Yesterday

Yesterday was a long day. Isaac's temp went up as high as 103.8 and he was lethargic. I almost started packing our gear for the ER, but the pediatrician's office managed to get us in that afternoon. They checked out his ears and didn't see any noticeable drainage that would signify that he still had an ear infection and the good news is they did a swab to check for the flu and he didn't have it. Whew! I also called our agency that handles infusion therapy. They came to the home last night to access his port and draw labs to check for infection. So far today when I called his white blood cell count was fine, but I'm still waiting on the final blood culture. That port is a godsend! It has saved us a few times from having to get labs drawn in the ER or having to take him out to a germ infested lab. Love it! Anyway after stinker gave us a scare, his temp has been rather low grade today..about 99-100.

Isaac's Grandma (my mother-in-law) is doing well and is staying in a new rehab facility. We saw her today since my husband had the day off for Veterans Day. She showed us her new cast that's hot pink with flowers on it. So cute! She certainly has an amazing attitude about her fall and staying there. I'm so inspired!


-Colleen

Eating My Words

Okay, so I don't know if Isaac read my blog or he heard me say it. I mentioned in my last post that Isaac never gets a fever, even with an infection. Well I'm eating my words right now because he woke up this morning with a temp of 101, looking pale and kind-of a high heart rate. Since his normal temp is 96 degrees this temp is very high for him...and I haven't seen a temp like this on him in probably a year. I felt a little unsure when the doc only prescribed ear drops for him on Friday and I thought maybe he should be on and oral antibiotic instead. Anyway, prayers please!

Ear Trouble

Isaac made Friday morning a little interesting by bleeding out of his ear and trach. We had an appointment scheduled already with the audiologist to follow up on his hearing aide, but we ended up canceling that and just going straight to the ENT. I was worried that he may have ruptured an ear drum or something, but the doctor looked inside his ears (which Isaac wasn't too happy about) and prescribed us ear drops for a possible infection. He wasn't himself for a couple days, just wanting to sleep, but by Sunday he was feeling pretty good and happy. The thing with Isaac is he never gets a fever, so we never know when he has an infection like this. There are pros and cons to having a child who gets a fever. At least it is kind-of a nice alarm to let you know when your child has an infection. Isaac's temp is always very cold. Usually around 96 degrees fahrenheit. His brain doesn't regulate heat well.

He's been showing some developmental progress that's unique for him. One thing he likes to do now is play games. He likes to play is a counting game where he taps our hand until we count to 10 or 20. He smiles so big when we count around him! We're also noticing that he doesn't want to sit still for very long. He can't do much with his gross motor skills because of his very low muscle tone, but he wants to move as much as he can when we put him on the floor.

Have a great week everyone!



-Colleen

A First!

This was Isaac's first time ever trick-or-treating! Last year he was too congested and the year before he was going to PICU. It's the little things in life! Even though he doesn't eat much candy, we were just happy to be able to take him out this time and show off his pumpkin outfit. Oh and as you can see, my daughter was an angel. Don't let the costume fool you! LOL. No, she really is a little angel.....most of the time. Check out those wings!

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