What we are dealing with now

Behavioral issues still. Morgan had a rough time over the holidays. Not sure if it was because of not being at home, in her comfort zone, being overstimulated with all that was going on, or being out of her routine. She was very agitated at times. Thankfully, we were able to spend a lot of time outdoors, which makes her happy. I think some of the behaviors are from her not being able to handle her emotions and throwing temper tamptrums from not getting her way. So in a way, she is developing by expressing herself. However, it makes life difficult for our family. So thankful for mine and Billy's understanding families. Rather than going to my inlaws for Christmas as planned, they came to our house. That way, we didn't have to travel with Morgan and she was able to be at home, where she definitely is more happy. Also, we have been adjusting some meds with Morgan. Ones meant to calm her actually seem to have the opposite effect on her. Also, she has a very hard time weining off of medications. There is a withdrawal phase with her which is almost worse than the side effects of the medicine. Also, if she is on too many supplements, she has an adverse effect. She seems to do better with just getting good nutrition in her diet. The smoothies I give her daily she loves and seem to be keeping her well so far this year, when the flu has been all around us. Next on our things to do is to get a blood test to check and see what specifically she is deficient in and supplement only in what she needs. This, along with a gluten free diet, has helped my mom with her migraines. We are always hopeful and always looking for ways to help Morgan. Thank you all for your continued prayers. We really feel Gods strength during this time.

Merry Christmas!

No seizures seen on EEG!

The nurse told me over the phone yesterday, no seizures were seen on the EEG! No formal report from Dr. Clark yet, he is still overseas at a conference. However, the nurse did say spikes were seen on the EEG that could cause risk for seizures. We are believing those spike will not only not cause any seizures, but will go away. Thank you Lord for healing her forever from these seizures. The nurse said that there were no concerns right now or he would have called us sooner. He just wants to follow up with us next month. Thank you all for your prayers and continued prayers for complete healing and restoration. We realize she still has a long way to go, but we are thankful for how far she has come in the last year since her surgery.

Having fun outside, even though it was still cold!

Making it through the cold days, the holidays, and being in the hospital

Morgan is an outside girl! I think she would stay outside 24 hours a day if she could. So, this cold weather has been challenging as she has to stay indoors. However, we have managed to keep her fairly occupied with all her fun activities indoors: her platform swing, her slide, the ball, her ramp, and the Bosu. Yes, Morgan has had a few melt downs here and there, from not getting her way,but that is usually handled with a quick time out to her bed/tent. We also survived the holidays, as Morgan does not usually do well traveling. However, the short distances at a time that we traveled, were not too bad. She had a few moments,but tolerated fairly well, considering. Morgan also survived her hospital stay. It was not fun, but we all did survive. She has gotten several EEGs before, however, she usually did not know what was going on and didn't seem to care. But not ts time! She screamed and kicked and cried her poor little eyes out for the solid hour and a half it took them to glue the leads on her. Then, she was able to walk around with a little back pack and a long cord. We were able to keep her fairly happy most of the time. She had a rocking chair and a play mat in her room. They brought her toys to play with. We also got to take her across the hall to a really cool sensory room. It had huge tumble forms, fiber optics, and a vibrating mat. This is all new since the last time we were there. Between, my mom, my aunt, my mother-in-law, and me, were able to keep her entertained. Morgan and I did not sleep well that night and were tired the next day. However, I will take that anytime over the nights we have had there before. So thankful, we did not have to be awake to watch for seizures and push that button. So thankful, for where she is today. Still don't know anything about the results from the EEG. I called Dr. Clark but he is at a conference until the middle of this week. So we will talk later this week. Will keep you posted. Thanks for the prayers.

Happy Birthday Morgan!! You're 6 today!

No news is good news

The nurse told us this morning that the doctor would not be able to look at the EEG until later today. There was no telling what time that would be, so we opted to go ahead and get our little girl out of that hospital and go home. They said they would call us if there was anything significant to discuss, otherwise, just consider it all good, and follow up with Dr. Clark in 6-8 weeks. However, I will be calling Dr. Clark's office in a few days to have him go over everything, which I know will be good! Thank you all for your prayers!

Happy now, but gave them a fight earlier when putting on the leads. Please pray for no seizures in the night. Doc will go over results in the morning

EEG tomorrow

Thank you all for your prayers as we head to Austin tomorrow for her 24 hour EEG. We pray that she will be calm during the placement of the patches( which requires gluing to her head). Also that we will be able to keep her happy during the full day and night we are in the hospital. We pray they will be able to effectively see what they need to see(which will be no seizure activity!). Thankfully, she will be able to move around with the little backpack of wires and can go across the hall to the playroom. I will keep you all posted, but I have faith everything is going to go well.

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.

