Equipment

Equipment

We got Kylee new squiggles chair on Monday and I love it. It is so much smaller then what I thought it was going to be. It will be so nice to take it along to places so that she can sit at a regular table with us and everyone can be comfortable. It is no larger then a booster seat when you remove the legs on it. She also sits so well in it.
The stander is still on back order. Our insurance ended up not paying for it which I am not real happy about. Long story short I learned a good leason from this. I will never order another piece of equipment until I have the letter in my own hands. I went off what the vendor told me and he said he called my insurance company and they approved it but when it came down to it they didn't approve it. He just called to let them know he was ordering. So I am very happy we set aside that $1054.00 from our family support money so that we can cover the cost of it. Otherwise Jason and I would have to pay for it out of our own pocket.

Kylee's Throwing Up

Kylee has been sick the last couple of weeks. She started with a bad cold which she got over on her own (first time ever) but now she is back to throwing up on a daily basis but now it is twice a day instead of just once a day. She has been throwing up after her noon feed and then again after her supper feed. We thought that the increase in her seizure medication was working because she had not thrown up since we increased it but now she is throwing up more then every. I have some calls in to some of her doctors to see if we can get this figured out. I don't have any time to take off of work because I was off for 4 months with Keegan (almost 3 months before he was born and then 6 weeks after) so I can't take any trips to Milwaukee to Children's Hospital. I am hoping that the Dr's down there can work with the Dr's up here to get things figured out.

Passing of 1P36 family member

One of our 1P36 families has lost there child. Her name was Chloe and they were from Texas. She was one years old. She actually went into the hospital on her first birthday and passed away a few weeks after that. The family showed such great strength during this difficult time and I thank them for showing me that strength. I can only hope to learn from them. They stated that Chloe was only here for a short time but had taught them so much. She is now in heaven and I am sure she is running and laughing and smiling. Her family will meet her again some day in a place where there are no disabilities or pain. I saw the below poem on Alayna's site. I couldn't help but shed a tear....I thought I would share it.

Heaven’s Very Special Child

A meeting was held quite far from earth

“It’s time again for another birth,”

Said the angels to the Lord above

This special child will need much love.

Her progress may be very slow

Accomplishments she may not show

And she’ll require extra care

From the folks she meets down there.

She may not run, or laugh or play.

Her thoughts may seem quite far away.

In many ways she won’t adapt

And she’ll be known as handicapped.

So let’s be careful where she’s sent,

We want her life to be content.

Please Lord find the person who

Will do this special job for you.

They may not realize straight away

The learning role they’re asked to play,

But with this child sent from above

Comes stronger faith and richer love,

And soon they’ll know the privilege given

Their precious child so meek and mild

Is HEAVEN’S VERY SPECIAL CHILD.

Kylee's EEG Results

We got Kylee's EEG results back on Monday and he said it was very active and that he wanted to up her seizure medication a little quicker then normal. We are going to up her every 3 days for the next 12 days. Then we have to have labwork done and then he will decide where to go after that. We started increasing her meds on Tuesday and she has not vomited. Maybe that will take care of the issue. I do have a few questions for him like if the EEG is active all the time or if it was more active at a certain time of day and I would also like to know what the EEG looked like around 8:00 at night. When they called I had a horrible headache (I was starting with the cold that it seems like everyone has) so I couldn't think to clearly.

Nursing
Kylee's new nurse Brian started on Friday. He is an RN and will be our case manager. He seems like a really nice guy so I am hoping things work out. He is about our age and has a son who is Kylee's age. We now have Marsha, Julie and Brian for nurses. Each one has there own "personality". Marsha calls herself nurse bootcamp. She works Kylee hard. She does lots of therapy with her. Julie she is the loving mother. She does her therapy with her but she loves to hug and snuggle with Kylee. The two nurses are a nice combination for Kylee. I can't wait to see what Brian will bring to the mix.

Equipment
Kylee's stander got ordered on Wednesday. They called and said our insurance said they would cover it but the state will not. The company we are ordering it from said if my insurance pays all but 15% then they will not bill us anything. If they take a larger cut then that then they will have to bill us and then we will us some of our family support money to pay for the difference. They also called and said Kylee's squiggles seating system is in and they are bringing it out on Monday morning. I can't wait to see it and give it a try. Kylee has started sitting in her Bumbo chair really good this last week. She can sit it in for about 10-20 minutes so I can't wait to see how she does in this new chair (if you want to see want the squiggles chair looks like you can see it in my last posting).

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 :)