Friday, September 28, 2012

Gummy Bear

We had our ultrasound on Wednesday for Gummy Bear and everything looks great. My doctor wants me to come back next Tuesday and get another ultrasound with the specialist just because of all my complications with Mia. So we'll get another sneak peak next week of our little Gummy Bear...and speaking of which...Gummy Bear is a Brother! We are excited. Now the challenge to find a name... :)

Wednesday, September 26, 2012

Surgery

We finally got the results back from the urodynamics test in Cincinnati. It showed that there is a suspicion of neurogenic involvement in her bladder. Lots of big words, but what it means is that her bladder isn't functioning normally and her tethered cord could be contributing to that. So we met with a neurosurgeon at CHLA yesterday and he agreed that we should do surgery to release her tethered cord in order to prevent any further damage to her bladder. There is a minimal chance that function could be restored, he said he would not promise to restore any function, but it would prevent further disfunction. We know, however, that if God is willing and so desires that He can restore function to Mia's bladder and we are praying so. He's taken her so far and we've seen so many miracles that we know if it happens it is totally from Him. So, we scheduled her surgery for next week Friday (10/5). Please be praying for everything to go smoothly, there are risks of damage associated with doing any surgery on your spinal cord, pray that there would be no complications. That she would heal well, apparently she'll be on her tummy for the first day and then possibly her back the second, but it will require her to be flat for an extended period of time...pray that goes smoothly. We will keep you updated as we get closer. I had kind of a rough day yesterday trying to process everything, thinking to myself, what more Lord? How will we work through this? But then the people around me reminded me that God is in control and He will help us to work through all of this in whatever manner He chooses...healing her and restoring function or not and that's ok. We hope and pray that it is the act of restoring function, but we trust God for his plan for Mia's life. Thank you for praying for her!

Friday, September 21, 2012

Going Home!

We have reached the end of our time in Cincinnati and are ready to come home. Its been a long week and a half, but life changing is a great word to describe it. Before we came here Mia would have multiple bowel movements a day, very frequent...for the first time in her life she has 1 bowel movement each day. Do you know how freeing that is? I'm still slightly in awe that we are here. We can now move on to potty training for urine. This is a big step for us. Praise God for this! We learned quite a bit from Urology, however we still haven't got the results from a urodynamics study that was done on Monday. Hopefully they will be able to inform us on Monday. This is a critical piece of information because it is one of the possible reasons to correct her tethered cord. So we met with the neurosurgeon yesterday and depending on that test determines whether or not he thinks she needs to have her tethered cord fixed now or if it can wait. If it comes back normal, then he would recommend not fixing her cord immediately, just watching and waiting for an indicator that it needs to be done. However if it come back showing neurologically it should be repaired, then he would say to absolutely do it now. Really important information that we don't have. We leave tomorrow and are excited to come home. Pray for a smooth trip, catching our connection and overall good experience with the kids. Thank you for all your prayers! We are so blessed that you all continue to pray for our little girl! Thank you Lord for a great week!

Friday, September 14, 2012

So Glad We Came

We arrived in Cincinatti on Wednesday. Everything went smoothly with our flight and we arrived safely to our hotel. We ended up getting to bed rather late and then had to be up early for testing for Mia the next day. We managed to survive, though. And she did really well with her first big day. Thank you for praying! Today we met with the different doctors about her testing and we are feeling full of knowledge, some good and some bad, but everything was good to find out. The GI specialist we saw, who has been doing this for year and is really the best of the best gave us a hopeful prognosis for Mia. He thinks that she has the potential to potty train and we are going to follow his process to get us there. We also met with Urology and we found out that Mia has some mild reflux which means she is at a higher risk for a kidney infection. It could either be related to her stroke or to her tethered cord...so they are running another test on her on Monday to determine more of that info. We also found out we have an appointment with Neurosurgery on Thursday about her tethered cord which is a huge praise because I was told it was impossible to get in, thank you for praying! We know the praise and glory belong to God for this. A busy day, but lots of valuable information. Now we are going to try and do something fun this weekend and relax. :)

Friday, September 07, 2012

1 down 1 to go

So CHLA finally called me back and we have an appointment scheduled the end of Sept for Mia.  It actually works out perfectly because we will be in Ohio for a week and a half and when we get back, a few days later we have our appointment.

I ended up having to overnight Mia's MRI to Cincinnati Children's and they told me that it would be 5 days before they got back to me after they received it.  That means I should hear by next week Friday, when we will already be there, and hopefully they can work us in the following week when we are there.  Praying praying praying that it works out.  Would love to hear what they have to say since they see so many kids with her issues as it is.  We'll just trust God's plan for this one.

Thank you for all of those praying, we know that we can't do this without God and we know that through Him all things are possible!

Wednesday, September 05, 2012

More Medical Stuff

So today we went to LA to for an echo and an appointment with Mia's cardiologist.  Everything looked great, her heart has been stable since surgery and so at this point they've recommended we stretch our visit to every 15 months instead of every year.  Sounds good to me!  Praise God for a great report. 

Trying to get Mia into seeing a neurosurgeon is like a camel trying to go through the eye of a needle...at least that's what it feels like at this point.  I constantly am reminding myself that I am my child's advocate and nobody else cares as much for my child (besides God) as I do and this is important and I have to fight for it.  At least that's what it feels like these days.  So, we'll start with California and move on to Ohio...

Last week Thursday Mia's pediatric surgeon's office faxed a referral for her to see a neurosurgeon at CHLA.  I was hoping to get this scheduled before we leave for Cincinnati, which is next week Wednesday.  Well, I've been following up with them every day and they keep telling me they've been short staffed and haven't been able to get through all their faxes yet.  Well, finally today someone looked through the pile and said they hadn't received the fax yet....ahhh!  So, I call UCLA, have them re-fax it and yes, it finally arrived, they hope to have an answer for me tomorrow. 

Now Ohio...I called our nurse from the Bowel Management program we are attending and asked her if they could get us an appointment with neurosurgery and she said it was out of the question because they need a referral and testing from urology before they will take a tethered cord consult.  We will be seeing urology and doing the testing but apparently the answers won't come back soon enough for them to refer us.  Well, I decided to take matters into my own hands because I am my child's advocate (again I remind myself this daily...) and I called neurosurgery today, explained the situation, how we are from out of state and there is a tiny window of opportunity for us to see them is at all possible????  Sure, if we have a referral from some doctor...any doctor?  Yes, any doctor.  Great, so I had Mia's pediatric surgeon fax them the info as a referral and I will be calling them tomorrow morning to see about getting an appointment.  I asked the guy on the phone if it was even remotely possible to get in so soon because we will only be there a limited time and he told me "anything is possible."  So pray please.  Pray that we would miraculously get an appointment to have a consult with them while we are there. 
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