We laid low once again for ringing in 2011. A very good friend of ours came over for a tenderloin dinner and then a movie. I had actually thought I might stay up to watch the ball drop (well the New York ball) as Avrianna wanted to see it. When I went into her room at 10:30 she was out cold so ...... I got to go to bed too. Guess what.......the new year still came even though we were sleeping, LOL.
Danny has been having more "seizure" like activity, so he did have a 48 hour EEG. I believe we got some good activity while the EEG was on but now we just have to wait to hear what the report has to say. Danny was such a trooper with his head all wrapped up but by the end I could tell her was done with it. Nothing tends to go smoothly so far this year and to start it off was .....what we saw once the gauze was removed -Yikes. He had soars n blisters on his forehead and hair line. We're it sure if it's from a reaction of the chemicals that were put on him for the wires to stick or if the wrapping was just on is head too tight. Either way I'm not impressed about it.
Danny had a bone age scan done, which is just a X-ray of his hand and then it gets sent in for it to be compared to others, showing what his bone size is ........... Danny's bone are that of a nine year old. He's testastrone levels also came back not average for his age. A 6-9 yr old boy should have levels between 10-25, Danny's was.......a jaw dropping 179 ( just about an adult males level). It shows as he has his manly hair growing. I had said I would let his upper lip grow soil more and then laser it off so we didn't have to deal with anymore and I still have my baby face still. Dr Kasper disagreed with me and said he thought Danny would look good sporting a go tee. UM, no not at 7. Would someone tell Danny he IS only 7 so he need to stop growing up so darn fast!Dan had to have a procedure done in the clinic to remove a cyst like thing on his head. The procedure went longer then we thought and the cyst was different then what the Dr had thought so the Dr has sent it pathology .... Now to wait and see what comes of that. When Dan goes. in next week to have the sticthes removed they will go through the pathology report with him then. When we were waiting for Dan to go in, I ran into the lab to get my thyroid test redone because the last time I took has it done it was the lowest it has ever been. The theory is it was so low do to me being on the iv steroid treatment for my relapse. Well after three pokes and now bruises were able to get enough blood to run the test.
Avrianna had a swim meet in Wausau last weekend and she rocked IT. She had 8 events and placed in all 8 of her events. She improved on some of her times and received her first trophy EVER for swimming. It was very exciting and I'm so VERY proud of her. We made it a girls weekend and just us girls went up to them leaving Dan and Danny to do some one on one male bonding time. It was nice for all of us, but I have to admit it was very strange not to be around Lil Man for the night. it been years that I've nit been with him a night and I can count on less then one hand the I've nit been there with him at night. I was feeling alil lost but we all survived :)
Avrianna holding her trohpy proud..along with her friend Evelyn, Grave and Lauren
Her trophy....she placed 6th on her age bracket for the whole weekend :) Way to go Avrianna!
Monday Danny had to have his ITB pump refill so we went up to Green Bay. Once there we found out that the process has now changed and Dr Edgar no longer refills the pump his nurse does. I was bummed to say the least as i was hoping to hit him up on the EEG that was done to see if he had seen it yet plus i just like chit chatting with Dr Edgar. After the second attempt at poking to find the port access and Danny getting upset I requested the nurse to get the Dr so he could do it. Danny was very upset as the nurses was really fishing to find the port so much that she bent the tip of the needle, grrrrr. Why is it that people think that if Danny can't be heard and because he can't flail around like typical children they must not be in pain. The little boy is a living, breathing, feeling, human and MY son so act like it! One shot and Dr Edgar got the needle right where it needed to go :). I did ask if he read the EEG yet and he hadn't but he said he'll get out the large pot of coffee and take a look. We did go through some options of different meeds for me to look into IF www felt there needed to be w change after we see what kind if activity is going on. Once it was time to leave Danny really started to go to the ugly cry....crying over the trache and he was heard loud in clear, then the lip....yeap it's back and he knows how to use it. Ugh- didn't help me keep my stress level down i can tell you that. So we went out to eat (yeap I had to share my strawberry smoothies with him) and some retail therapy.Yesterday I had my follow up appt with my endocrine doctor for my thyroid which was pretty much a waste of time as the labs that were drawn where never processed so he didn't have any recent number to go by so........ You guessed it back to lab. 5 pokes later and a very large hematoma in my hand they got blood, grrrrr. I was pissed to say the least! My numbers are still low but not as low as before :). Next week i go back for an ultra sound to see if the growth in my thyroid is getting any bigger and the i go back to see the Dr to go over all the findings.
Tomorrow bright and early I go in for surgery to have a med port placed in my chest. I'm not sure where they are going to find a vein to put the IV in but I hope they knock me out curtsy before they start digging as I'm sower ands bruised all over my arms n hands already. I am really looking forward to taking a good nap but not so much the puking afterwards as I always get sick after being put under. We'll see how I am feeling and if not too bad I will post on how things went
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