Thankful

I'm 2!

Kaitlyn is doing really well. We feel so lucky that she hasn't gotten any colds or viruses lately (knock on wood!). She has had a few UTIs and an ear infection over the past few months but those are minor compared to being admitted to the hospital.

She has started to have some enamel issues with her teeth, possibly enamel hypoplasia, and we are going to see a pediatric dentist that specializes in children with special needs. Since Kaitlyn can't have any liquids in her mouth because she would aspirate it (breathe it in and choke), it is extremely important that we take her to the right type of dentist. 

She loves to watch Cole play

Kaitlyn has also had some neurological episodes where she gets a little disoriented. The episodes only last for about 15-30 seconds but it is concerning none the less. It isn't a seizure... yet. It is very common for seizures to occur in children with NP, especially as their disease progresses.  Most of the time in children with NPA, seizures are not the typical tonic-clonic, convulsing type of seizures but are more quiet. Their bodies might get rigid and they would be disoriented. Most do not lose consciousness or stop breathing.

Of course every child is different so we are keeping a close eye on Kaitlyn for any seizure-like activity. Our hospice nurse, Stephanie, has been keeping an eye on her and we have some medication here at the house now in case Kaitlyn were to have a true seizure that doesn't stop.

Her serious look

Scary stuff but she is doing great otherwise. She stills loves to have books read to her, listen to music, play with toys and puppets and watch videos. She spends most of her time on the memory foam mat or in her chair. We try to have "fish time" every day too. Her aquarium is now filled with lots of bright colored fish for her to enjoy.

Puppets!

Kaitlyn and Cole watching the fish with Cousin Dane and Aunt Jess

Fish Time

Cousin Dane helps entertain too!

Reading with Cousin Makayla

Cole is also a source of entertainment for Kaitlyn, although he is a little too interested in her face and hair at times. :-) It is so sweet to watch them look at each other and make little noises back and forth. I am so lucky to be able to be home with them every day.

Talking to each other

Cole trying to get Kaitlyn

We do have good days and bad days. It seems like there are less bad days lately. My mom, Janet/Gigi, has moved from Richmond, VA to Charlotte, NC to help out more. It is a blessing to have her here to help. I'm not quite sure how I was managing both Kaitlyn and Cole every day! Now there are small moments where I can relax and not feel so overwhelmed.

Gigi helping out with Cole

Kaitlyn loves to watch laundry being folded

Good News- Kaitlyn also got approved for CAP-C! It's a program here in NC that assists in coordinating and paying for home health nursing services. We have been on waiting lists for CAP-C for almost a year. We will be receiving 20 hours a week of home nursing services as well as 720 hours (about 13 hours a week) of respite care. Kaitlyn also automatically receives Medicaid as a secondary insurance (Imaging a huge church choir singing... Alleluia!). This will help us incredibly!

We have so many things to be thankful for right now, especially our sweet girl Kaitlyn and her little brother Cole.

Precious time

Sweet siblings

Talking to her new cousin, Daniel