I am always mindful to keep my posts positive, on the bright side of things, and not too crazy with emotion. Well, as everyone else is taking Pinterest inspired Facebook worthy 1st day of school pictures, here is what happened on that day to me. Jordan was in a fit throwing mood that could not be shaken with time out, spanking or being ignored. She started her day in the Owls class - hence the dress. well, you see the dress was not what she had in mind I suppose so a fit was next and we are working on the fact that if you throw a fit you will not get what you want at all. Once we were at school, she calmed down and had a fun day. It was a day - I will leave it at that.
I know there are some moms out there that can appreciate this and know - you are not alone!
The house was a wreck - clothes everywhere! Just for my friends who think - you house is always clean and beds made , etc ....
Here is a fun thing we were able to do! We had a garage sale & sold some things on craigslist, then took the money to update the kids room. I got to decorate a room for my children for the first time. I was so excited! I am completely happy with the way it turned out. We sold the crib and Joey is designing a railing system for the bottom for Joseph.
The updated bathroom with fun finds from Hobby Lobby!
Joey hung up all the 8 by 10's I wanted of Jordan's and Joseph's first year of life. I absolutely love them and excited they are now on display.
Joseph started Wee Care & I was able to snag some pictures of him and Jordan :)
Joseph was a champ with his surgery on August 5th. He required extra oxygen when coming out of the anesthesia like his last procedure. He should be feeling better each day. He's congested with a snot nose which is expected after this type of procedure.
Last week, we had blood drawn for the genetic testing.
This is all exciting to me :) I have this checklist until the end of the year & then condensing dr.'s hopefully!
Genetic blood work - check
Surgery - check
September - ent follow up appt
October - pulmonologist , GI & developmental pedi follow up
December -MRI, neurosurgeon, genetic dr results
Goal is only see the dr that require medicine twice a year :)
I wanted to update everyone on Joseph's diagnosis of --- Cerebral Palsy. His neurosurgeon kept telling me the definition of CP while I was at the appointment to look at Joseph's MRI of his enlarged ventricles. She had been in the room for about an hour & was explaining that yes his ventricles were very mildly enlarged and there was no reason to do anything. Then, she was asking me questions about his army crawling, etc. After I left, I started thinking about what she had said & called the neurologist who completely agreed that he has CP. This is hopefully going to help us start receiving some financial assistance in the medical field. There is a program called Medicaid buy-in for children with special needs & SSI that he should be eligible for now. If you know anyone with questions about all this please have them contact me. I have spent literally hours dealing with this stuff - to the point that the lady at the Medicaid office here in town tells me you need to become a consultant that people come to for help. She is super sweet and was so upset to see me back with him and a diagnosis. Remember - God uses everyone! I love that lady.
First, I wanted to let you all know I fixed the videos that I had posted a while back :) Joseph's horse video & Jordan's swimming lesson video.
Jordan - Oh sweet, ball of energy, smart & loving Jordan. She is loving school & all the fun water festivities the summer brings! She is a huge help lately with her brother & makes him laugh. I heard the annoying words I thought I would never hear the other day - "Mom he started it!" I was so excited the kids were interacting & Joseph was annoying her by pulling her hair. I see this is as huge sibling progress :)
Joseph continues to receive all 8 therapy sessions a week. He is making progress & working hard at new accomplishments. He still attends horse therapy once a week. Joseph's horse Josh passed away unexpectedly a few weeks ago. He now rides a horse named Zipper & Stephanie the PT had Zipper trotting last time we were with Joseph. He thought it was hilarious to bounce up and down. He has learned how to tell Zipper to "walk on" - go - by patting him. He has to either make a sound or pat him in a certain spot for him to go & he likes that a lot. He is able to maintain his balance holding on to the couch for quite a bit longer now & has tried to side step a few times. Just this week we have started the process of getting a walker ordered. This will allow him to be upright & start walking with assistance. He is a fish! He gets all excited when you tell him he is going swimming or to Schlitterbahn. He is all about the water :) He has his adenoids taken out & ear tubes put in on Tuesday, August 5th. He has had his blood - as well as ours - drawn to run a very extensive genetic test. We met with a genetic counselor first who explained that the test will look at the specific genes and look for abnormalities, mutations, deletions, etc that could be the cause of what is going on with him. We will know the results in December. The test will also let us know if he has anything that may appear in the future. Pretty crazy all the info we will receive when he gets that back. If you are curious, google whole x-ome test & you will find more information that will answer your questions.
Joey & I are doing well. We have another huge praise report :) We went to Houston for the baby shower a few weeks ago. I had saved money & was somewhat prepared for the trip. That Friday that we left a sweet lady that is part of Joseph's care called & said she wanted to bring something by. I said sure come on over. she had me come on the porch & handed me an envelope of money. She said God told me you needed this today & I am just delivering. Her & I are finance buddies - we encourage each other in that regards. She is always impressed with how we handle money & says I need to use that gift to bless others. I was shocked & hugged her while we both cried. I explained to her that I had needed that for the trip we were fixing to take & she was so excited she had obeyed :) Isn't God amazing? Just blows my mind how he cares about each one of us & the lives we are living!
I was given this verse by a sweet lady at church a few weeks ago when I was feeling run down, tired, and had no motivation. It has really helped me & I know it will bless you too!
I just love the last part - but you have done none of it. This is a warning for the rebellious Judah. It made me think - dang it - I am going to do that.. There is absolutely no way in my human power I would be able to function on a daily basis. Seriously, all these therapists in & out, people asking questions, seeing kids younger than Joseph move up in ability & walk, handling Jordan & her attitude, keeping up a house, cooking, cleaning, entertaining, working out, dr. appointments, insurance phone calls, & work. really people come on - that is all God's Grace! Yet, all we are to do is turn to our Heavenly Father & rest! That's it. That's where my strength comes from. Now before y'all out there reading this get all crazy on me hear this out - a real practical ways to rest amongst the chaos:
Pandora radio - find a Christian station & leave it there! Listen in the car, while cooking, cleaning, doing dishes etc... This blesses me so much. The other day when I was having one of those life is not fair moments this song came on
I learned the lines and talked the talk
'cuz the road less traveled was hard to walk
It takes a soldier
who knows his orders
To walk the walk I'm supposed to walk
Love like I'm not scared
Give when it's not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on You
Love the words!
Hope everyone is enjoying their summer & staying cool! Be blessed!