An update about our Adaline

Hello friends and family! It’s been SO LONG. YEARS. since I last

updated this blog. I realized there’s so much to update about Adaline

and life is so crazy lately that I’m going to try and invest more in the

blog. There’s so much to talk about. So here’s a brief review of the

last year and a half since we moved to Dallas, TX:

I work as a licensed social worker At Medical City in the Bone Marrow

Transplant and Oncology units. I love the work I do and the patients I

serve. I love the nurses and other staff I work with. Seriously. How

could I be so blessed to work with such incredible people? Chad is a

mortgage lender with Bank of America and getting into the swing of

things! For us, life seems to be pretty stable.  I turn 30 in a few weeks (What?!?), 

Adaline will be turning 5 August 1st, and Chad and I will celebrate our 8th wedding anniversary! I’m a lucky woman to have such an incredible husband.

Since moving to Dallas, Adaline has started therapy 2 times weekly at

Baylor Our Children’s House (physical and occupational) and sees

speech therapy at her school: Texas Easter Seals Academy. This school

and therapy have been so wonderful for her. She has grown so much in

confidence and pride! She is starting Kindergarten (is this real

life??) in August and she is ready! She is such a smart little girl

and scored 56 out of 56 for Kindergarten readiness. She is much more

outgoing than she once was and is learning to be proud and love

herself for who she is. She steals our heart every day and I seriously

could not imagine loving her any more than I do. 

She is still pretty stiff, though. Her back and hips remain rigid and we stretch every

day. She still cannot get off the floor by herself (she has to pull up

on something) and she can no longer sit flush on the ground by

herself. This does not stop her, though! Even with these setbacks, she

has grown in other areas. She is a superstar at the park and can go up

and down stairs by herself. She is able to do everything at the park

(in her own way) including climbing on rope towers, tight ropes, and

everything in between.  She is becoming more comfortable in the water

and loves jumping on the trampoline. Honestly, she is able to do

things that we weren’t sure she would ever be able to do. She is quite

resilient and we continue to be blessed by her every day

.

We do covet your prayers about a few things coming up:

1. We have a dermatology appointment tomorrow with Dr. Costner here in

Dallas. She was referred to us through Texas Scottish Rite and is an

expert in rare conditions. Adaline may have to have another punch skin

biopsy which is hard for Adaline because her skin (in the area they

will take) is unable to be sutured and we have to pack the wound. Pray

that Adaline is calm through the process and her skin heals quickly!

This appointment is a prequel to us seeing a rheumatologist at

Scottish Rite who thinks she may have something to offer Adaline

(treatment? Medicine?). Pray that Dr. Costner wants to invest in

finding a cure or treatment for Adaline!

2. In August, we have another appointment at Texas Scottish Rite with

our rheumatologist about possible treatment options? Honestly, every

time we go to a doctor who “has an idea”, it never works out because

Adaline is so rare. Pray that God would lead them to some treatment

and that they continue to invest in our sweet girl!

3. Next week (July 21st) Adaline will have surgery to remove her

Adenoids. We tried to do this in December of last year, but we found

out that her jaw could not open enough for them to properly intubate

or remove her tonsils. We rescheduled to just have her adenoids

removed (she has been sick SO MUCH this year. On Antibiotics so much

and snoring so loudly at home). The physicians are ready with smaller

tools and the option of just doing it through her nose. Pray that she

would respond well to anesthesia (she is super sensitive) and that the

physicians are prepared for this surgery. Pray that the removal of her

adenoids will be enough to keep her (more) well and help her sleep at

night!

THANK YOU for praying with us and loving us so well!

21 Months (and a brief update)

Things I am loving the most right now:  I love how much you are talking! I love watching you transform into an independent, little girl!  I love watching you interact with people and other little kids (you love other kids!). I love seeing you move more freely. You are quite an incredible, determined little girl!

Things you are loving the most right now:  You still love making messes! You love going outside and to parks. You start yelling "PARK!" anytime we pass one. You love your books. You will go to your room, sit down, and pull out all you books and "read" them.  You also love to dance and explore. 

A note to you, sweet girl:  These past couple of months, you have amazed me, sweet girl. You are starting to move more freely and become Little Miss Independent! I am so lucky to be your mom! Even though we have had some difficult moments and it was hard finding out that life may be a little more difficult for you in the future, you are resilient, and strong, and smart. Some days are hard for Mama because I don't know what life will look like as you grow and want to move more. There are moments where you struggle--not knowing how to tell us what you want or needing help getting up and down. That breaks my heart at times. I read a quote the other day that read, "There are no bad days. There are only bad moments trapped inside fantastic days". I hope that, as a family, we can learn to see that quote as true. That we can rejoice in every day as you gain confidence and more movement. Life with Stiff Skin Syndrome is a mystery right now, but we do know that you are a very special little girl. Every person that meets you sees this beautiful, happy, bright little girl. They (and we!) do not see your syndrome as a barrier to life, only an obstacle that you continue to hurdle through! I pray, every night, that you will wake up refreshed and ready for whatever the next day will bring. I pray that God will continue to heal our hearts and make you strong.  A woman on "Parent to Parent of Colorado" shared this poem yesterday, and I wanted to share part of it with you:

It is sunlight

When you practise seeing 

Strength and beauty in everyone,

Including yourself.

It is dance 

when you practise knowing

That what you do

Is the right way for you

And cannot be called wrong. 

Remember, you weren't the one

Who made you ashamed,

But you are the one

Who can make you proud.

Just practise,

Practise until you get proud,

and once you are proud,

Keep practising so you won't forget.

You get proud

By practising. 

From You Get Proud by Practising by Laura Hershey, poet and disability activist.

We'll keep practicing on all the things you want to do, sweet girl! You should always feel proud of who you are. Because who you are, is "beautifully and wonderfully made".

Also, a brief update for friends and family:  Adaline is doing great!! She is walking, starting to "pre-run", and talking up a storm. Adaline sees her PT friend, Susie, every Tuesday morning (they often meet at the park) and is improving by leaps and bounds. We have always been told that Adaline will do things in her own time. She also sees her Speech Therapist friend, Erica, every Thursday afternoon. Adaline has some problems with some sounds (like the long E sound) because her top lip is so stiff! she is getting better and better, though. She recently said 'Eye" with a long E sound at the end! She amazes me. 

Last week, we went to an OT appointment at The Children's Hospital and met with Trudy. Trudy specializes in therapy for burn victims. She offered some therapies for Adaline which, in turn, offered us hope that something may actually work for Adaline's skin!! She suggested kinesiotaping, dynabraces (for Adaline to wear at night for her knees) and myofacial release (a sort of deep tissue massage). We are waiting to hear from Adaline's doctor about how to start these therapies. It feels overwhelming to start all this (on top of her ST and PT already!), but we want to try anything that may help Adaline in the future! I'll keep you posted on all that!

Thank you for your continued support and prayer for our little family. Adaline is the joy of our lives! 

18 Months

18 MONTHS

What we call you: Poopy Pants Arnold, Sweet girl, Addie and just Adaline.

Temperament: Same as always! You are just a happy, happy girl. Even with all the obstacles in your way, you are still just as happy as can be. J

Things I could do without:  You recently started passing out when you cry really hard (like after getting your shots or when Mama says “no”). Its really scary for mama (and for you too!), but I know you will grow out of this and you are just keeping us on our toes.

Things you could do without:  You would much rather be naked then clothed. You also take out your hair bows as soon as I put one on you. Also, you really don’t care much for yogurt anymore. L

Item/toy we love the most:  I love “Adaline’s drawer” in the kitchen. It’s nice that you can play while I cook! 

Item/toy you love the most:  Your flash cards, your bag of blocks (you are really enjoying stacking things), Bonita Butterfly rocker, every drawer or cabinet that you can open, and all your puzzles

Things I am loving the most right now:  I love seeing you explore. Now that you can move around more easily—you are so independent! Even though I want you to hold my hand, you just want to do everything on your own (and that’s amazing!). I love hearing you talk and communicate more.  I just love watching you grow. You have been through so much testing this year—it’s just incredible to see you learning and developing and keeping up. I am constantly amazed.  

Things you are loving the most right now:  Making messes! You love to throw things out of drawers, boxes, or cabinets. You also love to put things back into their places.  You also love to dance. You dance all the time.

What you are saying:  Mama, Dada, Hi, Bye bye, night night, all done (you love to scream that one), dog, duck, chu chu (for train), bu (for book), this,  that, and uh-oh. You are imitating almost anything we say. And your new friend, Erika, from speech therapy, is going to help you say even more (help you loosen your skin on your face)

What you are doing: You love to dance, creep up and down stairs, draw, walk around, blow kisses.  You are just doing so well, sweet girl! 

Answers of Sorts

 It feels like so much has happened in the month of October this year. This year, it seems, has flown by (don't you think?).  There have been many many many blessings this year--but 2011 has been  hard year for the Arnold's.

But we received an answer--a diagnosis--for Adaline a few weeks ago. 

In my post about the waiting place, I mentioned that we had a dermatologist appointment for Adaline coming up. We went to see Dr. Morelli, a dermatoligist at The Children's Hospital. To be honest, Chad and I thought this was going to be just another appointment where we walked away knowing nothing more about what could be wrong with our sweet girl. However, this was THE APPOINTMENT where all our questions were answered, well, sorta. 

Dr. Morelli and his entire gang (many residents, fellows, medical students), came into the exam room that day.   After only a 5 minute exam (feeling Adaline's legs and back) and reviewing her history with us, he said that he was very confident that he has a diagnosis for Adaline. And then, just like that, he said that Adaline has what is called Stiff Skin Syndrome (or SSS). He said it is exactly what is sounds like--Adaline's skin (the sub-cutaneous layer) is simply stiff. This syndrome does not affect anything else (her internal organs and cognitive development isn't affected) but it constricts joints and prohibits some movement.  This syndrome, he said, is extremely rare (apparently, Adaline is one in 40-50 cases in the world). He said that, too, that little is known about it  because it is so rare (although we know there is genetic testing that we plan to have in just a week) . Thankfully, he said because Adaline has progressed so much, he believes she will be able to walk and live a relatively active life (with a normal life span). Chad asked about sports and other movement involved activies (that many childhoods involve), and he said to just let Adaline do what she wants. The only thing that helps? Physical and Occupational Therapy (what we already are doing!).

I felt, and still feel, a little shell shocked. How strange, after all these months, to have a diagnosis for Adaline. To have a diagnosis that no one knows about leaves us in the same place we were before--not really knowing what life will feel like in the years to come.  It feels like nothing much has changed, really. Its almost exactly what we have been thinking all along. That, although something was not right with how Adaline moved, she would work through it and be resilient and strong. That's exactly what SSS could mean for Adaline--except now we have a name.I was 

definitely sad and mourned this diagnosis at first--but then I started rejoicing that Adaline will be able to live a full life with movement!  So, we go on living (and thoroughly loving with joy) life with a plan. We plan to continue with Adaline's therapy, go to the pool, get involved in baby yoga, go to the mountains, have play dates with our friends, play at the house, watch Adaline develop, go on date nights, remain involved at Refuge Community Church, and enjoy this little family of ours. I am enjoying this journey, and my precious family, and truly feel blessed. 

Video Wednesday

Just a few cute videos to share today (taken from the I Phone)! Adaline's personality is really starting to show. I can tell that she is going to be a very sweet, cautious, loving, and rambunctious little girl!

Playing "where's Adaline". A favorite game. :) 

Walking with her push toy. This was before work one day. She is in the best mood in the morning!

Adaline and her puzzle. Haha. 

The Waiting Place

Part of the reason I wanted to start blogging again was to utilize the encouragement and support we have from all our friends and family across the country. Although some know about what our sweet Adaline (and Chad and I) have been through this past year, I realized that to start blogging about a struggle so personal and painful is really quite difficult! But, I think its a positive step. A step towards being more transparent with our struggles and perhaps finding other other families that are in this "waiting place".

One year I posted about Adaline having Pyloric Stenosis and the surgeries she underwent to fix her tummy. The last blog post I wrote in February was right before this crazy journey started of "finding out what's wrong". 

Adaline has been, for lack of a better descriptive word, "tight" since she was born. She was curled up in a little ball for the longest time. To put it in perspective, she has never been able to put her foot in her mouth, physically (although she has tried!). Her pediatrician thought that she would stretch out and that it was, perhaps, contributed to her breech presentation at birth and the pain she endured with eating after her surgeries. But, after Adaline's hips would not open normally and it was painful for Adaline to start sitting, we were referred to Orthopedic pediatric specialists at The Children's Hospital to look at Adaline's hips and bones in March of 2011. At that appointment, we found out that Adaline's bones were perfectly normal, but that her tissue and muscle were not. They were described as "doughey" and hard. 

It was after this appointment that we have started this journey to find out what is going on with our sweet girl. My heart was so extremely heavy after that appointment. I'm sure I'll write more posts on the weight that is suddenly given when you know that something (although what is not known) is wrong. It is awful.

So, after that appointment, we have been to a metabolic specialist, neurologist/muscle specialist, a geneticist, a pediatric rehab specialist, and a cardiologist. Adaline has undergone so many tests: countless blood work, genetic testing, MRI of her entire body, chest x-rays, an EKG and echo to check her heart. What we know is this:  Adaline does not have a metabolic, muscle, neurological, or cardiac disease or disorder. The MRI of her body was all normal! Her brain looked great and her muscles, bones, and tissue looked normal. Adaline is progressing amazingly in Occupational Therapy--we are actually going to not go as often because of how well she is doing (she is sitting really well, crawling, cruising furniture, and starting to walk just holding on to one hand. All of these developmental milestones have taken work, though. Its often painful for Adaline to move in new ways. She is really a trooper, though! And so so so resilient). We will continue to see the rehab specialist, Adaline's pediatrician, the geneticist, and a dermatologist (that appointment is next week).  

So, we are back where we started. The place of not knowing. The place of frustration. The waiting place. The place where God is truly refining our family (I sometimes call it a place where I am being grinded down to the bare bones of life) and growing us daily. We covet your prayers while we wait (and for the afterwards, too). We are angry and frustrated at times. So sad a times.  Most times we are laughing and joyful.  But we are ALWAYS incredibly grateful and overjoyed to be blessed with such a truly amazing little girl--who smiles and laughs all the time. Who can brighten my day at any moment.  Who loves learning and growing and developing new talents and abilities. 

The waiting place is hard. But, its certainly easier with this sweet family that I have been blessed with.

1 Year (plus some)

I know its been far too long, friends and family! I have decided to start blogging again because life is moving much too quickly and I want to keep everyone updated. Also, I thought I could use this blog as an encouragement/prayer/care site, too, as we find out more with what is going on with Adaline. More to come about all of that as well. For now, an update on our sweet girl (who is now 14 months old!):

ONE YEAR (plus a few months)

Nicknames: Sweet girl, Addie (to a lot of people), and Dad and I really just call you Adaline. :) 

Temperament: You have a sweet, sweet temperament. You take a few minutes to warm up to new people, but after a couple of moments, you are trying to make the whole room laugh! You love to laugh, too. And its contagious. You are gentle. Cautious at times. Curious. Loving. And so resilient. You are quite amazing. Its hard to believe that just over a year ago, you had your surgeries and you were in so much pain. You have come so far in just a year, sweet girl!

Things I could do without: You love to throw your paci's out of the crib when you are napping and you think its great fun. But, this just means you aren't napping. Also, you love to feed the dogs your dinner and that has caused many battles for mama and you at dinner time. 

Things you could do without: Getting dressed (you really prefer to be naked), and being held when you don't want to be--you want to be on the go!

Item/toy we love the most: Your little push toy that Bethany got your for your birthday and your rocker. You love them. I love that the push toy helps your learn to be more independent! We also love Baby Einstein videos because you love to dance to all the music! Its fun to watch. 

Item/toy you love the most: Your push toy, your sippy cup, your big nob puzzle (that you like to use as pacifiers), anything that you can pull out/toss all over the room (such as the basket of stuffed animals in your room that you love to empty)

Things I'm loving the most right now: Your curiosity. I love that you are curious about the world! You love to look in every nook and cranny.  I love your laugh. And your smile. Its a welcome relief after a long day at work. Your kisses and high fives. The way your say Mama and Dada. I love that you are learning something new every week. Your development seems to have accelerated! Its incredible. 

Things your loving the most right now: You love walking around with your walker and "cruising" the furniture. You love playing "Where's Adaline" and surprising people with your incredible smile. 

What you are saying: You are saying Mama, Dada, and, at times "Hi" and you are starting to say "Dog". You are so smart, sweet girl! 

*This was taken just yesterday. What a big girl!*