AFO Boot

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Once we started PT back in September our therapist told us very early on that she would like Henry to wear an AFO boot. When I first heard this I wasn’t nearly as upset or shocked like I was when his OT told us about casting his right arm for days at a time. Maybe the AFO boot just seems a little less serious, or maybe I have come to terms with these hurdles, or just maybe because I have done my own research it’s less daunting. Henry was 15 months old when he started seeing his PT and she did inform me that she wouldn’t suggest him getting an AFO until he was at least 18 months. The reason being was to let his muscles grow a little more and for him to become a more experienced walker. The type of boot that the PT recommended was a DAFO-3 (see link below).

https://cascadedafo.com/products/dafo-3

Well we had his 18 month checkup back in December and we got a recommendation to a pediatric orthopedic. I called that same day and we have our first appointment on January 11, 2019. I am mixed with emotions. I am so anxious to get the ball rolling, to meet and hear the opinion of the orthopedic, and find out how long it will take to actually get the AFO. I’m excited because I know and feel it is only going to help him. I’m excited to see (over time) his gait improve, to see him learn how to run faster, to prevent any toe walking on the left side, and hopefully prevent some falls. But of course there are some nerves. His PT did inform me that he may actually fall a little more when he first gets the boot because it is going to be correcting the way he has learned how to walk. This makes me nervous, because I was just starting to have more confidence in his walking and not needing to use the reins. I’m also nervous for the process of the fitting of the boot. I know they have to cast his foot/ankle and I just don’t know how well he will do with that since he can’t sit still nor does he like feeling controlled. But again I will have faith that everything will go more smoothly than anticipated. Plan for the worst, hope for the best!

Henry will need to wear the AFO on his left foot only and he will have to wear it for a maximum of 4 hours a day. His PT said no more than what a normal preschool day is. We will start of slow (an hour a day) as it might be a bit uncomfortable for him at first as it stretches his muscles and realigns his ankle and hip bone. I have been trying to be proactive in educating myself about the AFO and the best type of shoes to wear with them. I was a little worried at first in regards to what type of shoe we were going to get, but I think after some research I am going to try out the Nike Flyease first. If they don’t work I’ve been told that Unbalanced works well with AFO’s. I’ve also learned that Nordstroms will sell kids shoes at 2 different sizes which will help accommodate the AFO as you usually have to go a shoe size bigger.

January 11 is quickly creeping up and nerves are starting to kick in. Fingers crossed it will all go smoothly.

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Daycare Fears

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We have been very fortunate that we haven’t had to put Henry into daycare.  Originally when I found out I was pregnant I had planned on going back to work full time, we had a daycare set up and had even paid the deposit. A few weeks before I returned I realized I couldn’t do it. The thought of leaving him broke my heart.  So we checked the numbers to see if it was possible and thankfully it was.  Luckily my work allowed me to come back just 2 days a week. We are also very fortunate that my mother-in-law has been able to watch Henry those 2 days.  Obviously when I decided to stay at home, we didn’t know he had CP. So it actually turned out to be a blessing in disguise.  Now I’m able to take him to all this therapy appointments and work with him at home and record all the improvements and difficulties.

We had a bit of stressful past week because my mother-in-law’s job decided that she wasn’t going to have the same 2 days off and she either needed to go back full time or cut her hours down even more.  My husband and I were trying to figure out what we were going to do. I can’t go back to work full time due to all his therapy appointments, yet I can’t stop work all together because my paycheck helps pay for his therapy appointments. So we started to think about putting Henry into a daycare.  Long story short, my mother-in-law decided to cut her hours back and is still able to watch Henry Wednesday and Thursdays.

The thought of daycare excites and terrifies us. We have the usual parent fears of having to trust someone else to watch our child and our whole world. You hear the most horrifying stories of daycare workers killing or harming children, and you can’t help but feel nervous to put your child in one.  Now, before I get carried away I just have to let it be known that we are only putting Henry in a daycare once a month. Just to start the process and get him used to being around other children and away from me.  He will start in January and will be just under 19 months.  We found this at home daycare and have checked it out, saw the other children there, and I even posted on Facebook if anyone has used it. So far we have liked what we have seen, and I got a few comments back saying their children loved it. This does help me feel more comfortable in my decision.  

Putting aside all the usual parent fears, we have the added CP fears. We have informed the daycare owner about his disability and she listened but again, I feel like people don’t quite understand how serious it is specially when they see him and he looks just fine.  We are just so scared that he is going to fall and hurt himself because the workers didn’t realize that he actually can’t catch himself or the fact that he has balance issues, or he can’t climb up the steps the same way – the list could just go on and on. On the other hand I’m  scared he will start to realize he can’t do certain things like: not being able to keep up with the other children, not being able to do things without assistance, and just having a harder time in general. I know he is still so young, but these are the fears I find myself thinking even if he has no idea. These are also the exact reasons I think daycare will be good for him. For him to learn all these things and learn how to adjust. I feel like I’m always going to be scared when he does something new and that’s just part of parenting. I don’t plan on homeschooling him so I have to have faith that my husband and I look out for him in the best way we can and pick the right places and schools for him.

I do realize that he is only going once a month and he will more than likely be just fine. I think he will actually enjoy it because he is such a social little boy and enjoys being around other children. These are just my own fears and now that we are starting to get to the next stage I have to just educate more people about his disability and make them understand that he may have a weaker side or may do things a little differently. I think daycare will be good for me too. Learn how to have a little more faith and maybe even relax a little. 

Reins, Leashes, and Opinions, Oh My!

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Before I was a parent I had a long list of dos and don’ts for being the perfect mother. I thought I had it all figured out. But as we all know, that is never the case. After weeks of Henry falling and catching himself with his head I decided to do something about it.  As we all know the falls were taking its toll on me and I needed to do something about it for everyone’s sake.  For the past 3 weeks we have been using reins/a leash on Henry.  Below is a link of the brand we use and so you can see just how it looks and fits him.

https://www.amazon.com/dp/B01321MBJ6/ref=twister_B01420VGCY?_encoding=UTF8&th=1

My mom bought us these reins months ago, but my husband and I were reluctant to use them due to judgments and dirty looks from other parents and possibly comments.  After watching Henry fall one too many times, and him refusing to hold our hand, I decided to try them out during a trip to a garden nursery. Best decision I have made in a while. I was able to catch Henry and prevent him from smacking his head onto the concrete numerous times. The reins do not bother him at all, and once he regains his balance from a fall he just keeps on running and exploring. I now use the reins at the park, shopping at Target, and walking around our neighborhood.  There are days I feel insecure when using them, because I do get a lot of stares from people and it’s probably my own insecurities but I feel like they are judging me.  I spoke to both Henry’s PT and OT about the reins and they both love the idea. Any way to keep him safe and give him the freedom he wants is a win-win in their books.  His OT was all about them and says she knows many people who have used them to help prevent some gnarly falls.

After preventing numerous falls I started to feel more confident in my choice to use them. I had even prepared a speech in case someone wanted to ask (or make a comment) about why I use them. One night I was scrolling through Facebook when a guy from my high school, whom I don’t talk to and haven’t spoken to for 10 years, wrote a status about reins. Now I hardly post anything on Facebook, and specially not anything that I know can be controversial because in all honesty I don’t like confrontation at all. Anyway, this guy who does not have any children, writes a post about parents who use reins on their children are lazy and stupid, and how proud he was to have given her a dirty look. The moment I read it my blood boiled. I wanted to respond so badly about how he was such a judgmental idiot and does not even understand. I didn’t. I didn’t write anything. I waited till I calmed down and once I did, I realized that he just doesn’t understand or know what life is at all like when you have children. He had also angered enough mothers out there who put him in his place about not knowing what it is like to have a child.

I’m glad I didn’t respond when I was angry but I also feel a little guilty in the fact that I didn’t take the moment to educate him. It’s those people who need to be educated so we can break this stigma. To me, doing it over Facebook was not the solution. And I don’t really know what was. I guess I just hope that next time someone says something to me, I will say something without judgment, without anger, and just help educate.

It’s all a learning curve. We are still using the reins and still saving Henry from falls. I’m feeling more at ease when we are out and about knowing I can help prevent bumps and bruises. And I’m feeling more confident in my decision to use them and I’m prepared to answer questions or comments by curious onlookers. Until Henry is a more experienced walker/runner we will continue to use the reins.

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The plan, the goals, the achievements

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Physical Therapy

Balance:

Henry’s favorite part about PT is getting to go on the trampoline.  If we walk past it he gets so excited and wants to stop whatever he is doing to get on it. We are teaching him that he needs to finish his activity first and then we will go and play on it.  Once we are ready to get on the trampoline his therapist will assist him up the stairs and then they climb through the netting.  When he is comfortably on the trampoline, he will stand up on his own – this move alone is good strength building as he is bending over and due to the weight distribution it is at an angle and not a flat surface – once he is standing, he will run from one side to the other screaming with joy.  Little does he know, that this is actually helping with his balance.  As we all know, walking (let alone running) on a trampoline can be quite difficult as it’s not a sturdy surface, so for Henry to be running across it helps him learn control and balance.  It also helps me stay relaxed because if he does fall, he doesn’t hurt himself.  The therapist will be on the trampoline with him and they also practice jumping and falling down.  Being only 16 months he obviously is not able to actually jump on his own, but his therapist does say that it is good for muscle memory and keeping the knees flexible.

Core Strength and Arm Flexibility:

His therapist is aware of his many falls lately and we are currently working on building up his muscles and reflexes to help him protect himself.  This past Tuesday we worked on building up his stomach/core muscles.  She informed me that these muscles are just as important for him to protect himself because they will help him regain his balance if he feels he is losing it and can help him control the way his body falls.  To build up his stomach muscles we have him straddle a decent size cushioned cylinder, reach across one side of his body, pick up a toy, and then have him put the toy in a box on the opposite side of his body.  This helps build the muscles because he is not able to use his hips to turn but only use his core muscles, and then having him bend down and come back up (again using just his stomach muscles) is truly a workout for him.  This activity is also helping his arm/shoulder range and flexibility.  Again, this will  help him learn how to catch himself because if his reflexes and left arm are able to move quicker and at a larger range he might be able to protect his head more.

Achievements & Goals:

As we were finishing up our session and were making our way to walk out, Henry saw a little playhouse with 3 stairs, a tunnel, and a slide.  He immediately let go of my hand and walked straight over to it. Neither his therapist or I stopped him because we wanted him to explore on his own and see what he was going to do. He put his right hand on the stair rail, walked up 3 stairs on his own, tried to crawl through the tunnel (this he did need assistance), and then scooted to the slide and went down perfectly.  We were both so proud of him, one for being able to climb up 3 stairs by himself and correctly, but also for initiating crawling through the tunnel! It was such a great feeling and I gave him such a big hug and kiss, which prompted him to do it 2 more times.  It was just amazing to see him walk up the stairs correctly and see him able to keep his balance when he went down the slide and not just fall backwards.  Such an awesome way to end the session.

Our current goals at PT are to get him to walk up more stairs confidently, come down stairs, squat bending both knees, and for him to get better at catching himself when he falls.

Developmental Specialist

We got Henry’s evaluation report back this past Tuesday.  Nothing in the report concerned us and everything seemed to be as we thought. He was little behind on the physical aspects, but that’s to be expected.  We are currently working on having Henry follow directions, taking turns, and two word sentences. Henry knows approximately 20 words. Some are very clear and there is no doubt or question as to what he is saying, however, there are some words that are a little more difficult to understand. And I know this is common in all children. The developmental specialist has zero concerns over his expressive language as of right now, because to my knowledge, it’s quite common for kids with CP to have to do some type of speech therapy. But in all honesty, I did speech therapy as a child and I know many kids that do it who don’t have CP.

