Finally. A week (almost) free of doctor’s offices, worries about Kendall, emergency room visits and random bodily fluids. It’s starting to look a little more like normal around here. and yet I can’t quite shake the feeling that we’re always waiting for the other shoe to drop, that another inpatient admit is right around the corner.
so I’m trying to put all that out of my mind and focus on the good things.
Like the beautiful weather of the past few days – FINALLY its more like summer!
Or my garden that is finally starting to produce real consumable vegetables (well and fruits if you’re part of the genre of folk who believe a tomato is a fruit).
And the taco salad that I made the other nite that actually turned out good! (Faith I think i found a similar recipe to yours!! I was so excited!) I think it was the first meal that I have made a la the old days in a LONG time. i used to be a pretty good cook. I used to be in charge of my life and my house and my three jobs and I was pretty good at it. This week I have gotten a glimpse of the possibility of getting there again.
It’s been a pretty quiet summer, but a good one nonetheless. We have had a lot of fun times just being together as a family this past couple weeks, and I hope it’s been as good for the girls as it has been for me. Kealey continues to be my big helper – she is learning how to stop pump alarms and disconnect her sister in order to hold her without pulling the pump/IV pole around with her. I told her she will be half a doctor by the time she’s in high school and she just looked at me and said “ but mommy – you KNOW i want to be an art teacher!!!” Ok fine, you’ll be an art teacher who can handle almost any emergency then, alright???
Karissa did end up getting her top four teeth pulled on Thursday. It has definitely helped in some ways – her pain level is way down, she isn’t protective of her mouth as much anymore, and she is actually trying to say words normally again (she was not using her tongue at all last week because it would hurt too much to put it against her front teeth to make certain sounds. She is starting to eat a little more normally now after a few days of just whip cream and smoothies. i think the reality of life with a cast has set in, i.e., no mommy cannot take it off whenever it gets itchy or you want to go swimming. We find out on Friday if the doc wants her to keep it hard casted for school starting or if we are going to a softcast/brace. he has a good point about the fact that she will be trying to play on the playground and learn to write and being bumped around by lots of other kids and without a cast on to help protect the hand she could re-injure it pretty bad. But the mommy part of me wants her to be able to start school without it. she gets so easily embarrassed when people are asking her what happened, and she walks around most of the time we are in public with it held behind her back. I am hopeful that a scad of new school clothes will help re-boost her confidence, but it’s a tough thing for a little girl like her. My heart hurts for her some days, and i am so proud of how well she has handled this whole thing. Her smile looks different without all her teeth. I can tell her body is doing a good job of trying to heal itself, but it wears her out still most days. This too shall pass though, right?
Kaylen has definitely learned how to communicate in the English language the past few weeks! She repeats everything you say, as if she is trying out new words and sounds on her tongue. Her funniest thing lately is to sing “Na na nana, hey hey hey, goodbye”!!! She’ll start singing it randomly, and of course our laughter is just the encouragement she needs to keep singing it. She is finally starting to interact a little more with Kendall, definitely taking on the role of “big sister helper”. Well, as much as having a heavy singing bear and your bottle thrown at you in your crib can be considered a help. Kendall definitely gets an apprehensively guarded look on her face when she sees Kaylen approaching!
and in Kendall news – no news is GREAT news! No bile pukes, no major crashes, no new symptoms! She is definitely having a good run since last Saturday – almost ten days of GOOD HEALTH! It seems like so little, and yet this is actually the healthiest she has been in a few months! the last time we saw this was in May when she started really putting on some good ounces. And of course then she crashed in early June, so you can see where my fear of the other shoe falling comes in. Sooner or later, something will happen. I can squeeze my eyes shut as tight as they’ll go, and pray as hard as I can, and shake that magic 8 ball 893 times, but none of that will change that this is just Kendall’s way. Two steps forward, and a few back. I am frantically pushing her therapists to make her learn stuff, do stuff, gain skills NOW – so that next time she crashes we don’t lose so much ground. Until we find and fix whatever the underlying issue is here, we will just continue to go in this bad cycle.
Tomorrow we have another follow up visit with Dr. A. I am hopeful that maybe we’ll get some of her biopsy results back so we can know more of what is going on internally with her. she had a few drips of apple juice from a straw last week courtesy of Memaw, and within 4 hours she was dumping it (her GI tract moves it through too fast because her pancreas and liver can’t handle the extra work required to try to break it down into useable food), and had bad diarrhea. From less than a strawful of apple juice. i just don’t get it. Lots of kids have apple juice. Lots of kids have a lot more food experiences than her, and they don’t react like that to regular stuff. I also caved in and gave her a taste of ice cream (literally like i just stuck it to her lips), and I am SURE that will come back to haunt me sometime in the next 12 hours (she doesn’t have regular BM’s, so we’ll see what color her next one comes out). But she looked so cute just longingly gazing at all her sisters having their ice cream cones, I couldn’t resist! No kid should have to live like this – never getting to taste or experience certain parts of life! I could handle knowing it’s a peanut allergy, or a shellfish allergy, or any other specific group of foods. But right now it seems like its EVERYTHING. And no one can tell me why or how to fix it. It’s frustrating. It’s frustrating to spend most of my day making sure she gets her 40 ounces in (she can’t handle the pump going too fast, so it takes HOURS for each feeding on the pump, and she just wears out when she tries to take it orally, and then falls asleep) – and then see a gain of a few ounces, or worse, a loss. WHERE is all this food going??? something in her body is burning it up at almost a faster rate than I can get it into her, and that is frustrating.
