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Saturday, January 26, 2013

5 days home

Hi guys I'm so sorry I haven't posted for so long but it is we were discharge fromthe hospital things just started To get super busy and I haven't had any downtime all week. Finley is doing great. Her motor function is doing awesome and she does not have a limp anymore. We have a physical therapy evaluation on Monday to determine if she needs services but other than that her motor is doing awesome.

The one side effect that we have had from surgery is the continued loss of bowel and bladder function. We still do not have either of those back yet but we are praying that they will come back in time. The neurosurgeon seem to think that she is in spinal shock right now and with all the swelling its going to take some time for those functions to come back. They may never come back or they may come back - we honestly don't know. We are treating it as if they will never come back so we can be prepared and excited if function returns. Really, all of this is a lot easier than I thought. Catheterizing is totally easy and something that we will teach Finley how to do herself very soon. The bowel regimen is coming along and we are working on perfecting that but we've made tremendous progress this week and it seems to be just a once a day thing thats really no big deal. I would really appreciate prayer for the two areas that they will return. I just don't want Fin to have to deal with it for the rest of her life but if that is what God has planned for her then we will make it work.

The neuro wants Finley off school for six weeks minimum and possibly longer. I have gone through the process to get her placed on home hospital teaching which basically means they send a teacher to the house for one hour a day five days a week which is totally awesome in my mind. The teacher just called this morning and she is going to start on Monday so hopefully Finley will not fall behind in her academics.

So, we have a lot of things going on but all of them are in the right direction we're feeling pretty good right now. Finley is an amazing strong kid that has just gone along with all of it like it was nothing. The bowel regimine, the cathing, all of this has been nothing for her and she has just taken it in stride. She's truly an amazing miracle child and we feel so blessed to call our daughter.

We have an amazingly fun next two days with our friend ava's birthday party at Disneyland so I will update with the pictures from that. Thank you guys so much for all your continued prayer and again sorry for taking so long update but all is going well.

Monday, January 21, 2013

Discharged!!!!!!



Discharge day!!!

Praying today is the day they let fin go home. She is so excited but it may not be till later today but if she is in her own bed tonight- life will be perfect!!! We are done with the hospital. Seriously??? You are supposed to heal and sleep in that noisy place? Almost impossible. Our roommate left yesterday evening so the bed next to us was empty all night and fin is not on any prescriptions so they hardly came in at all and we slept so much better!!! At least we slept well the last night-lol!!!

Neuro came by and is getting a urology consult and they should come by this morning sometime. We still have no bowel and bladder function so we will be going home catheterizing her and putting her on a bowel regimine. She does not seem to have any feeling down there and while the neuro said that is normal after her type of surgery, he also said function and feeling may never come back and that it may as well. He said it could take months. We are specifically praying for her full feeling and function for her bowel and bladder to return. She has been a continent little girl her whole life so having to be cathed and have a regimine to move her bowels is a very uncomfortable place for her. She is a trooper and taking it in stride but its been hard. It's been hard for me to process the lack of feeling and function. I thjnk I went into this surgery not thinking this might be the end result. Didnt even think she would
Lose her bowel/ bladder function. I thought we caught it early enough before surgery but when you have that invasive a surgery where you are dealing with nerves,
Lots can happen. I'm trying to be strong for fin and not make her any more uncomfy than she already is but this has been a lot to process both intellectually as well as emotionally. Yesterday was a hit the wall day where I was literally hanging on by a thread and the second I went home to shower I just lost it. The loss I feel for fin losing these basic life functions is overwhelming. I grieve for this and while she still has a great chance of function returning, I'm just not going to cling to that and them be heartbroken when it doesn't. I think we will need to treat it as if its gone for good and then be surprised when it returns. I'm feeling better this morning and my emotional state is much better.

It looks like today is our discharge day. We are not sure When but should be sometime today. I'm so thankful as my Tuesday and Wednesday at work is psychotically busy so it will be nice to be able to not have to find replacements for all my meetings. Fin is sooooooo excited to go home. Literally giddy! She is such a homebody that this has not been easy on her and she has been a trooper through the crazy ER time to the two sedated MRI 's through the 8.5 hour surgery and three days of laying flat in bed without her head even being elevated to being poked and prodded for numerous blood draws and iv lines and being cathed many times a day. She has taken it in stride and has been such a trooper. I'm so impressed by her.

The neuro that did the surgery just came in and he's hooking her up for everything including physical therapy so they are supposed to come in and consult today as well. You can see the genuine distress by our dr. He said electrophysiologically she is in tact so this is why he can't understand her level of loss. He was just scratching his head and genuinely concerned. He says he really doesn't know if it will return. He says its within the realm of possibility. To see his disappointment and having him apologize just broke my heart. He is such a gentle wonderful man and I told him that either way she was losing function and we HAD to do surgery one way or the other. I told him that if it comes back that is what we pray for and that is great but if this is what God has for her then we will take it in stride and deal with it. God made finley into a strong little girl and he did that for a reason. If this is her challenge then we will take it and run with it. God is good all the time and there is a reason for all of this.

They are having 2 urology tests done before discharge- one ultrasound and one invasive one- ugg! This will give the urologist info on her functioning before they see her Wednesday. They will also have physical therapy consult and they are ordering her 6 weeks of PT as well as 6 weeks of home hospital school.

So that is it for now. Please continue to pray for return of function. Pray for finleys emotions and ours as well. I'll update you soon!!

Sent from my iPhone

Sunday, January 20, 2013

Off bed rest!!!

Already have been on a big walk outside and to the cafe for some
Mushroom soup!! She's happy as can be. Even ran into dr Zouros in the lobby and he said she was moving like she had never even had surgery!! He was impressed!!! Now we need to get the pee and poo going and we are good to go! Still thinking tomorrow for discharge Yaaa!!!



Saturday, January 19, 2013

Day 2 post op

Today was a great day for Finley. She was in good spirits and had lots of visitors. She was happy all day and really seemed like back to normal. She is still on flat bed rest but will hopefully be taken off laying flat tomorrow sometime. The neuro came by this morning and since fin still can't get the pee out he wanted me to learn to cath her as he said lots of kids that have this invasive a surgery do not get bladder function back for a few moths- yikes!! He said 30% of kids will never get function back but since she feels the need to go but just can't go- that's a good thing. Please specifically pray for this. The neuro said she will probably be released Monday afternoon IF her bowels get moving. She has yet to have a BM (sorry of this is tmi) but if everything is flowing appropriately then Monday should be our day. Please also pray for that. I literally can't miss work Tuesday. I have 5 BIG meetings I can't miss - and wednesday is no better and if she is still in the hospital things are going to be difficult. We will make it work but a Monday release will make life super easy.

Fin has had to be flat on her side this whole time but had gone into the bathroom to try to pee and when she does she walks normal--yaaaa!! She was kind of jetting her leg to the side this morning like she was when she was limping but I told her to walk correctly and she did!!! Yaaa!!! They seem to think that tomorrow when she is able to get out of bed and everything starts moving again that all those functions will also get better. We are praying that is the case. Even if everything does not come back (bladder) then cathing isn't too hard and we will make it work.

So tomorrow is one day closer to discharge. Again, specifically pray for her bladder and bowel function to return. That is huge and we would appreciate all the prayer we can get.

Praying for a good night sleep. I'll update tomorrow!!!

Christy :)



Friday, January 18, 2013

Day 1 post op

Sorry for the lack of updates today. Ill start from last night. Today overall Was pretty darn good. Finley slept well last night (night after surgery). Not much pain. They only have her on Motrin. Crazy. But she's fine. Ive asked her a ton of times if she is in pain and she says shes fine. She has been eating and drinking well all night after her mri this morning was done. she had to have an "after" sedated MRI this morning which I was not overly happy about but she ended up sleeping really well for a while today.

The neuro came in this morning and took her catheter out and we are hoping she will have full sensation to pee. So far, she feels like she needs to pee but when she sits on the toilet she can't get the pee out. They say this is common after surgery not to be able to pee for a while but im a little freaked out because we have had to cath her twice which worries me. She was fully continent before surgery so we praying she will still be after surgery. Please pray specifically for this.

