18 Month Check Up (a little late!)

Callista had her 18 month check up today. She is 29" long now, and weighs almost 22lbs. I am happy to say she has grown! I was a little worried about her weight, since she had such a rough time after her surgery and has been consistently puking for quite awhile. Apparently it isn't having an effect on her gain! She actually talked to our pediatrician today for the first time, even though she's been babbling for months. Annnnnnnnd....we finally got a prescription for HKAFOs (Hip, Knee, Ankle, Foot orthotics). Maybe we can finally get this baby practicing her standing. Our stander is still in process, but we made some progress with billing this week: one step closer!

Standers help our little ones stay upright, encouraging bone growth, better circulation, healthier digestion, and of course, it helps them finally see the world the way everyone else sees it! I am looking froward to her being able to be at a higher eye level and interact more. It will come with a tray so we will be able to sit toys in front of her.

Next Friday, Callista will go to Myelo clinic. This will be the first one I have ever missed. I am sad, but daddy will be able to handle it (with the help of our nurse, everybody needs food and a bathroom break at some point!). I hope they see the massive amount of progress that we see after her decompression surgery. Sure, she is no where near where she would be if she was a typical child, but the girl feels better and that is what matters.

We still have no news from our Homecare Waiver reassessment, so for now we are going with "no news is good news". Our documentation shows her need, now we just need to get the approval. Keep praying!

As for mommy, the new job is going well. I like being able to be home with Callista a lot sooner and the financial aspects have been a blessing for us. A change in insurance *should* make the world of a difference, but we won't see the change for another few weeks. I really had forgotten how awesome it is to work with children directly. It's certainly a lesson to be that all you have to do is trust and ask, and God will give you what you need. Even if it takes his sweet, sweet time doing so. :)

I will update after clinic next week. No MRI (as far as we know!), but she does have a renal ultrasound. They've been stable for a year, we aren't expecting anything new from this. We are getting samples of a blended diet formula though! Plan #987 in Operation: End Vomit!!

Move It Move It!

Our little princess is one tough cookie! I cannot imagine how she felt before decompression #2. The progress we have seen has been amazing. There's not really any other word for it. Even though she does not get another MRI until December, I already know what it's going to say in my heart. I know the syrinx is either gone or shrunk significantly. We have a NEW KID. As I write this, she is sitting in her bouncy chair pressing away on her musical flowers. Most parents would be ready to smash the thing by now, but hearing that sound (albeit annoying as it is!) means so much to me. Because a month ago she could have cared less. She didn;t want to play with toys, she didn't move her arms. Yet here she sits, twirling the flowers, making them go, and entertaining herself for the first time in her life. She is trying her hardest to sit up even though she still has another week to go before she's allowed. And best of all, we see leg movement all the time. Coming from little to no movement to frequent kicks and wiggles pretty much makes me cry. No lie there. I had almost resigned myself to the fact that my daughter would never walk, even a little. It doesn't even really matter whether she does or not as long as she's happy and independent. But this gives me so much hope for her mobility. I cannot wait to get her braces so we can really see what she wants to do. The food trials are going so much better than we could ask for. She wants more, more, more! Her five trial bites are never enough for her. And her language is improving too, she is developing new speech sounds that we've never heard her say before and she even throws me a bone now and then by saying mama. Occasionally. Dada is still the word of the day, every day!

Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.

Change and Clarity

Change (Verb) Make or become different.

There's so much to say about one little word that can cause so much turmoil or so much celebration. We pray for change, dread change, make things change, and deal with change that is forced upon us. Sometimes we have control over what changes and other times we don't. Change is sometimes a blessing that is immediately visible to us, while other instances of change are blessings in disguise. Change is all these things, but it's also just one thing. Change is what you make of it. No one else but you can decide how you handle it and what you decide the value of it is. What brings on all this insight? Why, changes of course! Not to worry, Princess Callista is still being her sweet little self, but change is occurring in our lives. Two big things. Neither of which I am thrilled about but it's not a choice and we will make the most of it. Callista's neurosurgeon called Monday and informed us he will be moving to another hospital at the beginning of August. He will be there to read her full MRI in July and help in planning what to do about her syrinx, but if she needs surgery, he will not be the one to do it. The thought of a stranger cutting into my daughter makes me ill. But these guys are professionals, they do the same thing our neurosurgeon does, and they work for one of the best Children's Hospitals in the country! And I've heard such great things about both doctors we have to choose from so we can't go wrong in dealing with this change. One very helpful SB mother has me swayed as she shared stories of how their neurosurgeon cares for her son. And a positive is we still get to keep our favorite nurse practitioner. We realized doctors come and go, but we just didn't want it to come so soon. We get comfortable, we feel certain, and we build trust only to have to start all over. But it is what it is and we will keep moving forward. The other change is a bit more personal, and the details haven't quite been worked out. My job situation is changing and it's time for us to decide what is best for our family. It's one of those changes I talked about, that are forced upon you and you must make it whatever you need it to be. I needed it to be a sign, and it truly was a big one, a wake up call to say the least. Things will get hard for us financially, but my husband is ready to step up to the plate while I take a step back and do some soul searching. I can't foresee what will happen in the time between now and Fall, but again, i want to make of it whatever I can. One thing I've learned in the last two years is that even though society gives the impression that you must put others first, if you neglect yourself and your needs you're not doing anyone any favors. Here's where the clarity part comes in. Clarity (Noun) Clearness of thought or style; lucidity: Let's face it, we all need some clarity in our lives! Wouldn't it be nice if every time you were faced with an option some omnipotent voice would clearly state "Choose the bacon burger for lunch today". Granted, our situation is a little more serious than choosing between a chicken club and a burger, but I have to admit the voice choosing for me would be quite helpful. There is the saying that everything is not black and white, but the gray area is so hazy. When we get into the gray area, we lose our clarity and gain self doubt. I wish I was more spontaneous, willing to jump without looking or thinking (sometimes!), but I am an over thinker. I will think about something for days, weeks, even when it's over and nothing can be done or changed. But in this instance, I am letting it all go and leaving it up to prayer for clarity and I will be guided to the one and only choice that is right for us. I will not have doubts about the choice made. I will not have regrets one way or the other. I will be the spontaneous jumper! I just want to feel at peace with myself and my environment and unless I let go, I'll never achieve my goal. Here goes nothing, or everything depending on how you look at it :) I also want to give a quick Thank You to all of the wonderful people assisting us with our benefit coming up July 28th. Every day, I am in awe and just plain baffled by the outpouring of love and support. I am looking forward to seeing many of you there. We love and adore you!

Happy Nurses Week!

Since Callie can't say it yet, I will say it for her. Happy Nurses Week to all the nurses that have touched our lives. We had our favorites from the J4 NICU (Thanks Joann and Layla, you rock!!) and we can't forget Sherri and Liz from A2 (love you guys!). We spent almost 3.5 months of Callista's life basically living with the folks on these floors and we couldn't have survived without their humor and love for Miss Callie. We also thank Callie's home nurse, who has been so sweet and kind over the last eight months. We wish you luck as you move on <3 

Mostly, we want to thank our MOST FAVORITE nurse ever, DADDY!!  From diagnosis day until today, it has been such a blessing to have a nurse as a husband and father. He takes such great care of our little bug and helps me wade through the medical jargon and random test results. He is there to keep me from being intimidated and to ask questions I wouldn't think to ask. And of course, he is there to do the gross stuff like IV antibiotics and dressing changes (hehe!!). Our family would not be as strong without this wonderful guy in our lives. We love you!!

Be nice to your nurses this week and every week! They work hard, they work long hours, and they take time away from their family to take care of yours.