Moved, New Job, and 2nd Treatment at ACH

I’m not sure where to begin with this post.  And it might be a little disoriented (like my current mental state), but I’ll give it my best shot!  So back in July when we first had our consultation with Dr. Richter at Arkansas Children’s Hospital, we learned that Atticus would need treatment there every 2 to 3 months for the next approximately 2 years, and then treatments more spread apart after that.  This will consist of lots of sclerotherapy (bleomycin injections), laser treatments, another surgical tongue reduction, and multiple surgical reductions to his lower lip.  We were so excited (and still are) to learn of all of these treatment options for Atticus, but on our 12 hour drive back to Charlotte, it hit us – how would we pay for all of this?  How would we get the time off of work?  How can we both work full-time and travel to AR every few months?

During another 7 hour drive from Charlotte, NC to Washington, DC (this time for vacation), we started to re-evaluate our lives.  Long story short – we now live in Raleigh, NC – the Research Triangle of North Carolina.  We felt that job prospects and pay would be better there, and Raleigh is consistently ranked as a best place to raise a family.  This move also puts us around 2 hours closer to our family in PA.

I started a new job at North Carolina State University in their Office of Institutional Research and Planning and Brian is finishing up his semester at Wingate University, so he is back and forth between Charlotte and Raleigh, while me and Atticus are in Raleigh full-time.  Anyone who has ever moved knows all of the stress that comes along with that, so I won’t get into those details!

Me, Brian, and Atticus flew out to Arkansas on Thursday, November 13th and checked into Ronald McDonald House in Little Rock.  Atticus’s treatment was at 10 am the next morning.  When Dr. Richter first saw Atticus the morning of surgery, he was very pleased with the effect that the previous bleomycin treatment had on Atticus’s tongue.  Sometimes it is hard for me and Brian to tell since we see him everyday, so it is always nice to get someone else’s opinion on the tongue, especially when it’s the opinion of one of the best LM doctors in the world.

Another thing we learned on this past trip is that Dr. Richter is planning to take Atticus’s trach out on our next visit which will be sometime in January or February!  This is so exciting for so many reasons – traveling will be so much easier, Atticus will be able to be with other family members without us being present, he will be able to swim, no more medical supplies, the list goes on and on…

This was the first time that Atticus had a surgery that was done outpatient.  It was really nice not having to sleep in a hospital.  Hospital stay or not, though, the whole thing does take a toll – both on us and on Atticus.  He is getting older now, and more aware.  He still does not seem afraid of hospitals, doctors, or nurses.  He does get a little medicine to help him go back with the nurse to the operating room.  The injection/laser treatments take only about a half hour, and then Brian and I get called back to recovery.  I honestly can’t even remember, but I think Atticus was back in recovery for maybe 45 minutes and then an actual room for maybe an hour, and then we were free to go.

Seeing him in pain never gets easier and seems to be getting harder.  His tongue and lip swell up a lot after the treatments, and I am sure it is very painful.  You can see the pain in his eyes and his facial expressions and it breaks my heart.  He doesn’t eat well for days and is typically prescribed an antibiotic, a steroid (to help with swelling), and pain medication.  Administering the medications gets increasingly difficult as he gets older, stronger, and more aware of the fact that it is medicine, and medicine is no fun.

I know that I can’t go down the road of why  – why was Atticus born with this lymphatic malformation for which there is no cure, and why is there not an easier course of treatment?  As a parent, it is frustrating having to see your child go through so much for something that seems like it shouldn’t be a big deal – like being born with a big tongue.  I wish there was some magic pill that he could take to reduce the size of his tongue, that would spare him all the seemingly endless surgeries.  But I know that is just not an option – and we have to work with, and be grateful, for the options that we do have.  I try to be strong all the time – for Atticus, for myself, for Brian – but sometimes it’s OK to just let myself feel instead of always having to be strong.  Its OK for me to get upset and cry, as long as I pick myself back up and keep moving forward.

 

1st Treatment at Arkansas Children’s Hospital

Atticus had his first treatment with Dr. Richter at Arkansas Children’s Hospital last Tuesday, September 2nd.  He received his first round of bleomycin injections into his tongue, laser treatment on his lower lip and tongue, three bottom teeth extracted, tonsillectomy and adenoidectomy.  Click here for some very good information regarding bleomycin injections for lymphatic malformations.

