Fire Fighters.

On Thursday night around 7 or 8pm the firefighters who came for Harley back in July stopped by our apartment to see how Harley (and us) were doing! It was such a sweet gesture!
I heard a semi in our apartment complex and just expected some car to be towed. When we looked out our window, we saw the fire truck pulling up outside our apartment. We were just worried they were there for our neighbor (she's my age [young] with a daughter that's the age Harley would be and she was sick the other day...) so I looked out our peephole to see if they were going next door and told Cameron 'They're actually coming here...' He answered the door and they were like 'Do you remember us?'
We talked for a while and they told us they still talk about us at the station and about how good we took care of Harley. They were genuinely impressed! It touched our hearts that they still thought about Harley and us. We told them Harley passed and they gave us their condolences. They said the day they came for Harley they wrote down our address so they could come back and check up on her, on us! They were so sweet! We want to do something for them like bring them all lunch one day down at the station. My cousin happens to also be a firefighter (different city, though) too, so I'm going to ask him what we could do for them. I just still can't believe it! I am so touched! I'm so glad Harley touched the lives of so many. Every day it seems I find someone else who Harley (or her story, even) has touched and how it changed their lives, if even for just a little bit. I love Harley so much, she still doesn't cease to impress me, even in Heaven. <3

The Compassionate Friends.

So I finally felt up to it (and didn't forget) and went to my first meeing of The Compassionate Friends. First off, I couldn't walk in the door without breaking down and crying. Besides me, the newest person lost their son a year ago in September (it's been about 3 months now for me, doesn't seem like it, though). Hoenstly, bad first meeting to go to (it was their holiday celebration), but I'm so glad I did. They had a very emotional candle lighting for all the lost kids and everyone (even me) went up, lit a candle and put down a picture of their loved one and said "I light this candle for my (son, daughter, etc.), (name)" etc. It was so hard! Oh, and there was a slide show of all the lost kids and of course it was put to really sad music. Afterwards they had a pot luck dinner with everything from home made meatballs to Jack in the Box tacos. It was awesome! I tried not to eat too much, though because my husband had dinner waiting at home. Overall, I met some wonderful people there who know the loss I'm going through and are able to help me first hand. Their meetings are once a month, which isn't bad. I think I'll fit in just fine there and I'm really glad I decided to finally go to a meeting. = )

Not Having Another Baby Just Yet

I ended up going ahead and getting my depo (birth control) shot. My husband said he just isn't ready yet. He thought he was, but he's not and that's all that matters. I'd rather wait longer than necessary rather than not long enough. Thanks, ladies, for all your continued support; we sure need it. <3

Another baby?

I've been kind of wanting another baby, but my husband's been hesitant on the idea. We visited the in-laws this past weekend and while we were there we FINALLY stopped fighting so much and agreed to be more patient with each other. (YAY!) Cameron's been saying he NEVER wants anymore kids because Harley was PERFECT (and looked like him) and there's no way any kid could EVER come near how perfect she was. Well, when we were visiting the in-laws Cameron meantioned having another baby (FIRST time he's ever mentioned it). He asked what I thought about it because he said that's the only way he sees his life getting better instead of worse, since his family has a history of alcoholism and he's headed down the same path if something doesn't change. We talked about it and our fears and I think we may just be TTC here soon. At 10 weeks gestation we'll be able to do genetic testing to see if the baby has Alpers like Harley and we've agreed that if it does we'll terminate the pregnancy. There is no way we can put another one of our children through the suffering that Harley went through. It hurts me so bad to agree to that, but we ourselves can't handle it, either. I don't want to have the baby and just wait until the day it starts having seizures, knowing it's the end of their short life; it's just not fair to any of us. We still aren't 100% sure (and my mom will NOT like this, but it's not her life) but he threw the idea out there and that's a start! I'll let you all know what happens as it occurs. = )

Signs From Harley

I wanted to share with everyone the signs we’ve gotten so far from Harley! Here goes:



First sign: Cameron was lying in bed one night, really missing Harley. He rolled over and made a little spot for her, like she was really there. Next thing he knows he can actually FEEL her there! She knew he needed her so she came and visited him! How cool is that?



Second sign: I was in the shower, washing my hair, when I realized my left pointer finger hurt. I looked down and see an indent like one from a ‘hair tourniquet’. Let me explain: When Harley was about 4 or 5 months old, we were giving her a bath and noticed one of my hairs wrapped around her finger on her left hand (it may have even been the same finger!). We tried to cut it off, but it was on too tightly. We took her to Urgent Care, where they told us this was actually quite common. The hair gets wrapped around the finger and then starts to tighten, hence the name ‘hair tourniquet’. They had to poke and prod her poor finger with a needle to try and cut the thing off. Poor baby girl. They almost had to send us to the ER! They finally got it off and her poor finger had such a deep cut on it from that stupid piece of hair. We had to put antibiotic ointment on it to make sure it didn’t get infected. Anyway, so I look down and see the exact same mark on MY finger. There is NO way my hair made that deep of an indent in my finger. Crazy thing was it was only on the top of my finger! It went away after a few minutes, but that had to have been Harley!



Third sign: Last night, I brought 6 huge balloons (they took up my whole backseat!) and a plant with yellow flowers to Harley’s grave. I tied the 6 balloons onto a weight and then onto a garden stake we have there. I only tied 1 knot, but figured with 6 huge balloons on 1 side of the ribbon and a weight on the other end, there’s no way the balloons should come untied, right? Wrong. I then bent down to try and get some wax off some fake flower petals that were in a candle holder my sister-in-law, Rebecca, made for Harley’s gravesite. I noticed out of the corner of my eye that the balloons were a little farther away than they should be. I looked up and they had COME OFF THE GARDEN STAKE! They only floated a little ways away, so I got up, grabbed them, and then tied them back on the garden stake with SEVERAL knots this time. I didn’t realize it then, but that was Harley playing around! My little girl is still full of mischief…



It’s so nice to know that Harley still has her playful attitude. She’s still the same little trouble-maker she was here on Earth. We love and miss you, Honey Bear! You'll always be my little girl. We’ll see you again one day in Heaven. <3

The Day Harley Earned Her Wings

Let me just start by saying Harley had the fatal, genetic, mitochondrial disorder Alpers Syndrome. It ultimately caused her to pass (death certificate says 'Cardiorespiratory Failure'), but I'm pretty sure it was a mix between her liver failing and causing her to swell so much she had trouble breathing because it pushed on her lungs, and my poor baby already had pneumonia all over both lungs as it was. She did SUCH a good job, I'm so proud of her! The nurses didn't expect her to make it through the first night in the PICU (Friday) without being on a ventilator, but she made it 3 nights and a day!


