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!!!