Delays-Schmelays

Owen has had several development assessments over the last month.  Early intervention did their annual review and updated his HELP assessment.  He met with a Physical Medicine and Rehabilitation doctor for the first time.  He had a speech evaluation (PLS-5 tool) to kick off Speech Therapy.  And, on Friday he had a NICU Follow Up Appointment where they administered the Bayley assessment.

It doesn’t matter which assessment or type of health professional you ask.  Owen is developmentally at the 10-12 month-old-level.  He was born 20.5 months ago and his due date was 17 months ago (we stop correcting in April).  Clearly, his development is behind his birth date.

Many people would look at these scores and be devastated.  We are not.

We are thrilled.

The progress Owen has made since his first birthday has been amazing to watch.  At one-year-old, he was like a limp noodle.  When I held him, it was like holding a newborn, he supported none of his weight and sunk into my chest.  He could only bear weight for a second or two in his arms and legs and he could not roll over in either direction.  Owen was also, essentially, mute.  His cry was barely audible and the only other sound we ever heard from him was wheezing when he struggled to breathe.

Had we given these same assessments to him on his first birthday, by my best estimates, he’d have scored at the 0-2 months level for language, probably 2-3 month for gross motor and maybe 3-4 months for fine motor skills.

Now, put those scores into this context.  He was born 15 weeks 2 days too early and he spent a total of almost 8 months in the hospital.  Maybe even more important than those two facts was his breathing.  A typical infant respiratory rate is up to 44 breaths a minute, but after 6 months of age, most take 25-30 breaths a minute.  (Adults take 8-16 breaths a minute.)  In the first year of his life, Owen’s respiratory rate was nearly never below 50 breaths a minute and most of the time 60-70 or more breaths a minute.  Try that for a minute – a breath each second.  As you do it, try doing (let alone learning) a motor activity.  Or, try talking, or even babbling, through a breath each second.  It’s nearly impossible to do.  Owen was not physically able to do much more than breathe and it took a lot of assistance to do that.

Yes, he was born 20.5 months ago, but he did not start to develop until 7-8 months ago when he was physically healthy enough to work on development.  Do you know what that means?

In my mind, Owen is an overachiever.

He’s been developing for 7-8 months and he is at the 10-12 month-old-level.  And he’s done all that with a brain injury, crossed eyes, excessive abdominal scarring and tightness, an oxygen cord constantly in his way and lungs that can’t fully expand.

Yep, I said it: Delays-Schmelays.  My kid is a rock star.

A very busy rock star.

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He’s also exactly, what CurePity is about.  Have you signed the pledge?

90 Day Physical Therapy Goals

I’m back from a wonderful vacation, feeling refreshed and breathing easier. I spent the weekend with two of my college roommates doing a whole lot of eating, talking and relaxing in Vail, Colorado. Even with the rain today, it was just what I needed. I, of course, missed the boys terribly, but am a firm believer that you can’t take care of others if you don’t take care of yourself.

Unfortunately, one of my concerns from Friday did come true – Kyle got sick and spent 2 of the 3 days mostly in bed. Grandma Sandy was a trooper and handled the boys on her own. I know she must be exhausted, its tiring for me and I don’t have to think too much about what I’m doing, so I have a feeling she’ll be happy to be back home this morning.

We’re starting off the normal week on big note. Owen finally has his feeding evaluation Tuesday (today) morning. Hopefully it goes well and we get a good plan towards helping him orally eat. We also see Pulmonary Thursday. Due to his recent Prednisone (steroid) course, I’m not expecting any changes but this is when we will discuss the plan for keeping Owen healthy through the winter. Who knows, maybe she’ll say that we don’t have to go into hiding until October, versus September? At least that’s my dream. I’ll keep you posted on both outcomes.

One place that we do have a plan is in Owen’s Gross Motor skills (large muscle activities like; sitting, standing, crawling, walking, jumping). Owen had his evaluation on August 2 and from that, his therapist recommended goals that will stretch Owen but, with health and practice, should be achievable. Here are the agreed on goals:

Official Diagnosis: Gross Motor Delay and Muscle Weakness (currently at 6-7 month old age equivalent)

2 Month Goals:
1) Crawl Five Feet on all fours
2) Side Sitting (supported on hands or elbows) as a precursor to be able to transition from sitting to laying on stomach.

2.5 Month Goal: Transition from sitting to all fours

3 Month Goal: Pull to stand from kneeling

These goals have my heart a-flutter. When I have to baby proof my house will be a big day!

What is Periventricular Leukomalacia (PVL)?

I’ve mentioned both in this ANRC blog and CaringBridge that Owen has a form of brain damage that is a risk for babies born as early as he.  I’ve never spent a lot of time describing it for a few reasons.  1) We needed to come to terms with it.  2)  It often seems to me that scientist know more about Jupiter than the brain, so it’s not easy to explain.  3)  Knowing what it is doesn’t give a ton of insight into what it means to Owen.

However, implications are slowly coming to light – especially with his eyes – and so I figured its a good time to put a name and brief description to the brain injury that Owen has and why it affects some of the medical and developmental decisions we make for him.  As is the case with all medical information on this blog, remember, I’m a mom, not a doctor.  I do my best to convey the information, as I understand it.  I’ve included links to some sites on PVL so anyone with further desire to learn can get it from the true experts.

What is Periventricular leukomalacia (PVL)?  PVL is an injury to the inner part of the brain that transmits information from one part of the brain to another.

This image from the University of Maryland Medical Center website shows the area of the brain that is injured with PVL

What causes PVL?  PVL is most common in premature infants.  Those especially at risk are born before 32 weeks, weigh less than 1500 grams (3.3 lbs), are very ill due to infection at or near birth and require PDA surgery.  Basically the smaller and sicker you are, the greater your risk for PVL.  For reference – Owen was born at 24 weeks, 5 days, weighed 800 grams, had multiple infections, including one extremely bad in CMV and had PDA surgery at 8 days old.

What are the outcomes of PVL?  PVL outcomes depend on the extent of the damage and specifically where the damage is.  PVL can occur on one or both sides of the brain.  PVL with Cysts (truly dead, not just damaged areas) is more advanced injury.  The greatest risks are Cerebral Palsy and/or Developmental delays, vision and hearing disturbances, mental retardation, learning difficulties, epilepsy and behavior problems.  Every child is different in terms of how well they are able to compensate for the damaged areas and early intervention through physical, occupation and speech therapies is essential in helping the child reach their maximum potential.  Some children with PVL are only developmentally delayed and eventually “catch up” while others are physically and mentally impaired for life – the variation is great.

To what extent is Owen’s PVL?  Owen has bi-lateral (both sides) PVL with cysts.  The area of damage is relatively contained.

What are the expectations for Owen’s abilities in regards to his PVL?  I’ll refer you to the Known Unknown post for the best answer to this question, but essentially his eyes are the first confirmed issue due to PVL.  We also know that Owen has significant development delays – especially in gross motor and language skills, but that could just as easily be explained by the extent of trauma and illness that he faced in his first year.  Owen’s development is tracked very closely by many doctors, therapists, a special education teacher from the school district and, most closely, by Kyle and me.  With each day and every skill that Owen masters, I get more optimistic.

If you’re interested in learning more, below are some of the resources I found most helpful in understanding Owen’s diagnosis.  The below are summaries, but I’ve also spent a lot of time reading research in medical journals. If you are a parent of a child who has PVL and would like to learn more about how to get to those articles, feel free to contact me.  If you’re wondering how to cope with the new of PVL, I’ve shared our story here.

Emedicine, Medscape Reference

National Institute of Neurological Disorders and Stroke

CP Parent 

Children’s Hospital Boston