Tag Archives: special needs child

I Wonder What He Thinks About

Staring outside

Staring outside

Joseph and I often find ourselves wondering just what Braxton thinks about. He is still not verbal at all and hasn’t developed enough coordination for even simple sign language. He makes some sounds, but they have no meaning other than to hear himself “talk.” I love when he does it, and occasionally “mama” or “dada” comes out but he’s not usually talking to either of us. One day, those precious sounds will mean something, and I absolutely can’t wait for that day.

Braxton is usually in his own little world and doesn’t fuss much about anything. However, he has recently found his voice and definitely lets us know when he’s not happy! He’s learning to stand, but getting down is a little scary for him, so he’ll stand and cry/grunt/shout until someone comes to help him down! He’s getting better about getting down on his own, but there are times he gets way into a crocodile tears act just because he doesn’t want to do it himself. Surely, the most vocalization we’ve had out of him since birth. He does actually have a pretty loud cry now when something is really wrong, but when he was born it was so soft and you’d almost miss it unless you were right next to him. There is NO mistaking it now!

His all time favorite thing to do now is crawl over to the patio door and stare out the window. He does this at daycare too. He could literally sit there all day and just stare outside. I wonder what he thinks about as he sits there. The backyard isn’t all that exciting. At daycare he can watch the big kids play outside, perhaps a bird or two, but mostly he just watches the trees in the wind. Is he just taking it all in? Longing to be outside? Wishing to walk and run like the other kids? I wonder exactly what he sees? Is his vision worse than we think? I wonder what he hears? Can he even hear the gentle breeze and the birds chirping? Does he hear it and it’s muffled without his hearing aids?

Whenever we walk outside he stares at the sky… Is he talking to God? Does he know it is by some divine intervention that he’s even here? Is he thanking Him for his life, wondering what his destiny is? Is he talking to relatives who have passed and are watching over him? It would be nice if any of that was true. I just don’t know what it is that fascinates him so about the outside. Perhaps it’s a reminder for us to slow down and just watch the peaceful nature of the trees swaying in the wind. I like to sit with him and point out the things he might see…the trees, the grass, a bird – understanding that he doesn’t comprehend me now, but then again maybe he does. I’m starting to see that he pays a lot more attention than we think. He’s starting to recognize things and develop preferences for toys, activities, environments. He’s also developing quite the personality. It’s surely always been there, but he is developing more and more and his playful nature exudes from him.

I long for the day when he can tell me exactly what is on his mind, or ask me all those annoying questions about why things are the way they are, but for now I am simply fascinated by his curiosity and childlike wonder, and appreciate his reminder that perhaps I too should slow down and just watch the world in peace.

See The World Through a Child's Eyes

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Farewell 2012!

I cannot believe another year is coming to a close! I seriously think once you have kids it’s like someone presses fast forward on your life. ¬†We’ve also been so busy this year it’s no wonder I have no idea where the time has gone. ¬†Braxton has come so far this year and we’re so excited to see what 2013 has in store for him. ¬†Cruising? Walking? Talking?? Eating?! All of the above??! Only time will tell. ¬†Braxton is doing so well and doing everything in his own time. ¬†With every milestone, we celebrate with him and everyday I’m amazed to witness all that he’s accomplished.

Noteworthy Accomplishments:

  • Oral Feeding – Before we ran into issues, Braxton was able to drink 4-5 ounces from a bottle and eating 4 oz of pureed foods 3 times a day!! We were fairly certain he’d have his G-Tube out by the end of the year…unfortunately, he had a major regression and stopped taking anything orally. ¬†He’s making some progress now and we’re hopeful we can get him back here.
  • Rolling Over – Braxton was about 9 months (March 2012) when he was finally able to roll over from front to back and back to front.
  • Unassisted Sitting – Braxton was finally able to sit up on his own without assistance (pillow, boppy, mommy etc) at about 10 months (April 2012) he was a little wobbly for a while, but by May he had it down pretty well.
  • Up on All Fours – It wasn’t too long after rolling that Braxton started pulling himself up on all fours and rocking getting ready to crawl (even though actual crawling came much later)
  • Getting from a sit to crawling position – Braxton mastered this at about 13 months (July 2012) and was able to get himself from sitting down to his belly and up on all fours getting ready to crawl.
  • Pivoting from all fours – Once Brax was able to get up on all fours he wasn’t able to crawl, but he learned to pivot himself around to get where he wanted to go
  • Scooting Backward – Backward movement is important developmentally, and we were so excited to watch Braxton finally be able to scoot himself backward to get where he wanted to go. He’d scoot a little, sit up, get down and scoot some more until he got where he wanted to go.
  • Crawling – And finally, at 15 months Braxton started crawling. ¬†He is all over the place now!
  • Kneeling – Now that Braxton can crawl he can get himself to a kneeling position to play with toys and back down to crawl to the next toy
  • Pull to stand – Braxton is now pulling up to a standing position on toys and furniture! Getting back down is still a little scary, but he’s getting better. ¬†It won’t be long before he’s cruising along the furniture and then running away from us!
  • FIRST BIRTHDAY! – Braxton turned ONE June 24, 2012 – amazing in and of itself. He wasn’t supposed to make it home from the hospital, so to see ONE was a true blessing. As is every day he is here with us.

