Wednesday, February 23, 2011

No back brace and a lovely new rash...

So for those of you wondering what exactly happened at the back brace appointment, I am here to tell you. We saw Doctor Song at the Bellevue Children's branch of Orthopedics. This is the doctor that Dr. Sponseller (Baltimore Orthopedic doc) recommended for us. Dr. Song was great and we absorbed a lot of knowledge about Emri's scoliosis from him. He made it known that he is a believer in being minimally invasive and commented that the goal for Emri was to have her brace/surgery free until after she was 10 years old. This could be potentially very difficult depending on the severity of her scoliosis. Dr. Song told us he wanted to do a "traction" x-ray on Emri to which I replied "alrighty, what's that?" He went on to explain that a traction x-ray is when you take an x-ray of a patient laying down and stretched out. This way, a doctor can get a patients back curvature at the best possible degree. When a traction x-ray is done consistently every 6 months, it is possible to really observe how the patients back is progressing. When we were in Baltimore, the only x-ray we received was one where Emri was sitting, supported by me. This x-ray showed a curvature of 17 degrees. In Emri's traction x-ray, her back was at 13.8 degrees. Dr. Song was pleasantly surprised by the 13.8. He made it clear that a back brace was unnecessary until her back gets much worse. Dr. Song did mention the significance of monitoring Emri's back very closely as she grows. Without monitoring it, we have no way of knowing how much the scoliosis has progressed and if it does progress too far without surgical intervention, it could impede on the growth of her lungs which can affect the span of her life. It is also important that we attempt to delay surgery as much as we can because if a surgery would be done with Emri still growing, she would have to be operated on every time she would have a growth spurt which obviously is not good for a child (anesthesia too often isn't good for a kid). SO-that's the story on the brace.
As for the rash...uhg. Over the past two days Emri has developed quite the rash for herself. It started as red ears and moved to a big red spot on the back of her neck. After 15 minutes of freaking out about the big red spot I began noticing little red spots appearing on her arms, which slowly turned into BIG red spots and as of today are consuming her arms, legs and face. She also has some very swollen hands and feet. She has been to her pediatrician, Dr. Bochsler, twice, has been reported to the good old Dr. Dietz, and it remains quite a mystery as to what this rash is. One of the things it COULD be is a reaction to Emri's new dose of losartan, which is beyond my understanding because she started the new dose 10 days ago. It could also be some sort of virus or an allergic reaction to something besides losartan. We are hoping it is one of the later. If Emri reacts to losartan, it would mean that she most likely would not tolerate any sort of ARB which would be such a nightmare. I feel as if Emri's body has been reacting well to losartan. She has gained 5 oz. in 5 days, which is something she has never done and my wishful thinking is saying it's the losartan taking it's effect on her! I am praying so hard that this has nothing to do with the meds. Throughout all of this, Emri remains happy as a lark. She may look like a horrible version of Bob the tomato, but she is a happy little tomato none the less. She is smiling through it all and doesn't seem to understand why she is getting all of the extra attention! PRAY that this rash is not a result of the losartan, that she gets over it fast, and that we never see it again!!! I hope this blog helped everyone feel up to date. Thank you for all of the concern already expressed. Hugs to all. ~erin~

Monday, February 7, 2011

Our sweet little friends

Our 8 month journey with our sweet little Emri has led us to connect with a few people in very similar situations. Since we have been so very blessed by so many of you supporting us in prayer, I thought it would be great to be able to introduce a couple of precious friends that could use prayer as well. 
Our first friends' name is Brody. I have never even met Brody, but the pictures and videos I have seen of him make it hard not to fall in love. Brody and Emri are in a very similar situation and it has been SO relieving to be able to connect with his mom and discuss anything and everything.  We have been through so many similar emotions and it has been such a blessing to be able to connect. His mom and I even think our little ones look quite similar-it has been fun to compare pictures:) Brody is also on losartan and doing pretty well after a few very scary episodes. He just got glasses, so him and Emri are officially glasses twins. Here are just some of the facebook statuses from Brody's mom in the past few months...

"Brody is getting life flighted by helicopter to ku med- his heart rate got a little crazy. Please continue with prayers for our lil man"

"Had a scare last night- his heart rate soared to 280 when chris was just sitting holding him. Nurses and doctors rushed in and splashed ice water on his face and gave him medications which he did not like! It happened again at some point during the night but went down on it's own after 2 seconds. Now waiting to do an echo to see if that will tell us anything....."

Brody has recovered from his scary experience and is doing well on the medication he was put on. He has an echo this Thursday to see where his heart is at. But as you can see, Brody and his family have been through quite the journey as well. He is such a precious little boy and we just pray that God watches over him and gives his parents the same peace that Brett and I have been granted through this all.

Danny is another little boy that has touched our hearts. Danny is from the UK and was also born with marfans. He has been such a trooper with everything he has had to deal with! The size of Danny's aorta is that of a 7-year-old and he has diaphram eventration causing his liver to be pulled up into his chest and his heart and left lung to be pushed to the left. His left lung is also underdeveloped. He has scholiosis, eye problems and mild mitral valve leakage just like Emri. Lately he has been in the hospital for lung issues and has had to deal with a feeding tube, which his mom mentioned he didn't appreciate too much. Danny has completely captured my heart. His mom just emailed Dr. Dietz and she (and us) are waiting in eager anticipation to see what he has to say. 

If you happen to be reading this and have been keeping Emri in your thoughts and prayers, please add Brody and Danny to them as well. These two little ones are inspiring to say in the least. Their moms have been a huge support for me and are two very brave and wonderful women. Pray with us.