Hi -
Jonathan's ear surgery and bronchoscopy is complete. The 1 mm tubes were placed and we have some lovely photos of his bronchial tubes and vocal cords. He is going to have one memorable baby book. His airway passages are narrower than usual, but now that we know this any problems he may have this winter should be easier to treat. I want to say he did well, but his recovery was a bit difficult - LOTS of wailing which is atypical of Jonathan's pleasant personality. He is fine today - he came home at 8am this morning and is receiving loads of lovin' from his siblings. I can't make a call on his hearing yet - there is probably still swelling in the ear canal and he is getting drops twice a day. Hopefully in the next few days we will see some dramatic improvement.
Only one more week of summer vacation remains - I am kind-of sad. I will miss Abigail, Luke and Marie - I'm soooo glad Jonathan is here - we should be able to keep pretty busy.
Love -
Jill
Friday, August 28, 2009
Wednesday, August 26, 2009
Jonathan's Ear Surgery
Hi -
Jonathan is having bilateral tubes put in his ears tomorrow at 7:45 am. It is our prayer that the insertion of the tubes will completely resolve the moderate hearing loss he has been suffering from since birth, or soon thereafter. You can experience his present level of hearing by placing your fingers snugly in your ears and then trying to hear what someone is saying across the room - not so good. He can hear at 65 decibels - a very loud conversational level. I am praying that he comes home and is shocked at the noise in this house - by that I mean I am actually hoping he shows me some level of acknowledgement, even irritation, of the everyday rancor of our busy home. He has never woke to his siblings shouting, a dog barking or the phone ringing. I never thought I would want my baby to be so noise-sensitive - heaven knows Luke woke to soft breathing outside his bedroom door - BUT I DO!
He will also have a laryngoscopy at the same time to evaluate the width of his throat near his vocal cords. This is a precaution being taken because he already has "noisy" breathing - presumably from the smaller opening - it will be helpful information as cold season begins because a smaller airway can lead to potential airway problems with the common cold and croup.
Please pray for our little fella and the doctors and staff at Children's Hospital in St. Paul. We report to the hospital at 6:15 am tomorrow, his surgery is at 7:45 am and he will have to stay at least one night for observation. (Please, please pray it is just one night - I am dreading another night in the hospital - I honestly cannot think of anything I would rather do less than spend another 24-plus hours in the hospital...actually, nope, I just thought of something(s)...but I still don't want to do it).
I will try and post tomorrow,
Love,
Jill
Jonathan is having bilateral tubes put in his ears tomorrow at 7:45 am. It is our prayer that the insertion of the tubes will completely resolve the moderate hearing loss he has been suffering from since birth, or soon thereafter. You can experience his present level of hearing by placing your fingers snugly in your ears and then trying to hear what someone is saying across the room - not so good. He can hear at 65 decibels - a very loud conversational level. I am praying that he comes home and is shocked at the noise in this house - by that I mean I am actually hoping he shows me some level of acknowledgement, even irritation, of the everyday rancor of our busy home. He has never woke to his siblings shouting, a dog barking or the phone ringing. I never thought I would want my baby to be so noise-sensitive - heaven knows Luke woke to soft breathing outside his bedroom door - BUT I DO!
He will also have a laryngoscopy at the same time to evaluate the width of his throat near his vocal cords. This is a precaution being taken because he already has "noisy" breathing - presumably from the smaller opening - it will be helpful information as cold season begins because a smaller airway can lead to potential airway problems with the common cold and croup.
Please pray for our little fella and the doctors and staff at Children's Hospital in St. Paul. We report to the hospital at 6:15 am tomorrow, his surgery is at 7:45 am and he will have to stay at least one night for observation. (Please, please pray it is just one night - I am dreading another night in the hospital - I honestly cannot think of anything I would rather do less than spend another 24-plus hours in the hospital...actually, nope, I just thought of something(s)...but I still don't want to do it).
I will try and post tomorrow,
Love,
Jill
Monday, August 17, 2009
Down Syndrome Research
Hi All -
We returned home from the Wisconsin Dells yesterday - Hallelujah!!! What were we thinking? I know there are people who enjoy the Dells - because there were about ten thousand of them there this past weekend - but, for our family, it was way too crazy. The Candyland hotel is okay - if you are a six year old boy - but there was no relaxation involved if you were a grown-up. Same goes for the rest of the Dells. The kids loved it - Craig and I were exhausted by the whole experience. Next year we are going North, to Mount Rushmore, camping...anywhere without giant upside down White House attractions costing ridiculous amounts of money to view. (Note: We did not pay to see the "Top Secret" upside down White House dropped into the Dells by aliens - seriously it is there - right on the main drag.)
On a more sane note, Jonathan had his first visit to the Down Syndrome Clinic at Children's Hospital today. In many ways, it was an appointment I have been kind-of dreading because I knew there would be information exchanged that might be hard to hear. Nonetheless, I met with his doctor and like everything else that has happened since Jonathan's birth the actual event was not nearly as traumatic as I feared. In fact, I dare say it was encouraging and hopeful in many different ways. Jonathan's medical care is progressing nicely and his motor development milestones (i.e. rolling, grabbing, eye tracking, etc.) were "very good." I wasn't too surprised about his physical capabilities - he is a strong and active little fella - he may be a Special Olympics champion someday. Of course, I wanted more information about what he saw in Jonathan's future - anything - will he be able to read, add, tell time, etc. His doctor patiently explained to me that it would be years before we would know the answers to those questions. I asked him again - probably five different times - in five different ways - my legal education paying off. But his answer was always the same. He is a good doctor and very experienced. I could tell he was unflapped by my impatience and need for certainty - it always gets back to needing a solid plan in my life. He eventually told me that 25% of kids with Down Syndrome never read, 50% read at an elementary school level and 25% at a high school level. I could tell that was the extent of information I was going to get on this subject and I moved on. To the existence of clinical trials and new scientific research in the area of Down Syndrome.
You know, there is a lot to be excited about...and a lot to pray about. He told me that there is hope for a cure for Down Syndrome - maybe in our lifetime. There is presently research that is exploring a treatment that would block the proteins created by the extra 21st chromosome in Down Syndrome babies. The neutralization of these proteins, it is believed, would stifle the damage the proteins inflict on the developing fetus' brain and other bodily organs. Wow. (I hope I explained this correctly.) Anyway, it is amazing.
I thought about this all afternoon and pondered the incredible abilities God has blessed His people with. Deep inside all of us He gives us the capacity to do things that are in many ways beyond our comprehension. From scientists who discover unimaginable medical treatments to everyday people who overcome unthinkable tragedy in their lives. He doesn't leave us when we face a tragedy or difficult circumstances. He is there when we seek Him and then He gives us a way through our trials. He hasn't always taken me on the path I believed would be best, but He has always rescued me and walked through on His sweeter, better path. Praise Him for that!
I am so thankful for all God has given us - for the things we know are there and the things that we have yet to realize. I am thankful for the potential He blessed us with. Now, I am going to pray that we, and I, realize it.
Love,
Jill
We returned home from the Wisconsin Dells yesterday - Hallelujah!!! What were we thinking? I know there are people who enjoy the Dells - because there were about ten thousand of them there this past weekend - but, for our family, it was way too crazy. The Candyland hotel is okay - if you are a six year old boy - but there was no relaxation involved if you were a grown-up. Same goes for the rest of the Dells. The kids loved it - Craig and I were exhausted by the whole experience. Next year we are going North, to Mount Rushmore, camping...anywhere without giant upside down White House attractions costing ridiculous amounts of money to view. (Note: We did not pay to see the "Top Secret" upside down White House dropped into the Dells by aliens - seriously it is there - right on the main drag.)
On a more sane note, Jonathan had his first visit to the Down Syndrome Clinic at Children's Hospital today. In many ways, it was an appointment I have been kind-of dreading because I knew there would be information exchanged that might be hard to hear. Nonetheless, I met with his doctor and like everything else that has happened since Jonathan's birth the actual event was not nearly as traumatic as I feared. In fact, I dare say it was encouraging and hopeful in many different ways. Jonathan's medical care is progressing nicely and his motor development milestones (i.e. rolling, grabbing, eye tracking, etc.) were "very good." I wasn't too surprised about his physical capabilities - he is a strong and active little fella - he may be a Special Olympics champion someday. Of course, I wanted more information about what he saw in Jonathan's future - anything - will he be able to read, add, tell time, etc. His doctor patiently explained to me that it would be years before we would know the answers to those questions. I asked him again - probably five different times - in five different ways - my legal education paying off. But his answer was always the same. He is a good doctor and very experienced. I could tell he was unflapped by my impatience and need for certainty - it always gets back to needing a solid plan in my life. He eventually told me that 25% of kids with Down Syndrome never read, 50% read at an elementary school level and 25% at a high school level. I could tell that was the extent of information I was going to get on this subject and I moved on. To the existence of clinical trials and new scientific research in the area of Down Syndrome.
You know, there is a lot to be excited about...and a lot to pray about. He told me that there is hope for a cure for Down Syndrome - maybe in our lifetime. There is presently research that is exploring a treatment that would block the proteins created by the extra 21st chromosome in Down Syndrome babies. The neutralization of these proteins, it is believed, would stifle the damage the proteins inflict on the developing fetus' brain and other bodily organs. Wow. (I hope I explained this correctly.) Anyway, it is amazing.
I thought about this all afternoon and pondered the incredible abilities God has blessed His people with. Deep inside all of us He gives us the capacity to do things that are in many ways beyond our comprehension. From scientists who discover unimaginable medical treatments to everyday people who overcome unthinkable tragedy in their lives. He doesn't leave us when we face a tragedy or difficult circumstances. He is there when we seek Him and then He gives us a way through our trials. He hasn't always taken me on the path I believed would be best, but He has always rescued me and walked through on His sweeter, better path. Praise Him for that!
I am so thankful for all God has given us - for the things we know are there and the things that we have yet to realize. I am thankful for the potential He blessed us with. Now, I am going to pray that we, and I, realize it.
Love,
Jill
Wednesday, August 12, 2009
First Trip
Hi All -
We have decided to take a small trip - to a BIG place - the Wisconsin Dells! We are leaving tomorrow and it will be Jonathan's first big trip away from home. He has been to Craig's parents' home in Iowa a few times, but nothing like this. We are staying at a "lovely" hotel that Luke and Marie affectionately refer to as "Candyland" because it is decorated with sweet treats and has lollypops to float on in the pool. What more could you ask for??
This is the first week since Jonathan has been home from the hospital that I have not taken him to a doctor appointment. Hallelujiah! It is a milestone of sorts and I am very thankful. He, and our family, have come a longgggg way. I wasn't sure how this summer was going to work out for us, but it has been wonderful. Jonathan is a pretty agreeable little guy - he goes with us to soccer and tball and a variety of camps and swimming when it is not too hot. He smiles all the time and is starting to make little "cooing" baby sounds.
So, we are off - I'll let you know how it goes.
Love, Jill
We have decided to take a small trip - to a BIG place - the Wisconsin Dells! We are leaving tomorrow and it will be Jonathan's first big trip away from home. He has been to Craig's parents' home in Iowa a few times, but nothing like this. We are staying at a "lovely" hotel that Luke and Marie affectionately refer to as "Candyland" because it is decorated with sweet treats and has lollypops to float on in the pool. What more could you ask for??
This is the first week since Jonathan has been home from the hospital that I have not taken him to a doctor appointment. Hallelujiah! It is a milestone of sorts and I am very thankful. He, and our family, have come a longgggg way. I wasn't sure how this summer was going to work out for us, but it has been wonderful. Jonathan is a pretty agreeable little guy - he goes with us to soccer and tball and a variety of camps and swimming when it is not too hot. He smiles all the time and is starting to make little "cooing" baby sounds.
So, we are off - I'll let you know how it goes.
Love, Jill
Friday, August 7, 2009
Jonathan's July -up
Hi All -
Jonathan had an appointment with his oncologist yesterday and had okay results. His leukemia has not returned, but his blood work is not normal. His white count has been falling for the last 3 months and is now at 4600. (A normal white count is between 5,000 and 15,000 - his white count was 160,000 on the day he was born). His doctor says she is not "panicking" yet and that we will just continue to monitor his blood counts. She doesn't have any good explanation for why this is happening - it could be residual chemotherapy effects, it could be that he will just have a low white count, or it could be an unknown. Anyway, please keep praying for our little fella - he is doing so good - he has been smiling all morning. He even smiled at the guy who drew his blood yesterday - until the poke came. He also had an appointment at the cranio-facial clinic to evaluate whether he needs a cranial cap - 8 1/2 weeks in the NICU left his head a little asymmetrical. They measured his head with a very fancy electrode stocking hat and a wand they waved around his head - then a perfect picture of every bump and fall on his head appeared on the computer screen. They can build a perfect helmet for him from the computer image. It took less than 2 minutes. Amazing. They will measure him again on 9/11 before they make him a cap, and if all goes well his head may grow in the right places and he may not even need a cap.
Today, it is raining and we are building blanket tents ALL over the house. It is peaceful though so I am not complaining. Oh - now we are going to bake. So much for the peace...
Love,
Jill
Jonathan had an appointment with his oncologist yesterday and had okay results. His leukemia has not returned, but his blood work is not normal. His white count has been falling for the last 3 months and is now at 4600. (A normal white count is between 5,000 and 15,000 - his white count was 160,000 on the day he was born). His doctor says she is not "panicking" yet and that we will just continue to monitor his blood counts. She doesn't have any good explanation for why this is happening - it could be residual chemotherapy effects, it could be that he will just have a low white count, or it could be an unknown. Anyway, please keep praying for our little fella - he is doing so good - he has been smiling all morning. He even smiled at the guy who drew his blood yesterday - until the poke came. He also had an appointment at the cranio-facial clinic to evaluate whether he needs a cranial cap - 8 1/2 weeks in the NICU left his head a little asymmetrical. They measured his head with a very fancy electrode stocking hat and a wand they waved around his head - then a perfect picture of every bump and fall on his head appeared on the computer screen. They can build a perfect helmet for him from the computer image. It took less than 2 minutes. Amazing. They will measure him again on 9/11 before they make him a cap, and if all goes well his head may grow in the right places and he may not even need a cap.
Today, it is raining and we are building blanket tents ALL over the house. It is peaceful though so I am not complaining. Oh - now we are going to bake. So much for the peace...
Love,
Jill
Monday, August 3, 2009
Happy Monday!
Everyone survived my trip to North Carolina - even Craig - although he did have a extra swing in his step as he RAN out the door this morning. Just kidding - I think.
I did have a really special time this weekend. I felt God lead me to this conference - but, you know, sometimes when you just really want to go somewhere His leading can be, well, "invented" or "imagined" or "concocted"...you get the idea. Well, during my time at the conference, I grew confident that God wanted me there. While I was there I visited the conference Prayer Room. In the Prayer Room the conference coordinators had tables set up with approximately 15-20 sheets of paper with different Hebrew names for the Lord. On each sheet of paper they placed tiny pieces of paper each one with the name of one of the 600+ attendees at the conference. A sign stated that the names had been "strategically" placed. Here is where my name was placed:
Everyone survived my trip to North Carolina - even Craig - although he did have a extra swing in his step as he RAN out the door this morning. Just kidding - I think.
I did have a really special time this weekend. I felt God lead me to this conference - but, you know, sometimes when you just really want to go somewhere His leading can be, well, "invented" or "imagined" or "concocted"...you get the idea. Well, during my time at the conference, I grew confident that God wanted me there. While I was there I visited the conference Prayer Room. In the Prayer Room the conference coordinators had tables set up with approximately 15-20 sheets of paper with different Hebrew names for the Lord. On each sheet of paper they placed tiny pieces of paper each one with the name of one of the 600+ attendees at the conference. A sign stated that the names had been "strategically" placed. Here is where my name was placed:
Jehovah Rapha
"The Lord Who Heals"
God has provided the final cure for spiritual, physical and emotional sickness in Jesus Christ. God can heal us. (Exodus 15:25-27, Psalm 103:3, 147:3, and 1 Peter 2:24).
My heart skipped a beat, or two, when I saw my name. It was in the right spot - a spot to remind me of something I should NEVER need reminding of.
Jill
Sunday, August 2, 2009
First post
Wow! Welcome to my new blog! I am sitting in the Charlotte, NC airport with my wonderful friend, Bethany. We attended a writer's conference this past weekend. God has planted a dream in my heart to write a book about the prayers and miracles that saved Jonathan's life after his premature birth five months ago. The conference was great because it offered practical insights into the process of publishing and many inspirational stories to fuel my dream.
I have been away from Craig and the kids for FOUR days and I miss them terribly right now. It wasn't easy to leave them - I don't recall ever leaving them for this long - except to give birth. I tried to make my departure as low-key as possible, so I didn't tell the kids until the night before. I told them I was going to "school" to learn how to write a book about how God healed Jonathan when he was sick. Phraseology is very important with my lovelies. For example, we never use the word "camp" to describe a summer activity - lest tears inevitably follow. All their summer activities are referred to as "classes." And so, my conference is called "school" and the kids laughed and smiled at my misfortune to be in "school" in the summer.
For friends and family joining me from the Caring Bridge site, I wanted to let you know that Jonathan is doing fabulous. He is smiling, rolls sideways, has a tiny giggle, bats at toys, sucks his thumb and puts everything he can into his mouth. He started "classes" with the St. Paul School District this summer and is learning all kinds of new things - such as the fine art of rattle holding. He had a hearing test in June which revealed moderate hearing loss in both ears. He is going to have tubes put in his ears in late August to improve his ear function. Please pray that the tubes would clear the fluid in his ears and COMPLETELY restore his hearing. And then pray that he doesn't develop a nervous condition from suddenly hearing all the noise in our house.
Well, our plane has just been delayed 10 minutes. We have 3 flights to return to Minnesota today - all on a very tight schedule - sooooo this could be interesting.
Jill
I have been away from Craig and the kids for FOUR days and I miss them terribly right now. It wasn't easy to leave them - I don't recall ever leaving them for this long - except to give birth. I tried to make my departure as low-key as possible, so I didn't tell the kids until the night before. I told them I was going to "school" to learn how to write a book about how God healed Jonathan when he was sick. Phraseology is very important with my lovelies. For example, we never use the word "camp" to describe a summer activity - lest tears inevitably follow. All their summer activities are referred to as "classes." And so, my conference is called "school" and the kids laughed and smiled at my misfortune to be in "school" in the summer.
For friends and family joining me from the Caring Bridge site, I wanted to let you know that Jonathan is doing fabulous. He is smiling, rolls sideways, has a tiny giggle, bats at toys, sucks his thumb and puts everything he can into his mouth. He started "classes" with the St. Paul School District this summer and is learning all kinds of new things - such as the fine art of rattle holding. He had a hearing test in June which revealed moderate hearing loss in both ears. He is going to have tubes put in his ears in late August to improve his ear function. Please pray that the tubes would clear the fluid in his ears and COMPLETELY restore his hearing. And then pray that he doesn't develop a nervous condition from suddenly hearing all the noise in our house.
Well, our plane has just been delayed 10 minutes. We have 3 flights to return to Minnesota today - all on a very tight schedule - sooooo this could be interesting.
Jill
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