Anna and I spent the day in Ft Worth. The highlight was getting to have lunch with my dear friend Amy who I don't see near often enough. We ate at a cute little deli/bakery place called McKinley's and then it was off to Cook's for an afternoon of appointments. Let me just say that there is nothing quite as humbling as an afternoon spent in the waiting area of the Neurosciences Department. It is so clear at that time how minor our struggles are compared to others and how blessed we are that Anna is doing as well as she is. We met the cutest little boy from Abilene names DaShawn. He has CP also and is finally learning to walk. He had the sweetest smile and disposition and maybe even a little crush on Anna. So here is the Neuro update: let me again start by saying how much I love Dr. Hernandez. He is so kind and caring and makes crappy news seem not so bad. He said that even though Anna's 1 hr EEG was normal, he is certain based on the descriptions and patterns of Anna's seizures that they are indeed seizures. He said that only 50% of kids with seizures will be caught on the 1 hour EEG. He wants to push the Tegretol to its maximum and see if we can get better control but he didn't seem to hopeful about that. We went up on her nighttime dose tonight. We are to stay at this dose for a week. If there is another seizure we will go up again on the nighttime dose. If she has another seizure after that then we are to stop the medicine and she will be admitted to the Epilepsy Monitoring Unit at Cook's to try and get a clearer picture of what is going on. She would also have a repeat MRI at that time. Dr. Hernandez believes the cyst in her brain is most likely the cause of the seizures. We talked about the cyst and he had some pretty tough things to say. It hurt to hear about how my baby has never been "normal" and her development has never been "normal." I know those things but for some reason knowing them and hearing them are totally different. He was kind in his delivery but those things are hard to hear no matter how they are delivered. He said that 60% of kids will become seizure free with 1 medicine, 80% will be seizure free with 2 medicines, and the other 20% will never be seizure free. He hopes we will be in the 80% because the 60% is not looking likely at this time. I talked to him about how it was like someone pushed the reset button on her when she started seizing and about the advances we have seen with her since the seizures started. He agreed that those are wonderful things but said that where we are right now is not a good place to be because if we do not get the seizures under control she will eventually suffer further brain damage from them. I also talked to him about how the seizures seem to mostly occur in her sleep and either right after she falls asleep or right before she wakes up in the morning. He said that is typical because at night our brain looses all inhibition and does not even try to suppress those erratic firings. The 2 times she is having them are at specific times in the sleep cycle which are the times most likely for seizures to occur. He expects to probably hear back from us in about 2 weeks. And now for the GI update: the button is coming out!!!!!!!! Dr. Ogunmola does not have the tool to remove it though so we have to make an appointment with the surgeon to get it out. It is just done in the office and is apparently no big deal. I will be calling to set up that appointment tomorrow and hope they can get her in very soon! Anna weighed in at a hefty 27.7 pounds which puts her above the 25%! That is fantastic news. Dr. Ogunmola couldn't believe it either. We are going to keep her on the Nexium for now but cut the dose in half and see how she does. He said he generally doesn't like to remove a button until it hasn't been used for 4-6 months but because we are at a place where Anna's needs to be replaced or removed, he does favor removal to replacing a button that we are not using. He said there is the risk of her stopping eating and needing it back. We realize the risks and accept them. So that was the day. I have my OB appointment in the morning and hope it goes as smoothly as today did. Goodnight!
