Wax On, Wax Off

I decided last night, around 4 am (after you woke me up and I couldn’t fall back asleep) that you don’t have an ear infection at all. Because of the way Dr. C described what she saw, I am fairly certain it was wax, not puss.

You are the waxiest kid I know. And I am really bad about cleaning your ears. Bad in that I do it too often and probably too deep. I know I shouldn’t, but I’ll admit it. When I SEE the wax (and honestly, sometimes I can even smell it) I am more determined than I should be to get it. With Bubby, it’s not a problem. He isn't as waxy. And even if he were, I wouldn’t try like I do with you because I am sure he would thrash and lose an eardrum. But you cooperate.

I bet I have pressed the wax into the shape she illustrated on the examining table paper. I have learned my lesson. I will resist the Q-tips. But you are going to an ENT for a second opinion and possibly a wax extraction.

The good news is that you are feeling much better today. The bad news is that it wasn't well enough, fast enough, and the mini vacation we had planned needs to be postponed. The worst news is that now Daddy is starting to feel bad.

Ear, Earl, Early

You have been sick for 5 days now with a fever that can be brought down with meds, but just can’t be kicked. Now you have developed a cough (I believe courtesy of Brother), and are overall lethargic and weak, so last night I decided we would head to the doctor in the morning. If they couldn’t see us, then we would pop downstairs for the ER.

At 5 am you woke with a fever of 101.5. Usually you run about 96.7, so this is pretty high for you. I gave you a dose of ibuprofen and due to miscommunication and sleep deprivation, Daddy gave you a dose as well. It was about half an hour later when we figured out you were double dosed, and I flew to your room to pull back what I could from your button. Your stomach was empty. Seriously, Aud? It takes you forever to digest your milk, but when we OD you on meds you can digest that in no time?

We all went back to sleep, and when you woke up at 9 am I took your temp. 94 flat. Oops. I called the doc to get an appt and Honey headed towards the house to go with us. By 10:00 your temp was on the rise at 96ish, when we checked into the doctor’s office it was 97.9 and by the time we left at 12:30 it was closer to 99. Who would have thought ibuprofen was so effective in reducing fever?

We saw Dr. C in the clinic because Dr. L wasn’t in. She checked you out and determined you have a slight and occasional wheeze in your chest which she prescribed breathing treatments for, and ear infections. You have never had a problem with ears, so much so that I didn’t even consider they might be a problem. That makes me a little sad. Sorry Boo. We got a script for Amox, which in the past has always torn up your bottom. Thankfully, she scored us some barrier film sticks which are awesome and will save your skin. Literally.

(Side note: Your infection somehow led me to a struggle with the word “early”. Do you think there was somebody named Earl who always showed up places before he was supposed to, and because of that they started calling it “early”? I asked Daddy and he suggested it was the adverb for ear. All interesting thoughts.)

(Side, side note: I looked it up. It comes from the word “ere” meaning “soon; before [in time]".)

Advent Event

Our family was asked to read the Scripture and light the last of the Advent candles for our Christmas Eve service at church. We agreed weeks ago. Unfortunately, you and Liam both began running fevers today. We thought you two could tough it out for a few minutes and decided to go ahead with our plans. Brother did well (although he somehow snuck his passy onstage), but you were making me nervous. As we waited backstage, you kept taking deep breaths and making a little bit of gag face. I was praying you wouldn’t get sick out there in front of everybody. Success. You managed to keep it together so well that I’m guessing nobody even knew y’all were sick. You were very pretty in your Christmas dress!

Since neither of you could be put in childcare, the plan was to light the candles at the beginning of service and then head home. But we had forgotten Daddy was signed up to help pass out the Lord’s Supper. So we stayed in the lobby and watched on the monitors until service was finished. We went home after deciding to pass on the Stephens’ family Christmas party. It’s no fun being sick for Christmas. I hope you both wake up feeling better tomorrow.

Miracle Child

Today was a special day for us. We went to Wal-Mart to meet some new special friends. This story goes back a ways, so we will start at the beginning.

Several months ago (maybe July?) Honey was in the Wal-Mart at 1960 and Eldridge when she saw a lady putting money in the Children’s Miracle Network coin canister. She walked over and said something to the effect of, “Thank you, that will go to help my granddaughter!” The lady asked to hear more about you and they got to talking. Turns out Hope works at Wal-Mart and heads up charity events for that location. Hope wanted you to be their next “miracle child”. Honey didn’t know what that meant, but it sounded like fun. So Honey said she would talk to me and we made plans to touch base with Hope soon.

Well, we knew August would be a busy time at Wal-Mart with school starting. And then Hope broke her foot and took some time off. And then I am not sure what happened, but before we knew it December had arrived. Honey called Hope and set up a time for us to be introduced. We met Hope—and many other members of the Wal-Mart team. They loved you right off the bat.

Hope called Honey a couple weeks later and asked the whole family to come in today. Daddy had the day off work, so that was the plan. But Bub is sick—he has a pretty high fever and is totally not himself. So he and Daddy stayed home while you and I met Honey and Grammy at Wal-Mart. We got there at noon and they had lunch for us. We met another “miracle child”—Kira who was diagnosed with leukemia at age 5, and now, at age 10, is cancer free. Then it was time for gifts.

When we first met Hope she asked what kind of toys you liked and what your favorite color was. I explained how you like sounds, but it is hard for you to “play” with toys. We do most of the playing for you. She said she knew you could wear clothes, so asked what size.

Here comes the craziness. Those people had 25…count them…TWENTY FIVE individually wrapped outfits for you. “25 Outfits of Christmas” Hope called it. And cute outfits too! Can you imagine? She asked her co-workers to bring in a few, but people kept bringing them so that’s where it ended up.

And the timing couldn’t have been more perfect. I just wrote a post about how long you are getting. My girl just doesn’t fit in 0-3 anymore because you are too tall. You have plenty of 3-6 month clothes for warm weather, thanks to your June birthday. But when it gets cool, the pickings are slim. Well, were slim. Not anymore. I told everyone how appreciative we are, and that those clothes are an investment. You very well might be wearing them for the next two and a half years. Then I went home and bagged all the 0-3 to make room in your closet and drawers.

You are so special Audrey. Everyone loves you.

Sheepish

Go figure.

So today Grammy and I went to Goodwill, and you will never guess what we found. Another Lambie, with the tag still on. Price: 99 cents. They obviously have no idea the true worth of a Lambie...priceless.

I have been looking for back-ups everywhere I go ever since you were born and have never found one. Within three days we get two new ones!

Silly Hat

Silly Dad is more like it.

One of these things is not like the other...

The Splash ladies at church gave you a new Lambie today! Well, you know...a fresh Lambie! The picture does not do the shabbiness of the other Lambies justice. They have each been washed more than 50 times and are well “loved”. In fact, the new one doesn’t even feel the same. Won't be long before he blends in with the others though. Thanks ladies!

Experiment

I am trying something new with your feeds. To avoid your monthly “Audrey Episode” where you vomit and have diarrhea nonstop, I am adding one teaspoon of Miralax each time I mix a container of your formula. That comes out to a little over half a teaspoon a day, spread out over the course of the day. Before I was told to give you 17 grams all at once, which is at least a couple tablespoons. And it messed up your digestive system for weeks. I am hoping this tiny, consistent amount will be enough to keep you regular. We will know in about a month!

Audrey Long Legs

You have gotten so long all of a sudden! Here you are in Bubby’s old 6-9 month jammies and they are way too short on you! I couldn’t believe it because you can still fit into most of your 0-3 month clothes thanks to your tiny waste. At this point you are about size newborn around the middle and size 9 months for the length of your legs. Dresses with leggings are about to be our new best friend.

Testify

NOVEMBER 9th

Today at my conference, we did a testimony workshop. We were given a general outline, and then time to work so that if we were ever asked our reason for believing in Christ, we would be prepared with an answer. Since my testimony is a lot about you, I am going to share it with you here. I really just spoke from the heart when I stood up front and told it to the rest of the group. So while I don’t have the exact same words, I am going to type from the heart and hope it comes out similarly.

