15 Months - March 21

So technically this is what should have been posted yesterday, but there were more pressing things to write about :)

This month you've gotten really brave with trying new foods. You still love apple sauce, sweet potatoes, butternut squash and peas. You've also taken a liking to carrots mixed with broccoli (but neither of them on your own), teething cookies (as long as you have one in each hand), and FRENCH FRIES. You're not a fan of scrambled eggs, tortillas, baby rice cakes or yogurt bites. Other feeding news: you learned how to drink through a straw!

You are still pretty consistent with your signing, although we're having to work on please and thank you more. We have also added cookie and cracker but you haven't signed either of those yet. We've also been working on adding mouth and nose to your body parts list but you usually just smile and ignore us when we ask where they are. You've also got a few two-word phrases that you use a lot - "more eat", "please bath", "please open" are the ones we see most.

You are starting to be more particular about what you want - when you point to your toy shelf we can't just hand you whatever is closest; you have something particular in mind and will keep pointing until we get the right thing. Same with your books; you've started "reading" on your own more but we have to get the right book first! As you can see in the video above, you get really excited when we guess the right thing :)

You are still really easy going and don't cause much trouble, but you have learned how to take your boots off, can get your socks off your feet and are pretty sneaky about playing with your gtube and trach tubing. You've figured out that if you pinch the cord with your vent sensors that it makes the machine beep. You think it's much more fun than everyone else does.

You continue to progress quicker than anyone expects, but you've also got your stubborn streak. You've made it perfectly clear that you're not going to do anymore of that crawling stuff so your PT has started working in scootching on your bottom. The biggest concern there is that when you fall over you will probanly not have the arm strength to catch yourself completely, and that will carry over to walking too, so she warned us to be prepared for lots of head bumps.

We have a few appointments coming up next week (15 month check up, ENT, and pulminologist) so hopefully we'll have more exciting news to share! 

Shriner Hospital Update - March 20

We made it! Our last minute 2015 Spring Break trip was a success! We went back in to see your pediatrician the day before we left because you were still coughing pretty badly and had started pulling at your ear again. You finished the antibiotics on Friday so that was the most concerning thing - that your ear was still bothering you - and I didn’t want to wait until next Monday to get you an appointment. Thankfully, she was able to squeeze you in that afternoon. And let us know you had a double ear infection. They increased the dosage of your breathing treatment to see if that makes more of a difference and put you on a different antibiotic; thankfully we were able to pick up both of them before we headed out!

We got everything loaded up and left around lunch time on Wednesday (after picking up your medicine and running three other errands…) We stopped at Chick-Fil-A for lunch on the way out of town and you got super whiny when you saw all of us eating…and then I gave you a french fry and you were perfectly happy:)

Mmmm - waffle fries make it all better!

We got into Houston and settled into the hotel and then headed off for surprise number one for sisters: ice skating at the Galleria Mall. They had a great time with that, but you were not too happy to be sitting on the sidelines. You kept reaching toward them through the glass and signing “please” and looking up at me and smiling (like that would win me over…). So sorry Baby Girl - maybe next time! 

Please, please, please let me go!

There's Daddy!!! 

And Sister too!!!

We ate the Rainforest Cafe and the first time the “thunderstorm” came through you kept looking up at the flashing lights and then back at me with a really confused look on your face. Again, when our food got there you kept reaching and reaching until you got a french fry. Then you had to have another one for the other hand. Happiness

Serious french fry business...

Thursday morning we got up, got everything ready to go, dropped Daddy and sisters off at the Metro station to go to the zoo (again, next time you can go too) and then headed to Shriner. We got there a little bit early, spent 45 minutes filling out paperwork and giving them your medical history, then they let us know that our clinic visit was at 1:00…so we had about 45 minutes to wait. I tried to find a quiet place for you to get at least a short nap since you had been signing sleep since we left the hotel, but there was way too much new stuff for you to look at to even consider closing your eyes. Instead you ate a cookie and got stuff all over your shirt for the day. 

