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.


Daniel and Rachel said...

I can't imagine the emotional roller coster you've been on this week!! Praise God for allowing Landon's RV to grow!! Our God is the Great Physician!!! :)

I would agree with all the pictures I've seen of Landon he looks perfect. Even those pictures you just posted of his head....I can't really see how it looks much different that any other baby! I don't know your Ped but she sounds like she might not be the best person for you to have to deal with....I've dealt with a couple Peds like that with our girls, and Daniel always has to remind me that I'M their mom, and I know them better than anyone else, so I can't always rely on the opinions of someone who just spent 5 minutes with them. I know that technically they know SOOOOOO much more than I do, but I KNOW my girls, and my instincts have often proven right even tho I've had to argue the point with a Ped for awhile first. :) Just hang in there....don't let this get you down. If God can make Landon's RV grow, he can straighten out his head, too (IF there's anything wrong in the first place!!). :) HUGS!!

All in a Day said...

That's some good news about his RV!!! :)