March 1-2

March 1 - Shayleigh got to spend the day playing with her Nonnie, Grammie, PawPaw and her cousin Gracie.  She was so excited to see them! She said Gracie & Jackson today and she is excited that her Uncle Beau Beau, Aunt Lib and Jackson are coming to visit today! She LOVES her aunts, uncles, and cousins! Her balance is getting better everyday and she is walking better and better each day! Her Nonnie, Uncle J, Aunt Lib and Uncle Beau Beau got her a baby doll on surgery day that dances to a song and has a port where you can download songs via ipod. (Basically, something super expensive that I would probably not have bought myself EXCEPT for such a special occasion). Shayleigh has always loved to dance. And sing. Unfortunately, the singing isn't back just yet, but I KNOW it is coming too! Back to the doll, we have discovered it and we LOVE it!! You press it's belly button and it dances and therefore so does Shayleigh. CUTEST thing EVER!! She also has a keyboard and you can push a button and it sets a beat. Great to dance to as well! So, she has started working on her dance moves again and we are thrilled!! My parents wanted to treat us to lunch today and we were debating on where to go so my parents made the mistake of asking Shayleigh. Her response "pizza."  So, of course we had to hit up Johnny's for the lunch buffet where Shayleigh stuffed her face!! Here are some of her newest words that she is saying: Gracie, Jackson, pizza, and peanut butter.


March 2 - We have a huge consignment sale here in Shreveport where I buy all of Shayleigh's smocked clothes. Don't judge. I am a penny pincher. If you donate to the sale, you get to shop a day earlier than everyone else. I have gotten all my family, my sister in laws mom, and my sis in laws sis in law from home involved too. They all come up and we make a weekend out of it. We had 10 people, 3 kids and 10 dogs visiting. Nobody stayed with us and we spent most of the day out and about. This was probably the FIRST day we spent so much time out and about since surgery. Shayleigh LOVED it! She was so happy to be out and about and was so happy to have the family around! While we were driving around town hitting all the spots the visitors like to hit (Burlington, Pietros, Boardwalk, etc..) I decided to "quiz" Shayleigh. I asked her what different animals said. Stuff she knew before surgery. She was able to tell me what a dog, cat, horse,cow, pig, and sheep said with minimal help!! I know it has to be frustrating for her because she remembers and knows EVERYTHING she was/did/said before surgery, but sometimes she can't always get it out without a little help/prompting. She is super patient and keeps trying and never gives up. That is one of the reasons I KNOW we are going to continue to see awesome things from her! We will continue to progress to our 100% complete healing. Our little trooper wouldn't have it any other way!!

February 25 - 28

February 25 -  Today was my first day shift back at work. She cried a little when I left, but the tears dried up really quickly after I walked out the door. I am glad she didn't cry for long, but I am sad that she didn't cry long too. HAHAHA. Shayleigh spent the day with my Mom. They played and went shopping and according to Grammie they had a GREAT day! She was sooo excited to see me when I got home. She rushed me as soon as I walked through the door for hugs and kisses. She normally isn't allowed to touch me until I have taken a shower, but since it was my first day back, I made an exception. I cringed while I made the exception, but I did it!! She wouldn't go to sleep tonight until I laid in the bed with her. Then, she woke up as soon as I opened the door to leave and cried. Nick went in there and told her "Mommy isn't going anywhere tomorrow so you will be able to spend all day with her."  He left the room and she cried for a second and went straight to sleep.

February 26 - Shayleigh was a trip today! She came up to me and pushed me back to lay down on her pillow on the cold floor and then she made me lay down forever while she covered me with blankets and jabbered on and on. She also has decided that when she wants me to sit down she grabs and pulls on my socks instead of saying sit down. She had a great day in therapy today! She took 10 unassisted steps for PT and she walked by herself into speech. Her regular speech therapist was sick for the day, but she walked into the room and walked over to her chair and sat down and looked at the speech therapist like "what do you want me to do now?" I am still sitting in the waiting room while she gets her therapy, but all of the therapists are good about coming out and telling me how she did for them. She ate a whole bowl of homemade strawberry ice cream with a SPOON tonight!! We had trouble getting her to sleep tonight. We started the process about 7:30. I normally rock her and sing 5 songs to her (Amazing Grace, Old Rugged Cross, Twinkle Little Star, Jingle Bells, and Jesus Loves Shayleigh) and then I put her in the bed. I did this and a few minutes later she cried. I sent Nick in and he sings to her and leaves. She cries. I go back in and bring her to the nursery to rock and sing to her. She lays quietly for a little while after I lay her down, but once again she starts crying. At this time, I am sitting at the kitchen table trying to pay bills and match insurance and EOB's (loads of fun let me tell you). It requires attention and I can't just get up in the middle of it so I sent Nick in to check on her. He sings to her again and walks out. We hear a thumping noise and I send Nick in to check on her. He sings and comes back in and the thumping happens another time with the same results. Nick and I are sitting in the kitchen trying to figure out what to do with her when we hear yet another thump. I send Nick to check on her and he whispers/hollars for me. I get up and come to her door and the door knob is rattling and juggling. She has crawled out of her bed and is trying to open her bedroom door. We stand by the door for a few minutes laughing and once we control ourselves we put on our "serious" mommy and daddy faces, open the door and say "what are you doing?" She is so smiling and so proud of herself. We give her hugs and kisses and put her back down then we both head back into the kitchen. We are talking and all the sudden Nick looks into the living room and whispers "Nikki look." I jump up and Shayleigh is crawling on the floor headed to the kitchen. She has crawled out of her bed, opened the door and is looking for Mommy and Daddy. She stops only when Cheyanne lays down in front of her, rolls over and "begs" for a belly rub. Shayleigh stops, giggles and rubs her belly. Nick and I are hiding and watching and trying not to laugh too loud. When she gets closer to the kitchen we both jump back from the doorway and sit down. She comes in the kitchen, crawls up to me, pulls herself up, and smiles, giggles really loud and hollars "Mommy!!" She is SOOOOOO proud of herself!! At this point, Nick and I are really trying not to be too proud, not smile too much and not fuss either! We give her kisses and send her back to bed. It is now 9:45 and we have therapy at 8:30 the next morning.

