What a Week! February 26

Whew! I feel like we haven't had a week like this since you were still in the hospital! This is going to be a really long post, with no pictures because that's the kind of week it's been - really long, with not a lot of photographic moments.

You started getting sick last Tuesday - red, watery eyes; runny nose; coughing; sneezing like crazy - but since I've been told by three different doctors that babies can't have allergies because they haven't been exposed to enough allergens to develop them yet (HA!), we decided to just let it ride out. You're still working on all four molars and didn't have any fever so maybe it was just that. Well by Thursday you were still coughing. And coughing. And coughing. So we ended up taking you to the doctor and they tested for flu, RSV and strep - all came back negative so they said: looks like a cold just working its way out of her system. Keep an eye on it, you can do breathing treatments if she sounds wheezy, but as long as there is no fever it's nothing to worry about.

Thursday night you had some trouble sleeping still, Friday you just were not feeling well. Period. Friday night, you slept for all of about 2 hours total. In 15 minute increments. Not fun for Nurse Mommy. We didn't have a nurse Saturday so I spent the entire day with you trying to do everything possible to make you comfortable but it just seemed like nothing was helping. You would fall asleep and then wake up 20-30 minutes later coughing and crying. No nurse Saturday night. We decided to keep you home Sunday so you didn't pass anything on to your Cradle Roll buddies and it was another looooong day. Fortunately, we did have a nurse come in Sunday afternoon so I got to get a little bit of rest before another no nurse night. Which ended up being a really bad night.

In addition to coughing, sneezing, wheezing, and runny nose, you added tummy problems. Over the course of the last few days you had swallowed so much mucus and air that we couldn't give you your feeds because your stomach was so full! We were having to vent air out of your stomach (almost as much as your feed would have been one time!) because you would just cough and gag and cry because you were so uncomfortable. We gave you some prune juice and that has helped clear up that problem, except for some really bad gas the last two days, but it was not fun that night!

You finally got to sleep around 3:00 Monday morning. With me holding you so that you were sitting straight up. And you stayed asleep!!! You stayed asleep until it was time for me to get up and start making coffee and lunches. So I texted Daddy and said he got to do that instead because there was no way I was waking you up :)  As much as I hate that you're sick, you are such a cuddly baby when you are because all you want is to be held and I can definitely do that!

You had a swallow study Monday morning that we weren't sure how you would do. Between not sleeping, not feeling well, the constant coughing and gagging, not wanting anything in your mouth, and four molars coming in you actually ended up doing pretty decently. You are cleared to start working on more solid foods (boiled carrots, scrambled eggs, breads, etc.) but they weren't comfortable clearing you for liquids yet. By the time we got to that point in the study you were FINISHED (and you kept signing that - finished, bye, finished, up, bye) and did not want one more thing in your mouth. Plus, she said the liquid they use for the test doesn't really taste that good. When I put it in your mouth you just let it sit there. And cried. You refused to swallow it. It finally started trickling down the back of your throat so you eventually had to swallow it, but it came pretty close to not happening, in which case it would have gone into your airway. So, the therapist giving the test said she understood the circumstances, and thinks you would have done differently if things had been different, but that she can't comfortably clear you for liquids yet. We did get the go ahead to work with thickened liquids (like the yogurt drinks or thickened milk) to help get you ready for next time. So YAY and boo all at the same time.

We left the swallow study and you actually fell asleep in the car (yay!) and I called the doctor to see if we could get back in to see someone again. Went in and they told us to start doing breathing treatments every four hours, come back Wednesday and if things aren't better we'll start her on an inhaled steroid. Our Tuesday nurse was sick so you and I spent the day in our pajamas, taking 30 minute naps, eating in between and doing absolutely nothing else. You slept for a four hour stretch on Tuesday night (the longest since last Thursday!) but could still tell just by looking at you that weren't feeling good. So we went back in yesterday and they gave us the prescription for the inhaled steroid and a different medicine that wouldn't make your heart rate jump so high like the albuterol treatments we have been doing was.  You took a REALLY good nap (finally) while I dealt with the pharmacy.

