Reese McClain in one of my favorite pictures ever. 

From the desk of Kyle

When we started this blog we had two purposes. The first was to keep up with family and friends about our journey with Reese McClain. But the second more important purpose was to help other families as they discover and research their new journey with a special needs child. These days one of the first things any parent in our generation or younger does is to Google for answers when it comes to their children. Having a medically fragile child with special needs, causes you to stay up for all hours of the night researching new studies, new blogs, and reading complex medical journals. It can sometimes be very overwhelming and downright scary.

When we first discovered Reese McClain’s had MECP2 Duplication Syndrome, we searched the internet for answers. We found some medical research, a few good blogs, and a very helpful facebook group. We’ve learned a lot these past 2+ years and we’re still learning every single day. We thought we would give our experience with a special needs and medically fragile child. This advice is from our experiences with our journey and these opinions are our own. Our experiences might be very different from yours, so please use our experience as a tool, not fact. Please comment below with any questions you might have.

(We also understand that we have many international families that discover this blog and we’d like for them to understand that experiences can be very different from country to country. This is ours in the United States.)

We’d like to start with the medical side of things. This is an area where I have surprised myself with overcoming my control freak fears of hospitals, needles, and doctors. A while back Elizabeth and I were becoming overwhelmed with Reese’s situation and we sat down and decided that we needed to divide things up. I’ll be honest in saying that I was putting too much responsibility on my wife and not sharing the load. So we made the decision that she would handle therapies and I would handle medical. This has been by far one of the best decisions we’ve made when it comes to Reese. Elizabeth schedules and fights for Reese on the therapy side of things, she talks with therapists, follows up with that type of paperwork, and keeps the calendar for therapy. I’m very blessed to work for a company that is flexible with family life and lets me take care of Reese when I need to. I’m at almost all of her doctors visits and tests and I’m the one that most often takes her to the ER. Reese McClain and I are regular visitors at our local children’s hospital ER and we know almost every nurse and doctor by sight and they know us. We have found that the medical side suits me. I can handle doctors and nurses and I’ve learned to speak the language. Elizabeth has excelled in keeping all of Reese’s therapies organized and fighting the bureaucracy to get more services. This has also worked well for our marriage and our mental health in dealing with all of Reese’s issues. We cannot recommend this strategy enough.

Our experience with Doctors have been amazing.They are saints, and they have blessed our family in so many ways. Yet doctors are not God. They are humans, they make mistakes, they don’t know everything, and they must be questioned. Reese has some amazing specialists that care for her and some of them have been with us from the beginning of this journey. A couple of her doctors are considered the best in their field and are nationally and internationally known. But through this journey we have had doctors who weren’t so great, we weren’t comfortable with, and we’ve had them replaced. This might sound like a tough thing to do but we will always do what’s best for our daughter. A doctors feelings and ego are none of my concern. I’m focused on Reese and her care, not a doctor’s pride. If you don’t feel comfortable with a doctor, find another one, even if you have to travel. Nothing is impossible when it comes to caring for your child.

During the cold and flu season we occasionally have to stay for a couple of  overnight visits at the children’s hospital so Reese can get her lungs cleared. It’s a process we’re familiar with but it’s not something we ever look forward too. When you are admitted to the hospital it’s important to learn the names of doctors and who ranks where. There is a pecking order in American hospitals for doctors and it goes something like this. Specialist doctors are the highest we will ever see. These are neurologists, pulmonologists, and cardiologists etc. If Reese is hospitalized and any of her specialists are consulted, they can call the shots. Most of the time we do not see these specialists and we only see what’s called the Attending Doctor. This is the doctor who is legally responsible for Reese’s care while in the hospital. The attending supervises resident doctors, med students, nurse practitioners and registered nurses. The attending is the one who writes all the orders for medicines and treatments and has the final say when you are discharged. The attending is the one can make things happen.

Back in 2012, Reese was on her 3rd visit to the hospital in less than 4 weeks. We had a bad experience in the ER and had been getting the run around for hours by different people as to what was going to happen with Reese’s care. I had to work that morning so my mom was staying with Reese and I had her put me on speaker phone with the attending doctor when she made her rounds. I was not happy and made my displeasure known. Over the course of the rest of that week, Reese was a top priority for a large team of doctors and the week ended with what’s called a care conference. This was 14 people made up of 8 doctors, 3 nurses, and 3 social workers who all got in a room with me to discuss keeping Reese out of the hospital. None of this happened without that attending doctor pushing for the care conference. She got things done and we are forever grateful for her that week.

