Update on Sadie

It has been so long since I have written. I wanted to update you on Sadie. Shamefully, I realized that I had never updated about Sadie since all the September tests. That seems like a million years ago. To catch you up to speed, Sadie did have an MRI in September that was normal. She then had an overnight stay at the hospital for an EEG sleep study. From that study, it was determined by the neurologists that the issues at night were night terrors. The EEG was abnormal and Sadie was diagnosed with Benign Rolandic Epilepsy. The night terrors and the epilepsy have nothing to do with each other. Finding the epilepsy was a "bonus" if you will. She was put on two medicines in order to treat the night terrors. For two short weeks, she did wonderful on the medicine and slept great. Ever since mid- October, she has continued with her night terrors. After several attempts by the neurologist to up her medicine, the "perfect dose" has not been found. While the night terrors have improved a bit in their severity, Sadie continues to waken most nights. 

Since June, Sadie has been having weekly therapy from a speech therapist and occupational therapist to address her developmental delays. Sadie is a year behind in both speech and motor skills. Out of all the doctors we have seen, no one has been able to find a reason for her delays. Since insurance isn't covering our speech therapy, the wonderful program of Babies Can't Wait has provided these services for us. The therapists come to our house each week for their hourly sessions with Sadie. We love our OT and SLP! However, when Sadie turns 3 (in two weeks) she loses those services and is turned over to the county.

Sadie had her IEP (individualized education plan) with Columbia County on Thursday. This meeting was to determine eligibility of services for Sadie. Sadie was tested in Dec. by this county team and we met for the results. Sadie qualified on two levels: 1)Significant Developmental Delay and 2) Speech and Language Disorder. They can offer a range of services based on the special needs of the child and what is available. The team, which consisted of the Special Needs Preschool director, another special needs preschool rep, a speech/ lang pathologist (SLP), a  kindergarten teacher, and a OT offered/recommended that Sadie start the special needs preschool five days a week. The class meets for 2  1/2 hours a day and is language based. The SLP is in there four times a week and OT is in there on Fridays. The teacher and SLP co- plan the lessons so everyone is on the same page. The director said that it is pretty intensive and basically speech therapy for 2 hours a day. As much as we are delighted that Sadie has a great opportunity to grow and prayerfully develop in these areas, it is heart wrenching to know that she does in fact qualify for one of the highest services as well as see the severity of her need.

That being said, they raved about the teacher and SLP. Sadie will make the 12th student, and only the 2nd girl! They feel that she needs the five days but are flexible with her needs. As you can imagine, Sadie is sleep deprived and is often asleep these days mid morning. So we are going to start with three days a week and work our way to five.  My case worker from BCW went with me as well as our loved OT, Valarie. Valarie said at the end that she wishes she could have videotaped my face when I was asked if I would let her RIDE THE BUS??!!! Umm…what! Put my tiny 3 year old (who developmentally is 2) on a bus and ship her off??!! I told them that I would most definitely consider it but that there was no way I could make that decision today! I was assured that they are very protective of the children (handpicked even!) and it is a hand to hand exchange, from parent to para pro and driver on the bus. So we will see!!! I was thinking they were doing good to get my baby girl five days a week…now a bus?! The whole thing is going to be a step of faith!

As some of you know, these have been some of the darkest and hardest months Joe and I have been through. The nights have improved a tiny bit with the night terrors. But for the majority, Sadie is up every night. Even if she isn’t having a night terror, she wakes 2 -3 times a night. It is hard to believe that we have been going through this for 6 months. We are exhausted physically and emotionally. At times, I have felt hopeless that things are going to change. But the Lord has been faithful to sustain us, to give us hope, to encourage us through His word, our church, and many of you. Last Sunday at church, our pastor said that God’s mercies are greater than the thing we are being denied and His hope is greater than any failure or disappointments we experience. We were encouraged to continue to rest in his mercies, even if it doesn’t look like what we intended or hoped for.

I am just so thankful for those  who have walked this dark road with us. I praise the Lord for you and for your prayers, and for loving on sweet Sadie. The Lord has used that as well to sustain. He continues to provide for us in ways that aren’t expected…like checks showing up in our mailbox to cover the costs of the very expensive medicines that she is on. It truly is amazing. So thankful for a God who sustains the weary and satisfies the weak…Lord knows we are weak and weary! Please continue to pray for our family and for Sadie as she adjusts to her new role as student! She will begin on Jan. 30. As for the short bus…well, the jury is still out!!!