Continuing the Good News - March 26

This week has been a whirlwind trying to get everything back to normal after our quick trip last week! Saturday we had Cousin L5's birthday party, then we went and hung out with some friends and played games. Sunday you REFUSED to take a nap during services, then we went and saw Grammie for lunch and you absolutely crashed when we got home. You slept from about 2:30 until 6:15 when we woke you up just so you could be awake some before bedtime!

Monday you got to see all three of your therapists and they were thrilled with how well the Houston appointment went! Tuesday we introduced you to the swing - you got it for Christmas and Grandpa helped me hang it about three weeks ago, but we're just now having nice enough weather to use it!

You were a little unsure at first...

Slowly started to enjoy it...

Really getting the hang of this...

MOST EXCITING THING EVER!!!

I think Ms. Tab and I had more fun watching your face than you had in the actual swing. Wednesday we went back out there, but all you wanted to do was eat the swing :)

The difference in right before lunch vs after dinner

Wednesday, your ST suggested we start letting you feed yourself more because you are wanting to be in control over what goes in your mouth and when. You've started insisting again that you help when someone is feeding you and have gotten particular about what you want to eat. We tried a couple of new things this week that you weren't too fond of (snap peas being one of them) but we did learn that you absolutely enjoy chocolate...as long as it's not ice cream (still too cold for you!)

This is my "I'm so excited about how awesome this is" face

So tonight I just put some food on a plate and let you have it. This is what we ended up with:

A variety of foods we know you like. You did pretty well at first...

Note the missing plate. You wanted it to go over the side with the rest of your cookie and the yogurt bites...

Sigh. I guess we're at that stage. Time to buy a rubber mat to go under your high chair :)

This week you've started really insisting on having your books a lot. As long as we guess the right one that you want (which you will let us know with your super excited face). This evening you were so tired from not taking a nap that you were super fussy when we got back from taking family pictures (can't wait to see them!) and kept signing sleep, but every time we laid you down you just cried and cried. I rocked with you a little bit and you kept pointing at your book shelf so we got you a book and then you pointed to your bed. I laid you down in bed with your book and you were happy as could be laying there reading your book! When the night nurse got here, you had already fallen asleep and the day nurse told us that she looked over at one point and you had the book tucked up under your chin with your blanket. We couldn't find the book so we are assuming it's somewhere under the blanket with you. I wish I could have gotten a picture of you reading in bed - reminds me a little bit too much of myself :)

This was the third book you wanted to read - kept signing more when you finished each one!

We had an ENT appointment this afternoon and one of the first questions she asked was: When is the pulminologist going to let you start weaning off the vent at night? She's ready for you to be done with the vent so we can get rid of the trach! She said everything looked great as far as she could tell. We scheduled for you to have an outpatient procedure on April 8 (happy birthday Nanny!) to do an airway evaluation. It's done in the OR and you will be sedated, but as long as everything goes well you'll come home that day (but we all know how much you like surprises....) They will do a complete internal exam of everything; make sure there is no scar tissue or granuloma building up around the trach, check the size of the trach, check your lungs, make sure everything looks good and see if anything else needs to be taken care of. While you are under they are also going to clear your ears out (apparently you have extremely waxy ears) and see if there is a really bad fluid build up that keeps causing you to have ear infections (even though they are pretty infrequent for a trach baby) and if there is, how old the fluid looks to see if it's not draining at all or just on occasion. If need be, they will go ahead and put in tubes. I'm fairly optimistic that since you've only have three double ear infections over an almost seven month period that it won't be necessary.

Next week will be just as busy - we have your 15 month appointment on Monday and pulminologist on Tuesday - hopefully she'll agree that we can at least start working on a plan to get off the vent more!

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!