We are home

Back Home

Well we got home from the hospital on Monday. I have never been so happy to be home and get back to work (well I maybe could do with out that but it is a part of life) and back to a routine. Kylee has been doing really good on her new medicine. They have taken her off 2 of her old medicines and down on another one. It is amazing how much she has changed. She is much more verbal now and lets you know when she don't like something. One night this week she started crying and Collin didn't know what to do. He kept rubbing her and saying it is ok. Then he said mom I think Kylee misses dad I think he needs to come home from work. It was so cute because he just new that she doesn't usually cry and he didn't know what to do. I am hoping that this new medicine continues to work. The past week has been a roller coaster. I had to work really hard to get Kylee to Milwaukee and once we got there and got the diagnosis of Lennox Gastaut Syndrome it just broke my heart. As much as I wanted her to be at Milwaukee I just didn't want to hear those words. All I could do was cry. I felt like all my hopes and dreams for her were just crushed. I so badly just want her to be a "normal" child. I feel like with every new diagnosis she gets it pushes that hope further and further away. It is just so hard to accept it. You would think after 2 years I would have accepted that she will not be like other kids but I guess I wouldn't be a parent if I didn't have high hopes for her. Now seeing how well she is doing on the medicine part of me wants to get excited but the other part of me doesn't want to get my hopes up. I guess all I can do is take one day at a time and enjoy each minute I have with her. She is truly a blessing and I can not imagine live without her. She has taught me so much and made me a much stronger person.

Collin and Ronald McDonald House

Ok...On a much lighter note Collin got to go to the Ronald McDonald house for the first time and he just loved it. He was so excited to get to play video games for free and he got to go to the toy closet and pick out any toy he wanted. While we were there he saw some boys bring in bags and bags of pop tabs. He asked what they were for and I explained to him that they get money for those and that lets people like us be able to stay there while they have family at the hospital. So now Collin wants to start saving pop tabs so other people and us can stay there. So if anyone has any pop tabs I would be more then happy to take them off your hands. We will drop them off at the house with our next trip to Milwaukee. Sounds like we are going to have to go there every few months now that we have switched nerologists.

ABR and MRI

Kylee is scheduled to have a ABR (a sedated hearing test) and an MRI on monday at Thedaclark. Kylee has failed a few hearing test but we are not sure if she fails them because she can't hear or because she don't like to have her ears touched (they have to put this little machine in her ear like a ear thermomitor). So we decided to have the sedated ABR done so we can know for sure where her hearing is at because speech is so important right now. We decied that since she was going to be sedated for that then we would do the MRI also. Some of the other 1P36 kids have teethered cords and other spinal issues so we just want to make sure she is ok as she has never had one done before. We are also starting back up with therapy next week. With being in the hospital for a week she didn't have any therapy and has gotten kind of weak.

Thank You

I would just like to say THANK YOU to everyone for all your help and kind words during Kylee's recent hospital stay. It made things alot easier being so far away knowing that my 2 boys were being well taken care of. Also, thank you to my mom for being by my side the whole time we were at the hospital. I can not thank you enough for that.

Lennox-Gastaut Syndrome

Lennox-Gastaut Syndrome Diagnosis

Just wanted to take a quick moment to let everyone know that Kylee was back in the hospital on Monday and we are still here. Sounds like we are going to be here for awhile. We are at Children's Hospital in Milwaukee (about 2 hours from home). They ran lots of test on her and have found that she has Lennox-Gastaut Syndrome. I don't know a whole lot about it so it will be a learning process. Right now they are trying a new medication on her but because she has failed so many other medication she only has a 5% chance that this one will work. They said if that doesn't work there is a low carb high fat diet we can try however they would want us to leave her tube feed on that only eat a little by mouth for taste. Then there are a few surgeries also and 2 new medications that should be out so. So right now we are on a trial and error process.
I really miss my boys (Jason, Collin and Keegan) and can't wait to see them this weekend. Hopefully we will be out of here soon. Not have a lot of time to write as Kylee has to have someone with her 24/7 so I just got out for a quick break. I'll try to post again soon.

Kylee's Hospital Visit

Kylee's Hospital Stay

Well over the weekend we ended up having to take Kylee to the ER. On Friday during OT we were swinging her in a blanket. Something we do every OT visit and she loves it. For whatever reason she decided to have a seizure during it and it was a different seizure then we have ever seen before. It lasted about 20 minutes and she became really sleepy. Our poor therapist was so nervous about it she called to check on us. She had the one on Friday, one on Saturday and then four on Sunday before we decided to take her in. Jason and I took her to Thedaclark. The Dr in the ER didn't know what to do. He said she looked ok to him and her EEG we had done on Tuesday looked good compared to her other EEG's. I said whatever she is doing now is not what she was doing on Tuesday. So he called Dr Edgar (our neurologist) and he said our options were to either increase the meds she is on or go inpatient for a EEG and see what it says. Well I didn't just want to increase her meds without knowing what was going on so we went inpatient. So happy I made that decision. She had a video recorded EEG and they found out she is having a different type of seizures then she was having before and they needed to be treated differently then her infantile spasms. So we now have another seizure med added to the list. We had a hard time getting the medication. We stopped on our way home last night and none of the 3 pharmacies where we live had it. Which the Dr at the hospital specifically asked to speak with the pharmacist so they were sure to have it for us. So we were unable to get it until late this morning so we were unable to do lab draws today. Many Dr are not happy about that and neither are we. Good lesson learned. I have posted a few pictures of her all wrapped up for the EEG. One thing about Children's Hospital (either at Neenah or Milwaukee) is the staff never forgets you. We haven't been inpatient at Neenah for over a year and they all remembered us. I also met a nurse who has 2 special needs children and she was able to give me lots of information and an organization in the fox valley for children with siblings who have special needs. They get to do lots of fun stuff and talk about how they feel about having a sibling with special needs. When we called to say we were staying Collin was very concerned and he said if both mom and dad are staying grandma then it is bad. They understand way more then you think they do. Speaking of Jason and I both staying. We had to sleep on a pullout sofa that was no larger then a single bed. So funny.......I think that is all the information about our stay.

Kylee's 2nd Birthday

Sitting

We have been working really hard on independent sitting. She is getting a lot better. She can sit pretty good if we stick the boppy pillow around her. The below picture was taken on Sunday when she was having lots of seizures so maybe if we can get them under control she will do better. If she can sit that good when she is having them....maybe there is hope. I feel like we have been working on sitting forever.

Kylee's First Haircut

Last week we had Kylee's first hair cut. A lady by the name of Lori who works with my sister came to our house and cut her hair. She did a wonderful job. She was so patient with her. When Kylee would start to move around she would just say ok. I will stop and wait until you are ready. I am so thankful she was so good with her. We saved a big chunk of her curls. It was sad to see them go but alot easier doing the hair in the morning.

Just a few MSC pictures:

Kylee and dad Christmas morning

Kylee sleeping in her stander during PT



Tomorrow

Tomorrow we are going for Kylee's 2 year old check up and lab work. It should be an interesting visit. I have lots of questions. We are also going to start her tomorrow on half Nestle Good Start and half Peptamin Jr to see if that helps with the throwing up. I had found a story about a little girl who was younger then Kylee but weighed the same and had the same tube feeding schedule as Kylee and was also throwing up once a day just like Kylee. They switched to 1/2 of the formula they used when the little girl was little and 1/2 Peptamin Jr and have gone 4 weeks with no vomiting. I am hoping for the same.

GI/EEG and Teething

EEG

Well the holidays are over....It went so fast. We have a busy week this week. Kylee goes tomorrow for an EEG. She has reached her increased levels on the medication so we have to see if it has helped. I currently have a call in to neurology as she is still having seizures. They are less intense and less frequently but still having them.

GI

Thursday she is having an upper GI to check to make sure there is nothing going on inside that is causing her to throw up (such as her feeding tube blocking something). The throwing up has also decreased since we have started her on the Peptamin Jr but it is still happening.When we took her in last week for labs I had them do a weight check and she is down about a pound. Not sure why but the only thing I can think of is the seizures must be eating up lots of calories. I have heard they do that. We have her 2 year old check up next week so I am sure we will be talking about that along with a long list of other things.

Teething

This past week she has been really tired and has been crying (which she never does) so I was concerned about here.She also has stopped eating baby food. Well I see she is getting a tooth so I think that is what is going on. She was so tired today that she fell asleep in the stander during PT. I took pictures so I will have to post them. I have lots of pictures I want to post just have to find the time.

Hotel

We went to a hotel for New Years Eve and I was so excited because I thought we would be able to take Kylee swimming for the first time however the water was way too cold for her. That seems to be our problem just about everywhere we go. We have heard that there is a hotel in Waupaca (about 20 mins from where we live) that has a heated pool. You can pay to just go there for the day so we want to do that some time soon. I think she would love swimming as she loves her bathes.

Hair

We have been having major issues with Kylee's hair. She loves to roll so it gets all tangled in the back and she hates to have her hair combed or have pretties put in. We are thinking about getting her hair cut short (a little pixie cut). I am going to talk to my hair lady when I go in next week and see if she thinks she could handle it. It has to be the right person because they will need to be very patient with her. It is will be sad to cut it because it is so long (to the middle of her back) and has some curls but I think it would make live easier for all of us if we cut it.