I’m so tired I’m not even sure if this is going to make tons of sense. So consider yourselves warned.
In a nutshell, the winter viruses have started already. I’m struggling to not feel like its our typical pattern of mild colds that linger, turn into sinus infections, and eventually land K4 inpatient with RSV. I HOPE that’s not the way it goes, but history has a kind of odd way of repeating itself around here. For now, we are just dealing with the fun-ness that goes along with two mouth breathing, snotty-nosed kids who have massive headaches most of the day and take it out on each other or anyone around them. I don’t mean to sound like that’s complaining, cause really, I’m not. I know everyone is sick at this time of year and I’m sorry for those who are dealing with so much worse! But because I myself am also fighting whatever crappy-crud this is, it is sucking every last ounce of my already low energy, making it hard to get everything accomplished in any given day that HAS to be done.
Gearing up for the party this weekend is taking most of the time – I am SO excited to be able to see so many of you there who can come! If you are thinking of coming but don’t know the details – please email me so I can get you the directions/address! Making decorations, trying to get food squared away (well – snacks more than food!), having to make the video, print photos – I know i SHOULD let some of it go but it’s all so much FUN to me and I hope that it is worth it all on Saturday nite!
THIS IS ONLY FOR THOSE WHO HAVE ASKED: A Gift List has been set up at Target just to help get ideas for the sizes Kendall wears and the kinds of things (like jeans and pants hurt her belly a lot, so we do a lot of onesies, dresses and leggings or tights) she wears, as well as a few of her favorite “characters” and toys. And the T-pain microphone is most definitely for
me her. The website is being a pain for me tonite – but if you go to Target.com and/or into a store, you should be able to find a list by searching for my name, and the list name is “Kendall turns 3”. But this party is totally not about gifts – so don’t stress it. We want to just be able to say thank you to all of YOU who have been such a big part of her story!
Beyond that, I’ve been dealing with a lot of “inner turmoil” with regard to a different K – Karissa Lynn (K2). She is 7 years old. The cloud gatherer. The one who wants to be a “beautiful princess ballerina dance teacher mommy person” when she grows up. You may or may not know if you’ve been around for a while that she was born with a spina bifida occulta defect. These are the most mild kind, and typically present very few, if any, issues. Most people notice a small dimple or a patch of hair over the lower back of their baby, some possibly need followup ultrasounds, most are duly unconcerning to pediatricians. Karissa’s “dimple” was more of a “hole” – I could fit my entire pinky finger tip in it when she was first born. You could see threads of what I assume are skin or ligament type bands. (I know – its not the most appetizing thought, sorry.) She was referred for multiple ultrasounds, multiple visits with orthopedic specialists – and in the end, in spite of her legs dislocating ALL. OF. THE. TIME. – we decided to just continue on with chiropractic care to help treat the hip dysplasia and some sleep positioning (and lots and lots of prayerful pleading with God to just please fix her because I could not keep popping her legs back into place every time I changed her diaper). And then one day her ultrasounds had improved! And she started spontaneously moving her legs, and then she could sit up, and on and on it went. We had to go to a few more PT evaluations because she was so hyperflexible as a baby that her Early Intervention therapists were concerned that she would possibly have trouble in a learning environment (because she can’t just SIT UP in a normal position without doing funky things to her arms and upper body), and her complete lack of a response to pain in a few scary situations (extreme heat and extreme cold) earned her a workup at the spina bifida clinic at Childrens Memorial when she was almost 2. Again with a few more modifications, and a few other road bumps at the time (ear tubes to try to correct the 90% hearing loss she also had) – and we thought we’d fixed her right up. Then she started peeing blood, and we were looking at more tests and more medicines and more surgical consults. And then Kendall was born and off to the wayside went Karissa’s seemingly mild and mostly under control problems.
which is why I started feeling horrible over the summer as I became increasingly concerned over a number of things that I noticed in Karissa were just an ever so slight downward decline. Instead of improving or getting more used to certain routines and activities and educational tenets – she was getting worse. Instead of having MORE energy as the summer progressed and she got older, she had less. and less. and less. And this was at a time when dance lessons were on a break for the summer so i couldn’t blame it on that. I told myself that once school started and she got on a schedule she would be better. But again – no dice. By the time her teacher called me one afternoon after school to discuss a few concerns, I knew the time to stop denying all of these signs was up. Given all of the work and effort we had just put into writing Kendall’s IEP (special education plan), her teacher and I decided to do things on an informal basis for a few weeks so we could re-assess where she is at the halfway point around Christmas break.
There are so many other details to what is going on now that I can’t possibly get them all out tonite.
But the bottom line is that we will be needing to schedule an MRI of her head and spine ASAP (which means sometime in the next 2-3 weeks in outpatient timelines). i’ll explain why and what we’re looking for in another post tomorrow hopefully – but for now, know that this is where my mind and heart have been at. Suspecting some things, trying to ignore others, chewing it over and over and over again in my mind. I still hope that my mommy instinct is wrong on this one. But even if I’m right – she will be ok. We will all still be ok.
We appreciate the prayers – they are all that keeps things moving around here some days! One foot in front of the other, right?
Thank you for checking in on us! I’ll have more info/details in tomorrow’s post that will hopefully make lots more sense! (and a lot less nasal congestion in general up in here!)