Tuesday, December 18, 2012

Tis the season for giving!

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 laceyrugg@hotmail.com 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"!!


Shelly Turpin said...

I hated having Bell's PCP at the hospital but that is what we had to do. Do they have a special needs clinic or anything like that down there? Bell's doc worked PCU/PICU for years and they found kids couldn't go home because no pedi would take them. So they made the Special Needs Clinic at TCH and took all the "fun" kids. She was awesome! She understood. I HATED having to go downtown for EVERY single thing, but she was awesome so it was worth it.

The VW's said...

What cute kiddos, with their blankies! Hope your search for a great doc has great results!

Anonymous said...

i love hearing about jaxon -- espcially his medical needs. it really helps me better understand the preschoolers i teach - as well as what their families might be feeling. (i think i've said before, if you were on the east coast, jaxon would be a perfect fit for my class!) i love getting to know him through your blog!

Melissa said...


I love seeing the pics of the kids that receive blankie's. Its so rewarding to see where the blanket ends up after all the work and time you put into it. I know because I have helped my mother make blankets for you. You've never met me and I've never met Jaxson. But I've read your blog and followed your journey for years. I think it's so amazing that even though your plate is full you still want to make blankets for others. But it is sad to read over and over again that you "are doing it alone" when I know for a fact my mom was/is helping you. And she would always help if needed. She would never ask for recognition and probably wouldnt say a word but I know it hurts her to read things like that when she has been helping for so long. It doesn't really make the the people that are helping or have helped in the past want to help you more.

Good luck finding a good dr for Jaxson. I'm sure it would be so helpful to find one you can rely on through the good and the bad.

Melissa Y.

Lacey said...

Melissa, I'm sorry you feel that way. I never meant for your mom not to get recognition, I know when I used to do it in Utah before we got Arina I never said that I didn't have help, and I think I did mention her a few times on the other blog.I'm so grateful for everything your mom, and you have done with the blankies in the past. Right now I really am doing it alone. I know its hard with me in Cali now, and I know a while ago she said she had a blankie she could give, if we can figure out a good way to get it here without paying shipping twice! I guess I feel like I'm bothering her sending a personal message saying, "can you make more?"

Anonymous said...

Good luck finding a new doc!! It can be so frustrating! You are a great mom, don't get discouraged! We love to read about Jax!!!!