It’s been awhile…

I’m going to TRY to keep this brief because honestly, we’re still processing all that is going on. A lot of people have asked so I figured one post would be the best way to fill you all in. I’ll start with the fact that Bailey had a huge gap in in-person doctor visits because of COVID. She went a solid 6 months without stepping foot into a building, and doctor visits have been the extent of our adventures. Her team of doctors felt that it was safe to have virtual appointments only. Thankfully we met with them all the week before things were shut down. We hit the ground running with appointments and it’s been a complete roller coaster. Some good and some not. They found some spots in Bailey’s eyes which they’re calling lesions. Similar to the ones she has in her bones. They’re not concerned with them as long as they’re not affecting her vision. That was a big concern for us but has quickly become small. Praise Jesus! Since September she has had 11 appointments, 11 Treatments, 2 MRIs equaling 10 hours and a 2 night hospital stay for a continuous EEG. That last one, that’s the one I’m posting about. About a month ago, Bailey had an abnormal EEG, for the first time ever. Some consistent findings with Gaucher’s type 3, some not. Abnormal, regardless. We spent this past weekend in the hospital for further testing. With the episodes she’s had, and the results of the EEG, Bailey was diagnosed with a seizure disorder. Generalized epilepsy. There’s a lot more I just can’t get into. I’ve said it out loud so many times and it’s just exhausting. We have invested in equipment that we’re praying never has a reason to alert us and medication we’re praying is strictly a preventative. We were told to monitor her basically around the clock, at this point that’s something I didn’t need to be told.

I’m asking for prayers. Prayers for Bailey to continue being so resilient. That she doesn’t suffer from any side effects from the medication. That she never has a “clinical seizure”. That she is comforted by some divine peace because no 12 year old child should have tell their mom that she’s scared to go to sleep because she doesn’t want to have a seizure in the night, that’s some heavy emotions. Prayers for COMPLETE healing. We’ve made a huge commitment in providing Bailey with a medication that pulls us into a world we never wanted to be a part of. So many questions on the table. Ones I can’t bring myself to even ask out loud. Fear like we’ve never felt. I don’t how we got here. It’s always been that one thing that I witnessed people around us experience. That one thing that no matter what “text book symptoms” reported, Bailey was unaffected. Something that was just never going to be a part of Bailey’s story because it never had been before. Things can change so fast. Please pray for Jacob. We talked to our nine year old about things he shouldn’t have to know, but needs to know. He needs to help us keep Bailey safe. We know we serve a complete Healer and that He has big plans in store for Bailey. Please just keep her in your prayers. We’re living in a grey area in a hypersensitive state where we’re just grasping at anything remotely positive.

Case dismissed…

These are words I certainly did not want to hear. Some of you might be led to believe that because it was dismissed, there was no wrongdoing. Let me reassure you my friends, there absolutely was. In black and white, you could see a very specific marker of Gaucher’s Disease rising for years and no increase in the one drug that could bring it down into normal levels. That’s as much information as I need to know that he pushed us into this hole we have spent the last 2 years trying to climb out of. He also neglected to share with me the rising of the numbers. Appointment after appointment, we were lied to by someone we trusted, with Bailey’s life. A mistake I will never make again. I went into great detail about the neglect on one of my blogs in 2017, so I won’t rehash it all here. I wanted to share though, that our “case” has come to an end. It ended not in our favor at all, and I am not allowed to be given answers as to why, but in the big scheme of things, it’s the end to one of the biggest chapters of our lives. Believe me, as a mother, it’s an impossible reality to accept. To KNOW violations were found that they cannot disclose with me. My heart aches. I wanted justice, as if that were even possible. If I sat here and went over every detail of the last 2 years, it would eat me alive, and believe me when I say this, I totally could. As soon as I heard those words, my world was covered in darkness. Phillip was quick to remind me that this isn’t a place we can stay. We have to pull it together and move on. We have to remember that Bailey’s future, is what is most important. While he lost Bailey as a patient, and his part in her life is over, it’s not over for us. The case yes, but the not the fight with the disease. We can’t let our world stop spinning because of this. I’m trying really hard to see the positive in this finally being over, no matter what the outcome was. Two years of reliving the nightmare, hoping and praying he would lose his license, and now, we can finally move on. But we can’t. Bailey gets to live with the damage he caused every single day and I’m so freakin mad I could scream. I wanted him to hurt with us. See this is what I mean. We have to find a way to separate what she’s going through, with how we got here. I don’t know how to even begin. Looking forward, and never backwards. Moving on and letting go. It’s easier said than done. The “system” failed us miserably. They failed to be there for Bailey and I don’t want this to be the start of her having to see just how messed up the world can be. She deserves SO MUCH MORE! Unfortunately, the system probably also failed any current and future patients he might have with Gaucher’s Disease. Who knows, maybe he learned his lesson. Being the narcissistic, pathetic creature he is, I doubt it. I hope I never have to think “I told you so”. I won’t allow myself to feel like the time devoted to this, was a waste. We fought hard for a different outcome. I put every single thing I could into this ending differently. I can sleep well knowing that I put up the best fight possible for my daughter. I didn’t back down. I didn’t hold information back because I was afraid. I did everything in my power, to make sure that nothing like this ever happens again. I guess I will just have to find a way to live peacefully with that.

