Tuesday, April 26, 2011

A Holiday: DeStephano style.

Reason is our soul's left hand, Faith her right.  ~John Donne


Our Easter was like many. Early to rise, donning our Sunday best for the occassion, attending Sunday school and Church service, singing praises and being genuinely thankful for this day. The rest of the afternoon spent visiting family and basking in the beautiful spring weather. 


It was a bright, warm day. The sun shining sharply throughout and accompanied by a cooling rain shower in the early evening hours. The rain creating a blanket of moisture in the atmosphere. 



We were greeted by family's "pets" and enjoyed each others company during our visits. 



As we visited with the doctor on Thursday, we talked about Wyatt's increasingly labored and distressful breathing. It was said that we could put him on his Bi-PAP machine during the times that his body needs the additional support (he typically wears it at night/sleeping) and/or we could try good ol' plain oxygen (O2) via nasal cannula. It appears to us his body and muscles just get too tired, which make his heart rate go up and breathing labored. So we were prepared to start the trial and error process. Wyatt has never liked the cannula on his face and has always detested having to use it when it was needed. So I expected a displeased boy assuring us it wasn't needed and was not helping in an effort to convince us to take it off. This weekend as his breathing became more labored throughout the morning and early afternoon we asked him how he felt. He gave us the signal and we pulled out the O2. He put it on willingly and we adjusted it to a suitable amount. It actually appeared to work, taking the pressure off his body and allowing his heart rate to slow down and him to take slow adequate breaths. It also looked to help with his hyperthermia while in the hot muggy air, as well. I'm not sure if it was a coincidence or if, perhaps, taking away the struggle to breath helped relieve his body enough to work more efficiently at regulating his temperature. We're not sure, just yet, but I imagine we'll figure it out as time goes on.

 

After a short while on the O2 he perked up, smiling, joking with us and laughing, looking more comfortable than he had all morning. Throughout Sunday afternoon/evening he would remove the cannula, play for a short while and then come back to put it on. While receiving the additional O2 he was perky and happy...when removed you could see him start to become moody, emotional and fizzle out. It was eye opening.



We arrived to our home again late Sunday evening, the kids all sleeping on the way and going straight to their beds in their dreamy eyed state. 


There was no school Monday morning, so the trio slept late and enjoyed lounging throughout the day. Recovering from the filling holiday. Though, Monday early evening we did have a baseball game to attend. We arrived armed with the oxygen tank and cooling towels ready for a test of our trial and error experiment. Surprisingly, Wyatt started requesting the O2 when he felt he needed it. That alone speaks volumes. Today, as the week progressed into our usual routine the trend continued...with the additional respiratory support generating a perky, animated, pleasant kid. 

It always amazes me to see the happy, perky kid that we know is in there emerge when we find that intricate balance that his body desires. As he requires more support, it's typically a somewhat gradual progression reaching the point that I know something is up and my instincts are kicking in, but I sometimes can't quite pinpoint what the exact problem is until we start brainstorming and/or trying things. This was one of those times. My "Mommy radar" is silenced for the time being and all is well, for now.



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I Heart Faces: Pets


{Some-bunny loves you.}

 

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Sunday, April 24, 2011

Decorating Easter.


Easter traditions. Giggles and smiles. Memories to be remembered.


"Which way should I put it...upside right or upside down?"
- Jilly, while coloring Easter eggs - 

 

Happy Easter!
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Saturday, April 23, 2011

A change of roles.

On Thursday, the day of Bryan and my 10th anniversary, the littles and I visited school first thing in the morning for a fun, albeit wet, math class. Initially the teacher stood in front of the classroom teaching volume measurement with words, large bowls of water sitting in the middle of the coupled desks with containers of varying sizes nearby. Most of the children listening intently, except for the few in the back who were unable to contain the urge to chatter in their excitement. The teacher then let the herd loose to experiment, with instructions to transfer water to and from the differently sized containers. To compare and contrast. Smiles and laughter covering the room as the children learned through play.