Where she was: with those awful seizures

I want to take this post just to reflect on how bad her seizures were, for those who don't know, only to show the miracle of healing that has taken place. Because, it is painful to revisit those times, I do it only to focus on her miracle and give others encouragement. So here goes: just last January, we called EMS out to our house, as she was having seizures over a minute long, that were occurring 3-4 an hour. The doctors called her seizures, partial complex seizures( the ones where her body shakes and her extremities stiffen, and her eyes go out to the side). Often, theses seizures could be stopped with her emergency Diastat, which is Valium. However, it was not stopping them that January day. We did not go to the hospital that day because the seizures subsided after being given oxygen. However, they did not stop, just slowed down. There would be another day later that month where we had to ride in the ambulance to Dells and stayed overnight. One day, she started choking on her food because she had a seizure while eating. Then another time in February, we rode again in the ambulance to Dells and spent a couple of days. I remember that day in the ER, when her seizures were clustering every five minutes. I felt so helpless. No one around seemed as concerned as me. They had given her medicine and her vitals were ok, so they didn't seem worried. However, as a mother, it drives you crazy to feel so helpless and watch your child suffer like that. These were some of the worse times, where all that kept us going was the grace of God and the hope of the upcoming surgery. Of course, this was going on three years of having seizures. But thankfully, her seizures weren't always that bad. They changed over the course of three years. She had stare ones, and grand mal ones. They started out being mostly during the day, to being mostly at night. She saw many a doctor and had many a test run. After spending four days in the hospital one time for video monitoring of her seizures, the only change was to put her on more medication. We tried lots of things, therapy, diet, supplements, to B12 injections, to multiple seizure meds. Although previously against brain surgery, we knew when it was time for our little girl. We were out of options. And now, no witnessed seizures in 6 months! Praise God!

Helping to raise Awareness

Last Monday, I went to Austin to participate in a documentary called Undiagnosed. This film is to help raise awareness in the medical community of what families go through not having a diagnosis. Thankfully, we have one now, but it was a long, painful process. We had some misdiagnoses along the way that led to an emotional roller coaster. The idea for the film came from the producers own experience with being undiagnosed with her own illness. It will probably be a year or so until it comes out, so will keep you posted. I wouldn't want any other families to go through what we had to. Hopefully this film will help medical professionals when dealing with these families. They are working on a resource for professionals to access that is a database of rare diagnoses with listed symptoms to better assist with diagnosing. One of Morgans physical therapists, who is also a medical liaison for families with children of rare illnesses, referred us to the producer. The website is still under construction but should have a trailer coming out soon. It is www.undiagnosedfilm.com. So excited and thankful that someone has taken notice and is making a film to raise the awareness of what some families have had to go through in the undiagnosed journey.

On the go!

Good weekend

Morgan has been better the last few days. We went to my parents. First trip with Morgan in awhile. Since its only an hour drive, we thought we would try it. She was pretty happy most of the weekend. We stayed busy, being outdoors most of the time, and she did good. She also went right to sleep on Saturday night, even not being in her own bed. So thankful we could actually enjoy time traveling from home without high anxiety. She also had a good day at school, her teacher said. Hopefully, we are past the withdrawals and the behavior will continue to stay good. Now, if only the hyperactivity would stop! Still climbing on tables every second, so please pray for that to stop. Overall, the last three days have actually been enjoyable. So thankful! We see Dr. Clark in about 3 weeks to discuss further about the medications. I would love to be able to go off completely, but have to be sure it is safe. Might have to do another EEG. Anyway, she has the vagus stimulator which also helps. She is on a very low dose and that could be increased if needed. Will keep you posted when it gets closer to our appointment.

Challenges and blessings

The last two weeks have been challenging. The greatest challenge, however, is following a blessing. The blessing being: that we are able to reduce the seizure meds! Six months of no seizures and Dr. Clark says to go ahead! The challenge: withdrawal from the decrease in doseage. We have been here before, several times. We have had her on so many seizure meds before, and weaned off ones and added in new ones. The changes in these oh so powerful drugs has its effect on Morgan. She has moments where it's like a switch turns on the agitation all of a sudden. It's mostly at night since its the night time dose we are decreasing right now. After praying for wisdom, and after the discussion with our nurse, we determined she must have a headache and if not that, something was hurting. So we have been giving her some Tylenol at bedtime,and within about 40 minutes, she calms down and sleeps through the night. Again, so thankful for the sleep at night.

