OT evaluation

The boys had their first OT appointment. The first one is simply to evaluate the need for the service and to set some lose goals.

Braxton:
Braxton still has some reflexes that at 5 months (adjusted) he should not have. When he kicks his legs, both legs kick at the same time. If you put one leg bent, the other leg bends. His brain doesn't allowed him to work his body parts independent of each other. She said that this is something we can train his brain to do. So when he is pushing out both legs, we are to hold one leg steady. Same with his arms.

Up until a week ago, he wasn't consistently rolling from his tummy to his back. now I find him on the other side of the room. So this isn't an "issue" any longer.

He still stands on his toes when you put him in a standing position. She showed us what to do to, again, train his body/brain to not do this. The brain has a pattern that supposedly we can break.

Some of the behaviors that he was showing, was confusing to her, because she didn't know if that was developmental or from the nystagmus and strabismus http://www.visionww.org/drswindsor-nystagmus.htm
(the crossing of the eyes and the jerky eye movement). He goes back to doc on june 21 for his eyes. She wants to see him weekly.

xander:
She wasn't as concerned with Xander. Not that she was overly concerned with braxton, but xadner wasn't showing the same immature behaviors. Xadner is pretty age appropriate (for adjusted age). With him, we are working on sitting by himself and raising his body on his hands (during tummy time).

She thinks seeing him 2 times a month would be sufficient. I was pleased to hear that.

With that said, OT and PT will be put on hold for a week or so due to insurance issues. We are going to start going to Loma Linda outpatient rehab for their therapy. The facility closer to home didn't take the boys medical, therefore the weekly payment was going to be ridiculous.

c/t scan complete

I can breathe...the scan is over. It started out rough, when the doctor came out and started to dismiss the plan that the nurse and I had made days before. The plan was to feed xander after he was all worked up from the IV, and he'd fall asleep and they could do the test without sedating him or putting him under anesthesia.

The nurse was absolutely awesome! She was not worried about the doctors first reaction, because she assured me that she was the one doing this for 14 years, not the resident. Basically she was saying he didn't know crap and she did (which was true!).

Needless to say, xander slept through it all! PTL! Now we wait for the results.

c/t scan

xander has a c/t scan tmw. The scan is for the cyst that is growing near his eye. They want to make sure it is just a cyst and that its not growing towards the brain or veins aren't making a home within it. I'm nervous. For good reason.

two weeks or so before xander came home from the hospital, he had a MRI done. While he was on the table, sedated, he coded. What this means is his little heart stopped. He turned blue. Thankfully one of my primary nurses was with him, along with an RT and the doctor was right out the door. The nurse immediately did chest compressions, and his heart rate finally went up.

Was it because he was so weak? He was still on oxygen....no one really knows. but to play it safe, we are not doing any sedation tmw morning during the exam. He will go in super hungry (and cranky) and I'll feed him while they do the test. The part I'm going to hate is the fact he has to have an IV (for contrast). :( My cousin is coming with me... (thanks cuz).

praying for God's hand to be on my little guy.

trip to great grandma's house

I got up enough courage to pack up the kids (and all the cargo) and head to great grandma's house (my grandma).

It was a surprise. My grandma didn't know we were coming. She is on bed rest and not doing so great. Needless to say, she was thrilled when the troops rolled in.

After, we went to the Spectrum and rode the merry go round. Caden loved it. Felt like disneyland to him. (kid doesn't get out much!) :)

miss the NICU

I never understood my feelings..and didn't think they were normal. That is, until this morning when I was on my preemie support website (www.inspire.com) and read about other moms who are having the same feelings as I did....do.

If you have never experienced what I have gone through, having a second home called the NICU, then you probably don't understand why I would miss it. Infact you would probably think it's pretty insane. How could anyone miss such a scary place.

But the truth is, as soon as I brought the boys home there was a sense of sadness. My life, for almost five months, of me going to the hospital, was abruptly stopping. Granted it was only for 2-3 hours a day, but those few hours allowed me to develop relationships with the nurses and the staff. Everyday I felt as though I was visiting my family. They went through everything with me. They grieved when we grieved and they rejoiced with us, when the boys reached different milestones. Two of my nurses have already come to visit us a couple times. They will be life time friends and we will be forever grateful for all they did for our little miracles.

It's nice to know that I am not alone when I still find myself thinking and missing the NICU. It's a place that will change your life. The things we saw and heard and felt will forever be engraved in my mind.

Interestingly enough, I still have the NICU phone number on speed dial on my phone (since we called multiple times a day). I see it there everyday...but I have yet to erase it. not sure why... perhaps that's another blog post...

Our first outing

The boys, and I mean ALL the boys, had their first outing yesterday. We went (with help of course) to babies r us to buy them their crib mattress's. I had one cart with caden and a car seat and then one baby was in the other cart. Needless to say, It was a sight. And surprisingly, the babies did really well. That is until they got hungry. We made a bit of a scene with the loud cries--got a few questions and a few comments, "wow, you are a busy mom!" " oh my, how old is your oldest. wow, you are a busy woman!" (i get that a lot, the busy mom part). It's funny, I would be a rich women if I had a quarter for every time I heard that.
I won't lie. I was nervous to do this errand. But after the success, the world will be exposed to the chaos much more often (with my helpers of course). Okay, so maybe chaos is a little overstated.

Good job boys!

Caden!

Love this kid!