This past weekend Rob and I decided to do things we normally would do. But we like to start our weekends with a bang…the kind that makes you wonder if emergency surgery is in the future. Saturday morning started off great, until about 8:30 a.m. when I went to pull Reagan out of her high chair and her G-tube got caught. I almost ripped it out of her stomach. Sheer terror screams and panicking ensued. I called her genetics Dr. b/c she’s the only one I have on speed dial and she always picks up. I think I caught her before her morning coffee, and I couldn’t put two sentences together so through tears and non-sequential phrases I handed the phone to Rob.
The other week at lunch, I asked Rob, “Do you think you’re level headed?”
Rob: Yes, why.
Me: I agree…do you think I am?
Rob: Depends…why are you asking.
Me: Just thinking about what we would do if Reagan had a seizure, how we would handle it.
All that to say, we sort of discussed what we would do in an emergency situation and our roles had loosely been defined. I’m not the person who needs to explain things to people, or READ things on emergency seizure medication. When stuff hits the fan, the level headed guy needs to describe what happened and then dictate the plan to me.
Rob told our Dr. what happened…
Dr: “Did the tube come out?”
Dr.: “Clean it with water only, give her tylenol, put new dressing on it and try to calm her down. Then call the GI Dr. and let them know what happened and see if they want you to do anything different. Everything should be fine…kids pull on the tubes all the time, sometimes they come out, it can be a common thing.”
What a terrible thing to be common!
I cried so much that day b/c I thought she could have died…I mean, I didn’t know if having it pulled that hard could have moved her organs around or done damage to her insides. The entire scene replayed in my mind all day and I would cringe each time I would remember her stomach getting cinched. From the outside when it was pulled, I saw her stomach cinch. Ughhh…I would NEVER, ever choose to be in the medical field.
So after dealing with the G-tube catastrophe, I headed off to list a new townhome (super cute by the way, click here to view). Again, we are fighting for normal. Rob has gone to work over the past week…and I sell houses for a living. I meet with people…that’s not going to stop. It was put on hold for a few weeks, but being a Realtor is part of who I am. It will always come second to my family, but I will continue to be a Realtor, after a wife and mother.
Rob and I decided to head to Lukas nursery when I got back and we picked up a little plant to climb up the pole of our bird house feeder that Rob made. While at Lukas, I ran into a former co-worker…it was like God planted him right there to give us a pep talk, it was really encouraging to run into someone and know that God put him there…that God was like, “Hey Rob and AM…here’s a word from me, from a guy you haven’t seen in over a year. I’m in control…and I know what you need to hear, and I can use anyone to tell you.”
A lot of you think we are strong…and that our faith is strong. I can tell you that it’s being strengthened but we often…often feel weak. Many tears have to flow before blogs of strength can be written, please know that.
Sunday we went to the mall…that’s about as normal and American as you can get. We walked. We shopped a little. When we got out of the car I saw a little girl bouncing from the parking lot holding her mom’s hand and I just got sad. “That’s what I wanted to do…will I get to do that? Will Reagan be bouncing into the mall with me when she’s three?” A lot of things that I wanted to do and dreamed about…like shopping with my little girl, seem to be in question. And I get that there are things that are more important in life than shopping with my daughter, I get that you might not consider it a big dream, but it was my dream and it still is. I shopped with my mom and grama, and I have great memories from it. It’s a mother/daughter bonding thing. Maybe at the heart of this dream, what I really want is to connect with my daughter and bond with her over shared interests, and that’s not a small dream, it’s big.
As we fight for normalcy, we are working on skills that Reagan has to re-learn. The girl has grit…she has determination and watching her drives Rob and I to be obedient in what God has called us to in caring for her. Every single day…every single day she has done something new. When I wake up in the morning, I think, “she probably won’t do something new today,” and then of course, she does. The day she rolled over, it was the first thing she did…it was like God said, “Anne-Marie, I am faithful, even when you are faithless.” God likes to give me reality checks.
So below are some new videos…Reagan has moved her knees under her as if trying to coordinate getting into a crawl, she’s rolled over, and she has given me the greatest joy in laughing…doing the Reagan laugh. I love her…I love her…I love her.
I am SO tired, but I am forcing myself to write this blog b/c I have to share the good that we experience.
Today our family unit went to Nemours to see Dr. Ried. She is the Division Chief of Physical Medicine and Rehabilitation at the Nemours hospital, and our genetics Dr. had her squeeze us in ASAP since she’s scheduling out as far as August for new patients. When Dr. Ried walked in, her eyes lit up…”Look at you! Look at you!!” she gasped at Reagan. She told us she was not expecting what she saw. Based on what our genetics Dr. had told her from us being in the hospital for two weeks, and based on what she knew of the MRI, she was not expecting eye contact, or purposeful movements, or sitting by holding her head up on my lap. She was expecting dismal. She was expecting to “have a headache” after our visit.
“The quicker kids bounce back after a traumatic event dictates how well the overall outcome will be.”
– Dr. Ried
Dr. Ried said Reagan was doing remarkably well. She said Reagan was doing 100% better than what she expected to see when she walked in.
Dr. Ried is one of the very few physicians in America to be board certified in both pediatric rehabilitation and spinal cord injury medicine. Before completing her medical training, she was a speech pathologist working in the field of brain injury for 10 years. She joined Nemours in 2012 from Shriners Hospital for Children in Philadelphia, where she was medical director for rehabilitation and taught on the faculties at both the University of Pennsylvania and the Temple University School of Medicine in Philadelphia. – Nemours.org
I read that to Rob this evening and he perked up. “She is literally THE BEST person Reagan could see!” When I asked her, “have you seen kids like Reagan re-learn how to walk, talk and do things.” “Oh YEAH!” she said, without batting an eye.
Holy cow…we were just given a little more hope. We will hold on to that. Rob said b/c of her experience and her evaluating Reagan today…she probably knows the outcome is more positive than not. She wanted to take a video of Reagan to put in her chart…maybe b/c she knows the progress through therapy will tell an amazing story. That is our hope, anyway.
We now have three evaluation appts. set for this coming week. Reagan will be seeing a physical, speech and occupational therapist for evaluations…they will all provide reports to Dr. Ried, and she will direct the therapies and treatment focus for Reagan at each of her appts. In addition to those appts, we will see a Neurologist this coming week. We’ve got a busy week planned with four Dr. appts., and we are hoping for more positive news and a plan that continues a positive course of action for the future.
While it’s great that I have something positive to report…we are still exhausted. I’m also having a hard time watching my friends continue to have fun with their kids around Reagan’s age, their kids continue to grow and thrive, while we work on tummy time round two and go to constant Dr. appts.
Tummy time round two
I have to remember that our path is not the same as everyone else’s. God has chosen to refine our faith through the fire during this circumstance.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.
I Peter 1:6-7
Our goal, is to get back to this, which was a week before Reagan was admitted to the hospital for RSV.
I think it’s inevitable for Rob and I to play back the 13 months of Reagan’s perfect health. We both ask ourselves, “did we do something wrong?” Rob beats himself up over the food…he prepared the menu most days, he made her formula…but we were following everything to a T from our genetics Dr. and dietician.
At Reagan’s last pediatrician appt. she said Reagan needed to see an eye Dr. b/c her left eye was turning in. Of course, being as proactive as I am, I made an appt. immediately and I know…I know, Reagan got sick at the eye Dr. Within two days, we were in the ER. While at the eye Dr. for four hours, we all tried on glasses…we let Reagan cruise along the chairs…we didn’t let her play with any toys, but maybe we were too lax at that appt. I beat myself up over that…I have half a notion to send our hospital bills to the eye Dr., but that’s just a wishful scenario I play out in my head and would never ever do.
When we were in the hospital for RSV, could anything more have been done? When we came home and she wouldn’t drink a bottle…should we have been back in the hospital for it to be administered through her nose? Should she have had a G-tube put in months ago in case something like this happened? I don’t think people do preventative surgery on healthy babies who are eating and drinking like a champ.
Reagan never went to daycare…she was never sick. How could this one time being sick spiral into neurological damage, and the loss of her ability to walk, crawl, swallow? We knew with the GA-1 diagnosis that this outcome was a possibility. That’s why we took so many precautions, but we also tried not to live in a bubble.
I may have said this before, I can’t remember…but the neurologist thought this damage could have been done in a day or in a week. One day? One week? Thirteen months can be undone in a day or a week? Even if we knew it was happening, there is nothing we could have done to stop it. Nothing. And we can’t do anything to prevent the same thing from happening again.
When I start down this circular line of thinking at any point in the day…20 or 30 minutes later I’m right back where I was the last I thought about it and ended my thoughts on the matter. This was likely God’s plan all along and there’s nothing we could have done to prevent it. I think of Proverbs 16:9 where it says, “the mind of man plans his way, but the Lord directs his steps.”
I used to think this verse had a completely different meaning…as in, I’ll plan the way, and God will help me take the right steps, and those steps will obviously correlate into the way I planned. Now I think it means that we can have plans and dreams, but God will direct our steps and those steps could take a serious detour, altering everything you had planned out for life.
The Jesus Calling app on my phone has given me a lot of comfort when I read the days devotional. Yesterday it started out with this:
Keep your eyes on me, not only for direction but also for empowerment. I never lead you to do something without equipping you for the task.
I know God calls people to do tasks they don’t want to do…and everyone says God doesn’t give you more than you can handle…I guess we should be thankful God thinks so much of ordinary Rob and I to handle the care of Reagan. We have to remind ourselves that Reagan is not ours…she is God’s child and he has entrusted us to care for her. This is the case for every parent…your children, they belong to God…and God determines the steps for you and for them.
Believe me, it’s hard to reconcile all of this in my head…that’s why I constantly think in circles. Maybe eventually, I’ll begin my thoughts where they end…this was God’s plan all along, and God is doing something great in the child that he’s entrusted to our care.
Today Rob and I went to several places with Reagan to see what kind of therapies and options for care we had available. It started with a trip to the medical day care about 30 minutes from our house and we weren’t overly thrilled with that option or location. While it’s run by a competent staff of nurses who know how to administer medication and feed via the G-tube, and it would give us a break, it just didn’t feel like the right fit for us, at least right now. There is one other place that we will look into that’s a medical day care and it’s a little closer to home so we’ll see how we feel about that place.
After that trip, we visited an Arnold Palmer outpatient place for therapy. Reagan would be able to get all of her therapies (physical, speech, occupational) at one location, but we won’t know if she’ll be able to do all of them at once, or if it will be physical therapy one day, speech another, etc. She will tell us how much she can handle…if she can do an hour and a half and all three at a time, great…if not, that’s OK…we’ll be going at Reagan’s speed on all of these therapies. Rob and I really loved this place, it was clean, in a nice and convenient location, plus it seemed they had every imaginable therapy equipment on the market. The people were super nice too…We feel that Reagan would thrive in that environment.
During our car ride, Rob and I discussed that taking Reagan to these places were not in the grand dreams we had for our daughter. This was not the road we had envisioned. But even still…it’s important that we dream big for Reagan so she can accomplish great things and overcome the adversity that has been put in her path. This is the road God put us on and it looks like it’s going to be a long and bumpy one…but it’s our road so we’re going to have to keep going forward on it until we get to a smoother path…hopefully there’s a smooth path in the future.
While at the Arnold Palmer outpatient place, the lady recommended checking out the UCP (United Cerebral Palsy) center near UCF. I explained that Reagan didn’t have Cerebral Palsy and she said she didn’t need to. Apparently the UCP center caters to both children with special needs and others who don’t have special needs. My understanding is that it’s an integrated learning environment with children who are both “normal” and children who have “issues” which is basically how the lady put it to me. I just thought it was interesting…Reagan is labeled as having “issues” when in reality, we all have issues, whether we want to admit it or not.
Our dream now is to help Reagan overcome the challenges and difficulties that have been placed in front of her. To be quite honest, I feel like everything she’s doing is a complete miracle. Today she was holding her head up really well and reaching for a balloon out of my arms while holding her head up which required a lot of balance and focus. From looking at the MRI and listening to the Dr. about Reagan’s entire basal ganglia being damaged, I don’t understand how she’s doing these things. I feel like she shouldn’t be doing any of this…and yes there’s a long way to go, but she continues to eat when I feed her food in a spoon, she’s holding her head up, making tons of eye contact and is very alert, she smiles A LOT and vocalizes…even if it’s not always with words, she’s telling us things and she’s communicating.
The UCP center seems like something we may consider down the road, but right now I think we will be focusing on therapies at outpatient facilities and possibly in our home if we are able to find someone good. There aren’t a lot of medical day cares, but we are still open to that idea, IF it seems like the right fit.
Today was a good day…I feel like we got the ball rolling for Reagan.
I also made four follow up Dr. appts today…I used to think we were busy doing stuff for Reagan before…that’s nothing compared to this. On the bright side, we fed Reagan in the car through her G-tube while we did all this stuff…and she ate and napped at the same time, now that’s killing two birds with one stone!
Yesterday we took some pictures in the lovely Easter dress that someone gifted to us. Reagan is just so beautiful to us…inside and out.
Friday morning (4/11) I had Anne-Marie post an update on Facebook…we were transparent with everyone on how were feeling after meeting with our geneticist and getting the preliminary report of Reagan’s MRI, however, I did not post my thoughts that evening after we had met with the neurologist and he reviewed the MRI with us. This is what I had typed up, but didn’t have strength to finish it or post it.
Friday evening note:
“After speaking with Reagan’s neurologist this morning, the diagnosis is actually much worse than first thought. Instead of the brain damage being isolated in one section or part of her Basal Ganglia, the entire Basal Ganglia has been damaged. (From wiki: The Basal ganglia is associated with a variety of functions including: control of voluntary motor movements, procedural learning, routine behaviors or habits such as eye movements, cognition, and emotion).
Our fears have been confirmed, our little sweet RayRay is lost and she isn’t coming back. Only the shell remains for us to “manage & make comfortable” – as the doctors put it. Our hearts and spirits are literally broken and laying in pieces on the floor. We don’t understand. Reagan’s last moment with us was to turn and grab Anne-Marie’s hand, take a couple quick steps towards her and fall into her mother’s arms to give her a hug and kiss…something she just started doing a week before getting sick and being in the hospital for a week. After that, she turned to crawl back to her toys and play, but collapsed. Just like that, she went from being full of life to not.
The doctors told us that she has no chance of recovering from this. She won’t be able to crawl again let alone walk, won’t be able to talk or even be able to smile at us.”
I’ve cried a lot these past few weeks. Easily more than I have my entire life.
It has been an absolute roller coaster physically, emotionally, and spiritually. Utter exhaustion, uncontrollable crying, hopelessness, outright anger…all replaced with rest, joy, renewed hope, and a tapered down anger. But I’m still angry.
While my feet are planted firmly on the Rock, I still have been battered and beaten from this ordeal; however, I know there is hope. That hope comes from my faith in the one and only true God, our Creator. It is not a kind thought or some other silver lining, because life cannot be lived there. If you live your life there, there is no depth. There is no dynamic relationship between you and your Creator, something he longs for with us. I’m pretty sure God doesn’t mind us questioning Him or his plan, as long as we remember the lesson he taught Job. (see Job 38-42)
I’ve also found comfort in knowing that there are multiple examples in the Bible of people not wanting to face the trials God has set in front of them: Moses, Jonah, even Jesus. Even though Jesus never doubted God’s plan, he still questioned God and asked if there was another way – any other way than the cross. “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” (Matthew 26:39 NIV) Then Jesus goes on to question God two more times, versus 42 and 44.
I find a lot of comfort in those verses, especially now going through these dark times. Even though Jesus was 100% part of the Holy Trinity, he was also 100% human. He understood both the plan and the pain of the cross, and wished there was another way. To me, this is one of the best examples Jesus shows us his humanity. Jesus just doesn’t blindly accept that this is the path chosen for him, but questions it. He doesn’t question it because he doubts the plan or thinks he has a better way, but it is simply a cry from his heart…his human heart.
I don’t believe God wants me to blindly accept this path He has set forth for me in this life. Life is difficult, and it’s meant to be. [Thanks Adam and Eve for screwing that up.] Fear, despair, sadness, hopelessness, depression—all of these are a part of normal life, but some want to mistake them for a weakness, a lack of faith or punishment for some sort of sin. Some try to replace these with some sort of naïve optimism, blind faith, or bright, fluffy Internet memes to brighten any gloomy day. Sooner or later, the coldness and harshness of life will catch up to you—and no meme is going to fix that.
God wants us to question the path He has set in front of us. He wants to hear the cries of our heart and be the glimmer of light in the darkness of life. He wants us to confront our shortcomings, fears, and everything that hurts us head on. He wants us to wrestle with Him like Jacob did. (Genesis 32:22-32)
God never said that life would be easy, it’s actually more difficult following after Him and the path He wants us to take. I try to remember that we live in a fallen world; sickness and pain do not come from God but the enemy—and I hate that guy. But my cries are directed to my Father, and He has one heck of a shoulder to cry on.
Rob and I came home with Reagan on Saturday after being in the hospital for 12 days. We needed those 12 days in the hospital and I can honestly say the past two weeks have been the hardest weeks of my entire life. The marriage vows “for better or for worse” are definitely being tested right now. This is THE WORST! I really do hope better days are coming for us and our baby girl.
Saturday when we walked over from the Ronald McDonald House (RMH), Reagan wasn’t in her room again…this time she was actually in a board meeting with the Dr.’s and nurses of the floor…she was brought in there to sit in. Supervise maybe? I don’t know but Rob and I tried to find her and I finally saw her stroller sticking out of a conference room door around a corner and everyone was giving their reports on the patients on the floor and Reagan was following along. I wish I had gotten a picture of that! It brought a smile to our face…we savor the little moments, the tiny smiles, laughs and victories. The nursing and Dr. staff love Reagan and they got to know us pretty well too…it’s heart warming when people take an interest in your child and when they love them well.
The only reason Rob and I didn’t go home on Good Friday is b/c we wanted to go to the CPR class offered across the street at Winnie Palmer hospital for Women and Children. Since Reagan has had three seizures now, we want to make sure we know how to administer CPR if that situation should arise. The extra day also gave us an opportunity to fully care for Reagan, meaning we administered all of her medications, started and stopped the feedings via the pump and feeding tube and learned how to use our pump properly. We also cleaned her surgery site…I almost passed out, so I let Rob know he has to do that. It’s SO much work! And it’s frustrating, we both just long for how things used to be. Fun bedtime routines, fun eating food…everything was fun…and it was getting even more fun before it all just stopped and we regressed months back.
After our CPR class, we packed everything up and headed home. We had Reagan’s medications, the gazillion new stuffed animals Reagan received from all our lovely friends and family who packed our room full of balloons, stuffed animals, toys, flowers, etc. You guys totally rock!
On the way home with Ray Ray in the back seat, the gravity of our new reality started to hit home.
The work involved now is just so much…Rob and I talked about the “what if” scenarios (what if she had a seizure while we were driving…what do we do?). We talked about how her new bedtime routine would look…we talked about where we would put her when feeding her. Would the high chair work? Would the reclining bouncy seat work…the one we put away when she was six months old? Is she too heavy for that? I don’t know…I am doing everything in my power to avoid purchasing something from a medical supply store, but it might be inevitable. So, if anyone out there has ideas on something good to put Reagan in while feeding, something that would hold her long, 25lb frame, let us know. She can’t hold her head up on her own completely, so it’s hard to know what to do. The “snug a bunny” bouncy seat worked, but she’s pretty heavy in it and probably over the max weight limit.
Tonight, was a little bit of a cluster at home on our own. The first time we fed Reagan she did well…we went for a walk and then tried to put her down for a nap, she didn’t want to do that…so we brought her to the family room and she fussed for a while. I think she was tired and also frustrated inside. Her fussiness is magnified to us b/c Rob and I feel like failures so often b/c we have to learn a new system and schedule all over again…it feels like we have to learn all about Reagan again and learn about what her cries mean…everything is just so different.
It took Rob and I 20 minutes just to figure out what medications to give Reagan and how much of each one. She’s now on six medications, some are multiple times a day, some don’t have the same name on the bottle as the sheet of meds that the nurses gave us b/c they are generic…so by process of elimination, we figured out what she needed and when. It was too much for me and I cried into my mommy’s arms. I just wept and I can’t remember the last time I cried to my mom like that. It’s been years I bet…but Rob had to be there for Reagan and I’m glad my mom was there for me. She’s been amazing throughout our whole ordeal and is always there for us and I’m so thankful for her.
Not only is Reagan feeding through her G-tube, but we have to feed her late at night to avoid waking up in the middle of the night and we have no idea how these feedings will go. We have to be so stealthy as to not wake her up, and the stupid machine she has BEEPS so LOUD!! To go from sleeping 12 hours at night, which we worked for 11 months to get up to, to only eight hours and feeding from a tube and machine feels so defeating. But we remind ourselves that this won’t be forever, even though it seems like it sometimes.
On a positive note, we have been completely blown away by everyone’s kindness. Waiting at our house was a gift basket from some people that work in the same complex as Rob. And a gal that I met once or twice a few years ago, who has a mutual friend in common, organized an entire gift basket from women I don’t even know. She had an Easter dress custom made for Reagan…and then the lady who made the dress told me to contact her for a special order. Chocolate covered strawberries were delivered, gift cards for Starbucks, massages, iTunes, books and magazines were all in the basket. Not only that, these women, who I don’t even know, wrote lovely notes and told me I was a good mamma, and said Rob and I were great parents…Rob read them out loud while I was rocking Reagan and I just cried. Knowing that people care, and that people are praying for us…I feel like there are thousands praying and I promise you, we need every single one of those prayers.
As we were driving, Rob said,”People want to help us and I don’t know what to tell them.”
“They can just be our friend,” I said. “Be our friend…be Reagan’s friend, and accept her for who she is and accept us through our struggles. Be our friend.”
It’s so hard to update Reagan’s status within a timely manner b/c so many things happen on a daily basis and we have to concentrate on absorbing the info and processing it…we’ve barely been able to discuss how all of this will look once we get home. So please forgive the re-cap from earlier in the week, but I know the updates have helped everyone to process along with us. And we are SO thankful for the outpouring of support.
Monday On Monday Rob and I had a meeting scheduled with Reagan’s doctors. We sat in a conference room with a Neurologist, Geneticist, two Internist Dr.’s with Arnold Palmer and a Social Worker. They told us to prepare our questions, and we did…three pages worth.
I would have never imagined we’d be asking questions like these in regards to our daughter:
Are there stem cell treatments available to regenerate the brain? (no)
Will she be able to walk and talk? (unknown)
Will she be able to learn her ABC’s? (she should be able to learn, but we will have to wait and see)
Could the brain damage spread? (you can’t stop damage from happening, but it doesn’t spread per-say)
Could a seizure cause more damage? Could her GA-1 cause more damage? (yes)
Do you have any success stories? (everyone is different…we were provided with three or so positive stories)
Has any research been done in cases like this? (no)
Are there any clinical trials? (no)
What if she has a seizure in the middle of the night? (the neurologist said most parents don’t sleep well at night we could get a seizure dog if we wanted)
How intensive does therapy look? (Reagan will tell us what she can handle)
How much will she regain? (unknown)
Rob and I have talked over and over about how the doctors know absolutely nothing about the brain…kids are walking and talking with MRIs that show they shouldn’t be doing any of those things. And then some kids aren’t doing much when their MRIs show minimal damage. It’s like there’s no rhyme or reason…the brain is just so complex, only God knows what’s going on inside of Reagan. We have so many questions and few answers. Our circumstances require absolute trust and reliance on God to fix Reagan. They require God to show up and be the Great Physician for Reagan. This happening to Reagan requires Rob and I to let go…we can not fix her, we can not fix our sadness, we can not fix anything…we HAVE to rely on God in order to get through.
