I HAVE THE BEST NEWS TO SHARE!! I spoke with Emmas endocrinologist. The doctor told me that Doodlebug has no permanent damage to her pituitary gland! SHE DOES NOT HAVE LONG TERM DIABETES INSPIDUS! She did have it following the accident. The dr said this is common with head injury patients. So the dr said it was transient and has since resolved! PRAISE GOD! So in case you want to know...How the dr is able to determine this is through the baby steps we have taken-cutting the diuretic and potassium in half, stopping those medications, and reducing her g tube water flushes. Her labs would be off if she had DI. Her labs have been normal! Emma also is not showing any signs of DI such as extreme thirst, extreme diaper wetting, concentrated urine, etc. monday we will stop her last water flush and recheck her labs! The dr anticipates these will be normal! Then the next step is to work on getting her to take seizure medicine by mouth. I am getting it flavored so hopefully that will help! Then we can look at removing her G tube!!! WOO HOO! I have an appointment with her endocrinogist in March but hopefully thereafter her visits can become 6 months and then yearly. She will need to be evaluated in the future at least yearly because of the brain injury they still need to monitor her hormones which can change as she gets older. So doing routine blood work will be done to monitor her hormone levels through out her life. BUT she does not need life long treatment for DI :)) So today we went to the doctor to get her G tube changed (it has to be changed every 3 months) and some how her appointment is actually for February 23. I am not sure how that happened but regardless we stopped to see the nurses on neuro that have not seen Emma since December. I got her out of the stroller and showed them how she is taking steps with me supporting her. She was jumping up and down laughing at the nurses lol. She even told them hi! They were amazed to see her eating a french fry on her own and taking a sippy cup on her own (I bought her a new sippy cup muchlike the one she had before the accident AND she took it like a champ-see picture). Her music therapy who use to play guitar and sing Emma Frozen came by and was like oh my goodness is this EmmaJean???? She was really surprised to see how well she is doing (I would say it has been 6 months since they last saw each other). Gunner continues to talk more. Tonight he said your welcome several times for the first time. He looked at his cat and said see you (like see ya later) lol it was the most funniest thing. Where do these kids come up with this lol. I am just so incredibly proud of both of them!!! I got a call back from the represenatative who is drafting a bill to make it law that kids rear face till 2 years of age. They are working on gathering support for the bill and will be having a press conference in February. They have asked me to come speak!! I am just so over the moon. They want my help! I am beyond excited!!! I have been praying I could make a difference but never dreamed it would go this far! I have all of you to thank for all of your support that has helped me bring some good out of this horrible tragedy! I also heard that there is interest in making me the keynote speaker at the 2015 Minnesota Toward Zero Highway Deaths Conference. Last year I spoke at the conference and apparently my speech touched a lot of people. It is quite an honor that they are even considering me!! I have so much to be thankful for in my life. My biggest blessings are my children!!!!
Posted on: Sat, 24 Jan 2015 06:02:18 +0000
Trending Topics
Recently Viewed Topics
© 2015