Generosity is paradoxical. Those who give, receive back in turn. By spending ourselves for other's well-being, we enhance our own. This is not only a philosophical or religious teaching, it is a sociological fact. - Christian Smith, The Generosity Paradox
This hit home so much with me this weekend. Our pastor preached on generosity and how you need to have a generous spirit of the heart in order to have generosity. For the past two weeks, people have been beyond generous in our lives. Without really even really reaching out and asking people have given funds to help support Makenzee's medical bills. I can't begin to even describe the blessing that has filled our lives by people doing this. A weight has been lifted off of Joe and my shoulders, that has been weighing us down for the last few months. We were able to see the doctor in Seattle without having to count pennies to be able to go.
While we were in Seattle the Doctor changed Makenzee's medicines around a bit to help with the increase in the reflux. It has seemed to help as much as we can see in 2 days. The doctor also told us she will help as much as she can over the phone so we can save the drives and money for when we really need to be seen. These phone calls and visits could be often, as Makenzee is gaining weight we will have to adjust medicine to help with the maintenance of the disease.
Joe and I have always thought there has to be an "umbrella" diagnosis that covers everything that is going on with Makenzee, our pediatrician agrees. So last week we saw a geneticist doctor. He is thinking with everything she has been through and how she is presenting right now that she has a connective tissue disorder of some sorts. It will be a long road to figure out which one it is for sure but he did say that there is not much we can do for it anyways except for physical therapy and orthotics (which we are doing right now anyways). So there is more testing and more blood work in our baby girls future but hopefully it will lead us to answers and give us a better path. The Seattle GI doctor agreed a diagnosis of a connective tissue disorder is probably right when she looks at Makenzee's complaints of certain things. This can affect the entire GI tract and we are seeing signs of little things that she is already having issues with at times.
So in response to all of you who have helped us out on the GoFundMe, or given us money, THANK YOU!!!! Thank you isn't even a word big enough to show our gratitude for you generosity!!!! I wish there was something even bigger that we could do or say than just that little word. But please know that we are sincerely grateful and blessed to have each of you in our lives. The money will be put towards therapy items Makenzee will be needing long term, insurance needs and all the trips back and forth to Seattle.
Thank you!!!!
Monday, October 23, 2017
Tuesday, October 17, 2017
More and More it just keeps going
I have been so swamped with everything lately that I haven't had a chance to update about the going ons of Kenz. Where do I even begin?!!! The positive side is that she had an amazing July. Stomach pain was low, and she was over all feeling better. Then wham!!!!! August hit and a flare hit her again. We saw a new doctor in Seattle to see if they had a different recommendation than the doctor here in Portland that in June said Kenzee was a miracle and she would be totally fine since she had the NJ tube. We knew that wasn't the case.
We met with the Doctor at Seattle Children's hospital. Wow she is was amazing. She understood what we have been through, the ups and downs and the whole process. She went over Kenzee's years of gastrointestinal doctors notes and reports and confirmed the diagnosis of gastroparesis. She agreed that Kenzee needs to be followed closely and regularly. We felt really comfortable with her and can't wait to get back and see her again.
Since that appointment there has been more and more nausea and vomiting spells. This just tells us she is in a bigger flare and it is lasting longer than we want. It seems she is coming out of the flare now. She has put on four pounds in the last few weeks with some tweaks to the medicine by the doctor over the phone while we were waiting for insurance to approve more visits. This coming Friday we go see the doctor in Seattle again.
The super bad and frustrating news. After the initial appointment with the doctor in Seattle we requested more appointments for follow up visits. Because the kids are on Oregon State Medicaid they denied the request. We appealed that decision with letters of medical necessity from the GI doctor in Seattle. Last week the insurance denied our appeal. We are super upset and frustrated because we feel we can get the level of care she needs from Seattle's hospital and there hasn't been a hospital locally that can provide it. I have called every peds GI office to see if they have a specialist locally they don't. I have called adult GI offices to ask for recommendations and they have none in Oregon. This is something we need to do and she needs. So as of this moment we are cash paying to see the Seattle doctors. We will be contacting an attorney and filing another appeal to have a hearing at this point.
Since this has been announced that we are in this situation, there has been an overwhelming outpouring of love and support from our "village." Joe and I have always said it takes more than the two of us to raise these kiddos and it takes a village. Well our village has showed up in full support. We have a GoFund Me campaign going right now to offset these costs. There will be fundraisers along the way. We are trying to fight the insurance and then also trying to figure out if we can afford to put her on Joe's insurance. It is a big huge mess!!!! It's exhausting and tiring. She is also going through genetic testing to see if there is an umbrella diagnosis that encompasses all of everything she is and has gone through. She is a trooper and such a strong little girl!!!
Please keep us in your prayers and thoughts as we go forward!!!
We met with the Doctor at Seattle Children's hospital. Wow she is was amazing. She understood what we have been through, the ups and downs and the whole process. She went over Kenzee's years of gastrointestinal doctors notes and reports and confirmed the diagnosis of gastroparesis. She agreed that Kenzee needs to be followed closely and regularly. We felt really comfortable with her and can't wait to get back and see her again.
Since that appointment there has been more and more nausea and vomiting spells. This just tells us she is in a bigger flare and it is lasting longer than we want. It seems she is coming out of the flare now. She has put on four pounds in the last few weeks with some tweaks to the medicine by the doctor over the phone while we were waiting for insurance to approve more visits. This coming Friday we go see the doctor in Seattle again.
