August 18th Benefit

We will be having our annual Journey of Hope benefit on August 18th this year (instead of in October).  Here is the flyer :)  And yes you are are reading it right, JACI VELASQUEZ has agreed to be one of our 2 performing artists!!!  We are SO grateful and excited!!!

Another New Discovery

Yesterday, Emmalin and I went back to the St. Louis Children’s Hospital for 2 appointments. One was with her neurologist and the other was to have a swallow study done. Emmalin has never had a swallow study done and I was glad that we were finally going to be getting a base line in this area. Although I have known for a long time that Emmalin has very weak muscles within her neck and mouth, I didn’t realize how bad it was until yesterday when I saw Emmalin’s video x-ray. It showed 3 different times that Emmalin aspirated  This isn’t good for a lot of reasons!! And even though the test definitely showed that it only started getting bad the longer the test went on (as her muscles got more fatigued), this test makes it VERY clear that aspiration is no longer a possibility but a reality. I am grateful that it only seems to be really bad when her muscles are very fatigued (and not all the time). And looking on the bright side, it could get a little better if/as she starts to gain her strength back in her core, neck and mouth. For now, we just are really going to have to start watching her when she becomes sick and other times her body becomes physically exhausted (like when she throws up). It is when her body gets tired that she will be at the highest risk for aspiration to occur!!!


I would be lying if I said that I wasn’t scared, sad, disappointed, and every other emotion in the book. But I am grateful that we now have a base line!! I know that although any type of aspiration is not good, but I know in Emmalin’s case it could be A LOT worse!! We will now be meeting with Emmalin’s pulmonologist to see what he thinks about the test and to get a new “game plan” together on how to go about things from here.

It is SO exhausting mentally, physically, and emotionally to have to sit back and watch your child have to go through all of these TERRIBLE THINGS!! Why some children have to suffer in SO many different ways is something I don’t think I will ever understand.

One thing I do understand is that God is with us and He has it ALL under control. Although it is A LOT easier some times to remember this than others, I know that God will lead the way!

Almost 3 Months Since Emmalin’s Brian Surgery

Well, it’s been almost 3 months since Emmalin has had her brain surgery. A LOT has happened since my last post (sorry about that). On May 31st, we had to rush Emmalin back to the St. Louis Children’s Hospital (SLCH) because her incision got infected. We were lucky that the infection was just on the surface. From the time that Emmalin was admitted, she was put on 3 different antibiotics (through an IV) rotating every 6 hours. After 24 hours, it was dropped to 2 antibiotics. We stayed 6 nights in the hospital. When Emmalin was released, she was sent home with a PICC line so that we could continue the 2 antibiotics every 8 hours. After almost 2 weeks of having a PICC line, it was finally pulled and Emmalin was put on oral antibiotics for another 2 weeks (actually a little over 2 weeks). FINALLY on July 4th, Emmalin was able to have her first day without being given an antibiotic in over a month!

The entire month of June was a rollercoaster physically, mentally, and emotionally. Also during that time we made SEVERAL trips to St. Louis (pretty much weekly for a while), which can also be pretty exhausting on the pocket book! On Friday, July 13th, Emmalin was FINALLY released to be able to get her incision wet in the bathtub and to pull her hair back over her incision. These 2 things may not seem like a very big deal, but they were/are HUGE!! As of today, we are actually not expected back to St. Louis for an ENTIRE MONTH!!! We are SO excited!! The longest we have been away from SLCH since May 31st has been 2 weeks. I don’t think we are going to know what to do being away for that long (lol). And actually, we won’t have to go to an appointment regarding her brain surgery until October, but of course Emmalin has 6 other specialists at the SLCH and so we stay pretty busy with them also.

As far as Emmalin’s progress goes since her brain surgery:

-She DEFINITELY has continued to find ways to make it known on what she doesn’t like. (And we are loving every minute of it!)

-She still continues to move around CONSTANTLY!!

-Another really exciting thing is that now Emmalin acknowledges when someone is paying attention to her. No she doesn’t look them in the eye (she’s blind) but she shows them in some way that she knows she’s being talked to. It’s AMAZING!!

-Unfortunately since Emmalin hasn’t been able to do therapy since the beginning of April, Emmalin has lost significant “ground” with her head and trunk control. Honestly, she doesn’t have much head or trunk control at this moment, but we are hoping she will start gaining it back very soon!

             Seizure wise:

-She is still having A LOT of seizures each day. It still varies each day, but if I had to give an average I would say she is having around 8-10 a day (sometimes more and sometimes less). This is the one area that the doctors were hoping would not be this high (after the surgery), but it seems Emmalin’s seizures are still finding a way to make it to the surface.

-The time of each seizure is still averaging around a minute and a half. This is HUGE for us (before surgery they were around 4-5+ minutes). I thank God every night that her seizures are still so short!! Yes, one and a half minutes is short for us!!

-Before Emmalin’s surgery, after Emmalin had a seizure 98% of the time she would go to sleep afterwards. Now after Emmalin has a seizure about 90%-95% of the time Emmalin is still awake and able to function. This is another area we are SO grateful for!!!

We have an EEG scheduled in October. This will be our first opportunity to see what Emmalin’s seizure activity looks like in her brain after her surgery.

Although the doctors don’t consider this to be a success as far as the seizures go, we (me and Jarrad) feel that this surgery has been a HUGE success in A LOT of ways!!

                                                                   GOD IS GOOD!