ashley had

a little bloody nose today and boy did i get nervous. she hasn't had one since but boy have i been watching her. i sooo don't want to go through that again. i know that they can do something for it but it is still so nerve wracking. next thursday she gets her platelets checked again, i just hope that she doesn't drop again because i don't want to go through that again. the main fear with her platelets being that low is an internal bleed and them not being able to stop it. i hate this. i have never been a scared parent, you know, nervous about every little thing but i feel like that now. i feel like i am bugging her soo much even though she probably doesn't even notice when i am checking her over at bath time to see if she has any excessive bruising or spots. i cannot wait until these 6 months have passed and we know for sure or not if she has the accute form of ITP or the chronic form.


ohh and to top all of this crap off my sweet sweet baby nephew might have cystic fibrosis. i am sooo scared for him. he is only almost 20 months old. for sure we know that he has pancreatic enzyme deficiancy and he takes enzymes with every meal to help him digest the foods and not be in sooo much pain.

anyway they did two sweat tests one being 41 and the other one being 30. my sis said that depending on who you go by either number is borderline for CF. anyway at the last dr's appt the lung specialist gave them a bunch of information on it, most of it saying that more then likely he has CF. this is what my sis wrote regarding what the pulmary doc said

"This update is about his last hospital visit to stanford.

ok, the sweat test number was 30 this time. They like to have 2 numbers. so they have 30 and 41.

depending on who you ask, 30-60 is borderline, or 40-60 is borderline.

Eitherway, he ordered the full panel genetics test which is what we have been wanting, YAY!!!

90% of ppl with pancreatic enzyme deiciency (which kaiden has) have CF.

You have to have 2 genes to have CF. he said there is a 1% chance that he HAS CF but no mutations show up on the panel because they are still unknown. If that happens they will do other tests like throat cultures, and if those come back positive, than he has CF.

There is a 20% chance that he has CF but only one gene shows up. In that case he would be labeled with CF (not a carrier) because he has the pancreatic insufficiency. and carriers dont exhibit symptoms. so one gene would be unknown.

Thats pretty much it. 2-4 wks for the results of the gene test "

anyway he got the full genetics testing done the day after (or was it two days after) easter. so right now we are just waiting and waiting and waiting. i feel like this has been going on FOREVER and i know that i am sick of it and since i am dealing with ashley's thing i KNOW that heather and neils are sick of waiting too.

here is a link about cystic fibrosis
http://www.cff.org/AboutCF/

PLEASE SEND ALL THE GOOD AND POSITIVE THOUGHTS THAT YOU HAVE TO OUR FAMILY and if you believe in god then PLEASE PRAY FOR US TOO.

I'M A 38 OR 41

Depending on how well i know someone with regards to question 3 LOL


Here you go. Try this! Below is Dr. Phil's test. (Dr. Phil
scored 55; he did this test on Oprah - she got a 38.) Some folks pay a lot of money to find this stuff out! Read on, this is very interesting!Don't be overly sensitive! The following is pretty accurate and it only takes 2 minutes. Take this test for yourself and send it to your friends. DON'T PEEK, but begin the test as you scroll down and answer. Answers are for who you are now --- not who you were in the past. Have pen or pencil and paper ready. This is a real test given by the Human Relations Dept. at many of the major corporations today . It helps them get better insight concerning their employees and prospective employees. It's only 10 Simple questions, so grab a pencil and paper, keeping track of your letter answers to each question.Ready??

