Monthly Archives: January 2013

Good Thing I Had My Orange Juice

You’ve seen the Florida Orange Juice commercials right? The ones where the people are sitting at a table and a whole group is telling them all the things that are going to go wrong that day..and at the end they say “Well…good thing I had my orange juice” Ha, well I totally felt like I was in one today…and if you haven’t seen one, here ya go:

[Disclaimer: I am not being paid for this, it simply related to how I felt today. I actually prefer Simply Orange orange juice instead. No, I wasn’t paid for that either.]

Today, Braxton had two doctors appointments.  Normally, I schedule appointments around Joseph’s schedule so I will have help getting him to and from appointments.  I work about 5 miles from most of his appointments, so it really helps when Joseph is home for him to bring Brax and for me to just meet them there.  Well, unfortunately, this week, Joseph was called in to work early leaving me to fend for myself with today’s appointments.  Normally, I leave about 15 minutes til the appointment time and arrive just on time. When I’m on my own, I have to leave an hour earlier than I planned so that I can drive all the way south to pick Braxton up from daycare and then all the way north for appointments.  Sadly, none of the specialists we see are near our house so it’s a good 30-40 miles from home for every one of them.  Blah! Needless to say, my breakfast table had Joseph telling me he had to go to work early. Excellent. Work telling me I’d be incredibly busy for the morning. Lovely. Braxton telling me I’d have to drive all the way to his daycare to pick him up. Sweet. The dentist telling me to arrive 15 minutes early for paperwork. Fantastic. The ophthalmologist telling me I’d have to wait an hour and a half to see her for 5 minutes.  Stupendous! And the weatherman saying it was going to rain all afternoon. Oh, joy! And finally, Aileen telling me she was going to have a bad day and throw a fit when I got home.  Swell. Unfortunately, I did not have a glass of magical orange juice.

The Dentist appointment went really well! There is a special needs clinic near the other specialists that Brax sees, but the waiting list was too long, so I found another dentist who has experience with SN children.  She was super nice! The whole staff was! From making the appointment, to filling out paperwork, and even the exam everyone was very nice and patient and helpful about the whole process.  Since he is still a baby his first cleaning was a lap exam, where he sat facing me and then he was laid back so the dentist could check him.  Usually, you have to sit awkwardly on that uncomfortable exam table, well this clinic had a large comfy chair I got to sit in! Pretty nice!

Quite the cozy exam room!

Quite the cozy exam room!

The comfy chair I got to sit in while they examined Brax

The comfy chair I got to sit in while they examined Brax

The dentist checked his mouth and we knew Brax had his 2 front top and bottom teeth, but turns out he has SIX more teeth coming in!! They are all in a crazy order, but the dentist reassured me it’s perfectly normal (regardless of him being SN) His top molars are coming in on both sides and his top & bottom canines are also coming in! Holy cow! I had no idea!! Guess we’ll be investing in a toothbrush sooner than expected. I also talked to her about taking his pacifier away and she said from a professional standpoint, she didn’t see any reason for me to take it away.  She mentioned speaking to a child psychiatrist who told her that taking away the pacifier could actually be detrimental because it’s something that is familiar and is comforting for him, so if we take it away it could set him back.  He hardly uses it anyway, so I’m not too concerned about that.  Brax also has one of his front teeth coming in a little crooked and covering the frenum on the inside of the upper lip.  The frenum is that small piece of tissue that you see under your upper lip connected to your gums.  Anywho, Braxton’s tooth covers that and I thought it might have to be cut or something, but the dentist said that wasn’t necessary.  She mentioned that it didn’t appear to be losing blood supply or anything and that in the future we could put an extension device in to help straighten the front tooth out. Overall, the visit went very well and multiple times the dentist told me she sees a lot of the same things in “typical” children who have no underlying genetic issues…that kind of made me feel a little better about everything. At least not everything about him is out of the norm.

