Kylee's 2nd Birthday

Here is a video of Kylee from birth to her 2nd birthday. It is hard to imagine that it has been 2 years already. As I was putting this together I realized that I have missed almost a whole year of Kylee's life. We have pictures when she was first born and then nothing until she is almost one. Just goes to show how busy that first year was. It seems like just yesterday we took this little 4lb 11 oz little girl home in a horrible snow storm just so I could get home to my boys (Collin and my husband) and have my family all together again. I can remember having people come stand outside our window while I held her up in front of it so people could get a peek at her because we didn't want to expose her to any germs. Now she is out and about enjoying the world. She has changed so much in these 2 years. It was a roller coaster ride but it was all worth it. I have the most wonderful little girl who has taught me so much. HAPPY BIRTHDAY KYLEE!!!!
I hope you enjoy...

Photo and video editing at www.OneTrueMedia.com

GI Appointment

GI

We had Kylee's GI appointment with her new Dr today. His name is Dr Noe (he is a Children's Hospital Dr but he comes to Green Bay....a 45 minute drive is so much better then a 2 hour drive). I really liked him a lot. He explained things so well. He said he thinks that her stomach is not emptying because her brain is not telling it to. He said between the 1P36 and the infantile spasms her brain is just not working properly. If the brain can't tell the stomach to empty it won't. So as the day goes on the milk just builds up. That is why when he check her stomach in the morning it is empty but as the day goes on she will have 3 and 4 oz of milk in there and it would be 3 hours after she ate. He gave me lots of options. He said he would give me all the options and then we could discuss what would work well for us and what we would like to try. So our first option was to give her a antibiotic (arythamyacin..I probably spelt it wrong). He said they give it a little different then what they do when you are sick. He said it helps to empty the stomach. Our second option was to do a night feed. She will get a slow drip of milk for 10 hours from 9:00 at night to 7:00 in the morning. Then she will not get another feed until 11:00 am/then 2:00 pm and then 5:00 pm. We can also continue to offer whatever she wants orally which is never enough to not give her a supplemental feeding. Our 3rd option is a GJ tube which has some side affects that I am not to excited about and then our 4th option is to do IV feeds with the central line she has place in her chest for blood draws however those also have lots of negative side affects and is hard on the liver which one of the medicines she is already taking is also hard on the liver.....so.....we decided to try the night feeds for right now. He said to give it a good month and see how it goes. If that doesn't work then I want to try the medication. The 2 other options are at the bottom of my list....not anything I want. On a good note he was very excited with her height and weight gain. She was 20lbs 11 oz. We are going to start the over night feeds tomorrow night. I figure I probably won't sleep good the first few nights until I know that she won't throw up with them and I need the nurse to help me figure out how to set the rate and dose on the machine that will give her the feedings. My math skills aren't up to par lately :)

Kylee's Birthday Party

We are having Kylee's 2nd Birthday party on Sunday. I can't believe it has been 2 years already. That time went so fast. Grandma Janice and Grandpa Eddie bought her a really cute dress to wear and some new little ponytails to go with it. I will be sure to take lots of pictures so I can post them. I also have pictures of Kylee in her new stander that I want to post some time soon. Live has been busy...can't imagine why...I only have 3 kids under the age of 4.

Kylee's IFSP/Nuerology appointment

IFSP

We had Kylee's IFSP on Monday. It is amazing how much she couldn't do 6 months ago and you feel like she has always been able to do that. Such as rolling. She met some of her goals. I think 2 or 3 so I was very happy with that. We decided to up her Speech visits as that has always been an issue for us and we would like to work more on eating and get her vocal. We also talked about school a little during our IFSP and we talked about maybe doing a slow transition. Start maybe by taking her when the classroom is empty and then slowly working into a regular school day. I am just worried that she will get into a different setting and shut down and go right to sleep. Sounds like it will be a process to transition her but it is an exciting one. We also talked about doing a day where they get these special eye gear from the state and then we can invite anyone who works with Kylee on a regular basis to come over and you where this eye gear and do different activities so that you can understand what it is like to see the world thru Kylee's eyes. I think this will be a good thing to do. I think we all forget about her vision difficulty once in a while and then don't use as many vocal cues as we should.

Neurology

We had a good neurology appointment. I really learned alot during it. Our nurse Marsha also went along which was really nice because she could help me remember my questions. He said her EEG's are disorganized but he is not sure how much of that is from seizures and how much is from the gen tic deletions. He said as long as she keeps developing he is not going to worry too much about it. Because she is having a lot more seizures that I am noticing at home and she also had one while he was examining her he decided to increase both her seizure meds. He really seems very sure of himself that this will work. The seizures are a lot less both in frequency and in intensity but they are not gone yet. He also said he does not feel the throwing up is seizure related which brings me to my next topic.

