I'm Not Just a Mom

In Summary

2011-05-31T23:59:00.001-06:00

It has been a busy month of Streaking, but I am so glad I did it. My original intent was to record our history and spread awareness, but I'm thrilled to have raised some money as well. I appreciate those who donated. (It's not too late...click here to contribute!)

Earlier today, Robbie's physical therapist was here for a visit, and we had an interesting conversation. She made a comment about what a proactive parent I was, and how I didn't seem scared or overwhelmed by the whole process--we moved last year, so she wasn't familiar with my experiences during the first year of Robbie's diagnosis and therapy. She was shocked as I described to her what my feelings were a couple years ago--confusion, intimidation, depression, etc. It was gratifying to realize that most of those things have changed in time.

The two and a half years has not been something that I would necessarily want to do again, but I am extremely grateful for the experience.

--
Streaking, Day 31

Best Brothers

2011-05-31T23:58:00.001-06:00

With all the blogging about Robbie this month, I don't want to leave out his brothers. From hospital notes and visits, to daily prayers (that continue to this day), to cheers for each accomplishment, Robbie's brothers have been his best supporters and his best friends.

I kept waiting for the day when they would tire of it all, but they have literally never showed signs of resentment, jealousy, or frustration toward Robbie. Individually and collectively, he is their best friend. They truly have exemplified pure love for him.

(They've also had lots of fun accomplishments and milestones of their own, which I look forward to writing more about...)

--
Streaking for Pediatric Stroke, Day 31

One Day Left

2011-05-30T23:59:00.000-06:00

Only one more day of Streaking for Pediatric Stroke. If you were planning to donate, now is time!

Catharsis

2011-05-29T22:49:00.001-06:00

As I've explained, I discovered the CHASA and HemiKids sites while searching online for activities to encourage Robbie to use both hands. I certainly wasn't looking for a support group at the time, nor did I realize that I needed one. I joined HemiKids ( an "email discussion group where parents of infants and children who have mild to moderate hemiplegia or hemiplegic cerebral palsy share information") and began to get daily emails from others like me--some whose children had just been diagnosed, others who had grown children, and even some young adults with hemiplegia who would post about their life experiences.

It took a few months for me to work up the courage to post a message to the group. I spent days composing my introduction in my head, then hours on the computer getting it just right. You see, it wasn't just that I was introducing myself to the other people in the group. The moment I hit send was the moment when I accepted the reality of Robbie's situation, and the impact that it would have on his life and mine.

Here is what I wrote:

Hi Everyone

I'm finally ready to introduce myself. I have been reading the digests for a few months now, and have been so encouraged, uplifted and inspired by you all! At first I was a bit nervous to write, just because of being new; now I'm just nervous because I have so much to say, I'm not sure where to start. So, here goes... My name is Nancy Clark, my husband is Chris. Our son Robbie has hemiparesis on his right side due to a brain bleed (Grade 4 IVH) associated with premature birth.

Premature Birth

Robbie was born at 29 weeks--an emergency C-Section due to preeclampsia. (There is a whole story about me driving myself to the hospital, since my husband was across the country taking our kids to my family reunion while I was on bedrest--but I'll spare you the details.) Within the first few days of Robbie's life, a routine ultrasound revealed his severe brain bleed; we were given worse-case scenarios which seemed devastating, but had no idea what to actually expect. The next 3 months Robbie spent in the NICU--his main struggles were breathing and eating. My main struggles were splitting time between Robbie and my other 3 boys (now 8, 5, and 3), teaching Robbie how to eat (2 full months of daily unsuccessful breastfeeding attempts), and learning to advocate for him. Long story short, Robbie went home able to breastfeed (miracle) and needing oxygen (no longer an issue).

Discovery

Once Robbie got home, I was surprised to find that I needed time to "recover" from the whole ordeal; it took months for me to feel rested, back-to-normal, up-to-speed. By the time Robbie was 6 months old (3 months, adjusted for prematurity) we started noticing that his right arm wasn't doing a lot. Luckily, Robbie sees specialists every 6 months as part of a Neonatal follow-up program, so we were immediately referred to our local Early Intervention office. It took a couple months for them to connect with us (oh, how I wish I could go back and call their office and pester them on a daily basis), but we finally had Robbie assessed, set up his plans, and he started with occupational therapy twice a month.

Diagnosis

It never dawned on me to ask anyone what Robbie's condition was called. We would just say, "he doesn't use his arm and hand very well." Our pediatrician would follow-up and ask about the "weakness" in his arm. Finally one day I asked the OT, and she taught me the word hemiparesis. Even at our next Neonatal follow-up appointment, a specialist said something like, "You're going to hear words like hemiparesis and hemiplegia, but that doesn't matter. All that matters is who he is and what he can do." Maybe she was trying to help us not feel labeled or sad, but I would have liked a more straight-forward explanation. If nothing else, I would have found this great support group much sooner!

Denial?

