Paging Dr. Truman, Dr. Truman…

It is hard to find a place to start when it comes to the medical side of Truman.  Mainly because we have no real answers so every experience ends with, “Well, we really don’t know what is wrong, but we know something is wrong.” 

Truman has been seen by specialists from the top of his head to the tip of his toes.  He has been poked and prodded and then poked and prodded some more.  A basic rundown of Truman’s situation…

Truman started having seizures at 5 days old.  Actually, I think it was happening earlier than that…in fact I think he was having something like a seizure when I was still pregnant.  I remember feeling him jerk around in there and commenting that it felt like he was having one.  At that time we laughed and joked about having a very active child.  After his arrival he struggled for the first 24 hours to breath and was on oxygen.  Each time I held him I just “knew” something was wrong.  He was beautiful and tiny and perfect but something just didn’t feel right.  When he started having the seizures a few days later I wasn’t surprised.  Scared, but not surprised.  We ended up at our now home away from home, Children’s Mercy, in the NICU for a week.  They began the poking and prodding process.  We found out that he had low calcium levels and a few doctors felt like that was the answer.  But the nurses and another doctor told me that it wasn’t and looked at me in a way that made me realize that we were far from done.

We started seeing his neurologist who referred us to other specialists based upon his main symptom, Low Muscle Tone (LMT).  We saw GI doctors because of tummy issues…caused by LMT.  We had tests done that showed major issues with swallowing…caused by LMT.  We saw ENT…LMT.  We saw Physical Therapy…you guessed it, LMT.  We eventually landed in Genetics.  Our neurologist had already performed a lot of testing in the genetic area but they did some more.  Everything always came back negative.  We had some big scares when a syndrome or disease would be thrown around by the doctors.  Waiting for weeks on end for test results to come back while trying to pretend like our entire lives weren’t hanging in the balance. Negative.  But he did have LMT! 

The LMT has caused many developmental delays.  He crawled late, walked late, had difficulty growing…and now talking late.  We have a new version of time.  We call it Truman Time.  He has always eventually done everything he was supposed to do but just on his own timeline. 

Currently we are on what I call the “See you in 3 months” plan.  We see a doctor, they are excited by his progress, they say they wish they had more answers and then tell us to come back in 3 months.  I used to be terrified between visits.  I thought that he has some horrible syndrome and that we were losing valuable time.   That if we figured out what was wrong in time we could make it all stop, fix it and everything would be normal.  I also feared that it was one of the really, really bad ones.  The ones you skip over when reading on the Internet because it is too scary to even read about.  The ones that say “average age of death.”  I worried that we would find out it was one of those and we had wasted so much time without knowing that our time was short.

Now…well…I am usually OK with the 3 month plan.  It means that there is nothing major going on and we can just keep moving forward.  The fears still seep in occasionally but I know how to deal with them now.  In fact, right now we are waiting on some huge test results.  Huge.  We have been waiting 6 months and could wait another 6.  We are part of a genetic study that looks at the entire genome instead of just one little part specific to a syndrome.  The idea behind the study is to find out if Truman has anything wrong on any part of the genome.  If something shows up that info will be placed in a international computer system.  It will search for any other kids who have similar changes and check the symptoms.  If there is a match then we can hopefully start to see what could turn into a newly “found” genetic syndrome.  Someday there could be a Truman Meyers Syndrome based upon his participation.  Not exactly the fame I had hoped for…but if it can help a future child and his/her family know what the future holds then I think it is the best fame anyone could ask for.

If nothing comes back abnormal in this study we are literally at square one.  We have no idea if there is something “wrong wrong” or just a bit delayed.  It is an interesting situation to be in because we may literally never know what is going to happen.  So much for my desire to be “in control” at all times. 

For now we continue to do what we have always done…love him and provide him with opportunities to succeed.  Each day he shows us a little more and we are always amazed by every little step forward.  Many people hear the word “delayed” and assume that it is also mentally…and to this point that isn’t true in Truman’s case.  He understands everything that is said.  He follows high level directions, can identify letters and numbers and colors.  He can turn on an iPad by himself, find his game and play….which is advanced for some adults I know!  His ability to show us everything he knows is only limited because of his lack of speech.  But we are working on new ways for him to communicate and continue to offer him the same type of activities that any 3 1/2 year old would be interested in.  You should see him play Candy Land with his sister!  Whew!  He is a champ!

So…another long post for another long story.  I didn’t even talk about his submucosal cleft palette, laryngeal cleft, hearing issues, tubes or surgery…

Well, another post will have to cover that info…

Saying Goodbye...

I haven't written in, well, forever.  Actually almost a year.  It has been a strange year and for some reason I could never motivate myself to write.  I thought about writing a lot.  In fact I started a few posts and then ended up deleting them.  I would tell myself that I didn't "need" to write any more.  There were no major changes.  Life has been plugging along and it didn't seem like anything that someone would care to read about.  I then realized what I had done.  I had made this about other people and not about my need to get things out of my brain.  I went back to my "perfect" thought process...if my life wasn't going to encourage readership then it wasn't important enough.  Boo.

So I have decided it is time to return to writing with my original intent.  To be open and honest...with myself first and with anyone who is reading second.  I have been motivated today for a very specific reason.

Today was our last day of tiny-k Early Intervention.  The program we have been with since T was 4 months old.  The provide services for kids with special needs or developmental delays.  We have had physical, occupational and speech therapies with them for almost 3 years.  The program is only for birth to age 3 and Truman's third birthday is Friday.  We will no transition from tiny-k to the school district.  Which is completely overwhelming.

Our time with tiny-k has been incredible.  Truman and I (and very frequently my mom) have had weekly visits with our therapists since he was an infant.  I say "our" because they truly were "our" therapists.  They cared as much about me as they did Truman.  They held my hand, listened to my fears and helped get me through the tears.  Some days were full of excitement with giant strides but most days were simply continuing to work on all areas of my little man's development.  They were able to push him in ways that I never could.  They were able to encourage me to let go of some of my fears and let him fail.  We are so blessed to have had this time with them. 
Saying good bye today meant more than just the therapy visits.  It was also saying good bye to a lot of my beliefs on where we would be at this point in T's life.  When we started at 4 months old I believed we would have a few visits and he would catch up and everything would be just fine.  After the first few months went by I still believed that he would be able to eventually get there and we would move past our time with tiny-k.  I don't remember the exact moment when I realized that he wasn't going to graduate from tiny-k services before he aged out of them...but I do remember that at some point I came to terms with it. 

I set a new thought process in place...that he would be "fine" by the time he would need to move on to the school district.  Again, we would figure out what was "wrong" and "fix" it and all would be good in the world.  I never wanted to believe that he would enter the school system at age 3 with an IEP.  But here we are.

Today when the therapists left I didn't get to celebrate.  I didn't get to laugh at where we had been and find comfort in where we are today.  Truman didn't graduate. 

Tomorrow we will set down with the school district to review his evaluation and go over his IEP (Individual Education Program).  My son, at 3 years old, will already be labeled before we would even be thinking about kindergarten.  We will start his "permanent file." 

Growing up I was always terrified of my permanent file at school.  My grade, my behavior, my activities were all part of that dang file that somehow would make or break my future.  I remember hearing about standardized test being put in my permanent file as a first grader and freaking out that I hadn't done well enough. 

Now T will have his permanent file started for him with statistics and age appropriate development graphs, charts of his progress (or lack of) and an IEP of goals. 

My family has never had a child who struggled with school.  Not really.  Not like this.  Grade card time has always been a time of bragging and paying for straight A's.  I never got below a B...ever.  My nieces are geniuses.  Like really geniuses on the official IQ scale.  My daughter is an amazing student who is constantly excelling past her grade level. 

I don't know how to do this.  I don't know how to work the system of special education.  I don't know how to make sure he is getting everything he needs even with budget cuts and lack of resources.  I don't know how to fight for him.  And to be honest I don't think it is right that I have to start figuring it all out at 3 years old. 

So, we said good bye to a lot of things today.  To amazing women who have changed our lives.  To being a baby.  To pretending that everything is going to be "fixed" at some point.  To not having a permanent file.  To not having to fight for services.  To knowing what to expect.  To not admitting that T truly has special needs.

I don't think I am ready but I guess there is no looking back.

Little Guy Medical Update

I know that I haven't written in forever and a day. I have way too much to catch up on. But we had a very interesting day at Children's Mercy today that I need to write about. Writing helps me to work through my "stuff" when dealing with new information.


To start off Truman has been doing really great...in general. We have had some major leaps forward including the fact that he has really started walking! This is a huge, amazing, fabulous and crazy step in his development. (Get it...step?) He had been taking a few independent steps here and there but he really couldn't keep it up much longer than that. He turned 2 last week (yes, I will blog about that later) and suddenly he decided it was time. He still walks a bit like Frankenstein but he is really trucking. He now prefers to walk and will make that choice instead of going down to crawl. He isn't strong enough to stand up independently yet so he has to get somewhere to pull up. So amazing.

He was super sick at the end of January. We had 3 full weeks of misery (mama was sick too) with strep, sinus infections and bronchitis. Poor guy was just miserable. Three rounds of antibiotics later he seems to be on the mend.

Today we went to "the" Ear, Nose and Throat specialist at Children's Mercy. The doctor was recommended by multiple doctors we go to as a person who specializes in kiddos with muscle disorders and developmental delay. To be honest I was still a bit skeptical about the whole ENT Department at Children's (see early post) but I finally gave in. After waiting an hour we finally were introduced to Dr. Latz, who turned out to be just as great as everyone said she was.

She listened to our whole, long medical story. She was genuinely interested. She did the regular checking around and realized his ears were really full of wax. He has always had the waxiest ears! She said she couldn't see anything so they needed to be cleaned out before we did anything. She said the extra wax was actually good because it helps to prevent outer ear infections. Truman has actually never been diagnosed with a single ear infection! There have been comments by doctors about his ears being hard to look in because of the wax but she was the first to say that it was impossible to see anything.

So off we go to clean them out, under a microscope. Very gross yet very interesting. After the cleaning she looked in his ear with this super scope thing that also blew a little bit of air into the ear canal. The air helps to open up the parts and see behind the ear drum. Again...no other doctor has ever used one of those bad boys...including his ENT in Lawrence. She immediately saw some fluid behind the ear drum.

She decided we needed to get a hearing test...right then and there. Off we went and after an hour of waiting (can you tell I am tired of waiting today?) we were put in a little room together. First she put this little machine thing up to his ears to test them for ear drum movement. Both ears had normal "volume" but neither ear drum was moving. Shock #1.

Then she went in the other room and we sat in front of a stuffed alligator that had glowing eyes. On each side was a box with a stuffed animal that drummed inside. She began to speak with her voice coming from different places in the room. When he looked in the right direction the corresponding stuffed animal would light up and start drumming. Then the alligator’s eyes would glow to get his attention back to the center of the room. VERY INTERESTING! I had always wondered how they tested kid's hearing. It isn't like we can tell him to raise his hand when he hears the beep! After the talking part she started having sounds play around the room as well.

Shock #2...Truman didn't look for many of the sounds. He was sitting in my lap and I would wait for him to turn his head...and nothing. It seemed like the lower then tone the less he looked.

The technician came in and told me that he had failed that part of the hearing test. Wow.

The next test put a little tube thing in his ear attached to another machine. The machine measured higher pitched sounds and again if the ear drum moved.

Nope. He failed on his left ear. Shock #3. The good news was he actually passed on his right ear! Yea.

Back we head to the room with my mind going nuts. My kid can't hear? What? How is that even possible? He responds when talked to. He babbles and laughs. He watches TV. He knows his name and my voice. But he also won't turn and get his photo taken when I try to get his attention. He isn't talking words and has very few consonant sounds. All of the consonants he uses are non-explosive (i.e. m and n not c or t). He has always had balance issues...thought to be caused by his "low muscle tone."

When the doctor came back into the room she was actually not surprised. She already knew that he wasn't going to do well on the hearing test. The good news is that the hearing loss doesn't seem to be caused by nerve or physical issues. She thinks it is all caused by a major buildup of fluid behind his ear drums. He has major fluid and has NEVER HAD AN EAR INFECTION? Why the heck does he have fluid in his ears? She really wants him to get tubes in his ears to drain the fluid. She thinks that it will completely solve the hearing issue as well as help his balance.

Off we go to have a scope stuck down his nose so she could take a look at the palette and vocal cords. The first thing she sees is that Truman does indeed have a submucosal cleft in his palette. We have had 3 different doctors tell us he doesn't...including the doctor who sent us to the ENT. The cleft seems to be small but it is there all the same.

The next thing she finds is a Laryngeal Cleft or a small cleft in the larynx. The opening is what has caused him to have the nasal reflux and made him fail the last swallow study.

Crap--I never wrote about that. We did another swallow study almost last month and his nasal reflux and aspirations were actually worse than they were before. He went from being able to swallow a "nectar" consistency to having reflux on applesauce. Not a good thing. We were put back on thickener but this time it is a "honey" consistency which is as thick as you are probably imaging. Not fun. It also means no more ice cream, popsicles or anything else we can't thicken before it is swallowed.

Back to today. The Laryngeal Cleft has probably always been there. When he had his tonsils they were so big that they covered up most of the hole. When they were removed the hole didn't have anything to stop the fluid from flowing. This cleft is fixable. Basically she will go in with a syringe filled with this gel stuff. She injects the gel into the hole and it expands to fill up the hole. Hopefully this is a permanent procedure but we don't know that for sure. The great news is that it should stop all of the food/fluid from going back up into his nose!! No more choking, eye running, sinus infections, etc.!!!

She also saw that he has an "immature voicebox."  I am still not exactly sure what this means.  I understand that it is a muscle and it goes along with his low muscle tone...but I really don't understand how this affects him.  Or if it can get better.  Or if it has anything to do with the other stuff.  We had so much going on that this somehow slipped thru the cracks and I will need to revisit it on our next appointment.

She can do the tubes and the cleft injection at the same time. It will mean another time under anesthesia and an overnight stay at the hospital. She wants us to wait a bit because the hospital is full of really sick kids with the flu and RSV. She doesn't want to expose T to a secondary infection because his immune system sucks. It would not be a good thing for him to end up with a major case of the flu after surgery. She also wants to recheck the fluid to make sure that it is really sticking around. It could be there from his previous illness at the end of January...but she really doubts it.  So we will go back for a recheck mid-April with plans for surgery at the beginning of May.

So my child can't hear. He has a cleft palate and a hole in his larynx. What next?

We are looking at 2 different surgeries. The palate cannot be done at the same time as the hole and tubes. Apparently they don't usually fix them until around 4 years old. They might push up the timeline if he continues to have medical issues with nasal reflux caused by that space being there. She doesn't know how much problem it really is causing. Fixing the other parts will let us she just how bad it really is.

Lots of information. Still processing. My heart is breaking that my little man has not been able to hear all of this time. It is also terrifying. I can't imagine my son growing up without being able to hear. But I am not going to go there right now. I just can't.

The doctor thinks that he will get the tubes and the hole fixed and show us just how happy he is by talking and gaining muscle strength when he has the ability to balance. Wouldn't that be amazing??

Longest post ever...I wish I had something witty to say to end it. But I am exhausted and overwhelmed. What else is new, right? I am going to sleep on it and hopefully will be ready to deal in the morning.

Truman’s New Toy

The incredible therapists with tiny-k let Truman borrow a child size walker to see how he did.  He LOVES it.  At first he was a bit overwhelmed by the entire thing and like to just walk around it instead of actually using it to walk.  But this weekend he really got the hang of it and started zooming around! 

I took a little video but you will see at the end that his sister distracted him a bit.  After that point he just crawled over to her and tried to get her to play with him.  The whole point of the walker is to let him choose to use it independently….so I had to give up my video pursuits.

If I only had a brain…

The good news is that Truman has a brain!

OK…that was a bad joke.  Of course he has a brain!  And it is a beautiful one too.

We got the results from our neurologist finally.  He called us himself…which is one of the things we love about him.  It is also incredibly terrifying when I hear his voice.  Why would the doctor call if it was good news?  Right?

But it was good news…mostly.

His brain has “minor changes” that do not “raise any red flags or give a specific diagnosis.”  He has all of the parts and pieces and there is no evidence of degeneration.  All really great news.  Of course hearing that there are any “changes” makes my skin crawl but with no visual it is easier to to deal with.

The hard part is the thing we have struggled with throughout this entire process…we don’t have an answer.  We know something is wrong but we can’t figure out what it is. 

His neurologist understands our frustration.  Every test that we take we pray for a negative result but with every negative result we are further from understanding what is going on with our son.  He has tested and tested and tested and just can’t find the answer.  He cares enough to call us personally to talk through the next steps and to apologize for not being able to find a diagnosis.

Have you ever had a doctor apologize to you?  Me either.

So we will continue with physical, occupational and speech therapies.  We have an appointment with Cranio-facial in January along with another Swallow Study.  We are also due to go back to Genetics.  Every day we will keep working with him and trying to give him all of the support he needs to get stronger, gain balance, learn words, etc., etc.  In other words—we don’t stop fighting but we don’t know what we are fighting against.

It feels like we are flailing around in the dark just hoping to land a hit.  And it is so hard for people to understand.  I keep hearing “no news is good news…right?”  Well of course!  We do not want ANY of the things we have been testing for to be the diagnosis.  But maybe if we had a diagnosis we would know that we were doing the right things for him.  Or we would be able to prepare for the future.  Not knowing what could happen next is impossible. 

Good news…mostly.

MRI Tomorrow

We have officially hit the point we were hoping to avoid.  Tru was given until 18 months to walk or we would need to do an MRI to check out his beautiful brain.  Well, here we are at 20 months and still no walking…

Our very blunt neurologist (whom we love) in his French accent told us:
”We need to see if all of the parts of his brain are there.”

