Exciting Stuff! - July 12-18

Got some more reunion pictures to share!

Getting ready to go swimming!

Toes first...it was cold!

Not sure what to think...

Kicking my feet some...

Eh....not impressed

Let e try my hand...

Done. All of about 3 minutes later...

More shots with Papa and Granny:

"C'mon JoAnn - we can't take her with us..."

And a little more family time:

This is quite possibly my new favorite shot of you...you tried so hard to get some good naps but it was HOT and LOUD!

In other news, YOU CAN ROLL OVER! Well, part of the way. You've been working with OT and PT on laying on your side and it didn't take you long to figure out how to get back onto your back. Then yesterday, you started going from back to side! Fortunately, Nanny was tying to video you talking to her when you rolled over onto your side so she got the first time on video...then you just started showing off going back and forth. We'll have to start working on the other side now :)

Lastly, your second tooth finally came through. I think this one is bothering you a little bit more because you've been more fussy than usual this week. You can kind of see it in this picture, but have to look closely. The first one is coming out really well! (I had to take the picture of you from this angle so you would actually move your tongue out of the way!

Today, we had to go get your 6 month shots...and I keep forgetting that you'll be 7 months old in two days! CRAZY! The Pedi said everything looked great and she was super impressed with how well you were doing!!! We have to go to the ENT this afternoon because the granuloma in your stoma is getting really irritated and keeps bleeding. Fortunately, it doesn't seem to be bothering you any. 

Love you Baby Girl - keep growing and smiling!

Cox Family Reunion - July 12

So this is only a semi-post on the Cox Family reunion this last weekend. Uncle B & Aunt K got a new camera they've been playing with and took most of the pictures for us, but here are a few that I snapped and wanted to share!

You had a great time and were so happy, despite the heat and long day and lots of car time. Your naps were pretty much nonexistent but you did get a few quick snoozes in before someone would come by or the kids would get loud or you would get disturbed by people coming in and out of the area where we had you plugged in. You got to meet a LOT of people who have been following along and keeping up with and I am SO glad we were able to make the trip. So many people care about you that haven't even met you yet!

You and Little Big were pretty sleepy on the way there so you got a quick nap to make up for the early morning that I snapped a cute shot of - she wants your car seat to be softer so it's more comfortable for her to sleep on :)

Most important part of the day: you got to meet Papa and Granny, Nanny's parents. We pulled up about 10 minutes before they did; I don't think I've seen either of them move as fast as they did trying to get out of the car in years!

Lexi JoAnn, meet Linda JoAnn

"You're the only reason I'm here today"

They were absolutely thrilled to meet you, and by the end of the day you were grinning and smiling right back at them! I am so glad that they've gotten a chance to meet all of my girls and have wholeheartedly welcomed everyone into the family! They have been married for 54 years now and are such amazing grandparents (and great-grandparents!)

You also got to meet some of Nanny's cousins, both of her sisters and one brother, and a lot of Mama's cousins and their kids. You were so patient with everyone coming in and out and loved all of the attention you got from everyone! I'll post more pictures with family and your first time swimming when I get them from Uncle B (hint, hint :D)

We had a pretty long day on Saturday, got back late and barely made it up and out the door in time for services on Sunday morning (we weren't thinking about alarm clocks when we got home!) but I'm so glad we made it because you FINALLY got to meet Jackson!

That's all for now! More pictures to come soon :)

Quiet Week - July 7-11

It's been a quiet week - no appointments to go to, just therapists coming to see us; I thought I should post quick update for everyone before tomorrow, which will get it's own post sometime next week!

This week we only had OT and ST because the physical therapist is out of town. You are continuing to do SO well with all of your therapies and the therapists are impressed each time they visit. OT and PT have both been working on sitting up, and you're making it about 10-15 seconds now before you lose your balance. You do better in the bathtub because it's got a little bump that helps support your knees so you have more balance, but even on the ground by yourself you are doing really well using your trunk muscles to keep yourself up!

You were sitting up really well in the bathtub the other night and then you found your feet! It was so cute watching you try to reach down there and get them. Every night since then, whenever we're in the bath and I sit you up to rinse off your back you go straight for your toes.

We've also gotten a couple of new (to us) toys / chairs to help you learn how to sit up. One is an exersaucer that has a lot of things to play with on it and you were SO overwhelmed when we first put you in it. You kept looking at the toys, then back at us like "What am I supposed to do with all this???" The exersaucer is great though because it will encourage you to put more weight on your feet, which will hopefully start extending and stretching your knee joint more.

The other chair we got is to help you sit up better when we're working on eating. The speech therapist says you're doing a great job already with lip closure and is going to start working on straw training you pretty soon! The newest thing in the world of ST is to skip sippy cups (which don't progress baby's oral motor development since it's the same motion as for a bottle) and to move toward straws instead because it's a different set of muscles that need to be developed and strengthened. We'll see how that goes! You continue to enjoy food time - especially if you get to help - and the other day started moving side to side in what we've started to call your happy dance. You've done it a few more times since then when you're sitting up and get really excited about something!

The only other news from this week is that I finally got a picture of your tooth! The one next to it is teasing us; somedays it looks like it's fixing to pop through and then nothing. You haven't fussed or complained about any of it thought!

Look closely - It's there :)

Oh yeah - and we started cloth diapering this week! I had wanted to do that from the beginning but it obviously wasn't an option in the hospital, but after buying diapers twice (we finally ran out of what we had from showers!) I decided we could use that money elsewhere and it was time to bite the bullet and jump in to cloth diapering. So far, we haven't had any major issues! A few minor leaks, but we're getting that figured out :)

That's really it this time. Tomorrow is the Cox Family Reunion (Nanny's family) so you get to meet more family and spend some time with Sisters for the weekend down at the lake!

Happy 4th of July - July 4

We've had quite a busy week! Monday was the swallow study (still yay!!!), Tuesday sisters had dentist appointments that you got to tag along for and then we all loaded up and went to your pulminologist appointment.

Dr. M said everything looked good, to continue taking you off of the support breaths when you are awake and that we could increase the high pressure alarm so that it doesn't go off every five minutes (when you smile, laugh, nod, breathe too hard...)

We spent the afternoon hanging out as a family before sisters are gone for a couple weeks - lots of smiling and laughing!

Wednesday was a little more calm, but Thursday was even more insane! We went to see the orthopedic specialist first thing that morning. He was so much more attentive than the first Ortho we saw - he took X-rays of your spine and hips and said everything looked good. He's not concerned about your hands, but wants to see us back in 6 months to keep an eye on your feet.

We went straight from there to the geneticist's office. They mostly just wanted updates on how you're progressing but they also found a couple of new journal articles for us. Unless we have any other questions, we won't be there again.

We got home and you refused to take a nap for the longest time - which was fine because Nanny and Grandpa and cousins J and J got to see you! J has been waiting to see you for quite a while now!

Today was another busy day - breakfast at home, headed to Cedar Park for lunch and to meet Uncle J...you thoroughly enjoyed tasting the blueberry milkshake at Mighty Fine!

After that we went to plug in at Nanny and Grandpa's hotel, then met up with Uncle J and Aunt C, Uncle B and Aunt K for dinner and fireworks in Round Rock. You're a fan of Rudy's cream corn. After I pulled the spoon away you kept reaching toward me for it, so I put a little more of the sauce on the spoon and you went to town on that spoon!

You were thoroughly unimpressed by the fireworks...but that may be more because you were soooooo sleepy by that point. You took some pretty good naps today, but it was still about two and a half hours past your bedtime so not long after the show started you fell asleep in my arms, stayed asleep as we walked back to the car, barely woke up as I strapped you in and then slept all the way home.

Happy first July 4th Baby Girl!

Swallow Study - June 30

Well we're back in the game first thing this morning! Today you had your swallow study and OT, tomorrow you see the pulminologist and PT (and both sisters have dentist appointments!), Wednesday is ST and OT, Thursday we get to meet the orthopedic specialist and start looking at a long term plan for your feet (hopefully!) and have out rescheduled geneticist appointment and then Friday we finally have a clear day!

You've started getting really excited when you get in your chair and absolutely refuse to lean back and relax - there's too much to see and you can't miss any of it!

The swallow study went REALLY well! They started you off with apple sauce, thinned it down to a honey consistency, then purée, then nectar and finally thin liquid. You did great with all of them except the thin liquid - more of that came back out of your mouth because you haven't mastered keeping your mouth closed. What you kept in, you had no problem swallowing though!

They suggested working with the speech therapist on lip closure and getting the spoon further into your mouth to help facilitate the swallow. Overall, you can safely swallow everything and we have the green light to start introducing good as long as you tolerate it!

As a bonus, when we were leaving the hospital, we ran into the trach training nurse! It was so good to see her again - and she plans in stopping in to see us at the pulminologist office tomorrow too!

Such a great day, and you rocked in another J.O. Original dress :)

Your First EYL Camp - June 21-27

I've always wondered if all the extra stuff people take on vacations with babies is really necessary. I know they come with special needs and items, and you want to keep them on as much of their normal routine as possible, but after loading down Nanny's car to head out to Kerrville, I completely understand. Believe me, I would have loved to leave half of it behind...

I pulled out tubs for us to pack in so they would stack nicely - one for me, one for Little Big and one for you (Daddy and Big Big were coming later in the week). Then we added one for your medical supplies. Then we had to fit in the oxygen tank, the ventilator stand, the suction machine, your pack n' play, the monkey rocker, and your chair. Plus all of the regular stuff that comes with you (portable suction, emergency bag, feeding pump, nebulizer, pulse ox...) Then I realized I had to take enough frozen milk to make it through the week so we had to add a cooler. Then I remembered your boppy and the piano toy (which the PT and OT agree is the best toy for you right now because it fully engages everything - your hands, feet, arms and mental abilities). Then we were ready to go.

Whew!

We got there around 10:00 but our room wasn't ready until almost 2:00 so we just hung around the camp office and got some of that stuff set up. As people were coming in they got to meet you - most importantly, Mr. B and Mama M got to hold you finally!

You loved meeting all of your new friends:

And got to spend some quality time with Nanny and Cranpol:

Nanny did such a great job taking care of you and learning everything that goes into that! I am so thankful that she was willing to come spend a week (a lot of it alone in a dorm room with you!) to help take care of you so that I could focus on what needed to be done for camp. By the end of the week she had everything figured out and could even get you loaded up on the stroller with all of your gear!

You did so well with all of the noise and the racket. There were a couple of days that you got a little fussy because you were SO tired but refused to go to sleep, but for the most part you were awesome and would go to sleep wherever we were at the time. You got a lot of comments about how good natured and calm and happy you are. Such a sweet baby and smiled all week at everyone you met!

Little Big wanted some "real" EYL shirts this year (some that fit her - not those big ones <adult size S> like last year) so I made you some also - she was thrilled that y'all got to match every day! She was very helpful to both me and Nanny in taking care of you. She also helped pick out your hair bow everyday and got really good at putting those on.

Overall, we had a great week and I can't wait until next year! By that time, you will be all over the place :)

Quick catch up - June 28

Whew! What a week we've had! I'll do a more thorough update tomorrow (I hope) but for now it will suffice to say that you now have a huge new family of EYL Camp members. The staff, volunteers and participants that got to meet you all fell in love and we're full of comments about how amazingly calm and patient you were! More about all that later, but for now - welcome to the EYL family (officially)!

We got home around 7:00 last night. Just in time to quickly get unpacked, get your room set up and get your bath taken care of before the night shift nurse got here. Then we were all getting ready to crash when he came downstairs and let us know your g-tube had come out. Nanny had said it felt a little loose that morning, but it came all the way out! I tested the little bubble that's supposed to keep it in place and it had a home in it. Not sure how, but it happens (very rarely). So last night, on about 4 hours of sleep from the night before, completely exhausted, I got to pm replace your g-tube for the first time. I had been shown and practiced before on the training doll, but that's not something you get to practice like the trach change because it's a much more sensitive track into your stomach. But we survived!

We were all still pretty lazy today but you were happy as can be, back in your room and HOME! On another exciting note: your tooth is FINALLY starting to break through! You were chewing on your burp tag today and when the nurse was tugging at it to play with you she said she felt it snag so she looked, and sure enough- it's just barely starting to poke through! Hopefully it won't take the long for all of them to push through.

Love you Baby Girl! It's sleep time for Mama now - 10 loads of laundry (and the thought of 3 more tomorrow) is enough to wear anyone out!

----

Side note: here is a picture of the g-tube:

The balloon is actually inside you and is inflated by inserting 3-5 mL of water into the port. That's what holds the g-tube in place.

You're 6 Months Old!!! - June 20

We've made it halfway through the year...somehow!

I am so proud of all the progress you've made and the growth that everyone has seen in the month since you've been home. Your doctors are continually amazed at how different your prognosis is compared to when you were born.

Physically, you are so big now - I know babies grow a lot the first few months, but you've really taken off since you've been home.

You're finally wearing 3-6 month clothes (the regular 3 month clothes are a littttttle too tight now!) and are in size 3 diapers. 

When we went to get your feet casts redone, the PT was amazed because she has to use two rolls of plaster on each foot - the first set we made, one roll did both feet!!! 

The first set of hand splints were done when you were 10 days old, and the feet were done at 6 weeks; just a little bit of a difference!

You increased from 38mL per hour feedings to 56mL per hour your first week; now you're at 100mL per hour.

You were 6lb 15oz at birth; 13lb 13oz when you came home; now you're 15lb 3oz.

You are so curious about everything - when we're walking around the room you watch every move that we're making, usually with a look that let's us know whether we're doing things right or not.

You still love new people and already have the home nurses wrapped around your finger. You particularly love getting snuggles and kisses from whoever will give them to you! 

You still love playing with your toys, and have started examining them more now before you just shove them in your mouth (that one tooth still hasn't popped out yet) and this last week you've started cuddling up with your blankets whenever it's time to go to sleep. You're favorite has been a soft brown one, but that one had to get washed so we just grabbed a thinner pink one (Mama's Baby blanket) to use one night and the next morning you didn't want to let go of it! You pulled it back out of the nurses hands whenever she started to uncover you :)

This month you've met a lot of new people - We took a road trip with us to see Daddy's Grandmother and Grandad, you got to meet some of the people Mama used to work with and tomorrow we're headed out to meet your EYL family!

You continue to amaze us all; keep up the good work Baby Girl!