Monday, April 29, 2013

Not always good news.

So let's start with the not-so-fun news. Last Friday, April 26, Emri went in for a routine lung and heart appointment at Seattle Children's. This was the first of both checkups since spine surgery in December. Emri's lungs look and sound terrific! This is something to celebrate as terrific lungs do not always go along with having marfan syndrome, especially with Emri's severity. We were doing cartwheels in our heads hearing the doctor say that her lungs just seem to be doing excellent. Another moment worthy of celebrating came when we found out that Emri is actually ON THE WEIGHT CURVE! Emri has NEVER been on the charts for weight...ever. She has always been the little arrow at the bottom of the chart indicating that she is below the 2% mark in the weight category. Now, we do know that Emri's rods and screws in her back weigh about 10 oz, and that her clothes added a smidgen of weight also...but hey...we'll take the 7% and run with it! As for height-Emri now joins those over 100%. She is one tall, skinny glass of fun! After meeting with  the pulmonologist, we met with nutrition to discuss Emri's tube feeding, and decided to cut one tube feeding out of Emri's "feeding regimen" in order to attempt more table food consumption. This was happy news for me and especially Emri because it means more freedom from the tube she has to push or carry around while playing throughout the day...(also less "DocMcStuffins" :). After the nutrition consult we headed to cardio for Emri's echo. We are so thankful that Emri has been so cooperative for every single echo she has gone through-she just lays there, so patiently, and lets the ultra sound technician do her/his thing. Just so glad that we have not had to take part in a sedated echo up to this point. I don't know many other near 3-year-olds that would just sit there and not move for 30-40 minutes. While the echo took place I happened to look up at the screen and catch a glimpse of a number that I was so hoping was not her aorta measurement. We headed to our "favorite" room when the echo was finished-the cardio consult room. This room holds so many memories...great ones and horrifying ones. We never know what sort of memory we will be making as we walk through those all-too-familiar doors. Our cardiologist came in shortly after we got there started the small talk of how Emri was doing in all the other areas of her life. After a few minutes I finally just said, "her aorta's bigger, isn't it?" " seems to have grown." Another moment when my heart literally starts beating out of my chest, I feel like I can't swallow properly, immediately begin to sweat...etc... I glanced over at Emri---big smile of course, flirting with the oblivious to the fact that we are talking about her serious heart condition. I just couldn't love that girl more. She's so much braver than I will ever be.
Emri's cardiologist promised to email Dietz to get his take on everything...we exchanged pleasantries, and left. There are always tears after these kind of devastating appointments..and so many thoughts. Bad thoughts, terrifying thoughts, shudder-worthy thoughts...And then comes the desire to hug my sweet baby girl and NEVER, EVER let go...ever. Once again...we are ceaselessly reminded of the fragility of our precious little Emri's life. "Bless my little girl, God...bless my sweet little girl." How many times have I prayed this prayer? It's always the prayer that comes when I have no choice but to hand it all over to God. He knows the desires of my heart...He has allowed me to love this girl as much as I do...He knows. "Just bless her God."
This morning I received an email from our dearly loved Dr. Dietz. He reassured me of the fact that this jump in Emri's aortic root measurement could definitely be from the stress of spinal surgery combined with the one or two days Emri missed her medication due to blood pressure issues during and after her surgery. He did say that he has seen this before accompanying surgery. Emri's aortic root has not reached "surgery zone" measurement-wise...but it has grown very quickly in a short period of time...which is an additional reason that surgery is sometimes performed on the aortic root. Dr. Dietz ordered an increase in Emri's irbesartan dosage and a repeat echo in two months, which we already have scheduled. If you are one of Emri's many prayer warriors, please ask our merciful Savior, if it is inside His will, that we have a stable report in two months. Dr. Dietz ended his email to me with, "I remain very hopeful, and so should you." Couldn't help but smile wide...all 15 times that I read it. "Thank you Lord for this reassuring piece of's all in YOUR hands and we know that...thank you."
Abe. Abe is 6 months old today!! Such a blessing of a little dude. This kid gets to be more fun every single day. He is SUCH a sweet, loving little (or huge actually) snuggler and brings our family so much joy! His smile melts my heart...It's so amazing how much I already love this kid. He is working on sitting up, and finds his way around a room weather it be by rolling or inch-worming---he's inventive that way. I am sure sitting and crawling will be here soon, but as of now, I am enjoying every second of him still being my baby boy. He also LOVES his sister-all she has to do is knee-walk past him and he lights up. Emri is also very fond of her little brother. She enjoys advocating for Abe by telling me things like, "Mom...Abee is too yiddle to say hi to you." And she says these things so matter-of-factly. Like, "Mom...common'..he's obviously still a baby." Emri always grows very concerned when Abe is upset and lets me know that I need to feed him, or that "he must just be tired and need to sweep a yiddle bit." I am trying to soak in every moment of this babies growing up together and becoming close siblings. It's just a precious time.
Next order of business. I got a 4-hour-a-week job at Brett's place of employment. JWR Design needed some help keeping up on their new website, facebook page, and blog and thought I might be interested in helping out. It is the perfect amount of time for me to take a little break from kid world and be involved in the grown-up world.
Also, we are SO close to digging the hole to start our house! It's pretty strange that we will officially be watching walls go up so soon! We have been enjoying the process of designing our next home and feel so blessed and only slightly overwhelmed at the prospect of having to make so many decisions in a very short amount of time. If I can get myself organized enough I will be posting pictures and updating facebook and this blog as our house goes up. Our lot is pictured down below.

Last bit of fun news...Emri has officially qualified for a therapy dog! We decided to apply for a therapy dog a few months ago to help Emri not only with physical tasks (open doors, turn on lights, pick up dropped objects, help her up if she falls, pull wheelchair if needed...etc) but also for emotional support as she grows older and more aware of her disease. We are waiting to be matched with a dog-which could take a bit because we need a dog calm enough not to knock Emri over. We are ok with waiting a while since we won't even be in our house until fall. We are so excited that this opportunity came up and that Emri will get to be a part of such an amazing program. It was also interesting to find out that at the Marfan conference this year, there is a new workshop titled, "Canines can help!" Brett and I look forward to attending this workshop.
I...I think that's it for now. I hope this finds you all well...and thank you once again to all of you who take the time to keep up on this blog and to those of you praying for our family. We serve an amazing God. ~Erin~

Here are some pictures of lately...