After attending doctors there are residents. When the attending doc does rotations they bring a crowd with them. In this crowd is usually a nurse or two, medical students, and first, second, and third year residents. A resident is one who has received the title of doctor for finishing medical school but is now in the stages of medical training. You will see the med students and first year residents (who are sometimes called interns) more than the other doctors. Always ask when they are in the room who is what. Third year residents are just one rung below the attending doctor and they can also make things happen. They are a great resource because they are usually close by if you need them. Also, just like most things in life, it’s all about relationships. We’ve gone back to the hospital a couple of years later and our third year resident was a first year resident when she first saw Reese. She loved us and took great care of us. Getting to know the doctors, asking who they are and learning about them is invaluable to your child’s care while in the hospital. Write down names if you have to, and make the effort to get to know the hospital staff. You never know when that personal relationship might come in handy.

The backbone of any hospital is the nursing staff they are the people you have contact with the most throughout your stay in the hospital. I would say that about 98% of the time we have great experiences with nurses. They’re rockstars. But we have had that 2% who have a bad attitude, poor communication skills, or they just aren’t good at what they do. Nurses are the same as doctors, they’re saints and they are a blessing. Yet they sometimes are not up to the standards you hold for your child and it’s ok to ask for a different one. We’ve done this before and while it’s awkward, it has been necessary. Now granted we’re not picky, we’ve only asked twice out of the over 100 plus nurses we’ve had to be replaced. Both times were because of incompetence and not because of personality. You have to learn to deal with different personalities, but I will not compromise on my daughter’s care and you shouldn’t either. It’s a decision about what’s best for your child and you must get over everything else and focus on that.

Finally in this very long essay, I leave you with some quick tips we’ve learned. Not all might apply to your situation, but they’re what we’ve experience.

• be nice and be thankful. Kindness goes a long away with doctors and nurses.
• take breaks when you’re in the hospital. Go out and get a good meal, go home for a long nap. Do not wear yourself out by never leaving the hospital
• always question the nurses about what medicine they are about to administer to your child, no matter if it’s by IV or oral. Do not accept that they have the correct medicine the doctor ordered. If you have a concern, ask to see the Doctor again before the medicine is administered.
• If your child frequents the hospital often, make sure to keep good records of all visits. I actually scan Reese’s medical records once a year. I also take pictures of all of her medicines and put all pictures and scanned records in a program called Evernote. It has an app for every kind of smartphone and computer. Great resource

I could write even more about this topic but I hope I’ve helped this long overview. Being a parent of a medically fragile child is hard. The sacrifices you make and the journey you take are at times hard to swallow. It’s not easy to quarantine your child and home for a weeks at time and not venture out. It’s also not fun to make an ER visit for the 4th time in 7 days. Watching your child lie sick in a hospital bed is one of the most helpless times of your life. Yet God is there with you every step of the way. He has a very big story to tell and you and your child are part of that story. Stay faithful and give all the glory to God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.  – 2 Corinthians 4:16-18

This is a two part post, next week Elizabeth will write about navigating the world of therapies and early intervention. She’s one of the best at it and our precious Reese McClain is blessed to call Elizabeth her mommy.

From the Desk of Kyle

Today I had to take Reese McClain to Kosair Children’s Hospital for a quick outpatient test. It’s a routine one that is very familiar to us. In fact I have the routine memorized. You check in with the receptionist and wait for them to call back you up. They give you a digital signature pad and repeat the same thing every time….. initial here and here, sign here, relationship to the child here, and finally sign here. They ask if she has a latex allergy. Then you verify the child’s name and date of birth on the arm band. Then they place the band on Reese and another one my arm.

Now I have very hairy arms and it’s always a delicate operation to get the arm band on my arm without ripping out what feels like hundreds of hairs. About the time I put on my arm band, Reese was getting restless in my arms and we had waited a lot longer than normal. I was frustrated, I wanted to get home, beat rush hour traffic, and watch the USA play in the World Cup. I was in my work clothes and hot from the 90 degree day. Honestly, I just didn’t want to be at this children’s hospital for what feels like the 100th time.