Brax's tooth covers the frenum

Brax’s tooth covers the frenum

Our second appointment of the day was with the ophthalmologist.  I have a love/hate relationship with her.  I think she is very knowledgeable and thorough, but her office is terrible! I wait over an hour EVERY. SINGLE. TIME! We went straight after the dentist, so we arrived a little early (about 2:45 for a 3:00 appt) and there was no seat, so I had to sit with Brax on one of the little kiddie super uncomfortable wooden chairs -__- until we were called back at 3:55. Doc came in right away and visited with us for maybe 5 (ok ok I’ll give her the benefit of the doubt – 10) minutes.  This was a follow-up regarding Braxton’s abnormal tear ducts.  The lower ones are very small and the upper ducts are missing.  We tried probing and irrigation in April of 2012, but even the smallest probe had trouble fitting in to Braxton’s tear ducts. We’ve been playing the “wait-it-out” game ever since. The doc said that over time his ducts would grow and eventually they could try the probing again.  Well, today she looked in office and said that she could somewhat see the tear ducts, but that they still looked a little small to try and probe again.  She recommended we again wait until just before his 2nd birthday to see if they get any bigger.  If they do, Braxton will be put under anesthesia again and she will attempt the probing & irrigation again and possibly insert silicone tubes into his tear ducts.  The tubes will help to open up the tear ducts and allow the tears to clear naturally and eventually the tubes would come out, but leave the new tissue that has grown in tact so he would have working tear ducts.  She said we’ll be coordinating this procedure with the occular plastic team, because if, for some reason that STILL doesn’t work, we will have to go ahead and do a reconstructive surgery. 😦 He would have to have Lacrimal Bypass Surgery with Jones Tubes, which means they will break a small connector bone at the top of the nose and essentially create NEW tear ducts, therefore bypassing his original ones completely.  After 3-4 months the tubes would come out leaving the system in tact for his body to use instead of the original ones.  Blah, poor kiddo. (Images below from here.)

Illustration of Normal Vs. Blocked tear duct

Illustration of Normal Vs. Blocked tear duct

Before the surgery

Before the surgery

After the surgery

After the surgery

All in all, it was an ok day, albeit an extremely busy one! Good thing is, that it didn’t rain! Woo, take that weatherman! Haha…small victories.  It’s also a good thing that aside from daily therapies, we don’t have any appointments until the end of February! Could that be right?! o_O

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30 Days to Make a Habit

They say that for something to become a habit, you must do it for 30 days.  Well, we are well over 30 days of trying out the Blenderized Diet and it is very much a habit now! This is by far the best decision I’ve ever made for my child.  He is tolerating the volume and the feeds extremely well. Braxton is doing so well with the new diet.   My only regret is that I didn’t start this sooner!  I was extremely overwhelmed when this all started, but once you get a handle on everything and find something that works, it’s really very easy.

I’ve found a couple recipes that really seem to work well for Braxton, and they are easy for me to keep up with.  I’ve started to make my own fruit, veggie, and meat blends too.  Jarred baby food gets a little expensive, so buying whole fruits and meats makes a lot more than what is available jarred.  Little by little I cook the meat or steam the veggies and then blend them up and freeze them.  I’ve used ice cube trays to save one ounce portions that I can easily thaw and add to the blender and even saved baby food jars to put my blends in.  I prepare Braxton’s blend nightly for the next day.  The blend is usually enough for about a day and a half, so every couple days I do get a break 🙂

Instead of posting each recipe and picture of nutrition facts, I’ve created a Google Doc that I can share with you all instead! If you are looking for recipes or need any nutrition information you can visit my spreadsheet here.

Braxton is even eating now!! Yayyyy!! I accidentally left his feeding success off our last post..yikes! It’s still a very slow process, but we are getting somewhere with him now.  Braxton is consistently taking about an ounce of food whenever I offer it to him.  We’ve tried pureed baby foods again, but I’ve also started trying other things like yogurt and pudding to see if he has a preference for different textures or flavors.  He wasn’t a fan of chocolate pudding *gasp!* I told him there was no way he was my kid if he didn’t like chocolate pudding haha He really seems to like Baby Yo’s Peach Yogurt though and he has been actively eating that when offered.  I’m so happy to see him making some progress with eating.  Hopefully we can get him back to where he was at with eating and move toward having his G-Tube taken out.  One day.  For now, we will keep working with him and celebrating all the little successes, because one day we’ll look back and truly realize how instrumental those were for him.

It’s exciting to finally post so much good news!! Brax has been a little under the weather this week, but overall he’s doing so well! We even have a slow couple of months coming up.  Aside from daily therapies, we don’t have very many doctors appointments coming up. Woooo! A break! Haha I was preparing our calendar for the next couple of months and was very surprised to see that we only have 1 appointment this month AND next month! Sadly, I sat and stared at the calendar for a good while thinking that I had missed something! Hopefully, I haven’t.  Until next time…..here’s Braxton 🙂

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Who Flipped the Switch?!

