Monday, September 9, 2013

To my Scarlette, with love on your 4th birthday

Dear Scarlette~

Holy moly! You are four today! That is almost unbelievable to me! I still remember so vividly the day (night) I found out I was pregnant with you and how excited we were! The day you were born (and how scared we were). The day we got to hold you and how PERFECT you were. And are. You are perfect! Do you know that? When God made you he decided to make you really special! He decided that you got to be MORE than just the rest of us! He decided that He was going to use you to teach us SO many new, scary and WONDERFUL things.Because of You I have learned to value life, I have learned to appreciate the MIRACLE of the small things, I have learned patience, oh boy has that been a hard one. Patient is one thing your mommy is not! But I'm learning! I have learned to laugh at death, literally to find humor in things others would cower at. I have learned so much about faith, and what it means to truly and totally put my trust in God. I have learned not to sweat the small stuff and also not to take things for granted! I have learned to give others grace, because we never know what trials they are facing. I have learned that what we think we deserve we don't, and just because our life is different from what we thought it should be doesn't mean it is worse or less fulfilling. Look at all you have taught me in these four years. And I'm still learning! You have SO much to teach us that I may not have learned if God didn't give you to us. If He didn't trust us to care for you. Sometimes I question His intent, sometimes I don't feel up to the challenge and I feel like I'm failing you. But I know God's plan is PERFECT so I know that you are with us for a reason. I feel honored. He definitely thinks more highly of me than I do.

In all that you have taught me you have learned some things too! In the last year we have had some setbacks, but we have also had some MAJOR milestones! You started standing up while holding our hands for small amounts of time, and most recently you started being able to hold yourself for a second before you fell. You have learned somewhat clumsily how to get yourself off the couch. You allow your sister to play with and on you and you do it with a smile. You have recently started babbling much more and even vocalizing new sounds. You went through a very hormonal phase about six months ago where everything and anything that you didn't want to have anything to do with made you cry (that one was fun let me tell you!). And you re-started therapy which you have been doing great at, even if you vocally protest every time you have to change positions!

You also have some new loves this year. You LOVE and I mean love bordering on loving more than mommy Sofia the 1st. The only time you and sissy are quiet in the morning is when mommy turns it on (and praises Jesus while doing so ;0) ). You really love Auntie KC's doggie Komo, and have been so interested in all the other doggies you have met and seen this year. I hope one day we can get you a hypoallergenic companion dog. I truly never thought you would take to animals the way you have! You love your sissy, we can tell you really do! You watch her and you let her play with you, and you are almost never mad at her. Except when she blocks the TV. You LOVE music and you LOVE the ladies at church who sit with you and play music the entire time you are in Sunday school. They have no idea how much peace they bring to mommy and daddy for that hour knowing that you are safe and happy.

Baby girl, I would have never chosen this life for you, but I would be wrong. You are doing exactly what you were put on this earth to do. You have reached so many people. Your joy is felt by anyone who's around you when you smile. Your heart is so pure and you are just so special and so wonderful. You have accomplished more in 4 years than I have in 27 and I hope I can be more like you when I grow up.

Love, Mommy

Sunday, August 18, 2013

2 year Heart-a-versary!

Two years ago today Scarlette had her most pivotal surgery, her open heart surgery. To some it may seem silly but today is a very special day to me! Two years ago today was a turning point in Scarlette's health, in her life! Scarlette was only 17 pounds when she had her heart surgery. The cardiologist followed her for two years, hoping that she would grow and get bigger. Stronger. Because a bigger stronger child does better in heart surgery. But Scarlette couldn't grow. Because of the whole in her heart, her atrioseptal defect, her heart was working overtime just to pump enough blood to all of her organs and extremities. She was burning more calories than she could possibly consume. So with some trepidation they scheduled her heart surgery. She was 23 months and 17 lbs...not even on the growth chart, but they had no choice. The surgery went perfectly, as perfectly as surgery can go. It was quicker than expected, and there were a few hiccups while in ICU but she was moved to the Heart and Kidney unit the day after surgery and on Sunday morning, just THREE days after her surgery, we went home. The doctors told us to anticipate being at the hospital for a week at least, maybe more due to how fragile she was. I have never seen her bounce back so fast from a surgery before. This was clearly the work of God. Now, 2 years later she is SO much stronger, SO much healthier! She's not petite any more! She's a healthy chunky rolly little thing! 30 lbs and 35". Still small for an almost 4 year old, but barely! After her surgery she started sitting up with much more balance, she started tolerating bearing weight through her legs and arms and hands. She tolerated being put in the gait trainer and stander. She allowed us to help her stand on her feet. She has gotten so much stronger and if it wasn't for her heart surgery I don't know where she would be today.

