Monday, September 22, 2014

You Know It's Bad When Search and Rescue Gets Involved

Jason was backpacking last week.
He went to the Wind Rivers in Wyoming.
It's rugged terrain and they didn't have a trail to follow.
Jason has hiked these mountains before but the route they took this time was new to Jason and the guys he was with.

Of the four guys that went, there was one who always lagged behind.
Jason and the other three would stop often and wait for him to catch up.
On the second day of their trip the same guy fell behind and after waiting for nearly three hours, Jason and his friends knew that something had gone wrong.

They spent the rest of that afternoon looking for him and calling his name over and over again with no luck.
A storm was coming in and they knew they had to set up camp for the night.
By 1:30 that morning Jason was standing outside of his tent in a full on blizzard, repositioning the tent so that the 60-70 mile winds wouldn't be blowing right at it.

The lost hiker had his gear with him but Jason and the others didn't know if he had been hurt and they spent a mostly sleepless night.

The next day, they broke camp and headed back to where they parked their car.  They had 15 miles ahead of them and they hoped they would meet their lost friend somewhere along the way.

They didn't.

They debated on using Jason's personal locater beacon to get some help but decided against is as they knew that I would get a phone call verifying Jason's whereabouts and they didn't want me to worry.

When they finally reached their cars they drove to the sheriff's office and didn't find anyone there.
They next drove to the county jail and an officer there called the search and rescue team.
By this time it was nearing 11:00 at night and because there was nothing they could do in the dark, Jason and his friends got a hotel room for the night.

They didn't call their wives because they didn't have any real news about the lost hiker, and they didn't want their wives to worry.

Unknown to Jason was the fact that I was worrying.
I always worry when Jason leaves, especially when I don't have any contact with him.
It would seem my husband is fond of taking the road less traveled so to speak, and although he is extremely confident in his capabilities, I worry.

Friday night as I was getting ready for bed I had an overwhelming feeling that I needed to pray for Jason and his friends.
The feeling was strong enough that I started to cry.
I was certain that I would be getting a phone call telling me that Jason had been hurt or worse, and I prayed that entire night.

Saturday morning the search and rescue helicopter met Jason and the guys and started its search.
It flew around for two hours without seeing anyone.
The pilot landed the helicopter and the group was planning their next move when the lost hiker appeared on the trail.
He was uninjured and reluctant to admit that he had been lost.

The guys celebrated by going out for Mexican food before heading home.
The others made a pact not to tell their wives but thankfully as soon as Jason was home he told me what had happened.

We both got emotional as I told him of the feelings I had had about needing to pray for them.

I'm so grateful that this trip ended well.
If Jason didn't love backpacking so much, I would consider asking him to not do this again in the future.
But he will.
And I will worry.
And I'll always hug him a little tighter when he comes home.

Monday, September 15, 2014

I've Probably Never Really Talked About It

As I was looking through Facebook last night I came upon a link to a foundation set up in support of the 22q11 deletion syndrome or DiGeorge Syndrome ... the syndrome that Emily has.

I went to the webpage and read some of the profiles of the kids with the syndrome and was reminded quickly of why I am not part of any of the support groups.
Emily is three and I still have a hard time emotionally when it comes to her syndrome.

There are close to 150 different ways that her syndrome can affect her...and it can affect every part of her body.

Almost every single thing that Emily struggles with on a daily basis can be blamed on her syndrome.

Here's a list of the main symptoms:

  • 69 percent have palatal abnormalities (such as cleft lip and/or palate)
  • 30 percent have feeding difficulties
  • 80 percent have conotruncal heart defects (i.e., tetralogy of Fallot, interrupted aortic arch, ventricular septal defects, vascular rings)
  • 40 percent have hearing loss or abnormal ear exams
  • 30 percent have genitourinary anomalies (absent or malformed kidney)
  • 60 percent have hypocalcemia (low blood calcium levels)
  • 40 percent have microcephaly (small head)
  • 40 percent have mental retardation (usually borderline to mild)
  • IQs are generally in the 70 to 90 range
  • 33 percent of adults have psychiatric disorders (i.e., schizophrenia, bipolar disorder)
  • 2 percent have severe immunologic dysfunction (an immune system which does not work properly due to abnormal T-cells, causing frequent infections)
Emily has palatal abnormalities, feeding difficulties, two different heart defects, issues with her ears/hearing, low calcium levels, and has had a weak immune system. She has other issues too, that are not on this particular list.  As for the rest on this list...only time will tell.

* * *

I'm not even sure why I'm sharing this with you...maybe it's my own way of trying to accept that this is real and it's hard, and it's likely always going to be hard.

Maybe it's to point out that Emily handles her challenges far better than I handle her challenges.

Or maybe it's to remind myself to go be a little more be a little kinder...not to Emily but to myself.

It's a constant battle I deal with: I'm not doing enough to get her to eat, I'm obviously not disciplining her the right way because if I were she would not feel the need to hit her syringe of food out of our hands 8 out of the 10 times we feed her, I'm not working with her enough at home on her therapies...