Just then, a little boy with Downs Syndrome who couldn’t have been older than 5 years old, walked up to the nurse and wanted the same arm band Reese and I were wearing. His older brother was there for a medical reason and had an arm band but this little boy did not. The nurse asked his name and wrote it on the arm band and put it on his arm. He was so excited and had such an adorable smile that could light up a room. It was the tiniest gesture and the little boy acted like he had just been given the worlds largest pile of Legos. He got an armband just like his big brother and as far as he knows, this hospital just had a cool lobby with lots of toys to play with.

Sometimes God reminds me that the little things are so trivial in this world but he still uses them to show us of his glory. I almost cried watching that little boy play without a care in the world and with such an innocence that was so heart warming. The same armband I dread to put on every time we visit, is the same arm band that made him feel just like his big brother. As I watched him, I thanked God for all he has given us. I had all the joy around me….the little boy’s smiles, my daughter’s laugh, her laying on my shoulder, and we weren’t even at the hospital to be admitted! Yet I was looking inward instead of recognizing what’s important. Getting home to beat traffic, impatience with a slow hospital staff, wanting to see a soccer match, and just thinking only about myself. Now through the eyes of another special needs child not my own, I see just a brief few of my self centered ways.

It’s so easy to look inward and think my situation isn’t good. It’s also very easy to compare my situation to others and realize it’s not bad either. What’s not easy for me is to quit thinking about myself period. Our society is full of selfishness. We’re told over and over that we need to focus on ourselves with this drug, this drink, this place, this thing. Instead I should choose to be thankful and focus on what’s really important. Giving the glory to God and loving Jesus, my wife, my daughter, my friend, and my neighbor….not myself.

I’ll let you in on one secret though, I’ll still be selfish because I’m a sinner. I’m not perfect and no one else is either. It’s a Genesis 3 world we live in and the only answer is turn to Jesus, confess our sins, and accept him as our savior. Be humble and accept that I will fall short of the glory of God everyday, but it’s through the blood of his son that I will someday live free of sin in the kingdom of heaven.

Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves – Philippians 2:3

From the Desk of Kyle

I’d like to begin by thanking everyone for your prayers, phone calls, text messages, facebook messages and even tweets the past few weeks. We’re so blessed to have such a strong support community around our precious little girl. Reese McClain is doing great! We are off all antibiotics, we no longer are on breathing treatments, and are not using her vest at this time. She was given a 100%  all clear by her doctor and we cannot be more excited to have our little girl back to normal.

Reese McClain will turn 3 years old in July which is such a blessing to even think about. Our little girl is growing up and with her growth comes many challenges. While she crawls all over the house, she still does not raise to her feet to standing or even come close to attempting to walk. We pray those days are coming but we’re realistic in understanding we could be years away from her walking. She has as many therapies as we can get her into and she’s exhausted some days from all of her activity! Mommy and Daddy are determined our little girl will have every single opportunity we can afford.

As Reese McClain grows we’ve begun to see the looks. Special needs parents know all about the look. I’ve in fact given the look myself because sometimes there is no way around it. It’s the looks of “That child is “special”, something isn’t quite right….wonder what’s wrong?” Since Reese does not talk and she does not wave her hand, most people just think she is being shy. It’s then when she looks up at someone and gives them the biggest smile ever, that everyone delights in her response. At times though, you can see the questions people have, Reese has the stereotyping of her hands bent inward, she sometimes bounces around and waves her arms uncontrollably with excitement. She sometimes rolls her eyes back into her head and will stare at bright lights on the ceiling. It’s all normal to us but not normal for someone to see the first time.

The other night at a Japanese restaurant one of the hibachi cooks asked (after observing Reese for a good 20 minutes) if she was 6 months old and we said yes. Sometimes it’s just easier for us to say yes than to explain. Sometimes other people will ask my favorite “what are the terrible 2’s like? Is she a handful?”. It’s those questions that make us laugh because we honestly have no idea what the so called “terrible 2’s” are like. Reese McClain is a child who for 99% of the time is happy. When she does fuss it’s because she’s hungry or sleepy. We wouldn’t know what a temper tantrums looks like in our home. In some ways it’s a blessing, in other ways it’s just awkward.

