SPED Training Day

We had another training session today. Our teacher said we are doing a great job. She could tell we have been working with him a lot! He is making great progress in his rolling, lifting his feet, and vocalizations. GO JAYEN!!
We are continuing to work on these skills and many more...

• his left side is still underdeveloped. We need to continue to work on holding toys and rolling with this side
• vocalizing - when we play with him we should pause after an activity and ask him if he wants more then wait for a vocalization before continuing.
• We just started working and putting weight on his legs. She suggested letting him straddle our leg and slowly help him get to a stand.

We see lots of progress and can't believe how much he is growing every day. We are still trying to figure him out again. Everything has changed; his sleeping pattern, his eating pattern, etc. It is almost like having a new baby again!

Blood Levels

I just got a call from the doctor's office. Jayen's potassium levels were VERY high. The doctor was a little hesitant to say it, but did say that it is something that could be fatal. We immediately left the house and headed for the doctor's office. The wanted to take his blood again, but this time from a vein. They were searching and searching and finally decided to take it from his scalp. Once again he was poked for more blood. By the time we got packed up and back to our house, I think the boys caught some kind of bug. Just as we were walking in the house Jayen started puking. A few minutes later Dalan was projectile pooping. The two of them continued this cycle for a few hours. Mommy and daddy gave them extra love and lots of fluids. The next day they both seemed to be fine.
The doctor called back and said that his potassium levels checked out OK this time. They think it could have been caused by the phlebotomist squeezing his finger too hard. It actually breaks open some of the cells and causes them to release too much potassium. So big scare but all is well again!

I have toes! Who knew?

Jayen was playing in his crib this morning waiting for someone to come get him when he finally realized he had toes. These crazy things have been there the whole time. We have been working on getting him to find his toes for weeks now. He was rolling around just holding onto them. He is making so much progress!

We bought 9 balloons and let them go tonight. One for each of the 9 weeks of this horrible drug. I'm so thankful that it made him seizure free (at least so far!!) but it changed him and turned him into something and someone else. We will always love him no matter how he looks or acts. He is our baby and I treasure any moment we have together.
Letting the balloons go was like letting all the stress and horrible memories go with them. I cried after every one. Whenever the balloon was no longer visible the pain just seemed to go with it! It was such a great feeling, just letting go!

Last Shot Day!!!!

Today is Jayen's last shot of ACTH!!! We are so excited that we are finally done with the horrible medicine. It is a blessing and a curse all rolled into one. It is a blessing that it has made the seizures stop, but a curse that it took all that time and talent away from him. Jayen is slowly regaining some of the abilities he lost and slowly learning new ones. Every day he amazes me! He just started talking again and seems to be more alert about his surroundings. He is making great progress. We are thankful for the medicine, but are even more thankful that WE ARE DONE WITH IT!!

Dalan played a big role during these 9 weeks of shots. Dalan's job was to take off the band-aid on the opposite leg. (We left the band-aid on to help remind us which leg we were supposed to be on.) He is such a good big brother. He would always make sure Jayen was ok after his shot.

Daddy's Present

We packed the pickup and had everything ready to go when daddy got home from work on Friday. We were headed out of town and dad had no clue where. We met up with Grandma and Grandpa Kuchta at Two Rivers State Recreation Area. It was such a great trip. Our new tent worked great. Dalan had his own room, Jayen had his own room, and mom and dad had their own room. We went fishing, played games and just had a lot of fun. Daddy said the best gift of all though was Jayen's complete 180. This weekend he started talking again!!!! He found his voice back and now he won't stop. He has been talking to himself and anyone that listens (even if they aren't listening he is still talking.) He rolled on his left side too. It was so great just to see how different he is now that we are almost off the steroids. MY BABY IS BACK!!

A Glimmer of Hope

Jayen has been showing a little of his old self. We recently acquired a trampoline from and friend and have been on it almost everyday. Dalan and Jayen both are just on cloud nine when we are jumping on it. They boys love playing together! Jayen is really starting to show more of his personality again. I love that the steroids made him seizure free, but they sure took a lot away from us too. Glad we are almost done!!!