Following our visit to the 2nd grade classroom we were on our way to the hospital. This year we had an appointment, unlike last year on this day, when the boy was admitted for the start of a month long stay. We had in hand our list of newly seen issues that have presented themselves since our appointment last month, scattered on the top sheet of paper in the notebook that accompanies us to most appointments anymore. Dr. R walked in just as Wy's vitals were being taken...he watched briefly and then proceeded to the assigned room.


This time to start off the appointment our boy came armed with his own pad of paper with questions for the doctor. A role reversal. Wyatt's doing a project for school which involves interviewing a select few to write a condensed biography about. He chose this doctor as one of his subjects. Out of all the doctors that Wyatt sees on a somewhat regular basis, Dr. R is the one that Wyatt seems to interact with the most. He's not willing to divulge all information when asked or chat the doctor up as if he was excited to be there, but he does talk to him more than has been seen before and has told us that he's his favorite. So, our boy fired off his own questions waiting eagerly for the doctors responses. Thankfully, the doctor seemed happy to participate. Though, not finished with the assignment until I was able to take a picture of him and his doctor side by side...silly faces required.

I have to say, I really love that the doctor didn't balk at the idea, instead he was engaged and constructed his best "silly face" for the camera. I'm not sure many of the others would have done the same for our boy.

 

Within the medical appointment we also discussed each of those pesky issues on our list...the need for more permanent central access, heart rate variances and inconsistencies, retaining and "dumping" fluids regularly, the periods of labored and distressed breathing, increased bacteria in the gut even during a round of treatment, drainage from the G and J tube, medications not being absorbed. It wasn't a real short and sweet list. It rarely is anymore. But after all was discussed we then talked about an important upcoming trip that we have planned. We had this trip originally planned for the past winter holiday season, directly after Christmas and over the New year celebration, but had to reschedule due to the medical whirlwind that we were swept up in at the time. It was disappointing to postpone, but it just wasn't the right time. We've now rescheduled the family fun and in a short couple of weeks will be on our way to Disney World. The kids are thrilled and counting down the days, but prior to our departure we have a great deal to organize and get in place to keep this boy on the right path while we're away. 

(And as you may have noticed the boy now has trendy new specs.)

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Friday, April 22, 2011

10 years.

This week I've been reflecting on the last 10 years. Thinking about each turn of event, the good and bad, each "door" that was closed and or opened...the scary, stressful and joy filled times that came about. It's been jam-packed!

10 years ago (yesterday) Bryan and I were standing before our family, friends and our God, reciting vows to each other and being joined in marriage.

I could never have planned these 10 years. We've experienced so much, growing as individuals and changing as a couple. Learning life lessons. I can't imagine my life without this man by my side. Holding me up when I need it most, quietly encouraging and supportive. Making the toughest decisions together, never alone. The one I gripe to, laugh with and run to for guidance. The one who puts up with my nonsense. My best friend, my husband.  

Very different as individuals, opposites in many ways, but bound by love. Learning to navigate the world, experiencing life and love together.

Thank you for an amazingly unbelievable 10 years! I love you.



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Wednesday, April 20, 2011

The sillies.

This is what happens when Bryan takes over my camera for a short while.


Wyatt needed a picture of him and I for a project that he's working on and we decided to have a little fun with it.

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Monday, April 18, 2011

Celebrating milestones.

Playing baseball is an activity that many young boys aspire to do. Maybe it's playing little league as a young boy or even attaining the ultimate dream of playing in the Major leagues with thousands of fans cheering in the grandstands of baseball stadiums across the country. Fathers dream of having a little boy and teaching them to play ball. It's the great american pastime.


Saturday morning the boys within our local little league were recognized in the opening day ceremonies, as each of their names were called and they proudly ran onto the field, giving high fives to the coaches and young players whose names were called before theirs. The parents cheering from behind the fields fence, withstanding the windy overcast weather, supporting their young boys dreams of playing ball.


