CHARGEing on

   Hey all! have quite a few little up dates to give! First and foremost, Celina is sitting unassisted!!! This started about a week ago! I'm so excited!! Then a few days later she started crawling! Yaaay! She can only crawl for a few seconds, but still!! She knocking it out of the park! :)

  For a nephrology update; Celina's Blood pressure has stayed within normal limits the last few times we've seen them so Dr. K released us from his care. ALWAYS good news! He only wants to see us again if Celina has a high blood pressure reading! One specialist down!

  Cochlear; So we have had a TON of support and luck in our fundraising. gofundme has brought in a good chunk, My sister and a few ladies are running an AWESOME online etsy auction. So far there are over 100 Items up for auction. Seriously AMAZING. If you want to check it out feel free to follow https://www.instagram.com/cents_for_celina/ on instagram! Ive also started a T-shirt campaign. We've designed a T-shirt to show support for Celina. All proceeds will go to Celina to help her get a cochlear. If interested in purchasing one you can do so here  https://www.spreadspirit.com/celina-cochlear#/1-size-s/91-color-royal/256-style-g500_heavy_cotton_5_3_oz_t_shirt Over %50 of your cost goes to Celina. We are also going to have a benefit sept 24th. Some awesome family members are helping gather items, put together baskets for a silent auction and bake sale! So I feel one way or another we're going to be ok! To receive all this help and support is literally mind blowing!! We have such AMAZING family and friends. To say Thank You would be a MASSIVE understatement. Our hearts have swelled so much with each donation. I wish there were a way for us to show how truly thankful we are or to give back. Tears of joy have been cried.I don't say this lightly, We feel so overwhelmed with love and support. We are truly blessed. Thank you! To each and every one of you!

   Insurance; So I've received some support in helping fight our insurance. The one thing that makes it difficult is, we aren't technically "denied" because they will cover the surgery. This makes fighting it a bit harder, but we're still pushing. Also I was the first person to ever have this issue, but given we started this fight a few months ago more of these issues have emerged for others as well. So what exactly happening is; Right before we submitted our claim, a new portion of obamacare rolled out. With this update a loophole was overlooked. Whats happening is, They will cover the surgery but not the supplies, There cant be a surgery without the supplies (in this case the Cochlear itself) because the ":supplies" are what need to be surgically implanted. Its all so confusing and a big mess. We have also applied for grants to help cover portions of it, but unfortunately, because before the loophole, state insurance should cover the entire thing. For this reason all grants we've applied to have denied us because we're on state insurance. If anyone has any other Ideas or information I would absolutely appreciate if you wouldn't mind sending it to me!
Thanks again so much everyone!! Sending all our love!

Sitting all by herself like shes all big and stuff!!

Seizures

    Good evening everyone! Hope you all had a great weekend! Mine was..... Eventful. For those who don't know, you may be able to tell by the title that Celina had some seizures this weekend.

