Perfect moments

Have you ever had one of those moments with your kids where everything is perfect, just as it should be. Not only do you not want it to end but you wouldn't change anything in the world at that moment...perfect...overwhelming love.

One night when I put Miles to bed (in my bed) we lay there on the pillows looking at each other. I said, "I love you." Miles says, "No" with a smile. I say, "Can you say love?" "No," he says. Then looks up at me and says, "lub mama," and smiles. He pointed to my nose and said, "mama noh". Then to my eye, "mama eye". Then my hair, "mama..." (he can't really say hair yet). We giggled, cuddled, hugged...perfect. He reached up and made a kiss sound with his mouth, which means thank you for him (his *very* short version of sign language - it went from the real sign of thank you to blowing kisses and now just kiss noises). I said, "you're welcome baby, thank YOU. Mama loves you". Then he gave me a kiss on my cheek.

It is moments like that when I am thankful for every single doctor that is in our lives (especially those that have saved his life), for every nurse that has ever helped him, every PT, OT and ST, everyone that has helped bring our precious boy to where he is today...here...in my bed...being silly.

This song (below) reminds me of every time I have had to turn him over to an anesthesiologist for surgery, or watch him in that bed as he recovered. Everytime he has had some test done that he hates or gotten blood drawn or a shot, every time he has looked at me and said, "ow mama"...all of those necessary things that he (we) hates. All of the parents that want to run with their child instead of hand them over, that is what I think of. After that perfect moment with Miles at bedtime, those are the things that I think of when I hear this song.

Chasing Cars

We'll do it all
Everything
On our own

We don't need
Anything
Or anyone
If I lay here
If I just lay here
Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel

Those three words
Are said too much
they're not enough

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

Let's waste time
Chasing cars
Around our heads

I need your grace
To remind me
To find my own

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

I don't know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Happy Birthday Riley!!!

5 years old!!!!
















http://picasaweb.google.com/becky.suggs/RileyS5thBirthday


Riley is 5 yrs old today and we are so proud! He really grew over the weekend as you can plainly see in his picture. There must be a BIG difference between 4 and 5! He had a great Superman party on Saturday with lots of friends and got a ton of superhero stuff! It has (of course) been non stop play time since! Thanks to everyone who came, we had a blast :)

On the Miles front...his BP on thursday, that I didn't think we could count, was 150/110. He was screaming but the ped said that it is high even though. His BP friday was 102/78, still high. We got a referal to a renal specialist or nephrology (if we must add another ology) and we were told to see the pc. The other things he is doing are: quick to sweat while playing or just sitting watching TV. He sweats all the time, just faster now. While sweaty, he gets clammy hands and face. And while playing sometimes he closes his eyes real tight and shakes his head a little, then opens his eyes and looks at you strange (like he is dizzy). Then today...He woke up really puffy. He didn't look like himself but was close to back to normal by lunch time.

I played phone tag with the pc today because I had to leave for an appointment - ovary is fine - no change - take b/c pills for 3 months to shrink the cyst - no biggie. When the ped heard that he was puffy she said take him to ER only if it is truly edema. Because he went back to normal, we decided that it wasn't really edema so we didn't go. I will start the game of tag over tomorrow. I am nervous with us leaving town on Wednesday with his latests 'developments' but I am sure we will be okay. There are lots of hospitals in between here and KY. Maybe we should avoid certain states (Arkansas for example) but we will be fine :)

And we are off...

our rockers!

Not that that isn't true but it isn't really what you are here for now is it? :)

We are off ... of the steroid and the antibiotics and only using the Xopenex when needed. The last few nights Miles has not been himself...or has he been himself and he is much more rotten than I remember. We follow up on Friday. The only remaining concern (beside the ones I have every day - all day) is his blood pressure. At the MRI, his BP was 132/63. She checked it again and either got the very same numbers or something very close to it. It was passed off as nerves. His BP has always been strange but is always passed off as nerves. So I will have it checked a few times in different situations to see what we get. I don't want to have yet another 'thing' for him.

We have our 2nd opinion for the gastro issues on the 4th and try number 3 for the MRI on the 12th.

But in the mean time...

We are off ... to Kentucky! I am so excited! I get to meet my niece Sydney and meet my brother-in-law Dustin. I am super excited about seeing my family and being cold! I have already figured out that at my sisters house Vanderbilt is the closest/best hospital for Miles and in Radcliff/E-town without question it is Kosairs. But hopefully we won't need them :)

I hope everyone has a safe and happy (and filling) Thanksgiving!

Update...

