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Discussion Starter · #1 ·
Okay, so I really need to have a good day and I just accidentally deleted the lengthy post I had written. Let's start over . . .<br><br>
Finn is 17 months old now. His background is that he had a vascular anomaly surgically removed at 9.5 months from his cerebellum. He is within "normal range" in all areas of development expect for gross motor, in which he is extremely behind. Finn still has difficulty with balance. He falls over several times a day. When he is sitting and throwing a ball or reaching for something, sometimes he falls over. Other times he corrects himself and prevents falling. He also falls from a standing position. He likes to pull himself up and is making beginning attempts to cruise along furniture, but when in this upright position he falls over too. Often he lands on his butt first and then hits the back of his head. I guess at least most of the time the fact that he lands on his butt first is a good thing. But nevertheless I think he is really frustrated by the falling and so am I. It is just hard to watch, over and over again. He has lots of bumps and bruises on his forehead too. I had really believed, and hoped, and prayed that at this point he wouldn't fall over anymore. Lately, I'm just having trouble seeing how Finn will ever standing independently or walk for that matter, if he still falls over so much. I'm worried about his language too. He only really makes "ma," "ba," and "da" sounds and these aren't always consistent. Some consistency and new words would be great! I guess over all I feel like we haven't had any breakthroughs lately. It doesn't help that a big mess is going on with our therapy plans, we seem to have yet another cold, it is still cold and rainy here, and Finn has been sleeping very poorly lately. I'm really spent. I should note too that for all its worth, Finn's developmental ped has said that he thinks Finn will walk someday, which of course we loved hearing! It's just hard however because I don't know if this doctor really knows how much Finn still falls over. We don't see him again until Finn is 2 in October. Not that it matters much anyway. I know that no doctor (or anyone else except God maybe) knows what Finn's future is. I just need something to hang on to and something to believe in when things are tough.<br><br>
Anyway, if you have any success stories to share, especially when it comes to low muscle tone, gross motor development, and improved balance, I'd love to here them! Just feeling pretty alone and forlorn around here . . .<br><br>
On a more positive note, we had a good trip to Maui. We got back about a week and a half ago. In case anyone is interested here is a link to the most recent blog post, which describes in part where Finn is at with his development.<br><br><a href="http://amazingfinn.com/finnsprogressblog/" target="_blank">http://amazingfinn.com/finnsprogressblog/</a><br><br>
And here's a link to the Gallery where we have February pictures.<br><br><a href="http://amazingfinn.com/gallery/february-2008/" target="_blank">http://amazingfinn.com/gallery/february-2008/</a><br><br>
THANKS MAMAS!
 

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Wow, your Finn looks wonderful, he seems so happy in the pictures! I have a Finn also, and he has tone problems, he is very loose in his hips and that def affects the way he walks, he looks like he is flouncing and he runs headfirst everywhere. I have read your blog and I am so excited to see his development. My Finn had a huge problem with balance when he was younger, he had inner ear problems and though I complained to every doctor we could find that he wasn't hearing us, it took until he was 10 months old to get tubes put in. We have pictures of him before his tubes and he would fall over unless he was completely supported, he couldn't roll over at all and he was the floppiest kid when held, he would almost fling himself in every direction while he tried to maneuver himself to things. Within four days after his tubes were put in we took him to the chiropractor and he was adjusted, the change was amazing, he could suddenly balance better and rolled over and sat up.... after months of trying and falling over. He is still a bit floppy and I don't think that he will ever be a very stiff child, or adult for that matter but he is improving. Our Finn was born at home UC and we transferred into the NICU an hour later, he was a face/brow presentation and spent 13 days in the NICU. The doctors and therapists that evaluated him when he was a baby had told us that they weren't sure what he would do, whether he would walk or what his troubles would be so we are very thankful with what he does. I think that our Finn is just on his own schedule and even though we would love to know what is causing his other problems, we will just have to wait and see !!<br>
I look at your little boy and I am so amazed with what the human body will do to compensate, he is Amazing!!!!<br>
Hope that you are feeling better....<br>
Laura
 