Hmmm.  Didn’t ever realize there as a chance that all of the parts wouldn’t be there.  After all he is living, breathing, crawling, babbling, hugging, kissing, splashing, laughing, etc. etc.  It didn’t seem like an option.  But, I guess it is.

The other thing we are looking for is the ratio of grey matter to white matter or something like that.  Apparently by this age the brain should look fully formed.  If you have an MRI any younger it is difficult to see everything because it is all still white and not differentiated.  I guess we can see if it looks “normal” or not. 

He will have to be put completely under because the MRI has to be done completely still.  He is 20 months old and will go under anesthesia for the 3rd time.  It never gets any easier.  The memory of him coming out of anesthesia after the tonsil surgery is still very fresh in my mind…and it is not a pleasant memory. 

We should also be receiving the results of some the genetic testing we did in September fairly soon.  Again—we are keeping our fingers crossed that everything comes back negative.  It is such a weird position to be in.  We are trying so hard to figure out what is going on with him but each time we test we hope to not find an answer. 

The good news is that I have reached a point where I no longer completely freak out every time we are waiting for an answer.  I can put it all in a box on the shelf and not deal with it every second of the day.  Occasionally the box decides to fall off the shelf and hit me the head making me crazed for a few hours.  Typically this happens at night when the house gets quiet enough for me to think.

Here we go again…

Don’t Cry for Me Argentina…

The other major update about Truman and one that I still don’t know how I feel about came from the eye doctor.  We took Truman in to make sure his vision was OK.  Sometimes balance issues and other delays can be caused by poor vision.  We also realized over a year ago that Tru didn’t cry tears.  He is a happy dude and doesn’t really fuss much anyway but when he did there was never a tear.  His eyes watered when he coughed or had crap coming out of his nose but he never had that big tear slide down his face that makes us all giggle.

The good news was that Truman has perfect vision.

The bad news is that the doctor is 99% sure that he was born without the “response tear gland.” 

Apparently there is a gland above your eye that fills with tears that come from an emotional response.  The gland as it fills has overflow that comes out of the eye and we call tears.  He told us that 2-4% of the population is born without the gland.

He told me that Truman will never cry tears.

Truman will not cry at a sappy movie, on his wedding day or when his child is born. He will never laugh so hard that he cries or put on a show of tears to get away with something.  He won’t cry when someone he loves passes away or breaks his heart.  He will never know how cleansing it can be to just let it all go and sob.  He will never experience the salty taste when his lips are coated with tears during a moment of pure sadness or joy.

I don’t know why this one has been so hard on me.  Maybe because it is so real.  So permanent. 

Because we don’t have a final diagnosis at this point I still can imagine that he is going to “grow out of it.”  It is still very possible that Truman will eventually catch up or at least get close and we will all breathe big sigh of relief.  Part of that is the assumption that he will grown to get married or have a child, have his heart broken and laugh uncontrollably.   But the truth is…we don’t know if that will happen.  At this point so much is unknown so it is much easier to imagine a “normal” life than anything else.

But this was a “never” moment.  And all of it really crashed down for a bit.  It still really hasn’t sunk in.  And I know it sounds a bit crazy to get so upset over such a relatively small thing.  But I come from a family of criers.  We cry at everything.  Dog food commercials, sappy songs, beautiful sunsets, funny stories…we are big with the tears.  I can’t watch Extreme Home Makeover because I literally boo-hoo from beginning to end. 

Will people think he is hard hearted or soulless when they realize they have never seen him cry?  I know it is sexist but I guess it is better that he is a boy since big boys don’t cry and all that crap.  (Don’t tell my Dad that…he is worse than all of us put together!)

Tears are a big deal.  Having to face a big reality is bigger.  Hiding in my closet so I don’t have to deal?  Possible.   

Medical Stuff

After a few weeks Truman is now doing so much better since he had his tonsils and adenoids removed.  It really is incredible to realize just how bad his breathing had become when compared to now.  He doesn’t snore anymore!  I used to be able to listen to him snore through the baby monitor and know that everything was OK.  Now I have to check on him all the time just to make sure!

That is the good part.

The bad part is that he is continuing to have issues with swallowing.  The issue actually goes back to birth.  He struggled as a newborn with nasal reflux.  Basically he would have milk or spit up come out his nose.  His eyes also watered and his nose was always stuffy and he got a lot of infections.  We had a swallow study done and the doctors thought that it was a muscle tone issue.  (See all the other medical posts to learn how much I love hearing THAT as a reason once again!)  Basically they thought that he wasn’t strong enough to swallow everything all the way down to his stomach so some would squeeze back up and come out his nose.  So we started thickening his formula to help weigh it down and make it easier for him to keep it down.  And it worked!

As time went on we slowly decreased the amount of thickening he needed and eventually he stopped needing anything at all.  He did continue to have infections and suddenly his tonsils & adenoids were huge.  So off we go to remove them to make him better.

After his tonsils and adenoids were removed he suddenly started having stuff come out his nose again.  I was trying to feed him some ice cream a few days after his surgery and suddenly two lines of chocolate ice cream started pouring out of his nose.  Freaked out I called the ENT who reassured me and said that it can happen because the soft palette can get stiff after the surgery and to give it a couple of weeks.

Typical doctor—if HE had food coming out of his nose when he ate would he wait a couple of weeks?  I don’t think so.

So we waited.  And waited.  And while it has gotten much better he is still having some problems. 

Adding to the concern we started to recognize that he had lost his consonants since the surgery.  He suddenly wasn’t saying Dada or Baba or any hard consonant any more.  He has all of the vowels the softer front of the mouth consonants but that was it. 

So we called in the Speech Therapist.  She was immediately concerned and I could tell very confused.  She has recommended going back in for another swallow study.  Apparently there is also a nerve that can be hit during this type of surgery that can cause speech issues.  Great. 

We are headed to his neurology follow up tomorrow.  The hope was that he would be walking by this follow up appointment so we could remove the possibility of a few neurologic issues that we still haven’t been able to dismiss.  No such luck.  He is close.  At least everyone tells me that.  He seems like he is ready to go but as soon as he feels the lack of support he immediately crumbles.  Part of me thinks it is confidence.  He is just scared to let go.  (Sound familiar Mommies?)  The other part of me thinks it is a balance issue.

