All aboard the therapy train (choo choo)

In case you were wondering while reading my last post why we are gunning for 10 therapy appts. a week…it’s b/c our insurance co. approved 75 therapies PER discipline between now and Sept. 20, 2014!  And I just confirmed with the rehab place that they’ve spoken to our insurance company and that we are good to go. So we are going gangbusters for our daughter. We’ll say yes to any possible time slot (like 7:30 a.m., which is practically impossible if you know us, but we will make it possible).

Thank you guys so much for your prayers for this to come through, they have definitely worked.  I know the next four months will be intense…this is an intense season and we pray that it pays off for Reagan. We also pray that after September 20 our insurance co. continues to approve the needed therapy for Reagan. Hopefully in four months, Reagan will have made a lot of progress. I’m praying for crawling and walking and talking and eating…more of everything.

 

Overcoming unbelief

There’s a picture on our fridge of me at age five with my new kitten, Frisky. I look at that photo pretty often, as it’s on the fridge, and I can’t help but think, “My parents were lucky that I was healthy. ALL parents who have healthy kids, that do normal things…they are so lucky, and they don’t even know.”

AM 5 years
Pink is my favorite, therefore, it’s Reagan’s favorite.

It’s something that I believe many people take for granted. To have a healthy child is just expected. No one anticipates scheduling for AND going to ten (yes now ten) therapy appointments a week, which is what Rob and I do. After Reagan’s speech evaluation, we added an additional three therapy appointments…we also added another physical therapy, and are working to add another occupational therapy to the mix.

I don’t know of anyone who can understand the exhaustion Rob and I feel on a daily basis. Here’s a glimpse of our day:

  • 5 a.m. – Sometimes Reagan wakes up btw. 5 a.m. – 6 a.m.
  • 6:30 a.m. – when we actually get Reagan. We give her six medications through her G-tube at this time.
  • 6:45 a.m. – get breakfast ready
  • 7 a.m. feed her through G-tube and try food by mouth. Also try to have an eye patch on for 30 minutes
  • Depending on the day, we go to therapy in the morning
  • 7:30-9:30 play or therapy appts
  • 9:30/10 a.m. – Nap for 30 minutes
  • 11:30 – prep lunch
  • 12:00 three medications, lunch in the G-tube and trying food by mouth
  • 1-4 play or go to therapy appts
  • 3:30 p.m. Nap for 45 minutes (her medications don’t let her sleep very well…many days we’ve had a TOTAL of 45 minute naps btw the two naps, and as much as an hour and half). While Reagan naps, we clean, work, respond to emails/phone calls. (Go to the bathroom, maybe?)
  • 4:30 Prep dinner
  • 5:00 Feed Reagan Dinner
  • 5:30 play/go on a walk
  • 6:00 bath
  • 6:30 four medications
  • 7/7:30 bedtime
  • 9:30 p.m. prep medication for morning, make formula for next day, get ready for 10 p.m. feeding
  • 10:00 p.m. feed Reagan via G-tube in rocking chair. Rob reads the Bible…this is our favorite part of the day, she’s peacefully sleeping in my arms, Rob is reading the Bible, she’s not having any uncontrollable movements
  • 10:45 p.m. we go to bed, Reagan wakes up before our alarm, and we start that all over again

I’m out of breath.

This is every single day. It does not include Dr. appts or other appts, and I couldn’t even tell you what days and times we go to therapy…some days it’s one time, some days it’s three, some are back to back, some are two hours apart. It doesn’t include things that get added in like bringing Bauer in the car this morning at 7:30 a.m. (which completely delighted Reagan) to take him to the groomer on our way to therapy. It doesn’t include going to the grocery store, which I can’t remember when that last was. We normally will do quick trips while Reagan is sleeping in the car and Rob drives the parking lot. And I glare at everyone as if to say, “move out of my way, can’t you see I’m on a mission and I literally have no time in my schedule to stand behind you while you check the egg cartons.”

