Reagan has still been of the vent. A total of 4 weeks now! Her lab work looked good. We will see what they think when we go back in January!
Merry Christmas to everyone. I am terrible and didn't get around to Christmas cards this year. I will do better next year!

Friends!

Nothing like a good friend to cheer you up! Reagan has her friends, Chloe and Josie over right now! Chloe has been reading her books and Josie is watching Tinkerbell with her! She loves them. She feels like such a big girl.
She has been off of her ventilator completely for 11 days! Praise God! Can you even believe it? We are thrilled. We have to take her to our local hosp tomorrow to have some blood work and make sure her levels are as they should be. We are praying that all is well and she is breathing well enough without the vent!
Merry CHRISTmas!!!!

Jeri Ann

Pictures galore!!!

Reagan had a wonderful day yesterday. Praise the Lord. She did alot of talking and smiling. We were going to try to go to church today on this cold cold day, but the choo choo called and I was not going to try to do it all by myself. But, we can praise God here for all of the wonderful things He has done!

Reagan has discovered a new movie. High School Musical. She loves it. I guess all the singing. And the fact that Brennen loves it. I think she watched it 3 times yesterday!

I couldn't decide which pictures to post, so I will just give you a bunch! Enjoy!

So Long...

Sorry it has been so long since the last update. Always something to do! We had to make a last minute trip to Children's on Monday. Our primary nurse from the hosp called us on Friday and ask that we be at the hosp Monday morning at 8 am for Reagan to have a scope to see if she had any scar tissue! So, off we go for Reagan to be put to sleep again. Nerve wracking but, praise God, she did very good and they did have to remove scar tissue from around her stoma hole. She had two pieces the size of grapes blocking her airway! That would explain the constant desating! They kept her overnight and we got to come on Tues. afternoon.
We are now able to hear her sweet voice and are very thankful!!!! She has not been able to talk to us in months! She would get frustrated, we would get frustrated, it just was not good for anyone! Now she is able to wear her passy muir valve (Mr. Talky as we call it) and we can understand her perfectly. God is so good! Even on my bad days I know He is watching over her.
She has been staying off of her vent during the day! She is still not tolerating the trach collar at night, so that has not been any fun. It is just too noisy! I say you can hear it next door it is so loud! Maybe soon she will start tolerating it so she can be closer to getting off of the vent. She is so smart! She will ask for you to put her back on her purple ventilator! She will cry and hold her breath until you do!
If she stays healthy, and we are praying that she does, she will not have to go back to the hosp until January.
She is still moving her left arm and legs pretty good. She doesn't have any strength back yet so instead of ordering a power wheel chair we went to get measured for a bigger stroller today. She and all of her vent stuff have grown and she hardly fits in her stroller anymore. They said it could take 3 months for her to get it! Glad we are not in a hurry!!! We are praying the she just continues to get stronger and stronger.
Big brother is doing very good and is cute as a button. I will try to put pictures of the two of them the next time I update. Hopefully before next year! Thanks for the thoughts and prayers!

Reagan's Mommy

Better Days!

I hate to write and not say good things, but Reagan has just not been herself lately. She is not smiling much and she absolutely hates being off of her vent. She is happier when she is plugged up and the vent is doing everything for her. We have tried weaning her off at night but she does not tolerate it well. We end up hooking her back up so she can rest and us too! Please pray for better days!

Smiles

Yesterday was a good day. Reagan smiled alot yesterday. So did Brennen. I missed alot of it while I was at the wonderful WalMart. Allen put Reagan in the infant swing and she loved it. He took a picture of her smiling. She also got to play in the sandbox. She got to be a kid yesterday. She was actually in the mood. Sometimes she will not tolerate much.
Brennen loved riding his bike yesterday. He was out of school for Columbus day so we decided to have some "Brennen time". He have tried to get him to ride his back for months now and he has never been interested. Yesterday was different. We ask if he wanted to ride his bike to visit a little girl in the neighborhood, so he was all for it. Girl Crazy at such a young age!!!!! So, thanks for the prayers, maybe today will be just as good as yesterday!
Grayson McEvoy had some of his tests yesterday and received a good report. He will have an MRI Wed. so please remember him in your prayers.

Blessings!

Ready to hear something really huge? Reagan can come off of her vent some. She had her sleep study off of the vent and did wonderful all night, praise God! The Dr. came in and said let's unplug her! Huge. She has been off all day today and did very good until about 8:00 and she started getting really tired and desating so we hooked her back up so she can rest well. We were not expecting that at all. Maybe weaning her breath rate and pressure support, but never take her off! We never know what God has in store for us! His blessings are all around us everyday! Thanks to the wonderful Nurses and RT's for taking such good care of Reagan during our stay at the hosp. You are great.
Reagan still needs your prayers. She has reflux in her kidneys, I guess is the best way to describe it. She is having to take a daily maintenance antibiotic to try to prevent infection in her kidneys. They are going to test it again in January and see if it has improved. We are praying that it has, but if not, she will need to have surgery to reroute things into her bladder muscle. I know I am not explaining things very well, but bottom line is she is not draining her bladder and urine is going up instead of down causing urinary tract infections!
Please pray for Grayson McEvoy! Our friend in Utah. He is going to be going through a lot next week and needs our prayers. You can check out his website at www.provomiracles.com He is the cutest little guy and up until a few weeks ago just smiles about everything! We love him and his family dearly!
Thanks for the prayers! Have a blessed weekend!

McBride's