June 30, 2009

(this was posted on facebook last night in case you may have seen it there)
I just wanted to send out an update on Noah. Some of you may or not know that Noah had surgery today...shunt revision. It has been a very long process getting to this point. Many months of vomiting, feeling sick and cranky, visits to the doctor and specialists ranging from Neuro-Surgeon, Neurologists, GI Specialist, Allergist to Ophthalmology...we have seen them all. Lots of long days in the car going back and forth trying to figure this out. In the past month Noah has had 3 hospital stays...including this one. We are currently at DC Children'sNational Medical Center. When we got here, more than ever before we were certain there was something wrong with his shunt. Yesterday they decided to tap his shunt...similar to a spinal tap they go right into the shunt. The result was bittersweet. The tap did not draw any fluid, which meant something was wrong with the shunt, which meant surgery (the bitter), which meant this was the answer that we had been praying for (the sweet) to all the vomiting, sickness and crankiness over the past several months.
Today, Noah's surgery was a success. They were able to get in and out fairly quickly and remove the old shunt and install the new one without having to adjust the tubing that drains the fluid from his head into his tummy. There were no major complications during the process. Noah is currently sitting up (somewhat) in his bed, watching Kung Fu Panda (for about the 20th time since we arrived here) and eating his 8th cracker (its all he wants and he gets whatever he wants right about now). Assuming all goes well tonight and after a clear CT Scan, we will most likely get to go home tomorrow.
Kayla has been just wonderful. She seemed very concerned for her big brother through out this process. Every time someone would come to adjust some wiring or mess with Noah, she would be straining her neck to check it out...almost as if making sure no one was hurting her big brother. It was very sweet to witness her concern in her own baby way. God's hand has been on Noah and all of us through out this process and we are so grateful to him for finally revealing the root of this problem. We are looking forward to many days without vomiting and I would be happy to never see a specialist or hospital again...where my kids are concerned.
Thank you all so much for your prayers. We have definitely felt them through out this. God has been so faithful...even in my very weak moments as a mommy watching my son go through this time in his life. We are so grateful that he has blessed both our children with very sweet spirits...especially for Kayla to be a baby and still manage to be so content with all these hospital stays and driving back and forth.
Thank you also SO MUCH for all the encouraging emails, FB messages and phone calls. It has really kept us strong and helped us get through this...we have the greatest friends and family that anyone could have. We are truly blessed!
Love and blessings back at ya!

Peace be to you, and love joined in faith, from God the Father and the Lord Jesus Christ. Grace (God's undeserved favor) be with you all who love our Lord Jesus Christ with undying and incorruptible love. Amen
Ephesians 6:23-24
Erin Wright

June 1, 2009

What's Happening?

Hi Everyone! 
First and foremost Kevin and I want to thank all of you SO MUCH for how you all banded together recently to lift up our son in prayer.  I have been told that the prayers went out all over this country for him and I must say...we DEFINITELY felt the prayers and saw how quickly God moved on behalf of our lil man!  It never ceases to amaze me how quickly our brothers and sisters in Christ will come together for us when we need them most.
As most of you know Noah has been having episodes of vomiting for the past several months and throughout this time we have been back and forth to several doctors to try and figure out what is going on.  At first, we were told he is just suffering from stomach flu and being a child in school with an already weak immune system we just have to let it run its course.  Ok, we'll except that for the first 2 times, but going on 3 and 4 and 5, I just knew it was something more than that.  So Kevin and I started to mark his episodes on the calendar and we very quickly noticed a pattern of every 2 weeks for 3 - 4 hours in the morning, every 20 to 30 minutes.  Then the last of the vomiting would taper off around 11am or noon and he would be completely fine for the rest of the day.  Eating, playing, acting as if he hadn't just spent the morning vomiting.  In the past couple months Kevin did some research on-line and found something called Cyclic Vomiting Syndrome (CVS) and it sounded very similar to what Noah was experiencing.  The "scheduled" vomiting (making it cyclical), the associated pain and then all of a sudden fine as if nothing had happened.  So we printed it out and took it to Noah's pediatrician.  Unfortunately, CVS isn't something easily diagnosed.  There is no simple test to diagnose it.  They basically have to test for everything else and once everything else is ruled out, they diagnose whats going on with CVS.  So Noah's PED sent us down to UVA (our home away from home) to see a GI Specialist (Dr. Barnes).
Upon seeing Dr. Barnes he also mentioned the CVS, but had to rule out some other things first.  So he sent us home to do a "clean-out" that weekend of Noah's bowels.  This resulted in Noah becoming very sick again.  Dr. Barnes suggested we get a shunt work-up for Noah because the episodes seemed to be coming on my frequently.  So upon his next vomiting episode, which was this past Monday, we contacted Noah's Pediatrician and took Noah in to get a shunt work-up done.  This consisted of a CT scan of his brain as well as an x-ray.  The work-up proved to be inconclusive.  His Ped said it looked as if his 4th ventricle was slightly larger than the last scan we did, a year ago and he suggested we contact Noah's neurosurgeon.  Being that it was a Holiday we waited till Tuesday to contact them.
On Tuesday morning I was on my way home from Kayla's PT appointment when I got a call from Noah's school that he wasn't feeling well and that they had him lying down with a pillow and blanket.  So I contacted Children's Hospital and they suggested I go ahead and bring him in that day with his scans from the day before.  So I had to go back to the Winchester Hospital to pick up the scans and as I was doing that I received a call from Noah's school again that he had started vomiting, had a seizure and stopped breathing for a couple seconds, but that he was breathing again and on his way to the local hospital.  I was at least 40 minutes away from Noah and I knew that Kevin was even further.  As panic set in, I just began to cry out to God.  I prayed for protection over my son, for God to breathe his PERFECT breath of life into my son and for Him to help me calm down so I could drive and get to my son safely. 
Once at the hospital I wasn't getting any clear answers about what happened and even the doctor just seemed completely out of sorts (in the 2 times I have been to this hospital, this seemed to be the way these doctors "work"...not good).  I must say though, on behalf of Noah's teacher's and school...they were amazing and I am so grateful to them for helping to take care of Noah in the best way they knew how.  I think they handled the situation completely professionally and it is very evident how much they love those children they work with...including my son.
Noah was flown to DC Children's where they ran a BUNCH of tests, scans and everything you can think of to try and figure out what was going on.  We saw Noah's neuro-surgeon who soon ruled out any shunt malfunction.  PRAISE JESUS!  He said Noah's ventricles looked fine and that the shunt appeared to be functioning properly.  We also saw a neurologist and had an EEG done.  The EEG showed no seizure activity and the neurologist believes the seizure was a result of the dehydration and stress from the episode he had.  We also saw a GI specialist while we were there and between her and the neurologist, they both strongly believe Noah has CVS, especially considering my family history with migraines (CVS is of the migraine family).  There are still a couple more out-patient tests they would like to have done to rule out any other scenario, but they are currently treating him for CVS.  Noah will have to see a neurologist on a regular basis and have just a couple more visits with his GI Specialist.
So in hopes of ending this novel I have written and let you all go on about your day...I just want you to know how much Kevin and I appreciate and love you all.  Your support and prayers last week really kept us 'afloat'...and not just last week, we realize its been on-going.  Sometimes I wonder if its ok to continue to ask for prayer support as much as we do...as if one has a limit on how much prayer they can ask for.  It really blesses us that you all continue to pray for us and with us and continue to befriend us through it all...that you haven't given up on us.
Much love and MANY BLESSINGS to you.
Kevin, Erin, Noah and Kayla
Jeremiah 29:11