Keeping My Chin Up!

Today marked day one of therapy, and Andy did great! Andy's modeling how well he can hold his head up for a 6 week old. No new appointments for this week, so we decided to take it easy and sit back and relax. The kitchen is nearly finished, so construction has slowed down a bit. Andy has become immune to construction noise, and Robby has learned many new talents not mention an increased vocabulary. He can now tell you how to install windows, varnish, measure cabinets, order granite, and install plumbing. I don't think all of the workers knew what they were getting into when they bid out our house; our secret weapon was Robby, aka.. Straw Boss.

Sometimes we just need to lighten the mood. Here's a photo of Andy giving us a quick smile!

Next week Andy has another head ultrasound & visit to the neurosurgeon. We're hoping his head hasn't grown to quickly and that the fluid is not collecting in his brain. We're still working on Robby's sleeping problems - right now Andy sleeps more than him in a night. Keep us in your thoughts and prayers!

IEP - A Whole New Ball Game

It's a little different sitting on the other side of the table during an IEP (Individual Education Plan). As a teacher, I've attended a few IEP's before mainly as the gen. ed. participant, but it's a whole different ball game when it's your own child being evaluated. Knowing that Andy would have to fail a portion of the evaluation in order to qualify for therapy w/ Early On, you have mixed emotions for when the evaluators arrive at your door: he needs therapy, but you don't want to hear all the things that are wrong with your child. So I held it together and resisted the urge to yell out, "No, you're wrong he can do that. He does turn his head & hold it up! He can track an object really well!" Instead, I bit my lip and let them say all the things that Andy isn't doing well... why don't they say what he is doing well??

Unlike all of his other appointments, Early On tests him on what he is currently doing. So as they walked out the door, I was finally able to let the tears fall. We knew Andy would have difficulty with his legs - this we expected, and I guess we should be happy that he didn't pass his evaluation b/c that is afterall how he will receive therapy. If he passed everything, he wouldn't qualify for the physical therapy he needs. So the tears can be that of sadness and thankfulness, and I'm positive that Andy will prove them wrong in the weeks to come; in fact, I'm sure he will surpass everyone's expectations of him & what he is able to do.

Double Blessings

Boy are we blessed - double blessed that is with both boys!

Today marks one month from Andy's birth and he has received positive praise from every appointment thus far. We visited MFB Clinic today, and Andy was a super star! He barely opened an eye ball for the many different people that came in the room to visit him. It was almost funny to think that he might be saying, "Ha - watch me now; I'll show you what I can do"! For now we have to work on stretching his legs/toes so that any potential nerve endings can begin work once they become untramatized. When considering all the other problems Andy could have, we need to remember how fortunate we really are.

Robby continues to make me laugh and be amazed at how quickly children do learn. He has absorbed so much new vocabulary from the construction on the house that I'm sure he could remodel any house for that matter. He now speaks of measuring new cabinets, varnishing the windows, picking out granite, and laying tile w/ mud (his current favorite - probably due to the mud reference). It's hard to say what he likes more tractors or tools!

Hilarious or not-so-hilarious moments of the week:
* Andy peeing through 4 outfits in one day.
* Robby helping Andy get his passy back in his mouth even when he didn't want it.
*Robby asking the plumber for the 20th time in one day, "Watcha doing plumber guy?"
* Robby emptying 1/3 cup of dish soap on the carpet floor b/c he thought it was dirty. How do you get dish soap out of carpet? You can't add water b/c it just keeps on bubbling!!!!
* A 2 1/2 year old yelling no about 15 times in a row (as if that would make you change your mind & give in).

Yes, we truly are blessed by our boys and the many people who have been praying for us!

Great News

Test Results Are In - We're Good! Andy had another head ultrasound today, and it came back "fabulous" as his neurosurgeon said. We're shunt free (for the time being). His head has grown 2 cm since he was born, but he's still in line w/ the 75% he was born at, so for now, we don't have to go back to see them for a month - awesome news!