The list goes on and on.

The reality is that Emily came to this world holding a bag filled with difficulties that would last her entire life ... and those difficulties have nothing to do with what I see as a lack on my part.  They're just part of who Em is.

I should print that last sentence in bold ink and hang it on my bathroom mirror.

* * *

Listen, I didn't just write all of that for you to validate me ... I really didn't ...
But next time you see a mom you feel like judging because her child isn't buckled properly in the grocery cart, or because her child is behaving like a crazy person, or because her child threw up the minute she got too much water in her mouth or because her house is a disaster ...  or whatever it is ... just stop and realize that they probably have more in their own bag of difficulties that we give them credit for.

* * *

And now I'm going to go and soak in a tub because my knees hurt because I knelt on a roof for two hours tonight pounding nails into tar paper because it's going to rain on Thursday and I love my brother and sister-in-law and don't want their house to be filled with water.

Monday, September 1, 2014

An Update on All Things Emily


Our girl started preschool last week.
I'm not sure I ever even mentioned that she was going to preschool.

It was an emotional day.
Not for Emily but for me.
I cried the entire three hours she was at school.

She loved it.
She's only been twice but whenever we mention the word school she smiles such a big smile and nods her head yes over and over again.

She will benefit from the social interaction with the other kids, and as a bonus she qualified for one on one speech therapy during the time that she's in class.

When I picked her up on Friday her teacher asked me if Emily had ever tried chocolate milk.
I laughed a little bit and said no.

"Well she tried it today," the teacher said with a smile.
She didn't like it and she wouldn't take more than one sip but it's more than I've ever been able to accomplish.

Lately, Emily loves to have a portion of whatever we are eating on her own plate.
She carries it around with her and every few minutes she will smell it.
It's kind of adorable.

While we're on the subject of Emily I'll give you a quick rundown...

We recently met with her cardiologist.
They did an EKG and an echocardiogram.
Her echo showed that her heart is enlarging at a faster pace than the cardiologist expected at this point.
He's not overly concerned though, and we have six months before we'll take her back for another MRI of her heart.

We are meeting with a new feeding therapist.
After one meeting with her I knew that if we had been meeting with her all along Emily would be eating by now.
We actually saw her once when Emily was a baby, and I was impressed with her then, but the day after that initial appointment Emily was rushed to the hospital in an ambulance and spent the next three months there, and was grounded from drinking her bottle for what would be the next six or seven months.

After that, this therapist's name remained in the back of my mind and whenever I would mention her to our other feeding therapists who came to the house they told me that she wouldn't do anything more than they were.

They were wrong.
And initially I was upset that I didn't make more of an effort to contact this other therapist, regardless of what I was told about the therapy we were receiving at the time.
It does no good to be upset; instead I'll focus on gratitude that we are seeing her now.

This new therapist suggested that we meet with an occupational therapist to have Emily evaluated for Sensory Processing Disorder.
Again, we have been meeting with occupational therapists for Em's whole life, and never once did any of them suggest that Em had SPD.
I had her evaluated last week, and she loved the tests..

At the end of the hour long evaluation the therapist told me that Em didn't need least not from him.
The only thing she has issues with really, is getting her hands messy and he feels that we can accomplish more at home than he can.
So it looks like we will be playing with pudding and shaving cream and other equally messy things.
Feel free to join us.

What else?

We met with a physical therapist and an orthotist (I asked the man what he was called because for the life of me I couldn't come up with it) because of concerns we've had with Em's feet.
Her heels and ankles turn in pretty badly and make it difficult at times for Em to balance.  And if left untreated, she would eventually have problems with her hips.

She was fitted for some braces and we got those last week.  She will likely need to wear them for a year or two, but thankfully they don't bother her, and we are amazed at the difference in how she walks when she has them on.

One of these days I'll see if I can get her to hold still long enough to get a picture of them.

Finally, we recently changed Emily's formula to something that is a little bit more age appropriate.
We are always really hesitant to mess with formula because of how sensitive Em's tummy is, but this has been our easiest transition.
She tolerates this formula better than she has any of the others, and she seems to have less reflux.

We meet with her GI doctor next month and will discuss the pros and cons of adding blended foods into her diet.
We know it would be a lot harder to track her calories that way but we would like to know that her tummy can tolerate food, so we may make the effort and start a blended diet slowly.

To be honest, right now I'm not sure that we'll ever get to a point where Emily will eat.

Last night Emily was playing with her cousins and got a little bit of dirt in her mouth.
She immediately gagged and threw up and then just cried.
If anything, it will be an incredibly long uphill battle.

It seems that more than ever, my life is filled with Emily's appointments, and now that we've added dropping off and picking up from school a couple of times a calendar fills up quickly.

I feel like I've got to start scheduling in things like laundry and cleaning the grout.  Because cleaning the grout is important.

I have a lot of people question me about my blog ... why I don't write ... or when am I going to update...

I'll try harder, I really will.

Thanks as always, for checking in on us.