I'm not even sure where to begin... Lets start with the good of this week.
We picked up my mother-in-law, Alex on Monday and boy was Maddie happy to see her "Oma". We have been so excited to see her and the trip couldn't have come at a better time. She had actually booked her ticket before all of the medical issues happened. God knew that we would need her around to help us out. We got a phone call on Tuesday that her medication would be in on Wednesday. We were so excited! This medicine is what we are hoping will completely put an end to her infantile spasms and hopefully correct her hypsarrhythmia. We had heard this medicine called a wonder and miracle medicine. So on Wednesday morning we woke up as if it were Christmas. We would jump at every loud truck passing by, just to make sure it wasn't the UPS guy passing our house. We finally got it in the afternoon and gave her the first dose around 4:00pm. We made sure to pray over her before giving the medicine to ask that God would be with her as we tried the first choice of treatment. Thursday came around and she was not happy. She screamed all day. Nothing I did would console her. I bounced, rocked, sang... you name it I did it. I was crying with her at one point. I just wanted her to be happy and that obviously wasn't going to happen. I finally decided to take her to the park for a stroll. I needed some time away and she needed a nap so bad. The park was what we both needed. She fell asleep and I got to rest my mind. I kept wondering how in the world were we going to get through this? I was thinking to myself surely every day wont be like this??? Well Friday came a long and things weren't much different. By 7pm I was mentally and physically exhausted and so was poor Maddie. Chris looked over at me and reassured me that I was dong a great job and things would get better. Thank goodness for that man! He knows how to lift me up when I'm down. I went to bed dreading today.. Chris was going back to work for the first time since everything happened and that meant I was going to be alone. We both prayed that today would be better for her....And what do you know :) Today she was so much better. She still seems a little lethargic but she was so much happier. I also, realized that we were seizure free today. What a BLESSING! I am so thankful for her happiness and I pray that she continues to be my happy little girl.
Even in the low times I feel God's presence. He keeps reminding me in small ways that I am not alone. And that this is his mighty plan. I keep thinking about Chris and I making the decision for me to quit my job to stay home with Maddie. That was God preparing us for this. I can't imagine the stresses we would have right now if we were both trying to work. We were so happy we had the opportunity for me to stay home with her....little did we know it would mean even more to us now.
I know I have said this over and over but we would not be able to wake up everyday without the love you all are showing us. It makes such a difference in our days and mood. Please, please, please continue to lift our family up in prayers. I have no doubt that your prayers are being heard and we are feeling them every day. Please pray that the medicine will not bother her like it has been. And please pray that it does the job and stops her seizures. Of course Chris and I need prayers badly as well. It's absolutely heartbreaking to not be able to help your child. Strength and patience are a necessity in this journey we are on so please continue to pray.
Before I stop the rambling, I also want to say thank you to those of you who are sharing our blog on your facebook. The more people praying the better. So please feel free to share away and to add us to your church prayer lists. You guys are AWESOME!
As always...We love you all!!
Chris, Heather and Madilyn
Blogging about being a mom and wife. I tend to focus most of my posts on the current happenings of our daughter, who is fighting a disease called Tuberous Sclerosis Complex.
Saturday, April 27, 2013
Tuesday, April 23, 2013
A week past
Today marks a week since we brought Maddie home. It has been filled with so many emotions. Some days I feel like I can conquer this disease by myself and other days I feel somewhat hopeless. Thankfully, the down times are quickly gone thanks to all of you.
While we were in the hospital I wasn't sure what to share with people. I didn't want to not tell people because I knew we needed the prayers, but I also didn't want people to think we were asking for attention or sympathy. As most of you are aware, we pretty much plaster Maddie all over facebook. We actually catch a lot of flack for it... But I truly believe now that this was a part of God's plan as well. We have friends and family who have never met Maddie before but through facebook feel like they know her because they ALWAYS see pictures of her. I am so touched at what social network has brought to us. So many people have reached out to our family with prayers, kind words and support.
Maddie has been hanging in there. She is still having her seizures but they do seem more manageable now. However, it's still heartbreaking to see your child go through these things. I don't know how many times I have prayed for them to be taken off of her and put onto me. I continue to tell myself that the plan God has for us is far better than any plans Chris and I could have ever thought of. We are trucking along but still need prayers. We can tell they are working and we appreciate them more than you will ever know.
I will try to update this periodically to let you know how Miss Maddie is doing. Hopefully I'll do better than my past attempts at blogging :)
Love always,
Chris, Heather and Maddie
While we were in the hospital I wasn't sure what to share with people. I didn't want to not tell people because I knew we needed the prayers, but I also didn't want people to think we were asking for attention or sympathy. As most of you are aware, we pretty much plaster Maddie all over facebook. We actually catch a lot of flack for it... But I truly believe now that this was a part of God's plan as well. We have friends and family who have never met Maddie before but through facebook feel like they know her because they ALWAYS see pictures of her. I am so touched at what social network has brought to us. So many people have reached out to our family with prayers, kind words and support.
Maddie has been hanging in there. She is still having her seizures but they do seem more manageable now. However, it's still heartbreaking to see your child go through these things. I don't know how many times I have prayed for them to be taken off of her and put onto me. I continue to tell myself that the plan God has for us is far better than any plans Chris and I could have ever thought of. We are trucking along but still need prayers. We can tell they are working and we appreciate them more than you will ever know.
I will try to update this periodically to let you know how Miss Maddie is doing. Hopefully I'll do better than my past attempts at blogging :)
Love always,
Chris, Heather and Maddie
Tuesday, April 16, 2013
Madilyn
As most of you know our world somewhat changed on Saturday. It actually kind of started on Wednesday evening before church. I was feeding Maddie and she kind of had a twitch but it honestly didn't look like anything more than that. By Friday I started noticing a small trend. She was twitching when she was getting tired so I went straight to the pediatrician. They were going to refer us to a pediatric neurologist in Tulsa for an EEG to rule out seizures. It was going to take a week to get into them. At the time it seemed like a good thing...If they aren't getting us in that day it must not be anything too bad. Once again they weren't crazy seizure like activities. By Friday night Chris and I had noticed these looking worse and her face making different movements that we did not like. Saturday morning we headed straight the St. Francis Pediatric Trauma Center. We figured that they would be the best place to go if something was wrong, since it was a children's center. They quickly got us admitted after seeing a video of one of her episodes and that's where everything went a little blurry. The first round of testing began... They drew blood to check her blood levels. They were thinking her potassium, electrolytes or sodium may have been off which could cause seizures. They then did a 20 minute EEG. Maddie did great with the test she laid there like a champ as they hooked her up to 30 or so electrodes. I think Chris and I were hurting worse at that point. Seeing your beautiful perfect daughter hooked up is an awful feeling. Later on that day the doctor came in and broke the first part of our not so great news. Her EEG was abnormal and they confirmed that she had a diagnosis of Infantile Spasm which are caused by hypsarrhythmia. It's where the brain sends of chaotic brain signals. Even though we thought something may be wrong, the news hit us like a ton of bricks. They were going to need to put on a EEG for 24 hours and monitor her by video as well. The placement of the 24 hour EEG was the worst thing I have ever been through. Maddie was screaming and Chris and I could only sit there and look at her while she was in such distress. It was the most helpless feeling ever. She ended up being on the EEG for over 30 hours. Finally yesterday they were going to do an ultrasound on her kidneys, and abdomen to look for tumors that could be caused by a disease called Tuberous Sclerosis. They said that some babies who have IS can also have Tuberous Sclerosis. They also wanted to do an MRI to take a look at her brain. After finally getting the 24 hour EEG off they took her back for her MRI which was under sedation. It was another experience that no one should have to go through. She screamed as they were sedating her and was fighting the sleep so bad. She finally gave in and they took her limp body back to the room. We got the results back from the ultrasound that there were no tumors on her ultrasound and we were thrilled! We just knew her MRI would come back clean. Unfortunately, we were wrong. The MRI came back with tumors on it. This news was the most devastating news your ears could hear...We looked down at our baby girl with tear filled eyes. We didn't understand how this could be happening to her and our family? After emotions of hurt, sadness, guilt and many more, we felt the prayers and realized that these conditions just make our precious girl that much more precious. We let it all out and then turned our eyes to the only one who can comfort us, God. We knew that we had been put in a crazy spot for a reason. God had entrusted Chris and I to take care of this precious girl because He KNEW THAT WE COULD DO IT. What an honor to be her parents! We have a lot of work ahead of us.There will be treatments to try and stop these spasms and unfortunately the TSC will be a condition she lives with. That being said some people live a normal life with this disease. We are hoping for that, but will not be discouraged if that isn't her path. We will change our normal and make it a new normal. I dislike the word normal anyway...Who wants to be normal? Not Miss Maddie!
We are absolutely amazed by all the love, support and prayers that we have received. God has blessed us so much. He placed each one of you in our lives to help us get through this and we thank Him and you for that. We will need a lot of prayers for strength, patience, knowledge and much more. We will make it through this, I know we will. We are planning on getting involved with awareness groups to try and help others with this and we are going to ask our friends and family to get involved with this as well! The official website for the TSC is tsalliance.org. You can check it out and get yourself aware with the disease.
Once again... We can't think you enough for your prayers and please do not forget about us as we still need prayers. We love you all!!
Chris, Heather and Madilyn
"Whenever God gives you a gift, he wraps it up in a problem. The bigger the gift you have coming, the bigger problem you will receive. But the wonderful thing is that if you look for the gift, you will always find it."
We are absolutely amazed by all the love, support and prayers that we have received. God has blessed us so much. He placed each one of you in our lives to help us get through this and we thank Him and you for that. We will need a lot of prayers for strength, patience, knowledge and much more. We will make it through this, I know we will. We are planning on getting involved with awareness groups to try and help others with this and we are going to ask our friends and family to get involved with this as well! The official website for the TSC is tsalliance.org. You can check it out and get yourself aware with the disease.
Once again... We can't think you enough for your prayers and please do not forget about us as we still need prayers. We love you all!!
Chris, Heather and Madilyn
"Whenever God gives you a gift, he wraps it up in a problem. The bigger the gift you have coming, the bigger problem you will receive. But the wonderful thing is that if you look for the gift, you will always find it."