Monthly Archives: August 2012

A Step Back

Well, the saying goes…”2 steps forward, and 1 step back.” That’s been the case with Braxton since the beginning.  He accomplishes something great or we get good news, and then all of a sudden something isn’t right. =/

In the week or so before we ended up in the hospital with pneumonia, we noticed a decline in Braxton’s appetite.  Just so you know where he’s fallen from. Braxton was on breastmilk for 10 months (yes, I pumped all that time for him) and then on Similac Advance Formula for the last 2 months of his first year.  He was up to taking 6 ounces, 5 times a day.  He has the G-Tube, but we offer him a full bottle and let him drink what he will, then we put the rest through his tube.  He was drinking anywhere from 4-the full 6 ounce bottle ANNNDDD even eating a FULL jar of pureed baby food 3 times a day…no you know where all his rolls came from! Hehe Well at his 1-year birthday his GI doctor switched him over to Pediasure instead of whole milk.  Since Braxton was not eating a “normal” diet for a one year old the Dr did not want him to become malnourished and start losing weight. Pediasure would give him all the calories he needed plus all the vitamins and nutrients he needs. Anything we gave him above that would just be extra and useful in preparing him to learn to eat on his own.

At first, Braxton was throwing up EVERY feed as soon as we switched over to Pediasure.  Turns out with the higher calorie content of Pediasure, it was like we were overfeeding him compared to the formula he was on previously.  Basically it was like we had jumped from 6 ounces to 8 ounces of formula. Well naturally that would cause him to throw up….but I’m afraid from this point on the damage was done.

We played with the volume a little bit and gradually worked him back up to the 6 ounces 5 times a day. But, he stopped taking the bottle and stopped eating the pureed foods. 😦 We got him up to drinking about 3 ounces but still he would only take about half a jar of baby food as opposed to the full one he was getting before.

Well before the hospital stay, he pretty much stopped eating altogether.  We had to put his entire feed through his G-Tube and he wanted nothing to do with the pureed foods.  Working with our speech therapist, we decided that because of all the vomiting he had done that his throat was probably sore and it was actually hurting him to eat. As he began to associate the hurting in throat or nausea with feeding, he just decided to stop eating.  We will eventually stop doing something that causes us discomfort or pain, and that is what Braxton did.  Then he ended up in the hospital and didn’t eat for 3 days [he was on IV fluids getting the fluids and electrolytes he needed, but no food].  Now, Speech therapist says that in that short time it could be that his stomach shrunk so the 6 ounces we are giving has again become too much for him. Blah. So we’re back down to 5 ounces and gradually working back up to 6.  Thankfully the 5 ounces is staying down, but he seriously just wants absolutely NOTHING to do with the bottle or food.  We’ve only been able to get him to take mayyybe an ounce of his bottle, usually half an ounce and only like 4 bites of food.  This is a HUGE regression and not a good thing at all.  😦 He’s also been teething for what seems like FOR-EV-ER! He had a corner of tooth poking out, but it’s gone back into the gum. His gums do like a bit swollen and he’s gnawing on everything he can get his hands on, so this could also be contributing to his lack of appetite, but we don’t know for sure.  So many variables here.

Between us and the speech therapist, we are at a loss.  Pretty much out of ideas to work him back up to eating like he was before.  Called his GI doctor today, but haven’t heard back.  He would be the one to give us other suggestions or make some kind of change.  We see him next Monday anyway, but I thought this was enough of a concern for him to address sooner rather than later…he must not think so or he would have called back. UGH.

Uber frustrated.

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Braxton gets his Hearing Aids

Today was the day!! I have to admit, I was hoping that as soon as we put the aids on his little eyes would light up and he’d just start talking away…unfortunately that didn’t happen.  The Audiologist explained everything to me as best she could, but I’m more of a hands-on person. Experience is the best teacher, so it’s going to take some time for us to get the hang of it all.  Hey, I figured out his G-Tube, I’m pretty sure I can handle this too.

So, the entire time we were there waiting Braxton was just as wiggly as he could be! He was sitting in my lap just rocking back and forth and smiling like crazy.  As soon as the audiologist put the aids in, he just stopped.  He could obviously tell something was different, but he didn’t quite know how to react. Luckily, it wasn’t to just start shrieking and crying uncontrollably *whew*  He started looking around and just taking everything in.  Thankfully, he did not immediately grab for his ears and try to pull them out.  I really don’t foresee that being a problem with him, but only time will tell.  We stayed with the audiologist for a little while to make sure I had all my questions answered.  The entire time, Brax was just as wide-eyed as he could be.  Big sister came with us to help take photos and video, but  turns out a 6 year old isn’t the best photographer! There are more pics of herself than Brax on my phone! You can see her handy work below 😉

After the appointment, I had to go back in to work and took him with me to wrap up the day.  He was pretty calm there, just continued to look at his surroundings and really just take everything in.  He even took a little nap and didn’t really startle awake with normal office noise.

Anyway, this is a VERY exciting time for us all! This is the first step in really advancing Braxton’s speech.  Hopefully the aids bring him up to “normal” hearing and we start getting some meaningful words out of him…I can’t waitttt!!! He’s going to be talking up a storm in no time…I’m sure of it!

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“Little man with his hearing aids! I’ll update more later, but we finally got them and he immediately just started looking around. You can def tell he is hearing things he hasn’t heard before and is more aware of his surroundings. I’m super excited for him!! :)”

Here is Braxton and his aids, which are surprisingly much smaller than I thought they would be!

Braxton with hearing aids

Braxton wearing his new Phonak NioS H20 Hearing Aids

A few more pics…mostly taken by a 6 year old haha

For more detailed information on the hearing aids, see this post.

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Misplaced Emotions

So, here’s the root of my reasoning behind starting the blog.  All too often, I have feelings that I just can’t share with anyone else besides Joseph. I need some kind of outlet to put all these emotions down.  Not necessarily looking for anyone to have pity on me or offer advice, but getting it all out is good for me, and if anyone comes across it I just want them to “listen.”  This is the perfect way to do that.  Plus, it’s really a great tool for keeping family and friends in the loop.  I wish I could remember everyone who asks for an update, now you can just look for it yourself 🙂

The other day, I posted a video of Braxton trying to crawl on facebook. I was super excited about it….then I realized Braxton is almost 14 months old and barely crawling.  Another friend later posted about how their 10-month old was already walking and had several teeth.  She was just posting as another excited mother, not to spite me. But, as a mom, you can’t help but see that and think man my kid is older and not anywhere near that.  I see post after post like this, all the kids younger than Braxton hitting milestones left and right way ahead of schedule. I start to feel like maybe I’ve failed him in some way.  It really sucks. Anything that makes you feel like an inadequate mother is disheartening.  Then, I remembered that I just need to step away.  Braxton is a Special Needs child. He’s not like other kids, he’s never going to be.  And truthfully, the fact that he is ALIVE is a miracle itself! He wasn’t supposed to make it and he did. He continues to thrive and surpass expectations, and that is what I should be proud of.

Even “normal” kids develop differently and hit milestones differently.  But, for some reason we just can’t seem to keep ourselves from comparing our kids. Why do we do that?? It’s unfair to our kids and it’s unfair to ourselves.  We all do the best we can to raise our kids and overcome challenges that we face daily.  Just a hard pill to swallow I guess.  I took such good care of myself during pregnancy, I’d say even better than when I was pregnant with my daughter, and for what? My kid has all these issues to deal with.  It’s really easy for me to slip into these days where I blame myself and feel like there is something more I could have done. But the simple fact is..there isn’t.  There isn’t anything I could have or should have done differently.  This is just the hand we were dealt, and I’m going to do everything I can to ensure my son’s success.  He’s going to be ok. I’m going to be ok. We’re all going to be ok.

We’ve got a great team of doctors and therapists and they are all TRULY on our side.  It’s amazing how great they all are and how willing they are to help us.  To help us get the services we need and help us understand our treatment goals.  We’ve met a lot of people over the past year, and I’m lucky they’re all on our side.

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Hand Surgery

This week, we also are scheduled for hand surgery.  Braxton has bilateral syndactyly of his pinky and ring finger.  The skin is webbed between the fingers, but the doctor is confident it’s a simple snip to correct it.  He will be in a splint for about a week and then just in a bandage for the next week.  He will need a skin graft on one hand that they will take from the inside of his arm.  Poor baby, think it’s gonna be harder on mom and dad than him.

While he is in for surgery, we are supposed to have bloodwork done for Genetics and Endocrinology.  Hopefully, this gives us some new information as to whether or not there are any abnormalities in his genes or growth hormones.  Gah, so much to keep up with.

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Hearing Aids

So Braxton has been diagnosed with Mild to Moderated Bilateral Mixed Hearing Loss.  Thankfully, the audiologist at Dell who did his ABR says that he can get just about normal hearing with the help of some hearing aids.  This was in May.  Here we are 3 months later and no hearing aids! This in itself has been a mess.  We tried to get set up through our regular ENT who has an audiologist in store, but with our insurance we had to go to a special clinic.  Well that clinic doesn’t work with kids under 2, so they had a big process about making an exception for him.  We went in mid-July to order hearing aids and get molds done of the inside of his ear so the cushion for the aid could get made. We were supposed to pick them up 2 weeks ago.  We got a call that the warehouse somehow lost or never got the molds so we had to do them again.  They said they could be sent via FedEx, but the fee could not be waived.  Joseph decided we should just pay out of pocket to be sure they come in this time, and if not, at least we’d have a tracking number this time.  We go back to the Doctor’s office tomorrow to pick them up *hopefully*

I’m really very anxious to get them.  Up until now, Braxton hasn’t really said any meaningful words.  He’s babbling and cooing like he’s supposed to, but we’re really unsure what he can hear.  The audiologist said he can probably hear when he’s right in front of us, but most likely not from across the room.  Can’t wait to see his face when he can finally hear mom talking to him 🙂

Hopefully he takes off speech wise now too.  So much to look forward to with this next step!

[For update and additional information on the hearing aids, see this post.]

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