Saturday, December 3, 2011

Round Three?

The MRI is booked for December 15 with a follow up appointment on December 21, temporarily. They're still working out times since they want to do a full head and spine and that will take two appointment slots instead of the one they had originally planned on.

In the meantime, I have at least a dozen points in every day where I am convinced that we cannot possibly wait that long, something is wrong NOW. And then I have at least a dozen points in every day where I am convinced that I am overreacting because Kingsley is clearly as awesome as ever and not a thing is wrong with him.

Our concerns are that he had some sudden bowel and bladder changes in late September, followed by some rapid tightening in his hamstrings and odd twitching in his calf (tethered cord). He's also banging his head and grabbing/hitting his ears (shunt). He's waking at night, crying and he's much more irritable than his usual cheerful self (shunt). He's sleeping less and is eating less (shunt/Chiari). His language peaked and then has regressed, yet again (no clue). He's arching backwards in his Bumbobile and stander (Chiari).

On the other hand, he's teething and has been for about a month. His molar FINALLY broke through last night. He grabs both ears equally (his shunt is behind his right ear) and hits his head when he's frustrated, not really out of the blue (common in kids without language). His bladder stuff is all back to normal, his bowel stuff resolved when I dropped his PEG dose a little bit. He's fascinated with exploring his world now in both sets of wheels and seeing it from all angles - now that that is finally possible. When I'm with him or the girls are home, he's his usual self. When I go check to see why he's crying at night, he's all smiles and snuggles the second I get him in the rocker with me.

I just. don't. know.

While I am not remotely looking forward to putting him through another MRI, I am anxious to get answers.  My house is benefiting from the stress, but my wallet is not.  ;) I'm blazing through my list of Things We Need Done Before We Move. Christmas shopping is nearly done and if all goes well, the Christmas tree/decorations will go up in the next couple of days. I need the distraction or my mind takes me to places I can't function in. It doesn't matter. Either he's fine or he's not fine, but he will be.

Tomorrow, we meet Santa. I predict a lot of screaming. :)


  1. NO NO NO NO NO!!!! I'm praying you get the best Christmas present ever- that GIANT weight lifted off your shoulders!

  2. Praying it's nothing. It's got to be nothing.

  3. I so know how you feel Jill! We are going through the exact same thing at the minute! It's just horrible when we just don't know. We are hoping to get an MRI soon too to try to figure out why Caitlin legs are weakening. I pray and hope that both our kiddos are just fine but as you said - if they aren't - they will be. Lots of love from us and enjoy meeting Santa! :) :) xx

  4. I've been reading alond as we're embarking on our SB journey with this 7th baby (due Jan 20th, most likely coming this month as hydrocephalus has started). I only have a minute and wanted to suggest looking into sign language to help with the language frustrations. We've used it for several things with our other children, including one child who was nonverbal at age 2 (couldn't even say mama or dada). His frustration level was through the roof (and so he tantrumed a ton). Even giving them just a few basic signs helps. We use the Signing Time DVDs (the first dvd in Series One is a great place to start, or the first in the Baby Signing Time series, as they both cover a lot of those first signs you desparately need for basic communication). You can also find things online for free to teach you, which you can then teach him, but the Signing Time dvds are our family's favorite.

    Hope that helps, even if it is just a temporary measure while his verbal communication develops!

  5. Praying for you guys! We love Kingsley in this house. Oliver always recognizes when I'm reading your's those eyes :) he's starting to know a lot of our blog friends! He will say, "mama, does he have an owie on his back like Palmer?" it's crazy how much he picks up on! Thinking of you. XO

  6. Keeping you guys in our thoughts, I know how hard it is to have to guess what is going on and it sucks. Hopefully he is just fooling with you and all is ok.

  7. Mom told me about all this today. I feel for you Jillsy. I am wishing for the best possible results for little Kinger. xoxo

  8. I'm sending you (((HUGS))) because that's all I know how to do. Lots and lots of hugs.

  9. Again I hope there isn't anything going on with Kingsley (playing catch up with posts...). It is so hard because you could explain things away as something related to medical on one hand and totally unrelated on the other. I hope everything goes smoothly for the MRI and that it is just related to his teething. Did you buy a new house? Or are you just packing stuff up in preparation? Hugs to all of you!

  10. Keeping sweet Kingsley in my thoughts and prayers and hoping that you have some answers soon.

  11. Hang in there Kinger and Momma! We are thinking of you often and praying for answers with wither a sigh of relief or a solution! Hugs and kisses to that sweet little trooper. And just to let you know - you are not alone in our "we don't know" slogan. It's the worst part of this SB club we're in. But it's our slogan nonetheless. Jet's language has always come in spurts - does all this new stuff then BAM drops it and refuses. Not to mention his eating, sleeping regimen goes wacky from time to time with no real explanation. Don't know what it's all about but gotta love that toddler independence. ;) And teething is a doozie. Still waiting on our 2 year molars. Although then I'll have to stop blaming them for everything. lol. HUGS!!! Keep us posted!

  12. Keeping you in my thoughts and prayers

  13. Sending best of wishes for a hospital free Christmas Season, and blessings on your family.


  14. Hello and Happy Holidays,

    I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

    Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

    I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at and visit This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

    Warmest regards and happy holidays,


  15. My fingers and toes are crossed for you and Kingsley that they don’t have to spend Christmas in the hospital


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