Comprehensive Care Clinic

Today I took Noah for his intake appointment at the Children's Comprehensive Care Clinic. This clinic is a pediatrician's office that only sees medically complex kids. Our appointment lasted about 2 hours. We sat down with the doctor, a child life specialist, and a social worker.

They took some normal vital signs and height and weight and all that jazz. But really this appointment was about getting to know Noah and all of his complexities. The doctor started by saying that they all had a chance to review Noah's medical history and she recited it for me off the top of her head. Color me impressed! She knew the names of all of his doctors and what they have ordered and diagnosed and what procedures had been performed. She seemed like a very smart woman. So after a brief synopsis of Noah's history she asked me my favorite question: What is you biggest concern right now?

Perfect!

I told her that I am actually in the process of checking out some second opinions from the team at Texas Children's Hospital in Houston. I told her how I felt that there wasn't a plan... "We don't even have a 'pluh.'" [FRIENDS reference] Anyway, I went on to say that the goal of any person with a trach should be and almost always is decannulation. I realize that for some people that just isn't physically possible. But for Noah, I have noticed such improvements over the past year that I think it is totally something he can accomplish. He has done so much work and gotten so much better all on his own. I want to see what is possible if we give him a little but of help. Maybe that means surgery. Maybe that means using a speaking valve more and trying to cap his trach. I don't really know what it means and I would like to have a plan. Even if it's a 5 year plan. I just want to know that we are moving somewhere.

So after my little soap box rant the doctor thought I made some very good points and she said she would be willing to advocate for us to the team at Dell and help us get to the point of having a next step for Noah's airway. She also thought it might be a god idea for second opinions just to gain new perspective.

Then we went on to discuss other areas of Noah. The Child Life Specialist asked me what his typical day looks like and what kinds of interactions he makes. I told her that Noah is very cognitively aware and very smart. But it is hard for him to be expressive with his body in the way that he wants to so I feel like he gets frustrated and has a hard time coping. I, for one, would be very frustrated as a PMD patient. You can't manipulate your environment or even make your own body do what you want it to. Noah's only way of communicating is crying. He has no words to tell us what he needs so he cries till we figure it out. Sometimes it's easy and sometimes he just has to cry until he falls asleep. It breaks my heart and I hope some day we can give him words or a way to tell us what he needs. The Child Life Specialist is also in the clinic to support siblings. They have a play room with different books and activities so if I ever had to bring Oliver along, he could go off with the Child Life Specialist and play while we see the doctor. They also help siblings learn to cope with new diagnoses or equipment that their brother or sister may have. They have dolls and books and activities to help them learn about it instead of being scared or overwhelmed.

We talked some more with the doctor about different medical problems that Noah has or that we anticipate him having. I told her that I like to be very proactive with Noah's treatment and begin medications or regimens at the beginning or even before a problem occurs just to minimize his discomfort. At this clinic they do a yearly check up where we will discuss our goals for Noah and his health as well as address any new things that have popped up in the past year or things we think will pop up in the year to come. They will also serve as a middle man between us and the rest of his specialists at Dell. We are to call the clinic for anything we need and then they will contact whatever doctor is needed. They also have monthly conference calls with the trach clinic staff at Dell to discuss patients that they share.

Overall, it was a very good appointment. I was very impressed by the doctor as well as the professionalism of the rest of the staff. I am hoping that this transition will be beneficial to us and help us get the best care for Noah. We are very sad to leave our old pediatrician because he is such a wonderful doctor and person. Oliver will still continue to see him though so we can give updates on Noah.

Glasses, iPads, Second Opinions... Oh My!

First of all I have a super exciting thing that happened to me! I won an iPad 2 giveaway from the blog Love That Max! I have never won anything like this in my whole life and I am so darn excited I could just scream!!! Ellen, the writer of Love That Max emailed me last night saying that I had won the giveaway. I immediately started crying because I was in shock. I have been wanting to get an iPad for Noah and I thought maybe for Christmas, if we pooled together all the money from family, that maybe we could get one. There are so many awesome apps to help with speech development, cognitive development, as well as helping with vision and fine motor skills. I know it will take a lot of work with Noah but I am hoping that he will be able to use it independently one day. I am just so thrilled and feeling so blessed that I now have the tools to make this dream into reality. Also, Ellen said that she had read some of my blog which made me feel so honored! She has won many blogger-type awards and is very well known in the special needs blogging community. If you have some time, you should check her out at www.lovethatmax.com.

