Updates! Updates!

On Wednesday Lexi had her 3rd esophageal dilation. It was scheduled for 2pm, which I hate because that means she goes all day long without eating. On top of that, the procedure was after her nap time (1pm) so not only was she starving, but exhausted as well. Regardless of that, she did so well. The only really hard part is that they admitted us to the exact same room she's had 3 times and she immediately cried when we walked into it. They have a little play room down the hall which saves us every time and we spent the majority of our time in there while waiting for the procedure which started 30 minutes late.

Since this was our 3rd time I've learned small tricks that have helped maintain a certain level of comfort for Lexi. We brought the portable dvd player with several Elmo dvds (Elmo is the man...I can't imagine life without him). We waited until right before the procedure to change her into the gown. We had them put the hospital bracelet on her foot (she HATES having stuff on her arms). They did vital signs while she watched Elmo. I requested they put the IV in her foot instead of her hand so when she woke up she wouldn't freak out every time she looked at her arm or tried to rub her eyes. And paci, paci and more paci. We've weaned her from sleeping with it and I have no problem using it for soothing with all these medical procedures until we are done with them. I like to joke that I am addicted to HER paci because I use it when I need a fast way to calm her down.

The procedure went quickly and we were called back to recovery about 40 minutes later when she was waking up from the anesthesia. To my delight they had listened to me and inserted the IV into her foot. Let me tell you, this made ALL the difference. Because she didn't see anything on her hands or arms she was able to comfortably snuggle up against me and sleep off some of the anesthesia for about 30 minutes. Usually all the gauze, IV and hospital bracelet make it too uncomfortable to rest her head on and she just freaks out every single time she looks at her arm. Every. Single. Time. We didn't even need to use the dancing monkey they have at the hospital that usually distracts her from looking at her arm. I know how pathetic this sounds and I really wish I had a video that captured the drama that ensued each time she caught a glimpse of her wrist. Tragedy.

Her oxygen sats were a little low because she was sleeping and they didn't want to release us until she could maintain a 93% for 15 minutes. She was hovering in the high 80's for awhile. Once she woke up her sats went up and we were able to good home. But the best news is that this was most likely the last dilation. They were able to dilate to 15mm. Although that is still below normal, it's probably enough for her to eat normal food. We will re-evaluate if she is still having issues after her tonsillectomy.

Speaking of tonsillectomies, we decided to see the ENT that placed her ear tubes because he performs partial tonsillectomies that have a quicker recovery, and less pain, but are still just as effective if the reason for removal is simply size related. Needless to say that sounded awesome to us and we've changed our plans and are going with him. The procedure will most likely take place at the end of this month, or early next month. Most kids her age recover in about 3 days. 3 DAYS! While another less than 10% of kids take about a week. Just compare that to the recovery of a full tonsillectomy that can take up to 4 weeks to recover from. The risk of bleeding is also 4x less in a partial. Jackpot!

Now, onto more fun subjects... like my birthday. I am turning 30 on Monday. I'm feeling super spoiled because my parents will be out here for my birthday. They live several states away so I haven't shared my birthday with them for 6 years. Then the following week the hubs is taking me to an all inclusive couples resort in Cancun. Both grandparents with be watching Lexi so she's going to have a blast and we'll get to rest easy knowing she's having a blast. She probably won't even realize we're gone.

So those are some significant updates. I will post more once we're back from our trip and once The Chubs goes through her final procedure. Then we can hit feeding therapy hard and maybe, just maybe, I can finally think about ordering something for her off of the kids menu. Sounds like heaven to me.

The scoop on the scope

Well only 3 months have passed by since I last blogged. Um... yeah. I don't even know why I feel like blogging is such a chore. Well, maybe I do. And you might be able to relate to my lack of time or energy once I explain it all. I'll also insert a few random pictures of Lexi to make things more interesting.

Lexi dropped off of the 3rd percentile again back in September. It was pretty upsetting considering all the work we'd done to get her there. The GI decided to order another scope. She had one done around 9 months old and nothing was found at the time (under our previous GI, whom I hated), so he felt like something was being missed. He was oh so right. I'm thankful he pushed for this because if this scope had not happened we would still be in the dark.



Lexi was scoped in mid-October. She suffered a mild complication because the scope that should've fit down her esophagus was too big and caused trauma and bleeding. This was scary but even more, it was critical because this is how they realized she has an esophageal stricture.


I had no idea what this meant at the time. I had heard the word thrown around but wasn't totally sure what it meant. Basically, it means that there is a narrowing of her esophagus around her esophageal sphincter. Normally a child her age has an opening of about 18mm. Lexi's was 5mm. That was kind of an "aha" moment for us. No wonder she physically can't eat more than a puree consistency. IT DOESN'T FIT. 2 years of vomiting and gagging and weight loss and the pieces are starting to fall into place.
The first step was to find out what was causing the stricture. It could be congenital or it could've been formed due to scar tissue from reflux. The GI said it didn't look like there was scar tissue around the stricture so he is leaning more toward congenital. About 10% of congenital strictures will have some sort of cartilage around it causing the narrowing so Lexi needed to have an MRI to rule that out. If she had cartilage surrounding the stricture she would need to have surgery.

I was freaked out at this possibility. It would've taken weeks to recover and she would probably need to be fed via tube for a while. This sounded like a huge step backward considering how far we worked to avoid that. I know it would simply be for healing purposes but since she's been orally defensive in the past, it could be a huge set back.

Thankfully the MRI showed everything was clear and we could proceed with a much less invasive procedure called an esophageal dilatation. It's where the insert a small balloon into the esophagus to stretch it. Lexi has had 2 of these so far. Every time he esophagus stretches though, it always goes back a little. For instance the first time it was stretched they got it to 10mm. By the time we went back for the 2nd procedure it had gone back to 8.5mm. This last time they got it to 12mm, which means it will probably be between 10 and 11 next time we go in. Her 3rd dilatation is Wednesday the 7th. We anticipate she'll need at least one more after that.

Another thing they found is that her tonsils are enormous. On a rating scale of 1-4 (4 being the largest) hers are about a 4. They are practically touching. And what are the issues related to large tonsils? Oh... failure to thrive, poor weight gain, gagging, puking etc. Bingo! Another piece of the puzzle slides into place. Not only is my poor girl gagging in the back of her mouth from her giant size tonsils but she is also gagging from the food build up in her throat due to her stricture. I wouldn't want to eat either if I had her problems.

This month is a medically busy one. We have the remainder of her dilatations, and a tonsillectomy to look forward to. Every time her esophagus is dilated she is really pukey and gagging for about a week as she adjusts to the new sensation in her throat and learns how to swallow again. And the recovery for the tonsillectomy is going to be incredibly painful for everyone. I plan on keeping her in the hospital as long as they'll let me. I have a feeling that getting fluids and calories in her, let alone the pain meds will be quite the challenge. But when this is over? Should be a home run. At least that's what I've been told. We'll have to get to the other side to see if this IS in fact a home run. I'm hopeful but cautiously skeptical at the same time. For now, feeding therapy is on hold. There is no point trying to get her to eat a hot dog right now when her esophagus is barely the size of a pea. And tonsils that touch? I can only imagine how comfortable THAT must be.

So there ya go. Lots of stuff going on. In addition I had strep while Lexi had bronchitis. Then we all got the stomach flu the week of Thanksgiving. We're definitely hoping for a brighter new year. We're thankful for all the answers we've gotten and that we're on the path to recovery. We couldn't have gotten this far without our dedicated doctors and lots of prayer! Thank you all.

SMILE

Lexi has developed a signature camera smile. Without fail, when we ask her to smile for a photo, this is what we get:





She'll need to work on this a little if she decides to become Miss America, but otherwise we love it just the way it is!

Begging for bed

Last night we ran some errands and ended up having dinner at a delicious Asian restaurant that happens to be one of our favorites. I knew this meant we would probably get The Chubs into bed late. Usually she does ok if it's just a little later than her usual 7:30 bed time. Last night we didn't get home until after 7:30 and by the time we'd completed the bulk of her bed time routine, it was nearly 8:15. Stephen took over like he usually does and read to her, rocked her and sang to her ( I love hearing it over the monitor, so sweet). But tonight Lexi did not sign "book" over and over again, she had something else on her mind.

Apparently while this whole routine was going on, Lexi pushed up on Stephen's chest, signed "night, night" and whined and reached for her crib basically to say "Well, it's been fun, but PUT ME TO BED ALREADY!"

