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.