It's been awhile since I've blogged, but I finally have a moment to myself while the baby is napping. He's teething, and had just cut his first tooth. It's sharp when he uses my fingers as a chew toy.
His surgery has been scheduled for the 7th of September, only a little under two weeks away. I keep telling Sean not to worry, that the baby will be okay, because he is seriously stressing out about it. So much so that I never get a chance to just let out my worries and frustrations anymore.
I am getting so angry lately. Angry at the Powers that Be that seems to think I can handle a disabled child and a disabled husband. Angry that I never get a chance to be myself anymore. I've had to give up most of my pastimes, most of my hobbies, and I feel like I am in this place that I seem to have lost my identity. Yeah, I know, sometimes it's a part of mommyhood, but it seems like I am the one who is giving up everything while Sean still gets to act like...well, like he has no responsibilities.
Yes, I know, he's disabled and can't do too much to help physically; but you'd think he could at least take care of the baby while sitting on his ass all day in the damn recliner playing video games. He can give the baby his bottles or his breathing treatments while I get some school work or house work done, but NO. I'm the one who feeds and tends the baby, I'm the one who plays with him on the floor for tummy time, I'm the one who gets up at night with the baby when he's in pain from teething or is hungry; I'm the one who seems to be doing it all. and if I want to have just one day a week to sleep in...well, heaven forbid! You'd think I was asking for a million bucks. Or heaven forbid I ask for some time alone in the back bedroom while he has the baby out in the living room. I'm getting tired. tired of being the one doing all the work and all of the budgeting and getting no support.
AAARRRGH!!!!!!!!!!!!
Ticker Tape Timer!
Tuesday, August 25, 2009
Wednesday, April 8, 2009
Surgery will happen...
Howdy ya'll
It looks like surgery is going to happen! He's going to be getting an MRI done in August (likely sedation will happen, since he squirms around A LOT), and after the appointment to talk about it and discuss how and what will happen, surgery will likely happen in September.
What Jonathan has is called Spina Bifida Occulta, also known as hidden spina bifida. We still don't know how it happened (his genetics appointment isn't until July, and it is likely genetic from what the neurosurgeon said), but we do know now that it is the least troublesome form of it and easiest to correct. The fact that he has excellent movement in his legs and no problems with his bladder or bowels is a great sign, but the surgery is needed to prevent problems from appearing later as it is degenerative; as he grows the nerve endings and the tethering is stretched and damaged, which then affects his legs, bowels and bladder. He had his baseline test on his bladder (peed on the resident and the urologist! Who knew that catheters weren't fun??? LOL), and things look good from their end right now; his bladder is a little small, but they aren't sure if that is because he is small or if it is because of the tethered cord problems.
He also had his first date yesterday! We met up with another NICU graduate, Aimee and her daughter Sayde, and had lunch to celebrate her anniversary and birthday (Aimee's). As Sean puts it, they shared a bottle and went to bed. It was great seeing them, and it's going to be a bummer when they head back to their base in Texas in May when Dustin comes back from Iraq (she's been staying with her family in Fort Edward/Glens Falls while he deployed). Thank goodness for Facebook and technology!
After his stressful day yesterday he is snoozing today, but won't snooze anywhere but on me (makes typing comfortably interesting).
Thanks for the the good thoughts, prayers, and wishes! He's a little fighter (LOL, just like his mommy, so it's been said...), and he'll be fine. Just have to take things a day at a time. :-)
It looks like surgery is going to happen! He's going to be getting an MRI done in August (likely sedation will happen, since he squirms around A LOT), and after the appointment to talk about it and discuss how and what will happen, surgery will likely happen in September.
What Jonathan has is called Spina Bifida Occulta, also known as hidden spina bifida. We still don't know how it happened (his genetics appointment isn't until July, and it is likely genetic from what the neurosurgeon said), but we do know now that it is the least troublesome form of it and easiest to correct. The fact that he has excellent movement in his legs and no problems with his bladder or bowels is a great sign, but the surgery is needed to prevent problems from appearing later as it is degenerative; as he grows the nerve endings and the tethering is stretched and damaged, which then affects his legs, bowels and bladder. He had his baseline test on his bladder (peed on the resident and the urologist! Who knew that catheters weren't fun??? LOL), and things look good from their end right now; his bladder is a little small, but they aren't sure if that is because he is small or if it is because of the tethered cord problems.