Making Progress

Jayen had another intervention today. He is making progress. He hasn't become an expert on any of our goals, but he is getting there. When trying to roll with the left shoulder he gets on his side but doesn't go the rest of the way. It's a start!!
We also had another neurology appt today. Looking good. Did a few more tests because his blood pressure is borderline scary. We only have one week left on the ACTH so hopefully the blood pressure will go down quickly. We will just have to keep a close eye on it. Still waiting on lab results. Will update later!

Seriously? Pink eye

Ok, I'm not sure why we he can't catch a break. Went to the doctor today and Jayen has pink eye. One more prescription (four times a day).

Nasty looks

We went to the zoo today with Aunt Allissa. It was so much fun, except all the nasty looks and stares. There was a family standing beside us on the koi bridge. The mother tapped the father and pointed our way. The father turned, looked, then blew air into his cheeks to make them look bigger. The two of them turned away, then told a child to look. I was so livid. I wanted to call them out on it right on the bridge. We followed them off teh bridge into the garden. The mother wanted a picture of the family. I overheard her and offered to take it. It took all I had not to take a picture of my finger flipping her off or to just throw the camera in the water. In the end I was happy to be a better person.
We went our separate ways. I was getting over it and trying to forget about it. Too bad when we were ready to leave another little boy said, "Mommy look at him!" while pointing to Jayen.
My little man (and thousands of other people staring) has taught me to not judge people by their looks. You never know why someone is the way they are or what challenges they faced in their journey in life.

Hip Hip HOORAY!!!

One month seizure free! I never thought we would make it to this point. What a great relief. Looking forward to many more seizure free days!

Milestones

Jayen at 7 months old is...
Rolling from stomach to back and back to stomach (right way only)
Transferring toys from one hand to the other
Visually tracks objects across field of vision
Finds lost objects when dropped on floor
Lifts his head 45 degrees when lying on tummy
Brings his hands together to bang toys
Shows interest in objects and activities

We are very excited to see some happy moments in our little baby again. We are getting over this really big bump in the road. Every little milestone, no matter how big, is one step closer to a total recovery!

We had another special education intervention today. Our new teacher was very nice and worked well with Jayen and Dalan. Dalan, of course, ALWAYS wants to "help"! We were very thankful for the help we received! She had so many great ideas on how to help develop Jayen's left side. He is currently rolling over (as his only form of transportation right now) from his right but not from his left. We were given strategies to try to encourage him to work and use that side. A few extra days were added to our schedule. We get to see the teacher Wednesday too!!! We look forward to more interventions and the great ideas!

Mommy's crying because she is happy!

I had to explain to Dalan today that mommy was crying because she was so happy. Jayen started talking again today. I can't remember the last time I heard him talking like that. What a great day!!!

*You never know how strong you are until being strong is the only choice you have*

Can this kid catch a break?

We went in to the doctor today for one of our routine blood pressure checks. Blood pressure was good, weight was high :)! I asked the doctor to come in and look at this "bruise" above his belly button. Matt and I noticed it the other day and I was asking him if he knew what a hernia was. Mother's intuition! Jayen has an umbilical hernia. I really don't know why he can't catch a break. We had plans for this weekend again too. Sorry buddy!

It is so hard to be an advocate

It is so hard to be an advocate for your child. When you are at a restaurant and the waiter brings you your food if it is not to your liking do you send it back or do you just sit there and deal with what was brought to you? I had an encounter like that today. Jayen had his first early intervention meeting today. The teacher was a little "uncooked" and I didn't know how to send her back!
After contemplating for a while and taking advice from a friend, I called our services coordinator and asked for some help. I felt awful asking for someone else but knew in the end that I was doing what was best for Jayen. I have to continue to remind myself that it is OK to ruffle feathers if I am doing what is best for him. I am his voice!