Swinging on the platform swing in her room

Patience tested

I continue to try and focus on the positive. This week has been hard because Morgan has really tried my patience. I have never really thought of myself as a patient person, but God is making me into one. However, my patience ran very thin this week. I prayed for God to help me with my schedule so that I was more efficient and had time for everything and everyone. In the afternoons, starting at 3:30, I am by myself with the kids until Billy gets home, which is often after 6. Balancing Will's homework, with making Morgans breakfast and lunch for school the next day, while Morgan climbs on the tables, got the best of me this week. Some of the solutions The Lord led me to: take Morgan outside to run and jump right when we first get home, for her to get attention and get that input she needs first. Then, sit down with Will for homework while Morgan is in the stroller, right there with me where I can watch her. Then, wait until Billy gets home to fix all Morgans meals for the next day ( she is on a special diet and I send all her meals to school). I am working on getting this all together and being at peace without having to get it all done first thing when I get home. The supervisor nurse was here yesterday and I told her that Morgan had been more agitated lately, along with her ever so crazy hyperactivity. She thought Morgan was either having sinus pressure or a headache from allergies, the weather, etc. So I gave her some Tylenol and it really seemed to help. She has not been agitated today, and seems a little calmer, but still climbing everywhere. The doc called in some oxytocin supplement to try for calming, so we started that this week. Also, have a call in to Dr.Clark to see about further reducing the seizure meds, as we feel this is contributing some to the hyperactivity. Thanks for the prayers. We will need them as we spend the next three days at home, most likely cooped up in the house with the rain. But oh so thankful for the hope of rain.

Meeting Goals

Today, we had Morgans ARD meeting at the school. It was so positive! Everyone focused on her improvement in the last year. We went over her previous goals and discussed new ones. The PT said " Morgan has mastered all her previous goals for PT!" This is so amazing. Especially because this is the same PT that said last year at the ARD, that she couldn't get Morgan to participate at all with her and she wanted to reduce her therapy sessions. It is so amazing, I will say it again. I am just remembering the ARD meeting last year, which was right after we had come back from the Houston doctor that gave us the devastating diagnosis. I was just so sad then and don't know really know how I got through that time, only by the Grace of God. But today, such a different meeting, for such a different Morgan! Her teacher, ST, PT, OT, developmental specialist, and principal were there. They all had new goals for her, and new ideas. The PT will now be working on more advanced trunk stability and balance activities on the bolster swing and eccentric quad strengthening with descending stairs. The OT will be working on more independence with feeding, and Speech therapy will be working on communication. The ST wants me to take pictures of Morgans things around the house, and things she likes to do and email them to her. They will be working on association with objects and pictures, and the PEC communication she has worked on before. They all spoke about her improved receptive communication, her understanding, and her improved awareness of her surroundings. Also, she is so interactive now and expressive of what she wants. It was such a positive meeting, and geered toward helping her progress. Again, so very thankful for Morgans wonderful team of teachers and therapists,and so thankful how far Morgan has come I the last year!

Happy

Morgan has been happy today. She has been at home with our nurse and in her comfort zone. She has been doing lots of babbling, and different noises, so that is encouraging. She has been smiling and trying to get me to chases her. So glad she has been happy and not agitated. And also not real hyper! Also, her balance and coordination just amazes me. Now, she loves to walk up a big pile of dirt/sand that we have in our pasture. She takes my hand and leads me over there. I used to have to help her up it. It is a steep incline and very uneven terrain. Yesterday, she walked up and down it three times by herself. Also, the other day, I walked in her room and found her standing by herself on her platform swing. Kind of scary, but she was holding on. Still of course, so thankful for no seizures!!! I will be posting soon about where she used to be on that, to show even more so the miracle God has done.

Adjusting

The last two days at school have been a little better for Morgan. Her wonderful teacher, Mrs. Brooks, has come up with some ways to get her to sit. She made her a little activity belt she puts around her waist that has some sensory toys on it. Morgan will sit still with this for a time. She just always has to be "fiddling" with something. Anyway, it is helping. Her teacher is so wonderful in coming up with new ideas to help Morgan adjust. So this week, she is still climbing on everything at home and still has a temper and gets mad when she doesn't get her way. But, at least she is sleeping well at night. I am thankful for that. I remember all the sleepless nights. It means so much to be getting a good nights sleep now. Also, I am so thankful Morgan is signing some now! She signs "more" when she wants to jump more on the trampoline. It is so cute. She will get up and come over to me and sign it as she looks right at me. She knows what she wants, and now she is starting to communicate it. I know the temper and frustration must be from not being able to talk and tell us what she wants. So thankful, that the communication is improving in some areas.

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.

Back to school

Morgan's first day back at school was a little rough. She had a tough time sitting still and getting back in the routine. She is used to having her morning run and jump everyday, and she didn't get to do that. They do take them outside, but not until later, and the first day, it rained. However, they are finding what works for her to get her to sit and attend to activities. They use her compression vest which seems to help. Our little girl has come a long way in the five months since her surgery, but still has a long way to go. I am very thankful that she is doing so much more, even if it is being into everything. At least she is not sitting in a corner stimming on a zipper all the time like she used to. Yes, she requires a lot more energy and work, to keep her safe from climbing on everything, but she is stronger now and is exploring. I went to check on her in her room yesterday and she was sitting on her swing, swinging by herself! That made my day.

