To be her voice is my honor and privilege right now. I truly thought she would be talking by now, I truly though she would be eating by now. But she is not doing either. So I will continue to press on for her. As the result of some very screwed up insurance rules and regulations, for several months Lizzie went without the multiple therapies she desperately needed after our move from Lackland Air Force Base to Washington DC. Same military? Yes. Same health care system? Yes. Different region of the US? Yes. Same special needs? Yes. Same orders from the doctors? Yes. Supposed access to some of the best health care in the world? Yes. Government handling of health care at it’s finest? Yes. Did my daughter suffer because of this “region change”? Yes. Does it infuriate me? Yes. Did I do everything in my power to ease her transition. Yes. Was I assured it would all be ready for us when we arrived. Yes. Was I mislead? Yes. Have I had to step back from blogging because I find my free time filled with begging/searching/settling for and filling in for therapy that just wasn’t cutting it? Yes. Do I wish it all turned out differently? Yes.
You see, Lizzie is doing much better from an overall health standpoint, but she still has a very weakened immune system. She catches everything, so we have to be careful. We have been blessed with a nurse who loves Lizzie and helps me in ways I cannot express. We have a house full of medical equipment that has on more than one occasion kept Lizzie out of the hospital. I am so thankful! So you can understand how I have been hesitant to complain about what we are not being provided. Something about not looking a gift horse in the mouth. With flu and cold season behind us, we’ve started taking Lizzie to a therapy center . Lizzie needs feeding therapy daily, speech at least twice a week, and occupational therapy twice a week as well. We are there, a lot, but we are having to settle for less. In San Antonio all of this was provided in home, but this was not possible in the DC area. I have been told that the rules have recently changed, and we can now receive in home therapy and keep our nurse. I am thankful for this, though now we have to start all over again… We have to find therapist that will accept our insurance and do home visits, again.
I got riled up yesterday as I called the pediatric specialty clinic where Lizzie sees her developmental specialist. The phone was answered by a woman who clearly didn’t care to help or even listen to my reason for calling. “No I cannot connect you…” and “what do you think we’d tell you ‘no we don’t have qualified nurses here to stick your child?’ Ma’am, nobody is going to say that even if I could connect you.” I mean really, why? Why be rude to a parent who was just trying to ensure the best chances of success for their child’s blood draw? Lizzie has an appointment next week with her developmental doctor. He ordered tests in November to be ran, tests that might give us a little understanding to the “why’s”. Why Lizzie doesn’t eat or talk, and why her heart and lungs are the way they are. The last time we were there they were unable to successfully draw blood from her, anybody who has ever cared for her knows what a difficult stick she is. There is not a place on her body that hasn’t been poked. I simply wanted to know if the one gentleman who had successfully drawn blood on her in the past happened to be at work that day. Turns out he wasn’t. But we went anyway, maybe I was being unreasonable. Maybe her veins miraculously healed or changed or something…
My sweet girl, bravely sat in my lap and didn’t fight at all. Her little lip poked out and her eyes filled with tears, but she sat still as they looked and looked. They knew nothing about who she was or where she’d been. One nurse in particular talked to me like “one of those moms”. Maybe I am, but I am not ever going to be quiet when it comes to my kids. I sat patiently and hopeful they would find a vein. They stuck, and dug, and dug some more. All while the one (well intending) nurse tried to explain the complexity of the venous system, and then proceeded to tell me how next time I should call in advance and they could put a patch on her to numb and heat up her veins. She proceeded to unsuccessfully dig in Lizzie’s arm. I am a nurse, I understand she is a hard stick. I understand and expect failure, but do not tell me what I should have done when I DID call in advance. And at that moment, Lizzie looked up at me, mind you she does not talk other than the occasional babble. She desperately said “momma” in her quiet raspy voice. In a way that clearly said “please make them stop hurting me”. It was only one word but it might as well have been a thousand. I have never experienced anything like that with her. I instantly told them to stop. They did and she rested her head on my chest while she quietly whimpered. They looked but didn’t stick again. I asked for an anesthesiologist, a picu/nicu nurse, a medic, anyone. They assured me they were the best in the hospital (the man who did draw successfully doesn’t work there anymore). We were told to take her somewhere else for blood work. We left with no answers, again.
That pretty much sums up her treatment here. The Lizzie cha-cha continues to a different tune. I will say her pediatrician and specialty doctors have all been wonderful, it is just a matter of getting the orders carried out. It feels really good to get that off my chest, I have wanted to keep all the negative to myself. But I know everyone wonders why and wants an update. The whys may never get answered, but we will not stop fighting for her even when we are tired. As her daddy put it, “if she doesn’t overcome these delays it won’t ever be from my lack of trying to do all I can for her”. We get weary and want instant fixes, but that doesn’t get us very far. So we will celebrate Lizzie’s small victories and continue to love her more every day.
Y’all, she is funny! She is feisty. She tells herself “no-no” and gets tickled over the silliest things. She makes air now when she jumps. She walks in grass (but not barefoot). Oh my gosh, how she loves to swim! Lizzie is really good at peg puzzles and has taken a liking to writing on herself with Sharpie. She puts her hands on her hips when exasperated or when she sees me exasperated. She mimics me and my mannerisms all the time. She and her brothers some how managed to fling chocolate pudding on my kitchen ceiling (it’s still up there). She has learned to use the remotes and is the master of the iPhone. She loves her some YouTube wheels on the bus, Baby Einstein, and Wiggles . She loves her Minnie Mouse, Bald Baby, and blanket. She truly loves the Sound of Music and Mary Poppins, two things that make my heart rejoice. And she LOVES her some Disney Princesses and Mickey Mouse Clubhouse. She can say go, bye-bye, no-no, ball, dada, baba, momma, uh-oh, help, uuuuhhhh, and ffffffff (fish), tu-tu (turtle and maybe Taylor), La (Luke), and shhhh (though it comes out as “whooo” with her finger to her lips). And sister can sing! Well, she sings “ooooh ooooh oooh” to all songs. She has started making purposeful constant sounds. She also does an amazingly realistic pig sound, moo, and roar. She picks up very quickly on signs, she does most of her communicating with sign language. She signs for no, thank you, please, more, momma, daddy, love you, help, swim, eat, elephant, spider, chicken, monkey, baby, ball, play, finished. If she doesn’t have a word for it she grabs you by your hand and drags you to whatever she wants. She knows where most of her body parts are and will follow most commands. We feel she understands almost everything we say to her. She has definite opinions on what she wears. She shakes her head or grabs for whatever article of clothing she decides on. She also seems to want to eat. We sit as a family every night and I put food in front of her, she generally plays with it and moves it from her plate to bowl or throws it on the floor. She will nibble on a chip or goldfish but generally spits anything with texture out. She will drink small sips from a cup or spoon. She often grabs a pudding cup, baby food, or a jar of nutella along with a spoon and brings it to us. We celebrate those moments. Keep in mind her eating is very infantile, she can’t seem to figure out how to chew. She sticks her tongue out and lets you place food on her tongue. If it ends up in her mouth typically depends on whether it is chocolate or not. She’s my girl.
Every day there is a little bit of progress, we hope and pray for a good report at each cardiology visit. She does need to be seen more frequently due to increased pressures showing up on her echocardiograms. We expect a cath in the near future. At that time they will likely also take a closer look at her lungs to see how they have strengthened. We have her weaned off almost all of her respiratory support (except while sleeping or sick). Sometimes she gets a little blue still and sometimes she asks for her oxygen. We let her take the lead. Really it has been so cool to see her grow and change from baby to an actual little girl.
Enough about all that… Want to hear something really really cool? Lizzie was nominated and selected for Make-a-Wish. A fellow heart momma and friend, Charity Hodges, went out of her way to contact Lizzie’s medical team in San Antonio and with the help of our favorite Child Life Specialist, Brittany, got the ball rolling. Until this point we always thought only children who are “terminal” were able to participate, but it is actually for any child diagnosed with a life-threatening medical condition (Lizzie has had her share of those). We felt awkward about accepting the wish at first, and sort of still do. Lizzie has been through so much and has many more battles to fight ahead of her. And her brothers, they have fought a brave fight right a long with her. Never once did they complain about the time we were separated, they only wanted their little sister well and home. We are honored and humbled by this opportunity, especially since we are in no position to do anything like this for our kids after the crazy of the last few years. Gosh, when the Wish Coordinator called to ask for information on what we will need at the location, and to give us the details on flights and lodging I nearly cried. I seriously called the lady back just to tell her how wonderful it felt to plan something besides an appointment or procedure. I realized how truly wonderful the wish experience will be for the entire family. To know everything is taken care of is such a welcomed breath of fresh air for this momma. So what did Lizzie wish? Where are we going next, you ask??? We’re going to DISNEY WORLD!
Countdown To Disney
Touch the Sky is working to support the adoption of a girl who was previously advocated by the name Tamarix. She is a bright, beautiful 12 year old little girl from Xi'an China who is deaf. She loves to draw and the orphanage director says she often draws picture of a family. She very much wants to be adopted and wants a family desperately. Go to their page to learn how you can donate or buy a t-shirt/tote bag to support a grant that will allow a family to bring her home.
Three years ago our lives changed forever. In a little room in China we were handed one of our life’s biggest blessings. Instantly all the fears and worry of “if” and “how” we could handle such a uniquely, yet beautifully, complicated little wonder vanquished. In that...read more
MEET WISH KID CAPTAINS SUSANNA & LIZZIE
Susanna and Lizzie will be among our six wish kid captains leading the efforts at this year’s walk! Susanna and Lizzie have received their wishes and are now helping to ensure that other children with life-threatening medical conditions receive their one-true-wish.read more
LIFE IS INSANE. Sometimes you just have to laugh to keep from crying. I’ve taken a bit of a break from social media but felt like sharing this. Maybe it’ll make someone smile. Here are some things I’ve found myself saying recently around my house, to my children AND spouse. Enjoy.read more