February 23- 24

February 23 - Shayleigh woke up this morning around 0600 so I brought her to our bed in hopes that she would go back to sleep. It wasn't happening. What happened is that she started tickling her Daddy! This is the first time she has initiated tickling so we were...tickled.  She spent a lot of time outside today. My parents are building a fence around their RV (which is parked across the street from our house) for their dogs so Shayleigh was excited to "help" them.  While we were outside she found her little tricycle on the front porch and decided today was the day to ride it.  We had tried a few times before this nightmare to ride the tricycle, but she really wasn't that interested. We took her to the road on the side of our house and she rode her tricycle! Granted she was only able to push the pedals about 3-4 times, but it shows us that she is learning new stuff as well as remembering all the old stuff!! YAY!! She also has decided that she would open and shut the front door. I was sitting on the couch as she is opening and shutting the door and she opens it and starts taking off out the door. Mind you, we have a huge stepdown at our front door to the outside. I hustled up and I barely caught her before she took off!! I had no jacket and just slippers on. She had to walk/run/giggle/grin/act silly almost all the way down our driveway. We have a pretty long driveway too. She gets sooo excited her poor little legs just can't keep up with her sometimes. Shayleigh has always enjoyed bath time. Unfortunately, it has been somewhat of a struggle since surgery. At Baylor, they only had a shower with a shower chair and she HATED it. Once we got home I thought she would just love being able to take baths again. Unfortunately mommy was WAY off. We actually went a few days with her only taking baths everyother day (we did sponge baths on the "off" days) because it was such a traumatic experience for her and such a struggle. About 2 weeks after being home she decided that she enjoyed baths again so we were able to bathe every night just like normal. Tonight was the FIRST night that she refused to get out of the bathtub and we had to set an alarm to get her out. (The alarm works like a charm too!!) This might seem like an inconvinence to some, but for us it is just validation that our little girl is in their and that she is coming back! God is SOOOO good!!


February 24 -  Shayleighs favorite word to say? "MAMA" Absolute music to my ears!! She also said "I want Mama." She has always been a Mommy's girl because I am home with her the most. I haven't hardly left her side since December so she is even more so. I am worried about how she is going to do when baby brother gets here...but that worry is for another day. She is shaking her head yes and no much more than she was!! She knows what she wants and she isn't afraid to tell you by shaking her head yes or no. Her little independent personality is definitely coming back and she has a mind of her own!! She also is spending much more time wanting to play and spends most of her time playing with her baby dolls. She got a high chair for Christmas and has been having loads of fun putting her baby in and taking the tray on and off. She also wants to play in her room by herself. She was in her room and Nick and I were in the living room and of course nervous Mommy decided one of us needed to be in her room with her. Nick got up and went to her door to ask her if he could come in her room and play and she said "no." Haha. Of course, she plays "by herself" with Mommy basically hiding around the door making sure she doesn't hurt herself. It is nice that she is doing normal 2 year old things and that she is able to keep herself occupied without me constantly having to entertain her. It makes me kinda sad and worried so instead of using her "play time" to get things done I hover in the background. She has been giving tight squeezing hugs and today she smacked her lips like she was going to kiss someone. She also gave a kiss bye-bye. She ate some red beans and rice off her spoon with her right hand! The spoon has really been hit or miss, but I always make sure it is laid by her plate. She is so independent she doesn't want anyone feeding her, but if I put food on the spoon and put it in her hand sometimes she will eat off of it and then remember oh yeah, I have a spoon and not just my hands. She went on 3 wagon rides this afternoon (she might be getting spoiled, but who cares?!?!).  She also went down her slide, swung on her swing and jumped on her trampoline (we had to hold her hands, but she did jump). During bathtime tonight, she was rolling over in the bathtub laying on her stomach. She LOVES water and except for her time at Baylor has absolutely NO FEAR when it comes to water. This is good and bad for Mommy and Daddy. She gets her love of water from my daddy and my Maw-Maw - they both should have had fins and not legs. lol We had to set an alarm again tonight to get her out of the bathtub. Silly girl. After her bath, Nick brought her to her room so we could get her dressed and she reached up to me and just hugged me and squeezed me for so long- it was priceless and precious! She wouldn't hardly let me go and I just loved it. Even after all this, I can honestly say God has blessed us with an amazing little girl and my heart just bursts with love for her more and more everyday!!

