1st Day of School and Medical Updates

Abby started her second year of school this week! She did so well last year, that we decided to opt for the full-day program this year. We aren’t sure whether or not she can handle a full day of class, but we know that we are in the most wonderful, nurturing school right now, and if we’re going to try to push her, this is the place to do it. She is in the best hands and we are so hopeful for another amazing year.

We have also had a couple of medical follow-ups this month. Her ophthalmology follow-up was a couple of weeks ago, and a little inconclusive. Her optic nerve swelling has not gone down, and may actually even be worse, but the ophthalmologist thought the increase in swelling may be consistent with the amount of time between his original diagnosis and the actual date of the shunt revision. Apparently it can take quite a while for swelling to resolve, and he wants to see her again in a couple of months.

Today’s neurosurgery follow-up was equally lacking in concrete information. Basically, they did everything they could for the shunt and now we just have to wait and see if her skull needs to be expanded. They want to do another MRI around the first of the year, and we’ll go from there. I don’t love the watch and wait routine, but we’ll do what we have to do!

Aberdeen’s 5th Birthday!

I don’t know if everyone is as taken aback by this as I am, but there’s a part of me that truly can’t believe that our amazing Aberdeen Wren, my baby bird, is FIVE years old today. I won’t say that the time has flown by. It hasn’t. Some periods of her life have actually gone by agonizingly slowly, but she is here, FIVE, and that feels astonishing to me.

Abby is a few weeks out from her surgery now and she’s doing fabulously. She was back to her happy self by the next day, and her incision is healing really well. We have her ophthalmology follow-up next week, and will hopefully have a clear idea of whether the problem is truly fixed now.

We’re so thankful that she got to have a fun and joyful day today. Fingers crossed for good news this week!

Day of Surgery

Abby’s shunt surgery is today. Her neurosurgeon isn’t happy with the way the catheter on the shunt is entering her brain ventricle, so the plan right now is to move the shunt altogether (not just a revision). Hopefully this will go smoothly and the neurosurgeon will be able to tell whether or not it truly is a shunt malfunction causing her increased ICP, as opposed to her skull simply not being big enough again. Abby is in good spirits this morning, and we’re all checked in and ready to go. Will hopefully be able to update as the day goes on, but Blogger isn’t super cooperative on my phone these days. Thank you for your continued positive thoughts.


Update 9:15am: Surgery is done! Things sound hopeful. The neurosurgeon was able to revise the existing shunt by adding a right-angled connector to get the catheter better situated in her ventricle. Not having to insert a whole new one should make recovery easier on Abby. He said that initially there was zero fluid coming through the shunt, indicating that it was definitely not working. When he was finally able to get fluid to come through the line he said the pressure was quite high, so hopefully this will have been enough to remedy her ICP. We won’t know for sure until her optic nerve swelling goes away (or doesn’t), which could take a few weeks. We’ll hopefully get to see her in the PICU soon.

Update 6:00pm: She’s doing great, perked up in the last hour and is totally acting like herself again. Slowly doing some food and water and we’ll see what tomorrow holds!

Update 11:00am Wednesday: She’s home! She’ll see ophthalmology in about a month, and we should have a better idea of next steps at that point. We’re thrilled to have her home so soon. This went way better than we imagined and we’re remaining hopeful that her optic nerve swelling will go down!

Reactivating...

Oh, hi! It's us again. I won't lie, it sure was nice to let this blog go dormant for a while, but we're back.

Abby has made such amazing progress lately and has had so much fun getting to just "do life." We welcomed her baby sister, Joanna, in January, watched as Abby started walking independently, and cheered as she completed her first year of preschool. She made some wonderful friends this year and has been the best big sister ever, always ready to give "Baby JoJo" hugs and kisses. She asks about her sister first thing in the morning and wants to see her right before she goes to sleep each night. It's been amazing to see her take on this new role in our family.

We have been so happy with how well the last couple of years have gone, and we are looking forward to celebrating Abby's 5th birthday in August! But before we get there, we have at least one big hurdle to jump.

