Baptized

My 11 year old girly got baptized tonight! I am so proud of her and thankful for her love for her Savior. 

First Day of School

It's finally arrived! We are the last district in the county to start school I think. This year L is a senior, C is a sophomore and we are homeschooling this year, K is a 5th grader, E is a 3rd grader and S is a 1st grader. The little boys asked for haircuts last night and I cut E's first. It turned out alright and S kept asking for his turn. His hair is so tight and curly, it kept getting caught in the clippers. So I basically buzzed it all off. It turned out pretty short and he was so upset. I feel horrible. He cried and cried and this morning at school he wouldn't take off his jacket or hood.

Hello again!

It's been a long time.  I decided to come back to blogging, give you an update on what's new, and journal my journey.

I am still playing roller derby.  I just finished my second season as a skater, and my husband is a referee for the same league.  Right now we are currently in Las Vegas for RollerCon 2014.  We got here early on Tuesday and it's been go, go, go ever since.  I am enjoying a quiet morning in the hotel room, since we were up so late last night.  I am learning a lot and having fun!  The kids are at home with Grandma, and they seem to be doing well.

I am working part-time at a pregnancy clinic.  It's been great, but I seem to be having a hard time juggling everything at once.  I also am working on my art business, White Rabbit Arts.  I have sold several paintings this year, and am setting up a booth to sell art and crafts on Aug. 2-3rd.  I have a lot to do the week I get home from Vegas!

The kids are doing ok.  L. will be a senior this year! I can't believe it.  C. is going to be a sophomore, K, a fifth grader, E. a third grader, and S. a first grader.  I hope life will get a little easier, now that three kids are all at the same school.  E. has been going to therapy/counseling for attachment.  We found a wonderful local woman who understands attachment issues, having been adopted and gone through it herself.  She is great!

E goes swimming

Disguise

We disguised coconut milk in a glass cow milk container. The kids ate their cereal with it this morning without complaints!

school

Six kids and five schools. My mornings consist of (with lots of help from J) feeding, bathing, dressing, packing lunches and sending kids on four different buses. It's crraaazzzy. But's been so nice and relaxing to have some time to myself in the mornings the last two days. I was really needing this!

Fat lip

S. had his second trip to the ER last night, nearly a year after his first one. He was playing outside, tripped and fell right on his face. His mouth instantly gushed blood and the older kids started screaming. I remained calm, but realized, S may need stitches. I called his pediatrician and they said he would need to be seen by a specialist since the cuts were on his lips.

My friend was able to watch three of the kids, and C was able to stay longer at her friend's house. I took S. to the hospital and thankfully it was a short visit. The overall experience seemed way more traumatic than last year. You could tell S. was fearful and in pain. Poor kid. I must say, the hospital where he got treated last year was a lot more child friendly and thorough. S. did not see a specialist, but a nurse practitioner who used super glue on his cut.

Today, his lip is twice as big as it was last night, and he has a fever. He had a slight fever already from a cold, but it was not quite as bad as today. So we called the doc again and he was seen this afternoon. They said it is going to look bad, and there is not a lot they can do. They did prescribe some better pain meds for poor S. He doesn't want to eat or drink much.

updates

Dust has settled a bit from our difficult week, but things are still tense.

L. is at a counseling session right now with his dad. I was planning on going but was not able to due to childcare issues/preschoolers getting on and off buses. I wonder if he might be able to open up more with me not there anyway. He did NOT want to go. It's a pastor from our church who is a school counselor and youth leader, so I am sure L. is embarrassed and worried about what might happen.

We had a fun day yesterday with friends at the bay. We packed hot dogs, salads and smore stuff and built a fire near the water. The kids had a great time playing and the weather was mild and perfect in my opinion.

We haven't had any more foster care placements, which I think is perfect for now. We had a lot going on and I can't imagine going through that while caring for another child. I am still learning the ins and outs of how things work. I haven't received an invoice for payment yet, and I think today is the last day to turn it in. I hope I can get things figured out soon.

We are needing to plan our summer. There are a lot of possibilities for activities for the kids. But I need to come to some decisions about what to do!

Public school is in the works for ALL my kids in the fall. I am a little sad, but I think it is the best thing at this point. L. will be a high schooler, C. a jr. higher, K. a 2nd or 3rd grader (not sure yet on placement), E. a kindergartener, S. a preschooler. Wow. If there is an event in our school district, you can bet we will be there!

Sigh

Busy getting ready for an impromptu garage sale. I don't enjoy it, but we really need the extra cash to pay some nagging medical bills. Plus it will be a huge plus to have less clutter around! Hoping it's successful and sunny tomorrow and Saturday.

The Make a Wish project has become a HUGE stressor for me. I know it is not supposed to be. I think because it involves our property, some big prep work projects going on before the big day, and finding friends to help, it's been difficult. I am getting very discouraged trying to find volunteers to help for the day of May 11. It should be a lot of fun. I hope it is kind of like a big party with lots of friends, food and celebration of a wonderful kid.

Spring has yet to find it's way to our area. It was actually snowing the other day! I know I am super tired of rain, cold and muck.

Baseball has been fun for L. And J. has been putting in a lot of time helping coach when he is able. And soccer for E. was quite entertaining last night. He was more concerned about his (girl)friend A.J. than listening to the college students running the practice! Too funny.

S.'s cranium

S. had a big day at the children's hospital last week. I was all set to go, and when I woke up at 4:30 am, it was pouring rain. I was exhausted. I was dreading the two hour drive and long appointments. My sweet husband stepped in and volunteered to go instead. I was a bit nervous about having him go, just because I have always been the one there. I didn't want to be left out of the discussions or plans for S! But it was all ok. S. did great with the anesthesia. He slept a long time after the MRI, but was not fussy when waking.

The craniofacial team (two surgeons) saw S. and were running on time! The plastic surgeon came in first, and answered some questions and concerns we had about S. He will wait until next year to do the big reconstructive surgery on S's eye sockets and nose. This will also include a bone graft. Ouch.

Next the neurosurgeon came in, who said S's brain looks great. His shunt is working well, and his chiari has not changed. We are supposed to continue looking for symptoms from the chiari malformation. He will be present at the big surgery since it will be involving brain tissue.

There was some concern about S's eye. One doesn't drain due to his deformity and there is always eye crust and tears running down his checks. (even when he hasn't been crying) They are referring him to ophthalmology to do some tests and see if there is anything they can do to help.

Migraines and such

My C. has been having migraines this week. Every day for nearly seven days. Yesterday and today she has been feeling a bit better, so that is hopeful. It concerns me because it came out of no where. She has never had issues with headaches before now. She goes to the doctor on Monday to discuss this and her ADD medication. She needs to have gained weight since her last check up three months ago.

L is on his way with dad to Grandma's house. They will be leaving tomorrow morning for Florida. I am not far behind them! He is so excited.

We are preparing the back yard for the playground to be set up. We figured out we will need to move our fire pit which will be a bit of work, but it's the only place in the yard where the big set will fit. We also pulled out our ugly rotten deck. It was such a hazard and I couldn't wait to pull it down. Now J. will be working on rebuilding some stairs down from the house. When we have some more money we can build a nice replacement deck or patio. The playground has been ordered and we are thinking it will be put in early May. We will have some volunteers (anyone?) to come out to help set it up and do some celebrating too!

E. and S. had a school conference the other day. Teacher G had a lot of good things to say but also noted some of the areas that concern us too. E. will be trying Kindergarten in the fall. He will enter with an IEP and he may have to go two years in a row if we feel it's best. S. is doing pretty well, with learning classroom rules and routines. He bit a little boy a few weeks ago and we discussed that. He were also told he has a willful side and gives the teachers the stink eye often!

Make A Wish

We got some good news today. Our S. is qualified to receive a Make A Wish! It took quite a while and a lot of advocating for him, but it is starting to come together. Our doctor was able to speak with the MAW chapter person, and she explained to the doctor what criteria does qualify. It was decided that having the VP shunt does qualify him for a wish.

