And laying in the shade. This is the good life!
Sunday, June 27, 2010
Sunday Afternoon
A perfect afternoon for playing in the kiddie pool......
And laying in the shade. This is the good life!
And laying in the shade. This is the good life!
Thursday, June 24, 2010
Immuno....What?
Autumn has been so cute with her brother lately. Now that she's home more she likes to play silly games with him.
I have some prayer requests for the boy.
Today we took him to the Pediatrician's office and they weighed him to see how he's doing with the lasix wean. He initially gained a few ounces of fluid, but now his weight is stable. His lungs are great and he's still on room air (most of the time). The Doctor wants to decrease his lasix completely as well as the Potassium. Please pray that he doesn't start retaining fluid and most of all that his lungs stay clear.
The Pulmonolgist office called yesterday to tell me that his Immunoglobulin test is lower than the last one. For a long time he has suspected that Isaac has a immune deficiency. It's a mouthful, but we will just call it THI. Basically at 3 years old his immune system functions more like an infant. Instead of using the entire tool box he just uses a hammer and a wrench, but it works for him. He will be tested again in 3 months and if that test is lower than the last one then they may refer us to Seattle Children's where we can discuss the possibility of IVIG therapy.
Sam and I are becoming very anti-procedure these days with the boy. Isaac is happy and healthy for him right now and sometimes it's just better to let things be. It is something to consider though for the future or during respiratory season. Last winter he spent 6 weeks in the hospital and we don't want that for him either.
Other than that we are enjoying the weather and being able to take him out for some fresh air and sunshine. I'm going to get him a kiddie pool soon so that he can kick his little feet in it!
I have some prayer requests for the boy. Today we took him to the Pediatrician's office and they weighed him to see how he's doing with the lasix wean. He initially gained a few ounces of fluid, but now his weight is stable. His lungs are great and he's still on room air (most of the time). The Doctor wants to decrease his lasix completely as well as the Potassium. Please pray that he doesn't start retaining fluid and most of all that his lungs stay clear.
The Pulmonolgist office called yesterday to tell me that his Immunoglobulin test is lower than the last one. For a long time he has suspected that Isaac has a immune deficiency. It's a mouthful, but we will just call it THI. Basically at 3 years old his immune system functions more like an infant. Instead of using the entire tool box he just uses a hammer and a wrench, but it works for him. He will be tested again in 3 months and if that test is lower than the last one then they may refer us to Seattle Children's where we can discuss the possibility of IVIG therapy.
Sam and I are becoming very anti-procedure these days with the boy. Isaac is happy and healthy for him right now and sometimes it's just better to let things be. It is something to consider though for the future or during respiratory season. Last winter he spent 6 weeks in the hospital and we don't want that for him either.
Other than that we are enjoying the weather and being able to take him out for some fresh air and sunshine. I'm going to get him a kiddie pool soon so that he can kick his little feet in it!
Sunday, June 20, 2010
Fun At The Park
Yesterday we took Isaac to the park for a meetup for Parent's of special needs children. This is a fun program I just recently joined where Parent's are invited to several different activities a month. Sometimes they meet at the park or they might have a night out for Mom's, such as a stamping party. Isaac was a charmer as usual while we were there, but his sats were less than ideal on room air so he needed the oxygen. We made the most of it anyway! 
Isaac looks on as his new friend Abigail catches a ball. 
He was tuckered out so we let him take a rest before we went on to our next activity.
Later we went to the rose garden. Many of the roses were not in full bloom yet, but we found some beautiful ones.
Sometimes you just have to stop and smell the roses.
Sister wanted to make sure that Isaac could smell the roses so she put the pedals on his stroller tray.
Off to the Japanese garden.....
To check out the fish.
Isaac looks on as his new friend Abigail catches a ball. 
He was tuckered out so we let him take a rest before we went on to our next activity.
Later we went to the rose garden. Many of the roses were not in full bloom yet, but we found some beautiful ones.
Sometimes you just have to stop and smell the roses.
Sister wanted to make sure that Isaac could smell the roses so she put the pedals on his stroller tray.
Off to the Japanese garden.....
To check out the fish.
Thursday, June 17, 2010
Father's Are Special Too
A little over three years ago I called my husband at work to tell him the exciting news. He was going to have a son!! I was so excited for him! I envisioned them going fishing, hunting, camping and doing all of the fun things that Father's and sons do together. On April 20th 2007 we heard the devastating news that our little man had a chromosomal disorder. What this all meant we didn't know, but it probably wasn't good. While I was grieving and shedding a million tears those first few months, Sam was doing what he does best....taking care of things for the family.
When Isaac came home from the NICU at 4 months old with tons of medical equipment and nurses, reality hit my husband like a brick. This was certainly not part of the plan.
Now Sam and Isaac have a special bond. When he walks in the front door from work, Isaac lights up like a Christmas tree and wants to play their favorite counting game together. The funny thing is that now that our daughter is older she likes to go hunting, fishing and camping with her Dad.
Daddy's are the best!!
When Isaac came home from the NICU at 4 months old with tons of medical equipment and nurses, reality hit my husband like a brick. This was certainly not part of the plan.
Now Sam and Isaac have a special bond. When he walks in the front door from work, Isaac lights up like a Christmas tree and wants to play their favorite counting game together. The funny thing is that now that our daughter is older she likes to go hunting, fishing and camping with her Dad.
Daddy's are the best!!
Monday, June 14, 2010
Changes
Sorry I disappeared from the blogosphere for awhile. The weather has been SO nice lately that I just couldn't get myself to sit down long enough to update. If I post less often it's because my daughter is home from school and I want to enjoy this summer with her while she's still a little girl. She's growing up so fast and before I know it she'll be a teenager!
Anyhow, Isaac has a facebook page where I give status updates, in case you want to be friends with him:)
Isaac is still doing well off of the O2, but he still needs a little while he's asleep.
That's OK, I'll take it!
I love this picture I took over the weekend where he fell asleep on his crinkle paper.
There have been some changes going on around here. Good changes. We are finally decreasing his lasix and some other meds. It's nice to to be able to eliminate a med or 2 from the schedule. The decrease in lasix will be a tricky one. I can already see that he's getting puffy cheeks and hopefully he will continue to have clear lungs.
Isaac had fun yesterday going to the park and also swinging in his favorite outdoor swing.
Big sister took him for another wild ride!
Anyhow, Isaac has a facebook page where I give status updates, in case you want to be friends with him:)
Isaac is still doing well off of the O2, but he still needs a little while he's asleep.
That's OK, I'll take it!
I love this picture I took over the weekend where he fell asleep on his crinkle paper.
There have been some changes going on around here. Good changes. We are finally decreasing his lasix and some other meds. It's nice to to be able to eliminate a med or 2 from the schedule. The decrease in lasix will be a tricky one. I can already see that he's getting puffy cheeks and hopefully he will continue to have clear lungs.
Isaac had fun yesterday going to the park and also swinging in his favorite outdoor swing.Big sister took him for another wild ride!
Sunday, June 6, 2010
Teeny Tiny
Last week was filled with early morning appointments. Isaac went to the Endocrinologist to get his thyroid levels checked out for Hypothyroidism. I also talked to the doctor about his growth, which has been a slight concern. He was 24 pounds in the fall and then he had a few hospitalizations during the winter months and lost weight. He's been at almost 24 pounds for a long time...even after the dietitian increased his calories. He's about the size of a typical 1 year old at 3 years old. It does make me wonder how small he will be at 5 or even 10 years old. Will he always be teeny tiny? Of course this isn't such a bad thing since he's easy to carry around the house. They did a lab test in January to make sure that he doesn't have a growth hormone deficiency and they didn't find anything. Most likely the slow growth is somehow related to his chromosomal disorder.We have a new nurse working Sunday night and she seems fabulous so far. She's young, energetic and a fast learner. Perfect! It's been a long process getting her trained for the job, but I think it will work out great. Having a new nurse in the home can be challenging at times, but we have been very blessed with the stability we've had so far. Nurse L and nurse T have been with us since he was 4 months old!
I love summer because we can finally break out of our plastic bubble. Now that Isaac isn't needing oxygen 24/7, something as simple as playing in the back yard or going to the park is much easier. I don't have to fill up the tank or worry that his sats are going to drop while we are enjoying the great outdoors. It's the little things in life. Autumn was so excited about her brother's wheelchair stroller that she took him for a wild ride on the driveway, I had to tell her to slow down! Then she wanted to help by pushing him around the park. She's such a good big sister!
Tuesday, June 1, 2010
Still
Still off of oxygen during the day and most of the night.
A record.
I always dreamed that someday he would eventually lose this accessory, which would make life much easier. I finally concluded that he would probably need it for the rest of his life. Once again, Isaac runs the show around here and he gets to decide when it's time.
We had a very lazy memorial weekend. Just how I like it. It was gross weather so we spent it as a family watching movies and playing video games. Sam and Isaac snuggled up and watched music videos together. Isaac was laughing so hard when Daddy played the record scratch part from rap music. Silly boy!
Continue to pray for Carters family as their sweet boy went to heaven on Sunday. My heart was heavy when I read the news, but I know that he's in the loving arms of Jesus now.
Rest in peace sweet angel!
A record.
I always dreamed that someday he would eventually lose this accessory, which would make life much easier. I finally concluded that he would probably need it for the rest of his life. Once again, Isaac runs the show around here and he gets to decide when it's time.
We had a very lazy memorial weekend. Just how I like it. It was gross weather so we spent it as a family watching movies and playing video games. Sam and Isaac snuggled up and watched music videos together. Isaac was laughing so hard when Daddy played the record scratch part from rap music. Silly boy!
Continue to pray for Carters family as their sweet boy went to heaven on Sunday. My heart was heavy when I read the news, but I know that he's in the loving arms of Jesus now. Rest in peace sweet angel!
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