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DRAGONMOUNT

A WHEEL OF TIME COMMUNITY
Millon

yeah........so,...uhhhhh......

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So far we absolutely adore our therapists and they LOVE Wyatt. When we started the two were super excited to work with him as he is the youngest of all the kids they work with. According to them he is always showing improvement. I think we need more help though. We are looking to start him with speech therapy because we are having an extraordinarily hard time getting Wyatt to transition from purees to table foods. EVERYTHING seems to make him gag or choke. It's frickin terrifying. We use a Nook brush now before feeding him to try and get his mouth. . . prepped? lol. .for eating. Just kind of stimulate his mouth. We've been told speech therapy can help with it. I feel absolutely terrible for not being home for any of this. I've never hated working so much as I do now. I feel terrible that the missus has to handle all this basically alone. Two therapists coming to the house, now a special ed teacher and we're looking to bring a speech therapist in. Yes, it's all good and needful stuff, but it's a lot going on and I feel like I am not helping enough. Just gotta keep doing all I can, I guess, and try to get over this guilt. 

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I'm so glad you guys are already in early intervention! It makes such a huge difference, plus it gives you people to help you along the way. The journey is hard but with the right people in your corner, it's much easier. PM me and we'll talk food strategies... I dealt with the same with my lil man. I can walk you through a transition diet and feel free to have your missus contact me as well! I've been there and am still there in a lot of ways.

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*Hug* you're helping when you are home, and you are helping to provide him with these therapies. (Do you guys get scholarships or any sort of financial aid for the services you use? There are loads of them available.)

 

He's improving, he is being provided for, and that is what matters. There may be a time when you can be more involved in the during the day therapies, but for now you are a parent who is still very active and involved in his child's life, and that is huge. 

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So far we absolutely adore our therapists and they LOVE Wyatt. When we started the two were super excited to work with him as he is the youngest of all the kids they work with. According to them he is always showing improvement. I think we need more help though. We are looking to start him with speech therapy because we are having an extraordinarily hard time getting Wyatt to transition from purees to table foods. EVERYTHING seems to make him gag or choke. It's frickin terrifying. We use a Nook brush now before feeding him to try and get his mouth. . . prepped? lol. .for eating. Just kind of stimulate his mouth. We've been told speech therapy can help with it. I feel absolutely terrible for not being home for any of this. I've never hated working so much as I do now. I feel terrible that the missus has to handle all this basically alone. Two therapists coming to the house, now a special ed teacher and we're looking to bring a speech therapist in. Yes, it's all good and needful stuff, but it's a lot going on and I feel like I am not helping enough. Just gotta keep doing all I can, I guess, and try to get over this guilt. 

 

My youngest son had some of the same issues.  We used the same kind of "brush" to desensitize his mouth so he would accept different textures. Our OT gave it to us. He had lots of gagging and choking too.

 

With work and intervention it will get better.

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So, yesterday was a pretty rough day. Wyatt had his cardiologist appointment. We are definitely looking at some type of heart surgery in about a year. What made it worse was the news that the posterior wall of the opening is becoming tenuous now instead of firming as had been first thought. That makes the procedure where they go in through his groin and put a plug in the opening less an option and we may be looking at open heart surgery. Thankfully, the Dr said, we have time on our side for the moment as any symptoms that may occur from the ASD SHOULDN'T manifest until he's about 3-4 years old. The Dr wants us to come back in 6 months and see if the opening has diminished or the posterior of the opening firm up and we will find out what type of surgery he is going to need. Parenting is hard. . . 

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Hey, Mills, just saw this. I can't imagine it's ever easy to have your child go through surgery, much less heart surgery.

 

Thoughts and prayers are with you. Young one's recover quickly.

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We're trying to hold faith to what the cardio Dr said. With either surgery it's a very routine bit of work that's been done thousands of times and children are fast healers. So, there's some comfort in that but I can't ever see operations being an ideal situation. Thanks for the good juju

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Long time since I wrote anything in here. wow

 

 

I have successfully kept a human alive for 3 WHOLE YEARS! Incredible, innit? We just celebrated Wyatt's 3rd birthday on the 16th. 13 days before his open heart surgery. Startin the year out with a bang, right? Any and all well wishes, prayers, non-denominational positive thoughts and animal sacrifices will gladly be taken as I foresee a humiliating level worry on my part. Serenity now! We are still positive even though it has been a REALLY rough month in the missus' and I's support groups. Too many new angels in too short a time. Suppose that's what you lose on the round abouts with support groups. In for a penny in for a pound. We are still confident in our surgical team. Not so much in our organizational skills as neither of us has EVER spent so much time away from home as this and we're just kinda staring at our empty suitcases. lol We'll get it together I am sure it's just a bit daunting.

 

So, . . . .yeah. I don't know whether I am coming or going or even what day of the week it is sometimes. GOt a long hard bit of work ahead of us.

 

the short of it for those just tuning in. Son has an ASD. Needs open heart surgery to manually close it due to the shape of the hole. Was born with Down Syndrome. He's. . . .kind of a big deal. Know'm sayin? Best case scenario, we're in and out within 5 days. The average hospital stay we've found from networking with parents is bout 7-10 days in hospital. So. Yeah. BEAST MODE BABY!! WHOOOOOO!!

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Has it seriously been 3 years?????? O_O

 

My thoughts are definitely with you and your family, Mills *hugs tight* ... Good luck!

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I'm so sorry that you and your family have to go through this.

 

Love to you all.

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Aw shucks ya'll. Goin ta give me the vapors you keep carryin'on over lil'ol me like this. 

 

 

 

 

Keep goin. 

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