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!