When our baby boy was born 14 weeks too soon we were abruptly thrust into a new parenting 'world.' At first, unsure of our "new normal." But as we settled into this different place in our lives we began celebrating. Each and every milestone, both as parents and those of our baby. Many milestones that the majority of the world would not recognize as being something to celebrate, though to us an amazing feat. Some of the first milestones conquered were more for us parents: touching our frail baby without the fear of hurting him; changing a diaper which was only the size of a saltine cracker; "feeding" our son by holding up the small syringe that was connected to a tube in his mouth and extending downward into his belly and watching as only a few drops of breastmilk filled his system. As well as celebrating his hard work in this life as we cheered with each half ounce that he gained, keping his miniature pacifier in his mouth for a few seconds on his own, turning his head on his own and tolerating more stimulating touch each day. After he was able to come home from the NICU (neonatal intensive care unit) we began focusing on more typical milestones but to a much smaller degree, "inchstones," if you will. Taking in his required amount per feeding every 3 hours around the clock and keeping it down, feeling hunger and waking on his own, holding his head up for seconds at a time, and eventually focusing on purposeful movements of his arms and legs, smiling, laughing, experiencing sensory input that was uncomfortable for him but eventually learning how to adapt, sitting, using and strenghtening his muscles. Realizing some of our focus must be put to teaching him and his body ways to compensate for areas that may not be working as well as they could be.

I'm sure you're wondering what this all has to do with baseball. Well, let me tell you...playing baseball was something that we didn't see coming. Shopping for baseball gear with our son, playing ball in the yard and standing in the crowd of parents on opening day watching our son take the field with the other young players was something that we weren't sure was ever going to happen. We were celebrating yet another big milestone.


It was an overcast, chilly and windy morning. Wyatt's body was struggling in the weather, but we watched with smiles as he maneuvered himself onto the field lifting his fingers to give high fives to the other kids with the same hand that he was steering his wheelchair with. Bryan and I supressing the urge to shout "That's my boy!"


One more milestone to check off the list...baseball. Simply amazing!
God is good.




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Friday, April 15, 2011

Daddy's little girl.

Father-Daughter dance 2011

 

"So quickly you grow with bounds and leaps but the sweetest memories are mine for keeps!"
Author: Unknown

 

A night to remember.


"A daughter may outgrow your lap, but she will never outgrow your heart."
Author: Unknown


From a little girl so very small, how and when did you get so tall? 
Author: Karen Mortensen 


 

A special first dance.

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A week of firsts.

~ Last weekend was the first of the firsts. The boys had a sleep over at the Natural History museum, sleeping next to the dinosaur bones. It was a Cub Scout event for two of the younger Den's. We packed Wyatt's needed equipment for a night, along with the typical items needed for such an experience. With the boys dressed in uniform, the girls and I said "goodnight" to them for the evening.


Us girls promptly changed into our PJ's, preparing for our first all girl slumber party...NO boys allowed! While talking with the giggly pair I asked, "What should we do first?" Jilly exclaimed in her biggest voice, "EAT!!" And after more giggling ensued, we did just that. Earlier in the day a trip to the grocery store was made to gather our favorite foods requested for this event. We carefully prepared each, displaying them on the dining room table, but not before making our own little camp setting in the living room. We were now ready for our evening of movies and slumber party fun.


We all had a great time, the boys at the museum and the girls at our slumber party. And not one of us had enough sleep, but that was part of the fun...according to the children.

~ Monday came too quickly and thrusted us into the beginning of another week. However, the weather was beautiful for that first day of the work week. It was a quick peek into the late spring and early summer warmth, before quickly changing back to a more seasonally appropriate rainy state. We took advantage of the first glimpse of summer-ish weather and spent a short amount of time outside enjoying the sun. Until it was time to return inside to cool the boy off with ice packs in an effort to bring his rising internal temperature back down to the acceptable range. At another point in time that evening (not related to temperature) we also witnessed an event that we've seen happen recently when Wyatt's body becomes 'too tired' to breath appropriately, resulting in a racing heart and a boy who is laboring to breath. Thankfully, we're able to get him through these events with the respiratory support that we have here at home. But my mommy radar has been quietly alarming these past couple of weeks as we've seen these events a few times now, coupled with watching his heart rates rise to new highs and very rarely fall to his "normal" anymore. Something is up. 

~ Tuesday morning we took a trip to visit our home away from home to see the GI doctor. We haven't seen or talked with her for a couple of months now...another first. Dr. R, the doctor that had taken over "point guard" for Wyatt's medical team has done just what we were hoping would happen, in leading the team and being our "go to guy" for the many issues that need continuous monitoring. Thus, taking the pressure off of the specialists and having the ability to look at the whole child, beyond each individual specialty area. The GI doctor was very happy to see that we've reached a more 'stable' point for the time being, not without it's ups and downs, of course. But not being admitted to our trusty wing of the hospital every couple of weeks, either. It was a good appointment...catching her up to where we are now and with what's been happening. We'll continue to see her every few months for the time being, though I got the feeling that may end after awhile.

~ After the story of our experience with the YMCA's Tae Kwon Do class was passed around the community, there were plenty of people who were upset by what had happened. We're still in the process of talking with the YMCA, though I do get the feeling that my last attempt of contacting them has been ignored for the time being. But through this frustratingly absurd event came about something great, another first. We were approached by one of Wyatt's teachers in the hall during our weekly school visit this week. And within our conversation she mentioned her husband was connected with the local little league association and it was expressed that they would be happy to have our boy participate. I must admit, baseball has been something we were unsure of for various reasons, but if they were willing to allow him to do what he could do then we weren't going to stand in the way! To say it came together quickly would be an understatement. We talked with our friend Wednesday afternoon and that same evening was informed of the details. She was as excited as we were about this new experience for Wyatt! They had placed him on a team, talked with the coach briefly about the situation and had it all set up. She then cautiously stated that the first game was "tomorrow", Thursday evening. In an effort to convince myself, I thought "We can do this." Yesterday afternoon we went shopping for all the needed baseball gear....a glove, cleats, uniform pants. Wyatt was giddy! He was slightly nervous, but eager to learn and play. I didn't expect him to jump right in and play at first, though that's exactly what happened! He didn't miss a beat.


They put him right out on the field, showing him how it's done. Hitting the ball that was pitched to him on the first time up to bat, running the bases and learning the game. We could see him fading, but I knew he wasn't about to alert his new coaches. And for this first game we weren't about to dampen his spirit. He was feeling an emotional high that you could see written in the expressions of his face. It was amazing! The girls tried to busy themselves playing with their own newly bought, color appropriate gloves and baseballs. But their interest was waning. Jilly went on to play with new found friends and Maggie finished her homework, just waiting for the game to be over. 


~ As the team was dispersing we said our goodbyes to Wyatt's own cheering section of loved ones and it was apparent the boy was feeling the effects of the fun that was had. But he smiled while stating "This was the best day EVER!", reveling in the days events even in the midst of his increased pain and discomfort. It was worth it. To add to the evening, he was also given "the game ball." A first that will be cherished. He's now eagerly looking forward to the rest of the baseball season.




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Friday, April 8, 2011

Among the crazy.

I spoke with the representative of the YMCA yesterday morning.

::sigh::

He was pleasant, relaying that he spoke with the man. Did not tell me what his reaction was or what was said. However, the Associate Executive Director would like to meet with Bryan and I along with this man, "to talk things through." He expressed that it was completely up to us and he would understand if we would rather not meet. But he would like to. I responded by saying that I would talk with my husband and get to back to him with our decision.

We're still thinking about it. Though, prior to any meeting we will be expecting the YMCA to relay to us how exactly they plan to hold the man accountable for his words and actions. Along with asking what outcome they expect to come from this meeting.

A forced apology in a closed off meeting will not make what he said any more acceptable. Though, a public apology acknowledging his wrong doings in front of the entire Tae Kwon Do class that witnessed his acts, with our family and friends that want to be present, may be something that is more appropriate. An apology that can be used to teach the others of this class and show them that what he did was not OK. Including a detailed explanation as to why his words and actions were out of line. I think the children need to be aware that their "teacher" (I'm using that term loosely) was wrong. Making clear that the words he used were not kind and what they witnessed was not acceptable.