Of course I didn't realize it at the time, but I now see that I have spent the last year or so in some level of denial. For a while I though we would just get Robbie some help and after a few months he'd be just fine. I just thought we needed to teach him how to use his hand better, to get it to "catch up" to his other hand. Once we started OT, I found out that the fine-motor skills were the smallest concern at that point; I hadn't even considered the effect this would have on crawling, walking, etc. Another problem I had was setting aside time to work with Robbie. My husband has always been the one to worry more about milestones and help our kids play and learn motor skills (I liked to say that I would keep them fed and alive and he could worry about the rolling, crawling, etc.). Early on, I always scheduled Robbie's OT appointments when my husband could be there, since I figured he would be the one incorporating these new skills when he came home at night and had time to play. I also struggled with feeling intimidated during OT appointments. I would get nervous to report on our progress or try to do things with Robbie in front of the therapist.

Resolve

Over the last couple months--in large part due to reading these hemi-kids messages--I have made great strides in understanding what I need to do for Robbie. I can't sit and wait for a doctor or therapist to tell me what Robbie's next step should be or what specialists we should be seekingout. I can't expect that my husband can give Robbie all of the help and training he needs in their limited evening and weekend play sessions. I can't expect that things will just happen or just suddenly get better. I have to be his advocate; I have to be the expert. I have to do it.

So, that's who I am and where I am. Right now Robbie and I are working on his crawl position to build up arm strength (so far he can roll and he can just barely army crawl). We are also working on grasp-release with his right hand (he'll use it if we make him). I have a lot of questions. I need to ask them more with the doctors and specialists, and I need to start asking more here. I feel blessed and thrilled to be a part of this group!

Thanks,
Nancy Clark

(posted to the HemiKids email discussion group a little over a year ago, when Robbie was almost one and a half)

--
Streaking for Pediatric Stroke, Day 29

Toys to Encourage Two-Handed Play

2011-05-28T23:59:00.000-06:00

When we first noticed that Robbie didn't use his right hand much, we of course were anxious to find ways to encourage him to use it more. I am always on the hunt for toys that require the use of two hands. It gets pretty tricky, because even if a toy is designed for two handed play, a child with hemiplegia can get pretty good at finding other ways to use it (using teeth, feet, other parts of their body or the floor as one "hand" while their unaffected hand operates it).

One day I looked over at Robbie (1.5 yrs old), and found him playing with a hair tie that had a pom-pom on each end. This was the first time I had seen him use both hands together spontaneously; I literally cannot describe the joy I felt in that moment. Interestingly, the hair tie had showed up randomly at our house only days before--I think one of the boys discovered it on the playground at school. I feel a little bad for the poor girl who lost her hair tie. If only she could know what an amazing little toy it was for Robbie for a few weeks.

When Robbie was just over a year old, I was searching online for two-handed toys, and found CHASA--Children's Hemiplegia and Stroke Association, and their hand play page. That, as they say, was the beginning of a beautiful friendship. I finally found resources, links, and most importantly an online support group (HemiKids) that has helped me through every subsequent step of the way.

Here are some of our favorite two-handed activities and toys:

Patty Cake: Robbie can't play it perfectly--in fact, when we first started playing he would hold just one hand up, then progressed to two hands, but his affected hand would only stay up for about one mention of the word patty cake. He can now play with two hands, and even attempts rolling, tracing the letter on his hand, and putting both hands in the air (the affected hand can't reach all the way up).
Peek-A-Boo: Robbie still cannot rotate his affected arm enough to put his arm flat and over his eyes, but he tries hard and can usually manage to cover it with a fist.
Baby Connects: Robbie got these for Christmas when he was just over a year old. It was a bit early for them, and for at least a year they only got played with by his brothers. He finally got to a point where he could take them apart, and now--with a lot of effort--he can put them together.
Small toys hidden in Play-doh: it takes quite a bit of effort to pull them out.
Monkeys in a Barrell: After a lot of practice (when he was over two years old), Robbie learned to hold the monkey barrell with his unaffected hand and use his affected hand to pick up a monkey and hang it from a suspended chain. He can then continue to place monkeys one after the other. This is an extremely difficult activity for Robbie, as he has to work very hard to keep hold of the barrel while he grasps and releases the monkeys with the other hand (the affected hand often unconsciously mirrros the unaffected hand, so it takes a lot of concentration to have them operate independently).
Tambourine: This is the first instrument I've seen Robbie play correctly!
Stickers: As a quiet activity during church, I often put a sticker on Robbies unaffected hand, then he has to work hard to remove it with his affected hans. It is very difficult. Before he was able to do it, we just put the stickers on his affected hand, so he would have to hold it up for his unaffected hand to be able to reach the sticker.
White Board Markers: I loosen the lid for him, then he uses both hands to take off the lid. I'm pretty surprised that he hasn't yet realized he could use his teeth for this
(See the CHASA hand play page for more ideas)

Streaking for Pediatric Stroke, Day 28

It Takes Two

2011-05-27T07:14:00.000-06:00

In our marriage, Chris is typically more of a worrier than I am. He spends enough time thinking and worrying that I have been able to make a conscious decision not to worry about many things, because I can be confident that Chris is doing more than enough worrying for the two of us.

