School

School

Jason and I went on Tuesday to visit Kylee's classroom and get an idea of how a day will go for Kylee once she starts school. Everyone was so wonderful. Her teacher is very young. I think she must be fresh out of college and seems to have lots of energy and really loves what she does. They let me know how they would adapt different things for Kylee so she can be part of the class such as putting her in a tumble form chair ( a special chair that offers lots of support) when they do story time. This way she can be on the floor with the other kids. We got to see a little boy in gym who has similar needs to Kylee and see how they adapt gym for him. The kids were riding on little scooters and this little boys aid was on the scooter holding the little boy so he could be part of gym class like all the other kids. I was just very happy with everything I saw. We have decided since it is so close to the end of the year that we will start with the paperwork in September and then have Kylee start school towards the end of September or early October.

Sign Language

I took a sign language class on Wednesday and I feel like it was set up just for me. They taught us how to sign You are My Sunshine which is our favorite song. They also taught us how to sign the book Brown Bear Brown Bear What Do You See which is a book that her therapy people made especially for her. They mad the print larger and made it into a touch and feel book. So with that being said I loved the class. It was well worth the time. I'm far from being a pro but I got a good base to start with.

Song

One of the parents on our 1P36 support group forwarded a song written by Collin Raye about his grand-daughter. I can't stop listening to the song and it gives me goose bumps every time I listen to it. I thought I would share it with you. http://www.mandjshow.com/videos/country-star-collin-raye/. Get the tissues ready.

The Week

Other then that nothing to new or exciting to report for the week. Kylee has an ear infection but she has tubes in her ears so it is just got yucky stuff coming out and when I look in them I can see liquid just bubbling (I like to play doctor). I can't go to the Dr anymore and have them listen to my lungs with out laughing a little because I always practice taking Collins blood pressure and listening to his lungs and I will say take a deep breathe and then when I am done listening to him then he listens to me and I can't help but laugh and he always says well my mom is a doctor....boy will he be disappointment when he gets older and realizes I'm not a doctor and he was my guinie pig. Ok..so back to the week. Ear infection and sleeping issues. She has been up all night. I have no idea when she sleeps. I put her to bed at 9:00 awake. When I get up at midnight to put milk in her bag she is awake. When Jason gets home from work she is awake. When I get up at 4:00 to feed Keegan she is awake and when I get up at 6:00 for work she is awake. I think we are going to have to put her on some melatonin to help with the sleeping. So if any other 1P36 mom's are reading this and know where I can buy it at let me know otherwise I will have to give her Dr a call. We are heading up to the camper on Friday for our first time this year. It is opening weekend of trout fishing so we are heading to "fish camp". It will be interesting with 3 kids but some good family time.

Does She Know How Much I Love Her?

Does She Know How Much I Love Her

This is a question I ask myself often. Will she ever know how much I love her. She never really seemed to respond to us holding her or loving her but this week things have changed. She gets the biggest smile on her face when you pick her up to hold her and once in a while she gives you a giggle. We also have been playing this little game where I give her a kiss on her cheek and she will start laughing and then turn her face and I give her a kiss on that side and we keep going back and forth. Even if she can't always express how much she loves us there should never be a doubt in our mind that she knows how much we love her. We have been enjoying this week so much with her. She is just so bright eyed and happy. Her "toothy"' smile will be engraved in my memory forever. I love putting her to bed at night and having her turn to me and give me that big "toothy" smile. It is just makes it a great way to end the day.

Neurology

Well neurology had a cancellation on Monday so we made the trip to Milwaukee (as much as I was not ready to go back there it had to be done). Grandpa Eddie came along for the ride. It makes it seem so much shorter if you have some else with you. We had an hour and a half appointment and I really learned alot from the appointment. They have decided to increase her Depakote just 1 ml at night. She thinks that will get rid of the few seizures we are seeing. She also asked what her sleep pattern was like. I said she usually goes to bed around 8:30 pm or 9:00 pm and it sometimes takes her an hour to get to sleep. Then she usually sleeps until about 2:00 am and then will stay up until about 4:00 am or 5:00 am and then will go back to sleep until around 10:00 am. She said because she is not getting a full 8 or 10 hours of sleep this can increase her seizure activity. I had never thought about that. I know we have had many conversations on the 1P36 support group about sleep and her sleep pattern is very similar to many of the other 1P36 kids. She then said if we felt she was having more seizures the day after she has broken up sleep that we may want to start her on melatonin. This is another topic we have discussed on our support group. Some families feel it helps and others do not. So right now we are just watching her and will see if we notice she has more seizures on those days. If she does we may give it a try. Other then that everyone was very happy with how well she is doing and how great she looks after everything she has been thru. I always hate making the trip to Milwaukee but it is always worth it.