Lately, Henry has been trying to say different words that have a stronger more defined ending to the word like bird, boat, and out. These words are proving to be a little more difficult for him and he is not saying the ending. For instance instead of saying “out” he is saying “ou” or instead of “bird” he is saying “bir” and “boa” instead of “boat”. I brought this up to our specialist’s attention to see if there are any activities that we can do to help him pronunciate the ending of these words. She suggested that we have him look at us and keep eye contact when we say the word. By doing this he will watch how to pronounce the word and hopefully start mimicking it himself. The problem with Henry is that he is very stubborn and likes to do things on his own time.  You can ask him 10 times in a row to say a word and he’ll just smile at you, and then the moment you give up and turn around he’ll say it. Typical.

Our current goals in regards to his developmental/cognitive milestones is to have him follow directions, have him start cleaning up after himself, ask specifically for objects, and to start saying 2 word sentences. The 2 word sentences are more advanced and we were informed that they expect a toddler to be able to do this by the age of 2 but starting it with Henry now and trying to get the ball rolling is our goal.

Occupational Therapy

Henry has made some great improvements with his left hand/arm thanks to OT. Also the older he is getting the more he is tarting to realize he can do more when he uses both hands. We still have a long way to go in regards to his fine motor skills and getting his hand more fluid. We have also noticed that he isn’t using his left arm as much. For instance, most toddlers his age will begin to collect toys and objects by using their arms to store them. Henry will only use his hands. So if he is holding 2 objects he believes that is the max amount he can carry. He is not aware that he can carry more objects with his arm. So right now one of our goals is to get him to start carrying bigger objects to he realizes that his left arm can be beneficial.

One of my favorite stores is IKEA. I love it. Specially when I’m getting things for Henry’s room and playroom because if damages or draws on them it’s not the end of the world because we didn’t pay an arm and leg for it. Anyway, at the kid section they have these HUGE stuffed animals and pillows. Well my husband always has to buy him one whenever we go. The first one he bought for Henry was before he was even born, it was a big basketball cushion. So the reason all that information is important, is because we have started trying to play catch with Henry. Henry loves playing with balls and he gets to so excited whenever my husband plays with him. Now again, he is only 16 months so it’s not actually catch, but my husband will count to 3 (Henry is a few feet away from him) and then he will gently toss the pillow basketball at him to catch. There are times where he will miraculously catch the basketball and other times where it bounces off his head and Henry runs away laughing. This is really great therapy because Henry is learning that in order to catch such a big object he has to use his arms and hands and can’t just depend on his hands.

After his last therapy session his OT therapist was very happy to see that Henry was willingly playing with his left hand. There were many times she didn’t even need to hold back his right hand and he would just play with whatever toy was coming his way. We have therapy again this Monday so it’ll be interesting to see if she notices any difference in the use of his arm.

The K.E.N. Project & Brandon Buddies

I did some research on support groups for parents or kids with mild CP and I stumbled across a website and organization called The K.E.N. Project and Brandon’s Buddies.  The K.E.N. Project stands for Kids with Exceptional Needs. They have a large support group, advocacy training, parent training and volunteer opportunities. They have meetings once a month in Culver City and in Woodland Hills on Wednesday evenings from 7p.m. – 9p.m. I am definitely going to try and attend one of these meetings located in Woodland Hills. I think it would be great to go, see what it is about, hopefully meet some new people, and just get some more information on how I can be the best advocate for my son.

Brandon’s Buddies is a free kids club that meets every month at Brandon’s Village at Gates Canyon Park in Calabasas. It is for all kids with or without disabilities. It is usually held on the first Saturday every month. So my husband and I have decided to check it out on December 1st. I think we both would love to meet and interact with other families who are going through similar situations. I’m excited to have found these two pages and to learn more about different ways I can help. I’ve listed a link to both The K.E.N. Project and Brandon’s Buddies.

The K.E.N. Project: https://www.kenproject.com/who-we-are

Brandon’s Buddies: https://www.kenproject.com/brandons-buddies/

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Just Another Day

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This past Friday started like any other day. Everyone got up, had breakfast, showered, did Henry’s stretches, and just went on with their day. Henry and I went to our hand in hand class, and this week I carried him in so we wouldn’t risk another fall on concrete.

We got to class nice and early. First ones there actually. Henry was having the time of his life, playing with the toys and throwing the oatmeal sensory play everywhere. Another little boy showed up and it’s just the two of them for awhile. After about 5 minutes Henry needed his diaper changed so I did that, put him down and let him walk back to the playroom where the teacher, the other little boy, and dad were. As I finished tidying up the dirty diaper I all of a sudden heard a blood curdling scream. I knew it was him. I ran to the back room and I asked what happened, and yep you guessed it, he fell. Caught himself with his head again. The teacher was cuddling him but he only wanted me. She suggested that I get some ice because the bump looked huge (I mean a real goose egg). My response, “oh that bump? That one was from yesterday. We just added another bump to this one.” Yep, Henry fell the day before in our hallway running to greet my husband and tripped on his own feet.

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Like all kids, he quickly forgot about the fall and had a great class and he even made a monster painting (the featured picture). I, on the other hand, wanted to scream and cry. The whole class I was holding back tears. I’m in a group chat with my mom and husband telling them what happened and how I was feeling. My husband made a doctor appointment for Henry for right after the class because we started to think it could be his imbalance due to his CP. Our regular pediatrician wasn’t in so we met with someone else, which I wasn’t too happy about because he doesn’t know all the details about Henry. The doctor was really nice and very thorough. Didn’t think any major damage had happened, no concussion or anything but he did want us to get an X-ray to rule out a fracture. Better safe than sorry.  He also suggested contacting his neurologist and asking about a helmet to protect his head from some of these falls.

So we made our way to the imaging center to get Henry X-rayed. And spent the whole afternoon there. Thankfully my husband was there to help me because trying to keep this kid still long enough to get a good picture is nearly impossible. And of course he was screaming the whole time because he was scared. I think that’s always the hard part, he doesn’t understand what is happening and therefore just cries out of fear.

Luckily we found out the results within 30 minutes after the X-ray was done. No fracture! Just a nice big bruise that should go away on its own. We have to go back to the doctors in a week just as a standard check up.  I requested to meet with our original pediatrician just so we can catch him up with everything going on.

