Life The Requested Life Update - Page 2

'Hamas' Jenkins · 01-08-2013, 08:43 PM

Initial thread:

http://www.chiefsplanet.com/BB/showthread.php?t=247772

The only way to properly begin this post is a sincere offering of gratitude for everyone that expressed care and concern for our girls. I’m amazed at the level of interest and support shown by the posters on this site. When people like Phobia and htismaqe say this place is a community, those aren’t empty words.

First, a PSA: When you take infant twins out in public it’s like being an F-list celebrity. Every sixth person you walk by in the mall or at the store says, “Oh look, twins!!” which is nice at first, but becomes increasingly annoying in the subsequent weeks and months. Yes, those are twins. Believe it or not, I can hear as well, which makes such passing comments a mixture of humorous, odd, refreshing, and irritating.

Additionally, if you say you want twins you also need to realize the work involved with juggling two babies at once, especially during diaper changes and baths. It’s not a summative, it’s exponential, especially if you are at home by yourself and one or both of them has had a blowout. That’s not to say it’s not worthwhile, but it is ****ing exhausting.

With that grievance aired, I’ll move on to the meat of this post: an update on how the girls are doing.

Hailey first. As I’m sure a lot of you remember, she had a significantly rougher initial course. Most of the important stuff is already mentioned within this thread, so I’ll update you on what has happened since.
She finally got past her issues with retinopathy, but as a result of the laser surgery she’s nearsighted. For a while her physical therapist thought she might also cognitive visual impairment (Google it if interested), but her vision in all fields and ability to pick out colors and respond to lights and shapes has tested out as perfectly normal. That said, she does need glasses to see optimally, and although she usually wears them pretty well, there are times when she’s done with it and just rips them off, chucks them, or tries to eat the plastic ear socks.

She also needed surgery around the musculature of her eyes to make sure that they both aligned properly. She had an initial procedure done in mid October. It’s likely that she’ll have another done this spring for a precise touch up and centering.

Fortunately, she eats well, feeds herself completely, drinks from straws and sippie cups, she does extremely well making sounds, imitating our sounds, communicating in general, and she even knows some sign language. It’s hard to pinpoint a child’s cognitive development at such a young age, but my wife and I, as well as her therapists, are very pleased with her cognitive function.

The area where Hailey lags behind the greatest is gross motor function. This is a result of the hypoxic environment that necessitated her delivery. As a result of the initial brain trauma to her ventricles, she displays textbook signs of spastic diplegia, the most common form of Cerebral Palsy. Because of this she’s behind her sister in movement and ambulation. She can crawl, but it’s not as graceful. Merely sitting in a proper position has required a great deal of therapy and effort. However, our PT, who is among the most dedicated and wonderful people to ever grace the Earth, is confident that she will be able to walk, albeit with some type of assistance. What type, we don’t currently know.

As a result of her therapy we are the temporary owners of the world’s smallest treadmill, one designed for toddlers. It’s about two feet long and has a rotary dial of speeds ranging from 0.1-0.5 meters/second. We use it during therapy to help her learn the proper gait pattern and weight shifting, as the tendency with people who have CP is to walk with a scissors gait, AKA pigeon-toed and on their tiptoes.

In addition to PT, which she has three times per week for an hour each, and occupational therapy, which she has two times a month for an hour, we give her a synthetic compound called Baclofen. It’s easiest to think of it as an artificial amino acid. Most individuals with CP are not able to absorb a specific amino acid called GABA; Baclofen is a synthetic version with a specific marker that allows their nerves to recognize it, which improves muscle coordination and function.

When considering Hailey’s issue with muscle tone, it helps me to think of driving over a bridge with a metal frame spanning above the road surface. If you’ve ever done so while listening to AM radio you’re familiar with reception loss. That’s the closest analogue I can think of for her injury. It’s not that she can’t send the signal to move and it’s not that her muscles are completely incapable of receiving the message, but there is a great deal of interference in the chain which precludes efficient communication.
However, considering where she started, she’s made phenomenal progress. I don’t like to use words like “normal” for a variety of reasons; my greatest hope for her is that she is able to lead an independent life and that she can do what she wants. Although I realize that she’ll never be an Olympic sprinter, I am a mixture of hopeful, confident, and highly anxious that she will be able to gain that independence that we so want her to have.

Moving on: Logan is a toddler. She’s wild, crazy, hilarious, and oftentimes bizarre. She has a maniacal laugh that is a mixture of Woody Woodpecker and Elmer Fudd that she unleashes at random moments. She’s a born climber, and has managed to figure out how to climb on to our coach by using the ottoman as a staging ground. She’s obsessed with small electronics like our remote control, but fortunately she doesn’t really care to watch television, but she does love to empty my DVD shelf, spilling dozens of cases on the floor. For months her favorite toy was the USB dongle for my wired Xbox controller. If she was upset the ready salve was “Where’s your dongle?” At that point, she’d grab it and usually bash something. She also loves to read. Today I think my wife read her seven or eight Sandra Boykin (sp?)-esque books.