February 27 -  Although Shayleigh had an incredibly busy night last night, she woke up super happy and had another amazing day in therapy!  She waved today! She said "No" and "mine" (wish we could have waited on both of those words...haha jk) for speech therapy. She gave PT 5. She also worked and finished a 9 piece puzzle (a huge improvement from the 4-5 piece puzzle she worked last week). We know how blessed we are on a daily basis as we watch this precious little girl improve each and everyday! She is so amazing!! We were told that she may or may not come back to be the same little girl as before. We THANK GOD everyday that each and everyday we see our little girl come back! The SAME as before! Although, we never would have chosen this road for her (or us) we are blessed watching her and her amazing recovery. She is so strong and brave! So much more so that her Mommy and it is a blessing and honor to BE her Mommy and watch her improve bit by bit each and EVERYDAY!! All I can say is that God is SOOO good ALL the time!!!!

February 28 - Shaleigh had yet another GREAT day in therapy!! Her therapists are so impressed each and everyday by the strides she is making! Shayleigh told them today "I like it."  Before we left therapy, all of her therapists came out to talk to me and they were all super excited about seeing her Tuesday and seeing what king of progress she made over the weekend!! Today, she said "Nonnie", "Paw-Paw", "Gracie" and "baby brother." Shayleigh is super excited that Paw-Paw, Nonnie (my sister) and Gracie (my niece) are coming to visit for the weekend.

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!

Rehab 4

January 21- Director of therapy comes by and is really nice and apologizes profusely for the mix up. She also addresses the speech thearpy issue. Apparently the speech therapist is telling her she is happy with her progress. I still don't understand how she told me on Saturday that she wasn't working with her because she wasn't making any progress, but whatever. She also suggests that the therapists try doing therapy with just Shayleigh. As I told her, I told them from day one if they thought I was hindering progress then I was more than happy to just observe from the window. That would not upset me at all. I am not here for me. I am here for my little girl and I want her to have the best chance she can at getting better!! Apparently, this is not most of the parents attitude/take on this issue. She said that she would talk to speech and get her take on how her and Shayleigh are getting along. She asked me to give the speech therapist a few extra days and then if we wanted to switch therapists we were more than welcome to. I was happy that she came to talk. And I was so glad Nick was here too! We go to OT who is first on the schedule and he starts off saying "I heard about this weekend. I am so sorry. She is making ridiculous progress." He also says he wants to try just him and Shayleigh. I am ok with that. She always does really well with OT. He is her favorite. He is really good with her and he will stop and give her love. lol. Last thing she does before coming back up to the room is kneel for about 30 seconds with no assistance at all. He has tried to do this the past couple of days, but she hasn't been to receptive. As soon as we see PT he apologizes profusely and you can tell he feels bad. He encourages me and tells me she is making good progress. I address the idea of water therapy and he says he will plan on trying that on Friday and that we will know for sure if we will do it by Wednesday. I am ok with that. One of the nurses had mentioned it a few nights before and I thought it might be a good idea. Towards the end of PT he puts her on the treadmill with her playdoh of course and she takes 9 steps by herself!! I am so excited! Shayleigh also does well with speech! She won't let her put the brush in her mouth, but she does respond and touch the ipad screen. All in all, today is a good day. Unfortunately daddy has to go back home, but he had an extra day with us so we are one day closer to his coming back!! Tomorrow is our second and last care meeting if we really do go home on the 31. I am going to try to get some answers about why we would go home if she is making progress. I really don't want her going home with a feeding tube! With her only getting therapy 2-3 times a week I'm afraid progression will really slow down!! We are also changing her feeding tube from ND to NG in preparation for discharge home. Tomorrow is going to be a long and busy day. And I have a feeling a very emotional day.

January 22- Shayleigh wakes up very fussy. She isn't real receptive to any therapy. PT didn't even try to put her on the treadmill because she was so fussy. Speech therapy tries to give her a sucker, but she throws it on the floor. She falls asleep for the 30 minutes between speech and OT so she won't even work for OT. She only wants to snuggle and be held. (I'm pretty sure OT didn't mind that at all- lol) We have our 2nd care meeting. The team continues to believe she will be ready to be discharged on January 31. I tell them I am worried about her going down to therapy 3 days a week. I tell them I am more than ready to go home and that I would be more than happy to go home if she could get therapy 5 times a day. They tell me they will try. They believe that she is making progress, but that her progress will be even better if she goes home to her normal environment. Plus, they feel like I have such great family support I will be ok. And also since she does so well with us ..that she will continue to improve. I don't realy know what to think at this point. At our first meeting I was told if she was making progress the discharge date would change. Now, they tell me she is making progress, but the discharge date remains the same. I am confused. And again, I don't want to stay up here, but I also don't want to go home with her like this. If they aren't pushing her here and we haven't made major progress I have a hard time believing that we will make more progress at home with therapy only 3 times a week. As opposed to 6 times a week here. I am still not crazy about going home with her NG tube. Not that I can't handle it or that I don't know what to do with it,but because they expect me to put it back in if it falls in. Personally, I don't believe that is a job I should do. If it were a long term situation, then yes definitely, but she won't need this tube forever. I am stressed, upset and frustrated. I kinda feel like our time here has been wasted if they are planning to send us home and she isn't eating, talking or walking. Nick and I thought for sure she would be doing at least one of those things...maybe we were expecting too much?!?! It is a tough day for Nick and I. Shayleigh enjoys having her Nonnie and her cousin Gracelyn come visit. As always we do some therapy in the room, we try the stander and she tolerates it well. After having 2 nights of restless sleep I decide to go ahead and give her 2.5 mg of Ambien to help her rest. I have tried not to use the Ambien because she wakes up groggy the next morning, but at this point I thought it might help her rest and let us have a better day.

