I've noticed some differences of being in the hospital with Jacob versus with the Baby (the only other one I've been in the hospital for recently). I always thought lots more people came in to see Manny than needed to just because he's cute. And who comes in to see a (sometimes) smelly, hairy teenaged boy?
Yes, Jacob might have just turned 12. And yes, he is 5'8" and 135 pounds. Wears bigger clothes than I do and the same size shoe as Daddy. He has a mustache and is getting facial hair. Has long had armpit hair and lately has been telling me about his hair on his ... knuckles. (Had you scared there, huh?) Full teenaged boy status!
But what people might not notice about Jacob is that he is one of the kindest, sweetest kids around. He's interesting, funny and compasionate. He has the greatest smile. And behind those glasss ... he has the best eyelashes I've ever seen!
Since he's been home with me, he's noticing all I do. He told me he used to think my day was easy. Take the kids to school, clean the house, watch House on TV while eating chips. (That boy knows me! LOL) And then he realized it was anything BUT that. He said he was going to do something about making sure that happened one day. To have just ONE HOUR of peace and quiet so I could do that. (I thought it funny that he thought I only deserved one hour, but that's another story.)
Last night, all of the sudden he says, "Hey Mom! I Did it!!" And we both realized we were sitting in quiet, watching House. He then said, "Thanks kidneys." And I didn't let him know it but I cried. I'm crying now typing this. I told him let's do this again, just him and me, spending some quiet time alone. But next time, let's skip the painful part.
And just in case you aren't fully in love with this smelly teenaged boy yet, here's another story from last week. We were driving to yet another doctor's appointment. He was in the back seat next to Manny. Out of the clear blue he says, "What happens to Manny when you and Dad get too old to take care of him?"
My heart skipped a beat. I told him that first we would be thrilled because that meant God had healed him and let him live. Secondly, if God heals him, then we're hoping He heals him all the way and he'll be able to take care of himself.
And before I could get any further in the story, he interrupted to tell me, "I'll take care of him."
Do you have any clue how hard it is to steer a 15 passenger van with tears strolling down your face?
How did I get so blessed to be the one chosen to mother this precious soul?
Oct 12, 2010
Oct 11, 2010
Jacob's Biopsy
For the past 2 weeks, we have been doing a LOT of talking. We looked at pictures on the internet, read many articles about the kidneys and biopsies and what to expect. All of it seemed to really help Jacob stay calm.
I love that he is finally able to share his concerns, thoughts and feelings. Just a few short months ago, he wasn't able to do that. And as a mother, I do some pretty good "guessing" but it's not the same as KNOWING what is going on.
This morning we got up very early and my Mother and Father took us to the hospital (about an hour away to this Children's hospital). By 9:15 he was taken back. By 11am we were in a room.
The Pediatric Nephrologist Dr. Perlman said all went very well. Only had to take one small section and she said it had only one TINY bleed. (Which is GREAT news!!)
7pm update: no bleeding still. They expected at least SOME amount of blood but NOTHING!!
So what have we done all day? Jacob has been resting, playing Nintendo, watching movies, reading books and eating. Me? I've been working on the computer, channel surfing, eating.
(We also had an unexpected visit from a friend, Rich. Thanks for the salad and fruit (knows me well). That ensured I didn't have to go down and pick out dinner! )
At one point I stopped everything and said, "Listen, Jacob." And there was just perfect silence. I don't think I've heard that in MONTHS! No arguing, no whining, no complaining, no whirring of machines.... NOTHING. I think they call it silence. I think I like it.
So we're in this newHotel Hospital in St. Pete. There's a huge 42 inch plasma tv for him, a smaller one for me. It's a private room with our own shower. We have a beautiful view of the city and the water.
Jacob's favorite part??? The room service. Seriously. Not typical trays of hospital foods. It's a menu. You call up room service and order whatever the heck you want off the menu! He is in heaven. I'm afraid he won't want to leave in the morning. They have a better menu than the top 10 restaurants around combined! So much variety. Junk food, healthy food, snacks, etc.
