Just another roller coaster kind of day. We started our day off at New Lenox Lurie Children’s outpatient with OT therapy testing. I am so incredibly grateful that we have an outpatient facility so close to home. It was nice to be able to go only 10 minutes from the house. We spent about 2 hours with the OT testing Ellie. It made me so sad to watch Ellie struggle with small things that never gave her a hard time before. But we are just going to keep up her therapy at home consistently and try our best. We are now onto taping her face to help with bring back feeling and function. Ellie is very self conscious about this. The Doctors are very hopeful that she will regain function. It just is going to take time. It was very nice being close to home but we had to go downtown to Lurie Children’s anyhow for Ophthalmology appointment. We went strait from the Outpatient Lurie Children’s downtown to the main hospital. Ellie saw three eye specialists and they also consulted with the Surgeon. The second specialist that saw Ellie two days ago started by saying that she met with several doctors/specialist and they feel that the best option is to glue Ellie's eye shut but this would be temporary until we get her into surgery to sew her eye shut. Then we informed her that Ellie will begin Chemotherapy in about three weeks. She then said when is the last time you ate or drank? She then said I am going to speak with the surgeon and try to get you in today. We need you to have surgery and have time to heal before chemotherapy starts. I feel like I got punched in the stomach. It was all moving so quickly my daughter was just here for an eye doctor appointment and we where leaving with her eye sewn shut. I thought to myself “What the the hell this is not fair. Isn’t she going through enough already” The Doctor then said let me check your eye and see where we stand. She placed the eye drops that show the damage that has been done to the eye. She was super excited and surprised by how much Ellie’s eye had improved in two days. She said wow you are doing a fantastic job to me. “Yes, I am” I said while giggling and patting myself on the back. She then dressed in scrubs to go see the surgeon and show him the photos. She then came back and said we have discussed it and we think as long as you keep taping it shut and working on it we will continue to just tape it. I have spent so much time trying to perfect taping the eye. Ellie is miserable with her eye taped shut but she is handling it much better then I would. We have another checkup next Wednesday with the surgeon and we need to show improvement by then also or surgery will be still on the table. So for now we tape Ellie’s eye shut while putting medicine in her eye daily. We also have an appointment scheduled for the following Wednesday with a cornea specialist. I didn’t know they had so many eye specialists out there. Ups and downs of the day have me exhausted. We got home at 3:45pm and The Meloni Family brought us dinner which really is greatly appreciated on a day like this where I am mentally and physically exhausted. I know that Wendy Pawlak said she is setting up a Food schedule for those that are interested starting Monday. I cannot tell you how nice it is not to think about dinner when I spend all day thinking of therapy, Doctor Appointments, and just getting Ellie healthy. I am happy we do not have any Doctors appointments tomorrow and have a day off. I am going to have to revert back to a paper calendar because the doctor’s appointments are piling up and its easier for me to see it written on a calendar. I already have my Neurologist appointment and an OT appointment for Ellie scheduled on my Birthday. Ellie was really apologetic and I told her are you kidding adults don’t like their birthday and the world doesn’t stop on there birthdays. Also I wouldn’t want to spend the day with anyone else. So to recap today ended up being a great day all and all. We had a good first day at home. I was thinking of the first time Ellie came home from her first brain surgeries in January, we had the largest snow storm and school was cancelled and now this time we have the coldest day ever and again school is cancelled. I think this might be a pattern So Ellie is really not loving having her eye taped shut. Today she said several times how she hates her life. She also told me tonight “when I was diagnosed with a brain tumor why didn’t you put me into foster care, because I am too much work for you” This broke my heart. I never want her to think she is a burden or to much work for me. Yes, it is a struggle with my MS but I have an amazing support team and I wouldn’t ever think twice about taking care of her. I love her so much. As a matter of fact, my Mom, Sister, & Sisters kids where here for a few hours today helping and playing with Ellie. I’m so grateful they all live within a mile or 2 of me. Tomorrow Ellie has OT Therapy in New Lenox out patient and then we head down to the eye doctor at Lurie Children’s Downtown. I am hoping they tell me they see improvement on Ellie’s eye but I am not hopeful as It looks really red still. We as a family are doing our best to setup fun things for Ellie to look forward to in the future and as she goes through these draining treatments. My mom and step-dad hired a painter to come paint Ellie’s room on Monday. Ellie is super excited about that. We also have a lunch date at Ellie’s favorite cook on the