I am overwhelmed with emotion tonight as I sit here and think of all I have to be thankful for. It's been an amazing year. I've met so many new people. I've learned so many new things. I've lived and I've loved to the fullest.
I can't truly put into words how very thankful and grateful I am for each and every one of you.
For all of the workers: Thank you for doing your very best to save my son's life. You have not only taken care of my baby, but you've taken care of us as a family. Thank you for going above and beyond. For calling in to check on Joel on your day off. For treating my son with love and compassion, the way you would like your child to be treated. It has been a very fragile 8 1/2 months for us, and somehow you all knew what we needed to hear, when we needed to hear it. I love you.
For my friends and family: I have taken far more than I've given the past year. You've watched our kids when we were in the hospital. You've brought over food, or gifts, or sent up care packages, visited me when I needed another fighting spirit in my corner. YOU'VE PRAYED. Each and everytime I posted something asking for prayer or support, I was flooded with encouragement. And I thank you. Even when I couldn't reply back to messages, or return calls or texts....(which I still can't do very well,) please understand that I read every word. It means far more to me than I can even say. I hope someday I can repay you.
For my savior: Thank you. Thank you for saving my son. Thank you for turning such a horrible situation into one that I could absorb faith and knowledge from. For the toolbox I needed to maintain a healthy marriage. I've learned so much about your faithfulness and love for your children. You were with us the whole time, you never abandoned us. I love you.
Sunday, December 5, 2010
Friday, December 3, 2010
Hope.
Our first opinion on Joel's eyes was just that. An opinion. He said that Joel's eye or eyes would eventually not work well, we could do surgery, but that may not help either, and it was neurological, which the neurologist disagreed.... It was frustrating. And it made me feel up in a corner. What good does it do for the patient if you have two doctors disagreeing with each other, but no one is actively trying to solve the problem but the parent...who knows nothing about the eye or the brain?
I was referred to Dr. Baxtrom by a mommy friend. Her son goes there for vision therapy and has had miraculous results. I had/have no doubt that my son needs all therapies. He was sedated and on heavy narcotics for the first 3 months of his life. If he needs major physical therapy and occupational therapy, why wouldn't he need help with his eyes as well?
Baxtrom's opinion of Joel's eyes was much different than the first. He discontinued the eye patches. After a straight month of diligent patching, we'd seen zero improvement. He said that he's actually seen negative progress after patching in a case like Joel's. It wasn't that one eye was turning (strabismus, which is what the first doc said it was.) The problem with Joel's eyes is that they aren't working together. If an object appears in his right periferal vision, his left eye has a tendency to turn in anyway, and so his left eye is taking "lead" in a circumstance where the right eye should be turning outward to view the object, and vice-versa. Does that make sense?
There's no reason to patch either eye. They work fine on their own. It's working together that they need help on, which can be done. Did you hear me??? IT CAN BE DONE. Dr. Baxtrom said he has every reason to believe Joel has the potential to have "normal" eyes. No surgery. Just special glasses, and extra practice with lateral tracking.
So he's getting glasses :) Green rubber glasses. They'll get here in a couple of weeks, and the neat thing about them is that the inside of the lenses, (around the bridge of the nose) is hazy. So, in the circumstance I mentioned earlier, when his left eye wants to take lead, it won't be able to, because it won't be able to see through the haze. The right eye will be forced to do it's job.
So there it is. There's the news. It was a great afternoon in Federal Way, and the clinic was by the mall....which we stopped and did a little shopping. Early enough that there were no shoppers, we got to take Joel to a mall, safely, without the panic that someone would cough on him, or not be able to find a plug in with the holiday crowds. And he saw Santa :) I'll post a pic soon of that. It was classic.
I was referred to Dr. Baxtrom by a mommy friend. Her son goes there for vision therapy and has had miraculous results. I had/have no doubt that my son needs all therapies. He was sedated and on heavy narcotics for the first 3 months of his life. If he needs major physical therapy and occupational therapy, why wouldn't he need help with his eyes as well?
Baxtrom's opinion of Joel's eyes was much different than the first. He discontinued the eye patches. After a straight month of diligent patching, we'd seen zero improvement. He said that he's actually seen negative progress after patching in a case like Joel's. It wasn't that one eye was turning (strabismus, which is what the first doc said it was.) The problem with Joel's eyes is that they aren't working together. If an object appears in his right periferal vision, his left eye has a tendency to turn in anyway, and so his left eye is taking "lead" in a circumstance where the right eye should be turning outward to view the object, and vice-versa. Does that make sense?
