Monday, July 30, 2007
Sunday, July 29, 2007
I just got a call from Bobby... they are admitting her. It looks like Ella is having a shunt failure. They will do a CT scan and shunt series today and possibly surgery today. They aren't sure why her eyes are puffy. We happened to have a picture of her from yesterday and the comparison is alarming with the puffiness. They are trying to get an IV in right now. I am off to figure out a "plan" for the week as it looks like we might be in hospital for a couple days.
We are seeing the same NS who saw Helande. Please pray for his guidance as he determines the best way to treat her. Christella is still very fussy and upset and I need to get there ASAP. Poor baby!!
P.S. I am not sure if they will remove it and then externalize it like Helande, or just give her a new shunt? I am not thinking that they feel there is a risk of infection but who knows. Update soon as I have it.
Please pray for Christella!!
This week we have had a cold going around the house, and she did have a runny nose, coupled with immunizations this week, I was only a bit concerned when she was sleepy yesterday. She was eating fine, her fontanel was soft, and she was pleasant and happy.
Last night she started to get fussy... so we were debating on whether to take her down to Children's, or to wait. We decided to let her sleep with me and keep a close watch on her throughout the night. She was up every other hour and getting fussier and her fontanel at 6am was hard and bulging and her eyes were swollen... my husband is now on the way to the ER with her at Children's.
My gut instinct is telling me that her shunt is not working... please pray.
I am in shock as I write this, it's just disbelief the things these babies have to go through. Since we never have had problems with Angeline's shunt, foolish me was naive in thinking it would all be ok for the girls too. The changes happened fast enough that they were certainly alarming. She is sleeping in her carseat now and appears stable (from my hubby who is on the road). I haven't noticed anything that looked like a seizure and she hasn't had any vomiting. She has only eaten about 2 ounces throughout the night and her appetite is definitely not normal at this point.
I will update as soon as I have one!!
Thursday, July 26, 2007
*(I hope you are enjoying the new music by the way.)
This week has been like the following story...
I was shopping at the Value Village a couple weeks back and I found this bag of wooden blogs for $4.99. What a deal! And I thought that I could entertain several different aged children with these blocks, the creations and possibilities were endless. I brought them home and within 10 minutes my kids figured out that these were no normal "blocks", these were "marble rolling blocks". You can make this ginormous creation and with it you can roll a marble through it. There are actually slits in the blocks. So for the past several weeks I have been trying to keep the marbles up high and the blocks down low. For some reason a darn marble always finds it way back into the box of blocks that now found its home in the living room, they are played with THAT much. So on Tuesday as Bean was playing with the blocks I noticed a marble on the ground. My kids know that babies can choke on marbles and they need to be kept up, but children in general can be forgetful souls, so the marble needed someone FAST to pick it up before Angeline saw it in its shiny goodness and put it in her mouth. Dominick was on the couch and fast so I told him, "Dom get that marble before Angeline sticks it in her mouth". He sprung to acting and snatched up the marble before her wandering eyes spotted it. From there we continued to watch "how to eat fried worms" and the babies returned to happily playing on a mat on the ground. A short time later it was about time for company to arrive and I see Dominick throwing up all over himself. What the...? We all just sat in disbelief. Dom has some history with throwing up, he has this intense gag reflex and always had, and has made more than many dinners go sour because he throws up at the dinner table sometimes. Since we were so immune to seeing him vomit we all just sat and waited for him to get done. I thought maybe the movie had turned his stomach sour and that is why he threw up. (The movie nearly made me throw up and I have a stomach of steel for stuff like worm eating. lol)
Once done with the puke fest and as the knock of guests coming to the door happened we heard him say... "I choked on a marble!"
So now I have to keep the marbles up from the 8 year olds too?
My goodness, thank God for that gag reflex and I hope that my son never puts a marble in his mouth again. What was he thinking?
Thank goodness it was close friends who don't bat an eye at the sight of a vomiting child. I may have offended someone.
That is how this week has been. When there seems to be something awry and I jump up and handle it, the molehill becomes a mountain and the mountain at times seems to high to climb. Does this make any sense to you? Probably not.
Let me elaborate.
A cold has been going around the house and today I broke down and took three kids to urgent care for check ups. Danny has pneumonia. Molehill to a mountain. Can I mention that Danny and Tyler leave Monday early in the morning for a cross country bus journey to OHIO for the rest of summer? Yep... hmmm?
My court case in Ohio is going to trial this fall. Please pray, and more about that later. I found out that Stan reads the blog so I have to limit myself on how much I divulge. Hi Stan! I don't blame you by the way, I know you are doing your job. It's just a thorn in my side. This one I would consider a mountain to a molehill I suppose. Watching a baby have LIFE after nearly dying that's a MOUNTAIN... getting sued for $70K + MOLEHILL. We already WON. Angeline is thriving! That is where our focus will remain. With the blessings and miracles we have witnessed!
