A little while back I wrote a post entitled, SHE'S WITH ME. In that post I wrote about Collin Raye and about his grandchild and the song he wrote for her. I talked about how grateful I was for the song and how it related to Payten and how it expressed every feeling I have ever felt regarding her life. Today I came across this music video by Collin Raye and it shows his precious grand-daughter! What a beautiful little girl. Thank you Collin Raye for your beautiful song, it has truly touched my families heart. I posted this video for you all to enjoy! Thanks!
Saturday, September 25, 2010
Thursday, September 23, 2010
Payten Working hard at Physical Therapy!
Yesterday was an incredible day for Payten! She did fa nominal! Just when you are down and discouraged, she does something AMAZING and helps you regain all hope! I love my Payten for that! Surprisingly she was in a good mood for Physical Therapy. She has not been sleeping well at night and is still having issues with her trach. She is having tons and tons of secretions and plugs in her trach. So it was a good thing to see her happy and motivated to work as hard as she did yesterday. In the video's it shows her on her tummy doing some weight baring exercises through her arms, which this is the best job she has ever done thus far, so I was excited that I captured it on video. Sorry there is no sound. I don't know why the sound does not work because it works on my phone! Who knows! At least I got the video's posted, sound or no sound, I tried all day yesterday to post them and couldn't, so I am just ecstatic that I got them up on my blog! I hope everyone enjoys watching them. I could not decide which one to choose so I posted all of them.
There is also a couple video's of her working on her sitting and weight baring through her arms while sitting. Another thing that she did yesterday that was the best she has ever done before. Maybe Payten needs to go without sleep more often! (just kidding) It makes me wonder sometimes why we have really bad days and then really good days? Why can't we just have a few really bad days, get better and then have really good days that out weigh the bad? Oh if I could be in control, what a grand thing that would be!
Also, today we saw Dr. Panesar and I told him everything that was going on with her health. He is not sure if it is still her sinuses or if it is her lungs or if she has some sort of respiratory infection. So he sent us to get some X-Rays of her sinuses and lungs and he wants a trach aspirate culture in hopes that something will give him an answer as to why she is doing what she is doing. He believes that he will probably need to bring her in and do a Brochoscopy next week, to clean out her sinus cavity and lungs. Lets hope that whatever is decided will help Payten and give her some relief soon.
At least through it all she is still SMILING! It truly amazes me how strong she is. I hope you enjoy the video's and please keep Payten in your prayers. Thanks so much! I am off to figure out what to do for Payten's birthday; it is coming up in a couple of weeks! Yay and Wow all in one! She is turning TWO!!!! If any of you have ideas on what we can do for her Birthday, that would be fun for a child with physical impairments, let me know, email me or leave a comment, it would be so appreciated. I am having a hard time finding ideas and I want to make this day special for her! I hope everyone has a fabulous weekend! Oh and I changed her blog around for FALL, in hopes that
fall-ish weather would visit us here in Arizona soon! Happy Haunting everyone!!!!!
Tuesday, September 21, 2010
Mindy Gledhill- All About Your Heart ( Nie version)
I am happy to annouce that Payten is doing much, much better! Everyday she seems to do more! But I am sad to say that this past weekend was a very emotional weekend. I don't know why, it just was! I seriously thought I was over the mourning/sadness part, regarding Payten and her disablities. This weekend, I realized that it will always be there. It is NEVER going to go away, but I do not have to dwell on the sadness. I can let the emotions out, as they come, for the moment there in, but I can not let it over power me and this weekend I allowed them to over power me.
I have learned that I have to choose to, either be sad or to look at the beauty. I want to choose the beauty! Sometimes though, I don't know how to do that. I guess I am still learning, maybe someday I will get it all figured out, but for now I will keep trying. I just want so badly for Payten to beable to express her personality to everyone she see's and she can't and that makes me sad to think about. I can see it in her, it shines through her eyes, she is everything beautiful, she has an amazing spirit and I do not think people always see it, but rather they see her disablity. I wish I could change that and I can't!
I believe the Lord works through other people because My Sister In Law sent me an email over the weekend that really opened my eyes. It was a mothers description/definition about what it is like to raise a child with special needs. She compared it to preparing for a fabulous trip to Italy, learning all you can about your destination, ect. Then when you reach your destination, it is not Italy you have been taken to, but rather Holland. Right then you have to change your plans, you have to learn a new language and get different instruction books, etc. At first you may be sad, but eventually you start to see the beauty that Holland has to offer. You soon realize that you have two choices, you can choose to live your life mourning the fact that you didn't get to go to Italy or choose to live your life enjoying what Holland has to offer. What a beautiful way of describing it, it truly is like that and I was blessed to have been able to read it.