There's no reason to patch either eye. They work fine on their own. It's working together that they need help on, which can be done. Did you hear me??? IT CAN BE DONE. Dr. Baxtrom said he has every reason to believe Joel has the potential to have "normal" eyes. No surgery. Just special glasses, and extra practice with lateral tracking.
So he's getting glasses :) Green rubber glasses. They'll get here in a couple of weeks, and the neat thing about them is that the inside of the lenses, (around the bridge of the nose) is hazy. So, in the circumstance I mentioned earlier, when his left eye wants to take lead, it won't be able to, because it won't be able to see through the haze. The right eye will be forced to do it's job.
So there it is. There's the news. It was a great afternoon in Federal Way, and the clinic was by the mall....which we stopped and did a little shopping. Early enough that there were no shoppers, we got to take Joel to a mall, safely, without the panic that someone would cough on him, or not be able to find a plug in with the holiday crowds. And he saw Santa :) I'll post a pic soon of that. It was classic.
Saturday, November 20, 2010
New stuff
During this time of such crazy mommy emotions, I've neglected to mention all of the amazing things happening for J-O-E-L!!!
We went for an appointment on Veteran's Day, and Dr. Ricker was so pleased with Joel's progress off the ventilator that he made new orders for Joel to be off the vent during all waking hours! We are so pleased with this news. It allows us to have more freedom, and our schedule has cleared up too. J can come in the kitchen with me when I'm cooking dinner. He can come in the bathroom with me when I'm putting on my make-up....normal. Key word is normal. Even though the winter "scare" has gotten me a little undertow, having a cordless baby is absolutely wonderful. I'm so proud of him. He's been on these new orders for 9 days now, and he's handling it great!
We got connected to a feeding team out of Mary Bridge, a combination of J's G.I. doc, our dietician, an occupational therapist, Diana, who we worked with as an inpatient, and Jennifer Sarver, (who we LOVE!!!,) our speech therapist. We've been working so hard at home on Joel's feeding trials, and they're a total pain in the butt....so much preparation for 30 seconds of show, followed by barfing, or gagging, and that pretty much sums it up. I've been eating cold dinners for a solid month, (as us typical mommies do,) and although there are nights when I want to just skip it, we don't. I've never been so proud as I was at that appointment. Joel has a new habit of hating his therapies. We have 4 in-home therapies a week, and the moment those women walk in the door, Joel rolls over, telling us, "Nope, I'm not doing work today."
At the feeding appointment, Joel did a solid hour of work. It was awesome!!! They introduced new instruments for us to use, switching from a spoon to a "dip," and considering the amount of food he was actually taking by mouth, he'll be getting more from dipping. Our hard work has payed off.
We went for an appointment on Veteran's Day, and Dr. Ricker was so pleased with Joel's progress off the ventilator that he made new orders for Joel to be off the vent during all waking hours! We are so pleased with this news. It allows us to have more freedom, and our schedule has cleared up too. J can come in the kitchen with me when I'm cooking dinner. He can come in the bathroom with me when I'm putting on my make-up....normal. Key word is normal. Even though the winter "scare" has gotten me a little undertow, having a cordless baby is absolutely wonderful. I'm so proud of him. He's been on these new orders for 9 days now, and he's handling it great!
We got connected to a feeding team out of Mary Bridge, a combination of J's G.I. doc, our dietician, an occupational therapist, Diana, who we worked with as an inpatient, and Jennifer Sarver, (who we LOVE!!!,) our speech therapist. We've been working so hard at home on Joel's feeding trials, and they're a total pain in the butt....so much preparation for 30 seconds of show, followed by barfing, or gagging, and that pretty much sums it up. I've been eating cold dinners for a solid month, (as us typical mommies do,) and although there are nights when I want to just skip it, we don't. I've never been so proud as I was at that appointment. Joel has a new habit of hating his therapies. We have 4 in-home therapies a week, and the moment those women walk in the door, Joel rolls over, telling us, "Nope, I'm not doing work today."