And for me, I went downstairs earlier and they had chicken ceasar salad (huge) for under $5. I couldn't eat it all.
We realized this is the first time that he's been in the hospital since he was born. And since I wasn't there with him then, I've never spent time with him in the hospital. In fact, it's the first time I've spent a night alone with him. So we're enjoying just "hanging out".
I just asked Jacob if he would like to share anything. He said, "Just what I'm enjoying."
Me: What's that?
Him: The resting and the quiet.
We are so very thankful for all the prayers that this go smoothly. And we will be expecting results in about 2 weeks (which we will of course share).
I love that he is finally able to share his concerns, thoughts and feelings. Just a few short months ago, he wasn't able to do that. And as a mother, I do some pretty good "guessing" but it's not the same as KNOWING what is going on.
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| Before the Biopsy |
The Pediatric Nephrologist Dr. Perlman said all went very well. Only had to take one small section and she said it had only one TINY bleed. (Which is GREAT news!!)
7pm update: no bleeding still. They expected at least SOME amount of blood but NOTHING!!
So what have we done all day? Jacob has been resting, playing Nintendo, watching movies, reading books and eating. Me? I've been working on the computer, channel surfing, eating.
(We also had an unexpected visit from a friend, Rich. Thanks for the salad and fruit (knows me well). That ensured I didn't have to go down and pick out dinner! )
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| After, watching TV |
So we're in this new
And since Jacob isn't in pain (even without pain meds!!) and no complications, this has been more like a hotel. Seriously! Hospitals are usually so stressful. But today was pretty calm (once we got in the room and past the procedure). The only part he doesn't like is that he can't get up the whole time he's here ... for any reason. But even that, he's making the best of it.
And for me, I went downstairs earlier and they had chicken ceasar salad (huge) for under $5. I couldn't eat it all.
We realized this is the first time that he's been in the hospital since he was born. And since I wasn't there with him then, I've never spent time with him in the hospital. In fact, it's the first time I've spent a night alone with him. So we're enjoying just "hanging out".
I just asked Jacob if he would like to share anything. He said, "Just what I'm enjoying."
Me: What's that?
Him: The resting and the quiet.
We are so very thankful for all the prayers that this go smoothly. And we will be expecting results in about 2 weeks (which we will of course share).
Biggest and Littlest
10/10/10 ... what a cool date. I only wish I had cool news to go with it. But alas, I have an update of life in general.
Manny ... last night he had another one of his really, really rough nights. He wasn't quite himself yesterday, not as easily consoled, etc. He went to sleep easily last night but woke up an hour later and for the next 3 plus hours ... SCREAMED!
I would play, rock, hold, etc. NOT trying to put him to sleep, just trying to comfort him. Things would work or a few minutes but then right back to it. It was the cry of pain. Tylenol, etc. did nothing but we tried anyway.
About 1:30 he finally fell asleep. But from then until 7am, he woke up every 5-15 minutes all night long. Not exactly fully awake, just crying. I would readjust his position and it would help sometimes for a few minutes then back to crying again.
This morning, I gave him to Kaley (age 10) and asked her to play with him. I ended up sleeping for 2 hours ... the only sleep I got. I LOVE that girl!
And then today, the baby just can't get happy for more than a few minutes at a time. Then about 1 hour ago, he has a fever. It's climbing.
I had the brilliant idea to go to the used kid's store and see if they had a swing big enough for him since we have nothing like that (Never needed it). He tried out several and I left with the one that made him giggle. I am praying it helps him sleep tonight. And yes, I stocked up on extra batteries! (Experienced Mom you can tell.)
Now about Jacob ... 6am we'll be headed out the door for the biopsy. He's a bit nervous but we've talked it all through. I think we're both anxious to get the results (2 weeks). He'll be in the hospital overnight, observed for possible bleeding complications. I'm hoping this hospital has internet access so we can update (not the usual hospital we go to so I don't know).
Thanks for all the prayers for both of my boys, biggest and littlest.
Manny ... last night he had another one of his really, really rough nights. He wasn't quite himself yesterday, not as easily consoled, etc. He went to sleep easily last night but woke up an hour later and for the next 3 plus hours ... SCREAMED!
I would play, rock, hold, etc. NOT trying to put him to sleep, just trying to comfort him. Things would work or a few minutes but then right back to it. It was the cry of pain. Tylenol, etc. did nothing but we tried anyway.
About 1:30 he finally fell asleep. But from then until 7am, he woke up every 5-15 minutes all night long. Not exactly fully awake, just crying. I would readjust his position and it would help sometimes for a few minutes then back to crying again.
This morning, I gave him to Kaley (age 10) and asked her to play with him. I ended up sleeping for 2 hours ... the only sleep I got. I LOVE that girl!
And then today, the baby just can't get happy for more than a few minutes at a time. Then about 1 hour ago, he has a fever. It's climbing.
I had the brilliant idea to go to the used kid's store and see if they had a swing big enough for him since we have nothing like that (Never needed it). He tried out several and I left with the one that made him giggle. I am praying it helps him sleep tonight. And yes, I stocked up on extra batteries! (Experienced Mom you can tell.)
Now about Jacob ... 6am we'll be headed out the door for the biopsy. He's a bit nervous but we've talked it all through. I think we're both anxious to get the results (2 weeks). He'll be in the hospital overnight, observed for possible bleeding complications. I'm hoping this hospital has internet access so we can update (not the usual hospital we go to so I don't know).
Thanks for all the prayers for both of my boys, biggest and littlest.
Oct 8, 2010
Venting alert
My blood is just BOILING.
I guess after 6 adoptions I should be used to this ... but I'm not. And I don't think I SHOULD ever get used to this! It's discrimination. It's not right.
Let's say I call or go into a Doctor's office. I fill out the paperwork or give the required information. Then somehow they find out the child is adopted and now new rules apply. Like I took Sam (Caucasian) into a place and even though "Adopted" was on his paperwork, they never asked for anything additional. But Jacob (African American) goes into the same office and the same paperwork is marked the same way and they need court orders and everything.
Here's the real scoop: I have a birth certificate that says
Child's Name: Jacob Gore
Mother's Name: Beth Gore
Father's Name: Daniel Gore
There is NOTHING on there that indicates in any way that this child was not BORN to me.
So today I called a former doctor of Manny's to get some records faxed. (Just found this doc's info.) And I tell her upfront "We have adopted a child that was a patient of yours and we're needing the records faxed to his new doctor please." And I got read the riot act. She was so completely rude. Asking the strangest questions ... NEVER run into this before.
Basically citing me patient confidentiality and all. Which is fine, all for that. But I'm his mother and I have LOTS of proof of that. I offered to fax his birth certificate (saying his name, my name, etc). That should be MORE than enough. But no, she wanted the adoption records. (Fine, I can do that.) And then she started saying that only my adoption agency could send this, that she'd have to have an affidavit, etc etc before she would even RECEIVE anything from us as "Proof".
I told her - If I would have called in and said, "Hi, I'm the mother of XX and I'd like this..." that she would have immediately given me what I wanted. It's because I was HONEST with her upfront about the adoption (and resulting name change) that caused he to basically treat me like a lying criminal.
And instead of seeing my point, she went back into Patient confidentiality. I am his MOTHER!!!!! Every legal right in the world, as if he were born to me. (Those words are actually in the oath we take in court and on the court records.)
I hung up. (Not a proud moment for me ... but I figured as upset as I was, it would be better to stop than to say something I regret.)
I completely respect patient confidentiality issues. That's a given. I was willing to give her tons of proof of who I was. But she had such a wall of discrimination in her mind that there was no way around it. (I'll just have my doctor's office request the records so we'll get it.) My fight isn't with this receptionist.
I think this pushes my buttons on so many levels. But mostly, it's a slap in the face of all adoptive parents saying that no matter what classes we take, hoops we jump through, legal steps we take, etc ... we will never be "REAL" parents in the eyes of some people. And that is not OK with me.
I guess after 6 adoptions I should be used to this ... but I'm not. And I don't think I SHOULD ever get used to this! It's discrimination. It's not right.
Let's say I call or go into a Doctor's office. I fill out the paperwork or give the required information. Then somehow they find out the child is adopted and now new rules apply. Like I took Sam (Caucasian) into a place and even though "Adopted" was on his paperwork, they never asked for anything additional. But Jacob (African American) goes into the same office and the same paperwork is marked the same way and they need court orders and everything.
Here's the real scoop: I have a birth certificate that says
Child's Name: Jacob Gore
Mother's Name: Beth Gore
Father's Name: Daniel Gore
There is NOTHING on there that indicates in any way that this child was not BORN to me.
So today I called a former doctor of Manny's to get some records faxed. (Just found this doc's info.) And I tell her upfront "We have adopted a child that was a patient of yours and we're needing the records faxed to his new doctor please." And I got read the riot act. She was so completely rude. Asking the strangest questions ... NEVER run into this before.
Basically citing me patient confidentiality and all. Which is fine, all for that. But I'm his mother and I have LOTS of proof of that. I offered to fax his birth certificate (saying his name, my name, etc). That should be MORE than enough. But no, she wanted the adoption records. (Fine, I can do that.) And then she started saying that only my adoption agency could send this, that she'd have to have an affidavit, etc etc before she would even RECEIVE anything from us as "Proof".
I told her - If I would have called in and said, "Hi, I'm the mother of XX and I'd like this..." that she would have immediately given me what I wanted. It's because I was HONEST with her upfront about the adoption (and resulting name change) that caused he to basically treat me like a lying criminal.
And instead of seeing my point, she went back into Patient confidentiality. I am his MOTHER!!!!! Every legal right in the world, as if he were born to me. (Those words are actually in the oath we take in court and on the court records.)
I hung up. (Not a proud moment for me ... but I figured as upset as I was, it would be better to stop than to say something I regret.)
I completely respect patient confidentiality issues. That's a given. I was willing to give her tons of proof of who I was. But she had such a wall of discrimination in her mind that there was no way around it. (I'll just have my doctor's office request the records so we'll get it.) My fight isn't with this receptionist.
I think this pushes my buttons on so many levels. But mostly, it's a slap in the face of all adoptive parents saying that no matter what classes we take, hoops we jump through, legal steps we take, etc ... we will never be "REAL" parents in the eyes of some people. And that is not OK with me.
Oct 6, 2010
Funny Little Baby
Tonight I was noticing that I have a lot of pictures of Manny that I haven't used yet, hoping I'd get around to a blog entry for each one. But alas, the life of a mother of 6 (2 of which are always at the doctor it seems), who has a part time job, who takes motivational speaking engagements, etc. leaves me not as much time blogging as I would like.
Then it hit me ... I could do just a photography layout with just a small caption. (Duh). So hope you enjoy some random pictures of our funny little baby.
Then it hit me ... I could do just a photography layout with just a small caption. (Duh). So hope you enjoy some random pictures of our funny little baby.
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| Baby dedication day in Baseball Outfit |
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| Look who is sitting in a buggy by himself! Only a few minutes but he did it |
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| And look at me sitting in a chair! |
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| "Hensinger Collar" ... just got it but PT says we don't really need it! |
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| Sitting independently in an Elmo chair |
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| See? Proof he's holding his head |
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| Wearing Mama's glasses |
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| Goo-goo goggles like in Dr. Seuss |
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| We be jammin' |
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| Love how he is looking adoringly at them (not to mention sitting well) |
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| Now you know why I am not always quick on my computer ... I have to share |
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| Kaley rigged up this baby car so he could ride. She's so inventive and he loved it |
Oct 5, 2010
The Good News
You know how Jacob has been diagnosed with Chronic Kidney Disease and possible kidney failure? (Not the good news). Well, they say it might be genetic so they wanted Kaley tested. She will be 11 on 11/11. (Cool, huh? Oh and another quick number ... next year on 11/11/11, she will stop being 11 and turn 12 ... not many people have such a cool birthday.)