I thank God for modern medicine. I thank God for the men and women who find their calling in physical healing. Surgeons, cardiologists, nurses, therapists, technicians. People who are passionate about healing people. People who are passionate about science and understanding how the body works (and doesn't work). Prayer is powerful and wonderful and miraculous. But sometimes God can answer prayers in a conventional way and it still be wonderful and miraculous! I have witnessed so many miracles through Scarlette and I'm blessed to know I'm going to witness many more. God has poured favor over our lives by allowing us to care for this tiny human and even when it's hard and I feel like a failure I try to stop and remember how much God loves us, and how often He has showed us that He is watching over Scarlette and the rest of us.

So happy 2nd Heart-a-versary baby girl, and I pray for many many more!

If any of you want to reminisce about that day like I did, here's the link to the blog post from that day!

Sunday, June 30, 2013

My Little Chatterbox!

Everyone always asks me: What words does Savannah say? Usually I can't think of them off the top of my head so I figured I should write them all down because there really are a lot! She babbles in her own language CONSTANTLY! She will carry on a full conversation with you, full of gestures and different intonations. As well as changing which words she says. It's absolutely hilarious and SO entertaining! Here is a run-down of the "real" words she uses most:

Okay (her absolute by far favorite word) She responds to almost everything with "okay"
hello (e-llo)
three (if we count out one...two...three....every single one is three lol)
thank you (it's not exactly understandable but she uses it any time I say, "say thank you!" and she says it the same every time)
love you (lolo oo)
sissy (every morning she says hi sissy! to scarlette) this is what she calls scarlette and it's so cute
woof woof (what she calls a doggy)
tweet tweet (teet teet)
wassat? (what's that?) we hear this one a lot!
and when we tell her something is hot she blows on it! SO  cute!

She just recently learned the signs for please and sorry, so she now knows more, all done, milk, eat, please and sorry! We are working on the signs for share, thank you and horse right now! I love communicating with this little girl, I'm sure I forgot some but I think for 19 months old she's doing great!

Thursday, May 9, 2013

My baby is 18 months old today!

Oh this is just so bittersweet! I've been dreading this day, largely because it's just one more affirmation that my sweet little baby is transforming into a little girl right before our eyes! She's such a delight, and so much fun, that I just want to freeze her in time and keep her just the way she is forever!

We haven't yet had her 18 month appt but she's about 23 lbs and 30" tall. She wears a size 4 shoe, and has 14 of her 20 baby teeth! Her hair is getting much longer and curlier! The biggest new development with Savvy is over the past week she has started sleeping through the night completely and has weaned herself from nursing! She hasn't nursed in over 4 days so I would say she's done with her "num-num". :0)

Savvy has learned SO much recently! Her new words are: bow, walk, touchdown, pretty, ready, three (teee). She has a baby cinderella that she will bring to you if you ask her "where's your baby?" She rocks her, and pats her head. It's the SWEETEST thing! She is so affectionate, even with perfect strangers. We constantly have to watch her at the park because she will go up to random people and hug them, try to hold their hand or pet them (lol). She has recently started feeding herself with a spoon and also tries very hard to use a fork. She brings us books to "read" to her, but really she just wants to turn the pages super fast and look at all the pictures with you. She is the sweetest, most loving, most obstinate little girl that I have ever met, and I am SO glad God blessed me with her!

Happy half birthday my little Savannah Faythe, we are SO PROUD OF YOU!!!!

Wednesday, April 24, 2013


One of the reasons I haven't updated in so long is I'm not even sure quite how to make this succinct. There is so much that goes on with Scarlette "behind the scenes" so to speak, it's so much easier to just post daily pictures of her smiling and go on about our lives. But there are some big things coming up so I thought I'd take some time to both re-cap and update on what's going to happen in the near future.

For those who have just started following Scarlette's story recently, let me try to catch you up in one paragraph (HAHAHAHAHA). Scarlette was born with a chromosomal deletion which caused a multitude of congenital birth defects. She was born with a whole in her diaphragm, 3 holes in her heart, a cleft palate (hole in the roof of her mouth), kidney reflux, low muscle tone, significant hearing loss, severe food allergies and mental defect. And that's just what we know so far. She has had 7 surgeries to date, 3 sets of ear tubes, repair on her heart, diaphragm and palate, tonsils and adenoids removed and a g-tube placed in her belly. A g-tube is a little tube that looks like the inflation port on a raft that hooks up to Scarlette and connects to a bag filled with formula. This is Scarlette's only way of eating currently, as she has such low muscle tone in her esophagus she has trouble swallowing, and has no desire to eat orally. All of Scarlette's conditions stem from her chromosomal anomaly, which is something that occurred spontaneously during conception and was not inherited. She has had years of physical, occupational and speech therapy, and is seen by about 15 various specialists through the military and civilian hospitals locally.

