Thursday, May 28, 2009

May 28th

We FINALLY got Harley's equipment yesterday (feeding pump, suction machine to suck yuckies out of her mouth/nose & nebulizer for her breathing treatment) and I got (briefly) trained on them. To be honest, they aren't as difficult to work as I thought. The suction machine and her nebulizer are just air compressors (the nebulizer is EXACTLY like a little air compressor my dad has) and the feeding pump is EASIER than the hospital one, so I'm set! Los Ninos is getting everything ready for us to leave, too. They've set up her follow up appointments (cardiologist, neurologist, etc.) and for 1 more test (swallow study- to see how likely she is to aspirate [food/ drink go in her lungs] while eating). Everything's set... except her meds.

Harley has 12, yes 12 prescriptions. Only 4 are covered by insurance. Most of them are injectables (we need needles to draw them up, but ultimately they go in her G-tube) and insurance doesn't like to pay for those. So, Los Ninos is doing all they can to get them covered and to get us on more programs that can help us out. They've been really great to us at Los Ninos. The only complaint we've had about ANY of the staff there is (and I quote Cameron): "Aww, this nurse makes us wake up in the night (for Harley's meds)." And I can live with them making us be responsible! Anyway, the new 'release date' that we're shooting for is early next week.

We FINALLY got our carpets shampooed (is that how you spell shampooed?), actually Cameron rented a Rug Dr. and did it himself- he didn't know it'd be that much work! We threw out a couch to make room for Harley's crib in the living room and now we're just looking for a tall table to put her meds on when we're getting them all together. In the meantime we'll just use a TV tray. Our house is close to being ready!

Monday, May 25, 2009

May 25th

We just got moved to Los Ninos Thursday and they're already trying to discharge us tomorrow! We haven't even gotten our equipment for her yet! I won't let them discharge us until I feel 100% comfortable on all her equipment. I think it's more or less the insurance discharging us than the place itself. Oh well, though, you gotta roll with the puches, right?

Other than that, Harley is doing great! She stopped throwing up, at least for a few days now (we think it was because of her medicine Clinazapan [probably didn't spell that right, but I tried], it was a pill that dissolved under her tongue and once we started disolving it in water and giving it through her G-tube [which was 'okayed' through the doctors] she stopped throwing up, it seems). Also, we FINALLY had her re-evaluated by the speech therapist at Los Ninos and they confirmed that she CAN swallow! We can now give her ice chips (even though she didn't like cold things before this, but maybe she'll give in a little since the only other thing that goes in her mouth is a toothbrush). It's a small step, but an important one showing that she's improving towards being able to eat (or at least drink her formula from a bottle)! How exciting is that!?!?

I know this is going to be extremely hard caring for Harley at home now, but she'll appreciate being in a familiar environment and being able to just relax. We're in the process of setting up our house for her (moving her crib into the family room, getting rid of all the clothes that are too small for her that we started to do, but got lazy and stopped, and also get rid of some toys of her's- we're not mean, she just has AAAAALLLLLLLLLLOOOOOOOTTTTT of them!) so it'll be move convenient for us to take care of her, and so she can hang out with us instead of lock herself up in her room! (Lol!)

But seriously, it'll be nice once we're all home. I know it will be alot of exhausting, never-ending work, but who said being a parent was easy? I'm not a hero like firefighters, police officers, military men & women, doctors, nurses, etc. I don't have an extrodinarily big heart like Mother Theresa. I don't have patience like a saint (if you know me at all I've probably blown up on you- I'm that bad sometimes!). I'm just being 'Mom'. I see my baby girl needs me so I do what I can. I can't perform a miracle to make her brain grow back so she can walk and talk and play like normal again (though we all wish we could), so instead I am her advocate. I look into her eyes, almost straight to her soul. I see if she's mad, I listen if she swallows (when everyone else says she can't), I talk to her and hold her and find out what she wants (as best I can) and I let everyone know. It's the only thing I can really do for her (besides research everything until I stumble upon something helpful and find out the doctors are 1 step ahead of me), so I'm going to do it!