February 15-22

February 15 - My Mom went back home for a few days. She will be coming back on Monday for Shayleigh's doctor appointment. Shayleigh wore me out today. She wanted to be held and didn't want to do much of anything. I think we were both exhausted from a busy week of therapy. We only have so much to do in the house that she can actually do that it is hard to be creative and think of things to do. So sometimes the walls just feel like they are closing in on us. The nasty yucky winter weather doesn't help us either. Needless to say, we were both super excited for Daddy to get home!


February 16 - For the first time since we have been home, Shayleigh slept all night by herself! Yay for Mommy! When she got up, we went to a little restaurant in town for a pancake breakfast to benefit the local dance studio. Shayleigh ate at least 3 pancakes!! She was the life of the restaurant. She smiled and grinned and babbled. Apparently, she was a huge hit and everyone was talking about her after we left! As long as that brings awareness to her situation and causes people to pray for her we don't care!! She took 4 steps by herself today! She threw a ball with her right hand! She gave mommy kisses- mainly open mouthed, but I don't care!


February 17 - Shayleigh went to sleep by herself without anyone laying in the bed with her and she slept all night!  We had to get out of the house so we went and grabbed some food. Shayleigh told her Daddy "no." We normally wouldn't allow that, but at this point any talk is good talk. We are going to have some serious problems fixing all these bad habits. LOL One of my old coworkers and her daughter came by for a playdate. After they left, her cousin also came over for a playdate. Shayleigh had a good time. She was tired after all the excitement from the day! She has learned how to crawl in and out of her big girl bed by herself! She is also much more interested in playing with things. She is rocking her baby doll. She goes and sits at her desk, opens it and will get stuff out, but can't quite remember how to do anything with the colors or coloring books. Of course, Miss Independent doesn't let mommy help her often, but when she lets me she will color with help for a few minutes.


February 18-  Shayleigh had a restless night. I ended up in the bed with her around 0200 and she woke up around 0630. My mom came in today to go to her doctors appointment and to stay the week and help me with therapy and everything else. Have I mentioned how amazing my Mom is?!?! We had our two week check up with our pediatricain today. Dr A was very pleased with Shayleigh's progress! She continues to maintain her weight at 25 pounds! She is a little string bean! She smiled and babbled for Dr. A so we were excited about that. Dr A agreed that we could discontinue home health! YAY! Another step in the right direction! I only really wanted home health just in case her NG tube came out. I was NOT putting it back in! We are going to have check ups with Dr A every 2 weeks. Hopefully by her next 2 week appointment we will be walking. After our appointment we went to Chick-Fil-A (her favorite restaurant). I wanted to try it again and see how she would do. She had a BLAST! She was sooo cute! She hollared happily at the top of her lungs. LOL. We had to keep trying to shush her (although we really wanted to cheer)! She hasn't wanted to do much walking today, until Daddy came home! She walked between us for about 10 minutes. Most of the time she did it by herself with hardly any assistance. Everytime she walked without us we cheered. So she smiled and grinned and giggled and tried again! She is so incredibly cute!! She ate a ton today! We have been having to put miralax in her cup to help her go to the bathroom. She has never been on formula before, so these past few months of being on formula messed up her stomach soooo bad. Hence all the medicines she was on for her belly (which we were able to discontinue once we stopped the formula). She didn't really want to drink much today, but she had a good dirty diaper! YAY for dirty diapers! We are hoping this means that her digestive system is getting back to normal after all that yucky formula! Hopefully, we can discontinue the miralax, but only time will tell.


February 19- Shayleigh gave Mommy zerberts today (some people call them raspberries)!! We were sooo excited because we have been worried that she isn't able to blow.Her balance is getting much better. We still have a way to go, but it is so wonderful to see progress!! She was able to spin around by herself with no help! AND she also marched by herself!! Her legs came up real high too!  We just cheer and cheer when she does stuff and she grins and does it again! It is absolutely adorable!! She went to bed by herself, which is a big deal! We are so proud of our little trooper!!