After speaking to the attorney that sat through the hearing with us, this is all I’m left with. Gaucher’s Disease is so rare that so few doctors can actually “specialize” in it, yet it’s ok that they continue to treat it. They do what is “generally accepted as the minimum one would do” in caring for patients with rare diseases. The minimum, her words. Bailey was given the minimum amount of care he could offer because that’s all he cared to give. My child’s life was on the line and he offered her the bare minimum. What a worthless piece of crap. My heart hurts. This is a constant uphill battle we have to fight because most don’t care to learn. I never want Bailey to have to mess with all this. She should be able to trust her doctors. It flat out sucks that she can’t. 

And then, in the middle of typing this, leaving the kid’s world completely untainted by all this mess, Jacob points to his green bracelet, the one we all wear for Bailey, and out of nowhere says, “Did you know green means hope?!” And just like that, I’m reminded by an 8-year-old and the color green, and that it represents hope and life, and the biggest picture of all the pictures in Bailey’s life, is just that. Her LIFE! She’s living and we still have a fighting chance at making her life and her quality of life improve. We didn’t really lose anything because at the end of the day, we have HER! God met us in the gap, right where stood, through the sweetest boy I’ve ever known, and Jacob has no idea. That’s powerful.

Thank you from the absolute bottom of my heart for riding this journey out with us. We appreciate every single read, share, like, and mostly of all, the prayers. Even through your silent prayers, we know you’re there. We feel it.

 

The Hearing

 

Today I sat in a room with Phillip by my side and made a statement in front of 8 complete strangers including 3 lawyers, a doctor, the president of the Texas Medical Board, and the doctor we’re fighting this battle against, himself. A statement that was completely unprepared because up until that very moment, I wasn’t sure I was even going to speak a word. I wasn’t sure what I’d say or if I’d have the strength to say anything at all. I made the conscious decision that if I were to speak, I was speaking facts only. Not my opinion, but actual medical facts that were printed right there in black and white. I went ahead and did myself the favor of creating bullet points of these facts so I at least had something to run with and didn’t freeze in the moment. My time was limited and I knew I needed to mention every single one of these crucial points. FACT: Bailey was given half of the correct dose for more than four years. FACT: Two of Bailey’s key markers for Gaucher’s Disease have come down significantly since we’ve taken an aggressive approach of getting her on the right dose. FACT: He lied to my face every 3 months when we stepped foot in his office repeatedly assuring me that all of her blood work looked great. It was printed on a graph from his office that her levels were climbing to dangerous levels every single time we saw him and still, he said they were all great. FACT: He was not ordering the standard tests that Bailey should have had done over the years. Her bones were in bad shape and we had no idea because he never even cared to look. FACT: Bailey suffered through something catastrophic and preventable because we trusted him. He failed us in every way imaginable. We didn’t know what we didn’t know. We were clueless to the things not being done because well, they weren’t being done. He should have known or he should’ve sent us to someone that did. Instead, he counted on Bailey to “put his kids through college”, his words. Today was hard. Phillip had to remind me to breathe and pull myself together. The room was silent and patient as I gathered my thoughts. Everyone except for him. He was uncomfortable through every second we sat in that small space together. We are fighting something huge and we will not know the outcome for months but I will continue to fight until I know there is nothing left to be fought for. I won’t back down. Bailey is worth every single bit of it and I will never let anyone be careless with her life ever again. I’m not sure I know exactly what I want to come from all of this because we are in a place I never knew existed. It’s a place I would never want to be again. The only thing I know for certain that I want to happen is that at the very least, that he keeps his guard up and never puts another family in this position. That he has some fear behind his decision making and that he knows behind every parent, there is a bear ready to be unleashed if their baby suffers from his negligence and carelessness. It was a hard morning but what I know is that Bailey is doing better than ever. She LOOKS better than ever. Her levels are steadily coming down and her bone marrow continues to show improvement. The president of the TMB seemed pleasantly surprised to hear she is doing well. Obviously no improvement would be proof that he was not at fault. This is all for Bailey. Every call, every email, every mile, every tear, it’s all for her. For her life. I love her SO MUCH! I hope she knows and understands one day just how precious she is to us. #BaileysBattle #iLoveYourFaceBaileyGrace #GaucherDiseaseType3

Kid, you’ll move mountains!