January 23- Shayleigh wakes up at 0720. She whimpers and I jump in bed with her thinking it is the repeat of the last 2 nights where I have had to snuggle with her in order for her to rest. Oh, the terrible trials of mommy...snuggling with her baby. ;) She is wide awake and not acting like she is groggy or wants to go back to bed at all. I say "Good morning, beautiful. You slept really good! I love you!" and she gives me the sweetest smile. And continues to just smile. It was amazing! I get up and start getting her ready and she starts fussing a little and I think oh no. She starts the morning off with 2 sessions of pt at 0900 and 1030. Her first time to have any therapy more than once a day. Pt is very pleased with her. He is surprised at how strong she is (coulda told him that..you should see how stiff she gets for suppositories and enemas lol) and how she can do so much more than they thought (been trying to tell them this and trying to get them to push her a little more). She does everything he asks, but she cries the whole time and isn't real happy about it, which concerns pt and makes him worry about pushing her too hard. I tell him at this point she needs to be pushed! She can do it! Some of the wonderful side effects of cerebellar mutsim are apathy, lack of motivation, irritability and constipation. And of course, my sweet girl has all of those. Plus she IS red headed and stubborn (she gets that from Nick's side of course-lol). Pt comes up to talk to me at the same time that speech comes by to show mommy something. SHE ATE 3 OUNCES OF ICE CREAM!!!! Speech said she was grabbing at the spoon and using her hands and licking them and then whining because apparently she wasn't moving fast enough feeding her!! We were SOOOOOO excited!! During this time, Pt tells me we are going to try water therapy on Friday (which I had suggested Monday as a possibility) and that he wants me to watch and make sure he isn't pushing her too hard. I don't really know how I am supposed to know that. I just want her pushed. lol. She can do it!! Before leaving this afternoon the physical medicine dr came by to talk to us. She is the one who has seen cerebellar mutism. She is also super nice and she likes to play with Shayleigh. lol. She suggested that we might try a medicine to help her with her lack of motivation and to help her focus. She suggested Ritalin. I grew up on Ritalin. It is a good medicine if used as needed. She said that the life is only 5 hours and it works immediately and that she wants to try it for a day or 2 to see if it helps. At this point I am open to any ideas. I don't want her on it long term, but for a little while as needed I am ok with it. So, I am curious to see how tomorrow goes. She has pt,ot and speech back to back. I am a little nervous about them being all bunched up together because she does still tire out so easily, but we will see. All in all, today was so encouraging. I am beginning to see bits and pieces of my little girl coming back. She is happier, silly and all around more content. Which is what she was before December 21. I am still a little scared that this is too good to be true, BUT I also know that I have SO MANY prayer warriors praying that I can't help but know that everything will work out for the best. Plus, God has had his hand in so many areas of this whole situation. From finding the tumor, to providing a great neurosurgeon, to providing a rehab facility quickly, to allowing the pt student to be here Saturday, to providing AMAZING prayer warriors, and love and support groups. I don't know know that words will EVER really be enough to tell ya'll how much each and everyone of you mean to us! We have been overwhelmed with love, prayers, emotional & financial support from family,friends, friends of friends, and strangers! It is amazing!!
               

Rehab 3

January 14- Shayleigh sleeps well through the night! She has been on Ambien for the past 3 nights to see if that would help her rest better. Her sleep has been very restless since surgery. First day she did not cry through PT!! She did amazing with Mr Dan and Mrs. Kelsea! I was sooooo excited and I think Mr Dan was glad that she didn't cry all over him like she normally does! I think we have reached a huge turning point in making some progress with pt! YAY! I think this progress with PT is due to the fact that her head is properly accessorized and that everything is evened out. lol. We increased bromocriptine to twice a day. We are ready and excited to see what this new adjustment will mean for our little angel! Shayleigh cries a little with OT because he takes her playdoh and makes her do a little extra work. She moves her tongue for speech therapy.

January 15- I have officially been kicked out of the bed and my pillow has been swiped by a red headed monster! Shayleigh is super sleepy today. She doesn't want to do much of anything and it is slightly depressing for mommy. According to the physical medicine drs who use bromocriptine and have seen cerebellar mutism before bromocriptine is supposed to make the children wake up and become more active. Not really what I wanted to hear, but they don't seem to be too concerned with her sleepiness. They attribute it to catching up on rest since she hasn't had very restful sleep since surgery. Of course, I am still worried, but what else do Mom's do best besides worry?!?!

January 16- Shayleigh remains sleepy and is slightly irritable when she is awake. Again, I voiced my concerns to the physical medicine doctors, but they don't seem concerned. They think her sleep/wake cycle is off and that she is catching up from many nights of restless sleep. Shayleigh seems content in therapy, but doesn't really do anything new or exciting. Although content is much better than what we were dealing with!

January 17- After spending 2 days in a super funky mood, today I have finally decided not to be upset with all this sleeping and not to be discouraged. It is so hard to be here 24-7 and watch my baby struggle everyday. Especially for me. I am not a positive person. I am greatful for my Mom who is able to see the little progress she does do. If I were here all by myself it would not be good at all. We try a different stander today and Shayleigh does amazing tolerating it! She probably stands for a good 10 minutes and plays with her playdoh on the tray that comes in the front of her stander. PT asks me if I want to take it back to the room and work with her with it! Of course I said yes!! Shayeligh does well with OT. OT is really good at challenging her to do different things. I find out today from the speech therapist that speech is normally the last thing to come back after brain issues. Slightly discouraging news, but praying/hoping/believing it WILL come back!!