My initial emotional response after thinking about a meeting is that I would rather not see this guy and I certainly don't want to hear a word he has to say. During our multiple discussions during the class, I was unable to hold back the tears from streaming down my face as I looked at each of my children. I tried hard to stifle the emerging emotions. I was so frustrated, sad and feeling broken. Not only by this mans words, but by the situation as a whole. My son has a degenerative, progressive disease that has and will continue to take his chances of a typical childhood away. There is no cure, no treatment options. To know that we have no control over what happens within our boys body is indescribable, powerless, crippling. I know a few of you reading understand these feelings, and some to a much greater degree than I at this time. Quality of life is important to us...I want to see his smiles, I want to hear his laughs, I want to see him enjoying his days as much as possible. Watching this situation play out before me and realizing my words were not going to change this mans thinking,  knowing that Wyatt was being denied the chance to do something that he was so excited about, while his sister stands witnessing this unfair treatment was overwhelming. Which caused a wave of emotions to flood my heart. Hearing this man talk and the words he used, I have a feeling that seeing my tears and vulnerability made him feel strong and falsely in control.

My more rational side (yes, I do have one) is thinking a meeting would allow us the opportunity to voice our opinions and thoughts on the subject. Let him know, face to face, how we really feel about his words and actions. Inform him of his ignorance that was so boldly shining through and let him know that we received the message loud and clear....however, we're the ones in control. There is a lot I would like to tell this man. Though, we need to be aware of what exactly the YMCA is doing to hold him accountable for violating their mission and standards, for violating our sons right to participate regardless of his medical condition, before we go into a personal meeting. It's in their hands, their control, now too. If they're not willing to hold him responsible for his actions, then we need to be prepared. I'm not interested in arguing or just "talking things through", as the YMCA representative had put it. It doesn't change the fact that what he did was wrong. His words now won't change the words that he spoke at the time. No take backs, buddy.

Among the crazy that is this situation, the week has continued on like any other. A new PICC line for Wyatt, the first piano lesson for Maggie, an email which contained telling lab results from our last trip to Atlanta to see Dr. S, an email sent to the boy's doctor alerting him to signs we're seeing and need to be addressed, constructing a Solar system and another afternoon field trip to school. All in amongst "Our normal."


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Wednesday, April 6, 2011

Teaching a lesson.

On Monday I pressed that magical button in my email box, "Send". Not a moment before asking Bryan "Do we need to add more details?", "Does it sound diplomatic enough?" As he rolled his eyes at my concerns, with a huff, he responded "Just press the button." And it was done. We emailed our letters of complaint about what occurred at the Tae Kwon Do class. I sent them to several of the YMCA's staff to be sure our voice was heard. We even attached a file to the email, the YMCA's very own mission statement and standards that were clearly violated. We quickly received a return email and a prompt phone call from the Associate Executive Director of the YMCA branch. He was understanding, though shocked to hear of what happened. I talked with him for quite some time. Explaining what happened, how this man's words were hurtful to our family, in addition to the other parents that witnessed the event who offered their support to us during the class. We were not alone in hearing this mans damaging words.

The Tae Kwon Do classes are offered through the YMCA as a YMCA program, but taught by an outside 'company'. This company is small, owned and operated by the man who clearly demonstrated inappropriate behavior. His partner being his wife, who we originally talked with and explained our situation to...on two separate occasions. The first in person, with Maggie and Wyatt by our side. My husband pointing out our son's necessary attachments to be sure that she was fully aware before commenting. We mentioned to her that we would make his attachments as minimal as possible during the classes, in an effort to make it easier for him. The second a phone call the following day, in which she returned after receiving our original message inquiring about the class. And I briefly discussed the situation again. Both occasions we were told by her our son would not be able to 'advance' in the program, but he would be able to participate. During the class and one of our discussions with the owner, particularly after he confidently uttered the comment "you can't just show up and expect your son to be able to participate.", we pointed out our previous interactions with his wife. Now realizing that we didn't just show up as he hastily judged, he retorted with a snarky comment noting he was the owner and the only one that will make these decisions.

