How Could I Resist?

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!

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Isaac's Friend In Heaven

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!

Sunny Days And Nursing Woes

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.

That Big Boy Face

Look at this big boy face. He's not looking like a little baby anymore. He's still a peanut though. The dietitian came out and weighed him today and he was only 23 pounds, 5 ounces. I don't mind if he wants to be small. This makes carrying him around the house much easier for me. Lately he has just been chillin' out at home, staying away from the germs because we don't like the hospital very much. The only appointment we have this month is with the Pulmonologist and I'm moving all of the other ones for when RSV/spring cold season is over. It's just not worth the risk. On Monday we did take him to the hospital for a blood gas. We found a lab where we didn't have to wait in a lobby with a bunch of sick people. They got us in and out. His levels were high as usual, but remain stable.

Autumn has been taking a water color class lately. This was a great program for her while her brother was in the hospital. I'm amazed at some of the creations she's made. Here is my favorite one...the bird house.
And the flamingo...
Don't forget to vote for change to make rare diseases a priority in America at http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease.

Isaac's chromosome disorder is extremely rare and so far he is the only case we know of with the exact rearrangement. When we found out that he was born with this disorder we had many questions. The genetics doctor had very little information for us. You can't even imagine how frustrating that was for us as parents. Hopefully someday we will know more about it, but until then Isaac will have to write his own book. My saving grace has been my chromosome disorder outreach board. It has helped me feel like I'm not alone in this unique world.

If I don't blog for awhile, it's because I'm trying to figure out how to use my new camera. I still need to get a memory card for it and then I will be in camera heaven. I'm so excited!!