Brain Splat

School has started in our household. This is the beginning of week 2; some days go perfectly and learning is fun and other days are a struggle to get through each lesson. Such is life when you are teaching three different age groups and trying to keep all busy and happy. Has school started in your area yet?

Yesterday marked week two of being home together as a family. How I missed daily life all together. Life as a stay at home mom can be so mundane but it's funny to realize how much you miss it when it's taken away. When dishes and laundry and big and small messes are your biggest worry of the day you are truly blessed.

Just watching one of the children play in the driveway and realizing how very much you missed this after being away 39 days makes your heart skip a beat.
It's the little things in life, the littlest things, the everyday things. If one good thing came out of this horrible journey it's that I truly know what is important in life now. It's easy to say it, but when it hits you it really hits you like a ton of bricks. Life is so much simpler than we make it out to be.

Now that Jacob's NG-tube is out and he is eating a normal amount he is asking for some of his favorite things. Roasted chicken, tacos, brussels sprouts, mashed potatoes. Today the cupboards were close to bare and I didn't want to venture to the store yet with all three kids (germs are still a big thing to be avoided in our family). As I was hanging up the wash I noticed some red, ripe tomatoes in the garden and knew just what I would make!
My husband and children love tomato sandwiches. When we were newly married my husband asked me to make him one so I spread mayo on a slice on bread, added sliced tomatoes, and put a piece of bread on top, after all, that's how my mom always made her tomato sandwiches (none of us kids ever ate tomato sandwiches, we couldn't stand tomatoes!). He asked, "What's this?" when I gave it to him. Apparently, that's not how he ate tomato sandwiches growing up.

I learned the right way to make them and continue to do it this way for my kids. Toast a piece of bread, add butter, pile on the tomato slices, and sprinkle like salt. They are left as an open faced sandwich. The kids love these and have been known to scarf down 4 or more. The plate above shows just Jacob's plate of food, which he managed to eat in a couple minutes. Add a glass of milk and some fruit and call it a complete meal!

Quilted Happiness

Sometimes we get exactly what we need when we need it.

Yesterday, on the way home from Jacob's 2nd week check up (his counts are still on the rise and looking good...we now have a 10 day break until his next appointment!) we saw a sign for city wide garage sales. It was later in the day but the kids begged to go to a few so we drove around the town and stopped at a few. They looked very picked over by that point so we didn't find anything, until we stumbled upon a sale in a church. I love church sales, they are often run by the older ladies in the church and I find goodies such as vintage linens, fun old dishes, and items that remind me of my visits to my Grandma's house.

Walking into the sale I immediately spotted a table with vintage sheets and fabric. Hidden beneath all that I pulled out these two adorable vintage quilts.
I love, love, love quilts. Knowing that someone put so much time and love into making it (whether it was made especially for you or for a complete stranger) gives me a warm feeling. Vintage quilts are something I have been on the lookout for for quite some time, but they are a treasure that few are willing to part with. I was stoked when I saw these. There is just something about vintage fabrics that speak to me - the bright colors, the fact that they were often made with pieces of old clothing or treasured fabrics.
There was another reason my heart beat faster as I held these quilts in my arms. My Grandma made beautiful quilts and she made each of my children a baby quilt when I was pregnant with them. I have been sad about our newest little one not having that treasure from their great-grandma (yes, there is more than one reason that I have been dreadfully tired, morning sickness is really bringing me down lately). While my grandma didn't make the quilts, I have a feeling that a grandma did, and that will do.

Money doesn't buy happiness. It's amazing how something that costs as little as $1 can bring back a flood of memories and make a mama happy.

Exhausting Is An Understatement

"Caring for a sick child is exhausting," wrote one mother on a blog that I frequent. While her son doesn't have cancer he has a newly diagnosed heart condition which requires frequent doctor and specialty visits.

Exhausting just doesn't seem like strong enough a word. Sucked dry? No rest for the weary? Debilitating maybe? The past week and a half of being home has been wonderful for us as a family but I seem to have come home a different person. An old person, perhaps (does turning 30 do that to a person?!). It isn't just me, my husband has become infected with it too.

Physically speaking, it can probably be summed up as a rush of adrenaline keeping you functioning for a short time but once the risk is over your body is empty of any source of adrenaline. It's more than a tiredness that sleep can fix. It is a bone weary, emotional fatigue that sinks into every fiber of your being. It is a "I can sleep for 12 hours and still wake up tired. The smallest things seem so big, such as the houseplants dying before my eyes but the thought of picking up the watering can too much."

I'm functioning in the ways of schooling the kids, getting food on the table, and keeping the house fairly picked up but emotionally I am just drained. Hubby comes home from work and just wants to sleep. We have become old overnight.