Sunday, August 29, 2010
It has been a fairly low key weekend. I worked yesterday and Kenneth spent the day at the lake for a bachelor party. The girls spent the day with Christy and had a blast. Today we have just been lazy and only left the house to go visit Kenneth at the station. The girls were supposed to spend the night with my parents last night but Carly picked up Anna's stomach virus and so I ended up going over and picking them up around 10. She seems fine today. I am thankful because school starts tomorrow. Her clothes are laid out, lunch packed, backpack ready, and I am hoping the morning will go smoothly. I have to work but am going in a bit late so Kenneth and I can both take her to school. Then she starts jazz, tap, and ballet again this week, too. She took the summer off but is so ready to be back in dance. She does not want to play soccer again and I am fine with that. It was too much to try and do dance and soccer. She wants to play tee ball in the spring- we'll see. Anna has appointments in Ft Worth and me in Denton this week so it looks to be a busy week. Anna has a had a couple of seizures today so I am more ready than ever to get to the neurologist. She is also just generally crankier and sleeping a lot more too. (Not at night, don't be fooled.) She is taking 2 2 hour naps a day though when she is home and that is totally unlike her. She is also constantly complaining about her stomach hurting. I am not sure how much it hurts and how much she just wants her button out. I keep telling her we will go the doctor soon. I did have to vent her stomach the other night because she was so full of gas but I think that had more to do with the stomach virus than anything. She is still drooling a ton and that is really bothering me more than the seizures themselves. The drooling started around the time her seizures and Tegretol started. I don't know which is the culprit. I just know that I hate the drooling. I hate it for so many reasons but mostly because it just makes her look more like something is wrong with her. And it is, and I know that, but I just hate the drooling. She looks fairly normal otherwise. I can't really put it into words right now, maybe I'll try again later. So that is the latest. Nothing too exciting. I think the nausea and fatigue are starting to let up a little for me, but not the hormones. I was watching an episode of Hannah Montana with Carly tonight and I started crying. She was singing to all the kids whose parents are deployed right now. It was touching under normal circumstances, but crying, at Hannah Montana, really?
Monday, August 23, 2010
I only wish the computer was able to relay the sarcasm in my voice in regards tot he title! So I was supposed to be in Denton (about 45 minutes from my house) by about 8 for my OB appointment at 8:30 this morning. Kenneth is on duty and our baby sitter was busy so my mother in law had agreed to watch the kids. She was going to meet me in town (15 minutes from my house) at about 7:15. So I got myself up and dressed and then got 2 sleepy kids up and dressed and we were in the car and ready to head out- right on time. I put the keys in and turned them and then click and nothing else. Nice. A dead battery and no husband at home which means no other vehicle at home to jump it off with. I locate the battery charger and hook the car up but it must have been really dead because it still did nothing. I am certain the humidity was like 99% because I was sweating like crazy. I called my mother in law and had her come to the house and pick us up. She dropped me off at the fire station where I got Kenneth's truck and headed off to Denton. I still had enough time to get there by 8:30- barely. I haul butt and get to Denton and get up the Dr. office. I felt such a sense of accomplishment that I actually made it there, on time, without a major hormonal melt down. I walk in the office and say to the girl at the desk that I am there for an 8:30 appointment to which she says, "uh yeah, about that, we tried to contact you and reschedule. Dr. C is going to be out of town all week." NICE! I explained to her that I realize that no amount of fit throwing will change things but that I am *really pissed* and that the ONLY phone call I received was the one confirming the appointment. She looks in the computer and says, "Oh, it looks like it was the other girl who tried to call you." Nice try at passing the buck lady, but I wasn't born yesterday. This is already the 4th problem I have had with this staff and if I didn't need this particular doctor I would be out the door. I have already had to call repeatedly day after day to get them to return phone calls about blood pressure meds and stuff. I think I will talk to Dr. C about this at my upcoming appointment. I don't want to be a pain in the butt, but I really need to feel like somebody is paying attention. After our last outcome I cannot emotionally deal with feeling like my needs are being put aside. I realize I am one of many but I am one of many for whom things went really wrong last time. I think sometimes the Dr ends up taking the blame for crappy staff. I know this doctor is good, it is his staff that are crappy! Anyway, so then she offers me an appointment on the 31st. I tell her I cannot do that day because my daughter has appointments at Cook's all day that day. She asks if I could reschedule those. OK, so you screw my appointment up and then want me to reschedule my daughter's appointments to accommodate your inability to do your job. Um, nope, not doing it. She then says OK, we can do September 1st. I agree to that appointment but will call ahead of time that morning to make sure nobody has tried to "contact" me to reschedule. I suppose they contacted me telepathically and my abilities are down at the moment, who knows. Anyway, I drive to BFE and pick my kids up and we head home. I pull Kenneth's truck up to my car and climb my big fat hot sweaty butt into the back of his truck and get the jumper cables. Keep in mind it is still 99% humidity but now also somewhere between 105-110 degrees outside and keep in mind I am pregnant and nauseated as hell. I am sweating like nobody's business but I finally got my car started. Oh, I forgot, as we were leaving my mother in law's, Anna seized or something and fell down a flight of stairs, backwards, on her head. Anyway, we take my car to O'Reillys and they test my battery and it is indeed bad so I spend $100 for another one and take it to the fire station and have Kenneth put it in and then take the old one back to O'Reilly's for my $12 credit. Finally, I get a huge iced tea and head home. My dad is coming by when he gets off work so we can take Kenneth his truck back so he can get home in the morning because I have a 7 am meeting at work. Nice huh?
