"Following Ian''

Thank you all for your support over the last two years! You have truly been a comfort to me. Forgive my absence on my blog. Life gets in the way of blogging! ;0) We are doing ok. Trying to weather the storm of the ups and downs that come along with Ds. Ian had adenoids removed and tubes in again (2nd set) this past July and now they think his hearing is deteriorating in his left ear. And the hits just keep on coming! :0(

I want to share something with you. Tom is making a video which is part documentary and part personal story on our Ian and on Ds. He has such an amazing talent capturing emotions on tape. I hope you'll take a look. You can view a couple of excerpts on Tom's blog:

www.narrowridge.blogspot.com

A Little Revelation

I was lying in bed last night trying to figure out just what it was that made this review better than the rest. It is because I now KNOW, after working with the same team for almost two years, that the ladies that help Ian really care about him and want what is best for him. And,as Elbog put it when writing about his Emma, when it comes down to it, Ian is Ian, no matter where he is developmentally, we love him for who he is.

The Results

First of all, thank you very much for your encouraging words concerning Ian's eval. It went surprisingly well! I guess it's not as traumatic as it used to be for me. This is my/his third review and I know all his care providers...I guess that must be why it wasn't as traumatic as past ones have been? I don't know...It also really helped me that y'all have done this too, "Strength in numbers"!

Ian isn't too far behind his "typical" contemporaries. He's maybe 2-3mos. behind in everything except fine motor skills, so we are stepping up the OT visits. We are also now going to include speech therapy (we were solely doing deaf and hard of hearing therapy but now that he's older we want him to speak! :0)

Thank you again for being on this journey with me. It helps A LOT!!!

Those Dreaded Developmental Reviews!

Those reviews make me SO mad. We are having one for Ian tomorrow, the whole troop of therapists will be here, ugh! Don't get me wrong is SO appreciate what they do for our little guy, I just feel like Ian is a monkey on display at the zoo or something. Now, about those reviews, why on earth do they compare Ian to standards that he will NEVER meet? It's SO frustrating. Ok, sure, it is good to see where he is in occasional reference to typical kids, but let's judge him on a scale that is set up for him, aka kids with Ds. I told Ian's teacher about the Ds developmental chart and she said she'd look into it, but I haven't heard a word about it since. Wish me luck tomorrow. I hope I can hold my anger back!

The Magic Pill

Tom and I were talking this morning about how our lives have changed now that we have Ian. I was telling him that it feels like we have three kids: Silvi, Ian and Down syndrome (I know, it's kind of an odd analogy, but...) Ds takes so much time, energy and Dr. appointments that it almost equals a whole other child's worth of worries etc.

Tom asked me if there was a magic pill that I could give Ian that would make his Ds disappear. When Ian was first born I said I didn't think so because Ds is part of who Ian is, but now I DEFINITELY would give him that magic pill. NO kid should ever have to be in the hospital for two weeks after being born (with tubes coming out of every orafice), have heart surgery at six weeks of age, be hospitalized for respiratory failure, have multiple ear tube surgeries as well as get ridiculed from others for years to come (and there are for sure more surgeries/complications ahead). So YES, I would give my Ian the magic pill if it would spare him all that pain.

Merde!

For those of you who don't know French, merde means sh*t! I say this dirty word because we found out that Ian needs to have tubes put in again. I always heard the horror stories of our wee ones with Ds needing five and six sets of tubes, but of course we think, "oh, that won't happen to my kid, surely". I guess we're not infallible after all! ;0( Ian goes in for a new set of tubes on May 11. I hate the pain he's had and will have to endure. It's not fair.
-Thanks for "listening" y'all.

I'm Still Here ;0)

Hi all, forgive my unforgivable absence on here! Two kids, one with special needs, the DARKNESS of winter...all my reasons for not writing more. When WILL this blasted winter end. Minnesota winters are just brutal! It should be over soon though, knock on wood!

I'll just give you an update of what's happened since I last wrote. Ian had ear tube surgery (just once so far!) That didn't fix his hearing issues, so he needed hearing aids. For all of November and December at least one of us in the family had the flu/cold/cough, it was crazy. Then a few days after Christmas Ian was taken via ambulance to the ER at Children's Hospital with respiratory failure due to bronchialitis. He also had an ear infection (he was bleeding out his ear) and asthma. He spent a few days in the ICU and then a few more in regular care. To top it off Silvi had pneumonia at the same time. So that started off the New Year just great for us! NOT!

We're all doing well now, again knock on wood! AND we've even made it to the lake and park a few times. We had some unseasonably warm weather a couple of weeks back. It made me feel like life still exists out there and that Spring will indeed come again.

Good to be in touch with you all again! I will try not to be absent this long again ;0)