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Wednesday, November 19, 2014

Shriners: visit 1 (lower)

Hi all! We are so excited to report about Lightening Baby's first visit to Shriners Hospital in Northern CA. From the beginning of our visit we were impressed by their friendliness and compassion for our girl.

There are so many details that I don't want to leave out...but am exhausted so we'll see how much I get down ;)

Our appointment was on Friday afternoon. We had planned on dropping our big kids at my mom and step dad's house on Thursday morning around 9am and get on the road. Best laid plans...

Here's how it materialized. We had not been to real Chinese food since arriving back to Fresno from China. We were so excited to show the woman at our favorite neighborhood Chinese food our little girl. We told her about a year ago that we were adopting and she was excited. When we arrived all was well. We enjoyed our favorite dishes...du du duuuu...then I asked her to speak to our baby girl in Mandarin...BAD MOVE!

We finished our meal and went on to our big kid's activities. We dropped C-dub at youth group and were off to gymnastics with the big girls. Baby girl was super clingy. When we got home and needed to pack the car for our early departure every time Daddy left the house to pack the car baby girl cried. She hasn't done that in a long time.

We all went to bed just fine. Baby girl only woke up once or twice...normal.

In the morning Dad was out the door for an early meeting and the rest of us were to meet up with him at my mom and step dad's house. Lightening Baby was up at 7am (normal) but then laid in bed with me, drifting in and out of sleep, until about 8:15am. Weird. With our planned departure time getting close I got her up and went to draw a bath. That usually perks her right up. She loves her bath and her ducky tub!


{We just don't want to get up}

This is where I started to get a little worried. She was slumped to one side. No noises. No words. No smiles...weird!

I got her out, dressed her and took her temperature. Normal. Hmmm...

A long time friend and the wife of our buddy family in the adoption process text me right around this time of the morning. Blessing. She was texting me back about something earlier in the week. What AMAZING timing!  It dawned on my husband that it was probably the Mandarin that was throwing her off. I mentioned that to my friend, who has adopted 8 children from China, and she said that was probably the case. POOR BABY GIRL! Adoptive parent FAIL!

At this point I had already had all of the big kids shower and get ready. It was now 8:40am and I knew that instead of Dad meeting us up north he needed to come home. I sat down on the couch and she fell right to sleep on me...like really asleep! Weird!

Since I had been holding her all morning I was not showered or ready to go at all. I decided to put baby girl in her bed if she was really going to sleep so I could get a move on.

I was able to get the rest of us and our things ready. Dad arrived back home around 9:30am and we were out the door by 10:30am. Whew, that was weird!

So off we went...


After dropping off the library books and big kids we got a few other items at the store...it was noon. :/ Wow, talk about not as we had planned. Oh well. That is why we decided to leave a day early for our first visit. Lightening Baby was not herself still. She slept the ENTIRE drive to Sacramento. Weird again but kind of nice since this was her first long trip since arriving home from China.

Baby girl woke up as we pulled into the parking lot of our hotel. We were blessed in a huge way! Some friends heard we were going to go to Shriners and asked if they could get us a hotel room. AMAZING! I cried when my husband read me that text (about a month ago). It was a beautiful room ACROSS THE STREET from the hospital entrance. So cool!

{Finally at our hotel. One of her newest tricks, that she thinks is pretty funny, is walking backwards. Silly girl could hardly stay on her feet after a 3 hour car ride.}

Baby girl perked up after her long, sleepy morning and was walking and "talking" in the doors, through the hotel lobby and right up to our room, charming everyone along the way. Normal ;) We got settled and then set off for Old Town Sac for dinner. It was a beautiful night. We enjoyed some eats, some free candy at a candy shop and even stopped off for a souvenir. I am a sucker for a memory-maker! One of the cute shops we found was a sock shop. I thought it would be fun to get our tiny girl some tiny socks to remember her first appointment to Shriners for her tiny feet. She was quite happy to carry her bag around the candy shop.

{With her bag of new socks}

It was wide-eyes for our tiny girl into the evening. She didn't feel any sort of sleepy until 10:30pm! Ahh! Luckily our appointment wasn't until 9:30am the next morning and there was a cafe in the lobby for breakfast.

Friday morning we were ready to take on the day. What an exciting day for our girl! This orphan-no-more was about to get some news. We were PRAYING for no surgery and no shots.

