She is 7!

I can't even believe Arwen is 7 this week! The Lord has brought Arwen so far over the years and we feel so blessed to be her parents. With all of the recent conflict of abortion over social media lately, I am beyond grateful for the gospel and foundation that Christ has given us. I was asked numerous times until late in my pregnancy to abort Arwen because of her Spina Bifida. I am not going to go on a political rant, but I pray that the Lord reveals Himself to those who believe killing an unborn baby in the womb is somehow acceptable and praised. Arwen had a rough start to the year last year with a lot of weakness, pain and struggle. We had numerous doctors appointments for many months, but by the summer the Lord graciously gave her body a little break. As most of you know Arwen was granted her dream from the Dream Factory of KC to go to Disney World to meet Elsa. We cannot even describe how wonderful of an experience that was for her and our whole family. It is something we will all never forget and I pray helps give Arwen joy as she will face many trials.



 

This year Arwen will be getting bladder and bowel surgeries to help her independence and health of her bladder. We are still praying where the Lord will lead us to have all of this done, so we appreciate your prayers with us on this big decision. A huge huge praise is that her Neurosurgery team has said she can go over a year till follow up apt and no MRI needed unless symptoms arise. And unfortunately that could happen at any given second when you have a shunt that could malfunction at any given time, an already tethered cord that could cause issues for surgery , and chair malformation that could cause compression issues at any given point. She has had to have a MRI 2x or more a year since birth so this is a HUGE improvement. Though it could change at any second, we are beyond grateful for this and will gladly accept that good news! This past 6 months has been so wonderful for Arwen's improvement in physical therapy as well. 6 months ago she couldn't even hop more than 5-9x on her strong side which is her left before the big weakness change last year and 2-3x since age 1 on her right side which has always been her weak side. After doing weekly pt conditioning, stretching, BFR cuff (blood flow restriction) therapy, and a lot of collagen for muscle recovery she has blown us out of the water. She hit about 60 hops on her left side (her silly bladder causes pain and spasms so she could probably do more if that didn't stop her) and last week her right side hit 35 hops. To say we were amazed is not enough. Unfortunately, insurance deductibles and miserable money is interfering with her being able to go as often this year, but we will continue to work hard at home as best as we can for now as the Lord allows.


 
 I still struggle with trying to explain Arwen's medical diagnosis as a whole to people who always just deem her as looking too 'normal' to have anything 'wrong' in their eyes. Those words are just a trigger word that make my blood boil. I know for the most part people mean no harm and probably think they are giving her a compliment when they say those things, but it is far from the truth. Arwen has been blessed to be able to walk, but no one sees the inner body struggles she faces daily with her brain, bowels, bladder, and back and most of the time I find myself trying to explain it all and then realize it's a losing battle. And that's okay. I know the ins and outs of Spina Bifida because I am her advocate and live with her daily, so I can't expect the average person to try to comprehend that even a small headache can lead to full on brain surgery or that her constant leg pain and weakness can lead to a back surgery, or that she will never have the ability to go to the bathroom on her own and will always have to wear a diaper or pad for continence. These are her 'normal' and she lives it out beautifully and with more dignity than I would if I were in her shoes. She is getting older which brings new fears and struggles of her awareness, but I pray that the Lord continues to lead her little heart closer to Himself for her joy and His glory no matter what challenges she faces.

I think the pregnancy was the hardest part emotionally because every day you are guessing and wondering what their life with Spina Bifida will be like. Will she walk? Will she need a trach? Will she be able to have any bladder or bowel function? Will she need a shunt? What if she hates me for her spina bifida? The list never ended. I then would read books on spina bifida and like a dummy googled it multiple times (ha! lesson learned). To this day I still have many "what if" questions since the nature of the spina bifida beast is always a guessing game, but my faith continues to be renewed and I am still learning to lean not on the strength of myself, but on the Lord who loves Arwen more than I could ever imagine.

As most of you know she has many good months and many bad. At any point in time things like her shunt could fail, her kidneys could grow weak from the ongoing high pressures of her bladder, her tethered cord and syrinx could cause her to become very weak which could affect her walking capabilities and need detethering surgery, and on and on. A headache is not always just a headache with a SB kiddo, flu like symptoms can throw a parent into a full blown "what if it is her shunt" panic attack, her being able to walk up hill without falling or tripping is like us climbing Mount Everest. As hard as all of it can be, it is our "normal" as a family and we embrace each battle and triumph together. We love to share what Arwen's life with Spina Bifida is like on a daily basis and help to 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 7 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.

 As most of you know she is able to walk unassisted but has a gait/crouch and rotation when she is not wearing her braces. We did have her wearing her braces 4-6hours a day to help straighten her gait but her Orthopedic team thinks they do not serve her leg issues well.She doesn’t need the braces to get around  but they help strengthen her muscles that don’t work properly and assist her to walk in alignment. She mainly wore 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. We hope to one day 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, 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 and hip,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 help from physical therapy. She may 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 definition in her hip flexors and calf muscles, but has done so well working around those issues in therapy.

Arwen has been having fun 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 the area. It is hard for us to make it on a routine schedule but she goes as often as time allows. 4 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. 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 has struggled with many 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 after getting her on a new program and working with essential oils and fermented food. 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. Like I mentioned, we hope to get her the surgeries for bowel and bladder independence sometime this year as the Lord leads us when and where. 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.

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 afew scares with the shunt starting to malfunction, but has corrected itself without any intervention. 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 we finally 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.) After a year or so of occupational therapy and being older, she is doing so much better 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.

We ask for prayer for us as we seek out doctors we feel the Lord leads us to for Arwen's continual care. We feel at a loss right now with a complicated history with some of the ones we have used, but know that the Lord has her in his ultimate care and will reveal to us the path that is best for her and brings Himself the most glory. We appreciate you all and your ongoing love and care for our family.


 If you feel led to donate to her medical expenses: http://tinktut-kids.blogspot.com/p/blog-page_17.html