Wow summer is gone already! Boys started school today! Well Andy n Adam did anyways.. Austin has been sick and couldnt go today... The summer has been full of fun and excitement around here as always. The heat has been torturous but we survived, sometimes I think barely tho.. It has been hard to keep Adam AND Austin inside with the heat so bad. The heat it affecting them both now, not just Adam.. Austin's bday was good, hard to believe he is 7! Andy had his Bday the 2nd of Aug and is now 16!!! where has the time gone?? He's not a baby anymore!?! Adams bday is just a few days away and he will be 6! Jeff FINALLY has a job!!!!! hoping thing will be on the up swing now...
Phoebe is doing well, treatments for ur Immune are going great. she barely fights us anymore. Her behavior at daycare is up n down but lately more ups than downs! yay ! No word on Pre K yet, so just waiting to hear, they may get it going like last year mid semester..She really wants to go to which surprises me honestly.. She is getting so big and still NEVER know whats gonna come outta her mouth! She is such a riot! Her behavior at home has been rather trying though, and her inability to sit still at all has let me to make her an appointment to see the new Psych Dr.. thats in Sept, so we will see...
Andy is doing great, he has had a wonderful summer and i think he really enjoyed having it off! He is turning into such a young man.. He has his moments, but for the most part he is doing awesome with behavior and everything.. I am so proud of him! We finally found a new Dr instead of DrHD.. Its DrG in centerville.. She is an awesome doc! Pretty close to DrHD! I am so psyched to have found her! She is going to be seeing all 4 kiddos.. Andy's health has been really good this summer and he has even lost 10 lbs! yay Andy!
Adam has been , wow whats a good word.. I cant really think of any other than handful! His behavior has been horrid .. Again like last summer! It has to be the heat! its been awful and even tho he hasnt been out in it a lot its still getting to him and the mito has def affected his brain ! Other than behavior, he seems to have 'stabilized". Pain meds are working, Tummy meds are working.. he is using his Cpap nightly now w/o a fight YAY! Only thing we have done is we have added O2 to his cpap at night and just O2 during the day when he sleeps or lays down for his "rest". This has seemed to help some of his behavior and I think its cuz he feels better, like a breath of fresh air.. Weve been doing this for 3 weeks now and he is doing great.. he is much more pink when he sleeps, and after all night on it, he wakes up with less "dark rings" and not so tired looking.. So I think it is helping some at least .. and when we take the spot O2 sats, theyve been normal! Today , his first day of school he had a Great first day!!! I am soooooo proud of him! I just hope that it continues!
Austin has had some up and down behavior at Daycare.. Even was suspended for a week due to his behavior.. not sure why he was acting up so badly.. but he did end it on a good note! thankfully. Even if his last day there did scare the girls! He was super quiet, pale, lethargic at times, "shivering/twitching" and just not himself.. this was on Wed.. well by wed night he looked ashy/blue so I took his O2 sats.. 87%!!!! could only get it up to 94%.. lethargic laying around , not talking, spaced out, twitching, but no fever, no anything! so we went to ER @ Glennon. They did a metabolic work up and his metabolic panel was abnormal, his cbc 2// auto dif was abnormal .. his CK levels were almost 100 points higher than they should of been.. Which indicates breaking down of muscles:( When we got to the ER they took his temp and it was 103.8! wth he didnt have one when we left!! then it came down, and then went back up to 104.4 was the highest we seen! So they check him out and tell us that they think he has either had some sort of seizure and/ or a dysautonomia storms... where the brain goes realy haywire! So we go back on Monday for an EEG ..and Wed we go in to see the Neuro.. its so scary seeing your "baby" just lay there and not wanna or cant !! So we will hopefully have some answers after that!
Met his teacher today and they are both awesome!! I really think it will be a good year with them! I am really excited bout that! Austin has been out at Chakota Therapeutic Riding Center every week all summer and LOVING the horses! Riding, grooming and just hanging out ! :) Its been an awesome summer doing that! Ive been volunteering out there and he's been going out there and its been great!! He has been so super excited about it that he even has a "new horse" (fav horse.. Babe has been put in the barn for now! ) His new fav is April!
Well Im off to bed, im exhausted and am going to try to volunteer tomorrow.. hmm dunno with the way Austin has been feeling , its gonna be a wait n see at this point..
Good Night & God Bless!!!
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