Friday, March 28, 2008

Jesus is Risen!

Happy Easter! It was a wonderful day to celebrate the Lord's Resurrection!

The Wednesday before Easter, me and the kids decided to go to my parents. After all, it was spring break and all we'd done is sit at home because of sickness. So, we had a couple of nice days of weather forecasted, and we hit the road. It was nice to be on the farm. Brenna and Bella road the ponies quite a bit, and Jalen got to ride the four wheeler and hang out with the cousins. We only spent one night, but it was a lot of fun. We also colored eggs and hunted them.

We got back Thursday night and I woke up with fever on Friday morning. I felt terrible!! I think I had a sinus infection on top of whatever Jalen had. Thankfully, I was able to take enough meds to keep my fever down so I could go to church Sunday. That afternoon, I just crashed on the couch. I hadn't really had the time to be sick before that. We had a lot to do to prepare for Sunday. It wasn't a great time to be sick. But, is there ever a good time for that??

Brenna has been doing okay. Her seizures haven't been as numerous, so I thought we were on the right track. She caught the virus we all had and woke up Monday morning with fever. So, she didn't get to go to school until Wednesday. But, I got a call from her teacher at 11:00, and she'd had five seizures. I don't understand it. She loves school and is such a social butterfly. But, for some reason, being there brings on seizures. Maybe it's over-stimulization. I guess we might try to do a home bound teacher program for the rest of the year. St. Jude wants us to come back in April and do a special test at LeBonheur. It's called a Magna-Encephalagram or something like that and it's a real high tech EEG/MRI type machine. Apparently, it's brand new and there are only two in the States. The other is in Texas. This test would map out her brain and show exactly what area to take out if they decide surgery is our only option. I'm really just tired of the whole thing. The medicine she's on is making her so emotional that she can be unbearable. I know that it's not her fault, but I lose my patience sometimes. She's not sleeping well either. It usually takes one to two hours for her to fall asleep at night. That's tough because she needs her sleep.

We finished up Spring break by working on Jalen's Science Fair project. He got frustrated a couple of times, but worked hard on it. He was really proud of himself when he came home yesterday with a third place ribbon! I was pretty proud too.

Yesterday, it was 80 degrees here. Today it's in the 50's. But, everything is greenin' up. I'm so excited for Spring to be here. I love the feel of the warm sunshine. Yesterday the girls helped me plant a few flowers. Bella found some worms and fed them to the chickens. She said that her chicken said thank you. I don't doubt it. :)


Sunday, March 16, 2008

Sick of Sick

The kids and I stayed home from church today. I hate missing the fellowship and worshiping together with my brothers and sisters, but sometimes it can't be helped. Jalen is still running fever off and on and Brenna is having terrible headaches. Her neck and spine are hurting as well. She can't look down very far without her neck hurting and so far, the ibuprofen and tylenol aren't doing much to help. I massaged her forehead this morning with vicks and that relaxed her enough to go to sleep for a while. She's had countless lumbar punctures and never has she had these problems afterwards. I'm calling St. Jude tomorrow to see if I should be concerned at all.

A friend of ours, whose son also has cancer, brought us dinner tonight when she heard I was home with sick kids. What a blessing!! The last thing I really want to do tonight is cook! I'm sure she can relate!

Please say a special prayer for Brenna. She is in a lot of pain. Hopefully, when I call the doc tomorrow, they will know what we should do and also have some plan of attack for the seizures as well. Dare I hope?

Saturday, March 15, 2008

Kids & Animals

Here are a couple of pics of the kiddos before Christmas. THe girls are on Shadow and Sunshine. Jalen just got his face washed by our dogs, Jet and Rosie.

Home Again

We made it home last night, just in time for it to start pouring. We watched the lightning show for about the last hour of our drive and got about two miles from home when it started raining hard. It's always fun to unload suitcases in the rain. But we were just glad to be home.