This truly was inspiration on my Sister's part, it helped me realize that this weekend I made the wrong choice. I was not enjoying what Payten had to offer, but rather was mourning what she could not offer. Thank you Brianna for bringing me back to what is important and that is Payten and her beauty! Today, another friend helped me realize the beauty of my child, she posted a video of her daughter to the song entitled All About Your Heart. I have posted it above for all of you to enjoy. It is a deeply moving song that brought tears to my eyes thinking about how it pertained to Payten. This too brought me back to the important things, this too reminded me of what it is all about, this too helped me to see that no matter what, Payten is beautiful and if others don't see it, then they don't see it and that it is their loss not mine or hers.
I love the line in the song that says, "You are a Butterfly held captive, small and safe in your cocoon. Go on, take your time, time is said to heal all wounds".... This is Payten! Payten is truly a butterfly, who can not necessarily show all of her beauty, due to the fact that she is held captive by her disablities, but through and in her own time, she will break out from that small cacoon and be that amazing butterfly she is inside! I also love the line where it says, "In my imagination, you are a VanGo Painting".... because Payten is a VanGo painting, Perfect and Flawless in everyway!
I am so thankful for my Father in Heaven for showing me the beautiful blessings my life has! I am going to try, not always do, because I know I will fail at times; but I am going to try to look for the beauty Payten's life has to offer! I am the Lucky one to know her heart and if you are so fortunate enough to get to know her heart too, then you will understand what I mean and know how blessed you are! I am glad that she is doing better day by day and I hope we can keep going on this path of wellness!!!!! Also below I have posted a video of Payten during OT playing with blocks! Warning: It is full of CUTENESS! Enjoy!
Friday, September 10, 2010
Long Time, No Blog! Finally an update on Payten!!!
Wow! I can not believe it has been over a month since I have blogged on here! I guess when you have a CRAZY/SUPER BUSY Life, time flies without even realizing it. Sorry that I have not updated for awhile, I have wanted to, but with Payten being in and out of the hospital, kids starting a new school year and my computer being out of commission, etc. I just have not been able to. But thankfully things are seeming to calm down and my computer is back up and running, Yay! Anyways, back to the topic at hand, Payten! What to say about Payten....Allot has happened since the last time I blogged!
Last time I blogged Payten had just gotten out of the hospital after having her Phenylalanine test done. Which by the way came back normal, which means that the diagnosis GTP Cyclohydrolase Deficiency is confirmed, there is nothing else to add to it! The plan after the test was done, was to bring Payten back to the hospital for medication trials, which indeed did happen. Payten was brought back on August 16, 2010 and was discharged on August 18, 2010. We were on the understanding that we would be there for 5 days, but because Payten responded super well to the medication, we were able to go home sooner than later! That is always a good thing!
Payten was placed on Levodopa, Carbidopa and 5 HTP to help with her Neuro-Transmitter Disease (GTP Cyclohydrolase Deficiency). The reason she had to be hospitalized was to watch her vital signs and make sure it did not send her into Cardiac Arrest, etc. Luckily she did not have any problems with the medication! But that did not mean that there was no Drama! While there, Payten had issues with her vent, issues that were not new, but issues the hospital did not like and so they wanted to up size her trach and everyone was on the same page except for one of her Doctors and so we ended up leaving the trach alone and trying something else, which has seemed to help! I am happy that we found a solution, we could have done without all the drama, but all in all we came to a solution and that is all that matters.
Also while in the hospital, we had them do an ABR test (Auditory Brain Stem Response Test.) Just to give us an idea about Payten's hearing and if it is registering, etc. It came back that the Nerves and everything in the Ears are functioning and working correctly, but that there is a dramatic slowing when it gets to the brain. The Neurologist said that it is due to her Brain stem not developing/growing and he is hoping that the new medication she is on will help with this and in 6 months we will do the test again to see if there is any improvement. If there is then we know the medication has help, if there is not, then we will open that can of worms, but until then we will hope for the best. I am going to speak with her ENT Doctor and hopefully one of his Audiologist to find out what this means on the standpoint of therapies, etc. and how it affects the hearing, does she hear the sound, but it is not being processed, what???? Lot's of questions that need to be answered, so when I get those answers, I will let you all know!
