Mac-a-doodle-doo!

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Keegan Joy

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Johnny

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Johnny's Eyes- The Medical Side

For those of you who never got the full run down on what happened last month with our hospital visit. 


We took Johnny in for a routine eye checkup. He gets his eyes checked at least twice a year, both because individuals with Ds often have vision and eye related issues and because an older sister with glasses often leads to checking younger siblings too. He has been doing better about wearing his glasses most of the time and the Opthamologist was pleased with that. She took note of his change in prescription and also noted tightness in his optic nerves. She said it could be nothing or could be something we needed to look at seriously, but we should check again in two weeks. She asked a handful of questions about his eating, sleeping, and mood and left it at that. 

That night I googled. I know I shouldn't have, but I did. As I googled I kept coming across concerns about this optic nerve issue and nausea. I called a friend and asked if I should call the doctor back, knowing how hard it is to reach specialists. She encouraged me to call the pediatrician and let them make the call. I'm glad she did. 

The pediatrician on call, followed up by our regular pediatrician got the ball rolling on communication with the Opthamologist and eye clinic. Apparently the fact that he was having these random and regular bouts of throwing up was of large concern and they needed further testing immediately. We were scheduled for an MRI/MRV and spinal tap as soon as they could work is in. 

Matt and I have an amazing ability to go from normal to take care of what needs to be taken care of mode instantaneously. We immediately let people know so they we could arrange childcare and to ask for their prayers. We made back up and further back up plans. We scheduled out what needed to happen to prepare Johnny for his procedures and simply went into our very stoic/rock mode. I shed some tears, but knew that I had to be strong for my son. I'll write about the emotions another time. 

We fasted Johnny before the procedure and arrived at Texas Children's Downtown at 2 pm for everything to get started. After many questions and a check up or two, Johnny settled in for a nap on my chest while we waited for anesthesia. They gave him gas this time which I was relieved to hear. Placing an IV in Johnny for sedation has been tricky in the past and it's just easier to knock him out and do the IV after he is asleep. I was shocked to hear how loud the MRI/MRV machine is, and we were outside the actual room. We held Johnny while he fell asleep and passed him over to the nurses and doctor that would be tending to him. 





The two studies took just under two hours. The MRI looked for any evidence of a tumor that could be causing pressure on his optic nerves and the contrast for the MRV was checking his veins for any aneurism that could be pressing against his eyes. I was relieved to hear they found neither. 

At this point, I believe the original plan was to leave him sedated for a lumbar puncture or spinal tap as it is more commonly known, but due to a miscommunication, they awoke him and we got caught between shifts in departments and a very long wait in the ER. I could write an entire post about this situation, but I feel compelled to leave it at- some people didn't communicate well, some people kind of left us hanging, and other people did a great job helping us as much as they could. 

We were given a room in the ER while they made a plan for the spinal tap. Johnny still had not eaten since that morning (it was now 10 pm) and had not had more than a sip of apple juice at 1. We did the best we could with him, playing and distracting him, encouraging him to sleep, and simply holding him while he fussed over everything he was going through. In all honesty, he was amazing and did better than I ever would. 

At 4 am they came in to do the spinal tap. I would like to devote an entire post to the actual procedure at another time, but when all was said and done, it's a good thing they did it. It was horrible and hard to watch, but he needed to have it done. When they do the tap, they measure the pressure of the fluid. Neurologists look for anywhere between 9-15 units of measure (not sure on what the measurement is), Johnny's was 31, which is higher than most adults. They also took samples of the fluid to check for infection. 



Essentially, he has excess cerebral fluid that is unexplained. This unexplained fluid can and does happen, though it isn't super common. The fluid was/is causing pressure on those optic nerves which was thus creating nausea and probably disorientation. This isn't really a Down syndrome related issue, although there is a "fake version" of it called pseudopapalladema in which the optic nerves look compressed due to the shape of the eye when they really aren't. 

For several hours they thought they might admit us, but decided to discharge us with a perscription that is essentially a water pill. They are hoping this decreases the fluid, but it could take 3 months to begin taking effect. We have already followed up with the Opthamologist who hasn't seen any change for better or worse, which is fine and we will see neurology next week. 

At one point, one of the many medical students or residents that saw us in the ER commented on how positive and upbeat we were for 4 or 5 in the morning. Our response was simple, "For us, this simply is. We have been monitoring him and seeing specialists since he was 12 weeks inside me. It's not only what we are used to, but it is what he needs. So we do what we have to." We have a relatively healthy child, despite all of the extra attention he needs. We are blessed with him and for now, we are very glad he is healthy. There will be more to post in this arena for sure. 

Crushed

I came across a random blog post today. I have no idea who the author is and have no correlation with her whatsoever. I am joyful that her pregnancy and baby to be is healthy and ready to meet her mom and dad. They have been through a lot. I'm being vague on purpose. 


For some strange reason, for them a credit to God's miracles, they are the 10th of a percentage point of a wrong blood test diagnosing their child with not one, but two chromosomal disorders. For clarity, they took one of these newish blood tests, received results that their child had two chromosomal disorders, and discovered that the test was wrong. It's extremely rare, but it does happen. 

I am overjoyed that their baby is healthy and will probably live, the prognosis was not great before. 

The author of the blog is ecstatic, of course, and rightly so. I was happy with her until she began making claims that crushed me. My heart sank and I fought back tears of both anger and sadness. She gave tribute to the mistake in the test as being a miracle from God, specifically as an example of the power of prayer. She exclaimed His glory as her child is healed. 

Did we not pray enough?

Did we not show enough faith?

If this is a miracle, why was my son not chosen for such an event?

If her child is healed, is my child broken?

I can't help but feel the personal sting of her commentary. 

I KNOW this was not this woman's intentions, but words hurt. I completely believe in the power of prayer and that miracles can and do occur, but this may or may not have been what happened in this instance. I believe in God's sovereignty over all aspects of my life, even when He doesn't choose to miraculously take an extra chromosome from my child's makeup. My son was still knit together with a purpose and we would have exclaimed that regardless of where that extra chromosome was placed. 

I encourage this author, whomever she is, to proceed with caution. There is a whole population of moms and dads out there who have not been handed miracles. For those of us with living children, our lives are enriched by the children we raise. For those with children whose lives were halted early, their prayers did not fall to deaf ears even if He responded differently that they pleaded. 

Still, my utmost respect and joy for the girl who lives. 

Big Day

Today I went to my very first nursing school informational. I have been busy collecting information online, comparing programs, and trying to decide when to take the next step. We thought nursing school would be a long way off, something to pursue a bit later, but with a fourth child still evading us, Matt and I discussed it and decided it was time for a little action and exploration on my part. In reference to nursing school that is...


In all the programs I am looking at, the common factor is the type of degree I think I will be pursuing. Many nursing schools have a fast track/second degree BSN which would allow me to obtain my Bachelors of Science in Nursing and prepare me for licensure as an RN in anywhere from one year (after pre-reqs) to two years. Obviously, as a former history teacher, I have some sciences to take first. 

Honestly, I was and am a little nervous and scared. I want to do well, at home, in school, and in a profession. I want to manage and balance it all. I want to be successful in all the ways I perceive myself of being able to be a success. I want something that's mine, a profession that I can be passionate about, and a way to serve others. It my head, and my heart, it seems ideal. To find that convergent point at which passion and commitment meet the opportunity to make money is rare in our society. I know that nursing will be good and that I will make it even better. 

Still, I'm afraid of failure, in application, school, and the profession. I'm afraid of what I will miss by committing to more studies. I'm afraid of not being enough. 

Those fears aren't enough to stop me. On one of my pinterest boards I have a quote that states, "If your dreams don't scare you, they aren't big enough." This dream will take a lot of work and energy. It will take sacrifice and devotion. It will take away from many things as I pour more and more into it. But that nervousness and fear is beginning to turn into adrenaline and excitement. It's a good place to be!

For now, I'm just going to informationals and meeting with advisors and beginning to narrow down my next steps. I am looking at a few schools a bit closer and I may take one of my pre-reqs next semester at a local community college if things are still moving that way later this year. I am at peace with acting upon this goal in small steps and taking the time to drink it in. 

What nursing school informational session did I attend today? Do you really need to ask?


It's on a short list, but may not be at the top. We have more schools to talk to. 

Of course, having the opportunity for some of my favorite CS foods so frequently may be taken into consideration on a pro/con list! I cannot tell you how good this sandwich was from Blue Baker today!


I am sure there will be more to write as things develop. Tonight my tummy (because of the sandwich) and head (because of the school) are full of possibilities on what direction we may take next!

Update MacKenzie

MacKenzie,


It's going by too fast! I'm blinking for too long or you fast forwarded time because you change tremendously each day. Daddy and I marvel at each change and show of new growth and cannot believe how amazing you are. 

It seems odd to update you on your sleep at almost five, but in case you are interested for posterity, you sleep ok. You don't seem to need as much sleep as other children and if someone happens to wake you early, that's it, you are up for the day. Additionally, unless we run you and challenge your brain each day, you have a hard time going to sleep. I think your brain just takes a little while to slow down and then, once it's awake, you are too. The other day we were at Dee and Doc's house and you woke up and were fully dressed at 4:30 am, ready to start the day. I had to insist on you laying back down and "fought" with you the next 2 hours with the incessant "is it time to wake up now" questions. That being said, like all growing kids, when you are maxed out, we know it and try to get you extra opportunities to sleep or rest. 


You are a voracious eater although your tastes change from time to time. I guess it's probably not your tastes, but your preferences each day. You love pancakes and waffles, yogurt, noodles without sauce, chicken of any type, whole apples, broccoli, and CHIPS. You are obsessed with chips and I think it's very good that we don't buy chips very often because you may sneak them all out of the house. The past two weeks we have been putting the kid plates on the table then serving our dinners and by the time we sit, you have cleaned every bite of food of your plate. In fact, last night you were literally shoveling carrots and broccoli into your mouth as fast as you could with your hands. I think a growth spurt is imminent! 

Speaking of growth spurts, I was shocked to look at you helping with dishes one day and seeing this-


You are definitely not my little baby anymore. I know I've had that realization before, but this was slightly shocking nonetheless. You have emerged into this even taller, lankier, funny girl and it's amazing to be a part of. Like your sister, you love to help with dishes, but have to be convinced sometimes to help with the dishwasher itself. You do love to set the table or to help get meals ready so we try to encorporate that in as much as possible. You are also very good at helping Mommy take care of Johnny by giving him little things he needs or singing to him when he is frustrated. In other sibling relationships, you have been playing fantastically with Keegan and it's fun to hear your pretend play. 



You love to play with little animals, especially toy alligators or snakes. You also love to read books and to do artwork. You are very precise and detailed with your artwork and are diligent to make sure it looks the way you want it to. You also love to be outside, to ride your bike, and to run. The running is almost incessant. We will be sitting in the living room, playing, and you will get up and run a few times around the house as fast as you can. You have great form and long strides and the happiest running face I have ever seen! We are trying to figure out more ways to foster that love, keeping you guys active is important! I think you also love memorization and knowing/remembering things. It's uncanny how easily things are pressed on your brain and, again, the gleeful look on your face when you recall some fact or occurence. 



We love you so much Mac! While you present a shy and discerning face to the world, we get to see your silly, kind, and enthusiastic nature. We are honored to be your parents and appreciate tagging along for an amazing life!

Love,
Mommy and Daddy

Keegan update

Keegan,


I cannot tell you how frequently your daddy and I feel the most sincere appreciation that God picked us to be your parents. You make us so happy, you are always sweet and affectionate, and try to make everything fun and silly. There are so many times I think to myself that I want to capture full images of you because you are simply charming and enchanting!



For some of your regular things I like to take note of, you have many favorites. When asked about your favorite color you will reply quickly, "Pink and Purple! Actually, I like all the colors!" Mommy finds that interesting since you will rarely wear anything besides a pink dress. Hopefully you will be happy with dresses and tights this winter, you will have to wear something on those strong legs! Your favorite food is spaghetti with sauce, but you also love yogurt, bagels with jelly, all types of fruit, and lots and lots of milk. You will sometimes eat a lot, especially if there is fruit, but you aren't a voracious eater. You have been like that since you were a baby though, eating your fill, then looking for new and exciting things to do. Interestingly enough, if you are in a growth spurt you eat even less. You still sleep your normal amount, but will sometimes will creep downstairs and snuggle with mommy and daddy early in the morning. While we don't want to make it a habit, we don't really mind because you are a very good snuggler. You really love all of your stuffed animals right now, especially floppy the brown dog, rainbow dash the my little pony, and all of the littlest pet shop pets. We will frequently check on you before we go to bed, only to find you, glasses on, surrounded by animals. 





You love wearing your glasses and insist on wearing them, even at night. If we take them off, you will shake your head and say, "I can't see! I can't see!" The only time you agree to leave them off for a longer period of time is when you are swimming or splashing. It's such a change from even a year ago when you would rip them off numerous times a day or lose them just to make us mad. We had a small tragedy the other day when they fell of in the middle of a game of chase and mommy accidentally crunched them. They were on their last leg anyways, but mommy's big foot sealed the deal. You have been very sad without them and your face just looks so empty without big, spectacled eyes looking up at us. We are in the midst of ordering both a back up pair and a regular pair. I had the good fortune of finding your old pair (broken and less prescription) and we are wearing those until the other ones get here. You seem much happier with a little help for your eyes. 



