It is beyond frustrating, as well as emotionally draining. I am at a loss as to how to help her. It is so hard, for the Neurologist told us, that all of these set backs, meaning her respiratory status, sleep apnea, reinsertion of the trach and increased seizures, are all signs of her diagnosis progressing and her brain atrophy worsening. I know that we were told all of this at the beginning, when we received Payten's diagnosis, and it is one thing to understand and know that it will happen, but it is another thing to watch it happen. I know when we were in the hospital, after the Neurologist shared with us their feelings about all of Payten's complications being Neurological and due to her diagnosis; we asked if they were planning on doing another MRI, in order to make absolute sure that this was really the cause of all of these issues. Basically the Neurologists response was, there is no need for an MRI to be done to know that this is Payten's diagnosis progressing, all the MRI would do for us, is show us how drastic the progression and atrophy is. Which a part of me really wants to know how drastic it is, but the Mother side of me does not want to know, for all that will do, is only solidify how much closer we are to death and as much as I want to know how much time we have left, I don't want to know, if that makes any sense. I can't fully explain it, all I can say is that it is hard and these seizures make it that much harder. They are seriously taking their toll on me and I hope we can control them soon, for I am done and I know Payten is too, bless her heart!
Payten passed out directly after her seizure and she did not wake up, until we arrived at Physical Therapy, so you can imagine how that session went. Correct, not good! Throughout the entire session, Payten would,
Sit up nice and straight, then she would,
FALL!
This pattern went on, back and forth the whole entire time. Payten could not hold the position like she normally can, all because of her lack of muscle control/weakness, which is all due to her seizures. Not only was she having trouble sitting, but it was the choice of sitting that Payten was making, that became one of the major problems we were having at PT today. Payten kept choosing to sacrum sit, meaning she was using no core muscles at all to sit. Here are a few photos I captured of Payten sacrum sitting,
Before I go further, I just want to clarify, these different pictures of Payten sacrum sitting are not PT approved, even though you see her therapist in the pictures, smiling. The moments in which the therapist was captured, were moments when she was allowing Payten a break and showing Payten some love and compassion, before forcing Payten to go back into a sitting position that Payten had so desperately fought to get out of. I just wanted to clarify that so none of you thought it was something that was condoned by her therapist. These pictures show, just how bad Payten was struggling sitting. Even Payten's PT kept saying that this was not Payten and how bad she felt that the seizures were having such a devastating, declining impact on Payten. So I am not the only one that sees it, which worries and stresses me out even more, for I sometimes wish I was crazy and that this was all a dream, that I would wake up from it and find my sweet Payter Tater happily at work and fighting strong.
As hard as it was for me to see Payten have a seizure this morning and then struggle because of that seizure, there were still highlights to my day, one being Emmett and the things he did while we were at PT. How thankful I am that I was allotted these moments with Emmett, for they truly helped to ease the pressure and stress that was weighing heavily on my mind during PT. Here are some pictures that I was able to capture,
Emmett found the bubbles and he finally got the hang of it
and was able to blow some bubbles on his own!
The pictures below are more of
Emmett working hard at blowing bubbles!!!
Look at him blow!
Finally, he was able to blow more than one!
He was so proud of himself, he would not stop
blowing them!
And this last picture below,
is of Emmett pretending he was lion and giving me his best lion impression!
Seriously, this kid is the cutest and I love him to pieces!
He makes my heart happy!
Another highlight to my day was when my other kiddos brought home their school pictures! Finally I have updated pictures to hang on my wall and they are cute one's to boot! Which makes it that much more sweet! Here are their school pictures,
Zachary age 10
Makenna age 7
Aren't these two pictures the sweetest and these two kids the cutest?! Well, even if you don't think it, I do and that is all that matters! Unfortunately, the highlights did not last and we had a few bumps later in our day. One of these bumps being Makenna and the parent teacher conference we had today. Seriously, I am so sick and tired of people/therapist/teachers, telling me what is wrong with my children! For once I would like to have a therapist or teacher call me in for a meeting to give me good news, but no, that never happens, at least it doesn't for me and I am beyond sick of it!
Let me explain, Makenna's teachers feel that it would be extremely beneficial for Makenna to be held back a grade, due to social and emotional maturity. They feel that she is behind her peers in these areas and feel that by holding her back, it will help improve these areas she struggles with. When Joseph and I asked if any of there reasoning for holding her back was due to academics, they said, No. There exact response was, she is at grade level and above grade level when it comes to academics, however she is just not socially ready to move forward. Now, I am going to use a quote my son Zachary said tonight, "What does socially being ready, have to do with academically being ready?" And all I have to say is, Amen, Zachary, Amen!
Joseph and mines feelings are this, Makenna is only seven, she has time to mature and grow, therefore we feel that it is too soon to determine whether she is emotionally/socially behind and we also believe that this might just be who our daughter is, shy and reserved and by holding her back, it will only shove her further into her shell and not out of her shell. We tried to explain the stressful home life we have and that we feel it could be contributing to her issues at school and they agreed that the stresses of home could be contributing, which we then followed with the question of, How will holding her back change that? Their answer was, it wouldn't. Now, please do not get me wrong here, I am all for holding a child back if it is absolutely necessary, because of academics, etc. but I know my daughter and I do not believe holding her back a grade will solve the problem they think it will. Therefore Joseph and I stood our ground and basically we left the meeting with the topic at hand unresolved, with another meeting scheduled for next week, in hopes that they can further try to bully us into their way of thinking in regards to holding our daughter back. I am starting to feel like it might be time to find a new school or start homeschooling, for I am tired of these teachers and schools applying this one education fits all act, for I believe every child is different, therefore every child needs different things and different methods of teaching. Why is that so hard to understand?!
All of this new stress, on top of Payten's complications, sent me into a complete shut down mode, for my mind and body could not take it any longer. Then when I felt as though I could not take much more of this insanity, I opened the box from Apria health care, which is the supplier for Payten's medical supplies and find that they shipped the wrong stuff. Really?! Really?! Here is a picture,
I know what you are thinking, it is a trach, so then what is the problem? Well, let me tell you what the problem is, this is not a pediatric trach, rather this an adult trach, which means it is much bigger in diameter and length. Now, here is a picture of a pediatric trach,
Can you see the difference?! I hope so, for the difference is Huge. Now you can sort of understand why I said our discharge from the hospital was the discharge from HELL, for this is the type of incompetence I was dealing with! And that is not the most frustrating part about it, the most frustrating part is the fact that both places have been dealing with our daughter for five years now and they make a mistake such as this. Rally?! They don't know our daughter is not an adult! And not only that, this mistake with trach now leaves us without a spare trach, which is very risky and dangerous. So for them to make such a mistake, is very unprofessional and extremely frustrating on our end, for it causes us bigger headaches, that we have to fix. So now you know what I will be doing tomorrow, making phone calls to try and get the right supplies shipped out to us.
Then our night ended with Payten having more seizures, which left Joseph and I utterly drained, both emotionally and physically, which is not how we wanted to end our day. I seriously wonder when all this madness will end, because all I want is to have something go my way! I just want to feel like I have control over something and I don't, no one does and that frustrates me! As much as I love my life, I did not love today and I am very thankful it is over. I hope that tomorrow brings a better day and that we can find relief for Payten, a solution for Makenna and the right trach supplies for Payten! Thank heavens there is always a new day ahead of us, for I certainly need a new start tomorrow! Thank you dear friends for all your love, prayers and support. May God continue to bless your lives and may you all have a good night!
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