Still In Destin

The view from our balcony

Anna after dinner one night at the Back Porch Restaurant (I highly recommend it)

Sam, Carly, and Ainsley at the pool

My very own Zhu-Zhu Pet

We are still in Florida and having a blast. This has been a great trip for so many reasons but mostly because I have gotten to spend time with my family. Carly has had a blast with her cousins. She had big plans to go on the zip line at the wharf tonight but once she got up to the platform to jump off she totally freaked out. She came down crying because she thought we would be disappointed in her. We calmed the tears by letting her become a human Zhu-Zhu pet in this thing called a human hamster wheel. Anna had a seizure the morning we left to com here but has not had another one since then. She was really fussy the first two days and then started running fever today. I wonder if the day will ever come that we take a trip and she doesn't get sick. She has not really enjoyed swimming either because she gets cold so easily. I really think if we come back next year we are going to have to get her a wet suit. I am beginning to think this may be the only way she will ever really be able to enjoy the water since she has no body fat. Poor kid. She is still eating like crazy though and we are still very pleased with that. I have some huge news but I am going to keep it a secret until I get home. Is the suspense killing you?

Free Peptamen Jr 1.5

When we switched Anna to Elecare we had unfortunately just ordered Peptamen Junior 1.5. The company of course won't take it back which is totally understandable, but what am I going to do with 2 cases of tube feeding we don't need? If you need it please email me and I will be happy to give it to you if you will pay for the shipping. I have 2 unopened cases, each with 24 8 ounce cans of Peptamen Junior 1.5 with PreBio. It expires June 2011. This is quite a bargain since it retails for about $300/case. I just don't have room for it and the Elecare. Or if you would prefer you can buy me a bigger house, ya know, whatever works for you.

Speaking of Elecare, we haven't used it in over 2 weeks either. Anna is eating everything in sight! She is even asking for seconds. She ate 12 donut holes and a chocolate donut for breakfast today. It is amazing to see her eating so much. I pray this continues.

She has been seizure free for 10 days now. My mother in law had not seen in her in about 2 weeks but she kept her today so I could clean house and pack (neither of which did I get done). She was astounded by the changes in Anna. She is not only eating more but talking more also. She was also amazed at how much different her sleep is, also. Her sleep is not better as far as duration but it is better as far as quality. She doesn't toss and turn near as much. She is also not waking up thirsty all of the time. I am beginning to think maybe the seizures had been going on longer than we thought and we just didn't know it. I will never know the answer to that but it really doesn't matter. I just rejoice in the fact that she is doing so well now!

Pity

I love this post from Ellen and think it is worthy of a link! One of the things that makes me go crazy is pity. I don't want it and I don't need it. It is OK to ask questions...just don't pity.

Waking Up?

I cannot find the logic to explain what has happened and I didn't believe it at first but it has continued so I really now think there is a connection. The Thursday that Anna had her first seizures, she started eating. I don't just mean nibbling. I mean eating. Volumes. So much that we have not tube fed her since that day. We went from struggling to get her to eat 2 bites to her wanting to eat 2 servings at each meal. She is eating all types of foods and textures without any problem. I know it is probably wishful thinking but I wonder if the seizures could be her brain "waking up" from the damage. Since we stopped the tube feeding we also stopped the erythromycin that she was getting to help her motility. Apparently that was a good decision because it can raise tegretol levels. The neuro's office called today to tell us to go get a tegretol level due to the erythromycin but since we had already stopped it we were able to not do the blood draw. Anna went back to daycare today for the first time since the seizures started. I am nervous but I have to let her be a kid. Her teachers are awesome and I know they will keep a watchful eye on her. I again realize I am so blesses to have a place I can take my special needs child and know she will be watched closely but still be allowed to act like a "normal" child. Again, I realize that Anna has taught me to find the blessings in things I never imagined before.

