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Nov. 7th, 2010


Sorry I haven't updated. We ended up having to pull Lily's line, get a new one, then she came home. Then got pneumonia. She's all better now though!

I've been having a rough time this month. Auri is 4 1/2 months old. The same age Lily was when she got sick. I teeter from feeling guilty that I'm happy that Auri isn't like Lily and therefore Lily must not be good enough, to being completely panicked with fear that something is going to happen to Auri, simply because she's 4 1/2 months old now. Lily was 20 weeks old exactly when her injury happened. Auri was exactly 20 weeks old last night.

Auri is a very very happy baby. Even when she's hungry, she really only kind of squeals, never cries. She's in the middle of getting two teeth on bottom and still hasn't cried. Just doesn't want to eat.
Except yesterday. She was getting mad that I wouldn't let her eat the crackers I was eating. So I let her chew on one. She was in absolute heaven. But when it got soggy and she was actually getting bits in her mouth, I took it away. She THREW herself backwards and started sobbing and screaming. Would not calm down. I finally got her to calm down and she fell asleep. For the rest of the night though, she would start crying and just wouldn't stop. It was breaking my heart to see her so upset and making me go into a panic attack. I was trying to stay calm, but I was also trying not to convince myself she was dying before our eyes and we needed to rush her to the hospital to keep her from having a massive brain injury.

I gave her some motrin and put oragel on her gums and nursed her to sleep while fighting back the tears (thank you Ativan). I stayed awake most of the night, just watching her breathe and making sure she didn't have a fever or didn't start seizing. I'm exhausted, which is only making me more sad/depressed about it all.

I wish I could be just completely enjoying Auri being a baby. This newborn-1 years old is my absolute favorite time with kids and I'm so tense and scared this time. I feel like if I let her out of my sight, she's going to stop breathing like Lily did. Logically, I know it's not true, but that doesn't help me at all.

Lily update


Lily is doing tremendously better. Still sick and will be in the hospital for at least several more days, but is much much better.

She was in medical shock most of the day Saturday and some of the day Sunday. Heart rate of 180's-200+, fever between 102-106, respiration's of 28-35+, completely awful blood pressures (like, one on Saturday was 77/25).

Her CVL (the IV cath she has that goes into her heart) grew yeast, which really really sucks. It's hard as hell to get rid of and most of the time, growing yeast is an automatic line removal. Which also sucks really bad. Really bad.

- Lily is TPN dependent. She gets an insignificant amount of calories and hydration though her GJ tube. Most days, nothing. Some days, only up to 200 mls, which is only, at most, 130 calories. So, nothing that could ever sustain her. She would get severely dehydrated and start dropping weight again if she wasnt' on the TPN. She is unable to currently survive without it.
- Her TPN, as is currently is, cannot be run through a normal IV. In order to run it through a normal IV, everything in it would have to be changed. Even then, TPN is bad on veins and she would quickly blow any normal IV it would run though. She has very few veins, so after blowing a couple, they'd be out of spots. That would take probably a week, at the absolute most.
- They cannot put a new CVL in until they get a solid 48-72 hour culture that does NOT grow yeast. And if we didn't want the new line in some weird spot, we would also have to wait for the old spot to heal up. Which could be weeks. Even then, that vein is very likely done for completely if they have to pull her CVL.
- A port isn't an option at all with her. A PICC is, but I really don't want to bring her home on a PICC, then have to go back in for surgery again later. Especially because the PICC would likely end up ruining her only good arm vein.

The bad thing about not pulling it and just using the antifungals is that yeast attaches itself to anything it can. Intestinal walls, organs, and especially things like the plastic cath that the CVL is made of. Even if we clear the yeast from her blood and get clear cultures, it can stay attached to the CVL and she could end up with another infection as soon as she's off the antifungals.

We have a meeting with her Dr's tomorrow to discuss the pro's and con's of both. My main question for them is, "If we don't pull the line and she gets clear cultures, what are the actual chances of her getting a recurrence that isn't actually a brand new infection?"
I mean, if it's only 5%, then it's obviously not worth it to pull the line. If it's 70%, then we'd pull the line.

