As I type this update I am sitting next to the window in our bedroom. Tonight it “THE” night. If you have been following the blog the last few weeks you will know that we have a bear living close to the house. While we love that we live in a remote area with bears living close by, this particular one has been visiting the house almost every night for a few weeks. We have stopped putting trash in the cans but each night he comes up to check them anyway. We have moved the cans, tied them to the trailer, you name it, but still he comes and finds them.
He is just a little too close for comfort and simply eliminating his snacks (aka trash) has not deterred him from our front porch. The spot that he hangs out is out of sight from our door and we are very uncomfortable when we have to carry the boys in and out of the cars.
Tonight we are transitioning to Plan B. We have put the shot gun and some bird shot by the back door and rigged the cans to make some noise when he messes with them. I put some old stinky egg salad into one of the cans to make sure to motivate him with the goal being to fire several shots into the air when he is messing with the cans. We are hoping he will attach fear with the trash cans and stop coming around. Let me make sure you all hear me say, we are not physically harming the bear! Just trying to spook it a bit.
We also put out some trail cameras so we could get some pictures of him tonight and then verify if he is coming back the rest of the week.
The thought of waking up from a dead sleep and having to grab, load, and fire a shotgun makes both Jake and I nervous (in a healthy fear kind of way) so we did some practice runs this afternoon while Malachi was at Vacation Bible School. We thought the loud noises might scare him too much.
We will let you know how Plan B goes! I have a suspicion we may have a funny story for you next week.
I was talking to some friends this afternoon who follow the blog and they were laughing at all the crazy scenarios we find ourselves in. I feel like our life is so outlandish that it sounds like we are making things up…but be assured…all this nonsense legitimately happens to our little family. You can’t make this stuff up!
Okay now on to more updates.
Summertime sure is something special. I feel like a whole new woman this week as Jake has been able to consistently help daytime and nighttime with the boys. Sleep can be a magical thing!
While I am feeling rejuvenated with my 6-7 hours of sleep a night, it is taking its toll on Jake who was used to getting 8+ during the school year. Sleep deprivation can make you do some pretty silly things, and Jake’s week has been full of them. We are taking turns napping during the day and I feel like I am getting spoiled rotten with all this sleep. And highly amused by Jake’s antics.
We had some pretty bad storms this week which proved to be a bit of a reality check with the boys. The power went out late one night and we realized that we aren’t really set up for long term power outages with the boys. Levi’s oxygen concentrator turned off, alarming loudly so we were able to switch him over to some of the large oxygen tanks we keep on hand. His pulse oximeter machine and feeding pump had enough of a charge to stay running through the night so he was good to go.
We keep Malachi on a video monitor at night so we can hear and see when he has seizures and get to him quickly. The one we use has been on since the night we brought him home and the battery is no longer charging, so Jake slept on the floor of his room that night. All that to say, we can function for short periods of time without power but it really made us nervous thinking about a multi-day outage. Looks like it may be time for us to consider looking into generators.
This was our last week before summer therapies and appointments begin so we crammed in as much fun as possible for Malachi. On Monday he went to a friend’s house for a play date which was a much needed mommy session for me. We met these particular friends at one of his neurosurgery appointments and one of the twin boys has a shunt like Malachi. It is always refreshing to be around people who live the same type of life as you and have some of the same worries and fears.
Malachi also went for his first swim of the summer! If you are new to the blog, swimming is one of his all time favorite things to do. He wears a therapy neck ring and can swim independently- he is actually a really good swimmer and loves that he can do something without support from mommy and daddy.
We have been working hard since we got home from Cincinnati to get some much needed things for Malachi through insurance. A little glimpse into the special needs world- for nearly all of his equipment (wheelchair, bath chair, activity chair, etc) he can only get a replacement every 3-4 years. So whatever you get requires lots of thought and research because you will be stuck with it for a long time!
Malachi has outgrown his bath chair so that was the first thing I attempted to get. His primary insurance said that it was a “comfort item” and refused to cover it since it is not medically necessary. Luckily his secondary insurance that he gets due to his disabilities picked up the bill. They usually cost $1,500-$2,000 so we are very thankful. It has been ordered and should be here next month.
The second thing we sought after was a special needs car seat. The one he uses now still works decently but his positioning in it is terrible. We always have to be on guard for things that will make his skeletal system, and mainly his spine, worse. Since we have to have the car seat for 3-4 years we did some major research and went for the fancy one. This one has a swivel base that allows it to turn to the door to load him in and out of it, saving some major twisting for him, and major back stress for me. It has speakers in the headrest (totally unnecessary but pretty awesome). Shockingly, his primary insurance approved it and the seat came in this week!
It does not have a 5 point harness so it functions more like a booster seat, requiring the seat belt in addition to the positioning straps. But my goodness what a difference it makes with how he sits. He is nearly at 90 degrees and his head is aligned at midline. It also has a tray that we can strap toys to for long rides. The swivel base did not come in yet but is on its way.
As you can see, Malachi also got a much needed haircut this week!
The other victories with insurance this week is that they are now covering diapers for him. Praise the Lord! In addition to the diapers, we have also been able to justify them covering a high calorie nutritional drink that we give him once a day. These two victories will save Jake and I over $300 per month!
It makes me a little sad and a lot angry how difficult it is to get special needs children the things that they truly need. The mark up on items is astronomical and there is no way that we could even remotely come close to taking care of his needs without insurance. But even then, it takes hours upon hours on the phone and that can be a real challenge. And after all that work, insurance still denies quickly requiring several appeals.
But looking at the bright side, there are other people in this world that have gone through the red tape before us and have come up with tangible ways to help. There are so many grants available for special needs families, and while the application process can be intense it is definitely worth it in the long run. Many of the things we have for Malachi were denied by both insurance carriers and deemed not medically necessary but we were able to find grants willing to help us get it for him.
Malachi is getting to go to Vacation Bible School this week at church and really enjoyed the kick off this evening! He was still wild eyed with excitement when I went to pick him up.
And an answer to prayer- Malachi’s seizures have lessened significantly this week, only having 1-2 a day. We are so thankful!
We are still battling jealousy a bit. He makes his “no face” when Jake talks to Levi, or gives Levi kisses. He is also finding ways to act out. When I got him out of his bath chair this week to carry over to the changing table I told him “Don’t pee on momma.” He immediately clenched down and sprayed pee at least 3 feet across the bathroom and then laughed hysterically. Very intentional, no doubt about it! He also bit Jake this week VERY hard leaving a nasty bruise.
Now on to Levi updates. He has changed in some big ways this week too. The biggest change is he has stopped vomiting. We have no idea why but we won’t complain. We also successfully made it out in public several times without him shooting fecal matter onto our clothing! Go Levi!
He continues to be quite the personality and he makes us smile with all his silly looks.
He loves to play with his toys. And he never stops moving. It is almost unbelievable how much this child moves.
He is also discovering his voice, which is such a beautiful sound. I can’t get enough of it! I took a video this week so you could hear him:
I explained it on Facebook this week like this:
For his condition (bilateral vocal cord paralysis) you have to think about his voice quality and breathing ability as a combined 100%. In order to breathe at 80%, your voice quality is only at 20%. If we could get his vocal cords open enough for him to breathe at 100% without oxygen, he would not have a voice. So we are always searching for the best middle ground for both to function “just enough”. But we are very pleased with the combination that we are working with now!
This coming week things will transition back to craziness. Malachi and Levi will start their summertime therapy sessions and appointments. Next week we will have to go to Vanderbilt, and Cincinnati the week after that, amidst LOTS of other appointments. We also start summertime practices with our soccer team. If we can make it through June unscathed, July is looking like a breeze in comparison.
A friend gave me a very special and encouraging gift this week that I wanted to share with you all. It is such a good reminder that even though our arrows are crooked and one of a kind, there is beauty in that. What a blessing my crooked arrows have turned out to be. And boy, do they pierce the hearts of everyone they come into contact with.
Jake and I are best friends. I am not being mushy and dramatic when I say that, but 100% sincere. When we met back in 2003 there was a fun connection between us and we both felt at ease being ourselves around each other.
We quickly became friends, and that friendship blossomed into a dating relationship. We dated for 5 long years before we married, waiting until I had graduated college and got a job/had a steady means of financial support.
The stories from those 5 years of dating would have you laughing for hours. Our youth group loves to hear about all the silly and crazy things we got ourselves into!
But even during those early years it was glaringly obvious and undeniable that God had brought us together. He intertwined our hearts in a very special way and God’s hand has been on us from day one.
This week we celebrate 10 years of marriage. As I look at the journey that God has brought us on with our children, I am increasingly thankful that He chose Jake for me to fight these battles alongside.
The Bible says in Proverbs: “Iron sharpeneth iron; so a man sharpeneth the countenance of his friend.”
Some days are tough. But it seems that in those particular days God makes certain that one of us stays strong to sharpen the other. I am so thankful that God prepared our hearts for one another.
This week Jake and I have been talking about the beautiful life we live with our boys. We are so incredibly blessed- and we aren’t just saying that because it sounds like a good Christian thing to say. There is so much beauty in our lives and we feel so honored that God chose us for this task.
Who knew that those baby faced high school kids would have such a intricate path laid out ahead of them. Well, God knew. And He has ordered our steps from that very first moment our hearts connected.
Well, I think the bear is pulling a “tooth fairy” scheme and waiting for me to fall asleep before coming by for a visit. I better head to bed and get some sleep before our adventures begin.
Thank you for continually praying for my arrows. We get so weary, particularly in my prayer time. Knowing we have an army of prayer warriors standing in the gap lightens my load.