The Requested Life Update

['Hamas' Jenkins]

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)

[WilliamInnerCircle]

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

[patteeu]

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

[Rausch]

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

[Braincase]

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

['Hamas' Jenkins]

Originally Posted by WilliamInnerCircle

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.

['Hamas' Jenkins]

Originally Posted by ncCHIEFfan

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.

Hope your little one is doing well. Daily trips to the NICU can be exhausting, as I'm sure you're familiar with. Our girls came at 29. I'm assuming your son came a few weeks before that?

[scott free]

Man, what a grinder your family has gone through and continue to struggle with... but you definitely sound completely on top of every nuance of it.

All of my very best wishes for continued good fortune

[JASONSAUTO]

Originally Posted by 'Hamas' Jenkins

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.

we went through serial casting and botox injections before.

you probably would not be going through the casting by the sound of it but I will say the botox made quite the difference, for about six months at a time
Posted via Mobile Device

['Hamas' Jenkins]

Originally Posted by JASONSAUTO

we went through serial casting and botox injections before.

you probably would not be going through the casting by the sound of it but I will say the botox made quite the difference, for about six months at a time
Posted via Mobile Device

We do casting, but our PT does it in home rather than an orthotist. We use the casts in shoes when working on cruising, standing, and walking.

[JASONSAUTO]

Solid casts?
Posted via Mobile Device

['Hamas' Jenkins]

Originally Posted by JASONSAUTO

Solid casts?
Posted via Mobile Device

They are solid formed casts that you can slide a foot in an out of because the "tongue" area has been cut out. Covering the edges with padding makes them soft on the feet, and because they are formed when the foot is in an anatomically correct position, it prevents the desire to get onto the toes or roll the ankle inward.

[WilliamInnerCircle]

Originally Posted by 'Hamas' Jenkins

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.

Not familiar with the classifications for gmf. But very familiar with the pumps. When you mentioned baclofen I began to wonder just hope severe the spasticity was.
The rhizometry can help a lot. But you have a few years time to determine that.

All in all, a very solid outcome for the family. Vet happy for you and Mrs Hamas.

[JASONSAUTO]

Originally Posted by 'Hamas' Jenkins

They are solid formed casts that you can slide a foot in an out of because the "tongue" area has been cut out. Covering the edges with padding makes them soft on the feet, and because they are formed when the foot is in an anatomically correct position, it prevents the desire to get onto the toes or roll the ankle inward.

she had those after, prior to those she went through a series of solid casts. It sucked.

we have tried tons of different braces. it's a process lol
Posted via Mobile Device

[Phobia]

Originally Posted by seclark

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

Record length post.

[Jiu Jitsu Jon]

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?

I concur. The Hulk Hogan costume = WIN.