hello food!

Today I gave Emily her first taste of food in over almost 2 months. She was in heaven!

I could not get it in her mouth fast enough.

I honestly did not think she would like it because it was 15 grams of sweet potatoes and 10 grams of canola oil. It looks really gross!

It was not a lot of food either so she was still pretty hungry. Luckily she was tired so she fell asleep shortly afterwards.

I think she may start teething soon. She still does not have one tooth but she is drooling soooo much. I had to take this picture it looks like a drool beard. haha!

sched

This weekend was pretty uneventful for us here in the Rollins' house.

On the weekends Joe really helps out a ton! That mean sleep for mommy!

Emily is such a night owl, normally she won't go to sleep until somewhere between 4-6am. Yup you read that correct. It is currently 2am and she is no where ready to fall asleep.

Everyone keeps telling me to sleep when she sleeps. That would be ideal BUUUT her schedule in the morning is a little busy.

I get up between 6-7am to take her off her feeding pump.

9am meds, g-tube care, change diaper.

10am check blood sugar, bolus her tube feeding (since she is sound asleep)

Fridays she has PT at 11am

2pm bottle or tube fed

3pm meds, g-tube care

6pm bottle

Mondays she has OT at 6:30pm

8pm make the formula for the next day

9pm meds and bath, g-tube care

10pm bottle

1230 am start tube feeding

3am change tube feeding(it clogs if I put to much in at a time)

start all over again.

Plus I have to make appts, talk with home health, nurses, insurance, people wanting their money (ha!) and at some point during the day I have to eat. So my point is I love the weekends!

Joe gets up around 6am and let me sleep as a long as I want to. Yesterday I slept until 1:30pm! It was pretty heavenly, plus he does lighten my load too with helping out a lot with all of Emily's care.

So this weekend I changed out Emily's clothes from winter to spring and summer clothes. I love summer clothes for little girls, they are just too darn cute!

Emily did not have a seizure free weekend but the few seizures she did have were super short, I think the longest was 15-20 seconds, but most of them were under 5 seconds. Before the ketogenic diet she would have countless seizures in clusters for hours so we have seen a HUGE improvement.

She has gotten such a personality to her lately too. Joe was holding her and he laid her down on the couch for a little bit and she laid there saying dada over and over until he picked her back up. She definitely has daddy wrapped around that tiny finger!

Also Joe and are such procrastinators. We just got out taxes done. On our defense we have been in the hospital a ton lately and that was the last thing on our minds. Since Emily was up until 10am that morning she slept through the whole thing!

Boring

Yesterday was a pretty boring day. Those of you who have kids or family members with seizures know that boring is GREAT!

I am always too afraid to say out loud that she had a seizure free day, I guess I think I am gonna jinx it or something. I know better though, me saying that out loud will not make her have a seizure.

So I will say it, since Thursday at 7:48pm Emily has not had any seizures! It is 2am now and there is no telling what the rest of the night holds for her.

I have got to learn to rejoice the good days. When she does have a seizure free day I feel like I am spending the day looking for a seizure instead of enjoying that time with my (way too fast growing) baby.

I know the ketogenic diet is helping so much. Before the diet she never had a seizure free day and now they are coming more often!

She is talking a lot more too. Today she was making L and O sounds. The other day Joe wanted to hold her so he started to pick her up and with the tone of a teenager she said daaaad. It was the funniest thing ever! He promptly laid her pack down and she was fine.

So I am praying that the rest of this weekend is boring.

Hope y'all have a great weekend too!

I love you

So I think we are going to start Emily on baby food again! Before the horrible side effects of her many seizure meds Emily was a fantastic eater! I made all of her baby food and she was not picky at all. She loved her veggies most though.

She slowly quit eating and it was so sad for me to see her not be able to eat. The past few days though she had tried to bite whatever comes close to her mouth! It is kinda funny. So I think she is ready.

So I got several ketogenic recipes from our amazing, wonderful, and newly engaged ;) dietitian, Stacy. I am a little nervous about it though. Change in anything with a seizure kiddo can bring on seizures so I am praying for a smooth transition.

I just wish there was something I could do to get her to sleep at night. Currently it is 2:10AM and she is squealing and kicking with delight. Don't get me wrong I am to the moon happy that she is in a good mood, I would just love to sleep at night because though the night there is less care to be done for her. In the morning, when she sleeps the best, I have to do her meds, g-tube care, feedings, make phone call, appts, deal with crappy home health companies (haha! can you tell i don't like them?) and it does not make it very easy for me to get good sleep.

I got a video of her last night, I say I love you to her probably a million times a day and last night it sounded like she was trying to say it! Just ignore me repeating myself over and over.

I was trying so hard to get a picture of her smiling but she would only smile after the flash went off. Also I understand that there are a few students in Mrs. Rollins class that check-up on Emily and like to see her pictures so I put this one on her for you all today. Thanks for thinking about Emily I told her that you all think she is cute and she smiled!

rough

Emily did not sleep well (as in not at all) yesterday night in turn she seized all night and that keeps her from sleeping so when Joe got up for work at 4am I had not had a minute of sleep yet.

Emily had a long doctor appt today too so I already knew this was gonna be a rough day.

We finally fall asleep around 4:30 and just before 5am Joe wakes me up saying he was having chest pain. It was so bad he could hardly speak. Needless to say it scared the crap out of me. He was putting dishes up and he said a pain hit him so hard it almost doubled him over. He thought it might have been a muscular pain and tried to changed positions and breath through the pain but he just could not. I did not want to take any chances so we packed up and headed to the ER.

Luckily I had already packed Emily's bag for the day so she was pretty much ready to go.

We got there and there was literally one other patient so Joe got back very quickly and seen by the dr.

Chest x-ray, eeg, and blood work were all normal. They said he must had just pulled a muscle, gave him some pain meds and sent us on our way.

We were home by 7:30am. I know totally impressive for an ER visit by our family! HA!

I finally got 2 hours of sleep then had to peel myself out of bed and head off to the Dr. We are still in the same pediatricians office just switched to a different doctor in the group. She is a little more experienced with Emily's care.

I had mixed feelings about this because I have had mixed reviews about this doctor, but ultimately its up to our instincts and how we feel about them. We also met with her nurse who I am sure we will see more often plus I have learned that you talk with the doctors nurses a ton on the phone so it is good to build a good relationship with them. Joe and I were both very impressed!

I had not realized how much I was trying to do my by self and how much more help there is out there for Emily. I told Joe when we left I just felt like I could breath. Heidi (nurse) is helping us out a ton with calling companies and dealing with crappy home health company. She is also calling our insurance to see if we can find a way around crappy home health company. She is also seeing if we can get a nurse a few hours a week or more to help out.

I know there are a lot of family and friends who want to help us so much but it is just so hard when you are not medically trained because Emily's seizures are nothing like a normal seizure and her seizures change all the time.

I pray that one day we will be able to have family and friends be able to watch Emily and help us in that aspect. For now there is still a ton of things that you can help with. Cleaning my house is probably the last thing that gets done,not that it is getting done. I just told Joe last night I have no clue when the last time i vacuumed was. We have been having a couple meals a week from church brought to us and that is a HUGE help! Things like mowing the grass so that on the weekend Joe and I can spend time together with Emily or go to the park is another huge help.

The weekend is the only time Joe and I really see each other because when he gets home from work I try to take a nap so that I can be up with Emily all night. So when the weekend comes we try to get house/yard work done or go the grocery and that leaves us with little to no time together.

So while right now watching Emily is not area that can be helped, I would love some people to spend time with us so that they can begin to learn more about taking care of her especially if there is an emergency with Joe or myself they can at least be familiar enough with her in that situation.

Oh I almost forgot! Emily is in the 10% for her weight and head circumference! She has been in the 2-3% until now. She is below the 2% in her height though. She weighs 16.5 lbs!!

Great weekend!

Emily had her first Easter and it was a great one! Want to know why it was so great?

It is because is was a seizure free weekend!!!! That is right, her last seizure was on Friday at 1:50pm and she went all the way until now :( 1:00am. It was just 2 little single ones.

She slept so much better this weekend and she was so talkative! I think at one point she sad momma for about an hour and yesterday she was on a dadda kick. It is just too darn cute!

I think she is trying to say hi now too. I say it every time I pick her up and she will mimic me.

Joe's mom and step dad came down on Friday and stayed the night and they got to see how much more alert and talkative she is too. She laughed so much on Friday night.

It was such a blessing to see her like that.

I also broke out her summer clothes. We were very lucky to have a couple people give us some bigger hand me downs and I thought I would just see if the 12 month fit and they did! I was very shocked because she has always been so little but she if finally growing.

Sunday we finally got to go back to church! We have missed going so much. We have such a wonderful church family and they have done so much for us, it is hard to not see them every Sunday. We had such a warm welcome, I told Joe when we were leaving that I smell like so many different perfumes and colognes from hugging every one!! haha

My friend Rebecca took this during church. It is such a beautiful picture!

The message was great, worship was amazing as always. I listen to Christian music through the week but there is nothing like a whole church congregation lifting their voice to worship Jesus!

So I guess the last thing is some Easter pictures! I took a ton so I will edit them down. I know I never take pictures of this kid. :)

We colored Easter eggs, she was not too interested.

She would not stop talking long enough to get a picture.

Again, would not stop talking and I was trying to get her shoes but she was such a wiggle worm I could not get it all in. :)

After church she was so tired.

My favorite!

I hope you all had a blessed weekend!

Eh

Eh, is how I feel. Not great but not the worst that I have been.

Emily has been seizing everyday. Some days are better than others. She has had a few seizure-free days and those days are fantastic! It just makes the days when she does have seizures seem worse.

She has only been on the ketogentic diet a couple weeks and we have seen improvement in the length and frequency of seizures but no amount of seizures is ok.

Emily's seizures are mostly tonic-clonic and come in clusters. Some only last 2-5 seconds and others will last 30-45 seconds. The past few days she has begun to have single seizures lasting just a few seconds and not going into clusters. Yesterday she had 2 clusters one was 13 minutes that had about 7 individual seizures and the other cluster was over 2 1/2 hours and I have no idea how many seizures were in that one.

So some times I think things are getting better than she has one for 2 hours.

I have heard of some kids seizures getting better after they began to wean off some of their seizure meds. Emily is currently on klonopin, phenobarbital, and levocarnitine routine and lorazepam and diastat for prolonged seizures.

I would love to wean her off klonopin but she has been on it for a long time and weaning will need to be very slow so she does not withdraw from it.

Also if I may continue to complain for a minute, I am not very happy with Emily's home health company. Professional and helpful are the last two words I would use to describe them.

We had a fantastic home heath and a wonderful tiny portable feeding pump through them but fantastic home health can not provide Emily's ketocal formula so we had to go through crappy home health and they threw a hissy fit and said they would not provide her formula unless they provided her pump WHICH would be fine but they will only give us a hospital grade 79lb (kidding) feeding pump. GRRR! I tried to get the formula through WIC but Indiana chose not to provide that formula but KY WIC does.

So after all that complaining I compare my suffering to Jesus'. Kinda makes you stop stop complaining a little huh.

As I am typing this Emily has fallen asleep (for a little while at least) and she looks so perfect. She is perfect in every way because God made her perfect. Not our idea of perfect, but His idea of perfect. Just like to Mary Jesus' death was not perfect by any means to her, but to God it was perfect. The wonderful thing though is a few days later Jesus was perfect to us all! One day Emily will be perfect to us all too! That is the promise we have in Jesus. He died so that we can one day be healed and be perfect with Him. I keep my faith in Him.

Happy Easter. I pray that you celebrate the true meaning and find comfort in His resurrection.