They had refilled your albuterol prescription Monday, but the pharmacy didn't have any in stock so it wasn't going to be available until Wednesday. So when I went to pick up your new prescriptions, they said they couldn't give it to me because they had albuterol on file for me and Medicaid wouldn't approve both the albuterol and the new medicine since they were for the same purpose so I would need to call the doctor's office and have them fill out some forms saying which one they wanted us to have and why. Also, they don't keep the steroid brand name in stock but insurance would only pay for the brand name on this particular one so we can't get it in until tomorrow. Sigh.

So here we are, Thursday morning again. You are still sleeping (finally) and I'm actually getting this written. We survived a roller coaster week. The house is still standing. Everyone has been fed. Everyone (but me) has clean clothes. The end.

14 Months Old! - February 19

Tomorrow you will be 14 months old - time seems to have slowed down half a millisecond since you turned one but that's not enough for me!

You've been sick the last couple of days and while I definitely do NOT like that, you are such a cuddly baby when you are sick and I can't help but enjoy the fact that all you want me to do is hold you. You are usually way too busy and energetic to let me hold you close for too long; you pop your head up every 15 seconds, afraid to miss something exciting because you are still way too nosy :)

Your vocabulary continues to expand - you are now signing sleep / bed, at least your version of it. The sign for sleep / bed is:

You can't quite get both of your hands on one side of your face by yourself, so you do an approximation: 

So you can now sign: mama, daddy, eat, more, finished, sleep, up, down, open, closed, please, thank you, bye-bye (and occasionally hi), bath and can identify your eyes, teeth, ears and hair. 

We introduced a couple of new foods this month - you really like peaches and those seem to agree with you as well; not so much pumpkin. You got a small rash after eating pumpkin so we're going to hold off on that and try again sometime soon to make sure that's what really caused it. You also got to try broccoli and ate about half an ounce of broccoli and carrots mixed together. Your favorites are still butternut squash and sweet potato. You've also started eating baby cookies too - although you can't quite handle the big bites when you take them, you do well with small amounts.

You are getting really good at rolling the ball, putting things in buckets and taking them out, turning pages, handing objects to us (and taking them right back), and still love to dance anytime any type of music comes on. Earlier this week, I bought you a mirror and you while you weren't quite sure about that baby in the mirror, you've gotten to really enjoy talking to her :)

We got everything worked out for the appointment in Houston so we'll head that way on March 22nd and see everyone there on the 23rd and then go from there! This month we've got appointments with the pulminologist, ENT will see you and schedule an appointment to do an internal look at your trach and how everything is going AND on Monday we have your swallow study! The goal is to add soft solids (scrambled eggs, soft carrots, etc) and potentially start working on liquids.

Growing Like a Weed - February 5

This week has been kind of slow - no outside appointments, nothing too exciting; BUT you continue to learn a little bit more every day!

You FINALLY started signing "Daddy" and even asked for Daddy last night when I picked you up out of your high chair. He was pretty happy :)

You've got two molars coming in so you've been drooling like crazy, but other than that they don't seem to be bothering you! You haven't had any fever and you haven't been overly cranky or whiny.

You have been eating a LOT more the last few days and sleeping a lot longer and more deeply during your naps. This morning you actually slept until 8:35 when I had to wake you up so you could eat breakfast before your tube feeding started. You usually barely make it to 7:30 or 7:40 before you are wide awake and ready to play! The last time you started eating and sleeping this much you grew out of most of your clothes within two weeks. Thankfully we've stocked up on 12-18 month clothes since your birthday so we should be good to go.

When you eat, you are no longer happy with just eating a lot of one thing. You will eat three or four bites of one food and then sign "finished" then "eat" again so that we will give you something different. For breakfast this morning you had apple sauce with prunes, corn, avocado and peas. Three or four bites of one, then the next, then the next until we've gone through them all two or three times. You're actually eating more this way so no complaints here! We've got to get you ready for your swallow study on February 23rd so all the different textures and consistencies is great.

You are working hard on standing still - you love trying but your legs just don't quite have the strength or the range of motion to hold you up yet. Your PT keeps finding new ways to practice though so we'll keep working on it!

We finally got you doing most of your signs on video (two of them actually). Until this point you have only gone through them all on command twice, neither of which you let us film. You also signed your first two word phrase this week ("more" "eat") which thrilled your speech therapist since most babies don't start putting words together until closer to two years old.

Keep learning Sweet Girl!

Part One:

Part Two: