One year later

One year ago today. It doesn't seem like enough time has gone by for it to have been a year! It feels very surreal to think about where we were a year ago. 

Our sweet girl is doing pretty well. Her hair has grown back enough that she decided to get a shorter cut and now it blends in pretty well and looks very nice on her. 

Jaylia and I (Joanna) are headed back to Philadelphia March 20th. She'll have a neuro-opothomology appointment, CT scan, and see her surgeon, Dr. Taylor. She is also participating in a research study to see if an MRI can reproduce the same results as a CT scan without the radiation from a CT, so she'll have a long MRI as well.  Pretty cool that she has this opportunity to be part of something that can help others. 

As far as how she is recovering from the surgery I won't know any of that until after these appointments. There are spots and things that concern me, but we'll see what the scans say.  She's never had "typical" high icp symptoms so I tend to be a more suspicious of things that are just different in her behavior. 

A beautiful friend of mine has made Jaylia a special cake, I'll be posting pictures later today! We are so excited to celebrate this anniversary! Here are a few pictures of the last year! 

The day we flew out last year.

On the ride to the hospital.

She got so serious while we were waiting for her surgery to start. The enormity of it all sunk in. She did not easily comply with anything during this stage of the process. Thankfully she doesn't remember any of it now. 

After surgery. Man that was a rough 2.5 days. She would cycle through sleepy to vomiting and back to sleepy without much wake time in between. Getting her to eat was difficult and at one point she was asleep and her blood pressure bottomed out I think it was the second night in icu. I wrote about it at the time, but in retrospect I remember waking up while they were giving her fluids and meds to stabilize her and not really realizing how scary of a situation it was until much much later. Thankful for God's protection over my girl. 

They moved us to the surgical floor day 3 at about 3- 4am and removed her bandage at 6am. Really rude wake up that morning for her! She cried after they left the room, it was brutal. Over the past year she's had moments of upset over it, but overall has been a very brave warrior! Getting a pretty cut so the shorter pieces blend into the rest of her hair just recently has made her so happy. 

When the swelling set in! In the moment, I remember thinking, "oh she's not that swollen compared to other kids I've seen after surgery!" Now looking back I realize how truly swollen she was!! It did go down relatively quickly though, especially after we left the hospital on day 5. 

We were able to visit Mount Rushmore in August, Jaylia was excited to see Pennsylvania along the Avenue of Flags. Safe to say this state holds a special place in all our hearts now. 

This is after her haircut just last month. It's amazing to see how her forehead has rounded out during these months of healing. We are so thankful for her doctors at CHOP who looked beyond the "normal symptoms" and helped our girl. 

One Month Later

April 7th (yesterday) was Jaylia's one month Cranioversary! 

 Her surgeon cleared her for all normal activities! It's crazy how fast this month has gone and what Jaylia has been through and how far and fast she has healed physically. 

 The healing process for this surgery involves her skull remodeling and settling into it's new position. It's normal to hear clicking during the healing process. Jon and I can hear it sometimes, (she says she can't), but we want to wrap her in bubble wrap until it stops! 

Jay, however, is happy to be making plans to swim and jump, and ride her bike (with a helmet)! 

We received a lovely and DELICIOUS pie from our friend Jake and the Huckleberry Patch in Hungry Horse, Montana. You should definitely stop there if you are ever in the area!  They have great ice cream and shakes as well as pies! We enjoyed this huckleberry pie warm with a bit of ice cream! YUM!

Her hair is growing back and her incision is basically all healed up. Unless you are really looking it's easy to not even see her scar. She's loving the half hairbands when we go places, and is still sensitive about being seen without it. 

We are getting back to normal with school as well. We are almost done for the year which is very exciting! I cannot wait for summer!

Thank you all so much for the love, care, meals, and most of all prayers! I don't know how we would have gotten through all this without our family and friends! Love you all!! 

 

Lazy days

 Saturday we slept way in, about 12 hours total..it's safe to say we were all exhausted. Jon and I ordered in some Indian food that was delicious! Jaylia enjoyed a burger and mcflurry! 

Sunday we had a bit more energy, and went for a few walks around the neighborhood. Jaylia's swelling decreased a lot! 

We had to get some Dunkin donuts, though they weren't as good as I remember. 

Jon and I liked the Indian food so much, we went to the restaurant and had their buffet for dinner. Jaylia didn't want Indian food, so she played on her tablet while we ate and we grabbed her another burger and mcflurry on the way home. 

Monday (today) we planned to go to the Ben Franklin Institute and see the Harry Potter exhibit, but Jaylia woke up not feeling 100% so we stayed home. We may try to go tomorrow. She slept a bit and woke up feeling better. 

As you can see her swelling is way better! Her incision looks good and we have a follow up with her surgeon on Wednesday before we fly home. 

It all feels so unreal. It took about a year from finding the craniosynostosis to surgery, and I'm still in disbelief that it all happened. I look back at photos and study her skull to see if I can pinpoint when it started, or if it was ever asymmetrical, but nothing jumps out. I thank God for guiding us to finding it and for protecting her. Jay is processing it all too, we were talking last night about the surgery and how he did it and why it was important. She seems to understand, and now that we are through it, it doesn't freak her out. 

In less deep news- Jay is getting pretty good at yo-yo-ing!

A very good day

We found out that M-F the Child Life team puts on a Bingo game on the TV channel in the hospital at 2pm. So we got her Bingo cards, and played two rounds! Jaylia won three prizes just before it was time to leave for her CT scan. She doesn't mind imaging, so hopped right up and talked to herself/sang the whole time. 

We then got to go to the Ryan Seacrest Studio in the hospital. She picked out three fun prizes, a fidget, a yo-yo, and some squishy things. 

We got back to the room, and she ate her pizza lunch. Then the doctor on the floor came in, showed us her CT, and said the plastics team was pleased and we could be discharged! 

So we packed up and got her meds from the pharmacy (just Tylenol and an otc antibiotic ointment!), ate dinner, showered Jay, the nurse took out her IVs, and out we went! 

Good news, her friend C was able to discharge today too! 🙌

We Lyfted back to the hotel. Walking back into the room with my girl, we had left with just 5days earlier made me very emotional. She went through a life changing event and we were just back to the hotel a "short" 5 days later. Jon and I are both amazed, thankful, worried, overwhelmed, exhausted, and loved!  We love our sweet girl so very much! Your love for her and us and your messages and support has helped sustain us so much during this journey! 

I will write more about the specifics of the surgery later or if you have questions feel free to message me, but for now, here is a screenshot of one of her CT images. It's safe to say I'm feeling very helicopter mom over her for the next few weeks especially, and even months while the new bone grows, heals, and hardens.

But for tonight, I am thankful to sleep in a normal bed, and wake up when we want, and not have vital checks every 4 hours! 

We are looking forward to a bit more sightseeing before we fly home on Wednesday. I'll make sure to share what we do!! 

TGIF

 Thursday we went down to the cafeteria and got her a fresh strawberry, banana, and pineapple smoothie. That seemed to remind her she liked food and then things got progressively better. She has pizza for lunch and dinner.  

After dinner, we got a call from Uncle Mark from Montana. He and cousin Choral are on a road trip out this way, and they had just come into Philly.  They were able to come into the lobby at CHOP and we were able to come down and visit! So nice to see family so far from home! They brought Jaylia the cute sloth seen in this picture! He's been hanging out with her! 

As Jay's energy returned so did her fight 😂 which is great but exhausting in it's own way. Even vital checks she'd kick and refuse to cooperate. 

Even the pulse oximeter was deemed painful and weird and impossible to sleep with. 

We got through her check at 10pm and then she watched a movie.  She was pretty weepy as the night went on and I snuggled with her all night. She slept through her night time vitals, and we skipped her 2am Tylenol dose and waited to give her 6am till about 7:30. She's not complaining of pain so we opted for sleep rather than Tylenol. 

When she woke up Friday morning, we made a plan to wash her incision and apply the ointment, then go to the cafeteria for another smoothie. She absolutely hates wound care time, so a plan for afterwards is necessary. 

Today we went with her friend , C. C had the same surgery plus some the morning of Jaylia's surgery. It's been so encouraging to connect with another cranio family in person.  I'm incredibly thankful for her and everyone in the cranio world I've met that has helped us navigate this.  Please keep C in your prayers for healing too, it's been a rough couple of days for them. 

After smoothie time, it was drain removal time.  Because she has been so oppositional to any proding, we made the decision to give her a bit of oxy prior.  Child Life came in and helped explain the why of what we were doing next and helped distract during the procedure. Jay refused initially, but ended up leaning her head on my arm while I held her hair out of the way as they snipped the stitch holding it in and pulled it out. It went quick, and she fussed a bit, but overall went WAY better than it would have without the oxy to chill her out a bit. Fun fact, oxy gives her nausea too. But I'll take the exchange. 

Next is a CT scan, and IV removal. Depending on how quickly those things are accomplished we'll be discharged either tonight or tomorrow. 

Everyone here has been amazing, our nurse this morning advocated for us to have more time for Jay to adjust and get comfortable before attempting the removal. Dr. Taylor is so kind and I can't thank him enough for taking Jaylia's case seriously and checking her pressure and making sure she had the gold standard of care.  I am beyond thankful for the continued confirmation we made the right calls in looking elsewhere for care and coming here. 

Craniosynostosis is impactful to older kids, don't let anyone ever tell you it isn't. 

"You should see the other guy"

 The swelling has hit and boy did it ever! It is totally normal and should start to go down from here the doctors said during rounds this morning. From this angle the incision site isn't visible, but it looks good so far, and is healing nicely.

Jay had a good nap yesterday and woke up asking for her bacon, so appetite is slowly returning. 

She's slowly warming to the idea of hairbands. I ordered a few another cranio mom suggested from amazon to get us started. They'll be delivered to an Amazon box near the hospital tomorrow. I'm hoping it'll help her feel more confident. 

Her tablet for some reason won't load Disney+, but they have iPads in the hospital that the kids can borrow, I was able to log in on there and she is happily watching bluey now. 

We'll be able to get some walking in today which will help the swelling situation. Working on figuring out what she'd like for breakfast now. Daddy has been able to sleep at the hotel the last two nights, and I've gotten a bit more sleep than at first too. The surgical floor is great, way quieter and there is a couch that folds into a twin size sleeping surface. I slept solidly from 11am-3pm yesterday, totally missed seeing the cutest little therapy dog. But he did cheer up Jay a little. 

Tears

 We both slept for about an hour until the doctors came in and told us they were taking off her bandage. Totally not a great wake-up 😬. 

Jaylia rolled over onto her elbows and knees and did not engage with them at all. They clipped the bandage off from the neck up. Once it was off she sat up and felt her head.  

The shaved strip is wider than either of us expected. She immediately got upset and started crying and whimpering. The doctors said she looked great and left. 

This room I can crawl in bed with her so I did and just held her. Eventually Dr. Taylor came in, he was very encouraging.  He said she could take a shower and take out the braids if she wanted to. He's thinking we'll for sure be able to use our original flight tickets home. 

Her incision does look really good. But she's been in tears a few times this morning. She said she is  worried her sisters and friends will laugh at her, even without her knowing. 

If you want to see a picture please let me know, I'm not posting anything yet because she's so sensitive about it, and I want to be respectful of her.