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Monday, September 23, 2013
The busy-ness of Life......
Okay...I've said it before and not ashamed to admit it once again-----
I honestly don't know how some folks manage to take care of the house, manage their children---even teach them, take care of themselves AND keep up with a blog! I know they must be extremely organized folks----definitely an area I am constantly working on. However, after 7 months----wow----I'm going to do a fast catch-up on the amazing highlights of these past months and the blessings God has given us! You have been WARNED....this is a loooooooooooooong overdue update!
I see I left all hanging after Shane's last trip to Boston. His heart cath went very well in February : ) They widened his pulmonary arteries a bit to normalize the blood flow in his lungs to 60/40 for the right and left which flipped it from a 40/60. Shane bounced back quickly. We flew to Boston on a Monday, cath Wednesday, home on Friday! Shane is finally off Lasix and only has his daily aspirin! His speech is very good now, too. I think we understand about 80 % of what he says. He started preschool a couple of weeks ago---the same one Olivia attended. Most of you know we homeschool, but this was a great choice for us on several levels. Shane needed to learn that mom will always come back! This has been the biggest hurdle for him so Olivia and I pack up her books(and stuff) to have kindergarten down the hall from his preschool class : ) His teachers are amazing : ). They have been so gracious and encouraging to both Shane and me. This also gives Olivia and I some uninterrupted one-on-one time!
So now for our events of the past 7 months...................
I'm just about the worst blogger!!
I am ALWAYS, ALWAYS playing catch-up!
I see I left all hanging after Shane's last trip to Boston. His heart cath went very well in February : ) They widened his pulmonary arteries a bit to normalize the blood flow in his lungs to 60/40 for the right and left which flipped it from a 40/60. Shane bounced back quickly. We flew to Boston on a Monday, cath Wednesday, home on Friday! Shane is finally off Lasix and only has his daily aspirin! His speech is very good now, too. I think we understand about 80 % of what he says. He started preschool a couple of weeks ago---the same one Olivia attended. Most of you know we homeschool, but this was a great choice for us on several levels. Shane needed to learn that mom will always come back! This has been the biggest hurdle for him so Olivia and I pack up her books(and stuff) to have kindergarten down the hall from his preschool class : ) His teachers are amazing : ). They have been so gracious and encouraging to both Shane and me. This also gives Olivia and I some uninterrupted one-on-one time!
So now for our events of the past 7 months...................
Happy Family Day--One year on March 19, 2013
A very special quilt for our boy made by a very
special friend! Thanks, Eva!
Two of our sweet grand pups visiting with us---Lolli and Poppy---while their parents take a much needed vacation before the arrival of our little granddaughter!
An Easter picture....cheesy smiles and all!
Someone....turned 4 : )
Lauren graduated from high school : )
Shane took swimming lessons.
Olivia finished preschool!
Someone got the chicken pox : (
We are GRANDPARENTS!!!!!!! We welcome our little Junebug, Elleanor : )
another post to come on this!!!
Isn't she a beauty!!!!!!!
Poppy and Lolli love you so much!
Our girl gave her hair away...again for the fourth time....
Some more of our precious ones after long distances and a providential meeting!
We celebrated Olivia's Family Day # 4...WOW...she asked for a Joy cake! : )
Josiah is off to Belmont as a Junior !!
From this to this in one year : )...oh and new glasses!
Celebrating ***33*** years with God's most gracious gift to me!!
"Surely you have granted him unending blessings
and made him glad with the joy of your presence."
Psalm 21:6
Wednesday, February 20, 2013
Back to Boston!
Originally Shane was scheduled for a routine heart Cath on February 1st but a cold caused us to reschedule. So we arrived in Boston Monday and had out PreOp yesterday at 7:30 am. e still has a lingering cough but we trust the team that said Shane was clear to have his Cath.
They will do a thorough check as this is the first Cath since Shane's repair, look at the functioning of connections and the valve they put in, check heart pressures in all chambers, dilate the pulmonary arteries and look at how this affects the VSD patch. Could take anywhere from 1- 4 hours depending. From here the doctors can better gauge Shane's future treatment . Of course they give you the good, bad and ugly about the procedure, as always. We know Who held Shane's heart as it was formed and He holds it still! Prayers appreciated... For me too as I'm trying to fight off a cold! Thank you!!
We arrived at 7 am this morning! Yay, we were first on the board. Shane got a dose of "happy juice" at 7:30 and was wheeled back at 8 am. Got one update and from the Lab that he is doing great! Another expected in an hour.
Here is a picture from Monday after a plane trip and 3 train rides! Shane crashed on the way back from Trader Joes!
"As for God, his way is perfect:
The Lord’s word is flawless;
he shields all who take refuge in him.
For who is God besides the Lord?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure."
Psalm 18:30-32
Posted with BlogsyFriday, December 7, 2012
The Season of Giving to help the least of these...
Okay...I need to update once again on family things...especially because we got some exciting news on Thanksgiving!!
However, I want to push this to the forefront. I mentioned in my last post about Kayla's and Lauren's(our daughters), deep desire to help build and raise funds for the Sangaalo Baby Cottage to provide resources for much needed medicines and everyday necessities. Damalie and her husband, a young couple with two small children, have taken on the task of welcoming orphaned and sick babies into their home living out the life Jesus called us all as Christians to live---"caring for the least of these". They have sold their belongings in order to accommodate and provide for as many children as the Lord places with them by building the Baby Cottage....and they trust He will meet every single need! If you have not already done so, please consider their ministry. Voices for the Voiceless has partnered with them and you can read Damalie's amazing story here.
Please read Kayla and Lauren's letter below and go on over to their blog!
Hello Family and Friends,
As you can see there are incentives!! Give BIG to bring hope to little "Kings and Queens" such as these : ) Thanks be to God!!!!
However, I want to push this to the forefront. I mentioned in my last post about Kayla's and Lauren's(our daughters), deep desire to help build and raise funds for the Sangaalo Baby Cottage to provide resources for much needed medicines and everyday necessities. Damalie and her husband, a young couple with two small children, have taken on the task of welcoming orphaned and sick babies into their home living out the life Jesus called us all as Christians to live---"caring for the least of these". They have sold their belongings in order to accommodate and provide for as many children as the Lord places with them by building the Baby Cottage....and they trust He will meet every single need! If you have not already done so, please consider their ministry. Voices for the Voiceless has partnered with them and you can read Damalie's amazing story here.
Please read Kayla and Lauren's letter below and go on over to their blog!
Hello Family and Friends,
Hope you are doing well! Lauren and I are wrapping up our fundraiser for Sangaalo Baby Cottage in Uganda, with only a couple days left of raffling. If haven't had a chance to enter the drawing, there is still time. We will be drawing a name for a Gift Basket tonight, and after the weekend, we will be drawing a name for the Kindle Fire 2 HD! We have raised about half of our goal of $1,000, which is awesome! For $10, you can get your name in drawing -- every $10 after that is another name in the hat to increase your chances :) If you still want to enter, or maybe just increase your chances for the big win, you can visit our site at:
You will see the latest photos of our Gift Basket giveaway! At the very bottom of the page there will also be a donate link where you can enter to win (you don't have to have Paypal, just a your debit or credit card). If you'd rather mail a check or cash, email us here or at borderlesshearts@gmail.com and we'll send you an address. All proceeds will go to either building the new Cottage for the babies, or providing food, clothing and medical care, as many of them arrive with malaria, HIV etc. A small portion will also go to another orphanage in Uganda to help their feeding program :)
We love you! We hope that you have a wonderful Holiday Season -- we have been so blessed this year by your prayers and support.
Love you,
Kayla and Lauren
As you can see there are incentives!! Give BIG to bring hope to little "Kings and Queens" such as these : ) Thanks be to God!!!!
Tuesday, October 9, 2012
Sangaalo Baby Cottage
As many of you know, two of our girls went to Africa this summer and came home with a God-given fervor to make a lasting difference there...not wanting to remain unchanged with life as usual. While in Uganda, Lauren and Kayla met an amazing woman, Damalie, who has chosen along with her husband(unusual there) to take in "the least of these"...all infants--more than a dozen!! They also have two biological children. God has miraculously provided them land to build a children's home---their desire. Kayla and Lauren want to help them with the funds to build it : )
Please consider following their blog and helping to fund this wonderful cause--Sangaalo Baby Cottage!
They have offered some very interesting incentives as well!
Here are a few pictures of the little ones in Damalie's care...
Our Father is all about rescuing His children!
"You, Lord, hear the desire of the afflicted;
you encourage them, and you listen to their cry,
18
defending the fatherless and the oppressed,
so that mere earthly mortals
will never again strike terror."
Ps 10:17-18
Monday, October 8, 2012
Olivia-ism
Olivia makes a picture and rolls it up to give to me.
Olivia: "Here, Mom. Sign this paper."
Mom: "Ok. "(I promptly put my signature on the paper)
Olivia: "No, Mom. Not like that. You're supposed to put an X."
Hmmmm.
Tuesday, October 2, 2012
Home Sweet Home
Sorry ...should've posted earlier! We made it home late Sunday and it was so wonderful!
Our yard was decorated with balloons and a sign welcoming us back...thanks so much "P" family!! Your help while we were away and your warm welcome is more than we will every be able to reciprocate!
Tom, Lauren and Olivia arrived in Boston on Friday night after 15 long hours in the car! We spent Saturday sleeping in and then walking around Boston. Saturday evening we took the T into Cambridge and met the Judges for dinner at Tupelo! The food was good...the company was great! It was fun catching up between pre-school meltdowns. A great treat for my birthday! Dinner and then Home!!
Tom, Lauren and Olivia arrived in Boston on Friday night after 15 long hours in the car! We spent Saturday sleeping in and then walking around Boston. Saturday evening we took the T into Cambridge and met the Judges for dinner at Tupelo! The food was good...the company was great! It was fun catching up between pre-school meltdowns. A great treat for my birthday! Dinner and then Home!!
Here are a few pictures from our final days in Boston.
Wednesday, September 26, 2012
Cleared to Go Home !!!
Our follow-up appointment was this afternoon. Chest X-ray, EKG, and pulse ox. Typical vitals and the all-important listen from Dr. Lang. He said Shane's lungs sound good--still a bit "juicy"--the diaphragm on his left side is still a bit elevated and somewhat stunned. Hopefully, over time that will correct; that causes some extra work on that side for breathing. No wheezing so we can back off on nebulizer treatments, no more steroids. Just continuing with the Lasix for fluid and baby aspirin. Shane still is not too energetic...that will come in time as swelling decreases and the effects of surgery wear off. I'll cut him some slack since he did have open heart surgery!
So Dr. Lang said, "What are you still doing here?"
Me: "Waiting on the ok to leave."
Dr. Lang: " Get the &$@# out of here! See you in 6-12 months."
As we were leaving the office, I told Shane that the doctor said we can go back home now. After a minute or two, he got a big grin on his face and did his happy dance. "...cited!" he said! so sweet...
sorry about the shadows!
So Dr. Lang said, "What are you still doing here?"
Me: "Waiting on the ok to leave."
Dr. Lang: " Get the &$@# out of here! See you in 6-12 months."
As we were leaving the office, I told Shane that the doctor said we can go back home now. After a minute or two, he got a big grin on his face and did his happy dance. "...cited!" he said! so sweet...
******* Praising God for our great report!!*******
When we got back to the room I asked Shane to show me his "excited" face again...........Friday, September 21, 2012
the Blessing of the House
 |
| The Yawkey |
 |
| Lovely Detailing! |
 |
| Loving on a memorial of Bert, a beloved therapy dog. |
 |
| What makes the house a home! |
But, overwhelming, it is obvious that LOVE built this house. LOVE maintains it! And the residents? Well, let's just say that we become family! A community. I believe community in the way God intended all of us to live. Living beyond ourselves and serving others. Living in reliance on others God has brought along side of us in our life journey. Beautiful! Not necessarily perfect, mind you. But, beautiful!
 |
| Home is here...for now! |
Thursday, September 20, 2012
Two Steps Forward...one step back
September 19th is a day to celebrate! Shane has been our son for 6 months!!! And come so far during that time. However, we spent much of it in the ER : /
The first night out of the hospital was a restless one. Shane just couldn't get comfortable. He seemed to breathing faster and harder. By 4 am, I decided to give him a nebulizer treatment and so Shane decided it was time to get up, too. Since we were going to have to move hotels, I thought it best to pack up everything...looked like we'd be going back over to the hospital for a check if the breathing didn't improve. By 6:15' things clearly had not gotten better...maybe worse so off to the ER we went : (. A not-so-fun way to spend 7 hours!
As I expected would happen, Shane is back on steroids to reduce swelling in his airways and regular breathing treatments. This would hopefully keep us out of being admitted. Apparently, Shane has a "friction" rub--- there is a fancy word for it---but is heart and lungs rub slightly(due to swelling from surgery plus Shane has a by small chest cavity. The friction produces fluid overtime as a reaction which Shane's new X-ray showed. The breathing problem ( not related to the fluid) is still likely a post-surgical issue that will resolve overtime. Separate issues but each causing rapid and labored respiration. However, we have a schedule now---- 8,12,4,8,12,4 . Neb treatments at all of them, Lasix, steroids and Motrin on the 8s, Baby Aspirin at night and another dose of Motrin somewhere in the middle. The nighttime treatments are a bit rough but otherwise all is doable!
