Second Opinion for Sadie

Sadie had a second opinion at Children’s Hospital in Birmingham yesterday. We were very thankful to get this appointment. It has been a long five months since the last EEG.

In April, Sadie was put on a new medicine that seemed to work. She began sleeping well and her seizures were seemingly under control. The down side was that it caused her to regress in her language as well as potty training and motor skills. With our neurologist in Augusta, we decided to take her off that med and try a new one. She has been on the new one since May and we have seen no improvement. She has woken up multiple times a night since May. I think she slept 1 night in all of June and July! She is having multiple seizures each week and most nights. Overall, Sadie is simply not improving. After the regression, her OT and I feel that she has not gone backwards anymore, but is not progressing either.  We are obviously discouraged by all of this and just want someone to lead us in the right direction. Without getting our hopes too high, we wanted to be optimistic about the appointment but realistic at the same time. We have honestly just felt so let down this past year by several doctors.

The appointment could not have gone any better!!! We are beyond thankful for this man’s wisdom and direction! It is always hard to sum up the past three years with Sadie and give an accurate portrayal of what her issues have been. As we waited during the EEG, I attempted to make a time line of all the events of the past three years and was amazed all over again at how nuts it has been!

Our prayers were answered and we praise the Lord for His goodness! Dr. Mathisen definitely looked at Sadie holistically (WHOO HOO!!!), did not make his judgments on the EEG alone, gave us great direction on the next steps (HALLELUIAH THERE IS A NEXT STEP!), and changed/tweaked her meds (YEA!!!) It was the first time that we felt like a doctor completely understood everything we have been saying for this past year!

Dr. Mathisen could understand why the neurologist in Augusta diagnosed Sadie with Benign Rolandic Epilepsy (BRE) bc her EEG is very characteristic of BRE. However, looking at Sadie holistically from the beginning of her life, he can see that there are discrepancies. For example,  her first seizure in Macon, at 7 months old with the flushing red of her face, rapid blinking, etc…is not characteristic of BRE, the age onset is too early to be BRE, as well as the fact that these type of seizures have happened three times. She has had seizures unrelated to sleep (not characteristic of BRE), the fact that it has been such a challenge to treat the seizures (not characteristic of BRE), all the other issues with her developmental delay, speech disorder, sensory disorder, etc…has to point to something. Usually he said all these things do stack up and point to something (DUH….what we have been saying all along!) He said it was very suspicious that we are not getting any results with Sadie’s meds and that we should be bc BRE is typically easy to treat.

He also pointed out that both meds she has been on go through the sodium channel. Since neither of these meds have worked, he did a genetic test on her SCN1A, which I don’t quite understand yet, but basically there are types of epilepsy that result in a ”genetic mistake” with this gene. Sadie did well on the blood work for that! He lessened one med, took her off another one, changed one, and put her on another type of med that would produce  “quick and easy “ results to lessening the seizures at night (WHOO HOO!) This particular med is temporary but will help him to further see what is going on! Also, he scheduled Sadie for a 24 hour EEG in a month or so as well as a spinal tap that will determine other genetic factors with Sadie’s neurotransmitters. He also took off the “Benign” part of her diagnosis saying that it is “definitely not benign”…for now he is calling it Partial Epilepsy.

It feels so good to finally be HEARD and for someone to lead us in the right direction. Of course, these tests can come back negative, but it is a place to start. Joe and I both feel SO confident in this doctor and are more than willing to drive the 5 hours for follow up visits and testing. So thankful for how the Lord directed us to Dr. Mathisen and answered our prayers! Thank you for praying with us and being a part of what God is doing in Sadie’s life and ours! We are always so grateful!

The hunt continues…but this time we are renewed and hopeful that we are on the correct course…finally!

We are home!

Sadie knocked out after getting all 27 leads attached. It took 45 minutes for the tech to glue them to her head. It was not pleasant, but we made it!

We are so proud of our little trooper!!! She did so well (after the lead hook-up). Though we did not get the wireless room we were hoping for, she did great being confined to one room for three days!

One reason Sadie did so well in one room was from all the wonderful visitors she had who came bearing gifts! She even had gifts arriving in the mail...you'll notice lots of pigs and lots of pink!

