Friday, June 27, 2014

In the recovery phase

So, last month was a doozy! As June comes to an end we are thankful to say so far so good! After four surgeries and multiple admissions in May we are happy to say June has been way less eventful. We have however had many follow-ups and changes with Blake since all these shunt malfunctions. Blake had an MRI done which when compared to the MRI we had back November look almost similar with only slight differences noticed in ventricle size. (After all Blake's been through we expected their to be more than just a slight enlargement) our neurosurgeon seems very happy with the progress he has made.

Blake also had his eyes examined- The appointment actually went great because Blake fell asleep during the dilation of his pupils part and decided he was going to sleep through the WHOLE thing! They wanted to get his eyes examined shortly after his hospitalization because of his past laser surgery on both eyes and the pressure that can be put on the vessels during a shunt malfunction. The Optamologist dilated his eyes and then checked his vessels, prescription, and his retinas to make sure no damage was done....and Blake passed with flying colors. His eye doctor says he has a slight astigmatism but nothing that requires glasses.

Blake was also seen for multiple ultrasounds regarding the large pocket of CSF fluid in his belly. The size has decreased from 13x9cm to 7x5 which is a good thing. However, that does mean because his stomach is not absorbing the fluid quickly Blake's shunt will probably never be able to be placed back into his abdominal cavity. Because of this he will just unfortunately, have to have several lengthening surgeries done to his shunt until he stops growing. Which is slightly upsetting- no momma or daddy wants to sit through more surgeries than they have to!

As far as developmentally a few changes have happened. We were told Blake would most likely regress quite a bit and have to relearn how to do the activities he was doing prior to all the surgeries. Our son had different plans though. He has been doing wonderful! Our developmental pediatrician has now upped his Valium to help with his muscle tone in his left side but is very impressed with his progress. They are a little concerned with his weight loss and would like us to "fatten" all his foods and drinks up to help him have a steady weight gain over the next few months. (Prior to the first surgery when we got to Riley Blake weighed 24 pounds by the time we left June 2nd he was down to 19lbs 7oz---this week we weighed 21 lbs even) it's a start!

Blake is soaring trough therapy these days- he is walking (yes you read right) walking well with his gait trainer- he is now pulling up to stand on all our furniture and in his crib! We have never been so proud and excited for this new chapter in his toddlerhood! (Is that a word? Toddlerhood? Eh- if it's not you get my point!) I look forward to the day Blake can get around and run with all his other friends- it's something I dream often of!

All in all Blake is just as always a miracle! He is such a trooper and makes Zach and I so proud on a daily basis! Where he gets his strength and perseverance I have no clue but he is amazing as always!!

Oh and of course I forgot to mention in earlier post- cousin IT has retired and Blake is now a stylin' little boy rocking his new hair due!

Sunday, June 15, 2014

Happy Daddy Day!

Not all men could deal with the stress that Zach has endured over the past 2+ years. He was a rock through my high risk pregnancy- and my constant ever changing mood (I don't think it's necessarily just with pregnancy). He was amazing and loving after having our super awesome, super small babies. But it was then having to say goodbye to Conor that I first saw the true father Zach was. He was compassionate, dedicated, loving, gracious, caring, and protective. He transformed right before my eyes from a 28 year old care free, funny guy that everyone wanted to be friends with into a completely love stricken father....all within two seconds. And that has never gone away. Zach continues to show his dedication to being a father from the therapies, medications, learning what in the world certain labs and medical procedures mean- so he can ask the right questions, to hospitalizations, learning to be a good dad without sleeping (what's sleep?) and the list goes on and on and on! Zach is the pure definition of an amazing father. He has fully stepped into his 'daddy' shoes without hesitation. He is always the one to rush to Blake's side if he is crying, he immediately can calm a frazzled mommy, and he can always get Blake giggling....he can even do a pretty rock solid 'hot dog' dance!

Happy Fathers Day to the most amazing father I know---and the cutest too! Love you babe!

Friday, June 13, 2014

Double trouble.

Just kidding about Blake having an ear infection.....he actually has a DOUBLE ear infection! On top of a respiratory bug! At least he is in good spirits now that he is back home from a day of procedures and labs at the hospital!

Blake all cuddled up watching frozen!

Finally knocked out while waiting for his ultrasound this afternoon.

He had one eye open the entire time to make sure no one messed with him....he isn't so trusting these days!

Now back home and getting into everything!

Tuesday, June 10, 2014

Gray Hairs.

Well...we've now been home for 8 days! Blake has been doing well- Zach and I on the other hand are going to worry ourselves to death. Every movement, every new noise, every cough we jump and rush to Blake's side! I'm sure he is super tired of our over protective supervision lately. But just as I thought maybe I was being crazy, Blake stopped peeing, developed a nice raspy cough and started pooping all kinds of strange. So today Zach took him to the doctor to settle our gut wrenching, 'worried parents of a sick child' stomach pains. And lo and behold- Blake has a rather severe ear infection. This child of mine is going to give me gray hair, and a heart attack before I'm 30- I'm just sure of it! But as always...who would have known....because Blake is such a tough guy he never lets anyone know something is up. He is all smiles, super playful and acting exactly as he always does. So a round of antibiotics and, as long as he stays how he is now he can stay home and avoid the hospital! Let's just cross out fingers, legs, and toes this time.

