Therapy Update

20120816-053050.jpgLook how much he’s grown! He’s sitting up pretty well and working so hard to hold that head up! So proud of him!

Spoke to his OT yesterday- her husbands heart attack was pretty severe and they aren’t out of the woods yet. Lifting them up in prayer and hoping they can find healing. She’s coming back to work out of necessity and for the distraction but I’m not sure how long she’s back for. In about a weeks time she wants to have both of Eli’s sessions. Busy busy! Today we will see her so we will go from there.
Eli is still on 2 waiting lists for PT and ST private services and I’m in talks with another place nearby- working out insurance details behind the scenes.

I’ve recently had a lot of people asking me why I’m seeking services for Eli. It’s a huge struggle and he’s on target for milestones, so why bother?
PT and ST won’t make Eli do anything faster but it will help him do things better. He will learn the correct way to achieve each milestone/goal and we will have less corrections to make later.

Kiddos with low muscle tone often overcompensate for low tone by using the incorrect muscles to achieve a goal. For example- right now during tummy time, Eli is relying heavily on his ab muscles. His head and neck come up fine but he winds up doing a plank and puts his booty in the air too. It makes tummy time more of a challenge even if it does look cute. Lol it’s not the proper way to do it. So we learn to correct it and help make tummy time more successful. If I didn’t have services I wouldn’t know to even correct it. So it’s like building blocks for what he’s already doing. Hugely important and worth the fight!

Speaking of resources, I’ve also recently had a lot of parents contacting me because of a prenatal diagnosis or the MaterniT21 test.
I’m wondering, would more resources be helpful to you? I’m all about sharing the knowledge and I’m a research freak…would therapy videos help? Would other websites and helpful information help? let me know what you think! Having that kind of stuff all in one place seems like a good idea. 🙂

4 more days until I go back to work full time. Where has the summer gone?

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12 Replies to “Therapy Update”

  1. I’m 10 weeks pregnant and our Dr said this week that we need to decide if we want to do the NT scan with a blood test, which would determine the need for an MaterniT21. (They didn’t even offer the amnio, which I thought was interesting) My husband and I are really confused, mainly with how to make the decision. So yes, I think more information would be great! Was knowing Eli had ds worth the anxiety created by the testing? We want so badly to enjoy this pregnancy as our last one only lasted 28 weeks (we still have a beautiful girl to show for it!) and this time around things are pretty scary. But we also want to enjoy the birth, because we didn’t have that moment as a family last time. And just because who doesn’t want to enjoy that? I have MTHFR, and after reading your info on that, I’m a little more nervous about the possibility of ds. Any suggestions or thoughts?
    Thanks so much!

    1. Congrats on your new little one! 🙂
      My advice to anyone considering testing is to ask yourself if the results matter in the end…will you continue the pregnancy regardless of the results? It’s easy to ask that when you don’t think there is anything that could even be “wrong”…so you have to seriously consider what the choice of continuing a pregnancy really means.
      As you know, being a parent is already difficult. And we have been very blessed that Eli is happy and healthy. Unfortuntately this is not always the case with any kiddo no matter what.
      Chances are, you have nothing to worry about.

      If I had it to do over again I would not do any genetic testing or even do the NT scan. I would go straight for the MaterniT21 and be done. Eli had NO physical markers on ultrasounds- even the 4D ultrasounds. Ultrasound is not a good way to determine the need for any testing this early in the pregnancy.
      With the MaterniT21 you would know for sure and you could be prepared either way you decide.

      I liked knowing before Eli got here that he would have Ds. Sure, it was hard to deal with during the pregnancy but by the time he got here we were prepared, we had researched and we celebrated his birth.

      As for the MTHFR, it depends on which ones you have- I have a dear friend who is pg now and has the combo of MTHFR that puts her at an increased risk for her baby to have Ds. He does not have it. 🙂 So try not to stress about that. The real issue is to test or not to test. 🙂

      At the end of the day all I can say is that you see Eli and how awesome he is- only you can make a decision about your baby. 🙂 Best of luck! I plan to work on more resources that will hopefully be helpful.

      1. Thanks for responding. I know that we want this baby no matter how the tests would come out. I didn’t think about skipping straight the the MaterniT21 test. I will definitely find out if that’s an option. I think I would feel better about that, especially knowing that the NT scans are not dependable. Thanks! And yes, Eli is a cutie! Thanks for sharing him with us!

      2. Read Ashley’s old posts! What other info would help?

        I recommend reading both of the brochures (new parents and family/friends) at http://www.downsyndromepregancy.org

        There is a fun & supportive community waiting to welcome you, consider connecting in person with a family in your area–I’d say a preteen with Down syndrome — to get some perspective and confidence to help you connect easier at birth if you are in our group. Don’t hesitate, we love showing how neat our kids are-it’s fun and we are eager to take that time to meet people.

        Consider giving birth at a hospital with the best NICU to be safest

        I declined definitive prenatal testing too despite high risk (2%) of DS and am thrilled to have preserved unity & harmony within my extended family & friends amongst those people who disagree & who might feel bad or I might judge for their opinions. I can have a healthier debate now with anyone given my additional perspective that is growing & changing still as a mom of a HEALTHY four year old son with DS

      3. Yes, avoidance is my family’s prime defense mechanism which I don’t think works best but it works well enough at times when it’s needed (barring lots of group “extended family” therapy sessions–lol!!)

      4. I called my dr’s office about just doing the MaterniT21 and the nurse thinks it should be ok but will be checking with the dr this week. I am feeling good about that decision, so thanks for your input! Just wanted to let you know that I tagged you in my post today, over at Mama Poppyseed (http://mamapoppyseed.blogspot.com/).
        Thanks again!

      5. Clara- I love your blog! Thanks for the shout out- tears girl, tears! 🙂 your baby is going to be amazing no matter what happens but I’m sure you have nothing to worry about. Seriously! So enjoy your pregnancy- I look forward to hearing the results and following your journey. 🙂

  2. I am just admiring how cute Eli looks.. he has changed quite a bit, and he looks so handsome. I admire your dedication and how much you bring to others as well. Thanks for sharing, that has helped me a lot….

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