Update OUCH

Thanks everyone for the emails, calls and prayers. Bean is doing so well. I am so grateful for this continued blessing of miracles in my life! :)

These pictures are from her dressing change yesterday, her incision, while BIG, is looking like it's healing well. The purple on her head is from where they marked it for the "GPS" for surgery and the redness is from the stinking "sticky" stuff that they put on to hold the dressing down. We have gone through all our adhesive remover and it hasn't take it all away of course. So changing the dressings are very upsetting for Bean. Think big sticky bandaid with extra glue on it!


Have you ever seen such a big incision for a shunt? Sheesh! Some of the swelling has gone done but it is still a bit swollen.

Bean is happy and her normal playful self but sleep has been an issue. I don't think because of pain, but because she is just uncomfortable with the dressing on and her head is starting to be itchy. Last night was the best sleep for days so I am hopeful that it will be even better today.

Please keep praying! We scheduled our follow up appointments yesterday. Next week we will have a wound check with the nurse practitioner (as well as her ortho surg. and orthotics appointments), and then we have a CT scan and NS appt. scheduled for six weeks. (Where prayerfully we will see some positive change in the syrinx!)

Gilbert waiting in Haiti is still not doing well but he is hanging on! Please continue to keep him and his caregivers in your prayers.

My grandma is still hanging on as well. She has been moved to Hospice. Some of my family is having a really hard time dealing. I must admit that if I was there I would likely be having a much harder time. All that I can do from here is to pray! And I think that is the best thing for right now. I know that they are all dealing with the decisions that have had to be made but everyone just needs to remain supportive and continue visiting grandma daily. (There is lots of family in town so that she has someone close all the time.) Thanks family. Keep praying for us all.

Many Blessings and much thanks!
Sarah

Bean... HOME :)

Here are some Angeline pictures before and after surgery. Today we have to start the dressing changes. I am scared to see what is underneath the bandages so I am waiting for my sister to get here to help me. We are also going to cut the rest of Bean's hair off... there isn't much left so why not start over! (Anyone see any cute hats anywhere, let me know, we will be stocking up to avoid the "stare patrol" in public.)

Angeline of course, is still the most beautiful baby in the world, even without hair. :)

We got to come home last night. I couldn't believe how once the morphine wore off how well she did. She started eating and they were able to finish up her antibiotics and remove her IV. She hasn't had any trouble with post anesthesia vomiting or anything. She is still getting some stronger meds at night especially and did have a low grade fever last night, but other than that, it's just tylenol for her. She is spending lots of time snuggling and watching her favorite shows on demand. Thank you everyone for your prayers. It was such a miracle to see her bounce back yesterday!! We were also graced with the most beautiful sunny and almost warm day so the drive home in the Seattle traffic was almost enjoyable.

In other news... Grace, Dom and David went with their cousins and Uncle Terry today out to my Aunt's to bury my sister's dog. They are looking for some closure and wanted to be there to have his burial ceremony and a nice hike afterwards.

Cole is still at Kelly's and enjoying some time being the "only" big boy. Lulu came home from Kelly's last night and Sophie came home from Kim's but Cole has definitely found his home away from home. I am so blessed to have such awesome family and friends around when I need them! Cole will come home tonight after going to church with his 2nd family. :)

This has been a nice way of easing back into the noise of the house and daily life madness for Beanie.

My grandma is not doing well at all. They were unable to get a feeding tube in and since she is DNR they are just keeping her as comfortable as possible until it's time for her to go. I am really missing my family in Ohio and especially my Dad right now. I wish that I was closer and could be there in person for them. I spent a lot of time praying in the past days and wondering where I would find the strength if I was faced with such decisions for my parents. My Dad is such a gentle giant, a man's man, who doesn't often reveal his softer side. But the moments in my life when he has, even from the time I was very young, were so profound and meaningful, and will never be forgotten. I can imagine that he is having a really hard time and I thank you all for your prayers for my granny and my father and the rest of our family during this time. I miss my family!! :(

Another prayer request: We have been helping to arrange for a MV for a baby from COTP named Gilbert. Dr. A. has graciously granted charity care for him and gotten the hospital on board. We have an awesome host family lined up in Texas (Abby), and we are just waiting on the last of the paperwork to come together. Gilbert has been having a hard 24 hours so please pray for him and for his caregivers. They are awesome incredible people who are doing all they can for him with limited resources... just pray for their and his strength and wisdom. Hang on Gilbert!!

