Tue 17 Jul 2007
Paralyzed
Posted by Jane under Updates
[16] Comments
I am having the hardest time shaking my anxiety about Ramona’s spine. The MRI had to be rescheduled for August because they decided she needed to be under general anesthesia for the test. We will see the neurosurgeon this coming Monday for a consult. But in the meantime I just can’t stop thinking about it.
One day I’m convinced it’s nothing and the next I’m sure she’ll need surgery. I feel dumb for not realizing that her dimple may be a problem and a little angry that no doctor has noticed it before. The surgery to release her cord, if it is tethered, would only halt any nerve damage, not correct damage that has already taken place. I can’t help but worry, “What if she never walks? What if she never gets bowel and bladder control? What if she’s in constant pain?”
So I’m a mess today. But I’d also like to share some good news from the past week. Ramona is completely off the methadone and ativan. She is gaining weight again, she’s 17lbs 9oz. She’s off of her continuous night feed. These are all good things and prayers answered.
Because of the issue with her spine we have cancelled the G tube placement for now and are holding off on the “helmet” too. Please pray that all of these things are working for the good. Please pray that the timing of all of this is right for Ramona. Please pray that my mother’s heart will be able to send her back to surgery, if need be, without breaking into a million pieces.
Love, Jane.
All your worries and feelings show just what an amazing mommy you are Jane. My prayers continue to go up for your family.
Dear Andy, Dear Jane,
I know what it feels like to be overwhelmed by the “what ifs”. It feels awful!
May I suggest: a “deep breath” & iTunes – whatever suits you at the moment.
Step by step, you are doing a great job for Ramona.
I hold you close in thought & prayer.
Dear Jane
When I read your update today what came to me was “breathe.” And then of course what came to me was, “well HOW?” and I don’t know…except maybe a metaphorical iron lung? lol
If there is any way for us as your community to be your iron lung today babe, then that is what we want to be for you…we’ll wrap ourselves around you with prayer and support and love and nourishment and help you find some room to breathe…
because we love you all so very much!
peace to you guys
ang
Jane and Andy,
Our hearts go out to you both. The love you have for Ramona is so deep and pure. The same as God’s love for her. We are so sorry that she needs this next surgery. We are praying for her and for you guys. That is GREAT NEWS that she is off methadone and ativan! What a milestone. You guys are incredible parents, raising two precious gifts with your hearts wide open. We are praying and pulling for you guys.
J&G
That is a gorgeous girl in your photo Jane. And don’t tell me it’s just your photographer tricks again – the girl’s a BEAUT!
I take deep sighs of RELIEF to hear that she is off the drugs and night feed. That is huge! Look back in your posts; that was killing you only weeks ago and now look at how she’s taken a baby step away from that hurdle. Take from that experience that Time is not always bad. It’s how we use that time that can send us into a frenzy, a rut, a “what-if” jungle. I agree with the above posts – between now and the MRI, remember to breathe. Another thing that is out of your hands, another thing that needs prayer.
Keeping you guys in my prayers,
Molly
I’m praying
Mike and I just read this after getting off the phone with you.
Your Mother’s heart is huge and a joy to behold. We continue to pray and know that she is in God’s hands no matter what.
We Love You!
Being a world-class worrier myself, I’ve learned that worrying doesn’t get you anywhere. I know it’s not easy, but can you put all of your worrying on hold until you have more information? Try to enjoy each day and let tomorrow worry about itself. I know that’s such a cliche and I”m probably making my butt look big, but taking things one day at a time helps me when I’m worrying about something.
Today, Ramona looks healthy and beautiful and precious! Enjoy her right now. We’ll help you deal with tomorrow …um… tomorrow….
Thanks for the update. You guys are never far from our thoughts and prayers.
May I say Ms. Mae looks so much like her dad in this picture. We are so glad she is gaining weight and is off the meds finally. She’s making great strides. Enjoy and celebrate her progress and give yourself lots of grace.
Please let us know how the consultation goes Monday.
Both you and Andy are doing great keeping up with the demands of life with two small children.
Ramona just looks so healthy and oh so happy.
i’ve been reading your blog for a few months now but never commented. today, i felt compelled to leave you a message.
if ramona has your heart and spirit, i think she’ll be ok. =)
Little Miss Ramona Mae looks beatiful in the picture today, as usual. Dear Jane, I’m offering more prayer up for all of you and will continue to walk this journey with you.
Love, Val
Hi! Someone sent me a link to your site asking that we include little Ramona in our prayers. Please know that I am one more praying your family, most especially your beautiful daughter. I wish you peace and miracles for your little one. God bless you.
Sorry for the typo – we meant to say that we are so sorry that she MAY need spinal surgery, and are praying that she will not. Sending our prayers from the South Side. PS Ramona is SUCH a beautiful girl!
Jane,
I know the anxiety you feel. Just keep holding on the GOD, because he will not fail you. I have been praying that Mon’s brain and spine are normal.. that Ramona grow up and be healthy. God has not failed you yet. Don’t let the doctor’s words scare you… You will see more miracles.
Love
Aunt Ro
I don’t know how you’re holding together, Jane, with each new terrifying bit of information you receive. I cry and hurt with you, friend, and am in awe at how much you are able to feel. I imagine the Holy Spirit entwining you, holding you together, loving and aching for you.
Jane
I’m sorry there is another concern, another intervention. We just returned from vacation and I had hoped for simple happy news – not something else to add to your worries. When Wren was younger he had a “hairy patch” on his lower spine. It too can be a sign of spina bifidu occulta (the tethered spinal cord thing). What I learned was that it is actually very common and only causes complications in worst cases. In our case, the hairy bit reduced and our ped said it was not significant enough for further study. I cried for a night or two thinking “what else can happen to the poor little guy”.
By the way… could you ask the neuro and GI teams to collaborate? If the GI study could be done earlier the button surgery and the scan could be done under the same procedure. I totally get it if you have decided to put it off for other reasons but sometimes they can piggy-back to reduce the number of procedures requiring anaesthesia.
Shannon