Monday, January 29, 2018

Tessie Testing Update

Today was quite the day and quite a few prayers were answered as things began to fall into place, in the most perfect order I could have possibly imagined.

This was a huge relief:

Now if she would just kick this fever/respiratory thing she has going on, that would be wonderful!


  1. I wrote to you a while back about the Novena of Surrender, and sent you a link. It was when you were trying to get to Boston and things were going wrong - flights cancelled and so on.

    And so today when I see this, I hope you really did pray that novena back then, and kept (and keep) praying it, because I swear to you, this novena WORKS, in the sense that God seems to do miracles in response to it...miracles in the sense that what seems impossible gets worked out. It seems like it's a prayer of trust, and God works with our willingness to trust Him in our most difficult and impossible needs, in things REALLY serious and important, and to walk us through the winding, twisting paths to His good and holy will for us.


    You want your kids to trust you when they are afraid and very uncertain. And it seems God wants us to trust Him in the same way.

    I'm so glad this mini-miracle happened, not only for Tessie's sake, but to show you God is really listening, and cares. Trust God. He will bless you and your family in your most desperate needs.

    God bless. ~Bonnie

    1. "You want your kids to trust you when they are afraid and very uncertain. And it seems God wants us to trust Him in the same way."

      I think I've felt this so much lately! Which isn't always easy to remember, but most definitely can be felt in times like when the third flight was canceled and the way things ended up was really much better than what I had planned (I was so thankful Paul was there).

  2. Is there any correlation between Tessie's sleep apnea and Autism? What about Tessie with James' hypotonia and Maggie's Autism? I remember you saying before there could be an undiscovered genetic component. Is that still the leading thought? And Sadie used to have that reading issue where the book pages had to be on certain sides of her vision or something? And wasn't Patch in speech therapy for a while too? Is there some underlying factor they've identified? Okay, one last question: Did James have his sleep study yet? Soooo happy for you and Tessie and these answered prayers!

    1. Tessie's doctor thinks there must be, in that central apnea, without prematurity and without any other cause is so incredibly rare, and that combined with other developmental delays is so rare, plus the family history family being so extensive.

      And yeah, it's like Sadie has ADHD and major gross motor delays that put her in the 2nd percentile for gross motor, plus pretty huge speech delays that had her at like 2 years when she was 6. Maggie has all of Maggie's stuff, and then Patch just has fine motor delays and a speech delay (I have an IEP meeting for him this week to get him back into speech. They said they weren't noticing anything in school, but I asked for an eval and it sounds like he qualifies because he says he's going twice a week now). And James with his hypotonia, and hyperflexibility, and severe tibial torsion, and when he was smaller weakness on his left side, is the odd one out since all his other skills are normal, but when he saw a geneticist the geneticist told me he thought it was the other side of the same coin of whatever is going on with Maggie.

      So all their doctors now to seem to agree that there is something genetic and they said I could pick between Devos and U of M (which was such a hard choice and then I spent hour wondering if I'd made the right one), right then for Tessie to go if I wanted further genetic testing but we haven't heard anything since then, so when I go on Friday I think I'll ask if the referral was sent or not... and if it isn't I think I may have changed my mind on where we want to go (with U of M being so much closer).

      And I need to call up about the sleep study because they still haven't called us to schedule it and they were supposed to do that last week! I need a schedule to remember what to schedule!

  3. Hi Cammie,
    The comment from your geneticist seeing a link between James and Maggie is interesting. Hypermobility with hypotonia is another thing that our daughter was diagnosed with as a baby. She walked at 20mo, and the doctors said it was probably because of her joint hyperflexibility which made her have problems with balancing herself. She still is very flexible, much to the dismay of her older sisters who do gymnastics and would love to be able to do the splits as easily as she does !
    I sent you an meail a while back, don't know if you saw it.
    Take care


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