Even though Monday started out with an intense board meeting with everyone following Reagan’s case, it progressed into the best day in the hospital thus far…I mentioned in a previous post that Reagan saw Bauer. She smiled, laughed a little and expressed some beautiful emotions as a result of seeing Bauer. And she’s continued to improve throughout the week…
The one thing we had a tough time getting under control was Reagan throwing up during every feeding while in the hospital for a week. The GI doctors wanted to do a PH test which meant another tube down her nose. The purpose of the test was to see if she had any reflux or if she was aspirating. The PH tube was put in on Monday evening and the Dr.’s wanted the test to last 24 hours, during which we were to write down every single thing she did. If she sneezed, if she fussed, what time the fussing started, when it stopped, if she burped, if she threw up, when she was sleeping, when she ate, when medications were administered. They wanted us to make all these notes in order to correlate our notes with what they were looking for on the test and we gave them three pages of stuff. The Dr. was impressed with how many notes we had taken and he told me, “You’re going to make my job hell with all these notes,” and I told him, “Good! What do you think we’ve been going through.” I’m happy to say my spiciness has only increased by being in the hospital…I may be small in stature, but I’m a big mamma bear and the Dr.’s began to see that they were going to need to defend their position and answer all of our questions to our satisfaction before they left our room.
With two tubes in Reagan’s nose, she was so uncomfortable that she barely slept…as of 12:30 a.m. on Tuesday morning, I had to go to the Ronald McDonald House (RHM) so that I could get some sleep…Rob came shortly after.
Tuesday When we came back on Tuesday around 7 a.m., the nurse said that Reagan had a rough night sleeping. When the Dr. made his rounds he said, “I heard she had an Ok night…” and I immediately corrected him and said, “Her night sucked and so would yours if you had two tubes in your nose…”
The nurse said that during the night Reagan was actually calling for us, which is HUGE. She was saying “Ma” and “Da” and “A Ba” (Bauer). She continued to say Mom and Ma on Tuesday when she was upset. The speech/occupational therapists that came by said speech is the hardest thing to get back so they were very pleased with her progress. Literally everything Reagan does is a miracle.
Two of our Nemours team members came by on Tuesday and I told them about our walk around the lake and how even though we were so angry, that for that brief moment I felt near to God…being among the lowliest. They said that’s where miracles are performed…they are performed at the hospital and they are performed in dark times and places…that’s where light can shine the brightest, and I pray it continues to shine so bright…I pray that Reagan’s life has an impact. Rob and I have discussed that prior to Sunday, we felt like Reagan would never reach her full potential…however, our tune has changed as we’ve begun to accept the new call upon our lives. Maybe, just maybe…THIS is how Reagan will reach her fullest potential and reach the most people. We just pray that Reagan’s life has an impact on people and that God shines bright through her and us.
On Tuesday, even though Reagan was making improvements, I personally was not having a good day. We brought Bauer for about four hours and her reaction wasn’t the same. Bauer laid by her crib when she was in there sleeping (which wasn’t much) and he laid at the foot of the chair when we were holding her.
Reagan was so uncomfortable with the two things down her nose/throat and was very fussy. Rob and I had enough of watching her be be upset b/c of the tubes and we told the Dr. we wanted the PH tube out. The nurse let the Dr. know our wishes and he said he would be in our room within an hour. At an hour, fifteen minute mark, the Dr. wasn’t there and I told the nurse I would be coming out of our room every ten minutes to see if she heard from the Dr. and I’d be asking her to page the Dr. every 30 minutes until he arrived. That went on for about an hour and a half and he was finally in our room. The Dr. reiterated that it was a 24 hour study and wanted to keep the PH tube in her nose for the full amount of time, but we told him: “there’s nothing new you’ll learn in the next four hours that the last 20 haven’t told you. Take it out now.” So they took the tube out and she was much happier. The findings of the test were that she did have a little reflux but not much, and that was the main source of her discomfort. Medicine will be able to control the reflux and b/c of the PH test results being received Tuesday, her surgery to have a G-tube placed was able to happen on Wednesday.
Sigh…sometimes I just have to take a big huge deep breath to absorb everything that is coming out of my mouth. It takes a long time to digest what the Dr.’s say.
Neurology On the neurological front, the Neurologist that she will be seeing works with our Genetics Dr. regularly. They have a lot of the same patients so the communication btw the two is daily. The Neurologist also has experience with metabolic patients who have neurological issues. B/c that is so rare, we are blessed that he’s here in Orlando and that he already works closely with our genetics Dr.
In the next few weeks the neurologist wants to try a new medication (Topamax) to help with some of Reagan’s involuntary movements. While she is on a medication to control the movements, they still happen and I can only imagine how frustrating it is for her to want to do a specific thing, and not have control over it. You can see her mind working…the connections just aren’t clear. Prior to trying Topamax, the neurologist wants to exhaust the current medication for her movement disorder before trying a new one as to not add another drug right away.
The neurologist mentioned that Topamax has worked in three patients to either completely control involuntary movements, or it’s worked to control up to 90% of involuntary movements. Not sure if you noticed the number I threw out was THREE. As in the only literature that’s been published for this drug working in movement disorders has been in three out of three people in the entire country, none of them children…none of them metabolic. What we are dealing with in regards to Reagan is as rare as rare gets. And the courage and strength required to deal with this…it can only come from God. There’s no human strength that can handle what we are dealing with. Please don’t let this blog or us communicating all of this translate into our strength to handle this on our own…we are broken, but we have hope. And our hope grows every day with Reagan’s progress.
Reagan had her G-tube put in on Wednesday and she did really well with the surgery. It was so hard watching her be wheeled away on a stretcher while we were escorted to the waiting room.
The surgery went really well…she came out of anesthesia fine and has tolerated being fed…no throw up, yay! We will take any victory we can get and Reagan has continued to tolerate all of her feedings.
Thursday Bauer came on Thursday and Reagan seemed to enjoy his company. Not the huge smiles or little laugh that we got on Monday, but she seemed more at ease…familiarity is what she needs, and Bauer gives that to her in a way that only he can. I can’t tell you how many people have commented on how fantastic our dog is…and other patients and parents asked if Bauer could go in there room, which we declined for obvious reasons.
We received a delivery to our hospital room for things we will need at home such as Reagan’s feeding pump, feeding bags and a backpack to store it all in. We also got an IV pole that will go in her room. This is why we went home to grieve earlier in the week…that’s how her room will change and we knew it was coming. Her room will now have an IV pole. I don’t know what other things will fill our house as the days, weeks, months and years go on, but our first shipment of medical equipment arrived and it likely won’t be the last. My friend Sami said we need to decorate the IV pole…I have no idea how to do that, but I’m sure we’ll figure it out.
Friday was a pretty good day. Reagan actually made really great progress and the Dr.’s, therapists and visitors we had said she just looked awesome. REAGAN ATE PEAS! Peas are her favorite food and we gave her peas by mouth and she ate half the container. It was a little difficult for her at times…her mouth isn’t as organized as it was before, but it can come back, we can work on it…the lady said feeding is harder to get back than physical therapy…same with talking, and Reagan has said words, she’s laughed, and now she’s eaten PEAS!
Reagan is such an amazing girl, and her strength and will to succeed is evident in everything she does. I hope and pray that she can overcome all of this adversity. I pray her brain can figure out a way to re-wire itself so she can regain all of the skills she had. In just a weeks time, she’s come SO far. She smiles, she’s laughed a few times, she wants to play with her books and she’s turned the pages, she’s self soothing herself at night when she cries, she’s starting to make more sounds, her head is regaining strength…and we have been sitting in a hospital for 11 days with hardly any therapy for her to improve. The road is long…we will have to start with tummy time again, and work really hard to help her regain what she’s lost. Reagan is counting on us to help her and we are going to do everything we can for her. We can do it…we will do it, but it will not be easy.
I know I’ve mentioned the meaning of Reagan’s name before, but it’s worth mentioning again. Reagan means “little king” but some translations have it meaning “noble” and her middle name, Elle, means girl. She is quite the noble girl.
Picking a name and meaning we liked was super important to Rob and I. I had heard before that 90% of people live out the meaning of their name, so when we’d throw out a name, the question that inevitably followed was “what does it mean?”
My mom said that God names your children…and I think she’s right. Yes we picked out those names, but look at how they fit her and the story God is weaving together for her.
I’m going to share a timeline with you guys as well as photos and video so that you can SEE the results of Reagan’s GA-1 and the damage that has happened.
Thursday night On Thursday evening, we learned the results of the MRI from Reagan’s geneticist…the neurologist went over everything on Friday, but Thursday our Dr. from Nemours came to break that news to us. That night our close friends Trey and Rachel, Rob’s sister Melissa and my mom came to the hospital to be with us. They saw Reagan flailing on me, she was beating me up by banging her head against me and I was filled with so much hurt and anger that I could barely breathe. Below is a video we sent to our Dr.’s so they could review and determine a medication to give her that night to help her sleep and prevent her from continuing with all of these uncontrollable movements.
Friday On Friday Rob took this video…if you look closely you can see her eyes flutter back and forth. We cried until exhaustion on Thursday, Friday and Saturday. There was no hope.
Saturday We took a walk around the lake on Saturday. It was a bright, sunny day. Reagan didn’t turn her head when the sun was too bright, she just closed her eyes. Our hearts sank further as we wondered if she would always look up and to the left and never move her head the other direction, or never make the connection to turn away when something was bothering her. It was like she had given up, and watching her like that…we were giving up too.
That same day, we also went home for a little bit to grieve the things that were and of course, Bauer was good to perk us up. I cried on the floor of Reagan’s room b/c I knew it wouldn’t be the same. I cried when I saw her toys b/c I just watched her not play with anything. After our walk around the lake on Saturday, I was only encouraged a little bit b/c I felt God had made himself near to me, NOT b/c Reagan had done anything to give us any sort of hope and not b/c God had given a even a glimmer of hope. I felt near to him for a brief moment, but otherwise there had been silence.
I think this would be a really good spot to take a side bar…the reason I have posted the photos and video is to express the gravity that we feel due to our current circumstances. Some people, in their attempt at being encouraging, have said she’s going to be OK…that we need to move on and take this new stage of life by storm. Some people have told me I’ll still be able to read to Reagan and sing to her. I’m fully aware of what I can and CAN NOT do with her…and the things I can not do I am grieving. If you can’t understand that, then you are not my friend. Even Jesus himself asked God if there was any other way. Even Jesus, on the cross, asked God why he had forsaken him. Please realize, we felt that God had also forsaken us and it’s not wrong to feel that way.
Reagan has brain damage. Please let that sentence sit with you. Read it again if you have to. And then YOU imagine receiving that news. YOU imagine noticing a drastic difference in who your daughter was vs. who she IS NOW. She’s not playing peekaboo. YOU watch your daughter struggle to eat, swallow, vomit every time she is fed through a tube and then I’ll tell you to get over it. I’ll minimize you. We are not going to just get over this and move on. Our entire life…our ENTIRE LIFE has been altered FOREVER. If you don’t understand that, then do not read this blog, do not comment and do not try and make it seem that I need to just quickly accept this and move on and always be positive. We have an army of friends that are willing to stand in the gap for us, to walk in the desert with us, to grieve with us and if you want to minimize that and you want us to pass it over then just leave. I don’t need anyone telling us how we SHOULD feel or SHOULD act or whatever. There’s a time and purpose for everything under heaven, including our anger, including our doubt and God gives us space to do that. I shouldn’t even need to write a paragraph like this, b/c it is obvious and plain to see due to the magnitude of this situation…but I guess I needed to clear a few things up. #letsmoveon
Sunday Waking up Sunday morning at the Ronald McDonald House (RMH) was so hard. We didn’t even cry that morning like we did the previous mornings. We were just so tired, angry and were dragging emotionally. For me, waking up at RMH requires me to have an internal fight with myself. I want to get up and go see Reagan, but I’m sad at the Reagan I see. And I’m angry that we’re not home watching her bounce up and down in her crib on the monitor, talking and waiting for us to go and get her…b/c as soon as we would walk in her room she would just smile and laugh and be so excited to start the day. Her excitement had been gone since Tuesday when we came in to the ER for the third time.