grill place, Chi-Tung in February during ½ day of school with her cousins. And then our Vacation in March that has been on the books for a while. Ellie’s treatment will have to be worked around this. We might have to start a little sooner still waiting to hear from the doctors what the plans are. We are waiting for more pathology and genetic testing to come back also. I am not sure how to thank every single one of you for all the love and support. I will keep on trying to do it on her but please forgive me if I miss anyone as its been a great overwhelming feeling of love and support. Terri O’Neal for the awesome food and Banana bread. It was nice to be able to just heat up dinner tonight, Thank You. Also thank you for setting up fundraisers to help our family. We did open a few more things today. Some things have been condensed so its hard to know what is from who but we truly appreciate it all. Before we left hospital yesterday Ellie got a really nice card from her Geography class and then when we got home there was an enormous basket of goodies for Ellie from Lemont High School. Ellie actually used a bath bomb tonight during her bath from the basket. Also Ellie’s English Class put together some hearts with kind words from the students, a blanket, a heart pillow, & some other goodies. We also opened our gift from my Aunt Sue and Uncle Bob it was awesome heart décor for Ellie’s Room. Ellie’s Vocal instructor gave Ellie several gifts including this little music box that Ellie keeps playing all day long. She loves it. Also her Theater group gave her a bin full of goodies. Thank you everyone I truly appreciate it and I am sorry if I am missing anyone. I also wanted to thank each and every person who donated to help us with our medical bills so far. I just don’t thing words can express how much it means to us. I also wanted to mention, Terri O’Neal with “Hope and Friendship” has two fundraisers she has setup for Ellie and our family to help with medical costs. The first is anyone can donate through Hope and Friendship a 501c3 you just need to put in the note section Ellie’s name or Team Compassion, or anything to link or identify it to Ellie’s cancer battle. She did mention that some companies do a matching donation. The second fundraiser is a Mini Photo Session with a professional photographer. She is charging $50 per a session and donating 100% back to our family. I am attaching the flyer below. My sister also setup a Go Fund Me Page to help with the medical costs that don't seem like they will be ending anytime soon.. Click here for the Go Fund Me Page Let’s start off with the most exciting news we have had all week. We are home and we don’t have to go back to Children’s Hospital Downtown till Thursday. We get a Lazy Wednesday. It was a long day at the hospital. Ellie had an Ophthalmology appointment to look at her eye. Ellie has an Ulcer in her eye and it has lost the protective shield so we now have to tape her eye shut all the time and hope that she regains feeling in her right side and is able to close her eye. She cannot blink adequately in order to create the protection she need for her eye. She has a week to get some function back into her face in order to not have surgery. We met with the surgeon and he is pretty adamant that she cannot go more than a week without causing permanent eye damage. The plan would be to sew a portion of her eye lids together. This could be permanent or temporary just depends if she can regain full function. Just another hurdle to jump. By the time we where done with the Ophthalmology it was almost noon and we had a special visitor from Kasey. Kasey is a great friend of the family but she was Ellie’s childhood babysitter and Ellie loves her to death. It was such a nice surprise. It took sometime to get released. We found out that Ellie was on Brain Tumor Boards discussion list for today. I had to get ahold of Dr. Goldman to let him know that we have a vacation at the end of march that’s been planned for over 6 months and it was not flexible. Because we don’t know what treatment they are planning on proceeding with at this point but wanted to make sure he knew we would have to work around that week. Before we left I got discharge paperwork and the instructions where exhausting. We already have 3 more appointments scheduled for this week and need to make 3 more for the week. I did get a call from ENT and I was not happy with there scheduler. They have Ellie on steroids to try and bring the inflammation down. She is on full dosage for a week until the ENT signs off on starting to wean her. Unfortunately, the scheduler kept on giving me the run around that the next appointment is on the 11th. I kept explaining to her that we need to see the doctor next week because Ellie cannot start to go off steroids until we see them and that is way too long being on steroids. Needless to say I was able to leave a message with the ENT’s Nurse to try and over ride the scheduler. It is only day one dealing with scheduling and its exhausting. It’s amazing how much more work we are going to have to put in this time. I guess I was hopeful that it would be as easy as her very last brain surgery. Not that it was easy but this is probably the hardest recovery we have had thus far. Its amazing how you take such little things for granted until something major happens to you in your life. We where able to leave the hospital around 4pm and I was so happy to be busting out. We swung by Walgreens on way home grab some scripts for Ellie. Ellie was exhausted in the car. They dilated her eyes so the light was really bugging her, hence the Hollywood sunglasses. I am hoping to get in home services from the school starting on Monday but not sure how long it will take to get that setup seeing that the schools are closed tomorrow and Thursday. I have spoken with the school prior to the surgery and also the Hospital school liaison. I can’t imagine how much work we already have to make up. Everyone keeps reminding me that school doesn’t matter but its in the back of my head. Also Ellie is really missing being with her friends but on the same not she is very self conscious by her face not being fully functioning. As you can see she was super excited to get this UGG Robe from the Liz Tomala and family but insisted on covering half of her face. The poor thing has no idea what is ahead and how this is just the tip of the iceberg. I will say she has been handling all of this like a trooper for the most part. She is definitely handling it better then I would of at her age. She amazes me every day. She has had so much spunk in the hospital making all the nurses laugh. We keep on saying she has been hanging out with Grandpa Steve too much this week. We had a special visit at home from Ellie’s cousins. Ellie just loves her cousins so much and was so upset that they could not come visit her. Also the dogs where extremely happy that Ellie was home. Ellie spoils them and I’m pretty sure they lost 10lbs this week without all the treats she gives them. Ellie was just as if not more happy to see her dogs. Well I am going to bed and I am going to have the best night sleep. I think Mother Nature gave the kids the day off school so that I could sleep in tomorrow. Thank you to everyone for all the love, support, and gifts. Ellie did not have the energy to go through all the kind gifts them she just was able to open one and then she was pooped. I might have to add onto the house. Also thank you Tracy Schwartz setting it up and everyone that decorated our door with hearts and words of support. It was so nice to come home to a decorated door.
So I woke up surrounded by a group of Doctors at about 7am. The Neuro Surgeon on rounds said that hopefully we could get out of her within the next couple of days. I felt really defeated hoping that we could go home today. And then to hear next couple of days really put me down in the dumps. I was not looking forward to Ellie waking up and me having to deliver the bad news. Ellie woke up we got her in the shower and fresh for the day. I told her it might be a couple more days and she was extremely disappointed. Then we were off to the Audiologist downstairs to do a more in depth testing on Ellie’s Ear. The Audiologist informed us that Ellie’s hearing has gotten so bad that she would need to transmit hearing from one ear to the other. Which meant that she would need two hearing aids. I really felt defeated at this point, I held back the tears and tried to stay strong for Ellie as she hates her hearing aide now and doesn’t wear it because her hearing loss was so mild but with this progression she will have no choice but to wear it. We got back upstairs and a special illustrator artist was waiting to draw for Ellie along with my Mom and Sister our guests of the day. Ellie really enjoyed the illustrator he made a drawing of our dog bonnie. He also talked to her about how to draw. Dr. Dipatri, Ellie’s actual Neuro Surgeon, came in to talk to us and informed us that we are aiming for Ellie to go home tomorrow. I felt so relieved and excited. He also told us to not let the Audiology report get to us yet its premature. He said she is still healing and we really don’t know what is going to happen. They put her on a different kind of steroid and then we are going to re evaluate in a week. We then had OT Therapist come in and work with Ellie, and then Abby the Speech therapist, followed by Willow the Art Therapist. It was a busy day to say the least. My Mom and sister had to leave around 1:45pm. But not before Ellie could sing for them and some nurses. For being one week out of surgery and still not having feeling in one half of her face Ellie Ellie sounded great. Ellie was then really pooped from the day of therapies and tests but the PT therapist came to evaluate Ellie. Ellie was a rock star and at this time we can skip Physical Therapy until we take care of everything else. It was about time we had a win. It was finally time to relax and just take a nap. But before we could rest the evening Neuro Surgery Team came around to do there rounds. Dr. Bowman took one look into her eye and said that we need to get Optometry up here to look at Ellie’s eye. Ellie’s eye is extremely read and luckily it doesn’t hurt because her whole right side of her face is numb. Optometry then came in to check Ellie’s Eye. Ellie has something called Exposure Keratopathy. Basically Decrease Lubrication due to inadequate eye blinking. Because Ellie cannot close her eye its causing some issues. The Optometry doctor told me that usually patients with these issues have to be transferred to ICU so that they can monitor and place drops in the eyes every hour. I was really upset because seriously we have to pack up everything and leave our pent house suite and head to ICU just for eye drops and lubrication every hour. So I told her to talk to Ellie’s Nurse, and Ellie’s nurse said we could stay and they would take care of it with Ellie. These nurses at this hospital on 19th floor are absolutely amazing. I just adore each nurse we have had since we have been here. I am actually going to miss all of them. Even when they are not assigned to Ellie they come in to visit and see her. We are so fortunate to live in a big city with a great hospital with awesome staff. Back to Ellie's eye issues, for now they are putting eye drops in every hour, then lubricating gel every hour, Lubrication antibiotic 4 times a day because she is susceptible to an infection. And then taping eye over night and only waking her up once in the middle of the night to apply. The best part is I get to go home and continue this as long as her eye wont shut. Do you hear the sarcasm in my voice? If her eye never shuts, then we will have to proceed with eye surgery. I’m exhausted and praying every day that Ellie heals because this just isn’t fair that this is just the healing process and then we have a serious Chemo battle ahead of us. Ellie actually sang for a bunch of the nurses today and she sounded good. I know that she doesn’t sound 100% yet and has some work to do but she still sounded great for someone that just had brain surgery 7 days ago. I am so proud of her. So for now we need prayers that Ellie heals and can shut her eye, and regain complete function of her face sooner then later. Also please pray to give me the strength to be her caregiver as we have a long road ahead of us. One more prayer that my MS holds out. The blog hit 14,000 hits this past week. Thanks for following Ellie’s journey. By the way I had video of Ellie singing but I promised her I wouldn't post it right now. She is very critical of herself and doesn't like the sound on the recording from my phone. Ellie had a very special visitor today. Her brother! We took a walk down to the child life center and played some games and then to the family room and played some cards. Its been kind of a quiet lazy day. Ellie’s eye has been really bugging her tonight. We will be seeing an ophthalmologist tomorrow and they will be doing another more in depth test on her ear tomorrow. They where weaning her off steroids but because of the loss of hearing they are thinking that there is some swelling somewhere so they have upped her steroids again. Ellie has a new ointment for her eye. I hope I can keep up with all these meds when we get home. Which we are hoping for tomorrow but will not be surprised if we are here till Tuesday. If tomorrow is the day this might be the last night I get to see this High Rise view but still looking forward to the Lemont view. Ellie did get to facetime with all her cousins today including Lucas from California. He facetimed from the beach. Ellie was so surprised because its so cold here how can it be warm enough there to go to the beach. Ellie also facetimed with another group of friends. She really enjoyed staying in touch. She feels like she is missing out on so much at school. I was able to convince her to sing to the two nurses during shift change and they where blown away. They said they cannot imagine how good she sings once she heals. So happy she sang for them. Tomorrow is going to be a work hard kind of day and I am sure I will have a little more exciting updates for you. So yesterday Ellie ate so good, she had a Chocolate croissant, Dunkin Donuts Chocolate long john two of her favorite, then mac and cheese, bread sticks, a little salad for lunch and actually drank enough to be taken off her IV. Ellie had a shower and I had to document Dave actually drying her hair. He had to take over for me so I could go talk with the nurse. Ellie’s vision is still a concern but she is trucking through it. She is just closing one eye and watching TV through the other eye. We also need to tape her eye shut at night because it wont shut on its own and is becoming very irritated. She is now on Eye Drops to help her one eye. Grandpa Steve and Mary Kay came to visit and lifted all of our spirits. We sat in the family room for sometime and enjoyed the comical styles of Grandpa Steve. Dad had Ellie cracking up, shocker, unfortunately didn’t get it on video. I did get her refusing therapy I was hoping I would have gotten her to sing for us. She sang earlier for me and sounded great. We do know that Ellie’s eye rolling is in full affect. She has no problem at rolling her eyes at my Dad, Doctor Goldman, & Me. It was so excited to see Ellie up and for so much time. I told my dad he should be a comic that goes room to room in children’s hospital to cheer families up. Mary Kay said yes he should dress up like a clown. Me “You would need new material every week.” He said “no, there will be new families every week” Then I explained to him that some families are there for much longer. So being my dad he said its ok I will workout my material in the adult hospital with the alzheimer's patients they will forget it by the next time I came. Oh Dad, thank you for bringing joy to our days here in the hospital. During our visit in the family room Ellie informed us that she has lost all hearing in her right side. So that prompted a call into Neuro Surgery who came to see her. This prompted a MRV (a quick MRI to see if there where any changes to her tumor). Then they called in the ENT for more testing. They didn’t see anything in the room but are taking her for more testing