Because he isn’t walking he is officially “delayed” now at almost 19 months.  That delay with the additional small motor skill delays and speech issues all add up to another trip to Genetics and scheduling an MRI to check out his beautiful brain.  Something about grey matter and white matter and what’s the matter. 

My little medical weirdo is happier than ever.  He has also recently discovered how to fight back against his sister or anyone who wants him to do something he isn’t interested in doing.  Trust me, when he whacks you across the face there are  no low muscle tone issues there!  He loves to clean up and then make a mess right away.  And the boy can EAT!  He puts it away.  I swear that he should weigh 40 pounds by now by the way he eats.  And he loves to try new foods.  He really likes to be outside and this cooler weather has helped give him the opportunity to be out much more.  Add a bath and the kid is over the moon.

The saga continues but I am much more calm.  I think.  I sound like I am calmer, right?  Right. 

Tonsils and Adenoids are Outta Here!

Truman’s surgery to remove his tonsils and adenoids was today and everything went very well.  I was shocked by how quickly the whole process was.  We had a few hiccups to start but overall I was really happy with the care we received.

Because of Tru’s muscle weakness issues he has special anesthesia needs.  He cannot use the “gas” that makes you fall asleep before the actual anesthesia is put in the IV.  The gas can cause issues for certain muscle disorders and lead to some pretty scary complications.  So instead of getting to head into surgery, get the gas to go to sleep and then receive his IV he had to get the IV done before he went in.  IV’s on little ones are hard especially if you aren’t used to doing them.  The folks at Children’s Mercy are typically bing, bang, boom and done.  This time not so much.  They did give him some medication to relax him first and my high pain tolerance kiddo didn’t even cry through the entire pin cushion process.  That IV therapist should thank his lucky starts that he is so weirdly able to handle pain!  They also had to prep the room and remove any gas from the lines before he went in so we were running about an hour late after everything. 

We didn’t get to walk him back which was very hard.  I had to hand him over to the nurse which just killed me.  I felt like my whole world just left my arms.  It literally felt like my heart was ripped out of my chest.  He just looked at me and smiled and I sent him off.

The actually surgery only took about 30 minutes.  I was so amazed.  When I got my tonsils out in 4th grade it was major surgery.  I spent 2 nights in the hospital and I remember it being this crazy long procedure and recovery.  His ENT came out and told us it went very smooth.  He commented about the size—BIG.  He is positive that he is going to be able to breathe much better.  Our hope is that with better breathing he will sleep better, grow more and become stronger.

The experience of seeing him in the Recovery Room was horrific.  NOTHING like what we experienced for his muscle biopsy.  When we came back then he was a little fussy but comfortable.  Once he was in my arms he calmed down immediately and I gave him a bottle and he was a happy camper.  Today when I walked in the room a nurse was holding my thrashing baby who was screaming and had blood dripping down his face.  He was not really awake and he was scared and in pain.  The blood turned out to be normal secretions but he just had a lot more than normal.  He was having a really hard time breathing through them and he sounded like he was drowning.  On top of the screams he was unable to control his body and his head was flying all over the place.  I grabbed him out of the nurses arms and he calmed down a bit but he was still very confused and was really struggling to breathe.  They told me he was “much better” than when he first came out.  WTF?  THIS was better??  I cannot imagine what he was like now that he was “better.” 

They added some more pain meds and used a suction tube to help him.  I crawled onto the bed and held him on my chest just like we did every night when he was a baby.  He settled down and slept.  We had to add some oxygen to help him keep his O2 stats.  As long as he had the meds and we could keep him suctioned he was OK.  After about 45 minutes things got much better.  The doctor came in and gave us the all clear.  We removed the oxygen and checked his stats and then we were out the door.  I was simple amazed that I was taking my son home only a few hours after surgery. 

They sent us home with pain meds and Tru was OK at first.  He was sleepy and a bit whiney.  Then it was time to give him a dose of meds and it was horrible.  He screamed and grabbed at his mouth trying to get it out.  Most of it dripped down his chin and the rest was on daddy.  I had no idea how much actually went in but it wasn’t enough to keep the pain down.  He was super fussy and couldn’t get comfortable.  He wouldn’t drink.  Finally he slept and when he woke up it was time for another dose.  Same situation.  This time I think even less actually got in his body.  I called the  nurse and had them order the same meds he took after his muscle biopsy.  When he took that dose it went right in and everything was just great.  Within a few minutes he was smiling, drinking and even stood up and played on the floor for a while.  He then went into a perfect comfortable sleep.  Whew.  What a difference.

He is almost ready for another dose and hopefully this one will be the same.  The next few nights we will need to wake up everything 3-4 hours to give him his pain meds and get him to drink.  If his throat gets dry it makes the pain worse and can cause complications.  I pray that he spends the next few days sleeping and just letting himself heal.  Hopefully after a few weeks we will start to really see some improvement. 

I had a dream the other night that it was the day of Truman’s surgery and I handed him to the nurse.  A little while later the doctor came out and told us that it went well and he was doing amazing.  He couldn’t wait for us to see him.  When I got back into the room he stood up by himself, walked over to me and said “hi mommy!”  I hope that it is a sign that this surgery was the right decision and will help him accomplish all of these milestones.

Thank you to everyone who sent out prayers or good juju.  It was felt and it was powerful.  Keep us in your thoughts a few more days while he heals. 

It is done.  Thank God.

Truman Update

Things have been running along smoothly so of course something had to happen to throw us off course...

Truman has had breathing issues since birth.  Actually for the first few days of his life he made this noise the nurses called "singing" to help himself breathe.  It was cute at first.  It sounded a little bit like a sigh mixed with humming.  After several hours we were all pulling our hair out.  He needed some oxygen but the nurses said it was fairly normal for c-section/early babies and that he would eventually stop.  And he did--thank God!  How horrible that I spent even a little bit of time being annoyed by my newborn?

He also has an incredibly high palette.  He was examined by a couple of doctors to make sure that he didn't have a hidden cleft palette because it was so high.  Part of his low muscle tone caused him to have nasal reflux.  Basically he didn't have the tummy muscle strength to get his milk completely swallowed all the way down to the stomach so part of the fluid would come back up and into his nasal cavity.  Yes--my kiddo spit up thru his nose.  But most of the time it didn't actually come out it just hung around in his sinuses.  We had to add a thickener to his bottles to make the fluid heavier and therefore easier to get all the way down to his tummy.  It was called Simply Thick and it was like adding gel.  It worked pretty well and it cut the issues almost down to nothing.

But as the doctors told us if you shove enough food up your nose eventually you are going to get an infection.  Interesting way to put it but true.  So the poor little guy has fought sinus infections and allergy like symptoms his entire life. 

The reflux also caused him some pretty significant issues with being on his back.  Instead of being strong enough to spit up and get it out of his mouth he would spit up and it would sit in the back of his throat.  We would lay him down on his back to change a diaper and he would suddenly turn blue because he stopped breathing.  The scariest part was that it was silent.  He didn't gag or choke.  He would just stop breathing.  We quickly realized that he wasn't going to be able to be "Back to Sleep" for the SIDS factor.  So our doctors recommended that he sleep on his stomach on our stomachs.  Our breathing would help him from getting into the deep sleep that stomach sleeping can cause and SIDS issues arise.  So Chad and I would switch nights sitting up with him laying on our stomachs while he slept and we "slept."

He also snores like a man.  A large man who has been drinking.  His has woken himself up because he snored so loud.  I didn't think much about it until I realized that snoring is also a symptom of sleep apnea.  My dad had sleep apnea for years and had to wear a special breathing mask at night because he would actually STOP BREATHING.  I started listening closely to his breathing pattern and realized that he did have several apnea episodes and it scared the poo out of me. 

As he has grown his has become stronger and a lot of the reflux issues have gone away.  But he was still constantly congested.  He frequently has a running nose and it would sound horrible.  It was that deep congested sound that you get when you have a horrible cold.  We would suck and suck and suck trying to clean out his sinuses and it never felt like we were getting any where.  Eventually his ENT gave us an electric version of the sucker and we would use this long tube and this machine would suck the boogers out.  Wow.  That was a lot of snot.  It was weirdly satisfying to see it all come out.  Tru wasn't quite as thrilled with the process as we were.

After awhile the sucking didn't seem to be doing anything.  We no longer got that satisfied tube full of boogers and the sound just got worse and worse.  His regular doctor put him on baby Singular thinking it was allergies.  The medicine helped but off and on it would get bad again no matter what we were giving him.  I finally decided to take him back to the ENT to see what we needed to do.

His doctor took one look at his throat and his eyes got big.  Then he looked in his nose and his eyes got even bigger.  He sat down across from me, but his hand on mine and told me that Truman's tonsils are almost touching.  His adenoids are bigger than he has ever seen in a child his age. 

He wasn't congested...he was trying to breathe through a blocked throat and nose.

His doctor was very concerned of course and mommy started to freak out a bit.  He got me settled down and we discussed our options.  He said that he probably wasn't this enlarged all of the time but that an allergy flair was probably causes them to be bigger.  He also said that it was time for his tonsils and adenoids to come out...sooner rather than later.

Our ENT in in Lawrence.  He is the only doctor that we have gone to that is not at Children's Mercy.  So after I left his office I immediately called Children's to get in with an ENT there so we could get his surgery done at the hospital that has been taking care of him since birth.  I just feel safe there.

The phone call didn't go as planned.  The nurse I spoke to told me that it would be October or November before we could get in for an appointment and December or January before we could get in for surgery.  I explained what the doctor had said about his breathing and how he could stop any time.  I also told her about his developmental delays and that we didn't have a diagnosis yet.  I explained the muscle tone weakness and how careful everything has to be because of this issue.  She told me that every mom who calls has a kid who is "special" and it it is common for kids with developmental issues to have ENT problems.  I nicely told her that I didn't give a rats tushy about other people's kids, just my own and then as politely as I could I asked how we could get in sooner because I was afraid he would stop breathing.

Her response?

"Unless he is coding he isn't getting in here before October or November."

WTF? 

I was so shocked and so upset that I hung up the phone.  I drove sobbing to find my mom at her hair appointment and burst into the salon like a crazy person.  Once I was calmed down and my mom could understand the words coming out of my mouth we went to work trying to find out what else we could do.  Our neurology nurse was shocked by what had happened and she promised to get some movement.  She called a little while later and said that she had us placed on a waiting list for August.  Whew.

So we waited.  And waited.  And Truman got worse.  And worse.

And now we can't wait any more.  He is having horrible nights because he is constantly waking up when he stops breathing.  He is always grabbing his head and looking at me like, "Mom DO something!" 

So we are doing something.  Truman is getting his tonsils and adenoids out at LMH next Wednesday.  We are not going to wait for Children's to be available. 

I am terrified.  I know that LMH is a great hospital.  I know my ENT is amazing.  I also know that they don't deal with developmentally delayed, low muscle tone, 18 month old babies every day. 

Our ENT spoke directly to our Neurologist and got information on anesthesia.  He is going to do it at the hospital and not the surgery center. 

I am still terrified.  I don't know if I would be this scared if he was at Children's or not.  I know that I would be nervous.  I was nervous about his surgery that he did have at Children's.  But I also knew that he was surrounded by people who did this all the time and knew little bodies. 

Second surgery...18 months old. 

Truman Health Update

In the midst of all the craziness of summer we have been continue to work on Truman's muscle tone issues.  He has weekly physical therapy sessions and we also work with him daily.  He is doing incredibly well.  It is really amazing how much stronger he has become.  In the past few weeks he has really developed a sense of exploration.  He spends a lot of time trying to get into as much as possible!  He stood on his own for about 5 seconds the other day in PT which was very exciting!

The not so good news is that he has been continuing to suffer from a lot of congestion and breathing issues.  He has always had an extremely high palate which caused a lot of feeding issues when he was younger.  He also had nasal reflux which means that when he swallows he doesn't have enough strength sometimes to actually get it all the way down to his stomach so it comes up and into his nose.  Not as big of a deal when it was just formula--we were able to thicken it to help avoid some of it.  But it also caused and continues to cause a lot of congestion issues.  He also has really bad allergies that add to the issue. 

This summer has been particularly bad.  He started snoring (well snoring more) than before.  He was constantly sounding like he had a stuffed up nose.  He also developed a cough.  I finally decided it was time to head back to his Ear, Nose and Throat specialist to see if there was anything else we could do.  He took one look in his throat and one in his nose and informed me that while he does have some congestion caused by allergies...his actual problem is that his tonsils and adnoids are gigantic.  As in tonsils almost touching gigantic.  The sound that we always thought was him breathing through congestion is actually him  breathing through his tonsils and adnoids.

So Truman gets to get his tonsils and adnoids removed.  At 16 months old.  He is going to have surgery...again. 

Currently we are in a waiting mode because we are trying to get him into the ENT at Children's Mercy so he could have the surgery there.  His muscle tone issues make anethesia difficult.  But they can't get us in for an APPOINTMENT until October or November.  Then the surgery couldn't take place until December or January.  His ENT in Lawrence doesn't think we should wait that long.  He will continue to have breathing issues and we could run into a more emergency situation.  So I am trying everything I can to get him into Children's earlier but it isn't looking good.  So I am also trying to come to terms with him having surgery at LMH.  LMH is a great hospital...but it isn't a Children's hospital.  They don't deal with 16 month olds with special muscle issues every day.  How many 16 month olds do they actually have get their tonsils and adnoids out? 

I know I don't have much time to wait so I am working through every possible way I can to get into Children's and when I have exhausted all options I will call and schedule the surgery for here. 

The saga continues.  But man, I love that little boy so much.  How could you not?

Vote for Truman!

On a whim I entered a few photos of Truman into the Parent Magazine Cover Contest...and it looks like he was chosen as one of the photos that is in the running for the weekly winner.  The contest has judges but they also allow people to vote on photos.

So...VOTE!  Early and often!  I personally think he is the cutest kid in the contest but I may be a bit biased!

Click on the link below to go to the photo and then vote!

Thanks in advance.  I would love to show my little trooper to the world and get the word out about developmental delay at the same time.

http://photos.parents.com/category/vote/photo/326892

Enter by clicking the link above or by clicking here--Vote!

Truman vs. The Ravioli

I think it was a tie. 

Crawling!!!

Truman is crawling!!!  This is an incredible, amazing, holy crap, oh my Lord, thank you little baby Jesus moment for the Booth-Meyers family!

We never thought that this would actually happen.  He has always had such low muscle tone in his arms and upper body.  Crawling requires that he put a lot of weight on he arms (well not a LOT he is only 21 pounds!) and he has always just crumpled when he tried to be on all fours.

Last Saturday he popped up into the all fours position randomly at an auction when I put him down on a table.  That evening he made a few attempts to move in the all fours position but he was still struggling to stay up.  It was actually pretty amusing to watch...he looked a little bit like one of those robot dogs.  He would get a few jerky moves forward and then lay down to rest.

By Wednesday at tiny-k he was really starting to figure it out.  His physical therapist was so excited!  She had planned an entire session working on the all fours position to help him to go from his stomach to a sitting position.  He has always just tried to play with toys while he was still on his tummy making his neck and arms very tired.  Instead he popped up onto all fours and then leaned back and sat ALL BY HIMSELF!  Whoo-hoo!!

He has been working hard all week until this morning when...cue drum roll...he crawled all the way down the hallway!!  He then turned around and crawled back.  The grin on his face was priceless.  Now there is no stopping him.  We sit him down and he crawls away.  SO AMAZING!!

I guess it is time to put up the baby gates.  We bought them when he was about 6 months old because Scout started crawling at 5 months.  Now at 15 months we finally get to use them!  CAN YOU TELL I AM EXCITED???

He is still pulling up like crazy.  He now can actually crawl to something to pull up which makes him a very happy camper.  I feel like walking is right around the corner.  If he walks before 18 months he is technically not delayed.  We also started speech therapy.  Often when a child is working hard on muscle motor skills they will lag on speech.  He is loud (after all he is half Booth!) but he doesn't have many words yet.  He says "up!" and "out!" and "dada," and my dad swears he says "Boppo" (the grand kids name for my dad) but I'm not so sure!   He only says "mama" if he is crying...which is just wonderful to hear.

I'm sure in a few weeks I am going to be a little less excited about the crawling thing.  He has a bit of a daredevil spirit so I have a feeling he will be getting into a lot.  He is all boy.

For now I am just going to revel in this major accomplishment.  I'm so incredibly proud of his determination!

I scream, you scream...

We all scream for ice cream! 


Truman and Daddy made homemade butter pecan ice cream today for my dad and cousin's birthday party. 

He had so much fun helping Daddy.  Then I told him there was ice cream in there...

He was a little excited...can you tell he likes ice cream?

Pool Time

We got a little pool for Truman since he absolutely loves the water.  He had a blast playing with his sister who decided that the pool was the perfect size for 2!

Look at that devilish grin!  He was so excited!

Phog the dog watched over them...I think he was hoping for a drink!  Do I have the cutest kids or what?

Cool Things Truman is Doing

My little guy is just shocking all of us with the exciting things that he is doing now.  For some reason he has spent the last few weeks just going crazy with the developmental milestones.

He is pulling up and then sitting back down!  HUGE!  (Sorry about the weird angle...I held the camera wrong!) 



He is having a blast playing Peak-a-Boo!  Great small motor skill!



And this is the best applause I have ever heard in my life!



He is also "cruising" the furniture...which I haven't captured on film yet.  Every time it has happened I have been is such awe that I forget to grab the camera!

