Pictures with Brother Will

Knowing what she wants!

Morgan knows what she wants and knows how to get it. Last night she came and grabbed my hand. I was tired and I thought she was probably wanting to drag me outside again for a run. It was a little early for bed, so wasn't sure what she wanted. I got up and let her lead me to where she wanted to go. She led me to her room, went straight up to the light switch and turned off the light, then went to her bed, and got in it by herself! Billy and I were really impressed. It is neat to see her doing this to be more independent and to communicate to us what she wants. Today her teacher told us that Morgan did better sitting at school. One teacher held her in her lap and Morgan stayed sitting! They are all learning what works best. So very thankful for such patient and caring teachers and assistants. They are wonderful with her!

Wanting the best

As a parent, you always want the best for your child. And I think it's only natural to worry about them. I have my moments, and Billy does too, but thankfully it is usually at different times. That way, the other one can lift the one up that is down. I had my moment, or should I say moments, last week. Yes, she has improved in so many ways since the surgery, but she still has so far to go. It is so hard when I see kids her age and younger doing so much more. She has to be able to learn at school, but she won't sit still to participate. I am praying that we will be guided in what to do next. If there is another doctor, treatment, test, etc. that we need to do to try and help her. We have stopped with the testing, as we have a diagnosis and are fine with that. We are glad we don't have to drag her around to different specialists anymore. However, if there is another doctor or treatment that could help her, we would definitely take her. Our current doctors keep saying, "this is a marathon, not a sprint". This literally means that it takes time for her to heal. Lord, I really need patience. When it comes to your children, it is especially hard to wait on God's timing. I have seen His hand on her throughout, so I am very thankful, I just want the best for her.

Active at school, calmer at home

Our nurse was with her all day yesterday at school, then followed us out to the house to help at home. She really sees the difference in Morgan with just being in her comfort zone. She says Morgan is very active at school and still agitated some. But at home, she is happy and much more calm. I think she is still getting adjusted to being back in the routine of school. Also, there is so much going on there, with all the kids and activities. Her teacher did say she was sitting some better but still gets frustrated occasionally when she wants to get up and run around, but can't. I have noticed at home she has been more calm lately, so very thankful for that. Our new game this week is playing peek a boo with the towel after her bath. She loves it and will hand the towel to me to play. Also this week, she is now able to turn off the light in her room without us having to lift her up. She stands on her tip toes to reach it, which is a great exercise! Little things, but big things. We focus on the little improvements and are thankful for all of it.

Happy Girl

Some things we are trying

I have changed up some things I was doing with Morgan. First, I cut down on her B12 lotion. Since B 12 is for energy, she seemed to be having enough of that. I added in a fish oil supplement to get the good omega fatty acids for her brain. I know all the great benefits of the fish oils and had given it to her before,but I had pretty much stopped all her supplements since the surgery. Morgan tends to react differently to supplements and medications, often getting the opposite effect. At one time, she was on so many supplements that it was causing involuntary behaviors,and we never really saw any positives from them. So I am starting her out very slowly, on the ones I feel are most important. I have ordered some essential oils, that are all natural and are used for calming. You just rub them on the skin. Hopefully, this will be something we can try at least to keep her calm for school. I am trying to get alot of nutrition in her diet, rather than having to supplement. She is still on her special diet: gluten free, soy free, and dairy free, although I am not as strict on it as I used to be. Remember the issue of her appearing to be starving all the time? Well,I have started making her smoothies, and giving them to her throughout the day. They are packed with calories. She needs it,by the way, since she is so active and burns off so many calories. The smoothies are made of: almond milk, coconut oil, nut butters, fruit,and spinach. I also add a little raw sugar in there so she likes the taste. And she does love it! Anyway, it seems to help some with the constant hunger issue. And so far, the last few days, Morgan has seemed more calm. Prayers, please, for a calm day at school today.

