Thursday, December 30, 2010
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.
Wednesday, December 29, 2010
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]".)
Friday, December 24, 2010
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.
Thursday, December 23, 2010
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.
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.
Tuesday, December 21, 2010
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!
Sunday, December 19, 2010
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!
Saturday, December 18, 2010
Friday, December 17, 2010
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.
Monday, December 13, 2010
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.”
Sunday, December 12, 2010
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.
Thursday, December 9, 2010
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.
Tuesday, November 30, 2010
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.
Thursday, November 25, 2010
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.
Friday, November 19, 2010
Tuesday, November 16, 2010
Monday, November 15, 2010
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.
Wednesday, November 10, 2010
Monday, November 8, 2010
Thursday, November 4, 2010
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.
Monday, November 1, 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!)
Friday, October 29, 2010
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.
Thursday, October 28, 2010
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.
Yep, saw that one coming.
Well, we got a good one of the two of us. :-)
Wednesday, October 27, 2010
Tuesday, October 26, 2010
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!
Sunday, October 24, 2010
Friday, October 22, 2010
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.
Thursday, October 14, 2010
Tuesday, October 12, 2010
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.
Monday, October 11, 2010
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!
Thursday, October 7, 2010
Thursday, September 30, 2010
Sunday, September 26, 2010
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!
Monday, September 20, 2010
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?
Saturday, September 18, 2010
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…
Thursday, September 16, 2010
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!
Wednesday, September 15, 2010
Tuesday, September 14, 2010
Monday, September 13, 2010
Thursday, September 9, 2010
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.
Tuesday, September 7, 2010
Wednesday, August 25, 2010
Monday, August 23, 2010
*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!
Tuesday, August 17, 2010
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!
Friday, August 13, 2010
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.
Thursday, August 12, 2010
Monday, August 9, 2010
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.
Sunday, August 8, 2010
Thursday, August 5, 2010
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.
Monday, August 2, 2010
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.
Thursday, July 29, 2010
Wednesday, July 28, 2010
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.
Wednesday, July 21, 2010
Monday, July 19, 2010
Sunday, July 18, 2010
Saturday, July 17, 2010
Friday, July 16, 2010
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!
Friday, July 9, 2010
Thursday, July 8, 2010
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.
Tuesday, June 29, 2010
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!
Sunday, June 27, 2010
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.
Saturday, June 26, 2010
Thursday, June 24, 2010
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!
Wednesday, June 16, 2010
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.
Monday, June 14, 2010
Thursday, June 10, 2010
Wednesday, June 9, 2010
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.
Monday, June 7, 2010
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”.
Sunday, June 6, 2010
Friday, June 4, 2010
Thursday, June 3, 2010
Here you are in your new stander! It arrived a couple weeks ago, but because we don’t yet have AFO’s (foot braces) you aren’t well supported enough to stand in it for very long. A few minutes here and there are fine to help get you accustomed to it, just so long that it stays in a partially reclined position. June 16th we have the appointment to be fitted for the AFO’s, and then nothing can hold us back!
I am blown away by how tall you are in this stander. When your tiny little self is curled up in my arms, helpless and fully dependent on me, it is easy to think of you as a baby. But every once in awhile, you stretch out just right, giggle so sweetly, or have a glint of understanding in your eyes that stuns me into realizing you aren’t a baby. You will be two next week. TWO!
I can remember this day two years ago perfectly. It was Grammy’s birthday and I was at Starbuck’s buying packages of her favorite teas. The young man who rang me up reached over the counter to rub my belly (yup, really) asked me when I was due. He was shocked by my simple reply of, “yesterday”. He didn’t know any better. “What are you doing out and about? Shouldn’t you be home in bed or at the hospital?” Good thing I didn’t take his advice. I would be bored crazy for the next 6 days until we induced.
This week will be an emotional one for me, just as it was last year. The memories are so fresh still, and as I have learned from other SLOS parents, probably always will be. And I wouldn’t have it any other way. Good or bad, I don’t want to forget a thing about any of our time together.