I was so excited this morning to have been able to meet dr Zouros who was the dr who consulted on finleys file before we accepted her referral. It was his recommendation that gave us the final push we needed to accept her referral and now here we are - crazy!!! He rounded with dr Sadanand who is our neuro that follows fin and he did the surgery yesterday. Dr Sadanand gave me more info in the surgery yesterday and he said that because Finley was so unusually tethered that there ended up being a ton of people in the OR with a ton of medical students and residents. He said there was quite a gallery of people watching as her level of tethering is something they rarely see. He also said all the students and others were equally shocked when dr Sadanand told them that with all that tethering that she was fully continent with no limitations. They were shocked she was not horribly disabled and couldn't believe she was a super high functioning kid that only started having symptoms as of Saturday. She is a miracle!!

We are struggling with her staying on her side or stomach. I almost wish she could be on her back as that is her natural way of laying. I'm constantly checking her and moving her back into her side. They don't want her to put pressure on the wound so that's why she's not in her back. Dr Sadanand and Zouros said that if she has no leaks of cerebral spinal fluid and she is able to pee and poop ok that we will be discharged at the earliest on Monday. Could be longer if there are issues but we are praying for Monday.

Finleys spirits were Better today. I think it's sinking in that we are in for the long haul but she does keep asking to go home. Owen and Mia visited today and last night emery came in for a few. My parents came last night and today as well as some Wonderful people from our church. Tomorrow we are having lots of visitors so I'm sure Finley will be entertained.

So that was today. I'll update tomorrow. Please specifically pray for her bladder to go back to normal. Thanks

Thursday, January 17, 2013

Talking like crazy. Eating ice chips. Being sassy as can be.

Surgery is done!!!

Plastic surgeon just left!!! She said the lipoma removal went really great!! She has a nice rounded butt and that everything went really well. It's amazing what they do. She used xtra bone for xtra protection to her cord and then she made her a cute butt. She is in recovery and we are waiting to be able to go in and see her. She has been asleep since 8am so this is going to be hard for her to wake up from. Praise God she did so well!! Pray for pain management. I'll update when I see her

Neuro is done!!!!

We just met with the neurosurgeon because they are done with their part but plastic surgery is closing and working on her lipoma. So she is still in surgery but will b done within an hour or two. Said fin was the most tethered and stretched spinal cord he had ever worked on and it was a miracle she had been ok in the past. Praise The Lord!!! Can you believe the most stretched and tethered cord a seasoned neurosurgeon has ever seen was on a little girl who has NEVER had one symptom before Saturday- a miracle for sure!!! He completely detethered her and only 1 nerve "rootlett" ending that goes to her anus was damaged and he does not think that will affect her. He said everything looks good but she can possibly tether again in the future. Ultimately he was pleased with the result. Plastic surgery is in there now and will be probably an hour. We will know how the plastic surgery repair went in a few. They started surgery (after taking her back- she was sedated-) 2 hours late and we found out It took so long for them to begin because they were having trouble with getting an arterial line. Also they realize her sacral bone was misshaped and he had to get an X-ray of it before they begun and then had to cut the bone to reshape it. Crazy!!!! I should hear more soon. They want her off activities and school for 6 weeks minimum. She will not be on her back for the next 2 days rather will be on her side or stomach. Bring on ideas of what she can do!!! I'll update soon. Thanks so much for your prayers. We have felt them all!!!!

In surgery

They took her at 8am. Lots of tears for her and mama and daddy. She is in good hands. Please lift her up.

They changed surgery time-yikes.

They just came in and are taking Finley as the first case of the day at 7:30am. We're freaking out since we thought 10am so we planned on that for all the kids and child care arrangement. This is a surprise and Finley is quite shaken. Please pray. She is supposed to go in at 7:30 just 45
Min from now and Kev isn't here yet- still frantically driving. Please pray!!! Very nervous. I'll update ASAP.

Wednesday, January 16, 2013

Surgery time

We finally got Finley surgery time after waiting forever for it. I guess because this is an emergency surgery and that's a long surgery they have to kind of fit it in where they can so they're able to fit it in 10 AM tomorrow morning. That means on the operating table at 10 AM so they'll probably start the prep couple hours before that. We've had lots of visitors today and Finley is doing well. She is a little needy right now and worrisome but I'm now back to the hospital and kev and i spend a little bit of time together with her before Kevin Left to go relieve his mom whose been watching emery. We all are a little nervous and worried about surgery but we know God has this covered and we dont have to worry about anything.

