Friday, August 31, 2012

Pointless ramblings of a stay-at-home student

I should be studying and yet here I am.

Oh blog how I have missed you. It is not the same between us anymore. I can no longer visit you without guilt relentlessly trying to pull me back to the tab that holds my homework and the deadlines that are closing in on me. I knew it would be this way, but I did not know that by the time I had to return to school, you blog, and the journey that you hold, would have completely ruined the love I once had for marking up textbooks and writing lengthy discussion boards that would make my classmates marvel at the "research" I put into them. There's a word I've come to despise. RESEARCH! Oh how you want so much of my time. Do you not understand that I have other researching to do?? Like the way Landon has started to claw into the back of my arm when I'm holding him. It is so painfully adorable that I just have to scream, usually I do too. Or how he gets his mouth going and words (we'll call them that) will start flowing out. The look on his face is priceless. He is so surprised that he is doing this, but he doesn't seem to know how to stop so he just keeps going and he gets faster and faster until it all crescendo's in the highest pitched squeal you have ever heard. I LOVE IT!! Or how he has figured out that I will always be there to help him so why do it himself. He lays on the floor, but the only way he likes to roll to his side is if he can hold tight to my finger and I pull him over. I know I should probably be making him do most of the work on his own, but who could resist him when he sticks his little hand out and tells me with his eyes, "Mama, I need you." AHHHH melt my heart!!!! So sorry research, you were fun for a while, but there is just no way you can compete with that.

Not to mention how when I lay him down to play while I try to get something done, whenever I look up from my book or laptop I have two blue eyes staring a hole into me, begging me to come lay beside him. It's truly on the verge of being creepy how he watches me nonstop... creepy in a good way though :)

Resist those eyes? Not possible!

In all seriousness, I had no idea it would feel like this. This constant pull. This feeling of guilt that I get when I am doing school rather then laying on the floor soaking in every moment with Landon while he is still in all of his 4 monthness. This stage is coming to a fast approaching end and then I will have a whole new stage of 5 monthness to sink my fingers into all the while wondering if I cherished every moment of him in his last 3 month outfits or when he was content to just lay in my arms without wanting to try out his newly discovered feet. I am finding like every mother does, that it goes WAY to stinkin fast. I want a pause button, but I know I would never use it. As much as I may say I wish I could stop time, I just wouldn't be able to do it, because the excitement that comes with watching him discover, learn, and grow is irreplaceable. I would not change anything...except this fear that I have of missing something because my head is stuck in a textbook, or hearing the laughter comeing from the living room when I'm stuck in the bedroom working on an assignment. You may be screaming, "Get over yourself! At least you get to stay home!" I'm not offended, I've screamed it at myself a million times in my head. I'm hoping though that what I'm sharing strikes a cord with countless other mama's out there. This is just my situation, you may be working when your heart longs to be home with your kiddos, or you may be spending the majority of your time in the confinement of a real classroom, or maybe your job requires you to travel, whatever it is, it's hard. It is massively hard to bring these tiny creatures into this world, only to have the doctor hand your husband scissors, silently say "life must go on" and then the cord is cut. You can no longer, ever again, spend ever waking moment with this child. I think that is partly why this seems to be so much harder on mothers. They were as much a part of us as our very heart for 9 months, now we're expected to leave them at daycare or with a babysitter, or in my case, to occupy themselves for an hour by staring at a singing light while you study algebra. COME ON!! I just want to hold him 24/7 again, to get lost in his baby smell that can only be described as a mixture of pure heaven...with a hint of dry crusty spit up that's been hiding in the roles of his neck for days. But when I am with him, I feel like I'm not fully present because I'm thinking about the long list of unchecked assignments that need to be done in a couple days. It's enough to drive a girl crazy!

Starring down my pile of textbooks... grimace.

what I want to be doing...

What I end up doing... notice baby pushing away book.

