Ellie Update

greetings.

We went to the neurologist this week and are pursuing more testing. We will start by doing a couple more metabolic and mitochondrial panels. There will also be another MRI in the future. It will not be until Spring though, as they want to put off sending her to the hospital for her MRI until there are less sick people there :) After she has her MRI, we will be going to Cleveland! Everything we have heard and read has been very positive about the Cleveland Clinic; some of the top specialists in the nation are there. We are very excited to meet with them and see if they have anything new to say about Ellie's condition and future. It will take 2-3 months to set up all the details with Cleveland.

Sunday morning, Ellie will be baptized at Harvest OPC. We are very excited to experience this sign of God's grace to her and our family. It will be a joyous occasion for the whole family to be together at church. We have not been there together since Christmas.

We are very eager for Spring and being able to get out more. Even Noah said to me this week: "when will all the snow be gone so that we can run around outside and ride bikes?"

hope you are well-
Emily

Happy Third Birthday!

Three years ago our funny, happy, laid back, little Seth joined the family. He really is such a joy!

Severely Multiply Disabled?

I can't believe it has been 10 days since I posted! Life has just been moving along quickly.

Ellie was evaluated today to be classified as severely multiply disabled. It will help her get more services and help for her disabilities. But as you can imagine, it is not a fun description to think about. I am at a toss up of being realistic about Ellie's disabilities and then also not wanting to give up hope. If you have any idea of how to balance the two, let me know! I am on a roller-coaster ride of emotions.

We have not had any exciting appointments lately. Ellie remains stable, but really is not progressing forward either. She is still sleeping a lot. We are very thankful that she is healthy and has no breathing problems. She will meet with the neurologist's office at the end of the month, and I hope that they have some news about another MRI and referral to Cleveland.

These are the long days of winter. We have major cabin fever and can't wait for Spring. Hope you all are well.

peace,
Emily

Growing...

As of last tuesday, Ellie weighs 11lb 13 oz. Not huge for a 4.5 month old, but she gained a pound over the last two weeks. She is still really long, and has grown out of some of her 6 month shirts by length. She is wearing a 12-month sleeper in the picture.

We've been getting a ton of snow, and the boys really like helping Adam shovel the driveway: