Sunday, March 29, 2009
Scalp itch bubba
But for now- what the heck is going on?
They said to use Selsan Blue twice a week. We have been. It appears to be cradle cap- sort of. Then it hardens and crusts over (gross I know). And then when it flakes off- it oozes some- like clear seepy fluid. The skin on his scalp is kind of bumpy under neath all the stuff. I am just not sure if there is something else we could put on it to help him. It seems better for a day then the next morning looks bad all over again. He is itchy and miserable. It doesn't appear to be ring worm- but I do question if its also fungal in nature?
Any ideas?
Thursday, March 26, 2009
Yesterday
______________________________________
Two of my children (not mentioning any names- see pictures) broke me down yesterday.
From the mid morning time- until late afternoon- anything I asked of them- they took issue with. They wanted to argue about subtraction, doing school work, putting laundry away, getting lotion on, bathing, eating, breathing, the color of the sky, the time, what we did the day before, and what their names are. Seriously- everything was a problem for them.
It was like whine-sulk-fit-whine-sulk-drama-whine-whine-drama-complain-roll eyes-sulk-whine-complain-whine-whine-back talk-sass-whine-drama.
I have no clue.
Is this God's preparation for me to return my children to public school?
Perhaps.
And the worst part about it?
They are influencing Angeline.
(Soon to be Isaac and Bear as well.)
I asked Angeline to stop.
She laughed.
I asked Angeline and the other two to pick it up and refold it all.
Angeline said:
"I don't want to."
I explained with a serious face to her that- yes- you are- this isn't a choice- you need to help pick up the things you threw Miss Angeline!
She said:
"No- I am not going to Mom."
I told her- oh yes you are!
and then she said...
"Mom- are you being a little bit MOUCHY to me?"
Ok so now the problem was ME- not her- not them.
But Me.
Perhaps if I was taking life a little less seriously- or had become the cat in the hat- I would have been a little more understanding of the laundry throwing party that she was having. (Purely to provide entertainment to her LEADERS naturally.)
What do you do in those moments/days/times?
Any trips or tricks?
I welcome them.
Wednesday, March 25, 2009
Help
I have lost.
They have won.
Come get me.
Stay tuned for more.
UPDATE:
When I say THEY- I mean- the children (our children). They have won.
They have won.
Come get me.
Stay tuned for more.
UPDATE:
When I say THEY- I mean- the children (our children). They have won.
Sunday, March 22, 2009
Random Picture challenge
Check it out and play along!
Go to your third picture folder and post the first picture with the color brown in it.
Now back to the picture- Lena...
I have been thinking a lot lately about sweet Lena and wondering how she is doing now that she is back in Haiti for awhile with her Mama. I think we will always miss her! :(
I have been thinking a lot lately about sweet Lena and wondering how she is doing now that she is back in Haiti for awhile with her Mama. I think we will always miss her! :(
All around updates
He will be having a GI consult on account of his continuing reflux issues. He is doing better with the bloating and such on the Neocate- but let it be known that the Neocate causes the worst smelling baby gas- EVER known to mankind.
Just a reminder on where we are with Bears health care needs- he will see the urologist and orthopedic surgeon later this month. He already has other appointments scheduled through June- so for right now- we are mid progress and no end is in sight. I am curious if Dr. M. (our bone doc) will start serial casting on Bear right away? I bet so.
Developmentally he is doing well- "talking" and laughing. He loves being held and is starting to sleep more regularly so thats a blessing. He is a sweet little guy thats for certain.
Thursday, March 19, 2009
Thursday
Monday, March 16, 2009
Choices
Angeline is going through a thing right now where she really needs constant action. She wants to be in school so much- more than she even knows- its just what she needs- peer entertainment. When she isn't getting the fun time she is seeking she lashes out and tells me all sorts of fun things.
Today she has been telling me this:
"I don't live here anymore!"
When you ask here where she lives- she says:
1. With Aunt Nina and Zoe (her idol)
or
2. I live at the hospital!
Yikes.
(She did have a little too much fun at the hospital in Texas.) At least she has a great positive hospital experience where she wasn't the patient. We love that.
The bus driver can't get off the bus to put Angeline on and off the bus. We can put Angeline on the bus- but once she gets to school- there is no one to get her off the bus. As of Friday they were trying to determine if possibly the teachers aid would be able to carry Angeline on and off the bus- but as of today- they feel that carrying a child up and down stairs would be a liability. (We are talking 2-3 stairs that would be getting her down from the bus to the sidewalk.)
The bus has a lift- but the lift can't be used with a walker- only with a wheelchair. (go figure?)
We only have a walker and no wheelchair- because- why would we have a wheelchair when she can walk with a walker? Why if you broke your arm would you get a cast on your leg? So I bet you know what is coming... they want us to get Angeline a wheelchair.
Is this because of liability? Safety? convenience? Or all three?
My choice is that my child be allowed to remain as independent physically for as long as possible. I will advocate for this at the meeting on Wednesday. There is a place where I can see if we can get a loaner wheelchair that can be used on the lift to get her on and off the bus- but wouldn't it be great if Angeline could use her walker to get to the bus- and her walker to get from the bus to her classroom?
Choices are tough during these tough times. In addition to my boys- I have heard of three other family friends laid off last week. I am taking some time out each day to pray and be thankful that my husband has his job and to pray for times to get better for everyone.
I heard today that our attorney folks are having a meeting with MOI this Thursday so they will check on Isaac's file at that time. Keep on praying! :)
Sunday, March 15, 2009
Awesome
Love the big snowflakes in this pic.
Busy, active, fun and wonderful.
I can't wait to tell you more... tomorrow.
Sweet Dreams.
Sarah
P.S. We are praying for GOOD Isaac news this week, join us! :)
Saturday, March 14, 2009
Thursday, March 12, 2009
Mister Kisster
Yes- I have been calling him Mister Kisster. (I have no clue why.)
Just a short post to say that all three of my adult boys are laid off from work as of tomorrow. They all have very different plans: one is talking military, another already may have found a replacement job, and the third wants me to take him to get a "minus five degree down sleeping bag at the REI tomorrow". You can play the matching game with the adult male child- your choices are Jeremy, Danny and Tyler. :)
I guess that is what happens when all three of your adult boys work at the same place and the economy is in the toilet. Who wants to buy rope at a time like this? :)
Wednesday, March 11, 2009
It's a miracle!
It has been determined that Angeline (hold onto your hats) has a physical developmental delay and therefore she qualifies for the Developmental Preschool within our local school district. Next week we will have a meeting where they will decide which one of the three schools she will go to. (I am holding out hope for the one that is actually ADA accessible!)
Thanks so much for your thoughts, prayers, and knowing many folks have "our back" makes such a difference. We need to be sure that all of Angeline's needs are met within the IEP- and that the school she is placed in can fit her needs. Once we have all that figured out (hopefully within the next two weeks)- Angeline will start preschool four mornings a week.
Keep the situation in your continued prayers.
I feel one mountain has been crossed... with knowledge that there are more to come.
Blessings!
Sarah and her school girl Angeline
Check these out

Tuesday, March 10, 2009
ZZZZZZZZZZZZZ
I am about to go to sleep, but thought that I would do a quick post.
With no picture.
This is almost painful to do.
My dear husband worked in some heavy machine today that shook a lot and he is having terrible back pain. The "guys" at work thought that maybe his back might hurt too badly to come in tomorrow for "more of the same". If his back hurts really bad in the morning- I just might get out of the crack of dawn drive to Seattle for doctors appointments with Bean and Bear.
(And Lauren, Sophie, Lulu and Dom in tow as well.)
Because dear husband would be able to take them right? :)
(Not that I am actually asking for prayers for continued back pain at least for the next 12 hours for my husband. Nothing excrutiating or anything like that at least!)
OK this is a terrible post- I am just really tired and need to get to sleep to prepare that it will be ME going to the appointments tomorrow with the little ones. I should be packing the diaper bag to avoid having to do it at 5am- but no- I am here blogging away.
I heard today that someone might be able to check in and know something about Isaac's file next week. So please keep those prayers coming.
Bear got meds for the reflux and is having some reflux induced squeaking coming from either his larynx or trachea. This little guy is just still fighting and has been every day of his little life. Basically the GERD caused some irritation of his throat I am thinking and that is putting it in simple terms. We are hoping that maybe one of the big docs at Childrens might be able to pop in and see him tomorrow while he is visiting with Nutrition and having a CT scan.
Also... he is now 12lbs 4 oz and 21 inches long. (Nearly round but oh so adorable!)
Sweet dreams. TTFN.
Sarah
With no picture.
This is almost painful to do.
My dear husband worked in some heavy machine today that shook a lot and he is having terrible back pain. The "guys" at work thought that maybe his back might hurt too badly to come in tomorrow for "more of the same". If his back hurts really bad in the morning- I just might get out of the crack of dawn drive to Seattle for doctors appointments with Bean and Bear.
(And Lauren, Sophie, Lulu and Dom in tow as well.)
Because dear husband would be able to take them right? :)
(Not that I am actually asking for prayers for continued back pain at least for the next 12 hours for my husband. Nothing excrutiating or anything like that at least!)
OK this is a terrible post- I am just really tired and need to get to sleep to prepare that it will be ME going to the appointments tomorrow with the little ones. I should be packing the diaper bag to avoid having to do it at 5am- but no- I am here blogging away.
I heard today that someone might be able to check in and know something about Isaac's file next week. So please keep those prayers coming.
Bear got meds for the reflux and is having some reflux induced squeaking coming from either his larynx or trachea. This little guy is just still fighting and has been every day of his little life. Basically the GERD caused some irritation of his throat I am thinking and that is putting it in simple terms. We are hoping that maybe one of the big docs at Childrens might be able to pop in and see him tomorrow while he is visiting with Nutrition and having a CT scan.
Also... he is now 12lbs 4 oz and 21 inches long. (Nearly round but oh so adorable!)
Sweet dreams. TTFN.
Sarah
Sunday, March 08, 2009
Random weekend thoughts
We are praying for good news and movement of Isaac's file soon.
We are beyond ready for him to come home.
I ordered the CD's and videos that he loves: The Cedarmont Kids
Below is an adorable picture of Isaac dancing...
I can't even express how much I miss my son.
There are no words...
I am feeling slightly more prepared.
We have five doctors appointments, one CT scan, one OT for two kids, and "normal" school and life this week. AND spring soccer is slowly starting for four. (David has practice three times a week.) Cheers that he can ride his bike to practice! Yeah!!!
Here is one of the cookies we made: YUM
All is OK with those.
That was the last step in her "speech" evaluation issues.
Thumb sucking is cute but not when you seven and have speech issues because you made your mouth and teeth grow funny because your thumb was in your mouth all the time. (Her palate is really high up and her teeth won't even come together in her mouth.) We will go back to visit the speech therapist in April and possibly start speech at that time. Our wonderful family doctor spent some time talking with Lulu and I. We set up a positive reinforcement chart for her to stop thumb sucking. We are on day three and so far- I haven't seen her thumb go in her mouth one time. Yeah!! (More on the chart soon if its a success.)
Can you believe it? We can't!
We are waiting to celebrate his birthday until later in the week or next weekend.
Dad is taking Dominick and some of his siblings
snowboarding with a lesson for a big birthday treat.
(Along with hopefully some friends of the family.)
Then we will have a big dinner and cake when they get home.
In other news: Bean and Bear are at the doctors right now with Dad.
(more about that later too)
Have a happy Monday tomorrow.
Have a happy Monday tomorrow.
Love,
Sarah
P.S. Jeremy made it safely back to town from Mardi Gras- I forgot to update that!
Sarah
P.S. Jeremy made it safely back to town from Mardi Gras- I forgot to update that!
Saturday, March 07, 2009
Church
His first time to church- and he did a great job.
(Much better than the movies that came later in the week.)
We are waiting for a shipment of Neocate to come in. He seemed to do better on it than all other formulas. We have been out of it since last Sunday evening and we are really hoping that it shows up today. (We thought fed-ex would have it here yesterday.)
Baby steps- we are getting there on sleeping, skin rash clearing, and bottom healing. Bear is talking up a storm and we keep thinking that we hear him saying words already. (Our home makes babies really verbally advanced with their language skills. Didn't you know?)
Have a wonderful weekend. :)
Thursday, March 05, 2009
Preschool update- making calls!
(What they were going off of was Angeline's medical records and a social/emotional/adaptive evaluation that I filled out.)
I had several dear, wonderful intelligent friends email me, call, and comment saying- well maybe the developmental preschool isn't where you want Angeline? Maybe its not the LRE- or Least Restrictive Environment for her to be educated in.
If you don't know much about special education, or the law- please take a moment to be educate on FAPE (Free and Public Education) and on what LRE means http://en.wikipedia.org/wiki/Least_Restrictive_Environment
Angeline is entitled to an education where she is able to learn to the best of her ability in the least restrictive environment. For her, being that her delays currently are physical (she is fairly new to walking with her walker and doesn't always find it the easiest way to get around- meaning she crawls a lot) and she has some adaptive/self help delays (dressing and undressing herself) and of course her medical issues and then there is the toileting issues.
The school was feeling as if Angeline doesn't qualify for special education services because none of those delays will affect her education. I of course disagree immensely.
The biggest issue for myself and for our doctors is that Angeline is at ENORMOUS risk for having learning difficulties and future delays. She is actually part of the DDD (Division for developmental disabilities) and we have a handicapped parking placard- because ANGELINE IS DISABLED. Let's not sugar coat it- and I hate labels as much as the next person- but seriously folks- we need to give Angeline a leg up and a push forward ahead of her peers because her risk factors are TOO great.
I understand that the developmental preschool might not be the LRE for Angeline. But the MOST restrictive environment is keeping her at home, with no special services. (No OT, PT, etc.)
I have spent this week exploring our other options. (Typical preschool with therapies outside the home and classroom.)
Let me just jump to a story for you... one that upset me so much.
I know of a little girl with Spina Bifida who came to the US on a Medical Visa. She returned to her family in Haiti. She isn't able to walk- and her family doesn't have a wheelchair- so her Mom has to carry her around everywhere. This was OK when she was younger/smaller- but now that she is bigger and older- its gotten more difficult. The Mom wanted the little girl to be able to go to school. In Haiti- Kindergarten- which starts at age three and lasts several years- is a really BIG deal. The Mom took the little girl to school but because she wasn't able to get around like the other kids- it made it hard for her to be there. The bigger obstacle for the school was that she "wet" and "soiled" herself. She wasn't using the toilet like the other children- of course- this little girl will forever wet and soil herself because she has a neurogenic bladder and bowels- she can't feel when she goes to the bathroom. With some disposable diapers- the little girl might be able to go to school- and perhaps her Mom could come during the day to change her daughter and maybe a jogging stroller or durable wheelchair would be an option for her mobility.
This story bothered the crap out of me. It killed me to think of that Mother wanting everything for her little girl. Wanting her to have all the small bit of chance, hope and opportunity that all the other children her age have. Wanting her daughter to feel normal, to make friends, to play with her peers, to learn and maybe someday be blessed enough to read. The shame that her Mom might have felt not being able to explain and make others understand why her child wasn't potty trained made me so sad for her Mom and for this little girl.
I felt angry at the school and angry that the people around weren't able to "fix" it and angry that Haiti was "behind" in the treatment of people with disabilities. I thought about the little girl and what her life might have been like here- what her opportunity would be like here. Of course her life here would be better with regard to school and her future life. I imagined her sitting in her four walled "home" and how when the light would peer in from the outside she would be there sitting on the floor, dragging herself around in the dirt ground of the inside of her home, and she would hear the kids laughing outside and playing and she would long to be out there to- for her legs to work and for someone to just treat her as an equal. Because you see-her mind works just like yours and just like mine- but she can't get her legs and her bladder and bowels to work because she can't feel them.
I thought if the school and if the teachers there only knew the life that this little girl has had in these three short years maybe they wouldn't be so fast to turn their back on her. Maybe they would have compassion, love and a "soul"- because anyone that would not allow a child the same opportunity because of her disability- of course was a soul-less human being.
This is the way that I thought until today.
Then today I was that Mom, and my daughter (my perfect God created amazing Angel girl) was that little girl.
And we are here- in the most wonderful country in the world- the United States of America.
We are no more progressive in our treatment of people with disabilities than Haiti on many- many levels.
I had left messages at the preschools (traditional, some private, some public, some church (aka: Christian), some Montessori etc.)- within 15 miles of my home. As they called me back... I felt more and more ill and depressed.
This is how the conversation would go over and over:
Me: "I am looking for somewhere for my child to go to preschool. Her name is Angeline and she is very social and very smart and she happens to have Spina Bifida."
School: "Spina Bifida- I don't even know what that is!"
Me: "Spina Bifida means for Angeline that she uses a walker to get around."
School: "Oh... I am not sure if we have room here for a child with a walker."
Me: "Well if you did have room would you consider her?"
School: "Perhaps- I would need to talk it over with some people."
Me: "I should also let you know that Angeline can't feel when she goes to the bathroom, she wears diapers and will long term."
School: "Oh- well we don't have anywhere to change diapers. It is our requirement that the child be potty trained before they are allowed to come to preschool here."
Me: "Wouldn't that requirement be kind of strange for children who can't feel when they go to the bathroom?"
School: "Look- we just don't are not going to be able to accommodate your child here."
Me: "OK well thanks for your time."
CLICK. We hang up.
______________________________________
So if Angeline can't go to the developmental preschool and she can't go to any other preschool like a typically developing child would- where can she go?
It was time to make some phone calls. Advocacy groups, the state disabilities board etc.
I am a mother on the war path. Look out.
I am exhausted from having to fight all the time with people for something that my child is entitled to.
And if worse comes to worse- I will start my own damn preschool.
My child WILL NOT be left behind.
THIS.IS.SUCH.A.LOAD.OF.CRAP.
Wednesday, March 04, 2009
Craigs List... love it!
Guess what we found on Craigs List?
A Tumble Tree House
(I have wanted to buy this for a long time- but the price was keeping me away.)
And its still sitting in the center of the living room...
then it will find its new home downstairs soon!
After buying the tree house we were still $20 ahead after saving on hair cuts- I love that.
(According to my children.)
So when you come to play- you will know the rules.
Tuesday, March 03, 2009
Little Man
I was so thankful because I am missing him so much.
The picture above is of Isaac and Elijah.
(Isaac is really getting TALLER.)
Elijah is one of Isaac's best buddies. They have lived together for most of their lives.
Kim and Jeremiah- our good friends-are adopting Elijah.
Jeremiah is in Haiti right now picking up Elijah- his adoption is done.
We are so excited for Elijah to get to go home.
We are so sad that we aren't there too.
Throughout this journey- even though our referral for Isaac was 9 months- "one pregnancy"- before our friends referral for Elijah- he is coming home first. Each time there has been a delay for us- we have talked about God's plan and how it might mean that Isaac's homecoming was delayed because God wanted us all to travel to Haiti to bring our boys home at the same time.
Then near the end Elijah had a delay and once again- we thought that it was God's plan- for the boys to come home together. We all still believe that Isaac isn't far behind. But we need your prayers. Please keep on praying Isaac home. The thought of him there- with another one of his best friends- "his brother" leaving- just about breaks our hearts. We are deep in prayer this week for movement of Isaac's file OUT of MOI. Please join us.
We rejoice in each orphan that is orphaned no more.
We just want our son home- we are sure that you understand.