February 20 -  Shayleigh had another great day in therapy!  We keep getting wonderful updates from all the therapists! She is pointing out pictures in her book for speech therapy. Occupational therapy came out today for our update and was super excited about how well she did today!! Although she performs better for us at home, she has at least started performing for them at therapy! Poor baby, therapy really does wipe her out! Playing is hard work!! She has really seemed to bond to her therapists. Especially speech. We think she is really close to having a major breakthrough!! I can't wait until it happens! We finally had Christmas with Nick's parents tonight (nothing like Christmas in February). I am so greatful that everyone was ready and willing to wait on us to get home and get settled. For some reason, Mommy and Daddy had to open most of her gifts. She wasn't interested in opening them which is crazy because once we got home we started opening presents we received before we left home and she went to town!! Anyway, her favorite present was a "real" vacuum cleaner. She vacuumed and vacuumed. It was so cute! AND not only that she was able to use just the vacuum cleaner to help her move around the house. Just goes to show how close we are to a major breakthrough!! Yall please, please keep praying!!


February 21 - Shayleigh went to bed all by herself last night. I was able to actually lay her in the bed and walk out of the room with no screaming and crying. YAY!! Therapy went well today! Everyday is so encouraging for us and for the therapists. She is doing so well!! After therapy, we had to hit Krogers for groceries and couponing. Shayleigh did great while we shopped- she loves being out and doing "normal" things. In order for me to be able to stay home more and not stretch our budget, I coupon, so before all this started we would coupon once a week. We would hit Walgreens, Krogers and CVS. She loved helping Mommy coupon!! After Kroger, we came home for a nap before heading to my OB appointment. While we were laying down for a nap, Shayleigh said Mama, Nonnie, and Nikki. She knows how to try to get out of naptime. HAHA She also "hollared". It is super cute when she hollars! I am not looking forward to giving up our naptime aka mommy's snuggle time. It is my favorite time of the day!!  We went to my 32 week check up and Shayleigh got to "see" baby brother in Mommy's belly. We were finally able to get a really good "boy" shot of baby brother!! YAY! Shayleigh fell asleep by herself again tonight! Our routine before surgery was to rock and sing 5 songs. Goodness forbid mommy mess up the song line up too! We have to sing Amazing Grace, The Old Rugged Cross, Twinkle Twinkle, Jingle Bells and Jesus Loves Shayleigh. I sang her line up to her tonight and just kept rocking and when I went to lay her in her bed and she didn't even wake up! I know I keep mentioning this, but it really is a big deal. Shayleigh has always been pretty good about going to sleep so this screaming and crying and someone having to sleep with her isn't normal for her at all. Just one more step in the right direction!!


February 22 -  Shayleigh got on the floor this morning and "beat up" PawPaw. It was hilarious! Mainly because it wasn't me-- like it was the other day! My parents took us out to eat pizza for lunch today per Shayleigh's request (apparently she was super excited when pizza was mentioned. I was busy trying to figure out what to cook for lunch).  We were sitting at the table and PawPaw was feeding Shayleigh some dessert pizza and apparently wasn't going fast enough for her liking so she said "a bite."!! It was loud and she also threw her hands up to get his attention. She also saw my dad take a bite of the dessert pizza and so she scooted closer to him in her high chair and made a loud noise and threw her hands up in the air again! It was super cute and soooooo like our sassy girl!! She danced today for the first time since surgery! She swayed her hips and moved her arms and did some kind of "windmill" thing. She was able to pick the things we asked for out of her lentils and hand them to us. She wasn't doing that at Baylor. I actually have tried not to use the lentils at home because they are so messy, but she found them and wanted them. Shayleigh played with her baby dolls today. She drew a ton of pictures on her etch a sketch and she even erased them herself without me helping her!! Although she is using her hands to eat, I have still been putting silverware on the table with hopes that she will pick it up and use it. I haven't pushed the issue, I just put it there hoping seeing it will jog her memory. Tonight, while we were sitting down eating dinner she picked up her spoon with her right hand and used it!! We were so excited!! We cheered and cheered! I wish ya'll could see her face when we cheer for her! I am going to try to get it on video!!