The day she passed (Monday), we had to decide on the brain surgery in the morning, first off and the neurologist and neurosurgeon both said we could put it off (from looking at the CT scan earlier that morning), so we did. Then, they did another chest x-ray and saw the pneumonia was getting worse. Then they did an x-ray on her belly because it was the most swollen we'd ever seen and it wasn't getting better. We had a scare that there was an air bubble near her liver (?), and if there was we'd have taken her home right then and there because that's a death sentence.



Turns out it wasn't, so we went home to take showers and got a call from my mother-in-law that they were going to put her on a ventilator because her stats were dropping and we needed to get back; they were going to try and wait for us. We hurried back and literally RAN through the hospital to her room. I was catching my breath when my husband asked if I told her I loved her. I said not yet and gave her a kiss and said I loved her and as soon as I backed away from the bed the nurse yelled for the crash cart and everyone came in their yellow gowns (contact precaution for Harley's well-being) and started giving her epinephrine to get her heart started again, did CPR and bagged her. The doctor was yelling orders to everyone and my mother-in-law, husband and I were just freaking out crying and trying to stay out of the nurses' and doctors' way. We kept yelling encouraging words at her "Come on, Honey Bear! You can make it! Big girl! We're so proud of you!" through our tears and I kept rubbing her left foot because that was all I could reach without being in their way and I got Cameron to do the same.



They kept checking her pulse and saying she had a weak heartbeat, so we felt hope until the doctor pulled Cameron and I aside and she said they'd been trying to resuscitate her for 20 minutes and she didn't think she was coming back. It didn't even seem like a minute had passed. She then went to go oversee the nurses trying to bring her back and we cried and waited probably a minute or two more (I have no conception of time for when this happened) then decided we needed to let her go. We went to the head of her bed while they still did CPR and ran our fingers through her hair and kissed her and cried. We told her how much we loved her and how so very proud we were that she fought this long. I told her to say hi to my Uncle Wayne and (grandpa) Pa (in Heaven) for me. We then told them we wanted to stop, so they did. I remember watching them take all the lines off her and take the tube out of her throat from bagging her. They let us hold her and sit with her and our nurse, Bree, gave her other patient to another nurse so she could stay with us. She was so nice, I will never forget her.


When I was holding her I asked my mother-in-law to call my parents and tell them because I couldn't through my crying. I also asked her to call my boss, Ron and let him know, but when she did my husband grabbed the phone and told him for me (my husband used to work at my job with me, so he knows my boss). The first person I called myself was my co-worker, Michelle. She had just lost her 27 year old brother suddenly and unexpectedly a week or so before and she's the 1 co-worker I'm closest to and can tell anything to. I then believe I called Ivy (MommyIvy- CafeMom) because she's been such a help updating everyone for me and also because the CafeMom ladies raised over $200 for a shadowbox with a bronzed hand and foot print and I wanted to make sure I got that done because it meant allot to me and (I'm sure) all the ladies who helped raise the money. After that I think I sent a quick text to everyone to let them know and to also say I'm not responding because I was still spending time with Harley. The pastor also came (one I didn’t know yet) and said a prayer with us over her and gave us his card if we needed anything. I have no idea what I did with it, maybe it’s in the ‘So your child died…’ packet. (That’s not what it’s called, it’s very sensitive and informative. I read through most if not all of it that night because I didn’t know what else to do.)


About that time my husband was freaking out and had to leave. He started packing all of our stuff into a wagon that the nurses brought us. The social worker (I think) came in and he brought some purple ink and cards to do her handprints and footprints for us. I asked for 2 of them, 1 for me & 1 for Cameron. They also did clay hand and footprints, too. Those didn’t turn out too well and that night I wrote her name and birth and death dates, then tried to smooth out the cracks with water and it ended up growing mold (didn’t know it’d do that, I’m so upset over it...). We took off the purple hospital gown she was wearing and kept it, instead putting her in a sundress that my mother in law bought her. It was white on the top, then light green then turquoise on the bottom. It was sleeveless with a little frilly on the straps. My parents showed up about the time Cameron started packing, maybe a little before. He ended up driving home and dropping his mom off and I went home with my parents because I wanted to wait for the lady who does the bronzed hand and footprints.


I remember almost every time I’d sit her up to readjust her on my lap her nose would bleed, but it wasn’t just blood, it was clear, watery liquid with some blood in it. I kept wiping her nose off like she was still alive, still talking to her and saying things like “Your nose is leaking, Honey Bear. [Wipe her nose] There. That’s better.” After a while I stopped crying and just held her and rocked her (I was sitting in one of those gliding chairs.). I kept rubbing my fingers through her hair and touched her face and just looked at her. After a little while the blood in her body started to ‘pool’ since her heart wasn’t circulating the blood anymore and she started to get dark red blotchy patches on her feet. I rubbed them and they’d go away. She also turned more yellow. I look back at the pictures and right after she passed (when the only pictures are of Cameron and I bawling our eyes out) she had a more normal skin tone, then the later pictures she was more yellow.


