Thursday, November 25, 2010

2 Rounds Of Turkey And A Tree

Watching the parade on Thanksgiving morning

Eating brownie mix while we cooked

Kenneth told Carly this was our whole tree.
We all got a good laugh out of it.

Anna's thoughts on putting up the nap time

We had a great Thanksgiving Day yesterday! We have so much to be thankful for that I cannot even begin to list it all. We went to 2 different Thanksgiving lunches so that we could be with both families. We were stuffed and came home and took it easy for the rest of the day. We all went to bed a bit early and I don't think anyone minded that a bit.

The girls were more than ready to get the tree put up today and to tell the truth Kenneth and I were pretty excited too. It warms my heart to see my kids decorating the tree. Carly kept talking about it being a celebration of the birth of Jesus. She and Anna also had fun setting up the nativity scene. There are a few wise men that are now headless but nothing a little super glue can't fix. Maybe it is genetic because I broke the head off of one of my parent's wise men on their scene as well when I was a child. The finished tree looks beautiful!

Anna's neurology appointment went well but if I ever schedule an appointment in Ft Worth the day before a holiday again I think I will punish myself. There was a bad wreck on 35 on my way home and it was shut down. What should have been a 1 1/2 hour trip home took about 4 hours. Basically Dr. Hernandez said that Anna's EEG was somewhat inconclusive but based on symptoms and history she will have to be medicated for seizures. The EEG is only a part of the diagnosis. She will have to be completely seizure free and free of any seizure type symptoms for 2 years before she can come off the medicine. He also said she needs PT on her right leg/foot badly. I told him we already have an evaluation set up with the school district in the next few weeks. I think that was about the gist of it. All in all it was a good appointment. We don't have to go back for 4 months so that is really good news!

As we were busy putting our tree up and getting it decorated I received a phone call from my best friend Rachel. We probably talk no less than 1000 times a day so it wasn't anything unusual. She had gone out of town today to pick up a cat (long story) in New Braunfels and I thought she was probably calling to tell me she had the cat and was headed home. Instead she called to tell me that she had just gotten a call that her mom had died. Rachel just lost her dad very unexpectedly less than 2 years ago. Her parents divorced when Rachel was very young but they were the perfect example of how divorced parents should act. They shared the kids and never said a bad word about the other in front of the kids. Anyway, her mom laid down to take a nap and never woke up. My heart is breaking for her and her family. Rachel has an older sister, a 17 year old brother, and a sweet step dad who reminds me a lot of my own dad. I will be heading to Lubbock in a few days to say goodbye and support Rachel in whatever way I can.

So on this day after Thanksgiving I am most thankful for every day I am granted on this earth and for the family and friends I have to share them with...

Tuesday, November 23, 2010

Uneventful? Is It Possible?

I had an OB appointment yesterday and it was unbelievably uneventful. My blood pressure was up a bit but nothing alarming and no need for more medicine yet. Gabe's heartbeat was still strong and steady. I have another ultrasound on December 2 and that will be the one where Carly gets to go with me and find out she is officially having a brother. Thank God for yet another week of gestation down. What a blessing!

We rearranged (when I say we I of course mean Kenneth) our living room furniture yesterday. I am amazed at how much space a new arrangement of furniture can have! I secretly think Kenneth is nesting. I hope it continues!

Our nephew and his friend have been staying with us this week while they are out of school. They are really good kids and give me hope for the future. Sure, they are teenage boys, but they are polite and well mannered and great with my kids. My nephew's friend was telling me how he doesn't really know his dad and how he tries to call him a lot but his dad is just not interested. It made my heart ache for him. I hope somehow this house can be a soft place for these kids to fall when they need it. We watched MTV together and talked about a lot of teenage stuff. It made me more and more thankful for my husband and the father that he is.

Anna's teacher remarked today that Anna has just been "off" lately. I have noticed too and also noticed she is drooling a lot again. Her neurology follow up from her video EEG is tomorrow so hopefully we can find some answers. I am not excited about driving to Cook's amidst the holiday traffic but it will be worth it.

A coworker of mine died over the weekend. It is too horrible to even write about how she was found. It has been ruled a suicide but is quite suspicious sounding. She always seemed so happy at work and it just really was a reality check. You just never know what other people are going through. Kenneth worked a suicide of a young girl last week also. I think about how low these people must have felt and how alone and although I think suicide is so selfish, I am truly saddened that they felt there was no other choice. I try really hard to be a kind person and I hope that maybe in these sweet girls' deaths that we can all learn a little about being kind to eachother. You never know what is going on underneath it all.. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Saturday, November 20, 2010

Normal Parenting Stuff Is Hard Too!

I spoke with Dr. Cummings nurse to let her know to be expecting to get records requests and FMLA papers from my work and the disability insurance company. She said that although I had not officially been told to take off work yet that Dr Cummings feels I made a wise decision and that we are doing the right thing. That made me feel a little better about being off. She said it is just a matter of time before being off is no longer a choice and it is better to do it now when we can plan vs later when it becomes an emergency. I can remember at first being really frustrated with his office staff but I have grown to really like them. The nurse has been really helpful.

We went to Carly's Thanksgiving lunch at school yesterday. I was supposed to have to work and wasn't going to be able to go. Carly was so excited that I made it. She is thrilled that I am off work. There is this little girl in her class that wants to be her friend so bad. The little girl is new to the school and doesn't have any friends. The problem is that the little girl is not very nice. She also has very little respect for boundaries. She has stolen food out of Carly's lunch when she wasn't looking. I really want my kids to be nice and I have encouraged Carly to try to include this little girl and to understand that she is trying to fit in. Carly flat out does not want to be her friend. Carly is a sweet kid who happily includes Ashley who has Down's Syndrome and Caleb who is autistic in everything she does. So where do I draw the line and honor my child's choices for friends? Maybe the new little girl is really not a nice kid and Carly knows that and doesn't want to be a part of it? I am very conflicted about how to handle the situation. So after witnessing the girls' behavior yesterday I changed to telling Carly to be nice and speak nice words but that she does not have to be her friend and include her in everything. I hope I am doing the right thing. Sometimes the simplest parenting things can be so hard.... BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, November 18, 2010

Home For The Holidays

The visit with the cardiologist went well. My echo was normal except for a small pericardial effusion which is too small to do anything about and may have even been there for awhile. It was nice to go to a Dr. appointment and be told something was normal! My blood pressure was great yesterday but I rested most of the day. Today it is up again since I have been out and about. My mom requested that I please not go back to my 12 hour shifts at work. I called the employee health nurse who was, let's just say, less than helpful, to find out what I needed to do to go on light duty. She informed me that there is no light duty for pregnant women. There is light duty for anything else, but not pregnancy. She said the reason is because with light duty you have to be able to return to work within 12 weeks without restrictions and in pregnancy that just isn't going to happen. I told her politely what I thought about that. She is completely unwilling to work with me even though I am not requesting light duty because I am pregnant and just want easier work- I actually have a medical necessity. So after talking to my boss and Kenneth we decided it would just be best for me to go ahead and go on short term disability. We decided a few more weeks worth of work is not worth the risk to myself and baby Gabe. The disability will pay 60% of my pay for up to 6 months. It will be an adjustment but we will make it. Last time we survived without any disability and me not having any income for almost 6 months so we can certainly do it this time. We will cut back on eating out and decrease our Internet speed and satellite channels and those type of things plus I will not be using over $100 worth of gas per week like I do now. I think it is a totally doable thing. Heck, I may even learn to clip a coupon or two. God has always provided and I know he will continue to do so. I shed a few tears today just because I had really hoped things would go better this time, but they aren't and I just have to accept that for what it is. I will try to use this time to rest and also to enjoy being home with the kids. It will be nice to hopefully be home for Thanksgiving and Christmas this year. Thank God I have such a loving and supportive husband, family, and group of friends. You guys keep me going...

Tuesday, November 16, 2010


Good news!!!! My 24 hour urine came back at 224 so this was just a need for more/different medicine and not the dreaded PE. I can go back to work. I am still to see the cardiologist on Thursday. I am to call in if my pressures are higher than 140/84. Dr Cummings is hopeful that the Procardia will make my pressures behave. I am so excited to go home and see Kenneth and my sweet girls. God is so good! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Waiting for 6:30

I had a good night and got some good sleep. My blood pressure is still behaving nicely with the Procardia. My headache is a bit better but still there. My swelling is gone. My 24 hour urine will be complete at about 6:30 pm. Dr Cummings said the plan all hinges on my 24 hr urine results. If it is negative for protein then I can go home and continue to work for a little while longer. If it is positive he said we will discuss the plan at that point. I know if it is positive for protein then things will become day to day at that point. My sister reminded me that the Angel Gabriel always brought good news and I am praying this sweet baby Gabriel will do the same. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Monday, November 15, 2010

So It Goes

My blood pressure hit 150/98, I had a bad headache, and my swelling was not improving. I called my doctor and am now in the hospital. The good news is that the baby looks good on ultrasound. I got new blood pressure medicine and my pressure has responded nicely. The bad news is that my head is still killing me and I have hyperreflexia. These can indicate cerebral edema. I am in the process of doing a 24 hour urine collection to see how my kidneys are holding up. I am terrified! I keep hearing babies being delivered and crying that sweet first cry and keep wondering if we will make it far enough to hear that. I am trying to stay upbeat but I am so scared! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

The Crazy Train

I am more than half way there. I officially hit 20 weeks this past Friday. For most people this would be a time to sort of celebrate but if you have had preeclampsia (PE) this is the day when the fear sets in. Although PE can strike at 18-19 weeks it is very rare but at 20 weeks you are fair game. With Anna, it struck us at around 24 weeks. I cannot imagine that in 4 weeks from now would be the time that I went on bed rest with her. I cannot believe that in comparison that would mean I would be on bed rest until late March. That seems like forever away! I mean, that is forever away. This time has become so much more emotional for me than I ever imagined. I am so scared. I am terrified of the same scenario repeating itself. I am terrified the scenario might be worse. I got home last night after my shift and my legs were so swollen from the thighs down. Let me tell you, pitting edema is sexy!!! I didn't get too concerned and thought if I would just get off of them and sleep that they would get better. Not so much- they are just as bad this morning. My B/P is steadily on the rise. I see the cardiologist on Thursday and hope maybe that will yield some answers. My OB is already talking about me not working full time anymore. The hospital will let me do light duty (desk job stuff) for as long as I need so I am hoping maybe my OB will let me do that for awhile instead of cutting my hours. But if not, I will do what I need to do to fight for this baby boy. So then this morning Kenneth calls me to tell me the fire department wants to have a baby shower for us. There is another fireman's wife who is due in December and they wanted to have the shower for us together in December. I felt like a total loser but I asked them to please have the shower for the other girl but that I do not want a baby shower. I want to celebrate for the other girl but I am too scared to celebrate for us. I am terrified of having all of this baby stuff and coming home from the hospital without a baby. I am really even hesitant to get a nursery ready. I have to do something because the girl's room needs to be repainted and we have to get them some new furniture since they will be sharing a room. I am all for fixing their room up but I almost just want to leave what will be the nursery alone until we are home with a baby. I felt really bad telling Kenneth to tell his chief, "No thank you" but I just don't think I can do it. I really hope they understand where I am coming from and that I am not at all trying to be rude. It is the nicest thing for them to offer but I am just scared to death. Kenneth just keeps telling me to try to be positive and I am trying. It is the hardest thing. I think after all we have already been through that they will understand. So here I am, riding the crazy train and barely hanging on...

Thursday, November 11, 2010


I have been bugging the school for about 2 months now to get Anna's testing done to get her set up to start speech therapy as soon as she turns three. They would tell me they would get it done and then I would never hear anything. I think they were just saying whatever they thought would appease me. Anyway, today I actually called and spoke directly with the speech therapist and voila, progress was made. We will have a preliminary IEP meeting on November 30th and go over her previous testing and do some new testing. Then she will be evaluated on December 10th by PT and OT to see if they can help her. She is getting some pretty bad in toeing of her right foot/leg so I hope maybe they can help with that. We had an ortho appointment scheduled for last week but since Anna ended up in the hospital I had to cancel the appointment. I am hoping the PT can maybe make some recommendations about AFOs and that sort of thing. If not then I will reschdule the ortho. Anyway, once all of that is done then we will have the official IEP meeting and get started with her therapy again. Her vocabulary has improved so much but her articulation is horrible. That makes sense since articulation is a fine motor skill. All in all, I am happy I finally made some progress with the school and feel we are moving in the right direction.

I rushed home after work to meet with Carly's teacher for a parent/teacher conference. I really had problems with Carly's teacher earlier in the year but she is starting to grow on me. She said Carly is doing really well except for all of the backwards writing she does. I am still working on the whole dyslexia thing- that is another ongoing battle with the school. I bet they love me! I really think the after school tutoring is doing Carly a world of good and I am thankful for it!

At about 5 pm tonight they called a code blue at work. Luckily I was not in charge today and therefore did not have to respond because it ended up being a 2 year old whose heart stopped in the midst of a seizure. Great, just what I wanted to hear! This is why I am so afraid to move Anna out of our bed. At this rate she will be 16 and still sleeping tucked in between mommy and daddy. She has done really well the past week as far as I can tell. I have not noticed any seizures. Either she has not had them or I am sucking at noticing them. (Well apparently I do suck at noticing the daytime ones since I didn't even know they were happening.) Anyway, I do not know if it the medicine finally building up enough in her system, or the prayers, or both, but something is working and I am so thankful! She still is not sleeping much at night but a wise man (or mother) once said it is far better to be awake and smiling than awake and seizing...

Monday, November 8, 2010

Shhhh. Don't Tell.

The original plan was to take Carly along for my 20ish week ultrasound so she could find out the sex at the same time we did. Then I began to panic. All I could picture was finding out some bad news and her being there. So Kenneth and I went alone for today's ultrasound and Carly will go to the next one now that we know the baby is doing fine. So if you know us in real life, please don't tell her the sex of the baby until she can see it for her own eyes. What is the sex, you ask? We are having a boy! There is no doubt and he was not shy about showing off his junk. His first name will be Gabriel and he will go by Gabe. His middle name is either Charles (Kenneth's middle name) or Thomas (Kenneth's dad's name). That decision is up to Kenneth and he is not sure what he wants yet. So far everything looks good with Gabe and he is growing right on track. His legs are a week ahead which is normal for our kids- they are all legs! He is a hefty 12 ounces at this time which is great! Dr C. is concerned about my health though. Clearly, nothing is ever simple with us. He is concerned about my heart and is sending me to a cardiologist to evaluate how my heart is functioning. He is concerned I may have some sort of cardiomyopathy. There is a list or reasons why he suspects this but I will not go into it. I am believing everything is OK and will continue to believe that until I hear differently. If something is wrong it is yet another gift from my dear friend preeclampsia.

I actually already got a call from the neurologist's office this morning. I will tell you what I know and what I understand but keep in mind this has been translated from Dr. Malik's report to Dr. Hernandez's nurse to me and I have very little understanding of this whole brain/seizure thing. I will have a much more thorough explanation after our appointment with Dr. Hernandez on the 24th. Anna had seizure activity during the EEG but it was not at night, it was during the day (see, I really don't know much about this stuff). This does not mean she ahs not had them at night, she may have, but on the EEG they were all while she was awake. Anna's seizure activity originated from the occipital lobe, not the temporal lobe where her cysts are located (apparently she has bilateral cysts, not just one as I previously thought and they are on both sides of her hippocampus which is in the temporal lobe (I think)). The type of spike/wave pattern she had is most commonly seen with the generalized epilepsy syndromes. This means that both hemispheres of the brain are affected from the start of the seizure. These types of seizures generally manifest as tonic/clonic, myoclonic, absence, and atonic. Confused yet? Yeah, me too. For now we are leaving her medications alone and we will see how things go and address the plan at her next appointment. She has had a really good past few days and I am praying this will be the trend. I am saddened and yet relieved by the EEG results. I am saddened because the seizures are now confirmed and relieved because now we know more about them.

So that is today in a nutshell. And all of this prior to noon...

Friday, November 5, 2010

Free At Last

I had a hard time keeping her awake yesterday, not sure why and not sure why she will sleep at the hospital and not at home. Oh well, it did make things easier for both of us.

We got 30 minutes off the unit yesterday and spent it in the cafeteria. Anna had fun pulling around the wagon. Apparently she didn't think she was supposed to ride in it.

Day one right after the lead placement. She cried for about 15 minutes and then she was out!

Daddy/Daughter Day on Thursday

Having fun in the playroom a.k.a. Mommy's break time

Finally, we are home. We skipped the pediatrician's office. I was pretty sure one more doctor/office in my day just might push me over the edge and turn me into a homicidal maniac. I try really hard not to rely on my mom (a nurse practitioner) or my sister (MD) for medications because I feel it is unfair to them. If something went wrong I would never want them to feel any responsibility for it plus I think sometimes it is hard to really be objective when it comes to family. Today, I broke my own rules and I relied on my mom. (She didn't think homicide was a good idea either.) So we have antibiotics. Here are the pictures from our adventurous week. All in all, both girls handled things very well and I could not be more proud to be their mother. Kenneth and Carly had a daddy and daughter day yesterday and went looking for deer. Carly had a blast and has decided she wants her room decorated in camouflage now. Um, not so much dear. Anyway, I am so glad to be home. I can't wait to crawl into my own bed tonight, even if Kenneth is snoring...

The Neverending Story

Good news! The MRI report is "cystic lesion of right temporal lobe unchanged" and no other new findings. Bad news! Our pediatrician will not call in any antibiotics without seeing her first so when we leave here we get to go to yet another Dr appointment before going home. Dr Malik said he will get the EEG report to Dr Hernandez and we will hear from or see him next week. Until then we are to keep all medications the same. That is all for now. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Almost Done

They got us up at 5:30 and got all of the leads off of Anna's head. I got her bathed and got her hair washed although I will still be picking glue out of her hair for many days or weeks to come. We got her earrings out and all that stuff and then we were off to meet anesthesia. I swear it never gets easier to see your child gassed and know intubation follows. I am a bit nervous too because her oxygen saturation was hovering around 92 this morning which is borderline. She has had a junky cough for a couple of weeks but no fever and her lungs sound clear so I assumed it was just a cold. Maybe not. I am so ready to be home! I will post some pictures from this whole experience when I get home but I am blogging from my phone and can't figure out how to insert a picture. My prayer for today is that the cyst or lesion (it depends on who you are talking to as to what it is called) that is in her right temporal lobe is unchanged or gone. Please join me in continued prayers for healing for Anna. I am not specific about how the healing will come, that's God's deal. Thank you again for your continued thoughts, prayers, calls, visits, and love. I will never be able to express how much it means to us! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, November 4, 2010

Exerting Control

I somehow just erased my signature on this post but oh well, it isn't like you don't know my name by now. Today has actually been a relatively good day. Anna slept in until almost 9. She woke up happy and off to the playroom we went. She played for a few minutes and then just fell asleep sitting up. We came back to the room where she ate a few bites of pancake and then proceeded to fall asleep face first into her breakfast tray. I wiped the syrup off and laid her down. She slept until 2 pm. I talked to the nurse because I was worried about her sleeping so much. She just could not keep her eyes open and she has never been like that before. We reviewed her medications and they are the same here as at home. She said it was just stress. I don't really buy that but whatever. She finally woke up and although she still looks kind of drunk, she has been playing nicely since. She is funny though. I guess she feels so little control in this situation that she has decided to exert what control she does have. That has come in the form of refusal to speak. She will say a few words to me and she spoke to my friend Amy (because she brought tacos and queso last night) but when it comes to staff she is mute. She will flash a cute smile but that is it. The anesthesiologist came by earlier and said her MRI is scheduled for 8 am. I hope we get to go home soon after that. Not much else going on here. Just sitting around waiting for, well, who knows what we are waiting for...


Anna slept like a rock (and so did I) from about 9:30pm until 2:45. That's great except I was beginning to worry that she wasn't going to have a seizure. It's not that I want seizures but we really need them to happen while we are here so the doctors can get a closer look at what is going on. She laid awake until a little after 4 and then I finally crawled into her bed with her. She is used to sleeping with Kenneth and I so I thought that might help het fall asleep. Indeed it did. She was asleep within about 10 minutes. Then as quickly as she fell asleep, a seizure started. I felt sadness but relief as well. The nurses came in and messed with her but she was out. So now here she is sleeping soundly and I am wide awake. Since her seizures have been clustering I feel like I need to stay awake to catch the next one. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Wednesday, November 3, 2010

Getting Settled

We got here a little before 10 and so far things have gone quite smoothly. Registration is always a breeze and the staff has been great, as usual. I just met with Dr Malik who is the neurologist on this week. He seems nice and quite smart but I miss Dr Hernandez. That was the only part I hated about moving the testing up. It meant our neuro wouldn't be here. He will ultimately make any final decisions about treatment though. What I think is one of the worst parts of an EEG is getting the child hooked up. It went so smoothly today though. She cried for about 10 minutes and then she fell asleep and slept through the rest of it. We got back to our room and she was napping nicely until the nurse practitioner woke her up. That was the end of her nap and it ruled out one for me too. So now we are in the playroom and she is happy. I am already exhausted and only a few hours into this but I guess it has to be done and it is honestly not any more exhausting than nights at home have been lately.

Monday, November 1, 2010

Moved Up

Anna had another really bad night last night. I called the neurologist's office again because they want to be notified of her seizures. They decided that her EMU stay cannot wait until the 16th so she is being admitted this Wednesday. We will stay until Friday and she will have her MRI on Friday. I am nervous and relieved all at the same time. I just want it to get better! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop