Taking on Lucas’s hypotonia (Dec. 14)

Before Lucas was born we had never heard the word “hypotonia”, nor had we ever really contemplated the concept of “low muscle tone”; then, suddenly, it was something we were talking about all the time.  At birth and for the first few weeks of his life Lucas hardly moved at all, and his body was like a rag doll, totally floppy.  In his first few days of life we were told that he likely had a bad infection and that once the antibiotics kicked in he would snap out of it.  But the days passed and we came to realize, along with the doctors, that Lucas’s condition was much more serious than an infection.  In the weeks and months that followed the neonatologists and other specialists performed numerous tests and explored various theories of what might be ailing Lucas, but in the end the only diagnosis they could come up with is the name for his most acute symptom: hypotonia.

Lucas has gotten stronger as he continues to grow (if we haven’t mentioned it, he’s up to 9.5 pounds!)  But as we’ve discovered, muscle strength is very different than muscle tone, and the physical therapists have been persistent in pointing out just how low Lucas’s muscle tone is.  Dan, the physical therapist that comes to our home once a week, gave us perhaps the best simple definition of muscle tone: the normal resting state of muscles.  For Lucas, having low tone means that there’s very little tension in his muscles, and therefore he has to work that much harder to move his arms and legs or hold his head up, among other things.  A longer explanation of muscle tone can be found on this website, and here’s another basic definition taken from Wikipedia:

“True muscle tone is the inherent ability of the muscle to respond to a stretch. For example, if you quickly straighten the flexed elbow of an unsuspecting child with normal tone, the biceps will quickly contract in response (automatic protection against possible injury). When the perceived danger has passed, which the brain figures out really quickly once the stimulus is removed, the muscle then relaxes, and returns to its normal resting state… The child with low tone has muscles that are slow to initiate a muscle contraction, contract very slowly in response to a stimulus, and cannot maintain a contraction for as long as his ‘normal’ peers. Because these low-toned muscles do not fully contract before they again relax (muscle accommodates to the stimulus and so shuts down again), they remain loose and very stretchy, never realizing their full potential of maintaining a muscle contraction over time.”

bathtimeLucas’s low muscle tone is the likely cause of most of the challenges he’s dealing with.  He’s unable to feed orally because the low tone in his face makes it difficult him to hold his chin up and have a strong suck for an extended period of time (he’s also still developing his swallow reflex).  He was unable to breath off the ventilator in his first few months of life – and therefore the necessity of tracheostomy surgery – because the low tone in his upper airway inhibits his ability to keep that airway open.  Even with the trach he needs the ventilator more often than not because his low tone makes for shallower breaths (less ability to fully contract his diaphragm.)  The low tone in his trunk makes it difficult for him to sit upright without braces, even at a 45 degree angle.

Physical and occupational therapy, along with early intervention (speech and language therapy and other forms of developmental support) will hopefully help Lucas a lot in his path forward.  Already we see the results of having worked with some pretty amazing therapists, and we’re applying for early intervention services so that he can continue to receive a variety of therapies, stimuli, and support.  Ultimately we plan to learn all we can about Lucas’s condition and these various therapies so that we can spend lots of time working with him on our own.

It’s likely that the hypotonia is related to the brain hemorrhage that Lucas suffered at birth, though no one knows why Lucas had extensive bleeding – not just in his brain – when he was born.  Yet according to his doctors the grade II and grade III bleeds in his brain usually would not lead to such severe hypotonia, and therefore they kept searching for some other condition or syndrome to attach to Lucas.  In the end none was found, and thus at this point when we’re asked about Lucas’s disability our best answer is that he’s hypotonic.  In fact, he could be said to have Benign Congenital Hypotonia, which is basically a diagnosis of exclusion (incidentally, he has a onesie that says “Stumped the entire medical establishment and proud of it!” which we decided not to put on him in the NICU so the doctors wouldn’t feel bad.)

The good thing, of course, is that Lucas is getting better and not worse.  Were he to have some sort of neuromuscular condition then it would almost certainly be degenerative.  His hypotonia, on the other hand, is associated with the central nervous system, and thus as his brain functions continue to improve and recover from the bleed there’s reason to believe that his low muscle tone will also improve.  The hand-mouth-giraffe coordination he exhibited the other day (see blog entry below) is just one example of that steady improvement.

14th December, 2009 This post was written by admin 4 Comments

Hand/mouth/giraffe coordination (Dec. 12)

giraffeseries

The past couple days have been good ones — lots more of the eating, sleeping, pooping, and wiggling routine. In particular Lucas is exploring his face a lot more. We’ve walked over to his crib a few times to find him vigorously rubbing both hands on face, joyfully smearing his slobber all over. He’s also been feeling and poking his eyes, sometimes a little too enthusiastically. Although he can’t make much noise (because of his trach), he rubs his hands on his face with such gusto it looks like he’d be purring with pleasure if he could.

On Thursday Lucas also figured out how to pull his giraffe to his mouth. With help he can wrap his fingers around its neck, and at first he just held it at arms length and gazed. Then, with a sudden jerk he pulled it toward his face, opened his mouth in anticipation, and bonked himself between the eyes instead. Unfazed by the lack of coordination, he flinched, pulled his arm out away from his face, and tried again. Repeat bonk. On the third try, though, he got the giraffe to his mouth and proceeded to gnaw with pleasure. It was amazing to watch — the great exploration of hand/mouth/delicious-thing coordination. Lucas looked truly proud of himself and happy with the world.

12th December, 2009 This post was written by admin 11 Comments

Ups and downs (Dec. 10)

It’s been 3 weeks now that Lucas has been home with us and in many ways the hospital feels like a distant memory… except when we show up there again, as we did the other day for back-to-back appointments.  The first was with “complex care”, the department that helps tie together all the different specialists that Lucas will be seeing, each with their particular doctors orders and recommendations.  We’ve already seen the GI doctor and in the coming months Lucas will visit the pulmonary doctor, the Ear/Nose/Throat (ENT) surgeon that did his trach surgery, the renal doctor to check on his kidneys and urinary reflux, an ophthalmologist, the neurologists at the brain injury clinic, and finally do a follow-up test on his hearing.  (Oh yeah, and we’ll probably have to visit the genetics department at some point too because supposedly they haven’t “closed the book” on Lucas despite having tested him for just about every disorder imaginable.)  Therefore, we were convinced that having the complex care doc help synthesize everything made sense, and indeed the visit was productive.IMG_3250

The other appointment we had on Tuesday was with the occupational therapist.  Kathy was one of our favorite people to see in the NICU in part because we learned so much from her about Lucas’s challenges and in part because she’s always so darn positive about his progress.  Mostly we like to see her because she’s really good at what she does, and once again she didn’t disappoint.  Lucas spent over an hour wide-awake rolling around on a mat, and Kathy gushed about how far he had come since leaving the hospital.  She concurred with a lot of the suggestions that we’ve gotten from his physical therapist and came up with some new brilliance: Kinesio tape around his torso to help lift up his diaphragm so that he takes deeper breaths.  One of the offshoots of Lucas’s extended hospital stay is that he’s spent a lot of time on his back and thus he has a narrow, rather flat midsection rather than the usual rounded baby torso.  The tape works to compensate for the shallow diaphragm that results from his body shape combined with his early breathing troubles.

We were really excited after the visit with the occupational therapist and happy that Lucas did great spending nearly four hours away from home on Tuesday.  But yesterday was a tough day as emotions and responsibilities seemed to pile up.  Lucas was fine but his parents were stressed out, having trouble dealing with all the follow-up we need to do for his appointments, prescriptions, insurance, not to mention checking in with the home health and equipment rental companies, dealing with a busted kitchen sink, still pumping breast milk five to six times a day, plus doing all the usual stuff that parents do with their babies like changing diapers, giving baths, feeding, washing clothes…

You may remember that the roller coaster metaphor is used frequently when talking about having a baby in the Neonatal ICU.  Although we were extremely focused on our goal of going home for months, we knew that leaving the NICU wouldn’t be the end of our challenges.  Of course being home is not nearly as stressful as the hospital, but the ups and downs continue.  We can go from a great day like Tuesday to a really emotional period without really knowing what happened in between.  A lot of it depends on Lucas and how he’s doing on any particular day, but a lot of it is also about the uncertainty of the future.  Lucas improves and we share each positive development with our community through this blog; and yet in the back of our minds we know that he has never been diagnosed with any underlying condition and so his prognosis remains impossible to know.  IMG_3256Sometimes that fact weighs on us, along with the anxiety of having to be by his side all the time, prepared to suction if his airway suddenly becomes obstructed.

Perhaps Wednesday was also a hard day because we said goodbye to Alice after a full week of good times.  Having good friends and family support us in the way that Alice did over the last week is amazing, and sometimes you don’t realize how important that additional presence is until it’s gone.  We thank Alice for all her help and look forward to having our respective families visit and stay close by in the coming month to continue such support.

10th December, 2009 This post was written by admin 3 Comments

Fun-filled weekend (Dec. 7)

Lucas didn’t get to explore the snow on Saturday, but we did manage to escape outside in shifts. Krista and Alice went out in the morning for some time at the YMCA, and in the afternoon Burke represented the family at the IMG_3243opening of our friend Edmond’s sculpture exhibition (he’s an amazing artist from Burkina Faso who lived with us for a while at our old house and who we had lost contact with after Lucas was born.) Both excursions gave us the chance to be out in the midst of DC’s first winter storm and we told Lucas all about it once we were settled back into our warm basement apartment.  Unfortunately our water heater conked out on Saturday afternoon and we’ve been struggling with getting warm water – or water at all – ever since.

Sunday brought more adventures: a wide awake Lucas spending time on the floor during an extra-long session off the vent, a batch of West African peanut butter soup made by Burke, and trip to the All Souls Unitarian Church for Krista and Alice.  The latter event brought sad news that Shana, a minister and friend who visited us while Lucas was  in the hospital, will be leaving DC and All Souls early next spring.

IMG_3240Later in the day we invited our good friends Sha and Max over and continued playing with an alert Lucas.  He danced with Max, made goo-goo faces at Alice, and all the while sported his snazy “We will not be pacified!” radical baby onesie that Sha silk-screened for Lucas before he was born.  As if reveling in the irony, Lucas sucked on his “chumpy” (as we now refer to the pacifier) all afternoon.

Alice continued her string of scrumptious meals with a mushroom risotto that would have even pleased Burke’s dad (a risotto aficionado).  Meanwhile, Max and Burke worked on upgrading the platform for the CISPES webpage (fun stuff!) and Sha and Krista continued playing with Lucas.  Eventually we all snuggled onto the futon to watch a movie.  Lucas dawned his second “nose” and joined us for a while on the couch before falling asleep after a long day.  Finally, our guests headed home and since we had canceled the night nurse we got to spend another evening sleeping next to Lucas, him in the crib, us on the adjacent futon.

Though we’re still wary of bringing too many people – and potential germs – into our home it was great to be around Lucas AND good friends.  It proves that even though Lucas currently has special needs we can still do a lot with him and continue enjoying the wonders of life, love and community.

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7th December, 2009 This post was written by admin 3 Comments

Snow (Dec. 5)

It snowed in Washington DC today! Lucas still isn’t old enough to be able to see the flakes falling outside the window, but he was wide-eyed for hours gazing alternately at the flying monkeys on his mobile and at his parents. It was wonderful.

The other highlight of the past few days is that our friend Alice is in town from Michigan. She’s been making sure Lucas’s milk is packed full of nutrients by cooking us gourmet pizzas, cookies, and omelets.