I have often told Chris that he is wrong to worry, that he is wasting his energy and that worrying doesn't help anything. When it comes to our children, he spends a lot of time watching and worrying about their development. I have a vivid memory of a day when Tommy (our first baby) was 4 months old. We were at a Christmas activity at church; Chris noticed a baby nearby who was within one or two days of Tommy's age. The thing that caught Chris's eye was that this particular baby was holding his mom's hands and standing on her lap.

"Nancy, look at that. That baby is putting weight on his legs and standing. Here, try doing that with Tommy. Tommy can't do that. That baby is the same age as Tommy. Should Tommy be able to do that? Why can't Tommy do that? Are we supposed to be practicing that with Tommy? How is that baby doing that? What should we do to get Tommy to do that? Here, keep trying to get Tommy to do that..." You get the idea. I tried to calmly explain to Chris that it's ok if babies aren't doing the exact same things at the same time, and that all we needed to worry about was whether or not our baby was hitting milestones in a certain order. (And now, can I please watch the Christmas program in peace?)

Well, when we found out about Robbie's brain bleed, again Chris became the top worrier. I gave him a little more latitude to worry, since I could agree that there was now a cause for concern. However, I got frustrated when Chris would make statements about Robbie's future, as if it were a done deal that he would live with us his entire life, or that he would never walk or talk or feed himself. (These were indeed possibilities, but Chris started worrying about them immediately--months before we saw any signs of actual symptoms--whereas I decided not to worry about anything until we actually knew what there was to worry about.)

So when Robbie got a bit older (6 months, 3 months adjusted for prematurity) who do you think noticed that he wasn't using his right side very much? And who do you think said stop being such a worrier, it's probably no big deal. Yep. Chris caught it early. And made sure we asked the doctors about it. And they confirmed it. And we started getting help for Robbie right away, which made a huge difference.

Streaking for Pediatric Stroke, Day 27

Best of Both Worlds?

2011-05-26T06:05:00.000-06:00

Today was a meeting with representatives from the local Early Intervention (EI) office AND the local school district. The purpose of the meeting was to discuss Robbie's (possible) transition from EI to the school district. EI provides therapies and special services (Robbie has in-home appts for physical and occupational therapy) until age 3 , at which point the child is assessed and, if determined eligible, their special needs are addressed by the school district through "by-appointment" therapy at a local school, or possibly admittance to a special needs preschool class.

I find myself hoping Robbie makes it into the preschool. Of course I would prefer for him to not have severe enough needs to merit additional programs: however, if he is borderline, I hope he gets in and can benefit from the program.

--
Streaking for Pediatric Stroke, Day 27

I Wanna Walk, I Wanna Walk

2011-05-25T23:47:00.000-06:00

We flew home today. It wasn't quite as eventful as last week's flight; however, it would have been a good idea for me to check the battery status on the dvd player and computer before promising the kids we could watch a movie. (And apparently, it also would have been a good idea to use the correct outlet when charging these devices last night--it seems I used the outlet that turns on and off with the light switch). Thank goodness I had been given a couple of Grandma's famous grab bags to keep the boys occupied. Snap bracelets and silly bands were the favorite items (and incidentally, also great activities to encourage Robbie to use both hands).

Robbie was so cute as we were deboarded the plane. He asked to walk, and it was so cute to see him make his way up the aisle. I would have loved to snap a photo or video, but wouldn't you know it, my hands were kinda full at that point.

Robbie asks to walk more often than any of my other kids did at his age. Whenever we are pulling the van into a parking space, Robbie starts saying, "I wanna walk, I wanna walk." It's as if he recognizes what an accomplishment it is. I'm pretty happy about it as well, so I've been able to train myself to ditch the stroller/cart (when I can), and have Robbie walk beside me, even if it means we move at a slow pace and get sidetracked along the way.

[We're working on stairs now, and unfortunately that is a different story. Robbie used to be pretty gung-ho to try them--with lots of hand-holding and help, but now as soon as he gets near stairs he asks "carry me" or "hold me." ]

Streaking, Day 25

The Party Line

2011-05-24T23:53:00.001-06:00

This is not so much an issue now, but when Robbie was in the NICU, and later when we started noticing his impaired motor skills, Chris and I had to learn how to "spin" the story. When people asked, "how's the baby?" or later "wow, isn't it amazing that he has no problems now?" (not realizing that indeed he did), we needed to be able to respond to these questions in a way that not only informed people of Robbie's status, but also gave them and idea of how we were feeling about things, and what kind of response we were looking for.

During the NICU period especially, it seemed like people tried to help us feel encouraged, cheered up, and hopeful. Although these are good and important feelings, I longed for opportunities to share my difficulties and concerns. I didn't always need someone to tell me about their relative who had a preemie that turned out perfect. I wanted to talk about the brain bleed, and the heaviness of wondering what the future might hold. I often just needed someone to say, "Wow, that sounds terrible. That must be so hard."