January 18- Shayleigh woke up fussy this morning. I am afraid she might be coming down with a cold, although how she got that I have NO idea. I always worry when she wakes up fussy that she will spend the entire day fussy and not do well with therapy. However, this was not the case for therapy today. PT decided to try to see if Shayleigh would be able to walk on treadmill. He didn't put her in a harness, but instead kinda held her up. She was able to take a few steps by herself with both of her feet! I was SOOOOO excited! They were even able to move up how fast the treadmill was going!! took a few steps by herself with both feet. By the afternoon Shayleigh is not fussy and acts like she feels absolutely fine. The pedi sends neuropsych by for a visit and for me to ask more questions. Although, I am asking the same ones to physical medicine and they are able to answer them all. Neuropsych doesn't normally see kids until they are 3 and up and really I have no idea why the pedi sent her by, but we asked her the same questions we asked Physical Medicine. Neuropsych tells us that they normally see the quickest and most progression in the first 3 months after surgery with progression slacking off and ultimately winding down 2 years after surgery. I speak to her about my concern with Shayleighs regression in speech. She isn't making noises like she was and she won't let me brush her teeth again. She says that we will give it a few days and see how things progress. She says she will stop by next week and we can talk and go from there. Daddy comes back into town for the weekend and sends mommy to Ronald McDonald house for her full nights rest.

January 19- Shayleigh has therapy at 0900 this morning so I make sure that we are back to the hospital by 0830 to help Daddy get her ready. We arrive and she is already dressed and ready. (good job daddy!!) We get in our wheelchair and wait for our first therapy which is OT. Our normal therapists are off on weekends so we normally have prn people or other therapists who work with her. Unfortunately 0900 comes and goes. They are normally about 5-10 minutes later than the time they give me anyway, so I don't think anything about it. We just stroll Shayleigh down the hallway to keep her busy while we wait. 0915 rolls around. They are never this late. I ask the nurse what the deal is. She calls and says "they don't have her on the schedule for today. They say she isn't making any progress so they are going to give her a day off." First of all, what?!?!?!? If she isn't making any progress we should be pushing her harder NOT giving her days off! Plus, she walked on the treadmill the day before!! And pt & ot have both told me she is making good progress. I am beside myself. I start crying. Speech comes by and it is our normal therapist who told me the day before "I will see yall tomorrow." And when I said "I thought you didn't work weekends." She says "I am tomorrow for Shayleigh." Anyway, I ask her and she says she isn't making any progress in speech and apparently not at all so she needs a day off. I am so upset. Of course, about this time we receive our first visitors from home. I decide to run down to the gym to get Shayleighs stander that we had accidentally left down there the day before. I am so upset when I get down there, but of course just by "chance" (God, again?!) the student that has been working with her for PT is there making up a few sick days from the week before. I stalk her and wait by the window. When she comes around I ask her about the no progress business. She is just as flabergasted as I am and says she is making progress and we are very pleased. She then tells me that she thinks scheduling was messed up. Really all I cared about hearing was that she was making progress. Even though, they have been telling me she has, when they all the sudden "take it back" I just needed a little encouragement again. The nurse sends a message to the director of therapy who apologizes profusely and says she is sorry for the mix up. I am still upset that someone, somewhere mentioned that she is making no progress. I am also upset that speech decided she needed a day off. She is here for the sole purpose of rehab and I don't think that she should take any extra days off! Not making progress is a reason NOT to take a day off! I am anxious to talk to her regular PT & OT and I am also hoping the director of therapy makes an appearance and has an explanation. We do our own version of PT & OT minus the treadmill.

January 20- Shayleigh enjoys playing with her cousin Victoria. They play with rocks and playdoh. We do our own PT & OT with her. Plus, with all the excitement from visitors we figure she is probably worn out! Nick finds out before he is about to leave to go home that his boss is giving him Monday off. Shayleigh and I are excited that Daddy will be here an extra day! And I am especially excited since I am anxious about how Monday will turn out. We also talk to the dr and the nurse supervisor about a new speech therapist. We are worried that she is giving up on our girl and we can't have that!!

Rehab 2

January 9-  Today, we started on a new medicine called bromocriptine. Research suggests it can be used to speed up the recovery process in children with cerbellar mutism. We are very hopeful as we start this new medication, but as with this whole process it has no guarantee on whether it will work or not. We are however, incredibly hopeful! Shayleigh is able to play with playdoh with her left hand and move it around on bedside table. We are concerned about her vision though. She plays with her playdoh but stares straight ahead and won't hardly look down at her hands while she is playing with it. We voiced our concerns to the pedi and the physical medicine dr and they have put in for a vision consult. Unfortunately, the vision clinic is only once a week on Wednesdays and she won't be available until next Wednesday. Shayleigh is also able to lay on her stomach. She is making progress, it just isn't as quickly as we would like.

January 10- Shayleigh is very tired today. She doesn't want to do much of anything but sleep, but when she is up she is more alert and content. No "miracle" has happened with her second dosage of bromo, but we still continue to wait and hope and pray. We had a family dinner this evening and we all went (my parents, me and Shayleigh). They had fajitas & I also found some grapes. We parked Shayleigh at the table and it was pitiful the way she watched me as I ate the grapes. She wants to eat so bad. We have decided that we won't be eating in front of her anymore. Or taking her anywhere with us while we eat. We are hoping that she will be able to start eating soon. Shayleigh is more vocal today than she has been in the past. Normally, she has just been crying, but today she was making other sounds which was encouraging.

