Thursday, July 12, 2012

Today's appointments among other things...

Well lets start with today. Today was...draining. We arrived at Children's for what we were told (by a scheduler) was an appointment to insert an NG tube. We weighed Emri...she lost weight...big surprise. We waited for a good 20 minutes before a GI counselor came in to simply "council" us on our feeding tube options. We learned quite quickly that we were not in fact receiving the actual tube and that the process itself includes an all night stay in the hospital. SO, after working myself up for a good two weeks thinking this would be the day that we shoved a tube up Emri's nose and down her throat...nothing happened. Instead of Emri leaving the GI clinic screaming and thrashing about as I imagined, she left grinning sheepishly, stickers in hand. You might think that this would make Brett and I happy, which in some ways, it did...but we both feel like this process has dragged on long enough. We have dealt with an arrogant, assuming, non-kid-friendly GI doctor, scheduling mishaps, and way too many mis-communications between doctors and coordinators and we are ready to move on and get this all over with. The GI counselor very appropriately used the phrase "too many cooks in the kitchen". After learning more about the processes of "tube installation" and recalling the discussions with other marf moms that I have talked to about their experiences, Brett and I made the decision to skip the whole NG tube trial, and go straight to the G tube. If you do not know the difference, an NG tube goes up the nose and down the throat, and a G tube is inserted directly into the stomach. In the next few weeks we will be spending 1-3 nights at Children's getting this whole process over with. The hope with putting in this tube is that Emri is able to gain an appropriate amount of weight before her spine surgery coming up in the next while.

With that, lets move to Emri's spine x-rays.After waiting over an hour for the pediatric orthopedist to grace us with his presence, we finally learned that Emri's scoliosis curve remained nearly the same as 3 months ago. Unexpected? Yes. Good? Yes. Confusing? Slightly. We will be going over this all with Emri's orthopedic surgeon at the Marfan conference in August and will be scheduling the surgery based on that consultation. We have already informed him of the fact that we are due for baby #2 in November and he said he would most definitely work around kind:) We have no idea what Emri's kyphosis (Bump sticking out on her back) curve is looking like as they "forgot" to get an x-ray of it we will not know for sure if that curve has gotten any worse until the next set of x-rays.

Later this month Emri will be completing a lung function test in which she is sedated and put in a box to read all of her "lung levels". This is to get a base line read of how her lungs are functioning before surgery. Then after surgery we will need to repeat the test and see if there is any difference in function. Our pulmonologist thought that Emri's breathing has sped up a bit as of late, which could potentially be a sign of lung restriction due to her pectus and/or kyphoscoliosis. Got a call from a nurse the other day warning me that the drugs they use to sedate these kids tends to make them irritable, grouchy and off-balance for a few DAYS...should be fun!

That's most of the medical news for now. I apologize, only mostly sincerely, for my perhaps less than sunny disposition tonight, but I must admit that having the "correct" attitude has been nothing less than a struggle for me lately. I have thought more times than once about how much I would love to just whisk Emri away for while and not let anyone touch her. No poking, no evaluating, no bracing, no therapy, nothing...just for a while. A break from it all. I just want her to get to be a kid---laugh, play, be free... you know??? But when I do the whole "step back and look" thing, I know that all of these people poking, prodding, and consistently evaluating Emri are doing it for her good...and without them, Emri may not even be here. I need to focus on that. I need to remember that this is God's will for her life and that she is a strong, brave little girl, always smiling, always loving life and always inspiring others...including me. These are the things I must think about. We are blessed beyond anything I could ever imagine to be Emri's parents...but just like any parent who loves their child with everything they have...I just can't stand to see her suffer.

I know another mom that knows more about watching her child suffer than I do! Danny, our brave little Marfan friend in the UK recently survived major heart surgery! Not only did he survive it, but a week after the surgery he was home and thriving! What a trooper! This kid and his mom are a constant inspiration to me. We are SO happy that Danny is doing exceptionally well, proving so many doctors wrong! We are very much looking forward to finally meeting him and his mom at the conference in a few short weeks!!

I am now 23 weeks pregnant with baby number two and if you haven't already heard it is a BOY!!! We were thrilled to find out a few weeks ago that we are in fact expecting a baby brother for Emri. I am feeling awesome compared to my last pregnancy and can't wait to meet this munchkin in October or November. I think Emri may understand more than we know. Every time I pull up my shirt and tell her to kiss her little brother, she politely says "NO!!!" and pulls my shirt back down as quickly as she can manage. It will for sure be an interesting experience to see Emri adjust to her big sister role:)

The last bit of news I wanted to share, most of you already know. On June 8, our sweet little Emri turned 2. This was not just any birthday...this was the birthday we were told she had a 5% chance of making it to!!! It was a tad bit surreal thinking about the journey we have been on with Emri in the past two years. Remembering the day Emri was born, and all of the events in between then and now...seeing how God has shaped and molded us as a family. Nothing could have prepared Brett and I for the experiences Emri would bring us, but God was and continues to be with us every step of the way, always reminding us that HIS will be done. I made a little birthday video that if you have facebook, you most likely have already seen. But for anyone who missed it, here is the link 

I am guessing the next blog will be after our much anticipated Marfan conference in Chicago. We leave August 1 and return August 7. Prayers for safety for us and all of those traveling to get to this conference would be so appreciated! Thank you to all who continue to write messages of encouragement, and to those who have always kept us in their prayers. It means more than you know. Love from here to there, Erin.