If there is any question if having a shunt is considered a having life-threatening condition, read this:

Hydrocephalus is almost always treated successfully with surgical placement of a shunt or an ETV; but rarely does either treatment last a lifetime without complications. A critical aspect of managing hydrocephalus is being well informed and staying vigilant about potential life-threatening complications. Most problems associated with shunting or ETV occur weeks or even years after the surgery. When things are going well, it is easy to forget about hydrocephalus and having a shunt or an ETV. We encourage you to stay alert and informed.

Knowing what symptoms to watch for will help you become more at ease. Although the early symptoms of shunt malfunction or infection in children—fever, vomiting and irritability—are similar to many childhood illnesses, you will learn to determine the symptoms associated with shunt failure in a particular individual. Adults tend to exhibit the symptoms they experienced before treatment when there is a problem. If you have any doubt about symptoms, don’t hesitate to contact a doctor. If you suspect there is a problem with the shunt, you are wise to have it checked by the neurosurgeon rather than ignore it. It is better to have a false alarm checked than to leave it unattended. Remember, although shunt complications can be very serious and become life threatening, they can be treated successfully when they are discovered early.

An estimated 50% of shunts fail within two years and 20-50% of ETVs close up within five years. Either treatment can fail at any time. Infections are less common, but still not infrequent. Be informed and vigilant. Be prepared to act quickly. Mere hours can mean the difference between a resolvable complication and brain damage or even death, especially in children.

I am so thankful for the time Make A Wish took to work on behalf of S. They didn't just dismiss him at the first stage of the application. They really cared and made many phone calls to get things sorted out.

Now we will have S's paperwork sent to two local MAW volunteers who will be meeting with our family and S. They will talk with him and try to see what his most heartfelt wish is. This will be complicated, since the whole concept is not really understood by a 3 year old. Once we asked him if he could have anything in the whole world, what would it be? He said, "a cookie!"

S. update

S. in Jan. 2011

S. at the hospital in April 2008

We are preparing for S.'s yearly MRI and craniofacial clinic at the nearby children's hospital. During that time, we will discover how well his VP shunt is working, see how large his Chiari is, and come up with a plan for facial/neurological surgery. S. was born with an opening in his skull, between his eyes above his nose. When he came to our care, he was receiving medical services from a doctor in CA. Now that he is adopted by us and on our insurance, he is seen by a team of doctors in WA. And apparently doctors and surgeons do things differently all the time in rare cases like S'. And if you ask them, they will tell you that their way is the RIGHT way.

S. had a "patch job" in his opening. The neurosurgeon used some form of medical cement and pushed it into the hole to close things up. This left S. will a strange looking scar, but much better than the large bump full of CSF fluid that was there before. The team here want to redo things. They want to remove this patch, do a bone graft from S's hip bone, and reconstruct his face. We feel this is for the best, but are nervous about it at the same time.

Now, we have decided to refer S. to Make A Wish. I contacted our local chapter, found out what conditions qualified, and sent the local contact person S's doctor's info. We waited and waited to hear back. I bugged a little. Waited more. Then asked if MAW would contact our pediatrician instead, thinking he'd be less busy. We finally heard back that our doctor wrote he DID NOT QUALIFY. Huh? I called their office to find out why. A day later his nurse called with their explanation. Basically, they don't really understand MAW's definitions for eligibility. I argued a bit about why S. should qualify, but felt it might be better to wait to hear back from the children's hospital. They have all his information and have dealt with MAW quite a bit. I contacted the social worker who sees us every visit and found out that we must have given MAW the wrong fax number. The local chapter and hospital are now communicating so it's another wait to see what happens. S's wish, by the way, is a safe play ground to play on. I really hope he gets his wish. He's been through a lot in his short little life. And will be enduring much more in the near future.

randomness

K. with S. after his surgeries in 2008

• S. is going to begin preschool on his birthday next month, right after winter break! And he is able to qualify for these services based primarily on his medical needs. He is really not delayed enough in other areas to qualify. Which is EXCELLENT news. He is such a little miracle.

• We are fighting yet another cold with K. bringing it home first. She is still a thumb sucker, and I am afraid this nasty habit is introducing all sorts of fun winter germs to our house. Also, we are trying a restrictive diet on K. this week. She has a lot of food intolerance symptoms, and I have wondered if maybe she is gluten, dairy or egg sensitive. It is hard to cut out all these foods, but I hope soon we will have some sort of idea if there is one type of food she should avoid.

• I have NOT been doing much Christmas shopping and am NOT sending cards or letters again this year. I am nearly finished shopping for the extended family, the kids are almost done (just need a few more stocking stuffers), and then something small for teachers and such. I'm thinking homemade muffins? What do you think?

• The kids have their church play this Sunday. C. has a short solo and is a narrator. K. is one of the 2o or so angels, and L. is the stage manager. Should be good times.

• We've had company the last few weeks, in the form of play dates. The idea of having another child over to add to the noise and chaos used to make me a little anxious. It still does, a bit. But I have decided to put that aside for my kids. They are really enjoying sharing their home and family with their friends. It has also blessed us too.

• I am so excited for the date night our church is putting together on Saturday! The teens are babysitting kids while parents can go out and do some shopping, or whatever for several hours. I can't wait. Not sure yet how we will spend those few hours, but it will be great!

• Thank you so much for your kind and encouraging words regarding Mercy. We are still healing and struggling through the process. I kind of feel like I did when I experienced a miscarriage. Nobody really wants to talk about the issue, and the loss is great. I appreciate your continued prayers for our whole family and for Mercy.

• Please be praying for my friend Melissa. She reached out to love and support me while I was in Uganda as she was there adopting another Mercy. She has spent her time in country encouraging other adoptive families, ministering to pregnant mothers, and shining a light for Him. She has been in Uganda since the end of August. For last few months she's been dealing with visa issues, a complicated mess. Her family at home misses her terribly. Pray for a miracle for Melissa and Mercy to come home soon.

joy

We are blessed by the finalization of the adoption of our son today! His name change is now official and I shouldn't have to spell his name during doctors appointments anymore. The last step in this whole process is still ahead of us, with the naturalization/immigration stuff. This will cost several thousand in fees, so we are going to have to wait a bit. But at least now this step is over. And the courts did not have any problems with the paperwork. Most of the originals were destroyed in the earthquake.

We went to court with our friends, and did a dual adoption together! It was nice to have some moral support, as the whole paperwork thing was a bit uncertain. We celebrated with some breakfast and went on with our busy day.

Of course, I feel like the enemy has tried to take the joy out of the day. E. had a big raging tantrum for about half the day. It was exhausting and put everyone over the edge. He has been nothing but defiant.

I could tell yesterday something was building. He was having a really hard time at church. Nothing I did make him happy, everything I did made him complain. His shirt had come untucked and was tugging at it. So I helped him tuck it in. He instantly pulled his entire shirt out from his waistband. Then I noticed his lips were chapped. I got out my new, peppermint lip balm, given to me by a friend. I applied it to his lips and said, "There, doesn't that taste nice!" And he scowled at me and said "I don't want that!". He used his coat and shirt sleeve to wipe at his lips throughout the whole worship service (which J. was leading). He wanted to sit when everyone was standing and stand when everyone was sitting. He yelled "I'm not singing" when there was a pause in the music. I was so relieved when they dismissed the kids to their children's church classes. I asked L. to take E. to his class. E. started to balk at that idea, so I took him instead. Halfway to the classroom, he started to pull on my hand. Then when I let go of his hand, he stopped walking. Then I grabbed his hand again and he refused to move his feet and picked them up, straight legged from the waist! He wouldn't go in the class room, and actually wanted to just sit and make me miss church. I allowed to have him have a little time out, but talked up how much fun the kids were having in class. They were practicing for the Christmas program next week. He was missing out. Then they started playing the soundtrack and getting out the jingle bells and he was ready to go in, running!

Today E. was fine this morning and during court. He was great playing with his friends. Then the drama started with I asked L to help put his shoes on when it was time to go. He was tearing them off his feet, curling his toes, and whining. L., being 13, has little patience so wasn't being very nice about it. But the day just got worse for E. We told him it was time for nap, since we all got up two hours before we are used to. He cried in his room. Then he started to scream. Then I got him up and had him lay down in my bed, to cuddle. I understood why he was having a hard time and wanted to give him some attention. He acted like I was going to kill him! Kicking, screaming, crying, on and on and on. The whole thing lasted about four hours. He never did nap, after all this time. I did a bit while he was in his room playing with blocks. I am burned out from dealing with him. Then the other kids... Fighting, arguing, talking back, name calling, sneaking things behind my back. Trying to kill the joy.

Praying I will find it again, and soon.

E. school update

E. age 4.

E. age 7 months, Nov. 2007.

E. has been home now for over 20 months! Wow, has it been that long already? I can't believe it! This morning I finally got around to cleaning out his backpack for preschool. In it I found his progress report. He has been attending developmental preschool since late spring, after quite a process to get him in. He is loving it and I am so glad I fought for him! I wanted to share with you the nice things that Teacher Gayle wrote about my little guy. And while you are reading it, be amazed by how far this kid has come. At age 7 months, E. weighed 8 pounds. Found at a hospital, he was severely anemic, unable to suck, sit or hold up his head. He was malnourished and suffering from kwashiorkor (protein deficiency).

E. is doing a great job at preschool! He has learned to recognize his name in print and is working at tracing and writing the letters of his name. He is able to follow classroom routines and transition from one activity to another with less teacher support. E. seems to enjoy his time at school and he willingly gives his best effort. He is interested in what others are doing and with some modeling and adult support he joins in other's activities. He is able to stay at a table and work with a teacher for 15 minutes then move to another table to work on another task with a different teacher. He is improving his fine motor skills for coloring, and using scissors. We are learning about alphabet letters and sounds using a program called Zoo Phonics. We practice the letter names and listen for the sounds in words and print. E. enjoys sharing the object in his letter homework bag. It is a pleasure to have E. and his wonderful giggle in our classroom.

Thankful day 5

Today, I am thankful for iTunes on our computer. Not only for the music it plays throughout our house since our stereo speakers blew out (thanks to karaoke and young people screaming into the microphone!); but for the hours of entertainment it provides while E. sits in front of the screen hypnotized by the visualizer feature! A teacher in service day and rainy weather are no match for iTunes. Heaven for a sensory seeking kid and a mom who needed to wash dishes and help get other school kids out the door.

Update

No news, just in case you were wondering.
Dear lawyer was not able to meet with important person today. Will try tomorrow. If he can guarantee us a favorable judge we shall go with that.

I have no idea what that means.

In other news, my baby S. is sick. He's had a fever for two days. J. took him to the doctor to rule out vp shunt issues. The doc said it looks like a virus. I feel so bad I am not with him while he feels lousy.

Speaking of sick, there are about 5 kids I am living with here who have been sharing their germs with me. I feel like I have been fighting this bug off for a week.

I am ready to get off this crazy train. Right about NOW.

my baby

My baby turns three in just a couple months. Why am I writing about that now? Because this week he will begin the evaluation process to see if he qualifies for developmental preschool, the same one that E. is in. He will also no longer be part of the wonderful birth to three program he is in now. If he qualifies, he will start going right after his birthday, but will be in the morning class. E. is in the afternoon one.

On Wednesday some people are coming out to our house to play with S. and do the beginning stages of the process. I wish I could be there to advocate for him.

Right now, S. is doing pretty good. He has excellent large motor skills and can run almost faster than K, age 7! He is getting pretty good with his speech too, which he needed help with in the past. I am not sure if he will qualify for preschool or not. But, I hope they will take into consideration how much he is at risk. He does, after all have several brain anomalies, a shunt and Chiari Malformation. He will be having surgery in a year or so too, which could set him back developmentally.

Will keep you posted. Oh how I miss my S. He gives THE BEST hugs and kisses. And I can almost hear his voice and imagine what he will shout when I see him again, "HI, MAAAMMAAA!"

First day of preschool 2010

E. had a great first and second day of preschool. He was so excited about riding the school bus. He seemed a little worried about it at first, but when the little yellow bus pulled up in front of our house, he started giggling and running toward it! He climbed in, met the driver and got buckled into his booster seat. I cried when they drove away. He rode to school and back (about 45 minutes each way) and was still excited about it the next day. He told me that he told his teacher he loves her. He made friends. He said he is learning "about how to walk instead of run", and "how to put stickers on the thing". This is going to be a year of huge growth for E., I can already see it.