I wish I could end this post with a solution to the constant pulling between reality and the little miracle that wants and deserves all of my attention, but I don't have it. All I can do is pray that I will pass the classes I'm taking this year. Pray that I can stay awake to work on school after I put my miracle to bed at night. All I can do is pray that when the future becomes today I will have no regrets. If it means sacrificing the best grade for some time of laying on the bed and staring up at the ceiling fan with my boy then so be it.

Wednesday, August 22, 2012

Abnormal Perfection

We got back from our trip to Minneapolis last night. We had such a great time! I can't explain how wonderful it was to take a trip as a family. Some of the highlights from our trip included...

Stopping at Park Rapids on our way to the Cities to watch my dad run a half marathon.

Way to go grandpa!!

Figuring out how to change a blowout diaper in the confinement of the back seat. I have never loved my husband more :) If it grosses you out, I apologize, but it's our life and this is my blog ;)

Ryan: "Landon this is not the time to learn how to roll!" hahaha

Watching Landon sleeping and thinking about how far we have come since the last time we drove those roads.

                                         April 24                                               August 19

Same little love bug, just with an extra chin now :)

My Mom and Aunt watched Landon so Ryan and I could enjoy a night on the city.

 Our view from outside our hotel!

Landon was such a good baby while we were gone and we were so happy to get back to him in the morning. Before we left for his appointment we took him outside and played in the yard. The verdict is still out on what he thinks of grass.

He had a great time and loved being coddled and loved by everyone. 

We went to his geneticist appointment on Monday not knowing what to expect. I was amazed at how many memories came back just from driving around, but then when we actually parked and walked into Amplatz it was like daja vu. The sounds and the smells... everything, the water faucets. You don't realize how everything is engraved in you until you go back to a place where you have experienced such strong emotions and trauma. That building became our home and held our heart for almost a month. I was surprised by the sudden urge I had to take Landon and get out of there. Even with how nice the interior is and the good experiences we had with the doctors there, it was not a place we wanted to be and I definitely felt the strong desire to be able to leave with my family again. 

This time was different though. We did not need to take a picture for our access badges, we did not go to the 4th floor and walk the halls of the PICU again. No, not this time. We went up to a floor we had never been at, checked in and had a short wait before we were called back into a room.

Soon a young man came in and told us that he is a med student studying under Dr. Calhoun. He sat down and told us that he has done his homework on Landon. I was comforted by that statement until we had to correct him and pretty much tell him everything about Landon's medical history. He asked us every possible question about Landon's development over the last 4 and a half months. Then he went over with us what they found when they did genetic testing on Landon after he was born.

To fill you guys in, after Landon was born we were told that they found a chromosome abnormality and a geneticist wanted to speak with us before we left. We wanted to speak with the genetic counselor who diagnosed Landon, but she was unavailable on the day we were able to be discharged. So we met with someone else, who briefly explained to us that Landon has an extra piece of his chromosome 16. She told us that this disorder has not been researched for very long so they don't have very much information on it. She told us that some children with this abnormality have behavioral problems or learning disabilities, but they have also found it in some people who have developed normally. She wanted Ryan and I to get tested to see if we have the same thing. We said maybe in the future, but right now we just really want to get home. She understood and told us that because of his diagnosis Landon qualifies for early intervention and we should get him involved with an OT and a Speech Therapist when we can. We told her that we already had early intervention in place. She was pleased with that, gave me some information and let us go. We were so anxious to leave we really didn't give very much thought to the test results. A couple weeks after we got home we received a letter saying that Landon was scheduled for an appointment with a geneticist in Aug. This totally shocked us because we were told that the geneticist we wanted to see was booked until Feb. 2013. I called right away and asked if it was really necessary because we met with someone when we were there. I was told that they wanted to have a follow up appointment. So 3 months later there we were.

After the young man was finished with his assessment he left and soon after a woman came in. She was not the leading genetic counselor that we were anxious to talk to, but she wanted to know all the questions that we had for Dr. Calhoun. I was much more prepared with questions this time then last time we were there. I had done some research and found everything I could find on what we were told about Landon's 16th chromosome. Some of the things I've found have scared me so I was comforted when she explained that the extra piece on Landon's chromosome really isn't that large. She told me that although the description is the exact same it is not considered to be "Partial Trisomy 16" (which many children have died from) it is just considered a "duplication". She told us that 25 genes duplicated forming what looks like a tail on Landon's 16th chromosome. 25 duplications is considered "clinically significant" which is why they feel the need to keep an eye on Landon. Because of this duplication Landon may be more likely to have a learning disability. Kids with this have also suffered from seizures. She told us that they would really like to test Ryan and I to see if we have the same extra piece.

She then went over with us the possibility of our future children also having this disorder or also being born with a heart defect. This is when I began to get frustrated. We didn't travel 6 hours for Ryan and I to be tested and told subtly that we need to be careful because we may have another abnormal child someday (she did not use those words, but that's a mothers interpretation). I was hoping to get some solutions, but it seemed like the only reason they brought us there was so we could be their guinea pigs and it all just felt pointless to me. I was glad when she finally left so I could touch base with Ryan and see what he thought of this whole thing. He knew how I felt and as always he was ready to calm me down and help me look at the situation from a different perspective. I told him that I did NOT want to be tested. We agreed that whatever the test results showed would not deter us from having more children in the future. He told me that it may be a good thing to be tested though because then we will know that this is something we need to watch for in our future kids and if one of us has it then we wont really have to worry about Landon because chances are it wont be a problem for him either. He told me that maybe their studying Landon will help someone else down the road. "Research has to start somewhere Natalie, and although right now it seems like they are just punching the air and don't have any answers for us, maybe we could play a role in helping them get somewhere. Without someone being the "guinea pig" Landon probably wouldn't be here today." I couldn't argue with that. He told me that this appointment wasn't a waste. If nothing else, it got us out of Bismarck for a couple nights and gave us some time with our family. I agreed, then I asked him to explain the scientific stuff the woman talked about concerning genes, duplications, etc. I was wishing the whole time that I would of paid more attention in Biology, but I knew that Ryan was taking everything in. 

By the time Dr. Calhoun came in my mood was a lot better. I liked her right away. I don't know how many classes in Med school are designed to teach doctors how to make good first impressions, but it is so important. We have met doctors that lighten the darkest atmosphere with their presence and we've met some who seem to find pleasure in stealing your peace, sticking it in their white coat and exiting before you can find the words to form a question. Dr. Calhoun definitely passed the first impressions class with flying colors. She was friendly and began her time with us by talking about how much she loves her job because it allows her to work with cute babies. She went over with us Landon's history, asked some questions, and told us that it is truly astounding how well he is doing. She was amazed at how well he has grown, that he was on 30 cal formula for so long and never had any digestive problems, she said that is unheard of for kiddos on that high of cal. She also couldn't believe that he has never been sick. She told us that we are doing a great job. "He just looks like the happiest baby and he definitely isn't lacking in cuteness." With all those compliments leading the way, she went into the whole speal about how he is susceptible to learning disabilities. She went more in depth about what the results showed and told us that out of all of the cases she has studied Landon is the first one with a heart defect. She said that she doesn't believe they are correlated at all. She talked a little bit about our future children, but I think she could tell that we weren't concerned with that at all. She told us that if we want to get tested that would be great, but insurance doesn't usually cover it and it's a big bill. She pretty much told us that it's not necessary, but if we do get tested and one of us has the extra piece also then she will make the call to bag Landon's case all together. She said since we did fine, then she couldn't see why it would be a problem for Landon. She then went on to explain that if the test showed that we didn't have it, then Landon developed it somehow during utero and our future children may develop it as well. I asked her if it's frustrating for them to find people with it that have been perfectly fine. Doesn't that confuse you? She was very honest with me and told me that this kind of thing is extremely difficult to study because, like heart defects, there are many different variables that play an important role. She told us that they are just beginning to scratch the tip of the iceberg with their research of duplications of chromosome 16. "The test that we gave Landon that was able to show us his extra piece has only been around for 5 years." This is why we are so interested in Landon's development. I was really comfortable with her by now and asked her if she thought someday they would find the cause of heart defects. With a hint of excitement in her voice she told me that she really believes they will. She said she personally knows people who have devoted their entire career to finding it. "I know it wont be in the next five years, but 15-20, yeah I think it is very possible."

She doted over and made faces at Landon, listened to his heart, asked a couple more questions, including if she could stop in to see him next time she's in Bismarck visiting family. Before she left she told us that she would like to have another follow up with Landon in 6 months. We asked her if we could plan it for the same time we're there for Landon's heart and she agreed completely. We said our thank-yous and good-byes and then headed out. Ryan and I had a great conversation on the drive back to my aunts house about how, if nothing else, God used this appointment to kindle the passion we have for raising awareness and funding for research of CHDs. 

Ryan and I did not have genetic testing done, we may in the future, but it will not be to determine if we want to have more children or not.  We don't know why God allows differences or "abnormalities", but we know that God doesn't classify us by "normal" and "abnormal". Every child is fearfully and wonderfully made by Him. We don't know why He chose to make Landon's heart small and give his 16th chromosome a tail, but who are we to say what "normal" is? I have come to dislike that word completely. Do scientists classify snowflakes as normal and abnormal? No, so why do we when it comes to our children. When I was expecting Landon I had a friend ask me if we would ever have another child, without a pause I told her of course we will! She seemed to think that it would be cruel to bring another child into this world that would be different and have to face such hard challenges. I still can't understand her reasoning. I look at Landon and although I still feel sadness occasionally that he has had to experience so much pain, more than anything, I feel so blessed to have him in this world. He blesses everyone he meets and I know that God has already used him in miraculous ways. Woman are choosing to abort their babies because of the worlds obsession with "normal". It brings me to tears when I think of the countless special heart babies whose hearts were never allowed a chance in this world. If God someday gives us another child that this world will call "abnormal" then we will praise God for another perfect miracle. 

Wednesday, August 15, 2012

Letter To Myself

I wrote this in my journal this morning and thought that I would share it in celebration of this significant day.

Dear me,

It is August 15th, 2011. I know right now you are in shock. You have just taken the test and seen the two pink lines. You weren't expecting or planning for this. You never imagined you would be crying sad tears on the day you get the news that your going to be a mommy. You have so many mixed emotions right now. You want to be happy, but you can't see how this is going to work out. You are heartbroken, by the thought, that your baby knows you do not want him. By the way, it is a him. I know for the next couple months you will think and desire it to be a girl, but don't worry. God will prepare you and by the time you find out it is a boy, you will be overjoyed. Anyways back to what I was saying, he is not sad that right now you do not want him. He knows that you are having a hard day. Tomorrow you will make it up to him. You will tell him that he is your dream come true. You will sing to him and begin to dream of him (although you will still be picturing him as a girl). You will apologize for your present sadness. He will forgive you and forget about these brief moments that you have failed to love him. Starting tomorrow you will let him into your heart. You will hold nothing back from him. He will make your love grow bigger each day and as he does, you will pour it back out on him.

I know today you are scared. I know you think he will change everything and ruin your perfect, planned out world. I can tell you today that... he will. He will change absolutely everything you think you know about life and love. You will never again live in this perfect, planned out world that you have grown so comfortable in. He will change you Natalie. He will rip apart that heart you will give him, but eventually, God will give him a new heart to give to you. This heart has eyes that are willing to see. This heart, unlike the one you have beating in your chest right now, will be willing to care. It will not be burdened by your goals or your mile long to-do list. You will grow to appreciate this new heart. It will not be easy to get though. You can only receive this heart by walking a path called suffering. I know right now you think you know about this path, but I can tell you, you have no stinking clue my friend. You are not able to see this path unless you look through the eyes of your heart. If you make the mistake, like so many do, and try to see it through the eyes of your mind, you will only be disappointed. To the mind this is a horrible path and you will come to the conclusion that those who are walking it should be pitied or, worse yet, that God is punishing them. You will find that this idea could not be further from the truth. This path is located on a very long hill. It does not have beautiful scenery surrounding it. Climbing it is hard, cold, and painful. But it is so beautiful Natalie. I wish I could tell you, but I know you're not ready to understand. Just know that you have a long climb ahead of you. It will be terrifying, but it will be oh so beautiful, cherish every step.

                                                                                                      With love & understanding,
                                                                                                                        Your future self

Tuesday, August 14, 2012

Discovering the World Again

Now I know that you should never try to live through your children. Ryan and I have talked about how we don't want to push our children into things that they aren't interested in or gifted at. We believe that although God has given us this major responsibility of raising Landon, it is not our job to make him into who we want him to be. Landon is already his own person. God has placed dreams and passions in his tiny heart that are just waiting to be unleashed into reality. God wrote out Landon's life story before the beginning of time. How foolish would we be to try to be the authors of a story that has already been written?

With that said, I am finding that it is impossible not to live through your child in a sense. I see things differently when I am with Landon. I see the world as if I am seeing it for the very first time. I do not think this is a negative thing. I believe it may be one of the most abundant blessings a parent can receive. The other day I stood out on our balcony with Landon snuggled tightly to my chest. It was pouring down rain. We stood under the over hang, safely out of reach of the down pour. We could hear it pelting the roof above us, and we could see the ripples it made as it pounded the puddles that were already forming on the pavement, but we could not feel it. I told Landon how I love the rain. I told him that one day papa and I will let him run outside through the puddles. Then I took his little arm and I reached it out over the balcony, just enough for a couple rain drops to hit his skin, a couple seconds later I pulled him back to my chest. I stood there with him for another minute, just thinking, thinking about how I just witnessed him discovering rain for the first time. I don't remember feeling rain for the first time, but I will forever remember that moment.

What a gift God has given us as parents, the chance to see our world through the eyes of our children. The other day Ryan was playing with Landon. He had a ball and he would hold it above Landon, who was staring intently up at it. Ryan would then drop the ball and then catch it right before it could hit Landon. He yelled at me to come watch. He was amazed that Landon wouldn't even blink as the ball came within inches of his face. Without thinking about it, I told him it's because he has never been hit before. As soon as I said it I realized how significant that statement was. Landon has never been hit before. Even though he has gone through horrible pain that a baby should never have to experience, he still sees the world as good. He is free from the burden of cynicism that resides and grows in so many of us like a cancer. I feel this need to protect this innocence of his, but I know that I cannot. I cannot catch every ball that is going to come flying at him. He is bound to be hit someday, and he will slowly lose the beautiful trust that he has in people. Just as we are blessed to be able to introduce Landon to all of the beauty this world has to offer, we will also have to watch as he discovers the pain and evil that saturates this world. I wish it didn't have to be this way, but until we reach Heaven life is bound to be mean and unfair. We have already learned that lesson through our experiences with Landon, but for some reason, it didn't stick with him.

I watch my son and everyday I am reminded that Jesus calls me to be more like him. In Matthew 18 the disciples were arguing over which of them was the greatest. Jesus, obviously frustrated and ticked off at their arrogance, decided to teach them a lesson. "He called a child to him, and placed the child among them. and He said: Truly I tell you, unless you change and become like little children, you will never enter the kingdom of Heaven. Therefore whoever takes the lowly position of this child is the greatest in the kingdom of heaven. (Matt. 18:2-4) What I hear God speak to me through this passage is, "look at Landon, Natalie. Look at how he loves and adores you and depends on you for all of his needs. He isn't only dependent on you though, he trusts you completely. His heart is pure. Look at how he allows you to show him the world.

Even though the waters are cold and uncomfortable, he trusts that he is safe in your arms, that you wont let him go. He is not blinded by the pride of life or a heart that is too hard to feel. Come to me as he comes to you, with complete dependence, trust, and love. Don't give into the pain of this life and harden your heart to my goodness. Don't lose your curiosity of this world. Hold on tight to the wonder of my creation and my perfect plan for you.