He also had his first date yesterday! We met up with another NICU graduate, Aimee and her daughter Sayde, and had lunch to celebrate her anniversary and birthday (Aimee's). As Sean puts it, they shared a bottle and went to bed. It was great seeing them, and it's going to be a bummer when they head back to their base in Texas in May when Dustin comes back from Iraq (she's been staying with her family in Fort Edward/Glens Falls while he deployed). Thank goodness for Facebook and technology!
After his stressful day yesterday he is snoozing today, but won't snooze anywhere but on me (makes typing comfortably interesting).
Thanks for the the good thoughts, prayers, and wishes! He's a little fighter (LOL, just like his mommy, so it's been said...), and he'll be fine. Just have to take things a day at a time. :-)
Thursday, April 2, 2009
The meaning of "Tommy-Gun Johnny"...
There is a story behind the blog title:
Carol came up to visit after he came home, and we were talking about signing him up with a Facebook page, since all of the Adwoffers and everyone loves seeing info on him. She said we would have to sign him into MobWars and we could give him a tough guy nickname, and thus "Tommy-gun Johnny" was born.
Since the whole JJ nickname doesn't seem to fit him, we may have to see if this one works!
Carol came up to visit after he came home, and we were talking about signing him up with a Facebook page, since all of the Adwoffers and everyone loves seeing info on him. She said we would have to sign him into MobWars and we could give him a tough guy nickname, and thus "Tommy-gun Johnny" was born.
Since the whole JJ nickname doesn't seem to fit him, we may have to see if this one works!
The joys of parenthood
...and yes, I really mean joys.
While I worry about Jonathan and how things will work out (a little), I also am enjoying my time with him. Even with the lack of unbroken sleep, each day I fall a little more in love with my son. Each day brings a new little accomplishment or joy that even BJ smiles at. He's smiling more, and he holds his head up REALLY well. He is scooting about with his legs when lying on Sean or I (and four inches on the floor when he did his tummy time yesterday!), and he recognizes us. As soon as we pick him up when he's crying (which isn't often, by the way), he calms down with Sean and I (and Mary, too). He's sleeping more at night (but not all the way through yet), and he's so alert and focusing on stuff. Just this morning, Sean had him on his chest while playing his gameboy and Jonathan turned around into a little ball like a cat and looked at the gameboy screen with Sean. I so wish I had caught a picture! He grabs onto stuff and puts his binky in his mouth by himself (so much easier on me!).
I just am enjoying seeing him explore his new little world!
While I worry about Jonathan and how things will work out (a little), I also am enjoying my time with him. Even with the lack of unbroken sleep, each day I fall a little more in love with my son. Each day brings a new little accomplishment or joy that even BJ smiles at. He's smiling more, and he holds his head up REALLY well. He is scooting about with his legs when lying on Sean or I (and four inches on the floor when he did his tummy time yesterday!), and he recognizes us. As soon as we pick him up when he's crying (which isn't often, by the way), he calms down with Sean and I (and Mary, too). He's sleeping more at night (but not all the way through yet), and he's so alert and focusing on stuff. Just this morning, Sean had him on his chest while playing his gameboy and Jonathan turned around into a little ball like a cat and looked at the gameboy screen with Sean. I so wish I had caught a picture! He grabs onto stuff and puts his binky in his mouth by himself (so much easier on me!).
I just am enjoying seeing him explore his new little world!
Sunday, March 29, 2009
Jonathan's Spinal Issues
http://www.answers.com/topic/tethered-spinal-cord-syndrome
This is the issue he has with his back. We'll know after the 7th whether/when he'll be getting surgery.
This is the issue he has with his back. We'll know after the 7th whether/when he'll be getting surgery.
Starting a new life...
Fate is a funny thing; when Jonathan was born I was worried that perhaps it was way too soon and wondered why this could have happened to us. As it turned out, it is a good thing he came early; he was able to get the medical care he needed and found out he has some anomalies that need further treatment. Whether or not those issues would have been discovered if he was full term we do not know; his pediatrician is wonderful and would likely have caught them, but the fact of the matter is he got the referrals and doctors he needed to look at him while he was in the NICU and saved us a lot of headache. While he may need surgery to correct some of the issues, overall he is a growing and otherwise healthy boy who is now flourishing at home.
While I do not think I would wish this experience on anyone, I do think that this experience reinforces the fact that one cannot change what they cannot control, and that fate decides when things are going to happen and why they happen when they do. The only things a person can do are roll with the punches and take each day and each situation as it happens. There is no point in worrying about what may happen, since there is no way for one to change how things are going to turn out in any case. It is better to enjoy each day with our loved ones, no matter what troubles may be coming, and focus on the good that is happening rather than the negatives that could happen.
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