Memorial Day weekend update...

We have had a DELIGHTFUL weekend!

On Friday, my parents hosted a sleepover for my kiddos and their cousins. Josh and I took the opportunity to have an impromptu date night. It was nothing fancy, just dinner at Fuddruckers (I love their cheese sauce an unholy amount) and then we went to see MacGruber. It was a fun evening.

On Saturday, KayTar spent most of the day in the pool with her cousins, but BubTar came home early in the day and wanted to invite his friend C over. C spent most of the day with us and we all went swimming at my parents' house in the evening.

This morning, Josh made cinnamon rolls and shortly after breakfast we headed back to my parents' house for more swimming. We were in the pool nearly all day, with a short break for a lunch of chicken kabobs and chicken nuggets. It was so much fun. This evening we had our best friends over for pizza and game night (Mexican Train, WOOT!), and BubTar's friend is spending another night with us so his parents can go celebrate their anniversary. He's such a good kid, we definitely don't mind keeping him for another evening. Having an extra kid around is almost easier, they are all much happier and nobody ever complains of boredom!

Tomorrow we have more swimming and grilling plans, and I cannot imagine a more relaxing and fun weekend! It is finally starting to feel like summer, even though the kids have three days left in their school year.

Disclosure.

BubTar is my shy guy. He is such a smart kid, but he doesn't fit in easily at school. He makes straight A's (and many of the kids in his class are in second grade for the second time), he always has his nose in a book (he is the only kid in his class reading chapter books...and his are on a 5th grade level on average), and our family is quite strict compared to the other children in his class (he watches Disney and Nick while his peers are talking about movies like Orphan and TV shows like Family Guy). He is awesome...funny, intelligent, and sensitive...but he feels like he's on the outside at school. He has one best friend from his previous school, they've been friends since Pre-K, but hasn't made any good friends at school this year. He is friends with the boys he is in scouts with, but hasn't made any close connections. Although he has had a good year, it has been a sore spot for him.

At the district Pinewood Derby meet, he met another wolf cub from a local pack, C. It was so easy and they were instant friends. Turns out, C lives on our very street! They are so similar, both shy, intelligent, funny, bibliophiles who read well above grade level. They play the same games, read the same books, have the same temperament. The second time they saw each other, C said, "BubTar, I'm so glad you are my friend. I don't have many." It was SUCH a BubTar thing to say. Not only are the boys VERY similar, C has a little sister, E, who is FIVE. E is outgoing, bubbly, hilarious, and JUST LIKE KAYTAR. The night before BubTar's birthday party we took the kids to movie night at C and E's church, and KayTar and E were instant friends. It was quite amazing...like someone took our kids, made a copy, tweaked one or two details, and TA DA! C and E were created. Every time we see them, we discover a new similarity. It was exactly what BubTar needed.

A couple of weekends ago, we invited C and E over for the evening. We had dinner and the kids played, the boys played Wii with Josh and the girls played dress up and threw a ball upstairs. The next day, BubTar and KayTar were invited to C and E's house. This is a huge deal, because KayTar has never, NEVER been anywhere without a family member or a trained medical professional (she goes to school and camp in the summer, but both those places have her medical history and are trained to handle her emergencies). To be honest, I didn't want to let her go. I was nervous, but she wanted to go so much and I couldn't tell her no. BubTar was going to be with her and he knows how to take care of her, so we decided she could go. We tube fed her, checked her glucose and ketones, gave her Albuterol, and dropped her off. The only instructions I gave were to make sure that IF she ate (and she probably wouldn't) the label needed to be checked to be sure that it did not contain tree nuts, and of course to call us if they needed anything. That was it. No mention of episodes. No mention of asthma or feeding disorders or tube feedings or unilateral hearing loss or light sensitivity or gross motor delays or sensory issues. I didn't give her whole history, all the worries, all the things that could possibly go wrong. I could have said all of that...maybe I should have...but I didn't. KayTar has really grown into her own this year and many days, MOST days, none of that is a major issue. I decided that for one day, for 3 hours, she could be a normal kid. KayTar knows her own limits, if she needs help doing something because of her motor delays, she will ask. If she doesn't want to eat something, she won't. If something triggers her sensory problems, she will withdraw from it. If she starts to feel sick, she will tell an adult. If she can't hear you, she will tell you to talk into the ear that works. If the sun hurts her eyes, she will ask to go inside. So I stepped back and let her take the lead. And it worked. She went, she played, she had a great time without a single issue.

