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.