Yesterday we were at Trader Joe’s and Reese was in the cart watching the man behind us in line. He was just a normal guy who we could tell was quite shy with Reese. He didn’t make faces really, he just smiled at her and he looked away. Reese thought this man was either a funny guy, or funny looking. She kept laughing at him so hard it was almost a cackle.. We laughed, he gave an awkward smile, and even the checkout girl was laughing. It’s times like all of these that we must remember that Reese is made in God’s image, not ours. We don’t know that man at Trader Joe’s story. He could have been having a good day or a bad day. We don’t know what God was using Reese for yesterday by smiling and laughing at him.  We do know this; the world will think of her as “special” but God looks at her as one of his children to care for, a blessing from him. She laughs, she smiles, she claps, and she loves on her Mommy and Daddy every single day. We rejoice in all of these things as we pray she gets stronger and stays healthy. God has a plan for Reese McClain and while it’s awkward sometimes and it’s funny other times, we couldn’t be more thankful for all he has given us through our precious daughter. Amen!

Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.   

Isaiah 40: 28-31

 Go Big Blue!!!!!!!!!!

From the desk of Kyle

In our last post, Elizabeth wrote about Reese fighting RSV. Unfortunately, this week it developed into a more severe respiratory infection and it required Reese to be hospitalized. When we took her Tuesday night, we knew immediately they would admit her. Her O2 levels were low enough while she was awake that we knew they would fall dangerously low when she slept. Thankfully, they admitted us to the same respiratory floor we have always visited at Kosair Children’s Hospital. We ended up having the same attending Doctor we’ve had from our previous visits and even the 3rd year resident we remembered from back when she was an intern just 2 years ago. While it’s no fun to visit a children’s hospital often enough that you are known by nurses and doctors, it’s nice to have comfort and fellowship with the medical staff.

She’s trying to break out! She wanted to crawl around so bad.

My little fighter.

On Wednesday, Reese McClain’s O2 levels were high enough that they took her off oxygen. She slept through the night with no need for O2 and we were discharged Thursday! God is good! The doctors think that because of her growing strength, she’s able to cough more of the fluid from her lungs and recover faster. In the past when we were admitted, we were there for at least a week! We pray that her growth and strength continues.  We are now home and have been told by the doctors to not travel with her for the next 7 to 10 days. She needs her respiratory vest and breathing treatments 4 times a day. She’s also on a 10 day antibiotic. While keeping her home for over a week is not fun, we know we must focus on her health and look forward to warm weather!

It’s thumper time! That’s what we call the respiratory vest.

Reading one of our favorite books, The Napping House.

Not only has the trials with Reese been our focus this week, we’ve also dealt with sorrow. This past Saturday my grandmother Lucille Nichols passed away at the age of 92. It was not unexpected, she had been in assisted living for almost 3 years and her health was failing. She was such a strong woman with a heavy influence on my life. After my mother, she was the women who helped raise me more than any other. She raised 4 strong Nichols sons of her own and had 7 grandchildren and 4 great grandchildren. She lived a long life full of work, fun, and her family. She loved her family more than anything and spoiled us grand children as much as she was allowed. We’ll miss our Granny but we take comfort in knowing that she was a believer. She is now with Jesus and there is no where else she would want to be.

Granny holding Reese on her 90th Birthday. Reese was only 6 months old.

God’s plan for us in this world is sometimes very hard to understand but his plans are always for his glory. That was proven once again this week in another passing of a very important woman in our lives. This past Tuesday morning as we were to prepare to bury my grandmother, my parents longtime next door neighbor Gay Hower passed away at the age of 76 from a brain tumor. I have lived next to Gay since I was born and she and her husband Tommy are like my second grandparents. Their house is next door to my parents and the path between our homes has been worn down so much after 25 years, that we finally had to put in a sidewalk. They are the type of neighbors that you can escape to as a teenager when mom and dad are being annoying or you just want someone to talk to. It’s the type of home where I talked politics, sports, current events, and laughed about anything and everything.

They hosted a wedding shower for Elizabeth and I when we were married and their 53 years of marriage was a great example to us of what a strong biblical marriage should be. Gay was one of the most sincere and thoughtful women I have ever known. I loved her for her sharp tongue, quick whit, and her ability to listen. There were many times when she gave advice I didn’t want to hear or tried to ignore, but she was never wrong. She loved my brother and I like we were one of her own and we will all look back on our time with her with very fond memories. I know she is in heaven singing praise and glory to God.

As the title of this post says, this was the week of trials and tests. As a believer in the God of the Bible, no where does it say in the Bible that Christian’s are supposed to have it easier than others. In fact, the Bible states quite the opposite. It refers to these trials and tests as a blessing. “Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the lord  has promised to those who love him. – James 1:12

This past week we have cried, we have stressed, we have worried, we have mourned, we have laughed, and we have prayed. My continued prayer is that I will tell everyone that God has a plan for his glory, and it will always be good.

“From him and through him and to him are all things. To him be the glory forever. Amen. – Romans 11:36

“It is not that God’s help and presence must still be proved in our life; rather God’s presence and help have been demonstrated for us in the life of Jesus Christ. It is in fact more important for us to know what God did to Israel, in God’s Son Jesus Christ, than to discover what God intends for us today. The fact that Jesus Christ died is more important than the fact that I will die. And the fact that Jesus Christ was raised from the dead is the sole ground of my hope that I, too, will be raised on the day of judgment” – Dietrich Bonhoeffer

“The question of why evil exists is not a theological question, for it assumes that it is possible to go behind the existence forced upon us as sinners. If we could answer it then we would not be sinners. We could make something else responsible…The theological question does not arise about the origin of evil but about the real overcoming of evil on the Cross; it ask for the forgiveness of guilt, for the reconciliation of the fallen world “ – Dietrich Bonhoeffer

Above are two of my favorite quotes from the famous Christian theologian Dietrich Bonhoeffer. I’m currently reading the amazing biography “Bonhoeffer: Pastor, Martyr, Prophet, Spy” by Eric Metaxas.  Bonhoeffer’s life is absolutely fascinating and his last days on this earth at the end of Nazi Germany are legendary chapters in WWII history. This book has got me thinking and reflecting…..

Today Reese had her tonsils and adnoids removed. Everything went great! Because of her medical issues, they’re keeping her under observation in the ICU for at least tonight. Staying tomorrow night is still currently up for debate and it will be decided in the morning with the doctors. I’m pulling the night shift tonight and it’s currently 2am. As I sit here reading the biography on Bonhoeffer, I couldn’t help but reflect the evil of this world that he confronted and all of us confront everyday. On each side of my daughter are two children that are less than 6 months old. One has a trach tube in her neck. The other is hooked up to more machines than I ever thought possible. In fact, the amount of machines is almost overwhelming to even look at. Every bed in this ICU is full and it stays like that constantly.

Anyone can walk into this ICU and ask God why? Even a strong believer in Christ could ask why. It’s THE question so many believers and non-believers have. Why is there suffering in this world. Why has God allowed it? The fall of this world began in Genisus Chapter 3. Sin entered this world and has consumed it. God has allowed it for reasons we don’t always understand. The one reason we do understand is Jesus. God showed us his glory by sending his only son to die on the cross for us. His ultimate grace lies in his son. Whoever should believe in him shall have eternal life.

Tomorrow or the next day my daughter will go home. Her scars will heal like they always do. She will go back to her therapies, her play time, and her yummy food. She will get many kisses from everyone and her smile will light up every room. Her future is unknown but the odds are, she will be back at this hospital again someday. We all at some point cry out why and God hears those cries. He sent his child to take our place on the cross. The evil of this world can be washed away by the blood of Christ. Do you know Jesus? Have you confessed your sins to him and and asked for forgiveness? Do you want to someday leave this evil world and live for eternity in heaven? Right now I’m surrounded by good and evil, life and death. God’s grace and love is what gets me through these times. I could focus on the evil and let it consume me or I can focus on Jesus. He really is the answer.

After Jesus said this, he looked toward heaven and prayed:

Wow, I just noticed we haven’t posted on this blog in over a month! How time flies when you’re having fun. Below is just a quick thanks to everyone and what is next in our journey with Reese. But first a recent picture of our adorable little girl right when she woke up from a nap. Her smile is infectious!

Is it that time of year or what? It seems like everyone is sick. My work looked like a ghost town a few weeks ago as everyone kept passing the same bug around. Also, for a few weeks, the flu was in a full blown outbreak and the ER waiting rooms looked like the line for Splash Mountain. All of this will make parents of medically fragile children sit on the edge of their seats. We worry about every sniffle, every warm forehead, and every single cough. We can’t stress enough how important it is to wash your hands and not come around Reese if you don’t feel well. Thankfully, everyone we know understands this and has been just as diligent as we parents are. Thank you to those who have told us they’re staying away because they’re sick or to not bring Reese to visit them. We understand and are so very grateful when someone tells us this. Thank you everyone for your help!

Now this week we have one last surgery for Reese. She has severe sleep apnea which causes all kinds of issues that she doesn’t need. The only way to remedy this for small children is to have her tonsils and adenoids removed. This surgery is scheduled for this coming Friday afternoon. Usually it’s an outpatient procedure for most children but our Princess Reese always likes to be different. Her doctor expects her to stay overnight in the hospital for one or two nights at the most. The surgery was delayed a few weeks because the surgeon wanted to consult with her other doctors and surgeons since Reese has specific medical issues that need to be adressed before they can proceed.This will of course not be as stressful as the open heart surgery. We’re still apprehensive as always but we haven’t been on pins and needles this time. Once your daughter has had her chest opened up and her heart stopped, all other surgeries seem minor. Yet we do realize that nothing is minor with Reese and we will always be in prayer for her. We ask for your prayers as we make another trip to Kosair Children’s Hospital. We pray for God’s understanding and comfort. We pray our little girl heals from this as quickly as she did her heart surgery. We are so very thankful everyone’s support and prayers!

 Romans 8:35-39

 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: 

 For your sake we face death all day long; we are considered as sheep to be slaughtered.” 

 No in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Jesus Christ our Lord.

This Christmas season has been one of the most original our family has ever had. For the first time in as long as either Elizabeth or I could remember, we did not have anything to do on Christmas day. Our family celebrations were done the Saturday before Christmas, and Christmas Eve. So Christmas Day was to be a relaxing celebration at home. In fact, Reese turned 17 months old Christmas Day! That morning she received her presents from Santa and the rest of the day was planned as a slow and relaxing one in front of the fire watching Christmas movies.

As we’ve learned from the last 10 months, our journey with Reese will always be unique and Christmas Day did not disappoint. Around 4pm that day Reese started crying like she was in pain. As we’ve discussed in this blog before, Reese does not cry. She can fuss at times when she’s hungry or tired, but otherwise she sheds no tears or cries out in any loud way. This time she did and she cried with such painful tears that hadn’t been seen since she had her heart surgery. We tried soothing her by walking or rocking but she kept crying and flexing her legs. We thought it could be a stomach problem since she had a stomach virus just a few days earlier and ended up at Kosair’s ER. We also thought she maybe had a Urinary Tract Infection (UTI). She’s had 2 before but they usually involve a fever which she didn’t have this time and she’s never cried like this. We decided to put her in the car and drive her around to see if she would settle. Reese absolutely LOVES riding in the car while starring out the window and just smiling and laughing. This time she kept crying and we knew this was different.

So where do you go on Christmas Day when your child is sick? Why to Kosair Children’s Hospital of course! This would make our 3rd visit in 6 weeks to the Kosair ER, which is surprisingly around average us. The last 2 times we went we knew what was wrong and what she needed to get well. This time we were worried more than normal. Seeing her cry like she did was awful and we’re so not used to it. She cried the entire trip to the hospital which is about 20 minutes. Then cried another hour or so after we first got there. So all told, 2 solid hours of hearing our princess uncontrollably cry was not fun for us or easy on our nerves.

Since we visit this ER quite frequently, the nurses know us and Reese by sight and even know Reese by name. The ER was very busy and in fact one nurse told us that Christmas Day is one of their busiest days of the year. They were taking kids back for triage then sending them back out to the waiting room to wait for a bed to open up so they could see the doctor. Thankfully, either because they knew us or most likely they just couldn’t stand seeing her cry, we got in a room immediately. After a couple of x-rays, and a catheter, they determined she had a severe UTI. They gave her 2 shots and sent us home on antibiotics. When the nurses came in to give her the shots, they said they would give them both at the same time in each of her her thighs. When they pulled back her leggings, they both commented on how she had perfect shot thighs! Basically that’s a cute way of saying she has chubby legs. It gave Elizabeth and I a good laugh. We now pinch her chubby legs and call them shots thighs.

We didn’t get home from the hospital till around 10pm. We were so hungry when we left the hospital, we tried to think of some place that would be open on Christmas and finally realized Chinese! So we got home and chowed down on Chinese food while Elizabeth’s mom came over and helped put Reese to bed. As I said earlier in this post, this Christmas was original and Reese made sure to make it an adventure. Reese is doing much better now and is a very happy little girl.