School

We had a meeting with the school psycologist last Friday. Didn't really learn a whole lot from it but it was still nice to get to meet her and talk about things. Everything I would ask I would get a response of "if it is determined that Kylee" needs vision services, a nurse at school, a one on one aide....everything was if it is determined. Guess I just need to be more patient with getting my questions answered and taking one step at a time. Now on Tuesday I will be going to the school and sitting in on a class and see how things work. She said there is no one in the class right now that has as many "needs" as Kylee and no one with a Kid Kart or wheel chair so the classroom is set up a little different but at least I will get the idea of how the class runs. They are also moving the early childhood class room to the senior high school next year instead of at Lincoln due to the fact they are running out of room at Lincoln. She said the early childhood kids will have no interaction with the teenagers other then kids that may sit in on a class or help out because they are interested in going to school for a field related to the early childhood class. I also got a name of a family that lives about 1/2 a mile from where we live who has a child that just moved into kindergarten but has many similar needs as Kylee as far as vision and mobility. I am going to be contacting them to see if they can answer some of my questions about school.

Sign Language

On Wednesday the La Leche group (I think that is what they are called) is offering a free sign language class for 2 hours. You are suppose to learn 75 signs. I figured I would give it a try. I have all kinds of things at home to help with learning sign language but thought if I could see someone do it maybe I would catch on a little better. I also thought maybe I would be able to meet up with other families in the area who may have children that are hearing impaired or have difficulty with speech.

Appointments and More Appointments

GI Appointment

We had Kylee's GI appointment on Friday and it went very well. She has gained 2 pounds since she has been discharged from the hospital in March. All her tests for C-diff, parasites and rotavirus came back negative so that left the doctor wondering what is causing this major case of diarrhea. So he decided he wanted to run some more test and check for a lactose intolerance and protein intolerance along with some other things. I asked him about reducing her to a 22 or 20 hour feed and giving her tummy a break and then increasing the amount she gets during those hours so she is sure to get enough "food". He didn't think that was a good idea because he thought that would increase her diarrhea. Well....on Saturday morning her machine went off nice and early to let me know she was out of milk. I got a new bag of milk and set in on the dresser and decided to go to the bathroom. When I came out I forgot what I had been doing and went right back to bed. She ended up having about a 2 hour time span with no food. All day Saturday she had 2 diapers. So I thought hmm...that seemed to work good so I have tried it for a few days now and it has been working great. Each day she has only had 1 or 2 diapers (#2 diapers) and I have been giving her some pedialyte to make up for the milk she is not getting during the span. So with all that being said I playing Dr right now and adjusting her rate so we can increase her milk she gets in that 22 hours and continuing to give her that 2 hour break. If it works that is all that matters. Then I will just call GI and tell him I have it all figured out. That is what I like about her GI is he trust me and lets me run the show :) We also got the OK to give Kylee food by mouth again so we are slowly introducing that to her. She had a few days that I have never seen her eat so well and then other days where she didn't want to open her mouth at all. Just have to keep trying.

Cardiology

We saw cardiology today and that went really well. We do not need to come back until September unless we have issues. She said our issues would be her hands and feet turning cold and blue, puffy face and respiratory issues. She said those would all be signs her heart is not functioning properly. All those signs were things we saw when she was hospitalized in February just didn't know what they meant. She also told me that with non-compaction cardiomyopathy she could go into heart failure. She said it could be today, tomorrow or 40 years from now. She said if that happens she will have to send us to a different cardiologist in Milwaukee who handles that situation more then she does. Kylee has also had a very dry barky cough for about a month and she thinks it may be from her heart medication so they are switching her to something else. They also gave us a website to go to so we can check any medicine we give her to make sure it is not something we shouldn't be giving her because of her heart condition. She told us her cardiac output is 60% which is good. Overall a very good appointment. They also said she is still not on the growth chart. I was hoping with that 2 pound weight gain she would be at least one or two percent. Oh well...as long as she is healthy.

Neurology

So...Milwaukee called and said Kylee's neurologist has no openings until December 2009. Crazy. I can't believe she is booking out almost a whole year but I guess thats what happens when you find a good Dr. They said they would put us on a list for cancellations (not sure why anyone would cancel when they book out that far). They called last week and said they can get us in on Monday April 20th so as much as I don't want to go back to Milwaukee right now I know we have to. So we will be making the trip on Monday. She has been having a few seizures a day but they are so small and last only seconds. She mainly just curls her fingers up or puts her arms straight out. Something that you wouldn't know was a seizure unless someone pointed it out to you. She has been such a different girls since being on the medicine for her seizures that I continue to hope that it works. Therapy is so happy with how well she is doing considering the rough couple of months she has had. At least we know what our options are if the medicine doesn't work and our next step would be a special diet for her. Our last option is surgery.