A huge blessing...

I came home to a lot of email to reply to. I came across an email from a NS team in Northern CA. I had emailed them last week about Alex (see his picture below) and they left me a cell number to call them, even on the weekend. They have the NS, hospital and a plastic surgeon on board for Alex's charity care. All like that! Wow! Amazing! So we are working on the last of the logistics for Alex and the plan for his travel and host family. I just in awe at the way that things are so perfectly coming together. We do have a need for donations (link to MAT blog below where you can find a link to donate)... we need to raise $200 right now to cover the cost of a CT scan in Haiti for Alex.

We are working on MV's for several other children and the "team" has been busy the past few days that I have been gone. We have made some amazing contacts and are hopeful more children will get the surgeries that they need soon! Thanks again ladies for working so hard and with so much HOPE. It's been soulfully inspirational to see your giving of time and kindness. :)

Please watch the MAT blog for updates:

http://www.medicaladvocacyteam.blogspot.com/

Blessings and thank you again for praying!

Sarah

Bean Surgery update

It's been a really long day so I will keep this short. They did her surgery today. It went well... but it was delayed, and delayed longer and longer and longer and it was just super upsetting. Angeline is in a great deal of pain right now they are keeping the morphine going every hour and keeping her kind of out of it for the moment.
The incision was huge, much bigger than expected but they said because its so big it should heal better... think Bug's incision but bigger! The basically cut half her scalp open and folded it down... so I am sure that the pain is pretty big at this point. The 2nd catheter in the shunt seems to be working and when they put it in using an endoscope fluid shot straight out of it so they said that there must have been a lot of pressure going on from the pocket of fluid.
I will update tomorrow... please pray... it's been a long day and we have many other things going on.

My grandma was taken off life support today... please pray for her and my family. (Especially my dad, it's his Mom and he can have a very tough exterior but I know he must be hurting right now.)

Also... for my sister Nina and her family... she is helping to watch some of the kids and take care of the house while we are gone and she ran home today with Dominick and Grace to find her beloved Collie dying. He had a tumor and it burst and they had to put him to sleep.

Thank you thank you thank you for the prayers.
Blessings,
Sarah

Let the SUN shine in!!

It has been sunny here in the Pacific Northwest for the past several days. I feel like I just WOKE up from several months of gray, rainy, sad days and it feel wonderful. My children are doing school work today despite it being President's day and they aren't too thrilled about it... especially with the sun so shiny! So we are hoping to get things done around here this morning so that we can go to the park or something outside this afternoon. Lauren is just heading out the door to take Bean on a walk. Love it... love that sun.. love the thought of spring right around the corner. Such a blessing.

So updates all around:

ISAAC:

The pictures above are so funny. Isaac is trying out grapefruit, thus the look on his face of "Oh, it's so sour!" I find it interesting that he will eat grapefruit because he is a very picky eater. So funny.

Our letter to the President was sent via DHL last week and should be at the attorney's office by now. We are hoping it get's to the Pres. fast and we can have an answer for our family and for Isaac soon. If he says YES, then IBESR will have to sign out Isaac's file, if he says NO, then we aren't going to be able to bring Isaac home. Everyone is hoping that this process will take 2-3 weeks, but it's Haiti, so who really knows when we will have an answer. We are of course heavily praying for a speedy YES. And if we do get the NO, we know that the Lord's plan is already in place for Isaac and our lives and we will just see that plan to fruition. I am trying my best to learn to react to life as a bigger picture and not to react to life with so much emotion all the time. We do have a brewing back up plan in place for a family for Isaac... but we aren't going there yet with logistics because the hope is truly still alive that he may come home to our family. He just "is" SO much a Reese. I can't even tell you... if the Lord's plan isn't for Isaac to be a "Reese", I will be thrown for a loop because as it is, he is part of this family already!

ANGELINE:

Bean has some urology appointments and tests in Seattle on Weds. Then her surgery in on Thursday (prayerfully it WILL happen this time!) We will be leaving Weds. morning and the next two days will be filled with logistical madness as to where the children are staying etc. and what the plan is. I have been so blessed with ample friends and family jumping in to help out. (Praise the Lord!!) Bean has been doing great. No more runny nose and don't freak out... but she actually SLEPT the whole night in her crib last night. (From midnight or so until 7:30am this morning.) Her breathing sounded great all night (the monitor is on HIGH so we can hear her well) and her snoring was really at a minimum. Maybe the snoring was just our way of seeking the tests to find out about her spine... and really isn't going to be an issue after all? But it was a miracle that she slept the whole night. I can't remember the last time she did that! I am looking forward to getting through this week and praying that things go well and resolve the spine issues with the shunt surgery so we can avoid the decompression surgery.

HOME:

We are working on refinancing our house. We want to paint our home, get new carpet, and pay off our debt. We are about half way there and hope to have it done by the 2nd week of March. So this has been keeping us busy. We had our appraisal on Friday and we are just praying that it appraises for enough to let us get all of those things in order. Just one more thing to add to the pile of to-do's around here. (Living debt free except for our home and one car payment will be like a dream come true and with the interest rates dropped so low, we will be able to still maintain the same payment while doing this!... just praying it works out.)

MEDICAL VISA'S:

Salem and I have had four people in the past week really jump in to help out. Two are helping with fundraising and three (one of those two) are helping with finding doctors for our waiting children. We also have had some interest in people becoming host families and have made some good contacts that we will likely utilize in the future. So things are going well in this area of my days! Please pray that we are able to secure care for three children this week that we are all working very hard on. If you would like to help, just email us!

DH WORK:

Feast or famine... story of our lives. Last week Robert worked 60 hours. Today he is working during the day and then the rest of the week nights. So things at his job are picking up and that leads to some adjustments in life getting back to the busy routine. I am thankful that he has work, but it's just hard adjusting when I love having him around the house more often. (Ok... most of the time.)

Last week was Valentines Day and I got the most beautiful flowers from my honey. Robert has been pining for a new acoustic guitar that I kept telling him we couldn't afford. So I surprised him with an even nicer one than what he was hoping for and it was nice to surprise him. He doesn't ask for much of anything ever, so it was a special holiday just because of being able to fill one little wish of his without him knowing.

So that is it for our little lives. How are things in your life?

Off to get some sun!

Love and Blessings,
Sarah

So sad...

International surgeons contest Dutch euthanasia of babies with spina bifida
January 26th, 2008
From Radio Netherlands Worldwide:

Pediatric neurosurgeons from 12 countries, writing in an article in the medical journal “Child’s Nervous System,” have expressed concern over the practice in the Netherlands of actively carrying out euthanasia on babies with spina bifida.

Speaking for the Dutch Pediatric Association, Edward Verhagan rejected the international criticism, arguing that treatment should not be given to infants unless there is some hope of improvement as a result of the treatment.

The current debate was touched off by Dutch pediatric neurosurgeon Rob de Jong, writing in the same journal. De Jong surveyed medical cases and found a number in which physicians dismissed patients as having no hope, only to find later that their initial diagnoses were incorrect. In one such case, a South African child with spina bifida was denied treatment, and years later was found to be alive and leading a “reasonably independent” life. “There is no reason whatsoever for active life-termination of these newborns,” he wrote.

Verhagan was one of the drafters of what is now known as the Groningen Protocol, a Dutch document which sets out the conditions for euthanasia on babies and infants. These conditions are as follows:

-the diagnosis and prognosis must be certain;
-hopelessness and unbearable suffering must be present;
-the diagnosis, prognosis and unbearable suffering must be confirmed by at least one independent doctor;
-both parents must give informed consent; and
-the procedure must be performed in accordance with the accepted medical standard.

We have been punked!

This morning was crazy... wrapping up the lose ends to get out the door in time. We planned to get to the hospital early, so that way we will still be within the "window of time" that Bean could have clear fluids... until 11:30am. She could have milk and food until 7:30am... we tried to wake her up at 6am and get her to eat and have some milk... but she wasn't going to eat, so milk it was. Lauren, Grace and I made some bagels to take in the car, thinking that Bean would fall asleep with her apple juice and we could eat breakfast. Not so.

She stayed awake the whole car ride there and by the time we arrived at noon, two hours early for check in, she was ticked and hungry.

We got there, got the van valet parked (PTL I didn't have to park the beast there) and walked around for an hour, not wanting to check in too obnoxiously early. At 1:00pm we checked in. She told us to go ahead over to the surgery center because maybe they could get started early. :) Yeah! There's a thought!

We sat in the surgery waiting area (no food or drink allowed because of all the kids waiting for surgery aren't able to eat or drink so they don't want people doing it in front of them.) This was a good place to be and we sat for about 20 mins and Bean played with the toys etc.

Then we got called back for surgery... EARLY! Yeah!!

The nurse checked her in. Angeline cried and cried wanting her ba-ba, or some "puffs". The nurse came back and said that there had been a major emergency with the NS team and that they were running behind. She brought some apple juice for Angeline and said to give it to her but not give her anything after 2:30pm. We left to go walk around and let Bean drink her bottle. At about 3pm we came back to the waiting room and turned the lights off and tried to get Angeline to go to sleep so she might stop thinking about her hunger. (Remember she hasn't eaten any real food since dinner, last night.) We figured we had until 4:30 at least before they would start getting her ready for surgery. (2 hours since the apple juice)

Bean was very upset but did get happier when I gave in and let her crawl all over the waiting room and play/explore. At 3:15 I saw one of the NS docs. He came in to let me know the bad news: The surgery was canceled.

Ugh.

All I kept thinking about was the drive home, rain and horrible Seattle traffic at that time of day!

(AS I reached under the stroller and opened the bag of natural cheese puffs for my starving baby now giggling with delight.)

He said: "We are still in the middle of the emergency and I don't know when we will be done. So we are going to have to reschedule the surgery."

I replied: "How about first thing tomorrow morning?"

He then said: "No, that won't work. We talked about her case this morning and feel that she is a good candidate for doing microsurgery to place the catheter. Typically we blindly place the shunt catheter in the ventricle but since she has a fairly specific area of obstructed fluid, we need to place it exact."

No arguing there! All I kept thinking was, how did we get LAST on the schedule? The last child of the day after a major emergency and doctors doing "blind" placement of foreign objects on my babies brain... SURE we will GLADLY come back!

I didn't clarify if they were waiting on the microscope? Or if this was a new thing they are still training on? Or why exactly he didn't know when they would be able to do it?

He just told me to watch her for any signs etc. that she is digressing from the Syrinx and THEY will call me to reschedule soon. And yes, please ask for a morning appointment. (Praying that the delay doesn't cause any problems!!!)

So we are home. Exhausted... but our bellies are full and we made it home safely.

I will keep you all updated on when they are going to do the surgery... for sure this time!

Thanks for praying.

Love,
S

Thank you Aunt Nina

Thank you Aunt Nina for making me this very special blankie to take to the hospital with me. I love the Teletubbies and Po is so soft and sparkly. You did a great job making it. I love the soft side with the "over the hills and far away" and adore the silky side as well. Thanks for thinking of me.

Love you,

Beanie

Surgery Tomorrow...

Here is Bean on her birthday. Although she had croup and most of the pictures turned out looking not so happy... she was just thrilled beyond belief when everyone was singing Happy Birthday just to HER. It was so cute to see.