Pre-Surgery; 9/2/14

We flew out the day before, stayed in a hotel Monday night and then headed to the hospital on Tuesday morning.  Surgery took about an hour.  Atticus was very disoriented afterwards and needed morphine.  Tuesday night he was pretty out of it.  He ended up staying in the hospital until Saturday morning because his pain was very bad and he wasn’t eating or drinking much.  We had to force him to drink via syringe and by Friday we were getting enough fluid into him where they felt comfortable discharging him early the following morning, which was nice for us because our flight back to Charlotte was Saturday morning.

His tongue got very swollen after surgery and probably peaked around 48 hours post surgery.  Each day it is slowly going down.  Atticus was prescribed a steroid to help with the swelling.  We are thinking the swelling will probably last 2 to 3 weeks and then we will excitedly wait to see what the results of the bleomycin might be.  We recognize that it may take several treatments.

It seems as though most of the intense pain that Atticus was feeling was probably from the tonsillectomy – so luckily he will never have to feel that again!  The pain stayed pretty intense for about 5 days and now is slowly easing up.  He ate really well yesterday – oatmeal, waffles, applesauce!

The next step will be more laser and bleomycin injections probably sometime in December.

And, I cannot end this blog post without expressing how impressed I am with Dr. Richter and the staff at Arkansas Children’s Hospital.  I feel so confident and at ease knowing that Atticus is in such good hands.  At no point did we feel like just a number, even though I’m sure Dr. Richter is insanely busy.  He checked in on Atticus so much while we were there and is so compassionate and easy to talk to.  You can tell he really cares and is very passionate about what he does.

View from Surgical Waiting at Arkansas Children’s Hospital

New Chapter

Wow!  What a crazy past week it has been for us.  In an effort to make sure that we are doing everything possible for Atticus, I made an appointment for him to see Dr. Gresham Richter at Arkansas Children’s Hospital’s Vascular Anomalies Center for Excellence.  We have been very happy with Atticus’s current doctors at Wake Forest and we feel that he has made amazing progress under their care, but because Lymphatic/Venous Malformation is so complex and rare I always felt that at some point Atticus would need to be seen by a doctor who specializes in LM.

We have been hearing about Dr. Richter ever since Atticus was born in St. Louis.  We were so excited to finally meet him and for him to meet Atticus.  He had heard of Atticus before, but we were excited for him to actually see Atticus.

We drove 1,520 miles round-trip, stopping over in Nashville on our way out and our way back home.  Every single mile was worth it.  We spent about three hours at the Vascular Anomalies Center on Monday, July 14th, meeting with Dr. Richter, his resident, and nurses.  Right away, Dr. Richter said that Atticus needs more than just interstitial laser.  He started telling us about multiple treatment options, which made me so relieved because I didn’t realize that there were still so many options.

For the first time since Atticus was born, a doctor spoke to us confidently about the treatment of LM and gave us hope that the procedures would work.  It is so nice to finally have answers and a positive outlook regarding the treatments.

The treatments that Atticus will have will occur mostly over the next two years.  For the next two years, the treatments will be aggressive and we will need to travel to Little Rock probably every two or three months.  After two years, treatments will become more spaced out.

Atticus’s first surgery in Little Rock is scheduled for September 2, 2014.  He will have his tonsils and adenoids removed, as these are making the malformation worse.  Dr. Richter will also extract Atticus’s front bottom teeth, as they have become damage by the pressure of the tongue, and are making the malformation worse.  Atticus will also have laser treatment on his lip, and will also receive two different types of injections into his tongue.

The first type of injection is called doxycycline, which is an antibiotic.  Atticus’s LM is microcystic (versus macrocystic), so a very small needle is used to inject the medicine into the microcysts.  The second type of injection is called bleomycin, which has been used to treat many conditions.  At very high doses, it can lead to lung damage, but the dosage that Atticus will get is very small.  The point of doing two different types of injections is to see which one shrinks the tongue more.  Doxycycline seems to be the safer drug, so if the results are similar, I think that would be the choice for future injections.

Future treatments will include additional laser treatments, more injections, another lip reduction, and another tongue reduction where he will take out tissue from the middle of the tongue.

Dr. Richter also feels confident that Atticus’s trach can come out a lot sooner than we were thinking.  This is really exciting to us after being a trach family for almost two years now.

So this is the beginning of Atticus’s new journey.  We are very excited to get things started.  We know the next two years are not going to be easy, but in the end, it will all be worth it.

 

 

Lip Reduction Surgery – June 18, 2014

Atticus had his first lip reduction surgery on June 18, 2014.  His plastic surgeon removed tissue from the inside of his bottom lip, tightened up some stretched out muscles, and stitched up the incision with three layers of stitches.  Over time, the scar tissue may help to curl the lip upward.  The focus of this lip reduction was on the inside of the lip.  Atticus will need other procedures done to the outside of the bottom lip and possibly more surgeries for the inside of his lip.

Atticus spent one night in the hospital.  He ate and drank with no problems after surgery.  It is really amazing how well he is able to eat post-surgery.  Nothing gets between Atticus and his food!  Because he ate and drank so well, and was responding to the pain medication, we were able to go back to Charlotte the next day.

Of course, as with any surgery, the bottom lip is currently swollen.  It usually takes a few weeks for all of the swelling to go away.  Once all of the swelling is gone, we will be able to see the true results of the surgery.  It may take a month or so for all of the stitches to fall out too.

Atticus had quite a bit of pain in the days following surgery, but now he is almost off pain medicine.  He is pretty much back to his normal self.  Every once in a while he points to his lip and says, “It hurts.”  But that is usually when we are cleaning it or applying Normlgel to it.

So far the healing process is going very smoothly.  Atticus is not bothering the stitches.  The only things we really need to do are clean the lip with sterile medical sponges after meals, apply Bacitracin twice daily for about one week, and apply Normlgel as needed to keep the lip moist.

We are eager to see the true results in about a month!

 

Happy 2nd Birthday, Atticus!

Atticus,

Two years ago on this day, me and your dad were in St. Louis waiting to see whether your lungs were fully developed to determine whether to go ahead with the EXIT procedure.  An amniocentesis was performed and about an hour later we learned that May 7th would be your birthday.  That day was crazy and things moved quickly after that.  I don’t remember what time I woke up from surgery, but I do remember that you were born at 1:29 pm Central Time and that the first time I saw you was in a photograph placed near my pillow.  Mommy was under general anesthesia for your birth, and so were you.

May 7th will always be an incredibly special day for us, not only because it is your birthday, but because it is the day that you were SAFELY brought into this world.  I will forever be grateful to the 28 doctors that took part in your delivery.  I wish I had the full list of names, as I only can remember a few.

The care that we all received at Barnes-Jewish Hospital, St. Louis Children’s Hospital, and the Ronald McDonald House is care that I will never forget and that I will always be grateful for.  Even though the days after your birth were so confusing and scary, I will always look back on your time in the NICU with fond memories.

I love you, Atticus, and I am so thankful for everything you’ve taught me in the last two years.  I truly don’t know where I would be without you.  You fill my world with meaning and purpose.  You are an inspiration and your smile lights up the world.

Happy Birthday!

Valentine’s Day 2014

It is Valentine’s Day, which I really don’t think is a big deal since it’s important to show others that you love them everyday, but it’s still fun to have a holiday or a reason to go out to eat.  I think back to last Valentine’s Day – our first with Atticus – and how we spent it at Levine Children’s Hospital in Charlotte.  It was the first time Atticus was sick and he had bronchiolitis which swells the bronchioles that lead to the lungs and can be really serious in kids under age two.  Since he has a trach and was only 9 months at the time, his pediatrician admitted him to the hospital especially since his 02 saturations were low.

I remember thinking, OK this probably isn’t that serious, but when they told me we had to go to the hospital via ambulance, I realized that it was more serious than I had thought.  I thought we would just drive him over to the hospital.  That was my first time in an ambulance – another first that Atticus would experience way before his mom.  He was 9 months and I was 30.

My parents were visiting us from Pennsylvania for the week.  They arrived on a Saturday morning and we went out to Concord Mills and to Cabo Fish Taco on Saturday evening.  By the following Tuesday, Atticus was in the hospital and on oxygen.  Those days that he was in the hospital, we joked with my parents how he was just fine on Saturday when the picture below was taken and we jokingly referred to that picture as “simpler times”.

At Cabo Fish Taco 2/9/13

At Levine Children’s Hospital 2/14/13

The hospital stay cut into my parents trip a bit, but what are you going to do?  At least they were there to help and support us, and got to see another North Carolina hospital :).  Atticus spent his first Halloween in a hospital, his first Valentine’s Day in a hospital, and almost his first Thanksgiving.  It was a hectic first year, but we made it through.  Things are looking a lot better this Valentine’s Day.  I don’t think we are going to fight the crowd to go out to eat but we may do a family night at Whole Foods, which has become a new favorite weekend outing for us.

