All Caught Up

Payton had a final therapy appointment today, and the results: no more delays! She is no longer enrolled in early intervention. It's bittersweet for me. I'm so happy and proud of her that she's caught up to her age and beyond, but I enjoyed her sessions because I learned so much about her development and where she needs to go. She's still a little behind (by 1-3 months) in gross motor but that's because she's super cautious. Everything else, she is 30-36 months yay! And when she was asked if she was a boy or girl, she answered 'Pirate' :)

I just can't believe surgery was already almost two years ago.

And now I have a even more healthy, beautiful, full of spunk little girl. (Oh no, I have a little girl, what happened to baby and toddler years!!!)

Thank you for all the support, love and her amazing doctors! We are both so blessed.

Oh and a peek at her pirate face.

One Year Surgery Check Up

It's me, Payton again. On Friday I had my one year check up for my cranioplasty surgery. It went well, it's always a long appointment and a lot of doctors looking at me. The speech therapist was happy with how many words I have and how well I can understand things. The orthodontist liked my teeth, felt like he was doing a full exam. I let him know I was not happy with that. My plastic surgeon said I am healing really well and my screws and plates should be dissolving soon. He mentioned that sometimes with forehead reconstruction the eyebrow bones can become flat but mine aren't like that and not to worry I'll grow into mine. I wasn't really worried about it till now. Thanks. I get to go see my neurosurgeon in about six months to get another CT or MRI scan done again to check my ventricles. Since I'm catching up on my milestones they're not too worried about hydrocephalus I might just have a big brain, that just means I'm smart right? That's what mommy tells me. I have to go back and see the developmental pediatrician next month so they can see why I'm not walking. He said I can play in the big play room and I'll see an occupational therapist and maybe physical therapist. They're not too worried but they check out all babies who don't walk after 16 months. I consider us smart, I get carried everywhere. Although mom is catching on and making me walk some more. I guess I knew it was going to come at some point. Anyhoo, I'm doing really well from surgery and don't have to go back to see the whole doctor entourage again for a year... woohoo... Thanks again to everyone's support through all this past year. Love, Payton

Little Fishy...

Today was kind of an 'eh' day and over 90 degrees out so I figured it would be a good time to get Payton a little pool. There's not much to it, didn't get the one with the slide, not until she can enjoy all the extras. Hey it gave me another opportunity for a photo shoot :)

She's doing really well from surgery, seems to be back to normal minus the incision. And even that is healing pretty well. She keeps itching the incision but she doesn't know how to scratch so it's more like someone massaging their head. It's cute though.

Here is a look at her scar... 8 days post op

I think she likes the pool. When I first put her in it she got mad because it wasn't heated :)

I love how she scrunches her nose!

This is what Reese thinks of the pool.

Day 3...

Last night Payton's swelling started to go down already!!! First I noticed more of her eyelashes then her eyes were open just a little, and you can tell she was really trying to open them too!!! So sweet. Here is a photo from last night. (sorry, it's a little blurry)

She did well when they came to take the bandage off and drain out this morning. She fussed but I think it was more the fact they were messing with her.

Back to being happy camper!!!

Her incision... Now just waiting for the word to go home. She is still having a little trouble keeping fluids down. Most feedings she can keep down though... I'm just so thankful for everyone who has been there for us and their prayers. They worked!!! She is doing wonderfully!!!!

Day 2...

Payton is doing well. As well as the Doctor's have expected. She is very swollen, both eyes swollen shut. They are going to take her drain out tomorrow just to make sure it doesn't add to the swelling. She is sleeping well, doesn't seem to be in pain really. I'm able to hold her and she seems comfortable, and able to lay her head on my shoulder now. Just barely but we're making progress. Swelling should noticeably start going down on Tuesday.

She is not holding fluid down too well. Pedialyte is okay but formula is still a no go. How do I know? I'm wearing her lunch. If she can't start to hold down food better soon, we may have to stay longer for them to monitor her. If she can handle formula soon and have more wet diapers then tomorrow afternoon is a real possibility.

