November 23, 2011
The cooks at the elementary school (good friends of ours) surprised us with a pie and roll sale right in time for Thanksgiving! They baked rolls and asked for people to donate pies and the community came to buy for their Thanksgiving get-togethers. They donated the proceeds to us.
Our friends gave me a touching report once it was all over and done with. People brought homemade pies, turned around and bought other pies, and then donated the pies they had just bought back to the bake sale! Pans and pans of rolls were bought. The amount that was raised was certainly more than the worth of the food on the tables.
Jason and I have been prepared to go into debt over all of this, but for whatever reason the Lord has blessed us with the people around us to help bear our burden - financially, emotionally, and physically. I can't help but improve my way of serving after being served the way I have. None of these people waited for me to ask. None of them said, "Well, let me know what I can do to help." They just rolled up their sleeves and went to work. There is no way I would have ever suggested a bake sale for our benefit. I'm sure they had other plans for the days leading up to their own Thanksgiving gatherings, but they chose to serve and bless another in a very real way. There were tears as they handed me the money they raised - not only my tears, but from those that served. Like before, it wasn't about the money. It was more about the support, the friendship, and feelings I have to know people are behind us. God hears and answers prayers in very real ways.
December 18, 2011
My mom and I took a trip this weekend the Shiner's Hospital for a second opinion on Bryer's hips. I needed reassuring, but I also wanted a second opinion on her hospital diagnoses. This was my chance away from doctors in our area. It should be easy to just ask, but not with the reaction I've had at other doctor appointments. We got the second opinion for her hips - it does look like she needs to be weight baring to form her hip joint and that she's considered to have a 'hip at risk,' so they will continue to x-ray it every 6 months. I also asked about hyperbaric oxygen therapy and he said if they had one at the hospital, he would stick her in it today to see if it would help. It was confirming to me that I was on the right track with that research. It took me the whole trip and most of the actual visit to bring up the misdiagnoses. The doctor had gotten to know us over the course of our visit and I hoped he would understand where I was coming from. They always ask in the beginning about past history, so I had told them the information we know for sure - she stopped breathing while she was laying down for a nap. When I told him the whole story and asked him what his opinion was, I could tell he was hesitant to offer it - somehow bound by hospital regulations or a privacy act. He looked at me with tender eyes and said he was sorry. I was definitely not the first he has seen of a possible misdiagnoses. There are too many that get labeled SBS when his gut feeling is otherwise. I felt relief. Finally, a doctor that would understand! I had half-way braced myself for getting shot down again and I felt the stress leave my body as he spoke. He said unfortunately he couldn't testify (how did he know that was an option?), but that he would offer his positive thoughts for our family.
I left feeling satisfied with our visit. At least there's one doctor that says there's another way. There has to be more like him out there! Jason has been working on that side of things and has found a few that will maybe work with us for trial. The cost of these doctors is outrageous. The one we are looking into charges $2000 just to look at our file to tell us if it's something he can testify on. If we choose to use him for court, he charges an hourly fee to prepare and then $10,000 each day that he is here for court! 1 day. $10,000. What other options do we have at this point?!
I had a treat to look around at IKEA with my mom and cousin when we visited Shriners. I noticed groups of ladies with their kids. Shopping with kids is much different than just shopping. I know from experience with 5 that they want in the cart, then out of the cart, want to try out merchandise, and ask for things they want. Kids eat free today at IKEA, which explains why it was worth it to the moms to bring kids along.
We walked around the store and I packed Bryer around, as I usually do. She gets a much better work out through her body and practicing her head control, trying to stay upright on my hip or chest, than hunched over in a stroller. I laid her on all the different textures and tried to find things that would spark an interest for her. I get to provide all these experiences that normally she would be going after herself. After a while she fell asleep in my arms. Packing 24 pounds of somewhat-dead-weight is not easy, so we padded the cart with our coats and I carefully layed her down, hoping the movement of the cart would also lull her and keep her asleep as my shoulder had. When I put her down, her eyes popped open and she layed there content, looking at all the lights along the tall, warehouse ceilings.
I noticed a Mom with an active toddler shopping near me. Her baby, about the same age as Bryer, was climbing all over her, back and forth from hip to hip, trying to climb over her shoulder, wanting to get down and run around, and obviously wouldn't sit content in a cart. I took notice of her, amazed at the ease her body moved compared to Bryer's with her tight mucles. She babbled things at her Mom as a typical 14 month-old would. As this Mom got closer, she noticed Bryer, laying content in the cart, facinated at the simple overhead lights. She looked at Bryer in the cart and said, "Well at least she's laying there and being good and not climbing all over!"