Medical Stats: 

  • I wish I’d kept better count, but we’ve had about 3-4 specialist appointments every month this year. Looking at our calendar this year I count about 48 appointments with specialists. [Feels like we were in the pediatrician’s office every 2 weeks due to Braxton’s congestion, so that adds quite a bit]
  • Therapy – I think starting at the beginning of this year we were up to 2 visits weekly for Speech and Physical therapy. ¬†We started Occupational Therapy in August, adding another 2 weekly therapy visits. ¬†That’s 6 therapy sessions per week for Braxton. ¬†Thankfully, we have in-home therapy sessions, so we weren’t driving all over town for therapy. ¬†We also had Vision therapy through the school district that came out twice a month. ¬†She brought out Orientation and mobility services twice a month as well.
  • Next year, I’ll actually tally everything up…this year, I just know it’s been a lot!
  • Braxton had to go under anesthesia twice this year, once in April to have his ear tubes placed and probing & irrigation of his tear ducts. ¬†An ABR to test hearing was also done at this time. ¬†In May, he had a light anesthesia to have the ABR repeated since the first one was not accurate due to fluid draining from his ear. ¬†The second time was in August when he had his hand surgery and another ABR to confirm his hearing results.

So, I started this blog on August 19th this year and we’ve had about 8,700 views in just 4 short months! You guys are awesome for visiting and reading and taking this journey with us!! WordPress put together an awesome little stats page for me to share with you and you can see that below.

Some of my personal favorite posts are:

Some of YOUR favorite posts were: [based on most page views and not listed above]

Some of my favorite pics this year: ūüôā¬†

Stats from WordPress

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 8,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 15 years to get that many views.

Click here to see the complete report.

HAPPY NEW YEAR!!!! MAY 2013 BRING US ALL BLESSINGS AND HAPPINESS!

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The Silver Lining

Silly Face

Handsome Man ūüôā

How fitting that I posted about the rain of sickness upon us, that today amongst the clouds we found our silver lining. ¬†Today, we saw our geneticist and she had some pretty exciting news for us. ¬†We had previously discussed Whole Exome Sequencing with her earlier this year, but since it was still fairly new, most insurances weren’t yet picking up the cost for it. At a mere $8,000 I can’t believe we didn’t just do it anyway! -__- *sarcasm* Who has an extra $8,000 lying around for a test like that?! Anything we had in savings has certainly been used in 17 months of caring for Braxton and his countless doctors appointments. ¬†At this point, she also explained that Blue Cross Blue Shield basically considers genetic testing as “experimental,” I don’t see how any thing that could help determine need of future healthcare costs could be considered “experimental,” but that’s beside the point, when she previously discussed it with us, it was out of the question.

I should back up a moment and explain a little about just why this test is so important. ¬†This is in my own way of understanding the test and in no way totally scientific. ¬†Whole Exome Sequencing is a way of testing specific regions of DNA that we know the functions of. ¬†There are some 22,000 genes in our body and at this time researchers only really know what about 5,000 of them do and/or specifically control. ¬†Exome sequencing breaks those 5,000 genes down into regions and can tell what region controls or affects different parts of the body. ¬†For example, researchers know the specific gene sequence that signals if there is a defect on the 21st chromosome in our body which signifies Down Syndrome. ¬†Because Down Syndrome is now so well known and studied exome sequencing is not necessary to detect it, but for other syndromes that are rare or still unknown (like DS was previously) Exome Sequencing is excellent in telling doctors and researchers exactly what part of a person’s DNA is different. ¬†This could then tell doctors exactly what gene has a defect and what that particular gene controls. ¬†This in turn could help prepare parent expectations as for prognosis in their child’s life. ¬†If there is a gene defect that controls motor movement a parent would then know motor skills like crawling and walking need extra help and attention. ¬†It is also possible to have a hybrid of syndromes. ¬†A child could have signs and symptoms of two different syndromes and not fit into either of them perfectly, exome sequencing could tell doctors exactly what two syndromes are at work and help formulate a better plan for the future. ¬†This is WAY oversimplified, but it’s what makes sense to me and hopefully to you. You can check out this link for more – Exome Sequencing (Wiki)¬†here is some info from one of the companies who performs the test – Ambry Genetics Exome Sequencing¬†¬†From my understanding, there is also Whole Genome Sequencing which actually tests all 22,000 genes as opposed to only the 5,000 that we know. Talk about information overload! Braxton has already had all other tests that are lower cost that could potentially give us answers, they were all returned as normal. ¬†The two isolated genes our dr had tested also came back normal. ¬†Continuing to grasp at straws and test one gene at a time is time consuming and incredibly expensive. Far more expensive than doing this more all inclusive test now and getting it over with.

I understand, that although this would tell us what gene has a mutation on it, it may still not answer our questions. ¬†If it turns out to be a rare disorder we may have no numbers to go off of, no prognosis, no expectations, but at least we’d have a cause and a name. Technology is ever evolving and in time we’d know more, so to know NOW the root of the problem is extremely beneficial. ¬†The test would also help us to determine if it is some random genetic mutation or if all future children could have this issue. ¬†Stop right there grandmas! There are NO new babies on the way now or in the near future!!! hahaha But, it’s something we need to know so that if way, way, way, way, in the future we decide to have more children we’ll know their chances of having the same syndrome. ¬†The results also wouldn’t necessarily change our plan of action with regard to therapy. It’s obvious that whatever syndrome it is, it is causing developmental delay in all areas so all the therapies we have in place are still necessary. ¬†It could however offer answers as to WHY the delay is there and could potentially help our therapists better address the issue. ¬†Bottom line, this test is what Braxton NEEDS right now. ¬†If Braxton is accepted in to the NIH program we told you about earlier, they would do either the genome or exome test as part of their research. ¬†NIH is still reviewing Braxton’s records and it will be quite some time before we find out if he is accepted for that program. ¬†Buuut…..

Happiness

Happy baby..yay for good news ūüôā

Back to the good news. ūüôā We may NOT have to wait for NIH! Our geneticist told us today that she felt we’d exhausted enough testing and she recommended we move forward with the Whole Exome Sequencing. She said some insurances are picking up the cost of exome sequencing as long as prior authorization is obtained first! Although they told us previously about BCBS and genetic testing, (surely we can’t be the only ones with BCBS) they assured us that no one they have submitted has been flat out denied. ¬†The biggest problem has been out-of-pocket expenses on the family. ¬†Thankfully, we are near the end of the year and our deductible has been met, as well as our out-of-pocket maximum, so with a little luck, if Blue Cross approves our pre-auth within the next 2 weeks, it is possible we will have our blood drawn and sent off before the end of the year! Hopefully, if there is still an out-of-pocket cost it won’t be too much so that we can have this test done and finally get the answers we need. ¬†Such an amazing silver-lining. ¬†Even amidst the storm God reminds us that He’s here….

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G-Tubes: A Blessing and A Curse

G-Tube

This was after his hand surgery, but you can see the button and extension in the picture.

We had a lot of family and friends over this weekend and naturally, questions about Braxton arose. Nothing bad, but just makes me think more about the little miracle we have. ¬†Braxton has had his G-Tube since he was 2 weeks old and I remember very clearly how daunting the idea was. ¬†Now, almost 17 months later I have found so much that I love about Braxton having a G-Tube, and so much that’s not so great. We often get asked about him having his tube and how difficult it is, whether or not it bothers him, and so much more. ¬†For us, this is “normal,” for others, it’s new territory. ¬†Joseph has even said he hopes all our children need tubes..jokingly of course, but we’ve grown so used to it over time and have realized several advantages. Here are just a few things I’ve found I like and some that drive me nuts!!

