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! 

Late update!

Sorry for the WAY late update however here it is :

We were able to go home on 12/08/14! But this time we brought home some extra equipment then when we came in. She has been dropping or holding her breaths while she sleeps. So we came home on the oxygen and monitor. This way we will know if she decides to hold her breath again. She is still on the feeding tube and feeding great! She is on the 27 cal count and feeds all day and night at 27 ml per hour. Any more she can not keep down. We have also taking her off the Keppra (anti seizure) and she is currently on Ativan and Trileptal. She developed a horrible rash and come to find out she was allergic to the Keppra. So need less to say she is very sleepy- and talkative! Haha 

On Monday (12/22/14) we have a swallow study to help us show where her fluids are going. We were worried that she has been aspirating. And why we are finally doing it now is because she is finally strong enough! She weighs in at 11lbs 14oz!!! The fattest she has ever been!! :) doctors are extremely please!! This means that we can get her g-tube surgery!! Surgery is scheduled for January 23rd at 6 am. So please keep her in your prayers. 

Physical therapy has been going great! Now that she has fatten up she is wanting to do more! Our plan is to have her roll by her first birthday. Very do able since she is almost there. 

I'll try and update more often. Thank you for all the support! 

Pic was before going back to the hospital (during thanksgiving) - thanks uncle Bronson for catching this great shot! 

While in the hospital - showing off the start of the rash.