Two Months and Still Fighting Strong

Good afternoon dear friends and welcome back to Ceci’s prayer page. Thank you for taking time out of your busy day to come check up on our girl and family.

Since Ceci had surgery on Tuesday, our kiddo has been taking it easy. She has about 12 staples in her abdomen, 6 staples in her back and several stitches in her back- from her initial reclosure surgery weeks ago, so she’s pretty sore and moving or attempting to sit up straight has been a little too much.

She is needing some oral Morphine to control the pain along with Tylenol and her Lidocaine patch. Today she is going to stay in bed and rest and she will most likely be doing the same tomorrow.

The good news is that her awful leg spasm pain is gone again and her back isn’t causing too much discomfort. Her abdomen seems to be the main complaint.

Pediatric surgery had to cut through her abdomen muscles so they warned us that it would be painful. Poor girl. We took the wide abdomen dressings off today and seen that it was a bigger incision than we all had thought. No wonder rolling on her side was painful 😦

Tuesday when they took her into surgery, they removed the external drain from her spine and placed an LP shunt to drain the fluid that continues to accumulate on her spine. (see photo for example)

So the shunt takes the fluid from her back and drains it into her peritoneal cavity and then her kidneys reabsorb the fluid and she will eventually urinate it out of the body.

We are hoping that this will finally take care of all the issues that our fighter has been dealing with these past few months with the unexplained fluid build up, but honestly it’s another wait and see.

Neurosurgery does not know if this will work. There’s several concerns with having 2 shunts draining at the same time in Ceci.

Ceci has Hydrocephulas (condition in which excess cerebrospinal fluid builds up within the ventricles of the brain and may increase pressure within the head) and Arnold Chiari Malformation Type 2 so she has had a VP or Ventriculo-Peritoneal Shunt since she was a month old to drain the excess CSF in her brain to keep her symptom free and stable.

Now she also has the LP shunt or Lumbo- Peritoneal Shunt as well. This is not normally done. We will have to see how her body responds.

So some of the concerns now- Will she over drain her ventricles with 2 devices removing fluid? Will there be too much fluid going into her peritoneal area causing distention and pain in her abdomen before it can pass through her body? Will it drain enough fluid off her back to keep the horrible pain away?

We just do not know and it’s frustrating but we are trying to stay positive.

Any good news is accepted and warmly welcomes right now and so far the gosh awful nerve leg pain is gone, so we’ll go with that πŸ™‚

πŸ™‚ Ceci has been keeping herself busy while she is on bed rest reading everyone’s sweet comments ❀ and watching one of her favorite people in the world Mrs. Ellen DeGeneres. LOL I just love the way Ellen can bring the biggest smile to her face or the sweetest giggle from her lips right through the pain. Thank you YouTube for providing this girl hours upon hours of Ellen Clips.

Ceci just finished working with her hospital school teacher and is not working with her amazing Counselor, so I am going to sign off for now so I can grab a cup of coffee and return some of the beautiful rocks Ceci painted to the rooftop garden.

We are really enjoying this new hobby that we found. There are so many beautiful big flat rocks to decorate and painting inspirational quotes or pictures on them has not only been fun but uplifting for us both πŸ™‚ Super fun!

I think with all the craziness going on we forget to sometimes stop and have a little fun. We have already talked about it and we can’t wait to get back home so we can share our new found hobby with our boys.

Alright guys, really signing off this time πŸ™‚

Be back soon.

Lots of Love, Hugs and Appreciation,

Alexis (mom), Cecilia Marie and Our Special Family

~Spina Bifida Fighters and Survivor~

~ To Support Caring For Courageous Cecilia Marie Please Click on the Link Below~