January 11 - My dad came in from Lake Charles and was playing with Shayleigh today doing a little silly thing he did when we were kids and she smiled and laughed/giggled!! It was the most amazing thing to hear and see!! The best part was that her giggle/laugh sounded just like it used to! It was music to this mommy's ears for sure!! Later on in the afternoon I was snuggling with her and "getting her neck" and she laughed and giggled for me too! She only does it if we try to make her laugh, but hey, it's a sound worth working for! We sent the video of the first laugh to daddy and it made him so happy! He is so ready to get down here and love on his girl! Shayleigh is doing much better using her right hand. It is still weaker than her left, but she has been trying to use it more. Daddy arrived and came bearing gifts mommy told him we needed from home. Most important gift was Shayleigh's hair bows!! She has never been without bows for this long and since our hair was long enough to fix I put the hair bands up and I didn't have time to look for them before we headed over here for rehab. The nurses and pretty much everyone who pass by my room and see the bows are stunned. They all stop and ask if any are for sale! lol. Of course, Shayleigh says no, they are all hers & that it is very important for a little girl to be properly accesorized! (ok, maybe mommy says that, but I'm only saying what I know she's thinking.).

January 12- Shayleigh touched her nose today. Just randomly. She also swiped at her face and rubbed her eyes. Sounds like something simple, but oh so encouraging to see! She is interested in finding things. She also put her hand in her mouth and was messing with her tongue. I think she is trying to tell her tongue to wake up!! Shayleigh sat straight up in bed last night and scared the mess out of me. lol. It was good to see, but it was just super surprising. She also scared the tech who was in the room. We will take every little bit of progress we can! (just maybe not in the middle of the night. lol jk)

January 13- Today is our day off from therapy. Although we normally do some type of therapy ourselves in her room. Today we played with playdoh. She loves it! We have finally found something that she still enjoys playing with. She was able to squeeze playdoh with her right hand! A huge improvement from not being able to do anything with her right hand! She is also able to transfer playdoh from her right hand to her left hand. She hasn't been doing that. Last night she scared me again. She was restless turning from side to side. I normally give her a few minutes to see if she will fall right back asleep, but she didn't so I got up from the couch I have next to the bed and her tongue is sticking out of her mouth and her eyes are wide open. Talk about scare me to death. My first thought was that she was having a seizure, but it was so quick and she rolled right back over and fell right back asleep that I knew it wasn't a seizure. The nurse came in and we started goin through her medication list to see if any of the side effects could/would cause that. We also called the pedi that was on that night. He didn't seem too concerned, but said that if it happened again to call and he would come and check her out. Needless to say I didn't sleep much at all for fear of missing something. Fortunately, the rest of the night was uneventful. Shayleigh has also found her belly button. And if you ask her she will find it for you.

Rehab

January 4 - It takes me until 0200 this morning to finish getting things ready for our transfer to Our Children's House at Baylor. I lay down for a few hours, but have to get up around 0600 to get things ready for Balentine to come pick us up. We give Shayleigh some Ativan to help her rest for the ambulace ride. We end up with 2 great girls transferring us! They let Nick ride with us in the front seat. Our entourage follows us (we have 3 cars). And we go in style in the new Mercedes. Shayleigh starts off on the stretcher by herself with me sitting on the side by her, but right before we stop for bathroom breaks, sugar checks, and breakfast (for me) she gets a little fussy. I end up on the stretcher with her for the remaining 1 1/2 hour ride. We both doze off. We get here and it is surreal. I don't really know how else to explain it. We get to our room and meet our nurse (who is fabulous). Our room is directly across from the nurses station which is good and bad. All the doctors come in and they are fabulous! They listen to us and act like they have nothing better to do than be with us. It makes us feel really good about choosing this facility. Pt & Ot make an appearance & work with her a little & nutrition also comes by. It is overwhelming in a good way. Tons of people in and out most the day. We get our schedule for therapy for Saturday. Sunday is the only day of rest therapy wise. It is a busy day, but a good day. Shayleigh spends most of her day sleeping. We feel very confident in our team and our decision with this facility. At the end of the day, Nick has to leave because only one parent can stay the night. I cry. Give me a break, I'm pregnant! lol

January 5- Shayleigh spends her first night in a crib by herself since surgery. I have been scrunching up at the end of the bed because she has all the lines and wires & I didn't want her to pull anything out. So, when she moved mommy was all over it rearranging lines and wires. Needless to say, I haven't had much rest between her moving around and people coming in and out. But, I don't care. Her first night here and her first night by herself and what does she do??! She pulls her TPT tube out. lol. So we have to worry about getting that back in before her next dose of medication later this afternoon. The doctors come around again and we ask a few more questions. Shayleigh is quietly alert. She goes down for her Pt and OT and does relatively well. I tell PT that we are having trouble with her wanting to lay on her back for diaper changes. She normally sleeps curled up on her left side and wants to do that ALL the time. The PT gives us a wedge to help us with positioning. After we get back to the room with the wedge and try to change her diaper she has no problem rolling onto her back. We don't even need the wedge at all! She also takes a few bites of strawberry yogurt, some orange juice and some ice cream off a flat spoon for speech therapy. She doesn't cry when they bring the food to her mouth and opens her mouth for them. Which is a huge feat for her!! Speech tells us not to try to feed her on our own. We are finally able to talk to a speech therapist and get an ok t o brush her teeth. I know it really is the least of our concerns, but to mommy it is a super big deal! She actually allows me to brush her teeth with a little sponge on a stick without crying. Honestly, I think she enjoyed it! Nick informs me that he is staying with her tonight so I can go back to Ronald McDonald house and get some rest. He pulls the "I won't get to see her until next Friday" card.lol I don't mind him staying because he does need time with her plus I feel that she is much more stable. So, after making him promise he will sleep with her and make sure she doesn't pull her tube out and that he will call me for any questions or concerns I head to the RMDH for my first full nights uninterrupted sleep since 12/21.

