A Year of Seizures

It's been a year since Charlie starting having seizures. I remember clearly how scared I was that first time. My barely one year old baby boy shaking, not a ble to breathe, those minutes seemed like a lifetime of worry. Now seizures are so commonplace in our life we barely stop for one. Even on two different seizure medications twice a day Charlie still has seizures regularly.

This Memorial Day weekend, like last year, Charlie was sick with a fever. Fevers are his biggest trigger. The seizures are bigger and more numerous if his temperature goes up. Today I'm alternating between Ibuprofen and Acetimenophen to try to keep the seizures away.

Field Trip

Today was Josie's school field trip to the zoo. We had a great time. It's not very often (never really) that I get one on one time with any of my kids. It's really calm and wonderful. I wonder if this is what it's like for someone with one child. Wow.

It also makes me realize how over my head I am most of the time. People who have children by childbirth and not adoption might end up with one special needs child. I have three. I choose three. This is ALOT of work.

It's nice to have a day like today and slow down and enjoy the company of my child.

Kids these days

I haven't written much about the kids here lately because I don't know what to say without sounding like I'm whining just as much as my kids.

The kids are all having some rough times and we are just stretched thin. If it were just one of them I think we might be able to cope better. But they all are having some issues.

We're going to start seeing some professionals for them soon and hopefully we'll feel a little more refreshed soon too.

I have no energy.

Sickies

It's the second week of school. The germs we avoided this summer have been brought home to roost. Just when I thought I couldn't blow my nose one more time....it moved to my chest. Lili is at the doctor today, I think hers settled into a sinus infection.

DP & Josie who both sleep like rocks have yet to catch it. Sleep must equal a stronger immune system. I must try that sometime.

Besides bringing us all a case of the sickies, school has been amazing. I was so worried after enrollment day but not anymore. Both teachers are just wonderful. Lili's teacher has even assigned her a one-on-one aid that will help her navigate hallways and stairs and help her eat in the lunchroom with the other kiddos. This is something that we were bracing for a fight for. In an overcrowded district without funds we never thought it would be this easy to get her help. Luckily she has a truly amazing teacher who sees her needs, fills them and then lets us know. Wow. Just like how it's supposed to work. Who woulda thought.

Having a full day of school has done wonders for Jo's outbursts. Her energy has been used up during the day so she comes home truly calm and enjoyable. She actually plays quietly and imaginatively by herself in the evenings when I'm cooking and getting things ready for the next day. No more pinball of pent up energy. My nerves are starting to unfrazzle. I see the need for organized sports in her future.


Choo Choo has been eating up all the mama attention. He's made a break through in speech since he's been home by himself. At 19 months he's finally figuring out that sounds get him things and he went Helen Keller style though the house labeling everything he could with his limited vocabulary of "buh, puh, tuh, kih, dah, & mah"
He's had speech, occupational & physical therapy since he was born. I would hate to imagine where he would be at this point without such intense early intervention. He's really doing well right now and becoming such a big boy.

Choo Choo's case through DFS has been delayed (no suprise there right?) though. Even though the TPR trial was ordered in February it isn't scheduled until January of 2009 now. Why do you ask? Because his SW is on medical leave and the DFS attorney is going on maternity leave so we won't do anything on his case until they are both back at the same time. which will be oh....6 months. We thought we might have a fall adoption....HA!

Everything happens for a reason right?

Race Ya

We've been having some big discussions in the Fostermamas house lately. As we look further in relocating one big theme is coming up.

Race & Education

As transracial adoptive parents we have a responsibility beyond typical parenting. I want my kids to be smart, healthy and happy and I want them to be strong black citizens.

As we look into communities we're often judging how racially "diverse" they are. While reading an old post at Antiracistparent I began to delve deeper into my feelings on that subject. Part of the post there quoted:

Barry-Austin recalled a New York Times article from several years ago that looked at South Orange and its racial make-up (Preserving a Delicate Balance by Andrew Jacobs: May 18, 1997.) In it, the author cited the words of Professor Douglas S. Massey, a professor of sociology at the University of Pennsylvania and the author of ”American Apartheid: Segregation and the Making of the Underclass” (Harvard University Press, 1993.) Professor Massey spoke of surveys in which African-Americans respondents describe a neighborhood as ideally integrated when the racial composition is a 50/50 mixture of the two races. To most of the white people surveyed, on the other hand, integration meant more of an 80/20 mixture (heavy on the whites, please.)

How much diversity are we looking for? Is there a number I can put on it? Historically St. Louis' racial census has been 50/50....but that does not mean you can go into any neighborhood and find that diversity. Like many urban cities we are still very segregated. AA communities to the north and Caucasian communities to the south. Our lack of integrated diverse community options had us thinking that maybe we should just look into strong black communities instead.

Then I had to go and watch CNN's Black in America, The Black Woman & Family. One of the interviews was with a Harvard professor who quoted that children in undevoloped countries get a better education than black children in this country. God that makes my heart sink. I know that there is a huge gap in the resources that historically black schools receive compared to white schools. They quoted the drop out rate among black high school students as 50%. FIFTY percent. I don't want my kids to be that statistic. What parent does?

I don't want my kids to struggle, I want to give them every educational opportunity I can. Since my kids all have some special needs I know I'm going have to advocate to make sure that they already get some of the same educational advantages typically developing children receive. We're already seeing how hard that can be in a school district with no funds. (This week we enrolled the girls in the local magnet school that they were accepted in -boy that's another post)

I want to live somewhere where rich white folk pay high taxes so my kids can go to a great school. I want my kids to attend schools where the teachers are highly educated and credentialed. I want schools that have the latest technology and state of the art science labs. Typically that's a white community. Why does that make me feel so uneasy? Am I using racism and white privilege to my advantage instead of fighting the man?

A long time ago I read the book Silver Rights about one family's fight to send their kids to the local white school after the Civil Rights Act of 1964 mandated the desegregation of all public schools. I remember thinking after I read that book that I would make sure that my kids took advantage of every opportunity that they paved the way for.

But as a transracial family it's not that easy.

Keppra

Choo Choo had another seizure later that same day and after paging the Pediatric Nuerologist on call for more than twenty minutes we hung up and called our close friend who is a Pediatric Infectious Disease doctor. She was able to calm us down quite a bit and told us to keep an eye out for him getting sick (as that seems to be his trigger) and sure enough a half hour after his 2nd seizure he got a fever of 102.

Our regular pediatrician talked to his Nuerologist and they're upping his dose of Keppra. Hopefully this will mean no more seizures but it also means a lot more cranky-tantrum moments. Keppra makes him so angry. Ever seen an 18 month old hit you like they mean it?

More Seizures

I'm beginning to feel pretty akin to Owlhaven today.

Choo Choo had another seizure today, very different from his previous ones. He lost consciousness during the seizure. This one is very serious since he had the seizure while on anti-seizure medication.

However no one in Nuerology is calling me back. We have a regularly scheduled appointment next week. Don't these people know I'm going crazy.

I'm regretting selling my pack n play, co-sleeper and baby hammock. Since his last seizures came in a group I want to keep a close eye on him.

More Seizures

Choo Choo has been admitted to the hospital for tests and observations. It seems that typically febrile seizures don't repeat in the same illness and Choo has had 3 in 48 hours now.

Scared

As a parent one of the scariest things is seeing your kids get hurt. We've been through a major emergency but I wasn't prepared for this.

Last night Choo Choo had a febrile seizure. It was the longest two minutes of my life. His little body was completely tense and twitching, he was gasping for air-his lips turning blue and his eyes were rolled back into his head. I thought the ambulance would never come.

After being discharged from the emergency room we came home at 3 am to try to get some rest. At 5 am he had another one. This time only about a minute but just as scary.

The main indicator if a child will be prone to febrile seizures is family history. Something as foster and adoptive parents we have very little access to.

IEP and Special Needs

As a mama to kids with special needs I celebrate the little things. Sometimes we lose sight of the forest for all the trees though. This time it's a good thing.

Lili had her second IEP this past week. The were SHOCKED and AMAZED with her progress over the past year. They reminded us that at her last IEP she couldn't walk independently, she couldn't talk and had the skill level of a 1 1/2 year old. We've celebrated so many little breakthroughs I didn't even realize the huge jump that she has made.

Their new recommendation is an integrated classroom at a typical school. Yeah! I might have two girls in school this fall, I can't believe it.

Look at my big boy!

CJ is doing soooooo well. He is in the 75th percentile for height, which is totally a new experience for me since all my preemies have stayed tiny little things. My first boy is a bouncy baby boy in every sense of the word. He jumps, stands, falls, tries again, climbs, chases.....

Lili works within the limitations of her disability adapting the world to meet her needs....CJ works with and around his. He is such a fighter....legs don't want to bend? Must be time to start cruising on furniture. He just doesn't stop. He's growing and changing so quickly. Just look at my big boy!

A big GRRRR to the system

So I've been waiting to blog about this for a while because I was hoping that this would be resolved quickly. But that would be asking too much of a disorganized mess of a system.

CJ has cerebral palsy, strong hypertonia from neonatal abstinence syndrome and now hip displasia. He wears a hip brace twice a day during naps and all night. We will be picking up his new leg splints this week. He receives an hour of Physical Therapy and an hour of Occupational Therapy a week. He goes to CP clinic once a month at the local Children's hospital and sees other specialists regularly.

