Saturday, May 10, 2014

Update of the Century!

Wow. It's been six months since I last blogged! I'm embarrassed. From someone who used to blog almost twice a month! Just goes to show you what two kids has done to me. Obviously a lot has changed the last six months. I even started this post like two months ago and have had to add a lot on! So get comfy it's long.

I'll start with Hudson who turned TWO in January! And if there's one thing I like to keep updated is his cleft progress. We are currently in the middle of getting speech therapy started! Hudson and his lack of proper talking has been very challenging for Curtis and I. This may be one of the hardest parts of his cleft journey for me or just this toddler business for that matter. It's caused a lot of tantrums and much frustration. Since I've been a nursery leader at church it's hard not to envy these moms who's two year olds and even 18 month olds who can clearly say words and sentences properly. He has improved a ton in the last 4 months though and we do know some words and sentences he uses. Lately he has been very good at repeating what we say. Like the other day we were pulling into Target and how can you not shout "Yay! Target!" when parking?! So he starts to say "tah-geh!" It was cute. And today he was saying towel "ow-el". And he says "Oh-wa" for Nova. I love when he's yelling for her.

He was evaluated for speech therapy two weeks ago which he will be starting in a couple more weeks. I really love the speech pathologist who is on his cleft team. The problem with this is that she is in Phoenix. And he will need therapy once a week. Such a drag! But she works specifically with cleft kids and is really great with Hudson. I don't want to have to worry about finding someone else we like if it means we don't have to drive an hour away. So I'll deal with it. I've been looking for fun things to do around Phoenix to make the trip extra worth it and fun for the kids. So far lots of splash pads!

So the speech pathologist, Dr. Leech, went on about how smart Hudson is and how well behaved he was there! But we already knew that... I told him she hasn't seen him at home. She said he should pick up therapy pretty quickly and if he happens not to improve much then it could be a palate issue which means that would need to be corrected with in a year. She said sometimes their palate is just not long enough to make the right sounds. She told me a lot of his sounds come from the back of his throat and that he doesn't use his palate much to talk. So she hopes to correct any bad habits before it's too late! Fingers crossed!

On a happier note he had his two year check up with his surgeon, Dr. Beals, and he was impressed with how everything is looking still. I told him about the hole we thought was in the roof of his mouth but he didn't seem too concerned, nor did he even see it! But I still think it may be there. They took more pictures of Hudson to use to show other parents because well his repair is just that awesome!!! Everyone who saw him that day was SO impressed with his lip repair. They always are. They mention how if they didn't know him there was no way anyone could tell he had a cleft lip. The color is perfect. Makes me so proud and happy. But also kind of sad that no trace of the face I first fell in love with is left behind. To anyone else of course. I can see his perfectly imperfect lips and smile and nose.

On to Nova who became a bit more interesting at her 6 month check up. Her pediatrician has always taken a long time to feel the soft spot on her head I've noticed at every appointment. I always take a feel for myself later and have tried to feel a soft spot that is not there. Well at her six month check up she finally mentioned it. She called it trigonocephaly. And showed me some pictures (bad idea) of other baby's heads that come to a point at the forehead. Although kept saying if that is what she has it is a mild case but it will need fixed ASAP. So she referred us to a neurosurgeon. Awesome right? Because a cleft isn't enough to deal with now my princess may need surgery on her skull! Not cool woman! So of course I researched once I got home but told my self not to worry until we met with the surgeon. Which was in January. It was a quick appointment where he just felt her head and mentioned sutures and premature closure and stuff like that... Apparently it was concerning enough to send her off to get a CT scan.

Two weeks later we went to Cardon's early one morning to have the CT done. And memories of Hudson's palate repair came back to me. Horrible times... Thankfully the wait was longer than the CT itself. It was just Nova, the nurse, and I in the x-ray room and she strapped, wrapped and strapped some more Nova up real tight on the table and I had to hold her little jaw so her head wouldn't move side to side. The machine was big and scary looking and the sound it made was creepy. It was only about 30 second long though thankfully. Nova did great and held still but towards the end her eyes got big and she started to squirm and I could tell she was getting scared. It was so sad!

