A dusting of my past

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My name is Dezarae’. i am originally from Hutchinson, Kansas. i joined the military at 17 served 4 1/2 years. The military itself was not bad, but i delt with alot concerning people in the military. I taught myself to crochet when i was twelve, havent done much until late 2008. When i crochet and knit it makes me feel like i belong to something. Its the one thing in my life that i can fix if i mess it up. I am working on slowly starting up a business which will be called Making Traditions. Making Traditions is a store for all ages and all sexes. You can learn anything from needlepoint, spinning fibers, crochet, knitting, canning, cooking, baking, vegetable gardening tips, sewing, Quilting, preserving, and freezing. Along with being a one stop shop for all these categories. The motto of my business is “making yesterday’s talents, today’s traditions”. My goal is to find a link between the past and the present to bring families of all generations together. while also providing skills which will come in handy for the rest of one’s life.

Tuesday, March 30, 2010

A condition which brings little concern.




Little concern to the DOCTORS! I'm freaking out a little bit!

Wednesday, January 6 -

AGGGGHHHH, I love my peds doctor, until these last couple of weeks, my 18 month old ( who had his first heart surgery at 6 days old and his 2nd heart surgery at 5 months) he has hypoplastic left heart syndrome and transposition of the great vessels. now has a huge lump under his jaw, (if you feel under your chin and you can push in on the other side of your bone, that is where it is at) when i say large, i mean about the size of a quarter or larger. I thought maybe it was his lympnode, well she said that it is too far up and too hard to be his lympnode, she thinks it is his jaw bone and that she is going to send us to a specialist and that they would call me the next day, no call, no call no call, i finally called her. They said they wernt sure and would call me back. In this last week it has actually increased in size, if i knew what type of specialist delt with that area, i would make an apt myself. he has another heart surgery in 6 months.

Thursday, January 7 -

Well I called again, he has an appt tomorrow to have it looked at again. I talked to the nurse, she was much more helpful, she is going to have the doctor look at it again, i asked if there was an ultrasound or an x-ray that we can do to define what is causing the lump, she said that would be a good idea. today I was playing with him and there is a red blotchy spot on the skin where the lump is, i was letting him fall back, and i would pullhim up and let him fall again, he would just giggle, but when he tosses his head back to indicate he wants to go back again, that is when i noticed the blotchiness

Friday, January 8 -

Well they took some blood and took x-rays, they think now it is his gland. We will find out the results from the tests in a couple of days.

Saturday, January 9 -

Well, The Dr called (today is her day off) To tell me that all the results to the blood work is normal, and that the radiologist suggested an MRI and a CT scan. So far the lymph-node is ruled out, the gland is ruled out, an infection is ruled out and bone distortment is ruled out. What else could be in that little spot? So, We are being referred to an ear nose and throat Doctor. So more is to come next week!

Thursday, January 21 -

Well We went to the ENT yesterday (ear nose and throat dr. ) he said it is the lymphnode, And that he has water in both of his ears (what a relief) So he is on medication and goes up for a follow up apt in 8 weeks!

Sunday, February 14 -

Hello everyone, just thought i would update on the lump.. after two weeks of medication for the lymphnode, it is still there. the skin is now becoming discolored around the spot of the lump. He has been waking up in the middle of the night the last couple of nights (and i have had to give him tylenol before bed) and tonight he woke up with a fever. i dont know how high, but i am guessing around 101 or 102 holding him made me sweat. His skin felt like it was on fire. so now it is 2:45 in the morning, i think i am going to doze off while in the recliner. He is now sleeping on the couch. Where oh where did the thermometer go?

Monday, February 15 -

Just an update on new information we recieved today.

We had an apt with dr. lewis the ENT (Ear, Nose, and Throat) doctor. The lump is now turning the skin a purple color. the medication did nothing to the lump what so ever. He had fluid in his ears the last time we seen him, and today he still had a lot of fluid. Dr. Lewis has decided the lump needs to be removed. While they will be doing surgery to remove the lump they are going to put tubes in his ears as well. After they extract the lump, they will be sending it to pathology for further investigation on what exactly it is. They are expecting to do this within the next four weeks.

Wednesday, March 10 -
*****UPDATE!!!!*****

So, We went in for the surgery. They put us in an ICU room. They had me put him in a little gown. We waited, and waited. We had to be there by 6am. Just to get the doctor to come in and say that neither the anastisiologist nor the head cardiologist feel comfy working on Demetrius there. They said that they were not equiped with the proper equipment or qualified personnel to treat demetrius if something were to happen. SOOOO his next open heart surgery will be this summer, They are going to remove the lump and put tubes in his ears then. Since he will be at a childrens hospital and not a community hospital. Poor little guy. Well anyways here is a pic of him while we were waiting to find out what was going on.

Wednesday, March 24 -

december, i felt the lump, about a month later it was visible and starting to look bruised, and now, it looks like this. They dont seem worried about it. My husband says that if it turns out being cancer or something serious the Dr’s are going to regret not taking it more seriously. This on top of his cardiac condition, this boy is going to do amazing things when he grows up. He has been handed one hell of a life already!

Tuesday, March 30 -

I called the Peds doctor last week. I requested a referral for an ENT Doctor who is affiliated with the children's hospital where Demetrius has his open heart surgeries. He has an Appointment on friday in Chicago. I hope we hear something!!!!!

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