Thursday, May 21, 2009


We've been expecting the hospital to release Harley since Monday. So far, they still haven't. Tuesday they told us Wednesday, Wednesday they were waiting on a lab result, Wednesday night the Nurologists had the say so. Would have been nice if they let the Neurologists know earlier in the week instead of last minute! We moved all our junk out of the hospital and back to the house, at least and got ALLOT of laundry done.

When she IS finally released, she'll be going to Los Ninos Hospital, 24th Street and Thomas (down the road from St. Joseph's Hospital, where she is now). It's a 15 bed independent and free-standing hospital that specializes in acute and sub-acute care for infants, children and teens. (Taken right off the website!) It's basically a place to go before you transition to home from the hospital. They will train us and make sure we are well prepared to care for Harley once we're on our own. They also have resources that will help us once we do go home. I feel confident that Harley will continue to improve once she's home, back in a familiar environment, and can relax (sort of). I'm going to make sure we still get physical therapy coming in and I'll try to get a home health agency involved, too; that will help us out even more. For now it's just patience, patience, patience while we wait to find out what's going on and to get our last minute questions answered. Thank you all for the continued prayer and support. Wish us luck and keep praying for a miracle!

UPDATE @ 3:00PM-

They are FINALLY releasing her! She'll be going over to Los Ninos Hospital for a week or two. I'll let you know how it goes!

Monday, May 18, 2009

May 18th.

So, here's the update from the weekend:

Harley started throwing up on Thursday night. Not just a little, but almost continuously, it seemed. Every time we'd clean her up and change her sheets it seemed like we'd turn around and she'd be throwing up again. We'd stop the feeds through her G-tube after she threw up, anywhere from 15 min to an hour to give her stomach a rest. As soon as we'd start it up, it seems, she'd start throwing up again. Poor baby. It went on all night, too. As soon as morning came she stopped, though, which was good because she had to get a test done on her eyes.

She's still cute, even if she has an eye patch on. She did really well with the test. We put her in a wagon and brought her to some room on the 8th floor where they put more probes on her head and 2 on her face. Then they put an eye patch on one eye and flashed a strobe light in her face (I thought people who are prone to having seizures can have one triggered by strobing lights...) at different speeds. The fastest one made me think I was going to have a seizure and I've never had one! Poor baby. They did that to both eyes then put patches on BOTH eyes and sat her in the dark for 15 minutes then did it again. The whole thing took an hour and a half! She was such a trooper, though!

Friday night she threw up more, but not as much as Thursday night. Saturday we went to the only skilled nursing facility for infants, kids and teens in Arizona. It's called Hacienda and it's about 45 minutes away from our house at (if you live in AZ and can relate) 16th Street and Baseline. It's a pretty nice place, like a hospital, but more like home, just like we've been told. It's 2 babies/kids to a room, and there's just enough room for the 2 cribs/beds and maybe a side table and chair. We can sleep in her room and they said they have cots, but it will be a tight squeeze. They also have 'Angel House' which is like a boarding house for parents. You have to go through the social worker there to book a room because space is limited. The facility is right next to a park so we could take Harley out for walks to the park whenever we wanted, too. The nurses seemed very nice and caring, the nurse who toured us told us "Never give up hope. There are children in here who aren't supposed to live who end up walking out of here!" when we explained Alpers Syndrome was fatal. That REALLY scored points with me when she said that. The atmosphere was nice, seemed kind of depressing when I walked in, but everything was explained to us and I felt MUCH better about the place by the time we walked out.

The other option would be to take her to Los Ninos Hospital (technically a 'hospital', but more like a short-term care facility to teach parents how to take care of their kids after they're released from the hospital with medical equipment, G-tubes, ect.) which is down the street from St. Joe's Hospital (where she is now) at 24th Street and Thomas. It's a small place with nice nurses. When we arrived, the nurse who was showing us around was holding this really cute little baby (maybe 4 or 5 months old) with ALOT of hair and he was just looking around and smiling at us. She said they were slow and that her and the other nurse were just feeding the babies (the other one had a little toddler girl with pigtails she was feeding). It, too was more 'homey' than the hospital and exceeded my expectations.

I think what we're going to do is take her to Los Ninos and attempt to take care of her ourselves there. If it overwhelms us, we'll take her to Hacienda, and if not, we'll take her home and attempt to get some home health agency to come in and help us out. My mother-in-law has even changed her shifts around to Fri. Sat. Sun. so that she can help out when I'm working (Mon. Tues. Wed. Thurs.) and I can cover weekends so Cameron isn't so overwhelmed. She IS a nurse, so that'll be SOME nursing assistence to get us started... : D

Saturday night was awful. Harley had 2 seizures (they apparently weaned her completely off the Atovan [for seizures] and didn't tell us, so I was TOTALLY caught off guard) and I didn't know they were seizures at first because they were NOTHING like the ones she had at the beginning of all this. I could only tell they were real seizures (and not the myoclonic seizures from the brain damage) because she'd stare off into space, her mouth relaxed and wouldn't move, and between 'contractions' she'd cry or try to (you can see it in her face). She had 2 and both lasted about 4 minutes. I video taped them on my phone and showed the doctor when she came in to check her out. GOOD IDEA, GO ME! I was lucky to have one of my favorite nurses, an older one named Lisa who was VERY experienced and knew EXACTLY what to do (write down when it started, write down her vitals, watch her and how she's moving, write down when it's done, call the doctor, etc.). After the doctor came in and said she'd write for a dose of Atovan to be given she went right away and got it as soon as she could (I then called the nurse's station because Harley threw up and she was walking in the door before the nurse's station answered). We got her cleaned up, changed her sheets, turned off her feeds, and gave her the Atovan. She seemed to calm down and stopped having seizures after that, but it made us realize that we may not be able to take care of her at home, alone. Can we handle rushing her to the ER everytime she has a seizure? It would sure be nice to have that care facility closer to home... But it isn't so... tough. Anyway, they ended up just stopping her feeds and putting an IV in around midnight.

She just got IV fluids until Sunday afternoon. They were giving her half feeds through her G-tube and half IV fluids. When I left last night it was a little more G-tube feeds than fluids and today she's back up to the normal amount of feeds and they still have her fluids going a little bit. She hasn't thrown up today, either! Good girl!

Thursday, May 14, 2009

May 14th

Tomorrow we will have another care meeting. This one will focus on where Harley will go after she's discharged from the hospital. We've been having some difficulties coming to a decision that will work for everyone, so we figured if we expressed all our concerns to the doctor and social workers maybe they can help us come to a conclusion, or at least direct us in a way that will help.

Yesterday I FINALLY got to go with Harley on a wagon ride! It was about 8:30pm and she actually had her eyes open and looking around! (no bright sun to hurt her poor little eyes) It was nice and cool with a slight breeze, just enough so she could feel it on her skin and in her hair. It was PERFECT out, I couldn't have asked for better weather.

Monday, May 11, 2009

New Update

The neurologist came in on Friday and told us the muscle biopsy results came back and she does have Alpers Syndrome. I asked them about her expected life span and he said it depends on what we want for her. We can either keep doing all this, as in taking Harley into the hospital everytime she has a seizure that won't stop and putting her in a coma on life support, etc. etc. Or, the dreaded option, just letting her go. The first one could go on for about 3 years or so, the first one would probably be months. We haven't signed a DNR yet, aren't really planning on it anytime soon. We're just sturggling with the decision of what to do.
Another big decision is where she's going once she's released from the hospital. We can take her home (we're kind of scared to do that) or to a group home or even a 'halfway' home. The 'halfway' home (which is probably where we'll go) is for people who get discharged, but aren't quite ready to go home (like if you're in a wheel chair, but live on the 2nd floor with no elevators) or need more experience with the medical equipment you're getting sent home with, or if you don't know if you can go home or need a skilled nursing facility (group home). We're going to go 'tour' them and make a decision sometime this week, maybe.
Other than all that bad news, Harley seems to be doing okay. On Mother's Day, Harley and I hung out at the hospital and I spent alot of time just holding her and talking and singing to her. She seemed to really like that, even tried to smile! (I think.) I enjoyed just having Harley and spending time with her while I still can. Cameron got me a purple frosted cake that said 'Happy Mother's Day Katie!' (honestly I still haven't eaten any of it- brought it to my mom's house, though and I'll have some at lunch). My mom and dad gave me a beautiful January birthstone pendant of a girl (gold with a CZ head and the [garnet, I believe] birthstone in a triangle for her dress and gold 'beads' linked together for arms and legs) and a thick gold chain. I have a whole necklace with my family on it, but my mom wanted me to have one just for Harley for Mom's Day. It's really beautiful, I love it!

Friday, May 8, 2009

From May 7th

Harley had her surgery this morning and was, once again, my strong, brave, big girl! She was a trooper and didn't have any problems. They put just a G tube in (just the valve that goes into her stomach, not the tube that goes down into her intestines) and if she needs the J part, they'll put that in after about 4 weeks. Let's hope she does good with just this part and doesn't need the other attachment. They're giving her her meds through the valve today and will start the feeds tomorrow.After her surgery she woke up and had her eyes open and everything. She only really got mad when we moved her (as always), but other than that she did great! It actually seems she can move her arms more fluently and with more purpose (instead of the 'myoclonis' from her brain damage that makes her arms jerk randomly). She's opening her hands and fingers more and even SLAPPED THE DOCTOR when he came in to check out how her surgery went! That's my girl! It was the cutest thing ever! He said something like, 'Oh, she's just like my ex-girlfriend!' and her eyes popped open and she just wide-eyed stared at him! Lol! She's got her little attitude back!

Thursday, May 7, 2009

Another Donation Spot.

I have set up a fundraiser for lil Harley also. You can check it out at

May 6th

The muscle biopsy results (which will either prove or disprove that Harley has Alpers Syndrome) haven’t come back yet. The MRI results, however, ARE in, but we’ve heard 2 different things from 2 different neurologists. 1 said her brain DID shrink more, the other said it’s about the same. I wasn’t there when they came in and talked to Cameron, so I haven’t seen the new MRI compared to the last one, but when I do I’ll let you all know what’s going on.
Harley seems to be doing a little bit better every day. Yesterday, Daddy and Grandma (Cameron’s mom) took Harley out for a wagon ride. She even got to go outside! It’s the first time my poor Honey Bear’s been outside in over 7 weeks! (Since she was admitted.) She kept her eyes closed the whole time, but that’s because she wasn’t used to the bright light. Grandma also worked with Harley in moving her arms & legs. She even got to hold the TV remote! It’s okay, we told her we wouldn’t tell Daddy. She’s starting to control her head better, too. She’s been opening her eyes wide open for us and looking all around her room and even watching some TV.
Tomorrow around 8:30am Harley will be going in for surgery to have a GJ tube put in. It’ll be a valve in the side of her abdomen with a tube that runs to her intestines. It’ll be in place of the feeding tube because it’s more permanent and causes fewer problems. I’ve been told it’s a common procedure, so we shouldn’t have anything to worry about.
That’s about it for now… Once again, thank you everyone for all your support!!!

Tuesday, May 5, 2009

From May 4th

Yesterday, Harley had yet another MRI, but this one was real quick and didn't need sedation. Mommy actually went through it with her! Mommy also was a bad girl and almost didn't take out her piercings, belt, glasses, phone or her debit card out of her pocket. Good thing the man running it noticed and asked me to take everything off! I laid down on top of Harley, 'Superman Style' as the MRI tech described it, and held her head really still. Both of us had ear plugs in, but we could still hear all the noises. Harley was FACINATED with them! She was wide awake the whole time (maybe 5 or so minutes) and kept looking around at where the sounds were coming from. She was such a good girl and stayed really still for Mommy!They've been weaning her off one of her anti-seizure drugs, Atovan, and that's helping with her being more aware. She's had her eyes WIDE open alot more and she's 'talking' to us, too. She mostly just whines and groans, but I can tell the difference from when she's upset and when she's trying to talk to us.A surgeon came in today and told Cameron they will probably do the surgery to put in the GJ tube on Thursday. I'm going to see if they can move it to Friday so I can be there and not take off any work, but we'll see. I've been told it's not a risky procedure, so that's good news, but I'd still like to be there when she gets it done.Once again, we all REALLY appreciate all the love, support and prayers from everyone. I never thought one little girl could touch so many people's hearts and lives. If nothing else, Harley has taught us all to keep fighting, because life is DEFINITELY worth living. Every day is a wonderful gift, and every loved one in our lives, be it family, friends, co-workers, etc., playes a role in who we are and who we choose to be. We have to be thankful for those people because they help us through the hard times and celebrate the good times with us, too. I am thankful for each and every one of you who come to Harley's page and check in on her progress. I feel so blessed that I have such a large network of support. I honestly couldn't have been so strong without all of you and your kind words. Each and every message has helped me through this rough time, wether it's just 'I'm so sorry you have to go through this, I'm praying.' to a whole novel about a personal experience you've been through and telling me if you can do it, so can I. Sorry this is so long, I'm done now. : )

Sunday, May 3, 2009

From May 1st

We met with the doctors today and they are pretty sure she has Alpers Syndrome. It means she has abnormal mitochondria (part of all cells that makes energy) which caused her to have the seizures and may also affect her liver. It's fatal and she will most likely die from this. The neurologist said it can take anywhere from a few months to a few years, just depends on her. Children are mysteries, though, so keep praying for a miracle, because they do happen.Also, they are talking about removing her feeding tube and putting in a GJ tube. That will be a tube that goes from outside her stomach to her intestines to feed her. That's more permanent than the feeding tube and will cause less problems.She also has a UTI and an infected PIC line (like an IV) in her arm. She's getting antibiotics for both and the PIC line was just removed. They'll probably put in a central line in place of the PIC.When all this is said and done we'll talk about either bringing her home or moving her to a group home. I'll let you know more as I find out. Thank you all for your love and support, we all really do appreciate it.

From April 29th

We ended up not having the brain surgery done; we talked with the neurosurgeon right before it was scheduled & he said it's not needed and the chances of it giving us results of what is causing all this is slim. We can always change our minds and have it done, but for now we cancelled it. We're not telling our family or anyone else, so I wanted to at least tell you ladies: my mom asked him what he would do if it was his granddaughter in this situation & he said pray, get hospice involved & grieve. Oh, and he was adamant on us writting a DNR (Do Not Resucitate) so she can go peacefully. How long does she have to live, we asked. He said since we don't know what's causing her brain to shrink it could stop today, but if it doesn't, she'll have about a month.
I just don't know what to do. I spent all yesterday crying, it seemed. I've talked with my mom and blamed God for hating me and wishing I could just die and let her live. I don't know what else to do. I can't really take off work because I've taken off all the time I can & now I NEED to work to pay the bills. (I'm not asking for handouts, just stating a fact.) I feel guilty because I got life insurance for her (like 50 cents a month for $5,000 coverage) through work, but I was too cheap to get the $10,000 one for just $1 a month. If she does die, I can't afford the perfect funeral for her like she deserves. Then I hate myself for thinking about my daughter's funeral when she really isn't doing too bad, physically.
Our first neurologist (we've had 3 so far) met with us yesterday and I asked him how a person's brain can be shrinking and yet they're still improving on the outside. He just said if the brain isn't affected in one concentrated place you can't really tell (and her's has been affected all over...). I just don't know what to do.
I'm working today and tomorrow and have Friday off for a 'Care Meeting' with all her doctors and I really hope I can keep composure for that. I'm hoping they can tell me 'Oh, no, she's not going to die. She'll be okay, this is just a minor set back. Her brain miraculously stopped shrinking!' but I know that'll probably be far from what's said.
I just keep thinking about it and wanting to cry. I'm at work, so I can't. If my daughter only has a month to live, shouldn't I be spending every waking minute with her? Why is money more important than spending my daughter's last days with her? Is keeping our apartment, where we won't mentally be able to live if she does pass, more important than her? Just some things in my train of thought...
I know I've been a good mom through all of this (even the doctors have said they're impressed), but that can't stop me from thinking these things. I was even telling my mom I can't imagine having to shop for toddler caskets and planning out a funeral for a baby who didn't see her 2nd year... My mom said she'll get all the info, put it up and will hopefully be able to shred it when she comes home. I have such a good mom.
Okay, I'm going to stop thinking bad thoughts and go back to optimistic while I'm at work. I just had to vent and get this off my chest to someone and it's easier for my to type or text than talk about it in person or over the phone. PLEASE just keep praying for a miracle, everyone. If anyone deserves one, it's Harley...

From April 27th

I guess the neurologists want to drain fluid from Harley's brain today. I don't know why or when, but I'm going to get off work as soon as I can (hopefully in an hour if my co-worker calls me back) and run down there. My husband couldn't understand the neurologist very well (his accent) and he just stopped him in the hallway and said it'd be sometime today. He's not going to sign the papers and let them do it with out me there, just tell them to come back later.
More discouraging news: she went in for an MRI Saturday and the results were that her brain shrunk a little bit more. Only a little, but still... Since she's been awake, doing therapy and is alert, shouldn't she be getting better instead of worse? I just don't understand it and it's SO frustrating having to work and not be there to know ALL of what's going on. I have so many questions and there are limited people who can answer them for me. My mom's having the doctors set up a meeting with me and all of them to discuss what's going on since I haven't been there. Hopefully that will help.
Other than that, Harley's been doing good. Her chicken pox look so much better and they're scabbing over nicely. I've noticed her arms can extend more now and she can open her hands, which is very promising! She seems to be more tired now, not really wanting to open her eyes much. It may be from med changes or being tired from therapy, so I'm not too worried.
That's it for now. Wish us luck and please pray if that's what you believe. Thanks so much for all the on-going support and love!!!

From April 20th

Sorry there hasn't been an update for a while, haven't had access to a computer. There should be more regular updates now, Monday-Thursday since I'm back at work. It's a good thing because Harley's doing well enough that I'm able to, but also upsets me because I can't keep as close of tabs on her. Anyway, she was moved to a normal pediatric floor, and I HATE IT!!!!!!!!!! We don't have any of our favorite nurses, they don't check her as often, and when one of her machines goes off, (unless it's her vitals) they can't hear it, so it just goes off forever or until WE call them and let them know! They don't change her diapers as often, bathe her, OR brush her teeth. They didn't even tell us we had to do all this, so it took me a few days to realize it. URRRG! I understand she's not in critical condition anymore, so she doesn't need as much intesive care. I'm very happy and thankful for that, too! I just don't like her being 'ignored' when I'm used to her either having her own nurse or sharing a nurse with just one other kid. Now it seems it's one nurse to 10 or so kids. I'm selfish, I don't wanna share!!!We have had one REALLY nice nurse. She's our weekend day nurse, Maria. She's been VERY helpful and nice, she's been showing us basically how to take care of her if she goes home on a feeding tube. DOESN'T MEAN SHE'S GOING TO, but she's just figuring in case she does, she'll give us some practice giving her meds through the tube, cleaning & refilling the formula bag, etc.She's also been doing good in therapy. She has a physical therapist, an occupational therapist and a speech therapist so far, soon to add a neurological therapist. She's already starting to get her muscle mass back a little, but it's a long process until she's (HOPEFULLY) back to walking, talking and eating again.Oh, and the REAL kicker: she has CHICKEN POX. She started getting red bumps a few days after the EEG (brain wave monitoring probe sticker things) were removed from her head, so we figured it was just an irritated rash, but then they got worse. They look NOTHING like chicken pox, but that could be becasue she got the shot, and apparently if you still get the pox after the shot it changes the look of the marks. Never heard of that until the infectious disease doctor told us. Speaking of which, she has so many doctors I can't keep them all straight! Neurologists (she's had 3 of them so far plus a whole team of 'helpers', I guess you'd say), Infectious Disease Doctors, Movement Disorder Neurologists, Geneologists, plus all the normal hospital pediatricians and intensivists that work on the floor in the pediatric units. And all the nurses and nurse's aids, too. There are so many people involved in Harley's care and I am SO greatful for all of them!!! Once again, thank you all SOOOO much for your support, thoughts and prayer. I do believe with all of us rooting for her she's pulling through this all. She's my little fighter, and she's already amazed the doctors at the hospital


I met Katie through Cafemom. Her daughter has been very sick and I wanted to creat a website to try to get the word out and get her some help. I will be posting som blogs that her mom has put on Cafemom.