Okay, this is my challenge for everyone. To help spread the blankie word. Spread the word to everyone you know, you don't have to be the mom to request a blankie. I've had people request for other people they know. Also, we may be starting a rememberance blankie. I've had a couple of requests for people whose kidos didn't win their battle, but I want them to have something tangible. So I've got someone who will stitch names and dates of birth and death for a rememberance blankie. Also spread the word to help us get donations, so we can send blankies to everyone who needs one. I even have a request from Australia, cool huh?
Write a post and put this button in so everyone knows where to go.
Thanks for your help.
this is my blankie table, I need a bigger table, so I can get more organized with whats done, what needs to be done, and what needs to be sent out.
A quick update. I finally got a hold of Jax hemo doc. He said he does have antiphospholipid antibody syndrome, a clotting disorder. I've been trying to get them to give me a name for a while and they just kept saying he has antibodies. Since no one wants to fix the SVC syndrome, or the narrow SVC vein he has from an old clot, he is going to call a doc in Colorado who is the pediatric clotting specialist. I love this guy, he is on my same page, since my sweet cardiac surgeon can't help us, we need a second opinion on what to do. I am not leaving him in the hands of our cardiologists here, they've already screwed him over once. So stay tuned for more info.
8 comments:
Sure thing, it's amazing what you do. Really, I know where you are. Because I'm there too, and for just as many years. All that along with other children to take care of and lives to live..it's enough to make you nuts. To take on something else along with all this, something so big. Believe me, I have nothing but admiration. So I will definitely spread the word and as for Jax, you go Mama. If at first you don't find perfection (in a doctor).. look somewhere else! Good luck sweetie.
Oh Lacey - you are so kind to think of others the way you do! You know what? My husband is coming to USA (Atlanta) in July to visit friends, I wonder if I could order and pay for a blankie for my nephew who was diagnoised at 8 months with Neuroblastoma Cancer and beat it at 15 months! He has also been diagnoised with Autism this year and my is TOTALY besotted with Thomas the Train! Shame the sweet thing sleeps with Thomas the Train serviettes (we are very limited to what we find here with regards to Thomas) and anther of his firm favorite is a Thomas Gift Bag! BUT thank goodness we get the DVD sets! Maybe we can arrange a postage to my husbands friends address? Please let me know and I would love to pay you for it! God bless! Megan and Keaton
Wow, what a fight Jax has been through. What sort of seizures does he have? My daughter had Infantile Spasms. Is he on meds for it? I found my daughter got very consitipated when her epilepsy was not under control. I think the neuro messages weren't working properly. It all started working better once her epilepsy cleared up. Sheena has a lot of things in common with Jax. She is 3, she has pulmonary hypertension, sleep apnoea, Down Syndrome, hypothyroidism, Cardiac issues, eyesight & hearing problems and all that other stuff. Other than the epilepsy which was severe +++, everything else is magnificently mild or moderate. Looks like Jax has things on a much more serious level. I will follow your fight with interest. Thanks.
Glad to hear that you will be getting a second opinion! Hopefully they will have answers and be able to help Jax!
I'll spread the word soon!
Lacey,
I have been hanging on to this link for when somebody needed cheering up. It was posted about the same time as the Spread the Word Campaign. Just thought you would get a chuckle out of it.
http://davehingsburger.blogspot.com/2009/04/new-meaning-for-ot.html
Hugs!
Steph and Christopher
www.carepages.come OurLittleMan
Hi Lacey! Thank you so much for agreeing to do a blankie for Deqlan (my nephew) with Thomas the Train - it means the world to us! My husband is coming in July (the 15th I think). Wow - thank you for the offer of some of the thomas toys - you are so kind my friend! Im sure Deqlan's face will light up with delight! Will chat closer to the time then! Hugs to Jax! Megan and Keaton
Lacey - what a rough week you've had. We pray some answers will come soon and the pediatric clotting specialist will have some ideas for Jaxson.
Your oldest is the same age as my oldest - I am just waiting for that maturation letter to come home from school - oh yipee!! I can't believe he is old enough to start thinking about this whole puberty thing. He is also my sensitive one with Carter - he also wants him when we die - but he may have to fight my daughter or get joint custody or something. It is sad that our kids have to think of these things at such a young age.
Again I am totally serious if you need help with crocheting blankies - I'd be more than happy to help. And I will spread the word.
Kristi and Carter
I'm glad to hear that someone is finally doing something about the clotting issue! I hope they come up with a solution. :)
I will blog about you and your awesome blankie project!
BTW, I requested one .. not sure if you would know who I was though. :)
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