Look What I Can Do! - August 28

So this week's Monday post didn't happen...but hey, it was the first day of school so I get a little bit of slack right?

We're working on getting back into a routine, especially in the mornings, and so far it's going well! You get to eat first thing in the morning while you're nice and happy so that makes it a little more fun.  You're therapy sessions are right after lunch Monday - Thursday and then we have Friday off, or available for any sessions that had to be rescheduled.

This week the speech therapist said she wanted us to bump you up to three feedings each day so we get to rework that schedule again. The plan is for you to spend a little bit of time downstairs at dinner time and eat with the rest of the family. We tried it out today and it didn't go so well - there was WAY too much new stuff to look at for you to focus on eating! Hopefully that will change as you get used to having more time downstairs with us.

You've got a new trick that you were showing off really well today - but weren't too thrilled with me recording (as usual).

Here's video one of me trying to get you to do it:

In this one, you were thinking about it, but instead just got your thumbs going a little bit (you've been much more active with your thumbs, moving them individually and twirling them this week):

Then you finally decided to do it...but not if I sang...

Silly girl - I'll eventually get it on video...

8 Months...REALLY?? - August 20

I can't believe I'm even having to write this...but how are you already eight months old??? It doesn't seem possible! You've been home for three months now and are doing so GREAT! Your nurses and therapists are continually impressed with your progress.

You are doing so well with speech therapy - you are now eating .5-1 ounce of puree, two times a day now. And way more of it is actually staying in your mouth than getting pushed back out by your tongue. You're still touch and go as far as the speaking valve goes. Last week you had it on for a little over an hour one day and 2.5 hours the next...and then about 30 seconds the day after.

Occupation therapy is going just as well - you have FULL range of motion in your arms now, and not just when the therapist is stretching them either. You can stretch them out all the way when you reach for something - and you definitely know what you want and work hard to get to it! You love these little pool balls that I found at Dollar Tree but have just about chewed them to pieces. You've gotten really good at getting more than one of them in your mouth too :)

The PT is super excited by your progress also - you're sitting up for 3-5 minutes at a time by yourself now, still go back and forth with tummy time but getting more ok with it, and really love kicking and stomping on things with your new boots.

We didn't have any appointments scheduled this month but managed to squeeze in a trip to the pediatrician, two ERs and the ENT... Other than that it's been a nice, calm month getting settled back into the routine of having the Bigs back with us and getting them ready for school. Next week we'll be full force into the new routine and continuing to push forward. We've got appointments with the Therapeutic Feeding clinic and the Pulminologist...and hopefully no other surprise visits :)

You love spending time with your sisters still; your face lights up whenever they come into your room! It's going to be a really hard adjustment for you when they aren't here all day making noise and playing with you.

I love you Baby Girl! Daddy and I are both so proud of you and all of your hard work!

Lazy Day Make Up - August 18

Today we successfully made up our lazy day! With the exception of speech and occupational therapy, we did absolutely nothing productive today...well, Mama did laundry and dishes and cooked and went grocery shopping...but other than that...

Today you did some great exercises on your tummy - lots of push ups and head lifts. As soon as you got over on your knees and elbow you started rocking back and forth like you were going to take off! Won't be long now!

We had a fairly uneventful weekend as well. Daddy had to work Saturday and Sunday for dorm move-in so we just hung out around the house. Sunday you got to meet Cousin S! She was visiting Aunt C and stopped by on her way out of town to meet you.

That was about it for the weekend - nothing exciting since Thursday's appointment. This weekend should be much more adventurous - it's Big Big's birthday party!

Thanks for the lazy day Baby Girl :)

Speaking Valve - August 15

So a few weeks ago I posted about your new tricky whiny face that you employ whenever you don't get what you want...

Today, you had your speaking valve on when you started pitching a fit...which makes you look AND sound even more pitiful whenever you are pitching a fit.

You've done super well the last few days with your speaking valve - before it was always touch and go.  One day you'd do fine and keep it on for 20-30 minutes and the next it would barely be on for 15 seconds before you'd start crying. Tuesday, you kept it on for an hour and ten minutes and today you had it on for one hour and 45 minutes! Hopefully this continues :)

You're also doing so well with your puree feedings that the speech therapist wants us to start doing them twice a day! AND (as you can see in the video) you can now roll over onto your right side just as well as your left side.

Keep working hard Baby Girl!

ENT Follow Up - August 14

"So you're not going to like this..." is the worst possible way ever to start when delivering test results. Unfortunately, I've heard it enough that I knew what was next. "There's absolutely nothing to indicate that the problems you had on Friday occurred."

Thanks Baby Girl.

We went in today for your follow up with ENT after last Friday's excitement. We were running a little bit late because traffic was awful. You were already tired from waking up early and the appointment being right at about the time that you usually eat breakfast and take a morning nap. And you didn't sleep as well as usually last night. Three strikes against us going in to the appointment.

All week, you've been back and forth. Mostly over your cold (about 85% I'd say...) but still a random runny nose or cough here and there. Your secretions have been perfectly thin and clear one day, and ridiculously thick and gross the next. When we suction, we're supposed to go down to 9.5 and you start gagging and coughing at 8. You haven't wanted us to do any cleaning around your trach site, and will start pushing away my hands anytime I get even close to it.

When we got to the office, they took us to get your vitals and you starting crying as soon as they picked up the blood pressure cuff....you really don't like those things, but you've never reacted that way before! Naturally, your BP reading was high. They put us in the room and you calmed down some...until you heard Dr. B's voice. You knew what was coming next and started really crying - pretty sure you hurt her feelings...y'all used to be buddies! So she looked at the outside of the trach, made a comment about the granuloma tissue still being there but not as much (but went ahead and treated it with silver nitrate anyway - strike 4!). Then she changed the trach out without any problems whatsoever. Awesome. No resistance. No fussing. No problem.

So I'm trying to explain everything that's been going on in the last week and she says, ok - we'll scope her and see what we can see. <Insert more tears and crying> We started to load you back up in your stroller and she says: "just turn the vent off and carry her down there. We know she obviously doesn't need it." Awesome. Once we get to the scope room you were so sleepy and unhappy that it didn't matter anymore - you were going to cry no matter what. She was able to get the scope in your trach pretty quickly and then looks at me and says "You're not going to want to hear this..."

Sigh.

She went all the way down to carina (part that makes you cough) - nothing.
Back up to the end of the trach - nothing.
No scar tissue. No granuloma that has retracted. No blood or scabs. Not even any irritation to indicate that something might possibly have been bothering you.
Nothing.

There is no logical reason why the trach wouldn't go back in; why it's been bothering you all week; why you've been coughing when we suction you. No evidence of any problems.

I love you Baby Girl but you are one medical mystery away from giving me an brain aneurysm.

Learning to be Lazy - August 11

So I've now got an alarm set on my phone to remind me to post SOMETHING - as much of an update as there is - every Monday. If there are any big pressing updates, I'll post those when they come up but at minimum, I'm shooting for at least weekly updates!

This month was looking to be pretty slow - we only had therapy appointments (all at the house) on the schedule. Then they called to say your new AFOs (Ankle and Foot Orthotic) were ready so we went to get those today - they're so awesome! So much easier to use and much cuter than the cast splints. 

Now we get to add another trip to San Antonio for an ENT follow up because you clearly don't understand the concept of LAZY DAY! Last week Big Big was gone to Grandmother and Granddad's house, I was out of town and Little Big spent some time with Grammie...and you decided to get sick. Daddy and the nurse had to take you to the doctor's office on Thursday and they said you had a cold that looked like it was moving toward upper respiratory infection so they put you on antibiotics to help fight it off. Friday morning (right after Little Big and I were talking about making it a lazy day and staying in our pajamas and watching movies all day...) there was some difficulty with suctioning your secretions so Mama decided to do a trach change in case there was a plug starting to form. So we got everything together for the change, I pulled the old trach....and the new one wouldn't go in. 

In situations like that, you reposition the neck and try again. So we did. Still nothing. There was something right passed the entrance to the stoma that was NOT letting the new trach in. We tried 4 different trachs the same size and then moved to the trachs that are a size smaller. No luck. After nine attempts (aka - nine trachs Mama had to spend the next two days cleaning and sterilizing) we decided it was about time to call the ambulance. They transported us to the ER here in NB, where they are thoroughly unequipped to deal with pediatric cases...especially trach/vent cases. The ER doctor said he would fell much more comfortable sending us to the facility where the operation was done...so we went to San Antonio. Once we got to San Antonio we got to see some old friends, (again, if you want to visit we can just go visit...it doesn't have to be through the ER) and while they were trying to figure out what to do you started getting cranky because you missed your morning nap.

Not because you didn't have a trach.

Not because you didn't have a ventilator.

Not because people kept poking your neck with tiny objects.

Because you were tired.

You were off the vent, with no trach, for almost four and a half hours and did amazingly well. When we found out they were taking us to SA I called your ENT to see if there was anyway she could meet us there since it was her day off. She called me about five minutes after I left a message and her first question was "How are they ventilating her?"
"They're not. She's breathing completely on her own."
"And her sats (oxygen saturation) are ok?"
"99-100%"
"Oh. Ok then."

Which for me proves that 1) she doesn't need the vent during the day, when she's awake. 2) she's still an awesome baby. The next step would have been to start weaning her off of the vent during the day time, but maybe this will help speed up the process :) You would still need it at night until they figure out the apnea issue (which would require getting legitimate, not confusing, actually conclusive sleep study results) but during the day...

Anyway, the ENT on duty was able to use intubation tubing starting at a size 2.0 then slowly work up (2.5, 3.0...) until he got to 4.5 in order to get your 4.0 trach back in. Unfortunately, our only option is not the same style of trach that works best for you (they only had standard, not the flex tend), and we're stuck with it until Thursday when we can follow up with your ENT. The standard one is really irritating for your neck and greatly limits your mobility because every time you move it tries to come off. BUT we survived. You are now re-trached and back on the vent and we are waiting patiently to find out WHAT HAPPENED!?!?!?!

Saturday you had a bit of a fever so you didn't get to join us for dinner at Papa and Mimi's, but Grammie came by the house to see you - and couldn't believe how much you've grown! She doesn't get to see you much because she's only able to get to services on Wednesday nights and you usually only get to go on Sunday mornings.

So yeah - you've got a lot to learn...mostly what lazy day means... And I can't wait to see you continue to grow and learn! Love you Baby Girl!

Wrapping Up July - July 31

Wow - so much has happened in the last week; it feels like I haven't posted in such a long time (ok one week is kind of a long stretch for me!) but we've been so busy! Let's jump back on the calendar and get caught up:

I posted the pictures that Lisa took on July 24th - later that day, you got your new chair!!! It's a pretty blue color, with lots of room, is a little bit wider than the other one and you sit up much higher in it. It doesn't have arm rests, which was fun to watch you discover - you put your arms out where the rests were on the other chair and they just fell down! You tried several more times before you gave up :) The new chair itself is a lot heavier because of new regulations (it has to be bus safety / crash tested on the chance that you are still using it when it comes time for school and you ride the bus) but the frame is MUCH lighter and easier to work. It also has a tray attachment for when you start eating more or need the space for playing. Overall, I'm thrilled with it - especially because it has a clip for the vent, making it much easier to access!

The next day, we went to get you fitted for some new AFOs (ankle and foot orthotics) to replace the braces that the PT made you in the hospital. You were a champ with the fitting part and hopefully we'll have those in sometime next week. You are growing so quickly you've already outgrown the last pair the PT made you! 

This past weekend we took a trip to The Woodlands to go hang out with some of Mama's co-workers and see the awesome job they were doing at the annual conference we have there. You did so good in the car - you took a couple of short naps on the way there and a long two hour nap on the way home! I didn't remember to take any pictures of you in them, but you got "official" Say What! onesies to join your EYL Camp onesies. You made some new friends, and got to see some old ones as well.

This week we've just been hanging out, waiting on sisters to get home (hurry up Sunday!!!) and working with PT and OT on your new skills. You've figured out how to roll onto your right side now, but still don't like it as much as the left side. Yesterday, you made it all the way onto your stomach and were ok hanging out there for some tummy time (which you still aren't a huge fan of!) 

You're also doing very well with your eating - you really like sweet potatoes but are ok with apple sauce and bananas too. We found out this week that one sweet potato will make enough baby food cubes for 7 feedings, two apples makes enough apple sauce for 12 cubes and 4 carrots makes enough for 15 cubes! I've had fun this week making baby food and using the silicone ice cube trays to get us a really good stock of food options. Mostly, you just like to play with the spoon and dance a little while you eat.

Lastly, you've got a new trick that works great on Daddy, but not so much Mama... You've started scrunching your face up like you're going to cry, but then you look over at us to make sure we see you and how upset you are. It's pretty pitiful to watch. This week you started adding in a few little foot stomps / kicks to really emphasize how upset you are. Daddy was convinced there was something wrong with you the first time he saw it and didn't believe me when I said you just wanted him to pick you up :)