Yesterday was an interesting day. First off, over the weekend Isaac was doing so fantastic that we were able to take him off the oxygen for 5 hours! I was shocked when the nurse woke me up yesterday morning to tell me that he had a fever and needed 3 liters of oxygen. What??! While waiting for the doctors office to call me back, I helped Autumn dye Easter eggs. At least it helped me stay sane for a minute or 2. 
By noon his heart rate was staying between 175 and 180 beats per minute. When I finally got a hold of the doctor's office, they didn't want to touch him with that heart rate and suggested taking him to the ER.....sigh. The good news is that he doesn't have RSV. I'm waiting for the hospital to call me back now as they want to send him home by tomorrow or maybe even today. He has to be home for Easter and his birthday! On a positive note, Autumn got her ears pierced over the weekend! Here are her beautiful earrings.
Isaac has very low muscle tone so he has never been able to crawl or walk, but that doesn't mean that he isn't going places! He's been rolling for awhile, but a few weeks ago when I put him on the floor he disappeared! He's found creative ways of getting around. When he wants something, he rolls until he gets it! It's really nice to see that he isn't bored when I put him on the floor anymore. Another thing that he loves to do is dance. I will have to post a video of him dancing to row row the boat, it's too cute! I hold him up and he gets those legs moving with a great big smile on his face!
Autumn and Isaac are having an after bath story time in this photo. She's such a good big sister!So what's new in our world?
Isaac has been a good boy lately and he's been doing wonderful with his oxygen requirements. Periodically we have been taking him off of the oxygen and he does great! Spring is in the air and yesterday he went for his first stroll of the season around the park. He loved it!
He got fitted for glasses last Monday, so they should be arriving soon. We meant to do that a long time ago, but the little stinker kept going to the hospital. He's going to look SO cute in them and I will be sure to post photos. The lady at the eyeglass store was super nice. She let us come in before hours so that we could stay away from the germies. On Friday we went to the Neurologist. He went over the most recent MRI, which was done in December. They wanted to rule out that he wasn't having any changes, since he was requiring so much oxygen during that time in the hospital. Everything looks good, no changes. His main brain abnormality since birth is the small Cerebellum and Microcephaly. He's not having any breakthrough seizures, so we didn't change any of his medications. He was actually impressed with Isaac's awareness when we described what he's been doing lately. I love his Neurologist...he's such a nice guy, but I didn't like him at first when he told us that he didn't know if Isaac would ever recognize us (in which he totally does and more).We have also been looking for houses like crazy and we are about to go crazy! We really love were we live, but the house is not going to work for us as Isaac gets bigger. We have been looking for houses with a bedroom that he can have on a main level. So far the good ones are either sold or wouldn't work for us. I know that God has a plan for us, even if it means were are supposed to stay here for a little while longer.
Since Isaac's 3rd birthday is less than a month away, I decided to share this montage of our year. Isaac you are my sugarpie honeybunch and .........you are amazing!
I don't know why, but I've been thinking about this girl a lot lately. Maybe because spring is just around the corner and it's been almost a year since her passing. Maybe because another Caringbridge friend that I have been praying for has gone to heaven this week.....another unfriendly reminder of how fragile this life is. Many of you were following our blog when she passed away, but for those of you who are new to our journey, I'll shed some light on her story.We were connected to little miss Gabby through the hospital because they both shared a similar chromosomal disorder....a deletion off of chromosome 10. I was floored when I heard that there was a child the same age, in the same town with such a rare disorder. Not only that, but they lived less than 3 minutes away from us! What were the odds? When I met her for the first time, I instantly fell in love. She was cute and sweet and reminded me of Isaac in so many ways....her dainty features, her contagious smile. When we put them next to each other we could tell that they had an instant connection. It was as if they knew that they had something in common. Gabby was so cute...she used to like to hold hands with Isaac and he would just give her this serious look.One thing about her that reminded me so much of Isaac was her fighting spirit. She was very sick during the last months of her life, but she always managed to find a reason to smile. When she passed away it was a strange feeling. It was a reminder of how in an instant these fragile kids can earn their wings, just like that. I was so sad, yet happy that she was now up there running, playing and free of tubes and wires. One day her and Isaac will meet up there and they will play together. I told him not now, he needs to stay with us for a very LONG time before he goes up there. Here are some photos of them together with the quilts that were made for them from Snugglebunny Quilts. This was probably about 6 months before she passed away. We love you Gabby! You will always be remembered!
It was a beautiful spring day yesterday so we took advantage of it by taking Isaac out in his swing. He was trying to hide from that big ball of sun shining in his face, but he still enjoyed himself. 
I would like to get him an outdoor swing that's better suited for a special needs child. Does anyone have any suggestions? He doesn't have very good trunk control, so we need something that would give him more support and that he can also grow into. I'm almost afraid to say it, but I haven't seen his respiratory status this good in months. We have even been taking him off of 02 periodically for 30 minute intervals and his sats are staying up in the 90's. I know this can all change overnight, but it's during these good times that we have to enjoy the moment. One day at a time....we have great days and not so good days, but today is a good day! Hooray!
I got a phone call from the nursing agency this week and they told me something I didn't want to hear. Our nurse that works Sunday nights has found another case where she can work days. I can't say I blame her for taking the job, but it will be very hard to replace her. We have had several nurses in our home for past 2 1/2 years and she is top-notch. I told Isaac to be extra cute last night so that she would maybe change her mind and Sam tried bribing her with chocolate....that didn't work either. This morning it hit me hard when she left...for good. I tried not to cry. Hopefully the new nurse will work out. I haven't met her yet. I know that God will take care of us no matter what.....he always does.
By noon his heart rate was staying between 175 and 180 beats per minute. When I finally got a hold of the doctor's office, they didn't want to touch him with that heart rate and suggested taking him to the ER.....sigh. The good news is that he doesn't have RSV. I'm waiting for the hospital to call me back now as they want to send him home by tomorrow or maybe even today. He has to be home for Easter and his birthday! 
