ANNOUNCEMENT: Blog has moved to a new website

Hello Readers!

This blog has moved to a new website at www.gratefulmother.com.  This will be the last post on this website.  All content has been moved over to http://www.gratefulmother.com and that is where all future posts will appear.  I have also migrated email subscribers over to the new site, so if you received email notifications announcing new blog posts from this site, you should continue to receive email notifications announcing blog posts on the new site.

Change and Gratitude – a Look Back on 2014

As I was walking to work a couple days ago, I began looking back on 2014.  As this year comes to an end I felt it was only right to reflect back on everything that has happened.  Our life is practically unrecognizable at the end of 2014 as compared to the end of 2013.  The end of 2014 finds us living in a different city, me at a different job, Brian ending a job and looking for new adventures and opportunities, and Atticus another year older with a whole new set of skills and favorites.

In many of the same ways that 2012 was a major year of changes for us, 2014 is not too far behind in terms of transformation.  When 2012 began, we were childless (well, I was pregnant), living in Champaign, IL, and both working at University of Illinois.  By the end of 2012, we had a child, were living in Charlotte, NC and had both started new jobs.

2014 has certainly been a year of transformation and change, a year of new roads and journeys, and a year of each of us taking steps towards our desired future.  Here are some of our major changes from 2014  that I am especially grateful for:

1. Atticus’s medical treatment with Dr. Richter at the Vascular Anomalies Center for Excellence – ever since we drove to Little Rock this past July, Dr. Richter has been Atticus’s primary specialist treating his lymphatic malformation.  We have been so happy with Dr. Richter and the staff at Arkansas Children’s Hospital, and although Atticus has only had two treatments there so far, we do see a difference in the size of the malformation.  Dr. Richter’s plan for decannulation (trach removal) is much more speedy than we were previously told, and we are grateful for that (look for that as a major change for us in 2015!).

2. Calling Raleigh my home – talk about setting an intention and following it through!  We first discussed moving to Raleigh in late July and were moved here by early October!  With accolades such as the following, who wouldn’t want to call this place home!?

  • America’s Best Places to Live: #1 (Businessweek.com)

    IMG_1696

    Downtown Raleigh – “City of Oaks”

  • Best Place for Business and Careers: #3 (Forbes.com)
  • Top 10 Best Cities for Educated Workers: #5 (Raleigh-Cary, NC)(247WallSt.com)
  • Most Cost-Attractive Business Location: #5 (KPMG)
  • Best Cities in America for Health and Happiness: #3 (EcoSalon)
  • Fastest Growing Cities for Technology Jobs: #1 (Dice)
  • Best Cities for Raising a Family: #5 (Forbes)
  • The Ten Best Cities for Newlyweds: #2 (Forbes.com)
  • Best Places for Bargain Retirement Homes: #3 (Forbes.com)
  • America’s Most Wired Cities: #1 (Forbes.com)
IMG_1693

North Carolina State Capital Building

 

IMG_1695

 

 

IMG_2123

Peele Hall – my office location at North Carolina State University

 

3. I can walk to work - as much as I enjoyed living in Charlotte, I do not miss the traffic and my old commute to work.  We lived within the city limits and only about 8 miles from my office Uptown, but it took me around 40-60 minutes to get to work everyday.  In all of the places I have lived, I have never been able to walk to work, which is something that seems insignificant, but was always something I wanted.  We are currently living in the Cameron Village neighborhood of Raleigh, and with me working at NC State University, walking to work is now a reality (e.g., note the first sentence in this post)!

4. Atticus’s speech – there was a time when we really did not know what to expect regarding Atticus’s ability to speak intelligibly.  Hearing him talk non-stop now – it is sort of hard to remember that that was  ever a concern.  Nowadays, he spends his time talking up a storm, asking “What’s that?”, singing his “ABC’s”, and “Jingle Bells”.  We have been told by his new speech therapist that his speech is exactly where it should be for a 2.5 year old, and probably even more advanced than your average 2.5 year old.  She also said that if she was not looking at him, and just listening to him, she would never guess that he had any sort of oral anomaly.

5. We are 2 hours closer to PA – not only does Raleigh have everything we are looking for, but this move also puts us around 2 hours closer to our familes, who are heavily concentrated in the Northeast.  It’s always been important to us that Atticus see his extended family regularly, even though we live far away.  Being a little bit closer makes it easier on everyone and I believe it has already increased the number of times we’ve been visited by family!

6. First extended family vacation – in July we took our first extended family vacation, which included grandparents, aunts, and uncles.  Since Washington, DC is the halfway point between where we live in NC and where our families live, and since there are endless amounts of things to do there, it was a no brainer!  We had a week filled with fun and educational outings, and just bonding in general in the townhouse that we rented.

2014 has been an extremely transformative, productive, and eventful year.  A lot has happened – more than I have the energy to write about in this blog.  For all of the good that happened in 2014, there were also times of hardship and times that we were tested, but life has a way of working itself out, and you emerge a stronger person in the end.

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.

 

Seconds

The past couple weeks have marked some pretty big milestones.  October 31st was the second year anniversary of Atticus getting his tracheostomy.  November 7th marked the second year anniversary of Atticus’s major tongue reduction surgery.  I remember when Atticus first got his trach, we couldn’t hear any of his little noises – not even his cry.  He has come such a long way since then.  His speech is even better than your average 2.5 year old, even with his enlarged tongue.  And even with a trach, you can understand what he says perfectly.  He is so talkative that it is hard to imagine that we were ever concerned that he wouldn’t be able to speak intelligibly.

The little boy in the train engineer costume had an amazing Halloween.  He went trick or treating and came home with a Frankenstein bag full of candy.  What a welcome change from spending Halloween in 2012 in the hospital getting a trach and gearing up for a major tongue surgery.

IMG_2435

This is also a big week for Atticus.  He will have his second treatment with Dr. Richter at Arkansas Children’s Hospital at the end of this week.  He will have another round of sclerotherapy (bleomycin injections) and he will get more lasering done to his lip.  It will be very exciting to see the results that we get from this treatment, especially since it may take a couple treatments to see results.  We do think that we see results from the first treatment though – so we will excitedly wait to see the results of the second treatment.  As always, there will be swelling afterwards, so it’ll take a month or so to see the effects.

Stay tuned!

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

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

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!

 

Follow

Get every new post delivered to your Inbox.