At the feeding appointment, Joel did a solid hour of work. It was awesome!!! They introduced new instruments for us to use, switching from a spoon to a "dip," and considering the amount of food he was actually taking by mouth, he'll be getting more from dipping. Our hard work has payed off.
Saturday, November 13, 2010
Today.
I am having more and more days where I am happy. Happy about my wonderfully blessed role as a mommy, happy with my marriage, happy, happy, happy....
and then there are nights like tonight, when Joel was throwing a fit, and desatting, and the neb and the suction were getting caught on the crib bar, and the feeding stand was in the way of the vent stand, and the vent circuit got condensation inside it and beeped continuously.....I just want to pick up my baby. I screamed, "I HATE CORDS! I HATE CORDS!," like a child would. Seriously. It felt great temporarily, but I just want to cry tonight.
People ask how Joel is doing, how we are doing, and I always answer the same. He's great. We're great. Home is great. That is true. We are great. Home is great. Joel is great. But the fact is that marriage is hard with extra stress in it. The mommy job is neverending as it is, and it's worse when you have someone in your home for 16 hours a day notice every parenting screw-up you make. It's tough to have breast-feeding mommies as friends, when I so desperately wanted to nurse my last baby and wasn't able to. It's frustrating to have people ask me in public how many children I have, and then get a confused look when I tell them that we have an infant, but he's home with a nurse.
This is a tough time. We are going through a tough time. I have so many people around me, and I've never felt so lonely in my entire life.
and then there are nights like tonight, when Joel was throwing a fit, and desatting, and the neb and the suction were getting caught on the crib bar, and the feeding stand was in the way of the vent stand, and the vent circuit got condensation inside it and beeped continuously.....I just want to pick up my baby. I screamed, "I HATE CORDS! I HATE CORDS!," like a child would. Seriously. It felt great temporarily, but I just want to cry tonight.
People ask how Joel is doing, how we are doing, and I always answer the same. He's great. We're great. Home is great. That is true. We are great. Home is great. Joel is great. But the fact is that marriage is hard with extra stress in it. The mommy job is neverending as it is, and it's worse when you have someone in your home for 16 hours a day notice every parenting screw-up you make. It's tough to have breast-feeding mommies as friends, when I so desperately wanted to nurse my last baby and wasn't able to. It's frustrating to have people ask me in public how many children I have, and then get a confused look when I tell them that we have an infant, but he's home with a nurse.
This is a tough time. We are going through a tough time. I have so many people around me, and I've never felt so lonely in my entire life.
Monday, November 8, 2010
Sunday, November 7, 2010
Change of Heart?
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| Love those big teefers, bud! |
Tuesday, November 2, 2010
Eat it up, buddy!
Feeding. Again. I'm sure there will be lots of posting about food. It's not a fun topic in this house. We're so far away from our goal, and we're just getting started on a long journey. Here's how the last few days have gone:
Friday: Took 3 bites of formula & rice cereal. Gagged. Done.
Saturday: 4 bites. Gagged. Barfed. Done.
Sunday: Chaotic, skipped dinner.
Monday: 2 Bites, Gagged, Barfed. Cried. Done.
Tonight: 3 decent sized bites, no gagging. Ended on a good note :)
We're still in the beginning stages, but I've gotten a lot of encouragement from others who have gone through this, and I'm determined not to give him a rest. If he's not sick, he has to try food. His schedule will involve eating. We're re-arranging dinner around him, because he needs it. THIS WILL PAY OFF someday....but for the record, this is very trying. I am not a patient person, and I want to push him to take more each day. This is not that easy. This is not a picu battle, it's a nicu battle.....slow and steady wins the race!
Friday: Took 3 bites of formula & rice cereal. Gagged. Done.
Saturday: 4 bites. Gagged. Barfed. Done.
Sunday: Chaotic, skipped dinner.
Monday: 2 Bites, Gagged, Barfed. Cried. Done.
Tonight: 3 decent sized bites, no gagging. Ended on a good note :)
We're still in the beginning stages, but I've gotten a lot of encouragement from others who have gone through this, and I'm determined not to give him a rest. If he's not sick, he has to try food. His schedule will involve eating. We're re-arranging dinner around him, because he needs it. THIS WILL PAY OFF someday....but for the record, this is very trying. I am not a patient person, and I want to push him to take more each day. This is not that easy. This is not a picu battle, it's a nicu battle.....slow and steady wins the race!
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