So on Sunday (Palm Sunday), I called the nurse at 6 a.m. when we woke up to see how the night went. She told me she cuddled with Reagan during and after her feeding and since Reagan didn’t want to go back to sleep, she put her in her stroller and took her to the nurse’s station to hang out.
I’m sorry, what?! You are interacting with my baby with lots of other people and I’m not there? Talk about a big fear of mine being dealt with at that moment in time since no stranger had ever watched Reagan before and we had tried to limit interaction somewhat to prevent her from getting sick. But as I thought about it, I thought it was awesome. Reagan loves people so I’m glad she was having good interaction and at the same time a fear of mine in having others take care of her was lessened b/c we really don’t have a choice. We are passing the two week mark of time in the hospital and if we are expected to get any sleep, it will be at the RMH. We need sleep to make the right decisions and to be there for Reagan during the day…the only way it’s been somewhat manageable to do is b/c the nurses have been absolutely wonderful.
When we walked up to our floor on Sunday and saw Reagan with nurses cooing with her and surrounding her in love, my heart lessened the grip of bitterness and anger just a bit. When we looked at her, she looked back and Rob told me that was all he needed. He clung to that tiny bit of hope.
“My daughter looked at me!” he said.
Reagan turned a corner on Palm Sunday and she helped her Daddy do the same. She helped everyone. Rob and I discussed how it had been three days of darkness, and on the third day, Palm Sunday, we received hope. God has a purpose and reason for everything including sending us a message by giving us hope on the third day of a very dark journey.
Sunday turned out to be a good day, she was much more alert, making eye contact, noticing when the door opened and looking to see who entered…she also noticed when a strange man (Eddie K. from church) tried to hold her. She wanted nothing to do with that, and as soon as she was in Mommy or Daddy’s arms, she stopped crying instantly. That’s a good feeling (sorry Eddie)…but our baby girl knows us and finds comfort in our arms. Reagan was also turning her head from side to side and was just so much better than the day before. We also gave her one of her favorite toys, a little piano, and she made purposeful movements to hit the keys, whereas the day before she didn’t even acknowledge it. Her movements are not the same, there is definitely a disconnect btw her brain and what she wants to do, but it was a big improvement.
Thank you Jesus for giving us something to hold on to, and on Palm Sunday too.
Monday On Monday when we came over from RMH, we went to our room and Reagan wasn’t even there. The nurses were walking her around in her stroller and feeding her. This time when we greeted her, she gave a tiny smile…not her old Reagan smile…a new Reagan smile. It made me sad b/c I love her big smile…then I started thinking about her laugh and missed her all over again.
I asked the nurse if the therapy dog could come and visit Reagan…she didn’t know when the dog came and started asking if we had a dog. We told her all about Bauer and she said, “you know, you can bring your dog if you want.”
She said all we needed proof he was up to date on his shots and proof he had a bath within 24-hours. Done. Within 10 minutes he had a grooming appt, vet appt. and my neighbor Debbie was shuttling him out the door. Within three hours, Bauer was in Reagan’s room and she lit up!
I have so much more to update but I believe it’s time for this post to come to a close. Thank you so much for all the prayers everyone. Reagan has surgery on Wednesday to put a G-tube into her stomach to help with feedings. Rob and I covet your prayers so please pray that Reagan does well in surgery and continues to improve. More updates to come.
You call me out upon the waters The great unknown where feet may fail And there I find You in the mystery In oceans deep My faith will stand
Rob and I take about 3-4 walks a day with Reagan around the big pond at the Arnold/Winnie Palmer hospital complex. During the last hospital stay I remember telling Rob, “It would stink to be one of those families who walks around this pond as the outing of the day…I don’t want to be that family.”
Yet, here we are…that family. A lot of things I didn’t want to happen have happened…
Anyway, we were on the side by Orange Ave. so the traffic was loud, and I heard this woman singing, just belting her tune across the lake. She was in a wheelchair and didn’t have any legs, she was older…not sure how old. She didn’t have many teeth either, but it didn’t stop her from smiling huge when we walked by.
A little further down was a man on a bench reading his super worn out Bible. He didn’t look completely homeless, definitely poor though, tattered stuff, a big backpack of belongings like he carried a lot of stuff with him.
And then there’s us, and our daughter who is just gazing out the side of her stroller while we walked the lake…not much expression coming from Ray Ray, but I think she liked being outside.
Earlier in the day, I went to Barnies to pick up a coffee. There were students on their laptops, some were studying with their books and highlighters close by. A couple of women were talking, laughing and carrying on.
I compared the two experiences and thought to myself, Jesus is hanging out here at the hospital. Society remains at the coffee shop…above the fray, above the marginalized, likely not even thinking about the lowliest of them…but Jesus doesn’t hang out with the popular kids. He hangs out with the lady who people probably look at in disgust b/c she doesn’t have legs or teeth, but if you get close enough, you’ll hear a beautiful voice and see a joyful smile. In that moment, I felt close to God for one of the first times since Reagan’s event. Of course, we are still crying and still mad and angry about all the things we have lost, I don’t think those tears will ever go away. But God felt close, and that was comforting, even if only for a brief moment in time.
Last night was the first night of Reagan’s life that Rob and I slept under a separate roof than our daughter. I feel guilty and terrible, but Rob and I needed some sleep and the Ronald McDonald House had a room for us to do just that.
I woke up at 5 a.m. angry and full of despair, I couldn’t go back to sleep, so I decided to write.
