Monthly Archives: March 2013

Happy Easter, from all of us!

Since sister’s blog got the Easter preparation blog, Braxton can have the Easter day blog and it will be cross-posted over there 🙂 Be sure to check out the preparation blog to see our fun times filling eggs with candy and dying eggs with Kool-Aid! Sis did a fantastic job!!

As Braxton gets older, Holidays will become tougher, so I’m enjoying everything that I can right now.  By tougher, I mean that for now he doesn’t care that he can’t eat all the sweets that come with Holiday gatherings, but later on I know he’ll start to feel left out and wonder why he can’t participate.  What’s worse, is knowing that I may face some resistance from schools, family, and others about possibly including some non-food treats for things like Halloween, Valentines, and even Easter.  I’m part of a few different groups where several moms have encountered this resistance, and it breaks my heart and I don’t look forward to the day I have to deal with that.  But, with everything, I take this day-by-day.  I don’t know what the future holds, maybe Braxton will be eating by then and we’ll have nothing to worry about! (Wishful thinking, but nothing wrong with having HOPE!)

Regardless, we had the most fantastic day! We woke up early and went to Church, after all, JESUS is the reason for today! Amazing sermon today and Braxton even stayed awake the entire time! He got a little restless and started showing off by standing and cruising along the seats next to us and even bouncing a little bit when he heard the music.  Little man amazes me everyday.  The Easter Bunny did make an appearance after Church and we got a picture although Brax was not amused.

After Church we came home to get ready to head out to visit my sister’s boyfriend’s family’s ranch. (Sufficiently confusing?) Our family doesn’t have many little kids running around anymore, so it was nice to get together with a big family and let the kids hunt for Easter eggs. Aileen had a blast with all that wide open space.  She must have lived on a ranch in a past life…she LOVVESSS the animals! She also made some new friends and everyone got along…annnnd she made out like a bandit in the egg hunt.  Braxton enjoyed exploring the new environment, but quickly went with what he knew best.  He crawled right over to a window to look outside and chew on the window sill.  We took him outside during the egg hunt and let him crawl around on the grass.  We even set some eggs up around him and let him play with him. He was so content.  It was truly a great day and although I am exhausted from this weekend, the smiles on my kid’s faces makes it all worthwhile.

 

Lots of pictures…of course 😉

And just when I thought it was over, I stepped outside to take the trash out and there was one final surprise. The “real” Easter Bunny paid us a visit!! Found this little guy in our yard…I suppose he just wanted to wish us all a Happy Easter!

Happy Easter, from all of us!

Happy Easter, from all of us!

 

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Preparing for Easter

Cross-Post from sister’s website about our fun preparing for Easter!! It’s been a great weekend! 😉

According to Aileen

We have had so much fun preparing for some Easter fun! Friday I was off of work and Aileen had no school, so we spent all day filling up plastic eggs with candy and then dying hardboiled eggs with Kool-Aid!! A friend suggested a different all natural DIY dye, but I forgot the list of ingredients and couldn’t get my stupid internet to work at the store, so Kool-aid it was.

Aileen had been watching the calendar like a hawk. So much so that she thought Easter was last weekend because the Sunday was split in half and she didn’t understand that it represented the next week.  So all last week she was going around upset and yelling at me that she was going to miss Easter because I didn’t want to let her paint eggs. Sheeesssh!!! Drew out a different calendar for her and finally made her understand she…

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The Gift of Speech

I’ve often heard, “You spend your child’s first year teaching them to walk and talk, and the rest of their lives telling them to shut up and sit down.” – and yes, I thought to myself that is SO true! Until…I had a child who at almost 2 years old still cannot walk or talk.  Having a child with special needs causes you to completely re-evaluate everything and learn to appreciate all that is so magical about life.  Your child won’t stop gabbing about their favorite toy? Keeps demanding their favorite movie? Won’t stop climbing the furniture? Keeps you in shape by making you chase after him? I ENVY YOU! I WISH my child would say ANYTHING at all that is coherent.  I WISH my child could run and explore his little world.  I try not to dwell, but I do have days where I hold Braxton while he is sleeping and just cry thinking about all the things he should be doing but isn’t.  Or cry thinking of how far he has come.  Of all the things I wish he could do, I wish he could speak.  This poem beautifully captures that sentiment:

Sometimes when he's sleeping....

Sometimes when he’s sleeping….

 

Wishes in the Dark (for Abby) ~ copyright 1999 by Lisa Esmond
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sometimes when she’s sleeping
I can see in my mind’s eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she’s sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she’s sleeping
she seems so whole and well
I can’t believe she won’t awaken
with dreams of which to tell.

Sometimes when she’s sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she’s sleeping
and my eyes ache with tears unshed,
I pray she’ll always be full of peace
as she slumbers in her bed.

Sometimes when she’s sleeping
I can almost hear her say
“I love you, Mom, with my heart
and my soul, each and every day”.

But always when she’s sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

What I would give to have Braxton look up at me and call me “Mama” or walk up to me just to say “I love you.” I don’t know if that will ever happen.  I believe in my heart and hope with every fiber of my being that he will, but at this point I just don’t know.  He is babbling and making lots of sounds, but despite all my efforts, none of those wonderful sounds will form in to the magical words I’m longing to hear.  I know he loves me, without a doubt.  But there is really something special about hearing those three little words.  What happens when your child doesn’t have the words to say what you want to hear? You have to learn to read their signals instead.  The eyes can truly say so much.  There are times I play with Braxton, or catch his attention and he makes eye contact with me and his little eyes light up and a smile flashes across his face and my heart melts.  There it is.  That’s my “I love you” and it is ever so special to me even though he can’t yet say the words. I can feel it.  I feel it deep within my heart.  One day, he WILL say those special words, and that day I may not be able to hold back the tears or ever forget that moment.  That is one moment I will hold on to for all eternity.

Until that moment comes, we cherish every day and learn to communicate by taking our cues from Braxton.  We are open to the possibility of Braxton needing an assistive technology device to speak to us.  We are also taking sign language classes so we’ll have a definite method of communication should Braxton not learn to speak, or should his communication device not work if we take that route.  Communication is fundamental and it’s important to us to be able to communicate with Braxton by any means necessary so I’m very excited to be taking sign language classes and hope with all my heart Braxton learns to speak or sign very soon.

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My Sister is Awesome!

A few weeks ago, I started a second blog for Braxton’s sister, Aileen.  Partially to help curb some of the behavior problems we’ve had recently due to some sibling jealousy(brother has a site, why can’t I), and partially because she’s completely awesome and hilarious and I wanted to post many of her stories, but they didn’t have a place here…now they do! 🙂 You can visit her over at According to Aileen: Life Lessons From My Daughter – Here are a couple posts you should read to see what an amazing sister she is 🙂

World’s Best Big Sister – Aileen playing with Braxton and her deciding to be an advocate for tube feeding without any prompting from mom 🙂

Faith, Hope, and Love  – Our weekend of fun

I know I’ve mentioned it before on this blog that Aileen has been really great with Braxton.  It continues to get better as Braxton gets older and is able to do more with her.  Braxton really enjoys playing with his sister now.  Aileen took over his Sit ‘N Spin yesterday, and as she spun around and made crazy sounds he watched and just laughed and laughed.  We all played catch together, and Aileen played alone with him and let him crawl over her and even helped him work on climbing up the stairs.

This past week was Spring break for Aileen, and Braxton got to join in on some Spring break fun.  We took Aileen to a Jumpy Place and let Braxton sit in a bouncy house while Aileen jumped.   He laughed as she bounced him, but wasn’t too sure what to do, so he just sat in the same place, but it was fun to see them together.  Yesterday, the kids played together and we went to the store to buy some clothes to wear to Church for St. Patrick’s Day and bought a couple movies too.  It’s been a fun weekend 🙂 Now to prepare for the back to school week ahead.

Picture overload of my two little loves enjoying each other:

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Hmm…where did I put my cape?

Yes, as in my superhero cape.  Oh, You didn’t know Moms were superheroes? How else do you think we can manage to run the house, keep the children fed and bathed, all the homework done, doctors visits attended, work in OR out of the home, schedules maintained….surely it takes SOME kind of super power to be able to balance all that! I truly believe that all mothers possess an inner superhero, and it’s about time for me to again channel mine. We’ve had a couple quiet months appointment wise, but that is quickly changing!

Look at that big boy waiting for the doctor!

Look at that big boy waiting for the doctor!

First, we had an appointment today with our ENT (Ear, Nose and Throat Doctor) to follow-up on Braxton’s ear tubes and hearing aids.  I wasn’t expecting the news I received.  First, the good news, Braxton’s tubes are still in place and look clean and dry. Woo! The doctor said tubes typically stay in place about a year, which we are coming up on next month, so he just said to keep an eye on them to make sure they don’t fall out.  If they do, we’d have to repeat the procedure.  I again mentioned Braxton’s constant congestion.  It really just continues to get worse for Braxton. He always sounds like he has a cold.  The Doctor said he still thinks this is due to poor oral motor muscle tone and didn’t think it would be successful for Braxton to have his sinuses probed because his sinuses are probably too small to really have benefit.  It will unfortunately just take more time and as he grows his sinuses may also help open up.  He mentioned that since Braxton also has a high arched palate, that takes up some space in the sinuses which could also cause the back up. I did ask what he thought about having his throat scoped to check for damage from all the vomiting or anything else that may help us in deciphering why Braxton refuses to eat.  He said it was probably more a neurological or sensory issue instead.  Then, the not-so-great news. He looked in Braxton’s throat and said Braxton’s tonsils are growing much faster than his mouth and are too large.  He didn’t recommend surgery right away, but he said it’s very important to now monitor Braxton’s sleep due to the enlarged tonsils.  I will have to wait for Braxton to fall asleep for about an hour and then watch him for about 10 minutes to see his breathing rhythm, note any snoring, and also note any pauses in breathing.  Pauses 2-3 seconds are not cause for concern, but pauses 5-10 seconds to where he gasps for air are very problematic. He also mentioned that having large pieces or amounts of food in his mouth would cause him to gag/choke due to the size of his tonsils.  This could very well be why he isn’t eating.  I’ll have to watch him when we feed again to note any gagging/choking.  So far it’s just complete refusal, and the few bites we do get in he does ok with. At least that I can recall.  Ideally, we’d like to avoid having the tonsils removed because not only is the recovery difficult, it could also cause extreme setback when it comes to eating, however, breathing trumps everything.  If he isn’t breathing correctly, we need to remove his tonsils.  Ugh, more surgery. Poor kiddo 😦 After we met with the ENT, we went over to see the Audiologist for an in-office hearing test.  Braxton is still a little young for good results, but he did ok with the booth test and the results were fairly similar to the last ABR we had.  The audiologist said she does think we need to have at least one more ABR to confirm the results of the last test and to make sure his hearing hasn’t gotten any worse.  We’ll try to get that set up this summer.

I’m enjoying the next 2 weeks of quiet because I have my work cut out next month.  We just added a visit to an Occularplastic Surgeon to discuss the possibility of the Jone’s Tubes should his ophthalmologist not be able to probe his tear ducts as we discussed last visit.  We will be scheduling the probing and irrigation this summer, and if that still doesn’t work we will have the plastic surgeon on hand to go ahead and do the reconstructive tear duct surgery. We’ll probably need to do some imaging since there is no way I’m letting this doc break bones without even checking the structure and investigating what else could be the issue.  That means we’ll be tacking on all the imaging everyone else wants done too.  Most likely an MRI of the Brain and Orbits will be done, and I know ENT mentioned a CT of the inner ear which I’m sure we can coordinate.  Will probably try to get that set for early May, because April is too full.  We then have our EEG scheduled the next week per our last neurology visit to check on brain activity and make sure there is still no seizure activity happening.  We will also see our Geneticist next month to go over the results from our Exome Sequencing.  Fingers crossed that we will finally get a diagnosis, or at least some hint about the underlying cause of all our issues.  All that on top of our regularly scheduled therapies.

Annnnnnd, Joseph just received a promotion at work! Yayyyy!! However, that means more training and certifications which will require him to be away from home. Boooo! Thankfully, he was able to make some calls and arrange the initial training around next months appointments so I don’t have to go it completely alone nor completely rearrange everything.  I’m a little uncertain of the schedule after that, but I’m mentally preparing for the time apart.  I’m very excited and proud to see his hard work finally paying off! It’s just like someone came and kicked the dirt up from around us.  Dealing with the initial shock and confusion of the kick is the hard part, but I know when all the dust settles, everything will be just fine.  🙂

Welp, I need to get back to looking for my dang cape!? I definitely need to channel my inner Supermom for the next few months.

Images from: Riveter Mom , Wondermom , and SuperMom

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