Ok, now that you are caught up on her history I'm going to update on what's going on currently. 2 months ago we moved from Washington, D.C. to San Diego, CA. While we were very excited to move home I was very nervous to leave our medical "family" behind. We knew we would have to re-establish all of her care here and even with all my worry I don't think I could have ever been prepared for how much work it would be. I hope to never have to do it again. In the last 5 weeks we have had 13 appts and a sleep study. We currently have 6 appts scheduled for the next 3 weeks, and are slated for another sleep study and an OR trip for 5 different specialists to do different procedures. So if you see me, and I seem a little cuckoo now you know why!!!! ;0)

Scarlette has recently been diagnosed with sleep apnea, which we always suspected she had due to her poor sleep habits, but is now confirmed. She's going to have a sleep study done in which they hook her up to a CPAP machine to calibrate exactly how much pressure she needs and then they she will end up having to use CPAP nightly. We are nervous that she's going to resist initially, but are confident that ultimately this will help her get the rest she needs.

Another somewhat new diagnosis is her hearing. In September we learned that she had completely lost all of her hearing in her right ear (previously it was just a moderate hearing loss). The ENT doctors have encouraged us to look into the cochlear implant surgery to see if that may be something we want for Scarlette. We are still on the fence with this procedure, largely because the outcome could possibly not help her at all, but we are going to be going to a clinic at Rady's Childrens Hospital for an evaluation to see if she's a good candidate for it. We will meet with CI team and they will evaluate whether they think CI is definitely right for her or whether the procedure is too risky in her slightly complicated and more fragile state.

Scarlette has had an issue with excessive saliva production for just about the last year. Now, this may seem trivial compared to everything else, but to a mom who just wants her child to look normal, this is huge. Vain as it may be, her drooling has really been an issue for me. It's just another reason for people to judge, ask questions or assume things about us and that's really hard for me. But I also won't put Scarlette on medication with side effects just because she has a bodily function she can't control. SO on that note, the ENT doctor had some great news for me today! They can give her a tiny botox injection in her parotid glands that "freezes" the glands so that they stop producing so much saliva. Because she doesn't eat by mouth it's not necessary for her to produce as much saliva as she does and the dr. is confident that this is a somewhat easy fix, although it does wear off so it will have to be re-administered. The first time will be more of a trial just to make sure she has no adverse reaction and then in 3 months it will be done again. If her drooling somehow gets worse or the botox doesn't work, then we will discuss removing her parotid salivary glands completely during one of her other procedures.

Physically, Scarlette is doing okay, although she hasn't seemed to progress for awhile. She is allowing us to help her stand with our assistance which is GREAT! But unfortunately we are having a very hard time getting plugged in with her therapies. I need to get her a new IEP and that can't be done until she's evaluated by the therapists at Balboa. It's been a long process and continues to be challenging but it will get done eventually! I am nervous about sending her to school and I am SO not ready for her to be away from me every day!

I believe that every single person has struggles. Everybody faces hardships, and everyone has their cross to bear. I have met so many people who have been through things I personally don't think I could ever handle. But I have also learned that when faced with no other choice people overcome.  I KNOW that God chose this hardship for us because He knew there were other things that would have been too much for us to bear. I am not special, I am not this amazingly patient parent who should win awards. I get angry, I get upset and frustrated and pissed off at what I think is unfair for my child. Please don't give me more credit than I deserve. Their are days where I absolutely think I just can't handle it anymore. But I can and I do because what other choice is there? I know that without relying on my faith with God I would probably have lost hope long ago. Most days though, I feel SO blessed that I get to grow with Scarlette. She is the sweetest, most loving child I have had the privilege to meet and her happiness is infectious! It may not always be easy, but it's ALWAYS rewarding!

Monday, April 8, 2013

17 months....WHAT?!?!?

How is it possible that last month my big princess turned 3 1/2 and now we are only 1 month and 1 day shy of little miss turning 1 1/2!?? Slow down girls! Scarlette had a HUGE growth spurt and is now 34.5" tall and 27 lbs. Savvy is still hanging out at 22 lbs and I'm not sure how tall she is, but I'd venture to guess she's right about 30". She won't stay still long enough for me to measure her! Scarlette is doing very well as we are getting her plugged in to Balboa and meeting with a myriad of specialists. She has a lot of upcoming procedures/appointments but so far nothing too worrisome. Savannah is just a little spitfire! She runs, not walks, everywhere! She gets into everything she shouldn't and she learns new things every day! She's also a little mimic! If you put your hands on your hips or point your finger at her, she does it right back at you without missing a beat! I'm definitely going to have my hands full when she expands her vocabulary! We are loving sunny San Diego, and can't wait for it to get just a touch warmer!

Here are both girls on Easter last week:

Wednesday, January 9, 2013

14 months!

AHHHHHHHHH my little baby is 14 months old! It just goes by too fast!!!! She is the sweetest, most loving little girl and is a total sponge when it comes to learning new things! I haven't had her stats checked recently but she's about 21 lbs and 29" tall. Her biggest accomplishment this month: WALKING! She took her first steps the day after Christmas, learned how to stand up on her own on Dec 30, and is now walking about 50% of the time! She is now talking up a storm (unintelligibly) and doing a little bit of singing/humming as well. She has gotten 3 of her 1 year molars and now has 11 teeth. Love my sweet cutie patootie!