where do we start?

Isaac’s string of luck ran out last week……. he got sick again. We thought it was an easy to fix sick and started him on IV antibiotics Friday night. Within a few minutes of those antibiotics ending he started shivering – scary, violent shivering. He was hard to rouse, and it reminded me of the night he became septic in Minnesota all those years ago.
We got him to the hospital and they at first diagnosed a febrile seizure. They cultured everything and put in an IV, it took 4 attempts, 4 heartbreaking attempts. Isaac cried and thrashed and begged us to stop. Everything about it sucked.
On Saturday they pulled his PICC line out and decided to get more blood on Sunday – more crying and begging. On Monday his IV blew, a new one had to go in. As I held him down in the treatment room, and he begged for “no more” I wondered how much of this any one person can take? At what point does Isaac turn on us? When does he stop coming to us to help him when the things we do just seem to hurt? What’s making this harder is not knowing, we’re still not sure what we’re treating.
The PICC line they pulled out grew yeast, and that can be treated with an oral drug or IV – they are using the IV right now just because he has it. His blood cultures (4 of them now!) are confusing – one is growing something, others are not. We are waiting on the latest to see what it grows. At this point Isaac is happy, not feverish and active. And we are keeping him contained in a hospital room, he asks several times a day to “go home”. He tells me everyone he misses by name, and it sucks.
Right now I’m scared that his blood will grow something, and kind of scared it won’t. If it doesn’t he could have gone home on Monday – we would have put in an extra IV and done two extra blood draws for nothing. If it grows we need to somehow get a line in him that he can come home with for more IV drugs.
I think it’s just turning into one of those days…. one of those “why Isaac?” days. We’re hoping to know more tomorrow and really hoping to have him home by Thursday. When we get him home we will find a reason to enjoy every moment here for a while…..

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Nemo!

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Isaac got out this week and picked out a brand new pet fish – he has finally settled on Nemo as his name 🙂 The setting up of the bowl was very exciting, and although it’s only been 24 hours, Nemo seems to be a good addition to Isaac’s life. He said goodnight to him last night, and woke up with a “good morning Nemo”. He checks on him a lot, and reports to us on Nemo’s activities throughout the day 🙂
In medical news…. we were waiting to hear from Children’s Hospital in Philadelphia (CHOP) regarding whether or not they were interested in Isaac’s case. As we’ve said before, his right ribcage is completely fused and impeding his right lung’s ability to function fully. In time this will get worse. CHOP is among the best places to work on something like this, since the surgeon who invented the technique used to stretch the ribs works there.
It can take a while to hear back from CHOP, much less get your child in for a consultation….. after some hounding (who, me??) we got an appointment for August 19th for an evaluation. I am very excited, since they are amongst the best – but so nervous. This is MAJOR surgery, and it requires several trips a year to stretch the rods they place in the body. Along with this comes a major risk of infection. We have to do this for Isaac – we really feel this could make the difference in getting his trach out. Even if it doesn’t, Isaac deserves every chance we can give him to breathe!
As I type this, Isaac is conversing with me fully – he just typed his name and proudly announced “I spelled my name!”…. it doesn’t get much better than that 🙂

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revelations….

First and foremost – Isaac got his trip to Sesame Place this week, what an amazing day he had! He smiled from ear to ear the entire day. We managed to see 2 shows, ride a ton of rides (some twice!) and watch the parade that he has watched repeatedly on his Ipad night after night. He exuded JOY 🙂
Something we have dealt with at home for almost a year now is Isaac’s aggression towards his brother, Eli. It has gotten progressively worse, when we describe it the stories sound quite comical – but it is very serious. We have tried time outs, taking away treasures, lots of talking and a variety of behavior management techniques – to no avail.
We finally started taking Isaac to a behavior therapist, Miss Lora. She has worked great with him, and offered us great suggestions. Today she dug deep with him, and her breakthrough was what we suspected, but hearing it was tough.
Isaac was given the old feelings face chart. Lora asked him how he felt about all of his tubes and medical issues, he pointed to mad. She asked him how he felt about the fact that he has these tubes and nurses telling what to do and Eli doesn’t, he told her (in words) “I’m mad, mad, mad”….. heartbreaking. She kept digging and asked him if any other feelings describe him right now, he sad he is sad 🙁
It was hard to hear, we try to believe that all he has been through and continues to go through doesn’t impact him greatly, but it does. Of course he is mad and sad, WE are often mad and sad and it’s not happening directly to us. Just because he has this amazing smile, and incredible joy doesn’t mean he doesn’t feel what is happening to him.
I am happy that he is expressing this, and so appreciative of Lora. I’m sad that we haven’t fixed everything and even sadder that there is more to fix that will make him mad and sad again.
We have a plan to make things a little bit easier for him, allowing him to make more choices and maybe even getting him a small pet (more than likely a fish, as that is all the responsibility mama and daddy can handle!) to take care of – that is just his.
In the end we have to remind ourselves that Isaac has been through more in his 4 years than most people endure in a lifetime. He has come out strong and resilient, but he is still just a little boy who sometimes feels a little bit mad and sad about his circumstances……

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His voice :)

I sometimes find it hard to believe that Isaac didn’t really speak a year ago. Last summer we started speech therapy using a speaking program on his Ipad, and were amazed as we watched in his first few sessions as he composed multi word sentences. We were so very lucky to find a group of speech therapists who could see Isaac’s capabilities, and who knew there was a talker in there 🙂
Isaac’s ability to speak will always be amazing. For 18 months he made no sound, he didn’t cry with sound, he didn’t laugh with sound and he didn’t speak. To hear him talk now, and to understand him (most of the time!) is difficult to explain. Isaac’s voice is beautiful, and something he has fought so hard for. He is now speaking in sentences a lot of the time, and he is becoming quite a story teller.
When we ride in the car he insists on blasting his Fresh Beat Band CD, and he sings along every time! He knows the words to all of the songs, and often dances as he sings. I sometimes can’t wait to get in the car with him 🙂
We are heading to Sesame Place this weekend for some real fun, he has been telling everybody about it 🙂 It’s important to squeeze in fun whenever we can, as we never know what Isaac has coming at him.
We have sent his records to Children’s Hospital in Philadelphia to get their ideas about his fused right ribs and what we should do. We know that realistically this will require some major surgery, and possibly repeated surgeries – not something any of us like to think about. We are hopeful that there is a solution out there for Isaac that will make breathing easier and his quality of life even better.

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is it really that easy?

This week I have had the honor of attending Vacation Bible School with Isaac. Of course, no other kids have a mom escorting them – I was a little bit bitter about all of the happy parents dropping their kids off on Monday, gleefully heading out the door for 3 hours on their own. Then I started watching Isaac…
I realized, because I HAVE to stay with him I am experiencing more with him than most parents do. I watch him dance unabashedly in the aisles each time the band plays a song, I have gotten to know the wonderful older boy who has made Isaac his BFF this week and seen how beautiful some kids really are, I have seen a smile a mile wide as Isaac runs a relay race. I have seen it because I was “forced” to be with him this week.
Vacation Bible School is focused on “God sightings”, where do you see God? I am not a deeply religious person, I’m really not a religious person at all. I do believe I have had my own “God” sightings this week through my brave boy. I have seen his strength and resilience as he goes to VBS each night feeling not so great. I have seen this child dancing in the aisles, and leading the other kids in this endeavor. Isaac ran a relay this week with all his heart, he didn’t come in first – but he ran as hard as a trached, cruddy lunged kid can! His spirit is shining bright, and I am witnessing it each night. I think this is the point of VBS, I hope they would be proud of this mama for listening and getting it 🙂
At home his week, Isaac has started speaking in the most complete sentences we have ever heard! He seems almost inspired.
There may be no major connection here, but there might actually be. Whatever it is – we will enjoy it. I am sad to see the end of VBS tomorrow night, this time with Isaac has been so nice!

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