I hate making decisions.

Sep. 12th, 2010


Lily is in the PICU with a suspected line infection. She was very sick this morning, like really worrying sick, but she's stabilizing now and will hopefully be home in 5ish days or so. I've been cleaning most of the day, playing facebook games, and just trying to keep my mind off not being there with her. I am always the one that's there for her, but since we now have Auri, that's not possible anymore.

It's been really tough for me not to be there. Every time I would make a sudden noise, I'd glance over to where Lily lays, since usually noise makes her seizure. I've been fighting back being upset about it all day, but it kind of just came tumbling out when I went to take a bath and her bed was just..empty. I want her home. I want her back here, with me, and I want to snuggle her.
I just sat in the tub and cried for a bit. It would be really great to be able to just knock a few back or take a couple pills to help ease it all, like I used to be able to, but this whole 'being an adult' thing keeps preventing that. I'll just go snuggle Auri and call Lily in the morning to chat with her.

Every time she goes into the hospital like this, I know that's just one step closer to her never coming home and that terrifies me. Just the thought of her not being here makes everything in me hurt and throb. Ugh, I'm tearing up again.

I went through my archives and looked at the 9 month and 12 month photos I did of her and the other kids. First off, my lord, I sucked. LOL. Looking at all those helped me feel a lot better though. I found my post of her first smile, post-injury. That was such a wonderful day. Her laugh still brings so much joy to our whole house. We'll all gather around her, trying to make her laugh. Coy will make silly faces and dance in a circle. Max roars like a dinosaur for her. Dakota sings her songs. It's really awesome.
We all love her SO so much and want many more years with her.

People tell me all the time that I'm so strong. I don't feel very strong right now. I just want someone to hold me and tell me that everything will be OK, even though I know that's not true. That stopped being true on March 17th, 2007.

May. 5th, 2010


See, I say it'll be like a week until I update and it ends up being nearly two months. I'm hopeless.

I love being pregnant. There is very little that is more amazing and wonderful to me in this world than being pregnant. Feeling the movements, watching your belly get contorted by the gymnastics the baby is doing, knowing that you're going to have a new baby, and so on. It's just awesome.

However...I'm in a lot of pain and it sucks. None of my normal daily meds are pregnancy safe (all at least class C), so I've been living off of 1500mg of tylenol, every 4-6 hours, for the last 30 weeks. I haven't taken tylenol for pain relief in years, because it's so useless.
I've been taking multiple hot baths daily; just to try to relieve pain for only 15-20 minutes at the most. Anything to give me any relief. I use arm crutches on the more rough days and we've shortened any public trips so I don't have to walk as much. I've used the wheelchair carts in stores as much as I can, but it's pretty much impossible to hold Lily (especially in her stupid hip brace) while trying to steer one of those, so I haven't been able to as much as I need to.
It takes several minutes for me to even turn over in the middle of the night, due to the searing pelvic/hip pain. When I finally do get from one side to the other and relax, I can HEAR my hip grind downwards, only partially into place. After having the triplets, I was left with almost a two inch separation where my pelvis comes together in the middle. I can pretty much bet it's more than two inches right now.
It hurts to sit, to lay down, to move, to walk, to do anything. I'm in so so much pain.

I wish I could say that I can't wait till the pregnancy is over so I'll be out of pain, but I know it will linger for at least 6-12 months, just like it did last time, and it will never fully go away. My pain gets progressively worse after anything is done to my body and it can't go back to how it was before. Plus, I can only take one of my normal meds after birth and not as often or as much as I did before (since it would make for a super sleepy baby).

I also wish there was something that helped me. I can't do chiro's (and it doesn't help anyway) because of my joint disorder, massage doesn't help, I won't do acupuncture (*shudder*), and I've pretty much tried everything else. I hate chronic pain.


Anyway, enough complaining.