If you’re wondering how grocery shopping can be a fun family outing, then you must not have ever been to a Whole Foods before.  That is all for now.  Have a great Valentine’s Day and don’t eat too much candy!

Interstitial Laser Treatment – Round One 1/29/14

Atticus had his first round of interstitial laser treatment on his tongue on January 29, 2014.  We arrived in Winston-Salem the night before and got settled in at the Ronald McDonald House across the street from Wake Forest Baptist Medical Center.  Our drive from Charlotte to Winston-Salem was not typical for North Carolina – we actually had snow and now I understand why everyone in NC freaks out at even the mention of snow – because they don’t really treat the roads.  They just don’t have the capacity to treat all the roads because snow is such a rare occurrence.  The highways were pretty bad, but we were careful, and made it safe and sound.

The following day we arrived at the hospital at 10 am.  The surgery was supposed to take place at 11 am, but they didn’t end up taking Atticus back to surgery until around 1 pm.  Atticus was a trooper though.  He hadn’t had anything to eat or drink for well over 12 hours, but we kept him busy enough in the waiting room and I don’t think he even noticed the hunger or thirst.  Because Atticus is an only child, and doesn’t go to day care, we don’t get to see him interact with other kids a lot.  There was a little girl (maybe 3 or 4) in the waiting room playing with these cool little hamster things that go when you press a button on their back.  Conveniently, she had two and when Atticus expressed interest, she let him play with one.  At one point, she looked at Atticus’ mouth confusedly and asked, “what happened to that baby’s mouth?”.  I answered, “he was born that way.”  She said, “Oh”, and went on playing. Every time Atticus would walk away, the little girl would say, “come back, baby.”  It was really cute.

After a couple hours in the waiting room, Atticus was finally called and things moved quickly after that.  Usually we wait for a while in the surgical holding area, but this time it was like bing, bang, boom and he was whisked away.  This time, they gave him a little something to make him relaxed before taking him back so that he wouldn’t have separation anxiety.

As he gets older and we get more used to these treatments, it’s not so much the worry about him having surgery – it’s seeing him sad, scared, or in pain that really gets to me.  I was glad to be spared having to see him scared and screaming for me and Brian as they took him back to surgery.

This procedure seemed to take a bit longer than previous laser treatments, mostly because of the addition of the interstitial lasering of his tongue.  After an hour or so, Atticus’ ENT came out to the waiting room and told us that the interstitial treatment had gone well – nothing unexpected.  He explained it to us as inserting a large and very wide catheter deep into Atticus’ tongue and then feeding the fiber through the catheter.  Then as he pulls the fiber out, he pulses it every 5mm or so.  So, even though there are only two incisions into the tongue where the catheter was placed, there are multiple spots inside the tongue that were lasered.  As the doctor described the procedure, I said how fascinating the whole thing is from a medical standpoint.  The doctor answered “Yes, it is fascinating…when it’s not your kid.”  He is right about that.  As I learn more about LM, it is fascinating what doctors can do and how far the treatment has come, but no one would wish any of this on their own kid.  And, I am always reminded of how far we still have to go and how some kids and adults are still really struggling, despite advances in treatment.

Pain and swelling so far have been the biggest obstacles.  Atticus was able to eat a few hours after surgery, so they felt comfortable sending him home the next day.  We were told that swelling would peak at 72 hours and then decrease from there.  We are currently almost at 48 hours out and the poor little guy’s tongue and lip are very swollen.  It is amazing that he can eat and drink through all the swelling and the pain.

Everyone is curious to see what the results of this treatment are going to be.  Right now, it’s a waiting game.  It could take a month or so before we really see what effect this treatment might have on the size of his tongue.  Luckily, I learned early on, even while pregnant to be OK with not having immediate answers.  I’ve grown patient and hopeful.  I take things one step at a time and am grateful for the positive things that are happening today, right now.  Like, the fact that Atticus is eating and drinking and that his pain can be controlled through medicine.  I’m grateful that there are treatment options out there for him.  I’m grateful that he is healthy and strong and able to withstand all of the surgeries that he is going to have to have in his life.  But, as I’ve said before, this is part of his journey in life.  A journey that may come with its obstacles, but one that will teach him the strength, pride, and resilience that will take him far in life.

Interstitial Laser Treatment

Atticus had an appointment with ENT today to discuss his upcoming interstitial laser treatment.  We had a lot of questions going into the appointment, and some were answered, but because of the nature of lymphatic malformations, no doctor can ever answer every question.  There will always be unknowns, and that is just something that me and Brian have learned to accept and be OK with.

I had done some research on interstitial lasering of venous malformations, so I went into the appointment knowing a little bit.  First, I have to explain that I’ve been calling Atticus’ malformation a lymphatic malformation, which is sort of the general term, but his actually has a large venous component and probably only a small lymphatic component.  I guess technically, it is a mixed venous lymphatic malformation.  There’s a whole classification system that was developed by Mulliken and Glowacki in 1982, if you’re interested.

Table 1.: ISSVA Classification of Vascular Anomalies

Vascular Tumors	Vascular Malformations
	Simple	Complex	Flow
Hemangioma Pyogenic granuloma Hemangiopericytoma	Capillary (CM) Venous (VM) Lymphatic (LM)	Lymphatico-Venous (LVM) Capillary-Lymphatico-Venous …	S L O W
Hemangioendothelioma Tufted angioma	Arterial Arteriovenous (AVM)	Capillary-Arterio-Venous …	F A S T

I’ll try to simplify the classification.  Vascular anomalies are a heterogeneous group of congenital blood vessel disorders.  These can be broken down into vascular tumors (the most common vascular tumor being hemangioma) and vascular malformations.  Vascular malformations can be lymphatic, capillary, venous, arteriovenous, or some combination of these.

Because Atticus’ malformation is venous lymphatic and goes deep into the tissue of his tongue, he is a candidate for interstitial laser surgery, which penetrates deeper into the tissue than a surface laser does.  Atticus is scheduled for his first treatment of this type on January 29th.  They will use an Nd: YAG laser and will enter the tongue with a catheter, which the laser will pass through.  They will probably laser two spots on each side of the tongue for a total of four spots.  Atticus’ team of doctors has not performed this specific type of laser treatment before, so they will be conservative on the first treatment and be more aggressive in future treatments, after they see how he responds.

No doctor has done a ton of these treatments because it is just not very common.  However, Dr. Gresham Richter in Arkansas has probably done more than any other doctor.  We are lucky that Atticus’ doctors have a direct connection to Dr. Richter and are consulting with him on the specifics of the procedure.  Atticus’ team of doctors feels comfortable and confident in their abilities to perform the procedure.

We asked about risks of the treatment.  The major ones seem to be internal bleeding in the tongue after the procedure, or the possibility of hitting a nerve in the tongue.  There are really no new risks to this procedure over any other procedure Atticus has already had.  We are expecting swelling, which will affect eating, so we will see how to deal with that after the procedure.  Because Atticus has a trach, swelling affecting the airway will not be an issue.

The most we can hope for is some shrinkage to the tongue.  We are not sure how much shrinkage to expect.  They are going to be conservative in their first treatment, so really, only time will tell.  We have to be patient and positive – two qualities that we quickly learned to embrace after Atticus was born.  There are no quick fixes or easy answers when dealing with vascular malformations.  At this point we are all too familiar with the answer of “I don’t know” from doctors.  While this can be unsettling, we appreciate the honesty of Atticus’ doctors.  For now, we just take it one day at a time, stay positive, and hope that this treatment will make a difference.

One Year Since Tongue Reduction

Today is special for a lot of reasons.  Not only is it Atticus’ year and a half birthday, but it is also the year anniversary of his major tongue reduction surgery.  I’ve really been thinking about how far he has come this past year.  Back on November 7, 2012, we didn’t know what to expect after the surgery.  The doctors performing the surgery had only done one other tongue reduction, so we had very little information about recovery, how much blood he would lose, how long he would take to heal, and what things would be like afterwards.  Would this affect his ability to eat, speak, or taste food?  There were so many unknowns.  Atticus stayed sedated for a full four days after surgery and was even on paralytics so that he could not move.  I try to imagine that happening now.  At the time, I was OK with it because I’d rather he not be in any pain.  Now that he is so active, expressive, and talkative, I can’t even imagine seeing him lay there for four days straight without moving.  Me and Brian really had to be strong during that time, for ourselves, but also for Atticus.  Babies pick up on the emotions of their parents, so no matter how much I had to worry about or how upset I could have let myself become, I stayed strong and happy and positive for Atticus.  I learned to fight for the needs of my child.  I realized more than ever that me and Brian know Atticus better than anyone and, despite not being medical professionals, we know best what he needs.