today. I feel like we take two steps forward and then three steps back. My Mom and Step-Dad came and spent the night with Ellie so we could get home to get a good night sleep and so I can spend some time with Jake. We drove home in the mist of the snow storm exhausted and I couldn’t wait to hit my bed. I was greeted when I walked in the door with a super happy Jake and two super happy puppies. If only I was always greeted that way. By the way thank you Schwarz for taking Jake for a fun day yesterday he was so excited to tell me all about it. Unfortunately, I only able to spend a little time with Jake before I had to hit the hay. Dave stayed up and spent time watching their favorite show The Office. I slept so good last night but woke up exhausted, legs are week I think my body said its ok now its time to take care of you. Unfortunately, its not yet time we have a long road ahead of me and then I can poop out after this. Jake is really struggling with me not being home and not having his sister at home. He is actually coming to visit Ellie with us today, I hope Ellie’s condition doesn’t freak him out as its not what his sister normal looks or act like. Last night my Step-Dad brought a card that him and my Niece Kailyn worked really hard on for Ellie. Ellie did not hold back as she has not lost her critic personality. She had us laughing. She did really enjoy It she even had us hang it below the TV so when she watches TV she can see her puppies. Thank you Kailyn Ellie did truly love it. We are now on our way back to hospital a little later then we wanted to but we had things to take care of around the house and had to do laundry and pack. I figured if I show up at the hospital with everything we need for a week then they will let us go either today or tomorrow. It’s just the way things work. Thanks again everyone for all the love and support.
Up at 2:30am just imagining the challenging journey we have ahead of us and wishing, praying for a cure. Ellie today saw the OT specialist and Eating/drinking speech specialist. Ellie improved in her eating and drinking but not enough to be taken off the IV fluids. I’m pretty sure we are here till at least Monday. OT came in today and we are trying all different ways to help Ellie Drink so I was sitting next to her in the bed and my Mom jumps up to help fill one of the drinking cups with a cover with water and hands it to Ellie. Ellie has weakness on her left arm/hand and she couldn’t hold the cup (hence the cup with a lid so we can get away from sippy cups and work on closing her mouth around a straw) as her wrist gave out, it felt like slow motion as the cup dumped in my lap. It shouldn’t have been a big deal if the lid was on but my Mom was in such a hurry to help she forgot to put the lid on tight. So about 16 oz of ice cold water dumped right in my lap. It was very funny as I was drenched and we tried to make a Joke out of it because Ellie felt so bad. Poor Ellie just knows what she should be able to do and yet she just can’t. Ellie’s vision has changed also she has been seeing double, I am praying this is just swelling going down and a temporary problem. Ellie has a lack of awareness with her left side right now. My heart is breaking for Ellie as we struggle through this. We keep being reminded that even though this is very rough, Surgery was the right option. I met privately with the Neuro Team and that discussion is for a later post but the one thing that was reiterated to me is how happy they are that we did surgery and it was the right decision. Dr. Dipatri said that even in the scan it was showing that her her Ventricles where pushed over and her brain was starting to fill up with fluid. The second scan after surgery shows it pushed back over and the pressure was relieved. I really hate myself right now as I look at these kids who have had other surgeries on this floor and I am jealous. Why the Brain I ask all the time, its just not fair it’s a much harder battle then any other cancer. I hate myself for being jealous and mad because I know each family is going through their own personal battle and no kid should have cancer or have to be hospitalized for surgery. I find myself apologizing in my brain for even thinking this as I pass a kid in the hallway. Brain Cancer is such a complicated thing to go through, it controls everything and it pains me to see Ellie struggle. Doctors are thinking the facial weakness is temporary and therapy will get it moving from what they see from the scans but its going to take some therapy and wont happen over night. The only nice thing is that Ellie is now a teenager and understands what its going to take and so she is constantly doing her exercises to bring back her feeling. During her first surgeries I would have to push her to do therapy and she would cry. I’m living in a survival state at the moment and I know its only a matter of time before my MS gives out. Dave is spending the night tonight to help out. So on the bright side (but jokingly not so bright) the nurse came in for Ellie to swallow 6 pills at 11pm (which is a challenge in its self because she can’t feel if she is swallowing them) and we discussed trying to let Ellie sleep as much as possible tonight and hold off on some pain meds so we don’t have to wake her as much tonight. Now the not so bright side - Dave is here and I wanted to show him how we get woken up about every hour and how rough my nights have been. I wanted him to get the FULL experience. So I was talking to the nurse and she was explaining how we where going to try to let Ellie sleep and just come in for vitals and I looked at her and very seriously tell her “ok sounds good but can you come in and wake my husband up every hour for me? “this young nurse looked at me in shock and was like “ummm” I had to quickly tell her I was joking. We had a good laugh, she thought I was serious and how it was a strange request. I guess at least we can laugh through this as much as possible. I will tell you Ellie is super proud that she is so loved when anyone walks in the room they express how much they love the cards and are shocked by how many cards there are. My sister, Ellie’s Aunt spent the night hanging cards up for us. I told her when we are discharged she needs to come take them all down to bring home. Just now one of Ellie’s machines was beeping and the nurse came in as I am writing this and she started to look around and said “I love this, this is amazing, wow” I know I sound like a broken record but Thank you, Thank You, Thank you... I actually am laying in my chair right now looking around at the cards and reading the ones I can from here. They have brought us such joy and some are really really really original, from a rabbit with a pancake on its head to a Pig unicorn, to Hitler Jokes. So amazing. Todays cards that where hung where from the River Valley School. I was so impressed how the kids really took their time and wrote uplifting notes to Ellie. Today Ellie had a shower and I dried her hair and she seemed to handle the VERY CAREFUL hair brushing good. When she was younger she would cry in pain although that could be the fact that its numb on that side of the head but time will tell. Today Ellie had a visit from Grandma, Papa, Aunt Kelli, & Grandpa Steve. I think this is the hardest thing for Ellie is the fact that her visitors are so limited. We have been trying to make up with that with as much facetime as we can. The phone calls really pep her up so much, right after her phone calls she is so drained and has to sleep but you would never know that by how excited and vocal she is on the phone calls. I give props to my Dad, Grandpa Steve as he has been our entertainment every day. From the moment he comes in to the moment he leaves he has us in stiches. Ellie’s eye roll is in full affect the entire time. Oh the parking stories and how he gets lost has all the nurses laughing and the party room for sure. Her OT therapist today said this had to be one of the most entertaining therapies she has ever done. That’s my Dad for you. Till tomorrow or wait I mean later today. Because it’s the weekend I probably wont have much of an update as all the therapists are not here on the weekend and they are on a limited staff. But my Dad is coming to visit today so I am sure we will get the Parking Chronicles Comedy again. Grandma and Papa are having a Pajama Party with Ellie tomorrow night so I can go home and try and get one good night sleep, so I am sure we will have stories about that. It is now 4am and DD is going to be calling my name pretty soon. You know how the commercial goes “I live on Dunkin” That is so true while I have been in the hospital. But we have decided Ellie is going to live on Starbucks Frapachinos while we are here. My sister went out in the freezing cold to get her one and as doctors did there salivating at Ellie’s drink. Ellie did Eat a whole 6-inch subway Sub tonight and drank Starbucks she is determined to get out of her and get home. BTW update on Dave spending the night, no worries Dave’s sleep has not been interrupted as he has slept through every time the machine beeps or/and someone comes in. lol Till tomorrow.
It’s Friday, day 3 post operation. Every day we see small improvements and that really excites me. Last night was not too bad. I didn’t sleep much because of how uncomfortable the chair is but luckily the Prentice Hospital which is attached to the lobby here has DD. Last night we had a visit from the Resident on call, he was telling us how he really admires Dr. Dipatri and that Dr. Dipatri washed Ellie’s Hair with shampoo after surgery. He also said that he put Ellie’s Hair in a pony tail. To me its impressive when any guy can do hair and especially a brain surgeon. This morning we already had a visit from Neuro Surgery team and they took Ellie’s bandage off. Dr. Dipatri did an amazing job with Ellie’s scar. He actually made her original scar smaller it looks like. Ellie also had a facetime session with two of her cousins. She was smiling so much and this really started her day off with good spirits. Ellie is actually interested in watching TV this morning, which is huge. She has been laughing at the TV all morning as she watches Victorious. Spirits are high. She even ate a whole chocolate long john this morning. Lots of big plans today to eat more, drink more, do more walking, and mouth exercises. We will be working with the eating and drinking speech specialist, PT, & OT today. When Doctor Dipatri came in this morning he said one thing we know for sure you have the most cards then anyone on the floor. Ellie is truly loved thank you to Lemont, Friends, & Family for making her feel loved. We are also going to take a shower and wash her hair, start getting her back to feeling normal again. This is truly a happy Friday because I feel like its all uphill from here.
Today was a good day but also a difficult day. You may ask how can it be a good day and a difficult day all at once. Ellie has shown more energy today, she has not had a nausea episode since midnight last night, she woke up and had a half of a cracker at 4am, a bite of a banana at 8am, a couple of small bites of a chocolate croissant and a small bite of a banana for lunch, and about three spaghetti noodles for dinner. And she kept everything down, these are amazing steps forward. We had a very special visitor from Abby her speech therapist from the first go around of surgeries, she was working today so she was able to see us and that was exciting. She was so sweet to stop by and visit and she brought me coffee, that makes her double sweet. Through the past 7 ½ years we have met so many nurses, doctors, nurse practitioners, social workers, Child life specialist and the list goes on. All of them become our family and it becomes very sad when they move onto a new job. But its so nice when there are a few of them that have stuck around the entire process.
Ellie was really pooped this morning and I told her that Grandpa Steve, Aunt Kelli, and Grandma where going to visit and she said “Oh, I better get some rest for there visit.” She was excited and couldn’t wait for the visit. Our dear family friend Janae, stopped by after her shift at a different hospital and was unable to see us because of the visitor policies but she dropped a special gift off for Ellie. Ellie also got a very special gift from one of her best friends Daleigh (they have known each other since preschool and became really close starting in 1st Grade once Ellie was diagnosed). Daleigh got a bunch of Ellie’s friends together and created a quilt for her. Each friend created a different square with photos and drawing. Ellie just kept on saying how amazing this was. She has been so blessed by so many thoughtful people. Besides the visits and special gifts. Ellie facetimed with her Great Grandma George, Papa, her cousin Kolton, her cousin Maddie, and with a group of her girlfriends who really lifted her spirits. Ellie said at the end of the night to me “why is it so exhausting to facetime.” How do you answer that? Ellie also walked for a bit and did some facial therapy. She is determined to gain strength in her face and working hard for it. She did vocal warmups to help with strength and even sang. This is just day one I’m pretty confident that its just going to get better and better as time goes. Doctors are pretty sure she will regain function of her face with therapy but its going to take weeks and hard work. It’s driving Ellie crazy, she is drinking from a sippy cup and drooling when she talks. She also has lost coordination and strength in her left side of her body. She can’t hold something with her left side. This is why I say it’s a difficult day. Reality of what the next weeks are going to bring are sinking in. It also has come to light that Ellie isn’t getting out of here in the estimate time frame they gave us. She is really moving slow as far as recovery allot of that has to do with the fact that she lost a day to nausea. This is much more of a struggle as Ellie knows what she should be capable and is not. We just keep on trucking forward and I am physically and mentally exhausted. Ellie doesn’t want me to leave her side except she has let me go for lunch each day as there has been family visiting with her to give me a break. But we had a discussion of maybe her Dad (Dave) spending the night on Saturday so I can go home and sleep for one night and she said well you really need to stay here with Dad because he doesn’t know how to take care of me and all the stuff I need to do. Needless to say, that plan is a bust. She is putting on a brave face for others, but is struggling as this is no cake walk. We are going to try and get a nap in before our next visit from the nurses. We are onto every two hour check and then they come in for medications so hopefully we can get a little more sleep tonight. I added a photo of Ellie the first go around with her speech therapist and then again from today. Also one of her dad from the first go around and then yesterday. Ellie’s second half of day was filled with allot of rest, nausea, and a fun visitor named Larry. We finally got Ellie up to use the bathroom. Although her left side is much weaker and she needed two people to hold her up she did fantastic. The Nurses called this Day 1 even though Ellie’s surgery was yesterday they count that as day 0. I think Ellie got maybe a quarter of a cracker eaten today, she has to eat on her left side of her mouth only as she still cannot feel her right side. Doctors are hopeful this is temporary but they said there is a chance it isn’t. Although Ellie was able to get that piece of cracker down, unfortunately it came right back up. Ellie never had this Nausea before with any of her other surgeries so it’s a new experience. We were able to get her in the chair for a few minutes today. Every little step is progress. Ellie made some comments that really broke my heart, she said she hated her life and she was miserable. Poor thing just can’t keep anything down. Then Ellie had a special visit from her Aunt Kelli & Uncle Keith who brought a huge bags of inspirational cards from the Lemont Community. They gave my mom and a I a break so we could go get lunch and just get away for 45 minutes. They where assigned the task to keep Ellie awake as she has done nothing but sleep. They read cards for the full 45 minutes and didn’t even get through 25% of them. These cards where so uplifting and Ellie just loved all the cards, gifts, and we cannot tell you how much I appreciate the generosity of Gift Cards. I wish I could thank each individual person for the joy they have brought us but It would take me days and days. The nurses where all very impressed by our small town of love and support. Lemont is one of a kind to say the least. One of my favorite cards that just made me smile from ear to ear is a kid drew a bunny with a pancake on its head. I just can’t stop smiling thinking of a pancake on a head of a bunny and how did he come up with that? But it was brilliant. I was able to hang a very small amount of the cards and am looking for more places to hang more. (That’s a task for tomorrow). Aunt Kelli, Uncle Keith, and Grandma (my Mom) where just about to leave for the day when there was a knock on the door. I saw Ellie get a spark in her eye I have not seen in a long time. I looked around the door to see and it was a Volunteer with a therapy dog named Larry. This couldn’t have come at a better time. I wish I got the initial expression of excitement Ellie had on her face. It made me want to go out and get her another dog. (Dave don’t worry I thought this for only a moment, we have two amazing puppies at home and that is plenty for us). Larry laid with Ellie up on the bed and even Larry didn’t want to go when it was time to leave. Larry really liked Ellie, and the feeling was mutual. Larry left and within an hour Ellie’s arm swelled up at the IV Site. Something had knocked the IV luckily we caught it early and they where able to pull it out and work on getting the swelling to go down. But with this it meant another poke for Ellie. We asked Ellie (Who can’t stand pokes) if it seeing Larry and cuddling worth getting poked again and she said YES without hesitation. I would have to agree with her it was a very special moment in our hospital stay and we really don’t know what knocked Ellie's IV out I think it might have been when she was up and went to the bathroom. But it didn’t matter as she was happy. One of Ellie’s friends from High School Abby, was down here for a doctor’s appointment and stopped by to bring Ellie a little something. I was heading out to see them in the lobby when the IV team came in and Ellie didn’t want me to leave them so sadly I wasn’t able to see them but they left a very nice bag of goodies for Ellie. Ellie facetimed her friend later and it was difficult as when she talks she drools out of her right side so I kept on wiping her mouth and then she had to hang-up abruptly because she got really Nauseas. Poor girl can’t even get through a phone call. I can’t get over the generosity and love that is being shared with us daily. Mrs. Duffy her 2nd Grade teacher gave us a bag of stuff including this amazing angel that is sitting on the shelf watching over her. Another one of Ellie’s old teachers from junior High Mrs. Neves, gave her a card with two brand new sharpies because in Junior High Ellie would carry a full set of sharpies around with her and they both shared the love for sharpies. The thoughtfulness is so amazing by so many. Like I said I would love to thank each individual person but I don’t know where to begin. We saw the Neuro team tonight and they showed me the scan and it looks amazing Dr. Dipatri did an amazing job. The one nurse here just raved about Dr. Dipatri and how impressed she is with him and how she looks up to him. She told us that he knows all the nurses by first name and truly cares. He invited her to observe a surgery once and what stuck with her the most was not just the time and caring he spent during surgery but after it was all done he took his time brushing the girl’s hair and putting it in a pony tail. She said here are all these nurses and assistants around him that could do this and he did it himself. This story was such a great story and it just shows how these doctors are some of the most amazing doctors. After the visit from her team Ellie had her absolute favorite visit of the day, her Daddy. Ellie and Dave have such a connection and she was so happy to see him tonight. They cuddled and took a nap just like 7 years ago after Ellie’s first surgery. Every time I see the connection that Dave has with my kids I fall in love with him all over again. All the nurse’s hearts melted when they saw Ellie’s connection with Dave also. Even though Dave could only stay for a little over an hour (He had to get home to get Jake ready and in bed for school tomorrow) and it took him longer in the drive here and home. It was so worth every minute of his visit. We had a great day with many great visitors and now things are calm and its just me and my girl. She has been mostly sleeping and I was able to take a small nap. They are moving to every 2 hour assessments, and then they come in for pain meds, steroids, & Zofran. So allot less frequent visits then last night so I’m hoping for a little more sleep tonight. My mom will be here in the morning to give me a break and then I can maybe get a nap in. Thanks again for the love and support, I know I sound like a broken record but I don’t know what else I can offer but my gratitude and I feel like I should be offering so much more as you have given us so much love.
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