She also apparently smiled as soon as he laid her in the crib and within a few minutes was completely out.

The Outside Bug (and other updates)

Oh dear, well I'm not even going to apologize for not blogging for so long because seriously, I would be apologizing every post from now until eternity since I don't know how much I'm going to be able to post this summer.

How are we? We're doing just fine. I guess this is why I haven't blogged a ton because although things move along and change, there really isn't anything super exciting going on. We've been enjoying our summer, playing in the water, taking walks to the park, watching airplanes, skinning knees, playing with new friends, getting into average toddler mischief and getting scarily close to the terrible 2's with every waking moment.

I guess here are a few things worth mentioning:

• 3 weeks after Lexi's tube surgery one of her tubes got clogged and she got ANOTHER ear infection. Instead of taking oral antibiotics we can now administer ear drops instead. Sounds simple right? Well, not really since Lexi screams bloody murder everytime we hold her down and ATTEMPT to get the drops in. Emphasis on the attempt because I'm not positive that I've ever gotten them far enough in her ear amidst the thrashing side to side and batting my hands away violently. We'll find out tomorrow at her follow up.
• Lexi cut two canines and is working on her third plus a molar. Life has been interesting. My long, hard teether does not do well cutting teeth. There are moments of pure bliss when she's happy, sweet and cuddly, but there are also many many looming terrible 2 tantrums that I know are related to the pain she's experiencing.
• Speech therapy and tubes have helped immensely. Since her tubes Lexi has been so much more vocal and now makes animal noises and is trying to finally say more words, or at least attempt it. Today she was saying "Apple" and has been starting to try to say "Dog" and a few other words. I'm sure the fact that she can finally hear much better makes a big difference, and her speech therapist is pretty stinkin awesome too.
• As if our feeding issues weren't challenging already, lately Lexi loves to throw anything and everything off her highchair tray. She's been doing this for awhile but not to this degree. EVERYTHING goes onto the floor. Now to paint a picture, she is still eating mostly purees with oil. Take about 4 oz of something like sweet potatoes, add 1 tablespoon of oil and then hurl it across your wall. Then take some blueberry puree with the same amount of oil and splatter it over the floor and now you have somewhat of a picture of what our kitchen looks like after almost every meal.
  
• Lexi's obsessed with going outside. So much so that if she can't go outside "RIGHT NOW" even if there's a thunderstorm or it's 100 degrees, she throws a fit. Yesterday we ended up feeding her on the deck in the shade when it was about 97 degrees outside simply because she would not eat unless she could go outside. I wish I could show how vigorously she signs "outside" and then the whine that accompanies it every time she has the urge.

And that's about all. We leave for a 10 day trip to the Northwest for my cousin's wedding in early August. We're looking forward to seeing family and getting away. We have a 3 night stay on the Oregon coast that we're really excited about. We also get to head back up to the Seattle area where I grew up near the end of the trip to stay with my parents and see some old friends. Should be a fun time! Hope everyone is having a wonderful summer!

Jazzercising

I have admittedly been a very bad blogger lately. I'm forcing myself to write because this blog serves more than the purpose of keeping family and friends up to date on Lexi, but it also is the equivalent to the calendar my mom used to jot things down on whenever we did something new. I've never been good with planners or calendars and have found this blog to be a great way to log everyday life with The Chubs. The problem is that when I go for a whole month without writing anything I start getting stressed that I've missed writing down a lot of important information. And as kids get older they become more independent but at the same time they are more work (in some ways) and I've found myself preoccupied with her most of the time with very little free time to sit down and blog. The days where she was taking 3-4 naps a day are long gone and sometimes her 1 nap is much shorter than I would like it to be.

So, enough explaining myself, I should probably get to the part where I catch up on all I've missed writing.

Here are some updates:

• I'm not sure if I already wrote something about this, but Lexi has had a chronic double ear infection since at least March, but probably more like February or January because I was a typical FTM that didn't know her cues. She's had trapped fluid in her ear this entire time that won't drain on it's own even after several courses of antibiotics and it's effecting her hearing quite a bit which explains a lot of the speech delay going on. She's doing awesome with her sign language so we know that cognitively she is right on track if not advanced. The ENT guesses she has about 30-40% hearing loss due to the fluid. Because of this she is having tubes placed tomorrow. We're hoping that will help a lot.
• She is now seeing a speech therapist who also is strongly thinking once her tubes are in that we'll see a huge change there. Especially since she was beginning to form words before all of this happened.
  
