The kids are napping so I figured I might have a moment to update you on Edwin and his walker.
Soooo I now know that Edwin has more motor issues than even I realized previously. I can't believe no one wants to make a CP dx, and maybe this will change when we see the orthopedist in 2 weeks.
Even though he is finding it challenging, the walker is doing him a lot of good. It is very difficult for Edwin to even stand in the walker because he is so unsteady weight bearing. His feet turn completely to the sides and he sways while standing. His low tone is extremely pronounced in this standing position with nothing to lean his chest on.
When Edwin tries to take steps in the walker, his movements are very "classic CP." There is nothing fluid about the movements at all, and they are jerky, unsteady, and disorganized. He has maintained standing and taking steps which is AWESOME! But, many times he drops to his knees, and will even knee walk WITH his walker to where he wants to go! LOL! If you'll recall Serena knee walked for quite some time as well.
There is zero doubt in my mind that Edwin needs AFOs, or DAFOs, I am not knowledgeable in orthodics, but have a feeling I will be soon. I can't believe I allowed the first orthopedist to rush us out, but in retrospect that was the day Edwin began his cold that ended up in pneumonia and I guess I didn't want to stress him, and, admittedly, I'm sure part of me *wanted* to believe he didn't need them.
Again, I am in limbo. So many medical professionals have told me he is just delayed or has this transient dystonia bs. Remember we were told if they sit by 2 they will walk? I think Edwin will walk eventually, but he is now refusing to sit on his bum. He "w" sits 100% of the time without a lot of help from us. I can't plop him in sitting at all, and physically have to have him sitting in between my legs with my legs over his, with a toy and if he is interested in the toy he won't notice me taking my legs off of his legs. Once I do that, he IMMEDIATELY gets out of sitting and pops in a "w" sit. I'm worried about his hamstrings and am frustrated in a sense that I can't do more to encourage him to sit on his bottom.
I'm really, really tired of being in limbo. When people ask why he isn't walking, or why he has a walker now, or why they can't put him down on his bum to sit like you do with most kids, I want to say "he has cerebral palsy." I guess I want a reason, a diagnosis. It's kind of like that show Mystery Diagnosis. You can't really move forward or get the right treatment until you know what the issue is.
I am anxiously awaiting our appointment with ortho. Edwin will have the walker and the orthopedist can't rush us out like the previous one did. He is going to watch Edwin try and walk in the walker. Watch him pull to stand with both feet at the same time pointed east and west. Watch how he now REFUSES to sit on his bum and only wants to "w" sit.
It's not that I want my son to have to go through casting, and wearing AFOs, and all that accompanies it, it's just that I feel like he needs them, that he is similar to other kids who have them who also need them and do amazing things with them. I've been watching some youtube clips of other kiddos with CP and it just seems so evident to me that Edwin has cerebral palsy. Again, I just want to make sure we are doing everything we can for him. I don't want to see him struggle unnecessarily.
With all that said, it obviously changes NOTHING about how I feel about Edwin and how extremely proud I am of him. So he's not taking off in his walker like I would have hoped for him, but that's ok. I'm not exactly mourning the "typical" experience, because quite frankly nothing has been typical since the day they were born. Moreover, we made many thoughtful, heart felt decisions in the NICU regarding Edwin's care and I always believed that he would be impacted by his prematurity and degree of oxygen instability during the first 2 -2 1/2 months of life. So it's not like a punch in the gut at all. It's something I've been emotional prepared for all along. I feel immensely grateful for both Serena and Edwin, and I am here for the long haul. We'll get there, it'll just be on their own terms and on their own time.
So here is a video montage of a few clips from Edwin practicing his with his walker on Friday. Daddy is standing behind him in many so he wouldn't go too fast and only get one giant step in before falling to his knees. So he helped guide the walker from Edwin going too forward too fast. But Edwin did walk from the french doors to where I'm sitting without anyone helping several times. I didn't get that on video though. It's not the "prettiest" video of a kiddo in a walker, but it a beautiful start to me :)
***And how could I have forgotten to tell you?!?! Serena had her modified barrium swallow, drank whole milk without ANY rice cereal and...... NO ASPIRATION!!! The surgery worked!!!! They x-rayed while she drank out her bottle, no aspiration or penetration! Turned x-ray off, let her drink, turned x-ray back on...NO aspiration into the airway! Hurray!!!!
Subscribe to:
Post Comments (Atom)
12 comments:
Fabulous news on Serena. I'm so happy to hear the surgery was a success.
Edwin is so cute in the walker. He crawls so well, it's hard to believe he's struggling with walking. Maybe with lots of practice things will change. Kinnick wouldn't put weight on her feet for the longest time. Now she loves to stand. She won't bend her legs to walk, but she stands. We were told to stand her up and shift to the right and allow weight on one side of her body and then do the same to the other. We were told this would help get her strength for walking later.
What do you mean it isn't the "prettiest" walking??? Crazy lady!!! It is fantastic and one of the most beautiful videos I have ever seen. When I read that, I certainly wasn't expecting to see all of the walking that I saw.
Here's my 3 cents worth (yeah I do think my opinion is worth a penny more than most :P). Obviously he wants to get off that walker and crawl because he is now an expert at it and he can fly that way. He will avoid walking with the walker because he is being forced to use muscles that he isn't accustomed to using. That will change with time and practice.
You are doing the right thing by having the orthotist look at his feet for the possibility of needing some supports on his legs and or ankles. Like I said before, they worked wonders for Caitlyn.
