Friday, September 30, 2011

Recovering

Lily's surgery was 10am on Tuesday morning. The surgery was the quickest one she has ever had and we were back in recovery in no time just watching her beautiful face sleep. She always takes a long time to wake up after anesthesia so we knew it would take her nearly an hour before she woke up and we were right. What we didn't expect was the 4 hour wait in recovery for a room. The room was about 50 degrees, no joke and we were starving. We never sat that long before in recovery. When Lily finally woke up she was pretty peaceful at first, then she started to cry, they put pain meds in her IV and she went back to sleep. Most those 4 hours were Lily sleeping, Andrew and I saying we were freezing, saying we were hungry and passing Lily's iPad back and forth playing some dumb animal pet shop game of Andi's that goes so fast you about have a heart attack trying to avoid unhappy customers. Perfect game for life's biggest people pleaser. Oh no, not an unhappy FAKE customer.

We got to our room around 4pm. Yes, I said 4pm..... and our nurse was a nurse that used to come fill in years ago as our home health care nurse. It was so good to see a familiar face and I knew we were in great hands. The hospital had built a whole new tower and Lily was the second patient in this room. It was quite beautiful for a hospital and although it wasn't exactly a staycation, it didn't feel like prison either. The nurses were all incredible and I will say it again, pediatric nurses are like no others. They have hearts bigger than the body that stores them and I am grateful to Phoenix Children's Hospital for staffing the best!

Lily was up off and on and was drinking and ate some but when I asked for pain meds I didn't realize we couldn't do it through the iv anymore and it didn't go well. Lily spit it out everywhere and we had a difficult night that night. In the AM she was drinking enough and wetting enough to go home and we were home by 10am. I got her meds at our pharmacy (Target, where every time I go there with Oli just to shop he points to the pharmacy and says "LolyNanna!" that's sad) and asked them to flavor the pain med as much as they could and it has helped some. I also have to be a big jerk and plug her nose and blow in her face to make her swallow. It's awful :( but when I let her go longer than 5 hours she is so sad it is too much to bear so I choose being a jerk over watching her suffer.

Yesterday wasn't so bad she drank pedisures all day long, ate applesauce, pudding, naked juice, and yogurts and she seemed to be in a decent mood.

Wednesday Andrew had to head up north to work on a house and I scheduled the surgery fully aware of him going out of town, so I had Lily's new caregiver come Thursday so I could take Andi to gymnastics and had her come today so I could get some errands ran. Plus I think Lily wanted me to leave with her brother and sister. They are so loud.

So loud.

Today Lily woke up with some really dark circles all around her eyes. They almost look bruised. She has been a lot more mellow today and while she's been sleepy anyway, even more so it has seemed. This AM I got a call from my friend Nancy who said go online to Texas Roadhouse and look at their menu and let her know the order for our family and she'll bring it over for dinner! Her hubby is the head honcho at the one by us and that place is yummy! It was such a blessing since Andrew is gone to have dinner brought to us. Nancy, who watches Oliver 2 days a week, knows that Lily lives and breathes for a loaded sweet potato from there and that is what she brought her. I was excited to have Lily eat with us tonight because she hasn't since Monday, but when I put her in her chair and gave her a drink she just started crying, and this is the saddest cry she has ever cried. I put her back on the floor, gave her another dose of pain meds, it had only been 4 hours, I wanted her to go longer, but apparently she still needs it around the clock. After 30 minutes I sat her up and she ate the whole darn thing! But while we were waiting for the meds to kick in I was eating with the other two, but Andi said she'd rather lay down with Lily than eat. So I ate with Oliver while the girls held hands and listened to Jewel Twinkle Twinkle. It was the most precious moment. I just love the love that is shared between these two girls. I often will get bogged down thinking what their relationship *could* be, but then I see moments like this and it takes my breath away and I know their relationship is exactly as it *should* be.




Daddy comes home tomorrow and I'm really looking forward to having him back. He has been very missed. Very. Thank goodness for Skype! I'm like a walking ad this blog.... it's a real shock with my quality of writing I am not sponsored.