I’m at a crossroads and I just don’t know which way to go. I feel like a brat for even feeling sadness about having to make this decision. Vacation. It’s not something that everyone truly gets to relish in and here I am having a hard time trying to decide if we should go, or stay home. The walker and wheelchair has been a hard reality for Bailey to face. That’s an understatement. It has been pure torture for her. We have little pep talks when the walker or wheelchair will be needed (which is anytime we leave the house for the walker and any “long” distance, which is hard enough to gauge in itself, with the wheelchair) which tend to end with Bailey crying or just flat out deciding not to go. She is never just ok with using either. No matter how much we tell her we envy her for getting to be pushed around and not having to walk or how much we tell her that people are not starring, because once you feel like they are, they are. The conversations and tears are endless and it’s exhausting and I’d be lying if I said I made her follow the rules as much as she should. It’s her life. I want her to have some control. She is going to be responsible for running this show one day and she needs to feel what it’s like. I obviously put her health and happiness first but when it comes to the walker and wheelchair, it’s one or the other. Mental health is just as important as physical health. She has to find a SAFE balance. It’s hard. I can’t even sit here in say that I’ve never allowed her to stay home instead of forcing her out of the house where she would have to use some assistance. I don’t ever want her to give up things in life because of Gaucher Disease but again, sometimes staying home just really helps with keeping us all totally sane. It’s a hard fight and sometimes, she is just not up to it. Can’t say I blame her. We are in this place right now where Bailey’s bones are a big concern. We pray for them constantly. We have a potential vacation coming up this summer and we just can’t decide what to do. On one hand, I continuously tell myself that I should never allow this disease to hold her back from anything. I shouldn’t let it have that kind of power over her life. People have told me that I should tell her to decide and here is why that won’t work. The excitement of going where we are going and who we are going with will greatly surpass the anxiety of having to possibly use the walker and wheelchair when we get there… until we are actually there. And then it will set in. I would imagine that sitting in a wheelchair, in a swimsuit, to ride down to the beach would be something that Bailey would not want to do. Her mind is set on being the same. Inclusion. Not standing out. How many people should we expect to be on this glamorous island in a wheelchair?! Probably 0. Again, pretty bratty huh?! At least we have the opportunity to go. So, what if we stay? What if one day, she finds out that she missed this because of a decision I made because of her health? What if I make that decision and come time to go, she doesn’t need the walker or wheelchair? It’s too late at that point. What if we decide to go and she gets worse? What about her port? What if she were to run a fever in another country? How can I trust them to care for her? I have a hard enough time trusting people here. Would we be able to catch a flight to the states? What about her weekly infusion? What if we shift days and get her on a different schedule to infuse right before we leave and right after we return? How will that affect her body? Will it? Will it make her tired to push it a day at a time over the next few months? What if she falls? What if the airport treats her invisible illness like it’s nonexistent like the last one did? What if theyforce me to carry her past multiple terminals because she doesn’t look sick? What if the decision I make isn’t the right one for Bailey? I rebuke it all in Jesus name. The anxiety of it is eating me up and making the decision on whether we should go or not has proven to be more difficult than I could have ever imagined. I want so much for Bailey. I want her to live carefree and never to have to worry about whether or not her health is going to hold her back from going on a freaking vacation. I want her to go. I want to know that whether we decide to go or not, that our decision is a good one. I want to not go back and forth in my head every second of every day trying to convince myself that the decision I make has to be perfect because one little thing could make a huge difference. I want her body to be healed and not miss out on anything. It makes me sad to think of staying home and missing the whole experience but it makes me equallysad to think of going and her missing out on the activities. My prayer is that her body is healed and she can do everything she wants to do while we are there. If there is where we end up. The distance between blogs, Facebook and Instagram posts, texts on how she’s doing, the time where everyone goes on with their lives is where we live. It never stops. The worry never ends. And while Bailey is overall very happy, this part of her life, is hard. I would take it from her in an instant if I could. She deserves so much more. She deserves all the happiness the world has to offer!

