Monday, October 12, 2015

The Truth Behind the Pictures


I normally don't create posts like this....I am not a negative person.  I always try to look at the best in every situation because if I don't our lives will be engulfed in negativity.  Our daily challenges will take over our happiness.  Our family is happy!  I want our challenges to be just that....a challenge.  Something we can overcome, something we can get past and move on together.  But sometimes the truth is there.  There are many times our family events "look" fantastic.  It appears we had a fantastic time.  Truth is...we probably did, but we faced many challenges during that event too.  I just chose to focus on the fun and happiness that we encountered during that event and share it with others. 

We have lots of hidden challenges in our family.  We have gotten so good at hiding our challenges from other people that even in public while a challenge is taking place, people have no idea.  Many of you don't know that when Macy was struggling with increased mucus following the removal of her trach and her unidentified asthma at the time, that I used to carry a puke cup in my purse.  Yep, a puke cup.  We wanted more than anything to be a "normal" family who could go out to dinner, that we took a chance every time we did.  She often got choked up during eating, and would either have to vomit into the cup or spit food out of her mouth during the meal into the cup.  We always asked for a booth so we could be semi-hidden from others and no one would notice.  To this day, we still ask for a booth for two reasons.1. it is just natural at this point, and 2. because when she is sick with a cold, we still sometimes face this challenge.

Well, our "normal" family day yesterday was another challenge.  Here are some pictures that I took from our day.  We went to the pumpkin patch! 














What you can't see from the pictures is that Macy has been struggling with respiratory issues for 4 weeks.  After 3 weeks we took her to the doctor.  She was started on an antibiotic, and we were told to continue around the clock nebulizer treatments.  By last Wednesday, after being on antibiotics for 6 days, she wasn't much better.  We took her back to the doctor and found out it was pneumonia, and they changed her to another antibiotic.  I would love to say we see immediate changes, but every illness is a huge challenge for Macy to overcome.  We have seen improvements slowly, and are still doing around the clock nebs.  We leave soon for Florida and wanted to get our annual pumpkin patch visit in  before we left.  We knew it wouldn't require Macy to do much physically since they take you to the patch on a wagon ride. 

So we gave her a nebulizer treatment before we left and headed on our way.  When we got there, the cool air started getting to her.  We hopped on the wagon ride.....it was just our family since we got there right when they opened.  We did that on purpose to avoid the crowd.  We took a couple of pictures on the wagon ride, and then it started.  Her coughing started getting worse.  I sat next to her and patted her back.  I tried to position myself in a way that might block the wind.  Finally I suggested that she put the hole of her sleeve up to her mouth and breath inside since it would be warmer air.  That is when it happened, she puked.  Half of the puke went down her sleeve, and then she pulled her mouth away from her sleeve and half went on the leg of her pants, part of the seat, and the floor of the wagon.  I know this is nasty, but once she put her sleeve down from her face, some was dripping out of her sleeve.  It was not chunky food, it was watery and snotty.  I know this is really gross, but it is our reality.  It was too cold to take her sweatshirt/jacket off, so I told her that I would "fix" it when we got to the patch.  I took my hand and brushed the watery puke off the seat. Don't worry I sanitized. 

When we got to the patch I feared the nice man would jump off the tractor and try to help us off, and either touch Macy's sleeve or see if hanging from her sleeve and on her pants.  So Macy and I hustled off the wagon.  The man said he was going to phone back up to the orchard to see if more people were waiting.  If no one was waiting up there, he would just wait for us while we picked.  I prayed that more people were waiting so I could "fix" our situation. 

Fortunately more people were waiting and he took off to go get them.  I took Macy sweatshirt, and crossed the field to an area that was somewhat grassy.  I had to turn her sleeve inside out.  It was full of snot.  Yuck!  I had it all over my fingers.  I was so happy that it was early enough in the morning that there was still lots of dew on the grass.  So I rubbed and rubbed her sleeve in the grass.  The outcome was a snotless, wet, muddy sleeve.  I rolled up both sleeves (thankfully most sleeves are too long on her anyway), and gave her the jacket back.  She was very hesitant to wear it, but she had no choice.  I reassured her that we could go straight home to get her a new jacket after we left the pumpkin patch. 

It was not over though, we still had to worry about the ride back to the orchard on the wagon.  Fortunately we made it back with no incident.  Poor Macy!  Regardless of the challenge we faced, I think she still had a good time.  So there is often a truth behind the pictures that I often don't share.  We are not a fake happy family....we are truly a very happy family.  We have just chosen to look at each challenge in our lives positively.  I honestly thanked The Lord that we were able to take our children to the pumpkin patch.  There are many families that can't afford to do things like that, or families who have a child too sick to do things like that.  We feel very fortunate, despite our challenges.  This is just our lives....challenges, happiness, and all!

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Thursday, October 1, 2015

It's Time!


I would love to say we heard back from our insurance company, and we were approved for Macy's injections, but that is not the case.  We have no word from them yet.  Fortunately the medical company that we are getting her growth hormone injections from is providing the injections free until we hear from our insurance company, even if we get a denial and have to go through the appeal process.  I got word on Tuesday, and the medication arrived on Wednesday.  Today (Thursday) the nurse called and she will be out on Saturday morning to train Jeremy and me for giving the injections.  Macy will be getting these injections at home, once a day. 

She has been too cute, asking me lots of questions.  She said, "It's going to be so good to finally grow and start to be more like the rest of the kids!"  Then tonight she said, "So, am I going to get 1 shot, grow some, another shot, grow some more?"  I said, "Well, it's going to take a little time Macy."  She is just so sweet! 

So our house now looks like a doctor's office....if it didn't truly look like that already.  I went ahead and cleared out a drawer for all of her new alcohol prep pads and needles. 


In regards to any liver news.....we haven't heard a word from the transplant doctor in Chicago.  If you know me, I am not a very patient person when it comes to moving things along for Macy.  I bet it will shock many of you to know that I have held back my urge to call them myself.  Now that I am writing this, I am seriously thinking I might just call to put a bug in their ears tomorrow, lol.  We would like to get some things moving along.  My goal is to get some testing accomplished in the next few months, but wait until after Macy's wish trip for any major surgery. 

Thanks for checking in on us!  We will keep you updated!!!

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