So where we last left off I believe I was talking about the nursing change. Wow did I not realize how much that was going to affect our household :( . I mentioned that I had two nurses this time around, well that didn't last very long. The nurse that was from the agency was not certified in peds vent and once Sol hit a sickness (which was maybe 4 weeks into having this nurse) she and I, were both no longer comfortable with her taking care of Sol. Then I was down to just my part time nurse and waited for the agency to send someone else. Well the first person they sent was not able to hold Sol so that didn't work. The next person they sent was a brand new nurse who had never seen a trach or gtube before and she did not feel comfortable learning the cares, or maybe she wanted full time I'm not exactly sure. After waiting awhile to see who the agency would send next, instead they called me and said they were dropping our case because they had no one interested >:| Just like that. They gave me 4 days notice that they were dropping me, which is fine and all but once they drop sols plan of care that is through the state, I lose my part time nurse as well. I this has been a very upsetting time dealing with this very crappy nursing agency. Luckily someone volunteered to help me switch over to to the independent agencies which is still not done yet but hopefully soon, then I can hire whatever nurse I want to whenever and however I would like. Nursing agencies are the worst!!
Besides that, Sol did go to summer school this year! It was A Lot of work and it sort of freaked me out for the thought of him going to actual school in the fall. It was 4 hours long 4 days a week I think? But we usually only did 2 days a week one time 3 days. There were a lot of kids! And they were all so very grabby and touchy and it made me constantly very nervous. But we learned a lot from summer school and what we need to bring to school and how to modify certain things. I am very impressed with the teachers and how they work hard at modifying the school for Sol. During the summer Sol was really into going down the slides on my lap, but if you can imagine, that turned out to be A LOT of work for me! One teacher brought in her baby carrier wrap thing, and we tried wrapping him to me. That worked really well, gave me a little more use of my hands and Sol seemed to like it pretty well. It is still a lot for me to constantly be going up and down the stairs to get to the slides, but this became much better until he became super into the swings. Swings and me do not mix anymore, I went one day with him on the swing and I was sick the rest of the day! We decided his blue chair would have to work on the swings from now on since I have lost my spinning abilities.
His main teacher for summer school also worked on what we could use to have him travel around the school. I was using his wagon with his blue chair in it, but the wagon is big and hard to turn and kids love wagons so everyone wanted to be in the wagon. After a little searching she did, on her own time(!) she thought about one of those sit and stand strollers and stick the chair in that. She ended up getting it during summer school but Sol got sick the last week so we didn't get it until after school started but we have been using it ever since! It works perfect and it was free! Compared to spending a bunch of dollars on medical strollers... who would have thought?
The other big thing we did starting in the summer was starting outpatient therapy at the CP center. Although this is an hour drive once a week, Sol has figured out a way to go down slides by himself! Which is amazing for me! He has also started to move his head back and forth when he is laying against us, and all this happened after only 2 weeks of sessions. So we are still doing the outpatient therapy up until the end of the year, it has been so amazing to see him gain more and more strength as he grows so we definitely want to give him all the support he needs to keep getting stronger.
Turns out there is way too much for me to catch up on from spring to summer to fall, so that is the basics of what our summer consisted of. Summer school. Preparing for actual school. Which he is now in! We started with two days a week and soon we will have his IEP meeting where one of the things they wanted to talk about was having him come to school as many days as possible. So this week is our first week trying 3 days, maybe if I am feeling adventurous we will come in for the 4th day too... we will see. Now that we have things situated more at school with what he will sit in, adaptions we need to make, it does make school easier to go to, so as long as me and Sol arent totally wiped out, we will keep attempting the 3 days a week at school. I guess I will have to do a different update of the adventures of sol at school... or however I was going to word it. This seems to have gotten too long already!
Well, there we go for a small update from summer. I will make a list of all the other things we did during summer though.
- Celebrated last day of school!
- Went to Smash and Splash at Kalahari
- Got his first salon hair cut! (Sister donated her hair!)
- Ate/tasted a lot of pickles!
- Went to strawberry fest and petted goats!
- Had a sleepover with grandma and grandpa at sols house!
- Went to animal haven zoo
- Visited bay beach with his cousins!
- Saw Daniel Tiger at the childrens museum!!!
- "worked" at grandpas shop
- Saw Fireworks for the first time!!! and Loved them!
- Went to 2 4th of july parades!
- Caught cold #1 in july
- Ate fresh picked Strawberries!
- Saw his Great grandma
- Got an adaptive swing at the park by our house so he can swing every day now!
- Played in the sprinklers!
- Survived a tornado!!
- Went to big sisters Lion King Play
- Played in the rain
- Played with his friend Josiah at the park!
- Went in a space ship at a fun museum in the dells
- Met daddy's friends from brasil!
- Rode a pony!!
- Spent the night in Chicago!
- Saw the big bean in Chicago
- Played in the great lakes at Chicago!
- Went to the Jelly Belly factory!
- Got sick with cold #2
- Went to the fair
- Sat in a Police Car!!!
- Went Swimming!
- Signed up for School!
- Attended his first day of school!!!
Boy that is quite the list! I guess we did more this summer than I thought.. but now we are all caught up!
