Wednesday, February 3, 2016

January update (6 months old)

Well, if we thought 2016 would be quieter, I believe we were wrong.

We started off the new year with a new van after our crash. It worked out well that friends were selling their van so win-win situation. Now we have a red van (Go Huskers!) which is basically like ours. We took the van on its maiden journey (with us) to see my parents and grandma over New Years. We will never again be staying at this hotel on NYE. People (my husband suspects the employees) ran through the halls at midnight, yelling Happy New Year and throwing confetti everywhere. Yes, it was NYE. I get it, but aren't we at a hotel where the point is so people can sleep?? Princess had an especially hard time sleeping that night (that weekend) so it was rough. She also had 5 blow outs over the weekend. Thankfully, she got clothes for Christmas.
boys got cozy robes
Princess got a crinkly book she loves & time with her grandpa, which she loves

I love getting to see my grandma when we go home!!
The following week, we took Moose to meet our PRNA (I think that's the right acronym) Megan at Children's Mercy in KC. The one thing that really bothers me about any doctor's visit is, the nurse comes in and asks you all sorts of questions and writes down the answers. Then the doctor (or in this case, another nurse) comes in and asks the same questions. What was the point of the first nurse? I just think there should be better communication. I dislike having to spend 10-15 minutes explaining something only to explain it again. I do that enough with my children. Perhaps there is a reason for all of this and, if nothing else, helps me work on my patience.

At this visit, Megan and we decided to set Moose up with a 96-hour EEG. It's an in-patient thing so I plan on going with him for the first few days and Big A the last few days. Hopefully, they could even get enough information to send us home early. They will take him off of one of his medications, both if necessary, to try to get him to have seizures so they can read the data. This will tell us if his seizures are coming from one or multiple areas of his brain. We have this scheduled for the end of February, so keep us in your prayers.

Squirt has a tendency to get jealous over Moose's missing school for doctor's appointments. He forgets how he gets out of school to see the ENT and allergist, too. He commented that Moose "gets all the fun." So I've arranged for him to have a sleepover with a friend one of the nights we will be gone. I'm very sensitive to this middle child and I wish I could sweep over it all to make life easy but I know that this will be for his good, too. Special needs siblings are often very compassionate people and I pray this very thing for him.

He is also emotionally difficult lately. First grade boys are drama. He was getting upset when he was building Legos and said "I'm just stressed!" Well, he takes after his mama. Poor kid. I am trying so hard to mend bad habits I've passed on to both boys when dealing with stress and frustrating situations. I'm not the best at it. Lord, help me.
she found my dress more desirable than toys this day in Sunday School

rarely without a smile, this one

I think we're getting into somewhat of a routine with Princess. I know she eats every 3 hours. As we speak, I am at the end of an almost hour cry-out session with her. It's time. She is finally rolling over frequently. She does not sit up on her own and is nowhere near crawling. She does put her hands down and push her chest up so I'm sure it's not very far behind. However, she has her own way of getting where she needs to go. She rolls, then arches her head back and pushes with her heels. It's very effective. I was working today on a Valentine's Day thing and she was all over in my space. I've made it very clear to the boys that now is the time to start picking up EVERYTHING you don't want her to have: puzzles, Legos, books, cars. It's going to be an adjustment, let's say.

WE MADE IT 6 MONTHS! Huge milestone, I think!
wrapped around her finger, this guy

if you're eating, she wants to be eating. She loves this mesh thing.
tutus are so fun!

looks painful but she loves it

she's everywhere! Although she has not made her way out of the living room yet

It's been difficult for me to let things go that I was used to doing the past several years. Story time was hard for me to say good-bye to but I am glad to not have the planning time of that to do. I've benched myself from many outside activities except what I had a timed commitment to. Big A decided to not continue helping with Wednesday night youth group. That was a very difficult decision for him but I'm thankful for the extra time. It just felt like he was either gone or I felt guilty him staying home on those nights. Thankfully, he still continues to go to a Tuesday morning study with some of the boys. I think that's a highlight in his week.
had a surprise visit from Big A's Mom and Great-Aunt Arlee (pictured here). She hadn't yet met Princess.

My little sister is getting married in August. Very good time to be losing baby weight, for sure. I went to Omaha and took my little Squirt with me to try on a bridesmaid dress. It was a fun day with my family but I was thankful to get home before snow hit.
not the right color but I think it fit nicely.

found "fun straws" at a mall store in Omaha. Squirt has never drank so much water!

Moose had 4 small seizures in January. It's tough to watch him be so unresponsive and then his medicine makes him exhausted. He has been going to bed quite early, which results in an early wake up (anywhere from 2am to 6am) and he has a difficult time going back to sleep (another trait from me). It's hard to have quality time with him, for sure.
Cub Scout cake bake auction
such easy cakes this year! but I bet they were yummy 

Forever thankful for a Daddy who comes home and wants to spend time with the kids and me

We have been severely blessed by our church family during this time. Financially people are crazy generous and we appreciate the gifts, but even more so we appreciate the prayers. We are thankful to be just fine financially (thanks to the stewardship of Big A) and emotionally mostly we are ok. I have days where it's rough to be a mom but any mom can agree to that, special needs or not. We have so much to be thankful for. These days I'm most thankful for the Lord's healing. We haven't seen it on earth yet for Moose but we continue to have that hope of an eternity with our Lord with no more crying, no more pain, and no more epilepsy. I have found a new energy to really be intentional with speaking and acting in hopes of sharing our love of Christ with our children. I know, the decision to follow Christ is theirs but if they do not hear the gospel, how can they follow? Christ has given me this blessed responsibility that I take very seriously, to share His love and to be His hands and feet within my own home. While this may seem small to some, it's huge in the Kingdom because I'm doing my best to be obedient to Christ's calling on my life.

1 comment:

Judi Robinson said...

Thanks for sharing Randi, I know it takes a lot of time but I so enjoy reading your posts. Let me know how we can help when you go for the testing. Also. I have a quote that I keep on my fridge, it says "Your greatest contribution to the kingdom of God may not be something you do but someone you raise". Your efforts are not in any way 'small'!!

happy followers