We feel so blessed for all the amazing medical professionals we have in Hattie’s corner. James and I had a phone call with her genetics counselor from Baltimore to obtain this information last Friday. It was humorous only because I totally blew the timing and forgot Baltimore was on eastern time – so instead of being at home with our notepad ready….we were getting family lunch at sonic with all 3 kids awake and loud in the back ground. Our genetic testing we most recently had performed after visiting Kennedy Krieger showed a diagnosis for Hattie.

Hattie was found to have a de novo variant in a gene called GNB1.  This is a rare, recently discovered disorder.  Frequent characteristics include hypotonia, global developmental delay, intellectual disability, and epilepsy.  There is no cure or targeted treatment for GNB1-related disorder at this time.

 

GNB-1 Syndrome was recently discovered in 2016 and so limited research is found about it.  Hattie’s hypotonia since birth, global developmental delay (motor, speech and cognitive), Slow Growth and eye problems all fit into this diagnosis.  GNB-1 would be a diagnosis under the CENTRAL (brain/genes) pathway which is different from what we originally were thinking.  Now that Hattie is 20months we are seeing that she is falling behind in all areas not just with her motor development.  This syndrome is highly linked to epilepsy and seizure disorders so it means that we will need to monitor her closely for any development in that area.

We traveled to Birmingham on Easter for Hattie to have an MRI under anesthesia at Childrens and then have her 6month followup with her Neurologist.  The MRI of the brain showed no abnormality except for slight enlargement of 1 ventricle (which doesn’t really mean much).  Her MRI of her spine showed something called a syrinx (fluid filled cyst) within her spinal cord which is small but should not be contributing to her symptoms. More than likely is linked with the genetic disorder and we will just have to continue monitoring it as she grows.

The visit with her Neurologist was pretty uneventful which was a pleasant change from our normal news.

I think back to the conversation on Friday and the question “I’ve just downloaded you all with lots of information, do you have any questions?” and laugh a bit.  From our hour long conversation we basically know that we will know more in 5-10 years….

• Hattie may never develop normal speech but might could use technology to help her communicate with us.
• Hattie may never walk – the 2 children with her variant are older than her and still in wheelchairs
• Hattie will always have Hypotonia – she may get stronger but there is no way to know what that looks like
• Hattie may develop seizures
• Hattie needs yearly Blood drawn (aka CBC) because there was one child that developed Leukemia due to the Gprotein issue
• Hattie will always have Global developmental delay

Bottomline – We have a beautiful happy special needs child that we will push and fight for, pray for and love, Continue to take to her therapists as much as we can. Learn more about and Try and discover what she needs as we go.

We have cried and laughed, are grieving and praying – but at the end of the day our Hands are going up.  We praise the Lord for the gifts that all our children are! We know without a doubt there is always something working for the good and that all we must do is put one foot in front of the other. So many families don’t have an answer and here we are after less than 2 years with an answer!

We will continue to keep you posted on this crazy Jetton life – P.S. I’m super pregnant and at home from work due to heart palpitations. I have a ginormous baby boy in my belly and I can’t kick him out for at least another month – preferably 6 weeks.  Pray for us – especially James, he soooo needs it!

 

 

I haven’t blogged in a few weeks because to be honest it has been crazier than normal at the Jetton Circus. James and I embarked on a very long awaited trip to Kennedy Krieger Institute at John Hopkins in Baltimore, MD for Hattie to see a specialist in congenital myopathies in mid January. It was freezing – we left in an florida ice storm -per the usual with James and I traveling.  We were very thankful to be able to leave the big girls with Yaya and Bobo (my parents) at the farm for a few days and have some one on one time with Hattie K.  She had her first flight(s) ever – which you would have thought she was a seasoned traveler.  Bumpo seat + veggie straws + lots of attention = winner winner chicken dinner.

James and Kaet got to enjoy some crab cakes and crab legs – and also life with one child.  We seriously laughed a lot at how difficult we used to think it was to have just one baby and just rested in the joy of having 3 + 1 on the way and what an amazing joy God has brought into our lives.

Our hopes for the trip were to confirm that Hattie did have a myopathy and that we are doing all we can for this but much to our surprise (shocker….we expect roller coasters in this journey) this was not the case.  We met with an amazing female physician and spent at least 4 hours in the clinic talking with her, a geneticist and physical therapist.  The specialist (who sees myopathies all day every day – as well as researches them) feels that now that Hattie is starting to get older she is actually beginning to show some global delay (areas other than just motor) and that her muscles and gene mutation (RYR1) aren’t the sole cause of why Hattie is Hattie.  Interesting fact – a very small amount (like <2%) of the population have the RYR1 gene mutation and have no muscle disability whatsoever. We have never gone down any other pathway but the peripheral (muscle) so now we will journey down the central pathway for possible causes including an MRI (brain and spine) and full genetic array of the WHOLE family. She did encourage us in all we are doing for Hattie and the lengths we are reaching to get her the help she needs.

This news was slightly discouraging yet encouraging at the same time.  Something might be there that could improve slowly over time (still not resolve but improve) but it means we start back at Hattie Square 1.   No new answers and actually less answers that we had before.  We continue to chose joy inspite of fears or frustrations because of who Hattie is and continues to be.  She is a light to all who contact her and is a central part of Team Jetton in this crazy journey.  Soooo whats next – we wait and see – We may get results or we may not. We may open rabbit holes that have no end – but we are prepared.

 

Hattie is continuing to meet small inch stones – we see very sparatic weight bearing through her legs and she HATES tummy time so is getting much better at rolling from front to back.  She has started to be able to feed herself some foods including veggie straws, granola bars, green beans/strawberries (new this week) – getting closer to using her sippy cup with assistance and is definitely reaching more.  No new words but we love to smack our lips and make our teeth grind (yikes!).  She laughs constantly at her older sister and reaches for them now – Oh and yes she has started to shake her head no….which is horribly fantastic for mom and dad!  Thank you for all the continued prayers – Update on life will be more frequent I promise!

-Kaet

I’ll be honest….somedays just suck no matter what you do.  You get in a rut and just literally can’t seem to be able to pull yourself up – and the more I walk through this life, I realize that’s ok.  I found myself in the past being hard on myself for feeling hard on myself – seriously a twisted circle.  There are days when I don’t put on real clothes and my house is a mess, and I’m not betty homemaker AND my mommying game is DEFINTELY not on point but God still thinks I’m pretty amazing…and I’m settled and hopeful in that.

Hope 1. A feeling of expectation and desire for a certain thing to happen.  2. A feeling of trust.

There are days when hope is all that carries me – I’m literally on my like 18^th cup of coffee after a nightshift with no sleep and I look at my girls and think “my hope is they love Jesus…and aren’t crappy people even though I’m struggling today” (I know that’s aweinspiring) but then they smile or hug me or share (huge for 4 and 2) or encourage Hattie and I’m suddenly lifted up. There is so much that can bring hope but somedays as quickly as I cling to that hope I can allow darkness in the form of Grief to come in.

Grief 1.deep sorrow, especially that caused by someone’s death.  2. Trouble or annoyance

When I was first told that Hattie wasn’t “normal” – I had to actually call in to work (which my husband will attest to NEVER happens).  I was a hot mess – crying nonstop when I was alone or just with Hattie (I didn’t want my older girls to be upset).  I felt this overwhelming sadness – but WHY? My child was ALIVE and HEALTHY.  I really wrestled with this thought.  I was speaking (well more like sobbing) to my dad one day and he said something that stuck “Kaet – you are just grieving the loss of normality. It’s ok, it’s part of the process.”  At this point we really had a LOT of scary things pending – like tests that could ultimately mean she would lose her life before the age of 1 and it was terrifying.  But how could I have grieve, no one had died….no one had hurt our family…there was nothing tragic… How could I feel so much sadness with a beautiful family, living in a too nice home with an amazing church, job and family.  I avoided social media because every time I would get on and see those “Look at my baby, he/she is so smart…(insert some milestone here)” it literally stung me to my core.  I avoided seeing babies around the same age at work because it too would make it worse (which was hard because I tend to see the kids because I have so many lol).  I would cry out to God asking those WHY questions and felt like silence was His only answer. My hope was drowning….my heart felt far away and it was angry – whew was it angry and I yelled. I yelled a couple times directly at God (sorry about that) – and then something shifted.  Slowly and steadily the more I yelled, sobbed, got mad – I began to release and would shift towards Hope.  Not necessarily hope that Hattie would be miraculously healed because we do live in a fallen world and I know that not all things can be healed but that my family could rise up for her.  There was a moment one day in the car when I was frustrated, angry and sad and I began to cry.  It was a hopeless moment and then I realized it was Wednesday and I wasn’t alone in my van.  I not only had Hattie but sweet Isla Kate was in the car too.  She quickly asked “Momma you ok? Momma why you crying?”  I sniffled and tried to explain to my 2yr old that I was sad a little about Hattie.  Without a moment pause she said “Momma, Hattie going be ok – I’m gonna take care of her.”  Bam! HOPE – what a powerful thing.  Trusting that no matter what – there is a next step, one foot in front of the other.

Grief is a part of the process.  It is a part of healing, it is a part of moving forward – it is a seed that helps to plant new hope.  I do believe without a doubt that God will send the rain to water this seed, even when it is from the most unexpected places – like a tiny 2yr old in the backseat.  Sadness or Grief is a hard thing to admit that we have – for whatever reasons the idea that someone can be sad is like taboo in this culture but then again the worldly culture hates truth, love and real feelings.  Following Jesus is about living in the world but not of the world.  Being part of the culture to inspire the culture by choosing love. It will not spare us from feeling sadness but it keeps us LOVING endlessly. Having TRUE feelings and being a REAL person – that means that sometimes sadness/grief is a part of our story. Embrace your grief and search for Hope.  Ask for help if you can’t take it on all by yourself – those people are often the rainmakers that will help bring forth those seeds of Hope. No matter how alone you might feel – You aren’t.

There are still days that grief will knock on the door – life events for Hattie or the girls are big triggers for me but I’m better.  I don’t sob but I do stop and breathe.  I know rain is still on the horizon but I’m ready for it and through all things Our Hands will Go Up.

And speaking of Joy – the lord continually surprises ALL of us – Baby BOY Jetton Due May 2018

 

-Kaetlin

A few weeks ago my oldest daughter, Laken, spoke some incredible wisdom into my life that I am still thinking through.  We have been talking about life, death, and heaven a lot, and Laken has decided that she really doesn’t want to go to Heaven, and because I’m a great dad…I decided I needed to convince her about how wonderful heaven is and that she really does want to go there.

The convincing and conversation ended rather quickly, as soon as I started by saying, “Think of your most favorite, greatest place on earth and imagine being there forever!”

So as we are making our 45 minute commute to school/work (a time that at times I think she hates), I ask her, “so, where is your favorite place? her reply, “right here.” #mindblown

I realized that this little 4 year old could not imagine a better place on earth than being exactly where she is right now, and so the idea of leaving this place to go to a heaven was downright scary to her.  This would be the perfect example of being content, and it was in this moment that the words “let thy will be done on earth, as it is in Heaven” became more real than ever.  I realized that Jesus didn’t just come and die on the Cross so that we could spend eternity in heaven, but He came to also give us a full life!  And that real contentment can only be reached if we are striving to have heaven on earth; otherwise we are constantly waiting for that better place (Heaven).

In an interview with Josh Ross and Jonathan Storment, authors of Bringing Heaven to Earth, they said it like this:

“One idea we hope to convey about heaven is that we believe that the primary goal of the Bible, specifically the New Testament, is not that we get to go to heaven when we die, but it’s that we get to thrive in a living covenant with Jesus that transcends death. Therefore, the gospel is bigger than trusting in Jesus, so you can get your sins forgiven, so that you can go to heaven after you die. The gospel is trusting in Jesus, entering into an eternal covenant which begins now, and then living in the fullness of God in order to change the world. The call of Christians is not to cross your fingers and hang on tight until the end, but to roll up your sleeves, partner with God, and join in the adventure.”

At the end of the day, I know bringing heaven to earth is a great idea, but it can be overshadowed with all of the “crap” that is accompanied with this world.  However, it’s the simple truth from a 4 year old that has not yet been told how hard this world is yet, that reminds me that we can still have heaven on earth and the only thing keeping us from having that is our own heart, mind, and relationship with Jesus.  It’s for this reason and so many others that no matter how dark the days get, our hands will still go up.

-James

Photocred: https://www.madicphotography.com/

 

Hello All – Its funny that I created this website 3 months ago and have drug my feet in posting anything.  If any of you know me then you actually know I tend to be an introvert (yeah I know that is crazy to think of) and tend to keep my struggles silent.  Like today for example – I may not leave the house all day….and if I do I’ll be in active wear but have totally not been active at all.  The Lord has definitely challenged me in this by giving our family one of the most wonderful challenges yet – a child with special needs.

I started this website as somewhat of an education or interest tool for those who want to know more about us and also what exactly Hattie is working through.  We currently still do not have a diagnosis and that is ok but we have a gene mutation that points us to one of the congenital myopathies.  Hattie began as just having hypotonia (there’s more info about that) but unlike some children who have a “benign” type of Hypotonia that resolves as they age or causes slight limitations – Hattie has progressed extremely slowly since 4 months of age.  Everyone says “dont say what she can’t do…say what she can!”   Well not to be the pessimistic person in the room but Hatties DO list is a short one but we are praising every little inch she makes.  With Hatties condition there are more unknowns than knowns and we get  ALOT of questions about that…But that’s ok because We love to share her story!  She can currently sit assisted in a Bumpo and has started on more solid foods.  She laughs and smiles (mostly at her dad and sisters).  She gets Physical Therapy 3x a week, Occupational Therapy 2x a week and speech therapy 1x a week. We recently had a followup appointment with Hatties Neurologist at Childrens in Birmingham and are excited to get reffered to the MDA clinic (Muscular Dystrophy Clinic of Alabama – no Hattie doesn’t have Muscular Dystrophy but they work with a wide variety of Neuromuscular disorders) and also are making a BIG Trip in January to Baltimore to the Kennedy Krieger Institute at John Hopkins to see another specialist in the Muscle Clinic.

Isla Kate is in school and loves her teachers….lol She’s an introvert after her mommas own heart but LOVES arts/crafts.  She also loves to help me bake in the kitchen and loves taking care of Hattie K.  She has started “her little horse” as a special needs sibling at Grace Rides, Inc.  www.gracerides.net

Laken Elaine has successfully started 3VPK at Crosspoint Academy this fall (cool because daddy works across the street) and is thriving.  She loves her classmates and teachers. She also does gymnastics, ballet, basketball….can you tell she is an active child.  She also rides horses and LOVES spending time up at the farm on her own John Deere.

 

This website is for friends, family, strangers who all want to know a little more about our lives and read a hopefully funny/encouraging blog about living life in the fast lane with the Jetton Crew. I promise not all my posts will be updates on our life…but then again it might.  My hopes is that I can use this as an outlet to get some of my struggles, strengths, joys and curiosities into the open air and out of my mind…so maybe I can sleep…BUT who really sleeps with 3 children 4 and under who are all strong willed, independent and VERY VERY talkative

 

 

James will be joining in on posts as well – because we are Team Jetton and Through ALL things OUR hands go up to the Heavens. Can’t wait to keep you posted. Blessings and Peace.