When we got home from the hospital, we found out that Payten had a Sinus Infection that showed up on a CAT Scan that had been done in the hospital. So our Doctor put Payten on a 20 day run of Augmentum in hopes that it would clear. She seemed to be doing well, until a couple of weeks ago. She started having Mucus Plugs Galore. I was having to change her trach 2 to 3 times a day, not typical or normal, so that was red flag number one! Then her secretions became out of control, we were suctioning her every five minutes and still having plugs! Again something that is not typical or normal, red flag number 2. Then she became very lethargic, pale, her seizures increased and she was extremely irritable, she was tired, but was not sleeping well, and just plain miserable, red flag number 3. We went back and forth that whole weekend trying to decide if we should take her into the hospital or not. We decided to wait and see the PCP Doctor on Tuesday due to it being Labor Day Weekend. When we saw our PCP it was determined that she still had a Sinus Infection and needed to go on another 15 days of medication, Omniceft.
About an hour after we got home from seeing the Doctor, Payten went into a non-controllable shaking episode. Her whole body was moving uncontrollably and she was very agitated and combative. This went on for 3 hours, I was going to call 911 and to be quite frank, I should have called 911, but I tend to try to solve things on my own. So instead I put a call into the Neurologist who called me back a few hours later and said to go down on the Dosage of Medication. Which we did and it seemed to help a little, but not enough. Two days later he called me again to see how Payten was doing, which she was not well. She was crying non-stop, still having tremor like motions, and her secretions were still out of control. He informed me that he believes this was all due to Payten being over dosed on her new medication. He said that he had a feeling to go down and check her medication dosage in the Pharmacy. He found that the Pharmacy had made a HUGE mistake in the Concentration of the Medication and therefore was overdosing Payten by quite a bit and so she was having big side affects of the overdose. He said that the crying was probably from Hallucinations and that indeed the uncontrolled movements were Tremors. He said the secretions could have been due to the overdosage as well, but he was not positive, so to keep giving her the Omniceft. In other words, all of this could have been avoided if someone would have paid attention to what they were doing and did their job right. But instead a little girl had to suffer due to someone else's mistake. It truly makes me sick inside to think about it and what could have happened if we did not catch it in time. Thankfully my doctor listened to his intuition and checked her dosage at the Pharmacy.
Since stopping the Medication things have gotten allot better. Her demeanor has changed dramatically. She is happy again, she is sleeping again, and she is not combative any more! The tremor movements are still there, not as bad as they were, but she is still having them. Everyday seems to get less and less, so I hope in a few days it will be no more. Her secretions are still out of control, which makes me think that is more Sinus related, then Medication related, but who knows and the plugs are no more! Yay, I am not having to change the trach everyday! So I do not know what was up with that, but happy that they are gone! All in All Payten is getting back to her normal self. She is not fully there, but over time she will get there. I still think she has a Sinus Infection that is not clearing and have questions as to why that is. But we see her Pulmonologist next week and then her ENT the following and we should get some answers from them, let's hope we can figure this out, so that she does not have to suffer with this Sinus Infection any longer! We also found that Payten is growing Pseudomonas in her Poop from a stool culture the PCP had us get and she is on medication for that as well. I hope everything clears and we can get back to normal soon! Again I apologize that it has been so long, but hopefully now that life is calming down and I am seeming to get a grip on things, I will have more time to just sit and blog! Wish me luck with that! Have a good day, I know Payten is and that is always a good day for me! Goodbye, God Bless and take care! :)
Last time I blogged Payten had just gotten out of the hospital after having her Phenylalanine test done. Which by the way came back normal, which means that the diagnosis GTP Cyclohydrolase Deficiency is confirmed, there is nothing else to add to it! The plan after the test was done, was to bring Payten back to the hospital for medication trials, which indeed did happen. Payten was brought back on August 16, 2010 and was discharged on August 18, 2010. We were on the understanding that we would be there for 5 days, but because Payten responded super well to the medication, we were able to go home sooner than later! That is always a good thing!
Payten was placed on Levodopa, Carbidopa and 5 HTP to help with her Neuro-Transmitter Disease (GTP Cyclohydrolase Deficiency). The reason she had to be hospitalized was to watch her vital signs and make sure it did not send her into Cardiac Arrest, etc. Luckily she did not have any problems with the medication! But that did not mean that there was no Drama! While there, Payten had issues with her vent, issues that were not new, but issues the hospital did not like and so they wanted to up size her trach and everyone was on the same page except for one of her Doctors and so we ended up leaving the trach alone and trying something else, which has seemed to help! I am happy that we found a solution, we could have done without all the drama, but all in all we came to a solution and that is all that matters.