New Formula

Kylee is now on her new formula and it seems to be helping a little. She is still throwing up but not as much as she was before. We have a GI appointment coming up in the next couple of weeks so we will have to discuss it during that appointment.

Kylee's Birthday

Kylee's 2nd Birthday is coming up on December 18th. I can't believe how fast those 2 years went. We have been working on her invites tonight. She is having a Strawberry Shortcake birthday. I also have been working on some fun stuff to post on her birthday. Hopefully I have them all finished by then......so you will have to stay tuned :)

Nursing

Kylee's Tuesday/Thursday nurse moved away (Julie). So at the moment we are interviewing for a Tuesday nurse. Marsh was willing to pick up Thursdays but she can not do Tuesdays. We have a nurse coming next week to interview but she said she couldn't do every Tuesday but could do one here and there. This is the worset part. Trying to find someone who works well with our family/takes good care of Kylee and that you can count on. There are not too many of those around. So if anyone who is reading this knows of some independent nurses in the area send them my way.

Hope everyone has a nice turkey day!!!!

Collin's Sister

Just wanted to share a short story about Collin. Today at school they had to color a picture of there family. His had mom, dad, Collin and then Kylee and Keegan. He told the teacher that the picture of Kylee was not his sister because his sister can't walk or stand on her legs. So he told the teacher he had to have another baby like Keegan to color. Well the teacher must of talked him into it being ok to leave Kylee as a big girl but he keeps telling me that is not Kylee because our Kylee can't walk. Right mom? Part of it breaks my heart but then the other part of me laughs. It is amazing how much he understands things and how it is just no big deal to him. That is all he knows. I remember last year when we brought her back from a hospital stay and he climbed up in the car by her and said oh honey you are still having seizures. I'm sorry honey.
One last story about him....Kylee got her Special Tomato chair tonight. It is a purple chair on wheels (I think I have a picture of it below). Well Collin has been wheeling her around the house all night in it and she is having so much fun. I wish I had a video camera so I could tape it and post it. It is so darn cute. She is so lucky to have such a caring big brother.

Pictures

Just thought I would post a few pictures.......

The Kids at Halloween

Saturday morning hang out watching cartoons

Kylee in her new Squiggles chair


Kylee listening to music...she loves the 80's tunes.

New Formula/School

New Formula

We have started Kylee on a new formula this week. It is called Peptamin Junior. It is a formula that is already predigested so it should be easier on her stomach. I guess it is not uncommon for kids to not handle the pediasure very well because it is so rich. So we are going to give that a try and see if it helps stop her from throwing up at night. It is some pricey stuff. It cost $6.50 for a 8oz can and she will need about 5 of those a day. Good thing we have insurance. I just hop it works. We also had to up her seizure medication because she was having a lot of them over the weekend. I just wish we could find a dosage and medication that would work well for her.

Eye Exam

We took Kylee to see her new eye Dr in Green Bay. I really liked him alot. He did a great job explaining things to me. He said he definitely agreed with the prescription of her glasses. We are going to do some further testing after the first of the year to see if she has cortical visual impairment and then also confirm what we learned from the Janesville school for the blind as far as what distance she sees best at and what size text and that kind of stuff. We have to go to Madison for this so that is why we are waiting until after the first of the year.

Stander

We are going to be getting Kylee's stander tomorrow night. Can't wait to see standing in it. I will be sure to post pictures soon with her in it.

School

Last week we had a meeting with Kylee's birth to 3 coordinator and she had stated that she had run into someone from the school district that said what can you tell me about this little girl who will be turning 2 in December (the school gets a listing of children with disabilities that might be coming into there school district but they don't know there name or much else about them). So April filled her in on Miss Kylee and said that I had also been asking about school and what happens once Kylee turns 3. Well we found out that they are willing to take Kylee into the school district in September instead of waiting until her 3rd birthday. So she told us to think about it and then once we decided to let them know so they can get going on the process. We are leaning towards letting her go in September because I can't think of any negatives to letting her go early. It is just in the morning. The bus would pick her up and drop her off and she would receive all therapies at the school....So anyone out there that has already gone thru the school process with a disabled child let me know what you think...I would love to hear about both the positive and negatives.

Thank You

Thought I would post a note on here saying thank you to Shelia for the wonderful card. It really made my day. I'm happy you enjoy reading about our princess.

**For those of you who don't know too much about the blog pages (I'm still learning) there is a comment section on the bottom of each of my post. You can just click on it and write anything you want. Also feel free to share the website with anyone you would like.

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 :)