So from what I heard we should plan on the next several days to be more of the same. All in all she is being an incredible trooper. I know I would be crying in my room demanding silence. I would never get it, but I would certainly complain louder than my sweet girl.


The other two are down for the count and it's only 8:30pm! It's time for Lily's night dose and for my dose of wine (barefoot riesling cheapest one at target cha-ching ;))

Monday, September 26, 2011

What did the one tonsil say to the other tonsil?

This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight. Insert laugh.
You have to insert it because I can't do it myself. Ugh. Thursday I miss a call at 4:30pm to schedule Lily's surgery, I listen to the voicemail write down the number and call her back only to get her voice mail that she left for the day. So did you leave my message and just run out of the building like it was on fire? How did she go from there to schedule to gone... things we may never know.
Anyway, I call her Friday am and I tell her we have a whopping 2 1/2 weeks off for fall break and how lovely it would be to schedule during that time, she puts me on hold and says there is no way the Dr can do it then, I'm thinking great they won't do this until November when Lily is in the middle of one of her common fall/winter long colds... but no she says can you do Tues the 27th? Gulp.. yes. I guess. Ugh. It is here so quick :( I'm just in knots. I know of 4 people 2 adults and 2 kids who have had them done fairly recently the 2 kids were very recent and I'm scared for Lily. I hate to see her uncomfortable and from what I understand it can be very uncomfortable. I know to keep her up with the meds and that helps a lot. But still, sucks.
I know it needs to happen though. Our family all stayed in a (I'm struggling here with a or an, an is phonetically correct just sounds wrong, I will leave it as a and let you all either correct me or just judge me on my poor grammar) one room hotel room this weekend to go to a wedding and that poor girl wakes us all.night.long. I pray that this will improve her sleep some. I pray that it is mostly from the tonsils and adenoids and not all neurological. I pray she handles this like the trooper she is and she is in wonderful hands. We will be staying in the PICU Tuesday night and will hopefully be home by Wednesday. It's such a juggle with 2 other kids. Andi has half day on Wed and Thursday and I really hope I am able to swing the parent teacher conferences for both girls on Wednesday, but we have it all figured out and we should survive. Just like with everything else. My sweet girl has to yet again go under anesthesia as well as undergo another uncomfortable recovery.
I will hopefully have wifi at PCH and be able to update every one.
Keep her in your prayers please.

Friday, September 16, 2011

Updating

Time for another update on Lily. Still no surgery scheduled. Just because she had that whole heart thing and had the holter monitor now they need clearance (Clarence, Roger Roger - sorry that Airplane quote always gets me when I least expect it) from Cardio. Geeze so thorough... I'm being facetious, I appreciate the whole wanting to make sure her heart can handle surgery.
I wonder why they don't want to check mine. I am fairly certain hers can handle it better than her moms.
Anyway, so no news there. My friend Kim said I should schedule it for months out just so when it actually happens months away I won't be annoyed, it will be ontime. Spoken like someone who knows the fun of dealing with lots and lots of Doctors.
We went to see again our new neuro, but I think this one will stick. She was very smart (duh), kind, gentle and beautiful. Not really want you expect from a neuro/epileptologist. She wanted a plan, not just a short term plan, but a long term plan as well. We are trying Zonegran again, it's been years since we tried it. We will also be putting Lily on the modified Atkins diet which is not as extreme as Keto, but a lot of times just as beneficial. I am starting that after her tonsils are removed obviously. Maybe not obviously for everyone, but when you get your tonsils out you eat lots of popsicles, ice cream, ie cold sugar. Not really so much items from a high protein diet. So there, now you know obviously.
If in a few months if the Zonegran and diet are not stopping the tonic, tonic clonics and drops then she wants us to seriously consider going ahead with the full callosotomy.
Quick back up when Lily was 2.5 yrs she had brain surgery, a corpus callosotomy, but they only split her about 1/4-1/2. They are essentially stopping the right side from "talking" to the left. Like a serious break up. They typically just do half in hopes that is all they need to do, but sometimes especially in kids with LGS (lennox gastaut syndrome) they do better with the full callosotomy. I am very anti this. I guess basically because it requires cutting my babies brain in half literally. I came in with guns blazing ready for this option to be brought up yet again, what I didn't expect was for my husband to put my guns down and ask real questions that made me consider. And just consider the option. Andrew hates the amount of meds she is one. As do I, of course, but he is looking at the long term effects more than I do I guess. The surgery done properly will not change anything about Lily. My biggest concern. They won't be removing anything so she would still be Lily. Prior to the first surgery Lily had 6 tonic clonics a day making the surgery our only logical step, but she isn't that bad now so it is hard to say yes to this next step, but considering how much less her seizures are with the 1/2 maybe the full would eliminate those seizures and she wouldn't need to be on that many meds anymore. I always thought it was the Vigabitrine that stopped her tonic clonics, but maybe it was the surgery. I don't know. The surgery doesn't help immediately right away so when she came out of surgery seizing that wasn't a huge disappointment, let me clarify IN THE MEDICAL WORLD, to me it was the biggest sucker punch life had ever dealt me, but maybe knowing more ... maybe asking more questions....maybe more research. Maybe, just maybe, just just maybe, it could be in our future. BUT what I am praying for is that that getting her tonsils out with improve her sleep and her seizures will be better after good sleep and then the diet will help as well and we will see enough improvement to get her down to one maybe two meds. So friends I ask you all as well to say that prayer for Lily, but I also know God is in control and if the surgery will be what puts Lily's brain at rest then I pray that option will be made very clear. What I have been explained over and over again the tonics and tonic clonics are the seizures that most often take lives and I am not going to let seizures win. I will not. We have fought seizures for 9 years starting Sept 21 to be exact and we won't quit. Nope not ever.
So please continue to keep Lily in your prayers. I know many of you have since the beginning and I know God has held our hands through each step, even on those days I let go of his hands, and on those days I pushed him away, and on those days I clung to him. He never left our side. I know he won't and have full comfort in knowing he will see us though.
So that is my update for now. Work smerk... just kidding Dad. I am back to work! Yup... just working away...

Wednesday, September 14, 2011

Convert your blessings

We go to a pretty awesome church. Like the most awesome. Just this past Sunday we came to church knowing that we will leave barefoot. This was our 3rd Sept doing this. We did have fair warning and came to church with our shoes on, plus a bag full of others, and we left them back with about 3000 other pairs that will be hand delivered in Africa by a group of people hopefully including my hubby.
This service is called Barefoot Sunday and it is as inspiring as a church service can be. We learned what Jesus was all about when he walked this earth and what he did for others. We were challenged to convert our blessings upon others. People that some may see as invisible (or rather people that exist that some never see). People that many ignore. People that may not be like us. We heard a quote by Bono that ended like this "God is with us, if we are with them". What a time to look into our own selves. Look into our own selfishness, time for us to walk barefoot and feel what the hot ground feels like on unprotected feet. Our family went to Chipolte for lunch after that service and we were all barefoot. All we did was hop from the hot surface to the hot sidewalk to the cold a/c filled restaurant then the same scenario back to the car and home. It was hot, our feet burned and we experienced that for a few minutes. How many generations live their lifetime never with shoes on their feet?
I felt so inspired to do more. I give my blood every 2 months. We serve in our church nursery, but I want to give more. Get out of my comfort zone and do more! We signed up for Live Love next Saturday where we will go into a local neighborhood that needs some caring on and I signed up to build in Mexico in November, I will be sleeping in a tent. That, if you know me, is enough out of my comfort zone. I HATE sleeping in tents and sleeping bags. Ugh. But see that is why I need to do more. The old me would be far more concerned with Missoni being at Target, this new girl only looked online at those beautiful clothes.....sigh...so beautiful. You know I fell in love with Missoni when a stylist brought it to a editorial shoot I was modeling in when I was 15 years old. I though one day I will own a piece from that line. But 17 years later I still don't. But I know that my life will go on even if I never do get a piece. But it would be fun and maybe when we are on baby step 4 I will get a piece, thanks for totally changing my whole perspective on life Dave Ramsey... wow squirrel moment.
Annnnd we're back. I want to do more. Give more. I am a blessed woman who has a husband, 3 beautiful kids, a home, air conditioning, food in our fridge, even a swimming pool, we are blessed people and there are so many out there who are not. My thinking has changed, I've slowly been changing, but I feel like I recently took a giant barefoot leap and look forward to seeing what other changes are about to come to this family.
My space bar isn't working well, neither is my e, the x is missing and the ; is like a loose those just hanging there, I am telling you that b/c my writing doesn't feel very fluid and for that I blame a 2 year old.

