End of June Updates

June ended up being a much busier month than originally anticipated!

All of the things in red are Abby appointments, whew.

We received the news from neurosurgery regarding Abby's CT scan and got her in for a sedated MRI to determine whether or not she would require a shunt to drain the fluid pooling in her brain ventricles. Thankfully, it was determined that a shunt was not going to be necessary! Yay!!!! Everything is flowing as it needs to, it's just not doing so in a symmetrical fashion. At this point, nothing needs to be done to remedy the ventriculomegaly. Great news. The craniofacial team will do another assessment of her skull in September before we move, but we are otherwise done with Neurosurg for the time being.

We headed back to orthotics to get Abby a different helmet (helmet #3 if you're keeping track). It doesn't have the big hole on the top like the other two did - this is to encourage her skull to round out more. So sweaty.

Luckily they put wiffleball holes in the top so her poor noggin can breathe a bit!

Ophthalmology changed up her patching routine to 2 hours a day, but only the left eye, as her right eye muscles need more work. I took this opportunity to get her some more stylish eye patches!

Abby also had her sleep study in the middle of this month. We just got the results yesterday, and unfortunately, they are not what we were hoping for. Abby's sleep apnea is worse. She is obstructing more frequently than she was at her initial sleep study in January, and her sats are dropping lower during those episodes. This is bad-news-bears for her heart. In adults, untreated obstructive apnea can cause the blood pressure to rise and the heart muscle to thicken. As Abby's heart muscle is already significantly thickened, it is necessary to start looking for other options to address the apnea, since the oxygen she is receiving overnight isn't doing what we need it to do.

The first step is to attempt a CPAP trial. I insisted this be done inpatient, considering the only time that we've attempted CPAP with Abby was when she coded after her heart surgery. There was no way I was going to try that at home. This means a couple days on the pulmonary floor at CCHMC (it will be so weird not to be with our cardiac people) sometime in July. If this goes well, then we'll start using the CPAP mask at home. If not, we have to start looking at surgical options. An X-Ray of Abby's tonsils and adenoids was taken today, as they are the frequent culprit in obstructive apnea and removing them is the least-complicated surgery, but from reading the report, it sounds like they're fine. We will be consulting with ENT and their surgeons to figure out what we look at next. 

Cardiology is encouraging us to get on top of this before we move, which I understand, but definitely makes things even more hectic than expected. 

So that was June. We did get to celebrate a lovely Father's Day and cheered as Abby mastered rolling belly-to-back, but yeesh, I hope July will hold fewer surprises on the medical front!

10 Months Old!

10 months. 10!!!!! Abby has now been an outside baby longer than she was an inside baby and can finally celebrate the great accomplishment of being out of the hospital as long as she was in the hospital (approximately - I didn't count days. Also includes our first two blips at home). Good job, baby bird!!!! 

Abby has some big stuff coming up this month. Tonight, she has her repeat sleep study to assess the severity of her sleep apnea and whether or not she needs to remain on oxygen at night. Given that we cannot, for the life of us, keep the cannula in her nose for more than five seconds (she pushes it out even when she appears fast asleep), it would be awesome if she no longer needed it! I think they should make sleep studies a dual venture: hook the kid up to examine their sleep habits, and hook the parent up to study the effects of sleep deprivation. So much valuable information to be gathered. 

Abby also has her MRI next week, which I am admittedly quite stressed out about (please see previous post for details). She still has this lingering cold, which needs to be gone before it will be safe to put her under general anesthesia. Hopefully this next week will be enough time to finally kick this thing.

We've been getting lots of questions lately along the lines of, "Is she mobile yet?" "Is she eating by mouth yet?" "Does she have any teeth yet?" "Is she saying mama/dada?" In short, the answers are: nope, nope, nope, and nope. And that's ok. She's making progress little by little, and given all that she's been through, I think that's pretty fantastic. She IS making all sorts of adorable noises, grabbing her feet, rolling onto her stomach, working super hard to roll back off of her stomach, and is getting closer and closer to sitting unassisted. We attempt tastes of baby food, which she promptly gags and pukes up, but she gets the nutrition she needs through her g-tube, and that's what matters. She enjoyed her first baseball game, finally made a trip to church, admired the jellyfish at the aquarium and planes at the USAF museum, slept through a strawberry festival, and has been frequenting local parks. She's very busy. :)

Abby currently loves grabbing faces, including the dogs', lounging back in her stroller with her feet up on the lap bar, helping with her g-tube stuff, and reading stories with us. She is pretty much happy unless she's over-stimulated, and just generally a joy to be around. We like her an awful lot. 

