Weight loss 7/21/2015

I know it's been a while, and I'm sorry for that. Some new updates:

Raelin has lost 3lbs in the past month. Both her regular pediatric doctor and GI doctor cannot figure out why. She is still receiving her same amount of food and calories but for some reason she has lost weight. Not good. She is currently weighting 15 lbs and 12 oz. she was 18.5 lbs. so we went to see Dr. Blumenthal (GI) yesterday 7/20/15 and we have raised her calorie intake to 700 in 24 hours. Plus we are starting to introduce baby food to her. She seems interested in it so that's good! Hopefully this will let her pack on the weight again. We have to keep a food journal to let us know what all she is eating. 

Positive note she has been doing really well with her seizures. We started her on a new medication and it seems to be doing well for her. Hopefully that will continue. 

In August we plan on having an MRI and another surgery done. The MRI will be for us to see if the brain is communicating well to both sides of the brain. The surgery that will be done is for her button. She currently have a GTube and this is another form. Dr. Blumenthal  said it is a 5 min procedure and with be very simple. The thing that worries us is both times she will be under anesthesia so hopefully we can do it the same day. 

She also has an eye appointment in August. Hopefully we can either get her some glasses or get pointed in the correct direction for her lazy eye. We believe this is why she favors her right side more so than the left.

We got her Kid Kart earlier in July and Rae is LOVING IT! She is able to sit up like a big girl and practice holding her head up. She is becoming so much stronger and wiggling around all the time. We are so pleased with the kart. 

Will update when we know more. Thank you for all the prayers and support! 

Seizures 3/9/15

Hello everyone. Just wanted to update everyone on what's going on. 

For the past week Raelin has about an average 4-8 seizures a day. Very scary for us. For those who don't know, when Raelin has a seizure or what I call an episode, she tends to hold her breath (hints the oxygen) and will turn blue/purple at times. Eric and I are not sure on what more we can do for her. All her doctors are saying that we are doing the right things here at home. But part of me still thinks there is more we could do. It breaks my heart for our sweet little girl go through this. She loses all contact with us and is like a "zombie". Then when she does come back she is very confused and gets upset. She doesn't want to be touched or bothered. Then she will fall asleep. Doctors say these are normal for epileptic  people. But again it kills Eric and I. Please keep our sweet girl in your prayers and that we will get an answer to why this is. And that she will get the correct dosage to ease this pain.

Tessa is confused and very bothered when she witnesses these episodes with her sister. And as parents, this adds another pain for her.

i just keep telling myself that God blessed us with our sweet child for a reason and that this will all pass. It's just getting there that is the struggle. 

-Lord, at the moment nothing seems to be able to help the loss I feel.

My heart is broken and my spirit mourns.

All I know is that Your grace is sufficient.

This day, this hour

Moment by moment

I choose to lean on You,

For when I am at my weakest Your strength is strongest.

I pour out my grief to You

And praise You that on one glorious day

When all suffering is extinguished and love has conquered

We shall walk together again.

 

(a modern prayer for strength from www.lords-prayer-words.com)

Weigh in!

Our sweet girl is 15lbs 12 oz!!! We could not be happier :) our little fatty is get so big now. One happy mommy!

Questions- 3/6/15

Hello everyone. So today was the first day that our oldest Tessa asked me why her sister had seizures and asked what they are. This stunned Eric and I. Not is the aspect that she asked just in a way on how to explain it to her. Tessa is 4. She has seen and heard so much the past year on all the different things that her sister has to deal with. So my question is for all you who maybe reading this... How would you explain this to your 4 year old. We tried to the best way possible but was unsure of how to explain it the best way for her to understand. Any suggestions would help. Tessa does understand that her sister is different and has to have special attention because of these needs. But we do our best to keep her involed and try to explain things the best we can to her. 

Thank you for the help! :) 

Sitting up!

Tonight was a big night for Raelin! She sat up on her own! I placed her in a sitting position and she was able to sit up for a couple seconds before falling back over. So proud of our little girl! This is huge milestone in her life :) 

2/13/15 Sitting up!! 

Great news!!!

We are home!! It's about midnight but we made it home! :) they ran some tests and everything came back clear so they did discharged us. She does have an infection but nothing of concern to stay there. Just need to closely monitor her while we are home and lots of follow up appointments. 

Just glad to be at home :) 

2/12/14

So we are at the hospital again! End came and picked us up. Not sure how long the stay will be this time. Hopefully not too long. We went in due to her having another seizure which lead to her vomiting. We are praying that she did not aspirate in her lungs. We got an X-ray done so we will know more when those come in. 

Keep princess in your prayers. 

Surgery Day 1/23/15

Raelin went into surgery at 9:17 am this morning. Very nervous mommy daddy, and big sissy! However Raelin did a great job and is out of surgery as of 10:15 am. The doctor said she was excellent. They are sending her to the recovery room and said we should see her after that.

Will update later. 

-peanut has been doing really well. We had only one issue. She decided to have a seizure so the poor princess was given some meds to stop it. Other than that she has been healing great. Hopefully tomorrow we will be able to start feeding her through the tube. 

1/20/2015

Hello all!

Today we had Raelins pulmonary appointment and pre-op for her surgery on Friday. All went well. We still plan on keeping her on her oxygen for the next couple of months. This is because she doesn't like to breath while having a seizure. We are still unsure on what is causing her seizures but we do know that a reason she will seize is over stimulation. But still unsure on what else can cause a trigger. 

The pre-op went well she looks healthy and happy and ready to go for the surgery. Eric and I are extremely nervous but we both know that this is what is best for our little girl and we know that it will go smoothly. Just being parents I guess. Ha 

We plan on being at the hospital all weekend to make sure she heals well and that Eric and I know and understand how to properly clean and take care of our princess. 

Please pray for us and for a healthy and easy procedure. Tessa is a little confused  on what's all going on but that is to be expected. She just wants to make sure her sissy is happy and comfortable and will come home the same way. :) 

We will try to keep everyone updated as much as possible. 

Love you all! 

Birthday Girl!!

Raelin had her first birthday yesterday!! I cannot believe our little girl is one! She has been doing well and we have her g tube surgery on Friday 1/23/15. This is a tube that will straight into her stomach so it will no longer go down her nose. Nerves are through the roof but was happy to enjoy out sweet baby's first big day!