ChiefsPlanet - Life The Requested Life Update

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The Requested Life Update (https://www.chiefsplanet.com/BB/showthread.php?t=268646)

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:

http://sphotos-b.xx.fbcdn.net/hphoto...88745539_n.jpg

Logan was Hulk Logan:

http://sphotos-b.xx.fbcdn.net/hphoto...75579422_n.jpg

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

http://sphotos-b.xx.fbcdn.net/hphoto...94380851_n.jpg

Some threads just make you smile when you read them.

Thank you.

Beautiful family, Hamas. Grats and best to the little ones.

That's great man. I've got a couple kids of my own that I want someday.

Good luck man, I know from a very good friend of mine how difficult twins can be. One thing that people underestimate when they say they want twins is how much more high risk the pregnancy is for all involved. In my friends case a late term placental absorption cut off oxygen to his son's brain causing significant mental impairment, it likely put him in a wheelchair all his life. It is the nature of high risk pregnancies.

Best of luck to the health of both of your children and may your daughter keep responding well to her therapy to live an independent and as well as she can. Never underestimate the future of medicine, who knows what miracles we may create in the future.

Wow.

Little dusty in here. Hang on ...

Thanks for taking the time to post that.

God bless you.

One word of advice, try not to think if it as remorse when watching friends with complication free pregnancies.

You are blessed to be chosen to take care of a child like that.

Feel free to pm if you ever need to vent or just shoot the shit about things related.

Ohhhhhh and finding a good pt, and ot was the best thing to happen to us.

Well our nurses were sent from God. IMO
Posted via Mobile Device

Quote:

Originally Posted by Mr_Tomahawk (Post 9298148)

Some threads just make you smile when you read them.

Thank you.

I second that, and I needed it today.

****ing awesome. Great looking kids. Glad to hear things are improving, and getting better. They have some great parents, I have no doubt.

Oh and those are some good looking babies
Posted via Mobile Device

Gorgeous kids man. Congratulations on their success.

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

Crazy stuff life throws at us. It sounds like you guys are great parents and that your girls are growing like crazy. Good luck, kids are crazy fun.

Quote:

Originally Posted by JASONSAUTO (Post 9298162)

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.

Quote:

Originally Posted by The Bad Guy (Post 9298180)

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.

Quote:

Originally Posted by 'Hamas' Jenkins (Post 9298189)

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

Quote:

Originally Posted by 'Hamas' Jenkins (Post 9298189)

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

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

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.

Nice to see another parent with a Sophie the Giraffe.

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

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

All the best to you and yours.

so important, whether or not we draft...

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

Quote:

Originally Posted by The Bad Guy (Post 9298223)

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

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

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

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

Quote:

Originally Posted by JASONSAUTO (Post 9298233)

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.

Dusty in here......

You're a great father already. Beautiful family.

Quote:

Originally Posted by The Bad Guy (Post 9298260)

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

What absolutely gorgeous girls. You are truly blessed. I have to say all my children (4) are grown and I now have 6 grandchildren and all children are a challenge at some time or another. You were chosen to be the father of such beautiful babies because they will always be special and it takes special parents to care for them. You are truly a great man and father and I for one am blessed after having read your post and I thank you for sharing it with us. I am quite sure as they get older any and all problems will get better and better and the tough times will be a distant memory and all the good times will be what you remember most. I will keep you and your beautiful family in my prayers and again thanks so much for sharing such a beautiful story about your challenging year. God Bless.

Damn.

Just realized I need to dust my office more often. Eyes are getting watery.

Thanks for sharing. Glad to hear they are doing well. Love the Halloween costumes.

Thread provides perspective in a number of different ways.

Keep on keeping on, dude. Good looking family.

Thanks for the update, Hamas. The twins are beautiful! So glad to hear things are going well, all things considered. This place has missed you...give 'em hell, man.

And BTW, don't make any more stupid bets, okay?

Continued blessings for you and your girls, Hamas, thanks for the update!

outstanding...what an awesome dad.

my hat is off to you and I wish only the best for you and your girls.

