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!