April was a pretty calm month - not a lot to report on! You had a fun time going with Patches to his training classes and got pretty good at telling him to sit. So good in fact, that your teach told us you started telling the other students "No. Sit." very forcefully and commanding-ly (??) when they would try to stand up during circle time. Proud parenting moments. In particular, you have enjoyed the fact that the classes take place in the park where there are slides and swings!
We did have an appointment with the Pulminologist and while she isn't ready to discharge you quite yet, she did move you to an every 12-month appointment. Between 5 and 6 years old she wants to do some lung function tests and continue monitoring those results to give us a better idea of what to expect as you continue growing.
May has been a whirlwind; I can hardly believe we're already at the end of the school year! Your speech therapy has been decreased to once a week because your feeding issues have significantly improved! Now their primary focus is clearing up some articulation issues and working on conversational speaking.
Biggest news from May is that we scheduled your first foot surgery - we will start casting on June 5 and have your surgery on July 19. While I am not looking forward to you having to be off your feet for 12 weeks, and in a cast all summer when you are just starting to fall in love with the water, I am excited for this procedure to be taken care of. It should be the last major procedure until you are between 7 and 10. I am also thankful that our PT encouraged us to go ahead and get the power chair process taken care of so that you are already used to driving your chair around. It will be interesting to start transporting that with us all summer long!
We are working on reducing your tube feeds - your oral intake has shot up in the last few months and you started telling me "no green food" more often because your tummy was too full for anything else. I've been playing around with your blend and have figured out a few options (one for on the road and one for at home) to get the same amount of calories into you, but at a lower volume so you can still eat. There are days when I feel like that's all you do - your food list has expanded greatly: cheerios, fruit loops, pretzels, crackers, chips, chicken, french fries, broccoli, carrots, corn, apples and peanut butter, bananas, potatoes, sweet potatoes and (most importantly) SOMEGHETTI! You will eat and eat and eat if we have spaghetti.
We had some fun last week with a photo shoot we've been wanting to do since Christmas but just now made the time for - you and your babies in your Frozen outfits and matching boots! I am so so so thrilled with the way the shots turned out, and to start working with your Loftstrand Crutches! I don't know that we'll get them figured out before casting starts and you're off your feet for three months but you've had fun trying the last few days!
I think that's all for now - my brain is a little fried with end-of-school activities and appointments and schedules so I'm sure I forgot something! June and July will be busy, exciting, different and anxiety-inducing (at least for me) so I'm sure there will be a lot to report on then!
AMC Awareness day is June 30 of each year. This year I had the unique opportunity to tell your story and share about AMC while we were at EYL Camp. In addition, the group took up a collection that we were able to take to the AMCSI Conference the very next week - what great timing!
You're probably asking, what does all of that stuff that happened in June / July have to do with a post in September? I've had several people ask me about the presentation I gave at camp and I FINALLY got it made into a video to be able to share with everyone! Building the presentation took quite a bit of mental (and emotional) effort - it was both amazing to look back at how far you've come and heart-breaking to look at how close we came to losing you a couple of times!
So here is that video:
Now for the fun part: you have made SO MUCH progress since June!!! Going back to the presentation just two short months later, it amazes me how out of date it already is!
We got your trach stoma closed in early August so we are completely through with that. Just yesterday we had a follow up with the ENT and she cleared you for aqua therapy - which is great because you LOVE the water!
She was pretty sad though because she is out of reasons to keep seeing you! She went ahead and scheduled one more check up in 6 months "just to make sure", but after that we are down one specialist! It's a bitter sweet thought because Dr. B has seen us through so much and has always been open and honest and direct with me about what's going on!
The clips in the video presentation show you slowly moving in your walker, but in the last two weeks it has finally clicked that you can go on your own and now YOU ARE GONE! You started chasing puppies at our family reunion over Labor Day and every day since then (with the exception of one or two) you have spent at least 25-30 minutes walking. We've gone from spending 30-45 minutes in your HKFOs to almost 3-4 hours straight - which the doctors at Shriners should be thrilled about. At the last visit they said they wanted us to work up to 7-8 hours a day and we almost laughed because we thought we were doing good to get the 45 minutes!!
My favorite walking experience in the last couple of weeks would have to be you walking into the NICU yesterday and getting to see your doctor, a few nurses, AND your PT, OT and ST all happened to be right there when you walked in. There might have been a few tears.
It is so hard to believe that we have only been home for two years now; but at the same time, every time we go back to visit it feels like a lifetime ago!
Most of our walking has been done outside - you've now mastered walking in grass, on sidewalks, going uphill and downhill, on asphalt and on dirt paths. Our neighbors have been pretty patient with us as we take up the entire sidewalk...and walk down the middle of the street sometimes.
Having family close by has given us a walking goal as well - the first week we were walking outside and you got it in your head to walk to Mimi and Papa's house (at the other end of the block). We made it across the cul-de-sac and past one more driveway before you gave up - but have asked a couple of times since then to walk there again! You've also really enjoyed taking your walker to Bible class and walking around the church building.
Slowly but surely making it to Mimi and Papa's house!
So we're just waiting. Patiently. Not so patiently but trying to pretend it's patiently.
You slept well during your sleep study; they only had to adjust the sensors twice. You were a little smarty pants when we got there - you started pointing to all the spots on your head where the sensors are supposed to go. Two years old and seven sleep studies later...you know. We won't get the official results until we go in on April 6 for your airway evaluation...which is where the waiting patiently comes in.
This isn't as much an update as a chance to post something while we wait for Wednesday and to let everyone else know that we don't know anything yet.
Here's some showing off instead -
You can count to 10:
And say your ABCs:
And you finally figured out how to get yourself down on the ground, and then back up again:
Lastly, we got this new toy from your PT yesterday and the first thing you wanted to do this morning was get back in it and GO!
I know a lot of people have been waiting for this update (sorry) but I wanted to wait until you got through a few appointments to update everything all at once!
Feb 4 you had a check in with the Nutritionist / Dietician. For the first time in who knows how long you had weight GAIN! Not loss, not stalled - significant weight gain. The official change was 9.3kg to 9.7kg (about 0.88lb) which might not seem like a lot, but you've been stuck for the last six months so it really is monumental! We have been weighing at home every morning since the transition to blender diet (BD) started and on our scale you've gone from 20.5 lbs to 22. The best part of the appointment was seeing everyone's faces when you walked into the office in your gait trainer. We also went and visited your friends in the NICU and theywere pretty thrilled to see that too :)
You have taken the feeding changes like a champ - most of the time there was not even a reaction! When we transitioned to BD you were to receive 135mL every three hours, six times a day. After we made the transition we increased your volume to 170 per feed (which was enough to drop one feed!) by increasing about 5mL every three days. After your weight check we've worked on increasing it even more with the goal of getting you to tolerate up to 200mL so we could drop to three feeds of 200mL and two "snacks" of 100mL. We've been able to increase 5mL each day with no issues! So as of Sunday, you are in a little bit more of a normal schedule - three meals and two snacks. Now we just need to work on the times!
Over the next few weeks, I plan on substituting out some of the ingredients and start blending by meal instead of one blend for the entire day. The idea is to start using more breakfast-y foods for breakfast (fruit, milk, oats, etc) and then chicken and veggies, or some mix of protein and veggies for lunch and dinner. We'll get there - eventually!
You got your last dose of Synagis (RSV preventative medicine) on Feb 11 and they were pretty impressed to see you walk into their office in the gait trainer as well!
The last update is from the ENT appointment yesterday. We went back and forth with a lot of different options and scenarios and here's where we ended up:
IF the sleep study results look good enough at that point;
AND IF there is no granulation tissue that needs to be removed;
AND IF the ENT determines that your airway has grown enough that she's comfortable with the anesthesiologist at Shriner intubating you for your foot surgery ---
You will be admitted to the PICU and your trach removed. You will have to stay at least one, possibly two days and nights in the hospital for observation.
Alternatives:
1) If the sleep study still shows to much apnea, she'll still do the MLB because that has to be done once a year and that will be the end of this round.
