Friday, March 25, 2011

Spring brings....more appointments!

Yes, I am happy to have spring here and winter left in the dust...or mud for us Washingtonians. The flowers are blooming the sun is occasionally shining and the birds are singing-it's a beautiful thing! With spring has sprung a flurry of activity for our family. My Beppe (grandma) had a hip replacement and is recovering well. God willing she will be home this coming Monday! Because of the surgery my Aunt Hilly and Stephanie came home for their Spring breaks! It was fun to see Steph for a bit and my Aunt Hilly is here for another week to take care of my Beppe. Emri and I have been making frequent stops by the nursing home to check up on Beppe and keep Aunt Hilly company.
Besides all of the surgery excitement, we have been busy with appointment after appointment with Emri. Emri had her FIRST little cold in her 9 months of life a few weeks ago and came out of it great. We took her to the doctor just to make sure her lungs were clear and they were. Besides a few rough nights of sleep and losing a little weight Emri handled the cold marvelously. With Emri's latest rash and first cold I have had frequent phone conversations with nurse Kim and we have seen Dr. Bochsler more than a few times! I can't even tell you how blessed we feel to have them taking care of Emri. Kim puts up with my frequent and frantic phone calls and Dr. Bochsler has made time to see Emri any time anything comes up. As Emri's mom, it's a relief to have a Christian nurse and doctor that care so much about my little girl.
We had 3 appointments at Children's last week Tuesday. Emri had a repeat swallow study done to once again check for aspiration, and then saw her OT and Pulmonologist. Stephanie was able to go to Seattle with us, which was SO nice! I don't know if I could go through one of these Seattle Children's days alone!
For the swallow study, they attempted to make Emri swallow barium in order to be able to see where the liquid goes in her throat. Emri was not too intrigued with this whole barium gig and only gave them three swallows to work with. They did not find any aspiration which made everyone very happy.
Next we saw Emri's Occupational therapist, Karen, whom we LOVE and adore. Karen sat in on the swallow study and carried Emri from radiology on the 4th floor to the OT clinic on the 5th floor. Emri was exhausted from fighting the barium at her swallow study and was laying on Karen's s shoulder the whole time. It was very sweet and Karen, a lover of babies, was in her heaven. Emri did great in her OT session and Karen was impressed with her improvement in gross moter skills. She gave us a long list of things to practice with Emri in order to strengthen her muscles and get her closer to sitting up and crawling.
After OT, we ate a quick lunch and headed to Pulmonary. It was a quick appointment and the Pulmonologist was happy with how Emri looked and sounded. At the end of the appointment she fit us in with a nutricianalist  who re-evaluated Emri's calorie intake and made necessary adjustments to get her weight up. Emri is now a whopping 13lbs, 13.5oz....what a fatty.
A week after our day at Children's we had the dreaded SLEEP STUDY...yuck. We headed up to Children's at 7:00 Monday night and checked into our "hotel room" in the hospital. The pulmonologist wanted this study done to get a baseline read of Emri's sleeping stats for the future. Marfan kids usually have narrower breathing airways and I guess it becomes a concern as they get older. When Emri was all pooped out and ready for bed, the nurse came in with the wires....all 26 of them. Honestly, it was the most pathetic, sad state I have ever seen Emri in. I thought the NICU was bad, but this was a whole different ball game. there were about 17 wires attatched to Emri's head, and the rest were spread out over her body. She had two belts on to hold down the wires and one large monitor belted to her stomach. When the wires on her head were in place, the nurse wrapped Emri's head with pre-wrap and put a "hat" over that. The final touch was the oxygen monitor in her nose. It was AWFUL and heart wrenching to watch this being done. The nurse kept saying she couldn't believe how well Emri was reacting to all of the wires, because most babies go hysterical. There was one point where Emri looked up at me, her face turning red, and her eyes tearing, but she never made a peep. She just sat there and let the nurse do her thing. When I picked Emri up for a picture at the end, she SMILED! I couldn't believe it. I can tell you what I wouldn't be doing if this were happening to me....smiling.
The night was long with little sleep for Brett, no sleep for me, and interrupted, frustrating sleep for Emri. In the morning the nurse said that they got the information they needed and we were free to go. We were ready to get out of there.
Thursday Emri had a very uneventful eye appointment. The doc said her prescription looked good and that she should come back in 4 months.
Later today, I will get Emri's blood drawn to make sure her body is responding well to the final losartan dose increase. Fun fun. Oh! And I think the first tooth is coming through!!
SO-there you have the latest. Thank you to all those who continue to pray for Emri and our little family.  Emri's a special little girl and very loved. We are so blessed. I will update again soon, but for now, I think a nap is in order. Goodnight.


Wednesday, March 9, 2011

rainy days.

You know...there are days that aren't so bright. I am writing this blog for the purpose of revealing that there are times, many times, where my spirit is weakened and my fearful, daunting, and sinful thoughts get the best of me. I am always able to be lifted out of the fog thanks to my wonderful family, my supportive husband, and my beautiful Savior, but the point of this post is that the fog exists.
I know every parent deals with the "what if's" but it is a bit of a different story when the "what if's" are closer to being "if's". I'll confess that I still think about what my life would be like if Emri left us, because the truth of the matter is that Emri IS more fragile than other kids. She doesn't have the same strong muscles, straight spine and healthy tissue that other kids do. She has weak muscles, a crooked, bent spine, and connective tissue that continues to stretch in places it shouldn't. Emri won't be able to play competitive sports, or even participate in many PE classes. Emri will most likely face surgery way before most kids even know what the word "surgery" means.
When connecting with other parents on "marfan connect", I have inevitably run across sites of those who have lost their child due to complications of marfan syndrome. It's scary to see a little girl go into surgery and not make it. It's frightening to see all the things that can go wrong even when marfan kids are being properly treated. It's terrifying to know that we, as Emri's parents, are her advocates, researchers, and care givers. Many times it frightens me that I am the one in charge of giving Emri her medication 5 different times a day. It terrifies me to know that I am the one person who knows Emri the best, and if something would happen, it would be completely out of my control to do anything for her or about the situation.
See, it always comes full circle when that word "control" crosses my mind because I know that this situation IS out of my control in God's hands. This is when I remember that God promises to never give you a situation you can't handle and that HE knows the best for his believers. I know all this, but I fall, I fail, and I cry. I cry thinking about the other moms and dads who have lost their little girl or boy to marfan. I cry when I see the video of the sweet little girl that looks so much like Emri and know that she is no longer on this Earth. I see how much her parents miss her and it hurts my heart. I cry when I think too much about all of the hardships Emri will have to face with her physical health. I cry looking at Emri and thinking that some day she is going to realize she is different than the other kids in her class and that she can't do all of the same things they can. I get angry when I think about all the people who are going to make judgements about Emri before they even take the chance to understand her. I do cry, I do get angry, and I do fail at putting my full trust in God. This is the fog. But you know, despite the fog, I know the sun is always there. God is my strength, HE is my rock. Without HIM there would be no hope, no sun.