This is not a complaint against people for saying the wrong things. We came to realize that it was impossible for friends and acquaintances to know what we needed to hear unless we told them. Other people in our situation might have needed a lot of cheering up, and could have been devastated had their friends said, "that sounds so terrible." On the other hand, I was already pretty good at being optimistic (at least outwardly); the good attitude served me well (i.e., helped me survive the crisis) but it didn't always help me get the kind of help I needed from people.

I remember a time when I explained to a friend that Robbie was having difficulty learning to breathe and eat in the NICU; I was shocked when she responded "that's great!"--maybe my tone didn't sound grave enough or I ended my explanation on a positive note and that's all she took away from it? Chris and I often talked about ways to word things more clearly; we would actually plan out phrases that communicated the specific message (and emotions) we wanted people to hear.. Instead of saying, "he's doing ok, but he will still be in the hospital for a while" we could say, "well, he is finally gaining some weight, but he is still having a lot of trouble breathing and the doctors don't really know why." OR "We're excited that he's finally in an open crib, but we're really concerned about some lab results we got yesterday," OR "Yeah, he's come a long way since being out of the NICU, but he does have some significant issues that require a lot of physical therapy, so it's still been pretty challenging."

So now when people ask, I can say:

Robbie is doing fairly well, especially considering the prognosis we got after hearing he had bleeding in his brain. He has been diagnosed with Hemiplegic Cerebral Palsy--a weakness in one side of his body, which means he'll always have significant difficulty using his right arm, hand, leg, and foot. We were lucky to get it diagnosed early and have had the support of specialists and therapists, but it has been a lot of work, and it will continue to be a challenge for him throughout his life. But we're pretty thrilled about his progress.

Notice I'm ok with ending on a positive note at this point.. Things aren't as difficult now, and that's a good thing.

--
Streaking for Pediatric Stroke, Day 24

On Again Off Again

2011-05-23T23:11:00.000-06:00

Today I was in a hurry so I put Robbie in the car without shoes on, but grabbed his socks, DAFOs, and shoes so we could put them on once we arrived at our destination.

We were meeting my mom at a rec center so she and I could go to a water aerobics class. When I got there (late, after my 3rd missed exit in as many days!) I hurried and put Robbie's socks, DAFOs, and shoes on. When we took him into the daycare area, they told us that he would need to take his shoes off, since they had some play equipment that could be damaged by shoes. So, I took the shoes and DAFOs off.

I was pretty annoyed, but once again I felt better remembering that we are lucky he can still walk and play in bare feet or socks.

I'll try to keep the optimistic point of view, but I will say for the record that sometimes it would be nice to just slip a pair of sandals or flip-flops on those cute little feet!

NOTE: It's not too late--I still have money to donate! Just leave a comment on yesterday's post telling about an activity you and/or your family will do to join in my streak (for one day or a few days) and for each person that participates I will donate a dollar! Or click below to make your own donation.

--
Streaking for Pediatric Stroke, Day 23

C'mon... You Know You Wanna Streak with Me!

2011-05-22T21:49:00.000-06:00

Read on to find out how you can start streaking, and I'll be the one to make the donation!

A little over a week left in my Streak for Pediatric Stroke, where I am blogging daily about my son's Hemiplegic Cerebral Palsy as part of an awareness and fundraising campaing for CHASA--Children's Hemiplegia and Stroke Association. I am still a few hundred dollars away from my goal. Quite a few of you have mentioned that you plan to donate, so be sure to click here and make your donation. Remember, your money doesn't go to me, but to a CHASA--a nonprofit group that helps parents like me!

Streak With Me!

I am planning to make my own donation to CHASA, but I need your help! I will donate $1 for anyone who participates in their own streak this week. Choose something that you want to do for a week (or even just something you want to do once) and tell me about it in the comments below.

Some Streaking Suggestions

Go walking every day
Write a letter or journal entry every day
Try an activity with ONE hand: eat a meal, play a game, draw, etc. with one hand only (it may help to put a sock on the hand that you don't want to use).
Eat an extra serving of fruits or veggies every day
Do an act of service for someone each day

These suggestions are just to get you thinking; choose whatever you want and tell me about it in your comment. Have your children streak with you or come up with their own streaking activity. I will donate $1 for each person (including children) who comments below about plans to streak.

In your comment, be sure to tell me how many people are participating and what you are doing. I will make my donation based on the number of commitments made below. You will not be required to report back, but I will have a post next week where you can comment about your experiences!

If you feel like it, you can write about your streaking plans on your own blog or on Facebook/Twitter, and link to my Streaking Page.

Happy Streaking!

--
Streaking, Day 22

"Where Every Child Can Play"

2011-05-21T21:14:00.000-06:00

We had a great time at Clemyjontri Playground today--please don't ask me to pronounce it. The playground is designed so that "children with and without disabilities can play side-by-side sharing the fun, excitement and thrills in a playground unlike any other in Fairfax County." A more detailed description:

To the casual observer, the playground at Clemyjontri Park looks like an ordinary playground, with swings, slides and play equipment fun to climb on, under and around. A closer look will reveal that some of those swings have high backs for children who need extra support. Instead of standard transfer platforms there are ramps to the elevated play components. Pathways between equipment are wide and colorful, and the ground surfaces are non-slip and porous designed to provide a greater level of access for children.

Robbie can certainly play on other playgrounds, and I wasn't sure it would make that big of a difference to be at a special one like this, but it was very nice. He has a hard time with ladders and large steps, so the ramps and smaller steps were great. Also there were handles in a lot more places than normal, so he had better grips on things as he was climbing, bouncing, and rocking.

Now if only I could find a park with the extra amenities I've always wished to see: shady spots that actually coincide with the park benches, radar tracking for wandering children (our adult to kid ratio today was better than 1:2, but we still had a couple panicky moments), and sunscreen spray booths.

--
Streaking for Pediatric Stroke, Day 21

Meatloaf, Smeatloaf, Double Beatloaf

2011-05-20T23:23:00.000-06:00

At dinner with Grandma and Grandpa, Robbie held up a piece of broccoli with his left (unaffected) hand, then reached his right (affected) hand up and ripped the broccoli in half. He then clasped both hands around the broccoli and squeezed. As it squished between his fingers he said, "look at the broccoli."

Never have I been so thrilled to see one of my boys play with his food. I even made a point to call Chris and tell him about it.

It is uncharacteristic for Robbie to use his right hand spontaneously unless we are working on something in therapy and/or we have held down his left hand. Occasionally there will be a task like taking a lid off of a marker, where there is literally no other way to accomplish it, and Robbie will work hard and use both hands together.

But ripping broccoli into pieces is something I would consider "optional," so it was pretty exciting to see him do it by choice. Even if it meant he wasn't eating his vegetables.s

--
Streaking for Pediatric Stroke, Day 20

Socks Required

2011-05-19T22:50:00.001-06:00

Because when you visit cousins, you have to go to the park. But if it's raining, you have to find an indoor playplace... (click photos to enlarge)

And when you're at an indoor playplace, you gotta take your shoes off. So I snapped a few pics of Robbie's DAFOs--the brand name for his AFOs--Ankle Foot Orthotic braces that go around his feet and legs, then fit inside his shoes; they give his feet and legs stability, since his muscles are so weak.

We used to be worried that Robbie wouldn't be able to play in places where kids are required to take their shoes off, but as it turns out, he does just fine.

--
Streaking, Day 19

Please Bless...

2011-05-18T22:20:00.000-06:00

Despite yesterday's disasters, I am excited to be visiting my sister-in-law (who happens to share my name) while her husband (my brother) is out of town on business. She and her husband have a great deal worked out where they bring someone out to visit whenever he's gone (which will be a lot this year), to make it a bit more fun (and bearable) for her and her kids. I'm having fun, the kids are having fun (their cousins are cute and fun!), and the bonus is that we're also near my parents and another brother/sis-in-law (who have an adorable baby boy). This paragraph has too many parentheses. (Don't you think?)

Today Nancy told me a cute story about something her daughter Naomi said. Before we came, Nancy was telling her kids about Robbie and his condition; she's always good at taking moments like that to teach her children. Well, when it was Naomi's turn to say the prayer that night, apparently she asked for Robbie to be "ok." After the prayer, Nancy explained that Robbie is ok, but that his body is just different. Naomi said something to the effect of, "I know, but I was asking for him to be ok with that."

A pretty good request.

(Nancy, I hope I didn't butcher that story. Feel free to edit/correct)

--
Streaking for Pediatric Stroke, Day 18

Payback

2011-05-17T23:14:00.001-06:00

Chris will never let me forget the time he took all 3 of our children on a plane trip (with a 3 hour layover) to VA to MY family reunion while I stayed home on bedrest (and then actually had Robbie).

So today was my turn. I flew to Virginia with only 2 kids and no layover, so our trip shouldn't have been half as bad, right...?

I woke up this morning planning to pack while the kids played at a friends, but David started puking, so playdates and preschool were out.
I spent $2 on a diaper for Robbie at the airport, since I mistakenly packed all of mine (and the wipes) in my checked luggage.
I had to borrow another diaper from a neighbor on the plane. This diaper change took place in the airplane bathroom where of course I had to squish in with 2 kids and lay Robbie on top of the toilet, and of course that was when the fasten seatbelt light when on because we were hitting severe turbulence. I am not making this up. ("Mommy, it's really bouncy")
Robbie spent the last hour of the plane ride repeating, "Mommy, I'm poopy again"
David spent the last half hour of the plane ride puking.
At least the flight attendant was really helpful and brought me one (1) disintegrating wet paper towel to clean David's shirt and pants and chair and leapster and headphones, and my hands (remember how I packed the baby wipes in the checked luggage?)
Robbie at least stopped talking about being poopy, and instead spent the rest of the flight repeating, "Mommy, David threw up."