That schedule doesn’t include when I actually have time to sit down and write…or show property, have closings, list property, etc. Which I continue to do. In fact, I have a lovely 3/2.5 2800+ sq. ft. home that I just listed in the guard gated community of Seminole Woods, priced at $539K! Click here to check it out! Rob and I make our work schedules work too…we just figure it out.

I’d consider the parents who run to Target for fun lucky. I did that today with my mom…BIG outing and everything is quick and with a purpose. We needed tennis shoes for Reagan, I purchased three pairs. Let it also be known, that I loathe tennis shoes and I would rather Reagan wear cute sandals and flip flops, she’s actually been barefoot for all 15 months of her life. We are in Florida people. Anyway, I got her a pair that fits her now, and two pairs that are one size larger, b/c she’s been fitted for leg braces. Yes. Leg braces. And the physical therapist says we’ll need a bigger shoe size so the brace can fit inside the shoe and also give her feet room.

Let’s also talk about medication, shall we? Reagan is on mind altering medication. First of all, if you have seizures, in order to stop them, all seizure medication is mind altering to block certain receptors from doing certain things (bear with me folks, I got my degree in Communications…not science. I went as high as Biology in high school, and took ZERO science in college. I don’t do science…except, for my daughter). Second of all, Reagan has a movement disorder, they believe it to be Chorea. Chorea is the greek word for dance, think “choreography” I guess that’s how they came up with the name for this disorder.

Medications are a dice roll. They may work, they may not. There is one specific medication for Chorea, the side effects are scary. Our neurologist emailed me with these side effects: Somnolence, insomnia, fatigue, irritability, ataxia, movement disorder, appetite decrease are common. // Mood disorder, neuroleptic malignant syndrome and tardive dyskinesia are serious ones. Will also have to check EKG prior to starting it.  But let’s be honest, any mind altering drug, from medication for ADHD or anti-depressants all have terrible side effects listed. I only notice it now, b/c I’m giving it to my child.

Don’t feel bad if you have to highlight a term and google it or have your phone define it. That’s what I did this morning when I read it. His email was the first thing I read this morning…I should have started with the Jesus Calling Devotional, not the email. It put me in a foul mood at 6 a.m., combined with the fact that Reagan was already bright eyed and bushy tailed and we needed to get out the door at 7:30 a.m.

There’s a lot of overwhelming things to consider in our care for Reagan. My parents were lucky. I was healthy. Rob was healthy too. When I look at that picture of myself with my cat Frisky on the fridge, and I look at it multiple times a day…again, I think, “Who else is having to consider these factors and make these decisions and weigh the pros/cons of something so serious in their child?” I’d like my most pressing issue to be, what school will she go to. And now I wonder, is school even an option down the road? I can’t think that far ahead, b/c many things can change. There is no sense in worrying about the future…planning seems foolish.

I thank GOD that I have an amazing husband who makes these decisions with me, and who is involved in EVERY facet of every decision. Thank GOD we communicate about every thought that pops into our mind. And thank GOD my mom and Rob’s sister live here locally. Their presence and company and love for Reagan, and for us, makes me feel safe, accepted, loved, encouraged and blessed. And thank GOD for our amazing support group of friends. We have so many wonderful friends who I feel are on this journey with us. I didn’t choose this road, but we do have great travel companions.

As we make it through the new testament, we are now reading Mark…this was the story last night:


Mark 9:17-29

17 One of the men in the crowd spoke up and said, “Teacher, I brought my son so you could heal him. He is possessed by an evil spirit that won’t let him talk.18 And whenever this spirit seizes him, it throws him violently to the ground. Then he foams at the mouth and grinds his teeth and becomes rigid. So I asked your disciples to cast out the evil spirit, but they couldn’t do it.”

19 Jesus said to them,“You faithless people! How long must I be with you? How long must I put up with you? Bring the boy to me.”

