Happy St. Patrick's Day! Happy Wear Green Day! Happy Overload of Irish Blessings on Facebook Day!
Two years ago, I had no clue that today was St. Patrick's Day. Wearing green was the last thing on my mind. If someone had pinched me, I would have thought they were helping me realize I wasn't dreaming - YOU WERE COMING HOME!!! After 86 of the longest days of my life, I was bringing my Baby Girl home. You didn't have a lick of green on either.
I was reading back over blog posts from around that time yesterday and have to laugh at myself back then. You have changed SO much (as all kids do in their first two years) and have much such leaps and bounds. You have grown - not by everyone else's growth chart, but you've got your own chart and you're sticking to it.
Top: first set of soft casts to straighten out your thumb; purple helped with wrists and last helping your fingers curve more naturally.
From your first soft casts to your latest AFOs...you've grown :)
You still aren't a fan of tummy time, but have finally figured out how to roll! And even though you never crawled, you are wearing out your pants and your socks scooting everywhere - either on your backside or on your scooter.
You are no longer confined to the kitchen as you found out that
carpet is not that difficult to get across. You are everywhere now!
Pretty soon though, we'll be walking!
You continue to love books - and have started reading them out loud on occasion.
Reading with Nurse V.
You are such a joy to everyone around you - and I'm pretty sure you've convinced yourself that you are the most funny person on the planet. Your latest fun thing to do is watch yourself on our phones, or watch videos of yourself. This video is hilarious - but watching you watch this video is even better!
There aren't a ton of updates for this post, just a lot of reminiscing. The next three weeks will hopefully go by very quickly, and will be a bit of a flash back as well.
Two weeks after coming home that year, on March 31, you were readmitted to the NICU. One week later, on April 7, we were back in the surgical waiting room as they placed your trach. Three short weeks, but three of the longest weeks. We were just getting adjusted to you being home and then got thrown another curve ball.
Here's the curve ball for this year. Next week, you have a sleep study. Two weeks later, on April 6, you will go in for your airway evaluation. If all goes well, the sleep study results are good and your airway is clear they will admit you to remove the trach the next day. On April 7.
If I had realized that it had been an entire month (instead of the couple of weeks I thought) I would have made myself post a lot sooner! We will hopefully have more exciting news this weekend - we go see the Pulminologist on Thursday and the ENT on Friday to talk about your sleep study results!
So to make up for the lack of posts, here are a lot of videos to show off what you've been working on-
We've been working a lot more with speech therapy on talking. Since your trach has been downsized and you've been wearing your cap 24/7 you are much more talkative! You're getting a lot of sound motions down (if that makes sense) but haven't put any sound with them yet. MaMaMaMa and LaLaLaLa are your favorites!
One of your latest tricks is counting your fingers and toes. We started doing this because your PT wanted you to get used to your feet so that you have more awareness of what's going on with them when it comes time to start walking. (We're still waiting on the gait trainer but are really excited to see you take off when it comes in!) It took a little bit to get used to counting all the way to five before we clapped:
Bath time is still one of your favorite times of the day. You usually don't want to get out when it's time - even when there's no water. And it's freezing. Silly Girl.
This is one of my favorites so far - we finally got your laugh on video!!!!
We had an appointment with the Developmental Center last week and you showed off brilliantly! He was very impressed by your mobility now (that was a concern last time we were here), how many words (and phrases!) you can sign now, and how smart you are! He said the main reason he wants to continue following you is to make sure once you get in school (!!!!) we are going to have a battle with the school to keep you OUT of the special needs class. He said you might need an aide because you will potentially have difficulty with writing, test taking, etc. because of your joint issues but that cognitively you are leaps and bounds ahead of "typical" kids your age!
Last one for today - we're still working on standing :)
Yes, Thanksgiving was two weeks ago, but (once again) I'm behind schedule!
We had a great first Thanksgiving with you! We went to visit Daddy's family and got to meet lots of people that have been praying for you for a long time. We didn't get to go see everyone last year because my doctor didn't want me that for away from home when we didn't know when you would be ready to join us. You spent the entire trip looking out of the window and talking to Little Big...but of course when I tried to video it you looked at me and stopped talking. Stinker. You had some fun playing with Aunt C and cousin L1.
On Saturday we had Thanksgiving dinner with Grandpa, Nanny, Uncle B and Aunt K. You got your first taste of whip cream and LOVED it :) We had a busy day and you enjoyed every bit of it. You showed off all of your new tricks, gave lots of fives and scooted your way across the floor to give Nanny and Grandpa a show!
We put up the Christmas tree and you have loved playing with a couple of the ornaments. You are pretty fascinated by the lights but are not a huge fan of how pokey the actual tree is.
We have a pulminology appointment tomorrow and weight check / feeding clinic Thursday so I'll post some more updates about how those go next week!
I've been putting off writing this post all day, mostly because I know I've got four weeks worth of updates to catch up on, but also because writing means I have to acknowledge that you're 11 months old and I'm not ready for that.
