Monday, August 31, 2009
Saturday, August 29, 2009
Saturday, August 22, 2009
In June we took the boys to the Indianapolis Airshow. When we visited the Aviation Museum in Pensacola, FL, the boys became enamored with the Blue Angels. We figured this would be a fun thing to take them too. Although it was really HOT, we had a great time.
Sunday, May 3, 2009
Luke and Malachi walking their bikes back after finishing the race.
Friday, May 1, 2009
Logan: You missed Him.
Me: God was here…in our house?
L: Yep, you missed Him.
Me: Well nuts, I would’ve liked to say hello to Him!
L: He didn’t come here to see you Mom…He came to see me.
Me: What for?
L: He came to tell me that Jesus loves me.
(I played along and baited him a little…)
Me: How do you know Jesus loves you?
L: (slightly irritated at the stupidity of my question) Because He told me!...and the Bible tells me so! He also told me to get ready.
Me: For what?
L: Because I’m going to Heaven in 100 days.
Me: Oh! How exciting!
L: (very matter-of-factly) It really is Mom.
Me: Are you going by yourself? (I was worried a little.)
L: No-you and Daddy, Lukas, all my grandmas and grandpas and their moms and dads are coming with me.
L: So what’s for lunch Mom?
Sunday, March 29, 2009
Wednesday, March 18, 2009
Thursday, March 12, 2009
Friday, March 6, 2009
Monday, February 23, 2009
Sunday, February 8, 2009
Two years ago today, we were pacing the halls of Sutter Memorial Hospital in Sacramento, CA. We were surrounded by family and friends. And in our minds and hearts, we were in prayer. Our baby boy was in the operating room, under-going his third open heart surgery in just his first short 17 months of life. I remember waking up that morning with the song "I Am" by Mark Schultz in my head. (I think God likes to communicate with me that way from time to time). I prayed those words from that song all day. It hardly seems like 2 years has gone by. You would never know today, watching Logan run and bounce and jam on his drums and guitar, that he was born with a broken heart. It's easier to see, now looking back, the plans that God had for our lives. I remember it feeling so incredibly over whelming. But you know, not once did Nate and I look up and ask why? It just was what it was and we are so extremely blessed having been through that journey and continuing on it still today. I've learned so much about myself and what I'm capable of. I've learned a deeper love and appreciation for my husband. And most of all, I've learned just how much God cares for us and how awesome we are as His creation. Logan is so amazing. I really don't have words to describe what it has been like to have the honor of being his mother.
A little update on our current situation: The boys and I met with their new pediatrician on Friday. He was so nice and Luke and Logan really liked him. The staff was very friendly and it seems like a good "fit" for us. I also learned that Riley Children's cardiologists come up to Fort Wayne once a month for their cardiac clinic right there in the same office! They have a cardiac clinic coordinator that handles all the referrals (which we need prior to seeing those docs for every visit/procedure) and she works there in the same office as well. We've decided not to give Logan the medication that was suggested by Dr. Ghazali and have scheduled him with a Riley cardiologist in May. I'm not sure why no one mentioned this to me earlier but hey...all in God's perfect timing! What a BIG answer to prayer. God is so good!
The definition of perspective is "a mental view or outlook; the relationship of aspects of a subject to each other or to a whole". And if I've gained any perspective at all thus far, it is that God is saying, "Be still and know that I Am."
Tuesday, February 3, 2009
Anyway, Dr. Ghazali did call me back on Monday and we recapped everything. Then I asked if he wouldn't mind sending a copy of his echo report to our previous cardiologist in Sacto? He said he would but wondered why? I told him my reservations about starting Logan back on the blood pressure medication and I was just curious why our previous dr didn't recommend the same plan of care. WELL...he said all the "PC" things but the tone in his voice said he was certainly bothered. Then he asked me to write down a number -which I did- then told me that was the number for Riley Children's Hospital cardiologists in Indianapolis and that it would be better if we continued Logan's care with them instead! What!?? Yep, that's right...he fired us! He said he didn't want us to constantly second guess his opinion on Logan's care and continually refer back to our previous dr for advise and that it would be best for everyone if we saw someone else. I couldn't believe it, but on the other hand, I'm more than happy to move on based on that reaction over a simple question! I explained to him that we just met him and he just met Logan and that we have an established relationship with our previous dr. And the fact that the plan of care was so completely opposite of what we were on prior to moving here that we just wanted to have as much knowledge of this situation as possible before making a decision on whether to put Logan back on medication that may or may not even help at this point. He "respectfully" accepted my concern but didn't want to address it. He took the *RETREAT!* plan of action and headed for the hills instead! Oh well. It's just as well this way. But now I have the task of starting over...again.
P.S. Dr. Fallah called back also and said that he didn't feel the medication was to Logan's advantage at this point. He reminded me of the side effects that Logan had while on this med before (as if I forgot!) and stated that it was his opinion that it wouldn't benefit him to be on it at this point. Yes, his aortic valve is leaking (which we knew is was since the day they put it in) but that his body was handling the leak well at this point and so why medicate until it's necessary? ...Thank you!
Friday, January 30, 2009
Well, Logan had a cardiologist appointment yesterday. We received some information that we’re not sure we’re comfortable with just yet. I have put in a call to his previous cardiologist in Sacramento and after talking things over with him, we’ll decide what’s best. (After typing that out…it sounds so simple. I wish it were that…but it’s anything BUT simple in my mind.)
Clinically, Logan looks great. We all know that! The little guy has always ‘looked’ great, even in heart failure! So that’s a positive and we know that he handles his health condition remarkably. His pulmonary valve and conduit (the one they replaced in Sacto almost 2 years ago now) looks wonderful. It’s handling its position well and Logan’s immune system has decided it likes this one much better than the last, so that’s good!
The part we’re not sure of is that his new cardiologist, Dr. Ghazali, feels that he needs to be put back on Enalapril. This is an ace inhibitor medication used to control his blood pressures. After reviewing the echo from yesterday and comparing it to the previous echoes from Sacto, he feels that Logan is having a gradual enough increase in the pressures in his aortic valve to constitute medication. He reassured us that we are nowhere near ready to talk about replacement; however, it’s more about preserving this valve as long as possible. The better they control the blood pressure leaking through that valve, the better they protect it and preserve it. With this reasoning, we agree.
What we are unsure of is that this has never been an issue brought to our attention until now. I have no frame of reference or scale, to determine the numbers given to us over the course of the last 3 visits. So we’re unable to make an educated decision on whether it’s time to medicate him versus waiting another 6 months, which he also gave us as an option. This is one question that I’ll be asking Dr. Fallah when I speak with him today. Replacing his aortic valve was something we knew would be happening eventually, however it was perceived to be something to deal with in his adulthood. I plan on consulting with his previous surgeon, Dr. Mainwaring regarding this topic. Mostly to gain perspective and additional education on the possibilities and options concerning this area of his heart. I read through the previous echo reports and all that was noted was that the “mild leakage” was something to watch closely. He never mentioned it out loud to us. At least not in a way that was cause for concern. So basically, I’m just looking for reassurance that this is the correct step to take now. It would make us feel more comfortable hearing it from someone who has followed Logan most of his life rather someone we just met. I’m not excited about putting him back on that stuff. I saw such a different baby when he was taken off of it. But if it’s what he needs, then that’s we’ll have to do. Please pray with us for peace and clarity in this next decision we need to make.
Wednesday, January 28, 2009
And today marks the eve of Logan’s first cardiologist appointment…in a new town with a new doctor. She talked about how, in intimate relationships, we deeply feel our loved ones struggles and concerns. We also share deeply with their conquests and joys. Logan is my youngest child. From the moment he was born I have felt deeply all of his joys and all of his struggles. And yet there is nothing I can do to ‘fix’ his problems or ease his struggles. As another 6 month appt looms, the nervousness starts to creep in. Will this be another stellar report or will this be one of the ones where they tell us his heart is declining again? My brother is also going through some struggles right now that I can’t seem to pray hard enough for and I certainly can’t ‘fix’ his problems or ease his concerns either. This leads me to the most intimate of all relationships. The one I have with Jesus. I’m so grateful to have Him to turn to when my heart aches for my loves ones or fills over with joy in their conquests.
So today I’m talking to Him about my nervousness, my concern for my son’s health and the sick feeling in my stomach for my brother. I’m also talking with Him about the joy that my sons bring me, the way they make me laugh everyday. I’m thanking Him that my husband has a stable job and that we always seem to have just enough money to get by. I’m thanking Him for the relationship with my brother and sister-in-law, that they feel comfortable sharing their lives intimately with me. I’m hoping for a little grace today for my anxiety over all these things and I’m praying for some for my brother’s anxiousness as well.
Relationships are funny things. They can cause us so much joy and so much grief. But most importantly they cause us to feel. Just to have the opportunity to love people through whatever life’s challenges. This greater purpose is so worth it! To steal a quote from one of Logan’s former doctors: Do not let the fear of what if…rob you of the joy of what is”.
Thursday, January 22, 2009
What do you get when you have LOTS of snow, a "warming trend", EXTREMELY cold weather and then finally a temperature above freezing? Some seriously long and scary looking icicles! I've also come to realize how the presence of the sun can give you an almost euphoric feeling. I don't care that it's only 34 degrees outside...when the sun's out, it may as well be 75 degrees in my book. (Minus the capri's and flip flops!) I totally took the sun for granted living in California. After all, they don't call it "sunny California" for nothing. Apparently the sun and Indiana have a love hate relationship because they don't see each other much. However, absence makes the heart grow fonder!
Monday, January 19, 2009
Wednesday, January 14, 2009
**UPDATE** Nap time did wonders and the wind stopped long enough to play in the back for a while. See attached photos and video clip! :)
Monday, January 5, 2009
In other medical news…I think I have found a worthy candidate for Logan’s cardiologist. Today I shamelessly tagged along with a friend of mine to her daughter’s cardiologist appointment with the hopes of meeting this guy and seeing his facility sort of incognito. At the end of her appointment my friend kind of ‘outted’ me a bit and I had to spill the beans. He was so gracious and took more than enough time to answer some questions and assured me that he would love to meet Logan and that it would be an honor to be his care provider. He also sealed the deal on the “pediatrician fence” that I’ve been sitting on so it was sort of a two-for-one deal today! We now have our first official cardio appointment set for January 29th.
Here are a few pictures of the boys from Christmas. We had a wonderful time with the Maier side of the family this year. The visit from Grandma and Grandpa might have made things a little bit harder for Logan. But these new drums from Santa make a nice distraction!
Friday, January 2, 2009
P.S. For those of you who are about to email me about taking my child back into that place…I assure you that I am in the process of finding him a doctor in the closest large city from here. (A 45 minute drive I was hoping to avoid but most definitely willing to make!) Nate’s insurance is changing and we’re waiting on our new cards. I have narrowed down the search to a very prominent and highly recommended practice near a credited children’s hospital. We’re just trying to decide on “who” in the practice will get the pleasure of caring for our littlest Maier!