2/10-2/14

February 10 - Shayleigh crawled today!! Now she can be more mobile without us having to help her! Great news for our little Miss Independent! She also walked back and forth between Nick and I and did well!


February 11 - Shayleigh's sitter called to check on Shayleigh and invite us to the Valentines Party she was having for the kids on Wednesday. I had been planning on bringing Shayleigh by the house to visit with GiGi and the kids, but we have not had an opportunity to do that yet. I am excited for Wednesday. I think Shayleigh will be super excited and really enjoy being around her friends again! We also had our first playdate today with two sisters from Gigi's. One of Shayleigh's friends is a few months older than she is and the other one is only 10 months old. As soon as the 10 month old was brought in Shayleigh started babbling. She was sooo excited to see her and she kept reaching for her to get her out of her carseat and hold her. Her friends only stayed for about 1 1/2 hours because Shayleigh got so worn out, but she had such a good time!


February 12 - Shayleigh woke up this morning a little whiny and clingy to Mommy. We start therapy at 8:30 and I knew that it would be a waste of therapy if I went back with her so I sent her by herself. It was super hard! They don't have a window where I can see her and so I have to rely on each of her therapists to come out and tell us how she did and what they worked on so we can work on it too. I hate sitting in the waiting room, but from day one I told them that if it would help her I would do it!! I don't in anyway want to impede on her progress. All of her therapists were excited about how well she did today! We talked with the therapists and we all decided that I would send her back by herself again tomorrow and see how she does.


February 13 - Shayleigh had another good day at therapy! She was walking in her walker with PT and they were playing with a balloon and PT told us she said "I got it" twice!! After therapy we headed to Gigi's to see all her friends. Gigi has a long driveway and her grandson saw us coming up and said "Shayleigh is driving up our driveway." I pulled up to the house and there were 5 faces pressed into the bay windows of Gigi's kitchen! Two of Gigi's grandkids ran out to meet us. All the kids were soooo excited to see Shayleigh. We walked in and all the kids were grabbing at her and trying to hug and kiss her! It was the sweetest thing ever!! The kids just kept touching her, hugging her, and kissing her. It was a wonderful visit and Shayleigh thoroughly enjoyed herself!


February 14 - Best day of therapy yet! ALL the therapists bragged on how well she did! Speech put a mirror in the room with her and Shayleigh just babbled and babbled! She LOVES looking at herself in the mirror! We talked with each of her therapists after therapy and we all came to the conclusion that she does better when she does therapy one on one with her therapists. It stinks for Mommy, but we are willing to do anything to help Shayleigh. She has really bonded with her therapists. It is hard sitting in the waiting room and it makes me sad cause I like to watch and unfortunately they don't have a way for me to watch. But, if it helps her I can suck it up. All of her therapists come out and tell me what they did during their 30 minutes with her and give me homework. I am so proud of my girl!! She is such a trooper! Daddy also took us out for a Valentine's Day dinner to Pietro's on the boardwalk! Shayleigh ate a ton of food and was soooo excited to be out of the house doing something "normal." She passed out in the car on the way home. All in all, another good day for our Shayleigh Grace!

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!!

January 30- February 2

January 30 - My dad catches a one way flight to Dallas in order to "chaffeur" us home. I run around trying to get all Shayleigh's prescriptions filled. You can't even imagine all the drama we had trying to get her prescriptions filled. I also spend a lot of time making sure everything is packed and making sure everything is lined up for us at home (home health, medical supplies, dr appointments..etc). Today is Shayleigh's last round of therapy at Baylor. She does AMAZING!! PT even mentions that in a few days or a week he would suggest we try the walker or a gait belt!! She really shows off for all therapies! It was such a good way to end our time at Baylor! She was so proud of herself at the end of the day too! She has been smiling so much more! She still isn't talking and isn't making much if any noise, but the smiling and the giggling and laughing is music to our ears! We know we will get there!


