Tuesday, February 26, 2008
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!
Saturday, February 23, 2008
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.)
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.
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!! :(
Friday, February 22, 2008
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.
Monday, February 18, 2008
Friday, February 15, 2008
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.
Monday, February 11, 2008
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.
Sunday, February 10, 2008
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.
Most of you might have noticed the above logo now on the right side bar of my blog.
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!)
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:
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?
Tuesday, February 05, 2008
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.