Saturday, February 28, 2009

Hold on to Dear Life!

These last two weeks watching our two little heart friends Gracie and Gracie struggle in the hospital, and knowing there are many other ill children suffering around the world each day.....I can't help but think how grateful I am to have my five children at home with us this day. I can not complain about little Mason's health this winter. No hospitalizations. No major illnesses or major problems with his heart (well, it is functioning almost as good as his little broken heart can). Pondering about the struggles of these other little babies and about how quickly life can change has made want to hold my children a little closer and hug them a little tighter! When I have layed down with Mason for his naps this week I have cherished more than ever this time with him and have realized I can not take these moments for granted. Life is too dear to let it sneak away with out appreciating every moment we have with our special children, our gifts from our Father Above! I hope I can remember these thoughts each day when life is hectic and crazy, so that each of my children know how dear and important they are to me.

As for the latest on Mason......we have had a few doctors appointments the last two weeks. We saw his Pulmonary doctor at Primary's and for the most part his lungs were pretty clear. He did have a cough and an ear infection at the time. His upper air ways sounded pretty tight and raspy so he put Mason on a 3 day steroid (in addition to the inhaler meds we do at home already) and I will never give him that certain medicine (prednisolone) again if I can help it! He was miserable and cranky! I am pretty certain it gave him an awful tummy ache! Whether it helped the cough or not I am not sure, I think it just had to run its course.

The following week we were back up at Primary's (on Feb 19th) for a cardiology appointment. It had been about 6 1/2 months since he had been seen by cardiology, so I was quite anxious for this appointment. We saw Dr. Saarel, who very first treated Mason for his Arythmias. She is an Electrophysiologist/Cardiologist who deals specifically with arthmyia issues. She was impressed with how well Mason looks. He is still quite little but she didn't seem too worried about that because he has no eating issues and continues to grow.

When she listened to his heart she said it sounds like his tricuspid valve is leaking again. She said she thought it was pretty mild, but has scheduled him for a sedated ECHO on April 9th to get a really good look at his heart function. His lips and fingers have been more purple lately so possibly the leaking valve is affecting this. She told me not too worry about it though. If she had thought it was severe she would have ordered an ECHO right away.

But what does worry me.....she took him off Amiodarone (his arhythmia medication)! 2 week after we took him off of it last time,(last March) he went into major tachycardia at home and was Life Flighted back to Primary's (on April 3)! She sent him home with a halter monitor to record his heart rate and rhythms for 24 hours and plans to do this every 4 weeks. Although I think I am going to ask for one every two weeks just so we don't run into what happen last time!! They don't like to leave children on Amiodarone longer than absolutely necessary because it can begin to have adverse side effects on their liver, kidney, and thyroid.

My true hope is that his arhythmia issue is gone, that we won't have a Life Flight scare, and that when the medicine is all out of his system (which can take up to 2 months) he can sleep much much better. Dr. Saarel said not to bank on the sleeping better, but I still think this medicine has affected his sleeping! Even if he'd sleep for a 4 hour block at night would be fabulous!!!

That same day (Feb 19th), up at the Child Development Center near Primary's we took Ammon to see Dr. Paul Carbone, a Child Development Pediatrician. He gave us new insight on some more services that Ammon may qualify for because of his developmental delays. He deals alot with children in the autistic spectrum. After visiting with Ammon for a short time, his opinion of Ammon was not necessarily autism but, a very bright and energetic child who just can't focus! I do agree! I will be scheduling some future appointments at their clinic to do some testing and some therapy.

We also saw our pediatrician last week for check-ups. We had Braiden's 6 year, Ammon's 4 year, and Mason's 15 month checkups. I timed them around Mason's Synsgist (RSV) shot. (Ihave certainly earned a lot more of my "doctor appointment Flight miles" this month...ha ha!!) Mason was barely 15 lbs 11 oz. He hasn't gained much weight at all lately. He eats quite a bit, but he is moving around a lot more. He scoots all over the house now on his little behind!

We've been very busy at our house this month. With 2 birthdays, Braiden's was on the 8th, and Ammon's yesterday the 27th, all the doctors appointments,and Kaitlin in 6 performances of the Cinderella play at her elementary school..... added to our every day crazy lives there hasn't been much time to breathe, let alone blog!! My computer won't let me down load pictures, but as soon as I figure it out or borrow a computer I have some cute pictures to post.

I am grateful again for how well Mason is doing considering all he has been through. I am grateful for 5 wonderful beautiful children. May we all let go of all the little unimportant things in life and hug our children a little tighter and alot more often. Life is too short and too delicate not to cherish each moment we have with our little ones.


Stephanie said...

What a wonderful and much-needed reminder for us especially. This is something I am really trying to get better at. Life does get so crazy and those unimportant things tend to take over and the important things get crowded out. I know you have made me stop and think today and refocus on those important things. Thank you.... XO

Natalie Walden said...

Summer, you are truly an inspiration! I have been thinking a lot about what you just said lately. I am really trying as well to forget about all the unimportant things! Sometimes life just really gets ahold of you and you have to shake your head and refocus! Thanks for your words! I read every time I get an email, and although I don't always comment you are still always in my thoughts and have been in many prayers. I am so happy that little Mason is doing so well. I cannot believe so much time has gone by. He is truly a miracle! I hope all is well otherwise. We really should try to get together. It's been too long. Your cute kids will probably look so old to me! We love you guys Summer! Keep in touch! Hugs and kisses to you all! Love, Natalie

queenieweenie said...

what a miracle baby...i'm SO glad he's doing well. keep it up mason!