January 31 - We leave the hospital around 11 headed home! We have to make a stop at CVS to pick up Shayleigh's last 2 prescriptions. Shayleigh has a meltdown about 15-20 minutes before we stop for lunch. I can't get her to quit screaming and crying and she keeps trying to come out of her carseat reaching for me. We stop at Cracker Barrell in Tyler to give her a break and thank goodness it is right off the interstate. Shayleigh looks at the food, but when I try to feed her she won't eat anything and just starts crying. My dad takes her to walk around the store while my mom and I eat our lunch. Have I mentioned lately that my parents are AMAZING/the BEST?!?! I realize during Shayleigh's slight public meltdown, that I am out of the "bubble" that has been my life for the past 41 days. And it is scary & surreal. We load back up into the car and Shayleigh watches Calliou on the ride home. She tries to cry or whine a little, but I pretend to be asleep and when she sees me "asleep" she calms right down. LOL. Poor kiddo. We pull up into our driveway and Shayleigh sees her daddy and just starts grinning, kicking and bucking to get out of her carseat! Nick gets her out of the car and gets me prepared for my surprise inside! Not only is the house spotless (thanks to Nick and his family) I also have a beautiful flower arrangment! As awesome as a clean house is, it isn't the biggest surprise! Our wonderful friends have decorated Shayleigh's room! The room is amazing and looks awesome! Our friends and Nick worked super hard to get it ready! The walls are painted light pink. They switched out the double bed we had in there planning to use, to Nick's twin bed he had growing up. They painted her furniture white and even spray painted her drawer handles pink to match her bedding! They made pillows! They made cute decorations! And she has a monogrammed pillow and sheet. I still smile EVERY SINGLE TIME I walk into the room! They didn't stop there! They also painted baby brothers room! They monogrammed his crib sheet! They even decorated the walls with paintings! We actually switched the kiddos rooms so they even moved all the clothes in the drawers and closet from one room to the other! (that in itself is a feat, especially for Shayleigh's closet!!) It looks amazing! It makes me so proud to have amazing family and friends! Nick and I have felt so blessed from day one and having friends and family coming together to help us is so amazing! We have the best friends and family!


February 1 - My first day by myself at home with Shayleigh. My parents leave around 10am to run to Lake Charles to take my 95 year old Memaw to her doctors appointment. My parents are super nervous about leaving me. I go ahead and get all her medicines ready for the day and try to plan for the day knowing that it will be a long day and I will need to make sure I have everything I need so I am not constantly carrying her around the house getting things. She is really heavy when you are 29 weeks pregnant. Shayleigh and mommy have an amazing day! It was almost "normal" and it was so nice just to be us at home! She was a sweet girl and we spent the day snuggling on the couch, reading books, snacking and taking a nap! It really was a wonderful and amazing day! Shayleigh and I were both so excited to have Nick come home! It was just like old times before this roller coaster started.


February 2 - Pajama day!! Shayleigh also apparently decided that she needed to eat like a field hand today and that she was going to train for the olypmics! She ate a whole yogurt, about 30 spoonfuls of Nick's rice pudding, a piece of king cake, a pretty decent size of lasagna, a bowl of oatmeal, and had about 5 sips of white grape juice. She also decided to pull up on the chaise lounger. She crawled about 2 times. She also purses her lips and smacks. Whew. It was a super busy day!! Nick's Aunt Martha came over and brought us some really amazing homemade lasagna! The BIGGEST surprise was the visitors that we got during Shayleigh's naptime. Apparently, Nick knew they were coming, but for some reason NEVER told me "Hey Nikki, you should get out of your pajamas and get dressed." lol. I actually had just laid down for a nap when Nick called me to the living room to answer the door. I was SOOOO surprised to see a high school friend and his wife at my door! I went to a small private high school in Lake Charles (it is 3 hours from where we live now!) By small school, I mean I graduated with a class of 19. Although I haven't kept in touch with most of them like I should, they have been keeping up with me and what's going on in my life and 11 of them got together and donated money to help with Shayleigh's medical bills!! Then apparently they decided on a messenger to drive all the way over here to deliver the money and some flowers!! I was AMAZED and blown away! I guess I really shouldn't be considering how generous and amazing everyone has been, but everytime we get money I am blown away. I am humbled. Everytime I hear of someone who has prayed for us I am blown away and humbled. Nick and I NEVER in a million years would have considered asking for donations. Once we found out, I, of course freaked out and worried about money, but Nick told me "if we have to pay for it $5 a month for 50 years then that is what we will do." After that, we were still nervous, but we knew as parents we would do WHATEVER it took to help our daughter!! Everyone wanted to help and all we kept asking for was prayers. I say all that to say, once again, thank you!! Thank you to each and everyone of you who have donated money. Everyone of you who have taken time out of your day to pray for our family and our little girl. We have been so blessed with amazing support and love!! We really can't begin to express our thanks to yall! We just hope that one day we are able to help others like each and everyone of you have helped us!!

January 26-29

January 26- Nick sent me to Ronald McDonald house last night for my first full night of sleep since the weekend before. Shayleigh has her last weekend therapy at Baylor. I spend most the day gathering up things for Nick to bring back home so we won't have as much stuff to haul Thursday. Shayleigh is now getting meal tray. Unfortunately, they mostly go uneaten. I can't imagine why since pureed hospital food is so yummy and appetizing. HAHA. We have had a hard time getting good vital signs on Shayleigh. Wehave finally found a way to get Shayleigh's blood pressure without a meltdown. We either carry her down the hallway or stroll her down the hallway and keep the blood pressure monitor out of sight. At this point, we will do whatever it takes to appease the doctors our last few days.

January 27 - Today is our 6 hour pass away from the hospital! We start it off getting everything ready - meds, extra clothes, feeding pump, feedings. The doctor comes by before we leave and we make a few adjustments to her medication and we quit the 4 hour feeds with 2 hour breaks. So we dont have to worry about feedings on our outing- YAY!! We finally leave the hospital around 10:30 headed to the Dallas World Aquarium. We are only there for about 1 1/2 hours. Shayleigh is super tired for whatever reason so she dozes a lot of the visit. She does seem to enjoy watching the otters and sharks and stingrays get fed. We end up right in front of the otter enclosure for feedings. The otters put on a show jumping around and trying to scale the glass wall. We are in a cool tunnel for the shark and stingray feeding. We check out the museum gift shop before leaving and to give us time to pick out a lunch place. We go to he Spaghetti Warehouse. The food is ok. Shayleigh gets her meds as soon as we get to the resturant. She acts like she wants to eat, but cries when we offer food. She ends up falling asleep on Paw-Paws shoulder. When she wakes up she ends up scaring us to death by trying to choke and poop at the same time. Needless to say, we have to do an outfit change before we leave the restaurant. Daddy, Grammie and Paw-Paw want to stop and check out some cow thing and graveyard before going back to Baylor. Daddy and Paw-Paw head out soon after we get back to Baylor. Daddy does read Shayleigh's new favorite book- The wide mouth frog. It was a good day had by all!!

January 28 - After talking with the physical medicine doctors and team we have decided to postpone Ritalin at this time. If they think we need to readdress the issue or add it back into our plan of care we will re-evaluate as needed. Shayleigh is walking better. She also kept mommy up last night until 8:45 thrashing around in the bed which is hilarious for her, but so incredibly stressful for me as I try to make sure she isn't going to hurt herself. At first it really freaked me out, but she smiles the entire time she does it and is so proud of herself. I was worried about how well she was going to do for therapy after having such an active night. She did well though. A lot better than I was expecting. So, I was pleased. The tape on her NG tube is coming off and the tape is the only thing holding her NG tube in. So, the hospital is making me replace the NG tube so I can be "checked off" to go home. Even though, I WILL NOT be the one putting it in if it falls out at home. I have a friend who said she would help and I am also going to have home health. I really don't think it should be my responsibility to put it back in especially since she will probably only need the tube for a short period of time, but they said I have to do it before we leave. I spend most of the day crying and freaking out. I have done quite a few NG tubes on adults, but NEVER on a child and NEVER on my own!! Anyway, we wait until after lunch and I am able to keep it together during the whole procedure! I measure for the tube and put it in while the nurse and my Mom hold Shayleigh down. Then as soon as I get it in I hold it there and the nurse tapes it down. Shayleigh did REALLY well and it wasn't as bad as I thought it would be, but I REFUSE to do it again!! As soon as it was all said and done Shayleigh stopped crying and Mommy started crying. The rest of the day we spent enjoying my silly girl!