We found out last week at a routine ophthalmology appointment that Abby's optics nerves are swollen again, which means that her intracranial pressure is on the rise again as well and will require surgical intervention. After a quick MRI and a long discussion with her neurosurgeon here in DC, we've decided that the best course of action right now is to attempt revise her shunt in case it's starting to fail. If you'll recall, Abby had a VP shunt placed in Feb 2017 to reroute cerebral spinal fluid out of her brain ventricles after her intracranial pressure didn't go down enough post-cranial surgery. Unfortunately, shunts are prone to failing, and when they do, CSF starts to back up into the brain again.  The size of her brain ventricles didn't make it undeniably clear that this is what is happening, but there is enough fluid collecting on the surface of her brain to suggest that it *might* be the issue. The alternative is that she's outgrowing the size of her skull again. As this would require another extensive expansion surgery, we don't want to start there. If after the revision there is still evidence of high intracranial pressure, then we may have to cross that bridge, but we're going to hope that getting her shunt in a good place will be enough to at least buy us time. She'll have a venogram soon (CT with contrast) to give the neurosurgeon a visualization of the veins in her head, since this was a huge point of complication last time around. Surgery will take place mid-July.

Thankfully, Abby has continued to be her sweet, happy self through everything, though she has definitely picked up on the serious tone of the last few appointments. We're planning on having a fun 4th of July and hope that Abby's recovery will be smooth enough to not interfere with her birthday or the start of school.

Catch-Up

Oh hey. So, the last 4 months...

We moved! We drove across the country at the beginning of August to our new digs in DC. The trip itself was fun. My sister joined us to help out, and we made stops in New Orleans and Atlanta, where we celebrated Aberdeen’s birthday with the Georgia crew. The move as a whole though was really hard. We spent just under two years in Texas and dealt with a great deal of medical upheaval during that time. By the time I was starting to feel totally settled there, we were up and running again. Getting Abby established with yet another new team, dealing with some new environmental allergies for Abby that resulted in an uptick in vomiting, and adjusting to a bit of a culture shock (DC is BUSY) left me feeling extremely overwhelmed...hence the radio silence. Sorry about that. I’m feeling much better about things now. We’re past the initial appointments with Abby’s providers, got the allergy thing figured out, and are well established at therapy and such now. 

Abby is doing SO. WELL. I don’t want to jinx anything by saying this, but honestly this is probably the best she’s ever done. She’s had a nice break since her last cranial surgery, and her development has really taken off. She now knows her ABCs (and even vocalizes quite a few of the letters in addition to knowing many of the signs), numbers, colors, has officially mastered the transition from laying down to sitting (which has been a huge hurdle), can pull to stand from sitting on the floor, and is flourishing overall. She got glasses back in August, which are too cute, and she’s enjoyed all of the visitors we’ve had lately. She had a blast on Halloween and signed, “trick or treat” all throughout the neighborhood. We spent a lovely Thanksgiving in Williamsburg, and have been participating in lots of holiday fun.

Because things are going so smoothly, we’re going to try this thing called "just living life" for a bit. Crazy, right? Lol. I’ll pop in here and there, but probably won’t be updating here nearly as often. I’ll make sure to chime-in with any big, exciting news, but will leave you for now with lots of pictures from our last few months:

Coke Museum in Atlanta

Georgia Aquarium

Abby's Elmo-themed birthday party

Happy 3rd Birthday!!!

Washington Monument in the background

Her new accessories

Lincoln Memorial

Back at it again

Fall fun!

Halloween

Thanksgiving in Williamsburg/Jamestown/Yorktown

Winter fun!

Happy Holidays!

