Blessings just keep rolling in!!!!

The goodness just keeps coming and things keep looking up, which truly brings joy to my heart. However, with that being said, this morning started off a little rocky. I received a phone call from Payten's preschool teacher in regards to Payten's IEP meeting, which was today at 8:30 am. The meeting was necessary, in order to keep Payten's IEP current, so I was not upset at all that they were having the meeting without my presence. The teacher and I have talked on more than one occasion in regards to this and I knew there would be no changes made to the IEP as of right now, expect the fact that her placement would be switched from home bond to school instruction. This mornings conversation was to make sure I would be available if there were any questions from any of the member's on Payten's team and to let me know there would be some paperwork I would need to sign, and that is where the conversation turned unpleasant.

 I am not one who likes their integrity or honesty questioned. I try to hold true to these values and I strive to live a life of integrity and honesty, so when that is put into question, it does not sit well with me. Nor do I think it would sit well with anyone. As we were discussing paperwork that I would need to sign, one of the forms the teacher mentioned was, Willing, Ready and Able, meaning that the school is willing, ready and able to accommodate Payten and her needs, but for now, we (Payten's parents) are refusing services for reasons unknown. Which bothered me, for  we are not refusing services for reasons unknown, we have been upfront and honest this entire time that the reason we are refusing services is due to our daughters health, which is severely compromised right now due to uncontrolled seizures. When I said this to the teacher, her response was, "The district nurse has a difference of opinion in which she says that she has approval from one of Payten's Doctors stating Payten can attend school." (which is true, the nurse does have that from Payten's Pulmonary Doctor, however, that is not Payten's issue right now. Payten's issue is Neurologic. So, the statement from the Pulmonary Doctor is correct in that Payten can attend school from a Pulmonary stand point, but from a Neurological standpoint she can not, for her seizures are too severe and too often for her to be safe at school.) Which according to Payten's teacher, she told the Nurse these same thoughts, about Payten's issues and the fact that they are different now and therefore it would fall under a different Doctor's jurisdiction and approval.

Here is the Nurse's response, according to the teacher, "Parents can get a Doctor to say whatever they want, just to get their way. Therefore I am going to go with the statement from the Doctor I personally spoke with and not the statement from the Doctor which whom the parents spoke with. Which states, that Payten can attend school, so the parents refusal to send their daughter to school is not medically justified." Are you kidding me? Seriously? My daughter for the past 2 1/2 - 3 months now has been suffering greatly from seizures and she has the nerve to come in and say we are making that up or making a bigger deal out of it than it really is. How dare she make that judgment. I never went to our Neurologist and ask him to say anything, he brought it up and he told me how he felt and I respected his feelings and adhered to his judgment. I am just trying to do what is best for my child, not what is best for me. So, basically what it boils down to is that they want me to sign a paper stating that I am refusing school for my daughter, just to refuse school, no medical complications to back the refusal, all because a Nurse doesn't believe me? That is ridiculous and makes my blood boil. So I guess when I sign this paper, I will be adding onto the paperwork, a statement saying exactly why we are refusing services at this time and that our Doctor fully backs us on this decision, for it was his recommendation for her to not go to school at this time. Okay, I need to breathe! It's going to be okay! (you just saw Momma bear come out of hibernation for a minute!) Like I said I do not like to have my honesty or integrity questioned, but I guess I just have to chalk it up to ignorance and know that what I am doing is best for my daughter and that indeed I am telling the truth. It just really peeves me that someone would treat us this way.

Even though my day started off a little rocky, with my blood boiling, it got a lot better. We saw Payten's G.I. Doctor, Dr. Horvitz and Payten is doing awesome from a G.I. standpoint. She is growing and thriving and that is all they want to see. Payten as of today, weighs 40 lbs and is 3 ft. 6 inches tall, which put a smile on the Doctors face, for she is happy to see Payten growing so well and looking so very healthy nutrition wise. Payten did however, have a seizure in front of Dr. Horvitz, which made the Doctor a little sad to see, but all in all Dr. Horvitz, was extremely happy with Payten's overall nutrition health. She did send us over to the main hospital to get a KUB X-ray done to make sure Payten's G.I. track was clear and looking good. Which is always a surprise when one of Payten's Doctors, throws in an added twist to our day that is unplanned, but hey it makes life fun, right?!

 It really was not that bad. We only had to wait maybe five minutes and then we got the X-ray which took maybe ten minutes, so we were in and out super quick, therefore it did not even phase us really. On the way back to our car, we stop by Dr. Cooks office and left him a note, letting him know of the seizure activity Payten has still been having and when he called later to discuss the note, we decided to keep Payten on the Onfi at the current dose for another week and see if things have not improved. Which to be honest, even though she has had some seizures, I am still seeing improvements throughout the day. I am starting to see a difference in Payten's overall behavior and she is not hurting herself like she was. Also, I see Payten coming back to us. I feel that I am finally getting my Payten back, that we had lost there for a few months, which makes my heart happy. I can not begin to tell you how that feels, seeing my daughter come back to me, it brings tears to my eyes just thinking about it. It makes me that much more hopeful that we are on the path to full recovery from these horrific seizures and soon she will be back in that good place she was in, back in May, working on walking, talking, eating, etc. Seriously, Payten's life is a roller coaster ride and I feel like we have been dragged through hell these past couple months and now we are finally seeing the light, hallelujah! What a tender mercy this has been in our lives. I am feeling beyond grateful right now!

After Payten's appointment, we went home grabbed a few items, changed diapers, and then were off again, to another Doctors appointment, this time for Emmett. He had his 2 yr. well check today, which went really well. As of today, Emmett weighs 28 lbs. and he is 1 ft. 5 inches tall, he falls into the 50th percentile for weight and 95th percentile for height. He is my tall, thin, blue eyed boy and I love him to pieces. After his appointment, we went home and vegged out for the rest of the night. It was really nice. We also got Zachary ready for nerd day at school tomorrow. I know what you are thinking, he dresses up for school a lot! Yes, yes he does! His class has Wacky Wednesday, every week and each week is a different theme, tomorrow just happens to be nerd day. Here is what we came up with,

 

And this picture below,



I thought I would add just for the cuteness factor! It is Emmett's version of a pirate! Enjoy and have a good night! We love you all and appreciate all your love and support in our daughter behalf.