What a difference a year makes

We are having a relatively good week. Sammy has been fever free since friday when he was 102.9. We have been attempting potty training which is rough. It was going really well all day yesterday and then he got watery diarrhea, and well you can just imagine what happened.... Tuesday we tried again and he kept just having little dribbles, so I think I have like 10+ pairs of undies to wash. Not sure why the diarrhea, still eating relatively poorly, but continues to drink well.
He got some funky hives around his mouth today, which again I have no idea what this is from. The last time he got hives on his face, is when he became hypothermic and I am nervous that will happen again, but Praise God it hasn't as of yet.
Sophia is doing well. She truly is RUNNING now and is in to everything. She is a little climber, and is so curious. She is scary as she is just so little and thinks she can do everything that Sam can do.
We are still waiting for the info from Mass General. I called Dr V today but unfortunately she was not in. Hopefully tomorrow

Family fun day

Dancing with my Meme'




The love of cousins








Today we got to hang out with Dad, Dennis, Doreen, and Denise and Ron. We had a blast playing in the pool, and then went to see Mom at the "Summer Stroll" in Leominster where mom was with the Blue Star Moms.

Sammy had a good day today. He ate a little, and had energy and was playing with his friends. He did spike a temp tonight (tomorrow will make two weeks since these fevers started again:-() But other than that he is doing well. I haven't heard about those specialists but am hoping maybe by next week. In other news we have ordered his birthday cake for his party and I am so excited. It is going to be a 3D Thomas the Train!!! He will be so happy I am sure. Hard to believe he is going to be three in just a few short weeks. Yesterday and today I was really struggling in myself with just being overwhelmed and frustrated and feeling emotionally spent, that I just had nothing left to give and then while I was reading some of my favorite blogs I came across this on a great blog the other day, you should pop on over and say some prayers for sweet Camryn as she is battling cancer for the second time in her short life.www.dynamicmikelsduo.blogspot.com. We all have so much on our plates, and often get caught up in sickness, sadness, messes, naughty kids, bills piling up, relationships with family and our spouse, but I am reminded that God trule IS, WAS, and always WILL BE. He is with us each step of the way, may you be encouraged. May you feel Him carrying you in your weakest hour, may He comfort you as He comforts me.


I Am Not But I Know I Am by Louie Giglio

And in the days to come, when you're questioning, needing, searching, wondering, asking, and struggling, you will find His sufficiency at the end of every desperate prayer. When you cry out all the things that you are not, you'll know His answer is, "I AM."

For every cry, there is one answer:

I need help
I AM.

I need hope,
I AM.

Who could possibly be smart enough to figure this out?
I AM.

What works?
I AM.

What lasts?
I AM.

What's the latest thing?
I AM.

What's the hippest thing?
I AM.

I need a fresh start,
I AM.

I need a bigger story,
I AM.

My vision is bigger than my resources
I AM.

Nothing's real anymore,
I AM.

Who can I trust?
I AM.

I'm not sure who's on my team.
I AM.

Nobody's listening to me.
I AM.

I don't have a prayer.
I AM.

My marriage is sinking and I don't know where to turn,
I AM.

I can't hold on.
I AM.

My kids deserve more,
I AM.

I'm pouring into other, who's pouring into me?
I AM.

If we fail, who will get the job done?
I AM.

I'm not sure why I'm here,
I AM.

I've given all I can give and it's not enough,
I AM.

I'm tired.
I AM.

I quit!
I AM.

I can't!
I AM.

I need a drink.
I AM.

I need a fix,
I AM.

I need a lover,
I AM.

Somebody just hold me.
I AM.

And what does this great I AM say of Himself? he says to you and to me: "I am the way, I am the truth, and I am the life. I am the resurrection and the life. I am Savior. I am Jesus - the solution, the restorer, the builder, the answer, the Wise One, the Coming One, the Mighty One. I am the Lord and there is no other. I am God and there is none besides Me. I am the First and the Last. I am the Alpha and Omega. I am the Beginning and the End. I am the Lord, that is My name, and I will not give My glory to another, or any of My praise to idols. I AM THAT I AM, and that is My name - My memorial name to ever single generation."

A better day...

Sammy had an ok day yesterday. He didn't eat too well, but had more energy and was able to play with his friends. He then fell asleep early and slept late this morning. So glad that through this all he can still have some joy in his life.
I had quite a lengthy conversation with his primary care yesterday. Who I must reinterate how truly blessed we are to have her. She is trying to get us in to a special clinic at Mass General for medically complicated children. We will hopefully hear about that this week.
After nine straight days of rain we have plenty of puddles so we had to pull out the froggy boots....

Praying for Sammy

ER
LABS
FEVER
Doctor
Worried
So afraid
Nobody knows
Infection? Maybe?
Time to restart IVIG?
Stumbling, falling, drowsy
Jittery, shaky, refusing to eat
Fussy, whiny, complaining of pain
Now questioning subclinical infection..
And then what? Antibiotics? Hospitalization
Today I am so overwhelmed, so scared, so nervous
We wait, we pray, we love him and we hug and cuddle
We watch Curious George, and Scamper the Penguin
We try to get him to eat, even just a little
We try to not let Miss Sophia bother him
WE Pray without ceasing for our boy
We let him watch TV all day long
We let him sleep in our bed
We hold him so tightly
We wait on our Lord
We give him kisses
We wait and we cry
We pray hard
We Watch
and we
wait.

How do you like my new 'do?

Sammy got a hair cut (finally) Man, it sure does make him look grown up. I knew it was getting long but didn't really realize how long it was. He did really well and we love his new cut.
He still seems to be feeling cruddy, and complains often of belly pain. We actually went to the doctor today and he went right up to her and said : "Dr Trish, my belly hurts right here, will you make me all better?" Poor kid:-(
We are still waiting to hear back from Children's and his GI doc. Dr Trish is calling down there today to see if she can make things happen. Please continue to pray for him.

Well child check up

Sophia had her fifteen month well child check up today. It went fantastic! And for the first time EVER the doctor was happy with her weight. We went from not being on the growth chart at all to being just about the 10th!!! Can you believe it? I am so thrilled and praising God. She weighs 19lbs 11oz and is 29.5 inches tall. She is running all over the place, dancing, jumping (yes JUMPING!), climbing, and generally getting into mischief. She is a happy curious little girl who loves to explore and now likes to give hugs and kisses. She still eats relatively poorly but we are slowly making progress there too. She is loving greek yogurt, blueberries, grapes, pasta and chicken. She also likes daddies homemade oatmeal, french toast, and cereal. She is saying more than 20 words already including Doctor Trish, thank you, more please, up, juice, cup, cheese, milk, momma milk, bye bye etc etc. We are just loving this beautiful little girl and are so thankful that she is finally growing well.

Sammy doodle bugs

It would appear that there is something going on with Sammy. I haven't wanted to admit that there was something going on with him as this is scary to me. Now that we have taken the break from the IVIG to see how he does it is hard to even think about what could happen now. About a week and a half ago he started complaining of some belly pain,(which he often does) but this was different. It was consistent, and in the same spot each time. He really stopped eating and really started just drinking. His stools have been watery and very smelly and he has had increasing amounts of gas. Over the weekend he started running intermittent fevers, and became even more irritable. Tuesday his temp was up to 103! And he only ate one bite of yogurt that day.:-( Anyways called his primary thinking that maybe it was C. Diff again but it wasn't. She then said to get in touch with GI, but that if it wasn't better by yesterday that she would want some blood drawn. WEll I called Children's on tuesday and have yet to hear back from them, they are usually so good about getting right back to me:-( So now we wait, he just woke up a few minutes ago, and is already complaining and is laying down again on the couch:-( Please say a special prayer for him as we determine what this is, and how it needs to be treated.
We have been doing a lot of laying around and watching KidSongs, Curious George and Clifford the Big Red Dog.

Busy

Silly boys! Sammy was throwing popcorn for Daddy to catch in his mouth:-)



Look at those beautiful eyes:-)

Getting some great cuddles and kisses from Auntie Irene



WE had a crazy busy weekend, but had so much fun. My twin sister's highschool graduation party was on saturday, and then today was my sister in law Tracy's birthday. Happy Birthday Tracy!!! Congratulations Girls!!!!
In other news we switched realtors and are praying that this new realtor can get this place sold for us. We already have a showing scheduled for this coming wednesday, so please say some prayers for that.

An attempt at a family photo

We try to get a smile, a smirk something in which we are all looking and appear to be happy, but to NO avail...

Giving God the glory

You know today I have been reminded many times of how blessed I am, and how I often take it for granted. God has brought me through so much and has carried me when I was unable to carry myself. God is so good. We ALL struggle and have our own issues, but we ALL also have God walking with us through it all and I am forever grateful. Today no matter where you are, no matter what you are going through, or where you have been, know that God loves you, has forgiven you, and is waiting to take your hand to lead you through this life

Now that she is walking....

Now that my darling baby girl can do this...

She thinks she can do this...


Crazy girl! How did we go from crawling around last week, to now STANDING and bouncing on my couch this week?!?!?!? And she doesn't even hold on!!! This one is a wild one:-)

Another MOPS playdate

We met again today with the MOPS mommies, and again had a wonderful time. We tried out a new playground, and I am on the fence about it. There were definitely things that were too old for these guys, but the positive was that the ground was this squishy rubber stuff which was awesome! The kids had a blast and it was nice to talk to some adults.