NO PEEKING AT THE SCORES UNTIL YOU ARE DONE WITH THE TEST
Begin.
1. When do you feel your best? a) in the morning b) during the afternoon & and
early evening c) late at night
2. You usually walk... a) fairly fast, with long steps b) fairly fast, with little steps c) less fast head up, looking the
world in the face d) less fast, head down e) very slowly
3. When talking to people you..... a) stand with your arms folded b) have your hands clasped c) have one or both your hands on
your hips d) touch or push the person to
whom you are talking e) play with your ear, touch your
chin, or smooth your hair
4. When relaxing, you sit with.... a) your knees bent with your legs
neatly side by side b) your legs crossed c) your legs stretched out or straight d) one leg curled under you
5. When something really amuses you, you react with... a) big appreciated laugh b) a laugh, but not a loud one c) a quiet chuckle d) a sheepish smile
6. When you go to a party or social gathering you.....a) make a loud entrance so everyone
notices you b) make a quiet entrance, looking
around for someone you know c) make the quietest entrance, trying
to stay unnoticed
7. You're working very hard, concentrating hard, and you're interrupted... a) welcome the break b) feel extremely irritated c) vary between these two extremes
8. Which of the following colors do you like most? a) Red or orange b) black c) yellow or light blue d) green e) dark blue or purple f) white g) brown or gray
9. When you are in bed at night, in those last few moments before going to sleep you are.... a) stretched out on your back b) stretched out face down on
your stomach c) on your side, slightly curled d) with your head on one arm e) with your head under the covers
10. You often dream that you are... a) falling b) fighting or struggling c) searching for something or somebody d) flying or floating e) you usually have dreamless sleep f) your dreams are always pleasant

POINTS:1. (a) 2 (b) 4 (c) 6 2. (a) 6 (b) 4 (c) 7 (d) 2 (e) 1 3. (a) 4 (b) 2 (c) 5 (d) 7 (e) 6 4. (a) 4 (b) 6 (c) 2 (d) 1 5. (a) 6 (b) 4 (c) 3 (d) 5 (e) 2 6 (a) 6 (b) 4 (c) 2 7. (a) 6 (b) 2 (c) 4 8. (a) 6 (b) 7 (c) 5 (d) 4 (e) 3 (f) 2 (g) 1 9. (a) 7 (b) 6 (c) 4 (d) 2 (e) 1 10. (a) 4 (b) 2 (c) 3 (d) 5 (e) 6 (f) 1 Now add up the total number of points.

OVER 60 POINTS : Others see you as someone they should "handle with care." You're seen as vain, self-centered, and who is extremely dominant. Others may admire you, wishing they could be more like you, but don't always trust you, hesitating to become too deeply involved with you.

51 TO 60 POINTS: Others see you as an exciting, highly volatile, rather impulsive personality; a natural leader, who's quick to make decisions, though not always the right ones. They see you as bold and adventuresome, someone who will try anything once; someone who takes chances and enjoys an adventure. They enjoy being in your company because of the excitement you radiate.

41 TO 50 POINTS: Others see you as fresh, lively, charming, amusing, practical, and always interesting; someone who's constantly in the center of attention, but sufficiently well-balanced not to let it go to their head. They also see you as kind, considerate, and understanding; someone who'll always cheer them up and help them out.

31 TO 40 POINTS: Others see you as sensible, cautious, careful & practical. They see you as clever,
gifted, or talented, but modest. Not a person who makes friends too quickly or easily, but someone who's extremely loyal to friends you do make and who expect the same loyalty in return. Those who really get to know you realize it takes a lot to shake your trust in your friends, but equally that it takes you a long time to get over if that trust is ever broken.

21 TO 30 POINTS: Your friends see you as painstaking and fussy. They see you as very cautious, extremely careful, a slow and steady plodder. It would really surprise them if you ever did something impulsively or on the spur of the moment, expecting you to examine everything carefully from every angle and then, usually decide against it. They think this reaction is caused partly by your careful nature.

UNDER 21 POINTS: People think you are shy, nervous, and indecisive, someone who needs looking
after, who always wants someone else to make the decisions & who doesn't want to get involved with anyone or anything! They see you as a worrier who always sees problems that don't exist. Some people think you're boring. Only those who know you well know that you aren't.

well i guess i haven't posted in a while LOL

a lot has been going on and i have no idea where to begin. sooo i guess i will start with my hubby's job. he loves it the only bad thing is that he works out of town a lot. he was just gone for the week and home on weekends but then they got another job in salt lake city utah. soooo the plan was for him to be gone three weeks, then home for four days then gone for 3-4 weeks and then home and then i don't know after that LOL my guess would be is that it would go back to the other routine of being gone one week and home on the weekends.

dyllan, ashley and i were handling it okay, i mean i don't care for being a single mom but thank god i have loving family around me LOL the first weekend that jason was away, my mil and fil took the kids for me for the whole weekend and OMG did i enjoy myself. okay so you might of thought that i would have just been lazy and relaxed and done ABSOLUTELY nothing right? WRONG LOL see i can never clean my house in peace anymore since i work in the mornings and pick ashley up before i even get off of work, sooo when i get home to clean i have her with me. well i don't like to clean with anyone in the house LOL so needless to say, i don't clean as much and as well as i used to. soooo while my kiddo's were up and the grandparents house i cleaned my whole house THOROUGHLY LOL and i enjoyed every minute of it. cleaning relaxes me as long as i can do it with out the kids there. man i miss not working LOL so that is what i did when my cute messy kids weren't here LOL pretty sad to most ppl but totally awesome for me LOL.

okay so we were done with him being gone two weeks and starting into the third week and jason was going crazy, AND I MEAN CRAZY he was soooo cranky it was unreal. i kept trying to get him to chill out but there was no talkin to him LOL. anyway saturday and sunday pass and then monday comes and ashley and i head off to work at imogenes (spring break for her) and around 10 she starts getting this bloody nose. i didn't think anything of it because it wasn't a bad bloody nose just a little leak kwim? basically just filled her nose and then she would blow it out and such and then it would fill up again etc etc. i still didn't think anything about it because she has bad allergies and figured that her allergies were causing the bloody nose. okay so the day goes on and that evening i gave ashley a bath and washed her hair, and that is when i noticed these little flat looking blood blister type rash all over her belly, butt, back and legs and she had this HUGE bruise on her knee that i know she didn't have earlier. so at this point i am kinda freakin a little, and i don't freak out very often. so after talking with my wonderful friends on LP and SCRAPBOOKITWRIGHT that i should take her in the next day. so that was my plan, well on tuesday morning (i had her sleep with me because i was sooo nervous) i checked on her and she had even more spots AND TONS MORE BRUISING, so promptly at 7am i called and made an appt, they couldn't get us in till 2pm which sucked but ohh well what could i do. soo we go to work and i wait patiently (YAH RIGHT) for her appt. soo i take her in and the doc (her ped couldn't see her because she was booked) saw her and was surprised with all the bruising and spots. sooo he went to confir with ashley's pediatrician about what could be going on.

sidebar: when i showed up to the doc appt our insurance wasn't working and at first they weren't going to see us unless i paid cash. WELL I FLIPPED OUT started crying and saying that she needed to be seen. then i walked out to the bathroom and collected myself and came back, picked ashley up and showed them what was going on, so they had me sign something stating that i would be seen if i paid later or got the insurance figured out. boy was i pissed off there for a sec LOL

anyway the doc comes back, acutally i think he is a PA but not sure, anyway he comes in and says that they think that she has ITP (immune thrombocytopenic purpura) and that it is a platelet disorder and an autoimmune disease. so he orders blood work. so i take her down and get the blood work done after i picked dyllan up from school. she did really well. didn't flinch or cry or anything LOL she is sooo brave and strong and fearless. soooo i drive back home and try to get this insurance thing straightened out and as i am on the phone with him the doc calls so i asked him to hold on, the doc tells me that her platelets are only 3 (3000) out of 150-450 (000) i immediately started bawling because i knew what that meant, she could bleed out at any time. the doc told me to get right to the er and he would call so they would get us in right away. so i clicked over to my insurance person, of course i am still bawling and i tell him what is going on that this insurance stuff needs to get figured out NOW. he told me to calm down, that we have insurance it is just a comp glitch, he said for me not to worry and to get my daughter to the hossy right away. so that is what i did. my mil sue met me there thank god because i was a wreck.