It felt like forever I was sitting there with her, but also like it was 5 minutes. It couldn’t have lasted longer, or shorter. Confusing, I know, but the time drug on in a sense, but also sped by. The lady finally came to do the bronzed prints (maybe around 11pm or 11:30pm? She passed at 9:22pm.) and apologized for being ‘scrubby’ (like we looked any better) and late, but she had a long drive and tried to shove down dinner, too. We didn’t mind. She was very nice and caring, helped that I had cried myself dry, too. Harley’s last nurse, Bree, stayed in the room the whole time to answer questions and be there for emotional support. The lady mixed up the clay (4 of them) and put them on the meal tray holder thing for a flat surface. I held Harley with her back to my chest and stomach with her feet dangling and we did her hand first. I think it was her right hand but I’m not even sure anymore. We did her hand prints twice (same hand) then her feet (I think that was her right, too). Then the lady gave me her card, a receipt that she did it (she said not to worry about paying her that she’d get the payment later) and a sheet with sayings on it for the plaque. I still don’t know what I’m putting on it. Maybe her name, ‘Honey Bear’, birth and death dates and a saying or maybe even something about CafeMom because I would NOT have been able to do it without them and their donations.


The lady then left when she was done (said she got REALLY good prints!) and I laid her back on the bed. Cameron had already gathered together all of our stuff and brought it home, so I didn’t have to worry about that. He had already called me a few times (from home: he’d already dropped his mom off) and was really upset still and needed me to come home, so I didn’t stay for her last bath like I REALLY wanted. I figured Harley wouldn’t mind if I went home to Daddy because he really needed me. My thought almost exactly was that Harley had already passed and instead of staying and giving her a bath that I needed to get home to Cameron, who was still living. I have a small twinge of regret, but I know in my heart that I did the right thing.


Leaving her there, lifeless, on that hospital bed in the ‘F’ wing of the ICU at Phoenix Children’s Hospital was the hardest thing to do. I took pictures and told her I loved her, knowing she’d always be with me now and could enjoy her existence again. I didn’t think I could do it, but I did. I left her body there, alone, with Bree, her nurse to go home to my empty nest. I left the hospital where we’d called home for the last time, empty handed and broken hearted.


While in the hospital, we’d always slip and say things like “We have to be getting home now.” When referring to the hospital. I joked that “Home is where the Honey Bear is.” or “Home is where the Harley is.” When I got home that night, after 1am and after the long car ride home with my parents (and after stopping at McDonalds to get something for Cameron and I to force down our throats) I realized how true that was. For 14 months we never thought about where ‘Home’ was and what it meant. It was just some place that we stayed at, ate at, slept at, etc. As soon as I stepped in the door and saw Cameron on the couch, distraught with no T.V. or video games on (which is very unusual for our house) I realized how empty this building really was. It wasn’t our ‘Home’ anymore. Home is where your family is, the ones you love and care for. The one we love and longed to care for was now in heaven.


Her empty body, just a shell, a vessel for her beautiful soul, was left behind at the hospital. I am so thankful we transferred to Phoenix Children’s Hospital. I know this may sound morbid, but I felt some peace with the fact that her body would be at the hospital’s morgue with other children, instead of adults. I feel more precautions should be made and more respect should be shown when it’s a child’s body, especially an infant’s, ESPECIALLY MY daughter. Going off of how the rest of the hospital staff had treated Harley (and us) I wasn’t concerned. I know they (regrettably) have children earn their angel wings almost every day and they have a good reputation of being sensitive to patients’ and families’ feelings, very empathetic. I feel like every single person that works there, from the doctors and nurses to the cafeteria workers and janitors, love children very much. Everyone there cared so much for the kids; I would not hesitate to recommend PCH to ANYONE and EVERYONE.


That night, we brought all our stuff in the house from the hospital (and that’s all it was: STUFF. I’ve realized cars, houses, electronics, etc. is just STUFF. I don’t care about STUFF anymore. I could have my whole house robbed, car stolen, bank account depleted, etc. and it wouldn’t upset me as much now as before Harley got sick. It wouldn’t feel like the end of the world like it would have back then…). We just laid it on the ground in front of the T.V. in the living room. We sat on the couch, drained, wondering what to do next. It eventually ended up in her crib (also in the living room) which is where it still is today. We didn’t sleep very much that night; Cameron brought our top mattress out to the living room (we always did that so we could hear Harley’s alarms) and we just kind of laid there and felt depressed.


That’s my story of the day Harley earned her sweet angel wings.


-Katie Marie Pollock
Eternal Mother of Harley Kayleen Carson

Another Raffle

Emily is holding a raffle for a customized baby sling. Go check her out. All proceeds are going to Katie and Cameron.

Raffle

My friend Holly is holding a raffle to raise some money to help Katie pay for funeral expenses. She is raffling a pink Coach purse. If you are intreseted in helping out go here. The raffle will end Friday. Thanks for all your help!

Balloons For Harley

Flowers Have Been Ordered

Thanks to all those who donated. I have ordered the flowers.



We are thinking of you during this rough time. Harley has touched many lived. She is loved by many and will continue to be loved.
SIGNED: The Cafemom Moms

Services For Harley

Harley's services- Friday, August 28; viewing @ 12:30pm with services to follow @ 2pm. Community Church of Joy 21000 N. 75th Ave. Glendale, AZ 85308.

Talked to KatieToday...

Katie said she is doing better than she thought. She is getting on the funeral stuff figured out. She wants to thank everyone for their support and donations. She said the casting lady got there right after she passed and they got a good print. I asked her if there was anything she needed and she said that she needed money to pay bills.

Tag for Balloons.

A fellow follower, Emily, has made a tag to attach to the balloons. Thanks for participating.

Flowers

I want to get a big flower display for Katie. If you are interested in helping out there is a pay pal button at the top of the screen. Thank in advance.

Balloon Release

We are going to do a balloon release for Harley on Saturday Aug. 29th at 1pm CST. The color we have chosen is purple. If you would like to take pictures and email them to me, we are going to put them together for something for Katie. My email is sissygurl_02@yahoo.com. Thanks again.

Harley has gone to see Jesus....

Katie just called me and said little Harley has passed. She said that Harley had waited until they got back(The had gone to take a shower) and then she passed. Please keep Katie and Cameron in your thoughts and prayers.

Keep Praying.

Harley had another xray done today. Her pnuemonia is getting worse. She is also seizuring and the meds are not stopping them anymore. They will probably be putting her on a ventilator soon. Please keep praying!

8-24-09~~~Updated~~~~

Harley woke up last night! Her CT scan is set for sometime this morning.


