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.

Broken Promises

After Anna's last appointment at the GI, I made a promise to myself that I would no longer weigh Anna except at her appointments. I would feed her all she would eat and tube feed her daily and not worry in the in between times. Her last appointment was in May and I had done so well...until yesterday. Without really even thinking I just threw her onto the scale. What a mistake!!! She has lost weight again. She was up to 26 lbs at her last appointment. I just knew with the progress we made in daytime tube feedings that her weight was going up. I was so wrong. She weighed in yesterday at 23.8 lbs and she is 39 inches tall at 31 months. Boo!!! It is amazing the insanity that comes with an underweight child. I am back to obsessing about each and every calorie she eats. Here is the latest growth chart and I am not really all too pleased with it. I know it is difficult to see but it has length on top and she is 100% and the bottom is weight and she is less than the 5%. I just do not understand how she can be getting more calories and still losing weight. Any ideas?