We are back home! We were released around 5 tonight. It has been a roller coaster day of emotions. As of this afternoon, Sadie had not had any significant seizures. I was feeling very discouraged and desperate for something to happen. The plan was for the nurse to “startle” Sadie towards the end of her nap in order to see if a seizure would come(something similar to this happened on our first day by accident). After 1 ½ hours of trying to get her to nap, Sadie finally fell asleep at 2:20. Less than 40 minutes later, and many desperate pleas to the Lord, she seized on her own. The nurse was on her way to arouse her when she saw it happening on the video monitor as well as the EEG.  I have never been more thrilled to see a seizure!

From the seizure, they were able to determine that it was a Benign Partial Seizure, which is from the type of epilepsy that we already knew she had from the September EEG, Benign Rolandic Epilepsy (BRE)or Benign Partial Epilepsy, which typically presents with night seizures. In September, we went in because of the night terrors (or so we thought) and also discovered that she had the BRE. At that point, we were unaware of any seizures. They put her on meds to really treat the night terrors, because they wouldn’t normally treat the BRE if there were not any symptoms (i.e. seizures). This has done little good as she continues to wake throughout the night. So we really didn’t learn anything new…just that now she is having seizures due to the epilepsy that she has. We learned that the seizures are not damaging her brain and that she will eventually grow out of this epilepsy (that is the Benign part). From the EEG, we also learned that is “very, very active” meaning that at night her brain is abnormally firing at a high rate. However, there is not much they can do about this.

The discouraging part for me was that we were basically told by the doctor (who is an expert in epilepsy, however there was a language barrier as well as cultural barrier- you can imagine the frustration) that there was not much they could do for Sadie. They would continue her on the epileptic medicine and increase it as need be, but their goal was not to end the seizures, just decrease them because they were not causing Sadie any long-term damage. I was told basically and I kid you not, to not worry that Sadie would grow out of this in FIVE OR SIX YEARS!!!! When I asked about her sleepless nights, I was also told that it was not a big deal, that she would get the sleep when she needed it and there was nothing they can do for that either. Her “natural arousals” that she has several times a night were normal and eventually she would adjust to her natural sleep pattern. As for the times she wakes at night from seizures, she would eventually grow out of those to!

 I really can’t even describe how I felt as the Dr told me that none of the things we have been experiencing for the last 8 months are coming to an end any time soon…like five or six years. At this point, I can’t even wrap my mind around it. We would love for you to pray that the Lord would allow us to process this information and adjust to the fact that what we have been living is our long-term reality. I trust that the Lord’s grace is sufficient for us, though I admit I have no idea how we are to keep going at the rate we have been experiencing. I also know that He gives us His daily bread for today, not tomorrow. So By God’s grace we are going to choose to live one day at a time, receiving His tender mercies afresh each day. I will already beg for your prayers for this because I have recently felt at the end of my rope, not knowing how much more we can take.

I hope this all makes sense. I am exhausted physically and emotionally so I am sure I have left something out. Please feel free to ask questions if it is unclear. As always, we are so grateful for your prayers and the many ways you have walked this with us. We have felt so loved by our Church, family, and friends. So thank you. We love you!

When wondering “why Lord?” I keep thinking of the verse from John 9:3,” But this happened so that the work of God might be displayed in his life”.

The dreaded EEG

What a long day it has been! We were admitted to MCG this morning for round two of Sadie’s EEG. We were not able to get a wireless room this time. That was a big disappointment, but so far hasn’t proved terrible. Of course they didn’t hook her up to the leads for several hours. It took 45 LONG minutes to glue the leads onto her head…all 27 of them. 4 had to be redone because Sadie had managed to knock them loose. I have always thought Sadie was a fighter, but now I am convinced! The girl might be little, but she is strong!!! It took both me and Joe laying on her and holding her head and we still struggled! It was just as awful as the first time but at least we were prepared this time. They did try to sedate her with Benadryl, but that did not work. The only benefit to the Benadryl was that right after the tech was done, she fell asleep on Joe and had a nice nap! It did nothing to calm her down or prevent her intense crying/screaming during the whole ordeal.

A positive note (in a weird way) is that when she woke from her nap she had a short spell of shaking. So that was good to be recorded for the doctors to see. Our afternoon was pleasant with visits from two sweet families! We were given yummy treats, a delicious meal and good fellowship! It helped make the time pass! Joe and I also got to relax and read while Sadie slept! The nurses are really kind and the same ones from before. We even have the same room…just not wireless!

Thank you for praying. You can continue to pray that the night would be “wonderfully horrible” as my friend Ali put it! Wonderful in the sense that she will have seizures…such a paradox! Presently, Sadie is having a hard time falling asleep. You can pray for that too!

Second Round of EEG

We go in today for another EEG sleep study. We are scheduled for 3 nights at the hospital. This came about from discovering that Sadie is having seizures while sleeping. This has been happening for the past 3 weeks. The only reason I found out was because I was sleeping with her one night. We have a strong feeling that she has been seizing in the night for some time. This would explain why she wakes up most nights. The type of epilepsy she was diagnosed with in September is in fact night seizures. But because she was on seizure medicine, we assumed she would not be having any seizures, especially since we were unaware of previous seizures. Of course, we could be wrong...but this study this week will determine (LORD WILLING) the answer.

We are honestly dreading this procedure. It was dreadful getting all the leads (20- 30 leads glued  on her head...did I mention she has sensory issues!) in September and then keeping her occupied in a hospital room for 24 hrs. much less a possible 72 hr. ordeal. 

We would appreciate your prayers for this as well.

- Mainly, that the doctors would have wisdom to determine what is going on

-that we would get a wireless room (there are only 2 on the unit). This would allow us to at least leave the room and walk the halls

-that Sadie would have her seizures so the EEG would capture it

-rest for us in the midst of poor sleeping conditions

-possible sedation for Sadie while the leads are attached

Our Church has been wonderful and meals are all set up for us. Joe's parents have Noah and Madeline for the week. I will do my best to keep this updated. We covet your prayers for our family. The verse that keeps coming to mind is Isaiah 26: 3-4   "You will keep in perfect peace him whose mind is steadfast, because he trusts in You. Trust in the Lord forever, for the Lord, is the Rock eternal".

Little School Girl

Happy Girl at school

You can see that "lovie" is never far from Sadie. Lovie now has blue paint and lots of other school wounds!

This is not a great picture of Sadie, but a realistic one. You can see the dark circles under her eyes from the 8 months of interrupted sleep.

Sadie started school on January 30. She has continued to adjust as the days go on. She has a hard time dropping off every day. The teacher said she cries hard for about five minutes and then does great. She loves Chloe, the only other girl! Though one day when Chloe was absent, I was told that Sadie was holding hands with Chloe's man, Donnie!!! The teachers were hootin' and hollerin' saying "what happens at school stays at school"...they would not be telling Chloe!!! I thought that was priceless!

 I have been more than encouraged and impressed with her teachers. So thankful! Ms. Brooks will even text me and let me know how she is doing, especially when it has been a bad drop off. It is obvious that they already love and care about Sadie. It makes this transition so much easier. We totally see the Lord's gracious hand in this as well as moving us to this house, this county, which  puts us in this school system.

Sadie also started riding the bus in the mornings last week. The first day was beyond heartbreaking as we were both sobbing. It felt very much out of my control and I just wondered what she was thinking as I put her on this bus of strangers and it drove away. I was able to call the driver, Ms. Pam, a little later and she assured me that Sadie had done well and stopped crying soon after they had left our house. Each day got better and better and by Friday, she was not whining or crying! I am hopeful that this will continue to get better.

We continue to be amazed at how the Lord provides. Just two weeks ago, a card showed up anonymously in the mailbox with $100, a family cousin randomly (not really, God's providence ) sent a check for $140... the exact amount of one medicine for one month, and another one for $200! We have also been taking Sadie to holistic doctors and this is an out of pocket expense. They have encouraged us to look at the ways we are eating and to begin eating organically. This is hard in many ways...I am not a healthy eater and it is expensive to do so. However, I would do anything for Sadie and so the research begins. The Lord has been gracious to provide friends in our lives who are already on this path, so that is super helpful.

God continues to be real to us and is tenderly carrying us through this time. We praise Him for His grace and all the ways He leads us and keeps us from falling.

Thank you for being one of the ways he carries us...through your prayers, emails, texts, calls, meals... We are not meant to carry this burden alone. Grateful for your willingness to shoulder this trial with us.

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!!!