Cat scan was just done and there was no change in Harley's brain. They are goint to put off the surgery until they have to. Katie said they have moved her to a "big girl bed" so Mommy and Daddy can snuggle with her.

Update

They are not doing the surgery today. They are going to do a CT scan tomorrow and decide then. Katie says she is a little more responsive today!

Katie posted this on Myspace

Harley was basically unresponsive all yesterday besides when she opened her eyes & peeked at me twice when I first saw her and she squeezed Cameron and mine's hands once each. We moved up to the PICU where they did a CT scan and found bleeding in her brain from her brain shrinking and the veins rupturing. She also has pneumonia all over both lungs. They scheduled brain surgery today at 2pm to relieve pressure in her brain, but only if her blood can clot by then since she was on blood thinners.

8-23-09 2am Update

Harley has pneumonia in both lungs and bleeding on her brain. They are going to do surgery @ 2pm to relieve some pressure. Keep praying for her and her family.

8-22-09 11PM

I talked to Katie and she said Harley has opened her eyes a few times and has squeezed her and Cameron's hands. Keep praying for her and her family!

8-22-09 9PM

Harley and her family could use your prayers now more than ever! Harley has fallen into a sort of deep sleep and has not awoken, the Drs are unsure if she will wake up!

Please Keep Them In Your Thoughts!

8-22-09

We had our first care meeting on Wednesday morning. We were all so excited that the doctors, even the doctor representing palliative care and Hospice, never mentioned a DNR! They were all so wonderful and listened to us, GENUINELY! We made up a plan and set goals to get her home, get her on physical therapy, and get her equipment that will make our lives easier like a special 'Kid Cart' and a mesh netting for the bathtub so we can submerge her for her baths without using a newborn bathtub. They also have a neat program at PCH for music therapy. A guy comes in and sings and dances for the kids! They're signing her up for that, too.

She's been peeing very well since the catheter's been out and pooping well, too. She's now on a formula called Peptomen 1.5 that has a higher calorie count (more concentrated, basically) so they can give her less without skimping on the good stuff, so to say. They're hoping it helps with her belly still being so swollen, but so far it hasn't. They're supplementing water in her diet by giving her little bits at a time through her G-tube (one that goes to her stomach). It's not working out too well, though. When they gave her an ounce yesterday and clamped it shut (so it'd actually absorb instesd of draining out) she ended up throwing up water and stomach acid! They unclamped it and as soon as they did stomach acid was GUSHING out faster than I've EVER seen! The diaper it drains into was FILLED before the nurse even left the room! Poor baby, she just really needs the G-tube to be able to constantly drain now. They stopped the water for now and might try it again in a day or so.

The doctor has also noticed that her color is looking better! She has some days that are better than others, but overall it's gotten SO much better! We're all anxiously awaiting her blood test results to see how her liver's doing now.

Also, the last blood test they did showed lowered white blood cell counts and they were worried she might have pneumonia. We did a chest x-ray on her yesterday to check and are once again awaiting the results. Her platelet level in her blood was also low and they were debating doing a blood transfusion (she's had a few, so I wasn't worried). I haven't heard back whether they did one or not, but I'll post when I hear more.

Maybe Monday?...

Talked to Katie(Harley's Momma) today. She said that Harley's stomach is pretty bloated, but that they may get to bring little Harley home Monday. Lets all pray that everything goes smoothly.

Also, we still need $130 for the Shadow Box. We only have until Sept. 4th to get it raised or what has been collected will go back to the donaters. Please help if you can!

Fundraiser for Shadow Box

We still need $190 for the shadow box. That's just 19 people pledging $10. Come on, we can do this for Harley's mom!

Donate Here

8-17-09

Wow, alot has happened since Tuesday! I've been with Harley at the hospital, unable to update. So here goes!

First off, we moved her over to Phoenix Children's Hospital from St. Joe's on Friday. Let's just say we felt like they'd done all that they could (or all that they WOULD, I should say) do, so we figured it wouldn't hurt to get a second opinion. So far so good! They don't cater to the parents as much, (no more private rooms with our own bathroom, there's 2 patients to a room now with 1 pull out bed/ chair per patient and 1 bathroom, but ONLY patients can use it: the parent's bathroom is down the hall. Oh, and no more free family meals anymore, either...) but it doesn't matter as long as Harley's getting the care she needs.

Wednesday night her body temp actually got pretty low, SCARY low. We bundled her up with warm blankets and put a hat on her head. She looked like a little snow baby! Her temp finally went back up to a more comfortable level around 3am. Since then her temp has still been running low, but it's for the most part stable. The doctors think it's due to her brain loss. Sometimes when an infant (or anyone) has brain loss their brain can no longer regulate the body's temperature, causing fevers for no reason and also causing the body's temperature to drop for no reason.

She also went 15 hours without peeing on Tuesday; they had to put a cathedar in. After that she peed fine. The doctor said it's common for kids with any sort of mitochondrial disorder to have problems peeing or going poop because the muscles become weak, and you use your muscles to pee and poop. Today at 8am they took the cathedar out finally and she's peeing great! She's actually peeing more OUT than she's getting IN which is wonderful since she's still bloated!

They also re-started her feeds last night! They started them at 15 ml/hr and raised them 5 ml/hr (about half an ounce) every 6 hours. She's now up to 30 ml/hr! Yay Harley! She's doing great on them, too! They're proportionately lowering her IV fluids she's getting, too.

Overall, Harley honestly seems less yellow (Cameron, his mom and I ALL agreed, it's not just a figment of our imaginations anymore!), about the same bloating-wise (her belly went down then bloated back up after they re-started her feeds) and a little more tired, but when she's awake she's still alert!

Oh, and her carbon dioxide levels in her blood were apparently a little high, but not alarming. We're going to have a care meeting sometime this week, probably Wednesday or so, with all the doctors to kind of make a plan of what we'll do for Harley. Hope all goes well! I'll update as things happen. = )

8-13-09

So, Harley's liver is failing. Her skin is getting yellower every day and her belly keeps swelling pretty bad. I guess I've finally come to the realization that Harley is going to die and this is the beginning of the end. I keep praying and hoping she'll somehow be a medical miracle, and it may somehow happen, I sure hope & pray it will but it's highly unlikely. To make matters worse the doctors seem to have basically given up on her because she's dying anyways. Right now her temp is low. We loaded her with blankets and a hat trying to get her body temp back to normal. So far she's being a trooper and fighting to warm back up. We have it set up to transfer her over to Phoenix Children's Hospital tomorrow; let's just hope they can do more for her than they have been at St. Joe's. Honestly we're just hoping she makes it through the night; a low temp is not good, no matter how you look at it.

8-11-09

Yesterday they did an ultrasound on Harley's heart and the blood clot is completely dissolved! Yay! She was moved from the 7th floor PCTICU to the 2nd floor, normal Pediatric unit.

Honey Bear didn't have a very good night last night. She ran a fever of 102 degrees and they couldn't keep her Oxygen stats up. They took her off her feeds and put her solely on IV fluids because she was having such a hard time. Guess we'll just have to see how today goes...

8-10-09

Wow, Harley is such a talker! Over the weekend she was awake and alert, opening her eyes and talking to us! One night I got up to use the restroom and was quiet so I wouldn't disturb her and then I hear "Mom!" from Honey Bear! She sure knows when someone's in her room and moving around! Over the weekend I heard her say 'Mom', 'No', 'Yeah', and 'Baby' (I asked her if she wanted her doll and she said 'Baby'!). It's so exciting to actually be able to converse with her! I can ask her 'Do you want water?' and she'll let me know (we put some in a water bottle cap and pour a little at a time in her mouth).

Besides that there's good news and bad news. Good news is that the blood clot is still shrinking and the doctor said they'll do another ultrasound today to make sure the clot didn't just move. Lookin' good towards going home!

Bad news is that her liver is still failing. The whites of her eyes are turning yellow, a trait that happens due to a failing liver. They put her on a new med that'll help her liver function, I hope it helps and maybe just maybe will 'kick-start' it into working again? Ya never know...

A few pictures of Harley

This was 7/20/09
8/02/09

This is from today

Shadow Box For Harley's Mom

I have put up a fundraiser to get a shadow box for Katie. You can click on the link below to donate.
Fundraiser

8-8-09

Not too much has been going on, which is actually a good thing! The doctors are focused on getting the blood clot the rest of the way dissolved; it's on the right track, luckily! Her belly has been pretty swollen, so they upped the amount of Lasiks she's getting. She's been running fevers on and off, so she gets Tylenol as needed and they're running cultures on everything to see if there's an infection anywhere. She's been on antibiotics just in case. She's not really having too many seizures, if any at all, really! She still has some small tremors on and off, but neurology stopped by and said if we're happy with they way she is (which we are!) then they're happy and they have nothing else they want to do to her. Yay! One more step closer to home. Speaking of which... (knock on wood) the nurses have been mentioning she's close to going home! (Yay again!) She'll most likely be sent home with the Lovinox shots (blood thinners). Cameron's going to be the one to give them, I can't! Even so, we're willing to give her a few shots a day to be able to be comfortable at home again. <3

8-3-09

Internet, phones & cable have been down all day at work until now so I'm going to have to update real quick before I get off at 5:30pm. : D

Wow, what an improvement since Thursday! They put her on TPA (a risky blood thinner [but potent] that they don't normally use because of the risks) which broke her blood clot down enough to take her off the TPA and put her on Lovinox, a normal blood thinner given as a shot in her belly. It has fewer risks and she can even be sent home on it if need be.

Her seizures have once again lessened (yay!) and she's more awake, too. She was even yelling at the nurses when they bothered her this weekend and opened her eyes more! She's got her little attitude back, it's so cute! Okay, that's the quick update for now. I'll try and update again later, gotta get to the baby! = )

A little update

Harley's blood clot is even smaller! Now she's on a normal blood thinner given via shot in her belly. She is also more awake and has her little attitude back!

Real Quick

Real quick: Harley's blood clot has doubled in size over the last few days. Cameron's coming to pick me up from work now to talk about what we're going to do about it. Will update as soon as I can.

7-29-09 Bad News

Quick update because I’m working the night shift tonight. Harley has a blood clot in the upper right chamber of her heart now, most likely from the IV in her neck (which is now out). They are giving her an anti-coagulant (makes the platelets [things that cause clots in blood] not so sticky so the clot can dissolve) and are going to do another ultrasound on Friday to check it. Only reason they found it is because they did an ultrasound on her heart to check her VSDs (small pinholes in her heart that are closing and they aren’t worried about them, just watching them still: she’s had them since she was a week old) to make sure blood wasn’t leaking out of her heart and they saw it.

More bad news to report is that her liver is starting to fail. The exact words were ‘not processing proteins’ and that her liver had ‘high enzymes’. For those of you who don’t know this is the next phase of Alpers Syndrome. They didn’t really tell me a plan of action for her liver failing, just that they’re trying to get all the levels of things like protein and potassium stable in her blood so she can go home and we can spend time with her. The only time frame I was given was weeks to months, it just depends.

Her bloating is a little better, but she’s not back to her normal self by no means. Apparently protein helps with bloating by keeping fluids in your blood stream instead of them leaking out and causing bloating. Well, the Lasiks, on the other hand, helps bloating by flushing out the excess fluids, including the protein. So they’re trying to keep protein in her and flush out the excess fluids, so it’s a vicious cycle. They are cutting back on the Lasiks and the doctor said she should be off of it in a few days. Also, this new ‘Boost’ formula supposedly has more protein in it and that’s why they switched from PediaSure. What I’m thinking is if her liver isn’t processing the protein correctly, then is that why she’s bloated? Just my train of thought…

Lastly, her seizures are still pretty bad. A little better today because she got more sleep, but still pretty bad. I talked to the doctor today and he said he’d look into raising her Phenobarbitol (the anti-seizure med they cut back on) back to the normal level it was at when we were home.

So, once again, there’s really nothing any doctor here on Earth can do for her, so it’s up to God now. Please, if you do pray, just say a quick one for her so that she’s at least comfortable and can enjoy the time she has. Thank you.