so we get into the er room and the on call doc tells us what is going on and to make sure that she doesn't do anything at all and that they were consulting with a hemoncologist at uc davis. so that specialist calls back and says not to treat her, and we are sitting there going WTF what do you mean not treat her. soo the on call doc called a specialist at sutter childrens hospital and he said to treat. okay that made me feel better.

okay keep in mind that my poor wubby was out of town in utah. so now he is taking an emergency flight home because we had no idea what could happen. i felt like i could lose her at anytime and it was the most scariest thing that i had ever felt in my entire life and jason was feeling the same way. my mom and dad were on their way up as soon as they found out and my sis and bil said that they would take dyllan for us because he was VERY scared and thought his sister was gonna die. so it was best for him to go with them to get his mind off of this.

okay so a little bit later ashley's ped shows up, I LOVE HER LOL she didn't have to come because she wasn't on call but she did and i am sooo thankful for that. so she comes in and explains everything to us in great detail and gave ashley a thorough exam. she explained that what the treatment was and how it worked. the treatment is IVIG and it works by tricking the spleen to quit getting rid of the platelets. see what happens with ITP is that the antibodies get confused and start attaching the platelets, and then the spleen sees the platelets as bad and gets rid of them. so the IVIG was supposed to trick the spleen into not doing that. okay so this medicine is very hard to get a hold of. we got to the hossy at 4pm tuesday night and they weren't able to get the medicine until 9pm and hooked up to her by 10pm or something like that and we didn't get a room until almost 10:30, so we sat in that little er room from 4 until almost 10:30 LOL. now ashley was fine, you woulda had no idea that she was soooo sick if she didn't have all those horrible bruises and all of those red spots.

anyway we started the first treatment then got our room and then i layed down with her and snuggled and tried to get some shut eye and then my wubby came. boy was i sooo happy to see him. there was one mean nurse that tried saying that he couldn't stay and we were like SCREW YOU BITCH so we had jason sleep with ashley (you know visiting her) and i slept on the cot. the next morning they checked her platelets and they had dropped to 2000, well we were freakin again. dr valdez came in and said that we would do another treatment at full dose. sooo later that afternoon (wednesday) they started the next treatment, i think it was around 5ish that they started it. anyway at 4am thursday morning she started pukin with blood in it and OMG WERE JASON AND I SCARED. so they gave her phenigran but it didn't work and she kept pukin and one of the times she puked she GRABBED her head and jason and i got really really scared at that point, i mean we were thinkin of a brain bleed or something. the nurse kept checking her eyes and they were okay so we just had to wait for dr valdez to come, but in the mean time she got more blood drawn to see what her platelets were at and then we wait some more. okay so FINALLY at 830 dr valdez comes in and tells us that her platelets were at 26000 WOOHOOO BABY. we were so relieved LOL now granted that is still low and she still had to be very careful but hey it is way better then 3000 LOL now the way ashley was feeling was side affects of the medicine. so that made us breathe easier. anyway we got released that day (thursday) with the strict instructions that ashley had to be very careful, no running, jumping, climbing, skipping etc etc. soo we had a very lazy weekend LOL.

on monday she had another blood draw and her platelets are now up to 417000. hearing that news was the best news ever. we were all very excited and ashley said the cutest thing ever when i told her that she could play normally again, she said "NOW I CAN RUN TO YOU AND GIVE YOU A HUG" and then she did just that LOL it was sooo cute.

anyway its not over yet, we still have to monitor her platelets because the medicine usually lasts 3-6 weeks, sooo we go back in 2 weeks for another blood test and sometime soon a specialist should be calling me with an appt for us to go see him.

i will post pics in my next post of what her poor little bruised body looked like and how brave she was getting her iv and some hossy pics.

thanks for reading