A Blessing

  • First and foremost, medicine – have you ever tried to get a child to take medicine?! If so, you are well acquainted with the wrestling match that ensues. ¬†If not, allow me to enlighten you… No matter how “awesome” you make it seem or how much you flavor it, any kid sees a syringe or cup full of medicine and they’re out of your sight faster than you can blink. If you’re fortunate enough to catch them, you literally have to pin them to the ground sometimes and make them take the medicine! Maybe not always, but more often than not this is how it goes down. ¬†With the G-tube you lay him down open up the medicine port and push the medicine in followed by a little water to make sure it’s in the tummy. ¬†No screaming, no wrestling, no tears…yay! Definitely my favorite thing – especially since Braxton has been on medicine since birth basically.
  • Set it and forget it – With the G-Tube we can feed Braxton anytime, anywhere, and on the go. ¬†We don’t have to wait to run an errand or go to an appointment because of feeding time. ¬†We simply hook up the pump and Braxton feeds on the way. ¬†Actually pretty convenient. When he was younger we had continuous feeds overnight [we fed him over the pump slowly for 6-8 hours] We’d set his pump to only feed him a few milliliters at a time so that 4 ounces lasted about 4 hours. When the pump beeped that the feeding bag was empty we poured in another 4 ounces and set the pump again. From the beginning, I think this helped Braxton sleep through the night because he was constantly fed, and mommy and daddy got plenty of sleep since we were literally awake 5 minutes while we set up the 2nd feed of the night. Thankfully, we didn’t have too many sleepless nights due to feeding every 2 hours.
  • Sister can help – from the moment I found out I was pregnant Aileen was dying to be able to hold Braxton and feed him a bottle. ¬†Once we got the tube I thought her dream would be crushed, but we found other ways she could help. I’d let her help pour the milk in the bag, and even showed her what button to push to turn the pump on and off so now can run over and turn the pump off when it starts beeping or even do it in the car while I’m driving.
  • Always eating – Braxton gets his entire feed all the time. [With the exception of the vomiting spells he was having] Braxton is on a set calorie intake so we know exactly how much he needs to be able to gain weight in a healthy way. ¬†Some kiddos won’t eat when they aren’t feeling well and end up dehydrated. When Brax isn’t feeling well he may have bouts of vomiting, but we can always dilute the feed with pedialyte and/or run the feed a little slower to make sure he still gets it. We don’t have to adjust the feeding schedule just because he’s asleep or anything like that. He eats on time all the time.
  • Easy to learn – Sure, it was pretty scary at first and I can’t tell you how many times there were gaps of air in the tubing because I just couldn’t figure out how to set it up correctly, but it was very simple to learn and we’ve been able to easily show others how to use it without any issues.
  • We can still play. – While Braxton is eating we can still play and interact with him. Sometimes I’ll sit him in a chair with some toys in front of him on a small table and I can work with him while he eats. ¬†No jumping or spinning, but we can still have fun. ūüôā

A Curse

  • Beep, Beep! – I dream of that dang beeping sound! When the feed is finished the feeding pump will beep to let us know and we can turn it off. No big deal huh? Well, sometimes the pump beeps for no reason! It will say “No Flow” or “No Food” and the clamp on Braxton’s extension is clearly open and the bag is clearly full of formula but still it’s beeping. ¬†Usually it’s that there is some small kink in the line, piece of food got stuck in the tubing, or the sensor has something blocking it. ¬†There have been times that I “fix it” lay back down for bed and the SECOND I get comfortable…BEEP, BEEP, BEEP!!! Oh man, had a few nights that this went on for several hours…our pump was almost smashed with a hammer and thrown out the window!
  • Leaks – Go to pick up Braxton and his shirt is completely SOAKED! Not from spitting up, but because the extension came loose, the balloon lost water, the medicine port opened and leaked all over the floor, or the tube came loose from the extension! Talk about a big mess to clean up.
  • It pops out!! – I still remember the first time the button popped out balloon full and all. We were so scared. I quickly remembered the steps the doctor told us regarding how to put the button in, but I’d never done it before. It was either try to do it or rush to the ER 13 miles away and risk the hole closing and needing surgery again…I tried and I got the button back in just fine. Braxton cried because of course it hurt having it pulled out, but we were able to console him. ¬†Scary for sure, but glad I figured it out.
  • Medical Supply Company ¬†– We can’t just pick up an extra bottle or pump or bag at the grocery store. All the supplies for feeding HAVE to go through a Durable Medical Equipment (DME) company and ANY changes have to be authorized and it’s nothing that happens overnight.
  • Ball and Chain – Now that Braxton is mobile, it’s becoming increasingly challenging to get him to stay still for a feeding. ¬†We still have the pump over 30 – 45 minutes and anyone can tell you getting a toddler to sit still more than 2 minutes is impossible. ¬†Braxton will crawl across the room with the tubing stretched tight in the 30 seconds it takes to throw something away. We’ve had to sit him in a chair with lots of toys to try to keep him content, but I don’t think that will last much longer!
  • Clothing! – We had so many cute outfits we bought before Braxton was born that he couldn’t even wear! ūüė¶ Anything with a zipper was out of the question because it interfered with overnight feeds, couldn’t have him connected and zipped at the same time unless of course we cut holes in the outfit. ¬†I also have to have him in onesies as wearing plain t-shirts I’m afraid of the button getting caught on something and coming out. There is adaptive clothing available, but some of it is pretty pricey and there is plenty that works instead for now.
  • Daycare – Fortunately, we found a daycare that isn’t designated as “special needs” but is willing to work with us and learned to use the G-Tube and they’re just amazing. But finding childcare is very difficult. ¬†The moment I mention feeding tube everyone turns us away. ¬†Since we’ve moved I found no one in the area to care for him, so we’ve stayed at the daycare by our old house. It’s a little out of the way, but I love them and Braxton is happy there so we’re happy. I just fear moving further away…hopefully we don’t have to anytime soon.

I’m sure there are many other things I could add, but I’ll think of them later..This is simply our own experience with a G-Tube so feel free to share your own in the comments! I’d love to read some of your pros and cons of feeding tubes ūüôā

 

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Baby Steps

It’s been a pretty good week for us and little by little Braxton is continuing to make progress. ¬†He’s crawling like crazy! One minute he’s at my feet and the next he’s in another room. He’s fascinated by everything around the house. He loves to go to the windows and pull the curtains back and forth. I’m constantly moving him back so he doesn’t pull them down! These days sound something like…”Braxton, get down – Braxton don’t touch that – No sir! – Braxton come here!” Hahaha we’re really in for it. He’s starting to really try to pull up on things to stand. He can get to a kneel and he pushes up on his feet but can’t quite stand up yet. It’s only a matter of time though!

We continue to work with our speech therapist to get Braxton eating again. ¬†The periactin seems to have at least gotten Brax to be able to tolerate a full 8 ounce feed every 4 hours and he’s eating a little by mouth. ¬†We’re really trying to work through the aversion he’s developed so just little by little introducing things by mouth. Basically starting over like we did when we started solids several months ago. ¬†He’s making some progress though. ¬†We started using a Z-Vibe with our therapist which has been working great! We decided to go ahead and purchase one ourselves to continue making forward progress. ¬†The Z-Vibe is a vibrating handle with interchangeable tips to help with feeding and oral motor stimulation. ¬†One of the tips is a textured spoon and with Braxton still teething he’s done really well with it. ¬†He definitely likes the vibration and the texture against his gums and is eating with it too. ¬†Our personal Z-Vibe came in today! I tried it for his afternoon feed and got him to eat a little less than an ounce! Considering we’ve only been able to get him to take about 5 bites, this is really exciting!! He’s taken about half an ounce or a little more with the speech therapist too, so it looks like we’re making progress. ¬†ūüôā

Also trying to get a handle on the Gastric Dumping, so we’ve started to monitor blood sugar levels throughout the day too. ¬†We went last week to to see the Endocrinologist to get a Glucose Monitor and learned to use it. Just one more step in his feeding process. ¬†Didn’t think I’d be able to poke him so much to get his readings, but he doesn’t seem to fuss about it too much thankfully. We also followed up with the Audiologist this week to get new ear molds made for Braxton’s Hearing Aids as he is continuing to grow. She adjusted the volume levels on the aids too and it seems like he’s already responding better!

Baby steps add up to giant leaps. May not seem like much now, but with every step Braxton makes he gets closer and closer to every goal in place.

Today was picture day at daycare ūüôā

Always so serious

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