I've got a 'feeling' that something isn't typical with this baby. I don't know if I'm scared of something being wrong because of our experiences already or if something actually is. I have recurring dreams of the baby being born and she has Down Syndrome. Not something I would have a hard time dealing with (Jeremy would though, simply because he is already terrified of having another SN child), but it's still something. I've had enough of these dreams and feelings that I think I will be a little surprised if the baby doesn't actually have Down Syndrome. And no, I've not shared these feelings/dreams with Jeremy and don't plan to until after she's born and she's either typical or not.

Because of these feelings and my paranoia, we've had two ultrasounds (no other testing and wouldn't have ever gotten anything else anyway) to make sure there are no birth defects that would cause a need for a NICU, surgery, or something like that immediately following birth. Everything looks fine, except I have this funky scar tissue that is normally only seen in women who get pregnant right after D&C's or abortions. In the last ultrasound, they were looking at it closer to make sure it was just this scar tissue and not amniotic band syndrome (one of my massive pregnancy fears and it's also more common in women with my joint disease). Of course, the tech can't actually tell you anything, so I have to wait for the Dr report. There are no missing fingers or limbs though, that they can see, so I'm going to pretty much assume that even if it is ABS, it's so so very mild that it's not causing issues for the baby, which would be my only concern.

I'm currently 34 weeks pregnant. That's just amazing to me. It feels like yesterday that I got pregnant and here I am, almost going to have a newborn. It's going by way too fast.
I have everything I could possibly need, and more (cause what does a tiny baby really NEED, yk?), so I'm set as far as the baby goes. It's just every else that's making me panic. I need to rearrange our room so Lily's medical supplies and equipment aren't taking up the majority of it, I need to install the carseat now because there's no way I'm doing that in another 4-5 weeks when I probably won't even be mobile, I need to clean the house, get more hangers, put away the winter clothing, build my garden beds, get dirt for my beds, finish getting my seedlings started (I'm already 3 weeks late on that), I need to clean my office completely, donate a bunch of stuff, and so on. My list is getting longer as my time is getting shorter. Everyone is telling me to chill and I can do a lot of this later, but I know it won't happen. Jeremy is too busy, so I have to do 99% of this on my own. None of this will ever get done if I don't do it NOW, while I don't have a newborn to take care of. It's very overwhelming and frustrating to me.


Off of me, onto the kids:

We have had a really shitty time recently with Lily. Slight (as slight as any story regarding Lily can be) backstory here, for those who don't follow her closely:

Lily's gut has progressively shut down since her injury (4 1/2 months old). It started with just not being able to tolerate large amounts in her stomach at a time. Like, the boys would be drinking 4-5 oz bottles and she could only get fed (via g-tube) 2-3. Even then, she would puke if she laid down on her back, stomach, or if you really just moved her after feeding her. Then we had to slow down her feed to over about 1 1/2 hours. Then we had to put it at only 2 oz, at the most. Then 1 1/2 oz. Then 1 oz. Then a constant feed over about 12 hours, then 18, then 24. Eventually, we got to where we were giving her about 2 1/2 teaspoons an hour into her stomach and she was STILL puking it up. So we switched to a GJ-tube, where she gets fed directly into her small intestine and bypass her stomach all together.

That worked well for about a month, we were able to feed her about 50-60 ml's an hour (2 oz). Then she had her first hip surgery, which just made everything go downhill very quickly. She started vomiting massive amounts of bile every few minutes, all day and night. Ended up with an ulcer from the pain medication, so then was puking blood. Got that fixed with an internal glue type medication, but that made things even worse. She puked loads of bile about every 5 minutes for almost 6 months. We got the puking down to only a few times a day, but she'd ruined her teeth by that point. The back ones are brown and black and the front ones have brown lines all over them.
By that time, we were having to drain her stomach constantly into a drainage bag and she was only getting 40ml's an hour (slightly over an oz) into her intestines, but it was also slightly diluted with water now.

We switched to a high calorie formula, since she was losing so much weight (she was 33 lbs at the time of surgery), so it was 45 calories an oz instead of 30.
That worked for a couple of weeks, but we kept having to lower her feeding rate or dilute the formula more and more. Before this last hip surgery, she was at 50/50 dilution and only 35 ml an hour, but only for 12-15 hours a day. Any more than that on any of those things and she'd start a vomiting cycle. She actually pukes bile mixed with formula, which means that her intestines are backing up formula into her stomach.

After this surgery (which I'll talk about in a second), we had to drop off to 30ml an hour, but nothing less than that. Then she got a line infection (which I'll also talk about in a second) and put on the antibiotics. She started the vomiting every 5 minute thing again, so we took her off feeds completely. I very slowly started them back up, but cannot get her past 20ml's an hour (two teaspoons less than an oz) and she's still 50/50 with the dilution. I can also only give her about 10-12 hours a day on the pump. This puts her at only getting about 200-240ml's of formula/liquid into her gut daily. Because of the dilution, it's only, at most, 180 calories a day.

She had gotten down to barely 22 lbs after this last surgery, before starting the TPN. So an 11 lb weight loss in a year. She'd started getting bad bruises on her spine, elbows, and tail bone from how much less fat there was to protect her.

Ok, backstory over. A little while back, I had posted about Lily's hip re-dislocating, even with the hardware in that they put in last year. The surgeon wanted to redo the first surgery (breaking both femurs, cutting out a triangle wedge, angling the legs outwards, and screwing them into place). She would've needed to be in another body cast for at least 6 weeks, like last time, and would have the same pain issues she had last time as well. I basically said, fuck no, and told her to come up with something else. We finally chose to take the hardware out (plates and screws), try to place her hip back in socket, and do a left leg tendon release to try to keep her leg in socket. Then she is to wear a leg/hip brace all the time. I agreed to this only with the surgeons agreement that they would really take care of her pain this time, since they fucked up so bad last time with that.

She agreed. And she lied. Less than two weeks of pain medicine isn't 'taking care of it' when Lily was on narcotics for over 8 months last time and STILL had pain.

Thankfully, I finally was able to get a palliative care team through Lily's hospice program here (long term hospice, not 'dying hospice') and the Dr there is managing her pain wonderfully. She gets as much oxycodone as she needs, without me having to spend hours on the phone and at appts, arguing for it.
We still can't straighten her left leg though, it's still not in socket, and it's still painful for her. Because we can't straighten it, she can't use her stander. Because she can't use her stander, she won't use her switches. Which means she gets to do pretty much nothing. She can't play with her toys, can't 'talk' to us, nothing. I'm so mad at this surgeon. Lily didn't have any hip pain or problems before the first surgery.

During the hip surgery (March 17th), Lily also had a central line placed to start TPN (IV food), since she can no longer tolerate enough calories to sustain her via GJ tube.
It's a catheter that's tunneled under her skin, comes out of her chest, and goes into the top of her heart.

On March 23rd, she was readmitted to the hospital for an infection in her line (Staph Aureas), which was likely 'put' there during surgery (where the majority of all infections happen). She was inpatient for 5 days, when I finally convinced them to let us go home, since they were doing the same shit I could do. She was on IV fluids and antibiotics for 14 days total and was not fed via GJ-tube for almost all of that time and nearly a week afterwards.

Just 16 days after coming home from the hospital, we had to go to the ER because the cultures from her line were growing something else. Sat in the ER for a looong time, got more blood drawn from her line, got the antibiotics, and finally got home again. That one turned out not to be a real infection, just a contaminant.

She has had two yeast infections since the 23rd, horrible horrible diarrhea (which is saying a lot since she always has diarrhea), and very little gut function. Most days, I can hardly get her gut to tollerate pedialyte, let alone any actual formula. Thankfully, her liver still is looking great, so we're not too worried right now. Just frustrated.


The other kids are doing great/crazy. Dakota is finished with her kindergarten stuff already (has been for about a month) and we'll get her 1st grade stuff in a couple of weeks to start. She is so very smart, amazing, and hilarious. She's also been incredibly difficult lately. Going anywhere with her is a massive headache, even putting her in the car is a fight recently. Getting her to do anything helpful around the house (or even just NOT doing destructive things) is impossible. She's kicking, hitting, spitting, screaming, throwing things, and just being completely nasty. Therapists have no suggestions outside from what we're already doing with her. It's just a totally unfun phase where she's in the middle of trying to be older and independent, but not yet emotionally mature enough to be.
She's right around 2 1/2 - 3 1/2, emotionally, but has the 6 year old grown up attitude. It's really tough.

Coy is so much fun. He has started creating actual pictures in drawings, instead of just scribbles or shapes. He makes little monsters, people, animals, and families. His stuff is SO cute, I've thought of putting some of it on tshirts. He's super verbal, which is SO much fun. Tells jokes that make so sense, has full conversations with me, and so on. He's also totally lazy and manipulates Max and Dakota into doing things for him. It's hilarious.

Max is a complete dinosaur FREAK. He knows practically everything there is to know about them and recites facts about what certain ones eat, what period they lived in, and so on. It's really neat (and quite annoying when he asks me questions about them and chastises me when I get it wrong). We're still having a tough time with him not being able to play on his own and taking things from other people, so he can have fun like they are. I doubt that will stop for several more years, at least, though.

Jeremy is insane. There's not many other ways to describe him. Workaholic might work too. He is still a full time student at college, but is also the regional vice president of the honor society he's in, leader of the film festival, treasurer of the student government, and is campaigning to be on the international team of the honor society. He also goes bowling every Thursday night (the majority of the time anyway) and frequently goes out of town or state for honor society things. He was in Floria for a week last month, was out of town two days in March, one day (so far) this month, and will be out of town for the 22nd and 23rd of this month. He has several more out of town or state trips planned for the next 6 months too.
He does all of this stuff, then complains when he's behind on homework or overwhelmed. He also complains that I ask him to help out too much. Because switching the laundry, unloading the dishwasher, and helping me feed the kids dinner/put them to bed is a lot. *eye roll*.
He will have 3 associates and a bachelor degree super soon. He wants to get his masters and eventually a phD as well. I'm trying to persuade him against the phD, but I never win when it comes to this kind of stuff, so we'll see.


Back onto me!
I have a midwife this time for this birth. I was planning a UC last time, until we discovered I was having a litter, and I did UP until 32 weeks and still continued with what I was doing prior to hiring the midwives.
I considered another UC this time, but my personal fear is too much that I don't feel comfortable with it any more. Not fear of birth or anything like that, just fear of something going wrong with the baby and having another severely brain damaged child and it being my fault. My midwife is super hands off and knows that I really don't want much from her though. I want her to leave me alone, only bug me when I need her to (or to check heart tones), and absolutely do NOT pray over me like a midwife did last time.

I've already got my birth tub and little kit put together. A benefit of having a kiddo like Lily is all the equipment we have at the house, should we need it. Plenty of oxygen, a heart rate and oxygen saturation's monitor (and I have a newborn sized toe lead for it), ambu-bag, suction machine (should there be any need to do that), and other stuff like that. Things that we likely will not use, but put me at a little bit more ease for the newborn-up to 6 months period.
I'm really hoping for a fat little newborn this time. 7 1/2+ lbs would just thrill me. I want rolls on a baby this time! I've had 4 skinny little chicken leg babies, I need a chubby one.

Plus, plus, one of the absolute BEST parts of this birth? An amazing photographer and one of my bestest friends, babyslime , is coming down from Canada to photograph my birth and chill with us for a while!
I'm so incredibly excited and I BETTER NOT go into labor before she can come. It would be perfect if I went right to 40 weeks or a day or so after, but not before and not much after. I will do everything in my power to make sure I keep this kid in until she can fly down here, lol.

Ok, well Lily's PT is about to be here, so I'm done for now. :D

The best smile in the world


I suck at updating. I keep saying 'I'll do that later' and then later just never comes. I really will update though, it just might not be for another week. lol

In the mean time, I present the best smile EVER:

Annoyed with me because I hadn't picked her up:

-1w

-10w


But she decides it's ok when I start making funny noises for her:

-2w


Getting pretty funny now:

-5w


And then, the BEST SMILE EVER:

-6w


Then it just gets too funny for her to handle with her cute little smile and she breaks out the open mouth squeal:

-7w

Dec. 29th, 2009


I'm getting really bad at updating anything lately. I'm not really enjoying this pregnancy as much as I did the other two. Not sure why. I'm just not that into it yet, I don't feel all super excited like I did before. Hesitant to be happy in case something goes wrong? I don't know. I'm already 16 weeks, which is just way crazy to me.

We've moved, again. Just like 12 minutes south of where we were, into a bigger house. I've had a bit less pain in this house as well, due to this house actually having insulation.
Only have needed to take my rescue showers every other day or sometimes every day instead of multiple times a day. I'm dying not being able to take any of my pain meds though. Tylenol is bullshit, fyi.

Lily has her VNS implant surgery on the 6th. Pre-op on the 4th. I'm really really hoping that week will be kind to us and not snow a bunch.
Lily is doing good, but crappy. In the past year, she has lost a lb, but grown about 3 inches.
She went from about 70th percentile in weight, 5th for height to less than 3rd for weight and 13th for height. I typically don't care about percentiles at all (I don't even think Dakota's on the charts), but she's starting to look thin. However, she's like 30% for weight on the chart for kids with CP. It's just gotten so hard to get her calories into her every day. Her gut just isn't kind to her at all. She's on 1.5 calorie formula right now, but we still have to dilute it 50% with water to get her to be able to tolerate it at all. Even with it diluted, she can only handle about 30ml an hour. Any more and she starts puking. Any less diluted and she starts puking. With the dilution and the rate, IF she were fed all 24 hours of every day, she would only get half the calories she's supposed to get on a daily basis. And she's never hooked up for all 24 hours because she starts retching or her therapists come or something. It's just so frustrating. :(



I did a fun newborn session this morning. Poor little baby was jaundice, so was under the lights for a bit, along with the little sliced up heels. He's all done with them though, so yay! His big sister is a hoot and the whole family is just great. Absolutely beautiful Victorian home, kept in amazing condition.
I'll share a few pics from it, then put the kids to bed. I'll eventually be able to come back on and talk about everything else in life.

-2

-4

-3

-1

Dec. 17th, 2009


Long overdue photo of my amazing little family. I'm so very thrilled with the photo. Lily's face doesn't show in this one, but I have another I'm editing that you can see her face in. I'll get it and some others up super soon.

Family - 2009

Lily


Ok, this is kind of a two-part post, since I wrote it on two different days. I just copied this from Lily's page, so many of y'all might have already read it all.

Day one:

I know it's been a while, sorry.

Lily is doing alright. She's currently not feeling well, but I'll get into that in a bit.
First, YAY!, her wheelchair will be here in a few weeks! I'm very excited and I bet I'll love it far more than she ever does, haha.
She will now have a pink stander, a pink chair, and a pink wheelchair. :)

Lily has an appt with neurosurger​y this afternoon to measure her chest for the VNS implant and discuss it further. Hopefully she's big enough and they will agree to surgery for it. It has a 50% chance of reducing her seizures by about 50%, so it's a fairly good shot, particularl​y cause it's our only chance.

We've been using a new seizure medication for Lennox-Gast​aut patients recently, called Banzel. It seems to be working a tiny tiny bit. She normally has 1-2 of these odd tonic-cloni​c seizures a day and we haven't seen any of those for the past several days. All of her others have pretty much stayed the same, but even getting rid of a few is amazing! We've never had any success with any of the many medications we've tried before.

She's currently feeling icky because her gut has shut down, again. Her feeds are SO slow and still backing up. She's puking up thick bile, writhing in pain, and just so unhappy. We seem to have about 4-5 good gut days, then 2 bad gut days. I don't understand this, her GI doesn't understand this. We go back to see him this Wednesday, so we'll see what he suggests.

I'm up to take my CNA state test this next Monday. I haven't really told many people because I'm terrified to fail it. Everyone says I'll do fine, but we'll see. A friend is taking it today, so I'm going to call her this evening and grill her on how it went and if she passed. The center I'm testing at has a 80% pass rate vs the local one that only has a 50% (!!) pass rate. Nicer testing nurses at the one I'm going to, I guess.
As soon as I pass, I can become Lily's CNA. I'm quite excited about this, but still very anxious.

Therapy for Lily is going pretty well. Since her hip pain has decreased, she's been enjoying 'working' again. When her PT, Bruna, arrives, she just smiles and giggles. I've never seen a child love their physical therapist so much before.

I'll update again tomorrow about what the neurosurgeo​n says.


The update, day two:

Sorry for not updating, I was a little upset after the appt.

It didn't go as planned and I'm peeved. When we talked to her neuro about the VNS a year ago, he said it was a sure thing, she just wasn't big enough yet (almost 2 at the time). He said all we had to to was wait until she was big enough, see the surgeon, and schedule the surgery. So, when I made the appt for the NS, that's what I expected.
I did NOT expect him to be a douche nozzle (sor​ry, still upset).
He was very patronizing and corrected me over stupid things (like pronouncing Abscense wrong) and laughed at me a few times.

Anyway, aside from his asshattery, he was not willing to go ahead with the VNS without more testing, which I think is silly. He is making us meet with the epilepsy team at the children's hospital to see what THEY think is a good thing to do vs what I and her neurologist think is a good idea.
Don't get me wrong, I have no problem seeing this team and I wish I had known they existed a long time ago because I would've gone when we first moved here. It was just the way he said we needed to do it. Like he was almost accusing me of making things up or making them sound worse than they really are, and he needs confirmatio​n from this specialized team that I'm right.

He also suggested trying to find what parts of her brain aren't working right and taking them out instead of doing the VNS. That's a good idea, BUT, I suggested that to her neuro in Austin 2 years ago and he said it wasn't an option due to the types of seizures she had. I told this guy that and he just laughed at me. WTF?

He also was very snotty about my issues (brain/spin​al) and Dakota's as well (spinal). Unfortunate​ly, he's the only VNS guy there and I'm not willing to take her to a non Children's Hospital. He is a great surgeon, so I would trust him to do it, but he's just an ass.


We also saw her GI again and that was uneventful. She's not gained a single bit of weight since the last appt, but she's also not lost, so YAY. We were not happy about the no gain, but were very happy about the no loss.
We decided to try a 1.5 calorie formula to try to boost the calories a little bit. That does mean we will have to watch her kidney function though.

He, again, suggested a medicine that I wasn't sure about and I said I would look into it further. It has been taken off US markets (which I'm ok with, depending on reason. I'v​e used meds in the past that have been) and is called Cisapride (Propulsid). If anyone has used this or has a child on it, please e-mail me with your experience at jmathisfami​ly@gmail.co​m
We have tried all the US meds to help her motility and nothing is working, so we're stuck between a rock and hard place right now.


Oh, but this is good and fun to watch! I got Lily a new toy and she LOVES it. http://www.​youtube.com​/watch?v=uX​GkWS5nUPI
It only works when she's pushing her switch, so that can show you a little bit of how much she was having fun, since she kept holding the switch down so much.



Then today, the NS calls and leaves a message that he would be happy to review MY mri's to see if there was anything he could do to help me. That's nice and all, but he wouldn't even acknowledge that EDS can cause issues when it comes to Chiari. Not someone I want cutting into my brain.
I really hate when Dr's treat me like crap. Brings back all the memories of childhood when all the dr's told me I was making everything up. Now I know I was right all along, but that feeling still comes back when I get an asshole of a dr. I felt like just crying when I got home, but just got pissed instead.

Aug. 23rd, 2009


Tons and tons of pics under the cut . Like, really, TONS.

Tx TripCollapse )