(Editor's note: I warned the group as I got up that since I couldn't make it through their testimonies without crying, I couldn't hope to make it through my own. But I promised to try to avoid the "ugly cry". There was only one small moment where I got a little choked up, but made it through semigracefully.)


“I had a great life growing up. Nothing tragic ever happened, I never had any hardships. I am one of those who, until recently, would have said, 'My testimony is so boring.' I was raised in a godly home, and knew early in life that God loved me so much that he sent his son to die in order to pay the price for my sins, and then to rise from the dead so that I can spend eternity with him. I had good friends, good teachers. I went to a private Christian school through 8th grade, then transferred to a public school where I met my future husband. We went to the University of Texas, graduated and got married. Ten days later I became pregnant. So much for our five year plan.

“Audrey was born 9 months later with a rare genetic disorder called Smith-Lemli-Opitz Syndrome. She had her first surgery at 5 days old and has had at least a dozen more since then. We spent nine weeks in the NICU testing everything you can think of, at least twice. And almost everything you can think of came back with something wrong.

“The first six weeks before we received a diagnosis we weren’t sure if it was genetic or environmental. I was asked all sorts of questions about my pregnancy and lifestyle and family history. Now it’s clear to me that the doctors must have known it was genetic. But at the time, a lot of guilt was associated with the idea that this might be because of something I did or didn’t do. I went over every event of my seemingly perfect pregnancy looking for something I might have overlooked.

“Maybe my once weekly soda was too much caffeine. What if I took too many baths that were too hot? I went to a Caedmon’s Call concert early in the second trimester. It was really, REALLY loud. I could feel the vibrations in my core. Did it shake her up too much? These are the types of ridiculous thoughts I entertained for that month and a half.

“Often, well meaning friends would point me to the passage in John were the disciples asked Jesus of a certain blind man, ‘Who sinned, this man or his parents, that he was born blind?’

“Jesus’ response: ‘Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me.’

"I knew the hearts of my friends who reminded me of this. They wanted me to know that it wasn’t my fault, that this was God’s will for her life. But to be perfectly honest, that verse didn’t make me feel better. It hurt my feelings. Deep down I thought, Really? God is so big and so powerful, he chooses to make my sweet baby suffer every day to bring himself glory? How selfish. Couldn’t he find another way? That doesn’t sound like my God.

“Then one Sunday, God spoke directly to me through my wise and sweet Sunday school teacher. She reminded my class of how in the original language, there were no capital letters, no punctuation, no paragraph breaks.

“The NIV reads like this:
‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me.’

“But perhaps Jesus said it more like this:
‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened. So that the works of God might be displayed in him, as long as it is day, we must do the works of him who sent me.’

“These things happen. And they suck. And we wish they didn’t. But God doesn’t necessarily cause them in order to bring glory to his name. When they happen due to sin in the world, he USES them to bring glory to his name. That sounds more like my God. Able to make something so precious out of something so apparently sad.

“Audrey is one of the best things to have ever happened to us. We have had some tough moments, but overall she has brought us an abundance of joy and laughter. People from literally all over the world know of her, follow her blog and love her. Countless people have told me that because of sweet Audrey, they don’t take for granted the health of their children anymore. Or they have cut back on complaining, because if Audrey can be so happy in her circumstance, they can too. I was told of a woman who realized she needed to reconcile a relationship because of Audrey. This little girl who is “capable” of so little has touched so many people and made an impact on more than just her little world. I am sure there are many other examples that I won’t be told till I am on the other side of heaven. And when that happens, Audrey can listen to the stories with me because she will be healthy and whole and just as beautiful as she is now.”

Ouch

You had a tough day SweetCheeks. First off, you were sick Friday and Saturday. Just your usual Audrey sick—constipation that leads to nonstop vomiting and diarrhea and dehydration. So your bottom is absolutely raw and bleeding and painful. Then today, while we were at a lunch event for church, I stood up with you in my arms and noticed you were about to cry. I quickly realized your tube had gotten stuck in the crack of the chair, and when I stood, it popped your button out. That really hurts. But putting it back in REALLY hurts. I am sorry Boo. I hate it when that happens.

Later this evening, Bub was trying to be sweet and saying hi to you, but got a little rough and scratched you across the forehead. Of course, you didn’t even make a pouty face for that, because Liam can generally get away with just about anything as far as you are concerned. But it did leave a big mark, almost drawing blood, and it will be scabby and most likely scarred soon. Sorry again.

Stunt Girl

Oh my goodness. I can’t believe what I did today. You, Liam and I got to church a little late and I was rushing to get you into childcare so that I could eat, get dressed, get brother dressed, and get out onto the Path for our scene. I loaded up the stroller to the max…two diaper bags, my clothes, Daddy’s clothes, big blanket to sit on, a jacket, plenty of toys and snacks to keep Bub occupied during showtime. I wheeled you both into your classroom looking like we were moving in. Brother was fussing to get out and play with his friends, so without even thinking about it, I took him out of the front first. And the whole stroller went flying back with the weight of the bags. Immediately I dropped him and rushed to the back to see what state you were in. You were a little upside down, but not concerned in the slightest. You were laying down to begin with so fortunately your angle didn’t change too drastically. Still, I couldn’t believe I did that! I know better! I just didn’t think it through at all.

While you were brave as can be, Liam was terrified. He witnessed it all and screamed louder than I have ever heard him. He might have been more scared because I dropped him on his rear to get to you. But I like to think he was worried about his sister.

On a roll!

Audrey, tonight as Daddy and I were getting Liam to bed and dinner ready, you were laying on the floor relaxing. Daddy walked by at one point and realized you were on the opposite side he had placed you on. You rolled over! So we flipped you back over and continued getting things done for a couple minutes. Next time I looked at you, you had rolled again! So we reset you again, and again, watching you go from your side, to your back, to your other side. You flipped over a total of 8 times! That is SO BIG Audrey!


We caught a couple of your rolls on video. This particular time, Daddy encouraged you to roll by coughing—one of your favorite silly sounds. This video has an added bonus! You said “Dada” perfectly in sign language mid-roll. You were really trying to turn over to talk to that funny Daddy.

Happy Turkey Day!

We always go around the dinner table and talk about what we are grateful for. I spoke up for you saying that you have been so healthy, and doctor visits have been super rare.

Can you guess what I am most thankful for? Definitely you guys. But what I talked about was that I am able to stay home with you and brother. I would be so sad if I needed to leave you to work. Instead I get to spend my days with two of my most favorite people on earth, waiting for number one to come home.

I love my family.

Just a Swingin'

Oh my goodness. Have you ever seen a happier girl? Daddy is the most fun daddy EVER.

Mitten Kitten

You have been pulling your mittens off all day. I am super proud of you. That is a big, talented girl. But leave them on. Otherwise you will pull out all the hair we have worked so hard at growing!

Record Breaking

Audrey Lee!!

I was just scheduling an appointment to pick up your new contacts and check the fit. It felt like it had been awhile since I sat and waited on hold forever. So I checked my calendar. When we go to this appointment on Thursday, it will be a whole FIVE WEEKS since we last went to any sort of medical appointment for you.

That is by far a record! For the first several months of your life we were in the med center at least twice a week...if not three or four times. I remember being thrilled when we finally got down to once a week. Since you have turned 2, I would say average is once every other week. But never, ever as long as 5 weeks.

I think it really shows what kind of progress you have been making. We don't have nearly as many unresolved issues at this point. No surgeries on the horizon and only a few unanswered questions.

Now we can just concentrate on development!

Life is good Audrey Boo.

Home Sweet Home

I was so happy to see you when I got home today! I missed my family so much! I know you missed me too, but you didn’t appear exceptionally sad over the last few days. Brother didn’t handle missing Mommy quite as well, but you are the big sister and you did great.

Perspective

A stomach bug has been going around our church nursery. Liam got it Friday morning and I got it last night. I am in Colorado for a training conference for Teen CBS, not the ideal place for me to be sick. I am pretty miserable, and I can’t help but think of you. This is how you feel every single day. I hate that for you, but you handle it so well. You get sick, are sad for a few minutes, and then go right back to your sweet, happy little self. You’re the strongest person I know.

