Greetings from Childrens Hospital of Philadelphia

[Cbean]

Hey everyone. We had our appt with the neurologist yesterday and we are going full steam ahead. They admitted us and Emily and I are sharing half of a lovely suite here on what's chic-ly known as 7 West.

Emily had her first dose of ACTH and I don't know how the hell I am going to manage giving her these myself - big needle for a chubby little thigh. I'm going to go for classes today to learn how.

She's going to go for an MRI at 2:45pm today. They'll be sedating her, so I'm very nervous. The MRI is to rule out brain damage, so I'm nervous about that too.

So as you can see I have access to the computer, although I suspect I'm staying on too long. This is a wonderful place - truly amazing...I really feel we're at the best.

Here's hoping this works!

[Jessie]

We'll be thinking of you and Miss Emily . . . hope everything goes well. Keep us posted.



Jessie

[poojamom]

Hope things go well for you and Emily. You will be in our prayers.

[momofrussell]

Many hugs for you and Miss Emily!!!!! I hope all goes well!!! And , you'll get the hang of the shots no prob!

Luv ya!

A.

[andrewsmom]

I just hate it when they have to go through all this. I hope all goes well... let us know!!

[alisonzmom]

Hoping and praying that all goes well for your "Bug". You're both in my thoughts and prayers.

Barb

[MB]

Praying for you and the bug. Thanks for keeping us informed. I don't know if you realize how much we feel an ownership in Miss Emily's well being. Many, many good thoughts.

mb

[CC]

Awwww CHRISTINE, Hmmm not sure, seems I missed something Hope the admission doesn't mean there is anything serious going on...

HUGS to YOU and Little Ms. EM

CC ~

[LisaRI]

Hi Christine,

My daughter Kimberly had Infantile Spasms when she was 6 months old. She had MRI before she was admitted to hospital. She also was given the ACTH shot. I was told by Kimberly's Down syndrome ( Dr.Siegfried Pueschel that children with DS do better on the ACTH shot! Thank G*d my husband is a Fireman so he gave the shots to her. We put a bandaide on the leg that she got it so we would know which leg to use the next day. Kimberly got up during the night for a bottle, since the shot made her hungry. She did respond very well to the shot. We weaned her off after 8 or 9 weeks and was put on Depakote. I also had a visiting nurse come to my house to check her BP and her weight. I had to check her urine and stools.
That was a very sad time in my life. Kimberly also stopped smiling and was lethargic.

Please feel free to ask me any ??'s Today, Kimberly is 11 and doing very well! NO SEIZURES!!!


Lisa

[Emilysmom]

Thanks so much for taking the time to post to us Christine!! HUGS to you and little Emily! Looking forward to hearing some gooood news after the MRI. You are definitely in my thoughts and prayers,
Susan

[Valerie]

Wow, you're moving full speed ahead on this! So glad she's being taken care of, and things will be fine, soon!!! You'll get used to giving shots, and it'll be no big deal.

Here's hoping you're home soon, and all this will be behind you before you know it!

[Kristen]

Hope it continutes to go well. Shots are intimidating. I never had to give one to my child, but a little insluin shooter to my first ever shot patient who was totally used to it made my hands sweat just the same! Here's hoping that she is on the mend soon and feeling much better!

[Chester]

Best of luck, and Emily is in our prayers.

Dawn