• She is an excellent walker. She's been doing really well for awhile now. I no longer have to watch her at all. She can cruise around the house without me worrying about her taking a header into something. It's really given me a lot more freedom and she's so much happier now. She's starting to do better at following me in public places and listening to instruction but she does get pretty distracted by her surroundings!
  
• Lexi is so much more affectionate now than she's ever been. She loves to give me kisses and hugs. My non-cuddler is now all about it. She even lets me rock her in the rocking chair before I put her down. Something she used to never let me do. I feel like her sensory issues are improving a lot.
  
• She is now an avid jazzerciser. The video below says it all. We went to breakfast on Sunday morning and she walked down the sidewalk past a Jazzercising class where she decided she'd like to join in. Sound is a must on this one. And yes, she is very much ...white.

1.5

Is it really possible that my baby is already a year and a half old? I'm having a hard time accepting this, but at the same time I have to admit that this age is the most fun yet and it seems that with every day that passes I am enjoying The Chubs more and more (and I really didn't think that was possible!).

Lexi is starting to catch up fast. For 9 months she literally did nothing but sit with her hands in front not touching anything. She didn't even have protective reflexes because her spd was so bad (she didn't want her hands to touch the floor, or anything for that matter). Now that she has been in therapy I have really seen her flourish. She had a lot of skills to catch up on that she lost time with those first 9 months, but as each month passes she's started to finally possess the traits of a normal, healthy and developing 18 month old. To say I am proud of her is an understatement.

I don't think I've mentioned this yet but about a week or two after she started walking she started to crawl. I worked with her everyday for 8 months on this skill so I am so thrilled. Now she can crawl to an object, pull up and walk wherever she wants. This is a normal skill for most kids but for her to feel comfortable on her hands and knees crawling around is a huge deal for us. I really didn't know if she would ever crawl.

She isn't a huge talker (although her favorite words are "Duck", "Baby" and "Mama" and she loves making the "hoo hoo" noise for the owl in her room), she is big on signing and can put 3 signs together to make a sentence. I counted her sign repertoire and it is over 90 and counting. It has been a lifesaver since her verbal is lagging. A speech therapist is going to be working with her soon and I know this will help her take her signing ability and translate it to verbal communication, but for now I'm just thrilled to be able to communicate with her. I'm sure it has eliminated a lot of tantrums and for that I'm grateful.

Her observation skills are astounding to me. She will pick something out in a crowd and sign it before I have even seen it. Sometimes I have to look closely to see what she's referring to but I always end up finding it. The Hubs took her past the frozen food section the other day and she signed "fish". She must have seen a fish picture (or maybe even the word) on the packaging. Today I was wearing an American Eagle fleece with that tiny little embroidered eagle on the top left (which to me doesn't even really look like one) and she pointed and signed "bird". The hubs ran a marathon this weekend and she kept signing "dog". I couldn't see one anywhere until finally off in the distance I saw an owner with their dog. I would've never spotted it on my own. She loves signing and pointing to anything in a book that she recognizes.

My favorite thing is her dancing. She'll ask for "more music please" and then when I turn it on she dances around the room bopping and swaying to it. As soon as the song stops she asks for it again. This can drag on forever but it's so stinking cute that I can't help but keep playing more songs for her.

She is a hair terror. She likes to pull hair and it's not a good habit to develop especially since she will go for anyone and everyone's hair and yank super hard, giggling the whole time. On a playdate a few weeks ago she just kept walking around pulling all the kids hair. I had "that child". I recently purchased a doll with long brown hair for her so that we can practice being gentle. So far she just wants to pick up the doll by her hair and fling her across the room. I think we need to work a little harder in this area.

Lexi is so much more of a snuggler now than she was as a baby. Therapy has really helped in this area. Now she'll walk over to me and give me hugs and kisses. It melts my heart. I still remember when she would fuss or cry when I tried to hold her or rock her. She has come so far since then and actually craves the physical touch now. I finally get to cuddle my little girl and it's wonderful!

No matter how much I try to describe my little girl, it can't even begin to capture the little person she is. I love her more than life and I am so proud to be her mama.

Happy 1.5 years Bug!