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!*

6 Months

6 Months

Nicknames: Sweets, Adster, Poopie Pants Arnold, Ads, Sweet Girl

Temperament: You have such a sweet and happy temperament! You seem 10 times better than a few months ago. I think you feel physically better and aren't in any more pain. You usually are smiling when you wake up and you love to smile at your mom, dad, and people you know. You like to smile at strangers, but stick out your lip and cry if they get in your face and are too loud.

Things I could do without: You have discovered out to squeal, and, at times, it can be so loud. Also, I don't like that you hate eating from a spoon right now. We want you to enjoy that process!

Things you could do without: Eating from a spoon, baths (you still don't like them too much), getting lotioned up, getting your medicine

Item/toy we love the most: Anything that makes noise (it is so entertaining to see you discover it!), your baby bjorn or moby, or your snow suit (we really love snow shoeing with you!), your paci

Item/toy you love the most: Your play mat, and anything you can stick in your mouth, your paci

Things I'm loving the most right now: Your smile. It seriously can turn any day around. I love how curious you are about life. You love observing everything and you are very deliberate about what you pick up and hold on to. I love that you recognize your Dad and I and laugh, giggle, and squirm in excitement when you see us (that makes my heart so glad). I love that you feel better and are no longer in pain (for the most part). It was so hard the first few months of your life, sweet girl!

Things your loving the most right now: rolling around on the floor, picking things up and putting them in your mouth, learning how to pull your paci in and out of your mouth (and chew on its sides), observing the dogs run around, seeing your grandparents, loving life. :)

Six Month check up stats: **Our check up is next week, so we'll know then! :) **

2 Months

2 Months

Nicknames: Sweet Adaline, big girl, smuchims, Adster

Temperament: You still don't like to have your diaper changed, but I think that is because you just don't like to be naked. Although, baths are getting better. You are starting to like your play mat, especially when we are outside. You love looking around at everything and you are starting to smile more and more. :) You sometimes scream when you are eating, but I'm hoping that will get better very soon.

Things I could do without: Knowing you don't like to eat, still. Formula on all your clothes. Doctors appointments.

Things you could do without: Diaper changes, sometimes bath time, sometimes lying on your back, taking your medicine

Item/toy we love the most: Your play mat, sleep sheep, and swaddle

Item/toy you love the most: You still love your Bob Marley lullabye CD and bouncy chair

Things I'm loving the most right now: Your precious smile, seeing you put on the pounds, seeing other people dote over you, having fun creating outfits for you now that you fit in all your clothes, your coos, knowing that you are so healthy that we only have to go to the doctors at your scheduled check ups, when you sleep through the night (4 days in a row, now!), going jogging with you and seeing you look around at everything we pass

Things your loving the most right now: Seeing and hearing your Dad (you just love to look at him!), being held on our chests, being able to kick and stretch your arms and your legs

Two Month check up stats: Length: 20 inches Weight: 7 pounds 3 1/2 ounces and steadily gaining weight. :)

A Recap

The Arnold Clan had a very busy September.

After all of our family (Nana Sue, Papa Jim, and Grammy) left on August 28th, it was the first time Chad and I had been alone with Adaline! We were excited to start getting in a groove with our new family. :) However, that week Adaline started to vomit (and I mean projectile vomit. She even got my face a few times) every thing she ate. At this point, we were going to the clinic every week to have her weight checked because she was gaining weight very slowly. That week at the clinic I was told to start giving her formula. This was a very difficult thing for me, as I enjoyed breast feeding and wanted Adaline to have the best source of food available--but we needed to have her on high calorie formula because she was not up to her birth weight yet (at 4 weeks). So, we made the switch but she vomited that too. Here's a recap of what all happened next for our sweet Adaline:

Wednesday, September 1: We went to see our doctor, Dr. Nill, about the vomiting. He ordered an ultra sound to check for Pyloric Stenosis, but it came back negative. We were sent home with medication for acid reflux (but Dr. Nill was not convinced that she had that either).

Thursday, September 2: My dear friends, Emily and Michelle, arrived from Louisiana for a visit. Adaline was still projectile vomiting at this time, so I made the decision to take her to the emergency room. That night, the ultrasound was positive for Pyloric Stenosis and our sweet Adaline was admitted to the hospital and was NPO (nothing by mouth) until her surgery Saturday morning.

**Me, Emily, and Adaline**

**waiting for surgery at Denver Health**

Friday, September 3: We were transferred to the Children's Hospital where she would have her surgery.

Saturday, September 4: Adaline's surgery to repair her pyloric muscle (as it was too thick) was a success! They were able to cut the muscle by 3 tiny incisions in her tummy. We started the process of slowly feeing her.

**comforting our precious little girl**

**waiting for surgery**

Monday, September 6: Adaline tolerated food overnight and we were discharged from the Children's Hospital and were able to spend time with Michelle and Emily (Chad and I stayed at the hospital the entire time Adaline was there). **A note about the Chidren's Hospital: They were amazing! Made this horrific experience better with compassionate, patient nurses and surgeons**

Wednesday, September 8: I took Emily and Michelle to the airport (a day after their scheduled day to leave since their flight was cancelled! I was blessed to have an extra day with these two most amazing women). I took Adaline to the surgery clinic at Children's because I thought one of her incisions was infected. Unfortunately, it was not only infected, but it had more or less herniated (some of her fatty tissue from her stomach was coming through the incision). Once again, she was admitted to the Children's Hospital to have surgery to repair this hernia.

**the hernia**

**after her surgery**

**recovering**

Thursday, September 9: After Adaline tolerated food, we were discharged home, again.

This experience with Adaline was both terrifying and exhausting. I think being a new parent is hard already (with all the anxiety of taking care of a little human), but to take care of a sick and traumatized infant is extremely difficult. Our little girl is a trooper, though, and has blessed our lives in more ways than I can count. Adaline is now on medication for Acid Reflux and is all healed from her surgery. Although, I think eating is still hard for her (because it was such a negative experience), we hope and pray she will enjoy that soon. She is also gaining weight as well, and it is so great to see some chub on her! We are able to go out about and enjoy life together outside of a doctor's office or hospital.

**Chad driving to Estes Park for our day in the mountains.**

We have been blessed with friends and family who have been so very supportive during this time. Whew..I think life is getting to be normal...whatever that means. :)