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!

Curiosity's of strangers

    "Whats wrong with her?". I was asked this, this morning by a complete stranger at the grocery store. Not exactly sure how to feel about it. For me its slightly unsettling and I cant pinpoint exactly why. I think its safe to say tho, that Celina is starting to look 'different'. I did started to notice a change in her appearance lately. In fact just last night I was telling my family that I thought Celina was starting to look more and more 'special'. (Is that an appropriate way to even explain it? special? I don't know how else to.) But thought it was just noticeable to me and family who see her often and know her history. Apparently I was wrong. The little old lady who asked was genuinely curious, so I wasnt offended. She was very sweet and genuine. Maybe the unsettling part is knowing I'll probably be asked this throughout Celina's life? Or the fact that if she was older and could hear she would understand what the word 'wrong' means and are people going to ask me this with her right there? Because she looks different are they going to assume she doesn't comprehend whats being said? That would be downright insulting and ignorant. If she gets her cochlear she will be hearing these conversations. If and when this happens I don't want Celina to get the notion something is "wrong' with her. God made her the way she is for a reason. He makes no mistakes. Maybe I would have felt better if she had asked using a different word than 'wrong'. Perhaps asking "what does she have?" would have made me feel better. I dunno. You don't realize how much impact a word can have until it does. I sure as heck didn't.

   We had Celinas Heart appointment earlier this month. Her PDA is still there. Last time we were at the heart clinic we had no clue to any of celinas issues besides being deaf. So after filling Dr. V with her medical history and him looking at her records, He decided, because its not very large,  he would like to see Celina grow a bit more, and get past some of her other surgeries before doing an invasive heart operation. He said we will probably do it next year unless Celina has more bouts with Pneumonia or RSV. If she does, he will do so as soon as possible. Im so glad I don't need to stress about a heart operation at the moment! Im also not sure anymore how he plans on closing the hole. If her medical history for some reason changes how they would do it. Only because he used the words "invasive heart operation." whereas the first initial appointment he said what they were going to do was not a big deal. I wish I had thought to ask. I was on information overload.

   Well that's all we have for now for updates! hopefully things continue to go smooth in the health department! Otherwise, still fighting for that CI!

Because, who doesn't love looking at a chunky baby??

The days I never like to admit

  This morning is just one of those mornings. A morning where I've gotten maybe 2 hours of restless sleep. A morning after questioning all my parenting decisions, wondering if I made correct ones? or if I could have made better ones. One where I cant seem to turn it off and delve into house work or other distractions. My brain keeps drifting back. A morning of fighting off tears for who knows what reason? They're just there. Ready to spill out. I find myself wondering why. Why is this sometimes so hard on me? Why cant I be a fierce warrior mama like so many I see? Why cant I just be strong? Now in all honestly I dont always feel this way. Most days I have an overwhelming sense of love and blessedness for having such an amazing family. Just every so often, on a day like today, doubt sneaks its way thru. And I feel broken. Helpless. Unworthy to parent my children. I struggle within myself. Wondering why I feel this way. How DARE I feel this way. And the guilt consumes me. I ask myself if I even have the right? There are so many other children and parents with issues far greater than ours. You can see their strength as you watch their fight. And here I sit with minor issues, a beautiful daughter with a full life ahead of her, and am about to lose my mind. I feel so stupid. Im just so tired. Tired of appointments. Tired of hoping. Tired of the paperwork. Just tired.
   I just want to sleep. And sleep and sleep and sleep and sleep. Like how I used to deal with bad days. But I cant.          I want to.        But I cant...
   Here's to Monday, may tomorrow be brighter

Sigh.... still waiting....

    Hey guys! Quick update!

       So I got the call the next day from the surgery scheduler only to be told they were still going to wait on insurance. Definitely feeling deflated in this and that Im in a never ending battle. So honestly, I dont know when or where the Cochlear is going to happen But Im continuing with pushing forward in the fight, no matter how exhausting it has become. At our last hearing test we were told she was getting next to nothing with her hearing aids in, so we haven't been putting them in. Yesterday I decided to put them in again just to see if there was a response. There was! Celina would turn to us if we were yelling her name. It was kind of exciting, she tolerated them very well. When she was wearing them before, she would constantly rip them out. This time she just kind of put her hand up by her ear as acknowledgment that something was there but didn't rip it out. She just kept turning t us and smiling every time we yelled her name. Priceless!

   We had Celinas Craniofacial Team appointment as well. Everything went as expected. They don't want to see us for 2 years! The only suggestion was, at one of Celina's next surgeries they would come in and zap some of the redness away from above Celinas lip. Later down the road they will also do a revision surgery to thin her lip and pop her nose up a bit so it doesnt start to flatten due to scar tissue as she grows. Other than that, her teeth are coming in crooked but they say there is time for them to shift right so they are not taking steps with that as of yet. We met who will be Celinas speech clinician, who I was very happy to learn was not against the use of ASL when we do get the Cochlear. And then Psychology who said Celina seemed to be a happy, healthy, well loved little girl :) Along with a slew of other doctors it turned out to be a long day, but we left happy with no new major issues to report!

   In about 3 weeks Celina will see Cardiology for her PDA and PFO. At 9months old they were still present and hadn't shrunk, so hoping for good news. Thankfully if they haven't shrunk, and are still there, she doesn't need a scary open heart surgery or anything. They will go in and plug it with kind of what they use in a colonoscopy. If they have closed on their own, we will be most likely released from their care! So praying for good news!

