Still not ready for crowds

This past week has been a test for Morgan. She has certainly been challenged by having to stay indoors due to the cold weather. She loves being outside a lot! However, she has done pretty well. Yes, she has led us to the door several times, requesting to go out by touching the door. And yes, she does get frustrated, but we have been trying to redirect her and keep her busy with all her indoor activities. She has managed to not have too many melt downs. Even at Sunday school, in the nursery, they remarked on how well she was doing. So, we thought we would try and be like a normal, sociable family and attempt to eat with our church family for Thanksgiving. This was a mistake. I really think the large crowd and noise triggered her, and the melt down started. Away we went, back home, as Will was complaining about missing out on all the great deserts. Back at home, she was happy as could be. Although, I am so thankful she is more calm at home, it is hard not to be able to go to social gatherings. I have to focus on the positives to date, rather than how far we have to go. And be thankful that our friends, family, and church are understanding of what we go through. It's not that we don't want to socialize, it's just difficult right now.

"She had a good week"

When I asked Morgans teacher yesterday if she had a good day at school, she said that she had a good week. She has been calmer and not climbing as much! She also sits for periods of time and tolerates hand over hand activities such as coloring, crafts, etc. On Monday we go to have her stimulator increased, which I think has helped with her behavior. We have scheduled her 24 hour EEG for December 2nd so that is right around the corner. I will be glad to get that behind us and know where to go from here. Overall, things are looking up and I am not dreading traveling with her for the holidays. God is hearing our prayers!

More relaxed at home

Well, not only has Morgan been a little more laid back lately, we all have. Having our wonderful nurse here, six days a week is a true blessing!! Yesterday, when both kids got hurt and were screaming at the same time, it was a little chaotic. She said " I don't know how you did it before by yourself". This is coming from a lady who has raised 15 children. She is so organized and laid back, and such an awesome, Christian lady. I told her, " but you raised 15 children". She said " but this is different". So yes, I have been so much less stressed since having her. She fixes Morgans breakfast and lunch for the next day, feeds her, bathes her, and keeps her off the tables while I am able to help Will with his homework, get things done, and just hang out with the kids until Billy gets home. It is so nice, after working all day, to come home and have help until my husband gets home from work. I am so very thankful. So my advice to anyone with special needs children, is to see if you qualify to get nursing care. Morgan goes to have her vagus stimulator increased again next week. Then, we are most likely going to go to the Epilepsy Monitoring Unit in the hospital overnight in December for her EEG. They couldn't get us an ambulatory device until January. Not a big deal. We can handle one night in the hospital. This time, will be so much different. We don't have active seizures to deal with and they don't have to make her have them in order to video them. (Last time we were there, back when we were trying to figure out the cause of the seizures, they took her off all her meds and made her have seizures all night long to video monitor them). Praise God those days are over. We are just there to make sure she's not having any internal activity. Then, hopefully, we can get her off all her seizure meds! Thank you for your prayers that this will happen!

This is Morgan's school picture this year. Such a blessing that she sat still long enough to get it and even gave a little grin! First school picture that has turned out good! So thankful!

"She Looks So Amazing!"

Morgan had her appointment with Dr. Clark yesterday. Dr. Clark said "she looks so amazing." You see her everyday, but to me, she looks amazing. She is so amazing because no one else in the country would do surgery on her because she had seizures coming from both sides of the brain, but I didn't know what else to do". Wow! Is our little girl a testimony of Gods miracle of healing?! Dr. Clark had told us several times before that she wasn't a candidate for surgery because of the multiple sources of seizures. However, they had run out of options and had to do something, so they were willing to try and get as much of the source as they could, not really knowing if it would work. He also commented on how happy, alert, and interactive she is now. Not only did the surgery help with the seizures, but helped her overall! We discussed going completely off the seizure meds, but he does want to do a 24 hour EEG to make sure there is no seizure activity internally that we can't see going on. We can go in for placement of the EEG then go home for 24 hours, then return for the EEG to be taken off. This way, we don't have to stay over night in the hospital. We should be doing this in a few weeks, when the hospital calls and is able to schedule. He did increase her stimulator. It has to be increased slowly, so he increased it just a little and we will go back in two weeks to increase a little more. He wants to increase it to help as we reduce her seizure meds. Also, the stimulator can somehow help with behavior issues. Amazingly, her teachers already were saying that Morgan was calmer today! Way to go Miracle Morgan!!

Improvements Noticed!

Morgan's behavior continues to improve! She has been less agitated ( although still opinionated and expressing emotions). She has also been a little more calm! Traveling has been a little easier. She still has her moments, but overall, we have been noticing some improved behavior, making it easier on all of us! She has come such a long way since her surgery. The surgery not only helped tremendously with the seizures, but helped her in so many more ways. She really is a different child since the surgery. I am so thankful! Tomorrow is her doctor appointment with her epileptologist, Dr. Clark. I have all my questions ready! Thanks for being in prayer for this appointment. I want to ask about the safetiness of going off the meds and if an EEG is needed. Our nurse is going with us, so she will be able to help me with Morgan while I visit with Dr. Clark. I think he will be happy to see how well Morgan is doing!

Rocking!

Improved behavior

The last week has been a little less crazy! Morgan has been calmer for the most part. She has been going to bed easier. She has also been climbing a little less. She is understanding "No!" and actually responding to it. Her new thing this week has been sitting in my lap and rocking with me! This is a big deal and something we have prayed for. Don't ever take that for granted. It is so special just to be able to hold your child and rock them for a few minutes. She has always been too hyperactive to sit still long enough to be held. Also, with all her sensory issues, she hasn't liked being touched. So blessed to have a sister who is a pediatric OT and knows about sensory integration. She has given me some techniques to try. Yes, Morgans therapists have taught me a lot of it, I just have to be reminded. Remember, we have been in " survival mode" lately. Anyone who has a special needs child would understand. That means it is all we could do just to get through the day with the basic needs of life. We were too exhausted to do anything else. Now, with a little breathing room, help from our nurse, and Morgan being calmer, I can think about doing more. So I have started back with the brushing technique for calming and prone on her ball, etc. She is also no longer withdrawing from the reduction in her meds, and is on a lower dose, so I think that is helping as well. Thanks for the prayers, we definitely are receiving them!

Enjoying the help!

This week, Morgan's nurse started helping me in the evenings from 3:30 to 7:30! Morgan qualifies for 38 hours a week of nursing care. We had been using most of the hours with the nurse going to school with her. But, now we have worked it out where she can help me out at home. Morgan is ok at school, there is a good ratio of teachers to students. So anyway, having the help at home, has been a tremendous help. When we get home from work, she is there to help me in anyway I need. She will help me cook and prepare all Morgans meals for school the next day, while I spend some time outdoors with the kids. Then, she will chase Morgan around while I help Will one on one with his homework, without having to multitask. It has been such a load off me. However, this is just the first week, and it takes some getting used to. I have still managed to be stressed and tired. I guess just with organizing it all and getting in the routine. Then, on Thursday, my nurse had to go out of town and I realized how much I missed having her and had gotten used to her help. It was crazy doing it all by myself again. However, Morgan, thankfully has been less hyper this week. Praise God! She still climbs on everything, but she seems to be not so nonstop 100 miles an hour, and she has not been as agitated. Today she just walked around calmly outside for over an hour, not running and screaming, but happy to just walk around calmly and enjoy the day. Thank you all for your continued prayers. God continues to watch over us and provide for us the help we need.