We got a family pool

we got a 10ftx6ftx2ft (it seems taller than 2ft) pool. Delaney and Julia LOVE it. I'm sure there will be lots of pictures through the summer in this pool.

Charlotte in As You Like It 30

Delaney gets AFOs

Friday May 28th Delaney got her DAFO 3.5s. She let him fit her with no crying or fussing. She didn't mind the different feel of the bigger braces until it came time to walk. They didn't allow her to hyperextend her knees as much and she literally fell with every few steps the first day. She still falls quite a bit now but is getting better. We don't leave them on as much as we did her smaller braces because of the heat and the hassel.

Benefit Garage Sale

Jess and I were looking at exactly how much we've spent for Delaney's stuff. This includes deductible, co-insurance, medication, bracing, adaptive equipment, gas, trips to visit far off doctors, special socks to go under braces, special shoes to go over braces, special creams, special soaps, special toys, and now we are needing to get a different carseat because of tone issues in her current seat. The amount that we've spent over the last 8-9 months for medical stuff that our insurance didn't cover is nearly $5,000! That doesn't even include the other stuff we've had to get. We have also met another little girl through a CP board who lives in another state. She has all the exact same issues occurring at all the same times. We've love for the two girls to meet sometime to know they aren't alone. Delaney sure loves skyping her.

We have decided to have a benefit garage sale and bake sale. We are asking our friends and family for donations of "stuff" that we could sell at the garage sale. We are also asking for baked goods or baked goods supplies that we can bake ourselves. Finally if none of those sound like something you or your family could do we'd love to have guests at our garage sale to make purchases and say hello!

Our garage sale will be the last weekend in June. If you can make a donation of any kind please email me (if you know it) or post a comment and I will get back to you. We can come pick stuff up or you can drop stuff off.

After the garage sale anything that does not sell will either be donated to the Goodwill or a local shelter/food pantry.

St Louis Children's day 3

Delaney woke up this morning very grumpy.

She only wanted mommy!

It was very sad!

Once she woke up a little and adjusted to the light she started feeling a lot better.

Then she became her silly self!

And for those of you who have never met her in person, here is her "talking" this morning.

Hospital Stay Day 2

An update since the last post: she had 12 of those jerking movements yesterday and a total of 5 throwing up episodes. Not a good day overall. It made us all very tired. The neurologist Dr Z looked at her tape and her EEG and said that when she's having those jerks it's not showing up as seizure activity so his hypothesis is that since she has hypotonic cerebral palsy it's just the myoclonus caused by that. It's certainly not normal but not unusual for kids with hypotonic CP. Those specific movements aren't classified as seizures but after listening to our accounts of what we've seen over the last couple months she definitely has seizures. Any person who has more than one seizure is said to have epilepsy so I guess we get to add that to our list of diagnosises. SIGH

Today has been better. She seems to be getting used to her little turban and is leaving it alone a lot more. She's also feeling better we think because she's been playing more and just more herself. She hasn't thrown up today but has had several loose stools. That's a lot better for us since it's easier to clean up! I had to go do a load of laundry this morning in the Ronald McDonald Room since she went thru almost every outfit we brought yesterday as well as getting both of her pink blankets dirty and some of Kathy's clothes. Her appetite is still poor but it has been since the bladder infection. Tomorrow is day 10 of the antibiotic so I'd hope she's better by now but it might be upsetting her stomach.

The best news from today is that we are being discharged tomorrow afternoon! Of course this is under the assumption that everything goes perfectly from now until then. Our little girl doesn't have a history of doing what she's supposed to so who knows. I'll feel more confident about it once the papers are in hand!

We had a couple visitors today! My great aunt Mary and cousin Jamie came to see miss Delaney. It was good to see them. It was very nice for them to come visit us here. We'll see them again in June at the family picnic so we'll catch up more then.

Okay now some pics from today.

Sleeping last night

Napping today

Reading her book

Eating breakfast

And our day ended with a rainbow!!!

St Louis Childrens

We are now at St Louis Children's for Delaney's video monitored EEG. A little background, she's been having seizures since March. They're pretty sure it's related to the nodules in her brain that they found in December. She started meds about 3 weeks ago and that's been going well but they really wanted this to get a long term view of what's going on in her little brain when these things happen.

Yesterday afternoon we left our other two girls and headed to great grandma's in Columbia. She lives half way between us and St Louis and since we needed to be here at 830 this morning we really didn't want to drive all 4+ hours here all at once and stayed the night with her. It was a great evening and Delaney loved it there. We even got her pic with grandma's little corner where Sandy and Grandpa's ashes are. It was very special. Here are some pics from last night.

Lounging in her new chair

Helping grandma in the kitchen

Posing with the Mizzou tiger

Visiting Grandpa and Sandy

We got up super early after a very long night (she would only sleep in grandpa's chair) and headed over to St Louis. We got here about 30 minutes early which was a good thing because once we got to her in her car seat we realized that she'd thrown up all over herself. She's never thrown up before so we thought maybe it was just car sickness. We got all checked in and in our room. Then they put the stuff on her head. It'll be there the whole time and we can't bathe her at all until it's off. The little monitor is wireless so the cords and monitor is in a little back pack. She really hates it but she's getting used to it.

Playing with her toys after it was all over

She hasn't been eating well for the last few days and we're just attributing it to the bladder infection and the antibiotic but then the threw up again this afternoon (a lot this time!) and we just couldn't ignore that. So now we think she has a tummy bug in addition to her bladder infection. UGH!

We didn't give her the seizure meds this morning since we were told that we'd most likely hold them while she was hooked up. Well by 1 this afternoon she was seizing again. Not big ones but the smaller jerky ones. She's had 6 of those since she's been here. All while sleeping. Let's hope they show something!! We're a little nervous about how the night will go but we will definitely keep you posted!!!

The girls being crafty

Gramme got the girls pot holder making kits for Christmas. The girls whipped them both out this week and Delaney helped spread them out all over! :)

Sisters...

Delaney is 16 months!

Delaney is 16 months! She is such an angel. She loves to clean up. She will even bring small trash cans to Julia (her chore is to take out trash). She is eating less than she was but trying new foods. She is using her sippy cup to drink lemonade or milk more, but she is still primarily breastfeeding. She uses some signs regularly now; please, want, sing (we think), and up. She will sometimes use more and bubbles. She is saying mom mom mom more but not with a lot of consistency. She loves music of any kind and has begun the toddler bending knees dance. She loves being outside and would still spend all day out there if we'd let her. She still takes two naps a day on most days lasting at least 2 hours each. She is still waking many many times a night. She likes playing with dolls, purses, books, and her little tykes slide. She finds her braces and glasses every morning and puts them in our lap so we put them on her. She loves getting new clothes and prances around in them. She has started to learn a new trick called "model". She has a super cute jean jacket that she will take off one shoulder, look at your all cute, and slip her arm out and then do it on the other side. It's way way cute. She did it a few times and then I gave it a name and now I'm trying to get her to do it on demand.

Dancing

New updates

We went to see Dr. McCartan today. We got in right away and all the staff was super nice. The nurse practitioner came in and went over all of our concerns, did a tone and reflex assessment, and watched her walk up and down the hallway. They found her to be hyptonic, good reflexes, upturn toe on the left, tires easily, wide gait, constant movement to regain balance, and toe gripping while not in braces. After doing the initial assessment the NP went and talked to Dr. McCartan about her findings. Around 15 minutes later they both came back in to talk to us. Dr. McCartan was so so so nice. She talked to us about bracing and asked what we thought about her suresteps. We both said that we thought they were great but didn't provide quite enough support. We discussed three different braces options with the doctor, NP, and orthotist. We eventually agreed on DAFO 3.5 which is an AFO. I talked about not wanting her in a restrictive brace until she's at least 2, so for now we'll go with this brace. In 6 months we will discuss braces again. She went down after the appointment to get casted for her new braces. We also discussed how quickly Delaney tires out during physical activity. They wrote a rx for her to have a reverse walker and then wanted us to have a walker assessment next door at PT during her session.

These people were the greatest people ever. They were so supportive, so amazing. They didn't question diagnoses or symptoms. They just listened and collaborated. It was so amazing.