We met with her surgeon a few hours later to go over the scans and this is what we found out:

It's called craniosynostosis. Premature closures of the sutures on the skull. If you didn't know, when babies are born they have a few different plates of their skull that are not fused together so the plates overlap when the baby is being born. (Arn't we just so thoughtfully made!?) Well one of her sutures, her metopic suture, fused shortly after she was born when normally that specific suture should close around nine months. This can cause the skull to become pointed in the font or the forehead, since babies skulls are also real flexible in their first 6 months. As the brain grows the skull expands and since the skull is not fussed it has room to grow... unless one or more of those sutures is closed already. It can cause too much pressure and other problems like eye sight and learning delays in the future. In Nova's case her metopic one has fussed and although her head has become very narrow in the front it is not sever enough to be considered trionocephaly and will NOT require surgery! Thank heavens!! We had a follow up with the surgeon two months later and he took one look (and feel) of her head and said he will not need to see her again!

But I also mentioned this to Hudson's surgeon, Dr. Beals, who also works with craniosynostosis patients. He looked at her and also agreed it is mild. They took pictures of her head at Hudson's appointment and he wants to see when she turns one to compare.

And that's that in a nutshell. Anti-climatic. And so we joke that she saw that Hudson was born with a cleft so she decided to close everything up early to prevent any clefts from happening. (I can)

And if that wasn't enough for us to deal with she has just been a PILL since the day she turned 5 months. She started waking up in the night every 2-3 hours and would not sleep unless she nurses. Even still she will wake up about 2 times in the night. It's rough. She hibernated the first 5 months of her life and now she's done sleeping I guess! Also around 3-4 months she started getting real bad diaper rashes. She constantly has one going on! And if she does have some clear buns it's only for a day or two. We also found out she has eczema! But it's kept under control when I keep her skin moisturized. It was a lot worse over the winter. And on top of all this we ALSO found out she is allergic to dairy! Come on girl! She kept getting a red (wait, what other color would it be?) rash all around her mouth occasionally and I noticed it once after she was drinking from Hudson's sippy cup of milk. I gave her another dairy product the next day and sure enough...a rash.

I'm thinking her diaper rashes and eczema is probably from me eating dairy too. But I seriously have no self control when it comes to what I eat! It's bad! If I can't change my diet for the sake of my own daughter then there is just no hope for any change in my diet ever! EVER!

On that note we are still breast feeding! Going strong! Well she is... I think I would have quit a months ago when I ended up with thrush which is the worst thing ever, EVER! And so far has been the worst part of nursing! BUT the little girl will take no bottle and no sippy! So I had no choice but to suffer through it. Once it was taken care of (after a freakin' month) I was able to enjoy nursing again. UNTIL I got it again for only a week this time. But I knew what it was right away so it didn't last nearly as long as the first time or as painful. Someone shoot me. My goal is to make it to a year and then I'd like to start weaning her soon after. Hopefully. I've just sacrificed so much to continue to breast feed! It really has not been more convenient for me than a bottle. More trouble than anything else. And I've asked myself many times if it really IS worth it sometimes. But I keep going for Nova, and not because breast milk is good for her but because she loves to nurse. And I'll admit I have some emotional attachment to it too. Although I'll be more than relieved when it's over I also think it will be hard for me when it ends. It's a love/hate relationship really. I'm pretty sure I could write a book on breast feeding now. I've seen it all.

Not to linger on all the negatives... she has also be SO enjoyable lately! She is a crazy ball of fire! She climbs on everything! She loves to bug Hudson and she's good at it. Always getting into is projects. She just yells right back at him when he gets mad. It's cute. She loves to jump! She claps. She dances. She's taking a few steps! She finally got a tooth at 10 months! A top one! Just like Hudson did! She now has just her four top teeth at 11 months. Funny kids. She loves to eat everything now! She loves to talk and is so loud! She is just so goofy and such a mama's girl!

And here are some pictures for your viewing pleasure.

Christmas Day 2013
Poor Curtis was sick with pneumonia and we didn't know it then. It's wasn't really an enjoyable Christmas for me and definitely for Curtis!

They sure loves each other!
They got the wagon for Christmas.

They love playing outside together! I just made them a splash pad out of PVC pipes that I know we'll have good times with this summer!!

Gilbert Temple open house!

Beautiful right? And I'm not talking about the sunset and Temple.

Hudson's 2nd birthday! 1.16.14
It was a present to me to see him blowing out his candle seeing that a year ago just blowing was impossible for him! 

Bowling for the Birthday Boy!

It's my party and I can cry if I want to!!

He rocks at opening presents! He was so interested in them unlike other two year olds I've seen!

Valentine Pictures

Easter Sunday 2014

 I love these kiddos!!
"Oh wow!" he always says.