It's funny (well not really funny) how some parents worst nightmare for their child is something that I would sell my soul to have.
A newborn having jaundice is an OMG moment for a new mom. A premature baby getting diagnosed with Cerebral Palsy is a devastating blow. A pediatrician mentioning Down Syndrome markers concerning your week old baby is heart breaking. All of these things are world changing, Earth shattering moments for any parent. And I don't want to down play the significance and the challenges that any of these diagnoses bring.
But I find it funny, ironically so, that these are all things that I have dealt with and I prayed that Noah would be diagnosed with. That's right. I prayed for a baby with Down Syndrome. I prayed for a child with Cerebral Palsy. I prayed for an answer.
Which is what I got, but not one I wanted.
Those other conditions have been researched and written about. There are people in my community to meet face-to-face to talk about the diagnosis. With PMD there isn't much to read. There is so much uncertainty. There is no one within 100 miles of where I live to reach out to!
I am still having trouble, obviously, accepting Noah's diagnosis. It has not been an easy one to digest. Even with as much research, reading, and learning about PMD that I have done since we found out, it's not enough.
I feel silly saying, "I would rather be dealing with something simple like CP." I feel silly because I know CP is a worst nightmare for a lot of people and it's not really simple at all. But that's how I feel sometimes. Even if Noah has to be special needs, why can't it be something that people know about?
I remember researching Down Syndrome when we were still in the genetic testing phase. I was excited! I thought I had finally figured it out! Noah has some similar features and a lot of things could be explained with Down Syndrome. I was heartbroken, sure. I would stay up all night looking at pictures and reading stories on a Down Syndrome forum and just crying. I knew it would be hard but it would be so much easier to know what it was. I had accepted it and was ready to move on to find ways to help him. When the test came back negative for everything, I was still so sure that it was Down Syndrome I even mentioned it to his doctor. I was still clinging to my little version of "hope."
That was the same day we were told about Noah's MRI results and Pelizaeus-Merzbacher Disease. The doctor told us that we needed to "be realistic" when it came to what we could expect Noah to be able to do. He didn't tell us much else except that we would have to do a blood test to confirm for sure. Needless to say, I was reeling. I was in a state of shock that I cannot accurately describe. I cried all the way home from the hospital and then cried myself to sleep when we got home.
It was not simple anymore. It was not Down Syndrome, like I had hoped. It was not Cerebral Palsy, which was my second guess. It was something much worse, with a name I couldn't even pronounce. My worst nightmare had suddenly gotten 10 times darker and a thousand times more confusing.
Why can't it be simple?
Wednesday, October 30, 2013
Saturday, October 26, 2013
Pumpkin Patch!
Today we took Noah and Oliver to the pumpkin patch for pictures!
This is us last year...
Yes. Noah really was that tiny, my hair was that short, and Oliver is still that stubborn. I love pumpkin patch pictures so even though today's forecast called for rain, I decided to go for it and pray we didn't get too wet or too muddy.
Overall, it was a pretty good trip. Noah gets pretty overwhelmed by anything outside of our house. He cried most of the time and his eyes are closed in every picture. We have to walk a pretty fine line between taking him out and letting him experience different people and places without exposing him to too many germs that could make him very sick. I wish we didn't have to be hermits in the fall and winter but it's just something we have to do to keep Noah out of the hospital. I think the pictures are still pretty stinkin' cute!
Tuesday, October 8, 2013
Good Things
This afternoon we got back from our visit to Houston. Noah, his nurse Brittney, and I took a trip to see the team at Texas Children's Hospital. We arrived yesterday around noon and Noah had an appointment for a Swallow Function Study scheduled at 1 pm. After wandering around the hospital a bit we finally found the right place. Noah was taken into a radiology room where they typically do x-rays. After changing him into a gown and getting an x-ray of his chest, the Speech Pathologist came in and asked a million and one questions. Actually, everybody that we saw asked a million and one questions. One, because he's a new patient and two, because of his super-rare-I've-never-heard-of-that-in-20-years-of-practice disease that he has.
Anyway, after all of the questions it was finally time for the study. Noah had one done back when he was around 5 weeks old while he was still in the NICU. I was not present when the study happened so this was all new to me. Basically they strapped him in a car-seat type of chair and wedged him in between the machine that takes the pictures and the wall, then they turned off the lights. I had to step behind the lead wall since I am pregnant so I wasn't able to get the best pictures. Brittney was able to feed him and they started off with a thick, pudding-like mixture of baby food and barium dye. Noah pretty much hated the whole experience but he did manage to swallow most of the thick stuff and only a tiny amount went into his airway. Then they tried a thin liquid, apple juice mixed with barium dye. The thin liquid was kind of hard for him to control in his mouth and it ran off the back of his tongue and down his throat. The good part is, is that he was still able to protect his airway and did eventually swallow it. Then they tried what they call "nectar thick" consistency. This is the one that Noah handled the best. It is thinner than the baby food so his muscles didn't have to work as hard to squeeze it down to swallow. But it is thicker than liquid so he has more time to control it in his mouth without it falling off the back of his tongue. Noah does tend to hold and pool the food right at the piriform sinus, where the esophagus and the trachea meet. Unfortunately this means that Noah is always at risk for aspirating whatever food or drink he consumes, which is also true for just his own saliva. But we have to weigh the pros and cons.
Cons are, obviously, risk of aspiration. Which could turn into pneumonia. The lungs are supposed to be sterile so when you have things like food or even saliva that get in there on accident, it creates bacteria and lots of yucky things that are not good. The pros, however, seem to outweigh his risk. The good thing about letting him have tastes of food is that it will become a pleasurable experience for him. Not so much right now because it's new, but I'm hoping that the more we try with him the more he will want to eat and swallow. Also, the more he does swallow, the stronger and more coordinated the muscles will get. Over time, the process of swallowing will become more streamlined and he won't have to work so hard once his muscles and brain learn how to do it.
Right now we are allowed to start with small tastes of nectar-thick foods a few times a day. He is already on aspiration precautions but we have to be extra careful when doing the tastes. I will confess that while I was watching the screen, seeing Noah actually swallowing real food that my eyes got a little bit teary. This is such a big accomplishment for many children with a tracheostomy. Some may go their entire lives never having tasted a thing. But for Noah it is EXTRA BIG! He has so many set backs with his neurological disorder but I know he is making great strides. I know what he is capable of and I am glad that I made this trip so that someone else can see it, too.
Then this morning we had an appointment with the Aero-Digestive Team. This is pretty much like the Trach Clinic that we go to at Dell Children's. We saw a GI doc, Pulmonary, and ENT. I got to tell Noah's history to each of them, which I absolutely love doing. Seriously. I love talking about Noah to his doctors. Especially when they know nothing about PMD. I turn into the expert and I love being right. Okay, enough about that. They all knew that my goal for Noah is decannulation. So they were all examining him with that goal in mind to see if he would be a candidate.
So basically the GI and Pulmonary didn't have a lot to say. They pretty much deferred to the ENT who is apparently a vocal cord expert. She did a scope in the office while he was awake to look at his cords. They put the camera through his nose and down the back of his throat to take a look at his cords. We did see that his adenoids are very large which would make his airway smaller. And then we were finally able to see the cords past all of his secretions. He was screaming and crying so we got a pretty good view of....
Yes, that's right. Vocal cords are moving. And moving means not paralyzed like every single doctor in Austin has told us since he was first trached. SO the good news is that he does not need any kind of vocal cord surgery.
The ENT wants him to be able to tolerate his PMV during all waking hours and then we will progress to capping his trach. Capping means completely blocking his trach so that his only airway is his nose and mouth. Once he tolerates capping, he will have a capped sleep study. If those results are good then out comes the trach! Seems pretty easy but at this point Noah only tolerates his PMV for about 30 minutes at a time. It will be a kind of long process but it was great to hear from the whole team of doctors that Noah seems to be a good candidate for eventually getting his trach taken out.
So the plan for now is a triple-whammy appointment at the end of November. Noah will be back in the operating room at Texas Children's having his adenoids removed since they are huge! While he is in there he will also be having Botox injections to his salivary glands to see if that helps with his oral secretions. And she is going to do a scope, just like the one he had done last week so she can see everything for herself. Might as well if he's already good and sleeping.
Lots of exciting things coming up for us so please keep praying that we are moving in the right direction. Pray for Noah that we will continue to witness a true miracle here on Earth. And please pray for me, as well. I am in a constant internal struggle as to what is the right thing to do for Noah and our family. I pray that I am doing what is good and right but only time will tell.
Thank you for loving our sweet Noah and the rest of our growing family.
Anyway, after all of the questions it was finally time for the study. Noah had one done back when he was around 5 weeks old while he was still in the NICU. I was not present when the study happened so this was all new to me. Basically they strapped him in a car-seat type of chair and wedged him in between the machine that takes the pictures and the wall, then they turned off the lights. I had to step behind the lead wall since I am pregnant so I wasn't able to get the best pictures. Brittney was able to feed him and they started off with a thick, pudding-like mixture of baby food and barium dye. Noah pretty much hated the whole experience but he did manage to swallow most of the thick stuff and only a tiny amount went into his airway. Then they tried a thin liquid, apple juice mixed with barium dye. The thin liquid was kind of hard for him to control in his mouth and it ran off the back of his tongue and down his throat. The good part is, is that he was still able to protect his airway and did eventually swallow it. Then they tried what they call "nectar thick" consistency. This is the one that Noah handled the best. It is thinner than the baby food so his muscles didn't have to work as hard to squeeze it down to swallow. But it is thicker than liquid so he has more time to control it in his mouth without it falling off the back of his tongue. Noah does tend to hold and pool the food right at the piriform sinus, where the esophagus and the trachea meet. Unfortunately this means that Noah is always at risk for aspirating whatever food or drink he consumes, which is also true for just his own saliva. But we have to weigh the pros and cons.
Cons are, obviously, risk of aspiration. Which could turn into pneumonia. The lungs are supposed to be sterile so when you have things like food or even saliva that get in there on accident, it creates bacteria and lots of yucky things that are not good. The pros, however, seem to outweigh his risk. The good thing about letting him have tastes of food is that it will become a pleasurable experience for him. Not so much right now because it's new, but I'm hoping that the more we try with him the more he will want to eat and swallow. Also, the more he does swallow, the stronger and more coordinated the muscles will get. Over time, the process of swallowing will become more streamlined and he won't have to work so hard once his muscles and brain learn how to do it.
Right now we are allowed to start with small tastes of nectar-thick foods a few times a day. He is already on aspiration precautions but we have to be extra careful when doing the tastes. I will confess that while I was watching the screen, seeing Noah actually swallowing real food that my eyes got a little bit teary. This is such a big accomplishment for many children with a tracheostomy. Some may go their entire lives never having tasted a thing. But for Noah it is EXTRA BIG! He has so many set backs with his neurological disorder but I know he is making great strides. I know what he is capable of and I am glad that I made this trip so that someone else can see it, too.
Then this morning we had an appointment with the Aero-Digestive Team. This is pretty much like the Trach Clinic that we go to at Dell Children's. We saw a GI doc, Pulmonary, and ENT. I got to tell Noah's history to each of them, which I absolutely love doing. Seriously. I love talking about Noah to his doctors. Especially when they know nothing about PMD. I turn into the expert and I love being right. Okay, enough about that. They all knew that my goal for Noah is decannulation. So they were all examining him with that goal in mind to see if he would be a candidate.
So basically the GI and Pulmonary didn't have a lot to say. They pretty much deferred to the ENT who is apparently a vocal cord expert. She did a scope in the office while he was awake to look at his cords. They put the camera through his nose and down the back of his throat to take a look at his cords. We did see that his adenoids are very large which would make his airway smaller. And then we were finally able to see the cords past all of his secretions. He was screaming and crying so we got a pretty good view of....
MOVING VOCAL CORDS!!!
Yes, that's right. Vocal cords are moving. And moving means not paralyzed like every single doctor in Austin has told us since he was first trached. SO the good news is that he does not need any kind of vocal cord surgery.
The ENT wants him to be able to tolerate his PMV during all waking hours and then we will progress to capping his trach. Capping means completely blocking his trach so that his only airway is his nose and mouth. Once he tolerates capping, he will have a capped sleep study. If those results are good then out comes the trach! Seems pretty easy but at this point Noah only tolerates his PMV for about 30 minutes at a time. It will be a kind of long process but it was great to hear from the whole team of doctors that Noah seems to be a good candidate for eventually getting his trach taken out.
So the plan for now is a triple-whammy appointment at the end of November. Noah will be back in the operating room at Texas Children's having his adenoids removed since they are huge! While he is in there he will also be having Botox injections to his salivary glands to see if that helps with his oral secretions. And she is going to do a scope, just like the one he had done last week so she can see everything for herself. Might as well if he's already good and sleeping.
Lots of exciting things coming up for us so please keep praying that we are moving in the right direction. Pray for Noah that we will continue to witness a true miracle here on Earth. And please pray for me, as well. I am in a constant internal struggle as to what is the right thing to do for Noah and our family. I pray that I am doing what is good and right but only time will tell.
Thank you for loving our sweet Noah and the rest of our growing family.
Before the swallow study when Noah was blissfully unaware of what was coming.
X-ray image of Noah during the study.
My view of Noah's swallow study.
Tuesday, September 24, 2013
Two Feet!
We have some very exciting news! Noah is going to be a BIG brother! Baby Henderson is due May 3rd, 2014.
Please let me tell you that I am hanging on somewhere in between scared out of my mind and extremely happy. I have been experiencing lots of "morning" sickness as well as being so stinkin' tired! Oliver is so excited and tells me we are having a girl baby. He reads his "Big Brother Book" every night before bed. I love that he can understand the concept this time around. He was so young when I was pregnant with Noah that it pretty much went right over his head. He is already such an awesome brother to Noah so I know he will do great with the new baby. And I know Noah will love the baby, too. I've been babysitting a little 4 month old baby girl on Thursdays for the past few weeks and Noah just loves to hear her talk and laugh. He smiles so big when we put them on the floor to play together. He is such a sweet boy!
I am having routine prenatal care as well as seeing a Maternal-Fetal Medicine Specialist. They are "high risk" doctors that deal with situations like ours. I am considered high risk for two reasons: Noah having a genetic condition and also for having preterm labor with him. We will be trying to determine gender fairly early, around 12 weeks at my next appointment. If we discover the baby is a boy we will be going forward with some invasive procedures to test for PMD. My doctor said the chances are overwhelmingly in my favor of not having another PMD baby since I'm not a carrier of the mutation. But if we want to know for sure we have to test.
Please keep all of us in your thoughts and prayers. This is a scary/exciting/emotional time for our whole family. But we have to give it to GOD because only He knows what the plan is.
Here is a post that I wrote right when I found out I was pregnant. Please read it and know where my heart and mind are set for this new life I am nurturing.
**********************************
8/23/13
8/23/13
I know I will not publish this entry for awhile. But I want to write it so I know exactly how I felt at this moment. Last night, August 22, 2013, I took a pregnancy test and it was positive. I was in immediate shock. I began to shake and had butterflies in my stomach. I honestly couldn't believe it. But it was such a clear, strong positive that I knew it was right.
I thought I should be freaking out. But I honestly wasn't. I have had the biggest sense of calm come over me in a way that I have never felt before. I said a silent, but lengthy prayer to God in Heaven. I told Him that I know this is His plan and I know He will make this make baby safe and healthy. That it my biggest prayer for this child. Healthy. Period. I know God knows what is in my heart. He knows my inner most desire for this baby. And I have complete trust and faith in Him that everything will be fine. Nothing goes unplanned by God.
I feel like this baby is a chance for healing. I have so much emotional trauma that haunts me from Noah's birth and this is a chance to mend my heart. I don't want anyone to think that I am "replacing" Noah with a baby that is healthy. That's not what I'm doing, by any means. I love Noah with all of my being. And I love Oliver just as fiercely. And this new baby will be a great opportunity for both of them. Hopefully for Noah, the baby will be his greatest therapist. As the baby grows and learns to do new things, maybe Noah will learn along with him or her. And for Oliver, he will have someone to play with and someone that gets how hard it is to have a disabled sibling. Also, if Nathan and I pass away, Oliver and his sibling will be able to share the responsibility of caring for Noah.
I love my children more than anything else in this world. And I love this new baby. This new, tiny, still only a few cells, baby just as much. I know it will be hard. Since when is having children easy? I know the challenges we will face. But I know we will get through the tough times together as family and become just a little but stronger each time.
