It has been so long since I posted and to be honest, it's been super busy. I know we are at that end of the school year chaos time. So here's my attempt to fill you in on what's been going on...
We returned from Cleveland and took it easy for awhile while Maddy adjusted to her new seizure free life - she calls it "my eyes are not going up". Maddy was getting super antsy so we actually started her homebound work - a teacher came to the house daily to work with Maddy on material she missed - at the end of January. By early February we were talking about sending her back to school. Her recovery has been so amazing. She even now acts like nothing has happened minus the excitement she has that she isn't having her "eyes go up" anymore. She started back to school and we adjusted to our new routine.
We started taking Maddy to a chiropractor in March to see if that would help her and it's been really great. Our whole family has actually started going as well. She is known around the office as the "lovebug" cause she loves giving out hugs and letting everyone know how much she loves them.
In March I pursued a counselor/therapist for Maddy and found one that was in her school. We met to talk about small goals for Maddy. Though she isn't having any more seizures, she is still having some issues with focus at school and communicating when she gets upset. Don't get me wrong, we have seen improvement with her moods. It no longer escalates super high but she is able to calm down faster than before. We are hoping the counselor can help her use her words to express when she feels sad/scared/happy/mad instead of throwing a tantrum. Since we started up our fostering process again with her doing so well, we went to a training to learn about dealing with kids with trauma and we were able to gleam some information to help her as well. We use choices and assure her that she's not in trouble when she is upset.
In April we went to the beach - one of Maddy's favorite places - for a short visit for Nathan's dad's wedding and then we celebrated Easter. I found it fitting that the day right before Good Friday and Easter Sunday found us at 100 days seizure free. We celebrated with a hiking trip to Paris Mountain and a picnic. As part of Maddy's visit with the therapist at school, we received a referral to get Maddy tested at a local facility that provides Occupation therapy, Physical therapy and Speech therapy.
Just before Maddy's birthday, we had a meeting at her school to begin giving her speech therapy for her sounds like "ch", "sh", "r" and "f". She sees the speech therapist once a week. Maddy had her 7th birthday and she wanted to go camping so we enjoyed some nature trails, fishing, wading in the water, campfires and fishing. Maddy finds it very calming to sit by the lake or ocean and just enjoy her surroundings.
We scheduled appointments for Maddy to be evaluated and she qualified for all three services. Her biggest deficiency is occupational and speech therapy. Between Maddy being pre-mature and the repeated seizures, it's possible that could explain some of the challenges she has had this year with academics and other social areas so we want to equip her as best we can. For occupational therapy, she will get help with her small motor skills - writing, hand-eye coordination, etc. Occupational therapy is help for your occupation which right now for kids is to help with their play and school work. She's had some issues with writing all year so we hope this will help her gain control in those small muscles to improve. Though she is receiving speech therapy at school, she only qualified for it for the basic sounds above but at this facility she qualifies for comprehension and articulation as well. She has had some issues with being able to follow two step instructions or repeat instructions given to her. She makes an assumption about what you want her to do or what you think based on how she feels which gets her very upset very quickly. She qualified the lowest for physical therapy. For right now with 30-60 minutes per week per therapy so we thought doing 3 therapies may be a bit much. We have heard that if we work on these other two areas that there will be overlap to help her in all areas. We are grateful for so many resources and we plan to take advantage of as many resources as we can.
This month despite all the appointments and evaluations we were able to go on a fun field trip with Maddy's school to pick strawberries. The summer looks like it will be full of adventures and busyness. We have a family vacation planned and a camp for Maddy to attend to help her with regulating and de-regulating (helping her learn to control her emotions and how to get "worked up" and calm herself down). We have also planned her follow-up appointments in Cleveland. I had a friend volunteer to go with me so we will leave on August 6th and fly to Cleveland for and EEG and MRI to see how everything is looking post-surgery.
In closing, here are some practical ways we'd invite you to pray with us as we continue on our journey:
1. Maddy is now 136 days seizure free. Pray that keeps happening!
2. This week we begin our therapies two times a week. Right now the only opening was 30 minute sessions. Pray a 1 hour session opens up for both Occupational and Speech and maybe even a physical therapy before or after either of those so we can get her as much help as she needs. I know the summer will have us going all over the place, but we really want to do everything we can to help her and if this is what it takes, so be it.
3. Pray for retention and progress for Maddy. She's been improving in her reading and is reading at grade level now. Her teacher says she is at level on paper but some things still seem disconnected. Pray that these therapies will bridge the gap and provide resources for us to help her. My prayer is that this summer with the combo of therapies and no more seizures that we will really start making some big steps in helping her make up for areas where we are behind.
4. We have decided to hold Maddy back one more year in 1st grade because it's been a long and challenging road. We do hope that when we go to Cleveland that we will be able to decrease her meds and hope that helps. Next year Emma, Maddy's little sister, will be in Kindergarten and their classes are on the same hall. They love to be together and I hope this will help that transition seem a little better. We thought Maddy could use a new start so though we love her current teacher, we will probably have her with a new teacher. Pray the Lord puts her with the perfect one to understand her past and present situation and extend grace and support.
5. Go ahead and pray for our appointment in August. Pray for good results and that we can start talking about decreasing and hopefully coming off meds for good. The generosity many of you have shown through prayer and financial support has enabled us to be able to go to Cleveland and cover all of her expenses so far. Thank you, thank you, thank you!
We are so grateful for where the Lord has brought us and continues to bring us. He has proven Himself faithful - as He always does - to care for our little girl way better than we ever could. The community we have been surrounded by, we feel His presence and love even more. Maddy has been listening to me talk about the faithful friends and family that are praying for her that now when she meets or sees someone her first question is: "Did you pray for my eyes to stop going (seizures to stop)?" She knows the power of prayer! What a beautiful story God is writing through the life of my 7 year old! Thankful to be a part of it and to see His faithful hand even in the hard days. May I see His hand in the easy, good, bad and challenging. He is faithful!
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