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
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Once my nose stops running, I will be over in a flash for some HSM. Love you all.
ReplyDeleteEmily....you don't need to give up hope! I have to remind myself also...it is only a label, and it doesn't define or describe your daughters "being", or person. At least you will be getting the extra "help", which WILL be a big help! Take Care!
ReplyDeleteEmily,
ReplyDeleteLabels that they give to Ellie are just there for the public. I always figured they were made to be changed. Just because they label her SXI right now does not mean that she will be that forever. Accept the help that it gives you now and when she grows out of that label, what a glorious day that will be. Josh is in an SXI class and the degree of disability is amazingly different in all the kids.
God is still in control no matter what and He is able to what seems to us impossible. We will continue to pray for that miracle for Ellie and encourage you not to give up hope but continue working with her and encouraging her to become all that God has planned for her.
Just watched the videos of Ellie that Mom and Dad had on their desktop... it's so good to see her! Love.
ReplyDeleteNever give up hope! As Gwen posted above, it is just a label put on by society. It will get you the help you need but that does not mean the label has to "stick". God can still work miracles. He can still use this for His glory. God is in control.
ReplyDeleteWe're continuously thinking of ya'll...
Praying for God's loving care to embrace you in His peace and to fill your heart with hope and courage.
ReplyDeleteLove and Hugs,
Betsy
It is amazing to think about the road you've been on & to think that it is a road you will continue on for however long God intends. I kept thinking while I was reading your blog, 'one day at a time', 'one step at a time'. I know that's absolutely no comfort! So often in "everyday life" is when God wants us to realize it's about growing our faith & drawing on His strength - day by day, step by step. (something called sanctification?) Remember how long David had to wait after he heard the promise about becoming king? Wasn't it like 40 years or something? Praying for you to have patience, endurance, hope & a love for God as David did in your "every day life"!
ReplyDeleteI wish we could help with the cabin fever, but we are all so sick. Will have to stick to scrabble. Praying for you all!
ReplyDeleteDear Em,
ReplyDeletePraying for all of you and especially for Ellie. We hope that you are able to take Ellie to Cleveland Clinic. We are very thankful that Ellie has been able to make it through the winter so far healthy.
We are in the midst of "high pressure". That means very frosty nights and sunshine during the day! My dafodills are within a week or so of blooming.
Love, hugs and many prayers,
Julie
I found when my son got home from hospital ( also very sick/ major neurological damage) that the home care nurse was very compassionate when she filled out the forms. She gave us a warning that she was filling them out with very strong language with respect to his damage to the brain and problems so that we would be spared alot of problems in the days ahead with any questioning as to whether he deserved the services he was receiving or not ( meaning making it sound really bad so that we wouldn't have any problems qualifying). It was SOOOO devastating to read on paper. But I have to remember what she said -and it did spare us alot of grief in the end as we don't have to keep reapplying for benefits etc. I think on some level likely they are doing that for your beautiful girl.
ReplyDeletePlease remember it is just words on paper. It is impossible to convey on paper the uniqueness and specialness of your daughter and the little nuances of communication she has only with her family. Hang in there. I know just last week my son got the papers saying he is legally blind and it was VERY hard to read. But he is still my son-not his diagnosis.
Love and prayers-
jennifer
Happy birthday, Sethie!!! See you tonight! LoveLoveLove.
ReplyDeleteDear Em,
ReplyDeleteYou don't know me but I am from MI but moved to PA 6 years ago. I can't remember how I came upon your blog site but I wanted to tell you that I have read evey post that you have posted and that I pray for Ellie and your family all the time.
The reason I am telling you this is to let you know that there are people all over that don't even know you but are praying and pulling for you. I am a Christain and a firm believer that your heavenly father is taking care of you, ellie, and the rest of your family. So don't give up hope and pray for peace everyday.
I am sad that right now I am not able to contribute financally but I pray that God pours a Blessing on your family where there isn't room enough to receive.
God Bless You
Miranda
miryum06@yahoo.com