I am so grateful that I had my parents with us on the day of surgery.  The surgeons didn’t end up taking Atticus back to the OR until around 4pm and surgery went until 6:30pm.  My parents helped to pass the time and keep our minds on other things.  Soon after my parents left, Brian’s mom came and she was a huge help as Atticus started to wake up and begin healing.  I am so thankful that despite living over 600 miles away, our parents stepped up to the plate and helped us through a very trying time.

And now here we are – 12 months later, and Atticus is doing wonderfully.  Some days, I think that his tongue looks so good that you can hardly even tell that it is big.  You know that his tongue has gotten a lot smaller when little kids will only notice that he has a big bottom lip.  His tongue used to be so large, that you couldn’t even see his bottom lip.  But, that is all cosmetic.  The really important things – like his eating, speaking, and breathing – are another source of joy and thankfulness that we experience every day.  Although he still has his trach, his O2 saturations are always perfect (unless he is sick).  He does not let his tongue get in the way of his eating!  I hardly even have to buy the pureed baby food anymore.  He has primarily moved on to table foods – I just have to mash them or stick them in the food processor to chop them up.  His favorite food is still sweet potatoes.

His language development is amazing.  He says ‘baby’,’car’,’da da’, ‘Ollie’, ’airplane’,’apple’,’what’s this?’, among others.  He loves to point to things and have you say what it is.  Every time he hears an airplane overhead (even in the house – his hearing is amazing!), he points up and says ‘airplane’.  When we are out, he points to babies and kids, even 10 year olds, and says ‘baby’.  I laugh and tell him, “No, you’re the baby!”

Atticus is also exceptionally detail-oriented.  He points to a car and I say ‘car’.  Then, he points to every part of the car, even the headlights and taillights and he wants me to tell him what they are.  He is used to his nurses taking his pulse, so when the nurse puts the stethoscope up to his heard, he flips his little wrist over as if he’s looking at a watch to take his pulse.  He doesn’t miss a trick – and he loves mimicking what he sees.

He has a smile that lights up the world.  I keep myself surrounded by pictures of his smiling face at work to remind myself that as long as I have him and his smiling face, that I have nothing to be unhappy about.

I love you, Atticus, and I am so proud of your strength.

Laser Treatment

Atticus had his second laser treatment on September 4, 2013.  His first was on May 1, 2013.  In May, his plastic surgeon and ENT lasered both his tongue and lower lip.  The tongue and lip both swelled pretty bad (because of his tracheostomy, his airway was not a problem).  This time, they only lasered his lower lip, to give his tongue a little break.  His lip swelled pretty badly at first, but has gone back down.  Each time they laser, his lip should get a little bit smaller.  They will just keep chipping away at his lip and tongue.

When Atticus first got his tracheostomy back on October 31, 2012, we thought that he would only have it for about 6 months.  The thought was that by that time, the swelling from his major tongue surgery would be gone.  However, after his first laser treatment, Atticus’ ENT sat down with me and Brian down and explained an updated timeline.  He said that it would make more sense to leave Atticus’ trach in until all of these laser treatments are over, which would probably be another 3 or 4 years.  The new goal is to get Atticus’ tongue to a more management size by the time he starts school.  To do that, he will require laser treatments on his tongue and lip every 4 months for probably the next 4 years or so.

During that same meeting, the ENT also described the results of putting a scope down Atticus’ throat to check and make sure that the lymphatic malformation was still limited to the front of tongue and lower lip.  I was so happy to hear that the results of the scope showed no growth in the malformation, that I wasn’t even too upset about the updated timeline for the tracheostomy.

Sure, it may seem upsetting that my child will now have a trach possibly until he starts school. But, there are so many worse things that we could be dealing with.  I cannot change the situation, but I am in control of how I react to the situation.  I am not upset.  Instead, I am grateful that tracheostomies exist, as they have given so many people the opportunity to live and breathe, even with airway obstructions or other medical problems.

So for now, we keep going on our journey of laser treatments and trach changes, suctioning, and organizing medical supplies.  All of these experiences have already made me a better person.  Every day I am thankful for my health, the health of my child, husband, and family.  A day does not have to be extraordinary for me to be happy and grateful.  The minute I wake up, I am grateful that I am healthy and that I get to experience another day of everything the world has to offer.