I don't write this for sympathy, as I assume that with time our bodies will adjust and we may become human once again. I write it to tell the truth. Caring for a sick child isn't just exhausting, it is a draining, crippling, debilitating physical and emotional roller coaster. Please excuse me while I head off to bed!

Home

Tomorrow will mark one week that Jacob and I have been home. Home. It's amazing how much more comfortable life is when you are in your own element.

Jacob turned back into his old self 2.0 seconds after walking in the door. He was laughing with his sister, playing toys, running around and playing hide and seek outside. It was an amazing transformation! His check up on Friday looked good - his numbers are on the rise and everything sounds good. We were hoping to get his NG-tube pulled next Friday but it had plans of it's own and fell out last night. I told Jacob that as long as he ate a good amount I wouldn't put it back in and so far he's eating at about 90% of his normal rate so I'm hoping we can say goodbye to the feeding tube forever!

He will have weekly checkups, which will hopefully go to twice monthly soon. He will be having a CT scan soon and then hopefully we will just have to go in every three months.

Things aren't normal though. He still has to wear a mask when outside and in public places. He is on lots of medications. His skin can burn easily and still has a purplish hue from the rash. We have to be careful about sickness and keep the house clean from dust and dirt as his immune system is still quite low. I still worry about scans and check ups. We rejoice in being home now and that is all that matters at the moment!

Brain Splat

Jacob's central line was pulled on Wednesday and an IV was placed in each hand. Plans were for a PICC line to be placed at the same time but his cultures continued to grow so they wanted to hold off on that; a few days ago they decided not to place a PICC line at all since he does so well with his blood draws and not having one will lower his risk of infection.

As long as his cultures continue to be negative it looks like we will be discharged on Monday! He is still not eating much at all but with his NG-tube he will be getting all the nutrition he needs. I have a feeling that once home his appetite will be picking up! He is very anxious to go home and I'm sure these next few days will go very slow for him.

School will be starting soon, though I may push the first day off until the end of the month as we need some normal time at home before rushing into something else. I'm thankful for homeschooling, it has proven to be a blessing time and time again and it is once again apparent. Most children after receiving a transplant can not return to school for several months after finishing treatment, Jacob is able to keep up his studies at home as normal. There are always blessings around us, they just need to be searched for.

Did any of you catch the 20/20 show last night on the Bates Family? I think we have all heard of the Duggar Family, but since I haven't watched their television program I never knew about their family friends, the Bates, who have 19 children as well. It was interesting hearing about their family dynamics. I've never understood the distaste for large families in our society. It may not be for everyone, but when one can afford and chooses to have a large family I don't see why someone outside of the circle would be repulsed. Yes, these families put themselves out there for criticism by allowing their lives to be broadcast around the world but I don't see what there is to criticize in the first place.

If one considers babies a blessing, wouldn't one be open to those blessings? Watching the program last evening showed well rounded children and a happy family; I don't see what the size of a family has to do with anyone else. Why, I wonder, is there such disdain for children and large families in an era when we have more resources than ever before?

Looking Up

Day 33 of this hospital stay. Last week was a disappointment. It was up to me whether we would continue to force Jacob to take his medications and eat, or to put a ng-tube in. Jacob tried so very hard to take his medication and eat but it took hours to do that simple task as his tummy just wasn't up to it. I finally decided that the tube, while uncomfortable for awhile, would help him in the long run. He was a champ while they put it in but ended up throwing it up and needed to do it all over again. He is now used to it and while it isn't fun he is able to get all his medicine and nutrition that way for the time being.

We were told that we could possibly go home on the 6th but the very next day were told that he has a line infection and needs to be on antibiotics for two weeks. That was a tough day, knowing that our stay would be extended greatly. Yesterday they decided that the infection has settled into the line so will be pulling his central line tomorrow and depending on his stats then will either be putting in an IV catheter or just a regular IV in the hand (we hope for the IV catheter as it will be a permanent line in his arm and can be used to draw blood, instead of him needing to be poked every time we show up in clinic). Once he gets the line out, he will need three days of antibiotics and one day of rest but the doctors are optimistic that if everything goes well he can hopefully go home on Monday. Plans always change here in the hospital so I'm not getting my hopes up just yet.

I was able to go home for 48 hours over the weekend to get a much needed break from the hospital, snuggle with my other two kiddos, and celebrate my 30th birthday. My best gift was being able to sleep all night without interruptions...I didn't realize how desperately I needed good sleep but I felt like a different person afterwards. Jacob is feeling better. He hasn't thrown up in over 24 hours (the first that has happened in awhile!) and was up and smiling all day yesterday. I snapped this photo of us together just as proof.