CRACKING A JOKE

Jacob got to crack his first joke ever this week, and it happened in school. We had never thought about adding jokes to his talker until his school speech therapist told us to. It didn't take long for Jacob to discover his "joke page", and in the middle of class, Jacob decided to give it a try. The whole class turned to Jacob to hear what he had to say, and they all had a good laugh together. His teacher LOVED that Jacob decided to take over the classroom! This is a refreshing change from us being told a few years back, if we could turn off Jacob's talker during the time the teacher talked, since Jacob was interrupting the class too much. I have to say that I didn't take it very seriously. I got a good laugh out of my boy disrupting the classroom. In silence I was thinking, "you go boy". And this year, his teacher is on the same page as I am.

Jacob has lucked out with his teachers at his school. This year is no difference. She is Jacob's strongest advocate. As all the kids came back from spring break, she asked everyone in the class to rate their health from a scale of 1-5 to determine if the classroom was healthy enough for Jacob to return. All the kids but one was a 4 or a 5. One boy rated himself as a 3. Mrs. B immediately followed up with the boy's parents to make sure he was truly a 3, so she could make a decision for Jacob. As could happen to any 3rd grader, the boy wasn't really sick, he just didn't feel that great in the moment. It still showed me the commitment his teacher has to Jacob, and how she truly gets how easily Jacob can get sick.

Did I say how wonderful it is to have Jacob back in school? Thursday was the big day! Jacob has slept so poorly lately, but he got a pretty good night sleep before his big day back in class. He got to ride the bus once again! As I was sending Jacob off on the bus once again, I told him that on the other side of the bus ride, his friends were waiting.

And they were. As Jacob got off the bus, we could hear all the way from the playground his classmates shouting "Jacob, Jacob, Jacob!" He sure is a lucky boy.

Jacob got to see his para Nerma again. She's incredible, and we all love her so much. Nothing of Jacob's medical needs has ever faced her. Seizures, breathing issues, suctioning, not even the big diapers. She simply laughs. She has a very subtle way of including Jacob in every activity in school. She has a way to work with Jacob and the other kids that is a true gift.

 

Jacob also got to hang out with his OT Mrs. Peggy during art. Jacob loves, loves art.

 

 

We're all so excited to have Jacob back in school! This is where our boy thrives the most. This is where he gets to experience life, and be the 10 years old boy he is. And yes, we will make sure he has some more jokes on his talker ready to go for next week!

 

Love, Maria.

SPRING IS IN THE AIR

Spring rain tonight. It's so soothing, and it smells so good. It makes our trees and lawns beautiful.I'm not sure when this happened, but this is our cherry tree. My favorite cherry tree, a little on the wild side, since we hardly ever find time to prune her.

Every time I switched the calendar page a month forward this year, I wondered where the past month went. This year has been speeding through so far. Volleyball, lots of work, and our boy needing extra attention and care with pancreatitis and pneumonia made the months go by. Very fast.

Now we're middle of April, and we made it through another winter! Winters are hard in this house. I'm not a home body. I need my social and outdoor time. We so easily get stuck in the house during the winter months due to Jacob needing to avoid all the nasty germs that can make him so sick.

The last couple of weeks minus the blizzard that hit Denver, we have started to venture out of the house more and more with Jacob. Therapies have happened on the front lawn, and we are out walking again. I love that nurse Ana shares our philosophy to get Jacob out of the house as much as possible. She has moved his care outside the house, and lets him be out in the fresh air on most days. I know it's quality of life for our boy.

Today, we ventured out to Summits for Samantha's kickoff party. Our boy is not a little boy anymore. He's 70+ pounds, and a tall boy thanks to his dad's genes. I was nervous to get him up the tall stairs, but we made it in one piece! That wheel chair is not a little piece of equipment, that's for sure. But it was all worth it, and here he's hanging with his buddy Cal, sleeping after having been up literally all night! Luckily, he woke up before the party was over.

With sunshine and warmer temperatures, it's time to get the dust off our bikes. Last weekend, Jacob and I both got our first bike ride in. Jacob sure has grown into his bike. No need for extra padding on his pedals any longer. He went on his longest ride in our neighborhood last Sunday!

If all stars align, Jacob will go back to school on Thursday. Jacob is ready. It now depends on the health of his school. Before spring break, there was still a lot of strep throat going around, something that can make our boy so sick. We're hoping for a positive health update on Tuesday, and that we can send Jacob off on the school bus on Thursday! Fingers crossed.

To spring! Love, Maria.

JUST KEEP SWIMMING

"Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim."                                     

                                                                                                                           
                                                                                                                              - Dory, Finding Nemo.

A friend posted this quote today, and I realized that's where we are right now with Jacob.

• Pneumonia - just keep swimming. 
• A collapsed lung - just keep swimming. 
• Blood clotting factors trending down - just keep swimming. 
• Not being able to absorb Vitamin K - just keep swimming. 
• Lipase still elevated - just keep swimming. 