5th December, 2009 This post was written by admin 1 Comment

It’s a big world… (Dec. 3)

Lucas keeps growing, which makes us very happy (heck, that’s what healthy babies do: eat, poop, grow… repeat.)  Yesterday we were back at the hospital for an appointment with the gastrointestinal specialist and Lucas tipped the scales at 9 pounds 1 ounce!  Still, he remains a tiny little dude – even as he steadily grows of late Lucas has only recently surpassed the average birth weight for a newborn despite the fact that he’s now 3 1/2 months old.

chumpyThe business of growing is actually pretty tough when you’re saddled with the kind of challenges that Lucas is faced with.  Because of his breathing difficulties he burns up a lot of calories just taking in breaths (remember that his ventilator only provides pressure support and that he spends four or five hours a day off the vent.)  We try to strike a balance between stimulating Lucas to move around and observe the world – which he needs to do in order to overcome his brain injury – and giving him plenty of rest in a relaxed environment.  As the gastrointestinal specialist told us, “he’s got enough going on!”, which is to say that we want to make eating, feeding and growing as easy as possible for Lucas so that he can concentrate on overcoming his other challenges.

Speaking of size, the other day his physical therapist  observed how small the various parts of Lucas’s body are… except his ears!  Lucas took no offense and in fact we take pride in his disproportionately large extremities, not just ears but also fingers and toes.  On the whole his body remains extremely long and at least one of our friends thinks that he may end up being the tallest man in the world.  We checked his proportions after the doctor’s visit yesterday and found his weight to be in the 15th percentile for a low birth weight baby (based on his adjusted age of 1.5 months) and his length to be in the 100th percentile.

Here’s a song about being a little baby in a big world.  We play it a lot for Lucas since it’s good to be reminded that you’ll only be little for a little while.  Thanks to Evan and Aaron for introducing us to this beautiful music (the duo is called “Renee and Jeremy”).

[audio:bigworld.mp3]

And since November has come to a close here’s a slide show of some favorite Lucas shots from the last month…

3rd December, 2009 This post was written by admin 7 Comments

Out for a stroll (Dec. 2)

The big event yesterday was our first real “stroll” with Lucas. IMG_3193We’d taken him outside a number of times – for the pediatrician’s appointment and the concert on the front lawn – but never actually loaded up the stroller and taken a walk just for the sake of it.  That’s in part because “loading up the stroller” is a bit of an ordeal in Lucas’s case. It involves a large, heavy battery, the home vent, a portable suction device, the pulse/oxygenation monitor, and various other small props. But yesterday afternoon it was sunny and beautiful outside so we decided to go for it.

The stroll was a success but also somewhat of a comedy.  Halfway up the ally alarms started blaring and it was unclear whether the signal had gone bad or whether we were going to have to perform an emergency operation just 25 steps from our back gate.  But things stabilized and we proceeded on, only to have the vent fall out of the stroller halfway down the next block, causing more alarms as tubes in the circuit came disconnected.  We got him rolling again, and eventually achieved a full loop around what amounts to a long city block and then back around and down the ally from where we came.  At the end Lucas looked a little pale – he’s not used to temps in the low 50s – but was no worse for the wear.  IMG_3187And we hung out a while longer in the back yard enjoying the crisp fall air before bringing him inside.

Among other recent achievements were some big steps with the physical therapist who comes by our apartment once a week.  He’s a wonderful guy and has already developed a great understanding of Lucas’s challenges over the course of his first couple visits.  He has simple yet thoughtful recommendations for us each time: Lucas should spend more time on his sides so that gravity isn’t working against him as much when he moves his hands and seeks to touch his faceIMG_3177; when he is on his back we should prop his arms up so that he can move them around in front of his face and see his own hands as much as possible; and, we should get him a new trach that will allow him to move and rotate his head more, something that is currently a major struggle.   The best part about the session yesterday with Dan was getting Lucas to grasp a couple of objects and move them around and up to his mouth.  His favorite was the Native American rattle that aunt Megan brought him, which he managed to get both hands around and move up to the point where he could gnaw on the tough, rawhide top.  Whatever floats your boat, little man!

  

Look at me, I can touch my hands together over my head! (with a little help from mom :)

2nd December, 2009 This post was written by admin 2 Comments

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