Transition

Today I went to a transitional meeting in Katy ISD to learn about one of our options for your education. At age 3 you are no longer eligible for ECI, and at that point you can enroll in a program called PPCD. It seems like a very well run and wonderful program, that would be a great option for many kids. Unfortunately, I didn’t get the impression that it is well suited for you.

Things such as circle time and centers are an awesome way to teach and engage children, but I don’t think you would get much out of it. For one, you can’t even really see the board or the books in circle time, and can’t get yourself around to centers. Secondly, children are placed in classes in the order enrolled, not based on abilities. You may be in a classroom full of kids with speech problems and you could never be expected to keep up in that environment. And lastly, PPCD seems geared more towards acidemics rather than development. I don’t care if you know the letter “c”, I just want you to be able to sit on your own.

There is another program for visually impaired children, and most of them have complex situations like yours. Without having seen it for myself yet, my gut tells me this will be the better option for you.

Trunk or Treat, 2010!

You did awesome on the drive home from Ft. Worth today. I don’t expect anything less than a happy camper from you.

Daddy and I, on the other hand, were worn out. We got home about 4:30, just in time to unload most of the car, throw on your costumes and leave for church by 5:00. Every year we have “trunk or treat” in the parking lot at JVBC, a fun and safe alternative to trick or treating.

The plan was to be characters from Harry Potter. I love the Harry Potter books, and with the first installment of the 7th movie coming out, I thought it was fitting. So I was going to by Hermione and you were going to be Crookshanks, my cat. Daddy was going to be Harry and Liam was going to be Hedwig, his owl. Except Daddy and I were not up for putting on our costumes. So you just wound up being a cat, and Liam an owl. Not quite as cute as I anticipated. At some point we will all have to put on our costumes so we can have a picture of the four of us the way we SHOULD have looked. Still, you were the most precious kitten I have ever seen!

(After downloading and browsing through pictures of the night, it occurs to me that there isn't a decent picture of any of us. Sorry--exhaustion must have taken its toll on my shooting finger. But I promise you were CUTE!)

Go With The Flow

I spent the morning packing up our things to meet Daddy in Ft. Worth this afternoon, but he got a later start than expected. So we went to the park with Paula and Reiner, where Brother repeatedly fell and hurt himself. I think he is just exhausted. They had a big swing that, if we lived in Dallas, I could tweak to be perfect for you! Still, you enjoyed swinging even if it wasn’t the most comfortable. You do love to swing!

We met Daddy at the hotel around 7:00, unloaded some things and then met Honey and Grandpapa in the restaurant for dinner. Of course, Bub was on the high maintenance side, being even more tired than when the day began. But I can always count on you to be my go-with-the-flow girl. Thanks for that.

Lil' Pumpkin

Dallas is so much fun!

Today we explored the Dallas Arboretum. They have an incredible pumpkin patch full of thousands of pumpkins. They even have pumpkin houses! We took lots of pictures, hoping to get one with you and Brother worth framing. Despite our efforts, I am not sure we were successful.

Liam's not looking.

Liam is clapping.

Giving you kisses.

Well at least you're having fun.

Love this picture of you--where's Brother?

This can't be good...

Yep, saw that one coming.

Well, we got a good one of the two of us. :-)

The Big "D"

I don’t think Dallas agrees with you. Last night was rough. At one point Aunt Paula brought in a humidifier to see if that might help; I think it did a bit. But there must be something in the air that is different than Houston, because you and brother both are acting like you have allergies. So this morning we had a slow start to getting out of the house. We finally got to the YMCA up the street about 12:30, where I worked out and you made some new friends. Actually, you and Bub were the only two kiddos in there. Next we headed to a pet store to see some animals, followed by naps. When Aunt Paula came home we had dinner, played outside, and took baths. Hopefully you will rest easier tonight and wake up ready to play hard tomorrow.

...a time to laugh; a time to mourn...

You were perfect on the way Cleburne, as always. You threw up big on the first part of the trip, and it made you sad for awhile. But after we got out and cleaned up, you felt better.

We arrived at the cemetery just in time, and stood at the back of the room. I held Liam and Grammy held you. I expected him to be squirmy after being cooped up in the car all day, and he did not disappoint. At one point Grammy offered to switch babies, thinking Brother might be quieter for her. Not only did he keep up his antics, but you joined right in! As soon as I took you from Grammy, your giggle box got flipped and you couldn’t stop laughing. Loudly. Was Jesus whispering funny stories about Grandma in your ear? I think she would have LOVED to hear you so happy. But maybe others might not appreciate it as much. So we stepped outside for a bit.

After the funeral we got to spend a short amount of time with our family who loves you so much. And then on to Dallas. Thankfully you and Brother both slept on the way and I had some quiet. Fun day ahead for tomorrow!

Cleansing Laughter

Tonight Daddy and Liam went to church, while you and I stayed behind to get some things knocked off our to-do list. One of those things was to clean out the Trailblazer. So you and I went up to a nearby gas station that has free vacuums and started cleaning out the past few months of cheerio and cracker crumbs. You thought the sound was HILARIOUS. I took my sweet time and got everything super clean since it was so entertaining for you. I love that you are such a happy girl!

Grandma Sembera

Your Great Great Grandma Sembera died tonight. While it is never easy to lose someone you love, this isn’t a tragedy. She was apparently ready for “the Lord to take her home” and didn’t want to do anything but wait on that. Plus, she outlived her husband and three of her seven children. We knew this time wasn’t too far off. I am mainly disappointed that we didn’t get up there in time to see her. As soon as we got word that she had given up, I called Grammy to see when we should head up to see Grandma. We thought it would be best to wait until she was discharged from the hospital (she was admitted for dehydration). Things just moved faster than we expected I guess. The good news is that we will go up for the funeral next week, and you will get to meet the rest of the family!
 
The last time I saw Grandma I was pregnant with you. You never got to meet her, but she knew of you. Aunt Nelda and Aunt Peggy would take her printed pictures from your blog and tell her about you. I wish we could have gotten a picture of you with her. With Mema and Mom in the picture, we could have gotten five generations of women in your family together at once. That would have been amazing. Now we will just have to wait till we see her in heaven. You both will be able to enjoy one another better there anyway.

Pork Chop

As I made Daddy's dinner tonight, you thought the sizzling pork chop was hilarious. So much so that you were hardly able to catch your breath. I don't really care for cooking. But that was just fun.

Noah's World

Today as I updated the picture at the top of your blog (4 months late, even though the pic itself was taken the day after your 2nd birthday), I stumbled across a feature of blogspot. I really only know how to write my posts and upload pictures…anything beyond that is too fancy for me. Our friend Mrs. Jenni says she knows her iPhone is like her brain…she is only capable of tapping into 10% of its capacity. That sums up me and the blog. I have seen other blogs with music and other cool features, but have no idea how to do them myself. Anyway, there is a page called site stats and it keeps track of how many people read your blog and what links they click on to get there. And here is the fun part. I discovered the blog of an old friend.

Noah was one of your roommates during our time at Texas Women’s. He was born 11 weeks premature, and his little isolette was right next to yours for a week or two before we moved to TCH. I remember what a feisty little guy he was. All of a sudden we would hear banging, and he would be slamming his little hand full of IV’s into the walls of his bed. Despite being so small, his face was full of expression and personality and he quickly stole the hearts of all who cared for and interacted with him. You grow to love and pray for those NICU babies and families around you—their victories become yours along with their heartache. And unfortunately, there is a lot of heartache. But Noah was such a fighter—I was just positive that given a little time to grow, he would be just fine.

I hate to say that there were times in the NICU, especially at Texas Women’s, that I looked at the situations around me and thought they had it so much better. For a while you were the only non-preemie on the floor. In fact, your birth weight of 7 lbs 3 oz meant already you were too large for the clothes provided in the NICU which were made for the teeny tinies. But I remember, as your situation began to look more and more complicated, wishing that you could be “just” another preemie. That you could “just” be small and early, and one day be healthy and strong and independent. I guess that was either my naivety—or perhaps, if I am perfectly honest—a root of bitterness and self pity that had to be cut out. I know that in some ways it was harder for the preemie parents. Those babies are so prone to infection, and there is absolutely no guarantee of survival. I was able to sit by your crib from early morning until midnight most days, doing nothing but holding and rocking you. Noah’s parents weren’t as fortunate. They were limited in the amount of time they could hold him. Often his mommy or daddy would swing by on a lunch break and just sit and look at him or hold his hand for a moment, because when it was time to take him out of his isollete, they wanted each other to be there too. I remember grandparents would also come and just sit, not willing to take that precious cuddle time away from Mom and Dad. (It was Noah’s grandpa that first told me your name meant “strength”.) A sick baby, no matter what the cause, is nearly unbearable to the entire family. Someone the other day was telling me how she had to leave her baby in the hospital for 3 days—and then as if realizing who she was talking to said, “Although I am sure that seems like nothing to you.” I told her it absolutely DID seem like something to me…that first night I left you in the hospital was the second most painful night of my life. My heart literally hurt, and I only made it to the car because Daddy helped. Eventually it got a little easier, but there is nothing like that first time of walking out of the hospital without a baby. You have to go to the car where an empty infant seat sits in the back, and then walk past the empty nursery at home. Whether one day or a hundred, it is probably one of the most difficult things a new parent could do.

I hungrily ate up his blog today to see how the last two years has been for him. Noah wasn’t discharged from Texas Women’s until a full month after us…meaning they stayed a whopping 23 weeks and 2 days. We thought our 9 weeks was tough! He was discharged after Hurricane Ike, and since their home still didn’t have power, immediately went on his first road trip to visit family in New Orleans. How fun!

I was saddened to see that Noah has ongoing complications from his preemie birth. It looks like his official diagnosis is spastic diplegia, a version of CP (cerebral palsy). As scary as the term CP is, he really looks to be doing great. He eats on his own, wears handsome little glasses, walks in a walker, is making good progress in OT and PT, and has moved (if somewhat reluctantly) into a big boy bed.

He has a beautiful, healthy little sister, named Maya, who I am sure has done as much good for Noah and his parents as your brother has done for us. And like you, Noah is loved, loving, and happy. And as parents, we can’t ask for too much more than that.

http://noah.samirahman.com/

Hooray for Columbus!

We received a special treat today—Daddy got the day off since banks are closed for Columbus Day! So we headed to the Houston Zoo. The zoo has become expensive these days…I can remember when it cost 50 cents for an adult. Now it is $11, which wouldn’t be so bad if you were guaranteed to see the animals. But more often than not in Houston, they are inside escaping the heat. Considering we are now the third largest city in America, our zoo leaves something to be desired. Big renovations are in process and a new section is supposed to open in December.

Despite our zoo not being fabulous, I have good memories of it. So today I became a member. For $46, I have entrance for the next year. You and brother get in free, and the cool part is that I can always bring an unnamed guest. So Daddy could go for free, or Honey or Grammy or Mema or whoever. And the best part is there isn’t any pressure to go and stay for the entire day. This is ideal for you since outdoors can be tough on your sweet and delicate skin. Now we can head there in the morning and leave by lunch when everyone starts getting hot and tired.

You did great for most of the day. The morning was cool enough on its own, and after lunch I put the cooler packs on either side of you in your stroller. We reapplied sunscreen a couple times and there were no complaints from you. We stayed longer than I anticipated we would, and you were a trooper until the last 30 minutes or so. At that point you started getting hot and tired and nauseous. You had one big throw up and we decided to head home. I am really proud of you though!

Here are a couple cute pics from our day.

Relaxing in the shade near the fish pond while the boys play.

Vegging out in Daddy's lap while we all eat some lunch.

Coolest seat in the house!

Always good for a smile!

There is nothing Daddy and I enjoy better than spending the day doing something fun as a family. So thanks Chris Columbus, for being credited with discovering America. We owe you one!

Occupational Thrills

Today was an awesome day during OT. You held your head very well on your own, grasped a windmill with both hands in midline, and prop sat on your own for 8 seconds! I can't imagine what it would be like if you could sit on your own all the time. That would be amazing, to say the least. Keep up the good work Sugar Booger!

Bottoms Up!

Today is the last day of your antibiotic for your eyebrow infection. Usually this med gives you an upset stomach which results in super severe diaper rash. Your skin breaks down and it bleeds non-stop. When I change your diaper, you cry hard and bite your wrist to cope with the pain. I am known to take your two week dosage and cut it in half once your eye is healed and your bottom unbearable. But not this time! We got through all two weeks with your rear intact. Thank you Jesus!

Little Miss Sunshine

It’s not often that everything lines up perfectly so that we can spend some time enjoying outside. First, you and Bubby need to be well, awake, and in good moods. Generally you are both pretty healthy and happy, but so often you take naps in a tag team fashion. If we hit three out of three as far as you two are concerned, then the weather has to be perfect. Not too hot for you (who can’t sweat to cool off), not too cold for Liam (who chatters his teeth if the AC is around 72), not too windy for you (your contacts get dried out and your eyes puff up something fierce)…and of course rain, mosquitoes, and high ozone levels keep us inside also. If all these conditions coincide, and we don’t have other commitments, we get to go outside and play. Like today!

The four of us went to Bear Creek Park to spend some time on the toddler playground. There were a lot of kids there, but mainly on the larger playground so Liam got to explore pretty much on his own—with a lot of help from Mommy or Daddy. The other one of us sat with you in the shade, listening to all the kids and feeling the small breeze. You seemed to really enjoy it. At one point we put the boy in a baby swing that was in serious need of some WD-40. But we weren’t at all surprised to find you thought the squeaking and creaking was hilarious. The “big kid” swings are at a whole different playground within the park, and we didn’t make it that far tonight. Next time we will start there, because I know you will love to sit in my lap and swing.

Despite the perfect weather conditions, your cheeks did get shaded pink. Your skin is just so sensitive. But really, you don't seem to mind your slight sunburn, and a little bit of color looks good on you!

Seven Times Seven

Brother’s name is getting popular fast. When I was pregnant with him and first started telling people we would call him Liam, everyone looked at me like they didn’t understand, and said something along the lines of “Leo? Lennon? I am sorry….what?”. Now I hear, “Oh, I love that name. That’s my nephew’s/best friend’s son’s/neighbor’s dog’s name!” I guess that’s how it so often goes. You try to get something a little different and then it explodes. Oh well.

But I am telling you all of this because out of curiosity, I looked up his name to see what the ranking was in 2010. For Liam, it is number 49. Our Liam is short for William (named after Daddy), and William is always in the top ten. So surely, there must be other Liam’s that are hiding as William from the Social Security Administration. But the cool thing is, I looked up Audrey, and guess what number you are in 2009? 49! Isn’t that fun?

Birthday Bash Benefit!

Today Mrs. Whitney came over to meet us! She is a super sweet woman who wants to help make your birthday benefit a reality. She works for RE/MAX of Texas to raise money for the Children’s Miracle Network, and offered to help Mama out. I cannot even express how pumped I am that it is mid-September and we are already getting started. If she hadn’t given me a push, I would be looking around in May wondering where all the time went. Mrs. Whitney thinks what I have in mind is very doable and definitely has the potential to be successful. Having no idea how to do a fundraiser, having her to help has given me loads of confidence already.

Our first step is to pick a location and date. I have a location in mind, but need to check availability. As for dates, we are thinking late April, early May. It is going to be a birthday celebration, but June is busy and hot. Plus if we do it during the school year, chances are better more people will be in town. Once these two things are set, we can start working on finding sponsors. Mrs. Whitney says company sponsors are often lining up to give to children and she has some good ideas of where to get donations.

This is totally outside my comfort zone and element, but you are good at pushing me to do things I otherwise might not. And it’s something I have been thinking about almost since you were born. I am so excited to see how it comes together!

On a side note: we are celebrating your brother’s first birthday in about 5 weeks. I should probably get started on that little party too…

Sad Study

We went to the med center for the third time this week today. On the agenda for today was a swallow study. Mrs. Tamara came this morning and got you good and warmed up. She tried a few practice swallows and you did great. We were super optimistic the study would go well.