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The whole time this was happening I was thinking, how many 16 month olds are having to have their heads X-rayed for a fracture due to falls and an imbalance issue? How can I protect my son from all these falls? Are these falls my fault? Am I a bad mom?

Getting Henry’s diagnosis was a hard pill to swallow, but we did it as a family. I allowed myself a day to grieve and then move on because I didn’t ever want him to feel sad. But these falls are truly taking a toll on me.  There are days when he’s napping I cry into my pillow because I can’t be there 100% of the time to stop his falls and I feel like I’m failing as a mom. I’m starting to look for a group in LA for parents and children with mild CP to try and meet people who are going through the same (or similar) things. None of our friends quiet understand the stress, worries, or struggles, and again that’s not their fault and it’s fine, but I need to talk to some people who do get it for my own sake.

Today was a hard day. But Henry went to sleep smiling.  He was happy. And that is what I need to focus on. That is all I ever want.

Halloween

A positive side note. We did go trick or treating with Henry on Wednesday. It was his first time, since last year he was only 4 months old.  At first he was confused but by the end of it started to understand what to do.  Once people started offering him candy he would happily grab a piece and put it in his little bag, and then wave bye to the people. He was dressed up as a dinosaur but without the head.  He’s not a fan of hats so I could not get him to wear the head part of the costume.  I’m excited for next year as he will be over 2 and maybe enjoy it just a little bit more! Below are some pictures of him in his costume (and the dog).

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Mom Guilt

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Every parent deals with some type of guilt in some way or another.  It can vary from possessions, spending quality time together, going on trips, having the trendiest clothes, or working too much.  Literally the list can go on and on and any parent will tell you that they have felt guilt at some point in their life.

A lot of my guilt stems from therapy.  Whether we are doing too much therapy and not enough fun activities or too little therapy that I’m actually hindering Henry.

Today we had physical therapy. Henry did great. It also helped that he was in a good mood. Our PT told me when Henry bends down to pick up an object he is starting to distribute his weight evenly across both legs instead of just the right.  So that was pretty awesome to hear.  On the other hand he’s started walking on his toes, but only occasionally. I asked the therapist about this, and she said it’s related to his CP but since he is walking on both toes and only does it randomly for a short period of time it’s most likely a phase and at some point all toddlers do this.  She said that once we use the AFO ankle boot it will help keep his Achilles heel stretched, even during growth spurts, and prevent the occasional toe walking.

Anyway back to therapy guilt. On the days we have physical therapy I don’t necessarily want to do more therapy when we get home. I know when we go to therapy, Henry isn’t quite aware that he is working out and thinks it’s all just for fun. For instance today we jumped on the trampoline, rode a tricycle, played in the ball pit, and walked/crawled/climbed through a Halloween obstacle course.  But it’s still a hard hour for him. We are pushing his little muscles to the max. So coming home and forcing him to do more therapy just seems so mean to me.  Same goes for days spent at OT.  Some days we do indeed do more therapy at home and some days we don’t.  Either way I then lay in bed at the end of the day wondering if I did the right thing.

When I do decide to do more therapy at home, I am always nervous that he’s not having the best childhood he can. Will he look back and only ever remember me pushing him to workout? As much as I would love to only ever be associated with fun memories, I know as a parent, that is not the case and I have to do what is best for him. I just don’t want him to resent me.  And it’s the exact same feelings and worries I have on the days we don’t do more therapy at home.  Is he going to think I didn’t do my best to help him? Am I actually causing more complications and obstacles for the future by skipping therapy at home and going to the zoo?

I know it’s about finding the right balance and when I look at the bigger picture, I do feel like we have a good balance.  The guilt just never goes away.  I literally just always wonder if I’m doing enough for him.  I try and find ways to incorporate therapy into the fun things we do. Like tonight, we carved our pumpkin. I had him taking the top of the pumpkin off with his left hand and then he would scoop the insides out with his right (we did this a couple of times).

I also have quite a bit of guilt when talking to the therapists.  When they ask me how Henry has been this week and if there have been any changes, I always leave wondering if I had been truly and 100% honest. Should I have worded something differently? I just don’t want my hope to blind me and not tell the full truth or excitedly exaggerate a small improvement. I worry that I’m not seeing all of his struggles to the max because 1) I subconsciously don’t want to, and 2) I’m with him all the time so I’m used to the way he does things.  This is one of the main reasons I love when my husband comes with me to the appointments.  He always manages to answer the questions, explain certain movements that he makes, and discuss options more realistically (in my mind) while I feel I’m more clouded with hope.

I always heard about mom guilt and how moms truly never feel like they are doing a good enough job.  But I honestly can’t help but wonder what type of things I would be feeling guilty about if I wasn’t worried about my son’s disability.

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Playgroup

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Every Friday morning I take Henry to an older mommy and me class. There are a total of 12 children all ranging from the ages of 13 months to 18 months. It’s very relaxed and just a really great way for the kids to learn social skills, play with new toys, learn rules, and just have fun.  I also love it because I meet new parents. Being one of the only people in my own group of friends who has a child, it’s quite refreshing to meet some other parents.

The class is about 45 minutes give or take a few depending on the children’s moods.  When the kids first arrive it’s free play, where they can run around and play with toys. Then the teacher will ring a bell and the children quickly walk into the next room for circle time and sing songs (kinda cool to see them learn that the bell means circle time).  Then it’s back to free play while the teacher sets up some type of art or hands on activity.