To say that we are heartbroken over this would be the understatement of the century. We look at pictures and videos from just a week ago, and that girl is no longer here with us. I miss her terribly. How could something like this happen so fast? One minute she was playing with us and the next minute the very essence of Reagan…her personality, her laugh, her smile, her chattiness her sweet little self was ripped away from us. She was ripped away.
We have cried so many tears, I can’t even keep track of all the things we have mourned and grieved that we will no longer be able to do with Reagan. Our lives were changed in an instant and learning how to deal with that is a tall order.
Friday morning, the Neurologist went over Reagan’s MRI. He showed us that her basal ganglia was badly damaged. It looks like a butterfly on the MRI and he said it’s not just one section that’s damaged, it’s the entire thing. Everyone is in agreement that the damage is due to her GA-1 condition, and b/c of the basal ganglia being damaged, the seizures were a result.
We did everything right! The diet, the blood tests, we were careful where we took her, she didn’t go to daycare. Even to this day, her blood tests are completely normal. I asked her Dr. how this could happen without warning and she said the blood gives us an indication of what’s going on in the body, but not the brain. To test what’s going on in the brain you need spinal fluid, and no one will test that on a regular basis…not even researchers. I looked at her straight in the face and said, “Did you fuck up? Did we? Did the Dr.’s here taking care of her for RSV?” She said no, that unfortunately this can happen. But Rob and I were so hopeful that b/c this was caught on newborn screening and we had a plan that we could overcome this. Did we doubt God too much? Did we rely on our own strength too much? How come this is where we find ourselves?
Rob believes, and I agree, that on Tuesday at 6:40 p.m. when Reagan’s entire disposition changed, her basal ganglia was harmed and gave out. It was like a mac truck hit her body and in ONE SECOND was completely dazed, limp and confused. And now that is everyone’s reality.
Her seizures caused some damage in the front of her brain…little spots here and there, but the Neurologist said what her GA-1 did to her is worse than the seizures. Seizures you can control, you can overcome…you can’t overcome what kind of damage is in her brain. It is irreversible. God would have to perform a serious miracle, but there’s no drug, no therapy, no earthly thing that can be done to reverse that and bring her back to us. (**Side note: I know the FB update said she may have dystonia, and that’s unknown still. Her uncontrolled movements made us think that, but it could be another movement disorder. It’s too soon to tell).
The Dr.’s say she’s still recovering, but she looks spaced out. They say she knows who we are, and she looks at us. I asked her where Mimi, Dada and Mamma were yesterday while holding her and her gaze moved in those directions as if to acknowledge us.
Every single night since we found out about Reagan’s GA-1, we prayed for her, not only throughout the day, but as part of her bedtime routine…and as I write that, I know that routine, which was a sacred ritual, will undoubtedly change. We used to bathe her every night, and then Rob would read to her while I fed her a bottle, and then we’d pray and sing three songs before she went to bed, Jesus Loves Me, Amazing Grace and Silent Night.
Rob looked at me with tears so full in his eyes and a voice he could barely muster out and said: “We prayed every single night for God to protect her, we prayed for a legion of angels to surround her crib and our house, to keep any sickness and illness at bay, and that if she came into contact with anything for her to not be affected. We prayed that God would help her overcome her GA-1 and ultimately heal her from it. We prayed for continued milestones to be met, for her to walk and talk and have friends and go to a good school and to be smart and to love Jesus and accept him as her savior. We prayed for her future husband.”
Rob said, “I have never prayed so much or so hard for anything or for anyone in my entire life!”
We are constantly asking “why” and I hate that question b/c there are never any answers. All our dreams are gone. They are replaced with unknowns and anger for what our future holds. Our life verse, Jeremiah 29:11 says God has a hope and a future, plans to prosper us and not to harm us…how does this plan align with that verse?!
This morning I read a verse from Isaiah 55:8-9: “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”
To me it’s such a battle to lean on Jesus b/c I know he’s the only one who can provide us any comfort at all, yet the decision to allow Reagan to turn into what she is now came from Heaven. So I’m going to the source who agreed to let this happen to my daughter to bring me comfort too? I want Reagan to be how she was…or I want her to go to Heaven and be completely well and whole. It’s not fair for to her to live like this, it’s not fair to anyone. Now, her awesome personality is gone and I wanted her beautiful self to share that with the world as she grew up. She is so beautiful…everyone always stopped us when we were out to comment how gorgeous she looked, and the nurses are still doing it. She’s still so beautiful.
God, I miss her so much!!!
Having a child with disabilities has been a fear of mine since I was a teenager. And I hate how God is making me face this. My heart gets ripped out every time I see a little kid talking with his parents around the hospital, or playing or jumping in the lobby. That’s not going to be Reagan. We aren’t going to be able to take her places for her to enjoy…the Dr.’s have told us we are now to help “manage her care and make her comfortable.”
I hate hospital stays that involve talking with social workers. I spoke with one yesterday to discuss how we would care for Reagan. I don’t want to bring her home like this. The social worker mentioned homes that parents put children in if they can’t take care of them, and they visit their kids. Visit. I’m not divorcing my child…she’s still my child and I’m not going to have visitation with her. I want her in my home.
The next option presented was a medical day care, she would go there and get therapy, and it’s run by nurses. I have always taken care of Reagan…when I needed to work, Rob or my mom would watch Reagan and we had a good system worked out and I loved having her home. Even before Reagan came along, I never wanted my child to go to daycare…it just wasn’t something I wanted to do. And now, sending her to daycare, something that the Dr’s wanted us to avoid prior to this crisis, is now what they recommend so she can get the treatment she needs. Rob said he always wanted to take his daughter to school…just not that kind of school. We looked forward to school days where we’d do breakfast before or lunch after. So many things we dreamed, are gone.
The third option was in home nursing. As you can imagine, that can be quite expensive so I’m not sure that’s really an option.
My head just hurts. And now it’s a little past 6 a.m. and we need to get ready and head over to our baby girl and love on her. Please just pray for us to wrap our heads around our new circumstances and for strength. We feel so weak and the grief and loss we are experiencing is just tormenting us.
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