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!!