Nursing

Well our nursing information has come back from the state and Kylee has been approved for nursing care until April 2010. That is a whole year. We are so excited about it because this is the first time she has been approved for a whole year and we didn't have to fight them on it. EXCITING!!!! So we should have our 2 new nurses starting soon and one of them said she would do 1 night a week which will be nice so that the 2 boys and I can get some time to do things together that Kylee's can't do or doesn't enjoy doing.

School

Well Friday is our big appointment with the school psychologist. I have a huge list of questions and reasons why Kylee should have a one on one aide and/or nursing care during school. I've been told to come prepared but not defensive. That New London school district usually works very well with parents but that I need to know Kylee's rights. It all sounds like a scary process but something that has to be done.

GI Issues

GI

I have yet again spent another Friday on the phone with GI. The nurse said oh I missed you. I guess at least we can have a sense of humor about it. On Thursday Kylee had a total of 12 #2 diapers which means her poor hinder is worse then ever. They decided to do some more test on her for the c-diff again, parasites and rota virus. Then we have an appointment on Friday to discuss everything. Our GI Dr is a Children's Hospital Dr but he comes to Green Bay (about 45 minutes for where we live) so that saves us a 2 hour drive. I'm not sure what his plans are if all those test came back negative. I was hoping on Friday we would be able to start to increase her feeds so that she could get a 4 hour a day break but I don't think that will be happening as long as the #2 diapers continue. I am trying a new homemade cream on her. It is made of Benadryl, Malox, zinc oxide (which if anyone knows where I can buy pure zinc oxide let me know the closest I can get is desitin) and then Aveno oatmeal bath. You mix it all together and make a paste and put it on. I am to the point I will try just about anything. With all the diapers we are very concerned about dehydration so we are working on keeping her hydrated and not focusing on the calories so much right now. Anything to stay out of the hospital

School

Well we are starting the process of getting Kylee ready for school. We have a lot of work to get done before the end of the school year as Kylee will be starting school in September. Our first step is meeting with the school physcologist and we will be doing that on the 17th. The school has decided to let you start early as she does not turn 3 until December and we decided to go ahead with it because we think it may take Kylee a while to adjust and not shut down (fall asleep) during school. She will also see therapist at school and we will also get to stay with B-3 until she turns 3 so I am hoping to make lots of progress during that time. My only worry is all the germs but I guess if she starts in September it will slowly introduce her to germs before the big cold and flu season hits.

The Week Ahead

So the week ahead is Speech on Monday. A new nurse on Tuesday. Our service coordinator on Wednesday. GI on Friday and a wedding on Saturday and then the Easter Bunny. Busy week as always. I will be sure to post after her GI appointment. Can't wait to see how much she weighs.

Our Artist

Our Artist

Kylee has been feeling really good lately so we have been doing lots of fun things. We colored with crayons over the weekend and then today Kylee and our nurse painted. Just had to post a few pictures to share.

Here is Collin and Kylee coloring together. What a nice big brother.

Here is Kylee and our nurse Marsha getting ready to paint.

Here is Kylee painting she held onto the paint brush all by herself.

Here is another picture of her painting.

Here is the final project. So cute for her first picture.

Here is a picture of the little room. It is side ways but you get the point. She lays on the piece of wood with all these "items" hanging above her. You never change anything in the little room. This way she always knows where everything is. Then there are rules like she can't stay in for more then 45 minutes/you have to take her shoes off and she can't get upset or fall asleep in there. It will be interesting to see how she does in there. I am happy we got to try it out.

Loss of Emma

I was very saddened to read that we have lost yet another 1P36 family member. Emma died during her sleep and my prayers and support go out to her family. This bring up a whole bunch of emotions that I have had to deal with lately. I have always said that I don't know how families can be so strong during such a difficult time. Then this past winter when Kylee was so sick I realized how God gives you the strength when you need it. When we were given the news that she was being transferred to ICU I realized how bad she was then they asked me if we wanted her resuscitated if something were to happen on the ride to Milwaukee. Then I really realized how bad things were. Reality then set in and God gave me the strength to hold my baby girl and tell her that if she was tired of fighting it was ok as I sang her favorite song you are my sunshine. Ever since that time I have thought a lot about death and dying and what would I do if I would wake up one morning and go in by her and she would be gone. How would I keep myself together for the boys. Then I seen the e-mail about Emma and it brought all these emotions back again. It just makes me realize how I do need to enjoy each moment..not think about tomorrow and worry about it when and if it happens.

Please keep Emma's family in your prayers and may God give them the strength to get thru this difficult time.