How have you all been? I know I've been MIA for a little bit. There are some great and not so great changes. The not so great changes are about Isaiah. While he's been doing awesome running around (with a few falls here and there) he has now started to put the weight on the inside of his right foot, therefore having a flat foot. He has also started to somewhat drag his right foot a little. The flat foot we intend to fix with an arch cookie. Tomorrow I need to call to have them custom made. I'm not sure what to do about him dragging his foot....hopefully this month's PT consult can shed a light on it. My bigger concern however is Isaiah's speech. I feel like he's been regressing. He used to say quite a couple of words by himself without me having to say them first. Milk, mama and daddy were some of them. Now he will either repeat them or not say them at all. Milk he won't say at all. We caught him say and sign please Friday night at a friend's house but that's the only time so far he's said it. He will however, say the word heiss, German for hot, because Nia says it all the time. My hope is that he's just going through a phase but my biggest fear is that he may have had a seizure we didn't catch that caused this, or worse, a mini stroke. Sometimes the signs of a seizure are not evident if it's not one of those with jerking movements, etc. And since he is still so young the signs of him having a stroke may be different than in an adult. He can't talk well enough yet to let me know if his head is hurting or if he's having a weird feeling in his arm for instance. I highly doubt it's the latter but we do live with that fear every day. Fact is, once you've had a stroke, there's a possibility you might have another at some point. My grandmother had several mini strokes that almost went unnoticed. I don't know how I'd feel if I didn't notice Isaiah having one! Anyway. We've asked for a speech consult with IDP to see what's going on and hopefully it's nothing.
Now to the great news! Minot's Infant Development Program offered me the position of the Experienced Parent Specialist - quite a tongue twister huh! Say it fast 5 times! Lol. So here's what I do in a nutshell: I talk to families whose kids are enrolled in IDP and answer questions they might have about the program or where to find information and support. I meet with parents of babies who are in the NICU and talk to them in a group setting about certain topics and individually if they like. I also write a quarterly newsletter called "Side by Side" and host a monthly playgroup. The playgroup I still need to figure out where to do, living on base makes that part a bit difficult. Well, and this weather....ah, spring, how I long for you! Basically, I am emotional, mental and informational support where possible and needed. I don't consider myself experienced in this area at all, we've only had 17 months on this roller coaster but I do know a thing or two about the worries, the feelings of sadness, guilt, hope and helplessness. So I hope I can be of good use to the program and the parents.
As you guys know, I try to do fundraisers here and there to raise money for CHASA and awareness for Pediatric Stroke. The cookie auction, Pennies for Pediatric Stroke and Isaiah's birthday party fundraiser were a great success. This year I will be doing some of them again. The Pennies for Pediatric Stroke is in the works along with some other things, which will be announced once they're set in stone. As always, you can make a donation to Isaiah's fundraising page at any time! Just click on the widget in the top left corner ;)
I would love to do a silent auction this year so if you're a business owner and would like to donate an item, feel free to contact me. For the ones who are local, we may be doing a base wide fundraiser where this might be a part of the event. If we get base approval that is. If not, I will host the auction on this blog. You may also know that I write petition each year to the governor to announce May Pediatric Stroke Awareness Month, wish me luck that this will go smoother this year, lol.
Well, that's it for now. As usual, thanks for following my humble blog!
Love,
