STILL? I have no idea why – but this has seemed like the longest day.
Probably because I am still trying to employ deep breathing techniques that the remote control has been lost. i didn’t think we watched THAT much TV, until it was stuck on disney channel for about two straight hours and i realized that the banality was making me want to chew on drywall or something equally as chalky. It has seriously disappeared into thin air.
And it was just one of those days where it took about five hours to get going, and even then i had no direction of where it was i needed to go. and everything was just FRUSTRATING, but not for any particular reason.
But thank God for darling wonderful babysitters who can just come in and make it all go away by letting me just go away. I got the two cranky babies down to bed, grabbed the laptop, and off to panera i breezed. I *heart* free wi-fi. Pair it with a good bowl of soup and it’s a little slice of heaven. At least i can catch my breath, do a few sun salutations to lower the blood pressure about the @#*(%@#) remote and go back to the chaos a refreshed momma.
This week seems like the kind of chaotic week that will not even allow itself to be put on paper. I am, by nature, a listmaker. If you really truly know me, you know about my list fetishes. Which has spawned a notebook fetish. Which then spawned a “special pen” fetish. Don’t read my lists, don’t doodle on my notebooks, and don’t lose/touch/look at my special pens. Some people have prized china, i have prized $3 notebooks and pens. Sue me. ANYHOO. The list.
The list is sacred. Ask ben. he has the bruises to prove that trying to read my list will have dire consequences. But i MUST MAKE THE LIST. It can be any kind of list. Usually it starts with a list of the lists i must make, and eventually it resembles some kind of ordered to-do list for the week. It helps me attempt to make sense of the chaos, even though it is usually more like a vague road map to nowhere then an ordered checklist of things accomplished. But it loosely gives order to the weeks, in some small way. And this week, I can’t even make it make loose sense. I was able to plan the details and logistics for tomorrow, and beyond that i am hopeless. I really have to keep reminding myself that tomorrow is Tuesday and then the next day will be Wednesday and anything past that is way too far out to think about! I have no idea how or why this week seems so overwhelming, but i am optimistic that some magical sense-making fairy will visit me tonite and ease the ache of my brain trying to work so hard.
I haven’t really thought about tomorrow’s appointment. I guess because I really don’t know what to expect! I will be shocked if we walk out of there with any kind of solid answer, but will be completely unsurprised if we have lots more shrugging of the shoulders going on with the docs. If we leave with ANY kind of helpful info, i will consider it a success! But thanks to everyone who has called, texted or emailed with support and good thoughts! I am always so encouraged to hear/know that so many of you are out there and following our story and praying for Kendall and the rest of the family. It humbles me each and every time I hear from one of you! So keep them coming! And we do ask for your prayers for tomorrow. It’s a long drive regardless of any other issues at play, and for traveling safeties alone we need the prayer!
GOOD NEWS! At nutrition therapy today Kendall had gained 10 ounces!!! she is FINALLY over the 16 lb mark – 16 lb. 7 ounces! 28 inches (which is about the same as last month, but no worries about height yet!) So in spite of her crazy horrible weekend last week, she still managed to gain just over 3 ounces a week for the past 3 weeks. Now granted she has been on pretty much continuous feeds since we got home because i am DE-freaking-TERMINED to not have that happen EVER. AGAIN. – so she’s been getting almost triple the calories she needs this week. But hey, if that’s what it takes to see some real weight gain around here, I’ll take it!
Friday we did find out from immuno that she is NOT anaphylactic to any of the foods we tested her for, which is a HUGE relief and praise –but she does have an apparently pretty severe case of FPIES – Food Protien Induced Enterocolitis Syndrome, = she’s allergic to protein. HERE is a site that explains it pretty well. The docs DO NOT think that this is her main issue. This is just yet another in the long list of “non-specific working diagnoses” that affect Kendall. this does do a lot to explain why she is still not able to tolerate “real food”, but it doesn’t tie everything together in a neat little package. we have to meet with yet another dietician to go over what/how to add foods to Kendall’s diet, but for now we get to start with one food, and trial it for about three weeks until we see her on Oct. 28th. I just went and bought Kendall’s weight worth of stage 1 baby food pears. Fun! Well, not as fun as the Cheetos Puff she was surreptitiously slipped two days ago by her partner in crime Kaylen, but i am sure she will grow to LOVE pears! REally, this kid is so ready for FOOD again that I am pretty sure she’d eat pureed brussel sprouts if they were offered from a spoon. Nasty.
The other part of immuno’s workup involved her actual immune response to illnesses/invaders. Which she had just about none of. Surprise surprise. Her levels of immunoglobulins are all low, but are still within normal ranges. Well, he thought they were normal ranges until he found out that she HAD just gotten a vaccine. He had mentioned that they wanted to give her another vax in office and observe her for a few hours, then take the bloodwork a few weeks after that again. I told him that was kind of a gamble considering she had just been vaccinated a couple weeks ago and SURE ENOUGH, bam, we’re inpatient again. She has been inpatient within 20 days of EVERY. SINGLE. VACCINE. we have attempted to give her. I could hear him flipping pages and he said wait, so she got a shot when? August 28th. And she had bloodwork taken when? Sept. 8th. And she had retained NO response to that vaccine. He let me know that her case was coming up for team review and they would definitely have a plan in place for us by our appointment. Good luck with that! Truly, I will be shocked if they have a plan for her. She doesn’t FIT into plans. she is anti-plan. He (dr. s) did let me know that IvIg (a blood transfusion type product that puts antibodies into your system when you cannot make your own) was on the table, but that it hopefully is a long way off, if we need it at all. The thought of it truly freaks me out, but i am glad he was honest enough to let me know that it MAY be the path we have to head down. He said that there are 7 causes of “hypogammaglobulinemia” (thank god i was a spelling be champion hey? I think that was one of my words…), and that they are going to systematically check off each of them before we feel like we need to resort to the IvIg (intravenous immunoglobulin). so yay – another fun “non-specific diagnosis”. But at least we’re making progress.
and SHE is making progress. She gets a little bit stronger every day with sitting up. She thinks she wants to stand up now and its so funny to see her wobbling around on her little chicken legs! she’s gonna have another think coming though if she thinks she gets to not crawl! Her DT (developmental therapist) says if its the last thing she does, Kendall WILL CRAWL! Don’t worry – she’s not even close to that yet seeing as she starts screaming anytime she has to lay on her tummy! It’s a long road ahead still – but the progress we DO see makes all that hard work so very worth it!
I have no idea how i turned this into such a long post again…sorry mary jane. Anyways – I have lots to plan for for our crazy day tomorrow! thanks again for the prayers and well wishes! we will update tomorrow when/if we know more!
have a beautiful day!