For everyone who has so faithfully been praying, for those who have given of your time, resources, limited funds, and awesome cooking skills. For everyone who has left a comment, sent a card, or held us in your thoughts – this one’s for you.

I do’nt mean to make this blog always such a downer.

So here’s hoping this puts a smile on your face. it sure does mine!

I don’t think I ever gave the full update after we met with Dr. A the other day. Basically the plan is a very precarious balancing act – the 8 ounces of weight gain Kendall has had in the past week (coupled with clear breathing and a seeming slight relief from her pain) is akin to a house of cards, laid just so…

And our plan with the meds and the formula and EVERYTHING is just to back slowly away from this amazing sculpture of cards and HOPE it all stays together! We are not changing a THING. Sure, we’d LOVE to get her off a couple of her meds, but for right now, it’s hard to say which of them is doing THE trick, or which combo is just what she needed, so for now they all stay. And we hope they all keep working.

She is doing GREAT off the tube. There’s been more than a few close calls where I thought for sure we’d be dropping it again, but so far she’s managed to pull through.

So that’s the update for tonite. I have NO IDEA why there is such a massive delay between posting time, Greenwich mean time, and the time the subscription email shows up in your inbox. If you do – please email so you can help me fix it! I am also semi impressed that code I inserted TWO MONTHS ago to allow me to copy posts directly to facebook has now randomly started showing up at the TOP of each post. Weird stuffs.

Ok i am rambling. I have NO idea how i am still awake. Kendall was awake for more of last nite than she was asleep. brutal. i hope this post makes sense. but if it doesn’t, i am sure it will just blend in with the other crazy nonsensical posts.

may you all get more sleep tonite than I will! and THINK SPRING. someday it will get here.

t.

PS – WHO got kicked off Idol last nite?> I missed it and am too lazy to google…

This isn’t the “official” diagnosis, but it’s as best as I can come to in layman’s terms to describe what this morning’s round of testing and consults showed. In essence, the PDA is still there, but it IS closing according to the measurements between February’s tests and todays tests. The doctor (who looks just a tweed bit like a cross between Bill Nye the Science Guy and Albert Einstein, except both of them got a hold of a little too much wacky tabacky and had a good time hootin’ it up) – could tell me unequivocally that her heart is NOT causing her symptoms. That is as good as i could hope for – a definite solid answer. It’s kind of sad, because I truly loved this doctor. his bedside manner is AMAZING, he is so thorough, and he’s not all hyped up about this drug or that drug or even fixing issues with drugs at all (he suits my hippy granola ways very well!), but alas, we only need to see him every 12-18 months for a couple years for followup.

She DOES still have an audible murmur, she IS still shunting some blood to the wrong artery, but it is NOT causing her body to work hard. The problem, and hence the title of this post, is that her body is ACTING like her heart is the problem. She is having symptoms that everyone would otherwise classify as CHF (congestive heart failure) – the paleness, discoloring, sweating, other random “Kendall-ities” – these are all concerning signs – until you look at her actual heart function and realize her heart is acting just fine. So it seems right now like we are still searching for a possible GI issue, metabolic issue, or autonomic issue. But Dr. T (heart doctor) sat and encouraged us to follow our guts. He has a daughter with multiple medical issues and says it took them more than a few years to eventually get their answer, and they questioned whether to keep looking for answers a few times, but it eventually came down to following their guts and their hearts, and they were able to get her the appropriate level of help. It was really truly encouraging and as weird as this may sound, I believe it was Divinely Inspired for me to hear that today. I have been questioning whether this is all just becoming a figment of my overactive imagination due to sleep deprivation, and Dr. T assured me that it most definitely was NOT in my head. She is having a very rough go of it – and while no one holds a crystal ball – all signs point to our next 6 months not being as crazy as her first 6 months. But it doesn’t mean that she is “fixed”. We just have to find the balance between looking at too small a picture of her overall health (too many sub-specialties) and missing the bigger picture of what she is dealing with. I am so glad we have Dr. Natalie to help with all that. She is a very good big picture looker-atter.

So here we sit for a few more hours waiting for her appointment with Dr. A to get the next step in the plan. This morning went WAY faster and smoother than any of us could have anticipated. Kendall smiled through the EKG testing and slept through the Echo – a true answer to prayer because both of those reactions gave us the BEST possible views of her heart with the different testing functions. So thank you all for the prayers sent up already today. If you get this update, please pray that Dr. A is able to clearly see what our next step should be and that he can guide us in a way that fits with what Ben and i are feeling on our own. (Not that I even know what that is, I just will know it when I hear it/feel it!)

Praise God for excellent doctors and for a sense of relief over the heart issues, and pray that we would continue to get a good sense of direction.

Praise also that my sister is home safe and sound with babies firmly intact for at least a couple more weeks! This was a HUGE worry last nite and it looks much much better today. I am AMAZED at the power of prayer.

Another HUGE praise – Kendall slept for 6 hours last nite! She has not done this in WEEKS and it was so very needed by Ben and i last nite. I don’t hold out a lot of hope that this trend will continue for very long, but at least for one nite, it was awesome.

So that’s what I know for right now.

Thanks for the wonderful encouraging comments, emails, and facebook wall posts. They put smiles on our faces and pep in our steps.

Will post more tonite after we get home and know a little more!

Have a wonderful Tuesday!

terra

Today’s fun word that makes my tongue happy. When I was in labor with Karissa this was my focus word. Or phrase. Whichever. I laid there in the pool and just said tectonic plates over and over and over again. don’t ask me why I made this tonite’s post title. I think the words are just stuck in my head because I am beyond tired and can’t think of anything else at the moment.

Tomorrow morning we will pack up the baby and head to the hospital for a long day of testing. it won’t be non-stop testing all day, but it will be a lot of “hurry up and wait” for a few tests and then a few follow-up appointments with cardiology and pulmonology. Honestly, I am not expecting a whole lot out of this day of testing. We know she has/had a defect in her heart called a “PDA” – patent ductus arteriosus. Basically an extra arch in your heart that EVERYONE has – it’s just that almost everyone’s arch closes by the time you are 2 days old. A large PDA CAN cause feeding/growth issues – but her original Echo test in February showed that hers was  small. Actually what all her OTHER doctors told us was that it was very mild, very small, didn’t play into her issues AT ALL (as her monitors were going off around us that her heart rate was above 220). Right, ok, got it. her heart is beating at a rate too fast for most ADULTS but this hole in her heart has ABSOSMURFLY nothing to do with it.

Fast forward to a few weeks ago when I get the actual reports from that inpatient stay and the report says that it’s actually a mild to MODERATE sized PDA, along with 3 or 4 other “areas of insufficiency”. A Vastly different picture than we were first led to believe. Frustrating, but you know, we’re being told by three or four of her docs that her heart is FINE and to stop worrying about it. So you try to do that. We never really felt settled about it because it just seems so ODD – to be told there’s a hole in your daughter’s heart that is known to cause issues similar to what she is dealing with, but don’t worry about it – as soon as she gets some calories in her it will close right up. And I was pretty much there until I started noticing her coloring getting all wonky at weird times.

I could live with the weird color changes of my karma-karma-karma chameleon child, but then I started noticing that she was getting VERY sweaty and clammy in the middle of her feeds. I actually thought this was more of a hypoglycemia issue, and brought it up to her GI last week who was quick to inform me “oh no no no, you only see issues like that in kids with heart defects”. When I casually mentioned this to our ped while she was checking Kaylen for strep throat last week, she decided to call up the cardiologist and get this straightened right out!

So that brings us to tomorrow. I don’t know what to expect or even hope for. I am beyond tired from the constant night wakings of Kendall who is still clearly dealing with large amounts of pain from somewhere in her body. I just wish I knew how to help her better. I am VERY encouraged by her progress with bottle feeding, and I do feel like she IS finally gaining some weight (i think she may have finally made up the pound that she lost last month!) – but I don’t feel like she is “fixed”. She is “between crises” I think.  But maybe this is just the tiredness talking. Maybe I am just tired of hearing doctors take stabs at random generic diagnoses and not getting to the ROOT of what her problem is.

But then again – maybe tomorrow will be the day. Maybe tomorrow they will still see the hole in her heart and be able to say, yes, this is it. if we close this archway, her blood will flow to the right place, her calories won’t be being burned up like gas, and THEN she can start thriving. We can hope.

Sorry to be such an incoherent downer tonite. I just need a really big boost of GOOD news or GOOD direction tomorrow. I need more than 3 hours of disconnected sleep tonite. Kendall needs a pain-free night and mercies to endure her tests tomorrow WITHOUT a lot of squirming around or freaking out about not being in HER crib for naptime. We have a lot of running around to do to get the kids all taken care of at the right times, so please pray that all of that works out.

and in one last prayer request, if you have any prayers left after all that – my darling baby sister is in the hospital AGAIN right now getting her contractions monitored and drugs pumped into her to stop her premature labor AGAIN. She is pregnant with twins who are trying to come about 8 weeks early. From what I am hearing tonite, they need at LEAST another 2 more weeks in there to have the best shot at leaving the NICU quickly. Pray that the medical team attending to her tonite is able to support her and the babies in the best way possible.

Thank you so much for praying – today and always.

Will update as soon as i know more.

terra

At least according to Kendall. She has decided that 4 hours is quite enough for her thankyouverymuch, and that instead it would be more fun to just scream all nite, throw in random episodes of choking on her own saliva, and in general wreak havoc on our house. So for all of you who see her cherubic smiling little face during daylight hours and tell me “Oh but she looks so good!!!!”, feel free to come on over about 3 am and see how precious it is then!!!

Truly, she is looking better. She is ALMOST back up to her all-time high weight of 10lbs 15 1/2 oz. Her wrists and cheeks are where i see it the most, the little filling out she has been doing this past week or so. She is definitely starting to do a lot more PO (by mouth) feedings, but the tube stays in for nighttime and supplemental feedings and for medicines. She is on 5 prescription meds 2 times every day, and then as much tylenol and simethicone (gas drops) as I can get in her to attempt to keep her comfortable. She is clearly still being bugged by something. Our 2 GI appointments last week (with new doc and then with crazy lady doc again as followup) yielded nothing really new. They both agreed on a new med, both are CON-fricking-VINCED that the neocate formula is threemeeeeeelyon times better than the AA that she is already on (and both agree that it is next to impossible for her to have had the hives reaction to it, it’s hypoallergenic. right, cause you know, MAYBE it was that huge batch of strawberries and peanuts i gave her instead that gave it to her!!! idiots. She is consuming formula and only formula….maybe just MAYBE it was the formula.) Clearly I could go on with sarcastic comments about my true thoughts on their theories, but i’ll spare you.

Crazy lady doc DID have the presence of mind to send us for an immediate X-ray of Kendall’s tummy to “see how much poop is in there” (at that point it had been almost 6 days and only one measly little watery poop that whole time). The X-ray came back as totally clear of fecal matter, but oddly enough, she started pooping the next day and pretty much hasn’t quit since then. So either the X-ray can’t really see poop good, or her body just DECIDED to make a bunch of poop right after the radiation. Who knows with this kid?! But at least it was SOMETHING, the X-ray, and at least she seems better during the day since Poopfest ‘09 started. Nighttimes are still another battle, but I’ll get to that in a second.

the other interesting part of our appointment with crazy lady for follow up is that I asked her about some weird labs that I got from Kendall’s last inpatient stay in March. Her blood sugars were crazy low and then crazy high within 24 hours of each other, and i asked if that could possibly explain why she got so pale and sweaty while she was eating, if it was POSSIBLY hypoglycemic related. Doc says in her best “oh you poor imbecilic mother over whom i have ultimate knowledge and degrees” voice  — “No no no, you only see that kind of thing happening in kids with heart defects”. To which I incredulously replied, ” SHE DOES!!! She has a PDA which NO ONE has followed up with!” Doc all of a sudden had a very pressing matter needing her IMMEDIATE attention and ran from the room going “oh well I am sure your pediatrician is on top of that. See you in two weeks!” and shut the door behind her. I was BAFFLED.

In a turn of events that would ONLY happen here at our house, Kaylen decided to spike a 103 degree fever that nite, so I had to get her in with our ped, Dr. Natalie that afternoon (Wednesday). When I relayed our conversation to her, she immediately became upset that no one had informed her of the cardiologist’s report and she called to get one sent to her.  Within 24 hours of that appointment I had the cardiologist’s office calling me to set up an immediate appointment (they are typically on a 6 month wait, 3 months for the urgent kids). what apparently transpired is that the cardio’s notes for us to follow up with him within a few weeks were NEVER put into Kendall’s chart. In essence, had I not followed the hunch I had about her labs, Kendall would never have been re-referred back to cardio, because NONE of her docs think that her PDA is a significant finding or factor in her inability to gain weight. Go ahead and go google it though, and the listing of symptoms it causes may as well be kendall’s medical chart. and in the area where “complications” are listed – paleness and sweating during eating. Go figure. God bless the American medical model.

So anyways, after the nurse profusely thanked and praised me for being such a proactive mom and calling THEM, we have an appointment set up for Tuesday morning with the cardio, then a follow-up EKG and echocardiogram, then our regular follow up with Dr. Aljadeff. It’s going to be a very long day up at LG for us, but hopefully hopefully hopefully we have some good solid direction and answers possibly. Either the PDA defect has closed up, which means that her hypotonia and Failure to Thrive (FTT) are still unspecified cause, OR – it’s still wide open, and we can start looking at that as a cause of all her issues. Just like Ben and I have been PUSHING a doctor to look at since the day we found out about her defect. Who’da thought?

So that’s where we’re at this weekend. Analyzing every catch of her breath, constantly comparing her coloring to the other girls or other babies. Laying hands on her little chest and feeling it rise and fall in it’s own little herky jerky pattern, and praying that God would hold that heart in His healing hands.

Thank you so much for all your prayers. And for all you do. I need to do a post dedicated to all the amazing things our friends and family have done for us. We would not be walking down this journey with as much strength as we have were it not for you (and the amazing food some of you can cook!   ) I am so blessed and encouraged by all the thoughtful comments and emails you send to me throughout the week.

I promise i will blog more this weekend. I have so much more to say and catch up on. Having TWO sick kiddo’s (well three if you count Karissa’s random bouts of fever and lethargy) has really zapped any small amounts of free time I may have previously fantasized about having.

if you would like to help with “Operation Restore Terra’s Sanity” – we need a babysitter Wednesday mid-morning through late afternoon. It involves taking Karissa to school, picking her up from school, and being home for Kealey getting off the bus.  At this point I am even willing to pay money for this craziness. Kendall will be with me still, so its just the two middle munchkins, otherwise referred to as “Oil” and “Water” for reasons which willl become painfully obvious should you choose to accept this mission.

Ok enough iGroveling. I hope you all enjoyed this CRAZY gorgeous weather today and that you have a blessed weekend. Take lots of pictures – share them in an online album! (I need to take my own advice…)

C-ya.

T-crest out.

If you have been around our family in real life at all, you know that Kaylen is a bona fide “bubba” addict. She is rarely seen toddling around without an 8 ouncer attached to her hand and/or mouth. She is co-dependent upon the bubba’s co-hort, bobbie (a fleecy blanket with ribbon tabs on it) – and watch out if she is missing one or both of these items at naptime. Yowza.

And when they first told me that Kendall could not eat from a bottle for a while, and they were worried that she would “lose oral-motor memory and skills”, I laughed. one of my children? lose the ability, love and desire to drink from a BOTTLE???? Hardly. My deepest darkest mothering secret: Kealey drank from a bottle until she was FOUR YEARS OLD. FOUR. Karissa’s age. My lord the child could write her own name and STILL needed the bottle to function! Kaylen is, you know, still within the BALLPARK of normal at least to still have the bottle, but she shows no signs of slowing down on that addiction.

all of that to say – we are adding one more Atkinson child to the bottle addict headcount.

Today at her therapy appointment/Endoscopy, she got her first taste of the “bubba” in almost exactly 2 months to the day –and BOY was she a champ! She downed an ounce and a half before she took a “respiratory pause” – meaning she latched on to that thing and ate like it was literally going out of style – i think she knew, oh my gosh! they might take this away at any moment i better get in all i can! It was hilarious to watch her. intriguing too, to see it all happening on a video screen, watching her esophagus stay open and her airway close and thinking – how AMAZING this body is that God gives us! Her doctor and therapist were dumbfounded by how extremely well she functioned, given all the horrible diagnoses she had two months ago with regard to her oral prognosis. They had a chart hanging on the wall listing the levels of dysphageal severity (how bad you can’t swallow). Kendall was at the worst level on February 26 – Severe Dysphagia. Oral feeds were literally dangerous to her wellbeing. Today she was a level 1  – mild risk for aspiration. Never doubt that God is alive and well and answering prayers EVERY DAY of our lives! Cause I saw it happen before my eyes today!

Her doctor and therapist were SO shocked by how “beautiful” her scope looked – they kept saying, you don’t GET footage like this from an infant! So chalk one up for the NG tube – because she is so “used” to the NG tube in her nose, she couldn’t have cared less that there was a long thin CAMERA down there – she just wanted the yummy blue milk! (They have to color it so it shows up on the video screen – i cannot WAIT to see what pure food coloring comes out like in her diaper! I might take a picture of it and post it on the blog so you ALL get to share in the fun and joy!) Anyways – they were so impressed with her footage that they may submit it to a medical “you-tube” like site because it was so Oscar worthy apparently. Go Kendall! A bottle addict and a movie star! well, at least your epiglottis is…

It was almost shocking to hear the news – this baby just needs to EAT – give her a bottle! What? just like that? no more tube?

Not quite. Her stomach is still not used to taking a full feeding all at once, and given her reflux issues anyways, we have to be careful to ease her into it. She gets pretty tired because of her hypotonia, so it’s going to be a battle to get her calories into her every day. For instance, today she has only taken 10 total ounces by mouth, and she needs to be closer to 25 –30 ounces for the day. So I’ll still have a LOT of tube feeding to do. But for large chunks of time we can take that yucky tube out! I can walk around with my baby and not push a bulky pole in front of me with one foot!

It was absolutely amazing wonderful miraculous news to receive today.

And in true Kendall fashion, one problem doesn’t disappear without a new one cropping up in its place. While we were sitting there waiting for the endoscopy to being, i was rubbing her belly and noticed that it felt really, well, WEIRD. I had the therapist feel it and she noted that yes it seemed extremely odd, so we had a nurse come in and feel her. She lifted up kendall’s onesie and i about screamed out loud. It looked like she had swallowed a live wriggly octupus and it was trying to escape through her belly. SO GROSS!!! The nurse felt it was probably a bowel loop (???), and that since Kendall wasn’t screaming in pain, it probably wasn’t an emergency, but I should definitely let the doctor know about it. Of course. Cause what would a day be wtihout some RANDOM medical mystery popping up in my child?

So we called Dr. A – and he offered to let us come in and be admitted for testing, but I felt like we could probably wait till our appointment tomorrow afternoon and he can observe the dancing octupus for himself. As long as I keep her clothed that entire time and don’t have to look at her randomly grotesque belly, I should be good! gross gross gross. I will say, the octopus-like movements did seem to calm down once she pooped, and then went away completely when her belly was FULL of a bottle of milk. So who knows. Just chalk it up to yet another Kendall-ism. Maybe that’s what she has. Kendall Disease.

so anyways – all around a great day.

Thank you so much for all your prayers for today! I know they are what we needed and I know God was hearing them. So while we still have a road ahead of us to climb with this kid (namely, she needs to GAIN WEIGHT!), we are well on our way today. hopefully tomorrow we’ll be able to figure out what kind of 8 legged creature is residing in her belly without going inpatient, and then next monday the new specialist will hopefully have some more insights to shed on her situation. Till then, we just keep moving forward.

I hope you all have a very good day, and don’t forget to hug your kiddos.

terra

This day always strikes me as being possibly one of the most hopeless days in all of history. Well, for the people who were living it back in 33 AD. The day after Jesus has been crucified. The brutal emptiness and hopelessness they must have felt. Numb. Searching. Unable to probably even process their thoughts. Just knowing that something had gone horribly terribly deadly wrong.

but what they didn’t know was that NEW HOPE was just around the corner. Just one more day. We of course know that it was on the third day that He rose – we get to see that chapter of the book in hindsight. But they had no idea. And I always think, on this Saturday between Good Friday and Easter Resurrection Sunday, how very hopeless that day must have seemed. Kind of like today, the last few weeks, in my very own life. things seem, at times, just a little bit hopeless for Kendall. This medicine or that therapy seems to be not FIXING things, and she seems to be LOSING more weight, and we still have no answers. We don’t even really have a Plan B in place for finding them. We have only our hope and prayers – nothing else.

And today, in such a very real and tangible way, I was reminded how we have to KEEP LOOKING for our Hope, our Answer – not just for Kendall but for our very lives. Jesus Christ, the Great Physician, IS alive today! He is still working in the lives of His children. On Thursday a dear friend sent out a call to some of our closest friends asking them to be our “stand in the gappers” – to fast and pray and seek God’s face for an answer for Kendall on our behalf. The response was overwhelming from people who decided to take this on for themselves – people across the city, some of whom have never even met Kendall, but just felt so strongly the need to pray for our daughter. This morning, some of those who have been fasting and praying gathered in our living room to pray over Kendall together, as one body. It was so touching and emotional and just amazing – and it gave me that renewed sense of hope.

I don’t know what KENDALL’s answer will be, but I know the One who does know the answer, all the answers. I know that tomorrow can change everything – every tomorrow can. You just never know what Tomorrow holds – but you keep hoping and you keep looking and you don’t give up. You never give up.

So while we don’t have any more answers than we had last week – I am hopeful this week. I know that we will someday have the answer. And that in the meantime, my child is in the arms of the only One who can heal her and save her. The best arms possible.

Today has been a good day for her. She is still breathing very raspy. She still coughs a LOT – throughout the day and night. She had a pretty bad episode of projectile reflux vomiting yesterday morning which reduced me to tears because she just could NOT clear the puke from her nostrils or airway and was so panicky. On top of the fact that it never feels good to puke that hard anyways. I was heartbroken for her. Nothing seems to be helping that -  not the medicine, not the new formula…and i know that it’s only been less than a week. But it’s still a panicky feeling – that it seems like nothing is helping. And that no one knows what else to try.

but you know – things change around here in a matter of minutes usually.

we went to Kendall’s VitalStim therapy session on Wednesday morning, and shared with her that we were supposed to see an ENT; long story short, the head ENT at MarianJoy (where she gets therapy) is our ENT! We love him! So he is going to bypass an extra unnecessary appointment and just go right in and scope her (look at her with a camera) on Wednesday. They are looking to see if there’s a structural reason why she can’t swallow – which I guess will help us narrow down what Plan B should be with regard to trying to build up her strength to eat from a bottle or going to the G-tube surgery.

And we were able to get in with another GI specialist next Monday, and maybe he’ll be able to point us towards some more answers.Anyways- all hope is not lost. We just keep looking for tomorrow.

thank you for your prayers and thoughts and help.

love

terra

Where everything that can go wrong, seemingly does.

The appointment went about like I’d expected. She wants Kendall to try a different formula. The ridiculous part of this is that it’s just about the EXACT same formula that she’s on. It’s like saying “ should I buy Tylenol or acetaminophen?” One’s brand name and one’s generic, but except for a few MINOR recipe changes, they do the same thing. That’s the issue with her formula. I called Kendall’s dietician and confirmed with her – the results we have been seeing in Kendall the last few weeks are about what we can expect on the new formula. Namely, more bloody stools (the test was positive for blood by the way so no, it wasn’t just omnicef coloring I was seeing), more constipation, more tummy pain for Kendall. Now since I am all about clinging to ridiculously miniscule morsels of hope – there is a SLIGHT chance that the minor minor differences in formula will help some of those out. They say it takes WEEKS to clear blood out of the colon. I don’t know how much more Kendall can take of that without going totally anemic…but we’ll see what we can get a doctor to say about that in the next few days.

We are at a loss. We are both just so upset that nothing more can be done for our baby at this point. Dumbfounded.  Came home to horrible news about our already mounting medical bills – we have to pay BACK some of the money that our Flex Spending account had paid. Then Ben spilled Coke all over dinner. The girls were fighting with each other over stupid stuff. I have piles of paperwork to fill out to get these records sent to that office, and this information released to that program…and it was just a DAY here. Just a day.

So what can you do but pack up and head to Costco and try to find crazy things to make you laugh cause at least if you’re laughing you’re not crying right?

And in a way that only God can – He lifted my spirits in the form of a tray of whoopie pies from a dear friend who knocked on my door, came to give me a hug, let me cry and then said “ ok NOW we’re really going to attack this with all the prayer we can”. I keep the faith. I keep pressing on towards a goal I have no idea how to define – life – my life back, life for my child, our life as a family of 6 to truly begin…

In the infamous words of Scarlett O’Hara – “tomorrow is another day”. Let’s hope it’s not as crazy bad as this one. We have another Vitalstim session in the morning (the electrode therapy to help her muscles learn to swallow correctly), and then our Early Intervention intake assessments, where I’ll get to hear how completely behind my child is developmentally. I am SURE that won’t depress me at all. Those whoopie pies will disappear like a shot in South LA once that meeting is over I am sure.

So that’s where we are tonite. Just….here.

At least we’re not in the hospital right? (I only KIND of packed. I really tried to not be superstitious!) We’ll be ok. Kendall smiled a LOT today, and that is about all I have to hold on to for right now. Your prayers are holding us up – I know that much is true. Thank you for your prayers, your emails, the encouragments in all forms and food groups. Maybe we’ll get our answers next week. Or the week after that. Till then we just hold on and keep the faith.

T

It is early morning on Tuesday, and I have thus far only had to prepare breakfast for one member of the family – Max the dog.

The girls are at my mom’s house having spent last nite so that Ben and I could go to Kendall’s big GI appt. today. It is strangely relaxing to be sitting here, contemplating all that I COULD do in the next couple hours, and knowing that most likely I will not do any of it. I should make some coffee; and then the thought strikes me “why not go GET some coffee???” I mean, the thought of only having to load up the baby to run through the DD drive thru is actually making me giddy with excitement. What a sad sad life! But in actuality, I am simply trying to distract myself from thoughts of what today’s appointment could mean.

I haven’t blogged all week because it’s actually been a pretty tough week. My thoughts have been all over a roller coaster, up and down and back and forth – and my mind and heart have been racing with thoughts of nothing else but trying to keep kendall from crashing. All of her doctors left the country on spring break last week, and I was left with a baby with pneumonia who desperately needs a GI to look at her, a few meds to administer via NG tube, and a whole lot of questions with no answers. I know part of the stress was my own fault. Dr. A wanted to either transfer her right to Children’s last Saturday when he discharged, or admit her on Tuesday from his office because she was still fighting the pneumonia so bad – but I felt comfortable caring for her at home vs. another never-ending inpatient stay with too many pokes and prods and not enough actual data coming back in to HELP her. Maybe I should have let him put her in. I actually reached a peak panic-mode on Thursday night/Friday morning where I was THIS CLOSE to just driving her up to Children’s of Milwaukee (known in the “reflux” baby arena to be one of the nation’s top centers) and praying that a doctor would listen to me. A good friend actually went so far as to call a doctor he knows who has connections at that hospital to see what could be done for Kendall. Just talking it out and praying with some good friends put my heart at a place of peace and I was able to form a more logical plan. I am not sure if it was overblown mommy instinct coupled with an insane lack of good sleep, a spiritual attack of some kind designed to wound my spirit, or a combo of all of the above – but it was not fun. I am not a huge fan of anti-depressant drugs – but I would have gladly swallowed a handful of them that morning if someone had given me the opportunity. i was just SO WORRIED for her.

Part of the issue was that we KNEW coming out of the hospital last Saturday that there was clearly something going on in her GI tract between the crazy X-rays, her horrific abdominal distention and cramping, and just the pained crying. So on Tuesday, after hearing how bad her lungs sounded still and knowing that he was leaving the country for two weeks and she wasn’t getting in with the GI for another week, Dr. A started her on omnicef to keep any further infections at bay, just as a stabilizing factor for Kendall. One of the bad side effects of Omnicef is that your poop turns this crazy shade of red that is eerily similar to the color of blood. One of the signs that something has gone wrong with your GI tract (specifically the 2 or 3 things that they were evaluating Kendall for last weekend) is bloody stool. Now, I have had a kid or two on Omnicef a few times before. And i have always known – oh! that’s an omnicef-diaper! But I didn’t know that with Kendall. It just wasn’t NORMAL. So on TOP of the moaning in pain all nite, and on TOP of her not sleeping cause she could hardly breathe, and on TOP of knowing that she had pneumonia that could collapse her lungs at any minute, now I got to add in the stress of worrying whether her intestines were dying or if she was just reacting to the antibiotic. I just wish it was an EASY kind of worry with this kid. Like, “hmmm, is this just a cold or does she possibly have an ear infection?” THOSE are the kind of questions I would have no problem asking myself over and over and over again. Cause I can live with the results for a few days either way. Intestinal bleeding? collapsing lungs? These are questions better left to extremely educated doctors. And yet there was no one around who knew all of Kendall’s history who could help us out. So we had to buckle down and weather the long week together, all of us, as a family.

And we made it till today, where she will go see her newest doctor, a GastroIntestinal specialist named Dr. N.

I have no idea what she will see in Kendall. I am torn between wanting her to SEE immediately what’s wrong, and send us for immediate help and fixing the problem and getting us home and back to being a normal family ASAP, and then not wanting to miss out on this week – Kealey’s spring break, a trip to the zoo, another EI intake meeting (since we had to reschedule her last one for a hospitalization!), and Easter Sunday. I want Dr. N to hear me that this isn’t just some superficial issue like a formula change or possibly a tweak in the amount of her medicine – no, there is SOMETHING in Kendall’s system that is either using up all her calories or not allowing them to be absorbed or processed correctly. And until we find and fix THAT – nothing else is going to amount to a hill of beans. No therapy is going to help, no formula thickeners or electrodes stuck to her throat or breathing treatments 6 times a day will make her HEALTHY and THRIVING like every child deserves to do. So I am torn.

I desperately do not want another inpatient hospital stay with lots of pokes and prods into my baby who is already dealing with pain I can only imagine living through…and yet I know we need ANSWERS for her, and the only through this battle is, well, THROUGH it. Right into the thick of pokes and prods and tests and procedures and possibly even some surgeries. And I don’t know WHY God put this path before Kendall, but I know it is hers to go down for right now, so I’ll gather up whatever strength I have left and I’ll carry her down it.

I hate this feeling of the unknown though. Like – will I be at home or in a hospital tonite? Should I pre-pack my bags as a kind of lucky charm against NOT going into the hospital tonite and instead waiting for some other better time frame? Kind of like Murphy’s Law in reverse “If I am prepared to go to the hospital, we will not get sent. If I DON’T prepare for it, she’ll send us”. These are the crazy stretches to which my mind has gone – packing suitcases as a means of medical therapy. I want so desperately for the doctor to HEAR me, that Kendall needs help and she needs it NOW, and yet- I don’t want her to hear me TOO much. Like, next Monday would be ok. Give me something to keep her happy/breathing/alive in the meantime and we’ll see you next Monday to get down to business.

but then I fear – what if she doesn’t hear me at all? From all accounts this is one of the few REALLY GOOD GI specialists in the Chicago area. If even SHE can’t figure out my kid, where else do we go? Do we pack up and go to Milwaukee? What about the other girls? And then, you can clearly see where my mind would just run off the cliffs of Insanity (name that movie!), trying to put into place Plans that may or may not need to be made. i am having a very hard time taking it one day at a time because there is no guarantee of anything these days.

I do know this – having snow on the ground in the second week of April is NOT helping matters in the LEAST.  If it would just be SPRING around here already!

So that’s our update for the week. Lots of questions, no answers, and even less sleep.

If you’re reading this before 1:00 pm central time, please pray for our appointment. Pray for Dr. N to HEAR our concerns, and to use her expertise and knowledge to make the best possible decision for Kendall’s care, testing and treatment. someone last week prayed with me that Jesus would be sitting in that room with us – and the visual I got of that just brought tears to my eyes. I know He is just as concerned for her as we are; she is HIS child too. And i pray that He would direct the conversation, having us give the right info and having the dr. ask the right questions. Pray that if we DO have to go the hospital, that all the other crazy details of life would be able to smoothly be worked out. He has always been faithful in this and I know He would be again, but that still doesn’t mean that my mommy mind is at EASE with all the upheaval. Please pray that this appointment today would LIFT our spirits, instead of crushing them with despair.

I’ll update later tonite – either from home or the hospital!

Have a beautiful Tuesday -

terra