The super bad and frustrating news. After the initial appointment with the doctor in Seattle we requested more appointments for follow up visits. Because the kids are on Oregon State Medicaid they denied the request. We appealed that decision with letters of medical necessity from the GI doctor in Seattle. Last week the insurance denied our appeal. We are super upset and frustrated because we feel we can get the level of care she needs from Seattle's hospital and there hasn't been a hospital locally that can provide it. I have called every peds GI office to see if they have a specialist locally they don't. I have called adult GI offices to ask for recommendations and they have none in Oregon. This is something we need to do and she needs. So as of this moment we are cash paying to see the Seattle doctors. We will be contacting an attorney and filing another appeal to have a hearing at this point.
Since this has been announced that we are in this situation, there has been an overwhelming outpouring of love and support from our "village." Joe and I have always said it takes more than the two of us to raise these kiddos and it takes a village. Well our village has showed up in full support. We have a GoFund Me campaign going right now to offset these costs. There will be fundraisers along the way. We are trying to fight the insurance and then also trying to figure out if we can afford to put her on Joe's insurance. It is a big huge mess!!!! It's exhausting and tiring. She is also going through genetic testing to see if there is an umbrella diagnosis that encompasses all of everything she is and has gone through. She is a trooper and such a strong little girl!!!
Please keep us in your prayers and thoughts as we go forward!!!
Wednesday, March 15, 2017
Another obstacle...
I figured the best way to get the information out to a lot of people was to write another blog post. This is not what I was expecting to have to continue but it looks as though this blog will be updated a lot more in the future.
Makenzee and the Gastroparesis ended up being anything but simple. We went to her GI dr today to have a recheck. In the last four months she has not grown at all and she has lost 3 pounds. The medicine we started about a month or so ago hasn't helped her very much. We saw a dietitian a few weeks ago. She suggested we track Makenzee's caloric intake for a few days to see where it was. Makenzee is in-taking between 700 and 900 calories when she is supposed to have 1500 to 1700 a day. We are at the point that we need to get her caloric in take up and it just really isn't possible. We have tried and it ends up at that 900 calorie mark and she ends up with tummy aches. With the dietary restrictions of gluten and dairy and now adding in low fat and no fiber, it is just making everything that much more complicated. There are lists of things we have tried, I know we haven't tried everything but so many of them have failed. The dr today told us that there are 3 medicines we can try for this. Makenzee failed on the first, the second is where we are now and its barely touching it and the third is our last resort as treatment. The third is black boxed and the side effects can be horrific. We would like to stay as far away from that as possible. So we are now at the point that the doctor is suggesting that we use an NG tube to deliver feeds during the night, hopefully making up 600 calories from her missing them during the day. She will continue to eat during the day and this will be something added. The hope is that this will give her body the boost it needs to continue to grow like she should. This introduction of the NG tube will happen during a hospital admission over a few days. We will also do a food challenge for the dairy while we are there, in the hopes that she can tolerate some sort of dairy because it contains a lot of calories in a small amount of food.
Joe and I are pretty lost and heart broken right now over this. We appreciate each of you and the prayers and love for our family. Please know we overwhelmed and upset by this news. We never expected this to come so quickly. If you reach out know that we appreciate it and we will get back to you when we can. We are trying to process all this and help all 3 kids process this huge change in our lives. Keep praying for a miracle and for our Turtle baby to have some sort of glimmer of hope because this just can't be her life.
Makenzee and the Gastroparesis ended up being anything but simple. We went to her GI dr today to have a recheck. In the last four months she has not grown at all and she has lost 3 pounds. The medicine we started about a month or so ago hasn't helped her very much. We saw a dietitian a few weeks ago. She suggested we track Makenzee's caloric intake for a few days to see where it was. Makenzee is in-taking between 700 and 900 calories when she is supposed to have 1500 to 1700 a day. We are at the point that we need to get her caloric in take up and it just really isn't possible. We have tried and it ends up at that 900 calorie mark and she ends up with tummy aches. With the dietary restrictions of gluten and dairy and now adding in low fat and no fiber, it is just making everything that much more complicated. There are lists of things we have tried, I know we haven't tried everything but so many of them have failed. The dr today told us that there are 3 medicines we can try for this. Makenzee failed on the first, the second is where we are now and its barely touching it and the third is our last resort as treatment. The third is black boxed and the side effects can be horrific. We would like to stay as far away from that as possible. So we are now at the point that the doctor is suggesting that we use an NG tube to deliver feeds during the night, hopefully making up 600 calories from her missing them during the day. She will continue to eat during the day and this will be something added. The hope is that this will give her body the boost it needs to continue to grow like she should. This introduction of the NG tube will happen during a hospital admission over a few days. We will also do a food challenge for the dairy while we are there, in the hopes that she can tolerate some sort of dairy because it contains a lot of calories in a small amount of food.
Joe and I are pretty lost and heart broken right now over this. We appreciate each of you and the prayers and love for our family. Please know we overwhelmed and upset by this news. We never expected this to come so quickly. If you reach out know that we appreciate it and we will get back to you when we can. We are trying to process all this and help all 3 kids process this huge change in our lives. Keep praying for a miracle and for our Turtle baby to have some sort of glimmer of hope because this just can't be her life.
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