Battling the Demons

Most days I am completely fine with Down syndrome and Rachel. Other days, like ones recently, Down syndrome gets to me. I have a hard time knowing what is typical toddler behavior and what may be a "special needs" issue we need to tackle. When Rachel was in the hospital a couple weeks ago, she didn't want to eat anything. All she wanted was her milk and that was fine by me. I could tell she wasn't feeling well. Who wants to eat when they are sick? When we came home, things seemed like they were improving. She was starting to eat some foods again. Then this weekend she just really decided she doesn't have much interest in solid foods at all anymore. She will eat cheerios and some goldfish crackers, but getting her to eat anything else is just frustrating. She'll pick up a piece of whatever it is and throw it off the tray or she'll put it in her mouth on her tongue and just let it fall out. She may even chew a little bit and spit it out.

I don't understand. She's never had a sensory issue before with food so I try not to let my mind go there but having a child with Down syndrome makes you automatically jump to "what's next on the list of things to work on." I try to let my rational mind take over - this could be completely normal. She is teething. She is still getting over being sick and coughing up stuff from her lungs. But the other side of my mind is freaking out, jumping up and down, screaming "OMG, sensory issues! Call the OT, call a food clinic, call the nutritionist! Send help! SOS!" The fact that she now weighs as much as she did at her 12 month check up in September makes me scared too. Those NICU days of counting grams never will leave me I'm afraid. These issues (of mine) are always going to be there I think. I try hard to overcome them but it's so hard sometimes. I just hope Rachel gets through this phase and starts being my munching champ again. Making food just to pick it up off the floor meal after meal can make you go a little crazy.

Look Ma, No Hands!

Back Home!

By Saturday afternoon, I think the staff at the hospital could tell we were done being there. The resident on duty came in and said she would get the paperwork rolling. By 2:30 p.m. we were back at home where we belong! Rachel was super happy to be able to get on the ground and crawl and roll around on the carpet. She also missed her toys and was super happy to see her doggies too. Daddy gave her a post-hospital bath which was badly needed. Check out our little Ed Grimly.

Too bad this morning Daddy had to leave to go back to Huntsville. Tomorrow, Rachel and I will travel to the pediatrician to make sure she is still getting better. She still sounds pretty junky. I am hoping her oxygen stats will be good and that her lungs will sound better. Going back to the hospital would not be welcomed at all!

Trip to the ER and in the Hospital

So folks, there is good reason I've been MIA from this blog.

Back story - Rachel and I have been stuffy with the same nasal congestion since the 23rd of January. Starting on the 4th Rachel started coughing. I thought "uh oh, here we go." That Sunday she began having a fever. I brought her into the Pediatrician the next day and they diagnosed her with double ear infections and told me to use the nebulizer with albuteral ever 4-6 hours. That night her fever went up to 103.2 and she projectile vomited all. over. me. ...yeah. She did manage to sleep Ok but coughed through out the night. The next day she still had a slight fever and when I tried to put her to sleep that night she couldn't stop coughing. I could hear the mucus in her throat like she was drowning. I went up and tried to have her sleep on my chest sitting up a bit but it didn't help at all. What I heard was not good so I packed her up and went to the ER.

At the ER she was listened to by the doc and had x-rays taken. It was determined that she had pneumonia and that a different antibiotic would be used and a nebulizer treatment would be done at the hospital. The doctor said we could go home but I told him I didn't like the sound of her breathing and that I wasn't comfortable going home. (This comment from me gave me deja vu of Rachel's birth - always trust your instincts moms!) He said he had no issues with me staying the night at the ER. They hooked Rachel up to the pulse-ox monitor. She was sat-ing below 88 (out of 100). The doctor then decided he wasn't comfortable with that and booked us a room.

We finally got to our room at 2AM, the nurse then had to ask us an hour worth of questions. The only good question that was asked was "did they test her for RSV?" Nope. They did not. She did the test on Rachel, which involves sticking a tube down her nose to suck out snot, and about 2 hours later we found out we were dealing with RSV too. I called Stephen to let him know what was going on and his work allowed him to drive home Wednesday to help out. Thank God because I wouldn't be doing well without him. We've been able to switch nights with Rachel so we can get some good sleep.

Rachel is still in the hospital. It seems as though the worst has passed though. She needs oxygen at night while she sleeps and during her naps but the rest of the time she's her happy self. It's now just a waiting game for the gunk to clear from her lungs so she can breath better and get more oxygen into her lungs. Let's hope tonight goes terrific so she can come home. Living at the hospital stinks.

Introducing...

our newest family member!

I had my 12 week ultrasound today. I am so happy with my OB-GYN practice because they allow their techs to tell you about the baby and everything that they are doing. It certainly makes you more comfortable. I am 12 weeks, 1 day along but am measuring 12 weeks, 6 days. The nuchal fold measurement was about 1.8 so well within normal. The baby also had it's nasal bone and, from what she could tell, all the parts accounted for and developing properly. I've only gain 1/2 of a pound as well. I have Rachel to thank for that. She keeps me moving! This little bean is a mover like it's sister. Whether or not it's are a boy or a girl that will be chasing Rachel around, we don't know yet. We have another 6 weeks until that little secret is reveled. Until then, I'll be keeping busy with Rachel and being thankful that so far this pregnancy is heading down the right direction. Yay!

Mischievous

Don't let this sweet face fool you.

 This girl is capable of getting in to some trouble.

Today she...

dug out dirt from the plants in the house,

crawled under the bed and got stuck,

threw a number of items through the gate and the top of the stairs so they would tumble down,

got in to the laundry hamper and put my clothes in to the tub,

and ate a barrette. I think. I can't find it but I'm pretty sure Rachel thought it was tasty.

Watch out counter tops everywhere!