This was the first Christmas holiday since we learned of Reese’s diagnosis of MECP2 syndrome. Last year we were enjoying our little girl’s first Christmas, not knowing that this Christmas we would be looking back at the last year with such sadness, joy, and awe. We’re sad because our expectations for our daughter our very much different than just a year ago. Last year we dreamed of her crawling or running to the tree this Christmas. Now we just pray she one day may crawl or walk. We’re joyful because our daughter is with us and we’re so blessed with all God has given us this past year. We are in awe of God’s glory. He is the one true sovereign God who gave us the most precious gift in his son, our savior, Jesus. We all fall short of God’s glory every single day, but his grace through his son is what we can always depend on. It’s the greatest gift ever given. May we give him the glory in everything we do.

I leave this long blog post with some pictures of our family this Christmas season. Hope everyone reading this had a Merry Christmas and a blessed New Year. God is good.

I am what my wife, family, and even co-workers would say is a very laid back person. I get excited for vacations, UK basketball games, and eating or cooking barbecue. I stress over very little and I only get mad at left lane drivers (looking at you Indiana) and windows computers (please just get a Mac, your excuses are becoming annoying).

Ever since Reese came into our world, my stress still hasn’t jumped as one would think, but my worries are different. For years I have made fun of helicopter parents. You know, the ones who follow their child from room to room and are always within arms reach. They constantly worry over every tear, every cry, and every runny nose. They strap them to leashes when they’re out in public and won’t let them play anywhere or with anything that could possibly get the child hurt.

I have become the helicopter parent. At least from the worry and medical sense. I try to ask everyone who visits Reese if they’ve washed their hands, I check on her constantly while she sleeps, and I pray no one I come in contact with is carrying some super bug that could hurt my precious girl. Reese is medically fragile with a capital F. Sure, she’s gotten healthier and stronger the last 6 months. It’s easy to see how well she’s progressed and think everything is going to be fine. Many people love to tell Elizabeth and I this. Sometimes I even start to believe it.

Yet it only takes one look at a facebook group we belong to of parents who have children with her genetic disorder, to understand things might not ever be normal. Their are heartbreaking stories of the epilepsy, the hospital visits, and the many therapies it takes for our children to develop. Just last Friday, I received an update on a 5 year old boy who has the same genetic disorder of Reese who passed away. Just reading his story had me crying at my desk.

Last night Reese started getting fussy and had lots of mucus in her nose and we used our suction machine to help keep her clear. Our big worry is it getting into her lungs and pneumonia returning. We have suctioned more mucus out of her in the last 12 hours than we have in months. She’s very fussy but has no fever, yet we can tell she doesn’t feel well. This is where we had to make a decision, do we go to our regular AMAZING pediatrician or take her to emergency room? With this much mucus, we decided a trip to the ER was needed to make sure everything was ok. We’ve been down this road before and waited for a fever to come and when it finally does, it jumps quickly and without warning.

So off to Kosair Children’s Hospital we went. As I drove her there, I was reminded of a commercial we see in our area for Kosair. It’s on constantly and it’s of an elderly man who went to Kosair often when he was a little boy and grew up to be a doctor. He ends the commercial with “I’ll bet I’m one of the oldest Kosair kids around.” I’ve seen that commercial a dozen times and every time I’m reminded, I have a Kosair kid too. I never thought my life would be that way. Spending weeks at a time in a children’s hospital was so foreign to me. I’m a control freak and I have always hated hospitals. These days I walk into an ER I’m no longer intimidated by the machines, nurses, and doctors. Today I walked in and within 10 minutes of triage the nurse said, “Well you sure know your daughter’s details.” As I write about it now, I’m amazed at how God has humbled me. He’s reminded me that it’s not about me and I’m capable of way more than I ever thought.

Thankfully, our ER visit was a short one. Reese has an upper respiratory infection along with an ear infection. She got another x-ray and some suction at the hospital. We’re now home with antibiotics and lots of rest. We pray it doesn’t get worse and this infection passes. We pray for healing and put our trust in God’s plan. May his glory always be revealed in everything we do.

(Warning, before you proceed, please know that we do post pictures below of Reese after surgery. We’ve always thought of this blog as a way to help other parents who someday might go through something like this. Nothing can prepare you for seeing your child in this condition, but we feel this blog must be as transparent as possible in order to portray the most realistic journey we’re taking. Thanks)

Today was “The day of days” for us. We were told this day would happen back in May. Due to many different setbacks, it’s been postponed 2 different times but we finally got this heart surgery done. People have asked me many times the last few weeks how I was doing and how Elizabeth was doing. I think both of us just wanted to get it over with. I wasn’t nervous until they finally came to take her back. Elizabeth hugged her and kissed her, then I picked her up, got my kisses and literally handed her over to the anesthesiologist. I don’t think Elizabeth saw me but I had tears in my eyes. Handing your daughter over to a complete stranger so they can cut her open, stop her heart and lungs so they can fix a hole….it’s almost just too much to handle.

The hole in Reese’s heart was almost a half inch long and her heart isn’t much bigger than that! Surgery was the only option and needed to be done sooner rather than later. They took her back a little before 1pm and we waited quite a while before receiving our first update. Prep for this type of surgery takes over an hour, so we weren’t told till almost 2:30pm that they had begun. Both of our families were with us and we had quite a few visitors stop by for support. In fact we had 4 different churches send either a minister or chaplain to pray and talk with us. God is good!

The first cardiologist came to see us around 3:45 and let us know that everything went great, in his words “It was an A+”. We’re a big fan of his, we’ve had him since her first hospital visit and he has great disposition and always puts us at ease. He’s the doctor who reads her EKG and signs off on each one before they start the surgery and the one after they’re done and about to close her up. We breathed a huge sigh of relief but waited for the official word until after her surgeon arrived. He came by just 15 minutes later and pronounced the surgery a successful one we all celebrated in our own quiet way. It was such a relief and I knew God had answered some serious prayers.

We now had to wait another 2 hours before we got to see her. They took her into the ICU where she’ll be for the next 24 to 48 hours and Elizabeth and I were finally allowed back. I had been told by another heart surgeon, that nothing can prepare you for what you see when you go back to the ICU. Our daughter has spent almost 6 weeks of her life in a hospital. We’ve seen almost anything they could throw at us as far as machines, cords, beeps, lights, etc. Then we walked into this.

As you can see, it wasn’t pretty. She’s a little fighter and by 8pm, that ventilator was out of her mouth! This was one of the bigger concern for doctors due to her chronic lung disease. We had been warned that she might have to have it in overnight or even longer than 24 hours. Instead, just 4 hours after her surgery, she had her eyes open and was breathing on her own. Praise the lord!

So now we spend the next 24 hours getting each and every line or wire running into her body removed one by one. If they all come off tomorrow and things are looking good, then we move into a regular room. If it takes a little while longer to remove each one, then it will be Friday before we’re out of the ICU. She will be here another 4 to 8 days depending on her recovery situation. Our main concern is avoiding infections and getting her pain down to a tolerable level.

For those who’ve asked, we welcome any and all visitors. We’ve learned from our past hospital visits to take it easy, take breaks, go home for rest and don’t wear ourselves out staying at the hospital 24/7. We have a great support system with our family and friends and will never able to thank you all enough for your help. Along with us, the grandmothers will sit with her and so will friends. Tonight is my night to stay with princess and Mommy pulls tomorrow night’s shift.

Once again we are so thankful for everyone’s amazing prayers, texts, phone calls, FB posts, tweets, and visits. Someone even managed to sneak in a Paul’s Fruit Market gift basket! That person knows who they are and we are so thankful. We of course will continure to update this blog, Facebook, and you can even find me on twitter for any up to the minute updates @unclekyle

We thank everyone but most of all we thank our Lord and Savior Jesus Christ. Without him, we wouldn’t even be able to understand why all of this has happened and how to handle it. If you don’t know Jesus, ask Elizabeth and I about him sometime. He loves you just as much as he loves our precious Reese. Accept him as your savior and your life will change forever.

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! 

2 Corinthians 5:17

Just a quick update. Yesterday Reese was released from the hospital, so it was only a one night stay for observation. They wanted to avoid dehydration and aspiration of her lungs. So far, her lungs are clear and she’s eating well. They sent her home on a strong 3 day regiment of steroids. She’s been on these steroids before and when she is, watch out! She has super energy, she grows more, and she eats so much we can barely keep her full. Reese has almost always slept through the night, but when she’s on steroids, she wakes up in the middle of the night for another bottle. Thankfully, we’re only on the steroids for a few days.