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. 

Jury Duty

Today I answered my first ever jury duty summons. Yes, I know, as a stay at home mom, I could have "gotten out of it". But I didn't see it that way. If Matt was unable to work from home from time to time, I would have used that exemption right now. However, he was able and willing to be a work from home dad for me to be able to serve. 

I knew that, if able, I would answer that call. Jury duty has long since been seen as a burden on our society when it is, in fact, a very important civic duty that we should all view with the utmost importance. We have a responsibility to answer that summons in order to be available for selection on a jury, one of our most important and fundamental civil rights. Years prior to the colonization and eventual formation of our country, British citizens were gauranteed trial by jury in the Magna Carta, a unique and unprecedented document that gave citizens rights, binding the government to obligation to the people and not just the other way around. British colonists carried those ideals to the Americas and expected that the waters of the Atlantic would not wash away those basic and inalienable rights. As even the earliest students of American history would tell you, many of these rights were infringed upon and even denied to the colonists leading to the writing of the Declaration of Independence, where our lack of trial by jury is mentioned, and eventually the United States Constitution where it was included in our Bill of Rights. Ensuring that American citizens would have the promise of a jury of their peers and not just a court official or magistrate was just as important to our founding fathers as issues over taxation, the lack of representation in all stages of government, and the famous ascertation that we all have three inalienable rights. So important was a jury trial that it was listed in the grievances against King George and again set forth in the law of the land as the sixth amendment. 

So when I received my summons, it never crossed my mind that I would try to get out of it because I didn't want to serve. In order for this right to be fulfilled, all citizens who enjoy the freedoms and liberties of the country, should fulfill this duty with the honor and dignity that the founders of this country intended it to be. Was serving on jury duty the easiest and most fun way to spend my day? Of course not, there were a hundred other things I would rather be doing. But it was my responsibility to be available to be on that panel, to listen to each side's arguments, and come to the best conclusion that I could. And reporting for duty certainly wasn't the worst way to spend a day. There was a lot of waiting and sitting and had I been selected, I'm sure there would have been more to follow. The system seemed efficient enough for the workers who are merely responsible to herd the available people to their respective areas. 

I cannot speak to the selection process or trial process as I was released just before noon. My ascertation that reporting for jury duty is important and an honor is by no means a testimony of a flawless legal system. My point is merely this, we have been gauranteed a right that many viewed as a privilege and we should take advantage of that privilege by serving and doing our part. 

Awakening

I know I posted about a week ago regarding "releasing" July 5th back to a normal day for us. I wrote about committing to letting go of Johnny's diagnosis and focusing on who he is and what he needs today. I was steadfast in my desire to move on to the present and where we needed to get to with him. 

I was able to stay out of that mentality for a week and a day. 

It isn't really my fault, I was socked into my diagnosis mentality at church this morning. One of the songs that I clung to as I awaited for news about Johnny and until we met him was Hillsong United's Awakening. 

http://m.youtube.com/watch?v=zQcpMfegDsc

It stirred much in me as I anticipated our child. I felt awakened to a new world that I never even knew existed. That world has a vocabulary, acronyms, timelines, and goals that I knew nothing of before. I felt awakened to a ferocious protectiveness that even I never knew excited inside me for my unborn child. I felt awakened to a new level of gratitude for the relative safety and healthiness of my older two and for the baby that grew inside of me. We thought we could lose him, we were grateful that, although not who we expected, he lived. I felt awakened to an adjusted sense of reality, my expectations were cast aside, and the actual needs of my children placed in the forefront of my mind at all times. 

I felt awakened most to wanting to know my purpose in raising a child with special needs. No longer did I ask "why us?" I wanted to know "for what purpose us?"

As the song says "let your will be done in me". 

It was hard. I cried mouthing the lyrics to this song, unable to pray anything except for "please let my baby be ok" and lyrics to songs from church. I didn't know what or how to pray for my baby, my family, or myself, so I had to rely on the words of others to speak on my behalf. I felt darkness and so desperately wanted to move past that to the light and bliss in my pregnancy and expecting my child. How appropriate that the lyrics of this song speak of the "rising sun that shines, from the darkness comes a light, I hear your voice say this is my awakening." I was so fearful of the numbness that I often felt, I was worried that my numbness would carry over into the love and raising of my child that needed and deserved so much more than I felt like I could offer. I played this song over and over again, pleading for my heart to be stirred and for soul to be awoke to provide what I could for my baby. 

Johnny was my sun that shined in that dark time. With his first breath and calm cry as he was born, I was changed, even more so than going through all of the issues during pregnancy. In that moment, all darkness and fear passed and all there was, was my son, my sun, and my awakening. Pregnancy, labor and delivery, and child rearing can be spiritual in and altering in itself, but that moment, where I had prayed for this awakening and received it, was powerful and perfect. Meeting my son changed me in a  way that I cannot explain, but I praise God for allowing me to have that. In that perfect moment, when he was introduced to me, I knew that I could be the mom he needed. I knew that I would have to rely on God and sometimes others for support, but I could and would care for him and provide for him however he needed. And I knew that my fierce protectiveness had been solidified in me along with absolute adoration and love. 

Today our praise team sang this song that meant so much to me during my pregnancy. It took me back to the despair of the bad days and the hope and joy of Johnny's birthday. As tears sprang to my eyes, I gave thanks for the wonderful time we have had raising Johnny so far and how much we have learned together. I gave thanks for the reminder of where we were and the motivation for continuing on. I smiled in regards to remembering how meaningful his birthday was for us, a birth of sorts for  me as well, preparing to not just be a new mother again, but to be his mother. 

I also wondered what God's will is for us now, how we can continue to serve HIm, and how our family will be utilized in His plan...

A Different Independence Day

Two years ago today, we found out that Johnny was coming to us with an extra chromosome. July 5th had held a lot of anticipation for us, friends, and family who had prayed over our doctor appointment and waited with worry and concern along with us. We had made the difficult decision to find out the results of our amniocentesis in person, at my doctor's office, in order to be together and to have control over the setting and manner in which we learned more information about our growing baby. As much as I had worried and fretted over the weeks leading up to this appointment, the night before found me increasingly anxious and nervous. At the appointment itself, I continued to feel this way until Dr. Norton walked in. In that moment I felt a sense of peace and if you had asked me if I thought my baby Raptor had Down syndrome or not, I would have told you yes. We had prepared ourselves to hear the news and even though I felt that this was the case, actually hearing it confirmed was still devastating. I know I cried and needed moments to collect myself. I also know that, like my appointment 8 weeks prior in which we discovered the first markers of Down syndrome, I felt a little numb. 

The day continued on hard. We had our girls to come home to, Matt had tests to prepare for that evening for graduate school, and life still needed to go on. However the hardest part of the day was yet to come. Telling people, many, many people that cared about us and our sweet baby was more difficult than I ever imagined. It took us time to figure it all out. I wanted to close the door on the day, move on to the 6th, and just have some miraculous way of making everyone know at once in their own perfect way. That wasn't possible though, my mom was first since she was hearing watching the girls, phone calls to Matt's parents and my dad came next. More phone calls, text messages, emails, and a blog post conveyed information and emotions to people throughout the day. In fact, I think I was in the midst of all of that at this very moment two years ago while trying to deal with my emotions and sadness at the same time. If I had known how hard it would be to tell everyone, I would have never said when we were finding out so I could have spaced it out differently and I would have had someone make some of the contacts for me. It was really overwhelming at the time. 

I think this feeling stemmed from multiple things, but the largest was the fear of rejection. I had entwined my heart to this baby when I found out that he or she was on the way and that bond only grew stronger when I found out that he or she may have extra needs. I was sad about that, but ferociously protective of him or her immediately. I would literally cling to my stomach as I talked to people about my worries and concerns for Baby Raptor, subliminally and consciously fearful that something could happen to take him away from me. But others didn't have to feel that way and each phone call I made opened me to rejection and disappointment from whomever I was telling. I was afraid of the "Oh" laced with dashed dreams for our family. I was afraid of the "I'm so sorry" paired with a choked gasp of air. I was afraid of the "Are they sure? Surely this isn't right?" hoping that the doctors were wrong, that there had to be something better for our child. I was mostly afraid of the silence. There was no reason to feel this way, it just scared me. I was fearful and sad in those hours and felt more vulnerable than I probably should. 

I didn't know what Down syndrome would mean for us, neither did most of our friends and family. But people would have to love and accept my child or move on from friendship with us. We loved this child and wanted all the best for Baby Raptor "in spite of". Additionally, we were going to meet all of this baby's needs, whatever those may be. 

