Sunday, September 26, 2010

A week in review

The weather is changing and it's just beginning to feel like Autumn in our small, rural part of the country. I thoroughly enjoy the changing of all the seasons. Watching the horse drawn farm equipment harvesting the crops, the transient change of colors on the leaves before they float effortlessly to the ground and the delightful seasonal events which create cherished family memories each and every year. The seasonal change from a blazing hot summer to the crispness of the Autumn air can be so refreshing to ones spirit.

Since I last updated, I have spoken with the urology clinic regarding the lost paperwork that was so vital to deciding the next step in Wyatt's care for that specialty. We talked things through and we were asked to recall what was recorded and noted in the paperwork the best that we were able, instead of starting over, which I was thankful for. The doctor decided he wants to move forward and schedule a more invasive test to determine if there needs to be more aggressive treatment to keep his urological system 'safe.' We have the option to do the test sedated or unsedated. He needs to be sedated. There is no doubt in my mind...we can not put him through another procedure such as this without being sedated. It's pretty simple, I will not let it happen. The problem lies in the sedation. The last two times he's been sedated he has had complications. Is that because of the stress that the anesthesia had on his body? Maybe. The stress of the procedures themselves on his body? Maybe. Or a mixture of both? Maybe. Fact is, we don't know. And we're weary to put him through another sedation, unless the benefits outweigh the risks. So, we were urged to call the neurologist to ask if the sedation would be safe, or if we should  try to move forward with treatment without the results that this test would provide. Yes, this is the same neurologist that has not called us back for 6 weeks to discuss the results of the testing that Wyatt had in Atlanta. It's safe to say I'm certainly not optimistic that I will ever receive a phone call back at this point in time. But I did my motherly duty and called early in the day Friday to leave him a message regarding the test and sedation. I'm not holding my breath....

This week was another tough one. Wyatt still hasn't bounced back like we were hoping and in fact was sick already again. He attended school on Friday, but has been struggling more (again) since then. His legs are hurting him a lot, his belly is continuously uncomfortable even while draining and he's just tired. But he doesn't want to miss a thing, which makes it hard.

To start off the weekend we were able to enjoy our community's homecoming parade that was held right in the middle of our little town.

I didn't take many pictures, but will share this one that I snapped of Jill enjoying the abundance of emergency vehicles with their loud sirens and brightly flashing lights. Wyatt had great fun seeing all his friends and teachers as he was strolling the parade route with his cub scout pack. 

The next day we accomplished a rather considerable feat. A great birthday surprise, for an even greater girl, that included weeks of planning and heavy lifting. Maggie was given the gift of a piano (and lessons) for her upcoming birthday! A completely exciting surprise to her.






All of us have been "tickling the ivories" consistently since the piano arriving into our home. It's exciting for Bryan and I to see the kids so excited about music, as we were both greatly involved in different parts of music during our school years, including college. All we need is a vibrant multi-colored bus, a la the partridge family.







*A special thanks to our family for helping get the piano to and into our house.


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Friday, September 24, 2010

Prayers

I woke up and went about our daily routine of getting the kids ready and on the bus this morning. After Maggie and Wyatt were on their way to school, Jilly was eating her breakfast and Bryan was making his way to work, I sat down at the computer to learn that another beautiful boy earned his angel wings last night. Samuel had Mitochondrial disease. My heart is aching and so broken for his family.

~ Rest in peace, sweet Samuel. ~

Please pray for the Knight family. I am.

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Tuesday, September 21, 2010

Awareness week

This week is Mitochondrial Disease awareness week. 

Several years ago I had never heard the words "Mitochondrial disease". I was not aware. Are you?

"Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.  Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease.   While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers.  Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.  Still others aren't diagnosed until after death. " - www.umdf.org -

There is currently no cure. But being aware, raising awareness, could bring us one step closer.

I hope.



From the Vote4Hope website.....
"This year Pepsi is giving away millions of dollars to fund good ideas that make the world a better place. We have a good idea that will dramatically help millions of children affected by rare disease, and we can win a grant that will allow us to fund this important effort! Fund Hope For Sick Kids – it’s as easy as a click of a button everyday in the month of Sept. Make A Difference – Vote Today!"

Will you hope with us?
Vote4Hope.
 Please click the button and vote today, and every day left in September!
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Friday, September 17, 2010

I'm tired.

I'm not referring to physically, per se, but a mental and emotional state.

Since starting school, with his modified schedule in place (attending only M, W and F's) and the first full week of school being just this week, we're seeing a change in Wyatt. He's tired, his body is more tired. His pulse-ox machine is alarming much more due to his heart rate consistently dropping too low. His body hurts more. He's needing to be carried throughout our home more often than not. He's able to sit in his wheelchair, but the size of our home is just too restricted for him to actually move about freely, without running into and over everything in his way. Which he does do while maneuvering to the back of the house to the ramp each day. He feels very accomplished to make it through the rooms of our home without running over, into or through anything...it's much like a game. Thankfully, he thoroughly enjoys games of every kind!

We battle through these changing circumstances, as we always do, but it's hard to see changes. There tends to be a limit on the number of days that I can put on my happy face and live in my own little bubble of slight denial before I run smack into the wall of reality.