First Day of School

Not ready for traveling yet

This weekend, my family went on our annual vacation to Horseshoe Bay. The first few hours went good. My parents kept the kids Friday evening while Billy and I went to a concert with my sister and her husband. Billy and I were talking about how calm Morgan was and that it was nice to be able to go out and do things and to go places. Then, we got back to the hotel, and everything changed. Morgan would not go to sleep. She was wide awake at midnight and Billy had to take her home. Thankfully, we were only 30 minutes from home. She went right to sleep when she was in her own bed. All this really saddened Billy and I. Once again, our family was split up. Billy and Morgan came back for the day on Saturday and then went back home again that night. Through it all, I have to look at the fact that she was out of her routine, out of her comfortable environment, and over stimulated with new activities, people, sights, and sounds. She actually tolerated the day on Saturday fairly well, considering, until that night. I had pushed her past her limit by Saturday night and the meltdown happened. Now we are back home, and she is happy. She still climbs on everything and is constantly into everything she is not supposed to be. It is nonstop. How can a person go and go that much all day without ever slowing down? School starts this week and my prayer request is that she will be able to sit and attend to tasks to be able to learn.

Closing one door, opening another

So Morgans last day of outpatient therapy was Monday. We were sad, as we will miss them. They have helped Morgan so much. They were there with her to help her recover after her surgery and to regain strength and function that was lost at first. I will definitely keep in touch with them. They said they would always be there for us for any questions and possibly a reevaluation in a few months if necessary. We look forward to her returning to school next week where she will continue her therapy there. It will be good for her to get back in the routine. Also, next week, our wonderful nurse will be going to school herself to become an RN. She will still work part time with Morgan. Hopefully, our nursing agency will find us another nurse for the rest of the time. We are praying for that perfect nurse, just as He has provided for us before.

Morgan and her fabulous team of therapists!

The story behind Morgan's tricycle

Yesterday, Morgan received her very own brand new adaptive tricycle, custom fitted to her. Therapeutic adaptive tricycles are for those unable to ride a standard bike or tricycle and allows them more independence, while helping to increase their strength, mobility, and balance. The heights, length,, foot pedals, and handle bars can be adjusted. The foot pedals have straps to hold her feet on. There are also straps to fasten around her trunk. It came with a helmet and a personalized license plate! So Morgan is a very blessed little girl. Her Terapists helped her to get it by first evaluating her need for it, taking measurments, and filling out an application. She qualified for the trike and was put on a waiting list. A wonderful organization called Ambucs raises money for the trikes. We are so thankful. She now has one of her own that she can ride everyday. It is so therapeutic. Her school also has one that she can ride when she is there. So Morgan has a lot of equipment now and a wonderful team of therapists to help her. Sadly, tomorrow will be our last day at Cedar Park outpatient because Morgan will be getting therapy when school starts.

Morgan's New Tricycle!!!

Big smiles from her doctors!

Morgan had a great appointment yesterday. Dr. Clark was all smiles when we told him all that Morgan is doing now. He proudly told his nurse and Dr. Lee when they walked in. "She plays chase and hide and seek with her brother now." And he was even more excited when we told him "No seizures!" He said we could go ahead and reduce her completely off one of her medications, so she will just be on one! He said just continue with that one until we see him back in three months. Dr. Lee, her neurosurgeon said "she looks great!" He released her from his care! I did ask them both questions about her behavior changes and new emotions. They said this was a good thing. She is expressing herself. However, hyperactivity could be from the medication. Dr. Clark said if need be, we could increase her nerve stimulator as it can help with behavior issues. So maybe if at next visit she is still hyper, we can increase it. I asked Dr. Lee why she holds her head all the time. He said it was most likely that she was feeling the nerves growing back. So both doctors were very pleased, and so are we! Praise God for all He has done, for guiding us to this amazing team of doctors and for healing her!

Follow up appointment tomorrow

Tomorrow is Epilepsy Clinic with Dr. Lee and Dr. Clark. Looking forward to giving them a big thank you for helping our precious girl. I have my questions ready too. Hopefully we can continue to reduce the seizure meds because she is doing so well! Want to ask Dr. Lee why she still holds the right side of her head, what is she feeling? She also has more sensory issues. She is just nonstop active. Every week is different with her behavior, emotions, etc. is this just part of the healing process? She has always had some sensory issues, but it seems so much more so now. She just is nonstop seeking sensory input. We are trying everything they have suggested in therapy, the pressure vest, weights, deep pressure, etc. It is helping some but it is wearing me out. Again, I am thankful for her progress so far, just want to know how we can better help her get through this phase.

Accepting and Adjusting

So I have been doing better at accepting the fact that I don't get much accomplished around the house right now, and that's ok. What's most important right now is time with Morgan and Will and keeping Morgan safe. After praying this morning that God would give me a good attitude about being home today and have the right "method" behind the daily chores, I discovered something that really works( at least it did for today and praying that it will continue). I had said in my last post that Morgan is all over the place, climbing on EvERYTHING. We are constantly on our feet, getting her down and off of all the furniture. Makes it extremely difficult to turn away even to do the dishes or throw in a load of laundry. I discovered something she really likes to do, bounce on her therapy ball. I sit on there with her and hold her, and we bounce...and bounce...and bounce. We bounced about 45 minutes this morning. It is something I can do with her, not too strenuous, but does give me some exercise, and I get to hold her. After doing this, she was more calm, entertained herself, and didn't climb for about an hour or so while I could get some things done. How awesome that I could do something with her that we both enjoyed and it gave her that calming input that she needed so she wouldn't climb and stayed out of trouble for awhile. Also learned this week, that if we have to go to the doctor, putting her in her stroller while waiting in the lobby, really helps. We had to come up with something different because she would flip out, become a different child, scream, and throw herself on the floor when we were waiting at therapy or at the doctor. So the other day when I had to take Will to the doctor and she had to go with us, I put her in her stroller and she was so calm, even though we had to wait about 30 minutes! Another huge accomplishment this week: I took both kids with me to the store in Austin and I survived without pulling my hair out! I don't think I have even attempted taking both kids with me to the store more than about two times ever. I have just now started taking Morgan with me to the store. She has her limits, but does pretty well. I just put her in the basket and she is happy if we stay moving, and I have snacks. The other day, Will helped me give Morgan snacks and keep her entertained. So proud of my precious children and that I was able to do something normal like going to the store with them!

Progressing in therapy

On Monday, the therapists challenged Morgan by putting her communication book in different places, behind her, on her left side, on the floor, etc. to progress her in her communication. The next step in the PECS picture communication is for Morgan to go looking for her picture book when she wants to tell us something. They have the object she wants in front of her, but she must give the therapist the picture of it first before she gets it. She was challenged by having the book out of her sight, but did well when looking behind her and to the left to try and get it. I have been working with her on signing some. I help her to sign the word "more" when she wants more of some activity she is doing. She really is motivated by jumping and is starting to sign "more" by herself to get to jump some more. We are still being challenged very much so by keeping Morgan from climbing on all the furniture in our house. Our living room is definitely a place to keep her safe and not a place to have my furniture arranged nicely. Chairs are pushed against the wall, padding is on the fireplace hearth, the ottoman is sitting in recliner. Yesterday, she was standing in the recliner and pushing against the back of it and almost tipped it over backward! All the prayers for improved motor skills have been answered, so I am thankful. Just need prayers for energy to keep up with her and to watch her every second.

Watching Over Us

I have been thinking about all the ways The Lord has taken care of us along this journey. One of the main ways He has supplied our need has been with Morgans nurses. We have been with a nursing agency since she was two. We discovered that there even was such an agency that Morgan would qualify for, through the direction of the ECI program(Early Childhood Intervention) where she received home based therapy. She qualified for 32 hours a week of nursing care. This enables me to be able to work part time, and know that Morgan is taken care of. The nurse goes to school with her when she is in school, and comes to the house when not in school. What I am so thankful for, is that God has provided the perfect, most caring and compassionate nurses for Morgan. The nurse we have now goes above and beyond. She really cares about Morgan and is always coming up with new things for her to do to challenge her to help her learn and develop. She has really been creative this summer. She rearranges our living room during the day, and turns it into Morgans activity room. She made her a ramp to climb, got her a therapy ball, a standing cushion, some books, and some weights. This is the nurse we had when Morgan was two, but she had to quit for a couple of years to stay home with her own children. We did go a year or so with several different nurses that didn't stay long because they were driving from Austin. Then we got another wonderful nurse that just adored Morgan also. She would do anything for Morgan as well. She had to move when her husband got transferred. This was right before Morgans surgery. Yes, it was stressful to think about not having a nurse after Morgans surgery, but God provided! When I called the agency, I asked them to please just see if our nurse from before, that kept Morgan when she was two, would be willing to come back to work. She was! She came back to work just for Morgan! However, she is going back to school to become an RN this fall, so we will need another nurse during this time. But I know The Lord will provide again!

Where she was and where she is now: Her Balance and Motor skills

I had said in the last post that I will be reflecting on where she was prior to surgery and comparing to where she is now. It helps me to truly reflect on the miracle of healing that has occurred in her. I got out some old records from her school teacher. She recorded the amount of times a day that Morgan fell down. She recorded for a couple of weeks. This was in February of 2012. For several days, she had fallen about 15 times during the school day, but for some of the days, it was 30. There were two days where she fell 55 times and the comment from the teacher was " we lost count after that". I was in tears as I remembered how sad I was during this time. It literally broke my heart. It is good to write it down now to express how I felt. But, this is now in the past!! So now I rejoice and rejoice!! She is a new, healed little girl now! Yesterday, the teacher videoed her going up the stairs of the playscape, climbing to the slide, sitting down, and sliding down, all by herself!! Praise God! I had often painfully watched other kids do this, dreaming of her doing it one day. And now she can! And she had fun doing it! God is so good!

Climbing: A Good thing!

Today, Morgan had her therapy. It has been two weeks since her last appointment because of us being away on vacation. She is now only going once a week to Cedar Park outpatient therapy. She will continue at just once a week until school starts, then we will stop going to Cedar Park and she will just continue her therapy at the school. The therapists were impressed with her performance today. The Pt noted how more more motor control she has and more safety awareness and proprioception. She does not lock her knees anymore which means she is gaining strength in her quad muscles. I told the PT she was now climbing on everything, and she thought this was a sign of progress. The therapist in me definitely sees that, but the mom in me, thinks "scary!" She stands on the recliner, walks on the fireplace hearth, and stands on her little table. I am constantly on the look out. She knows "no" now and knows it is wrong, but tests me. Anyway, she had a good therapy session today. She also traveled well in the car. However, she was a different child in the lobby of the therapy office: went "nuts" to say the least. She just does not do well out in public yet, especially in a medical place. She knows now what it is all about. At home, she is much more calm and relaxed. So though still a strugle to go places, still very grateful for how far she has come in such a short time. Very soon, I will be posting about where she was and where she is now. A lot of you may not know just how bad it had gotten for our little girl and it makes seeing her now, so much more of a miracle. Yes, so very thankful for the miracle He had already performed, but still standing in faith for the miracle of total healing for our little girl!

Playing Chase and Hide and Seek

Better behavior and a new phase

Morgan's behavior has been better this week. She is more calm, less agitated, and more focused. She also is traveling better in the car. Yay! She did start a new phase just practically overnight, while we were on vacation: climbing!! She now tries to climb on everything, chairs, the fireplace, the table! She not only climbs on it, but stands and walks too. Scary, when she climbs on our fireplace hearth and walks, especially since we have concrete floors. Although this keeps us on our toes, ( even more so than before), we are happy she is gaining the strength to do it and is developing physical skills as her brain is healing. She can now climb up the steps on the playground at school, by herself. She grabs hold of the handrail and steps up! Good job Morgan! Also this week, love, love, love to sit and watch Will and Morgan play chase. They also play hide and seek. I got some really cute pictures of them chasing each other and her looking for him. I will post them later this week. Enjoying her so much. Thinking about how much God has blessed us so much. So thankful He gave us our little girl back!

Blessed Day

Today was a fun, blessed day. Morgan was calm and happy. She and Will played and played so good together today. It was great to watch them have fun together. Much has happened in the last week. Billy and I just got back from a vacation to Big Bend while my parents and Aunt Ruth kept Will and Morgan. We just got back home today. We were nervous about going and almost canceled the trip last week because of Morgan's behavior. However, after assurance from my parents and aunt, we decided to go ahead and go. Morgan had also calmed down some prior to us going. I think she did okay for them for the most part, according to them anyway, but it was a challenge. She was out of her element, out of routine, and stayed up late at night. Bedtime was the most challenge. Billy and I are so very thankful to my parents and Aunt Ruth. We had a great time, are refreshed, and were so ready to come home and see our precious children.

Smiling and Happy Today!

Trying to stay positive

Yes, trying to stay positive, when discouragement and disappointment are knocking at the door. Morgan had a rough weekend. We went to my parents house, and there were lots of people and kids running around. Morgan was very agitated, and over stimulated. When she is like that, she doesn't focus or interact much. Now today, she is happy and calm. I guess we really just can't take her out to places right now. Her brain just can't process all the information right now. Her system gets too overwhelmed. She is perfectly fine now that she is home. I was so discouraged over the weekend. For one, it was very stressful dealing with a screaming child. Two, I was looking forward to my family seeing how well she is doing. One comment that really helped and encouraged me was from Billy's friend who came down for the weekend. He had seen her in the hospital but then had not seen her since last year. He said she just looks so much better overall. She is more alert, bright eyed, and keeps her balance. He recalled how last year, she couldn't even walk a couple of steps without falling down. Comments like these really help and are appreciated.

Typical toddler behavior

Yesterday, we had family over to our house. Will and his cousins were jumping on the trampoline, and Morgan really wanted to jump with them. I helped her jump while the kids were taking a break(it would be too wild with all of them up there at one time). She did not want to stop. I took her off the trampoline and into the house. She was screaming all the way, but I was smiling. She was acting like a typical child who was upset when she had to stop playing. This just means so much because she used to not even want to play anything, and she used to never show appropriate emotion. She had a good week of therapy. The OT said that she has been the most calm she has seen her in two weeks. She participated and was cooperative, and not agitated. The therapists continue to say how impressed they are with her progress. She also traveled very well in the car this week. We continue to be thankful and count our blessings.