Also while in the hospital, we had them do an ABR test (Auditory Brain Stem Response Test.) Just to give us an idea about Payten's hearing and if it is registering, etc. It came back that the Nerves and everything in the Ears are functioning and working correctly, but that there is a dramatic slowing when it gets to the brain. The Neurologist said that it is due to her Brain stem not developing/growing and he is hoping that the new medication she is on will help with this and in 6 months we will do the test again to see if there is any improvement. If there is then we know the medication has help, if there is not, then we will open that can of worms, but until then we will hope for the best. I am going to speak with her ENT Doctor and hopefully one of his Audiologist to find out what this means on the standpoint of therapies, etc. and how it affects the hearing, does she hear the sound, but it is not being processed, what???? Lot's of questions that need to be answered, so when I get those answers, I will let you all know!
When we got home from the hospital, we found out that Payten had a Sinus Infection that showed up on a CAT Scan that had been done in the hospital. So our Doctor put Payten on a 20 day run of Augmentum in hopes that it would clear. She seemed to be doing well, until a couple of weeks ago. She started having Mucus Plugs Galore. I was having to change her trach 2 to 3 times a day, not typical or normal, so that was red flag number one! Then her secretions became out of control, we were suctioning her every five minutes and still having plugs! Again something that is not typical or normal, red flag number 2. Then she became very lethargic, pale, her seizures increased and she was extremely irritable, she was tired, but was not sleeping well, and just plain miserable, red flag number 3. We went back and forth that whole weekend trying to decide if we should take her into the hospital or not. We decided to wait and see the PCP Doctor on Tuesday due to it being Labor Day Weekend. When we saw our PCP it was determined that she still had a Sinus Infection and needed to go on another 15 days of medication, Omniceft.
About an hour after we got home from seeing the Doctor, Payten went into a non-controllable shaking episode. Her whole body was moving uncontrollably and she was very agitated and combative. This went on for 3 hours, I was going to call 911 and to be quite frank, I should have called 911, but I tend to try to solve things on my own. So instead I put a call into the Neurologist who called me back a few hours later and said to go down on the Dosage of Medication. Which we did and it seemed to help a little, but not enough. Two days later he called me again to see how Payten was doing, which she was not well. She was crying non-stop, still having tremor like motions, and her secretions were still out of control. He informed me that he believes this was all due to Payten being over dosed on her new medication. He said that he had a feeling to go down and check her medication dosage in the Pharmacy. He found that the Pharmacy had made a HUGE mistake in the Concentration of the Medication and therefore was overdosing Payten by quite a bit and so she was having big side affects of the overdose. He said that the crying was probably from Hallucinations and that indeed the uncontrolled movements were Tremors. He said the secretions could have been due to the overdosage as well, but he was not positive, so to keep giving her the Omniceft. In other words, all of this could have been avoided if someone would have paid attention to what they were doing and did their job right. But instead a little girl had to suffer due to someone else's mistake. It truly makes me sick inside to think about it and what could have happened if we did not catch it in time. Thankfully my doctor listened to his intuition and checked her dosage at the Pharmacy.
Since stopping the Medication things have gotten allot better. Her demeanor has changed dramatically. She is happy again, she is sleeping again, and she is not combative any more! The tremor movements are still there, not as bad as they were, but she is still having them. Everyday seems to get less and less, so I hope in a few days it will be no more. Her secretions are still out of control, which makes me think that is more Sinus related, then Medication related, but who knows and the plugs are no more! Yay, I am not having to change the trach everyday! So I do not know what was up with that, but happy that they are gone! All in All Payten is getting back to her normal self. She is not fully there, but over time she will get there. I still think she has a Sinus Infection that is not clearing and have questions as to why that is. But we see her Pulmonologist next week and then her ENT the following and we should get some answers from them, let's hope we can figure this out, so that she does not have to suffer with this Sinus Infection any longer! We also found that Payten is growing Pseudomonas in her Poop from a stool culture the PCP had us get and she is on medication for that as well. I hope everything clears and we can get back to normal soon! Again I apologize that it has been so long, but hopefully now that life is calming down and I am seeming to get a grip on things, I will have more time to just sit and blog! Wish me luck with that! Have a good day, I know Payten is and that is always a good day for me! Goodbye, God Bless and take care! :)
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