The rest of the house:

• Diagnosed with nasty painful shingles once again - just keep swimming. 
• Work, work, work and figuring out new responsibilities at work - just keep swimming. 
• Computer broken - just keep swimming. 
• Flat tire needing repair - just keep swimming. 
• Hubby behind on work - just keep swimming. 
• Two sleep deprived parents with no sleep in sight - just keep swimming. 
• Behind on catching up with friends - just keep swimming.
• Behind on everything around the house - just keep swimming.
• Joakim and Sarah going out of town - just keep swimming.

I am keeping on to the things that keep me going. I get up in the morning to get my exercise in. I enjoy my first (but not last) cup of coffee a little extra. I get on my conference calls and keep up with work all day (and luckily I truly enjoy what I am doing). I do make time to hug Jacob a little extra hard, and keep up with all the extra issues we need to figure out and coordinate with multiple doctors involved. I make time for Sarah. I drink wine with my hubby and get frustrations off my chest and priorities straighten out, so I can keep swimming.

We have been in the big ocean before. We hardly have a chance to catch our breathe before the next big wave. But we do keep swimming. You can call it resilience. You can call it stupidity. You can call it hope. I just know deep down in my heart that right now, our boy needs us more than ever. So, we will keep swimming together.

Jacob made it home from the hospital this afternoon. He is still a very sick boy coming home with pneumonia and a collapsed lung. A lot of responsibility on us, and a lot of extra care for our boy. We just felt Jacob wasn't safe in the hospital. The respiratory season hit very late at Children's this year, but is now in full swing. We felt if we kept him there any longer, he would easily catch another infection. With Jacob being in and out of the hospital so much lately, I do pray for that miracle to turn things around for him, so we can start building a routine at home once again. That's all I am asking for, and until then, we will just keep swimming.

Love, Maria.

FROM VOLLEYBALL TO PNEUMONIA

Early on Jacob's journey, I sometimes struggled to go from being in the hospital with a sick Jacob to enter the "normal" world of school pickup, Sarah's activities, work and all the other things we do every day. It often seemed harder to function in the "normal" world than in the hospital world where so much was at stake. To go from fighting seizures, breathing issues, and sepsis to do small talk at school pickup was sometimes a struggle. The two realities were too far apart. I especially remember a Halloween party in Sarah's elementary school after having spent an intense day at Children's with Jacob. I was carrying a smile on my face, but it wasn't reaching my heart. I also remember Sarah being very upset at the school party that evening, and I think it was her way of expressing that things were just not ok in our family.

Today was an intense day. Sarah had a volleyball tournament all day. Jacob looked fine when we left, and I knew he was in good hands with Joakim. Jacob had been seizing yesterday afternoon and evening, so we knew something was up with our boy.

We were running late due to a large accident on the highway. In addition, we got a flat tire on our car! It was not the best start to the day. Luckily, the girls had a great day, and won the whole tournament. With the help of several of the dads, I also got the spare tire on my car!

As the girls were playing semi finals, Joakim texted me. Jacob was seizing again. We knew it was time to pack our bags and find out why Jacob had been seizing the last two days.

I had a happy girl as we were going home. We got air pumped up in the spare tire, we got drinks for tomorrow's early tournament, and went home to shower, fix a quick dinner and it was time to pack the hospital bag once again.

As I was driving in to Children's tonight, I felt tired. There are few places as loud as a gym full of volleyball players. I had to find some inner strength to once again "be on" and start being Jacob's advocate for probably hours on end before we finally will see a bed tonight. If we get to our beds some time after midnight, I am going to call ourselves lucky.

Jacob's white blood count and platelet count are low, which would indicate an infection. Jacob's chest x-ray read possible pneumonia. With pneumonia possibly in the cards, the big gun IV antibiotics are now onboard. The respiratory floor is completely full, so they are moving a kid to another floor to make room for Jacob. I am hearing we're lucky we're getting a bed, since many kids have had to stay the night in the ER or even be transferred to a different hospital due to respiratory season being in full swing here. I am sipping my diet coke, since I know I have to give full report when we finally make it up to the floor some time in the coming hours.

Tomorrow, we will repeat today. Joakim will take Sarah to an early all day volleyball tournament, and I will hang with Jacob in the hospital. We just hope our car spare tire will hold up!

Our boy really needs to get a break. Please keep him in your thoughts and prayers and that he will turn a corner quickly with antibiotics on board. Joakim and Sarah are going to Chicago mid week for another tournament. I sincerely wish we're home by then, but for now we're on Jacob time.

Love, Maria.

A GOOD DAY

I had a good day today. It was my first good day since my surgery. Today all pieces came together. I simply felt good, and I sure wanted everyone around me to know.

I finally could Skype with my class again. I verbalized the whole call through. My friends told me lots of jokes today. They all asked about my surgery. I even had to show my incision, which looks a little scary. I love my classmates and Mrs. Brutsch.

As I was done Skyping, I also wanted to show that I can hold my head all by myself. Ana and mom were both excited, since they haven't seen me do this in so long. It made them so happy to see how determined I am. I even Skyped daddy to show him as well.

But oh is my head heavy! Luckily, Ana caught me.

It takes a lot of energy to stay on top. I had to take a little snoozer tonight.

To a good week! Thanks for believing in me. 

Love, Jacob.