If you couldn't tell I'm pretty excited for this new gift to our family. Nathan is excited, too. And just a fun fact for you: I have been pregnant every year since 2010. Woah! This baby is due May 3, 2014 :)
8 weeks
Friday, September 20, 2013
Timing
Sorry it's been awhile but I've been extremely tried lately. Usually I write after I put Oliver to bed but recently I find myself knocked out before I can even manage a shower. I really do feel bad for not posting anything in such a long time so please accept my apologies and my promise to try to stay on top of my posts!
Nothing super exciting is happening with Noah lately. I have posted a few new pictures and videos on our What Do You Do With A Miracle? Facebook page of things we have been doing but as far as medically relevant updates.... I got nothin'! Which is good! It means he is stable and just being Noah. Our next big appointment is coming up though on the 30th.
Noah will be going to Dell Children's and put under anesthesia for a scoping procedure. Some of you may remember when he was a teeny tiny newborn he had to have this done. He was about 6 days old. I was completely terrified about him being put to sleep and completely terrified of what they would find during the procedure. I still get really nervous about him going under because sometimes it can be hard for kids with low muscle tone to fully wake back up and be able to breathe on their own. But it's a really fast, simple procedure and it will answer a lot of questions about Noah's airway. I will definitely post an update after the appointment!
But what I really wanted to write about today is timing. Not ours, but God's. Sometimes things just happen so beautifully in our life and we take all the credit. And then on the flip side when things go wrong, we blame someone, something, or even God himself for "screwing up." But God doesn't screw up. He doesn't make mistakes. He is the most Perfect, the Creator, the Giver of Life, the Healer. He makes it all happen whether it is what we want or not. It is what we need. And that's why He makes it happen. And it doesn't matter why these things happen. There is no need to ask questions. It doesn't matter why someone is sick, why you lost your job, why someone wins the lottery. It's doesn't matter because we will never know the answer. All we need to know is that God is in control.
I am writing this to serve as a reminder to myself. Because a lot of times I get caught up in the "why" of everything, especially when it comes to Noah. But if I can just hold on to my faith and remember that this is all planned by the Ultimate Planner then I can relax a little bit and try to enjoy life instead of question it.
Nothing super exciting is happening with Noah lately. I have posted a few new pictures and videos on our What Do You Do With A Miracle? Facebook page of things we have been doing but as far as medically relevant updates.... I got nothin'! Which is good! It means he is stable and just being Noah. Our next big appointment is coming up though on the 30th.
Noah will be going to Dell Children's and put under anesthesia for a scoping procedure. Some of you may remember when he was a teeny tiny newborn he had to have this done. He was about 6 days old. I was completely terrified about him being put to sleep and completely terrified of what they would find during the procedure. I still get really nervous about him going under because sometimes it can be hard for kids with low muscle tone to fully wake back up and be able to breathe on their own. But it's a really fast, simple procedure and it will answer a lot of questions about Noah's airway. I will definitely post an update after the appointment!
But what I really wanted to write about today is timing. Not ours, but God's. Sometimes things just happen so beautifully in our life and we take all the credit. And then on the flip side when things go wrong, we blame someone, something, or even God himself for "screwing up." But God doesn't screw up. He doesn't make mistakes. He is the most Perfect, the Creator, the Giver of Life, the Healer. He makes it all happen whether it is what we want or not. It is what we need. And that's why He makes it happen. And it doesn't matter why these things happen. There is no need to ask questions. It doesn't matter why someone is sick, why you lost your job, why someone wins the lottery. It's doesn't matter because we will never know the answer. All we need to know is that God is in control.
I am writing this to serve as a reminder to myself. Because a lot of times I get caught up in the "why" of everything, especially when it comes to Noah. But if I can just hold on to my faith and remember that this is all planned by the Ultimate Planner then I can relax a little bit and try to enjoy life instead of question it.
Wednesday, September 4, 2013
Home
There were a lot of preparations that went into bringing Noah home. We had to get set up with a nursing company as well as a durable medical equipment company. About a week before discharge, a guy from the equipment company came and dropped off all of Noah's equipment. Overwhelming is an understatement. He showed me how to work all of the machines and basic trouble shooting. Then he left. And I had a living room full of stuff. Where do I put it all? How should I set it up so that it's easy and functional? That was totally not something I was really prepared for. But in the end, with some tweaking from nurses as we went along, everything has a place and most things are labeled so that it really is easy and functional.
