Progress Report
Friday Sept 5
The days are just flying by now with just only 21 days until the benefit. We hope everyone has their invitations by now and all of the silent auction items are donated. We are overwhelmed at everyon's generosity and helpfulness and most importantly , prayers. Thanx again and we hope to see everyone at the benefit.
August 20, 2008
Well Summer's coming to a close and it's been very enjoyable for Meredith. Her walking and stairclimbing is much better. She's had a blast in her travels to her Uncle Tom's house in Michigan and other suprise treats including seing the Wiggles Live! She loved it.
We're are getting very close to the Benefit. Please save the date Sturday September 27, 2009 after 5:00PM mass at Our Lady of Hope. We are still looking for raffle ticket sellers and silent auction items. You can email me [email protected]. We're working hard to make this benefit over the top for Meredith, our little angel. More as we move through the next few weeks. Thanx for all who have helped so far and for the continued prayers for Meredith and her family.
Sat July 19, 2008
Sorry for such a long wait between updates, everyone is busily readying for the benefit. Meredith is her cute, usual self having a good time but as any toddler has plenty of black and blue marks and bruises. In a normal kidlet, it would be no big deal but with Meredith it is a big deal. She is on coumadin, a strong blood thinner so she won't have a stroke. Just taking extra precautions and watching her like a hawk helps.
She went to Door County with her Mom and Dad and Sisters and of course Grandma. She has it bad for horses and cows. As we drove, she would pull her nook out of her mouth look at me and say "I want to see cows!" or horses. We went to a small farm and although she wouldn't get within 10 feet of the horses or goats or sheep or pigs she seemed to have a grand time. Then of course there were no cows at the farm so every other request had to do with cows. We went to a nearby dairy but the cows were inside and she couldn't get a real close look.
We are looking for donors of cash and items to sell at the auction as well as any other help we can receive. Plan to be with us at the Benefit on Sept 27. There is a flyer attached to this website giving you the particulars. Everything is appreciated and prayers are the most welcome.
We appreciate all of the support we have recieved on Meredith's behalf. She is a wonderful, bright eyed beauty with a very joyful heart. We are all lucky to have her.
More regular updates will occur, sorry for being delinquent
Love and thanx to everyone, keep the prayers coming,
Paula
and The Meredith's Joyful Heart Benefit Commitee
Friday March 21
Good news, everything seems to becoming together. Her rash is subsided, her chest tube looks better. She saw the cardiologist and he doesn't need to see her for a month (except for blood tests) Her energy level is much better and she is anxious to eat a chocolate bunny for Easter. Our next mission is to organize a benefit for her. After her max is reached on her insurance and as she grows we just don't know what will happen. I will set up another website to let you know the particulars. Happy Easter
Monday March 17
Meredith saw the cardiologist today. He had to examine her in the stroller. Everything is status quo, back to see him on Friday. Each day she gets a little stronger but she doesn't really want to be touched and she hates her medicine, it is a real challenge. For now, more tears than smiles but we hope soon she will turn the corner. Continued prayers appreciated
Friday March 14
Saw the cardiologist Dr Husayni and after some discussion between the surgeon and the cardiologist, the cardiologist put her on yet another med, antibiotics for a possible chest tube abscess. She has to go back Monday to see him. He's usually cautious but have to think something 's going on, Matt and Patty feel like that's why it hurts so much when she coughs. More Monday unless something new develops Keep her in your prayers.
Thurs March 13
Going to the cardiologist tomorrow. No change from yesterday
Wed March 12
A bit better today, less rash, eating a bit more. Brought over dinner and she enjoyed the spaghetti and gnocchi with some salad. Still tires very easily and still a bit fearful but then who can rally blame her?
Tuesday March 11
No new ideas, she may be allergic to something, picked up something at the hospital while she was in, no one seems to know. Doing a bit better. Off to the cardiologist at Christ on Friday (if nothing happens in between) Thanx for the continued prayers
Monday March 10
Patty talked to her regular cardiologist at Christ He wants John Boblick to see her tomorrow and see him (Dr Husayni) on Friday. Going to the Dr and the hospital are so traumatic for her it'd hard on everyone who has to watch. Keep praying that this will end soon. More tomorrow. Thanx for all of your love and support
Sunday March 9
She is quietly watching her tv shows on Matt and Patty's bed. She is sooo itchy and nothing seems to help. The girls are taking good care of her, bowing to her every command. Still waiting for some answers
Saturday March 8
Back to CHrist today. Still with high fever and rash which is very itchy and uncomfortable. They wisked her right away from (hopefully) most of the germs in CHrist's ED. The doc did an echo and full exam and thinks she has an ear infection. He gave her some IM antibiotics and gave Patty instructions.
Friday March 7
She is slightly better but still has the rash and continues to spike high fevers. Not much fun being 2 these days. Matt and Patty are in contact with the docs but so far no progress. Keep those prayers coming.
Thursday March 6
The wait continues. She has been cultures examined prodded poked I actually think she is sufering from post traumatic stress disorder. Home again today. Where she loves to be but she is eating and drinking little, still has the rash and is off of the coumadin for now
Weds March 5
The wait continues, rash is slightly better, and her temp is not normal but getting ther. They have stopped one of the diuretics but she is still very thirsty and the doctors really are guessing. This time she is able to walk around so she ventures out in the halls a bit, she's getting braver now she just has to get better
Tuesday Mar 4
What a difference a day makes. She had to be readmitted today for rash, elevated INR and electrolyte imbalance. Please pray for her that is its nothing serious. SHe's at Hope, we don't know for how long
Monday March 3
Still waiting to be seen by peds all prayers welcome. More tomorrow.
Sun Mar 2
Still with a rash which is now worse. Matt sent pics to the Peds at Christ. To see Peds on Monday.
Sat March 1
Still doing well. Now she has a very itchy rash. Called peds and wwaiting for him to get back to us.
Friday Feb 29
Slowly improving resting a lot. She is still weak and looks like a starvation victim. I'm going to publish the Hope Heart starvation diet. It will be a big seller. Imagine losing 25% of your body weight in less than 10 days!
Thurs Feb 28
Loving being home, as weak as a kitten, eating more and wanting to drink more but she's on a fluid restriction and three diuretics so she' s pretty much all dried up. Feeling more herself though and her spirit is very good. We are grateful for everyone's help and prayers.
Weds Feb 27
Today we're playing the game, will she go home, won't she go home. She spiked a fever of 102 last night so everything got cultured then she never had it again. Everyone went back and forth and finally Weds late afternoon,she was released and when she got home WOW, there's the girl we were waiting to see. She is extremely weak, can not walk without assist but she played with her doll house, read some books, got reconnected with her sisters who missed her desperately. Those of you that offered meals, now's the time. Patty will have to take her back Friday and several times next week. We're blessed, still quite a ways to go but this miracle came true because of all of your thoughts and prayers, we appreciate it. I'll update as things arise. Love to All, Paula
Tuesday Feb 26
Doing well, still one more day with the chest tubes. She is still very fearful and refuses to look at her chest or her tubes. Can't but help but wonder if that she'll have issues later with body image. Eating and drinking__ do people actually eat and dring? According to Meredith, tha would be a no. She's happy when we are there, so that is some comfort. The docs are pleased with her progress, we just want out so she can get back to being her usual sweet self. Can't thank everyone enough for all of your prayers
Monday Feb 25
More playful today. Still with the chest tubes (one more Day) She's lost 6 lbs in the past week so now we stand on our heads to make her eat. She definitely has a mind of her own, definitely hates anyone who comes into her room except for family. Her toes and fingers are soooo warm now, her heart rate is normal as are the rest of her vitals She has remained temperature free Had a chest xray which showed a bit less pleural effusion, she has to have none in order to have the chest tubes out. Prayers are well. Love to All
Paula
Sunday Feb 24
As usual it's hurry up and wait on the weekends. Her central line was clotted so I suggested a small amount of delotting medicine, duh, after asking three times they finally used it snd guess what it worked! So now at least she doesn't heve to be stuck for her blood work. Still with the chest tthese really upset her, she wants so one touching them and she can't stand to see them so she keeps them covered up with her blankies. She sat in Matt's arms for the first time for a long time and I think she really enjoyed being held by her Daddy. Her apetite (despite of ordering two of everything she has possibly ever liked, even remotely) comtinues to be low - mod at best. Matt invented the potato chip game, she gets one small potato chip and then in order to get another one she has to drink something, pretty effective for a while. Pray she gets those damn tubes out, that will be a major step. Love to All
Paula
Sat Feb 23
Not much hsppening today, weekends in the hospital, not too much happens. We are waiting for a chest xray to hopefully get the chest tubes out. She's a little more active and playful, blowing bubles and coloring but she refuses to look at her tubes making everyone cover them so she can't see them. Hopefully a good word will come tomorrow.
Friday Feb 22
Meredith was moved to a regular room late tonight. She has become very anxious and distrustful of everyone except Matt, Patty and me. SHe went for a short wagon ride, one floor down and she screamed the whole way. She still has her chest tubes in and her main IV line is clotted so now they have to stick her for everything. She's eating bits and pieces here and there, we have nearly bought out the whole cafeteria to get her to eat. We've ruined hr tasta for everything sweet becaause we were trying to disguise this nasty medicine, so now orange sherbert, pudding and applesauce, yogurt too, have become something she won't except. No one medical can come near her, she screams bloody murder then they go away and we get our marching orders, close the door, pull the curtain, turn off the lights, sit down and hold my hand. Hopefully the're will be better news tomorrow. Pray she gets her chest tubes out, that will really mark her progress. Thanx for all of your love and support. Paula
Thursday, February 21st
More awake today, but now after 2 days of begging for fluid she eats very little and drinks even less. She still has fluid on the left side of her heart, and her constant infusion of fentanyl has been stopped. Perhaps the most devastating news is that she may require several “shunt” revisions over the next few years. I am grateful we’ve come so far but the journey ahead seems a long, long way to go. All my Love for all of your prayers. Keep them coming. Love, Paula.
Wednesday, February 20th
Meredith is much more awake. Watching Elmo and Barney on tv.
Eating solid foods. Still on fluid restriction. Still very thirsty.
She may get out of Intensive Care on Friday.
Please continue to pray!
Tuesday, February 19th
Meredith is doing well. She is crabby!
She is desert-bone dry because she is on fluid restriction.
She is more aware, watching more tv. And the doctors are pleased with her progress!
Monday, February 18th
The surgery went well!
Meredith is breathing on her own, and she is in stable condition!
Keep praying! Thank you......
