I have noticed that since Allie has been on the "real" food (Compleat Pediatric) she has been eating a little bit more orally. Not sure if this is just a coincidence or not but it's been a bit noticeable. I know her Compleat Pediatric is gluten-free so at first I thought maybe that's why she's eating better. However tonight I looked up her Boost Kid Essentials and her Peptamen Jr. milk and both of those are also gluten-free. Since all 3 formulas are gluten-free and this is basically what she lives on, she isn't getting any gluten in her diet. So, she should be feeling good right??? Allie will eat a small amount orally so there is the chance that what she is eating orally is causing her to feel icky - sounds like a long shot to me though. Keep in mind she only consumes approximately 50-80 calories by mouth.
Not really sure how I'm feeling tonight. It's not very often that we get abnormal test results for Allie. The only other test result that was abnormal was her gastric emptying test. Part of me is left wondering if this is Celiac or a gluten sensitivity then why isn't she showing any of the signs? Another part of me is pissed because if this has been her problem all along then how come Children's Hospital or Mayo Clinic didn't discover it? Actually Children's Hospital did test her for Celiac disease back in July 2009 and it came back negative, however they didn't run the same test as Dr. Brown did. So, if two major hospitals missed this then I will be very upset. Another part of me is happy because we are now going in the right direction and close to a possible diagnosis. Mainly my emotions are a mess and I'm not sure what I'm feeling. One minute I'm happy and the next I'm mad - I cannot stop researching and wondering what is wrong with Allie. I am praying the endoscopy and colon scope on Friday gives us some definite answers. I' also hoping they can give us some preliminary results on Friday after her endoscopy - the waiting portion is the hardest part sometimes!
In addition to her blood results, our nurse fro GI Assocaites called this morning and said there is no Dietitian here in Wausau that works with tube fed children. We will now have to travel to Marshfield to establish a new Dietitian (since we aren't going to Children's Hospital anymore). I don't have a problem going to Marshfield but I am a bit upset because it has taken GI Associates 2 weeks to arrange a Dietitian for us. The new Dietitian is suppose to call tomorrow to set up an appointment, all I know is that she better call :)
On top of this, Matt goes in for her thyroid biopsy on Wednesday. This biopsy is adding a whole new level of stress to the family. As some of you know, Matt is completely and whole heartily scared of needles. Matt has never been really sick before and besides regular physicals, he stays clear of doctors. This biopsy for Matt is a major thing and he's completely stressed about it. His doctor called him on Friday to give him a little bit more information on the biopsy testing and detailed information on his thyroid nodule. Matt's thyroid (nodule) is very large measuring at 5x4x2cm. According to the doctor, this is quite an abnormally large size. Matt's nodule is complex meaning there is solid and cystic material in it. In addition, there is significant blood flow running through the solid material. We were praying there would be no blood flow because then the chance of the nodule being cancer would be very very slim. Unfortunately, there is significant blood flow - this doesn't mean it's cancer it's just one more strike against him. We are very hopeful that everything comes back clear and we should get the biopsy results on Friday or Monday. The crazy thing is Matt is stressing about the biopsy procedure and not the actual biopsy results. Please keep him in your prayers this week - thanks!
Time for this chick to get to bed. We had a busy weekend with Shannon and Mike. They surprised us on Friday night and came to visit for the weekend. They wanted to help keep Matt busy so his mind wouldn't be on the biopsy - it was a success!! We stayed busy and had a great time. My parents came today and we went to Chloe's Christmas program and then my parents are staying with the girls on Wednesday so I can be with Matt at the hospital for his biopsy. Shannon and Mike are coming back to our house on Thursday so they can be with Chloe while Matt and I are at the hospital with Allie for her endoscopy and colon scope. it's a crazy week in the Berndt house but feel very blessed that we have such wonderful family helping us out!!!
|Chloe Ann all snuggly in her nightgown|
|Allie up close just checking to make sure all you Internet friends are still there!|
The thought of a long journey should not be of the distance to get where you are going but to enjoy life along the way."
Written in 2005 by Gary Kujat --- Michigan
Written in 2005 by Gary Kujat --- Michigan