2) If there is granuloma she'll have to remove it and then give Lexi a bit to recover.
3) If the airway hasn't grown enough for her to be comfortable with the anesthesiologist trying to intubate she will write a letter for us to take with us to Shriner at the end of April encouraging them to schedule the foot surgery soon because that's the only thing standing in the way of taking the trach out.
SO - lot's of variable, lots of could best, lots of hopes and lots of prayers needed...mostly for Mama's patience.
To leave you with a bit of cuteness, watch these videos - we've almost got everyone's names down!
On Monday we got the most exciting, forward motion news we've had in a LONG time...
I've spent the last month or so looking into, researching, preparing and planning to ask your GI doctor if we could switch to a blender diet (BD) and get you off of the formula. Most of the things that I've read or looked into (found some GREAT support groups on Facebook and TONS of recipes!) lead me to believe I might have to do some convincing so I went in to the appointment with a transition plan, recipes broken down by nutrients, all sorts of information - I was ready to make my case. I never had to pull out the folder! Your GI doctor just said: "Ok. I'll have the nutritionist come visit with you. Anything else?" "Um - nope!"
So they came in gave us a transition plan that is MUCH quicker than the one I had out together, gave me a simple blend that has everything you need for the day to get us started (so I only have to make one blend and then divide it out) and said "come back in a month for a weight check and we'll evaluate and make any changes we need to." YES!!!!
I wanted to make this switch for several reasons:
1) By two, very few (if any) kids are still on a diet that is primarily formula. Yes, you are eating orally, but not enough to gain weight. You've maintained a steady 20.5 lbs for the last 8 Mondays, but no gain. I knew they would want to increase your calories since you are SO much more active now, and didn't want it to be more powder. You need food.
2) All of the things that I have read about being on a BD point us in a very positive direction: weight gain, less constipation (meaning dropping a daily medication!), better nutrients always lead to overall better health, and even the possibility that you will actually start eating more orally as your body begins craving real foods with all the nutrients you need.
3) We need to get you off of the night time feeds. One of the main reasons you aren't hungry during the day is because you get formula pumped into your stomach all. night. long.
So here's where we're at:
Tuesday we started a new feeding schedule. The dietician wanted to move all of your feeds to the day time to see how you tolerated getting that volume in a shorter amount of time. So this is now our daily feeding schedule:
Starting next week we'll replace one formula feed a day with a blended feed. By next Saturday you should be completely off of formula! They gave us a blend that I can make once a day, so I spent all day yesterday cooking, cutting, blending, chopping, freezing, measuring, weighing, portioning and getting everything ready. Adding weekly tasks and grocery items to various lists. I *think* I will be able to spend about 2 hours every Saturday getting everything ready so each morning all I have to do it dump in x number of cubes of this, of that, a bowl of this and a scoop of that.
Peas, Blueberries and Spinach
Side result - lots of good chicken broth saved up!
Coffee cans work great for storing in the freezer!
You've done fantastic the last two days on the new feeding schedule, although you are NOT thrilled about waking up an hour earlier than usual! You've tolerated the volume change without any issues and have actually already started eating more by mouth, more often during the day! We're not sure if it's because your stomach is being stretched a little bit more or what, but yay!
Side bonus: we're now using a feeding method called "gravity feed" where we let your stomach accept the liquid accept the liquid as quickly as it chooses which means we're no longer fighting the pump AND your feeding times dropped from 30 minutes to about 5!
We have one month to get things going, get adjusted and see how you handle this basic blend. We'll go back in February for a weight check and see where to go from there! Hopefully we'll get to branch out into other blend recipes, include more variety and play with the recipes some to fit our usual grocery list. The eventual goal is to get to the point where I just toss whatever we're eating into the blender and feed it to you.
BIG changes - hopefully we'll see some BIG results!
This isn't the typical update post, but it's been something I've wanted to write about for awhile now and fits in perfectly with the season of Thanksgiving.