Melting my heart

Today, Morgan and Will played chase again. They played for quite a while. She would turn back and look to make sure he was coming, then smile and laugh and run from him. Billy and I just sat there and smiled. I could have watched them all day. Then Will walked away and sat down. Morgan came over to wear he was sitting and bent over, grabbed his arm, and tried to pull him up to play with her. I can't describe the feeling, but I felt like my heart was melting. I felt so deeply touched. It is so amazing to see a child so interactive and expressive who just four months ago was so trapped in her own world. I have been thanking The Lord again today.

Priceless

So there are some things money cannot buy. One would be watching two siblings play chase together happily. Especially when one of them just had brain surgery three months ago and was unable to even stand or walk just three months ago. I sat and marveled at them yesterday. Such a blessing to see that again. It has been about three years since I have seen them play together because all of that stopped when she turned two and had the seizures. Yes, yesterday was a blessing. I watched Morgan smile and giggle as Will would chase after her. It was so awesome!! Thank you Lord for restoring these special moments that I will always treasure so much. As I always focus and am thankful for the improvements and the many blessings, I also want to please ask for continued prayers. My specific prayer has been for her brain to continue to rewire and to make the right connections, that she can learn and catch up and develop as she is supposed to, the way God created her to be. She needs to be able to understand right from wrong, and appropriate behaviors and actions. She needs to be able to learn in school. Other specific prayers: Thank you Lord, that she will talk, that she will say words, form sentences, and communicate verbally. Thank you Lord that she will say "I love you Mommy and Daddy". I know she loves us, but how how much it would mean to hear it from her. All these things I took for granted with Will because it all just happened as it was supposed to. So thank you all for your continued prayers that mean so much to us.

More calm

The last three days have been much better. Morgan has been more calm and less agitated. She does still have some hyper moments,but manageable. On Wednesday, I was very nervous about my parents taking her to therapy because of the screaming she had been doing while in the car. However, she was pretty calm, according to my parents' report and even slept some of the way. We have been incorporating some of the sensory integration tactics learned in therapy, which have seemed to help. My sister, who is a pediatric OT had also given me some ideas. She said Morgan's little system was just overwhelmed and can't handle alot of stimulation right now. Crowds, loud noises, etc. can overload her system. This most likely explains the screaming and agitation I had called a temper tantrum. Her therapists also explained that her brain is changing and will continue to change for awhile and is adapting to everything. All this is easier to handle when we understand what is going on and why she is acting this way. So we will keep the sensory integration therapy going at home. Morgans nurse is so wonderful to assist with this as well. The therapists were very pleased with Morgans performance in therapy on Wednesday. They continue to be amazed at her progress. The speech therapist made us a notebook of pictures for communicating at home. As I have said before, we are learning as we go. Another thing I have learned about Morgan this week is how to get her to relax before bedtime. She goes for her run every evening and gets good exercise and sensory input. Then, we put her in her stroller to get her to wind down before putting her in bed. She usually goes to bed before Will so we turn on a sound machine to drown out the noise of him getting ready for bed( she gets fussy when she hears him up because she wants to be up too). This may be boring information, but it is good for me to write it down and remember what works. We have had many, many challenging bedtimes before, and right now it is going smoothly. So thankful for that and praying that it stays that way!

Challenges and improvements

Well, this week has had it's challenges, as I talked about in the previous post. She has been very difficult to travel with lately. I think we have finally decided that it is boredom and frustration from being constrained in the car. She is so sensory seeking now and just wants to run all the time. They have been doing a lot of sensory integration therapy with her that has really helped, and I am trying to do it at home as well. She still holds her ear, and I called the neurosurgeon to ask why and what it is she might be feeling. He said she most likely was feeling muscle soreness from the cut muscles and nerve tingling from nerve regeneration. It was good to hear that this is part of the healing process. The therapists also assured us that her behavior changes were common during the first year after a brain surgery. Also nice to hear this is just part of it, but doesn't help the stress levels when you are dealing with a screaming child. We just know now that we can't try and take our places while she is going through this stage. So, family and friends please understand. On a positive note, we have still not witnessed anymore seizures. Her balance continues to be amazing. She is getting so much stronger. In therapy yesterday, she walked up four steps, holding onto the railing by herself, alternating her legs!! This is so amazing. For one, because she has always had to have lots of help stepping up stairs. Two, because she alternated her legs, meaning she was able to step up using her left leg also. (I will post a picture of this soon.) The PT just spotted her, but did not have to help her going up, just assisted some with the descent. So exciting to see the improvements as God is healing her!

Radio Show

Tonight Billy and I are going to be sharing our journey with Morgan on the Christian Radio Talk Show, The What Now Show. It starts at 7:00 tonight and you can listen live online at KBEYFM.com. If you miss it, it will be recorded and you can go to TheWhatNowShow.com/podcasts.