Jameson wrote Aberdeen's letter this month. :)

_______________________________

Aberdeen,

I sit in our Ohio home with just the dogs while you and Mom are at the hospital doing a sleep study. I'm pretty sure you're not going to enjoy it very much (smelly glue on your head), but maybe I'll be pleasantly surprised. Sitting here has given me some time to think about you and your life. You've been outside of Mom for 7,296 hours! That means a lot to me, because I didn't always know that would happen. But you've spoiled us rotten over the past few months. We've been living at home and not going to the Emergency Room, or even the hospital, except when we wanted to. Thanks!

 

You're hollering at me a lot more, which is nice. You get super excited when I carry you facing me in your car seat.

 

I'm super bummed when I have to leave you, but I feel this new drive to do a really good job so that you'll always have what you need.

 

I love your smile and your pretty eyes and dancing with you. My favorite time of day is reading to you before bedtime. I really think you're listening to me (even when my Winnie-the-Pooh voice is atrocious). We snuggle together with your head really close to mine and we go on adventures through bizarre lands of Wockets, Circuses, Dragons, and Tiggers. As we roll around and look at pretty pictures together I'm truly happy. I laughed so hard the other night that tears started running down my face. I was trying to do all the voices in a book and found myself doing a 1950's radio announcer voice for an 8-year old who was talking about zig-zaggity ladders. I don't remember being that happy and carefree.

 

Lately, I've felt this urge to explain how tough we are to other people. It's the weirdest thing, because they'll ask if you're doing alright and I feel like telling them all of the things that you have coming up and that you may never be alright, so there! It’s like you being alright is “wimpy” and if you’re not doing poorly then what makes us special? Pretty weird feeling, but I’m sure I’ll get over it.

 

The future with you is always a big mystery. I’m believing and trusting God more, which makes it more bearable.

 

Thank you for still being here Aberdeen. 

 

Love you always and forever,

The Luckiest Dad in the World

Updates on the noggin

A lot has been happening lately, so I thought an update was in order...

Abby had a 3D CT scan done in the middle of May as a follow-up to her cranial surgery back in September. With some creative soothing and quick-thinking by Jameson, we were able to accomplish this unsedated, woohoo! The scan was to determine how the skull bones were healing post-op, if there was any re-fusion of the sutures, etc. We would be following up with her neurosurgeon a couple weeks later.

Thanks to MyChart, we were able to see the radiologist's report fairly quickly, and while we aren't neurosurgeons, we knew that things didn't sound overly awesome. There was evidence of possible fusion of both coronal sutures, as well as a big, scary word: hydrocephalus. Basically, hydrocephalus involves a buildup of fluid in the brain ventricles that can lead to increased intracranial pressure (which can cause brain damage). We sort of expected the neurosurgeon to call us in right away for an emergency surgery of some sort, like he did last time, but a few days went by with no word.

We went ahead and called neurosurgery to get their thoughts, since consulting Dr. Google had been rather fruitless, but they weren't confident in the accuracy of the CT results and recommended that we get Abby in for a sedated MRI to determine what exactly was problematic and what just required watching - for Abby, sedation means general anesthesia. After some scheduling complications, her MRI is now set for the morning of June 17th with cardiology monitoring her for the rest of the day. If the MRI suggests increased ICP, neurosurgery will need to place a VP shunt within the week to drain the excess fluid. We're really really hoping this won't be necessary.

At her neurosurgery appointment, which was this past Tuesday, we were encouraged to hear that re-fusion of only the right coronal suture is suspect, and that depending on how helmet therapy goes over the next couple of months, she may not need another craniectomy (surgery for craniosynostosis). 

Speaking of helmets...

At the end of May, Abby was fitted for her second helmet, having solidly outgrown the first. I put all of my limited craftiness into decorating the new helmet, which turned out pretty cute, if I do say so myself. Sadly, neurosurgery wants her in a DIFFERENT kind of helmet this time, so back to the orthotist we went today, to get her head scanned yet again. Hopefully we'll receive the new helmet and get back on track next week.

Abby, looking like an unimpressed, but adorable little garden gnome at her scan today:

Bye bye pretty helmet. 

So, that's where we are. Despite Abby having another cold, her behavior does not suggest ICP, so we're holding out hope that the results from the MRI will be positive. 

I was looking through old pictures the other day and thought it would be fun to show you how great her head is looking these days. I barely remember it looking the way it did pre-suturectomy and am amazed at the change since September.

August/September:

 

May/June: