1 Year Ago

I posted some pics of Isaac from October 2008. As you can see he was still such a tiny thing. That's him with his "Gammy."
"Do you think If I look cute enough I'll get some candy?"
Isaac has been a busy man lately with appointments. When we saw his Pediatrician he decided to start weaning him off of the diuretics that he's been on for a year in a half. When he was about 10 months old he started retaining a lot of fluid in his body. At first the doctors didn't know what was going on after doing many tests, so they diagnosed him with Lymph edema. So we tried massaging him and putting tights on his legs to decrease the swelling. At one point the poor guy was so swollen he could hardly move! I was finally done dealing with the doctors shrugging their shoulders and telling us to massage him. I took him to the ER and wouldn't take Lymph edema as an answer so they prescribed him a diuretic that he could take long term. Instantly we saw a difference in his fluid retention and his weight gain eventually was a normal gain and not related to the fluid. Since taking this long term, we have had to monitor his potassium levels closely and he's had to take a supplement so that his levels don't get too low. So hopefully little man will not retain water with this weaning process, but if he does, well, I guess we just go back to square one.

I have been on the fence lately about the h1n1 shot. They are offering it at Isaac's school, but I wanted to talk more in depth with the Pulmonologist about it. He talked to me on Wednesday about the pros and con's. Then we started talking about his immune study. He explained that Isaac has an immune system that matures slowly. Basically his immune system is like a 6 month old baby instead of a 2 year old. One question I asked was why it's not recommended for babies to get the h1n1 shot. He said because their immune systems are not mature enough. Soooo, this makes me wonder...would the shot even work for him? I don't know. I wish their was a black and white answer. Why do these decisions have to be so difficult?

Thank you for praying and thinking about my mother-in-law. She is now in town here and staying in a rehab facility. Hopefully soon she will recover from her fall and be able to come home.

-Colleen

A Special Pumpkin

So I went to the pumpkin patch and what did I see? A little pumpkin just for me! He couldn't do many of the things the other pumpkins could do. He also needed some extra loving care to keep him healthy and from having to go to the pumpkin hospital. As I picked him up out of the patch, I hesitated. I wasn't sure if I was cut out for the job. Then he smiled at me with his bright smile and looked up at me with his cute face. His gentle spirit won my heart. How could I resist? Please say a little prayer for my Mother-in-law. Her and my Father-in-law were vacationing in Hawaii and she fell and fractured her femur at the hip. I don't have very many details as of now as this just recently happened. If you have been following our journey for awhile, she fell and fractured her pelvis back in spring of '08 and had to go through a long rehab period. They could be in Hawaii for awhile. Have a great week!



-Colleen

Our Weekend

Friday we went to the hearing center and got Isaac's hearing aide. The audiologist could see that he was extremely sensitive to the noise so she suggested that we only try 1 aide for now in the left ear to see how he tolerates it. Then if he adjusts to that we can move on to 2 hearing aides. He came unglued in the office when we first put it in, but so far at home, he seems to be OK with it. He usually wears it during story time or when he's playing his game in the stander. One concern I have is that he's getting abrasions in his ear after wearing it for only a short while and I don't know if this could mean that it's not fitting him correctly.We had a nice time on Saturday celebrating my daughters birthday. She wanted to go bowling to celebrate that she doesn't have a broken wrist anymore so we went cosmic bowling. Then we had her friend stay the night and ate shrimp and ceasar salad with ice cream cake for desert. Yum! I know I said this before, but I still can't believe how fast this girl is growing up!
Sunday afternoon it was beautiful outside and Isaac had fun playing with leaves and listening to them make a crinkly sound. Then our little neighbor friend entertained him while he played in his johnny jump up.

More Fun

Boy, do I know how to have fun or what?

Most of the week Isaac's sister has been home from school with a fever and the yucks. As usual we are trying to keeps those nasty bugs away from Isaac. This makes life a bit interesting keeping them separated. So far so good, he's still in his w-e-l-l b-a-b-y stage. Autumn's birthday is in 2 days so hopefully she will be up to partying by then.

We had to cancel Isaac's eye appointment yesterday because I couldn't bring the sick girl along with us. No biggie. He gets his hearing aides tomorrow. Woohoo! and then next week we have an appointment with the Pediatrician and the Pulmonologist.

So I would like to say I always have it together during this adventure, but that's not always the case. Why is it so hard to admit that? Lately I've been dealing with some anxiety that came out of nowhere. It's an awful feeling. So far with some counseling and help from my doctor, I'm feeling better. I guess you could say prolonged stress eventually takes it's toll on you. Thanks for praying!

Have a great weekend everyone!

Colleen

We Have Pictures

We have pictures from the LHP and I thought I would share! Isaac was very sleepy that day so we only got a few pics of him smiling, but I still think he looks dashing!

Storytime With Sister

Isaac is becoming a little book lover lately, especially when his big sister reads him a bedtime story. Since Autumn has to read 20 minutes a night for school, this is a great way for her to do it! Lately the speech therapist has been coming over with books and I've noticed that Isaac seems much more focused than he used to be.

Isaac is in his w-e-l-l b-a-b-y phase lately. (shhhh, we only spell it around him.) His oxygen requirements have been much better than last month and he's on his usual baseline meds. Hallelujah! Please continue to pray for wellness throughout the season. Autumn's classroom is flooding with yucky viruses and flu's, which makes a Mom nervous. There was even a student last week with H1N1. Freak out!

I've been experimenting more with the muir lately and and it seems like just for the first 3 minutes or so I hear those funny noises and then he does fine after that. I think he's just not used to breathing differently and I need to just keep plugging away for short intervals until he's used to it again. He got lots of tickles yesterday so that I could hear him laugh. Such a sweet sound!

Experimenting

In July Isaac went in for a bronchial scope and came out with a larger sized trach tube. I was a little upset when the ENT doctor came out and announced that she had placed the larger tube in and that it would be risky to use the passy muir valve. This is because the new tube would be too large to let air travel around it and it's possible that he wouldn't be able to exhale adequately. (not good)

When he had the smaller trach tube, he was tolerating the valve quite well and he could wear it for long periods of time with no problems. I loved the fact that I could hear my boy make sound and it was also nice that I didn't have to suction him as much. Always a plus!So it's been a couple of months and the ENT doc gave me the go ahead to start experimenting with the muir again with close monitoring. When he wears it he sounds like a scratchy record when he exhales and then when I remove it I hear a noticeable "poof" sound. (probably not good) So I'm having an RT come out this week to take a look at him with me. Hopefully we will get to a point where he can wear it like he did before.

Have a great weekend everyone!

-Colleen