We have so much to be thankful for this year. Although we have had hiccups along the way with illnesses in 2013 we have made it to the end of November without any (dare I say it) major medical issues like last year! A couple of hospital stays here or there, some infections and a few surgical procedures but nothing as scary as what 2012 brought.
We have made so many new friends and have spread the word about rare chromosome disorders. We have been blessed by complete strangers, who we will truly never be able to show our thankfulness to. Violet is gaining weight and growing like crazy! Even if the charts & numbers dont really show it her clothes do!
We have been able to get some amzing equipment for her mobility and accessibility and will be fighting to get more.
I’m so thankful for today’s technology really. Without the advancement in health care I have to wonder where Violet would be…in an institution? Starving? Thinking back to a day where they didn’t have NG tubes or G tubes a child like Violet might not have made it if she didn’t eat. My life would be so empty without her. Although the late nights / sleepless nights are certainly getting old her precious little face makes my heart melt. When she looks at me with those eyes or when she is in a silly mood and enjoys being tickeled that smile & those eyes will get me every time! Or those sweet lips & peaceful look while she is sleeping. Those are the moments every parent enjoys & for that I am thankful. Even through the difficult days, I would never give up my life. This is the life I was given and for that I am thankful, 2 beautiful children, a wonderful, devoted husband, great healthcare providers, understanding friends & coworkers. It’s the people who stick by us through thick and thin and don’t judge us for what we have accomplished or haven’t done that I am most thankful for. In my books in the last almost 23 months we have accomplished a major lifestyle change! No one ever expects to have a child with special needs and we took this lifestyle and embraced it, everyday. How do we do it? Just like you…one day at a time!
Today we are thankful for a God who loves bigger than we can ever imagine, for all the people who have been there and supported us through so many trials, good times, bad times, our family for putting together the golf benefits to support Violet, the wonderful team of ladies and the community who supported her this summer. So many times we have said that Thank you is never enough…it always feels like it isn’t, but know we are thankful for you…for taking the time to read…care…pray…love…support our family…our sweet Violet.
If you haven’t ever gotten the chance to meet her I hope someday you do…she will bring a smile to your face and a memory you will always have…Thank you
I have been away for quite a while. What’s new with Violet? So much, yet nothing at all. I have been deep in my thoughts but haven’t felt like sharing either. I write so many blogs really…in my head. They never make it to the keyboard.
I’m so grateful for all who care about our dear sweet Violet but I will be the first to admit, sometimes I just want to live my life….but tonight I am in a very content mood to share.
So Violet has FINALLY received her kid kart. (That’s her big news) For those who are unfamiliar with what a kid cart is, it’s a specialize stroller if you will. It’s sort of a cross between a stroller and a wheelchair. It has accessories for both. We will be able to feed her with her pump anywhere as we have a iv pole attachment and it has a canopy for when we walk and the sun is out. It tilts into different positions, it has a tray she can use to play with toys. It’s REALLY exciting. I will now become a minivan mama tomorrow. If you would have seen me trying to shove the base for the kid cart in the front seat of the Saturn you would realize just how excited I am!
Therapy news: Violet is drinking a few sips from a straw and testing some solids with a spoon or an oral toy we have called a zoli brush. Those are huge milestones for her since she had pretty much quit taking anything orally. She was having a few issues with her belly and her feedings earlier this week after we increased her calories. Still not sure what that was all about or if it is over but today we introduced her formula again at a lower rate and so far so good.
She is starting to sit a little better and we are working on standing with her leg braces. Some moments are better than others. We played a little game of peek – a – boo that slightly helped today.
Now that the seasons have changed I am reminded of the simple things in life that we are to be thankful for. One that strikes me every time I put Violet to sleep is the ability to pull my covers up to my neck and keep warm. Just keep warm in general. Violet has issues keeping her body temperature so at night if the blankets wiggle just enough and she catches a draft she is waking up. Not needing to be up but just cuddled and warm. While looking at her peaceful sleeping face melts my heart I wish I was in my warm bed with my cuddle buddy.
I can never say it enough but we are so blessed to have the wonderful people around us that we do. Thank you all so much.
Well, even though yesterday’s news was stressful on mama I feel so much better today. Dr Weddle took my old tubes out of my ears and I can relax and am at peace. I even played in my mats tonight. Mama said I had to play quietly because daddy wasn’t feeling good and he went to bed very early. After playing for a while mom put me in front of the window to look outside. That’s what I miss the most about our new house. I used to look out the patio window all the time. I really like being outside and watching the outdoors. Then after a while of watching the front yard I played in another one of my mats while mom folded some laundry and Grace played with her magnetic dolls. Mom was playing for a while too but she needed to get the laundry folded. Then it was time to eat and put Grace to bed.
Mom was excited and so was the Yvonne from Dr. Weddle’s office because I was in a much better mood today than when they saw me with my favorite audiologist Nicki yesterday. Yesterday I just did NOT feel well at all! But I got good sleep last night–mom did say she gave me something to help me relax and take away my discomfort — I didn’t mind because I just need to sleep to feel good sometimes too!
I know mama is worried about me getting more ear infections without my tubes because I did so well with them. It didn’t matter what season it was I was getting ear infections before I got my tubes. But I am going to try my best and hopefully we will have a healthy winter season!
But I suppose I better get to bed so mama can go too. She is on her own with me tonight since daddy doesn’t feel good. Hopefully he doesn’t share this with me or Grace or mom – mom’s not allowed to get sick! She is TOO busy with work and taking care of me and all my stuff. Especially now that I have therapy weekly!
Have a good night!
So we have been battling a few things with Violet lately. While she has had a few nights where she has slept all night long I almost feel like this is a curse. She is not feeling well. The girls have a cold. Mine is better, Grace is a little better now it has hit Violet. I fear the only reason she is sleeping is because she is not feeling well and it’s her bodies way of trying to feel better. The other more prolonged thing that we have been battling is her ears. We have been watching her left ear for a while, the tube had moved and it seemed like she was constantly pushing at that hearing aid — now right ear is plugged and the ear tube is falling out.
Tomorrow we will see ENT and probably get the tubes taken out the rest of the way so they stop bugging her. Then we need to discuss where we go from hear. I did discover that there is another kind of tube they can put in – this one is supposed to last a little longer. I knew when we got the tubes there was 1) No guarantee they would work at all 2) They may not last long -they could fall out at any time. I know I should just be grateful for how long they lasted and the fact that we haven’t had to deal with any ear infections while we have had them but we are heading into cold & flu season without ear tubes on a child is historically had a ton of infections.
I feel defeated, frustrated & sort of tired of doctors…I know…NO time to get tired of doctors but seriously! I don’t see this being a good time for ear tubes to not work! Why is it every time something starts to go right for baby Violet…something else happens?
I just continue to cling onto my verse…He has a plan…a plan greater than all this…but sometimes I just get so annoyed!
I am so tired of people who really don’t have a clue as to what I go through on a daily basis trying to pretend like they care or understand…YOU DON”T HAVE A CLUE! (Disclaimer: not saying everyone who I encounter I feel this way about – but there are some people I just want to punch in the face – yes…anger stage of grieving) Because right now… I HATE HOLLAND! My little mystery baby who no one has the answers for anything. I don’t have the answers. There was nothing I could do today to console her and those are the days that I hate the most.
If my day with Violet wasn’t enough then something happened with Grace and she was disappointed with a situation and that breaks my heart too. It was nothing we could control but still hurts.
But tomorrow is another day and we will go to bed and wake up when we do and start all over, because that is what we do. We don’t hold onto the disappointment or frustration…just get up, pick our heads up and move forward. There is no really reason to hold on to what we can’t control.
It’s been far too long since I have updated on Violet. Recently we got over another UTI, an ear infection (yes, I said ear infection) One of her tubes has moved and our audiologist noticed and we discovered why we thought the antibiotic wasn’t working for her UTI – it actually had nothing to do with the antibiotics not working for her UTI but instead that she was on the wrong antibiotics for her ears. Once we got the right antibiotics she was doing much better.
We have started her on cranberry and put her back on her probiotics to hope that someday we can get things back in order with her system and not be on long term antibiotics.
Her leg braces came in! We got these to help straighten her legs. She also will be getting a piece of equipment called a stander and this will strengthen her legs in hopes to help her walk someday. She has been loving playing in the jumparoo. It’s o much fun watching her in it!
She has started outpatient therapy so everything Thursday we go for speech and physical therapy. We still have Occupational therapy through a program called Birth to 3. We love our OT, Deb, but just needed more time and focus for the other therapies.
Violet continues to grow like a weed. She is in 18 month onsies and 12 month pants! I can’t believe it! Love it!!! She is getting so heavy to carry and I can not wait for her kidcart to come in so I can stop having to carry her everywhere!
Thank you to everyone who loves and supports our family! We are so blessed to be surrounded by wonderful people, who support & encourage us. Look after & love our children. Thank you….
Seriously! poor Violet has another UTI. Poor kid is on antibiotics to prevent these things and she continues to get them. Once we treat this one we are really going to decide where we are going to go from here. I really don’t know what to do anymore. We have a few friends that have mentioned some different “alternate” medicines but I am nervous about them. No real regulation, no real information about dosage / interactions. It makes me nervous to give them to my “special needs” child. what is a parent to do. I am so tired of her being on antibiotics and her gut issues with that but what are we supposed to do…try to convince a doctor to try alternate medicine, get in on her care plan and hope we can get reimbursed for the non covered meds at the end of the year.
Poor baby, her bottom / back / belly hurt from the UTIs but then her new ear molds don’t fit right either…luckily for us we have an amazing Audiologist who always fights to get molds that fit. We aren’t really sure how they can make them right sometimes and they fit great and others…they don’t. how is it so difficult?!?
On other news…Vi is developing really well! She got a really good report card and I think she even surprised some of the therapist! We are going to start more intensive physical / speech therapy through Aspirus. I am kind of excited about this since she is doing so well, I wonder how she will do if we expect more from her.
On the home front. We will be officially moved into the new house by Friday. Grace is really excited about her room and we have been blessed to have people help get everything ready from curtain making, painting, carpet installer coming a day early all the little details that fell together.
I am excited for Vi to have her own room too since I think she might sleep better. Still concerned if too much room is not going to be a good thing but we will see!
So it dawned on me that I never gave an update here as to how Violets procedure went. She did fabulous! She has a bit more drainage than shedid with the other tube but I called the doctors office about it they seemed to think it was normal. Her biopsies came back normal so that is good too. She never missed a step and is her same oldself.
Thank you so much for all your prayers and support. It means so much to us.