Posted Jan 13, 2011 9:21am After a long night the Doctors arrived in the room early this morning. We have good news. We will be removing the drain and bandage from Ellie's Head today. The Drain, Drains blood. Ellie is one cranky girl today though. She refused to do anything the doctors tell her. She is on seizure meds, pain meds, antibiotics, & Steriods. She will start to see a speech theropist today. She is kind of cranky fron the steriods but boy is she a trooper.
Thursday Jan 13th Posted Jan 13, 2011 9:56pm Day 10 of our hospital visit. So today has been a very difficult day. Ellie woke up very cranky and has had some problems all day. They did remove the Drain Tube and the bandage on her head but we still have a huge recovery ahead of us. Ellie has been very cranky today, she has been having involuntary movement of the eyes. The brain tumor board met about Ellie's case to review all the facts. So Ellie's one part of her tumor was a Grade 2 the other part we will know more when the pathology report comes back. Also we got word that Ellie has Ischemia (basically blood is not getting to part of her brain) also this is known as a stroke. She does have droopiness’ on one side of her face. She is a fighter and we are doing our best to get through this the best way we know how. I am just praying that tomorrow we wake up and it is a good day of recovery. I ask that everyone prays tonight for a speedy and full recovery. They defiantly think Ellie will be here through the weekend for those of you wondering when she will get home. We still don't know. For now I sleep every night in a chair that pulls out next to her bed. I try to get to the Ronald McDonald House for a short nap and shower in the day while my mom stays with Ellie. Dave is working away everyday so we can pay our everyday bills. Like I told Ellie as long as she has to be here I will be by her side. We are keeping the faith.
Friday, Jan 14th Posted Jan 14, 2011 2:27pm This morning around 4am Ellie and I had a conversation about how much longer she had to be here. It’s so hard telling your child you don't know. But the doctors truly don't know. It could be Monday or maybe not who knows. She is doing much better today. She is sitting up. She still has involuntarily eye movements but not as often. The nurse in charge of her case keeps informing me that the recovery from this second surgery is going to be a long road. She did take a short walk today and is very unstable, but the great news is that we walked. Her right side of her face is droopy and she can't move that side of the mouth. But we are getting stronger every day. She has been such a great little girl through this all. God has blessed me with the sweetest most precious little girl in the world.
Friday Jan 14th Night Posted Jan 14, 2011 11:07pm Tonight I met a mom who was telling me how they are travelling from Arkansas back and forth so her son can get treatment. At this moment I felt so grateful to have such a wonderful hospital with awesome Doctors and staff in my backyard. If we had to travel who knows what would have happened to Ellie in the time frame. Thank you Children’s Memorial Hospital for saving my little girls life.
Saturday, Jan 15th Posted Jan 15, 2011 11:23pm Sorry for the lack of updates today. We were out of the room most of the day. We have had a great day with many visitors. We got to go upstairs to the playroom and watch a play, while visiting with Ellie's cousins and brother. I did get emotional today when we were called back down to the room and Ellie started to cry. It felt like she was saying inside; please just let me be a normal kid for a while. At this point I realized she is not going to live a normal life for a long while. While I thought in my head how her swim lessons and Taekwondo Lessons are being put on hold for god knows how long. How she is very unstable while she walks, how her one side of her face droops while she smiles. The hours of therapy she is going to have to endure. I could not hold back the tears as she was hugging and telling me I don’t want to go back to the room I want to stay here and play. Thank goodness for my family support that helped me get her back downstairs. After he vitals were checked and her medicine was administered we took Ellie for a family dinner in the cafeteria which included, both Great Grandmas, Great Grandpa George, Grandma, Papa, Aunt Kyle, Uncle Terry, Kolton, Kenton, Karson, and of course my little guy Jake. It was so nice to see her interact with the family. We had lots of smiles and laughs. She did get tired after a while and Grandma and Papa brought her back to the room. Then Grandpa and Jolene showed up. We took the party back to her room, minus a few people. Good thing the nurses were nice and didn’t kick any of us out. Today was a good day, Ellie is laughing; don’t get me wrong spunky (cranky) Ellie is still around. She won’t do anything for the doctors she just crosses her arms and says no. I keep on telling them you have to know this child; she is the sweetest and quietest kid you could ever meet. I’m sure most of you can back me on this one. Well for now we had a fantastic recovery day and I still feel so blessed that my little munchkin is alive. Thank you everyone for the posts they make me smile knowing we have such a support group backing us. Check out the pictures I will post in a min.
Posted Jan 15, 2011 11:59pm Dine at the restaurants on the following dates. 10% of all sales will be donated to Ellie’s Fund & you can write a note on a colorful paper heart that will be joined with others and be on display for Friday Feb 11th’s “Hearts & Love for E...llie” Night. This chain of hearts should be able to reach from one side of Lemont to the other with the support that I know we are capable of providing.
Mon 17th - Front Street Cantina- 319 Front St, Lemont Tues 18th - 3 Corners Grill & Tap-12371 S. Archer Ave, Lemont Wed 19th - Stonehouse Pub- 103 Stephen St., Lemont Thur 20th - Slammers Bar & Grill – 1243 State St., Lemont Fri 21st & Sat 22nd- Nick’s Tavern- 221 Main St., Lemont **Karen will be donating all of her tips, both days!! Sun 23rd- This Must be the Place- 206 Main St., Lemont
The Big Event is on Feb 11th at "This is the Place" in Lemont with live music. Put it on your calendar Dave or I will also be attending this one.
Sunday, Jan 16th Posted Jan 16, 2011 7:07pm What a great day in the hospital filled with tons of visitors. Ellie is doing well. They are talking about sending her home early on this week sometime. Possibly as early as tomorrow. She finally ate something other than McDonalds and Donuts today. This evening she finally ate some pasta stuffed shells and Cottage cheese. I was so proud of her for eating a good meal. It’s rough having a McDonalds in the Basement of the hospital. I can't wait till I can get a good night sleep at home in my own bed. I have not been home since Jan 4th. So ready to get back to my life. Have no fear I will still be visiting Children's Memorial on a regular basis. From what I understand Ellie will be having MRI's the rest of her life. Till tomorrow we are signing out with Great news of Ellie healing well. Good Night.
P.S. Thanks Aunt Becki, Stacie, Jennie, Aimie, Dan, Maddie, Kaden, Aunt Sue, Uncle Bob, and a special thanks to MY MOM (WHO HAS BEEN HERE EVERYDAY AND BEEN MY ROCK) For visiting today.
Jan 17th, Monday Posted Jan 17, 2011 10:16pm 2 Weeks 4 catscans 3 MRI's 14 days 13 Nights no sleep 3 neurosurgeons 2 surgeries (both 9 hours each) Dozens of Nurses 3 physical Therapists 2 Speech Pathologists 2 Occupational Therapists Dozens of Neurosurgeon Residents Tons of visitors Tons of Love and Prayers sent our way
Taking Ellie Home PRICELESS Life is good Ellie is home. Thank you everyone for your thoughts and prayers. We have a long recovery ahead of us and we are still won’t know about the next step in treatment for 6 weeks. So for now we are going to focus on Ellie’s Recovery which just from my experience tonight. It’s a full time job, and I have yet to start all the theory.
Our first night home Tues, Jan 18th Posted Jan 18, 2011 2:20pm I thought being home would be easier. Well last night was the longest night ever. I kept on checking on Ellie and I finally let myself breakdown and just cry. I have not done that in days. I just wish I could take the pain away. The amount of meds she is taking is exhausting for her and me. My body finally gave out today and I am writing this from bed for I'm having an MS day. As my mom told me today, I lasted allot longer than anyone thought. Thank god for my family they are helping me take care of Ellie today. Dave is working, we just can't afford for him to take any time off work. Allot of you keep asking what you can do to help. Here is the answer This amazing woman Terri O’Neil is coordinating meals for us. All you have to do is email her and she will let you know what you can do. She is also coordinating all these fundraisers to help us out. Please eat at one of the restaurants for "The Ellie Fund". Tonight, Tues 18th it is at - 3 Corners Grill & Tap-12371 S. Archer Ave, Lemont (They have great food and a kids Menu). They will be donating 10% of proceeds to the Ellie Fund. If you want to help in any way please email Terri O'Neil at firstname.lastname@example.org. I cannot thank everyone enough for the love and support you have provided. Thank you so much.
Thursday, Jan 20 Posted Jan 20, 2011 6:19pm Ellie is a rock star she has been spending her days resting and coloring. Today we both took a giant step. I actually left the house and worked out at the Health Club. I was feeling sick as I was driving there, my nerves were on edge. But my nerves were put at ease when I got there. I could not believe the support from the people at the Health Club. They made me feel so at ease and comfortable. The people of Lemont have been amazing. The other big step was I took Ellie to Costco with me. I never walked so slow and was so careful with my cart driving. We had to get some shopping done while Jake was in school. We both survived the day and actually made us feel much better in the long run. It’s one more step to get back to our normal life.
Friday, Jan 21st Posted Jan 22, 2011 12:02am I cannot get over the love and support of my Terri O'Neil, family, friends and the city of Lemont. It is amazing some of the stuff that is coming in for the Auctions for Feb 11th "Hearts and Love for Ellie" fundraiser at "This is the Place" in Lemont. Thank you again for everyone’s love and support. The owners of all the restaurants and pubs have been amazing. Thank you. As far as Ellie goes today was a good day we had many visitors which included one of my friends who is a physical therapist. He gave me some stuff to work on with Ellie. We are on the way to recovery. I have complete confidence we will get through this. Ellie is a strong little girl who has been through more than anyone should and she is still a fighter. She has been very cranky since the second surgery; we are hoping it’s just the meds and that they didn’t hit a cranky spot in her brain. I would take a cranky Ellie any day, I’m just happy I have an Ellie.
Sunday, Jan 23 Posted Jan 23, 2011 9:48am Last night was a rough night with Ellie. Since the surgery Ellie is unable to close her right eye. All her nerve endings have been killed through the surgery on her right side of her face. She was crying her eye hurt and it took her forever to fall asleep. Hopefully with much therapy we can get most her functions on her side of her face working again. It's a waiting game. As my mom keeps telling me this was a first for these doctors. It’s a rare Tumor and the largest they have ever removed from a child’s head. So time will tell. We just feel so blessed and it is a miracle Ellie made it through two major surgeries within two weeks. God Bless My Baby. Today we are just spending the day relaxing and watching the Bears. GO BEARS. I couldn’t put an update without sneaking that in. Everyone have a blessed Sunday. Hug your children for no one is invisible from getting sick. I always thought that because I was diagnosed with MS there is no way anything else could happen to my family. Boy was I proven wrong. What doesn't break you makes you stronger, and boy our family is very strong. Thanks for all the prayers and thoughts.
Monday Jane 24th Posted Jan 24, 2011 11:26pm Today was a very rough day with my youngest Jake. He is having a hard time understanding why Ellie is the center of attention these days. Having his routine mixed up with his sensory integration has not been helping either. He woke up crying, spent most of the day crying, and cried himself to sleep tonight. Today was Ellie's first day of Physical Therapy. The Therapist was impressed by how strong Ellie was considering what she has been through. We just got through her leg muscles today. She has weak hips and some of her bones on her right side are weaker. Since the surgery she has some sensory problems. Good thing we are familiar with this and have been dealing with this with our youngest son Jake since he was a baby. With therapy hopefully it will get easier for her and I both. She cannot stand to have bare feet which can be challenging when she does taekwondo and swimming as activities. For the time being we are focusing on strengthening her hips and some foot muscles. But for the most part we are so happy and proud of how well she is doing. We also had a Newspaper interview today, for the local Lemont Reporter for the big benefit on Feb 11th at "This Must Be The Place".
Tomorrow is another day and I’m just hoping my son wakes up in a better mood. Ellie has Occupational Therapy tomorrow. Once again thank you for all the thoughts and prayers it is so much easier to handle this situation with all the support behind us. I am so thankful for my baby girl, Ellie. She has already beaten so many odds and we plan on making the record books for the most amazing recovery.
Wednesday, Jan 26th Posted Jan 26, 2011 2:12pm What a great day yesterday was. Ellie did Occupational Therapy yesterday, I worked out, and we had a photo shoot with the Local Newspaper. It was a busy day but it felt like a day of accomplishment. Ellie doesn't have any therapy scheduled till next week now. But we have homework to do with her. Ellie's personality is finally coming back. She is laughing and smiling and finally getting back to normal.
Everyday I thank god for helping me cross paths with Terri O'Neil. She has been such an angel. She is the one that has set up the benefit on Feb 11th for Ellie at "This Must Be The Place" in Lemont. It should be a great time. Dave and I will both be there to see the love and support of friends, family, and the community. They will have one or two bands playing that night. They also have donated their time. It is a suggested $5.00 donation at the door. The Owners of the Bar/Eatery are so very sweet and giving and I thank them for everything they are doing for our family. Please try to make it out. I keep getting word of some awesome Auction Items. Someone has donated their 5 bedroom house in galena, IL. Each room with a large flat screen TV. Someone else has donated their house that is 10 min from Disney (they are working on making it a complete package). I also have some people working on signed Black Hawks Memorabilia. A Devin Hester Autographed football. A Dooney and Burke Hand Bag, and I know there are many baskets that are being donated as well from friends, family, and businesses just to name a few items. If you know anyone or can get anything for the auction please contact me at Kyliew2@aol.com or Kelli at Ikicktwo@aol.com or Terri O'Neil at Hopesandfriendship@comcast.net.
Thank you for everyone’s Love and support
Thursday, Jan 27th Posted 18 hours ago Today was probably the roughest day yet at home. Ellie had repeated melt downs, about food, walking, therapy, etc. This is nothing new it just all hit me today. It has been very exhausting putting a fake smile to keep Ellie from seeing my tears and sadness. Today I just was too tired to handle it all. It all hit me today, this is just the beginning to a long journey. Tomorrow is another day, and I am just going to have to wake up on the right side of the bed because we have a long fight ahead of us.
Sorry for this being such a Debbie downer post but I just need to vent.