Ella Update (Long!!)

RachelJohnson

I got to see Kellie and Ella yesterday. I'll start by saying I know I promised pictures (I had my camera in my purse and everything), but as soon as I walked through the doors it was the last thing on my mind. All I could think of was spending as much time as I could with them.

Kellie was soooo thankful of the money, cards, emails, and well wishes. Kristi-she LOVED the taggie. It was adorable! Lindsey (Agee)-I got the package of cards from the daycare on Saturday, so I was able to give that to her, too. So sweet of them!!!

I didn't post this on Facebook simply because Kellie hasn't (she wanted to wait until she knows for sure), but she asked me to go ahead and tell you guys. The doctors are 95% sure of a diagnosis for Ella. They believe she has Conginetal CMV. (This link is very insightful! https://www.wearsthebaby.com/cmv.htm )

Basically, Ella contracted a virus from Kellie in the womb. CMV is a common virus that infects most people at some time in their life, but rarely causes any symptoms or illness. Kellie had to contract it for the very first time during her pregnancy in order for Ella to be affected. They believe she was infected at the end of her pregnancy because most babies are born mentally retarded/deaf/blind/IUGR. Ella was born with virtually no symptoms, but they believe this virus is the root of all of her problems. She can, however, develop disabilities throughout the first year of her life. The good news is this is treatable, and while Ella may develop a disability due to this virus, she will live and no bone marrow transplant will be needed.

Ella started receiving medicine to treat this late friday evening. It will be a while before they will know if the medicine is working and this diagnosis is the right one. If it is, they still plan to be there another month.

I asked Kellie if they needed anything, and she asked that you guys pray this is the right diagnosis. That this medicine makes little Ella get better. She also said that if anyone wants to do something...please give blood/platelets. She said Ella has received blood/platelets every 2-3 days. There is always a need and it can make such a difference in someones life!

This was my first experience with St. Jude, and it is an amazing place! Their patients will never receive a bill, and they are given the best care imaginable. As we walked through that hospital, all I could think was behind those thousands of doors, there is a story. A family. Someone's baby. I walked away so very thankful this place existed. That if I ever, God forbid, was on the other side of that door, I would have a place for my baby. A place for hope. As soon as we got in the car to go home, I looked at my husband and told him that I wanted to give them everything we can. I will never pass up a chance to donate to such a wonderful hospital.

Sorry this is a novel (and overlook my grammatical errors-it's a busy monday!), but thank you for your prayers for this sweet family!!!

star21gazer

I will continue to pray for them that this is the right diagnosis and that the medicine is working.  I have never been to St. Jude's but I am so thankful for a place like that, that helps these families.  I too will never pass up an opportunity to give to that wonderful place. 

crollin

Thanks Rachel for all that you have done to keep us informed.  I will continue to pray for them.  I have always donated to St. Judes & the Ronald McDonald House but really need to consider increasing my donations.  I have been giving blood for a couple of years now.  I feel that it is important to do so being that I am 0 Negative.  Thanks again Rachel!

MannaKay

God bless them! They remain in my prayers!

loyo03

This made me tear up! I am so thankful that they think that they have found the cause. They will remain in my thoughts and prayers!

12106mrsmun

That was very beautifully written Rachel! Seriously, I'm in tears...  We've always been supporters of St. Jude's and it looks like it's time to up our contributions. 

I'm so glad that they think they've found a diagnosis.  I pray that it's the right one and that no bone marrow transplant is needed!

MissLMS

That was beautifully written and made me tear up. You are such a great friend to Kellie and I'm glad you were able to go up there and spend time with them.

As far as St. Jude's, I know you mentioned before some kind of fundraiser for the hospital. I think it would be great to do some kind of nestie gtg/fundraiser for them.

star21gazer

MissLMS:

As far as St. Jude's, I know you mentioned before some kind of fundraiser for the hospital. I think it would be great to do some kind of nestie gtg/fundraiser for them.

I agree Lydia.  

Erin&Gregg07

Thanks for keeping us updated! I am praying for them everyday!

aubie96

star21gazer:

MissLMS:

As far as St. Jude's, I know you mentioned before some kind of fundraiser for the hospital. I think it would be great to do some kind of nestie gtg/fundraiser for them.

I agree Lydia.  

I agree as well and thanks Rachel for keeping us updated.