Let me hold you and walk you through this life. You don't have to be strong, just rest in the assurance that you are my child and I will NEVER let you go.

"Do not fear for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God."                                                                
                                                                                                                           Isaiah 43:2

I want the childlike faith that my son has. I want to teach him, the beautiful redeeming truth, that even though people will fail him, that God never will. I have already started apologizing to him for all of the ways that I will disappoint him and let him down. Right now he thinks me and Ryan are perfect. He is blinded to our flaws. All he knows is that we love him and that's all he wants from us right now. Someday though, he will feel the pain of a ball that we let slide and hit his face. When that day comes I pray that he knows that he can run to his heavenly daddy, crawl up into his lap, and let Him heal his hurt. Our job as parents isn't to never fail our children; it's to make sure they know where to turn when we and the rest of the world do fail them.

Thursday, August 9, 2012

Great day and a not so great day.

It has been a BUSY week!

Tuesday we celebrated Landon turning 4 months old. It amazes me that this special child of mine has only been on this earth for 4 months. It seems like we've loved him forever and we can't remember what our life was like without him in it. Then again, I can't believe that my baby is 4 MONTHS OLD. He is growing, changing, and learning so much everyday. He loves grabbing things. His new favorite thing is standing. I can tell he is noticing everything more. He now reaches out for and plays with his stuffed toys. The other day Ryan was home for lunch and Landon was laying on the floor with his stuffed puppy. Ryan and I were cracking up because he looked like he was pounding his puppies head in the ground, but when we asked him what he was doing he just smiled big and hugged his puppy tight. Ryan said that he was practicing being a big brother haha. He brings us so much laughter and joy. He is our perfect gift from God.

Wednesday was an unbelievably busy day. It was Ryan's 21st birthday and Landon's anticipated cardiologist appointment with Fernandez. Landon and I were running around non stop the whole day. I blew up close to 50 baloons that I used to decorate the apartment. At first Landon didn't know what to think of them, but eventually he stopped screaming in terror and became curious about these strange colorful balls that were covering his play area.

We got back from a trip to the grocery store, I hauled Landon and a bag of groceries up to our apartment, set him down, put the groceries away, looked at the clock, gasped, picked him back up and hauled him back out to the car. He stayed awake again during his echo. He never cried, but I had to hold his arms down the whole time because he wanted to finger paint with the goop and help the tech move the wand around. After an hour of that we went to Dr. Fernandez's room where Landon was weighed. 14 Ibs 15 oz! So close to 15Ibs!!!! Our boy is getting big!! He is now in the 55 percentile! Quite a leap from the 3rd he was in the first couple weeks he was home. Our day got really exciting once Fernandez came in. He entered quickly and said his hello's as he sat in his chair and swiveled to look at Landon. He opened his folder in front of him and said with excitement, "his right ventricle has grown a little." I couldn't believe it! He told me that everything looks great and that indeed his RV has grown a little! He said that there is a chance he may be able to keep both of his ventricles. I kept asking questions and he had to remind me that there is no way of knowing for sure what will happen. "Things are never black & white with these kids." He said. He is going to call U of M next month and they will schedule a heart cath probably in September or early October. He said that when they do the heart cath they will be able to get a much better idea of what will be the best route to take for Landon. Fernandez is hopeful that they will just be able to take out his shunt, during the heart cath, and he will be able to keep both of his ventricles. Other options are re routing his heart so that he can use 1 and 1/2 ventricles or, if the University thinks it is best,  still do the glen surgery that will make it so Landon will not need his smaller RV and only use his left. It's a lot to take in, but after he left I just held Landon so tight and thanked Jesus over and over again. I remember the day I was told that Landon's RV was "hardly existent". Then because of much prayer, we were told after his birth that, his rv was only a little smaller than a normal one. We would eventually be told that it still wasn't quite big enough to sustain him and that it needed to grow more. Prayers have not stopped for this tiny RV and as God showed us the the other day, He is not done with it! We are filled with so much hope! We know that everything depends on how his heart cath goes, but there is a chance Landon will not need another open heart surgery! This seems too good to be true, but with Jesus, everything is possible :)

Ryan thought that Landon's news was the best birthday present EVER!!

my amazing boys!!

So that brings us to yesterday... After our great appointment with Fernandez, I was so excited for Landon's 4 month checkup with the pediatrician, but I left feeling pretty discouraged. Isn't that how it goes? God gives you an amazing answer to prayer and then the enemy goes to work trying to get you to forget about it and lose hope. We knew that Landon would most likely need a helmet to reshape the back of his head. Because he couldn't be on his tummy for six weeks after we brought him home, the back of his head became flat from laying on his back so much. We were hoping that with more tummy time it may change, but it has only gotten worse.

So I was expecting her to tell me that he needed a helmet, but I wasn't expecting her to tell me that, because of his flat head, one of his eyes sticks out more, his ears are crooked, and one of his cheeks is bigger than the other. This totally caught me off guard. Then she told me that "his muscle tone is still down, but that's to be expected after you have your chest cracked open." She seemed surprised when I told her that he only has occupational therapy every other week instead of every week. She said these things like they were no big deal and that's just what happens with a child who has a rough start like he has. She gave me a referral to a rehabilitation center where Landon will get fitted for his new helmet. She left and nurses came and gave Landon his immunizations. Then I was left with a fussy upset baby and discouragement building in my own heart. I went home, sat Landon on my lap, and looked at his ears and face, trying to see what she saw. I know that Landon's arms aren't as strong as most babies his age, but his therapist always tells me that he is right on track and doing awesome. We almost feel like he's doing so well he doesn't need therapy, but after talking with his pediatrician I was doubting all of his progress, thinking maybe we aren't doing enough for him. I was so discouraged. The amazing news we received just the day before didn't seem so awesome anymore. When Ryan got home I told him what she said and it didn't seem to phase him. He told me that his face is perfect. He told me to stop trying to see what she saw.

Up until this point we have been really happy with his pede. but after yesterday we've been praying about if she's the right person for Landon. We don't want Landon to be around people who label him as the child who had "his chest cracked" or "special needs" we're not ashamed of his story and we want him to know it, but it does NOT define who he is. We love and treat him just like we would any child, broken heart or not. He is so strong and beautiful. He has amazed all of his doctors and therapists. It took a while to let go of the discouraging words and remember that everything about our Landon is beautiful and perfect. Even his differences are beautiful. I don't know if we will change his pediatrician, but I think yesterday was a good reminder that we are the ones who are going to teach him to treat his differences as a handicap or a blessing. We all have that choice. We all have differences and unique struggles. Do we use them to justify our weak behavior, (spiritually, physically, emotionally, etc.) or do we use them to push us to make us stronger.

Our calendar is all marked up for the rest of the month. In two weeks we will be packing up Landon and heading back to Minneapolis for the first time since that beautiful day we were told we could finally take our baby home. I wish it was an appointment for his heart, but it isn't. He has an appointment with a geneticist on the 20th. I haven't mentioned it to many people because we don't know if it is anything to worry about yet, but we would greatly appreciate prayers for safe travels and wisdom for the geneticists as she runs lots of tests on our Landon.

I have planned to make this trip into an extended birthday present for my amazing husband. I booked a hotel and my mom and aunt excitedly agreed to watch Landon for a night. We've never left him overnight since our days at the Ronald McDonald house so it will be a little scary for us, but a huge blessing to be able to spend some time just the two of us and be able to go into a restaurant :O

I am also starting school that week! I really don't know how that will work with the craziness of appointments, but luckily online classes are very flexible and my professors have always been really understanding.

The day after we get back from the Cities, I have to take Landon in to get fitted for his helmet. I have been told that he will probably have to get fitted a couple times before they get it just right. The helmet will place pressure on his scalp and reshape it to make it more round. It is going to be very uncomfortable for him, poor guy :(

So there you have it. Our crazy family update. Never a dull moment in our home! It is a long hill we are walking, but knowing we have your support makes every step a little easier.