I have also been in contact with a few people at Texas Children's Hospital in Houston. Up until now I have thought that Noah's care has been fine at Dell Children's. Lately I feel like we are not getting anywhere and they are just managing Noah and his trach instead of trying to help him progress. There has also been a lot of hooplah with Noah and his ability to wear a speaking valve. Doctor and speech therapist from clinic say we need to hold off until Noah gets scoped. I say differently so I will not stop him from wearing it. I am getting very frustrated and feel like they aren't really listening to me, only hearing what they want to hear. They have never even seen Noah with his valve on so it makes me upset that they would try to make recommendations when they really have no idea. So I think it's time for a second opinion.... Hopefully Texas Children's can get us into their clinic in October. Please send up some prayers that they will have good things to say and that they will hopefully be able to help us toward our goal of getting the trach out someday.

And today, we took Noah to try on glasses! I am so excited because he looks so cute! He actually looks very grown up in his glasses and they should be ready in about a week! Here is the best picture we could get. He was very worn out from trying on glasses so he didn't want to open his eyes.

***P.S.***
If you could leave a comment on this post telling me your favorite kid-friendly, learning app for iPad that would be awesome! They can be for special needs or otherwise. I just want to have a good starting point. A few things to consider would be apps that are easy to activate and/or have lots of bright colors or sounds to catch Noah's attention. Thanks in advance!

The Other Side

I feel like there is no concept of time anymore. My days consist of the ebb and flow of nurses, Nathan sleeping during the day, keeping Oliver to a dull roar, and feeding Noah. The hours pass so slowly yet how can it already be the middle of August? Didn't we just celebrate Noah's birthday?

I feel like I am constantly trying to stay afloat. Trying to keep my head above the ever-rising waters. I feel like I am just surviving. Doing whatever I need to do to make it through to the next day. Keeping Oliver mildly satisfied with cartoons or the occasional outing. Keeping Noah healthy. Keeping food on the table for my family. Keeping money in the bank account. It is all overwhelming. And this tidal wave of things to-do is threatening to take me under at any moment if I let my guard down.

I feel like we are waiting for a miracle. For Noah to miraculously get better and get his trach taken out. I feel like there is progress, but it is so painfully slow that you may miss it if you aren't paying attention. The doctors certainly don't say much when it comes to the process of decannulation. I know it has only been a little over a year but it feels like it's been too long. This is taking too long. We need to do something now.

I feel like I don't understand why Noah has this disease. Scientifically, I get it. He has a point mutation on the PLP1 gene which causes Pelizaeus-Merzbacher Disease. But in my heart I don't know why. I don't suppose I will ever know in this lifetime. But I wish I could be at peace with it. I wish I didn't have to fight back tears every time I think about it too much. I wish I could write about it with poise and grace and faith instead of sitting here with tears streaming down my face in sadness and in anger.

I feel like we are stuck. We are at the edge of the cliff with no way to get to the ever-so-wonderful "other side. The other side where things are better. The side where it is easier. The side where I can make sense of this horrible disease and what it has done to my child, my family. The side where I can take Noah out in public and be okay with people staring.

I like to think that we will be on the other side someday. And we will look back on this time and it will remind me of my strength and courage to find a way to get there. For now I will wait. Patiently wait to be shown the way. But maybe I'll pick up a book or two on "How To Build A Bridge" just to help us along ;)

You Can Birth A Baby

Since a lot of my peers are getting to the age of having babies I feel like I need to give my two cents on the subject of pregnancy and birth. I have done it twice myself and would do it again a thousand times over. Since I started writing my blog I have been interested in a few other blogs as well. I read Chasing Rainbows, Love That Max, and Birth Without Fear to name a few.

The Birth Without Fear Blog has opened my eyes to the world of birthing that I had previously thought impossible. It has made me realize that I am just like these women. These women growing and laboring in love to bring their children earth side. I cry with every post I read because I know what the pain is like. I know how it feels to work so hard to bring your child into this world. And I also know the other side of when things go wrong. When there is something wrong with this precious creature that only moments ago was perfect and safe inside of your belly.

With Oliver, I was a week "overdue" and was scheduled for an induction. During this induction they placed a little pill-like tablet on my cervix called Cytotec, to help ripen and thin out my cervix. This medication is KNOWN to cause uterine rupture. It says on the package to NOT use on pregnant women. If I had known then what I know now, that little pill would've never entered my hospital room. Why on Earth would a doctor or nurse or anyone ever decide that it was okay to use that medication when it clearly states the risks of a freaking uterine rupture?! I just don't get it. On top of that, they gave me a sleeping pill since it "will be at least 8 hours before anything happens so you might as well sleep." Yeah right! I hardly remember my water breaking and the rest of my labor was such a blur.

The day of my first sons birth is so foggy to me and I am sad.

Then when it was time for my epidural [I was convinced in my own brain that I could not handle the pain alone] my blood pressure was dropping so I had to curl into the fetal position on the bed while they administered the epi. Can you imagine getting into the fetal position with a 40 pound watermelon attached to your stomach? No? Well, I did it and it was not fun or comfortable or very pretty looking.

Then he was born and I had a couple stitches (which I wasn't even aware of until I asked my doctor what in the heck she was still doing down there). He was brought over to me and I tried to breast feed him but I was still so, so tired and out of it from the sleeping pill. I had very little interest in my baby and just wanted to sleep. I handed him off to my Mom and drifted into Dreamland. Nathan changed his first diaper, and every diaper after that until we got home. Once I got out of my groggy state I was fine. I was breast feeding and learning how to swaddle him. I got up and took a shower. We went home and everything turned out to be fine.

Or so I thought....

I know now that if I would have waited I would have gone into labor my own. On Oliver's terms. Not mine. My terms were selfish. I was "late" and wanted him out. But is that really the best thing? I can't really say how it would've gone but I wish I would have waited. Maybe I would have remembered every little detail like I do of Noah's birth. Maybe I would have breast fed longer if our relationship hadn't started off so sleepy. Maybe. But who knows?

When I was pregnant with Noah I just knew I was going to have him early. There were 2 times when I was admitted to the hospital with consistent contractions but no cervical change so they sent me on my way. When I was truly in labor at 35 weeks and 6 days pregnant I just wanted it to be over. I didn't care if he was preemie. He's not that premature anyway. He will be fine, I thought. I hate that I thought that. I absolutely hate it. For months after he was born I thought it was my fault that he was in the NICU. That's what I get for being selfish AGAIN! I beat myself up thinking that he was safe in my tummy and I made him come into the world too soon when he wasn't ready. It was my fault. There were no other medical explanations as to why he couldn't breathe on his own so it had to be my fault, right?

This is why I get so upset when people try to make their babies come early. Or have c-sections at not even 40 weeks without medical reason. You never know what is going to come out even if you had a completely normal and healthy pregnancy. I've seen pregnant friends on Facebook bragging about the fact that they are getting induced early or saying their baby might come in 8-12 weeks. Just because you are considered "full term" doesn't mean your baby is done cooking. I would hope that the baby would stay in as long as possible. An estimated due date is called that for a reason. It is an estimate. A best guess of when your baby will possibly be ready, but it if takes a little longer, then that's fine too. Doctors are so quick to induce and they don't give you options unless you give yourself options. Please be informed about the decisions that your doctor is making for you. If you don't like that decision, then make your own. You have every right to refuse a medical procedure if you don't feel comfortable. And please think of your baby. I have named every pregnancy complaint in the books when I was pregnant. I know how miserable you feel. I have been there. Twice. Just please think of your baby. Don't you want that moment when they take their first breath to be something you remember?

I wish I remembered.

I was young and didn't do my research when I was pregnant. I was put through the hospital system just like everyone else but there are so many things that I wish were different. If anything, just go read a few stories on the Birth Without Fear Blog. Those stories are so empowering and fill me with a sense of pride when I read them. I am so proud to be a woman that can birth babies. It is such a magical and wonderful experience. Don't you want to do it right? Your baby is someone you love more than the whole universe. Don't you want to make sure that you do everything in your power to bring them into this world in the most special way? 

The births of my two children were the most important days of my life. The day you birth your child will be  your most important day. Please make it special. Please make it beautiful. Please be informed and understand that everything that is happening within your body is meant to happen. You can birth a baby. I believe in you.

Photo Friday: Adventures of Noah and Oliver

We went on an adventure today! And boy, it wore me out!

I decided to take the kids to the mall.... by myself. That's right, two kids, an extremely heavy wheel chair, and a huge backpack full of equipment. Noah doesn't get to go out a lot. Too much stimulation coupled with too many supplies = stressful. But since I didn't have a nurse today and Oliver definitely cannot stay inside all day, I knew I had to put on a brave face and go somewhere. It actually turned out a lot better than I thought it would be and I only had to pull over once while driving there to suction Noah. I'd say it was a pretty successful trip.

