4 months old!

When I look back at these past 4 months, I'm in amazement.  I can't believe how much has happened and how far Josh has come.  We constantly think back to those days when we were walking to the hospital every morning from the Ronald McDonald House.  It seemed like we were never going to take Joshua home.  Now I sit on my couch and type in the comfort of my own home...with my husband reading beside me, my baby playing, and my dog and cat being their ridiculous selves!  I love it.  We're a family.

Life continues to operate pretty much low-key.  Up to this point we've been having check-ups every 3 weeks.  Our neurosurgeon is reallly happy about Josh's progress and now feels comfortable to see us every 3 months. 

We had a bit of a concern on Labor Day.  We had been noticing that Josh's apnea monitor had been going off quite a bit for low heart rate over the past few nights.  It also seemed to be becoming more frequent as each day passed.  We called Children's Hospital and they decided that without seeing him, they couldn't give an accurate diagnosis.  So we went in for 2 nights while they monitored him.  After comparing his data with that from his sleep study, they decided that it was just a matter of him getting older.  Therefore they dropped the threshold to 70, rather than 80 which is where it was.  We are praying that after his next sleep study he will no longer need the monitor. More often than not the monitor will alarm at 2 am because Joshua scratched his chest and the leads came loose.  We're exhausted and deaf (I can't even explain how loud it is!). 

I've been meeting with his PT and OT with Early Intervention.  It's been really fun learning different activities that help build muscle strength and balance. 

We keep praying for his legs and feet.  Matt and I watch every movement with eagle eyes.  Every now and again he has new movement in his lower extremeties.  Those moments are so exciting!!  There are still great things ahead. 

Sometimes there are tough moments when our hearts just ache.  However, we just remind ourselves that there is so much to be joyful and thankful for.  He's babbling and cooing like crazy.  He just picked up his toy for the first time the other day!  When we look at him, he's not just a kid with spina bifida. He's Josh.  Amazing, perfect, sweet little Josh. 

Normal Life

Being at home is nothing short of WONDERFUL! Nevermind how great it is to sleep in our own beds.  It's so fun to actually feel like parents.  Josh is such a good baby.  He's sleeping through the night which is GREAT! 

He had an appointment with neurosurgery 2 weeks after we got home which was really positive.  The doctor was pleased with his progress.  The wound on his back was looking really good.  We were still using gauze to cover it but rather than being the size of a quarter, it was the size of a dime.   Josh had another follow-up 3 weeks after that appointment.  They did a head ultrasound to measure his ventricles again.  We keep praying for good news and we have been blessed!  His ventricles are still in the normal range!  His next appointment is next week.

Josh saw urology recently also.  The doctor did a Urodynamics study on his bladder.  The test entails filling his bladder with dye because they wanted to see if urine refluxes into his kidneys.  The results were also great news!  His bladder is able to hold urine which is the best case scenario. 

The following week Josh had his first spina bifida clinic.  He met with a rehab specialist and orthopedics.  After having a hip ultrasound and an xray of his spine completed, we met with the orthopedic doctor.  He confirmed again that both of Joshua's hips are out of socket.  Josh also has slight scholiosis which is not at all uncommon for people with spina bifida.  He continues to wear the splints on his feet to loosen and stretch his muscles and tendons.  At this time the doctor doesn't recommend that we put Joshua's hips back in socket because he doesn't show both abductor and adductor movement in his legs.  The balance between both is what keeps his hips in socket.  Essentially his hips would come back out of socket.

Josh and I met with the coordinator from Early Intervention a couple of weeks ago. Early Intervention is a free therapy that comes into the home to teach Matt and I different stretches, positions, etc.  Since he has limited mobility in his legs, building a strong upper body is crucial.  As of right now he will be seeing a physical therapist once every other week and an occupational therapist once a month. 

Lastly, we signed up to be a part of "Walk-N-Roll" at the Montgomery Zoo on September 24th, 2011.  Walk-N-Roll is an event that benefits the Spina Bifida Association.  The Spina Bifida Association is an organization that promotes awareness, research, and is an advocate for people living with spina bifida.  As someone who knew nothing about spina bifida, I truly believe in this organization.  Most people that we have encountered have heard of spina bifida but don't know what it is.  If you would like to join our team and help us raise money or simply sponsor either Matt or I, we would greatly appreciate it!  Of course, you are also welcome to walk with us at the zoo too!  Use the link below and follow the directions to donate online.

http://www.sbaofal.org/

1. Click on the "Walk-N-Roll" icon
2. Click on "Sponsor Walker or Roller" or "Register Here."
3. If you are sponsoring just type in one of our names.  If you are joining our team to help us raise money, you will need to follow the prompts to join "Team Josh."


When we first found out about Joshua's spina bifida, we were heartbroken.  However, we can now say that God has brought more blessing in our lives through this than anything else.  Thank-you everyone for how you've supported us.  This experience would not be the same without all of you!

Home



I realized he was smiling after I took the picture!  He loves his great-grandma!







Oh how I have longed to write this...it's time to go home.  On Monday we were moved into a room with Josh.  This is our preparation for going home.  We have been taking care of him ourselves.  The nurses are available if we need them.  We are happy for this time to transition. 

Joshua had a sleep study on Sunday night.  It was a follow-up from his study four weeks ago.  They said that he had improvement from his last study but he still had periods of apnea.  Therefore, they are sending him home on a monitor.  He'll have to wear it while he's sleeping.  A loud alarm will go off anytime he stops breathing for a certain period of time. 



His new splint!





 

Also, he has a splint that he will be wearing at different intervals throughout the day.  Since his right foot is slightly deformed, the splint will be used to loosen the muscles and help reposition his foot. 



We must say, we will miss the people here.  It was bittersweet leaving the NICU to go to our room.  It means progress and finally being together as a family.  With that being said, we will miss our new friends.  Joshua has gotten wonderful care and the staff is absolutely amazing.  It has been hard to leave Joshua every night and periodically throughout the day but knowing he was getting exceptional care helped us sleep at night. 





We're excited to be going home tomorrow.  It seems surreal.  After being here for 48 days, it's time.  Today was our first full day with him.  We spend a majority of it holding him and playing with him.  We're making up for lost time!  We'll be coming back next week for a follow-up appointment in which they will do another ultrasound to check his ventricles.  Joshua will continue to have peiodic appointments throughout this upcoming year.  Please continue to check our blog.  Joshua's story is not done yet!

--Kim, Matt, and Josh (finally!!!)









This wasn't a small victory, it was huge!

Stress is what started this day.  We were already stressed thinking about the upcoming ultrasound.  The nurses had stopped feeding Josh at 4am in case he had to go to the operating room for a shunt.  When we walked into the NICU, we could hear him crying from the door.  He was miserable.  To further complicate his misery, the central line, which is what they implanted in his chest to substitute for an IV line, came loose during the course of the night.  They noticed that his entire blanket was wet after his IV fluids (for the possible surgery) were started.  His chest looked swollen and sore.  The surgeon from the operating room had to come up to pull the line.  However, he needed to have an x-ray to make sure it was really out of place.  After the x-ray, the surgeon pulled the line.  Then finally the ultrasound technician came up to do the ultrasound.  The little guy hadn’t eaten for seven hours, was given a bedside x-ray, and had a tube pulled out of his chest.  Keeping him still for the ultrasound seemed like it would be harder than it actually was.  After the ultrasound tech finally left, it was a waiting game.

About an hour later, Matt and I were changing Joshua’s diaper when I looked up and our nurse was on the phone.  She came over to us with a smile on her face and tears in her eyes. She heard from neurosurgery and they told her that the ultrasound showed that his ventricles were normal and that they were going to begin transitioning us to go home.  We were overjoyed and can’t believe we’ll be going home shortly.  On Sunday they will do a sleep study on Joshua since his last sleep study showed that had some apnea.  On Monday he will do another ultrasound to make sure everything is okay before letting us leave.  We will spend the night with him in a room at the hospital and probably end up leaving on Tuesday or Wednesday.  We’ll be going back to the doctor every Monday so that they can do an ultrasound to check his ventricles.  There are many reasons that we don’t want Joshua to have a shunt but here are the cold hard facts: 80 – 90% of kids with spina bifida get a shunt.  After getting a shunt, it usually will fail or become infected within the first 6 months.  On average, they need to be modified 2 to 3 times before a child is 18 years old.  Typically if a child needs a shunt, it will show in the first 7 days.  After that it’s most likely to occur within the first month.  If you make it out of the first month, the chances reduce drastically again.  If you make it out of the first year, the chances are much smaller yet. 

Today was a huge victory!  I can’t believe our time has finally come.  We felt like we were perpetually “2 weeks away” but finally the end is in sight.  It felt hopeless towards the middle of the process.  I think back to when the CSF was leaking out of his incision 11 days after the initial closure.  The doctor felt at that point that he needed to put the shunt in, but in the operating room the CSF was slightly cloudy so he wanted to send it to the lab to make sure it wasn’t infected. That’s when the neurosurgeon put the first catheter in his head.  A few days later, they figured out that the two ventricles weren’t communicating so they added an additional drain.  All of these things prevented the shunt from going in right away.  We know that God is and has been doing something spectacular.  We needed to persevere.  It’s not to say that Joshua won’t need a shunt, but we have high hopes. 

Big day!

We rush around every morning hoping to get to the hospital as soon as the NICU opens.  Of course when we're there on time, Josh's neurosurgeon doesn't come until 11am.  When we're 15 minutes late, he has already stopped by!  We waited for a while for the ultrasound tech to get there and do the ultrasound on Joshua's head.  As soon as she finished, she brought the results to neurosurgery.  As you can imagine, we were on pins and needles waiting to hear what his doctor had to say!  He finally got there at about noon and said that everything looked great!  It brings tears to my eyes as I recall his words.  Joshua's ventricles were slightly enlarged but still looked normal!  They are going to check them again early on Friday morning.  The great news is that if they still look the same size, they will probably send us home this weekend!

On Thursday, we will have been here for 6 weeks.  It seems like a lifetime ago since I delivered.  Never would I have guessed that we would still be here.  We can hardly wait for Joshua to hear the sounds of a car, see the room we've created for him, and many other things.  We are thrilled with the idea that we could be going home soon.  It's been a long journey but we're almost there! 

More changes

Two days ago when I was holding Joshua, I felt a drip on my hand.  Matt at the same time noticed that his dressing on his head was wet.  The nurse paged neurosurgery to come and take a look.  The nurse practitioner from neurosurgery came up.  She took the dressing off of his head.  She poked and prodded around the area where the catheter comes out and wasn’t able to find anything dripping.  Her opinion was that it was fine.  Matt and I left shortly after that because the NICU was closing.  When we got back to the Ronald McDonald House, Joshua’s nurse called to tell us that they had noticed that no fluid was dripping from the catheter into the drain.  Therefore they took him down for a CT scan.  When neurosurgery looked at the CT scan they found that the just the tip of the catheter was still in his ventricle, but it had pulled out 2 centimeters.  They just wanted to watch for any other changes. 

The next two shifts only collected 5 mL and 7 mL.  In one shift they usually collect 20 mL.  When Joshua’s neurosurgeon came the next day, he told us that he wanted to take the catheter out.  He didn’t feel like it was doing anything for him anymore and his white blood count had spiked for the second time in 3 days.  At this point, the catheter had more risk than reward.  Another doctor pulled the catheter and stitched up the opening.  This is a little sooner than our doctor originally had wanted unfortunately.  During these next 24 – 48 hours we’re going to be watching to see if CSF is leaking from either his incision on his back or from the area on his head that was stitched. 

We need some extra prayer while we wait and see what happens.  We’re continuing to be positive and hopeful!

One month old!

Not much has changed this past week, which is great!  Since Joshua’s surgery, the doctor has been monitoring his back for any changes.  We’re hoping that the wound continues to slowly fill in.  The doctor is taking it one day at a time, which means that we still don’t know when we’ll be going home.  He wants to be very conservative which we are in favor of also.

It’s been fun to see Joshua growing.  It’s so crazy to watch how much he is changing.  Since he has been on his stomach for 5 weeks now, he has got so much neck control.  He definitely favors laying on his right side.  Anytime we move it to the left, he almost immediately moves it back on the right side again.

Fortunately we were able to go home last weekend for a military formal and Matt’s graduation.  He will not have to worry about school for a while, at least until it starts again in July!  Let’s hope that we’re not still here!