How beautiful and perfect they are!

I really never knew how much you could love until I became a father....I cant evn imagine 2 at once...I thought my wife was pregnant about a month ago (we have a 9 month old) and i had a panic attack...LOL

Youre a good man, and were missed up in this bitch.

Beautiful children. Thanks for sharing your story. It moved me deeply. Sending out good thoughts to your family.

Beautiful family you have there, Mr. Hamas! Thanks for sharing what's been going on in your life. I am completely empathetic to your feelings of remorse. Been down that road myself. Blessings to you, the Mrs... and oh look it's twins! :)

Awesome update...amazing and beautiful kids Hamas.

You have my continued well wishes and prayers.

Thanks for letting us in...much appreciated break from the usual craziness here.

Glad things are going well and glad those babies have parents that will take care of them properly.

Quote:

Originally Posted by The Bad Guy (Post 9298260)

Not my friends.

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

Yeah, I almost shit a brick when my wife told me the cost.

Although I was missing your takes on football I must admit I was waiting for this update on your girls more. Thanks for sharing.

Thanks for the update, man. It's really good to hear how well your two girls are doing. You guys are obviously amazing parents and Hailey and Logan are just as lucky to you have you two as you are to have them.

Seeing how my wife as a nicu nurse could touch so many lives is moving.

Props Hamas.

In your post yesterday I was gonna ask if you were the one with twins.

We lost 4 in 8 years of trying before we had our little angel.

Logan & Hailey are truly blessed to have parents such as you & your wife. Your girls are beautiful.

Cool. Thanks. Congrats. There is no such thing as "Internet" and "IRL". The Internet is IRL for everybody.

Thanks for the update. God Bless you and your family.

Quote:

Originally Posted by WV (Post 9298562)

Simply awesome.

This. Glad things are going so well for you. :thumb:

Glad to hear your children are doing as well as they are doing.

Beautiful girls, and glad to hear things are going well. I absolutely cannot imagine twins. My wife and I had our first son 4 months ago, and one is exhausting. 2 seems... well, I don't even know what it seems. So glad to hear they are doing well, and it sounds like you have a real fighter in Hailey.

Nice family, Congrats. WB.

Both of those girls are absolutely ADORABLE.

I am so happy to hear they are doing very well.

Keep fighting the good fight - I hope you get to rest at some point.

That third pic is priceless. Your statement is well put. Bravo

Quote:

Originally Posted by doomy3 (Post 9298628)

Got friends who had quints. One is hard enough. Two is probably 10x as difficult. Quints would be mind-blowing.

****ing awesome. It's true that you never know real love until you have kids. That shit ends up being times a million when your kids have to go through something like this.

I hear you on the twins thing. It gets old after the sixth time.

Quote:

Originally Posted by Phobia (Post 9298684)

Got friends who had quints. One is hard enough. Two is probably 10x as difficult. Quints would be mind-blowing.

Quints? Are they beagles?

I'm glad to hear everything is going well for you and your family, man. I missed you in your absence, but I knew you were tending to something of higher importance.

Best of luck for the future, Hamas.

Here's the good thing about having twins first: you don't know any other way. I was never around kids growing up, so my first experience with babies was having two of them. I think that having a single baby first then two might be tougher, simply because you are used to the experience of only having one.

Plus, we are very fortunate that they are good sleepers. Both sleep through the night. They go down about 9 at night and sleep right through. I have friends with kids who won't go down; I think I'd claw my eyes out if that happened.

All my kids have always slept. The new son... 4-5 hours max, usually 3. He'll be 6 months in a couple weeks so hopefully that will change things.

Congrats, Hamas! I'm glad your girls are doing so well. Beautiful pics!

Quote:

Originally Posted by Phobia (Post 9298860)

All my kids have always slept. The new son... 4-5 hours max, usually 3. He'll be 6 months in a couple weeks so hopefully that will change things.

I'm the Sleep Whisperer. My little girl wouldn't sleep more than 90 minutes, in the swing and not the crib, no less, when my wife's maternity leave was over.

Dad here had her sleeping in the crib on Day One of his watch. Six hours the first day, eight the next and so on. I've had her sleeping through the night since mid-November.

The key for her was the extremely loud white noise cranked through a Bose iPad station (same as we did for my older daughter) and a dark room. I watch her on a monitor during the day and evening (watching her right now) and if she cries, I take her out of the crib and "soothe" her by holding her in the rocking chair. After a few minutes, she's usually back to sleep.

Now that we have a pattern established, it's awesome, although it will definitely change. I've really enjoyed my two months with her (Dad's Paternity Leave) and will miss her when I begin working full-time again next month. But at least I'm fortunate enough to work at home.

Drop me a line if you'd like the White Noise file. I've extended it to five hours and have the iPod set to repeat.

Great to hear that your kids have a great father...they are lucky.

:clap: Great post. Glad things are going well, Welcome back.

It sounds like you and your wife are incredible parents. Your kids are lucky to have you.

Quote:

Originally Posted by Mr_Tomahawk (Post 9298148)

Some threads just make you smile when you read them.

Thank you.

Read through the post and got to the pictures.....didn't even realize I was smiling. lol.

Congrats to heard the kids are doing well. It takes special people to deal with what you have been thru so far and what is to come.

Beautiful kids. I love the bottom picture of them.

Quote:

Originally Posted by 'Hamas' Jenkins (Post 9298850)

this is all very true. my wife and i were both 18 when we had our twins. sometimes i feel that we all kinda grew up together.

to this day, when they get together w/their friends(they're 32) they are still both called "twin". it's been that way all their life. little bastards still call me on the phone and don't tell me who they are, trying to make me guess.

all the so called hassles, are very much worth it. makes you a much better person without you even knowing it.

best of luck hamas, and thanks for the update.
sec

Thanks for the update, great news!

Mr Hamas....you brightened my day!

Thanks for the update....what cute little girls!

You should be proud!

Cute kids :thumb:

Your going have double the trouble when they become teens. Good luck with that.

I'd start now learning how to be a teen dad. HOLYSHITBALLS it's a challenge to have one..

I can't imagine having twin teen girls. Watch out for the manipulation they will pull on you.

Hamas my son is now a year old but was born 3 months premature. He was 1lb4oz. My wife and I lived in the NICU for 3 months. I understand a lot of what you and yours have gone through. Happy to hear your family is growing and I wish you all continued best.

Hamas,

Is the baclofen given by indwelling pump? How severe is the CP aspect? I love watching kids make those little breakthroughs. You're courageous. And so is your wife.

All the best,

Will

Good luck to you and your girls, Hamas. Glad to have you back and glad the update was as positive as it was.

Cute kids for such an ugly mother****er...

Thanks for reminding usall what is really most important. Peace and blessings to you and your family.

Quote:

Originally Posted by WilliamInnerCircle (Post 9299935)

Hamas,

Is the baclofen given by indwelling pump? How severe is the CP aspect? I love watching kids make those little breakthroughs. You're courageous. And so is your wife.

All the best,

Will

It is not an intrathecal pump. I would be very hesitant to use one, as their malfunctions can have devastating consequences. We give her an oral suspension three times per day.

As far as the CP goes, the best answer is that I'm not certain yet. The tone in her trunk is much improved. Her tightest muscles, by far, are her adductors. She still has excellent range in them; in fact, if I stretch her legs she can do the splits horizontally. However, she only has about ten degrees of extension before tone in her adductors kick in.

I think she has a touch of spasticity in her left arm, but she still uses it to eat, hold cups, play with toys, and manipulate objects, but there is a definite preference.

I don't know if you're familiar with Gross Motor Classification or not. I asked our PT where she'd fall on the range. At her age it's hard to tell, but her goal is for her to walk with minimal assistance, perhaps just orthotics in her shoes.

Long term, I wouldn't be opposed to considering a dorsal rhizotomy, but that will be part of a larger cost benefit analysis.

We've talked about potential Botox injections for her adductors, but haven't reached consensus on that either.