Yesterday we got to class a little early so I let Henry walk to the classroom by himself, instead of hurriedly carrying him because I’m nearly always late. He was having a great time walking around and seeing all the older kids (they have a preschool at the same location). I was walking in front of him telling him to follow me. Literally just as I turned away from him I hear the sound of a head hitting the concrete. I spun around so quickly I heard a loud pop, clearly indicating I have just broken the sound barrier. I found  Henry laying on the ground screaming.  I threw my stuff down and picked him up.  And of course, he has a ginormous bump on the very top of his forehead.  The poor kid was screaming, I was getting sympathetic looks from parents who have been there, and I made my way to the front office to see if they had any Neosporin and ice to help.  Surprisingly there was a silver lining to his fall  and it was the location of the goose egg.  In the past, when he has fallen he would typically land smack-dab in the middle of his face. Meaning all his bumps would be between his eyes, on his eyebrows, nose, etc.  In order to see this bump I have to push back his hair – which means he was able to put his hands out to protect his face, but he didn’t have the arm strength to keep his head off the ground! As much as I wish he didn’t fall, I was happy to know there were improvements to him catching himself and it gave me hope that he will one day be able to protect his head.

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After the tears had stopped and we had put some ice on the bump, I went and joined the class.  Henry immediately forgot about the fall and ran to the car toys he wanted to play with.  As more children showed up, it was like the fall had never happened. He was going inside tunnels, not crawling but scooting in. Again this was something new for him, because he will usually avoid them all together since he knows it will be hard for him (yay for two mini achievements in one day). He was also playing with cooking utensils, screaming with joy, and just having the best time.

Henry is a social butterfly and LOVES being the center of attention.  So circle time can be a little challenging to keep him standing/sitting next to me.  But he was a rock star and stayed by me for the first song! One thing we noticed early on that might be more difficult for Henry as he gets older, was clapping.  When he claps, he keeps his left hand in a fist while his right hand is open and will bring them together in a clapping motion.  To us, it’s normal and again the more we do OT and PT his left hand is opening up ever so slightly.  It’s a process but exciting to see even the smallest improvements.  Parents have noticed and even asked me why he does that? and I just say “oh that’s how he claps” and they respond with “aww so cute!”.  Now that we have been going to this class for 2 months and they have had a chance to get to know Henry, I am slowly starting to tell them about his CP.  They are  shocked to hear he has it and say they wouldn’t have been able to tell and then move the conversation on.  I love that it’s not a long discussion, it’s just a “Oh! Wow! OK” and then that’s the end of it, everyone moves on.

We ended the class with the parachute.  I know we all remember those days and it was so much fun to see Henry loving it.  He was running back and forth underneath the parachute as it went up and down and the whole time screaming with laughter.

So overall, the morning started a little rough, but ended on a high note.  I know these falls will happen, and I just keep telling myself that he is constantly getting stronger and will hopefully one day not have a to catch himself with his head.  I also have to remember to hold his hand when walking on concrete to try and avoid these little accidents.  He’s already a mama’s boy, so holding my hand will only make him happy.

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Helicopter vs. Lawnmower parent

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Everyone always hears about helicopter moms and how they’re scared to let their children make a mistake.  I’m not going to lie, it used to be a secret fear of mine when I was pregnant. I knew exactly the type of parent I wanted to be. We were going to have a schedule and he’ll sleep through the night by 12 weeks, we weren’t going to spoil, and he would eat what we eat. But as any parent can tell you, you can plan all you like but once that baby is here everything will change.  Of course nothing went to plan. Henry didn’t sleep through the night until 10 months old, my husband spoils Henry every time we go somewhere, and Henry is one of the pickiest eaters! I will do anything to get him to sit still and eat a full meal. Also, Henry’s diagnosis made things a little more difficult in the sense of schedules, therapy appointments, and just trying to live a normal life.

So most of us know the term helicopter parenting. The type of parenting when a parent stays close or hovers to their kid at public areas, or is heavily involved with schooling and daily activities to try and help avoid any mistakes from happening.  However, I recently stumbled across a new term to describe a parenting technique – lawnmower parent. Now this type of parent is someone who is always one step ahead of their child, making sure there are no obstacles in their way making their path easier. As much to my despair I relate to both of these terms.

Helicopter Parenting

As you may have read, Henry was somewhat an early walker but not a confident one.  So for many months it was a lot of hand holding, coaxing, and being there to catch and support him when walking to and from people and objects.  Totally fine, and many people didn’t bat an eyelid, they just assumed he was still learning. However, the older he gets the more he tries to do things that are difficult for him.  For instance, when we are at a park he sees the other children climbing up the stairs, the rock walls, jumping on stepping stones, sitting down to go down the slides etc. Henry wants so badly to do the same things. Which I love but he still needs help as he doesn’t have the best balance or strength to prevent himself from getting hurt.  Another fear is the other children who are playing and running past him. It just takes a small sudden movement for him to lose his balance and fall. So when we are walking around the structures and watching the other children, I’m again right there to make sure he doesn’t lose his balance, fall and bump his head on a metal structure or object. Every time we are at a park or play place, I am inches away from him, ready to catch him and keep him from hurting himself, ready to assist him, ready to take on the park with him. He’s happy because he’s with me but to other parents, I’m a helicopter mom.

Henry doesn’t squat the same way toddlers usually do to pick something up.  He will keep his left leg straight while locking his left knee, and then bending only his right leg, he will lean forward to pick up an object on the ground.  His PT informed me that he is using his left leg to stabilize himself so he won’t fall and that it is very common in hemiplegia children. It took him awhile to master this move and prevent himself from falling. When we would be outside either myself or my husband would be literally hovering above him ready to catch him lest he smash  his face into the concrete. If Henry was on carpet or grass we would be way more relaxed as it was something that wouldn’t hurt nearly as badly as concrete. Again to other parents we were helicopter parents.

Lawnmower Parenting

I found myself relating to the lawnmower parent technique both at home and out.  There are times I will avoid certain play areas or doing certain activities because I know it’s just going to lead to injuries and tears.  And because of that there are days I feel terrible because I’m purposefully avoiding a busy park in hopes to keep him safe and not get hurt.   At home I find myself doing the same thing. We have a ball pit and one of Henry’s favorite games is to climb into the pit and then tip it upside down having all 150 balls roll all around his playroom.  Once he’s finished with this game and moves onto the next adventure, I’ll find myself quickly pushing balls out of his way so he won’t accidentally step on one leading him to fall. Since PT began, he has become  better at dodging items on the ground, keeping his balance, and now catching himself. But the fear is still there, I’m still so worried that one day he won’t catch himself and he will fall, will get hurt, and then lose his confidence.  I know that for me I’m trying to protect him from hurting himself is not to avoid the tears but because I don’t want him to get discouraged from attempting different things. I want him to always have the confidence to try different things and feel like he can do anything (I am also aware that he is only 16 months old and accidents do happen).  

