Mr. Winks and Co.

Yes, yes I have been posting all of these ridiculous pictures of our new dog Mr. Winks; he doesn't officially become ours till Sept 15th, but in Caitlin's words "Hes already apart of our family".  We weren't looking for another dog, but here's the story. 

It started out with us going out to get a few things, and then seeing that PETCO had adoptions every Saturday and Sunday. Of course Caitlin and I were the first to run in and look at all the adorable dogs and kittens that were needing foster home and ultimately adoption. I have this annoying urge to help anyone and anything if they are in need or if they need people to help with something, and I happened to come across 2, 9-week old chi weenies. They were adorable and after the rescue, Diamonds in the Ruff Rescue, explained to me that with fostering that they paid for everything, I thought, "WOW! I can help and actually just donate my time!" So I made plans with the lady, Robin to come back that evening and pick them up and take them home. 

Around 7pm when I was almost to the parking lot, she texted me and said that the chi weenies were getting adopted; I was really sad, they were so cute, well behaved and sweet. So they asked me if I would like to foster a different dog, and at first I wasn't so sure, but then I thought about all those dogs there that aren't the "popular" dogs or the "cute" dogs and realized I needed to help one of them. 

After explaining to the head of the rescue, Gayle, that Jasmine as a 55lb ball of energy/lap dog, she suggested Wink. There was this little tiny black and white puppy with a little under bite and the cutest ears, staring at me wagging his tail, and I knew I had to take him, especially after hearing his story.

He was dumped on the side of the road at a few months old, and someone found him and took him to a shelter that is now shut down. That shelter, refused to treat him for the viruses and diseases that they caused by not taking care of him properly, and because of the sickness he had, they were going to euthanize him. Upon hearing about Wink, Gayle ran straight to the rescue and saved Wink from death just hours before he was set to die and took him to her organizations shelter were they had vets on staff who nursed him back to health. He spent the next few months in the kennel because no one else could foster him and he was getting adopted because he wasnt a designer dog...no one wanted a pug/terrier mix. A person came into the shelter and decided to become a foster, but the very next day brought him back because he was "too energetic". 

That was the day we came in. So after talking to Gayle,  we brought wink home, but first Caitlin decided that his name needed to be Mr. Winks. Gayle also informed me that Mr Winks had never had a home, never snuggled in a bed, and never rode in the car without being in a crate.

Well the ride home should have told me why Mr Winks always rode in a kennel lol. Upon the ride home, I had my sister, and her best friend in the car as well as Caitlin and I. I told my sister she could role the window down just a little since he seemed to have horrible anxiety in the car and was running around like a crazy pup. He turned my blinker one, windshield wipers at one point, and rolled down windows with his tiny feet. Well I don't think my sister knew what a tiny bit was because the next thing we know, we are waiting at the front gate of base, and out the window Mr Winks goes.....Marley and me style. So my sister looks at me and yells "MRRRRRR WINNKKKKKSSSSS!" and flies out of the car to get him. I think we all about peed our pants that evening. 

After we got home, I was nervous about what Stephen would say because he was completely against fostering and thought I would try to keep the dog. Well needless to say, 1 hour into Mr Winks being home, he said, "That's it we are keeping him." I couldn't stop laughing at the fact that he was so attached after watching Jasmine and him play. But he was happy and that was all that mattered. 

Mr Winks is settling in nice here now and he loves snuggling up with anyone that's up for it, and has adapted so well with a life with Jasmine which those of you who have met her, know shes a little psychotic. He whoops her butt on a daily basis, and is not only a perfect dog for us, but has calmed Jasmine down enough to were she doesn't need to be crated anymore when we leave. It makes me happy that as of now our family is complete. I don't know how we got so lucky with 2, perfect for our family rescue dogs, with so much love, energy and snuggles for our little family.

The Dash

At my Little Grandmas funeral last week, my Aunt Frances read this poem. It is one of the most beautiful poems I had ever heard, and it honestly made me want to live my life better. Its been a hard couple of years for me, and for my family, but I printed this out and hung it in my closet, so everyday I can read it and be reminded of my dash in my life.

