First Eid

This past Sunday we celebrated the Eid al Fitr. Muslims have two main holidays, the Eid al Fitr and the Eid al Adha. The Eid al Fitr follows the holy month of Ramadan, and the Eid al Aldha follows the haj, or t he pilgramage to Mecca. On these holidays, the entire community gets together in the morning for a prayer which is followed by lots of feasting, gathering, and gift giving. It's an especially fun day for children, not unlike Christmas for my Christian brothers and sisters.

This was Yusef's first Eid! He didn't seem to have an opinion of it one way or another, and spent a great deal of the day sleeping. Oh, well someday, he'll look forward to it with glee and excitement like my other kids.

Yusef on Eid morning, getting ready to leave for the prayer




Yusef and Mama



Family picture



Eid Mubarek everyone!

We're Doin Our First Buddy Walk!

I finally got our team registered today! If anyone is interested in donating here is our team page. I'm so excited!

https://www.syssolutions.com/WichitaBuddyWalk/main/Team.aspx?FundraiserId=03ce4553-ed4f-4877-a219-bb45b999f403

For Those With a Prenatal Diagnosis of Down Sydrome

I have more than once noticed that people have made their way to my blogs while googling termination and Down syndrome. If you have found your way to my blog and find yourself with a new and scary diagnosis, I want you to know that there are thousands of women that have been in the same place you find yourself in now.

All of us in one way or another found out our child has Down syndrome, rather it be a prenatal diagnosis or after birth. We all understand the feelings of grief, the fear; And on the other side, we all share the intense feelings of love we have for our children.

Please give your chld a chance at life.

You will love this child with an absolutly pure and overwhelming conviction, one that you might not ever have imagined. This child will teach you more about compassion and humanity than you ever thought possible. If you are a religious person, this child will increase your faith in God and his perfect plan for you.

If you find yourself here in your darkest hours, please take some time to link to the blogs on my sidebars. There you will find families and children living normal lives, doing normal things. You will also find extraordinary people doing extraordinary things.

You might find some little ones with health problems. There you will find an unwavering and loyal support group. You will more often find kids perfectly healthy doing all the things that children do.

You will find children with Down syndrome lighting up the world around them.

So if you find yourself here, and you think that you cannot bear it, you can. Be strong, come to us who are on the other side. We'll support you when you need it.

Give your child a chance.




This child is a miracle. With time you will be able to see through your tears and be honored to witness the miracle that I know.

Well the Meds Aren't Exactly Working

Well we're now on the maximum dose of Keppra and Yusef is still having 0-2 seizures a day. I've been in constant communication with the Dr.'s office and he wants us to come in sooner than was originally planned. So Tuesday we'll go in and discuss what he wants us to do.

I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.

I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.

I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.

Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.

A Day in the Life

From my other blog...

Today was Nathan's first day of second grade! He goes to a magnet school whose focus is on environmental education. They get to do all kinds of cool outdoor projects and even have camping trips.
Here's him in the car as we were leaving:



I forgot to take the camera in with us as we got him settled in his classroom. Oh well, it would have just embarrass him anyway.

We had a nice downpour as I was driving back



Back to the house and the other little ones were up and ready for breakfast




Yusef had his as well. He's getting pretty good at holding his bottle!




Next is bath time




All cleaned up and ready to run our errand to Wally World for some supplies




This is how we roll



Back to the house for Dhuhr


I do a little decorating with some cheap stuff I bought at Walmart




Pleased with the results






Lunch and now time for a little cleaning




Gotta have my coffee and Mp3 player for this. I download free audiobooks from my local library's website. I'm currently listening to a garden variety serial killer suspense type thriller. It makes the chores so much more fun!

Picking Nathan up at the bus stop





Cookin' up some dinner for the family. I made BBQ chicken tostadas ala Weight Watchers from this recipe. It was really good and something different





Here's my plate. Yummy and not too calorically disastrous




This is the point in the evening where all hell breaks loose as usual. Cleaning up the dinner mess, squabbling cranky children, getting them ready for bed. The usual. Poor little Yusef had another seizure at this time as well. It's so stressful seeing this happen to your child.

Time for



I finally got them off to bed by 8:30 when a thunderstorm moves in and they all end up congregating in my bed. I love Kansas thunderstorms, but they don't go well with little ones. So I made myself some green tea with lemon and ginseng and enjoyed the storm




Finally got them off to bed and I'm curling up with my hero, Frederick Douglass.



Nighty Night all...

Alhumdu lillahi rabbi al Aalameen for blessing me with another day. Ameen.

Neurologists appointment and increasing meds

We had our first visit with the neurologist Thursday. He seemed extremely knowledgable albeit a little quirky. I've actually worked with him before at the hospital, so I was prepared for his eccentricities. Little Yusef gave him a big ol grin when he was examining him, so looks like Yusef doesn't mind his personalilty one bit.

Unfortunately, Yusef is still having seizures, although fewer. We've gone up on the meds twice now, and he's still having about two episodes a day. We went up to 2 ml's yesterday, which is double his original dose. Yesterday he had two seizures, so far today, none. We'll see how today goes and if he has any seizures, I'm to call the doc tomorrow. If need be we will add another med to the regiment, and if that doesn't work we will start ACTH treatments. ACTH is a hormone and Yusef would have to be admitted to the hospital for these. It is a hormone naturally produced by the body and has alot of side effects. I'm praying that these other meds will do the trick and we won't have to go that route.

The good news is that Yusef will outgrow these types of seizures (infantile spasms). The Dr. thinks that we're looking at 6-12 months of treatments. In the meantime, it is imperative that we get control over them because they can be damaging to the brain.

I've also noticed that Yusef is so much more fussy since this has all began. After he has a seizure he literally screams bloody murder. It's absolutely heart wrenching and I feel so out of control and powerless.

EEG Results and Starting on Meds

Thank to everyone for your kind comments and prayers! It really means alot to me.

And yes, to no surprise, the EEG showed seizure activity. To tell you truth, I'm mildly relieved, because I know sometimes EEG's will come up negative if the patient doesn't have a seizure at that time, even if they really do have an underlying seizure disorder. I was able to get the EEG done late Friday afternoon and the neurologists office called later that evening to call in a script. It was also nice to know the doc (we haven't actually met him yet, our actual consultation is Thursday) is on the ball and didn't blow us off until Monday.

So we're starting off with Kepra. I'm keeping my fingers crossed it does the trick and we're not having to constantly play with the meds to stop the seizures. I know this is a possibility though.

After I filled the script as I was driving home, I felt some tears come to my eyes. I just love my baby so so much and naturally I'm feeling quite a bit of apprehension.

He's been on the Kepra for 3 days now. It seems to be working! He had two seizures the first day we started it, but none since then. A couple of moms on the DS board at BabyCenter.com mentioned that the meds may make Yusef drowsy or not as active as usual and thereby slowing his development. I can say I've seen some very minute changes. He doesn't seem to smile and engage with me quite as much, although i can still manage to lure out a smile here and there. Apparently this is a common side effect of the meds and not much can be done about it. It's better than the flip side which is continued seizures which would inevitably lead to brain damage.

We're meeting with the neurologist on Thursday so I should know more about the plan and where we go from here. I'm assuming and have been told that he'll most likely want to do an MRI as well to see if there's been any scarring or any other anatomical issues going on.

I'll post more after our appointment on Thursday God willing.