They finally called us back and did an upper extremities evaluation. They looked at your shoulders, measured the angles of your arms, elbows, wrists, etc. to see how much you could bend and straighten them, looked at your fingers and played with those joints some. You were so patient with them…until they took away the speaking valve case that you had been playing with. You were NOT happy with them then and would NOT let them play with your hands anymore.

They said everything looked really good and they don’t foresee any need for any type of surgery on your upper extremities. There are a couple of different stretches they showed me to work on your finger joints to help give them some more flexibility and range of motion, but other than that were thrilled with how much rage you already have!

Then we waited about 45 minutes for the lower extremities people to come visit. They did a little bit more extensive of an evaluation, asked a TON of questions about where you were at when you were born and how much has changed, what we’ve been working on, how well you do with different things, how mobile you are, etc. They bent and stretched your legs, ankles, feet and you had no problem with them (they gave you stickers to play with), watched you scoot around in a circle over and over on the table to get to whoever had the sticker you wanted, and talked about a lot of different things. 

You will eventually have to have surgery on your feet - but they said that would be between three and five year old, once your development has slowed some. They were thrilled that you can scoot in a circle but want us to continue working on you learning how to scoot around on your bottom (since you’ve made it perfectly clear in the last month or so that you are DONE with that whole crawling thing) and being more independently mobile. The doctor did want to go ahead and start prepping your feet so he ordered some new splints that will start stretching the skin and tendons at the top of your foot so we went and got you fitted for those. They will pull down slightly on your foot (as opposed to holding it straight like the ones you have now do) but they are going to put a wedge on the bottom of them since they do want us to continue working on standing and pulling up.

Print for your new boots!

After the fitting for your new boots we went to get some glamor shots done :) They take pictures at every stage of the process so we have a record of the progression that you’re making. By that point in the day you were done (and kept signing finished to everyone) so there were no smiles to go with the cookie and chocolate stains (you apparently really like chocolate covered pretzels) that were all over your shirt. 

So from here: we will go back to get your new boots in three weeks (just a quick day trip) and then do follow up appointments every four to six months until they say we’re done. We are being put on the Monday schedule so we’ll be going up on a Sunday, appointment Monday morning and then head back that afternoon for most of the appointments going forward. They said to keep doing what we’re doing and working on what we’re working on; you are doing great and making really good progress so they’ll just keep monitoring and make suggestions as we go.

We headed back to the hotel and you got to rest for about an hour before we went to dinner. I’m really surprised you didn’t crash completely since you hadn’t taken a nap ALL DAY, but I think you were too excited to see Daddy and sisters. When we got back from dinner though, you were out of it about five minutes after I laid you down! You slept very, very deeply - your heart rate kept dropping down below the set level so your alarm went off a few times - fortunately, everyone else was so tired they slept right through it also! This was the first time in a long time that you didn’t wake up once coughing also.

We met Pops and Gigi for breakfast on the way out of town and then hit the road - and traffic. We’re currently stuck between about four 18-wheelers on I-10 and you are way too interested in the noise that Little Big is making in the back seat to fall asleep, although you desperately need a nap and have been saying so since 9:30 this morning. I love you Baby Girl - keep fighting and keep growing!

Your favorite toy for the trip home.

Scheduling Appointments is WAY Overrated - March 13

So this month we've had four appointments cancelled that we've had to reschedule (one of those being the same appointment twice). And yesterday we showed up to an appointment in San Antonio to get one of your shots...and found out it was never ordered so we get to go back Tuesday. Then I got home and checked the mail and found out they changed your appointment at Shriner. To four days earlier.

I completely understand that this is a great opportunity, that we were lucky to get an appointment as quickly as we did, and that these test results will determine A LOT moving forward; but it's really aggravating that they can just change the appointment, ten days out, with no discussion and that instead of calling and working out a good date, they sent a letter saying "here's your new date". As if all that it entails is us showing up four days sooner. As if there aren't two other children in our family to consider. As if time off work hadn't already been asked for. As if our hotel would just let us change dates (hello spring break - what? No rooms available those days? Awesome.)