We had to do 2 nights of "rooming in" at the hospital. Rooming in means that we had to do 100% of Noah's care for 2 nights. The nurses didn't do much except come in and check on us every so often. They were there as a safety net in case something happened. We had to bring all of our own equipment, too. The first night was a Thursday night when Nathan and I stayed. Then Friday night, my Mom came with me since Nathan had gone back to work. Everything went well on both nights and we were all set for discharge on Tuesday!
On Tuesday, Nathan and I were so antsy. We arrived at the hospital a little before noon since we were told that discharges usually happened between 12 and 2. There was a lot of waiting around and there was also a little girl in very critical condition that was getting admitted right next door to us. Needless to say, we were very low priority and hardly saw any nurses the whole time. Finally I stepped out in the hall and asked what was going on.... we were so beyond ready to go.
We got Noah in his stroller and walked up and down the halls of the NICU, saying our goodbyes to everyone that had taken such good care of our baby. They truly saved his life and they mean more to me than I can ever say.
It was a weird feeling driving away. That was it. It seemed so anti-climactic for such a traumatic time in our lives. I was sad and scared and happy and anxious all at the same time. I knew we were trained so well about how to take care of Noah's medical needs. But I still didn't know him as my baby. He was so hard to figure out. He cried and slept. Slept and cried. I had nurses telling me he was having seizures and telling me to medicate him because he was crying so much. It was frustrating that I couldn't take care of him without someone standing over us making sure I was doing it right. I still get frustrated in that way sometimes. After a few blurry months things did get better. I figured Noah out just as he had to adjust to new surroundings and life outside the hospital.
It was hard and continues to be a challenge each day. But I am so glad we are home. I would never have it any other way. Yes, our home is a mini-hospital and we have people here all the freaking time. But I am so in love with my Noah and so happy he gets to be home with us. This first year home has taught me so many things. Not only medical things but things about myself. I had to learn how to be an advocate. To stand up for myself in a world where everyone has their own agenda. I had to learn how to network with others and research things to help Noah. I know I am a much different person now. Maybe slightly more grouchy but also stronger and more independent than I ever thought I could be or would have to be.
Happy 1 year Home-iversary, Noah Jack!
I love you with all of my heart!
On Tuesday, Nathan and I were so antsy. We arrived at the hospital a little before noon since we were told that discharges usually happened between 12 and 2. There was a lot of waiting around and there was also a little girl in very critical condition that was getting admitted right next door to us. Needless to say, we were very low priority and hardly saw any nurses the whole time. Finally I stepped out in the hall and asked what was going on.... we were so beyond ready to go.
And that was it.... we were free!
We got Noah in his stroller and walked up and down the halls of the NICU, saying our goodbyes to everyone that had taken such good care of our baby. They truly saved his life and they mean more to me than I can ever say.
It was a weird feeling driving away. That was it. It seemed so anti-climactic for such a traumatic time in our lives. I was sad and scared and happy and anxious all at the same time. I knew we were trained so well about how to take care of Noah's medical needs. But I still didn't know him as my baby. He was so hard to figure out. He cried and slept. Slept and cried. I had nurses telling me he was having seizures and telling me to medicate him because he was crying so much. It was frustrating that I couldn't take care of him without someone standing over us making sure I was doing it right. I still get frustrated in that way sometimes. After a few blurry months things did get better. I figured Noah out just as he had to adjust to new surroundings and life outside the hospital.
It was hard and continues to be a challenge each day. But I am so glad we are home. I would never have it any other way. Yes, our home is a mini-hospital and we have people here all the freaking time. But I am so in love with my Noah and so happy he gets to be home with us. This first year home has taught me so many things. Not only medical things but things about myself. I had to learn how to be an advocate. To stand up for myself in a world where everyone has their own agenda. I had to learn how to network with others and research things to help Noah. I know I am a much different person now. Maybe slightly more grouchy but also stronger and more independent than I ever thought I could be or would have to be.
Happy 1 year Home-iversary, Noah Jack!I love you with all of my heart!
First time at home in his bed.
Tuesday, August 27, 2013
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?
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.
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.
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