Eating/New Equipment and signing

Eating
We are so excited about Kylee's eating. On Sunday she ate a whole container of Pears and a half of container of sweet potatoes. This is the most she has eaten in a long time and she also seemed to enjoy it. So we are now making sure that she eats "solids" at least twice a day. The nurses are going to feed her once and then I will feed her supper. Hopefully her intake will increase.

Equipment
Our social worker from the county called and they are ordering Kylee's equipment. We are getting a Special Tomato, a Squiggles seating system and a stander. If our insurance ends up paying for the stander then we can purchase something else which we are thinking about purchasing a swing system for our basement. Kylee loves to swing in a blanket and it is really good for her vestibular system. That is about the only time I every really see her smile is when we are swinging her in the blanket.

Signing
We also think that she signed more the other day. We have been making her sign the word more when we do something with her in order for us to do more of it (such as swinging or reading a book or eating). The other day we were swinging her and she brought her hands together as if she was signing more. So then we would swing her some more. Then we would stop and then she did it again so then we started swinging her again. It is a start. So now I want to get some more information on signing to see if we can work on some other words.

Special Tomato chair

Squiggles feeding system (kind of hard to see but she sits in it with her legs straight out)

GREAT News!!!!!

I just got a call from our nurse Marsha and Kylee has been approved for nursing until April 30th. I am so excited. We have never been approved for that long of a time. Usually we only get approved for 3 months and it is usually backed dated so by the time we get it we only have a month before we have to send the paper work in again. Now we don't have to worry about it again until spring. We are not sure if it got approved for so long because our case manager with the special needs clinic in Milwaukee called them to tell them we need them thru the winter because of how sick Kylee usually gets or if they just decided to finally cut us a break. I feel so much better going back to work on September 30th knowing that I have the nurses here to take care of Kylee. They are the 2 best nurses in the world (Marsha and Julie). They spend so much time with her and do so many fun things with her. I am so happy I could cry.
We also got Kylee's EEG stuff taken off today and she is happy about that. She was rolling around on the floor with the biggest smile on her face. I also got her to sit up on her own for about 30 seconds. Long enough for me to go grab the camera and take a few pictures. So many good things....I have a huge smile on my face today :)

EEG

Before EEG

After being hooked up to EEG

So we took Kylee in today and got her hooked up for her 48 hour EEG. She did really good with getting hooked up however once we got home and she found out she couldn't roll around she was not to happy about that. Not sure how well it will all stay on for the next 48 hours but she did have one of her spells tonight around 7:30 so I am happy that will be on there. Then we will know if the vomiting is from a seizure or something else. Tonight she was sleeping...then she jerked like she was shocked and then she opened her eyes up with a scared look and then came the endless vomiting. So hopefully we can get this figured out and get our princess back on track.

Our New Family

Kylee checking out Keegan

It is hard work being a big brother
The New Family

Here is a pictures of the new family (please forgive me for how we look...it was just a few hours after Keegan was born). Keegan was born Aug 19th. He weighed 8lbs 7oz and was 20 and 1/2 inches long. We are all adjusting well. Kylee had some issues when we first got home. When Keegan would cry she would just start shaking all over like she was not sure what was going on. Now it is all old news to her.

Kylee has come up for family support funding with our county so they are going to be ordering her a stander no matter what. If our insurance ends up paying for it they will reimburse the county. So sounds like we will be getting it soon. We had to settle for a not so nice color...John Deer Green. They only come in one color for each size and that is the color for her size. No pink for our princess.

Kylee is going tomorrow to get set up for her 48 hour EEG. I am so happy they decided to do this. I think it will show a lot more then a 20 minute one. I hope that they can figure out if the vomiting is from the seizures. On a good note Kylee has not vomited since we have increased her seizure med so I am hoping that is all she needed.

No word on nursing yet. We are hoping to have them back before I have to go back to work on Sept 30th. Plus we miss them...they are so wonderful.
Kylee sat up for the first time last Friday. It was short and sweet. Only about 5-10 seconds but it is a step forward. I cried so hard and Collin had a hard time understanding that they were tears of joy. So we have been practicing everyday and hopefully we can increase that time. Kylee steps :)