Another Normal

Tegretol Naps

Today brought on doses 2 and 3 of Tegretol and a lot of sleep. Anna slept the majority of the day today. I guess if there has to be a side effect that one isn't too bad as long as it is temporary. She has been a little cranky too but I think it is mostly because she is so tired. She will start to get really cranky and then go to sleep. The good news is that there have not been any seizures today. Of all of the emotions I have about this whole situation, the prevailing feeling is one of sadness. I am sad that Anna has another obstacle to overcome. I am sad for Carly because she is sad that her sister has to be "that way." I am sad that Carly sometimes feels like and probably does take a back seat to what is going on with Anna. Sad that Anna needs more medication. Sad that when life finally felt a bit "normal" for us that we are back to the abnormal. Sad that we didn't beat the odds, again. But for all of the sadness I have to say that we are all still OK. I think that after being told 2 years ago that our child would never be "normal" there is some part of you that is always guarding and expecting something else to happen. It isn't hopelessness, it is just the reality of life with a special needs kid. So while I didn't really see this coming, I wasn't totally blindsided either. The hardest part has been the conversations with Carly. She is old enough to know things are not right but not quite able to grasp it. It is actually kind of cute the way she says "see-jure" (seizure). She asked me the other day why Anna had to be born this way. I explained to her (while choking back the tears) that God allowed Anna to be this way and that he is a really smart God who has a plan for her life and for ours too and that although we may not always like it, we must trust that he knows what he is doing and that this will all work out for good. I really believe that and I hope that she does also! It is so crazy the way men and women worry about such different things. I am worried about the medicine and hospital stays and regression and such and he is worried about if she will be able to drive. I kindly explained that we have 14 years to get to that and hopefully she will outgrow this or it will be well controlled by then. He is currently out mowing the yard in the dark. I think he does his best thinking out on the riding lawnmower, alone. If you have a beer while on the riding lawnmower is that drinking and driving? Or does it just make you really redneck? Just wondering. I am going to go to work tomorrow. I feel pretty confident that Anna will probably just sleep all day again. Carly is out at the lake with Kenneth's sister and her husband's family. She loves to be with them and I am glad she got to do something special during the times when things are tough around here. Things are going to be OK. I really believe that. I do not like what has happened but I know we will all be better people for it. Sometimes God calms the storm and sometimes he lets the storm rage and calms his child...

Tegretol

Anna had another seizure today and this one was worse. It lasted about 1 1/2 to 2 minutes. She slept for about 1.5 hrs afterwards. I got in touch with the neuro's office and I was glad I did because Dr. Hernandez is leaving tonight and will be gone for 2 weeks. They said the first option would be to put her inpatient in the EMU (Epilepsy monitoring Unit) at Cook's and try to catch something on EEG. Her one from the other day was preliminarily read as normal. The problem with going to the EMU is that Dr. H will be gone and we would have to start over with another neuro in the group and I just don't want to start over. This is already our second neuro since our first one went back to teaching and I just don't want to have a third. The end result of the EMU stay would ultimately be medication. The second option was to go ahead and start medication and see how it goes. I chose the second option. If things are not better within the two week period which will give her enough time to get a good blood level of meds then we will do the EMU. The EEG that was normal basically amounts to, well, nothing. It means that during that 30 minutes there was not any seizure activity. The purpose of the EEG is not to see if there are seizures or not because that comes mostly from history but it can tell them where the problem is originating so that the best medication can be chosen (from what I understand). Anna started tonight on Tegretol. I am praying this will be the medication for her. I have so much more to say but again I am exhausted and running on fumes so I think I better go to bed. I took off work tomorrow because I just didn't feel I could start Anna on this new med and then go to work. I'll try to get rejuvenated and tell you how I feel about all of this tomorrow. Thank you again for all of your thoughts and prayers during this time. Keep them coming...