Story of a Heart Mom

I know that I have woefully neglected this blog lately, and for that I am very sorry. I will do an update post soon (I promise). In the meantime, The Mighty has published another one of my pieces, and I wanted to share some backstory on the "Story" -

I wrestled with what I wanted to do with this piece for months.  It was my first attempt at a picture book, and I spent a considerable amount of time working on illustrations (digital composites of watercolors and photographs), hand-lettering, and revising, revising, revising. A lovely friend offered to edit it, and I felt like it was polished to super-sparkly status. But something about it never sat quite right. I wanted to tell a story that said, "My child is complicated, but my child is valuable. She has worth, and feelings, and a purpose." I wanted to prove that point by telling Aberdeen's story, from Aberdeen's perspective. Ultimately, though, what I was writing were MY thoughts and feelings, and it didn't feel right to assume that what Abby thinks and feels mirrors what I think. After getting some really good advice at a writer's conference, I decided to rework this piece to more accurately reflect what it was already trying to say. It's probably not as sparkly anymore, and it definitely doesn't follow the "rules" of a picture book, but I feel good about it. It's still her story, but it's also my story, it's also Jameson's story - it's our family's story. Even though my plans for this piece changed considerably from what they were at the start, I'm still extremely proud of the work that I put into it, and thankful to all that took a second to read it and give me their thoughts (for some, that was like 20 times). I have other pieces that I'm currently trying to get published, but this one (for now at least) is going to stay in internet land. Enjoy.

The Story of a 'Heart Mom' - The Mighty

(I also included a few of the other illustrations I worked on that weren't featured on The Mighty)

Apprehension

Life

Anniversary Updates

It is the one year anniversary of Aberdeen's second heart surgery - the BIG one, the scary one, the one that was a last ditch effort before having to talk transplant. I am happy to report that her most recent echocardiogram showed NO regrowth following her operation. Most of her heart is still very thick and may be problematic at some point, but the obstruction that was causing her major issues last year is still gone and her gradient is within normal limits. Feedback from the craniofacial team was also positive, and ophthalmology said that her optic nerves looked great (which means no more intracranial pressure - the shunt is doing its job. Woot). They did give us a prescription for glasses that we're going to get filled once we get to DC, but we're pretty well convinced that they are just going to take Aberdeen's cuteness factor to the next level. It felt so good to receive such positive reports as we get ready to pack our bags and move across the country again.

My tiny bookworm

Fiesta at Mission San Jose

Mother's Day trip to Dallas with Nana and Uncle Justin

Hiking with Auntie Jubie

Visiting with Grandma and Poppa

Father's Day fancy dinner

4th of July

Our first and last trips to Texas Children's Hospital

Overall, Abby is really doing well right now, and it has been so nice to have a quiet few months on the medical front.  She is hanging out at about 33in and 25lbs, and will be three in just a few short weeks! She is still all about Elmo, throwing balls, and reading books. She adores our two, big, dopey dogs and thinks that most people are generally hilarious. She recently acquired a few more consonants, which has already helped her make strides in her speech, and I feel like her motor skills have been really coming along. We are so proud of our goofy, adorable girl and can't believe that at this time last year things were so tenuous. She exudes so much joy, and I'm just so happy that things are going well for her right now. Kid deserves the break.

Trying on clothes that belonged to Mommy and Aunties

This outfit is Popsicle brand!

Things seem to be falling into place with the organization of Aberdeen's care in DC (knock on all the wood), we have secured housing on base, and hopefully everything with the move will go as smoothly as humanly possible (knock on wood more times). We're all excited about the prospect of having four seasons again and are optimistic that the DC area will be a good fit for our family. Aberdeen, the dogs, and I have never lived on base, so that experience should prove interesting, but I like the idea of being able to walk along the Potomac once weather permits! We will definitely miss a lot of things about Texas though. It has been great having a few family members reasonably close by and Abby's therapists and providers here have been wonderful. We are sad to say goodbye to our friends and our lovely home, and I, for one, will also miss the abundance of delicious Mexican food. 

Hanging with the dinos at the Witte Museum

In other news, my letter to my pregnant self was recently published on TheMighty.com!
https://themighty.com/2017/07/letter-to-self-child-born-with-noonan-syndrome/
I am in the process of querying literary agents with my picture book manuscripts and praying that someone will give my work a chance. I have been having a lot of fun getting plugged into the children's book community and look forward to making more connections after our move!