20 So they brought the boy. But when the evil spirit saw Jesus, it threw the child into a violent convulsion, and he fell to the ground, writhing and foaming at the mouth.

21 “How long has this been happening?” Jesus asked the boy’s father.

He replied, “Since he was a little boy. 22 The spirit often throws him into the fire or into water, trying to kill him. Have mercy on us and help us, if you can.”

23 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”

24 The father instantly cried out, “I do believe, but help me overcome my unbelief!”

25 When Jesus saw that the crowd of onlookers was growing, he rebuked the evil spirit. “Listen, you spirit that makes this boy unable to hear and speak,” he said. “I command you to come out of this child and never enter him again!”

26 Then the spirit screamed and threw the boy into another violent convulsion and left him. The boy appeared to be dead. A murmur ran through the crowd as people said, “He’s dead.” 27 But Jesus took him by the hand and helped him to his feet, and he stood up.

28 Afterward, when Jesus was alone in the house with his disciples, they asked him, “Why couldn’t we cast out that evil spirit?”

29 Jesus replied, “This kind can be cast out only by prayer.”


In the car this morning, Rob and I agreed that we both relate to that Father. I imagine he was at his wits end with his son. He’s been like that since a child, and he was probably pulling his hair out…nothing was working, not his prayers, they seemed peppered with doubt. No local Dr.’s. or priests could heal the boy. Anyone who tried to help before had failed. Jesus’ disciples failed and this father probably believed that no one and nothing would ever work. We can relate to that.

I feel like this is our conversation with God, which is likely how it went 2,000 years ago:

Lord! Can you please heal my child?!

CAN I? Of COURSE I CAN!

Then please do it! We believe you can! Help our unbelief!!

After I read that email from our Neurologist this morning, I prayed for God to heal Reagan…”God you don’t have any side effects, you can touch her and her body can be made whole. If you were walking this earth, even a graze against your garment would heal her. Your power is immense, it is larger and brighter than any man can comprehend. You have the cure for every ailment in humanity. Every single one. No side effects. Just healing. Please heal Reagan, help us believe.”

We pray every night for healing…for God to just graze Reagan’s crib…his presence alone would heal her. He could touch her head and her brain damage, her genetic disorder, her ability to sit, stand, walk, crawl, talk, eat…they could all function. With one touch. Actually, he could just say the words “be healed, child” and she would be well. Jesus, please…heal our child. Help us overcome any unbelief we have.

Peter walked on water

I had heard this song before everything happened…it’s got more depth and meaning to me now. I’d recommend playing it while reading the post.


I know Jesus walked on water, and I don’t want to minimize that, but he’s God…he can do that. However Peter, he’s like me…and he walked on the water too.

Matthew 14:22-33

Meanwhile, the disciples were in trouble far away from land, for a strong wind had risen, and they were fighting heavy waves. About three o’clock in the morning Jesus came toward them, walking on the water. When the disciples saw him walking on the water, they were terrified. In their fear, they cried out, “It’s a ghost!”

But Jesus spoke to them at once. “Don’t be afraid,” he said. “Take courage. I am here!

Then Peter called to him, “Lord, if it’s really you, tell me to come to you, walking on the water.”

“Yes, come,” Jesus said.

So Peter went over the side of the boat and walked on the water toward Jesus. But when he saw the strong wind and the waves, he was terrified and began to sink. “Save me, Lord!” he shouted.

Jesus immediately reached out and grabbed him. “You have so little faith,Jesus said. “Why did you doubt me?”

I love how Jesus tells Peter he has such little faith…he stepped out of the boat onto the water and walked! But as soon as he took his eyes of Jesus, he got scared. He looked down and saw the waves, he realized how windy it was and that he was in the middle of major storm, not on a boat, not in a life raft, on his feet.

Mark 11:22-24

Then Jesus said to the disciples, “Have faith in God. I tell you the truth, you can say to this mountain, ‘May you be lifted up and thrown into the sea,’ and it will happen. But you must really believe it will happen and have no doubt in your heart. I tell you, you can pray for anything, and if you believe that you’ve received it, it will be yours.

God can heal Reagan. I believe it. But do I think it will really happen? How do you get to that point? I know this happened to Reagan b/c it was God’s plan all along. I know that it was his plan. I’ve replayed all the months of decisions before her metabolic crisis and I only heard one thing from God when I do that: “Trust my plan. Trust my plan. Trust my plan.”

Is it his plan for her to be healed this side of Heaven? I don’t know. Should I still believe it CAN happen this side of Heaven AND pray for it? Yes. That is a crazy place for my mind to settle. It requires a lot of trust. The thoughts themselves seem to conflict another.

When I became a Christian in college, one of the prayers I had and continue to have, is that God would never let me go. Always keep me close. We are all prone to wander toward earthly desires…success, money, a happy, easy life. Rob and I discussed when you have success in this life, you can start to think it’s your doing. Everything belongs to God, our businesses, Reagan…they are God’s. I thought infertility is what God wanted us to go through to keep us close to him…even though I would get so mad at him for making us go through that while all our friends got pregnant. Then I thought, GA-1 is what he was using for us to lean on him. I was mad, but I leaned on God more than ever. But now…now, I think this is the catalyst that has sealed me to relying and trusting on God for every moment. At this point, I’m just living on water and I HAVE to keep my eyes on Jesus or I will sink so fast.

When our every day catastrophes happen, I fall fast, the tears are hot and I can not see past the moment at hand. Everything at that moment, to me, is the worst thing that’s ever happened. Without getting into too much detail our every day catastrophes include most diaper changes equaling outfit changes (or baths), which is fun when you’re late for an appt. or doing it all in the back of the SUV.  A lot of formula messes in the high chair, the car seat…or that time Reagan’s g-tube got a pinhole leak and Rob had to cut it and re-attach it so we didn’t have to go to the hospital to get it fixed. Things like this have happened just about every single day. Intermix that with the fact that our normal includes waking her up to feed her at 10 p.m., waking up at 6:30 a.m. to give her six medications, and every day I WISH so bad that she could follow behind me on her feet and walk and chase me…we are confined to sitting in a chair, laying on the floor…but she’s rolling a lot so I am thankful for that. It’s just not what I ever thought would happen when we finally had a baby.

And there you have it…in that one paragraph, my eyes were removed from Jesus…and I got sad, worried, fearful, etc. I sank. it took me two minutes. Satan is slick like that, before you know it, you are having a pity party. Believe me, I feel like I have every right to have a pity party, but I hate pity parties…they suck.

When I listen to certain songs and sing them over and over here’s what I’m reminded of…God can heal my heart and open my eyes to the things unseen and show me how to love like he loves me. Everything I have belongs to God. One day I will walk from earth, into eternity and the path I take matters. I will call upon God’s name…and keep my eyes above the waves. When Oceans rise I will rest in God’s embrace…b/c I belong to him. That’s where I’m choosing to live.

Rob and I think the “comical” part of that story in Matthew is Jesus saying Peter has so little faith…he was walking on water, he totally had faith, it was just short lived. The real life application is that Peter knew he was falling, knew he lost faith and sight of Jesus and he recognized that he needed help. He also knew who could save him and he called out to Jesus. And Jesus immediately pulled him out. Jesus was right there. God never forsakes us…he’s always right there.

Clay

I seriously love my daughter. She’s a total rockstar. She is rocking therapy, trying to sit up more and more, rolling over, sleeping on her stomach, playing while on her belly like it’s no big deal and she’s eating food (not a ton, but a few tablespoons for breakfast, lunch and dinner).

Unconditional love. I learn what that really means every day. Reagan has taught both Rob and I what it means.

Most parents say they possess that level of love, but they don’t always. You only know if you possess it when you’re tested. When times get tough, people (not just parents) throw in the towel, walk away, call it quits. I’ve witnessed it. I’ve watched adults say “it’s too difficult, I can’t deal,” and walk away from their kids, their marriage, their friends, their job, etc. Believe me, there were times I questioned my Mom moxie. I didn’t know if I could take this task on, wake up another day and do the whole routine again, but it’s the task I was given from above and I am not going to quit on my daughter.

Asking “why” happens less and less, it’s still there, and I still ask it, but there is no answering that question. I can’t go back. The questions we ask now are, where to? What next? How can we___? (fill in the blank).

The other night Rob and I watched Reagan on the monitor and we just gushed over her.

Rob: I love her!

Me: Me too. I sometimes forget that she has GA-1, b/c now that she’s gone through a metabolic crisis, the effects of that seem to trump the GA-1.

Rob: I agree. But I wouldn’t change anything, b/c she’s still Reagan and she’s ours.

We discussed that with GA-1, you never know what the life expectancy will be, and it can vary greatly based on whether or not you have a crisis. She’s had a crisis. We are trying to help her overcome all her new hurdles, but she may have lasting effects. We don’t know. And it could happen again. That’s where fear can creep in. Not many people have to wonder if their child will make it out Ok from having a fever, a cold or a virus…

While Satan would love it for us to go into a downward spiral of fear, we just can’t live there permanently. We are human, fear will creep in, but I’m not going to make a tent at fear’s doorstep. God tells you not to be afraid, he’s conquered everything. He asks for complete trust and reliance. It doesn’t make earthly, human sense to not worry about the future in an age where “prior planning prevents poor performance.” That’s a lie by the way…in case you didn’t notice, we planned the heck out of everything for Reagan. Ultimately, God has the final say so.

Who in the world do you think you are to second-guess God? Do you for one moment suppose any of us knows enough to call God into question? Clay doesn’t talk back to the fingers that mold it, saying, “Why did you shape me like this?” Isn’t it obvious that a potter has a perfect right to shape one lump of clay into a vase for holding flowers and another into a pot for cooking beans? If God needs one style of pottery especially designed to show his angry displeasure and another style carefully crafted to show his glorious goodness, isn’t that all right?
– Romans 9:20-22

I’m currently obsessed with a new song by Francesca Battistelli called “Write Your Story.”

Part of the lyrics go like this:

I’m an empty page
I’m an open book
Write Your story on my heart
Come on and make Your mark

Author of my hope
Maker of the stars
Let me be Your work of art
Won’t You write Your story on my heart

As I was listening to that today, I thought that in order for God to write his story on my heart, my heart needs to be open, needs to be moldable…it needs to be like clay. It can’t be hard, it can’t be cold…it has to be receiving to the hands that are making it into something new and something beautiful. It has to be accepting of God’s plan, welcoming even.

The lyrics continue:

My life
I know it’s never really been mine
So do with it whatever You like
I don’t know what Your plan is
But I know it’s good, yeah

As I was visiting with my amazing friend Karen today, who flew in from Dallas and made it a point to see me, I told her that this song is speaking to me. My story, what God is doing in my life…I might not see the greatest benefit from it. I might have to go through all this crap for it to impact someone more than me. But I KNOW God is using it for something bigger than just the three of us. I am really encouraged to hear how our story encourages others. But honestly that’s hard…I just want to have fun and have things be easier. I see other kids Reagan’s age picking things up, walking, using their fine motor skills and it’s cute and it makes me wish that for Reagan and for us. Fine motor skills are not Reagan’s forte at the moment; banging two things together, a once enjoyable thing for her to do, is now difficult. I wish for and pray for a prettier road to travel, a lot.

Karen and Reagan <3
Karen and Reagan
yay for Karen!

Karen wisely said, “God didn’t do this to Reagan to make your lives hell,” even though I sometimes feel like we are grazing along hell’s brimstone some days, God is holding us up and out of that fire. Going through this makes me realize how fragile life is, how really incapable we are as humans and how in order to really see God and get through just ONE day, I need Jesus propping me up with his arms.

If all God did for me was send his son Jesus to die, so that I don’t have to have one pinky toe in hell, wouldn’t that be enough? Isn’t that more than enough for the creator of the universe to do for me, for everyone? And yes, that’s the big picture and in the grand scheme of life and eternity, our story is just a tiny stretch of road and this won’t be our life forever.

For now, we are simply enjoying Reagan and who she is. She’s Reagan, a beaming ray of light. She lights up a room and God is using her to transform us and he’s using her to do things we don’t even know about. I am proud of her and proud to call her my daughter, and so is Rob. We are blessed b/c she’s here with us. Not all parents can say that about children that have gone through a traumatic event. But God never fails…he never has, and he’s not going to start with us.

One month

Yesterday was one month since Reagan had her metabolic crisis.

photo (15)

One month.

 

photo (16)

And it’s been two weeks since we’ve been doing this on our own. Seems like a lifetime. I can’t believe how long those two weeks have felt.  The farther we get away from April 8, 2014, the further and further we get away from who she was and we continue to learn about who she is.

She’s awesome. She’s determined. She’s a fighter. She’s a warrior. She’s gone through more difficulty in one month than I have in my entire life…than most people ever will go through. And through it all, she’s still sweet. She’s kind. She likes to smile. She’s curious. She likes to learn. She’s still chatty.

I’ve been pretty open sharing our journey on this blog. But as I look back on the past month, there were definitely some dark times and thoughts I had that I’d rather not revisit. I’d be lying if I said there weren’t days I didn’t want to go on, days I wish I could turn back the clock, times I blamed myself, blamed God and cursed God. And when I didn’t think there was any other way I could feel, God’s presence would wash over me and I felt peace, patience, acceptance, love, thankfulness and happiness, I hope that one day I will be completely content in my circumstances. That’s very hard…I don’t know many people who are always content.

I’ve learned by now to be quite content whatever my circumstances. I’m just as happy with little as with much, with much as with little. I’ve found the recipe for being happy whether full or hungry, hands full or hands empty. Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am. – Philippians 4:10-11 (The Message)

The truth? I was always a little uncomfortable around people with special needs or disabilities. I don’t know why. I would always smile, but internally I thought: “Was that an awkward smile? Did I look them in the eyes too long? Am I’m staring? Should I say something? How do they feel? What’s it like to be on the receiving end of endless questionable stares and looks of “normal” people? Can they tell I’m uncomfortable? I hope not…I hope I’m not making them uncomfortable. What do they want?”

Do you know what they want? To feel accepted. That’s what I want for my daughter. I don’t want people to feel uncomfortable around her. When friends and family have come to bring us meals these past two weeks (thank you by the way…that has helped immensely) we invite them in, talk with them about her condition, about some of her involuntary movements. We let them know, she’s not just fidgety, that’s her moving involuntarily b/c of her movement disorder, which is a result of the brain damage she suffered. Get to know our daughter, become comfortable with her special needs…ask us questions (although sometimes we might get tired of answering them) we definitely want you to be interested.

These past two weeks have also started our insanely busy therapy sessions. So far we go six times a week across four days, at all different times. Honestly, an hour of physical, occupational and feeding therapy every week is not enough (did I mention we will also be doing speech therapy, just waiting on that evaluation).

I mentioned on our Fundly page that our insurance only covers thirty sessions. Florida’s Early Steps program may pick up the slack, but in my conversations with our coordinator, it was unclear what they would allow, what would be covered and who could provide those services. We currently go to therapy as an outpatient service, but we feel Reagan would not only benefit from that environment, but also therapy within our home. Early Steps didn’t make me comfortable that both of those would be an option, it seemed to be one or the other. I feel like I need to put my battle gear on and get ready to fight for what my daughter needs, and what I think is best. If someone else wants to tell me that Reagan only needs half the therapies, or less than what my motherly intuition knows she needs, we will fill in those gaps for Reagan. We will provide her with the best, her future outcome depends on us to do that. And that’s where our Fundly page comes in, we’ve also provided a sidebar on our new blog to donate.

There is no way for us to account for the unknown costs, but we do have known expenses in caring for Reagan which we have detailed. If you feel led to give, in any amount, please do so. Every dollar goes toward caring for Reagan and providing her the very best.

Ok, that’s enough donation talk.

Rob and I have started to create new routines and normalcy in our life. Those are hard to figure out and we have to be intentional about our parenting, even more so than before.

We have to feed Reagan at 10 pm every night due to her metabolic condition, for the first week and a half, we hooked up the feeding tube in Reagan’s bed while she was sleeping, which worked great before she was rolling over. Now she rolls over (hallelujah for Reagan rolling!) the only problem with that was her feeding tube would get a kink and thirty minutes later when Rob went in, she would be laying in wet clothes, wet sheets, and a bed soaked in formula. Changing the sheets, changing Reagan, getting the food started again and doing that whole process over again would take another hour, and we were beyond exhausted, so Rob came up with a better plan.

Now when we feed Reagan, we wake her up, I hold her and Rob reads the Psalms out loud. This is a much better plan, and our attitudes have improved. God’s word is active, powerful and sharper than any sword. We are speaking the most powerful words over our daughter and God can use our speaking over her with his words to heal her.

You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I’d even lived one day.
Psalm 139:15-16

God wove Reagan together. He knew that April 7th would be our last normal day and bedtime routine, and that on April 8 her body would fail her. He knew everything would change. But I know that God knows how to re-weave. He can take tattered yarn and mend it. A broken body and heal it. He can take someone who is doubting and angry into one who hopes in the one who can heal. I pray God can turn this mess into good, and I know he can.

Can the Sun PLEASE Come Out?

It is really hard to look at “before” photos of Reagan. She was holding her head up when we held her at the three-month photos.

Reagan and Daddy at 3 mo.
Reagan and Daddy at three months

She was sitting up on her own at her seven-month pictures.

Reagan sitting at seven months

Reagan at seven months
Reagan at seven months

She was walking with assistance at 11 months.

KW1_5936_i

And now it seems like we are so far away from that.

Today Rob and I went to Target…we took the stroller, b/c Reagan can’t sit in the cart. She would flop over to one side, or maybe her head would loose control for a moment and fling backwards. I watched so many kids unknowingly help their parents get them into a cart. How? Just with muscle tone and control.  Imagine putting your two-month old into the cart like you would your 12-month old…and now you know what it’s like for us.

We continued our venture out on the town by going to Panera. We ate food; Reagan sat in her stroller and was fed via the G-tube. The feeding therapist said to still make it an event when Reagan eats…and that’s never changed. We eat breakfast when she does, and we still try to make it a social experience for her, but of course, it’s not the same. She looks at us eat and you can tell she wants to do that too. We give her a couple bites of baby food, but it’s difficult for her. Today we put a bunch of puffs on her tray, and watched as she would pick them up, and then miss her mouth. Her coordination is off. Is it her eyes? Her brain? Her movement disorder? I don’t know…pick one. Pick all three. My heart aches for her. (It aches for us). She just kept trying and trying and trying, She is so determined…probably 50 puffs were put on her tray, and she got one or two in her mouth. Bauer got the rest.

Every day is hard. No day is easy. Some times are fun, most times are challenging. I really hope we aren’t destined to be in this valley forever. It can’t storm forever, right? The sun has to come out…that’s how things grow, rain…and sun. I really want the sun to come out.