Today started at 4 am when Miles needed the breathing treatment. Next I had to be at the Woman's Hospital for a (yucky) ultrasound of my stupid enlarged ovary. That went well too. The radiologist didn't come and talk to me this time. The tech said, "They'll come and talk to you if you have something life threatening or something like that." Me - "She came and talked to me last time." Tech - "Oh, well, it looks better this time." (Does this mean that it was life threatening last time?) Then my docs office called and said that my results won't be back this week! Must be okay, that is not a bad thing. Maybe all of my pain was my lovely little cyst bursting.

On to Mr. Miles...When he had his breathing treatment this morning it sounded like he was trying to breathe through something like fiberglass - if that makes sense. And my mother-in-law said that before his Noon treatment he was breathing rather quick and shallow. BUT...Daddy took him to his appointment today and we did not get admitted. Dr. Tiwari said he sounded better to her and his pulse ox was 95. Continue with the Xopenex and start to wean him off this weekend. Finish the steroid - putrid stuff! Follow up the week of Thanksgiving. We are SO glad to hear this!!! He is such a trooper! He took his prednisolone tonight so well! He puked after the first drop - I am not kidding, it was only a drop. But I got him some water and we did it in 3 shots! I am so proud of my little man and how well he does with his meds! He has had such a rough week. Hopefully we will get some sleep tonight. One thing the doc said is that the cough will last at least another month (that stinks!). Today I had a familiar feeling...well a few of them. You other heart parents can probably identify with this. The build up - stress, stress, stress...worry, worry...what if...why...argh!...apprehension...on edge...exhaustion...(enter good report from doctor)...elation...then a bit of unexplainable something...probably a buildup of the adrenaline and stress...extreme exhaustion...then guilt for wanting to have him admitted...adoration for my strong boy...disbelief at how much crap he has been through and can still look at me and smile and say "Mama ome now!" and give be big hugs. I am so proud to be Riley and Miles mom!

btw...Riley will be 5 on the 20th!!! We are so super excited! Bring on the Superman party!

Yup, it's pneumonia...

So Friday after I posted Miles spiked a fever of 102.9. We went for our follow up for the ear infection at 4pm. The ear was worse! So we got some augmenten. She heard a little something in his lungs and sent us for a chest x-ray. The radiologist said he has a 'bit' of pneumonia. So we got some zithromax. We watch all weekend, waiting for something to get better. Well, he never had a fever again, that is good. Sunday night he is making me crazy with his breathing. He was retracting a bit and his breathing was a little labored. But then it would get better and he would be fine for a while - even sleep a little. I wanted to call the on call service, Sean didn't want to because they would just send us to the ER and the risk of exposure to disease there is much greater than our living room. So when we got up in the morning I got him dressed and had him at the pediatricians when they opened. (the last time I did that, he stopped breathing right in her office) They saw us, no problem. His pulse ox was 92. She (Dr. Miller) heard some weezing in his lungs so we did a breathing treatment. There was only a one point change in his pulse ox but she said he sounded better. She sent us home with Zopenex. (Boy does he hate that!) She said that he also has bronciolitis along with the pneumonia. She said we are on 'max out patient support' and that Miles was at her 'max level of comfortable' Anything else and we take him to the ER to be admitted. I wish they hasd just admitted us. Today we follow up again this time with Dr. Tiwari (that is three days in a row for anyone who is counting). We do 2 breathing treatments and she can hear some improvements in the lungs and then gives a steroid shot. And we have to follow up again tomorrow! It just makes me nuts! It makes me nervous as hell when docs say things like 'max level of out patient support.' So if you could, keep my little man in your prayers. His lungs need to clear of infection and his sats need to get better! (the lowest was 89. His norm is 97) I know that 89 to some is fantastic and there was a time that 89 was great for him too. Hell, there was a time that 70 was great for him. But, he is supposed to hold a pretty steady 97, something he has not really done this whole year. We are seeing a trend of lower sats for this year, which could mean that there is intervention in our future. That is something that I don't want to think about, we still have 2 1/2 years until we need to think of that!

Second Try...

Today was the 2nd try for Miles to have the MRI that was recommended by the Meyer Center. It too was a no-go! His pulse ox was 93% and his temp was 100.1. They were not happy with either of these things. Also, is BP was 132/62 or something like that. Pretty wacky for him. So here we are at home. His temp is going up...101.8 last check. And we have an appointment with the doc to follow-up for an ear infection today at 4pm. The MRI was rescheduled for 12/12...we will see. I am sceptacle to say the least. Maybe 3rd time is the charm.

We are off to naptime...