It was a hard day, not the first of Johnny's life, and surely not the last. I have held on to this day as being momentous in our lives. However, like I just said, we didn't know a lot about what Ds would mean for Johnny or for our family. We knew he had an extra chromosome that day, but we didn't know anything about who he is and who he would be. I have looked at July 5th as being a defining day in our life and it would be, if all we needed to know about Johnny is that he has Down syndrome. That extra chromosome impacts a lot of what we do on a regular basis right now because we are pushing towards some specific goals, but it doesn't impact everything we do and it isn't all that Johnny is. He is more than the diagnosis, so I release this day back to the calendar. Will I think about his diagnosis more throughout my life? Probably. Will I remember this day as being the day we found out? With my memory, definitely. But I'm giving back the hold the day had on me, I'm taking it off the pedestal, I am filing it away to a bit of normalcy. I don't think Johnny would want us to file July 5th away as a day that was that important in his life. I think he would rather we remember July 5th for a thousand other reasons, mundane, normal, post Fourth of July reasons. I think he would rather we went swimming, are leftover BBQ, gave him Popsicles, and spent time as family, than remember the hardships of two years ago. For Johnny's sake, I declare my independence from his diagnosis day. 

Submission

The cycles and months move on and still we wait for any sign of a fourth child to be added to our family. It's kind of hard to talk about, not because I mind emotionally charged conversations, but because it is hard to explain how we feel. 

Plain and simple, our heart's desire is to have a fourth. That being said, we also place our trust in God's plan for us. We know and rest in His journey. I, personally, have had a hard time reconciling these two things until a few months ago, which I briefly posted about. I wondered how I could trust God's plan and have my own desires at the same time. I was graciously reminded of Jesus and His sacrifice on the cross. While Jesus willingly went to the cross, taking on our sin, He did appeal to His Father to lift that burden off of Him. Jesus asked for their to be another way and He even cried out to God, asking why He had been forsaken. 

I have found such comfort in my despair because of this reminder. If Jesus can ask for deliverance in the greatest act that ever took place, but still yielded to God's will, then surely I can appeal for my desires, while still honoring God. I think I felt disrespectful before, like I wasn't being submissive enough if I was asking for what I wanted which seems to be out of alignment with God's story for our family so far. 

I still struggled with this, trying to be proudly stoic about our refuge in God while we try to figure out His plan for our fertility as if I was perfectly balanced towards accepting our three blessings or welcoming another. However, as I approach some potential answers in the coming weeks, it became clear to me that I still cling to the idea of a fourth for our family as emotions took over when my words said otherwise. As I cried at the thought of our family expansion being over, I have been reminded of how much I would love another, even though I am so happy with my three. I think it is an odd and awkward place in fertility struggles, already having a family and wondering why a pregnancy hasn't occurred again. In a way, I am grateful for my true emotions to come forward, for my passion for another child to present itself, because I was starting to wonder if God was changing my heart in an attempt to prepare me for this chapter to come to a close. While He may still choose to write an ending to that chapter, I feel better knowing that my heart is still in it. 

I don't have a lot of information about the scientific and health reasons for our lack of success at the moment and I am not sure how much we will share on that front, but I am glad that I am working with my doctor to see if we can figure something out. We have also been appreciative of prayers and support from so many people in our lives, for general and specific things thus far. 

We feel honored to have been trusted with three wonderful children so far, clearly examples of God's handiwork. We hope that there remains another for us. 

Zoo in the Rain

Our zoo membership has been one of the best investments we have made for the past two years. We splurge on the larger membership so we can take friends with us, appreciate the free parking, and love the ability to load up the stroller with snacks so we can work our way through with the kids. We went to the zoo yesterday with Crystal and her boys and missed the chance to see the Tigers up close due to the rain. We were able to take shelter from the hardest rain and enjoyed the cooler temperatures brought on by the showers throughout our visit. Plus, the kids loved playing in the "splash pad" made by God since the other one was closed due to non existent thunder. They played in the rain and splashed in puddles throughout the zoo. 

Hashimotos Disease

One of the preventative measures that is taken for kids and adults with Down syndrome is a yearly blood draw to check a number of things. One of these things that they keep watch over is the thyroid. There is a strong correlation is individuals with Ds and several different thyroid issues and because we want our kids to be healthy (just like their typical peers), we make sure that aspect of their body is functioning properly. We were told after Johnny's one year appointment that his is not functioning right which led to an appointment with an endocrinologist, an ultrasound of his thyroid, more bloodwork, and a follow up which happened this week. 

Through this, Johnny has been diagnosed with an autoimmune disorder called Hashimotos. It's a very common autoimmune/thyroid issue and it has some correlation within the Ds population. There is a lot of complicated factors about this, but essentially, antibodies in Johnny's body don't recognize his thyroid or part of his thyroid as belonging to him and they attack in. Currently, his thyroid is handling it well, but it causes the thyroid to not work as well creating a hypo, low functioning, thyroid. Because his body is maintaining decent hormone and thyroid levels for now, we can stay off medication as long as we keep an eye on him and do regular blood work (twice a year for now). The doctor gave us several signs to look for (extreme weight gain, constipation, lethargy, muscle weakness, dry skin) and took more blood to see how his levels have fluctuated since January. She also asked that we avoid large amounts of soy, specifically straight soy like soy milk, tofu, edamame, and food products made largely from soy. This is fine for us since we don't eat a ton of straight soy, but at some point we may need to keep a closer eye on products containing soy or his diet in general. 

We are grateful that he is doing well considering, and we are glad for easy solutions to make sure he is healthy. There is a large concern for weight gain in the Ds population and I feel that helping control his thyroid and diet will make a large impact on him being a healthier version of himself. He was pooped after his appointment and passed out in the stroller!

Two-bes

We always expected a few rounds of tubes for Johnny. One of the many physical manifestations of Down syndrome is smaller ears and ear canals which can lead to fluid retention and hearing issues. His first set of tubes went well, but we expected them to last longer than six months! 

The timing was perfect for our follow up with our ENT, one of the tubes had just started to dislodge and while there was fluid in his ear, he didn't have any infections yet. When the tubes were placed on Tuesday, the other tube had stopped working and fluid was gathering in that ear as well. We are grateful that our follow ups and checking in with our doctor on a regular basis have helped us avoid infection. 

Johnny did even better on this go round, they apparently only administered a teeny dose of anesthesia because he was wake and mad when they brought us back to recovery. One of the hardest parts of his last round of tubes and his sedated ABR was waiting for him to wake up. While it didn't take hours for him to wake up, it did take longer than we were told so our anticipation built as each minute ticked by. We were so grateful for our feisty boy being awake and fussing, despite dirty looks from other parents who were apparently not ok with Johnny's intermittent crying. 

We were released quickly and Johnny are a huge meal of macaroni and cheese and dinosaur shaped chicken nuggets before having milk and taking a nice, long nap. He has shown no ill effects of the procedure and we are grateful for that. 

Oh no! Not again!

We have gotten Johnny new jammies when he has to be sedated. These are glow in the dark dinosaur jammies. The pants are like grown up Jammie pants and make him look like a big boy!

They gave Johnny's puppy an id bracelet too!

King Sized Memories

When my grandmother passed away a year ago, she left me a little bit of money. It's interesting to be left money by someone in their will, it's the second time it has happened for us as adults and we have felt an incredible sense of obligation both times. The first time could not have been more perfectly orchestrated to help us with Matt's school and setting us up for me to stay at home for the time being. This time, we wanted to honor her with something lasting and that we could feel a sense of gratitude to her for. We had been wanting a king size bed for sometime and this was the perfect item to fill that want for my grandmother's money. We mulled over it for sometime before deciding on the set we wanted, satisfied in the balance between purchasing something "fun"and something  "responsible". 

I think the more important aspect of this purchase and the hope we have that it properly honors my grandmother's memory is much more simple. It involves bottles for Johnny in the morning and extra snuggles on nights when he doesn't feel so great. 

It involves Keegan waking up as early as she can and sneaking downstairs to join us, pressed as close to us as possible. It involves Mac jumping in with us at full force in the morning, demanding breakfast and entertainment (and our insistence that she rest with us for "just a few more minutes"). It involves lazy Sunday afternoons and Daddy sharing the comics with the girls, painstakingly explaining each one and why they are funny. 

It felt nice to be remembered by my grandmother who I cared for very much, but it feels even nicer that we are using her last gift to us to build memories with our family and to spend time together. 

Comfort

One of my biggest recommendations for new parents and especially for parents of kids with special needs is to find a medical team that you are comfortable working with. At first, for most families, this just means a pediatrician, but that could easily grow to include a dentist, optometrist, and other specialists as your child grows and has different needs. When we were pregnant with Mac, I asked my ob/gyn who she goes to for pediatric care for her kids and followed her recommendation. I've heard of some parents interviewing and researching their first pediatrician, my doctor's recommendation was good enough for us. It has worked out beautifully and we couldn't be happier with her. 

Our medical team grew as Keegan needed to see the pediatric cardiologist in her first year of life and then an Opthamologist just after her first birthday. We have been fortunate enough to have already been under the care of a dentist and an optometrist that can see our kids as well. With all of Johnny's special considerations we are adding on more specialists. He sees our cardiologist and Opthamologist as well, in addition to an ENT, Audiologist, Endocrinologist, and providers at the Down syndrome clinic. His medical needs are time consuming, but we are grateful at how minor they are for the time being. 

This being said, I encourage the following-

First, be comfortable with your doctor's decision making skills. While we can research a lot, we do not have the expertise that our doctors do in seeing situations that arise with our kids and making the best plan to treat those situations. I would also encourage you to tell your doctor that you trust them and appreciate their expertise. This simple statement helps build your provider/patient relationship a lot. We have also found that all the doctors we use err on the side of caution or wait and see if the problem can fix itself. We are appreciative of this hands off approach with non life threatening situations. We always ask questions if we have concerns and have always been treated well by our doctors with one exception. We currently have a doctor right now that we aren't super pleased with, but are waiting for some further information before taking action. Which leads me to-

Second, doctors are very well trained and highly educated members of the service industry. If you do not like your doctor, ask for referrals from friends and find someone that you can work with. Matt and I respect doctors and the hard work they do, but there are times when the fit isn't right with medical providers. In the situation we aren't super pleased with right now, it's a matter of bedside manner and how we were given information about a potential diagnosis. The knowledge of the doctor has never been in question nor has their suggestions for treatment. We will be shopping around for a different specialist as allowed once further information is gathered from a follow up. If you don't agree with your doctor, you are more than entitled to a second opinion, so get one. 

Third, when you have children, special needs or not, you need to be comfortable with your doctor. This is different from the first suggestion and fits more along the physically comfortable part of it. With little kids and specialists, you will be in close proximity to your doctor. Often times, you are holding your kid for exams or procedures. If you aren't comfortable with being close to your doctor, they will have a harder time getting the complete knowledge that they need. Some of our doctors sit knee to knee with us, doctors have had to touch our hands to test certain things for Johnny, doctors have leaned next to us while we held Johnny down, and doctors have done preliminary exams on our kids while I was in the middle of breastfeeding Keegan or MacKenzie (with permission of course). I think many of us wouldn't dream of being seen by a doctor who we didn't want touching us, so I'm not sure why we wouldn't want that same level of comfort for our kids. 

Fourth, if you live in a large city, take advantage of the vast resources you have. I love Houston, but even more so now that I have kids because of the access to Texas Children's. For most things, we see our regular pediatrician, but Johnny gets biannual checkups at the Down syndrome clinic too. It's wonderful to have a group of doctors who solely focus on kids like Johnny to help keep tabs on us. I also worry less for his procedures that need anesthesia because of the level of expertise in this city. 

Fifth, take location into consideration. Our pediatrician's office is less than five minutes away and most of our doctors see us about 15 minutes away from us. With the amount of time spent at the pediatrician in the first few years of life, especially with three, it was important to have someone close by. Additionally, the specialists are all at a satellite office of Texas Children's which means we get experts without having to drive downtown for every appointment. We are still down that way some, but most of our appointments aren't a huge drive. A small sub recommendation would be to budget for valet parking when a trip to a downtown facility is necessary. Parking can be horrendous at TCH-Downtown, so we let someone else worry about it even with the extra cost. It helps bring peace of mind to us and it's a lot easier to get one or more kids in and out of the hospital that way. Plus, if your kid is having an actual procedure and not just a checkup, they can be cranky or tired. Who wants to navigate a parking garage with cranky kids? 

Last, take doctor network into consideration. Our specialists and pediatrician are all also part of the Texas Children's system so their records are accessible by one another. It is really helpful to not have to bring medical records or make sure they are transferred over before an appointment. Even the simple information of kid's growth is helpful for our doctors to have a complete record of, but they can also see when they have been sick, any medications, last immunizations, and special concerns or considerations. 

Once again, we are very grateful for all the luck we have had with seeing doctors over the years. Between perinatal care and pediatric care, we have had a ton of people look after our kids, so having one potential "dud" in the mix is doing pretty good in my book. 

And pictures of the kids just because!

Tiny Blessings Woodlands Event

Back in the fall, Karlin and Jennifer made contact with a woman who lived in The Woodlands when they hosted a class at our church's women's retreat. She was impressed with our little ministry and invited us to an event at her church this past week to showcase, with other's, our ministry and the work we try to accomplish with Tiny Blessings. It was a great event and we were able to meet and make contact with several women who want to be a part of the work God has charged us with. Before the event started, we prayed for God to be glorified, for Him to use us to minister to the hearts of women there, and we prayed for a potential contact to be made with someone who may be able to start an extension of Tiny Blessings in The Woodlands. As we met several women, it was humbling to see their eagerness in finding out more about what we are doing. Many were interested in helping us and working with us in some capacity. I think we were all nervous, but enjoyed the time together. 

Arranging and sorting items the night before 

After dinner, the speaker of the evening, Teri Ussery, of Texas WMU, fueled our souls for continuing on and pressing forth in our ministry. She spoke about finding the cross section between your passion and your giftedness, and in that spot, you will find your calling. Jennifer, Karlin, and I (along with other's in Tiny Blessings) feel honored to have found that cross section combining crochet with ministering to families in our community. Apparently, our passion is clear, we were specifically spoken about as showing excitement and love for what we do. As we sat there fighting back tears, it did feel wonderful to know that our love is clear when we speak about crocheting (and sewing and knitting) to bless our families. 

 Some of our items that are ready to go

I believe we have over 150 hats, a handful of blankets, and several gowns

 Our set up

We randomly got assigned to sit at the Baylor decorated table.

I suspect there was a little money exchanged between Jennifer and the organizers.

However, Jennifer's college roomie was also assigned, randomly, to sit at our table too!

I think it is amazing to see our ministry work. I don't think that we thought, with our first drop off, that we would be able to fill the needs of our own hospital, much less watch our ministry grow and expand, much less be actively seeking people to start their own branches. I never would have been so bold as to ask God to find a person for us to make contact with a year ago and now it just feels right to be engaging and searching for ways to help Tiny Blessings touch more lives. We are also searching for ways to expand our own branch, in addition to being on the lookout for new friends to partner with us in prayer and in making items for our hospital, we are starting to look into possibly growing enough to begin fulfilling the needs of another hospital as well. We just had a conversation last week about how we name our Facebook page "tiny blessings Cypress" because "Tiny Blessings" was already taken. We never would have guessed that the distinction would become important as we rapidly began having other Tiny Blessings Ministries popping out in different parts of the state! We are starting to talk about goals with defined timelines, working on inventory, and setting up a potential meeting for anyone interested in the areas we are looking to expand into. It all seems so official and we can't help but marvel in God's hand in our projects. We started out as a group of mommies with a serious addiction to yarn that were looking for fellowship, plus a small desire to minister to the needs of others without compromising a ton of time to our families. Now there are needs pressed on us, calls to act that we try to answer, and a growing excitement to do more for these families we serve. 

I think we all hope for a few things- that we always answer God's calls for our ministry, that we grow in His name and for His glory, and that we remain grateful for our part in His work. Over and over again last week, people exclaimed how wonderful it was that we do this ministry. We tried to assure them that we are the ones who see wonder, we are the ones who are grateful to be called, and that we are blessed by our little ministry. 

We are so appreciative of everyone's support so far. Our hospital has some very real needs right now and we are working to fulfill those needs and to finish up our first round of hats to honor our Veterans and those currently serving for Memorial Day. Please pray for the families served by our ministry, they have had a rough go the past few months at the hospital, the nurses are hurting alongside the families and they are seeking many items from us. We will be sure to keep everyone updated in the coming months as many things come together.

A huge thank you, once again, to The Woodlands First Baptist for having us last week. You were a blessing to us.