Here are a few photos from this morning. She is was wearing her new gown I made her but it's soaked in formula. But when we get home maybe she will be feeling better to model. I have fabric to make a few more anyways. I used another Heidi and Finn pattern.

Her in her crib covering her eyes (I turned the light on so I wouldn't have to use flash, bad mommy)

Close up of her eyes :( You can see the fishy/paisley fabric I used, the lining is just a T-shirt

Rubbing her eyes... You can see the outside tie of the gown and the roll cuff sleeve. I think the way the did the bandage makes her look like a little china doll.

Her new puppy a friend of mine from work brought her :)

Surgery is over...

Again, arrive at 5am but this time they were able to complete surgery. They took her back to the OR about 7:40 and actually started operating at 9:30, they were done about 1:00. So it wasn't too bad. She is all drugged up on morphine so she's pretty out of it. She will be in the PICU tonight and should be able to move to the Pediatric Ward tomorrow and will be there until Monday or Tuesday. She did have to have a blood transfusion as expected however she did not lose as much as they anticipated :) The surgical team was fantastic and everything is going well so far. Thank you to everyone for your prayers and support, also those who sat with us in the hospital, thank you. We will keep you updated!

Oh and the horizontal bump on her forehead is just a temporary drain... 

Update #2...

We got up at 3 this morning :( to be at the hospital at 5 to check in and start what we anticipated to be a long day. Check in and vitals go well then the Neurosurgeon pulls us aside to inform us they will not be doing the Cranioplasty procedure today due to the PICU (Pediatrics ICU) being occupied with five infants on ventilators. :( She has to go to the PICU for recovery because of the blood transfusions and she has a good possibility of being on a ventilator even just for a few hours after surgery and needs that special care.

-waiting to go back to the MRI, wondering why we're up so early-

They did proceed with the MRI, and they did not have to do the VP Shunting!!! All four of her ventricles are enlarged, but they are symmetrical and the passageways for her fluid to drain through are open and clear. So her brain isn't under pressure which is good. The Neurosurgeon is going to run some more tests on the ventricles about 4-6 weeks after the Cranioplasty to monitor it so we're not totally home free yet, but possible!

So thank you to everyone's prayers and concerns, they worked and have been such a blessing. Surgery has been rescheduled for next Friday so keep our fingers crossed it is a go this time. The reason for a delay in rescheduling is the amount of people that are involved with this procedure. Neurosurgery, Plastic Surgery, Anesthesiology, Blood Bank, PICU and the OR has to be free and in a military hospital, well, that can become difficult. But, it will get done  this month, it has to, plastic surgeon is deploying and she can't get too old before they do it, so hopefully Friday goes well or something opens up sooner... at least I have more time to make some more little kimono dresses for her :)  Thanks again to everyone, it means so much to us!!!

Update on Payton...

So quick recap: about 3 weeks ago Payton was diagnosed with Metopic Craniosynostosis. We did the x-rays, CT scan and Craniofacial board. We met with the Plastic and Neurosurgeons today and surgery is on Thursday at the crack of dawn. The surgery is going to consist of them putting her under then they will be cutting from ear to ear on top of her head and removing the forehead part of her skull. They will reconstruct it and put dissolvable plates and screws then stitch her up. She will require a blood transfusion during surgery and will be in the hospital about two maybe three days.

On the CT scan they found that her lateral ventricles were enlarged and her brain had extra fluid that wasn't draining properly. This can cause extra pressure on the brain and possibly delay her development and may be why she is 7 months old and can't sit up at all. They are going to do an MRI before the surgery and if the extra fluid is causing pressure in the brain and not draining properly, they will have to put  Ventriculoperitoneal Shunting in her. This is a tube that will go into her brain, run down her side and into her abdomen and drain excess fluids in there. This will be a permanent thing for her and will have to see a Neurosurgeon yearly until she is done growing. We will not find out about the shunt until Thursday morning after the MRI.  They did show us her CT scan and they did a 3D model of her skull, I will say that was pretty interesting, weird, but interesting. 

Please keep her in your prayers, we will keep you updated!