been taking pictures of him, and they denied it again and told me: “You seem really self-absorbed, so you should probably get back to your conversation at the table.”  I’m not a tough, nor cool guy, so I didn’t know what to say so I simply said “OK” and turned around.  Several friends at the table confirmed that they had seen the people at the table snickering and taking pictures of G with their phone.

It absolutely broke me and mama C’s heart.  There are so many reasons that we were upset.  First, it’s so hurtful to think that someone would look at our little man and think that something he was doing was funny enough to want to share and laugh with their own friends about in a private manner.  Second, it was a present reminder of what our kids will go through as they age…people will laugh at G, make fun of G.  And he’s already got so many challenges to overcome.  Third, it’s a lot of work to take G to a restaurant…he’s not easy to situate in a chair and he doesn’t love sitting on his own, so we usually end up holding him.  Naturally, we love holding him, but now on top of that effort, we have to realize that some people will possibly disparage or laugh at him.  Really?

The main thing that was hard to swallow was that these were people were obviously old enough to know better.  They must have been in their 20s to 30s.  Old enough to know better.  I would expect to deal with this type of thing from 5-10 year olds…but hipsters in their 20s?  Why is a little boy who has trouble holding his head up funny?  Why is there a reason to take a picture of him?  So he can’t look us in the eyes?  Why is that funny?  Why is that worth a picture?

Tough.  Tough.  Tough to deal with as a parent and a believer in Jesus.  Tough to think of what G and his sister will deal with as they grow.  How do I balance being a loving, protective father of my sweet little boy with being someone who does not retaliate?

“When they hurled their insults at him, he did not retaliate; when he suffered, he made no threats. Instead, he entrusted himself to him who judges justly.” – 1 Peter 2:23.

In happier news….here’s our little rock-star today partying in his “My Little Seat” chair.  We know many of the grandparents love videos, so we try to keep you entertained.

G and the VT

Lil G had an evaluation today for vision therapy. As usual, they came supplied with yet another diagnosis for G we hadn’t heard yet – legally blind. Hmmm, well…as I was complaining about his ophthalmologist and the varying information everyone she communicates with anyone she talks to, the vision therapist (VT) actually noted she thinks the doctor is doing G a favor. By indicating CVI, and that he is legally blind, he can qualify for therapy. He is right on the cusp of qualifying so she thinks the doc is trying to push him over the edge so he can every opportunity possible for assistance. I can support that. 🙂

G performed much better than the VT was expecting – while he didn’t connect with her (and 2 other folks with her), she saw him connect with me and the banana I was eating (of course, that little piggy!), indicating his brain connected me with good things to come. Whereas with strangers, his brain wouldn’t connect them to anything and therefore he doesn’t really care to notice them.

He was very interested in a bright orange fuzzy ball and she was impressed the way he tracked it and followed it around. We have a similar toy that is much smaller which he was interested in, but not nearly as much, indicating the size makes a difference – the bigger it is, the more likely he can process what he is seeing.

We talked about his love for light, and how he will focus on things when the blinds are open now – when he was a baby, he would do NOTHING but look at the window. She noted this indicates progress with his CVI and his brain learning to filter things out and focus. It requires more work for him to filter out the “clutter” in his vision field and really see what we want him to.

She is encouraged with his ability to use both sides of his body (many ACC kids have difficulty), and that he doesn’t seem to have issues with his peripheral vision. She noted the way we usually sit against the couch (solid without a pattern) which is against a cream wall – not much to clutter his vision and we are helping him learn what to focus on . Lastly we talked about books and focusing on those that aren’t too busy with solid colors and with 3D affects.

Having said all that, we decided to proceed with VT – they will come 2x a month for a few months, and then probably go down to once a month. We want to set him up for the best outcomes, and this will help give us ideas of how to help him process what he sees, without being overwhelmed.

I wish I had a picture to post. He is so smiley these days, its adorable. I will get one soon! Monday he will have  physical therapy, speech therapy, and vision therapy, and an ophthalmologist appt on Tuesday. Busy boy!

Coming Up Next: A Stander!

We met with Lil G’s Physical therapist and a medical device company today to talk about standers. Why, you might ask? Well, this little picture talks about the proven medical benefits of getting the little guy off the floor acheter de la viagra. stander

For G specifically, there is a bit of a concern that without putting weight on his hips,  he could experience difficulty later because those joints and muscles haven’t been used. The plan is for him to be in the stander for about an hour a day. We chose the EasyStand Bantam which has the flexibility of sitting, so he will have a variety of new viewpoints.

It will be several months before it gets here, but we are excited to have the process underway.  Next will be ordering him Supra-malleolar Orthosis (SMOs) – they will be used when he is in the stander to give him stability. The hope is that they will be sufficient without having to move to Ankle Foot Orthotics (AFOs) – they come up higher on his leg, which means they do more of the work than his leg muscles. The more we can make the little guy work, the better!

Oh, and finally, we have an evaluation scheduled with a vision therapist next Friday! We are anxious to see what she has to say, and will be a great segue for another opthamologist appointment the following Monday.

Musician in the making

This was a fun video we got today of Lil G and his new “musical instruments”. Someone commented to me recently about his “inchstones” as opposed to “milestones”, and this is one of them. His OT has been working for months on his next goal to bang two toys together. While he is only really moving one arm, he is really engaged and concentrating on the task and making noise which is tremendous progress!

Just in the past week, his sitting has improved greatly as well! He has more muscle control these days so he looks less floppy and can keep his head up for a little while to check things out. Still a long way to go, but we will take every inch we can!

Nine Months…

Baby G is already 9 months old! We can hardly believe how fast it is going. He had his 9 month check up and he measured up with:

  • Weight – 21 lbs, 0 oz – 75th percentile
  • Height – 29.5 in – 95th percentile
  • Head circumference 47.5 in – 98th percentile

Those of you who know Mama C or Lil C…wow! How did we get such a big boy in our family? And so tall!

His checkup was just fine, ears look great, lungs are working, heart is ticking 🙂 The really frustrating part was that BOTH the ENT and the ophthalmologist reported something different to our pediatrician then they had told us. Our pedi seemed to be not very surprised and stressed the importance that we have to be our own advocate. I expressed my ongoing displeasure with the specialists in this city and she validated my fears – there isn’t anywhere else to go. There are TWO pedi ophthalmologists in this entire city and they are in the same practice. We will give it a little more time and then look to go to Houston where we  may have more luck with better specialists.

The last item to note is that our pedi did mention a Neurological clinic at Texas Children’s that G might qualify for. She is going to see about getting him in, but if that’s the case, they would even be able to coordinate seeing all the specialists he needs to see over a few days in Houston, which would be awesome.

And here’s the kicker – in researching that specific clinic, it is apparently staffed and sponsored by the Blue Bird Circle, which my grandmother, who lil G is named after, was extremely involved in. That, my friends, is a God thing. 🙂

Last but not least, a new video 🙂

https://www.youtube.com/watch?v=IoQVUxQ-E0M

Chunk!

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In case you haven’t seen it in person lately, check out that belly!! Baby G is quite the big boy…last I checked, over 19 pounds. He has the big ole’ belly, creases around his ankles and wrists…there is no question he is thriving!  Daddy P and I are so grateful that his eating is one thing that is going surprisingly well. Many times kids with hypotonia (low muscle tone) have difficulty eating because the low tone also involves the muscles required to chew and swallow. With everything else, we assumed this would be a problem for him as well. Not to mention all those neonatalogists in NICU telling us he would never learn to eat and needs to be fed through a tube!  I am so very tempted to take him up to St. David’s just to show him off!

His speech therapist (who works on feeding at this point, not his joke telling!) came today and even she was quite amazed at the progress he has made, and decreased her visits to once a month! This is great news!

Our original goal was to have him eating baby foods three times a day. Not only is he eating 4-6 ounces of food a day, he is even tolerating chunkier foods with texture. We have stuck to fruits and veggies – he LOVES apple sauce, peaches, and mango. I will have you know he even ate a healthy portion of bok choy tonight! He is not too interested in finger foods, although he has been mouthing a teething biscuit. We are trying to get him used to the idea of self feeding, but with his lack of gross motor (and fine motor) skills, that will probably be quite some time.  I am hoping his healthy appetite will get him motivated to get those hands in his mouth!

Lil G turns the big nine months this week, so we will be checking in with his pediatrician. The past few months have been pretty low key – still working on his developmental skills of course, but he hasn’t been sick, the tubes in his ears seem to be working, and he has been mingling the young ladies at the local Gymboree class. Will keep you posted on what the pedi has to say, not to mention his official weigh in!

Supporting the wee ones

As you know, little G spent 17 days in the NICU viagra est il efficace. He was born at 37 weeks and 2 days, not that shy of full term. We now know his issues are related to his chromosome abnormality, but so many NICU babies don’t have genetic defects, but will experience a multitude of similar issues, simply because they didn’t make it to full term.