In the lobby we ended up talking with a family, over breakfast sandwiches, that we had seen the day before. I noticed a girl in a wheelchair when we walked through the lobby on Thursday. It was her family. Emily had been burned in a house fire when she was 16 months old. 85% of her body was burned. She was at Shriners receiving yet another surgery. Over the past few days Emily had her 110th and 111th surgeries since she was 3 years old. This family has been coming to Shriners for the past 10 years! AMAZING! What an amazing way to start our day. We were blessed by their cheer and love for the staff at Shriners.

Off we went...across the street.

{Waiting against the clinic wall just like dad}

We started out by checking in at the clinic desk and hearing that they were running behind. One of the doctors was called in to an emergency surgery. (We had not yet heard who our doctor would be.) We gave our info and then went to the lobby to wait. There was a small waiting room that seemed claustrophobic. We opted for the larger front lobby that had an open ceiling to the next floor and windows across the entire front of the building. They had magnet toys in each waiting. Our baby girl got the hang of them and enjoyed them very much. They were a good distraction.

{First tears of the day. Each chair that dad sat in our girl wanted.
You can't always get your way little one}



Each area we were in had families milling around. It was fun to see so many children with limb related discrepancies playing, walking and even running. We waited and waited...then I spotted another family from Fresno that we know. It was so fun to have our appointments end up on the same day. Their two girls (both also adopted from China) are 7 and almost 9 I think. They are in gymnastics class with our big kids. We talked with their for almost an hour. They mentioned that the wait is not usually that long.




{Our girl loves dogs. It was so fun to see this black Lab strolling through the lobby visiting children. A great distraction while we waited. We were told by the handler that each animal has a trading card to collect. How fun is that?!}

Finally it was our turn. We made our way back to the clinic, Lightening Baby walking the whole way. Once in the back office we went to the weighing and measuring area. I was looking forward to this so much! I was excited to see how our girl had grown in the almost 3 months that we have had her. I was anticipating a heavier and taller baby. The weighing and measuring were the only peaceful things about the appointment for the rest of the day. :(

** Weight 23.2 lb. Height 30 1/2 in. **

Baby girl gained 1 pound and lost in height. Huh? They must have measured her incorrectly as our last appointment in town, they are prone to doing that. Anyhow that's what she is now.

The next step was to take her temperature. The very nice girl tried using the head wand that they just move across your forehead. (Insert screaming, climbing up me, holding on so tight, crying...) She freaked! My only thought was that she was recalling her last doctor's appointment that ended in two shots. Poor thing! From there we went into our assigned room. She calmed.

We gave a bit of info and the medical assistant said that the PA would be in soon. When she arrived she explained that she would see us before the doctor and started talking to us about our girl while checking her out a bit. Again insert freak out. Baby girl didn't want anyone touching her. She clung to me like "Gotcha Day".

:(

We explained to her about our recent adoption and her last "doctor's office encounter". She was amazing, understanding, sweet and compassionate! After taking a quick peek at her limbs (from 3 feet away) she got closer to check her spine. She mentioned that sometimes a child's spine and something else (I didn't know what it was) would also be affected. I pulled up the back of her shirt while the PA checked, much to our girl's protest. The PA said she looked great. Whew! One check on our list of prayers for our girl. I continued to hold my girl tight while she clung to my neck and waist with her tiny self. Oh how I love THIS girl! It's amazing to me how our love can grow so quickly!

She left the room and I calmed our girl. After she calmed down I put her on the ground to walk around a bit (shoes off). I was hoping that one of the doctors would see how amazing our girl is when she's not scared. She was walking and talking...then the door opened. Baby girl's back was to the door and the PA entered very quietly. We glanced at each other and smiled. She gave me the thumbs up about her mobility. I smiled. I am so proud to be her mommy!

After that short exam we were off to X-ray. Oh Lordy we had no idea what the next hours would hold.

We were greeted by a sweet X-ray tech. He was a young guy completing his hours for school. We also explained to him how our morning started. Luckily they ordered her upper and lower X-rays so we don't have to go through all of that again in a few weeks. We started with her standing (trying to stand even though she was screaming and wanting me to hold her tight again). Ahhh! Poor girl!!!


I (the mom) am usually pretty cool in these types of situations. We have a job to do...get X-rays...and we're going to get it done. Even if it's hard it needs to happen for the best of our girl. So I tried to distract her, hold her, stand and sit in crazy positions to get it done. After getting some of the lower pictures done we checked them on the computer. The whole floor heard her I'm sure. While looking at the pictures a more veteran tech made his way into our room. I think he could tell our girl was a challenge to get good pictures of. By this time it had been 30-40 minutes. I was holding our over tired and upset girl. 