I saw this meme about a month ago and had to laugh:
I think most of us have both happy and painful memories of these things in PE class, but all of those have been erased by my new memories of this wonderful, magical, flying carpet device... Memories of your freedom. Your exploring. Your helping. Your growing!
When your PT first brought this to our house, you were VERY unsure about it. Your balance was pretty good sitting still, but not so much moving. You fell off a few times trying to figure out how to make it move and were done with it. You were ok putting stuff on it and banging it on the floor, but would scream if we tried to put you on it. We didn't push it and it sat in the corner of the kitchen gathering dust.
Fast forward six months: you've figured out how to scoot around on your bottom and love the freedom you have to roam around and try your best to get into things; we finally had to baby proof the house at 18 months.
One day we decided to try the scooter again - and you flew! You got your little feet going and were gone. You learned how to turn the whole thing instead of just your body so you've only fallen off once or twice - usually because you got your feet moving too fast for the scooter to keep up!
You learned how to open cabinet doors so now I get these greetings when I'm cooking:
You like helping unload the dishwasher (but don't understand why I won't let you play with the dirty dishes):
You have a new trick where you just sit and spin in circles - but not when you know you're being filmed. You also like to scoot laps around the table.
Most importantly, it gives you just enough height to reach the bottom shelf of the pantry where all of your snacks are now stored - talk about freedom!
What once terrified you beyond belief has turned into your favorite thing ever and has given you the freedom and mobility we've been dreaming of when it became clear that you would never crawl (too much pressure on your shoulder joints) and walking was still quite a way into the future. It's the first thing you ask for once we get downstairs and usually what we are picking you up off of when it's time to get ready for bed.
We were hoping for crawling and you learned how to fly!
So we went to our appointments on Thursday, got the "official" sleep study results, went to your weight check, and left with smiles on our faces :)
Here's a little side-by-side comparison of this sleep study with the last one in June...
There are links in the last post to what the big words mean :)
Needless to say, both the Pulminologist and the Sleep doctor were THRILLED with the difference. Who knows if it was the congestion, the sleep tech, the equipment, or what in June - but here we are. We officially downsized your trach back to a 3.5 on Friday, and the cap is back on! You haven't had any trouble so far (it's only been two days) and slept just fine last night so hopefully you can keep it up. The next sleep study is scheduled for October 14 to see how you are doing capped and off the vent - then we'll talk timeline for removal!
I mentioned to the pulminologist that Shriner is waiting for the trach to be gone before they consider the foot surgery, and that it would be great to go back in November without the trach. Her response wasn't promising - but maybe we'll at least have a timeline by then to be able to get things rolling. (Her main concern is taking the trach out before winter really sets in, just in case you get sick and need the support - understandable but BLAH!)
After that appointment we went over for your weight check - you've gained an average of 6 grams a day since we were there last. Not stellar, below average, but it's still an upward trend. We talked with them about the milk allergy and they've switched you to a different formula that's made without any dairy whatsoever. The good news: you seem to be tolerating it well so far (again, only day 2); the bad news: Mama gets to wash bottles two times a day (day and night shift) and measure formula and it smells. I'll manage :)
To offset the barely there weight gain - you grew 8 cm (about 3.14 inches)!!! There have been several comments made in the last month or so about how tall you were looking, but we just attributed it to the fact that we got your leg braces, and they're already making a difference in how straight your legs are. Apparently, you did some growing too!!! The dietician didn't believe it at first and asked them to remeasure, but sure enough - 8 cm!
So the last two days we've been floating on happy news - Daddy was home with us all day yesterday (unusual for a Friday!) and you enjoyed getting to spend some time with him. Today we've been lazy - you did some playing, took a nap, played some more and spent some time in your gait trainer. You really love being in that thing - and usually head straight for the back door to look outside!
So this afternoon we decided to go try out the new patio that Grandpa, Daddy and I worked so hard on! It was mildly successful -
Right after this, you backed up too far and hit the downward incline on the edge and it sent you rolling into the grass...you weren't too thrilled about that :( I had just gotten you calmed down from that when you backed your head into the table I had just moved outside... we were done with walking for the day! On the plus side, we got the gait trainer adjusted so that you can't lean back so far anymore and it's really making a difference in how well you're able to move your legs and propel yourself forward!
Keep moving forward - we'll get you a mirror for backing up!
So I would love to be able to blame not posting in so long on the fact that we've been busy with back to school stuff....but that wouldn't be completely truthful :)
So here's what's happened in the last 3 weeks:
If I had posted on August 27, I would have talked about how awesome you did in your new boots the first week and how being in the leg braces at night didn't even phase you! They had initially told us we might have to wean you in a couple of hours a night, but you took to them with no problems and didn't even move the first night they were on!
I would also have talked about how hilarious your face looked when you got to the top of the stairs and realized that there was a gate in your way now...you were not pleased. But it has turned into a fun game of throwing balls down the stairs and watching them bounce ally the way down.
The last thing I would have talked about is finding a super cute Halloween costume for you, but I wouldn't have said what it was :)
If I had posted the next week, on September 3, I would have talked about how you don't like throwing things down the stairs as much anymore because your therapists made it into a standing "game" that you don't enjoy near as much! I also would have complained a little bit about how BIG you look standing at the top of the stairs!!!
I probably would have also mentioned how much you have enjoyed your new found freedom to "roam" the upstairs and how gracious Sisters have been in letting you explore their rooms (for the most part)
Last Thursday, I would have talked about how we had to take you in for you 18 month appointment (only a few months late...) because I had to talk to the doctor about something and realized that we never scheduled your 18 month appointment because your doctor was out of town, and then we were, and then she was.... and how unhappy you were with the two shots you got. We were also finally able to really talk to the doctor about your allergy test results from June. Your overall allergy indicator was normal (meaning no allergies) but you have a slightly elevated (2 out of 6) indicator for cow's milk and egg whites. Confusing test results for you? Shocker. So your pediatrician would like for me to talk to your nutritionist and GI doctor about switching you off of the PediaSure (yay! and nooooo more changes!) onto something that has no milk in it. Her thought is that there are several things that might clear up with this: 1) I was never on a dairy free diet when I was pumping, then you went straight to whole milk then onto 2% because it upset your stomach so much... switching to something with no milk whatsoever could help clear up the constipation issues you've always had. 2) You've had a perpetual rash around your g-button and bottom that could potentially be caused by the milk allergy; and 3) since it's such a slight allergy, it could be contributing to the amount of phlegm you've always had. We shall see.
But I would have countered all that news with the fact that your leg braces are already making a huge difference - we had to adjust your stander because there is already a difference in how straight your legs are! I would have posted this picture that shows you standing BY YOURSELF and talked about how excited we were that you stood for almost an entire minute before you realized no one was holding you up!
I also would have talked about getting the most exciting phone call on Friday - your gait trainer was ready!!! And how that was perfect timing, because we had already made plans for Grandpa to come help us turn our front "garden" into more of a patio so you could join us in our inclined front yard without having to worry about you rolling down the driveway!
I would have also talked about how excited you were when the gait trainer actually got here!!! And how quickly you took to it... kind of. You were not wanting to get in it at first, and then you slammed your feet down like you were stomping and it made you move. You froze. Then got a big smile like you remembered what this was for!!!
But then about 15 minutes later you were an old pro at it :)
You've done really well - you've stayed in it about 30 minutes each day since we got it before you start getting tired of it.
I also would have talked about how nervous I was about your sleep study that night since you had been congested and coughing for a little over two weeks. It's almost like you knew that it was time for another sleep study and got sick... Maybe I would have even waited until Friday so I could post this picture of you and talk about how much more patient you were with the sleep lab tech in getting everything hooked up, and how it didn't take them nearly as long this year. But then I also would have had to mention that I had NO IDEA how the results were going to turn out because you kept coughing stuff up out of your trach and into one of the sensors so they had to wake you up every hour to change it and you did NOT like that; and how I was not looking forward to waiting a week to find out the results.
So that's what all I would have said if I had written each of those posts...Why am I posting today you might ask? Because today your pulminologist called. She is usually the one that gets to deliver the bad news (She has an underdeveloped lung; she needs a trach; she'll be going home with the vent; her sleep study results were invalid/ inconclusive/ confusing/ really terrible...) so she wanted to call and give us some GOOD NEWS:
Your sleep study went REALLY WELL! They want us to reduce the size of your trach again, go back to capping it at night and being OFF THE VENT, and that the sleep doctor has reserved a spot on the October schedule to repeat the study with the trach capped off to verify that the results from the June sleep study were a fluke and that you're ready to be off the vent and the trach come out!
I am SO glad she didn't make us wait until Thursday to find all of that out :) Sisters and I decided to celebrate when I picked them up from school!
So now this Thursday I can give some good news from them, and hopefully some good news from your weight check and visit with the nutritionist about the allergy issue.
Things have been SO crazy since sisters came home but you have absolutely loved the attention you've gotten from them. You definitely missed them when they were gone!
Your attitude has continued to...evolve (I'll use that word instead of others Icould choose...) You have good days and bad days. When it's a good day you love everyone and pass out hugs and kisses like they're pennies. But on your bad days (like today) you latch on to grudges of any perceived slight (like someone asking if you're hungry or want to play) and those smiles and kisses become more like diamonds.
Your love of anything crunchy has popped out over the last week or so and I'm pretty sure you've devoured a box of cheerios all on your own! You have gotten back into eating more of your vegetables and Mama finally remembered to get some more sweet potatoes and a butternut squash. Yesterday, you wouldn't eat anything (teething) but I handed you a chunk of sweet potato and you went to town! You are definitely in the phase where you want whatever is on Mama's plate (even if it's the exact same thing as your plate) and have started helping yourself to whatever you see.
Chicken Express roll anyone? I missed the shot of her grabbing the drumstick...
You have added three more signs to your list: bubbles, drink/water and yes. You aren't able to do them exactly correct because of your limitations, but you've done them consistently enough that we know what they mean. You've also added the bababababa and papapapapa sounds to your rambling so when you talk it sounds like mamamamamabanapapapapababamamamama. Apparently, whatever that means is REALLY important though because you always have a super serious face when you say it!
You have really enjoyed playing ball this month - especially with Little Big:
You recently discovered our rocking chair and had a blast in it - you've sat in it before with Mama but this time it was apparently WAY more fun!
Another super fun activity we've been enjoying is bike riding! We finally found a baby seat that wasn't a million dollars and you have gone riding with Mama a few times. You were really hesitant about the helmet at first, especially after I buckled it under your chin, but the ride made it worth it!
Bath time is still your favorite, but now you do a lot more playing with your toys than just splashing. You like lining up your duckies on the edge and have figured out how to put the bowl on your head all by yourself! Yay for arm range of motion :)
We got new AFOs (boots) today, as well as shoes for when you're standing to help encourage you to bear weight more. They also made some braces for you to wear when you sleep to help straighten out your legs / knees more. It was a long trip, and you were tired, cranky and teething, but we survived! The doctor said it might take you a few nights of getting used to the braces before you made it all the way through the night, but you are currently snoozing away without a care in the world about having something strapped to the back of your legs.
Keep growing and shining and loving people Silly Girl :)
So not a lot of information in this week's post, but a lot of new talents to show off :)
We did have the weight check appointment on Tuesday - you lost 0.2 pounds. POINT TWO POUNDS. That's 3.2 ounces. You have three new teeth coming in and had been sick with allergy mess for the last week so 0.2 pounds is not that big of a deal. BUT, they didn't make any changes. We go back on May 12 for another weight check so in the next two weeks we will be packing you full of every high calorie anything that you will eat!
In other news, you got fitted for your gait trainer and hated it. At first. Just like everything else. But the second time we put you in it, you did awesome! We have a little bit more waiting to do because they need to get you a smaller frame so we can't use the company's demo like we had planned, but because you took to it so quickly, we have a really good chance of it moving pretty quickly. You will be getting the teeny tiny one all the way on the left side, in lime green :)
A few other fun tricks we learned this week:
Sitting on the stairs, talking to Nurse T -
The next thing we know this was happening:
You love knocking down block towers...but lately it has become a total destruction method. No block left standing:
You discovered how much you like apples:
And last night, we found the remote to the mobile on your bed and didn't realize it had batteries in it. You quickly figured out which button to push:
It seems like these posts come quicker and quicker each month! You continue to grow and surprise us each month with your progress and this month you have certainly shown that you are ready to shine bright!
You are completely off of the ventilator 100% now. In fact, it hasn't actually even been plugged in or hooked up for just in case moments since last Wednesday! We're having some trouble getting you adjusted to the trach collar...because you don't need it! It's causing your secretions to be way too thin and difficult for you to manage when you are asleep so we're actually working on getting authorization from the pulminologist to get rid of that too! If she approves, you will just be sleeping with an HME (Heat and Moisture Exchange - aka artificial nose - a small filter that provides humidification just by breathing) and NO MACHINES whatsoever!
You are doing FANTASTIC with weaning off of the tube feeds. You have been eating like crazy and in order to make sure your weight gain is good before next Tuesday, we've pretty much been letting you eat whenever you're hungry...and you've been letting us know! You are currently eating three meals a day (by mouth) and three to four small snacks in between (mostly the Gerber puff snacks). We introduced you to a few new foods this month and you have just devoured them! Here's what all you're eating:
Purees: carrots, broccoli (as long as it's mixed with something), apple sauce, mashed potatoes, sweet potatoes, butternut squash, green peas, sugar snap peas, avocado, corn, bananas, oatmeal (as long as it's made with apple sauce and not water)
Solids: teething crackers, puff snacks (particularly the cheddar cheese ones), french fries, steamed carrots, macaroni and cheese, cheese puffs (oops...), Chick-Fil-A chicken nuggets
Tried but didn't like: green beans, pancakes, grilled chicken, scrambled eggs, most breads
You are also doing super well drinking water and learning how to get it out of a cup - can't wait to see what they say next week!
Your PT is thrilled with how well you're adjusting to the stander after such a short amount of time. The goal is to get you up to one hour a day; we started with one 10-minute session; bumped you up to two 10-minute sessions, and yesterday bumped you up to two 15-minute sessions and you're doing great! We put the tray on the stander today so you had a book and the TV going and were as happy as you could be! Your new boots are working fantastically and your scooting is getting a little more solid every day. You will be mobile before we know it! ALSO - in two weeks the representative from the company that we got your medical stroller from will be coming by to fit you for a gait trainer; they have a small one they can loan out for trial periods and they think it will fit you! SUPER excited about that!
OT is continuing to work on helping you get more use out of your hands, arms and shoulders. You are doing awesome with continuing to stretch and strengthen your arms - reaching behind you, up and out to the side, and grasping things with your fingers. We're still working on some tummy time and lifting exercises because you will need to be able to catch yourself once you start walking and you still don't like those too much.
Speech Therapy is just as excited as we are about the progress with the feeding and even more so the progress with getting the trach downsized and gone! Once the trach is gone we can actually start working on SPEAKING instead of signing. We're already doing a little bit of rewarding to get you to use your voice when you want something instead of just pointing, but you still are only vocalizing the short a sound. Your signing is above fantastic - most babies around your age know 2-5 signs and it's not until around age two that kids will start using two-word phrases (whether they are speaking or signing). So far you can sign: Daddy, Mama, eat, more, finished, please, thank you, open, bath, bye-bye, up, close and can identify your eyes, nose, teeth, tongue, ears, hair, feet and thumbs. We're working on cookie, cracker, help and sister but those are a little more involved signs. (As we continue learning signs, they are becoming more and more difficult because they involve individual fingers or being able to reach or rotate your hands that you aren't quite ready for yet). You are also asking for: more bath, more eat, sleep please, open please, bath please, up please, and more sleep on a regular basis.
You continue to amaze us all and we are so proud of you. We got some shots recently of you out in the pretty spring wildflowers and I think they pretty much sum up how expressive you have become and how amazing your personality is developing.
You will now smile when we ask you too - a super cheesy, big smile...
And you love sticking your tongue out
You've got three more teeth coming in so if the tongue isn't out, the finger is in
You love watching your feet kick - it's your favorite thing about being in the shopping carts
You have also learned that if you make funny or weird faces, someone will laugh at you :)
This is your super excited face - we usually get this one when we guess which toy or book you are pointing at correctly
You love sitting up on things and showing how big you are!
Happy Birthday and Merry Christmas and welcome to the New Year! It's officially 2015 and I'm going to get things started off right by getting the blog caught up and staying caught up! So, those are links to the posts that should have been written the last two weeks - and since I didn't write them, they're mostly pictures :)
We had your one year appointment on December 29 and Dr. R said everything looks great! You have lost a TINY amount of weight, which we blame mainly on two things.
1) You have completely revised your nap schedule over the last month. You dropped your morning nap and have instead started taking a two to two and a half hour midday nap and being completely cranky and ready for bed as soon as your bath is over. Tons of fun. But that also means that you aren't awake for your lunch time feeding by mouth. In the follow up to this post that I never wrote your pulminology (everything looks good - no changes, just a goal of getting through the winter with no major illnesses) and weight check appointments went well - they adjusted your night time feeding to end sooner so that you would be hungrier in the morning and eat more at breakfast, but that hasn't worked as well as we hoped. So you've essentially cut your feedings by mouth in half.
2) We've been on the road and traveling a lot over the last few weeks in addition to being completely off schedule so there have been days when you are just not at all interested in eating because there are way more interesting things going on!
Other than your weight dropping slightly, you are doing excellently.
We had a whirlwind of two weeks of presents between your birthday and Christmas so then we had to make room for all of your new things - yay reorganizing project for Mama! We got some things moved around in your room, worked on your closet, and added a shelf to have room for all of your toys! You absolute love your new chair from Grandpa and Nanny (via Papa and Granny when I was a little girl) but you look like such a big girl in it that it breaks my heart a little bit! Aunt C got some wonderful pictures of you in it for your one year photo shoot!
Such a big girl!
Yesterday, we went to the developmental clinic for your six month evaluation. We got to see one of our favorite nurses from the NICU who moved over (she was actually your first nurse when you got admitted) and your PT from the NICU...you were a little unsure of her at first, I think you remember all the casts she put you in :)
You showed off most of your tricks brilliantly for the doctors and they were really impressed at how far you've come! You gross motor skills (sitting alone, transitioning from laying to sitting and back, starting to pull up to standing, crawling, scooting on your bottom, etc) are at about a 6-7 month age level and your fine motor skills (using your hands and fingers, picking things up, transferring hand to hand, putting things in and taking them out, bringing your hands to midline, etc) are at about a 7-8 month age level. It was kind of discouraging to hear how far behind you are when I get to see EVERY DAY how hard you work and how far you've come, especially just in the last month or two! But it also gives us a goal to get to. Your PT is 100% convinced that you have the will and determination to learn how to walk so she is working on a plan to get some special equipment to help with that - the biggest hindrance in that your hip and knee joints are still pretty tight so we will be talking to the orthopedic specialist next week at your appointment about what we can do to help straighten those out.
On the other hand, the developmental specialist said that cognitively you are AMAZING. Your receptive language skills are great - you listen and understand and know what we're asking you to do; your expressive language skills are a little bit hampered by your inability to vocalize with the trach but he was thrilled that you are so expressive about your needs / wants and that you already know so many signs and seem to be picking them up pretty quickly. He was also thrilled that you're tolerating your speaking valve so well. We will continue working on sign language as that will most likely be your primary language for a while but he has high hopes that it won't be a problem for you to communicate!
So the biggest things to work on between now and June are: transitions (laying to sitting to standing); arm strength; movement (crawling and scooting) and continuing to learn more signs and communicating.
We are so proud of you Baby Girl and can't wait to see what's next for you!
All dressed up in one of your new outfits for the appointment
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!
