Vivi had to be woken from a sweet slumber in order to get to Boston Children’s on time.
By the time we got in the car, she barely had her eyes open.
Thankfully, she had an hour and half ride in which to wake up.
As soon as we were checked in and ushered to a room, the kids were weighed, measured and evaluated.
As expected, Jude’s and Shepherd’s feet are fully corrected and doing wonderfully. No changes to their routine of boots and bars at bedtime. Good news!
Then it was turn for Vivienne, which required a much more thorough evaluation.
Her feet have been well corrected, so no additional casting will be necessary. Only boots and bar at nap and bedtime… yay!
But the muscles in the top of her foot don’t function properly. She is not able to lift her toes either purposefully, or reflexively. Hence her gait, which resembles someone wearing flippers.
Someone very cute, that is. Wearing adorable flippers, of course.
So AFO’s were prescribed and it is expected that she will need to wear these indefinitely to help her walk more correctly and more comfortably.
Next, we moved on to other pressing Vivi issues: her arms, the possibility of dwarfism, how cute she is.
And yes, we actually did discuss how cute she is.
Next we were sent for xrays, to hopefully give us some answers to those questions unrelated to her cuteness. Vivi tolerated it all amazingly well, especially considering she had to hold her arms in uncomfortable positions for extended periods of time.
She did way better than I would have done. Notgonnalie.
As soon as we finished in radiology, we headed back to orthopedics. To wait on the results and one final visit from the doctor.
I was a bit anxious to hear the results of the xrays. After all, we’ve been waiting a long time to know what is going on under all that baby cuteness of hers. We’d requested xrays shortly after we accepted her referral last January. Not surprisingly, we never received any.
At last, yesterday brought some answers.
Vivienne’s elbows are permanently dislocated. This might cause her issues in the future, or it might only mean she can’t carry ridiculously heavy loads.
I think that’s the same condition I have.
Oh wait, mine is called laziness.
Also, by looking at her xrays, the doctors determined Vivi does not have achondroplasia, the most common form of dwarfism. Happy news for her.
But does she have another form of dwarfism?
We don’t know. And we won’t know for a while. Vivi was referred out to an endocrinologist/geneticist and upper extremity specialist for further testing in the next few months.
The last piece of news we got is that her arm deformity is very uncommon. And progressive. Her condition will continue to worsen, eventually requiring surgical intervention. The upside is that the surgery will be for functionality and not pain relief.
I was so grateful to hear that her arm deformity won’t eventually cause her pain.
Because I just couldn’t bear that thought.
Truly, she is a gorgeous baby! The face of a baby doll.
Keeping my fingers crossed it works out for her. I have a feeling this baby will overcome whatever life throws at her!
Can I join the ranks of those smitten with Miss Vivi? Because really. REALLY. Your whole family is beautiful, and she sure does fit in. 🙂
You are so right–she is CUTE! Glad to hear her arms won't cause her pain. Hope it stays that way!
I'm happy that you are getting some answers about that absolutely beautiful, precious, adorable, gorgeous little girl of yours.
That little girl's smile is contagious!! Praying that you can continue to find just the right medical people to bless her–I'd say she's already being blessed in every other aspect!! I mean, seriously, look at that smile! And even when she's sleeping, she is so at peace. She's just where she's supposed to be!
yes ! I agree too. Miss Vivi is so cute . So glad you got answers and it is amazing what can be done now with surgery and therapy.
What a sweetie-pie! And she IS just yummy cute. I'm glad you confirmed that with the medical experts! Also it's wonderful that you got some answers-FINALLY! Even if there are still some unknowns. And I hope that as time progresses she finds great strengths in her uniqueness. God has made her especially wonderful for very special purposes. YAY!
Glad to hear it's good news all around! And yes, Vivi is very cute. :]
She's a little angel. Glad that things look manageable. Thinking about you all.
She has definitely got the cuteness working for her!!!
Glad that y'all got some answers…
As always, lifting her up in prayers!!!
Stefanie,
Vivi is so gorgeous, truly an angel.
We have been through a similiar process with our daughter to determine if she has Osteogenesis Imperfecta (Brittle Bone). We have seen all the specialists you mentioned, most recently the Geneticist. Hopefully soon we will both have an answer. Either was our girls are amazing!
If you say very here, this goes for Vivi, I thought yesterday that she had a serious problem. She is going to be big as other girls, it is well for her. And her character is strong, with humour, she can overcome a lot.
look at her!!! Yes she is full of cuteness…I just want to eat her up she's so stinkin adorable!!!!
I will continue to pray for that sweet baby girl…hoping for good news. It's all in God's hands
{{{{{hug}}}}}} Forgive me for not commenting very much I have been so busy but I do stop by a lot for a sneak of cuteness from your adorable children : )
Sounds like good news! Seriously, she is stunning! Cute, smart, and strong – she's a triple threat (in a good way of course)!
All the best,
Nicole A. in OH
She is so very beautiful. GOD has great things in store for her!!
Yep, so cute! Sounds like mostly great news! praying 🙂
Put me on the smitten with Vivi list, she really does have her own fan club ya know.
Thank God surgery is an option for her arms, continuing to pray for her.
What a precious little cutie! So thankful the drs were able to give you a prognosis and you know what is ahead. Most thankful that there will be no pain for her. I couldn't bear it either! She is just a dream of a little one!
blessings!
Sharon
Amazing news for Miss Vivienne!! I want to be a fan of Vivi Cakes too – SUCH a gorgeous baby girl!! And seemingly, SO.HAPPY. Can some of that rub off on ME?? (well, that AND some of her cuteness!!)
Grateful to her that the appt went well. Out of 10 she is a 20 in cuteness!! And a blessing to everyone!
Praying that God is with your sweet girl every step of the way! praying for healing for her body and wonderful, skilled, knowledgeable Doctors in her future!!
God bless her!
So glad things went well yesterday.
Add me to the smitten list! She is just adorable!
Oh I am so glad she did so well on her visit. My daughter has also been to the geneticist and has regular appointments with the endocrinologist for the rest of her life with her Turner Syndrome diagnosis.
Just be prepared for potentially big far reaching statements from the genetics counselors. I recall being slightly devastated by all that they told me and afraid of every day life – only to find that our daily life is just fine and we deal with her uber cuteness as well 🙂 They make such big broad terms sometimes – ugh! Oh and they take big draws for labwork 🙁
The doctor said last week that my daughter's strong personality and confidence will override anyone's possible perception of her due to her medical condition – BIG SMILE!
If you have any questions, contact me on the Gutian board.
Blessings,
Shirley
Mommie to Lillie Mei, Gutian girl
Whatever her condition is, she is a trooper and made by the hands of GOD. Oh, the cuteness runs in the family, I am sure!
Oh sweet gorgeous Vivi!!! SOunds like good news so far…I will pray that her health continues to be strong. She is just as cute as she could possibly be.
Oh, sweet girl! I'm glad she tolerated the visit well. I'm glad you found some of the answers you needed and hopefully the rest will come soon. I think she is full of spunk and joy, which will serve her well and that she will do great things! God gave her an extra dose of cuteness to charm the socks off everyone she meets. 🙂 Gosh, I'm charmed and I only 'know' her through photos. 🙂
For one thing, she won't need to carry heavy loads…she will just smile sweetly and someone will come running.
Really, I hope you get some answers, that aren't too worrisome
Stefanie – Love the photos. Just wanted to note that the docs gave me very poor chances at thriving when I was adopted. I was 3 years old, 19 lbs. They told my mom I'd probably be a dwarf, would never be taller than 4 something, and would not be able to develop muscle tone. I'm now 4'11" and have run 2 marathons and served 7 years in the Army. I know medicine has come a long way since the early 80's, but you never know. Children thrive in loving homes with good food 🙂
Yes, she is certainly a cutie. Glad your doctor recognized her cuteness too!
Sounds like it was a good visit, with some answers, I will keep you all in my prayers!
SHe is so yummy!!!WIth a mama and family like yours she will arise to whatever challenges face her. I know this to be true as I have a yummy one too!!!
How could you not talk about her cuteness?!? I am seriously on pins and needles waiting. I can't imagine how you must be feeling.
Keri
That just all sounds like great news for Miss Cutie Patootie! Praise the Lord!!!!!
She is a lucky little girl to have you as her Mommy!
The best news Vivi could have is that her family will be with her every step of the way. She is still cute as a button
I joined the Vivi enamored club along time ago 🙂 She is indeed CUTE!!! I'm so happy to hear that her arms don't cause her pain…sounds like it would. I will continue to pray for answers…looks like you guys are on the right track! Hugs girl!
oh Stef ~ that IS a heavy load for one day. I can totally see why you just needed to rest and veg out for awhile after you got back home. Sometimes we just need to let things rest and process for awhile. We will be lifting Vivi up in prayer, because despite what the doctors prognosis may be, our Heavenly Father is the REAL Specialist, and He is her Creator…so NO one knows better how to treat her than her Eternal Father who loves her so! Claiming the Word over Vivi and praying for major praise reports for her future updates!
Love and hugs,
~ Tanya
Glad the boys' results were good. Thanks for the update on Vivi and sharing with us – glad there were some good news and I know that whatever the other results are she will have a loving family and her own tenacity and strength to pull her through. Love the photos – Vivi is so beautiful – love her smiles! Blessings!
Well Stef – that's WAY BETTER than bad news! Wish it was all good news – but we're parents – we make do with what we've got – right? No pain is huge – the rest is just coping!
And she is just SO STINKIN CUTE – I really don't know how you stand it!
hugs – aus and co.
As one of the many Vivi Groupies you have…I can say that I was so relieved to hear the good news about the progression of her casting and the fact that she will be able to work on her gait with some assistance.
As for her arms. I imagine that the thought of surgery for your sweet baby girl is a daunting thought but knowing that Vivi will not be in pain as she grows is just huge.
Vivi has captured the hearts of all she has encountered and I only see incredible things in her future.
If I were there right now I would be nibbling on her ears and pinching those amazing cheeks…she is sheer perfection to me!
Big hugs, Stef! So glad this first visit to the doctor is in your rear view mirror.
xoxoxo
Dita
God bless her. She is soo adorable.
Stinkin cute is what I would call her! Praise God for the good news!
That's great good new and bad news! God has many things in store for this little cutie-pie…I just know it! She is precious…
Good luck with everything and I pray that all will work out in the end!
She is so beautiful Stefanie! You handle everything with such grace – Vivian is going to be so very blessed regardless of what the Drs. say!
Blessings, Ashley
It sounds like you accomplished a lot on your first visit!! I am sure the Dr's were all totally smitten with her. I know that I am! I'm so glad to hear you heard lots of good news! I pray that the rest of the labs are just as encouraging!!
Thank you for the update … keeping you in my prayers that Vivi can overcome whatever comes her way!
Sweet Vivi is in my daily prayers! And of course she is about the cutest thing I have seen;)
Blessings!
So glad you are beginning to get some answers and I will have to agree here that Vivi is just WAY CUTE!!!!!! Keeping you all in my prayers, Stefanie!!!
Thanks for the update on the boys and Vivi. I'm sorry to hear that she has a few more issues than you maybe expected but I'm glad to hear that her arm problems are more likely to be dealt with in surgery for function rather than pain. That's good news. I'm confident that God will provide everything that she needs. BTW, she IS SUPER ADORABLE!!! 🙂