Friday, July 29, 2016

Tonsillectomy and Adenoidectomy on 3 Year Old

So Bailey had her tonsils and adenoids removed a few weeks ago. Obviously tonsils is a fairly common surgery for kids - but having them out at such a young age was a bit scary but overall everything went really well and the recovery was better than I thought it would be (that being said, I never want to do that again!)

Pre-surgery tonsil pic (NOT inflamed, just an average day. This is how big her tonsils were every.single.day)
Enlarged toddler tonsils.


Backing up to the beginning, I took Bailey to the ENT a few months ago because of her speech delay. I was wondering if there was fluid trapped in her ears. She had a ton of ear infections when she was between 1 and 2, but none between 2 and 3. Honestly, she probably should have had tubes in. She had five in a row over three months. But anyway. I also wanted to ask the ENT about her snoring because Bailey snores like a grown man (or did, not now!) and wakes up pretty frequently at night still. Would you like to hear how bad her snoring was? I made a recording for the ENT (and he diagnosed her with sleep apnea based on the video):

https://www.youtube.com/watch?v=U4LLmiWoRX4


Anyway, the ENT resident came in and I told him my concerns. He asked Bailey to open her mouth and say "ah". Without hesitation he said "those need to come out." Then he disappeared to get the attendee doctor who would do the surgery. He looked at her tonsils and said they same thing. He said she had giant preemie tonsils. Is that a thing? Apparently yes.

They wanted to schedule the surgery ASAP but between my brother's wedding and a few other things it wasn't going to happen. So we put it off until July.

In typical fashion, I bought several books on Amazon to try and help her understand the surgery, as well as OR scrubs for her doll and this very cute animal hospital set. Judge me ha. My baby has surgery, she can get some extra toys. Per the advice of the "your child is going to have surgery" booklet the Cleveland Clinic gave us, I told Bailey about the surgery a few days before. I explained to Brooklyn and Bailey that Bailey was going to go to the hospital and have surgery to make her feel better. She would be sick for a little bit, but then she would feel much better. Before I can say all that - all I have said is that Bailey is going to the hospital to have surgery - Brooklyn yells "no, me!" To which Bailey responds, "no, me!" and so on. Morgan continued to eat her dinner, uninterested.

The morning of, we woke Bailey up a little early. My parents came over to take the other girls to daycare. We got to the main campus of Cleveland Clinic around 7:15 am. Bailey was very happy thinking she was having a fun adventure with mom and dad. We did all the paperwork and checked in. They took us back to a pre-surgery room and Bailey was starting to get a bit iffy and suspicious. A child advocate person came in and was WONDERFUL. She had bubbles so was instantly Bailey's new best friend. She also had the mask they would use to put Bailey under and was showing her how it worked. She let Bailey pick out flavored chapstick (she picked the Belle kind of course) so the mask would not smell like plastic. I somehow coaxed her into the hospital gown (though she refused to take her shoes off) and put my own scrubs on. Then the doctors, aides, nurses, anesthesiologist all came into the room to take her down to surgery. This is about the point where Bailey was like oh hell no and started to get really panicky. I carried her down to the operating room, her unease growing. I sat in the chair with her as they put the mask over her face. This was the worst 60 seconds. I was crying. Bailey was fighting the mask and screaming. The nurse told me to sing to her to calm her down. I could barely choke out a sound. "What is her favorite song?" they asked. "Hush little baby," I managed to say. And the nurses sang to her while the mask did it's work and she was out.




The surgery itself went pretty fast - maybe 45 minutes or so? We went into the recovery room and she was still out. She slowly started stirring after 30 minutes maybe. Right when kids come out of anesthesia they are confused, disorientated and a little hostile. She was not a happy girl. I laid in the bed with her. She actually chugged four mini apple juice containers within that first hour which is really awesome. She refused Popsicles. I learned that Bailey does not like Popsicles, despite my careful stocking of our freezer ahead of time.




Bailey did awesome that first day. She wanted lots and lots of ice cream. She even ate macaroni and cheese for lunch. Darren left to pick up Brooklyn and Morgan and I stayed overnight with Bailey. The children's unit was really nice. They have tons of toys and DVDs you can use, as well as books that you keep (they can't be cleaned). But Bailey was obsessed with the salt water fish tank that had Dory and Nemo fish in it. We spent a lot of time sitting looking at fish. I am also thought it would be hard for Brooklyn and Bailey to be away from each other overnight. Figure they have never slept more than maybe ten feet apart from each other. Darren kept Brooklyn up a little later so she went down pretty easy. Bailey had a bit of a harder time falling asleep. We snuggled in the hospital bed and watched a princess DVD until around ten. She did good all night but woke up right around medicine time crying.


My main tip for anyone with a kid recovering from T&A surgery is to stay on top of the meds. Every three hours means every three hours. Do this until about day 11 or 12 post surgery. Set your alarm at night. Alternate Tylonel and Motrin.

The third day seemed harder than the first two. She wouldn't really eat or drink anything. And I mean anything. No more ice cream. No juice. Clearly no Popsicles. No Jell-o. No pudding. No mac and cheese. No water. I finally got her to drink a little milk. She really didn't eat or drink much for a few days. She seemed to perk up around days 5-6 and then crashed some when the scabs fell off around days. She would be fine 80 percent of the time (like super happy and playing) but then very upset and throwing tantrums for the other 20 percent (like kicking and just screaming, which she NEVER does, but was obviously in pain). Brooklyn was very sweet to her!



So she's fully recovered now. I was hoping for a miraculous improvement in speech but she seems about the same. We had her first speech therapy session post surgery and are shifting the focus from getting her to say anything (now that she has a good vocab and uses sentences) to focusing on her articulation. I still think she has apraxia of speech but for now the SLP wants to focus on her articulation before we label it as anything. Right now we are focusing on the P sound. Bailey can't say P's at the beginning of words (though she can say the P in up for example). She is unable to close her mouth to form the P used at the beginning of the word. So instead of pie she just says "eye." or "ur-el" instead of purple.

https://www.youtube.com/watch?v=tADhfXZlYTE



Typically the P is mastered at age 2. She does have the M down though! I don't want to diminish her progress. For a kid that said almost nothing in March to the progress she's made now is tremendous. I just feel awful as she's communicating now that it's so difficult to understand her. There is nothing worse than your 3 year old repeating the same sentence over and over again and you just can't understand her. We try very hard to never say, "I can't understand you," and figure out with context clues what she wants, or ask her to show us. But it breaks my heart when she starts crying and getting upset because we can't understand her. (As a side note, Brooklyn is doing awesome too with her speech. She is much more clear and easy to understand, but still a bit behind her peers in how she uses her language.) Anyway, we only worked on M and P at this last session, but here's when kids typically master specific letter sounds:

 



Friday, July 22, 2016

Monday, July 11, 2016

Whose birthday is it?

Me! 
No, me!
No, me!
#twinlife

3 year check up

Brooklyn 27 lbs
36.3 inches
Bailey 27.5 lbs
34.6 inches 

10-20th percentile. Little squirts 😜

Note that one of the measurements had to be wrong as they are the same height, ha. 

Adventures with 3 under 3

Well we no longer have three under three (now we have three under four). In memory of those crazy days: https://youtu.be/2brnpEvGMG0 

Happy third birthday to Brooklyn!

Happy third birthday to the wild child Brooklyn, our "baby b." Your never ending energy always brings a smile to our face through your frequent requests to "get me" (aka chase me) or "dance with me." I love watching you interact with your sisters and hearing "I come baby!" as you thunder up the stairs to rescue Morgan when she wakes up from a nap, or "Bail, cookie for you!" when you faithfully deliver Bailey her promised cookie. Your current obsessions include sleeping beauty ("sleeping beauty first!"), Princess Sophia, taking various small objects like plastic forks, eggs and frying pans to bed or trying to sneak them into daycare, drawing unique pictures with little objects (birds? Letters?) scattered throughout, running everywhere - sometimes tripping -and getting back up without missing a beat while earning an impressive amount of bruises all over your body (and a rock in your lip), pretend and real cooking/baking, swings and the park, 5 Little Ducks song and too many others to list. Here's to another exciting year of adventures! 

Happy third birthday Bailey!

Happy third birthday to our giggly girl Bailey, our "baby a." You have such a vivid imagination and I love watching your elaborate play, whether it's the alligator or giraffe chasing someone or the mommy pony rescuing the baby pony after falling off the train. You are always so interested in new things ("what's dat mom?!? What's dat mom!?!) and notice the smallest details like the page numbers in the book. Your current obsessions include Belle, figurines, playing hide and go seek but getting so excited that you pop out of your hiding place before being found laughing like crazy, the cat ("hi meow! No meow!"), riding on dad's shoulders, the pirate episode of bubble guppies(arrr!), helping mom in the kitchen, launching yourself off the picnic table whether someone is ready to catch you or not, whales and baby beluga song, slides, etc etc etc. I love watching the incredible bond between you and Brooklyn (um the sunflower patch hand holding, can it get any cuter?) and melt when you bring Morgan toys or snuggle with her. Never lose your sunny personality! 

Dress up closet

Completed a Pinterest inspired project for B&B for their bdays! Repainted an old cabinet pink and took the doors/shelves off. Darren put in a curtain rod and I hung some dress up clothes in it. They flipped, obviously! 

Thursday, June 9, 2016

Twin toddlers OT and speech IEP

Well we've been headed down this road for a while. The Help Me Grow program ends at age 3 and the IEP program takes over. IEP means "Individualized Education Program" which is basically a formal process for the school to evaluate and treat kids with any kind of special needs. This can range from very severe to very minor issues.

We took Brooklyn and Bailey in for an evaluation in May. My concern was that Bailey would qualify and Brooklyn would not. Obviously, I would prefer neither kid is on an IEP, but if only Bailey was, I was really nervous about Brooklyn being left behind at daycare and Bailey attending preschool for two hours by herself. The preschool program has "typical peers" (aka kids without any issues) and then kids with special needs, but the typical peers are chosen in December for the following year and we did not even think to have the kids entered into that. My plan was to just keep them in daycare till kindergarten and skip preschool altogether. Things change though!

Anyway so the evaluation. I thought there was no way the girls would split up from Darren and I as they are very shy and really don't like strangers. But the preschool teacher won them over instantly with promises of toys and the girls followed him into the room without a second glance back. We sat outside the classroom on tiny preschool chairs and filled out endless paperwork. Times two.

After the evaluation, we met briefly with the school psychologist and school speech and language pathologist (SLP). They said they had some concerns and would like to set up the formal meeting to go over the ETR (evaluation team report) and discuss if an IEP is needed.

Fast forward two weeks.

So both kids quality for an IEP for both speech and OT for fine motor skills. Did we know or have any concerns about their fine motor skills? Nope, that totally flew under the radar for me. Now that it's been brought up though, I can see their point.

For Bailey, they have concerns about her motor skills to produce sounds and that she is basically unintelligible. She'll be getting one on one speech for a half hour each week. Her fine motor skills were slightly delayed she she'll be getting extra help in a group setting each week. As the school's SLP was discussing her speech delays, I asked him if he thought she had apraxia of speech. This has been a concern of mine for a while. Here is the clinical definition:

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. - http://www.asha.org/public/speech/disorders/ChildhoodApraxia/

The SLP said he's not ready to diagnose her with this, but it is something he's considering. I discussed it with the speech therapist Bailey sees at the Cleveland Clinic but she seemed to brush it off. Will bring it up again. I go back and forth with it. I think it fits with Bailey's issues pretty well but some of the symptoms - being clumsy and having trouble eating/not like things in your mouth like a tooth brush - don't fit at all. On the flipside, it also calls out issues with fine motor development and she (apparently) does have this. Time will tell. I feel like she is making so much progress but I am noticing people besides Darren, me and our daycare provider have difficulty understanding her. She is the HAPPIEST kid in the world and it breaks my heart that she has such a hard time communicating.

As for Brooklyn, on paper she doesn't have a speech problem. We took her into Cleveland Clinic and she passed. They did not think she needed speech therapy. It's been hard for me to explain the issue with Brooklyn because she CAN talk, she just doesn't. So it was a huge relief when on her IEP that they were able to understand the issue. In their words - she isn't using her speech very functionally. Yes, that is the phrase I needed to explain it! During the one on one evaluation she was able to use words and sentences, etc but in a group setting she clammed up and wouldn't speak, or would barely utter a whisper. She wouldn't ask for things and wouldn't answer anyone. So her treatment will be in a group setting and have more of a social focus. She also scored extremely poor on the fine motor skills (again, I had no idea) so she'll be getting one on one help with this.

The team also had a lot of social concerns about the girls. This did not surprise us. They play so well with each other and us but really don't like people. If another kid comes on the playground they will often freeze. So that's another thing the school will work on with them both.

The other bomb that got dropped during the meeting was the plan to put the girls in separate classes. My mama bear instincts were going full force like absolutely not! They countered with the they are their own person argument. (Trust me, I am well aware of this.) Totally on board with separating them for Kindergarten and beyond. My concerns are that at age 3 that seems soooo young when they are already so shy and don't seem to like other people. They IEP team, however, said that twins with social/speech issues really do so much better being separated so I agreed to it. This makes me a little nervous, but I am hoping each girl will do great and progress quicker. Plus it's only two hours a day.

What's slightly awkward is that the preschool is two hours a day. The kids with special needs are eligible for busing but only within our city. Our daycare is in the neighboring city by seven blocks. No exceptions though. We are lucky that Darren works from home and while not an ideal plan, he can drive them back to daycare after the bus drops them off. I think it's important enough for them to get help.

It was a lot of information crammed into a two hour session. I am really glad the girls will be getting services but also feeling like shitty mom because they are so behind in speech and fine motor. All those guilty mom thoughts rise up like if I wasn't working and was home with them all day or if we read more books or I should have had more fine motor activities and toys for them. And then I think about how ridiculous this all is. It's not like my mom or grandma had 18 fine motor activities from Pinterest laid out each morning. Also, Morgan is doing awesome. She already says: kitty, cheese, down, mom, dad, no, uh oh, oh dear, hi, bye, i love you, and a few more keep coming every couple days. And she's 13 months. Which is crazy early. She has said some sentences too like "hi dad" and "bye dear." So perhaps it's not "shitty mom" and B&B really just have some issues. I'm sure being preemie has contributed some to this, which also packs on the mom guilt. If only I could have stayed pregnant for a couple more weeks, would they have these issues? I don't know. It's not helpful to think that way, but sometimes it can't be helped.

In other news, Bailey is also getting her tonsils and adenoids out so perhaps that will help some with the speech (they were very, very enlarged. She snores like a grown man and has sleep apnea).



Friday, May 20, 2016

Rock stuck in lip...

So this happened.

We were on walk in the valley and Brooklyn tripped, and face planted. She was crying and had a bloody lip. I took her into the bathroom ad cleaned her up. There was a weird mark on her lip but I couldn't really tell what it was - blood blister? scab? cut? Darren took one look at her and says, "That's a rock." I was a little skeptical. We couldn't wipe it away, and it did feel a little hard, but what was it? (See top left pic)

Anyway, we took the kids for ice cream and she perked up and seemed okay. Put her to bed. She woke up at 10 pm just crying soooo hard and her lip was super swollen. (see top right pic). I was FaceTime calling my parents and my sister to try and figure out if there was something in there. Finally just took her to the ER.

The ER doctor had to give her some baby valium to sedate her some. Then two doctors and a nurse came in to hold her down (mama was crying too) and the one doctor used tweezers and pulled a little pebble out of her lip! It got wedged under the skin.

As soon as it came out (bottom left pic) the swelling went down and she was much happier. Took her home (not stitches!) and put her to bed. She was a little high from the hospital drugs and spent about thirty minutes talking nonsense in her bed which was hysterical. Anyway, she was fine the next day (bottom right).