Busy day....LOL do I say that all the time or what???
Started out at cardiology....We went to a new office and was told it was on St Road 54...when in fact it was on St Road 56......Big difference between 54 and 56..... FUN times.... Selah is fine, just a routine check up. Lots of "discussion" about who is to manage some of her meds.... Basically our pediatrician thinks a specialist should manage them, the cardiologist thinks the neurologist should manage the meds since Selah gets them ONLY because of neurological issues. The neurologist thinks the cardiologist should manage them since they are heart meds..... Mom is frustrated with everyone mentioned.....LOL I gave cardiology everyone's number and told her to fight it out.......
Btw I HATE when I am called MOM by anyone but my 5 kids!!!!!!!! WHY WHY WHY do health professionals do that???? Is it too hard to open your mouth and say Mrs Clanton?????
Selah is wearing a 24 hour monitor as a new patient to record her heart rates, we don't expect any problem from it but it's a pain to have on her till tomorrow.
We got home and had two evaluators for the school system come to evaluate Sarah and Selah for services. One had evaluated Sam before and it was good to see him again. We do not plan on sending Sarah or Selah to school but they can get some home bound services through the school board at home. Sam got services weekly and will start back when school starts in the fall
So Sarah got evaluated between 4 months and 16 months....she is 6 years old. I was not surprised by her scores nor did they hurt to hear. She had a good time with the guy who was evaluating her. He commented on how joyful she was:) She is such a happy little girl. She will love all the services she gets. This afternoon when PT came in, she hopped to her and lifted her arms up! I LOVED to see that:)
Selah is being recommended for services but ....she probably won't get any services without me going MADEA on them....and I'm not sure if I'm up to the fight.
Our public school system is awful here. I had to fight like a crazy rabid dog to get the services Sam had...and then we even had trouble then with people not coming, some odd things happening etc.... It's a shame that the school system is so dysfunctional and doesn't help the kids who need the help!
So after all that, then PT came...my house is like a revolving door....people in and out all day long.she worked with Sarah and Selah.
Late this afternoon Selah stormed. Her heart rate went up during therapy, which is unusual for her . Then it kept going off and she had to get her PRN meds and she came out of it in 5 minutes so I'm thankful for that! It was a storm, her heart rate went over 140 and she began shaking and being stiff. But it didn't go like it usually does so I'm thankful for that. She came right out and calmed down. We don't know what is going on. Praying that she is not sick or starting to get sick. She has no other symptoms.
We were going to go back to the camp meeting but it's too far in case something is going on with Selah. So I guess we will stay home and watch O'Reilly. I'm really enjoying the news right now....LOL We also bought some videos when we were at camp meeting so we might watch one of those. Sam loves preaching, funny little guy will come in if anyone is on tv preaching...and he will sit right down and watch it. It's almost unbelievable how he responds to preaching. Surely he doesn't or can't understand things but you'd never know it by how he acts!
Jon feels like Sam understands it in his spirit.
If you haven't noticed my blog is very close to having ONE MILLION HITS! It's unbelievable and humbling....that so many folks care about our family. In all those hits and all the comments and emails, I can count on one hand, the few negative ones! You guys are such an encouragement to me and I thank each of you for your kind words, thoughts and prayers!!!!
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Public school systems everywhere are unfortunately in a sad state of disarray. Individual teachers are GREAT (had a wonderful, unexpected meeting with my K/Gr 3 teacher a few days ago-very special) but the system as a whole needs help. Not enough funding, poor planning. Teachers are sometimes given a yearly budget of less than $100 for their classroom supplies. Means they end up having to spend their own money on their students. Some schools themselves are in such disrepair that they get shut down due to health/structural concerns. Happened to a family friend a few months ago, she was a teacher up in Canada's north on one of the reserves and the school was shut down for months. Not good.
ReplyDeletePraying things continue to settle for Selah! Your family is VERY loved! Bless you abundantly!
ReplyDeleteJust a thought from a small town peds... I say 'Mom' so frequently because the vast majority of my patients aren't from intact families that share a last name, much less do I know who's married. What I do know most of the time is how the adult is related to my patient, the child. And, it's so east to unintentionally offend, as step-mothers don't want to be mistaken for mother.
ReplyDeletePraying for Selah & your entire family. May God give you strength to continue to advocate for your children, no matter how tiring it may be. 'Mom's' really can move mountains for their child in so many situations (educationally, medically, etc.).
I see what you are saying....but to me, it seems like almost a putdown sometime. I think most parents do not like it. But it happens everywhere, even when I'd have IEPs for Sam at the public school....and I'd think they had all our info, we're in a meeting, they'd address everyone else either by their name or title but yet I was "mom" When I was a juvenile Probation Officer, and had to deal with parents, I'd address them by Mr or Mrs.... if I was wrong they'd tell me LOL
ReplyDeletethank you for reading and praying! As a peds, you probably have to deal with crazy parents like me all the time:) I'm sorry:)
I'm incredibly blessed & absolutely LOVE my calling. Most parents are just crazy for their children & I understand that. I'm a momma too. I am not big on learning parents' names, but love the fact that I know almost every patient by name. Walmart is always filled with hugs, smiles, & squeals of delight for me. I learned long ago that I can't please everyone. And, sad but true, mothers' last names change, a lot! (At least in my community). Traditional married couples are almost an oddity here. To me, 'mom' is a display of respect. It's an honor, whether you are 13 years old or 65 years old. Nonetheless, I do try to honor however a parent wishes to be addressed. And, really, most parents aren't crazy at all, just scared, anxious, upset, excited, etc. when it comes to their child. Thanks for your honesty & openness. Praying for an end to the storms. It's been my main prayer for Selah for months.
ReplyDelete:) I'm sure your patients are blessed to have you:) I know I LOVE our ped and feel like we are on a team together to keep Selah (and the other 4) healthy. As a parent, there is nothing better than a great ped to help you through....
DeleteJust curious, have you ever dealt with a patient that had storms? Any suggestions? A nurse just suggested valium in the form of suppositories so if she had a storm and threw up, she could still get that in her system. She just mentioned it and I thought what a great idea! I called our ped and he just called in the prescription for her. It gives us one more tool to help her!!!
It's over a million now ;) 1000336 ;)
ReplyDeleteMy son doesn't have the level of issues your kids do--but yes, the FL system stinks for kids in the "special ed" category. My son is gifted--but the classes are not gifted, they are accellerated honors. AND he has something else going on, at the very least a learning disability--but he tests so very well, he overcompensates. So he doesn't qualify for any services, even though the school psychologist says "he might be slightly dyslexic". WHAT?????? So now we're going to pay for a private psychologist so we can fight to get him the right help for the fall (he's going to middle school, and it's a magnet school).
I can only imagine how frustrated you are. *SMH*
We'll have to figure out when a good time is for you for us to come visit. I can't WAIT to meet your sweet kids!! Reading your posts about them make me smile :)
Praying that nothing major is going on with Selah regarding the storms. xo