New Hair!

No matter what length her hair is, she is so beautiful inside and out! Hard to believe we've cut a total of 18 inches in the last 3 months, but it is so much easier to manage! you my Char Char.

 

Count Your Blessings

The nurse just left and gave us great news...Charlee's lungs sound clear, the antibiotics are working! We are so grateful to all her Angels that pray for her daily! What a relief, finally good news came our way. Her sweet sister Cashlee s...ays to me " YEA I knew this would happen, I wished on the first star of the night and it worked" what a sweetheart she is. Since May '11 our beautiful Charlee has suffered a lot from so many things. Hundred's of tests done, poking, poking and more poking. She's lost all mobility, communication and eye sight. Just since the first of this month, we have watched her go from a 5 year old that could sit up and eat to being tube fed with no head or trunk control. She has lost so much, but her spirit has only gotten stronger. Through this all she still finds time to smile. I share her smile a lot to show no matter how hard life is, you can still find time to smile and count your blessings!!!

 

Home from the Hospital

I wanted to update you all on what's been happening with Charlee since we've been home from the hospital. She has been having 4-6 crying episodes a day. We have felt so helpless watching her cry and no matter what we'd do nothing comforted ...her. She's also been having lack of oxygen causing her face to turn colors, yellowish gray and gray blue. So heart wrenching. Friday she started running a fever, it got up to 104.3. She now has a pneumonia and a UTI. I know she is suffering but she is such a fighter and still finds the energy to smile! Please continue to pray she'll be comforted through this sickness and that it passes soon. Thank you!

Miracles still happen!

 

Sorry for the delay, but Charlee is HOME!!! We got home last night. We are still trying to get adjusted to life with this little sweeties feeds and routine, but we are all okay! We met a lot of great families during our stay at Primary's. This particular 11 year old boy named Seth and his family stole our hearts! He was in surgery just a day before Charlee getting a brain tumor removed. As w...e got to know this family through just a few short days we have grown to love them so much! I received a message from his mom today telling me they have gotten their miracle...the tumor is benign!!!! As tears filled my eyes and joy filled my heart for this wonderful family, I told Charlee the great news and she smiled her wonderful smile. I know they connected on a level none of us can understand! Miracles still happen! The power of prayer is real! I am so grateful for a Father in Heaven that loves us and carries us through our hard times. Thank you all for carrying me through the last 11 days through your kind words and prayers! And also to Seth and his family for showing me such great faith! Much love to you all!!

Going Home Smile!

 

So happy to finally be going home!

Day 9...

 

Day 9...yes we are still here! She is doing ok, but we are just trying to get her to tolerate her bolus feeds (faster non continuous). She had 2 crazy weird scary episodes yesterday from them. So we are slowing things down today and will try again tomorrow. If everything goes good we will possibly get to go home on Monday at the earliest. Thank Goodness we are so close to this amazing hospital with this incredible medical staff. A huge THANKS to them and all of you for your help, support and prayers.

Strong Little Angel..

 

 

Charlee is doing ok today, we are even getting a few smiles. It has been a very emotional week for me. Even with knowing her ability to swallow would eventually go, it hasn't made it any easier. Watching my baby go from a normal, active, s...mart, spunky little lady, to losing her ability to walk, talk, see and eat is harder than anything! So today enjoy what you have, for you never know when it will be taken from you! She really is a valiant spirit that is extremely special, anyone who meets her is truly touched by an Angel. I love you Charlee Bear!

Post Surgery..

 

Day 5 update. She has been in quite a bit of pain today, agitated and somewhat fussy. All in all she is proving once again how strong she is! So far she is tolerating her feeds great. I just pushed through her first dose of meds, easy peasy...! She's just awaiting a visit from her 2 favorite people, Jericho and Cashlee. I miss them too! We are now looking at being discharged on Friday at the earliest. Visitors welcome!
Love to you all!See More

Surgery...

 

Charlee went into surgery a lot later than planned, but she is now back in the room resting. It went good, she's just really sleepy still! She is such an amazingly strong little lady! We have a new plan in place to try a new seizure med that I'm very hopeful about. If all goes well with feeds, we will hopefully be discharged Thursday. Thank you all for your concern.

Prayers for our angel...

 

The results for Charlee's swallow study show her ability to swallow is gone, it is no loner safe for her to eat or drink by mouth. It showed she aspirates when she swallows. This breaks my heart! Food was one of the few joys left in her life, she loves to eat! They also have her hooked up for a constant EEG to monitor and figure out how to best control her increased seizures. They will be trying a few different seizure meds to see what works for her. Her G tube surgery is tomorrow at 3:30 pm. She is in a lot pain, crying a lot and very uncomfortable. Please pray she will be comforted in her time of need and that her surgery will be complication free. Thank you all! Much love, Catrina —

Little Angel...

 

 

Charlee is a little better today, now that she is getting hydrated. She is still having a lot of seizures. They just placed a NG Tube to start feedings. She is going in this afternoon for an upper GI study and on Monday to do her swallow te...st. (weekend is slowing us down) Once all that is done, they can schedule surgery to place her G Tube. Primary Children's will be our new home for at least 5 more days...Thank you for your continued prayers. Much love to you all!

Send Prayers...

Our sweet Charlee had to be admitted today. She is severely dehydrated and in need of a feeding tube. She's going on 3 days of not eating or drinking. This mono has really made her take a turn for the worse! She had a status seizure about 15 mins after she checked-in...she knows how to make an entrance! She had 10 Dr's/nurses by her side. Thank Goodness we were here! Please pray for her! Thank you!