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Usually it doesn’t bother me what other parents think. But what makes it hard is when friends are the ones making the comments.  Just the other day at a party, there were concrete stairs and both my husband and I watching Henry like a hawk because he kept wanting to go down them.  We both knew that if he fell, he would tumble face first down the steps. Our friend turned to me at one point and said “that’s how they learn, let him fall”.  I just ignored him, because I know he doesn’t understand what it would mean if Henry did fall. At the same party, Henry was attempting to sit down in a toy car. This takes a lot of effort for him, because he has to balance on one foot, lift his leg up and turn in the right direction before sitting down.  Something we all take for granted. I was watching and saw that he was having some trouble, so I went over to assist while asking “do you need help?” Someone heard and said “he’s fine let him figure it out”. I’ve had friends tell me that I’m just over protective and I need to lighten up. What makes it hard is when they know he has a disability but it’s like they forget because they don’t see it or they just don’t realize the everyday difficulties he faces.  I don’t get mad at them when they say their comments, because I know it’s not meant maliciously. It’s just – annoying and frustrating at times and I sometimes find myself trying to defend my actions.

I know this post makes it sound like I don’t let Henry do anything on his own.  Trust me, I do. And honestly I don’t have a choice now that he’s so active. He’ll just sprint away. You’ll literally just see Henry run by and me trying to catch up to him. And I do know that falls are inevitable and will help teach him and make him stronger, I just don’t need him to fall down concrete stairs to teach him.

Evaluations, Labels, Fairness, & Feelings?

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Every week a developmental specialist comes to our house to work and play with Henry.  It was offered through the Regional Center and since it was free we decided to take advantage of it.  She comes every Tuesday morning and brings different toys with her for him to play with. She is pretty much looking to make sure he is meeting certain developmental milestones and requirements, able to understand certain things, follow directions etc.  It’s very relaxed and Henry loves it when she visits because he gets to play with different toys.

When she came over this past Tuesday she informed me that she was going to be conducting an evaluation of Henry to see if he’s where he needs to be with his cognitive, fine/gross motor skills, and social/emotional skills.  I was happy that she was the one conducting the evaluation because she’s been working with Henry one-on-one for the past 6 months. I’ve been able to tell her about his improvements, difficulties, and achievements. My husband, who usually is not at these appointments, was able to stay for the first part of the evaluation.  This helped put me at ease because he asks questions that I wouldn’t even think to ask and he always has follow-up questions to a response.

The evaluation was a list of questions asking if he did certain activities.  Some of the questions included: “does he know a body part?”, “does he feed himself?”, “does he reach for objects out of his reach?”, “can he follow instructions?”, “how many words does he know?”.  Again, since our specialist had been working with Henry for 6 months she was able to answer a lot of the questions on her own. She told me at the end of the evaluation that she will type up an official report, but that he is exactly where he needs to be.  Some of the activities he was advanced on, some exactly where he needed to be, and some behind. So that equaled out to him being 16 months (yay!). Hearing that was a sigh of relief. I don’t need Henry to be a genius, God knows I’m not, I don’t need him to be the smartest kid in his class, or at the top of the reading table.  I mean, if he is – great! That’s awesome! But I don’t need that. Being told my son is exactly where he needs to be, is like music to my ears. He’s already going to have a harder time in life due to his CP so if something goes in his favor just a little, I’m ecstatic. She said she didn’t need to ask any questions in relation to his social or emotional skills because (and I don’t mean to brag) Henry is a social butterfly and loves people.

Before she left I asked what areas Henry is behind on.  She said there were a couple scattered through cognitive and fine/gross motor skills.  The motor skills did not surprise me, because he has a weaker left side and so he has a harder time completing certain physical activities.  However, I was intrigued when she said he was behind on some cognitive, so I asked for specifics. She told me one question was “Does Henry pretend or attempt to feed a doll?”   I was so shocked that this was even a question. We don’t have any dolls at my house for my son to play with, so how would he complete this task? I have offered him dolls on many different occasions but he shows no interest.  There was also a period of time where he was obsessed with Moana and I offered him a Moana doll but he threw it to the ground. I have also pretended to cuddle a baby doll to see if he would care but alas he doesn’t. I told the specialist that he is constantly trying to feed our dog, or that he’s had an empty spoon and bowl and he tries to feed himself but I don’t know if that helped change the answer.

I think it’s great that children have so many teachers, aides, and programs to help them in everyday activities and tasks.  I think it gives parents a sense of ease knowing there are tools out there to help their child in more ways than one.

After the specialist left, I found myself feeling frustrated over the doll question for quite some time. I know for a fact, that my friends who have typical kids aren’t being evaluated at 16 months. And I know for a fact that they aren’t being asked if the kids are feeding a doll.  Every child is different, and like my mom says “there is no average adult so why do they expect children to be average?” I agree. For the rest of Henry’s child and young adult life, he is going to be constantly checked and placed in boxes for what “he should be doing”. When I think about this, I get so frustrated.  I hate the fact that my child is going to be constantly compared to statistics. Of course he is going to have strengths and weaknesses. Everyone does. But to me that does not mean he is behind. It reminds me of the crawling situation. I know SO many babies who didn’t crawl, but yet because Henry is being constantly evaluated and marginalized to fit within a certain box or criteria, him not crawling meant he was behind (even though he would roll or scoot on his bottom).  I had 2 different pediatricians tell me that as long as the baby can find a way to move and get around, that’s what they care about.

As of right now, I don’t have all the details in the report and I probably won’t have a copy until next Tuesday. But my goal for the next evaluation is to find a way not get so frustrated at the questions since these evaluations are going to happen no matter what.  All I need to focus on is doing what is best for Henry, giving him all the tools to help him, and just support him. And these evaluations are done with that in mind too. It’s all a learning curve, even for me, and the next evaluation that’s done I will try to be more open minded.