Happily this morning Shane was more like himself....still some breathing issues but not distress! Trusting things improve even by the hour!
Praying that swelling goes down quickly, fluid goes away and the airways open and adjust! Our follow-up is Wednesday, September 26th. hoping we will get the "all clear" to go home. We sure are missing home!
The first night out of the hospital was a restless one. Shane just couldn't get comfortable. He seemed to breathing faster and harder. By 4 am, I decided to give him a nebulizer treatment and so Shane decided it was time to get up, too. Since we were going to have to move hotels, I thought it best to pack up everything...looked like we'd be going back over to the hospital for a check if the breathing didn't improve. By 6:15' things clearly had not gotten better...maybe worse so off to the ER we went : (. A not-so-fun way to spend 7 hours!
As I expected would happen, Shane is back on steroids to reduce swelling in his airways and regular breathing treatments. This would hopefully keep us out of being admitted. Apparently, Shane has a "friction" rub--- there is a fancy word for it---but is heart and lungs rub slightly(due to swelling from surgery plus Shane has a by small chest cavity. The friction produces fluid overtime as a reaction which Shane's new X-ray showed. The breathing problem ( not related to the fluid) is still likely a post-surgical issue that will resolve overtime. Separate issues but each causing rapid and labored respiration. However, we have a schedule now---- 8,12,4,8,12,4 . Neb treatments at all of them, Lasix, steroids and Motrin on the 8s, Baby Aspirin at night and another dose of Motrin somewhere in the middle. The nighttime treatments are a bit rough but otherwise all is doable!
Happily this morning Shane was more like himself....still some breathing issues but not distress! Trusting things improve even by the hour!
Praying that swelling goes down quickly, fluid goes away and the airways open and adjust! Our follow-up is Wednesday, September 26th. hoping we will get the "all clear" to go home. We sure are missing home!
Tuesday, September 18, 2012
DISCHARGED!!
Yesterday we had another echo done and a lung scan. The echo was to find out how the new heart anatomy was functioning and the lung scan was to see how well the blood was flowing to the lungs and it's distribution.
The echo showed the new conduit from the right ventricle to the pulmonary arteries was functioning well! Even after three years of misuse, the pulmonary arteries seem to be functioning well also under their new structure. The right ventricle(RV) doesn't appear to be over-pressurized based on the fact that none of the valves show leakage and the area is not enlarged. The best gauge of RV pressure is doing a heart cath...which at this point isn't necessary to do again. The re-routing of collaterals (some have narrower paths) at this point doesn't seem to be a hindrance either as the heart function was good. If these had been too narrow for good function then Shane would have had another cath to expand those narrow places. A re-evaluation between 3 and 6 months will determine how soon that might need to be done. The VSD was patched closed, too, and still the RV is maintaining reasonable pressure...a small incision was put in between the right and left atria as a "pop-off" should the pressure get too great...this will protect the heart from overworking. A collateral to the lower portion of the left lung was " ligated" or cut as this part of the left lung ( and vessels to it)had been hit for so long time with high pressure and a repair to this area would have extended surgery a good bit with not much, if any, gain as the docs explained to us. the echo also showed that there was no fluid around the heart...a good thing! Praise the Lord!
Next was the lung scan. radioactive isotopes are injected into the bloodstream and then a scan is done of the lungs---front and back. a very quick procedure. Unfortunately, all of Shane's IVs had been pulled a couple of days before so he had to have another IV inserted just for this test. : /. The doctor came back a short time later to let us know that Shane's scan showed flow to the right lung was 55% and to the left was 45%. I must have looked bewildered because she followed that with " your right lung has 3 lobes and the left has 2 lobes. his lung function is like that of any normal set of lungs.". Wait. Did I hear her correctly? Normal lungs! Only God!!!
So with that wonderful report, we were discharged this afternoon. We will remain in the area for another 7-10 days with appointments next week to follow-up and appointments for the me when we rerun home. Shane will receive another EKG and chest X-ray to make sure everything is still looking good before we have the doctor's blessing to return home. Shane still sometimes breathes a bit rapidly and coarsely so we have a nebulizer to treat him. This is why he was on the steroids before. We don't know yet if these asthma-like symptoms are residual from surgery or something new. Could be he has twitchy lungs like his oldest brother, Zachary.
Shane will remain on Lasix for any fluid retention and a daily baby aspirin. Tylenol and Motrin as needed for any pain. The nebulizer as needed to help with breathing by relaxing the airways.
Our prayer requests at this time should the Lord place Shane on your heart are:
1. The healing to continue on steadily
2. No fevers, etc. that could send us back to the hospital
3. Supernatural protection of the surgical site--- He is a an active 3 year-old boy!
4. For his lungs/breathing to settle down--- airways to stay open and NO wheezing
5. Now that we are not under the ever-watchful eye of nurses and docs, for me to be attentive but not overly concerned : ) !
Thank you once again, dear friends and family, for all of your prayers and words of encouragement!!! Please rejoice with us as we give thanks to the Father for his faithfulness and mighty work in Shane's life! We believe it is miraculous!
Celebrating!! This was the beginning of our discharge party.....Decaf Pumpkin Spice Latte...Oh yeah!...
...followed by pork dumplings, raspberries, strawberries, watermelon and a chocolate brownie! yum!
"All the nations you have made
will come and worship before you, Lord
they will bring glory to your name.
For you are great and do marvelous deeds;
you alone are God.
Teach me your way, Lord,
that I may rely on your faithfulness;
give me an undivided heart,
that I may fear your name."
Psalm 86:9-11
The echo showed the new conduit from the right ventricle to the pulmonary arteries was functioning well! Even after three years of misuse, the pulmonary arteries seem to be functioning well also under their new structure. The right ventricle(RV) doesn't appear to be over-pressurized based on the fact that none of the valves show leakage and the area is not enlarged. The best gauge of RV pressure is doing a heart cath...which at this point isn't necessary to do again. The re-routing of collaterals (some have narrower paths) at this point doesn't seem to be a hindrance either as the heart function was good. If these had been too narrow for good function then Shane would have had another cath to expand those narrow places. A re-evaluation between 3 and 6 months will determine how soon that might need to be done. The VSD was patched closed, too, and still the RV is maintaining reasonable pressure...a small incision was put in between the right and left atria as a "pop-off" should the pressure get too great...this will protect the heart from overworking. A collateral to the lower portion of the left lung was " ligated" or cut as this part of the left lung ( and vessels to it)had been hit for so long time with high pressure and a repair to this area would have extended surgery a good bit with not much, if any, gain as the docs explained to us. the echo also showed that there was no fluid around the heart...a good thing! Praise the Lord!
Next was the lung scan. radioactive isotopes are injected into the bloodstream and then a scan is done of the lungs---front and back. a very quick procedure. Unfortunately, all of Shane's IVs had been pulled a couple of days before so he had to have another IV inserted just for this test. : /. The doctor came back a short time later to let us know that Shane's scan showed flow to the right lung was 55% and to the left was 45%. I must have looked bewildered because she followed that with " your right lung has 3 lobes and the left has 2 lobes. his lung function is like that of any normal set of lungs.". Wait. Did I hear her correctly? Normal lungs! Only God!!!
So with that wonderful report, we were discharged this afternoon. We will remain in the area for another 7-10 days with appointments next week to follow-up and appointments for the me when we rerun home. Shane will receive another EKG and chest X-ray to make sure everything is still looking good before we have the doctor's blessing to return home. Shane still sometimes breathes a bit rapidly and coarsely so we have a nebulizer to treat him. This is why he was on the steroids before. We don't know yet if these asthma-like symptoms are residual from surgery or something new. Could be he has twitchy lungs like his oldest brother, Zachary.
Shane will remain on Lasix for any fluid retention and a daily baby aspirin. Tylenol and Motrin as needed for any pain. The nebulizer as needed to help with breathing by relaxing the airways.
Our prayer requests at this time should the Lord place Shane on your heart are:
1. The healing to continue on steadily
2. No fevers, etc. that could send us back to the hospital
3. Supernatural protection of the surgical site--- He is a an active 3 year-old boy!
4. For his lungs/breathing to settle down--- airways to stay open and NO wheezing
5. Now that we are not under the ever-watchful eye of nurses and docs, for me to be attentive but not overly concerned : ) !
Thank you once again, dear friends and family, for all of your prayers and words of encouragement!!! Please rejoice with us as we give thanks to the Father for his faithfulness and mighty work in Shane's life! We believe it is miraculous!
Celebrating!! This was the beginning of our discharge party.....Decaf Pumpkin Spice Latte...Oh yeah!...
...followed by pork dumplings, raspberries, strawberries, watermelon and a chocolate brownie! yum!
"All the nations you have made
will come and worship before you, Lord
they will bring glory to your name.
For you are great and do marvelous deeds;
you alone are God.
Teach me your way, Lord,
that I may rely on your faithfulness;
give me an undivided heart,
that I may fear your name."
Psalm 86:9-11
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