Monday, July 11, 2016

Testimony

Near the beginning of 2016, Jake & I had been asked by our pastor to share our testimony and how God has brought us from "tragedy to triumph" with our journey with Madison. I'm just now finally getting it on the blog, but I wanted to share it. I love writing things down because it helps me to look back & remember how much God has been working in our lives. Right now I'm in a season that is super busy, chaotic, and stressful between work, appointments, therapies, church, and other activities. It makes the crazy, busy seasons where I'm overwhelmed, stressed, and wondering what the next steps are for us easier when I can step back, take a minute to breathe, and reflect on God's goodness.


As many of you know, our daughter Madison has had a lot of health issues since she’s been born. She has a rare genetic abnormality that we have no information on, cerebral palsy, epilepsy, one kidney, and global developmental delays along with other issues. Before Madison was born, we had an ideal picture in our heads of what her life would look like. Instead things happened differently, and our plans were drastically changed.

I had an emergency c-section shortly after being induced because the cord was wrapped around Madison's neck. She wasn't breathing after birth, and she was taken away to the NICU while we had to go back to the room and just wait. We didn't get to hold her until almost 24 hours after she was born, and she spent 15 days in the NICU. So instead of spending time with our child at home, we were constantly on the road, or sitting in the NICU or waiting room waiting to be able to see her.
We were able to come home, but things weren't easy. Madison came home with a feeding tube, and pulled it out the first night. She also threw up a lot after almost every feeding due to having severe acid reflux. It finally got to the point where we had to lay down towels & take them everywhere with us if we had to feed her while we were out because we knew it would happen. We had to feed her on a strict schedule constantly recording how much she drank and threw up, and a nurse came to the house every week to weigh her.

At 6 weeks old she had her second hospital stay, with a diagnosis of UTI, pneumonia, and possibly meningitis. She was poked & prodded, had constant blood drawings, spinal taps, and went home with a picc line where Jake & I had to mix up her antibiotic and give it to her.

When she was 6 months old, she went in for a routine ear tube surgery. When she was put to sleep, her vocal chords collapsed and she wasn’t able to breathe on her own. She was admitted to the hospital, and we found out she had RSV, which we didn’t know before she was put to sleep. She was put on oxygen, and even after she had recovered from the RSV, she still needed oxygen when she was asleep. After 2 weeks, she was able to come home, but she had to use oxygen whenever she slept. We later found out she had severe sleep apnea (she was having about an episode a minute). We believe the oxygen monitor saved her life though. After a few months, she had multiple seizures where she stopped breathing, and we may not have known without the monitor because she was asleep when they happened.

One of the scariest moments we have had was Halloween of 2013. Madison had 3 seizures in one day. We had taken her to the doctor that afternoon before she had her 3rd seizure, and they decided to go ahead and put her on seizure medicine. We were on the way to the pharmacy when she had her 3rd seizure. I remember she had fallen asleep, and all the sudden she opened her eyes and looked at me. She had a weird look on her face, so I grabbed her oxygen tank that we still had for her sleep apnea. All the sudden her eyes rolled back in her head & she started to turn blue. It seemed like forever before I could get the oxygen tank to work. Luckily, we were just minutes from Northcrest Hospital. Madison still wasn’t breathing and her face was now turning purple. The oxygen was cranked up all the way, but it wasn’t doing any good.
I could see that her tongue was blocking her airway, and I tried to pull down on her mouth to open up her airway, but she was so rigid I couldn’t move her chin down at all. It probably took 2 minutes to get to the hospital, and I just remember there was a point where I knew there was nothing I could do. I was helpless, and in that moment I had to just give her & the situation to God. I thought she was going to die, and as strange as it sounds, somehow I was able to have peace in that moment. I knew I had done everything I could do, and she was in God’s hands. As soon as we got to ER, she started breathing and they were able to get her stabilized. She’s been on seizure medicine since, and hasn’t had another seizure that we know of.

