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
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:
Here are both girls on Easter last week: