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http://www.tracheostomy.com/faq/speech.htm
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G Jane's Story |
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![]() Hello all! I am writing to tell you about our first session with our new speech therapist! The pictures have no correlation....I just like to post pictures :) Anyway, Gracie has had speech and occupational therapy from about 3 months of age until about 16 months. Then we took a little break to do some "normal life" stuff and move up to Chandler. Up until this point, her therapies centered around feeding, but we are now able to move on to help Gracie form all of her wonderful sounds and signs into words! This link gives a great explanation of speech and possible delays with regard to pediatric tracheostomies: http://www.tracheostomy.com/faq/speech.htm ![]() We lucked out and found a "Speechie" who is an ASU professor and specializes in kiddos with trachs! Double cool :) She has a graduate student join her and they work together with Gracie in our home once a week. I liked them both very much- professional, organized and very focused on parent involvement. They did an evaluation today and seemed very excited with Gracie's abilities ie her tolerance of capping the trach, her expressive sounds, her signing and use a few words and her understanding of language.They even suggested that we may be able to get her speaking in two word sentences by her second birthday (March 3rd)! ![]() Gracie was thrilled to show off her toys, her sounds and her dance moves for our new friends. She also loved all of the therapy toys that they brought and was very sad to see them go...a special red ball, in particular :( After our session I was reminded how much energy it takes for both myself and Gracie to focus on therapy for an hour. That is a long time for a 22 month old! So I forgave her little "red ball melt down" because I was tired too! We watched some curious George and had some lunch and that seemed to help. She was just so excited to meet some new people that it is still taking a while to unwind. Translation- someone does not want to go down for her nap....poor mommy! ;) So we will keep you posted on G's progress and, hopefully, lots of new words!
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![]() Good morning my little eye crosser! ;) Happy Christmas! http://youtu.be/TVDbndNQ_Xw It was far too exciting a morning to wear her glasses, but she did a little "talking"! Trust us, she can be MUCH louder than this but here are a few sounds and "words": http://youtu.be/0xPEcaoB8ww Note: this is without her trach cap on so she has come a long way! We will be starting with our new speech therapist after the New Year and we are so excited for these in-home therapies (that G has had all along) to focus on actual speech rather than on feeding. ![]() Santa brought Gracie a big Magna Doodle! http://youtu.be/wdAIRjmU2fA She also received some special Signing Time videos (our favorite!) to help with speech delays and potty training- thanks Grandma! Gracie wanted me to tell you that, along with signing, she has also become an accomplished finger-painter and cookie decorator as of late! ![]() This is Gracie with her new bean bag chair and Leap Top "computer"- fancy business!! Please note her use of the pink helmet which she continues to put on every time she opens her Leap Top.....safety first, I guess! ![]() Grandpa and Grandma Mary placed a special order with Santa for this new big girl trike and helmet! WOW!!! ![]() Yahooooo!!!!!!!!!!! ![]() Gracie helping Daddy open his gift that she made for him which was....wait for it.... a finger painting! Yippee! Ramsey and I truly enjoyed every moment of watching Gracie light up over every bow, holiday song, cookie and gift. But the BEST present is that we have the privilege of watching Gracie grow and thrive. She has come SO far since last year at this time and we are beyond thankful. Ramsey and I are also continually touched by the generosity and love shown by our friends and family, but especially from Scout and Ranger, Grandma, and Grandpa and Grandma Mary. Grandparents RULE!! THANK YOU!!!! ![]() This morning we had our MOMS Club holiday party and SANTA was there!!! Woo hoo!!! This is the first time we have ever gotten to meet Santa or have our picture taken with him as last year we still weren't leaving the house with Gracie. We talked about Santa and watched Frosty the Snow Man this morning so she could see that he was a friendly guy and not too intimidating. She squealed with delight when he walked in the door, but St. Nick was quickly upstaged by her special new Magna Doodle ;) ![]() Note: she has a tight grip on her special gift and was so busy drawing that she didn't mind sitting on Santa's lap for a photo! ![]() Now the reason for not leaving the house for pretty much G's first 13 months of life was to protect her from RSV and other such illnesses that are very, very bad for kiddos with airway issues, let alone a trach. But this year she is bigger, stronger, and has now had all of her vaccinations. We are still careful about hand washing and hanging out with anyone who is feeling under the weather, but it feels great to be out in the world!! But we still must be vigilant and take those extra precautions to keep germs away from Gracie's trach area. We had a little reminder last week when Gracie's stoma (the hole in her neck where the trach goes) got irritated and then a little infected. It could be from touching it and transferring germs, or it could be that she has FINALLY started sleeping in her Big Girl Bed instead of her swing (yes, a baby swing and yes it was getting ridiculous). In the swing Gracie was sleeping in one position so nothing was really rubbing or tugging on her trach. Now in her toddler bed, she can sleep any which way and I suspect it takes some getting used to when you have to contend with a tube sticking out of your neck. So that could have irritated it, but who knows? The bottom line is, we called our ENT straight away and got an oral antibiotic and extra cleaning instructions. Between that and some breathing treatments, it cleared up without turning into anything scary (ie respiratory infection). Phew! ![]() Now I am just posting gratuitous cuteness because, well, she's CUTE!!! ;) She loves to put her dolls to bed in her doll house, feed them, etc. She is practicing to be a great big sister!! ![]() Reading a story to her friend Belle :) Please note the kitty cat hair bows that she finally has enough hair to sustain! ![]() Well, we took our pumpkin to the patch on Sunday and she had a blast! We went to Mother Nature's Farm in Gilbert which I totally recommend if you have little ones. There were animals, a little hay bale maze, and a pumpkin "forest". As you can see here, she wore her lady bug costume :) ![]() We had to explain to Gracie that she was not to throw the pumpkin like a ball....oops! ![]() Miss independent, walking around the animal farm with Grandma! ![]() Snack time! ![]() We enjoyed the animals, watched the hay ride (maybe next year sans trach... too dusty)... ![]() and they even gave us a bag of stickers so Gracie could decorate her pumpkin! Then everyone needed a nap! Now isn't that sweet? Yes, Gracie had a great day and can be a very good girl. There have been many exciting new things to do now that we live up in Chandler. And sometimes it gets a little overwhelming as we are still getting used to being around people- ha! So I bet you're wondering, "why did Lauren put this under the trach section?". Well, mostly to show that even though G still has her trach, she is finally getting to do some normal things...and so are we! But on certain days, like today (Tuesday) I am reminded that we still have some extra challenges. Little Miss Pumpkin and I went to the playground this morning. Well, when it was time to pack up and go and have lunch, Gracie decided that this plan was no good. She was so mad that she looked right at me, grabbed her trach, and pulled it right out!! Yup! On purpose while giving me this naughty look!! Oh yes, this is our sweet little angel's new trick and it's not a treat! But Mommy said it was time to go, so I had to stick to my guns! So I ran her to the car (running 6 months pregnant with a trach hanging out of my kid's neck) and did a trach change in the front seat. Phew! Then we drove off and went about our day. She must have gotten this stinker-ish behavior from Ramsey because she surely didn't get it from me, right? Oh dear...... Happy Halloween everyone!! ;) ![]() Well, I am really writing to tell you all about Gracie's most recent airway scope which was on Oct. 4th, but the REALLY important question is: what should she be for Halloween?? Lady Bug? (there are wings too) ![]() Or Kitty? Please note the eye patch which adds a pirate effect to each ensemble....choices, choices...;) ![]() So you can see that this little monkey doesn't let anything hold her back! And just to prove yet again that she is super awesome, Gracie was a rock star for her airway scope which showed great improvement regarding her trachealmalacia. Her upper airway still needs more time, however, so the trach will stay with us for a while longer. Her epiglottis and back of her tongue are still creating enough of an obstruction that if she got sick, the residual swelling could spell big time breathing trouble. My biggest fear is not how long she will have her trach, but rather getting it out too soon and possibly having problems.Or worse yet, having to be re-trached. So the great news is that there are no procedures or surgeries necessary. She just needs time to grow and that is music to our ears! How lucky we are! Phoenix Children's Hospital once again made a potentially stressful morning as easy as they possibly could. Gracie never cried and I......well, I barely did. I think this is pretty good considering I am a hormonal preggo! Ramsey was ever-calm under pressure and had everyone in the waiting area smiling as he played with our sweet girl. So we will visit our ENT in 6 months when we will discuss scheduling another scope. I hate that G has to keep going through this procedure, but it's the only was to know for sure when she can be safely decannulated. And did I mention that Gracie and I were camped out at my mom's house all week while Ramsey moved us form Casa Grande to Chandler? Phew! So we are ready to take our time settling into our new home which is closer to all of our doctors, Ramsey's office, my mom, and everything else! We have already been enjoying life up in the Valley of the Sun SO much and Gracie has transitioned beautifully. Honestly, she makes it all look so easy ;) And now I need a nap.... Well, things have been pretty even keeled around here as far as Gracie's trach goes: no infections, the stoma (hole in her neck) looks good, Gracie is so good about lying still for "trach care" (cleaning), capping is going pretty well (although we have to keep her distracted while she wears it or she fiddles with it or pulls it off)..... but overall, pretty status quo. Until Wednesday night! Gracie was finishing her bottle as she relaxed in her lamb swing. We have a video monitor so we close the door, put on some soft music, and let her chill out before falling asleep. Well, she never, EVER pulls on her trach or intentionally pulls it out, but somehow that's exactly what she did! It got stuck- kind of wedged as her trach tie was holding it around her neck, so I ran in and had to cut it off. She was crying so I sat her up and talked to her calmly so she wouldn't choke or vomit. It's hard to breathe when there is a hole in your neck and you're crying , after all! But she was breathing on her own, which is so awesome. However, when I went to put the new size 3.5 Neo trach in, it wouldn't fit! This has been coming for a while as the stoma continues to heal, but I have never had to go to that next step of downsizing her trach. So I got the smaller trach in and she was fine, albeit a little irritated around the trach site. But holy cow- I had an adrenaline rush! Phew! It reminded me that that was the state we lived in for the better part of Gracie's first year of life. We always had to be "on" in case there was an emergency situation, and you always have to have the next three steps planned out in your head. All I can say is, that training kicks right back in! I called our ENT but he isn't concerned about using the smaller trach as her scope is so soon anyway. Maybe Gracie is trying to tell us that she is ready to get it out? After all, she is the one who pulled out her feeding tube for the final time! I am crossing my fingers for her!!
![]() This is a shot of Gracie wearing the cap on her trach. We had to take a little break from capping as Gracie got a sniffle- boo! We think it either came from the play area at the mall where a curious little girl touched Gracie's trach (ahg!) or from the children's museum where G stuck one of the toys in her mouth....I mean, it could be anything really. But despite our hand wipes and sanitizer, this will happen form time to time. So I wanted to write about it because I want people to understand why parents with kids who have extra needs are so paranoid about germs. We are not, in fact, germaphobes ;) Well, maybe a little, but we have good reason! Most kids who get a cold have their noses wiped, maybe take some tylenol and possibly see their pediatrician (I think....). For us it's a little....more. So first off, we couldn't cap her for a good week due to extra secretions. Not to be gross, but imagine her trach is a volcano....yeah. In the middle of the night I was having to run into her room to suction out her airway because she was choking. Then her secrections turned yellow which means we have to start breathing treatments with a nebulizer and Xopenex. This called for a trip to her pulmunologist who also put her on a steroid to inhale severl times a day. Have you ever had to have a 17 month old sit still for 3-5 breathing treatments a day? Oy! It's like a rodeo! This all lasted for about a week but fortuantely we have one strong, healthy girl so it cleared up without needing an atibiotic. But we had to be very diligent about everything because this could have easily turned into a respiratory infection. I think tracheostomy.com says it best: "Children with tracheostomies are at high risk for respiratory infections. The trach tube bypasses the natural defenses (nasal hair and mucus membranes) of the upper airway that filter out dust and bacteria. Also, monitor for local infections at the stoma site. Hand washing before any trach care is one of the best defenses against infection" But everything worked out just fine and Gracie is over it, but this is just a good example of why we have been, and continue to be, as careful as we can without completely becoming shut-ins! I recently ran into a mom in Target who saw Gracie's trach and stopped us. Her daughter has a shunt in her brain to drain fluid and is 19 months old and just started scooting. No crawling, nothing. So we start talking and sharing stories because it is just so liberating to find another parent who has a DDD support coodinator, medical supply company and the same OT as us! She asked me if Gracie has been healthy and when we dared to venture out. She said that she didn't leave the house for three months after they got home from their PICU stay. I was like, "me neither!!". I mean, who else can relate to that? This must sound weird, but we were so excited to talk about all this! But for all we have been through, it is nothing, and I mean nothing, compared to what her daughter is facing.. I asked this mom if they ever played anywhere....like, maybe we could meet at a park? And she was like, "we don't go out." The end. Not sometimes, no playground, no library, no friends..... That really hit me because we have moved passed that phase. I just count our blessings every day and send love and compassion to all of the MANY families who are facing these challenges. And we are SO GRATEFUL for our AMAZING circle of friends and family who continue to support us. It means more than you will ever know. ![]() So this is the miraculous little cap that fits right over Gracie's trach. It's really just a plastic cap! I swear I have one of these on the bottom of the leg of my ironing board- it's honestly the same idea! ![]() It totally blocks all airflow through her trach and allows her to practice breathing through her mouth and nose. We have already had it on her for a couple of hours at a time and she is doing amazingly well! She doesn't mind it at all- in fact, she loves to wear it because she can be LOUD!! We are to work up to having her wear it all day, every day so that her lungs and airway can get strong and comfortable with use. We take it off at night so that she can sleep without any chance of obstruction (and we can sleep too!). ![]() On October 4th our ENT will do another airway scope (bronchoscopy) to see how things look. He will look for any signs of trachealmalacia, scar tissue, and most importantly, upper airway obstruction. If things look open and clear, then he will schedule a sleep study in which Gracie will be closely monitored over night with her trach cap on. If that goes well, she can get her trach out before winter time hits. If she still needs more time, we will try again in the spring. Fingers crossed! |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
March 2014
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