Spina Bifida through the eyes of our beautiful little girl, Arwen

We love to share what Arwen's life with Spina Bifida is like on a daily basis and help spread awareness.To the naked eye it is hard to fully understand what she goes through on a daily basis ,So here is an updated version of her life right now.

                        

Spina Bifida through the eyes of our beautiful little girl, Arwen

Arwen Noel was diagnosed in utero at 18 weeks with myelomeningocele spina bifida L4/L5-S1. ("is the most severe and occurs when the spinalcord is exposed through the opening in the spine, resulting inpartial or complete paralysis of the parts of the body below the spinal opening. The paralysis may be so severe that the affectedindividual is unable to walk and may have urinary and bowel dysfunction")

It was a very overwhelming emotionally and physically for us when we first heard the doctors tell us. So many different medical words,diagnoses, and outcomes were thrown at us in those first few weeks and we just felt like crying every day. But with the help from The Lord  and many spina bifida (SB) families around the country, we were blessed with a sense of peace very quickly as we sought out many ways that could help give Arwen the best life possible no matter what SB threw our way. And we continue to seek God's direction each and everyday as Arwen faces many new battles due to her SB.

She is now a happy 4 year old who loves life and keeps a smile on her face even when her life goes through the trenches. Her fighting spirit and strength come only from our Savior, Jesus Christ who already paid the price for her on that cross so many years ago. We pray that Arwen clings to that hope through every trial, tear, joy,and miracle that she faces.

     Arwen's SB journey  in a nutshell for those of you who do not know:  I am Praising God over and over for how far He has brought her in the past few years  since last writing her spina bifida story.

     She is able to walk unassisted but has a gait/crouch and rotation when she is not wearing her braces. We have her wearing her braces 4-6hours a day. Though she doesn’t need them to get around they help strengthen her muscles that don’t work properly and assist her to walk in alignment. She phased out of her SMO's (akaSure Steps-allows children to gain stability, while still allowing normal movement and function)for ankle/foot protection and movinginto shoe inserts. Which haven't seemed to help her stability and food rotation the way we had hoped.

She also wears AFO carbon fiber dynamics that help her not crouch down while standing/walking and they help give her the spring in her step that she doesn't have naturally due to being born with her feetbending upward towards her ankle. Soon we hope to try a whole new set of bracing that will help protect her ankle and still help straighten her gait. 

We call her the hodge podge,lol…because she has sporadic feeling, sensation, and movement throughout her legs, ankles, and  feet. Until this past year she was unable to move both of her feet and toes (hard to explain lol)up and  down...but lately she has been able to move her left foot and big toe up and down pretty well. She can sometimes move her right one  alittle bit, but still struggles with that that side since it is a lot weaker. She still has a slight inward rotation from hip and tibia but we haven’t had to use her Theratogs to help with that very much because she has mostly been able to correct it on her own with helpfrom physical therapy. She will eventually need surgery to help correct the rotation and tightness but we are still seeing improvement from therapy and bracing. Arwen also doesn't have very much muscle definitionin in her hip flexors and calf muscles, but has done so well working around those issues in therapy.

This past year has been a fun year for Arwen as she has continues exploring new ways to help her do physical therapy. She has tried hippotherapy (physical therapy on a horse), pool physical therapy which has helped her strengthen her core muscles and work on going upand down stairs, and still has physical therapy out sourced at a pt facility in downtown kc. It is hard for us to make it on a routine schedule but she goes as often as time allows. 2 years ago she could barely take a few steps alone...now she is running around chasing her siblings, jumping,and proudly walks up and down the stairs while holding onto the rail. She may fall quite a few times in the process but she gets right up and tries again. I love her sassy and persistent spirit.

Arwen has a neurogenic bladder which means she will never have the capability to be able to empty on her own and in return has to be cathed 6x a day. She struggled again this last year with infections, ER visits, and changes in bladder regimen. But thankfully after quite a few trial and error processes we seem to have her infection free for the most part after getting her on a new program and adding supplements and essential oils to the mix.     Our new struggle is to try to get her to be on the road to being able to stay dry as she is becoming older and wanting to be like her friends. We have taken her to 2 new hospitals for her bladder concerns but can't seem to find a good solution for her but we are hopeful and will continue to seek the best care possible for her. There is eventually a surgery to help but once again we feel like she is too young to understand the long term effects of it and want to try every avenue first. She cannot control her bowels as well and will likely never be able to, and we are so so thankful for the program through Cinicinnati that has allowed her to stay clean 99% of the time between clean outs. She will eventually need a surgery to help her do this process on her own but we would like to wait a couple more years till she is older to understand all it entails.

 

   Arwen has a VP shunt for hydrocephalus (fluid on the brain) that was put in when she was 9 days old. We are very thankful that we’ve only had a few scares with the shunt starting to malfunction, but has corrected itself without any intervention. But the really hard part is that every flu like symptom or headache lead us to an ER visit to check for shunt failure. So we secretly pray that if it is the flu that another kids in the bunch will get it first to help us determine if shunt without an ER visit lol. You will have to ask her where her baby scar is (where the shunt empties into her abdomen)…she is pretty proud of it.

Arwen has always struggled with being able to drink well on her own so after many doctor visits and mommy fighting for a real answer wefinally got an evaluation apt with a wonderful occupational therapist who figured Arwen’s problems out in less than 5 minutes upon seeing her. I was not going to give into the NG tube or G tube until we figured out what was causing her to not drink and I am glad that Ididn’t listen to the doctors and stuck to my guns. Her occupational therapist from Children’s Mercy found that she has a reverse swallow/tongue thrust (“the tongue protrudes through the anteriorincisors during swallowing, speech, and while the tongue is at rest”)and a high palette. We are unsure if these are caused from her having Chiari Malformation II (which involves the extension of bothcerebellar and brainstem tissue into the foramen magnum. Also, the cerebellar vermis-the nerve tissue that connects the two halves ofthe cerebellum may be only partially complete or absent.) She seems to do well for a while after her OT therapy but soon regresses so weare still unsure the road that is best for her in this area. We are very thankful for her therapists who work so hard with her and who have helped us better understand how to assist her with her struggles.  She will need dental work to help with the palette later down the road and it seems that the electrode therapy and occupational therapy did help a lot with her reverse swallow. We have seen major improvements and hope she continues down the same path.

While reading our long term goals for Arwen from our previous story I just want to giggle, cry, and shout for joy because she has exceeded those expectations by leaps and bounds in the past few years. She is getting older and is very aware of her spina bifida making her different which has been a heart wrenching struggle to explain as she is still so small but We give God the glory as He continues to do a good work in her precious little life. She is so full of joy each day and we just love being her parents. We look forward to what God has in store for her in the years to come. She will have many good and bad days, but we will continue to point her to the cross through each trial and blessing she faces.

  

I know this an overload of information, and to the naked eye she seems perfectly “normal” to everyone else, and it seems like a lot for her to go through on a daily basis and trust me it is at times, but these things don't define who Arwen is as a person. They are just another part of her life that makes her the wonderful little girl that God created for His glory. There are so many different "medical"assumptions to why children are born with spina bifida, but ultimately God chose our precious girl to have spina bifida so that His glory can be made known. Her spina bifida is not a curse, but a blessing to show the world that God is still sovereign through a disability and His love is still perfect through the blood of Jesus Christ that was sacrificed for those who believe. She is made perfect through the cross.