He loves playing with his sister now

He loves playing with his sister now

In just a couple of days, (Jan. 24th) we will officially have a 19 month old on our hands! Braxton continues to make significant progress in all areas, and we could not be more thrilled.  Braxton is truly starting to come into his own person.  This little boy has developed an entirely new personality, perhaps not completely new, but we are starting to see new traits.  He is quite the little jokester.  He is really starting to do stuff like drop things on purpose to see if we will pick it up, all the while looking and grinning at us like he knows exactly what he’s doing.  He’s also developed purposeful play.  He will crawl over to a toy with intent and actually sit and play with it for long periods of time before moving on to the next toy.  You can tell that he is very focused and concentrating on the fine/gross motor skills required for the task at hand.

At the end of November, we sent his hearing aids off to be repaired and we JUST got them back about 2 weeks ago and he is adjusting to them again, but we’re definitely seeing improvement.  He is making new sounds throughout the day (naturally, he says and does nothing when the Speech Therapist is here – jokester, I tell ya) and laughing so much.  It is such a joy to sit back and watch him play and crawl around like I never thought possible.  Every single day I see him do something new and I just want to cry because I’m so happy to see him developing despite the initial prognosis.  He’s even enjoying playing with his sister more.  Aileen really loves that she can play with him and get feedback from him.  He laughs and squeals and is just overjoyed by the interaction. It just melts my heart.

Developmentally, I’d say Braxton is more on track with a “typical” 9-10 month old who is actively crawling and playing and making attempts at standing/walking.  He still has no real speech.  He makes sounds and babbles a little bit, but no words yet.  I get to sit and make silly sounds back and forth with him and am just thrilled to see him carry on the turn taking as he should.  Not quite imitating yet, but natural turn taking seems to be kicking in.  We are trying to focus on more sign language and even though he hasn’t quite developed the coordination, I’m hoping that seeing the signs over and over will help him to eventually pick it up.

We’ve even seen more cognitive problem solving skills develop.  He is actually thinking about things and how to do things differently.  For example, I’ve had to section off the living room to keep him from going to the kitchen and staring out the patio window.  I set his playpen between the couch and the wall so he can’t pass through. Well, Braxton will often kneel and try to push the playpen out of the way so he can get through! If I leave even a small crack and he thinks he can get through he will squeeze himself in and push and push until he gets stuck or edges the playpen out of the way so he can get through. Absolutely amazing.

Focused on his Xylophone

Focused on his Xylophone

There are significant advancements being made here and I’m so grateful to see Braxton reaching milestones left and right. It’s literally like a light switch flipped on in his mind.  He may still be quite a bit behind, but you can’t rush perfection 😉 He will do it in his own time, in his own way.  Keep up the great work, little man! Mommy and Daddy could not be more proud.

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The Face of Welfare

Picture

And what if the family you saw was mine?

Here lately, I’ve seen a lot of e-cards and posts flying around about how welfare recipients are basically the scum of the Earth and just looking for a handout.  What if I told you that wasn’t true? I’m not trying to be political here, just trying to offer a different view; a reality that I know all too well.  In fact, I don’t feel like I side with one party over another…I listen to the issues, do my own research, and find the candidate who most closely aligns with that be they red, blue, purple, green, whatever.  I don’t blindly follow a party based on ideals that aren’t fully in practice anymore.  That being said, I have a serious issue with the flagrant ignorance running rampant throughout our society.  By no means am I an expert, and I’m not claiming to be, I simply want to offer our story for you to think about the next time someone tells you that everyone on welfare is worthless.

When I was growing up, I didn’t have many luxuries.  Almost everything we had was second hand, off brand, and never enough. BOTH of my parents worked hard trying to support us.  I don’t think there was ever a time that my parents didn’t work to try and provide for our family.  My dad was a truck driver and also played in a band, and my mom has had so many jobs trying to help make ends meet while my dad chased his dreams.  Despite the struggles, we never went without our basic necessities because our parents worked hard to provide at least that for myself and my 5 siblings.  We had food stamps and medicaid for as long as I could remember.  We often had “Blue Santa” or the Salvation Army bring us Christmas gifts because my parents simply could not afford everything we wanted.  Even then, welfare acceptance was stigmatized and I was embarrassed to have it, but I’m thankful that we did.  My parents worked as hard as they could and it wasn’t enough.  I’m thankful everyday to them for doing all they could for us.  That’s the story for most people who are on welfare.  This sensationalized idea that EVERYONE on welfare has gold teeth, tattoos, an iPhone, and brand name purse sitting at home collecting your hard earned taxes is completely ridiculous! Yes, there are some people out there who abuse the system, but it’s not as many as you think.  Several families are struggling to make ends meet and need that extra assistance to better themselves.  Not everyone wants a handout for the rest of their life.

Fast forward just a few years ago, I was a single mom raising my child and trying to finish college so I could get a better job and afford things for my daughter that I didn’t have when I was a kid.  I had to suck up my pride and walk in to that medicaid office. She was on medicaid and we received food stamps because there just wasn’t enough money to eat sometimes.  I can’t tell you how many times I went without food so my child could eat.  I had 2-3 jobs trying to finish school and trying to afford childcare because I didn’t want to simply sit at home collecting a check.  I worked my butt off and paid taxes just like everyone else, why should I feel ashamed to ask for some of that money back in the form of welfare assistance? Yes, perhaps I should have thought about that before I had a child, maybe I was irresponsible, I should have had a savings in place, but whatever, you can’t send a kid back once they’re here, you have to step up and be a parent.  You do whatever it takes to provide, and that’s what I did.  I’ve never touched a drug in my life. I don’t smoke.  I rarely drink.  I don’t spend my money on all the things people claim.  Every cent I had went to rent, bills, and my kid.  I probably, no definitely, had the same clothes for several years before I bought myself anything.  My child was always clothed before me.  I tried. I’m still trying.

Now, here we are in 2013, and I’m surely better off than I ever have been, but still receive some form of assistance.  I have a good job and so does Joseph. In a perfect world, we wouldn’t need assistance, but in 2011 our lives were forever changed.  We didn’t ask to have a medically complex child, hell, we didn’t even have the slightest clue that we would, but here he is. He didn’t ask to be born into these circumstances, but for whatever reason, he was.  As his parents, we will do everything in our power to care for him and get him the treatment that he needs.   We work, we’re drug tested, we’re paying taxes, and we’re getting medicaid for our kids. I have an iPhone (guess what? it was free), occasionally I get my hair and nails done ($60 every 2-3 months is hardly anything to for you to huff at), occasionally we have a night out (usually it’s for a show that Joseph is doing that he is being PAID for so we can have extra money and for the really rare occasion that we go out for fun, why aren’t we allowed that privilege? Spend one day in my life and tell me a night out every 3 months isn’t justified).  If these things annoy you because we are receiving medicaid YOUR taxes paid for, guess what? Our taxes did too.

Joseph has insurance for Braxton through his work and had a savings before Braxton was born.  Braxton had a 3 week NICU stay. Do you know how expensive that is? Last year, in 2012, we had over $200,000 in medical bills.  I don’t care how good your job is, co-pays and deductibles for $200,000 worth of bills adds up, and it adds up quick! The savings that was in place was used much faster than we thought. So much for staying ahead and being prepared. And now? Pffft, there is no savings.  The money is used before it is even received.  Braxton’s formula was $8 per bottle.  He was using 4 bottles per day.  $32/day x 30 days in a month…that’s almost $1,000 a month just so our kid could eat.  Guess what? Private insurance does NOT cover that cost.  Sure, get health insurance, have a good job and you won’t have so many problems is easy to say, but in practice, that’s just not how it works.  If we didn’t have medicaid, I don’t know how I’d feed my kid.   We have 13 different specialists and 6 different therapists that Braxton sees regularly.  Private health insurance doesn’t fully cover the cost for all of those visits.  Medicaid has to pick up that balance.  Braxton requires several medical supplies on a monthly basis that we simply couldn’t afford without medicaid.  We aren’t the only ones with this story.  I know several families who have children who vary in disability and some are far worse than Braxton.  In some, one parent is FORCED to quit working simply because they HAVE to care for their child.  Try living in a one income household in today’s world…it doesn’t work.  Unless you are born from money, an athlete, or Hollywood star, there is no way you could afford it.  There are countless people on assistance because they NEED it, but they are stigmatized because you all refuse to see that reality.  All you see is the few who abuse the system and then make gross generalizations and spread them as truth, when they couldn’t be further from it.  Why should we be stigmatized? Why should I be ashamed to admit that I have medicaid? I’m not proud of it, but I sure am thankful.  I work just as hard as everyone complaining about paying taxes and I even pay taxes so why not take advantage of the service I’m paying for anyway.  Joseph paid over $24,000 in taxes last year.  That’s more than some people make.  Don’t tell me we should be shamed for having medicaid…us and so many others are NOT sitting at home collecting a check, selling/doing drugs, living a ghetto fabulous life…we are merely trying to help our family survive and we are contributing citizens who deserve access to the assistance that probably prevents us from living on the street.

This crass stereotype has to stop somewhere, hopefully with you.  I’m sure there are some dishonest people that are ruining it for everyone else, but think about our family the next time you trash talk EVERYONE who receives assistance.   It hurts to see so many of my own friends perpetuating this hatred and public shaming. Adamantly insinuating that anyone on welfare is the scum of the Earth.  I’m sure we’ll receive some “OH, I wasn’t talking about you” “But you guys are different” responses, but know that you are talking about us and we aren’t different than many of the people you trash, and try not to be so cynical, and understand that public assistance is going to people who truly deserve it. And just because people might have *some* nice things and still receive assistance, understand that they may have earned those things before their circumstances were different.  An iPhone is no longer a status symbol for being wealthy….they’re free now.  Having your hair and nails done is not irresponsible…maybe I want to appear that I’m not falling apart on the inside and looking nice makes me feel better about myself, is there really some unwritten rule that you HAVE to look like trash if you’re receiving assistance?   Name brand clothes even aren’t good indicators of abusing the system…Ross sells Polo for $20, may be last season, but all you see is the brand and automatically assume the worst.  Check your own perspective and think about what you are spreading before you click that ‘Like’ button or share that “hilarious” e-card demanding a photo of the “ghetto family” you are supporting with your taxes…probably not so funny if you opened that envelope and saw our picture on the inside, huh?

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Remember the Moments

“We do not remember the days, we remember the moments” – Cesare Pavese

Today was a pretty amazing day.  Definitely didn’t start out that way, but something amazing happened that I will always remember.

Today, we had a follow up with our GI doctor; our first since having switched over to the blenderized diet.  Started out just as any other appointment, waiting room, exam room, routine height and weight, nothing special.  Braxton is now 26.3 pounds and 32 inches long! He has gained a little over a pound since we started the new diet 6 weeks ago.  He is continuing along his growth patterns just fine.  When our doctor came in, he went through his normal routine of questions to see what has changed.  For the first time, in a long time, I was able to tell him that everything had been great! Braxton has vomited maybe 4 times in 6 weeks (and each time was due to feeding him too quickly and not anything to do with intolerance of the homemade blend). This is a HUGE turnaround from having dealt with vomiting several times EVERY DAY! He took Braxton off his medications since his vomiting was under control and considering he hadn’t been on them in over a week anyway.  We were waiting on refills, so he was without them, but turns out he doesn’t even need them now. Yay!

FINALLY! Finally, we have found something that works! But, that’s not even the best part.  Our Dr continued to examine Braxton, and then he sat Braxton right in front of him to examine him and Brax reached out to touch the doctors face.  His pacifier fell and Braxton leaned over the edge of the exam table to see where it had fallen.  When he realized it wasn’t there (mom picked it up) he focused back on the doctor.  He held steady eye contact and continued to reach out for the doctors face.  Braxton has a fascination with glasses, so we knew he was trying to get them off the doc’s face.  As the doctor moved back and forth Braxton continued to follow him and reach with both hands for his face.  The doctor then grabbed Brax under his arms to move him back and Braxton instead stood himself up to start bouncing, and all the while he was smiling….he was playing with the doctor.

And then it happened…. our doctor made a comment about how interactive Braxton was with him this visit and that he had never been like that before.  He said he was so happy to see such progress from Braxton considering where he was when he first saw him.  He said he was so happy that he wanted to CRY.  As I sat and watched him continue to play with Braxton I noticed the tears well up in his eyes and heard his voice waver as he tried to hold them back.  He had genuine emotion and was truly happy to see just how far Braxton has come.  It was an amazing moment.  Amazing to see that this man was more invested in my child’s success than I thought.  And it wasn’t simply the eating part of it.  He was thrilled to see Braxton growing and thriving and reaching milestones they never thought possible.  It warms my heart to know we have such a great doctor who truly cares for his patients. I wish I had gotten a picture, but I was just as caught up in the moment….and yes, I had to fight back tears too.  This is one of those moments we’ll always remember.  We may not remember today, but we will always remember the moment one of Braxton’s doctors was literally moved to tears over the outstanding progress little man has made.  This kid is destined for greatness.

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