Chris, please tell me we're even...

--
Streaking for Pediatric Stroke, Day 17

Better Late Than Never

2011-05-16T00:10:00.000-06:00

The expectation is that a preemie is going to be a bit small, and a bit behind. Until they are two years old, the medical world refers to them by their "adjusted age"--the age they would be had they been born full term. So, when Robbie was 6 months old, his adjusted age was 3 months--he looked like a 3-month-old, and we expected him to hit 3 month milestones.

Well, it just so happened that when he was 6 months old--3 months adjusted--and had been home from the hospital for three months, we started noticing that Robbie didn't use his right hand and arm very much. We brought up our concern with specialists at a neonatal follow-up appointment, and they agreed. The right-sided weakness corresponded with the bleeding on the left side of his brain. We were referred to our local Early Intervention office, and Robbie started receiving Occupational Therapy. We thought someone would just come out and show us how to help him use his arm; little did we know we would first have to work on rolling, then getting into a crawl position--things that required him to learn to use that affected arm, and required us to learn how to teach and work with him.

So Robbie started hitting milestones, but he was very behind--even for his adjusted age.

Robbie, 2

Dates and Milestones

(referring to actual, chronological age--not the adjusted one)

29 weeks: born prematurely (full term is 40 weeks)
6 days old: we find out about the brain bleed
3 months: home from the hospital
6 months: we notice lack of use of right hand
9 months: cognitive (mental) abilities determined to be age appropriate
9 months: starts receiving Occupational Therapy through Early Intervention program
11 months: Rolling
16 months: Commando crawling (his own special style, with limited use of one arm)
17 months: We start using the words "righty" and "lefty" to prompt Robbie to use both hands
18 months: Limited use of right hand when we hold left hand immobile
20 months: Crawling on hands and knees!!
21 months: Crawling up stairs
21 months: Can only say "mama," and not even as a name; just a way to say "I want" Speech is very delayed (at this point we are hoping it is just because of how much he has been focusing on motor skills, rather than an actual speech problem)
22 months: Cruising furniture (sliding feet while standing at a couch)
23 months: Limited use of right hand, when prompted/reminded
2 yrs, 1 month: Standing independently in the middle of a room
2 yrs, 2 months: Uses 5-10 words; working with developmental specialist to encourage more speech.
2 years, 2 months: Can walk a little bit with assistance (holding someone's hands); starts taking a couple steps on his own
2 years, 3 months: Walking independently!! (wearing AFOs--Ankle Foot Orthotics. The brand name is DAFO, so we call them DAFOs)
2 years, 4 months: Occasionally uses right hand spontaneously--without being prompted. Limited use--meaning, we are extremely excited (and it takes a lot of work) for him to pick up a toy and put it in a cup.
2 years, 5 months: Speech suddenly improving rapidly
2.5 years: Can walk without DAFOs (but he still uses them constantly)
2.5 years: No longer requires any specialists for speech. His speech is age appropriate (and very cute!)

I've been looking through a lot of medical records and notes to put this list together. I honestly cannot believe how far Robbie has come. There was a very long period of time when the thought of him maintaining a crawl position for 30 seconds seemed impossible. And we literally did not know if he would walk.

Until he did.

Streaking for Pediatric Stroke, Day 16

Whoa-oh, We're Halfway There..

2011-05-15T23:09:00.002-06:00

Halfway through the month. Halfway to my goal of raising $1000. Thanks so much to those who have donated!

My goals in Streaking for Pediatric Stroke (blogging daily about Robbie and hemiplegia) is to finally document our experience, to help raise awareness, and to raise money for CHASA--Children's Hemiplegia and Stroke Association. CHASA is a non-profit organization that offers "information and support to families of infants, children, and young adults who have hemiplegia or hemiplegic cerebral palsy, often due to perinatal stroke, childhood stroke, or other rare causes."

CHASA was founded by parents of children who survived strokes and subsequently have hemiplegia. The founders are active participants in the organization and support groups. I credit CHASA and their online support group (HemiKids) with giving me the knowledge, support, and strength I have needed to make decisions and advocate for my son.

Read more and/or donate (even just a few dollars) here.

Thanks!

--
Streaking, Day 15

The Doctor Will See You Now

2011-05-14T23:43:00.004-06:00

As I explained yesterday, while Robbie was in the NICU, we didn't have a lot of contact with the doctor who was over the babies there. Until one day when we did...

It was a Thursday, 6 days after Robbie was born. By then I had been home from the hospital for 2 days, still recovering from a C-section, and Chris and I were going to the hospital every day to see Robbie. We were still learning the ropes--what all the machines meant, what questions we should ask at our visits, etc. By now a few things were going well--Robbie was no longer on a ventilator for breathing (although he still required oxygen through a nasal canula). He was able to be fed milk through an NG-tube that was fed through his nose down to his stomach. At this point, this was very good progress, and we were feeling relieved that he was surviving.