She and Hailey get along pretty well, although Logan occasionally conks her with a toy hammer or scratches her face, fear not because Hailey protects herself through a series of vicious bites. They play together more daily.

We don’t have a lot to bitch about. I’ll be honest that I often have pangs of remorse, especially that I’m now at a stage of my life that many of my friends are having children in complication-free pregnancies, but spending as much time in the NICU as we did, and going to some of the reunions of children who have matriculated through, I’ve seen how bad the other side can be, from feeding tubes, to wheelchairs, to devastating brain injuries that will leave children unable to care for themselves or probably know where or who they are. It could have been so much worse. I’m not an optimistic person, but I do like to think of myself as pragmatic. I’m not hoping against hope for some type of panacea that will undo everything, nor am I deluded enough to think that Hailey and/or Logan won’t face developmental issues or teasing down the road, but I am happy and grateful for where they are at.

I’m also thankful for how many of you have shown interest and affection for two children you’ve never met.

You have my enduring gratitude.

Now, some photos:

Hailey's Halloween Costume. She was Hailey Potter:

Logan was Hulk Logan:

From a Christmas Photo Session. Logan (L) Hailey (R)

'Hamas' Jenkins · 01-08-2013, 09:01 PM

Quote:

Originally Posted by The Bad Guy

Gorgeous kids man. Congratulations on their success.

That Hulk Hogan costume is the greatest thing ever. Where did you find that gem?

My wife found the shirt on Amazon. She bought two pieces of foam, one gold glitter and one black, for the belt, then used a photo of the old WCW/NWA big gold belt as a template.

For the hair she bought blonde extensions and then hot glued them into a headband to give the skullet look. The boots were done by putting on socks, wrapping yellow duct tape around them, then cutting out a tongue slot, punching holes in the fabric, and threading through laces.

**SAUTO** · 01-08-2013, 09:03 PM

Quote:

Originally Posted by 'Hamas' Jenkins

Appreciate the advice. I don't want you to think that I dwell on such things, I just try to be honest about my experience. There have been times when I've been remorseful, but by no means am I consumed by what-ifs.

it's an understandable emotion.

But not everyone could do what you do on a daily basis. Let the knowledge of that help you through the tough times.

And trust me I have seen some TERRIBLE parents of disabled children out there... Some people who look like they would "get it", but definitely don't.
Posted via Mobile Device

**BigRedChief** · 01-08-2013, 09:04 PM

Quote:

Originally Posted by 'Hamas' Jenkins

Appreciate the advice. I don't want you to think that I dwell on such things, I just try to be honest about my experience. There have been times when I've been remorseful, but by no means am I consumed by what-ifs.

Hamas thanks for sharing. Glad to see you again. You are missed around this place. But, we understand your priorities.

**DaFace** · 01-08-2013, 09:04 PM

Thanks for the update, man. All the best to you and the family.

Fritz88 · 01-08-2013, 09:06 PM

Good to hear. They look ****ing adorable.

I once baby sat my niece and her brother for 7 hours. It was a nightmare. I love them to death, but it was too much for me to handle too at once even for a short time.

Good luck.

ChiefsCountry · 01-08-2013, 09:08 PM

Good to hear man.

**The Bad Guy** · 01-08-2013, 09:09 PM

Nice to see another parent with a Sophie the Giraffe.

A glorified dog chew toy with safe paint for 20 bucks.

**Buehler445** · 01-08-2013, 09:09 PM

Thanks for the update bud. I've been keeping you and your girls in my thoughts.

All the best to you and yours.

**the Talking Can** · 01-08-2013, 09:10 PM

so important, whether or not we draft...

bless you and your family, hamas, they're beautiful

**SAUTO** · 01-08-2013, 09:12 PM

Quote:

Originally Posted by The Bad Guy

Nice to see another parent with a Sophie the Giraffe.

A glorified dog chew toy with safe paint for 20 bucks.

really? I thought EVERYONE had multiple Sophie the Giraffes.
Posted via Mobile Device

**cabletech94** · 01-08-2013, 09:14 PM

great looking kids!!! thanks for the update, and welcome back!!!

p.s. don't leave again, please.

Ace Gunner · 01-08-2013, 09:17 PM

Cute cute! You are quite the man, Hamas. More power to ya.

**The Bad Guy** · 01-08-2013, 09:19 PM

Quote:

Originally Posted by JASONSAUTO

really? I thought EVERYONE had multiple Sophie the Giraffes.
Posted via Mobile Device

Not my friends.

Don't get the appeal, but my little guy freaking loved that thing.

Pushead2 · 01-08-2013, 09:20 PM

Dusty in here......

You're a great father already. Beautiful family.

**SAUTO** · 01-08-2013, 09:23 PM

Quote:

Originally Posted by The Bad Guy

Not my friends.

Don't get the appeal, but my little guy freaking loved that thing.

My daughter loves hers.

And the new guy likes looking at his, he will goo goo GA GA at it all the time lol
Posted via Mobile Device

01-08-2013, 08:43 PM
'Hamas' Jenkins Now you've pissed me off! Join Date: Jan 2006 Casino cash: $8019572	The Requested Life Update Initial thread: http://www.chiefsplanet.com/BB/showthread.php?t=247772 The only way to properly begin this post is a sincere offering of gratitude for everyone that expressed care and concern for our girls. I’m amazed at the level of interest and support shown by the posters on this site. When people like Phobia and htismaqe say this place is a community, those aren’t empty words. First, a PSA: When you take infant twins out in public it’s like being an F-list celebrity. Every sixth person you walk by in the mall or at the store says, “Oh look, twins!!” which is nice at first, but becomes increasingly annoying in the subsequent weeks and months. Yes, those are twins. Believe it or not, I can hear as well, which makes such passing comments a mixture of humorous, odd, refreshing, and irritating. Additionally, if you say you want twins you also need to realize the work involved with juggling two babies at once, especially during diaper changes and baths. It’s not a summative, it’s exponential, especially if you are at home by yourself and one or both of them has had a blowout. That’s not to say it’s not worthwhile, but it is ****ing exhausting. With that grievance aired, I’ll move on to the meat of this post: an update on how the girls are doing. Hailey first. As I’m sure a lot of you remember, she had a significantly rougher initial course. Most of the important stuff is already mentioned within this thread, so I’ll update you on what has happened since. She finally got past her issues with retinopathy, but as a result of the laser surgery she’s nearsighted. For a while her physical therapist thought she might also cognitive visual impairment (Google it if interested), but her vision in all fields and ability to pick out colors and respond to lights and shapes has tested out as perfectly normal. That said, she does need glasses to see optimally, and although she usually wears them pretty well, there are times when she’s done with it and just rips them off, chucks them, or tries to eat the plastic ear socks. She also needed surgery around the musculature of her eyes to make sure that they both aligned properly. She had an initial procedure done in mid October. It’s likely that she’ll have another done this spring for a precise touch up and centering. Fortunately, she eats well, feeds herself completely, drinks from straws and sippie cups, she does extremely well making sounds, imitating our sounds, communicating in general, and she even knows some sign language. It’s hard to pinpoint a child’s cognitive development at such a young age, but my wife and I, as well as her therapists, are very pleased with her cognitive function. The area where Hailey lags behind the greatest is gross motor function. This is a result of the hypoxic environment that necessitated her delivery. As a result of the initial brain trauma to her ventricles, she displays textbook signs of spastic diplegia, the most common form of Cerebral Palsy. Because of this she’s behind her sister in movement and ambulation. She can crawl, but it’s not as graceful. Merely sitting in a proper position has required a great deal of therapy and effort. However, our PT, who is among the most dedicated and wonderful people to ever grace the Earth, is confident that she will be able to walk, albeit with some type of assistance. What type, we don’t currently know. As a result of her therapy we are the temporary owners of the world’s smallest treadmill, one designed for toddlers. It’s about two feet long and has a rotary dial of speeds ranging from 0.1-0.5 meters/second. We use it during therapy to help her learn the proper gait pattern and weight shifting, as the tendency with people who have CP is to walk with a scissors gait, AKA pigeon-toed and on their tiptoes. In addition to PT, which she has three times per week for an hour each, and occupational therapy, which she has two times a month for an hour, we give her a synthetic compound called Baclofen. It’s easiest to think of it as an artificial amino acid. Most individuals with CP are not able to absorb a specific amino acid called GABA; Baclofen is a synthetic version with a specific marker that allows their nerves to recognize it, which improves muscle coordination and function. When considering Hailey’s issue with muscle tone, it helps me to think of driving over a bridge with a metal frame spanning above the road surface. If you’ve ever done so while listening to AM radio you’re familiar with reception loss. That’s the closest analogue I can think of for her injury. It’s not that she can’t send the signal to move and it’s not that her muscles are completely incapable of receiving the message, but there is a great deal of interference in the chain which precludes efficient communication. However, considering where she started, she’s made phenomenal progress. I don’t like to use words like “normal” for a variety of reasons; my greatest hope for her is that she is able to lead an independent life and that she can do what she wants. Although I realize that she’ll never be an Olympic sprinter, I am a mixture of hopeful, confident, and highly anxious that she will be able to gain that independence that we so want her to have. Moving on: Logan is a toddler. She’s wild, crazy, hilarious, and oftentimes bizarre. She has a maniacal laugh that is a mixture of Woody Woodpecker and Elmer Fudd that she unleashes at random moments. She’s a born climber, and has managed to figure out how to climb on to our coach by using the ottoman as a staging ground. She’s obsessed with small electronics like our remote control, but fortunately she doesn’t really care to watch television, but she does love to empty my DVD shelf, spilling dozens of cases on the floor. For months her favorite toy was the USB dongle for my wired Xbox controller. If she was upset the ready salve was “Where’s your dongle?” At that point, she’d grab it and usually bash something. She also loves to read. Today I think my wife read her seven or eight Sandra Boykin (sp?)-esque books. She and Hailey get along pretty well, although Logan occasionally conks her with a toy hammer or scratches her face, fear not because Hailey protects herself through a series of vicious bites. They play together more daily. We don’t have a lot to bitch about. I’ll be honest that I often have pangs of remorse, especially that I’m now at a stage of my life that many of my friends are having children in complication-free pregnancies, but spending as much time in the NICU as we did, and going to some of the reunions of children who have matriculated through, I’ve seen how bad the other side can be, from feeding tubes, to wheelchairs, to devastating brain injuries that will leave children unable to care for themselves or probably know where or who they are. It could have been so much worse. I’m not an optimistic person, but I do like to think of myself as pragmatic. I’m not hoping against hope for some type of panacea that will undo everything, nor am I deluded enough to think that Hailey and/or Logan won’t face developmental issues or teasing down the road, but I am happy and grateful for where they are at. I’m also thankful for how many of you have shown interest and affection for two children you’ve never met. You have my enduring gratitude. Now, some photos: Hailey's Halloween Costume. She was Hailey Potter: Logan was Hulk Logan: From a Christmas Photo Session. Logan (L) Hailey (R)
Posts: 74,820

