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!
Wednesday, March 30, 2011
Wednesday, March 23, 2011
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!
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!
Thursday, March 17, 2011
Helicopter vest
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.
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.
Tuesday, March 15, 2011
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.
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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..
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!
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, March 10, 2011
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.
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.
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