Tests came back today NEGATIVE for Kaley!
I wasn't aware of how anxious I was about this possibility until I got the good news late this afternoon! I breathed a huge sigh of relief and actually broke into tears. I felt the stress rolling off of me. I know that if she did have it, we'd be in for the long haul. We'd fight that too. But truthfully? I'm not ready for another big fight.
2 kids with a life threatening condition at a time is enough! (Too much really, but you know what I mean.)
She will continue to have urine tests every year probably for the rest of her life because she has a first degree relative with this ... and if she ever develops it, we'll have caught it early. But in the meantime, NO Kidney disease for Kaley!
Now about Jacob ... finally got the biopsy scheduled. It's for 10/11 at 9am. He will be in the hospital for a 23 hour admit. Test results won't be back for about 2 weeks. We'll schedule with the Nephrologist for a follow up near the end of October to hear the news, the plan, etc.
In the meantime, MY plan is for God to do another complete restoration like He's doing with Manny! I'd love to baffle a new set of doctors.
I'll update when there's news.
I wasn't aware of how anxious I was about this possibility until I got the good news late this afternoon! I breathed a huge sigh of relief and actually broke into tears. I felt the stress rolling off of me. I know that if she did have it, we'd be in for the long haul. We'd fight that too. But truthfully? I'm not ready for another big fight.
2 kids with a life threatening condition at a time is enough! (Too much really, but you know what I mean.)
She will continue to have urine tests every year probably for the rest of her life because she has a first degree relative with this ... and if she ever develops it, we'll have caught it early. But in the meantime, NO Kidney disease for Kaley!
Now about Jacob ... finally got the biopsy scheduled. It's for 10/11 at 9am. He will be in the hospital for a 23 hour admit. Test results won't be back for about 2 weeks. We'll schedule with the Nephrologist for a follow up near the end of October to hear the news, the plan, etc.
In the meantime, MY plan is for God to do another complete restoration like He's doing with Manny! I'd love to baffle a new set of doctors.
I'll update when there's news.
Oct 4, 2010
6 months later
Every wonder what Manny was like before we got him?
This video was taken during his hospital stay before his gtube surgery.
Look at those GORGEOUS EYES!
He was 8 months.
(To hear the videos better, you may need to scroll down to the bottom right and pause the music playing.)
Pretty poignant to me to see just how little he could move. His hands are stuck in "dystonia". His hands do move a tiny bit but not much. And you can see his legs/toes move a tiny bit. And you have to realize, this lady was working HARD to get his to laugh. And this was the maximum movement he had.
And now to think where he is now! 6 months later. (See the video ... from about 3 weeks ago so he can do even MORE things now!)
http://www.youtube.com/watch?v=fbcSAVNSslM
He is holding his head independently (for up to an hour at a time). He can spontaneously say about 20 words. Mimics many, many words. He can sign about 15 words.
His his hands are not "stuck" any more. He used to be able to hold a sticker, now he is strong enough to hold a cell phone. He can get his hands to his face and rub his eyes or nose. His shoulders are starting to get into the act.
His legs can now use the push and pull movements (think bicycle). He cannot support any weight on them (yet) but he has reflexes in them (he had NONE before).
One of his favorite activities is pulling objects from a cup and putting them back in. He can do a task like this for an hour! He has a very, very long attention span.
I could go on and on about how proud I am of this little guy. Every day he does something new he couldn't do the day before.
Looking forward to the day when he can eat by mouth, crawl and walk!
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