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Decanned and Ready to go to School!

Isaac got decannulated on September 28, 2018. The progress he has made since he got decanned was really impressive, by Isaac standards of course. He always takes his time in doing anything.

We went to school on a Friday. Got sick like a dog with flu on saturday and missed two weeks of school. If we add spring break it’s a total of 3 weeks in all! It sure seemed like we wouldn’t be able to attend school at all! We came back for two days and then was absent again for the rest of the week because of an ear infection. By this time, I was beginning to think if God was trying to tell me something important.

Isaac meets with his physical therapist, occupational therapist and speech therapist in school as well. They come at different times and different frequencies. They expressed concern as well on his absences. When he was at school he would cry himself to sleep and sleep for almost the whole session. School was only for 3 hours. His sleep pattern at home still left much to be desired. This was the primary reason why he was falling asleep in school. But after a few days of this we started seeing some changes. He loved being in school. All kids love routine and Isaac was no exception. He started participating in the group activities and even made a friend or two. He also started sleeping well at night and was starting to have a consistent sleeping time. I was also able to find something to busy myself with instead of going to the mall or grocery store everyday! Not a very good idea! My pantry and fridge was full. I did not need to shop. I found a small library very close to the school where I can do my writing and other stuff that needs the internet.

After a couple of weeks, one of the nurses who go to school with him had an emergency and no one was  available to take her place. So he went to school by himself and I had to be okay with the fact that the classroom nurse was there for him just in case he needed some medical attention. He did so well without his private nurse! His teacher, the para professionals and the classroom nurse were so impressed by his behavior. He was so independent! We were so proud of him and how much he has accomplished.

He will be going to a full day Kindergarten program next year. Sadly, we will not be at the school where he attended PPCD. But the great part of it is that his new school is very close to where we live. That saves me the temptation of going to the mall or the grocery store. Hopefully, I will be able to go home and not stay in the parking lot to wait for him. But who am I kidding, right? I will probably be a fixture in that parking lot for a while until I am totally sure that he will be okay and they get to know him really well.

I think Kindergarten will open up a whole new world for him. It will be the most exciting year ever!

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Setbacks…

For lack of a better title for this post, I wrote “Setbacks…” as in the plural form.

We brought Isaac to the emergency room on April 2, Sunday, the day of his party and just a day before his birthday. We got admitted and had to stay until Thursday of that week. It was the most gruelling 5 days of our lives! I couldn’t leave Isaac’s side and he would cry every time he saw someone come into the room. I was glued to his bedside and honestly probably got to take only 2 showers the whole time! TMI but true…so sad. Continue reading

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Two Years Home!!!

Today marks the two years since we came home! We only had one hospitalization where we stayed overnight and it was really because of a tricky trache change and I was being a scaredy cat!

We have gone through so much as a family since Isaac was born at 25 weeks on April 3, 2014. Spending 10 months in the NICU was an eye opening and mind numbing experience if you can imagine those two emotions being combined. Continue reading

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We are going home! Now what?

One of the most long awaited moments for those who have been in the NICU for any amount of time is the moment when the doctor says “we need to talk about discharge”. Finally, you get to leave this place whose halls and walls you have called your second home. But going home presents another obstacle. How are you supposed to bring your trached, vented and tube fed baby home? There are some things you need to accept and get ready for right off the bat. The experience is overwhelming for all parents! It does not matter what kind of degree they have or how old they are. It is challenging, period! Next, you need to have your head on right.If you need a notebook/binder to keep notes of all the things you are going to need or want to do by all means do it! No one is going to judge you! Having had the experience of bringing my son Isaac home more than a year ago, let me break everything down. This post is all about bringing a trached, vented and gtube baby home! Continue reading