At the hospital, I continued doing your oral stim while we waited. You were doing so great. Dr. T and the techs came in, we got you set up, and you were given the first squirt of barium. And it was over from there. Immediately you gagged, started coughing and threw up. We tried several times but didn’t get any further. At the end you just flat refused to even shut your mouth, so we knew you wouldn’t swallow anymore.

We got a tiny peek at what happens when you swallow. This time you aspirated a little. Unfortunately, I don’t think this is a good example of what happens most often. When we are at home, in our own environment, eating something you like, taking our time, you do much better. I explained this to Dr. T who completely understood and agreed. She said that if I felt comfortable trying tiny tastes at the house, she trusted my judgment. But from what she saw today, she couldn’t give me the green light to push the oral. As a doctor, she needed to tell me to protect the airway and let the feeds go. We scheduled a clinical visit in a few months, and at that time we will probably set up another swallow study. In the meantime, she said to definitely keep up the non-nutritive.

I wish it had gone better. Not only so that we could practice feeds more confidently, but so that you didn’t have to go through another bad oral experience. You cried at least half an hour after the study, and were very frustrated. I hate that for you.

A couple interesting things came of it though. For one, I saw your adult teeth in your gums. They are huge! Well, probably normal sized more than huge, but I am used to your tiny, half developed, no-cholesterol-helped-them-form teeth. These new teeth are not going to be fun to cut. But I bet they’ll be pretty!

Also, Dr. T said it was a good call not to do the cleft palate surgery. She had seen in the notes that we saw Dr. S on Monday and decided against it, and had assumed Dr. S was the one who wanted to delay the surgery. From what she saw on the x-ray, Dr. T says wouldn’t recommend ever closing it up. She feels like you hold your head back to keep your airway open (like in CPR when you must tilt the head back to open the airway). With your airway being so narrow, Dr. T sees the cleft as a safety valve like I do, only for oxygen intake. Most likely, air goes up your cleft, into your sinuses and down your throat, just as if you were breathing through your nose. She was surprised that you have never had airway problems other than difficult intubation before, and guesses that your cleft is what has helped prevent a trach for you. God definitely knew what he was doing when he left that little slit in the roof of your mouth!

Eye See An Infection

Your eyebrow is infected once again, so we got a last minute appointment to see Dr. U. He really isn’t sure why this keeps happening. It looks like the internal stitch from your ptosis surgery, but it is uncommon for an infection this long after surgery (over a year) with the skin intact. Dr. U thinks maybe it is an allergic reaction to something in the air. The last couple of days you’ve had purple bags under your eyes which also makes him think allergies. But just in case, you are going on amoxicillin which has always cleared it up in the past.

Rubbed You The Wrong Way

Today at school I laid you on your tummy over a Boppy and you started turning your head back and forth, back and forth. I was super impressed! I let you get a good neck exercise in, and didn’t flip you onto your back until you became irritable. Towards the end of the school day I noticed your chin was very red. Mrs. Kim made the connection… you must not have picked your head up all the way and with each turn rubbed your chin a little. A little added up to a lot because now it is raw. Poor little shnookie. No wonder you'd had enough!

Love My Cleft!

It has been almost two years since we have seen the plastic surgeoun about your cleft palate. Dr. S wanted us to come back when you hit 15 pounds, and we are finally there! He took a super quick look in your mouth today and was ready to schedule the surgery. I wasn’t as ready. I explained how you vomit daily, and can’t swallow or use your tongue to manipulate the fluid out of your mouth. There are many times when you throw up such large quantities that fluid is pushed up through your cleft palate and out your nose. I have come to think of that as a safety valve. You have never gotten sick from bacteria growing in there. Being in the soft palate rather than the hard, it doesn’t interfere with your suck/swallow, and it doesn’t seem you will be talking anytime in the immediate future. After hearing me out, Dr. S agreed that as of now, there is no reason we need to close it up. We are all completely comfortable with letting your hole stay as it is and save you a surgery. If anything changes and we decide it is necessary, the door is open and we can get it repaired quickly. This is great news!

Just Peachy

We have been working a teeny tiny bit on eating orally. Mainly just when Mrs. Tamara is here. So this morning we gave it another try, and this time you tasted Bubby’s peach flavored yogurt. Mrs. Tamara put a few dabs around your upper lip, and you managed to suck a bit off and swallow it down. After a couple tastes you started doing your usual coughing, gagging bit. We figured it was just because you didn’t want the yogurt in your mouth or because you were getting caught up on some mucus. After a few more minutes your cough started sounding very croupy. And that’s when it dawned on me. You were having an allergic reaction. Croup sounds the way it does because the airways become inflamed. I realized yours must be swelling. I grabbed you up, took you into your room and attached your pulse ox monitor. Your heart rate was almost 200 and your oxygen level was in the low 90’s/high 80’s. I looked you over a little closer and saw your lips were swelling also. Goodness.

Thankfully, we have the monitor so I knew exactly what your stats were and didn’t have to play guessing games on whether you were getting enough air. I have oxygen on hand, although we didn’t need it, and an epi-pen for last resort. They don’t make epi-pens for babies your size, so the one we have is too large of a dose. Still, if you ever aren’t breathing at all, we will take our chances with an overdose.

I am so sorry you had to go through that again. It doesn’t make eating seem super appealing, I am sure. I wish I knew everything you were allergic too. The strange part is that you haven’t ever had yogurt OR peaches before. In order to have that strong of a reaction, you usually need to have been exposed to the food previously. And it was such a miniscule “bite”. We will just have to practice eating with your formula from now on. It isn’t yummy, but at least it’s safe.

Audrey Skywalker

Somehow, I have gotten through my entire life without watching any of the Star Wars movies. Daddy decided he needed to remedy that. So we bought all six, and have watched them over the course of a couple weeks. I have to say, I really enjoyed them! But not nearly as much as you did. You laughed your entire way through both trilogies. The lightsabers, ship fights, droid, Wookie and Ewok sounds…these movies were made for you! I have a feeling it won’t be too long before Star Wars has an encore showing in the Bowers’ home theater!

Not a Ninja

I learned a new game called Ninja this summer, and it is one of my new faves. Basically it is a sophisticated hand slap game. Daddy and I were playing in the kitchen tonight, waiting for dinner to be ready and he got me. I screamed, only because I scream every time I lose—I don’t usually win, but still it catches me off guard. You were sitting at the table in your special chair, and out come the pouty lip and tears. Sweet girl. You thought Mommy got hurt and it scared you. It took a little while to soothe your hurt feelings. As tough as you are, you can be pretty sensitive. It just goes to show how aware you are though.

Getting Better All the Time

You have been doing so great lately in many areas!

*Socially. You are quite the talker. Especially at night and nap time when you don’t want to go to bed. Now, for example.
*Holding things. Tightly, and with both hands! While in your car seat, you are constantly grabbing the cord to your bag and shaking it around. You often grab your switches while sitting in your special chair and try bringing them to your mouth.
*In fact, you bring a lot of things to your mouth. And you allow Mrs. Tamara in there during your OT sessions without getting very defensive or gagging. A few weeks ago you even let us squirt some milk in your mouth and you worked hard to swallow it. That is incredible progress considering we haven’t been working on oral stim at all.
*Mobility. Still not rolling again. But you are managing to pivot in circles while lying on the floor.
*Visually. I can tell you are making more of an effort to get a good look at things, even if it means you have to hold your head in an uncomfortable position to do so.

I am not the only one that has noticed your improvement in these areas; others have mentioned to me how well they think you are doing. You are the super girl!

Shunt Success

So far your shunt is working like it should! The ventricles in your brain look about the same as they did last time we took a look, which is what we want. If everything goes well and we have no reason to suspect something is wrong, we won’t go back for another year.

As we loaded onto one of the elevators today, we saw and briefly spoke with Dr. K. It was a good reminder for me to schedule a follow up on the colostomy pull through. I can’t believe it has already been that long since we have seen him. Last September when he first told me that we didn’t need to come back for 12 months, it sounded so far away. And here we are, almost September again. It has been almost TWO years since the colostomy was reversed. Already I can barely remember those days of changing your colostomy bag. Unless someone asks me about your scar, it never even crosses my mind.

