This post is about the two most unpopular topics it seems by blog clicks and comments. The blankie project and Jax medical updates! If you ever have any questions or need me to be more laymen with Jax medical updates, don't hesitate to ask!
First Jax. His retching and vomiting is slowly getting worse. I think his nissen is slowly opening up more and more, and he's refluxing like crazy! We went to a new GI on Friday, and she was AMAZING! I'm so glad! She didn't talk down to me, and she listened to everything I had to say. The one thing that bothered me, but that every doctor does, is being so afraid to do anything to Jax! This doc is even afraid to scope him again, even after I told her he'd be fine! So for right now she wants to check the PH in his stomach acid and his oral secretions. Athough I'm not sure that will tell us much. Next step after that would be the scope, to check his esophagus for redness and wear from acid. Then after that would be the decision to try fixing the nissen one more time. I think if they do it open, they may be able to handle it better, both times he had it done laparoscopically Even she was surprised they didn't do it open the second time!
Next his labs were all out of wack last time we visited the keto diet clinic. His chloride is low, which has her worried about his kidney function. She wanted him to see a nephrologist, to which I said not right now. I think I know what will fix the chloride. I don't know if its because I don't want to add one more specialist to the group, or because if we see nephrology, we'll have seen the doc for every body function. Yikes!
I just got back from the lab with Jax for follow up numbers, and it was a no go. Three pokes, no blood, and no veins. I think I'm actually going through mourning now that I've realized that I will never find a doc like Jax Utah ped! I'm so frustrated because right now I feel like I'm truly alone, that I'm managing his healthcare myself, and that is a daunting task! I email his current ped with a question, like what can I do for pressure sores on the back of his head. He sends me a few pics of some pillow. No more to offer than that. Well thanks for nothing!! I have one more Ped I'm interviewing on Thursday, and if she doesn't work, I'm literally going to go down the list of peds in my area and interview every. single. one. There has got to be a good one somewhere!!
I'm keeping my fingers busy right now with blankie requests. But I must admit, its becoming daunting because I'm doing it alone, and get very little donations. Postage is getting really expensive, and right now it costs between 5 and 6 dollars to ship a single blankie.
Its so rewarding sending the blankies to these kids. To see the pictures of their smiling faces, and get the notes from their parents!
"Her blanket arrived the day her new forever family flew in to meet her! We all opened the package together, but first they had to take pictures of her name in the address field: WARRIOR CLARA. We all love that, but it brought tears to my eyes. I'm the one who has seen her in warrior mode for three months. Thank you for that awesome acknowledgement of her fierce struggle. And thank you also for the darling GIRAFFE blanket! What a beautiful addition to her giraffe collection. She is using the blanket and it has already been through the washer! May God bless you for your generosity and kindness for my baby."
JoAnns fabric is having a sell on flannel right now. 60% off until Christmas Eve. That is a killer deal! If you would like to donate fabric, email me at firstname.lastname@example.org and I'll let you know what we need. And please share our facebook page so we can spread the word and get more "likes"!!