I called urology today to follow up on our visit with them in July. I had dropped off paperwork for the doctor in early August, while visiting for a different appointment, and had not heard back about their thoughts and any next steps that were necessary for the situation. I received a call back from the office fairly quickly today. The person on the other end was perkily asking when I had dropped off the paperwork and to whom, because they had no record of receiving it.

Oh, yes. She was not joking. And she didn't seem even half as concerned as I was becoming.

They had lost the paperwork that was to be "so important" for the doctor to decide what route to take next. This paperwork, which we put a lot of time and energy into. I'm very frustrated and wanted to scream....but all we can do is laugh in our annoyed state. This is our life, after all. We can't expect things to go as planned. It's just how we roll...

Along with the frustratingly laughable event of  losing the important papers, we have yet to receive a phone call to discuss the long awaited, much anticipated testing results from our trip to see Dr. S. It's been nearly 5 weeks since we received these results and promptly contacted our neurologist (who also received his own copy of results). And we have yet to talk about the findings with Wyatt's leading doctor. And that's certainly not for the lack of trying on our part.

After conducting my own research and relying on the knowledge of fellow Mothers, I'm 98% sure I understand what the results are showing. But I'm frustrated that after 5 phone calls (possibly 6...I don't clearly recall) to the neurologist asking to speak to him, that we have yet to get a phone call back. I've offered the idea of just making an appointment for a Q&A to make it more convienant, we've had questions about school and Wyatt's health plan/IEP, I've asked if we should just make an appointment to travel back to see Dr. S again....but I have not gotten any response other than his assistant telling me "the doctor said he will call you."

When?!

I know it doesn't really matter what the results say. It's not going to change the way we're caring for him. It's not going to take away his pain. It's not going to make his body do what it's supposed to and when. But we just want to talk about it with the doctor that we know and who knows us, and most importantly, Wyatt. Are we asking for too much?

Today I'm tired of wondering, worrying and stressing.

I'm tired.
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Tuesday, September 14, 2010

A day to remember

This past weekend we visited our local "feed and supply" store for their annual "Furry Friends Field Day". This is always a fun filled event that consists of carnival games, the local travelling zoo, pony rides, door prizes and a large variety of animal rescue groups showing off their animals along with spreading awareness (and taking donations, of course).

There were sweet, itty bitty puppies and lovable dogs of many breeds.

I do believe the kids' favorite rescue area was the large parrot rescue. The birds were beautiful, gentle and big! They allowed each of the girls to hold the different breeds. And a very thoughtful gentleman brought out a large parrot for Wyatt to hold as he and I waited for his sisters. His wheelchair couldn't easily fit where the birds were and he was feeling anxious with the crowd of people around. It was very sweet of the man and we were very appreciative.



The parrot, I believe his name was Joey, danced while perched on his arm and was very interested in Wyatt.

Unfortunately, I was unable to get pictures of the girls holding their new found friends.

After we used up all the tickets at each and every carnival game setup and played, pet, ooohh'd and ahhh'd over every sweet furry and feathery creature, we departed from the Furry Friends Field Day to be able to attend the soapbox derby races that our town was hosting. Little did we know, Wyatt and Bryan would join in the races themselves!

Two happy boys, right there.

We were approached and told that a few select people had made an adapted derby car. They asked if Wyatt would like to take a turn down the track. He was stoked! And I do believe Bryan was pretty excited, himself, as the car was adapted to accommodate a second rider/driver.

Wyatt loved every second. The girls and I enjoyed cheering them on from the sidewalk and I couldn't help but get a little emotional watching both my boys' big smiles coming down the hill in their stylin' derby car.

The days can be hard with the discomfort and pain that Wyatt feels everyday. He still smiles, we smile, we've learned and adapted to our "normal", but we know our normal is very different than that of other families. This day, this afternoon, seemed "normal", or at least it felt close to what a family and boy would be doing on a Saturday afternoon. It felt so good to see him smiling the whole way down the race track. It felt so good to hear the girls cheering him on from the sidelines and seeing their happiness for their brother.
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Thursday, September 9, 2010

The first week, seriously.

The first week of school went pretty well. It was pretty uneventful as a whole....and then we got sick.

Seriously. The first week.

This does not bode well for the rest of the year!

Not good, I tell ya. Not good!

Jilly came down with some sort of 24hr stomach thingamabob. And then Maggie started the first cold of the season. Which quickly spread to each and every one of us, naturally.

Maybe I didn't stock up on enough Clorox wipes yet? I'm now out of my stock, by the way! Or I regretfully forgot my germ fighting skills from the end of last school year? I suppose I should start making everyone hand sanitize upon entry of my home again!

Whatever the reasoning, I'm now sick, they were all sick. Blah!

Otherwise, things are pretty low key here at the moment. I'm STILL waiting for a phone call from the neuro about the results of the muscle biopsy and subsequent testing. Oh, yes. I called again on Tuesday. It's been the 3rd, maybe even the 4th, phone call to him now and if I don't hear from him soon I'm about to walk into his office, with the 61 pages of testing results in hand, and wait until he will talk to us!

At least I do enjoy talking to his lovely assistant each and every time I call, she's always so helpful and understanding. I really appreciate her demeanor (especially after just dealing with one of our Home Health Care companies and their incredibly rude personnel)!

On the agenda for today is sneezing, cleaning, coughing...and repeat. Lots of fun to be had here! Although, I can't complain too much, I at least feel better than I did yesterday. It's progress!
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