It was astonishing to see the itty bitty babies in the NICU born so very early – I don’t know how NICU nurses do it. Add to that so many of them were born early due to lack of prenatal care, and it is heartbreaking. So help us help them!

Daddy P, little G, sister C and I are walking for the March of Dimes this weekend, thanks to the peer pressure of a dear friend who specializes in high risk pregnancies. She was our go to resource as we learned more about G while in the hospital, and if she believes in March of Dimes, so do we!

Go here to help the little ones out!

 

Optometry Checkup – 8 Months

8667615443_414b87277a_cToday was G’s 8 month vision exam with our Pediatric Optometrist.  If you remember in our last visit, G was diagnosed with Delayed Vision Maturation which just means that he was delayed in his vision development but would eventually have normal vision.  At the time, the Optometrist told us that she did not think that G had Cortical Vision Impairment (CVI) which is more serious and has to do with how the brain processes the images that G sees.

Well, today we got the diagnosis that he probably has CVI.  I was pretty disappointed about it and Mamma C was pretty down as well.  CVI means that G will have a variety of outcomes for his vision, but he will most likely never have completely “normal” vision.  It also means that he will have many challenges when it comes to reading, dealing with crowds, etc…

Obviously, it wasn’t the best news, but it’s not the end of the world either.  We have been encouraged to see G make progress in tracking objects and focusing on us more recently and that doesn’t seem to be plateauing or slowing down.  He’s still just as smiley as ever.  We’re just a bit concerned as to how he’ll be impacted by his vision impairment going forward.

The next steps for him involve getting him hooked up with vision therapy through Early Childhood Intervention (ECI).

Hi Ho, Hi Ho, its off to the ENT we go…

Today was Little G’s follow up appointment with the ENT, and I went in as if I was preparing for a battle. Research papers in hand, a second opinion from a world renowned pediatric ENT, and most importantly, mother’s intuition that G CAN hear!

Well, to my surprise, there was no battle. While he was equally disappointed that the sedated ABR didn’t come back great, he also didn’t feel we needed to jump right back to a sedated procedure. He had been pressuring me for a CT scan to check the middle ear bones, and he didn’t even bring it up. (And I am whole heartedly against it at this point!)

So, we will go back when G is a year and see what is happening. The crazy thing is, that is just a few months away!!  Time is flying!

In other news, G is doing well with his therapies – he is much less “bobble head” these days when he sits, and the nanny just mentioned he keeps rolling from his side to his belly, which is a new development. He will go back to the eye doctor next week, and we are hopeful they have seen progress in his vision and we are only dealing with near sightedness.  He is eating great and doesn’t make terrible gagging noises anymore, so surely that is progress!  All in all, things are moving along!

 

I think I can, I think I can…

I must admit, I have been feeling a little discouraged recently…now that G is 7 months, rounding up to a year, it seems to hit a little harder home how far he has to go to reach his milestones….when he was 6 months (which still rounded down!), it seemed there was all the time in the world for him to get there, and we were so hopeful he would catch up to his peers in no time. Well, here we are 7.5 months and G can’t sit by himself, roll over, babble…but he sure can smile and giggle, which is awesome. We thank God every day for his little personality which is starting to shine.

Daddy P and I started to wonder if his low muscle tone would go away or if he would be “floppy” all his life.I expressed my concerns to his physical therapist this week and she shared that there is a wide range of “normal” muscle tone, and you can see it just looking around – those folks who slouch have lower muscle tone, and those who sit super upright and stiff have high muscle tone. The important lesson is that while G has low muscle tone, it doesn’t mean he isn’t strong – strength and muscle tone don’t go hand in hand. She did some exercises with him to show his strength and prove to me his muscles do work in there, they just need to get stronger. He has come so far in these 7 months that she does feel confident he will get there. While she can’t say for sure that he will be able to sit or stand or walk, she does feel confident that he will someday.

G is interacting more with his big sis too which is awesome to watch – they played “row, row, row your boat” the other day and he was over the moon. He lights up the minute she is around, and wherever she is, he will kick and squirm trying to get to her – I know she is a huge incentive to him to get mobile, and she loves running around to keep him paying attention!

Lil G received the book “The Little Engine That Could” for Easter and I read it to him today…keeping in mind his attention span is usually a matter of seconds, he sat through that entire book giggling and kicking and wanting more.  He works so very hard every single day to overcome his physical deficits, and in his own little way, he was showing me how much he knows he can do it! He is a huge inspiration and an important lesson to not take one single movement for granted. I love that little guy and can’t wait to see what his next miracle will be.

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