Our dear friends and neighbors across the street were feeding the birds and the kids saw. We grabbed the bread out of the pantry and some of the kids ran out in their pj's to feed the birds. Angeline thought this was too funny of course.
(You should be able to click the pic if you want to see it bigger)

This is Angeline and her diva makeover that Lulu and Lauren gave her. :)

This is Bean finishing off a bowl of vanilla ice cream.
The best part of this picture is you can see her high chair that she can now lift herself out of. Yes! I can't believe it. Yesterday I turned my back and she had pushed herself up with her arms, gotten her legs with her "AFO's" out of the small holes (IKEA high chair) and was sitting on the edge of the chair. So now she get's belted in. I never thought she would be able to do this! Amazing. And look at her clean that bowl! LOL

Bean and her big crazy hair.
We will miss your silly hair Beanie, but it will grow back soon! :)

And last but not least, Bean in the bath. "Santa's coming". That is what she says when she covers her face in bubbles.

I think we have all the plans for the next few days wrapped up finally and we will be leaving in the morning for Seattle. Lauren and Grace are coming with me. Bean is scheduled for surgery tomorrow afternoon so please keep her in your prayers. (I know you are, I just can't say that enough times I think!)

They will make sure that her shunt is working before they add the new shunt to it. If it's not, then they will replace the whole thing and add another new part. I have been doing far too much reading on non-communicating hydrocephalus and now I am armed with a boat load of questions tomorrow like I had just read some sort of neuro medical textbook. I am hoping that I don't overwhelm them! (Or annoy them.)

Dominick woke up throwing up this morning so he has been in isolation most of the day. I am feeling a little "green" myself but I am hoping it's just nerves.

I have asked Kim to update the blog while we are gone so you can all have prayer warrior updates! :)
Thanks so much everyone for all the comments, prayers, love and friendship. I have felt covered in your blessings the entire last week and you have no clue how much that means to Bean and I, as well as my whole family.
Hugs all.
S

Fields of Grace

Most of you might have noticed the above logo now on the right side bar of my blog.

http://www.untilallhavehomes.org/FOG/foghome.html

Fields of Grace is an orphanage that is being started in Burkina Faso, Africa by some dear friends of mine. (Ann, Margie, Heather and Biba from Until All Have Homes.)

I have been asked to help them in this venture, more details coming soon on what exactly I will be doing. Please click on the link to the right to visit the website and blog and to read more.

(Sorry I am doing the massive updating tonight. It's been a busy week!)

I am of course thrilled to be able to help them!

(Love you ladies!)

Sarah

Medical Advocacy Team

(Alex, Haiti, newborn with encephalocele)

Please do not copy or post pictures from here ANYWHERE without asking first! :)

Salem has started a new blog for our Medical Advocacy Team. We are getting BUSY.

Here is a link:
http://www.medicaladvocacyteam.blogspot.com/

Please book mark it and check back often.

We are now helping several children in Haiti, including Alex, his picture is above, as well as children in Ghana, Nigeria and the Dominican Republic.

We have some exciting news that we have a wonderful new person working with us who will handle the fundraising! (More info will be posted soon on the "new" blog.)

So what I am asking of all of you is, how can you help?
Think about the talents you have...
1. Pray, pray, pray!
2. Join our team!
We have additional needs to people to make phone calls, fundraise, and more!
3. Consider becoming a host family (info and applications coming soon to the medical blog)
4. Have your church sponsor a child
5. Have a fundraising presentation given to your church or group
6. Traveling soon? Let us know, we have a need for escorts
7. Spread the word, please pass the new blog onto family and friends
8. Donations... money, air miles, supplies, your time!
9. Become a good support for local families in your area hosting children
(Bring them meals, give an hour to sit at the hospital with a child etc.)


I think about Angeline and how vastly different her life may have been without the aid and blessing of a medical Visa. It literally saved her life. If we can just help more children and families, that would be so wonderful. There is such a need, and the more people we have on board to work with, the more helpful we will be. All it takes is a big heart and a little bit of time to save a life. Surely you have that don't you?

Thanks all.
Love,
Sarah

Hashbrowns with the works!

After reading the book Skinny Bitch I have gone back to my roots. :) I was a vegetarian for 12 years and vegan for 2 years. I am no longer eating meat and making progress to cut out all the "dairy" products from my diet as well. Grace is of course thrilled, and the other children are doing well with it as well. (Of course I am not forcing them to NOT eat meat, I am just not cooking it, but if Dad wants to buy meat and cook it, then they can eat it etc.) Here is one of our family favorite recipes that is so easy to do and so yummy.

It is adapted from a meal that I ate at a vegetarian restaurant in Kent, Ohio.

Hashbrowns with the Works

Typically you would "stir fry" the potatoes first in a pan with some cooking spray or a bit of EVOO. But since I have to cook so much to feed everyone, I use my WW friend Heather's home fry recipe. :) (Her link is to the right if you haven't checked out her blog.)

So scrub the potatoes, I would say about one per person you are feeding. (This is good left over too.) Then cut them up in small pcs.

Set your oven to 375F.

Spray cooking spray on a baking sheet, put the potatoes on it, also put on 3-4 ice cubes... yes ice cubes, this prevents the potatoes from drying out.

We do one tray of "plain" and one tray of "spicy". You can throw a bit of garlic or whatever spices your family likes on the potatoes.

Cover with foil and vent at the top.

Cook for about half hour, then take it out and move the potatoes around so they are getting evenly cooked. Once they are getting soft, you remove the foil so they can brown up a bit.

Meanwhile... you want to stir fry some vegetables.

Suggestions:

Onion

Red peppers

Green peppers

mushrooms

broccoli

Zuchinni

Carrots

Celery

We just try to use cooking spray when stir frying to keep the fat down.

(You can buy natural cooking spray that doesn't have the chemicals in it.)

Once you have the veges done, you just take out the potatoes that are basically "done" by now. And put the veges on top of the potatoes. Then sprinkle some cheese on top.

Stick it back in the oven uncovered for about 10 mins and it's done!

My kids like to dip it in ketchup, ranch, or vinegar.

It's a family favorite and almost everyone can pick a vege to cut up!

Lulu Hair-Doo

I am finally getting around to uploading my pictures from the past weeks. Here is a cute doo that I did for Lulu. I sectioned the hair in the back like a "pie" and put those sections into pony tails. Once that was done I braided the hair around in a circle like a crown. She loved it because it made her feel every bit the princess that she is. :)

Bean Update

Angeline celebrated her 2nd birthday on Friday. It was a pretty quiet day since she had to visit the pediatrician because she is sick again... this time with Croup! She hasn't been sleeping well but seems to be "on the mend" today.
We heard back from the NS/ENT. The ENT said that after reviewing her medical information he wouldn't do any surgery on her until her NS problems are resolved. So we canceled the surgery for this week.
On Thursday we go to Children's for her Pre-op appointment and then her surgery for the 2nd shunt will be Monday morning next week. We aren't sure right now how long we will be there for. It all depends on how she does.
If she is still sick, they will postpone the surgery.
Please pray that she is better and we can get this taken care of. (And of course that the shunt resolves the fluid in her spine as well as in her brain!!)

I am spending the rest of the week hammering out the logistics of being gone and figuring out the plan for all the other kids.
Nothing else newsy from here... I think that I am getting the cold so pray I get better too so I can be there with her!!

I am feeling overwhelmed at the moment. And as petty as it sounds I keep envisioning Bean with her head shaved and it depresses me. I know that sounds so small and minor compared to everything she will go through over the next few weeks. But she loves having her hair brushed and she always says "LONG HAIR" and pulls her curls down on the side of her cheek. She loves her sister's long hair and I know that she treasures this little feature about herself. To think of part of her head getting shaved, and then we will likely have to cut the rest off just seems like a cruel punishment on top of everything else that she will go through. When we fix her hair she says things like "Show Gracie!", "Show Daddy", she wants everyone to see how beautiful she looks. Minor I know, just really bothering me on top of the worry that this shunt won't work. Having one shunt is worry enough in my book!
Thanks for praying and I will try better to update you all over the next few days.
Love,
Sarah