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."