i have spent countless hours this week researching hearing tests and hearing loss in infants based on last week’s dubious showing at the hearing center. Her therapist shook a maraca in her ear like it was going out of style and said – oh she can hear! look how she turned to that noise! I wanted to point out that even Helen Keller herself could probably have heard that god-awful noise, but i thought it would fall on … snicker…”deaf ears”!!!! HHHHHAAAAAA – I slay myself. (ok tell me honestly you didn’t at least snort laugh at that!) Seriously – I know she CAN hear, some things. I have never doubted that she heard some things. I know she knows my voice. I know that SOME of the tests that she failed last week could be behaviorally based and therefore not TRUE indicators of what her hearing is like. But to fail all three so miserably and consistently? Add that in to my mommy instinct that something is just not quite right there, and I know we are headed towards some kind of “hearing impairment” diagnosis. I ignored that inner voice of mine for too long with Karissa, and it certainly did none of us any favors. Kendall already has so many obstacles in her way – if this is one thing I can help remove for her by being her voice and her advocate, I will do it. August 17th seems so interminably far away. She’ll be 9 months by then, which seems shocking to me. I remember Kaylen at 9 months, starting to cruise on furniture, wanting to be everywhere her sisters were, loving to eat real food in her big girl high chair, switching to her big girl car seat for our ride to Florida (ok so she wasn’t quite 9 months at that point, but its what I remember!)
What will life hold for this little floppy ball of love and drool we call Kendall? She is such a fighter already. She handles each new hurdle with a smile on her face and is content to just be held, no matter how she is feeling. She teaches me so much without saying a word, or even a consonant-vowel combo noise. We are so blessed to have been chosen to be her family.
As i know i get a lot of questions about “what next” for Kendall – here’s what’s coming up that we would covet your prayers for:
July 28 – Dr. A followup appointment. As he has been her main doc thus far, not JUST her pulmonologist, it will be interesting to see what he has to say about her past few weeks of metabolic issues, GI bugs, hearing issues and what the other docs are thinking/feeling with regard to her diagnosis. I think she will get cathed tomorrow to get a sample to run her organic acids again to see if the same numbers point to the acidemia diagnosis I was hopeful about a few weeks ago. Hopefully we also are able to find her biopsy results and see if they reveal anything about her stomach issues/lack of usable nutrition. We were also supposed to have a follow up sweat test for the cystic fibrosis diagnosis, but since that would require me leaving the house at 6 am with no babysitter, I went ahead and cancelled that. Considering her bloodwork has come back negative twice and we already have one negative sweat test under our belt, i think we need to start barking up other trees for reasons for her pancreatic issues.
August 5th – followup with her surgeon at CDH in Wheaton regarding her surgery and button placement. Considering that she has now managed to pull it out twice, and currently has “granulation tissue” growing where her body is trying to grow skin back around the tube, I think we need to have a discussion about other options from here. I don’t know if this will be as simple as changing her button out for a new one (although they are supposed to last at LEAST 3 months, some lasting over a year), or if we need to discuss other kinds of buttons, and/or possibly consider sewing her button into place for a little longer. The surgeon who walked me through putting it back in myself last week did say that kids with very low body fat often have a hard time having a thick enough abdominal wall to stabilize the button under the skin and that he sometimes sews them into place for longer than the normal recovery period. Somebody do SOMETHING because I hope I don’t ever have to do what I did last week again!
August 6th – our highly anticipated visit with a neurogeneticist downtown at Rush University. Supposedly she is able to pinpoint diagnoses in previously thought to be mystery kids, and we know she has already taken an interest in Kendall’s case. I am hopeful, yet very cautiously optimistic that we will get answers out of this visit. I would hope we would be able to get some kind of definitive answer regarding the mitochondrial disease diagnosis – whether that is something we are definitely thinking is near the top of the list, or whether we can go ahead and rule that one out for now. She is listed on the mito disease website as one of their specialists, so i feel pretty confident that whatever she has to say about it will be trustworthy. I am trying actually to keep my mind off of this appointment because I want so badly for her to be THE ONE who can kind of tie the pieces together for us, give us an answer, a direction, a hope that we will find the light at the end of this tunnel, and yet I’ve been there too many times to count. I know our hope lies not with doctors but instead with the Great Physician.
So there is today’s update. you just never know what the next day will bring.
Thanks again for all the prayers, comments and emails. Your words of comfort hold us up through the hard days and give us something to fall back on when things look great.
Hopefully the next update finds all still as calm and well…