Tuesday, December 14, 2010

Cheers

Carly has made some big strides in the last few weeks, and she still continues to have some challenges.  The good news starts with her shunt, which continues to work as it should. It is a relief to have it last longer than the last few, and hopefully it keeps it up. The other great news is that Carly has finally learned how to drink from a bottle and she was officially weened from nursing yesterday.  Until recently the only way Carly could take in any fluid was from nursing. We tried every bottle and sippy cup that we could find but never found anything that Carly would accept.  Everything came together about six weeks ago when Christa finally found the right bottle and method, and Carly was finally ready to make the big step. This is a giant step for Carly, and it makes it possible for others (including me) to help manage Carly’s fluid intake. It is something that we are very thankful for.

The biggest challenge right now continues to be seizures.  Carly started on a seizure medication about four weeks ago and we have slowly increased the dose. Her seizures did drop from six a day to two a day, but now she is sticking around 2-3 a day and the medication seems to make Carly more sleepy and agitated at this dose.  We will see how things go over the next few days, but it is looking like we will need to move onto another medication. The other issue that Carly is dealing with is a round of pneumonia.  It is not serious and definitely much less concerning than the seizures, but she is pretty congested and had several nights when she had trouble sleeping.  It seems to be clearing up now, and in the grand scheme of things it is a minor issue. One thing is for sure, she is a very strong little girl.

Love, Brad

9 comments:

Mindy said...

Wishing Carly a quick recovery from sickness. She'll fight it off like no other. And Brad, how nice that you can give Carly a bottle! Great little moments to bond even more. Cheers to Carly and the good things that are coming her and your way. Much love! Merry Christmas!

Anonymous said...

Congratulations on a big step for Carly! Just don't be doctoring her formula during the holidays. Hope you have a wonderful Christmas and New Year.
Love,
Greg and Gail

Laurel said...

It's wonderful that Carly is taking a bottle. I'm sorry to hear that she has pneumonia on top of seizures. Hopefully the pneumonia will pass and the seizures will subside. Wishing all of you a peaceful Christmas.
Love,
Laurel

Marybeth said...

Very glad that the shunt is functioning as it should! I was just thinking today about how hard it must be for her to still be nursing only -- very happy for all of you to hear that she is now able to take a bottle! Carly is a tough little cookie for sure & she will come out of everything a happy, healthy little girl.

piper said...

Congrats on the big step with Carly! She is so strong. It's amazing. Love you guys!
xo

Katy Leigh said...

just stopped by to share some holiday love with you all. happy to read the good news on carly taking the bottle - go carly! i hope the pneumonia clears up and we continue to pray for a stop to the seizures. have a very merry merry christmas and hope to see you all again soon. much love!

Gal said...

Such great updates, of course except for the pneumonia and seizures. Carly is such an amazing girl - she really continues to amaze me with every step she takes and everything she overcomes. That is HUGE about her taking a bottle - go Carly! You guys are such a special family. I miss you!

Lani said...

all amazing news (except the pneumonia of course) - but glad to hear about the weening from nursing. huge step!!! miss and love you guys! xo

Anonymous said...

congrats on the milestone! hope Carly's feeling a little better and that you all had a nice Christmas. sending you warm thoughts and prayers always,
Sheila & Keith