Unfortunately, hydrocephalus will always have to be at the back of my mind. 50% of shunts malfunction within the first two years of placement. Some symptoms are blurry vision, headaches, irritability, sleepiness, lethargy—none of these will be easy to spot on you. So I will need to keep a sharp eye out for regression in skills and a change in character. And when in doubt, check it out!

Cholesterol Lows

We got the results back on your cholesterol test. Good news is that your cholesterol has doubled! The bad news is that it is still lower than anyone would think possible. 7.7 mg/dl. None of your SLOS friends even have numbers that low. Strange thing is that your 7-DHC is also up a bit to 116. Here’s how it should work in layman’s terms, best that I can understand:

7-DHC is a basically a precursor to cholesterol. The normal range would be anywhere from .04 to .36 ug/mL. Too high a level of 7-DHC is toxic. A normal body gets rid of 7-DHC by using an enzyme to break it down into a usable form of cholesterol . So ideally, as the 7-DHC goes down, the cholesterol goes up and vice versa. In your body, however, the genes responsible for creating the enzyme to break down the 7-DHC are mutated. So those levels are very high for you – currently 116ug/mL. But this is up from last time we did labs. I don’t see how your cholesterol and 7-DHC went up together—there should be an inverse affect.

I really have to become aggressive about getting the specialists to look at you. The main issue is funding—there just isn’t enough of it to go around. But truly, you are a wonder child. I don’t even know how your body can function with a cholesterol number so low. It sheds light on why you are more than two years old and still not doing what a three month old can. Our doctors are fabulous, but none of them are very familiar with SLOS. So I emailed the specialists back in March, thinking they would love to get their hands on you and see how and why you are surviving. Only one responded. His study doesn’t seem like it would be super beneficial to you. However, it won’t hurt you at all either, so if that’s our only option, we will do it. But I am hoping the other two will show interest also. We just have to figure out why your numbers aren’t increasing. And since what we are doing now obviously isn’t working, we need to find a more efficient way of getting cholesterol into your system. Or even better, a way to give you the enzyme needed to break down 7-DHC. And I need to get started on your 3rd birthday fundraiser now, so that we can help contribute to finding these answers.

Bear Hugs

Today we had a routine CT scan to make sure your shunt is functioning properly. While in the waiting room, a lady came by and gave you a special bear pillow. She gave Bubby one also! It is so great that TCH has volunteers to love on kids like that. Even for you, the toughest girl ever, the machine that does CT’s and MRI’s is scary. I imagine older children who have an idea of what’s coming are most likely pretty anxious. A teddy bear to squeeze might be just the comfort they need.

Wheezy Breezy

Your brother is sick; he wheezes with every breath. And, perhaps typical of a big sister, you think it is hilarious.

Your laugh is so grown up these days! For such a tiny girl you give some mighty big and precious belly laughs! It is absolutely my most favorite sound in the world.

Kickin' It

To be in your stander, you have to wear shoes over your braces. And as thick as your braces are, you need shoes that are several sizes larger than your normal size. So here you are in Bubby's huge shoes. You are ADORABLE!

Kindness and Goodness

This week is the last children’s day-camp of the summer and we are talking about the fruit of the Spirit. Each day we talk about one or two, and today was kindness and goodness. I decided to use you in my devotion, so after my 4th and 5th grade class talked about what kindness and goodness was and a few examples, I went downstairs to get you.

I first came up with this idea last camp when my 2nd grade class met you. It was the day Honey stole you away for a bit, and when she dropped you off the rest of your class was walking around in the “bye-bye buggy”. So I said I would just hold on to you until they came back. I brought you out onto the playground where my kids were playing and within a couple of minutes, every single kid was crowded around you. At first it was just being a baby that attracted them. But soon it was because they realized you are a very special baby. A couple brave kids asked me some questions about you, and I always answer very receptively and honestly. When they saw that my feelings wouldn’t be hurt, a flood of questions came. We talked about why you can’t sit, walk, or talk, what the tube in your stomach is, why you don’t open your eyes, why you don’t close your mouth, why there is a hole in your mouth, why your teeth are so pointy, what cholesterol is and why Cheerios wouldn’t help you. But most of all we talked about how tough you are, how sweet you are, and how you love to laugh. The kids took turns using the Velcro on their shoes, zippers on their hoodies, and coming up with all new sounds you might think are funny. Before long our break time was over and we needed to go inside to practice the musical. Everyone said bye to you, and many of them walked away talking about how cute you are. As I dropped you off at the nursery, I couldn’t stop thinking about what a great experience that was for them.

I think a lot of times our “PC” culture prevents children from asking questions about people that are different. Some parents are quick to tell children not to stare or ask questions and basically teach kids to ignore those different people. But I feel like knowledge is the key to appreciating and understanding. I would never be offended by an honest question about you. You are absolutely beautiful, inside and out, but I know you don’t look or act the same as everyone else. It’s not like if someone were to ask me “why”, my eyes would suddenly be opened to your differences for the first time.

So today I thought it would be a good opportunity to introduce you to this class, especially since we have already had issues with respect and manners and kindness this week. Sure enough, the second I stepped into the classroom, one of my students said something inappropriate about you. My response was, “That is exactly what we are going to talk about today.” And I began to tell them your story.

Pretty Bird, Pretty Bird

The lights in your ceiling fan went out out several months ago, and all this time we have just been using a lamp on your changing table. Your room has a big window, but the direction it faces and the shrubs right outside mean you don't get a lot of direct sunlight. Good for napping, bad for seeing your new bedding that came in last week!




So this weekend we had a handyman come fix several things around the house, one of which was installing a new switch for your light. It's amazing how excited something so simple could make me. Afterward I took you on a tour to see what your room looks like. You love it.

TCH, Home, Repeat

Another trip to the hospital today. This time to see Dr. L. We are going to try another swallow study; it has been about a year since your last one and we are ready to start practicing oral feeds again. She also prescribed Miralax and Milk of Magnesium and a suppository weekly to see if that helps prevent your “episodes”. I am convinced they are related to bowel movements. We talked about a handful of other things, but I think that is the main points. You are 15.5 lbs, 27ish inches. Your blood pressure was awesome though! Everything else looks great. Keep up the good work, Babydoll!

Tough Suff

Matt from The Wheelchair Shop came to adjust your stander today. And guess what. He had to make it a tad larger! The minimum size for the stander is 27 inches. When we ordered it back in February, we had to factor in a thick soled shoe in order for you to be long enough. But since then you have grown, and the AFO’s and shoes give you more height than we anticipated. So he expanded the stander a bit and adjusted a couple more angles. Next week he will take about an inch and a half off the headrest to make it lower on your head and then it will be perfect!

We also went to the Med Center today. First we met with a doctor to go over your sleep study results. No surprise there. She said you slept fine. If you start having a few bad nights a week instead of a month, we need to figure out what is happening. Otherwise, she recommended we repeat the study in about a year.

The only abnormality was the amount of time you actually slept—eight hours. That is low for someone your age, but not for kiddos with SLOS. From what I hear, most of your friends sleep a lot less than that. In fact, 8 hours is probably impressive for you as well. I would guess that on average it more like six. From early on we talked about how even though you need only a little sleep, Daddy, Mommy and now Liam need more. So you have been very good about talking quietly in your bed whenever you wake up in the night, and let the rest of the family sleep. I can’t wait until you are able to entertain yourself, so that you won’t be bored crazy in there.

After our appointment, we headed downstairs for a blood draw to test your cholesterol. And you, the bravest girl in the world, did not even flinch when you got stuck. No pouty face, no tear, no nothing. I couldn’t be more proud.

Honey's Bunny

Today Honey came and picked you up from church to spend the day with you! What a special treat! Liam is lots of fun, and we are so happy to have him in our family. But the boy takes up a lot of time and attention. I know you were thrilled to have Honey all to yourself.

"Sick" Day

Well today we started another camp at church. I was planning on taking you and Liam to childcare, but you woke up feeling bad again this morning. Vomiting a lot, bad BMs, temp of 99.4 (feverish for you). I called Grammy to give her the heads up that you were sick, and asked if she would be willing to be on call to come get you if your condition worsened. She said she would and I continued packing everyone up. Five minutes later you felt very warm to me, and I took your temp again—101.4. So we called Grammy again and told her you couldn’t go to childcare. I dropped you off at her house, along with your pulse-ox, oxygen tank, plenty of Pedialyte and asked Grammy to call me if you got any worse. Around lunchtime she touched base…you were fine! Grammy said you had been happy and smiley all day, and hadn’t thrown up anymore. Very strange, but I am so glad you feel better! And I am so grateful we have grandparents who are willing to drop what they are doing in order to help take care of you! How blessed are we?

Rough Morning

This morning you woke up sick with one of your little episodes. I have some ideas of what could be causing this, and plan to talk with Dr. L at our next visit to explore those ideas. But today you and I needed to stay home from church. Towards evening you seemed to be feeling better. I am so glad these spells don’t last long!

Brotherly Love

At dinner you and Liam sat next to each other and held hands. At least until Liam found your skirt and thought it was a toy. I love to watch the two of you interact. He is going to be your best buddy.

Standing Tall

Today we got your AFO’s (ankle braces) so you are able to be in your stander. The doctor doesn’t think you need to be in them all day every day since your feet aren’t spastic or tight. The tech thinks it is a good idea in order to keep your feet from getting tight. I figure we will see how you tolerate them. If you don’t mind, then we might as well wear them. But if your skin breaks down or they make you super uncomfortable, we will only wear them in the stander for now.

The AFO’s are pretty cute and tiny. You LOVE the Velcro straps. You laugh and laugh when it is time to put them on or take them off.

Here you are, standing in your braces for the first time. It is unbelievable how long you look all stretched out. This is going to be so good for you!

Dancing Queen

This evening you, Daddy and I had a boogie session in the kitchen. We played the iPod and put the wheels on your chair to good use. We twirled you in circles, shoved your chair across the room to one another, rocked you back and forth. We clapped and snapped and helped you move your arms to the beat. You loved it. We loved it. Until Daddy got a head butt and was down for the count. One of us was bound to get hurt—that’s how most our fun ends. We just get too excited and silly and (apparently) uncoordinated. At least we laugh through the pain.

Improvements

Your special chair is awesome, and we are so grateful it allows you to be upright and supported. One drawback however, is that there is no place to put your feeding pump. So the challenge is maneuvering your chair and your IV pole at the same time. Both have wheels, but both get a little squirrely and want to go their own ways, especially on the carpet. So I asked The Wheelchair Shop (who ordered the chair and does the modifications) if there was an attachment. They looked into it and told me there was, but it wouldn’t be fully funded by Medicaid. The WC Shop would have to order the pole at a cost of $400 (which is absolutely outrageous to me) and Medicaid would only cover $100 (much more reasonable). But that would leave the Wheelchair Shop with a $300 loss on their end. So I resigned myself to either paying for it out of pocket or making it work as is. I chose to make it work for now.

Well today, Matt from The WC Shop came over with a pole and attached it to your chair! I am still not sure how they got it funded, but apparently they kept at it and were successful. I am so appreciative that they didn’t easily give up. Unfortunately, it isn’t often I find a company or organization that goes that extra mile for kids like you. Logic would lead one to think that people who work with special needs kids would have a heart for them, and a desire to help them as much as possible as quickly as possible. It just isn’t so. Much more often the people we deal with are cranky, slow and incompetent. This experience was so refreshing. It isn’t a huge deal for us to have this pole. We could have survived without it. But it simplifies our life just a bit, and I am so thrilled to be blessed with it!

Along the same lines, I received a letter today from the DADS office stating we have been given a new caseworker for the MDCP program. I cannot express how relieved I am by this news. Our former caseworker was just plain ugly. She was the one I caught in a number of lies so that she wouldn’t have to help us. She was the one who held onto our application for an extra 60 days which caused us to pay for 2 major surgeries out of pocket. She was the one who I would call and call and call again over the course of several weeks, and when she finally returned my messages her standard line was, “Look, your kid isn’t the only kid in Houston with problems” with as much attitude as she could muster. She was the one who made me so angry over the phone once, that I was literally shaking and when I hung up to call Daddy, I burst into tears. She was the one I eventually refused to speak with and so Daddy had to do all the dirty work. My understanding was that she was hired to be our advocate. She was much more an adversary. I asked on multiple occasions to be assigned a new case manager, but was told the assignments were by zip code and nothing could be done. This was one benefit in moving for us! It is still on my “to-do” list to write a letter to her supervisor, outlining the issues we have had with her. I never got around to it which is a shame; I am sure she treated all her other cases the same way she did us. And my guess would be those other families have about the same amount of time to dedicate to those tasks as I do. I just have to pick priorities. If the choice is between spending time with you, Daddy, Liam, updating your blog, getting bills paid, making dinner, scheduling doctor appointments and filling scrips or sitting down to write a complaint letter, I have to choose the former.

I am so excited to find out we have someone new. I am praying that she is more pleasant and knowledgeable, and that this attitude isn’t the corporate culture there. I have spoken with two other ladies in the same office—one was very kind and helpful. The other was more like our case manager. But whoever it is, she must be an improvement.

Sleep Study

Tonight you and Daddy are at the hospital where you are having a sleep study done. Basically, they will hook up an EEG, oxygen and heart rate monitors and video you sleeping all night. We originally had ordered this back in October when you were desating through the night often. But of course, as our timing so often goes, you haven’t had any issues in the last couple weeks. So while I don’t anticipate you doing anything interesting, I hope that something positive results from this.

Liam and I helped you and Daddy get settled, then headed back towards the car. As soon as we both were buckled in, I got this text from Daddy.

“Boo and Sue miss Roo and Two!”

These are our nicknames…I can’t remember if I explained to you how those came about, but I know I told Brother. Click HERE to read that post.

We miss y’all too. It is strange being home without you and not pulling meds, getting milk ready, listening for any signs of throwing up. I got some sweet goodnight kisses and smiles before I left, but it isn’t the same as right before lights out. But I am confident everyone will sleep well tonight. It was lights out at the hospital by 8:00pm. Daddy was looking forward to such an early bedtime. That’s a bad sign when you need to go to the hospital for a good night’s rest.

Off to bed for Mama. I love you and Daddy, and Bubba and I will be there early tomorrow to pick you up and take you both to breakfast!

Flower Power

Today we went to Sam’s to stock up on baby supplies. As we were checking out, a very cool looking older man was next to us in line. He was dressed like he was in his 20’s and as friendly as could be. He dropped a bouquet of roses while unloading his cart, and Daddy bent to pick them up. The following dialogue went something like this:

Man: (teasing) For me? (looking at me) Isn’t he sweet?
Me: (joking) Well, it would be sweeter if he was offering them to me!
Man: (to Daddy) Yes, why aren’t you buying her flowers?
Me: Because he is buying me a cart full of diapers and I would rather have those anyway.

You and Liam caught his attention and he flirted with the two of you a bit. We talked a tiny bit more, mainly about you. When Daddy finished checking out, we said goodbye and headed outside. It takes us what seems like forever to do just about anything, and as we were finishing loading you guys up, he walked up and slipped a bouquet of white roses into our empty stroller. He gave a tiny wave and walked off in the opposite direction. How amazingly sweet was that? I think you must have won him over.

I thought about that gesture for the rest of the day. God has grown in me a heart for generosity over the past year or so. But that was just a reminder of how simple it is to love on a complete stranger. It made my day, not because of the flowers, but just because of his kind heart. He must love Jesus. It renews my desire to find ways to give more abundantly, more freely, and more spontaneously.

(I wish I had taken a picture of the roses. I only have this one because Daddy is trying to find a new home for the kitties, and I guess he thought the flowers would increase Misty's chances of being adopted.)

That's gonna leave a mark...

Well the indentions are still there. And now they have scabbed up also. I began to worry we had permanantly scarred you, so today I tried to find information online. After a lot of searching, I came across an info sheet for patients about to undergo ambulatory EEG’s by a hospital in Philadelphia. Apparently the scabs are from blisters that pop up thanks to a lack of air touching the scalp for those 48 hours. And according to them, it may take up to two weeks for these marks to go away, depending on the thinness, sensitivity and elasticity of the skin. I expect yours to last at least two weeks. You, my sweet baby, do everything a bit slower than most. Which is ok with me. Take your time.

Ambulatory EEG

You went in to have an ambulatory EEG done this week. The goal was to catch you doing a “freak-out” so we could see exactly what is going on in your brain during them. So we went in Tuesday morning and began the normal EEG process. After all the electrodes were firmly attached to your scalp, the wires were plugged into a machine pack. This pack was larger than an older style flip phone and was placed on top of your head. All of this was wrapped securely in gauze around your head and under your chin. From the back of the machine came a thick black cord about two feet long, which plugged into another machine, this one larger than the first. This box was to be carried around with you the entire 48 hours.

This is certainly uncomfortable for everybody, but for you especially it was difficult. You have enough issues supporting your own head, but the added weight and balance of the machine really threw you off. I thought we wouldn’t have any problems carrying the box around since we are so used to doing the same with the feeding pump. But the pump gives us about 4 feet leash instead of half that, and it was very tricky trying to keep up with both at the same time. With a cord coming out of your head and another from your tummy, I felt like I was doing a juggling act for two days.
Probably as a blessing in disguise, you became sick Tuesday night. Actually you and I both became sick. Which is very strange since neither of us is ever sick. Except this week. Our throats hurt, we were exhausted and congested and had problems breathing. So Wednesday morning when I woke up feeling terrible, I asked Daddy to stay home. I expected you would need extra attention, not only because you were sick but also from being upset about the box on your head. If it was just you and I, I probably could have managed. We could have stayed in bed and snuggled and rested. But I knew there wasn’t any way I could take care of Liam (who doesn’t slow down for anything) and you while you felt the way you did, and while I felt the way I did.

Daddy sweetly stayed and I slept. When I woke up you were still sleeping. A couple hours later you were still sleeping. You slept until 12:30p which is not like you at all. When you finally woke up, you only lasted a short while before falling back asleep for a nap. I wanted you to feel well, but it was probably for the best that you slept through so much of the EEG. Of course it wasn’t an accurate sampling of a normal day for you and you didn’t do the freak out even once. But without that sleep, I think you would have been miserable.

This morning we headed back to the med center to remove the devices. You and I felt so much better. Our illnesses followed the same timeline, and it was great for me to know exactly how you felt for once—no guess work needed. When everything was taken off, you were left with red indentions on your forehead, and I am sure all over your scalp. I was told by the tech that they would pop back out in a half hour or so. As of now, they are still very visible. I sure hope she is right!

I will have to call the hospital early next week for the results. I hope they got what they needed, because we will not be going through this experience again anytime soon! I love you my tough, tough girl!

Setting You Straight

Today we went to get fitted for your foot braces. The technician who made your plaster molds warned me that the procedure was uncomfortable and that I should expect you to fuss. I told him I expected you to pleasantly surprise him. And sure enough, you proved me right. Not one little whine out of you throughout the entire process. You are such a brave girl!

I was given a book of patterns and told to pick out a print and strap color. I chose (no shock here) a plain pink mold with pink straps. When the tech told me the straps were “nuclear”, as in super blindingly bright, I was flippant, saying you would only wear them in your stander. He was under the impression you would need to wear them all day, every day. I am going to call Dr. W to see if that is the case, but I am hoping you will pleasantly surprise him again. You have too many cute shoes to wear! Just in case we changed the straps to a soft lilac color.

The braces should be ready in two weeks.

Sleeping Beauty

Look how cute you are in your big girl bed. I'll let you in on a secret though. You don't actually sleep in your bed the way you are in this photo. In fact, you look nothing like this. We fold down the blankets and put you in the middle of the bed on your side on top of a burp rag and blocked in by pillows. We have your suction machine nearby on one side, your feeding pump on the other, your foot hooked up to the pulse ox, mittens on, Lambie in the crook of your arm, recieving blanket draped over you. This is more accurate...

I am not sure this is the bedding we will keep. Originally I had decided on the Sparrow Lilac set, however it is a duvet instead of comforter. I would prefer a bedspread since I do make your bed each morning, and I think it would be much easier than trying to fluff the down comforter inside the duvet. But I think this sparrow bedding is precious! And it goes with the colors already in your room perfectly.

Blog Picture - 2 Years Old

Every year when you have a birthday, I update your blog header with a new photo of you and Lambie. In the past, you have always been sleeping in the picture, and I was trying to stage it to be the same for this year. But you kept rolling back, looking at the camera, smiling, talking. I thought about waiting until you were actually asleep, and then I realized, how silly! That is what is so fabulous about the blog! I can look back and see your progression from year to year--even day to day. And this year, you are a big girl who can be charming and engaging.

Terrific Two!

My big girl is TWO! We decided not to do a party this year. In fact, we hardly even did a family party. This week we are having problems with our A/C, so everyday we leave early in the morning and don't come home until late at night. But no matter. You didn’t know the difference and had a fun day regardless.


This morning you woke up laughing hysterically. I am convinced Jesus was telling you a silly birthday joke. I just sat and listened to you giggle over the monitor for several minutes before I came to join in on the fun. Later today we went to church to decorate for VBS. Honey showed up with these huge balloons for you! You are half the size of one flip-flop! Both you and Brother love them. Some other great gifts you were given from your family were a cute dress with stylish sandals, a beautiful bracelet, a Veggie Tales movie, a new changing pad (after two years yours was smooshed hard as a rock), your bedding, and two new things you can use with your adaptive switch. One is a jungle toy that spins and laughs when you press your button. The other is a desk fan that softly blows on you. You think both are hilarious.

Celebration

Ugh.

What am I going to do about your birthday party? I have always said that any birthday you have deserves a huge celebration. I know our years with you may be limited—which I realize is dumb because none of us are guaranteed tomorrow. But I am more acutely aware of it with you. So I want to go all out every year. But for the “Big Oh-2” as Daddy calls it, I have not done anything. All of my resources—time, money, creativity—are low. Part of me thinks we should just do a small family party. You won’t know the difference either way, so what’s the point? And then I think, the point is for me! And everyone who loves you! I was thrilled with the way your first birthday turned out, and the memories from that afternoon are so sweet. I think you deserve to be showered with attention and love one day a year. Plus, what if something happens this year and this birthday is your last? I will regret that out of your two birthdays, we only celebrated half.

I have a vision that I have fully fleshed out in my head, but have yet to put into action. I want to have an annual fundraiser for your birthday, in a carnival setting. We would build awareness for SLOS and have a blast at the same time. We would have moonwalks, games, petting zoos, small rides, cotton candy, popcorn, shaved ice, maybe a silent auction or raffle. Instead of gifts, people could donate money. Originally I thought all proceeds would go to the SLOS foundation, and maybe they still will. But then I thought how cool would it be to bless one special needs family—SLO or not—with a huge gift to help pay for medical bills, supplies, nurses, meds, renovations to make their home handicap accessible, whatever! We are so fortunate for our Medicaid. Without it we just could not make ends meet. A long time ago I did the math, and without any surgeries, procedures, or hospital stays, you cost at least $5,000 monthly. Not everyone knows about MDCP, and not all states are as generous as Texas. In fact, most other states give way less help or none at all. I have no idea how those families do it. I know God provides for them as he does for us, but I would love to be his hands and feet in this way.

Right now you wouldn’t think much of it, but my prayer is that one day you will be walking and talking, and when you are, your birthday bash will be waiting for you. And if we never got to that point, this annual celebration would be a wonderful way to honor you by helping others.

I think fear is what has kept me from pursuing this vision. I can see it in my mind, and it is huge and successful and fun. I am confident eventually we will get there, but it will take me a long time to build up the sponsors and donations to achieve my dream. I know that the reality won’t match my imagination for years to come. And it is the meantime I am afraid of. My party throwing confidence is minimal, and even though it may not be all I hope it will become, I still want everyone to have a good time while making money for a good cause. In fact, I had originally wanted to do this for your first birthday, but ran out of time. My plan was to start early in 2010 for your second birthday in June. But here we are. June. I procrastinate. And hem and haw. And wrestle over what I should do just two days before your birthday.

Maybe for the “Big Oh-3”.

Ugh.