Memorial Weekend In The PICU

Isaac was admitted to the PICU this morning because he had significant need for more oxygen during the night. We took him to the ER at 2 am after we had him cranked up to 6 liters (as far as the tank would go) and he was still de-satting. For a few days he's been a mystery boy. Super happy, not acting sick, but his oxygen requirements were all over the place. Since sending in a culture this week it grew out an infection. So anyway, they are treating him with IV antibiotics. Since I've seen him MUCH sicker than this in the hospital, my guess would be that he won't have to be there very long before we can treat him at home. It's been a year since our last admit so all things considered, that's a big thing!

More Videos

Some people wanted to know where Isaac was in the last video. He wasn't in that one, but if you haven't seen these, he was in this one and also this one 2 years ago.

Why do I like these videos so much?

When we first found out that Isaac had a chromosome disorder, I spent many hours trying to research it only to find very little information. Then I realized that my son was not going to be just a number. He was going to be the unique little boy that he was meant to be, right down to his cute little face and his sweet smile. These videos put a name and a face to these beautiful children. They are not just a number. They all have their own unique personalities, courage and little souls.

Amazing Children With Rare Chromo Disorders

Big Sister

Big sister Autumn is slowly getting better. Her Dr's office finally found the type of pneumonia she has with some tests. It's a form of walking pneumonia that's apparently hard to beat. She's on another type of antibiotic now. I was very frustrated with them because it took forever for them to finally diagnose and treat her correctly. Since having Isaac, I'm not afraid to be a squeaky wheel when a Dr's office doesn't get it together. I don't think they knew who they were dealing with!:)

Other than possibly having a mild trach infection, little man is doing well. We took him to the dentist today because he's driving us up the wall with this teeth grinding thing he does. Even the nurses are freaking out. He doesn't seem to do it at night, just during the day when he's bored. They didn't seem to have any advice for us, but they said that his teeth don't look like they are in bad shape from it.

The dietitian came over today and said that he hasn't gained weight since her last visit, but he gained a whole inch in his height! Little man is still way below the charts, but at least he's growing!

I cut Isaac's hair last week because he was starting to get bat wings on the sides:) Now he's extra cute.

Craziness...

Lately I am burned out to the core from sitting in Dr. offices.

Tired just isn't the word anymore.

Since our ER trip on Thursday night, big sister has been on Augmentin to hopefully clear out this walking pneumonia crud for good. Yesterday we had a follow up appointment and her chest X-ray showed that since being on 2 different antibiotics for 2 weeks, there hasn't been much of a change.

She's going to see Isaac's pulmonologist (hopefully this week) and have a chest CT done to figure out what's up. She doesn't seem super sick right now like she did on Thursday. The Dr.s office said that she can continue going to school, but she just can't do taekwondo, PE or recess until she's better. This thing is tricky because look at how good she looks in the photo. I thought for sure she was getting better. BTW the girl in the middle is my cousin Denise. I haven't seen her in 6 years. It was fun to catch up with her over the weekend and we had lots of good laughs together.
Please continue to pray and send good thoughts for little miss to get better and for the pulmonologist to find out how to treat her. We really want to take this mini vacation next month to the Oregon coast.....it would be a much needed break for us. If she's still sick, we might not be able to go.

But, there is good news....

Isaac is doing so well respiratory wise that on Tuesday his pulmonologist said that we only have to give him neb treatments 2 times a day. I know that doesn't seem like a big deal, but for a long time we had to give him nebs every 4 hours around the clock just to keep him out of the hospital!

Spring!!

Spring has finally arrived here after several months of snow, more snow and rain. I'm happy to report that 2 days ago I got a sunburn on my nose and our fruit trees are producing beautiful flowers in our yard. I'm also happy to report that after 3 weeks, I'm finally done with that horrible bronchitis. I had to go on another round of antibiotics on Monday because I was still coughing a ton. This is a very resistant bug we have going around because poor Autumn started having a relapse with pneumonia yesterday. I had take her in to the ER last night because she was having trouble breathing good and she was spiking a temp. After a chest X-ray the Dr. said that she had pneumonia in her left lung. They put her on a different antibiotic this time. I seriously don't know what's going on with us girls! I've been going to the health food store and we've been taking certain herbs to boost our immune system.

Isaac had a Shriner's appointment on Wednesday. You may remember this post where he had X-rays of his hips and I was suddenly hit with the reality of him developing dysplasia. It appears that with this appointment there isn't an improvement and that his hips are actually 60% dislocated. I was thankful for the nurse practitioner because she was very informative and understanding when I expressed my concerns about the pros and cons of a spica cast in the future.

On a positive note, Isaac isn't needing the oxygen during the day. I can also see the gears turning more in his sweet little head when the teacher comes over and works with him. Here he's concentrating really hard when he's taking the pegs out and putting them back in.

Isaac Says "I Love You" To His Mama

Since Isaac has many hand limitations, signing I love you isn't an option, BUT he can say it on the iPad. Of course I wish my sweet boy could tell me vocally, but I'm thankful that he's able to tell me any way he can!
Here he's saying that he wants a toy. Each time he touches the star it changes color and it says another word.
Isaac has 4 of his favorite toys to choose from. He chooses the iPad this time.
Good choice!
You're probably wondering how Autumn is doing. She's feeling much better. They sent her home on Monday with 2 strong antibiotics. Yesterday I thought she was ready to go back to school, but apparently it was too soon because she felt tired and weak and spent time in the sick room. So today she's resting some more and will hopefully have more energy by Monday. Thanks for the prayers. It's always 10 times harder to have a healthy child sick when you already have a child with medical issues. Isaac still isn't on room air, but hopefully we can work on those lungs and he'll be back to baseline soon. I'm hoping from here on out we stay well because we are planning a mini vacation soon, which will be HUGE for us!

Happy Mother's Day to all of the awesome Mama's out there!

Urgent Care.....

With Isaac's sister today. She was coughing a ton this morning with a high fever so I called her pediatrician, but they couldn't get her in. After waiting 2 hours at urgent care, they did a chest xray and told me that she has pneumonia. A simple visit to the urgent care quickly turned into a hospital bed with IV antibiotics. Luckily we only had to stay there for an extra hour and a 1/2.

Poor Autumn, she's been through so much with her brother that it's almost too much for her to deal with needles or any kind of medical procedure period! She was pretty freaked out about getting an IV. She's home now and is feeling weak with a high fever. Isaac continues to struggle with his cold and is still needing the oxygen during the day and extra neb treatments. It does seem like he's slowly getting better so hopefully he will be having room air days soon.

What else can I say other than this Mama is tired and I just wants us all to be healthy!