Thursday, March 25, 2010

Our life, our love, his journey.

You will find a new link at the top of the page titled Wyatt's Journey.

We opened our hearts and let it pour out.
Wyatt's Journey
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It's Thursday....YO! Tweeps!



Read the directions here and start following!
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Monday, March 22, 2010

We're alive and well!

I realize I haven't posted since last Wednesday...but rest assured, we're alive and well!

Last week was a busy week with a neurology appointment for Wyatt first thing Monday, followed by an IEP meeting for him on Wednesday, Maggie's 2nd grade open house and music recital on Thursday evening and finishing the week off we attended the Cub Scouts blue and gold banquet on Saturday morning.

The neurology appointment was the same old stuff. It feels much like running in circles while trying to get something important accomplished. Frustrating and disheartening.

I've been taking time to create a new post, a summary of sorts, that explains in greater detail about Wyatt's medical status. I realize I've been very vague in descriptions up till now, but I'm hoping this will shed a brighter light into our lives for you and, you never know, maybe it will even answer a few questions you may have had about us.

I'm trying to find the balance of sharing information and opening up more. What can I say....I'm a work in progress! (although, aren't we all?!?)

Wyatt's IEP meeting went very well. In the past these meetings have left me coming home frustrated, confused and angry that we have to fight so hard for services that should be provided for him. But this year I came home excited and overall pleased with what is in place. I think some of that is from the approach that we have adopted over the past few years and how we view things now, but I also think it's the 'team' that we have this year. Everyone is on the same page and seeing the same things, so it's easy to talk to them and change/modify things as needed. I can't express my appreciation and thank them enough...this school year has been wonderful for all of us so far! The therapists (PT, OT and ST) still leave a LOT to be desired (I truly question their experience and expertise every time I talk to any one of them) but that fight is on hold. The rest of the team is putting in motion something that has not yet been used in the school district (from what they were saying), but they are excited to try it with Wyatt next year and it certainly sounds like it will greatly benefit him! He goes to school on a modified schedule...he stays home for physical/medical reasons on Tues. and Thurs. and attends school M,W,F. If it all comes together, he will be able to 'attend' school via his laptop from home (the school purchased the laptop for him this year for other educational reasons) and be able to interact with his teachers/classmates and see/hear what they are doing during class time. Isn't that neat?! We're excited for this and are anxious to see how it all comes together. There are a lot of details to be worked out and I'm not sure how exactly it will all work just yet, but it sounds very promising!

Maggie's open house and performance was great. It's always so fun to see what they have accomplished and created through out the school year thus far. She had a great time singing and showing off her classroom to us! Her teacher seems very impressed with her abilities, as are we.
 Maggie's desk and work. 
Jilly (the biggest 'ham' of the three) really enjoys seeing the kids' classrooms.

We then ended the week by attending the Cub Scouts Blue & Gold banquet on Saturday morning. It was held bright and early (seriously, who scheduled this thing at 8am...45 minutes away from where we live?!). But we arrived on time and we were all bright eyed and bushy tailed.
There was a breakfast buffet that partially made up for the early Saturday morning time frame and made us all more pleasant. 

This is Jilly's, I'm happy I have pancakes with syrup, smile.
Wyatt and his den received their tiger patches proudly and were very excited. Bryan was also recognized and had several families compliment him on how well he's doing as a den leader.

I'm very proud of both of my boys! It was a good day.
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Wednesday, March 17, 2010

Yo! Tweeps

Would you like to make new friends on Twitter?
Then, please, join in and play along!

1. Follow the first 5 Twitter Twaffic hosts listed on the linky. Netiquette and courtesy! They'll reciprocate your love on twitter!


2. MAKE A BLOG POST LIKE I am doing. Copy and Paste these directions.


3. Grab the YO Tweeps Twaffic Exchange Button pictured below. Put him in your post.


5. Put YOUR OWN twitter icon / link on your blog.
Follow AandBDestephano on Twitter


6. Now link up your post below in the Linky!
(or here because the linky thingy isn't working right in my posts....?)


7. Visit some other #YOtweeps linkers on the list.


8. Follow them if you choose and shout out to them on twitter that you are following so they can instantly follow you if they're on.
(Follow their blog as well if you're interested.)
Example: @AandBDestephano #yotweeps I'm following!


9. If someone follows you JUST reciprocate on Twitter. It's that easy.

Spread the word. WE'LL BE BACK every THURSDAY TO DO THIS AGAIN!(yes THURSDAY)
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Sunday, March 14, 2010

The stars

The other evening as we were arriving home the sky was crystal clear and the stars were shining bright.

My kids love to look at the stars....who doesn't like to gaze up into the universe every once in awhile?!?

Maggie was asking where the little dipper was and looking for Orion's belt.

Wyatt was commenting on how many stars he could see.

Jilly piped up excitedly "Look! I found where we live!" while pointing assuredly, showing us the exact spot. It left me giggling a bit and looking at where she was pointing. Then she said "I found Mars too!" and " oh! oh! oh! And there is You-piter!" I asked her "Do you mean Jupiter?" emphasizing the J sound. She looked at me slightly confused and said confidently "No, I see you-piter." I commented back "Sweetie, I think it's called J-upiter." again, emphasizing the J. She looks at me annoyed and her arms straight at her sides "No, it's YOU-piter." As she draws the YOU part out long and clear for me to hear because, certainly, I wasn't hearing her correctly.

Oh, this girl. She is something else with that twinkle in her eye and devilish grin. Confident, strong willed and so cute...you gotta love her. (and we certainly do!)
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Friday, March 12, 2010

It's been a week...

It's been an interesting (as always!) and slightly unbelievable (at times!) week.

Monday morning I received a phone call from the principle of the kids' school. Usually, I receive calls from the nurse or Wyatt's teachers about something that is happening or to tell me he's not feeling well...we communicate quite often. It's not unusual to see the schools phone number on my caller ID. But getting a call from the principle was slightly out of the norm.

My first thought was that something happened to Maggie or Wyatt....a slew of thoughts running through my head of what it could be. Then as she elaborated the time line and said what child it involved, I started thinking she was tracking me down for a forgotten excuse note or my absent signature on a form. I couldn't help but feel I could somewhat be in trouble for forgetting such things!

However, my scattered thoughts were slightly incorrect...the kids were safe and well (thank goodness!), and it certainly wasn't anything I had forgotten (phew!). But there was a situation that happened at school that indirectly involved Wyatt and put him in harms way. But the biggest shock was that this situation happened in October....5 months ago! And why am I just now being told about this, you may ask? (I certainly did!) Well, it's quite simple, really, they didn't even think of calling us. Nice, huh?

I don't feel I should go into all the details about the events, but I will tell you the situation is being handled in a courtroom. The principle told us of the situation because the asst. District Attorney would like to talk to us. I certainly hope that the person who carried out this action will be held accountable for ALL the charges that are in question.

That was our Monday.

Tuesday the weather here was beautiful and incredibly refreshing! The kids enjoyed running and playing with their friends for a short while after Maggie got off the bus. But we then had to get ready for our evening...we visited the school for the 1st grade open house and musical event. Wyatt enjoyed showing off all that he created in school this year and he certainly enjoyed the singing performance! It was all very fun to see! A great evening to a beautiful day.

Wednesday everyone was off to school by 8am and Jill and I settled in for a quiet day. It was a short lived thought. The nurse called by 11am and said Wyatt wasn't feeling well. So, Jill and I made our way to the school quickly to bring him home. It appears his body was paying for all the extra fun he had the day before...he slept the rest of the day away.

Today is Friday. It's a mild, gloomy, rainy day. Jilly had a long night of bad dreams and just not sleeping well. She was unable to relay to us what the problem was, but I believe we found the reason this morning...stuffy/runny nose, cough, sore throat, very tired. It appears today will be a quiet, snuggling, resting kind of day.
Maybe I will even fit some reading in today. I started reading Harvesting the Heart by Jodi Picoult when we were at the hospital with Wyatt last month. It's got my interest and is promising to be a good read.













And since sitting down here to add this new post, the nurse called. Like I said, not unusual for the schools number to be on our caller ID. Never a dull moment...
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Friday, March 5, 2010

One of those days....

I'm sure many of you know the days...the days filled with frustration, worry and or confusion. I'm relieved it's nearing the end of the day....it's friday, the weekend.

It's been one thing after another this week....from having to schedule and prepare for another surgery, to the pharmacy and the very large copay amounts for medication, to the ongoing battle with the health insurance company, to a doctor not returning our calls to answer questions, to the emails from the school nurse to inform us of issues that Wyatt is experiencing, to the email from therapists telling us that what he's been working on for years is becoming increasingly difficult for him and their needing to change their "focus", to this, to that and the other thing. Worry, worry, worry....stress, stress, stress!

I suppose it's just been one of those weeks that accumulated into one of those days...the days that make me sad for my boy. The days that I wish a wave of a magic wand would take away all of his pain and struggles. And he could run and play like every other energetic little boy and not have his body pay for it later. The days that you realize that your life is very different than the majority of your peers.

The days that open your eyes at how incredibly blessed you are to love and care for these three special little people. The days that you decide to celebrate the inchstones and not focus on the milestones. The days that you thank the Lord for everything...including the times of sress, worry and frustration. The days that remind us to trust and have faith.

We're going to enjoy our time together as a family this evening by watching the much anticipated iCarly episode "iSpace Out".
We're together. We're happy.
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Monday, March 1, 2010

The solar system and (another) doctors appointment

Maggie is in 2nd grade this year (crazy!) and what comes with second grade?!? The very first science project....the solar system! Maggie was so excited and had big plans. After some intense stress related to getting the solar system just as she wanted, we finally got it perfect. (if you ask me!)

From what I hear everyone really liked it....and no one else had a cool handle on the top of theirs. Go us!

While we were out and about today we stopped to pick up the 3rd Harry Potter book for my bookworm of a girl. Harry Potter and the Prisoner of Azkaban (Book 3) (Hardcover)

She flew through the first two in the series at lightening speed. In fact she flew through them both in just a few short days and upon finishing each, she decided to read them for a 2nd time.

She was very pleased and has yet to put the new book down. She is thoroughly enthralled in Harry Potter's world!

This morning Wyatt had an appointment at Dupont with the ENT (ear, nose and throat specialist). He has seen these doctors a few times in the past. One of the doctors specializes more in the ears and he placed tubes in Wyatt's ears when he was 18 months old because of constant fluid behind his ear drum that was affecting his hearing.

The doctor we saw today deals more with the nose/throat. We started seeing him last year due to the respiratory problems that Wyatt experiences. At that appointment, he found that Wyatt has laryngomalacia. This would be another problem caused by the neuromuscular condition and the muscle weakness/wasting in and around the throat and neck areas.

However, this appointment was to discuss the chronic sinus infections that he has been battling all this past and current year. After discussing what medications he is already on, what many antibiotics were used to no avail and what other remedies we have tried, it was decided that the only next step is to try removing the adenoids. And at that point, if they are already putting him under anesthesia, then he feels it necessary to remove the tonsils as well.

::sigh:: 

This is something I was hoping we could avoid. I know in my head it's the next step and it may help....but I know it's also a tough recovery. It hurts.

The doctor went over the risks and possible complications with us, many the same as with any surgery, some different. Wyatt will be admitted to the hospital and they are reserving him a bed in the PICU (pediatric intensive care unit) for after surgery. The doctor said it's a possibility that he'll need to stay on the ventilator for awhile afterward, given his current respiratory issues. He was unable to say for certain how many days he'll be inpatient, as this surgery is typically done as outpatient. We'll just have to take it day by day. I suppose, you never know. This boy of mine is good at throwing us curve balls....he could be doing great the day after surgery!

The surgery is scheduled for April 9th.

This afternoon I was also able to talk with Wyatt's GI doctor about the results of the impedance probe that he had done awhile back. It did show that he's refluxing multiple times an hour around the clock. Not good! And during the test he was having what we consider a 'good' day....I would hate to see the results of a 'bad' day! It was decided that he'll be trying, in addition to his current reflux meds, a prokinetic medicine called erythromycin. This medicine is supposed to empty his stomach faster, which in turn will help lessen the reflux (hopefully).

I also talked with the immune/allergy office and was told the cystic fibrosis testing was negative. Yeah! Check that one off the list!
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