Some great news is that my friend Chris and her precious family put together a yard sale in Ivy's honor over the weekend and raised over 2000.00! All items were donated and Chris worked for weeks putting it together. On the sale day her parents, her in laws, her sister, her kids.... They were ALL there working ALL weekend!! We are so blessed by this sweet sweet family!
At the bank depositing the money from the sale!
I know many of you have emailed with questions about Boston and about the blog. I really didn't have all the answers at the time. Today I can finally do!
My blog is being fixed again. We did ask if it could be reverted back to the old blog but I think all the old templates and formats were deleted because she was not able to do so. Without getting in to details, the torch has been passed on to someone else, someone with a wonderful blog designing business, and she is planning on having it completed by the time we leave for Boston.
Boston... We arrive the 14th. Ivy will Have a sedated Echo and a full days worth of tests and pre op work ups on the 16th. We need to arrive at Boston Children's at 7:30am and we were told to plan on being there the entire day. On the 17th we will be back at the hospital bright and early for Ivy's heart catheterization. She will then be admitted. On the 18th she will rest and on the 19th her open heart surgery will happen. We do not have a time for that yet.
We have a hotel for the family during the time we are all there. A room never opened up at the Yawkey or House on Autumn or anything else we checked in to including the hotel across the street. The Ronald McDonald house affiliated with the hospital is for oncology only. So I will be Ivy's roomy from the 19th on. I have heard that there are no showers in the ICU rooms, you have to use communal ones..... NOTE TO SELF.... Bring rubber flip flops and take a deep breath! You can do this! It will be just like going to the gym! You can even jog to the floor the showers are on..... OK I CAN DO THIS!
I have heard you can see the beautiful trees and changing colors right from the hospital windows! I will look forward to seeing that every day with a bundle of Joy by my side!
Some of you have asked if you can send mail to the hospital. Yes, we would love to fill her room with cards just like last time! You can send here
Ivy Joy Sammons
Cardiology ICU
Boston Children's Hospital
300 Longwood Avenue
Boston, MA 02115
Once we have a room
I will update the address, but for now you can send there.
I would suggest you not post anything before the 17th.
These were taken at a recent trip to the zoo. Lexi is very offended by the smells the animals make! She would rather skip the animals and go right to the tree house and the merry go round!
Lexi telling the camel he had something gross hanging from his mouth..... Slobber!
But my brave girl wanted to ride the camel BY HERSELF!!!!!!!!
She was so proud and asked to ride him again and again!
Our new plan for Boston is to have Quincie and Lexi go home with the rest of the family on the 27th. Since we have had no luck finding a place with availability for them to stay, it just makes more sense to have them go home and get back to normal. This way, Lexi will be able to go back to school and dance, Quincie will be able to do her school work without a helper once Bryan is home, and the family will be together while we all wait on the healing of sweet Ivy.
May, June and July showed very little improvement for Ivy Joy. Her heart was still not working like it should have been and we were struggling with why our girl could not seem to get up the energy to play and move around and eat and be a normal toddler. The doctors finally discovered that her coronary artery had been crushed and she was in heart failure. She had actually been in heart failure from the day of her repair. Well she was in heart failure before repair too so I suppose her whole life. Makes me so sad. With loads and loads of medications for heart failure and blood pressure and blood thinning and pulmonary hypertension and to make it easier for the heart to squeeze, her Echo's still showed no improvement. In September I felt the need to seek a second opinion. We chose Boston Children's and a few weeks later we had a new pile of information on our daughters health and a whole lot to swallow. Between insurance happenings, scheduling this trip and getting life in order for this next part of the journey, October came out of no where!! And here we are! 6 days from go! We are blessed beyond measure! Ivy has been free of any colds or illness and we ask for all of you to please pray that she stays this way through our travels so that she can be as healthy as possible as we head towards surgery day. We also ask that the prayers begin for the miracles God will be doing with that right coronary artery. We really need it strong enough to reposition. Undamaged enough to allow a shunt. Please Lord let that be Your plan! And as for the rest, it's all so complicated and so difficult. But this month we have seen with our very own eyes that NOTHING is too big, too complicated, too difficult for Our God!!!! And so we set our eyes on Jesus with excitement for what tomorrow and the next day and the days after will bring. Certainly BIG things for Little Miss Ivy Joy!!
- I have found that hope so bright and clear,
Living in the realm of grace;
Oh, the Savior’s presence is so near,
I can see His smiling face. - I have found the joy no tongue can tell,
How its waves of glory roll;
It is like a great o’erflowing well,
Springing up within my soul. - love this hym!
Praying for your family as you embark on the next leg of this journey!! God is good!!!
ReplyDeleteOh Mary our whole family is praying for Ivy Joy and the rest of your crew!!!That sweet little girl has touched so many lives!!! I am on the same "I can do this" as you as far as staying in the hospital, though Janie's surgery is a few stitches compared to Ivy's! I know what to pray:) Hugs to your family!
ReplyDeletePraying in Athens,AL and believing GOD is still in the miracle business!!! ((BIG HUGS)))
ReplyDeleteHave you asked Boston Hospital to put you in touch with a social worker at the hospital to help you with housing? I'm sure you already have but they might be able to help you find a short-term apartment rental or something other than a hotel.
ReplyDeleteAnd I love the new blog. It's so much easier to read.
Thank you for this post. Team Ivy is on board and cheering for Sweet Jellybean and family. May God give you strength to endure all the difficult days ahead. I can't wait for the happy updates and to see sweet smiles after the procedures. Don't forget to pack the socks :)
ReplyDeleteMany prayers are being said for this amazing family.
Sending lots of love!
Luciana, Luis, and Mila
Praying for you all. You have the sweetest family.
ReplyDeletejanet
AS always PRAYING for ALL of Ivy's heart needs to be met ,been praying for all of you and the doctors at Boston,too! we will be with you on yet another part of Ivy's journey-God Bless you ALL! Cathy in Illinois!
ReplyDeleteNot only is your daughter amazing, but you too are an amazing lady...
ReplyDeletePraying for your family.
Jill
Love you sweet friend and praying for your precious miracle!!! XOXO
ReplyDeleteMary, I'll be following and praying.
ReplyDeleteWe were all set for Sallie's OHS this past Monday, but we got bumped. The hospital has us back on the schedule for a week from today, Oct. 17. While we are waiting for our Sallie's surgery to be done, I'll be praying for Ivy Joy's cath to go well and give you some good news.
On a lighter note, I wanted to say the communal showers are GROSS. I have to use them at Vandy too when we are in the PICU. We live too close to the hospital to qualify for any housing or sleep room at the hospital so it is the sleep chair in the PICU for me too (and a communal shower if I'm lucky). There is just one, so I get up very early (5:30 a.m.) to be the first one in and be back to the PICU before dr. rounds.
My friend's son just had OHS at Boston last month. He came home in March from China with complex, unrepaired CHD. He was very sick too. He is doing great!
Susie's blog is hiddeninasecretplace.blogspot.com
Thought if you wanted to ask her any questions, she could help you with the lay of the land up there. She is a super sweet Momma, who also has olders and youngers, and she is a sister in Christ as well.
Praying! Leslie
Hey sweet friend~ praying praying!!! LOVE the new look for your blog and ordered the cute tshirt~ will wear and pray for you all. I know God is going to continue to pour out His mercy and grace on sweet Ivy Joy!!! Love you!!!
ReplyDelete