Progress report on Payten and Pictures of our staycation!

Apologies to you all, for my last post had no update on Payten. Like I said before, not only will this blog be updates regarding Payten, it will be my feelings, heartache, laughter and family memories, but I do have an update so I want to apologize for forgetting to put it in my last post. For those of you who follow me on Facebook, you already know Payten was just recently in the hospital, but for those of you who did not know, Payten was hospitalized last Saturday. The reason being was uncontrolled seizures. Like in my last post, Payten had been having seizures daily, sometimes two or three times a day for two weeks prior to this hospitalization. Her doctor was well aware of the seizure activity and we kept going up on her Keppra (seizure medication), but obviously that was not working very well considering she kept having them. The reason we took her to the hospital, was not because of seizures, it was because she peed dark brown urine and it scared us. We thought it was her kidneys or liver, so we rushed her to the ER to be safe. When we got to the ER she quit peeing dark brown, typical right?! I know! But they still did blood work and a urine analysis to try and figure what might of caused her urine to be that color. Those tests came back normal, so we have no answers as to why she had that dark brown urine. While in the ER, Payten started having seizure, after seizure and so they wanted to keep for at least one night to monitor her and get her seizures under control. She was there til Monday. Not too bad, but still longer than they thought! She was on an IV drip of Keppra the first night and was still having seizures. The next day her seizure activity slowed some, but she still had a few, so they upped her Keppra even more and kept her another night to see how she did and to get an EEG done. She did great, her seizures were controlled and her EEG was normal, Yay! Considering we upped her Keppra to 9 mls., 1800 mg. ( In case you are wondering, that is a lot for a 14.6 kg 4 yr. old girl (well almost 4!)).

Since we have been home, Payten has been doing great! She is back to her baseline health and she is her happy little self again! We love it when she is happy and well, for we have so much fun with her. Today we saw her Pulmonologist, Dr. Panesar and Payten is sick. (Boo!) She will have to receive more breathing treatments throughout the daytime and she will be placed on Perdisolone and Bactrum to try and help clear the illness. Let's hope she gets over this without having to be put in the hospital. It seems like it is getting harder and harder to try and clear simple illnesses anymore for her. I feel like the only thing that works for Payten are IV antibiotics and we have to start those in the hospital, then we can come home sometimes on them if she is stable enough and finish them at home, but it is still a pain in the butt and we do not like to have to go to that extreme, but sometimes that is the only option we have for her. Please pray that, that will not be the case this time and that these meds will clear this illness.

Other than being sick, Payten is progressing well in her therapies. She is sitting independently. She is starting to be able to get up into the sitting position on her own, no she has not fully mastered it yet, but she will soon! She is enjoying playing with toys more and she is more aware of her surroundings and the people around her. She is doing well in her gait trainer, she is starting to take more steps, which is huge and she does not cry when we put her in it! Yay for that! Hopefully we can get her walking in it soon and then we can move on to a walker, who knows, one can hope! She enjoys music and Mommy singing to her. She loves people talking to her and reading her stories. We have found that she is starting to communicate with us by batting her ear. She bats two times for more, she bats one time for yes, and three times for no. It is amazing to see this. For so long I did think we would ever be able to communicate with her, but hopefully we will get to the point of her being able to use a communication device. It would be nice to understand what is going through that little head of hers! She is growing to be so tall. We are actually looking into getting her an actual wheel chair in the near future. I think it will be a good change, people will start to see Payten as the big girl she is, instead of as a baby.

As for her brain, we had a CT Scan done this last hospitalization and it showed that the area that had, had some bleeding on the brain, had cleared up, which is fabulous. But it did show worsening of the deterioration, so we will see, who knows? All I can say is she is progressing and so it doesn't matter what the Scan shows. I have put my trust in my Lord and I pray day and night that his will be done and that if and when it be her time or that it becomes to much for her to handle, he take her home. So when I ask all of you to pray for my sweet Payten, please do not pray to her to get better or to heal per say, rather pray that thy Father's will be done, for we do not want to prolong any suffering, we only want Payten here if it is what the Lord deems necessary for her. We have an eternal perspective and we know that this is not the end, rather it is just the beginning and so to us that is not a heartless pray, rather it is a selfless pray, for we only want what is best for our daughter. And we believe the Lord knows what is best for her, so therefore if we always pray for his will, rather than our own will, we will being doing what is best for Payten. I think this progress report on Payten really shows that all our prayers have been answered and she is progressing despite the odds and the pictures of the brain. I believe that is because of faith and trusting in the Lord. So thank you all for your devout prayers in Payten's behalf, they have not been in vain.

Now, onto something else! My goals I set yesterday in my last post, I failed miserably today at accomplishing the daily ones set. But it is kind of not my fault, the night nurse that comes on Monday did not show up until 10pm, when she is suppose to be here at 8:30pm. Reason being she did not know Payten was out of the hospital, so I didn't get into be until 11pm and therefore did not get up until 6:45am. Oh well, there is always tomorrow! We will see if I can do these goals, pray for me that I can, I am going to sincerely try my hardest to do them. Also below are pictures from the kids and mines day of fun/our staycation! Enjoy, we certainly did! Thanks again for caring enough about Payten to follow her progress and to keep her in your prayers. We do sincerely appreciate it.

This is the indoor picnic we had, while watching the three movies the kids selected! Mac Donald's was their lunch of choice. YUM! Not really, but they certainly think it is and I wasn't going to argue considering it was their day of fun!

Here is the hallway obstacle course the kids and I made! They had a blast going through it! The rules were, no using your hands, and no touching the "lasers" as we called them! But obviously as you can see, Makenna didn't follow the rules very well, for she used her hands to crawl through the maze! They had a blast and we had many laughs!

Sorry if I scared anyone!!! Hahaha! Here is the picture of me after the kids Painted my face like a clown! I know, I know, scary, but they had fun and that is all that matters! I had to leave it on until they gave me permission to take it off! It was way too long, but I obeyed! I think this will be a day my kids will always remember and that is why I added this to the goals I want to keep, random staycation days! This way when my kids are older they will have awesome memories of their childhood and maybe forget all the stress we have had to endure while caring for our beautiful Payter Tater!

This last picture was not taken on our staycation day, but it was taken the Friday after and I had to share it for I think it is so cute! Emmett has learned to climb and he climbs anything and everything! He keeps us on our toes, he gives Payten a run for her money! I seriously believe they compete with one another for Mom and Dad's attention! Oh well, good thing they are so cute or I don't know what I would do with them!!!!! Hope you enjoyed reading this and come back to follow Payten. I will definitely try to be better at updating this blog! Love you all!