Friday, October 28, 2011

{Home Sweet Home}


Yesterday We were finally given to go ahead to come home and begin to heal!  Angela is doing so much better since leaving the hospital -- maybe not so much physically but emotionally she is back to her happy little self.  Home is amazing -- it's amazing how when you are surrounded by love and comfort and when the threat of people constantly poking and prodding in taken away, how much healing can occur.


Angela came home with a central line and is on TPN for all of her calories.  We are trying to push feeds thought her j-tube into her small bowel but we are going to take it very slow, as to not make her belly angry.  We will keep pushing her rate higher and higher until we are at goal and then we can get that ugly line out of her chest!



This hospital stay was so difficult -- but we got through it and now that I've slept in my bed and had a nice shower I can say that I've once again have gained my perspective back.  Caring for a medically complex child can be so difficult, but I must say that there is so much beauty that can be found in it.  The ability to serve Angela on this intense level is very special.  I fully understand that not everyone could do it -- it blows my mind that God would choose Adam and I to meet her every need -- to give her love and a place in our family but also meet her needs medically.



We are ready to begin life again.  Angela and I hit the town today.  We headed back down to duPont for her six month Opthamology appointment, we did a little shopping, went to the grocery store and came back home for a meeting with the home infusion company.  Life is back to normal!


Angela rocked out her Opthamlogy appointment.  I'm not totally a fan of her Opthamologist, as she is the one who didn't want to give Angela glasses at her last appointment.  Her view is that patients who have cognitive issues and don't present as if they are even trying to look should not have glasses.  I totally disagree in a huge way.  Ok, so maybe some children will have no response to the increase in vision, but I'm sure there are a million who would.  Every child deserves the chance to see, no mater what there cognitive level. Angela was very attentive to the doctor,  waved hello and goodbye and even threw a little temper tantrum.  That's my girl.  Rest assured that Angela will get her main eye care from the Low Vision Clinic at the Eye Institute, but I still want to keep her at duPont in case we ever need anything more from them.


Thanks again for supporting us through this little bump in the road.  We are home and as you can see by these photos she is on the way to healing.


smalltown20something said...

I was so happy to see the title said Home Sweet Home! And you can tell that she is definitely feeling much better by those big smiles!

@eMSY said...

As always so blessed to read your unfolding story. Love you guys xxx

Jill said...

I think I know which eye dr you see at dupont...I wasn't crazy about her either and switched. We see Dr. Salvin now and LOVE him! Just a thought in case you were looking for someone new to try :) I'm so glad Angela is home where she belongs!!

Shari said...

So glad you are home. She looks happy and content.

Lisa Marie said...

so happy you are all home! prayers for continued healing... Love, the Walks :)

Karin W said...

hmmmm, we have the same problem with Estelle's ophthalmologist. You'd think these "educated" people would have a clue. Sadly, most of them don't, and I have to enlighten them. So happy to see her looking much better! xoxo from Estelle

Kyla said...

Yay! Home!! She looks much happier and healthier already. :)

Anonymous said...

Welcome home girls! I love Angela's hair, are you going to grow it out or keep it short?

So happy she is doing better.


Molly said...

So glad to see this smiling precious girl back at home! Praying your eye dr will see the light. HAHA It is amazing how much better I feel mentally when my vision is correct. It all works together...

Carrie said...

Really? There are professionals out there who do not feel like it matters if someone sees? That is ridiculous. How are you supposed to know someone's intelligence if they are not able to use all of their senses?
I did want to comment about feeding issues. If you can not find a local feeding therapist, I would check out Hershey's feeding clinic. I loathe CHOP's program. I have dealt with them for a few students and I just can not stand the team. Hershey's program is more flexible and the staff seems to be very easy to get ahold of by phone or email. It is a hike, but honestly I think it is totally worth it.