7-28-09

Last night I didn't get much accomplished. They did finally take the IV out of her neck and put one in her left hand! Yay! That helped the swelling in her face, too. They apparently changed her formula AGAIN to something called Boost. It's 'Complete nutrition for kids age 1-10', vanilla flavor. She's still bloated, still having seizures, still sleeping alot, still won't talk to us. They are giving her albumen (I was told it was protien and when I looked it up it's the whites of eggs, which would explain it being a good source of protien, but my husband is allergic to eggs: he can only eat 1 or so then he throws them up. He's had reactions to the flu shots, which has eggs in them, too. Harley hasn't really eaten enough eggs to tell if she's like her daddy or not.) which they say helps the swelling. She fell asleep last night, so they weren't concerned about her seizures because they stopped... because she passed out from exhaustion! Urrg! I guess tonight is round 2... wish us luck!

7-27-09

Harley wasn’t doing too well yesterday and last night. She’s really swollen and this time it doesn’t seem to be going down any. They’re giving her Lasiks more often now and her potassium was high (which apparently causes bloating) so they stopped supplementing the potassium in her formula. She’s also having seizures more frequently now, too.

When I ask the nurse about the constant bloating she just says her Lasiks was upped and the potassium was stopped. Other than that, I guess they don’t care. When I tell the nurse about her seizures she just says she charted it and will let the doctors know. This is really upsetting us that they aren’t addressing our concerns. Last time Harley was in there they did very well at ‘making us happy’ and addressing our concerns and I don’t understand why this time would by any different. If she’s still swollen by tonight I’m going to ask to talk to the doctor myself and let him/her know how upset we are by all this. Poor baby is so uncomfortable from the swelling and excess seizures she won’t talk to us anymore and is sleeping all the time again. I don’t understand why she was doing so well and now she’s back to where she was before. I guess we’ll just have to wait, probably do more med changes and see.

7-24-09

Harley is officially off the ketogenic diet and on Pediasure! The neurologists are blaming Harley's inability to make ketones on her Alper's Syndrome, but honestly it doesn't matter. She can have SUGAR again! Now I can sneak her tastes of yogurt, ice cream and other candy again! Yay!

Also, they started her on physical therapy yesterday! She came in and worked with Harley and even came back today! I'm so relieved they actually listened to me! I knew it wasn't like them to just ignore my request, but that's the impression I got everytime I asked.

Harley's swelling has gone down DRASTICALLY. They started giving her Lasiks every 12 hours to help her pee out the excess fluids and wow, what a difference! Her skin isn't as tight anymore and she stopped whining and talking all night: she actually sleeps through the night again! Poor girl was just so uncomfortable she couldn't sleep before.

Another thing accomplished is that they lowered her dosage of Phenobarbitol (seizure med)! She seems more awake without an increase in seizures! We're pretty sure they did this because her levels of Phenobarb in her blood lab were high, not so much at our request, but either way we'll take it!

She's also seen the pediatric GI doctor and all that he said was as long as she doesn't throw up any more blood he's not too concerned. If not then that means it was probably from some bruising and irritation from her GJ tube. If she does (it's highly unlikely since she hasn't since Monday) then they'll go down her throat into her stomach with a camera and look around for hemmorages, ulcers, etc. He's pretty confident he won't have to do that, though.

Harley on the outside is also doing GREAT! She's so much more awake (probably the most awake she's been since before her first stay in the hospital!) and looking at everyone and talking to us! I could've swore I heard her say 'Mama' a few times now (or it's just wishful thinking, but maybe not!) and when we ask her questions sometimes she'll say 'Uh-huh' like she's saying yes! Coincidence? Maybe, but it's sure cute anyways!

Well, that's all for now. Hopefully with the next update I'll be telling you all that Harley's home again!

7-23-09

On Monday morning, Harley threw up blood clots. Cameron called 911 right after calling me to come home. I raced home and arrived just as the fire truck was pulling up. Harley seemed to be okay other than throwing up blood; she was acting normal and looking around at all the paramedics. It was 10-15cc of mostly clotted blood so they decided to take her to St. Joe’s Hospital (at our request).

In the ER they said she was dehydrated and wanted to start an IV for fluids. They poked her and poked her but couldn’t get one started. They even had the SWAT nurse, supervisor and another nurse from the PICU come to the ER and try to get an IV started with no luck. At this point they gave her fluids through her G tube for lack of anywhere else to give them to her. Then, they had phlebotomists come from the lab to draw blood from Harley (2 of them) and they poked and prodded her even more with no luck, either. The ER doctor then came and tried to do a central line IV in her thighs with no success (he even used ultrasound to make sure he was poking her in the right place). At this point they said they would have to basically put an IV in her knee cap (straight in the bone!) to get her fluids because they’d exhausted all their other sources unless the PICU doctor had any other ideas. He ended up coming down to the ER from the PICU and put a central IV line in her neck, first try. Poor baby didn’t have any pain killers and STILL did GREAT! After that they were able to draw blood so they could do the lab that would tell if she needed to go to the PICU or a normal room; we ended up in a normal room.

Of course since we already knew everyone in the PICU on the 4th floor and on the 5th floor pediatric unit they would send us to the 2nd floor where we know no one. It’s been okay on the 2nd floor, though. WAY more confusing on where to go (we still have to stop and ask directions!), but we can handle that. First night we were in a 3 patient room with another family (that had NO bathroom in it; we had to walk past the nurse’s station down the hall and use a really short toilet for kids) and the second day I asked if we could move next door because 1.) It had a bathroom and 2.) The baby girl that was in there was discharged. Our nurse talked to her supervisor and got us our own room (a 2 patient room, but it’s all ours’!) with our own bathroom & its right by the nurse’s station! Only bad thing is there are no cots on that floor so that night Cameron & I slept uncomfortably on the couch until we woke up in the middle of the night and Harley’s nurse said she brought the chair from our old room over for us. How sweet!

