Monday, August 30, 2010

How time flies....

5 years ago today.....










 Jilliana decided she was ready to enter our world.














A petite 4lbs 15oz, 6 weeks early....












and perfect in every way.

















She melted our hearts and we fell instantaneously in love...again.













Our sweet baby girl who has brought so much joy to our lives has turned 5 years old today.
 My, oh my! How time flies....
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Busy days

A lot has happened since I last posted, life changing events.

First and foremost. We received Wyatt's muscle biopsy and testing results from Dr. S. 61 pages of complete confusion to a family that did not attend medical school to study medicine. I studied at the school of Wyatt, personally, and while I may understand a great deal and am able to research till I know as much as I possibly can about all things medically relating to our family, this was slightly mind boggling. Granted, the intensity of mind boggling that was taking place could partly be because I was just overwhelmed that the results were actually HERE and in my hand (or on my computer before I printed them...they arrived in a state of the art encrypted type email).

Anyway, moving on....there were things found within the testing that was performed that could have possibly lead us to the long awaited "answer". We're currently waiting (since last MONDAY!) for a call back from W's neurologist to give us some direction and answer a few of our questions. So, before I start spewing medical terms and act as if I fully understand everything that I'm relaying, I will wait to speak to the neurologist about the results and get answers to our questions so that we may understand more of what was found.

Secondly, we had Wyatt's IEP meeting last week. If you remember, I was stressing about it for quite sometime before the scheduled date, as you saw evidence of in this post. Well, that stress was greatly magnified after receiving these new and confusing results only DAYS before our meeting. In the end the meeting went well and was successful. I think we relayed what was needed and were able to set up a plan until we speak with the neurologist and get clarification and more direction as to what needs to be in place for the school. Did I mention I called him last MONDAY and FRIDAY and we're still waiting for a return phone call?!

Next on the events list is a sweetly special day.
Jilliana's 5th BIRTHDAY!!!!

Today also happens to be...

the first day of the school year!

Oh yes, it was a busy morning in our home! There was an over abundance of nervous energy in our household. But the big kids are now off to school....and no phone calls from the teachers or nurse yet!

Jill and I are having a fun day! We just finished a play date with our neighbor friends and are now eating lunch (with birthday cake, of course!) More playing is planned for the afternoon, as well.

We celebrated a bit of her birthday yesterday afternoon.....















































My baby girl is 5 today. Where did all that time go?! Wow.

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Wednesday, August 18, 2010

Changes

Things have been slow moving for Wyatt for the past couple of weeks. 

The heat has been bothering him more and more...and I'm not referring to 'extreme' temperatures. Usually we could beat the heat issue by playing outside at dusk or first thing in the morning, but now even those times of the day are showing to be too much for his body. He begins running 101-103 temperatures, his body pours sweat off of him, his skin turns red and or he goes pale, he hurts, his stomach tends to drain out quite a bit more with twice the amount of force as his usual....it certainly puts a damper on the fun. There are times only a few minutes cause this reaction in him.

His arms and legs are "feeling funny", falling "asleep" and causing more pain quicker these days, as well. 

It sucks! That's the only words I have to describe it anymore. 

With the school year quickly approaching, I'm becoming increasingly anxious about how we're going to explain everything to his team of teachers, so that they're able to help him while at school. He wants so badly to just play and have a great time that he will push himself so far that his body takes days to recover. It's hard for me to explain to someone else when I, myself, feel as if we're always winging it with each curve ball that his body throws at us and we're just needing to keep trying different things to see what will help the situation most. It then gets trickier with the child who would rather not tell anyone (other than us parents) how he's really, truly feeling, especially with the risk of drawing attention to himself and or the possibility of having to miss out on what his friends are doing. But, as we have learned over the years with said child...ignoring one problem for as long as possible only leads to a bigger problem, or even several more.

Where do I start? How do I start? A typed overview...a chart...a picture tutorial....a PowerPoint presentation?

Hmmm....





Don't be mistaken with my little pity party here. We're finding fun indoor activities to avoid the repercussions of being in the heat and we're making the best of it. He's still the same smiling boy when he's feeling well....it's just becoming increasingly tricky to get there.
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Monday, August 16, 2010

New friends

We found a new friend. 

I feel as if I should be showing a little more enthusiasm about this.
He lives in a large cluster of flowers that are planted in a pot on our deck. Yay...I guess?!
He's a little bit fascinating and whole lot creepy.
I do believe the feelings were mutual.
Jilly loves our new friend and adoringly calls it her "little critter". 

As long as our friendly playdates only occur outside, I think I'll be ok. 




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Friday, August 13, 2010

It takes a village....

What a day, what a day, what a day.

Yesterday Wyatt had an appointment with GI, Dr. M-R.

It was a long, thoughtful and productive appointment. Dr. M-R didn't have a patient waiting after us, so it was 'nice' to talk at length about everything. It's so much more helpful than being rushed through an appointment and left with the feeling of your head spinning atop your shoulders....it was nice.

An eye-opening talk in some ways for us.

We talked about W's elevated liver (and even kidney numbers that we weren't aware were elevated. No thanks to the urologist that we just saw 2 weeks ago!), his poor motility/absorption, the amount that we're draining from his stomach and how often...and most important in a lot of ways, his discomfort and pain. We talked briefly about TPN (total parenteral nutrition....nutrition/fluids that are administered through his veins, not GI tract). We don't feel we're exactly to the point that we need to move forward in that direction, but we know it's the only next step. For right now continuous j-tube feedings and draining from the g-tube is working "ok:". Certainly not perfect, not even great, but it's ok.

You know the saying "It takes a village to raise a child"? This saying popped into my head during our appointment, but modified slightly to fit the situation. "It takes a country to care for a child".

Dr. M-R brought up the idea of seeing a GI and motility 'expert'. Specifically, Dr. F in Boston, Mass.

Apparently, we don't live nearby any of the expert physicians that we're needing to see these days...Texas, Georgia, Massachusetts.

We expressed that we'd like to wait for the results from the testing that he had done in Atlanta before travelling to Boston. Not that those results are going to change anything, but the thought of travelling and planning an inpatient stay in another city, in a different state, before receiving those results, not to mention while the new school year is starting, makes me feel as if my heart will pound out of my chest. One step at a time, please! So, in the meantime Dr. M-R will be contacting Dr. F and relaying Wyatt's medical history to him while asking for his opinion.

We left the appointment with plenty of prescriptions for medication, some new and some old. The need for follow-up phone calls. Along with orders for blood work and a direct appointment for the lab.

There's a lot to think about after an appointment like that. One day at a time...one day at a time.

**************

On a more fun note...after the appointment we met up with the girls (and Grandma who was watching them) to go shopping for school supplies. Book bags, crayons, markers, folders, notebooks, pencils, pens, highlighters, erasers and more! I can't believe the summer is coming to an end and the start of a new school year is quickly approaching.

The kids are checking the mail each morning, eagerly waiting for the letters that will tell them who their teachers are for this year (while I'm checking the mail for a letter from Atlanta and Dr. S with test results...but that's besides the point).

Since this was typed on Wednesday (yes, I realize it's early Friday morning by now...I just couldn't get back to edit any earlier.), but hardly wordless, I will leave you with recent pictures of just a days worth of our summer fun (on a cooler summer day).
















































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Wednesday, August 4, 2010

Wordless Wednesday: Bubble fun



(Maggie's home from camp and she had a great time! I'm now much more at ease with all my 'chicks' back in their 'nest'.)
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Tuesday, August 3, 2010

Tube changes = no fun

Wyatt had his GJ tube changed today. Blah!

It's a dreaded day in our home.

Tube changes are not fun. They couldn't be considered easy by any means (in this family)....anything but easy.

Tube changes create a lot of anxiety for Wyatt. I can recall the exact instance that created this anxiety issue....and if I could erase the past and do it all over again, I would in a heart beat.

But the good news is our boy was able to go through the tube change without sedation.

::insert the cheering and clapping::

And while the beginning was really scary for him and quite heartbreaking for us parents (and a tad frustrating....as the change is not nearly as painful as he thinks and expects it to be), the last few minutes of it he was able to take deep breaths and calm himself down from the screaming frenzy that he worked himself into. That's progress! I'll take it.....and now have a renewed hope that one day, with time and more tube changes, his anxiety will lessen. And maybe, just maybe, he'll realize that they aren't all painful like that one experience with a nurse practitioner who no longer works at the hospital (and thankfully so)!  

After getting the sparkling new tube a stop at the gift shop was in order (for sure)!  I do believe our time wandering around the gift shop took longer than the actual tube change itself. 

We are now counting down the hours, minutes and seconds until we pick Maggie up from camp in the morning!

Ahhhh! We're all so excited to see her and hear about her time at camp!
 
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Monday, August 2, 2010

Summer camp

We eagerly gathered and purchased the items on the needed list. I marked each and every item with initials or name and carefully packed the duffle bag and backpack, taking extra care to be sure that everything was in it's place and accounted for.

We loaded the belongings in the van and started the drive to our destination, where we anxiously dropped my big kid off at her first summer camp experience.


She was counting down the days from the time we registered her. She was nervously counting down the hours until we needed to leave our home to get to camp within the allotted drop off time frame. She was on the verge of tears during the hour long car ride. We were greeted by a young counselor by the name of Karla, who led us through the cabin to a room that was plentifully filled with stripped down bunk beds. She turned around and smiled...it was just as she had pictured in her mind. She picked a bottom bunk, set her duffle bag between the adjacent bed and laid out her sleeping bag onto the mattress. We each gave her one last hug for now, another kiss and assured her we'd miss her. And we then loaded the remaining family back into our van and drove home, leaving Maggie behind with her fellow campers to enjoy her first summer camp adventure.

I hope she makes friends.
I hope she has a wonderfully memorable time!
I hope she's not scared or missing home too much.

*I hope she knows we can't wait to hear all about it!*
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