Sidenote: We are still working and practicing with Henry to crawl, even though he is walking. The crawling helps build arm, shoulder, neck, and back strength.

Physical Therapy (PT)

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Henry started walking at 11 months.  When you watch him walk it’s hard to really notice a difference from all the other children.  However, if you pay close attention you will see that Henry has a little limp and will lead prominently with his right side.  In order to stabilize himself when he walks, he will lock his left knee to help keep his balance. So in all honesty his walk just looks a little more rigid.

He weirdly had more confidence outside with his shoes on than inside the house barefoot.  It took him a couple of months to really build up his confidence, and for awhile he would prefer to hold your hand. He would literally be holding onto one finger. I think it was a comfort for him knowing that someone was close by in case he tripped. It wasn’t until he was 14 months that his confidence really took off and he would start running everywhere and actually pushing your hand away.  Since then it is almost impossible to catch him.

It took us awhile to find the right physical therapist.  We started going to this one place near us in Woodland Hills when Henry was about 11 months old.  The appointments lasted for only 30 minutes. We didn’t stay with this physical therapist for long due to scheduling conflicts (double booking and then canceling my appointment last minute), and my feelings were that they didn’t take how Henry was feeling into consideration.  Henry’s OT had always told me that “if the child is crying or physically upset you have to change the setting because no therapy is going to work since they aren’t listening”. This always stayed with me and I agreed. I know when Henry gets upset he isn’t looking to learn something new or be forced to stretch his muscles, he’s looking for comfort and love.

The final straw for me occurred in August.  I didn’t take Henry to PT for the first 2 weeks he had the cast on.  However, I thought that the last week it might be a good distraction.  Now keep in mind, every time we went to PT Henry was only happy for about the first 10 minutes, by the end of each session he was in tears (this didn’t happen at OT).  Anyway, so Henry had his cast on and I suggested to the therapist that we take it easy since the cast was there and she agreed. I thought the appointment was going to be fun and more relaxed.  Boy, was I wrong. The therapist forced Henry to do things he didn’t want to do which led to him screaming, and for 15 minutes had him walking up and down the stairs. Stairs at this point were really hard for him to do since he didn’t have the balance or strength, plus his right hand had been “taken away” from him.   It got to the point where Henry was hyperventilating he was so upset and I almost grabbed him myself and told the therapist enough. That didn’t happen. But I never went back there again. I felt so guilty for letting Henry become that upset and was determined to find a new place.

Luckily my husband has a friend who is a physical therapist and he asked her about her building and if they were accepting new patients.  This place is located in nearby Simi Valley. I thought the drive was going to be just as long as driving to CHLA, but to my surprise it’s actually only a 20 minute drive.  Switching to this place was the best decision we have ever made. Our appointments are an hour long each time, on the same day, and at the same time every week. This makes life so much easier, because I don’t have to juggle all the therapy appointments around one another and we both get settled into a routine.  

At CDC (Child Development Center) they believe that children learn the best when they are having fun.  This philosophy was right up my alley. Henry gets excited every time we get out the car and not once has he cried while we have been there.  His therapist works with his mood and incorporates doing things he enjoys. The improvement Henry has made in as little as 2 months has been great.  He has such confidence in going up and down the stairs (still needs a little help), he wants to climb on everything, and he is even starting to bend his left knee when he squats. The different activities that his PT has him doing are listed below:

  • Walking, running, bouncing, sitting on a trampoline – this helps with his balance
  • Walking at a small incline on a treadmill forwards, backwards, and sideways – helps stretch his muscles and improve balance
  • Crawling through tunnels – helps build arm strength and build neck muscles because he has to look up and not down
  • Ride a tricycle – helps bend his left knee and build up strength in his leg
  • Play on swings – helps with his balance and holding onto the sides
  • Walk on obstacle courses (steps, balls, ladder on the floor) – helps him gain better control of his direction and keeps reminding him to bend his left knee to climb over things

We also put kinesio tape on his left leg.  We bend his foot upwards a little bit and have the tape run from his toes up to his knee.  This will help waken up the muscles on the front of his leg by stretching them out and help him walk heel to toe instead of toe to heel or flat footed.  The tape doesn’t usually last too long because once he finds it he will pull it off. So in an attempt to prevent that I’ve been keeping his shoes on inside the house to keep it on a little longer than 2 hours.  

His PT also informed me that when he is 18 months old (December) to speak to his pediatrician and get a referral for him to wear an ankle boot.  When she suggested this course of action, I didn’t panic like last time, I said ok and began asking my questions. She said not to worry about it right now and to see a specialist where they will correctly measure and fit a boot for him.  They wanted to wait to do the boot until he was a little older so he wasn’t such a new walker. They want him to be an expert walker and they also told me that sometimes damage can occur if you try to correct the muscles too soon.

So as of right now, PT is going great. Henry and I both love his therapist, he is constantly learning and improving, and more importantly he has fun.  This last part is so important to me because he’s a toddler and I don’t want his whole child life to be viewed as “work”. My number one goal for Henry is for him have fun, be happy, and love life.  And as of right now, CDC is the perfect place for him!

 

 

Occupational Therapy (OT)

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We were told by the neurologist that Henry’s arm/hand is more affected by his CP than his leg.  She said he would need PT but it would be in his best interest to start intensive OT as soon as possible.  Since Henry wasn’t walking we decided to only focus/worry about OT until he did walk.

Luckily we started OT immediately at Children’s Hospital, which is hard because we live in the Valley and CHLA is in downtown Los Angeles (and if any of you know LA traffic, you know it’s miserable.).  Each session is an hour long once a week.  I love that each time we meet with our OT it’s for an hour  because it means she’s able to get to know Henry, learn his likes and dislikes, and just figure out what works best for him.  Below is a list of the different types of OT we have been doing the outcome of each.