**Side note: The X-ray tech in training said his friend has the same shape feet as our girl and he played baseball and football growing up. Cool!


**Funny story inserted...our girl loves her suckie (pacifier) which fell on the ground during one of her crying spells in the x-ray room. I asked David to pick it up, he didn't hear me. The X-ray tech did hear and said,"I would throw that in the trash", as he winced. I said,"Oooo, good idea," with a grimace. (More to come about this.)

{Me trying to hold her in the correct position (her screaming and struggling) while trying to keep my back from going out...again. Constant pain all trip but better now.}

After lots of rocking, holding tight, soaking up the smell of her sweet hair and singing Baby Signing Time my precious and petrified baby fell asleep in my arms. Talk about a reminder of Gotcha Day...but now I know her. I know what makes her tick and I know what makes her feel safe. Thank you Lord for that! She finds rest in my arms. What a privilege to care for this sweet and spunky girl!


We got the rest of the X-rays perfectly while she was sleeping. By now it was 12:45p. We were all hungry but had to go back to our assigned room to wait for the doctor. When we got back we heard that he had gone to lunch but that we would be seen first after lunch. (Only a 5 minute wait)

**Suckie story continued. I asked David for a suckie...a new one. He said she had one in her mouth. THE ONE FROM THE FLOOR OF THE x-ray room. Yuck! Shoot! We threw that one in the trash in the exam room. I asked David for the new package of two that we bought on our way out of town. After opening the new package he handed me one. It was dirty and sticky. YUCK again! (From a new, unopened package) Then he handed me the other one from the package. It had liquid in the nipple! YUCK...AGAIN! Shoot. We decided to put those back in the package and return then when we got home to Fresno. So we had to fish the one we threw into the trash out and use it. YUCK a fourth time. Oh well...

The doctor came in, as well as the PA from earlier, super causal. Baby girl still sleeping at this point. (thumbs up) After their evaluation of her X-rays and looking at her feet up close this time, since she was sleeping, they determined that she has fantastic "hind feet" and all of the bones from her ankles up are GREAT! Another check on the praise report! Thank you LORD! The PA was able to share with the doctor what she saw earlier as far as her walking. YAY!

Spine--good
Hips--good
Knees--good
Ankels--good

Such a sigh of relief.

From there we asked about her condition. Was it genetic or from something her mother might have taken? We will never know for sure but he said that with something like this it is most likely genetic. Good to know. Not sure if we will ever see a geneticist. One thing at a time.

The PA went into the hall and found the head of prosthetics and orthotics. He came in and sat on the exam table. It was like a casual conversation with friends. From there we talked about their plan for our girl.

Shoe-fillers...

We look forward to foot molds when we go back in a few weeks for her upper evaluation. They mentioned two options for her feet. We'll see what they come up with. We are SO THANKFUL for Shriners and their compassion and passion to help kids. (Big smile!)

We ended our appointment at 2pm. At 1:45pm dad had to hurry back to our hotel (across the street) and check out. Blessing yet again about our hotel placement that he didn't have to miss any of the appointment to go check out...thumbs up!

And the last stop to our very long day at Shriner's Hospital was to the Medical Media Department. Baby girl and I made it up to the 2nd floor for actual photographs of her hands, feet and face for her file. The woman who worked there was just so sweet. I quickly explained our day to her just in case we went back to screaming...she was great! Another great staff member to make our day a success!



We got the pictures done with minimal tears and our Lightening Baby was smiling and happy by the end. The woman even gave her a Beanie Baby to end her day. She said that she wanted our girl to end with something good to remember. Sweet!

When we left the Medical Media room we found this...


{The toy room!}

{There's my girl. Her electric smile is back and she sure loves to scoot around.}


Golly, what a L-O-N-G dayyyyyyy! We headed to lunch (2:30pm) and then we got on the road. We hit traffic in every.single.city on the way home. I thought she would sleep from exhaustion all the way home...NOPE! Fussed, cried and all together not happy. I sat in the back with her and we made it home after about 4.5 hours. There was an accident ahead of us so we hit bumper to bumper traffic just north of town.

But good news was that once we got to my moms and step dad's house to get the big kids she was tired but her sweet self again.

Thanks everyone for your prayers and concern for our family and our Lightening Baby. She is a fighter and we are excited to see what God has for her!

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