Hopes and Dreams

You know when you find out you are pregnant you head gets filled of all these hopes and dreams that you have for your child, how stupid to think this way to get hopes up to fill yourself with false hope.  None of this matters, right now I am just hoping for normalcy, I am just hoping for a miracle, I am just hoping for one more day where he doesn’t struggle.  

Struggles

What do you do when you have been given a death sentence for your only child, when an innocent 2 year old who has never deserved such a fate now has that staring him in the face?  You are now put in a limbo land of waiting for your everything to pass away. So many questions I have so many awful thoughts; things I don’t want to think about run though my brain, things that will eventually be my reality.  Such emptiness I feel, my new reality being this, my whole world altered.  The reality that it will be most likely that I will have to sit back and watch my son’s life deteriorate in front of my eye.  

How do you let yourself be happy again, how to you move forward when all you feel is numbness and emptiness?  Is it okay to be happy again, is it okay to smile, and is it okay to have fun, is it okay to relax?  I am trying so hard to not ask the question why, trying so hard to not be angry or mad.  I want to plead with God to spare my babies life to heal his body to repair it, only he can. Do you believe in miracles at this point it’s the only hope I have left to hang on to. 

Reed Crosby's Story

I started this blog so long ago and have redone it several times, as I looked back at it this time I was struck to keep a couple of post about our first pregnancy and loss and about our awaiting the arrival of Reed. 

There are a lot of words here I know, but this is everything I remember how I remember, this is RAW and emotional. But it is me and how I see life the last few months.  

I need to keep Reed’s story alive........

Reed’s story started on December 3^rd, 2012, a normal pregnancy, a normal birth, a normal baby, a normal toddler and then…Our nightmare started on November 1^st, 2014. I had volleyball tryouts that morning and took Reed up to the gym with me, both my dad and I noticed we thought he was walking a little funny, but we chalked it up to new shoes. He played and walked around the gym much like normal no complaining, but to have mom hold him every once in a while.  My sweet boy is a mama’s boy in obsessive way.  I had my mom come up and get him from the gym so I could finish up and he could get some lunch and go down for a nap.  It was after that nap that this snowballed or my hell really started to roll.  My sleepy boy woke up to struggle to stand and take steps; he was falling a lot and whining, frustrated.  We continued to watch him struggle and noticed his right foot turning in, it was at this point I called Jesse and we decided to take him in to urgent care (it was a Saturday) 3 hours at urgent care lead us to blood work that came back normal no bone infection, and x-rays on his ankle and knee.  At this time Jesse and I also noticed that Reed’s knee was hyperextending pretty badly.  The doctor told us that both him and the orthopedic surgeon on call both thought they saw a spot on this knee but were unsure if it was a break/crack because Reed showed no signs of pain and when his knee was examined there was no restraint or struggle. He told us to observe over Sunday and call for second opinion on Monday if there wasn’t much change. 

Monday came around and there were no change and my sister, bless her for dealing with me told me to call a certain orthopedic surgeon. One that specializes in children, instead of the name we had received at urgent care. Which I did and they were able to get us in that day. At the appointment Reed acted much the same way on Saturday not showing any signs of pain, was able to walk a little and when examined he had no restraints or struggle, BUT the doctor did say that he saw the spot the other doctor had seen on the x-ray, no new x-rays were take though. His suggestion was to put a cast on him for two weeks and then re-X-ray.  Since the spot was in the knee Reed would need a full leg cast from hip to foot. We agreed to this not knowing what we were dealing with and trusting the doctor.  Two long weeks later we were back in the clinic getting the cast off for x-rays again.  The x-rays showed no spot again and the doctor told us to follow up in two weeks to see how he is doing.  Hopefully he has started walking again.  So we waited and nothing; Reed continued to crawl, everyone told us that this was normal that little kids don’t bounce back as quickly when in a cast because their muscle memory hasn’t been established for as long as adults. The two week follow up appointment came around and still not walking the doctor told us to give it another week, but he thought maybe we should do a MRI or bone scan.  We decided to give it a little more time because both of those procedures would require sedation and we didn’t want to do that if we didn’t have to.  

The day we got the cast off

In the mean time I decided to get a second opinion so we took him in to see our family doctor.  At the time I was looking for any answers so we had the doctor look at his ears really good and he watched him walk.  He told us if we wanted to hold off on the MRI or bone scan a little bit longer we could. At about this time it was the three week mark since the cast had come off.  Reed finally started to take some steps again, but the steps were still very unbalanced and he continued to struggle. We also noticed that Reed’s knee continued to hyperextend.  After a week of him walking and what I thought was getting better the next week I felt like he had regressed.  So in a mommy freak out moment I called my ever so handy nurse/sister Becca to see when she could get us in.  

At this point our family doctor deceived to do x-rays of him.  At this point we were praying for any kind of answer even if it meant hip surgery. The x-rays came back normal. So because of my family history (my grandpa has Friedreich’s Ataxia) the doctor thought it might be best for us to get a referral to a genetic specialist; we agreed to this and told them whoever could get us in the quickest.  Also the doctor gave us a referral to AEA 267 Early Access which is a special education option for kids. He thought Reed would qualify for therapy and speech therapy because his speech is a little delayed.  And so we waited and waited and waited for the wheel to get moving again for these specialty appointments.  

Mayo finally called and decided that the genetic testing was not the way to go that he should see a neurologist first before the genetic testing is done.  So instead of Mayo we decided to see if we could get into Iowa City sooner.  At this point the Iowa City appt. was scheduled about a month away February 23^rd. In the meantime Reed qualified for additional therapy with Early Access he would see a speech therapist, a special education teacher and a physical therapist.  I was excited about these things because I felt like he was finally going to be getting some help and we would be moving in the right direction to getting him better. 

After what seemed forever finally after almost 4 months of looking and waiting for answers we headed down to Iowa City to meet with the neurologist.  We were nervous we weren’t sure what the day would bring we had prayer warriors though.  Reed had been sick over the weekend which made us even more nervous for the trip down to Iowa City, but on Monday morning he seemed to be well again. We got to Iowa City early, actually almost an hour early, and started to fill out paperwork.  A nurse came and got us to take Reed's vitals, she said that since we were here early they like to get those out of the way. That way if the doctor can get us in sooner they will. About 15 minutes later the nurse came and got us again this time for our appointment.  The first people we meet with were two med students they did an initial examination on Reed, and then were going to meet and discuss with Dr. Pearlman before  coming back to speak with us.  It was a lot of history; what happened, how we noticed it, what had been done since the initial injury.  They checked Reed’s reflexes, checked his ears, checked his eye movement, and listened to his heart.  When Dr. Pearlman came in it was much the same, but he also wanted to record Reed walking as well. After further discussion they decided the MRI was the way to go of Reed’s brain, which is what we were expecting.  They said they could admit him and try to get the MRI done sooner or we could outpatient, but it might be a week or two to get the MRI done.  

We decided to be admitted so we could get it done and over with.  So more waiting….once we were admitted to a Room we meet with another doctor and med student and pretty much had the same conversation this is what happened, this is what they have done he isn’t getting better it is actually getting a little worse.  At this point we were waiting to see when the MRI would be done, but we knew we would be there for the night at least.  So Jesse left to run back to Jesup and get clothes for everyone.  While Reed and I waited we visited the play room; which is awesome, and I tried hard to get him to take a nap since he hadn’t had one yet that day.  He finally feel asleep in my arms for about an hour. He would stay in my arms for pretty much the rest of our time in the hospital.  A nurse or tech from MRI came up and said they wouldn’t be able to get him in until 2:00 pm the next day and that he could eat for now, but couldn’t have anything after 6:00 am the next day and could only have 2 oz. of something to drink up until 12:00pm.  

Daddy finally got back and we settled in for the night, I was able to get Reed to fall asleep in his crib and was able to escape his grasp for a few hours, but decided to ask the nurse for a couple of blankets for Jesse and I.  I was a little to loud coming back into the room and up popped Reed.  The rest of the night was very restless, Jesse tried to get as much sleep as he could in a recliner and I laid with Reed in his crib.  You can imagine how that went.  Finally I would say around 3:00 or 3:30am he finally went back to sleep and I got some rest or what I could for lying in a hospital crib.  The alarm sounded at 5:15am to try and get Reed to eat something which he did thank God.  Then they tried around 6:00am to try and get his IV in.  They were unsuccessful and it was very traumatic on Reed, they tried 3 times before deciding to try again later. They kept saying his veins where deep and he was dehydrated.  This was also very traumatic on mom and dad and this was about the time the first tears came for us as well.   The rest of the early morning was spent resting, playing and waiting.  Around 10:30 they tried again to find a vein with no luck; there were continued struggles having to hold Reed down and hearing him cry out in pain broke dad down this time. Finally with three nurses and someone to try and distract him with Reed on my lap and mama holding on to him tight they were able to get the IV into his right foot.   

Another nap and a walk around the hall got us to 1:30 and finally our walk down to MRI.  We were ready, and our MRI nurse was amazing.  I got to hold him until he was asleep and we walked him down the hall---45 minutes later we were paged that he was back in recovery and we could come be with him.  Not 5 minutes later he was awake and groggy and making us laugh because he was being silly.   He was able to finally get something to drink and we were taken back to our room, where he continued to nod on and off back to sleep.  

And then the long, long anxious wait started, waiting to see a doctor, waiting to know the results. We waiting until about 6:00pm before we see a doctor or med student. I was prepared to here tumor and could be cancer, he will need surgery.  What I wasn’t prepared for was your son’s brain doesn’t have proper insulation around his message receptors and as time goes on those receptors will die and stop sending the messages he needs to control his body.  Your son has a genetic disease called Leukodystrophy, what I wasn’t prepared for was that this disease will kill your son in childhood.  What I wasn’t ready to hear was that mine and Jesse’s genetics/DNA are incompatible and because of this we have passed this disease on to our light, our joy, my best friend, our baby, our everything. What will happen now is we will need more blood work to know what type Reed has and then we will know what we are dealing with.  He will need extensive therapy, he will continued to lose mobility, and your son will PASS AWAY from this disease.  There isn't really any treatment, therapy to help with quality of life is really it.  There is one type of Leukodystrophy that can be "stopped" with cord blood and/or bone marrow.  This type wouldn't treat the disease it would more or less stop the progression of it. (we are praying hard that this will the type he has) 

And so we are back to the waiting game we are back to so many questions, we can’t bring ourselves to do research on the internet even though we were encouraged to do so, maybe because we don’t want to know the truth.  We can’t control ourselves at time, we don’t know what normal is any more, and we don't  know how to move forward.  We are seeking a second opinion form Mayo, but if we are being true to ourselves we know what the results of that visit will be.  We have started more therapy and we wait for the end of the month when we go back to Iowa City to find out more bad news. 

We have asked our friend Anna who works for a genetics company to help with possible getting Reed’s DNA looked at closer, and she and they are doing what they can.  We have had amazing community support, prayer warriors all over the country, offers from pregnant friends to see if their cord blood is a match, messages, texts, cards, wristbands, t-shirts, golf tournament, donations, gifts I am sure the list will build. This is our reality now and all we can pray for is a miracle.  #teamreed #staystrong