Temporary Constraint Therapy 

We were lucky that Henry knew he had a left arm. I had been told by doctors and therapists that many kids with his same diagnosis don’t realize they actually have another arm (or limb). We were warned that “taking away” his good arm could lead to tantrums and tears. Surprisingly this didn’t happen, and I think it was because he was aware he did have another arm, he just didn’t prefer to use it.  Due to that fact, it did make the beginning stages of therapy “easy”.  We started doing constraint therapy (wrapping up his right arm) 3 times a day for 15 minutes.  It didn’t seem like a lot, but again, he was only 9 months old and we wanted to ease him into it.  And honestly? The difference we saw after just one week was insane! He would just try and use his arm so much more! It was great. It gave our family so much hope that everything would be fine, and with just some therapy we’d forget all about this stage of our lives. But of course, that’s not the case and we are seeing that the older he gets, the more therapy we need to do, and the more he needs to learn how to use two hands. Over the past 7 months we have increased the time from 20 minutes – 3 times a day to 30 minutes – 2 times a day.

As of right now, we are only doing 30 minutes once a day.  Once Henry started walking our OT told us that anything where he is using two hands (climbing, picking up bigger objects, stabilizing with one hand and using the other) is therapy and will only help him.  Also, as he gets older the constraint therapy is getting harder and he cries for about the first half of the session.  Trying to find different ways to keep him entertained is hard.  We have done water play (bowls of water with toys or frozen vegetables), sand box, eating, coloring, and going outside and walking. But I personally believe it’s because he is more aware and actually realizes that we’ve taken away his dominant hand/arm. But we will keep persisting and hopefully keep seeing improvement.

Semi-permanent Cast

When our OT told us back in April that we might have to cast his right arm, I had a panic attack on the inside.  I didn’t know what to think, and I worked so hard with Henry over the next couple of months to try and prevent that from happening.  In my mind it just made the diagnosis seem so much more serious than what it was in my mind.  I mean, my kid was using his left hand it just was weak and not advanced. I was terrified about the cast.  We didn’t do the cast until August, so at this point Henry was 14 months old.  Thankfully, our OT knows Henry well and knows that he is a strong-willed little boy, who has an opinion and will let it be known, and is very active. So we decided to do the cast for 4 days at a time (Monday – Thursday night) for 3 weeks. Breakdown:

First week – The first week was totally fine.  Henry didn’t even cry when the cast went on, he didn’t really seem to mind it at home. He would play with toys, eat the same etc.  The problem was sleeping at night.  He is a tummy sleeper and rolls around constantly.  We all got very little sleep those 3 nights.

I was so excited to take off the cast after the first week. I was so sure there was going to be a noticeable difference.  But to my disappointment there was very little change. I actually cried when he went sleep.  I started questioning why were doing the cast if there wasn’t going to be a noticeable improvement.  Only one thing seemed to change, he would play with toys in front of him instead of to the right.  This did not impress me.  I was expecting a HUGE difference.  I did email our OT and tell her about my concerns.  She informed me that him playing with toys midline is a huge improvement and that he shouldn’t be favoring one side. She addressed my concerns and I felt a little better and decided to keep an open mind for the following weeks.

Second & third week – Putting on the cast was much harder.  He knew what was happening and was starting to fight it.  Again, playing at home seemed fine.  He didn’t really fight it too much.  He would get frustrated at times, point to the cast and then start crying, but if you distracted him with something more exciting he would move on and forget about it.  Again, the only problem was sleeping at night.  The last week was the worst.  He would just scream for ages because he couldn’t get comfortable, or  he would accidentally hit himself in the face, or get caught in the crib. I think we actually took the cast off Wednesday night during the last week due to lack of sleep for everyone.

The result – after the 3 weeks I saw an improvement in so many little ways.  He had managed to build up strength in his left arm and his fine motor skills had improved too. This meant he was able to start catching himself when he fell, like legitimately catching himself, he would get on all fours (which was something he NEVER did – he was a bottom scooter and not a crawler), he learned how to stand from sitting. Honestly, I could go on and on about the results.  It was the hardest and longest 3 weeks of therapy, but I would do it again and again if it means my son is that bit more independent and stronger.

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(Un)Balanced

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So, this is my first time writing a blog post.  I’m not even sure where to begin.  In all honesty, I wanted to try this as a type of diary for myself and see if there is anyone else going through the same thing or something similar.  So let me start with a little about myself and why I’m here.

My name is Maddie, I am 28 years old, married to a wonderful man, have an adorable terrier mix dog, and have a 16 month old son who is my whole world.  I work two days a week and my husband is a lawyer.  My son is the most loving and active little boy I’ve ever met.  He’s constantly running and screaming with joy and just making everyone around him laugh.  Looking at him no one would suspect that my son, the one running as fast as he can and “playing” with other kids has left-side Spastic Hemiplegia – Cerebral Palsy.

My son was diagnosed at 9 months old, after I pushed 2 different pediatricians to send us to Children’s Hospital to meet with a specialist because my gut was telling me something wasn’t quite right.  We met with a wonderful neurologist who confirmed our fears but also helped put them at ease.  We are lucky that Henry’s (my son) CP (cerebral palsy) is mild.  The neurologist even said that to the naked eye, she wouldn’t be able to tell.  But that’s also the problem. People don’t understand or believe the struggle that Henry and my family go through because they can’t see it. We do therapy 3 times a week in 3 different places to help strengthen his left side.

He’s taken some HARD hits to the ground because he’s not all that great at catching himself.  And without knowing Henry’s diagnosis people just think I’m being a helicopter mom. What they don’t understand is that it won’t just be a fall and get back up with some tears, it’ll his face hitting the concrete ground and him having yet another bruise, bump, or scrape on his face.

And then there’s the battle of “do I tell people so they are aware but then place my child in the disability category and assume he can’t do something?” or “do I downplay the diagnosis, not tell anyone (extended family & friends), and just have them think I’m a helicopter mom?”.  My husband and I have had this conversation so many times over the past 7 months and I still can’t figure out what the best route is.

But anyway – If you made it this far, thank you.  This blog will be about our journey, loving life, and navigating the world with spastic hemiplegia.