1st off thank you all for all of your prayers & support!!! Your messages, comments, texts, and calls have meant the world to us and been such an encouragement throughout all of this! I wish I had the time to respond to everyone individually, but right now that is impossible with all that is going on. So thank you all!!!
2nd I am not even going to waste any time talking about the few days Makenzie was in the hospital as I had originally said I would do. Honestly the whole thing just frustrates me to know that things were not done that could/should have been. So as Carl keeps telling me there is nothing we can do now so I just need to get over it and move on plus everything happens for a reason. So moving on...
Monday we spent the morning at Duke meeting with Dr's and their nutritionist. The Dr's were great and really took their time with us going over Makenie's history and records. They truly were concerned with everything, getting answers, and figuring things out. Basically they have come up with a plan of tests to run to try and get to the bottom of things. So tomorrow morning we go back for the first round of tests. The first thing is going to be a sweat test to (hopefully) rule out Cystic Fibrosis . I truly do not think that she has CF especially since she passed the CF screening when she was born. Long story short though based on her history and symptoms they just want to be safe and test for it because evidently there are many different forms of CF and the screening does not test for them all. Then she will have a Gastric Emptying Study done afterwards to test some of the GI issues she has. Then we will wait for the results of these tests for a few days (LONG few days of waiting I am sure). Once we figure these results out we will find out the next step or just move on to the next round of testing. The next round would include having to put our sweet little girl under anesthesia which I really hope we don't have to go through with, but if we do we will face that then.
Tomorrow the girls turn 9 months old which is unbelievable to me!!! Poor Makenzie gets to celebrate by going through a bunch of tests, but hopefully we can figure things out and get her growing again and healthy! Please keep us in your thoughts and prayers for the tests tomorrow (especially having to starve her for them) and hopefully a simple diagnosis/treatment. Thank you!
**I realized I never even got around to sharing their 8 month photos so here are our beautiful girls (I'm actually impressed I am posting them in the correct month considering how crazy life has been...gotta give myself some type of credit even if it is on the last day my babies are 8 months old)**
2nd I am not even going to waste any time talking about the few days Makenzie was in the hospital as I had originally said I would do. Honestly the whole thing just frustrates me to know that things were not done that could/should have been. So as Carl keeps telling me there is nothing we can do now so I just need to get over it and move on plus everything happens for a reason. So moving on...
Monday we spent the morning at Duke meeting with Dr's and their nutritionist. The Dr's were great and really took their time with us going over Makenie's history and records. They truly were concerned with everything, getting answers, and figuring things out. Basically they have come up with a plan of tests to run to try and get to the bottom of things. So tomorrow morning we go back for the first round of tests. The first thing is going to be a sweat test to (hopefully) rule out Cystic Fibrosis . I truly do not think that she has CF especially since she passed the CF screening when she was born. Long story short though based on her history and symptoms they just want to be safe and test for it because evidently there are many different forms of CF and the screening does not test for them all. Then she will have a Gastric Emptying Study done afterwards to test some of the GI issues she has. Then we will wait for the results of these tests for a few days (LONG few days of waiting I am sure). Once we figure these results out we will find out the next step or just move on to the next round of testing. The next round would include having to put our sweet little girl under anesthesia which I really hope we don't have to go through with, but if we do we will face that then.
Tomorrow the girls turn 9 months old which is unbelievable to me!!! Poor Makenzie gets to celebrate by going through a bunch of tests, but hopefully we can figure things out and get her growing again and healthy! Please keep us in your thoughts and prayers for the tests tomorrow (especially having to starve her for them) and hopefully a simple diagnosis/treatment. Thank you!
**I realized I never even got around to sharing their 8 month photos so here are our beautiful girls (I'm actually impressed I am posting them in the correct month considering how crazy life has been...gotta give myself some type of credit even if it is on the last day my babies are 8 months old)**
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