   Swallow study. We have another swallow study later this month! Hoping Celina is still not silently aspirating on her honey thick liquids. It would be an even bigger plus if she were able to move down to nectar thick, or dare I say regular liquids? Our fingers are crossed on this one as well!

      Now. I may start to sound like a broken record, but I cant help it. I feel as if I could NEVER thanks everyone enough!! So I would like to Thank everyone once again for all your support and help in raising money for Celina's Cochlear!

A Plethora of updates and some FANTASTIC news!

   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!!

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!!!

Its already been a year??!!

   Good evening all! Just got done putting Miss Celina down for the night. She was being really odd and wouldn't go down like she normally does, so I rocked her and she was out in two seconds flat! She fussed again when I put her in her crib but immediately fell asleep when i patted her stomach a few times. Just odd for her.


   Anyways! Swallow study. Unfortunately my brain was fantastic this week! (insert sarcasm) I was positive the swallow study was on Wednesday so on Tuesday night I got the paperwork out to look over to make sure I brought everything I needed and how long to withhold food. Well.... Turns out the swallow study was that day and I had missed it!!! UGGH!!! I was waiting so long for this one!!! I even had it in bright red on my big calendar hanging on the wall for the right day and I still somehow missed it!!! So we rescheduled for the beginning of August. Celina has been recovering quite well from her Pneumonia! Shes still a bit raspy in the breathing but no more fevers and her cough is completely gone! yaaay!
   Cochlear. So we saw Celina's Surgeon Dr.M on the 8th. We were supposed to schedule Celina's surgery that day but were unable to due to insurance. Apparently due to some glitch or "technicality" in the system they will cover the surgery and everything that go's with the cochlear but not the cochlear itself!! Just One cochlear runs for 40 grand!!! YIKES!!! So we have a few options to look into but it looks like its going to take a bit longer to get this rolling than expected. A few days after seeing Dr. M I met with the cochlear team of Audiologists. At this appointment they went over a lot of questions I had, Showed me 3 devises that I would be able to choose from and some pamphlets from different cochlear brands. They were definitely interesting!! I guess I don't know what I was expecting them to look like, but I was surprised at how small the piece that actually goes into the cochlea was! The only thing I'm NOT looking forward to is, we will have to go to Children's once a week for therapy's. This is on top of her already four therapists, Dr. appointments and everything else! I'm gonna be one busy tired momma.

   Celina's Going to be 1 at the end of this month!!!! Can you believe its already been a year!!!??? I cant believe how fast it went!! My princess is growing up! For Celina's birthday we're throwing a huge Birthday/Fundraiser for the CHARGE Syndrome Foundation! I'm really excited, but man its a lot of work!! I feel this time I may have bit off a bit more than I can chew! With Celina's appointments/Therapy's, and then were in the middle of a house remodel, which we would like to have the majority done before the party, AND the fundraiser, its safe to say I'm not getting much sleep! Haha! Sometimes I wonder why I do this to myself!?? Oh well! It's for a great cause!! So for those of you I don't have on Facebook and live within the area you are more than welcome to come!! Otherwise if the rest of you would like to donate in honor of miss Celina's first Birthday you can do so here! http://csfeighthannualcifc.kintera.org/celinamurney ANY help is appreciated!! All funds will go directly to the CHARGE Syndrome Foundation!
Cant wait to post pictures of the party!! Until then have a great rest of July and thank you all for your support!!
http://csfeighthannualcifc.kintera.org/celinamurney

Another late night hospital run 😧

Hey all! So I took Celina into the hospital tonight due to a high fever and rapid breathing. My biggest concern was, she has been violently throwing up about every other day and I was worried she asperated into her lungs causing pneumonia. Sure enough! She has pneumonia! Thoughts and prayers for quick healing please! They said it was caught very early so it doesn't require a hospital stay. Next week we have her swallow study to try to figure out why she keeps vomiting and hopefully get some answers!

MRI and CT results

Hey guys! Just got the mri and CT results from celinas doctor. She's missing her semi circular canals completely. This means she has no balance or orientation and probably won't walk for quite a few years. On her left side her facial nerve is small and messed up that's why she twitches that side of her face so often, it's very weak but not at "facial palsy" yet. Also on her left side they couldn't see an auditory nerve so the cochlear Is out for the left side. Her right side there was a nerve so they're going to give implanting that side a try. Her mastoids are also underdeveloped so it will make implanting more difficult, but she thinks she can do it so we're giving it a shot! She said the surgery will take longer than normal due to complexities.

  I'm not horribly educated on all of this and what it all means but will see Dr. M on the 8th and will give more details then.

"She's Delightfully Chaotic!"

    Hey all! So a few updates since the last time I checked in!  First Celina had her follow up ophthalmology appointment (for the eyes) about a week ago. Im pleased to say its the firs appointment where I actually left smiling!! The colobomas are still obviously there and always will be but besides those her vision is right on track with her age! Her Doctor was pleasantly surprised! She wont be needing glasses in infancy for sure! Possibly when she reaches adolescence, but for now we're in the clear!! yaaay! He doesn't want to see us for another year!! Always good news! With all other specialists we never get a clear answer. Everything is always a waiting game. Her normal Pediatrician says that seems to be the trend with Celina. Her results are never "normal" but they're never bad or severe either so it ends up being a stressful waiting game as they monitor her. ugh. So needless to say it was nice to have a clear cut answer, and a good one at that!!