When we arrived to see Robbie that day and participate in cares--changing his diaper, etc.--the nurse mentioned that the doctor needed to see us before we left. We finished up what we were doing with Robbie, and had to wait around a bit until the doctor was available. I remember feeling a bit anxious not only about what he needed to tell us, but about the time, as someone was watching our older boys, and we were supposed to be back by a certain time to pick them up. When the doctor was ready, we walked to a small room with the doctor, a nurse practitioner, and a social worker. The room looked like a small conference room and had a white board on the wall.

The doctor began drawing diagrams, and explaining some details about the brain development of a fetus, and how premature birth puts babies at a high risk for brain bleeds. His explanation was detailed and made sense. He talked about an area of the brain called the germinal matrix--an area from which new cells migrate out during brain development. During early brain development this area is very active, and the way the doctor explained it, the cells and vessels are tightly packed--protected even. Toward later brain development, this area will no longer need to exist, so it is not as tightly packed, and is very fragile for a period of weeks--it is during this window of time that there is high risk of bleeding in this area of the brain. And it was during this window of time that Robbie was born. (Robbie was born at 29 weeks gestation. 40 weeks is full term.)

The doctor went on to explain that a brain bleed, or IVH (intraventricular hemorrhage) is classified into one of 4 Grades, according to severity:

Grade I - bleeding occurs just in the germinal matrix.

Grade II - bleeding also occurs inside the ventricles.

Grade III - ventricles are enlarged by the blood.

Grade IV - there is bleeding into the brain tissues around the ventricles.

We were told that with each grade, their was a percentage chance of the baby having long term effects from the bleed. I don't know the exact numbers, but it was something like a Grade 1 bleed had a 25% chance of long term effects, while a Grade IV bleed had a 75% chance. In any case, we were told, the effects would not be known right away, and could range from lack of coordination to learning difficulties, to mental/cognitive deficiencies, to Cerebral Palsy (a term which means different things to different people, including us at that time).

Then the doctor told us that Robbie's brain scan (a standard-for-preemies test performed earlier that day or the day before) had showed that Robbie had had a Grade 4 IVH on the left side of his brain.

Then we sat there. Stunned. Then we asked a few questions. Then we all left the room.

Someone probably should have suggested that Chris and I stay in that room for a few minutes. We walked out, down a long hallway toward the hospital exit; as the tears started to flow, we realized we had nowhere to go. So we sat on a bench in front of the hospital. Then there was nothing to do but regain our composure, get in the car, drive home, and pick up our boys. And wonder...

Streaking for Pediatric Stroke, Day 14

Doctor, Doctor, We Need Help...

2011-05-13T23:30:00.001-06:00

When I had my other babies, during the couple days that the baby and I were still in the hospital, my pediatrician would stop by each day and check on the baby, and let me know how everything was going.

Strangely, with the NICU experience it was days before we came into contact with a doctor that was caring for Robbie. The first couple times we went to the NICU to visit we only saw whatever nurse was assigned to Robbie during that shift. It was such a strange experience--seeing our baby with all these tubes and machines, not really knowing what was going on. All we wanted to know was whether our baby was going to survive, and what was this NICU experience going to be like for us--how long would Robbie be here? would it be a life or death situation every day? should we stay all day, every day with him, or just pop in for a few minutes at a time? should we have our extended family come stay with our other kids now so we could be at the hospital more, or would we need that help even more further down the road...? We would ask the nurses, and they would sometimes have ok answers for us: He would most likely be in the NICU for about 3 months, we would probably need more help from friends/family down the road when Robbie became old enough to breastfeed (requiring Mommy to be at the hospital more often). But we were still always left wondering, "How scared should we be?" We literally had no idea if Robbie was on track to survive or not.

During the 3 days I spent in the hospital recovering (3 floors up from the NICU, where I would visit 1 or 2 x a day), I never had a pediatrician pop in and tell me how Robbie was doing. I did get a phone call from a nurse practitioner once in the middle of the night once asking for my consent for ...a blood transfusion? I think that's what it was; it's still kind of hazy, actually. And again, I was left wondering: Is this normal? Should I be scared?

Well in time we got better at knowing how worried we should be. We had to figure out what questions to ask, and who to ask, and what time of day to be there if we wanted to catch the doctor doing rounds. We learned to read the monitors and machines, and the nurse's notes, and even Robbie. We knew what tests were being done when and we figured out how to call and ask for test results, or just to check in when we weren't there.

...Stay tuned for the next part of the story: The Day the Doctor did Stop by to See us in the NICU.

--
Streaking, Day 13

What Does Cerebral Palsy Mean?

2011-05-12T11:13:00.002-06:00

While we are on the subject of terminology, I want to touch on the term Cerebral Palsy (CP).

Many people have an image in their head of what Cerebral Palsy looks like--for most this image is based on their life experience, and the people they have met that have CP. The term is very broad, though, and the ways it can manifest vary greatly.

One definition of Cerebral Palsy:

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement

Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.

The way I think of it, CP refers to motor impairments caused by damage to the brain around the time of birth. That's a pretty broad umbrella. Which explains why you may know someone with CP who can't talk, another who is in a wheelchair, one who can't hold their head up well, and then someone else who limps and has a fisted hand.

As I explained yesterday, Robbie's condition falls under the umbrella of Hemiplegic Cerebral Palsy. People are often surprised though, to hear the term being applied to him--again, most likely this is due to assumptions about what CP looks like.

--
Streaking for Pediatric Stroke, Day 12

How do You Pronounce Hemiplegia?

2011-05-11T08:08:00.000-06:00

My mom wanted to know how to pronounce hemiplegia

Here is a link to a site that will pronounce it.

Most people are familiar with the term paraplegia--an impairment in motor or sensory function of the lower extremities

Hemiplegia, then refers to paralysis or weakness on one side of the body (meaning left/right side, as opposed to upper/lower half)

Actually, technically hemiplegia may indicate complete paralysis, while hemiparesis refers to a marked weakness. In our experience, we have heard both words used for Robbie's condition, just depending on who we are talking to. He is definitely not completely paralyzed; his right side is just extremely weak. We have seen the term Hemiplegic Cerebral Palsy on his medical records, so as far as I know that is his official diagnosis. It seems like it is often used as an umbrella term for these conditions.

--
Day 11 of Streaking

Poked and Prodded

2011-05-10T17:02:00.000-06:00

Yikes! I completely missed posting yesterday. Let the streaking resume...

Today was Robbie's neonatal follow-up appointment, part of a program sponsored by the State Health Department (I think) for checking on premature babies as they grow up. When he first came home from the hospital he had a follow-up appointment every 3-6 months; now it's yearly. At this appointment he is seen by the following specialists:

nurse/nurse practitioner
pediatrician
neurologist
nutritionist
speech therapist
physical or occupational therapist
child psychologist
hearing specialist
opthalmologist

Fortunately they have a decent waiting room, because we spend the better part of the day in and out of it, while we wait and get called in to meet with each specialist. Unfortunately, today the heat was turned up too high in the waiting room. And we were there from 8am to 1pm (not to mention the two hours of driving to get there and back).

The good news is that at this point the only specialties that have anything "special" (har, har) to do or say is neurology (since Robbie had a brain bleed) and physical/occupational therapy (since his arm and leg are affected). The rest of the specialists just look him over and say that everything looks great, which is thrilling!

Father in Heaven has Sent Me to You

2011-05-08T20:43:00.002-06:00

From a song often sung by children on Mother's Day:

Mother, I love you; Mother, I do.
Father in Heaven has sent me to you..

I have read poems and stories and one-liners about mothers of children with special needs. Sometimes the claim is that the mother has special abilities that qualify her, other times the explanation is that the mother has something she needs to learn through raising this particular child.

I see truth in both of these explanations, but I think these descriptions can be applied to all mothers, not just a certain set. Our children are sent to us by a Father in Heaven. Mothering any child requires us to draw on our strengths as well as improve in areas where we are weak.

--
This post marks day 8 in my Streak. More details here.

Did You Even Know that Children and Babies Have Strokes?

2011-05-07T23:35:00.001-06:00

Today is Childhood Stroke Awareness Day.

Childhood strokes occur at the highest rate in infants who are younger than 1 month old – about 1 in 4,000 live births, (here are some more interesting facts about pediatric stroke)

Robbie didn't have a stroke. He had an IVH (Intraventricular Hemorrhage), aka brain bleed . Basically, stroke describes a situation where blood flow to the brain is interrupted, whereas brain bleed describes blood entering areas of the brain where it shouldn't. In either case, the result is brain injury. Robbie's brain bleed resulted in Hemiplegia (weakness on one side of the body), which is often also a result of pediatric stroke. Slightly different causes, but similar results and diagnoses.

When most people hear reference to a baby or child having a stroke, their first response is, "I didn't know babies could have strokes." That is often also the response of parents when they find out their child has had a stroke. Unfortunately it is not uncommon for parents to be unaware of their baby having a stroke for many months after it happens; it is not until they begin to notice motor deficiencies that would only be obvious once a baby is older. At that point, it depends on how soon they notice, how worried their pediatrician is, how soon they are referred to a specialist, etc. Then suddenly they have an MRI showing major damage to their child's brain--damage that happened before, at, or shortly after birth.

The situation I described above breaks my heart, and I have heard it described over and over by parents in our online support group (HemiKids, sponsored by CHASA--Children's Hemiplegia and Stroke Association). Our experience with Robbie has been difficult, but we were aware from day 1 (ok, day 6, technically) that Robbie had a brain injury; we could watch for the signs; we we referred to specialists early on.

More awareness of pediatric stroke would be a good thing. Parents recognizing signs earlier. Specialists being brought in sooner. More research, more support. I'm happy to play a small part in raising awareness. I hope you will consider visiting my streak page and donating (even just a few dollars!)