Broken hearts.

It's funny looking through the eyes of my youth. By all means I am not old, I am only 27 but my heart feels so much older.

Looking back through my eyes when I was 6 I remember thinking, "Nothing could be harder than this. I do not want to move. I have friends here. No one will like me at the new school. This is the worst day of my life- nothing could be worse than this!"

Looking back through my eyes when I was 12 I remember thinking, "Nothing could be worse than this! I can't believe I didn't make the team! This is the worst day of my life-nothing could be worse than this!"

Looking back through my eyes when I was 14 I remember thinking, "Nothing could be harder than this. Why do my parents have to get a divorce? This is the worst day of my life. This breaks my heart."

Looking back through my eyes when I was 15 I remember thinking, "Nothing could be harder than this. Why did he have to break up with me? Why does he not love me? This is the worst day of my life- This had completely broken my heart." This, again, was nothing.

From being 18 and fighting with a boyfriend, or being 21 and moving away from home, losing a grandparent, losing touch with best friends, these all heartbreaking moments in life are nothing. They are mere bumps that every single person experiences in their lives. It's heartbreak, and learning to grow from each of these experiences. But nothing, and I mean nothing prepares you for the lose of a child. Nothing prepares you for the being a parent to a sick child. Nothing in comparison is as heartbreaking. My heart feels older than 27. It has more holes, more cracks in it than it should. At 24 I lost my son as he gained his angel wings. And I thought.... "Nothing could be worse than this. Why would you give him life just to take it away so swiftly? This is the worst day of my life. My heart is broken." This still rings true. That was the most single handed worst days of my life.

And my heart continues to break for the twin that I do get to spend my life with. It breaks with every hospital admission, every surgery Blake has. Not only did we lose one son, our other is constantly fighting something, defying some odd. He is being poked on, looked at, listened too. Instead of jumping in mud puddles- he is stretching- he is exerting every ounce of energy he has into therapy. Instead of telling people un-understandable stories he must try and communicate by pointing or using sounds- most of the time giving up in frustration as we can't figure it out. Instead of spending this spring running, climbing and playing outside. We have been hospitalized- four surgeries in and still haven't the clue what keeps causing his shunt to malfunction. In a perfect world I would tell you we deal with it and life isn't that hard we just do what we have to do- but in the real world I'll tell you---it sucks! Blake struggles, he gets sicker than most children, he can't do the things most two year olds can...and I'm not ashamed to say that sometimes as a mother being around children younger or even the same age as Blake that can do things he can't is frustrating. It's not selfish to want your child to have the best life- mostly I want it for him because I can see how much he wants it. I see the frustration, the fight in him- it's one of the main reasons Blake is where he is today. Because he is strong! Because he is determined! But as a mother I just wish it came easy to him. I want to take the hurt away. I want to take the constant medical care away and give him a normal childhood. It's heartbreaking. It's making me look back into the eyes of my 0-25 year old self and think how silly my heart breaks were before kids. How little I knew about what real heartbreak was.

Thursday, June 5, 2014

So far-So good.

All is well in the Hargis household. Blake has adjusted well and is back to his normal routine. Blake had done well in therapy with very little set backs. I will admit he is a bit weaker than usual and tires quicker than he used to.... But he hasn't lost his determination that's for sure! He is also back to babbling...he is saying more ooo's and ahhs again something that was for sure lost with his shunt malfunctions. And momma has never sounded so good!

Zach and I are still a bit on edge, jumping at every sudden movement, every cough. We are constantly waiting for the other shoe to drop- which could explain why we've yet to move our packed Riley bags from my car to the house. But everyday past the hospital admission the easier it gets. Just hoping it stays that way...and we see more of our home this June than we did in May!

Tuesday, June 3, 2014

Miracle Ride for Riley Kids

The miracle ride for Riley kids is a foundation that has raised more than 4.1 million dollars for Riley. This year alone they raised $300,000+! This is such a touching experience to witness as a mother of a Riley child. Over 4,000 bikers ride down Riley hospital drive for all to see in honor of these special kids having spend time away from home in the hospital! This is the second year Zach and I have witnessed the ride. The first year was in 2012 when blake was in the NICU fighting for his life. We woke up to it at the Ronald McDonald house and were so confused. It was such an awesome site to see all these bikers driving through the hospital campus- but we had no idea the reason. We did some research and were utterly astounded by the amount of money this foundation raises and the pure generosity of people! This year we just happened to be in the hospital again for the ride but this time blake was able to enjoy the experience with us! We were touched by all the bikers who came out to ride and it was such a wonderful and powerful thing to watch during such a tough stay. We even were given a special dog named "bear" to watch over by one of the bikers, who specifically pulled over to give it to blake! Brought tears to our whole family! The pure compassion these bikers have for these little ones is amazing! Here are some pictures during the ride that we were able to capture!

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