The plan at this point is that the neurosurgeon will go in her original scar and attempt to detether the spinal cord as well as clean out any fat or scar tissue that is in the spinal column. They will have a doctor who is simply watching the response of the nerves that the neurosurgeon is stimulating to determine what the actual function of the nerves that he is touching. After they are done cleaning out And detethering they will then allow plastic surgery to close so they can finally remove the large Lipoma- fat pad- she has over her scar. That will be an amazing blessing as the fat pad is starting to cause her a little self-consciousness so having that removed will be wonderful for her and clothes will begin to fit pretty normal after this. So plastics will close her and basically clean up her lipoma and do a little bit of a scar revision and then they will close. They're estimating the surgery will take minimum of six hours and could possibly be longer.

Please lift fin up in your prayers. She is a trooper and understands minimally what is going on and is ok with it. The hard part for her will be the pain so we will stay ontop of the pain meds so the pain doesn't get out of control. She will have a tough recovery. I have been told that this surgery is very painful and to make it worse she has to lay completely flat for 3 full days-ugg- to make sure she is not leaking cerebral spinal fluid. Pray for her comfort.

10am is the time. Please cover Finley in prayer. She is a tough kid! Please pray for the other kids especially Mia and emery. Mia is scared for fin and said tonight when she visited that she had never been without fin. She is nervous. Also emery is being put through the ringer as well. She was with Kev this am but the was passed off to grandma which she loves but then I came home for a few and spent 20 min with her then had to disappear (shower and nap) for 3 hours then came downstairs and spent 20 more min with her then passed her back to grandma. She was very upset. The same thing will happen tomorrow so please pray for emery as she misses us so much.

Thanks so much for all of your prayers. We have felt them. We also are so appreciative of our wonderful family and friends who have been helping with child care, pick up, drop off etc. we are so blessed to have so much support. We love and appreciate you all!!!

I'll update you all as soon as we see the surgeon in the morning. For now fin is asleep and doing well!!!

5:52pm update

Ok we saw the neurosurgeon this mOrning and he is greatly concerned and is scheduling her for surgery tomorrow morning. The surgery will last 6+ hours and they will be going in and detethering her cord. The dr said she looks horribly tethered on the MRI so he might not be able to detether the whole cord if function loss prevents but he will try. He said he is pleased she has not lost continence besides the few accidents as if she had lost more then she would probably never get it back. Regarding the limp and lower leg feeling, he thinks she will get that function back from surgery but if not physical therapy will work with her to get it back. They are trying to get her an early morning surgery but we won't know till they hear from OR. When we know the time I will let you all know. The recovery is not easy. She will have to lay 100% flat in bed for 3 full days (60 hours) without ever raising her head. In praying they sedate her otherwise its not going to be easy. Any suggestions on what to do for 3 days laying flat not able to get out of bed would be appreciated. Fins gonna go crazy- us too!!!

We are attempting to figure out what we are going to do with all our kids for surgery day and for the days after. Please pray for that.

I will update everyone when we know what time surgery will be. Please pray for fin and her nerves. She's super excited since Kev got here but she still gets teary here and there.

Thanks for your prayer.

Christy:)

7:30am update

Fin was taken straight from the sedated MRI to her room and slept well despite the screening baby next to us-- mommy didn't sleep quite as well as fin. The neuro team should be by soon to review her MRI and come up with a game plan. Pray for surgery quickly as this morning she seems to have lost a lot of balance- each days getting worse. Pray for fin as she's already been in tears begging to go home. She is very sad and until we know what the neurosurgeons plan to do I really can't prep her very well.

I'll update as soon as they come in.

Tuesday, January 15, 2013

Fin Is being admitted

We saw the neurosurgeon and they decided to admit her. They think surgery is probably going to happen. We have a 10pm MRI then all the neurosurgeons will read them in the morning together and make a decision on what to do. The neuro that saw her thinks they will probably do surgery in the next few days if that's what they need to do.

Please pray for fin. She's a homebody and keeps begging me to go home. She's scared to death to be here and it's breaking my heart. She's scared of being "put to sleep" and to get needles in her arm and earlier we thought they would do the MRI without sedation - hence no needles- but they just told me they are going to prep her for sedatin- iv line- just in case she Doesn't cooperate with the non sedated MRI. She's going to freak when I tell her this. She's having a super hard time so please pray for comfort and peace for her.

I'll update when I know

Er update

Fin just saw the Er doctor and he had her do a bunch of things with mobility but was mostly concerned with the lack of pain and feeling in her feet. He did this thing with a pen on her nail bed that he said should cause a lot of pain and she didnt flinch. The dr wants to order an MRI and a bladder ultrasound and is going to consult the neurosurgeon who is finleys neuro that has seen her since we brought her home. So now she is calmed down and is not crying like she was (she hates dr/ hospitals) and is making a necklace with brads. The family life lady came by and have her fun stuff to do. So now we wait for the tests and we will see. I'll update soon.

Urgent prayer needed!!!

Hi guys. As many of you know Finley has Spina bifida but has no symptoms related to her condition. One if the things we have to watch for is a thing called tethered cord. That basically means our spinal cords should float in the spinal column freely and as you grow etc. it just floats freely. In people with finleys type of Spina bifida there is fat that runs like a ribbon inside the spinal column and the cord attaches to the fat and when you grow you run the risk of the spinal cord stretching like a rope and since its attached to fat and not free floating, it will (as an example) fray like a stretched rope. When this happens the kid runs the risk of losing function (mobility, continence etc.)

When we brought Finley home they did an MRI and she looked horribly tethered in the MRI and the tossed around the idea of doing surgery right away. The conflict came because she did not show any symptoms of being tethered (her cord being attached to the fat in her spinal column) so they decided to hold off on surgery until she shows symptoms. We were always told the most risky times for tethered cord is during the growth spurts as that's when the tension is put on the cord. Some kids have to have surgeries to detether their spinal cords and about 70% of lost function is often returned but sometimes they lose the lost function forever. We were told to watch specifically for lower leg function and urine continence as the first things that often become impaired.

Finley has been growing like a weed but has always been totally without any symptoms. On Saturday we noticed that she started limping- an odd limp but nonetheless a limp. She said she didn't do Anything to her leg so we
Were kind of baffled by her limp. We assumed it would go away. Unfortunatly, each day the limp has gotten worse and last night I noticed she has wet undies in her laundry. When I saw that my heart just sunk realizing this is probably tethered cord. I then talked to Kim and she had noticed a few days ago she had leaked at Kim's house too. Then this morning kevin checked the sensation in her feet and they are essentially numb. He dug his nails into her feet to see if there was any sensation and there was nothing. All of these things made us realize what this most likely is and we called the Spina bifida clinic director and she was worried and well and since we have an HMO we had to have the primary doctor make the referral to see the neurosurgeons and have a new MRI. They wanted the referrals to me made as urgent. We had the referrals approved within an hour and I was rapidly making appointments until kevin called and said she was in a lot of pain. I mentioned this to the neurosurgery scheduler and she said that she would suggest taking her to Er and as a bonus her neurosurgeon that we always see is the dr on call so he would see her and this would speed everything up and essentially decrease the risk if lost function.

So we are in Er waiting to go back. Finley seems scared and her pain is not horrible unless she moves her leg weird. I will update everyone as I know more. Please keep her in your prayers. Specifically that she will not lose function.

Thanks guys and update you soon.

Christy :)


Saturday, January 12, 2013

Thursday, January 10, 2013

video

Friday, January 4, 2013

Camping

We just got back from a few days in the desert camping. Lots of fun with our friends. Since the boys are so into hockey and school sports we sold all their motorcycles and our toys so Kev only has a little Suzuki samurai 4x4 to drive around but we still had a great time. The boys both learned to drive a stick and then drive around the whole time we were there. The girls had a blast playing in the sand and making mud. Emery loved the mud as evidenced by it being all over her. The pics if the girls are from the back of the samurai getting ready to go for a ride with their pal Jenna and daddy. They really had fun!!!





















Thursday, January 3, 2013