Wednesday, June 9, 2010

Genetics, cardiologist, endochrinologists..... oh my

Long day, very long day. Started off with no sleep, then off to numerous Doctor appointments for Davy. I was nervous about how i was going to feed Davy on our long day away from the joey(her feeding machine). She really doesn't take the bottle so well and breast feeding hasn't been happening :( . Scott and I have fed her through a syringe for the first time on Sunday, so I went with that and a bottle for back up. The Doctor appointments went good. Nothing new really. This is how they went........
Genetics/Cranio facial- She is the right weight and age to get her lip and nose fix. We just need a clearance from Cardio. It will most likely happen 5 months(august-ish). She is back to gaining weight and growing taller. Yeah!!
Cardio- Heart is doing the same, which is good. We are on target for probably a heart fix when she is one. We will get an echo next appointment. They also cleared her for any surgeries.
Endocrine- All is good. She gave us a year prescription for 2 of her meds. The shot is a whole other story. We are still waiting to see if our insurance will even cover it. Really, don't even get me started on this topic. We will be doing labs next month to see how her thyroid is. And we are getting her a medic alert bracelet for her adrenal insufficiency(cortisol).

Unfortunately her last appointment took f o r e v e r, so i tried to feed her in the car(not while driving.) To make a long/frustrating story short, it did not go over well....at all. There were tears(from both of us) and hot water spilling all over me and the car. So I tried to rush home in traffic with my screaming baby. Good news is we all survived and I learned a valuable lesson.

1. ONLY 1 APPOINTMENT A DAY!
2. I will always schedule around her feedings, even if it means I have to wait a week.
3. I have to remember that Davy is a person and that means..................
I can drive in the carpool lane. I totally forgot this until I was almost home. Come on Ruth , get with the program.




13 comments:

Georgia said...

WOW.....I'm exhausted just from reading about yours and Davy's day. I think keeping appointments 1-a-day, and working around her feeding schedule sounds like a great idea!

And as for the carpool lane.....that is hysterical. I don't think I would have thought of it either. Glad you are both home safe and sound.

Her pictures are absolutely darling. Davy is darling. Since I say this so much, I am going to abbreviate. So when you see DID....you know what I mean.

Larsen Party 24/7 said...

first, super cute pics of harper! that's so funny about ollie, motivation is always the key isn't it?

second, davy's eyes look sooo pretty in these pics! and her hair is getting longer, nice! that's one of the hardest things, to drive with a crying baby in the car and you really can't do anything about it. so glad her doctor appts went pretty good!

Heather said...

I was totally laughing at the part where Davy is a person... and that you CAN use the carpool lane. Too funny! Just wait till you don't have anyone in the car, and try to use it (carpool lane) and then suddenly remember... "Oh yeah, no kids in car = Don't use the carpool lane" That's always fun. I'm constantly checking my mirrors for kids in car (even for just one). I forget all the time, and that's not easy with 4! I always have to count heads. 1,2,3.... wait... where's #4? Oh yeah, there he is! Well, having 3 appt. in one day sounds exhausting, to say having to go through with it all. I hope all goes well with the insurance. Good luck with that!

kristyn said...

I love how dark her hair is!! And is she really gonna be your fourth child with blue eyes?? Crazy recessive genes!! She's absolutely gorgeous with that dark hair and those vivid blues!!

Caitlin said...

Wow! What a day! I am so glad that she is doing so well, especially for surgery, that's pretty major stuff. I also totally cry with my babies in the car, I feel so helpless. You are allowed to forget things like your carpool memory lapse, you are working on no sleep and serious emotional exhaustion! I am sick over your insurance woes. I WILL NEVER understand how they can look at my daughter or your daughter and say no to things that are necessary. It is their LIFE for heavens sake! It's not like a car that needs something optional like the A/C fixed! Jerks. I just said some other bad words in my head and I feel bad. Kind of. Keep your head up and good luck with the potty training-by-big-brother method. Maybe we should try that...

Nancy said...

Great news all around as I see it! Davy looks amazing!! Can't get over her dark hair... SO adorable!

Beth said...

Thanks for the update and photos...she is such a cutie!

Carrie Anne said...

you are my hero! i seriously cannot get over how darling she is...those bright eyes & that smile! to die for!!! good luck with the insurance & if we need to start fundraising to pay for stuff, let's do it...and i am not even joking, okay?

amber buhrley said...

oh shoot. I usually forget I dont have a child in the car and cruise the carpool lane totally oblivious that I am driving solo. Sorry it was a frustrating day. Glad though that things are looking positive. And.....she looks so dang cute in those photos. How come I am so jealous of all your cute hair things.

ectocooler said...

so good to see you the other day and meet davy! such a good baby. next time maybe i can play some mario with the boys. take care, thinking of you guys.

<3
jordan

Janel said...

found my here from CJane's blog. I work in the enteral field (joey and G-tubes). if you do not have nor are aware, you can take your Joey with a back pack(they make one to fit the pump and the bag) and the pump should run on battery power for up to 18 hrs. The pack has a loop for hanging off the stroller, etc. I hope this helps? Also with the vomiting, you might want to ask your homecare provider about venting bags? it allows the air in the tummy to expel into the bag so there is less vomiting and more comfortable for feeds and the baby.

Lastly, my dear friend has a son born with a bi-lateral CP. He is now 17 and thriving! He is an awesome kid! He out grew all those issues from birth and made it thru multiple surgeries. His smile isn't perfect, but it is who he is and I can't imagine him any other way. He is even dating! I can say that kids were not hard on him. if they did have anything to say, he would tell them he got hit in the face with a puck(ice hockey player) and that the other guy looks worse. He uses humor to deflect the discomfort or curiosity of others.

It will be OK. Davy will be OK!

embot said...

Hi Ruth! I am Emily, Doug Chamberlain's wife. He and Scott have worked together. They were talking on the phone last week and we got to hear a little about Davy and then I found your blog through cjane.
Your whole family is just beautiful, especially little Davy.

Good luck with all that is ahead, you will be in our prayers!

Shurelle said...

Found your blog from cjane, and so glad I did.

Let the blogging world know if you need to start fundraising. We're here for you. I mean it.