Please pray for a smooth transition for Elijah and Isaac as they part ways-
hopefully- a parting that is going to be ever so brief. :)
Elijah + Isaac + Colin = BFF
Sunday, March 01, 2009
I'm So Glad
Even though you did the nasty at church.
(No not that nasty you dirty birds- a completely different kind of nasty.)
The kind of nasty that "he" (my honey husband) did at church has to do with donuts.
Each Sunday after church the missions team sells donuts.
Of course since we want to support the missions and we like to sugar up our children with bad foods- we buy the donuts when they have them- or WHEN they have ENOUGH of them left.
It typically takes us a bit to get out of church and pick up the children at the classrooms- by no means are we making donuts a priority- if they are there great- if not we don't worry about it.
Well in the midst of rounding up the herd of children- one of them had checked on the donut situation and came to whisper- "They don't have enough left- there are only four."
Certainly since we had our crew and a cousin- we were not going to be doing donuts. Dominick ran out of class and up to me- what I assumed was right in front of my honey husband- and said:
"Are we going to get donuts?"
To avoid an argument with Dominick (quite the deliberater)- I just said:
"There are no donuts- we aren't getting donuts today."
My honey went over by the donut table a good 50 feet away to look for Rick and Darla (Lena's escorts back to Haiti). They hadn't met Bear yet- so my honey wanted to be sure that they had a chance to meet Bear. And who would come walking back over from that donut table licking his lips from the chocolate frosting and in his hand a half eaten donut other than:
My honey.
Our children's jaws dropped and Angeline said:
"I like chocolate Dad."
My blood was boiling- had he not heard the entire conversation that took place in front of him? Now we were going to have to get donuts on the way home.
(OK let me interject here- there are times when Mom and Dad are privy to a special treat without the kids partaking from time to time- but the donut thing- is very much one of the kids special things. Please don't think we are indulgent parents who can't say no. Fair is fair on the donut front at our house.)
So we bought the last three donuts (Dom, Lulu and Angeline)
And stopped at the gas station for a box of donuts for all the other children.
No problem...but... it was still annoying.
So who would it be that was still annoyed once we got home?
Me of course. Sometimes I just can't let things go- one little annoyance and you breathe the wrong way- I will notice. This is a definite personal flaw. Normally I am pretty laid back...
But honey. I am so glad that I was able to get over it- and then you got over it... and we were able to communicate and escape from life for a bit today. I'm so glad that when we decided we would go out for a date- you just let me chose the place... lap swimming. And I'm so glad that you knew that it was truly what I wanted to be doing (swim and pray, pray and swim) and that it wasn't anything personal because I knew it was probably the last place you would want to go after going there just a mere 40 hours ago. But I'm so glad that you just let me have my way.
And when we were on our swim date I am so glad that you didn't pass me lap swimming and you let me feel faster. I am also so glad that you only made it 1/4 of the number of laps I did so that I could feel like a really great, fit and healthy swimming mama. (Whose counting laps anyhow right?) And I'm so glad that you made some "guy" friends and spent the rest of the time nearly breaking your neck on the spring board diving in all sort of freaky ways. And I'm so glad that your never too mature to not do belly flops, cannon balls and jack knives. That's my guy.
I am also so glad that you offered up your brush to me when you saw that I forgot mine. Even if your brush was just your hand. And I am really glad that you agreed we would come home and eat home made stir fry for dinner instead of going out. (Since I forgot my brush and your hand wasn't working out so well for my messy hair.)
I am also so glad that on the way home you shopped with me at Target for baby needs and then took me to the new food co-op and I was so glad when you got yourself a container of HOT salsa Mama and a piece of Mexican chocolate cake (made with cayenne and cinnamon) and then was particularly glad that you told everyone you had the most "masculine and manly cake available."
I am most glad that after so many years- we still have a spit fire relationship. Full of passion, love, far too much sillyness and fun, and at times obnoxious tendencies, and of course a heated debate or disagreement, or annoyance here and there too. I am glad that we know how to get through it, get over it, and grow from it. You get me- I love that.
Love,
Your honey
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