I will offer up a piece of advice and you can poo poo it if you want, I certainly won't be offended, God knows I don't offend easily. Consider a trip to Stride Right shoes for those old fashioned hard soled walking shoes that come up over the ankles in the mean time. I only say this because I frequently see him barefoot in your videos and pictures. Start getting him used to having something on his feet in case he does need the orthotics. Not to mention, the added ankle support may help him out a bit when he is walking. Also, it is fantabulous that your new PT brought over the walker for you to try with him. Now you need to corner her filling you in on how to get him into a proper walking position. INcluding how to position his hands and feet so that he is learning the appropriate motoric positions. And don't forget, language that you are using is so very important as well. Be consistent in the prompts that you give him so that he learns what it is you want from him every time you say it.
(Sorry, I am falling into therapist mode instead of just offering support. Hazard of the trade!)
Miss Serena....you rock! Way to go on not aspirating anymore!!!
BTW...that music was absolutely perfect for that video. It truly looked like a three ring circus going on there LOL
Hey Nancy,
Thanks for all your advice. I will definitely look into the shoes.
Our PT had told us that in order for a child to form an arch, they should not always be in shoes. Edwin wears in shoes outside and is barefoot in the house. But I will definitely look into that, especially since I think he will be needing AFOs.
The PT said for the first week or so just let Edwin get used to the walker and didn't give us too much advice on specifics. She didn't even really measure him to make sure the height was right (something I'm going to bring up when she comes again next week.) I think with more support for his ankles and more serious trials with it he will do better.
What a lovely video. Edwin Jr. is trying so hard!
Great news about Serena. So thankful the surgery worked!
Did you read the Worcester Magazine cover article this week? I actually taught with the mother of the kids featured in it. The little boy, Samuel, has CP. It was very interesting and heartfelt...
That's a LOVELY video! Heartfelt congratulations on the successful surgery for Serena too! And see, you were right to keep on at the PT for that walker. Mummy instincts are normally dead on and you've proved it again.
I think it's a lovely video too, and agree with a lot of what Nancy had to say. Also, I kind of remember an earlier discussion we had on our list about hip huggers---I believe Dakota wore them (wears them?) and that they really helped. I see a lot of hip flexion in Edwin's movements and wonder if he wouldn't do a lot better with his hips stabilized.
Otherwise, though--it's clear that Edwin enjoys his mobility and that he's getting the hang of things QUICKLY. And this makes me so happy.
And the news about Serena's swallow study is EXCELLENT.
Way to go, kiddos!
First of all, YEAH for Serena!!! That's fabulous news!!
Secondly, I think Edwin looks terrific in his walker! Riley did some of the same things over the first few days, even though he also took off and walked pretty quickly. He dropped down and knee walked in lots of times, too, though. I think Edwin looks fantastic in it! Has your PT been working on weight bearing activities on his hips, knees, and ankles? It looks like maybe he is not really aware that he needs to use those joints to hold himself up. I know that for Riley it was a combination of those joints being very low tone and hard for him to control (The DAFO's really helped there) and also him not even being aware that he was supposed to be in control of those joints. Our PT did some great work on weight bearing on those joints and that seemed to help.
By the way....I totally get what you are saying in your post. Our diagnosis was almost a relief. Sad, but still, an explanation. And I already knew in my gut what the answer was......
Hey guys,
yes, I really think weight bearing exercises would be great for Edwin. PT has not done any but I'll be sure to bring it up next week (I really think she needs to come weekly and I'm going to request that as well.) We'll be getting a new PT in 2-3 months, but for now we still have our current PT because everyone else's schedules are full.
The only time Edwin has stood is when he is in control (like up against a couch or his play area or crib.) He feels safe leaning against things if he needs to, or he drops to his knees if he needs a rest. So hopefully with the AFOs and some exercises to help with his hips, he will get more comfortable.
As for the hip helpers, I bought Edwin a paif several months ago, (when he wazs still belly crawling.) They didn't do anything for him at that time, and don't know if they would benefit him in his walker? I could certainly try that out.
Thanks again for all your help, suggestions, and support!
Woohoo Serena!!! What an answer to prayer that is. Hey what size are Edwin's feet? I have a pair of those walking shoes from Stride Rite that I got for Sam. You could try if they are the right size
Hey Steph,
I don't have any therapy advice, but Emery 'w' sits all of the time now, too, and I have to physically remove him from that position over and over. The one difference I notice between Emery and Edwin is that, like Abby said, he looks like he has some flexion. Emery's issues have always been that he's too tight in the hamstrings. His feet point out, too, and he was unstable standing and had a tendence to sway back and forth but it's getting better.
As far as a diagnosis, I do believe you will honestly have to fight for one, and since CP has such varying degrees some doctors hesitate to make the diagnosis. Would the diagnosis change his therapies at all?
Way to go Edwin! He's actually making better progress than Andrew did, it was a good month before he was able to take steps with his from when we got it and that was with it backwards!
Our pt actually said the knee walking was really good for them to build trunk muscles, balance, and hip strength.
So glad Serena's results were so good!!
Yay Serena!!
I think Edwin is such a doll, I love watching him get around, so what if it's not *pretty* look at how he's trying, he's gonna get it down and he's gonna just take off one day! As for the shoes, I think everyone has a different opinion on whether to put them in them or not. Kellars pt preferred that Kellar was barefooted, something about they use their feet when they are younger and learning to walk as a ohhh how did she word it, I am at a loss for words..haha..With barefeet they can feel the floor better or whatever they are stepping on, with shoes on they're just feeling the shoe, does that make sense? She took off his shoes one day and had me watch his toes, they were constantly *gripping* when he was standing, he could actually feel with them..Keep up the good work Edwin!!!
Post a Comment