The Dash Poem, by Linda Ellis

I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning to the end

He noted that first came the date of her birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash?

Family

I am having a bit of a hard time coming to terms with the fact that my Little Grandma is no longer with us. Its not so much crying, as it is me thinking about what else we could have done for her, to keep her alive. I think, "Maybe we should have put a pic line in", or "We should have gotten her out of Summerfield Nursing Facility faster than we did", or "Maybe we should have kept her in the hospital and cleared up all her infections", and "What if we just made her eat a little bit more". It's all a moot point now, but it bugs me and bothers me that all the "what if's" come up after she is gone, and I know in my heart of hearts that her quality of life would not  be good.

We all thought she was going to pull through though, when she came home from that stupid god awful nursing home, she was so happy and strong. She was playing cards, asking for pancakes and mashed potatoes, ginger ale, water, and magic milkshake, which just so happened to be what Caitlin used to take through her tube. She kept telling me, "I'm so happy", everyday. Her life was her family; her kids, her grand kids and her great grand kids. She was surrounded by so much love every single day, and so much more in the last week of her life, that I almost feel like she was truly at peace. I dont think any of us said "I love you" more than that last week, although we knew but still had hope that she would rally. She did for those 2 days, and I remember looking at my dad and we were both in shock at how great she was doing, and we all had smiles on our faces. But I think I should have listened to my mom at that time when she said that it was great she was feeling stronger, but that there's a lot of ups and downs, and she wasn't out of the woods just yet. I think my hope got the best of me. I wanted her to be okay so badly; for me, for my family, for my daughter, and for her to stay alive to keep enjoying her family.

This last week was exhausting, physically and emotionally for all of us, and I feel like we worked so hard to be around her, make sure she was comfortable, and okay, and making sure she had everything she needed to get better, and I feel like we all got gypped. Not because of the work we did, but because we did everything right and we still lost her. I just dont understand.

The night she passed was a surprise to me and I think the rest of my siblings as well. We were in the pool taking a break, and planned on driving down there after we were done, when we got the call from my dad that we needed to get down there right away. I dont think I have ever moved that fast in my life. The car was quiet the whole way down, and I think we were all thinking the same thing, but continued to have a little hope because she had been doing so well.  We got there and were told the situation, and we all got ready to spend the night at my aunts house where Little Grandma was, because none of us wanted her to be alone. My Grandma actually asked to have all the kids there, so it was a little weird of her to ask that, but of course we were there. We got to spend some time with her, tell her we loved her over and over again while holding her hand and brushing her hair back with our hands. Then after we all had time to talk with her, she went to sleep, and she never really woke up. It was like she knew, and she was happy, and she had everyone she loved around her and she was okay with that.

There is something about being with a person as they take their last breath and it is an intense experience. Its horrible, sad, angering, and I couldnt understand how one second earlier she looked like my little grandma and the next moment she didnt. I dont believe in god, but at that moment it was like her soul went out of her body, and just went somewhere. I know that sounds confusing, but I cant describe it. But also at that moment, I knew she wasnt in pain anymore, and we know she'd been in pain all of her life, so it was also comforting to know that she was around all of us, and she wanted us there when she went almost to show us that she was truly happy now.

On Fathers Day, my Little Grandma came over to my parents house, and she was so happy. She got to watch her newest and favorite great grand kid, "Small" Steve, swim in the pool with his great uncle, and watch all the grand kids having a blast. She got to see smiling faces, feel the sunshine, be with family, and even nap poolside in her wheelchair. That is going to be a great memory for our family to remember.

I feel like I just went to a funeral when Popee died, and now I have lost my Little Grandma, my last grandparent. I am tired of losing loved ones year after year, and I know, its life, but I just feel like in the last 10 years there has been deaths every single year, and it just weighs on you after a while. Especially if you haven't dealt with one before another one happens.

I am very lucky to have the dad and aunt that I do, because they want all of us kids to help plan the service and be involved with everything that is going on, and I think in a way it will help with the closure. I keep thinking that is bringing our family closer together, I just wish it didnt have to happen this way.

