12/01/2014

We are back in the hospital! :( Raelin was having a continues seizures for about an hour straight. I have never seen her act this way while seizing. It was a very scary experience. However we have her on oxygen and she hasn't had one since last night. The only major concern we have is that she has had a temp. She does have a viral infection and the dr did say that it's very normal for epileptic children to seize before the temps hit. So that was good news that it didn't start out of the blue. But we do want our little peanut to be feeling better and not the yucky feeling. 

Thank you for the prayers and positive thoughts. Will update soon. 

Our Sweet Sleepy Baby :)

Home Sweet Home

WE ARE HOME! 

We were finally discharged on 11/03/14. And Raelin has been continuing to gain weight. She is currently 9 lbs 9 oz!! We are still feeding her a continues 18 hour feeding on the pump and she is packing on the weight! Looking and acting like a whole new baby! 😄

Admitted 10/28/14

October 28, 2014:

I am sure many of you already know, however if you do not our little Raelin was admitted in the Children's Hospital on Tuesday October 28th! This was extremely hard for us. Our Raelin was extremely dehydrated and was way under weight. She weighted in at 7lbs 6oz!! This is not good at all for our sweet 9 month baby. However we immediately got her on IVs and was pumping all sorts of nutrients in her little body. She was so small and fragile. It broke our hearts. Good news is we are working in getting her back to her little happy self and hydrated! We have put her back on the Kangaroo Joey NG pump (feeding tube) and plan on taking her home with it. Eric and I have definitely had really low lows and highs this week. So thank you for all the prayers and support!

Raelin has worked so hard and is continuing to fight! She is one STRONG child for being as little as she is! Must have gotten it from her mama 😝 haha she has been pricked and poked, moved around, in a new environment, and a bunch of strangers staring at her. And through it all she has only cried twice! She has been missing her big sister and forgets where she is but she has been very calm and just taking it in.

We have spoke to many doctors and we are planning on coming home Friday (10/31/14)! Just in time to see Tessa in her costume! 😊 This will only happen if some blood work comes back okay. So please keep praying and keep those fingers crossed!

Will update as I can! Thank you all for your support and we will try to inform everyone when we have the time.

Love❤

October 30,2014:

We have an update- turns out we will not be going home tomorrow after all. Not sure when we will be. She has been getting sick and not able to keep her food down. They have lowered her food again very low and started her back up on the IV. She is so tired. Sweet bunny has been asleep all day. We decided to feed her every 3 hours during the day and a continues feed at night. That way she will just sleep and put on the weight! :) The speech theripest is pleased with how she is trying to eat - not so much the quanity but the quality. Please keep praying for her and will update later. 

Thank you!

Please join us in Circle of moms

http://www.circleofmoms.com/welcome-to-circle-of-moms/translocation-of-chromosome-1-and-9-876092?trk=thread_created#post_5517203

Feeding Update!

So it's been about 3 whole weeks and Raelin has been eating out of the bottle on her own! No tube! This is huge for her and if we can continue to fatten her up we will be in GREAT shape :) 

Thank you for all the prayers! 

Also if you have any questions or would like to know a little more about her Chromosomal Disorder you are more than welcome to reach out to me via email or you can go to rare chromo.org to read about it (link is below)

http://www.rarechromo.org/information/chromosome%20%201/1q4%20deletions%20ftnw.pdf

Thank you! :) 

EEG TESTING

Aug 5, 2014: Epilepsy 

Today we had raelins EEG testing done. It was very intresting! They connected 21 wires to her head and for 30 minutes they watched her brain activity to see if she would have any what I call "episodes" or seizures. Fortunately for us she did. Because of this Dr. Chang was able to she what kind of medication to put her on and how it was effecting her. Unfortunately, he did not go into much detail about what to do just to get her on the medicine ASAP and in 3 weeks come back in to have a evaluation. 

It's been two days on Keppra (the prescribed medication) and all I have noticed is her getting more frustrated andlouder before  each dosage and sleeps all day long. The poor bunny has a lot of changes going on right now. But she has been such a trooper! We are very proud of her! 

Below are a few pictures of her right before we started the test. She did very well and hopefully this will help her tremendously! 

Keep the prayers coming! 

July 3, 2014

Ended up we had to reschedule our appointment to August 5, 2014. We got a call that the doctor was leaving early for the 4th of July weekend. It's a bummer but now we can enjoy our weekend with our little girls without worrying over it. So far she has been doing good!