The meeting with the epileptologist didn't go exactly as I had planned. There must have been a break down in communication between St. Jude and LeBonheur, because we were assuming Dr. Clark would have all the information from the MRI's and tell us what we were going to do. But, he still didn't have the scans. So he just checked her out thoroughly and adjusted her meds again and told us they'd call us next week with a gameplan. I was very disappointed. It's not like we just waited all week to see what kind of action we were going to take to get on top of things. The strange thing is, she hasn't had a seizure the entire week while we were there. She's just been so confident that they were going to fix her. Dr. Clark said that worry and stress can bring them on, so I guess since we were getting her checked out, she wasn't so stressed out. I don't know. I asked him about school, because she seems to have more at school. He said he'd like to keep her as normal as possible, so he'd recommend keeping her in school instead of doing a homebound program. Next week is spring break, so we have a little time before we have to worry about that, I guess.

So, after meeting with the doc, we went back to e clinic to get her LP results. All clear! Praise the Lord! Then we met a friend of ours for lunch at Huey's downtown. They have great burgers and Brenna likes it because you can shoot toothpicks through your straw and stick them in the ceiling. Her lungs aren't quite powerful enough to make it to the ceiling, but they hit the ceiling fan a few times and flew onto other people's tables. Nobody got upset, I guess they just expect it to happen when you eat there. I don't mind the toothpicks so much as the flying slobber that follows them.

Brenna's back has been really sore since her LP. They actually had to stick her three times to get enough fluid. That's very unusual for her. Normally there's only one poke and her fluid gushes out. I thought that was strange. But nobody seemed concerned. Her back is more sore than usual this time. It's no wonder.

The endocrine people increased her thyroid meds this time. Her numbers were still off, so they felt they needed to increase it. And since she hasn't grown adequately over the past year, they want to bring us back in a month or so and do growth hormone deficiency testing. And, since she's on seizure medication, they have to do the test at LeBonheur. They're supposed to call us with that schedule.

I was supposed to go to the Extraordinary Women Conference here in Tulsa this morning with friends. I was looking forward to going. It was supposed to be really good. But when I got out of bed this morning to give Brenna her meds at 5:00, I was so tired. You know, that shaky, nauseous kind of tired? I didn't think I could make it all day. Of course, Jalen ran fever last night, so we were up and down with him. It's always fun to come home to sick kids. He sleepwalks and moans a lot when he has a fever, so we didn't sleep well.

My mom left about an hour ago to go home. She got to take Bella to the doctor on Tuesday, while we were gone. She had pink eye and impetigo. I think every time we go to memphis with Brenna, one of the other kids comes down with something. This time it was both of them. I may have to spend Palm Sunday at home. We'll see how Jalen is feeling the rest of the day.

Even though we came home to sick kids and we don't have all the answers for Brenna's seizures, there is reason to praise. Psalm 34:1-3 - I will extol the Lord at all times; His praise will always be on my lips. My soul will boast in the Lord; let the afflicted hear and rejoice. Glorify the Lord with me; let us exalt His name together.

Thanks to all who prayed and continue to pray for our family. We thank God for you.

- Bettina

Thursday, March 13, 2008

One More Day!

Well, tomorrow we head home! We will have an appointment around 9:00 at LeBonheur Children's Hospital this is the hospital Brenna had her second Brain Surgery at. We are meeting with her eptimologist and He is not a St. Jude Doc, but a LeBonheur Doc. - Obviously! Today the only thing we had was an L.P. test (Lumbar Puncture). We won't know the results for that for a few days. Once again Brenna impressed the daylights out of the anesthesiologist today. There were three in the room as they put in an IV. She wanted to watch and didn't say a word. The first one the vein blew right away so they had to put in another and they were very very impressed. Everyone knows she gets that from her mom and not her dad (Dad is typing this!) We went to the zoo today and it was a perfect zoo day as far as the weather goes. There were 7 charter buses there, plus a few school bus loads all of kids and sponsors. So there were a few people there to enjoy the day along with us.

As far as yesterday went, She had her feet fitted for inserts that will fit in her shoes. We won't ge them until we get home (They will mail them to us!) She has not lost any more hearing - thank the Lord. They did notice a 'possible' problem with one of her ears - the 'air test' was showing that there was more movement in one of her eardrums and the other was normal. We met with the ENT specialist - who is only there twice a week for half days and he was just finished with his appointments and we went right in. He said that they extra movement was nothing. He also commented on the flexibility is from having tubes put in and one side grew back normal and the other didn't but it doesn't do anything except show that there is more movement. Anyone else confused?

We also saw the Endocrinologist (growth study people) Brenna hasn't grown very much in height or in bone age (she is only 7 and ten/twelfths years old) Again - anyone else confused? How in the world can my bones not be the same age as my body?