We also saw his neurologist last week and had an incredible visit.  He was so proud of Truman.  I think he was incredibly shocked by what Tru was doing!  In fact he told us that he didn't think that Truman was ever going to walk.  He said that he had seen lost of children with similar unexplained low muscle tone and the majority of children do not ever have the ability to do the things Truman is doing now...it was pretty difficult to hear but exciting at the same time.  I think I knew in the back of my head that there was a strong potential that Truman would never walk or that he could end up in a wheelchair.  I just had refused to think about it and instead focused on the physical therapy.  Seeing the look on the doctor's face made me realize just how close we were...

We still do not have a diagnosis.  As his doctor put it, "sometimes doctors are not smart enough to figure it out...but the child starts to catch up and so we follow the child."  The current plan is to go back at 18 months for another follow up appointment and potentially do an MRI of his brain to make sure it is developing correctly.  If he continues developing new skills (even delayed) he doesn't want to push with a bunch of tests that he doesn't think will give us a real answer anyway.  He doesn't want Truman to have to go through all of it...and I agree.  One of God's lessons in this entire process was the opportunity to learn patience and to be OK not always having the answers.  For those of you who know me...that was not an easy adjustment, but Truman made is possible.

Life is good.  I'll post cruising video soon.  I can't wait for this summer!

This is the other way Truman "cruises"...he loves this car!

Mother's Day

Being a mom is the best thing that has ever happened to me.  My children are amazing and make me a better person.  I am so lucky that I was chosen to be their mommy and every day I thank God that they are mine. 

Today my daughter and son (with some help from Daddy!) spoiled me rotten.  I got to sleep in and then had breakfast in bed.  After a lazy morning I got to take a NAP!  Scout got me a new toaster and Truman got me new scissors for my kitchen and fudge!  Chad of course got me the puppy!  (I wish she was old enough to be with us!)  Chad and Scout made a delicious cake and then we went to my mom's house to celebrate with the other moms in the family.  My mom, sister and sister-in-law kept up the spoiling theme and the guys did a great job making a yummy dinner.

Before I had kids I was always so amazed by my sister and sister-in-law.  I could not understand how they did it.  I loved their kids like crazy and was happy to just be the aunt.  They have raised incredible kids and I am so lucky to have them as role models.

My sister-in-law Kim taught me a love of cooking.  She also has given so much of herself to me and my family.  She is an amazingly strong woman and her determination is inspiring. 

My sister has her hands full.  As a single mom I am always amazed by everything that she does.  She has shown me that anything is possible.  She is not afraid to fail and puts herself out there in so many ways.  She doesn't care what other people think about her...which is something that I am struggling to learn.  I can't say enough about my sister...she really is just an incredible woman.

My mom.  Wow.  I don't even know where to start.  My mom is my bestfriend.  She is the person I can turn to with any problem big or small.  She is my rock.  She always knows what to say and to this day is able to "heal the boo-boos" even though when the boo-boos are more then a simple scrapped knee these days.  She takes amazing care of my children and they love her so much.  Her advice it thoughtful and although she will some times stick her nose in things she always does it out of love.  She taught me how to be strong.  She taught me how to stick up for myself.  She always gave me the freedom to figure things out in my own way.  I always say that I didn't move away from Lawrence because my mom wouldn't let me...but the truth is I just didn't want to be away from her.  She is a beautiful person, inside and out.  Thank you Mom...you can never really know how much I appreciate you and all that you have done.

I always tell people that my "mama bear" came out the first time Scout was placed in my arms.  But I think it starts before that.  When you know that you child is growing inside you and it is your job to protect them your whole world changes.  Scout made me a mom and has dealt with my learning curve!  She is a genuinely caring person.  Her heart is gigantic and she always is thinking about others.  She has an incredible sense of humor and can make me laugh all day.  She is stubborn and dramatic and silly.  She is smart, so smart but has no clue.  She lights up a room and steals the show.  I love her so much and I am so happy that I have a little girl who is a little bit too much like me!

Truman is an angel.  His smile is contagious.  He has an laugh that make everyone laugh with him.  He is determined and tough as nails.  He has these incredible eyes that really "see" things.  He looks into you as much as at you.  He is all boy but has a sensitivity that is hard to describe.  He hasn't had the easiest life so far.  But you would never know it.  He just keeps going and smiling.  I was so thrilled to find out I was having another baby.  After everything I went through with Scout I really didn't think it was ever going to happen.  I spent a lot of extra time with him during the pregnancy...being on best rest that long does that!  We talked a lot and I sang to him and rubbed my tummy.  We were so in sync by the time he was born that he was like an extension of me.  He is a mama's boy for sure.  No matter what the future holds, Truman is going to face it with grace.  He has taught me so much in the short amount of time he has been with me.  I think sometimes that is why God sent him to me...to remind me to slow down, appreciate the little things, celebrate life every day, and learn patience in the difficult moments.  Tru is a champion in my eyes.

And now the day is almost over...I am tired (even with all the extra sleep!) but full of happiness.  Happy Mother's Day to all the moms out there.  You are amazing people.  Your children are blessed to have you.  Thank you, thank you!

Day at Henry's Plant Farm

We have an annual tradition of heading to Henry's Plant Farm each spring.  If you have never been to Henry's you MUST go.  It is a wonderful place with incredible flowers and the people are so nice and helpful.  We always have a wonderful time.  Last year Tru was too little to really appreciate it last year but he had a ball this time around.

He was super excited that they had wagons.

He wasn't as sure about the corn bath...he thought it was a little weird and we found corn in some interesting places later!

Scout on the other hand dove right in.  Again, corn tends to travel home with us.

Scout took a trip on a saw horse...

While Truman spent some quality time with a barn cat.

Scout posed "happily" by a goat.  They also have donkeys, pigs, llamas, peacocks, cattle and an adorable, yet weird looking, dog.  Truman prefered the cat.

Mommo and Boppo also went on the trip.  Look--Boppo is actually looking at the FLOWERS.  Oh yeah, that is what we came for!

Aunt Mimi also joined the group and she had an actual "plan" for the garden...plan?  What is this you speak of?

It was a perfect day and now we have to plant all those dang plants we bought.  I like the shopping part.

Going for a drive

This child loves, loves cars.  When he actually sat behind the wheel he was in heaven!