Sunday, August 22, 2010
Everyday I think about blogging, but then I either fall asleep, or puke, or think about puking and blogging takes a back seat. I have been living on Zofran and hoping there isn't some sudden supply shortage because I might go off the deep end at that point. I have my first OB appointment tomorrow. I'll update about it afterwards. We had to go to Wal-Mart today and our timing could not have been worse. Tax Free Weekend is insane. If stores offered an "8.5% Off Sale" would anybody care? Nope, so why do they care so much about tax free, a mere 8.5% off? Is it just the feeling of sticking it to Uncle Sam or do people really think they are saving that much? Anyway, enough of that nonsense. Anna got promoted to the next class in day care. I am still not sure if I am ready for that, or if she is for that matter but we will give it a try. I am so comfortable with her current teacher and with her ability to handle Anna's special needs yet treat her also like she is "normal" enough. She doesn't freak out if Anna has a seizure. The new teacher is not just new to Anna but also new to the school and thus not used to Anna and all she entails. Like I said, we will give it a try, but if it doesn't work out I will not hesitate to have her moved back. Anna is still eating like a champ and keeps pulling at her button and saying "Dr. out, Dr. out." We see Dr. Ogunmola on the 31st and I guess we will discuss it then. Anna had never pulled at the button before but she is pulling at it like crazy now and I think if we don't get it removed she is going to pull it out anyway. Carly has one more week until school starts. She is actually ready to go back and misses her friends. I am ready too! I took her school shopping last week and oh my how her tastes differ from mine. Apparently she wants to grow up a little and I am really having a hard time accepting that. We are both learning to accept compromises that we can both live with. Ultimately it is my decision but I want her to also trust her ability to make decisions and I feel like if I disapprove of everything she picks out then in some way I am telling her she cannot make a good choice. Well, the bed is calling my name so I must go. Goodnight!
Sunday, August 15, 2010
All of the years prior to this one, we had taken our own beach pictures. This year my generous sister hired a photographer to take them. Thank you so much sweet sis! And thank you to GwyneMark Photography for their services!
Does it get any prettier than this?
Wednesday, August 11, 2010
Dr. Hernandez's nurse called me promptly Monday morning and asked that we go on Tuesday and have a Tegretol level drawn. I had to work so Kenneth took her and got that done. The nurse called back today and said the level was in the low normal range so they increased her Tegretol in hopes of getting better seizure control. I hope it works! I also got a call from his office today to try and reschedule our appointment with him from August 31 to sometime in September. I am usually fine with that but not this time. They reschedule more times than not. I explained to the girl that Anna has new onset seizures that we are trying to handle over the phone and that I scheduled her other Cook's appointments around that appointment. She said she would email Dr. Hernandez and see what she could do. She called me back within a few hours and he agreed to still see us that day, just at a different time. I was so thankful!
We told Carly today that she has a baby brother or sister on the way. She was and still is beaming with excitement. I wanted to wait longer but the worse I feel, the less energy I have to do things with her. I want her to realize it isn't her, it is me. She was so sweet and told me how I should get a nap everyday now. I hope that kind and gentle attitude stays! Carly told Anna but I do no think gets it in any way. She went on talking about pancakes and butter after Carly told her. The kids are already in bed as we wind down the "summer hours" so I am on my way to lay my head down as well. Goodnight!
Saturday, August 7, 2010
Tired- check. Nausea-check. It is beginning to sink in that this pregnancy thing is for real. I am trying very hard to believe that this pregnancy is going to go well but I also live in reality and so I have my doubts. Since the reality of pregnancy is setting in so is the reality of what is probably to come. I am already on 200 mg of labetalol 3 times a day and my blood pressure is good at rest but already 150/80's with activity and I am only at 6 weeks. I see a medication increase in my near future. I think there is a part of me that thinks this baby will never make it home and so I am reluctant to get too excited or let myself think of what it will be like to have 3 kids. I know that sounds morbid but if you have been where I have you would understand. I am not without faith and hope. I know however that sometimes the greater plan does not always mean that things will be teddy bears and rainbows. I do know that whatever happens will be ok and that God will provide what I need to get through it. I promised to be honest in this blog and so there you have it, that is how I feel right now about this pregnancy. I was diagnosed with preeclampsia at 24 weeks with Anna. If I was to get it again that early and have to deliver I wonder what I would do. Would I want them to do everything to save the baby or would I just savor the moments with it and let it go be with God until we meet again? I know that a 24 weeker can survive but at what cost to that child? I know there are many who have done it and I think that each person has to make that decision for themselves. There is no right or wrong way when it comes to this. But what is right for us, I don't know? I am not worried, per say, I just think these are questions we have to be prepared to face. I would rather be prepared and not have to face them then to never consider these possibilities and then have to make a decision in the worst possible moment of my life. I will be so glad when I hit 28 weeks- that is my first goal.
Anna's seizures had gotten to where she was having about 1 per week. I was thinking that was good until I talked to the neurologist's nurse yesterday. I asked her what well controlled meant when dealing with seizures and she said that is when they rarely ever have them unless they are sick or really overexerted. I told here we were at about one a week except this week when she had one at daycare on Thursday and also one at daycare on Friday. She said we were no where near well controlled and she will be calling me Monday when Dr. Hernandez gets back in town to have a medication increase. After her seizure yesterday at daycare she was out for quite a while. I went and picked her up - not because I do not trust them to care for her but because I know the teacher would be watching her so closely the rest of the day and I don't think that is fair to the other kids. She slept a while longer and then woke up and ate 5 pancakes. She really works up an appetite after a seizure. It is amazing to watch her eat when it is all over. We still have not used her feeding tube since the first seizure happened and for that I am so thankful. I still trust God's plan in her life and believe her testimony is going to be far greater than anything I can fathom.
Carly continues to do well and is excited to get back in school. She says she is going to have "super duper good behavior" this year because she heard the 1st grade teacher is mean and yells a lot and she does not want to be yelled at. Hey- whatever it takes. I hope her teacher is nice though because I think everyone should have fond memories of their 1st grade teacher. She is also working on wiggling her bottom tooth which should be coming out any day. I am trying to decide how much the tooth fairy should bring. When I calculate how many teeth and how many kids, I realize this whole tooth fairy thing could go on for awhile so I better keep the price down. I am thinking maybe $2/tooth will be the going price. She has also mastered cleaning up her room and yesterday learned to vacuum after spilling popcorn all over the play room after she had been told not to take it in there. She is growing up so fast! She amazes me with her compassion for others. I hope she never looses that!
Kenneth has been off for 2 weeks for vacation. It has been so nice having him around all the time. He goes back to work tomorrow though and I will be on my own again. I am so thankful for such a wonderful husband. I could not ask for more. As this pregnancy progresses, he will likely have to be responsible for so much more. And that is fine with him. He never complains but just takes everything in stride. He is such an amazing husband and father and such a blessing to all of us.
So there you have it. This is where I am right now. But oh these hormones, give it 5 minutes and it might change...
Monday, August 2, 2010
On the fence. Not trying but not preventing. That was where we were. We still were not sure if having another child was the right thing to do. Well, apparently it is because we were quite surprised to find out that we are expecting again. We are excited but shocked. I am due on, get this, April Fool's Day. My Dr. said he will do his best to get me to 32 weeks and then anything after that is just icing on the cake. That would put the baby arriving here sometime in February. We discussed that I am ok with lung immaturity but not brain injury. This will be a risky pregnancy. I am going into it with multiple factors that make me high risk but I am believing that we will make it safely to 32 weeks. I am praying that this will be a healing pregnancy that will help me to let go of so many emotions I still hold so close after the last pregnancy. Don't get me wrong, I would do it all over again in a heartbeat to have Anna here, but it still hurts. I am currently taking my baby aspirin daily and hoping my blood pressure stays under control. I am going to go ahead and start eating less sugar and carbs so that if I develop diabetes again it will be easier to switch over to that diet. We are not planning on telling the kids for awhile so if you know us in real life please do not mention in around them. 8-9 months is a long time to hear them saying "when is the baby going to be here" and it is also a long time for Carly to worry because she still remembers last time. Please keep this precious new one in your prayers. I've got my ticket and I am back on the crazy train...