  Friday started out pretty normal. I had my younger sisters over (E&K) and Eli wanted to go to the park. So around noon off to the park we went!  Eli and Celina both were having a great time! Celina went on the swing for a bit, as she has many times before, but mostly sat on the bench with me and just watched Eli and her aunties run around. Around 2 we left and headed for Wal Mart to pick up a few things. At Wal Mart Celina vomited quite severely. Before we put her on thickened liquids she did this frequently so I didn't think much of it. Just thought "oh shucks. Thickening the liquids isn't helping with the vomiting." We left Walmart and she vomited again in the car, again nothing new or alarming in the fact it was happening, tho when it happens in the car its always scary due to her being strapped in and a choking hazard. So we get home, Celina rolls around on the floor and plays with toys as I get dinner ready. We all sit down to eat, I get Celina in her highchair, give her her food, and we all get to eating. As were all eating and chit chatting I'm playing with Celina, trying to encourage her to eat, and she starts shaking her head. Those who are around Celina a lot know this is completely normal, she does this when shes super excited. So shes shaking her head and i'm giggling at her weirdness, when she starts shaking her head a bit more jerky and her eyes start rolling back into her head and going back to normal over and over again super fast. I quickly asked everyone if they were seeing what I was seeing, but by the time they looked it was over and she was back to being her silly self giggling and banging on her trey. So I brushed it off as her eyes maybe losing focus or maybe getting dizzy. After she was done eating E went to give her a bath and E witnessed it happen again. I still wasnt to concerned as what she was doing was only lasting seconds. Then she started vomiting again. Two hours later The weird shaking happened again. This time more severe and lasing longer. Followed by extreme amounts of vomit. Now I was worried. So I take her temp, she doesn't feel warm but is shivering so i'm panicking. Normal temp. I called the Nurse line and told them what was going on. They advised me to go strait to Children's as it sounded like seizure activity. All the while Celina is still vomiting almost non stop. I get Celina in the car, Have my sister K in the back seat with her so that she could push Celina's car seat in an upright position if she were to vomit on the way and off we went. The drive there was horrible and nerve wracking. Celina vomited 12 times in the 45 min drive to Minneapolis Children's. Violently vomiting, choking, gagging, I couldn't get there fast enough. She was soaked in vomit when we got there. We even had a towel wrapped around her to catch any vomit and that was soaked thru. Dripping. we get to Children's and get sent strait back. (those who were in the waiting room were not pleased and were yelling at us that we were going ahead of them) We meet the doctor and hes extremely concerned. Orders a panel of blood work and admits us. At this point Celina is already severely dehydrated so they want to put an IV in her for fluids. Let me tell you. Celina's a fighter!! It took for of us to hold her down so they could get a line in. It took forever! She screamed like never before! It was heartbreaking!! Once they did get it in they blew her vein. Her Screaming decibel tripled. So we had to try the other arm. Now Celina is so extremely tired and doesn't have much fight left so it goes a little smoother. She was able to fall asleep after. My poor baby. I felt so bad for her. Trying not to cry was HARD. We finally got brought up to our room at 4 am. First thing in the morning ( normal morning) a team of doctors came in and went over the game plan. They debated starting her on anti seizure meds right then, but decided to wait until after she had an EEG to see what the results were instead. When Celina woke up she seemed back to her normal happy self. The only thing that bothered her was, they put her IV hand in a splint and wrapped it, so she couldn't pull it out, (but boy did she try) so she couldn't use her hand. She would lift it to her face, look at it and make a little annoyed cry. It was actually kind of cute. Tho I felt bad because it was her signing hand. Later that morning they pulled more blood, Those came back relatively normal. And we went in for a 20 min EEG. By this point Celina was sick of being poked and prodded so she didn't like having probes being stuck to her head AT ALL! She kept ripping them out. So once again we had to hold her down. The Neurologist came to give us the results of the EEG a while later. She said that Celina was super wiggly during the EEG but from what she could see it looked fine. That shes not sure if Celina was having seizures or not, so she wasnt going to put her on meds quite yet. She also asked me to try and catch it on video if it happened again. She asked about Celina's face twitch and said that can also be seizure type activity. Also if it happened again we need to go back in for a 3hr EEG.  Other than that we got no answers and were sent home. No answers to her Non stop vomiting either. But she had stopped and was holding down milk, so they felt no reason to observe her longer. So. Just another thing to look out for, worry about, and probably never get clear answers on.

Am I doing the right thing??

    Im sitting here today, feeling shocked, confused, and hurt. I have received some backlash in putting up a gofundme campaign for a cochlear for Celina. I guess it looks like a money grab. I don't even know where to begin with this. or even if I should. I don't owe anyone an explanation. But for some reason still feel the need. I don't know, to maybe justify it to myself?

   I know I literally JUST threw a fundraiser for the CHARGE Syndrome foundation. Maybe putting this up so soon after is what gives the impression? Maybe I should have waited? The thing that just sticks in my mind tho, is the older they are, the longer you wait to have the Cochlear put in, the chances of best results fall. I know I'm not going to raise enough in a month let alone a year to get things going. So I guess my thought process was, the sooner the better. Maybe I was wrong?

    I also need to keep reminding myself, those who know me. Those who love me, Know completely %100 this is not a "money grab" they know me better than that. I just cant help feeling extremely hurt. Wouldn't anyone do whatever they possibly could to better their child's life? This is not for me. The fundraiser was not for me. These wont/have not gone toward personal spending. If anything the Cochlear is going to make my life way busier, more complicated, and not to mention more costly than it already is. We will need to go down to the cities a few times a week for therapy and mapping. This is on top of all her specialists appointments and at home therapies. In fact they wanted to start already, before we found out insurance denied us. This is for Celina. This is to make HER life better. To ease her struggle. To, if anything, give her a sense of "place" given she has limited other inputs. Starting the campaign was HARD for me. Therapists and friends had to help convince me. Just please. I beg. Don't judge what you would or wouldn't do until your in my shoes. I would climb mountains for Celina. This time? I had to swallow my pride for a flicker of hope.

    We obviously don't expect the entire thing to be covered. We know that that's not reasonable. We know that our own pockets, time, odd jobs, and savings are going to be scrapped completely dry for this. Just even with that we still need help. If I have given ANYONE the impression I was a money grabby type of person, I sincerely apologize.  I obviously need to work on presenting myself in a better light, or stop being so shy so you can truly get to know who and what type of person I am.

    The hardest part is I allowed myself to get excited about the cochlear. I held off allowing excitement until after the MRI to be sure she was a candidate. Now? I just feel crushed. It feels so far out of our reach.

Cochlear update

Hey all, just got the news that we are still hitting road blocks and have basically hit a wall on getting Celinas Cochlear covered by insurance. The insurance will cover the cost of surgery but not the device itself. So I had to swallow my massive amounts of pride, humble myself, and tell myself "this is for celina" over and over again, and set up a go fund me page. Any help is appreciated.

http://www.gofundme.com/2iwt7w4

REFLECTIONS & Swallow Study

    Good evening all!
  So Today we had Celina's swallow study. Unfortunately she failed due to aspiration of liquids. So they tried thickening the liquid up to the thickness of a nectar and she was still aspirating. They thickened it again to the consistency of honey and she seemed to do a lot better. They are hoping they can keep her healthy on a thickened diet and will hopefully have less respiratory illnesses. They haven't told me exactly the reason or cause for her aspiration quite yet, but they will review the video swallow and hopefully have an answer. So, now we have to buy thickener and thicken all her liquids. Celina is not to pleased about this. Its hard work trying to get something that thick out of the bottle! Even with the special nipples they gave us. They also told me the pneumonia she had last month is most likely due to aspiration, and wouldn't be surprised if it was her cause of RSV as well. (only if it was RSV pneumonia not RSV Viral but I don't remember which one she had). So! now there's a lot more work to the eating process. Im thinking in order to make it a little easier on myself I'll pe-mix all her formula/milk for the day into a jug every morning with the thickener so that I don't have to go thru the process of mixing and shaking every 3 hours. if anyone has any experience or suggestions, that would be great!! Suggestions on types of bottles or sippy cups that might work a little better would be helpful as well! They just have to be silicone nipples, otherwise Celina doesn't know what to do with it. I currently use the DR. Browns bottles, But it seems with the valves and straws that they have it takes a lot longer for the thickness to get thru it and eventually into the nipple. I think I have a lot of experimenting ahead of me.

   Celina is officially a one year old!! I cant believe it!! In some ways it feels like its been sooo much longer than a year, while in others it seems like its gone way too fast! To think that a year ago we had no clue. No clue about any of this! No clue there was a Syndrome called CHARGE and that our new sweet little girl had it. Looking back and remembering my expectations of my perfect baby. Remembering as each diagnosis would be given. How it felt as if they just kept snowballing. One thing after another and another. The feeling of heartbreak. Then the guilt. All the guilt. I felt guilty for everything! But felt most guilty that I felt heartbroken. Because she was still perfect. Just not by Societies standards. I had to mourn the loss and vision I had of a typical child and a typical life. I've had to tweak my expectations of life. Its been quite a journey. Its been quite the year! we have learned so much! Our family has started learning and using an entire new language, I've learned and studied a Syndrome I never even knew existed. I've changed and grown so much as a person. The little stuff that used to matter so much to me, doesn't even occupy my thoughts anymore. The past year has been one of the hardest, life altering, eye opening, yet most inspiring years of my life. I've been tested. Sometimes I wonder how I did it. I often get asked how I do it. And while its no picnic, and i've definitely fallen into pits of what felt like despair, for the most part I didn't even think about it. I just did. When its your child, who you love more than life itself, you just do it. Without a second thought. You just want to make life better for them. When given a hard diagnosis, my thoughts would immediately jump to "whats next" "what can we do to make things easier or better for Celina". Only at night when I would let my mind wander, would the thoughts of "why her?" or 'how are we going to get thru?" come. But they wouldn't last long. And I cant dwell. I truly feel I do well largely in part to all your thoughts, prayers and support. And of course putting my faith in god. I know this journey isn't over. Its only just begun. But boy is Celina a blessing! I can honestly say, there are definitely more good days than bad. And I'm ready to take the rest of her years on with ferocity! With everyone's thoughts, prayers and support. and by the grace of god, we can make it through anything!! CHARGE on!!!

   Celina's Birthday/Fundraise party went extremely well! We had a very good turnout!! We were able to raise $1,550.00 for the CHARGE Syndrome Foundation!!! While we didn't reach our goal of 2,500, I'm extremely happy with our results! All the kids had a blast! and celina LOVED her cake made of pudding and coolwhip!! If anyone would still like to donate you still can! Just go to the link on my last Blog post and you can donate there! Maybe we can meet our $2500 goal???? Anyway, Thank you so so much for the contributions and support! When we went in to sign Happy Birthday to Celina, I had looked up. I had to look right back down to avoid crying in front of an audience. Looking up and seeing what seemed like a sea of people. Knowing they were all there to support us was so overwhelming. so heartwarming. I had to fight back the tears. I cant express how much everyones support means to us. Seriously. Its everything. THANK YOU!!!