And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Wednesday, June 29, 2011

One Fish, Two Fish, Red Fish, Blue Fish....SUSHI!!!!

So, many are coming for an update!  Before that, we want to provide you with some pics of Critter with her newest thing...REAL FOOD!!!  She has really become a natural at eating some solids and she really does look forward to the time of day that she gets her solids.  We first tried carrots, and then had some sweet potatoes, and this week she has had green peas...YUM!  Anyway, as you see, she really enjoys her food!

Pierson's first bite of food...carrots!!


YEA!!!!  



Update:  So, as you might know we had to put M in the hospital yesterday as she was not doing well with her seizures.  The doc decided to intervene with medication and, Praise the Lord, she has not had a seizure all day today.  Around five this evening the doc came by to follow-up and give us a plan of action.  

Ultimately, her goal while we are at the hospital is to stop the "status" seizures (M was considered to be in status on Tuesday-recurrent seizures in a 30 minutes window)...beyond that she is not too sure of what to do next.  So, together, we came up with a plan.  Long range, M will be off the diet.  Not because it hasn't worked, but because the potential treatment that could cure has somehow prevented the diet from working for the last two months.  So, it appears that we now need meds to control the seizures.  However, this has been a major dilemma in that all of the meds tried in the past, with the exception of IV meds, did not work.  So, we are working on finding a solution to that, as well.  

Bottom line, M has not had any seizures since starting the IV meds last night.  The docs original plan was to bring us back in to the hospital for a minimum of three days to begin a slow titration off the diet and an increase in meds.  Then, three weeks after M was completely off the diet and on meds alone, start the IVIG treatment again....

Obviously, we want what is best, but we were able to spend more time with the doc and go through some logical reasoning as to why we thought we might be able to safely come off the diet at this hospitalization; re-introduce meds; and not have to worry about another possible week stay at the Baylor Ritz Carlton Downtown Medical Center-  Ritz added for emphasis....

After making sure her malpractice insurance was up to date, she agreed and actually prescribed M something that we hadn't experienced or even considered in over two years....









SUSHI!!!!


That's right!!!  M got to have her very own sushi party!!!!  Wow...now before we get too excited, the doc was very concerned about the potential for seizures to come back, but she felt that if we were coming off the diet, why not go all out (this is the one thing M has said she's missed the most since starting the diet)....okay, maybe that was some of our encouraging.  Anyway, at the time of this post, all is well so far, and M is very full and satisfied with something she has greatly missed over these last two plus years!

Please continue to lift M up in your prayers as we transition to meds and pray that she would remain seizure-free whether on IV or oral meds and that we can get back on the IVIG treatment that will eventually cure M for good and most important of all....

M can continue to be a great mom to Critter, but even more, the mommy she desires to be to Critter!!!  Praise God for a good day!  To God be ALL the Glory!!!

Stay tuned for updates!

Tuesday, June 28, 2011

Hospital, Seizures, Veterinary Hospital

Well, we're back in the hospital!  As most of you know M's seizures have continued to increase and for the most part things have seemed out of control. Specifically, we have had a rough week where just in the last five days M has had 40 seizures...yes, an average of about 8 per day.  This morning was especially rough.  It began after midnight around 1 AM as I awoke to find M on the floor next to the bed having a seizure.  Getting her back in bed she had another around 2:30 AM.  She then received some much needed rest and awoke at 7:15 and had a third seizure, followed by another just ten minutes later. 

The treating Neuro has wanted us to take a "rescue med" to break the cycle in times like this, so we did.  We then had a wait and see attitude before we decided to call our Neuro.  After two hours of reprieve, M had her fifth seizure for today and we took the "rescue med" again.  This time a call to the doc was made and it was determined that M should be admitted into the Epilepsy Monitoring Unit for evaluation and intervention as the Neuro would begin M on and IV dose of medicine.  While certainly not anyone's desire to have medical intervention, certainly it is necessary. 

The plan of action is to monitor M through Friday at the hospital and give her IV meds to see what impact that has on her seizures.  As of right now we are holding at seven seizures for the day and should receive meds any minute.  Critter is continuing to receive great care and attention and it is very comforting to know that she is in good hands while we're back in the hospital. 

We'll continue to post and send updates as we can.  Please pray for M's physical healing, wisdom for the doc as to the direction we need to go, obedience on our part in what the Lord is telling us to do (that we would truly hear Him and His voice).

As if today wasn't enough-  Some of you know that one of our precious pups has seizures.  We are not quite sure what happened but on Monday morning around 4AM our oldest pup was panting heavily and was just not right...assuming he might have had a seizure we gave him an extra dose of his meds, he later settled but was just not right the entire day.  In addition he did not touch a drop of his food.  Yesterday evening we gave him some food and unfortunately had to give him the Heimlich maneuver promptly as he vomited up the food.  As this morning progressed, he was still the same and while we are in the hospital he is in his own hospital at the vet and will be staying overnight.  As of right now, a blockage somewhere in the digestive trac is suspect.  We'll keep you posted on him too!

Thanks for your prayers! 

Wednesday, June 22, 2011

Rollin'

Though she has done it for everyone else when I'm not looking for the last week plus...

I got to see Miss P roll over for the first time today!!!!!!  What an absolute joy!!!

Sunday, June 19, 2011

Waiting, not fainting

Dear God, Your Word says "those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" (Isaiah 40:31). Please renew my strength; help me to run this race of life and live for you without becoming weary; help me to stand for what's right, to walk forward and not faint. Thank You for Your promises. Thank You for lifting me up and sustaining me. In Jesus' name. Amen. 

This was the prayer in one of my recent devotionals.  Boy is it ever the cry of my heart.  It has been a rough week.  I had eight seizures on Tuesday.  I finally gave in and took a "rescue" med to stop the seizures.  I didn't have any on Wednesday.  Praise the LORD!!!  

Then, they picked back up again...so, I took another rescue med (if you know me, you know it was hard to give in and take the meds since we've seen 2+ years of meds not working and I don't like to take meds unless I have to...) and it's been awful ever since.  The seizures that I have had in the last few days have been the yucky ones.  These are the ones that I come out of and don't know what is going on, but about 30 minutes after it's over, I realize I had a seizure.  This scares me as far as time alone with Miss P.  As well, we are still looking for someone full time to come and help me care for her.

Finally, I have already had four this morning and it's only 8am.  Will you please beckon the Father that these will go away?  Will you also pray for our wisdom in some changes we need to make to the diet?  Moreso, no more seizures, Lord, please!!!!!!

Monday, June 13, 2011

My First Swim


video

We have been at B's family reunion this weekend.  It has been so much fun watching Miss P interact with family!  She got to meet her Great Grandparents this weekend!!!  WOW, what a special time!  I'll post more on that later.

She also got to meet her new cousin, A.  He was born about five weeks after her.  I've been trying to teach her how to pet our dogs.  Well, she reached out and loved on A, just as I've taught her to do with them!!  It was very cute!

Anyway, on to the point of this post...

She went swimming for the first time today!  It was so fun to watch!!  Daddy and P went for a swim with Cousin L and Baby A.  It was so much fun to watch the two little ones experiencing their first swim!!


Talking to Baby A & cousin L.













Miss P's favorite part of the swim was learning to jump off the side of the pool.  Oh my goodness, she loved it!  In this quick video, you can see how much fun she had jumping off the side.

video

Friday, June 10, 2011

Sorry we are so far behind on updates.  Things have been crazy.

My doc didn't want me to stay in the hospital last week since she believes they don't get my food correct (thus, causing seizures) and she was afraid they might give me something med-wise that would be a seizure trigger.  So, we got home very early the next morning from the ER after a bag of saline and a "rescue med."  The praise is that I only had one seizure on Friday and NONE on Saturday!  Praise the LORD!!!  It was amazing to have a day with no seizures or auras.  That hasn't happened since before we started the IVIG treatment.

Saturday was wonderful because we got to take some campers to RYLA (Rotary Youth Leadership Award).  This is a camp that I went to in high school.  I later went back through college on staff at the camp.  The director of this camp is the man that walked me down the aisle to marry my Prince!!  P did very well on the trip.  She was even flirting with the young men that we took to the camp.

When we got back to town, we stopped at Target.  I noticed a bump on my leg, about the size of a half dollar, that appeared out of no where.  By the time I made it back to the car, it was red.  By the time we made it home, it looked like a big bruise.  The concern is that it might be a blood clot. 

Due to the previous issues and the fact that my doc is headed out of town for a week & B's family reunion is coming up soon (and we're driving the full 14 hours), my doc wants to skip this week's IVIG treatment.  She says that it should be fine skipping a treatment because most people undergoing IVIG are doing it bi-weekly, rather than weekly.

So, this week has been very exhausting as you can probably imagine.  I had eight seizures on Wednesday and Thursday ran a close second.  Please pray for guidance on what direction we need to take for treatment.  Pray that the doctors would be able to come up with a solution and that we would see results...NO SEIZURES. 

B finishing this post:

From M's earlier posts, you know that she so desperately wants to feel like P’s mommy and having eight seizures in a day does not allow for her to take care of P.  A great praise is that from your generous support we have been able to have the same person come over each day this last week and provide consistency in care and playtime for P.  This has really been a welcomed blessing and M has been able to at least be guaranteed some good morning time with P.  Additionally, she has been able to get some brief moments with P during the day, but yet our help has truly done an amazing job to work with P and keep her on a consistent schedule.  She won't be able to continue to help for the rest of the Summer, so we are still looking for a full time nanny.

Thursday, June 2, 2011

Today was treatment #4.  The docs wanted to cancel all IVIG treatments and switch to high dose steroids since my seizures have been increasing.  The side effects to the steroids are quite frightening.  So, after much discussion with the doc, we decided against the steroids.

However, as many of you know, the therapy they have me on for my seizures requires that I weigh all of my food to the tenth of a gram and the protein, fat, & carbs in each meal have to be to a very specific ratio.  We discovered that the IVIG infusion that they are giving me has quite a bit of protein (probably more than I'm able to consume in two days) & might even have some carbs.  Thus, we spoke with the dietitian at Mayo who changed some things for today's treatment so that we might have more success...

I had eight seizures yesterday. Today has been much the same, but also we are currently now at the hospital.  M has experienced a rapid heart rate for most of the week, but today it became incredibly rapid, hovering around 140 bpm.  When B got home after work we were able to discuss how M felt and determined it was best to reach out to the Neuro.  The Neuro didn't feel comfortable with how M was feeling so she decided to admit us into the ER in Dallas.  Current plan is to do an EKG to check the heart and as well give M a bag of fluids.  M did take an anti-seizure med this evening after her 6th seizure and she has been a little better since, seizure wise, though still feeling like she is on the verge of having a seizure. 

Please pray that M will be okay and that we might be able to at least get an answer as to why she is feeling the way she is.  Additionally, we are still praying for M's seizures to go away.  Please pray that we will see results, TODAY!