We're home!

With our pediatrician's permission, Joel and I came home. We're all happier being together again! Joel is much stronger than he was at release from the hospital three weeks ago. It's been seven weeks since his surgery. We can't keep him in a bubble forever and she said he will get sick, that's to be expected, but at least now he should be better equipped to fight things off. He's not ready to go back to school yet and will continue to have a tutor for short periods per school day and speech therapy once a week at home, until he's through recovery. Part of the reason he can't go back to school yet (besides having decreased stamina for a long day) is the continued quest for his blood thinner to be at the level where it needs to be.

The oxygen still runs through his bi-pap at night for now. His sleep study showed that he was having 20 episodes of sleep apnea per hour, which is severe! With the bi-Pap, that number has been reduced to about 2 1/2 episodes per hour, which they're pleased with at the sleep lab. He will have bi-annual visits there. It seems the prayers have helped him in several ways!

Oxygen

Joel is going for periods of time without oxygen, still requiring it when sitting quietly or sleeping.




I'm pleased that he's very talkative when sharing things of interest, like his "Family Book" that his sister Milly made and sent to him. He LOVES showing it off and naming each person! He can tell me whose house each picture was taken in, "MY house!" or when it was taken: "Joel's birfday!" And with some he'll give other captions, like "Milly Christmas hat, Christmas tree, Shrek Story PRESENTS!" and "Marshall chocolate face", and "Graf is like Prince Charming." Joel likes to place each person he knows as a character from his favorite movies.

We're homesick. I feel so terrible about missing ALL of these WEEKS with my other babies! Lora had barely been home and then she was thrown into life as a mother (sorry I'm missing this time with you too, Lora, and thank you!!!) plus she's in school full time...Gabe is helping when he can, (thank you Gabe!!) plus he works full time...and friends from church are doing the care taking when Lora and Gabe are both gone and Mike's at work (Thank you, friends!!!).

The little ones are getting sick; they have runny noses again (frequent sinus infections) and Mike said Ella was croupy last night. This is why Joel and I can't be home yet. I'd hoped for us to go home by this coming Monday, but maybe at least by the end of March?? I'm experiencing daily jaw pain and headaches...maybe from stress? We've decided to take some of the pressure off by waiting another year to sell our house/buy another. It makes me sad to miss more time with my dad, siblings and cousins. I always worry that it'll be too late! But we need more time to heal, regroup and be ready for more big changes.

We'll keep praying! I'm praying for many of you out there, that also have big trials in your lives right now. My heart goes out to you!

Helicopter vest

Joel's Vest treatment sounds just like a helicopter. Here's how he looks in the vest at Grammy's---doing a breathing treatment at the same time. The vest fills with air and then the tubes send fast bursts of air into it to shake his lungs free of mucous so he'll cough. The compressor unit itself looks like a large boom box. Joel's still needing oxygen in decreasing amounts but especially at night. His lungs sound great in the mornings and then his breathing gets rougher as the day wears on.

We've had a few visitors, including a wonderful woman who cut Joel's hair, his school tutor, home health care nurses and others whom he remembers and loves. Aside from grieving over the loss of home and family as he knew it, he's adjusting well to life as it is. I'm so pleased to see that he does remember people and things that he's learned at school. Our boy can read! And he can count to 50 out loud and identify many numbers!

Lora is giving her report on her mission to the high council tonight. I would've loved to have been there for that, but those who could go, are there.

Time for Joel to go to bed, goodnight everybody!

For Mike

Separated by necessity,
the breach against our will,
we work to reach a common goal,
the needs of all to fill.
The extremity of circumstance
wears upon my strength.
And even though it could be worse,
I hope for lesser length...
of time apart--I'm missing you!
I'm wishing to
be in your arms again,
and able to face every day
with you as it begins.
My darling one, my love, my friend,
when will we be together
when each day comes to an end?
May all go well and healing time
pass quickly until then!

by Dolores

"We ARE family. You tell us what to do and WE'LL get it done!"  Disney's Ratatouille.

A visit from a VIP and World Down Syndrome Day

Over President's day weekend while Joel was still in Children's, we had a special visitor from New York. Glaucio lives on Time Square where he is able to simply walk to his office at the Brazilian Embassy. He came to meet us and to visit Nauvoo as Lora's guest. Lora brought him to the hospital that Saturday morning, where we visited for a few moments as Joel slept. On Sunday, those of us at home had a very interesting conversation during and after dinner. I learned something of Brasil. Someday I would love to visit that country.





We decided that Ella most likely has some Brazilian ancestry, for several reasons... and because she looks somewhat like Glaucio and she loved him immediately.

Glaucio had an older brother with Down syndrome who died as an infant...most likely of cardiac problems... in his mother's arms. So sad! At that time they didn't have the marvelous heart surgeries that we have now. It was interesting for Glaucio to meet our children with Down syndrome and to have them come sit next to him. He said it was "eye opening" to be here and experience what they are really like in person.

He enjoyed his time in Nauvoo and Carthage, going to the temple and the other historical places.

Here is a letter Glaucio sent today, with a link to a Brazilian song and video montage in honor of World Down Syndrome Day which is on March 21st (3 of the 21st chromosome make Trisomy 21, or Down syndrome). It's so heartwarming to me that our new friend is still thinking of these kids. Hugs to you, Glaucio! And thank you to Patricia!

Be sure to go to the URL to hear the song and watch. The children in Brazil are beautiful. Enjoy!
~~~~~~~~~~~~~~~~~~~~~~

Dear Dolores,

A friend of mine, Patricia Almeida, is deeply involved on the Down Sindrome movement and activist. I told her several times about your wonderful family and the marvelous experience to be with you all, specially with the kids. A well known Brazilian musician, composed a song about the Down Sindrome, his name is Lenine and the song is available in the link below, sent it to me by Patricia. She remembered about you and asked me to share it with you. It's a pretty song.  The subtitles in English for the lyrics is available by clicking the English option on the CC bottom, on the down in the right hand side on your screen. Hope you enjoy the song, called World Down Sindrome Day..

http://www.youtube.com/user/CanalFBASD

Glaucio

Update on Joel

We took Joel to the hospitals for several appointments yesterday. He moved very slowly, with oxygen, sometimes in a wheelchair. Here are the results of those visits:

INR: 7.8. TOO HIGH! Blood is thin. Surgeon's office advised us to let him move slowly and cautiously. We continue to follow strictly the doctor's orders on blood thinner; it's still early on in finding accurate dosages of Coumadin after his latest valve replacement. The surgeon's office calls with orders from the surgeon each day, after they receive the results from that morning's blood draw done at the hospital lab.

Joel is becoming accustomed to the frequent lab draws again; always sitting up and holding Papa's hand for support. This morning he spelled his last name out loud for the technician, "W-Y-N-K-O-O-P"! He also answered how old he is, "Ten! Janary!" Afterwards, he always walks into the front office door and chooses stickers for his sticker book. They're all so good to him!

Joel's thyroid level was checked yesterday and was low; endocrinologist appointment resulted in a higher dose for his hypothyroidism.

His lungs look a lot better, continuing Pulmicort in nebulizer 2 X Day, Albuterol in neb 3 X Day. Continuing Vest treatments 2 X Day for 20 minutes each. Decreased Lasix to 2 X Day, Aldactone to once; not at night. Weaning off Steroids and tonight is last dose of Ativan. We can begin weaning him off the oxygen, according to the surgeon, making sure his sats stay 92 or above. Spot check his sats. I will still allow the monitor to run continuously on him during the night. He's continuing to sleep in the Bi-Pap mask at night.

The surgeon recommends that "Joel should stay at Grandma's house for two to three more weeks [because of the other little kids' frequent respiratory illnesses] as staying out of the hospital insurance." We will see the surgeon again in four weeks, so ultimately it will be Joel's regular pediatrician who makes the decision. He will be seen by her tomorrow, but not for that particular decision...yet.
Joel has been more talkative the last few days. This morning he's been moving about acting out a movie, more like the old Joel.

We're so grateful for his continued recovery! Words cannot express our gratitude to God --and to our friends and loved ones for their prayers to the Father on Joel's behalf. Help continues to be needed at home and those that are helping are true angels to our family!

Thursday

Joel slept only two hours during the day today and had a huge appetite. They say it's the steroids causing the increase in appetite.

Papa took us to the hospital lab this morning, for Joel's INR draw. Later, after he'd dropped us off at Grammy's, Joel asked, "Where my house? Where YOU house?" then answered himself, "Papa lost it. Papa lost Joel's house. Papa, you NAUGHTY!"

Joel and I enjoyed some hugs tonight and a story from the scriptures helped him fall asleep. So happy we have this little man. We miss being with all of the family.

Wednesday

There have been several times during the past month+ that I've awakened at night and wondered, "Where AM I ?!"  I'm sure it's been more confusing for Joel.
We're staying at Mike's mom's since his second release from Children's Hospital. He's on steroids, which lower immunities, so any visitors must be healthy.
Joel's been sleeping a lot. He stirred a little during a nap today and said aloud, "Alright Joel, let's go home!"
We're very close to home so that Papa can stop in and bring us needed items. That helps a lot.
Joel is wearing a Bi-Pap at night. He's getting a little better every day! This is a huge blessing!

Monday

This was a day full of arrangements for Joel's discharge. Things should go smoother this time as far as the equipment being provided for him. I'm especially grateful to our professional friends: our kids' physical therapist for support and advice and our good pediatrician for getting things moving!

Joel is having a sleep study tonight, Papa is still with him. The picture looks pretty scary but most of the wrapping is just so that he won't pull wires off.

When morning comes, Joel and I will move to Grammy's (Mike's mom's) house where I will room with him to make sure he always has his oxygen on his face. We will stay there until he is off of the oxygen and past danger of catching illnesses from the other little kids. Thank you, Mom!!

Timmy and Ella will start back to school in the morning. Ella is much better again, working through yet another round of antibiotics.

We'll continue to need help with the three youngest children Tues/Weds/Thurs during the times that Lora is in class and Gabe and Mike are at work.

More prayers were answered today! I'm feeling good about this.

Joel today and tonight

Joel looks better today! He took a couple of walks to the hospital playroom with Papa and Uncle Kevin and Grammy. Here is a picture of him wearing the bi-Pap, ready for sleep.
Goodnight, Little Mister!

A song about blessings

Here is a beautiful song that my friend shared with me; thank you Shelly! May it bless all my friends.



Blessings
Artist: Laura Story
Album: Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
As long as we have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

TULIPS!

Mike brought me tulips with the groceries early yesterday. This means that somewhere, outside (yes Dolores, there is an outside world), somewhere--- it's Spring!

Two days later...

Joel has been struggling, especially at night. Keeping the canula or the mask on his face during the night and having the proper home medical equipment to monitor him has also been a problem. On the doctor's advice, Gabe and I took Joel to the local ER this afternoon and were there more than five hours. It was decided that he needs to be on the Bi-Pap at Children's. Mike got off work in time to ride with Joel in the ambulance to Children's Hospital, where our boy is now in bed in Intermediate Care. I'm sure he just needs a few more days.

Feb 3 - March 3; Not your typical month

I'm going to share something very dear to my heart here.

In spite of our "best laid plans", we'd missed something important. I had even written out a list of important things that needed to be done before we could ask the Lord to light the way for our new journey....but we missed a big one that HE had for our list: Joel needed his heart fixed. We didn't know; now we do. It took a whole month in the hospital and will take at least another eight weeks recovery and follow up before we can check that one off of the list. But gratefully, we will check it off.

Each time Joel has been hospitalized for surgeries or other serious illnesses, there has been a time during his stay when I feared we would lose him. It's like a fear that comes into my throat and stops my speech, stops my heart. I've learned from these experiences that beyond all that I and the doctors and nurses can do at these times, I have to prayerfully, mentally and emotionally hand him over to God. He is the best parent of all, He knows the plan for Joel's life, He is ready and waiting to help; He is the Master Life Flight operator. (In spite of my limited vision, God and his angels write between the lines to fix things.)
This hospitalization, there were a couple of those really scary times; first, the day of surgery. My help came through faith in a blessing given to Joel that morning, assisted by the heart surgeon; we had the assurance that the doctors would be guided and Joel's heart would be healed.
Taking into consideration all that his surgery entailed (!!) and how his heart has recovered, this blessing was fulfilled.
The other time we had to completely hand him over to God was the night of February 23rd. Joel was so tired and seemed so depressed, struggling with his lungs. He looked at me differently, meaningfully, with such tired, sad eyes around his bi-pap mask that I immediately felt moved to say aloud, "I love you Joel! I love you! It's okay for you to sleep, it's okay for you to rest now."
Mike and I communicated earnestly that night, encouraging each other to be strong in faith and to trust him to the Lord. From the beginning, Joel's life has touched many hearts. I prayed as always, for God's will to be done...and I mentally placed Joel in the Lord's arms.

Now that we're home again, we give thanks for the unusual month that was just plucked out of our year...that our plans stopped so that Joel's heart wouldn't. I know that there is much ahead, Joel's lungs still have a long way to go to be well and all of the children have many needs. I pray for God and his angels to continue to minister to us and ours, to fill in what we don't know, to remind us what we've learned and to help us understand.

My love to all who followed, prayed, fasted and participated with us in this chapter of our lives!

As we pulled out of the hospital parking garage with Joel buckled into his car seat this evening, Joel told Papa, "RUN!"

Love,
Dolores

20 days post

Today was more of yesterday, except that now we know that Joel's release from the hospital is scheduled to happen tomorrow (Thursday, March 3rd) late afternoon. It was decided that his lungs aren't getting worse, but that he must feel worse at night because of the activity during the day. He'll have the swallow and sleep studies on an outpatient basis. We'll be back and forth to Peoria for a while for follow-up appointments.

Tonight while Joel was waiting for the breathing treatment he'd asked for, he put his hands over his eyes and asked his new nurse, "Where Joel?" and then said "Kittyboo!" so she'd pick up on the fact that he was playing peekaboo with her. She picked up and said, "Where's Joel?" back at him. He replied, "I don' know." So we acted like we couldn't find him either. Then, since we couldn't see HIM...he hid his mask. Lol, funny kid!

Papa will need to come get us tomorrow as Lora will be in school and Gabe will be at work when it's time to leave the hospital. We should be home by suppertime tomorrow.
Thank you and Praise the Lord!

19 Days

It's March now so Spring is coming!

Joel's X-rays were the same this morning but his INR was 3.9. He was given 5 mg Coumadin tonight. He had fun punching the balloon and playing bean bag toss with the physical therapist this morning. He ate more today and moved about easier. This evening he sounded worse again and I'm suspecting that he's either aspirating when he eats/drinks or it's asthma. I keep asking! He's so miserable trying to breathe at night. He was given an Albuterol breathing treatment tonight along with his Pulmicort. A new swallow study is supposed to happen tomorrow. They're having me prepare and give all of his oral meds in preparation for his discharge later this week; they expect to send him home on oxygen.

Tonight he asked to talk to Papa on the phone, and asked him to come over again. Now he's calling, "Dad!" and replying for him, "I comin', my boy!"

Prayers... and sleep, soon I hope. Goodnight!