It is difficult to know what to do in these situations, do you share too much and risk setting of alarm bells that don't need to ring? Do you stay quiet and not provide information that might be pertinent? Where is the line drawn? For us, in this situation, this worked. It was only a couple of hours. We were down the block and if anything out of the ordinary had occurred, we'd have been there in seconds. BubTar was there and he knows all about KayTar. She had been medicated and tube fed before going, the odds of anything happening were incredibly slim. I still worried, my baby was in a new environment without me, but I think we made the right call. As KayTar continues to grow, it will be a situation we find ourselves in more and more. How much do we share? When is appropriate to explain everything, when should we hold back? When do we let her take the lead, when do we step in? When is sharing everything a necessity and when is it a disservice to her? I don't know that we'll ever have the right answers to these questions, but I think it will be something we're having to ask ourselves more and more as KayTar enters her grade school years.

Whew, that is better!

Last week was terrible. The last time I can remember being that sick was probably when I was 16, ten years ago! Quick recap: I had a chest cold for a week, started to feel better Sunday morning before getting much worse on Sunday night. On Monday I saw the doctor, got a steroid shot, started antibiotics and mucinex dm along with my albuterol. Tuesday, I started to feel a tiny bit better. Wednesday, I got worse and the doctor started me on oral steroids. Thursday, I started to feel better. Friday, I got much worse...I had the scariest asthma attack in a very long time. I thought was going to end up in the hospital. Once I finally got it mostly under control, I called the PA because I was maxed out on albuterol and my chest was still as tight as a drum. She called out Symbicort for me and once I started that, I finally, FINALLY started to actually get better. I made steady improvement over the weekend and it is such a relief. The bad news is that KayTar seems to be coming down with it now. She has been congested and coughing since Saturday, so far nothing beyond some mild upper respiratory symptoms, but I'm still a little worried about her. If it hit me this hard, I'm a bit anxious about how it might affect her.

Here's a few snippets to catch you up on what we've been up to recently. I have two weeks left of my break between semesters, I'm taking Trig and Pre-Cal over the summer. Josh graduated from junior college the Friday before last...we're both transferring to university in the fall. We FINALLY have an endocrine appointment for KayTar coming up next Friday...we're currently testing her glucose prior to every meal/bolus feeding, even at school. She's such a champ...doesn't mind at all. Sometimes she pretends I'm a Medical Fairy and my wand (lancet) is filled with fairy dust in lieu of a needle. She's a hoot. BubTar got into the GT program for next year and he's quite excited about that. We've been having lots of fun playing old school Nintendo games together lately. The Wii was ABSOLUTELY the best family purchase we've made in a very long time. The kids have a week and a half of school left and I can hardly believe summer is right around the corner! That is all the news for now, and I just have one very, very important question for you all...

What did YOU think of the LOST finale???

In sickness...

Yesterday was our 9 year anniversary, we were definitely living out the IN SICKNESS part of our vows. After taking a sick day on Saturday, I felt a bit better on Sunday until evening hit and my asthma (which hasn't acted up in years) went berserk. I went to the doctor on Monday spent $273 on an office visit, got a steroid shot and a prescription for antibiotics. I felt a little better that afternoon and the next morning and managed to gear myself up to go on BubTar's field trip with him. By the time I got home I was starting to feel much worse and have just been getting sicker since then. I'm dizzy, coughing, wheezing...I can barely talk or walk without getting incredibly winded. I can't even drive the kids to and from school because I'm afraid I'll pass out at the wheel because I'm so light-headed. I've been coughing with such force that I pulled some chest muscles and I think I've been coughing up a bit of blood, too. In short, I'm quite miserable and I haven't been sick like this in ages. I haven't even needed my inhaler for years prior to this! I called the PA back this morning and she called out a prescription for a course of oral steroids, so hopefully this will do the trick. I do not like being sick like this!

Last night, Josh brought home Pei Wei for our anniversary dinner since I was obviously too sick to go anywhere. It was a far cry from date night...Josh sat at the table while I half-sat, half-laid on the couch while KayTar INSISTED on feeding me several bites of my food. She told me, "I'm the second mommy in this house, so when you are sick, I'll take care of you like you take care of me." Later on, BubTar cuddled up with me for a while and watched Charlie and the Chocolate Factory on TV (which is the play we went to see for his field trip, actually!). Once the kids went to bed, Josh played Wii while I laid on the sofa, alternately resting/trying to expel my lungs from my body with the force of my coughing. Josh took note of my declining condition and brought me VapoRub and my inhaler, then sat with me and rubbed my feet while we watched our Wednesday night TV shows until I finally felt calm enough that sleep might be possible. It certainly was not the most romantic anniversary on record, but I did feel extremely loved regardless of how sick I feel. Nine years ago, we were just two crazy kids in love and over the years we've taken that love, invested it in each other and in our children and it has paid out in the richest of dividends, and we intended for it to continue to do so...For better or for worse, for richer or poorer, in sickness and in health, as long as we both shall live.

Taking a sick day...

While I'm sick, hop on over to Good Mom/Bad Mom and read the story that Jenny, The Bloggess, wrote for our KayTar (who lamented the lack of princesses with glasses and hearing aids)!

Well, that was unexpected.

Yesterday, my big plan involved buying myself new socks and resting a bit to fight off a cold. Instead, I spent the day at the Children's Hospital because KayTar needed urgent surgery!

Yesterday morning when Josh tried to give KayTar her usual morning feed, he couldn't get the Pediasure to run in. He tried flushing the tube with a syringe of water, thinking maybe there was some build-up in the tube, but it ran back out. He called me to look at it and I discovered that the stopper on the closing latch was missing...probably stuck in the tube, causing the blockage. DANDY! I emailed our pediatrician who told me to call our surgeon. I left a message with the answering service and started getting ready. While waiting for a call back, KayTar woke up and started coughing and vomited some. The coughing was causing fluid to leak out of her tube (the stopper seemed to have lodged itself in the valve, causing her stomach contents to spill out. Yummy, right?) I got a call from the pediatrician who had texted the surgeon who told her that he could squeeze us in between cases and to call the clinic and tell them that. So I did. While I was on hold with them (they had to page him to verify what I told them), the pediatrician called back and told me that the surgeon said to just show up at the clinic and they'd get us in, so I hung up on the clinic and started packing up for a day at the hospital. The clinic called back and said they could see us as fast as I could get there, so off we went, with everyone on the same page, finally.

KayTar has a Bard button, so it has to be switched out by the surgeons. It doesn't have an internal balloon to deflate, it has a hard mushroom that is difficult to remove and requires some force for both removal and insertion, so the surgeon has always told us that it is best done under anesthesia in the OR, so when we arrived at the clinic I made it clear that I did not want it done while she was conscious. The second consideration was her hypoglycemia and the fact that she had been NPO for a while, and the longer she was NPO, the more she was at risk for becoming hypoglycemic. That left us with two possibilities, going down to the ER, get an IV set-up, get admitted to surgery and wait for a surgery time to be scheduled or try to get her into day surgery as soon as possible, sidestepping the ER and admission, but possibly facing too long of a wait without any sort of carbohydrates or fluid. The surgeon we saw said that it could go either way, depending on the day and the case load in the OR and ER, but after talking to his colleague who was in the OR that day, he felt that our best bet was going over to day surgery and getting to prevent hypoglycemia.

We discovered the clog about 7am. We left home at about 9am. We arrived at the clinic at 10am. We were in the day surgery waiting room by noon. They took her back at 3pm. She was in recovery by 3:20. We gave her a test feed of Pedialyte at 4, and we were released at 5, after she kept it down for an hour. We were home a little after 6pm. It was a crazy day, definitely not what I expected when my alarm went off yesterday morning, but I'm glad it went as smoothly as it did. KayTar came through surgery like a champ, her biggest complaints yesterday were discomfort from her tummy leakage and the removal of her chest electrodes (she's actually still wearing one today). My little cold took the opportunity to morph in to bronchitis, it seems, but all in all, everything went really well. If it had to happen, at least it happened yesterday when my major finals were already over!

ARD time!

I know most people hate ARD meetings (Admission/Review/Dismissal meetings for Special Education), but as I've said before I really enjoy them. KayTar is such a hoot, both at home and in class, that about 50% of the meeting is trading hilarious stories about her. The other 50% is the actual meeting part and to date, I've never been in disagreement with the staff's plan for KayTar. Today was no different!

My baby will be a MAINSTREAMED Kindergartner in the fall! :) Cognitively, she is far above a Kindergarten level, she reads/comprehends at least as at 3rd grade level (though, she DOES read from our college textbooks just fine), can do simple math, and just this week she taught on of her teachers what phlanges are and held an impromptu session on hypoglycemia in a neighboring PreK classroom. Kindergarten is below her intelligence level and I would think about requesting a grade level advance at this point except for the fact that she really needs to learn how to behave properly in a structured classroom environment first. KayTar knows A LOT, and because of this, she has a hard time sitting back and letting the teacher do the teaching and letting her peers answer questions. Most, if not all, of her goals for next year are social speech related.

As far as accommodations at school, she will get preferential seating in class so that the teacher is on her right side (due to her profound left-sided hearing loss) and she will have a medical plan in place for her various maladies. She's require more meds at school meds next year because it will be a FULL DAY, and she'll need at least 1 tube feeding while she is there, too. We are also going to get a PT screener (not as in-depth as an eval) to see if she will be functional in PE without adaptations because of her lagging gross motor development. She is still labeled as "speech impaired" because of her initial evaluation at age 3, but that is CLEARLY not the case any longer, so in the fall she will get her speech eval earlier than required to fix that. All in all, it is a good plan for her!

Wordless Wednesday: School Portraits!