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

'Hamas' Jenkins 01-08-2013 07:43 PM

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. Iím 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 arenít empty words.

First, a PSA: When you take infant twins out in public itís like being an F-list celebrity. Every sixth person you walk by in the mall or at the store says, ďOh look, twins!!Ē 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. Itís not a summative, itís exponential, especially if you are at home by yourself and one or both of them has had a blowout. Thatís not to say itís not worthwhile, but it is ****ing exhausting.

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

Hailey first. As Iím 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 Iíll update you on what has happened since.
She finally got past her issues with retinopathy, but as a result of the laser surgery sheís 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 sheís 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. Itís likely that sheíll 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. Itís hard to pinpoint a childís 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 sheís behind her sister in movement and ambulation. She can crawl, but itís 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 donít currently know.

As a result of her therapy we are the temporary owners of the worldís smallest treadmill, one designed for toddlers. Itís 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. Itís 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 Haileyís issue with muscle tone, it helps me to think of driving over a bridge with a metal frame spanning above the road surface. If youíve ever done so while listening to AM radio youíre familiar with reception loss. Thatís the closest analogue I can think of for her injury. Itís not that she canít send the signal to move and itís 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, sheís made phenomenal progress. I donít like to use words like ďnormalĒ 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 sheíll 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. Sheís 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. Sheís a born climber, and has managed to figure out how to climb on to our coach by using the ottoman as a staging ground. Sheís obsessed with small electronics like our remote control, but fortunately she doesnít 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 ďWhereís your dongle?Ē At that point, sheíd 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 donít have a lot to bitch about. Iíll be honest that I often have pangs of remorse, especially that Iím 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, Iíve 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. Iím not an optimistic person, but I do like to think of myself as pragmatic. Iím 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 wonít face developmental issues or teasing down the road, but I am happy and grateful for where they are at.

Iím also thankful for how many of you have shown interest and affection for two children youíve 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



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Demonpenz 01-08-2013 07:47 PM

epic post.

Mr_Tomahawk 01-08-2013 07:49 PM

Some threads just make you smile when you read them.

Thank you.

ChiTown 01-08-2013 07:50 PM

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

SuperChief 01-08-2013 07:53 PM

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

CrazyPhuD 01-08-2013 07:53 PM

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.

siberian khatru 01-08-2013 07:53 PM

Wow.

Little dusty in here. Hang on ...

Thanks for taking the time to post that.

God bless you.

JASONSAUTO 01-08-2013 07:54 PM

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

KevB 01-08-2013 07:54 PM

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.

Mr. Flopnuts 01-08-2013 07:54 PM

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

JASONSAUTO 01-08-2013 07:55 PM

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

The Bad Guy 01-08-2013 07:57 PM

Gorgeous kids man. Congratulations on their success.

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

stlchiefs 01-08-2013 07:57 PM

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.

'Hamas' Jenkins 01-08-2013 07:58 PM

Quote:

Originally Posted by JASONSAUTO (Post 9298162)
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

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.

DaKCMan AP 01-08-2013 08:00 PM

http://blog.kontera.com/wp-content/u...10/08/like.png


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