"She is calmer this week"

Morgan's teacher stated that Morgan is calmer at school this week. Morgan has been sitting better, giving less resistance. She still has some moments of frustration, but seems to be a little less hyper the last couple of days. I think it will just take a little while for her to get back into the routine at school. She is doing much better at home, when she is in her own environment and has a routine. Thank you for the continued prayers. My mom said her specific prayer has been for Morgan to have a calm spirit. "Great shall be the peace of thy children". Yes, Morgan, great is your peace.

Praying for peace

So specific prayer has been for her to be peaceful. Joyful too, but still peaceful. She has not been near as agitated since last Saturday. She was still pretty hyper, but happier for the most part. Today, however, she has been noticeably calmer. So thankful. I have cut back some on her B12 lotion, so maybe that is helping. Whatever it is, I am thankful for the calm behavior today and praying that it lasts. I think a lot of the frustration she has been experiencing has been because she doesn't want to sit in school. She is more expressive of her emotions, more opinionated, which is good. However, she gets frustrated when she doesn't get her way and has to sit still. She has to learn, though, that you must sit in school in order to do your work. So thankful for her teachers that are so patient with her.

Extra help for us!

Lately we have definitely had our hands full. Today was rough because not only was Morgan hyper, but she was agitated and irritable. I really think the seizure meds are helping contribute to the hyperactivity. I was reading the side effects of it and it said that it can cause drowsiness, but in young children, it can have an opposite effect. Also, I just think her body is having a hard time adjusting to all the changes in her brain. But, last night, Billy's parents came to spend the night and kept the kids while Billy and I went to dinner. That was nice. Last weekend, my parents and my aunt helped us with her. Also, I just learned on Friday that our wonderful nurse, Lucinda wants to work weekends for us! Yay! This will help us so much. Right now, we just have our nursing available to help while we work. So how nice to have help while we are at home, so I can get things done and maybe even go shopping or something. So thankful for our nurse, and so thankful for the help from family and friends! We are really blessed!

That was just last October

I want to take this time to focus on how far Morgan has come since the surgery. It really helps me to stay focused on the positive, when I have been so tired lately due to her hyperactivity. I just want to reflect again on the miracle of healing that has taken place in Morgan. Yes, she is still far behind and has a lot of catching up to do, but she has come so far since last year. It was just last October when we saw a specialist in Houston who diagnosed her with a progressive brain disease. I remember that day, the worst, most devastating day of my life. She told us, without even seeing her MRI images, that was her diagnosis, no doubt (even though there was no knowing for sure until bloodwork was done). She told us that she would end up in a wheelchair someday. She said her diagnosis was so rare, there were only 50 cases in the world. Because it was so rare, she had never seen a child with it and never would again. I remember watching Morgan try and walk down the hall that day as they were evaluating her. She couldn't even take two steps without falling down. She was so uncoordinated and unbalanced. It breaks my heart to think about it. I remeber hearing the news from the doctor (whom we had waited a year to get to see) that there was no treatment and just to go home and love her. She said we could stop looking (and basically stop trying to find a treatment). With devastation, we drove the long way back home, mostly in silence, but in tears, feeling hopeless at the time. That was just last October. Thank The Lord we didn't stop looking, that we got another opinion. Thank The Lord the test was negative. And Praise The Lord for all He has done in her life so far. Yes, hard to believe that was just last October, cause look at her now!

Current issues that need prayer coverage

I find myself having less and less time for blogging, which saddens me because I enjoy it and it helps me to get out my feelings. However, things have gotten really hectic lately. It is taking a toll on our family. Morgan has become nonstop in everything she does. The climbing has gotten out of control. It is so tiring to constantly be getting her down off of furniture, etc. I think she really understands that it is wrong, especially when we constantly tell her no, but I believe she just really can't help herself. She is constantly seeking sensory input. We have tried everything to try and help her with that. However, nothing seems to really be helping. It has stressed Billy and I out very much and makes it extremely difficult for us to go and do anything as a family. So my specific prayer requests are for us to be guided in what can help her. I don't want to have to medicate but am considering different supplements to hopefully help. It may come to the point of medication if that's what it takes for her to calm down enough to focus and learn. Another issue is that she is constantly hungry even though she eats a lot and doesn't really gain weight. Thank you all for your prayers.