Sunday, December 7, 2014

On the morning of Friday, October 24, 2014 Faith’s nurse, Amy, was just getting Faith out of bed around 7:15am. Amy yelled out “Ashley, come look at Faith’s eyes.” So, I went into her room to take a look at her eyes.They were not tracking the same. One eye was looking one way and the other, the other way. I didn’t think to much of it because it was morning and things like this happen all the time. Many times, with Faith, something will not be normal in the morning and then later that day everything will be back to normal. I was going out of town for the weekend and so I had Mic to come and check it out since he was going to be in charge of her for the next few days. Fast forward to about 4:00PM the same day. I called Mic to check in and he told me that Faith was still not tracking and was more drooly. Then there was a short silence. And I said “What else?” I could tell there was something he wasn’t telling me. He said “Faith has stopped smiling. She is unable to smile.” I said “You had better call the doctor and tell her just to keep her updated.” Mic called and they ended up going to the ER at Children’s Mercy Hospital Friday evening. Faith’s doctor was concerned there could be a shunt malfunction. At the ER, Faith had some xrays and CT of her head. All was well with the shunt. The ER sent them home.

Monday, October 27, 2014 Mic and I went with Faith to a routine doctor visit with the Endocrinologist in Kansas City. This appointment had been scheduled for months. As we were leaving the Endocrinology office, Faith’s primary doctor at CMH (children’s mercy hospital) called and asked if we were still in Kansas City. She asked us to come to her office at the hospital so she could get a better look at Faith and hopefully to get her in for some more testing. When we got there the doctor was looking Faith over and asked “When did she stop blinking?” Mic and I had no idea that Faith wasn’t blinking any more. The doctor admitted Faith to the hospital for an MRI and requested the neurosurgery doctor look it over.

Tuesday, October 28, 2014 MRI complete

Wednesday, October 29, 2014 Neurosurgery talked to us and said he wished Faith had a “healthier spine”. Well, we all wish that. He didn’t say much more. He did say we will just have to wait and see if she gains her control back in her face. Complete side note: She knows when she needs her nose or mouth suctioned or wiped off. She can feel her hair on her face. But she can’t smile, blink or move her nose. To me totally weird.

Friday, October 31, 2014 I got a text while at work from Faith’s nurse saying, she can’t wake up Faith from her nap. Fast forward about 30 mins. I went home and when I got there Mimi and Papa (Doc and Phoebe) were there.

This day was Amy’s (Faith’s nurse and Best Friend) last day with us and my parents came over to tell Amy goodbye. They didn’t know Faith wouldn’t wake up. But Faith is totally in LOVE with my parents and she woke up at the sound of their voices. Amy has been with Faith for 3 years and with Faith being 3.5 years old it’s a big deal that Amy is no longer with us. :( I am still having a hard time with no Amy. She became part of our family and one of MY dearest friends. She wasn’t just a nurse to me she was my helper. She treated all three of my kids as if they were her own. She didn’t take care of just Faith, she took care of all of us. I never had to doubt anything she did or her question her judgement on anything EVER. I miss her SO much! Amy moved to Washington State to be close to her father. She has a new job being a nursing director and I’m sure she is Amazing!

It is now December 7, 2014 and Faith has gained some control in her face. Her right side is better than her left. She is now able to wink not blink but wink her right eye on command. It’s so strange that someone can wink but not blink. I am still learning new things about the human body almost everyday from this girl. She is pretty much base line (back to her normal self) other then her face muscle control. She is back to being her cute sassy self.

Tuesday, April 29, 2014

New Found Freedom

There has been a lot going on in Faith’s life good and not so good.  Well I will just be touching you up on the latest.   We have been waiting on a wheelchair for her for a while now.  First we had to wait on the insurance then we ordered it and it takes about 2-3 months to come in.  But we got it and Faith loves it!  It has opened a new adventure for all of us.  She has never had to “stay with us” in public places because she has always been in our arms or in her stroller.  Also new to her is hearing “you can’t go over there” and “wait for us”.  So interesting that all this is new for a 3 year old.  I just love seeing her in it!  One more small step closer to her being more independent.  I am very ready for this independence.  I remember when she started crawling EVERYWHERE I love it!!  Below is a video of Faith on day two of her wheelchair.




I am going to change the subject a little and say that I look at my life after I was married but before kids and think I am so blessed to be married to my best friend.  Wow that was 10 years ago and here we are still totally in love and still Best Friends.  I wouldn't be able to do to my day to day things without this man in my life.  Oh how I love him.  Then we had Mason and I thought if Mic is half the Dad that I had growing up then Mason will live a life better than most.   Mason is my tender hearted, helpful, loves others more than himself, soccer player boy. Here we are 7 years later and WOW, Mic has been a wonderful Dad!!  (Well of course no Dad is better then mine ;) ) Then we had Elizabeth and I thought I am so excited to had a girl with the challenges that come with that.  I hope and pray that I can be my daughters friend as my mother is my friend.  Always there that no questions asked.  Mic got his princess, ballerina, soccer player.  Being a father to girls is a fine line of not meaning to push them away but letting them know you are always there for them.  Mic is the best dad to Elizabeth.  She is a special little thing.  Then we found out I we were pregnant once again and decided to not find out the sex of the baby.  I thought I wouldn't be able to handle this but it ended up being a blessing.  We went in for monthly sonograms  in KC at a specialist and they never told us what the sex was.  Then came delivery day and it was the one thing I was looking forward to, the one thing that was going to be for sure.  I was going to find out the sex of my baby.  I wasn't sure if this baby was going to survive the delivery, but I would get to find out the sex.  Then before the Doctor was able to say the sex for sure Mic saw it and leaned down and said, “Ashley it’s a girl!”  one second later the doctor says “It’s a girl!” .  I started to cry.  I  was not able to see or hold my baby and I knew that was going to happen, but I had no idea it was going to be so hard to see her in a little bed next to me and not be able to really see her.  She was on her tummy with a gigantic hole in her back.  And that is where the adventure started with her….  And here we are today,  Mic and I still together and more in love than ever before!  I will repeat myself and say He is my best friend the one and only I share my true self with the one and only who knows me better then I know myself sometimes.   Why did I share all that?  Because Jesus loves us more than we can even grasp, more than I love my children or my husband.  Crazy to think about.  Would you die for your family?  Your response of course is yes but if some stranger had a gun to your head it would be a little more real.  Would you still do it?  I remember hearing about a story where the grade school student was in the school where the shooter was and she was proclaiming his name and the shooter asked her do you love this Jesus?  She responded yes i do love him.  He shot her.  She went down Loving Jesus to the last second of her life.  I just pray that I would do that and that my kids would too!  Who ever you were you made an impact on my heart and where her parents are Jesus is soo proud of you!  


Wow that was off subject but I guess on my heart.

Having Faith has been wonderful.  I look back over that last three years and think about everything I have learned medically and how my perspective has changed on so many things. What, you don’t like it when your child won’t stop talking, talk back to you, or won’t stop screaming because they aren't getting what they want?  I would LOVE her Faith to say one word with her sweet voice that I know is in there somewhere.  One word!  That’s all I want, one word.  BUT then I think about all the women who can’t have their own baby, or lost a baby and in that moment I praise Jesus for giving me a warm body that smiles at me all the time to hug.  Yes I get frustrated because she can’t talk but I know I am blessed with what I have!! 

Monday, April 21, 2014

A couple weeks ago Faith got her big girl bed!! She is so proud and is doing great in it!!

Sunday, September 1, 2013

Recap to Updated

When Faith was four months old we had her trach placed. She started having these pass out spells. At the beginning the spells were of course scary because they weren't "normal" pass outs. We had LOTS of people giving us advice on how to get her to stop from passing out. The number one bit of advice was to blow in her face and then she'll catch her breath. The only problem with that is you can cover her nose and mouth because she breaths through her trach. So the blowing thing doesn't work on her. The doctors and specialist at CMH (children mercy hospital) haven't even see anyone have these pass out spells at A)this young of an age and B) drop her oxygen levels so fast. The doctors had to call the manufacture of some of the machines they were using on Faith to get approval because they had never been used on newborns before at CMH. Little did we know these pass out spells were going to be the worst of all of it. When Faith was a newborn to age 2 (in December 2012) her pass out spells were not good, they have never been good, but they were always quick-pass out come right back. During a pass out she stops breathing, skin color changes then she takes a breath all in about 1 min. Then she is back to normal and playing. CRAZY right!?! Well, that's her life since 4 months. Now sometimes she will go days or weeks, without having a single spell. But on other hand some days she will do this 4,5 or 6 times a day. Up until now the pass outs have been quick, of course I was SOO worried about her. Why is she doing this? Not a single doc then or now have an answer. Now she has grown the spells have started to get more intense. Some of her spells her hearts stops beating (we feel her chest, no beat, we listen, no beat) she ALWAYS turns color, blue and gray skin color (maybe a little too much info, but like I said I have been living with this for 2 years) NO ONE should EVER see a child especially their own child GRAY. Faith sleeps with the ventilator at night and naps. So now when she passes out we put the vent on her and also extra oxygen. She has even passed out while on the vent-which sounds crazy to me! But nothing surprises me with that girl anymore. Before we had the vent at home we would use the ambo bag (like mouth to mouth but for a trach). The vent is nice because you just turn it on and attach it to her and you don't have to worry that you are pushing to much air into her or pushing the air in to fast to end up hurting her lungs. They are little lungs, they can only hold so much. :) We now have our vent with us all the time, everywhere we go. Faith doesn't care where she is, she will pass out anywhere. We always have to be ready. She has passed out many places, library, church, restaurants, parks, stores and of course doctors office. The CRAZIEST thing to me is that she is the happiest little thing all the time except when she is passing out. sounds crazy right, its true though. So now you are probably thinking what gets her to pass out?, right?? Remember she is 2 1/2 years old so there's the fits of not getting what she wants. She can't speak and only knows about 50 signs and that's a lot of sign but not enough to tell you why she is so mad. And of course there is the pass out that we have no idea why. So nut shell 1.doesn't get what she wants 2.Plain Mad at you. 3.Way too tired. 4.no idea. Sometimes (more lately since she has been growing) her pass outs are up to 4 mins with no breathing. There are many times Mic, Amy (Faith's nurse) and I are guilty of thinking I think this might be it. But normally right when we think that Faith takes a breath. Mic and I joke that Faith has FOR SURE seen Jesus for how many times she had these spells. Please pray for Faith and her spells. Also pray for my other children Mason Age 6, who helps me with Faith when Amy and Mic aren't around. He has seen way to much for a 6 year old. Pray for Elizabeth my 5 year old. There are a lot of things that go on with Faith that I wish Mason and Elizabeth didn't have to worry about or see. They are really good about having patience with her and accepting her the fact that their sister can't talk or walk. Elizabeth is our sign language interrupter. She is a pro! :) Sounds silly but if you are ever around and can't figure out what Faith is saying ask Elizabeth, she'll know. Thank You for all your prayers!! Mic and I are very blessed to have a wonderful support team! -Ashley