Common Rare??

I am always trying to find some new info on SMA and today I came across a phrase that I have seen before but today it stood out to me. They call SMA a common rare disease. COMMON RARE?? Yes common because 1 in 40 people carry it. Yet it hardly ever shows up. But I think that it presents more often than is reported but the cause of many infant deaths is ruled sudden infant death or other causes. Our PT told us a story of a mom and a baby who she is sure now had SMA but the baby died during a nap. Mom put the baby down for nap time did a few things and went in to check on the baby and he was gone. I cant even imagine. Remember 1 in every 40 people carry the gene for SMA. Help find a cure go to www.PetitionToCureSMA.com sign it and pray.

Good stuff

We have a few new things we are doing to help keep Micah's lungs a little clearer. It's working!!! We now have a cough assist machine we do twice a day after a nebulizer treatment of Xopenex and a little Robinul when he seems a little juicy. We do not like the cough assist right now but it seems to work. As you can see he is able to spend a little more time sitting up and not choking. Still fighting with the stroller people and it's been over a month.

Micah-Man

This week so far has already been busy. Monday I took him to the pulmonologist we see and we are going to be adding 3 more steps to our day. Cough assist we will be doing twice a day to help Micah clear the secretion in his chest, Xopenox is a medicine that helps open up his lungs and another medicine that helps slow down the secretions. He is really good at keeping me busy.

Micah has been sick, a little viral thing I think. As you know we took him to the doctor last week and had an x-ray and that was all okay, but this week he has a fever and has been spitting up green stuff. I am not sure if it is from his lungs of draining from his nose, and he has been very fussy. Micah has also had a higher than normal heart rate and that is a sure sign that something is wrong. Last night we gave him the robinol for the first time and it work great!! He still didn't sleep well but he stopped choking on his spit. This morning he seems to be doing much better, his heart rate is normal for him and he is smiling again. He does still have a mild fever just 99.0 but you never know with these kids.

I wanted to share this verse a friend shared with me. I think of Rachel, Kim, Victoria & Bill, Jen and all the other families out there who are facing challenges like this.

"If your law had not been my delight, I would have perished in my affliction." Ps 119:92

Oh Job

"The Lord gave and the Lord has taken away: may the name of the Lord be praised." Job 1:21

I read this at the end of a video on u-tube today. The video was a documentation of the 99 day life of a little boy born with a terrible birth defect. The family celebrated every day of his life and the 99 days he lived were a miracle. I feel so guilty sometimes that I get frustrated with the way things have turned out. Why do babies have to be born sick and why do parents have to be told that their babies are going to die. I know no one ever promised life would be fair or just but God is. No matter how hard things are I have to remember always all thing are made right in God. The verse at the top was said by Job, Job is my constant reminder to always praise God and know he is our hope and constant love. The story of Job is what got me through our miscarriages and now is what is helping me through this. Strength I do not have, endurance I do not have, patients I do not have. All of this is God in me, He is the glue that is holding me together. In the end God blessed Job two fold, I think when we go to be with God we are blessed two fold. - Oh man another hard day, probably due to a huge lack of sleep!!

On the mend

I have been saying for a long time I need to get back in shape, loose a few pounds but this is definitely not what I had in mind. For the last 3 days I have not been well. Wednesday night I began to not feel so well. I didn't think much of it until 10 ish we were going to bed and I began to throw-up and remained in the bathroom getting sick until 3 am. I am doing better now, Thursday I had no strength and sore muscles all over my body and could not eat a thing. I am now up to 1 meal a day, almost 2 but I am still so sore. YUCK!!

The boys are all fine. That is the most important. Micah is enjoying the play thing Daddy built him, he was moving his arm last night and pulling his own hair and smiling. Joseph wants to get out and burn some energy, he has been so good the past few sick days. Daddy is gonna take him to the park in the am and Devo is tired from a long week at work but he is doing well.

Good News

First I have to say I, all by myself, took Micah to Ventura for an X-ray today. This is a huge thing for me. I haven't done anything just me and Micah since we left the hospital 3 months ago. We did awesome. I never knew one small child could have so much equipment!!

Micah's X-ray was normal, fine , nothing wrong !!!! YEAHHH!!! So now we just have to focus on getting him back to his normal. Lots of CPT and lots of rest. He has been sleeping most of the afternoon and is still asleep now at 9pm. We are on our way to recovery. Thank you every one for thinking of us and praying for us.

Thoes lungs!!

After Micah's bath today he seemed extra agitated. I took his temp and there was not fever but he just wasn't himself. I called our nurse and she came out and listened to him and checked him over she, like I thought he had an ear infection and that was what was going on. We took Micah to the doctor and there is no ear infection but he was concerned about the diminished breath sounds on his right side so we are going tomorrow to have an x-ray taken to see if there is a pneumonia starting!! I am very nervous I don't want to end up in the hospital again. Micah is acting okay so I hope it is just a viral thing and it will pass. Please keep praying. Thank you.

Fevers this weekend

I just wanted to let everyone know that this weekend we had a scare. Micah had a fever all day Saturday 100.2 and I couldn't figure it out. His lungs didn't sound bad and his Mic Key button looked fine!?? I started to panic because with Micah I have no idea what a fever could lead to and if I can't figure it out I can't get on top of what ever it is to stomp it out. I called his nurse and her cell was off so I called the office they told me to just give him some Tylenol and extra fluid with his feeds. Yhat night was awful he was woke up crying all night long. But Sunday morning he had no fever. I am very glad he is doing better but I am so confused as to what is going on. We decided to keep him on bi pap most of the day because he sounded a little more junkie today. Hopefully tomorrow our nurse will come and he will sound fine. Joseph also had a fever on Saturday and Devo(my Husband) had a sore throat. My whole family is getting sick, but me!

Stroller update

After many phone calls back and forth a Man from the company we are getting the stroller from came to our house to talk to me and measure Micah and make sure we didn't miss any equipment on the stroller we need. He was a very nice guy he even told me he has a part that can adapt our carseat to hold Micah's head better so I(alone) can take him places in the car and not worry about his neck. He also assured me that once they got the auth from our insurance to get moving on the stroller they most likely won't deny it down the road. That was February 26th and I haven't heard from them since. I called them on the 4th, 5th, and twice on the 6th and no phone call back. So I have no idea where we stand. I called the V.P. from the manufacturer and she said she did her end of the job she is just waiting for them to call and say send it. I still don't know how much it is gonna cost us or how it suddenly is not too expensive but all that matters is we are getting the stroller we NEED for Micah.

Thanks Daddy!!

Today Daddy built Micah this play thing. It is very cool because we can give his little arms support so he can move them around . We also can hang toys and wind chimes from it so he can play INDEPENDENTLY!!! (as much as he can)Thank you also to the Strong family for posting a blog about the play thing they have like this for Gwendolyn, that is where we got the idea. Micah loves it!

A little better day

Yesterday was a hard day for me Micah is doing great but I am having a hard time again. I was doing a really good job of staying numb to all of this and just doing what I had to do every day for Micah and Joseph. For some reason it is all sinking in again and it is hurting all over again. I thought I was done with this until I had to say goodbye to Micah. I am surrounded by family and friends and I feel alone. I hope this will pass.

Micah is doing great still and talking up a storm with his coos and grunts. He's a happy baby!

A hard night

Tonight I was reading a book by Max Lucado hoping to come across some encouraging words to share with my friend who lost her twin girls. I haven't yet found those words, I have realized how thankful I am for God and that some day my heart might not hurt so bad. I am thankful for the loving family I have and for the REALLY good friends I have.

family photos

A couple of weeks ago we had some family photos done. We just got them back and I am in awe of how cute the pictures turned out. The lady who did them is Laura Turner http://www.lauraturnergallery.com/ She always does an amazing job. Her eye for a good photo is a gift from God. We love her she did our engagement, wedding, Joseph as a baby and now our family. Thank you Laura.

The boys

The movie tonight was Sword in the Stone. Joseph climbed up into Micah's crib to watch the movie with him. I love these boys!!

FUNNY?!@?

So I have to laugh about this or I don't know what I would do. All of you moms out there will love this. So my husband is gone tonight, he is at a meeting for work and it's just me and the boys. We are working on potty training Joseph right now so whenever he goes potty he yells across our little house "Big Pee peee!" I was sitting at the computer printing some addresses on some envelopes and I hear the toilet flush. I ask "Did you go potty?" Joseph answers yes. So I told him good job and didn't think much of it.

A few minutes later I hear water running, Hmmm. Joseph must be playing in the water. (I think it's funny how I never think Oh he must be washing his hands!) So I got up and went to look in the bathroom. The water is not running and even stranger Joseph is not in the bathroom! OH MY it's the toilet!! Yeah the toilet is over flowing all over the floor and there is toilet paper clogging the toilet. So I calmly ask Joseph what he flushed. "Paper towels!!" I forgot to have the We don't flush anything but a LITTLE BIT OF TOILET PAPER conversation with him! Good Stuff!!

HAPPY 9 MONTH BIRTHDAY!!

So today Micah is 9 months old!! We had a good day Micah was a silly boy today laughing and humoring Mom as I made silly faces and noises. He made me and Joseph laugh too. I think he is doing better lately he has been sticking his tongue out again as you can see in the picture. When Daddy got home he even tried really hard to make Daddy laugh and was successful. Micah has such a silly giggle.