   Regarding Celina's Scoliosis; Celina's PT was very shocked at when she heard what her doctor wanted to do. She said Celina's curve was significant and was expecting her to be braced. She suggested maybe seeing a new Ortho? We decided we would wait until Celina's follow up appointment and if we still don't feel satisfied we will look elsewhere. I did receive an appointment summery from the ortho that stated if her curve had progressed by next appointment we will discuss bracing, tho he feels optimistic for Celina's case.

   CHARGE syndrome; I received a CHARGE syndrome management manual for parents from the CHARGE syndrome foundation. This Manual is probably my FAVORITE thing ever!!! Its very informative, kind of scary, but reassuring and comforting at the same time. This book has just about everything I could ask for!! It explains every aspect minor to major that I have questions about. Its split into categories for each and every condition a child with CHARGE could have including Infancy, adolescence, pre-teen and teen years, and adulthood. What to look out for, what to push doctors for, behaviors, Parents of and CHARGErs themselves sharing their stories, etc. Love this thing! I have it with me at all times lately.

Here's some interesting things I've learned:

-No CHARGE child is the exact same. they all have varying features in varying degrees of sevarity from mild to severe.
-The incidence of CHARGE at birth is 1 in 12,000 births
-High post op mortality rate
-Very high risk for aspiration
-30%-40% of children w/CHARGE do not survive 5 years
      - This is usually due to major issues that Celina do not have, Usually kids with severe CHARGE
-Beyond early childhood mortality remains higher in those with CHARGE
- Risk of having another child is w/ CHARGE is low around 1-2% unless a parent carries the gene (rare) then recurring rate is 50%
-There is nothing that can be done to prevent CHARGE
-Cranial Nerve anomalies are very frequent
-Feeding and swallowing problems are common
-intelligence is routinely underestimated
-Frequently born missing the balance sense that come from the inner ear resulting in very delayed Gross motor development
-average age of walking is 3-4 years old
-prefer being flat on the ground or stable position due to balance issues
-also due to balance they may roll, combat crawl, bounce forward or backward, or 5 point crawl with their head touching the ground to get what/where they want/need
- frequent low muscle tone (hypotonia) resulting in scoliosis. Hypotonia usually due to the nervous system vs. the muscle themselves
-altered pain sensation. High thresholds for pain
-frequent diminished or absent sense of taste and/or smell
-some have significant learning disabilities

   This is only a very small amount of things but you and can view more on the CHARGE syndrome foundation website and can even view the book yourself.

  Therapy; Celina is doing extremely well! We had her 6 month IEP review and her OT said it was more of a celebration vs. a meeting because of how far miss Celina has come!  She has started rolling around to get where she wants and a few weeks ago started getting up into the 5 point crawl position!!! She'll rock back and forth but has yet to move forward or backward in that position yet. She started putting support on her legs about 2 months ago, and her head control is almost completely resolved! Yaaay! At 10 months Celina is not yet sitting unsupported, but thats to be expected. :) Celina has also started (ive seen maybe 3-5 times) signing milk! Not when she wants it but as shes drinking her bottle she will make the sign. She also LOVES when anyone signs to her!To the point where it calms her if shes crying. Also if you stop before shes ready for you to stop she will cry lol. I've started signing either ABC's or the song "you are my sunshine" and they're turning out to be favorites. Lately as i'm signing to her she will hold up her hands and wiggle her fingers as if trying to mimic me. It seriously adorable! She will also when playing by herself hold her hands within her vision and move her fingers. I've learned this is deaf baby babble! Very exciting!

    Past and upcoming appointments; So we had Celina's 9 month check up closer to when she was 10 months old. She's definitely a tiny little girl. Shes in the 8th percentile for height and 3rd for weight. Celina still wears 3-6 month clothes. BUT! shes perfectly healthy and has quite a bit of chunk on her adorable little legs. Growth is also a common issue in CHARGE. She keeps slipping lower and lower on the charts. Celina was also having some issues with eating baby food a while back. She was choking significantly no matter how thick or thin we made her purees. Research suggests this is actually due to a nerve in the brain in kids with CHARGE. But one day about 2 weeks ago I tried again and Celina did fantastic! She loooves her food now! were not trying anything solid yet due to her sitting and previous choking issues. And actually as a newborn she would constantly choke while drinking a bottle. Several people refused to feed her a bottle due to being to scared. As of now Celina still chokes on water, and unless her baby food is mixed a little thicker with cereal she will choke or not even know she has food in her mouth. Doctors aren't extremely worried because she is still growing. If she still has issues we will eventually do a swallow study.

   Friday Celina has her tube replacement surgery. Its only a 5 min procedure but im extremely nervous. Especially after learning that kids with CHARGE have a higher mortality rate under anesthesia and heightens with each time. Then she will go under again on the 23rd for her CT-MRI. So 3 times under so far before the age of 1. They were unfortunately unable to schedule them together. I actually got the detailed call about her surgery today and suddenly got really scared when they asked about a DNR. I know its standard and they have to ask, but it makes you think about it when you've been trying so hard not to. Now I know we're lucky. Celinas form of CHARGE is mild and she doesn't have any extremely life threatening conditions that require many many surgeries that most other CHARGErs do. And I sometimes feel silly. But I then again I think any mother would be nervous. Then throw a medically fragile child into it and I feel less silly. But anyways..., I'll go ahead and wrap this up before it gets too horribly long or rambling lol. If you could please send positive thoughts or prayers for my princess on Friday I would really appreciate it! :)

Celina in her 5 point crawl position for the first time. This was a very exciting day!

