Thursday, May 3, 2012

me again!!

I feel like I have enough crap going on in my life and have had enough crap that has happened in my life that triggers enough doubts and paranoia and anxiety and tears.... LAST thing I need is for Madies beloved school to be giving me those feelings on TOP of what I already experience! Just the other day I get Madie out of her chair and get her in the car at pick up...she is SATURATED in her tinkle. Like thru her diaper...thru her pink pants and onto the cushion of her chair(which is thankfully easy to remove and clean). At this point everyone is scurrying off to their cars with their moms and dads and grandmas...teachers are going back into the building to get ready to go home as well. I am baffled. All I can think is how long has madie been sitting in her chair today? I cant emphasize enough how much I want her to be sitting OUT of her chair..even if its at the table in the nifty strap-er-in chair or on the floor or on a beanbag chair etc etc..not in her "wheelchair"..:( On Tuesday when I brought it up I was told that she was checked and that she had been given alot of water and probably went as they were wheeling her out... nah..this was alot of tinkle! I felt kinda blown off!! SO yesterday on Wed....the teacher says she feels guilty about Monday and is so so sorry that Madie was soaked like that and that they dont keep her in her chair at all times and that she is part of the class, shes a huge priority etc etc etc..super humble apology. I wanted to cry..My Girl cant tell anyone that she is uncomfortable..she doesnt understand and cant tell me what happens in her day...she cant tell anyone that her bottom is wet. She just sits in it. Your guess is as good as mine about what went on that day...but they sure were humble in apologizing about it which kinda blew me back after Tuesdays explanation. WELL come to find yesterday that Miles had in fact called the school and left a "nice message" that he did not appreciate what had so many words... Im just not an assertive person...I dont like to fight with people and I don't like to come across as a total bitch..UNLESS it has to do with my husband (like perhaps beating the crap out of any woman who is trying to get "wit my man" as they say in the ghetto) or anyone who is trying to mistreat or make fun of my child! Im not afraid to be possessive when it comes to these things in other words...I can be crazy if I need to be. SO as I ponder what happened and hope that it never happens again...I think of all the good the school has done for madie...getting her lots things for free and coming across as such loving people with my girl. I have always felt as if I was bringing her to safe place.. a loving place...a understanding and patient place...Which is mainly what made me want to cry when I see that she was not noticed for simply a wet diaper. All is good now. I want to say we are ALL in a good place now. I dont ask for daily diaper changes and obsessively checking her every 5 minutes...Just make sure. ya know? I have a wonderful Hubster who kinda becomes the assertive one and is not afraid if folks hate him as long as the "shit gets done" and the wife stays happy! lol! Oh Mr Miles. xo WEll in other news...Nuero follow up went well..we discussed how she has been drop seizing quite a bit and hitting her noggin on the hard wood floors..It seems to always happen when I am not watching...she is quite the squirmy kiddo..can be sitting in one place we call the "safe zone" one minute and the next she is in what we call the "fall zone"... and CLUNK! Soooo there was talk of getting her some head gear. My dear friend Cami's Mamma gave me Camis old helmet awhile back and well..kiddos head is pretty big now! Sooo we go in Monday to get her head measured...quick and easy :) I hate helmets. I really do. Its like I know my daughter is disabled...lets make her look the part more! I am in no way trying to offend others who have to wear helmets but I guess I always had that "not my kid" thing in my head... :( It will be quite a relief at the same time to have I can turn my back and say type up this earth shattering blog with no worry that she will whack her head! :D I can also do crazy things like check the dryer and wash bottles!! INSANE I know! Nuero ALSO recommended we increase her Depakote. Its been a long time since we had a med at least 2 years! Shes 5 now and I guess its time...A two week trial we will give it..and if we see no more drops that we can continue as long as she tolerates it well and is not totally drugged up. Blood work in June too. :) I hate medicines...I just hate em. I cry when I think of Madie on zero meds with zero seizures and how she could be! Stilllll 2-3 giant seizures per month....:/ We continue to chug along with the Ketocal (ketogenic) Diet..Sometimes she doesnt want to eat and gags like crazy..sometimes she will eat nearly 4 big bottles a day..I am desperate for her to eat real food...I am so tired of washing bottles and bottles and bottles...shes FIVE! :(!! We always avoided feeding tubes I was determind to NOT have her on one..and we have never had to. I blame myself at times for not being tough love with foods... We are ALSO going in for another Barium swallow study to make sure that madie can swallow properly..pressure from the school to get one saying that she chokes on pure' foods when try. I cannot say enough...SHE CAN SWALLOW! ITS THE MECHANICS THAT SHE HAS TROUBLE WITH!! In case you are unaware of what a Barium swallow study is its basically watching Madie eat while being x-rayed as they lace water and whatnot with Barium that glows! :) Kinda cool stuff actually..looks like toothpaste..Madie was 2 on her last one and she gobbled the stuff. Im always game for wearing a led vest too. Lol we will go in nxt couple months hopefully when GI calls us from htfd. I am sitting here thinking if there is anything else... Id say I was due for a good update. Madie is feeling better from a yucky cold as well thank goodness! Sicky Madie is NOT FUN! back to her whistles and giggles. Till Next Time Me.

1 comment:

Reagan Leigh said...

Totally know how you feel about the school! I have a similar issue wIth our nursing agency sending out incompetent nurses!!! Just because my daughter is disabled, doesn't mean she deserves second rate care!! And as far as the feeding tube goes...we fought it for years but it's the single best thing we ever did. Now we don't have to worry about her not getting all of her medicines and we don't spend the entire day trying to get food in her! (you know some people just use them for meds and additional nutrition or water but still eat the majority of their food by mouth!)