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.