Andy was also cleared of "limited back time". When we left the hospital, he could only be placed on his back for feedings & short car rides. I was going nuts having been stuck inside for the last three weeks, so I'm really excited to get both of the boys outside for a walk. We are now able to hold Andy in any position (not just his side or belly). Our only limitation is that he can't be submerged in the bath tub yet; we'll take it!

Overall, Andy is surprising everyone with how good the news is. We are definitely taking those good thoughts to heart and praying that they continue down that path. We are scheduled to meet w/ Early On to see if he qualifies for services in a couple of weeks, and I do hope he does. Andy is going to need physical therapy to strengthen his calf muscles & other leg muscles for standing and walking later on. We're hoping that the hospital diagnosis speeds up this process and he can start any therapy he needs sooner vs. later.

So I went off again... in typical Dawn style. At the end of Andy's evaluation at Mary Free Bed, I simply asked when we would be returning. It all went down hill from there. Apparently MFB is way over booked (Andy is 132 baby with SB), and they don't have enough capable staff to handle those numbers. Normally, each child w/ SB visits the MFB clinic where they see a ton of different doctors/therapists all in the same visit; thus, cutting down on the number of outside appointments the parents have to make to see each person individually. Because of the high numbers, their solution to the problem is to have a "virtual" clinic where patients with low needs / high function (such as Andy) can see each doctor individually and the doctor's report will be accessible to the other doctors via the computer network. This will be true for other patients that are high functioning and also live close to GR. THIS IS WHERE I LOST IT! I told the doctor that that was not acceptable. Just because of Andy's current success & close proximity to MFB does not mean he shouldn't receive the same services as other individuals. At the same time, the increased appointments were going to be a huge problem w/ me b/c of taking time off of work. Needless to say, he wasn't expecting a tongue-lashing. In fact, I don't think many of the doctors are used to being talked back to or challenged. His simple reply was that unfortunately, most of the time available by the doctors is given to the "not so good parents". Tom was about to tell me to calm down when I cut him off and told him under no circumstances was our child going to suffer simply b/c some other parent couldn't get their act together. It will be interesting to see where we go from here. We have to go back to MFB later this month, and trust me I'll be armed and ready to fight if needed.

Overall, though, we are ecstatic about the good news! Robby goes back to the sleep clinic tomorrow, and we hope it continues there as well. Our fingers are crossed that maybe some day we will be able to have everyone in our house sleep through the night.

3 Weeks Old Today!

Andy is 3 weeks old today! Last week is merely a whirlwind of time as we adjusted to being home, trying to unpack, and new schedules and construction work on the house. Today also marks the first day of school (which is a little bitter sweet for me); I miss seeing the kids at school, but it is nice not to have to get up at 4:45 each day (oh wait, I'm still doing that).

Andy's doing wonderfully. Today we had his initial evaluation at Mary Free Bed. Dr. Rush (his primary doctor there) said that although he was referred to as a L-3 mylo baby, he has some S-1 function! In other words, he can move his hips, knees, and some ankle/foot movements. He thinks that Andy will definitely need braces once he is able to pull himself up and begin walking, but that Andy should be able to walk without crutches in his adult life! This is awesome news!

Just like Robby, this is Andy's fighting stance. For some reason, my kids both like to look like they are going to deck you when they get their picture taken. Oh well, a little determination never hurt anyone!

Later this week we go in for another head ultrasound & neuro. check. Andy has gained two pounds in the last two weeks (now weighing in at 9 lbs. 4.5 oz) and measures at 22 inches long. His head size has grown 2 cm. as well (this has a bit worried, but we'll have to see what the neurosurgeon thinks on Thursday). For now, my big boy eats nearly 4 oz every 3-4 hours - this equates to a ton of milk!

Robby is adjusting well. The rain has not helped us b/c he has been caged inside, but thanks to family they have entertained him well over the last couple of weeks. He was extremely happy to receive a present from Andy - a bubble blowing lawn mower (hidden agenda - maybe it would tire him out a bit - so far it's not working). Robby revisits the sleep clinic on Friday afternoon - positive thinking here.

Overall, it's been a busy week, and it will only become busier with appointments. So for now, I'll miss school, but my boys need me here. Keep the positive prayers coming - they are really working!