Helande's shunt issues:
Now a mountain of questions about her future, please pray hard. She is healthy right now and doing OK and if that changes I will update right away. But there are some questions there that are concerning about her "plan" in life. HE has a plan all laid out for her already. We know. It's just HARD.
So as you can see one marble on the floor can turn into a pile of vomit.
There were GREAT things this week. I found out two friends are adopting from Liberia and that brings me great joy. My good friend Kelly and her beautiful family including two new twin daughters come home next week from Ghana!! (After many weeks there, I am anxious to see them all.) Lauren comes home Saturday!! David comes home from Camp with the "D" family on Saturday too. I have an awesome supportive extended family who is helping me with planning for court and dealing with the BS. A great woman who had paid for Helande's CT scan in Haiti mailed me $100 worth of Target gift cards for supplies for the babies. THANK YOU. And David was nominated by our church for a Youth Leadership camp in August. We are so proud of him.
And as life gets tricky and mountains form I find myself spiritually connected more than ever. I feel God's grace and greatness flowing through me like a class five rapid. :)
Counting my blessings,
Saturday, July 21, 2007
WE ARE HOME! We came home fighting Seattle traffic the whole way... last night. Danny and Tyler picked up Cole, David and Dom from our good friends house, and Kika brought back Sophie and Ella. Ahh... it feels good to all be in one place even if its just for a moment! (David is going on vacation tomorrow with the same friends and Leishan goes home tomorrow to start back to work.) We are missing Lauren still who comes home a week from today. So we are almost all here.
There are so many things going through my head at the moment that I want to be sure to get up on the blog but I know that I will need ample time to write them all. After some poor communication from the NS team, I was able via a really great nurse, to get the NS to come and talk to me and give me his undivided attention to answer all of my questions. And I wanted to also blog about the great people I met at the RMH (Ronald McDonald House) this week. Some amazing families with strong children who have overcome so much adversity. What a week it was!
Thursday, July 19, 2007
They will follow up in a month if we are complication free and do another CT scan, then requested an MRI 3 months after that. So that is the plan for now. One day at a time, right? The cyst that she has essentially is unchanged thus far. They can't say for sure if this will pose complications in the near or far future. We will continue to pray.
Helande just finished her first post op. bottle and is now sleeping peacefully. We are able to hold her as much as we want now. Bliss!! :)
Off to find dinner. More tomorrow.
Sarah and Bugs
The "cyst" in the back of her head is not communicating with the other areas. They are going to give her a basic VP shunt and the cyst needs to be monitored over time to make sure that its not getting larger or anything. They had thought that they might make a pathway from the cyst, but think its best to just leave it alone for now.
If the plan changes I will update the blog. I am looking forward to being able to hold Helande LOTS and I know she is looking forward to bottles once again. (Although I must admit she has been SO good and such a trooper!)
Wednesday, July 18, 2007
They are going to do a dye test/scope today so that they can see if the pocket of fluid is "communicating" with the rest of her brain. (I think this means if the fluid is moving like a river into another area or if it is self contained.) Once they determine this, they will figure out how they are going to do her shunt. We still don't have a date or time that this will happen at. There are seven children/babies on this floor right now with shunt issues and external shunts so things are kind of first come/most pressing, get's surgery first type of thing.
We are praying that they come up with a plan today and surgery before the week is out. After surgery they will not keep her for too much longer. Just a night or two to make sure that things are going ok.
Thanks so much for your prayers.
Yesterday Casey and his SIL Hannah came to spend the day with Helande. Leishan and I went to do laundry and our jobs at the RMH that have been neglected thus far. It was nice to have a break and we had a nice visit with friends. Kim came down and brought Christella, Lulu, Grace and Sophie to visit. They spent the afternoon and got to all visit Helande, and then Grace and Lulu stayed here to provide entertainment for Angeline who is growing more and more bored with each passing moment. (Not anymore!) It was great to see Christella who is now holding her own bottle!! AND this morning was picking up small pcs. of banana and eating them on her own. (Kim reported over the phone.) She looks great and is doing really well. (AMEN!! PTL!!)
Casey talked to Helande in creole and she was talking up a storm back to him. It was really nice to have him here and to meet him in person. He is every bit funny and laid back as I had imagined him. (For people who don't know Casey is Lori's the nurse in Haiti's brother.)
They are here injecting the dye now... and the last report is that if the "cyst" area isn't communicating then they will try to get it to communicate. More soon.
Blessings and thanks for praying!
Monday, July 16, 2007
Oh- you might have to stop the music on the left in order to be able to hear this. :)
Leishan and I are just sitting here with Bug and Bean and saw this on TV and thought that we would share. Helande is going for an MRI this afternoon so she is not able to eat and is grouchy and sad. Other than that, she is doing great today. We know that they are planning on doing three days worth of cultures on her CSF and they mentioned 48 hours for the cultures to grow, but we aren't sure if that means after the first or last culture? So the nurse is trying to find out for us.
Casey (Lori's brother) is coming up tomorrow to meet us all in person and spend some time with Helande to give us a little break. Thanks Casey!
So far the NS team said that they didn't see anything concerning on the CT scan regarding the pocket of fluid in the back of her head but we should know more after the MRI. Oh- the nurse N. just came in and said that they don't know anything about when the next surgery will be. So I will wait to see one of the NS's to get clarification on if the surgery can happen 48 hours after the 3rd day's culture or the 2nd or first... or what time line we are working with here. I am definitely getting a bit batty and need to go take a walk. I get too silly when I sit still in a quiet room for too long.
(Can I just mention that no one explains anything really well here so far. Dr. A. would take her time, draw me diagrams, pull out devices to show me, let me ask questions etc. I need that kind of specifications when it comes to things like brain surgery and I am getting a lot of blanket answers.) Praying for my patience and for more news after the MRI. :) :) :)
Thanks for all the prayers and well wishes.
Much love and thanks,
Sunday, July 15, 2007
I am not even sure where to start what an emotional roller coaster life is today Lord! Landie, who we found out is actually named Naissa, died last night. She had spiked a temp. over 106 and I got this email this morning:
"She died last night and will be buried today. We gave Tylenol and IB rotating every 3 hrs and the temp got down to 102. We gave albuterol nebulizer treatment (like for asthma pts when they can't breath) and antibiotic injections, but we couldn't get her breath under control. She needed to be on oxygen and we don't have that. Her breathing got tighter and faster until the oxygen that she was getting in her system wasn't enough to run her little body. There was also something going on with her bad eye - some type of infection or mass. She never could close that eye and could have easily picked up a bug. We think that if she would have been in better health she probably could have fought it off. I'm so sorry that this happened. There wasn't even anyone sick around her or even in the same room. I'm not sure where she picked it up. I don't understand these things, but fully trust and rely upon God's Wisdom and Ways in all things. We see this every week, but it never gets any easier. It just doesn't make sense. We want them all to live, but it's not us that chooses. I'm so very sorry."
Please keep Lori and all her caregivers and those people that loved her in your prayers. I can't even imagine how frustrating it must feel to be in Haiti and trying to provide medical care and not having what you need to save a child. Pray for all those people who loved Naissa. She is now pain free and in the arms of our heavenly father.
Helande is doing well. Feisty as ever. She has pulled her IV twice this morning and we are now just waiting on the IV team to come in and do it again. It was in her foot and as I was holding her this morning she kicked her little legs and I felt "wet"... blood!! She is now sleeping peacefully waiting. Her CSF fluid is not growing anything so far, PTL. We are praying and holding out hope that there is no infection and that she can get the new VP shunt in a couple days.
I have another prayer request. Please pray for Maria, my mother in law. She is 85 and has diabetes and might lose her foot because of an infection. She is now in hospice care and we are waiting to find out what is going to happen.
Last night we were sitting outside having a break from hospital life and we were over hearing a conversation that four women were having about freedom. They talked about how we say in our country that we are free, but truly we are never free. They mentioned having to pay taxes as one of the reasons why we aren't free. My husband was mumbled things to say in debate of the conversation but did his best to bite his tongue (which isn't easy for him to do). I challenge those women or any other people who take our freedoms for granted to walk a day in Naissa's shoes, or Lori's, or Christella's Mom's... to see what truly no freedom is all about.
Speaking of Christella's Mom, I am not sure if I updated you all yet or not, but she is 7 months pregnant. Lori just found out last week. Lori sent her with money for an ultrasound. Please pray that everything is ok with her baby. She didn't know that she was pregnant so hasn't been taking folic or prenatal vitamins. Her risk of having another children with SB or another NTD is great. Please pray that they (mom and baby) remain healthy. I want to feel excited that Ella is going to have a baby brother or sister but at the same time I feel frustrated. More updates soon when I have them.
Thanks for all the prayers. And for reading along this depressing post this morning.
Saturday, July 14, 2007
Robert is feeding Bug her first post op formula bottle right now. Her blood pressure is a bit high but she is content and happy to be eating once again.
I will try to take some pictures and upload them tomorrow. The external shunt will be in for a couple days for them to test the CSF to make sure there is no infection. Then Bugs will have another surgery to put in a new VP shunt.
The hardest part for right now is making sure that Helande stays comfortable with her pain, that she doesn't pull her external shunt out, and that we keep her at the right level at all times. She can only have the shunt clamped for 30 mins three times per day. So holding her and feeding her is hard because you have to keep her level to where they move the device. I will try to get pictures of that too so that you all know what I am talking about. Bean had the same thing at one point so I am familiar. It's hard though when you just want to lift her up without a million wires to her and snuggle her. It just takes a bit more manipulation.
Thanks for praying!
My kids are situated at settled at friends houses. THANK YOU! We have Bean here with us and Leishan is here too.
Lauren made her flight on time and is there now. :)
Blessings and thanks,
Friday, July 13, 2007
Wednesday, July 11, 2007
About the post below, yes I agree that the foster Mom should have used more caution when disclosing the little boys HIV status, but wouldn't it be nice if we lived in a world where we could just openly talk about disabilities. HIV/AIDS is now defined under the American's with Disabilities Act. It would be great if HIV/AIDS carried no more negative stigma than Spina Bifida, or Cerebral Palsy etc. It's very frustrating to think of how far we haven't come as a society in accepting all of God's people.
That was my soapbox for the day, thanks for sharing in my frustrations. :)
Bugs has slept the last two nights nearly "normal" h0urs. Both nights for stretches 6-7 hours at a time. I am so thankful for sleep! She is starting to enjoy her baby food a little more so I am certain that her belly is staying a bit more full at night.
It is HOT HOT here today. I am about to shut down the computer for the rest of the day and get the kids in the pool. Then we will all hibernate in my room where we have a tiny A/C that is really doing the job. It's 90 in the house right now, we just have no shade, and of course its the Pacific northwest, so no central air. (I am a whiner about the heat, I fully admit it.)
Five of the kids have really been enjoying week ONE of VBS. Next week they will go to VBS again to another church. They love it! This week they have an under the sea theme and they are making some really neat crafts. Friday they will do a play and have a lunch for the families. Cole, Grace and Sophie are all fisherman in the play. Lulu is enjoying her time there too but is getting confused about Moses and Jesus being the same man. Might have to dust off the Prince Of Egypt movie and watch it with her. She is such a hoot.
In fundraising news (see the four children waiting to come on MV's below), we nearly have $500 raised so far. So we just have $1500 more to raise for Lori to be able to get the paperwork, passports and Visa's done. Lori also updated her blog with a bit more information and more pictures about the children so visit Real Hope for Haiti link on the right if you want to read more. Thanks for the prayers always.
Have a wonderful hump day and stay cool!
Monday, July 09, 2007
You are going to have to stop the music on the right to be able to watch this without getting totally annoyed, sorry!
This is very important to watch (it makes me want to say bad words).I might add that this was on AOL and also there was an AOL poll attached as to whether you side with the parents, or the park owners and it was 50/50 split last I checked. SICK!! People get educated! I can't even believe that possibly 50% of our nation (represented in the poll) would agree with the park owners. This just makes me ill. Please take a moment to educate yourselves!
Sunday, July 08, 2007
So it's been two months of tired nights, countless blessings, joy and appreciation... and friends and faith. Off to get back to reality and off this reflection wave. Oh... if you have any extra prayer moments, we have some paperwork that IBESR is asking for for Isaac that will be done and on its way later this week. (One of the items has been done twice but needs redone because it was lost or not right and then we had to write a letter speaking of our family size for them to hopefully sign out his file.) Please pray that it all makes the last step and gets to Haiti safely and into the right hands quickly and that our file can MOVE. I miss my son!!!
Bugsy is just doing great. Early intervention came out last week and although I don't have the official report yet, Bugs is on track in all areas except for physical development. This is fantastic news.
She still isn't wild about eating anything but her bottle yet, but that's typical for five months old. (tongue thrust reflex)
I hope that you enjoy her pictures from the past week. What a beauty!
Salem is close to having care set up for both baby boys with cleft's... and a big miracle might happen... when I saw the picture of Baby S. with his Dad, both father and son with clefts, it really touched my heart. My older brother was born with a cleft lip and palate so I know how this affects someones life and to be an adult and not have been able to get surgery to correct your smile, would be difficult in any culture. The doc that has agreed to do care for the baby boys, has a colleague who is going to be in Haiti and might be able to do surgery for Baby S.'s father. What a blessing and a miracle that would be!
This is sweet Landie. You may have met her on Lori's blog, or Salem's blog. She was laying on a pc. of plastic and a lamp fell over and she caught on fire via the plastic. Landie will prayerfully be coming soon for surgery and treatment for her burns. We are so blessed to live in a country where we can get our children medical care when they need it. I can't emphasis enough how doing this work makes me grateful of my life and encourages me to share the blessings that I have.
I will update on these four children as we have updates. Keep praying!