IVIG Round SEVEN
We have gone eight weeks since Hunter's last IVIG. When I scheduled at the last appointment, I remember thinking 56 days was a long time to go without another infusion. I wondered if we would sustain the results we were seeing with the monthly IVIG's. I was worried that school would start, and we would be dealing with regression at the same time as anxiety of starting a new program.
Today, I walked into the CCBD center with light feet.
We have had a great- wait, extraordinary, last eight weeks. After his summer regression due to Paige's strep infection, I was hesitant to even complete round six of IVIG. I didn't think it was working.
After the antibiotic we gave (due to our belief that he had an acute infection), we saw a little relief. The "how dare you's" had decreased a bit, but we didn't get a total turn around until his next round of IVIG.
I honestly think the last seven weeks (not counting the first week) have been the best seven weeks thus far. At the end of the day, instead of collapsing from exhaustion due to non-compliance and behavioral struggles, I collapse with a smile from all of the activities we were able to participate in due to his turn around. The start of school was frightening, filled with anxiety and hesitation due to the transition and the likelihood of elopement and non-compliance.
But now, four weeks into "big" school, he has phenomenal teachers that truly love him and celebrate the small victories with smiles on their faces and tears in their eyes. When I hugged his special ed teacher a couple of weeks ago, I could tell she was just as emotional about the good day as I was.
I can't tell you how much it means to us to have teachers that share in our joys and believe in our mission of recovery.
So today, as Hunter sits in this hospital room instead of in his REGULAR ED classroom, I know that we have most definitely made the best decisions.
We have trusted, believed in His plan, and have followed our hearts and our gut instinct.
Hunter's anxiety kicked in about three days ago, right at bedtime ("I don't want to get the needle in!") The IV insertion today was the worst yet- he tried to run out of the room as the nurse rolled her cart in, and screamed, kicked, hit, yelled the naughty Toy Story line ("shut up"- his new repetitive phrase)...but after about twenty of the longest minutes they were able to get it in and flushed. I could feel his little heartbeat going super fast and as the tears fell I couldn't help but feel guilty for putting him through this procedure.
But looking back over the past seven months, we know it is the best course. And once the twenty minutes are finished, we can pretty much sail through the rest of the week.
Child Life Specialist attempting to calm him.......and after the storm
We pray that this week goes smoothly and he tolerates the immunoglobulin. I know in my heart that we have been guided throughout this journey and this is just another step. This kid will rock round seven!
Here's a few pictures from the past week/weekend...
Special Friends day...well, that special friend was Mommy today. :) He had a hard time; told me from the moment I walked in the lunchroom that he didn't want me to go and he wanted to go home with me. But after his smart classroom teacher told us to go down early to check out the Froggy books, he calmed down.
My other special visitee- and she was Longhorn of the Week!
Peyton had his first soccer game this weekend- and since Coach Daddy was gone, another dad and I filled in...it's finally Peyton's turn to play instead of watch!
And finally, flowers from our backyard. Blooming brightly to demonstrate how "things are beautiful within their own time."
Today, I walked into the CCBD center with light feet.
We have had a great- wait, extraordinary, last eight weeks. After his summer regression due to Paige's strep infection, I was hesitant to even complete round six of IVIG. I didn't think it was working.
After the antibiotic we gave (due to our belief that he had an acute infection), we saw a little relief. The "how dare you's" had decreased a bit, but we didn't get a total turn around until his next round of IVIG.
I honestly think the last seven weeks (not counting the first week) have been the best seven weeks thus far. At the end of the day, instead of collapsing from exhaustion due to non-compliance and behavioral struggles, I collapse with a smile from all of the activities we were able to participate in due to his turn around. The start of school was frightening, filled with anxiety and hesitation due to the transition and the likelihood of elopement and non-compliance.
But now, four weeks into "big" school, he has phenomenal teachers that truly love him and celebrate the small victories with smiles on their faces and tears in their eyes. When I hugged his special ed teacher a couple of weeks ago, I could tell she was just as emotional about the good day as I was.
I can't tell you how much it means to us to have teachers that share in our joys and believe in our mission of recovery.
So today, as Hunter sits in this hospital room instead of in his REGULAR ED classroom, I know that we have most definitely made the best decisions.
We have trusted, believed in His plan, and have followed our hearts and our gut instinct.
Hunter's anxiety kicked in about three days ago, right at bedtime ("I don't want to get the needle in!") The IV insertion today was the worst yet- he tried to run out of the room as the nurse rolled her cart in, and screamed, kicked, hit, yelled the naughty Toy Story line ("shut up"- his new repetitive phrase)...but after about twenty of the longest minutes they were able to get it in and flushed. I could feel his little heartbeat going super fast and as the tears fell I couldn't help but feel guilty for putting him through this procedure.
But looking back over the past seven months, we know it is the best course. And once the twenty minutes are finished, we can pretty much sail through the rest of the week.
Child Life Specialist attempting to calm him.......and after the storm
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| dancing to the video #can'tsitstillinahospitalroom |
Here's a few pictures from the past week/weekend...
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| His sweet teacher sent me a selfie because he told her he would miss her this week |
Peyton had his first soccer game this weekend- and since Coach Daddy was gone, another dad and I filled in...it's finally Peyton's turn to play instead of watch!
And finally, flowers from our backyard. Blooming brightly to demonstrate how "things are beautiful within their own time."
Thank you, friends and family, for the extra prayers this week and the support. Continuing to trust. :)
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