Anyway, back to Harley. She was dehydrated with low levels of potassium and sodium, so she got bags of fluid for each and her levels went up by that night/ next morning, only then she was bloated from so many fluids so rapidly (and it didn’t help not getting up and moving around like when we’re at home- I requested physical therapy, but my requests are still unanswered. We’d do it ourselves, but with the IV in her neck it makes it more difficult.). We saw the neurologists, who were concerned that her special formula for seizures wasn’t producing ketones in her urine like it’s supposed to do. They suggested the geneticist evaluate her for a metabolic disorder, and as of now she doesn’t have one (thank goodness… poor girl has enough issues!). They are now in the process of switching her over to normal formula because her seizures are pretty well under control without her urine testing positive for ketones anyway. The neurologists are also re-evaluating her meds (FINALLY: only took Harley being admitted into the hospital to do so!) and I’m hoping we’ll be out of there in a few days. I work Friday night and Saturday morning to make up hours I’ve missed this week, so I’ll be able to update then, too.

7-20-09

Wow, what an improvement! Harley has been doing GREAT. She's more awake now, is moving her head a little and has even been trying to talk! (She opens her mouth wide and moves her lips and tounge.) She's on a more normal schedule (sleeps at night, wakes up during the day with a few naps) and has had NO seizures or throwing up for 2 or 3 days now! We started giving her meds through her J tube (the extention that goes into her intestines) instead of the G (straight into her stomach) and it seems to have made all the difference! We're still trying to get a hold of the neurologist, but in the meantime we've at least found something that works for us!

Other than that, she seems pretty congested, but at least she can cough it up and out of her chest. Also, she's been doing GREAT with no oxygen during the day (for the most part)! It's just been SOOOO nice to have her more awake and interacting with us! I haven't even thought about getting a picture of her with her eyes open yet, we've been too excited about her being more awake!

Oh, and she has her little attitude back! When she grinds her teeth we put a pacifier in her mouth, right? Well, now she tries to spit it out, which is fine if she stops grinding her teeth, but if not we force it back into her mouth. She used to just accept it, but now she waits till we aren't looking (or she thinks we aren't looking) and spits it right out. It's the cutest thing! She's not grinding her teeth as hard (at least she doesn't make her whole mouth bleed anymore) so we aren't too worried about her spitting them out. That's about all for now!

7-13-09

Okay, time for a weekend update! Harley's been doing pretty good, all things considered. Over the weekend she grinded her teeth so hard it made her poor little mouth bleed! I suctioned all the blood out and forced a pacifier in her mouth, which seems to have corrected the problem. From now on, if she grinds her teeth she gets the paci whether she wants it or not. She seems to not mind for the most part. She doesn't spit them out unless she coughs or throws up and she's perfectly capable of doing so if they bother her.

Harley also got to meet her uncle Guy from Washington State (Cameron's brother) and visit with her Papa from Prescott Valley (Cameron's dad). They enjoyed seeing her and she seemed to enjoy the extra attention she was getting.

Well, that's about it for now. We're just trying to get her out of bed and keep her awake as much as we can. I'll keep everyone updated!

7-1-09

So yesterday we had 2 appointments: 1 with her PCP/Normal Pediatrician (Dr. West) and another with the surgeon's office that did her muscle biopsy & GJ tube surgery (Dr. Avalia & Dr. Egan). Her appointment with Dr. West was at 11am and the surgeons one was at 2:30pm. Well, let's just say Harley missed her noon meds... and her 2pm meds... and her 4pm meds (which was just a breathing treatment: she's not dependent on them, so that's good). Those include a few seizure meds and some anti-nausea meds (not exactly, but best way to describe them).

Now, you would assume her being on so many meds she would be dependent on them and start having seizures and throwing up more, right? WRONG. (?) It surprised us, too! She did SOOOOO much better OFF the meds than when she's ON them! She didn't throw up ONCE all yesterday, had maybe 1 or 2 seizures (only for a few seconds) and was awake and happy! I talked to her, she'd look at me and make eye contact and she was more affectionate, too (gave me more kisses). She stayed awake for about 4 or 5 hours STRAIGHT and just seemed to be doing all around better!

Here I thought my daughter was getting so bad that she's too weak to stay awake for longer than an hour at a time and I come to find out she's just been knocked out from her meds! My poor Honey Bear! I'm going to call her neurologist and make an appointment for sooner than the one that's already scheduled: I want some of these meds GONE if we can help it (and it's looking like we can...) or at LEAST decrease the dosage.

Harley's been doing pretty good, though. She didn't throw up ALL yesterday and has only thrown up once this morning and it was only a little bit. Yay Harley! I'm sure she's happy, too. Thank you all for your continued support and I'll update again when I get a chance!

6-23-09

That's right, she's home! First night went pretty smooth, besides a few slip ups (like not plugging any of the machines in over night so they're all dead this morning). She's so much more content and happy! Her vitals are doing really well now and I don't even think her O2 sensor went off at all last night! (Except when she threw up and I was moving her around.) So far so good!

Going Home!

Okay, first off, Harley's J tube surgery went great! We left for St. Joe's Hospital about 10:30am and got back to Los Ninos around 4:30pm. She was only in surgery for about an hour and then off to recovery where Chaplain Michelle (from St. Joe's Hospital: she came around alot when we were in the PICU) baptized her for us. It was short and sweet, just like I wanted.

The J tube has helped with her throwing up, but it's only slowed it down instead of stopping it like we thought. Now she's only throwing up mucous and clear liquid, sometimes stomach acid. She's only threw up a few times where there's any formula in it at all. Also, the first few times she threw up after the surgery there were spots of blood in it. That scared us, but the nurses were right: it was just from the surgery and it stopped. She's now only throwing up 1-3 times a day and she's actually getting more of the formula through her system, which is great! I wish it would have stopped the throwing up completely, but I'm sure Honey Bear appreciates not throwing up so much.

Okay, now for the BIG news: WE'RE GOING HOME TODAY! Or so they tell us. Cameron said he thinks Harley even knows because she's been more awake and happier today! I'm in close phone contact with Cameron, who's at the hospital with her (I have to work) and so far it's still on for today, even though we still haven't received her O2 monitor. Cameron also said they still have to check out apartment out (which we weren't aware they had to do!) which is okay, except her room itself. We moved her crib into the 'dining room' so she can 'hang out' with us, plus it's just EASIER, and we have no where else to put her toys. It's piled in her room, in her closet, etc. We still need to go through her clothes and get rid of alot of them, too. Oh, and they told Cameron we may need to move her crib AGAIN because it's by the kitchen, which has a stove, and she's on oxygen. Uuuugggghhhh! Will this never end? I just want her home, though; AND SAFE, so I guess it's a good thing, but I'd rather just never use the stove. ; ) I can live off TV dinners! Anyway, I'll update again tomorrow with how today went. Don't be surprised if our house doesn't 'pass' or her O2 monitor hasn't come in or the doctors are still concerned about her throwing up, etc. and we're still at Los Ninos tomorrow. It's okay if that's the case, though, because that's all for Harley's safety and well-being. :)

6-17-09

Quick post today. I just found out last night that Harley's surgery is scheduled for Thursday. We'll leave Los Ninos around 10 or 10:30am and check into St. Joe's Hospital around 11am. Her surgery will be at 1pm. Apparently all they'll do is put the tube in through the hole for the G-tube and connect them. Not a major surgery, not even as major as when she first got the G-tube. After that she'll stay at Los Ninos at least for a few days for monitoring and (maybe just maybe) after that we'll be able to go home! I'm not sure if they'll let us or not (I think they just love Harley and don't want her to leave; she has that impact on people.) but her throwing up was the last concern Los Ninos had, so it's a good possibility!

6-15-09

We've now been in the hospital for 3 months. Harley has beat the odds more than once and is still fighting her little heart out as we speak. She's one determined little girl and will fight as long as it takes! Okay, now for the update:

Harley has still been throwing up every day. The doctor's wrote the orders for the J part of the GJ tube to be put in (to extend it to the intestines so she CAN'T throw up) and has contacted the surgeon, so I guess it's now just a matter of getting it scheduled.

Also, Harley's O2 (oxygen) has been dropping when she sleeps. It's normal for anyone's oxygen to drop when they're in a deep sleep, but Harley's has been dropping a little lower than they'd like. It's not too bad, only drops 1% or 2% below where they want it, but it's not good, either. She now either gets oxygen throughout the night or what they call a 'blow by' or something like that where we set up the O2 mask by her face, but not on it, so it blows O2 in her face. Still, it's only on 1 liter, so that's not bad.

We finally finished her antibiotic drops for her eye Sunday and the antibiotics for her ear infection are done tomorrow. Yay! Two less medications for Harley! Hopefully that's the end of the infections and such and Harley and her body can just focus on getting better.

Last thing I'll add today: we've finally signed a DNR. But, let me add, the only thing it prohibits is putting her on another ventilator. We still want everything else done, if need be like CPR, giving her O2, AED (heart shocking device if her heart stops), etc. It is JUST for ventilators. It's my husband's wishes, I'm more of a 'case by case' basis person and for me it all depends on how Harley's doing at the time. I understand his wish for her not to be on a ventilator, though, and I agree that it was a sort of 'torture' for her (not really, but it was such a discomfort that we don't want to put her through that again).

All in all, though, Harley is still fighting like the big girl she is. She still recognises her dad and I and kisses us back (when she wants to) when we kiss her lips (she puckers her lips against ours). When I touch her chin or rub her cheek she'll give us a faint smile, too. I still have my Harley and that's all I can ask for. : )

06-08-09

So we are still at Los Ninos. Her meds are finally under contol (covered by insurance and all) but now they are worried about her throwing up so much (it's anywhere from 1-4 times a day it seems). Now there's talk of putting in the J part of a GJ tube (a tube that will go from her stomach to her intestines, basically so she CAN'T throw up). Doctors orders are in to talk to the surgeon who did her G tube (see if it's been long enough for the G part to heal).


On top of the throwing up, Harley now has a staph infection in her left eye (I didn't know that was possible!). We've been putting eye drops in (3 times a day) and that has seemed to have helped (otherwise her eye gets really crusty; has even crusted shut a few mornings).


On top of the staph infection, she also has an ear infection in her left ear, too. Apparently kids who throw up often are prone to getting ear infections. Our doctor said a study was done where they found stomach acid (or some enzyme from the stomach) in kids' ears who threw up alot (like, if they're sick and throwing up constantly, more than once a day or so). So, now we've started an antibiotic for that.


Harley's appointments to see all her doctors have all been set up and she's started going to them. First one was on Wednesday for the geneticist. Not much happened, they checked her out and had Cameron fill out paperwork for the first in-office visit. Dr. Amatto (geneticist) also had Cameron fill out paperwork for us to get genetic testing done, too. Not really to see IF we are carriers or have Alpers Syndrome (we obviously both are carriers and if we had Alpers we'd most likely have showed symptoms by now) but mostly for informational IF we have future children (it's looking like no at the moment...).


Harley had a swallow study done Friday, too. She was sat up in a therapy chair (like the one we have for her at Los Ninos) and given baruium in different consistencies. First they did the consistency of honey (with chocolate flavoring), which she swallowed, but aspirated (it went in her trachea/lungs). Next they did the consistency of pudding (tasted apparently like marshmellows...) which she swallowed a little bit of, aspirated a little (not as much as the consistency of honey) and kept the rest in her mouth. I thought she was choking! (But we were watching her airways on X-ray and could see she wasn't.) They used a syringe to take out what she wouldn't (not couldn't, WOULDN'T) swallow and when we got back to the hospital I suctioned out the rest. She is such a chipmonk! (Like me, I guess...) She kept most of the stuff in her cheeks! I made sure to brush her teeth really good, too.


Other than that, Harley's doing okay. I think she's ready to go home, though. I think we're all ready. Once we get her home I think she'll improve some more. It'll let us all relax a little bit and just enjoy being a family and spend more time together.

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!

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!

Update

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!

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!

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.

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!

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!

Another Donation Spot.

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

http://www.fundable.com/groupactions/groupaction.2009-05-02.8351995270

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!!!

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. : )

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

Hello

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.