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Is he in PT?<br><br>
We saw a lot of improvement with the RIGHT PT. For the moment, we're not in PT, and again we are seeing regression. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
Other things I've heard that help are hippotherapy (is that the horse riding one?), swim-therapy, and other similar therapies.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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Discussion Starter · #4 ·
Thanks Laura (a.k.a. purplepaisleymama)! (I realize now you were the one kind enough to comment on our blog. Thanks!) Your thoughts and support are helpful.<br><br>
Yes, Finn is in PT and has been for about 11 months. I am actually in the process of re-vising our PT plan. I was frustrated at first but think we are now headed in the right direction. We have been doing PT about once a week at a clinic. We are also going to have some in-home services as well now. I'm excited to see how this new plan works out.<br><br>
When I think about how far Finn has come even from a few months ago, it is really encouraging. It is just hard because in some areas (i.e. balance) I haven't seen a lot of improvement. Granted, he didn't really even sit up until he was 11 months old -- so that fact that he can sit, pull himself up, etc. is huge. I guess I should focus on all of that and try to not get so discouraged when he does fall. Some days just seem better than others, IYKWIM?
 

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Discussion Starter · #5 ·
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<div>Originally Posted by <strong>mamaverdi</strong> <a href="/community/forum/post/10757732"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
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Other things I've heard that help are hippotherapy (is that the horse riding one?), swim-therapy, and other similar therapies.<br></div>
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I think he is a bit young for hippotherapy and I'm incredibly allergic to horses so I don't think that would work anyway for our family. (Horses are the only I allergy I have. It is very strange). He loves the water but I haven't come across any kind of "therapy" for someone his age. But I'm always on the look out for something like that. I think we should do regular Parent-Tot swim classes with him but we just need to find the right time.
 

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Have you tried finding a PT who specializes in brain trauma in kids? I'm looking into this myself recently, and it's a really small group.<br><br>
Sorry about the horse allergy. I have an allergy to being up that high and feeling like I'm gonna fall off. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/bag.gif" style="border:0px solid;" title="Bag">:<br><br>
You are probably also followed by a neurologist WRT issues that could be related to brain surgery, like seizure activity?<br><br>
I'm sorry I sound so short. Things are crazy here.<br><br>
Your son is adorable, and while yeah, everyone says focus on the positive, I'm not that cheery either.
 

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Discussion Starter · #7 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>mamaverdi</strong> <a href="/community/forum/post/10759463"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Have you tried finding a PT who specializes in brain trauma in kids? I'm looking into this myself recently, and it's a really small group.<br><br>
Sorry about the horse allergy. I have an allergy to being up that high and feeling like I'm gonna fall off. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/bag.gif" style="border:0px solid;" title="Bag">:<br><br>
You are probably also followed by a neurologist WRT issues that could be related to brain surgery, like seizure activity?<br><br>
I'm sorry I sound so short. Things are crazy here.<br><br>
Your son is adorable, and while yeah, everyone says focus on the positive, I'm not that cheery either.</div>
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I have looked into a PT for kids with brain trauma specifically and I found one place but they were located far away and only took private insurance. It just wasn't going to work. Again, however, I am excited about this new therapy place we are working with. We should now have services in a clinic with the therapist we have been seeing and a new one in the home.<br><br>
We actually don't see a neurologist. We just see neurosurgeons. And hopefully we won't have to see them much any more. We will have another MRI done in October and then an angiogram done in two years, but really we shouldn't need to see any neurogsurgeons at all (as long as there are no more vascular anomalies). And no one thinks we need to see an neurologist for any reason. It is VERY rare to ever have seizures associated with the cerebellum and fortunately the rest of Finn's noggin looks A-Okay. And granted, I know they went through other parts of the brain to get to the cerebellum, we have never been concerned about seizures.<br><br>
Trying to be positive again today . . . it doesn't help that both DH and I are getting sicker and sicker by the minute with this bad cold and we have this really important b-day party to go to this weekend. DD (almost 4) will be crushed if we are too sick to go. Finn was up ALL NIGHT too. ARggghhh!
 
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