Learning as we go

We are learning as we go along each day with Morgan. Learning about why she does certain things and has certain types of behavior, and what to do in that situation. This is so challenging, mostly because she does not talk and can't tell us what is wrong. Also because she just had brain surgery, everything is changing in her brain, her body is having a hard time adjusting to it, so there are many behavior changes. For instance, today we went to my in-laws to enjoy a fun day with family, some of which we had not seen in a year because they live in Singapore. Morgan began screaming at the top of her lungs, holding her head, and crying hysterically. We thought she must be in pain because she has been holding her right ear, which is right near the incision. We almost took her to the hospital but decided to see how she was after getting home. We also gave her some Motrin. When we got home, she was still a little hyper but much better. Billy and I both looked at each other at the end of the day and both agreed that it must have been a horrible temper tantrum, the worst we have ever seen, which is really saying alot, (most of you know how our son Will was as a toddler). Anyway, we had to leave early today because we didn't know what was wrong and what we needed to do. She is obviously becoming opinionated and didn't want to do what we wanted, so she through a tantrum. Very sad for us, though, because we were looking forward to a fun day. Sometimes it is easy for me to have a pity party, wishing I could just sit back, relax, and enjoy time with family. Then I am reminded of how much God has blessed us, how she doesn't have seizures anymore, how we did get to enjoy a couple of hours of family time last weekend, and that today was by far not the worst day we have ever gone through.

It's Hot! Flushed cheeks after her daily late afternoon run

Long day

Today was a long day for Morgan and I both. We first had to go get Morgan's blood drawn. Her endocrinologist had ordered for her thyroid to be checked again. We had it checked last year and it was low. It was fine in January at last draw, so this is a recheck following surgery. Also, Dr. Stewart ordered some labs to check need for supplements. Morgan has had blood drawn many times before. Never, have we had a challenge like today. I had begun noticing at the last two doctors appointmtents that she was acting more anxious and crying when we went. Today, she was the same way, but very, very upset and crying loudly when we entered the lab. It was challenging and difficult to watch her be so upset, but it really shows that she is aware now of what is going on. Before, she would cry when they poked her but never knew what was going on until then. Today, she knew where she was and what was going on. So hopefully no more lab work for a long time. Then, she had therapy after this. After getting calmed down, she did very well. She continues to communicate with the pictures. After an hour of working with speech and OT, she gets PT. She was very tired by this time and didn't really want to participate. She wouldn't stand still to work with the PT. I told the PT that Morgan has really enjoyed jumping on the trampoline. She also seems to be very sensory seeking lately. The PT had the idea of putting ankle and wrist weights on her for sensory input. Great idea! Morgan was instantly calm and worked with the PT another 30 minutes. As for me, this was a long day on top of being up until midnight last night. No, not because of Morgan(she actually has been sleeping through the night, Praise The Lord). I was up cleaning out my closet. I have noticed having so much more energy now. Most likely for two reasons. First, I get a solid 7 to 8 hours of sleep a night now instead of waking up every hour or so to check on Morgan(like when she was having seizures all night long). Secondly, I have had a ton of bricks lifted off of me. I realize now how much the sadness of before really weighed on me and drained me so much. Of course, today I am not so energetic after this long day, but that is ok, because I am happy that Morgan is doing so much better!

Family Time

On Saturday we all went to the water park at Horseshoe Bay. For most families, this is just another family outing,but to us, this was a milestone. Just the fact that we even attempted to take Morgan with us is a thing to celebrate. Six months ago, we would have not even considered it, would have gotten someone to watch her at the house (or more commonly, I would have stayed home with her while Billy and Will went). So this was very, very special for all of us to go. And Morgan did great! We were there for over two hours. She swam a little, and then just hung out on the lounge chairs and ate a snack. She enjoyed it and did not get fussy! What a blessing! We also went with some dear friends of ours that have boys Will's age. We felt like a normal family, getting to spend time with family and friends!

Swimming at the water park at Horseshoe Bay

Another good report!

Today Morgan had and appointment with Dr. Stewart, her Neurosensory specialist that she has been seeing since she was two. This was his first time to see her since her surgery. He was so impressed! He did some sensory hearing tests on her which showed improved reflexes since the last time. He also helps her with diet and supplements to improve her immune system. He ordered some blood tests to check different blood levels to determine need for supplementing. We want her to have all that she needs but don't want to add in too many things at once because we have seen adverse reactions before. I also had him look in her right ear. She has been holding it lately, pressing on it, and acting like it bothers her. He said it looked fine, that the nerves are growing back on that side and it feels strange to her. We continue to be thankful to God every day. I told Dr. Stewart that we were so blessed, that so many people wer praying for her, and God is healing her. He agreed. He is such a great Christian man and gives God the Glory. He is always saying " it is The Good Lord that will heal her, I just help get her back to the way God created her to be". Thank The Lord for good Christian doctors that God has guided us to!

Playing her tambourine