 

Ortho update

   We had Celina's Ortho appointment yesterday to look at her spine. Let me start off by saying I left extremely irritated and frustrated. No exaggeration, the doctor saw us for MAYBE 5 min and told us to come back in four months. What he did tell us could have been said over the phone!! We had to drive an hour to St.Paul, pay for parking, get lunch, Interrupt the entire day for a 5 min appointment!!!???? I was livid!!! Anyways. What the doctor DID say was she does have what he calculated as a 25 degree curve but is hoping that in four months she gains some muscle tone and wont need a brace. If thats the case he wont need to see her until she reaches adolescence (when she will hit a growth spurt and her curve may increase significantly). If her curve jumps into the 30s by next appointment they will move forward with braces or something of the sort. So it wasnt bad news!!! I just worry about the possibility it may curve worse and its irreversible! Still. All of this could have been said over the phone! He looked at her back for about 30 seconds not even taking her shirt off. I've just got enough running around to do that this felt like a waste of time. Sept 7th we go back in, they will take more x-rays and we go from there!!

Cochlear consult, etc.

   Hey all! we had Celina's CI (cochlear implant) consult a few weeks ago. As many of you know, Celina and I took a nice, much needed little vacation with a few of my sisters. We had her consult the day we left. We literally left from the appointment and headed off to Florida!! Needless to say I haven't had time to write a detailed post on how it went!

    First thing we did was see LJ (audiologist). We tested to see how much Celina could hear with her hearing aids. LJ had Celina and I go into the soundproof room and with different loud noises tried to determine what she could hear. During the test Celina only seemed to react or turn to extremely loud noises only on her right side. After the booth testing LJ checked her ears and tubes to see if there was an infection or her tubes had clogged. Celinas ears were a little goopy and red so that may have hindered the test a small amount. Her left tube was completely missing but she has never reacted from that side so LJ wasnt too concerned.

    After the Hearing test we went upstairs to meet Dr. M (ENT specializing in cochlears). Given Celina has had endless ear infections and one tube missing, Dr. M suggested replacement tubes. At this time we had not yet received Celina's test results for CHARGE Syndrome. So i'm a little on the fence about getting excited about this part. Dr. M said she would like to do and MRI on Celina given possible CHARGE Syndrome and what that entails. She said if everything looks ok she would like to Implant both sides of Celina at once instead of two different surgeries.  The CHARGE diagnosis changes a lot in my opinion. Most people with CHARGE have different sized nerves that are in different spots than they should be. Some dont have the auditory nerve. Some have small/malformed semicircular canals, some have too few spirals in the cochlea, Some have facial nerves or other nerves set to close to do the surgery because hitting one could cause face paralysis or other issues.... The list goes on. So we'll just have to wait for the MRI to see whats going to happen. I've actually read from quite a few other CHARGE parents that even when it looked good on the MRI once the doctor was in there and had them opened up it was just too messy or dangerous to proceed. Either way I know I'll be happy. Whats ment to be will be. Im currently waiting on a phone call to schedule the tube and MRI together. Rather than put Celina under twice, we figured we would do both at once and get it done in one shot. The tube surgery will be a one day thing. No overnight stay in the hospital!! YIPPIEEE!! Man I'm getting sick of that place!! HA! (for those who didn't know Celina was recently hospitalized for 3 days with RSV) The downfalls of living in the sticks... Many long drives to many appointments.

     Tomorrow we have Celina's appointment with Ortho. for her spine and hips. Hoping to get good news!!! (like no rod in her spine) Celina's PT notices Celina's spine being a bit more curved than the last time she was over here (2 weeks before) She believes its because Celina went thru a growth spurt and growing a crooked spine will just enhance the crookedness. Anyways hopefully we'll know more tomorrow!! Wish us Luck!!

Vacation picture! Celina loved the beach and warmth! But absolutely HATED the water!

Keep calm and CHARGE on

So today I got a call from the geneticist. Celina tested POSITIVE for the CHD7 gene mutation which means she does have CHARGE Syndrome. Maybe it was ment to be that I'm on vacation when I got these results. Because then maybe I won't over think it. Even tho my gut told me this is what she has, it's still different to get the confirmation. For a while I was wondering if I shouldnt have pushed the doctor to run this test. Im so glad I stuck with my gut feeling! While I obviously have concerns, overerall I'm very releived! We have an answer! We know what we can expect! Thanks all for all your positive thoughts and prayers, and please keep is in your thoughts and prayers throughout this life long jorney.

FISH genetic test results

  Hey all! I got the results for Celina's FISH genetics test. This was the test to see if Celina had del22q Syndrome (also know as digeorge syndrome). The results came back as I had expected. She does not have this. The diagnosis for CHARGE is now looking more likely. I spoke with the geneticist and if they are able they will use her current DNA sample to start running the CHD7 gene test for CHARGE syndrome. This takes a few months to run so i'm hoping we're able to run it in order to have results by our next appointment in June. I'll keep y'all posted!!

Because we always seem to hit the jackpot in rarities....

    As you know, I was waiting intently for both Celina's Spine X-Ray and ECHO results. Well I got them back yesterday and it looks like Celina has a 27 degree thoracic curve in her spine. Infantile scoliosis is rare but we seem to always hit the jackpot on raritys! Because Celina is so young and has many years to grow, this means her spine will get continually worse. So we need to jump on it right away with treatment. If she was say 15 it wouldn't be as concerning and they would just keep an eye on it as she grew for the remaining few years. Treatment options for Celina are a back brace either full time or just at night, or spinal surgery. If she has surgery they would place rods in her spine to hold it strait, bolt them on and hopefully keep it from curving further. Unfortunately there is no way to reverse the curve she already has so she will have that for life. We see an orthopedic surgeon on May 4th so I'll update more on this then.

    ECHO. The ECHO results came back good!! So far no thickening of the muscles/walls and no abnormal sized heart chambers!! YAAAY! I can breath again!! We have to go back in 3 months to re check but I'm feeling pretty positive!!! Thanks all for your thoughts and prayers! It was a rough couple of days there.

Here is a picture of an example of what Celinas Spine looks like:

Nephrology, Another ECHO, Scoliosis and Hip Dysplasia

  Good evening all!!! Anxiety is high at the moment as we're waiting on a few nerve wracking test results. Celina Had her Nephrology appointment on Tuesday! They took her blood pressure on both her arms and both her legs. Good news is her blood pressure was somewhat decent and is not ready to diagnose her with hypertension quite yet. YAAAY! Lets hope it stays that way! Bad news.... I think... Not sure yet... So the BP readings in her legs are supposed to be slightly elevated in comparison to the BP readings in her legs. Well Celina's leg BP readings were actually lower in her legs. So Dr.K (Nephrologist) Wanted to do another ECHO (ultrasound of the heart) on her to see if the muscles and walls of her heart are 'thickening'. This is called Hypertrophic cardiomyopothy or HCM. This could mean Celina's heart would enlarge and other possibilities. Worst case scenario would be death. I usually have a pretty good gut instinct and its usually dead on. This time? My radar is gone. I have no instinctual answer. I can just hope and pray. Im a ball of nerves. I really don't know what else to say on this subject, nor did I want to even post it given we have no idea on the possibility of her having this. I dont want to freak anyone out but at the same time, I need to "get it out". It makes me sick to my stomach to think about. I just have to push it out of my head or I'll never stop crying. I just really hope im worked up over nothing.

   Today we saw Dr.L (pediatrician) for Celina's Spine and Hips. We scheduled an ultrasound for her hips to see if she has hip dysplasia, Planned a swallow study if her eating has not improved within a month, and on our way out (after the Pedi visit) stopped in Radiology and had an X-ray of her spine done. The X-ray tech asked if id like to see the X-ray and we both observed how extremely Crooked her spine was.

   We had A (deaf mentor) over tonight and while she was here I missed a call from the pediatrician. I didn't notice his message until 8pm and he called at 7. He wanted me to call him back but when I did he had already left for the night. Im kicking myself!!! What did he call for???? What results did he want to give? Spine or heart? why was he calling way after clinic hours??? Why not wait until next appointment or next day as he usually does??? AAAAAHHHH!!!! I hate this.

Cochlear:I think we've made our decision. One of the hardest I've ever made.

    As many of you know, I've had a very hard time with this. I wish it wasnt a decision I had to make. There are many components that go into making such a massive life changing choice for my sweet baby girl. Many people have very strong opposing opinions on this. So I delved deep into both sides of this great debate that most of us don't even know exists. Trust me. It's brutal!! Opinions range from "well why wouldn't you want your child to hear" to "implanting your child is abuse". I can see where each side is coming from, but at the same time I see some extremes in them as well.
   
     The deaf community plays a huge factor in my decision making. I've joined quite a few deaf  community forums and have sat back and watched and listened. They have very strong feelings on this subject. Many feel forced into things they didn't want to do. Speech therapy, being forced to try to speak when they couldn't even hear their own voice. Then there was the mocking of how they sounded when using speech. They felt inferior growing up. That because they couldn't hear they were less than. The use of Cochlears and hearing devises just made them feel worse. Like they were only "normal" if they had a way to hear. They could only become successful if they could hear. This is not true! To take a motto ive seen used quite often on these forums: DEAF CAN!!! "Why wouldn't you want to hear." This statement is very insulting to the Deaf community.They actually wouldn't. They Are very proud of being Deaf. They see implanting a child as taking away their birthright. Their right to their language, The right to their community, and their right to feeling they were born the way they were supposed to be.

    There's more to it than just that. Reading the books and pamphlets I received from many different organizations also scared me. Stories of kids not receiving implants and resenting their parents. Stories of kids receiving implants later in life but absolutely hating the therapy and brain mapping that came with it. Stories about how painful it was. One person described it as feeling as if something was burning a trail right into her brain. Terrifying for any mother to hear!! Then there were stories on how exauhsted these kids were. Because hearing with this is work!! Its not normal hearing like we have. they actually have to concentrate very hard and become physically exhausted and drive some to actually hate their implants and never wear hem again! Stories on thearapist advising parents to keep them on day and night. Telling parents ASL will hinder their progress. Stories where parents followed this advice and when some grew up and decided not to wear them, or something malfunctioned, had zero way of communicating with them. There is soooo much more that I cant even begin to explain so those were just a few main points.

    So... Im sure you can see what side I was leaning to. I didn't want my daughter to ever feel like I didn't think she was good enough because she couldn't hear. I wanted to have 100% communication with her at ALL times. I wanted her to feel as perfect as she is to me. So my decision was made. I'm not implanting Celina until she can ask for it if she wants it. With this decision I knew it would make therapy harder at an older age, but had decided to give her the right to decide for herself.
   
     Then I met My Deaf mentor. We'll call her A. There was one night that I asked A what her opinion was on Cochlear implants. I was shocked to learn that she had them!! She got her first side implanted when she was three, and her other a few years ago! She was very strong in her opinion on them. "cochlears are a tool! they don't "fix" anyone." She went into how her parents went about the Cochlear process. How they would let her decide if and when she wanted to wear them. After school she would take them off. How kids need a BREAK!!! How she still needs a break! and she still wears them only about half the time. How you still NEED ASL. This changed everything for me. I was seeing it!! I was seeing how someone took the middle ground and made it work!! THIS is what I wanted!!! THIS is how it should be!!! I could implant Celina now, making therapy easier for her, while still giving her the choice!!! I confided in my concerns with A about therapists trying to force us to stop using ASL or making her wear them all the time. Her response was "bottom line, your the parent YOU get to decide if you want to stop those things. They cant make you do anything!"

   So last week we had an appointment with the audiologist to re-fit Celina's hearing aid molds. While we were there she brought up Cochlears and said we should get started with the process if that's what we were going to do. I SAID OK!!!! So april 22nd Celina will have her first consult!! Soon we will know IF Celina is a candidate for them! If she is, she WILL be getting a cochlear! Celina will have the choice to wear them or not. ASL WILL still be her language (along with english). Celina WILL feel loved. She WILL feel good enough. She will NEVER feel "less than". I just ask you all to PLEASE remember; this does not "fix" Celina. She is not broken. This is a tool that she is free to use as she pleases. This was a very emotional post to write. I just want to make the right choices for both of my kids and I hope I am doing so.

WOOOHOOOOOO!!!!!!

   So after 3 looong, very stressful months of waiting, agonizing, and feeling like my insides were going to explode due to stress and frustration, Celina's Insurance is back on!!! Its been a long day of scheduling appointments!! Next week she gets her long awaited blood test by genetics!! she also gets her hearing aids re-molded the same day!! She hasn't been able to wear them for a month now due to being too small. I'm waiting on a call back to schedule her Nephrology appointment for hypertension (high blood pressure) so we'll have answers for that soon too!! yaaaay!!! Then at the end of the month she has an appointment to look at her spine and hips to see if she has scoliosis and hip dysplasia. GAAAHAA im so excited to get back on track and get some answers!!! Thought and prayers for good news please!! :D Felling pretty positive at the moment!

Not too much to share...

   Hey all!! I Know its been quite a while since my last update. Unfortunately that's because I don't have any new info to give medically. We're STILL waiting on insurance to come through!! One lady who's trying to help and knows the ins and out says its time to threaten. Thankfully she just went ahead and did that for me. I PRAY that it finally comes through because this is getting ridiculous!! Stressing me to tears!!

   Anyways, Therapy is still going fantastic. Celina is still behind but she's progressing so thats a huge plus! Also last week She got her first tooth!! Shes getting way too big way too fast!!! We also met our Deaf Mentor 2 weeks ago. Shes great! I was so nervous that I was going to sign something wrong or offend her in some way. Thankfully it went well and she even complimented our ASL!! yaaay! Our only glitch the first meeting was Eli peed on her. OMG!! seriously!!! I was mortified!! He had climbed onto her lap and was sitting with her and peed!!! He does quite well with going to the toilet and I could not believe it!! She was so good about it though. I still cant get over that one... LOL. Also Celina is now starting to recognize a few signs!! HUGE deal over here!! I'm beyond ecstatic :)
Sooo.... That's about all we've had to share. Just wanted to let ya'll know we're still kicking along and doing well!! :D hope to have a "real" update soon!!!

Thank you...

Thank you god for giving us such a blessing.

Thank you family for being so extremely supportive. I honestly can't thank you enough!

Thank you Ryan for being the BEST husband and father we could ask for. I love you more than I could ever show you.

Thank you Lacie for being such an amazing friend and sounding board. Even when you have your own life crisis' going on. seriously. THANK YOU!

Thank you everyone for your prayers.

Thank you Celina for showing me life through new eyes.

Thank you to all Celina's Therapists for working so hard with us.

Thank you NP for teaching us Sign Language in your own private time.

Thank you god for giving me perspective and a positive outlook.

Thank you parents of other CHARGErs who have reached out and advised me and provided support through this journey.

Thank you to my wonderful Mom and Mother in law who take time out of their day, and days off work to be with me during appointments so I don't need to be alone.

Thank you Eli for being such a good sport. You're so understanding for only being 3. I love you buddy!!

Thank you Cindi for everything you have done for us.

Thank you everyone for every word, thought, or comment of support. We cant thank you all enough!

Today I,m feeling blessed and thankful. So thank you ALL so much! even seeing how many people read this blog makes us feel supported. We appreciate you so much. THANK YOU!!

So far this year...

   Hey all!! Its been awhile since my last post. Sorry about that, we didn't really have much going on, so yay!!! No news is usually good news! We had a very good Christmas and new years! Hope you all did as well! we took a break from ASL classes over the holidays and we're now back at it! My family is really catching on fast and i'm so proud! :) We're still waiting on some things to be straightened out so Celina still hasn't had her blood test yet. Definitely a bit frustrating!! What do ya do I guess...

     A few updates with Celina. I'll start with the good stuff!! She now recognizes the sign for "milk" and when signed to her, she expects a bottle promptly! haha! It's quite cute actually!! She's also coming along sooo well in therapy! Just a few weeks ago she had VERY little head control. Now shes holding her entire upper body up all on her own!! She's come leaps and bounds in such a short amount of time, It just blows my mind! Shes getting way to big too fast. I feel like if I blink i'm gonna miss something. The first few months of her life has been sooo hectic and a whirlwind that I feel I've already missed so much! Definitely soaking everything in while we're sitting here with our hands tied, waiting to be able to go to appointments. Gotta find the good in every situation right?? I feel it's the only way to make it through.

    So about a week ago I was giving Celina a bath and noticed her spine felt weird. I checked it out in many different positions. Sitting, Laying flat, curled in a ball, and standing. Her spine looked and felt completely crooked. Just looking at it I could tell. So, not wanting to over react and to make sure I wasnt just crazy I called LH over to look at it as well. She agreed it was curved. My sisters also agreed. The Following Therapy session I had the Physical Therapist look at it as well. It's a definite "c" shaped spine. So we're working on exercises to keep her muscles from shortening on one side. Plus side; she's young and babies bones are "soft" so no need to completely freak out quite yet. Scoliosis is also connected to CHARGE so.... there we go. Celina's hips also constantly (and I mean constantly) click and pop in and out of place. So her PT said she will sleep in a hip brace that will hold her hips in their sockets as she's growing and it will hopefully resolve the issue. I believe its called Hip Dysplasia??? I could be wrong. Other than those two things, Celina has been great though!! hoping this is a trend in the year 2016!!! Wish us luck!! :) :) :)

Genetics appointment. **sigh***

  Yesterday we had Celina's first long awaited Genetics appointment. Instead of answers we now have many more questions. Yaaay.... (insert sarcasm here) I probably should have suspected this. I was just so sure in what I believed to be correct.
  So Dr. S started by asking all about family history, history of illness etc. Asked many questions about how shes eating, growing, development, medical diagnoses, all that good stuff. Then he looked miss Celina over.
  Dr. S then started informing me of her facial features that could possibly relate to a syndrome. Her  forehead being square with the Knobs on either side. Her mid-face being sunken in. Her Mouth small. Cleft lip, Not necessarily small or retracted chin, But something a little off about it, Droopy eye... I think that about covers it. He then started ruling out certain conditions/syndromes based on those and her other impairments/issues. I brought up CHARGE syndrome of course and he doesn't Seem to think she has it because her ears physically look normal. Instead he wants to look at 22q deletion Syndrome. Also called;CATCH22 Syndrome, Digeorege Syndrome, del 22 Syndrome, VCFS, and there are a few other names but these are most common. Del 22 is actually very similar to CHARGE. They both have a lot of the same presentations.

Left 22q deletion              Right CHARGE

  Ok. So this is where I get super confused. Celina's main Issues are presented more commonly in CHARGE vs. the 1% a few of them are presented in 22q deletion. Coloboma as the main example. How can you dismiss CHARGE based on the look of her ear, when there are some CHARGE kids with normal looking ears, its just not very common, around 1-2%, to then dismiss the Coloboma also only 1% in del 22? Especially when she has more CHARGE symptoms vs. del 22 symptoms? From what I've seen in looking up 22q The 1% of presentations of coloboma were iris colobomas. Celina's are Retinal. I of course sent MH from the CHARGE foundation an e-mail and asked these questions. Her answer made me feel a bit better. Im going to post what she said vs. trying to explain it! lol.

 

  This makes complete sense to me, BUT my gut is still telling me CHARGE. Maybe i'm in denial? I suppose I'm no doctor so we'll just keep going forward with the testing. Dr. S said If this is ruled out we will proceed with the more in depth CHARGE testing.
 We were supposed to draw blood for testing today but ran into a snaffu with our insurance. So once that is up and going smooth again we need to go back in for blood work. Everything should be straighten out within a day or so thank goodness! The blood test for this is thousands of dollars so they decided to wait just to be sure so we're not stuck with the entire bill ourselves if for some reason it wasn't able to be straightened out. YAY for more stress!! (you know what to insert here. yep. sarcasm.)

  So. Del 22 Syndrome. I'm not liking it. Basically its exactly as its sounds. the/parts of the Chromosome # 22 are missing. It can be passed down through genetics or more commonly just happens. I've done some research and based on what I've found so far it scares me more so than CHARGE does. Some of the issues presented with this are;
      -Immune deficiency
      -Auto Immune disorders
      - Psychiatric disorders: Schizophrenia, OCD, Bipolar, Anxiety, Depression, ADD.
      -Autism or autistic behaviors
      -Seizures
      -Kidney abnormality's
      -Learning disability's
      -delayed growth
      -Thyroid/Parathyroid/Calcium issues
    There are more but these stood out to me. Also I saw something about some people with del 22 having tumors on their kidneys or thyroid. Some have lymphoma or leukemia. Also there is a higher risk of Hodgkin's disease. Yikes! I'm not putting too much into this tho given its not a "common" symptom in del 22 patients the chances/risks are just higher. But then again if Celina does have del 22 and is the 1% with Coloboma..... anything is fair game.

 Why this scares me more than CHARGE:
I personally would rather have a physical disability vs. psychiatric. How scary to be stuck in your own mind? To feel hopeless? To have that sort of pain and anguish? I wouldn't wish that upon ANYONE! I was briefly diagnosed with bipolar disorder, but found my thyroid was actually WAY out of whack and the hormone imbalance was actually what was causing my severe depression and anxieties. I also have some family members with psychiatric issues and it's definitely not easy. Remembering my own feelings before we knew what was going on... Its not even explainable. Horrible feeling. Then there's the stigma. Yes there are people who just get meds shoved at them for every little thing. But this doesn't mean everyone is just pushed meds for no reason. Some people actually believe this. Because of the med pushing for any and every little thing, people now don't take those with a mental illness seriously. It's an actual real chemical imbalance in the brain. No amount of "eating right", exercise, "manning up", or "thinking positive" is going to pull someone with this chemical imbalance out of it. (It might briefly help. But the issue is still there.) Especially when your so down and trapped in your own head that the thought of going to the doctor for help worsens the anxiety! ! Ok im gonna stop the rant right there because I could go on all day about it. Maybe another time. I just really don't want this for my baby girl. My heart hurts just to think about it. On the other side tho, its so hard to diagnose and find the right meds, so a lot of it is trial and error. Sometimes the meds your taking/trying make things worse. Its just an all around bad time.
    I don't know a whole lot about immune deficiencies. I guess what springs to my mind when I hear it is. Weak or lowered immune system=sick more often. So that scares me as well.
    I just really hope this isn't what she has. So what if it turns out I am in denial. Im entitled to that for now right? Its all so scary. All of it. Even if its CHARGE its scary. I try so hard to understand. To understand her issues so that I can prepare myself for her life. To take care of her in the best way possible. So much so that I forget to actually live life with her. To do that I need answers. I feel like were stuck in this endless pit of questions. It so extremely frustrating. I just want to know. I want to know what to do. What can I do to prepare for her as she goes? I feel so lost and helpless. I can sometimes feel it in my chest. It feels like its literally imploding . Like heat starts from the center of my chest and rapidly grows and feels my chest is going to fold into itself. I hurt for her. I don't want Celina to have to deal with any of the hardships she is sure to have. I just really don't want her to have this. I worry about accepting this if it is our answer. But at the same time I don't want to force myself to accept it when we don't have a definite answer. I already thought I had a definite answer and look now. I pray if it turns out she does, I'm able accept it. Please pray I will be able to as well.

***I didn't go over and re-read as I usually do. I couldn't bring myself to. So if there are a lot of errors or if it doesn't make sense I apologize. PLEASE feel absolutely free to ask questions! (especially if I wrote it in a way that it doesn't make sense.)
 

It's the little things that push us through :)

   Aaaahhhh! I'm like dying of cuteness overload right now!! So I was playing with Neeners (Celina's nickname) and kissing on her fat lil' cheeks, when she giggled! the cutest little giggle on the entire planet!! I'm swooning! lol I know this may seem like its not THAT big of a deal. But this was her first giggle ever!! With her developmental delays and hearing loss, Its something I wasn't expecting to hear for quite a while. One VERY happy mamma right here. :D

  Earlier in the week, I think it was the day after my last post, A genetic counselor, who is also a founder of the CHARGE foundation, Got in touch with me. First we e-mailed back in forth. Sent her pictures of some of Celina's features and then she called me. We chatted about Celina and CHARGE syndrome for well over an hour. We discussed all of Celina's major Issues and the minor ones as well. MH (CHARGE genetic counselor/founder) was soooo informative! I learned that based on Celina's Coloboma, Heart defect, PDA, and Cleft, She has a definite clinical diagnosis of CHARGE. Not maybe. Not what if. They can (and most likely will) diagnose her before they even run anymore tests. What I had thought was, the test would give us a yes or no answer as to whether CHARGE was the answer. Turns out this is not the case. Just like any other "symptom", for example, Some CHARGE kids are deaf, some are not. Some have Breathing issues, Some do not,  The mutated chromosome is also just a "symptom". Only %60 of people who have CHARGE test positive for this. Here are some of MH's Exact words:" By "clinical definition" on paper, she already fits a definite diagnosis.  But we always want to take a look at kids - syndromes with similar features have a different "look." ". She then asked for pictures, which I sent, And when on the phone told me she doesn't have the "look" she was talking about for other possible syndromes. Which tells us CHARGE is the most probable diagnosis. My gut tells me this is 99.999999% correct. I'm Just so sure. I cant explain why. I just am. Everything just fits so perfectly into this diagnosis. I've already joined some online support groups that MH suggested. And reading all those experiences just cements it for me. A lot of the CHARGE children have more issues than Celina, some have less. It just makes so much sense. This HAS to be what Celina has. 

  Thursday we have our long awaited genetics appointment!! I seriously cant wait! I cant believe how long the wait is to get into one!! We've been waiting over a month!(Funny thing, MH actually personally knows the geneticist at Children's) We will finally have our answer. Though I feel I already know our answer, We will finally have a confirmed answer. I do wholeheartedly believe they will clinically diagnose her that day.  

   While I'm happy to have (or should I say will have?) answers, and the wondering is over for me. I'm still sad. I think those I'm close to get the impression (of no fault of their own. its how I hold myself to be perceived) i'm fine with this answer. And while in most ways I am, Deep down there's always that seed of hope. That maybe this is just a weird fluke. Maybe it isn't any sort of syndrome. And now that seed is gone. And I grieve. I didn't want this to be our answer. I wanted a different one. I just knew better. I still hoped though.On the other side of it I am so happy to now be able to move on. To now worry about whats BEST for Celina vs. Whats WRONG with Celina. We get to move forward in taking steps to give her the best life we can! While I'm sure there will be many bumps along the road. I'm happy to move forward instead of questioning everything. 

  Thanks again everyone for your thoughts and prayers. I cant thank you enough! If you could please continue to do so!

Here's a link to the CHARGE Syndrome foundation. Take a look! Very Interesting!
www.chargesyndrome.org?

Dont know why half of this is highlighted but I dont know how to get it off.