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. 

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! 

We keep on progressing...

Well it's June 27th, 2014! It's been a while since I posted anything. Lots of good and bad progress. 

Let's start with the bad and knock it out...

Raelin has been having seizures. Thankfully they are not consistent but still having them. We are going on July 3rd to get an EEG testing. Basically a test that's sends shocks to her brain to she how she responds to it. We are very nervous about that! We are also going in July 16th for an other MRI. This time they are putting her under so they can get perfect hits of her brain. Another thing we worry about. However we know God had a special plan for this little girl and our family!

Good news...

She is eating more (still through the tube) and growing like a weed! She is 9 lb 2oz as of last week! Never been so proud of our little girl on growing. As expected she is behind her age group but she is now really starting to talk (coo) and follow us around. She is staying more alert during the day and sleeps all night long!! 

We are so proud of both out girls and glad they are doing well!

Also we took our first family trip to the beach. ( well the first for our girls) and they loved it! Below are some pictures :) 

Thank you all for your support and prayers! 

3/25/14

Hello again. Raelin is doing well! We went to the doctor and had to get three shots and a oral medicine for her two moth check up. She was a strong girl and cry for a second but was fine. I think it was harder for mommy than her! 

She came in with a weight of 6 lbs 7oz! She had been doing so well! We truly think the formula has done wonders for her. 

April 1st we will be going to the geneticist and they will be able to tell us more. Then we will also get Eric and I tested to see who maybe carrying the chromosomal abnormality. This will determine if we should have more kids down the road. Honestly I feel like if we are not able to it will be sad. I would love to have more however we were blessed with two beautiful girls and I can be fine with just that. Who knows what The Lord has in store for us. 

Thank you for all the prayers! Keep them coming. We will update you all later. Have a wonderful day! 

Raelin relaxing after getting her first shots! Tube is still in, just took it out to let her skin breath. 

Our little princess is growing...

We went to weigh Raelin today (3/21/14) she is now up to 6lbs 2.5 oz!!! We are soooo proud of our little girl. The new formula is deffinately working! We are praying if she continues to eat like this she will be 7lbs by next week! She is starting to finally have a little pot belly as normal babies do. Thank you Lord for bring the correct people into our lives to help keep this angle healthy! 

UPDATE

new formula seems to be working great! She had gain 3 oz in two day. Hopefully it will continue to work and she will grow! Thinking the formula is working well! Will weigh her again tomorrow! :)

Formula name: EleCare for Infants 

GI appointment

March 17, 2014- just went and spoke with a GI doctor (gastro) looks like Raelin is still too small to get at button in. The doctor wants is to fatten her up and reach about 8 pounds before we are able to place it in. She is currently at 5 lbs 10 oz. 

the Doctor was even debating about putting her back in the hospital in Atlanta to keep watch, however he said that if we called him every two days with her weight and she continues to grow a little we would not have to go. I would hate to go back. But whatever is best for our little peanut we will do whatever. 

Keep praying for our little princessas we  continue this journey. God has a plan for her. 

Our sweet little girl!

Eyes

On march 6,2014 we went and visited the eye doctor. Good news! Her eyes look strong and healthy! The only thing that will worry us now is that she has a raspberry under the skin in her right eye. This is causing the skin around the eye to be swollen. If this continues to grow and swell then they will need to surgically remove it. Needless to say who wants their two moth old having to go under surgery! Keep praying and I will keep you posted on our little adventures with Raelin Marie!

Welcome to the World!

on January 19, 2014 our perfect little girl was born; Raelin Marie Grube! at 9:53 am she was born and weighted 4 lbs 14 oz and was 17 3/4 long. Many doctors where unsure o what was wrong wt our little princess but after many test we were able to narrow it down. She was diagnosed with a very rare syndrome; Translocation of Chromosome 1 and 9. 

While pregnant we were told many different things ranging from Down Syndrome (best case) to Lisnensipholy (fatal- not living past 2 years of age) so when we got this news we were excited but yet concerned as to what little Raelin was going to experience. 

Unfortunately, not many doctors know what to expect with this syndrome because it is so rare. However we were prepared to deal with whatever was thrown at us. 

Raelin was in the NICU for three weeks (longest three weeks of our lives). While in the NICU, Raelin received all sorts of testings. Her biggest struggle is eating. They put a feeding tube trough her nose that way if she was not able to eat all her bottle or tire out we would still be able to feed her. we even had a Car seat test (since she was so little) if she could sit in her seat for 90 mins with no issues then she would be able to go home with us! 

We were luckily able to bring her home on February 6th, four days after our due date. This was very exciting for us and her big sister Tessa. This will be the first time that she would be able to hold her new little sister and get to actually spend time with her!

Since then we have been seeing a Neuro, Gastric, eye, and Genetic doctors. on top of her regular pediatrics doctor.

Raelin Marie will be two months in 2 weeks and we are so proud of our little peanut! We hope and pray that she continues to grow and gain wight!


Types of chromosome translocations 
a. Reciprocal translocations 
Reciprocal translocations are the most common type of 
translocation 
About 1 in 930 people in the general population have a 
reciprocal translocation 
These translocations can occur between any of the chromosomes 
and involve pieces of any size. 
The translocation arises when an exchange of chromosome 
material takes place between two different chromosomes; for 
example, where there is an exchange of material between 
chromosomes number 1 and number 9 (Figure 7.3). Pieces of each 
of these chromosomes have changed places. 
In this case, where there does not appear to have been any 
loss or gain of chromosome material, the translocation is 
described as `balanced’ 

Figure 7.3: A person with this chromosome arrangement has a 

‘balanced’ translocation’ with the equivalent of two chromosomes 

each of numbers 1 and 9. 

The exchange involves loss of the short arms of two 

chromosomes and fusion of the remaining two long arms 

at their centromeres 

The result is one long chromosome that consists of two 

long arms of either 

- The same numbered chromosome 

- Two different chromosomes and containing either 

one or both entromeres

Joshua 24:15

...As for me and my family, we will serve the Lord."