Its Been a While. UPDATES

    Hey all!! I know its been quite a while since my last update so I'll try to fill in. Celina Had quite an eventful cold & flu season. The hospital staff joked we should just pack up and move in. We're there so often (also its a small hospital) That were on first name bases now. First she was Rushed to the ER by ambulance due to seizures and losing consciousness. We discovered she was having febrile seizures and had pneumonia. Definitely one of the scariest moments of my life! Then a week later she was sick with RSV. They initially wanted to admit us to stay in the hospital, But given were 10 min from the hospital I was able to convince them to send us home with a nebeulizer (sp?) and equipment. I was a little nervous, but given how much a hospital stay disrupts all of our routines, Ryan needing to take of work to watch Eli, Eli missing school due to being there so late, Celina being bored out of her mind and antsy etc, I felt this was our better option. I was one stressed out mamma for a good while. And my little Eli. I think he's starting to feel a little pushed aside. The day after one of the hospital stays, Eli was in the bathroom and yelled to me, "Mom! Im sick!! I need a doctor Mamma!!" It was one of the cutest yet heartbreaking things ever! Feeling like he needs to be sick to get attention. Instead of getting him a doctor per his request, I asked him if he would like to snuggle up together on the couch until he 'felt better'. Low and behold it worked like a charm, and an hour later he wast even sick anymore! 😄 Now I'm trying a little harder to divide my attention evenly. It doesn't seem like it would be, But its easier said than done. Its so easy to get consumed in the stress of a medically complex child. Always waiting and ALWAYS watching. Celina's Spurts seem to spring up out of nowhere. The day she was rushed via ambulance was just a normal day. she started vomiting again and its so normal now because she does it so often that I didn't think much of it. Then her eyes rolled back and Instantly I knew something was wrong. How am I supposed to keep my eye on her 100% of the time? What if i had not been looking directly at her when that happened and she choked on her vomit? How do I do this parenting thing fairly and correctly?? Only time and experience will tell I suppose.😩

   Anyways!! On to the good news!!! I think its for real this time!! Over the past few months, Celina's Cochlear team has called a few times to say we could move forward with the surgery. Only to have them push it back over and over again, waiting on this or that. It was extremely frustrating. Having your hopes up so so high, only to have them crash down over and over again. I just want to get it over with! The stress of knowing shes gong to have this operation next to her brain is nerve wracking. Not knowing when its going to happen in order to mentally prepare is worse! But FINALLY on my Birthday S (scheduler from cochlear team,Only person from the team I've been in contact with all these months) Called and told me 100% we get to move forward!! Yay!!! I cried, She cried, It was a happy bawl fest! LOL! Anyways, we set Celina's surgery date for April 7th! I was told a normal cochlear surgery is about 5 hours. It can be a lot longer for a CHARGE kid due to how messed up and tangled there nerves and anatomy of the ear are. They have done an MRI and know her right side (side being implanted) has the auditory nerve (unlike her left) but wont really know the full scale until they actually open her up. Some CHARGErs go in to surgery and once open and the doctors get a look they are not able to continue due to how messed up it can be. Praying that is not the case for us. Would hate for her to go thru such a major surgery for nothing! Dr. M also is having another Cochlear surgeon come in to help her, just in case once she opens her up there are complications. Makes me feel a little more at ease. Depending on how fast/well Celina heals they will activate her device 2-4 weeks later. Ive been warned not to be expecting an aha! moment from Celina. When they first turn it on they turn it on very very low and Celina may not and probably wont even notice sound. then gradually over a few weeks they slowly turn it up more and more. They do this so its not so overwhelming and scary for the child. Next week we go pick out our device, colors, style, accessories and all that good stuff. Im looking into an FM system for at home. This is like a microphone that I would wear on my shirt that goes directly to Celina's ear. It could also plug into Ipods, phone, TV, Computer things like that. Its not included in with the actual cochlear device so hopefully with the money raised we have enough for this as well.

     I'm nervous and excited for this. I think the excited part speaks for itself, but Im nervous because I don't want this to change her sweet yet sassy nature. I want her to continue to be happy 24/7. (seriously she is the happiest baby I've ever met). I want the surgery to go without a hitch. I want her to not have any of the horrific side effects that can sometime happen. I don't want this to be a mistake. I want to know I made the right decision. I want to continue ASL. I don't want to get lazy with it and lose everything we've gained so far. Because She will still NEED it. No joke. NEED. I want her to not have to suffer any complications from surgery. Most of all I want her to survive it. Sounds morbid but how can that not be in the back of my head? Its constantly worrying me. Lots of thoughts and prayers please.

   This week Celina seems to be sick with something. No fever but getting sick from both ends 😷 and has been very lethargic and sleepy almost all day for 2 days now. Not really wanting to eat either. I bring her in tomorrow so hopefully its something mild. Will update if not. Anyways. I think thats about all Ive got for the moment! So, Until the next one! 🙋

Ambulance Ride

she HATED her Oxygen mask!

Still Happy Even when sick!