We often play games at dinner and try to get each of you to do different faces. I love when it's your turn because every face quickly turns into a big smile paired with giggles. You cannot help but laugh at most situations. You will give us an angry face for a few minutes then burst into laughter, you will try to look scarey, but it's not long before a grin spreads across your face. I love your scrunched up nose and big smile that spreads your overflowing joy and happiness. You tend to be a little wild, looking for new ways to do things and have fun. Daddy took you to a birthday party this past weekend and said there was a big water slide. While all the other kids took laps up and down the water slide using the traditional feet first method, it wasn't long before you were trying new ways to go down. You were quickly honing head first, backwards, sideways, turning while sliding, and getting others to go down at the same time you were. This is not an uncommon characteristic of your play, you love being adventurous and making sure you get full enjoyment of everything you do. You seem to have fun in gymnastics and are very good at the climbing aspects of class. You really want to try dance so we may switch you to that next year. You often dance through the house whether that be pretend ballet or shaking your bootie. You do love hearing music and figuring out how to make your body move along with the tune!


While you love to be wild, you also love down time. I tell people all the time that you are either going full out, 120% or you are dead still. You will play elaborate games, both active and imaginative, creating elaborate stories for your animals or dolls, or you will be sitting completely still, resting or, sometimes, thinking. You will gladly give big hugs or sit in our laps to get extra one on one contact. If you sit near someone, we often see you stretching out your hand to touch the person near you. You are very thoughtful and very kind and always look for ways to help others. You love to make dinner with mommy or set the table and you usually scamper bag and forth from the car to bring bags in from running errands. Daddy rarely has to convince you to help unload the dishwasher and we have both commented on what an amazing dishwasher you are. You happily will stand at the sink and wash the kid plates with soap and water. 


When we are leaving the house, you often run towards the door exclaiming, "Don't forget the Keegan!"  How could we ever forget you sweet girl? You have so pressed on our hearts that we love to be with you and near you and nobody could replace that to us. Thank you for being such a large part of our joy!

With love,
Always,
Mommy and Daddy

Johnny Update

Johnny,


You are growing every day and, to be honest, it has kind of sneaked up on us! Some of your pants aren't long enough anymore, you seem more and more like a little boy when you practice standing, and your will is getting stronger each day. I am happy for each day that you grow in our care. 



You are a funny little guy. You love to pull Tupperware out of the pantry and chase it around the house. Particularly if there are multiple pieces of Tupperware that clang and crash together as you throw, chase, and slide with them around the room. You love to make noise! The other day you were making the most hideous noise with a Tupperware lid being dragged against the wall. You will pound your hands and play drums on any piece of furniture and and loudly squeal and grunt as you look for more toys to play with. We have been leaving your short orthotics on at nap time and you love to drag your heels against the crib and knock them on the wall between the rungs. In addition to making your own noise, you love listening to any kind of music. The other day a friend was singing a song to you and you grinned at her and started rocking back and forth. When I told her that you were much more of a Beastie Boys fan, she began singing that instead and was rewarded with a huge smile and dancing. You also love to chase balls around the room and will laugh with gusto if mommy dribbles the ball around you. You love to flip through books and will sit in Mommy's lap to look through books, especially the pet book that has been your sister's favorite at this age too. 




You are a great eater and will feed yourself all of your meals except for things like yogurt or oatmeal. We are still working on using a spoon for that. But you do ok with a fork and great with finger foods so we are happy. You have the same food we do, but love Mac and cheese, chicken nuggets, mashed potatoes, beans, bananas, crackers, and steak. You tried mashed potatoes for the first time at KiKi's house on Saturday and kept pulling at her arm to get you to feed her more. In fact, I think there was some urgent grunting and "mmmmmmms" in there too! You have recently dropped your morning nap for the most part. You will still doze if we are in the car running errands or going somewhere, but you don't need the morning nap and only will fall asleep for a short time. Your afternoon nap varies, but we usually try to get you to sleep for about three hours in that time. You aren't the best sleeper. I say that hesitantly because you are happy to stay in your crib that whole time (and 12 hours at night), but you toss and turn a lot and wake up frequently. I am glad that you are able to get yourself back to sleep. 



We are working on cruising around furniture and standing more independently to prepare for walking soon we hope. You are learning more sounds and signs too. You will tell me that the cow says "ooom" instead of moo which I think is adorable and you will roar whenever we ask what a dinosaur says. You are still a mama's boy and was very sad the other day when you figured out that I had gone for a few hours and daddy was the one to take care of you. That being said, you will sign "dada" and say it more frequently than you do mama. You pick up on what other people say a lot, if we say thank you to someone or tell the girls to say thank you, you will sign it independently. You also will make your puppy sound for any furry animal! We have had to tell you "no" more frequently for things, mainly for purposely dropping food off the table, and you will look at us like "how dare you tell me no!" You also try to play the cute card and will ham if up for us by making your "cheese" face if you think it will make us laugh. 




Johnny, you are an amazing kid and a wonderful son. You are sweet, stubborn, and energetic. I love the way you take everything in, observing everyone you encounter. I am proud to be your mama and enjoy and honor each day with you. 

Love,
Mommy and Daddy

As Natural As...

Recently, a friend asked about Johnny and his many therapies. I am always happy to expand upon and talk about his therapy, doctor appointments, and other circumstances to most people who ask. In fact, as long as people ask in love, I am more than happy to advocate for my son and other's who may face similar situations. Through the conversation, my friend, who marveled at all the stuff we do and work on, asked if it was all I think about. 


It's an interesting question and one I asked myself when I was pregnant with Johnny. I never knew if there would be a day, or even a moment, that I didn't think about DOWN SYNDROME. That's how I thought of it, as big capital letters flashin over our families all the time. It was so hard to wrap my head around that I found that it's all I could think about sometimes. The words would just roll around and rattle in my head constantly. Down syndrome. Down syndrome. Down syndrome. Over and over again, every other thought was Down syndrome. People would ask me a question, "What would you like for dinner?" And my mental reply would be, "Down syndrome. Wait? What?!? No. Pasta. Say pasta. You always want pasta. Yes, but what about the DOWN SYNDROME?!?" I don't think I ever blurted out Down syndrome in place of a food order. But it didn't stop. My own inner monologue was layered with thoughts about Down syndrome. I would think to myself, "I need to take the kids to the store. Down syndrome. We can go to hobby lobby first. Down syndrome. Oooo I have extra money in my budget for yarn. VSDs and ASDs mean potential surgery. That's common for Down syndrome. After we can go to target, I shouldn't forget soap and toilet paper. And don't forget about the Down syndrome." Seriously. It was a lot of thinking about Down syndrome. Thankfully, it wasn't a lot of meaningful thoughts on Down syndrome, it was just always there, in my head, never ceasing or going away. It was almost as if there was a flashing sign following me around (or maybe leading me) so I would never forget that my child possessed and extra chromosome. Sometimes I wondered if other people could see the imaginary sign too. As if they could tell from my swollen belly and thoughts that I was carrying a child with Down syndrome. It was a silly thought of course, but that is how suffocating it was at times. 

Now, it's better. And I don't know that I think about it less, as much as it has become more natural and second nature to have it on my mind all the time. To think about Down syndrome and all that Johnny needs is like breathing. In breathing, I don't have to think about it in order to do it, and for the most part, I don't have to think about his needs, I just take care of them. Picking Johnny up to work on standing and building his quads or stacking items or labeling everything is just what we do, just like inhaling and exhaling. Scheduling all the doctor and therapy appointments and making sure everyone has the best information available to treat him fully is just habit, the same as trading carbon dioxide for oxygen. Being aware of his glasses, orthotics, low muscle tone, and any other actual special need he may need addressed, is easier than even a yawn or a sigh. You just do it. And I am thankful for it. Just as any parent becomes great at taking care of their kid because it is second nature, so too has taking care of the Down syndrome side of having Johnny. 



That being said, just like breathing, there are times you need to focus on it a little bit more. There are times you need to be more deliberate about addressing certain needs, appointments, or milestones. Just as you may breathe a little deeper for exercise, under certain atmospheric situations, or in fight or flight, you may think a little bit more about Down syndrome and how you can specifically address and meet those needs your kid has. On the flip side, sometimes you think about breathing too much and it becomes difficult, almost debilitating to your body. The same goes with letting Down syndrome consume me and my thoughts. If I think about it too much or think about all the bad things, how hurtful people can be or the sadder correlations within the Ds population, the panic quickly sets in. In fact, the labored breathing, quickened heart rate, sweaty palms, and faint nausea that come with focusing too much on breathing is similar to the anxiety from devoting too much of my energy to Down syndrome only. You have to balance your breathing and take in only as much as you need at a time. 



My every other thought is not about Down syndrome anymore. I do think about it a lot, but in it's proper place, tucked away in the rapid stream of mommy consciousness that flows through my brain. It's there, it influences a lot of our life, but it doesn't scream at me any more. At least it doesn't scream all of the time. Sometimes it's a scream, sometimes a whisper, usually it's just a dull roar. Which, when set along side the dull roar made by grocery lists, schedules, plans for school and gymnastics for the girls, budgeting for dates and a new house with Matt, and dreams for a bubble bath and a glass of wine, a dull roar is just fine with me.