What’s a SLOB anyway?

Shit. shit. shit. shit. shit.

I couldn’t change that one word that was looping around in my mind. Tears streamed down my face as I pushed a happy and oblivious Mary Elizabeth out of the building in her wheelchair. She giggled and squealed at the birds chirping by our car as I loaded her into her car seat. Seth texted me again. “How’d it go?”
I couldn’t call him yet. I tried to wipe my eyes and blow my nose so I could drive. I just wanted to go.
I noticed ME pulling her right leg up and avoiding bearing weight on it a few weeks ago. Her OT also noticed. She asked me when I noticed that her left leg was longer than her right leg. Yesterday. And at that moment I knew in my gut it was bad.
Two weeks later my fears were confirmed in that doctor’s office. Her right hip is partially sublexed (pulled out of socket). It needs surgery. The surgery will be invasive and long and extremely painful, the orthopaedist says. It will require a body brace for 3 months after. It is better than the other surgery, which will be necessary if she actually dislocates her hip. Shit. I start crying quietly in the doctor’s office. He starts backing away from me slowly. Asks his nurse to get me a tissue. He leaves the room quickly, and the nurse gives me an awkward hug. Crap. I try my best to not do this….I like to remain in control and one step ahead of the doctors. I have never heard of this SLOB surgery. I have no idea what he is talking about. I wish Seth were here. He would ask the right questions. I am still stuck on invasive and very painful.
My mind dares to venture back to when ME was little and had her gtube surgery. It was one of the worst 48 hours in my life. ME had so much trouble with the pain. She howled like a wild animal…then moaned like an injured cat. Then just made this horrible humming noise that began in her gut and was the saddest sound….over and over and over. I cannot do that again. She cannot do that again. And that was just an easy procedure – most kids are in and out and feeling like new after a few days. It took my baby a month to not whimper when we touched her. This is a much bigger surgery. It will require a minimum of 4 days inpatient afterwards. I try not to think about it.
I feel like I have been hit by a truck. It literally came out of nowhere. Why didn’t I see it?
This ruins all our plans, I think. What is a SLOB anyway?

To be continued…

Ok – I’m back and feeling much more positive about this surgery for ME. A SLOB (or Summit Shelf) is a hip surgery designed to prevent further subluxation of the hips. Imagine the femur and hip as a ball in a baseball glove. ME’s femur (the ball) is pulling out of the glove (hip socket) towards the fingers part of the mitt. This procedure lengthens the fingers of the glove so that the ball cannot continue to slide out. This website does an in depth explanation of this surgery and how it came to be (as a preventative procedure…with the hopes of avoiding the scarier hip surgery called a VRO).
http://www.pediatric-orthopedics.com/Treatments/Hips_n_Chairs/Innominate/SLOB/slob.html

ME’s surgery is scheduled for April 20th – 2 weeks from now. I am busy getting prepared…ordering the big brace she will wear for 3 months after, talking to the PICU nurse at UTMB in Galveston (where her doc, Dr. Yngve, will be performing the 6 hour procedure) about their protocol, preparing Ben emotionally for this (he is very worried and anxious), and basically trying to center myself…take deep breaths and relax in the peace of knowing God is good.  ME will be in the PICU for 2 days after her surgery then will be inpatient on a regular floor for another 2-3 days.  She will be in a brace that will prevent her from moving her hips and legs (an immobilizer) for 3 months after.  She will have 4 inch scars on both hips.
After the initial shock of the news, I did experience a certainty and sense of peace about what is to come. I am thankful for this blessing while I struggle with my emotions of anxiety and fear and failure (which I know logically is silly, but I can’t help but feel like I didn’t “save” ME from this…like I should’ve prevented this from happening somehow. I know it’s not true, but I still have that feeling every now and then). For the longest time I struggled with the fear of ME getting sick and not being strong enough to fight it. I am over that. I know my girl is strong and healthy and will make it through this. I am afraid of the pain for her…of her retreating back into her own world b/c of the trauma and pain of this surgery. Of having to watch her cry and suffer and not be able to do anything about it. It is a common fear for all moms, and I am no exception. But as One of ME’s current therapists told me yesterday, “You’ll be fine. You can do this. Period.” She said it with such certainty that I think I may believe her. (I love how God puts those people right where I need them to say exactly what I need to hear)
So I am asking all of ME’s team – all of our wonderful friends and family and people we love to pray for Mary Elizabeth and for our family. Please pray for ME to stay healthy and to stay strong. Pray for her to make it through the surgery without any complications. Pray for her pain to be managed appropriately and effectively…for her spirit to remain strong and intact despite the pain and long recovery (my sister said that nothing can break my girl in three days…which is supposedly the hardest part of the procedure…pray that she is right!).
Please pray for our family – for Seth and Ben and I to remain positive and strong for ME. Pray for our fears and worries and anxieties to be given to God…for that sense of peace and calm that only comes from Him to be very present throughout this challenge.
Pray for ME’s Doctor, Dr. Yngve, and his surgical nurses and the nurses and staff at UTMB – for them to be at their very best when dealing with ME and for them to be competent and compassionate with Mary Elizabeth’s care.

Thanks y’all. We love you.

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Hard Decisions

The time has come to make some hard decisions about Mary Elizabeth. Her Doctors, therapists, and pretty much everyone has been telling us from early on that our baby girl will need surgery. Seth and I would politely nod and listen, then quickly write them off. Never – we would say. We will never put our girl through those invasive and painful surgeries. And We have escaped those surgeries so far…and I guess technically we could continue to “just say no”. ME’s hips and spine look good – she is in “good shape” considering. But in reality, the time has come. Mary Elizabeth’s poor legs need some help. She is so limited because of her spasticity…and the harder she tries to do something, the worse it gets.
As in mentioned in my last post, SPML surgery is something Seth and I have talked about for a long time now. It is a much less invasive surgery than the typical heel cord or tendon release surgery, and the results are a thousands times better. I have honestly not heard one bad thing about the particular type of surgery we want to do with Dr. Yngve, at UTMB in Galveston (he is one of the 2 docs in the US that currently do the procedure). The surgery will hopefully greatly reduce ME’s spasticity and scissoring in her legs. It is a day surgery, so we could drive there for the procedure and be home in our own beds that same night.

So what has been holding us back, then? My usual – fear. Fear of anesthesia, fear of Mary Elizabeth not waking up or waking up worse than before…ugly mean black suffocating fear. We have fought hard for every millimeter of progress with ME, and I don’t think I could handle any major setbacks. I have battled this irrational fear since Mary Elizabeth got sick with bronchiolitis when she was just 1. She was miserable, in pain, having up to 40 seizures a day and I couldn’t do a thing to help. I would just sit and rock her while she moaned and wheezed. I would watch her like a hawk – was that startle a seizure or not? What about that movement? Or that?
I went into survival mode. I couldn’t eat – even just water would make me nauseous. I felt out of control and crazy. It was the scariest thing to just watch your baby suffer (when she had already suffered so much in her young life). Those were the darkest days of my life. I was already drowning in grief over the loss of our “normal” baby girl – ridden with guilt that somehow it was my fault b/c I failed to protect her while she was in my belly. I learned to worry and let anxiety and fear into my life. It dominated my life for a long time – I was afraid to leave the house for fear Mary Elizabeth would get sick again. I was afraid to let my friends’ and sister’s snotty kids over for the same reason. I was a mess. God bless my poor friends at that time who loved me through and in spite of my mess. Slowly -through prayer, time, and personal resolve I have been winning the battle. I have let my guard down, and I am more relaxed. I picture Mary Elizabeth as a much stronger girl now, and I relax more. I am almost able to blend in to a stranger as a normal mom, a not so crazy mom (except my friends know the truth)…
But ever so often this fear creeps back; threatening to take over again. I am in a battle. I know I must denounce that fear, because I know it is not True…and not from God. And I know this surgery is a good thing for Mary Elizabeth – the right thing. I just have to trust that God will protect my baby girl and bring her through safely with her health and strength intact. I have to believe and remain strong in my faith. The Lord is kind and merciful.

Mary Elizabeth’s surgery is scheduled for April 3rd…just a few weeks away.
Please join us in praying for a safe, successful surgery for Mary Elizabeth. Pray that Mary Elizabeth can stay healthy and strong so that she can have the surgery. Pray for me – that I can stay positive and focused on the goal…helping Mary Elizabeth. Finally, pray for a good result (less spasticity in Mary Elizabeth’s legs) and for Mary Elizabeth to have some relief from her muscles contracting all the time.

Heavenly Father,
Thank you for blessing our family with Mary Elizabeth, our sweet baby girl. Thank you for this opportunity to help her – we know You have led us here. Thank you for your constant presence; reassuring us that You are here and in control. Thank you for this journey.
Please rain down Your healing mercy on Mary Elizabeth. Help to keep her healthy and strong. Be with Dr. Yngve and his staff – guide their hands and minds as they work on our baby girl. Protect Mary Elizabeth during the operation and help her to wake up easily from the anesthesia. Surround our girl with your love and warmth, Lord…have Your angels stand guard. Help me to remain strong and to not allow fear to creep in. Help Mary Elizabeth to recover quickly and to not feel scared or alone.

In Your Holy Name, Lord, we have dedicated this child. We will serve You and praise You with all of our might. All glory is Yours. Amen.

Honest thoughts from Mary Elizabeth’s Mom – after an MNRI Conference

We recently completed an 8 day MNRI family conference with Mary Elizabeth, and it was heavenly. For starters we were in sunny California while it was dreary, wet and cold at home. At the conferences, the therapists are usually top-notch…and I can always tell by the way they touch and handle Mary Elizabeth. Our therapists this year were mostly new to us, but very good. We had two Polish therapists who I fell in love with – they were silly, aggressive in their work and just plain nice to be around. Our neurostructural therapist reminded me a lot of Scooter (one of our favorite people) – very thoughtful and diligent in his work. He moved at a slower pace than I am used to, and it reminded me to SLOW DOWN when I work on Mary Elizabeth at home. Our facial person was really, really good – and I felt an instant bond with her (I hope she felt it too)…and it was nice to have been around Dr. M enough now to not be flustered or intimidated by her strong presence. I felt at ease with her, and it allowed me to have some real good (but tough) conversations with her about Mary Elizabeth’s future.
We talked about her improvements – 4X better (in her reflexes, which reflects the health and function of her central nervous system) than when we first saw her a little over a year ago and 2x better than when we saw her in Orlando 6 months ago. ME’s tremendous emotional maturity just over the past 6 months! She was not impressed with Mary Elizabeth’s vision, even though I think it has improved dramatically since we started…but Mary Elizabeth was not interested in looking at the orange she was using for tracking. Oh well.
We talked about what should be the priority of our home program (unanimously, neurostructural), and what we could expect of Mary Elizabeth’s progress in the future. She reported that Mary Elizabeth is improving just a bit better than the average kid who does MNRI…so her progress should stay steady. She did not think Mary Elizabeth was close to any major physical milestones like rolling or sitting yet (broke my heart), but she did think Mary Elizabeth would be a “talking girl” in the near future! She (of course) had very detailed explanations with numbers and big words and corresponding parts of the brain to explain all of her opinions…which I love. So, it was nice to have a moment to talk with her about Mary Elizabeth.
Finally we talked about a surgery that we have been praying about and researching for a while now called an SPML. It is the least invasive surgery we can do for Mary Elizabeth that will help with the spasticity and crossing of her legs. We have battled and battled and battled that spasticity and we are having trouble making headway. We have definitely been successful in preventing subluxation of her hips and major deformities and contractures of her legs and ankles…but we are not able to reverse the crossing or stop the spasticity so far. This spasticity and crossing (scissoring) will prevent Mary Elizabeth from walking, plain and simple. It is already preventing her from a lot of things, like rolling over and sitting up. We have to figure out how to break that pattern. We are hoping this surgery is it. I met a few moms who have done it more than once with their kids and say it was the turning point (in a good way) in their kids’ mobility. That they would do it a thousands times again. Wished they would have done it sooner, and so on. More about that later.

So now that we have been home for a week…what now? I always feel very confident when we are immersed in therapy that we can carry it on at home. Then we get home. And Benjamin needs attention…and laundry needs washing, drying and folding…and life takes over. I feel overwhelmed about the amount of work required to “carry it on”. I feel guilty when I skip an afternoon of reflexes to bring Ben to a play date, or have lunch with a friend. The enormous responsibility hangs over my head every day. And then somehow we find a rhythm, and we get into a good weekly routine. I am hoping to find that rhythm this time quickly.
And then there’s the whole “other people’s expectations” to deal with (forget mine and Seth’s – I have learned to simply not have specific expectations with my wildcard child). But others always do. Even those who know how this goes, always do. It starts with a simple, well-intended question, “So how is Mary Elizabeth doing?” Or “Have you seen any new changes since you have been home?” I always feel like my answer is insufficient. Like they are expecting more. I can’t explain that Mary Elizabeth progresses differently than typical kiddos…that her “milestones” are things they take for granted…or never even realized was a skill. I answer truthfully, “She is doing well. She is stronger in her core and less spastic in her legs. Her legs aren’t crossing quite so much or so high. She is more vocal, etc…” then I feel that uncomfortable pause b/c they are waiting, wanting more. And I can’t give it to them. Goodness, how I wish I could…b/c then it would mean ME has achieved an actual milestone for a neuro-typical kiddo! So I smile and act like it is ok…that we are ok. And we are, mostly. But facing reality in this situation is always tough for me (some days harder than others). ME has a severe brain injury that affects every aspect of her development. She will have to work hard for every small inch forward. And she will do it with a smile on her face, and Taylor Swift playing in the background. Because she has a tough and beautiful spirit. And we will dance and sing and rejoice in the baby steps forward, like sitting up taller and holding her head higher…and making a new sound and relaxing her hands.
And Seth and I will continue to push her and research things that may help her and bring her to therapy conferences…because we both believe that ME will walk, talk, sing and dance one day. And every inch of progress made brings us closer to those goals.

Thanks to the MNRI therapists and other families for the love and support – we had a great time and benefitted greatly from those intense 8 days. Thanks to our friends and family who loved us, supported us and prayed for us and this conference. We are so humbled by your love. Now off to work!

What exactly is Cerebral Palsy?

Today is National Cerebral Palsy Day, and CP is exactly what our sweet Mary Elizabeth has. image

What is it?
Cerebral Palsy is a very wide description used to describe someone who has a brain injury (usually that injury occurs in utero or around the time of birth). CP can “look” very different, from one person to the next. The brain injury can be severe and global (affecting the entire brain) like Mary Elizabeth, or it can be mild and only affect a small part of someone’s brain. So some people with CP can walk, talk, play like most neuro-typical kids; and some have major delays and struggle to breathe. It all depends on that person’s particular brain injury.
Often kids with CP will have other challenges similar to ME’s, such as a seizure disorder and GI problems. Some have trouble swallowing (dsyphagia) and require a G-tube (gastrostomy tube) for nutritional needs. Some have AFO’s (ankle-foot orthotics) or braces to help with their range of motion and gait. And the list goes on and on…
CP is a static diagnosis, meaning that Mary Elizabeth’s brain injury will not get worse (thank God). It may manifest her symptoms differently as her brain grows and scar tissue forms, but it won’t get worse.

What can we do about it?
CP is not curable. There is nothing that money and technology can do to make it go away. I believe firmly that only God can “heal” Mary Elizabeth – and He will one day in HIS time. And I will weep with joy.
In the meantime, we can do all sorts of things (that God has provided) to stimulate Mary Elizabeth’s brain.
There are a few wonderful and promising treatments and teams of specialists who can help people with CP gain ground in their development and utilize the healthy parts of their brains to become functional in all aspects of life. We actively seek those things out…I am always researching new “stuff” for Mary Elizabeth. I have a great group of smart, in-the-know CP Moms who also are constantly researching. We usually find the same stuff – stem cells, hyperbaric oxygen, ABM, MNRI, TheraTogs, blended diet, cranial sacral therapy, etc…And sometimes they have access to other things we haven’t tried yet b/c of a number of reasons: logistics (therapy is only in Sweden), money (always, always money), too invasive (we promised ourselves when Mary Elizabeth was a baby that we would not risk her health or hurt her for any experimental or traditional treatments)…we have taken the alternative and traditional routes – a good mix of both types of treatments and therapies.
There are things on my “list” for Mary Elizabeth that I want to try: Conductive Education, Mollii Suit, giger machine, neurobiofeedback, therasuit intensive therapy, and the list goes on. There are things I want to do again and again (if only that money tree I planted would start producing 🙂 – HBOT, stem cells, 2 MNRI conferences a year…

Summary:
Bottom lines is – CP is not a diagnosis to pity. These people are ok. They are not going to die and most are “healthy”. People with CP are usually very smart, but limited in their physical abilities. They know and want to do things; they just can’t get their body to cooperate. So they adapt and find other ways…they sharpen the skills they have and they live life. They are tough, strong, beautiful people who are capable of being good daughters, sisters, friends, and citizens. Please take a moment to go to this website and learn a bit more about Cerebral Palsy today.

http://cerebralpalsy.org/about-cerebral-palsy/definition/

And please comment with your thoughts, questions, treatment suggestions…I love to hear from you and to know that this blog is not just for me 🙂

Meet the Pantermollers

There is a beautiful family in Maine that we love.

Meet the Pantermollers:
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Matt
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Caitlyn
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Grayson
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Caden
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Baby Carter

Even though we have never met and we are miles and miles apart, this family holds a special place in our hearts. We met Matt and The Pantermollers through an incredible organization called I Run4 Michael. I Run4 pairs special needs kiddos (buddies) with runners/athletes. The buddies serve as an inspiration to the runners; and the runners dedicate their miles/workouts to their buddies…and send them pics, videos, cards, etc….
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Less than 6 months ago Mary Elizabeth was paired with Matt, and a beautiful relationship began. Matt is an extreme athlete – the kind who likes to crawl in mud, jump over fire and climb mountains with bags of sand on his back. He is tough. But his touching letters and posts to Mary Elizabeth reveal such a kind, sweet soul. He is a great dad, and you can tell from his posts that he is a kid at heart. He tells Mary Elizabeth that when he is having a tough time continuing, he thinks if her and “pushes ” through. She loves to see his pics, and smiles when I say Mr. Matt ‘s name.
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I Run4 is full of families that support and love each other from a distance (although some actually get the opportunity to meet) – they cheer, laugh, pray, run and cry together. The group is full of beautiful people who have a heart for kids like my sweet baby girl.
I didn’t “get it” when I was initially approached by a few friends (whose kids were already buddies) – I thought it was superficial and cliche…what could either party actually gain from joining the group? But as I really dug deep and read the posts of runners and buddies it made sense. This is real life. The runners have a strong, motivating person (who they grow to love) depending on them to run. When they feel tired or weak, they can think about their buddy who struggles for every inch – and it puts the pain/fatigue in perspective. And they run on and on for their buddy.
The buddies truly love their runners. They look forward to their posts, pictures, packages, medals…they can be part of a team that runs (even if they themselves cannot). They can impact others in a profound way – by sharing their beautiful, strong spirit; and by helping with awareness. I am sure a ton of the runners have never had a close friend or relative with CP, or spina bifida, or mitochondrial disease. They may not have even known what those words mean before they signed up. But now I am certain they do. They can see past the disability into a person’s heart and soul. And when they are out and about, I know they will see someone who “looks” like their buddy or another buddy on IRun4 and smile (instead of look away or stare) – and think of Mary Elizabeth, or Joseph, or Lexi or whoever their buddy may be. And that is a good thing.

image.Mary Elizabeth with a package of goodies from The Pantermollers image Mary Elizabeth with her medal from Matt

Thanks to the IRun4 Group, we now we have warriors in Matt and in his family – running and spreading awareness about Mary Elizabeth and cerebral palsy. We love you guys.

So…who do you “run ” for?

Www.whoirun4.com

Orlando MNRI Conference

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We have been home now for a few months since our 8 day MNRI Conference in Orlando. I am still recovering. It was intense, to say the least. I met some wonderful moms of other kiddos with special needs, ranging from autism and SPD to traumatic brain injury. It is so neat to actually connect with other moms who are going through a similar situation raising and loving a special needs child (and working so hard to give that child the best chance at life) – it gives me hope and strength. Like someone else is doing this, so can I. I always think it is so amusing when someone says to me, “I could never do what you do. You are such a good mom to Mary Elizabeth”. Yes, I hope I am being a good mom to her (some days are better than others). And yes, you would and could do it too. You would rise to the challenge and do everything and anything within your power to help your child. You would gain and sharpen skills you had no idea were possible, or even within you. You would because we all love our kids. And seeing these other moms who are now extraordinary because of their kids is nice.

Anyway, about the conference. It was 8 days, 6 hours a day of intense learning for both ME and I. Our therapy is broken down into 6 – 50 minutes sessions a day. Each session works on a different aspect of the MNRI Program: Neurostructural, Tactile, Archetype, Facial, Repatterning, and Proprioceptive/Cognitive. Within each aspect of the program are important reflexes that a child has in their DNA to be able to survive and thrive in this world. For example, the Robinson Hands Grasp (Repatterning, Facial) – it is displayed when a baby grabs your finger and holds on. This reflex begins with grasping small objects (finger, rattle, toy) and develops into more complex fine motor skills like the pincer grasp (picking up a cheerio with thumb and pointer finger). If this reflex is not integrated properly (ME’s is not), It can affect handwriting and speech skills later in life.
So during our therapy sessions, the therapist gives ME a proper stimulus (in this case, places her finger on the inside of her hand at the base of the fingers….then does the correct motor response for her. She squeezes ME’s hand shut in a fist and shows her how to “grasp” her finger. And repeat. The idea (in my simple mom terms) is to give ME the proper experience of Hands Grasping over and over again so that it overrides her dysfunctional (even pathological) pattern. Like rewiring (or repatterning) her brain. It is fascinating and very simple at the same time. And it requires a TON of work – repeating the reflex correctly 3 times a day 5 days out of the week…and ME has over 30 reflexes to work on! So my days are consumed with teaching ME the proper way of doing everything, because her brain injury has prevented her brain from doing that in the past. And she is capable of learning the new and correct reflexes – she could never “step” as a baby (you know, when you lean a new baby forward and they step, step). Me would never do that, but she is starting to do that now!! She has “learned” to step! And so I continue her reflexes all day, every day in hopes of ME learning how to walk, talk, etc…in the future. I believe in this program and I believe in my baby girl!
The Family Conferences are our opportunity to let the “professionals” work on ME and for me to learn better techniques, better quality of touch, and more about the brain. They are critical to our success. It is a “break” from the physical monotony of our life and an intense ramp-up of the intellectual and emotional (even spiritual) part of my life. There were lots of tears (mostly by me, not Mary Elizabeth). Tears of hope, of joy, of exhaustion, frustration, and sadness. Mary Elizabeth was such a good, strong girl this trip! She managed to keep it together the entire first three days, and had her first melt-down at the end of hour 3 on Day 4. She did some good screaming, and it was over.
Then she had another scream fest the very last session on Day 8 (I cried). Not too bad for a 3 year old who has had 48 hours of HARD WORK! I am proud of my big girl.
I could not have survived without Christina, ME’s nanny…she was a wonderful helper and a good friend during this trip. I fell in love with our therapists – Jennifer, Sue, Gayle, Boutaina, Lori, Mira, Tina, Ilena, Joan, and Pamela. Thank you ladies for loving my baby girl and giving her such good work – you are changing lives and making a difference. Thanks to my friends and family who prayed for us, sent funny messages when I was low, or just remembered we were there. Life moves so quickly and we all have so many things to do; I am amazed at the people that surround us and love us in the midst of the chaos. We love you deeply.

We got an Upsee!

imageMary Elizabeth recently got an Upsee by Firefly (www.firefly.com), which is a device that gives her the opportunity to “walk” while attached to an adult at the hips and feet.  It was invented by a parent of a child with special needs, and it has been nothing short of a miracle for some families. 

I want Mary Elizabeth to be able to walk one day.  We are very aggressive in her therapies to try and provide that experience for her (with or without the aid of a walker, gait trainer) every day.  I pray about it. I dream about it.  And the Upsee has given my sweet baby girl a chance to actually do it. 

When it first came in the mail (all the way from Ireland), I wanted to try it on immediately!  But I waited patiently for Seth to get home so we could try it together as a family.  Once we got Mary Elizabeth strapped in and attached to Seth, they literally took off!  It is hard to describe how those first few moments, but I will give it a try: joy, excitement, and hopeful.
We walk everywhere in our Upsee – inside the house looking in mirrors and touching the “babies” on Benjamin ‘s bed, outside to check the mail or look at our garden. We step, step, step all over in the hopes that the pattern will somehow help Mary Elizabeth later when she tries to walk in a gait trainer, and hopefully a walker.
Now, walking in the Upsee is not easy – it is a test of balance and coordination for the adult. It requires muscles not normally used for walking, primarily the outer thigh and top of foot. Going down the stairs takes two people, and the whole walking process is extremely slow. But once Mary Elizabeth relaxes (and doesn’t get spastic and fight the steps), we can get into a nice rhythm. Step, step, step…
Thank you, Firefly, for this gift. image

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Team Mary Elizabeth – Meet Miss Christina!

imageMary Elizabeth has a new nanny, and she is nothing short of a miracle for our family.
Miss Christina recently moved here from North Carolina, and she has tons of nannying experience – she once took care of triplet boys!!image
She is a very hands on, responsible person who fits right in with our family. She sings and participated in our regular “dance parties”, she is learning lots of MNRI reflexes easily (which is a HUGE load off my shoulders to be able to share that responsibility), and she is a positive presence in our house. Miss Christina also has a wonderful spirit – she is joyful and shares our Christian belief system (she spent a few years in Thailand as a missionary); which makes discipline and daily living so easy (when you have similar do’s and dont’s for kiddos).
We are thrilled to have Miss Christina join our team – Welcome Miss Christina! We (already) love you!image

Face paint, egg hunts and cousins…oh my!

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Mary Elizabeth had a wonderful week celebrating Easter with family and friends. 

Nana, Virginia, Owen and Aunt Emily stayed at our house during the Easter break.  Benjamin and Mary Elizabeth had a blast playing with their cousins, staying up late, and snuggling with Nana!  Mary Elizabeth watched the kids (neighbors, friends and cousins) hunt eggs in our backyard from her favorite swing, then we all enjoyed the beautiful weather with a crawfish boil in the country.  ImageImageImageImageMary Elizabeth was already dreaming of a certain Bunny when B, O and V dyed eggs…ImageThe kids loved seeing what the Easter Bunny put in their baskets!  Mary Elizabeth enjoyed a “Peeps lollipop” and laughed at the DVD the bunny left for her – Turbo!  Benjamin was just happy to finally get Frozen (and lots of other goodies).  ImageImageWe somehow managed to have a delicious breakfast of Resurrection Rolls (http://www.catholicicing.com/how-to-make-resurrection-rolls-aka/(Rolls), bacon, biscuits and fruit and still make it to church on time!  We celebrated Jesus’ Resurrection and Ascension into Heaven – Alleluia! 

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Then it was back home for a yummy BBQ lunch.  We truly enjoyed the time we got to spend with our family and friends – riding bikes, water fights, watching movies and eating popcorn, and trying to escape our crazy (and lovable…even though he eatsImage

 

EVERYTHING in sight) puppy dog, Levi!  

 

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Team Mary Elizabeth Tees

imageI still have Team Mary Elizabeth tee shirts for sale – please purchase a tee to show your support for Mary Elizabeth!image

I have adult S, XL, and XXL sizes still available. I also have tons of kid’s tees – every size. Kids tees have been shrinking a bit in the wash (100% cotton), so buy a size up.image

Tees are $20. Thank you so much for supporting our sweet girl! Please send me a pic of you wearing your tee!image

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