In Summary

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.

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Streaking, Day 31

Best Brothers

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...)

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Streaking for Pediatric Stroke, Day 31

One Day Left

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

Catharsis

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)

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Streaking for Pediatric Stroke, Day 29

Toys to Encourage Two-Handed Play

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)

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Streaking for Pediatric Stroke, Day 28

It Takes Two

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. 

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Streaking for Pediatric Stroke, Day 27

Best of Both Worlds?

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.

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Streaking for Pediatric Stroke, Day 27