SO - Daddy and I did some planning yesterday and think we got it all worked out! Found another hotel with rooms available (and an indoor pool for sisters). The Houston Zoo is only about two miles away from the hospital so while we're sitting for an endless barrage of tests, Daddy and Sisters will go hop on the metro and have some fun. We'll do a fun dinner one night and end Sisters' spring break with a surprise trip. Unless it changes again in the next SIX DAYS!

Whew - in other news, this week you have continued to discover that new side of your personality... The one that looks like this:

Some mornings you wake up giving that look, others you wake up giving kisses. We also confirmed your love for french fries at the 4H Fair last weekend - one in each hand is a requirement, not a request...

And, of course, bathtime is still the most exciting time of day:

Slowly Climbing Upward... March 7

As we continue on the never ending quest to find out what's going on with you...

We made it through last weekend. You actually had really good days on Friday and Saturday. Hardly any coughing, no fever, no fussiness. Then Sunday morning you woke up clearly not feeling well again. We spent the day resting and relaxing and sleeping, which you were asking for a lot. Even in the doctors office...

Monday and Tuesday you ran a low grade fever on and off. It was kind of weird because on Tuesday you only had a fever on your right side. You woke up from your nap really flush on that side so we thought it was just the way you had been laying, but it didn't go away. Your right arm and leg felt warm, the right side of your face. Most of that afternoon when the nurse took your temp, the right side would be slightly higher than the left (100.0 vs 100.4) So we went in for your follow up on Wednesday and guess what, you have an infection in your right ear. Sigh. Back on antibiotics. I'm thinking that's why on Sunday you all of a sudden made a turn back to being sick, that's when the infection kicked in. At least that's what I'm hoping and not that they missed it every time they looked in your ears.

Your final molar FINALLY broke through on Tuesday also so you've been wanting to eat again! You absolutely refused to let the speech therapist anywhere near your mouth on Monday morning so we worked on your signing instead. Although you weren't in most cooperative mood for that either... in fact, you were all over the place as far as moods go.

Your typical, under the eyebrow look whenever you don't want to do something
(I imagine you saying "really?? you want me to do what???) 

Your new look for the week. It's actually pretty mean looking when you get it straight on.
This was when she said you had to eat at least one bite of something.
("Go ahead. Try and make me") 

And this is your new cheesy, happy face.
The result of her handing you a teething cookie.

All three of those photos were taken in about a 12 second span of time. That's been your mood lately. You are way too young to already be having teenager mood swings...

The last few days we can tell you definitely feel better. You are more playful, not wanting to sleep all day, just all around happier - if only we could get rid of the cough. The last appointment they finally said that it was probably more of a result of all of the weather we've been having and maybe once it clears up the cough will too. That's as close as I've gotten anyone to saying you have allergies.

They want you to continue on the steroid until your 15 month (!!!!!) appointment at the end of the month, and we'll follow up about the ear infection then as well instead of making us come back in after 10 days since that week is jammed packed for us. Sisters have spring break next week so we're looking forward to some fun time with them; then we leave Sunday for your appointment in Houston on Monday and will come back from that Tuesday; Thursday you have an ENT appointment; Friday, you and I will leave again for the EYL camp planning retreat. WHEW!

On a sweeter note, the past two days you've been really clinging to this bear that my grandmother made you for Christmas. Nanny pulled it out of the basket for you to play with a couple weeks ago and it's been in your crib ever since then. I gave it to you two nights ago to keep your hands occupied while I got everything hooked up for you to go to sleep and you haven't wanted to let go of it since - you even pulled it away from Big Big when she tried to touch it yesterday.

You've never really slept with a toy all night before, they usually got pushed over to the side, but at about 1:00 this morning when I got up to check on you I saw this:

Blanket and teddy bear - a firm grip on both of them :)

Keep getting better Baby Girl!

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!

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Part Two: