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

Tuesday, June 11, 2013

sammie dawn photography

Faith's Best Friend her nurse Amy!

Turning a Leaf

We have been through tough times since we last posted. But the bright side is that, that tough time is over and we are seeing some progress!!! First, Faith has started to be interested in crawling!! She wants to be where she wants to be. :) Let me tell you what I mean by crawling, army crawling, dragging her legs. Her legs aren't strong enough for her to be on all four. Crawling is wondering! She still needs help actually moving, we push her bottom VERY little and she is off!! This is a BIG milestone. People don't understand that you have to move her every inch she wants to go. She can't move on her own really at all. So I am VERY excited about this! In this process of learning how to crawl she has been learning to also spin on her bottom, which she is becoming a pro at!! Also getting in and out of sitting by herself. Lots of Physical Therapy! She is getting stronger everyday! Today 6.11.13 we made a trip up to Children's Mercy for a swallow study. This is once again a BIG milestone appointment. If she fails this there can't be another study done for 9-12months due to the radiation she is exposed to. Faith has been only getting her nutrition (milk) via her g-tube (feeding tube placed in her tummy) straight into her stomach. We started about a couple months ago intruding foods like applesauce, BBQ sauce and other foods at the constancy but she would FIGHT us and pucker her lips together like no ones business. Well that wasn't a good sign. So one day about a month later we started again she was a little into it but not as much as she needed to be (we were using a spoon to feed her). Then one day I came home from running around town and Faith's nurse, Amy said to me "well I was eating my chicken nuggets for lunch and dipping them in Ranch and Faith wouldn't stop watching me. So I asked her if she wanted some ranch and she said yes (using sign language) so I got her some ranch and DIDN'T use a spoon". With NO spoon she has been eating like a champ!! So today was the test and for the FIRST time since Faith was 3 months old she had a DRINK and it was with a REAL CUP!!! I couldn't even believe it and neither could Mic!! My Faith was using a CUP!!oh and taking a DRINK!!! Oh Lord you are so good to us!! Her feeding therapist said the test went much better then she thought it was going to go. That was a good sign! There are three different thickeners to use Honey, the thickest Syrup, the middle thickness and Nectar, the least thickness. She passed with using Nectar!! They also said Faith needs to work on learning how to get the food/drink in her month to the back with using her tongue every time. She did really well but not every time. The more she eats/drinks the better she will become!! Bring on summer and lots of DRINKS!!!! :) Going to try to update at least once a month. Thanks for reading!!