February 3 - 9

February 3 - We start the morning getting ready for church. Unfortunately, we don't plan on actually going to Sunday School or staying for church. We are worried about Shayleigh being around other people during flu season, plus she has the tube, she can't walk and would require one on one care which really isn't fair to the preschool department. Of course we know that they wouldn't mind, but we don't want to put them in that position. Our main goal is to stop by and get in front of our church family and thank them for the overwhelming love and support they have shown us. We know that many of our church family are eager to at least get a good look at our little trooper! For some reason, Shayleigh won't lift her head to even look at people..normally she is all about it!! We think it is because she was tired. After we have our little "say" we head back home. We take a nap and spend the rest of the day being silly!! My mom makes it back this evening to help me get Shayleigh ready for her doctors appointment tomorrow and for first week of therapy Tuesday- Thursday.


February  4 - Nick's 31 Birthday!! Shayleigh has a doctors appointment with her regular pediatrician. Dr A is wonderful and it is nice to see her face to face as opposed to text or phone calls. We come up with a plan to have Shayleigh down to feedings every 3 hours by the beginning of the next week. Shayleigh gets a clean bill of health and her weight looks great! Mom and I decide that we want to take Shayleigh to Chick-Fil-A for lunch. She LOVES Chick-Fil-A. All is well until we put the food in front of her and she has a meltdown. Mommy ends up super frustrated and we end up packing up quickly and heading back home. This evening, Nick and I go out to celebrate his birthday and leave Shayleigh with my Mom. I have to teach my Mom how to manage feedings and medicines. She picks up on it super quick and is a pro at giving medicine and starting the feds. It is so nice not to have to worry about Shayleigh while we are gone. I always know she is in good hands with my Mom. I mean, come on now, she raised me and I am awesome!! HAHA JK. As always, thank GOODNESS for my mom! We grab a quick bite to eat and head to the movies to see Lincoln- which surprisingly was a good movie. After the movie, we run to Wal-Mart to get the few things we were supposed to get while out this afternoon. We make it home and all is well on the homefront!


February 5 - Today is Shayleigh's first day of outpatient therapy! We start at 8:30 am and Shayleigh will have physical, occupational and speech in 30 minute increments back to back. Today was an observation day, so all the therapists (physical, occupational and speech) gather and just observe her, throw ideas out there and basically get a game plan going regarding therapy. Shayleigh doesn't perform much, but she doesn't cry or act upset either. So we are pleased. We are excited and impressed with out therapists! All 3 are women and they are really eager to start working with her. After therapy, we head home and Shayleigh eats some spaghetti O's. We take a nap and after we get up from our nap we are playing on the floor and Mom and I think that Shayleigh says Mama! Of course, she continues to throw herself around and when she said it she was being silly pressing her face in the carpet. She is so proud of herself when she throws herself around she just smiles and grins! I get so nervous and just try to prevent her from hurting herself. She then proceeds to say Dada. It is very garbled, but at least she attempts! She also discovers her tongue and has lots of fun sticking it out and playing with it. Nick comes home and he and Shayleigh play for a while before it is bedtime for our pumpkin.


February 6 - Our second day of therapy starts off at 1:00. The therapists are working with her, but are still tag teaming her and observing as well. She does what they ask, but doesn't go above and beyond and doesn't do some things that we KNOW she can do. She just seems to perform better for us. We are hoping that the more she works with her new therapists the more she will feel at home with them and perform for them like she does for us!  Once we leave therapy we head home. Shayleigh continues to be more and more verbal. She says hey. We can catch words here and there, but mostly she just babbles. But, we will definitely take ANY noise she makes!! She ate a ton of food today! AND she drank tonight!! She actually took the cup herself and put it to her lips and drank!! We were soooooooo excited!! We have been telling her if she will eat and drink more we can take her tube out!She also took 1-2 steps by herself ( I don't think she actually realized it, but...). We start her feedings way late tonight because she ate sooooo much today!


February 7 -  Shayleigh has a TERRIBLE night! She cries most of the night. We think it might be because of her belly, but we really aren't sure. We are worried how she will do today at therapy. Her therapy is supposed to start at 8:30, but they called last night and asked if we can start at 8:00 instead. Fine with me, but since we had such a bad night...I am worried how therapy will go. Needless to say, therapy doesn't go well. She does well for about 30 minutes, but then spends the rest of the time crying and not performing. We end up just ending therapy early and head home. AS SOON as we get to the car, Shayleigh stops crying and starts smiling and giggling! Silly girl! She is also jumping! She likes for someone to hold her hands and she goes to town jumping like a jumping bean!! She has continued to eat and drink like a champ! NOTHING is safe around her..she is eating EVERYTHING we put in front of her! She is drinking a ton too! We are sooo very excited!! We are thinking that she is ready to get her  tube out and I plan to call her Dr soon to see if we can go ahead and get it out ASAP. I just want to wait a little longer. We get her ready for bed and put her down when all the sudden she starts screaming. I run into the room and she is sitting up in bed with her NG tube hanging out of her nose. Poor baby. She was ready for it out, but she scared the mess out of herself!! lol. The NG tube is a total and complete loss. We pull the tape off and while she cries we reassure her that we aren't putting the tube back in. She completely stops crying! Poor sweet baby! They told us at LSU that kids who have NG tubes typically pull them when they are ready! I think she might have been ready before we left Baylor, hence her pulling her tube Tuesday before we left, but they wouldn't let us leave it out. She wasn't eating as well or drinking as well though. We are hoping that we NEVER have to deal with this NG tube EVER again!!


February 8 -  I call the pediatrican's office to let them know that Shayleigh pulled her tube. Basically, I tell them that I am not planning on putting it back in, but I will if they think it is best. One of the many perks of being home, I KNEW Dr A would be on board with my plan and agrees that she's ready to have it out! Shayleigh continues to eat and drink! We discontinue ALL of her meds except for her bromocriptine. Now that she isn't being gorged with formula (which she NEVER had in her entire life until December) she doesn't need any of the medicine!! Now we have our very own home pharmacy. LOL. A month's supply of medication and formula that we only used for a little over a week! It is so obvious that Shayleigh is SOOO much happier without her NG tube! She took about 2 good steps by herself today! She was walking between Nick and I. Of course, we don't know if she actually realized she did it by herself until we started cheering! Then she smiled and grinned real big! She is so cute when she gets excited and realizes how proud we are and what a big girl she is!! 


February 9 -  My brother, sis in law and my nephew Jackson come up for a visit. Shayleigh is SOOO excited to see her cousin! She tries to put him on her lap and hold him. She even tries to pick him up and carry him! This is definitely our GIRL coming back!! She LOVES her cousins and she LOVES babies!! She is enjoying it and having a blast, but poor Jackson isn't. lol. We spend the day just hanging out around the house. Shayleigh keeps eating EVERYTHING in sight and drinking tons of juice. I am really not a fan of straight juice and I normally cut the juice with water, but at this point...we just want her eating and drinking. Shayleigh scoots on the floor today which she hasn't done before. Before Beau and Libbie leave we go out to eat for dinner. Shayleigh says I love you quite a few times. Of course, as always it is garbled, but it was definitely I Love you! All in all, it was a GREAT day!!