I smiled at her and offered a courtesy laugh. My mouth wanted to open and offer an explaination. I wanted to tell her, "My baby can't climb all over, even if she wanted to. Cherish what your baby can do. Love this time with your child. Enjoy her curiosity. Let her explore. Let her handle the textures in the store. Lift her up to see the things that facinate you. Point out colors and shapes as you shop. It is a miracle the way her brain processes and connects." I looked down at Bryer and her innoscent smile at the lights above her. It made me smile as I looked up to notice what she saw. Simple, bright lights. Or maybe she was smiling at her angels again. I am thankful for her to helping me to look up. Not only physically, but spiritually to look up. Look to God for help in raising her... To find the simplicity in miracles... To find and have the simple, childlike faith that is essential to our progression. And I'll try to remember my own advice when I have all 5 of my kids at the store with my next time and they want to touch and feel and talk and show me all that they find amazing.
Jan. 11, 2012
A new year, but I feel like we're caught still stewing in the old one. We have 2 big, thick binders almost all together to send off to a neurosurgeon in Maryland. He was very picky about wanting the information divided and labeled a certain way - police reports, past medical records, birth records, current therapy records. We went over the binders with our family doctor to make sure it was in the right order. I am thankful for his help and determination in our case.
He marked all the red flags he noticed as he went through all the medical records:
-The fracture that wasn't in the first scan, but showed up after intubation
-There was never any mark or bruising around the site of the fracture.
-Blood levels that were high already, which are not from trauma, but from prior illness.
-Lack of spinal damage or other broken bones. If a baby is shaken hard enough to cause brain bleeding, there should also be spinal damage and possibly cracked ribs.
-There was retinal bleeding, but her retinas stayed in tact. Again, if a baby is shaken that hard, there should be either 1 or both detached retinas.
Bryer's pediatrician has been less than helpful, but our family doctor is also a friend of ours and has been a great advocate. I would like to change doctors for Bryer, but there's a fear instilled in me - that if I switch, I won't be providing her with the best or I'll be hopping doctors to escape from something. The truth is, if I was diagnosed with cancer tomorrow, I would get a second opinion. There's also the fear of searching for another doctor that will understand us, and maybe getting shot down several times in the process. How do I gather that much strength to go from doctor to doctor trying to find one that will understand?
Court was an eye opener for me. Again, I sat at the table labeled "Defense" without Jason next to me. It's like a really bad Law and Order that just won't end. The implications hadn't sunk in until the judge explained the consequences if they find me guilty. Felony injury to child carries a sentence of a minimum of 1 year incarceration with a maximum of 10 years. Court fines on top of that. Makes me sick to think I could miss my kids' baptisms, their first day of school, tucking them in at night, reading stories to them, making dinner, doing their laundry, kissing Jason when he walks through the door, running them to/from practice, sleeping between Jason and Bryer. It's a hard thing to pray for Heavenly Father's will to be done. This is a good, righteous desire to be able to stay and raise my family, right? It's not like I'm asking for something that's not appropriate. Can I have enough courage to ask that His will be done? Is there someone that needs the gospel in jail? I love this life and my testimony. Am I strong enough to let it all go so I can share it openly with whomever needs it? Is it really true that He makes up for every tear shed, 100-fold? It has been worth it this far to see Mandy and Jamie change their lives. Is there more? Is it enough of a trial to raise a special needs child or would God also ask for our family to be separated? I haven't found the courage to ask. Something holds me back. I want to do the Lord's will - put it all in His hands, but it is so hard!
We had 2 doctor appointments today - the gastroenterologist to find out why Bryer's digestive system is so sporadic, and her pediatrician. The first doctor only visited with us for a short time and then started asking more in depth questions, so I put it all out there for him. He said, "Wait?! They brought charges against YOU?! Hopefully they are just crossing their t's and dotting their i's. I'm really sorry." It doesn't take long to get to know us - even for those that have all the negative hospital records in front of them. He agreed with all of what was in front of him until I said that I was the one in question. Even this doctor, a complete stranger to us, could not see how this could be. He sent us home with a dosing chart of milk of magnesium.
Her pediatrician made the comment, "She is making significant improvements and her tone (tight muscles) feels a lot better." Still, her head circumference shows not much growth. I wish they wouldn't even chart that measurement. I'd rather talk about all the improvements and not dwell on the negative - the visual chart that shows her head circumference is dwindling off the charts. Later on as I let him know that charges have been filed, he said, "I'm so sorry! You obviously love and care for Bryer. I am so sorry for you and that you have to emotionally revisit all of this." Still sticking to his original diagnoses, maybe he thought it would all go away. Maybe these doctors don't understand the implications their opinion has on the legal side of things. They are using their medical opinions as fact.
Kids are abused. I get it. It makes me sick to even think about. I accept that SBS is real. But just as real as it is, it's also not the only way to get the same symptoms. It's like a child breaking an arm. There are a million ways to break an arm - a fall off a bike, a horse, a trampoline. Abuse is just one of them, but it's not the answer for all the others, or to use as an escape if they can't diagnose it correctly.
Feb. 20, 2012
When I ask her doctors and specialists what else we can be doing, they only answer with therapy. We're doing that. She's making slow progress, but it's progress. Her head control is good enough that she's graduated to a new kind of standing frame! It's emotionally easier for me to put her in this one - and she loves to play in it!
|Bryer's Fan Club (her service coordinator, OT, and vision therapist)|
|Bryer working hard to straighten out her right arm with her PT|
|Bryer, loving her new standing frame|
So the next logical step seemed to be to find a chamber to climb into with Bryer. As I started researching, I found stories and videos of people it had an effect on. My curiosity was growing the more I continued to learn. I started getting serious. I looked for places all over the U.S. I learned that there are 13 diagnoses that are covered by insurance for the use of hyperbaric oxygen therapy (HBOT). Bryer has been officially diagnosed with cerebral palsy - not one of the 13 covered under insurance, although I had found individuals with CP that had been helped by HBOT. I found chambers on the far side of our state and some in surrounding states, but none in our area. They ranged in price from $100 to $800 for one session. The chambers were anything from a tube to lay down in, to a whole room to seat 12 people. All the centers said the same thing - Bryer would need between 20 and 40 treatments to see any kind of results to determine whether it was worth the cost. That's a lot of money, especially when we are battling the legal stuff we have in front of us. I feel like I'm researching in circles, without any possibility of a break through to actually try it.
As we met with Bryer's doctors and specialists, I asked each of them about HBOT. Each of them said about the same thing - there wasn't enough research done for or against it, but it wasn't going to hurt her. They gave me the go-ahead with the hesitation that it was expensive and no proof behind it for CP.
We have been scrutinized so much on the care we give Bryer that I wanted to make sure it was out in the open - that this wasn't some secret, strange, 'alternative medicine' we were trying to experiment with. I felt good that each of the doctors said it wasn't going to hurt her. My wheels were turning. How could we make this available for her? I prayed and asked that if this may be of some benefit to Bryer, then God would make it available.
More phone calls to clinics and hospitals with chambers and no one would see her unless she had one of the 13 diagnoses. I felt like Moses, standing at the Red Sea with the Isrealites. God had taken them that far. He had protected them. He had led and guided them. And they reached a dead end.
Or so they thought.
I continued to pray that God would help us find a way to provide this service for Bryer. I felt like this was a big part of her recovery and progression. If we didn't do it, I would always wonder what would have happened if we tried HBOT. And if we tried it and it didn't work, at least we could say we did everything in our power to help her.
I got a phone call at the end of January. My sister said she heard of a deal through Living Social, an online marketing business, advertising HBOT. It was a chiropractor's office that just got a chamber and was trying to get the word out about it. The deal they were offering was $40 for 2 treatments. At first I was hesitant. I didn't want to get excited about the possibility only to have it be a flop. I prayed for composure and I called the doctor in charge of the chamber. When we finally got to talk together, he answered all my questions and proved to know what he was talking about. The main disappointment was that it was a soft shell chamber. Not ideal, but still worthy of trying. A soft shell chamber can reach 1.3 atmospheric pressure. Ideally for Bryer she could use a 1.5 pressured chamber. He said it could still be beneficial, but that there were no guarantees. I appreciated him being up front and honest with me from the start.
I called my sister back to report that it was a worthwhile endeavor and she sent out emails to friends and family asking if anyone wanted to sponsor Bryer for sessions of therapy. The response was wonderful! 14 'deals' were purchased, equaling 28 sessions of treatment!
The sea (seriously - a sea!) parted for Moses and they crossed on dry ground. What I had felt led to, but seemed to be impossible, God made possible!
Our plan is to travel the 2 hours down on a Tuesday during the day, go in for a treatment that evening, another treatment Wednesday morning, then again Thursday night and Friday morning, and then drive the 2 hours back home by the time Hunter and Sawyr get home from school on Friday. Jason does quite a bit of traveling between offices. He is home nearly every night, but it usually isn't by the time Hunter and Sawyr get home from school. As I worried about what to do with my older boys as we were in Boise for treatments, Jason suggested his youngest brother and wife.
They had been in Guam up until Christmas time and had prayed for a way to help us in anyway they could. They felt that if they were to move home, then they would be able to assist in whatever way we could use them. I feel so fortunate to have family willing to put themselves out there and willing to act as Christ would if He were here. He served the people without reservation. So do they. Everyone just has pitched in and the Lord has taken over...
We have submitted the binders to our expert witness weeks ago and are still waiting to hear if it's something he feels like he can testify on. The court has approved $25,000 of expert witness fees to be paid, rather than us coming up with it. It should feel like a relief not to have to come up with that money, but instead I feel unsettled. The money has to come from somewhere. Taxpayers? Hard earned, tax payer money that shouldn't have to be wasted on an expert witness that shouldn't have to be hired in the first place. I try not to be mad about the whole situation, but it's frustrating to say the least. At what point has a family had enough? Can we call 'uncle' yet? We've had enough! How much more can we take? Wouldn't it be a lot more beneficial for all these fund raisers to be going for Bryer - for HBOT - for something other than ridiculous legal fees and attorney costs? We have no other option than to continue to fight tooth and nail to keep our family together. And ask God for his blessing in the process. He has a map to this crazy maze we're in. I need that view and communication from the top so I don't get wrapped up and lost in the process of this mess.
|Sisters, ready to cheer on their brother at his basketball game!|