We did get to have lunch with Jeff and Julie - minister and his wife from East Win Christian Church, at Big Foot (at Brenna's request - both place and friends!) Of course we had to end with the traditional Smores at the table. As for now we wait for the morning and pack up, head over to the 'other' hospital and then have a quick lunch with another couple from East Win - who had a baby that we have not seen yet. Then we will head back for home - Cleveland, Oklahoma. We are ready to be home, but know we will hit the ground running there since Easter is just a little over a week away! Thank you all for your prayers and support. God continues to take care of us and bless us incredibly. I am amazed that he has kept us in HIS care throughout our journey. Once again HE has proven HIS love to us!

Tuesday, March 11, 2008

Clear scans!

We had a bit of a scare yesterday. After Brenna's MRI, she was supposed to have a lumbar puncture while she was still under sedation. The nurse came out and said she didn't want us to freak out but they didn't do the LP because they thought there was something showing up on the MRI. It looked like a cyst or mass that was blocking the flow of her spinal fluid, so they didn't want to mess with it, especially since Dr. Gajjar wasn't in to approve it. You know that feeling in the pit of your stomach you get when you go over a drop off in a roller coaster? Well, that was how I felt at that moment. Of course, we didn't get to find out anything official until today when she had another MRI and we got to meet with the doc. He said her scans were clear and he didn't know what they had seen but it looked clear to him. He rescheduled the LP for Thursday and I can breathe easy again. Of course, when we're on the road back home, it will be even better. We meet with the epileptologist on Friday morning to see if the MRI showed whether or not anything can be done about Brenna's seizures. Of course, by anything, I mean surgery. I'm not sold on that idea, but if that's what we have to do to, I just ask for God's wisdom in making that decision.
Tomorrow, we go to the endocrine clinic and she gets her cortisol levels tested. She also will have a pulmonary function test (lungs) and an echo EKG (heart). She's going to get fitted with inserts for her shoes to help strengthen her ankles and arches. One of the chemos she got on treatment, weakens her muscles and ligaments. But they think these will help her regain strength. She really walks on the inside of her feet. I wonder if they'll want her to wear flip flops this summer because they have no support whatsoever.
Anyway, another day, another test.
Oh yeah, clear scans were the best birthday gift I could get!! Praise You God!

Thursday, March 6, 2008

Birthday Celebration in Memphis!!!

Well, we head back to Memphis this Sunday (March 9th)right after church. Bettina's birthday is March 11th, so once again she will celebrate (if you call it that) at St. Jude's. I guess the best present she will get is the clear scans and the news from the drs. "NED" (No Evidence of Disease!) Brenna is excited about going back - excited because she so desperately wants the seizures to stop. She is convinced that they will "fix" her while we are there! Boy, I hope that have some good news to give her, she really needs a bit or two of good news. We continue to see a pattern with most of her seizures. Most seem to be occuring while at school. The meds she is on slow her brain down quite a bit. She is not as quick at comprehending and learning compared to her "normal" self. Will we ever see this 'normal' self again? With this brings tension and stress on her which (I beleive) brings on her seizures. After Memphis we will look at having a school teacher come and teach her while at home to see if this helps. We just want to take it all away from her so that her troubles are over. But we don't have that power, therefore we don't have that choice! We will just continue to hold on...

Sunday, March 2, 2008

Terrible Week!!!

Brenna has had a terrible week. It started out on Monday...she went to school and had 7 seizures before 10 a.m. Bettina called St. Jude and they told Bettina to give Brenna her emergency meds. So she did and Brenna was better than the morning but very emotional because she is sick and tired of dealing with this - can you blame her? Tuesday she stayed home from school. Wednesday she went back to school for a 1/2 day, but had 4 seizures before 9:30 a.m. So she came home. Thursday she stayed home from school and Friday went to school and had 5 seizures by 9:30. She came home and went back at noon to watch a movie with school friends. Today (Sunday March 2) she didn't look very good - her eyes had red circles around them. She slept during church in a pew. She is very very tired emotionally from these seizures and is trying to fight them as best she can. She is looking forward to going back to Memphis (March 9th), and hoping they will find out something to help stop the seizures from happening. We just ask for prayer, wisdom and guidance by the Holy Spirit! God is faithful.