01-08-2013, 09:04 PM	#19
DaFace Kind of a mod Join Date: Aug 2005 Location: Donkey Land Casino cash: $2126899	Thanks for the update, man. All the best to you and the family.
Posts: 51,710

01-08-2013, 09:06 PM	#20
Fritz88 Custom User Title Join Date: Nov 2008 Casino cash: $8875943	Good to hear. They look ****ing adorable. I once baby sat my niece and her brother for 7 hours. It was a nightmare. I love them to death, but it was too much for me to handle too at once even for a short time. Good luck.
Posts: 12,706

01-08-2013, 09:08 PM	#21
ChiefsCountry The Insider Join Date: Jan 2004 Location: Lake of the Ozarks Casino cash: $2418752	Good to hear man.
Posts: 49,528

01-08-2013, 09:09 PM	#22
The Bad Guy Scott Pioli Join Date: Jan 2001 Location: The Copacobana Casino cash: $9373645	Nice to see another parent with a Sophie the Giraffe. A glorified dog chew toy with safe paint for 20 bucks. __________________
Posts: 23,212

01-08-2013, 09:09 PM	#23
Buehler445 Supporter Join Date: Apr 2007 Location: Scott City KS Casino cash: $2414734	Thanks for the update bud. I've been keeping you and your girls in my thoughts. All the best to you and yours.
Posts: 56,737

01-08-2013, 09:10 PM	#24
the Talking Can Supporter Join Date: Aug 2001 Location: street Casino cash: $10022208	so important, whether or not we draft... bless you and your family, hamas, they're beautiful __________________ Clark Hunt: "Thank god for the Dominican pool boy"
Posts: 51,585

01-08-2013, 09:14 PM	#26
cabletech94 Everything is Awesome!!!!! Join Date: Jul 2008 Location: The Pitt Casino cash: $2186805	great looking kids!!! thanks for the update, and welcome back!!! p.s. don't leave again, please. __________________ Originally Posted by Big Smoke May as well laugh. Otherwise I will probably break shit.
Posts: 10,858

01-08-2013, 09:17 PM	#27
Ace Gunner First Overall Join Date: Jan 2011 Location: kcmo Casino cash: $10007271	Cute cute! You are quite the man, Hamas. More power to ya. __________________ The Greatest
Posts: 10,580

01-08-2013, 09:20 PM	#29
Pushead2 **** off Join Date: Feb 2007 Location: New York Casino cash: $7431882	Dusty in here...... You're a great father already. Beautiful family. __________________ "**** up once, lose two teeth....”
Posts: 5,193

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