Monday, February 11, 2013

looking...

next month we are going to the Down syndrome clinic in Denver...we are seeing many doctors and having a sleep study done...but I am going back and forth if we should...it seemed like a good idea...it seemed like the right thing to do...I want to make sure Maddie is good...I want to make sure she is hearing properly...I want to see where she is with speech and motor development...if she needs orthoidics...and if she has sleep apnea...in that couple of days she will see great doctors and therapists...that work with Down syndrome daily...but I do not want to search for something that is not wrong...but then I do not want to stand back and do nothing because I am scared of another diagnosis...I get so jittery on if we should or not...Chad is indifferent...I do not want to be that mom...the mom that has to go to doctors and be hyper vigilant about my child...I would not do this for Max because he is fine...with Maddie she gets a cold I call the doctor I ask him about everything vitamins, sleep, eating...with Max he gets a cold I tell him he is fine and to cover his mouth and wash his hands...I get that the start with Maddie was full of suprises and unknowns...and because of that I am head shy when it comes to more or different...we are going to Children's Hospital and we were at Prespertarian/St. Luke's Hospital for all her other surgeries...so change is scary and what ifs...when I made the appointments my reasoning I thought was sound...Maddie snores when she sleeps and is very tired...lets try to rule out sleep apnea considering she is on thyroid medications and she should have a tad more energy...her feet...they curve in and down...I put her in good solid shoes daily not cute ones like I would like so it helps keep her balance and her feet from falling or drooping...she does good with them...but I want to know if it truly is ok or if we need to do more...her hearing was good a couple of years ago...but I know things change with hearing and I want to rule out problems for speech...with all our speech therapists I would like to get them all to have a good starting point...I am not sure why I get scared...why I try to talk myself out of it....remembering it is about Maddie and not about my feelings is at times difficult...so we will spend some of our spring break in the hospital just like last year but hopefully a better outcome and not so dramatic...I want this to be a positive reassuring visit...I do not want to get my hopes up to high...it amazes me that people that work with families still refer to Down syndrome in slang terms...but then again it could be me being to sensitive...wow am i wishy washy

7 comments:

  1. I thought it was worthwhile. It's always nice to talk to people who know what they are doing when it comes to Ds. I think you should definitely go even though I know you are doing all the right things, it helps to have a second opinion. And if you have concerns, I promise they will be a big help to you. We have a sleep study there next month too. Beginning of march. I am hoping for some good news too. I'd say we should meet up but if you are there over spring break, we'll be out of town :(

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  2. Did Maddie have her tonsils out? I know Kristen starting snoring with periods of apnea and that all went away after the tonsils out...at about four years old. We did the clinic visit when Kristen was 18 months. It was scary, overwhelming, but overall good. Hang in there...you are a great momma! :)

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  3. I think wishy washy and mom are synonyms. Sleep apnea can be dangerous and snoring *can* be a symptom but it also does not mean she has it. My son did/does and they were more concerned with what he did in his sleep ( ie he rotated in a circle from waking up and moving)than the snoring. Snoring could just be an adenoid/tonsil problem as well. At any rate you should have some answers from the sleep study. Is one of the docs and ENT that you are seeing? Good Luck

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  4. Ahh so glad you mentioned tiredness, Owen has that too and he also is on thyroxine, I worry about anemia or apnea...still need to do a sleep study on him - he doesn't snore.

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    1. There are a lot of "tuning" small but not insignificant things that are always on my mind with Owens health (and behavior!). And getting things like blood tests or new orthotics are like some kind of terrible torture (well I will consider blood tests re pretty horrible but orthotics??) for him, so each new test or whatever is met with a level of dread from me.....
      Anyhow good luck at the fabulous Ds clinic nothing like that here in Australia.

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  5. I am a little jealous that you guys have "Ds" clinics down there. We don't have that here either. I think it would be a good idea to go and just check through everything...Not the funniest way to spend a spring break, but probably worth the peace of mind. Good luck, and keep us posted!

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  6. Ug...Did I just write "Funniest" way? I meant funnest. lol

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