I Think Dante Must Have Had An EEG

This post will be short. I have volumes to say but cannot hold my eyes open any longer and I have to work tomorrow. I tried to take a nap today but my mind will not stop racing and trying to wrap itself around what has happened the past few days. I would be lying if I said I was not scared to death to leave Anna tomorrow, but I have to. I promised to update tonight so here I am. The sleep deprivation was a visit to the 8th circle of hell and the EEG itself was the 9th circle. I am certain this is what Dante must have been referring to in his book. Anyway, the test is over and we know nothing. We should hopefully hear back from the neurologist tomorrow and get a game plan. The EEG can show seizure activity or not- it does not either rule in or out the diagnosis of epilepsy. The diagnosis is more based on seizures- which she has had. I am expecting she will need medication. I will update tomorrow after work when I know more.

I Wanted So Badly To Be Wrong

Of all the times I have wanted to be right, this just wasn't one of them. Anna had one staring episode yesterday but I was not sure if it amounted to anything so I wasn't too worried. Then today we were in the car and I noticed she just looked really sleepy. It wasn't a normal sleepy look, there was just something different in her eyes. We went into McDonald's and Carly and her friends were off playing and I was holding Anna and waiting in line to order. She started staring off into space and kind of twirling her hair and then she started convulsing. It only lasted about 10 seconds but it felt like an eternity. After that, she was fine. There is no more denying it. Anna is having seizures. I called and talked to the Neuro's office again and the nurse called me back quickly. She told me to continue the EEG plans for tomorrow and she will call me back in a little bit with further instructions. I will update when I hear from her.

Within The Realm Of Possibility

I debated about whether or not to post about this until we know more but then I decided that any extra prayers couldn't hurt. We were told to always be on the look out for seizure activity in Anna. We were also told that if she made it to age 2 without any then we might have escaped them. Anna is 2 1/2 and so far no seizures so I was pretty sure we were home free...until yesterday. I got a call from the daycare that Anna was complaining of a stomachache. I had them turn her pump off and then went and picked her up. Her teacher told me what transpired after the pump was off. I thanked her and went on my way, not really too concerned but glad they called me. We headed home and on the way home Anna started saying,"Kacy, Kacy, Kacy..." almost like a chant. She then let out a horrific sounding scream, stared blankly out the window, and then fell asleep. I thought it again was strange but still was not too concerned. Then on the way to dinner last night she repeated "Mama, Mama, Mama..." like a chant again, let out the scream, and began the staring but this time she got kind of rigid in her car seat. We were all yelling at her and talking to her and got no response from her. She then went to sleep again. After the third time I could no longer deny something was happening. Kenneth agreed after seeing her. I called the neuro's office today and he said it sounds suspicious for seizure activity. She will have a sleep deprived EEG on Tuesday and until then we are just to watch her and report anything else that happens. I am not really afraid because even if it is seizures I know she will be ok and that this is just another bump in the road. I also know we could use any extra prayers we could get though so if you have a second could you send one up on our behalf?

Back To Elecare

They wanted to go swimming but it was raining. I compromised with the kiddie pool in the yard.

This is still a 12 month bathing suit. Grrrr

I finally talked to the dietitian yesterday and we decided to switch Anna back to Elecare. Thank goodness it is going through her tube this time because that means the insurance will help pay for it. It is something like $40-50 dollars a can and our budget just cannot handle that right now. We will have to add Duocal to get the calories back to 1.5/ml but that is fine. We have used Duocal before and Anna seemed to tolerate it without any problems. She also was able to tell me how much free water to add. I feel like we have a plan and I feel relieved. She said Anna needs about 1400 calories/day. We are no where near that now but hopefully will be able to get there soon. I did give Anna a 4 oz bolus yesterday and for the first time ever, she didn't puke after a bolus. She didn't complain about a stomach ache either. Yay for Elecare! The only downside is that it only comes as a powder so we have to mix it where the Peptamen came as a liquid but that is s small price to pay. I guess it will be easier to travel with though so that is good.

I took Carly for her 6 year old well child check and Zoloft check today. All is well with her. She is 49 lbs and 49 inches tall. That is 95% for height and %75 for weight. Her BMI is like 25% so she is at a low risk for obesity. I am so glad she got her build from her daddy! I do not want her to have the fat battle that I struggle with. Dr. Goff said she is doing "perfectly." It feels so good to hear a doctor say "perfectly" when referring to my child. I rarely hear that when we are at the doctor since we are usually there with Anna. Not that Anna is any less perfect, she just isn't medically perfect.

I am off work for the next 6 days. I did not really plan for those days off but it just worked out that way. I am not sad about it. Kenneth took a day off too which for him means 5 days off so we can enjoy some time together. We might even fit a date night in there. Just the two of us, together. What a concept...

Scatterbrained

There is not one certain thing on my mind today. I am actually quite scatterbrained. A bulleted post maybe you say? Good idea, I think I will.

• I am waiting on the dietitian from Dr. Ogunmola's office to call me back. Anna has this thirst we cannot seem to quench. Her blood sugar is fine so it isn't that. I think she needs more free water in her tube feeds but I am afraid of overdoing it so I need the dietitian to calculate how much water she needs and what her calories need to be at now that she is losing weight again.
• I am pretty sure the pyloroplasty will be happening sometime soon after we get back from vacation. Anna's oral intake is crappy.
• I took Carly and Kacy swimming today and it started storming on us. Boo! Anyway, I went after that and picked up Anna and took all three of them to their Meme for the night. Kenneth is on duty. I am all alone tonight and could not be happier. I need a few moments to just chill by myself!
• When I took the kids to their Meme, I had to drop them off in the parking lot at Dr. K's office because Meme had taken Collyn to see anther Dr. in that practice. I I drive by that place daily when I go into town and have finally gotten to where I don't get nauseated every time I drive by but the parking lot was a whole new territory. Some days I imagine what it would be like to run into him and have him say he is sorry- most days I know that will never happen. Oh well, I am allowed to dream right. My forgiveness does not hinge on his "I'm sorry" but I think you never stop wanting that anyway.
• The kitty is growing already and is still so sweet. It was a good move to bring him home.
• I am having baby fever again. It is super bad. I had to go for my yearly appointment (I had not been since my 6 week check up after having Anna) and loved the Dr. He has been delivering babies for 25 years and trained at Parkland. He said I should go for it. He says if I get PE early again he would just try to get me safely to 31-32 weeks and then deliver. I left there feeling hopeful. I haven't been hopeful in so long. It felt so good. Kenneth and I are on the fence about it again. I am praying about it. We'll see what happens...
• I am getting excited about going back to Destin this summer. I can't wait to see my sister and her family. I hope the beach is not full of oil, but even if it is we will have a blast!
• We have a 30ish year old patient who has been in our ICU and in a coma for over a month. We had all pretty much (including the neurologists) given up on him ever getting better. His mom would not give up. She just prayed and kept telling us he was still in there. Well, I should know better than to ever doubt a mother. He woke up yesterday. It was truly miraculous and brought many a tear to the eyes of the ICU!
• We had a great 4th of July and hope you did too!

Already 6?

When Carly says her prayers at night, she has been praying frequently for a puppy so that she can have an animal that is all her own. I have told her repeatedly that we do not need another dog so if she wants one she will need to ask Santa Clause and maybe he will bring her one. Yesterday was her 6th birthday. We had already had her party so we didn't have any big plans for the day. She and I went and got pedicures together and then went and had lunch. We were on our way to run a few errands when I saw something in the road- and nearly ran over it. I quickly realized it was a tiny kitten. I went back and got the kitten out of the road. Carly was so excited because the kitty "knew it was my birthday and that I wanted a pet of my very own." How could I tell her no? I couldn't and besides, he was super cute. Never doubt the power of prayer! She named him Cameron. We went by the vet to see how old he was so we could feed him the right thing and they said he looks to be about 8 weeks old. He is so tiny and so cute and sweet. He loves to snuggle. And the best part- he is already using the litter box! After giving Cameron a 30 minute flea bath and getting him settled we grilled burgers and had cake and that was about it. I cannot believe I have a 6 year old. She is so amazing and my life is so much sweeter because she is in it.