Monthly Archives: August 2012

When it rains, it pours

Yes, I’ve said it before, and no, it won’t be the last time either.  We had an extremely busy morning today.  Braxton woke up today with green gunk draining from his ears =/ Thankfully, we already had an appointment with his pediatrician scheduled at 8am.

Turns out Braxton has a double ear infection [his first since he had his tubes placed in April] and a sinus infection. That explains all the green junk from his ears and in his tummy yesterday.  More antibiotics to help the sinus infection and ear drops for the ear infection. Poor kid. I swear we’ve been in the pediatrician’s office at least every other week for him.  He’s been on more antibiotics than I care to mention.  And with the ear drainage we can’t put his hearing aids on. 😦 We’ve got to let his ear have air and let it drain and heal before we can use them again. Terrible setback.

After the pediatrician’s office we headed over to the Hand Surgeon’s office for Braxton’s post-op visit and bandage change.  Stupid mom forgot to give him pain medicine before we got there. I have NO idea why I didn’t think about it before we got there. But my heart just broke and I kicked myself once he started screaming and wouldn’t stop.  He was happy when the bandages came off, but once they started cleaning the site and putting on fresh bandages he started crying uncontrollably and it just tore me up.  PA said the surgery site looks good and is healing well.  The skin graft looks ok too. The stitches were still in place and she said they’d dissolve on their own. But oh my goodness! The Dr told me the site was small and only about half an inch, that graft is definitely NOT small! Braxton has a 2 inch gash on his arm right now. Sure, once he’s older you won’t even notice it, but for now his little arm looks terrible 😦 It took a good while for me to be able to calm him down. He cried off and on the whole way home.

Once I got home I gave him his pain medicine, went ahead and gave the first dose of antibiotic, and put the ear drops in. Even still, it was a good 20 minutes before I got him to really calm down.  I hung out with him for a minute before I had to head out to work and take him to daycare :/ He had a pretty good day though. I called to check on him a few times and when I picked up they said he had a pretty good day. No vomiting today (yayyyy) and he was actually pretty happy and laughing and smiling with the teachers and the other kids.  I can’t say enough nice things about our daycare. I love them all and I’m so grateful they are so good with Braxton. They all love him so much and take good care of him.

Now if we could only get this storm to pass, everything would be wonderful again.  I sure hope these meds kick in quick!

 

Brax finally resting after a long day. Poor kiddo.

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What’s WRONG with him?

If there was ever a question I absolutely abhor hearing, that would be the one. [Notice, I used abhor, not hate, not dislike, but abhor – extreme repugnance or aversion; to detest utterly; loathe – get the idea?] This one simple question can cause so much damage and most don’t even know it.

Let me first make clear, I don’t care what other people think or have to say about my kid. It doesn’t make US treat him any differently, love him any less, or change his plan of care. Kids, however, are another story. Sure, he’s not old enough now to understand the inquisitive eyes, but one day he’ll see just how cruel the world is and wonder what’s really going on. We took Braxton out a few times over the weekend after his surgery, and you would NOT believe the ugly looks he got. While I may just be mostly venting here, maybe you can take away a lesson in tact and teaching yourself or your children how to really be tolerant of people who are different. Be it a different race, different religion, or different abilities, everyone deserves to be treated equally.

At first glance, most wouldn’t know that Braxton has any kind of special needs. Add on a g-tube extension, some hearing aids and some bandages covering his hands up to his elbows and voila, Braxton is a freak of nature. At least that’s what so many make it seem like when we take Braxton out. The stares, the judgmental eyes, the gaping jaws, the whispering conversation that ceases the second inadvertent eye contact is made; they are all silently questioning “What’s wrong with that kid?” For the brave few who actually ask, my skin just crawls and I literally want to punch them in the face or at the very least give them the verbal lashing they deserve for asking such a loaded question. Sure, it seems innocent enough, but do you know what the question entails? “What’s WRONG with him?” There it is, that glaring, nasty word…WRONG. It has such a negative connotation and carries with it so much judgment.

Dictionary.com defines “Wrong:”

Wrong: adjective 1. not in accordance with what is morally right or good 2. deviating from truth or fact; erroneous 3. not correct in action, judgment, opinion, method, etc., as a person; 4. not proper or usual; not in accordance with requirements or recommended practice 5. out of order; awry; amiss — noun 8. that which is wrong, or not in accordance with morality, goodness, or truth; evil

Synonyms include: bad, evil, wicked, sinful, immoral, iniquitous, reprehensible, crooked, inaccurate, incorrect, false, untrue, mistaken. improper, unsuitable. misdoing, wickedness, sin, vice, maltreat, abuse, oppress, cheat, defraud, dishonor.

While some may have good intentions, there is nothing thoughtful about any part of that definition. Particularly, the parts about not being in accordance with what is morally right or good. So, to ask “What’s WRONG?” [whether aloud or with questioning eyes] implies that there is something NOT right about my son, something that defies morality and a particular way of life. Implies that there IS in fact a “right” way to be and my son isn’t it. WRONG: it’s such a harsh and judgmental word that has no business being used in the same sentence with my son, or with anyone who is “different” for that matter. Special needs children are NOT freaks of nature. There is no need to stare, point, snicker, whisper, or degrade them simply because they are not what you would consider “normal.” What’s “normal” anyway? It’s a preconceived notion that may differ for everyone based on life experience. Your “normal” is not at all my “normal” and NEITHER of them is more right than the other. We should all learn to be tolerant of one another. Just because you don’t understand another’s way of life or disability doesn’t mean you should belittle them or treat them with complete disrespect, they are PEOPLE. People with the exact same feelings and emotions that you have, and you probably wouldn’t like it very much if someone went around looking at you crazy or questioning whether or not your existence was in accordance with morality.

*steps off soapbox* Carry on.

Does it look like there is anything “Wrong” with him? Didn’t think so.

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Beyond Frustrating!

I swear, when it rains, it pours for Brax. 😦

We have his first Post-Op follow-up for his hand surgery tomorrow and they will change his bandages for him.  Follow-up again next week to change bandages, and then once more the following week to finally take the bandages off.

Monday, we went to see GI about Brax’s recent increased feeding difficulties and got nothing but bad news it seems.  With all the coughing and vomiting GI is now concerned that Braxton has reflux.  We started Brax on an acid blocker a couple days before surgery last week to see if that would help stop the vomiting and help heal the esophagus which has likely had some erosion from vomiting.  The dr said that sometimes after an illness like Pneumonia, we can develop gastroparesis where the stomach has problems emptying properly due to the illness.  Monday we followed-up on that and not sure if the medicine helped, or decreasing the speed of his feeds had more to do with it.  The doctor decided to go ahead and switch Brax over to Pediasure Peptide which is a formula that digests a little easier so that his stomach empties faster to address the possibility of gastroparesis.  He also decided Brax needs to have a Gastric Emptying Scan which is a study that will basically x-ray Brax’s stomach while he digests his formula over the course of about 2 hours.  This will help to tell us if Brax is definitely having issues digesting food properly. The cure? Surgery. Ugh. The doctor also had us revert back to using the feeding pump for Brax’s G-Tube instead of feeding by mouth.  He wants us to still offer his bottle and food just so he knows he needs to keep doing it and doesn’t develop a complete aversion to eating/drinking by mouth.  He was doing so well before he got sick, now we have all this. It sucks.  I was able to go ahead and the Gastric Emptying Scan scheduled at the end of next week. Our Medical Supply company got us a new shipment of the new formula. And we are continuing the acid blocker and the slower feeds using the feeding pump.

Great! Right? No. Today Brax threw up two of his feeds at daycare.  I was going to try and keep him home while he was recovering from surgery, but those plans fell through and I had to take him to daycare.  Extreme mommy guilt set in. Then, the physical therapist called me to tell me he threw up a majority of his feeding and she was concerned.  Since this has been an issue I decided to let him stay and just slow the feeding pump down even more for the next feed.  Welp, right on schedule 4 hours later daycare was calling that he’d just thrown up the entire feed again. Worst mommy of the year goes to?? This is one of those days I wish I didn’t have to work out of the home. Medicine, new formula, slower feeds and he is STILL throwing up! What gives?!? Left a message for GI Dr, but of course no word just yet.  I’ll be calling all morning until I get a hold of someone.  Now that we are home, Brax has just been somewhat fussy and grumpy. His afternoon feed is finishing up and he fell asleep so we’ll see if he can keep this one down, plus this evening as well.  Also scheduled an appointment with the pediatrician in the morning because his cough is not getting better and I pulled a bunch of green stuff out of his tummy. Sinus Infection maybe? Ohhh I dunno, at this point I’m just overwhelmed and frustrated.

Tuesday, we also saw the ophthalmologist because I’ve noticed Braxton’s eyes crossing intermittently throughout the day and I wasn’t sure if it was anything she needed to look at.  Of course, we get to the office and his eyes don’t cross once! Thankfully, I did happen to have a picture on my phone and she said he was definitely crossing. There are 2 different kinds of crossing. There is one where glasses would be needed to correct it, and another where it just happens occasionally but kids usually grow out of.  To test we have to do a refraction test, so dr gave us some eye drops that we are to use a couple days prior to seeing her and the drops actually bring out the crossing if it’s the one that needs glasses to correct.  Lovely, my child may have glasses annnnddd hearing aids =/ I’ll love him no matter what and he’ll always be the cutest kid I know 😉 But, people suck and are just not raised right anymore and just stare at him, but that’s another post entirely…we’ll go back in a few weeks once his hand situation is taken care of to see what’s going on with his eyes.

I think that’s everything. Confused? So are we. =/

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We Survived the Weekend

Man oh man, we have a long, hard road ahead! If you can believe it, this has been the roughest weekend we’ve had with Brax since we brought him home from NICU.  He’s never been one to fuss too much, but he was not a happy camper this weekend.  Poor baby was doing so well trying to crawl and now he’s not allowed to bear weight on his hands at all!! It’s been pretty tough trying to keep him off of his hands. Every time we lay him down he flips almost right away, he’s up on his hands and smiling as big as ever! So, obviously it doesn’t hurt it too much, but the doctor said too much weight bearing and it could damage the surgery site and skin graft site, sooo better safe than sorry and we’ll be keeping him off his hands.

We’ve been trying all weekend to find things he can do without his hands.  We’ve sat him up quite a bit and read him some stories, he’s got a penguin punching bag type toy and he seems to enjoy that, and we’ve also let him do LOTS of jumping in his bouncer.  He LOVES that thing! He’d bounce in it all day if we let him (but he falls asleep in it, so we take him out).  He’s also been sleeping much more than usual. Probably because he’s so bored from being kept off his hands.  But he seems a little restless too.

It’s tough getting him to sleep at night, it’s like he just can’t get comfortable and just kicks and kicks until he falls asleep.  The hospital sent us home with a pain med prescription, but I hate giving him such strong medicine if he doesn’t need it, buuutt he doesn’t complain enough for me to know when he needs it! Gahhhh, talk about frustrating.  I mean, I know if *I* had surgery I’d probably need it so it seems mean to keep him from it, especially since he’s not old enough to tell me what’s wrong.  Guess that’s really been the struggle this weekend.  Knowing when to give him the pain med versus just regular Tylenol or Ibuprofen. And of course keeping him off his hands, which he is just dying to do.  Seriously can’t even leave the room if he’s awake because by the time we come back there he is on his tummy up on his hands. Silly boy.

I think, overall, it’s been a pretty good weekend.  Taxing on us mentally and emotionally, but we’ve had some good times too.  Brax still seems to be in such good spirits and manages to laugh and play with us an awful lot.  Just hurts to see him trying so hard to want to crawl, to grab his pacifier, to reach out for toys and just not be able to with the bandages on.  12 more days of this. Yikes!

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Dad’s thoughts on Braxton

Hi all, Joseph here.  Vanessa has been telling me that I needed to blog something about Braxton so the world can have an idea my stand point on the matter.  First of all, I am thankful to have Vanessa as a mother.  She took such good care of herself during the pregnancy so I know that she did everything she could.  I mean the baby came out weighing over 8 pounds!  I will not lie, having a special needs child is rough and most people at my work do not understand, that on my week off, IT’S MY WEEK OFF!  They still call every week just about to ask if I can come in on rig move since it’s the new “rule.”  Granted, I want to move up to become a rig manager so I can provide for my family even more, but to be bounced around with the hope of becoming one is beginning to take a toll on the relationship with my family.  It’s been over 3 months that I have had my replacement in training, but still no word from my higher ups about the promotion.  They don’t see that every week Braxton has 2 home appointments of physical therapy, speech therapy, OT, vision therapy, and after all that we have our weekly check ups with our GI, Pediatrician, Endocrinologist, Cardiologist, and many more.  So roughly every day of every week we have 2-3 appointments so rescheduling all those because of a rig move can become quite the hassle.

On the other hand, I am also starting to get recognition as a DJ/event holder in the Austin area.  I could do shows every week if I had the time, but I see the toll it takes on Vanessa and our family so I try and space them out to be considerate of her feelings.  I love music.  I have been dreaming of doing shows since I was a little kid so I try and even mix all genres to make everyone happy.  Music is a way for me to release myself.  Whether it’s making a new song, doing a gig, recording a new beat, or just helping set up a show makes me feel accomplished, and I feel that everyone should do something like that in their life because it helps you find a brighter outlook on life.  Not saying that I am depressed or life sucks, just saying that if you have a passion for something in life, that you should do it no matter what.  I’m not saying to just drop everything and do it, the only time you should do that is if you are fishing and Jesus says to drop your nets and follow me.  LOL.  That is a true story by the way.

Anyways, what I am saying is that a real man provides for his family, loves his family, which in return reflects that he in fact loves himself too.  If I was to grind all night and day and hate my life then what message would I show to my children besides the fact that “Dad hates his job, hates working, and is always mad?”  I feel (and this is just my opinion) that you should chase your dreams.  It is better to fall short trying than to sit at home 25 years later and think “what if?”   That is why I am glad that we have so many doctors who are in our corner trying to help us get the best help that we need so Braxton can grow up and chase his dreams.  I also am glad that Vanessa has a job where she can rearrange her schedule to compensate for Braxton’s needs.  I wish I could do the same, but the fact is that when on a rig, you are there for the entire hitch.  I am thankful that Vanessa can handle so much because I do not know what I would do without my “ride or die” girl (haha).  She gets onto me a lot about things but I guess in every relationship, it is healthy to fight.  We both hold firm to our opinions and will fight to the death for them (so to speak).  I couldn’t imagine myself with anyone else besides her.   I love my son no doubt, I guess I have so much ambition inside of me to do new things, try new things, and acquire new things that I overlook some obstacles I am causing.  I am a proud father, whether Braxton gets a 400 on his SATs or a 1400 I will still love him to the fullest.  Honestly, I see how other kids his age are grabbing everything, acting crazy, screaming, whining when the parent leaves the room, and I am thankful that Braxton is so well behaved.

Braxton can hear without his hearing aids, he is not deaf, but at least the boy is so chill.  I know he does NOT get that from me HAHA.  I knew he could hear something before we got the hearing aids because when he would be cranky I would put some of my instrumentals on and he would just sit there completely quiet and listen.  He really likes my MPC (beat pad) because he kinda jumps and laughs/smiles every time he pushes the button and it makes a different sound.   With his hearing aids in now, I haven’t had the chance to try and play some more with him with it, but I’m sure he will enjoy it. I hope that if there is any family struggling with the same type of child that they find hope.  We are proud to have Braxton as our son, he is not behind, he is just simply taking his time and enjoying the scenery as he goes 🙂 Ok so that is a enough of random rambling from me .  I do appreciate everyone’s support and love.

 

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