I can’t believe how long it’s been since I posted!
It’s been a mixture of tiredness at the end of the day, not having much new stuff to report, and feeling like my life is just one big blur of kendall issues, and really how exciting is that to blog about? So – this may turn out to be a ridiculously long post, catching up on everything that has happened in the past, what, like three weeks?
first – Kaylen has just started talking up a storm. It is so cute and fun to hear her new words. She is into repeating everything you say to her, and you can just SEE the concentration on her face trying to figure out how to make that sound. I will say that it has GREATLY reduced the random annoying tantrums because at least now she can feel like she is being heard and understood first before just being told “no” or “go clean up that mess!” or “bedtime!” Some things still come out very “kaylen-ish” – here’s some of my heart-melting faves:
Foofah – as in “more foofah peeze mommy” – this is actually a very grotesque concoction made up of 8 ounces of water, a big squeeze of hershey’s syrup, and then just a dash of milk to color the water (because she is still reacting so badly to lactose). She loves it, and it keeps her hydrated. Plus its so danged cute to hear her ask for foofah!
Fuff-oo – as in “ I fuff-oo mommy” – love you. So sweet. And our favorite car game is to get Kaylen to repeat I fuff-oo about everyone in the family – “i fuff-oo keeyee, i fuff-oo kissa, i fuff-oo ken-o” and then it progress to fuff-ooing every random thing seen out the car windows (cows, grass, corn fields, etc.) (ps – that’s nail polish on her face – precious isn’t it???)
Good morning sshhyyyynnnnnne!! – she says this to me now when i go to wake her up in the morning – good morning sunshine! – because its what i always say to her. She started repeating it last week and it just melts my heart still. that kid sure knows how to redeem herself, i’ll give her that much!
She also was able to tell me this week that something “hurts mommy hurts” in her diaper area. Then she proceeded to take her diaper off, lay it carefully in the crib next to her and say “off mommy. hurts.” I don’t even know where she learned hurts from – but to put it together – her language skills have to be just skyrocketing. This is seriously all happening in the last month. Prior to that she had a very few words – i really thought we might have to get referred for an evaluation for speech services or to re-check her ear tube placement at her next check up!
Kealey and Karissa continue to have a love hate relationship with each other. I can’t believe that I am honestly at that point of wondering when school starts again! some days they are the best of friends and just play together so well, help me, help each other, work as a team. Other days they just want to claw each other’s eyeballs out, which in turn makes me want to claw my OWN eyeballs out from having to deal with all the screaming! and it doesn’t matter if they’re inside, outside, tired, not tired, too much sugar – it just happens. I am hoping that once my own attitude improves on any kind of level that it helps restore peace and sanity to my house.
I don’t know how to really address or describe my “attitude problems” other than – i guess its just becoming more apparent that kendall’s issues are long term, and i am still learning to adjust to that. Some days i just deal with it better than others. some days i am filled with hope and optimism that one day we’ll wake up and she’ll be sitting up in her crib babbling away and it will be as if nothing ever happened. Other days I get a copy of this lab report or that test result and i’ll be sunk into a pit of despair over what it means, how to deal with it, how to fix it, what can i google about it. I am driven by a need to understand it all, to make it all make sense, to find her answer, to make it be an answer that we can all LIVE with. It wears me down. i have to make a very conscious effort to start every morning by crying out to God to please give me strength to get out of bed, to deal with whatever the day may bring, to help me be a good mom to ALL my kids, to appreciate the good things in every day. And it’s not like I get a 24 hour pass with that – i find that i have to continually keep renewing my pleas for help, and strength, i have to keep forcing my thoughts away from negativity towards happiness. I think i am maybe making it sound worse here than it really is. Really, we do function pretty well throughout most weeks.
but its definitely an adjustment still.
She does make small little improvements week to week though:
The picture above is her sitting in a very supported position through her hips and thighs, but she is actually putting her own arms down as a semi-support. what you can’t see is that her wrist is bent under in a hyper-extended position and her other elbow is basically backwards, but it’s a small step – figuring out that she has arms that she can use.
she is starting to hold two small toys at once, and reach for toys just slightly out of her grasp. Last week she “problem-solved” for the first time by grabbing a corner of a blanket that a toy was on and pulling that toward her to get the toy. These are all pre-cursors to her actually wanting a toy badly enough to attempt to roll over and get it. Being able to roll over will mean that she has developed core (ab) and hip strength enough to start attempting to sit on her own. Right now she is still extremely floppy, and her joint hypermobility (basically like being double jointed ALL OVER) is seemingly getting worse. Her physical therapist has ordered a special suit for her which will basically velcro her body parts into the right positions, so we can stop doing a “limb check” every time we pick her up for fear that an elbow, knee or shoulder has popped out of joint! It is really tough sometimes in therapy to watch her work SO HARD just to do normal baby stuff, like hold her head up when she’s on her tummy, or hold two toys at the same time, or stay on her side so she can use both arms to play. And yet, its still so amazing to see those little baby-steps of progress.
she’s been tired this week – I think fighting a stomach bug which started with a BANG last week on fourth of july! literally. If you have ever watched a kid vomit and had sympathetic gagging – wait till you’ve seen vomit through a g-tube. It’s like something on the “mythbusters” show – the pressure just builds until one of the ports pops open and spills stomach contents all over the car seat (as happened on our way to church last sunday), or, you hook up her “burping tube” and again, stomach contents come rushing backwards like some kind of gross slurpee machine. It puts the Nast in Nasty that’s for sure. I THINK she is finally coming around from that. It has worn her out all week – she takes about a 2 hour nap after every therapy session, and when she doesn’t have therapies, she catnaps after every time she is “played with” by me or her sisters. I am hoping she is on the tail end of this. It is tough to see her so worn out and just not her usual happy self. She has been tube-puking a little less, although what is coming out the other end is still ….ok i KNOW you all don’t want to know this, but seriously, unless i blog it here sometimes i can’t remember what was happening when and then i can’t be on top of my A game when docs want specifics!
We started her on a new formula on Wednesday. Well actually this is the second of the new formulas we have tried since surgery – the first gave her immediate watery diarrhea, which we mutually agreed was not a viable option for a kid already malabsorbing food and hovering around a failure to thrive diagnosis. This new one is actually not as broken down (elemental) as her regular formula, but it has fats that are supposed to be very easy to digest compared to regular formula fats. Supposedly her reaction to this will give her GI doc a good idea what direction we are headed with regard to further pancreatic insufficiency testing, blah blah blah. I think its a rather roundabout way to test such a thing but hey, whatever works. I honestly can’t say that I am impressed with the results thus far. It is back to mostly just mucus, except it happens now about 4 times a day vs once every 2 days, and it has now become speckled with what I can only assume is old blood from somewhere in her GI tract as I don’t think this formula has anything that resembles banana strings or coffee grinds in it. the grossest was yesterday when she had these little slimy black stringy things coming through her tube when i went to burp her. good times.
So we wait till Monday or Tuesday and see what he says. I say tuesday only because her nutrionist will be out then to weigh her again as she is pretty worried about her weight these past few weeks since surgery. She looked to have gained back the 8 ounces she lost while inpatient in June at last week’s check, but the overall net gain for the MONTH was one ounce. for a kid on continuous feeds (or near continuous), that’s a bit alarming. Add in a nice weeklong bout with a stomach bug causing her to have formula/volume intolerance (meaning she was on some pedialyte feeds to keep her hydrated as she would just retch and then puke through the tube any formula), and I am sure we will not be looking at a miraculous gain this week. I can feel her ribs again and her spine is more prominent than it had been when she was finally starting to pack some ounces on her! I think she’ll bounce back soon – all this formula changing can’t be helpful, but if it gets us closer to some kind of answer then it will be worth it.
I actually had a glimmer of excitement this week after getting a copy of all Kendall’s labs from every inpatient stay. A test was run on her in february which measured organic acids in her urine. There was one odd finding on there which the doc breezily threw out to us in february as being an abnormal finding, but definitely attributable to her malnutrition at the time. I swear to you every time I hear that she’s malnourished I want to scream! Malnourished is kids in africa who are dying of AIDS and have NO FOOD. Malnourished is poor children who are abused by parents too strung out on drugs to care about their kids. My daughter is NOT malnourished. She is MALABSORBING food because of some condition which none of our doctors can seem to figure out. Ok – now that that’s off my chest…
So in february we were all like – ok – abnormal results mean only that she is indeed failure to thrive, and once we stick this tube down her nose and pump her full of formula life will return to magical disney happiness and weight will be gained and milestones will be achieved. Except it didn’t quite turn out that way. Anyways – so now that I can see the lab reports for myself I can run them through my Google PhD and come up with my OWN theories and answers. One of them was a POSSIBLE cause of her issues known as one of a group of “inborn errors of metabolism”. Basically, her body is lacking one specific enzyme which is, unfortunately, the “instruction packet” for the body on how to break down proteins and fats and use them for energy and nutrition. Imagine getting five boxes from ikea which you THINK is supposed to be a dresser, but you get no little slips of paper with helpful illustrations. Just boxes. and lots of wood. and a handful of screws. You can add all the wood and screws you want, but if you don’t know what to do with it all – you just wasted a whole lotta moolah. And in essence, that is what I THINK is going on with Kendall. I know her docs are probably going to have 308 reasons why she CAN’T have this particular disorder, but its going to take a whole lot of convincing to get me to back down on this one without a fight for more testing. It is the ONLY thing thus far that explains ALL of her issues – the buildup of this acid in her blood (the one that needs the instructions in order to break down the food) leads to hypotonia, fatigue and weakness. The inability to process the food leads to failure to thrive, poor growth, poor weight gain. The ensuing poor nutrition leads to increased susceptiblity to infections. AND – in a coup d’etat of random symptoms – most kids with this disorder do BETTER on antibiotics because it kills excess buildup of this fluid, and allows stomach fluids to stabilize. We have ALWAYS been shocked at how well kendall seems to do when she is in the hospital on IV antibiotics. All my other kids got horrible diarrhea and diaper rashes when they were on antibiotics. For kendall its the complete opposite, in spite of being on some pretty heavy duty drugs.
So anyways – there’s my boxtop medical degree at work. It might not be her answer, and I am ok with that if it TRULY isn’t. It is something that CAN be fixed, and most kids respond SO WELL to the treatment – regular B12 vitamin shots. Seriously. That’s it. i mean, sure, there’s still a lot more involved, like a highly specialized diet, possibly some therapeutic long term courses of antibiotics, IV fluids at the first sign of metabolic decompensation – but seriously. shots of a vitamin. You can see why i am jumping out of my skin to see if THIS is her answer. Such an easy fix! Something she can live with! Somethign we can ALL live with! But – i will try to not get my hopes up too much at this point in time. i will try to wait until I hear from one of her doctors what they think about pursuing this. I know God’s hand is in this, and on her, all the time.
This week, after a particularly crappy start to the week with the rain on my birthday, the sick baby, the massive amounts of bodily fluids being constantly puked/pooped onto me – there were some bright spots. The first being the arrival of the specialized formula. I had misunderstood our doctor and thought i was supposed to go find this formula in any old CVS or Jewel store. I went to about ten different stores searching for this holy grail of infant weight gaining material to no avail. It was frustrating and disheartening. All of a sudden wednesday morning, the doorbell rings, and there is the fedex man, holding a box with two cans of formula in it. It was a little thing – but it lifted my spirits. God knows what we need, and when we need it. Always.
Secondly – her therapist on Thursday just happened to have a pair of extra shoes laying around that were perfect for Kendall – high top, supportive, firm bottom, right size, and girly. She also happened to have a pair of the supportive shorts I was supposed to have ordered for her in kendall’s size. We got her outfitted up, and there my baby girl stood – putting weight on her legs, using her own hips and core muscles to actually hold her upper body somewhat upright. She was so proud of herself. It was amazing to see. She then proceeded to get very upset at the cute spandex shorts because she couldn’t pull her toes up to her forehead to go to sleep like normal and the shoes made her feet WAY to heavy to pull up anyways. But that’s ok – this is just something we have to do. The Hip Helpers actually help her stabilize her hip joints so that she stops hyperextending them, and helps her brain receive input that her legs are attached. The shoes work in a similar fashion by putting in proprioceptive input so that her brain can start creating communication pathways between her legs and her brain, so she starts using her legs in a more purposeful fashion, vs. just letting them flail where they may, or tucking them up in frog leg position when she’s tired. When I took this picture of her standing up – I just thought of Forrest Gump talking about his first pair of shoes – “momma said they was my magic shoes”…
she has to wear this combo (shorts and shoes) for a few hours every day (or as long as she’ll tolerate it) so that she can start to use her muscles appropriately. Once she gets her special joint suit that will help her upper body get the same input. I am not quite sure how that will work with her tubey button in the middle of her tummy – but I guess we’ll cross that bridge when we get there. considering that nothing on a state level moves at the speed of light, I am not anticipating having to deal with it anytime before fall at least!
this has turned into a novel length post – i better stop here so that it actually loads up to the server! I’ll try to be better about posting this week- hopefully we all stay healthy for a while! Hope you are all feeling well and enjoying this beautiful summer weather (well, I hope you have beautiful summer weather wherever you are!)
PS – note to self – blog about the dead animals around here, kaylen pulling out all 400 napkins from the costco pack as depicted above, the day of poop yesterday, funny commercial and kittens *inspired by KITTENS*!