I apologize if me writing about this in such detail offends any of my family members, that is not my intent, it helps me grieve by writing things out and sorting out my feelings.

All I can say is cherish your families; your grandparents, your aunts and uncles, your cousins, nephews and nieces  mothers and fathers, sisters and brother and so on. You never know when "that day" is going to come, and I dont know about you, but I will waste no time telling them all how much I love them, and enjoy every possible second with them.

The Calm After the Storm

Well its been a few days since I have posted, we have been settling back into our lives here at home, and are struggling a little with keeping up the feeding schedule with Caitlin. I find that I am constantly worried about if she ate as much as she did in the hospital or if shes eating the right things, and wanting to count calories. But I know that I just need to let it flow and she will eat at the times we specify.

I thought this was going to be a little easier to settle into, but in the hospital I guess there was no real distractions, no cooking, cleaning, going to the store, soccer games, karate or school. Now I have to figure out how to balance everything that I do with everything that she does, as well as continually watch her because she wants to sneak food. Her eating times are 8am, 10am, 12pm, 3pm and 6pm, and a bedtime snack if she asks, and I still manage to miss those times sometimes and then have to adjust her eating schedule.

Shes holding steady at 39.6lbs only 4 oz less than the hospital, so I'm hoping I am doing a good enough job of helping her succeed in her eating. I am a little discouraged though, because my support from the hospital is gone and I guess I felt "safe" having them there with us during the meals, and now I feel a little overwhelmed with this responsibility. Its hard for me to admit that, but its getting frustrating for me.  I have all the tools, and I try to use them as much as I can, but its so much different at home with the hustle and bustle of the home life.

At school today she told me she "lost" her bag of snacks for snack time, and that means she lost about 200 calories out of the day. She ate pretty well for lunch having a pb&j, danimals yogurt, jello snack pack, banana and a juice box. Tonight she ate pork chops, mac "n" cheese, and some sour dough bread with butter, and a side of lemonade. Of course she had ice cream for dessert.

We see the feeding therapist on wednesday so hopefully I can gain some insight into the issues that I am facing. Maybe I am just freaking out over nothing, maybe I'm not, but I think I need them to give me some peace of mind.

Final CHOC Update: Headed Home

I am pretty sure I had my number days mixed up, because it was 19 days and somehow I just miscounted. Oh well. Tomorrow will be day 19 and our last day at CHOC, and I have to say I am a little sad about leaving, but I guess thats what happens when you are there for so long. The team has been pretty fabulous to us and to the mission Caitlin had, which of course was to get her tube out. Technically today we weren't supposed to weigh her but my curiosity got the best of me and she was 18kg which is 39.6lbs, and I have no doubt tomorrow that she will hit 40lbs. I know thats not a huge deal, but she looks so healthy now, and her behavior has even started getting better as far as temper and anxiety, which is a huge plus. I know my relationship with her has changed a lot in the last 19 days, and its amazing how much closer we have become.

This morning, we had our first real family meal together, where we weren't directing her or arguing with her, she just sat, ate and talked to us like normal families do, and my husband and I couldn't believe how far she has come from the first day here.

Its going to be really weird getting back into the groove of our life and not counting calories or weighing her everyday. But I just cannot wait until tomorrow when we can go pick up Jasmine, drive home and toss every single thing that has to do with g-tubes, like the 35 cases of formula, all the boxes of pump bags, two pumps, 3 IV poles and on and on and on. That is going to be the best feeling in the entire world to know, that she will NEVER need that again.

She has gained so much self confidence through eating and through the positive reinforcement that she gets from all of us when she is trying new things or chewing the right way. She has retained so much information and I am so proud of her for being self motivated to eat, and to hear her say "Mom, I never knew there were so many foods that tasted so good!", just melts my heart. We beam with pride at every meal when we see her take the initiative to eat something we only asked her to take a few bites from, or like tonight just scarfing down ravioli like no ones business, without us even having to ask.

We always knew we had a pretty awesome kid, but I am really touched at how many peoples lives she has touched just by being here and being herself. So many people have come up to me and said that they will never forget her, and are sad to see her go, but happy because that means she did what she needed to do.

I am going to be forever grateful to CHOC and the feeding team for allowing us to participate in something so awesome and for teaching us how to teach her how to eat. I cant wait for our first meal at home and to actually sit as a family and eat. Its going to be an amazing feeling.

Thank you all for your support before and during all of this, it really means a lot to me and it really helped me to know that people were pulling for us and wanted Caitlin to succeed.

Tomorrow we will be having our last meals here, and having one final meeting before we leave, and I have a feeling I just may cry. I didn't when she got the tube out, but I think it was because I was just so happy that I was relieved that we no longer had to deal with it. But I think knowing that I probably wont see them again, and that they gave Caitlin a new life and did so much for her, its going to be hard to say goodbye. I wish I could make something for them or do something to let them know how much we appreciate them.

That is all from CHOC, and I look forward to seeing some of you when we get back :)

CHOC Day 15: "Hey, I Got My Tube Out Today"

Best words ever to come out of Caitlin's mouth. Today was an emotional day for all of us, she got her tube out and was so excited about that every person that she saw today, she lifted up her shirt and showed them her "smooth" stomach and said, " Hey, I got my tube out today". She was so proud of herself and multiple times today she told us, " I am so happy my tube is out, and I have a smooth stomach.", and "I cant believe I got my tube out! I am so happy about that!"

We are so proud of her and all that she has gone through in her little life, and now, its over. Its really over. Theres no more we can do to help her be "normal", she is normal now and its an amazing feeling to know she is going to live a long happy healthy life and she doesn't have to depend on a tube to nourish her.

I don't really have a ton to say tonight, we are dealing with a family emergency that I don't care to go into, but I ask that as you have supported me in Caitlin's endeavors that you keep our big family in your thoughts if you could.

CHOC Day 14: Closer to Normality

THE DAY BEFORE WE LEFT FOR CHOC

For Caitlin today was about deceivement, cuteness and how much she could get away with because today was Stephens turn to be the leader in feeding therapy. He actually did a really good job leading the meals, he has this gift of being able to talk to Caitlin to get her to forget that she is actually eating. They talk about where the food shes eating comes from, or how yogurt is bacteria, or which animal her meat is from. I think she throughly enjoys talking about it and learning about her food and how its made, and I think it helps her understand more and helps her eat.

TAKEN TODAY

It is funny to see how she reacts when I am leading and when Stephen is leading though. With me she doesnt mess around, we have a little bit of fun with our food, and it gets done fairly well. With Stephen, lets just say she has him wrapped around her little tiny finger, and found a way to try and negotiate with him, and try and be cute in order to get what she wanted. It was a little funny, I must admit, it was comical to see her tell her dad to "look over there" and then dump part of her meat out when he fell for it lol. I am proud of the control and the patience that he had today with her and eating, it can get really frustrating at times.

Tomorrow is the big day and her G-Tube comes out. Its amazing to me that all of us as a family were able to learn this together and help make the g-tube coming out a possibility and a reality in her life. Tomorrow is going to be the first day of the rest of her life, where she can wear a 2 piece bathing suit and not worry about people looking at her like in past years, and also the one piece not having anything poking out of it.

I no longer am going to have to worry about playing with her a little rough or picking her up and something catching on her tube, or anything. Its a very exciting feeling to know that the day you have been waiting for since she was born, is finally here. I think back on the 6 years of medical crap, hospitals, testing, and I just cant believe that this really and truly is the LAST medical thing that we will have to do with her. As of tomorrow she will be "normal" by society's standards, and I cant wait to see her beam with pride at the fact that she accomplished such an amazing feat.

The other thing I cannot wait for is Friday when we get to go home, and I get to clean out her room of every medical thing possible. Bye bye extra tubes and syringes, bye bye IV poles, bye bye feeding pumps and backpacks, bye bye 35 cases of formula and bye bye getting monthly shipments of formula and supplies. I just cant wait. I am going to be bawling through all of it, just knowing we will never need it again and that she can eat like a normal kid. Amazing.