So here goes - updates. The last one was October 24...I'll do my best:
Week of October 27 updates:
I missed this post because we were in Port Lavaca. Daddy's grandfather passed away so we were gone for his funeral. You did really well on the trip and we enjoyed getting to spend some time with family that we don't get to see very often. You got to meet a lot of people and enjoyed all of the attention! You also got some much needed cuddle time with Grandmother:
You did really well being off of your schedule and in and out of the car; lots of time off of the ventilator! Unfortunately, you also got a little bit sick while we were gone and the doctor said you were right on the edge of a double ear infection when we took you in after the trip. So back on antibiotics you went! You've also used up all of the frozen milk supply that I built up while you were in the hospital so we had to start you on a little bit of formula for part of your nighttime feeding. Between the medicine and the formula you had an upset tummy for a few days, but it settled out pretty quickly.
When we got home we played catch up for a few days with all of your therapists and at the end of the week we carved pumpkins with Big Big, Little Big, Aunt C, L1 and L2. They were a little hesitant to get their hands in the pumpkin mess, but you dove right in!
You loved the mess!
L1 getting brave with the seeds :)
Having fun!
The boys were a little unsure at first.
On Friday we went to the Fall Festival at the church building and you got to play some with your friend. You were pretty amazed to watch him crawl all over the place - almost as much as he was amazed with your shoes :)
Week of November 3 updates:
This week was pretty slow - you had an appointment to get the second part of your flu shot (which you handled like a champ as always) and your regular therapy sessions. You are spending more and more time off of the ventilator during the day - mostly you are off all day except when you are sleeping!
You "helped me" put away your laundry one day - I think you were more interested in pulling everything out of the basket than putting any of it away but it was still cute.
You are definitely a fan of peas - they've become one of your favorites this month!
Week of November 10 Updates:
Again, pretty normal week - follow up with the doctor who gave you a clean bill of health for your ears, regular therapy sessions, lots of playing and lots of hard work! You've gotten really whiny whenever you want to do things your way and the therapist wants you to do it a different way. It's pretty funny to watch.
Week of November 17 Updates: (finally!)
Last Saturday we didn't have a nurse so it was a "normal family" day as Little Big kept calling it. We hung out downstairs (off vent!) and you played a lot with Sisters. Took you back upstairs for your naps and then back down for family time. Grammie, Papa and Mimi came over for lunch so you got to spend some time with them and then we went out to eat for dinner "like a normal family" :)
You enjoyed the extra time with Sisters, we've been so busy lately that you don't get to see them as much during the week. Little Big had a friend spend the night on Friday and they played with you some which you loved! We had some lovely winter weather blow through so we cleaned out some of your clothes to make room for some long sleeves and I found a hat that we needed to try on - you weren't thrilled at first:
On Saturday, I went back upstairs to grab something and when I came down you had thrown all your toys on the floor and looked at me, then back down at the toys then back at me like "I can't reach those..."
You pitched a HUGE fit on Tuesday because you didn't want to use both hands to reach for things -
You get to stay in the family a little bit longer - you tried avocado yesterday and LOVED it.
You've gotten really excited about standing and rarely want any help with it, even though you definitely need it. Today, PT worked on pulling up on the edge of the couch...I wasn't a fan. We made a deal that you aren't going to grow anymore so I don't have to worry about planning a birthday party next month.
Here's the 11 month part of the update:
Foods you love - peas, sweet potatoes, butternut squash. You still like bananas and apple sauce but don't eat as much at a time anymore. Avocados are a new favorite.
Your favorite game is peek-a-boo. You've learned how to cover your own face now with anything that's in your hands (blanket, clothes, diaper, etc) but as of yesterday you also learned how to use your hands to hide your eyes. We're also working on high fives - you like clapping other people's hands together because it makes a noise (yours don't quite make the clapping noise) and last night you figured out that you can make the noise on my hand so it's about seven fives in a row whenever you give them :)
Medical updates:
You're off the vent during the day, except for naps, and are doing awesome!
Your feeds are still the same and your still eating pretty well.
Your feet are looking so much better with the braces and your hands are really starting to open up.
You love showing off your thumbs and we're working on the rest of your fingers as well.
You are spending a little more time on the speaking valve and tolerating it fairly well - if you get too loud sometimes you scare yourself with the noise, then you start crying and the extra pressure from crying makes it worse, but overall that's going well also.
That's all that I can think of for now - hopefully I won't get this behind again :)
Time has flown by so fast this last year, but it really feels like just yesterday that we were talking about how exciting it was for you to be 9 months old...and now another month has already past! This month is the big one for us - you have now been home just as long as you were in the hospital!!!
You have learned and grown SO much this month, and I've tried over the last week to collect videos of everything new that's going on.
Last Wednesday you all of a sudden (and I mean, really - Tuesday was completely different!) decided that tummy time wasn't that bad! You did a 9 minute session and then a 4 minute session that day. Since then, every day you've been perfectly content for 5-10 minutes at a time and when you're done, you just roll right over!
The speech therapist has been working hard with you this month and you are responding so well!!! One of the biggest things we're still working on is moving your tongue from side to side and you're starting to do that a little more...mostly when I can't get to my camera, but we were able to catch a little bit of it here.
You also LOVE using the mesh feeder and have started grabbing at it as soon as she sits down with it to get the food in your mouth:
If you finish all of the food in the bowl, you get to play with the bowl and spoon. Lately, you've been acting like you are going to feed yourself, other times you just go crazy banging them together (another skill you've mastered this month!)
This was a pretty exciting month for traveling too - you got to go with Mama and Grandpa on a quick weekend trip for the EYL Planning Retreat and see some friends from this summer:
Shopping with Grandpa - and no vent!
You were a little cranky when we got there :)
But the rest of the weekend you were happy!
And loved being outside!
You also got to spend some time with Nanny when they came to visit. You love riding the pony with Nanny, but only Nanny. I tried to do it with you once and looked at me like I was crazy.
You are ask doing really well with your PT and OT. Your favorite thing to do is still play at your desk, usually just banging on the box but this month you learned how to bang the blocks against it with both hands, how to bang the blocks together on the desk and in the air and how to move things forward and back as well as side to side. The PT found some new toys for you to play with while we work on kneeling - you mastered those in about 5 minutes each :)
On this one, you only wanted to play with the book -
And on this one, only the laptop part - open and close and open and close and open and close -
You've been playing more in your standing / sitting toy thing (I have no idea what it's called!) and for some reason are terrified of the little smiling lion toy. Grandpa fixed that for you by putting a sock over it's head...
Other big milestones this month:
You are doing up to three hours a day now off of the ventilator and handling it just fine! We tried the trach collar twice and you were not thrilled each time. It doesn't connect to anything, just hangs around your neck, so it makes moving around really difficult because every time you move it pushed itself up into your face. So we stopped using it...don't tell Dr. M :)
We had an ENT check up last week and she said everything looked great! AND moved us to an every six month rotation instead of every three! She said the trach size looks good so we will plan on leaving you in this size for a while, and that you've actually grown into it some so you have less of a leak around it and shouldn't be able to get any sound out because there is no air going over your vocal chords...I just laughed and said someone must have forgotten to tell you that because you talk ALL THE TIME! She just laughed.
You got to meet one of Mama's really good friends last Friday (finally!) and were happy to have attention from some new people!
You've started really enjoying your time at Grammie's house - laughing and smiling and talking to her. As big as you have started looking in your chairs, you looked so tiny sitting in the high chair that she has! But you loved having the great big tray to bang on and roll your ball around!
You continue to be a happy, smiling baby! You make my day so much brighter. You have worked so hard this month and have grown so much - I can't wait to see what all happens before next month!
Happy 9 Months Baby Girl! You have had such a fantastic month - constantly growing, learning, and still impressing everyone!
You are spending a lot of time each day sitting and playing at your "desk". You've started working with blocks and learning how to stack things. Your reach is getting better and better, as is your grasp. We tried working on holding crayons, and got these great crayons thinking that they would be ok if you stuck the end in your mouth...but you ended up turning it around and sticking the crayon end in your mouth so we're holding off a little on that! They're a little bit of a softer crayon so you ended up with a lot of blue in your mouth.
You are still doing SO well with eating foods - the amount that you're eating is increasing and you are handling the foods much better in your mouth. You still have a little bit of work to do with your tongue movements but there's already been a lot of improvement since our visit to the clinic a few weeks ago. We did learn that you're not too crazy about pickles. Either that or you just really weren't sure what to think about something so different than what you've been eating! (And thank you Little Big for that nice ending...)
This week has been an up and down week. You had a low grade fever all last weekend, and we thought it was just some teeth coming in....but they haven't shown up yet. You were really fussy Monday and Tuesday and just wanted to be held and cuddled (which I was perfectly happy to do!) but started developing a cough Monday night. We did a few breathing treatments over the week but it didn't seem to help any so we actually spent your 9 month birthday at the doctors office. You were almost back to yourself Thursday and Friday and spent a lot of time playing with your new toys - you mastered getting the rings off of this toy in about 15 minutes!
Anyway, it turns out your have a slight ear infection so you're back on antibiotics; and they renewed your albuterol prescription so we can add that to your breathing treatments as needed. Also, happy day, Mama got a flu shot while we were there. Joy. Not quite how we planned to spend our day, but we survived it.
You are growing up so fast I don't even know what to do! There are days when I feel like things are going so fast that you'll be off to school with your sisters tomorrow and then we have weeks like this week where you just want to be held and rocked that remind me that you're still my Baby Girl. I love you so much and am so proud of you and how hard you're working! Keep fighting and keep growing!
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 ERsand 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!
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!
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 :)