Show me how big your brave is 💗

Over Thanksgiving break, Bailey saw her pulmonologist, hematologist, orthopedist, and had treatment. I asked for prayers for these appointments. Thank you so much to everyone for praying for our girl. I’ll start with the good news because the bad news is what’s kept me from sharing how the rest of her appointments went. Treatment was great, as always. The pulmonologist appointment was wonderful. This is the first year that I can ever remember that Bailey has made it all the way to December without a violent cough attacking and settling in her lungs. We have worked and planned very closely with a pulmonologist that is an hour away from our home and we finally, after many years of suffering and doctors telling us they couldn’t do anything more for her, have a plan in place that works for Bailey. She takes several preventative medications and we also keep some things on hand at home in case she des start to cough, we can treat it and kick it early. No more waiting. No more suffering with a lingering cough. A cough that lasts a week or two for us, would typically last twice as long for Bailey. Not anymore. Her pulmonologist is probably the most thorough doctor she has and I am thankful for him. For his passion to follow her so closely and check in when she is sick. For his plan to be proactive instead of reactive. For his guidance in making sure that insurance will allow us to have a very costly machine in our home so we don’t have to take that hour drive if she is sick. To sit and tell me where to get medications at a cheaper cost. He’s not money hungry which is not something you often see in doctors. He goes out of his way to keep us from having to make unnecessary trips. Even if she does need to be seen, and we are struggling to get out to him for whatever reason, he’ll have us go to another doctor. Not one that he works with either. Financially, he would benefit zero from where he tells us to go. He has been a huge blessing to us and to Bailey’s lungs. We are beyond thankful that she is doing so well. We used to watch her suffer monthly from coughing fits that often led to vomiting. I cannot truly put into words how awful it was and how sick she would get. I’m so happy that we have been able to stay on top of this! Her last appointment of the day was also amazing. It was with the hematologist. Her bloodwork was perfect! Her platelets are higher than any of his other patients with Gaucher’s disease and her hemoglobin has come up into normal limits since we started seeing him, last year. All great things! Bailey’s second appointment was with her orthopedist. The appointment we have been so anxiously awaiting. A few moths ago, Bailey was given a diagnosis of osteonecrosis in her right hip. Osteonecrosis is when the bone starts to die. Her right hip is not the side that was fractured but because her bones looked equally as bad as the left side, and very unstable, we made the incredibly painful decision to allow the doctor to place plates and screws in the right side, as well as the left. One of the hardest decisions of our lives. We did not make it on our own either. It was a decision that I wouldn’t go back to relive and make again for all the money in the world. Bailey’s bones were in bad shape. They needed help. They needed to not receive half of the correct dose of ERT for several years. The surgery was the start of the healing process with the increased dose of ERT and we were warned well in advance that bones take years to heal. YEARS! The osteonecrosis could be a result of many different things but the hope was, that when we returned in a few months, that it would have healed itself. That is not what we were told had happened. The X-Ray showed a little bit more damage and flattening of the bone. Terribly heartbreaking news. While we are so profoundly thankful that Bailey rarely experiences physical pain, emotionally, this has broken her. Anytime she has to use the walker, which is everywhere but home, she cries. Same with the wheelchair. The wheelchair is for long distances only. She is having a very hard time and there is not a single thing that I can do or say to take that pain from her. She wants to be like her friends. She wants to run. She is acting out and sometimes I will catch her carrying the walker or walking so fast, she might as well run. The noise it makes is not noticeable to me, or others, BUT Bailey hears it, and she hates it. Her hearing aids amplify the sound. She is still adjusting to being able to hear well. It’s loud to her. She doesn’t want people staring at her and she can’t seem to understand why something like running can be doing damage to the inside of her body when she can’t seem to SEE or FEEL it. Who could blame her? This sucks. It’s unfair and no matter how much she wants to be the same as other kids, she’s different. A lot different. Her life literally revolves around doctor appointments. The joys that she finds in life are based on safety and what’s best for her. Not what she wants. She is limited from so much, not only because of her port, but because a simple, minor fall, could make her hip collapse. How could I possibly explain that to her without scaring her? I almost have to tell her more than she needs to hear because she is pushing herself so far and stretching herself so thin that I am scared to death that she is going to do something that could cause catastrophic damage. She isn’t trying to hurt herself. She is trying to be “normal”. What can I even say to a 10 year old to help her understand? How can you tell someone, especially someone that has been through as much as Bailey has, that something that is causing her no physical pain, is potentially destroying parts of her body? How can I tell her that those things that she is choosing to do might land her in the hospital again with yet another surgery. I can’t. Because even with all of the restrictions and guidelines followed, things didn’t get better. They got worse. How can I make her understand something that I don’t even get. What would be the point? To her she just knows that she participated in very little over the last few months and STILL, things got worse. There’s not a lot I can do to help her right now. We are stuck somewhere that has no answers to offer us. We go back in February. If it’s worse, more restrictions. More walker. More wheelchair. Less use of that leg. And then we wait some more. I feel like all we do now is wait. We are literally making her wait on living the life she WANTS to live. We’re praying that it’s better. We’re also taking her to be fitted for a permanent wheelchair. We were so quick to send the first wheelchair back because we never thought she would need in again. We have a loaner for now and we are getting her one that is made specifically for her so she can be comfortable and if we need it in the future, it’s there. Because oh what a headache that has been. Please pray for Bailey, not just physically, but emotionally. It’s taking a toll on her once, carefree spirit. This stuff didn’t use to bother her and it’s almost impossible to watch. I hate it for her. I wish I could carry the burden for her. I’d take it in a heartbeat. On top of this, one of the doctors that used to treat Bailey, reached out to me again this week after being asked multiple times to stop and I can’t even respond to him because I don’t want in to hinder the investigation. Although I do have a draft saved for when I can respond. Hopefully it’s the last I hear from him. It’s like pouring salt in an open wound. We’re trying to undo the colossal amount of damage done, on top of just trying to move on with our lives, with an investigation still open, more than a year later, and then I see his name come across my phone. Gut punch. And then to not be able to say what I really want to a person that put my daughter in this position to begin with. Please just pray for Bailey. As hard as it is to ask, please pray for her to find some acceptance to the challenges that have been laid in front of her, at least for now. Please pray for peace and comfort. For her to have a fire lit inside her that makes her see what it is that she’s fighting so hard for. Quality of life. Pray that she sees that the more that she takes care of herself, the faster her body will heal. Even if we aren’t given those results as soon as we’d like. We know it’s coming. We know her body is healing. We know that it’s just taking time and that we are doing everything we can until she gets there. We know that the plan for our girl is BIG and this will be something small one day. Until then though, we need prayers to pull Bailey through this unimaginably difficult time.

Let’s talk about invisible illnesses…

 

One of the worst things you can do to a person that has an invisible illness, is make them prove that they are indeed “sick”. One of the worst things that you can do to a parent of a sick child, is make them explain to you just how sick their baby is. It’s exhausting.

 

You can’t tell, just by looking at Bailey, that she had a major surgery that kept her in the hospital for 2 nights and in a wheelchair for most of 6 months. You can’t see the tears that were shed over that chair. You can’t see the heartache on her face from having to use a walker when all she wanted was to run and play with her friends. The only positve to the wheelchair was that we didn’t get the judgement stare when using the handicap card. Her illness could be SEEN. She met the visual disablity criteria that society has created.

 

You can’t tell, just by looking at Bailey, that she has hearing aids in both ears. I don’t get as many looks when she raises her voice and her hair is up, because her hearing aids can be SEEN. It’s acceptable at that point because to the naked eye, you can see that she suffers from hearing loss.

 

You can’t tell, just by looking at Bailey, that she has had a total of 7 surgeries in her 10 years of life. The scars are covered in clothing and she appears to be very healthy. They cannot usually be SEEN. That should not take away from the fact that the do EXIST. I can tell her how beautiful she is until I am blue in the face and that her scars are a road map of her past but that won’t take away from the heartache she feels when she looks at herself in the mirror and sees multiple markings of perfect “imperfections” that remind her of so much pain. She is a warrior, and she is tough and MOST days, those scars are no big deal but every now and then, she’ll put on a sleveless shirt or a bathing suit and she will not be happy with what she sees. It truly is SO unfair.

 

You can’t tell just by looking at Bailey that every single Tuesday, she is stuck in her port to give her a medication that keeps her alive. Every Tuesday. At least 2 hours of her day every… single… Tuesday revolves around her receiving her infusion.

 

Bailey’s CT results came back yesterday. They did not see a fracture which is good news BUT they did see Ostenecrosis. This is devastating news. THIS CANNOT BE SEEN. You cannot see, from the outside, that Bailey has a bone that has something awful happening to it. Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The plan is to limit Bailey on her activities. Again. She can walk, but not long distances. She cannot run. She cannot jump. She cannot walk long distances. She cannot lift anything more than about 10-15 pounds. She’s 10. This isn’t like telling an adult this news. What Bailey hears is “You cannot run at recess with your friends.” “You cannot participate in MOST PE activities.” “You cannot jump on the trampoline.” “You cannot lift your puppy that you love holding.” “You cannot hold your baby cousins that you love to have sit in your lap.” And the list goes on and on. So yes, it is good news that there is not a fracture. But this is NOT good news. Phillip said it best last night. He said it’s like when Bailey was first diagnosed. They originally thought it was leukemia. Then she was given the diagnosis of Gaucher Disease. You could feel the relief in the room. Anything had to be better than that right? No one had ever heard of Gaucher Disease so it can’t be that bad right? And the response was “that’s great news”. But it wasn’t. I am not comparing the diseases. I am not saying one is worse than the other. I am just saying that neither diagnosis is a good one. Over the next 6 weeks we will be praying and we will be very hopeful that the next report shows healing. I won’t even cross the “what if” bridge.

 

We made a decision, one year ago, because there was so much damage to both sides of Bailey’s hips, that we were ok with letting the doctor put plates and screws on both sides. He believed that if we didn’t allow him to do this, that we would be back very soon witht the exact same problem she had with the left side and he would have to operate again. We did not want that. And knowing what I know now, I can sleep ok at night with that decision. The surgery was awful. The pain was unbearable and the thought of her going through that only to maybe go through it again only a few months later was just not something we wanted to risk. We were told yesterday that it is POSSSIBLE that one of the screws hit a blood vessel and potentially cut off blood supply to the part of her bone that is dying. I am at peace with the decision we made but to hear that is like a punch to the gut. The decision WE all made with a team of wonderful doctors could be the cause of this damage. It could also be just a symptom of the disease. There is really no way to know. All I know is that for the next 6 weeks, we will be on high alert. Our hearts will not feel any lighter until we see that her bone is improving. It is possible for it to heal itself so that is the hope. That is what we are praying for.

 

I know that it is hard to look at someone that is “sick” and be able to understand that, even though you can’t see it on the outside, their body is fighting a big fight on the inside. Please try to understand that many illnesses cannot always be seen. That does not make them less serious. Please try to find as much compassion for someone fighting an invisible illness, as you would for someone that you can visibly see how sick they truly are. It’s hard. I get it. Please try though because on top of BEING sick, no one should have to PROVE or explain just how sick they are.

 

 

A bad moment, a bad day, a bad week, does not make it a bad life. It’s still a good life and there is still so much to be thankful for!

 

This week is one that I won’t ever miss once it’s gone. It has been full of emotions good and bad. I know that most people have a specific day or time in their lives that comes every single year and as it approaches, they just wish for it to pass quickly. For me, that’s the month of June and the month of September. This is not to say that both months are miserable all month long. We actually have significant days that are very happy days in both months. My birthday is in June. I love birthdays. I’m someone that believes birthdays are a big deal for everyone at every age. June also holds a lot of heartache for us. It’s the month that I lost the man I loved like a father and it’s also the month that Bailey was diagnosed with Gaucher Disease. All 3 of these events take place within a 5 day span. So like I said, the whole month isn’t bad but when it hits, I know those two anniversaries are coming and my heart starts to hurt. September took that feeling on for the first time this year. Again, there are great things happening in September for our family. Our wedding anniversary is in September and we celebrate every year. We don’t just let the day go by and not make something of it. We are proud of where we are and it is worth celebrating every single year. However, this year and last year, again all within the same week, our hearts are heavy. Tuesday, when accessing Bailey’s port, I was a nervous wreck. We had not gotten blood return in 2 weeks and if this marked the 3rd time, she would need to be seen because that would mean something is definitely going on. Thankfully, Bailey’s port is just a stubborn finicky one and we got blood back!! So so thankful! That in itself made our hearts jump for joy! Later that day, Bailey had a hearing test done. Her hearing test showed a significant drop in just 6 short months. When looking at the chart and comparing it to the one done March, it was very obvious to me that IF this trend is something that were to continue, at this rate, it wouldn’t be much time at all before Bailey would lose all of her hearing. My heart was racing and my eyes were filled with tears. How could it have gotten this bad, so fast?! How could she have gone from being able to hear fine two short years ago, to steadily losing more and more of her hearing. I am begging, pleading, and praying that this is not something that will continue to get worse. She has had enough. This cannot be something else that she has to deal with. Please pray for her hearing loss to stop AND to be reversed.

Every school day, multiple times throughout the day, I think about the kids. How is their day going? Are they happy? Are kids being nice? Is Bailey being safe? Is she being included? I don’t want her to feel left out from anything. Her school days are a lot different from most other kids. She goes to two resource classes that both consume a big chunk of her day. She has to be quite a bit more cautious than than her friends when playing at PE or outside. She has to make sure that she is doing things that are not dangerous for her fragile bones nor her port. She has to make a conscious effort to decide what her body can handle when playing with her friends. That’s not easy for anyone. Especially a child that so desperately wants to run and play without having to take in the possibility of getting hurt. It’s not fair. With that being said, Bailey knows what is safe for her. We have discussed this MANY times and it is not an easy conversation. There is heartbreak written all over her face every time we talk about it. She holds herself together even though I am constantly reminding her that it’s ok to be sad about this. It’s ok to know it’s not fair because it’s not. This is not something any child should have to worry about. I know that she has to be aware of her limitations because SHE is the one that would be mostly affected if something were to happen. She is 10 though and she does still seek guidance from adults so I have been VERY clear with everyone on what she can and cannot do. I am constantly in contact with the school making sure they are aware of all restrictions and any changes being made, so imagine my disappointment when she hops in the car and tells me that she was playing a sport that is not safe for her to be playing and when mentioning it to the coach, he said she would be fine as long as she was careful. I mean seriously?! Yet again, I’m blindsided and thrown into having a conversation with her that we shouldn’t have to have ever but let alone, more than once. Heartbreak… all over her face… AGAIN! All because someone who is supposed to be a responsible adult cannot follow instructions repeatedly given. This conversation was a little different than others. We had to go more into depth about WHY these things aren’t safe sometimes. Her port was the main cause of concern. We have been told that because of where her port is located, playing games where balls are in the air, risking one hitting her port, are not safe for her. This is from the doctor. Not just us as parents being overly cautious or over protective. Obviously, I have already handled this at the school. On top of this news, Bailey told me that she sat in the hallway, by herself, while they were working on their iPads. Other students were wearing headphones and Bailey cannot wear standard headphones with her hearing aids. All of her school equipment for her hearing aids has come in but they are still working on teaching everyone to use it properly. Since she didn’t have the equipment yet, and she can’t wear headphones, she had to listen to her iPad out loud. She knew that this would be a distraction for others so she asked to go sit in the hallway alone, even though she really didn’t want to. I felt my whole body sink into my seat. My mama heart was in a puddle. I have also made sure that this will not happen again. This is totally unacceptable. Since when is it ok to exclude children because they have extra needs?! It’s DEFINITELY not ok with me and it will not be tolerated. We as a society have to learn more about inclusion. Differences on our ability to learn should not separate us! We have to learn that even though some people may be different than us, we are actually more alike. This cannot be something that continues. Her heart hurts just like every other child when they have had a bad day. This though should not be something happening. We have to learn acceptance and how to love others better and we HAVE to learn that differences cannot cause someone to be excluded. It’s not ok. 

This week is most difficult for us because, starting today, we will be reminded of where our lives were a year ago. Where Bailey was. What her body was being put through. We will be reminded of the pain, the bribes, the sadness, of everything that her surgery from last year brought to her life. I will have to avoid looking back on the memories from that daily notification because I just don’t think I can do it. I don’t think I can ever look back at that time and feel anything but overwhelming heartbreak. I think I will just look at HER everyday and be thankful that the memories flooding my mind didn’t hold her back. That today she is running and playing. I will try hard to push the sad past out with the happy present she is living. Nothing we face now can be as bad as what she was facing a year ago. What she went through and is still going through. She IS still healing and she will continue to heal for years to come. It’s not over. But nothing can compare to those first several months. Those first several sleepless nights. It was nothing short of the most awful thing we have ALL ever been through. She is a hero. She is a force of nature and she is a WARRIOR! Gaucher Disease cannot hold her down. She has shown us that time and time again but she never made it so clearly visible as she has over this past year. So we’ll continue to push her forward. We won’t look back. She’s not there anymore. 

The picture above is from two years ago compared to now. Look at how tiny she was. She was not in good health. Of course, at the time, we didn’t know it. She was literally so fragile that she was breaking. They say a picture is worth a thousand words. To me, this one is worth more than 10,000. It’s shows just how far her sweet little body has come. It makes me happy to know I can see it from the outside so just think about all the good that’s going on with the inside. Her body is being repaired EVERY SINGLE DAY! 💗

Thanks for reading and thank you all, from the bottom of our hearts, for continuously praying for our girl. 

Eff Gaucher Disease… to put it bluntly

 

I went to fill Bailey’s antibiotic that she takes three times a week. Every week. To help her body keep the sicknesses away. Specifically sicknesses that can cause more damage to her already weak lungs. Something she does with a smile on her face and without me having to break them into pieces. Freakin ROCKSTAR! Then the lady comes to the window to let me know that the insurance only covers so many pills every so many days. Our incredibly high deductible AND out of pocket is met VERY early in the year yet this medication that has become a necessity won’t be covered because she has had more than her allotted number of pills. Like it’s fair tickets for rides and games or something. Like it’s fun and she used them all up and now you’re just out of luck. It’s her health. It’s a NEED! And then I’m FLOODED with emotions. How do I tell my ten year old to reach for the stars and to aspire to be anything she wants to be BUT make sure what you want to be has dang good insurance and pays well enough to cover your meds that insurance won’t. How is this the life set up for her? How is this going to be a part of her future? How is this fair in any sort of way?! It’s not… I hate it. It makes my stomach hurt. Today, Gaucher Disease took a little bit of my joy. It put a cloud over the bright future I always picture for Bailey. I don’t usually let it consume me but in that moment, sitting in the line, counting the days until the insurance will cover the next dose, my heart broke for Bailey. It’s not about the money. It’s not that we can’t afford it. It’s the thought of my daughter sitting there, possibly without me, having to figure this out for herself. Educate yourselves people! Reach out to me! Let me flood your inbox with articles because education helps spread awareness and awareness will lead us to a cure and please Jesus let that cure be found in Bailey’s lifetime and SOON! AMEN!

Something Worth Fighting For

 

Something about something terrible happening has so much power and influence over you. Since we found out just how negligent some of Bailey’s doctors were, and since her surgery, it has been hard to share all of what she has been through. Mainly because reliving it is comparatively close to having to go though it all over again. With that being said though, I want to be transparent and open. After all, awareness is the goal. It can lead us to a cure. Plus, great things have been happening to our girl. Her body is climbing out of the hole it has been in for so many years. I can SEE it. She is finally climbing on the growth charts, whereas in past years, she has barely been on them at all. Praise Jesus! I am incredibly hopeful, optimistic, and faithful that she will continue to make great progcess. I will never fully put her medical care in someone’s else’s hands EVER again. I know some of you do not follow her story on facebook so I want to share our latest update with you on here. I will continue to update you all as we move forward because I know that her future is going to be much brighter than her past! Thank you all for keeping up with out girl and praying for her! We are so grateful!

 

I don’t write this with a vengeful heart. Just from a heart seeking even an ounce of justice for a girl that deserves so much more from this world. 

A year has come and gone since our lives slowly began to unravel. The things that happened in the beginning that led us to realize that something was seriously wrong were so small. It actually surprises me how it all came crashing down. We were dragged through the lowest and darkest of valleys. Our hearts hurt in ways we never thought possible. We were promised health and liveliness. We were promised growth and time. Time that would be good. We were promised these things if we followed her health closely. We were promised these things from a man that we trusted. From someone who was fully responsible for following Bailey closely. He was the person we held accountable to checking Bailey’s blood work and time after time we were told everything looked great. We were told she was thriving when in reality her health was taking a huge downward spiral. We were betrayed. It went on for years. It’s gut wrenching. I wish I had known more. I wish I wasn’t as foolish as to put trust in someone other than myself. I wish, to this day, that my hands didn’t tremble and my eyes didn’t fill with tears when his name invaded my mind. I wish I could look back at our lives this time last year and not have to squeeze my eyes shut and take my mind to ANYTHING other than my daughter writhing in pain. To her missing out on SO MUCH. Dances, water slides, birthday celebrations, her begging me to make sure they didn’t capture her wheelchair in her school pictures, her having dreams of being able to walk unassisted again… I could go on and on but the truth is that these things are small into comparison of what it did to her spirit. A child that has been nothing but a rock and fearless since day one, I saw broken down, self conscious, and in more pain than I have ever seen anyone in, ever. We were BEGGING God to just lift it, even if only a little bit. All of this because someone was careless WITH HER LIFE. Her quality of life. 

A year later and Bailey can finally have that water slide for her birthday. It comes with great hesitation. We fear every single move she makes. We gasp when we hear a fall. We have seen something we never want to see with our girl again. Something I would never want to see anyone go through. Somehow, with the darkest this world has offered her, she is braver and stronger than ever. We are astounded with her, once again. I wasn’t sure where that devastation would leave her. Where the pain would take her. It was something that lasted so long, I wasn’t sure that we’d be able to pull her completely back from that. We watched her flourish into this incredibly strong little girl. We have watched her put on weight that I never knew she was missing. She once looked so frail and fragile and I couldn’t see it. I see it now. Broken promises and lies that made us see her as healthy. Someone very sweet looked at her the other day and told me that we were making great progress ❤️ such a blessing that others see it too. My mama heart appreciates those sweet words so so much. 

I watched a sweet loving little boy that has always had a huge and patient heart, love and care more than I ever knew possible. His compassion has truly been inspiring. God really knew what he was doing linking these babies together. Jacob has never shown jealousy in times he truly had the right to do so. We hold our children to high standards and we expect greatness from them but this is hard on him too. He’s experienced great pain from this too. I think sibling’s pain is often underrated. He’s held her hand through the pain. He’s prayed for her very specifically countless times. He’s listened and he’s loved more than what I knew his sweet little heart was capable of 💙 

In a few short months, I will stand before the Texas Medical Board and I will make a statement on this incredibly senseless tragedy that we have all gone through. It has been a hard, lengthy battle, to say the least, and although Bailey is so close to being fully and physically healed from the surgery, the war is not over for us yet. We are still fighting hard for a fraction of justice out of this, as if that’s even possible. Bailey is making great strides and is moving in a great direction but this is still very heavy for all of us. We are still all living through it. It’s all very fresh on our hearts. We will continue reliving this nightmare until we have given all the fight we have left to give. Even if it goes on for years to come. 

What he did cannot be undone. What he did cannot be justified. I will stand in close proximity to a man that I feel so much hurt and anger towards. I know we shouldn’t hate but I despise this human being. It makes my heart race knowing that there will be nothing but a wall standing between us. I can’t even process the feelings of possibly coming face to face with him. I’ll have to work on that. The emotions are overwhelming. We have made it very far into this investigation. Further than most ever make it. Something has been found that the panel “did not like”. Something that requires him to go to a hearing and prove his innocence. The details of what was found have not been disclosed. We’ll have to wait until it’s all over. I’m sure his words will be filled with fabrication and deception. I’m sure he will say anything and everything to plead his case. His worthless selfish case. 

Please pray for us. Please pray that Bailey benefits in the best way possible from this and that he does not walk away scot-free. Pray hard for Bailey. Pray for the babies that he continues to treat and their families. We can’t be the only family affected by his negligence. Pray that I speak the right words and have at least some control over my emotions as I pull these people into the dark world that we were so anxiously trying to run away from. Pray that the details I provide them will sway them at least enough for him to suffer dire consequences. Pray that we can take this beyond the Texas Medical Board. Pray that we can make a difference. Pray for justice. Justice might offer some peace to our hearts.

Day two and everything in between… well some of it…

I started to write about the day after Bailey’s surgery many times and I just could not bring myself to do it. It literally made me sick to my stomach. It was the absolute worst day of our lives and the days that followed were not much better. She was in more pain than I have ever seen anyone in. She cried out. She screamed. She had many sleepless nights. We had to increase her pain meds. We had to beg and bribe her to get out of bed. We had to make nurses and physical therapists leave the room when it got to be too much for her. We had to let days pass before she could bathe. A week pass before we could wash her hair. It was mentally and physically exhausting and our hearts hurt more than they ever have as our daughter suffered in a way I never knew possible. And all we were able to do was stand by and watch. Obviously we prayed, HARD. And we held her and laid with her but it wasn’t enough. It made us ill. I prayed like never before. I was begging God to make the next six months just go by. Now here we are. Six months later. Tomorrow we will wake up and see two specialists. The last few months have been very busy and incredibly important for Bailey. Tomorrow we will find out just how well her port is working. They need blood tomorrow. Praying they get it easily. It’s been very finicky and we are not done with it yet. We WANT more time. Bailey NEEDS more time with it. She needs a break. They will be checking her blood work to see how her body is responding to her weekly treatments she has been having to get with the correct dose to get ahead of the years of damage done to her body. Praying hard for that. Praying that her bones are stronger and she will NEVER have to deal with anything like this EVER again. With good results comes bi weekly infusions. We will do them weekly as long as it is needed, gladly. We would like to see her Tuesdays freed up a little though because she is a nine year old who has been through too much and she deserves a freaking break. BUT we are ok doing weekly treatments. We are thankful for them and for a proactive doctor. We will then head over to Scottish Rite to see the orthopedist. He will check to see how her bones are responding to walking short distances for the last two months without assistance. If everything looks good, he might take away all restrictions. She is SO close to being able to run, jump, and play again. Oh how our hearts long for that. At her age, that is all she wants to do. That is all that her friends are doing. It has brought her spirits down a bit but she is so so close. Praying that her bones look healthy and that she doesn’t have to be cautious with her actions. Praying her bones are stronger than ever. Over Spring break, she will be going for her third hearing test and a hearing aid evaluation. This is very new for us and in the big picture of everything she has been through, it appears small. BUT it is something else that Gaucher Disease has done to her and we HATE it. Again, so thankful that there is a treatment for her loss of hearing if it comes down to her needing it. Thankful that if she truly needs the assistance, it is available to her. I don’t want to seem ungrateful. I just want her to be happy. We build her up. We do what we can to make her not insecure about the wheelchair, port, and anything else that she feels that way about and we have discussed the hearing aids with the same intentions but she is a nine and a half year old girl and she has concerns and questions. She cares what people think. She doesn’t want people to make fun of her. This mama bear does what she can but this is a cruel world we live in and there is only so much I can guard her heart from. If you have a child in good health, talk to them. Tell them about how others hurt from ugly words. Don’t ignore it and don’t wait until your child is in trouble for it. We discuss these things with both of our kids. We want them to be kind. Not perfect, just kind. Thankfully it has only been a fear and not a reality. Praying hard that people continue to be loving, kind, and compassionate to our girl. To both of our babies. We have been so blessed with this. Her insecurities are still there but the kindness shown towards her really puts them at ease. Also over spring break, we will be flying to Virginia to see a geneticist that is highly educated in Gaucher Disease. We want to insure that many eyes are closely monitoring Bailey and that her health is never taken lightly again. There is a lot going on with her right now. We are visiting different doctors on average about three times a week. I wanted to update you all so you could pray with us. This is all very scattered and many details are still unknown. I will keep you all updated. Thank you for praying for our Bailey girl. We love y’all. One last thing, World Rare Disease Day is coming up on the 28th. If you would like a ribbon, please PM me your address. I will mail you as many ribbons as you need. Please help us raise awareness so that one day, hopefully in Bailey’s lifetime, there is a cure for this awful disease that has taken so much from her.