January 6- I set my alarm (after Nick isntructed me not too) for 0745. Dress and am ready for breakfast by 0800. We are heading back to OCH by 0830. Of course, nothing happened during the night and she did fabulous. Her nurse during the night apparently checked on her every 1-2 hours to make sure she didn't pull her tube out. Nick looks no worse for the wear. Today is our rest day from therapy. We work with her a little on a few minor things that we were shown the day before. She has a really great day and is quiet and alert. It makes mommy and daddy very happy!

January 7- First full day of therapy. PT is scheduled for 0830 this morning. Shayleigh spends most of the morning prior to PT crying. She spends the whole 30 minute session with PT crying. Crying real tears! It is terrible and so mommy spends the rest of the day down in the dumps & crying. This is where my mom comes in and really becomes even more of a blessing. She watched Shayleigh so I could leave and get something to eat and to go to the store down the road and calm down. It is so discouraging to watch your child who is so smart and so advanced cry when someone is trying to "play" with her. Speech therapy comes and she does relatively well. She is able to eat a few bites of strawberry yogurt. OT is the saving grace of the day! He comes around 2:00 pm to bring her to the gym. My mom has bascially told me that I was to stay in the room and take a nap because that is what was causing me to break down. While they were working with OT, mom got to talking to the therapist and he had some encouraging words to say. I know this sounds silly, but I really do need encouragement too. I encourage Shayleigh and I try my best to stay positive and keep a good attitude for her, but nothing in life prepares you for this. As a mom, it is terribly hard to watch this and not break down every once in a while. Of course, baby brother doesn't really help the situation with all the hormones he's bringing in the picture. So, anyway, the therapist gives me a pep talk and I realize that it isn't the end of the world and it IS the first day of therapy. I think I have this expectation that we are here now, I fought so hard to get her here and I just expect her to be showing tons of improvement right away. I am slowly learning patience. Of course, we have the mutism that is causing most of our problems. Have I mentioned how very thankful I am that my mom is here?!?! She is willing and ready to step in when I need a mental break and she is also much more positive and sees the small changes that I miss. I keep waiting for something huge and she is constantly pointing out the small accomplishments and changes that happen each day. If it weren't for her...it would be bad. I would have such a hard time seeing the good. Shayleigh has a better afternoon and we discuss moving PT back later in the afternoon to help her perform better.

January 8- Shayleigh wakes up at 0100 this morning tossing, turning and crying. It is too early to give her more Benadryl (we have been taking it every night to help her sleep for a few hours), Ativan has been discontinued and the only thing we have to work with is Motrin or Tylenol. She sleeps pretty good after Motrin, but she is still slightly restless. We get her up for 0800 because we are supposed to have PT at 0830. We get her in her wheelchair (she was fitted for this sweet ride on the first day she got here) and we take off down the hall. She loves going for rides. We find out that PT has been moved to that afternoon. She seems to enjoy riding so we keep walking up and down the hallways and then we go to the library to read a book. She starts getting fussy around 10 ish so we head back to the room and I rock her. We lay her down for a little nap in the bed and we let her rest until around 1250. She is supposed to be dressed, in her chair and ready for the therapist at the time scheduled for therapy. We start the afternoon off with speech therapy at 1:00. She does ok. She seems to get frustrated and spends some of therapy crying. The therapist only stays with her and works with her for about 15-20 minutes. I have my first care meeting where everyone on the team comes together and we discuss plans for Shayleigh and plans for discharge. They set her discharge date at January 31. I really kinda freaked out. I was super surprised that they set it for so soon when she really had not had much therapy or progress.

Our emotional roller coaster 2

December 28- She has her TPT tube and is getting continuous feeds for 24 hours to help her with her nutrition. She seems to be tolerating it well. We are slowly increasing the feedings until we reach our target feed rate. We are hoping with some nutrition we will begin to see a little change in her. She still sleeps a lot. She still isn't talking and really isn't interested in anything. Pt came and showed us some things to do with her. Unfortunately she will be off for the holidays and won't be back to visit until next Wednesday. Which is very disheartening. It's hard being the parent and the therapist. She is able to shake her head yes and no when asked questions. It is hard to get an answer though because she remains irritable. They think it is due to the Decadron and the cerebellar mutism. Poor baby.

December 29- Everything remains the same. The nutrition doesn't seem to help the way we had hoped. We just keep watching and waiting. We start worrying about her not having a good BM.

December 30 - The pediatrician wants to do yet another CT scan just to rule stuff out. Shayleigh is given 1 mg Ativan before procedure and 12.5 of Benadryl. She refuses to stay still for the scan. The nurse ends up giving her another 1 mg of Ativan and they have to use a whole roll of tape to tape her head down. LOL. My little girl is a fighter. I was kinda worried because that is A LOT of medicine,but the nurse and the resident went down with her and were ready with an ambu bag if needed. The CT comes back and shows she has even less swelling, although swelling still remains in her right and left cerebellum. So that is good news for us!

December 31- New Year's Eve. The hospital basically shuts down except for nurses and doctors. Nick and I are frustrated that no one is working with our girl. We get her up and ride her down the hallwall in a wheelchair and try to get her sitting up and interested in anything. Not even play-doh merits a reaction. And she LOVES play-doh. It is harder and harder to remain encouraged. We have changed her feeds from regular pedialyte to pedialyte with fiber. She is also taking colace and miralax. She hasn't had a good BM. She is able to hold her head up a little more today that she has been. The doctors all remain positive and have nothing negative to say. We continue to wait.

January 1- Happy New Year. Nick and I have now decided if we knew then what we know now we would have waited for surgery. The plan was to have surgery on the 21 and be out by the 26 or 27. Shayleigh still dosen't say anything. She remains irritable & kinda lethargic. She gets super upset when we even mention food or drink to her. She isn't even interested in suckers. Before surgery she would eat suckers all day if I would let her.  Goodness forbid we try to put anything to her lips. Even carmex or "lip stick" as we call it gets her agitated. She starts crying, clenching her lips and throwing her head around. We are ready for therapy services to start tomorrow. She is supposed to have a swallow test done in the morning and that will tell us more about where she is swallowing wise. The neurosurgeon has mentioned getting the ball rolling for inpatient therapy. She told us she will speak with the case manager. She gives us a choice between Baylor in Dallas or Childrens in New Orleans.

January 2 - We turned her feedings off at 0200 this morning so she would be ready to eat something. The neurosurgeon comes around and she gets so agitated her TPT comes out. We don't want to replace it until we get the swallow test and results. We have been told we will do it this am. Finally, at 1:30 p.m. we find out that the swallow test that was scheduled for 0800 this am isn't happening because the pediatric speech therapist (the ONLY one they have) is out of town until tomorrow. Mommy makes a HUGE big stink!! We decide that we will go ahead and put the tube back in and then go from there. We will have to shut the feeding off tomorrow morning around 0300 so she can take the swallow test in the morning. Mommy basically has a melt down and lets everyone know that she isn't happy. I realize people need breaks and holidays are breaks, but I do NOT understand letting your one and only speech therapist leave town with no backup for so long. I mean, at least have someone on call for emergencies. I have decided (with a little nudging) that I will  be complaining about this therapy issue to management. She is more alert today, but slightly agitated. Of course, she is probably picking up that from me. We have started making a fuss and pushing to be transferred to inpatient rehab. We have told case management that we want to go to Baylor in Dallas. She has sent the paperwork and informs us that they will discuss it tomorrow and let us know if they accept her or not. Nick's boss has been absolutely amazing,but one of us does need to go back to work, which means he will only be able to visit on weekends. We feel that LSU was the best choice to have the surgery, but we are wasting time here now. We know that she needs aggressive therapy. We feel that each and everyday we spend here at LSU makes it much longer until we can get her back to where she needs to be therapy wise.

January 3- Our swallow test is scheduled for sometime this morning. Since Nick was supposed to go back to work yesterday and ended up waiting basically all day on a swallow test that didn't happen I have decided they better come and do this test early this morning. I told them that if we haven't gone by 10 am then I will really raise a ruckus. LOL. The staff assures me that they totally understand and I think they are just as frustrated as we are. We finally have the swallow test and upper GI around 0900 (a really good thing). We find out she is able to swallow without aspirating, but her tongue isn't working like it should. She can't move it and she isn't able to move stuff to the back of her mouth. The upper GI was fine. We were encouraged. We were super glad we did not go straight to a PEG tube as well. We ended up having to replace her TPT tube again. Nick heads to work for the afternoon, although I don't think he gets a whole lot of work done due to all the phone calls. We find out we are accepted at Baylor with transfer being set up for 0700 that next morning! The case manager told us that she had NEVER had anyone be accepted to Baylor that quickly. She said normally it takes 2-3 days just to hear back from them. By this time, we are really overwhelmed. We then decide we should probably find out if our insurance will cover Dallas. We find out that Baylor isn't in network and that our insurance will only pay 80% until a certain amount and then it will be covered at 100%. But, it also depends on how they bill we may end up going above and beyond that amount. With this new information we ask the case manager to send paperwork to Children's in New Orleans because it is in network. We hear from the case manager that IF we get accepted into Children's it would be late Friday afternoon/evening before we could get down there and we wouldn't get seen by anyone until Monday. So basically, we would be waiting...again. So, with this information we decide Baylor is where we are meant to go. At this point, like most parents (at least I hope most parents are like this) we just want what is best for our baby girl. If that means paying medical bills for the next few years then so be it. My OBGYN calls before we hear back from Baylor and we decide to set my glucose test for the next day at 0845. Once we decide about Baylor however I have to call her back and they fit me in for the glucose test and an appt that afternoon. I get back to the hospital after my appointment and the OBGYNS nurse calls to tell me that I failed my 1 hour glucose test and since I am leaving town in the am they will call out a glucometer for me to check my sugars.  I have to check a fasting sugar and 2 hours after breakfast, lunch and dinner. She tells me to call in with my numbers Monday morning and we will go from there. I can't tell you how excited that makes me (heavy sarcasm). So, once Nick gets back to the hospital that night we bathe Shayleigh, shovel some food down and I head to the house to pack. At this point, I haven't been home AT all since 12/21.

My Trooper

This is something I typed up before surgery and I just never posted it. Enjoy.

I think there is definitely something to this blog idea. This is such a wonderful release for me! I thought that I would spend a little time to tell ya'll how my little precious girl is doing. I have talked about all the plans. I have talked about my feelings and now I thought maybe I could talk about her (she is more fun to talk about anyway).  All I can say is that my little girl is a TROOPER!! She did really well at the hospital last week & was her usual busy and silly self. Running around the room, sliding on the floor, and unfortunately licking blocks before I could stop her. I have said before she is super smart and she knows something is going on, but she isn't quite sure what. Nick and I felt we need to tell her something, so we have told her that we and a lot of other people are praying for healing for the boo boo in her head. She has NOT SLOWED down!! Nick doesn't let her crazy activity bother him, but I am a nervous wreck. She has one speed...FAST!! She runs, she plays, she hollars, she wrestles with her daddy and generally acts like a crazy girl. As I have said earlier we have tried not to change our schedule or our routine. We figure that while we can control it, her life needs to remain as stable and normal as possible. We have been going to church, storytime, and shopping just like we normally do. She has been super lovey dovey and sweet. She has been giving LOTS of kisses and hugs to Mommy and Daddy. She wants to be held a lot more than normal and she wants to "cuddle in Mommy's robe."  I equate this to last week and for her sensing that something is wrong. She has always been somewhat of a Mommy's girl, (I am home with her more) but she has been even more so since coming home from the hospital. She wants me to hold her. She has this whine that is absolutely pitiful. When she sees me she immediately runs to me and puts her arms out for me to pick her up. Then she kisses me and wraps her arms around my neck. I am worried that this only Mommy business will hurt Nick's feelings, but he has been so understanding. He knows that kids go through phases and he is waiting patiently for his time. Don't get me wrong, she loves her daddy. She loves to wrestle and tell him "lay down so I can beat you up." I think during this time she just needs more comfort than normal. Daddies are for fun and games. Mommies are for comfort, crying shoulders, and discipline. She needs comfort. And as many of you know from personal experience that kind of comfort and the feeling of "all is right with the world/stabalization" comes from Mom. It's a woman thing. I can't imagine how traumatic things are going to get if we do have to go through with the surgery. I'm not worried about the physical part of it, I am worried about the emotional aspect. It is going to take her a while to get back to herself and feel normal and stable again. That's why, again, I beg and plead with you to please join us as we pray for a miracle for our litte girl! Nick and I covet yall's prayers!

Nikki

Our emotional roller coaster 1

December 22-  Shayleigh is extubated and doing well! We are having a little trouble controlling her pain. She is getting Fentanyl every 2 hours, but she is very agitated before the next dose so we are having to use Ativan to help calm her down. She  is able to eat some ice cream, 1/2 popsicle, and drink some orange juice. She is still in PICU. We make sure to ask the neurosurgeon to order something for constipation and she orders Colace and Miralax.

December 23 - Shayleigh remains in PICU. We have switched her from Morphine every 2 hours for pain to Lortab every 6 hours. The Lortab is working much better and she is able to rest between doses. She also appears to be more comfortable. We made the mistake of waiting 15 minutes later for her Lortab and ended up having to get her some Lortab and some Morphine soon after to help with pain. We won't make that mistake again. She isn't talking yet and eating and drinking aren't interesting to her. She did swipe a popsicle out of my hand and bring it to her mouth, but she didn't do anything with it other than that. She had an episode early this morning where she just stared off into space and wasn't blinking. Our nurse called the neuro on call and they think it is just due to the swelling from the surgery. They don't think it is seizure like activity because the part of the brain they operated on doesn't cause seizures. That was some good news for us. We took her dressing off today. She has an 11 cm incision. It looks really good!! It comes from the base of her neck into her head. As good and tight as the stitches are she probably won't have much of a scar and if she does her hair will cover it. She is having some right hand weakness. She wasn't moving her hand much at all, but now she can move a little. Still having trouble squeezing her right hand. She doesn't have any problems with her left hand or either of her legs. The neurosurgeon said we could go to the pediatric floor today, but we asked to stay one more night in PICU. She will go to the pediatric floor in the am.

December 24- We are still in PICU. We are waiting until a private room opens up on the pediatric floor. We told them we didn't care how long it took to get a private room we would wait!! Shayleigh still doesn't want to eat or drink. She isn't talking and is sleeping a lot. She does have periods where she wakes up and seems more comfortable. She is getting Lortab around the clock since we messed up yesterday. Hoping tomorrow that we can wean the Lortab. We got our room around 2 pm. It is a private room- YAY!  We got her bathed and washed her hair. She wasn't crazy about the bath since it was a real quick sponge bath in the bed, but she loved having her hair washed. She closed her eyes and grunted while we scrubbed. My sis in law cut her hair. It was a tangled mess and we couldn't get the sticky stuff out of it. We are probably going to eventually have to shave it since she has random patches missing, but one step at a time. Nick, my brother Beau and my mom shaved their heads for Shayleigh. So when we do shave her head she won't be the only one with no hair. Her having no hair is hard on me. It took forever to get the hair that she does have, but in the grand scheme of things it is just hair and it WILL grow back. The state police sent a giftbag with toys, socks, and a tshirt for our little princess. Our family is relieved that they no longer have to wait for visiting hours to come see us.

December 25- Christmas Day.Her pain remains under control. Child life brings her some more toys. Shayleigh is still sleeping a lot. She still isn't eating or drinking or talking. Family is able to visit whenever they want. We forget that it is Christmas Day and have made no plans for dinner so we have to scrounge around and find somewhere to eat...we settle on chinese. Mommy and Daddy LOVE the hospital pediatrician that comes to see Shayleigh.

December 26-  Neurosurgeon tells us that she thinks Shayleigh has the rare side effect that we discussed briefly before surgery- cerebellar mutism. She thinks that it is self limiting. She also tells us that the only thing we can do is wait. (GREAT lol). We can tell that she feels partially responsible even though she could not have done anything to prevent it. Mommy has a melt down. Pediatrician brings by information regarding mutism. Shayleigh goes down for yet another CT scan. We talk about putting either a peg tube or a TPT (transpyloric tube) in for nutrition since it has been 5 days since she has eaten. Shayleigh still doesn't seem interested in taking anything by mouth or in talking. Everytime we try to ask her about eating or drinking she starts crying and clenching her mouth closed. She isn't real interested in anything and sleeps most of the time.

December 27- It has been 6 days since she has eaten and she doesn't seem to show any interest in eating or drinking. We decide to try the TPT. We decide that we would like to give her a chance before we let someone cut on her again. We start giving her pediasure via TPT for 24 hours. After the 24 hours, the plan is to have continuous feedings through the night (7-7 which is eventually moved to 5-7) & turn the feedings off during the day with the hopes that she will be hungry enough to try to eat or drink something. Neurosurgeon comes by and tells us that she is praying for Shayleigh every night. She assures us that everything we are seeing is normal. She is more alert and we have stopped the Lortab. We are giving her motrin and tylenol for the pain which works even better than the Lortab. Her continous IV fluids are stopped at this time.