Hey All! sorry its been so long. Its been crazy busy for us lately!!! Lots of updates! :)
First off, fundraising. All you guys are AWESOME! We have raised about 17k in donations!!! Both auctions went extremely well and we are truly and deeply touched by all of those who helped out, participated, and donated for miss Celina. "Thank You" would feel like a massive understatement. We are eternally grateful. We feel so blessed to have such wonderful, giving, friends and family. We are amazed at the generosity of complete strangers. Faith in humanity is not dead! Thank you from the bottoms of our hearts <3
Scoliosis. We also had Celina's follow up appointment with Ortho. They took X-rays and her curve has progressed by only 2%! Yaaay! That means as of now were not going to take any preventative measures. The want to see us again in 6 months when she is hopefully standing independently for X-Rays. They want to see how much the curve changes once her weight is put on it, and then we will go from there!
ASL. Those of you on facebook got to see the awesome video of Celina signing!! She signed "fish" as we were looking at the fish tank. You could almost see the light bulb go off in her head that, Hey! Im communicating! And now every time we sign fish she looks over at the tank and smiles :) Such a wonderful experience! The little things mean so so much to us. Things we realize we used to take for granted. Like being able to communicate with your child. Now something so simple is cause for celebration in our house. Im one happy mom over here!
So in my last post I believe Celina had just started sitting. Well. Now she's crawling ALL over the place, pulling up on furniture to stand, and most recently has started actually moving along the furniture!!! Another cause for Celebration!! Its almost like Celina woke up one day and decided "I'm gonna do this!" and boy she did. within a few weeks shes almost caught up to her age group, where previously she was months behind. I dont think she would be this far without the hard work and advice of her therapists. We work so hard with her (Celina does too, shes out like a light once therapy is over) and its so awesome to see results.
Vomiting. Celina has also started vomiting again. Not as much or as frequent before, but at least once every other day. Now its thick vomit due to her thickened liquids so it makes the choking seem a bit more scary. We will have another swallow study this month to re evaluate and hopefully find the cause.
Crainofacial Team. So in what I call my "post september haze" (seriously. September was ridiculously busy) I showed up bright and early to our Day long appointment today, only to find out that the appointment is next week! ha! Anyways, here we will see a team of doctors (dentist, audiologist, ent, OT for feeding, the list goes on). We will see each doc independently at the beginning of the day, and at the end have a big group discussion on what would be best and how they want to move forward with Celina's needs. I've been anxiously waiting for this one so I'll update next week!
Cardiology. November we will see the Cardiologist. We will have another ECHO to see if her PDA and PFO have closed. If not the will go in to close it. If it has, I believe we will be released from their care!
Disability. We're currently looking into getting Celina certified as disabled thru the state. This is for insurance purposes. If we can do that, Celina will be SMRTed thru the state and we will never run into an issue like we did with the Cochlear again. She will be on full Medical assistance. An advocacy group I have been working with (trying to get the Cochlear covered) called PACER has helped tremendously. They sent me the state and federal guidelines for what would consider someone as disabled, and Celina definitely qualifies. Now its a matter of a few months of paper work. .. .. YAAaaaay.... .. ..
Last but CERTAINLY not least, Cochlear. Alright guys. Im kind of freaking out over here. Today I received news that TOMORROW they will call back to schedule the surgery!!!!!!!!! We do have to move the surgery to the U of M but this way they were able to get BOTH the device and surgery covered, by billing one thru Children's and one thru the U of M!!! Im so excited!!!!!!..... and scared.... and nervous... but mostly Ecstatic!!!!!! I dont know whether to laugh or cry. It almost seems too good to be true! One thing that hasn't been able to get covered yet is the aftercare, which is the therapy and brain mapping that Celina needs after the device is implanted and activated. They said, due to Celina's age, lets just move ahead anyway and cross that bridge when we get there. Thanks to you wonderful folks, Ryan and I dont need to stress about that, as that is what your donations will cover. I'm so overwhelmed! So happy. Such a weight has been lifted off of our shoulders. Its hard to stay upbeat and positive when you have something so large hanging over you. I'm so glad that for the most part, were thru this part of our battle. And hey. They say "what doesn't kill you makes you stronger." And I strongly believe we were given this particular battle for a reason. Maybe down the road I'll need a lot more strength, and this has most definitely helped strengthen me. In the thick of it I couldn't see the end of the tunnel. But look now. We're almost at the end of this chapter. I just pray everything stays on track and as expected. If so, within a month Celina will have her implant. Wheew! All of these emotions. Please excuse me while I go wipe my soggy face due to tears of joy!!