Friday, September 9, 2011

You probably think that you're cooler than me

Andi Jane has been bugging me to sign her up for gymnastics. I had been stalling since she like most politician she is a flipper. One day it's basketball, the next is synchronized swimming. I wanted to make sure I was not better off flushing money down the toilet, but she was persistent and her coming home like a bucking bronco, "playing" which quickly turns into fighting with her brother was enough to let me know a little organized exercise might not be such a bad idea. So I had her signed up for a trial class at a gym about 8 min from our house. Yes 8, more than 5, less than 10. On the drive there we have to go through this road where there is a little airport and a bunch of hangars. All around the area is fields and a dairy farm. Andi Jane starts explaining me rural areas as opposed to city. I said that this all seems pretty rural to me and she was telling me that I was wrong. And then she said, "mom I just rolled my eyes at you", not smart enough to not tell me that vital information yet I decided to change tactic with her. She thinks she is cooler than me. She is 6 and thinks she is cooler than me. So I say "see those hangars? That is where airplanes park, one time I was in a commercial and we shot the whole thing in a big hangar in Tucson and it was freezing in there!" "You were in a commercial?!" she asks wide eyed totally listening to me, "yes but it only aired in Japan" I answered, "You went to Japan!?!?" she asked again eyes filled with wonder, "No we just shot the commercial here and they aired it in Japan" I answered thinking, ha your mom is cool little Missy and then she says a disappointed "oh". Oh so my commercial that only aired in Japan that was shot in a freezing hangar in Tucson all of a sudden was of no interest at all. yeah she just might be cooler than me.

Tuesday, September 6, 2011

Silly Boy

So there is this Family Guy clip that I have seen since Andi Jane was in this phase, you know the mom, mom, mama, mommy, mom, mom, mama, mommy, MOMMY, MOMMY, MAMA ......
So we showed Oli this clip and he LOVES it and likes to mock it.
Here he is. It is dark, sorry, but all you really need is sound.

Friday, September 2, 2011

Quick Update

I just wanted to quickly update from Lily's ENT appointment. He was very nice, on time and cute with Oliver as well as spoke to Lily not just me. Those are all major pluses when dealing with a Dr. He looked at her sleep study and said she had 10 apnea spells and hour and when I said "wow" he said that was moderate. Yikes, glad she isn't severe.
Half the time there is obstruction and that is why he agrees the tonsils and adenoids should come out. He said it won't help her completely, but it will help and she may sleep better.
I have been praying that we will be told what we need to do for Lily so I am going with this as it is supposed to be. But I am not gonna lie, I do not want to put her through this. Breaks my heart.
I have been around 3 people who have had those taken out in the past years and they all said it hurts. Hurts bad.
As a strep throat every year kind of gal (3x in 2010) I know that a sore throat can bring you to a crying little girl. It was me last year, just wanting death to take me away. The only comfort is I know she will get good meds and we will have to keep it up every 4 hours and maybe that way if we are proactive, she will not be too miserable. But with no caregivers right now and not even a sight of one in the near future, I am a little worried about taking good care of her and not letting the crazy other two make things too hectic for Lily bug. I was thinking we should do it during fall break but then thought her home all week long with her brother and sister all house bound? Maybe not such a great idea. They should be calling to schedule so we will get that done and plan accordingly. She will stay one night in the hospital if all goes well, so that is actually a good thing. I feel better having help from nurses after things like that.
Pray for Lily and her mama's heart as we get ready for yet another surgery.
2012.... please tell me you have a rainbow with a bag of pedicures and facials at the end of it. Please.

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