taking a step backwards
I had a vivid dream last night- I woke up this morning and checked my hand, thinking I would see an IV...I dreamt that I had IVIG. The circumstances were not ideal...the "bag" had broken and they didn't want to waste it on Hunter, so they set me up for IVIG (not quite sure why I went through it, too). I kept asking the nurse questions, wondering why I needed it, how I was going to pay for it, explained how my son Hunter needed it more than I did...and the nurse finally said, "Mamm...your son was approved."
I remember waking to Hunter coming in our room, which stopped the dream as he was getting his IV. It felt so real...I had to tell myself several times today that it was a dream.
Our insurance company has until November 2nd to make a decision on our third and final appeal..so we have until this Friday to hear their decision. I have been second guessing it all, thinking even if we were approved, why would we mess with him when he was doing so well? We are down to an aide 9 hours per week, instead of the 35 hours he was receiving at the beginning of the school year. He has made friends, participated in so many activities that I never thought possible, and has been generally compliant at home.
Until today...sometimes I think I need these smack-in-the-face type days to remind me 1) how far we have come or 2) how far we have to go.
Saturday I commented to Peter, after a trying day with ipad obsessions and phone hijacking attempts, that it seemed like we were having to keep Hunter involved in activity or out of the house if we wanted to avoid the electronics. We took him on several errands with each of us, due to the fact that he was obsessing about watching a movie, playing the Wii (which we had to take out again- he hit the TV last week), or using the ipad/tablet. We went to an expo this weekend and sampled many of the treats and products available. Hunter was agitated from the get-go-- not sure if it was the crowds, the lights, or what...but he wanted out of there. We quickly made our way through the vendors and ended up at the craft table for him to calm down.
As soon as we got home, he searched for the tablet, turned daddy's football game off, and pulled my phone off the charger. I took the kids outside to ride bikes and play our new fave, kickball, and the neighbors all came out to join us. Hunter would not stay outside- he kept running in, slamming the door, screaming "I WANT THE IPAD!" After dinner, we had skyped with our uncle to wish a happy birthday, and the ipad obsession started again. He slammed several doors, screamed at the top of his lungs, and basically didn't calm down until he was in his bed.
And then the PTSD (post-traumatic stress disorder) sunk in...please, dear God, tell me he doesn't have strep.
The boys both have runny noses, which started this past week. Paige has been coughing. Illnesses are all around...and I am just praying that we are healthy and we have nothing more than the common cold.
Of course, we have no fever, no clinical symptoms of strep. But this child never has a fever response. He doesn't clinically show strep. So how can I be so afraid of this stupid illness?
Because his behavior responds.
If he wakes up in the morning and grabs my phone, the ipad, flips on the TV, we are headed to the doctor for a strep test. We haven't had a day like today in a very long time, and I AM SPENT.
I forgot how hard this life was to live with a child in a flare. We've been sailing along so nicely...so lets hope today was a fluke.
Here are a few pictures from the weekend activities...
We were "boo-ed" by our WI cousins, so we decided to boo our neighbors- sneaky in the dark with treats for them. Paige decided she had to wear the superhero cape to make it official.
Saturday night movie/game night. Kids were bathed early and in their jammies to play a little Old Maid.
Pumpkin carving time! And that, my friends, is my Luke Duke getting ready to slice that bad boy.
Say a little prayer this week for the answer we are needing. And more importantly, for good health.
I remember waking to Hunter coming in our room, which stopped the dream as he was getting his IV. It felt so real...I had to tell myself several times today that it was a dream.
Our insurance company has until November 2nd to make a decision on our third and final appeal..so we have until this Friday to hear their decision. I have been second guessing it all, thinking even if we were approved, why would we mess with him when he was doing so well? We are down to an aide 9 hours per week, instead of the 35 hours he was receiving at the beginning of the school year. He has made friends, participated in so many activities that I never thought possible, and has been generally compliant at home.
Until today...sometimes I think I need these smack-in-the-face type days to remind me 1) how far we have come or 2) how far we have to go.
Saturday I commented to Peter, after a trying day with ipad obsessions and phone hijacking attempts, that it seemed like we were having to keep Hunter involved in activity or out of the house if we wanted to avoid the electronics. We took him on several errands with each of us, due to the fact that he was obsessing about watching a movie, playing the Wii (which we had to take out again- he hit the TV last week), or using the ipad/tablet. We went to an expo this weekend and sampled many of the treats and products available. Hunter was agitated from the get-go-- not sure if it was the crowds, the lights, or what...but he wanted out of there. We quickly made our way through the vendors and ended up at the craft table for him to calm down.
As soon as we got home, he searched for the tablet, turned daddy's football game off, and pulled my phone off the charger. I took the kids outside to ride bikes and play our new fave, kickball, and the neighbors all came out to join us. Hunter would not stay outside- he kept running in, slamming the door, screaming "I WANT THE IPAD!" After dinner, we had skyped with our uncle to wish a happy birthday, and the ipad obsession started again. He slammed several doors, screamed at the top of his lungs, and basically didn't calm down until he was in his bed.
And then the PTSD (post-traumatic stress disorder) sunk in...please, dear God, tell me he doesn't have strep.
The boys both have runny noses, which started this past week. Paige has been coughing. Illnesses are all around...and I am just praying that we are healthy and we have nothing more than the common cold.
Of course, we have no fever, no clinical symptoms of strep. But this child never has a fever response. He doesn't clinically show strep. So how can I be so afraid of this stupid illness?
Because his behavior responds.
If he wakes up in the morning and grabs my phone, the ipad, flips on the TV, we are headed to the doctor for a strep test. We haven't had a day like today in a very long time, and I AM SPENT.
I forgot how hard this life was to live with a child in a flare. We've been sailing along so nicely...so lets hope today was a fluke.
Here are a few pictures from the weekend activities...
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| Paige's playdate, doing "school" with the boys |
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| this totally cracked me up,..she was trying to teach peyton addition |
Soccer games were great this weekend and last. Paige scored three goals last weekend, two goals this past game. She is playing exceptionally well this year, even though the girls have to play with a goalie.
Our little Lightning McQueen obsession. I don't even think this was all of them. And believe me, Hunter will tell and show you the difference of each.
Fun with food and gigantic grapes.
I totally did not set up this picture but it CRACKS ME UP!! Look at sneaky little Peyton pulling her hair!
More fun with food. Orange/celery pumpkins for Peyton's class treat.
So Peter brought home this little ninja costume from Beijing and if ever the day seems stressful or we need a little comic relief, he dressed Peyton in this get-up and sends him over to see me. He even did the kung fu moves this weekend.
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| Poor daddy ended with the old maid. haha! |
Say a little prayer this week for the answer we are needing. And more importantly, for good health.
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