In other news....
Boys are doing great and at that age where they are into everything!!! Alex is army crawling and getting faster every day. He amazes us with his strength. I just love the look on his face when he's determined to get somewhere, with an open mouth smile and a cute little tongue peering out. Just too precious for words so here's a video:
Nicholas has been pulling up to stand on everything and is terrifying his parents by starting to furniture walk. (We are NOT one of those parents who is in hurry for their babies to grow up). He started out hanging on for dear life and not really moving except to sit down, then stand back up, and well you get the idea. But is getting braver with lightening speed. Tonight he had the biggest devilish grin on his face as he side stepped the whole length of the ottoman to get to the cat (so sorry kitty). I wish we could have gotten his moving and grooving on video or his non stop laughter when he realized the cat was LETTING him bother her for a change but even without that, its still adorable. This is at the "tail" end of all of that when mommy and daddy thought "oh boy , we should REALLY be trying to get this on video!"
Nicholas is also officially into the temper tantrum stage. I thought one year was bit too soon? Don't people talk about the terrible twos? Shoudln't we have more time? ha,ha. Well whatever its "supposed" to be I suppose doesn't matter. These boys have always been on their own time table. Nicholas threw his first temper tantrum as he tried to climb the diaper champ this weekend and he almost went over with it. After A LOT of trying to distract him to EVERYTHING else in the room, that darn thing had some sort of magnetic field to him and he could not stop trying to scale it. I finally sat him on his bottom and told him No (in that voice that means I'm really not kidding anymore). Well he didn't stop at just sitting down but instead threw himself all the way back on the floor quite dramatically, cried and persisted to kick his feet. I just couldn't help it. I laughed. I laughed HARD. It was just so cute. Although in hindsight this is not exactly the type of response you want to give when you want to show him whose boss (or who pretends to be anyway). And just in case I thought HE wasn't serious about this stage, he continued to have a handful of these episodes throughout the weekend to test the waters. I tried to put my "not paying attention face on", and several times had to walk out of the room to smile so he wouldn't see, but I expect the amusement factor will drop quickly and I will get better at the poker momma face.
- "you talkin to me"?
Knock on wood that Alex isn't showing these tendencies (yet). In fact the opposite, any time his brother fusses or cries, Alex immediately joins in and I think cries out of compassion. Its heart breaking and sweet. To be fair, Nicholas DOES go over wherever Alex is and tries to "tend" to his brother whenever Alex cries. Unfortunately Nicholas's way of "tending" to Alex usually involves touching his face or pulling his hair which Alex for some reason does NOT find comforting and only seems to escalate matters.
Don't you worry though, Alex can hold his own!
look at HIS mischievous face just a couple minutes later!!
On the medical front we would be grateful for any positive thoughts and prayers being sent the boys way over the next few weeks. No emergencies but a few things coming down the pike that are making mommy and daddy just a bit anxious. Alex will be going for his sleep study in a few weeks. The ones that they have tried at home have not gone as well as they would have liked and have only prompted more questions. They want more specific testing now to see if he's having obstructive or central apnea. Without oxygen on at night, he drops his sats more frequently than they like. They don't THINK that he should still be requiring oxygen since his pneumonia back in March and I'm guessing if it was just his over all lung function and BPD, he'd still be needing it during the day which he's thankfully not.
He will be going into a clinic over night where they can hook him up to all the bells and whistles and monitor everything that happens with his breathing, oxygen needs, etc. We are hoping that he will be a very boring student and that they won't unearth any new issues. His appointment is not until Sept. 2nd but he is on a cancellation list so we are hopeful that we'll get a call sooner to get it done and over with.
We also got his surgery date scheduled for Sept. 24th where he will be having the first out of two urology surgeries. They are expected to be several hours worth of surgeries each, delicate work ofcourse, but should be outpatient and can get him right back home.
Alex is also scheduled to get his AFO's (braces) next week and his first major piece of equipment (a stander). We talked a little about this here. I feel mixed emotions about this, mostly positive because I know it will be a very good thing for Alex. The hard part is knowing once the equipment starts to come, it will be a reminder that Alex does indeed have a disability, something that really all during these "baby days" we've been able to blissfully ignore. Please don't get me wrong, I am MORE than thankful that we live in a day and age where there are all of these services and equipment to help him get stronger, more independent. Its just having some of these things stares you in the face even at times you don't want to acknowledge that your child has and will have challenges. I don't know that I'm doing a great job explaining this so I'll just leave it at that for now.
Lastly the boys are having some trouble with dairy products. Not uncommon these days as we understand it. Two months ago we tried giving the boys just some yogurt which they seemed to really enjoy but they both had some skin reactions to it. To be cautious, it was suggested we wait until they were one year corrected age before we tried it again. Well that was this weekend and we're anxious to start trying milk, cheese, etc. The doc suggested we start out just with a skin test. We took it slow and just put some yogurt on each of their arms and a spot on their faces. Alex did better this time and only developed a circle of redness where the yogurt touched his face but Nicholas broke out in hives on his whole cheek. hmmmm. We spoke to the doctor who said this is highly suspicious of some sort of milk allergy and to hold off trying any more introductions until we get some allergy testing done. The puzzling part is that before this last "test", I have been a little less careful with giving them some foods that do contain some sort of milk ingredient in them and they seem to handle it just fine so I'm not sure. I'm kind of disappointed that we might have to juggle one more specialist now and concerns of possibly more reactions in the future. I pray that if thats what it is, they will be two of the lucky ones who can outgrow it when they are older.
Even as I write these things, when ever I start to feel a little overwhelmed at one more set of tests, another specialist to see, I think back to watching them in the NICU. All the cords, tubes, plastic that separated me from my babies. I remind myself that if future Holli would have told me then that we might have to deal with a milk allergy when the boys were older, or braces, a stander, four therapy sessions every week, extra doctor appointments, etc. I just know I would have laughed and said "bring it on, no problem." Thats what I have to remember. I have my boys and they are doing incredibly!!! Not one SINGLE day goes by where I don't feel simply blessed!
Here's a few to hopefully make you smile.
ohhh look, its me!!
let me get a closer look
yep, still cute!
our ham
lately loves when we put things on his head
Alex thinking "a little further down, a little more...."
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