In my conversation with the Associate Executive Director of the local YMCA branch I was told this Tae Kwon Do company pays the YMCA to use the gyms and to promote their classes. And they are allowed to do so as long as they follow the YMCA's mission and standards, which clearly they did not. I was assured that he would "make them" refund our money. He was going to contact the couple to discuss the situation and then get back to me. We haven't heard from him again, as of yet. I plan to contact him tomorrow if he doesn't contact us before then.

I was conflicted on our actions beyond a complaint. Part of me wanted to return to the class week after week, standing our ground. Teaching this man a lesson. Possibly, a life altering lesson for him. A lesson that he clearly needs! I think Wyatt could potentially teach this man what strength really is, more than any Tae Kwon Do belt could offer him. Though, I'm unsure this mans head or heart is open enough to receive the lesson that could be taught by our incredible 8 year old boy. The other part of me wishes to protect my children from the cruel acts of this world as much as possible. I don't want to support this man's thoughts or his program with our money. I wish to teach him a lesson, one that he will never forget, but while shielding my children.

I feel the YMCA should discontinue their relationship with this man and his Tae Kwon Do company. I have an urge to send an informative complaint letter and/or email to each and every YMCA branch and community center that he teaches these classes at. He should be held accountable for his behavior. I want him to be held accountable. I don't think he should be allowed to teach children. I want no other child with a medical condition and/or disability to hear his harmful words. The Mama Bear inside of me wants to take him down. But "How far is too far?", I ask myself, wavering ever so slightly. I have the letters printed, addresses to the community programs that he's associated with written down and begging to be printed on stamped envelopes, ready to rock this arrogant mans world. I want so desperately to teach him a lesson.

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Friday, April 1, 2011

Heartbroken.

My heart has been shattered by discrimination this evening. I'm mad. I'm hurt. I'm shocked that people can be so ignorant in this day and age.

Our son was singled out in a group of his peers and embarrassed. Left to feel as if something is "wrong" with him because of his medical state, which he and/or we have no control over in the grand scheme of things. I believe God created our sweet boy just as he wanted. He's been perfectly created, just like each and every one of us. Tonight, my eyes and heart have been shown that not everyone believes in this. Teachers, instructors of a children's program, included. I can't even put into words how much this hurts me. To hear the words "What's wrong with him?" loudly spoken across a small gym filled with parents, siblings and my children's classmates, by the instructor who was now pointing at Wyatt asking questions that were not appropriate to be asked in front of these other families. The phrasing so hurtful. Drawing attention to the young child that just wants to participate but is now feeling anxious and unsure of the situation.

After unexpectedly sitting in the hospital all afternoon we hurried ourselves to the first TaeKwonDo class. The TaeKwonDo class that Maggie and Wyatt have been looking forward to for weeks. This program is provided through our local YMCA. We made sure to talk with one of the instructors weeks in advance to make clear the situation and be sure that he'd be able to participate. We were told it would be fine, however he'd not be able to earn his black belt. Which made me chuckle, as earning a black belt is the least of our worries! He just wants to participate, be involved. Included. He was so stoked for this class.

After the first confrontation in the very beginning of the class, the instructor then approached us again, in the middle of the class. It only got worse. At one point this arrogant man had the audacity to say "I don't have to work with you." In which I responded, "Yes, you do." We're paying this uneducated man, for goodness sakes, and my child has every right to be in there, standing and participating, just as much as the rest of the children in his class. We understood the risks involved, this man was not liable for anything that should happen, we made that very clear. All we wanted was for our son to be able to participate. That was it. He didn't have to earn belts or take the tests...just participate. And we were told that was too much to ask.

I plan to take a stand on this. To thoroughly inform the YMCA who they are supporting and what injust act was shown this evening. I'm disappointed. I'm heartbroken for my son who had such discrimination openly inflicted upon him. Yes, he may have tubes extending from his body, but he is like any other 8 year old boy in mind and spirit. Our 8 year old boy who knows he has challenges that other children do not, but chooses to put a smile on his face everyday, enjoying what he can and wanting to live his life with no boundaries. And I will fight for him to do so.
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