Despite everything we have been through with Madison, we never considered her to be a special needs child until after we got her diagnosis of cerebral palsy and possibly autism in Spring of 2015. After getting that diagnosis, I thought about it all the way home & all afternoon. I was stressed, worried, concerned, scared… what are our next steps? Where do we go from here? We had to finally come to terms with the fact that we do have a special needs child & she is likely going to be in special education for the forseeable future. How do we protect her? I know how mean kids (and even adults) can be. Thoughts kept racing through my mind & not only was I scared & sad… I was mad. I remember praying, and I just kept asking God when are things going to get easier? Why does Madison keep having to go through these challenges? Why do we keep getting the floor ripped out from under us when we start to think things are looking up? But you know what, God wants us to come to Him with all our burdens. It’s ok to ask “why?” It’s ok to feel pain, hurt & not understand what the bigger picture is. Because we can’t see the bigger picture – but God does. He has had a plan from the beginning for Madison, even before I knew she would be my child.
Jeremiah 1:5 says “Before I formed you in the womb, I knew you, and before you were born I consecrated you…” And Jeremiah 29:11 says “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”
After Madison was first born, I remember asking God “Why? Why us? What did we do to deserve this? Why are we being punished? Why do we have a child who has so many medical issues and has to endure so much? It’s not fair… Why do people who don’t even want children have healthy babies, and the child we planned for has so many things to overcome?” Then one day it was like a lightbulb came on…“Why not us?”
Worry is a sin. It is the result of not trusting that God will do what He says & not having the faith that He will take care of you. This is one of my struggles. It is so hard for me to give up control & to not try to fix everything myself. Does it mean that we can't ask God why things are happening & pour out our hearts to Him? Absolutely not. My relationship with God is just that - a relationship. For any relationship to grow, you have to communicate. Communication & relationships aren't always good. There are hard times & struggles, and God wants us to come to Him with all of our cares, hurts, sorrows, and struggles as well.

Matthew 11:28-30 says, “Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”

One of my go-to verses in all of this has been, "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4: 6-7
God has also used the people at First Baptist Portland and our parents’ churches to minister to us when we’ve been at some of our lowest points. We have had so many people praying for Madison and for us, as well as supporting us with meals, cards & visits when she’s been in the hospital. And we appreciate it more than you know!
Without the support of our parents, family, church family, and friends we couldn’t have come to the place we are at now… especially without the support and help of our parents. They have been with us every step of this journey, and we appreciate them so much.
A dear friend of mine, Shelley Surface, sent me a text when we had found out about the cerebral palsy diagnosis. You don’t know how many times I have had to stop and read this to give myself perspective.


It said… "You are grieving loss. It's ok to do that and to allow yourself to grieve. You have this idea of how things will turn out for your kids, and when someone throws you a curve ball with a bunch of diagnoses you feel like that person that you dreamed about died. You have to redream the dream. Your baby girl is a delight and she will be forever loved by her peers and their families. Don't stress over the Special Ed stuff. You may choose to homeschool or put her in private school. The possibilities are endless. The beauty is, you don't have to know any of that today. Today you get up and you thank God that she can walk, love, cuddle, and accept your affection. You don't get wrapped up in the labels and you ask God how to use her & your story to bring Him glory. He will make Madison's paths straight & yours too. She will grow into a young lady that loves Him & that is all that matters. If she never plays soccer or volleyball... who cares. If she keeps a sweet innocence about her that shouts I am filled with the Holy Spirit... now that my friend is value. You do not know how God will use this, but with your gifts and obedience to the Lord it will be big. It will be exciting to see it all unfold."
Madison's life & our lives are drastically different then we planned. But our ways are not God's ways. He is so much bigger then we can even wrap our heads around. And even though our plans changed & we don't have an answer why things have happened like they have... we have learned more about God in the past 3 ½  years then we have our entire lives. When bad situations happen, you can choose to run away from God, or you can choose to run to God. We have chosen to run to God, and our relationships have grown so much stronger. We don’t know why things have happened like they have, and we may never know the answer, but we do know that He is using this for His glory & that He has a special plan for our sweet, strong, brave little girl.
We have had to hit rock bottom and come to a place where we had no choice but to surrender this situation & Madison to Him. There is no way we can navigate the situations we have been in & what the future holds alone. He has been our strength, provider, comforter, healer, and so much more. We can't see the big picture, but He already has our lives planned out. We just have to surrender & trust in His plan. We’ve had a lot of times where we have thought “How are we doing to do this? How are we going to pay for all the extra therapy and help that she needs?” But God has always provided, time and time again.

We have a long road ahead with Madison, but we can't place limitations on her - she has made so much progress & is doing so well. She's riding a tricycle, running, hopping, pretend playing, dancing, cheering, and sweetest of all - saying her prayers. And we also can't place limitations on God. The sky is the limit, and we want to be obedient & let Him lead. Struggles in this world aren't something to be ashamed of or discouraged about. God is at work in our struggles and suffering & He uses them to spread the Gospel to those who don't know Him and to strengthen others to speak up about Him. Whatever God allows to come upon you, He also determines what its use will be in drawing others to Him, and He will use your circumstances to connect with others who need to hear that there is hope in the midst of difficult circumstances.


*Since we gave this testimony, Madison has been weaned off of her seizure medicine, and has been seizure free so far. She has had surgery to correct the kidney reflux she had, and had a stent put in which will be removed in a couple of weeks. Hopefully this will correct the kidney reflux & prevent further infections which could damage her kidney. She also is still behind on her development & speech, but she continues to make progress! The other day she was playing with her Anna (Frozen) doll, and even said "Hi Anna. My name Madi." Huge progress! We also have had financial ups and downs & insurance issues. Our insurance will not cover any of Madison's speech sessions, so we have been paying out of pocket. However, we were able to receive a grant that originally we thought would cover about 17 sessions. We found out a couple of weeks ago that they were able to get the session prices down, so it will cover almost 50 SESSIONS!! God is so good, and He continues to show us that He is in control & has His hand on Madison.*

Wednesday, April 13, 2016

Jehovah Jireh - The Lord our Provider

A while back, I did the Experiencing God study. One of the things we talked about was the different names that we attribute to God, and that people really come to know different attributes & names they call God based on how He reveals Himself to us during our experiences. For example, Lord, Savior, Healer, Provider, Father, etc. For me, Provider has been one that has been so real for me over the past few years. 

Jehovah Jireh - The Lord our Provider

God has provided for us time & time again, and certain things really stick out to me since Madison has been born. When Jake & I first got married, we were so tight with our money and some months cut it pretty close until our next paycheck came. And we both had full time jobs at this point! But we always have given our tithe, and that's something that we have always been on the same page about. Fast forward to the time Madison was in the hospital for a couple of weeks, and as this was at least her 4th hospital stay in 4 months, I told Jake I just couldn't do it anymore. I needed to stay home with her. With no plan, no time to save up any money or put a safety net in place, I quit my job & stayed home with Madison. We had no idea how we were going to make things work, but we continued to tithe & at that point had to give it over to God. 

The crazy thing is... We have never missed the extra income that came from my full time job. We have never had a month where we didn't know how a bill was going to get paid, or how we were going to fix something that had broken. Time & time again God has provided. Whether it was a gift from family, an unexpected bonus, a bill that came in less than expected, etc. We no longer are so tight with our money when opportunities to help others come up. Can we always do more... YES! But some of the things we have been able to do have been such blessings to us. 

Just in the last couple of weeks God has once again shown He is in control & He will provide. We have been trying to get disability for Madison for several months now (for the 2nd time), and we have been denied based on income - even though we are expecting being out a lot of money this year for therapies for Madison. Through the whole process, I have told myself that if it works out great, if it doesn't we will make it work. I wasn't going to stress over it. I have had a few moments of stress of course, but not like I thought I would. Unless something with our financials change, we won't be able to get disability. We also aren't 100% sure if insurance is going to cover any of her speech therapy - there has been some confusion on that. We thought she would get 20 sessions covered under insurance, but that may not be the case since it's not for rehab or autism (even though she has apraxia, epilepsy, CP, genetic abnormality, etc.). The apraxia may allow coverage, and we haven't gotten any bills yet, so hopefully she will be able to be covered for those 20 sessions. We are currently on her 21st session and have started self pay. We found out a couple weeks ago that she received a grant we applied for at the beginning of the year from Small Steps in Speech for $2,000! So that will cover about 16 speech sessions! Right when our 20 insurance visits run out, we hear news of the grant... all thanks & glory to God! 

I've talked to several people (even people I don't know very well), and they always tell me they will help any way they can. And I so appreciate people's kindness & willingness to help. However, I'm always so happy to share with them how God has provided for us, and how He continues to. And I pray that when things get tough (because they will), I will remember that God is in control and He gives us everything we need. (Really much more then we need)! 

Monday, March 14, 2016

March 2016 Updates

I haven't written an update in a while! Things have been super busy! Here's what's been going on with  Madison & us lately...

Madison has been doing really good! She's going to developmental Pre-K four days a week for about 3 hours a day. She loves school! She always is happy when we take her & she seems to really enjoy going. Apparently the kids like her too which makes me very happy. I was really worried about her having friends & engaging with the other kids because this time last year she wasn't interested in playing with or being around other kids her age.

Speech:  Madison is definitely talking more & is trying to imitate everything we say. She's still pretty far behind for her age, but she's definitely improving! She really loves talking on the phone. She will get the phone, say hi, and then just start jabbering away! She's going to private speech therapy 2 times a week and is also getting speech through the school system.

PT:  Madison has been going to a new PT for about 9 months now, and she she made big improvements! She's still wearing AFOs (braces), and I think they have made a big difference in her stability. Without them on she still is toe-walking some, but she isn't walking quite as unsteadily as she was. She is also almost jumping off the ground. Every now & then she will get it! She is doing great on the stairs! She is able to go up & down the stairs one foot at a time while holding on to the rail without assistance! She also really likes walking on the treadmill & counting to 30 while she walks :)

OT:  Madison also has been going to a new OT for about 9 months too and she always is excited to see Mrs. Amy. She still has some weakness, but is also improving! She even stacked 7 blocks by herself at school last week! She knows and can name most colors and shapes, and is making progress drawing lines and stringing beads!

Cardiology: Madison had her PDA repaired last October, and we went back for a follow-up in January. Everything looks great and she was released from cardiology! One doctor down!

ENT:  They haven't been able to see Madi's second set of ear tubes when her ears have been checked, so they likely are out. She doesn't seem to be having issues though hearing or with infections so it's not a big deal right now. She will likely have another sleep study this summer to see if her apnea has improved, stayed the same, or gotten worse. Her sleep study last year was much improved from her first one, but she still did have some apnea.

Neurology:  Madison has been seizure free since 10/31/13, so her neurologist wants to try weaning her off her seizure medicine to see what happens. We started decreasing it last week, and so far no issues. Next Wednesday we will call him back with a report, and if she has no issues will reduce her dose again. We will keep doing this until she is off her medicine if she has no seizures or issues! She will have a repeat MRI next summer (2017) to check on her cortical dysphasia and Chiari malformation.

Urology:  Madi had to have a nuclear cystogram today to check to see if she still has kidney reflux. Her last test for this a year and a half ago, the reflux had gotten worse. The test today was horrible & it was about an hour long. Madison had to lay on a narrow table & they had to strap her down from her chest to her ankles so she wouldn't fall off or get hurt. She also had to be catheterized, so that was no fun. How do you explain to a 3 year old what is happening? Very very hard to do. She cried the whole hour the test went on, but we got good news out of it & she won't have to do it again! The test showed no signs of reflux!! So this means she won't have to have surgery to correct it & she was released from urology! Another doctor down! She also has been taking a daily antibiotic most of her life to help prevent an infection since she only has one kidney & infections can cause scarring and damage. She also is able to stop taking that!

Nephrology:  (Kidney Doctor) Madison goes back to her kidney Doctor in July for a checkup. She will likely continue to see this doctor since she does just have one kidney. She will have to have her blood pressure, urine & creatinine levels checked each year.

Insurance / Disabiloty:  I'll just say... Nightmare. We applied again for Madi to get SSI disability and were denied based on income. Filed and appeal & haven't heard back yet. I was working with Diane Black's office to see what we could do & today was told that unless something changes with our income we will keep being denied. It's just so frustrating that even if we have to pay over $20,000 this year out of pocket in therapies, etc. it doesn't matter. It's very difficult to get additional resources to help get Madi the therapy she needs without using the majority of savings, etc. but we will do whatever we can to give her what she needs. And I'm not worried or stressed out about it... Things will work out & God has provided this far. I know that He will continue to.

Madi is still doing cheer & loving it! It's so exciting to see her doing something that she enjoys so much, and it has been really good for her!

Jake & I are just working & running Madi around :)
Life is hectic & busy, but it is so good! God continues to be so good & we are very blessed!


Friday, January 22, 2016

January 22, 2016 Snowstorm

In Tennessee we don't get much snow. I can remember a handful of times in almost 30 years that there has been a significant snowstorm (at least for us). One was January of last year, and I was stuck out of town for part of it with friends working. Making our way home from East Tennessee was interesting to say the least. Jake had to work part of the day today, but Madison and I have been warm & cozy at home. We got 8-10" of snow, with drifts of even more snow! Temperatures aren't warming up until Monday either, so looks like we will be stuck inside all weekend. I think I will be going a little stir crazy to say the least. Good family time though!

When Jake got home from work we took Madi outside. Last year she hated the snow, so I didn't have high hopes for her enjoying being out in it. It took her a little while to get out of the garage into the snow, but she finally walked around a little in it. She also played in her playhouse some & liked that. I think her favorite part of the snow day was pulling icicles off & licking them. I think Jake had more fun then Madison did though - he was jumping into snowpiles & doing snow angels! We tried to make a snow man, but the snow wouldn't pack, so no Olaf today. Even though Madi didn't like being outside that much, I'm still glad we got out in it because that much snow doesn't happen often here! Here are some pictures from today!