His request to be catagorized as a medical needs foster child was turned down. WTF? His SW said (and yes I'm paraphrasing) but he's so fat and happy! OMG

We now have to get even more records....which is soooo easy when you're not the legal guardian (ask Baggage) get the pediatrician and therapists to write letters and then we can try to appeal the request.

You gotta be kidding me.

Just so you know

I'm done.

CJ will be my last foster child.

The rollercoaster of emotions is too much. The worry is too much. The grief and loss is too much. I can't do this any more.

I'm tempted to give away all my clothes and supplies to the Foster and Adoptive Care Coalition's KidStore so that I really am unable to take another placement. If I decide later on to adopt (private adoption) I will buy new things that belong only to that child and don't have the memories of lost children attached to them.

There is no straw that broke the camels back. Just a realization that enough is enough.

Learning more about Cerebral Palsy

With two CP special needs kiddos in the house we're super busy. Lili (and Jo) goes to her special preschool 4x a week. Both her and CJ get OT and PT 2x a week each. We're going to start going to a special CP clinic at the local children's hospital 1x a month. We'll see a lot of specialists all in one afternoon. I'm learning more and more about CP.

In the United States today, more people have cerebral palsy than any other developmental disability, including Down syndrome, epilepsy, and autism. Although children with very mild cerebral palsy occasionally recover by the time they are school-aged, cerebral palsy is usually a lifelong disability. In most cases, the movement and other problems associated with cerebral palsy affect what a child is able to learn and do to varying degrees throughout their life.

CJ has Spastic Cerebral Palsy (stiff and difficult movement)
Lili has Ataxic Cerebral Palsy (disturbed sense of balance and depth perception)

Both of their cerebral palsy may be the result of an injury to their brain before, during, or after birth. In Lili's case, as a very premature baby, bleeding into the brain (intraventricular hemorrhage) caused extensive damage. I think in CJ's case nuerological damage was caused by toxic injuries, or poisoning, from alcohol or drugs used by the mother.

School stuff

Lili will be continuing to attend her special language preschool during the summer session and the first day is Wednesday. We've decided (budget be damned) to send Josie too for this semester. She is always so excited when we drop Lili off at school and I'm hoping she'll still be excited Wednesday.

This past weekend we went to a kids birthday party that was held at one of those big-inflatable-bouncy-things places. We almost had Lili stay home with DP because we figured she would just throw a fit and get overwhelmed. Boy did we call that wrong. Lili had an all out, no fear, more-more-more, blast and a half. Josie on the other hand was scared of everything and didn't participate at all (well except for blowing out the birthday girls candles mid-song) and was uncharacteristically shy. I'm still searching their bedroom for the alien pods because these are not my children. Who came down and switched personalities on me? LOL

CJ had his first IFSP (like an IEP but for kids under 3) meeting today. With his CP diagnosis he qualifies for any services he needs. He already has PT once a week and now we'll be adding OT once a week as well. His SW attended the meeting and told us that mom relapsed this week. More self help meetings were added to her goal plan. *sigh* I don't know if she's gonna make it. This isn't a good sign. Sorry baby boy.

Hello RAD where ya been?

Sometimes I can live my life like a normal mom. I complain that the laundry and dishes never end, I fret over birthday parties and I talk a little too much about poop and pee. But then, some days I am reminded that our lives will never be "normal".

After a pretty uneventful holiday weekend Lili had a raging meltdown tonight. Lili is a sweet little girl who is mentally about half her chronological age. She has mild Cerebral Palsy and has only been walking unsupported for about 6 months. She has a diagnosis of RAD but we have worked through some pretty rough attachment issues. I say worked through.....but it's never over.

Tonight I cleaned up feces from the floors, walls and bedroom door. She took all the clothes out of her closet that she could reach and smeared them with poo. She was unconsolable. It took forever to calm her down. After she was cleaned up I laid down with her and told her over and over again that everything was alright, she could go to sleep now.

But really I have no idea if everything is alright. I don't even know what set her off.

The Rollercoaster Ride

I haven't done an update about CJ in a while because, well everything changes daily. This roller coaster ride has so many ups and downs. I've learned not to hold my breath....but I still worry more than I should.

CJ's siblings were almost put into care but great-grandma stepped up and took them back. But this past week they were with mom at a visit again.

Parents were supposed to be starting weekly unsupervised visits. They didn't do what they needed to at the last minute. They have lost momentum and are not making much progress in their case plan.

DFS proved that mom "ghosted" her drug test. She took a substance that makes your test come back clean. They can't do anything about it but note it in the report. They can't screen any future tests to see if she's still doing this.

Mom is beginning to give up hope and asked that her mother be given custody. Grandma wants mom to "clean up her own mess for once". I get that she's not trying to enable her daughter any more, it scares me that he could spend years bonding with us and then she'll decide to step up.

Sometimes I'm really glad that we only get calls for babies. When we were first approved as foster parents I thought that the greatest need would be for older sibling groups. We are open to kids up to 8 years old, 2-3 siblings. Because I can be home with the kids we only get calls for preemie and special needs infants. The sleep deprivation gets to you ....but I don't know how I would protect/buffer an older kiddo from all these worries.

CJ has been seeing a barrage of specialist to rule out a prenatal stroke or brain bleed.
Today the letters were finally put into his chart.

C.P.

Cerebral Palsy

A Call & IEP's

Another call for a placement. Sometimes it just breaks my heart that we are needed so badly. This call was for the little one mentioned in this post back in mid February. He needs to be close to the children's hospital as he now waits for a bone marrow transplant. The call was just a message on the answering machine so we will get more information tomorrow and make a decision. It seems like too much to take on right now but we'll wait for more info before we say no to him. The fact that she's calling us means that they are having problems finding a place for him to stay.

Today we received a copy of Lili's IEP(Individualized Education Program) in the mail. In evaluating children with special needs there are a number of areas of developmental delays/disabilities that qualify SN kids for an IEP. Seven areas in fact. Lili qualified in 6 of the 7 areas:
1. Vision
2. Health/Motor
3. Speech/Language
4. Social/Emotional/Behavioral
5. Cognitive/Adaptive Behavior
6. Academic/Pre-academic Achievement

The only area she did not needs services/adaptations was Hearing. Is this a good time to mention that we're going back to the ENT to get new ear tubes in and see if all these ear infections has caused any permanent hearing impairments? Oy Vey.

....and some good news for a change.... Lili's IEP meeting in late January was the last time her Receptive and Expressive language were tested. At that time she scored 19 months in Receptive and 18 months in Expressive. She was tested again today at the language based preschool she has been attending since then and her scores were at 36 and 30 months. Those are HUGE gains in just 2 short months. Yeah Lili! Not so long ago I was dreading what starting preschool would mean. Now I can't be happier with her transition and her improvement. Yeah again!

Can I just whine for sec?

Lili has come soooo far. I know that. Developmentally, socially and attachment-wise. She really has made great strides.

But why does she still have a nervous breakdown when we go into a store? Not a fit or a tantrum....but a complete meltdown. Hitting me, sobbing uncontrollably, wailing so loud everyone turns around to see if I'm killing my child. Why? I ask her what she wants.....Do you want to sit in the cart? Do you want to walk? I once had to sit on the floor in an aisle at Target rocking her like a baby and singing lullabies for 15-20 minutes before I could get her calmed down enough to even leave. I would gladly bribe her with sweets and toys if it would make a difference.

Sensory overload? Attachment issues? Trying to drain yo-mama syndrome?

Quitters

This is CJ's foot, isn't it the cutest? He is growing so fast -10 pounds already. He's sleeping better at night in his Amby Baby and so I'm sleeping better too. He's doing well with his methadone reductions and should be completely weaned off by the end of the month.

Jo has been watching a potty video in the mornings and that has lead to her asking to go potty throughout the day. It hasn't lead to actually going in the potty, but I'll take what I can get. Lili has went potty a few times so I'm hopefully I might have two underwear-wearing girls by the end of the year. They're both very interested in TP and wiping. Last night Jo and Lili got out of bed went into my bathroom and proceeded to tear off a whole roll of TP and put it in the toilet in little pieces. I had to put a grocery sack on my hand and scoop the stuff out before I could get the toilet to work again. Yuck.

Lilia had her 3 yr check up this past week and the doctor is referring us to an endocrinologist to see about putting her on growth hormone. The thought is a little scary to me- so chemical and unnatural. Sometimes as a mom to a special needs kid I forget that our typical is not "normal". At three years old she's only 21 pounds and 33 inches. She's still wearing 12-18 month old clothes and hasn't appeared on a regular growth chart. Anyone have experience with growth hormone?

In other interesting news of note.....my mother is attempting to quit smoking. I come from a long line of raspy voiced smokers. All of the women in my family are big smokers, my mother since she was 13. That's a 60 year habit. I told her I would buy her patches if she wanted to quit and she's gone a week now! Yeah mom.

I'm a three time quitter myself. The first time I quit it lasted a few months, the 2nd time lasted a whole year and this 3rd (and final!) time it's been 5 years.