Nathan got this candid picture of me with the backpack on getting ready to head out with both boys.

Our first stop was the Disney Store.

He looks a little overwhelmed but he didn't cry.... He's so brave!

Then we walked down to the little indoor playground to let Oliver get some energy out. By this point Noah had, had enough of his wheel chair so he took a cat nap on the seat.

I put Noah on the slide a few times and his face was priceless! I couldn't exactly take a picture though since I was holding 30lbs of chunky baby. But just take my word for it, it was so cute! Then we went and ate lunch and had ice cream at the food court. Noah slept through the entire meal. We sat beside an older couple and their grand daughter. They kept looking over at Noah and smiling and saying how sweet he is. I think it was a good learning opportunity for the little girl who look to be about 7 or 8. When we got up to leave they all said bye to us and the little girl said, "Bye bye, cute baby!" It was nice. Then Oliver decided we needed another round of Disney before heading home.

I love this picture of Noah!

Captured their personalities perfectly.

Oliver made Noah stop fussing when he put this toy in his face.

Yes, but....

Warning.... this is an honest post. I love my children and I hope that I show that enough [doesn't everyone?]. But these are real thoughts, real emotions, and real conversations I have with myself and others.

I had a friend ask me the other night Do you ever just wish that Noah would pass so that he wouldn't be this way anymore?

It was a very honest question and I gave a very honest answer of yes, but....

Honestly, I have thought about it before. In this world Noah is so limited. He tries, he tries so hard which is why I will never give up on him. But it hurts my heart. I hurt with him every time I see him crying because I just don't know what to do. And he can't tell me how to fix it, no one can.

Whenever someone asks me about Noah's prognosis for this disease it breaks my heart. I have to be honest and say that everything that I have read says that Noah will not make it past adolescence. But then I always add a glimmer of hope saying that there are miracle stories of people with Connatal PMD that are in their 20s and doing just fine. I like to think that Noah will be that miracle. But we just don't know.

Noah has already started the game with so many things against him. He has the trach and g-tube. He has a visual impairment that has categorized him as legally blind. He has seizures and muscle spasms. A lot of these symptoms don't come until later in a lot of patients with PMD. It just seems so unfair that he has drawn the shortest, crappiest stick in the whole pile of short, crappy sticks. It makes a horrible disease even worse when you see how badly it is affecting him. And it sucks. It just sucks.

Now here is where the but part of my answer comes in...

But then I think about what he would be like if he didn't have this disease. He wouldn't be the Noah that I love so much. Of course I would love him because he's my baby. But if he were to wake up tomorrow, completely healthy and cured, trach and g-tube free, I wouldn't know what to do with him. This disease has made him who he is and it has made me who I am. People always say that their disease or sickness doesn't define them but of course it does! You can't tell me that a diabetic would keep taking insulin and monitoring sugars if they woke up disease free. No way! Same with Noah. He is who he is because of this disease and I love him more than anything. So in a way I am thankful and glad for his disease. PMD made my Noah and I wouldn't trade him for anything.

Which is why I can't give up on him. It is why I fight for him every day. Arguing with doctors and therapists who think they know what is best. They don't know PMD and they certainly don't know Noah. Sometimes he is hard for even me to figure out but I do the best I can and I hope and pray every second that I am doing enough. Saying enough. Being enough for him.

So I guess the real answer to the question is that I just wish that whatever amount of time we are given with Noah is spent in the best way possible. I wish he wouldn't hurt or cry or be frustrated with his body that simply won't do what he wants it to do. I have to believe that he understands me when I tell him I love him. I have to believe that he can see my face and know that he is the most special thing in my life. I have to believe that he is a miracle.

Oliver

I write a lot about my struggles relating to Noah but lately I've been struggling to figure out Oliver. He is such a good kid. I mean SO good. He is beyond smart and very polite for being 2 1/2 years old. I love him to pieces and I wouldn't trade him for the world. But these days he has been very 2. And by that I mean "terrible 2." If you've ever had kids or been around young ones for any length of time you will know what I mean. It has been hard, really hard.

My 21 year old brain sometimes cannot comprehend everything that we deal with everyday for Noah's sake. I cannot imagine what it must be like for Oliver. For the most part I can say that he has adjusted quite well to our situation. He has never tried to do anything too crazy to Noah like pull out his trach or something *knock on wood.* He doesn't mess with Noah's machines or supplies, except to put on his gloves and mask and use the stethoscope to listen to Noah and make his official diagnosis that he sounds "junky." But there are days when we have a couple of therapists in and out along with the nurses that are here 24/7 and it really can be a lot to take in.

I have no idea what it is like to have a sibling with a disability. I have no idea what it is like to take a back seat to your brother or sisters needs. I will never know, I suppose. I just hope and pray every day that I can show him I love him and try not to do too much emotional damage along the way.

For now I will just respect his emotions and validate his feelings. If he's mad at me then fine, he can be mad but I still love him. If he's sad I will hold him. I just want to make sure that he knows he is important and loved and special.

*******

To my Oliver,

I have loved you since the very night I learned you were in my belly. The day you were born was the happiest day of my life. I cannot imagine not having you here with me and I love you so, so, so much. I am so sorry that things had to happen this way for you and your brother. We wanted to give you a sibling that you could play with, learn with, and laugh with for the rest of your life. Instead you were given someone so much more wonderful than that. You were given an angel named Noah Jack. You two are the perfect pair of brothers. You are so smart. You understand things that we teach you about Noah, his trach, his gtube, his equipment, everything. And Noah loves you so much. I love seeing his face light up when you are around. He really does love you, Oliver. And I know you love him. I am sorry that this is so hard on you, baby. I really am. I want your life to be easy but it never is. Not for anyone. And having Noah for a brother will prove to be the greatest blessing of your life, I promise. I know you are only 2 years old right now but I hope that when you read this someday you will know that I am right. And you will know that I love you. And you will know that I understand you and I understand how utterly painful this all is. I know it's hard. I struggle every day right along side you. But I'm still here. We're still here together. Please know that I love you with my whole heart. You are my world and I am sorry for every time that I have let you down. I want to be your hero. I want to be your shining light, your beacon to come back home to an open heart full of love. You make me want to be a better Mommy. I am trying. I am trying so, so hard to be the best person I can be for you. You are my world, please never forget that. I love you more than I can even express. You make me so happy. Please keep being exactly who you are meant to be. We will get through this together. I love you, Oli Bear.

           Love, 

           Mommy

Belly Laughs

Today as I sat in my dark living room at 3 in the afternoon, rocking my sleeping baby who had spent the past hour screaming for reasons unknown to me, tears came streaming down my face. It was not a good time. I started a pity party.

Why does this have to be so hard? Why does he cry like this? Why can't I fix it?

I was mentally writing a rough draft for a blog post that probably would've been a little unflattering as I spilled my guts and made everyone feel so, so sorry for me. I'm so glad I did not write that post and I get to write this one instead.

It was not pretty, to say the least. Just as I was in the throes of completely and utterly gut-wrenching sobs something so amazing happened. This is probably the single most amazing moment of my entire motherhood, besides the actual births of my children.

Noah opened up his eyes and stared straight up at the ceiling. Then he let out the biggest belly laugh I have ever seen. He was laughing so hard that I could actually hear him laughing without his speaking valve on! I began to sob even harder knowing that this was God intervening at a most crucial and beautiful time. Noah continued to let out these huge laughs while simply looking at the ceiling. I wasn't touching or tickling or rocking him. Nothing. He was just happy and probably making fun of Mommy a little bit for being such a cry baby.

I started laughing with him through my tears. It was truly the most special and wonderful moment. I once again learned something very important from Noah. If he can laugh those big, beautiful belly laughs and find a reason to smile, even if it's just at the ceiling, then I have no reason to cry or feel sorry for myself. Noah is the one with the diagnosis, not me. If he is smiling then I can smile, too.

New Wheels

Noah got a new set of wheels today... His first wheel chair!!!

This thing is awesome. It has a royal blue frame with a red and black seating system that has "Noah Jack" embroidered on the back. And it looks so tiny! It's truly adorable.

And the best part is, is that Noah absolutely loves it. He actually fell asleep in it today which I take as a very good sign that he is comfortable in it.

It has a tray that we can slide on the front so he can have toys or just use it to rest his arms on. It also has an IV pole on the back so we can hang his feeding bag [or my purse] from. It has a tilt function so we can tilt him backwards if he starts to get tired or if we need to change his position so he doesn't get sore on his cutie booty.

The seating system can also come off so the frame can fold for storage and transportation. Not really sure how all of that is going to work yet because it seems like kind of a hassle to break down the wheel chair and then set it back up every time. Hopefully it will fit on our car without needing to fold it down.

If you are feeling generous here is the link to our fundraising page where you can donate money to help us purchase a wheel chair accessible van.