Tuesday, July 22, 2014
He does have some needs that slow him down physically and he is somewhat small for his age, but he has a great sense of humor - as you can see from this lively picture.
Let me tell you why this little boy breaks my heart. Despite years in an orphanage, this little boy has retained hope and sweetness. It is so easy to lock yourself away, lash out and hurt others, to stop caring about those who are weak and vulnerable. So many people who have families and resources do that...look around...how many resourced, comfortable people do you see who have done that? Here, is a young boy who has not had a mom to comfort him when he was hurt. Yet, he continues to comfort and care about those who are more vulnerable than he is. Wow...what a heart.
He still has hope and he has only 4 months left. There are no crystal balls, but I imagine his life if he ages out. With his need, it will be difficult for him to find a job. Many of you probably know that there are quite a disparity between the number of men and women in China for his age group for one disturbing reason..so it seems unlikely that he will ever have a family. For some reason that breaks my heart for children who clearly have a great desire to love and be loved.
If you have read my blog, you know we have 9 children already. I would not hesitate to make him number 10, except my husband thinks I am certifiably insane and I have promised him we are done!
If you have any questions about adopting an aging out little boy please contact me, if you have an interest in this little boy...his time is so short! Please contact me and I will put you touch with his host family. Please pray that he finds his family soon! I will be praying hard for this little guy for sure!
Posted by Michelle at 5:38 AM
Saturday, July 19, 2014
This week Ulysses had the splints taken out of his vesicostomy. 2 - 3 times a day we have to insert an 18 French catheter to keep his stoma from scarring over. I am really liking the vesicostomy. When he first came home with it we had a super hard time preventing leakage. We had to change his diaper every hour and it was still sometimes leaking through 2 diapers. We started putting an "ultimate absorbancy" poise pad horizontally across his stoma site and the leaking improved a ton. He has started leaking again from the top of the diaper. I think maybe he has just gotten a little bigger and the diaper is not reaching as high on his waist. Sometimes his shirt gets tucked into the pad and just wicks all of the fluid right up his shirt. UGG. So what is the answer? I researched cloth diapers tonight. Maybe that is the answer, but I didn't see any that came up high enough or that looked elastic - y enough in the front waistband. I was thinking maybe i will try to make a belt of some sort or get a bellyband type thing that goes his waist. Maybe we can just pull out the coban and wrap that around the waistband. I think we can solve this problem pretty easily...the answer just has to present itself! haha. Anyone have any other ideas? Overall, it is totally awesome to not have the suprapubic catheter and foley bag to worry about all the time. He is very mobile and i am less worred about him clomping all over the world! He also had his initial PT with all of the measuring for his AFO's. Apparently, they had to workshop him to decide what he needs, so we will get his perscription sometime next week and then work on getting them locally. I am really excited about that. He moves around pretty good but I know he will do so much better with the AFO's. The next big thing for us to tackle is the bowel management. We have him on miralax and senna and in a box, unopened, is a cone enema. At some point, we will open it up and watch the youtube video about a hundred times and then do it. We are kind of avoiding it and talking about the week long bowel managment program at Cincinnati Children's Hospital...but we can probably just do this at home. I have 2 weeks of nights and 2 weeks off in September for us to work on it. I know once we have it figured out it will be easy peasy...we just have to start! In completely un-related news...Han was overheard saying this to the other boys last night "Y'all need to be quiet". oh my! nothing as cute as my 14yo barely english speaker saying y'all! Love it!
Wednesday, July 16, 2014
Ben loves his yellow blankie. Last years birthday cake was a yellow blankie cake. This year he wanted a swimming pool cake...translation ..he got blue frosting. He asked for a yellow blankie scooter with a yellow foot brake. His cat had kittens...two of them..named yellow and blankie.
Ben and I recently had a lunch date...just the two of us to celebrate an accomplishment of his and he is so awesome in his benjamin-ness. We had pizza buffet and he had a plan for everything...which way we had to walk to the buffet and then back to the table. I just let him be blissfully in control of all the tiny unimportant details. He was so happy. Everytime I get to spend alone time with Ben, I am always surprised at how witty and adorable he can be when he is not struggling to be in control. Of all of our children, Benjamin is the only one that could be a happy only child. I see so much of Keith in Benjamin. I cant help but love him to pieces and worry about the world breaking his heart. I also worry that we might accidently break his spirit because , people, he is God's answer to teaching me patience if you know what I mean!
Posted by Michelle at 9:16 PM
Tuesday, July 15, 2014
The cutest thing I have seen so far though is when he held her purse while she was climbing a rock wall at a scout field trip...he just patiently waited for her to finish so they could walk around and hang out. She thinks he is dreamy because he reads cool books and he knows his bible really well...he gets 100 s on his bible bowl tests. Lets keep the slow dancing out of it for now...I am not ready to deal with that yet!
I dont know the boy Alex slow danced with. I think he was from another church. I always worry about letting Alex go to camp because she dysregulates upon returning home...it is like she flips so easily back into institutionalized mode and has problems becoming her sweet family girl self when she gets home. I was hoping we wouldnt have that issue with only a 5 day camp but we have. Hopefully she will come out of it soon! I am actually really glad that Alex had a boy ask her to dance since Lily did. When lily got the valentine card and Alex didnt get one ...Alex had one of her freak out run away from home episodes after cornering lily and physically intimidating her. There is no telling how Alex might have punished lily for a boy asking her to slow dance if no one had asked Alex. This is the first time we have let the big girls do camp at the same time....it was risky but seemed to work out. I am not entirely sure I will let them go to the same
session again. We will see! Kids....especially teen age girls are always unpredictable!
Posted by Michelle at 10:17 PM
Ulysses had surgery 2 weeks ago. He had his annoying, leaky, suprapubic catheter removed...yeah! In its place...actually several cm superior to the catheter site...is a surgically created hole attaching his bladder to his skin and providing a nice big site for urine to escape his refluxing little bladder. the hope is that if we can take some of the pressure off of the kidneys (mainly all of the urine that keeps backing up into them!)...his little kidneys might improve. The urologist said we are talking about 18 - 24 months of this little vesicostomy. Now, Ulysses has some killer urine output he is definitely high output. When he first came home from the hospital we had to change his diaper (with a pad in front of his vesicostomy) every hour or more frequently to avoid having to change his clothes too. We have invested in some ultimate absorbancy Poise pads and put them over his stoma and we can actually make it almost 2 hours between diaper changes. We have been looking at switching to cloth diapers. We have never done cloth diapers before, but it might make sense for Ulysses...I have so many other things on my plate, I haven't fully invested myself in the undertaking. I have 2 weeks off in September...Imight get motivated to check into it. Any suggestions are appreciated! Overall, everyone is still doing really well. We are working on English and I am working on my patience. My kids are just so darn sweet. There are seriously not enough hours in the day! I am currently working nights and it is great because it gives me all day at home and I always plan a million things I am going to do over the week and I get about 10% of it done. I am wednesday now and I have literally not even finished the laundry. Not that it is every finished..haha! I want to spend more time just hanging out with everyone. I think I will do that tomorrow before our VBS at 6pm. I will just do luandry, pick up the house and hang with the kiddos.
It is probably noticeable from my lack of posts during my "relaxing week off" that it didn't work out that way! Well, that isn't entirely true. We had some great moments and we got some things done. Notably, We baked some brownies, some pound cake and some sweet cornbread cakes. I made dinner everynight and ate with the kids 2 nights this week (yeah that is pretty bad percentage!). We got homework done everyday for over half of the kids and Han can now write his name. We spent some good quality time in the pool (I love family time at the pool!) On Wednesday, Keith and I took Han and Ulysses up to Cincinnati Children's Hospital to the IAC and then Ulysses was admitted for aplanned 3 day admission to just get all of his complex issues evaluated. Without an admission it would have taken months to get everything done! I was kind of on the fence about the whole inpatient thing. We had only been home 10 days and it is scary to go to a hospital and have half of your blood volume drawn in labs over 3days and have everything imaged in 3 different ways. I was worried about things...as all mom's know that is what we do...worry! Thank God we decided to do the inpatient thing. We saw Urology, Nephrology, Orthopedics, PT, and Neurosurgery. We had Xrays, MRI's, Ultrasounds and more Xrays. There was muscle testing, catheter changes, and much cartoon watching by all. There was some expected bad news and some unexpected bad news and lots of plans were made. Basically, Ulysses kidneys suck. They have been bombarded with urine refluxing back from his sucky bladder for a long time and they are now sucking. The imaging looked awful even I could tell it was bad! He is on a low potassium diet now and the words Kidney Transplant have been uttered by Nephrology. No he is not in renal failure or needing dialysis or on the kidney transplant list...they just said he might need one in the future. However, it kind of freaked me out that it came up in the conversation at all. My little trooper spent 2 1/2 hours in the MRI on Friday night and we found several things we personally weren't expecting but the Neurosurgeon didn't seem too surprised by any of the findings and we will be doing another MRI in 3 months along with a dilated Ophtho exam in 2 weeks which will hopefully be the same week as Ulysses' first American Surgery. Happy Fourth of July to us! He will be having a vesicostomy. Basically, his suprapubic catheter will be removed and the pathway it has been sitting in between the bladder and the skin will be surgically left open..the bladder will be stitched to the skin so there will be permanent opening or communications between the bladder and the outside world. This will allow us to remove the catheter (yeah for removing apparatuses) and will allow more free flow out of his bladder which will hopefully take some pressure off of the kidneys. Hopefully we will be able to get measured and fitted for some new AFO's at that time too! He was a really, really, really good patient! Han visited the ophthalmologist who told us that there wasn't a correctable option for him..inother words....glasses would not help. After talking to some other CA mom's though I think we will get a second opinion from a low vision optometrist.