Sunday, August 30, 2009

August 30

Over the last week Daddy and I have gotten glimpses of our happy baby again! It seems as if there has been a break in your teething, although I can tell it will be short lived. There is already another tooth straining to break through. But we have enjoyed seeing your toothy grins in the meantime! You think the strangest things are funny like when I type on my phone or laptop, kissing your hand, blowing in your hair....sometimes nothing at all. Everything stops when you are in one of those giggly moods, and Daddy and I do whatever we can to keep it going!

We went to the dentist on Thursday. While it wasn't a pleasant experience, it was quick. He looked in your mouth for 30 seconds, you threw up for several minutes, and then we talked for just a minute. He says things look normal for a tube fed baby, and most importantly, healthy. I asked him when these baby teeth developed (in utero) and when your adult teeth start to form (right after birth). I am hoping your adult teeth grow in better since they will have had the benefit of your cholesterol supplement. We go back in 6 months.

Grammy and Papaw got a new dog today--she doesn't have a name yet, but she came over to see you this evening. She is half golden retriever, half black lab, all puppy. We saw the golden side of her when she sweetly came up to you, nuzzled your hand, and cuddled up to take a nap with you. We saw the lab side when she tried to eat your g-button through your shirt, chewed on your toys, and stepped on you. You and I are trying to convince Daddy to let you get a dog...I think these pictures of you and your new buddy may help!

Wednesday, August 26, 2009

August 26

Tonight at church all of the kids dressed up as God's Princes and Princesses. You were no exception, and you felt pretty! Here you are with two of your favorite people, in the tiara they gave you.

You know, as sweet as you are, you are still an intimidating baby. Between your feeding pump, your vomitting, and other issues, I imagine it can be stressful for those who work in the nursery to care for you. But never once at our church have we been made to feel like you were a burden on them. In fact, we all feel so special when we show up--they obviously love you so much. They go out of their way to make sure you have the attention you need, and I am so grateful we can leave you with people who feel comfortable with, so that we can go to church without worry. We love Mrs. Elaine, Mrs. Shanna, and all our teachers!

Friday, August 21, 2009

Blog Picture - 1 Year Old

Each year I plan to change your blog header pic with a new photo of you and Lambie. I think it will be fun to watch you grow in relation to Lambie. Already you seem so much bigger than in your photo from in the NICU that has graced the top of the blog up until this point. Sometimes it's hard to notice your growth since it is so gradual. But there is no denying you are growing!

I am a little late this year...I hope to do the next one on your actual birthday!

Look at how irresistible you are, cuddling Lambie close as you drift to sleep (well, drift as best you can while Mommy is taking pictures of you). Sleep sweetly...and long...and straight through the night....

Thursday, August 20, 2009

August 20

Two weekends ago Daddy and Papaw painted your new room—that’s right, a new room! You get to have a room further from Mama and Daddy, with more space, and with a big girl closet--you outgrew your little armoire months ago. It is easy for you to accumulate lots of clothes since you still fit in your 0-3 and now also 3-6 months…and since Mommy has a hard time passing up a cute, inexpensive outfit. I figure you will wear it for at least a year so it is a good investment!

You need the extra space, but more than anything we need to start making room for Little Brother, so this past weekend Daddy and I (mainly Daddy) moved you down the hall. Even though it is all your same stuff, it took you a little time to adjust—the room smells and sounds different. Plus, your nightlight and window shine at you from a different angle, so you can definitely tell you are someplace new. But now I think you like it fine…Mommy likes it because the new room gets less light during the day, so you take better naps. Better naps for you mean better naps for me!

Pretty much all done, just needs a few finishing touches. There are curtains, photos, and wall art from your old room that need to be brought in and then you will be set!

I love these words over your bed—you ARE our miracle baby! (And you ARE a little girl!)

Wednesday, August 19, 2009

August 19

We took our weekly trip to the med center yesterday, this time to see GI. I was hoping he could give you a med to increase motility and decrease the vomiting, but no such luck. The meds on the market these days aren’t effective enough to justify the risk of side effects. While there, the results of your EEG came up in our conversation, and I found out that your test did not show normal results at all. There was no focal seizure point, since you didn’t seize during the test, but there were “curious abnormalities”. I am totally disappointed, but not even a little surprised. Many SLOS kids have seizure activity, and with the way you have been acting, I couldn’t think of another possibility. So I made a trip upstairs to see our pediatrician and she is going to try to get us in to see neurology sooner than January. The good news is that you are definitely done with dilations! Daddy doesn’t have to probe you, hopefully, ever again. In fact, we don’t even have to go back to see Dr. Kim for 12 months. We love Dr. Kim, but we will be ok with not seeing him every clinic he has!

Tuesday, August 11, 2009

August 11

Today you created your first artistic masterpiece...AND most of the paint was kept on the paper! Here it is, in its rightful place on the fridge. Good work!

Sunday, August 9, 2009

August 9

We got your EEG results back last week--no sign of seizure activity! And while that is exactly what I was hoping to hear, it gives us no clue as to what your "freak outs" are about. Since you didn't freak out during the EEG test or the few weeks leading up to it, so I can't be 100% positive that it isn't a seizure. But of course, in the week since we received the results you have done it many times, every day. I scheduled an appointment with neurology, but the soonest we could get in is January--five months away! So tomorrow I am going to call Dr. Louis, our special needs pediatrician, and see if we can get in sooner, and maybe repeat the EEG.

The past month our home has been tormented by teething. Ugh. We officially have six teeth on bottom, and none of those were too bad. But over the past few days a top tooth has finally broken through (two have been on the cusp for months) and it has been torture for the whole family. There isn't much we can do to comfort you since you won't tolerate a teething ring or anything else in your mouth. You constantly want to be held, and even when you are it doesn't seem to make you feel much better And to make things worse, with the teething comes extra mucus, which you gag on and then vomit. Orajel also makes you vomit because of the strong flavor and extra saliva. Unfortunately, all this has caused you to lose weight over the past month that you didn't have to spare! I know teething is a rite of passage every child and parent must go through. But it seems like such a waste since you won't actually use these teeth for a long time, if ever. What a bear you are! Fussy all the time and not very willing to smile. Ten surgeries, and not one of them caused you to act like this! Not that I blame you--it looks very painful. Your gums are red and swollen, and your teeth are coming in very crooked, jagged and SHARP. I am sure the the lower teeth hurt your upper gums when you bite down. We have a dentist appointment towards the end of August. We will see what he has to say about those chompers of yours. In the meantime, hurry and pop those little guys out so that we can go back to having fun!