January 29 - Shayleigh pulled out her NG tube this morning! I tried to tell them that I would like to keep it out and see how she would do. I told them that I didn't really think she needed it, but they were not at all open to that idea. I also told them that they told us at LSU when the kids pulled the tubes themselves that meant they were ready to keep it out. However, Baylor told me it had to go back in. So I told them I WAS NOT putting it back in. The nurses laughed and said, "Oh no, you already did it once you don't have to do it again." I said "good, cause once is more than enough for me." The nurses put her tube back in. Poor baby. It had to be super traumatic for her. The rest of the day went smooth. Shayleigh was restless and wanted to get down and play so we set up the red mat that PT sent to her room with us and set up her lentils for her to play in. NEVER have I seen a child get so excited and act so silly over lentils. She had soooo much fun throwing them everywhere and hitting mommy in the face with them and the toys that were hidden in them. She also took about 30+ steps down the hallway. She was just ready to go!! Shayleigh didn't want to eat much on her tray, but she did eat a few of the things we bought for her. We had a fun day today and she was amazing!!

Rehab January 24-25

January 24 Today has been a terrible day. We changed our feedings, increased our Miralax and added Ritalin. We started Ritalin to see if it will help increase her motivation and make her less distracted. Unfortunately, Shayleigh has been fussy and apparently mommy woke up on the wrong side of the bed too! Thank goodness my mom was here to help me! Shayleigh cried most of the day and wouldn't perform for ANY of her therapies. She refused to eat and pitched an absolute fit! She cried for pt and ot as well. She was absolutely miserable. We are going to discontinue to Ritalin right now and try it again Monday. She let me brush her teeth and her tongue tonight! Score! I have been so worried about her teeth. We have always brushed our teeth twice a day and not getting to brush them at all is killing me!! We have chosen a rehab facility at home. We are hoping that she will really continue to progress once we get home. I am still worried about going home, but I am ready to go. Crazy pregnancy hormones.

January 25 I am headed home to Shreveport for my 28 week OB appointment. I really kind of wanted to reschedule,but I have been having a sore throat, runny nose, and congestion and I want to talk to my OB and make sure it is just allergies or a cold like I think it is. Plus, I have never gone this long without checking on my baby. Perks of working in an ER is having a doppler. The drive home was nice. I was able to spend the three hours just thinking. Yesterday was such a terrible day I needed some time by myself. I was able to run by the house and take a nice little bath. I don't like to take baths in places that aren't my house, my parents house or my inlaws house. Nick was able to come home early and come to my appointment with me. Baby brother sounded good and is measuring ahead. I lost my pictures & videos on my phone so I was able to go to Verizon and they FOUND THEM!! Once I can figure out how to download them I am going to try to download my favorite video. Nick and I were able to eat and then we headed back to Baylor. Nick stayed the night at the hospital with Shayleigh and sent me to Ronald McDonald House to get some rest.
Meanwhile, my parents stayed with Shayleigh. She had a much better day today than she did Thursday. Some of the nurses mentioned water therapy as a possibility a few nights ago and mentioned it to PT so we are going to try water therapy today. Shayleigh has ALWAYS loved water so we thought the water would really help motivate her. I really hated to miss it, but apparently I didn't miss a whole lot. She clung to PT and seemed kind of scared of the water. We think it might because she has never been in the water where her arms and legs weren't doing exactly what she wanted them to. We plan to try water therapy again ourselves once we get home. My parents said overall, she had a really good day! I was so glad to get back to the hospital and get my kisses in!